Archive for September, 2014

Heavily redacted state reports raise more questions than answers in sudden deaths of DDS clients

September 29, 2014 2 comments

More than three years after the sudden death of a former resident of the Templeton Developmental Center, we have received a report on the matter from the state Disabled Persons Protection Commission, which found that the resident had adequate care and services at the time of his death and that there was no evidence he had been neglected or abused.

But the report is so heavily redacted that it is difficult to determine whether a number of specific questions and allegations that had been raised about the person’s care were actually investigated.  It is also unclear why it took nearly two years for the DPPC to provide us with the report, which was completed and approved by a supervisor in the agency in November 2012.

The former Templeton Center resident died on July 24, 2011, four days after he was transferred to a state-operated group home in Tewksbury.  The cause of death was reportedly a blood clot in his lung.

This was one of three cases we heard about in 2011 and 2012 in which clients of the Department of Developmental Services, each of whom happened to be a man in his 50’s, died suddenly after being transferred from developmental centers to state-run group homes operated by Northeast Residential Services, a division of DDS.  A second case was that of a former resident of the Fernald Developmental Center, who died on July 6, 2011, after having ingested a plastic bag in a Northeast Residential Services group home in which he was living in Tyngsborough.

In that second case, a DPPC report concluded that there was a lack of adequate supervision of the man by his caregivers, although the investigative agency was unable to determine whether the man had ingested the plastic bag while he was in the group home or his day program or was being transported between the two.  That report was also so heavily redacted that it left numerous questions about the incident unanswered for us, including whether the man’s care plan may have been significantly changed after he left the Fernald Center.

In a third case, a 51-year-old resident of a Northeast Residential Services home in Chelmsford died of acute respiratory failure on February 7, 2012, after having been sent back to his residence twice by Lowell General Hospital.  That man had formerly lived at the Fernald Center as well. We have just requested that report from the DPPC.

While it is of course disturbing that three DDS clients would die suddenly in a relatively short span of time in the same regional group home system, we have no information to indicate that staff in any of the Northeast Residential Services homes were at fault in any of the deaths. These cases may in fact raise more questions about the DPPC’s investigation and reporting procedures than they do about care in DDS-run group homes.

In the case of the man who died of a blood clot four days after leaving Templeton, we raised questions at the time whether the stress of the move may have contributed to his death, or whether there was a medication error or other care issue involved.  It was also unclear whether staff familiar to the man while he was at Templeton was available to accompany him to his new residence in Tewksbury.  Moreover, we noted that DDS may not have had uniform policies or procedures in place as to whether familiar staff should accompany transferred residents to their new locations.

The DPPC report found that the man had direct-care staff available 24 hours a day and nursing staff “as needed” in his group home,  and that there was no evidence that any medication error had occurred.

I have written to the DPPC to ask why it took so long to release the report on the former Templeton resident’s death.  I had requested a copy of the report by letter on October 31, 2011.   The report is dated as having been completed on November 1, 2012, and as having been approved by a DPPC supervisor that same day.  It was mailed to us with a cover letter, dated September 17, 2014.

In contrast, the report on the July 2011 death of the former Fernald resident who ingested the plastic bag, while also heavily redacted, was dated March 29, 2012, and provided to us in May of 2012.

The former Templeton resident’s guardian, who was also his niece, told me after his death in July 2011 that her uncle had had a blood clot in his leg about a year before the move from Templeton (deep venous thrombosis), but the problem had been cleared up.  She said he had been put on a blood thinner called Coumadin, but that she later found out that he was taken off that medication while he was still at Templeton.  She said she was never consulted about the decision to take him off the medication.  The guardian said that other than the instance of thrombosis, her uncle had only minor health problems.  He had worked every day in the dairy barn at Templeton.

While most of the discussion in the DPPC report on the issue of the former Templeton resident’s medication appears to have been redacted, there was a statement in the report that “all necessary medications were continued,” and that a review of documentation from July 19 through the day of his death on July 24, 2011, “indicates no medication error occurred.”  Due to the redactions, however, it could not be determined from the report which medications the DPPC considered to be necessary.  There was no mention in the unredacted portions of the report of any allegation that the Coumadin had been discontinued.

The guardian had also told me the staff from the group home had spent about a week at Templeton with her uncle prior to the move, but she was not sure whether any familiar staff from Templeton accompanied him during the actual transfer to the new residence.  The unredacted portions of the DPPC report were not clear concerning this potential allegation either.

According to the DPPC report,  the man’s move from Templeton to the Northeast Residential group home had been planned, and staff from both facilities attended the planning meetings.  The resident was actively involved in choosing the new residence and visited it along with familiar staff and family prior to moving there, the report stated.

In discussing the circumstances of the man’s death, the DPPC report stated that he had left his bedroom at 9:15 on the morning of July 24, 2011, and had indicated he was not feeling well.  Three staff members responded immediately.  The man became short of breath and then unresponsive, so CPR was initiated immediately and 911 was called.  CPR was continued until the arrival of paramedics, who continued it while the man was transported to a hospital by ambulance.  He was pronounced dead at 9:47 a.m.

The March 29 DPPC report on the death of the man who ingested the plastic bag also leaves many questions unanswered about his care, including whether the man’s Individual Support Plan (ISP) had been changed in a significant way after he left the Fernald Center, and whether his level of supervision in the group home was less than the level he had received while at Fernald.  There is an indication in the report that the man’s ISP was changed in September 2010, apparently after he moved to the group home, to remove “target (presumably inedible) items”  from mention in the plan.  Much of this discussion, however, was redacted in the report.

The man reportedly had a history of ingesting foreign objects, a condition known as pica.  However, even what was apparently the word “pica” was redacted throughout the report.

It is understandable that public health and human service agencies have a desire to protect the privacy of individuals in their care or their jurisdiction.  But it often seems that the desire to redact or withhold information goes much farther than necessary and fails to protect the public’s right to know about these cases.  In our view, the two DPPC reports discussed here fall into that latter category.  We believe much of the redacted information in both cases could have been made public without compromising either of these individuals’ privacy in any way.

The questions raised about the care and services that were investigated in these cases are important ones.  Something seems to be wrong when investigative and other agencies withhold key facts about cases like these and end up being the only ones who know those facts.






DDS policy will disperse people and care

September 22, 2014 4 comments

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.

DDS should be looking, as noted, at ways to serve people who are waiting for care.  As the Massachusetts Developmental Disabilities Council pointed out in its 2014 state plan, Massachusetts is lagging behind other states in funding and providing care and services for people with developmental disabilities.

The Developmental Disabilities Council described “limited options due to a lack of adequate resources” for adults entering the DDS system.  In light of all of that, we fail to understand why the Patrick administration has issued a policy that will only further limit options available to people with developmental disabilities.

Why the Fernald land deal should include a plan for the developmentally disabled

September 2, 2014 3 comments

The history of what is now known as the Fernald Developmental Center hasn’t been free of some serious blemishes or controversy.  But from 1889 to the present time, Fernald’s 200-acre campus in Waltham has been the site of a facility providing residential care for persons with intellectual disabilities.

That’s all about to change permanently.

Under legislation negotiated among representatives of the Patrick administration, the City of Waltham, and local legislators, the state will sell the campus to the city for $3.7 million, which comes to 18,500 per acre — a price that has been described as “dirt cheap.”  It appears there is also a requirement that the city pay the state up to half the proceeds from the re-sale of any of that land to developers.

There is just one group of people that seems to have been left out of the plans and negotiations. That group is the developmentally disabled — the very persons who had been living at Fernald all along.  Other than keeping the therapeutic swimming pool open at Fernald and maintaining a 29-bed nursing home on the campus, there appear to be no plans to continue to provide care or services at the Fernald site for persons with disabilities who live in the surrounding community.

This is an unfortunate oversight, not only for the residents who have been forced to leave Fernald, but for developmentally disabled people in the community.  As I’ll explain, the lack of a plan for integrated, community-based care at the Fernald site has been, and will continue to be, both a missed opportunity to help those waiting for services and a potential waste of taxpayer money.

First, I would note that the Fernald Working Group, a coalition of local organizations, had recommended that a portion of the campus remain the site of residential care and services for the intellectually disabled.  Similar proposals have been made over the years by the former Fernald League and COFAR.  Both of those latter groups suggested a “postage-stamp” arrangement under which existing residents would live in housing situated in a small area of the campus while the rest of the campus was converted to other uses.  And Waltham Mayor Jeannette McCarthy, the chair of a Fernald Reuse Committee, also publicly supported the continued use of part of the campus for institutional, residential and health care.

But the then Romney and subsequent Patrick administrations were interested only in one thing — closing Fernald and three other developmental centers in the state, contending the state would save tens of millions of dollars a year in doing so.  They never considered any of the proposed alternatives to the closures, and have never done what administrations in other states have done, which is to propose the integration of congregate care facilities for the developmentally disabled with their surrounding communities.

The result is that since 2008, two of six remaining developmental centers in Massachusetts have been closed; a third center is being converted to state-run group homes, and just two residents of the Fernald Center remain on the campus out of a total of 160 who were there at that time. Most of the residents living in the four facilities targeted for closure were dispersed around the state, with the majority going either to state-operated group homes or to the Wrentham Developmental Center.  Why has all of this been a missed opportunity and a potential waste of taxpayer money?

First, with regard to the cost to taxpayers, the administration projected that Fernald would be closed by July 2010, but the closure was blocked for four years by administrative and court appeals filed by guardians on behalf of some 20 remaining residents there.  The administration elected to keep Fernald open only for the remaining residents there, pending resolution of their administrative and court appeals.  This turned out to be an extremely inefficient way to proceed.

Not only has there been an undisclosed cost to the state in fighting the legal battle to close Fernald over the past decade, but as the population dwindled in all four targeted facilities, the cost per resident of care there shot up due to fixed costs such as heating and other utilities in larger buildings.  This was particularly true for Fernald, which has remained open for more than four years with 20 or fewer residents.

The administration could have saved millions of dollars a year since 2010 had it been willing to consider and negotiate an alternative to outright closures of the facilities. The legal battle over Fernald would have ended immediately, and instead of continuing to house the remaining residents in several locations on campus, the state could have built small, cost-efficient housing in one location for the residents.  That proposed alternative to closure has rarely if ever been reported on by the media, which has instead adopted the position of the administration and its corporate providers that the high cost of continuing to operate Fernald has been solely the fault of the residents remaining there.

Moreover, dozens of the Former Fernald residents were sent, as noted, to the Wrentham Center, which amounted to transferring residents from one developmental center to another.  Not only was there no real savings in doing this, but the administration was forced to undertake renovations at Wrentham in order to accommodate the former Fernald residents — a project that cost taxpayers at least $3.2 million.

There is a second, and potentially greater, cost to taxpayers in closing Fernald and the other developmental centers without planning for any continuation of care at those sites that could be integrated with their surrounding communities.  As we have noted, an undisclosed number of developmentally disabled people throughout the state have been unable to access services or care from DDS due to a lack of resources.  The state has tried to address this problem by expanding the provider-run residential system, which has involved building more than 150 group homes spread around the state since 2008 and substantially increasing rates paid to the providers.

But there is no centralized system of care in the provider-run system.  People have to be transported to day programs and for medical and other types of care — a process that is potentially much more expensive than if all of this care were available in centralized locations. Continuing to provide centralized care at developmental center sites could both allow more people in the surrounding community to receive services and provide those services more cost-effectively than is the case in a system consisting almost entirely of disbursed group homes.

We have also pointed out the potentially high cost of privatized care in Massachusetts and elsewhere due to the thick layer of highly paid corporate executives in that system.

That there isn’t necessarily a long-term savings in transferring people from developmental centers to decentralized, provider-based care has been acknowledged even by one of the leading proponents of deinstitutionalization in the Obama administration.  I’ve blogged about a law journal article written by Samuel Bagenstos, a former top litigator in the Justice Department’s Civil Rights Division, in which Bagenstos stated that any cost savings in closing developmental centers “will shrink as people in the community receive more services.” He added that a significant part of the cost difference between institutional and provider-based care “reflects differences in the wages paid to workers in institutional and community settings — differences…that states will face increasing pressures to narrow.”

All of this is why we supported the vision of the Fernald Working Group, which described “a progressive site at Fernald where open space and greenways can be matched with an equal vision of integration for individuals with disabilities.” That vision encompassed both existing residents and disabled persons in the surrounding community.  The Working Group specified that this vision included new housing and the preservation of the therapeutic pool and gym at Fernald as well as the chapel and programs for physical therapy, dental and medical services.  As the vision statement noted, “all of these services could become part of the community and economic life of the Fernald redevelopment.”

But as far as we can tell, the Working Group’s vision has not been adopted by either the administration or the Legislature.  While the newly signed legislation to sell the Fernald land to the city provides incentives for adopting “smart growth principles” and affordable housing in the development of the site, it makes no mention of continued services or care for persons with developmental disabilities.

Last week, I emailed Senator Michael Barrett and Representatives Tom Stanley and John Lawn, the key sponsors of the land sale legislation, to ask whether the continued use of a portion of the Fernald campus for individuals with disabilities was considered in the negotiations over the bill and whether any provisions for that might be made in the future.

A staffer in Barrett’s office said that no proposals to serve the developmentally disabled at Fernald were made at a public hearing on the land sale bill that was held in July by the Legislature’s State Administration Committee, and the idea was therefore not considered. But while the Village at Fernald concept for the disabled may not have been raised at a public hearing earlier this summer, most, if not all, of the negotiating parties to the legislation have long been aware of that concept.  It should have been a part of the legislation from the beginning.

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