According to the Agency for Persons with Disabilities’ (APD) website, APD provides services each month to approximately 35,000 Floridians with autism, mental retardation, spina bifida, cerebral palsy, Prader-Willi syndrome, and children aged 3 to 5 who are at high risk of being diagnosed with a developmental disability. There are also approximately 18,000 children and adults with developmental disabilities who are still waiting for services. Some have been waiting for more than five years.

Some are waiting for help to perform the activities of daily living, others are waiting for therapy services to learn mobility skills, some are waiting for a safe place to live, others are waiting for someone to support their participation in community life. All of them are waiting for Medicaid Waiver Services from APD. Some of them have been waiting for five years or more, and many individuals are 45 years old and older. This last group now depends entirely on their elderly parents for their needs. Many parents themselves now need assistance with daily living tasks, and they can no longer care for their loved ones who are disabled.

To understand the immediate and long-term needs of individuals with developmental disabilities on the wait list, the Council commissioned a survey of individuals on the APD wait list who are living in their own home or their family home. They found that:

• 19.3% of individuals with developmental disabilities under age 21 and 48.2% of individuals with developmental disabilities age 21 and older received no services at the time of the survey.

• Individuals with developmental disabilities under age 21 most often needed behavioral analysis (44.7%), speech therapy (41.4%), and occupational therapy (38.3%).

• Individuals with developmental disabilities age 21 and older most often needed transportation (46.0%), in-home supports (36.3%), speech therapy (29.5%), and occupational therapy (29.0%).

• 70.3% of individuals with developmental disabilities under age 21 reported receiving services through their school, the most common source of services for this age group. These individuals will lose their school-based services by age 22.

The Council is very concerned abut the health safety and welfare of individuals on the wait list, and their families, as they are at increasing risk of harm the longer they remain on the wait list. Each day, week, month, and year that passes places individuals with developmental disabilities at increased risk for development of secondary disabilities and related health problems. Without needed assistance such as therapy, training and nursing, any individual with a developmental disability will become more dependent on others for care and risk the development of secondary complications such as respiratory disease or reduced mobility. These individuals are being denied services and supports that can address the potentially devastating effects of disability.

The Council is urging everyone affected by the waitlist - individuals with developmental disabilities, family members, guardians, service providers, advocates and state agency staff - to develop strategies and work together now, and during the 2010 Legislative Session, to find a way to eliminate the waitlist.