COFAR blog

A new Patrick administration policy statement on care and services for people with developmental disabilities states that its intention is to enable people to lead “fully integrated lives” in the community.

But the statement, which was issued on September 2 by the Department of Developmental Services, would appear to take us further down a path of dispersal and isolation of people in the DDS system.

Among other provisions, the policy states that DDS will limit the number of people living in new group homes to five or fewer.   Individuals who continue to live in “non-compliant” residences could be dis-enrolled from the Department’s Medicaid-funded programs, the policy states.

In setting the five-person limit, the policy goes even further than a new Obama administration regulation on Medicaid-funded, community-based care on which the state policy is supposedly based.  The Massachusetts policy even bans new programs that provide farm-based residential care to people with developmental disabilities, and further appears to ban new residential programs that provide recreation or other programs to groups of disabled people.

All of those programs and services are apparently too “institutional” for the Patrick administration, which apparently believes that any setting that serves more than five disabled people automatically “isolates them from the broader community.”

Massachusetts DDS Commissioner Elin Howe signed the policy, which states that it is based on the new federal rule issued by the Centers for Medicare and Medicaid Services (CMS), which sets new standards for providing Medicaid funding to community-based providers.  But while the Massachusetts policy is supposedly based on the CMS rule, the CMS specifically rejected a proposal to specify the number of people who are allowed to live in community-based facilities.

In responses to comments about its proposed rules, the CMS stated that while they initially proposed a limit on the number of people who can live in group homes and still qualify for Medicaid funding, they were persuaded by public comments that “this was not a useful or appropriate way to differentiate between institutional and home and community based care.”

The DDS policy is not as draconian as that of the highly ideological National Council on Disability, which has determined that any facility housing four or more people is “institutional” in nature and should be shut down.  Nevertheless, one has to ask why the Patrick administration would set a limit on the number of people who can live in new group homes when even the federal administration, which strongly favors community-based care, has determined that such a limit is not useful or appropriate.

As was the case with sheltered workshops, the Patrick administration has shown itself to be more ideologically opposed to state-run and congregate care than the federal government.  It seems to us DDS’s policies on sheltered workshops and community-based care will only further disperse people and services, and ironically, further isolate them. While advocates of deinstitutionalization have long argued that community-based care is intended to reduce isolation, the opposite appears to be occurring.

Other troubling aspects of the new DDS policy on community-based care stem from its statement that DDS will not license, fund or support new residential settings with “characteristics that isolate individuals from the broader community.”  That’s fine in itself, but the policy goes on to say that those isolating characteristics are to be found in:

• “Settings that have limited, if any, interaction with the broader community.”

But what does limited interaction mean and who judges it?  The policy doesn’t define this. In fact, we often hear complaints from family members and guardians that small group homes provide for virtually no interaction with the broader community.  In this sense, we have always considered that larger, congregate facilities provide more of a sense of community, almost by definition, than do many group homes.

• “Settings that use or authorize restrictions that are used in institutional settings.”

What restrictions?  The policy gives no further information on this.

• “Farmsteads or disability-specific farm community (sic).”

Why the ban on farmsteads?  Farm-based programs have been found to be highly conducive to treatment and well-being of developmentally disabled individuals.  Last year, I wrote a post on the SAGE Foundation blogsite about three successful farm-based programs, each of which provides a range of treatment, crafts, and other programs and services to people with either developmental disabilities or mental illness.  Many of these farm programs were founded by parents frustrated by the lack of services available to people with autism, in particular.

• “Gated or secured communities for people with disabilities.”

The DDS policy provides no further information on this.

• “Settings that are part of or adjacent to a residential school.”

This provision is a troublesome aspect as well of the CMS rule.  How does being adjacent to a residential school somehow makes a residential setting institutional?

• “Multiple settings co-located and operationally-related that congregate a large number of people with disabilities for significant shared programming and staff.”

This appears to limit many potentially effective programs and ideas. I’ve written about two of these ideas to develop residential services and programs for a larger number of people in both community and developmental-center settings. Given the large number of people waiting for care and services in Massachusetts and other states, it makes sense to consider these proposals.