Long-term care planning lacking for Americans with disabilities: 6 things to know

Experts and advocates warn that a lack of long-term planning, coupled with a flawed social safety net, could create a crisis where people with disabilities are no longer able to live independently, Kaiser Health News reported Nov. 11. 

Six things to know: 

1. About 25 percent of U.S. adults live with a disability and nearly 75 percent live with a family caregiver, according to the report. One-fourth of those caregivers are 60 or older. 

2. Only about half of families who care for a loved one with disabilities have made plans for the future, according to the report. A smaller percentage have revisited those plans to ensure they are up to date. 

3. Meghan Burke, PhD, an associate professor of special education at the University of Illinois in Urbana-Champaign, told Kaiser Health News barriers to planning for the future include financial constraints, reluctance to have hard conservations and difficulty understanding government services. 

4. Medicaid pays for people to receive services in home and community settings, but there are long waiting lists, according to the report. Even when people qualify, hiring providers can be challenging due to staff shortages.   

5. Congress recently earmarked $12.7 billion toward enhancing state Medicaid programs for home and community-based services, but those funds are available only through March 2025, according to the report. The Build Back Better Act would have added $150 billion, but the legislation died in Congress. Funding was also left out of the Inflation Reduction Act. 

6. HHS' Administration for Community Living recently released the agency's first national plan, which outlines actions the public and private sectors can take to support caregivers. 

"If we don't really think and plan, I'm concerned that we could have people ending up in institutions and other types of segregated settings that could and should be able to be supported in the community," Alison Barkoff, acting administrator for the Administration for Community Living, told Kaiser Health News

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