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It's Time to Address Florida's Medicaid Waitlist

In her mid-50s with debilitating back and hip problems, Alison Holmes continues to provide around-the-clock care for her teenage son JJ, whose disabilities do not allow him to walk, talk, sit or feed himself. Alison is terrified about her own health failing before JJ gets off the Medicaid waitlist for home and community-based services. The Holmes family has been waiting for these services for more than 14 years.

Similar tear-inducing stories are widespread throughout Florida, as there are about 25,000 people with developmental disabilities on the Medicaid waitlist for home and community-based services (HCBS). Like the Holmes, families can expect to wait 7 or more years before getting waiver services in Florida.

These Floridians with developmental disabilities are waiting to receive Medicaid waiver services, which provide professional, in-home care as a substitute to institutional care. This program offers a combination of human and health services that range from skilled nursing care to pharmaceutical needs and occupational/speech/physical therapy.

Waiting for Medicaid waiver services can often upend an entire family’s life. Like Alison Holmes, a parent with a child suffering from development disabilities is more likely to work fewer hours or leave the workforce entirely to care for one’s child. Providing this care is very expensive, which consumes more than half of every dollar earned for many families. According to, two out of three caregivers report an annual household income less than $15,000, while caring for a child with development disabilities is estimated to annually cost $8,000 out-of-pocket.

The growth of population in Florida and the state’s shift away from institutional treatment has increased demand for HCBS programs such as the Medicaid waiver waitlist. Still, the Florida legislature has imposed major funding cuts on the Waiver program, including a $43.8 million decrease in funding for the waiver in 2010.

Medicaid Expansion represents the best opportunity to decrease the Medicaid waiver waitlist in Florida. Expanding Medicaid generates revenue and surplus that can offset the cost of expansion and provide savings that these states can use to expand HCBS. By expanding Medicaid, Arkansas saved an estimated $45 million in spending on just enrollees with disabilities in 2016, which could pay for 2,200 new waiver slots and cut their waitlist by more than 75 percent. Medicaid expansion allows states to provide some in-home services and personal care for people on waiting lists. However, states that have not expanded Medicaid have four times the number of people on the Medicaid waiver waitlist as those that have expanded Medicaid.

Expanding Medicaid clearly represents the best opportunity to decrease the Medicaid waiver waitlist and provide adequate care to Floridians with development disabilities. By refusing to expand Medicaid, the Florida legislature is idly allowing more Floridians to join the long line for Medicaid waiver services and denying its citizens with development disabilities affordable, adequate medical care.

What Can You Do?

Floridians like you can help our fight for Medicaid expansion by sharing your health care story or a loved one’s health care experience by emailing In addition, you can advance our campaign through two simple tasks:

  • Recruiting family, friends and co-workers to sign our petition by visiting or texting MEDEX4FL to 52886

  • Contacting your local legislators with one click of the mouse at



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