Where do you want to live as you grow old and —very likely, at some point — lose the ability to take care of yourself? Probably, you want to remain at home, with necessary assistance along with ongoing contact with friends and family. Alternatively, you probably do not want to move into a nursing home.
For persons with limited resources, the Medicaid program increasingly helps persons stay at home by funding home and community-based services (HCBS) as an alternative to nursing home care. HCBS programs can pay for such services as personal care services at home, adult day care services, and assisted living facility care.
Under new Medicaid regulations, states currently are deciding when a service can be considered “community-based” for purposes of Medicaid funding. A recent article in The Atlantic explores the issue with a focus on adults with autism.
Like adults with autism and other persons with disabilities, older Americans have much at stake in the states’ setting of HCBS standards. The most obvious question is: What service models are eligible for payment? Should services in assisted living facilities be covered? What about adult day care programs? Does the size of these programs matter? And should programs be allowed to be “secure”, i.e., locked, if they care for persons with dementia?
These questions are important issues that deserve careful consideration. But they should not crowd out consideration of other, less obvious questions that involve how services are provided. The new federal regulations require (for example) that service providers ensure a person’s rights of privacy, dignity and respect, and optimize individual initiative, autonomy and independence. Under the regulations, each person must be able to make choices regarding services and who provides those services. Also, “integration” with the community under the regulations is not limited to the location and size of the setting; it also involves persons’ ability to engage in community life.
In many states’ policy discussions, we observe an undue concern with maintaining continuing eligibility for current service providers. This presents two problems. First, many current service providers should not remain eligible for Medicaid HCBS funding, as their settings and procedures are overly institutional, and not worthy of the term “community-based.”
Second, implementation of the federal regulations should involve much more than passing judgment on current service providers and settings. If the regulations are to have real impact, the high standards set by the regulations must be become standard operating procedure for HCBS providers. Concepts like dignity and choice must become real. Moving services out of a nursing home is one thing; changing the culture of service provision is challenging but vital, and too long overdue.
It is not purely coincidental that The Atlantic article focused on adults with disabilities, rather than older Americans, since the regulations’ impact on people with disabilities has received most of the attention thus far. We encourage older Americans, their families, consumer advocacy organizations, and social service agencies to change the current dynamic, and take an active role in how the federal regulations are implemented in their state. Such a role might include submitting comments on a state’s draft transition plans, assessing the extent to which current services are “community-based,” and publicizing how the regulations’ standards can improve the way services are provided.