Medicaid advocates urge Florida federal delegation to support $400B for home-based care

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Three Florida-based advocacy groups are calling on Florida’s congressional delegation to support $400 billion for Medicaid Home & Community Based Services.

The Florida Health Justice Project, Disability Rights Florida and Florida Policy Institute gathered more than 420 signatures on a letter in support of the federal program.

“We’re sharing this letter as an effort to educate the public and elected officials about the importance of a program that is profoundly important to the families and individuals who need it, but which most people have never heard of,” said Miriam Harmatz, Florida Health Justice Project’s director of advocacy and founder. “People need to know that we have this transformational chance to fix a huge problem.”

The letter notes COVID-19 amplified the need for HCBS, which allows beneficiaries to receive service in their own home.

“The pandemic provides a stark example of how health outcomes are also adversely impacted by institutionalization,” the letter noted. “Almost 11,000 Florida nursing home residents died due to COVID.”

But Harmatz said the program remains underfunded, more so than any other Medicaid program.

“This underfunding has left thousands of frail seniors and persons with disabilities on waitlists for HCBS,” Harmatz said. “And for those who do get into an HCBS program, there is not enough funding to sustain the workforce, including family caregivers, who provide needed home health services.”

A press release about the letter spotlighted the story of Jacksonville retiree Alene Shaheed, who has lost use of her legs but still can live independently thanks only to the at-home program.

“If Medicaid paid more, they could expand the number of agencies who take Medicaid patients, and people like me would not be left alone,” Shaheed said. “We need funding and incentives to increase the pool of workers willing to provide care for Medicaid patients.”

Advocates say 20,000 Floridians remain on a waiting list for Medicaid service today, and 40% of those have been on that waiting list for more than a decade. Another 60,000 are on a separate waiting list for a longterm care waiver program for frail seniors and those with cognitive and physical disabilities.

Sadaf Knight, CEO of the Florida Policy Institute, said the Florida Legislature has done little to solve the problems and Congress must step up with the HCBS program.

“The COVID-19 pandemic has only exacerbated the demand for HCBS,” Knight said. “If Congress prioritizes funding these services, the benefit will be two-fold for our state: Florida’s growing senior population and people with disabilities will be able to stay in their homes, and this will reduce the demand for more costly, institutional care, therefore offsetting taxpayer costs in the longterm.”

Disability Rights Florida executive director Peter Sleasman said there must be a shift in how federal spending is administered in Florida that shifts focus from institutions toward home-based care.

“As Florida finalizes its planning for receipt of one-time, non-recurring enhanced federal Medicaid HCBS funding, it is imperative that policymakers consider longer-term investments and other service delivery models to address Florida’s historically-underfunded waiver programs,” Sleasman said. “Comprehensive HCBS services are critical to combatting Medicaid’s long-standing ‘institutional bias,’ are less costly than institutionalization, and comply with the Supreme Court’s landmark decision in Olmstead v. L.C. more than two decades ago.”