UPDATE: The House gets it right on DMR facilities!

The truth is emerging (5.50 / 4)

I applaud Mr. Bacotti's courage for "breaking ranks" and speaking out against the closure policy. It is courageous to let the truth be known that there are no savings associates with these closures and that these closure will result in the loss of critical services not available elsewhere.

Having been the Director of Glavin he has something most of us don't.  The unique knowledge of what it takes to run these development centers.  He know first hand the operations,  costs and what it takes to administer the many specialty services they provide and who they are provided to. Who is in better position to judge...certainly not the Governor.

It is courageous of him to let the FACTS be known to counter the usual BS we hear from the administration, DMR, or the vendor community.

A good question....why ARE they bent on closing these vital centers? I wish someone in the administration would show some courage and tell us the REAL reason (greed and patronage) and stop insulting our intelligence with their idiotic rationale.

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by: ssurette @ Tue Apr 28, 2009 at 20:45:07 PM CDT

Lies, Damned Lies, and more.... (4.50 / 2)

nonsense from the Patrick Administration.  No cost savings!  No wonder this administration didn't want a feasibility study.  The dirty little secret is out now, but the vendors and vendor advocates have their hired guns, and a willing administration to propagate the lies. The vendors also want no oversight.  (See Dave's previous posting on that topic)  

So the real question is whether the Legislature will allow this travesty to go forward.  We already know that Patrick's in the tank...

"The world was made for people who aren't cursed with self-awareness." ~Annie Savoy, Bull Durham

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by: Justice4All @ Wed Apr 29, 2009 at 07:38:18 AM CDT

Dave - Thx for the posts, and keep us informed. (0.00 / 0)

Yr. Obedient Servant, Peter Porcupine, Republican

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by: Peter Porcupine @ Wed Apr 29, 2009 at 21:08:17 PM CDT

Did you know that pretty much every legislator, AND their staff reads BMG? (6.00 / 2)

I have lost count of the number of legislators and elected officials who come up to me at community events and tell me how much they liked a post of mine, and why they agree with it - going into enough detail that I truly believe THEY have READ what I wrote.

And they read any post that may impact their area of expertise, or issues that have legs...and some of them have a staffer detailed to read all BMG posts and print out "the posts you really need to read and follow".

So, Dave keep us posted, and you will keep THEM posted as well.

You have also always been open as to your goals, while practicing good, credible, fact-based citizen journalism.

Way to go!  I am proud to see what you have accomplished in the open, by honest, hard work.

Deborah Sirotkin Butler
AmberPaw dot @aol.com

"Failure to plan is planning to fail."
Proverb

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by: AmberPaw @ Thu Apr 30, 2009 at 09:47:57 AM CDT

[ Parent ]

Amber, thanks to you and Peter for your support and encouragement (6.00 / 3)

This House vote is a rare--and we fully hope not the last--victory in what has been a pretty disappointing year for those of us who have advocated for full choice in care for people with mental retardation in Massachusetts.  I'll do my best to keep you updated on the continuing battle.

I'm glad to hear that legislators read BMG.  I believe the administration reads it as well.  We've come to BMG because it has become the only way to get the message out to a wide and politically savvy audience about what is going on in this key area of government. The MSM has long since ceased being an effective avenue for this. The Globe has pretty much stopped covering this subject.  The Herald is against facility care, and it's hit or miss for other papers around the state.

AmberPaw,you have become a highly respected, independent voice in the Massachusetts political blogosphere, and we're glad to have you on our side of this issue.  The same is true of Peter Porcupine.

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by: Dave from Hvad @ Thu Apr 30, 2009 at 10:22:05 AM CDT

[ Parent ]

Wrong! (4.00 / 3)

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by: Michael Forbes Wilcox @ Thu Apr 30, 2009 at 11:53:38 AM CDT

Michael - sometimes even friends have to agree to disagree (6.00 / 2)

And on this one, your data set and mine may just differ.

Again, "one size fits all" is not a model that fits the diversity of needs, natures, and services required by diverse human beings.  

Some services and supports not only work better in a setting where those with certain critical but complex needs are concentrated - and are only made possible in such a setting.  The folk that fit this model are a small number, compared to all of the population, and to the disabled/challenged/"DMR" population, but they do exist.

And I can tell you from direct and personal experience in the field, in legal work, that over sight is minimal to non existent, that this leads to problems [including those identified in Rosie D. v. Romney] and that, while I am not directly involved, I am aware of at least two more well-founded class action suits due to the poor treatment received by certain vulnerable folk.

I do not benefit financially from this result.  The cases I handle to not involve either the ARC or DMR.  I am, however, intellectually curious, open minded, and have had guardian ad litem appointments involving various facilities - and become convinced that sometimes for short term crisis needs, and sometimes due to major medical needs and extreme fagility, a certain number of well-staffed, well funded residential facilities are a needed component for psychiatric treatment, residence/treatment modalities, and crisis management.

As I hope you know, I am not employed by any organization nor do I view using the right treatment or a good residential facility as an issue of stigma, or failure.  

Deborah Sirotkin Butler
AmberPaw dot @aol.com

"Failure to plan is planning to fail."
Proverb

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by: AmberPaw @ Thu Apr 30, 2009 at 12:29:51 PM CDT

[ Parent ]

Just to clarify one point (6.00 / 4)

I completely agree with what AmberPaw says here.  But lest anyone misunderstand, the whole argument over facilities versus community misses the boat in a key sense.  The real argument is over the level of care in those facilities.  The Patrick administration wants to eliminate ICF-level care, which is currently only available in the facilities.  ICF-level care is defined in Title XIX of the Social Security Act.  Community-based care is provided in Massachusetts under a waiver of those Title XIX requirements.  The administration wants everything to fall under the waiver, and yet contends, inexplicably, that the level of care will remain equal or better under the waiver.  That simply won't happen.

We want to preserve ICF-level care and we would like to preserve it at its current locations, because those are the long-time homes of those receiving that care.  We are not seeking to preserve the current buildings at Fernald or at the other facilities. Since new buildings will have to be built anyway under the Patrick administration plan, our argument is that they should be built at the current facility sites. The footprint of each site could be scaled back and advantages of the central locations and economies of scale could still be maintained.

I completely agree with AmberPaw that well-funded residential facilities are needed for those with the most severe and profound forms of mental retardation.  But it's not so much the "facilities" that are important here, it's the level of care within them that is important.

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by: Dave from Hvad @ Thu Apr 30, 2009 at 13:18:07 PM CDT

[ Parent ]

Michael, ditto (3.00 / 1)

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by: LynPB @ Thu Apr 30, 2009 at 13:18:36 PM CDT

[ Parent ]

It's the right thing to do. (6.00 / 2)

It's nice to see that The House is on the right track with this issue that affects so many of our intellectually, developmentally, mentally, and medically disabled citizens of the Commonwealth, who but for the efforts of
The Fernald League, COFAR, and others independent of DMR and its long arms, Arc Mass and ADDP, would have no political voice in Massachusetts.

A comprehensive cost analysis is exactly what is needed here, but the facilities should not be the only subjects to be studied. It's time to take a long look at the increasingly privatized system and its group homes, only 20% of which are surveyed in any given year,

www.bluemassgroup.com/diary/15468/surprise-dmr-vendors-want-even-less-group-home-monitoring-an-update

whose employees will no longer be subject to background checks through the DPPC, which agency is frighteningly short of funds needed to investigate allegations of abuse and neglect of the disabled.  

http://www.myfoxboston.com/dpp...

Let's also remove the cloak of secrecy of the administration's December 12th ice-storm dictate to evict from their homes those who are, for the most part, unable to speak for themselves.

I predict that when this so-called closure "plan" is examined in the light of day, that this boat will spring leaks that will eventually lead to its sinking.

And then Governor Patrick will have to do the ethical thing, which is the only thing he can do, and that is to abandon ship!

Shame be to those whose actions are shameful.

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by: truth.about.dmr @ Thu Apr 30, 2009 at 12:00:18 PM CDT

Michael & Lynn - I truly don't understand the "Us v. Them" flavor in your posts (6.00 / 2)

It is not either or - it is both, and...at least in my view.  The sorry history is of "me first", "not in my town" and "as long as I got mine, who cares", "my way of the highway" thinking has always mystified me personally.  

Kind of the same problem in your reactions to Dave from Hvad's post - it is not "us vs. them" - or should not be - between residential level care [title XIX] for those who need it and community care for those who need it - but proper support for both for the populations that need each of these modalities.

I do not understand at all why some supporters/caretakers of the cognitively challenged, mentally frail, or psychiatrically involved seem to take the reality that there is a percentage of folks who need "Title XIX" residential level care as a kind of personal affront or stigma.  This is a small percentage; most do better in properly staffed, fully funded, appropriate community care at various levels - community care is also not "one size fits all" - I would hope you agree!

Just as some special education students, a very small percentage, need 1:1 instruction at times, while some flourish at 1:5 staffing ...  there is no stigma in meeting needs properly and without condescension or dogmatism.


Deborah Sirotkin Butler
AmberPaw dot @aol.com

"Failure to plan is planning to fail."
Proverb

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by: AmberPaw @ Thu Apr 30, 2009 at 13:44:07 PM CDT

[ Parent ]

Deb I belive that most if not almost all of the people in the institutions would do better in the community. (0.00 / 0)

I would love to talk with you about it further. Maybe we can talk at the convention since there will be a lot of down time and since our delegations are close to one another.

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by: LynPB @ Thu Apr 30, 2009 at 16:05:57 PM CDT

[ Parent ]

Lynn - close to an admition here (0.00 / 0)

"most if not almost all"...

It may be 2% or 3% - but why deprive those folks of the level of care they need?  
Why deny that that level of need exists?  We both know, in fact, the "ICF" of "Title XIX" level of need does exist - for some constantly, for others episodically - and that poorly done community care, or "one size fits all" care anywhere is dangerous.

Deborah Sirotkin Butler
AmberPaw dot @aol.com

"Failure to plan is planning to fail."
Proverb

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by: AmberPaw @ Thu Apr 30, 2009 at 19:03:49 PM CDT

[ Parent ]

Deb, have you been to Fernald? (0.00 / 0)

It is nothing like the residential schools you are used to as part of your work with kids. Did you ever spend time at Gabeler?

There are a some folks at Fernald that need constant medical care. They use ventilators, they are kept alive by machines. They will need to live someplace that has 24 hour nursing.

There are other people with seizure disorders, picca, behavioral issues, mobility impairements, self-injurious behavior (SIB), aggressive behaviors. There are people who are non-verbal, people who use wheelchairs, people who are blind, deaf, and some who are deaf and blind.

All of these folks could thrive in comunity residences. I know this because I work with people just like them.

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by: LynPB @ Thu Apr 30, 2009 at 20:15:12 PM CDT

[ Parent ]

LPB - See if you can locate this film (5.00 / 1)

It's called 'Front Wards, Back Wards'.  I saw it at a film festival, and it's run on WGBH.  I cannot find a site for the film, but if you can see it, you'll understand the profound level of care and need that elderly residents have, and why the closure is like suicide - a permanent soltion to a temporary problem.

Yr. Obedient Servant, Peter Porcupine, Republican

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by: Peter Porcupine @ Thu Apr 30, 2009 at 19:33:50 PM CDT

[ Parent ]

I've seen the film (0.00 / 0)

More importantly I have been in at least three of the State Schools. I serve people who used to live there. Out of the 45 people I serve, about a third of them would be classified as severe or profoundly MR. They have thrived in community settings.

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by: LynPB @ Thu Apr 30, 2009 at 19:58:29 PM CDT

[ Parent ]

Amber - I have a great study (0.00 / 0)

on the bologna that the vendors and their employees are peddling.  It was published in the AJMR, and it debunks a lot of the sad, old shopworn rhetoric used to close facilities and take away services from the people who need it the most.  May I email it to you?

"The world was made for people who aren't cursed with self-awareness." ~Annie Savoy, Bull Durham

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by: Justice4All @ Fri May 01, 2009 at 06:41:45 AM CDT

[ Parent ]

Thank you to the House (6.00 / 3)

Finally, some of us will be able to sleep tonight. The amendment for the feasibility study is a great win for those who really know the truth rather than those who speak the "Veiled Truth". This is a small win in the much larger issue Of; "EQUAL OR BETTER".
Thanks to all of the legislators who supported the admendment and finally realized that the Patrick administration is tring to force feed their oponions and agenda rather than be educated on the "Real Truth".
In 2003 COFAR proved to the Romney administration that there was no cost savings to the tax payers of Massachusetts by closing the ICF/MR Developmental Centers. In 5 years how could that have changed to the tune of $40,000,000. It has not changed. The only way the cost savings argument works is if DDS formerly DMR decides to "Water Down" an individuals service plan. The result of that would be the loss of necessary services and potentially Fatal to the individuals living in the 6 Developmental Centers.
In fact, the current DDS Commissioner Elin Howe has revised her original statement of a savings of 40 million to "the cost saving if any is a moving target".
Governor Patrick I ask this of you, please give up the persona of having to be the only "educated" person in the room and maybe you will learn the truth.
Thanks again to the Legislators for the votes.

David Hart
COFAR President  

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by: David Hart @ Thu Apr 30, 2009 at 15:29:01 PM CDT

It may be that both sides need to "walk in one another's shoes" a bit (0.00 / 0)

I have now been invited by each to "come and see" - I will be out of town 5/3-5/10 and it is a bit hard for a self-employed person to take the time away from their livelihood to DO what you are asking of me.

However - e-mail me contact information, and when I get back I will contact you.

Would it be possible, if I can get my college student son to come along, to make some digital footage so I can share whatever portion of what I am seeing is not privileged or confidential?

Yes, Lynn, I will come and "see" different levels of care at the group homes you are employed to manage [and hope that I am shown an honest sample, and anyway, wiley enough not to be taken in by a 'Potemkin Village' - and I offer to do the same for COFAR, okay, Dave?  And then I will share a first person report, after also making some phone calls.  Not sure how long this will take me to pull together, as I am also appearing in courthouses, writing legal pleadings and briefs, and keeping a household running, you know?  

But I will try.  The day I close my mind and stop learning, or think I know it all about anything, is the day I close up shop.  You both know how to find me.

Deborah Sirotkin Butler
AmberPaw dot @aol.com

"Failure to plan is planning to fail."
Proverb

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by: AmberPaw @ Thu Apr 30, 2009 at 20:30:06 PM CDT

Amber, I admire your sense of civic duty (6.00 / 1)

We encourage everyone to visit Fernald and the other facilities.  And I would encourage you to visit community residences as well.  We are not against community based care.  Our concerns with community care are:

1. The level of oversight of community-based group homes is inadequate.

2. The community system does not provide ICF-level care that is currently available in the facilities.  

3. Staffing is lower in the community system and turnover is higher than in the facilities.

As a result, we do not believe community-based care is appropriate for many, if not most, of the people who currently live in the facilities.  For persons with mild or moderate mental retardation, community-based care is perfectly appropriate (although the lack of oversight is still a problem).  

For people with severe and profound mental retardation, who, as LynnPB says, need constant medical care, the facilities remain necessary.  LynnPB simply asserts that "all these folks could thrive in community residences." That is where we disagree.  As Alfred Bacotti, the former director of the Glavin Center, pointed out:

Glavin is a backup to the community for a small group of individuals with developmental disabilities and mental health problems who are experencing extreme difficulty in living in a community setting.(my emphasis)

In other words, those people have not thrived in the community and they need Glavin.  I think Dr. Bacotti is in a position to know.  

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by: Dave from Hvad @ Fri May 01, 2009 at 07:59:41 AM CDT

[ Parent ]

As I said, you both know how to contact me! (0.00 / 0)

If you google "Deborah Sirotkin Butler" you get my office a bazillion times, for example.  So fax or mail me realtime contact info and later this month [say after I file the next brief I have due on the 17th] I will get back to you both.

Deborah Sirotkin Butler
AmberPaw dot @aol.com

"Failure to plan is planning to fail."
Proverb

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by: AmberPaw @ Fri May 01, 2009 at 20:42:58 PM CDT

[ Parent ]

Thank you house (0.00 / 0)

I know I will sleep a little better.  Thanks to the Reps for their support and hard work.  Hopefully we can keep the momentum going.

I too and mystified by the "us" vs "them" attitude.  I don't understand why ADDP/ARC/vendors, etc. are so offended by having the choice of ICF level care available for those that require it. From all accounts, they already have their hands full.

Just a thought.  It seems we have a "divide and conquer" strategy going on.  Pitting the various factions against each other, eliminating one united front and a much larger adversary and in the process diverting the focus from the true objective.  The factions "duke it out among themselves" while the instigater waits and watches and achieves their objective unscathed.  Again, just a thought.

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by: ssurette @ Thu Apr 30, 2009 at 21:03:57 PM CDT

It's a matter of civil rights (4.00 / 1)

I'm no expert on this subject, and I have no personal ax to grind, but I am concerned about the treatment of the people at Fernald and the other similar institutions.

I have participated in a workshop at the Shriver Center (on the grounds of Fernald), being one of two panelists for a group of students at UMass Medical. My fellow panelist was a woman in a wheelchair, and I was the poster boy for "invisible" disabilities. Point is, I got to see some of the hulking institution firsthand.

I have also seen the documentary that PP mentions, and thought it a bit biased, but I still came to the conclusion that the place serves no good purpose.

My objections are basically twofold:

(1) It's an issue of equal rights. In "Brown" it was determined that separate is not equal, so why is it that we continue to isolate people simply because it is a challenge to care for them? They have a basic human right to be part of our community, and to be treated with dignity, not shut away in an asylum.

(2) If you've seen the movie and/or visited the institution(s), it's clear that the infrastructure of these aging facilities is crumbling and hugely inefficient (Fernald is not the only one I've visited, btw). Common sense tells me it would be cheaper to care for the people who live there in a smaller facility.

But the primary issue is #1, and not a cost analysis. We should do the right thing by these people, not cast them off in an isolated, outmoded facility.  

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by: Michael Forbes Wilcox @ Fri May 01, 2009 at 07:48:16 AM CDT

Michael, you're confusing a number of issues here: (6.00 / 2)

1. This is not a case of segregation.  The residents at Fernald are not segregated any more than the residents of a group home are segregated.  Yes, Fernald residents live on a campus; but so do many college students. Should colleges all be shut down so that the students are not "segregated" anymore and can study in the "community?"  

In fact, Fernald and the other facilities are highly integrated with the surrounding communities.  They share their medical, clinical, and recreational facilities with community-based clients.  Facility residents are taken to community events all the time.  Services at Fernald are not segregated, they are simply centralized, which allows for achievement of economies of scale.

2. The facilities are not outmoded.  As U.S. District Court Judge Tauro said in 1993, the care provided at the facilities had improved to the point where it was second to none anywhere in the world.  Things have changed greatly since the 1970s.

3. As I've tried to say many times in this thread and elsewhere, we are in favor of tearing down old and cost-inefficient buildings at Fernald and housing residents in smaller, cost-effective settings.  Those new buildings will have to be built anyway if Fernald is closed.  Why not build them in the same, centralized locations in which their residents currently live?

I agree we should do what is right by these people.  In the name of civil rights, we should not be removing them from their long-time homes, against the will of their own families and guardians.

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by: Dave from Hvad @ Fri May 01, 2009 at 08:17:51 AM CDT

[ Parent ]

Civil rights (6.00 / 1)

Michael--I am sorry your dealings with development centers left you with the conclusion they served no purpose. Your really needed to look beyond the old buildings.  Fernald serves a great purpose.  It provides comprehensive services in a centralized location and is a long time home to its residents. These individuals are not segregated. Fernald is and has been totally integrated with its host community for decades.  The residents make frequent trips into the community.  In fact, my brother who is a resident, gets out more than I do.  Likewise, the community frequently uses Fernald facilities.  I can't recall, except for in extreme weather, a day that I have gone to Fernald that some town team wasn't using one of Fernald's recreation fields.  Many of the town residents attend sunday services in the chapel and participate in many of the special events held there.  

There is a unique level of expertise in the services that Fernald provides that have taken years to develop and are not available in the community.  Residents of group homes use Fernald facilities.  Should the mentally retarded be denied the level of care they require because of a false perception of isolation?  What you perceive as isolation is a buffer zone of safety for my brother.

Its true, the "hulk of the institution" and the negative image it protrays, are still there.  They are old, unused,  and long overdue for demolition.  On that I agree. But that is only the surface. However to conclude that Fernald serves no purpose because of some old unsed buildings is incorrect.

As Dave has more the adequately stated, these buildings should be destroyed and SINCE NEW BUILDING HAVE TO BE BUILT, why can't they be built at Fernald?  This would serve many purposes.  Good for the lifelong residents who have great difficulty in any kind of change in the lives.  Cost efficient since this land is already owned.  The level of expertise would remain intact.  Good for the local economy both in continued employment and resulting construction contracts, etc.  A win win situation.

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by: ssurette @ Sat May 02, 2009 at 09:54:43 AM CDT