I have worked with many families, staff, and individuals who have moved out of Fernald and places like that. Once out no one has ever asked to go back.
A lot of times hesitation to move is a result of not knowing aything else. There is also a tendancy of the people who currently serve the individual to think they are the only ones who can do it well.
The other reason might be fear based on the press (everytime I post, someone posts articles describing horror stories). We all know the only things that make it into the press are the scary stories. I have been in the field for 20 years, I have never had one of those scary stories happen.
I’m told that staff in the facilities is better than staff in the community. That cannot be true because they are often the same people,either moonlighting for the state or community providers.
People on BMG vilify community providers and DDS employees. I can tell you that I have met Elin Howe and she cares more about the people we serve than any other high level DDS official I have met. Maybe there are some human service provider CEOs who make good salaries but they are nothing like the salaries made by BP or Wall St executives. There is no one who does this work because the money is good. We do it because we care about the people we serve.
We would all be better off if we spent more energy working together to work for people with DD rather than fighting amongst ourselves.
justice4all says
Although I will never buy into the cookie cutter, one size fits all belief system, I applaud you for writing this.
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p>I think you also need to let people know that Elin Howe comes from the Columbia Group, which had made millions closing down state-run facilities. She has a vested interest in these outcomes.
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p>I understand that you have had very good outcomes where you are; it doesn’t diminish the pain and suffering of those who haven’t one bit. Some people do need a centralized service delivery model. We recognize that with the elderly, and I am at a loss as to why it’s an issue for people with DD.
amberpaw says
I have been to community residences and I have been to centralized residences, including Fernald albeit some time ago. I value both and have worked on behalf of residents of both, albeit as a provider of legal services to residents of both kinds of facilities either by court appointment or at the choice of their families. I have also visited group homes of various varieties, as well as other facilities serving various populations. There is room and need in my opinion for more than one modality of services.
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p>I have not “villified” you, Ellin Howe, or anyone else.
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p>I have disagreed what appears to be your position, namely that 100% of all persons with DDS, mental illness, or any other form of challenge or difference are always, no matter what, best served in the Community. I have disagreed that every community placement I have visited or worked with has the level of services and staffing that I believed my client to need.
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p>”One size, one treatment modality fits all no matter what” as a statement constitutes poor science and does not reflect my data set either as to human needs or the statutory and case law requirements of this state and nation.
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p>In fact, the track record of this state is especially poor as to adolescents, whether in foster care or requiring mental health treatment.
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p>Please do not villify the families who know their family member and do not agree with you as to having their family member moved to a facility of yours, or like the one where you work. After all, they just might be right and our state’s track record without the supervision of a judge is, frankly, nothing to brag about.
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p>What you may wish to do is flesh your own post out with links to some of the providers you consider are very competent, and the sorts of “community” facilities they run, with success stories that you are authorized to share. We don’t get many of those success stories from the press or at this site; pony up, please. As some say, “the devil is in the details” – lets have the case you are making fleshed out.
lynpb says
Justice, please explain “who needs a centralized delivery model”. If individuals need nursing home level of care I think they should live in nursing homes while they need that level of care. I just don’t see why having DD should determine where you live.
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p>Deb, I have never vilified anyone. You keep comparing your work with adolescents, it isn’t the same.
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p>You mis-state my position when you say I advocate one size fits all. As I said above, “In the adult world, DD and non DD, most adults live in houses or apartments in neighborhoods. When people have acute mental health issues sometimes they spend time in the hospital. Same for acute medical issues. When people have rehab needs they stay in rehab. I can’t think of any reason why people with DD should be segregated just because of their DD.”
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p>Over the years I have posted stories about people who have moved into our homes and out of institutions. I am hesitant to do so now because of privacy issues. There are so few people left that if I described any of them their they might be identifible
justice4all says
Who needs centralized service delivery? People with multiple disabilities and/or medical conditions. Dr. David Straus actually defined those people at greater risk in community settings after being deinstitutionalized as those who are non-ambulatory, non or low verbal, and incontinent. Happy to send you the study.
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p>So here’s the thing, Lyn. We have such models for the elderly – they’re called assisted living facilities.
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p>http://www.heritageassistedliv…
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p>There are vendor “institutions” all over this country, and some right here in Massachusetts. (Perkins School, etc) They provide residential, medical care and education on their grounds. Not a word about closing them down by the Elin Howe’s and the vendor zealots of the world. I wonder why? Are those not “segregated” communities? Or are those okay because they’re vendor owned and operated.
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p>It’s not segregation (which is a judgmental, biased word if ever I heard one)- it’s actually cost efficient and common sense when a centralized service delivery model is managed right. There are economies of scale when dealing with certain populations that can be realized while delivering appropriate levels of care. In fact, some states use their developmental disability centers at HMOs. Unfortunately, the haste to privatize in this state and get those contracts in the hands of vendors is dismantling our service delivery system in both state run and vendor run operations. Budget cuts are decimating services and at the same time, eviscerating oversight by massive layoffs of the service coordinators. Even the ARC and other organizations are recognizing this.
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p>And here’s the other thing. Profoundly disabled people shouldn’t be shoehorned into settings that don’t support them. Ideology should not drive decision making for the 1-3% of the DD population that needs this level of support to survive. You’ve suggested that nursing home care is the only alternative to group home/at home living, and I think that’s unfortunate. There were people at Fernald who were much more “free” – able to roam the grounds, use the pool, go to the rec center…than some urban group homes I’ve seen.
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p>I don’t see anything wrong with supporting both models of care. If it works for the individual, we should support it. But what we have going on right now, the wholesale eviction of people who have lived entire lives in facilities, only to be forced to “fit” in a model that isn’t appropriate for them is a crying shame.
lynpb says
The people you describe ” as those who are non-ambulatory, non or low verbal, and incontinent” have been happy living in our neighborhoods. If you asked any of their guardians or family members if they should have stayed at Wrenthem, Hogan, Dever or Fernald rather than moving out in 1985 not a one would wish they had stayed. When we had a 20th anniversary party the parents all talked about how scared they were in 1985. They were hesitant to let their family members leave the state schools as middle ages adults. It was heartening to hear them talk about how they were glad they made the choices they did.
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p>Feel free to send me studies. I would rather rely on my own experiences and as one of my mentors says, “on what I see with my own eyes.”
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p>I do not know any of these vendor zealots you refer to. I know that as I develop new homes I am happy to take residents from turning 22 programs, nursing homes, facilities, any where that there are people who need homes. We try to match people’s needs and interests as best as we can. No one in my agency makes an extra dime when we provide housing to someone from a facility vs another setting.
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p>As I have said before, I am sorry that people who have lived together for years have not in many cases been able to continue living together. If it had been left to me I would have tried to make that possible.
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p>You describe part of the problem as haste by the Patrick administration. I don’t think the problem is haste. There has been talk about closing Fernald since the Weld/Baker days. What I see is more a failure to make some hard, possibly unpopular, to families and unions, choices until now.
amberpaw says
Are you only talking about adult DD without mental health issues? Are you saying any level of DD is better off in a community group home then in a congregate setting/I am trying to understand the following:
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p>1. What population are you talking about serving.
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p>2. What percentage or constellation of need within that population can your provider organization not serve, if any?
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p>3. What variation in programming, sites, and supports (with specificity) are actually available with open beds?
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p>I need to know 1-3 above to not feel that I am getting the “we are better for everyone” kind of argument that I for one hear as “one size fits all”.
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p>Thanks.
lynpb says
My service provides supports to over 60 people.
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p>1) We serve people with profound MR who cannot speak or walk and need total care assistance. If you met these people you would not be able to tell them apart from the people who live at Fernald.
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p>We serve people with moderate MR, some of whom have minimal or non-functional speech. Some of these folks have major behavioral problems, i.e self-injury (SIB) to the extent of harming themselves if there is not proper programming.
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p>We serve people with mild MR who have major mental illnesses. In addition to helping them become increasingly independent we also help them with medication management.
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p>We serve people with mild MR who have multiple physical disabilities.
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p>2) I have yet to meet an individual we can’t serve. That being said, when people need to be in the medical hospital we support them there, when people need to be in the psychiatric hospitals we support them to be there. In the last year we have even been able to support a number of people to die at home with the support of hospice.
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p>3) Our homes are varied based on the needs of the individuals served. The physical plants vary, some are more accessible than others. The staffing patterns are different based on the needs of the individuals. Some of the houses have nursing staff on call, some on-site. The individuals in one house share a cat.
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p>The human service budget stinks. We have had to make cuts over the years. There are not lots of open beds waiting. However we were able to open two new homes this summer. The people for those houses came from residential schools, crisis centers, their family homes, state institutions, nursing homes, and assisted living facilities.
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p>There really is nothing “cookie cutter” about what we do.
amberpaw says
First, I presume that I could not view such a facility due to privacy concerns, but I am wondering:
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p>1. Do such folk get to go swimming? How? How frequently? I mean in these “community” homes.
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p>2. How many per home, and how many staff are involved per resident?
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p>3. What are the cuts you are talking about, when did they occur, and what was cut?
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p>4. What is the average wait time for such a bed.
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p>5. How are these beds funded or is there a COST share?
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p>6. Is the yearly/daily charge the same for all residents in the same home?
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p>Thanks!
lynpb says
I’ll answer again but in short fashion.
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p>1. Do such folk get to go swimming? How? How frequently? I mean in these “community” homes.
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p>I don’t think anyone knows how to swim in that group. Some used to play at the Greene pool. That will be missed. They also wade at local beaches and ponds.
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p>2. How many per home, and how many staff are involved per resident?
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p>4-5 per home, 2 staff to 4-5 individuals
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p>3. What are the cuts you are talking about, when did they occur, and what was cut?
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p>Could do a whole post on this, maybe another night. Let me know if others are interested.
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p>4. What is the average wait time for such a bed.
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p>Doesn’t work that way. There are as many ways to move into a house as there are kinds of people. Again let me know if others are interested in a more complete explaination.
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p>5. How are these beds funded or is there a COST share?
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p>The beds are funded through contracts with DDS.
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p>6. Is the yearly/daily charge the same for all residents in the same home?
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p>DDS regulations require that all residents pay 75% of their entitlements, i.e. SS, SSI, SDI so the amounts vary based on the amounts of entitlements
justice4all says
It’s not about whether these residents can swim or not…the therapeutic pool at Greene is about freeing the residents from their disabilities at least temporarily in a very warm pool. http://www.boston.com/news/loc…
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p>The beds are cost shared with both state and federal funds, depending on the nature of the disabilities. Residents who qualify for the “Home and Community-based waiver” may have a 50/50 split fed/state.
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p>The costs associated with beds and services is a moving target. Elin Howe was supposed to produce a cost study that supported her decisions…but it was an watermelon to cherry comparison instead of the apples to apples comparison she was supposed to provide. I’ve got a cost study that puts truth to the moving target. đŸ™‚
amberpaw says
The relevant axiom is:
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p>Both areas, please!
justice4all says
provided at Fernald – all of them, provided in your group home? PT, OT, Adapt Tech, Pool, Clinical/medical, Psych, etc. The therapeutic pool? Dental services? If they’re not provided, how long is the wait for such services? How much real interaction do they have with the neighborhood? Anyone inviting them to backyard barbecues? Because that’s not what’s happening with a group home that I am acquainted with.
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p>I think it’s wonderful that some of the people who have chosen your group homes are happy with their decision. We also know people who weren’t and have brought their loved one back. Community group homes are not a panacea for everyone.
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p>You didn’t address the point I made about the vendor operated “institutions.” Why are those okay, but state ops aren’t?
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p>You do know vendor zealots. Elin Howe is one of them.
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p>
ssurette says
I’m glad you decided to add your unique experiences and perspective here. Its needed.
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p>I have no doubt whatsoever that you are dedicated to the people you serve. I also have no doubt that many many people who now reside in community homes are doing great. As I said before, I think that is fantastic.
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p>I have just a couple of points to add:
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p>No one has ever asked to go back to a facility because they are not allowed to go back. Once you sign a community based waiver, you’re out….period. As I see it, that is part of the problem. If you move your family member into the community and for whatever reason it is unsuccessful–what do you do then? You can’t go back to what worked in the past and if the Governor has his way there won’t be anyplace to go back to. Anyway you look at it, moving a person who has lived well somewhere for 50 years is too big a risk to take.
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p>I have a completely contrary view of who is being villified here. I have to say its the guardians of facility residents–the minority–not the majority. Lets be real honest here. The administration et al have waged a successful campaign of convincing the community that facilities like Fernald are the proverbial pariah of the budget. Everyone will have everything if they close. I don’t quite understand that either since the community gets the lions share of the budget. Facilities are at about 12%. They managed to split the DD community so they are fighting amongst themselves rather than fighting for everyone with DD. I find this particularly disgusting that we would turn on each other. I have no problem with the community–why does the community have a problem with the facility.
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p>I keep waiting to hear some community outrage. You said it yourself. People you serve used to use the Greene pool….now they can’t. Does that not represent a cut in community services. The fact that hundred of people use the pool and hundreds don’t live there doesn’t it make Fernald part of the community based care system. The same with the Dental clinic with one exception, thousand use the clinic. Where is the community outrage about those losses? Its like a slight of hand card trick…keep you focused on the right hand that is throwing the people out so you don’t notice that the left hand is cutting what you used to have to.
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p>I went to committee hearings at the state house and watched a parade of young mothers (god bless them) with their children in wheel chairs, being fed by feeding tubes, and sat there while they told committee members that facility residents were robbing their children of services and that they would lose their services if Fernald remained open. I had all I could do to control myself from jumping up and shouting that you wouldn’t have any services at all if not for the battle fought by the parents of these elderly facility residents before you were born. Seems like a pretty thorough case of brainwashing. Again, who is being villifyed here?
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p>As to human services salaries in the private sector, I agree that the great majority are underpaid to do a difficult job and I don’t deny anyone a living wage, but there are CEOs who are making $500+K per year on the taxpayers, while crying poor mouth and making cuts–give me a break.
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p>Elin how is a wolf in sheeps clothing. She was hired specifically for her reputation for closing facilities. If she cared so deeply for these people she would be working for ALL of them not just the ones who have the ability to live in the community. There is a lot of room for compromise where facilities are concerned. There are numerous solutions that are good for the taxpayers and the people. Just closing them down and throwing people out is not a solution. There are any number of ways these facilities can be pared down, made more efficient and economical to operate, keep things like the Greene pool that are tremendous assets, and let the elderly people who call it home remain their. When she makes an attempt at finding a solution, maybe then I will change my view.
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p>
dave-from-hvad says
serves DDS clients with all different levels of DD. I have no reason to question the care your program provides. But you haven’t made the case in your post for closing Fernald or the other ICFs.
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p>In fact, you haven’t refuted any of the major points about ICFs that the Fernald League and other facility advocates been making all along. Among those points are that:
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p>1. The administration is closing ICFs without first undertaking adequate planning for all clients of the DDS system. The administration’s Community Services Expansion and Facilities Restructing Plan only projects developing enough new beds for residents of the ICFs slated for closure. There is no planning that we have seen for new beds for the thousands of people waiting for them in the community.
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p>2. There are certainly good programs in the community, and yours may be one of them. But, by and large, the community system is underfunded and direct-care workers in the community system receive less training and fewer benefits than those in the ICFs. Staff turnover in the community system is consequently higher on average than in the state ICFs.
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p>3. The community system, with its dispersed network of thousands of group homes, receives less state oversight than the ICFs.
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p>4. The ICFs, by statute, provide a higher level of care than does the community system, which operates under a waiver of the requirements of Title XIX of the Social Security Act.
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p>5. The administration has so far not followed through on its promise to put money allegedly saved in phasing down and closing Fernald into the community system.
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p>As others have stated in this thread, there are certain DDS clients with such profound levels of DD and medical issues that ICF-level care remains most appropriate for them. That’s not vilifying the community system, but is simply the educated view of most guardians of ICF residents.
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p>There is no reason that an efficiently run ICF system cannot exist alongside a community-based system. At least 40 states have ICFs. This administration is making a grave mistake in decimating this critical component of the DD care spectrum.