Why we're concerned about care and conditions in group homes

(Cross-posted from The STS Blog)

Department of Developmental Services Commissioner Terrence Macy has told us he doesn't intend to make the state's licensure inspections of group homes for persons with intellectual disabilities more transparent.

That is the gist of a terse, two-paragraph letter Macy sent us late last month in response to the concern of guardians at the Southbury Training School over the lack of information the Department appears to be willing to provide about care and conditions in those residences.

As we had previously noted to Macy in a May 2 email, DDS provides only the most cursory information on its website relating to licensing inspections of group homes; and any additional information about those inspections, which must be obtained through Freedom of Information requests,  appears to be heavily redacted by DDS.

Macy, however, contended in his letter that licensing and inspection information about these residences really isn't important for STS guardians to know.  Here's his actual statement on the matter:

To some degree I feel this exchange of paper (correspondence) becomes an academic pursuit as regards real information that is useful to Southbury guardians.  On that point, I would offer that there is no better fact finding for a guardian than visits to and conversations between guardians and (group home provider) agencies.  It is my understanding that the visits and conversations that have taken place have been productive.

We strongly disagree with a number of Commissioner Macy's points here. 

First, as we noted to Macy, the 2010 Messier final court order and settlement stipulated that guardians of STS residents should be provided with "sufficient information to make informed decisions" about potential group home placements for those residents.  How, we asked him, can guardians make such informed decisions if the Department is withholding critical information about these residences from them and from the general public?

We don't dispute that it is important for STS guardians to talk with the providers running any group homes the guardians may be considering as placements for their wards.  But we disagree with Macy's implication that such conversations are sufficient in making a critical placement decision that can literally mean life or death for a disabled individual.

We will be sending Macy two important pieces of information that illustrate why we think it is vitally important to have access to licensing and inspection information about the community-based group home system.

The first is a study, titled "Deinstitutionalization in California: Mortality of Persons with Developmental Disabilities After Transfer Into Community Care," 1997-1999, by Robert Shavelle, David Strauss, and Steven Day of The Life Expectancy Project.  The article appeared in the Journal of Data Science [3(2005) 371-380.]

The study analyzed data on mortality rates among 1,878 children and adults who were transferred into group homes from state institutions in California during a major deinstiutitonalization in that state between 1993 and 1996.   As of 1999, there had been 81 deaths among the transferred residents, a 47 percent increase in mortality over that expected in institutions.  (The results were significant at the 95% confidence level.) 

The study concluded that the mortality increase appeared "to reflect the increased mortality rate associated with the less intensive medical care and supervision available in the community."  The study noted that most of the people transferred to community care in California were relocated from state facilities to private group homes.

The study raises two separate issues about community-based care -- the level of medical care available and the level of available supervision.  By supervision, we take the authors to mean oversight of care and conditions in the homes.

The STS guardians have every reason to be concerned about the results of the California mortality study.  They are being pushed hard by this administration, acting on the basis of the Messier settlement, to move their loved ones into community-based group homes.  Thus, full information about the care and conditions in a particular home becomes vitally important.

We think any reasonable person would disagree with Commissioner Macy's statement implying that it is only necessary to visit the homes and talk to the providers running them.  The danger in relying on claims and promises made by the providers is aptly illustrated by the ordeal of Edwin Sanchez, a former STS resident, who was transferred to a group home based on a series of unkept promises made by the provider.

James Sanchez, Edwin's brother and guardian, agreed to move Edwin out of STS after he was promised by the provider that Edwin would receive the same level of care  he had been getting at STS.   As it turned out, the group home staff was not trained or equipped to deal with Edwin's behavioral issues and did not provide him with promised community-based activities.  After one particularly violent episode a year and a half after Edwin had been moved out of STS, the group home management told James his brother could no longer live there. 

Unable to find another place for Edwin, James was forced to take his brother into his own home, where he was also unable to provide proper care.  It was only after the intervention of an attorney on Edwin's behalf that Edwin was re-admitted permanently to STS.

Unfortunately, Edwin Sanchez's story is not unique.  While problems with care and conditions certainly occur in state facilities such as STS, our concern is that they are more likely to happen in the community-based system whose widely dispersed group homes receive less intensive oversight than does STS.

For some time, the VOR, a national advocacy group for the intellectually disabled, has been compiling information about abuse and neglect in group homes around the country into a  single document.  We intend to provide that document to Commissioner Macy as well.

Listing short synopses of abuse and neglect cases state by state, the 43-page VOR document begins with a recent investigation by The New York Times, which found 1,200 deaths attributed to unnatural or unknown causes in group homes in New York State over the past decade.

We would also note that last month, The Hartford Courant reported about neglect and other problems in group homes in Greater Hartford operated by a provider called Humanidad.  Among other problems noted by The Courant, Humanidad's executive director, Evans Jacobs, had hired his son, Jonkay Jacobs, without necessary approvals to investigate internal complaints of abuse and neglect against staff members, despite Jonkay's arrest in 2008 on domestic-violence charges.

Does Commissioner Macy really believe that an STS guardian would find no better source of information about care and conditions in Humanidad group homes than by talking with Evans and Jonkay Jacobs?

In the final analysis, we believe Macy's position regarding the release of information about group homes in Connecticut is contrary to the letter and spirit of the Messier court ruling and settlement.  STS guardians cannot make the informed decisions stipulated under the settlement without full information about the community-based system.