Against the Trend: Two States Expanding Roles of Congregate Care Facilities for the Developmentally Disabled

The following post has been gratefully borrowed from the COFAR blog. COFAR is the acronym for the Massachusetts Coalition of Families and Advocates, Inc., a statewide, family-supported nonprofit organzation that advocates on behalf of persons with intellectual disabilities. You can find out more about their work by visiting the COFAR website and find more helpful information on their blog at cofarblog.wordpress.com.

The politically incorrect idea of bringing congregate and community care together

Two initiatives in two separate states call for something that would seem to make perfect sense — expand the missions of congregate care facilities for the developmentally disabled, and merge them with their surrounding communities.

In one case, the State of Delaware is proposing to expand services available at the Stockley Developmental Center by offering medical and dental care now available there to developmentally disabled and under-served persons living in the community. A Delaware state task force has also called for considering an indoor community sports center or outdoor playing fields at the Stockley facility; and opening up a therapeutic horseback riding program and a therapeutic pool at Stockley to the surrounding community as well.

Like most of the developmental centers in Massachusetts, the Stockley Center sits on hundreds of acres of largely unused land, and currently serves only a small fraction of the hundreds of people who lived there four decades ago.

In the second initiative, the Arc of Jacksonville in Florida has been awarded state funding and tax credits to help construct a “planned neighborhood” in that state for adults with intellectual and developmental disabilities, according to The Florida Times Union.  The newspaper reported that the “Arc Village” will house about 120 adults – ages 18 and older – in 97 one- and two-bedroom apartments. The $17.7 million project will allow residents to “live, work, shop, recreate, and socialize,” in one place.

Unfortunately, neither of these innovative initiatives would be likely to move forward in the “progressive” state of Massachusetts, and neither may get the backing of the Obama administration.  That’s because each of the proposals envisions providing services to a large number of people in one location — a non-starter to the ideological opponents of “congregate care.”

Congregate care, you see, is “institutional,” and therefore bad by definition for people with developmental disabilities.  It’s apparently better that they live in small group homes or apartments dispersed throughout the state. We happen to think that placing everyone in dispersed group homes or apartments is actually a recipe for isolation and a new form of warehousing of people with developmental disabilities, all the while lining the pockets of the executives of hundreds of state-funded, corporate providers.  (More about that in a coming post.)

But the Patrick administration in Massachusetts has voiced its opposition to  congregate care and has moved to close four out of six remaining developmental centers in this state.  Two of those centers have now been shut and most the residents have moved either to one of the two remaining centers or to group homes throughout the commonwealth.  Longstanding proposals by advocates of those developmental centers to more effectively merge them with their surrounding communities — similar to the Delaware proposal for the Stockley Center — were all rebuffed by the Patrick administration.

Meanwhile, the federal Centers for Medicare and Medicaid Services (CMS) are moving to change their definition of federally reimbursable community-based care to exclude even group homes that happen to be located on the grounds of, or even near to, a public institution such as a developmental center.  And the National Council on Disability has declared that an “institution” is a “facility of four or more people who did not choose to live together.”  The NCD’s definition, which applies even to many group homes, was contained in a report in 2012 that states in its first sentence that closure of all such “institutions” should be “a top public policy priority in every state where such institutions exist.”  The NCD advises the president and Congress on disability issues.

It’s hard to imaging the NCD supporting the Arc of Jacksonville’s proposal, in particular, which would establish a single setting, albeit a “neighborhood,” which would house 120 clients. And the Stockley Center proposal would not appear to conform to the CMS’s proposed definition of community-based care.

It seems to us, though, that the inclusive approaches being proposed in Delaware and Florida represent the future of care of the developmentally disabled in this country.  Both proposals appear to recognize that congregate care is a valid option for people who want and need it, and that it can coexist with, and even be a part of, community-based care.  Note that we’re not saying congregate care is right for everyone or that it should replace care in smaller settings.

The administration of Delaware Governor Jack Markell certainly appears to recognize that a congregate care center such as Stockley, which meets federal Intermediate Care Facility ICF/DD) standards, is worth maintaining as a residential option for its current residents.  The Delaware state task force report states among its “general principles” that its proposal for the Stockley Center would include “a commitment to maintain and build upon a peaceful environment that the people at Stockley Center currently enjoy.”

Rita Landgraf, secretary of the Delaware Department of Health and Social Services, was quoted in The Wilmington (DE) News Journal as saying: ”We do have individuals who still live here on site. It is critically important that we bring inclusion to them. This was not a discussion of closing Stockley. Sometimes I hear that, out in the public. But we are not closing Stockley.”

Among the specific task force proposals for the Stockley Center that would establish the center as a critical component of community-based care in Delaware are the following:

• Creation at the Stockley facility of a “Center for Excellence,” which would offer “integrated health support and disease prevention services to communities for which health services are hard to access.”
• Creation of a facility at Stockley to support respite care, both for individuals with disabilities in the community system and caregivers.
• Expanding the use of the Stockley pool or other therapeutic facilities for individuals with disabilities “first in Sussex County (DE) and beyond, as feasible.”
• Creating an “intergenerational multi-use center for wellness that supports active living and wellness, including classes for smoking cessation, fitness, nutrition, behavioral health, obesity, cardiovascular disease and stress management.”
• Developing fully accessible community vegetable gardens for an “integrated community” of county residents, including low income families; and hosting a farmers’ market.
• Creating a “model of mixed-use development”on the Stockley campus site, including affordable housing, stores, restaurants, dental and medical, and recreational facilities.
• Creating a training center to provide professional development for medical and care providers.
• Encouraging schools to use the Stockley property for nature and science instruction.
• Providing education, support, life skills and vocational or job training programs for people with disabilities.
• Creating a center for volunteer and nonprofit groups.
• Creating an outdoor trail system for users of all ages and abilities.

Contrast the excitement and vision of that approach with Massachusetts where we’ve seen only the systematic dismantling of congregate care for people with developmental disabilities.  We will soon be down to two remaining ICF-level care centers, and what remains of state-operated care is under siege as facilities and services continue to be privatized.  It’s refreshing to know that not all state administrations have that mindset, and that in some places, new ideas are being tried by people who are not blinded by outdated ideologies.  We, however, are being left in their dust.