Everyone who has an opinion on the proposed closure of the Fernald Developmental Center by June 2010 and three other developmental centers should remember these points:
1. The decision by Governor Patrick which was probable made by the Secretary of Health and Hunan Services, the Assistant Secretary and the Department’s Commissioner did not have to made, two weeks before Christmas. There is no judicial, legislative or other bureaucratic reason for this announcement before January 5, 2009. The only reason was to insult the residents and their families one more time before Christmas and Hanukkah.
2. At a Friday conference call to the involved families the Commissioner was challenged that her estimate of how many guardians of developmental residents would chose a community residence or, relocation to the Wrentham Developmental Center or Hogan Regional Center did not added up with the number of mentally retarded individuals involved. The Commissioner reminded the families that these people were part of a geriatric group and there would be mortality. [Emphasis is mine]
3. The whole affair (conference call, press conference and a proposed family meeting at Fernald on December 20) confirms that being a human being is not a prerequisite to work for the Executive Office of Human Services in Massachusetts.
4. One community zealot said that the announcement means that “now” the developmental center residents will be allowed to relocate. I want to remind everyone that transfers out of a developmental center were never closed in the 35-year history of the Ricci lawsuit. Admissions have been closed at the discretion of the Commonwealth and during this time the guardians of many younger mentally retarded individuals were deprived of the opportunity to evaluate this residential option.
5. The Department’s standard response is “No one ever asks for a developmental center placement.” The reason is that except for some politically connected families no families are allowed to evaluate a developmental center placement objectively.
and as I noted in a previous diary here, it came after the administration had been saying for a year and a half there there were no plans to close any facilities other than Fernald.
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p>Now, a week before the holidays, families across the state are being told their loved ones will be taken from their long-time homes. The administration seems to be clueless in this matter.
Closure Announcement – Week before Christmas (+)
by: Mav
Tue Dec 16, 2008 at 09:25:43 AM EST
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p>Everyone who has an opinion on the proposed closure of the Fernald Developmental Center by June 2010 and three other developmental centers should remember these points:
1. The decision by Governor Patrick which was probable made by the Secretary of Health and Hunan Services, the Assistant Secretary and the Department’s Commissioner did not have to made, two weeks before Christmas. There is no judicial, legislative or other bureaucratic reason for this announcement before January 5, 2009. The only reason was to insult the residents and their families one more time before Christmas and Hanukkah.
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p>2. At a Friday conference call to the involved families the Commissioner was challenged that her estimate of how many guardians of developmental residents would chose a community residence or, relocation to the Wrentham Developmental Center or Hogan Regional Center did not added up with the number of mentally retarded individuals involved. The Commissioner reminded the families that these people were part of a geriatric group and there would be mortality. [Emphasis is mine]
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p>3. The whole affair (conference call, press conference and a proposed family meeting at Fernald on December 20) confirms that being a human being is not a prerequisite to work for the Executive Office of Human Services in Massachusetts.
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p>4. One community zealot said that the announcement means that “now” the developmental center residents will be allowed to relocate. I want to remind everyone that transfers out of a developmental center were never closed in the 35-year history of the Ricci lawsuit. Admissions have been closed at the discretion of the Commonwealth and during this time the guardians of many younger mentally retarded individuals were deprived of the opportunity to evaluate this residential option.
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p>5. The Department’s standard response is “No one ever asks for a developmental center placement.” The reason is that except for some politically connected families no families are allowed to evaluate a developmental center placement objectively.
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p>Mav :: Closure Announcement – Week before Christmas
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p>Tags: Fernald, Christmas, Hanukkah, (All Tags) :: Add/Edit Tags on this Post
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p>Closure Announcement – Week before Christmas | 1 comments | Post A Comment
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p>by: you @ soon
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The timing here is indeed insensitive at best, (0.00 / 0)
and as I noted in a previous diary here, it came after the administration had been saying for a year and a half there there were no plans to close any facilities other than Fernald.
Now, a week before the holidays, families across the state are being told their loved ones will be taken from their long-time homes. The administration seems to be clueless in this matter.
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Disclosure: I do some work for an organization where Mav is on the board. In that capacity, I read DMR’s full press release — it is on their website — Friday. They had done a lot of preparation: lined up quotes from legislators and the ARC of Mass. — both very unusual in a press release from an executive department in Massachusetts.
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p>They have a clue, and the clue they have is that this is a desperate and shaky scheme. The unusual coalition of budget-cutters, private providers, civil rights lawyers, and advocats for people with mild-moderate MR/DD that has pushed for facility closings in the past is falling apart under the pressure of cutbacks and declining state revenue. This is a four-year plan announced by a governor with two more years in office. Governor Romney, backed by the same coalition, announced he would close all six developmental centers, and could not close one. It is not a done deal.
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p>Friday’s releases require new spending of $45,000,000 before anticipated savings. It is not a done deal that legislature will support that, or that the revenue picture will encourage them to. The residents have rights under a federal court decison; the plan — unlike most DMR non-planning — has no court-imposed requirement.
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p>The facility closers are one step ahead of the law and a half-step ahead of the economy, and they know it.
You are correct in saying that it is not a done deal! There are many Fernald families that are not going to move!
There is no equal or better for many of us. Fernald is our sons, daughters, brothers and sisters home.
This fight is far from over.
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p>Merry Christmas and Happy Hanukkah to the Patrick Administration!
The state wants to get out of the business of taking care the mentally retarded/developmentally disabled. Instead of coming out and saying that they try to convince you that all they are really trying to do is help your family member have a better life in the community. (I think Patrick said “move them to a ‘better’ setting.) I shook my head as I read the comments from the administration: “Choice” really means no choice for guardians. Words like “segregation” are used (especially by vendors such as ARC) to describe life at Fernald and the other facilities but instead it really describes the life my brother would have in the “community.” Last time around with this closure business, the placement team identified a group home in a city housing project for my brother. A staff person who was familiar with the home told me about a time that she visited the home to work with the clients. She was sitting with them on a picnic bench outside when neighborhood thugs cut through the yard. When she asked them what they were doing there the direct care staff told her not to make eye contact or talk to them and said that they needed to move the clients inside right away. This staff member told me that when she was sitting on the picnic bench she counted 20 bullet holes in the back of the building. The location is on a busy street and my brother has no awareness of his own safety, especially around cars. Between the crime and the traffic, my brother would need to be locked inside for his own safety. This is what the state calls “integration into the fabric of the community?” It would be hysterically funny if it weren’t so sad. My brother goes for van rides and meals in the community at least once a week. He and his peers attend special events every month. They get out more into the community than those poor folks that are locked into some house or apartment or housing project such as the place that had in mind for him. The irony is that the group home my brother lives in on the Fernald grounds with 6 others is slated to become a state-operated group home after the “closure” so that he could go to bed at night in a facility and wake up in the “community” only with far fewer services. Sort of like Cinderalla’s carriage that turns into a pumpkin at midnight.
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p>What I find so valuable is that there are so many pairs of eyes watching how the residents are treated at Fernald (staff and visiting family members). They report everything and if someone is not doing their job or a resident was put as risk – you hear about it and the word goes out to the management there and to guardian’s at the Fernald League. Who is watching and reporting what is happening behind the four walls of these group homes? Family members can’t be there all the time.
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p>These issues are so important and are worth fighting for. I agree with MAM, this is not a done deal by any stretch. The state will soon realize that by announcing that they are going close the other facilities they have actually lit a fire under a lot of guardians who will join forces with the Fernald families to fight the closures. Believe me, they are going to have their hands full.
My 60 year old uncle has been a resident of Fernald for 40 years. It is his home. He enjoys the companionship of his housemates and familiar staff, participates in gatherings at the activity center and, as his health permits, in outings into the larger community such as supervised dining and shopping excursions, attendance at holiday fairs and entertainment events year-round, and participation in the Special Olympics. The Fernald is geographically accessible for his family to visit him there or to take him home for visits. As he has developed age-related medical issues that have compounded congenital handicaps forcing him to become less ambulatory, however, his ability to get out into the larger community has decreased and his comraderie with his Fernald community has become even more important to him.
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p>I’ve been a nurse for 26 years. I am familiar with the level of care provided to individuals with MR in group homes in the community through my encounters with clients from those homes who visit the emergency department where I work, visits to such facilities, and through a family member’s regular encounters at these homes in the course of providing a contracted service to them. They cannot meet the level of care that my uncle requires and already has at the Fernald. At Fernald, he has nursing and medical services onsite, has physical, occupational and dietary therapy onsite on a regular basis, is monitored regularly by psychiatric/behavioral specialists, has a workshop where he works daily and a pool which provides buoyancy to allow him to get out of his wheelchair and be more active on a twice weekly basis; furthermore, there is immediate access to social workers, MR specialists, and financial/benefits experts to help his family navigate medical, social and financial matters on his behalf. He has a private room which is important since he doesn’t understand personal bounderies: he becomes agitated and even aggressive if others touch his belongings, yet he feels free to take anything he desires without understanding that it may belong to someone else. The services he enjoys at Fernald will be available only on an “as needed” basis in the “community”—when they are available at all. When we toured another facility, we were told even there that he could not be guaranteed twice weekly pool access even though he is a member of the Ricci group entitled to “equal or better care” and pool access is important to both his mobility and to his recreation. I read a local newspaper comment by someone in an advocacy group for the MR/Developmentally Disabled who favored closure of the Fernald. In the article, they showcased an individual with MR/DD who works as a “bagger” at a local supermarket. The article said, “in the community, they have wider opportunities. They can work as bagboys, attend outings and socialize”. My uncle doesn’t have the physical or mental ability to be a bagboy; besides, he already has a job he likes—and ample opportunities to socialize. He has far more at Fernald than a group home can provide.
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p>The governor is not doing my uncle any favors by displacing him from his home to a setting that cannot meet his needs as well as his current situation. He is not providing my uncle with “opportunities to be part of the community” by ripping him away from the community that has been important to him for decades. The governor and his administration has not been courageous enough to defend my helpless uncle; they should at least muster the courage to speak forthrightly and admit that this is a financial decision, not a humane one.
And one size, one paradigm does NOT fit all. This uncle will be at risk.
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p>Our family had to leave public education because a “one size fits all” model ruled in our town – and that “one size” was not one that fit our child.
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p>Ultimately, this attitude of “one size fits all” may move interchangeable widgets down assembly lines, but does NOT serve human beings that are one, two, three or four “standard deviations” from the “one size fits all norm”.
Let me get this right. For the past twenty years the state has refused to allow profoundly disabled people into Fernald and other state institutions. Yet the proponents of Fernald claim that these institutions are the only settings that can care for the profoundly disabled. If that were the case then wouldn’t scores and hundreds of parents and advocates be beating down the doors to get into Fernald? The reason they are not clamoring to get in, is because a generation of adults have been cared for quite well in the community, in highly staffed and effective small group home settings. Likewise, every study that has followed residents from large facilities to community settings has shown that the residents and their guardians are pleased with the level of care in the group home. Just ask the families whose loved ones moved out of Belchertown and Dever state schools.
I have been banging my head against the wall here. There is no reason why people with profound disabilities should live in segregated institutions. They can successfully live in the community like their brothers and sisters. They have been doing it for at least 20 years.
By way of disclosure, I work for the Fernald League.
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p>There are many reasons scores of parents and advocates are not beating down the doors to get into Fernald. One is that opponents of the insitution have been very effective in spreading the myth in the media and elsewhere that Fernald and the other state facilities are “outmoded,” that they are “segregated,” that they are “warehouses.” Many people do not understand the tremendous improvement in services and conditions that U.S. District Court Judge Joseph Tauro brought about in the state facilities as a result of his oversight of the DMR system from the 1970s to the 1990s.
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p>Moreover, most families and guardians of persons with mental retardation are not going to try to beat down doors that the state says are closed to them. Like anyone else in their situations, they are often overwhelmed with the problems they are facing and will accept whatever services or supports are made available to them. But, once they get those services, they will put up a fight if someone says they are going to take those services or their homes away from them.
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p>I’m not sure what studies you are referring to in saying everyone is pleased with care in the community-based group homes. You may be referring to consumer satisfaction surveys, which DMR uses to gauge community care and which are well known for being limited and inaccurate in terms of measuring true conditions. As David Royse notes in “Research Methods in Social Work” (Thomson Brooks/Cole 2008): “The vast majority of published consumer satisfaction studies show that clients almost invariably report high levels of satisfaction.” Citing another researcher, Royse adds that the high satisfaction rates come from clients who “have little choice of facility, type of treatment, or practitioner.” (p. 301)
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p>The fact is that there is far more oversight of real conditions in the state facilities than will ever be possible in community-based group homes. U.S. Attorney Michael Sullivan’s report to the U.S. District Court in March 2007 expressed strong concern about higher levels of abuse and neglect in the community system than in the state facilities. That’s one of the key reasons Sullivan recommended keeping Fernald open to Judge Tauro and a key reason the families and guardians at Fernald are fighting to keep that facility open as well.
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Several others have answered this comment but here are my comments.
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p>Let me expand my 5th paragraph. The Department of Mental Retardation does not allow guardians to evaluate Fernald for their wards as a residential options. I know of only one well connected person who was successful in relocating a sibling from the midwest to Fernald. First then Commissioner Morrissey offered the services of an area director to tour community residences for a week. Later the father and the sibling toured Fernald on their own and selected Fernald. A regional director rejected the idea but was over ruled by the Commissioner.
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p>Recently another well concected person was asked “How can you refuse a community placement, if you have never toured a house?” He accepted a series of community tours and selected a placement at one of the other facilies. However it is one of those designated for closure in 2013.
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p>Another little known fact is that prior to Judge Tauro’s ruling in April 2005 no facility resident who moved into the community was allowed to return to the facility if they or their guardian did not like the community placement. The department would help the person to relocate and try another community placement but returning to the facility was not an option. I can count on my fingers and toes the number of individuals who were allowed to return under the cover of darkness mostly because their health became a concern.
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p>Now the Department tells guardians, “Yes, the placement failed, but we are a lot smarter today. Please let us try again.” We can all understand parents are reluctant to put their child’s life at risk a second time.
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p>I and all advoctes who urge the facilities as a choice agree that most mentally retarded individuals do live well in community residences. However there is a small number (about 4%) for whom living in a facility is the least restrictive option. You and I have the option of living in a townhouse, a condiminium, a community residence, an assisted living facilty or a nursing home or a retirement community. If we have otions, why don’t the individuals with mental retardation have the same options? The option of evaluating a facility and the oter living options objectively.
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p>Please, do not confuse satisfaction question surveys that are conducted in the presence of the individual’s direct care staff with questions like “Are you satisfied?” with objctive question surveys like “How many times did you receive your medication late during the last week?”
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p>This week, a Fernald resident celebrated her 80th birthday and she has lived at Fernald for 64 years. Since the Fernald campus has a low speed limit like all retirement communities, this person rides an electric wheel chair everywhere. Does anyone think she will have this travel freedom in a community residence?
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p>by Mav
I would like to know why there is a waiting list for families waiting for services for their disable child? I believe there are over three thousand families out there looking for services in the DMR system. With all the positive press about the community why haven’t these family been given the opportunity of placement by now? If this administration does not want to open up admissions in the facilities why haven’t they opened admissions in the community for the families that are looking for it?
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p>mam