More than 20,000 Floridians with intellectual and developmental disabilities are stuck on a waiting list to receive Medicaid benefits for critical services such as personal care, job training and transportation. About 500 of them have recently graduated from high school. Normally a time of new beginnings — college, job, independence — graduation is the onset of uncertainty for families with special needs kids, and a reminder to the rest of us of the importance of a stronger safety net that lets far fewer people slip through the cracks.
The Tampa Bay Times' Donna Winchester recently profiled Kelly Krohel, a severely autistic woman who graduated last month from Nina Harris Exceptional Student Education Center. At 22, she cannot drive or care for herself and has limited speech. But she has a flair for art and is headed for a day program at PARC in St. Petersburg, which serves adults with developmental disabilities. She can also continue receiving therapies that will help her be as independent as possible — all thanks to her Medicaid waiver.
Kelly, along with her aging caregiver-parents, are an example — a fortunate one — of what happens to developmentally disabled kids and those on the autism spectrum when they leave the school system. Many are enrolled in Medicaid as children and receive services along the way. But they "age out" at 22, and even if they qualify for Medicaid for health care as adults, they need what's called a Home and Community Based Services Waiver to continue receiving occupational, physical and speech therapies, nursing care, respite care, dietary assistance, transportation and more. The waiver also helps pay for resources such as PARC, which offers programs in the arts, horticulture, culinary and — perhaps most important — employment support and training.
What would happen to these individuals and their families without that help? Nationally, 1 in 5 families with a special needs child report one parent having to quit a job to provide full-time caregiving. A quarter of such caregivers are over age 60. Helping people with these unique disabilities to live independently is the only sustainable public policy. It's also in the public interest — institutionalizing the disabled is enormously more expensive — and morally right. Yet Medicaid funding for these programs has never kept pace with demand, and the money is often cut.
The 2017-18 state budget signed into law by Gov. Rick Scott offers modest hope. It provides $3.7 million to take 340 people off the waiver waiting list, but at that rate it would take decades to significantly reduce the waiting list. The money prioritizes critical cases, such as disabled people whose caregiver is critically ill. It won't stretch to recent high school graduates on the waiting list. There's also a nearly $16 million boost in funding for providers, who are being paid at less than 2003 levels. That's making it extremely difficult to recruit and retain workers to provide the services. The money is non-recurring though, which means the hole will need to be filled again next year. Another bright spot is transportation. The budget includes a $5 million increase to a transportation program for disadvantaged people, as well as $3.5 million for a transportation grant and $100,000 for a transportation study and task force for individuals with development disabilities, who consistently list transportation as a top need.
The cost of Kelly Krohel's future care is projected to run $120,000 a year. That would be impossible for most Florida families to cover themselves without the assistance of Medicaid. Developmentally and intellectually disabled adults can lead full, productive lives, but they need help. Enabling them to access engaging programs and job training, helping their parents maintain jobs and keeping them out of institutions is in everyone's — including the public's — best interest.