The big deal is that there is an enormous gap in access to healthcare for people with mental retardation, a gap that widens even further with degree of disability.
http://www.aafp.org/afp/200606…
The U.S. Surgeon General of the US acknowledged this gap in a 2002 report; this report was later acknowledged in 2006 in a paper published by CHRISTOPHER D. PRATER, M.D., and ROBERT G. ZYLSTRA, ED.D., L.C.S.W.University of Tennessee College of Medicine, Chattanooga Unit, Chattanooga, Tennessee.:
The U.S. Surgeon General has identified “glaring” health disparities in the availability of good health care for adults with mental retardation compared with the general population.2 These disparities are caused in part by inadequate compensation and a lack of experience among health care professionals in meeting the needs of this population.2 Increasing numbers of persons with mental retardation are living into adulthood, and primary care physicians are needed to direct the medical support necessary for successful community integration.
These disparities lead to the increased mortality of the profoundly disabled. With little oversight by the woefully underfunded Disabled Persons Protection Commission, and a system that has been hijacked by the vendors, is it any wonder that the families with loved ones at the facilities don’t trust a word coming from the Patrick Administration? Dr. JudyAnn Bigby, Secretary of Health and Human Services has been a leader in identifying disparities in healthcare for minorities, but is essentially forcing the very fragile people of Fernald, Glavin, Monson and Templeton into a community that is ill prepared to meet their needs, and a system that doesn’t provide oversight and support.
This is what Dr. Bigby had to say:
“This will create real choice for many people with developmental disabilities for whom the community has never been an option, all while providing equal or better care for the residents in a community setting,” Dr. JudyAnn Bigby, secretary of health and human services, said at a press conference.
Real choice? As measured by what exactly? When a population dies at a 72% higher rate once deinstitutionalized (Straus, 1999), how is this a choice? Dr. Bigby is openly advocating that multiply-handicapped people be removed from a centralized service delivery setting – much like an over-55, assisted living setting and shoehorned into a community setting that isn’t appropriate. With choice like this…don’t preach to me about “hope.” These folks don’t have any. Not with the “sham” commission recently reenacted by Governor Patrick. See this post for more on that:
I recognize that these people are not a priority. They don’t vote, and the only people who seem to give a rat’s patootie about them are their families and caregivers. It’s disheartening that the administration who campaigned on the hope of “yes we can” led to wholesale eviction of the weakest and most fragile people of the Commonwealth.
The insensitivity, and lack of attention to the safety net needed by medically fragile and vulnerable subpopulations who have no where to turn but to government really has been stunning. Some of these are the “legal orphans” aging out of foster care, the profoundly retarded, home bound elders…
I know the pro institution folks will take any chance to say why they think Fernald and the others should stay open. I thought you would be one of the people arguing that there is no reason to segregate people based on their level of disability. There is no reason why 99.9% of people with intellectual disabilities can’t live in communities just like us. The way to make sure healthcare is adequate for people with mental retardation is to educate health care professionals, not to segregate the people with disabilities.
I have been a guardian ad litem too many times for someone who needed a specialized residential school to believe that 99.9% of everyone belongs “in the community” or that education of professionals, alone, will do it.
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p>My grandmother used to say “G*d makes different models” and neither health care, living situations, nor education can or should be a “one size fits all” modality.
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p>For those who need 24 hour care, specialized living makes good sense. Now, whether Fernald and its ilk were ever the best model to deliver that specialized living, well, we could have quite a conversation.
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p>But I am of the opinion that “the pendulum has swung too far” in terms of community integration.
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p>That may surprise you – but then I have never claimed to be one to “follow the official line” of any orgnaization. That is, perhaps, the advantage of not having been on any payroll since 1981. My opinions are based on my data set, which does include first hand field experience and a distinct lack of what that same grandmother called “rose colored glasses.”
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p>I admit that I am of the opinion that the bean counters are driving the bus, not clinicians.
is what you have in spades. Thanks for your succinctly put opinion on this issue. Your experience in the trenches of human services is a tremendous asset to Blue Mass Group.
I run 9 programs for people with intellectual disabilities, physical disabilities, and mental health issues, and some with a combination of all three. They couldn’t be more different from each other. The staffing patterns are different, the physical layouts are different, the amount of nursing hours are different, the number of individuals in each program are different, etc. The thing that the people in these programs share is that they all live in neighborhoods like you and me.
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p>I need to leave. I’ll say more later.
You’ve argued consistently that the one size fits all cookie cutter model works for you. Unfortunately – it doesn’t work for people with significant disabilities. And rather than worry about “segregation” – why not put the energy into constructing a real model of service delivery that actually works for people with profound MR and multiple disabilities? After all, no one seems to mind if the over-55 population has access to assisted living residential centers, where they receive residential and therapeutic services. No one seems to mind if young people receive residential, educational, athletic and medical services on college campuses across America….so are these models “segregation?”
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p>It’s long past time for the idealogues to get out of the way, and let the people who can actually create a working service delivery system take over. Unfortunately – since the vendors won’t get “their cut” – you won’t see this happen.
And runs a bunch of successful community-based programs that care for people, some of whom have profound developmental disabilities, physical disabilities and also mental illness. Her programs are a working service delivery model. Your insinuation that Lyn is an ideologue is so far off base as to be laughable.
is someone who is “blindly partisan” and acting only on a belief system instead a rational understanding of the data. Lyn/Bean, your “successful community-based programs” are what, exactly? Do they include therapeutic/medical care and real access to healthcare professionals who are trained in DD care? The issue that I’ve raised is about the lack of access to real healthcare professionals, trained in taking care of people with MR. Trust me, you can’t just show up with your loved one at MGH. I did that one day – and the physician on duty told me that he didn’t know where to start.
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p>The cookie cutter approach doesn’t work with the profoundly impaired. At Fernald, there is access to healthcare professionals trained in their special issues – primary care, dentist, psych, PT, PT, Adapt and the swimming pool, much of which is used by community living people with MR. Once Fernald is closed – this access is gone. The people clapping the loudest of the closure of state operated facilities are the vendors and the vendor advocates like the ARCs!
I work with the profoundly impaired and have for 17 years. The people I work with see healthcare professionals in the community. We have taught them how to work with our folks. The professionals who work at Fernald will not stop being healthcare professionals when it closes. They will work in the community with individuals in the community.
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p>In terms of being blindly partisan and acting only on a belief system instead a rational understanding of the data- my data is 17 years of working with people who are profoundly impaired in the community. Day to day data, it does not get better than that.
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p>I’m sure showing up at MGH was unpleasant and frustrating. Part of what I have done in the last 17 years is to try to educate healthcare professionals about people with profound disabilities. The first time I took one of my guys who is profoundly MR and has rapid cycle bi-polar to MASS General was a nightmare. By the third visit the doctor and office staff were starting to get it. Now 10 years later I would recommend this doctor to any family member of a person with MR and a significant mental health issue.
Lyn/Bean is still “one size fits all.” Why are over-55 assisted living facilities not “segregated” or college campuses for that matter? Some people NEED centralized service delivery…and yet, your 17 years of “data” (only out in the community) tells you this is the only way to provide services?
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p>Come on. Why is centralized service delivery for the over-55, college campuses, Brooksby Village ,etc – perfect acceptable…but the profoundly impaired – who are incredibly medically fragile, have to be mandated to inappropriate residential settings where the wait for a doctors appointment can kill them?
You raise a lot of good points, but this analogy hurts your argument. Assisted living is for pretty healthy seniors, in fact, the facility can get in trouble for keeping people who are too sick. Seniors who are profoundly ill live in nursing homes or in the community, but they don’t live in assisted living.
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p>As far as college campuses, that’s not really a care delivery model to emulate – after years of “health services” going to a doctor of my choice in the community felt like the end of segregation…
There are different levels of “assisted living” residences, and you shouldn’t confuse them with the typical “over-55” community. Many of these assisted living communities provide significant medical care along with their apartments, recreational activities, dining services, etc. but no one singles them out for being segregational. Likewise for college campuses, where young people received educational, residential, medical, athletics, etc in a centralized service delivery setting. The point that I am trying to make is that centralized service delivery models make sense for certain populations and we do it all the time. It’s only called segregation when the vendors aren’t making any money at it.
I’m not confusing anything. There is one “level” of Assisted Living Residence in Massachusetts and they are not allowed to directly provide skilled nursing care to residents. From MA CMR-15 12:04 (4)
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Plus, assisted living doesn’t take Medicare as payment. ALRs are not the right comparison here, nursing homes are.
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p>As far as people only calling it segregation when private vendors aren’t making any money, once again, you’re off base. I hear what you’re saying, but to paint with such a broad brush is going to get peoples backs up (including mine, who agrees with almost everything you’re saying but thinks it could be said better).
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p>Nursing homes are segregated, there’s thousands of people who have left nursing homes in Massachusetts who refer to being “freed”. I don’t think you mean to, but you’re painting the whole community centered care movement as profit hungry animals – it’s not accurate, nor will it get folks like me to listen to you.
My aunt lived out the remainder of her life in an assisted living community in New Jersey. That’s the reason my aunt and uncle chose it; they could expect both ongoing and emergency level care. Perhaps the rules are different there.
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p>As for the comparisons – well, this is my perspective. There are a number of vendor ops that are defacto institutions, yet we don’t hear a word about insisting they close from the ARCS or the other vendor advocates. Not a word. Now, if these people really care about segregation – why aren’t they demanding that these facilities close? I think the key word is “vendor” as opposed to state run.
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p>Thanks for being open-minded, however. I do appreciate it. It’s hard to be polite when a loved one is at risk.
People are bigoted. Whether in “Caring” for the DD, not wanting them to be taunted by neighborhood kids, I ask you: who would teach their children to abuse or bully anyone? No answer desired, I don’t want to know.
Group homes are expensive: they require an employee 24/7 to be on site. I volunteered at one years ago and found the residents delightful to know. Their families were also a delight.
I spent last summer in a nursing home. I’m 53, it was better than homelessness due to my newer disability. 80% of my ward-mates were non-responsive. How would you like the RN of the day to wake you up and tell you what they were going to do to you today, regardless of your best interest. Note: it’s all about the nurse’s schedule! They have 15 people to care for, even on the day shift. I had one nurse who deliberately let one of my medications run out to make me ill.
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p> So! What are we gonna do about this? I pledge myself to the cause. Since I am physically disabled this stuff affects me too.
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p> I suggest impeaching the Governor. Probably too severe, but I value my life more than he values people. It is an attention-getter though!
since the vendors have hijacked not only the DMR and DMH, but the Governor’s office as well.
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p>I’m sorry to hear about your circumstances, and can only hope you have advocates to help you. Have you returned home? Most of our loved ones cannot speak, walk or handle essential daily living skills.
Thank you. I am fortunate to have a loving and caring family.
How did I get out? I applied to 39 communityes for affordable and accessible housing. All had waiting lists.
Oxford offered me a bed in a shared living environment. They wanted a 1 year commitment. I thought about it, but kept searching.
In my search, I was amazed by what able-bodied people considered accessible. They have no idea. I’m used to it, it happens all the time.
I finally found a place in an appartment complex in Millbury. The staff is wonderfully attentive to any issue I may have. Dolben Properties are the best!
I’m writing on behalf of the Fernald League for the Retarded, Inc.
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p>The lack of access to healthcare for persons with mental retardation in the community is an issue that U.S. Attorney Michael Sullivan took note of in his court monitor’s report in 2007, which recommended that the Fernald Developmental Center stay open. Right now, doctors are on-call 24-7 at the facilities. Once in the community, these extremely medically fragile people will have to be transported constanty to medical and dental appointments in additon to day programs and other activities. The Patrick administration thinks this is going to save money, but it isn’t.
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p>The administration and the anti-facility advocates like to talk about trends, and they use that argument to support their privatization model. Not all trends are healthy. There has been a deregulation trend for several years in this country as well, and we can see the economic mess that has gotten us into. The privatization trend is another potential disaster waiting to happen.
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p>It’s unfortunate that the pro-community folks, such as LynPB, can never seem to resist personal attacks in their comments. They also constantly use loaded and inaccurate terms like “segregated” to describe the state facilities. I hope we can all agree to debate the facts and the merits of this issue. But the pro-privatization ideology is so strong, it’s blocking out all rational discussion of these issues.
By calling Lynpb an ideologue. I’d also note that you appear to be conflating her view, which is in favor of integrating people with disabilities into their communities, with an argument for privatization, which is another matter entirely. If the state chose to open and run effective community-based programs, rather than outsource their management, I doubt Lynpb would have a problem with it.
in the third person?
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p>Either there is an eccentric new trend afoot in which people refer to themselves in the third person or there’s a sock puppet at work.
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p>Perhaps I missed something?
and thought that she meant to be in her “Bean” persona.
Isn’t that against the rules or something?
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p>Sock puppetry is not cool. The irony, however, of sock puppet advocacy on a thread devoted to advocacy on behalf of the developmentally and/or psychiatrically challenged is not lost on me. Meh.
We are two very different people. Sorry for the confusion.
And I occasionally forget to log her out and log myself in before leaping to her defense. Lynpb really is nothing like an ideologue – she’s a pragmatic person who has formed her views from many years of experience working in the field.
but awarding a “6” to humanservicer for spreading false and defamatory information without a shred of evidence isn’t exactly unlike an idealogue. After 30 years in the trenches, I echo Amber (who is a lawyer and GAL) who thinks the pendulum has swung out too far to one side. The deinstitutional-ization movement has made prisons and homeless shelters defacto institutions for the mentally ill and mentally retarded, while the shopworn “let my people go” mantra is repeated to the detriment of some incredibly fragile people. In California, there’s a peer-review study that indicates a body count. No sense repeating that here.
I think the pendulum has swung to far in the case of the Rolland Settlement. The terms of the settlement basically say that no person with MR, no matter how old, can be in a nursing home. I don’t think that makes sense.
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p>I think there are some people who are so medically fragile that they need to live in some kind of nursing home. For example most of the young adults who live in Pediatric Nursing Homes who have lived there their whole lives may need to continue to live there. If you moved them into community homes you would have to create mini institution like facilities.
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p>That being said I still think that most people who are profoundly mentally retarded can live outside of insitutions successfully. I talk from experience as someone who has provided services, has helped transfer people out of Fernald into the community, and as someone who has helped indivuals use services at Fernald. I am not a stranger to Fernald. I think the majority of the people still there would do well in the community. It would be ideal if groups that have been together could remain together in the community.
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p>I gave a “6” to humanservicer because I agreed with her/his point that we have seen a generation of people living successfully in the community.
A friend of mine who works at Fernald told me last nite that the lawyer for the Fernald families is threatening to go after the personal assets of staff at Fernald who move residents to community settings. Can anyone confirm this? I have no reason to believe my friend is making this up. Letters threatening suit are supposedly placed on bulletin boards at the institution. The federal courts have spoken. There is not “right” to keep Fernald open. There is a right to quality care, and the fact that a generation of persons with severe dd have been cared for very well in small community settings should put to bed the idea that medical care is lacking in the community.
This BS is not happening. You do understand that that can’t happen, when staff is clearly operating on behalf of the state, right? The person assets of a person acting in the line of their duty as a state employee cannot be attacked due to the sovereignity of the state. Lawyers? Anyone want to comment on a gross and open prevarication?
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p>In other words – show me the lawsuit instead of spreading this crap around here.
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p>As for the “generation of persons with severe dd that have been cared for well in community settings” is another mythic statment. While many people with MR thrived in the community, let’s talk about that generation fully and completely; how people with severe disabilities who couldn’t be cared for at home had to go into nursing home care because the facilities were closed to new admissions. Let’s also discuss the dual diagnosed, multiply handicapped removed from the facilities who are now watching TV in group homes instead of being able to utilize the grounds and swimming pool at a facility. I know of a case in Orange, MA where a young dually-diagnosed woman with MR and schizophrenia (and an unfortunate proclivity for lighting fires) was outplaced from a facility and into a group home- where she promptly burned the home down. She wound up in jail. This is community living? Let’s talk about the lack of access to healthcare – you know – the one that the surgeon general reported on in 2002, a theme that was them picked up in a paper by Dr. C. Prater. Let’s also discuss the deaths of people who have been institutionalized their entire lives due to their profound disabilities and medical fragility. There was an article about a Dever patient, a vocalizer who died with a diaper stuffed in his mouth. DMR investigators insisted that he did it himself – a client with spastic quadripalegia. His death helped trigger a very ugly House Post Audit report about the “state” of the DMR. We could also talk about those two fellows with MR in Raynham, who were found chained to radiators and tortured by their “caregivers,” That’s some fine community living. House Post Audit loved that one, too.
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p>http://www.highbeam.com/doc/1P…
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p>This was nothing new; in 1992 the DMR investigators had been found to be “not sufficiently independent” when they investigated sexual abuse at a Worcester group home.
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p>http://www.highbeam.com/doc/1P…
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p>More recently – we’ve seen a young man with MR, gang-raped and this not believed by local police. This poor young man was stalked and repeated gang raped by his tormenter, and others.
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p>http://www.southcoasttoday.com…
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p>These issues were echoed in the report authored by U.S. Attorney General Sullivan, who found:
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When your loved one can’t talk or walk – they are incredibly vulnerable.
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p>Let’s also discuss oversight. The DPPC has never been properly funded, and cases continue to rise. This issue was addressed in a 2004 edition of the COFAR voice. And let’s also discuss the absolutely inappropriate structure of the DMR investigating itself.
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p>http://74.125.45.132/search?q=…
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p>So, if you really want to discuss an entire generation – let’s say 1988-2008…by all means. But let’s do it completely instead of just proffering up the fairytales.
I’m posting this on behalf of the Fernald League
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p>My understanding there is some legal research being done to determine whether there are circumstances under which guardians could file suit against top administrators at EOHHS, DMR and Fernald for violating residents’ civil rights as a result of untimely transfers or injuries following a transfer. There has been no consideration given or intention to file a suit against staff at Fernald.
At this moment, no suit has been filed, only the treat has been made. I hope you will condemn the fernald league and their attorney for threatening the employees. This type of thuggery should be condemned, and should not take the place of principled debate about the appropriate models of care. I will ask my friend for a copy of the letter and post it on the site
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p>The cases you list are outrageous, but are not proof that community setting are unsafe. Countless tales of abuse and neglect were common when institutional settings were the dominant form of care. There are less cases of abuse in institutions today, simply because the population has dwindled to only a fraction of the total population of dd adults.
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p>I agree that nursing homes are not appropriate homes for dd adults. We should build more small home like settings in the community for them. Not simply move them back to a state institution.
so give us some more proof.
Contrary to what humanservicer is saying, no suit is being contemplated against Fernald staff.
Below are relevant sections of the letter penned by the Attorney for the Fernald families. Its pretty clear that the intent is to intimidate staff from cooperating with the placement activity. I did not publish the whole names, just the initials to protect their privacy. The letter was posted on union bulletin boards at Fernald. At least one of the persons threatened in the letter is not a “high official” but rather a union human service worker at Fernald.
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p>If anyone wants a hard copy of the letter, please email me and i will mail you a copy.
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dearjustice4all and davefromHvad:
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p> i will accept your apologies whenever you are ready. As all can see i certainly am not making this stuff up.
Please. Attorney Cohen announced that he would “research” the law against persons “for acts or failure to act which occur with the scope of their duties to protect a resident from harm and which violates the civil rights of the residents at Fernald as a result of an untimely transfer or injuries caused by a failure to treat or withhold active treatment following the transfer of a resident.” I guess if they do their jobs right, they have nothing to worry about, right? I did hear from one of the families on the conference call that when David Hart, the president of COFAR pointed out that “their numbers didn’t add up,” it was mentioned that given the “population” a certain amount of mortality was to be expected. Yeah. Good times.
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p>I wish I had a buck for every “threat” to research the law. Without a lawsuit, ya got nothing.
The pendulum HAS swung too far. It has gone beyond anything that makes any sense.
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p>The Governor is going to save money by closing “state-operated” ICF/MR facilities by opening more “state-operated” facilities? Many that have yet to be built–what savings? There are currently 1500 to 1600 state employees in this field. DMR has stated that there will be approximately 2200+ state employees in these new arrangements. No savings there. Who can guess how much transportation costs will increase when these displaced individuals who had almost all of their medical/therapy/day programs etc. needs met at the facility that will now be dependent on transport back and forth to have those needs met–no savings there. What are the costs for those needs privately (doctors, therapist, etc.) compared to those same specialists on the state payroll? I can’t believe it costs less.
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p>I know there is a portion of Fernald used to temporarily house homeless women and their children. They are also being evicted, in some cases to motels, at state expense (who knows how much). I know it is not an ideal situation for them, but I see no money saving there either.
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p>After all this is all about the money, not about what is best for these fragile people–Fernald first because the land is the most valuable–nothing more.
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p>All I continually hear from advocates for community based care is there are thousands on the “waiting list” desperate for services. This list never seems to decrease..so the Governor is going to throw these people into an already overloaded and inadequate system (it must be inadequate if the list never decreases) with only his assurances that all of there needs will be met. It makes no sense.
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p>For LynB–I have no doubt that the programs you run, in your opinion, are successful. Until all program are as successful as yours, the risks to my family member are too great. Question, where will you get the services you used to get at Fernald when it and other like it are closed? One other question, are your programs vendor or state operated?
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The service we use at Fernald the most is Tufts Dental care. When that is no longer an option we will switch to community dentists. About half the folks I serve already use community dentists. The ones that still go to Tufts go there because it is their or their families’ preferences. My programs are vendor operated.
Tufts Dental is often the dentist of choice because the dentists are trained in the special needs of profoundly impaired people. Reverse swallowing, bite reflex issues, etc. palate reconstructs, etc are among the many issues that Tufts Dental dentists see on a regular basis.