I have friends and relatives alike who all of a sudden seemed to get on this “gluten-free diet” kick. over the past year or so  It seemed to have come out of nowhere, and I was pretty shocked and amazed when they would make such a big deal out of it.  If you don’t know, going “gluten-free” essentially means you stop eating anything with wheat, rye, barley or some other whole grains in it.  If you have never heard of it, you may now be thinking of all of the foods that instantly have to be removed from a person’s diet—bread, pasta, anything made with flour, etc.  It’s a pretty big list, and if those foods make up a good portion of your diet, it seems even harder.

When I read in Jenny McCarthy’s book, Louder Than Words, that this gluten-free diet in addition to a casein-free diet (GFCF) was helping her son, Evan,  physically, cognitively, and emotionally I was amazed.   Oh, and you think gluten free is hard?  Try adding the casein-free to it which now takes away all milk and dairy from your diet as well.  McCarthy mentions how when she started eliminating yeasts from Evan’s diet, he could think more clearly.  When she took him off glutens and caseins, his speech and vocabulary began to flourish and how even just one milkshake could cause him to regress.  She was having successes with changes his diet that no medication or therapy was affecting.

To understand that so many of these kids with autism have “gut issues,” as McCarthy describes, started to make sense to me.  The fact that what we eat really can make a difference in our overall health including our thinking skills started to register in a new way with me.  There’s more to that “you are what you eat” statement than meets the eye…

Let’s look at it like this. I don’t drink caffeine.  I decided in graduate school to wean myself off of it so that I could use it for what it really needed to be used for in my life—to stay awake.  So if I need to drive at night or be awake for any reason during my normal sleeping times, give me a can of Mountain Dew, and I’m up for hours!  Caffeine is a natural chemical stimulant found in beans and leaves of some plants that can affect your body and your mind.  I get it.  It makes sense to me, that’s why I chose to eliminate it from my daily life.  Other people have developed such a tolerance to it that caffeine has little to no effect on them daily.  So what about all of the glutens and caseins found in all sorts of other foods?  Maybe just maybe they affect people in negative ways–not all people, but some.  Just because I don’t have problems eating them doesn’t mean that other people don’t.  Who am I to judge?

Again it caused me to look at my own personal story for some personal history reflection.  My sister, too, has gut issues.  She has problems with her gastrointestinal system all the time.  Trust me when I say, glutens and caseins are essentially make up her  diet, so could eliminating those foods from her daily intake actually make a difference in her cognition?  It’s a totally foreign concept I had never considered before.  I think the answer is yes, though the jury is still out.  According to McCarthy, the GFCF diet is working for autistic children all across the country, so why wouldn’t it work for my sister, too?  I’ve simply asked people in my sister’s life to start watching her behavior after she eats certain foods.  Is she sleepier after she eats certain things, or does she seem to react violently when eating others? 

Over the years, she certainly had rougher bouts than others where she would react in varying ways at different times.  Sometimes you had no idea what “set her off” or what “pushed her buttons.”  Is it possible it was something she ate? Chances are when she got really upset it might have been some stomach bloating problems that she just couldn’t put into words—remember, she’s nonverbal.  Oh how I wish we would have only known to at least try it…All of these things that I’m learning and thinking about because of this Jenny McCarthy book…Amazing!  Truly amazing!  Apparently diets do matter…

I’ll be honest.  I don’t really like to read that much.  Maybe it’s because I got so burned out in graduate school having to read so many books cover to cover that weren’t that interesting to me?  Maybe it’s because I enjoyed watching Sesame Street and Electric Company better than reading Nancy Drew as a kid?  Maybe it’s because you can’t read about present day sporting events in a book?  Whatever the reason, it’s not in my nature to read.

However, a few years back, my husband and I started reading at night before bed, and I really enjoyed it.  It was sort of like a New Year’s resolution since we started in a January.  After a few months it faded, and I really haven’t read much since.  I did realize what sorts of books I like though—biographies.  There’s just something about the honesty and candidness in biographies that’s truly gripping to me.  I just adore them.  Maybe because they are usually people’s E! True Hollywood Stories in print, but regardless, I knew there were some books out there that actually interested me.

This past Christmas I got three books from my husband as gifts.  I suppose he thought we would get on that New Year’s Resolution kick again, but I didn’t really pick them up until my recent maternity leave.  When you’re a new mom, especially in my case, you often take the time to slow down for a few minutes.   You actually tend to have time on your hands every few hours where you’re just sitting for 20 or 30 minutes at a time feeding your child.  So I picked up a book.

I remember when I unwrapped the Jenny McCarthy book, Louder than Words, I was so excited.  It is subtitled “A Mother’s Journey in Healing Autism,” and while I wasn’t dealing with similar issues, I was fascinated to know what she had to say.   My husband had no idea I was interested in this book when he picked it up off of the clearance rack in a local bookstore.  Frankly, growing up with autism in your house makes you curious about others dealing with that condition, and in the work I do, there are bound to be others I interact with every day who deal with autistic tendencies in the developmentally disabled even if they haven’t specifically been diagnosed as such.

What a book!  Want to talk about inspiring me to advocate even more for people with special needs!  That’s just what McCarthy has become; an advocate and a woman who hasn’t let “no” stop her along the way.  From dealing with misdiagnosis after misdiagnosis and medication after medication she finally starts finding some answers to helping her son out of an autistic state.

I found it incredibly interesting that she was unaware of autistic characteristics that her son had from birth.  Symptoms that I think I would recognize right away like flapping his hands, being mesmerized by engineering things like escalators and door hinges, or his lack of affection toward her or anyone else.  I suppose even just a few short years ago people weren’t as aware of autism as they are today.  Then again, there is the denial factor that most people can go through, seeing the signs and not wanting to acknowledge them.  The way I see it, if you identify the signs, start with Early Intervention as quickly as possible.  See what you can do to make the person better or in the very least have a better quality of life for you and the individual you love.   Sometimes being an advocate just means opening your eyes and asking for help…. I’m learning a lot from Jenny McCarthy and her son, Evan… all because I read a book.

My sister is developmentally disabled.  She is diagnosed with cerebral palsy, mental retardation and autism, but the last of these diagnoses has not always been a part of her life—something I only came to remember in the past few weeks.  Here’s my autism story.

It was late in the 1980s when the movie, Rain Man, came out starring Dustin Hoffman and Tom Cruise.  I was a student in junior high school, and my sister was still living in my home with us.   I can distinctly remember thinking that some of the odd tendencies and characteristics about Raymond Babbitt (Hoffman’s character) reminded me of my sister.  No, she wasn’t a genius at counting or anything fascinating like that.  In fact, my sister is nonverbal, so even if she could count, we never knew it.  But there were things about his character that reminded me of her.  I stored those thoughts in my mind for a few years without ever actually telling anyone what I thought.

Fast forward a couple of years when my sister has moved into a residential group home program in my home state of Tennessee with an organization similar to ARC Marion.  I’ve talked before about how she and I were able to attend high school together, so I did get to see her pretty regularly even if just for a moment.  I was also in a speechwriting class my 10^th grade year when we had to do an educational speech.  I chose to give mine on autism spectrum.  I remember researching how the character Raymond “Rain Man” Babbitt was a savant which makes up a very small percentage of those diagnosed with autism, and I researched more and more.  Remember at the time, autism wasn’t very well known.  The numbers of those with the condition weren’t nearly as staggering as they are today. 

I told my mother at the time, that there were a lot of similarities between my sister and those associated and diagnosed with the disorder.  Here are a few examples: 

1) She loves routine and hates a break in that routine.  When we were in school, she would wait by the door of her classroom for the three bells to ring after lunch, because that would mean she could go for her daily walk through the halls.  The third bell was the tardy bell, so the halls were basically empty.  If her teacher or peer tutor wasn’t ready to go, she would be standing at the door, everyday, getting antsy to go on her walk.  Additionally, my mother picks my sister up every Saturday from her home and takes her out for the day to get her hair done and go to the mall, etc.  On days when my mother can’t pick her up, my sister tends to have behavior issues and just hasn’t been able to understand when that routine changes.

2) She loves music but is very specific in what she likes and doesn’t like.  She can’t talk, mind you, but she can certainly express her opinions of music through grunting, crying, acting out or laughing for joy.  I don’t know what it is with autism and music, but anyone who knows anything about autism can tell you there’s a strong connection.

3) In her frustrations she would often be abusive to herself and others.  She would bang her head, bite her arm or pull my hair when she was upset.  While some might associate negative behaviors with being bratty, the way she acted was more than that. I was sure of it.

4) She can spin ANYTHING!  As a child, she used to sit in the floor of my grandmother’s kitchen and spin a metal lid for what seemed like hours.  She could do it over and over always finding joy in it and never missing.  With just a fling of her wrist, she would have it going, and no one else in the family could ever do it like she could, every time.  I remember it as a child, but I never really associated it with autism until later in life.

Those are just a couple of my personal examples that spoke loudly to me, so as a high schooler I mentioned it to my mother.  I remember that at one point my mom actually told my sister’s doctors and caretakers what I thought and that she might be autistic.  And I remember them passing it off at the time.  I can remember when my Mom told me that they tested her or checked her or something to that effect, and no, she wasn’t autistic….

So, fast forward to present day.  I was able to look at some of my sister’s paperwork over the holidays last year and saw on her medical diagnosis that autism is now listed.  It didn’t occur to me until just last week that this is new news… when did they make this diagnosis?  What did they do to determine it?  Surely they aren’t just going off of what my mother said many years ago, since they dismissed it way back then.  

I don’t know the answers to those questions, but what I do know is that she now has the correct diagnosis.  And I’m glad I asked the questions!  If there’s one thing I want to do by telling my personal stories it is to encourage families of those with developmental disabilities to not give up advocating and asking questions for their loved ones.  Don’t get stuck in the box of a diagnosis if you think there could be something more. 

Another sibling of a DD individual mentioned to me that she used to tell her mother that her sister’s behaviors weren’t associated with her diagnosis at all.  In fact, in some instances the behaviors were just down right “bratty,” and any child would be having them regardless of mental retardation.  Sometimes those are just the things we need to see and realize.  Once we get to that point, we can start treating every individual with DD in the way that they need (and may not always want) to be treated.  Families, and especially siblings, I ask us to unite and advocate.  Ask questions.  Demand answers.  While there are times we may be incorrect in our judgment or observations, more times than not, I bet we’re right!

For those of you out there who might follow this blog on a regular basis, you have probably noticed that we took a one week hiatus without any new posts last week.  My sincerest apologies to anyone who enjoys seeing our bi-weekly updates.  In the past twelve months, it’s the first time we’ve “goofed” quite like this… it was totally my fault and my mistake to not schedule any blogs to post.  In actuality, I have been on maternity leave for the past seven weeks and wrote all of the blogs you’ve been following prior to my taking time away from the office.  And, I thought I had enough posts in the que to cover last week…apparently not.  So, my bad!

However, that doesn’t mean while I’ve been away that I haven’t been doing my own research for this blog to help us continue our journey in advocating for the special people in our lives with intellectual and developmental disabilities.  In fact, I’m coming back to the job with a new fervor and excitement that I haven’t experienced in some time.  I’ve been reading some books that have taken me back to some of my own personal experiences and given me insight into some new concepts that must be shared.  I hope you’ll see a new energy in the posts over the next few weeks and months.

So while I’m admitting I cheated in posting less than fresh thoughts, I hope you’ll take it as a pardonable sin and move ahead with us as we continue to be advocates for the ones we love.

Over the summer, we launched a new marketing endeavor called “The Point” to try to capture the attention of those in our community who may not know that much about who we are or what we do.  Now we’re taking it a step further in offering special one hour tours highlighting the ARC Marion campus and a few testimonials from the clients we serve.  The tours are held strictly to the one hour timeframe, and the tour attendees will see a group home, the Early Intervention Program and be introduced to some of the work the adult clients do in the Adult Day Training facility.  Additionally, participants will hear from a few ARC Marion and Hope Foundation folks who truly have a passion for this place.  We hope that within the hour you are here you, too, will understand why advocacy for these special people is so important.

So if you are in our area or traveling to our area in the near future we’d like to ask, can you give us an hour of your time?  If the answer is yes, email us at arc@mcarc.com or give us a call (352) 387-2210.  We’ll get you scheduled on an upcoming Point Tour and help you get the point…

For seven years, two local businessmen have teamed up to put on a golf event benefiting ARC Marion and the Heart of Florida Hope Foundation.  One, a mortgage broker, the other, a radio celebrity and radio station owner, but together they make up the (Matt Tabacchi) Allstate Mortgage/Brady Ackerman Golf Scramble.  It’s truly known as one of the most laid back, entertaining scrambles in town year in and year out, and this year should serve to be no different. 

It will be held this Friday, August 13, at the Ocala Golf Club in Ocala, and there are still a few spots left for sponsors and teams.  Over the years it has brought in between $5,000-$10,000 a year specifically for our scholarship program for ARC Marion clients, and with the need even greater this year we hope anyone and everyone will come out and participate.    We hope to see you on the links!

Yes, we mean it!  For the past 11 months we’ve brought you so many of our own stories and the stories we’ve  been seeing in the news.  Now it’s your turn… give us your stories.  Talk about issues that are pertinent to you.  Let us know your story, and we can make you a guest blogger for a day or a series depending on the topic you choose. 

Interested?  Simply contact us, and email your potential blog post.  All posts will be pre-screened for inclusion, but we want to give you a shot at advocating for the special people in your life by using our blog to share your story.  Hope to hear from you soon!

Now that we’ve been blogging for 11 months, it’s time to ask this question… how are we doing?  This was a new venture for ARC Marion back in September 2009, and we’ve been updating twice a week ever since…nearly 100 entries later, we want to know what you think.  What topics have been the most helpful?  What topics would you like to see us cover?  What else do you want to know?  We want to know your thoughts and opinions, so feel free to either contact us directly or place your comments here.  We want to hear from you!

In yet another great story about our local community embracing those with disabilities with fervor and enthusiasm, I am so happy pleased with another story I read recently in our local newspaper.  A dance troupe that assembled last fall includes five dancers with Down syndrome ranging in age from 11 to 27.  All of the ladies recently perfromed in a recital before friends and family members at the Family Wellness Center in Ocala.  In fact, one of ARC Marion’s own Adult Day Training clients, Lisa Shultz, is a dance participant.

Quotes in the paper from parents applauded the instructor’s patience and perseverance.  They noted how their children’s socialization and balance had improved due to the dance classes and praised the fact that they had found peer appropriate activities for their daughters.  The exercise is great for the girls, and it’s helped many of them “come out of their shells.”  The Time to Dance ensemble has become a passion for the instructor, Michelle Lemieux-Smith of Ocala, and it seems that all involved are more than pleased with the results they’ve seen both on and off the dance floor.

I first want to praise our local newspaper, the Ocala Star Banner, for continually printing such great stories about the exceptional people in our town.  There are so many things we would never know about if it wasn’t for their coverage.  But more importantly I say way to go Michelle and the Time to Dance troupe for a job well done!  Continue to keep those toes a tapping and hands a clapping, because you’re inspirations to us all.  Keep dancing for joy!

The University of Florida in Gainesville is receiving a federal grant to improve the special education training for doctoral students seeking to become professors and researchers for students with severe disaiblities.  I’ve stressed before how impressed I am with my undergraduate institution for their research and training in the area of special education, and I’ve known for some time that the state of Tennessee has been more progressive over the years in educating those with disabilities.  Now it’s time for Florida to step up and stop lagging behind. 

In this article highlighting the grant, Diane Ryndak, associate professor of special education at UF noted, “In Florida, there hasn’t been an emphasis on developing teachers with that  expertise.”  The expertise she’s referencing is for teachers trained in educating children with varying disabilities “from autism to multiple physical disabilities.”   While I am pleased with the interest and efforts the school, located 45 miles away, is making in this field, I’m pretty shocked and surprised it has taken this long.  Shouldn’t the training of special education teachers be pretty high on the list of priorities, especially when those very teachers can and have helped students actually become mainstreamed into “normal” classrooms and have given greater quality of life to so many students around the country?  It also makes me wonder if Florida is this far behind, how far behind are other states in this kind of specialized training for teachers?

With one in 110 children born in the U.S. being diagnosed with autism I truly hope it isn’t too little too late.  What are all of these parents of these children going to do when they receive this diagnosis and can’t find good quality teachers to help their children in a safe learning environment?  Nevertheless, I must applaud UF for getting on board and helping to prepare special education teachers to meet these special children’s needs head on.  It’s about time.

For news you can use, you might want to have a little more information about ARC Marion, and what’s been going on in our neck of the woods.  Sure we post blogs on here all the time about various pertinent and not so important things, but if you want to take the time to see a little bit more of what we are and what we do, here’s the latest newsletter out this month—spring/summer 2010 issue of The Point!  Enjoy!

In April and May ARC Marion launched a new type of campaign than had ever been done before in the non-profit sector of our local area.  Around town, red exclamation points began popping up.  In our local Ocala Magazine, in the Family Times Magazine, on billboards both digital and permanent, on Ocala4sale.com and on business cards that were placed in various locations all around our community.  They were plain, simple and didn’t explain at all what they were.  Just a tease of sorts to try to get the community guessing.

On June 4, at the annual Hog for HopeTM Blues & BBQ event, in front of 400 or so guests, the boards of both ARC Marion and the Heart of Florida Hope Foundation revealed the mystery, that we were the ones trying to get the point across.  The new billboards state “the new look of action makes the point.”  We want to stress that first and foremost, we are the Advocacy Resource Center advocating for those with disabilities.  And secondly that we put our Clients First!  Hopefully over the coming weeks and months it will become even clearer what our objectives were by this new type of marketing campaign as we hope people all over town will start to get the point. 

We are advocates… do you get our point?

In what I promise to be my last blog about TV for a while, I thought it was appropriate to discuss the wildly popular show that’s taken audiences by storm over the past two seasons, Glee.  (I feel like a chorus of La, la, la in harmony should follow me every time I even mention the name…Glee).  Nevertheless, if you haven’t ever seen it or in the very least even heard of it, allow me to give the briefest of synopses. 

It takes place in a modern day high school where the once ridiculously unpopular Glee Club suddenly has a change of face when football players and cheerleaders join their ranks throughout season one.  Though there are still plenty of “nerd” types filling the group, they do turn out realtively popular in the end, because their talents are pretty amazing.

So why would I mention this TV show here in a blog devoted to those with disabilities?  Simple.  There are two such examples of how Glee is showing people with disabilities in a little different light.  Case number one: Artie.  Artie is a key character in the original Glee Club, before they were popular, and he’s in a wheelchair due to an auto accident he was in as a child.  Though he wasn’t born with the disability, he lives with it day in and day out and shows he’s still madly talented vocally and deserves to be in Glee.  Routines are choreographed around him so that he’s included all the time, and there’s never really much thought given to his disabilities, just his abilities glow all the time.

Example number two: Jean.  Even the most crazed Glee fan may have to dig a little deeper for that name in their Glee vault to realize who she is, but she is Sue Sylvester’s sister who has Down syndrome.  Allow me to explain who the over-the-top, always politically incorrect Sue Sylvester is.  The coach of the nationally recognized cheerleading squad, the Cheerios, her one mission throughout the show is to take down the Glee Club from the inside out and their director in the process.  Her vision for their dismantling is what gets cheerleaders involved in the first place, but they just seemed to stick around even after they’ve done dirty work for her.  Sue is always portrayed as the meanest, most ruthless of individuals who only cares about herself and being number one, except when you meet her sister.

Sue visits Jean, who lives in a group home, a few times throughout the series, and I must admit, each time seems more touching than the last.  It’s a fascinating twist to an already twisted character that the first time really left me saying “wow.” 

The only controversy comes in that Artie isn’t played by a person with disabilities at all.  As I stressed before, the verdict is still out on how I really feel about that as being a problem, but the show is called Glee and revolves around music.  If there wasn’t a person in a wheelchair who auditioned that could do vocally what he can do, then I suppose Kevin McHale is the best man for the job, disabled or not.

Clearly the writers of Glee have those with disabilities in mind when they include characters like Artie and Jean into the regular scope of the show.  And to me, that’s a whole new way of advocacy!

I’m always pleased when I see people with disabilities portrayed in entertainment in a positive light.  Do I always cry profusely at movies or scenes in TV shows that show especially touching moments with people who are physically or intellectually disabled?  Of course.  There’s just a soft spot in me for things like that.  I can think of a few such examples… When Jodie Foster played “Nell,” Sean Penn’s portrayal in “I am Sam,” Dustin Hoffman in “Rain Man,” Cuba Gooding Jr. in “Radio,” Daniel Day Lewis in “My Left Foot,” even Billy Bob Thornton in “Slingblade” as good or bad as that might be… I could go on.  But it wasn’t until recently that I realized each one of these movies depicting a disabled person is rarely ever played by a disabled person.  Sure actors receive great accolades and even Academy Awards for their portrayal of characters like those mentioned above, but are there those individuals with disabilities who could have played some of those key roles?  And furthermore, would they have wanted to do so or been capable of it? 

A recent article I read indicated that people with disabilities are being seen more in entertainment.  Their characters are being written into scripts not just in happenstance fashion but actually with a purpose and meaning.  Certainly in all of my examples above, the focal point of each script evolved around that specific character, but now there are storylines being written with a neighbor who’s disabled or scientist with artificial legs.  It isn’t by chance that the Screen Actor’s Guild has a Performer’s With Disabilities Committee specifically for those actors who are disabled and can really perform as well.

To be honest, I’m pretty torn about the whole thing.  While on the one hand I can see why everyone should receive equal opportunity to at least have a shot at something, at their dreams, I can also see how a producer or director would want to hire the best person for the job, for their abilities, regardless of their disabilities.  And as long as the character isn’t being portrayed in a derogatory or negative way, then having the best person play the role, disabled or not, is probably better for the developmentally disabled population as a whole.  So I say, keep including them, and even build storylines around them, and the entertainment world, too, can advocate for the special people.

I’m on a little bit of a TV kick.  Maybe it’s because it’s summer.  Maybe I am just enjoying the relaxation and enjoyment of just sitting back and watching mindless TV and movies.  Or maybe it’s because when we see things that touch our hearts, they stick with us.  So was the TV show “Life Goes On.”

Though it only aired for four years, it was the first TV show ever to depict the life of a person with Down syndrome as a major character.  Chris Burke played “Corky,” a student with Down syndrome who was mainstreamed into public school despite the school’s protest.  The first two seasons showed the day to day struggles of a family living with a child with Down syndrome.  It was fascinating, touching, and real. 

As the show progressed, it took a different turn and didn’t focus on Corky as much.  In my opinion, that’s probably what led to its demise, because it lost its focus and what made it popular in the first place.  After doing a little wiki research about Chris Burke, I learned that he has pretty progressive parents who always taught him to follow his dreams.  They wanted him to be mainstreamed as a child into “regular” classrooms, but that just wasn’t occurring in New York in the 1980s.  He attended school in Pennsylvania instead and started pursuing and learning more about acting while there.

It appears Chris Burke will actually be in Orlando July 16-18 performing at the National Down Syndrome Congress Convention with a folk band with whom he now travels.  He’s come a long way from that ABC series in the early 90s, but he certainly never stopped entertaining crowds, despite his disability.  My hat’s off to you, Chris Burke, and the ABC group who put Life Goes On on TV years ago.  It was good quality family programming, and I would love to see more of it, two decades later.

The following piece is adapted from the Florida Association for Rehabilitative Facilities (ARF) Medicaid Waiver cuts white paper for the developmentally disabled.  It gives a bleak but accurate picture of the cuts seen within the system over the past seven years.

• In July 2003, the State of Florida Agency for Person’s with Disabilities (APD) adopted a system that contained up to 720 billing options for residential habilitation (group home) rates and new rates for most of the 30+ services funded by the Home and Community Based Services Waiver (HCBS).  The legislature started using a reimbursement system that was based on direct care wages funded at the 25^th percentile compared to national averages for wages.
• In November 2003, APD reduced group home rates by 14.3% and Live In Residential Habilitation by 7%.  Also, billable days were limited to 350 per year for homes having more than 3 individuals.  Adult Day Training (ADT) rates were reduced by about 9.5%. 
• In 2004, APD implemented a group home matrix approach which looked at staffing.  In many cases the last two admissions to a six-bed group home received reduced billable hours.   
• In 2006, agencies received a 2.81% Cost of Living Adjustment that applied to all waiver services. 
• During the 2007 Legislative Session, the Florida Legislature mandated changes in Senate Bill 1124 that resulted in limitations and eliminations of Developmental Services Home and Community Based Services (HCBS) Waiver services funded through the Medicaid program.   1) IQ Testing (Psychological Assessments) services were eliminated. 2) APD will be implementing a uniform rate for individuals with intense needs, but a date for implementation has yet to be set. 3) Supported Living Coaching has been limited to no more than 20 hours a month for persons who also receive in-home support services.
• In December 2007, group home rates were collapsed and reduced overall by 7%; however, a settlement agreement reduced the reductions to 4.25%. 
• As a result of the 2007 legislation, Agency for Health Care Administration (AHCA) in consultation with APD sought and obtained federal approval for two additional waivers to implement a four-tiered waiver system. (See blog on tiers)
• In May 2008, proviso language passed that implemented a $43 million across the board rate cut for waiver services that was implemented in July 1, 2008.  Group homes and Support Coordination received a 3% cut effective July 1, 2008, (in addition to the 4% reduction taken in December 2007 for group homes) and other waiver services received a 7.21% reduction in rates. 
• In October 2008, the APD began a rebasing exercise which was intended to freeze individual service expenditures as of January 2009 at the FY 07-08 level plus no more than a 5% increase until June 30, 2009. 
• In January 2009, during a Special Session the Florida Legislature approved a 3% rate reduction ($21 million) for DD waiver services.  However, the rate reduction was vetoed by the Governor and was not implemented.
• The 2010 Legislature decreased the overall funding level for the waiver by $43.8 million, and did not continue anticipated federal stimulus (FMAP) dollars that would continue Florida’s current enhanced FMAP ratio from January 2011 through June 30, 2011. The proviso language approved by the 2010 legislature included a 2.5% provider rate reduction for most waiver services However, the Governor vetoed the rate cut language. 

 The funding level for next fiscal year (FY 10-11) is only about $7 million more than the FY 05-06 amount.  There was a time, when we were actually getting better with funding for those with disabilities in the state of Florida.  However, the current trends show that individuals on the waiver are receiving fewer services while only limited new enrollment is occurring.  There are over 20,000 people on a “waiting list” to receive services in the state of Florida… though I am not a fan of big government or government-run healthcare, who else is going to help those who truly cannot help themselves?  The state of Florida is going to have to respond on behalf of those who can’t speak for themselves…The picture is pretty bleak, but we must continue to advocate for these special people.  After all, if we don’t, who will?

In May, the state of Florida legislature sent a budget to the Governor’s office in Tallahassee that included 2.5% cuts across the board for Medicaid waiver services, specifically hurting providers that assist individuals with disabilities.  A grassroots effort was launched throughout the state on behalf of the agencies requesting that parents, board members and advocates get specifically target Gov. Crist’s office by sending mass emails making one specific request—veto line item 242.   I am pleased to say that it worked!  In fact, when the Gov. specifically referenced this line item, he used many of the same talking points that were included in the emails sent by parents and board members throughout the sunshine state.

Here is an excerpt from my own email to the Governor:

“ARC Marion continues to be responsible for the care and safety of the individuals they serve daily.  With cut after cut after cut, they cannot adequately provide for the most vulnerable of citizens—who are still voting constituents, whether you want to acknowledge them as such or not.   Originally, our Foundation established a scholarship program to try to assist new individuals to receive services at ARC Marion, those who are on the massive waiting list to receive Medicaid waiver funding.  However, we have had to step up and only assist those who have no family support and live with ARC Marion full-time due to their continued individual cuts.  With rising fuel costs, unemployment rates and the like eating away at any financial support these disadvantaged people have, it is astonishing that their rates continue to go down with more and more cuts being discussed daily like this language I’m asking you to veto.  I am glad that we at least had the foresight to establish scholarships at all.  If it weren’t for our great community, there would be potentially hundreds of homeless developmentally disabled individuals in our county…who would care for them then?

I would hate to think that you, as Governor, choose to only veto those bills for people groups with loud voices, i.e. teachers!  Just because those with disabilities may not be able to speak for themselves certainly doesn’t mean they are any less important!”

While we were able to avoid this most recent cut, the fight can’t stop now.  A new governor will be in office soon as Gov. Crist vacates his seat in November, and a whole new group of legislators will be voted into office in the fall as well.  We mustn’t forget those incumbents as well as any candidate for office who can help us with this voice!  It’s time for us as advocates to stand firm on speaking for those who can’t speak for themselves…. In hopes that they will sometimes, more often than not, get it right!

It’s June. It’s the month for brides. Though my own wedding occurred in August nearly six years ago, I always think of weddings when this time of year rolls around. When you’re planning a special occasion like a wedding and need to consider family, friends, other guests, there’s always a little extra thought needed when you have loved ones with developmental disabilities to include as well.

For my special day, my family and I knew that my sister simply could not attend the event. She is nonverbal, enjoys her regular routine and locations she goes with my family and would prefer not to deviate from that scenario. But being my only sibling, I certainly wanted her to be a part of the day in some way.

We chose to have a bridesmaid dress made for her to match my other attendants, and she was present during my bridal portraits taken a few months before the wedding. My mother had her dress hanging in her room for several weeks prior to the picture day so that when she was home on Saturdays, Mom would call it her “princess dress” and tell her what was going to happen in a few weeks.

The photographer was a longtime family friend and remembered my sister from her younger years at our local church. He was pretty comfortable with the whole thing, but we made sure to have nearly all of my individual pictures taken before she arrived. We chose to have them made at my aunt’s house, a relatively familiar place to my sister, and just had the photographer ready to shoot at a moment’s notice. You never really know what to expect when she’s introduced to a new situation, and we certainly didn’t that day either.

Basically, I just followed her around the house, carrying my bouquet and hoping she wouldn’t step on my dress. We eventually got two pretty good shots, one of me kneeling looking at her by the grand piano, and one of us standing side by side in the hallway of the home—remember, I said I was following her around.

At the wedding reception, we had two different portraits on display, one of me and one of me and my sister.  It was a great way for the hundreds of guests to see her pretty face even if she wasn’t there.  The portrait now hangs in my mother’s hallway at the bottom of her staircase where my sister can see it every time  she’s going up and down to her room.

I’m so glad we did it!  Though there were plenty of challenges along the way, it was our way of making her a part of my special day, my wedding day!

This week, my sister turned 32-years-old.  It’s quite difficult to believe that the little girl I once took care of on a regular basis is all grown up now.  However, since I, too, am getting older, it only seems appropriate.  At times it’s just hard to imagine those with developmental disabilities getting older.  You see, many of them have been child-like their whole lives, so the fact that they age is sort of baffling.  Nevertheless, as we get older, so do they, and their needs become different, too.

A friend of mine who is also the sibling of a developmentally disabled sister noted just the other day when we were speaking about this very subject that those with disabilities growing up in this day and age are going to be quite different than any others we’ve seen in past generations.  They have had the privileges of modern medicine and very rarely have they grown up in institution-like settings like those half a century ago.  Then you add to that the ailments that come on more quickly for them, like the Alzheimer’s and Down syndrome link, and you could potentially see individuals with DD living with Alzheimer’s for 30 or 40 years.  That’s pretty hard to comprehend, but it’s certainly a fact we’re going to have to start addressing… not just as an organization like ARC Marion, but also as a community, state and nation. 

Where will all of these people go?  Who will care for them when they need it most, even more so than they need it now?  With reductions in funding to the provider-based group homes and agenices, who is going to step up and care for those who may need more care and attention than we’ve ever seen?  It’s sort of a scary concept when you really look at the possiblities over the next couple of decades.

One of the clients at ARC Marion is in his 70s.  Fortunately, he doesn’t have early onset Alzheimer’s, but several of his “classmates” in our seniors program in Adult Day Training have been diagnosed with the  condition.  I’m sure it’s hard for some people to believe that those with disabilities are living into the Medicare years and beyond.  As we all get older, we should also take into consideration the others around us who are getting older, too… and then try to come up with a solution to help them age gracefully as well.

In recent weeks I’ve seen national and state stories in the news referencing some of the most horrific crimes against those with disabilities.  Whether young or old, given a chance at life or living life only to have it cut short, it’s amazing to me that people who have never had the chance to know or love someone with a developmental or intellectual disability would  think of them as horrible people. 

Then there are amazingly horrible cases such as an example that occurred in June in Boulder, CO where a woman killed her infant son, because she thought he was autistic and would “ruin” her life.  She originally said she wanted to commit suicide but didn’t want to burden her husband with possibly raising an autistic son.  What’s ironic about i is that she actually had worked as a hospital counselor treating autistic children and deduced that her son had the disorder though Pediactricians disagreed with her assessment.  Here’s a woman who knows and treats autism head on and yet couldn’t find herself taking care of a child with the condition.  Better to kill the kid, I suppose.  Amazing!

In a similarly related story I read that national studies show about 90 percent of pregnancies with prenatal diagnoses of Down syndrome are terminated or aborted.  Again, an incredible decision I can’t imagine someone making.  No, I’m not trying to pass judgment on anyone, well except the Colorado Mom who’s a murderer, but wow can it really be true?  Are we living in such a fast paced society that we are so selfish to take on anything that could appear on the outside to be a burden? 

Let’s put it in a little different context.  Say your spouse suddenly has a car accident or terminal illness that causes you to have to become a primary caregiver for years on end.  Would you just give up or try to kill him or her out of convenience for yourself?  Would you try to end the relationship in hopes that the burden would become someone else’s problem?  What if the person with the terminal illness or in a car accident was a child?  Would you just leave him or her without any regard for the future?  I hope the answer is no… so what makes the two scenarios much different?  Sure you know the person to whom you are married or the child you’ve reared and have gotten to know them, their personality traits and characteristics over the years, but what makes those relationships any greater than that of an infant child with budding potential and limitless possibilties… with abundant growth in his/her future and the ability to nurture, train and love that child unconditionally throughout his/her lifetime?

I can only hope that as society progresses that we truly do that, have progressive thinking toward those with disabilities.  Don’t put them in a box, literally and figuratively, thinking that raising, nurturing and loving  that little person will ruin your life.  I really just can’t imagine… and hope I don’t hear too many more instances of this kind of horrible news.

When the Heart of Florida Hope Foundation began the Scholarships for Hope fund, there was a plan in place.  In the state of Florida there are 20,000 individuals who qualify for Medicaid waiver funding that are put on a waiting list.  You might imagine it takes several years for those people to come off of that list so that they can have the money from the state to pay for services they greatly need.  Then there is another group of people with an IQ above 70 who will never qualify for funding from the state that may still need services from organizations like ARC Marion.

Nearly three years ago, the Hope Foundation started the process of raising money specifically for scholarships, for those individuals on the waiting list as well as for those who don’t qualify for funding.  We started raising money, and donations came in quickly.  Then the tier system happened and so did rebasing.  With 51 people living in ARC Marion’s care full-time, 24/7 receiving drastic funding cuts to their individual service plans, the Hope Foundation had to step up and fill in the gap.  We are pleased to say, that the donations have continued, and ARC Marion clients are receiving uninterrupted care regardless of their state funding cuts.

However, there are still those on the waiting list in our own community that we would love to serve at ARC Marion.  If you’d like more information on how you can get involved in helping developmentally disabled people receive job support and living support services, we’d be happy to share that with you.  Help us continue our vision of offering hope through scholarships!

What would losing $15,000 a year do to you?  Knowing present economic situations across the country, it’s easy for someone to understand what it’s like to lose a job or have hours cut back, lose your benefits, live month to month and have all of your finances in turmoil.  Picture a similar scenario for someone who is developmentally disabled, except in most cases, those with disabilities may not even know how the services they receive and their living conditions are paid for in the first place.

ARC Marion has 51 individuals living in our care 24/7 with very few of them having any family support at all.  All of those people have Florida Medicaid waiver funding to support them for everything in their lives from housing to transportation to dental care.  Now picture the phenomenon that is the Florida legislature’s attempt to balance the budget– the tier system.  Through an odd and somewhat antiquated formula-driven assessment tool, developmentally disabled individuals are asked questions about their lives and current situation that in turn drives the amount of funding he or she receives from the state.  Many questions aren’t asked that could be, and of those that are considered, many of them don’t show the full picture.

Here’s a real life scenario of just one of those 51 clients.  Client A has lived in ARC Marion care for decades.  Until last year, Client A was receiving $50,000 a year (Tier 2) in Medicaid waiver funding for residential housing, attendance in the Adult Day Training program, companion services, use of a support coordinator, dental care, and transportation five days a week.  Suddenly, just a few short months ago, Client A was placed into Tier 3 and now only receives $35,000 a year to pay for the same service that is still needed day in and day out.  The real irony is that there are plenty of other individuals in the same tier who live with their families and don’t need group home residential support which can cost upwards of $30,000 a year in and of itself.

So what happens to Client A?  The $6,500 annual shortfall has to come from somewhere to pay for what Client A needs every day.  Does Client A have any idea this is happening?  Of course not, because Client A is one of those people who doesn’t really understand money or how things are paid for anyway.  Does Client A’s family step up to support the need?  No, because even though they are local, they don’t visit or call or have any contact with Client A throughout the year.

That’s where the Heart of Florida Hope Foundation comes in for Client A.  Monthly checks are written out of the Foundation’s scholarship fund to support this client and dozens of others at ARC Marion who have had their Tiers change within the past year for no apparent reason.  Another irony to the story is that Client A has yet to be diagnosed with early onset Alzheimer’s, but ARC Marion staff tends to believe it’s just a matter of time before that happens.  If/when it does, will Client A be re-assessed to receive more funding?  The answer is no.   To our knowledge, no one in ARC Marion’s care or any other provider’s care across the state has ever been moved to a higher tier level in order to receive more funding, though as they age (remember, Client A has lived with us for decades) they all tend to require more services.

If this scenario doesn’t make you want to shed real tears over the Florida tier system, it should!

Once again, those who support ARC Marion and the Heart of Florida Hope Foundation’s annual Hog for Hope events have come through in a big way, and we simply want to say thanks! 

Maureen Hamilton on her new Harley

Whether you own a business that sponsored us, or you live in the Marion County area and were able to attend our events, or you live out-of-town or out-of-state and simply purchased a Hog for Hope chance drawing ticket to win a custom Harley-Davidson Street Glide… we THANK YOU!  This year’s events made over $65,000 for the Foundation in support of the Scholarships for Hope fund for ARC Marion clients.

Be on the lookout for the 10^th annual Hog for Hope in 2011 as well as other events of the Foundation throughout the coming years.  They truly are events you won’t want to miss! Thank you!

As a child growing up with a special needs sister it wasn’t always easy to travel.  My parents tried, mind you, to take us to Disney or to the beach or even to family reunions just a few hours away, but as my sister got older and more set in her ways, traveling became more and more difficult on us all.  You see, for those with autistic tendencies like my sister, a break in her routine can really cause some upheaval.  Something as common as staying in a hotel room overnight is much more difficult than one might imagine. 

I can distinctly remember various occassions in my childhood when we would go on “family vacations” only to leave my sister at home with a babysitter for the week.  It was tough not really being with my whole family, but we also knew it would be easier on us all to leave her at home where she was comfortable.  Granted there were those times that we tried and have plenty of memories to prove it.  I remember one family reunion trip to Kentucky where we only stayed overnight for one night.  My sister didn’t understand at all and kept trying to put on her shoes to leave.  We had a small suite with two beds and a pullout couch in it, and my sister got her own bed.  My mother and I were in the other bed, and my Dad was on the hide-a-bed.  I can remember laughing all night with my mother at how my sister would make noises and raise up her head wondering what was going on and why she was there.  We tried to calm her throughout the night, and we all finally got a little rest, but it was definitely one for the memory books in the “family vacation” department.  

Then when we arrived at the reunion destination the next day, she didn’t understand that either.  She didn’t know many of the people in attendance and wanted to stay in the car and listen to music in the air conditioning instead of being in the hot outdoor pavillion on that summer day.  Though we were all bothered by the outbursts she would make when with the crowd of “strangers,” looking back, she probably had the right idea of staying in where it was cool. 

I’m so pleased when I hear that her group home goes on outings from time to time to small theme parks and museums around where she lives.  It’s always amazing to us how well they say she does on those excursions since it would be next to impossible for us to get her to go somewhere like that with us as a family.  My mother longs for the time she could take my sister on a special outing like that, but there again, it would be a break in the routine she knows with our family.  When she’s with Mom, she knows she gets her haircut at the mall, sometimes goes shoe shopping, and goes home to eat fun food and hear my mother sing in her bedroom.  That is the routine and the cycle she has nearly every weekend.  If we were to try to change it up, it would disrupt what she has grown accustomed to in her little world.

I say all of these things to simply encourage those with special needs loved ones that you can have a special “summer vacation” right in the comfort of your own home.  Spice up things a little with a cookout at home where your loved one is already comfortable.  Bring the family reunion to them.  Add fun summertime activities like making homemade ice cream or sno-cones instead of having to go out.  Try taking new car rides or even wagon or four-wheeler rides in exchange for theme parks.  If things get a bit too hectic and confusing for your loved one, don’t get discouraged.  Just know that you tried, and you certainly made plenty of summertime memories you’ll never forget!

When I was a child, my sister attended public school, just like I did.  We were so fortunate to have a great forward thinking school system that helped her a lot in my hometown of Cleveland, Tennessee.  However, during the summer months, parents of disabled children look for things for their kids to do just like parents of any children would research summer camps and lessons of various sorts.

We were blessed to have a local church start a program called J.O.Y. School in 1987 when my sister was nine-years-old.  That program, though it had a minimal cost, ran through the months of June and July and was a tremendous benefit to my family and my sister.  They went swimming at the local YMCA, visited the library and did other fun things throughout the day just like normal kids might do at a summer day camp.

I’ve often wondered if there might be something similar locally for children with disabilities, and I saw it this week in our newspaper.  There are spots for 50 developmentally and/or physically disabled children ages 6 to 17 to attend an Easter Seals Challenge Camp for six or twelve days at no charge through Kids Central, Inc. and the Florida Department of Children and Families.  While, the time is short, and the spaces are limited, kids do get to stay overnight in a real camp experience, no matter their disability.

I applaud the Florida Easter Seals program for giving opportunities to kids who are often overlooked and only hope that more and more programs will pop up in our area and others around the country specifically for kids and young adults with disabilities.  Happy summer break!

Yesterday was a new adventure for us at ARC Marion, when we welcomed four area rock-n-roll and punk bands made up of teenagers for a battle-of-the-bands type competition.  Essentially, during our Hog for Hope events, we have this enormous tent in the field for nearly two weeks and had nothing planned to do with it.  So, we decided to try something new. 

The idea behind Kids of Rock was to welcome folks from the community who might not attend our other events to join us on campus for a fun, free event.  They were mixing and mingling with our developmentally disabled clients, and the band members welcomed our clients’ dancing to their music.  They even obliged the autograph seekers as well.  It wasn’t intended to be a huge money maker for the Hope Foundation, but we did manage to raise a few funds to add to our Hog for Hope totals.

We could not have done it without the assistance of: the City of Ocala (who partially sponsored the event and helped pay for the cash prizes to the winning bands), Church at the Springs in Ocala (who loaned us a lot of the sound equipment), Domino’s Pizza (who gave us a great deal on some pies), Winn Dixie (who gave us the hot dog buns), Miss Marion County Teen USA Tori Petry (who served as emcee for us), the volunteers who worked sound, cooked hot dogs, sold tickets and food, and set-up and tore down… and of course the four great bands that participated in  the event: Age of Lions, Fear to Fail (runner-up), It Hit Us (WINNER), and Virtual Volume. 

Though we had hoped for more bands in the competition, the crowd didn’t seem to mind.  We welcomed a couple of hundred folks to our campus who may not have ever been here before, and after the response we received, we might just try this event again… we’ll see.

In Tuesday’s blog I mentioned the link between Alzheimer’s and Down Syndrome that is so clearly predominant.  ARC Marion has 50 clients who live in our care 24/7 in group homes around our community, and many of them are Down’s clients.  Of those, at least a dozen have been diagnosed with early-onset Alzheimer’s, even at the early ages of their 30s and 40s.  So, a year ago, ARC Marion decided to take action and serve those needing unique specialized care in an even better way.

With a newly remodeled group home located on our campus, we started transferring and moving clients into that home who have the early-onset diagnosis.  With hand-picked residential staff receiving Alzheimer’s specific training as well, we can better assist those living with us as they begin the process of dealing with this disease of the unknown.  We are hoping that we will serve not only as a model for our community and our state but hopefully even the nation as we embark on this new territory of helping all of these clients together, in one place, right here on our campus.

Certainly it doesn’t come without a cost.  The money for training for the staff as well as the future medical needs of these individuals is still unknown and not readily available.  We are actively searching for grants and other information we can to help the most vulnerable of populations, the developmentally disabled, as they become even more vulnerable as each day passes.  However, with each challenge, we are meeting it head on, and we are willing and able to help those who need it the most… just another way we are advocating for special people!

In the very recent past I’ve become aware of a link between two well-known diseases that those who aren’t closely associated with individuals with Down syndrome would not be aware.  That connection is between Alzheimer’s and Down syndrome. 

According to WebMD, the genetic makeup and immune system abnormalities of those with Downs can cause them to have higher rates of various illnesses, one of which is Alzheimer’s.  I knew it was likely for people with intellectual and particularly developmental disabilities to have susceptibility to other medical problems, mainly due to the deformities some of them face with their bodies.  However, a condition like Alzheimer’s seems so different than your typical breathing problems or cataracts. (also listed on WebMD as some of those “various illnesses.”)

Those with Down syndrome may be diagnosed with Alzheimer’s as early as their 40s and 50s whereas normal adults don’t typically receive the diagnosis until their 60s.  In fact, estimates note that as many as 25% of Downs clients over age 35 may have signs of Alzheimer’s.  The likelihood of someone with Downs developing Alzheimer’s is three to five times that of the average person.

With such a link between the two medical issues it seems that more education, training and research can be done to determine how to treat each condition both separately and together.  I feel that since the link is so predominant, researchers could be on the brink of learning a lot more about each condition… it’s a hopeful and exciting time to see what sorts of new treatments and potential cures are on the horizon!

A few months ago, I posted information about our annual Hog for Hope  fundraiser, and how excited we were to get started with the specifics, in this, our ninth year.   The events wrap up on Friday, June 4 with a BBQ catered meal sponsored by Outback Steakhouse, live blue bands all night long, and the winner of the custom painted Harley-Davidson motorcycle being announced at 9:00 pm.  Annually, we sell 600 tickets for the event, and we are at an all-time record fast pace in selling them this year.  There’s just something enticing about the odds, the one-of-a-kind bike, and helping a good cause.

Two such examples of the latter come from two recent bike ticket purchasers.  One came via email.  He said, “I look forward to this every year, to help our special needs population.  You, your staff and all those involved do an outstanding service to those in need.  So thank each and every one of you.  Each year I hope for a hog, and if not this year then next year.” 

We received similar comments from the winner of last year’s bike.  He had participated in our bike events, the Poker Run and had purchased tickets for several years with the same idea- if not this year, then next year.  Luckily, his ticket was pulled last year!

We have a great group of people over the years who have purchased our tickets to help the developmentally disabled in our community, but one new ticket purchaser this year said he was buying it in honor of  his niece who lives in Nashville, TN with Down syndrome.  No matter the reason, we are proud of our cause and grateful beyond measure to those who support us year after year.  Thank you to all of you!  For reading this blog… for participating in our fundraisers… and for advocating for special people all year long!

**It’s not too late to buy a ticket for the Harley or for the BBQ.  Visit www.hogforhope.com for more details.

Recently, the nation paused for a moment of reflection during the National Day of Prayer.  An organizer of a group on Facebook, Betty Greene, sent a message to participants that day that struck my attention.  Though I don’t know her, nor have I ever met her, I feel her message is worthy of reposting.  She wrote: “I have a grandson who is in a special needs class.  As I walked out of his school today, I saw so many wheelchairs for children who cannot sit up on their own.  Since Mother’s Day is coming (this was sent the Thursday before Mother’s Day), please keep the mothers and fathers of all our special needs children in prayer.”  She continued, pray, “Father, give them your powerful and loving wisdom.  Supply all their needs including good people who will help take care of them when Mommy and Daddy just need a break.  For those of us who have never had a special needs child, we just cannot imagine what it is like.  Most importantly, (we pray for) life and healing for the little ones… that they would be healed and whole… amen.”  

No matter your level of faith or lack thereof, I trust you can sense the heart behind this message, from a grandmother who truly sees the parents of special needs children as beacons of light to those in need.  Whether you choose to pray or simply take time to reflect on those less fortunate, consider the families of those with special needs from time to time.  It sure can’t hurt!

For the past eight months, I’ve been writing about everything from my own personal experiences growing up with a developmentally disabled sister to other people far off and their decisions.    I’ve talked about how thankful I am to have healthy children, and what people who have children with disabilities should do in the form of early intervention.  It’s pretty easy to separate yourself from the topics, no matter how passionate you are about them.  Sometimes they hit home a little more than not.  I recently heard one of those stories that I usually just write about people I don’t know, and let’s just say, it “hit home.”

Karla and Caleb Bolanos are dear friends of mine and have been for more than a decade.  We went to college together.  Karla and I worked together before we realized what we wanted to do when we grew up, and before either of us were married (She now teaches elementary school, and well I’m here).  We’ve shared laughs and cries, played card games for hours on end, and they both even performed in my wedding. Karla sang. Caleb played his trumpet.  Though we live 500 miles away, we stay in touch every few months if for no other reason than to just say hello. 

It was no wonder that Karla called me several months ago after she found out she was pregnant with her second child to ask me what sorts of things she might need with potentially two in diapers.  (Those who know me know that I’m becoming somewhat of an expert on the topic!)  Nevertheless, I offered advice to her, and we continued that strong bond that only years of friendship can give you. 

Karla called me a few months after her great news to tell me that she was having a little girl, but there were complications.  The doctors noticed on the ultrasound that it appeared her new baby, which they had already named Hope, would have a heart condition that might require open heart surgery a few months after birth.  But even the suspected bad news they received wouldn’t stop them from their faith and belief that everything was going to be o.k. no matter what happened.

She called me when she was going to the hospital for an appointment, just to talk.  We talked a lot through this pregnancy of hers.  Parents of multiple small children seem to have something in common to which not many others can relate.  Karla and Caleb’s little boy, Sloan, is right between my two boys in age, so I understood all of the growing concerns about the soon coming phenomenon of two under three.  She called me after Hope was born to just say how beautiful she was.  Then, a few weeks later…

I received a link to a newspaper article about them in my hometown publication in Tennessee.  The title: “Parents see Upside to Down Syndrome.”  My mouth dropped.  Not once during all of our many phone calls throughout a nine month pregnancy did Karla ever mention that Hope was going to have Down syndrome!  I called her immediately to talk, even before I read the article.  She said she never mentioned it, because it never really came up.  She just assumed I knew as many others already did, and even if I didn’t know it didn’t make a lot of difference.  Hope was perfect in their eyes with no explanation needed.

Then I read the article.  I couldn’t help but tear up as I thought about the roller coaster of emotions they must have felt when the doctors told them what was ahead.  When the doctors said to them “You may decide to keep the baby or not keep the baby.”  Karla recounts that there was never an option not to keep her, and I knew that to be the truth first hand. 

Like I said, Karla and I have been friends a long time, and I distinctly remember the day while lying on floats in my parents’ backyard swimming pool when she shared with me that she had an abortion when she was a 15-year-old field hockey player in Maryland. She was the daughter of a pastor and didn’t want to shed a negative light on his ministry, so she didn’t tell anyone for a decade or so.   At the time she told me, she was dating Caleb, and he was having a tough time dealing with the issue himself.  Now that they’ve been married for nearly 10 years, it’s simply a part of their story and their testimony. 

They are looking forward to seeing little Hope grow and flourish.  They are already planning to be a part of Tennessee’s Early Intervention system so that she can be the best she can be.  They also can’t wait to share Hope with the world.  You see, both Karla and Caleb are professional musicians with CDs and a traveling music ministry.  They’ve even come to sing and perform in Ocala a few times.  This new little bundle of blessings will only add to their story.  Karla says “Every person with Down syndrome I’ve ever met is so loving.  You can really see God’s love shining through them.  And that extra chromosome they carry just makes them extra special.” 

Hope is an extra special little person, and I think her parents are pretty special people, too.

As we are in the height of fundraising season at the Heart of Florida Hope Foundation, the fundraising arm for ARC Marion, it’s always interesting for me to pause and reflect on just how we can reach people with our message.  Sure, we have fun events in which anyone would want to be apart such as our annual custom Harley-Davidson drawing, annual golf event and annual celebration at Golden Ocala country club, but there has to be another way to make people see who we are, and what we do.

It comes down to this… we are in a unique niche.  Simply stated, the developmentally disabled are a people group who need private funding in Florida more than in any other state in the U.S.,  yet they aren’t always the ones thought of first when funds are available to distribute.  I look at our most recent United Way community campaign and see those associations receiving the top dollars allocated this year.  Understanding there was much less to go around while many more services needed funding, I see programs for senior adults, children, the homeless and centers for domestic violence taking precedent over those with developmental disabilities.  In fact, an ARC Marion program that has been funded by the United Way for decades is not receiving anything this year. 

I don’t cast blame on any one person or entity for the lack of money coming in.  However it just shows me time and again how much harder we have to work to help people realize the need, and the need is great! 

As we wrote several months ago, the six degrees of separation from someone with developmental disabilities still exists.  Nearly everyone we come across has a sister, cousin, friend or neighbor with DD and yet often it’s easier to give to an out-of-town mail order charity looking for a few bucks.  I urge you to consider the needs of the people right in your own community, especially those with the least amount of resources and abilities.  That probably brings you right back to senior adults, children, the homeless, and those suffering in domestic violence situations, however, I hope you can add those with developmental disabilities to the list.  We know we hold a special niche, and we will continue to do all we can to advocate for these special people.

Right on the heels of the famed Kentucky Derby and hearing just how many of our Ocala born, bred or trained horses competed in the event, you have to understand that our little Ocala community is a pretty unique place.  We’re called the horse capital of the world, because there are nearly 1,000 horse farms in our community and more horses per capita than anywhere else in the world.  However, it’s when we combine that rich equestrian heritage with helping the developmentally disabled that truly makes us special.

Recently 20 athletes from across our community converged on the Stirrups ‘n Strides Therapeutic riding center in Citra, north of Ocala, to compete in various disciplines of equestrian events.  Those placing first in their categories advanced to the state of Florida Special Olympic games coming this month.

From the news we’ve seen, many of the participants and their loved ones are truly amazed at the progress they have seen in those with disabilities.  Their whole demeanor seems to change when they are on the horses in competition.  And it’s no wonder, really.  People with disabilities are often cast off and not considered to know or understand a lot.  However, when given the opportunity to shine, they never cease to amaze. 

Special people with special abilities… those are the ones for whom we advocate, and I’m proud to be in a community that sees the need to reach out to all people groups and show them what our little Ocala is all about through the love of horses and horseback riding.  Bravo!

It was in October that we first told you the story about a former ARC Marion Early Intervention Program student giving back to the EIP by building a playset for his Eagle Scout project.  Well, just last week, our local newspaper published the story about Garrett Jackson and another student, Matthew Winfree, who both chose to give to ARC Marion as a part of their service projects for their Eagle Scout awards.  Read the full story here.

Thank you so much to both of these fine young men who are truly living lives of service not only for the community at large, but especially to those who need it most.  You are real advocates!

I had a parent of an ARC Marion client leave my office a few minutes ago, and because she’s also a friend, I told her that her story was “blog worthy.” (in my opinion of course)  Here’s what she’s dealing with right now.

Her son, who has Down syndrome, is nearly 26-years-old.  When he turned 18, they applied for Supplemental Security Income (SSI) benefits, and he started receiving a $449 check each month.  Since he lives at home with his family, and they choose for him to be under a private insurance carrier instead of Medicaid, that essentially pays the premiums for his insurance.  Additionally, because he lives at home with both parents who work, he doesn’t receive as much as someone living on his or her own.

Recently, he got a job through the help of a supported employment coach at ARC Marion.  He has been working 12 hours a week, earning approximately $200 a month, not that he understands the value of the money that he’s earning.  Now that he’s making money himself, his SSI check suddenly drops to $350 a month.  And just this week, his hours on his job are being cut back.  It’ll probably take another couple of cycles to get it all worked out to see if he starts getting the $449 back again.

So let’s just look at this scenario from the big picture.  This loving family has continued to care for their son throughout his 25 plus years with nearly all of their expenses coming direct out of pocket, especially during his first 18 years.  This young man’s disability has not changed as he has aged.  He still needs the same level of care and assistance that he always has.  However, since he’s bettering himself by getting out of the house and working a job, he apparently no longer needs the same level of financial assistance from the government.  What if suddenly his family wasn’t there to help anymore?  Could he live on $550 a month to cover rent, utilities, food, public transportation, etc.?  Or better yet, could he have lived on just the $449 he had been receiving? 

Essentially, people with disabilities can and do receive government financial assistance because of their disabilities, but the level of help they receive is still below the poverty level.  Without loving parents or caring folks in organizations like ARC Marion helping those in need, they would be in a lot worse shape than they already are. 

It never ceases to amaze me how government leaders can fund projects that benefit very few people and still see those with disabilities as a people group to which they can cut funding (I say that as the Florida legislature is currently debating another 2.5 percent rate cut to the Medicaid waiver system—after we already rank dead last in the nation for such funding).  I am not a big government type of person, however, when it comes to those who can’t help themselves beyond a certain level, someone has to foot the bill.  I would much prefer my tax dollars to go to those who need them most than to some politician’s lifetime of healthcare coverage that will keep him out of the one he’s trying to pass over on everyone else.  I’m just asking… does any of it make sense?

The last couple of posts I’ve made refer to parents holding their developmentally and intellectually disabled children back from activities and participating in society as a whole at times.  The segregation has not only impacted the lives of those with disabilities, but it has impacted communities of people who don’t quite know how to act or react to those who are different than they are. 

Nevertheless, there are great examples, like last Thursday’s post, of those with disabilities who are defying the odds and stepping out of their comfort zones to be more than most thought they could be.

Then, there are other examples of the disabled being held back or mistreated.  Some examples of cruelty and inhumane treatment of those with disabilities even now, even today in 2010.  And still other examples of sheltering of the disabled from the community or from advancement simply out of lack of knowledge and understanding. When I see wonderful success stories of clients at ARC Marion and what they have become since coming here, it makes me wonder why others haven’t tried to help their children advance as well.

From disabled individuals in their 50s who have been kept in the family garage with no contact to the outside world, to other individuals of the same age range whose parents simply have cared for them their whole lives without assistance or thoughts for “tomorrow” when Mom and Dad are gone.  From little disabled children being kept in dog crates with hamster water bottles to the parents of a toddler who find out about early intervention only one month before their child’s third birthday, we have seen and helped them all.

Whether parents live in denial about their children’s disabilities or they simply don’t know where to turn for help, we are here, advocating for these special people.  From meeting with parents and their children to simply offer advice to providing full-time assistance to their children, the folks at ARC Marion are here and have been here for 50 plus years.

Fortunately in all of the examples I gave, those children and adults are being served at ARC Marion, and the wonderful staff here is and has made a difference in the lives of each one of them.  I just can’t believe that it really still happens; that some folks treat their own loved ones with disabilities like animals, and there are still others who don’t know who we are or what we can do for their loved ones.   We can only hope through this blog and other outreach tools that those in our community will quickly learn the successes that can come from giving those with disabilities a chance to be more than they ever thought they could be!

Tuesday’s post was about holding children back that are born with disabilities.  I don’t quite get it, really.  I suppose I can understand the protective nature of parents wanting to keep their children from harm and uncertainty, possibly shielding them from ridicule and pain.  However, isn’t that real life?  It doesn’t make it any easier, but it’s still the real world.  People can be mean.  Some lessons aren’t fun to learn, but if we don’t pick ourselves up and dust ourselves off, we can’t go on and get better.

I recently read an article in our local newspaper about a high school student in Pensacola who was born with cerebral palsy who is now participating on his varsity wrestling team.  Before I continue with the story, I want to note how people with developmental disabilities come in all shapes and sizes.  You can’t put them all in one big box nor can they all be treated the same.  There are those with deformities and disabilities that impair their movement and senses like hearing, sight, etc.  There are others with intellectual disabilities that affect their cognitive skills and still others who may qualify for both groups.  As a society, it has become easy to lump them all into the same category of developmentally disabled, however their needs, abilities and disabilities vary greatly.

Now that I’ve gotten that off my chest, I want to tell you about Brandon Skinner, if you haven’t already heard about this remarkable 16-year-old.  According to the article first published in the Pensacola News Journal, he used to be teased a lot in elementary and middle school because of his disability that caused him to limp and keep his hand pinned to his body.  But when he entered high school he had a different plan to combat the insults.  Following an extensive surgery when he was 13, he was able to gain a little more mobility in his right leg and eventually was able to stop wearing leg braces during the day and start running. 

Brandon’s father was a wrestler in high school, and he always found it interesting.  After his surgery he decided it was a path he wanted to take.  His father easily admits that he didn’t like the idea at all. (Sounds like he wanted to hold him back.)  But Brandon’s physician assured his parents it was something he could do.

Now in his second year of wrestling, he has worked extra hard to be competitive, lifting weights all the time, especially on his weaker side, and participated in summer camps and extra preparation in the offseason.  He gets up at 5 a.m. to lift weights, work out or run just to stay competitive.  It has paid off.  His first year, he didn’t win a match, but through his determination and strong will to succeed, he won five matches in his sophomore season. 

Brandon Skinner is an inspiration to anyone with a disability and a will to be more and do more, all because his parents didn’t pin him down.

I have to privilege to work alongside wonderful individuals at ARC Marion who care deeply for the clients served here.  They take great pride in their work and rejoice in every “victory” in a client’s life and feel pain and anguish when clients are hurt and sad.  Great things happen here every day.  Too many to even recount, so when I hear of parents of the developmentally disabled in our community who are reluctant to have their children here, at times it gets my blood boiling. 

Recently some local developmentally disabled students currently in the school system toured the ARC Marion campus.  One of them proudly announced that she was 22 years old and still had not “graduated” to come to ARC Marion  or any other service provider in the area (ARC Marion accepts individuals 18 and older but Medicaid waiver funding doesn’t kick in until age 22).  When asked why she hadn’t yet graduated, she replied that her mother didn’t want her to leave the “safe” environment of school.  What that equates to in my mind is keeping the child from excellent job skills training and the potential for employment in the community or even one day a supported living environment where the girl could be on her own in a self-sustaining situation. 

I’m truly amazed every time I hear that there are families holding their children back from opportunities that could forever change their lives.  It’s horrible when you hear of normal children who weren’t given a chance, but when there are great possibilities out there for those with disabilities to progress, it’s even worse to hold them back.  Society already expects them to be behind, so as they advance, the accomplishments are more profound and visible. 

I charge any parent of a developmentally disabled individual to not give up on that child, no matter his or her age.  It’s not fair to that person, and it’s not fair to society.  Don’t hold them back!

No sooner did I post the blog about Brian’s League did I hear about yet another amazing baseball organization in our local community that is catering to the needs of the disabled children right here in Marion County, Florida!   The organization called “Dream Catchers” is a baseball league backed by Little League International for disabled children from Ocala ages 5-18.  The limit for this league is only 20 players- two teams of 10 each, and the founder, Patricia Kenny, has paid for much of the costs out of her own pocket including the equipment, baseball caps and insurance.

 Her reason for getting involved is two-fold.  According to a recent story in the Ocala Star Banner she noted her desire to leave a legacy for her 7-year-old autistic daughter, Madison.  Additionally, she was motivated by the passing of her husband in 2008 and her love for baseball.  Through her loss, she decided to give back, to do more to make people happy. 

 Like the Brian’s League mentioned previously, many sponsors, supporters and volunteers have stepped up to help support this wonderful cause.   Additionally, the league is just for fun as no score keeping and no outs will be kept.  I can only hope that those volunteering to help with the games at Jervey Gantt Park in Ocala will receive the great reward of happiness in helping others.  I also truly desire that the children participating in the league have much joy and satisfaction in all of the accomplishments they achieve, big and small.  Children, have a ball, playing ball!

For more information about Dream Catchers in Ocala, call (352) 245-6171.

In our quest to find sponsors for our annual Hog for HopeTM events, one new local company stepped up to the plate at the Silver Level.  As a first time sponsor, that’s a pretty big accomplishment, but now we know why.

Recently I noticed an ad in our local newspaper for a Marion County Baseball League for Disabled Children.  After visiting www.briansleague.org I learned that the business forming this Brian’s League is in fact the very same sponsor mentioned above.  Telecom Service Bureau in Ocala is currently forming a baseball league for children with any type of disability; whether it is a mental, physical or sensory disability.   What’s their reason for creating this “wonderful place for kids to be kids?”  Brian Feo, the 15 year old nephew of Telecom Service Bureau’s owner, who has a condition called Sturge-Weber Syndrome and has been diagnosed as over 75% blind.

According to their Web site, they hadn’t heard of anything like this available in Marion County before and have been met with a growing enthusiasm by both schools and parents alike. In fact, Brian is really excited and has already picked out teams for the league.

For Brian’s there will be no tryouts, no practices and no score keeping – all the kids will play! They will have volunteers to assist each child with batting and running and additional volunteers serving as catcher, pitcher and in the outfield.  Most importantly, there will be no registration fees or costs, whatsoever, to the children and their families.

I can’t tell you how excited I am to learn about this unbelievable venture by a local company simply because they saw a need to help some kids feel included in sports.  As a baseball lover myself and the wife of a former college shortstop, my heart leaped when I read about it online.  I hope that others will take the opportunity to check them out, too.   Their ad in the newspaper was pretty small, but what they are trying to do is huge!  They are even planning an awards banquet on June 5 where every child will receive a trophy for participating. 

Seems like everyone involved with this wonderful endeavor is advocating for special people everywhere!  I wish Brian’s League much success this year and for many years to come!

Over a decade ago when autism was rarely talked about except among parent circles with like-minded children, educators at Lee University in Cleveland, Tennessee started a new project with the autistic child of a Lee alum in Florida.  In 1999, Lee students traveled 500+ miles to interact and help the child and family, who eventually moved to Tennessee so students could work more closely with their child.  The case study helped develop the Lee University Developmental Inclusion Classroom (LUDIC) located on the University’s campus in the heart of the Tennessee valley.

Lee’s LUDIC program works with their local school systems to serve 23 autistic students ranging in age from 5 to 10 years old on full-day, half-day or part-time schedules.  Students of the Helen DeVos College of Education (also named for a Floridian) receive practical hands-on education when working with the special children, a key component for preparing the teachers of tomorrow to effectively teach autistic students. In fact, every Lee student pursuing an education degree works in the LUDIC lab school, not just those studying special education.

LUDIC director, Tammy Johnson, notes in articles how important early identification and early intervention are to making the best progress in children with autism, something we’ve discussed in this blog as well (here and here). 

The University recently received one of only six 2009 President’s Higher Education Community Service Awards for its dedication to service-learning and civic responsibilities.  The federal designation came in part due to the 160 Lee students who volunteered over 4,000 hours last year in areas such as autism camp, education planning and family support services in LUDIC. 

In 2003, Lee began hosting the annual Southeastern Autism Symposium that features all areas of autism from communication to sensory development, behavior to healthcare and even adult autism. The 2010 event, titled “In Autism: the Handwriting is on the Wall,” will take place on June 22-25 on the university’s campus. 

It’s good to know that there are colleges and universities, like my alma mater, that are recognizing the need to train tomorrow’s educators to be sensitive and effective teachers for autistic children.  Now that’s what I call Advocating for Special People!

Photo ESPN.com and Getty Images

April is autism awareness month, and I can think of only a few causes that have caught on as quickly as the color blue and the blue puzzle pieces representing Autism Speaks, an international organization of advocacy and research for the disease.  The Empire State building turned “blue” last week in honor of the month, and the symbolic blue puzzle pieces can be seen everywhere from Jim Calhoun’s lapel (University of Connecticut men’s basketball coach) to the thousands of advocates participating in one of 70 autism walks in the U.S. and Canada this year. 

According to their Web site, the organization formed in February 2005 by two caring grandparents of a child with autism with a common goal to fund research for causes, treatment, prevention and a cure for this disease that affects 1 in 110 children and 1 in 70 boys in the U.S. alone.  While the information, education and advocacy are increasing, there are still plenty of answers needed as to why this disease has been spreading like wildfire among American children and elsewhere.

Parents who notice a change in their young children’s behavior and given the autism diagnosis are sometimes referred to the Early Intervention Program (EIP) at ARC Marion.  Children from birth to age three are taught through the use of a play-based curriculum that addresses specific needs of each child.   Those attending also receive speech, physical and/or occupational therapies as needed.  Through the therapies, interaction with other children, and supervision by excellent teachers and aides, many of the children attending the program during the early developmental ages are helped to the point that they are mainstreamed into public school classrooms without the need for special education as they age.  Some are even retested to see if they were originally misdiagnosed due to the progress they achieve at EIP.  (see this month’s Family Times magazine article to see more about autism locally)

However, EIP only reaches 100 children a year in our community with over 42,000 school-aged children, and EIP is the only program of its kind in Marion County.  Granted, making a difference in those children’s lives, even if only just a few, has impacted the greater good for sure, but as more and more children are diagnosed, the need for specialized education for these unique children will only increase.  That’s why educating the public and working toward inclusion are so vitally important.  With more and more children receiving the diagnosis, even more people in communities everywhere will have to realize just what that means for society and for the education of these special children. 

Most important is the advocacy needed for parents, children and the cause as a whole.  Not turning a blind eye to this rising epidemic is just the start.  Becoming an educated citizen is the next step.  Contributing to the cause, whether at home or abroad, can help, too.  Locally, the EIP at ARC Marion is a good place to start.  Won’t you consider becoming an advocate for special people, namely special little children with autism, today?  As their mission reads…Autism Speaks.  It’s time to listen.

While our Florida state lawmakers continue to do things that baffle me, I’ve got a new one that should ruffle your feathers, too.  The Florida Agency for Healthcare Administration who regulates and oversees service provider agencies across the state for everything from hospitals to nursing homes, mental health centers to those facilities serving the intellectually and developmentally disabled (DD) annually contracts with an outside firm known as Delmarva to provide quality assurance auditing of DD facilities. 

The concept of the audit is to do personal interviews with DD clients receiving services to ensure that they understand their rights as individuals and to check-up on the facilities administering the services to the DD clients.  Over the years, the questions have been relatively simple to understand for these individuals who all have IQs of less than 70 (the main requirement to receive Medicaid waiver services).  However, this year is going to be quite a bit different.

Allow me to give you a sample of some of the questions that will be asked to clients at DD service providers across the state this year.  Have you been to a doctor in the past year?  What kind of doctor?  A cardiologist? Endocrinologist? Gynecologist? Podiatrist? Rheumatologist? Urologist? You get the idea.  The questionnaire actually lists 19 specialties of physicians by their name rather than by what they do.  I worked in the medical field, so I know what kind of doctors do what.  However, I can guarantee you that the general public with IQs over 70 and higher couldn’t answer that question if it was posed to them.

Then there’s the medication part of the survey.  What kind of medications to you take?  Do you take over-the-counter medicines? What kind of side effects do you have from medication?  Are you one seizure meds, and were they prescribed by a neurologist?  How about psychotropic drugs?  Were they prescribed by a psychiatrist?  And then it goes on to list 50 different medications by name that the assessor is going to ask the DD client specifically about his or her meds.  Now I ask anyone over the age of 50 on blood pressure and cholesterol medications or more what the names, doses and side effects are of those drugs?  Do you know?  Or do you have a piece of paper in your wallet that tells you the answers?  Now ask me how many of our DD clients keep that same type of information with them at all times?

I understand the purpose behind an audit.  It’s be ensure that the DD individuals in this state are being cared for appropriately and treated with respect as they should know their rights as human beings and citizens of this nation and state.  However, to ask them questions that most individuals with educations couldn’t answer is a bit absurd and naïve.  Hopefully ARC Marion will once again come through the audit with flying colors, but Delmarva auditors sure are going to have a tough time using this assessment tool!

Sitting before the Florida House and Senate right now are two separate budgets.  The House budget cuts funding for the Florida Medicaid waiver system for providers by 10% across the board, while the Senate budget plan has a 6% across the board budget cut.  I just don’t get it. 

It doesn’t take a Rhode’s Scholar to know that the Florida economy is hurting.  Tourism is down, because people don’t have the money to take vacations.  Home sales are dropping, because the housing boom that was has come and gone.  Unemployment is at record highs- 14% in our county alone- and the end doesn’t seem to be in sight. 

So what do the elected officials in this great state propose? The Florida Congress is trying to use federal match monies (FMAP) that come to the state from the federal government for developmentally disabled clients to reallocate those monies for other projects that are lacking funding.  Taking the money from those who have no way of supporting themselves is not only absurd, it’s immoral and unethical. 

The proposed reductions to the Home and Community Based Services (HCBS) waiver could potentially cost 2,000 or more employees their jobs across the state, many of them receiving minimum wage.  Additionally, if 10% HCBS rate cut occurs, currently before the Senate, potentially 350 service provider agencies across the state may have to close their doors.  The funding currently for HCBS is $112 million below the rates in ’07-’08, so those that have stayed open are doing so by the skin of their teeth.  Another cut could be devastating to the developmentally disabled population in our state and the service providers assisting them every day.

I just keep going back to that beautiful January day when President Obama came to Tampa and gave $1.25 billion to Governor Charlie Crist out of the Economic Stimulus plan.  The money was designated to go toward areas of need currently faced by the state.  It was awarded specifically to tout Florida as being on the cutting edge of alternative transportation options so that we could have high speed rail from Tampa to Orlando.  The President came here that day with a “check” for roughly 16% of the overall price tag of $8 billion for the project claiming new jobs would be created.  Well what about doing things to help save some other jobs like those of the staff at group homes and service providers for the disabled?

Florida is facing a multi-billion dollar budget shortfall over the next year, so accepting a grant for something that we can’t pay for is irresponsible.  It’s also ridiculous to think that it is happening right when our state’s most vulnerable citizens’ funding is being cut drastically.  We’ll hold our breath over the next few days as the congress continues to debate the budget and only hope and pray that they don’t cut, cut and cut again, again!

Whether you agree or disagree with the legislation that was voted upon by Congress and signed into law by the President this week, there’s one thing clear to me.  Healthcare for the developmentally disabled is not going to change for the better nor has it even been discussed! 

First of all, allow me to step on my political soapbox for just a moment.  The heavily touted healthcare bill isn’t going to give healthcare to everyone in America.  It’s going to give health INSURANCE to everyone in America or force it on them even if they don’t want it.  Healthcare and the health insurance that sometimes funds it are privileges to everyone in this great country, and now they are going to become unfunded mandates by the federal government.  

Unfunded mandates are nothing new to us.  We in the nonprofit world of serving those with developmental and intellectual disabilities understand unfunded mandates quite well.  Take for example the eight hours of mandatory annual training on top of the initial 16 hours of training that all employees have to go through simply for working with special needs individuals.  When ARC Marion gives employee training, there are NO dollars coming into the facility as the clients must all stay home for the day.  For those 50 clients that live in ARC Marion group homes, that’s a full day that has to have staffing in the group home whereas usually there’s an 8 am- 3 pm window with no staffing. 

What about the client to staff ratios that are mandated per client?  While the funding continues to decrease, the ratios aren’t changing.  It’s not like all of a sudden Johnny can be put in a classroom with six other clients if he is funded for 1:2 ratio of staffing simply for us to help save on costs.  Or what about the annual medication validation that is $6 per employee that ARC Marion pays plus the time it takes to recertify staff annually so that they can assist clients taking self-administered medication.  Those are things done at ARC Marion that we have to do and will never have funding to pay for them.  I digress.

The real thing that I haven’t heard discussed in the bill is a change to medical coverage for those who are developmentally and intellectually disabled.  You see, the lawmakers keep comparing this wonderful new system to that of Medicare that is allegedly working well for senior adults.  So the new law is going to put even more low income families into the Medicaid system to help them receive healthcare as well.  Then there’s the Medicaid Waiver system that all developmentally disabled individuals are in (not mentioned in the 2,000+ page healthcare bill at all to my knowledge) that sort of puts people at the bottom of the healthcare totem pole.  Yes, these special people have the ability to receive healthcare that is “paid for,” however, finding physicians who are willing to accept the payouts is another thing all together.  Doctors by the droves simply don’t take Medicaid much less Medicaid waiver due to the low payouts and amount of time it takes to get paid.  So, unless the healthcare bill includes mandates that private doctors have to take Medicare and Medicaid in order to practice medicine (which seems a bit illegal to me), giving folks access to a payment plan will not solve the problem if there’s no one to willing to accept the pay.

As far as I’m concerned, there are a few items in the bill that are positive, but for the most part we are back to square one as funding is approved with limited numbers of  medical doctors available to take the payments.  And let’s not even mention dentists who take Medicaid as there are very few.  Then again, dental health isn’t part of the healthcare bill either.

It seems to me that there are a lot of people who need to receive healthcare coverage of some sort who have been unable to receive it for one reason or another.  Then there is a whole other group of individuals like the special people served at ARC Marion who will never be able to pay for, work for, or afford healthcare coverage to fully care for their every need.  Isn’t that something we should be spending long hours on a Sunday night talking about?

I came into work one day this week so excited about something I read the night before.  When one of my little guys was ill, I turned to The American Academy of Pediatrics, “Caring for your Baby and Young Child” book that I received as a member of the Publix supermarkets Baby Club.  While nearly everything I have read in the book has been extremely helpful for this young mom, one piece I read has actually frustrated me more than helped.

In a highlighted purple box on the bottom of one of the pages noted if your child had been diagnosed with special needs, here are a few places where you can turn for help.  Immediately I was excited to see there could be new resources at my disposal that I could share as an advocate, so I read on.  It says that there is a program for children with special needs where they can receive special computer screens, keyboards and computerized voice programs through ERIC, the Clearinghouse on Disabilities (though I really don’t even want to post the link…).  Additionally it mentioned the Starbright Foundation who does the same sort of thing for children who are seriously ill.

I came into work with an energy and excitement only to visit the ERIC Web site and find it a clearinghouse alright.  It’s just a generic Web site with several sponsored links, all of which could be helpful if it even told what ERIC was or furthermore why these are sponsored links and why was this program mentioned by the AAP in the first place?  In fact, several of the “links” weren’t appropriate at all.  One was for an erectile dysfunction Web site, and several of them were for gifted programs.  Yes, the Florida school systems classify special needs education and the excpetionally gifted classes all as ESE  (exceptional special education), though I’ll never quite understand why, but this clearly isn’t want this Caring book made it out to be.  My bubble burst.

Then I thought I’d check out the Starbright Foundation to at least see if they lived up to the billing they received.  I was redirected to the Starlight Foundation, a program I had at least heard of, but the type of assistance they offer is for those with medical illnesses like cystic fibrosis, asthma or sickle cell anemia not intellectual or developmental disabilities.  I struck out again. 

I only mention my experience here to say, don’t be fooled by things that appear to be too good to be true.  They probably are.  Also, don’t give up hope.  It’s possible that at one time the ERIC Clearinghouse may have attempted to be something they aren’t now.  All I can say is, if a resource comes available that offers ways to get special equipment for those with special needs, I truly hope I find it, for the sake of the clients ARC Marion serves.  Now, that would be good.

Day in and day out I have the opportunity to witness little miracles, and by “little” I mean in the literal sense as the children about whom I’m speaking are all under the age of three.  In the ARC Marion Early Intervention Program(EIP), children with varying intellectual and developmental disabilities attend classes five days a week while also receiving weekly occupational, physical and speech therapies as needed.  Many of the children come to the program with social problems, too, and what happens here is truly amazing!

I receive quarterly success stories from all of the ARC Marion programs, and it’s so wonderfully refreshing to read the tales of children who leave EIP totally transformed.  Here are a few highlights over the six months:

A little boy started the program when he was a close to 18 months old and wouldn’t walk.  He would only crawl when he began attending EIP.  It only took a few months for him to be interested in socializing and communicating with his peers face to face, so he eventually began walking independently way before his second birthday. 

One little girl began the program having a hard time focusing.  She wouldn’t feed herself, wouldn’t sit at a table and could not follow directions.  After only a few months, she started being able to focus during a variety of activities, sat at the table for meals and small group activities, was learning to use a spoon to feed herself and was quite social with the other children in her class.

A little boy started the program at 23 months old and couldn’t talk.  He had trouble focusing for any length of time and moved from activity to activity abruptly.  At the time of his graduation on his third birthday, he had become the class helper, speaking in one and two word phrases and was staying engaged during his small group sessions under the direction of his teachers to whom he listened closely.

Finally, a little boy started the program with no language skills at all and had a tough time transitioning into an environment with other children.  For several weeks, he would cry when he was in the classrooms.  Slowly, he started interacting and playing with the other boys in his class.  Through language therapy, teachers began noticing him talking to his friends and eventually to them.  Upon graduation, he will only need intermittent language therapy from the local school system.

To some, these little stories may not seem like a lot, but to a parent of small children, I can’t imagine what it would be like to be facing situations like these with my own children.  I am blessed to have healthy little boys, but in this day and age where one in every 110 children is born with autism, a condition many of our EIP children have, I wanted to share some stories of hope and inspiration for parents who may have received an unfavorable diagnosis for their children.  By starting early, children are resilient little creatures who can learn and grow and develop far beyond what some may give them credit.

The EIP “graduates” roughly one dozen children a year into the mainstream classroom.  What that essentially means is 12 children this year who turn three-years-old will not begin public school in a special education classroom.  They will mix and mingle and learn with other students their age who have been classified as “normal” since birth.  I shared an example of one of those exceptional EIP graduates a few months ago.

Our local Early Learning Coalition through a partnership with United Way has a program called Success by 6.  They have laid ground rules indicating that those first six years of life are so detrimental to the overall learning of any child.  I would take it a step further to say that the first three years of life are key for any child diagnosed with a disability.  So, parents, if you have a child in need of assistance at an early age, find a reputable program like the Early Intervention Program at ARC Marion and just watch the limitless possibilities your child can achieve.

In recent blog posts (here, here, and here) I havepretty vocally noted my appreciation for all the Sarah Palin is doing to draw attention to the special needs community.  She’s being praised and ridiculed, uplifted and degraded by the masses for her strong stance against the use of the word “retarded” in a derogatory fashion.  It leads me to question my own opinions about her advocacy for these special people, being the polarizing figure she is.

In fact in a recent Ocala Star Banner letter to the editor entitled “A shining star?,” the writer took six paragraphs of newspaper space to refute her intelligence, demean her speaking style (using Tina Fey’s Saturday Night Live imitations of Sarah as her own words), and of course denounce her use of hand-notes via ballpoint pen.  But the last paragraph by the writer, Seth McClellan of Ocala, is what caught me the most.  He writes, and I quote:

“Darn that Obama and his machinery!  He should “keep it real” like Dubya did and show the world just how retarded America can be.  (It’s O.K. Sarah, I’m being satirical like Rush!)”

There it is again.  Whether in use for satirical purposes or not, she’s being linked to the cause of advocacy for people who can’t defend themselves.  In this instance it is a negative reference-obviously-but ordinary people are starting to listen and get it.  Whether Mr. McClellan uses the word “retarded” on a daily basis or not was of no consequence until Sarah started making a fuss over it all.  Now even he has taken note as I can only assume countless other thousands of folks are doing the same. 

This fight to stand up for the “least of these” is going to be a hard struggle for many years to come.  Advocates and parents started over 50 years ago when they began schooling their children with special needs instead of institutionalizing them.  However, today, the fight continues for these special people, and now that there is a vocal advocate who is essentially a household name, many more people are listening.  Only time will tell whether people’s behavior and actions will change because of this new revelation that maybe calling someone “retarded” is a bad thing.  I can guarantee that anytime the word slips out of their mouths, they will at least think, even if it’s after the fact.

So is Sarah Palin too polarizing of a figure to be the spokesperson for the special needs community?  Suffice to say people are listening, talking and even writing their local newspapers because of her.  As the old adage goes, even bad press can be a good marketing tool to draw attention to your product.  I say, whether the topic itself is polarizing or not, we’ll continue to advocate, stand firm and hold fast to our beliefs for these special people… Sarah and me!

The Florida legislature just went into session last week, and there are already very pertinent pieces of legislation pending that could greatly affect the citizens ARC Marion serves and the developmentally disabled across our state.  In fact, in the next 14 days, the Senate and House Appropriations Committees are considering two options to further reduce funding by up to 15% for the developmentally and intellectually disabled. (Remember, Florida already ranks 50^th out of 50 states for Medicaid waiver funding for these special people!)

1)      They want to bundle services for clients so that only 30 hours a week would be funded for adult day training (ADT), supported employment, supported independent living, respite and companion services.  The 30 hours is the amount of time a client attends ADT weekly alone.  However, many clients receive and NEED additional supports included in those they are trying to bundle.

2)      The other option is to still bundle some services but cut back to only 20 hours a week—that means 10 less hours of funding for any developmentally disabled individual in Florida!

I’m steaming mad, like I was back in January (see here and here), and I could tell you exactly how I feel about what these elected officials are trying to accomplish by essentially bankrupting the disabled.  However, I would rather allow you to see what one of the ARC Marion client’s thinks instead.  Here is the letter he dictated to ARC Marion staff members so that he, a constituent in the state of Florida, could let his legislators know just what they are trying to do.

To Whom It May Concern:

If you are holding in your hand and reading this letter from me, Matt Molfese, then you obviously hold a job and are a functioning adult and not reliant on the need of 100% assistance.

Did you wash up or shower before the start of your day today?  Well then consider yourself lucky…someone has to wash me and dress me, because I can’t!

Did you eat breakfast this morning, maybe holding your own cup of coffee or juice?  Did you feed yourself?  I can’t!

Did you do the simple task of brushing your teeth?  Well an individual must brush mine for me, because I can’t even hold my own toothbrush!

This is only the start of my day.  I am a 43-year-old gentleman with cerebral palsy.  I am non-ambulatory and wheel chair bound.  My limbs are severely contracted.  I am unable to feed myself, and I am incontinent.  Need I say more?  I am 100% disabled and 100% dependent for all daily living skills which others take for granted, like simply washing, dressing, using the restroom, eating and learning.  But despite all of these issues, I’m informing you that I am a human being just like you.

So in closing, my name is Matt Molfese… I have a heart that feels and beats just like yours.  I can hear you, and I listen.  I can see you, and I react.  I may not be able to function solely, but I do have a brain… one that feels, comprehends, understands and is smart.  So, under my obvious circumstances, how can you even consider taking away or lessening the needed and necessary care and funding away from me, or to provide me with 30 hours a week or five days a week of care?  May I ask what about the rest of the day and night?  If all I have is you, what will happen to me?  Please read this letter, look from my eyes, and feel from my heart and hear me!

I could not have said it better myself! Matt’s letter along with a bundle of others from ARC Marion clients will be heading up to Tallahassee within the next 24 hours.  It’s time to let the elected officials know they can’t make up budget deficits by hurting the disabled! 

**Want to know how you can help?  Contact the members of the Florida Senate Health & Human Services Appropriations Committee  or the Florida House Healthcare Appropriations Committee today! Visit http://floridaarf.org/ Grassroots page for more information and talking points.

From time to time our email inboxes can be inundated with the equivalent of spam sent from well-intentioned, forward-happy friends who are touched by a story they read online and choose to send to everyone else to be touched as well.  The thing is, so many times those forwards come from folks who have a lot more time on their hands than the average working mom of soon-to-be three who would rather spend time at home unwinding than on the computer where she’s been perched for the past eight hours.  I digress.

From time to time, those forwards actually do tug on the heartstrings and cause us all to ponder our position in life and possibly how we can make a difference in someone else’s life for the better.  There’s the one about a young elementary student who gave his teacher all he had one Christmas, only to receive her appreciation, support and praise throughout the rest of his life.  You may have seen the one about the Roane County (TN) high school principal praying over a football game in 2000.  Chances are you’ve received the one about the young doctor in his medical school graduation speech thanking a high school friend for saving him from suicide.   Though only one of these stories is true, all of these internet chains have one thing in common: they give the reader the sense that they can be and can do something more if only they take the opportunity to do so.

One more internet tale that has circulated in the recent past is worthy of note here for it’s a story of advocacy for a person with special needs, though the versions I have read are not about a Jewish boy named Shaya.  Rather I have seen it about a father telling a story about his son, Shay, who walked by a neighborhood park and wanted to play baseball with the boys on the field.  Apparently the team that was losing by six runs in the eighth inning allowed him to come into the game to bat in the ninth.   By the time he stepped up to the plate with runners in scoring position, they were only down by three.  The pitcher walked closer to him to try to give him something with which he could make contact.  When Shay first swings, he doesn’t come close, so a teammate joins him at the plate to help with the next pitch.  They hit a slow roller to the pitcher who throws it over the first baseman’s head, allowing Shay to go to first.  The infield proceeds to intentionally make error after error allowing Shay to continue around the bases for a grand slam, scoring all runners and winning the game.  He became a hero that day for the team, but his dad says the boys who gave him the opportunity were the real heroes.

Though the moving fictional story is adapted from a 1999 book entitled Echoes of the Maggid, it has still touched the hearts of many who have received it over the years through the powers of the web.  And it leads me to wonder, are there really kids out there like that who would help a guy with special needs achieve something he’d never done before?  I sure hope so!  Now I only question, where are they, and have you seen them?

We are working on some new literature at ARC Marion that will hopefully tell and show what we do.  The motto for some time has been Clients First! And we are keeping it.  Our Web site portrays it best with red exclamation points literally all over the site.  However, we have never allowed it to translate into any other tools we use to say who we are.  That is all changing in a few short weeks, we hope.

For this new project, I had the privilege of taking some new pictures of ARC Marion clients who were simply told to smile for the camera.  Their smiles and laughter were infectious, and while I don’t know which shots will make the final cut, I thought some of their smiling faces deserved a spotlight here.  They were told it was a “smile contest,” when how could anyone possibly choose which smile is the best?  Enjoy!

A blog post last week mentioned a basketball encounter my husband had at our local YMCA where he stood up for a fellow player who had special needs.  I received a lot of comments from people I know who had read the blog and heard the story, but one email in particular came from someone who had recently seen a video of a story I had seen many years ago.  Apparently, just last week, a pastor in Cleveland, Tennessee (my hometown) showed footage of a high school basketball game during his sermon he titled “Overcoming Limitations.”  The story goes like this.

Four years ago, the news sports director of 13WHAM TV in Rochester, NY, Mike Catalana, did a unique report that subsequently ran on CNN and now is literally shown around the world on YouTube.  The story, titled “Unlikely Hero,” features Jason McElwain, a highly functioning autistic boy who is a student assistant for his high school basketball team.  The feature continues that during his senior year at Greece Athena High School in Rochester his coach decided to let him play in a game, his first.  He had a lot of support from the team, and students attending even wore T-shirts with Jason’s picture on them. 

His first shot attempt was an air ball, but then something spectacular happened.  With his next possession, he scored a three point basket, and then he kept on scoring each time he got the ball.  In fact, the Catalana notes Jason scored a team record-tying six three pointers during the game.  After the game Jason said, “I was on fire.  I was hotter than a pistol.”

Why are these two blog posts about basketball games similar?  Because two young men who had been written off by some as disabled were given the chance to shine and simply be a part of a team.  I watched the story again, some four years since I had first seen it air, and I wound up with tears in my eyes again.  I knew what was going to happen as I have seen it several times over the years emailed to me from friends, but it doesn’t change the emotion I feel every time I see with my own eyes when someone is advocating for a person with special needs.  In fact, if only given the chance, anyone, even those with disabilities, can be found overcoming their limitations!

It’s a pretty interesting life to be raised with a sibling with intellectual and physical disabilities only to grow up and work in an environment where people with disabilities are my peers all across the campus where my office is.  I have the privilege to see and interact with these extraordinarily unique and special people every day, but not everyone has the same chance I do.  However, it’s always pleasant to know when simply my interaction, involvement and voice have caused people to “get it.” 

I have friends who now apologize if they stumble over using the word “retarded” in casual conversation.  People are cautious now around me in their offensive and derogatory terminology regarding those with special needs.  But the most recent example of someone who “got it” was when my husband was playing basketball at the local YMCA just last week.  Mind you, he was an only child with little exposure to those with special needs throughout his life, yet he can still identify when one of these special people is treated unfairly.

Apparently on this given day, a “mentally challenged” (his words) teenager was playing ball on my husband’s team during lunch, and another adult player in his 40s on the opposing team chose to dismiss this teen’s disability by stealing the ball from him frequently, especially on inbounds passes.  It took only a few times of it happening for my husband to stop the game and essentially call him out in front of both teams for what he was doing to this poor guy.  Several of his teammates were taken aback and couldn’t believe that he called the guy out, but I couldn’t have been prouder of him when he told me the story.

Sir Edmund Burke alluded some 240 years ago that evil will triumph when good men do nothing.  It only takes one positive voice of reason to make a difference and impact people’s lives at any given time.  And as that TV commercial for some financial institution shows people helping other people and other people watching those people… (gee the marketing isn’t that great if I can’t remember the company’s name),  I can only hope that the spark lit by my husband last week will only ignite the flame in someone else to help and stand up for those who don’t always have the loudest voices for themselves.

In the game of life and on the basketball court, it’s O.K. to let special people win sometimes.

I have been pleasantly surprised in the recent past with the use and representation of individuals with disabilities in children’s programming.  With two children under four, I see my fair share of kids’ shows.  I’ve discussed previously my adoration for the show Little Bill, but just as adults want variety in the shows they view, we’ve had to broaden our scope to a wider array of options with an occasional DVD thrown in from time to time. 

My two most recent examples of inclusion of the disabled I’ve seen include the Nick Jr. show, Yo Gabba Gabba! and a Sesame Street DVD of Elmo. 

At first glance, Yo Gabba Gabba! is a bit odd for the average viewer to take.  However, it doesn’t take long for a parent to notice the good, quality lessons being taught to children through catchy little songs.  Messages set to tune ranging from “Keep Trying…don’t give up” to “You’ve got to hold hands before you cross the street” to “Dangerous, so dangerous, you’ve got to watch for things that are dangerous” are often heard in our house or in public when we need to help teach a lesson.  But the thing that impressed me lately was when I saw one of the children cast in the show using a walker.  During each episode there are breaks where real children are used to dance and segue into various show segments.  This one little girl, Lauren, says she likes to dance and proudly does so while using the walker as a crutch.  Her disfigured legs are set in leg braces, but she participates in the activities the best way she can.

Then there’s the DVD Elmo’s Potty Time.  Sesame Street shows for decades have had the ability to capture the attention of young children through colors, pictures and songs.  This video is no different and features plenty of songs to get hung up in a parent’s head at any given time…trust me!  The thing that catches my attention most in this video is during the song “Trying and Trying Again” it shows many scenes of children and animals trying to do something that they eventually are able to do.  From a kitten climbing stairs to a little boy pouring a glass of milk, it helps teach children that they won’t get any new activity the first time they try it.  During the sequence, one little girl with Down’s syndrome is shown blowing bubbles.  She finally gets the hang of it and exudes a huge smile for her accomplishment.

With these two examples (Little Bill makes three, and I’m sure there are plenty of others), I see a trend in children’s programming that I like, especially for my children.  They don’t necessarily know that the people they are watching are that much different than they are, and showing those with disabilities in natural sequences just like everyone else is going to help teach my children, along with plenty of guidance from their parents, that people with disabilities are special, unique and wonderful people… just like my kids are.

For the past five months of this blog, I have repeatedly referred to the special people for which we advocate as “developmentally disabled.”  Well, today the tide is changing.  It is time for us to make the change that is before Congress for Rosa’s Law.  There will be many steps to the process, but if and I hope when it does become a reality, we want to be on board way ahead of the game. 

Beginning with this blog and going forward, these special people will be referred to as “intellectually disabled.”  All literature, the Web sites for both ARC Marion and the Hope Foundation, everything we say and do is going to be reflective of this change.  Will it happen overnight?   Of course not, because it takes a long time to change people’s minds, hearts and speech.  However, we are going to make the transition starting today.  We’re going to do it.  Won’t you, too?

We are so blessed that people in our community are starting to understand what we do to help the people we serve.  Furthermore, we are blessed that those same people are willing to put their money where their mouths are, literally.

In the coming week, we will collect close to 100 sold Hog for Hope bike tickets from one concerned board member of ARC Marion who makes it his personal mission every year to help us sell out of them.  Keep in mind, that is 100 out of the 600 tickets total that we sell annually, and they only went on sale February 1! 

On Thursday, February 18, ARC Marion will host the Marion County Building Industry Association, their members and friends and the community to the 4^th Annual King of the Wing competition with partial proceeds benefiting Scholarships for Hope.  This is the second year that MCBIA has partnered with us, and we are overjoyed to have them on our campus this year supporting what we do.

Then on Saturday, February 20, RideNow Powersports will hold their Ocala Grand Opening with raffles and drawings and donation collections again to benefit the Scholarship program.  Annually Lyle and his team at RideNow has supported our Hog for Hope events as well, and now he’s giving back in an even bigger way.

We are overjoyed that these different community organizations are being community minded and are choosing us to benefit from their events and their customers’ generosity.   They are truly helping us help others, a deviation from the Golden Rule that seems as good as gold to me.

The Rahm Emanuel incident has caused quite the conversation among journalists and media personalities throughout the country.  From nightly news broadcasts to radio talk shows it has definitely put the topic on the map. 

Recently the ladies of The View took it to task.  I learned something that I never knew until this incident, that Barbara Walters and I have something in common.  We both have sisters with the medical label of “mental retardation.”  Apparently Walters had talked about it in her book before, but it just wasn’t something I chose to read.  No one really talked about it at the time.  It wasn’t really topic of conversation.  But now that the word “retarded” has really caused some controversy, she becomes a resident expert, and rightly so. 

She feels, as do I, that the word “retarded” needs to be removed from everyday vernacular.  I think her View colleagues tend to agree with that position as well, though they don’t all seem to be as opinionated about it as she is.  However there is one thing that I disagree with in this segment …something that I have also been saying for a long time.  The “r” word really is a lot like the “n” word that was essentially removed from dinner table and water cooler vernacular some 30 or 40 years ago.  Sarah Palin made reference to it in her Facebook post.    Whoopie Goldberg disagrees.  Why?  Obviously it’s a sensitive topic for Whoopie… why? Because the “n” word directly affected her and her family.  Well the “r” word has directly affected Barbara Walters’ and Sarah Palin’s and my family, so I think it’s the same.  Furthermore, the people about whom the “r” word refers to negatively are the same people who don’t have loud enough voices to speak for themselves. 

I applaud the dialogue that is happening all across this country, and I can only hope that it doesn’t go away.  I also hope that lawmakers realize the mistakes made in this current Administration so much so that they will unanimously support Rosa’s Law.  Whether you agree or disagree with all of the talk about the “r” word, at least there is talk about which you can have an opinion.

 I don’t know if you want to call it ironic or a coincidence (which I don’t much believe it either) that just a few short weeks ago in this blog I was talking about our government leaders starting to understand our fight to advocate for individuals with special needs.  Just two days prior to that, I talked about the possibility of having Sarah Palin lead the charge to stand up for these special people.  Well, if you haven’t seen the firestorm and heated conversation stirring about Palin’s rebuke of Rahm Emanuel then you must have had your head under a rock. 

Apparently, the same day I was talking so glowingly about Palin, the Wall Street Journal broke a story  about White House Chief of Staff Rahm Emanuel calling a group of liberal activists “f***ing retarded” in a closed door meeting in August.  Since that day, January 26, Emanuel has been meeting with all sorts of disabilities groups from the Special Olympics to the Arc of the United States throwing around apologies like Mardi Gras beads. 

For some time I’ve been saying how important it is to remove the word “retarded” from every day vernacular, and right now it has really come to light to many people across this country that there might actually be something wrong with it… all because he, Rahm Emanuel, got caught.  Sarah Palin, in fact, even called for his firing.  Not so ironic to me that I said that same day that she might just be the one to lead this charge, and here she is. 

Literally everyone in mainstream media is talking about this, and what it really means.  The Special Olympics even started a Web site the r-word.org asking people to pledge that they won’t use it again.  It’s all just a start to a long fight ahead that we have for advocating for special people. 

Am I upset that Rahm Emanuel used this term in a derogatory fashion in casual conversation?  You know, not really.  You know why?  Because TV shows, radio hosts and movies have been using these references for years with very little conversation or change.  It might just have taken this one moment in time to cause the dialogue to begin, and that means we are one step closer to it becoming a reality.

Do I think that this, now the second “slip-up” of the Obama Administration’s disregard for those with special needs (the first was when Obama called his bowling game like something from the Special Olympics on the Tonight Show with Jay Leno in March 2009), has put a black eye on the White House?  Yes, I do, and I can only hope that when the bruising is gone, the healing and advocation will begin.  It’s time to be politically correct again.

I’ll be the first to admit that I’m an American Idol junkie.  Since midway through season 1 I’ve literally been hooked every January through June.  My husband has only been with me through the last five seasons and isn’t into music like I am, so he thinks I’m nuts.  I have, however, gotten his parents hooked on the show.  I am also pleased to say that I personally know one American Idol finalist from Season 6, Phil Stacey, and also know a current contestant and Hollywood hopeful, Jermaine Purifoy.

But the reason I bring it up here is because of the touching story of 16-year-old Maddy Curtis.  First of all, I can’t imagine being the ninth of 12 children.  What a “crazy” (her word) childhood she must have had with all of those older siblings.  Most important and unique is the American Idol story about her and her three brothers with Down’s syndrome.  The eighth Curtis child, her older brother, was born with the condition and since then her family has adopted three other boys with Down’s syndrome.  What an amazing story she has to tell…and with a good voice to boot.  Maddy talks about her brothers saying that they bring out the best in people.  She says, “they see the world in colors, and we need to see the world that way.”

I don’t have any idea how far Maddy will make it in the Idol process, but simply hearing her story and having millions see it across the country has truly touched the hearts of many.  I wish her the best of luck.  Her story has shown that people with intellectual and developmental disabilities are wonderfully special people (as she notes in her Idol video) and that siblings of those special people turn out to be pretty special, too.  One of the Idol judges referred to her as an “old soul” and truly “authentic.”  The truth is, siblings of people with disabilities are special people, too, with real, true stories with plenty of heart behind them….I should know.

This year marks the 9^th annual Hog for Hope™ fundraiser benefiting ARC Marion.  In 2002, the Heart of Florida Hope Foundation ventured into the fundraising world with several events surrounding one common theme.  Six hundred chance drawing tickets are sold for $100 each for a chance to win a custom painted one-of-a-kind Harley-Davidson motorcycle.  The 2010 tickets went on sale yesterday, and we anticipate selling out of them yet again as we do every year.

Through generous local sponsors and vendors the Hope Foundation purchases the bike to be given away and holds several events around it including a Poker Run (April 17), Chamber of Commerce Business after Hours (May 27) and a Hog for Hope™ Blues & BBQ (June 4) event which is also the night the bike winner is announced.   I’m proud to say that in the eight completed years of these events, over $450,000 has been raised to support the great causes at ARC Marion and the developmentally disabled clients they serve.

So the question still remains, why Harleys?  I liken my response to the one I heard in a movie recently about the life of Baltimore Ravens offensive tackle, Michael Oher.  In the book and movie about his life, The Blind Side, it tells a simple story of an impoverished African-American young man who is essentially adopted by an affluent, southern, Caucasian family, the Tuohys, with a strong-willed “Mama” who won’t give up on him or her family .  When he chose to play football at the University of Mississippi (the alma mater of his adopted parents and school tutor)  over five other prominent Southeastern Conference schools that recruited him out of high school, the NCAA investigated his decision extensively.  After some soul searching by the family and Michael regarding the process that lead him to choose Ole Miss, he confidently greeted the NCAA representative with a statement similar to this.  (not a direct quote) “You asked me about Mr. and Mrs. Tuohy going to school there.  You asked me about Miss Sue (his tutor) going to school there, but you never asked me why I wanted to go there.”  When the investigator pried further he replied, “I want to go to Ole Miss, because  my whole family has always gone there.”

Anyone who has ever spent much time around the ARC Marion campus can’t mistake the three Harley-Davidsons parked in the front parking lot every day as the CEO and two of his directors drive in over 30 miles each day to work.  Anyone who’s been around the boards for the Hope Foundation or ARC can see the half dozen or so other “bikers” among the crowd.  We are a family at ARC and Hope and the clients are a part of that family.  So why Harleys? Isn’t it obvious?  It just sort of rubbed off from the other “family members” nine years ago.

Now, the ARC clients are the first in line annually to buy their commemorative Hog for Hope™ t-shirts with their own money they earn through working in the Adult Day Training program.  They are the first to hop up and dance at the yearly BBQ event.  They are the first to want to be at the Poker Run to help out and just see what’s going on that day.  One client in particular wears a leather jacket and Hog for Hope t-shirts at least a few days a week.  It’s just ingrained in them…because it’s fun…because it’s for a good cause… and because a big part of their whole family likes Harleys, too.

No sooner had I considered that someone in a political office needed to be vocal for those with special needs that I read about Rosa’s Law (U.S. Senate Bill 2781) where Sen. Barbara Mikulski (D-MD) and Michael Enzi (R- WY) have co-sponsored the bipartisan bill to replace the words “mental retardation” with the words “intellectual disability” in all federal health, education and labor laws. 

“Retarded” is a medical term that has been transformed into a degrading and demeaning term as we’ve noted in this blog before.  Removing it from lingo in laws and hopefully, eventually textbooks and education curriculum is just the stepping stone needed to take action on removal of that term from the vocabularies of people across this country. 

To date, 26 senators have signed on to co-sponsor the bill.  If your senator is a co-sponsor, send them a note of thanks for co-sponsoring this important piece of legislation.  If you happen see that your senator is not listed, please take the time to contact your representative to request that he or she sign on in support.  Though ARC Marion is not a member of the organization, the Arc of the United States has made it an easy process if you simply enter your zip code on their site.  You can send an email or print a letter to send to your senators today.  I know I just did, and from experience, I chose to mail a letter to Sen. Nelson (his email system is a joke!)

Thank you for taking the time to help those who often don’t have a voice in the fight.  And thank you to Sen. Mikulski and Sen. Enzi for bridging the gap, crossing the aisle and advocating for those with special needs.  We applaud you for seeing the light!

… I had.  No matter which party you are affiliated with or where your politics lie, there’s no denying you know the name Sarah Palin.  But many people in the Lower 48 states had never heard of her until that hot summer August 29 day in 2008 when John McCain announced she would be the Vice Presidential candidate for the Republican ticket.  From that day on, she became practically a household name of radio talk shows, TV news broadcasts, tabloids and late night comedy fame. 

However, I remember reading about Sarah Palin before that August day when a brief article ran on May 4 that same year in our local newspaper in Ocala, Florida about her giving birth to her little baby boy, Trig, who has Down’s syndrome.  It featured a photo of Todd and Sarah Palin with Trig and was picked up by the Associated Press.  No doubt the story made newspapers all across the country, like this one for example.

According to the story, the mother of four healthy children had never had problems with her other pregnancies when she received the news that her fifth would have Down’s syndrome.  She was quoted as saying, “We’ve (she and her husband) both been very vocal about being pro-life.  We understand that every innocent life has wonderful potential.”

She goes on to say that she wasn’t going to shirk her responsibilities as the governor of the largest state in the U.S. “It’s a sign of the times that I’m able to do this” (be a mom of a special needs child and the governor), she said.  “I can think of so many male candidates who watched families grow while they were in office.”  Yet as I look back on the ridicule she received on the campaign trail in 2008 regarding this special little boy, I think she was a bit naïve just a few months before when she thought the country and even the world would get it.

Well I say, why not?  Why can’t a woman hold a job and still be a good mother to her special needs child?  Women across the country do it every day!  ARC Marion clients’ parents right here in Ocala do it every day.  There does appear to be a bit of a double standard when it comes to the role of the mother in the lives of special needs children, but all of that is for another discussion on another day.

I simply bring up Sarah Palin today, because I commend her for taking on the role of a mother and a professional.  In my lifetime, I can’t recall a political figure bringing up special needs individuals in a political speech like she did at the Republican National Convention in 2008.  Yes, Eunice Kennedy Shriver was the patriarch of the Special Olympics and fought for inclusion for all people with developmental disabilities.  But to my knowledge, her brothers who held political offices never really seemed to campaign on those issues.  Maybe if someone did, in every state, there wouldn’t be the funding cuts we’ve been seeing for decades for these special people.  It’s time for someone to step up, be heard and advocate on behalf of those with special needs.  It may be someone else, or it may just be Sarah Palin.

A Knocking Success

On a quarterly basis, the boards of directors for ARC Marion and the Heart of Florida Hope Foundation receive success story reports for clients at ARC.  Each time I read them, I’m amazed.  I’m not surprised by how wonderfully the staff adapts and adjusts to each individual client’s needs, because the people who choose to work day in and day out with developmentally disabled individuals for pennies on the dollar are truly unique and special people.  However, I am always amazed by how a few minor adjustments in care, concern and treatment can cause someone with a disability to adapt.

One such example was recently presented when a new client who only attended the Adult Day Training program a few days a month was having trouble getting used to the new surroundings.  He, like many people with developmental disabilities, has a problem with change.  When he would enter the building with his caregiver, he would always try to escape to get back outside.  He never spoke and would refuse to interact with his peers.

In a relatively short time, this client started to relax.  The ADT Director, Jennifer, created a system of knocking on the wall for him.  When he started feeling a bit insecure of his surroundings, he would knock on the wall.  Then Jennifer would knock back to let him know that she was there, and everything would be O.K.  Now that he’s been attending for several months, all of his insecurities are gone. He walks in and says “Good morning,” with a smile.  He shakes hands with his peers and staff and takes the initiative to communicate with staff when he needs something.  The ingenuity and creativity of one director has changed another person’s life for the better.  He is now comfortable interacting with his peers because someone took the time to adapt, adjust and make something so simple work for him. 

What some might think is a minor achievement is a huge success for this client who attends ARC Marion… all because of a knock on the wall.

…A question so appropriately asked recently by one of the ARC program directors.  With tears in her eyes she continued, “For all these years we’ve been telling our folks that they could make choices.  If they want to attend ADT (adult day training) today, they can.  If they want to go out on enclave (a work program in ADT that allows clients to work a job in a local community business) they can.  If they want to apply for jobs in the community or live on their own or just go out for a day of fun, they can.  Now, with all of these funding cuts, how can we still tell them they have choices?”

I don’t think I could have said it better myself.  The truth is, people with developmental disabilities who attend programs and receive services from ARC Marion are being cut so drastically that they soon aren’t going to have the choices they once had.  The time may come one day soon, particularly over the summer months when the budget year comes to a close (the cycle runs July 1-June 30) that the money from the state Medicaid waiver is simply going to run out for many of the folks ARC serves. 

The director said, “They trust us.  They know that we are here for them.  What are we going to do?”  While we wonder how these special people are going to handle the sudden changes, the fact remains, they are special.  They are resilient and can handle more than we give them credit.  They’ll take it in stride knowing that the people they trust will somehow work it out for them in the future.  Now, the question remains, how can we?

With state budget shortfalls causing service provider shortfalls, there doesn’t appear to be much hope in sight.  We can only hope and pray that things change, with the state legislature, and with funding decisions for the developmentally disabled.  Meanwhile, the great community of Marion County will continue to support those with the greatest needs.  We need it now more than ever, and it seems as if every time the need is the greatest, our great supporters always step up to the task.  Thank you in advance for caring for those who can’t always care for themselves.  We appreciate your support and your advocacy!

Allow me to step back on my soapbox for a few days. 

Want to know how the Medicaid waiver works for the developmentally disabled in Florida?  This year, it goes something like this.  If you aren’t already on the waiting list, apply.  Get your name on the list and sit there for the next seven years or so until you might get the opportunity to have services paid for by the state.

If you are one of the chosen who has been receiving services most of your life past the age of 22, you better have been using all of the monies you had been given by the state over the past year.  If you’ve been sick, in the hospital, or out of town on vacation and went a few days or weeks without services last year, then we’re sorry.  Those unused state dollars from last year will not be given to you this year.  Yes, that’s correct.  Last year, you saved the Florida Medicaid waiver system money, because agencies like ARC Marion couldn’t bill the waiver on days you were absent.  But apparently you don’t need to have 240-260 days of transportation, or adult day training, or companion or group home support.  At least last year you didn’t.  Never mind if you had surgery and are back in good health or went on a first-time family excursion for a few days in 2008.  The state of Florida doesn’t care if this money from the Medicaid waiver is all you have.  If you have no family and live with ARC Marion full-time, it doesn’t matter that the state support is what keeps you in a group home and gets you to and from your job every day.

That’s what rebasing is, and that’s what clients at ARC Marion are facing right now.  Do they know it?  No.  Most of these special people have no idea who foots the bill for them to be a part of the place they call home.  They just know this is where they belong, and people here love them. 

So, how is ARC Marion paying the bills?  In part due to the Heart of Florida Hope Foundation’s Scholarships for Hope program.  Luckily, the Foundation started funding some of the clients who are being rebased who live at ARC full time.  Without the nearly $20,000 in scholarship dollars paid by the Foundation in 2009 and the additional $35,000 needed over the next six months, ARC would be losing even more money than they already are.

Let me put it like this.  For the 50 clients who live with ARC Marion 24/7, if one of them suddenly only receives four days a week of transportation and adult day training services, then ARC would have to pay staff members to stay at home with that client.  Currently the residential group homes are only staffed during the evening and morning hours.  While the clients are at work or utilizing other services, those group homes are empty.  If the client has to stay home, then that’s additional staff hours and more money coming out of the budget for ARC to care for that client at home.  It’s better to either find a way to fund the one or two or more clients to attend the programs than it is to have one or more staff persons placed in the eight group homes around the community 24/7. 

Rebasing within the Medicaid waiver system not only hurts those with special needs, but it significantly affects those organizations who give them services.  It’s simply not fair to take money from those who have no other means of getting it for themselves.  Then again, maybe those extra dollars the state of Florida is saving this year in the Medicaid waiver might help them pay for high speed rail? Think about it.

When I have the opportunity to write about a cause in which I am extremely passionate, I’m sure it’s easy to see my heart in print even if you can’t see it on my sleeve.  From time to time I get a little hot under the collar fighting for people with developmental disabilities who don’t have the ability or understanding to fight for themselves.  Call me human.  Call me a sibling of one of these special people.  Call me and advocate.

So, today, I take a moment to step down from my soapbox to simply tell you about the wonderful things planned over the course of 2010 at ARC Marion and with the Heart of Florida Hope Foundation. 

On February 18, the Marion County Building Industry Association will be hosting the Fourth Annual King of Wing competition on ARC’s campus located at 2800 SE Maricamp Rd in Ocala, Florida.  Over a dozen local establishments will be battling it out with their famous recipes for wings in hopes of being crowned the 2010 King of Wing.  A portion of the proceeds come back to the Hope Foundation benefiting ARC, so we’re proud to promote it.

In April, May and June we’ll be holding the 9^th Annual Hog for HopeTM events.  If you live in the area and have not participated in these fabulous, fun activities, you don’t know what you’re missing.  Calling all motorcycle riders for the April 17 Poker Run starting and ending at Harley Davidson of Ocala.  Then on May 27, we welcome all Chamber of Commerce businesses under the big tent for food, fun and prizes.  A new event for Hog for HopeTM will be the May 31, Memorial Day, Kids of Rock event where area teen rock bands will battle to see which group will be crowned the Hog for HopeTM Kids of Rock.  Then Hog for Hope wraps up on June 4 with Hog for HopeTM Blues & BBQ.  The annual event features the drawing for a one-off custom painted Harley Davidson motorcycle.

In August, the 7^th Annual Allstate Mortgage/Brady Ackerman Golf Scramble will be held at the newly remodeled Ocala Golf Club with all of the proceeds going to benefit the Scholarships for Hope program.  And finally, we wrap up the year with the 12^th Annual Elegant Evening of Thanks at Golden Ocala on November 19. 

We’ll have plenty going on throughout the year in addition to these great events, many of which have been around for several years.  While they are gaining steam and popularity, it’s time to mark your calendars now so that you won’t miss them in 2010. 

Thanks for your support and for helping us advocate for special people!

The fact remains, there are certain people groups who frankly need assistance from the government.  As much as I hate to admit it sometimes from the political standpoint, without government assistance and intervention for certain folks, like those with developmental disabilities, they just wouldn’t receive the care and training they need.

However, just as we as a nation are seeing government systems like Medicare and Social Security not working as well as they once did, it’s happening at the state level, too.  When those government programs were established, people weren’t living as long.  They weren’t retiring as early.  The thought was that each program would have plenty of money in it, because the workforce contributing to them would always be larger than those receiving the government funds. 

The Medicaid waiver system in the state of Florida is guilty of this same mindset.  When it was established to pay for services for the developmentally disabled ranging from transportation to housing to job coaching and everything in between, people with special needs weren’t living as long either.   A few decades ago, it was common to see people come off of the waiting list for services regularly as one of their counterparts passed away.

As medicine has advanced, nutrition and exercise increased and life-saving treatments have become more prevalent legislators at both the local and state levels haven’t had the foresight to understand that the monies, funded in the current way, were simply going to eventually run out. 

Just like the federal government is searching for solutions to the government programs already established, I strongly encourage the state of Florida legislators to do the same.  The monies in the Medicaid waiver system, if they really were distributed the way they should be, to all people with developmental disabilities, would be bankrupt.  It’s time to go back to the drawing board and come up with solutions to help instead of cut.  These special people need government intervention, whether I like it or not.

I’m officially hot and bothered!  The Florida legislature has gone to great heights to get me to this level, and I just really can’t believe what I’m reading in the press day in and day out about their most recent special session. 

I’ve mentioned in this blog before the fact that the state of Florida ranks dead last in funding for developmentally disabled individuals.  Yes, that’s 50 out of the 50 states.  It’s not a statistic in which any of us who live here are proud.  It’s something we just deal with on a daily basis.  There’s no money in the state coffers, allegedly.  Annually the state budget can’t get balanced without making cuts across the board, or so we hear.  Tourism is down.  The construction industry is in the tanks.  People aren’t moving to Florida in the droves like they were a few years ago.  However, taxes are relatively low, and there is currently no state income tax.  We get it. There’s no money.  We just deal with it.

Then, as if out of thin air, both houses of the Florida congress approve a bill to bring high speed rail to Central Florida.  Not our part of Central Florida, but to the “area” nonetheless.  The piece of legislation, signed into law by Governor Charlie Crist on December 16, comes with the $1 billion-plus price tag made up of Florida taxpayer dollars.  Remember, we don’t have money to pay for the services we already have on the books, so I’m not quite sure from where all of this magic money is coming. 

Some of the guarantees of this great new bill are jobs.  Well we all want more jobs, but this railway system is in between Orlando and Tampa.  How does that help us here in Ocala? What about the folks in Northern Florida, in the panhandle who aren’t getting any piece of this railway pie?  On top of all the frustration, the job-creation numbers for this great project are only in the tens of thousands range, and the numbers of potential commuters on this fabulous new rail system are also in the thousands.  Yes, the price tag for the trains is in the billions with a “b,” and we’re only guaranteed that a few thousand folks will be positively affected by it.

All the while, there are 20,000 people with developmental disabilities sitting on a waiting list in Tallahassee hoping and praying that they will be accepted to receive state Medicaid waiver funding.  Hoping that they could attend programs like those we have at ARC Marion to help give them job skills and training, to offer them hope and a future beyond just sitting at home. 

Do you see why I’m a little hot under the collar?

In recent weeks I’ve shared stories of my school days, stories about my family, and stories from my hometown.  As I ponder the topic for this end of year message during this holiday season, my thoughts keep returning to how things are there, and how they are quite different here where I live now, in Florida.  There’s just something different about how people with developmental disabilities are regarded in the town I called home for over 20 years.  It’s hard to describe and explain.  Maybe I see it more being the sibling of one of those people.  Maybe my heart is touched in a different way simply because it’s a part of my life.  However, there is something unique about Cleveland, Tennessee.

I would like to think it has something to do with being called the “buckle” of the Bible belt, serving as the International headquarters for several church denominations and with over 200 churches for the 80,000 residents in the county.  Someone in Florida once told me that she thought if the church did its job caring for the “least of these,” then people with special needs shouldn’t need the state or federal governments at all.    While I don’t agree with the concept in principle, the heart of the message does make sense. 

I would like to think one of the differences between Tennessee and Florida is the higher education and training in special education.  Over a decade ago, a group from Florida traveled to the University of Tennessee in Knoxville to learn about their program formerly known as UT-TIE (University of Tennessee Technology, Inclusion and Employment).  Back then they were on the cutting edge of studies in areas such as employment for the developmentally disabled and inclusion for special needs individuals.  To think that 30+ years ago they started implementing some of those plans and programs in the Tennessee schools, and Florida hasn’t even started.  Even in my hometown, the local liberal arts university has and excellent School of Education and special education program where they are training tomorrow’s teachers today.

But I think one of the main reasons my little hometown is so unique and different is because some 40-50 years ago some very prominent, wealthy people in town were affected by developmental disabilities when they had children born with the conditions.  Those people became a vocal minority, putting money where their mouths were and helping to create a culture of acceptance and inclusion.  From wonderful structured programs in the school systems to a great Special Olympics, from cutting edge medical support in their local services center for those with developmental disabilities to loving and caring for those who are just a bit different, there’s something unique about my hometown.

Does it make me want to move back there? Sometimes, because some of the concepts I’ve known my whole life are foreign to those living around me now.  However, it really makes me want to stay right where I am to start changing a mindset, a culture to truly advocate for special people. It takes just one pebble to ripple through an entire pond, so for now I’m going to stay right where I am but not stay silent.  There’s no place like home, but it’s time to start trying to make my new home like the place I know it can be….

When someone passes away, there is a void left where he or she once was.  When that person has special needs, there is a little different feeling.  People with developmental disabilities need added, extra care and support throughout their lives.  Picture raising a five-year-old child who stays five for 60 years or more, and that’s sort of what it’s like for some.  When the person is embraced by the entire community throughout his or her life, then you have a real unique situation, one that resonated in November throughout my hometown of Cleveland, Tennessee.

Longtime resident and “Coach” Robert Maupin passed away in the gymnasium of a local high school where he had worked for over 30 years.  He was a unique individual.  One who touched many people’s lives on a daily basis.  He had keys to everything in the local high school, used an old janitor’s closet for an office, and arrived to work every day around 6 a.m. to open up the school.  “Coach” Maupin worked hard, especially for the athletic departments in the school where he would be at the football field or gym for ballgames and stay until everything was over to close up, usually around 10 or 11 p.m.

I attended another high school in town, so I didn’t have the honor of knowing this wonderful man.  For the days following his death, multiple stories ran in the local newspaper as writers opined about how he had touched their lives personally.  A photo ran in the paper of the hearse taking his casket to the football field of the high school as hundreds of members of the student body looked on in silence.  My father sent me all of the information, because he thought I would want to know about it, about this man he had known for many years as well.

The thoughts that ran through my mind when I first heard about his passing were not those of sadness for the void that will never again be filled in that community.  Actually, I was taken aback by the love and respect those residents showed for this unique man with special needs.  They trusted him.  They relied on him, and he never let them down.  He had a servant’s heart, volunteering in his local church’s bus ministry, summer camps, and Sunday School classes. He was also a good community citizen volunteering with the Lion’s Club and helping out at a local Credit Union and also a funeral home. People believed in him and in what he could do, and he was always there.

For “Coach” Maupin it was never about his disabilities.  It was all about his abilities to work, to love, and to care.  And no one seemed to take advantage of him along the way.  He found joy in helping others, so when people allowed him to help them, they were helping him fulfill his purpose in life.  In his passing, I hope the citizens in my small hometown realize the kind of impact they made on one man’s life by allowing him to impact them.  If we all took that kind of attitude toward those who are different than us, wouldn’t the world be a better place?

(Many of the details of Coach Maupin’s life were recounted from articles in the Cleveland Daily Banner November 11, 12, 15, 18).

For the past five years, during the Thanksgiving and Christmas holidays, my husband, children and I have taken to the air or the roads to visit family.  We rotate between Tennessee and Pennsylvania for the specific holiday, and each year we go to each location.  This year was our year to be in Tennessee for Thanksgiving, so I was able to spend it in my parents’ house with my mother’s family of aunts, uncles and cousins, and of course my sister.

Allow me to describe the scene annually with my sister in the mix.  You just never know what you’re going to get.  Because she lives in a group home and doesn’t live with my parents, some years she’s chosen to spend most of the day upstairs, away from the action, and in the company of my mother alone.  Some years she’s wanted to leave early to go back “home.”  Some years she’s gone upstairs to the full-size bed in her room and taken a long nap (she has a twin in her group home).  Some years she’s sat perched on my aunt’s knee or on the piano bench listening to music being sung or conversations around just taking it all in, so you just never really know how the holiday day will be.

This year, she was just great!  She doesn’t sit at the “kids” table with the cousins in another room.  She has her spot on a small bench in the corner of the dining room table with all of the adults.  She knows that’s her spot, and often walks straight to it when she gets hungry before everyone arrives.  Following dinner this year, she did go upstairs for a few minutes with my parents, possibly to collect herself and just get comfortable in her surroundings.  But she came down shortly after and just went from room to room sitting and watching and listening.  When the dining room table was cleared, all of the cousins started working a 900 piece puzzle on the table.  Instead of causing a commotion or getting in the way, she sat in a chair, close to me just enjoying everyone’s company.  She wasn’t disruptive and didn’t bother any of the work going on (as she has been known to do over the years).  She was just a joy to have around. 

Whether her calm demeanor and mild behavior was reflective of her maturing in age or simply just having a good day, I’m truly grateful that my holiday spent with my sister this year was a very special one.  As my husband’s family and I celebrate Christmas in Pennsylvania tomorrow, I’ll be missing my family in Tennessee but know that I have wonderful memories of our very special Thanksgiving Day holiday.

Being the sibling of a developmentally disabled person means I’ve grown up around special people my whole life.  I’ll admit, ashamedly so, that I have not always been extremely comfortable around those folks who were just a little bit different than me.  I have grown and matured over the years, and working around these wonderful people every day makes me not only appreciate the great and unique job I have, but it also makes me care for and advocate for these people more every day.

I have been and am around these special people all the time, but many colleagues, friends and even my husband don’t have those same chances.  That’s why I really enjoy the opportunities we make when our clients attend our fundraising dinner, An Elegant Evening of Thanks, annually.  Because the seating chart is set with assigned placement, we seat clients at tables throughout the room with various other unassuming individuals.  Throughout the hour or so dinner, relationships are made among people who might not have ever become acquainted before.

Two such examples occurred this past year.  One of our clients, Dorothy, was placed at a table with some colleagues of mine in the community.  I recently saw both of the ladies at another function, and they both went on and on about how much they enjoyed her company.  One of them even brought to me a little gift for her.  Dorothy had made such an impact on these two community leaders that they will never forget that event or our organization.

The other instance of note was actually the joy my husband had in sitting with a client he had never met before.  We actually had two ARC Marion clients at our table, but one of them was much more vocal than the other.  My husband and Richard spent the night gabbing about football and church music and traveling.  I was so busy running around throughout the fundraising event that I didn’t have much time to chat with my husband myself, but he really enjoyed this event more than any of the others due to a relationship he’s made with Richard.

At the end of the day, I truly love what I do, working with and for great, very special people.

I still remember the day when my sister moved out.  Well, I guess I remember more the night before, because I never really knew what kind of impact it would have on me, nor did the 10 or so friends of mine who were with me, spending the night at a fellow cheerleader’s house, the night before our first day of high school.  On that August evening, I locked myself in a bathroom downstairs, sobbing uncontrollably for an hour.  Why? I guess there simply weren’t words to describe all of the emotion I felt about her moving into a group home for the developmentally disabled.  She was going to receive much-needed residential support 24 hours a day, but she wasn’t going to be living in my home any longer.

It is an emotional decision for any family when they have to make such a choice.  What is best for the special person in question? What is best for the family unit? What is best for everyone involved?  These questions have tough emotional answers, and that’s what I felt in that small cramped space in the home of my friend.  We knew it would be best for my sister.  She had simply gotten too tough to handle at home, and finding in-home care for her when she wasn’t in school was extremely difficult and expensive.  With her autistic tendencies, she thrives on routine, something that just can’t always be in a family unit.  Did I feel at that moment that it was a somewhat selfish decision for her to not be in our home?  Probably.  After all, I was heavily involved in extracurricular activities and knowing my parents might actually be able to attend some of them was a welcome blessing.  But it didn’t make the decision or the adjustment process any easier knowing that she would be better off in a different setting than our home.

It’s possible that the emotion I felt on that day and many days following also has something to do with the joy I have when I think of how grateful I am that we went to school together.  Even though she wasn’t in my home, I was able to see her, in an educational setting, from time to time during my last two years of high school.  Those moments are memories I will cherish for a lifetime.

When families are making the choice to move their developmentally disabled loved ones into residential settings outside of their homes, they really are tough decisions.  All options need to be weighed and considered, and I can personally guarantee, there will be a lot of emotion all the way around.  But as long as you are a strong family, you can weather any storm together even if you aren’t all under the same roof.

The other day, I had the wonderful opportunity to tour one of our community’s sometimes hidden gems.  But what I left with were more questions in my own mind than answers.  The local county public school system has a wonderful school devoted solely to those with developmental disabilities.  Students range in age from the sixth grade level to 18-22 years of age.  They are taught life skills, job skills, have various therapies including therapeutic horseback riding and swimming, and those who attend the school love it!  I even passed a parent in the hallway whom I know who said the school was great and was a special place.  Special indeed.

It took me back to my own sister’s education in Tennessee where she began attending a local elementary school when she was five years old and eventually, as many individuals with special needs do, she had the principal and many other staff members there wrapped around her little finger.  There’s just something about these special folks diagnosed with developmental disabilities that you can’t explain.  Something that draws you to them with love, care and concern that is unmatched.  Nevertheless, my sister eventually got older and wound up attending high school with me.  She had her own classroom with others like her and her own schedule, but many students in the school served as “peer tutors” in her classes.  She ate lunch in the cafeteria, attended pep rallies for our football games, and walked the halls like any other student. 

So what is different about these two education pathways?  While I understand that many of the schools in our local community at the elementary, middle and high school levels have classrooms for varying special education needs, this one special school is devoted to those who require the most care and assistance.  If my family had lived here, my sister would have attended that school and not been in high school with me, where she saw me cheer and heard me sing the alma mater at pep rallies.  My high school friends would not have been special education peer tutors to her as an elective in their high school curriculum.  I would not have had the opportunity to pass and greet her in the hallway, where she was always donned in her pink helmet as to prevent injury to herself during any type of behavioral outburst.  Knowing all of this has simply left me asking questions in my own mind.

At ARC Marion, people with developmental disabilities receive job skills training in the hopes that one day, at least some of them will be able to go on enclaves and work in businesses around our community.  Our goal is one of inclusion.  During our recent fundraiser, An Elegant Evening of Thanks, 15 ARC clients attended the event.  They weren’t all together but sat at tables spread throughout the room.  Every “normal” person who sat with one of our clients has told us how wonderful it was to meet and interact with those special individuals.  Why? Because they were included. 

I suppose my concern doesn’t lie with the people with special needs.  They are receiving wonderful care, training and life skills coaching at their specialized public school.  But it’s the folks like me, classified as “normal” about which I worry.  I only hope that we aren’t raising a generation of adults who don’t know how to include those with developmental disabilities into their everyday lives.  In turn, I do hope that in the wonderful educationally enriching environment being provided for special needs students that we aren’t keeping them from knowing how to be included. 

I am grateful for the education I received and the opportunities given to me that allowed my sister and me to attend the same public high school for a few years.  And after seeing that the inclusion we had there isn’t present everywhere, I won’t ever take it for granted.

I recently watched a story on ABC’s Good Morning America about a group called Flame.  The touring band of 10 members is quite unique in that each of them has some form of development disability ranging from cerebral palsy to autism to blindness to mental retardation and other disorders.  They all attend the Lexington Center located in the foothills of the Adirondack Mountains with programs very similar to those at ARC Marion, and none of the band members has allowed his or her disability to limit their abilities.  Flame tours throughout the country though the majority of their 2009 tour dates were throughout their home state of New York.  They have been on a world tour, and their lead singer even sang at Eunice Kennedy Schriver’s funeral.  The reporter states toward the end of the piece, that they want to show what the “mentally challenged are capable of if given a chance.”  I can think of no greater advocacy for these special people than a group of special people!  They are truly living their lives in perfect harmony, and helping to complete the harmony of the world.  Thank you, Flame!  Keep on burning!

If you haven’t seen it, you should check it out.  Here it is: Music Saves Lives

I don’t think I’ve ever seen more joy on the faces of the clients at ARC Marion than I do when they are told what kind of good things they are doing in the community.  In October, when they collected new pajamas and books for homeless children in Marion County, they were overjoyed to help.  One client made sure that her name was placed on the pajamas she donated so that the child would know they were from “Tina.”

In November, the clients, families and friends of ARC participated in a food drive for Interfaith for the second straight year.  The goal for this year’s food drive was to restock the shelves of Interfaith food pantry after the Thanksgiving holiday wiped them clean.  Several boxes of food were collected from ARC clients and people in the community as well as a few cash donations. 

Gingerbread house

Also in November, ARC Marion clients who attend Adult Day Training programs helped create a gingerbread house that was a replica of the Waliga Administration building on ARC’s campus for a fundraiser to benefit the Arnette House.  Under the direction of their art teacher, Lois, in arts and crafts classes, clients took two weeks to put all of the edible pieces on the gingerbread house.  The clients were so excited to participate in this event to help young people in our community.

This month is no different.  Throughout the month of December, ARC Marion is serving as an official drop off location for the Toy Drive of the Marion County Children’s Alliance who will disperse the new, unwrapped toys to various other charities in the community.  Those donated toys may be the only Christmas some little child in our community receives, and our clients at ARC are happy to help and support their community, once again.

There really aren’t words to describe how grateful we are for the outpouring of love and support our Ocala community gave during this year’s Elegant Evening of Thanks.  When Hope Foundation board member, Kelley Jenkins became the chair of the committee (read previous blog post), I knew it was going to be a special year, but I never expected anything quite like this.  From the 10 corporate table sponsors to the 235+ in attendance (nearly 100 over our previous highest total), from the fabulous donated silent auction items to the eight generous florists who donated beautiful centerpieces for live auction, I don’t think the night could have been any more perfect.

Yes, our event did run the same night at John Travolta and Kelly Preston’s fundraiser for five charities in town (see previous blog post), but it didn’t put a damper on the enthusiasm of our event one bit.  When all the bills had been paid, checks had been cashed and credit cards were processed, the Hope Foundation netted over $70,000 for the Scholarships for Hope fund benefiting disadvantaged developmentally disabled clients in Marion County.  Included in those totals were also 10 individual commitments for specific scholarships for clients ranging from one day to one year scholarships. 

I would like to take this opportunity to say a huge THANK YOU to Kelley Jenkins and her fabulous committee: Terri Vette, Emma Luetgert, Melodee Schneider, Rita Miller and Bree Maxwell Anderson for their tireless and relentless efforts to speak on behalf of those who can’t speak for themselves.  Countless individuals with developmental disabilities will benefit in 2010 from your unwavering spirit of advocacy.  There simply aren’t enough words to show our gratitude…

During the Elegant Evening of Thanks event held on Friday, November 20, I had the privilege to stand before the crowd over nearly 240 people and share about the clients at ARC Marion.  My words. My heart. I thought I would recount my words here in print for anyone else who might be interested…

“The clients at ARC have been pretty busy this year showing how they are good community citizens.   Starting with last year’s Interfaith food drive to the one we are currently in and everything in between.  They’ve collected pajamas and books for homeless children, put artwork in the FAFO art show and even built a gingerbread house for the Arnette House fundraiser this weekend.  The clients at ARC are pretty special people.  It’s hard to believe that some people might just overlook them or pass them by.  Not the people in this room.  You are the ones we want to thank.  You get it.  You care about these special people with developmental disabilities just like we do.  But it’s the other people who just don’t get it sometimes.

In the ARC blog posts coming up (those that posted the week of November 22-29), and yes the blog is something else we’ve started this year, the posts will be about harmony and purpose. I like to think of these special people like in music that F# that makes a G major 7 chord or in baking the one teaspoon of baking soda in the chocolate chip cookie dough.  Standing alone, that black piano key, the F#, or pinch of white powdery baking soda may not seem significant, but when put in their proper place, in the mix, in the structure, in the harmony of society, they are exactly where they need to be and are needed.  When they aren’t there, things just feel different.  People with developmental disabilities like mental retardation, autism, and cerebral palsy are part of the fabric of who we are as a people, and it’s moments like this evening that I have joy and am grateful, because you get it, too.

Kelley (Jenkins- the Elegant Evening of Thanks commmittee chair) and her committee have put together such a wonderful evening tonight, and they did it with one voice unified with one purpose.  You may have heard her say it.  They were asking for help and support for those who can’t go out and ask for it themselves.  That’s what we do.  What you do when you help these special people.  You help give them a chance to be an added ingredient where they are so greatly needed.  Through the Scholarships for Hope program, we’re doing that every day and only hope for it to grow more and more.  We give individuals the opportunity to work, to have transportation, to have support services that they so greatly need, because they are needed.

So I say thank you to all of you who have supported us this past year, through giving your time, your talents and your treasures.  I say thank you to all of you in attendance.  You may have thought you were just buying a ticket to a fun party, but in actuality, you were helping a special person become that special note to make the harmony in the chord.   As we go forward into 2010 whether you contribute monetarily or not over the next year, we hope that you will leave as an advocate for the special people we call friends.”

My earlier blog post this week recalled when Bill Gaither recently shared the precious story of how a rich and famous celebrity took a person under his wing who was a little different than he. But while that sweet story was the meat of the talk that day, the real key is why Gaither talked about it at all.   

On that September day in Cleveland Tenn., Gaither told the crowded room of musicians and music lovers about harmony.  He explained, “The harmony parts sometimes are so subtle and so small that unless you get quiet you’ll never understand it, and they’ll go by.  And there are small parts… I like the melody, and I like the lyric.  But there is a “completer,” and the word is harmony. And sometimes it’s not taken very seriously.”  Then he told the story of William Lee Golden and Richard Brown.  (see story) He told that Richard “was a little unknown person who made the harmony part of our lives work.”

It lead me to think about my own life and the things for which I’m grateful.  On this Thanksgiving Day, I am grateful for life’s harmonies.  I’m thankful for the pauses and the interruptions, loud noises and the whispers.  I’m in awe of the awesomeness that truly makes our world go around.  I don’t want to take for granted the blessings I’ve been given, and I am blessed to be the sister of someone who is medically diagnosed as being different than me.  But has Gaither concluded, “The point is we need all the parts…It takes all the parts, but when they all come together in harmony, it works.”  I couldn’t have said it better myself.  

Be blessed and grateful this Thanksgiving Day!

I had the privilege a few weeks ago to hear a touching story as told by Bill Gaither, acclaimed southern gospel writer, performer and founder of the Gaither Homecoming concerts that is sweeping the nation.  I have since received permission from the William Lee Golden of the Oak Ridge Boys about whom the story was told, so I recall it here.

Richard Brown was an 85-year-old autistic man from Connecticut who was well educated and musically trained.  His grandmother was a graduate of Julliard and taught him to play the organ and the piano.  Bill Gaither recalled Richard was “autistic, physically, mentally very challenged, but very brilliant in a way.  You would look at him, most people would overlook him.  He would pick up the trash (at Michael Sykes’ Nashville studio).  William Lee Golden met Richard 1965 and took him under his wing and made sure Richard was taken care of since meeting him.  William Lee said that it was he who gained from this friendship with Richard and that he thought that “God sent Richard into his life to teach and bless him (William Lee), not the other way around.”  Richard Brown loved Gospel music and especially the Lord. 

Richard recently passed away after a bout with Leukemia, and this year at William Lee’s Thanksgiving table there will be a void, for that was the spot where Richard sat for many years.  William Lee asked recently that instead of flowers for his passing, “We are sure that Richard would appreciate it if, down the road, you would stop and get to know and extend a helping hand to those that most people seem to pass by.”

Those people are the kind-hearted, genuinely special people we help everyday at ARC Marion.  I am truly blessed to call so many of them my friends and fortunate to call one special developmentally disabled person my sister.  As I sit around our Thanksgiving table at my Mom’s in Tennessee this year with my sister who I don’t get to see enough, I’ll be thinking about the empty seat at William Lee Golden’s table and hoping that developmentally disabled individuals across this country aren’t passed by this holiday season.

(In the spirit of my Six Degrees of Separation from the developmentally disabled, Bill Gaither shared this story at an event in Cleveland, Tenn. honoring a longtime family friend of mine, Danny Murray.  Since Danny knows Bill Gaither, and Bill knows William Lee, I guess I only needed five degrees to say I was blessed to “know” Richard Brown as well.)

OK I’m going to say it.  John Travolta and Kelly Preston are just like me.  They call Marion County, Florida home, and so do I.  O.K. we aren’t neighbors (have you seen the layout of their house in Jumbolair?), and I haven’t seen them in Starbucks or Cold Stone Creamery or Target like I’ve heard from so many others around town.  So maybe that’s where our story ends.  Actually there has recently been a bit more to the dialogue than just the physical address.

When John Travolta said for the first time in September 2009 that his family member (his son) was autistic, we have a connection!  When I learned that the newly formed Jett Travolta Foundation strives to assist children with hearing, vision, mobility, communication and learning impairments, we have a connection!  When he sets up fundraisers in Ocala to benefit multiple charitable causes about which I am interested as well, we have a connection! Granted tomorrow evening they are hosting an event Ocala that is the same night and time as our Elegant Evening of Thanks.  Then again the fact that we are talking about competing with John Travolta means we have a connection!

How far that connection goes from here only remains to be seen.  I hope we can make even more connections to Ocala’s Hometown Celebrity in the future.  The point is, as I mentioned in a previous blog post, we are all connected to someone who is developmentally disabled.  How you choose to further build upon your own connections is up to you.

Recently, I had the opportunity to travel to Boca Raton with my friend, Toni James.  During our trip, my six degrees of separation from the developmentally disabled concept was further solidified when she mentioned to me a story about her cousin.  This delightful woman named Katherine lives in Connecticut and is developmentally disabled.  Eight or nine years ago, she became romantically affiliated with another developmentally disabled gentleman who attended her day training program.   What do two people do when they fall in love?  They get married, and these two people were no different.  Did they have some adjustments to make to living their lives as a married couple? Sure they did, but don’t we all?  Have there been some stumbling blocks along the way for them? Of course,  and they actually live in a condo owned by her father and have a case worker who checks in on them from time to time.  However any pitfall that may come their way, they are weathering the storm as two happy, special people in love.

It was actually the first time I had heard a personal story about two folks with DD getting married.  To my knowledge I haven’t ever known anyone else with DD to get married, though we have a few couples at ARC Marion who’ve been together a long time. (wink)  It just made me think, why not?  There was nothing stopping two consenting adults from binding together in holy matrimony to live happily ever after, and I think it’s just great.  Furthermore, since this couple is family to my friend, I now have a connection to two more happy people!

The phenomenon of “six degrees of separation” is real and focuses on the idea that every person on earth may actually be connected by as many or as few as six relationships.  Basically, all of your friends and family members have additional connections you may not know.  Then those connections have more connections and the “human web” continues considering that any one person may only be six relationships away from everyone else.

A similar concept known as the Six Degrees of Kevin Bacon attempts to link the actor to every other actor in Hollywood using the same type of scenarios.  It has actually lead Bacon to create Web site, SixDegrees.org, that links actors to their favorite charities and inspires people to donate to causes online.  Does the fact that Kevin Bacon has a charitable spirit and desire to give to many worthy causes actually link us in some way? I digress…

I think the Six Degrees concept works for the developmentally disabled as well, though some people may not always think of it as such.  Yes, I have a sister who has cerebral palsy, but I have other friends and board members who also have connections to someone who is developmentally disabled.  Whether it’s a sister-in-law, daughter, cousin or even just a friend down the street, if you think about it, we are all connected to these special people, and that’s why we want to help them.  I’ve said before that my job as the Executive Director of the Heart of Florida Hope Foundation benefiting ARC Marion is to raise money for the clients at ARC Marion, but I use it as an opportunity, a platform of sorts, to share the stories of these wonderful clients.  The way I see it, when I tell their stories, who wouldn’t want to give to them?  Then everyone who gives becomes a part of the connection, that human connection that makes up a web that cannot be broken.

For months this blog has been devoted to the special people in this world who are developmentally disabled.  Though they may not look the same, talk the same or act the same as you, they are real, genuine individuals who care about their work, their play and their communities.

There’s another group of people who deserve a lot of attention, too.  Even if they seem to be the ones in the background most often, without them organizations like ARC Marion could not survive.  They are the folks who often go unnoticed, who make the least amount of money and who work the long, hard hours…the staff.

Just like a shepherd uses his crooked staff to lean on, support him and help him along his way, an organization is only as good as its employment staff.  At ARC Marion, the folks working with our developmentally disabled clients are just like the shepherd’s staff.  At times our clients need them for support and help, but all the while they are there taking them hand and hand and leaning on them when they need that little extra assistance.

It’s never been about the money.  It can’t be.  After all half of ARC’s staff makes less than $8.50 an hour to do what they do every day.  It’s really about their hearts.  They love the people at ARC, and they love helping people in general.  Recently a staff member received a letter of commendation from another non-profit Executive Director in our community.  The letter proclaimed how wonderful it was to work with such a caring, dedicated individual who helped one of their clients out of a sticky situation.  Why? Because she cares, and those are just the kind of people who do the hard work with little credit.

I salute you, any employee who works with and for the developmentally disabled, the disadvantaged, the helpless in need.  You deserve all the credit in the world!

For the second November in a row, the clients, staff, family and friends of ARC Marion are collecting  nonperishable food items for Interfaith Emergency Services  food pantry in Ocala.  Last year, it was a developmentally disabled ARC Marion client who suggested we do something in the community to help others in need.  At that same time, our local newspaper was running stories about the local food pantries in need of food just in time for the holidays, and the need this year is even greater.   

Interfaith is located on the northwest side of Ocala, approximately 10 minutes away from ARC.  In order for them to receive donations off the street, individuals have to deliberately go to their location. Therefore during the month of November, ARC Marion, located at 2800 SE Maricamp Road, Ocala,  serves as an offiical drop-off location for Interfaith.  With nearly 50,000 cars passing in front of ARC each day, we hope that this effort to reach out to the community will be extremely successful for the folks in Marion County in need. 

Donations will be collected unitl November 20 from Monday-Friday, 8 a.m.- 4 p.m.  Cash donations are also accepted, including cash donations intended for ARC Marion clients to purchase their own contributions for the food drive.  This is just another way the clients of ARC Marion can help the community just as much as the community helps them.  (If you’d like more information about where to send cash donations, please contact us.)

I love being busy, but I hate being busy.  I don’t like it when things are so slow-paced that I get bored. But I also don’t like it when things are going by so quickly that I don’t have time to stop and enjoy the little things going on around me…not taking time to “stop and smell the roses” per se.

On a recent walk through the ARC Adult Day Training workshop I was reminded of how nice it is to just stop and enjoy life.   I was greeted by several developmentally disabled clients who were excited to offer a handshake or hug and just pause to say “hello.” They weren’t the same kinds of greetings that some “normal” people give when they ask how you are and don’t even care or wait for a response.  These individuals genuinely cared about how I was, and what I was doing there on that day.

If I had been standoffish or acted uncomfortable, they would have seen that.  If I had been in too much of a hurry to stop, they would have known that, too. 

In our haste to go on with our daily lives we’ve often taken for granted those simple moments to enjoy life and those around us.  In an effort to be an advocate for those with DD it’s time to be their eyes, too.

Granted, there are those developmentally disabled individuals who have poor vision or are blind and need the use of a cane or assistance, so we truly have to be their eyes from time to time.  But when we stop and see the world through another person’s eyes we can have a whole new perspective, especially when those eyes are those of a person with DD.  Whether they are viewing people who seem to be bothered by their presence or others who are extending a handshake in kindness, people with developmental disabilities can see right through to the heart of you and me.  They genuinely care about each other and about us, too, and they don’t mind taking the time.  As I advocate for them and try to see the world through their eyes, I find myself wanting to be more like them…

Early Intervention Students and Staff in the Annual Costume Parade

Early Intervention Students and Staff in Annual Costume Parade

An annual treat at ARC Marion is the “costume parade” of the children in the Early Intervention Program.  Many of the children come dressed in costumes for the special day, but the EIP program also has an assortment of dress-up clothes for those who aren’t already in fun attire.  The children go to all of the buildings on campus and receive “treats” along the way. 

These special little ones attend programs at ARC Marion until they turn three-years-old.  Through play-based curriculum in a pre-school setting children with developmental delays are given extra special care, attention, therapies and training to give them much better opportunities in life.

The EIP kids are such fun to have around at ARC Marion, and their smiles are contagious… especially when they are getting candy!

Intensive Class # 1 in ARC Marion's Adult Day Training

Intensive Class # 2 in ARC Marion's Adult Day Training Program

This year, our Intensive classes in the ARC Adult Day Training  program made matching tye-dyed T-shirts to wear for Halloween.   The Intensive programs are for those needing the most assistance at ARC Marion.  Amazingly, last week all of the clients with extra special needs assisted the staff with making their own shirts and choosing the colors.  Today they wore them to show everyone else what a good job they did!

As you can see, staff at ARC Marion in all of our programs has a good time with this fun time of year as well. 

 Happy Halloween from ARC Marion!

I have a board member who is also a parent of an ARC client.  She’s been on my board for the past two years and has added a lot of insight to fundraising during her time with us.  However, this year she’s energized and empowered in a way I’ve never seen her.  When I asked Kelley Jenkins to chair our annual fundraiser, “An Elegant Evening of Thanks,” I knew she would take it to the next level, and that’s just what she’s doing. 

She put together a group of friends to help spearhead the effort with the motto- if you ever feel uncomfortable asking someone for money, remember you are asking on behalf of the people who can’t go out and ask for themselves! 

That’s just what we have to do as advocates for the developmentally disabled.  We have to be their voices in the midst of all the noise going on in this world.  Many of them are nonverbal or have small voices as individuals, but when we rally together in support of these wonderful people, all of our voices will be heard in unison! 

Over 50 years ago, thousands of parents united for civil rights for the developmentally disabled.  Today, some of the causes may be a bit different but the rally cry still needs to be heard.  That motto that Kelley is bringing home to everyone she asks this year for Scholarship donations needs to be heard.  Whether we are their voices for equality, their voices for freedoms and liberties, or their voices for funding and assistance, we are their voice- unified – to advocate for the developmentally disabled!

*(Check back in December, and I’ll share the results from the Elegant Evening of Thanks fundraiser,  raising monies for Scholarships for Hope).

Warning- you or someone you know is about to be harshly reprimanded simply because of what you may have just said.  Portions of this blog post are coming from The Vision, ARC Marion’s newsletter, Fall/Winter 2008, but since I wrote it there, I’m posting it here.  It’s important for people to know how we,as advocates for the developmentally disabled, feel about this topic.

Isn’t it time that we start considering the word “retarded” as derogatory as it truly is?  School children and adults alike speak it as casually as they would the word “geek,” but they never truly understand just how offensive it can be.  It is a medical diagnosis, and something that the individual receiving that outcome cannot change.   However, removal of that word from everyday vernacular hasn’t caught on like it has for other lingo.  And you know what words to which I’m referring…stop and think about negative words that were once a part of regular conversation that have pretty much been labeled as hate speech.  Now think about why those were eliminated and “retarded” hasn’t been…  Because the people group to which most others refer when using the word “retarded” in such a negative tone are not able to speak up for themselves.  Period.

Hollywood hasn’t helped matters much either by simply dismissing their use of the word and theatrical depictions of such individuals as mere comedy.  Well I don’t think it’s a laughing matter at all, and I am going to start advocating for the removal of the word “retarded” from people’s vocabulary.  After all, for ARC Marion is the Advocacy Resource Center!

You know who you are.    You are parents, teachers, students, business professionals and even my friends.  You say “I can’t believe how retarded I was when I did XYZ…” or “Stop acting like such a retard.” I have friends on Facebook who have photos with captions like “Simply being a ‘tard.”  There are local radio hosts who use the word so flippantly when referring to each other that they have no regard for the feelings of those who actually deal with mental retardation and other developmental disabilities on a daily basis.

So, now’s the time to make a change!  If you catch yourself saying it in casual conversation, stop.  If you hear someone else use the word negatively, ask them to refrain from it in your presence.  I know I wish I had mentioned it as recently as this month when talking to a close friend.  I even petition teachers to start reprimanding children for using it in casual conversation—consider it as offensive as cursing—and see if we can start making a change in the youth of today to really change the generation of tomorrow.   Our desire is to eliminate the word “retarded” when used in a negative or joking connotation from all people’s vocabularies so that we can once again advocate for the developmentally disabled clients at ARC Marion!  Won’t you help?!

I am so proud of the individuals at ARC Marion who come here to fulfill the mission: to live, work and play to their fullest of their abilities.   Each day 166 developmentally disabled clients attend the Adult Day Training workshop and are given the opportunity to choose how they want to spend their day.  They can do work for various companies in our community like Signature Brands, USA Scientific, Conimar and others.  They can work in the computer lab using programs to learn how to count money or go shopping with a certain amount of money or even write stories and poems.  And they can participate in arts and crafts. 

Shalini Amin

One year ago, clients of ARC were given the opportunity to display some of their artwork at the annual Fine Arts for Ocala (FAFO) Fall Arts Festival.  Hundreds of artists and vendors from around the region showcase their work during the two-day event, and I am proud to say the ARC Marion client artwork will once again be on display in the Children’s Workshop area of the FAFO Arts Festival coming up on Saturday and Sunday, October 24-25 in the McPherson Complex on SE 25th Avenue in Ocala.   In all, 28 different client pieces will be shown from abstract paintings to mixed media, freehand  drawings to watercolors.

Recently I was talking with the Director of the Early Intervention Program at ARC Marion and mentioned to her a very vivid memory from my childhood about my sister.   When she was born, she had very limited movement and couldn’t rollover or sit up or stand because her little legs weren’t strong enough.  She also never wanted to lay on her belly and would always lay on her back.  Even when we placed her on her stomach, she would find a way to get back on her back.

When she started attending the Signal Center, an early intervention type program in Tennessee, one of the first ideas they had to help us didn’t cost a lot of money but was the first step to my sister being mobile.  They told my mother to sew a piece of material across a little outfit of Jennifer’s with enough space for a yard stick to fit through it.  I know my Mom didn’t even use a sewing machine to do it.  She used just a random swatch of material and some thread.  Then, when would lay Jennifer down on her stomach, we would put that yard stick through it so that she couldn’t turn herself back over.  It sort of sounds cruel when you think about it—especially if you had heard her frustration by it all—but just imagine how her neck and stomach muscles started to strengthen as the result of her fussing and fighting to turn over.

I know there are plenty of other costly devices that will do the same thing to help strengthen developmentally disabled babies’  muscles, but if it works, why not just use a stick and some thread?

Unless you have a toddler who watches Noggin on TV, or a school age child who used to watch Nick Jr. on CBS Saturday mornings, you probably have not seen or heard of “Little Bill.”  I know I hadn’t until about a year ago when we discovered the show that now only runs in syndication.  The episodes are based on books of the same name by Bill Cosby, and the concepts and storylines are just perfect for relationship training for a youngster. 

No, I’m not advocating for TV babysitters, but I was raised in the first generation of educational TV like Sesame Street, the Electric Company and 3-2-1 Contact.  Maybe it helps me understand the values and good that this type of television can bring into the family dynamic.  If children are going to be entertained, why not educate them in the process?

Little Bill is a five-year-old boy who is a son, great-grandson, little brother, cousin, nephew, student, friend, and even “father” to a pet hamster. He has many encounters learning about relationships through episodes such as: learning to welcome his first sleepover guest, taking care of his sister’s most prized possessions, what to do when someone says mean things, not interrupting during “Private Time,” and dealing with the chicken pox. 

Both of my sons LOVE the show, and I must admit, I like it, too.  It’s reminiscent in my opinion of good, quality family TV like the Cosby Show in the 80s.  So why do I mention it here?  One of my favorite characters on “Little Bill” is his friend named Monty.  He is a kindergartener with cerebral palsy who rolls around in a wheelchair.  He quickly becomes one of Little Bill’s best friends as they learn they like the same toys and games even if Monty is a bit different.  In one episode, Little Bill helps his dad build a ramp down their back steps so that Monty can play in the backyard anytime he comes over.  Monty even eventually joins Little Bill’s class at school where Little Bill has to learn that just because Monty is in a wheelchair, he doesn’t always need help unless he asks for it.  They are all perfect concepts to introduce a child to someone with a disability.

There are so many great life lessons in this children’s cartoon that adults could garner.  In fact, I have since learned through Wikipedia that introducing Monty into the show actually occurred in the third episode of the 55 that originally aired starting in 1999.  That says to me that the addition of this character was not an afterthought.  He was carefully considered, and the interaction shown between children both with and without disabilities was a key component to the structure of the show.    

I don’t know if my son’s watching “Little Bill” has helped him react to his aunt in such a positive way or not?!  I know that when he sees Jennifer, who he used to affectionately call “Ju Ju” before he could say her name, he wants her to be around.  When we last visited, they only saw each other for a brief time.  She left while he was napping, and her name was the first one he mentioned when he awakened.  Is it Jennifer’s childlike spirit that draws my son to her, or is it his lack of “fear” for those who are different than he is? Whatever it is I’ll give “Little Bill” and his creators some much deserved credit.

I only wish this type of entertainment education could be used on TV programming geared for 16 and older audiences as well.  I believe introducing characters with disabilities into mainstream entertainment should be pursued with the utmost integrity and concern.  Until then, my family will keep watching “Little Bill” in syndication.

A few years back our local United Way hosted their annual campaign kick-off celebration with a twist.  They brought in the comedian, Josh Blue, to be the guest speaker for the event.  Blue won NBC’s Last Comic Standing in 2006 partly because of his humorous jokes about himself.  He lives with cerebral palsy and said he participated in Last Comic Standing “to make people aware of the fact that people with disabilities can make an impact.”  I couldn’t agree more.

Just because a person lives with a diagnosed medical condition doesn’t mean that he or she can’t be impactful for various causes. Blue indicates in a page on his Web site called Palsy Humor why he thinks his comedy works.  Not only is he helping to make CP more mainstream, he says “Everybody is disabled whether you admit it or not…Disability makes us all one.”  Whether folks are near-sighted, have a lisp or walk with a limp, chances are nearly every one of us as some sort of disability.  The question is what is each of us going to do to turn those disabilities into something great?  Start looking at disabilities as abilities in disguies…and that’s no joke!

The ARC Marion Early Intervention Program is truly an amazing place.  Through play-based curriculum children from roughly birth to age three have the opportunity to learn skills to help them grow and develop.  Some children come to EIP who can’t roll over or sit up much less run, jump and play like most little children.  They come in with very limited vocabulary and have multiple feeding and interactive issues.  Yet, miraculously, when they come into a program with like-minded children doing like-minded things, they seem to catch on to the program.  By the time they leave the program at age three, they are so far advanced from where they started.  Families and children’s lives are changed forever.  In fact, 10-12 children “graduate” out of that program each year in the mainstream classroom with no need of special education classes at all.

New EIP swings

One such individual is a freshman at a local high school who is working on his Boy Scouts Eagle Scout designation.  Over the summer, he decided that his Eagle Scout project would be a new swing set for the EIP program at ARC.  Why? Because 12 years ago, he too, was one of those little miracle children who came through the EIP  with flying colors.  He was one of the children back then who was mainstreamed into the public school classrooms following his time at EIP.  He has been in “regular” classrooms his entire life and decided he’d like to give back to the organization that helped to make him who he is today. 

Not only is the finished project beautiful and resourceful for the children in EIP now, but the story has served as an inspiration to many.  It sort of makes me want to give back to people and organizations that have blessed me over the years, too.

I love to “think out of the box” and not do things the same way they always have been.  For years nonprofits have stayed in their zones or “boxes” tending to focus on their own demographics and needs 95% of the time.  I feel that today the lines of separation between nonprofits in most communities are a lot dimmer than one may think.  I’m a strong believer in helping other nonprofits – just because we are nonprofit doesn’t mean that we can’t help you!  That’s why I was so pleased last year when the developmentally disabled clients of ARC Marion decided to hold a food drive for our local Interfaith food pantry.  Their reason to get involved? They are community citizens and understand that people in our community are/were in need.   We will hold anotherIntefaith footd drive this November, but the clients are at it again this month with helping another organization in need.

Success By Six is an initiative of the Early Learning Coalition of Marion County that started in our local United Way with the goal of helping children be fully prepared for school by the time they turn six years old, school age.  For the second year in a row, Success By Six is holding a Pajama drive in Marion County, Fla. titled “Pajamas & Books for Bedtime” for underprivileged children in our community.  The goal is to bring in enough new pajamas (birth to adolescent) and new or gently used books for all of the homeless children in the Ocala area.  The number of children in need is staggering and into the thousands!

When Troy Strawder, the CEO of ARC Marion, presented the idea to ARC clients they were overjoyed.  You see, they remember how great it felt to help Interfaith last year when food collected at ARC fed 66 families throughout the holidays.  This time, they want to help the kids!  Just because they are developmentally disabled does not mean they aren’t caring citizens of their community.  They want to reach people just like anyone else would, so I’m proud to say throughout the month of October our clients will be collecting and donating new pajamas and books for the children in Ocala.  In fact, ARC Marion will serve as an official drop-off location for the Pajama Drive throughout the month.  If you’re local, the address is 2800 SE Maricamp Rd. in Ocala.  Sounds to me like ARC Marion clients are pretty good community citizens and stepping outside of their boxes to help others in need. What about you?

At this very moment, the Senate Finance Committee is working on a bill on healthcare reforms.  As a member of the Association of Fundraising Professionals, I have learned that there are at least 25 proposed amendments that would cap the value of the charitable deduction. This cap would create a huge disincentive for charitable giving!

Currently, taxpayers earning more than $200,000 (and families earning more than $250,000) annually can take itemized charitable deductions at a rate equal to their marginal tax bracket (33 percent or 35 percent).

The amendments to the America’s Healthy Future Act of 2009 would cap the value of itemized deductions at 33 percent, or 35 percent for taxpayers whose income tax brackets would increase to 36 percent or 39.6 percent in 2011.

In other words, they would be taxed at 36 percent or 39.6 percent but would only be able to take a 33 percent or 35 percent deduction respectively for their charitable gifts.

What can you do?

Please call or email your two Senators to oppose any amendments that would cap the value of the charitable deduction. Identify your two U.S. senators.  Use this link to determine your two U.S. senators: U.S. Senators by State Call the congressional switchboard (202-224-3121) and ask to speak to one of your Senators.

(Florida contacts are: George LeMieux (202) 224-3041 info@lemieux.senate.gov and Bill Nelson (202) 224-5274 billnelson.senate.gov/contact/index.cfm)

The following are draft talking points and a draft letter that you can use as templates.

Thank you for taking action!

Talking Points

• Say that you are calling from the Senator’s state.  In Florida, please tell them your hometown and mention that you support ARC Marion and the Heart of Florida Hope Foundation.
• Urge the Senator to protect the value of the charitable deduction by rejecting any amendments to the healthcare reform bill that would cap itemized charitable deductions.
• State that capping the value of the charitable deduction would harm the charitable sector by creating a disincentive for individuals and households who give the most to charitable organizations. Note that capping itemized deductions would harm the charitable sector at a precarious time.  The Giving USA Foundation recently reported that in 2008, the decline in total charitable giving was the greatest since the organization began tracking U.S. charitable donations in 1956. Charities are already reporting that donations will likely be down further in 2009.
• State that in these challenging times, charities and nonprofits already are finding it difficult to fulfill their missions because of reduced donations and resources.  At the same time, charities are being asked to provide even greater levels of assistance.
• Finally, emphasize that your organization and many people in your state are counting on the Senator to protect nonprofits in their state by opposing any provision that would limit the charitable tax deduction.

Sample Letter

Dear Senator [enter name of your Senator],

As a constituent and supporter of non-profits around the country, I strongly urge you to protect the value of the charitable deduction and reject any amendments that would impose a cap on charitable deductions. With so many Americans relying on the charitable sector, now is not the time to jeopardize the charitable gifts that are so important to the strength and vitality of our country.

Currently, taxpayers earning more than $200,000 (and families earning more than $250,000) annually can take itemized charitable deductions at a rate equal to their marginal tax bracket (33 percent or 35 percent). A number of amendments to the America’s Healthy Future Act of 2009 would cap the value of itemized deductions to 33 percent or 35 percent for taxpayers whose income tax brackets would increase to 36 percent or 39.6 percent in 2011.

Charitable organizations are dealing with enormous financial challenges stemming from the economic downturn. Charities have seen an increased demand for their services as individuals and families struggle with financial uncertainty. At the same time, many state and local governments, facing their own budget challenges, have delayed or reduced payments for services provided by charitable organizations. Facing this combination of growing demand and delayed payments, charities are increasingly turning to private sources for support in a tough charitable giving environment.

Limiting the value of the charitable deduction would hurt these efforts by creating a disincentive for individuals and households who give the most to charitable organizations. According to the 2008 Bank of America Study on High Net-Worth Philanthropy, high net-worth households (household income greater than $200,000 and/or net worth of at least $1 million) account for between 65 and 70 percent of all individual giving in America. While these individuals and households would probably continue to give if the value of the charitable deduction is reduced, it would likely affect the timing and size of their gifts. Even though the proposals would not take effect until 2011, many are already delaying gifts and multi-year pledges.   

Again, I urge you to protect the value of the charitable deduction reject any amendments that would impose a cap on the deduction.

Sincerely,

[Please provide your name, your organization and hometown]

Since healthcare is such a hot topic right now, I thought I’d add a little insight from my perspective.  No I’m not going to talk about how the system is broken or how the insurance industry’s regulations and mandates have wreaked havoc on the way our physicians are able to practice medicine… what I do want to offer is some advice to any doctor, medical professional or hospital administrator willing to listen regarding the care and treatment of the developmentally disabled.  They are special people, and they cannot be treated just like any other patients.  Most of them do not understand when they are poked and prodded.  Many do not have the ability to lie motionless in an MRI or for a CT scan.  Some don’t have the vocabulary to tell you what is ailing them, or how long they’ve felt the way they do now.  You cannot treat these patients just like any other, because they simply are not the same.  Their needs are different, and so should your treatment options for them.   Additionally, no two individuals with DD are alike.

Some folks with DD have a terrifying fear of doctors due to bad experiences as children or adolescents.    Some with greater understanding simply want doctors or nurses to talk directly to them in step by step instructions instead of always addressing caregivers.  Careful consideration should be taken in regards to tone of voice, time of day, the individual patient’s mood, etc.  Length of time at the doctor’s office, in the waiting area, in the exam room, or in the hospital, can greatly affect a person with DD as well.  Simply being there for a prolonged period can add to increased anxiety and frustration beyond that of a “normal” person.

If a developmentally disabled patient enters your emergency room or doctor’s office, use the advice and recommendations from his or her caregiver above all else.  Will you need to take a little extra time with this patient? Yes. Should you take that time to determine exactly what tests should be run, or what medications should be prescribed? Yes.  Should you be afraid to sedate them if certain tests are needed? In most cases the answer is no.  Some individuals simply cannot handle the anxiety caused by a doctor visit.  However, if a physician thinks multiple tests might be needed to determine exactly what is going on, get them all done at one time while the patient is under sedation.

I distinctly remember the first time my sister had tubes put into her ears.  The otolaryngologist (casually known as an ENT or ears, nose and throat doctor) came into the waiting room while my sister was still under sedation and told my parents that he recommended removing her very large tonsils and adenoids.  My parents gave the go ahead, and then realized that could have been one of the reasons they would often find her sleeping sitting up in bed.  She probably couldn’t breathe when she was lying down.  I’m grateful to that doctor for having that kind of foresight knowing that one more medical procedure might improve her life.  And it did.

There are too many stories to even begin to tell when developmentally disabled clients I personally know have had to go to the hospital for one reason or another.  Diagnosis and treatment have been prolonged due to the fear of sedating the patient for testing thus causing lengthy hospital stays and more confusion for the individual being treated. 

Think about it like this- when it comes to testing or inserting IVs, some of these patients with disabilities should be treated like toddlers who can bench press 200 lbs.  You would never tell a toddler, “now hold still, honey” or “you can’t move at all” or “stop making any noise” and expect it to work.  And you certainly wouldn’t do that if that individual was bigger than you with the strength of an ox. 

Yes, people with developmental disabilities often have other underlying medical conditions like diabetes, sleep apnea, arthritis, and as they age, Alzheimer’s, but that doesn’t mean you should treat them like they understand any or all of their diagnoses.  They are special people, and when it comes to their medical treatment, it should be special, too.

I can’t imagine being nonverbal.  I don’t mean like a baby trying to learn to talk.  My 15-month-old son babbles from time to time with a “ma-ma” or “da-da” thrown in just to get us really excited, but his aunt, my sister, who is 30 years his senior, jabbers similarly to what we hear from him.    Then there are those who don’t have the ability to even move their mouths enough to utter sounds.  Some clients at ARC Marion with cerebral palsy are in this very position- the world of being nonverbal.

I’ve used this blog before to say how wonderful it was, the day when a special education teacher taught my sister to clap her hands to answer yes or no questions.  Other individuals with more severe cases of DD use blinking or nodding to indicate their preferences.  Regardless of how they communicate, the day you discover that they are “in there,” and they really do understand what you’re saying to them is monumental.  There simply aren’t words to describe it.

Terri "talks" to Troy Strawder through her monitor

One of those WOW moments occurred the day staff at ARC Marion found out Terri could “talk.”  For seven years she sat in her wheelchair in the Adult Day Training workshop with her lovely and constant smile.  Her method of communicating was blinking her eyes, because her cerebral palsy limits the rest of her body’s movement. Then one day the staff learned that Terri formerly used a pointer attached to a helmet to type on an old-fashioned type writer.  She hadn’t done it in many years, and the staff at ARC didn’t even know she could read.   In fact, her family even had a device that could talk for her.

No one will ever forget the day when they heard Terri “talk” for the first time!

I know there is a great need for information about the Medicaid Waiver, because it can be confusing and daunting to anyone just starting the process.  While I am aware that Medicaid Waiver systems are basically in place all across the country, (see map ) the state of Florida is different than most others and is unique.  We are aware that parents and caregivers of developmentally disabled individuals are moving into Florida all the time, and the state from where they are coming may have very different funding processes for the person with DD.  Additionally, new residents may not be aware that the funding they received in one state doesn’t automatically transfer.   Ashamedly, Florida ranks  somewhere between 47- 50 out of 50 states in funding for the developmentally disabled, so people moving here with their DD children probably aren’t aware that the process for funding is lengthy and can take years.  Because I personally haven’t gone through the system, I asked for a little help from Kathy Harris, Senior Program Director at ARC Marion.  Here’s the info in lay terms as plain as I can make it.

First of all, in order to qualify for the Medicaid Waiver an individual must be diagnosed at birth with one of the following disabilities: mental retardation with an IQ of less than 70, autism, cerebral palsy, Prader-Willi or Spina Bifida.  If you have a school-aged child with any of these medical diagnoses, you need to know about and apply for the Medicaid Waiver right now!  The waiting list in Florida to receive these services is into the tens of thousands of names, so if you aren’t already on it, GET ON THE LIST! 

To apply, contact the Agency for Persons with Disabilities in your local area and make an appointment.   (The local Ocala contact is Traci Alesiani, the state coordinator for APD in Wildwood, 352-330-2763).  At that appointment, APD reps will meet with you to determine if indeed you qualify for the Waiver. If you do qualify, they will help you complete the process to be put on the state waiting list for funding.

A “crisis” application for Medicaid Waiver includes: homelessness, senior adult parents who can no longer take care of an individual, the death of a caregiver, or any other significant life change.  If in crisis, APD can determine if a candidate’s case can be moved to the front of the line to get help right away.

Over 90% of the funding for ARC Marion’s 350 clients comes from the state Medicaid Waiver.  The other remaining monies come from private payers, United Way of Marion County funding and Scholarships of Hope, a program of the Heart of Florida Hope Foundation, ARC Marion’s fundraising arm.

The Waiver differs from traditional Medicaid in that Medicaid is a federal-state healthcare program for low income children, individuals and families.  Medicaid Waiver is a specific initiative to fund only those developmentally disabled people groups mentioned above.  If you have a child with DD living in Florida , apply now.  If you are considering moving to Florida with an individual with DD, please call APD first to see what you can do to get on the list now.  If you are in another state, please check with your state organizations to see what funding is available.  The Waiver is the states’ way of “taking care” of those who cannot take care of themselves.

We in “the business” of serving and working with the developmentally disabled have gotten ourselves into a quandary.  While we strive for political correctness, as nearly everyone in this present age attempts to do, we’ve caused much confusion in our terminology and lingo among people of all ages.  Often when I’m speaking to people and refer to the developmentally disabled that ARC Marion serves I have to further clarify just “who” that is.  I continue, ‘You know, those with mental retardation, cerebral palsy, autism, Down’s syndrome and the like.’ Ah, the light bulb seems to come on with that explanation. 

Growing up in classrooms of the 1980s, I’ve always been in school where special education classes were held.  My sister attended a mainstream, public elementary school and even went to high school with me.  So, the inclusion that I’ve encountered (though I’ve heard has changed significantly by state, some for the good and some bad, since I attended back in the day) means that I get it.  Right away.

However those who are just a few years my senior may not remember the fights that parents went through in the 1950s, 60s, and 70s to get their children included in the education system with some sort of regular curriculum.  Some still use the word “retarded” regularly in referencing all developmentally disabled individuals.  While mental retardation is a medical diagnosis, it definitely doesn’t encompass all of the people classified as DD.

We have struggled lately with creating a message for our own organization beyond what we currently have.  ARC Marion- Helping People Develop Their Abilities Since 1959.  While we have spent countless meetings and even garnered advice from local advertising agencies, we’ve not come up with anything better that says any plainer what exactly it is that we do… simply because of political correctness.  Thus the quandary we find ourselves in serving those with developmental disabilities—you know, like mental retardation, autism, …