MM Curator summary
There is draft federal legislation what would make HCBS mandatory in Medicaid for all who qualify, which could eliminate waiting lists for these services.
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Marisol Ramos, left, wipes excess makeup off her daughter Naomi’s cheek as the family gets ready to go on a shopping trip in 2017. Naomi has intellectual disability and spent years on a waiting list before finally receiving government-funded services. (Michael Bryant/The Philadelphia Inquirer/TNS)
Work is underway on legislation that could fundamentally transform the nation’s system of home- and community-based services, eliminating waiting lists and allowing people with disabilities to move across state lines without forfeiting critical services and supports.
A draft bill unveiled this month known as the HCBS Access Act would require Medicaid to provide home- and community-based services to everyone who is eligible and establish a minimum set of services that states must offer. The bill is also designed to help states create a network of providers and workers to deliver such supports.
The plan is being put forth by U.S. Rep. Debbie Dingell, D-Mich., along with Sens. Maggie Hassan, D-N.H., Bob Casey, D-Pa., and Sherrod Brown, D-Ohio.
The lawmakers said the “discussion draft” is a “first step to creating HCBS support for all those who are eligible and choose HCBS” and they are seeking feedback in the coming weeks from stakeholders before moving forward with introducing a formal bill.
“The HCBS Access Act would be a huge paradigm shift,” said Nicole Jorwic, senior director of public policy at The Arc who’s advocating for the legislation. “It’s not an overstatement to say this would be a game changer for services and supports for people with disabilities.”
Since home- and community-based services originated in the early 1980s, they have been optional. States provide the services through Medicaid waivers, which vary greatly from one place to another and are limited meaning that people with disabilities often spend years on waiting lists before they can access supports. The waivers are tied to the state where a person lives, so if an individual moves, they often must start the waiting list process anew. By contrast, Medicaid guarantees institutional services to those who qualify.
Under the draft legislation, that would change. Home- and community-based services would be mandatory in the Medicaid program, much like institutional services already are.
“For the 850,000 people on waiting lists, this would be life changing,” Jorwic said. “When you pull that many people into this system, you’re not only helping the people getting the supports and services, you’re also helping family caregivers who are currently filling the gaps in the services system.”
The draft bill would send more federal funding to states and create a basic menu of required home- and community-based services nationwide that states could choose to enhance. Advocates say this would eliminate confusion for families and simplify things for states, which currently operate a range of waiver programs, each with their own target populations and rules.
The lawmakers have also indicated that they intend to include provisions in the bill to strengthen the workforce that provides support to people with disabilities in the community, but they are currently short on specifics about that piece of the plan.
The move comes after President Joe Biden proposed eliminating waiting lists for home- and community-based services and boosting the direct care workforce during his campaign last year.
“The current system is an artifact of a law that is over 55 years old and never envisioned community-based supports for older adults and people with disabilities,” reads a note to stakeholders from the offices of Hassan, Brown, Casey and Dingell. “It is time to establish a baseline criteria for the delivery of HCBS across the country and to make those foundational services an entitlement under Medicaid.”