Update on our requests for cost records
After a month and a half, it’s troubling that the Patrick administration is apparently still unable to locate cost records we requested pertaining to a single community-based group home contract.
I just received a letter from the Department of Developmental Services, dated September 14, that they are in the process of searching for the documents, which I had requested on July 29. Meanwhile, the MassHealth Privacy Office in the Executive Office of Health and Human Services has been searching for these same records since August 9.
To recap, we’ve been trying to find out the sources of state funding for medical, nursing, clinical, and therapeutic services in a single DDS group home program run by the May Institute, a private provider. We have a copy of a $1.2 million contract with the May Institute, which provides for 24-hour residential services under the program for 14 individuals in four residences in the DDS Central Middlesex Area.
The FY 2009 contract, however, only provides for direct care and limited nursing services for the 14 residents. It does not mention medical, extended nursing, clinical or therapeutic services.
From what we’ve been able to determine, the administration has been basing its $20 million annual cost savings estimate in closing the Templeton, Monson, and Glavin Developmental Centers on a comparison of their budgets with the cost of community-based group contracts such as the May Institute contract. But here’s the rub. Our understanding is that the Templeton, Monson, and Glavin budgets do provide for medical, extended nursing, clinical, and therapeutic services.
Naturally, the community system will appear to be less expensive than the developmental centers if certain community-based costs are not taken into account. That’s why we want to find out exactly how much is being paid to fund those additional services to which the May Institute residents are reportedly entitled, and where that money is coming from.
By the way, we originally asked DDS on July 7 for the budgets of the Monson, Templeton, and Glavin Centers. A month later, we received a one-page document from the department with single, line-item amounts representing the total annual spending for each facility. There was no budgetary breakdown whatsoever for the facilities.
We appealed to the state’s Public Records Division for help, explaining that a budget of a state facility involves more than just a single line item. As a result, I received a second letter from DDS, also dated September 14, stating that the department was in the process of searching for the “additional (budgetary breakdown) information” I had requested.
I guess DDS considers a budget and a “budgetary breakdown” to be entirely separate concepts. Stay tuned.
The Globe gets it right on nonprofit contractors
An editorial in today’s Boston Globe begins to get at an expensive and pervasive state problem — the relative lack of oversight of the state’s nonprofit human services contracting system.
The editorial calls for more power to the State Auditor and Inspector General to investigate financial practices in this system. It refers specifically to recent allegations by State Auditor Suzanne Bump and Inspector General Gregory Sullivan of financial abuses by the Merrimack Special Education Collaborative and a related nonprofit, the Merrimack Education Center. The nonprofit, the editorial notes, is subject to “far less scrutiny” than the public collaborative, and therefore has been able to “hide” millions of dollars in extra salaries, bonuses, and pensions, according to the Globe.
But the editorial expands its focus beyond just special education. Here’s the key statement in the editorial in this respect:
Massachusetts law is generous to private contractors who take state money, whether they are nonprofit or for-profit. While government agencies are subject to full financial scrubs, private subcontractors are largely outside the purview of the government’s watchdog officials, State Auditor Suzanne Bump and Inspector General Gregory Sullivan.
As much as we like to criticize government for its lack of transparency (and believe me, we’re having our problems with DDS right now in that regard), at least government agencies operate somewhat within the reach of watchdog agencies and within the public purview via the Public Records Law.
But nonprofit and for-profit contractors are largely exempt from the Public Records Law and their records are even beyond the reach of the Inspector General’s subpoena power, for instance. Nonprofits are required to file financial information with the state’s Operational Services Divsion and the Attorney General’s Public Charities Division. But, as we’ve pointed out, the information filed with those two entities doesn’t always match up. And the information available is quite limited.
Yet, it’s not as if these contractors are concerned solely with the private and for-profit sectors in which they like to be categorized. In Massachusetts, they receive billions in state and federal human services dollars every year. The Department of Developmental Services alone contracts with hundreds of such contractors to run thousands of group homes and day programs and provide other services.
We have called on Bump and Sullivan to expand their probe of the special education system to include the entire DDS contracting system. One of the things we’d like to see investigated is what we see as an expensive and risky lease program that DDS has entered into with private contractors to develop group homes around the state. There are numerous other opportunities out there for investigation as well.
Once again, we’re waiting for the administration’s cost records
It has been more than a month since we asked Secretary of Health and Human Services JudyAnn Bigby for public records detailing the costs of specified services in a particular group home program for intellectually disabled persons in Massachusetts.
It has been almost two months since we asked Commissioner of Developmental Services Elin Howe for the budgets of the Templeton, Monson, and Glavin developmental centers.
To date, we’ve received neither set of records.
As we’ve previously noted here, we’ve been attempting to compare the cost of an apparently typical vendor-run group home program with the three developmental centers. We wanted to see whether the Patrick administration was comparing apples to apples in claiming to the Legislature in the last two fiscal years that closing the Templeton, Monson, and Glavin centers will save tens of millions in state funds.
As we reported, a group home contract, which we did receive last May from DDS, specified a yearly cost per resident of $104,400. In its cost savings analysis, the administration compared a very similar residential cost based on group home contracts with an average calculated cost of care at Templeton, Monson, and Glavin.
The potential problem with the administration’s analysis that we found in examining the single group home contract was that it specified budgeted costs for only direct-care, supervisory, and minimal nursing staff. What about the extensive nursing, medical, clinical, and therapeutic staffing that exists at the developmental centers and to which the residents of DDS group homes are entitled?
The fact that those additional medical, clinical, and therapeutic costs were not in the group home contract we examined appeared to raise the question whether the administration’s savings analysis was accurate. One immediate question was: if those additional costs are not paid through DDS contracts, how are they paid? Secondly, what is the total amount of those community-based costs that the administration may have missed in its analysis?
Once we get the answers to those questions, we can determine for ourselves whether there would be a savings or not in closing the developmental centers.
On July 29, we sent Public Records requests to both Secretary Bigby and Commissioner Howe, asking for copies of any documents detailing funding for medical, nursing, clinical, and therapeutic services for individuals residing in the community-based group home program we had selected for review. About three weeks prior to that, we had asked DDS for the Templeton, Monson, and Glavin budgets for the same time periods as the group home contract.
On August 9, I received a letter from the records custodian at EOHHS, stating that the agency was in the process of identifying the records we had requested regarding the group home contract. Last week, I called the records custodian, and was told EOHHS was still working on our request. He wasn’t able to tell me when the records would be found.
We’ve appealed to the Public Records Division for the Templeton, Monson, and Glavin budget documents. We’re close to filing an appeal for the group home contract records.
But one piece of useful information may have emerged here. The fact that the August 9 response to our request came from EOHHS and not from DDS does appear to confirm that it is not DDS, but some other source at EOHHS, that funds medical, clinical, and therapeutic services in the DDS vendor-run group home system. We believe that other source of funding is MassHealth.
In any event, it’s getting clearer and clearer that the administration wasn’t counting all the community-based costs of care it incurs when it told the Legislature there would be major savings in closing the developmental centers.
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.
DDS client’s death raises new questions about care
We reported last week that the Patrick administration was refusing to provide any information about — or even confirm — a report that a man in his 50s, who had lived at the Templeton Developmental Center, died four days after being transferred to a community-based group home.
We have since gotten confirmation of the man’s death from the state’s Chief Medical Examiner’s Office and from a newspaper obituary, and have learned that the cause was a pulmonary embolus, or blood clot in his lung. We also learned that a contributory cause of his death was a history of deep venous thrombosis, or a blood clot in his arm or leg.
We are withholding the name of the man until we are able to contact his guardian.
Although the initial report we received was that this man had been healthy prior to his transfer out of Templeton, we now know he had a serious medical condition. That, however, doesn’t fully explain why he died so suddenly after the transfer.
Given that the Department of Developmental Services is citing privacy and confidentiality grounds to avoid discussing this particular case, we have very little information to go on. We did receive a report that this man’s familiar staff at Templeton may not have accompanied him to his new residence and may not have been appropriately involved in the transfer process.
Templeton is one of four developmental centers in the state that have been targeted by the administration for closure by the end of the next fiscal year. In some cases, as we understand it, DDS has been careful to ensure that familiar staff accompany residents who are transferred from these centers as the administration phases the facilities down. But it appears DDS may not have uniform policies or procedures on whether familiar staff are made available to accompany transferred residents to their new locations.
Is it likely that this man would have died anyway, had he continued to live at Templeton? Or did the stress of the move contribute in some way to his death? Was his death the result of a medication error or a lack of proper medication for his medical condition after his transfer from Templeton? Was his death the result of any other negligence in his treatment or care? Was his death due in any way to the fact that familiar staff were not available to him during or after the transfer process?
Moreover, given this man’s medical condition, why were his familiar staff not more involved in his transfer, if it was indeed the case that they were not? He was presumably treated at Templeton for his thrombosis, possibly with anti-coagulants to prevent blood clots. There are a number of potential causes of a traveling blood clot that results in a pulmonary embolus, like the one that caused this man’s death. One cause can be long periods of inactivity or immobility — something which this person’s familiar staff would most probably have known about, but which unfamiliar staff in his new residence might not have known about. How much communication was there between the two staffs about this person’s medical condition?
Is DDS asking any of these questions? We don’t know. We have reported this death to the Disabled Persons Protection Commission in the hope that they will investigate the circumstances surrounding it.
Van crash highlights DDS oversight and protection loopholes
A van crash this week in Newton, which injured 12 adults with intellectual disabilities, highlights a lack of adequate oversight of the state’s community-based system of care.
The incident, involving a driver for a state subcontracted transportation company, also points to some apparent loopholes in the state’s current Criminal Offender Record Information (CORI) system.
News organizations around the state reported that Addis Gabriel Woldeguiorguis allegedly drove a passenger van into a parked garbage truck on Monday as he was transporting the special needs adults to a day services program in Newton. Police said they found a broken crack pipe and a plastic bag containing suspected crack cocaine in the van. Woldeguiorguis also reportedly told police he had taken two oxycodone pills four hours before the crash for foot pain.
According to The Boston Globe, Woldeguiorguis, who was charged Tuesday with driving under the influence of drugs and with drug possession, has “a traffic history three pages long in New York, with violations dating back to 1980, and a 2005 notation for possession of drugs.”
This seems similar to a situation we reported about in May in which a convicted sex offender in California violated a five-year probation there and fled to Massachusetts where he took a job driving people with intellectual disabilities to day programs.
Both cases appear to result from the fact that Massachusetts requires special needs transportation companies to check drivers’ records only in this state and to administer a CORI background check, which does not identify criminal arrests or convictions in other states. State agencies are, moreover, not currently authorized to require vendors to make use of the FBI’s national criminal background check system. Woldeguiorguis’s driving and CORI records did not indicate any problems, according to the Globe, since all of the violations occurred in New York.
There are other potential problems with the current background check system in Massachusetts. If the potential penalty for a criminal offense does not include incarceration, it does not appear on a CORI record, according to Georgia Critsley, general counsel of the Massachusetts Department of Criminal Justice Information Systems. Critsley said Massachusetts motor vehicle offenses such as OUI and Operating to Endanger appear on the CORI, whereas civil motor vehicle offenses such as speeding do not. Further, after reforms were enacted in 2009, CORI regulations appear to exempt existing state and vendor employees, who were not previously subject to CORI checks, from any additional CORI checks.
These seem like big loopholes when it comes to hiring people to care for and drive DDS clients. Meanwhile, a bill in the state Legislature, which has been repeatedly filed by Rep. Martin Walsh of Boston and which would authorize the use of national FBI background checks for people hired by DDS and its vendors, has remained in the Judiciary Committee for months.
There may be other loopholes as well. We asked Howe yesterday whether the CORI background check regulations actually apply to transportation companies that drive clients under subcontracts with either EOHHS brokers or DDS vendors. We also asked whether DDS has any policies or regulations requiring drug testing for employees of transportation companies, DDS vendors, or other DDS programs. We haven’t yet heard back.
Jennifer Kritz, communications director for the Executive Office of Health and Human Services, told the Globe her department is “conducting a thorough review of the transportation provider’s actions and performance (in the Newton crash), as well as the hiring practices related to this specific driver, in order to determine whether any action is necessary.’’
This reaction by EOHHS seems inadequate. EOHHS’s review should extend beyond the actions and performance of this particular transportation provider and beyond its hiring practices related to this specific driver. EOHHS should be looking at this point at all of the state’s background check policies and regulations, and whether all of the clients in its agencies are protected from persons unsuited to be caring for and driving them.
DDS won’t give out information on reported death
Late last month, we received a report that a healthy, 55-year-old man had been transferred from his home at the Templeton Developmental Center and subsequently died four days later at a community-based group home.
The death reportedly occurred around July 24.
As an organization that advocates on behalf of persons with intellectual disabilities and their families and guardians, COFAR has an interest in getting to the bottom of reports such as this.
Is the report, in fact, true? If so, why would a healthy man die four days after being transferred from one Department of Developmental Services location to another? The answers to these questions could help us better understand the state of care available to all DDS clients.
We posed those questions regarding this reported death in an email on July 27 to DDS Commissioner Elin Howe. In response, we received a message on July 29 from DDS General Counsel Marianne Meacham, which provided no answers and stated that personal and medical information is exempt from disclosure under the state’s Public Records Law. Meacham also cited a provision in DDS’s enabling statute, stating that records of admission and treatment to DDS facilities shall be kept private.
For reasons I’ll get into below, we intend to appeal this denial of information to the state’s Public Records Division. But first, I’d note that DDS’s reaction to our query appears unfortunately to be part of a longstanding pattern on the part of the department of secrecy concerning deaths of persons in its care.
For years, our member organization, the Advocacy Network, has tried without success to obtain notification from DDS of the deaths of former residents of the Belchertown State School and other facilities in order to arrange to pay proper respects to those people. In one case, the Network learned that the cremated ashes of a resident of a vendor-based group home in the Pioneer Valley had sat disregarded on a shelf in the provider’s business office for two years.
In their Spring 2009 newsletter, the Advocacy Network stated that DDS cited confidentiality and privacy regulations as reasons for not providing notifications of the deaths of DDS residents even when obituaries had been published in newspapers.
Edward Orzechowski, editor of The Advocacy Network News, quotes Donald Vitkus, a former resident of the Belchertown State School as saying, “‘No one ever died at Belchertown. People just were never seen or talked about again.'” Although that apparently was the case at this former state facility in the 1950s, one wonders if that situation still prevails in the DDS system.
To be fair, deaths at the Wrentham Developmental Center appears to be handled much differently. COFAR Executive Director Colleen Lutkevich notes that when Wrentham residents die, residents’ guardians are notified and wakes and funerals are held, which are attended by residents, staff, families and friends.
In refusing to provide any informaton about the reported death of the former Templeton Development Center resident, Meacham appears to have cited an exemption to the Public Records Law [M.G.L. Chapter 4 Section 7(26)] that concerns “medical files or information…(and) any other materials or data relating to a specifically named individual, the disclosure of which may constitute an unwarranted invasion of personal privacy.” She also cited DDS’s enabling statute ( M.G.L. Chapter 123B, Section 17), which states that records of admission and treatment to DDS facilities shall be kept private.
We intend to appeal this denial of information because we were not asking for medical files or medical information or for records of admission or treatment. Instead, we are seeking information about the circumstances under which a client in the DDS system died. Secondly, case law, as we understand it, holds that personal privacy rights end when a person dies.
Not only do we and our member families have an interest in learning about deaths of persons in DDS care, the general public has a legitmate interest in knowing about this as well. What if there was negligence or even foul play involved? DDS has to start using common sense and stop hiding behind false confidentiality and privacy claims in these cases.
Identifying the missing costs
The Patrick administration claims that the average per-person cost of Department of Developmental Services vendor-run group homes is less than the average per-person cost of state developmental centers for persons with intellectual disabilities.
But we’ve now identified some specific missing group home costs that we think the administration overlooked in its analysis.
An apparently typical DDS vendor contract, which we have reviewed, did not specify any psychological or therapeutic services, and only specified minimal nursing services. Developmental center budgets, on the other hand, do provide for all of those services.
This appears to be the first major confirmation we’ve been able to obtain, after months of Public Records Law requests from DDS, that the Patrick administration’s savings claims in closing four developmental centers in Massachusetts are based on an apples-to-oranges comparison. The administration has not fully responded to our follow-up questions about these costs.
I asked DDS Commissioner Elin Howe on June 16, after we had first reviewed the $1.2 million contract, whether medical, clincal, and therapeutic services were available to the residents of the program, and, if so, how those services were funded.
The email I received in response from DDS General Counsel Marianne Meacham, dated July 2, stated the following:
With regard to your questions regarding clinical services available to individuals in the particular…program site, as you know, a full array of clinical services (medical, physical therapy, speech therapy, occupational therapy, psychological, etc.) are available to the individuals in the program through community providers as needed and set forth in the individual’s individual support plan.
This carefully worded answer states only that medical, clinical, and therapeutic services “are available to individuals in the program,” but it doesn’t say how those services are funded — in other words, where the money comes from. Here’s why that is a key question:
In July 2010, the adminstration provided a cost analysis to the Legislature, which claimed a $20 million annual savings in closing the Templeton, Monson, and Glavin Developmental Centers and transferring most of their residents to vendor and state-operated group homes. In the cost analysis, the administration specified a “community residential” cost per client of $107,689. After adding an average “day services” (work and daily living skills programs) rate to that cost and an average transportation rate, the administration computed a total “community services cost” of $140,955 per client.
The administration then compared that $140,955 total community cost to an average per-person cost at the Templeton, Monson, and Glavin centers of $233,902. The administration’s conclusion was that serving a client in the community was $92,947 less expensive than in a developmental center.
After we asked DDS, starting last December, for all documents supporting its community residential cost figure, DDS provided, among other things, a spreadsheet listing total costs of close to 1,000 vendor contracts in FY 2009. We selected one of those contracts for closer review and asked DDS for a copy of it.
The Fiscal Year 2009 vendor contract with the May Institute, Inc. specified 24-hour staffing in a program serving 14 individuals. The contract further stipulated a rate per client of $286 per day, or $104,400 per year. This was quite close to the $107,689 community residential rate in the administration’s analysis.
However, as noted, the $104,400 community residential cost did not include clinical, therapeutic, or full medical costs of care available to community-based residents. The budgets of the Templeton, Monson, and Glavin centers do provide for those services.
On July 6, I emailed back to Meacham at DDS, asking once again how the medical, physical therapy, speech therapy, occupational therapy, psychological, etc. services available to residents of the May Institute program were funded for the residents of the May Institute program. To date, I’ve received no reply to my question.
This is why we need an independent study of the cost of closing the Templeton, Monson, and Glavin Centers.
Compelling testimony in support of a facility cost study
Introductory note:
A proposal for an an independent cost study prior to the closures of the Templeton, Monson, and Glavin developmental centers may have run into a legislative roadblock last spring, but the idea isn’t dead yet.
State Representative Anne Gobi of Spencer is continuing to push for the measure, which was shot down by the legislative leadership during the state budget debate in April and May.
A bill filed by Gobi, which would specify that the study be done by an independent, non-governmental entity appointed by the state Inspector General, was heard by the Committee on Children, Families, and Persons with Disabilities on Tuesday, July 19.
“I’ve heard from officials who would like to close these facilities,” Gobi stated in a press release, “but I have also spoken with the families of patients at these centers – and they have presented evidence that suggests that there would be no cost savings with closures, yet there would be a reduction of services.
“Frankly, I think it is best that an independent study be conducted before any further decisions are made,” Gobi added.
The Patrick administration has produced two virtually identical cost studies in closing Templeton, Monson, and Glavin, which have concluded that closing the centers will save more than $20 million annually. However, the administration’s cost analyses have been seriously flawed.
In testimony submitted on July 19 to the Children and Families Committee, COFAR noted that the administration has thus far been asked to produce after-the-fact analyses of the costs and benefits of a previously announced policy of closing the centers. An independent review of this policy is needed.
The most compelling testimony in favor of Gobi’s bill was not about the cost issue per se, though, although cost is always present as a backdrop to any dicussion about public sector services. That compelling testimony came from family members of developmental center residents. Here is one example of the testimony submitted to the Children and Families Committee:
…I would like to share with you the story of our brother, Danny Healey, and what his life at Fernald meant to him and to our parents. I realize that this letter is long and I appreciate your taking the time to read it. I have also enclosed a copy of Danny’s eulogy, which I trust will offer further proof of the benefit of residential settings for some people.
Danny was diagnosed with Down Syndrome and a host of other problems months after his birth on June 14, 1958. For fourteen years he lived in a two-family house in Somerville with his parents, grandmother, great-grandmother, and four siblings. A great-aunt and her husband lived in the apartment downstairs. Unable to speak, feed himself, drink from a cup, or use the toilet, Danny needed help with every aspect of life. Our parents cherished him and, despite the constant care that he required, they planned to keep him home forever.
Danny’s doctor, however, pointed out that his self-destructive, repetitive behaviors (gouging his ears, banging his head against the wall and windows, etc.) could lead to permanent injury or even death. He suggested firmly that Danny would be better served at a state school like Fernald. My parents were devastated. How could they send their precious child to strangers at an institution known to provide inferior care? But they trusted the doctor, so with heavy hearts they enrolled Danny at Fernald.
Two wonderful people gave them hope that they had not consigned their son to hell. The first was a middle-aged direct care worker, Mary Meaney, who had been sent to Fernald as a child and who had never known any other life. Unlike Danny, who was best served in a residential setting, Mary was someone who could have been well served in a community based group home. She promised my parents that she would protect Danny as if he were her own child, and that is what she did, for years, until he moved to Cottage 13, where he remained, surrounded by people whom he loved, until he died. The second blessing in Danny’s life was Judge Tauro, who put the entire school under judicial oversight. His action was the catalyst for a series of positive reforms at Fernald that allowed Danny to live there happily and safely for 28 years.
The direct care staff and professionals at Fernald were among the finest individuals I have ever been privileged to know. Their respect for the residents was awe-inspiring. Together they created genuine homes for some of the most developmentally challenged and vulnerable citizens of the Commonwealth. Danny thrived there, to the best of his limited abilities. Every year when we attended his annual evaluation, we would leave filled with admiration for the staff who gave unstintingly of themselves for the benefit of the residents. Because my parents didn’t drive, my siblings and I would pick up Danny for regular home visits throughout the years, and at the end of his life, when it was difficult to care for him in our homes, we would visit him at Fernald, drive him around the campus, then feed him his favorite treat of cake crumbled up and mixed with pudding. For twenty-eight years at least one of us was at the school almost every week, and we can attest, from extensive personal experience, that for people like our brother, facility-based care is the optimum choice.
As Danny weakened in the last years of his life, the rumors about Fernald’s closing became more strident and frequent. My parents were in a panic. They knew that Danny would never be able to function in a group residence and that for him the only alternative was a nursing facility, where he would pine for his friends and caregivers. They actually prayed that Danny would go to God before he had to endure such a fate. As Danny’s neurological condition worsened, the staff provided loving and attentive care until he slipped away on January 15, 2001. At his wake and funeral, which were attended by hundreds of people, we celebrated his life as well as the devotion of those who provided him with such a rich and nurturing environment at Fernald. And we were grateful to God that we never had to watch him wither away in a nursing home setting where his physical and emotional needs could never have been met.
I grieve for the families of profoundly limited individuals like Danny who watch helplessly as facility-based care is eliminated for their loved ones. I implore you to consider the value of such an option for those with severe medical and intellectual disabilities. I know firsthand what a difference it made in Danny’s life and I hope that it can be available for others who need it.
Thank you.
Sincerely,
Margaret Chisholm
Another example of testimony submitted on Tuesday to the Children and Families Committee:
I am guardian for my third cousin, Thomas Doherty (DOB 2/25/2951), a native of Woburn, MA. Tommy has lived at Templeton Developmental Center (TDC) since 1973, when he turned 22 yrs. and was discharged from a residential program where he had been since age 10.
To summarize, Tommy has been in care for 50 years, 38 of which have been at TDC, which Tommy refers to as “my school.” Tommy, an only child, was cherished by his parents, who struggled to provide safe, competent and nurturing care for their troubled, developmentally disabled son who could not be managed in their Woburn community in the 1950s and 60s. When they found Templeton, Tommy and his parents were relieved that his needs could be met in such a caring, state of the art facility with strong vocational, behavioral and physical support provided by a dedicated staff.
Throughout his adult life, Tommy has worked in the cow barn under supervision of a watchful staff. He lives with several other men in a lovely cottage, and his medical needs, which include catheterization twice daily and administration of psychotropic medication, are provided without incident. His nutritional needs are monitored, and his diet is adjusted frequently. Tommy knows staff and residents, making frequent visits to “favorites” each day.
When a beloved staff member died, Tommy delivered a heartfelt eulogy. Tommy, cognitively impaired and emotionally disabled, enjoys loving and meaningful relationships with his extended family. Tommy is puzzled by the loss of friends as they are moved from their TDC home, and he is most anxious about his own fate. His mother, prior to her death 14 years ago, requested that I be Tommy’s guardian. This is an honor, with much gratification from my relationship with Tommy. His joy in seeing cousins, however distant, is disarming. His memories of his parents are filled with delight. Tommy’s pleasures are simple…the Red Sox, the Beatles, his picture albums, a good day at work, coffee, a cigar now and then, and his home at TDC.
Mary Ann Ulevich
One more example from a non-family member:
My name is Mark Zanger. I live in Jamaica Plain and work as a Family Partner in mobile crisis intervention on mental health. I wish to register my support and evidence on behalf of H1859, requiring a study before closing the Glavin, Monson, and Templeton Developmental centers, and for S28, requiring the continuing use of state property at Templeton for the care and education of persons with intellectual/developmental disability.
I do not have a relative with ID/D, but became familiar with these
facilities while working for the Coalition of Families and Advocates. As newsletter editor, I visited all six developmental centers then in operation with families and met with staff and residents…Massachusetts has capacity for more than 100 adults with
MR/MH diagnoses at the Glavin Center, a modern facility built and staffed for that purpose. It was never an overcrowded “state school” and families there were not plaintiffs in Ricci v. Okin, and residents are not Ricci class members. The family members I met there have similar stories — their loved one was dually diagnosed as a child in the 50s and 60s and 70s, poorly served by the mental health systems of that era (which relied on talk therapy and crude medication for a population which is not often articulate about feelings or side effects), were not successful in the new group homes, and by enormous family efforts and political interventions were able to secure a place
at Glavin, where their loved ones have thrived and recovered with comprehensive and specialized treatment. Some Glavin residents returned to the community every year since it was founded, but in recent years people with more complex issues have failed expensively to make such moves.Until higher level specialized mental health services for persons with ID/D are developed and available across the state, the Glavin residents cannot be safely or economically supported in the general community or even in state operated group homes, except for a few just off the Glavin property which rely on back-up services from the regional center.
I believe that these same arguments apply substantially to the Monson Center, specializing in MR complicated by seizure disorders, and even more so to the Templeton facility, specializing in persons who might otherwise be imprisoned. Templeton is a beautiful place, a working farm with meaningful work much enjoyed by the residents, a property long dedicated to the support of persons with ID/D, and one with little potential as commercial real estate — another tactical consideration that must be brought to light if the legislature is to make wise decisions.
Many states which are reducing or eliminating
other forms of congregate facilities have in fact invested in and
expanded those, like Templeton, with a mission to serve “forensic
cases.” Some of these individuals will be in secure treatment whether DDS provides or not, and the annual cost of a prison bed (not reimbursed by Medicaid or SSI) in Massachusetts may be larger than the state contribution to an ICF/MR bed at Templeton, Glavin or Monson.It is the complexities of social accounting which drive my support for Rep. Gobi’s bill, which I personally would like to see amended to have the closure studies done independently. Even before I followed this question closely, wildly differing cost estimates, per person or per facility, were published periodically. A collection of these estimates over time would confound a Madoff accountant. On the snowy weekend of the Governor’s announcement of the plan to close four facilities, his press release included two different figures for the annual savings
anticipated, and no reconciliation. A commission appointed by
Governor Romney likewise issued several conflicting estimates.The administration has a quiet agenda to shift all state human services to Medicaid, Section 8, Food Stamps, SSDI, SSI and other federal budgets or cost shares. Leaving aside the intention of both major parties in Washington to cut Medicaid in the coming years; leaving aside the populations entitled to services who are not eligible for Medicaid or other federal services; leaving aside the dilution of specified comprehensive services under Medicaid’s ICF/MR standards; leaving aside the social accounting of what families must give up to keep multiply disabled people at home, accurate and comprehensive accounting of the costs of evicting and relocating these long-termresidents from familiar homes has never been placed before the Legislature or the public. There are individual cases and academic studies indicating that there are few if any savings to the taxpayers.
There is growing public impatience with the outsized salaries paid to private contractors when compared even with the generous benefits of veteran state managers. There is accumulating anecdotal evidence that the land purchases and contracts to build new group homes to replace state facilities, some old and decaying, some reasonably modern and efficient, are not untainted by political dealings and overpriced bailouts in the acquisition and building business — entirely separate
and obscure expenditures of low-income housing loans outside the DDS budget.In several instances, anecdotal but indicative, persons have
been moved from facilities to group homes shortly before their deaths, wasting considerable sums to break up relationships and disorient people who might have been permitted to live out their lives in longterm homes.…I would like to end with two overarching reasons to study carefully the closing of three more state facilities for people with ID/D (and in my own advice, not to do so), and to specifically reserve the property at Templeton for the future needs of this population.
The first reason is demographic. According to the Coleman Institute “State of the States” reports, more than half the clients of DDS are living with parents now 60 years old or older. This is a demographic triple-whammy (better life expectancy for disabled people; the baby boom caretakers aging; the baby boom consumers also aging into increased disability) which has already gridlocked DDS residential services. This year’s budgets do not fully cover residential services for the most disabled youth turning 22, and ArcMass has suggested a supplemental budget request for them.
To see the housing shortage issue in the most realistic terms, it is
important to compare the absolute number of persons served by DDS with the predicted number of qualified people in the Commonwealth, based upon the IQ 70 definition, two standard deviations from mean IQ. The math would suggest that DDS has reached fewer than half the eligible individuals. There are some life expectancy reasons to assume that the reality is a little better than that, but there are still tens of thousands of disabled people outside the gates (perhaps fully as many as double the present enrollment if one adds in the barely ineligible, a fatter slice of the bell curve).Some of these people are in nursing homes despite the Rolland case, some are in prisons, where DDS has no outreach; many are evident in any visit to a homeless shelter; some are transient, some are enslaved (as we learned in the “Raynham House of Horrors” case in the late 1990s); probably the largest unserved
group are quietly supported in homes and families, often those of
immigrants and minorities, to which there is no outreach, or where government services are unknown or culturally stigmatized.Our team periodically finds children and youth in all these invisible categories, and they too are part of the reason the Legislature needs careful study before closing residential options at any level.
This is simply not the time to close any viable residential options
for people with ID/D, and certainly not the ICF/MRs supported by hundreds and hundreds of families who struggled to obtain such excellent placements for their loved ones.The second overarching reason to study facilitiy closures, to delay and avert facility closures, and to secure the permanent use of the Templeton property is the proven mortality that ensues when very disabled people are moved from sheltered settings into “community settings” with increased transportation, unfamiliar and rotating staff, and waits for use of the group home van for medical appointments. You can read a summary of studies of these dangers in the records of Massachusetts by former US Attorney Michael Sullivan that I wrote when working for COFAR at this Internet address:
http://www.cofar.org/documents/safetyfacts.pdfThe definitive Shavelle et al study of de-institutionalization in
California is footnoted in that article. Shavelle found mortality 47% higher than predicted even after throwing out deaths within six months of moving, to avoid the controversy over “transfer trauma.”The most recent international meta study, by Kozma et al, advocates of community-based treatment, freely admits that outcomes (including mortality) remains one of three (out of ten examined) areas in which facility treatment remains superior to existing community-based systems studied. The other two areas where community systems all over the world are falling short are “challenging behaviors” and “overuse of psychotropic medication.” (You can read the full text at
http://www.les-pilotis.be/IMG/pdf/0906_AJIDD_Outcomes_in_different_residential_settings.pdf)I am fortunate in my job to wrestle small problems one family at a
time. I do not envy the Legislature its choices in this difficult
financial environment. We must all be penny-wise. But this is exactly when an independent study of a key decision in the largest human services budget is penny-wise, shilling-smart, and not a bit pound-foolish. To steal from the most vulnerable people served by the Commonwealth is not the right way to get through a budget crisis, even one of long duration.Why study what has been studied before? So we don’t have a concrete block or a lamp falling on someone’s car. So we
don’t parole killers who kill again. So we don’t have another Raynham House of Horrors.
COFAR blog 