COFAR blog

COFAR is joining a number of advocacy groups in urging the Trump administration to rescind a federal regulation that has sharply limited the size of residential settings and other programs for people with intellectual and developmental disabilities (I/DD) in order to make them “community-based.”

In our view, the regulation, which was implemented during the Obama administration, is a key reason the state is continuing to move away from congregate residential care facilities such as the Wrentham and Hogan Centers. It also appears to have led to the elimination of sheltered workshops and other work-based programs in Massachusetts.

The regulation, known as the “Settings Rule,” specifies that in order to meet requirements for federal Medicaid reimbursement, so-called “community-based settings” cannot be “institutional.” That means they can’t group together disabled people because that supposedly isolates them from their nondisabled peers.

Yet, as Together For Choice, a nationwide advocacy group that is leading the fight against the Settings Rule, points out, federal and state governments shouldn’t be able to determine what a “community” is.  Rather, communities should be chosen by the individuals receiving the services or by their families or guardians.

Those communities could well exist within a congregate care center such as Wrentham or Hogan. Or they could exist within a sheltered workshop or a day program that provides work activities.

But partly due to the pressure of the federal government, the Massachusetts Department of Developmental Services (DDS) maintains that a community is only found in a group home or possibly even something smaller than that, such as a staffed apartment.

The Settings Rule potentially precludes even group homes from community-based reimbursement if they happen to be located “on the grounds of, or adjacent to, a public institution” such as a developmental center.

You can suggest the elimination of the Settings Rule

In May of this year, the Trump administration asked the public to identify regulations that should be rescinded. Together for Choice and a number of other advocacy organizations have identified the Settings Rule as one such regulation that needs to go. You can go to Regulations.gov to submit your own suggestion in that regard. We are doing so as well.

Suggestions will be accepted on the Regulations.gov site until July 10. Feel free to copy and paste portions of this post in the form that appears. Here is a guide to filling out the form.

We previously raised concerns about the Settings Rule, starting in 2014, when it was first proposed (see our posts here and here). More recently, we’ve asked Health and Human Services Secretary Robert F. Kennedy Jr. to reverse federal restrictions on congregate care. Eliminating the Settings Rule may be a key to that.

Mistaken definition of community

The Settings Rule appears to be one of the reasons the Healey administration today is allowing the Wrentham and Hogan Centers to die by attrition. In denying requests for placement at Wrentham and Hogan, DDS maintains that the care provided there is not community-based and therefore is not the “least restrictive” care available.

But this administration policy ignores the wishes of many individuals and their families, who argue that Wrentham and Hogan are communities in themselves, and are well integrated into their surrounding neighborhoods, cities, and towns. Those families also argue that so-called community-based group homes are often not truly integrated into surrounding communities, and are actually quite restrictive in their policies.

As Irene Tanzman, a COFAR member who has created a Facebook group in support of Wrentham and Hogan, pointed out, residents of Wrentham and Hogan “enjoy substantial access to the community. But no matter what they (the facilities) do, according to the Settings Rule, they are deemed as ‘institutional.’”

In March, Scott Mendel, chairman of Together for Choice, wrote to Drew Snyder, deputy administrator and director of the Center for Medicaid and CHIP Services, terming the Settings Rule “one of the biggest impediments to the development of a wide variety of (residential) settings.”

As Mendel noted in his letter:

At present, the implication of the (Settings Rule) is that there is a single “community,” and that community is the geographic area around the setting. This is an artificial and inaccurate construct…

Rather, (communities) are based on common interests, which is, in fact, the dictionary definition of “community.” Individuals with developmental disabilities should have that same right. They should have access to the “communities” of their choosing and such communities should not be geographically confined. Many individuals with disabilities living in a campus setting (like my daughter) or on a farmstead properly view the campus or farmstead as one of their communities. That individual choice should be respected.

Mendel added that:

There is no reason to discriminate against high quality campus settings, farmsteads and intentional communities. They provide a very legitimate model of care for some individuals with developmental disabilities. They should not be presumed to isolate or segregate the individuals they serve.

The result of the Settings Rule is that shortages of available residential placements have been made worse around the country. “Families across the country are clamoring for the easing of regulatory restrictions to enable the development of appropriate settings for their loved ones,” Mendel stated. “The Settings Rule stands in the way.”

In Massachusetts, neither Wrentham nor Hogan is generally offered by DDS as an option to any of the thousands of people who are waiting for residential placements.

In order to stem the tide of the deinstitutionalization movement, which has become an ideological juggernaut over the years, it is important to recognize that the movement has taken root not only at the state level but the federal level as well. To that extent, getting rid of the Settings Rule appears to be a good first step in restoring real choice to disabled individuals and their families in where and how they live.