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Sheltered workshops for the disabled win big reprieve in Massachusetts
A major effort by advocates of sheltered workshops in Massachusetts to persuade state legislators and the Patrick administration that the workshops provide invaluable skills and activities for their loved ones with intellectual disabilities has paid off.
Last week, Governor Patrick signed the Fiscal Year 2015 state budget, which contains language protecting the workshops from closure. The language states that the state must not “reduce the availability or decrease funding for sheltered workshops serving persons with disabilities who voluntarily seek or wish to retain such employment services.”
The passage of this language appears likely to cause at least a slowdown in the administration’s plans to close all remaining sheltered workshops in the state as early as next June. The administration has contended that sheltered workshops “segregate” people with developmental disabilities from their non-disabled peers in the mainstream workforce. Supporters of the workshops, and we are among them, argue that the workshops provide needed skills and fulfilling work for people with intellectual disabilities, and do not prevent them from contact with peers in the community.
The protective workshop language survived a House-Senate conference committee late last month, and Gov. Patrick had until last Friday to line-item veto it, and chose not to do so. So, it’s now the law.
The legislative victory is largely due to an intensive effort by workshop supporters to get the word out to key legislators — particularly to Rep. Brian Dempsey, chair of the House Ways and Means Committee — of the value of the workshops, and of the contention that the administration and corporate provider-based organizations such as the Arc of Massachusetts were spreading misinformation about them. Dempsey, in particular, has turned out to be a strong supporter of the workshops, particularly in the budget conference committee.
It remains to be seen whether the protective language will help people like Tom Urban, a 55-year-old man with Down Syndrome, who had been employed in a sheltered workshop for the bulk of his adult life, according to his brother and guardian, Richard. Richard said that last December, he was informed that all sheltered workshops were being closed and that Tom would no longer be employed, as of the very next day, in his workshop, operated by Work, Inc., a Department of Developmental Services provider.
“To put it mildly, this was a rather disruptive change in Tom’s life with no opportunity to prepare him for this shocking development,” Richard Urban wrote in an email to Rep. Dempsey in late May. “Moreover,” he said, “no chance was provided for me, as his brother, guardian and caretaker, to voice any opposition, or input, to this policy change imposed by (DDS).”
Richard said that although Tom “has limitations in a variety of areas, his work ethic and paycheck (from his sheltered workshop program) were two constants that allowed him a place on a playing field of equality with his peers, family and friends.” Since his “forced exit from his workshop,” Richard added, Tom “has grown distant, is very confused, and expresses continued sadness over his job loss. His identity, and work community, have been lost, through no fault of his own but by virtue of a policy shift for which I am at a complete loss to understand.”
The effort to close the workshops has been driven by an extreme anti-congregate care ideology that the Patrick administration subscribes to. Simply because a group of disabled people work together in sheltered workshops, the administration considers it to be a “segregated setting.” As a result, we are concerned that despite the budget language allowing those who are currently in workshop programs to remain in them, people like Tom Urban, who have lost their workshop programs or are seeking for the first time to get into one will find not be able to do so. Last year, the administration announced it would no longer allow new referrals to sheltered workshops in the state as of this past January.
In addition, the FY 2015 budget contains at least two reserve funds totaling $3 million to support the transfers of persons from sheltered workshops to provider-run day programs and unspecified job training programs. While the administration contends that intellectually disabled people will all be able to reach their potential in mainstream or “integrated” work environments, there is uncertainty over how many mainstream jobs really exist for most people with developmental disabilities, and many questions about what integrated employment really means.
Sheltered workshops have won a welcome reprieve in Massachusetts, but their future still remains uncertain; and also uncertain are the long-term prospects of fulfilling work activities for thousands of people with developmental disabilities in the state.
The endless shuffle continues for the DDS national background check bill
Does anyone in the state Legislature or the Patrick administration really want to set up a national background screening process for people hired to work with the intellectually disabled in Massachusetts?
Apparently not.
Everybody likes to talk about how important it is to protect the most vulnerable among us from abuse and neglect. Yet the Legislature has been unwilling for years to pass national background check legislation, and the administration has been unwilling even to apply for federal funds that are available under ObamaCare to implement a national background check program.
So far this year, there’s not much reason to think anything is going to change, though there is always a faint hope. This year’s version of the national background check bill (H. 4125) was approved by the Judiciary Committee in late May after the measure had languished there for nearly a year and a half. But it was sent as usual to the House Ways and Means Committee. Every time the bill has been sent to House Ways and Means, it has died there. For years, the bill has been on an endless shuffle between these two committees.
Another piece of bad news for the legislation this year is that the only elected official in Massachusetts who has ever made a recognizable and visible effort to promote it is Martin Walsh, who is now mayor of Boston and no longer in the House of Representatives. For years, as a state representative, Walsh filed legislation to enact national background checks for Department of Developmental Services employees and employees of DDS corporate providers; and as recently as last July, Walsh testified in favor of his bill before the Judiciary Committee.
COFAR and a wide range of other advocacy groups for the developmentally disabled have long urged passage of the legislation. But other than Marty Walsh, we see no elected officials who seem particularly interested in enacting this legislation. You have to wonder why. Is there a special interest group out there that we’ve never heard of that is working to keep this legislation bottled up?
The administration claims to be in support of the bill, but they have not testified in favor of it in recent years, and, as noted, have never applied for available federal funding to implement a national background check program in Massachusetts. That funding, as noted, has been available under the Affordable Care Act since 2010. In that time, the federal Centers for Medicare and Medicaid Services has awarded more than $50 million to 24 states to design national background check programs.
National background checks involve matching a job applicant’s fingerprints against a federal database maintained by the FBI. Every advocacy group for the disabled that we know of agrees that state-only background checks — which is what DDS currently does in Massachusetts — are not sufficient in screening applicants for direct-care jobs because those checks do not turn up convictions for criminal activity in other states.
Massachusetts has apparently not been a leader in background screening of people who work with other vulnerable groups either. In January 2013, Massachusetts did enact a law requiring national background checks for school teachers and early education employees, but it was the last state in the nation to do so.
By the way, where are the candidates for governor and attorney general on this matter?
Please call the House Ways and Means Committee and ask them to finally approve H. 4125 and get it enacted; and please call the governor’s office and ask them to apply for funding available to implement the program.
You can reach the Ways and Means Committee at (617) 722-2990, and the governor’s office at (617) 725-4005.
Parents prohibited from even discussing a visit home with their son
When Stanley and Ellen McDonald tried to share and discuss a COFAR Blog post with their son, Andy, during a visit to his group home on June 22, the residential manager told them to stop, or their visit would be terminated.
The post was about Andy’s 47th birthday party, which was held at Carbone’s Restaurant in Hopkinton on June 6, and it quoted Andy’s wish as he blew out the candles on his birthday cake to someday be allowed to visit his boyhood home in Sherborn where his parents still live. Apparently, even expressing that wish was against the house rules. Andy and his parents are prohibited by a probate court order and by his residential provider and other authorities from even discussing the prospect of Andy ever visiting his hometown, even under supervision.
A probate court judge ruled in 2006 that Andy is sexually dangerous, but Stan McDonald maintains the ruling is based on misinformation and a misinterpretation of a police report from an incident in 1990 in which Andy threatened a neighbor. Andy has never been charged with a sexual offense; the neighbor has long since moved away, and clinical records indicate Andy has not exhibited aggressive behaviors in more than a decade.
Placing restrictions on subjects families can discuss with their loved ones in the Department of Developmental Services system is apparently not unusual. As we have reported, the family of Sara Duzan, another DDS group home resident, was cut off from all contact with her after they allegedly violated a prohibition on discussing care and conditions in the group home with her.
Stan McDonald, who is 78, maintains that Andy had not been expressing a wish on his birthday to return to his home to live, but just to visit his parents, and possibly to hear Stan play with his jazz band at the Sherborn Inn. But while Andy is allowed under his care plan to hear Stan’s band in other locations, not only can he never return to his hometown, he cannot even talk about his wish to do so.
Stan says that after Andy had finished reading the COFAR Blog post with Stan’s and Ellen’s help, the assistant residence manager “expressed what seemed friendly interest, so we gave her a copy.” A few minutes later, he says, the assistant manager handed him a phone with a call from the residence manager, “who told me to desist from talking with Andy about this or she would terminate the visit.” Stan says he reluctantly agreed to stop discussing the post, but “Andy and Ellen and I were deeply offended by the ignorance and insensitivity that was exemplified.”
Andy wants to believe he is a good person, Stan says, so forbidding him even from talking about a wish of great importance to him has affected his self-esteem. Andy’s resulting anxiety, Stan adds, is manifested in certain behaviors such as bolting his food until he sometimes chokes, and rapid and slurred speech.
Yet, even Andy’s psychiatrist will not discuss his desire to return to his childhood home with him. The group home’s solution to Andy’s anxiety is to medicate him, Stan maintains. The situation, he contends, amounts to “emotional abuse” of Andy.
“Andy has been given a life sentence for a crime he never committed – and with no opportunity to appeal,” Stan maintains.
Stan contends that it is the group home management and DDS itself that do not want to discuss the real issues in Andy’s care. At a meeting on June 20 to discuss Andy’s annual care plan, Stan says the meeting was abruptly terminated by a DDS official when Stan tried to discuss written comments he had handed out at the end of the meeting about what he views as issues in Andy’s care that have not been adequately addressed. Those issues, according to Stan’s written comments, include the following:
- Andy’s “extreme anxiety…(which is) directly related to 17 years of refusal of his wishes for visits home — wishes which he is denied even to express,” and the consequent medication to control that anxiety.
- A failure to implement provisions in Andy’s care plan for regular visits to his friend, Tom.
- Sub-standard dental care. His gums are bleeding. He has gingivitis and periodontal disease.
- A need for more regular exercise
- The group home is over-crowded with five residents.
Apparently DDS doesn’t want to discuss any of that. It’s bad enough that the DDS officials in charge of the care and services for Andy would not take the time to listen to his father’s concerns at Andy’s annual care plan meeting. But we particularly do not understand the policy that DDS and its providers apparently have of prohibiting clients in the system from talking about their deepest wishes and concerns, apparently even with clinicians and family members.
How can it serve someone’s therapeutic interest to keep a deep-seated wish or desire bottled up through an enforced order that they not even talk about it? Is it the clinical approach to care in the DDS system to forbid people from talking about sensitive subjects and then to medicate them to control their resulting anxiety? Clearly, that policy is not working in Andy’s case, and we don’t think it’s working in Sara Duzan’s case either.
Does the administration have a double standard in the care of the disabled?
As The Boston Globe reported last week, Governor Patrick has “unveiled an ambitious and potentially costly plan” to reform the way the state’s criminal justice system handles mentally ill people.
The governor has proposed both a major increase in staff at Bridgewater State Hospital and a new facility there where potentially violent patients could receive care, according to the Globe.
We support the administration’s commitment to expanding care at Bridgewater State. But we wonder whether this is yet more evidence of what appears to be a double standard on the part of the administration with regard to care of the mentally ill versus persons with developmental disabilities.
The administration appears to believe that congregate settings are necessary and appropriate for the mentally ill, but not appropriate for the developmentally disabled. In fact, we think Governor Patrick will be known as a builder of major institutional facilities for the mentally ill, yet as a closer of facilities for the developmentally disabled. This appears to us to reflect the absence of a comprehensive plan by this administration for care of all disabled people in the commonwealth.
Why are we building new state facilities and expanding state-run care for one group, yet tearing facilities down, eliminating an intensive care model, and privatizing most services for another group?
In addition to the plans for expansion of Bridgewater State for the mentally ill, the administration has taken major credit for the construction of the new Worcester Recovery Center and Hospital. That facility, which opened in August 2012 at a cost of $302 million, has 320 beds for persons with mental illness. The administration has billed it as “the largest non-transportation construction project (the state has) undertaken in more than 50 years.”
The administration has also apparently realized that intensive treatment models are necessary for the mentally ill. According to the Globe, the administration has declared that mentally ill people “should receive the appropriate care in the appropriate setting.” The Bridgewater proposal includes a plan for spending $10 million for an additional 130 full-time mental health clinicians at the complex. Patrick administration officials told the paper that if the Legislature approves this funding promptly, the additional staff could be working at Bridgewater by September.
The Bridgewater proposal further calls for $500,000 to study the possibility of retrofitting an existing state facility such as Taunton State Hospital or building yet another a new facility to treat and evaluate potentially violent people accused of committing crimes, according to the Globe. The plan gives no cost estimate for the new facility.
At the same time, the administration is closing or has closed four of six developmental centers for people with profound levels of intellectual disability and severe medical conditions, contending these centers are too institutional. Developmental centers provide an intensive level of care that must meet federal Intermediate Care Facility (ICF) standards. ICF rules specify more staffing and monitoring than do federal and state requirements for privatized, community-based care in group homes.
Even sheltered workshops are considered by the administration to be too institutional for the intellectually disabled, and the administration has announced plans to shut those down by June of next year. The administration is, at the same time, pouring additional funding into privatized group homes for the intellectually disabled, scattered in communities throughout the state.
The argument could be made that the administration views institutional care as appropriate for people with mental illness who are violent, and that’s why it is expanding facilities such as Bridgewater State. But that doesn’t explain the construction of the Worcester hospital center; and it doesn’t explain why the administration is eliminating the ICF care model at facilities for the developmentally disabled such as the Templeton Developmental Center, where many people with behavioral problems live.
The alleged assault by a Templeton resident that caused the death last year of Dennis Perry shows that even that facility may not be fully equipped to meet the needs of all the people who live there, and keep them safe. And yet, the administration is closing Templeton as an ICF and converting the facility to group homes, which will only reduce the level of staffing and supervision there. Also, the attempted rape of a woman by a resident of a group home in Chelmsford in 2011 shows that there are intellectually disabled persons with potentially violent impulses who live in the DDS community system.
It has been argued that another difference between facilities for the mentally ill, such as the Worcester hospital center, and developmental centers for the developmentally disabled is that the Worcester facility is meant to help people make a transition to independent living in the community, whereas developmental centers are not intended to do so. Therefore, according to this argument, the developmental centers should be closed, and the remaining system will be devoted either to serving all disabled people in the community or helping them get there.
Our response to that argument is that we have consistently stated that residents of developmental centers who want to benefit, or can benefit from community-based care should be encouraged to do so. As far as we know, there has never been any rule or policy that prevented anyone who wanted to leave a developmental center from doing so and moving into the community system.
As we argued in connection with the Chelmsford group home incident, the real issue is the care model. The administration wants to eliminate the intensive, ICF care model for people with developmental disabilities. The administration does acknowledge that people with mental illness should receive the appropriate care in the appropriate setting. And they appear to understand that the community system is not the appropriate setting for all mentally ill people. But for some reason, the administration hasn’t yet figured out that the community system isn’t the appropriate setting for all people with intellectual and developmental disabilities either.
We do believe that one day, the state will come to realize that institutional care for a certain segment of the developmentally disabled is needed, and there will be an effort to reconstruct our institutional facilities for them. Unfortunately, we’re making that future job much more difficult and expensive by tearing down the system that we have had in place and which we spent so much money to upgrade from the 1970’s onward.
Abuse and neglect found to have caused serious injury to group home resident
The state Disabled Persons Protection Commission has substantiated charges of abuse and neglect against a staff worker in a Bedford group home in which Paul Stanizzi, an intellectually disabled man, was seriously injured last August.
Stanizzi was at least partially paralyzed in the incident in the residence, which is operated by The Edinburg Center, Inc., a corporate provider to the Department of Developmental Services. According to a DPPC report on the incident, Stanizzi was found lying on his back in his room by the staff worker on the morning of August 27. The staff worker, who had been on the overnight shift, told investigators he had heard noises in Stanizzi’s room during the night, but never investigated them and then fell asleep for several hours during his shift.
After finding Stanizzi unresponsive on the floor at 6:30 in the morning, the staff worker admitted he lifted Stanizzi up, in violation of his First Aid training, and put him in his bed. He then waited approximately 25 minutes prior to calling 911.
Stanizzi, who is non-verbal, was taken to Lahey Clinic in Burlington, which was planning to discharge him, according to the DPPC report. But the hospital then admitted him for immediate surgery when it became apparent that Stanizzi had a spinal injury. No group home staff accompanied Stanizzi to the hospital, according to the report.
The name of the group home staff worker is redacted in the DPPC report, which is dated February 20 of this year. COFAR had requested a copy of the report in September and was provided by the DPPC with a redacted copy yesterday. The report concluded that Stanizzi was seriously injured as a result of an “act or omission” on the part of the staff worker, and that a charge of abuse against the worker “was substantiated.”
When Fox25 TV news first reported this incident, the chief executive officer of The Edinburg Center maintained that Stanizzi may have injured himself.
According to the DPPC report, the staff member reported that when he found Stanizzi on the floor of his room, he had a black eye, bloody nose, bruises, and a gash on his knee. The report also stated that Stanizzi was seen to have “other older injuries that did not appear to be self-inflicted,” and footprints on the back of his shins. “It is believed that staff at the group home used extreme force on (Stanizzi), resulting in the injuries,” the report stated. Another client was observed in the past tied up in a chair, according to the report.
The incident involving Stanizzi has reportedly been under investigation since September by the Middlesex District Attorney’s Office. I placed a call this morning to the DA’s office, seeking information on the current status of the case and whether criminal charges are expected to be filed. Fox25 reported in November that a Middlesex grand jury had been impaneled in the case.
The staff worker, who was the only staff on duty in the group home during the overnight shift from August 26 to 27, told the DPPC that at about 4 a.m., he had heard noises from Stanizzi’s room, but he did not check on him. Instead, he admitted that he fell asleep and woke up about 6:30, and then found Stanizzi lying on the floor on his back, not moving.
The staff worker told the DPPC he tried to get Stanizzi to stand up, but he could not, so he “lifted him off floor, put him over his shoulder and placed him back in bed.” Instead of calling 911, the staff worker tried to have Stanizzi drink juice, the report stated. The staff worker also said he tried unsuccessfully to contact two supervisors. According to the report, there was testimony that the act of moving Stanizzi without first immobilizing his spine may have worsened his injuries. The report stated that Stanizzi was “expected to be a quadriplegic,” as a result of the spinal injury.
The DPPC report noted that a police officer who responded to the home noticed that the staff worker had a fresh scratch on right side of his face and that the staff worker told the officer he had no idea how it happened. The officer said he found that suspicious. There were four residents in the home, all non-verbal, and none had aggressive or assaultive behaviors, according to the report.
The DPPC report stated that documents indicate that Stanizzi had no history of an unsteady gate or falling out of bed. The day before the incident, at a day program, the same staff worker had refused, according to testimony, to allow staff there to examine apparent abrasions to Stanizzi’s legs.
According to the report, the staff worker’s testimony changed in a number of instances. He initially denied that he had fallen asleep and later admitted that he had done so. He also admitted to having given false statements about the day program incident and about Stanizzi having hit himself in the face. The report states that the staff worker denied that he physically assaulted Stanizzi, but it concluded the truthfulness of that statement “is called into question” by the staff worker’s admission that he had lied about the other issues.
The DPPC report recommended retraining for staff and regular checks by the provider to make sure staff are awake on overnight shifts, as well as documented bed checks. While the staff worker implicated in this case has reportedly been terminated, the report recommend he not be rehired in the future.
As COFAR previously reported, an online DDS licensing report on the Edinburg Center stated 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. (As of today, the latest licensure report on DDS’s website is still dated December 2010, which would make it about a year and a half 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.)
The 2010 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. As we noted, 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 Stanizzi family has apparently filed suit against The Edinburg Center. Yesterday, I received a subpoena from an attorney for the provider, seeking all records COFAR possesses relative to the case.
A birthday celebration for a man who can’t return home
[Note: This is one of a number of cases we have reviewed in which the state, courts, and providers have acted to reduce and even eliminate contact by family members with their loved ones with intellectual disabilities. We are hopeful that the Patrick administration will change its position in these cases in light of its reversal last week of its position in the high-profile case of Justina Pelletier. In that case, the administration is now supporting the return of Justina to her parents. The administration had previously agreed with a judge who had awarded permanent custody of Justina to the state after doctors at Boston Children’s Hospital charged that her parents were having her wrongly treated for an apparent medical condition.]
Andy McDonald celebrated his 47th birthday at Carbone’s Restaurant in Hopkinton this past Friday with his father, Stan, his step-mother, Ellen, three of his childhood friends, a nephew of his, two members of Stan’s jazz band, and a staff member from Andy’s group home.
It was a low-key dinner, but Andy, who has a mild intellectual disability, was clearly having a good time, sitting next to his dad, keeping up a steady stream of chatter, remembering to engage everyone. He called over to me at regular intervals, “How’re you doing?” And when I answered fine, he would say “Peace,” and hold up two fingers in the old salute from the 1960s.
“I think he came out (of the womb) talking,” a staff member of his group home said.
It was a happy gathering, but a cloud, as usual, hung over it. Andy has been prohibited by a court order, his court-appointed guardian, his group home provider, and the state from ever visiting his hometown of Sherborn, even under supervision. That is where Stan and Ellen still live.
A probate court judge ruled in 2006 that Andy is sexually dangerous, but Stan maintains the finding is based on misinformation and a misinterpretation of a police report from an incident in 1990 in which Andy threatened a neighbor. He has never been charged with a sexual offense, and clinical records indicate he has not exhibited aggressive behaviors in more than a decade.
Stan is now 78 years old. At the birthday celebration, Stan looked happy to be sitting beside his son, but tired. Some people wondered what will happen when Stan and Ellen are no longer able to travel to Andy’s group home. Since he has been banned for life from going back to his hometown, would Andy no longer be able to see his father and step-mother?
“I don’t think that would make any difference to them,” Stan said, referring to the courts and other decision makers. Stan has been fighting for years to be Andy’s guardian. He and his former wife voluntarily relinquished their guardianship in 1986 as part of a settlement of a longstanding custody battle over Andy.
Despite the support of a legislator, many supporters, and even his former wife for Stan’s guardianship bid, there has been no reconsideration by the Department of Developmental Services or the courts of the decision not to appoint him as guardian. And there has been no reconsideration of the Department’s position that Andy should never be allowed to visit his parents in their home. Stan can’t afford the legal costs of trying to change the situation. It was clear that those who make the decisions about Andy do not see him or Stan or Ellen on a regular basis, or have never met them.
When friends arrived at the party on Friday, Andy greeted them with, “You’re lookin’ old. How old do you think I am?” At times, Stan would have to slow him down a bit, particularly when Stan was on the phone with Ellen, who had left to try to find Adam, a friend of Andy’s, who had gotten lost driving to Carbone’s.
One of Andy’s favorite things are scratch tickets; so nearly everyone gave tickets to him, tucked into birthday cards, and Andy spent a lot of time, in between eating dinner and later birthday cake, scratching the tickets to see what he might have won. He ultimately won $19. Once, many years ago, he explained proudly, he won $2,000 on a ticket.
Even as he celebrated his birthday, Andy showed he has a concern about death, particularly of people close to him or whom he admires. He asked me at one point if I knew the song “Abraham, Martin, and John,” about the assassinations of Abraham Lincoln, Martin Luther King, John F. Kennedy, and Bobby Kennedy. “They were good people,” he said. “Their passing is sad.” And he also mentioned the death last week of Ann Davis, the actress from The Brady Bunch. “It’s sad that she has passed,” he said. The Brady Bunch is still one of his favorite TV shows, and he broke out at one point into a rendition of the Brady Bunch theme song.
Ellen never got the chance to eat her dinner. Once she arrived after having located Adam, it was time to bring out the ice-cream and chocolate birthday cake. She brought the cake to Andy’s table, the candles burning, and everyone singing “Happy Birthday,” as she set the cake in front of Andy and told him to make a wish.
Andy blew out the candles, and said his two wishes out loud. “I wish for everlasting life,” he said, “and for the chance to one day return to my hometown of Sherborn.” “God bless you, son,” were Stan’s words to him.
Pelletier case reversal shows gov’s power to affect guardianship cases
The Patrick administration has dramatically reversed itself in the Justina Pelletier case, and asked a judge to reunite her with her family, The Globe reported this week.
I think this reversal shows the power that Governor Patrick has to intervene in these cases. He should do the same with the Duzan and McDonald cases, in which the Department of Developmental Services has similarly supported draconian restrictions on contact by family members with loved ones in the DDS system.
Justina Pelletier spent nearly a year in a locked ward in Boston Children’s Hospital after doctors there disagreed with the family’s diagnosis that Justina was suffering from mitochondrial disease. The Children’s Hospital doctors claim her illness is psychological, and as a result they got a judge to agree to award temporary custody of her to the state Department of Children and Families.
Late last week, DCF reversed its longstanding opposition to reuniting Justina with her parents and filed a request with the judge to allow her to return home. The Globe noted that Executive Office of Health and Human Services Secretary John Polanowicz played a personal role in trying to broker a resolution of the case. There is no doubt in my mind that Polanowicz was acting on orders from the governor and that the governor was starting to view the Pelletier case as a political liability for himself and wanted to see it resolved.
The state, human services and health care providers, the courts and their appointed guardians and other authorities have enormous coercive power over families, particularly when it comes to making decisions about care for persons with illnesses or disabilities. This power is often exercised without restraint even though federal law explicitly states that families should be considered the “primary decision makers” in the care of loved ones with disabilities. But that raw exercise of power does come with some political risks if the case has a high enough public profile, and the Pelletier case certainly has had that.
Unfortunately, the mainstream media has so far been uninterested in looking into the Duzan and McDonald cases and potentially others like them. As a result, those cases have not been resolved.
The state’s power to intervene in family affairs is a sensitive political issue that politicians apparently don’t want to involve themselves with unless they are pushed into it through public pressure. I’ve asked two candidates for statewide office in Massachusetts, who have touted their political independence, for their view on the Pelletier case — Don Berwick, who is running for governor, and Maura Healey, who is running for attorney general. (I asked Berwick the question in an online “town hall” meeting that he held a couple of weeks ago, and I posed the question to Healey as a comment in a blog post about her.) Neither candidate has responded.
Since I “participated” in Berwick’s town hall event, I do get constant requests from the campaign for money. But personally, before I support a candidate, I want to see that they have the political fortitude to answer a question about the Pelletier case or a case like it.
DDS expands privatized services despite family preference for state care
Patricia Murphy had to file a federal lawsuit in order to get her intellectually disabled sister out of a corporate, provider-operated group home, where she says she was subjected to abuse and inadequate care, and into a state-operated group home.
Murphy’s case illustrates how difficult the Department of Developmental Services has made it for people either waiting for services or receiving inadequate services in privatized group homes to obtain state-run residential placements in Massachusetts. DDS funds group homes run by both corporate providers and by DDS staff.
At the same time, people living in state-run developmental centers have been given priority in finding state-operated group home placements when the developmental centers have been closed.
Here are some facts to consider:
- More than 87 percent of the 372 people who have been transferred since 2008 from four developmental centers marked by the administration for closure have gone either to state-operated group homes or to two remaining developmental centers (primarily to the Wrentham Developmental Center). Only 47 people — less than 13 percent of the total — were transferred to corporate, provider-run group homes. This, to us, indicates, a strong preference among families and guardians for state-run care.
- As a result of this apparent preference, DDS has built 49 new state-operated group homes since 2008. But it has closed 28 such residences during that same period, resulting in a net increase in state-operated residences of only 21.
- There are apparently vacancies in state-operated group homes. DDS figures show that nearly all of the 99 residents living in the 28 residences that have been closed were moved to other state-operated residences.
- Yet, DDS is placing a priority on boosting funding and resources not to state-operated care, but to corporate providers, and has either cut funding for state-run care or provided more modest increases for it. The governor’s proposed Fiscal Year 2015 budget would result in an increase in the provider residential line item of almost 17 percent in inflation-adjusted terms, more than double his proposed 6.5 percent increase in the state-operated residential line item.
The new state-operated group homes built since 2008 appear to have been intended to accommodate only the residents transferred from the developmental centers. They have apparently not been made available for virtually anyone else. DDS is not only not building new state-operated facilities for persons other than former developmental center residents, it is apparently not letting people other than developmental center residents even know about the existence of state-operated residential care options.
Thousands of disabled individuals are reportedly waiting for residential services in Massachusetts, although the state does not maintain an official waiting list that would publicly identify the number of people of waiting. Others, such as Patricia Murphy, are apparently trying unsuccessfully to move family members or wards in the DDS system from provider-operated to state-operated care.
The administration’s policies of under-funding state-operated care, closing existing state-operated group homes, and preventing people from choosing state-operated care as a residential option are combining to reduce the availability of high-quality care throughout the DDS system. Direct-care workers in state-operated group homes have better training and benefits than workers in the provider-operated system. That’s why families from the closing developmental centers have chosen state-run facilities for their loved ones. But the administration appears to be more interested in promoting a privatized, provider-run system than in placing people in settings offering the best care.
According to information from DDS, 157 new provider-run homes have been built since 2008, bringing the number of such homes to more than 1,800 in Massachusetts. In contrast there are just 261 state-operated group homes in the commonwealth and only two fully functioning developmental centers that are not currently targeted for closure.
DDS has stated that it is currently projecting to build five new state-operated group homes, but it is also projecting to close six of them. Our question is why. Why build new state-operated homes and at the same time close existing homes, and moreover, why close these homes while people are waiting for residential placements?
Patricia Murphy’s lawsuit, which was filed last year, alleges that DDS routinely fails to disclose the existence of state-run homes and developmental centers to individuals applying for DDS care, and portrays corporate, provider-run homes as the only option for them. The plaintiff in the case, Kathleen Murphy, is severely intellectually disabled, and was a resident of a group home operated by a corporate provider to DDS. (Disclosure: Kathleen Murphy is represented by Thomas Frain, an attorney who is president of COFAR’s Board of Directors.)
“We had been asking DDS since 2006 to get her (Kathleen) into a state-operated group home, and they wouldn’t do it,” Patricia Murphy says. The federal complaint maintains that Kathleen Murphy suffered severe psychological harm and a risk of death in provider-run group homes. She was finally moved to a state-operated group home in February, but only after the lawsuit was filed.
According to the complaint, Kathleen was over-medicated in a provider-run residence with Depakote and Risperdal, drugs for bipolar disorder; however, that diagnosis of bipolar disorder later turned out to be mistaken. The suit alleges that DDS’s failure to move Murphy to a state-run facility coupled with its failure to provide people waiting for DDS care with the option of state-run residential care violate federal laws. Those laws include the Home and Community Based waiver of the Medicaid Law (42 U.S.C., Section 1396), which requires that intellectually disabled individuals and their guardians be informed of the available “feasible alternatives” for care. In addition, the complaint alleges that the state is violating the federal Rehabilitation Act (29 U.S.C., Section 794), which states that no disabled person may be excluded or denied benefits from any program receiving federal funding.
DDS’s projected number of transfers to provider residences didn’t materialize
In 2009, DDS projected that a substantial number of former developmental center residents would choose provider-run residential care. In its Community Services Expansion and Facilities Restructuring Plan in 2009, DDS projected that slightly more than half of a then estimated total of 402 developmental center residents would be transferred to provider-run group homes. In other words, DDS was projecting a major increase in the number of clients living in provider-run residences — a situation that would result in millions of dollars of additional state revenue to the providers.
As it turned out, the 47 former developmental center residents who actually transferred to provider-run residences was 77 percent fewer than the 206 that DDS had projected. The number of residents who actually transferred to state-operated group homes (156) was 39 percent higher than what DDS projected in 2009, and the number that transferred to other developmental centers (169) was more than double what DDS originally projected.
In actuality, things didn’t work out the way DDS and the providers had projected or apparently hoped. Possibly for that reason, it would appear that DDS is continuing to try to maximize the providers’ revenue and business opportunities at the expense of adequate and appropriate care and services for the vulnerable people in the Department’s care. DDS needs to rethink its policies in this regard. At the very least, DDS should let people seeking residential care know about existing vacancies in state-operated group homes. That is after all the law.
Let’s honor Ally, Kim, Allison, and Gail’s choice to stay in their sheltered workshop
It’s now up to a legislative conference committee to decide whether Ally, Kim, Allison, Gail and many others will continue their longtime participation in sheltered workshops for the intellectually disabled in Massachusetts.
Ally is 24 years old and has Down Syndrome. She is non-verbal and suffers from anxiety, but excels at routine. Her tasks and assignments at a workshop in Newburyport provide her with a feeling of satisfaction and importance, and with a paycheck, which she endorses and cashes at a local bank. She then walks with her mother to a convenience store where she purchases items with her earnings.
Kim, 43, has worked in the same sheltered workshop for 23 years. She has tried a number of times to work at jobs in the community, but those attempts have all failed for a variety of emotional, social and physical reasons. However, by choice, she puts in a 30-hour workweek in the sheltered workshop. She lives in her own apartment with support from her parents and other family members, and from people in the community.
Allison is 44 and has been a client of the workshop for 22 years. During that time, she has grown in independence, but enjoys being with her peers in an organized, safe environment. She works a few hours a week at a McDonald’s, but returns to the workshop every day. She is very proud of earning two paychecks.
Gail is 44 and has Down Syndrome. “I like to get paid to do the work I like to do. I like to work with my friends,” she says of her participation in the workshop. She lives in an apartment managed by the YWCA in Newburyport, makes her own breakfast and lunch, and takes a bus to the workshop every day. Doing all of that requires 100 percent of her capability. Gail has had several part-time jobs in the community, all of which, for a variety of reasons, have ended. Her workshop job is the primary basis of her self-esteem.
However, the Patrick administration and state-funded, corporate providers believe they know better than these four women and their families what’s best for all of them, and are moving to close the Newburyport workshop and the rest of the sheltered workshops throughout the state.
As we have reported in several blog posts, the administration believes it would be better for Ally, Kim, Allison, Gail, and hundreds of other intellectually disabled persons throughout the state to work in mainstream jobs where they will not be “segregated” from non-disabled peers and will supposedly be able to earn higher wages. DDS announced that it was no longer allowing new referrals to sheltered workshops in the state as of this past January, and plans to close all remaining workshops as of June 2015.
But the families of workshop participants are fighting back, arguing that appropriate mainstream work opportunities do not exist for their loved ones, and that the sheltered workshops provide what they want and need. They maintain that when the workshops are gone, the former participants will end up stuck in DDS day programs with little to do and with no wages at all.
In late April, at the urging of families, workshop staff, and advocates, the House of Representatives inserted language in the proposed Fiscal Year 2015 budget to protect the workshops. The line-item language is intended to prevent the planned closures of sheltered workshops if existing participants choose to remain in them. The Senate, however, did not adopt the protective language. As a result, the issue is now set to be decided by a legislative, House-Senate conference committee on the budget.
The Department of Developmental Services and DDS’s corporate providers are apparently already moving to head off the possibility that the conference committee will adopt the protective language in the House version of the budget. We understand that late last week, Gary Blumenthal, president of the Massachusetts Association of Developmental Disabilities Providers (ADDP), held a meeting with administrators and staff and some parents in one sheltered workshop, and offered a vague promise to schedule another meeting with DDS to discuss keeping some of the workshops open on a limited basis.
Vague promises do not and should not take the place of clear and needed statutory language. We hope that the message gets communicated to the conference committee, which is set to begin deliberations on the budget on June 4, that such promises will not suffice. The protective language in the House budget should be adopted by the conference committee.
In coming weeks, we hope all six members of the conference committee will come to understand what participating in their sheltered workshops has meant for Ally, Kim, Allison, Gail and for so many others.
Setting the record straight yet again about the Fernald Developmental Center
Every year at budget time, the corporate providers funded by the Department of Developmental Services trot out the Fernald Developmental Center and the families that have appealed the transfers of their loved ones from the center as an example of an egregious waste of taxpayer dollars.
As today’s story in The Boston Herald demonstrates, this year is no exception. There are six or so residents left at the facility, which was targeted for closure by the Patrick administration in July 2010. But because those residents’ appeals are still pending in court or have only recently been decided, Fernald has remained open and is now costing $11 million a year to continue to operate. Ergo, the guardians and advocates of these residents have conspired in an evil plot to force the state to continue to pay to run this huge and unnecessary institution.
The problem with this argument is it’s not true. The reason it costs so much per resident right now to operate Fernald is because the administration never properly downsized the center as the population there was reduced. Admittedly, this would have taken some planning and possibly the construction on the campus of group homes for the remaining residents, which could have been operated cost-effectively.
The Fernald guardians and advocates had long proposed what we considered to be a win-win approach for both the residents and taxpayers, which would have allowed for the continued operation of Fernald and other developmental centers in Massachusetts that provide intensive, federally regulated care for some of the state’s most profoundly, intellectually disabled and medically involved residents. The Fernald proposal included both the downsizing of the facility and a “postage-stamp” arrangement under which the remaining Fernald residents would continue to occupy a small portion of the existing campus while the rest of the campus was opened up to other uses or development.
The administration, however, refused to discuss or even consider anything other than closing Fernald entirely and moving the residents to other locations around the state. About 14 Fernald guardians and family members exercised their legal right to appeal the decision to move their loved ones, many of whom had spent close to their whole lives at Fernald and had benefited greatly from the expert care there.
Yesterday afternoon, I got a call from a Boston Herald reporter, who was dutifully writing up a story about this outrageous situation at the behest of DDS, the Arc of Massachusetts and the Association of Developmental Disabilities Providers (ADDP). These three organizations bring up the Fernald situation every year to lawmakers and the media in order to make the case that more state funding should go to DDS corporate providers and less to state-run programs such as the remaining developmental centers and state-operated group homes.
The Herald reporter first asked whether COFAR was supporting or working with the remaining Fernald residents. I said that we haven’t been actively involved in advocating for Fernald for several years because the closure has been in litigation, but that we believe the Fernald guardians have exercised their legal right to appeal the transfers of their wards. I stressed that while the cost per resident at Fernald might be very high right now, those guardians should not be blamed for it because it is the administration that never considered proposals described above to downsize Fernald and operate it cost-effectively. I also said it is incorrect to consider that closing Fernald will eliminate all costs of caring for these people. It will still be expensive to care for those residents in the community, I said, adding that no one knows the real cost because no one has ever done an independent study on it.
I added that the administration never agreed even to negotiate the downsizing and postage-stamp proposals. I also provided the reporter with information about a key cost of DDS care that has not been counted in the developmental center closures: the cost of salaries of the executives running the hundreds of corporate provider agencies that contract with DDS. We have looked at the tax records of more than 250 of these contractors and found that the cost of paying their CEOs, executive directors, and other executives runs to between $80 million and $90 million a year. That’s where the waste of our taxpayer dollars really is.
I wasn’t surprised to see that very little of what I said made it into the actual story, which also made it sound as though COFAR is still actively involved in the fight to save Fernald. The story did accurately quote me as saying the state has mismanaged Fernald and could downsize it; but beyond that no mention was made in the article of the postage-stamp proposal and the administration’s failure to consider it, or of the lack of an independent study on the cost of care in the community system. And there was no mention of the provider executive salary issue.
The story, however, does include a quote from Leo Sarkissian, executive director of the Arc, about how “outrageous” it is to be “spending that amount of money (on Fernald) when there’s the existence of very good options for each of the people living there.” In other words, let’s blame the families for this. And there’s a quote from Gary Blumenthal, president of the ADDP, who termed Fernald “almost a ghost town” — a phrase that provides no valid insight into the situation at Fernald, but predictably made it into the headline of the Herald story.
Sarkissian is also quoted as saying, “Let’s move on. We have so many other important things that are issues.” To that, I’d just ask, who is it who keeps bringing this particular issue up each year?
COFAR blog 