I once represented a young woman with a disability in foster care system*. She required assistance with almost all activities of daily living, like bathing, eating, and getting in and out of her wheelchair. Like many young people in DC’s foster care system, she was placed with a foster family in Maryland, just a few miles over the border. Her foster mother was wonderful. The two loved each other, and the young woman decided to continue living there after she aged out of foster care.
This might have been one of those rare happy foster care stories, except that when she turned 21, she also aged out of Medicaid’s expansive child-focused benefit (EPSDT), and so lost access to the services she needed. Worse yet, even though she had been placed in Maryland by the District government, once she turned 21 she was no longer considered a DC resident and had to enroll in Maryland Medicaid. That put her at the back of Maryland’s long wait list for home and community-based services (HCBS). She was faced with an untenable choice—leave her home, the hard-earned stability, and the foster mother she had come to love, or risk her health and her life by trying to do without the HCBS she so critically needed. She stayed in Maryland where her foster mother provided countless hours of unpaid support, often sacrificing her own needs, such as sleep. They scraped together an existence, for some time, until the young woman passed due to the progression of her condition. However, the stress this newly formed family went through in the last year of her life was both untenable and wholly avoidable.
This is just one story, but similar situations happen all the time across the country. The details may differ, but the central problem is the same: the flawed structure of Medicaid HCBS.
Medicaid is one of the only types of health coverage that regularly covers HCBS, including personal assistance, supported employment, peer support, and many others. While Medicaid can cover these critical services, the extent to which it does depends on geography (and politics). Some states chose to cover expansive HCBS, but others don’t. This means that two people with the exact same needs living in different states may get vastly different services. Or worse yet, because states can “cap” the number of enrollees or the costs associated with these services, many people end up waiting years, even decades, for Medicaid HCBS services. Even when people are fortunate enough to get HCBS, they often have to forgo opportunities that many people take for granted, like being able to move states for school or a job, or marry and form a family. Those actions can endanger their access to HCBS. Adding insult to injury, these same barriers do not exist for nursing facility care, making it easier for someone who needs assistance to enter institutional care than to remain in their communities.
The HCBS Access Act (HAA) discussion draft, introduced by Senators Brown, Hassan, and Casey, and Representative Dingell on March 16, 2021, offers a permanent fix. It would change the structure of Medicaid HCBS so people with disabilities on Medicaid will get the HCBS they need. Specifically, the HAA would replace waivers and other optional HCBS services with a set of mandatory Medicaid services. That would eliminate wait lists, lower the barriers to move state to state, and reduce the pressure to rely on unpaid, informal caregivers. Access would not be based on a specific diagnosis, but rather on functional need.
This change will no doubt come with a price tag, but it is money well spent. Providing equal access to the full scope of HCBS services would mean that it would no longer be easier for a young adult with a disability to enter a nursing facility than it is to go college. That is a change worth investing in.
*Certain identifying details have been changed.