My Son Has Severe Physical and Developmental Disabilities. I Am His Voice and His Advocate.

By Tabatha H., Flagler County

I came to be the caregiver for a young man with severe physical and developmental disabilities around 10 years ago. He was about 15 years old when he came to be under my care as my foster child. Although I am not his biological mother, I feel comfortable referring to him as my son because I care deeply for him. My son was born with cerebral palsy, along with intellectual and developmental disabilities. The physical limitations caused by cerebral palsy vary from person to person, but in my son’s case, he is wheelchair bound and is unable to speak for himself. He receives feedings through a gastronomy tube as a result, and the only thing that he is able to take by mouth is water. After turning 18, many foster children with his medical conditions end up having to be cared for in facilities, but I did not want that for him. We were family by that point, so I decided to pursue custody as his legal guardian. He is now 25 years old and I officially became his legal guardian about 5 years ago.

Navigating the health care system for an individual with physical and developmental disabilities is a complicated process, to say the least. My son has insurance through Medicaid, but still, going to the doctor or the dentist for him is a different experience than it is for others without his disabilities. Because of the severity of my son’s disabilities, he is not able to tell me what he’s feeling, like when he is in any sort of pain, so I have to be his voice and his advocate in every way possible. One time, before the COVID-19 pandemic, I took him to the doctor to find out why he would sometimes stop breathing while sleeping and to get a referral to see a pulmonologist. So, of course his doctor did blood work to make sure nothing else was going on. Within a couple of days, I was told to come back for a follow up visit. The test results apparently indicated that my son had a high A1C level and we were told that he needed to see a specialist for possibly being diabetic. This is when everything spiraled out of control. We were then referred to several other specialists, including a podiatrist. We finally saw a hematologist who eventually informed me that my son is diabetic. This did not sit too well with me and I voiced my concerns to his doctor during every visit. He was not hearing me and instead, simply kept referring us to more and more specialists.

Throughout the years that I took care of my son prior to his 18th birthday, his pediatrician never communicated concerns about him being diabetic. However, we had to change his doctor to a general practitioner after he turned 18, and that’s when the concerns began. I was constantly on top of my son’s health and his care, so how was he all of a sudden going to be diagnosed with diabetes? Anyway, the doctor put him on medication due to the diagnosis, and that’s when my son started to experience bad reactions to the medication. It was making him really sick, and I expressed my concerns about the medication to his doctors constantly. I eventually had to take my son to the Emergency Room, where the E.R. doctor informed me that my son is pre-diabetic -- not diabetic-- and that he should not be on the diabetes medication he was taking. The E.R. doctor encouraged me to continue to advocate for my son when something doesn’t add up because I know him better than anybody. Even if people don’t listen, he encouraged me to keep advocating for him the way I had done up to that point.

I want to particularly emphasize the challenges I’ve experienced trying to access the appropriate oral health services for my son. The issues really started after he turned 18. Up until that point, my son had what is referred to as “straight Medicaid,” and we hadn’t really experienced major problems getting him the services he needed under that coverage. For dental care, I had been taking him to the Tacachale Dental Clinic in Gainesville, where the providers and facility are equipped to serve an individual with his needs. We live in Palm Coast, which is an hour and a half from Gainesville. It may be a bit far, but I don’t mind the drive as long as he is getting the services that he needs.

Prior to my son turning 18, I already had to start getting his insurance changes situated because his Medicaid coverage would be different after that point. For example, after turning 18, his services would not be covered by every provider. Rather, he would now have to be assigned to the specific health care professional who would be seeing him. We ended up switching his insurance to the one that the Centers for Medicare and Medicaid Services and the Agency for Persons with Disabilities determined was the best one for his needs. After his insurance changed, I continued to take him to the Tacachale Dental Clinic for his dental care until we were told the unexpected news that the clinic would no longer accept the insurance plan my son had. When this happened, I had to explore other dental provider options. I started by contacting the providers in my area, as well as providers listed in his insurance plan. With each provider I spoke to, I clearly informed them of his disabilities and needs. I explained that he is wheelchair bound, has cerebral palsy and a developmental disability, and is unable to open his mouth on his own. Various times, different dental offices scheduled him for the appointment saying that they could provide him the services, but when we arrived, they turned us away. They explained that they did not have the equipment to provide the services he needed. This was particularly frustrating, especially because I made it a point to inform them of his needs before taking him. It was even more frustrating on other occasions when I drove him to providers who were farther away after telling me they would see him, only to turn us away again due to not having the proper equipment to serve him. I never would have imagined the extent of the shortage of dental providers equipped to work with adults with the physical and developmental disabilities my son has.

Given the various issues I experienced finding a dental provider who could see my son, I ended up switching to the insurance plan that the Tacachale Dental Clinic would accept. It took a few months to get it situated and active. When it was finally active, the COVID pandemic unfortunately started and the situation was complicated further. To clarify, Tacachale is a community of Floridians with developmental disabilities, and the Tacachale Dental Clinic primarily services members of the Tacachale community. Families like mine benefited from the services the clinic provided because it was open to the public and had the providers and equipment to serve adults with the challenges my son faces. However, everything changed when the pandemic started because the clinic was closed to the public. Until further notice, it would only service its community members. Since my son is not a Tacachale community member, I have not been able to take him there for over a year now. I find myself continuously asking the clinic when they will be open to the public again, but I keep getting told that they are waiting for approval from Tallahassee. This has caused me to have to search for other providers, but once again, I’ve faced the issues I faced previously. I haven’t been able to find a provider who is equipped to work with my son.

Oral health is so important. Routine dental care and teeth cleanings are essential for preventive care and overall health. Thus, the issues I’ve experienced trying to access the appropriate dental services for my son are unacceptable. It is unbelievable to me that it has been this difficult in the state of Florida for someone like him-- someone who is not able to speak for himself or even function on his own-- to get the dental services he needs. For these reasons, things need to change in Florida. One of the things that needs to change is that dental providers should not tell the public that they serve physically and developmentally disabled adults if they don’t really serve them. I understand that specialization and equipment are needed to provide services to an adult with the conditions my son has. However, it would be so helpful if they could just clearly tell me that they cannot provide services to him when I am scheduling the appointment over the phone, as opposed to turning me away after driving long distances to those appointments. The second recommendation I have is that the following question needs to be answered: Where are the providers who can service adults with the needs my son has? I am in disbelief that the only provider I have been able to find that can do so is located an hour and a half away from me, and that I have not been able to find an alternative after that clinic was closed to the public. There are simply not enough dental providers equipped to work with adults with the conditions my son has. This is so troubling and needs to change.

Taking care of my son is hard work, but I wouldn’t change it for the world. He isn’t able to take care of himself, so I am proud to be his voice and his advocate. I am prepared to fight hard for the care that he needs. I don’t know how to fix this issue, but I have a clue. I also know that there are many others throughout Florida experiencing very similar challenges finding the care their adult children need. I urge the state’s lawmakers to talk to us and listen to us. Maybe in doing so, we can find a solution to this issue together.