Archive
Sheltered workshops under fire in Massachusetts
Paul Buonomo enjoys his job stuffing envelopes, collating papers and carrying out other tasks in a program in Danvers known as a sheltered workshop.
His parents, Doris and Joe Buonomo, maintain that the workshop, run by Heritage Industries, is the best such program Paul has ever been in.
But in the wake of a national debate over the political correctness of sheltered workshop programs for people with developmental disabilities, programs such as Paul’s may soon be phased out. Here in Massachusetts, the Department of Developmental Services is reviewing its policies regarding sheltered workshops and has invited state-funded providers into a working group to determine what the future will be for the programs.
Sheltered workshops provide opportunities for developmentally disabled people to do assembly work and other tasks, usually for a small amount of pay, in group settings. The charge of political incorrectness stems from the fact that the workers are not participating in the nation’s mainstream workforce and are therefore allegedly being “segregated” from non-disabled people. In many – perhaps in most – cases they also receive sub-minimum wages.
The charge that sheltered workshops promote segregation and inadequate pay to disabled people is being leveled not only by a number of advocacy groups, but by government agencies, including the federal Department of Justice and the National Council on Disability.
These are the same advocates and agencies, by the way, that have long opposed all forms of congregate care for the developmentally disabled.
But supporters of sheltered workshops, many of whom are family members of the workshop participants, argue that these programs provide their loved ones with fulfilling work and skill-building activities, and that if the programs were eliminated, there would often be nothing to take their place.
The Buonomos, for example, don’t believe their son, who is 60 and has moderate intellectual disability, is at all segregated or placed at a disadvantage because he isn’t receiving a competitive wage in a mainstream workforce setting. Heritage Industries provides Paul with a check every two weeks that varies from $2 to $10, depending on the amount of work Paul does, according to Joe Buonomo. It’s not much money, Joe says, but Paul lives in a state-operated group home and doesn’t personally have to deal with financial pressures that would necessitate a job paying a competitive wage.
Gail Orzechowski, whose sister, Carol Chunglo, 73, participates in a sheltered workshop in Orange operated by Interface Precision Benchworks, maintains that the program has “opened up her (Carol’s) world. I don’t know how they can say she’s segregated,” she adds.
The Arc of Massachusetts has stated that the impetus in Massachusetts to reconsider its sheltered workshop policies stems from litigation in Rhode Island and Oregon, which has involved the Justice Department.
In the Rhode Island case, a service provider was accused of improperly “segregating” developmentally disabled persons in a sheltered workshop and paying them sub-minimum wages. Under a settlement of the case, clients in sheltered workshops will be switched to supervised mainstream employment, which implies the end of sheltered workshops in that state.
Following the June settlement in Rhode Island, a Department of Justice official maintained that from that point on, every developmentally disabled client in the state’s sheltered workshops would receive “real jobs with real wages,” and would no longer be subject to “the tyranny of segregation.”
It’s not quite clear to us, though, how providing real jobs at real wages to all disabled people will actually happen. Like the Buonomos and Gail Orzechowski, we also don’t buy the charge of segregation when it comes sheltered workshops, in particular. Doris Buonomo says she hopes DDS will listen to outside voices, particularly those of parents like her and her husband Joe, who believe the workshops have made a positive difference in their loved ones’ lives. Thurs far, we have heard only that DDS has invited the Massachusetts Association of Developmental Disabilities Providers and the Massachusetts Arc to participate in the working group that is reviewing the Department’s sheltered workshop policies. Both of those organizations have taken positions against the workshops (here and here).
Meanwhile, family members and other supporters of sheltered workshops around the country are fighting the tide of closures of sheltered workshop programs. They contend the Justice Department and other opponents of the workshops are fighting an ideological war, but are offering no viable alternatives.
In New Jersey, the state Legislature stepped in this summer to prevent a plan by the state to close the state’s sheltered workshops. The New Jersey plan to defund the workshops met with opposition from advocates and from program participants and their families around the state, according to The Burlington County Times.
An online petition filed by Missouri AID, an advocacy organization for the intellectually disabled, states that sheltered workshops “are the only places where some individuals can work and function as productive members of the community.” The petition, which garnered 3,092 signatures, adds that:
There are countless horror stories about individuals who have tried supported (mainstream) employment, and they fell in with the wrong group of individuals, were taken advantage of, sent to prison, or ended up walking the streets alone. Sheltered workshops throughout the U. S. provide a safe environment for adults with (intellectual and developmental disabilities) to work, interact with their peers, and gain a sense of accomplishment…
The Missouri AID petition adds that “We should be creating more employment opportunities for people with disabilities – not eliminating options.”
While the idea that people with developmental disabilities should work alongside non-disabled peers and earn competitive wages is good in theory, it doesn’t always work in practice, Doris Bunomo notes. In Paul’s case, for instance, a job at Walmart ended badly for Paul even though he had gotten good performance evaluations there for a job stocking shelves, and had even earned a promotion.
Doris said Paul had been working at Walmart for a year, but an incident occurred one day in which he got “upset,” leading to a situation in which he was lectured by the manager and threatened with being fired. Doris said a support staff person for Paul did not follow an agreed-upon protocol between the residence and Walmart, and Paul did not work there again. Doris maintains that many people with developmental disabilities can work in professional or business settings with careful supervision, but that is not always possible.
“I think he’s very pleased where he is,” Joe Buonomo says of his son, adding that while Paul primarily interacts with other developmentally disabled people in his sheltered workshop, there are many opportunities in his life to meet people who are not disabled.
”I don’t think he (Paul) feels restricted in any way,” Joe maintains. In addition to the many community-based functions that Paul attends via his group home, he often helps Doris deliver books and other items to their local library and church. Also, given Paul’s lifelong love of trains, his parents have also often taken him to the freight train terminal in South Portland, Maine, where he has “made a ton of friends with the workmen” over the years, Joe says.
Orzechowski says the workshop that employs her sister Carol has helped teach her how to function socially. “Her eating habits and her other social habits have improved, and she’s developed friendships since she’s been in the program,” Orzechowski says of her sister, who she describes as having a severe level of intellectual disability. Carol, she says, also has many opportunities to interact with people in the community, including vacations that she has taken with money earned from her workshop program.
It’s far from clear what may happen in Massachusetts regarding sheltered workshops. We certainly hope that whatever is done, DDS will first consult with the families involved such as the Buonomos and Gail Orzechowski. If DDS does listen to those people, the Department will find a way to keep these valuable sheltered workshop programs running.
Bedford group home resident’s injuries raise disturbing questions
We don’t yet know what happened to cause the serious injuries suffered in late August by Paul Stanizzi, a resident of a group home for the intellectually disabled in Bedford.
The incident is currently under investigation by the Bedford Police Department, which, as of Friday, was declining comment on the matter and would not even issue a police report. But whether Stanizzi was assaulted or whether the injuries were somehow self-inflected or an accident, the incident raises serious questions about the operation and management of the residence.
Fox25 TV news reported on September 9 that Stanizzi, who is non-verbal, was found lying on the floor in his room by a staff worker at the group home, which is run by the Edinburg Center, Inc., a nonprofit provider that is funded by the state Department of Developmental Services.
After Paul Stanizzi’s mother was called by the staff worker, the family rushed to a hospital and found Paul unresponsive in a hospital bed. His brother Joe pointed out to Fox25 reporter Mike Beaudet that Paul had a black eye, a bloody nose, bruises on his fingers, scratches on his arm, what appeared to be fingerprint bruises on his arms, two larger bruises on his leg, a cut on his knee, and other abrasions.
Despite all that, the hospital was about to discharge Paul, Beaudet reported. But when Paul’s father tried to raise him from the bed, his head flopped down. An MRI subsequently revealed damage to the vertebrae around his neck. According to the Fox report, medical records noted “possible recent injury” as a cause. The doctors performed emergency surgery. It is apparently not clear whether Paul, who remains in the hospital, has been permanently paralyzed from that injury.
In a statement, Edinburg CEO Ellen Attaliades told Fox25 she could not discuss Stanizzi’s medical condition because of patient confidentiality rules. But she added, “Unfortunately there are instances when individuals with severe developmental disabilities can injure themselves through their own physical actions. To allege abuse without any evidence and without considering all factors is both wrong and unjust to his devoted caregivers.”
It’s certainly true that developmentally disabled persons, like anyone else, can injure themselves, although the extent of Paul Stanizzi’s injuries in this case points strongly toward the possibility of abuse. But even if it turns out to be the case that Paul Stanizzi somehow injured himself, what does that then say about the staffing and management of the group home? If Attaliades believes that the scenario under which Paul injured himself lets her agency and the residence entirely off the hook in this case, we think she’s mistaken.
DDS regulations require that facilities funded for the care of the developmentally disabled must be safe environments. We hope the Bedford police and the Disabled Persons Protection Commission are asking questions to determine just how safe this particular environment could have been. Did Paul haven a history of self-injurious behavior? If so, how carefully was he supervised? How long was he lying on the floor before he was discovered? Was he physically capable of injuring himself to the extent described? Were background checks done on all of the staff there? What kind of training was provided to the staff?
An online DDS licensing report on the Edinburg Center states that Edinburg’s two-year license to operate residential group homes was being “deferred” because of problems with medication administration. Other problems were noted in the report that required a 60-day follow-up by DDS, although there were no references to specific problems with abuse or neglect there.
The licensure report also stated that Edinburg had been experiencing growth since 2008 and yet was “dealing with economic decline and its ongoing impact on agency services.” The report added that the provider had lost clinical and emergency services and yet had opened two new 5-person homes in FY 2010. It seems strange that a provider would be cutting services and yet opening new homes at the same time.
Opening new facilities at the same time that services are being cut may indicate that this provider may be stretched thin on its staffing, or was stretched thin as of December 2010. (The posted licensure report was dated December 2010, which would make it about 9 months out of date. DDS licensure reports and operating licenses are valid for two years, meaning that a new report should have been posted on the website in December 2012. We have pointed out in the past that many of the licensure reports posted on the DDS website are out of date.)
Fox25 stated that Attaliades, the Edinburg CEO, told them that Paul Stanizzi is considered “part of The Edinburg Center family and his health and well-being are their primary concern.” We hope that is the case, but a thorough investigation is the only way to be at all certain of that.
We and others have long pointed out that care in widely dispersed group homes in this and other states is very difficult to monitor. Earlier this year, U.S. Senator Chris Murphy of Connecticut called for a federal investigation “into the alarming number of deaths and cases of abuse of developmentally disabled individuals in group homes.” Unfortunately, the Massachusetts DDS, in particular, does not appear to have placed a high priority on the safety of the provider-run care system that the Department funds.
The community-based, group home system in Massachusetts needs to be more tightly overseen, and the experience of Paul Stanizzi is one more in a long line of disturbing incidents that demonstrate that need.
Massachusetts lags in criminal background checks for caregivers to disabled
While the Patrick administration appears to support national criminal background checks for people hired to care for the intellectually disabled, the administration has failed to apply for federal grant funding that would help it design a federal background check program.
The administration also does not seem to have aggressively pursued proposed legislation in Massachusetts that would authorize national background checks of people hired to work in the Department of Developmental Services system.
This is an administration that has been nothing short of enthusiastic about closing state-run care facilities and moving the residents in them to community-based group homes. But as far as protecting those people from abuse and neglect in the community system is concerned, the administration’s level of enthusiasm seems to drop off sharply.
National background checks involve matching a job applicant’s fingerprints against a federal database maintained by the FBI. This table I compiled shows how each state compared as of 2008 regarding national background check requirements, and which states have taken advantage of federal grant funds available since 2010 to design a national background check program.
As the table shows, Massachusetts was one of 16 states as of 2008 that had no national background check requirements. (The information is based on a survey by the National Conference of State Legislatures.) It is still the case today that Massachusetts requires only in-state criminal background checks of people hired to work in the DDS system.
As the table also shows, Massachusetts is among as many as 27 states that haven’t applied for the grants that have been available from the Centers for Medicare and Medicaid Services under the Affordable Care Act “to design comprehensive national background check programs for direct patient access employees.” A total of 23 states and Puerto Rico have been awarded a total of $53.4 million in those grants, which have been as high as $3 million per state.
Every advocacy group for the disabled that I know of agrees that state-only background checks are not sufficient in screening applicants seeking jobs in caring for the disabled because those checks turn up only convictions for criminal activity in that state. The checks do not identify criminal convictions that a job applicant might have from another state.
In testimony to the state Legislature’s Judiciary Committee last month, State Representative Martin Walsh stated that the state Disabled Persons Protection Commission had identified 1,000 cases in which “criminal abusers” were working in Massachusetts, and that one out of five of them had come from outside the state.
I contacted the Massachusetts Executive Office of Health and Human Services and the Department of Developmental Services regarding the federal grant program, and received a response from Victor Hernandez, a deputy assistant DDS commissioner. Hernandez stated in an email that the state has not applied for a CMS grant because Rep. Walsh’s legislation authorizing national background checks by DDS is not yet in place. Once such legislation is enacted, Hernandez wrote, “we will pursue the federal dollars.”
That sounds reasonable enough except that under the grant rules, the state is not obliged to wait for enactment of a national background check statute before receiving the funding. In an online FAQ about the grant program, the CMS states that in cases in which “necessary state legislation is not in place prior to the start of the grant period,” CMS would “work with the state to identify a portion of the potential grant funds that would be available immediately and additional funds that may be available at a later time when the additional authority is in place.”
I also received an email from CMS, which stated that there are a number of states “that have been in the (national background check grant) program for several years and have yet to be successful in implementing state laws.”
I wrote back to Hernandez to ask if the Patrick administration has worked with CMS to identify a portion of the grant funds that might be immediately available to the state. I haven’t yet heard back.
It’s not only the administration that can’t seem to get excited about protecting the developmentally disabled from abuse and neglect. The Legislature as a whole doesn’t seem to have an attitude that is much different in that regard.
As I’ve previously noted, Walsh’s proposed national background check legislation for new workers in the DDS system has been stalled for a number of years in the Legislature. Last year, the Legislature did pass a bill to implement a national background check requirement for people hired to work in public and private school systems in the state. Massachusetts, however, was reportedly the last state in the nation to enact a national background check for school personnel.
This year’s national background check bill for DDS system workers (H. 1674) was filed by Walsh in January and referred to the Judiciary Committee at that time. The committee only got around to holding a public hearing on it on July 9, and still has not acted to approve the measure.
Walsh noted in his testimony to the Judiciary Committee that his bill had been approved twice in the past two years by that committee only to be sent to the House Ways and Means Committee to die a slow death.
That the developmentally disabled are subject to abuse and neglect in the community system of care is hardly disputed by anyone who looks at the matter objectively. The VOR has cited an “alarming number” of deaths and cases of abuse of developmentally disabled individuals around the country, and noted the “prevalence of preventable deaths at privately run group homes across this nation.” Community-based care, which is primarily delivered in widely dispersed group homes, is by definition harder to monitor and oversee than care delivered in larger congregate-care settings.
But whether abuse, neglect, or misappropriation of funds occurs in the privatized or state-run systems of care, the federal CMS has recognized those three issues as “a widespread problem for millions of Americans receiving LTC (long-term care) services.”
Let’s hope that both the Patrick administration and the state Legislature begin soon to place a higher priority on finding a solution to those problems. The administration could show it is placing a priority on addressing abuse and neglect, at least, by applying immediately for a CMS grant to design a workable national background check program in Massachusetts; and the Legislature could begin by acting as quickly as possible to pass Rep. Walsh’s national background check bill.
Making care for the disabled a zero-sum game
There is no question that Massachusetts is facing budget problems that are making it increasingly difficult to fund services for our most vulnerable citizens, particularly those with intellectual and other disabilities.
One thing we shouldn’t do in this situation, though, is try to help one group at the expense of another. That, in our view, is what two pieces of proposed legislation now before the Children, Families, and Persons with Disabilities Committee would do.
Both bills were the subject of a public hearing last week before the committee. I wanted to testify about both of them, but they were way down on the committee’s hearing list. After waiting two and a half hours to testify and then realizing by that time that almost all of the legislators on the committee had left, I left the hearing without testifying publicly and submitted my remarks in writing to the committee staff the next day.
I’ve already written several times about one of these two bills – the ‘Real Lives’ bill (H. 151), though not specifically about how it would potentially divert funding from intellectually disabled people living in state-operated group homes to corporate providers that contract with the Department of Developmental Services. I’ll get to that in a bit.
Early on in last week’s hearing, I first found out about the other bill, which was filed by state Representative Tom Stanley at the behest of the Association of Developmental Disabilities Providers (ADDP), the lobbying organization for those same state-funded, corporate providers.
Stanley personally appeared before the Children and Families Committee to promote the ADDP bill (H. 156), which would require that at least half of the “savings” in closing state-run DDS developmental centers be used to fund programs run by corporate providers. (Legislators don’t have to wait to testify at committee hearings, but are given the floor when they show up.)
Specifically, Stanley’s bill would require that “not less than 50 percent” of those developmental center closure “savings” be used to “fund and implement Chapter 257 of the Acts of 2008.”
What is Chapter 257 of the Acts of 2008? As the ADDP notes, it is a statute that provides for “standardization and adjustment for rates to contracted human and social service providers.” In other words, it’s intended to adjust state payments to the group home providers upwards. Last January, the ADDP was anticipating that the administration would provide up to $175 million in funding in the current-year budget to implement Chapter 257.
As the ADDP put it on their website:
After waiting for nearly 25 years, developmental disability programs (read “the providers”) may finally see their prayers answered with Governor Deval Patrick’s FY 14 House One Budget….
An administration document posted by the Providers’ Council, another provider lobbying group, last January indicated that the governor had proposed that at least $53 million in Chapter 257 funding go directly to the provider residential line item in the DDS budget in the current fiscal year.
The ADDP’s and the Providers’ Council’s prayers, however, were apparently not fully answered. The total proposed Chapter 257 funding apparently did not materialize in the final budget for the current fiscal year. The provider residential line item in the final budget, as approved by the Legislature, is $13.1 million less than what the governor proposed in January.
In a July 2 recap of the final FY 14 budget, the Arc of Massachusetts, a close ally of the ADDP and the Providers’ Council, stated that the organization was hoping for passage of a supplemental budget this year “to fully implement Chapter 257 in Residential Services for 2014.”
But what if such a supplemental budget is not forthcoming? Maybe that explains the need for Rep. Stanley’s bill. Because the Legislature was apparently not willing to put the amount of additional money into the provider group home line item that the ADDP, the Providers’ Council, and the Arc were seeking, the ADDP figured they could get it from somewhere else. That somewhere else is apparently the developmental center closure “savings.”
While we would dispute that there has actually been any savings in closing the developmental centers, what has occurred is that the developmental center line item in the DDS budget has been cut by some $80 million since FY ’09, when the administration first announced it planned to close four of the centers.
It seems the funding cut from the developmental center line item has gone in the past five years to the state’s General Fund, rather than being plowed back into the provider-run, community-based system, as the administration had originally promised. However, at least some of that money has been transferred back from the General Fund to both the state-operated and provider-run group home accounts.
As the developmental centers have been closed, a large percentage of the former residents has been moved primarily to one of two remaining developmental centers and to state-operated group homes. The state-operated group home line item has thus been increased by about $41 million since FY ’09, largely to accommodate that influx of residents. The provider-run group home line item has been increased by some $230 million in that time.
So, now we have Rep. Stanley’s bill, which says, as we understand it, that at least 50 percent of the funds cut from the developmental centers must be directed to fund Chapter 257. Given that passage of this bill would result in a significant increase in funding for the providers (or else why would the ADDP want this bill filed?), what does that mean for the state-operated group homes? There is only a finite pot of money involved. Funding for the state-operated group homes would potentially have to be cut.
We know that the state-operated residential facilities are struggling in Massachusetts. These facilities are required under court order to provide care for most former developmental center residents that is equal or better to the care they previously received. Although funding has been increased to the state-operated group homes, the increase this year was significantly less than what the administration projected was needed.
These are among the questions I posed in a phone call on Thursday to Rep. Stanley. In filing his bill on behalf of the ADDP, did he understand the full implications for the state-operated group homes, in particular, and the level of services the residents in them would continue to receive?
Stanley responded that he believed his bill would “help both the state-operated and provider-operated group homes.” He said it was his understanding that Chapter 257 would boost funding to most, if not all, DDS line items and that he would get back to me to confirm that. I’m waiting for his follow-up call.
As I noted to Stanley in an email following our Thursday phone call, there are many documents online about Chapter 257, and they indicate, as I’ve noted above, that Chapter 257 was intended and drafted to fund purchase-of-service programs only, not state-operated programs.
For example, there is that administration document posted by the Providers’ Council, linked above, which shows the proposed $53 million in Chapter 257 funding going into the provider residential line item in the DDS budget. While some of the Chapter 257 funding would go to other agencies in the Executive Office of Health and Human Services, nothing in the document indicates that any of the Chapter 257 funding would go toward the DDS state-operated group homes. Chapter 257 is clearly targeted toward contracted services obtained from corporate providers to DDS and other EOHHS agencies.
So, how much money are we talking about in diverting 50 percent of the funding cut from the developmental centers to the providers? In the current fiscal year, it appears the developmental center line item has been cut by $10.8 million from the previous fiscal year. Fifty percent of that figure would be $5.4 million.
As noted above, the final FY 14 budget provided $13.1 million less in funding for the provider residential line item than did the governor’s budget proposal. Thus, if Rep. Stanley’s bill is passed, it would seem the providers would get back some $5.4 million – or about 41 percent – of the amount the Legislature had cut from the governor’s proposal in the current fiscal year. Not the whole ball of wax, but it would reduce the amount that would be needed in that hoped-for supplemental budget to satisfy the providers.
It turns out, though, that Rep. Stanley’s bill was not the only piece of legislation heard by the Children and Families Committee last week that would divert funding from the developmental centers to the providers. There’s also the Real Lives bill, proposed by Rep. Tom Sannicandro. While I was there, a long line of legislators testified in favor of that measure, which is intended to give all DDS clients more choice in services. The Real Lives bill happens to state that 40 percent of the “savings” in closing at least three of the developmental centers must be directed to a fund that would support “self-directed services,” presumably for all DDS clients.
As I’ve previously pointed out, the Real Lives bill specifies a large role for the providers in establishing that self-directed services fund. And one of the purposes of the fund would be to subsidize providers who lose funding when their clients leave their facilities for facilities run by other providers.
So, between these two bills (proposed by Reps. Sannicandro and Stanley), it would seem that at least 90 percent of the funding cut from the developmental centers would be earmarked for specific funds or line items that would help the providers, in potential competition with the state-operated group homes and other DDS accounts. Ninety percent of the $10.8 million cut from the developmental center line item in the current fiscal year totals roughly $9.7 million. Now, we’re talking about the providers getting back $9.7 million – or almost three quarters – of the amount the Legislature had cut from the governor’s proposed funding for provider-run group homes.
To be clear, we support adequate funding of provider-run group homes and thus we support full funding of Chapter 257. But we don’t support that funding increase coming at the expense of the state-operated group homes or other DDS line items. Robbing Peter to pay Paul should not be the solution to the problems the administration is facing in providing care to everyone who needs it.
State-run facilities being asked to do more with less
State-operated care appears to be in increasing fiscal trouble in Massachusetts even though that type of care remains the choice of many families, including those whose loved ones have been transferred from developmental centers in recent years.
Unfortunately, the Legislature seems to be either unaware of the situation or simply doesn’t care about it.
The Patrick administration appears to be relying on state-operated residences and two remaining developmental centers to care for a large number of former residents of four developmental centers targeted for closure in 2008.
As a result, funding for state-operated residences was increased by about 17 percent between Fiscal Year 2010 and the current fiscal year. However, funding for the developmental centers has been cut in that time by the same percentage, according to the Massachusetts Budget and Policy Center’s interactive Budget Browser.
An analysis of the Budget Browser numbers by COFAR shows that as a result of the drop-off in developmental center funding, total funding for state-operated care in the Department of Developmental Services system has actually declined slightly in inflation-adjusted numbers since FY 2010.
We’ve previously noted that the funding previously provided to the developmental centers in the budget doesn’t appear to have been transferred to most community-based budget accounts. However, during that same period from FY 2010 to 2013, funding for corporate, provider-operated group homes did increase by roughly 6 percent.
It appears that the relative decline during that period in funding for state-operated care is putting strain on the state system. DDS Commissioner Elin Howe projected in April that two to three state-operated group homes might be forced to close if the governor’s proposed $7.8 million increase in funding for those residences for the coming fiscal year wasn’t approved.
Yet, in April and May, the House and Senate chose to cut the governor’s proposed increase for state-operated group homes, and made larger cuts than the governor proposed in the developmental center account. While lawmakers subsequently approved budget amendments to increase funding for some community-based accounts, administration-supported amendments to restore funding for both state-operated group homes and the remaining developmental centers were rejected by the House and Senate.
Currently, a House/Senate conference committee is considering how big a cut to make in the governor’s budget for state-operated group homes. The conference committee must decide between the House budget, which would cut the governor’s proposal by $1.9 million, and the Senate budget, which would cut it by $1.5 million. COFAR has been seeking adoption of the Governor’s budget recommendations in the state-operated group home and developmental center accounts.
We intend to ask DDS for data on the number of former developmental center residents who have opted for state versus provider-operated care. The administration projected in 2008 that state-operated group homes and two remaining developmental centers slated to remain open would accept close to 50 percent of the roughly 400 residents then remaining in four developmental centers targeted for closure. Provider-operated group homes were projected to accept the remaining 50 percent of those former developmental center residents, yielding these entities millions of dollars of additional revenue.
In the current fiscal year, funding for state-operated group homes and developmental centers comprises about 23 percent of the DDS’s total $1.4 billion budget, compared with funding for privately run group homes, which comprises 57 percent of the DDS budget.
The administration has claimed for a number of years that it is committed to a “Community First” agenda of boosting funding for corporate group homes and other community-based initiatives. That’s all well and good; but if the administration is continuing to rely on state care, particularly for those with the most severe and profound levels of intellectual disability, we hope the Legislature will agree to fund that care adequately.
DDS online licensure data remains out of date
We’ve raised a number of questions over the past year about the thoroughness and effectiveness of the state’s policies and procedures for inspecting and licensing group homes for people with intellectual disabilities. (See here and here.)
Unfortunately, we were unsuccessful in persuading the Legislature’s Children, Families, and Persons with Disabilities Committee to hold a hearing on the issues we raised.
But in response to our concerns, the Department of Developmental Services did indicate it was making efforts to update group home licensure reports on its website that we found were sometimes years out of date.
These licensure reports provide both information about the results of inspections of the vendors’ group homes and the type and duration of the license or licenses each vendor has been granted. The licenses are normally granted for two-year periods, so any such licensure reports that are more than two years old are, by definition, out of date.
In May of this year, DDS Commissioner Elin Howe stated in a letter to Representative Kay Khan, co-chair of the Children and Families Committee, that in addition to updating the licensure reports on the DDS website, licensure follow-up reports were being posted as of that time showing the outcomes of deficiency findings in the original reports.
As a result of these assurances from DDS, we went back and took another look this week at the online DDS licensure data for the same sample of 30 group home vendors that we first examined more than a year ago.
Based on the follow-up we’ve just done, it appears that DDS has taken some steps to update the licensure information on its website; however, much of the information still appears to remain out of date. Of the same 30 providers, licensure reports for 11 were still out of date as of this week, and one report (for the Merrimack Education Center) was no longer posted. That’s now 40 percent of the sample with out of date or missing reports.
Also, the promised follow-up licensure reports or updates were posted for only eight of the 30 vendors in the sample. (See table below with the latest results of our review of the DDS online licensure reports for our vendor sample.) No follow-up reports were posted for any of the 44 vendors listed on the website in the Metro Boston area.
In addition, the licensure reports posted on the DDS website for Behavioral Associates of Massachusetts (BAM) and the Center for Human Development (CHD) — two vendors that we selected for review — remained out of date this week, and no follow-up reports or updates were posted for either vendor. The BAM licensure report was dated April 2009 and the CHD report was dated November 2010.
We had reported in our April 2012 newsletter that DDS didn’t appear to have followed up on numerous deficiencies noted in the BAM and CHD licensure reports. As we noted in the newsletter article, a subsequent licensure report for BAM, dated May 2010, addressed some, but not all, of the licensing deficiencies identified in the previous April 2009 report.
Yet, that same April 2009 document was still the only licensure report for BAM that was posted on the DDS site as of this week. We had received the subsequent May 2010 licensure report from DDS in February of this year in response to a Public Records request. By the way, even that May 2010 report would have been out of date by now had it been posted on the DDS site.
Similarly, the November 2010 licensure report for CHD is now out of date because the two-year license for the vendor was listed in that report as valid through October 2012.
As we reported in the same April 2012 newsletter article, the November 2010 CHD report had cited the vendor for failing to report three incidents of abuse or neglect to the state Disabled Persons Protection Commission. In response to our same Public Records request, we received a follow-up report on CHD, dated December 2010, in February. Yet, as of this week, that December 2010 follow-up report had not been posted on the DDS site.
We sent an email message to DDS Commissioner Howe asking why it is taking so long to replace out-of-date licensure reports on the DDS website and why so few follow-up reports appear to have been posted. We cc’d Rep. Khan’s general counsel on the message. So far, we haven’t heard back from either Howe’s or Khan’s offices.
Results of COFAR review of DDS online group home licensure reports as of the week of November 5, 2012
| DDS Vendor | Date of licensure report posted online | Status of posted report | Follow-up reports or updates posted |
| Central-West Region | |||
| Aditus, Inc. | July 2011 | Current | None |
| Behaviorial Health Network, Inc. | October 2011 | Current | None |
| Center for Human Development, Inc. | November 2010 | Out of date | None |
| Evergreen Center, Inc. | May 2010 | Out of date | None |
| Independent Living for Adults with Special Needs, Inc. | September 2010 | Out of date | None |
| Mass Mentor | January 2012 | Current | None |
| Nonotuck Resource Associates, Inc. | April 2012 | Current | May 2012 |
| New England Center for Children, Inc. | March 2011 | Current | None |
| Seven Hills Foundation, Inc. | October 2011 | Current | November 2011 |
| Western Mass. Training Consortium, Inc. | May 2010 | Out of date | None |
| Northeast Region | |||
| American Training, Inc. | December 2009 | Out of date | November 2011 |
| Central Middlesex Arc, Inc. | September 2008 | Out of date | None |
| Fidelity House, Inc. | April 2012 | Current | July 2012 |
| Merrimack Education Center | No report posted | Unknown | August 2011 |
| Minuteman Arc for Human Services, Inc. | July 2008 | Out of date | None |
| Project Cope, Inc. | June 2011 | Current | August 2011 |
| Southeast Region | |||
| Arc of Cape Cod, Inc. | March 2011 | Current | None |
| Behavioral Associates of Mass., Inc. | April 2009 | Out of date | None |
| Cardinal Cushing Centers, Inc. | May 2012 | Current | None |
| Cerebral Palsy of Mass., Inc. | June 2011 | Current | September 2011 |
| Kennedy Donovan Center, Inc. | October 2010 | Out of date | November 2010, August 2011 |
| Road to Responsibility, Inc. | June 2008 | Out of date | None |
| Work, Inc. | November 2007 | Out of date | None |
| Metro Boston Region | |||
| Charles River Arc, Inc. | May 2011 | Current | None |
| Delta Projects, Inc. | August 2011 | Current | None |
| Justice Resource Institute, Inc. | August 2011 | Current | None |
| North Suffolk MHA, Inc. | April 2011 | Current | None |
| Till, Inc. | August 2011 | Current | None |
| Vinfen, Inc. | December 2010 | Out of date as of Nov. 8, 2012 | None |
| Walnut Street Center, Inc. | May 2012 | Current | None |
Rep. Haddad endorses independent study for Glavin Center
House Speaker Pro Tempore Patricia Haddad, who just spearheaded a successful effort to block the immediate closure of Taunton State Hospital, supports undertaking an independent study prior to the closure of the state-run Glavin Regional Center in Shrewsbury for persons with intellectual disabilities.
Speaking at a meeting Tuesday at the State House attended by Glavin family members, legislators and their staffs, and officials of the Department of Developmental Services, Haddad said the independent study should cover “the entire DMH (Department of Mental Health) and DDS system.”
“Someone has to be the first to say we’re not afraid to have an outside study done to tell us what’s wrong and what’s right,” Haddad said. She maintained that internal studies done by the administration that showed a savings in closing Glavin and other developmental centers in Massachusetts “are asking people to trust the results.”
The Tuesday meeting was organized by Republican Representative Matthew Beaton, whose Shrewsbury-based district is home to Glavin. In 2008, the Patrick administration targeted the Glavin, Fernald, Monson, and Templeton developmental centers for closure as of the end of the current fiscal year.
Fernald has remained open pending the outcome of appeals filed by the guardians of 14 remaining residents. The Monson center was officially closed last month.
During the Tuesday meeting, I pointed out on behalf of COFAR that the planned closures of the four developmental centers will leave only two locations in Massachusetts for federally regulated Intermediate Level Facility (ICF) care. Those remaining facilities are located in Danvers in the northeastern corner of the state, and Wrentham in southeastern Massachusetts. The administration has deferred a decision on whether to close the Danvers facility.
During the meeting, Will Dumont of Brookfield, the father of a resident of the centrally located Glavin Center, said it would be much more difficult to regularly visit his son if he were transferred hours away to Wrentham.
Sheila Bailey, another family member, said her brother had suffered abuse in a facility that he had lived in prior to coming to Glavin. “It was like a cloud was lifted when he got to Glavin,” Bailey said. “He finally had a life there.”
Beaton maintained that Al Bacotti, a former director of the Glavin Center, who has taken an active role in opposing its closure, maintained to him that in the next 10 to 15 years, the loss of the ICF-level care provided by facilities such as Glavin will force the state to rebuild them.
DDS Deputy Commissioner Larry Tummino said he did not dispute that the services at Glavin are excellent. He contended that “we can structure that clinical expertise in the community.” Tummino also maintained that guardians of some 31 residents at Glavin have agreed thus far to move those residents to other locations.
That latter claim from Tummino brought a sharp rebuke from Roland Charpentier, the president of the Glavin family association. Charpentier said the guardians who agreed to leave Glavin did so “because they were scared to death that Glavin is going to close.”
Haddad also was critical of the administration’s contention that the services provided by facilities such as Glavin and Taunton state can be replicated in the community system. “There are more horror stories than good stories in the private sector,” Haddad said. “You’re asking people to trust a system that has a lot of flaws,” she said to Tummino and a second DDS official who attended the Tuesday meeting.
“This is not something you can just say ‘it’s going to be okay,” Haddad added.
Haddad said she was nervous about what the independent study approved for Taunton State Hospital might conclude, but that she believes the outcome will be support for “a continuum of care” in the mental health system that would include Taunton State.
Speaking specifically about the plan to close Glavin, Haddad maintained that it is harmful to remove intellectually disabled people from their longtime homes. “People cling to the people and things that they know,” she said.
Trial in DDS abuse case caps two years of frustration
Sheila Paquette’s two-year quest to obtain justice in the alleged assault of her intellectually disabled brother came to a crushing end on July 30 as a jury in Falmouth District Court took less than half an hour to acquit the alleged assailant.
We have no desire to use the media to convict the man who was found innocent in this case. What we do want to point out here is how this case illustrates the nonstop frustration that intellectually disabled victims of crimes and their advocates are likley to encounter as they deal with a bureaucratic system that is supposedly intended to help them. In reality, it does nothing of the sort.
Here is a reprint of my op-ed on this case, which ran on Sunday in The Springfield Republican:
Viewpoint: State must protect its most vulnerable
By David Kassel
The jury did its job on July 30 in a trial of a care giver in a West Springfield group home who was alleged to have assaulted an intellectually disabled man more than two years ago in Falmouth on Cape Cod.
But did the government do its job? After less than half an hour of deliberation, the jury acquitted John Saunders of assaulting John Burns while they were on a weekend trip to the Cape from the group home operated by the Center for Human Development.
Burns suffered two black eyes and other injuries in the alleged assault.
Certainly, this was a difficult case to prove. The key witness was an intellectually disabled man who is Burns’ roommate in the West Springfield residence. When the case finally did come to trial on July 30, the witness’s account of the alleged assault had substantially changed.
What concerns us about this case is not the outcome, however, but rather the overall performance of the District Attorney’s office and other agencies entrusted with the protection of some of the most vulnerable members of our society.
Those agencies did not appear to demonstrate a strong commitment to working together in pursuit of justice for the alleged victim.
For instance, Sheila Paquette, of Westfield, Burns’ sister and guardian, ultimately ended up filing the assault charge against Saunders herself in July 2010 when she became convinced no law enforcement agencies were going to do so.
It was only after she filed the charge that the state Disabled Persons Protection Commission sent a state trooper to her house to investigate, she said.
After that, the case languished for months at a time, beset by bureaucratic snafus and witness no-shows that caused the trial to be postponed four times.
When the trial finally took place, the D.A.’s prosecution effort seemed half-hearted. Among other questions we have was why no one from the DPPC or its state police unit was called to testify at the trial.
The DPPC had issued a comprehensive report on the incident in February 2011, which found sufficient evidence to conclude that Burns was “seriously injured” by Saunders.
Assistant Cape & Islands District Attorney Kerry Whalen, who headed the criminal investigation of the case, contended to us that any testimony given by either the DPPC or state police investigators in the trial would have been considered hearsay because those investigators had not interviewed Saunders.
The DPPC report, however, stated that a DPPC investigator did interview Saunders by telephone. It is concerning to us that there appears to be no communication process in place to ensure that DPPC investigators testify in criminal proceedings such as this case.
Moreover, even if testimony from the DPPC would have been considered hearsay, that would raise a further question about the D.A.’s performance.
Why did none of the staff of Burns’ group home testify at the trial, other than Saunders and one other caretaker who had been on the Cape Cod trip?
The DPPC report stated that other staff in the West Springfield residence had observed Saunders to be “speaking in a derogatory manner” about Burns in his presence later on the day of the alleged assault. This never came out at the trial either.
If nothing else, this case has shown that there is a potentially serious lack of communication and cooperation between the key agencies that are charged with protecting the safety of some of our state’s most vulnerable citizens.
It also raises the question for us whether prosecutors take criminal cases involving abuse and neglect of disabled persons seriously enough.
We hope lawmakers and other policy makers will consider changes that are badly needed to ensure that the disabled in Massachusetts have adequate access to justice when crimes are committed against them.
(More information about the July 30 trial in this case and the questions it raises can be found in the August 2012 issue of The COFAR Voice newsletter and a special August edition of The Advocacy Network News, the newsletter of the Advocacy Network, a COFAR member organization.)
What do the academic studies say about community-based care?
A review of the literature
Introduction
In the past two decades, there has been a major shift around the country in care for the intellectually disabled, as tens of thousands of people have been moved from larger congregate facilities to community-based group homes.
(Since congregate facilities, also known as Intermediate Care Facilities for the developmentally disabled (ICFs/DD), are generally referred to as institutions, I will use that latter term here, despite its negative connotations.)
This shift in care, accompanied by a large-scale privatization of residential and other services, has engendered much debate among policymakers and advocates for the disabled.
That debate has played out for close to two decades in Massachusetts, as governors from Weld to Romney to Patrick have moved to close state developmental centers and place their residents in a mix of public and privatized facilities. While the Patrick administration has, in many cases, moved people from facilities slated for closure to the Wrentham Developmental Center, the administration has stated that its ultimate goal is to move people to community based care.
In a statement in 2007 announcing the decision to close the Fernald Developmental Center, the first of four such centers that the administration has targeted for closure, Secretary of Health and Human Services JudyAnn Bigby stated the following:
The state’s decision (to close Fernald) is consistent with a national shift away from institutional care in favor of community living. Decades of research indicate that community settings offer people with mental retardation the best care available and the highest quality of life. The Patrick Administration believes that community living is the best environment in which to ensure family connections, service access, education, training employment and full inclusion for people with mental retardation.
Has the deinstitutionalization effort been an unqualified success, and does academic research support that claim?
I reviewed academic research on the topic of deinstitutionalization of the intellectually disabled. Much has been written in scholarly journals on this topic in the past 20 years, and I think it would be safe to say that the writers of those articles have given out both good and bad grades on the impact of deinstitutionalization on the well-being, health and longevity of the people involved.
Specifically, the studies I reviewed found that:
- Many people who were deinstitutionalized did indeed experience improvements in the quality of their lives and adaptive skills after being transferred to community-based group homes.
However, many of those same studies reported that:
- Many deinstitutionalized people have encountered a lack of adequate medical care in the community system, and quality of life and adaptive skills often did not improve for those who had the most profound levels of disability or who were older.
I’ll first discuss the studies I reviewed on the well-being of deinstitutionalized persons and then will discuss an academic controversy over a study that found a higher death rate among people who were deinstitutionalized in California than what would have been expected in the institutions they were moved from. (A list of the articles I reviewed can be found at the end of this post.)
Quality of life studies on deinstitutionalized persons
One of the more comprehensive reviews I was able to find of well-being or quality-of-life studies of deinstitutionalized persons was a 2011 article by Monali Chowdhury and Betsey Benson in The Journal of Policy and Practice in Intellectual Disabilities.
Chowdhury and Benson reported that their review indicated that relocation from institutions to community-based settings had a “general positive impact on life quality of participants.”
At the same time, Chowdhury and Benson stated that many of the studies they reviewed found that “improvements were most prominent shortly after the move and plateaued after a year.” While some studies showed gains in adaptive behavior in former institutional residents who had been moved to the community, they wrote, other studies “have shown neither significant increase in adaptive skills nor the maintenance of modest gains when moving to community group homes.”
Chowdhury and Benson also reported that in a number of studies, “participants continued to have low levels of community integration,” and there was “some evidence that healthcare needs might not be adequately met in the community.”
A 2007 article in Current Opinion in Psychiatry by J. Beadle-Brown et al. contained the following summation of the academic literature on deinstitutionalization of the intellectually disabled:
Work on deinstitutionalization continues to show that outcomes are better in the community than in institutional care, but recent papers highlight that there is more to deinstitutionalization than just hospital closure. Just moving people out of institutions into community settings does not bring about automatic improvement in quality of life in terms of choice and inclusion as well as self-identity and access to effective healthcare and treatment. This is especially true for people with more severe intellectual disabilities as well as complex needs such as challenging behaviour.
Among the other studies I reviewed that drew similar conclusions that transfers from institutional to community care were often but not always successful was a 2010 overview of research by Patricia Noonan Walsh et al. in The Journal of Policy and Pratice in Intellectual Disabilities.
Citing what they termed “post-deinstitutionalization” studies that they had reviewed, Noonan Walsh and her colleagues stated that these studies provided “consistent evidence for greater choice, self-determination, and participation in community-based activities in smaller settings, but no evidence for greater physical health or material well-being…”
In addition, a 1998 study in the journal Mental Handicap Research by Andrew Bratt and Rob Johnston of five intellectually disabled adults who had left a hospital to live in a “bungalow” in Exeter, England, concluded that while the staff considered the group as whole to be better off after the move:
…little evidence of integration being achieved within the local community was recorded; and there was little or no evidence of individuals being supported in ways that increased their competence, particularly in relation to participating at a simple level in routine domestic tasks.
Perhaps one of the reasons for the discordant findings among many researchers over the impact of deinstitutionalization is the difficulty in measuring that impact. That difficulty may have contributed to the disagreement among many policymakers and advocates as to whether deinsitutionalization has been beneficial or not.
Chowdhury and Benson noted that many of the studies they reviewed on deinstitutionalization relied on interviews with intellectually disabled persons to determine quality-of-life differences between institutions and group homes. However, other studies have found, they stated, that these interviewing techniques can be compromised by “response biases,” which “can seriously damage the reliability and validity of self-report data on subjective QoL (Quality of Life) in individuals with ID (intellectual disabilities).”
One 2000 study, for instance, by Jonathan Perry and David Felce in Mental Retardation, reported that two thirds of the respondents in a sample of 154 adults with intellectual disabilities were either unable to respond to questions in a structured interview about their quality of life or exhibited response bias. The authors noted that the most common form of response bias among people with intellectual disabilities is “the tendency to acquiesce, that is, to say yes to questions regardless of their content” (emphasis in the original).”
Chowdhury and Benson further noted that given those problems with response bias, “a knowledgeable proxy,” such as a staff member or parent, is often asked to respond on behalf of an intellectually disabled person to quality-of-life survey questions. However, they stated using such proxies is “usually not seen as an accurate substitute” for measuring QoL of people with ID.”
The California mortality study controversy
A major area of disagreement among academic researchers appears to center around attempts to determine whether moving intellectually disabled persons out of institutions causes them to die earlier than they would have had they stayed in those facilities. This disagreement as well has spilled out into the policymaking and advocacy worlds.
I was was recently criticized, for instance, by a leading opponent in Massachusetts of developmental centers for the intellectually disabled for citing a one such mortality study on deinstitutionalization that had been done on residents who were moved from institutions to community group homes in California in the 1990s.
In a recent post calling for saving the Glavin Regional Center in Massachusetts from closure, I wrote that a 2005 paper by Robert Shavelle, David Strauss, and Steven Day in The Journal of Data Science, reported that the authors had analyzed data on more than 1,800 children and adults who had been dinstitutionalized in California between 1993 and 1996. The authors found that as of 1999, there were 81 deaths among those who had been transferred from institutions to community-based group homes. Using statistical regression, Shavelle et al. reported that the the death rate represented a 47 percent increase in mortality over that expected in institutions.
Shavelle and Strauss concluded that the increase in deaths appeared to reflect less intensive medical care and supervision available in the community.
I wrote the post on behalf of COFAR, a nonprofit organizaton that I consult for and that advocates on behalf of the intellectually disabled and their families.
COFAR, along with Strauss and Shavelle, were criticized by Gary Blumenthal, president of the Massachusetts Association of Developmental Disabilities Providers (ADDP), who wrote in a comment (under the user name “dcjayhawk”) to my post that:
COFAR…attempts to frighten families by telling them of higher mortality rates in community programs versus ICF (Intermediate Care Facility) programs by citing a flawed 1993-1998 California mortality study whose methodology and findings have been discredited by multiple expert researchers…
Blumenthal went on to cite four studies that he claimed discredited the work of Shavelle and Strauss. (More about that below.) The ADDP, which represents nonprofit operators of group homes in Massachusetts that contract with the state Department of Developmental Services, supports the closure of all remaining developmental centers in Massachusetts and the transfer of all of their residents to community-based group home programs.
The California mortality research of Shavelle and Strauss was also criticized by Connecticut Department of Developmental Services Commissioner Terrence Macy, who has stated that he wants to move residents out of the state-run Southbury Training School in Connecticut and into privately run group homes. In a recent letter to another client of mine, The Southbury Training School (STS) Home & School Association, Macy maintained that:
The California study is well over twenty years old. Its research methodology of contrasting deaths that occurred in the community to “those expected in institutions” is no longer a viable research methodolgy. I would doubt this research design would even be accepted for publication in today’s research periodicals. That study has been replaced with a large number of studies that have been conducted throughout the country over a long period of time. Many of these studies are longitudinal so by design they follow persons who have moved over extended periods. This significant body of rigorous studies has consistently concluded that persons who have transitioned out of institutions in fact have benefited from placement in the community.
But have the Shavelle study and earlier versions of it by Strauss really been discredited and are they really over 20 years old?
In answer to that second question, I would note that Strauss and co-author, Theodore Kastner, first published findings of a higher mortality rate among deinstitutionalized persons in California in 1996 in The American Journal on Mental Retardation. The article by Shavelle and Strauss, which I cited in my BMG blog post, was an update of the original study, and was published in 2005 in The Journal of Data Science. Thus, even Strauss’s earliest findings do not appear to be more than 16 years old, and the work done by him and his colleagues on this topic was accepted by a peer-reviewed periodical only seven years ago.
Strauss’s research website lists a total of 10 studies and one commentary on mortality issues associated with deinstitutionalization that he co-authored with a total of eight colleagues. Strauss himself is professor emeritus of statistics at the University of California, while Shavelle has been a visiting assistant professor at the University of California and has a Ph.D. in statistics. Kastner, a physician, has held associate professorships at the New Jersey Medical School and the Columbia University College of Physicians and Surgeons.
I reviewed all four of the studies cited by Blumenthal of the ADDP as having discredited Strauss’s methodology and findings. What I found is that, as with the studies on the quality of life of intellectually disabled persons, studies on mortality rates of people who have been deinstitutionalized often reach differing conclusions.
I also found that while three of the four studies cited by Blumenthal did dispute the mortality findings of Strauss and his colleagues in the 1990s in California, two of those three were largely respectful of Strauss’s work. (More about the exception below.) Strauss and his colleagues, as far as I can tell, have not been discredited. The fourth study cited by Blumenthal as having discredited Strauss’s California mortality studies actually did not directly address that topic at all.
I would also note that each of the studies cited by Blumenthal that did dispute the mortality findings of Strauss and his colleagues was done by researchers who disclosed consulting relationships with state agencies that had or were seeking to close developmental centers. In my view, those relationships raise questions about the independence of those studies.
As noted, only one of the articles cited by Blumenthal was actually overtly critical of Strauss et al. and their methodology. That critical article, titled “Commentary on the mortality issue,” by James Conroy and Miriam Adler, was published in the journal Mental Retardation, in October 1998.
In the commentary, Conroy and Adler cited a 1995 study they undertook on the transfers of residents from the Pennhurst Developmental Center in Pennsylvania, and stated that they had found a “sharply decreased risk of death when people moved from institution to community.” They termed Strauss’s 1996 finding of a higher death rate in the community system “utterly false” and compared it to the discredited discovery of cold fusion.
It should be noted that Kastner returned the favor, critiquing Conroy’s methodology in a number of papers, including a 2000 article in Mental Retardation concerning Conroy’s Pennhurst closure study. Kastner also co-authored a 2006 article with Kevin Walsh in the same journal, titled “The Hissom Closure in Oklahoma: Errors and Interpretation Problems in Conroy et al. (2003).”
In that 2006 article, Walsh and Kastner charged that the research of Conroy and his colleagues had been “seriously compromised by data collection problems and discrepancies between reported findings and those obtained when the analyses were replicated.”
Several of Conroy’s reports were also criticized in the 1990s by former staffers of the California Department of Developmental Services, according to the May 1996 issue of Outreach, a publication of the California Association of Psychiatric Technicians. The journal article, titled “Conroy Reports Controversy,” also stated that Philip Bondy, who is a former chair of Yale’s Department of Internal Medicine and a Southbury Training School Home & School Association Board member, was critical of a study done by Conroy on the outcomes of the closure of the Mansfield Training School in Connecticut.
Bondy emailed me that his criticism was based on Conroy’s reliance in the Mansfield study on quality-of-life interviews with attendants as proxies for former Mansfield residents who had been moved to community-based group homes. “There is no reason to believe that the attendants were unprejudiced,” Bondy wrote, “since they were employed in providing community care and might reasonably expect to give favorable answers. Although Conroy quoted statistics in support of his conclusions, I believe that they were based on faulty data,” he added.
Bondy is a former editor in chief of both The Journal of Clinical Investigation and The Yale Journal of Biology and Medicine.
Conroy’s resume indicates that he authored or co-authored hundreds of reports on the well-being of deinstitutionalized residents, most of which appear to have been submitted to state agencies running ICFs and community-based facilities or to entities such as the Institutional Closure Commission of Ohio. I think that may raise some questions about his independence in researching this issue.
A second article cited by Blumenthal as having discredited the work of Strauss and his colleagues on mortality rates in California was a 1998 study by Kevin O’Brien and E.S. Zaharia. The study, titled “Recent mortality patterns in California,” was published in the same issue of Mental Retardation in which the Conroy commentary was published.
The O’Brien and Zaharia study found no increased risk of death in the community for the same population that Strauss and his colleagues had studied. But far from discrediting Strauss’s results, O’Brien and Zaharia stated that the reasons for the discrepancies between the two studies were “unclear.” They acknowledged that due to validity prolems with databases used to analyze the number of deaths, “there may have been quite a bit of contamination in all of our analyses.”
In a separate commentary in the same issue of the journal (titled “Is it Life Threatening to Live in the Community?”), O’Brien and Zaharia stated: “We believe that the suggestions made by Strauss et al. (1998) (about closely monitoring initial placements of residents in community settings) should receive thoughtful debate.”
O’Brien and Zaharia disclosed in their papers that they were consultants to the California Department of Developmental Services.
A third study cited by Blumenthal as discrediting the Strauss studies was done by Paul Lerman, Dawn Hall Apgar, and Tameeka Jordan and published in in Mental Retardation in August 2003. This study did not find evidence that moving residents out of a developmental center in New Jersey and into the community caused more deaths. However, the authors concluded that the difference between their results and Strauss’s findings could be due to variations in policies in the two different states on deinstitutionalization or to differences in population characteristics.
Lerman et al. also noted several limitations to their own study, including limitations on the reliability of their behavioral variables. The study was hardly an effort to discredit Strauss and his colleagues.
The Lerman study, by the way, was funded by the New Jersey Division of Developmental Disabilities.
The final study cited by Blumenthal as discrediting the Strauss studies was actually concerned with the well-being of people transferred from nursing homes to community residences. The 1998 study, by Tamar Heller, Alan Factor, and Kelly Hsieh, in The American Journal on Mental Retardation, mentioned Strauss’s research in passing and was not in any way critical of it.
In a defense of their work, published in the same 1998 issue of Mental Retardation as the Conroy and O’Brien and Zaharia articles, Strauss and Shavelle maintained that they were not attempting to evaluate “the merits of institutional versus community living,” and were not arguing that persons living in the community should move or return to a state institution.” Instead, they said, “[o]ur concern was with the quality of health care and supervision currently available in the community.”
In that commentary, Strauss and Shavelle cited a Congressional subcommittee report, newspaper reports on avoidable deaths in California group homes, and a critical report on the community system in California by the federal Health Care Finance Agency as buttressing their findings.
Conclusion
This review of the academic literature on institutional versus community-based care for the intellectually disabled is admittedly far from exhaustive. But I think most researchers in this field would probably agree that I’m correct in concluding at least one thing about the research that has been done on this topic: That is that there is no clear consensus among scholars that either system of care is better in all respects for all intellectually disabled people.
Both of the advocacy organizations that I work for believe that the community-based system is appropriate and beneficial for the majority of people with intellectual and developmental disabilities. At the same time, both organizations also maintain that for a portion of this population with severe and profound levels of disability as well as those who who are older or have complicated medical conditions, institutions continue to play a vital role in their care.
Both COFAR and the Southbury Training School Home & School Association are nonprofit organizations that advocate for families and guardians of intellectually disabled residents of state-run facilities. Many of those facilities have been targeted for closure by state administrators who, in many cases, appear to believe that all intellectually disabled persons should live in the community system.
I hope this survey of the literature on this topic will persuade at least some of those administrators as well as legislators, policymakers, and others that those in the academic community, who have looked at this issue objectively and scientifically, have not reached a consensus that the community is better for everyone. Instead, the scholarly literature on this topic appears to support the contention that “one size doesn’t fit all.”
References for this post:
Beadle-Brown, J.; J. Mansell; and A. Kozma, “Deinstitutionalization in intellectual disabilities. Current Opinion in Psychiatry, 2007, 20(5):437-42.
Bratt, A. and R. Johnston, “Changes in life style for young adults with profound handicaps following discharge from hospital care into a ‘second generation’ housing project,” Mental Handicap Research, 1998, 1(1): 49–74.
Chowdhury, M., and B. Benson, “Deinstitutionalization and Quality of Life of Individuals With Intellectual Disability: A Review of the International Literature,” Journal of Policy and Practice in Intellectual Disabilities, 2011, 8(4): 256–265.
Conroy, J., and M. Adler, “Commentary on the mortality issue,” Mental Retardation, 1998, 36(5).
Cullen, C.; M. Whoriskey, K. Mackenzie, W. Mitchell, K. Ralston, S. Shreeve, and A. Stanley, “The effects of deinstitutionalization on adults with learning disabilities,” Journal of Intellectual Disability Research, 1995, 39(6): 484–494.
Heller, T.; A. Factor, and K. Hsieh, “Impact of age and transitions out of nursing homes for adults with developmental disabilities,” The American Journal on Mental Retardation, 1998, 103(3).
Kastner, T., “On the Need for Policy Requiring Data-Sharing Among Researchers Publishing in AAMR Journals: Critique of Conroy and Adler (1998),” Mental Retardation, 2000, 38(6): 519-529.
Lerman, P.; D. Apgar, and T. Jordan, “Findings of a Controlled Research Design in New Jersey,” Mental Retardation, 2003, 41(4): 225-236.
Noonan Walsh, P.; E. Emerson, C. Lobb, C. Hatton, V. Bradley, R. Schalock, and C. Moseley, “Supported Accommodation for People With Intellectual Disabilities and Quality of Life: An Overview,” Journal of Policy and Practice in Intellectual Disabilities, 2010, 7(2): 137–142.
O’Brien, K., and E.S. Zaharia, “Recent mortality patterns in California,” Mental Retardation, 1998, 36(5).
O’Brien, K., and E.S. Zaharia, “Is it life threatening to live in the community? Commentary,” Mental Retardation, 1988, 36(5).
Perry, J. and D. Felce, “Subjective and Objective Quality of Life Assessment: Responsiveness, Response Bias, and Resident: ProxyConcordance,” Mental Retardation, 2002, 40 (6): 445–456
Shavelle, R.; D. Strauss, and S. Day, “Deinstitutionalization in California: Mortality of Persons with Developmental Disabilities After Transfer Into Community Care, 1997-1999,” Journal of Data Science, 2005, 3(4): 371-380.
Strauss, D. and T. Kastner, (1996). “Comparative mortality of people with mental retardation in institutions and the community,” American Journal on Mental Retardation, 1996, 101(1): 26-40.
Strauss, D. and R. Shavelle, “Policy Implications of Mortality Research: What Can We Learn From the California Mortality Studies?” Mental Retardation, 1998, 36(5).
Walsh, K., and T. Kastner, “The Hissom Closure in Oklahoma: Errors and Interpretation Problems in Conroy et al.,” Mental Retardation, 2003, 44( 5).
Weismann, C., and K. Hearn, “Conroy Reports Controversy,” Outreach, May 1996.
The fight for Glavin is winnable, Senator Brewer
Despite the Patrick administration’s determination to close the Glavin Regional Center by next June, families of residents in the facility are prepared to wage a legal battle to save it, The Worcester Telegram & Gazette reported on Sunday.
The families are planning to use the same administrative and court appeal process to stay at Glavin that guardians of 14 residents of the Fernald Developmental Center have used to keep that facility operating more than two years past its scheduled closure date.
The appeal process is based on a state law, which says that the state must prove that a resident’s services and quality of life will be improved if he or she is to be transferred to another location.
“We’re not going to leave here without a fight,” Wilfred Dumont, the father of 28-year-old Stephen Dumont, a Glavin resident, told The Telegram & Gazette. Dumont and his wife, Rosemary, are among several Glavin guardians who are actively opposing the transfers of their loved ones from the facility.
Not only has Glavin provided a high level of care that these families have not been able to find in the Department of Developmental Services community-based system, but Glavin has also provided a range of medical, dental and other services to community-based DDS clients.
As COFAR Executive Director Colleen Lutkevich stated in a letter submitted yesterday to the editor of the Telegram & Gazette:
…the reality is that Glavin is a wonderful community of residents, families, and staff. Instead of closing this innovative state-of-the-art residence, built with such hope and promise not that long ago, we call on Governor Patrick and DDS Commissioner Howe to admit their mistake and cancel Glavin’s closure. It is not only the morally right thing to do, it is good economics.
Ironically, the Glavin families, like their Fernald counterparts, have been forced to adopt the administrative appeal strategy because key state legislators have never supported proposals for either an independent cost study prior to closing those facilities or for legislative approval of the closures.
Senator Stephen Brewer, chairman of the Senate Ways & Means Committee, is quoted in the Sunday Telegram & Gazette story as saying he wouldn’t support an independent cost study for Glavin this year because the fight to preserve the center “is unwinnable.” He also raised a perennial red herring about the $10 million cost of operating Fernald for 14 residents (more about that below).
All along the way, however, Brewer has tried to play both sides of the fence, telling The Springfield Republican in May 2010 that he did support a cost study prior to closing Glavin and three other facilities, and saying: “We’re in this to try to help the people stay in the places they call home. Some of those people have been there 60 years.”
It’s now clear that Brewer himself has personally played a major role in bringing about the closures of Fernald, Glavin, and the Monson and Templeton centers. Meanwhile, he’s still trying to have it both ways. In the debate over the current-year budget, Brewer supported an independent cost study prior to the closure of Taunton State Hospital, a Department of Mental Health facility.
As to the contention that Fernald and the other DDS centers have become too expensive to continue to operate, here’s what we’ve said many times: confirm that with an independent study. No one in Massachusetts has done a comprehensive and independent study of the relative cost of care in the developmental centers versus community-based group homes. That’s why COFAR began calling in late 2011 for such a study to be done by an accounting firm or other entity selected by the Inspector General.
If Senator Brewer and other opponents of the DDS developmental centers are convinced it is more expensive to continue to operate them than to move everyone in them to community-based group homes, why do they oppose an independent study of that issue?
It is true that the cost per resident at Fernald, in particular, is currently very high. But as DDS Commissioner Elin Howe herself has noted, the cost per resident of any institution that is being closed spikes as fixed costs are spread over a shrinking base of residents. Let’s not forget, it was the administration’s choice, not the families’ and guardians’ choice, to move residents out of Fernald, Glavin, Monson, and Templeton.
The fact is that state funding for the four developmental centers has dropped by close to $70 million in the past four years. Yet, funding for community-based programs such as transportation services, family supports, and day programs remains well below what it was in Fiscal Year 2009. That the $70 million in so-called savings hasn’t helped those community line items should be of more concern to Senator Brewer than the temporary cost of continuing to operate Fernald or Glavin while guardians there exercise their lawful appeal rights.
Meanwhile, Brewer and other legislators should also be concerned about the loss of the intensive Intermediate Care Facility (ICF) model that is occurring as Fernald, Glavin, Templeton, and Monson are shut down. ICF care conforms to federal standards that are much more stringent than the standards that govern community-based care. This has real implications for care.
In their study of a major deinstitutionalization in California in the mid-1990s, Robert Shavelle, David Strauss, and Steven Day found that as of 1999, there had been 81 deaths among residents transferred from institutions to community-based group homes — a 47 percent increase in mortality over that expected in the institutions. (The results were significant at the 95% confidence level.)
The California study concluded that the reasons for the higher mortality rate in the community system were the less intensive medical care and supervision available in the community than in the institutions in that state.
We should also respond to statements made by DDS Commissioner Howe in the Telegram & Gazette story on Sunday. Howe said, among other things, that closing the developmental centers in Massachusetts follows a New England and national trend; that Connecticut has only one institution for people with developmental disabilities, and that none of the other New England states have any such facilities.
First of all, Connecticut currently has a total of six state-run ICFs that provide care under the same federal standards as Glavin, Fernald, Monson, Templeton and two other facilities in Massachusetts. The Connecticut public ICFs include the Southbury Training School and five regional centers.
In addition, Connecticut has 69 privately operated ICF facilities, and private ICFs also exist in Maine, New Hampshire, Rhode Island, and Vermont. Massachusetts, however, has no ICFs outside of six state-run facilities, four of which are targeted for closure.
While the national trend has been to move people from large, state-run institutions to smaller, privately run facilities, the ICF model is not being phased out nationally as it is in Massachusetts. More than 7,000 public and private ICFs operate nationwide, according to the American Health Care Assocation. For the record, we have long supported the downsizing or “rightsizing” of the remaining developmental centers in Massachusetts. What we oppose, as noted, is the phase-out of the ICF model.
We also prefer that the ICFs continue to be state-operated because state workers tend to receive better pay and benefits, and consequently have less turnover, than those in privately run facilities.
Howe also maintained that the community system and two remaining developmental centers in Massachusetts “are strong enough to meet all of the individuals’ needs.”
Tell that to Wilfred and Rosemary Dumont, who were unable to find a community-based facility that could successfully treat Stephen, who had a habit of opening up a permanent wound on his head by repeatedly banging his head on hard objects. Tell that to Brad and Joan Douty, whose daughter Anna hit herself in the head so often while living in a group home that she eventually detached the retinas in both eyes and is now blind.
Both Stephen Dumont and Anna Douty have been living successfully at Glavin for several years.
Or tell that to Roland Charpentier, who moved his brother Richard out of Glavin and into a non-ICF group home on the Glavin grounds a few years ago. After his brother contracted pneumonia four times, Roland had him moved back into Glavin.
“My intention is to keep Richard here (at Glavin) no matter what the state wants to do,” Roland Charpentier told The Telegram & Gazette. “I’m going to stand and fight for Richard’s rights.”
COFAR blog 