The truth of the matter is that our communities have proven that people with mental retardation can thrive in smaller settings while accessing the medical and recreation necessary to support their needs.
While the community setting has proven successful, the argument of keeping the facilities operational has to be examined. The bottom line is that all the services provided at the facilities can be provided in a community setting. Whether it is health care, recreation, or day programs, the communities throughout the state provides these service.
Therefore, the question has to be asked. Why should the state pour millions of dollars into keeping DMR facilities opened?
There are thousands of us throughout the state that are grappling with possible cuts in service. Everyone living at facilities are being guaranteed equal or better services in the community. All of you will have that forever. There are only so many pieces of the pie. Think of us.
Advocacy is a vital component of living in a democracy. But it is time to think of the greater good. Let’s end this bipartisanship. All of us can join in advocating for quality services for the mentally retarded. But it should not be the facilities vs the community. Let us join together to work on a system that provides for the best services for every individual with mental retardation.
And that has been shown to be a reality.
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p>Again, the “one size fits all” mentality, and taking a position that “a facility” as in a residential school is never the right answer is just plain wrong. That, too, is the position of an idealogue and does not kindness to those who need the “one stop shop” of a residential option. Someo.
…but I answered this straw man polemic ’cause it bothered me that the residential option is viewed as disposable; for some it is a life saver, whether due to retardation, psychotic phases, or other intense needs that are not well met by being ferried from provider to provider and waiting in line for appointments.
in what alternative universe are you living, Ruby? Thank you for providing us with yet more talking points from the ARC, who are multimillion dollar service providers for the state. They have a vested financial interest in the outcome of facility closure and as such – shouldn’t even be at the table to discuss this issue, given the inherent conflict of interest.
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p>The families at Fernald are thinking,dear. They are thinking of their multiply-handicapped, medically fragile loved ones and looking at the community’s fragmented service delivery system, the lack of oversight, the deprofessionalized medical model and saying “no thanks.” They and the Legislature are being asked to dismantle a medical model that works for the most part…for a system that doesn’t, without a true cost/benefit analysis and without fair GAAP-approved accounting methods! The facilities have long been saddled with community and regional administrative costs and it’s time to get to the bottom of the real costs – apples to apples instead of the watermelon to cherry analysis we’ve had all these years. We should be insisting that an independent and impartial CPA firm be brought in to actually determine the costs instead of relying on the ever moving “savings target” determined by DMR administrators hell-bent on making sure that the numbers match the desire outcome. The DMR has been cherry-picking the data for years and it has to stop. Real data means the right decisions get made.
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p>But if closure is all but preordained, my challenge to you, Ruby, is to advocate for fixing the community system first. If you want these facilities to close – then make sure the system works for all, instead of the utilitarian “greatest good for the greatest number” approach. Fragile people die under a one-size fits all, cookie cutter ideology and the Commonwealth of Massachusetts should not be playing such a Darwinian game with them.
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p>Tell the Commissioner to stop letting the vendors run the system. Set up a system which allows the families to provide appropriate feedback without fear of reprisal. Right now – the vendors have the upper hand and not the families, who are the primary decision-makers for their loved ones. (Fed DD Act specifies that families are primary decision-makers)
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p>Make sure there is legitimate AND independent oversight of the community homes, instead of the chronically underfunded DPPC (which is a reactive agency only) and the “fox watching the henhouse” DMR investigators. Families need to be able to trust that someone is minding the store, and the taypayers need to know that their money is being spent wisely. It’s the OK-corral right now.
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p>Insist on MR-educated and trained medical professionals managing the medical care. Right now, some vendors are forcing families to accept scraps of attention from vendor-approved doctors (who will do what the vendor tells them) and barely trained paraprofessionals, and then threatens to evict them when they complain.
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p>Provide the appropriate menu of services for all people with MR. Tufts Dental (on the grounds of Fernald) provides quality dental care to both community-living people with MR and Fernald residents. Adaptive technology and communication support needs to be provided. Physical therapy, OT, RT, Psych – all need to be provided. Not all vendors ensure access to the continuum of care…in fact, some water down the services to make sure the bottom-line meets their aggressively under cost contract….designed to make sure they receive the contract in the first place. It’s a race to the bottom, if ever I saw one.
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p>Ensure that care-providers are paid appropriately, which would help end the cycle of turnover in these group homes. There are plenty of instances where the very well-paid vendor administrators are keeping their workers in subsistence wages, thereby ensuring the cycle of turnover, which has a profound effect on the quality of care. This is win-win for everyone.
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p>Make sure that some group homes have appropriate grounds to foster recreation. Removing ambulatory people with significant cognitive disabilities (unable to cross a street independently or with significant anti-social behavioral challenges) from a facility and grounds, where they’ve had the run of the place and placing them in a group home on a main drag is NOT true independence.
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p>Ruby – I look forward to working with you on this challenge if the closures go forward. High-five, sister.
You state that “there are only so many pieces of the pie. Think of us.”
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p>Think of who? The vendors? Do you really think that when the facilities are closed that the money that is allegedly being saved will flow to the thousands of people in the community?
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p>There aren’t discrete pieces of pie here that can be handed out to everyone. First of all, the residents transferred from the facilities will still exist once the facilities are closed. And their needs will still exist. The money that is now funding their care in centralized locations will follow them to their new locations.
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p>You also say the facility residents have been guaranteed equal or better care. Who is guaranteeing it? The same DMR that promised until December that it had no plans to close any facilities other than Fernald? The same DMR that promised in December that anyone who wanted would have a choice to go to another facility, and that now appears to be backing off that promise? If there really was a guarantee of equal or better care there would be no controversy over the closure of the facilities.
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p>Justice 4All is absolutely right. There should be an independent review of DMR’s cost/benefit analysis in closing these facilities. DMR has not shown in any kind of systematic or convincing way that there will be any savings if apples are compared to apples.
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p>Ruby, we are facing reality. We are facing the reality of this administration’s setting the stage for a land-grab by developers and a windfall for vendors. Under the guise of DMR’s and the Arc’s feel-good language, what will take place is a race to the bottom, as Justice 4All points out, as care and services are diminished for everyone.
There is nothing in my experience that shows that life is better in an institution. The people I serve who have moved out of Fernald and other institutions have thrived. We had a twenty year anniversary at one of my houses a few years ago. It was great to hear some of the parents talking to each other. They were remembering their anxiety about their adult children leaving the institutions and moving into the community. They were all pleased at the decisions they had made twenty years ago.
Just as there are some folk who belong in the community, there are others who require – and even thrive, in a residential setting. I know you keep using the word “institution” which conjurs up huge Stalinist buildings built with slabs of concrete.
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p>When I consider the residential placements where I have at times worked hard to get youths who were in need of care 7/24 and being in a setting with access to the outdoors and concentrated services, these places are not “institutions” with all that word conjurs up – the connotations are misleading.
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p>The residential placements to which I refer are specialized campuslike compounds where needs can be met without waiting for appointments, and staff splitting and burnout are handled much better due to the staffing ratios involved.
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p>There is a percentage of the disabled population, whether labeled “retarded” or “mentally ill” or given some other label that, whether for a short, mid, or long term needs a residential setting.
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p>I personally, as I said, consider the word “institution” deliberately misleading and inappropriate.
As part of my work over the years I have advocated for residential school placements for teens. Sometimes it is the best possible placement and I have worked with some individuals who have been succesful.
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p>I keep talking about institutions because I am talking about Fernald and places like it. Fernald is an institution.
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p>I don’t think that people need to live in places like Fernald. I think there are a few who are truly medically fragile, i.e. people who need ventilators to live, who need to live in medically based situations. Everybody else can live in the community with supports from the community.
Over the years I’ve been a direct care worker, labor activist and union representative for humans service workers and have observed the following:
– some people with disabilities need the “institutional” or “facility” setting, at least at times
– many people do well in the community – better than they would do in a facility
– if it wasn’t for advocates fighting aggressively there would be no community settings and no rights for the disabled
– in both settings some people languish and are worse off than they might be simply because they have the right to do what is not in their self interest
– since society wants to pay as little as possible for human services, and since facilities have high fixed costs and are hard to downsize, there is a fight between the two
sides over funds
– this fight often takes the form of both sides trying to prove that one method works to the exclusion of the other when really all they want is their share of the funding
– the facility supporters attack community service vendors for being greedy and corporate and the community supporters attack the state for being political and bureaucratic. Both are often right.
– costs are hard to compare for a number of reasons. One reason is that workers in community settings are paid siginificantly less than workers in facilities due to a lower rate of and shorter history of unionization
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p>We need a continuum which encourages disabled people to function at their highest level but recognizes that some will need “facility – based” care. Families should have input, people with disabilities should have rights and workers should be paid enough to make that type of work a career, instead of a second or third job.
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p>I wish we could all work together towards these goals.
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p>Ah…not so much. COFAR and other facility advocates do not attempt “to prove that one method works to the exlusion of the other.” On the contrary, facility advocates absolutely concur that most people with MR can thrive in community placements and should live there, as it is the most appropriate, least restrictive place for them.
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p>Unfortunately, there are vendor advocates that insist that all people, regardless of need or disability, should be forced into a community model which may be an inappropriate residential and medical placement. The reality is that 1-2% of people with MR are seriously or profoundly impaired, and require 24 hour nursing care. They need ICF/MR level care. These vendor advocates include the ARCs, groups that used to be true family advocates until they started selling services. In fact, the Arc was one of the plaintiffs that filed suit against the state in the 70’s to fix the terrible conditions that existed throughout the department. They are now multi-million dollar service providers for the state. Funny thing though – they’re not insisting that private residential facilities close. Only state ones. Ka-ching!
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p>Also, true costs should NOT be that hard to compare. After all, billion dollar conglomerates file financial reports each year, so clearly, basic accounting can get it done. Let’s ask why the DMR can’t get it done? Not enough pencils or is it because the numbers don’t add up to the outcome they desire?
I have a familiarity with Fernald-type institutions in Massachusetts that goes back forty years. While we all must be vigilant to the game of musical chairs that our human service delivery system has become, I have long observed the anti-closing rhetoric to be an unlikely mix of state worker union self preservation and fear of change in the consumer community. We can (and must) find a way to ensure that the needs of this population are met without the albatross of decaying and inadequate physical plants, outmoded treatment philosophies and suffocating administrative overhead.
No one is asking to maintain an “albatross of decaying and indadequate physical plants” or asking for “outmoded treatment philosophies and suffocating administrative overhead.”
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p>If you look at the Fiscal Year 2008 budget for Fernald, you’ll notice some interesting things. The physical plant is not a major cost. Salaries are. Of the total $40.9 million budget that year, salaries totaled $30 million, or 73 percent of the total budget, based on DMR numbers provided to The Fernald League. Fuel costs (electricity and oil) totaled $3.6 million, or 8.75 percent of the total budget. “Facility supplies” costs totaled about 1 percent of the budget, while maintenance and repair totaled about 2 percent.
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p>As for the suffocating administrative overhead, it was listed as $432,000, or 1.05 percent of the total budget.
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p>The salary cost is high because the level of care is high at Fernald. These costs represent the direct care workers, psychologists, physical and occupational therapists, nurses, doctors and others who work at Fernald. Let’s not mistake this. It’s the salary costs, and thus the levels of care, that DMR is seeking to cut in closing the facilities.
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p>There is no doubt that Fernald’s could be made to operate more efficiently: its footprint could be reduced; its physical plant be made more efficient; unused buildings could be torn down and energy-efficient residences could be built. We’ve been advocating that for years. But it is a myth that the facilities are somehow sucking state funds down a drain of decaying physical plants and overhead. Look at the budget for yourself.
yet another “stakeholder” purporting to know what’s best. With forty years of experience, John, I’d expect you to have a real response to the issues that have been raised, instead of this peashooter response of vendor-speak.
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p>So in the interest of rational analysis, John- please define “outmoded treatment modalities” at the facilities. Please also explain how centralized service delivery at the facilities are any different than those for people without MR?
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p>As we await your seasoned response on that, I’d also like to address your description of the “unlikely mix of state worker union self preservation and the fear of change in the consumer community.”
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p>It has been my experience that state workers in this field, whether in group homes or in larger facilities are better educated, better trained and as a result, better paid. Better pay helps insure consistent, quality care for people with mental retardation, who very often can’t advocate effectively for themselves. The state runs training programs from the day an entry-level MRW1 walks in the door. They are taught how to communicate effectively with our loved ones and to look for and understand signs of distress and illness in people who can’t speak. Their years of experience, because they do stay in the field, can’t be bought on the cheap, the way the vendors want. Additionally, the strong union empowers workers to speak up and stand up for their people, often against an administration who would prefer they stay silent. In fact, let’s ask that GBARC guardian who dared to defy GBARC when they wanted a fragile 90+ year old moved from Fernald.
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p>http://74.125.47.132/search?q=…
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p>
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p>Evidently – what Arc Mass wants – Arc Mass gets. How completely wrong is this…transferring these cases to another guardian, not in the best interests of the resident, but in the interests of the CORPORATE GUARDIAN! Someone must have heard the cash register closing.
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p>This is not to take away from people like Lyn, who have labored for years on behalf of people with MR, works for a vendor and deeply cares about her work. But my experience as a sibling-guardian, an advocate, and the two eyes in my head, tells me that in terms of quality care – well paid, well-trained union workers trump what’s happening in the vendor community. I’ve got a boatload of articles that I’ve kept through the years to support this understanding.
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p>As for the “fear of change” – well, we are. We’re afraid that the vendor community will treat our loved ones the way they treat the higher functioning residents who currently reside with them. I personally know of a young man who was placed in a vendor home when Dever closed. He had spastic quadripalegia and was a vocalizer. When he was found dead with a diaper in his mouth, it was suggested that he killed himself. Rational people understand that people with spastic quadripalegia don’t have the ability to put a diaper in their own mouths. That’s when I started making phone calls. I have that news article if you want it; it was in the Boston Globe.
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p>John, we love our loved ones. This is not an academic exercise for us; at the end of the day, we do not get to put our pencils in our desk and just go home. We live with the challenges of our loved ones every day of their lives, and we want them to live as long as the good Lord intends. It frightens families when so-called professionals try to force their “dignity of risk” ideology on a family member, when it is neither their risk nor their dignity at stake. There are no “do-overs,” and there’s no dignity in an early, Darwinian demise. We should be caring for the weakest and fragile among us, not subjecting them to the a perfect storm of incomplete service and medical models, a fragmented service delivery system, little to no oversight and workers with a turnover rate that prevents consistent, quality care.
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p>I only wish people like you, Ruby and Lyn could begin to actually care about the outcomes of our loved ones, instead of clinging to an ideology that forces families into what is essentially a “Hobson’s Choice.”
That is why I have been in the field for over 20 years. It sure has not been for the money or prestige.
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p>I understand that you think places like Fernald are necessary. I would say again that most people at Fernald could thrive in the comunity.
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p>One of the houses I run started out as an ICF/MR-A in the 80s. In the early 90s it was converted into a DMR group home. The population didn’t change. The agencies providing oversite changed. DPPC doesn’t provide oversite. The DMR Survey and Certification Team provides oversight.
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p>When I began working at this particular house, because it was an ICF/MR-A there was a nurse, a pychologist, a speech and language pathologist, a physical therapist, and an occupational therapist affiliated with the house. When the house converted from a ICF/MR-A to a Group home we lost all those services in the home. Instead the individuals began to access all those services in the comunity and they were fine.
located in the community, Lyn? In terms of the location of the home, where is PT, OT, the nurse, Psych, speech and language pathologies located? I have families who can’t find MR trained professionals. I need names, desperately. Can you email them to me? If you will, I will send you my email address.
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p>Additionally, are they receiving the same level of services – ie, X number amount of services per professional per person or has that changed? I’d want to see those ISPs before the conversion before I believed it. I’ve seen some post-conversion ISPs before…it was the difference between 100% juice and that crappy fruit punch at Market Basket.
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p>Also, would you support having Fernald convert to an HMO, with all the professionals located centrally, instead of having people hunt and peck to find these professionals, while allowing the fragile people who are still left to live the remainder of their lives at Fernald?
Thanks for your help.
How about a tour? It would be wonderful to see a true success story about an ICF that converted so wonderfully to a group home.
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p>And then I could return the favor. You could come to Fernald or Wrentham, and see the real deal.
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p>What do you say?
I’d be happy to see what I could arrange.
LynPB at rcn dot com
You offered nothing of substance to this discussion, and gloss over the very real challenges that profoundly impaired people face when deinstitutionalized. Straus’ peer reviewed paper in the AJMR lays out the mortality stats…yet you see a fear of change. Your response has the look and feel of an academic exercise, John – like you’ve got no skin in the game other than either a check or an ideology or both.
I don’t know much about Fernald but I am quite familiar with Monson Developmental Center. I worked there more than 10 years ago. The levels of mental retardation and physical disability are so wide ranging, that this topic cannot be discussed without addressing that issue. Some individuals are nearly normal, and those are the ones who need minimal medical care, they work and shop in the community, they are very suited to group homes or living with a family. Then there are the profoundly retarded and disabled individuals, who need 24 hour nursing care, cannot feed themselves or provide their own personal hygiene, they are bedridden with minimal awareness of their surroundings. These people will most likely be transferred to the facilities that will remain open. Then there are the individuals who are in between, they may be ambulatory and mentally retarded only to a moderate degree. They may be able to eat on their own, and provide some assistance with personal hygiene, but these activities must be monitored at all times to be sure that the individual is not putting themselves at risk. And as Justice4All states
this couldn’t be more true. The facilities are towns within themselves, with privacy, space, supervision and the ability to enjoy the outdoors with out worries about safety.
If these are people they are hoping to transfer to group homes, this is a grave mistake. I feel that they are better served in a large facility where there are safety nets in place to protect these people, while giving them freedom to live. These people should not be transferred to a group home. They should remain within the institutional setting, whether it be at MDC or one of the other large facilities.
With respect to Monson Developmental Center,I can understand how this large group of buildings, many of them already closed, can be a cash hog to the government. The buildings are very old, are expensive to heat and maintain. They need complete renovation or they need to be demolished. I am one the biggest complainers of wasteful government spending, so it really doesn’t make sense to keep all of these facilities open for just a few remaining individuals.
However, with that said, Monson Developmental Center is one of the biggest employers in our area, so as I watch it be scheduled for closure, I am also watching one more employment opportunity leave our area. This area is already in a state of steady decline. The closure of this facility will impact the small businesses that have depended upon MDC employees for a large portion of their business. Two hundred of the employees at MDC who live in Palmer/Monson will lose their jobs. It’s scary to think about where they may find another job in this area. Hopefully the group homes will be built in this area, but there is no guarantee. I guess time will tell what the complete impact will be in response to this decision, for the individuals who live there, the employees who have supported those individuals, and the towns that will be directly affected by this loss.
for caring about the people, liveandletlive. That’s what this is about.
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p>As for the buildings, we have long been advocating closing down the older, unused buildings, and selling off the excess land. All we’ve asked for is the “postage stamp” to let the current residents live out the rest of their lives.
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p>Evidently, that isn’t enough for a good progressive like our Governor. He wants it all.
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p>PS – good luck with the RN. đŸ™‚ Very cool.