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!

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!

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!