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DDS challenge to mother’s guardianship of her son dismissed
The mother of an intellectually disabled man, who has been locked in a dispute with the Department of Developmental Services for several years over her son’s medical needs, will be able to remain as his guardian, according to a probate court agreement reached last week.
A Middlesex County Probate Court judge last week signed off on the dismissal of a year-long effort by the DDS to remove Patricia Feeley as guardian of her 27-year-old son, Michael. DDS had filed a petition in probate court in November 2012 to appoint James Feld, an attorney, as Michael’s guardian, even though Feld had never met Michael.
The DDS’s long-running dispute with Feeley, a COFAR Board member, has centered around Feeley’s contention that Michael, who has type 1 diabetes, needs a residential care setting with 24-hour nursing. Feeley has been trying for years to find a suitable residential placement for her son, who has lived at home his entire life. DDS has taken the position that Michael doesn’t need round-the-clock nursing.
DDS signed a stipulation to dismiss its challenge to Feeley’s guardianship during a probate court hearing last week, according to Stephen Sheehy, an attorney representing Feeley. Sheehy said he believed that DDS “came to the hearing prepared to dismiss the case because they recognized that Pat (Feeley) was doing a good job as Michael’s guardian and this was not a proper forum to deal with a dispute over a (residential) placement.”
In filing its original petition to remove Feeley as guardian, DDS had argued that Feeley was not acting in her son’s best interest in rejecting residential placements for him that the Department had offered. The Department’s petition also cited excessive “clutter” in Feeley’s home as a reason for removing Feeley as guardian. However, DDS did not allege any neglect or abuse on Feeley’s part, and even acknowledged she is devoted to her son.
Feeley said this week that she was glad of the dismissal of the guardianship challenge and hopeful “that somehow Michael will be offered a placement appropriate to his needs. He has been waiting for six years.” She added that, “I hope DDS will realize and take this (dismissal of the guardianship petition) as an affirmation that Michael’s needs are Michael’s needs. That’s what this is all about, not what DDS wants.”
Feeley added that DDS has never produced a clinical document to back up its contention that Michael does not need 24-hour nursing care. Feeley, however, did provide the court with a May 28, 2010 letter from a physician at Children’s Hospital in Boston, who wrote that Michael’s blood glucose spikes at times “for no apparent reason,” and that “it is not possible to predict when that might occur.” The doctor’s assessment continued that, “A nurse needs to be present and able to attend to Michael’s needs at any time to avoid a delay in Mike receiving appropriate medical intervention.”
Feeley said her son requires as many as seven injections of insulin per day. He also has a profound intellectual disability, is non-verbal and is unable to dress or bathe himself. Feeley, 65, who works as a part-time clinical lab technician and is a certified nurse assistant, currently administers the injections herself, monitors Michael’s blood glucose, and personally provides all other care at home for him. Michael’s extensive care needs have prevented her from working full time.
We are happy that DDS has finally realized it brought its dispute with Pat Feeley over the care of her son to the wrong judicial forum. Why DDS subjected Feeley to a frightening, year-long battle to retain guardianship and why the Department subjected taxpayers to the expense of an unnecessary probate court battle are troubling questions.
Based on what is apparently the only clinical document submitted in the case — the letter from the Children’s Hospital doctor — Michael does appear to need 24-hour nursing. We hope the outcome of this guardianship challenge finally spurs DDS to do the right thing and find a placement appropriate to Michael’s needs.
The system continues to fail the most vulnerable in the Templeton case
It seems that as events unfold in the wake of the alleged fatal assault of an intellectually disabled man at the Templeton Developmental Center in September, the system continues to fail everyone it was intended to protect.
Last week, Anthony Remillard was found competent to stand trial in connection with the death of Dennis Perry whom Remillard allegedly assaulted while both were in the Templeton Center’s dairy barn. As of this week, Remillard was being held without bail in the Worcester County House of Corrections.
We’ve already written here a number of times about our concern that Remillard was inappropriately placed at Templeton due to his apparently high level of dangerousness, and was not under sufficiently close supervision while there. However, given that Remillard is himself intellectually disabled, it seems to us that the Worcester County House of Corrections is an equally inappropriate place for this 22-year-old man.
Bonnie Valade is the mother of Tony Welcome, a Templeton resident who has himself had some previous scrapes with the criminal justice system and spent time at the same county jail facility now housing Anthony Remillard. She maintains that jail was wrong for her son, who she said was abused there, and will be equally wrong for Remillard. In an email, Valade had this to say:
My son was badly beaten (at the Worcester County House of Corrections) simply because he put his arm around an inmate saying ‘hello.’ The other inmates took everything we brought for him including his radio. He was sexually abused. They put him in a suicide cell just to keep him away from the population. If anyone knows about a suicide cell…it contains nothing not even clothes, only their underwear.
People with intellectual disabilities need clinical and other therapeutic services. They don’t tend to receive those services when they end up in correctional facilities. And they do end up in correctional facilities more often, it seems, than people of normal intelligence.
A recent article on the website Disabled-World.com notes that intellectually disabled people constitute “a small but growing percentage” of suspects and offenders within the American criminal justice system. While they comprise between 2 and 3 percent of the general population in the country, they represent between 4 and 10 percent of the population in prison and an even larger portion of the population in juvenile facilities and jails.
Intellectually disabled people like Anthony Remillard and Tony Welcome need to be in places that provide them with supportive supervision, structure, and security. In many key respects, prisons provide none of those things. It’s hard to imagine that the behavioral issues that Anthony Remillard apparently had that led to the alleged assault on Dennis Perry are going to be dealt with in a positive way where he is now. And the fact that he has been found competent by a judge to stand trial in the alleged fatal assault means he could end up in prison for the rest of his life.
As has been pointed out by others in this case, the system failed Dennis Perry, and now it is failing Anthony Remillard. In both cases, it does not appear that sufficient supportive supervision, structure, or security were or are being provided.
Unfortunately, we see the potential for more of these systemic failures as Massachusetts and many other states continue to cut staffing at facilities such as Templeton, which currently meet strict federal standards of care. We’ve asked for a legislative hearing to examine, among other things, whether a major phase-down in staffing at Templeton in recent years resulted in the apparent failure to adequately supervise Remillard there.
Templeton and countless other facilities like it are being closed around the country in the name of deinstitutionalization. The closure process has not resulted in better lives for everyone, however. We are creating a largely privatized system of care in this country that in many respects provides less supervision, structure, and security than before.
Even the most ardent proponents of privatized, community-based care acknowledge that the community system isn’t working very well. In a recent op-ed piece, the president of the Massachusetts Association of Developmental Disabilities Providers, referred to the “funding disaster that has governed private programs” that now serve most of the people with disabilities in the state. The quality of the care provided by these private programs reflects that funding disaster. The programs are rife with poorly trained and poorly compensated staff and with the consequent problem of abuse and neglect.
And what then happens to the Anthony Remillard’s who are caught up in a system of care that cannot adequately serve them or protect others from them? In more and more instances, they end up in a much worse institutional system — the prison system.
It is now well known that deinstitutionalization of the mentally ill since the 1960’s has led to a continued increase in the population of mentally ill people in the nation’s prison system. We are only starting to realize that the same thing is happening with respect to people with intellectual disabilities.
Compromise bill expands DDS eligibility to some, but not all people with developmental disabilities
After months of negotiations with a limited group of advocates for the developmentally disabled, key state legislators have approved a draft of a bill intended to expand services to people who are not currently eligible for help from the Department of Developmental Services.
The bill (H. 3715) would expand eligibility for residential and other services to people with what is now referred to as Autism Spectrum Disorder, although the legislation uses the older term “autism” to describe the group. The bill also specifically mentions Prader-Willi Syndrome – a disability often associated with autism.
While a step forward, the compromise bill appears to leave out a number of other disabilities that are eligible for similar services in many other states, such as cerebral palsy, epilepsy, spina bifida, and traumatic brain injury, and cognitive impairments such as Williams Syndrome.
We understand top Patrick administration officials were concerned about the price tag in including a large list of developmental disabilities in the bill. State law currently restricts eligibility for services from DDS to persons having an “intellectual disability” as measured by an IQ score of approximately 70 or below. Intellectual disabilities are considered a subset of developmental disabilities.
Currently, thousands of people in the state are developmentally disabled in that they are unable to care for themselves or otherwise function adequately in society; yet, they are ineligible for services from the state because they do not have an intellectual disability.
The new bill, which appears to have been hastily drafted, would extend DDS services to people with developmental disabilities, but would restrict the definition of a developmental disability to “a severe, chronic disability of an individual 5 years of age or older that is attributable to a mental or physical impairment’s (sic) resulting from intellectual disability, Autism or Prader-Eilli (the spelling should be Prader-Willi) Syndrome.” The bill was approved on October 21 by the Children, Families, and Persons with Disabilities Committee and sent to the Health Care Financing Committee.
Colleen Lutkevich, COFAR Executive Director, cited, as an example of someone who would fall through the cracks of the new legislation, a person with normal intelligence but with a severe level of cerebral palsy that precludes him or her from being able to feed or toilet himself or herself. Under the compromise bill, that person would not be considered developmentally disabled and therefore would still not qualify for services. “Services are needed at all levels for people with all types of disabilities,” Lutkevich said.
A previous draft of the bill had not specified any developmental disabilities in expanding DDS eligibility, but had defined developmental disability as a condition “attributable to a mental or physical impairment,” which results in “substantial functional limitations” in three or more “major life activities.” Those activities included self-care, receptive and expressive language, learning, mobility, self-direction, a capacity for independent living, and economic self-sufficiency.
That previous draft would have included people with disabilities such as cerebral palsy if those disabilities were severe enough to cause substantial functional limitations in three or more major life activities. As such, the previous draft would have “focused pragmatically on the challenges faced by the individual and their family, and avoided leaving people to fall between the cracks,” as one advocate described it.
We are hopeful that the Legislature and the administration will find a way to include in this bill all those who are in need of DDS services. Many other states have figured out ways to avoid leaving vulnerable people behind, and Massachusetts should be among those innovative states.
A disappointing update on sheltered workshops in Massachusetts
In a post the other day, I suggested that state Department of Developmental Services Commissioner Elin Howe talk to family members of sheltered workshop participants, who maintain the programs have provided their loved ones with valuable social and skill-building activities.
But no such luck.
In an email notice send out yesterday, Howe announced that no new DDS clients will be referred to sheltered workshops in Massachusetts after January 1. As we feared, this is the beginning of the end of this valuable program in the state.
Sheltered workshops provide opportunities for developmentally disabled people to do assembly work and other tasks in group settings, usually for small amounts of pay. But for Commissioner Howe and other opponents of sheltered workshops, these programs are politically incorrect. Sheltered workshops, they argue, “segregate” disabled people from their non-disabled peers, apparently in just the same way schools and businesses in the South segregated blacks in the days before the Civil Rights movement.
Howe said sheltered workshop providers have been instructed to develop plans to “transition their workshop services to more integrated employment options,” meaning the plan is to place all workshop participants in the mainstream workforce.
Let’s leave aside the question whether it is really valid or fair to compare intellectually disabled people, whose guardians voluntarily place them in programs that provide them with work activities, to blacks who were forced until the 1960’s in this country to drink at separate water fountains and go to separate schools from whites.
For now, I would simply argue that we’re skeptical that closing programs that provide work activities for people with developmental services will somehow increase their overall employment opportunities.
I wonder if Commissioner Howe has thoroughly reviewed a 2011 report by the University of Massachusetts Boston on trends in employment prospects for people with developmental disabilities.
While the UMass report does appear to be biased against sheltered workshops, it notes that there has been relatively little movement so far toward mainstream employment of people with intellectual disabilities from sheltered workshops around the country. The report cites as reasons for this lack of movement, “staff resistance, family resistance, and funding structures that do not adequately support community-based services for people with high support needs.”
In other words, families like and want their loved ones to stay in sheltered workshops; and it takes money to place people with Intellectual and developmental disabilities into mainstream jobs with the types of supervision and support they need. And we’ve seen, that money isn’t there. All of this seems to raise questions about the wisdom of DDS’s decision to stop all new referrals to sheltered workshops.
In fact, one of the outcomes of closing sheltered workshops, which appears to be highlighted in the UMass report, is that many, if not most, of the people who are participating in sheltered workshops will end up being transferred to what are called “non-work” settings if those workshops are closed. Non-work settings, also known as day programs for people with developmental disabilities, may or may not provide them with meaningful work activities to do.
The UMass report noted that in 2010, there were 3,700 people with Intellectual disabilities in sheltered workshops in Massachusetts and about 3,500 people in “integrated employment.” However, there were about 9,500 people in “non-work” settings. The report stated that: “State, county, and local IDD (intellectual and developmental disabilities) dollars are increasingly being spent on CBNW (Community-based Non-Work) services and not integrated employment.”
So, our concern is that when all sheltered workshop programs are ultimately closed in Massachusetts, most of the former participants will end up in day programs where they do nothing and get no pay at all. And even if many of these people are placed in so-called integrated employment, the outcomes may not all be good. Howe certainly didn’t consult the Buonomo’s about their son’s disappointing experience working at Walmart, for instance.
Given all that, it was amusing to read in her email that Howe remains “strongly committed to working with all of our stakeholders” in ultimately closing all remaining sheltered workshops in the state. I don’t recall her asking for our opinion on it or acknowledging the opinions of most family members of sheltered workshop participants.
Sheltered workshops under fire in Massachusetts
Paul Buonomo enjoys his job stuffing envelopes, collating papers and carrying out other tasks in a program in Danvers known as a sheltered workshop.
His parents, Doris and Joe Buonomo, maintain that the workshop, run by Heritage Industries, is the best such program Paul has ever been in.
But in the wake of a national debate over the political correctness of sheltered workshop programs for people with developmental disabilities, programs such as Paul’s may soon be phased out. Here in Massachusetts, the Department of Developmental Services is reviewing its policies regarding sheltered workshops and has invited state-funded providers into a working group to determine what the future will be for the programs.
Sheltered workshops provide opportunities for developmentally disabled people to do assembly work and other tasks, usually for a small amount of pay, in group settings. The charge of political incorrectness stems from the fact that the workers are not participating in the nation’s mainstream workforce and are therefore allegedly being “segregated” from non-disabled people. In many – perhaps in most – cases they also receive sub-minimum wages.
The charge that sheltered workshops promote segregation and inadequate pay to disabled people is being leveled not only by a number of advocacy groups, but by government agencies, including the federal Department of Justice and the National Council on Disability.
These are the same advocates and agencies, by the way, that have long opposed all forms of congregate care for the developmentally disabled.
But supporters of sheltered workshops, many of whom are family members of the workshop participants, argue that these programs provide their loved ones with fulfilling work and skill-building activities, and that if the programs were eliminated, there would often be nothing to take their place.
The Buonomos, for example, don’t believe their son, who is 60 and has moderate intellectual disability, is at all segregated or placed at a disadvantage because he isn’t receiving a competitive wage in a mainstream workforce setting. Heritage Industries provides Paul with a check every two weeks that varies from $2 to $10, depending on the amount of work Paul does, according to Joe Buonomo. It’s not much money, Joe says, but Paul lives in a state-operated group home and doesn’t personally have to deal with financial pressures that would necessitate a job paying a competitive wage.
Gail Orzechowski, whose sister, Carol Chunglo, 73, participates in a sheltered workshop in Orange operated by Interface Precision Benchworks, maintains that the program has “opened up her (Carol’s) world. I don’t know how they can say she’s segregated,” she adds.
The Arc of Massachusetts has stated that the impetus in Massachusetts to reconsider its sheltered workshop policies stems from litigation in Rhode Island and Oregon, which has involved the Justice Department.
In the Rhode Island case, a service provider was accused of improperly “segregating” developmentally disabled persons in a sheltered workshop and paying them sub-minimum wages. Under a settlement of the case, clients in sheltered workshops will be switched to supervised mainstream employment, which implies the end of sheltered workshops in that state.
Following the June settlement in Rhode Island, a Department of Justice official maintained that from that point on, every developmentally disabled client in the state’s sheltered workshops would receive “real jobs with real wages,” and would no longer be subject to “the tyranny of segregation.”
It’s not quite clear to us, though, how providing real jobs at real wages to all disabled people will actually happen. Like the Buonomos and Gail Orzechowski, we also don’t buy the charge of segregation when it comes sheltered workshops, in particular. Doris Buonomo says she hopes DDS will listen to outside voices, particularly those of parents like her and her husband Joe, who believe the workshops have made a positive difference in their loved ones’ lives. Thurs far, we have heard only that DDS has invited the Massachusetts Association of Developmental Disabilities Providers and the Massachusetts Arc to participate in the working group that is reviewing the Department’s sheltered workshop policies. Both of those organizations have taken positions against the workshops (here and here).
Meanwhile, family members and other supporters of sheltered workshops around the country are fighting the tide of closures of sheltered workshop programs. They contend the Justice Department and other opponents of the workshops are fighting an ideological war, but are offering no viable alternatives.
In New Jersey, the state Legislature stepped in this summer to prevent a plan by the state to close the state’s sheltered workshops. The New Jersey plan to defund the workshops met with opposition from advocates and from program participants and their families around the state, according to The Burlington County Times.
An online petition filed by Missouri AID, an advocacy organization for the intellectually disabled, states that sheltered workshops “are the only places where some individuals can work and function as productive members of the community.” The petition, which garnered 3,092 signatures, adds that:
There are countless horror stories about individuals who have tried supported (mainstream) employment, and they fell in with the wrong group of individuals, were taken advantage of, sent to prison, or ended up walking the streets alone. Sheltered workshops throughout the U. S. provide a safe environment for adults with (intellectual and developmental disabilities) to work, interact with their peers, and gain a sense of accomplishment…
The Missouri AID petition adds that “We should be creating more employment opportunities for people with disabilities – not eliminating options.”
While the idea that people with developmental disabilities should work alongside non-disabled peers and earn competitive wages is good in theory, it doesn’t always work in practice, Doris Bunomo notes. In Paul’s case, for instance, a job at Walmart ended badly for Paul even though he had gotten good performance evaluations there for a job stocking shelves, and had even earned a promotion.
Doris said Paul had been working at Walmart for a year, but an incident occurred one day in which he got “upset,” leading to a situation in which he was lectured by the manager and threatened with being fired. Doris said a support staff person for Paul did not follow an agreed-upon protocol between the residence and Walmart, and Paul did not work there again. Doris maintains that many people with developmental disabilities can work in professional or business settings with careful supervision, but that is not always possible.
“I think he’s very pleased where he is,” Joe Buonomo says of his son, adding that while Paul primarily interacts with other developmentally disabled people in his sheltered workshop, there are many opportunities in his life to meet people who are not disabled.
”I don’t think he (Paul) feels restricted in any way,” Joe maintains. In addition to the many community-based functions that Paul attends via his group home, he often helps Doris deliver books and other items to their local library and church. Also, given Paul’s lifelong love of trains, his parents have also often taken him to the freight train terminal in South Portland, Maine, where he has “made a ton of friends with the workmen” over the years, Joe says.
Orzechowski says the workshop that employs her sister Carol has helped teach her how to function socially. “Her eating habits and her other social habits have improved, and she’s developed friendships since she’s been in the program,” Orzechowski says of her sister, who she describes as having a severe level of intellectual disability. Carol, she says, also has many opportunities to interact with people in the community, including vacations that she has taken with money earned from her workshop program.
It’s far from clear what may happen in Massachusetts regarding sheltered workshops. We certainly hope that whatever is done, DDS will first consult with the families involved such as the Buonomos and Gail Orzechowski. If DDS does listen to those people, the Department will find a way to keep these valuable sheltered workshop programs running.
Bedford group home resident’s injuries raise disturbing questions
We don’t yet know what happened to cause the serious injuries suffered in late August by Paul Stanizzi, a resident of a group home for the intellectually disabled in Bedford.
The incident is currently under investigation by the Bedford Police Department, which, as of Friday, was declining comment on the matter and would not even issue a police report. But whether Stanizzi was assaulted or whether the injuries were somehow self-inflected or an accident, the incident raises serious questions about the operation and management of the residence.
Fox25 TV news reported on September 9 that Stanizzi, who is non-verbal, was found lying on the floor in his room by a staff worker at the group home, which is run by the Edinburg Center, Inc., a nonprofit provider that is funded by the state Department of Developmental Services.
After Paul Stanizzi’s mother was called by the staff worker, the family rushed to a hospital and found Paul unresponsive in a hospital bed. His brother Joe pointed out to Fox25 reporter Mike Beaudet that Paul had a black eye, a bloody nose, bruises on his fingers, scratches on his arm, what appeared to be fingerprint bruises on his arms, two larger bruises on his leg, a cut on his knee, and other abrasions.
Despite all that, the hospital was about to discharge Paul, Beaudet reported. But when Paul’s father tried to raise him from the bed, his head flopped down. An MRI subsequently revealed damage to the vertebrae around his neck. According to the Fox report, medical records noted “possible recent injury” as a cause. The doctors performed emergency surgery. It is apparently not clear whether Paul, who remains in the hospital, has been permanently paralyzed from that injury.
In a statement, Edinburg CEO Ellen Attaliades told Fox25 she could not discuss Stanizzi’s medical condition because of patient confidentiality rules. But she added, “Unfortunately there are instances when individuals with severe developmental disabilities can injure themselves through their own physical actions. To allege abuse without any evidence and without considering all factors is both wrong and unjust to his devoted caregivers.”
It’s certainly true that developmentally disabled persons, like anyone else, can injure themselves, although the extent of Paul Stanizzi’s injuries in this case points strongly toward the possibility of abuse. But even if it turns out to be the case that Paul Stanizzi somehow injured himself, what does that then say about the staffing and management of the group home? If Attaliades believes that the scenario under which Paul injured himself lets her agency and the residence entirely off the hook in this case, we think she’s mistaken.
DDS regulations require that facilities funded for the care of the developmentally disabled must be safe environments. We hope the Bedford police and the Disabled Persons Protection Commission are asking questions to determine just how safe this particular environment could have been. Did Paul haven a history of self-injurious behavior? If so, how carefully was he supervised? How long was he lying on the floor before he was discovered? Was he physically capable of injuring himself to the extent described? Were background checks done on all of the staff there? What kind of training was provided to the staff?
An online DDS licensing report on the Edinburg Center states that Edinburg’s two-year license to operate residential group homes was being “deferred” because of problems with medication administration. Other problems were noted in the report that required a 60-day follow-up by DDS, although there were no references to specific problems with abuse or neglect there.
The licensure report also stated that Edinburg had been experiencing growth since 2008 and yet was “dealing with economic decline and its ongoing impact on agency services.” The report added that the provider had lost clinical and emergency services and yet had opened two new 5-person homes in FY 2010. It seems strange that a provider would be cutting services and yet opening new homes at the same time.
Opening new facilities at the same time that services are being cut may indicate that this provider may be stretched thin on its staffing, or was stretched thin as of December 2010. (The posted licensure report was dated December 2010, which would make it about 9 months out of date. DDS licensure reports and operating licenses are valid for two years, meaning that a new report should have been posted on the website in December 2012. We have pointed out in the past that many of the licensure reports posted on the DDS website are out of date.)
Fox25 stated that Attaliades, the Edinburg CEO, told them that Paul Stanizzi is considered “part of The Edinburg Center family and his health and well-being are their primary concern.” We hope that is the case, but a thorough investigation is the only way to be at all certain of that.
We and others have long pointed out that care in widely dispersed group homes in this and other states is very difficult to monitor. Earlier this year, U.S. Senator Chris Murphy of Connecticut called for a federal investigation “into the alarming number of deaths and cases of abuse of developmentally disabled individuals in group homes.” Unfortunately, the Massachusetts DDS, in particular, does not appear to have placed a high priority on the safety of the provider-run care system that the Department funds.
The community-based, group home system in Massachusetts needs to be more tightly overseen, and the experience of Paul Stanizzi is one more in a long line of disturbing incidents that demonstrate that need.
The story of a remarkable woman
I never met Joanna Bezubka, who lived at the Fernald Developmental Center for 39 years and then spent the final seven years of her life in a state-operated group home in Lynnfield.
But after reading “Joanna, God’s Special Child,” a new memoir by George Mavridis, I feel I got to know her well enough that I’m sad I never will meet her in the flesh. That’s because Mavridis, Joanna’s cousin and co-guardian, has written an account of her life that makes you realize what a truly remarkable person she was — filled with charm and humor and an independent spirit.
These are qualities that many of us would not think possible in a person with a profound intellectual disability whose vocabulary was limited to about 50 words and a small range of vocal inflections. Joanna, who had Down syndrome and the cognitive ability of a two-year-old child, died in January 2012 at the age of 60 after developing Alzheimer’s disease.
Given its title, some people might think this book comes at its subject from a religious or sentimental perspective. It is neither of those. As Mavridis explains, “God’s special children” was a description given in the 1950’s by Richard Cardinal Cushing, Roman Catholic Archbishop of Boston, to individuals with mental retardation, now known as intellectual or developmental disability.
It’s not that Mavridis rejects Cardinal Cushing’s description. Mavridis is in fact a practicing Catholic who pushed hard to allow Joanna to continue attending Mass every Sunday at the Chapel of the Holy Innocents at Fernald, long after she had left the facility as a resident. It’s that Mavridis goes so much further than Cardinal Cushing’s description in telling us who Joanna really was.
George Mavridis and Joanna Bezubka celebrate her 59th birthday
Mavridis, a former president of COFAR and The Fernald League, has chronicled Joanna’s life down to some of the smallest details in a matter-of-fact, journalistic style that is all the more compelling because it deals honestly with the major issues of her life, even some of the most difficult and painful episodes. Those episodes include a sexual assault of Joanna, allegedly by staff in a group home in which she lived, and Mavridis’s dogged pursuit of the investigation of the incident.
It’s important to note that Mavridis is a strong defender of a comprehensive system of care for people with developmental disabilities, including the availability of federally regulated Intermediate Care Facilities (ICFs) for those, like Joanna, who need or needed them. Mavridis has been a central figure in the still-ongoing effort to keep Fernald open. He is also a member of the legislative committee of the VOR, a national advocacy organization for the developmentally disabled, which, like COFAR, supports ICF-level care. As a VOR legislative committee member, Mavridis organizes visits with the health aides of the members of the New England congressional delegation.
But the purpose of Mavridis’s book is not to make a statement on one side or the other in the debate over institutional versus community care. It is rather to chronicle a person’s life and to demonstrate the necessity and effectiveness of advocacy for the most vulnerable among us.
If you are the guardian or family member of a developmentally disabled person and you are looking for help in how to cope and advocate on their behalf, I think this book will be very helpful. I think it would also be helpful to legislators and others who seek a better understanding both of who developmentally disabled people are and what is involved in caring and advocating for them.
If nothing else, this book provides a detailed set of reasons for the importance of a provision in federal law, which states that family members should be seen as the “primary decision-makers” in caring for intellectually disabled persons. As Joanna’s co-guardian and the family member most intimately involved in her life, Mavridis was an a far better position to understand her needs and to act in her best interest than the bureaucrats and even some other advocates who often claimed to know what was best for her.
There is one small but telling incident in the book that illustrates that point particularly well. Joanna was a diminutive woman — only four-foot, four inches tall — and Mavridis bought all her clothes for her. He recounts that he would occasionally hear disapproving comments from Department of Developmental Services staff members that the Disney characters on the sneakers he had bought for her were not appropriate for a woman her age. “I would respond,” he writes, “that they should go to a shoe store and look for a woman’s size 2 1/2 pump with a low heel and buy them for Joanna.”
Joanna’s mother died during a heart operation in 1966 when Joanna was 15 years old. As a result, Mavridis’s mother, Stella, became her guardian, and Mavridis himself became co-guardian in 1991. In later years, Joanna’s brother Ronald Bezubka became a co-guardian along with Mavridis; but as Ronald was living in England, Mavridis remained in charge. In Joanna’s later years, Mavridis would visit her twice a week at her group home and take her to his home in Peabody every Saturday.
Throughout, Joanna’s story is told with warmth and humor, largely because of Mavridis’s clear and obvious love for his cousin. He writes that his mother “always said that I was the brother that a girl feels she could hold under her thumb, and Joanna never let me up.”
We learn, for instance, that although Joanna’s teeth had been removed and her food had to be ground, she was a “gourmet,” who “ate very slowly and savored every morsel.” At Fernald, the staff “served her first and picked up her dishes last, so she had time to enjoy her meals.” She also liked to sip coffee all day long and always had a cup with her, which she invariably perched on the edge of the table. “Many times my mother would move it back, away from the edge,” Mavridis writes, “but Joanna wold move it back with a stern look.”
One of Joanna’s favorite games with people was to ask them to cuff her shirt sleeves. “After you did it, Joanna would straighten the sleeves and ask you to cuff them again. This exercise became endless.” Her favorite activities also included playing with Lego toys and tearing paper into ever smaller pieces. Mavridis found he was obliged to carry a supply of both Lego pieces and pieces of paper with him because Joanna liked to hand out both as tokens of friendship to anyone who came by her.
Playing the shirt-sleeve cuffing game
Mavridis also speaks frankly about his own quadruple coronary artery bypass operation, which happened in the same year as the sexual assault, and the effect of his temporary incapacitation on Joanna. He also details Joanna’s physical and mental decline beginning in 2008, when she developed Alzheimer’s Disease, a condition which afflicts nearly all people with Down syndrome as they age.
Mavridis relates how sad it was for him to watch Joanna’s limited ability to communicate disappear in her final four years. She stopped tearing paper and she stopped playing with Legos and handing them out as tokens. Mavridis nevertheless was determined to make her life as comfortable as possible and bought special lift equipment for her as well as a special hospital bed and recliner.
“I bet I blinked first,” Mavridis says of this photo.
Near the start of his book, Mavridis includes a short article by a writer, Emily Perl Kingsley, about what parents go through when they first learn that their child is intellectually disabled. “When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy,” Kingsley writes. Instead, the plane lands in Holland.
“The important thing is that they haven’t taken you to a horrible place,” Kingsley continues. “It’s just a different place, so you must go out and buy new guide books and you must learn a whole new language…but after you’ve been there for a while…you begin to notice that Holland has windmills; Holland has tulips; Holland even has Rembrandts.”
“Joanna, God’s Special Child” is the story of a wonderful journey to Holland for Mavridis and his family, and of their discovery of the windmills, tulips, and Rembrandts there.
We can do better than the final DDS budget for current fiscal year
As we start the 2014 fiscal year, there was some good news, but mostly bad news for people with intellectual disabilities and their families in the final budget produced by the Legislature last week .
The bad news is that funding for state-operated care fared poorly in the final budget bill as it emerged from a House/Senate Conference Committee on June 30. As explained below, this has negative implications for corporate-run, community-based care as well.
The good news is that there will at least be a hearing on the so-called ‘Real Lives’ bill, if that flawed piece of legislation ever gets enacted. The Conference Committee did not approve the Real Lives language, which we have objected to and which had been quietly inserted into the budget bill by its prime sponsor.
The Real Lives bill’s supporters will have to go back to pushing the measure (H. 151) through the normal legislative process. The proposed legislation, which is still in the Children and Families Committee, still hasn’t been scheduled for a hearing, according to the legislative website.
The budget Conference Committee did accept the Senate’s proposed funding level for the state-operated group home line item, which is slightly better news than had the Committee accepted the House funding level. As a result, the state-operated group home line item was cut by only $1.5 million from the governor’s budget, rather than $1.96 million, as the House had previously voted.
The Conference Committee’s proposed funding for the state-operated residences is $9.1 million higher than in the just-ended fiscal year, but it apparently still represents a shortfall in the amount needed, according to the Department of Developmental Services. That is largely because state-operated group homes appear to be the preferred care setting for a large number of residents of developmental centers that have been marked for closure.
The Conference Committee also decided to cut the DDS administrative line item (which funds service coordinators) by $700,000 from the governor’s budget and cut the developmental center line item by close to $400,000 from the governor’s budget. Both of those cuts are bad news for state-operated care, and they will adversely affect the quality of community-based care.
First, service coordinators are state employees who make sure that DDS clients receiving both state and privately provided care are getting the right services. For years, their funding has been cut even as their caseloads have grown. Service coordinators are integral to maintaining the quality of care in the DDS community-based system. DDS Commissioner Elin Howe has referred to service coordinators as “the heart and soul of our agency.”
Secondly, while many proponents of community-based care may think that the continuing cuts to funding of the developmental centers is good news for the community system, the opposite may in fact be true. We’ve noted repeatedly that the money “saved” in phasing down and closing the developmental centers has not been diverted into most community-based accounts as the administration had promised.
The result is that as the developmental centers are closed, their residents are being moved into community-based care ahead, in many cases, of people who have been waiting for years for residential placements. And those former developmental center residents appear to be absorbing whatever additional funding has been put into the community-based system as the developmental centers are phased down.
For example, we understand that the last residents of the Glavin Regional Center in Shrewsbury were moved in recent weeks into state-operated and corporate-operated group homes in the surrounding area. Those former Glavin residents were clearly placed ahead of other developmentally disabled persons in the Shrewsbury-Worcester area waiting for residential care.
Some community-based line items did fare slightly better in the Legislature’s budget than they had in the governor’s budget plan last January. The Conference Committee approved a $2.8 million increase over the governor’s budget for adult family supports, a $1 million increase in autism services, and a $500,000 increase in Turning 22. The Committee accepted the governor’s budget amounts for both community transportation and day programs. The Senate had cut the governor’s proposals for both of those line items by $500,000.
The Conference Committee, however, cut the community residential line item by $13 million from the governor’s budget proposal. That still represents a $59 million increase over the just-ended fiscal year. But it appears the community system would need a far larger increase than that to begin to address the serious shortfall in care and services that the system is plagued with.
In sum, the administration and the Legislature have chosen with this budget to continue the expansion of corporate care of the disabled without adequate funding or oversight.
The state is continuing to close small, strategically located developmental centers, which provide the most intensive and heavily monitored levels of care, and to scatter the residents to inadequately monitored group homes. At the same time, the decision has been made to continue to cut funding for one of the few sources of monitoring left of the privatized system — the service coordinators.
And that privatized, community-based system itself continues to be underfunded, contravening the administration’s promised “Community First” agenda. It would seem that a state that prides itself on the care it provides its most vulnerable citizens could and should do better than that.
State-run facilities being asked to do more with less
State-operated care appears to be in increasing fiscal trouble in Massachusetts even though that type of care remains the choice of many families, including those whose loved ones have been transferred from developmental centers in recent years.
Unfortunately, the Legislature seems to be either unaware of the situation or simply doesn’t care about it.
The Patrick administration appears to be relying on state-operated residences and two remaining developmental centers to care for a large number of former residents of four developmental centers targeted for closure in 2008.
As a result, funding for state-operated residences was increased by about 17 percent between Fiscal Year 2010 and the current fiscal year. However, funding for the developmental centers has been cut in that time by the same percentage, according to the Massachusetts Budget and Policy Center’s interactive Budget Browser.
An analysis of the Budget Browser numbers by COFAR shows that as a result of the drop-off in developmental center funding, total funding for state-operated care in the Department of Developmental Services system has actually declined slightly in inflation-adjusted numbers since FY 2010.
We’ve previously noted that the funding previously provided to the developmental centers in the budget doesn’t appear to have been transferred to most community-based budget accounts. However, during that same period from FY 2010 to 2013, funding for corporate, provider-operated group homes did increase by roughly 6 percent.
It appears that the relative decline during that period in funding for state-operated care is putting strain on the state system. DDS Commissioner Elin Howe projected in April that two to three state-operated group homes might be forced to close if the governor’s proposed $7.8 million increase in funding for those residences for the coming fiscal year wasn’t approved.
Yet, in April and May, the House and Senate chose to cut the governor’s proposed increase for state-operated group homes, and made larger cuts than the governor proposed in the developmental center account. While lawmakers subsequently approved budget amendments to increase funding for some community-based accounts, administration-supported amendments to restore funding for both state-operated group homes and the remaining developmental centers were rejected by the House and Senate.
Currently, a House/Senate conference committee is considering how big a cut to make in the governor’s budget for state-operated group homes. The conference committee must decide between the House budget, which would cut the governor’s proposal by $1.9 million, and the Senate budget, which would cut it by $1.5 million. COFAR has been seeking adoption of the Governor’s budget recommendations in the state-operated group home and developmental center accounts.
We intend to ask DDS for data on the number of former developmental center residents who have opted for state versus provider-operated care. The administration projected in 2008 that state-operated group homes and two remaining developmental centers slated to remain open would accept close to 50 percent of the roughly 400 residents then remaining in four developmental centers targeted for closure. Provider-operated group homes were projected to accept the remaining 50 percent of those former developmental center residents, yielding these entities millions of dollars of additional revenue.
In the current fiscal year, funding for state-operated group homes and developmental centers comprises about 23 percent of the DDS’s total $1.4 billion budget, compared with funding for privately run group homes, which comprises 57 percent of the DDS budget.
The administration has claimed for a number of years that it is committed to a “Community First” agenda of boosting funding for corporate group homes and other community-based initiatives. That’s all well and good; but if the administration is continuing to rely on state care, particularly for those with the most severe and profound levels of intellectual disability, we hope the Legislature will agree to fund that care adequately.
Will we finally get a national background check for DDS hires?
A little more than two years ago, I wrote about a man who had served a year in prison in California for having sex with a minor before violating probation and fleeing to Massachusetts where he took a job driving people with intellectual disabilities to day programs.
I noted that this individual’s out-of-state conviction was not picked up in an in-state background check done on him in Massachusetts. That was because a longstanding bill that would require that national background checks be done of people hired to work in the Department of Developmental Disabilities system had not yet been enacted by the Massachusetts Legislature.
It’s now two years later, and the DDS national background check is still pending in the state Legislature. In the past two years, it was approved by the Judiciary Committee, but never got out of the House Ways and Means Committee.
This year the measure (H. 1674) is pending once again in the Judiciary Committee, awaiting a scheduled hearing before the committee on July 9. This much-needed bill has been filed each year going back as long as a decade by Representative Martin Walsh of Boston. It has never been clear to us why the bill has never made it through the legislative process or who has opposed it.
National background check legislation for new DDS hires has long been supported by a wide range of advocacy organizations for the developmentally disabled. We know of no advocacy groups that have voiced any opposition to it.
The Patrick administration and the Legislature appear to support national background checks in general. In 2010, the state upgraded its criminal records database to make it compatible with databases in other states and the FBI. And last year, Governor Patrick signed a bill into law (Chapter 459 of the Acts of 1012), which requires that all persons hired to work in public, private and parochial schools in the state as well as employees of contractors to the school systems and child care organizations undergo national background checks. Massachusetts apparently became the last state in the nation to impose those requirements.
However, the DDS in Massachusetts still hasn’t been authorized to require that the people whom the Department or its providers hire also submit to national background checks. H. 1674 would provide that authorization.
State regulations currently authorize DDS to require only that Criminal Offender Record Information (CORI) checks be done on individuals hired to work in both state and privately operated facilities in the DDS system. However, CORI records list only criminal arrests and convictions in Massachusetts and do not identify any convictions a job applicant might have from another state. A national background check system would fill in those potential gaps in the records of persons seeking to work with intellectually disabled persons in Massachusetts.
In enacting the requirement for national background checks for school employees, legislators maintained that such checks would prevent people with convictions for abusing children in other states from coming into contact with Massachusetts schoolchildren. But schoolchildren aren’t the only ones who are at risk for sexual and other types of abuse. People with developmental disabilities are at high risk as well.
H. 1674 appears to have numerous checks built into it to protect the rights and privacy of persons applying for DDS positions. The measure would give persons seeking DDS employment the right to inspect and contest the accuracy of out-of-state records and would require the Criminal History Systems Board to help resolve any such contested records within 30 days.
In addition, H. 1674 would require that only information from other states regarding convictions and open cases be made available to DDS or providers considering individuals applying for employment. Juvenile records would not be made available. The national background checks system would be jointly overseen by the Criminal History Systems Board, the Disabled Persons Protection Commission, and the State Police.
Clearly, this legislation is long overdue. The question is whether this will finally be the year for it.
COFAR blog 