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, …

Imagine living with a nonverbal developmentally disabled individual who has no means of communication whatsoever.  She crawls around the house, eats at the dinner table, plays with some toys and goes to school on the short bus every day without any way to tell her family what she wants. Ever. Then picture the day when her teacher tells you that she’s learned to clap her hands in response to yes or no questions.  You test it.  You ask her if she wants milk, and she claps her hands to signify “yes.” Your lives are changed FOREVER!  That’s how I feel about the teacher, Karen Bunch, who taught my sister at Arnold Elementary in Cleveland, Tenn.  She changed our lives just like special education teachers across the country do every day.  My sister still uses that one and only mode of communication, and without it we would have nothing. 

I hope that all special education teachers understand that they not only make their lives easier in the classroom when they finally get through new communication techniques, but they also change individuals and families forever!  Thank you, Mrs. Bunch.  My gratitude and the appreciation from my family cannot be expressed in mere words, only applause as we clap our hands to you!

When I was a child, my mother had been caring for my developmentally disabled sister at home for a little over two years and had reached a point she didn’t think she could do it anymore.  Mom cared for my sister the best she could on a daily basis.  She struggled to hold back the tears a lot, and she was a strong woman.  But there was a turning point when I was a child that I will never forget; the day my mother found the Signal Center in Cleveland, Tenn.  It was 1980.  I was almost five.

The  Signal Center, I have since learned, actually was established in Chattanooga in 1957 around the same time ARC’s were popping up all over the nation.  (ARC Marion began operations in Ocala, Fla. under the name “New Hope School for Children” in 1959.)  The Signal Center decided to expand operations east, close to my hometown.  They were an early intervention program where my sister could go during the day and play and learn and interact with others trained to teach those with disabilities.  They were unique and fabulous and just what my family needed at just the right time.

Fast forward 15 years, and I’m starting to work my first job out of college in the corporate world.  I’m given the opportunity to hear a United Way presentation from a funded agency, and in walks the representatives from the Signal Center.  Though the names and faces had changed their mission and what they did was still very much alive.  Through United Way funding, the Signal Center operated close to my hometown and forever changed my family and my sister. 

Being involved in United Way is a “no brainer” for me.  Though I don’t live close to that particular United Way anymore, I still support my local United Way.  They all operate independently, and money raised in each community stays right there to be used locally.  As United Way’s across the country are in the height of the annual campaign season I wonder if there are others who may not have considered that their families or friends have been touched by a local United Way agency?  No my family did not live in poverty.  No we’ve never been victims of abuse.  No, we didn’t ever go hungry like many of the individuals who have benefited from United Way funded agencies across the country, but I, too, have a United Way story.  And that’s why I will always Live United!

As I look at my two, beautiful boys it’s hard for me to remember the countless tears, thoughts, nightmares and stories I used to share wondering if I would be able to birth healthy children.  It’s an interesting role, growing up with a developmentally disabled sibling, always curious to know if you’re carrying something in you that could create another person like her.  My sister was diagnosed with cerebral palsy and profound mental retardation in her second week of life.  We never knew why.  My mother had a rather uneventful pregnancy yet something happened, sometime along the way.  She was born in the late 70s, nearly three years my junior, when there really wasn’t any prenatal testing available to determine anything much to speak of.  And as I grew, there I was, living a life always pondering if there was something living in me, a gene of sorts that could cause my unborn children to be developmentally disabled, too.

I remember distinctly going on a date with a guy in college who had a brother like my sister.  His brother was a little more high-functioning, but was DD nonetheless.  I remember thinking that I didn’t want our relationship to progress, because there were just too many “what ifs” in a potential pregnancy between us. 

And yet, when I see my two precious, healthy children I wonder what all of the fuss was about.  When I became pregnant for the first time, I hoped and prayed during our ultrasound that nothing would look out of the ordinary, and that’s exactly what happened.  I chose not to have any extensive testing just to verify the good results or just to be extra sure everything was O.K.     

Then after I became pregnant with my second child, I didn’t worry so much.  In fact, I don’t remember worrying at all.  Why worry about something you can’t change regardless of the outcome? After all, if they did find something wrong, what would I do? Just because my sister is different doesn’t mean I love her any less.  I owe so much to her, even if she doesn’t really know it.  So much of who I am and what I do is because of her and our unique relationship. 

As more and more children are being born into this world with autism and other disorders, I only hope that their families and support systems understand what all they have to offer no matter their limitations.  I can only hope that pregnant women who have received those so called bad reports about their unborn children will at least take the time to get to know someone with DD.  They are all unique, special individuals who were simply given a chance.  

While I didn’t seem to carry a “bad” gene of sorts and do have healthy kids, I consider myself blessed.  However, to the many parents of children diagnosed with disabilities, you are blessed, too!   Simply being  given the opportunity and responsibilty to parent a child is the most perfect and peaceful blessing I could ever ask for.

How I came to work daily with and for the developmentally disabled didn’t happen overnight.  It isn’t just a job, and it wasn’t my first career of choice.  However, it is something that actually started in me when I was just a child living with a developmentally disabled sister of my own.  She made me who I am. I jumped higher, acted better, sang louder, and reached farther, because I was the only one of the two of us who could achieve our dreams.  

I grew up with the short bus pulling into my driveway every day… almost crying every time I heard kids making jokes and calling others “retarded” in jest… caring for, talking to and loving someone who never has communicated back.  It’s an interesting path that leads me to where I am today, but it really was a no brainer when I was given the opportunity to be here.   I work alongside and raise money to support some of the coolest people in the world, and I count it as a gift.  I am truly blessed.

This blog is something new for my journey and the folks working with me, yet I hope it will provide various insights and directions for those out there seeking more information about their special friends, family members, children and siblings: those who have been labeled with disabilities yet have more abilities than they are given credit.  Check back often to read my advocacy story for special people.

ARC Marion in Ocala, Florida is not only a great place with great people, we have great stories!  We would like to introduce the world to what we know, and how we came to know it.  While our acronym stands for Advocacy Resource Center, we want to be just that.  We advocate for the developmentally disabled in our community, but we also want to be a resource to anyone else in the world living with and/or loving one of these special people diagnosed with a developmental disability.  We hope this blog will serve as an information tool and truly offer the tidbits for which readers have been searching.

The writer is Allison Campbell, who works for the Heart of Florida Hope Foundation, ARC Marion’s fundraising arm.  Allison began as a volunteer board member for ARC in 2003, and joined the Foundation in 2007.  But she’s also the sibling of a nonverbal, autistic sister with cerebral palsy who lives in a group home in Tennessee.  Going forward this blog will be from her perspective, and we hope you’ll find all that is here to be just what you need.  Enjoy!

ARC Marion, established in 1959, is a 501 (c) (3) non-profit organization with the mission: to create opportunities for persons with disabilities to live, work and play to the fullest of their capabilities in Marion County.  ARC stands for Advocacy Resource Center.  We serve over 250 clients annually and are governed by a volunteer Board of Directors.