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

June 11, 2012

By David Kassel

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.

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4 Comments
  1. This is unbelievable in that the state, which is set up to protect our most vulnerable, is putting up roadblocks to families who are trying to do their best to find out information. Site visits are not enough and I know that in our state (Washington) is is almost impossible to find out contacts since the Divisions of Developmental Disabilities treats everything as top secret and does not encourage families to connect with each other – at least families who need high support needs for their loved ones. They do encourage connections for those families who do not need these intense supports though.

    At any rate, we recently had a death in WA of a man who was “forced” to move out of the Residential Habilitation Center (RHC – institution) which closed. Within about 6 months he was dead. He died in October 2011 – this announcement was finally made:

    ADSA: CCRSS #2012-003
    CLIENT HEALTH AND SAFETY: TOXIC SUBSTANCES

    Dear Certified Community Residential Services Provider:

    In the past several months there have been at least four incidents related to toxic substances that were unsecured and available to vulnerable clients. See the following for examples:

    A client drank laundry detergent and died. The detergent was in a milk carton in a place where the client had full access.
    In three cases the toxic substances, such as bleach, were unsecured and readily accessible to clients.

    This client lived in a supported living home – not only were they in great violation by storing the detergent in the milk carton but they did not call first responders when needed and did not recognize a medical emergency even after this man was released from the hospital after a 10 day stay. He return to the same home, developed breathing problems and they sat on it then drove him to the hospital where he was pronounced dead.

    This man was also known to have PICA – His death was not an accident as our state will say but it was negligence if not homicide.

    The citations and inspection documents need to be available for the public and family members to see. Too much is kept secret.

    As one legislator I spoke with yesterday said – he sees that for these so-called advocates who state it will be less expensive to serve these clients in the community (it’s really not if one cared about safety and quality though) that the state is willing to support negligence in order to save a couple hundred dollars. Is this what our states encourage – negligence in care giving? It appears so in these cases.

  2. Barbara Roberts-Hirsch permalink

    It’s fairly obvious why Mr. Macy doesn’t want families and guardians to have complete reports re group home incidents. He, as the former owner/operator of group/community homes, and now acting through DDS, would benefit from the closure of STS, and the coercion which is being placed onto families/guardians, to move their loved ones into community settings. Many of us, from the outset of Gov. Malloy’s appointment of Mr. Macy, have felt like we have the “fox, guarding the henhouse…” Mr. Macy has a vested interest in closing STS, and promoting community placement. Many of the guardians/family members of residents at STS understand/appreciate the high quality of care at STS, and as importantly, understand the benefits of consolidated medical, psychiatric,dental,nursing, etc. care which STS offers. In the community setting, our loved ones would be thrown into the morass of Medicare/Medicaid, with absolutely no guarantee that our loved ones will even be able to find a competent health care facility, able to care adequately for such a compromised, geriatric person. My brother has received excellent, loving care, and loves his home at STS. Even small changes can throw him into a psychiatric tailspin. Moving him into a community setting, away from his caregivers, his companions, and healthcare providers, does not offer him the continuity of care, that he has had at STS. Without being able to see actual written reports of incidents at a group home, I would never consider moving my brother out of STS, into the community. The staff at STS are required to notify me if my brother scratches his arm…we guardians do not have the same level of confidence in the community settings Mr. Macy would have us “visit.” We are fully aware of how easy it is for group home management to deceive….I, for one, will niot accept Mr. Macy’s false and dismissive assurances….afterall, isn’t he the person telling us all, that he has no intent of closing STS? I rest my case.

  3. Al Raymond permalink

    If DDS wants to persuade us guardians to move our loved ones out of STS—where my brother, for one, has happily resided for 48 years—and into group homes, they’re defeating their own purpose by censoring vital information about the group homes.

    No doubt we can learn things by visiting group homes (as he suggests) and talking to people there; but how gullible does he think we are, that we can make life-or-death decisions about our loved ones merely on the basis of unsubstantiated verbal “assurances”? The disgraceful treatment of Edwin Sanchez shows the folly of that!

    A few months ago I asked Comm. Macy why there was no joint effort by the group home and the DMR (now the DDS) to find a more suitable home for Edwin Sanchez. (He refused to answer, citing “privacy” grounds.) Instead, the group home threw him out; the DMR apparently made no effort to help; and Edwin’s brother/guardian encountered only opposition from the court-appointed monitor when he applied for Edwin’s readmission to STS. Only a lawyer’s intervention got Edwin finally readmitted!

    That, if anything, points up the need to get unequivocal WRITTEN commitments from DDS and/or the group homes in question that would survive a lawyer’s scrutiny.

    In addition, my brother is so deaf that only the STS staff knows how to communicate with him. How long would it take the staff at a group home to learn what the STS staff already does so well?
    It was testified at the US District Court in New Haven in October 2010 that the group home staff turnover rate is about ten times higher than at STS—so every time a group home staffer learns how to communicate with him, chances are s/he’d quit for another job and his/her replacement would have to be taught all over again!
    And since my brother can’t hear approaching vehicles, I know he is safer on the STS campus than he would be at any location where traffic is heavier.

    He will be 74 in October—he’s already probably older than most STS residents—and, as he ages, is at increased risk of a stroke or other major illness that, at worst, could leave him paralyzed and/or incontinent. If he is at STS, I know he will get the care he needs even in the worst-case scenario.

    And again, the case of Edwin Sanchez makes me question the ability and willingness of any group home to give my brother the care he would need. If STS were ever closed—and given the right of nursing homes to refuse patients who are intellectually disabled—where would my brother go if he were kicked out of a group home on the excuse that it couldn’t care for him?

    One thing seems pretty sure—the DDS probably wouldn’t lift a finger to help find another home for my brother.

  4. Jack R permalink

    The REALITY is there are few people trained to deal with the most complex cases. Time and time again, we parents are PROMISED services that NEVER come to fruition. Mostly, because there is no quality control. Nobody who really KNOWS the person involved monitors these complex situations when they LEAVE the state institutions. Parents are often the most informed as to what their child needs. Yet, they are seldom consulted. IF the state really cares, they would UTILIZE the parent who have DEMONSTRATED supreme knowledge in caring and protecting their severely autistic or otherwise disabled children and SEEK their continuous PAID consultant advise as to HOW to keep the children or adults SAFE in out of home placements. Yet, they seldom if ever do this. Too many employees who are overpaid and sub-intelligent are placed in positions of authority to handle these cases. There are few parents who are truly able to do this job. And they remain untapped. True success will only come when the state agencies charged with handling severe and complex cases realize they need to seek those who know what to do. How to advocate. How to protect. How to research. How to push for the services and monitor those who are taking care of these complex cases.

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