August 26, 2010
Michael Widmer
President
Massachusetts Taxpayers Foundation
333 Washington Street, Suite 853
Boston, MA 02108
Paul Grogan
President and CEO
Boston Foundation
75 Arlington Street, 10th Floor
Boston, MA 02116
Dear Messrs. Widmer and Grogan:
We are writing on behalf of The Fernald League, Inc. in response to the July 2010 report, jointly published by your organizations and titled: “The Utility of Trouble: Maximizing the Value of Our Human Service Dollars.”
As you may know, the Fernald League is a family and guardian-supported, nonprofit organization that has been fighting to preserve the Fernald Developmental Center and other Intermediate Care Facilities in Massachusetts for persons with developmental disabilities.
We take exception to the recommendation in your report that all six remaining ICFs in Massachusetts be closed. We believe that with respect to the ICFs, your report is flawed from both a research and policy perspective.
First, there is what we consider an unexamined and unsupported assumption in the report that deinstitutionalization of all Department of Developmental Services clients and the accompanying privatization of their services is beneficial. This assumption discounts evidence that community-based care isn’t right for everyone and that community care in Massachusetts doesn’t meet the stringent standards set forth for ICFs in Title XIX of the Social Security Act.
Your report cites the 1999 Olmstead U.S. Supreme Court decision as mandating community-based care for most individuals with developmental disabilities. But the report fails to acknowledge that the Olmstead decision also states that institutional care remains appropriate for those who wish to remain in institutions and in cases in which their clinicians recommend it.
Secondly, your report’s contention that closing DDS facilities will save money appears to rely solely on numbers provided by the Patrick administration – specifically the “DMR Community Services Expansion and Facilities Restructuring Plan, Revised March 9, 2009.”
The Fernald League asked for backup information for the administration’s cost-saving claims and found that the analysis supporting them was wholly inadequate. For instance, the administration compared the cost of care at the Fernald Center, which primarily houses residents with profound levels of mental retardation and complicated medical issues, with the cost of care for the average resident in the community system. These two populations cannot be treated as if they are identical.
An analysis of 250 studies by the journal Mental Retardation concluded that cost savings are relatively minor when institutional settings are closed and, if there are any at all, they are likely due to staffing costs when comparing state and private caregivers. (Kevin K. Walsh, Theodore A. Kastner, and Regina Gentlesk Green, Mental Retardation, Volume 41, Number 2: 103-122, April 2003.)
In a January 2009 update to the 2003 study, Walsh, the lead author, concluded that the conclusions of the article continued to be valid and stated:
…when certain costs disappear, when individuals are transferred from ICF/MR settings, it is highly likely that these costs will reappear in other state budgets (such as Medicaid). In nearly all instances, this is almost unavoidable. In short, costs don’t just disappear when individuals are moved.
The MTF/BF report should acknowledge that any cost savings in closing institutions would largely come from reduced staffing per client and reduced pay and benefits to caregivers in the community-based system.
The administration’s cost savings projections also failed to include costs of renovating and constructing new facilities for residents transferred from the ICFs. And it did not take into account long-stated proposals to reduce the size of the existing facilities and to allow development of the unused portions of the campuses.
We would make the following additional points about your report:
1. Your report repeats outdated myths about institutions, such as that they are “isolated” and “antiquated.” This disregards the high levels of community interaction and involvement that are characteristic of the staffs and programs at the Fernald Center and the other ICFs. Examples are the Tufts Dental Clinic at Fernald, which primarily treats community-based patients, and the Greene gym and therapeutic pool, which were used by both residents of Fernald and the DDS clients in the community.
Moreover, the use of terms such as “antiquated” in describing the developmental centers also disregards the substantial, court-ordered improvements that have been made to these facilities in Massachusetts since the 1970s. By 1993, Judge Tauro, who oversaw the consent decree that brought about those improvements, described the care provided in the developmental centers as “second to none, anywhere in the world.”
The American Health Care Association has noted, in reference to ICF-level institutions around the country that:
Changes and improvements in ICF/DD support and training services have created one of the most progressive and technically advanced programs anywhere in the world. For residents, quality of life has improved dramatically, as access and choice have become hallmarks of the ICF/DD program. Support and training programs now provide them with increased opportunities to live in more home-like, less restrictive settings and, to the extent possible, to become a more integral part of their communities.
2. Your report claims that levels of abuse and neglect were lower in the community system than in the ICFs, and says this is based on an analysis of Disabled Persons Protection Commission figures from 2007 through 2009.
Your analysis is at odds with U.S. Attorney Michael Sullivan's findings about abuse and neglect, which were part of his 2007 report to U..S. District Court Judge Joseph Tauro. Attorney Sullivan’s findings were based on DCCP figures for ICFs from 1996 through 2007, and for vendor homes from 2002 through 2007. Sullivan's report stated that there were "much higher" levels of physical abuse in the vendor homes than in the ICFs and higher levels of sexual abuse in the vendor homes than in the ICFs. He reported there was little to no sexual abuse reported in the ICFs.
Your report, moreover, acknowledges that your analyses "did not adjust for differences in the caseload of clients served or the reporting practices in different settings that may contribute to different rates."
We think that caveat in your report is an important one. We would submit, for instance, that abuse and neglect are more likely to be reported in the ICFs than in the community-based system because of the more concentrated presence of doctors and clinical staff in the ICFs, who are knowledgeable about signs of abuse.
3. Your report seems intellectually inconsistent in arguing, on the one hand, that consolidating area offices in the Executive Office of Health and Human Services would achieve economies of scale and convenience for clients, and, on the other, that all DDS clients should live in widely dispersed group homes.
Why shouldn’t the convenience and economies-of-scale arguments apply in the case of the developmental centers as well? In fact, they do. The centralized delivery of services in institutions such as Fernald offers savings in transportation, clinical, dental and other costs, and offers convenience to the residents, who receive their clinical, medical, and program services in one location.
In closing, we are dismayed that your report goes even further than the Patrick administration in urging the closure of all remaining ICFs in Massachusetts. The Massachusetts Taxpayers Foundation and the Boston Foundation are taking a radical position in t
his regard, which would have devastating consequences for persons with the most profound levels of mental retardation, medical issues, and behavioral issues.
Even the Department of Developmental Services has acknowledged that ICF-level care is not only needed in Massachusetts, but may in fact be less expensive on an individual basis for certain hard-to-serve clients than community-based care. (See the Report of the DMR Facility Planning Working Group, May 2002, Appendix 7).
Alfred Bacotti, a former Director of the Glavin Regional Center, has noted that the Glavin Center, now slated for closure, has served as a backup to individuals with developmental disabilities who experience “extreme difficulty” in community settings. He also pointed out that services provided to individuals at Glavin, such as non-time limited psychiatric stays and dental, are not currently available in the community system.
There is no doubt that our human services tax dollars could be spent more wisely. We commend the Massachusetts Taxpayers Foundation and the Boston Foundation for taking on this issue and producing a report that opens these issues to public debate. However, we do not believe that the major finding and recommendation in this report dealing with the future of the DDS system advances this debate in a meaningful way.
Sincerely,
Marilyn Meagher
President
David Kassel
Communications Consultant
The Fernald League, Inc.
I haven’t had a chance to read their report.
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p>A couple of question occur to me, how do these two “think tanks” decide what they are going to “think” about? Do they pull their topics out of thin air or are they requested? If they were asked to think about this subject, who asked? If it was DDS or the Governor, why ask for this study yet try to block the study the legislature was seeking?
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p>At the time of the original post, I looked at these organizations filings on the AG website. I’ll have to double check but I thought I read MT had six figure unfunded pension liabilities (the amount just about exceeded their annual payroll) per their financial statements. Maybe they should get their own finances in order before they start telling the rest of us how to do it.
After reading the full report several thoughts come to mind. The first thought and most glaring is that I always thought better of the Boston Foundation. What I mean by this is the Boston Foundation has a great deal of influence and respect within its community. To co-author a report that is clearly slanted, with only slanted sources of information and to allow misrepresented facts, is appalling.
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p>First and formost the Olmsted decision does say “community intergration” but not for all as it is represented in this report. What it says is “community intergration” for those who can live in the community and who want to. To represent the cost savings of closure and not read other information that refutes the cost savings argument is wrong.
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p>Secondly, the sources of information for this report represent one side. The main sorce is the Department of Developmental Services stategic plan. Did the Mass Tax Payers or the Boston Foundation ever talk to the parents or guardians of the residents of these ICF/MR developmental centers or the organizations that support them? The answer is no!!
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p>Did the Mass Tax Payers and the Boston Foundation tour any or all of the developmental centers, the state operated or vendor operated group homes? My guess is NO!! If they did they would see the great work that is being done in the ICF/MR Developmental Centers and the level of need that the majority of the residents need and cannot possibly get in the community in the current system.
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p>Third does the MAss Tax Payers and Boston Foundation even understand what an ICF/MR is and that there are currently over 500 in the US serving over 50,000 individuals.
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p>Lastly, the numbers in the report make it look like the ICF/MR Developmental Centers are not as safe as the community. The fact is that due to the high level of oversight in ICF/MR’s vs the community there could be more complaints. But more importantly the lack of oversight and intimidation of clients, guardians and families (espically in the Northeast Region)by DDS management vendors and Directors is the real reason for the lack of complaints. Parents and guardians have been threatened that their loved ones place of living would be shut down or the individual would be transfered, or bodily harm may happen, by being told if they filed any complaints
is the real reason for a lack of complaints.
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p>When a report like this is written and can impact so many people who cannot help or protect themselves, more effort should be put into getting both sides of the story.
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p>This is not a money issue as the Mass Tax Payers and Boston Foundation want everyone to believe. This is an issue of human beings…people…who are 100% dependant on others for everything they need.
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First, I want to say that Dave wrote an excellent rebuttal to the report “The Utility of Trouble:Maximizing the Value of Our Human sevices Dollars.”
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p>I do have one concern that Dave talks about the other services provided on an intermediate care facility campus that are used by intellectually challenged individuals living in the adjacent cities and towns, the Tufts Dental Clinics, a theraputic swimming pool, gymnasiums and medical clinics. The integration of community residents to ICF campus services is not a oneway street. Dave does not mention the community services used by the ICF residents like restaurants, theaters for movies and concerts, shopping malls, etc. The ICF residents view their congregate living facility the same as residents of a condominium complex or a retirement community like Bright Horizons in Danvers. Their ICF home is the least restrictive arrengement for them but it is not a segregated facility.
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p>I just read a couple of comments suggesting the Massachusetts Taxpayers Foundation and the Boston Fouundation received a lot of their information from the Department of Developmental Services and did not talk with other advocates. Next week I will expect the DDS will cite this report as proof that they are correct and all the other advocates are wrong. Does anyone else see a repeat of the past administration leaking information about Iraq to a newspaper on a Wednesday and then quoting that paper as proof that their position is correct on the Sunday talk programs?
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p>Mav
Mav brings up a good point. The residents of the ICF/MR Developmental Centers are not only using community resources but are opening their doors and and land to the communities around them.
In Northern Virginia there are a series of 5 person
being built on part of the the land that a Developmental Center resides. The plan is move ther residents from the Developmental Center to these homes when they are done. One would think there should be no problem with this plann. However, there is. The 5 person homes are under the ICF/MR title 19 designation.
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p>According to the local advocates I spoke to including the Director these home have come under fire from community advocates. Why? The answer is simple. The ICF/MR designation which comes with many more levels of service but also with many more levels of oversite.
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p>In Massachusetts, like Virginia high levels of
means community based group homes espically vendor operated group homes cannot function.
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p>The “community system” cannot stand up to rigors of the same levels of oversite as do the ICF/MR’s. Does anyone see a problem with that? We are talking about a population of individuals that for the most part cannot protect or defend themselves. And when they do report, these individuals are not considered to be “credible”, therefore the complaint is closed. What all of this means is, that the community system should be held accountable to the same level of oversite as the ICF/MR’s
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p>I do not know about Virginia but Massachusetts wants out of the businees of direct care of individuals with MR/DD. If that is the case then what are the options. The only option is the vendor system. Please note: that there are some great vendors providing services and in fact these vendors have been known to “self-report” violations to DDS. I know, “self-report” sounds crazy but these vendors look at careing for these individuals as a mission and not just a way to make a profit (although they are all non-profits).
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p>If this happens then what will become of CHOICE or ONE SIZE DOES NOT FIT ALL.
Actually I read only as much as I could stand to read. Just a rehash of the Community First plan…nothing new other than recommending the closure of Hogan and Wrentham and suggesting that direct care staff in group homes can also coordinate services in addition to cooking, cleaning, shopping, doing laundry, maintenance, etc. etc. while trying to provide personal care to the residents. This just indicates they have no real understanding of what is entailed in providing quality care for these people.
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p>Just a some comments from what I could stand to read:
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p>They should loose the word “institution” in favor of what we call ICF/MR facilities “Developmental Centers”. The word just furthers the negative image of these facilities. The report refers, several times, to the re-invention of the care and treatment of people with MR/DD 40 years ago. They stopped being “institutions” 40 years ago.
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p>The report, like everything else, is filled with the generalizations of “many” and “most” but fails to address the “few” that can not live in a community-based setting. There will always be a few that can not adapt. Just because they refuse to address this fact, doesn’t mean it doesn’t exist. What about them?????? I dare say the guardians of Fernald who have been fighting for almost 8 years feel their family members are part of the few not the many…why else would they fight for 8 years? As the state marches forward with their other closures, my guess is they will see more resistance.
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p>It mentioned the successful closure of Belchertown and Dever. It infers that all residents moved to the community which is not true. It fails to mention how many of those people transferred to other ICF/MR facilities. If they did mention that number it would be counter to the intent of this report. It would indicate that, notwithstanding all the accolades regarding the community, some required/preferred the care available at ICF/MRs. The community-based system of care is not new, it been around for decades. If it was the right fit, don’t you think guardians would have made that move years ago or are they all just misguided.
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p>Even though it has sections that differentiate between DMH and DDS, there are portions of the narrative where the two are intertwined which is misleading. Mental illness and Mental Retardation are completely different and they are not interchangeable. The fact that these two are grouped in any paragraph indicates to me they have never been to a Developmental Center and have no clue about the people or what they are all about.
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p>This report has an issue date of July 2010. It mentions several time in the footnotes that it obtained “current” census information. Why was current budget information not included. If they could pick up the phone to call DDS for the number of people, couldn’t they go to the state website and get current budget numbers. The facility budget as of June 30 was $150M. The declining census compared to the previous higher budget further skews the per person costs. The per person costs have never been substantiated to begin with. It admits it doesn’t include all the sources of funding. If you are going to publish a report that recommends the closure of the homes of the most disabled and vulnerable people in our society you’d think you would have all the facts. I’m still trying to figure out where the reported $20M savings from Fernald’s closure went. PS FERNALD IS NOT CLOSED.
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p>They also don’t have the correct number for renovations at Wrentham. $1.75M to renovate two old bldgs….those renovations are close to $3M. There is a reason those bldgs were put out of service years ago–they were beyond economical repair. Likewise, if the 100 year old facilities are in a state of disrepair, it makes me ask why that is? Must be the same reason you need a front-end alignment after driving down Rte 93.
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p>One particularly offensive quote from the report “moving people out of institutions to a meaningful life in the community…” Who are these people to decide what constitutes a meaningful life? Does this mean that because some people with DD/MR can not survive in the community their lives are meaningless?
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p>I think its fantastic that people who have the ability can live and thrive in the community. I know there are many high quality providers in the community. But for some, our developmental centers provide the most appropriate level of care in the least restrictive environment. Why should that not be available to them….because this biased, incomplete, inaccurate and uninformed report says so?