However, today we had the chance to really start speaking in a unique “kitchen table” type forum about integrating those with developmental disabilities into the very fabric of our community.  From the income round table to the health forum, we were present and vocal.  I happened to be in the education meeting.

It’s been a couple of years since I blogged about an inclusion model in education, but today, in a room filled with bank leaders, school principals, community advocates, university educators, and candidates for school superintendent, I took the opportunity to say that I would like our community’s education system to be one of inclusion… that the children in our school district who would be labeled as being “profoundly disabled” (one candidate’s words) would attend schools with other children in Marion County.  Currently, there is one specialized school housing all of those students.

Granted, we also learned today that our county’s public schools have a lot of challenges, one of which is the geographical land mass we possess in addition to having over 40,000 students in which to educate.  That’s huge. I was just appreciative of the fact that we could start the conversation in a room of educated, advocating, community movers and shakers.  That conversation that while we isolate and segregate this very special population of young people, we are in turn keeping everyone else from being educated about them.  What appears to be a “perfect” situation to keep them all in one place is in fact creating a sense of fear and possibly even bullying among others who aren’t familiar with those who are unlike them- yet make up at least 2% of the population of the world in which they live.

It’s just the beginning, but in order for change to occur, there has to be a starting point.  That start was today… just another way we are advocating for special people.

I have used this blog to be like an online journal for a sibling of a special needs individual, so allow me to expound on those thoughts a bit.  I live 500 miles away from my parents and family.  I haven’t seen my special sister in five months, and that absence screams inside of me at times so loudly I can hardly stand it.  I have chosen a profession that surrounds me with special people much like my sister, but they aren’t her.  There is a difference, though my advocacy is pretty much the same.  However, when I hear of stories like Delaware basketball star, Elena Della Donne, or reality star, Ruby Gettinger, living their lives for their siblings with special needs, a bit of guilt sets in… I’m doing this great work, desiring for ARC Marion to be the go-to resource for those with special needs in our community, but at the end of the day, I’m still doing it for people like my sister… not actually my sister.

There’s something unique about the sibling of those with special needs.  We take on so much more than others understand.  Everything I have ever achieved in life was because I pushed myself hard- knowing I was the only one in my immediate family who would ever be able to do the things I did.  Sounds a little bit like Elena’s story, huh?  And I cared for my sister a lot growing up as a child.  I didn’t internalize it as much as Ruby did, and I have the opportunity to share more because I am away from my family, but the stories still seem pretty similar.

There is a passion burning inside of siblings of special needs individuals that if it could be bottled and sold, any CEO would want that passion imparted to his or her employees. In fact,I am not alone in my passion.  There’s a whole network of sibling advocates out there. On April 10 is a webinar devoted directly to bringing brothers and sisters of people with disabilities together.  I just registered to participate.  Maybe it’s a new step on this journey I’m taking?  Maybe it’s a launching place for me to start blogging again?  Maybe it will be just what I need to learn how to actually bottle up this passion to help give it to someone else?  What I know for sure, it will be a great time for me to share with other siblings who are doing just what I am… advocating for special people… we just call them our brothers and sisters, too.

Last year, this same group helped beautify another one of our group homes in the community.  We love partnerships like this with local community groups reaching out and helping us.  This is yet another example of how anyone can get involved and help change the lives of ARC Marion’s clients.

If you or your organization would like to donate some of your time and service toward enriching our clients’ lives, please contact us at anytime.  You never know what a few hours of your work and energy can do.  Thanks, Ivy Circle Garden Club for truly being advocates for the special people at ARC Marion!

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?

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 this 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!

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!

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.

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.

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!