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Posts Tagged ‘community-based care’

Proposed commission on former DDS state schools needs to acknowledge upgrades in care

May 26, 2021 3 comments

The history of state-run institutions in Massachusetts for persons with intellectual and developmental disabilities is critically important for us to know.

That’s why we support legislation in concept that would establish a commission (S.1257and H. 2090) to study the controversial and often dark history of the state schools.

At the same time, we are pushing for changes in that legislation to ensure that the commission recognizes the significant upgrades in care and services that occurred in those facilities in the 1980s. Those changes were primarily due to Ricci v. Okin, a landmark federal consent decree case overseen by the late U.S. District Court Judge Joseph L. Tauro.

In that regard, the proposed commission needs to recognize that the Wrentham Developmental Center (WDC) and the Hogan Regional Center in Danvers — the state’s two remaining developmental centers or Intermediate Care Facilities (ICFs) — provide state-of-the-art care and services today. We don’t want to see the commission used as a political cudgel to attack ICF-level care in Massachusetts.

The ICFs of today are not the same institutions that were subject to the Ricci v. Okin litigation, which had sought to correct horrendous warehouse-like conditions in them. Nevertheless, ICFs have remained political lightning rods for advocates of deinstitutionalization and privatization of remaining care and services for the developmentally disabled.

For that reason, we want to make sure that the proposed membership of the commission and its written charge will not lead to a preordained conclusion that leaves out the history of these facilities after Judge Tauro’s intervention. To help ensure a balanced review by the commission, we are seeking additional seats on the panel for family members and guardians of current residents of WDC and Hogan.

Statements made by some key supporters of the commission have presented the former Fernald Developmental Center and other state-run congregate care facilities in a negative light. It also appears that the makeup of the commission, as currently described in the legislation, would primarily consist of opponents of ICFs and supporters of further privatization of DDS services.

COFAR has contacted Senator Michael Barrett and Representative Sean Garballey, the prinicipal sponsors of the legislation, to express our concerns.

We do support efforts, as described in the bill, to study the past history of institutional care in Massachusetts, and we agree with the premise of the legislation that records on these facilities are scattered and should be organized. We also strongly support efforts to identify persons buried in unmarked graves on the grounds of some of the former facilities.

As noted, however, a complete history of the state facilities in Massachusetts should include Judge Tauro’s assessment of the developmental centers in 1993, as he disengaged from the Ricci case. He noted that improvements made to the facilities as well as community placements had “taken people with mental retardation from the snake pit, human warehouse environment of two decades ago, to the point where Massachusetts now has a system of care and habilitation that is probably second to none anywhere in the world.”

Alex Green, a key proponent of the commission, recently told Colleen M. Lutkevich, COFAR’s executive director, that he is sensitive to our concerns and will advocate for changes to the makeup of the panel.

The bill currently specifies that representatives of the Arc of Massachusetts, the Disability Law Center, Mass. Advocates Standing Strong, Mass. Advocates Organizing for Change, and the Center for Independent Living would be appointed to the commission. All of those organizations are on record as supporting the closure of ICFs in the state.

The bill also states that additional “community members” and former members of state institutions would be given seats on the commission. But the measure doesn’t recommend seats for current residents of either WDC or Hogan, or their family members or guardians.

We think the perspective of those current residents and their families and guardians is needed to provide a full understanding of how the ICFs function today.

In a written statement provided to COFAR, Green said he is seeking to amend the legislation to add two seats for “facility families–whose experiences deserve representation.” He said he will also seek to add a third seat “for another participant with an intellectual disability, ensuring that the composition of the commission adheres to the intent of being a majority of people with disabilities.”

Green added that, “Many of these families and individuals were part of the civil rights movement that led to the (Ricci v. Okin) consent decree, and also ensured that its implementation resulted in an unprecedented overhaul of, and investment in, these facilities.”

We support adding those seats, but would note that even with three seats on the commission, it would appear that pro-ICF members would be vastly outnumbered by proponents of privatized care.

Green said there were 27 groups “and hundreds of citizens signed on in support of the passage of these bills (the House and Senate versions of the legislation), along with co-sponsorship from 10% of the Legislature. Collectively, these individuals and groups represent hundreds of thousands of disabled people across the Commonwealth.”

Green added that, “COFAR’s support means that important amendments will be made to the bills, helping to ensure that a full, expansive, accurate understanding the consent decree era is included.”

Commission’s written charge needs to be expanded to recognize ICFs today

In addition to specifying that there would be current facility family members on the commission, the language in the legislation needs to be changed to specify that the commission will assess the quality of life of current residents of the Wrentham and Hogan Centers. The legislation, as currently worded, only refers to assessing the quality of life of “former residents (of state institutions) now living in the community.”

The quality of life of both current and former facility residents needs to be assessed in order to present a balanced view of Wrentham and Hogan today. Similarly, the bill language currently only requires that the commission “collect testimonials” from former institutional residents. It does not contain the same requirements regarding current residents. Again, those assessments and testimonials from current residents are needed for that full understanding.

“If we don’t talk about the success story that is Wrentham and Hogan today, it’s not telling the whole story,” Lutkevich said. 

It’s important that we get the history of the state facilities right. That’s because we think that in many ways, the warehouse conditions of the institutional system prior to the 1980s are continuing today in many community-based, privatized settings. We hope that sometime in the not-too-distant future, a commission will be established to study that situation.

Governor’s proposed Fiscal ’22 increase to DDS corporate residential providers is apparently higher than what the state is reporting

March 12, 2021 2 comments

While we knew that Governor’s Baker’s proposed Fiscal 2022 state budget includes a major increase to the Department of Developmental Services (DDS) corporate provider-based residential system, we didn’t know how high that proposed increase actually is.

That’s because the amount of Baker’s increase appears to be under-reported by some $36 million on the state’s Mass.gov website.

The state budget site on Mass.gov currently lists the governor’s proposed funding for the provider residential line item (5920-2000) as $1.41 billion for the coming fiscal year. That would amount to a $121 million, or 9.4%, increase over the amount appropriated for the current fiscal year. That’s what we reported in our COFAR Blog post on February 2.

But according to the nonpartisan Massachusetts Budget and Policy Center (MBPC), which tracks the state budget, Baker’s real proposed funding for the provider residential line item is $1.44 billion – an amount $36.4 million higher than the number reported on Mass.gov. The real increase being proposed by Baker is $157 million, or 12.2%.

The reason for the higher funding amount, according to the MBPC, is a proposed, but unreported transfer by the administration of $36.4 million to the provider residential line item from another DDS line item — the Turning-22 account (line item 5920-5000).

The provider residential line item is one of five DDS accounts to which the administration has proposed transferring a total of $55.4 million from the Turning-22 account. Turning-22 funds programs for persons entering the DDS system at the age of 22.

The Mass.gov site lists proposed Fiscal 22 funding for the Turning-22 account of $79.9 million, which would be an increase over the current year of $54.9 million, or 219%. But as a result of the line-item transfers, rather than providing an increase of $54.9 million to the Turning-22 line item, the governor’s FY 22 budget would actually cut the Turning-22 line item by $877,900, according to the MBPC.

It’s not clear to us why the administration has proposed the transfers among the DDS accounts, and it remains to be seen whether the House Ways & Means Committee, which is now considering the governor’s FY22 budget, will adopt the  transfers.

It’s also not clear that the administration is intentionally trying to mislead Mass.gov website users in failing to include the amounts transferred among the line items. Nevertheless, the misleading reporting is worrisome to us for a number of reasons.

One reason is that we have long been concerned that the provider residential line item has been steadily increased by successive administrations and by the Legislature at the expense of state-run programs and other accounts. It now appears to be getting an even larger increase than is being reported publicly.

We contacted the MBPC earlier this week after noticing several discrepancies between the DDS line item numbers on he Mass.gov site and the numbers that can be accessed via the MBPC’s online “Budget Browser.”

The Budget Browser is a database of state budget line item amounts since Fiscal 2001, and it provides additional numbers adjusted for inflation.

An MBPC analyst confirmed the DDS line-item discrepancies, and explained the transfer situation to us. The MBPC received a list of the transfers from the administration and forwarded the list to us. The analyst said the transfers themselves are an internal accounting process used in comparing budget numbers over multiple years. If that’s the case, it is still not clear to us why those adjusted numbers are not reported on Mass.gov.

The transfers are displayed in the chart below, along with the governor’s DDS budget amounts as reported on Mass.gov, and the adjusted amounts available from the MBPC via its Budget Browser.

Governor’s budget overstates proposed cut to DDS Day and Transportation accounts

In addition to the proposed transfer of funding to the provider residential line item, Baker has proposed a transfer of $9.6 million from Turning-22 to the Community Day and Work line item.

Based on the Mass.gov site, it appears Baker proposed an overall cut to the Community Day line item of $36.6 million. But due to the transfer from the Turning-22 account, the governor’s proposed cut to the Community Day account would actually be $25 million. That is still a concerning cut, but the transfer would make that cut smaller than it appears on the Mass.gov site.

Baker has proposed additional transfers from the Turning-22 account to the DDS Transportation line item ($4.7 million); Autism Omnibus line item ($4 million), and Respite and Family Services ($613,000).

No transfers proposed into state-funded program line items

Baker has proposed zero transfers to state-run accounts such as the state-operated group homes and developmental centers.  As we reported, Baker’s FY 22 budget would shortchange state-operated group homes and developmental centers.

The state-operated group home line item would be cut by $898,600 under the governor’s budget, when adjusted for inflation. The developmental center line item would, as usual, be cut — this time by $2.1 million.

As we’ve previously noted, the major increases in funding to the provider-based line item since FY12 have enabled the corporate providers in the DDS system to garner sizeable surplus revenues in the intervening years. Those surpluses have enabled the providers to provide yearly increases in executive salaries, but have not translated into living wages for direct-care workers employed by them.

We will submit testimony to the House Ways and Means Committee shortly, raising our concerns about the unreported DDS transfers. We are particularly concerned and have questions about the major transfer of funds out of the Turning-22 account.

We would also urge the administration to correct the Mass.gov budget site to reflect the true line item numbers under Baker’s Fiscal 22 budget proposal.

Fernald may be closed, but it’s still being blamed for the ills of the DDS system

March 3, 2021 17 comments

The Fernald Developmental Center in Waltham has been closed for some seven years.

But activists who oppose all forms of congregate care are still making the former facility a focus of blame for the failures of the state’s care for people with developmental disabilities, even if it means portraying only one side of Fernald’s history.

It appears the latest effort to denigrate Fernald is a scheduled Zoom panel discussion being sponsored on March 10 by the Harvard Law School.

The discussion, titled “Fernald’s Legacy,” will feature Alex Green, a leader of a protest of a holiday light show late last year on the Fernald campus. Green started a petition last fall to stop the light show, contending a festive show on the campus would be “inappropriate, given (Fernald’s) history of human rights abuses and experimentation on children.”

A promotional text for the upcoming Harvard panel discussion refers to the legacy of institutions such as Fernald as “lurid,” and states that society must “critically and publicly interrogate the role they played in shaping today’s services, systems, and attitudes for persons with disabilities.” (my emphasis)

But dismissing the entire legacy and history of Fernald and similar facilities in Massachusetts as lurid may in fact be failing to “critically interrogate” their role.

Fernald was not the same institution by 1993 that it had been in 1970

Fernald’s past is, of course, notorious and controversial. Until the early 1980s, Fernald and other similar state-run centers were indeed horrendous warehouses of abuse and neglect.

In fact, many of COFAR’s members were plaintiffs in Ricci v. Okin, a combined class-action lawsuit first brought in the early 1970s by the late activist Benjamin Ricci over the conditions at the Belchertown State School. The Ricci lawsuit resulted in a consent decree that included the then Belchertown, Fernald, Wrentham, Dever, Monson, and Templeton state schools.

It was due to the dedication of the late U.S. District Court Judge Joseph L. Tauro in overseeing the consent decree that conditions at Fernald and the other state schools finally began to change.

What Green and other activists fail to understand or acknowledge is the revolutionary change that occurred at Fernald and the other institutions as a result of the litigation and Judge Tauro’s intervention. But acknowledging that change would be inconvenient if their purpose is to portray all congregate care, even as it exists today, as uniformly bad.

We have encountered this one-sided viewpoint repeatedly over the years among advocates, politicians, public administrators, and journalists.

That viewpoint betrays a lack of understanding of the history of care of the disabled in Massachusetts and elsewhere around the country. It also shows a lack of understanding of the strict federal standards under Title XIX of the Social Security Act that state-run developmental centers, also known today as Intermediate Care Facilities (ICFs), must meet.

Acknowledging the change that occurred at Fernald is also inconvenient for corporate group home providers to the Department of Developmental Services (DDS) and their lobbyists such as the Arc of Massachusetts. Since Fiscal 2014, when Fernald was closed, the DDS provider residential line item in the Massachusetts budget has risen by $354 million, or 37%, when adjusted for inflation.

That may explain why the Arc signed on to Green’s petition to stop the light show at Fernald, and why the Arc continues to lobby in favor of further closures of congregate-care facilities and further privatization of DDS services.

Our request to be on the Harvard Law School panel was not accepted

On Monday (March 1), I sent a detailed email to Green and to William P. Alford, chair, and Michael Stein, executive director of the Harvard Law School Project on Disability, which is hosting the panel discussion. In the email, I tried to present a balanced view of Fernald’s legacy, and suggested that the panel include at least one person who is aware of Fernald’s full history and understands its real meaning and importance. Tom Frain, our Board president, was willing to fulfill that role on the panel.

Yesterday, I received a 3-sentence response from Professor Stein, saying only that the event is open to the public and that we should “be respectful of the views expressed by our panelists.” He didn’t accept our offer to serve on the panel.  Presumably, the most we would be allowed to do is participate in a question-and-answer session at the end of the discussion. As a result, we will pass on attending what is likely to be a one-sided event.

Stein’s email to me did not acknowledge, much less respond to any of the points I had raised about Fernald’s legacy.

The following are the points I made in my original email to Stein, Alford, and Green:

Judge Tauro attested to the improvements at Fernald

Judge Tauro, who died in November 2018 at the age of 87, had visited Fernald, Belchertown and the other Massachusetts facilities in the early 1970s to observe the conditions first hand. He noted two decades later in his 1993 disengagement order from the consent decree that the legal process had resulted in major capital and staffing improvements to the facilities and a program of community placements.

Those improvements and placements, Judge Tauro wrote, had “taken people with mental retardation from the snake pit, human warehouse environment of two decades ago, to the point where Massachusetts now has a system of care and habilitation that is probably second to none anywhere in the world.”

It is unfortunate that in a media release that Green wrote in November about the protest of the planned light show at Fernald, he appears to have selectively used only the “snake pit” portion of Judge Tauro’s statement in referring to Fernald and the other facilities. That, of course, reversed the meaning of Tauro’s disengagement statement.

Deinstitutionalization has not been a uniform success 

Judge Tauro believed in the importance of a continuum of care for people with intellectual and developmental disabilities (I/DD), and knew that institutions such as Fernald had an important role to play in it. In his 1993 disengagement order, he maintained that facilities such as Fernald should not be closed unless it was certified that each resident would receive equal or better care elsewhere.

As the years went on, the promise of equal or better care in the community was not realized. Deinstitutionalization has turned out to be fraught with problems for people with I/DD just as it has for people with mental illness. Between 2000 and 2014, the VOR, our national affiliate, catalogued hundreds of cases of abuse and neglect in privatized group homes around the country.

In testimony in 2018 to a legislative committee, Nancy Alterio, executive director of the Massachusetts Disabled Persons Protection Commission (DPPC), stated that abuse and neglect of persons in the Department of Developmental Services (DDS) system had increased 30 percent in the previous five years, and had reached epidemic proportions.

Alterio’s testimony came long after the State of Massachusetts had begun to rely primarily on privatized, community-based group homes for residential care of persons with I/DD, and long after the state had phased out and closed all but two state-run ICFs comparable to Fernald.

Our own analysis of more than 14,000 allegations of abuse made to the DPPC showed that the rates of substantiated abuse and neglect per client in those two remaining ICFs — the Wrentham Developmental Center and the Hogan Regional Center — were practically zero between Fiscal 2010 and 2019.

Yet many advocates for corporate providers, such as the Arc of Massachusetts, have pushed for decades for complete deinstitutionalization and for additional privatization of services for people with I/DD. They have been joined by administrations at the state and national levels, which have continually made state-run care and services targets for closure and outsourcing to contracted providers.

Since 2009, the U.S. Justice Department has filed, joined, or participated in lawsuits around the country to close ICFs regardless of whether the residents or their families or guardians wanted to close the facilities they were living in or not.

Fernald’s opponents have misinterpreted the landmark Olmstead v. L.C. Supreme Court decision

Those advocates of deinstitutionalization and privatization have consistently misinterpreted the 1999 Olmstead v. L.C. U.S. Supreme Court decision, which held that institutional care is appropriate for those who desire it and whose clinicians recommend it.

The late Justice Ruth Bader Ginsburg wrote the majority opinion in Olmstead, which has been characterized as holding only that unjustified isolation in institutions is “discrimination based on disability.” But that statement is only half the holding of Olmstead.

There was another major element of Justice Ginsburg’s Olmstead decision that has continued to be disregarded by many who have then gone on to mischaracterize the decision as advocating or requiring the end of institutional care. It didn’t. As the VOR has pointed out, Justice Ginsburg wrote a balanced decision that “supports both the right to an inclusive environment and the right to institutional care, based on the need and desires of the individual.”

Justice Ginsburg’s majority opinion held that:

We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings. . . Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.

As Justice Ginsburg stated, community-based care is an appropriate option for those who desire it, whose clinicians support it, and in cases in which states have the resources to reasonably support care in the community system. Unless all three of those conditions hold, institutional care may well be the appropriate setting.

Fernald’s families fought the closure of Fernald from 2003 through 2014 

In 2004, the plaintiffs in original Ricci v. Okin consent decree litigation asked Judge Tauro to reopen the case, arguing that the then Romney administration was illegally trying to close Fernald, and was thereby violating the terms of Tauro’s disengagement order. Those plaintiffs included families and guardians of Fernald residents, and members of COFAR and other advocacy organizations.

In February 2006, Tauro appointed then U.S. Attorney Michael Sullivan as Court Monitor in the case and asked Sullivan to review the transfers of 49 residents from Fernald since 2003. Sullivan ultimately recommended to the newly installed Patrick administration that Fernald remain open.

In making the recommendation, Sullivan maintained in his report to Tauro that while the level of care there might be able to be duplicated elsewhere, the loss of familiar surroundings and people “could have devastating effects [on the residents] that unravel years of positive, non­abusive behavior.”

Tauro subsequently ruled that the families at Fernald must be given the option of remaining there. But the Patrick administration ignored Sullivan’s recommendation and appealed Tauro’s ruling to the U.S. First Circuit Court of Appeals. The Circuit Court of Appeals overruled Tauro, without giving deference to his expertise in the case; and the Patrick administration proceeded to phase down and close Fernald and later three other ICFs of the six remaining in the state.

By 2014, the year Fernald was closed, some 14 families were still fighting legal and administrative battles to keep the facility open for their loved ones because they believed the care there was better than in the community-based system.

Those families came in for relentless media criticism and blame from lobbyists for corporate providers, who were seeking to close Fernald and the remaining state-run centers, and to garner the lucrative state contracts that would result from it.

The incestuous nature of the privatized system

The closures of ICFs around the country and the rise of the privatized system of care have provided enormous financial windfalls for politically connected corporate contractors. Their executives have garnered huge increases in their personal compensation, but have frequently neglected to pass through the ever higher levels of state funding to direct-care workers. That is one of the reasons for the epidemic of abuse and neglect in the corporate provider-based system of care.

In 2015, we calculated that more than 600 executives employed by corporate human service providers in Massachusetts received some $100 million per year in salaries and other compensation. By our calculations, state taxpayers were on the hook each year for up to $85 million of that total compensation.

As noted, the line item in the Massachusetts state budget for DDS-funded residential providers has been boosted by hundreds of millions of dollars since Fernald’s closure. Yet, as Massachusetts State Auditor Suzanne Bump’s office reported in 2019, while that boost in state funding resulted in surplus revenues for the providers, those additional revenues led to only minimal increases in wages for direct-care workers.

Administrations mistakenly believe closing ICFs will save money

Much of the justification for, and reasoning behind, closing developmental centers has been based on the fact that providers pay lower wages than do public agencies to direct-care workers. Successive administrations in Massachusetts have also sought to operate the ICFs as inefficiently as possible in order to make them appear as expensive as possible, thereby justifying their closure.

In 2014, the Fernald Working Group, a coalition of local organizations, had recommended a cost-effective approach to care in that setting. Their proposal was that the Fernald Center be downsized and converted to group homes on a portion of the campus while the remainder of the campus was opened to development, open space, and other uses.  Similar proposals had been made over the years by the former Fernald League and COFAR.

But the then Romney and subsequent Patrick administrations were interested only in one thing — closing Fernald and three other ICFs 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.

That there isn’t necessarily a long-term fiscal 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.

In a law journal article, Samuel Bagenstos, a former top litigator in the Justice Department’s Civil Rights Division, acknowledged 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.”

Today, as noted, two ICFs remain in Massachusetts – the Wrentham Developmental Center (WDC) and the Hogan Regional Center in Danvers. We rarely, if ever, hear that families or guardians are unsatisfied with the care there.

Mary Ann Ulevich, a COFAR member and a member of the Wrentham Board of Trustees and of the Wrentham Family Association, wrote to DDS Commissioner Jane Ryder in November 2019 in praise of the care her cousin, Tom Doherty, had received at WDC. Tom had died on October 24 at the age of 68. Ms. Ulevich wrote:

I just want you to know how proud you can be of the work carried out at WDC. I know that the philosophy of care for those with intellectual disability is to provide support to remain in their community with their families, with guidance and services. I fully support this contemporary approach, but acknowledge that there are many who because of their history and challenges, and/or because of the progression of their needs combined with diminished family and community resources, can and do thrive in facility-based care.

Here are additional accounts of the value that families put today on the care at WDC.

Apparently, if we keep blaming Fernald and other congregate-care facilities for all of the dysfunctionality of the DDS system, we will not have to admit that the problems with abuse and neglect and financial mismanagement in the system primarily lie elsewhere.

Setting the record straight about Ruth Bader Ginsburg’s historic contribution to the rights of the disabled

September 30, 2020 6 comments

As the nation celebrates the life and judicial legacy of the late U.S. Supreme Court Justice Ruth Bader Ginsburg, we would like to recognize and set the record straight about her major contribution in one particularly vital case to the rights of persons with cognitive disabilities.

Ginsburg wrote the majority opinion in Olmstead v. L.C., which has been characterized as the most important civil rights decision for people with disabilities in our country’s history. It may have certainly been that, but not, as is usually claimed, because it held that “unjustified isolation (in institutions) is properly regarded as discrimination based on disability.”

That statement is only half the holding of Olmstead. There was another major element of Ginsburg’s Olmstead decision that has continued to be disregarded by many who have then gone on to mischaracterize the decision as advocating or requiring the end of institutional care. It didn’t.

As our national affiliate, the VOR, has pointed out, Ginsburg wrote a balanced decision that “supports both the right to an inclusive environment and the right to institutional care, based on the need and desires of the individual.”

In other words, the greatness of Ginsburg’s contribution to the rights of the disabled was that her decision was all about choice. It provides a choice between community-based care and institutional care to persons with cognitive disabilities.

In announcing the Olmstead decision on June 22, 1999, Ginsburg stated that that the answer was “a qualified yes” to the question whether the Americans with Disabilities Act (ADA) “…may sometimes require a state to place persons with mental disabilities in community settings rather than in state institutions.”

The key word here was “qualified.” Ginsburg’s majority opinion held:

We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings. . . Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.

As Ginsburg stated, community-based care is an appropriate option for those who desire it, whose clinicians support it, and in cases in which states have the resources to reasonably support care in the community system. Unless all three of those conditions hold, institutional care may well be the appropriate setting.

The majority decision included a reference to amicus brief submitted by VOR, which stated that:

Each disabled person is entitled to treatment in the most integrated setting possible for that person – recognizing that, on a case-by-case basis, that setting may be in an institution.

Decision has been misinterpreted

Despite those clear statements, Olmstead has continuously been misinterpreted by policy makers, administrators, and even governmental agencies as requiring the closure of all remaining state-run congregate care facilities in the country and privatizing all remaining residential care. What these advocates have done is to take the choice out of it.

The U.S. Department of Justice’s Civil Rights Division, for instance, has mistitled its technical assistance website, “Olmstead: Community Integration for Everyone.” (my emphasis). That is simply not true. Olmstead clearly implied that community integration isn’t for everyone.

In line with this misinterpretation, the DoJ has for years filed lawsuits around the country to close state-run care facilities, whether the residents and their families and guardians have opposed those closures or not. This has caused “human harm, including death and financial and emotional hardship,” according to information compiled by VOR.

While the DoJ has not filed such a suit against the State of Massachusetts, that may be because the state closed four out of six developmental centers that were in operation in the state as of 2014.  Olmstead, however, has been used as a justification in Massachusetts and other states for closing sheltered workshops, as Massachusetts did as of 2016 over the objections of many of the participants and their families.

Those acts and outcomes are not consistent with the plain language of Olmstead regarding the importance of the individual’s personal choice. Nevertheless, facility closure advocates consistently cite Olmstead as justifying their actions.

Community-based care was appropriate for original plaintiffs

The Olmstead lawsuit was brought on behalf of Lois Curtis and Elaine Wilson of Georgia, who both had diagnoses of mental health conditions and intellectual disabilities, according to a website created by attorneys with the Atlanta Legal Aid Society, who represented the women in the case.

Curtis and Wilson had asked the state of Georgia to help them get treatment in the community so that they would not have to live in a mental hospital.  According to the Atlanta attorneys, the doctors who treated Curtis and Wilson agreed that they were capable of living in the community with appropriate supports. However, both women had been waiting for years for their community-based supports to be established.

Thus, the original plaintiffs in the Olmstead case satisfied at least two of the three conditions that Ginsburg set for community-based care in the decision: their clinicians deemed community-based care appropriate for them, and they desired it. But Ginsburg recognized that might not be true of everyone in institutional care.

Olmstead wrongly used to justify continuing privatization of DDS services

The Olmstead decision is based on regulations in the ADA that stipulate that public entities should provide services and programs in “the most integrated setting appropriate to the needs” of persons with disabilities.

In Massachusetts, administrations have long contended that the most integrated settings exist in the form of community-based group homes, the majority of which are run by corporate providers that receive state funding.

The problem with this view is that there have been countless examples of group homes that offer residents little opportunity for community integration. Yet the argument that group homes are more integrated than developmental centers is ingrained among policy makers, journalists, and others. This has made it accepted wisdom that all state-run congregate care facilities should be closed — an outcome that will ultimately lead to complete privatization of care.

That appears to be the goal of federal agencies such as the Centers for Medicare and Medicaid Services (CMS), which has issued regulations and provided billions of dollars in grants intended to boost the privatized group home system around the country.

On September 23, for instance, CMS announced the availability of up to $165 million in supplemental funding to states currently operating Money Follows the Person (MFP) demonstration programs. As a CMS press release put it, this funding “will help state Medicaid programs jump-start efforts to transition individuals with disabilities and older adults from institutions and nursing facilities to home and community-based settings of their choosing.”

But while this outcome is termed a choice, the closure of the institutions will actually eliminate the choice that Ginsburg articulated in Olmstead. The VOR amicus brief, as noted, stated that on a case-by-case basis, the most integrated setting may be an institution.

The Disability Integration Act of 2019 would further erode Olmstead choice

Unfortunately, the notion that community-based care is the only appropriate option for people with cognitive disabilities is so ingrained and pervasive that the entire Massachusetts congressional delegation signed onto a bill last year, which would encourage further unchecked privatization of human services, diminished oversight, and reduced standards of care across the country.

The bill, known as the federal Disability Integration Act of 2019 (HR.555 and S.117), would potentially threaten the Wrentham Developmental and Hogan Regional centers in Massachusetts, the state’s only two remaining residential facilities for the developmentally disabled that meet federal Intermediate Care Facility (ICF) standards.

The legislation calls explicitly for the the “transition of individuals with all types of disabilities at all ages out of institutions and into the most integrated setting…” (emphasis added). As such, the bill does not comply with the choice provision in Olmstead.

We have contacted the members of the members of the state’s congressional delegation to urge them to support a change in the language of the bill to respect the choice of individuals, families, and guardians either to get into or to remain in congregate care facilities.

Given that the two versions noted above of this bill are still pending in House and Senate committees in Congress, we plan to remind the members of the Massachusetts delegation of the legacy and words of Ruth Bader Ginsburg.

In 1999, Justice Ginsburg endorsed the idea of a continuum of care for the most vulnerable members of our society. Her decision and message were models of inclusivity. Now at the time of her passing, we think it is important to remember and reflect on that.

ACLU and SEIU surprisingly and confusingly gang up on congregate care for the developmentally disabled during COVID crisis

July 13, 2020 3 comments

The American Civil Liberties Union (ACLU) and the Service Employees International Union (SEIU) are usually strong advocates of accountability and transparency in government.

That’s why it is surprising that both of those organizations appear to be using the coronavirus pandemic to further a longstanding agenda, which we never knew they shared, to privatize services to people with intellectual and developmental disabilities.

It’s particularly surprising that the SEIU, a human services employee union that represents caregivers in the state’s two remaining developmental centers, would be on board with closing down state-run care facilities.

In a petition filed June 23 with the U.S. Department of Health and Human Services (HHS), the ACLU, SEIU, and a number of other advocacy organizations appear to start off on the right track in criticizing the federal government for its mismanaged response to the pandemic.

The petition identifies nursing homes, Intermediate Care Facilities for the developmentally disabled (ICFs), and group homes as sites of large numbers of COVID-19 infections and deaths that could have been prevented with better guidance for infection control, more testing, and better patient and worker protections.

But the petition then goes on to make a number of, at times, poorly conceived and even confusing claims and recommendations that ultimately appear intended to support a privatized care agenda.

At least some of the confusion centers around group homes, which the petition lumps together with ICFs as sources of “congregate care.”

The petition suggests that among the causes of the infections and deaths is the federal government’s failure “to divert people from entering nursing homes or other congregate settings” or to increase discharges from those settings “to the community.”

The argument the petition makes is that reducing the population in all of those facilities would “make social distancing possible.”

The petition defines congregate settings as including ICFs, psychiatric facilities, and group homes. Yet, group homes are considered part of the community-based system of care in Massachusetts and other states.  As a result, it isn’t clear what the ACLU and SEIU mean in stating that people living in group homes would be among those in congregate settings who should move “to the community.”

The petition, moreover, calls for reducing the population of nursing homes and congregate settings by 50 percent. Should HHS neglect to act within three weeks to enact that and other suggested measures, the groups will sue, the petition states.

It is unclear whether the ACLU and SEIU mean that nursing homes, ICFs, and group homes should all be emptied of 50 percent of their residents, or where those residents would then go.

VOR, COFAR’s national affiliate, issued a statement sharply critical of the petition, maintaining that:

…the ACLU has cast its net too wide, and falsely claimed to represent the interests of everyone receiving federally funded services who is classified as elderly or who has intellectual and developmental disabilities. In doing so, it apparently assumes that all such persons look and feel alike and need the same supports and level of care.

Further confusion over the HCBS waiver

Adding to the confusion over group homes is language in the ACLU/SEIU petition calling on HHS to “provide incentives to states to redesign their Medicaid programs to expand Home and Community Based Services (HCBS) and other community-based services and supports” with the goal of the 50 percent reduction in the population in congregate settings.

Once again, that language is confusing in that group homes in Massachusetts and other states have long been recipients of federal funding under an HCBS waiver of Medicaid regulations governing ICFs. In asking for an expansion of Medicaid funding under the HCBS waiver, is the petition suggesting that the money go toward care in a setting other than group homes?

ACLU/SEIU petition misreads the Olmstead Supreme Court decision

The ACLU/SEIU petition further misreads the landmark Olmstead v. L.C. U.S. Supreme Court decision, which paved the way for expansion of privatized care. Although the 1999 decision held that community-based care should be made available for those who desire it, it nevertheless recognized the role played by institutional care for those who can’t function under community-based care.

The Olmstead ruling stated that the Americans with Disabilities Act (ADA) “does not condone or require removing individuals from institutional settings when they are unable to benefit from, or do not desire, a community-based setting.”

We have asked the SEIU’s Massachusetts affiliate, Local 509, whether it is in support of the ACLU/SEIU petition. We have not heard back yet, but we hope they are in a position to disavow it.

There is a lot to be concerned about regarding the efforts of both the federal government and the state government here in Massachusetts to protect persons with intellectual and developmental disabilities from the virus. We’ve raised a lot of those concerns over the past few months.

At the same time, and for that reason, we don’t think it is appropriate for any organization to use the pandemic to support an anti-institutional agenda.

Federal deinstitutionalization bill would lower human services care standards

May 31, 2019 6 comments

Unfortunately, the entire Massachusetts congressional delegation has signed onto a newly filed bill in Washington, which, as currently written, would encourage further unchecked privatization of human services, diminished oversight, and reduced standards of care across the country.

In Massachusetts, the bill, known as the federal Disability Integration Act of 2019 (HR.555 and S.117), would threaten the Wrentham Developmental and Hogan Regional centers, the state’s only two remaining residential facilities for the developmentally disabled that meet federal Intermediate Care Facility (ICF) standards.

Moreover, we think the bill does not comply with the law under the 1999 U.S. Supreme Court decision in Olmstead v. L.C., which recognized the value and legitimacy of institutional or congregate care for those who want and need it.

HR.555 (and the Senate version, S.117) calls explicitly for the the “transition of individuals with all types of disabilities at all ages out of institutions and into the most integrated setting…” (emphasis added).  The legislation specifies that the federal government would provide funding for technical assistance to states “to prevent or eliminate institutionalization” of persons with developmental disabilities.

This language does not comport with Olmstead, which held that that the Americans with Disabilities Act (ADA) does not condone or require removing individuals from institutional settings when they are unable to benefit from a community-based setting. In addition, the ADA does not require the imposition of community-based treatment on patients who do not desire it.

At the very least, the language in this bill should be changed to respect the choice of individuals, families, and guardians, either to apply to get into, or to remain in congregate-level care facilities.

So far, we have made our concerns known to the office of Senator Elizabeth Warren, and have requested that Warren reconsider her co-sponsorship of the bill. A staff member said the office will look into our concerns and will convey them to the office of Senate Minority Leader Charles Schumer, the lead sponsor of the bill.

We plan to contact the office of Senator Edward Markey and other members of the Massachusetts delegation as well.

Failure to acknowledge problems with deinstitutionalization

HR.555 perpetuates the myth of institutions as providing “segregated” care. It fails to acknowledge the relentless pursuit of deinstitutionalization in recent decades, which has caused “human harm, including death and financial and emotional hardship.”

What the bill particularly fails to take into account are the major upgrades in care and standards in congregate-care facilities since the 1970s, largely as a result of federal lawsuits brought in Massachusetts and other states.

The irony is that while those lawsuits also led to the introduction and growth of privatized, community-based care throughout the country, poor oversight and low pay and training of staff in the privatized group-home system has recreated many of the warehouse-like characteristics of large institutions prior to the 1980s.

The bill falsely purports to encourage choice

HR.555 states that its purpose is “to clarify that every individual who is eligible for long-term (human) services and supports has a federally protected right to be meaningfully integrated into that individual’s community…” in order to receive those services and supports.

But the bill states that a group home or other facility can only be considered community-based if it has four or fewer unrelated residents. That is an unworkable and actually choice-limiting proposition that is almost as radical as the position of the National Council on Disability that an institution is a facility with four or more people who did not choose to live together.

So, while the bill purports to be in favor of choice, the only choice it recognizes as valid is a community-based setting; and that means a residential setting with four or fewer residents.

But the Supreme Court held in Olmstead that congregate care is appropriate for some persons with developmental disabilities. In Massachusetts, we have repeatedly heard from families and guardians who are satisfied with the high level of care delivered in the Wrentham and Hogan centers.

The people remaining at Wrentham and Hogan are more profoundly disabled and have more serious medical issues on average than in other DDS settings. These people need the intensive care that is regulated by ICF-level standards. HR.555 does not recognize the distinctions or the different levels of care needed by different individuals.

In fact, the real purpose of the bill, in our view, is to eliminate the choice of ICF-level care, which is based on strict federal standards for staffing, in particular.

The political impetus to close all remaining congregate care settings comes, as it has for years, from state-funded, corporate human services providers, who have a conflict of interest because they stand to gain additional state contracts as state-run facilities are closed and their functions are privatized.

Massachusetts, as do most states, allows the providers to operate under a waiver of the ICF regulations, which permits lower standards of care for community-based services. Even so, the cost of that care is oustripping the ability of states to pay for it.

The cost is not identified

HR.555 would require states to offer community-based services immediately to all persons needing such services, and those jurisdictions would not be allowed to impose cost caps or use waiting lists. The bill, however, does not identify what the cost of such a requirement would be or where the funding would come from.

The VOR, which advocates nationally for persons with developmental disabilities, calls the bill “clearly unaffordable.” Simply encouraging, funding, or requiring the transfers of more people out of institutions into community-based care will only exacerbate problems in the latter system.

To the extent that the bill recognizes the cost of care, it attempts wrongly to place the blame on institutions. It refers to “billions of dollars in unnecessary spending related to perpetuating dependency and unnecessary confinement.”

This statement, however, does not recognize the high cost of executive salaries and of mismanagement in the community-based system. In Massachusetts, the cost of institutional care is less than 10% of the cost of privatized, community-based care.

The bill, however, does appear at least to recognize that there are costs in providing community-based care because the bill would require states and providers to review their funding sources and analyze “how those funding sources could be organized into a fair, coherent system that affords individuals reasonable and timely access to community-based long-term services and supports.”

Such a review sounds reasonable, and we think it should be done before legislation is enacted that would encourage further deinstitutionalization. As noted, the deinstitutionalization required by this bill would place a significant financial strain on the community-based care system for which no additional funding has been identified.

We would suggest that people contact the members of the Massachusetts congressional delegation, whose contact information can be found at this site: https://lwvma.org/your-government/federal/.

We hope all of the members of the delegation will reconsider their support of HR.555 and S.117.

DDS providers pushing Gov. Baker to phase out state-run care

February 13, 2017 3 comments

The major lobbying organizations for corporate providers to the Department of Developmental Services appear to be pushing the Baker administration and the Legislature to privatize more and more state-run care.

And the administration and Legislature have so far appeared to be more than willing to accommodate the providers.

Governor Baker’s Fiscal Year 2018 budget, which he submitted to the Legislature last month, further widens a spending gap between privatized and state-run programs within the Department of Developmental Services. In doing so, it appears largely to satisfy budget requests from both the Arc of Massachusetts and the Association of Developmental Disabilities Providers (ADDP).

In fact, the increase proposed by the governor in funding for privatized group homes is $26 million more than the $20.7 million increase the Arc had sought. The ADDP may be a little disappointed only because that organization had asked for a $176 million increase in that account!

The chart below shows the widening gap in funding for key privatized and state-run DDS services over the past several years, adjusted for inflation. Under this trend, funding for corporate-run, residential group homes, in particular, has risen steeply while funding for state-operated group homes and developmental centers continues to be stagnant or cut.

 dds-budget-chart2-fy-12-18

For Fiscal 2018, the Arc requested a $20.7 million increase in funding for privatized group homes (line item 5920-2000), and the governor obliged with an even higher $59.9 million, or 5.4 percent, increase, as noted.*  The ADDP, as noted, wanted a $176 million increase in that line item.

In the privatized community day line item (5920-2025, not shown on the chart), both the Arc and ADDP asked for a $40.2 million increase, and the governor responded with a proposed $13.6 million increase.

At the same time, both the Arc budget request for Fiscal 2018 and the  ADDP request effectively asked for zero increases in funding for the state-run DDS accounts. Those include accounts funding state-operated group homes, developmental centers, and departmental service coordinators. (The column labeled “Request” in the linked Arc budget document is left blank for those state-run program line items. The ADDP budget request simply doesn’t include those line items.)

The governor appears to have more than obliged the provider organizations regarding those state-run accounts as well. His Fiscal 2018 budget proposes a $1.8 million cut in the state-operated group home account (5920-2010). This amounts to a $6.9 million cut when adjusted for inflation.

In addition, the governor is proposing a  $2.4 million, or 2.2%, cut in the state-run developmental centers line item. (5930-1000). That’s a $4.9 million cut when adjusted for inflation.

And the governor is proposing a cut of $96,000 in the DDS administration account (5911-1003). That is a $1.7 million cut when adjusted for inflation, and means a likely cut in funding for critically important DDS service coordinators, whose salaries are funded under the administrative account.

It’s well known that the Arc and the ADDP oppose developmental centers because those two organizations oppose congregate care for the developmentally disabled and support only care in group homes or smaller settings. What may not be as well known is that the Arc and ADDP appear to have no interest in more funding for service coordinators or state-run group homes, in particular.

Late last month, Baker submitted his proposed Fiscal 2018 budget to the Legislature’s House Ways and Means Committee. In a letter to Representative Brian Dempsey, the chair of the budget panel, COFAR requested that, at the very least, the committee approve a plan to redirect some of the governor’s proposed increase in the corporate residential account to the state-operated group home, facilities, and service coordinator accounts.

(We would note that we have been urging this kind of redirection of funding for the past two years, and neither the governor’s office nor the Legislature are listening.)

Service coordinators

Service coordinators are DDS employees who help ensure that clients throughout the DDS system receive the services to which they are entitled under their care plans. In recent years, funding for service coordinator salaries has failed to keep up with their growing caseloads.

A reason for the Arc’s apparent disinterest in service coordinators may be that the organization has long promoted privatized “support brokers,” in which the Arc is financially invested.

The job descriptions of the Arc support brokers and the DDS service coordinators appear to be quite similar. The Arc notes on its website that “consumers or families hire a support broker to help them find appropriate services and supports to thrive in their community.”

The job description of DDS service coordinators states that they are responsible for  “arranging and organizing DDS-funded and generic support services in response to individual’s needs.”

COFAR Executive Director Colleen M. Lutkevich terms the DDS service coordinators “the eyes and ears that make sure that the providers who report to DDS are doing their best for the residents in a large, confusing system. Without them, the provider agencies have total control, and families do not even have a phone number or a name to call outside the provider they are dealing with.”

Underfunding of state-operated group homes

In addition to provider-run group homes, DDS maintains a network of state-run group homes that are staffed by departmental employees. State workers receive better training on average than do workers in corporate provider-run residences, and have lower turnover and higher pay and benefits.

State-operated group homes provide a critically important alternative to the largely privatized residential care system that DDS oversees. But we have found that DDS routinely fails to offer state-operated homes as an option for people waiting for residential care, and instead directs those people only to openings in the privatized residences.

To be clear, we do not object to a highlight of Governor Baker’s budget — his proposed $16.7 million increase in the  DDS Turning 22 account, which would amount to a 222% increase in that account over the current year appropriation.  Turning 22 funds services for a growing number of developmentally disabled persons who leave special education programs at the age of 22 and become eligible for adult services from DDS. This account has been historically underfunded.

But our concern is that as they enter the DDS system, those 22-year-olds will be placed almost exclusively in privatized programs. An important choice is being taken away from them and their families.

As we noted in our letter to the House Ways and Means chair, the pattern of privatization in Massachusetts state government has become almost permanently established even though the benefits of privatization are highly debatable.  Many questions have been raised about the privatization of prisons  and the privatization of education in Massachusetts and elsewhere around the country.

The privatization of human services may be the biggest prize of all for government-funded contractors.  We need to preserve what’s left of state-run services.

(*The $59.9 million figure for the governor’s proposed increase in the corporate provider line item is based on numbers provided by the nonpartisan Massachusetts Budget and Policy Center. The Arc’s budget document claims the governor’s requested increase was $46.7 million.)

Baker administration concedes some congregate care for the developmentally disabled is good, but will still largely prohibit it

August 4, 2016 Leave a comment

In responses to comments made to a federally required plan for community-based care of the developmentally disabled, the Baker administration is conceding that not all congregate care is bad or should be banned.

Yet, the administration’s draft Statewide Transition Plan (STP) still appears to prohibit or restrict most new group homes from housing more than five residents; and it would apparently restrict funding for most other congregate settings, such as farm-based residential programs.  The administration is currently asking for further comments on the draft STP.

The STP is a requirement of the federal Centers for Medicare and Medicaid Services (CMS), which issued a new regulation in 2014 governing community-based care receiving Medicaid funding. The CMS regulation is intended to reduce reliance on congregate care, but Massachusetts originally appeared to go even further than the CMS regulation in banning congregate care almost entirely.

Along with hundreds of people and other organizations, COFAR submitted comments in late 2014 to the original draft of the STP.  It appears that like us, most of the commenters to that original plan were concerned that the state was going too far in banning virtually all possible forms of congregate care.

As we noted in our comments to the administration in 2014, the Department of Developmental Services appeared to be proposing a ban on new and potentially existing residential settings such as farmsteads, residential schools or settings that are part of residential schools, settings “that congregate a large number of people with disabilities for significant shared programming and staff,” and even new group homes with more than five residents.   Not even CMS was advocating a complete ban on all of those residential options.

Now, after having received those critical comments, the state seems to be willing to continue to fund some forms of congregate care.

In its response to the comments, the Baker administration made the following statement:

The state acknowledges that CMS… has indicated that ‘it is not the intent of this rule (CMS’s 2014 regulation) to prohibit congregate settings from being considered home and community-based settings.’ The …characteristics of any setting (location, geography, physical characteristic and size) are not necessarily determinative of whether a provider can achieve compliance… (my emphasis).

Despite that apparent concession, the Baker administration’s STP states that DDS has determined that 14 corporate providers operating 57 group home sites are not complying with the new CMS regulation.  This lack of compliance is because these residences apparently have “institutional qualities,” either because they house more than five residents or not enough services are provided by community-based providers.

The STP also states that some of these homes may have provided insufficient staff training in “person-centered planning.”  (We have voiced concerns that while person-centered planning is touted as giving developmentally disabled individuals more control over the services they receive and how they pay for them, the process appears to put control over an individual’s funds into the hands of private companies.)

By the way, the administration stated in its responses to the STP comments that the state’s Building Code limits group home capacity to five residents.  Our reading of the applicable Building Code regulation, however, is that it does not set a 5-person limit on all group homes, but rather specifies only that DDS group homes with five residents or less must be classified as single-family or two-family homes (see amendments to 780 CMR. 310.2).

These are, moreover, group homes, and not developmental centers, that DDS has identified as being too institutional.  This raises a concern for us that the federal government and the state are pushing for ever smaller and more dispersed residential settings — a process that diverts more and more taxpayer money appropriated for the developmentally disabled into a grossly unregulated corporate-run service system.

While it appears under the STP as though DDS will allow these 14 providers some leeway in complying with the provisions in the plan, the providers will have to make a range of changes, including potentially relocating their residents to smaller residences.  The STP indicated that this may result in an unspecified additional cost to the state.

The STP also noted that the Association of Developmental Disabilities Providers (ADDP), an influential lobbying organization for state-funded DDS providers, will be in charge of providing assistance to the providers in complying with the plan.

Anti-eviction agreements

One piece of potential good news is that the administration’s STP states that DDS will require providers to sign contractual agreements with residents of group homes that prevents arbitrary and capricious evictions.  This is apparently another CMS requirement.  This could address one of the key problems we’ve identified with provider-operated group homes, which is that they can currently evict residents with minimal notice, particularly in cases in which guardians or other advocates are seen as being pushy or meddlesome.

A portion of the STP also deals with non-residential care.  What stood out was that DDS found that 170 community-based day programs operated by 98 providers did not meet CMS standards due to inadequate daily activities, staffing, and funding.

Administration still steeped in community-first ideology

Despite the apparent softening of its anti-congregate-care position, the administration’s STP still appears to be ideologically opposed to anything not considered sufficiently community-integrated, and therefore too institutional. In its response to some of the comments to the STP, the administration stated that it is its belief that:

all individuals, regardless of their level of impairment, can benefit from integration and access to the community. (my emphasis)

The administration made this statement after noting that it recognized that “…individuals with significant disabilities live in some settings that presumptively do not satisfy the (CMS) community regulation.”  The administration stated that it is not its intent “to force individuals to move from settings or to take away needed services and supports.”  But that is exactly what DDS did when it closed or downsized four developmental centers in Massachusetts, starting in 2008.

So, in effect, while the administration says in the STP that it recognizes that some individuals live in non-community-based settings, it still maintains that all developmentally disabled individuals, regardless of their level of disability, could benefit from being moved to the community system.  It is a community system, however, in which at least some of the services and supports available in “institutional” settings would most probably be taken away.

On the one hand, the administration acknowledges that it is not the size of a care setting that determines whether it is institutional or not, but rather the services provided and the commitment of the staff.  Yet the administration consistently overlooks the fact that just because a care setting is small, that doesn’t guarantee it will be integrated into the community.

In a perceptive post, Jill Escher, president of The Autism Society San Francisco Bay Area, notes that the real purpose of the new CMS regulation is not to eliminate institutional care, but rather “to put the brakes on the creation of new residences and programs that cater specifically to adults with autism and other intellectual and developmental disabilities.”

In other words, programs for the developmentally disabled cost money, and the CMS is looking to save money by simply eliminating those services.

Here’s Escher’s very apt description of the impact of the CMS regulation and the transition plans of states like Massachusetts:

Though the (CMS) rules talk of “person-centered” and “outcome-oriented” services, where individuals are not “isolated” and are free from coercion and restraint, in Orwellian doublespeak fashion, civil rights and liberation is not the true endgame here. The overwhelming goal is to restrict out-of-home options.

In practice the rules mean if you’re sitting at your parents’ home doing nothing, or in your own apartment without on-site staff, that’s “community integration.” Meanwhile if you prefer a well staffed adult autism program or housing complex, where you are cared for and safe, engaged in the community, and in the company of your friends who may have similar disabilities, your choice is ironically deemed “isolating” by bureaucrats. And therefore subject to the CMS axe.

Jill Barker, who writes The DD News Blog, adds:

Congregate care, providing services to people with disabilities in group settings, is one of many practical solutions to the need for long-term care. It allows for the sharing of resources and lessening of feelings of isolation. It should not be ruled out as an option, although that appears to be the intent of many advocacy organizations.

In my opinion, there is also a quiet war on families who are offered no other alternative but to keep their adult child with DD at home with services that may not be adequate to provide the family with the relief they need and a good quality of life for their disabled family member for the long term.

Limited federal IG probe faults state’s reporting on group home abuse in MA

July 20, 2016 2 comments

In one of the few investigations of the community-based system of care for the developmentally disabled, the Inspector General for the U.S. Department of Health and Human Services last week disclosed critical shortcomings in the process in Massachusetts for reporting abuse and neglect.

A report issued by the IG found that incidents of abuse and neglect in group homes were not regularly reported to investigators.  The report noted that of a sample of 587 visits by group home residents to hospital emergency rooms, the group homes had failed to report 88 –or 15 percent — of them to the Department of Developmental Services.

In addition, DDS itself and the group homes did not report 58 percent of 175 “critical incidents” to the Disabled Persons Protection Commission, as required by state regulations.  And 29 percent of incident reports sampled by the IG did not contain “action steps” to protect individuals involved from future injury.

COFAR has long maintained that the state’s privatized group home system is inadequately overseen and prone to abuse and neglect due to relatively low levels of pay and training, and high turnover among staff.   Even the providers themselves acknowledge those problems.  Yet the state routinely relicenses  the providers to operate homes even though there are clear gaps in the prevention and reporting of abuse and neglect.

The Massachusetts report is the third report issued by the HHS IG thus far on abuse and neglect in individual states.  Last year, the IG issued a report on New York State; and in May, the agency issued a report on Connecticut.

U.S. Senator Chris Murphy of Connecticut, who originally requested in 2013 that the HHS IG investigate abuse and neglect in group homes around the country, commented this week on the findings, at least concerning Connecticut and Massachusetts.  In a statement issued on Monday, Murphy said he will introduce federal legislation to require reporting of incidents of abuse and neglect, and training of direct care staff in group homes.

Murphy’s office did not respond to a request from COFAR earlier this year for comment on the New York report. As we noted in February, the New York report contained no recommendations and no critical findings, and was only six pages long.

The Massachusetts report, in contrast, was 33 pages long.  Like the Massachusetts report, the Connecticut report, which was issued in May, found numerous failures to report abuse and neglect to state authorities.

Despite its thoroughness in examining the incident reporting process in Massachusetts, we believe even the IG’s Massachusetts report was limited in its scope. We think it could have gone much further in investigating the major problems posed by the privatized residential system.

In requesting the IG investigation, Murphy’s 2013 letter to Daniel Levinson, the HHS IG, emphasized the role of privatization in causing “a race to he bottom in our health care system. Privatization of care may mean lower costs but without the proper oversight and requirements for well-trained staff,” Murphy stated.

In limiting its report primarily to findings of failures to report instances of abuse and neglect, the IG has focused on a small piece of the overall problem.  The larger issue concerns not only the level of abuse and neglect in the privatized system, but the overall adequacy of care that exists in it.

The HHS IG  report did not examine the impact of privatization on the quality of care in the group home system, and did not specify whether the residents whose emergency room visits the IG sampled lived in privatized or state-run group homes.

We have found that the state’s ongoing privatization of residential services has resulted in a corporate, bottom-line approach to care of the disabled. Moreover, DDS has insisted on steering people waiting for residential care to the privatized group home system, all the while failing to provide state-run homes as an option.

The case of Kathleen Murphy is an example.  As we have previously reported, Kathleen’s sister and guardian, Patricia Murphy, and members of her family began trying to move Kathleen from a corporate provider-operated group home to a state-operated residence in 1998.  DDS continually declined to move her, despite a federal law requiring that the Department provide disabled individuals with a choice among all available alternatives for residential care.

Patricia Murphy finally filed a federal lawsuit in 2013, which resulted in the placement of Kathleen in a state-operated residence.  (By way of disclosure, Kathleen Murphy is represented in the case by Tom Frain, who is COFAR’s Board president.)

Patricia Murphy contends that Kathleen suffered nearly 16 years of physical abuse, sexual assaults, emotional torment, and medical neglect in provider-operated group homes.  She says her sister was also grossly over-drugged in those facilities, and her clothing, jewelry and spending money were stolen.

The state-operated residence to which Kathleen was finally placed is “the best thing that ever happened to her,” Patricia said.  She said that since moving to the state-operated group home, Kathleen has lost 45 pounds, is being fed nutritious food, is off all psychotropic drugs, and her blood pressure is under control.

Yet these experiences as reported by families are apparently of little interest to the federal government, in particular, which, like the state, is committed to further privatization of residential services for the developmentally disabled.  While the U.S. Department of Justice has placed a major emphasis in recent years on investigating and closing down state-operated facilities and services for the disabled, there have been few if any comprehensive investigations of the privatized group home system.

Unfortunately, the Massachusetts Legislature has adopted a look-the-other-way attitude regarding these problems.  As far as we know, no legislative committee has scheduled any hearings in recent memory on the problem of abuse and neglect in the DDS system.

Both the Legislature and the Baker administration have continued a policy of boosting funding for further privatization of services while slowly starving the much more responsive state-run group home system of budgetary support.

We hope that the IG report, limited as it was, spurs the Legislature to finally pay attention to the big issues that surround the care of persons with developmental disabilities in Massachusetts. Those issues concern privatization and its impact on abuse, neglect, and the quality of care in general.

Gov. Baker’s FY ’17 budget continues race to the bottom in care of the developmentally disabled

February 2, 2016 8 comments

In his proposed Fiscal 2017 budget, which he filed last week, Governor Baker is continuing to boost funding for privatized care for the developmentally disabled at the expense of state-run care.

This continues a pattern that has crossed party lines — the Patrick administration did the same thing — of reducing both the available choices and the quality of care for people with developmental disabilities.

Privatization of human services reduces the quality of care because it reduces money spent on direct-care staffing.  Direct care workers of corporate providers get lower pay and less benefits than their counterparts in state-run facilities.

Privatization reduces choice in care because it results in the closures of state-run facilities and consequently eliminates them as an option for people who might want that higher level of staffing and care.

Of course, as the linked New York Times article points out, privatizing services doesn’t necessarily result in long-term fiscal savings for state taxpayers.  The money saved in hiring lower-paid workers is usually offset by higher costs such as unemployment insurance and by Medicaid and other public assistance for workers earning low incomes.  We also believe any savings in privatization is also offset by the often inordinately high compensation provided to executives of the corporate providers.

Yet it appears the Baker administration still believes it will save money in using lower-paid direct-care workers.  That seems to be the case with the administration’s proposal to privatize mental health services in southeastern Massachusetts.  In that case, the administration appears to be implicitly backing a reduction in wages to direct-care workers after an initial contract period.

Governor’s FY ’17 DDS budget numbers

Here are some of the key numbers in Baker’s Fiscal 2017 budget proposal for the Department of Developmental Services.  Note: All numbers below are adjusted for inflation using the Mass. Budget and Policy Center’s CPI index numbers.  The CPI numbers show inflation running at about 1.8 percent for Fiscal 2016.

We believe that in order to gauge the level of the administration’s commitment to privatization of services for the developmentally disabled, it’s necessary to compare what has happened and is happening to the corporate provider line item with what happens to other DDS line items.

Here’s how it looks graphically, with more detailed explanation below.

DDS budget chart FY 17

Corporate provider residential line item (5920-2000): This is the main DDS line item supporting privatized services.  It has become by far the largest line item in the DDS budget — funding under this line item exceeded $1 billion for the first time in Fiscal 2015.

The governor’s Fiscal 2017 budget would increase the corporate provider line item by $5.9 million, or 0.5 percent, over current-year funding.  If the governor’s Fiscal 2017 budget is adopted, this line item will have been increased by $309 million, or 38.6 percent, since Fiscal 2012.

Chapter 257 Reserve 1599-6903: This is a reserve fund created to last year to provide even more funding for corporate providers.   The governor’s budget would increase this fund by $5.7 million or 18.6 percent, to $36.2 million.

The following three line items are key indicators of the administration’s commitment to state-run services.

State-run developmental centers budget line item (5930-1000):  The governor’s Fiscal 2017 budget would cut this line item by $3.18 million or 2.8 percent from the current-year appropriation.  If the governor’s proposal for Fiscal 2017 is adopted, this line item will have been cut by $41.6 million, or 27.5 percent, since Fiscal 2012.

That $41.6 million cut reflects the closures since 2008 of three of six remaining developmental centers.

State-operated Residential line item (5920-2010): The governor’s Fiscal 2017 budget would cut this line item by $212,800, or 0.1 percent, from current-year funding.  (In nominal dollars, the governor has proposed a $3.7 million increase in this line item, but it’s a cut when adjusted for inflation.)  If the governor’s Fiscal 2017 budget is adopted, this line item will have been increased by $42.8 million, or 24.4 percent, since Fiscal 2012.

That 24.4 percent increase since Fiscal 2012 for state-operated residential care can be compared to the 38.6 percent increase in the corporate provider residential line item. Moreover, that funding increase in the state-operated residential line item is actually a result of the underlying dynamic of privatization.

As we have noted before, there has been a net increase of 40 state-run group homes over the total number in 2008; but the state has closed state-run residences even as it has built new ones.  It appears the new state-run residences and the additional funding for those residences have been intended to accommodate the more than 250 people who have been transferred since 2008 from the closed developmental centers and the closed state-run homes.  Those are apparently the only people who have been admitted to the new state-operated homes.

As we’ve also pointed out, the administration does not even offer state-run residential facilities as options for developmentally disabled people waiting for residential care.  Privatized, corporate-run care has become the only “choice” available those people despite the fact that the federal Medicaid Law requires that developmentally disabled individuals and their guardians be informed of the available “feasible alternatives”  for care.

DDS administration (5911-1003): In addition to administrative functions, this line item funds DDS service coordinators, who are responsible for ensuring that clients throughout the system are receiving services to which they are entitled.  The service coordinators have seen their caseloads rise dramatically in recent years, but funding under this line item has never kept up with the caseload increases.

The governor’s Fiscal 2017 budget would cut the DDS administrative line item by $977,000, or 1.4 percent.  (In nominal dollars, the governor is proposing a slight increase in this line item, but it’s a cut when adjusted for inflation.)  Since Fiscal 2012, this line item will have been increased by 8.1 percent if the governor’s Fiscal 2017 budget is approved.

Other line items that demonstrate the administration’s commitment to increased DDS privatization include the following:

Community day and work 5920-2025: The governor’s budget would increase this line item by $5.6 million or 3 percent.  Since Fiscal 2012, this line item will have been increased by 45 percent if the governor’s Fiscal 2017 budget is approved. It appears that some of the increase proposed for this line item reflects the transfers of people from sheltered workshops to day programs.

Employment pilot program 5920-2026: The governor’s Fiscal 2017 budget would increase this line item by $4.6 million, which is a major increase, given that the current year appropriation is just over $3 million. That proposed 150 percent increase reflects the transition from sheltered workshops to supposed integrated employment.

The pattern of privatization in Massachusetts state government has become almost permanently established even though the benefits of privatization are highly debatable.  Many questions have been raised about the privatization of prisons  and the privatization of education in Massachusetts and elsewhere around the country.  The privatization of human services may be the biggest prize of all for government-funded contractors.  We need to preserve what’s left of state-run services.

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