Archive
A ‘thank you’ from Patrick Costa
A funeral mass was held November 26 for Patrick Costa, a longtime resident of the Fernald Developmental Center, who died on November 19 at the age of 49. Below is a letter written in Patrick’s voice by his guardian, Ann Witham, who read it at the mass for Patrick. Ann is a former Fernald employee who agreed to be Patrick’s guardian after his mother died. She also managed the Fernald chapel for the Rev. Bill Leonard, who has been the pastor at St. Jude Parish in Waltham in addition to his Fernald Chaplin duties.
My Dear Family and Friends,
During my time on earth, I could not talk; I never learned how to read or write or spell; or how to type or use a computer. But my life has changed. I’m with God now and as long as He’s ok with it, I can do almost anything, including writing this thank you letter.
The first thing I want to say is a big thank you to all the folks at Fernald for caring for me for almost forty years. They gave me the best they could and I am truly grateful for their efforts. It was not easy for me to leave that home, but in the end, it turned out to be a very good thing for me. When the time came for me to move here to the Wrentham Developmental Center, you went to a lot of trouble to make sure that Heffron “B” was really ready for my friends and me. You even took extra time to fix the few little things that somehow got overlooked the first time around.
Patrick Costa
My friends and I were warmly welcomed into our new home. It seemed as though everyone involved in our care – from direct care staff to clinicians and everyone in between, took the time to get to know each of us as individuals and to learn first-hand what each of us liked and disliked. You saw abilities and possibilities, not just disabilities; potential, not just limitations.
You found out that I liked to walk and made sure that I got to join a walking program and participate in Special Olympics where I won a medal. How proud and happy that made me feel! I really liked that special green suit I wore for the occasion and showing off the medal to my friends. I enjoyed going to the pool and you made sure that I had enough swimming trunks for these outings. I am so grateful for your supporting me in all my athletic endeavors, and for finding alternative activities when exercise was no longer possible for me.
Thank you for taking the time to make sure I ate my meals slowly so I would not choke. Sometimes it was a real challenge just to be sure I chewed before I swallowed, or, to make sure I did not snitch something from another’s plate. I must admit though, I did manage to succeed a couple of times and thoroughly enjoyed it.
You learned to read the visual ways and sounds I used to tell you what I wanted or what was wrong. Somehow, you knew that when there was a lot of commotion in the apartment, I would need to “get away from it all;” and spend some quiet time in my room. You even made sure that I had a special chair to use for relaxation.
Going to Adult Ed was a favorite activity for me. I was thrilled when I could sign a card with assistance. When I could no longer get to the program, you made it happen right in my apartment. That’s what the world would call “really great customer service.”
Van trips were also very special to me. I especially liked going to the restaurants that went the extra mile and texturized our food so we could eat our meals there. Thank you for taking the time to plan and organize those special “nights on the town.”
To all who stayed with me while I was in the hospital and at The May Center and back at my apartment, I owe so much. Your presence gave me more comfort than I can tell. It was wonderful to wake up and see a familiar face there with me and to hear your voices reassuring me that all was well. You knew the severity of my condition, but never let it discourage you from being upbeat with me. Special thanks go to Keith, my long-time friend and companion. During the last days of my life, Keith watched out for me, protecting me from “strangers” he did not know, keeping things where he thought they should be and making sure staff was always paying attention to me. A special thank you to new friends from Steward Hospice. Their care, compassion and concern for me as a person went far beyond what I expected. Even Keith could not prevent their welcomed presence in my life during my final days.
Mark, I know distance and family matters made it very difficult for you and Beth to travel to visit. I know you were in constant contact throughout the years, and that the distance did not separate me from your thoughts and affection. I tried so hard to wait for you, but Jesus came to bring me to my forever home and I had to go with him. Please take care of yourself. Your wife and your children need you.
I owe a very special debt of gratitude to Jim Devin for bringing Ann, and sometimes Marilyn, to visit with me. Jim and Ann, I knew you were both there shortly before I died, and I felt your love and took it with me when Jesus came to bring me home. And, last but not least, thank you to Father Bill for coming here on his day off to lead you all in prayer. Father Bill, I’m going to ask God to bless your ministry and to let you have calm seas, fair skies and a string of “keepers” for all the coming fishing seasons.
My friends, I hope you do not grieve too long for me. My spirit lives on and is oh so happy now with Jesus and my mother and all my friends and relatives who went before me. I will never forget you and will always pray for you. I pray God will wipe the tears from your eyes and hearts and that his peace will console, bless and always be with each of you.
With much love and gratitude,
Patrick
State’s decision to lease Glavin land for $1 raises questions
For years we’ve heard from the administration that it’s necessary to close the Glavin Regional Center and three other developmental centers in Massachusetts because the centers have become too expensive to operate.
But if these closures are about saving money, why has the administration agreed to essentially give away 69 acres of state land at Glavin to the Town of Shrewsbury? In agreeing in August to lease the land to the town for $1 a year for the next 25 years, the state will forego potentially millions of dollars it would have gotten from the sale of that land.
Our main question really is this: Why has the administration reached this deal with the town outside of what would normally be a formal and deliberative process to determine the best options for reuse of the land? The 69 acres, which include soccer fields and farmland surrounding the Glavin Center, comprise at least 62 percent of the total Glavin campus.
For the past eight years, the state has been involved in a painstaking and often contentious reuse process with the City of Waltham over the 200 acres at the site of the Fernald Developmental Center, which has also been targeted for closure. That process has brought parties from all sides to the table, and has involved public hearings and a report by a planning consultant.
No such reuse process has yet occurred at Glavin, and yet a decision has already effectively been made about the disposition of a majority of the acreage at that site. It’s a decision, moreover, that is a great financial deal for the Town of Shrewsbury, but not for the state, which is supposedly so strapped for cash that it has had to evict what were hundreds of longtime residents of the developmental centers from their homes.
Here by the way, is what Governor Patrick had to say this past May about the reuse process at Fernald:
Everybody’s on it (the Fernald reuse process). All the interests, all the factions, and that’s how it should be. I know the city has expressed interest in buying it (a portion of the Fernald land). I don’t think the state’s in a position to give it away. But I think selling to the city, some or all of it, is certainly an option.
So, the state is not in a position to give away any of the Fernald land, yet it is in a position to give away the Glavin land? And why, in the case of Fernald, are all the interests at the table whereas, in the case of Glavin, the only interests at the table were the state and the town?
Both Glavin and Fernald have been targeted by the administration for closure, over the objections of most of the family members and guardians of the residents of those facilities. The administration has repeatedly claimed to the Legislature that it would save up to $40 million a year in closing the Fernald, Glavin, Monson, and Templeton developmental centers. Yet the administration and other opponents of the centers have repeatedly opposed an independent study of the cost of closing those facilities.
The $1 lease arrangement at Glavin stems from a home rule petition that was presented by Shrewsbury to the state Legislature in May. The lease involves both a 15-acre tract that has housed town soccer fields for many years and a 54-acre tract of farmland. The Legislature approved the lease and the governor signed the bill in August.
We’re not opposed to preserving the land at Glavin as farmland or as soccer fields. But we question why this lease arrangement for 69 acres of land was done outside of a formal disposition process for the land and why it was done in such a seeming hurry.
We’ve filed Public Records requests with the state for records concerning plans for the reuse of the Glavin property. We’d like to know what’s going on.
DPPC faults care plan in group home resident’s death
A state investigative agency has concluded that a Tyngsborough group home resident died last year as a result of having ingested an inedible object, and that there was sufficient evidence to conclude that his death was due to a lack of adequate supervision by caregivers.
The 50-year-old man, who had formerly lived at the Fernald Developmental Center, had reportedly ingested a plastic bag
The March 29, 2012 report by the Disabled Persons Protection Commission, which was obtained by COFAR, concluded, however, that there was insufficient evidence to identify when or how the man had obtained the material he ingested, or whether he was in his group home, day program, or being transported between the two when he ingested it. The report also appeared to place the blame for the lack of supervision on the fact that the man’s plan of care, also known as an Individual Support Plan or ISP, had no requirement that he be kept in sight by staff at all times.
The 50-year-old man had lived in the group home for about a year after having been transferred there from the Fernald Center. According to sources, the man had a history of ingesting foreign objects, a condition known as pica.
The July 6 death of the resident is one of two cases of sudden death involving former developmental center residents, both men in their 50s, which COFAR first reported about last August. COFAR also reported about the case of another man who died suddenly of a blood clot in his lung in a Tewksbury group home on July 24, four days after having been transferred there from the Templeton Developmental Center. An investigation of that death is apparently still ongoing.
Both Fernald and Templeton are among four developmental centers that have been targeted by the Patrick administration for closure.
The March 29 DPPC report leaves many questions unanswered about the Tyngsborough group home resident’s death, including whether the man’s ISP was changed in a significant way after he left the Fernald Center, and whether his level of supervision in the group home was less than the level he had received while at Fernald. There is an indication in the report that the man’s ISP was changed in September 2010, apparently after he moved to the group home, to remove “target (presumably inedible) items” from mention in the plan. Much of this discussion, however, is redacted in the report.
…the appropriate DDS designee review the above noted additional finding of risk pertaining to (blank) and ISP language and determine what, if any, action should be taken to identify within a person’s ISP those specific items known to be ingested by the person, as a means to minimize or eliminate the risk they pose.
In a third case about which COFAR recently reported, a 51-year-old resident of a Northeast Residential Services home died on February 7, 2012 after having been sent back to his residence twice by Lowell General Hospital. That man had formerly lived at the Fernald Center as well.
It’s budget time — time to blame the Fernald families
The Massachusetts human service vendors are at it again — blaming the families of Fernald Developmental Center residents for the state’s budget problems.
In an online email to members this week, Gary Blumenthal, president of the Association of Developmental Disabilities Providers, once again resorts to misleading statements about Fernald’s operating cost in order to stick it to family members and guardians of the 14 remaining residents there.
Here’s what Blumenthal says about the Fernald families in his message, which discusses a $10.2 million supplemental bill filed by the Patrick administration to keep Fernald operating:
While the state is still intent on closing Fernald and three other state institutions, the final closure date is uncertain as the last 14 families attempt to hold out, hoping against reality that they can force the state to reverse it’s closure decision.
Despite the families being offered “equal to or better services” per federal Court Orders, the last Fernald families are using every available delay option available, urged on by anti-closure ideologues who still think they can force the state to leave Fernald open for the lifespan of the remaining 14 individuals.
First of all, through their own volition, these families are exercising their legal right to prevent what they see as the unjust eviction of their loved ones from their long-time home.
Moreover, in at least three of the 14 cases, administrative judges in the Patrick administration itself have ruled that the guardians demonstrated that care would not be better in the new locations proposed by the Department of Developmental Services for those residents.
That’s why these cases have dragged on. The administrative judicial decisions have been taken to state Superior court by both the administration and the 11 guardians who didn’t win their administrative appeals. That is their legal right. But Blumenthal and the ADDP have choosen to castigate the families and unidentified “anti-closure ideologues” for somehow bringing the state to its knees fiscally.
We suppose Blumenthal is referring to COFAR as an anti-closure ideologue. It’s true that we oppose the administration’s planned closures of Fernald and three other state developmental centers, which we believe provide critically needed care to some of the state’s most severely and profoundly intellectually disabled residents. But who are the real ideologues here?
We recognize the importance and need for community-based care for the majority of people with intellectual disabilities in Massachusetts. What we have long argued is that the developmental centers are a necessary part of the continuum of care. It is the ADDP and their state-funded vendor members who are the pro-closure ideologues. They argue that the state should abdicate its responsibility of caring for its most vulnerable citizens and hand the entire business over to them.
In furtherance of this aim, Blumenthal has to bend himself into a pretzel logic-wise, and, as we said, make misleading statements about Fernald’s operating cost. He implies in his message that if Fernald were closed immediately, the $10 million in supplemental funding would somehow be re-invested in the community system of care.
Yet, in the same message, Blumenthal admits what we’ve been saying for years — that the state has “reneged” (his word) on its longtime promise to re-invest funding from the developmental centers into the community system. Thus, Blumenthal knows full well that were Fernald to be closed tomorrow, that $10 million would not be invested in the community. The money, or a good portion of it, would follow the residents themselves to their new locations, wherever they might be. The community system as a whole would not benefit in any way.
Further, as they do every year at budget time, Blumenthal and the ADDP single out Fernald and discuss how the per-resident cost there has “skyrocketed.” It’s true that cost has skyrocketed. But what Blumenthal doesn’t say is that’s what happens when you drastically reduce the population of a care facility. The fixed costs get spread out over a smaller and smaller base of residents.
Despite the photo of an abandoned building at Fernald rising out of the weeds that runs atop his message, Blumenthal erroneously makes it sound as though the remaining residents are living the high life because the cost per resident there has risen. As one of the 14 guardians wrote in an email in response to Blumenthal’s message:
Based on what he (Blumenthal) has to say about the “evil 14”, you’d think we were having a blast, loads of fun and just a grand old time!
Also, just once I’d like to see a picture of one of Fernald “homes” like Malone Park or a cottage, or our beautiful chapel, not a building that hasn’t been occupied for 35 years!
You’d think I be use to this by now, but I guess not.
The Globe tells half the story about Fernald
A front-page article that ran Thanksgiving Day in The Boston Globe depicts with great sensitivity the lives of four men who were moved out of what was then the Fernald School 40 years ago and have lived ever since in the community.
The problem is that the piece, by Globe columnist Yvonne Abraham, implies that the Fernald Developmental Center of today remains the same over-crowded, poorly run institution that it certainly was for these men when they lived there from the 1950s through the 1970s. At the very least, the story neglects to mention the dramatic improvements that were made in the conditions at Fernald and elsewhere after the federal court assumed oversight in the 1970s of care delivered in Massachusetts to persons with intellectual disabilities.
And the story mistakenly implies that only community-based care is appropriate for the residents of Fernald and other state developmental centers today.
From the all-caps headline (“CELEBRATING THE GIFT OF BEING FREE”) onward, the article paints Fernald unrelentingly as a dark and isolated prison. While that was true up through the 1970s, the untold story is that Fernald and the five other remaining developmental centers in Massachusetts today are state-of-the-art facilities that are highly integrated with their surrounding communities and serve a population that needs their high level of services.
Abraham, however, doesn’t seem to want to discuss that part of the story. At first, it wasn’t entirely clear to me why she portrayed Fernald in such a uniformly negative light throughout the story. Not only is there no mention in the story of the improvements at Fernald since the 1970s, but there’s not even any mention of the fact that Fernald and three other developmental centers in Massachusetts have been targeted for closure by the Patrick administration. Or that guardians of 14 remaining Fernald residents oppose the closure and have kept the facility open for almost a year and a half beyond its scheduled closing date after having filed administrative appeals of the transfers of their wards from the center.
Why not mention all of those things that have been going on at Fernald currently and in recent years and place the story of the facility in a modern day context? It would have been a more interesting story, I think, had Abraham noted the contrast between the four men who are thankful today that they were able to leave Fernald, and the 14 guardians who today believe Fernald is the best place available for their loved ones.
It was only as I was nearing the end of Abraham’s piece that I came across a paragaph that made clear to me what appears to be her agenda. She stated:
The world has caught up with (the four men who left Fernald and a former worker who arranged for their move in 1971 to a group home outside of Fernald.) The goal now is to keep people with disabilities in the community, to help them realize their potential and enrich their surroundings.
Yes, it was now clear that this article was yet another in a long line of journalistic paeans to “community-based” care for people with intellectual disabilities. State-operated institutional care — bad. Community-based care — good. That’s the over-simplified storyline onto which too many journalists seem to feel the need to grasp, while ignoring the subtleties of recent history and even federal law.
Community-based care is the goal for many, but not for everybody. The U.S. Supreme Court, in Olmstead v. L.C., recognized that for some people with the most severe and profound levels of intellectual disability, institutions such as Fernald may well provide the most appropriate care.
Moreover, the community system today does not live up to the utopian ideal that Abraham’s piece sets for it. I’m sure that three of the former Fernald residents in Abraham’s story do live now in a “sweet bungalow” in Hyde Park, and that they do have a “good life,” in which they go to day programs where there is tai chi, singalongs and crafts. I have no doubt that Abraham was struck in spending time with these men by “how much of their potential was squandered” at Fernald 40 or more years ago and by “the joy of the lives they’ve salvaged” in the community.
But while there are many success stories in the community system, that largely privatized system is beset today with widely acknowledged problems of high turnover and poor training of direct-care staff, and abuse and neglect. At the same time, state contracts worth hundreds of millions of dollars held by vendors to run community-based group homes are poorly overseen by the state, resulting in the potential for widespread waste, fraud, and abuse in their business practices. The media in this state have not been covering those issues, but the media in New York State have been. (See this and this.)
We think it is a tragedy that the Patrick administration apparently views care for the intellectually disabled in this same simplistic light of institution-bad and community-good, and is shutting the four developmental centers in budget-cutting moves. We are waiting for the day when the media take a more nuanced view of this issue, and at least recognize that there is another side to the story.
We strongly urge Abraham and other journalists to visit the Fernald, Glavin, Monson, and Templeton Centers, all of which are steadily being emptied of their staff and residents, before it’s too late. They will see for themselves the wonderful level of care that takes place in those centers, and will note that there are no young, high-functioning residents like Albert, Curtis, Richard, and Joe, left in them today.
Guardians looking for answers in DDS client deaths
The guardians of two intellectually disabled men in their 50s are grappling with the mystery of why each man died suddenly in the past two months in state-operated group homes in the Department of Developmental Services’ northeast region.
Neither guardian yet wants either their name or the name of their ward to be publicly revealed, but both guardians are trying to find out what happened to their wards.
One of the guardians, who I’ll call Anna, said her uncle, who was 54, was healthy when he was transferred on July 20 from his long-time home at the Templeton Developmental Center to the group home in Tewksbury. He died four days later.
In that case, the Chief Medical Examiner listed the cause of death of Anna’s uncle as a blood clot of unknown origin in his lung. But Anna, who is a former nurse’s aide, is not convinced that the listed cause of death is correct. She said the Medical Examiner’s report is inconclusive and the Medical Examiner is still waiting for toxicology results.
Anna said her uncle had had a blood clot in his leg about a year before the move (deep venous thrombosis), but the problem was cleared up. Other than that, the only problems he had was a hernia and he was going blind in one eye. He had worked every day in the dairy barn at Templeton.
After the thrombosis diagnosis, Anna’s uncle had been on a blood thinner called Coumadin, but he was then taken off that medication at Templeton without Anna’s knowledge or consent, even though she is his guardian. It’s not clear, though, that that contributed to his death. There may have been an error involving some other medication that he was taking.
Anna said the staff from the group home had spent about a week at Templeton with her uncle prior to the move, but she is not sure whether any familiar staff from Templeton accompanied him during the transfer to the new residence. She said, though, that her uncle had been active after the move and had told her he was happy and excited to be there. The residence is brand new and is beautiful, she said. Suddenly, four days later, she got a call that he had died. She has no idea how that could have happened.
State Senator Stephen Brewer of Barre has asked DDS to investigate the death of Anna’s uncle, and has asked that further transfers to the Tewksbury group home be halted until the investigation is complete.
In the second case, a former Fernald Developmental Center resident swallowed a plastic garbage bag in a group home in Tyngsborough on June 21 and was taken to Lowell General Hospital, where he underwent surgery. He died approximately two weeks later on July 6. The cause of death is listed as aspiration pneumonia. The 50-year-old man had been living in the group home for about a year.
The man’s sister, who we’ll call Nancy, had been his guardian. She said she is concerned that the staff at the Tyngsborough group home wasn’t properly supervising her brother, who had a tendency to ingest foreign objects, a condition known as pica. “Someone wasn’t paying attention,” she said.
Nancy said she would like to push for a bill in the Legislature that would prohibit staff in group homes from holding second jobs. She heard this was the case in Kevin’s group home, and that there were staff there who weren’t getting enough sleep.
Both of these guardians are dealing with the still fresh grief of the loss of their loved ones. We offer them and their families our deepest sympathy and our condolences. We hope they get the answers they are looking for and will continue to try to help them do so.
Second sudden death reported after a transfer to a DDS group home
We’ve received a report of a second intellectually disabled man who died in the past two months after being transferred to a community-based group home from a state developmental center.
In this second case, the 50-year-old man died suddenly of aspiration pneumonia and a bowel obstruction on July 6, according to the City of Lowell Clerk’s Office, where the death certificate is on file.
According to sources, the man, who had a history of ingesting foreign objects, died after swallowing a plastic shopping bag in the state-run group home. He had reportedly lived in the group home for about a year after having lived for most of his life at the Fernald Developmental Center.
We are withholding his name until we can obtain permission to use it from his guardian.
A staff person with the Disabled Persons Protection Commission said the man’s death is under investigation, but would not comment on the cause of death.
Sources said the staff at the Fernald Center had been aware of the man’s tendency to ingest foreign objects, a condition known as pica, and had watched him closely to prevent him from doing so. We have received reports that the level of supervision in the group home regarding the man’s pica condition was not as high as it had been at Fernald.
We reported earlier this week about another man who died suddenly of a blood clot in his lung in a group home on July 24, four days after having been transferred there from the Templeton Developmental Center. Both Fernald and Templeton are among four developmental centers that have been targeted by the Patrick administration for closure.
In both cases, the men had been transferred to state-operated group homes operated by Northeast Residential Services, a division of the Department of Developmental Services. DDS has refused to discuss or provide any information about these deaths, citing confidentiality and privacy regulations.
We have raised concerns about at least one other incident involving potential lack of supervision in a Northeast Residential Services group home. In that case, a resident of a Norteast Regional Services home in Chelmsford left the residence unsupervised in May and attempted to rape a pregnant woman who lived next door.
State Senator Stephen Brewer of Barre, whose district includes the Templeton Developmental Center, said in an email to COFAR that he had been made aware of the death of the former Templeton resident and has asked DDS Commissioner Elin Howe to investigate it. Brewer said he has also asked Howe to halt further transfers to the group home until the investigation is complete.
We think DDS needs to come out from behind its confidentiality veil and take a fresh look at the level of oversight and supervision in its community-based system of care.
Judge rules against Fernald transfer
A state administrative judge has thrown a new hurdle in the path of the closure of the Fernald Developmental Center, ruling that moving one of the remaining 14 residents out would not be in that resident’s best interest.
In a June 9 decision, Administrative Law Magistrate Kenneth Forton ruled that the resident, identified as Daniel O., would not receive improved services and quality of life if he were moved, as planned, to the Wrentham Developmental Center.
This is the first appeals case to be decided in favor the remaining Fernald residents, whose guardians have appealed the transfers to the state Division of Administrative Law Appeals. The appeals have already kept Fernald open a year beyond the administration’s planned closure date; and the administration appears to be projecting that the Center will stay open at least another year as a result of the ongoing litigation.
But before the Association of Developmental Disabilities Providers once again rushes in to blame the guardians of these intellectually disabled residents for the cost of delaying Fernald’s closure, let me pre-emptively make a few points:
1. As the guardians’ attorney, Stephen Sheehy, has pointed out, the appeals are not intended to keep Fernald open. They are based on a state law, which says that the state must show that a resident’s services and quality of life will be improved if he or she is to be transferred to another location.
In the case involving Daniel O., the administrative magistrate has concluded that he will not receive improved services or quality of life as a result of the move to Wrentham, at least under the circumstances established by the Department of Developmental Services. If DDS can demonstrate that the move will be in Daniel O.’s best interest, his guardian will not object to it, Sheehy says.
2. It is DDS, not the guardians, that is responsible for the cost of keeping Fernald running for the 14 remaining residents while the appeals are pending. DDS has continually refused to discuss longstanding proposals by the guardians and other advocates for a settlement of the dispute.
For years, we have proposed a “postage stamp” arrangement for Fernald under which new, cost-effective housing would be provided in a reduced section of the campus for the current residents, while the remainder of the campus was developed for other uses. A compromise based on the postage-stamp idea would end the entire litigation process and allow the state and the Fernald guardians and families to move forward with a cost-effective plan for the future.
Sheehy has stated that DDS remains uninterested in negotiating any type of compromise settlement. The adminisration has even refused to discuss proposals for saving money during the appeals process by consolidating the remaining residents into one building or location. Right now the residents are dispersed among several buildings on the campus.
3. The ADDP has repeatedly inflated the current cost of operating Fernald, stating erroneously that the state is spending as much as $1.3 million per month for the remaining residents there. In fact, the $1.3 million is an average figure for care throughout the entire current fiscal year, during which there have been as many as 70 residents at Fernald. The reason for the per-person cost at Fernald has risen is solely due to the mathematical fact that the number of residents left there has steadily declined. It is a reason to look for more cost-effective ways to operate the Center, but DDS inexplicably refuses to do.
4. The ADDP has wrongly stated that the continued operation of Fernald and the other developmental centers for a small number of people is taking away funding for thousands of people in the community. This is comparing apples to oranges. Most of the people in the community system don’t have the high level of needs that the developmental center residents do. Even if the centers were all closed tomorrow, the state would still have to spend a much larger-than-average amount of money per person to care for those former residents elsewhere.
Think of it this way: A university with 30,000 students buys 80 helmets for the football team. The ADDP is effectively arguing that this is unfair — the school should be buying helmets for everyone. It’s a false argument. Not everyone in the school needs a helmet; in fact, only a small minority need them. If the school, out of a misguided sense of fairness, decided not to buy the helmets for the team, it wouldn’t save money in the long run.
A pattern of denigrating Fernald
Opponents of Intermediate-Facility-Level care in Massachusetts have repeatedly denigrated the Fernald Developmental Center during the past two years as part of a campaign to encourage the shutdowns of that facility and three other state-run developmental centers in Massachusetts for people with severe intellectual disabilities.
Our review shows a pattern in the tactics used by the opponents, which have included repeatedly publicizing inflated figures on Fernald’s per-person cost and falsely characterizing the care at Fernald and other developmental centers as outmoded or obsolete. The ironic purpose of the campaign has been to close the centers as fast as possible without conducting any meaningful cost studies.
The organizations most directly involved in the campaign against Fernald include the Association of Developmental Disabilities Providers and the Arc of Massachusetts. Joining them last year was the Governor’s Commission on Mental Retardation, which the Fernald League noted had previously been reconstituted by the Patrick administration to lobby on behalf of the developmental center closures.
The record appears to show that the efforts to spread misinformation about Fernald have been effective in bottling up cost studies, which would have actually pertained to the three other developmental centers marked for closure. The misinformation has also been damaging to the reputations of guardians and families of the Fernald residents.
Fernald and five other developmental centers are the only sources in Massachusetts of ICF-level care, which must meet federal standards for staffing and supervision. The Patrick administration has targeted the Fernald, Monson, Templeton, and Glavin centers for closure, starting with Fernald, by Fiscal Year 2013. Fernald, which was scheduled to be shut last July, has remained open pending the outcomes of administrative and court appeals filed by the guardians of 14 remaining residents.
For at least the past two years, the ADDP and the Arc have focused during state budget debates in the Legislature on the alleged cost of maintaining Fernald. Our review shows that during this year’s budget debate in April and May, leaders of those organizations repeatedly made inaccurate claims about Fernald’s per-person cost of operation that were as much as 70 percent higher than the most recent projection by the Department of Developmental Services.
That same month, the Governor’s Commission on Intellectual Disability cited a $1.3 million cost per month at Fernald in calling for rejection of that same cost study. This number was unsupported as well in the Commission’s letter.
(By the way, the only publication listed on the Governor’s Commission publications page on its website is the administration’s 2009 developmental center closure plan, which the Commission didn’t even write — the document was written by DDS.)
Meanwhile, as the ADDP and the Governor’s Commission were citing those unsupported cost claims for Fernald in 2010, Sarkissian of the Arc of Massachusetts was claiming erroneously that Fernald and the other developmental centers were providing inferior care to community-based facilities. In an op-ed article in The Waltham Tribune, Sarkissian variously termed Fernald and the other developmental centers “decrepit,” “archaic,” “outdated,” “Dickensian,” and “inferior.”
In the op-ed piece, Sarkissian raised issues from the 1960s and earlier about sexual abuse, military experiments, and other issues at Fernald that have not been current for a half century or more.
Last week, I wrote to Blumenthal, asking him to publicly disavow the inflated cost figures for Fernald that he and his organization cited this year. He declined to do so, saying the cost figures had been provided by DDS. The question we still can’t answer is whether DDS itself knowingly publicized inaccurate figures on Fernald’s cost.
It’s about the care model
A disturbing incident involving an attempted rape of a woman by an intellectually disabled resident of a community-based group home last month can teach us all a valuable lesson.
We’ve been in the midst of the wrong debate here about care for people with intellectual disabilities. We really shouldn’t be having a debate between “community-based” care versus institutional care. What’s really at issue here is the care model for these people in Massachusetts.
Bear with me for a moment.
On June 3, The Lowell Sun reported that a resident of a state-run group home in Chelmsford walked out of his residence, went next door and attacked a pregnant woman as she was sitting in her living room with her husband and three-year-old daughter. The man managed to tear off Amy Hillman’s shirt and jump on top of her before he was pulled away by Hillman’s husband, James.
The group home resident, Tholda Chhom, and James Hillman ended up in the front yard, where Chhom continued to charge at Hillman before running back to his residence just before police arrived, according to witnesses. Chhom was later charged with assault and attempted rape, and has been placed in a “more secure state facility,” according to The Sun.
Meanwhile, the Hillmans and their neighbors have been left asking questions. Will Chhom be allowed to return to the group home? Why were the Hillmans previously told that Chhom did not have violent tendencies, even though he frequently used to yell out of his window at passersby?
The Hillmans, in fact, were so concerned about Chhom, prior to the May 8 incident, that they built a stockade fence around their yard. According to James Hillman, Chhom appeared to be left all day long in his room. But on the day of the attack on Amy Hillman, the staff at the group home reportedly didn’t even know he had left the group residence.
It would be tempting for us to say that Chhom should never have been in a community-based group home; he should have been in a develpmental center, where, at the very least, it would have been more difficult for him to have gotten out out and to attack a resident in the community. But that argument may miss the real point here.
What people like Chhom are missing in the community system — even in state-run community residences — is an intensive care model that meets the federal standards set for Intermediate Care Facilities. ICF-level care, which happens to exist only in the developmental centers in Massachusetts, stipulates that residents receive onsite clinical, medical, and nursing care and full-time supervision. Not everyone with intellectual disabilities needs this level of care. Only a small fraction of them do. But Chhom would appear to be one of them.
That’s why we’re so upset that the Patrick administration is shutting down four of the six remaining developmental centers without replacing the ICF care model available in them. We don’t want the big old buildings there either. It’s the ICF care model we want to preserve for those who need it.
We think the current residents of the developmental centers should be able to stay in their current locations in the most cost-effective residential settings, while receiving the same level of care from their familiar staff. That might well mean they would live in small group homes on the campuses — the “postage-stamp” idea. Meanwhile, other people in the community, such as Tholda Chhom, who need that level of care, should be able to receive it as well.
But the administration is seeking to eliminate the ICF model and replace it with care under which the ICF standards have been waived. It’s referred to as community-based care, but it should really be labeled “waiver based” care, because the standards are lower. Direct-care staffing levels do not have to be as high, clinical and medical personnel can “float” among different homes in geographic regions, and medications can be administered by people with less training.
What does this mean for the safety of neighborhoods around the state where thousands of community-based group homes exist? What does it mean for people like Tholda Chhom, if there will no longer be an ICF-level facility one day to accept him? Will he simply be thrown into prison?
Once again, let me be clear. I’m not trying to make an argument here to preserve the six developmental centers as they exist today, although no doubt we’ll continue to be accused of that.
Go ahead, call it all community-based care. Just keep the care model and let the current residents of the developmental centers stay in their current locations with their familiar staff. And finally, provide the opportunity for ICF-level care for all who need it, such as Tholda Chhom.
COFAR blog 