Archive for September, 2013

Sheltered workshops under fire in Massachusetts

September 30, 2013 8 comments

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

September 16, 2013 2 comments

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

September 10, 2013 2 comments

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 birthday

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

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.

“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.

%d bloggers like this: