GRATITUDE

Navigating through the world of disabilities

The other day I received a phone call from a parent who told me she had applied for Social Security. Her son, who has Down Syndrome, had been receiving SSI (Supplemental Security Income) but after she applied for Social Security, she learned he would no longer be eligible for SSI, a federal program that helps people with disabilities. This mother was worried about losing her son’s Medicaid healthcare coverage. Naturally, she was desperate to know exactly how this transition would affect his services. I didn’t have a clue what to tell her.

I had the same thing happen a few years earlier, but my support coordinator resolved it without my needing to get involved. Initially, I suggested this mom call her Support Coordinator to help answer these questions. She said she’d been trying to reach him but he wasn’t answering any of her calls! I sympathized and as soon as I hung up the phone, it occurred to me how, over the years, I had never had to worry about how my daughter would receive services. In my case, everything always seemed to fall into place.

When Jessica was first diagnosed with Cerebral Palsy and severe developmental delays, we were told she would need intensive therapy. My husband had excellent medical insurance coverage through his employer, and if we had needed it, our families would have offered financial support. At two years of age, Jessica started occupational, speech, and physical therapy at Easter Seals. It was the first on a long list of places I would take her. At three, she attended an early intervention program in a public school. By the time she was five, she was back at Easter Seals, attending their elementary program. Over the next fifteen years, I sent her to thirteen different schools. I was fortunate because every time I faced a new decision about programs, wanted to switch therapists

or find a different specialist, my network of friends pointed me in the right direction.

The one battle I struggled with was dealing with my own inner demons. The challenge that remained insurmountable was my mistaken belief that I could make Jessica be ‘normal.’ I fought (mightily) to accept she was permanently disabled. Laser-focused on ‘fixing’ her, I sought out therapists, and educational programs, determined to cure what was irreversible. This was long before I accepted the fact Jessica did not need changing.

Looking back, I recognize how lucky I was – I had the means to find private programs and did not have to struggle to find the most suitable ones for my child. Although Jessica wasn’t eligible for Medicaid coverage or the Med waiver program until she turned eighteen, we used our family medical insurance to fund all her therapies. I applied for scholarships to send her to private schools for children with disabilities. When Jessica turned seventeen, a representative from APD - the Agency for Persons with Disabilities, contacted me. His name-Joseph Perry. He met me at my job and helped fill out the paperwork to enroll Jessica in the Florida Medicaid waiver program. I didn’t know what I was doing or what kinds of programs were out there for people who were becoming adults, but Mr. Perry offered guidance about the plans designed to help permanently disabled adults. From that point on, it seemed easy to navigate the challenges of helping a child with a disability. Jessica started receiving Medicaid and SSI benefits that covered all her medical issues. ADP assigned a Support Coordinator.  At age twenty-one, Jessica ‘graduated’ with a Special Diploma. What happened next was pure magic. There was an opening at an Adult Day Training program called Community Habilitation Center, which has since been renamed the WOW Center. It’s hard to believe that Jessica has attended for the last seventeen years.

But what I’m most grateful for is how I didn’t have to think about what to do when I retired and learned Jessica would no longer be receiving SSI benefits. Several years ago, when my previous support coordinator retired, I had to choose another provider. I researched all of the forty providers and found the top-rated one, Unike Support Services. When I called and spoke to the founder, Monica Gomez, she told me, unfortunately, they were filled to capacity. Hours later, she called back. A client had suddenly passed away. They could take Jessica.

Like the desperate mother who called to ask me for help, my situation was the same but different. When I applied for SSA and learned that Jessica would no longer be eligible for SSI, all I had to do was pick up the phone and call Unike.

Monica’s son, Rene, reassured me that Jessica wasn’t in danger of losing any of her funding. He requested I send him my documents. It was the smoothest transition yet.