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When Big Brother (thinks he) knows best about the developmentally disabled
It can be frustrating when government administrators take it upon themselves to tell citizens what is in their best interest, and that includes telling them what is in the best interest of their family members with developmental disabilities.
It’s particularly frustrating when the state and federal governments tell people that they know best where their family members should or should not live.
For instance, the folks at the federal Centers for Medicare and Medicaid Services (CMS) have determined that farm-based residential programs are not good for developmentally disabled people. Also bad are residential schools for the developmentally disabled, group homes on the grounds of a private developmental or Intermediate Care Facility (ICF), and group homes located in “close proximity” to each other.
Both CMS and the Massachusetts Department of Developmental Services have decided that all of those types of residential settings “isolate” the participants from the “broader community.” But while the feds are not banning those particular settings outright, the state DDS, in a new policy, appears to be proposing to do just that. According to the DDS policy, residents of “noncompliant programs” will be given “the opportunity to move to a compliant setting” or else face possible dis-enrollment from the HCBS program.
It doesn’t appear to matter that the participants may greatly enjoy living on a farm, for instance, or that they may derive many important skills from farm programs that improve their self-care, receptive and expressive language, learning, mobility, self-direction, and capacity for independent living. It doesn’t matter either that their families and guardians may value those skills highly and consequently value those programs themselves.
It also doesn’t appear to matter that thousands of people in Massachusetts are waiting for residential and other care options, and that eliminating potential options, as CMS and DDS are doing, is only going to make that situation worse.
CMS issued a new regulation earlier this year that states that the residential settings they have identified as isolating may not qualify for Medicaid funding that is specifically earmarked for “home and community-based services.” In “guidance” provided on the regulation, CMS criticized residential farm programs, in particular, because “an individual generally does not leave the farm to access HCBS (Home and Community Based Services) or participate in community activities.” CMS said similar things in the guidance document about residential schools for people with developmental disabilities, and about other programs that “provide multiple types of services and activities on-site.”
In its new policy based on the CMS regulation, DDS states that it will not fund or support new residential settings such as farmsteads, “gated or secured communities,” residential schools, settings that “congregate a large number of people with disabilities for significant shared programming and staff,” or even new group homes with more than five residents.
DDS has scheduled public forums on its policy and a “transition plan” to comply with the CMS regulation on November 6 at 6 p.m. at Massachusetts Bay Community College in Wellesley, and November 12 at 10:30 a.m. at Westfield State University in Westfield.
It is not clear what evidence CMS has to make the claims that people in farm-based and other congregate care programs are not provided with access to community activities. The federal agency’s guidance offers no citations or backup information or studies to support its claims.
Moreover, even if it were true that on most residential farms and in other programs providing “multiple services” that the residents are not regularly taken into the community, wouldn’t it make more sense to require that those programs periodically take participants into the community than to effectively ban the programs altogether? Isn’t that throwing the baby out with the bath water? CMS acknowledged that it received many comments about how valuable and therapeutic those farm programs, in particular, are.
By the same token, CMS appears to be ignoring evidence that there is often little or no community integration by residents of small group homes. Yet, even CMS isn’t willing to prohibit Medicaid funding for farm programs, residential schools, or multiple group home settings outright. In contrast to the Massachusetts DDS, CMS has stated that it will subject so-called isolating programs to “heightened scrutiny,” which may result in continuing to fund them if a state makes the case that the settings do not have institutional qualities.
CMS, in fact, specifically rejected the idea of banning group homes with more than a set number of residents. In responses posted on the Federal Register to public comments on the proposed regulation, CMS stated that it had previously proposed defining institutional care based on the number of residents living in a facility, but that:
…we were persuaded by public comments that this was not a useful or appropriate way to differentiate between institutional and home and community-based care. As a result, we have now determined not to include or exclude specific kinds of facilities from qualifying as HCBS (home and community based services) settings based on the number of residents in that facility (my emphasis).
CMS also noted on the same Federal Register site that the goal of its new Medicaid regulation:
… is not to take services from individuals, or make individuals move from a location where they have always lived… The goal of this regulation is to widen the door of opportunity for individuals receiving Medicaid HCBS… to have a choice in how, when, and where they receive services; and to remove unnecessary barriers and controls. (My emphasis).
So CMS states that its goal is to give people choices and NOT to make people move from a location where they have always lived; but the Massachusetts DDS has made it their goal since the Patrick administration came into office to move people away from where they’ve always lived. It’s evident from the language of the DDS policy and from DDS’s own actions over the past several years that the choices of individuals and their families and guardians do not signify here. For instance, only corporate provider-run settings are routinely offered by DDS as options for people seeking residential care.
Yet while the Massachusetts DDS is going beyond what CMS apparently intended in moving to eliminate available options for residential care, CMS has given the states the latitude to do so. As Tamie Hopp of the VOR, a national advocacy organization for the developmentally disabled, noted, states have “incredible discretion in terms of how they operate their Medicaid programs.”
In a publication, VOR contends that the new CMS regulation “continues to demonstrate an ideological bias against disabled people who find friendships and benefits from living together and accessing services and amenities ‘under one roof.'” VOR further suggests that:
…if CMS determines some settings to be too ‘institutional’… it is likely that states will realize higher costs to accommodate transitions to likely smaller, scattered settings where economies of scale will not be realized. Quality of care and access to specialized services may also be affected, exacting an untold cost on affected individuals.
For some, this is really all about cutting Medicaid programs and diverting Medicaid funding to corporate providers, who are being encouraged to operate more and more widely dispersed, and smaller, group homes. The corporate providers in Massachusetts are apparently fine with all of this. In fact, DDS notes in its transition plan that it consulted with “a small stakeholder group (including providers, advocates and participants/family members).” The usual advisors to DDS are listed in the transition plan, including the Arc of Massachusetts and The Association of Developmental Disability Providers (ADDP).
It may just be that the people who are truly isolated in institutions are the folks working at CMS and the Massachusetts DDS, who appear to have little idea of how things work in the real world. Someone needs free them from their ivory towers!
You can help by sending your comments on DDS’s policy to their email address at HCBSWaivers@MassMail.State.MA.US. You can also write to: HCBS Waiver Unit, 1 Ashburton Place, 11th Floor, Boston, MA 02108. Comments must be submitted by November 15.
Why we won’t be at the bill signing at Fenway Park
Tomorrow, Governor Patrick will be at Fenway Park for the ceremonial signing of three pieces of legislation that are intended to make major changes in the care and services for the developmentally disabled in Massachusetts.
Many advocates will be there, but many if not most of those in attendance will be corporate providers to the Department of Developmental Services, who played key lobbying roles in the drafting of each piece of legislation last spring. As a result, as we have pointed out, each of these new laws (because Patrick signed them for real in August) is flawed in a major way.
There really is no reason to celebrate unless and until changes are made in the laws, so we won’t be at the event tomorrow. In a nutshell, here are the problems with the laws:
1. National Background Check law: The law authorizes national criminal background checks for persons hired to work in an unsupervised capacity with persons with developmental disabilities. It will ultimately require that both current and prospective caregivers in the DDS system submit their fingerprints to a federal database maintained by the FBI. Those requirements are long overdue, but they will be further delayed under the new law.
The fingerprint requirements will not be phased in under the law for all current employees in the system until January 2019, 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.
COFAR and the VOR, a national advocacy group for the developmentally disabled, sent a joint message to lawmakers this week that states: “Much harm can be done to vulnerable people due to the delayed implementation and the ambiguous language that we hope was not the intent of the Legislature.”
When COFAR contacted the Legislature’s Judiciary Committee last summer to ask why the committee had approved the delays and the ambiguous provision in the new law’s requirements, a staff member referred us to Johnston Associates, a Beacon Hill lobbying firm. A member of the firm said providers and some other advocates had pushed for the delays. No one could or would give us an answer as to why language was inserted that appears to allow the hiring of employees before their background checks are done.
2. The ‘Real Lives’ law: This legislation had been pushed for years on Beacon Hill by the providers. The stated intent of the measure is to introduce “person-centered planning” into the DDS care system by allowing each DDS client to “direct the decision-making process” and manage their own “individual budgets” for care.
In the wake of criticism earlier this year from COFAR, legislators removed a provision from the bill, which would have named the Association of Developmental Disabilities Providers and the Arc of Massachusetts to a board that would advise DDS in developing the person-centered planning system. Another provision that was thankfully removed would have established a “contingency fund” to compensate providers that lose funding when clients move out of their residential facilities.
But the new law still raises a number of concerns, including providing what appears to be only a limited role for guardians and family members in the person-centered planning process. The law also introduces a central role in the process for vaguely defined “financial management services” and other privately run entities.
In a joint statement this week, the VOR and COFAR called on legislators to “ensure that vulnerable individuals with intellectual and developmental disabilities have the support of legal guardians, when appointed, rather than financial managers or independent facilitators” in undertaking person-centered planning.
The joint statement also urged legislators to add a provision to the law ensuring that persons seeking DDS services would have an explicit choice among a range of care options and settings, including state-operated facilities and group homes, provider-operated homes, shared living arrangements, and home-based care. State-operated care is often not presented as an option to people seeking DDS residential services. Those persons are instead presented only with the option of corporate provider-operated residential care.
3. The DDS eligibility expansion law: This legislation is intended to fill a major gap in DDS care in Massachusetts by extending eligibility for services to people with autism and two other specified disabilities known as Prader-Willi Syndrome and Smith-Magenis Syndrome.
Until the enactment of this law, DDS had restricted eligibility for DDS services to people with “intellectual disabilities,” as measured by a score of approximately 70 or below on an IQ test. That 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.
However, in specifying three developmental disabilities that make individuals eligible for DDS services, the new law necessarily leaves out other conditions that often result in many of the same types of functional limitations, such as Williams Syndrome, spina bifida, and cerebral palsy. The new law was the product of closed-door negotiations among legislators, administration officials, and selected advocacy organizations.
In addition to changing that eligibility 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. The commission 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.
The VOR and COFAR urged legislators this week to make changes in the law “to better identify and serve eligible individuals in need of services and supports.”
In sum, while these new laws have many well-intentioned supporters, major changes are needed in each piece of legislation to enable it to fulfill its purpose and prevent it from doing more harm than good. It is not yet time for everyone to pat themselves on the back as will no doubt be happening tomorrow at Fenway Park.
Heavily redacted state reports raise more questions than answers in sudden deaths of DDS clients
More than three years after the sudden death of a former resident of the Templeton Developmental Center, we have received a report on the matter from the state Disabled Persons Protection Commission, which found that the resident had adequate care and services at the time of his death and that there was no evidence he had been neglected or abused.
But the report is so heavily redacted that it is difficult to determine whether a number of specific questions and allegations that had been raised about the person’s care were actually investigated. It is also unclear why it took nearly two years for the DPPC to provide us with the report, which was completed and approved by a supervisor in the agency in November 2012.
The former Templeton Center resident died on July 24, 2011, four days after he was transferred to a state-operated group home in Tewksbury. The cause of death was reportedly a blood clot in his lung.
This was one of three cases we heard about in 2011 and 2012 in which clients of the Department of Developmental Services, each of whom happened to be a man in his 50’s, died suddenly after being transferred from developmental centers to state-run group homes operated by Northeast Residential Services, a division of DDS. A second case was that of a former resident of the Fernald Developmental Center, who died on July 6, 2011, after having ingested a plastic bag in a Northeast Residential Services group home in which he was living in Tyngsborough.
In that second case, a DPPC report concluded that there was a lack of adequate supervision of the man by his caregivers, although the investigative agency was unable to determine whether the man had ingested the plastic bag while he was in the group home or his day program or was being transported between the two. That report was also so heavily redacted that it left numerous questions about the incident unanswered for us, including whether the man’s care plan may have been significantly changed after he left the Fernald Center.
In a third case, a 51-year-old resident of a Northeast Residential Services home in Chelmsford died of acute respiratory failure on February 7, 2012, after having been sent back to his residence twice by Lowell General Hospital. That man had formerly lived at the Fernald Center as well. We have just requested that report from the DPPC.
While it is of course disturbing that three DDS clients would die suddenly in a relatively short span of time in the same regional group home system, we have no information to indicate that staff in any of the Northeast Residential Services homes were at fault in any of the deaths. These cases may in fact raise more questions about the DPPC’s investigation and reporting procedures than they do about care in DDS-run group homes.
In the case of the man who died of a blood clot four days after leaving Templeton, we raised questions at the time whether the stress of the move may have contributed to his death, or whether there was a medication error or other care issue involved. It was also unclear whether staff familiar to the man while he was at Templeton was available to accompany him to his new residence in Tewksbury. Moreover, we noted that DDS may not have had uniform policies or procedures in place as to whether familiar staff should accompany transferred residents to their new locations.
The DPPC report found that the man had direct-care staff available 24 hours a day and nursing staff “as needed” in his group home, and that there was no evidence that any medication error had occurred.
I have written to the DPPC to ask why it took so long to release the report on the former Templeton resident’s death. I had requested a copy of the report by letter on October 31, 2011. The report is dated as having been completed on November 1, 2012, and as having been approved by a DPPC supervisor that same day. It was mailed to us with a cover letter, dated September 17, 2014.
In contrast, the report on the July 2011 death of the former Fernald resident who ingested the plastic bag, while also heavily redacted, was dated March 29, 2012, and provided to us in May of 2012.
The former Templeton resident’s guardian, who was also his niece, told me after his death in July 2011 that her uncle had had a blood clot in his leg about a year before the move from Templeton (deep venous thrombosis), but the problem had been cleared up. She said he had been put on a blood thinner called Coumadin, but that she later found out that he was taken off that medication while he was still at Templeton. She said she was never consulted about the decision to take him off the medication. The guardian said that other than the instance of thrombosis, her uncle had only minor health problems. He had worked every day in the dairy barn at Templeton.
While most of the discussion in the DPPC report on the issue of the former Templeton resident’s medication appears to have been redacted, there was a statement in the report that “all necessary medications were continued,” and that a review of documentation from July 19 through the day of his death on July 24, 2011, “indicates no medication error occurred.” Due to the redactions, however, it could not be determined from the report which medications the DPPC considered to be necessary. There was no mention in the unredacted portions of the report of any allegation that the Coumadin had been discontinued.
The guardian had also told me the staff from the group home had spent about a week at Templeton with her uncle prior to the move, but she was not sure whether any familiar staff from Templeton accompanied him during the actual transfer to the new residence. The unredacted portions of the DPPC report were not clear concerning this potential allegation either.
According to the DPPC report, the man’s move from Templeton to the Northeast Residential group home had been planned, and staff from both facilities attended the planning meetings. The resident was actively involved in choosing the new residence and visited it along with familiar staff and family prior to moving there, the report stated.
In discussing the circumstances of the man’s death, the DPPC report stated that he had left his bedroom at 9:15 on the morning of July 24, 2011, and had indicated he was not feeling well. Three staff members responded immediately. The man became short of breath and then unresponsive, so CPR was initiated immediately and 911 was called. CPR was continued until the arrival of paramedics, who continued it while the man was transported to a hospital by ambulance. He was pronounced dead at 9:47 a.m.
The March 29 DPPC report on the death of the man who ingested the plastic bag also leaves many questions unanswered about his care, including whether the man’s Individual Support Plan (ISP) had been changed in a significant way after he left the Fernald Center, and whether his level of supervision in the group home was less than the level he had received while at Fernald. There is an indication in the report that the man’s ISP was changed in September 2010, apparently after he moved to the group home, to remove “target (presumably inedible) items” from mention in the plan. Much of this discussion, however, was redacted in the report.
The man reportedly had a history of ingesting foreign objects, a condition known as pica. However, even what was apparently the word “pica” was redacted throughout the report.
It is understandable that public health and human service agencies have a desire to protect the privacy of individuals in their care or their jurisdiction. But it often seems that the desire to redact or withhold information goes much farther than necessary and fails to protect the public’s right to know about these cases. In our view, the two DPPC reports discussed here fall into that latter category. We believe much of the redacted information in both cases could have been made public without compromising either of these individuals’ privacy in any way.
The questions raised about the care and services that were investigated in these cases are important ones. Something seems to be wrong when investigative and other agencies withhold key facts about cases like these and end up being the only ones who know those facts.
DDS policy will disperse people and care
A new Patrick administration policy statement on care and services for people with developmental disabilities states that its intention is to enable people to lead “fully integrated lives” in the community.
But the statement, which was issued on September 2 by the Department of Developmental Services, would appear to take us further down a path of dispersal and isolation of people in the DDS system.
Among other provisions, the policy states that DDS will limit the number of people living in new group homes to five or fewer. Individuals who continue to live in “non-compliant” residences could be dis-enrolled from the Department’s Medicaid-funded programs, the policy states.
In setting the five-person limit, the policy goes even further than a new Obama administration regulation on Medicaid-funded, community-based care on which the state policy is supposedly based. The Massachusetts policy even bans new programs that provide farm-based residential care to people with developmental disabilities, and further appears to ban new residential programs that provide recreation or other programs to groups of disabled people.
All of those programs and services are apparently too “institutional” for the Patrick administration, which apparently believes that any setting that serves more than five disabled people automatically “isolates them from the broader community.”
Massachusetts DDS Commissioner Elin Howe signed the policy, which states that it is based on the new federal rule issued by the Centers for Medicare and Medicaid Services (CMS), which sets new standards for providing Medicaid funding to community-based providers. But while the Massachusetts policy is supposedly based on the CMS rule, the CMS specifically rejected a proposal to specify the number of people who are allowed to live in community-based facilities.
In responses to comments about its proposed rules, the CMS stated that while they initially proposed a limit on the number of people who can live in group homes and still qualify for Medicaid funding, they were persuaded by public comments that “this was not a useful or appropriate way to differentiate between institutional and home and community based care.”
The DDS policy is not as draconian as that of the highly ideological National Council on Disability, which has determined that any facility housing four or more people is “institutional” in nature and should be shut down. Nevertheless, one has to ask why the Patrick administration would set a limit on the number of people who can live in new group homes when even the federal administration, which strongly favors community-based care, has determined that such a limit is not useful or appropriate.
As was the case with sheltered workshops, the Patrick administration has shown itself to be more ideologically opposed to state-run and congregate care than the federal government. It seems to us DDS’s policies on sheltered workshops and community-based care will only further disperse people and services, and ironically, further isolate them. While advocates of deinstitutionalization have long argued that community-based care is intended to reduce isolation, the opposite appears to be occurring.
Other troubling aspects of the new DDS policy on community-based care stem from its statement that DDS will not license, fund or support new residential settings with “characteristics that isolate individuals from the broader community.” That’s fine in itself, but the policy goes on to say that those isolating characteristics are to be found in:
- “Settings that have limited, if any, interaction with the broader community.”
But what does limited interaction mean and who judges it? The policy doesn’t define this. In fact, we often hear complaints from family members and guardians that small group homes provide for virtually no interaction with the broader community. In this sense, we have always considered that larger, congregate facilities provide more of a sense of community, almost by definition, than do many group homes.
- “Settings that use or authorize restrictions that are used in institutional settings.”
What restrictions? The policy gives no further information on this.
- “Farmsteads or disability-specific farm community (sic).”
Why the ban on farmsteads? Farm-based programs have been found to be highly conducive to treatment and well-being of developmentally disabled individuals. Last year, I wrote a post on the SAGE Foundation blogsite about three successful farm-based programs, each of which provides a range of treatment, crafts, and other programs and services to people with either developmental disabilities or mental illness. Many of these farm programs were founded by parents frustrated by the lack of services available to people with autism, in particular.
- “Gated or secured communities for people with disabilities.”
The DDS policy provides no further information on this.
- “Settings that are part of or adjacent to a residential school.”
This provision is a troublesome aspect as well of the CMS rule. How does being adjacent to a residential school somehow makes a residential setting institutional?
- “Multiple settings co-located and operationally-related that congregate a large number of people with disabilities for significant shared programming and staff.”
This appears to limit many potentially effective programs and ideas. I’ve written about two of these ideas to develop residential services and programs for a larger number of people in both community and developmental-center settings. Given the large number of people waiting for care and services in Massachusetts and other states, it makes sense to consider these proposals.
DDS should be looking, as noted, at ways to serve people who are waiting for care. As the Massachusetts Developmental Disabilities Council pointed out in its 2014 state plan, Massachusetts is lagging behind other states in funding and providing care and services for people with developmental disabilities.
The Developmental Disabilities Council described “limited options due to a lack of adequate resources” for adults entering the DDS system. In light of all of that, we fail to understand why the Patrick administration has issued a policy that will only further limit options available to people with developmental disabilities.
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.
COFAR blog 