Federal rules defining ‘community living’ too often prevent exactly that

OPINION:

Elaborate federal rules defining “community living” for people with disabilities too often prevent it from happening when it comes to those with the greatest needs.

Now, as changes sweep through the federal government, we see a moral imperative for the new administration to roll back these restrictions that often work against the welfare of some of the most vulnerable members of our society.

The Home and Community-Based Services regulations — a bundle of requirements best known simply as the Settings Rule — defines and enforces where people with disabilities receiving Medicaid waiver services (the vast majority of individuals with significant impairments) are allowed to live.

As parents of young adults with significant developmental disabilities, we are all too aware of the ways that these well-intentioned federal regulations actually narrow housing choices in ways that would be unacceptable if imposed on any other group of Americans.

Compounding the harm, these requirements discourage faith-based and other organizations from even attempting to develop the types of residential settings that may best serve those with the highest support needs.

In its campaign to slash bureaucracy, the Trump administration should prioritize rescinding or significantly revamping these restrictions to give individuals with disabilities more choice in living arrangements. Encouraging disability housing innovation and entrepreneurship is urgent, as the population of people diagnosed with disabilities — such as severe autism — grows. In many states, aging parent caregivers seeking future residential options for their adult children already face long waiting lists for housing.

Set into motion during the Obama administration, slowed during the first Trump presidency and then fully implemented under President Joe Biden, the Settings Rule has roots in a much-needed movement for change that began decades ago after disturbing revelations of abuse in institutions for people with disabilities.

Early on, the goal of reforms was to guarantee rights and prevent people from facing forced segregation into institutional settings. These are essential aims that were met for more than three decades without the Settings Rule, as the vast majority of individuals with disabilities moved out of institutions and into community settings.

Over time, though, ideological overreach took hold in the form of highly-prescriptive regulations that created significant new problems. Implementation of the Settings Rule today is guided by an unwavering belief that everyone should be living in a house or apartment in a residential neighborhood. This social engineering often runs up against real life. There’s no guarantee that living in a single-family home will lead to a neighbors-showing-up-with-apple-pie sense of community particularly if, like our children, a resident needs a high level of support to engage with others.

Still, the rule often leaves individuals with the sole option of living in small, scattered group homes, which work well for some but at their worst can bring problems ranging from isolation to outright neglect and abuse. In these cases, the Settings Rule can inadvertently lead to a smaller-scale form of institutionalization.

Whatever the scale, every form of housing needs fundamental safeguards to prevent this. But the Settings Rule instead sprawls into nearly every aspect of life with blanket regulations in areas such as visitation, food, even room decoration.

In reality, people with different types and degrees of disability often need different living arrangements. The Settings Rule tips the scales in the most simplistic manner: small is preferred, big is discouraged.

Under this thinking, the rule requires heightened scrutiny of intergenerational communities, farmsteads and other larger campus or village-style concepts that may benefit individuals with disabilities that bring the need for intensive support and concentrated resources for assistance.

Making matters worse, the Settings Rule has had a cascading effect as states are required to impose rules implementing the federal standard. To ensure compliance, many states have set even more stringent requirements than the Settings Rule, sometimes blocking most any option beyond the standard group home.

It’s time to send a different signal — one that will unlock innovation and entrepreneurship to address the severe housing shortage for individuals with significant intellectual disabilities. Rolling back the Settings Rule will spur development of the types of housing suited to those with with the greatest needs. The federal government must stop defining for others what makes a true community and a good home.

• Mark Kendall is a former journalist and California chair for the National Council on Severe Autism. Scott Mendel is a Chicago-based attorney and the chairman of Together for Choice, a nonprofit that advocates for more housing options for people with significant developmental disabilities.