Personal Stories
NICK:
After attending private school for most of his life, 21-year-old Nick has been waiting more than five years to receive community services for Down Syndrome. Anything he does, including his speech therapy and behavior modification therapy, is paid out of pocket by his family - who also has other children for which they provide primary care.
Currently, Nick is enrolled at North Florida School (NFS), which he attends because of the McKay Scholarship. Even though NFS provides excellent day care and primary education, Nick’s situation requires extra attention and focus in the areas of adult life preparation, job coaching and employee placement.
With his mother and father working full-time jobs just to keep the family financially afloat, Nick’s family does not have the time or resources available to obtain job-training skills within the community they live in. Transportation to services, a pre-funded organization that provides services, as well as the other programs and benefits that Nick needs and his family wants for him are rarely offered to Nick. The constant use of these services nearly drives the family bankrupt.
Love is abounded in the Revel family, which has helped develop Nick’s fondness of dating. He currently has a girlfriend, Kelsey (also featured on this site), and the two have helped each other develop positive communication skills and interpersonal relationship-building skills. Even though Nick has come along way during his 21 years, he still needs help in dealing with the emotions of relationships, including friends, family and dating.
"The ability to adapt to the community he lives in and interact with people is something Nick craves constantly," said his mother, Debbie. "Kelsey and he are a positive influence on each other, and I’m incredibly thankful for that, but also recognize that Nick needs as much education and training as possible to adequately prepare him for adult life."
The support Nick receives from his family is what has kept him going, as each and every member of Nick’s immediate family tries to keep him as happy, educated and integrated in the community as possible. However, the daily grind of simply maintaining an entire family while also handling the emotional, financial and intellectual struggles that they face with Nick’s challenges can make for a hard week - or for a hard five years.
"People with Down Syndrome have great potential and have many gifts and talents to share with the community," said Debbie. "Resources are available that can benefit and make a difference in their lives, and it’s necessary to benefit from these successful programs and services. As parents we want our children to reach their hopes and dreams and live happy and fulfilled lives!"
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KELSEY:
If a child with Down Sydrome has lived with his or her parents throughout his or her entire life, when the parents pass away, the child (now adult) has no where to go. For these reasons, the Adams family attempted to obtain community services to help Kelsey reach her goals, but since that happened four years ago, Kelsey has been waiting ever since. On that list is where she has remained, along with the other 15,648 people who desire the same opportunities as she.
Although her life is, in many ways, like anyone else’s, there is one thing that Kelsey desires that many of us take for granted - living independently and being an active member of her community. If the resources are in place to support Kelsey in her personal goals, like many other college students and young adults, she will have the privilege of taking care of her self, contributing to her community, and most importantly, obtaining her most prized personal goal: independence.
"While Kelsey is perfectly capable of learning things, she needs repetition to comprehend," said her mother, Susan. "Guidance with both managing money and navigating transportation are crucial for her independence. These services would not act as Velcro to her for the rest of her life, rather they would provide the much needed and deserved support along the way."
Even though Kelsey is one of a few lucky individuals who are a part of the On Campus Transition Program at the University of North Florida, her and her family express ongoing concern for Kelsey’s personal success, and for people with Down Syndrome. Providing educational services, along with job training, job coaching and employee placement has cost the family more money than imaginable, nearly driving them to remove her from many opportunities because of cost.
Graduating from Robert E. Lee High School in 2007, 20-year-old Kelsey has excelled at the University of North Florida. Focusing on adult-life preparation and interpersonal relationships, as well as taking classes on art and education, Kelsey is enjoying her college experience - but needs more to be able to truly succeed at her personal goals throughout her adult life.
The likelihood of Kelsey receiving the much needed services from the community she lives in is slim to none - and there is nothing that has been done to help her, and the 15,648 other people with developmental disabilities, overcome these hurdles and give them the tools needed to be the productive, contributing members of society that they are determined to become.
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SCOTT:
With a retired mother caring for him with only her fixed income, Scott is missing many opportunitiesthat he was previously afforded to live a self-fulfilled, productive life.
"I’m flabbergasted at this situation in Florida; these individuals are being treated like second-class people," said Scott’s mother, Mary. "I try to keep life as balanced as possible for him, given our financial situation and relocation, but it keeps getting harder and harder to immerse him in the community we live in because we have to wait for community services through the Arc - and we’ve been waiting for a while now."
Everyday, Scott conducts his usual chores, typically trying to find things to fill his day. With a love of bowling, Scott goes every Saturday - costing $5 per visit - yet even that has to be budgeted for every month. Not to mention transportation. Even the simplest things like going to get ice cream is a stretch, as it all has to come out of his mother’s very slim budget.
Scott loves his cartoons and StarTrek, but a life spent in front of the television because of the lack of access to community organizations is deplorable. Scott’s mother has tried to place him in a vocational rehab program, but so far the job hunt for Scott has been rather difficult. Having worked at a drug store and McDonald’s back in California, Scott has the employment experience, but does not have the proper job coaching and supervision that he was previously offered. Likewise, Bradford County is missing out on additional tax revenue by not employing Scott in the community.
"Thankfully we have family here for emotional support. There are thousands of individuals with developmental disabilities out there who don’t have family - I have no idea how they cope," said Mary. "If you just give them a chance, they can do amazing things!"
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