We are a family. A family in some ways like many living in Florida; but a family faced with circumstances that most of our community can’t begin to comprehend.
My name is Tracey. I have a wonderful husband who is devoted to his family and is an amazing father. We have two sweet, beautiful, funny, and engaging sons, Dalton and Jake. Dalton was born in 2002. He was always a sweet child. As he grew he became a little quirky, but sweet none-the-less. Our pediatrician was slightly alarmed regarding his lack of some developmental milestones, most notably language. After working with Early Steps and being in quite a of bit of denial, Dalton at 2 years old was diagnosed with autism. At the age of 2 ½ years, we applied for APD and was put on a waiting list for services, which at the time we were told would average 7 years.
At the time of Dalton’s diagnosis, I was pregnant with our Jake. Most of the same story holds true for our journey with his diagnosis, except this time we were more prepared and alert. At a year old, we realized that we were probably heading down this path. As some of his developmental milestones failed to materialize, at the age of 2 Jake was diagnosed with autism and he too was put on the APD waiting list for services.
As the years passed and a new system of supplying services took hold in the state, Dalton and Jake were moved to the lowest priority category (7) on the waitlist and as each year passes, we are told there is no timeline for when our family will receive any type of supports from the program. So far, that wait has been 12 years for Dalton and 9 for Jake.
The system in Florida has unfortunately failed our family. Due to the loopholes implemented in Florida’s Autism Insurance Reform Law, self-insured programs do not have to cover autism related services. Our insurance is through such a plan, so proper therapies like speech therapy and applied behavior analysis are not covered. We have been paying out-of-pocket for these services with a tremendous amount of help from my parents who have dipped into their retirement savings to help support therapies for their grandsons. That out-of-pocket expense has been easily at least $40,000 to date. Dalton is currently 14 and Jake is 11.
My parents have been amazing not only in helping us financially, but have been there to help educate and watch our children. We have taken our children out of public school, because the local district is poorly equipped to educate children with the severity of disabilities like our boys. Jake receives full-time ABA based private education which is only partially funded through the McKay program and Dalton goes part-time to the same school and is home-schooled as well. We are currently spending about $13,000 a year for their ABA based service education.
Dalton has grown in his language but Jake is non-verbal. We have provided him with an iPad and a communication program which he is learning to use by working with us, school, and his own determination. What he really needs is a speech therapist who can teach him even more. Again, our insurance will not pay for such services and we are placed in a situation of having to find personal funding for speech services.
As my children age, so do we. My husband and I are 50. We have nothing saved for retirement. I suffer from a long-term auto-immune disorder that will eventually lead to my own disabilities. My youngest has epilepsy, which is currently controlled. We are worried about providing them with the necessary community based services that they need as they get older. Services which will help them have a more fulfilling and happier life.
I could continue with the financial and personal toll the APD waitlist has had on our family and the impact I see towards our children’s futures, but it is simple. All families who care for the developmentally disabled need services to help them find the strength to deal with the day-to-day challenges. These service supports help lift burdens and provide better outcomes to ensure successful families. All individuals impacted by developmental disabilities deserve a bright future as fully engaged participants in their communities. Our family and our sons are no different. The state of Florida should be the benchmark of services for the developmentally disabled. Florida has pushed these people and their families to the margins of society. We are forgotten and the cost to families and the futures of men and women are being discarded daily by the lack of compassion and foresight. Florida clings to the medieval idea that a society should not prioritize the care of the most inn ocent and vulnerable. The notion that families and people should be placed in some sort of purgatory until a higher power gives a reprieve is staggering and not what the citizens of Florida would ever knowingly agree.