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Why the Fernald land deal should include a plan for the developmentally disabled
The history of what is now known as the Fernald Developmental Center hasn’t been free of some serious blemishes or controversy. But from 1889 to the present time, Fernald’s 200-acre campus in Waltham has been the site of a facility providing residential care for persons with intellectual disabilities.
That’s all about to change permanently.
Under legislation negotiated among representatives of the Patrick administration, the City of Waltham, and local legislators, the state will sell the campus to the city for $3.7 million, which comes to 18,500 per acre — a price that has been described as “dirt cheap.” It appears there is also a requirement that the city pay the state up to half the proceeds from the re-sale of any of that land to developers.
There is just one group of people that seems to have been left out of the plans and negotiations. That group is the developmentally disabled — the very persons who had been living at Fernald all along. Other than keeping the therapeutic swimming pool open at Fernald and maintaining a 29-bed nursing home on the campus, there appear to be no plans to continue to provide care or services at the Fernald site for persons with disabilities who live in the surrounding community.
This is an unfortunate oversight, not only for the residents who have been forced to leave Fernald, but for developmentally disabled people in the community. As I’ll explain, the lack of a plan for integrated, community-based care at the Fernald site has been, and will continue to be, both a missed opportunity to help those waiting for services and a potential waste of taxpayer money.
First, I would note that the Fernald Working Group, a coalition of local organizations, had recommended that a portion of the campus remain the site of residential care and services for the intellectually disabled. Similar proposals have been made over the years by the former Fernald League and COFAR. Both of those latter groups suggested a “postage-stamp” arrangement under which existing residents would live in housing situated in a small area of the campus while the rest of the campus was converted to other uses. And Waltham Mayor Jeannette McCarthy, the chair of a Fernald Reuse Committee, also publicly supported the continued use of part of the campus for institutional, residential and health care.
But the then Romney and subsequent Patrick administrations were interested only in one thing — closing Fernald and three other developmental centers in the state, contending the state would save tens of millions of dollars a year in doing so. They never considered any of the proposed alternatives to the closures, and have never done what administrations in other states have done, which is to propose the integration of congregate care facilities for the developmentally disabled with their surrounding communities.
The result is that since 2008, two of six remaining developmental centers in Massachusetts have been closed; a third center is being converted to state-run group homes, and just two residents of the Fernald Center remain on the campus out of a total of 160 who were there at that time. Most of the residents living in the four facilities targeted for closure were dispersed around the state, with the majority going either to state-operated group homes or to the Wrentham Developmental Center. Why has all of this been a missed opportunity and a potential waste of taxpayer money?
First, with regard to the cost to taxpayers, the administration projected that Fernald would be closed by July 2010, but the closure was blocked for four years by administrative and court appeals filed by guardians on behalf of some 20 remaining residents there. The administration elected to keep Fernald open only for the remaining residents there, pending resolution of their administrative and court appeals. This turned out to be an extremely inefficient way to proceed.
Not only has there been an undisclosed cost to the state in fighting the legal battle to close Fernald over the past decade, but as the population dwindled in all four targeted facilities, the cost per resident of care there shot up due to fixed costs such as heating and other utilities in larger buildings. This was particularly true for Fernald, which has remained open for more than four years with 20 or fewer residents.
The administration could have saved millions of dollars a year since 2010 had it been willing to consider and negotiate an alternative to outright closures of the facilities. The legal battle over Fernald would have ended immediately, and instead of continuing to house the remaining residents in several locations on campus, the state could have built small, cost-efficient housing in one location for the residents. That proposed alternative to closure has rarely if ever been reported on by the media, which has instead adopted the position of the administration and its corporate providers that the high cost of continuing to operate Fernald has been solely the fault of the residents remaining there.
Moreover, dozens of the Former Fernald residents were sent, as noted, to the Wrentham Center, which amounted to transferring residents from one developmental center to another. Not only was there no real savings in doing this, but the administration was forced to undertake renovations at Wrentham in order to accommodate the former Fernald residents — a project that cost taxpayers at least $3.2 million.
There is a second, and potentially greater, cost to taxpayers in closing Fernald and the other developmental centers without planning for any continuation of care at those sites that could be integrated with their surrounding communities. As we have noted, an undisclosed number of developmentally disabled people throughout the state have been unable to access services or care from DDS due to a lack of resources. The state has tried to address this problem by expanding the provider-run residential system, which has involved building more than 150 group homes spread around the state since 2008 and substantially increasing rates paid to the providers.
But there is no centralized system of care in the provider-run system. People have to be transported to day programs and for medical and other types of care — a process that is potentially much more expensive than if all of this care were available in centralized locations. Continuing to provide centralized care at developmental center sites could both allow more people in the surrounding community to receive services and provide those services more cost-effectively than is the case in a system consisting almost entirely of disbursed group homes.
We have also pointed out the potentially high cost of privatized care in Massachusetts and elsewhere due to the thick layer of highly paid corporate executives in that system.
That there isn’t necessarily a long-term savings in transferring people from developmental centers to decentralized, provider-based care has been acknowledged even by one of the leading proponents of deinstitutionalization in the Obama administration. I’ve blogged about a law journal article written by Samuel Bagenstos, a former top litigator in the Justice Department’s Civil Rights Division, in which Bagenstos stated that any cost savings in closing developmental centers “will shrink as people in the community receive more services.” He added that a significant part of the cost difference between institutional and provider-based care “reflects differences in the wages paid to workers in institutional and community settings — differences…that states will face increasing pressures to narrow.”
All of this is why we supported the vision of the Fernald Working Group, which described “a progressive site at Fernald where open space and greenways can be matched with an equal vision of integration for individuals with disabilities.” That vision encompassed both existing residents and disabled persons in the surrounding community. The Working Group specified that this vision included new housing and the preservation of the therapeutic pool and gym at Fernald as well as the chapel and programs for physical therapy, dental and medical services. As the vision statement noted, “all of these services could become part of the community and economic life of the Fernald redevelopment.”
But as far as we can tell, the Working Group’s vision has not been adopted by either the administration or the Legislature. While the newly signed legislation to sell the Fernald land to the city provides incentives for adopting “smart growth principles” and affordable housing in the development of the site, it makes no mention of continued services or care for persons with developmental disabilities.
Last week, I emailed Senator Michael Barrett and Representatives Tom Stanley and John Lawn, the key sponsors of the land sale legislation, to ask whether the continued use of a portion of the Fernald campus for individuals with disabilities was considered in the negotiations over the bill and whether any provisions for that might be made in the future.
A staffer in Barrett’s office said that no proposals to serve the developmentally disabled at Fernald were made at a public hearing on the land sale bill that was held in July by the Legislature’s State Administration Committee, and the idea was therefore not considered. But while the Village at Fernald concept for the disabled may not have been raised at a public hearing earlier this summer, most, if not all, of the negotiating parties to the legislation have long been aware of that concept. It should have been a part of the legislation from the beginning.
New DDS eligibility law will leave many out in the cold
Like at least two other bills signed into law this month, a new law that will make adults with autism and certain other conditions eligible for services from the Department of Developmental Services was the subject of closed-door negotiations between key legislators, selected advocates, corporate providers, and the department during the past legislative session.
And like the new “Real Lives” and national background check laws, the resulting omnibus DDS eligibility law, while well-intentioned, raises a number of uncertainties and questions.
The problematic definition of “developmental disability”
The new law specifies that in addition to people with intellectual disabilities, people with autism and conditions known as Prader-Willi Syndrome and Smith-Magenis Syndrome will be eligible for DDS services. Until now, state law has restricted eligibility for DDS services to people with “intellectual disabilities,” as measured by a score of approximately 70 or below on an IQ test.
The existing eligibility standard has left out many people with developmental disabilities, including autism, even though those conditions may severely restrict an individual’s ability to function successfully in society. If those people score higher than 70 on an IQ test, they are routinely denied services.
In addition to changing that standard, the new law establishes a permanent new autism commission and authorizes the establishment of tax-free, individual savings accounts to pay for a variety of DDS and other services.
We have written before about the lack of services available to people with autism, Prader-Willi Syndrome, and other developmental disabilities. It’s unclear, however, how many additional people will be helped by the new law and how many will be left out, in part because of the way the law was drafted, and in part because it is unclear how many people with developmental disabilities currently go without services in Massachusetts. The administration does not maintain a publicly disclosed waiting list for services.
We are glad to see that the Legislature has recognized that having an intellectual disability is not necessary to establish that an individual has severe functional limitations and needs DDS services. The Disability Law Center (the DLC), a federally funded legal advocacy organization in Massachusetts, maintains that Massachusetts is the only state in the nation that has had such a narrow standard for eligibility for services.
But in specifying three additional conditions that make individuals eligible for DDS services, the new law necessarily leaves out other conditions that can and often do result in many of the same types of functional limitations, such as Williams Syndrome, spina bifida, and cerebral palsy. We raised concerns about that aspect of the legislation earlier this year, noting that the selection of the specific conditions listed in the legislation was not subject to a public hearing before the Children, Families and Persons with Disabilities Committee, but was the result of closed-door negotiations.
A post currently on the The Massachusetts Association of Developmental Disabilities Providers (ADDP) website homepage states that the ADDP’s affiliated organization, the Arc of Massachusetts, played a key role in those final negotiations over the DDS eligibility law and the two other new laws as well — the national background check and Real Lives laws.
COFAR and the DLC supported a previous definition of developmental disability in the DDS eligibility legislation, which did not specify a limited number of conditions, such as autism or Prader-Willi Syndrome. The previous definition stated only that a developmental disability involves “substantial functional limitations” in three or more “major life activities,” which include such things as self-care, “receptive and expressive language,” learning, mobility, the capacity for independent living, and economic self-sufficiency.
We have noted that specifying certain conditions as eligible for state services and leaving out others may violate both the federal Rehabilitation Act and the Massachusetts Constitution, both of which prohibit discrimination solely on the basis of disability. Withholding support for this restricted definition, in addition to COFAR, is the DLC. As one advocate noted, the addition of three specified conditions for DDS eligibility to the existing requirement of intellectual disability “does very little to move us out of the bottom tier of all states” in the narrowness of the state’s eligibility criteria for services.
The lack of a state-care option
Another potential problem with the new law has to do with the makeup of the permanent autism commission. The commission specified in the law will consist of 35 members, including legislators, administration officials, the Arc of Massachusetts, and advocates from autism advocacy organizations. There are no seats on the commission for any advocates of state-run care for the developmentally disabled.
We think this is an unfortunate oversight in the makeup of the commission because we believe that state-run group homes and other facilities will be needed to accommodate the influx of new people who will become eligible for care under the new law. As we have pointed out, the administration has been underfunding and even dismantling state-run care options for people with intellectual disabilities, and designating provider-run settings as their only option in most cases.
With potentially thousands of people added to the DDS eligibility lists as a result of the new law, a large percentage of that population will still not be able to get residential care or services due to a lack of DDS resources for community-based care. If DDS continues to close state-operated group homes as it has been doing, this is only going to continue to make the situation worse.
State-run residential care is provided in Massachusetts by staff with better pay and training than is usually available in provider-run facilities. As a result, we think an advocate of state-run facilities on the autism commission would introduce a needed point of view in the commission’s deliberations.
We did support the addition to the autism commission of a member with clinical knowledge of Smith-Magenis Syndrome. Amendments to the legislation, which added that member to the commission and added Smith-Magenis Syndrome (SMS) to the conditions listed in the law, were filed on behalf of the Duzan family, whose daughter, Sara, has SMS. The amendments were adopted.
As we have reported, Sara Duzan has been subjected for many years to poor conditions and treatment in provider-run residential facilities, according to her family. Part of the problem in her care has been that few providers are knowledgeable about SMS, which is often characterized by behavioral outbursts. As a result of that lack of knowledge, Sara has often been subjected in residential facilities to the inappropriate use of restraints. In addition, members of the Duzan family themselves have often been inappropriately and unfairly blamed by providers, probate court judges, and even clinicians and state administrators, in our view, for causing Sara’s outbursts.
Other issues
Another area of uncertainty in the new DDS eligibility law concerns its authorization of so-called ABLE accounts, which allow families of developmentally disabled people to establish tax-free savings accounts for expenses including education, housing, and supports and services. It is unclear what relationship these accounts might have to “individual budgets” established under the newly signed Real Lives law. We have expressed concern that those individual budgets do not appear to fall under the control of guardians of disabled clients.
Like the Real Lives law, which provides for the involvement of private financial managers in administering clients’ individual budgets, the new DDS eligibility law provides for the authorization of private entities to manage individual ABLE accounts.
As is the case with the national background check and Real Lives laws, we hope that the Legislature addresses the problems we have identified in the DDS eligibility law in its upcoming session.
New DDS background check law has delayed requirements
A new national criminal background check law in Massachusetts may well have a major, positive impact on services and care for people with developmental disabilities in the state.
But under the law, the background check requirement is delayed for many, if not most, current employees in the Department of Developmental Services system for more than four years, until January 2019. The requirement is delayed for a year and a half for prospective employees in the system.
The long-awaited law, which was signed by Governor Patrick last week, authorizes national criminal background checks for persons hired to work in an unsupervised capacity with persons with developmental disabilities. The law will ultimately require that both current and prospective caregivers in the system submit their fingerprints to a federal database maintained by the FBI. The law applies to DDS employees, employees of corporate service providers to the department, and caregivers over the age of 15 of persons living at home.
Up to now, persons hired to care for clients in the DDS system have had to submit only to an in-state criminal background check, which identifies only criminal arrests and convictions in Massachusetts, and does not identify any convictions a job applicant might have from another state. A national background check system will fill in that potential gap in the applicant’s history.
The new law’s fingerprint requirements, however, will be phased in through January 2019 for current employees, and will not take effect for new employees until January 2016. Another provision in the new law that raises questions appears to allow employees to be hired before the results of their background checks are obtained. That provision states the following:
Department-licensed, funded or approved programs and providers of transportation services on behalf of any department-licensed, funded or approved program may hire individuals without first obtaining the results of a state and national fingerprint-based criminal history check (my emphasis).
It’s not entirely clear to us what the intent of this provision is or what its impact might be. It appears to allow people to be hired before they are cleared through the FBI database. The provision does not specify a time frame for obtaining the background check results after an individual is hired.
Does this provision mean that even after January 2019, someone could be hired by DDS or a provider and could work for weeks or possibly months with developmentally disabled people before their background results are obtained or before their backgrounds are even checked? Furthermore, does the provision allow for that leeway even for in-state background checks?
I contacted the staff of the Legislature’s Judiciary Committee earlier this week to ask about that provision and the provisions phasing in the background check requirements until 2016 and 2019. It was apparently in the Judiciary Committee that these provisions were inserted. Interestingly, the Judiciary Committee staff person I talked to referred me to Philip Johnston Associates, a Beacon Hill lobbying firm, which was apparently involved in the final negotiations over the bill, apparently on behalf of DDS corporate providers.
On Tuesday, I spoke to a member of the Johnston Associates firm, who said she was unsure as well about the intent of the provision that appears to allow the hiring of individuals prior to checking their backgrounds, and that she would get back to me. I have not yet heard back from her. I also placed two calls on Monday and Tuesday to the state Department of Criminal Justice Information Services, which is in charge of administering the law. I have yet to get a return call from that department.
The Johnston Associates staff member said the providers and other advocates involved in negotiations over the background check legislation pushed for phasing in the fingerprint requirements due to concerns over the time needed to implement them. A member of the Association of Developmental Disabilities Providers expressed a concern in a news article last week that the new fingerprint requirements could prove burdensome to smaller provider agencies.
It is not clear to us though that more than four years is really needed to phase in the national background check program for current employees in the DDS system, or that a year-and-a-half delay is needed before requiring new employees to be fingerprinted. We’re skeptical that that much time is needed, partly because we’ve witnessed a lack of urgency on the part of both the Legislature and the administration for the past several years in just getting this law passed. It seems possible that that lack of urgency is being carried over into implementing the law’s requirements.
National background check legislation had been proposed each year for up to a decade by then Representative Martin Walsh, now mayor of Boston, before it was finally enacted this year. Each year, the legislation would get stuck in either the Judiciary or House Ways and Means Committees, or both, and then would die at the end of the session. The administration did little during that time to lobby for passage of the measure. As a result, Massachusetts has been only one of a handful of states without a national background check program for people with developmental disabilities.
Meanwhile, the federal government has stood ready to assist the state with grant money under the Affordable Care Act to help implement the new background check law; but Massachusetts has declined to apply for that federal money, which has available since 2010. The state has even been slow to implement national background checks for school teachers and children’s day care providers.
While we’re glad to see that the DDS national background check bill is finally law, we hope the administration now shows a true commitment and sense of urgency in getting it to work.
‘Real Lives’ bill is now law, but it raises many questions
The ‘Real Lives’ bill is now law, and it is somewhat better than the vehicle it was in danger of becoming for the financial benefit of corporate providers to the Department of Developmental Services.
But what has come out of the legislative process late last month is a compromise between two competing bill drafts, even the better of which raised some serious questions. The final compromise was apparently negotiated among key lawmakers in the House and Senate, with the input of a major provider-based organization, the Arc of Massachusetts.
The legislation introduces what is called “person-centered planning” in providing care and services to persons with intellectual and developmental disabilities. It is touted as providing individuals with more choice and “self determination” in the services they receive from the Department of Developmental Services.
One of the main thrusts of the new law is to provide developmentally disabled persons with control over their own “individual budgets” to pay for DDS services. The introduction of individual budgets is billed as a key departure from the current system in which DDS controls the budget process in contracting with corporate providers to operate group homes and provide other services.
But we think the development of these individual budgets is actually where this legislation runs into problems. Many, if not most, developmentally disabled people are not in a position to manage complex budgets involving state and sometimes federal funds or to make informed decisions about their own needs and services. As a result, the law provides that they can engage a “chosen planning team,” “financial management services,” and “independent facilitators” to help them do those things. These entities, some of which will be privately operated, yet state-funded, will work with each individual’s clinical care team to make those planning and financial decisions.
There are two major drawbacks to this approach. One is that the independent facilitators and financial managers will constitute a new layer of bureaucracy, which will mean higher costs to taxpayers as well as a managerial nightmare for DDS.
Who will actually determine, for instance, what a program participant’s individual budget actually is? The law states that DDS “shall negotiate with the financial management service provider uniform rates for each given unit of service, to be paid by each participant from the participant’s individual budget” (my emphasis).
Does this mean DDS is required to enter into negotiations with an undetermined number of private financial management services on behalf of thousands of individual clients?
Related to this is the question whether DDS actually knows what an individual’s total cost of care is, and whether the Department currently calculates that total cost. In the community-based system, these costs are spread over a number of budgets, including the DDS and MassHealth budgets. The Department’s contracts with group homes are based on only a portion of these costs, which are not necessarily specific to the individual residents.
In that respect, we think the Real Lives legislation would make more sense if it involved giving an individual and his or her guardian more authority simply to plan their services, and stopped there. There is no good reason that we can see to also give a program participant authority to manage and disburse state and federal money. That should remain a DDS function. Giving a developmentally disabled individual control over the disbursement of such funding could potentially open them up to financial exploitation. But the new law appears to give those disabled individuals that authority with the following language:
“…with self-determination, the participant has control over the annual budget, the participant is central to and directs the decision-making process and determines what supports are utilized and the service system is flexible, so the participant may tailor the participant’s supports to meet the participant’s needs…” (my emphasis).
The second major drawback in the Real Lives approach is related to the first. The law appears to leave the individual’s guardian almost out of the picture. The “participant” in the program is defined in the legislation as “an individual with disabilities receiving department services and, when appropriate, an individual’s parents, legal guardian, conservator or other authorized representative…” (my emphasis).
As we asked Senator Michael Barrett’s staff, when we were sent his version of the then bill for comments last January, who will determine when it is appropriate to allow an individual’s guardian or family to participate in their ward’s person-centered planning and self-determination program? We noted that the vague language in the bill could leave incapacitated individuals even more vulnerable to financial exploitation by persons other than their guardians or family members who seek to make decisions about their care or financial affairs.
We recommended that a statement be added in the bill making it explicit that in a case in which an individual has a legal guardian, the guardian would be considered the participant in the self-determination program. While Barrett’s office did produce a thoughtful redraft of the very flawed original version of the bill, our suggested language ensuring participation of guardians was not inserted.
The law does potentially give the guardian a consulting role in the development of his or her ward’s individual budget, but that role appears to be an indirect one that is based on a reference to the individual’s care plan or Individual Support Plan (ISP). In contrast is the much more central decision-making role that is given to the developmentally disabled individual himself or herself.
So, the upshot seems to be that while the law gives a central decision-making role to the disabled individual and possibly his or her financial management service, the individual’s guardian will have direct input only in cases in which someone, who is not specified, determines it is appropriate for the guardian to be involved. Otherwise, the guardian has, at most, a consulting role to DDS. This is very troubling to us.
Also, we had suggested that a statement be added to the definition of “self-determination” that participants and their guardians would be given an explicit choice among all available options for care, including state-operated facilities and group homes, provider-operated homes, shared living arrangements, and home-based care. That statement was never added either.
As we have pointed out in a number of posts, both state and federal law provide that developmentally disabled persons seeking services are entitled to a choice of all available types of care, including state-run and institutional care. But DDS routinely denies this choice to applicants for services, and presents provider-operated residential care as their only option.
Another serious problem with the Real Lives law is that the final compromise removed language from Barrett’s version which would have helped ensure that an advisory board created under the legislation is not dominated by corporate providers. We are glad to see, though, that an unwarranted “contingency fund” for the providers was taken out of the bill.
In the final analysis, we think clients, their guardians, and families should have choice over the services they receive, but they should not have to manage state-funded budgets to pay for them. State and local governments fund public school systems in the state, for instance. People have the choice of traditional public or charter schools, but families are not provided with pots of state and local funds from which they then pay the schools via private financial managers.
Service choice is already available to developmentally disabled persons through the ISP process, but it is less robust than it could be. As noted, there is no real opportunity provided to most developmentally disabled people under the current system or under the Real Lives legislation to choose the state-run care option. At the very least, the Real Lives law should be amended to correct that situation and to make the guardian’s role explicit in person-centered planning.
We hope these changes are made to the new law in the next legislative session.
Federal agencies ignore realities of care of the developmentally disabled
Some agencies within the Obama administration have an ideological bias against congregate care for the developmentally disabled that has apparently blinded them to the damage done to countless lives in the name of deinstitutionalization.
That bias, which is held as well by the Patrick administration in Massachusetts, is on display in an article written by a key former Obama administration official about the deinstitutionalization movement from the 1960’s to the present.
The article is by Samuel Bagenstos, former principal deputy assistant attorney general in the Obama Justice Department’s Civil Rights Division and a key litigator in deinstitutionalization cases.
Bagenstos acknowledges in the article, published in the Cardozo Law Review, that the past and pending closures of institutions such as the Fernald Developmental Center in Massachusetts have not resulted in adequate funding for community-based care. But Bagenstos declines to acknowledge the role his own former agency has played in the often checkered expansion of the largely privatized community system that followed the closures of state-run Intermediate Care Level facilities for individuals with intellectual and developmental disabilities (ICFs/IID).
Instead, he argues that if only families of developmentally disabled individuals see fit to team up with advocates of further deinstitutionalization, they can work together somehow to ensure that care will be adequate in the community. We aren’t buying it, and the VOR, our national affiliate, isn’t buying it either.
In a response to Bagenstos’s article, the VOR contends that:
Bagenstos shows no willingness to take responsibility for the tragedies that he and the other advocates caused to these highly vulnerable individuals. Nor have past failures moved Bagenstos to take a more reasoned approach to deinstitutionalization efforts, one that insists on building quality, community placements and adequate oversight before displacing fragile individuals from ICFs/IID.
Instead, closure advocates are turning to new “battlegrounds” (private facilities, nursing homes and adult care homes), without apparent concern for the hundreds of thousands of individuals on waiting lists for community services or the history of abuse, neglect and death that has befallen countless community-based individuals.
In an article this month in The Nonprofit Quarterly, Tamie Hopp, VOR’s director of government relations and advocacy, adds that among the results over the past 30 years of deinstitutionalization of the developmentally disabled are waiting lists in states for residential care that now number nearly 317,000 people, emergency rooms that “have become de facto urgent care clinics” for developmentally disabled people, and correctional facilities that are “replacement treatment centers” for some individuals who have both mental illness and developmental disabilities.
As Hopp points out, U.S. Senator Chris Murphy (D-CT) has called for a U.S. Department of Health and Human Services Office of Inspector General investigation to “focus on the prevalence of preventable deaths at privately run group homes across this nation and the widespread privatization of our delivery system.” The VOR has catalogued hundreds of media reports of abuse and neglect in privatized group homes around the country in recent years.
Yet key current and former officials in the Obama administration seem oblivious to all of this, and so does the Patrick administration in this state. As we have noted, the Obama administration’s National Council on Disabilities (NCD) now labels any facility with four or more residents an “institution,” and has called for the closure of all such facilities. The NCD does not appear to have put any thought into what would replace the care provided in those settings.
Meanwhile, the federal Centers for Medicare and Medicaid Services (CMS) has written new regulations to terminate Medicaid funding for any facilities that happen to be located on the grounds of state-run or private ICFs/IID or even near to them. And just this past week, President Obama signed a bill into law limiting placements for people in sheltered workshops, which the CMS considers to be inappropriate centers of congregate care. Fortunately, the Massachusetts Legislature acted last month to preserve sheltered workshops in this state for those who choose to remain in them.
For some within the Obama administration, the wishes and preferences of the individuals and families most affected by deinstitutionalization do not appear to be of importance. Since 2009, the Justice Department, while at least partly under Bagenstos’ leadership, has filed, joined, or participated in more than 40 lawsuits in at least 25 states to provide individuals what it considers to be “full community integration.” As a result, hundreds of people have been moved from ICFs/IID homes, regardless of whether they or their families or guardians wanted to close the facilities they were living in or not.
In his article, not only does Bagenstos neglect to acknowledge the suffering and damage that has been caused by these institutional closures, but he does not appear to understand the financial corruption that pervades the largely privatized system of care that has replaced the large institutions.
For instance, Bagenstos maintains that “deinstitutionalization advocates now are fighting to expand the amount of state money spent in the community—and, especially in tight budget times, to defend existing community services against cuts.” But this doesn’t appear to recognize that the most potent force for deinstitutionalization advocacy today is to be found among the corporate providers that have moved in to the vacuum created by the disappearance of ICFs/IID. They are actually fighting to expand the amount of state money going into their own pockets, particularly the pockets of the huge bureaucratic layer of corporate executives that run these companies.
Hopp points out that between 1977 and 2010, as ICFs around the country were being closed, the number of residential settings serving people with developmental disabilities increased by more than 1,500 percent, with most of these new settings being small and privately operated.
Bagenstos and many within the current administration also seem not to understand that the federal Americans with Disabilities Act (ADA) and the Olmstead v. L.C. U.S. Supreme Court decision both recognize the need for a range of services for the developmentally disabled, including institutional care for those who desire it. Bagenstos discusses the ADA and Olmstead only as potential legal avenues to boost funding for the community-based system. And he starts with an unproven assumption that community-based care is better in all respects than institutional care.
“Over time, an evidence base has developed that has both refined and demonstrated the superiority of these (community-based) service models,” Bagenstos states in his article. He includes no citation for this claim. In fact, in addition to the problems cited above of abuse and neglect in the privatized system, academic experts have drawn mixed conclusions as to whether people who have transferred from institutional to community-based settings have experienced improvements in the quality of their lives or care.
Bagenstos also appears off base in what he writes about the history of the litigation over the closure of Fernald. He writes:
When Massachusetts responded to fiscal concerns by seeking to close the Fernald Developmental Center, its oldest institution for people with developmental disabilities—even though it offered residents and guardians a choice of transferring to another state institution—Fernald parents sought to reopen a long-closed pre-Olmstead case [Ricci v. Okin] that had been settled in 1993. The parents argued that the closure actually violated Olmstead, because it deprived them of the opportunity to oppose placement in the community.
Bagenstos’s statements about the reasons for the reopening of the Ricci case are overly simplistic at best. The Fernald families alleged in 2004 that by instituting staffing reductions and budget cuts at Fernald, the then Romney administration was violating U.S. District Court Judge Joseph Tauro’s 1993 disengagement order in the Ricci case that required the maintenance of high standards for care at Fernald and in other ICFs. The families also alleged that the administration was re-writing residents’ care plans and failing to certify that the residents would receive equal or better care elsewhere.
Secondly, while the Patrick administration did offer the Fernald residents a choice of a different ICF, the concern among the families, starting prior to the Patrick administration, was that the ICF they moved to from Fernald might itself subsequently be closed, leaving them with the prospect of multiple moves. That concern proved to be well-founded in 2008 when the Patrick administration announced it was closing three additional ICFs in the state, out of six then remaining. Only one of the two remaining ICFs in the state was listed by the administration as not being on the closure list.
Bagenstos also mischaracterizes a bill filed by then Massachusetts Congressman Barney Frank that would have given guardians of persons with developmental disabilities the right to opt out of those lawsuits supposedly filed on their behalf by the Justice Department and federally funded legal aid agencies to close facilities in which those disabled individuals happened to be living. Frank’s bill would also have required the Justice Department to consult with the guardians in any investigations undertaken of those facilities. Bagenstos writes:
Evidently blaming the Massachusetts government’s decision (to close Fernald) on the pressures caused by the threat of litigation, Representative Barney Frank, who represented the district in which Fernald was located, responded by introducing legislation that would limit the ability of federally funded Protection and Advocacy agencies—the source of much Olmstead litigation—to bring cases that could lead to the closing and downsizing of institutions. Both VOR and AFSCME (a state employee union) have vocally supported this legislation. Though the legislation has not moved in Congress, the support by one of its most stereotypically liberal members for a bill that would limit public interest lawsuits highlights the unusual political alliances that continue to surround deinstitutionalization litigation.
In our opinion, Frank’s bill would not have limited any organization’s ability to bring cases to close institutions. As noted, it would only have given guardians a choice as to whether to participate in those suits.
We are glad to see that Bagenstos at least believes that the closures of ICFs will not necessarily save money in the long run. He states that:
Although studies of deinstitutionalization have found that people who move from institutions to the community can achieve better outcomes at lower cost, it is reasonable to expect that the cost gap will shrink as people in the community receive more services. This may be especially true because a significant part of the cost gap reflects differences in the wages paid to workers in institutional and community settings.
In the final analysis, we think, the major problem that the developmentally disabled face is not the threat of institutionalization, it is the lack of adequate care and services in the supposedly deinstitutionalized system. As Hopp notes:
The legal framework is in place to support individualized care and choice. Advocates must set aside efforts to eliminate options of care and work together to expand options. This begins with a commitment to serving each individual: true person-centered planning.
The problem with the approach advocated by Bagenstos and many within the Obama administration is that it advocates the elimination of options for people with disabilities. It is a one-size-fits-all approach to care and services, and that size appears to be steadily shrinking as Bagenstos and others in the administration promote smaller and smaller residential settings that no longer meet high standards of care.
The Sherlock Holmes-style mystery of the secret switch of the ‘Real Lives’ bill versions
How exactly does it happen in the state Legislature that a good piece of legislation gets “lost” just as a bad piece of legislation has been substituted for it?
That seems to be exactly what happened with the ‘Real Lives’ bill this spring in the state Legislature. There has long been a heavy dose of game-playing by corporate providers to the Department of Developmental Services in their years-long quest to gain passage of this bill; but the secret substitution of their preferred version for another, much better, version of the bill this spring may take the proverbial cake.
In this case, the sleight-of-hand move may bring the DDS providers as close to winning passage of their version of the bill (H. 4237) as they have ever been. We understand H. 4237 is going to be sent to the Senate very soon from the House for final passage.
This is a badly flawed piece of legislation. The much better redraft of this bill was approved in early May by the Children, Families, and Persons with Disabilities Committee (H. 4063). But somehow, as noted, that redraft, which was done by Senator Michael Barrett’s office, got lost one month later in the legislative process. Somehow, H. 4237 was substituted for H. 4063 in the Health Care Financing Committee.
When I talked a few weeks ago with a staff member of the Health Care Financing Committee, I was told the substitution was a mistake. But if it was a mistake, it’s one that has yet to be corrected; and it may soon be too late to correct it. (Maybe we can engage a modern-day Sherlock Holmes to find out what really happened to Senator Barrett’s version of the bill. Maybe it has been hidden away in a State House attic, a la Holmes’s Adventure of the Norwood Builder.)
The Real Lives concept is intended to serve the laudable goal of providing intellectually disabled persons and their guardians with greater choice and “self-determination” in obtaining services from the Department of Developmental Services. But as currently drafted, H. 4237 is little more than a vehicle for the financial benefit of DDS corporate providers.
As we have pointed out in numerous blog posts and in our July newsletter, the current text of H. 4237 would inappropriately place DDS provider-based organizations on an advisory board that would help design the self-determination program. These same providers were involved in drafting this legislation, and stand to benefit financially from any program they help create.
In addition, the current draft of the bill would establish a “contingency fund,” which would further compensate DDS providers financially if and when residential clients leave them for other providers. These and other provisions in the current draft of the legislation create unacceptable conflicts of interest.
In contrast, Barrett’s redraft of the legislation, which was approved in May by the Children and Families Committee, would have removed the contingency fund and all references to provider-based organizations on the advisory board. That redraft (H. 4063) would, moreover, have required that more than 50 percent of this board be made up of individuals who are financially independent of any provider.
But as noted, when H. 4063 was sent by the Children and Families Committee to the Health Care Financing Committee in early June, the redraft was removed, and the provider-friendly version of the legislation was re-inserted as H. 4237. As unacceptable as this bill has become, the process under which the redraft was removed from it is equally unacceptable.
Please ask your senator to vote against H. 4237 in its current form, and to send it back to the committees it came from so that Senator Barrett’s redraft can be found and restored to it.
Sheltered workshops for the disabled win big reprieve in Massachusetts
A major effort by advocates of sheltered workshops in Massachusetts to persuade state legislators and the Patrick administration that the workshops provide invaluable skills and activities for their loved ones with intellectual disabilities has paid off.
Last week, Governor Patrick signed the Fiscal Year 2015 state budget, which contains language protecting the workshops from closure. The language states that the state must not “reduce the availability or decrease funding for sheltered workshops serving persons with disabilities who voluntarily seek or wish to retain such employment services.”
The passage of this language appears likely to cause at least a slowdown in the administration’s plans to close all remaining sheltered workshops in the state as early as next June. The administration has contended that sheltered workshops “segregate” people with developmental disabilities from their non-disabled peers in the mainstream workforce. Supporters of the workshops, and we are among them, argue that the workshops provide needed skills and fulfilling work for people with intellectual disabilities, and do not prevent them from contact with peers in the community.
The protective workshop language survived a House-Senate conference committee late last month, and Gov. Patrick had until last Friday to line-item veto it, and chose not to do so. So, it’s now the law.
The legislative victory is largely due to an intensive effort by workshop supporters to get the word out to key legislators — particularly to Rep. Brian Dempsey, chair of the House Ways and Means Committee — of the value of the workshops, and of the contention that the administration and corporate provider-based organizations such as the Arc of Massachusetts were spreading misinformation about them. Dempsey, in particular, has turned out to be a strong supporter of the workshops, particularly in the budget conference committee.
It remains to be seen whether the protective language will help people like Tom Urban, a 55-year-old man with Down Syndrome, who had been employed in a sheltered workshop for the bulk of his adult life, according to his brother and guardian, Richard. Richard said that last December, he was informed that all sheltered workshops were being closed and that Tom would no longer be employed, as of the very next day, in his workshop, operated by Work, Inc., a Department of Developmental Services provider.
“To put it mildly, this was a rather disruptive change in Tom’s life with no opportunity to prepare him for this shocking development,” Richard Urban wrote in an email to Rep. Dempsey in late May. “Moreover,” he said, “no chance was provided for me, as his brother, guardian and caretaker, to voice any opposition, or input, to this policy change imposed by (DDS).”
Richard said that although Tom “has limitations in a variety of areas, his work ethic and paycheck (from his sheltered workshop program) were two constants that allowed him a place on a playing field of equality with his peers, family and friends.” Since his “forced exit from his workshop,” Richard added, Tom “has grown distant, is very confused, and expresses continued sadness over his job loss. His identity, and work community, have been lost, through no fault of his own but by virtue of a policy shift for which I am at a complete loss to understand.”
The effort to close the workshops has been driven by an extreme anti-congregate care ideology that the Patrick administration subscribes to. Simply because a group of disabled people work together in sheltered workshops, the administration considers it to be a “segregated setting.” As a result, we are concerned that despite the budget language allowing those who are currently in workshop programs to remain in them, people like Tom Urban, who have lost their workshop programs or are seeking for the first time to get into one will find not be able to do so. Last year, the administration announced it would no longer allow new referrals to sheltered workshops in the state as of this past January.
In addition, the FY 2015 budget contains at least two reserve funds totaling $3 million to support the transfers of persons from sheltered workshops to provider-run day programs and unspecified job training programs. While the administration contends that intellectually disabled people will all be able to reach their potential in mainstream or “integrated” work environments, there is uncertainty over how many mainstream jobs really exist for most people with developmental disabilities, and many questions about what integrated employment really means.
Sheltered workshops have won a welcome reprieve in Massachusetts, but their future still remains uncertain; and also uncertain are the long-term prospects of fulfilling work activities for thousands of people with developmental disabilities in the state.
The endless shuffle continues for the DDS national background check bill
Does anyone in the state Legislature or the Patrick administration really want to set up a national background screening process for people hired to work with the intellectually disabled in Massachusetts?
Apparently not.
Everybody likes to talk about how important it is to protect the most vulnerable among us from abuse and neglect. Yet the Legislature has been unwilling for years to pass national background check legislation, and the administration has been unwilling even to apply for federal funds that are available under ObamaCare to implement a national background check program.
So far this year, there’s not much reason to think anything is going to change, though there is always a faint hope. This year’s version of the national background check bill (H. 4125) was approved by the Judiciary Committee in late May after the measure had languished there for nearly a year and a half. But it was sent as usual to the House Ways and Means Committee. Every time the bill has been sent to House Ways and Means, it has died there. For years, the bill has been on an endless shuffle between these two committees.
Another piece of bad news for the legislation this year is that the only elected official in Massachusetts who has ever made a recognizable and visible effort to promote it is Martin Walsh, who is now mayor of Boston and no longer in the House of Representatives. For years, as a state representative, Walsh filed legislation to enact national background checks for Department of Developmental Services employees and employees of DDS corporate providers; and as recently as last July, Walsh testified in favor of his bill before the Judiciary Committee.
COFAR and a wide range of other advocacy groups for the developmentally disabled have long urged passage of the legislation. But other than Marty Walsh, we see no elected officials who seem particularly interested in enacting this legislation. You have to wonder why. Is there a special interest group out there that we’ve never heard of that is working to keep this legislation bottled up?
The administration claims to be in support of the bill, but they have not testified in favor of it in recent years, and, as noted, have never applied for available federal funding to implement a national background check program in Massachusetts. That funding, as noted, has been available under the Affordable Care Act since 2010. In that time, the federal Centers for Medicare and Medicaid Services has awarded more than $50 million to 24 states to design national background check programs.
National background checks involve matching a job applicant’s fingerprints against a federal database maintained by the FBI. Every advocacy group for the disabled that we know of agrees that state-only background checks — which is what DDS currently does in Massachusetts — are not sufficient in screening applicants for direct-care jobs because those checks do not turn up convictions for criminal activity in other states.
Massachusetts has apparently not been a leader in background screening of people who work with other vulnerable groups either. In January 2013, Massachusetts did enact a law requiring national background checks for school teachers and early education employees, but it was the last state in the nation to do so.
By the way, where are the candidates for governor and attorney general on this matter?
Please call the House Ways and Means Committee and ask them to finally approve H. 4125 and get it enacted; and please call the governor’s office and ask them to apply for funding available to implement the program.
You can reach the Ways and Means Committee at (617) 722-2990, and the governor’s office at (617) 725-4005.
Parents prohibited from even discussing a visit home with their son
When Stanley and Ellen McDonald tried to share and discuss a COFAR Blog post with their son, Andy, during a visit to his group home on June 22, the residential manager told them to stop, or their visit would be terminated.
The post was about Andy’s 47th birthday party, which was held at Carbone’s Restaurant in Hopkinton on June 6, and it quoted Andy’s wish as he blew out the candles on his birthday cake to someday be allowed to visit his boyhood home in Sherborn where his parents still live. Apparently, even expressing that wish was against the house rules. Andy and his parents are prohibited by a probate court order and by his residential provider and other authorities from even discussing the prospect of Andy ever visiting his hometown, even under supervision.
A probate court judge ruled in 2006 that Andy is sexually dangerous, but Stan McDonald maintains the ruling is based on misinformation and a misinterpretation of a police report from an incident in 1990 in which Andy threatened a neighbor. Andy has never been charged with a sexual offense; the neighbor has long since moved away, and clinical records indicate Andy has not exhibited aggressive behaviors in more than a decade.
Placing restrictions on subjects families can discuss with their loved ones in the Department of Developmental Services system is apparently not unusual. As we have reported, the family of Sara Duzan, another DDS group home resident, was cut off from all contact with her after they allegedly violated a prohibition on discussing care and conditions in the group home with her.
Stan McDonald, who is 78, maintains that Andy had not been expressing a wish on his birthday to return to his home to live, but just to visit his parents, and possibly to hear Stan play with his jazz band at the Sherborn Inn. But while Andy is allowed under his care plan to hear Stan’s band in other locations, not only can he never return to his hometown, he cannot even talk about his wish to do so.
Stan says that after Andy had finished reading the COFAR Blog post with Stan’s and Ellen’s help, the assistant residence manager “expressed what seemed friendly interest, so we gave her a copy.” A few minutes later, he says, the assistant manager handed him a phone with a call from the residence manager, “who told me to desist from talking with Andy about this or she would terminate the visit.” Stan says he reluctantly agreed to stop discussing the post, but “Andy and Ellen and I were deeply offended by the ignorance and insensitivity that was exemplified.”
Andy wants to believe he is a good person, Stan says, so forbidding him even from talking about a wish of great importance to him has affected his self-esteem. Andy’s resulting anxiety, Stan adds, is manifested in certain behaviors such as bolting his food until he sometimes chokes, and rapid and slurred speech.
Yet, even Andy’s psychiatrist will not discuss his desire to return to his childhood home with him. The group home’s solution to Andy’s anxiety is to medicate him, Stan maintains. The situation, he contends, amounts to “emotional abuse” of Andy.
“Andy has been given a life sentence for a crime he never committed – and with no opportunity to appeal,” Stan maintains.
Stan contends that it is the group home management and DDS itself that do not want to discuss the real issues in Andy’s care. At a meeting on June 20 to discuss Andy’s annual care plan, Stan says the meeting was abruptly terminated by a DDS official when Stan tried to discuss written comments he had handed out at the end of the meeting about what he views as issues in Andy’s care that have not been adequately addressed. Those issues, according to Stan’s written comments, include the following:
- Andy’s “extreme anxiety…(which is) directly related to 17 years of refusal of his wishes for visits home — wishes which he is denied even to express,” and the consequent medication to control that anxiety.
- A failure to implement provisions in Andy’s care plan for regular visits to his friend, Tom.
- Sub-standard dental care. His gums are bleeding. He has gingivitis and periodontal disease.
- A need for more regular exercise
- The group home is over-crowded with five residents.
Apparently DDS doesn’t want to discuss any of that. It’s bad enough that the DDS officials in charge of the care and services for Andy would not take the time to listen to his father’s concerns at Andy’s annual care plan meeting. But we particularly do not understand the policy that DDS and its providers apparently have of prohibiting clients in the system from talking about their deepest wishes and concerns, apparently even with clinicians and family members.
How can it serve someone’s therapeutic interest to keep a deep-seated wish or desire bottled up through an enforced order that they not even talk about it? Is it the clinical approach to care in the DDS system to forbid people from talking about sensitive subjects and then to medicate them to control their resulting anxiety? Clearly, that policy is not working in Andy’s case, and we don’t think it’s working in Sara Duzan’s case either.
Does the administration have a double standard in the care of the disabled?
As The Boston Globe reported last week, Governor Patrick has “unveiled an ambitious and potentially costly plan” to reform the way the state’s criminal justice system handles mentally ill people.
The governor has proposed both a major increase in staff at Bridgewater State Hospital and a new facility there where potentially violent patients could receive care, according to the Globe.
We support the administration’s commitment to expanding care at Bridgewater State. But we wonder whether this is yet more evidence of what appears to be a double standard on the part of the administration with regard to care of the mentally ill versus persons with developmental disabilities.
The administration appears to believe that congregate settings are necessary and appropriate for the mentally ill, but not appropriate for the developmentally disabled. In fact, we think Governor Patrick will be known as a builder of major institutional facilities for the mentally ill, yet as a closer of facilities for the developmentally disabled. This appears to us to reflect the absence of a comprehensive plan by this administration for care of all disabled people in the commonwealth.
Why are we building new state facilities and expanding state-run care for one group, yet tearing facilities down, eliminating an intensive care model, and privatizing most services for another group?
In addition to the plans for expansion of Bridgewater State for the mentally ill, the administration has taken major credit for the construction of the new Worcester Recovery Center and Hospital. That facility, which opened in August 2012 at a cost of $302 million, has 320 beds for persons with mental illness. The administration has billed it as “the largest non-transportation construction project (the state has) undertaken in more than 50 years.”
The administration has also apparently realized that intensive treatment models are necessary for the mentally ill. According to the Globe, the administration has declared that mentally ill people “should receive the appropriate care in the appropriate setting.” The Bridgewater proposal includes a plan for spending $10 million for an additional 130 full-time mental health clinicians at the complex. Patrick administration officials told the paper that if the Legislature approves this funding promptly, the additional staff could be working at Bridgewater by September.
The Bridgewater proposal further calls for $500,000 to study the possibility of retrofitting an existing state facility such as Taunton State Hospital or building yet another a new facility to treat and evaluate potentially violent people accused of committing crimes, according to the Globe. The plan gives no cost estimate for the new facility.
At the same time, the administration is closing or has closed four of six developmental centers for people with profound levels of intellectual disability and severe medical conditions, contending these centers are too institutional. Developmental centers provide an intensive level of care that must meet federal Intermediate Care Facility (ICF) standards. ICF rules specify more staffing and monitoring than do federal and state requirements for privatized, community-based care in group homes.
Even sheltered workshops are considered by the administration to be too institutional for the intellectually disabled, and the administration has announced plans to shut those down by June of next year. The administration is, at the same time, pouring additional funding into privatized group homes for the intellectually disabled, scattered in communities throughout the state.
The argument could be made that the administration views institutional care as appropriate for people with mental illness who are violent, and that’s why it is expanding facilities such as Bridgewater State. But that doesn’t explain the construction of the Worcester hospital center; and it doesn’t explain why the administration is eliminating the ICF care model at facilities for the developmentally disabled such as the Templeton Developmental Center, where many people with behavioral problems live.
The alleged assault by a Templeton resident that caused the death last year of Dennis Perry shows that even that facility may not be fully equipped to meet the needs of all the people who live there, and keep them safe. And yet, the administration is closing Templeton as an ICF and converting the facility to group homes, which will only reduce the level of staffing and supervision there. Also, the attempted rape of a woman by a resident of a group home in Chelmsford in 2011 shows that there are intellectually disabled persons with potentially violent impulses who live in the DDS community system.
It has been argued that another difference between facilities for the mentally ill, such as the Worcester hospital center, and developmental centers for the developmentally disabled is that the Worcester facility is meant to help people make a transition to independent living in the community, whereas developmental centers are not intended to do so. Therefore, according to this argument, the developmental centers should be closed, and the remaining system will be devoted either to serving all disabled people in the community or helping them get there.
Our response to that argument is that we have consistently stated that residents of developmental centers who want to benefit, or can benefit from community-based care should be encouraged to do so. As far as we know, there has never been any rule or policy that prevented anyone who wanted to leave a developmental center from doing so and moving into the community system.
As we argued in connection with the Chelmsford group home incident, the real issue is the care model. The administration wants to eliminate the intensive, ICF care model for people with developmental disabilities. The administration does acknowledge that people with mental illness should receive the appropriate care in the appropriate setting. And they appear to understand that the community system is not the appropriate setting for all mentally ill people. But for some reason, the administration hasn’t yet figured out that the community system isn’t the appropriate setting for all people with intellectual and developmental disabilities either.
We do believe that one day, the state will come to realize that institutional care for a certain segment of the developmentally disabled is needed, and there will be an effort to reconstruct our institutional facilities for them. Unfortunately, we’re making that future job much more difficult and expensive by tearing down the system that we have had in place and which we spent so much money to upgrade from the 1970’s onward.
COFAR blog 