Latest Publications

Madden Gives Back

Ran across a story today that just blew me away… not only is this an organization in Florida that I’ve worked with before, but they are truly living out philanthropy at its finest.  You can see the full story here, but in a nutshell, Madden, a branding and marketing company in Lakeland started at Noon today and will be donating the next 24 hours of pro bono work to non-profits across their community.  The best part to me is who some of those receiving the benefit are: Central Florida Autism Institute and Achievement Academy, a prekindergarten charter school for children with special needs.

Speaking from the non-profit perspective, having ultra talented branding and marketing professionals give of themselves to create new logos, brochures and more for free speaks volumes!  Now if that isn’t advocating for special people, I don’t know what is?

Autistic Brains

Could it be that those diagnosed with autism actually have heavier brains and more neurons than those without the condition?  This could be just the tip of the iceberg into determining causes and treatments to help some very special people!  Read here to learn more… you decide.

Holiday ARCtistic Expressions

cookie cutter tree

During the fall last year, we began a project within the ARC Marion arts & crafts classes where we converted some of the great original pieces of art into blank greeting cards.  Well, we are at it again with this036 year’s assortment of Christmas and Thanksgiving cards all produced by original artwork of the developmentally disabled clients at ARC Marion.  Currently, we are in pre-sell mode with 16 possible card selections for your choosing.  (You can see all the choices here and here).

This is more than just a typical “fundraiser.”  It’s actually a business venture, a form of social entrepreneurship, for ARC Marion.  In fact, the clients are paid for their artwork if it is selected, and they are paid in the Adult Day Training Opportunity Center for sorting and packaging the cards for purchase.  That’s right, ARC Marion is hiring our own clients to work for us in this business opportunity we hope will succeed.

If you would like more information about ARCtistic Expressions, check it out here or contact us.  Your holiday season could be a little brighter, all because you showed your friends, business associates and loved ones that you are advocating for special people at ARC Marion!

Medical Special Needs

Well, it happened again.  Nearly two years from the time I posted this, my sister had to go to the hospital again.  This time, her group home staff noticed she wasn’t feeling well, something to do with her abdomen and her white count being elevated, so they took her to the local emergency department (ED) in my hometown in Tennessee around midnight.  The email I received from my mother about the ordeal explains it so much better than I could– in a parent’s terms.  She wrote:

They took four viles of blood & fixed a port in her arm to do a CT scan.  When we asked if she had to be perfectly still for that test, they said, “Oh yes, for 8 minutes!”….Why don’t these people realize that a special needs person is not going to understand this and be able to do it.  We convinced them that she would never lie still that long, and they finally took the port out at 5:00 a.m., and we all went home.

I used to work in the healthcare industry, so I don’t understand it much myself.  Why on earth do medical professionals honestly believe that those with special needs can be treated like everyone else?  I understand that everyone’s bodies are pretty much the same biologically, but our minds are all much different.  We don’t all understand pain the same way.  We don’t all understand that medical things need to even happen at all.  Yes, I understand when a grown adult is admitted into the ED you may look at him or her in the same way as you would any other adult, but I beg of you, please think of their communication skills and level of understanding as that of a child- a small child!

Maybe one day, we’ll have special continuing education credits for doctors, nurses and support staff devoted to treating individuals with developmental and intellectual disabilities.  That’s the kind of medical special needs training that will help our healthcare professionals advocate for special people!

Supporting Their Dreams

Carmen Brown of JOY FM with ARC Marion client Richard Kennedy and Sam Tinnesz from Mike's Chair

Carmen Brown of JOY FM with ARC Marion client Richard Kennedy and Sam Tinnesz from Mike's Chair

ARC Marion client, Richard Kennedy, wants people in Marion County to donate new shoes for children in Honduras.    On Friday, August 26 from 4:00 p.m. to 7:00 p.m. at the Payless Shoe Source on 4920 E. Silver Springs Blvd. in Ocala, Richard and other friends from ARC Marion helped Carmen Brown of The Joy FM with shoe collection and preparation for her project “Carmen Needs New Shoes.” Participants simply brought a pair of new shoes to the drop-off site.

“Richard came into my office nearly a year ago to tell me about a mission trip he went on in Mexico with his church,” said Allison Campbell, Executive Director of The Hope Foundation benefiting ARC Marion.  “With tears in his eyes, he told me how sad he was that little children in foreign countries didn’t have shoes.  I knew at that moment, we would help Richard with a shoe drive, and contacted Carmen the next day.”

“Part of ARC Marion’s vision is for Marion County to successfully support the dreams of those with developmental and intellectual disabilities, and this is one of Richard’s dreams,” said Troy Strawder, Chief Executive Officer of ARC Marion.  “We are glad to help a great cause and hope our friends and neighbors will contribute at least one new pair of shoes.

A Story of a Great Person

*This week’s blog was written by guest blogger, Beth Lewis, Director of  Community Supports of ARC Marion.

When we tell stories of people with developmental disabilities, they usually end up being something about money. That’s really unfortunate when the subject of money also has something to do with someone’s life. Stories about funding in the human service realm seem to always trump other good tales about real people.  However, I want to tell you about a great person.

It’s unique the way a developmentally disabled individual has a lifelong effect on service providers, teachers, case managers, and caregivers.  They even help us develop and hone our skills. I call it part of the “paycheck.” (Now isn’t that funny how even that statement goes right back to money.) More times than not, one of these special people touches the lives of many. It can be through a smile, in the way they express themselves, or even from a creative thought. Even through a terminal illness, ”Johnny” has touched lives like this and continues to do so. (I’m not using his real name in order to protect his identity).

The first time I met Johnny, I was an on-call job coach, and he needed a ride from his job at a local steakhouse. As a coach, I was just following instructions, to go and pick him up and bring him home. When I pulled in, Johnny knew I was his ride right away. I guess I looked different than the customers coming in to eat. Over six- feet tall Johnny took my hand shaking it up and down. “I’m ‘Johnny,’” he said. From the time we left the steakhouse till the time we got to his group home, Johnny had rearranged my entire vehicle. All my CD’s were stacked neatly; even my trash was organized with a paper stack and a plastic stack. I thanked him. He thanked me, and that encounter some 10 years ago made an immediate impression on me.

Johnny has never met a stranger. Before his illness, he loved to work. Johnny was quite successful. He got his own apartment and even though he had a few different jobs, he kept steady employment.  Every time I saw him, Johnny would greet me the same way and say my name, too, just in case I didn’t introduce myself to him again. If Johnny went grocery shopping he knew everyone’s name, and they knew his. And when it comes to taking pictures, nobody can smile bigger. Everywhere Johnny goes he makes a lasting impression.

I got the news shortly after he did; a large mass was in his abdomen. My heart sank. Was it treatable? How did it happen? Not Johnny! From that point things moved quickly. Johnny was immediately in for batteries of tests and moved into a nursing facility. After wading through the navigation of insurance, Medicaid and red tape, aggressive treatments began.  Johnny was getting regular intensive treatments to shrink the mass, and then had to be moved to a nursing home facility closer to the cancer center. Changing the catheter made him scream in agony. His apartment, where he had gained such independence, was emptied out, leaving all his caregivers and family devastated.

Last month was Johnny’s 33rd birthday, and the doctors’ reports had not gotten any better. Johnny’s aggressive treatments were not working and even if they had worked, he would have needed a double leg amputation! According to all the “professionals,” the last possible chance for Johnny is a new form of experimental treatment.   They’re assuming he has one year left to live. 

A group of us traveled to see him last week for his birthday.  I wasn’t sure what to expect on the ride to see him. It would be so heart breaking to see our tall,young,  happy, successful, Johnny in the bed withering away. As I walked in to introduce myself to the staff, there was nothing but dread on my face, until Johnny wheeled himself around the corner. “Gonna fix the belly and the leg,” he said. Johnny was full of life and remembered us immediately.  He told me about his favorite football team, and high-fived all the residents as he wheeled by. Johnnygave us a complete tour of the facility, busting open doors and interrupting meetings. I couldn’t keep up with him, and it was great.

I don’t expect every visit to see him in the coming weeks and months to be so wonderful and exciting, but anything can happen. If  Johnny hasn’t taught me anything else it’s to expect the unexpected out of great people.

Unfortunately for many people who work in the health services industry, from those working with children or families to those working  with the developmentally disabled, I think that money is often their bottom line so that they can put food on their own table. However, when I used to work with families in crisis, I always kept it in the back of my mind that it could be me one day, and no one is immune. The difference for some is that often to the detriment of our company’s profit, caregivers sacrifice everything to continue to provide care or service to those individuals who most need it. The big business people who profit financially in this field are those who have never wiped poop off someone’s hand or comforted a mother who just lost her infant to SIDS.  Those profiteers really have no understanding that when you care for an individual who needs you, you want to continue to help them even if their money to pay you for that service runs out. If it’s up to me, I’ll take less pay, because my “paycheck” really is the learning and growth returned to me every time I reach out to help another.

 I know in my heart of hearts that Johnny’s going to be fine whatever the outcome.  And for those of us who really care, we all will be, too.

The Grass Really Is Greener…

 …but I never really knew just how much until now. For a few years, I have talked about Florida Medicaid waiver funding and specifically how Florida ranks 50th out of the nation in funding for people with intellectual and developmental disabilities. I complain and fuss about how ashamed I am that these special people aren’t cared for any better than that 50 ranking shows. How there are 20,000+ people who qualify to receive state assistance but can’t get it and are forced to sit on a waiting list for six or seven years or more.

In casual conversations I have mentioned how in my home state of Tennessee things are different. All people with disabilities are integrated into the school system-not just the “teachable” ones. I talk about the wonderful services my own sister receives in her group home and day services programs back “home,” and how they compare to what we are able to offer in Florida. I even wrote here in March how the governor of Tennessee actually created a new cabinet position, the Tennessee Department of Intellectual and Developmental Disabilities (DIDD) Commissioner.

Well, that Commissioner visited the facility where my sister resides last week, and the information he provided the Cleveland Daily Banner reporter has now solidified everything I have believed for years. Tennessee just knows how to do it better. Part of his visit to Life Bridges was to explain why the state had to make $48 million in cuts to their budget for DIDD, and they still know how to do it better! Just how much better, you might ask?

Commissioner Jim Henry is quoted as saying “People in Tennessee sometimes don’t realize exactly what we have done. Tennessee has been a leader in the South in services for people with intellectual and developmental disabilities for a number of years.” The article goes on to say that state services not only exceed most contiguous states, but Tennessee ranks fourth or fifth in the nation in spending for people with intellectual and developmental disabilities (IDD).

The areas the DIDD chose to cut when they had to make needed budget changes were services that no other state in the nation was providing! Tennessee used to have two personal assistant in-home supports assigned per person for those with IDD living at home with their families. They also are now limiting nursing services to 12-hours a day from the full day of service individuals were receiving. The funds they are saving may help to provide state funding for the (only) 7,000 in the state who aren’t receiving services. Commissioner Henry mentioned those 7,000 specifically stating that those they had done nothing for were “one of my concerns.”

It’s an interesting perspective for me, feeling deep down inside happiness that my sister IS receiving the best possible care she could get anywhere in the South. Still yet, living in Florida, supporting those with the weakest voices who need the most support and knowing if they had only been born elsewhere- just 500 miles north- they would have it so much better.

The most disturbing part of the whole article was that Tennessee officials are looking to their neighboring states of North Carolina, Georgia, Mississippi and even Florida to see how others are doing it differently. If I can make any message clear it is this- Tax payers, legislators, figureheads in Tennessee, listen up. DO NOT look to Florida as a model for how to fully care for those with IDD from a state funding perspective. We can only show you how to best care for these special people when there’s barely a dime to go around. Do not let yourselves get into the tailspin where those with the quietest voices become the easiest to cut.

Tennesseans, keep supporting and advocating for those special people by your putting dollars behind your voice, and don’t ever let it be, like it is here in Florida at times, that your voice is all you have left!

Broken Records ‘R Us

Florida legislators considering funding cuts for the developmentally disabled. 

House and Senate aren’t agreeing.

Balancing the budget on the backs of Florida’s most vulnerable, many of whom aren’t able to speak for themselves.

Sound familiar?  Well immediate action is needed today, and you, our advocates, can speak up!  Visit this Web site to take a stand.  Currently the Florida Senate has $110 million less in their budget than the House does for funding the developmentally disabled next year.  That’s on top of already being 50th in the nation for funding for these special people.   Make your voice heard, and make it as personal as you want.  Here is what my email said to them:

       I am a sibling of a person with developmental disabilities, and I also work everyday alongside a group of very special people who need your help!
     Please adopt the House Budget position and fully fund the developmentally disabled people currently being served on the Medicaid DD Waiver. Please provide adequate funding to avoid any service or rate cuts to our most vulnerable citizens in Florida. 
      Year after year we are dealing with these cuts.  I know times are tough and money is tight, but I ask you, what will these special people do if you stop funding them?  Where will these individuals go without the services they need?  I can guarantee you, they won’t go away!  Nor will their advocates WITH A VOICE like me and thousands of other constituents throughout our state.
       The stress each year in dealing with deficits takes its toll on anyone, but can you imagine the stress on those individuals that are least able to tolerate it?  A break in routine for them can cause irreparable harm.  Walk a day in their shoes, and you will never choose to cut them again!
      Thank you for not only considering this request but taking action now.  I appreciate your service to the State of Florida. May you be richly blessed for the blessing you will bestow to those least fortunate among us! 

Act now.  Visit this site to make your voice heard in the Florida legislature, and thank you for continuing to advocate for special people!

Companion Services

Today we have a guest blog from the Community Supports Director, Beth Lewis.  Beth is sharing about Companion services at ARC Marion, Inc

A service like Companion is described in the Agency for Healthcare Administration (AHCA)/ Department of Children and Families (DCF) Handbook as, “non-medical care, supervision and socialization activities provided to an adult on a one-on-one basis or in groups not to exceed three recipients.” The AHCA Handbook also states, “The service provides access to community-based activities that cannot be provided by natural or unpaid supports, and should be defined as activities most likely to result in increased ability to access community resources without paid support.” Acceptable activities listed include going to the library to learn how to check out books, shopping and volunteerism.

For a person with little or no exposure to a person or persons with developmental disabilities, allow me to describe a typical day of Companion service. We all take for granted the fact that we can stop at McDonalds in the morning on our way to work and buy a cup of coffee. We don’t expect to be stared at or have difficulty in ordering something or giving the correct amount of money to the cashier. Let’s say you had difficulty forming words. You might have to repeat to the cashier several times what it is you want. A line forms behind you, and people are frowning. You might stumble a little when you carry your drink out.  Or possibly you have not gotten what you wanted. The cashier was tired of asking you, so now you have a coke instead of a coffee.

You might be thinking why does a person with all these difficulties really need to be out in the community? When my son was in elementary school, his classroom consisted of not only different races and ethnicities but of different abilities including two children with Cerebral Palsy. The children had an aide to assist them in the classroom, but all the children had exposure to each other.  They developed an understanding that even though one classmate might not be able to talk without his communication board or one classmate might use a wheelchair to go to the cafeteria, they all had commonalities. It was the best thing that ever happened to my child, Adam, who just turned 28 years old. He can approach someone with a developmental disability he meets for the first time without fear or disrespect and knows that we are all human beings of equal rights and freedoms.

So let’s go back to the scenario of purchasing a coffee at McDonalds. Companion service allows for the individual to more easily communicate to a cashier. “Hi, I’ll take a coffee with two creams and no sugar.” It gives opportunity for sitting amongst children and seniors and having social interaction that might develop into a friendship if nurtured in the beginning.

We all have something to offer each other.   That is the magical thing about a service such as Companion. It seems so trivial, but it is vital that we as caregivers and providers give this service of not only allowing individuals to explore ways of interacting with other people but allowing others in our communities the opportunity to meet someone who might not look, act, or talk the way they do.  We don’t want to lose the whole idea of engaging unpaid supports in the community and developing relationships.

Being a friend to someone with a developmental disability is the best way you can advocate for special people!

We Made Some Noise

Ten days ago, we posted how Governor Rick Scott imposed an emergency order with dire cuts to funding for those with developmental disabilities. We are ecstatic to say last Thursday evening those cuts came to an end! 

Florida Senate President, Mike Haridopolos, and Florida House Speaker, Dean Cannon, came to an agreement in the budget that will fund the current “projected” deficit.  Therefore Governor Scott lifted the emergency rule and restored our rates effective Friday, April 15.

The ONLY reason we believe this happened was all the phone calls and visits to our Senators as well as the tremendous media support we received in the effort.  We really had enough advocates expressing an outpouring of concern that really made our legislators notice the plight of our friends and families! Phone calls do work!

Statewide the newspapers were amazing in their coverage.  In Ocala, we are fortunate to have a true friend in Editorial Page Editor of the Ocala Star Banner, Brad Rogers, who is a compassionate and caring advocate for the people we serve. In Citrus County, Jerry Mulligan of the Citrus County Chronicle shares the same compassion and supports people with disabilities tirelessly.  We publicly thank both of these caring men.

However, this fight for those we care about so dearly, the most vulnerable among us, is far from over.  In fact, it’s only the beginning.  Even though the legislators agree to properly fund services throughout this current fiscal year, there are at least $40 million worth of cuts in the House budget and $90 million in cuts in the Senate budget for the next fiscal year. 

We made some noise in Tallahassee.  It’s time for all advocates of special people to turn up the volume!

Fifty Equals 50

You ever have those epiphany moments when things just suddenly become clear?  I hate to sound like a broken record on the state of the Medicaid waiver system in Florida.  I guess it comes up every time the Florida legislature goes into session.  I’ve talked about it here, here and here as well as several other times (just check out any of those tagged) that Florida ranks 50th in the nation for funding for the developmentally and intellecutally disabled.  Yes, that’s dead last!  It’s a disgrace, and makes me pretty ashamed to call myself a Florida resident for the past 10 years.

Then yesterday as I was listening to the radio, I heard an ad by the Florida Chamber of Commerce, and it all started adding up to me.  The whole issue of taxpayer funding going toward pensions for government workers is in the forefront all across this country, but I heard on this ad the most disturbing news of all… Florida is one of the only states in the union that fully funds pensions with absolutely no government employee contributions at all!  There’s a fight across the country for more government employees to pay a larger portion of their retirement, but nowhere else is the discussion about simply starting to pay for their coverage. Amazing! 

Couple that with the continued cuts received by the developmentally and intellecutally disabled in our state… yes, Governor Rick Scott signed an “emergency executive order” just one week ago enacting drastic cuts in funding for services for the state’s most vulnerable population… and you have the answer.

Florida is the retirement capital of the world – my words -  so why wouldn’t any worker who already lives in Florida not want to retire as early as possible.  When those workers are government employees, it puts a bind on the budget to fund all of those taxpayer-fully funded pensions.  So, where do they take that money?  From the most vulnerable Floridians who don’t have loud voices and essentially don’t equal a voting block–the developmentally and intellectually disabled.

We would simply like to ask this question: The next time someone working for the government questions why their pensions should start costing them anything, we just want them to think about where they money is coming from that pays for them now?

It’s time that Florida stop being 50th in the nation for spending for the developmentally and intellecutally disabled.  And it’s time that Florida stop being the one of the only states in the union that fully funds government pensions.  That would really be a way to advocate for special people!

The Social Challenge

The Social Challenge.

Can’t say that we have ever made two posts in one day, but this is so needed.  We’ve made reference to this very thing before.  Please check out this article and see more at the link above and JOIN the cause!  There’s no better way to Advocate for Special People!!!

A Third Party Perspective

My mother works in administration at a University that trains students in all sorts of fields of study including special education.  In her 20 plus years there, she’s had a few chances to share a parent’s perspective of the special needs education system to prospective teachers.  One such opportunity came this week. 

Working with the developmentally and intellectually disabled every day, I am pretty used to telling my story… well our story as a family with a special needs member.  However, it’s not something my mom does that often, so I willfully gave her a few tips and things I thought future special education teachers might need to know including:

  1. Special education teachers should never give up, no matter how long it takes.  The challenges they face in the classroom are just the tip of the iceberg compared to what families deal with 24/7.  Any kind of communication method they utilize in the classroom will carry over into the home and work for the rest of that individual’s life!  It can be truly miraculous if they don’t give up!
  2. Not every state has the same educational goals when it comes to those with special needs.  Some states and counties are very inclusive, while others tend to provide separate schools or learning environments for the developmentally disabled.  Prospective teachers need to be prepared for whatever setting in which they land.
  3. The teachers of tomorrow can help mold attitudes of their peers in education by working to eliminate the word “retarded” from everyday vernacular among students of all ages. 

…and a few more.  My mom told our story and then some, including when my sister moved into a residential group home that I’ve referenced before.   Today, the professor sent her a thank you, and it just further reiterates to us how great it is when other people out there get it!  Here’s an exerpt from her thank you:

“I admire you all so much. It may not be my place to say this, but I think you can be proud that your daughter is living as an adult and not with parents at home. I know this may have been the hardest thing for you, but this is what we expect of our adult children. I think that it is wonderful that she wants to be there in her “own place.”  This is how it should be for all young adults. I tell my students that our aim is to make students with disabilities live in as normal a setting as possible which includes living as independently as possible.”

How great it is to hear from a special education professor that she is teaching her students the very same practices and philosophies we are at ARC Marion!  In fact, independence is what we strive for in all of the clients who attend the programs within our organization. 

I’m so happy to know that our family is having an impact on how others view those with special needs– including the very ones who will be teaching those with disablities for years to come.  Now that’s what I call advocating for special people!

Extremes

As state legislatures are convening all across this country voting on budget measures and working on new laws for their constituents, the fight for those with the smallest voices- those with developmental and intellectual disabilities- is stronger than ever.  That’s why it’s so interesting to note two totally different reactions at the state level in recent news. 

In the state of Tennessee, that I have referenced before for their progressive thinking, they recently created a Department of Intellectual and Developmental Disabilities (DIDD) so that people with developmental disabilities can have a real voice within that state.  In fact, the newly appointed commisoner of the DIDD is the father of a son with severe autism and cerebral palsy.  Jim Henry actually appointed his son, John, as a deputy commissioner in a ceremony this week.

Then we have the representative in New Hampshire who resigned his post yesterday after making comments to a constituent stating: “You know the mentally ill, the retarded, people with physical disabilities and drug addictions – the defective people society would be better off without.”  He later said they should be sent to some place like Siberia to clean up the population.

What a difference of opinion among elected officials and the developmentally and intellectually disabled.  In Florida, we are about to take on our own fight with our newly elected governor’s budget reflecting significant cuts ($174 million) to persons with developmental and intellectual disabilities.  It doesn’t seem to let up. 

In coming days and weeks, we’ll be posting specific information about legislation in Florida, and how Florida residents can help stop the cuts.  It’s time for our elected officials to start advocating for special people, too!

When Your Job Can Mean Saving a Life

Richard Johnston

ARC Marion client, Richard Johnston, lies on the stretcher today to show what he did last week as Marion County Fire Rescue paramedic, Ronnie Santana, looks on.

Last Thursday, clients and staff at ARC Marion were going about their morning, business as usual, when the unusual happened.  While on break, a client in the Adult Day Training (ADT) job skills program got choked on a piece of food and started turning blue.  Staff immediately sprung into action preforming the Heimlich maneuver, life saving training each of them knows so well. 

I learned about the incident right after paramedics had arrived.  I was giving a tour to individuals who had never been on our campus before, and when we pulled into the ADT and saw an ambulance and another paramedic unit, we knew something was awry.  In fact, our scheduled tour guide through the building was one of the staff members involved in the life saving action.  There were three ladies that day who administered techniques that ultimately saved the life of a intellectually and developmentally disabled man. (By the way, I finished our tour having the unique privilege to share that the man’s life had been saved by our staff members that day.)

Today, the crews who responded to last week’s call from the Marion County Fire Rescue ambulance and the Ocala Fire Resuce came by to commend the ladies who never faltered in their dedication to the procedures that ultimately dislodged the piece of food, clearing the client’s airway.  By the time the emergeny crews arrived last Thursday, the patient was in stable condition. The crew members noted without the ladies’ quick response, the outcome could have been different.

All ARC Marion staff are trained in CPR, Heimlich and other life saving techniques in the hopes they never have to use them.  However, on this day, that valuable, necessary training saved a life!  That’s what we’re about: advoacting for and sometimes even saving special people!

When Routine Disrupts a Plan

I had the wonderful opportunity to spend a week in Tennessee with my family over the Holidays.  It was the first time I had seen my sister in over a year.  She doesn’t travel, and the birth of a new child in our home put a damper on our travel plans for a while as well.

It was great to see how my kids interacted with her, essentially a child trapped in an adult-sized body.  Perhaps I’ll blog about that one day, but now I want to talk about Christmas Eve night in my parents’ home.  Every year since my sister moved away and into a group home for developmentally disabled individuals like her, she has come home for the Holidays and spent the night at Mom and Dad’s.  Some years it has been easier than others, but in the recent past it has gotten more and more difficult.  She enjoys taking naps in her big full sized bed (she sleeps in a twin in her group home), but she doesn’t seem to understand why she would spend the whole night there.

Over the years I recall her waking up all hours of the night being ready to leave or even one year sitting on the side of the bed all night long in her pajamas not wanting to lie down at all.  This year, she didn’t even get that far.  My Dad came home with all of her gear in tow.  Clothes for the weekend, all of her medications, a couple of small bags full of items she needed for a two day stay.  She did great at dinner and after dinner with the kids.  Then it was time to put on her pajamas.  Not time for bed but just time to relax.  She didn’t want any part of it.  She would not allow my parents to take off her shoes and leg braces.  In fact she got quite upset at the notion that they thought she was going to change clothes.

My parents were especially upset, because it was Christmas Eve.  She is supposed to be a part of our home on this special Holiday.  She is a part of our family, after all.  What would others think of us if we didn’t even have her stay home on Christmas Eve?  I tried to help them understand that it has nothing to do with us and everything to do with her.  Being in her routine makes her happy.  It brings her comfort.  It’s familiar.  She hasn’t lived in my parents’ home in for roughly 20 years- much less ever stayed there with three little boys (my children) in the house sleeping in the room next door to hers.

Around 8:00 pm they loaded up all of her gear, put her in my Dad’s truck and drove her back to her home, all the while hearing her cackle in laughter.  When she arrived back to her group home, the workers gave her some colored papers, her favorite, to look at and play with.  Again, she was overjoyed to be there.  Mom and Dad left her with the new plan to pick her up the next morning for Christmas Day with our extended family. 

When Dad arrived to get her the next day, she was well rested and happy.  She had only needed to stay on her routine. 

Developmentally and intellectually disabled people are wired differently than we are.  Routine is something they thrive on, and when it is disrupted, essentially their apple carts are overturned.  Though it wasn’t the plan my parents had intended, it turned into the plan that worked best for her and our family as a whole.  We saw my sister several days over the Christmas Holiday, but none of them involved an overnight stay.  It wasn’t the original plan, but sometimes special people’s routines can disrupt our plans.  And that’s just fine with me.

Merry Christmas from ARC Marion

“Tis the season to be merry and bright, so here are a few of the smiling faces seen at the recent ARC Marion client Christmas party.   May they bring you joy and happiness.  We hope that you and yours have the most blessed of Holiday seasons.

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Giving Back to Parents

I had a parent of an ARC Marion client hobble into my office, literally.  She recently had a slip and fall type accident that resulted in a hip fracture-quite a surprise for someone her age-that in turn has her in a wheelchair or using a walker for a few months!  Her life has been totally turned upside down, just in time for the holidays.  She noted, however, how her son has been her saving grace.  Born with Down syndrome, she’s always been his caregiver.  Now he’s giving back to her!

She taught him how to use their Keurig coffee maker, and now he brings her a cup of coffee in bed every morning.  He’s helped her with everything she needs, essentially waiting on her “hand and foot” like she has done for him all of his life.  But the best part is the joy that it is bringing him to help his mother.  She said he just loves every minute of it–finally able to repay her in a small way for what all she’s done for him all of his life. 

People with developmental and intellectual disabilities truly are wonderful, special gifts to any family.  It warms my heart to know that this son is now having the opportunity to show how much of a gift his caring, loving, supportive mother is to him as well.  That’s why I (and she) will always choose to advocate for special people!

Right Down the Street

I posted on Tuesday that we were going to limit blogging to once a week and only for very pertinent topics of interest… then I opened the local newspaper!  Headline reads in today’s Ocala Star Banner: “School district: Teacher and aide verbally abused disabled student.”  The 7-year-old child’s mother caught the whole thing, at least one day of it, on a digital audio recording she illegally placed in her child’s backpack.  Thank goodness for mother’s intuition!

A Sheriff’s office report notes that this teacher, Rhoda S. Richardson, was “one of the best teachers and a very caring woman.”   Wow, she had someone fooled.  The article mentions several things the teacher’s aide, Deborah J. Adams, did by berating the child, making her stay in soiled clothing, and threatening to physically harm her.  However it’s the teacher with whom I have the biggest problem.  Teachers have special training and extensive education for what they do.  For that, teachers are paid well, especially special education teachers.  I’ve blogged before about how awesomely unique the educators are who have chosen the special education classroom as their field of occupation.   Sometimes their work is hard.  I don’t doubt that.  Just ask any parent or sibling of a special needs child.  They live it everyday- even on Teacher Workdays, In-Service days, Holidays and in the summer time when school’s out!  But to knowingly allow a student, ANY student, to be treated like this one was is not only wrong, it’s just plain inhumane.  And she was getting paid for it.

It took a seven week, paid-leave investigation for the conclusion to be made to fire these women.  It’s now waiting on school board approval to become final.    The Sheriff’s Office and State’s Attorney’s Office decided they didn’t commit any crimes to have charges filed against them.   I suppose they don’t have any evidence of physical abuse.  Just a verbal assault against a developmentally and intellectually disabled child that I would call a hate crime that’s not illegal.  I guess they also only have one day’s worth of recording, and there must not be any other children being harassed on the tape?  Wow, wouldn’t it be nice to have more than that… if they did it to one child, how do we know they didn’t do it to all?

The school superintendent, Jim Yancey, is quoted saying he was “shocked that this was going on in our School district.”  I’m shocked that it was happening right down the street from my house, right down the street from ARC Marion, in one of the community’s top ranked elementary schools that allegedly is a standout for their special education program.  I can’t wait to find out how long this teacher has been an educator there to see if she’s one of the reasons they’ve received numerous accolades.

I only blog about it today to make people aware that the developmentally and intectually disabled are still being treated heinously all across the country, even in their schools, even right down the street.  I applaud the mother for doing her own investigation, whether it is considered illegal or not.  Without it, these two ladies could have continued the abuse in the name of education.  Let’s all never stop advocating for special people!

Christmas Cash and Cars

We’re doing a bit of a test around here to see the value of our blog.  If you are a frequent follower, you may have noticed we missed an entire week last week.  We’ll blame it on the busyness of the holiday season, but we have honestly decided to limit posting to once a week.  You’ll start to see a bit of a slow down so that we can focus on really great stories we’ve seen in and around the national news or here locally that are truly showing the perspective of advocates who make a difference every day for special people.

WebOne such person is Chris Spears of Prestige Auto Sales in Ocala, Florida.  Chris approached us in August with an idea for a fundraiser for the holidays.  He wanted to give all proceeds to  two organizations, ARC Marion and Interfaith Emergency Services in Ocala.  The event, Christmas Cash & Cars is coming on December 18 just in time for the season.  For a donation of $10, individuals will be put into a drawing for $3,000 cash.  The ticket holder must be present to win, and tickets are available all over town as well as at the event on his car lot that day.  One lucky individual will get some much needed Christmas cash in the middle of a Saturday afternoon a week before Christmas.  Plus, all of the donated funds from ticket sales are split between the two deserving organizations.  It’s a win-win for us all. 

We thank Chris for his hardwork and dedication to making this upcoming event a success.  In the spirit of the season… thanks for being a real advocate for special people!

Happy Thanksgiving

As we approach the Thanksgiving holiday, it’s truly a time for us to count our blessings. For those friendly faces, for the kind deeds both big and small, for the support and hand shakes, for the contributions both financial and voluntary, for the advocacy and assistance…. for all you have done for special people with developmental and intellectual disabilities this season and all year long, we say THANK YOU!

My Buddy

My office phone rang yesterday afternoon just a little after 4 o’clock, and  it took me and the receptionist off guard.  In the many years I have known the caller who happened to be a client at ARC Marion, he has never actually picked up the phone and called me.  I see Terry often.  He comes by my office at least three times a week just to say hi, shake my hand and ask how my children are doing.  However in all this time, he’s never called me.  In fact, I don’t know how many times he’s actually called into ARC Marion and had the receptionist transfer his call.

Allison Terry crop

Me with Terry at last year's Evening of Thanks

She told me I had a call from Terry, so I used my standard greeting for any caller to the Hope Foundation.  On the other end of the line I hear Terry say in a frazzled tone, “Hey, Alice (that’s what he calls me).  Buddy, you okay?”  To which I replied, “Yes, I’m fine, Terry.  How are you today?”  He proceeded, almost cutting me off.  “Who’s bothering you?”  It took me a moment to realize what had happened.  Just a few minutes earlier I was outside of my office in the parking lot talking about our event coming up this weekend, An Elegant Evening of Thanks.  The two people with me were both getting excited about some ideas we had for the event, and we were most likely talking pretty loudly, using our hands in a boisterous way.  A way that someone sitting on his group home front porch might have thought looked like an argument.  I quickly told Terry “Oh, no, Terry.  I’m just fine.  We were just outside talking.  Everything is okay.  How are you?”  Terry then said in the most sincere way “Oh, okay.  Well I just wanted to be sure no one was getting on you… No one getting on my buddy.”  I assured him I was fine,  thanked him, told him I would see him later and immediately called the receptionist back to tell her the reason for his call.

I sat there a few moments amazed.  I told my husband the story later that night, and he was pretty proud of Terry, too.  He can’t wait to see Terry at this Friday night’s event to tell him thanks for protecting me.   Often times people with developmental disabilities are not regarded as highly as other people considered to be normal, but I, for one, am very proud to call people with DD my friends.  And for one special person named Terry…I call him my buddy!

Veterans Give Back

**In honor of Veteran’s Day, I asked a former employee and Viet Nam veteran, Frank Champ, to be our guest blogger today.  Here is his story.**

Back 14 years ago I was offered a position with an ARC in Manchester, CT.  When the CEO interviewed me she admittedly was impressed with my credentials and began the interview with this question, “Are you looking for a position that will change your life?” I had been working to better myself since college.  With two degrees and a lot of business experience I answered “Yes” and proceeded to accept the position, not knowing how it would affect me. I knew the job was working with developmentally disabled adults and had read a lot about what they did at ARC but was not prepared with the transformation I was about to go through. 

I am a Viet Nam veteran, an ex-Marine and suffer from Post Traumatic Stress Disorder (PTSD). I am fully aware of what it’s like to be disabled from the public’s point of view. When I returned from the war I had never thought that how and what I did for my country would be so looked down upon and so reviled.  My fellow servicemen and I were unaccepted in some people’s eyes. I have taken abuse and ridicule, been stared at and turned away from since my diagnosis in 1997. Yet through it all, I believe God allowed me to understand why we are truly here. Why I am here- To serve others! 

In working with these special people, I see all forms of disabilities and all manners of need. And I often see the same reactions I have experienced with looks, stares, backroom comments and displeasure. Yet, through them I have learned honesty, forgiveness, understanding and a bond of belonging that is so strong you can’t put words to it. I have learned from individuals who have issues far more complicated than mine, yet they carry such an incredibly positive attitude about everything. The ones I’ve worked with show me the joy and happiness of life. 

I have forgiven the people and the country for the way I was treated, laughed at, and the way the Government, VA and VFW’s and others ostracized me, took benefits way, made benefits hard to get and made life difficult to get assistance. However, when I moved to Florida seven years ago and started working at ARC Marion, I saw the same things happening to the developmentally disabled persons in this state that happened to me after the war. 

Things here in Florida have not changed much.  In some ways they have gone backwards.  An individual with disabilities is still treated as a burden of society. Too many times their benefits are taken away, their living standards are cut to bare basics, and they are not represented as the honest and caring Americans that they are.

 I have recently retired from my job at ARC Marion and wouldn’t have been comfortable writing this when I was an employee.  Now without any interference, I choose to loudly stand up for the rights of these special people. I can write letters to government officials. I can protest cuts and changes.  I can make a loud and clear statement for what is right and what is wrong with the treatment of people with developmental disabilities. There is no reason that what is happening to them is justified or should be allowed. They should not have to worry if next year they will be unknown to this society or to this government.

I am proud of my service to my country and of my fellow veterans.  And I’m proud of the special people with developmental disabilities whose rights we fought for and will continue to fight.  They overcome extreme obstacles every day, and all Americans should stand up and support those who cannot speak for themselves.  We can all become advocates for these special people, so this tide of disregard will change.  I long to see a better future for them all… it’s what I’m looking forward to in my retirement the most.

Child-Sitting Network

In talking with a client’s mother the other day I realized something that is lacking for families of the developmentally and intellectually disabled- a child-sitting network.  I don’t want to use the word “babysitting,” because the children needing to be looked after are essentially all adults.

I’ve mentioned before how my family used to take vacations when I was a child and often left my sister at home.  Sometimes my parents would go and leave us both at home.  The people who looked after my sister and sometimes me were either adult, female college students or couples, sometimes with families of their own.  All of them already had a relationship with my sister because they either watched her in the church nursery (yes she went to the nursery even as an older child) or were teacher’s aides for her in school.  My parents actually had a couple of choices, and different people were used at different times.  I’m sure it wasn’t always easy, but I remember it always working out.

Because ARC Marion provides 24-7 care for over 50 individuals in our group homes, we already have staffing issues from time to time with that.  We can’t really offer up any names of people who might be available for a week or two to look after an individual who still lives at home with his or her parents.    Still there are parents who travel often who need options.  One is even interested in hiring someone part-time on an ongoing basis, but doesn’t really have a network in which to turn. 

We don’t have one here either, but I would love to somehow be a resource for these parents.  Caregivers for the developmentally disabled are truly unique and wonderful people who can see the beauty and joy these special people bring.  Often the job requires changing diapers and feeding the person who is a full-grown adult.  It would always require offering support and companionship to the individuals in their care.  It’s a need that doesn’t have a simple answer.  I welcome any thoughts or suggestions on just how we can find a solution and make it work for everyone.

Looking for a Special Gift?

ARC Marion is doing something for the first time that we hope is a huge success.  It was birthed out of a conversation that has lead to what it is today- a new project for ARC Marion clients to rally around and support.  In speaking with a local businessman about Christmas gifts for his clients I talked to him about giving something with a dual purpose.  “What if you gave them stationary or blank cards to reuse?  Every time they used them they would think of you.  But better yet, what if they served a dual purpose liked helped a non-profit at the same time?”  He liked the idea, so we ran with it.

Just in time for the holiday season, ARC Marion has available for purchase box sets of greeting cards that are blank on the inside and the outside features one of four different original pieces of ARC Marion client artwork.  They come in boxes of 12 cards (three each of the different designs) for $15, and all of the proceeds go directly back into client services at ARC Marion.  The other unique thing about this project is the packages of cards are all put together by the clients in the Adult Day Training program.  They are responsible for folding the cards, counting them out, putting the envelopes in the boxes, folding the boxes and preparing them for purchase.  Special thanks to Pratt Industries for donating the packaging for the cards.  Now don’t you think that sounds like a special gift?

If you are interested in buying a set for yourself or someone else, please visit http://mcarc.com/online_store or come by the ARC Marion campus anytime Monday-Friday 8 am- 4 pm.  We are very excited about this new venture, and when you purchase them, you’ll be helping to advocate for some pretty special people.

A Group with a Cause

Coming up on November 19 is one of the can’t miss events of the year in our community- our Elegant Evening of Thanks event.  This marks the 12th year for the annual community celebration, and year after year it has grown by leaps and bounds.  This year will be no different.  What used to be an event simply to recognize our friends and partners has become one of the most successful fundraisers for our organization due mainly to the ladies involved! 

For the second straight year, Kelley Jenkins, Heart of Florida Hope Foundation board member and mom to Jessica, an ARC Marion client, is serving as the committee chair, and she has brought together a dynamic group of 11 other ladies from the community who are just as excited about this party as we are.  They know all of their efforts are going to the great cause of raising funds for the disadvantaged developementally and intellectually disabled in our community, and they are proud to help. 

Last year $75,000 was pledged and donated through this one night event, and their goal this year is $100,000!  We hope they not only meet their goal but exceed it!  If you are in Ocala the Friday before Thanksgiving this year or any year, we guarantee the Elegant Evening of Thanks is the place you want to be.  To RSVP, please visit our tickets page.  See you there!

The Point e-News

The Point Mastehead onlineHot off the presses, or at least new to a Web site near you is the current issue of ARC Marion and the Heart of Florida Hope Foundation’s The Point newsletter.  Please check out what all is going on with our great organizations by clicking here.  If you would like to be on our regular email list to receive our newsletter without delay each time it goes out, please contact us.  As always, we welcome your feedback, suggestions and new ideas.  Our goal is to continue to make “The Point” that we are the Advocacy Resource Center of Marion County, advocating for special people, and we put our Clients First!

Sibling Sympathies

One of our local magazines, Ocala Magazine, featured a story in Septemer about Stirrups ‘n Strides Therapeutic Riding Center in Citra, Florida.  They have programs specifically for people with disabilities of all ages where they are able to ride and learn about horses.   It wasn’t that article that caught my attention.  It was a short half-page piece at the bottom of the article that was titled “A Tribute to the Mothers of Special Needs Children” by Christine Spicochi.

While I didn’t really agree with the tone of the piece, I could agree with much of what was said. It has to be difficult for parents to have big hopes and dreams for their children only to learn that many of those dreams will never become a reality for a child with intellectual or developmental disabilities.  However, one statement she made stuck with me, because it was about me.  Spicochi wrote “The brothers and sisters of these children with disabilities are made to do with less and mature faster than most, but will shine as they will give back to others because of what they have learned.”

I don’t think I would ever consider being one of those who did with less as far as material things go, but I do remember playing alone a lot as a child even though I had a sibling less than three years younger than me.  As I see my two oldest boys playing together, often I remember I never had that.  They are truly blessed to have each other.  One of my dearest friends as a child was an only child, so she didn’t have siblings either.  She’s also the one that always makes me think about how quickly I matured as a child (another point of Spicochi’s).  Though she was a few months older than me, I distinctly remember thinking how immature some of her actions and words were.  Isn’t that crazy to think back to when you were five or six years old and remember your friends were immature.   I guess that’s not necessarily “normal” is it?

Spicochi’s last statement of giving back to others touches my heart.  I guess she’s right.  I didn’t give back as much in my younger years, but as I’ve gotten older, I’ve seen the value in volunteering, in donating my time, talents and treasures to various causes and people.  Is it because I have a sibling with a disability?  I don’t know.  Maybe it is. 

I talked to a parent of one of the clients at ARC Marion the other day who mentioned she had two children, one with a disability and one without. The one without is nearly three years older than the sibling with the disability, just like me.  I told her that I bet we have a lot in common, and she said that I’m probably right.  I can only assume that all of us, siblings of the developmentally and intellectually disabled have this common bond that no one can explain.  Though we don’t know each other or the stories behind our lives, we can all relate and understand how we got to where we are today.  Our siblings helped to mold our character, our personalities, our relationships and even in some cases our professions.  Because of our journeys, we will continue to advocate for special people all the days of our lives.

Client Artwork Featured at FAFO

For the third straight year ARC Marion client artwork will be featured in the children’s workshop area of the Fine Arts for Ocala Fall Arts Festival.  Ever since we started putting art in the exhibit, the developmentally disabled clients at ARC Marion have been so excited to work on projects all year long in hopes that their special pieces might be selected.  We only have the opportunity to place 30 projects, so the selections are tough, as you might imagine.  However, we are proud of what each of the clients can do through art. 

If you are in or around the Ocala area, please come by FAFO this weekend at the McPherson Complex on SE 25th Ave just a few minutes from the ARC Marion campus.  Admission is free, and there are plenty of wonderful exhibitors, including ours.  So, be sure to check out the Children’s Workshop area, too.  You won’t be disappointed!

A Bus Driver

As a little burst of cool air came through Florida this week, I began to think of how much I love and miss really seeing the seasons change.  It also caused me to reminisce of how people seem to come in and out of your life for seasons, too.  One such person that came to mind was named Mr. Bullington.

Mr. Bullington was the bus driver for my sister’s yellow “short bus” the whole time she was in elementary school.  He drove the bus and parked it in our driveway every weekday morning while I walked down to the corner to catch a different school bus of my own.  Though she and I attended the same high school, we didn’t go to the same elementary school. 

In my mind’s eye, I can’t remember exactly what he looked like.  I picture a slender man with graying hair and a kind smile.  He was a sweet man, always helping my sister on and off of the bus.   In those early years, she wasn’t able to walk, so I can remember my mother or I strolling her out in a wheelchair- like-stroller for children, carrying her onto the bus and putting the stroller in the back.  I wonder if he ever even saw her walk.  She can walk now with the use of leg braces while holding someone’s hand, but she doesn’t need a wheelchair or walker any more.  He may have never seen that with his own eyes.

I know many years later when my parents were interested in buying a hanging wall clock, they bought a couple from him.  Apparently that’s what else he did for a living, repairing and rebuilding clocks.  At least one of those clocks still hangs in my parent’s living room.  I think of Mr. Bullington when I see it, though I never even knew his first name.

I think every bus driver I’ve ever known including my uncle and other family friends had more than one job.  I suppose it makes sense.  They work for a few hours in the morning and a few hours in the afternoon.  Maybe they don’t make enough in those few hour blocks to support their families?  I guess I never really thought about it until now.  I know I remember my own bus driver’s from elementary school—Mr. Barber, Mr. Felder and Tilda on bus route number 40.    

I can also say for certain, Mr. Bullington was my sister’s only bus driver in all of her years attending that elementary school.   He meant a lot to our family and my sister.  Knowing she was safe and secure on her ride to and from school must have surely put my parents’ minds at ease. 

He was a caregiver for several special people on that bus for just a few minutes each day, but he really made a difference in even me.  I think he passed away a few years ago, but I still want to say thank you to Mr. Bullington and all of the bus drivers of the yellow short buses everywhere, including the one that pulls into my neighbor’s driveway every day.  Some may joke about those iconic symbols of disability, but I ask you continue to hold your head high and be proud of what you do as you assist and advocate for special people!

Bully Pulpit- What Would You Do?

In September a Florida father, James Willie Jones, was arrested and later charged with two second degree misdemeanors for storming onto his daughter’s school bus and yelling and threatening students who were bullying her.  He has since repeatedly apologized to the children affected who weren’t involved as well as the manner and tone with which he conducted himself.  What makes this case important for me isn’t just the bullying.  It’s the fact that the daughter has cerebral palsy therefore is being bullied for her disability.  How sad!

It’s a fact of life.  Kids are mean.  Funny thing is, we were all kids once, and everyone can remember at least one instance if not countless where he or she was also a victim of some sort of bullying incident.  In most cases, bullies are often bullied themselves either at home or in other settings that cause them to retaliate and be bullies themselves.  But what are we to do for the defenseless with disabilities?

Mr. Jones and his wife had tried to contact the school’s guidance counselor to discuss the matter prior to this incident, but their call was not returned.  So he reached a breaking point.  He did something he should not have done and turned into a bully himself by threatening middle school children on a school bus.  However, the nationwide support for him has been overwhelming.  Parents across the country have been applauding and rallying around this concerned parent who stood up for his daughter in her time of need.  It does make me wonder if those same parents are also talking to their children about taunting and bullying.

As of late, I have even had to correct my three-year-old from taunting his little brother in that kind of “nanny nanny boo boo” tone that kids can get.  Isn’t that where it starts?  And what about bullying a child with a disability?  It’s always easy to push on the weaker kids, right?  Just like my older son taunting his younger brother.  I also wonder if the children on the bus were also victims of their environment.  Had they not been exposed to other children with disabilities?  Had they seen their parents, friends or family members possibly talk in a degrading manner to someone or about someone with a disability?  Did they hear and use the word “retard” in casual conversation?  Did they make fun of the short bus? Were there other kids on their bus who were tired of hearing the bullying but chose to do nothing about it?  So many questions flood my mind when I think about this case.

The real question is: What would you do?  As the parent of a developmentally disabled child, what would you do?  Could you see yourself reaching a breaking point like Mr. Jones?  Frankly, I think he got those kids’ attention.  Though his expletive-laced rant has become a viral sensation across the web, if he had not used that tone would anyone have even cared or taken notice?  Would he have gotten the kids’ attention?  Did they even think he might go to jail for what he did?  And if he had not been a large man would they have even realized they were being confronted for their actions? 

Though I disagree with his overall actions, I applaud Mr. Jones motives.  He was doing right by his daughter for standing up for her, her abilities and her disabilities.  And for that I am proud he’s a fellow advocate for special people.

SportsAbility

I learned about a program a little too late to promote involvement for this year, but it is still worthy of mentioning in a blog about advocating for special people with disabilities.  The article I read in our local newspaper lead me to learn over the first weekend in October, the local City of Ocala’s Parks and Recreation Department partnered with the Florida Disabled Outdoors Association (FDOA) to hold SportsAbility.  For the past 20 years the FDOA helps to make leisure sports accessible for persons with disabilities from sit skiing to archery, wheelchair tennis to adaptive computers and many activities in between. 

Though it began simply as rehabilitative recreation it has evolved into something anyone with any disability can do.  One of their motto’s is “There are no barriers too great to overcome!”  The best part about it- it’s free for all who participate!  The FDOA Web site guarantees the 2011 dates will be posted soon, so I’ll be sure to check back to give readers a bit of a notice next year.

I applaud the FDOA for the work they are doing to involve everyone in all sorts of recreational activities, and I’m proud our cities is one of the annual locations.  That’s what I call advocating for special people!

The Day Mary Got Mad

All of the clients who attend ARC Marion are fascinating and unique individuals.  I would like to focus on one remarkable lady who is intellectually disabled and legally blind.  I’ve always heard that if you are lacking in one of your five senses, then all of your others are magnified.  I would definitely say that is the case with Mary.  Once you tell her your name, she can recognize your voice from across the room.  I’ve been told, she can often even recognize someone by their footsteps or their perfume as they approach her. 

Mary is also quite the independent individual.  She lives on her own in an apartment in the community and rides the bus, our city’s public transportation, to and from ARC Marion.  In fact, over the many years of her riding the bus, she made a friend named Thomas. He would help her get off of the bus and walk with her up the long driveway at ARC Marion and into the Adult Day Training program. 

But then one day, Thomas got a job. (see Tuesday’s blog).   He wasn’t on the bus any more to help Mary walk up the long driveway.   In fact, when Mary got off the bus that first day, staff members were horrified when they noticed her walking along the busy highway tapping her white and red cane as she walked down the side of the road.  As the first staff member approached her, he quickly learned that she didn’t simply make a wrong turn off of the bus.  She knew exactly what she was doing and was mad that Thomas wasn’t there any more to help her down the driveway…and some think people with disabilities don’t understand a lot. Ha!  Mary knew just what she could do to make a point.  She made her point alright.  Luckily she wasn’t injured and just gave everyone a scare.  In fact, as she learned just how dangerous her trick was, she was very upset that she had disappointed so many by her behavior.  Mary has vowed to never do something like that again to endanger herself or others, and we have promised to not make Mary mad anymore either.

Moving the Needle

When working daily with the developmentally disabled you see a wide array of successes and challenges.  We know there are some cases where an individual’s level of care and quality of life gets better, but to an outsider it may appear that no real success is occurring.  However, there are many examples individuals whose lives have changed dramatically.   Take Thomas as an example.

His parents started bringing him to the adult day training program at ARC Marion where he learned how to operate machinery, work with loud noises, and function under strict time constraints.  Essentially, he learned job skills that would allow him to work out in the community. 

At the same time, he decided he wanted to be more independent, so the staff at ARC Marion began helping Richard learn the concepts of mass transit.  Staff members assisted him in knowing how to ride public transportation to and from his home and ARC Marion.  Soon he was traveling by all by himself on the bus every day.  He also made a friend on the bus, another developmentally disabled client named Mary who was coming to ARC Marion as well.

Thomas began advancing pretty dramatically in the skills he was learning, so he started going out on enclave a few times a week.  Enclave is when clients at ARC Marion are taken into the community in groups to work in a business together for the day.  Thomas did so well in enclave that he decided he wanted to have a “real job.”  So he took the bus from his home to a job interview at Signature Brands, and he got the job!  In fact, he’s been working at Signature Brands several years now and only sees an ARC Marion Supported Employment job coach a few times a month.  Every day he rides public transportation from his home to his job and is functioning like any other member of society.

There are plenty of individuals with developmental and intellectual disabilities who won’t ever have a story like Thomas’s.  Their life’s successes may be more like learning to feed themselves or hold a pencil, finding a way to communicate with others or becoming toilet trained, or maybe taking just one step away from a wheelchair.  Their stories may not be as dramatic as Thomas’s is, but that doesn’t make their accomplishments any less valid.  However, when you do see a fantastic transformation in a person’s life like we’ve seen in Thomas’s we’re ecstatic to be a part of the process in moving the needle of his success.  Helping and watching change is advocacy.

The Wording Has Been Changed

One week ago today it became official.  The United States Congress has now passed legislation the removes the term “mental retardation” from all federal laws.  Now all existing education, health and labor laws will change the phrase “mentally retarded” to “an individual with an intellectual disability.”  Though it may seem a bit too politically correct, it is definitely the move we advocates for special people have been hoping for some time.  It’s just the first step in a long fight to change and eliminate the use of the word “retarded” in any type of derogatory fashion. 

The challenge for us now is to determine just how to use it.  We found ourselves being so overcome with enthusiasm about the ensuing change that we started referring to ourselves as assisting those with intellectual disabilities and leaving all other developmental disabilities out of the discussion.  While a good number of people served by agencies like ARC Marion are diagnosed with medical intellectual disabilities, there are just as many if not more diagnosed with developmental disabilities like cerebral palsy that may not affect intellectual capabilities at all.  In fact, many people with cerebral palsy have high IQs, but they may just not have the capability to tell you about it.

Regardless of the disability, the people served at ARC Marion and other facility-based service organizations are doing a wonderful job advocating for these truly precious, truly special people—all of them having intellectual and/or developmental disabilities in addition to countless other abilities.  It’s up to all of us to give them the tools to help them succeed, and Congress has taken a big step in that fight for success!

Manipulation and Advocacy

I met with a parent the other day who mentioned that her son with special needs had recently started school, and she had one of his therapists go with them to get him started.  It’s a good thing she did, because the goals that had been laid out for him by the previous program were all wrong.  The milestones and specifics of his support plan were so incorrect that all of them had to be changed.  If she had not had the foresight to bring his therapist with her, the school would have been trying to teach him a myriad of things he already knew how to do.  And with children with developmental and intellectual disabilities, the last thing you want to do is frustrate them or give in to their manipulation.  Yes, I said manipulation…

It’s pretty funny actually how smart people with developmental disabilities are, especially when others count them out.  A lot of times they know exactly what they want, and how to get it.  I was in a meeting recently with an individual most would consider severely disabled, crippled in a wheelchair with no real verbal skills.  The person was sitting in on the meeting even though it wasn’t for him.  The whole time he was making loud distracting noises, because no one was paying attention to him.  He wasn’t used to having someone else to be the center of attention, so he was going to do everything he could to draw that attention toward himself.  It was actually sort of humorous, because we all knew what was going on, and it was working nonetheless.

Regardless of the reasons why, whether we’ve been “manipulated” or are next of kin, we “normal” people in the lives of these special people must continue to be their advocates and their voices.  If we don’t stand up, ask the questions and offer the help who will?  It’s up to parents, guardians, caregivers, therapists, and friends to make a difference and get what they need when they need it, from the best education to a little bit of one-on-one attention.  That’s what makes us the best advocates we can be.

Facebook and a “Special Needs Child”

Facebook is a phenomenon I can’t quite put into words.  You can learn more than you ever wanted to about people.  I have to admit I’ve become a “Facebook stalker” at times, checking in on status updates of any of a number of my 700+ friends.  (That’s not to brag, but you get to know a lot of people when you’ve lived in multiple states.)  There are friends you keep up with more often than others, but it really is a great way to stay connected to those who have come in and out of your life over the years- especially those who don’t live anywhere near you.

The other day, a friend of mine’s status read: “I wish people understood what it was like raising a special needs child…judgmental poopyheads.”   Immediately after I checked that I “liked” her status, I had to chuckle.  She’s a college friend I haven’t seen in a dozen years, but I could hear her saying it in my head and knew she meant it straight from the heart. 

What caught me off guard was later in the day when another one of her friends commented on the status saying, “Every child is special no matter what.  Whether they need more love than others is just one of those things, but there is no such thing as a special needs child.” The statement was followed by the emoticon for a smiley face.   I was definitely not smiling as I blurted out (to myself) “truly spoken by a person who’s never walked a day in the shoes of a parent with a special needs child!”  OK, so I did a little judging of my own.

There are plenty of people out there who don’t get it.  I understand that.  There are folks who think they know what it’s like to live with someone who has greater needs than one could ever imagine, but I just don’t think they can truly comprehend what it means to have or care for one with “special needs.”  Let’s just consider some of those things we could classify as “more love” as this commenter suggests:  feeding your child for the rest of his or her life, changing diapers all of your child’s life, making travel arrangements to accommodate your child whether you’re going out of town or to the nearby grocery store, keeping up with medications and diets and environmental concerns all day everyday… I could go on. 

No, I’m not trying to throw some pity party here, because those same people with “special needs” are the most unique, fun-loving individuals who offer more unconditional love than any person should be entitled to receive.   We with family members who are fall in that category are more blessed for having them in our lives.  What makes them “special” is everything from their needs to their characteristics.  But to say that dealing with the unique needs of those with disabilities means their needs aren’t special is a poor choice of words, to say the least.

I simply bring it up in this forum to ask a simple favor: The next time you encounter a parent and his or her special needs child, you choose not to judge that person … and maybe without judging, you too can be silently advocating for special people.

Would You Move?

I recently read an article about a family touting the special education their autistic son was receiving in his new school.  The family had moved from another state (not mentioned in the article) to a city in Tennessee, and their son was receiving exemplary care and education in his new location.  His skill set had increased.  His communication had blossomed.  His bad behaviors due to boredom had decreased.  Though this family was moving to be closer to their extended family, it lead me to the question—if you knew that your child would receive better education, care and training in another city or even another state, would you be willing to move?

It’s a pretty tough question when you think of the logistics it would take to move, especially in today’s economic climate.  Finding a job, selling and buying or renting a new home, planning and executing the move would be just a few of the many things to consider.  However, if you knew that your developmentally or intellectually disabled child could go from coloring cartoons everyday in school to increasing vocabulary, reading and writing, and just developing his or her abilities in a public school, at no cost to you, would you consider it?  Furthermore would you not just think about it but do it?

It’s hard to picture the amount of love a parent can have for a child before you have children yourself.  I know I never realized the magnitude of the joy and sometimes pain felt by parents or the amount of unconditional love poured out by little children until I had a few of my own.  That’s why I think I can say without reservation that I would do whatever it takes to do the best by any one of my children.  If that meant my moving to help them better succeed in life, my answer is yes.  What’s yours?

Living United ARC Marion Style

DSCF0088-2As the 2010 United Way campaign gets underway in our community, the clients and staff at ARC Marion were proud to participate in the campaign kick-off yesterday that was a bit unorthodox.  Instead of the usual meeting of business leaders and agencies over breakfast or lunch with a speaker, announcement of the campaign goal, and some little takeaway that gets put on a desk or in a desk drawer, our local United Way decided to have kick-off flash mobs all over town every hour on the hour.  The one at our location was the largest, by far, with over 150 participating at Noon in front of the main campus.  What a site to see, clients waving and cheering with their white Live United T-shirts on.  When we told them just how many of their friends are helped by United Way each year right here at ARC Marion, they were even more excited. 

We hope that this campaign is one of the most successful yet for our local UW and their supported agencies.  We need it now more than ever, and so do so many others in our hurting community.  It’s time to give, ADVOCATE or volunteer on behalf of United Way!  Let’s all Live United…

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Vaccines… an opinion

My two-month-old baby had his first shots on Friday.  It was pretty emotional for me, since I knew I had a meeting to go to after his appointment.  I had completely forgotten that he was supposed to have them, and my babysitter was in the waiting room ready to take him home.  After he received one oral dose and was stuck in both legs, a total of three shots, he screamed a while, and then fell asleep like a champ…pretty much the reaction I was expecting.  I have to admit that I was a little uneasy about the whole thing until a few hours later when my meeting was over I saw that big beautiful smile of his.  He sure seems unfazed by it all now and is back to his joyous little self.

I’m sure the reason I cringed about the thought of his getting his first vaccinations was due in part to all of the reading I’ve been doing about parents with autistic children and their fight over vaccines.  I want to first say that I never really gave it a lot of thought.  My third son is now getting vaccinated just like his two older brothers did and will continue to be as needed, and I am more than grateful that I haven’t seen any autistic characteristics in any of my children.  So it was pretty easy for me to dismiss the anti-vaccine movement altogether.

I recall sitting in the waiting room of my OB-Gyn doctor when I was pregnant with my second child.  A friend who is a neurologist from Latin America was also expecting at the time, so we had a little while to catch up as we waited for the doctor who was at the hospital in a delivery.  I told her I had friends who were considering not vaccinating their son, and she spoke of medical conditions she had seen firsthand in third world countries that are immunized in the U.S.  I can distinctly remember her words saying “You see a child with rubella or an infant dying of pertussis, and you won’t think twice about not giving your baby shots.”  I agreed with her then as I still do today.

BUT, the way Jenny McCarthy gives her opinion about vaccines in the two books of hers I have read (yes, I’m starting the most recent book this week) seems to make sense to me.  Not every kid that is vaccinated would have reactions to the shots.  Only those children with weakened immune systems could be susceptible to anything harmful in the shots.  I don’t know how I feel about it totally, but here’s my own story about it.

My two-year-old went to the doctor right around his birthday and was scheduled to get vaccinated.  I don’t remember which one happens at two, but he was supposed to get it.  However, when the doctor looked in his ears, she said that he couldn’t get his shot that day.  He had a double ear infection, and needed to go on an antibiotic instead.  First of all, you have to understand that my son doesn’t show any symptoms of ear infections whatsoever.  This is now the second time we’ve had him at the doctor, only for her to tell us the same thing with his ears.  He must have an extremely high pain tolerance or something.  The doctor told me to come back to get his shots at another time, which I am ashamed to admit now three months later I have yet to do.  Then again, if he could potentially have chronic ear infections, which we don’t know anything about, could sick his ears just have protected him from something more harmful?

Another personal story- my sister, who I focus a lot about in these blogs -was hospitalized with pneumonia twice before she was two-years-old.  Since I’ve started questioning the whole vaccine and autism link myself, I had my mother check my sister’s shot history.  Yes, the vaccines were different 30 years ago, but there were enough similarities, I was at least interested.  Apparently, my sister’s shots occurred in between her two bouts with pneumonia.  That doesn’t prove a lot.  But what I do know is that her body was under attack during that time if she contracted pneumonia twice in an eight month time span, and she originally wasn’t diagnosed with autism like she is now…. I’m just saying…

While the jury is still out on the connections, and nearly everyone in the medical field will denounce a link between vaccines and autism, I will certainly hesitate in allowing a sick child to be immunized just in case.  And every time one of my kids gets his shots in the future, I will pray extra hard that he be protected against anything harmful that the vaccine is supposed to keep him from as well as anything harmful the shot could be giving him in the process… and that’s my opinion, as a mother, as sister and an advocate.

She has Another Book?

A few weeks ago, I alluded to the fact that I’m not much of a reader, but I have found that once a good book gets in your blood, the interest in more good books sort of just keeps flowing.  When my husband suggested we go browse the Clearance racks at our local bookstore after our anniversary dinner recently, I was actually up for the idea.  He loves to do it all the time, but I had always thought it was a horrible idea… much to my surprise, we had a blast!

During my journey of perusing the cookbooks, self-help stuff and stories about things I care nothing about, I happened upon ANOTHER Jenny McCarthy book—this one called Mother Warriors: A Nation of Parents Healing Autism Against All Odds.  It heralds the stories about the mothers (and one father) who have been champions for their children in bringing them through the autism spectrum.  When I saw that this copyright was in 2008 I realized I was behind the times on these books by Jenny.  I had remembered hearing about her writing a book about her son with autism a while ago, thus why I was interested in the first book.   But I didn’t recall hearing about any other books.  I’m not home during the day and don’t stay up to watch late night TV, so I had missed her promotional visits to the talk show scene every time, apparently dozens of times.

When I opened this book, it was yet again another page turner that I just couldn’t put down.  It was fascinating to read all of the personal stories from people she had met along this journey of “healing” her son from autism: the people who were defiant against her, those who refused to believe, and those who shared similar stories about their quest to spread the word about what is working for these kids.

The most interesting story to me was about Katie and her autistic son, Christian.  Katie’s parents, Bob and Suzanne Wright, founded the organization Autism SpeaksI’ve mentioned that group in this blog before, because that puzzle piece symbol has become iconic for anyone working with the disabled.  The way they’ve been able to spread worldwide awareness for the intellectual disability known as autism with that one emblem in just five years is something we all seek to do as advocates.  But it was fascinating to hear how the group that uses Katie’s son as their original poster child does not really embrace the ideas that she now holds dear as to the causes and healing methods that are working for her son.   In fact, they were adamantly opposed to all of the views regarding diet, B12 shots, yeast cleanses and other treatments , instead focusing the majority of their attention and dollars toward researching the genetics of the disorder or what I call non-environmental factors or scientific causes for the disease.  They wanted to denounce any hint that vaccines could have potential for harm.  They wanted to discredit any of the successes parents were having across the country in helping their kids off the autism spectrum.  The organization we’ve all praised for the awareness they’ve brought to this cause is in fact not listening to many of the parents needing to receive the most from them. 

I never knew this story.  But then again, we don’t tend to question organizations that seem to have all the right motives and intentions on the outside. (I have other nationally recognized charities I question as well, but that’s for another soap box for another day.)  However, with so many parents speaking the same story with many of the same successes, it seems that someone, somewhere with some dollars to put behind it has to start listening and paying attention…they are one voice speaking pretty boldly, and their champion bringing it to light is one former Playboy pin up named Jenny McCarthy.  Someone you might consider the unlikeliest of candidates is walking the walk and talking the talk in the fight to heal autism, and that makes her a wonderful advocate for these special people!

**Note, I now know that she has yet another book that came out just this year.  When I read it, you’ll be the first to know.

Fighting for Breakthroughs in Autism

This weekend was the start of college football.  Growing up in the south, I have loved this time of year since I wore my first Tennessee Volunteers cheerleading outfit as a two-year-old.  I like all sorts of sports, but there’s just something special about college football for me.

There were a few games over Labor Day weekend that were interesting.  An overtime win or two … games played on neutral fields that were major NFL stadiums in Dallas and Maryland… wins for mine and my husband’s favorite teams (which are different by the way).  But the thing that I remember the most of this weekend was a TV commercial.

Traditionally during college games, each of the two universities represented on the field has a promotional commercial about their school.  Working in public relations most of my professional career as well as working in PR for my graduate school, I’m always interested in the campaigns of the respective colleges.  I’m never really impressed but interested nonetheless.  One commercial this year was different.  It was griping.  It was heart wrenching.  It had nothing to do with football.

During the Notre Dame vs. Purdue game, my husband all of a sudden said, “there’s something on TV about autism.”  I had stepped into the kitchen and immediately perked up as I walked to the television.  He rewound the live TV segment (thank goodness for DVRs) and I watched Notre Dame’s campaign entitled “What Would You Fight For? Fighting for Breakthroughs in Autism.”   The commercial showed how their students at Notre Dame are using robots to teach children with autism about emotions and other life lessons.  It’s working!  I was impressed by the campaign but frankly more impressed by the research they are doing.  It makes so much sense, and it is working!

 As Notre Dame students and others continue to fight for autistic children and those with special needs, I applaud them for their efforts and for the advocacy.  They are truly helping make a difference in the lives of countless numbers of special people now and for years to come.

Diets Do Matter

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

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

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

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

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

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

I Read a Book

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

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

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

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

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

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

My Sister and Autism

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

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

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

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

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

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

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

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

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

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

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

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

I Cheated

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

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

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

The Point Tours

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

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

Golf for Scholarships

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

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

Guest Bloggers Welcome

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

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

How are We Doing?

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

Dancing for Joy

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

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

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

Florida Special Education Changes

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

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

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

Our Newsletter

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

The Point!

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

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

We are advocates… do you get our point?

Glee and Disabilities

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

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

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

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

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

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

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

Portraying Disabilities in Entertainment

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

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

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

Old School TV: Entertaining Despite Disabilities

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

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

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

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

A Seven Year Summary

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

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

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

Sometimes They Get It Right

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

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

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

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

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

My Wedding Day

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

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

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

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

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

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

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

Getting Older

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

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

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

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

Horrible News

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

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

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

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

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

Scholarships for Hope

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

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

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

Tears for Tiers

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

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

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

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

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

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

A Simple Thank You

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

Maureen Hamilton on her new Harley

Maureen Hamilton on her new Harley

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

And Congratulations are in order for Mrs. Maureen Hamilton, the winner of the 2010 Street Glide motorcycle.  In the nine years of Hog for Hope, this is only the second time that the winner was present at the BBQ when his/her name was called.  We are overjoyed for her, and we know that she’s going to have a great time on that Harley for years to come!

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

Special Summer Vacations

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

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

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

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

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

Summer Camps Bring J.O.Y.

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

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

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

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

Kids of Rock

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

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

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

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

ARC Marion and the Alzheimer’s and Down Syndrome Link

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

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

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

Alzheimers and Down Syndrome

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

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

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

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

Hog for Hope is Quickly Approaching

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

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

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

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

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

On the National Day of Prayer…

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

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

My Special Friends and Their Special Daughter

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

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

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

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

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

Photo Courtesy of Carrie Workman Photography
Photo Courtesy of Carrie Workman Photography

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

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

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

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

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

We’re in a “Niche”

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

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

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

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

Special Olympic Equestrians

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

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

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

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

When Our News Makes the News

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

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

Does It Make Sense?

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

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

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

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

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

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

Yes, It Still Happens

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

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

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

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

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

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

…Or Pin Them Down…

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

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

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

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

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

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

Why Hold Them Back?

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

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

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

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

Dream Catchers

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

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

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

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

BriansLeague.org

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

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

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

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

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

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

Another Reason to be Proud of My Alma Mater

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

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

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

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

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

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

Autism Awareness

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Photo ESPN.com and Getty Images

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

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

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

However, EIP only reaches 100 children a year in our community with over 42,000 school-aged children, and EIP is the only program of its kind in Marion County.  Granted, making a difference in those children’s lives, even if only just a few, has impacted the greater good for sure, but as more and more children are diagnosed, the need for specialized education for these unique children will only increase.  That’s why educating the public and working toward inclusion are so vitally important.  With more and more children receiving the diagnosis, even more people in communities everywhere will have to realize just what that means for society and for the education of these special children. d_200801_logo

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

We Aren’t Fooling

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

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

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

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

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

Cuts, Cuts and More Cuts

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

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

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

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

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

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

What Wasn’t in the Healthcare Bill that Could Have Been

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

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

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

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

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

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

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

Too Good to be True

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

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

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

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

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

Early Intervention is Key

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

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

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

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

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

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

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

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

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

Polarizing Advocate

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

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

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

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

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

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

Balancing a Budget on the Backs of the Disabled

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

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

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

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

To Whom It May Concern:

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

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

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

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

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

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

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

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

Have You Seen Them?

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

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

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

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

Smile Contest

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

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

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Overcoming Limitations

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

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

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

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

Let Them Win Sometimes

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

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

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

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

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

Is There a New Trend in Children’s TV Programming?

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

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

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

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

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

We’re Going to Do It Too

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

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

Helping Us Help Others

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 4th 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 View: I Agree and Disagree

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.

Politically Incorrect

 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.