But let's get back to the overall skimpiness of the plan. It has broad goals, but in key respects, it doesn't say how those goals will be achieved. It's first two goals, for instance, are 1) Help individuals transition from institutional care; and 2) Expand access to community-based long-term supports. Another goal (#4) is to “expand access to affordable and accessible housing and supports.”
One has to wonder how the administration can propose expanded access to community supports as it continues to cut the DMR budget.
There are currently thousands of people with mental retardation in Masschusetts on a waiting list for long-term care in the DMR system. The administration's plan talks about expanding access to affordable housing; but how much housing will have to be built, where will it be built, and what will it cost? There is no discussion of that.
The plan is particularly vague when it comes to the state facilities for people with mental retardation. Neither the Fernald Developmental Center, which the administration is trying to close, nor any of the other five facilities is mentioned. The closest the plan comes to saying anything about them is the statement that:
…the Plan supports the administration's commitment to shifting the focus of long-term care financing from institutions to the community.
We can only surmise that “shifting the focus” means shutting all the state facilities. But if that happens, won't the facility residents be competing with the thousands already waiting for community care? The plan doesn't get into this issue. Where are these hundreds of facility residents ulimately going to be “transitioned” to? The plan doesn't say.
The plan doesn't address these questions, and the reason is not surprising. If you shut down facilities, you worsen the overall housing problem. For some period of time, there will be less access to housing and less access to community supports for everyone. How will those problems be overcome?
The plan also states that this commitment to shift this focus from institutions is based on the 1999 Supreme Court decision, Olmstead v. L.C., in which a plaintiff sought a transfer from a state institution to a community setting. We would argue that the administration is misreading Olmstead.
As the Massachusetts Coalition of Families and Advocates for the Retarded, Inc. (COFAR) pointed out in an amicus brief in the ongoing appeals court case over Fernald, the core holding of Olmstead is that insitutional care is appropriate for people with severe disiabilities who cannot be accomodated in community settings. The Court found that three factors must be in place before institutional care can be deemed to be unjustified and community care required: 1) the determination of treatment professionals, 2) the views of the individual, and 3) the resources of the state.
The High Court also specifically stated in the decision that:
We emphasize that nothing in the ADA (Americans with Disabilities Act) or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings. (527 U.S. at 601-602)
Not surprisingly, the community vendor-first advocates never note this clear distinction that the Supreme Court drew in Olmstead.
Finally, the plan notes the “broad array of internal and external stakeholders” that helped in its drafting. All of these stakeholders are either state agency officials or members of advocacy organizations opposing institutional care. No facility advocates were invited.
Ever since Deval Patrick was a candidate for governor, the Fernald League, COFAR and others have sought to meet with him and offered to become involved in his administration's planning for care for persons with disabilities. Needless to say, we have never been taken up on our offers.
I read this initiative as allowing for more long-term care in homes instead of bundling people off to institutions as a first option, which can be very demoralizing to patients.
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p>A business colleague of mine runs a visiting nurse/home care business. She constantly advocates in allowing patients she works with as many options as humanly possible, starting with staying in the home if medical and physical conditions allow, and walks clients through the Medicare/aid paperwork to get them access to existing home care options.
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p>I do not read “shifting the focus of long-term care financing from institutions to the community” as shutting down existing state facilities at all. Unless the final plan actually calls for that, can we focus on what we know, and not speculate?
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p>Anyway, if this plan is looking to make it easier for patients to stay in their own homes or have independent housing instead of having to go into an institution (and obviously that is not the right option for everyone), I am 100% for it, if it is done right. Once you go into an institution, that’s the end of the road for most folks. It can be the greatest institution in the world but it is still an institution. Most patients do NOT want to go, and given the option, would rather have home health care, community aid, and visiting nurses as long as they are able. We have an aging population now, and we need to rethink how we work with the elderly and mentally handicapped. I don’t think this post helps illuminate the situation OR the plan from the Governor at all, merely makes accusations that have no basis.
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p>Obviously we want clarification from the Governor, and the plan must be forthcoming – after all, a bill must be filed. I am interested in what it will actually say, not what your panic button thinks it will say.
All I’m saying here is this plan doesn’t have the necessary specifics. Sure, everyone would love to stay in their own home, but not everyone can. We are all for community-based care for those who can benefit from it.
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p>This plan calls for shifting the long-term financing from institutions to the community. It doesn’t say how that will be done or what will become of the institutions. Gov. Patrick has cut funding in the current fiscal year to the instituions and major layoffs are planned at Fernald and the other facilities starting next week. A lot of people are concerned about that, particularly because they see no overall plan from the administration.
I been in Judge Tauro’s Court and at the recent Appeal Hearing – The passion on both sides of how to best care for those disabled with Mental Retardation runs hot….
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p> My brother was cared for at Fernald from age 3 to age 62
– nearly 60 years!
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p> This is an amazing tribute the the Administrators, Professional Staff, Direct Care Staff and Volunteers, many whom have passed and many who still serve after decades of dedicated caring.
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p> The motives that cannot be said out loud here, is the driver to divide the spoils of lucrative privatization contracts and the PRIME real estate that the State’s ICF/MR’s occupy, while eliminating regulatory oversight, all under the pretence that this is in the best interest of the clients residing there, that most advocates have never met.
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p> Privatization is a FOR PROFIT business – we worry about the tendency to maximize the bottom line, with minimum wage, high turn over, direct care staffing and other “efficiencies”.
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p> When we met with Ms. Bigby, and told her of our 3 decade effort to establish the standard of care at Fernald that our loved ones now enjoy with Judge Tauro’s persistence – her response was…”I’m sure you will use the same dilligence in the community setting to come….’
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p> We would like all Fernald residents to have the “fullest” lives possible – and have never opposed anyone leaving Fernald with the hope that they find the BEST placement for their loved one –
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p> But DMR- WHERE’s THE BEEF….I mean….BEDS.???.. for the most severely disabled individuals who are left?
This “work-in-progress” plan is a bit frightening. I believe I read an 18 month implementation goal. I don’t see how that is even remotely possible.
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p>The state and advocates always say there are thousands of people on waiting lists for services. In my 3 decade involvement in the battle for better services for the mentally retarded this figure never seems to change and in fact it seems to grow. It took 3 decades WITH FEDERAL COURT INTERVENTION to achieve the levels of care we now have (both community and institutional) and there are still thousands of people waiting. The battle continues. Now the state is miraculously supposed to fix all the issues (lack of housing, lack of staffing, budget constraints, high turnover, lack of training, lack of accessibility, various abuses, etc., etc.,) in 18 months! Give me a break.
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p>It would be interesting to know how many people are waiting for services because the only “choice” they have is community based and it is not adequate for the level of care required. It sure seems like steps backward not forward. Back to what it was–no choice. In 18 months thousands of people will still be waiting as the state presses on with plans to close facilities or worse, people forced into inadequate situations because a politician has decided what is best.
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p>Left in Lowell:
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p>THERE CURRENTLY IS a battle taking place in Federal court trying to keep an institution (this institution is in reality a community) from closing. THAT IS NOT SPECULATION.
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p>Your friend is one of the people/companies THAT MAKES A LIVING on our handicapped citizens. I don’t mean to question your friend’s dedication and caring, but the simple fact is BUSINESS IS BUSINESS and to stay in business the bottom line is always going to be the most important factor. Anytime profit is involved best interests are always questionable.
I work for COFAR, a statewide coalition of family groups and individuals caring for someone with mental retardation that include’s Dave’s client, the Fernald League. I’ll comment on our own blog — at http://www.cofar.org — on what the governor’s plan doesn’t do for those with MR/DD most in need of long-term care, the people with severe or profound MR and medical and behavioral complications.
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p>What I want to raise here, though, covers all the elderly and different disability groups addressed in the “Olmstead Plan.” One must applaud the breadth of vision of that — the first real new policy initiative in this area after almost two years of the Patrick administration.
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p>But Dave was not the only person surprised.
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p>There were thirty-eight members of the planning committee and nine more committee leads. They represented state agencies, private providers, and a few consumers and advocates.
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p>What’s wrong with this picture?
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p>No family members.
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p>And that is repeatedly true across the disablity groups, not just mental retardation, but also mental illnss, AIDS, seniors, and the blind. Now, some of the bureaucrats and advocates are family members, and that is how they got into the field, but that’s not the hat they wore at this table.
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p>Now lots of these people have social work degrees, and know that disability is a family issue, that aging is a family issue, that families are challenged at every level by caring for a disabled or elderly and infirm family member. And all of them have some awareness that the move to a privatized, decentralized, and “community based” system of care requires even more of families. With MR/DD, family guardians often become the only real case managers, the only functioning repository of medical records, the only consistant element in the lives of loved ones who desperately need consistancy. Same thing with major mental illness, Alzheimer’s — most of the situations of long-term care.
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p>So how far can an “Olmstead Plan” devised without family members and omitting their role actually plan?
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p>–MZanger (who forgot to log in)