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Judge Joseph L. Tauro, a giant in the treatment of the developmentally disabled, dies at 87

December 3, 2018 Leave a comment

Retired U.S. District Court Judge Joseph L. Tauro, who oversaw the upgrade of the institutional system of care for the intellectually and developmentally disabled in Massachusetts for decades starting in the 1970s, died on November 30 at the age of 87.

Tauro changed the course of history for persons with developmental disabilities in Massachusetts. His many rulings in the landmark Ricci v. Okin class action litigation over conditions in the institutional system in the 1970s and 1980s improved the lives of thousands.

Judge Tauro

The Honorable Joseph L. Tauro

“Judge Joseph L. Tauro treated developmentally disabled individuals and their families with dignity and compassion, and he listened when no one else would,” said Colleen Lutkevich, COFAR executive director. “In 1972 and for the next twenty years, he took a disgraceful system of care where people were warehoused in overcrowded facilities with minimal services, and he used the power of his office and the law to bully and cajole the state and federal government into doing the right thing.”

Tauro ruled in the case of Ricci v. Okin, a combined class-action lawsuit first brought by activist Ben Ricci over the conditions at the Belchertown State School.  Those conditions were chronicled in Ricci’s book, Crimes Against Humanity, and later in books such as You’ll Like it Here, a 2016 account  by Ed Orzechowski of the life of Donald Vitkus, a survivor of the former Belchertown State School.

In 1972, separate lawsuits were initially filed on behalf of the residents of five state schools: Fernald, Dever, Monson, Wrentham, and Belchertown. The lawsuits charged that the facilities were understaffed and that conditions in them were inhumane.

Tauro, who visited the facilities to observe the conditions first hand, noted two decades later in his 1993 disengagement order from the case that the legal process had resulted in major capital and staffing improvements to the facilities and a program of community placements. Together, those improvements and 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.”

“Services in the facilities were turned around through increased funding and staffing,  and the community system of the Department of Developmental Services was also built, allowing appropriately placed residents to find new homes and jobs in cities and towns all across Massachusetts,” Lutkevich said.  “For those who remained in the facilities, their days also became meaningful, with clinical services, and therapeutic, recreational and work opportunities never before thought possible.”

Involvement in the effort in the 2000s to keep Fernald open

Despite his official disengagement from the Ricci case, Tauro’s involvement in the case did not end after 1993. Eleven years after his disengagement order, he went on to play a dramatic role in an effort by the original plaintiffs in the case to keep the then Fernald Developmental Center open in the face of attempts by the then Romney and later Patrick administrations to close it along with other remaining developmental centers in Massachusetts.

Ultimately, Tauro’s 2007 ruling in the case that the Fernald Center should remain as a residential option to its residents was overturned by the First Circuit U.S. Court of Appeals.

The Appeals Court ruling dealt an enormous blow to the decades of work that Tauro had done in the Ricci case, in part, because the appeals court’s decision included no deference to Tauro’s rulings and expertise. Nevertheless, Tauro’s re-involvement in the case after 2004 demonstrated his caring and humanity as clearly as his earlier involvement had in the 1970s and 1980s.

Speaking about the residents of the Fernald Center during a November 2004 hearing in his courtroom on the potential reopening of the case, Tauro noted that many of those residents were elderly. “In the remaining moments of their lives,” he said, “they ought to be treated with great dignity.”  His remark drew strong applause from the close to 200 observers in the courtroom, many of whom were family members of the residents.

Successive administrations undercut Tauro’s rulings in the Ricci case

Efforts to chip away at Tauro’s legacy in the Ricci case began in the early 1990s under then Governor William Weld, who moved to close nine state-run human services facilities in Massachusetts, including three developmental centers serving the developmentally disabled.

Then in 2003,  then Governor Mitt Romney announced plans to close at least four of the six remaining state-run developmental centers. All of those facilities had undergone upgrades in care and conditions as a result of Tauro’s involvement in the Ricci litigation. Hundreds of millions of dollars had been spent on the upgrades.

Starting with Fernald, those remaining facilities slated for closure included the Glavin, Monson, and Tampleton centers.

Plaintiffs charge that Tauro’s disengagement order had been violated

In 2004, Beryl Cohn, an attorney for the original Ricci plaintiffs, charged that the Romney administration was trying to close Fernald in violation of Tauro’s 1993 disengagement order.  Cohen cited the administration’s planned closure of Fernald in conjunction with
“unprecedented” personnel reductions and budget cuts in the then Department of Mental Retardation system.

According to the plaintiffs, some 30 years after the Ricci class action lawsuit had been filed, the Romney administration had allowed a recurrence of some of the same conditions at certain of the state facilities that had sparked the original case, including insufficient staffing, lack of equipment, delayed maintenance,  infestation of vermin, and other problems.

Tauro’s disengagement order had also required that before anyone could be transferred out of a state-run facility, care in the new location must be certified as equal or better.

In July 2004, the then Fernald League and other plaintiffs filed a motion in U.S. District Court to seek Tauro’s renewed involvement in the Ricci case.

During a contentious hearing in his courtroom in November of 2004,  Tauro appeared to accept the argument that a rush to close Fernald and the other facilities without adequate plans for the welfare of their current residents could violate his disengagement order. He also noted that many communities had not accepted group homes for the developmentally disabled, and that it could be difficult to find placements for Fernald residents.

“What’s the advantage in hurrying to speed up the closing (of Fernald) if it’s going to speed up litigation that’s going to last for five years?” Tauro said in pointed remarks to counsel for the Department of Mental Retardation and DMR Commissioner Gerald Morrissey, who was in attendance. “I don’t know if I’ll accept this case. If I do, I’ll come up with a solution…Let’s get it done right so everyone applauds it.”

Tauro forbids discussions of transfers from Fernald 

In January 2005, Tauro stated that he was prepared to step back into the case if Cohen were to demonstrate that care and services to transferred individuals were being cut. He ordered DMR officials to provide Cohen with Individual Support Plans (ISPs) for all Fernald residents, including those who had been transferred elsewhere.

Over the next six months, Tauro continued to hold hearings. In June of that year, he warned the administration not even to discuss transferring residents out of Fernald with families unless the ISPs stated the moves were appropriate. “If there is no ISP in place, then
there will be no discussions on transfers (out of Fernald),” Tauro said, as DMR Commissioner Gerald Morrissey and his legal staff sat before him in the courtroom. “If that’s not going to happen, then we are going to have a little trouble.”

Tauro appoints U.S. attorney as court monitor in Fernald closure 

In February 2006, Tauro appointed then U.S. Attorney Michael Sullivan as Court Monitor in the case and asked Sullivan to review the transfers by DMR of 49 residents from Fernald since 2003.  Pending the completion of Sullivan’s review, Tauro ordered a halt to all further transfers from Fernald to other locations.

In March 2007, in a stunning blow to the Fernald closure advocates, Sullivan recommended to the newly installed Patrick administration that Fernald remain open.

In making the recommendation that Fernald remain open, 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.” Nevertheless, Sullivan concluded that the state had followed the letter of Tauro’s 1993 disengagement order in that administration officials had technically certified that persons transferred from Fernald would receive equal or better care.

Sullivan also told Tauro that he found two areas of “significant concerns” in community-­based care. One involved the delivery of medical services in the community, and the second involved the potentially higher risk of abuse and neglect in community­-based residences than in the facilities and other state-­operated residences.

Final ruling that Fernald must be offered as a residential option

Despite Sullivan’s recommendation, the Patrick administration did not back away from the Romney administration’s position on the developmental centers, and continued to press ahead to close Fernald.

That led to Tauro’s final ruling in August 2007 that Fernald residents and their families and guardians must be offered the option of remaining at Fernald. The ruling was seen by the administration as preventing the closure of Fernald, and the administration appealed the ruling to the First Circuit U.S. Court of Appeals.

Tauro’s final ruling is overturned

Without considering the merits of Tauro’s reasoning in his 2007 ruling, the three-judge federal appeals court panel ruled in October 2008 that Tauro never had jurisdiction to reopen the Ricci case. As such, the appeals court allowed the Patrick administration to proceed with Fernald’s closure. That closure, however, was not completed for another six years as more than a dozen families and guardians of the remaining residents exercised their right to administrative appeals of the transfers of the residents.

Tauro seals the records

After the First Circuit Court of Appeals overturned his 2007 ruling that Fernald remain as a residential option, Tauro closed the Ricci case and sealed the documents. Among those documents was a report that Sullivan had provided to Tauro on what appeared to be the involuntary removal from Fernald of Anna Tross,  a 91-year-old resident of the facility.

According to testimony at a March 2008 hearing held by Tauro into the circumstances surrounding Tross’s removal from Fernald, Tross had told several people that she didn’t want to leave Fernald.

Appeal to U.S. Supreme Court to restore Tauro’s Fernald order fails

In February 2009, the Fernald plaintiffs, represented by Hofstra University law professor Leon Friedman, filed a petition for Certiorari with the Supreme Court, seeking to restore Judge Tauro’s 2007 order keeping Fernald open as a residential option.

The petition also sought to resolve the issue of whether Appeals Courts should give deference to district court decisions in consent-decree cases.  In this instance, the First Circuit Court acknowledged that it had not given any deference to Judge Tauro, despite his 35 years of expertise in overseeing the Ricci case.

The Supreme Court declined without comment to issue a Writ of Certiorari to consider the Fernald plaintiffs’ appeal.

Created national models

The Boston Globe noted that in his 41 years on the bench, Tauro “crafted decisions that created national models not only for the care of the developmentally disabled, but also for the rights of the mentally ill to refuse unnecessary medication and avoid solitary confinement except in emergency situations.”

“Whatever powers the Constitution has granted our government, involuntary mind control is not one of them, absent extraordinary circumstance,’’ Tauro wrote in a decision in the 1970s that established what are known as “Rogers Orders,” protecting the rights of the mentally ill.

“Judge Tauro was a fearless judge and a moral humanitarian who made the ‘impossible’ possible,” Lutkevich said. “He nearly single-handedly changed the lives of thousands of individuals with intellectual disabilities and their families.  COFAR families are forever grateful to him.  May he rest in peace.”

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Father and sister will finally be allowed contact with disabled woman as 3-year DDS family-separation order is eased

November 13, 2018 2 comments

After three years, a state employed guardian is at least partially lifting a ban on family contact with a developmentally disabled woman, and is allowing the woman’s father and sister to visit her.

In a November 6 email to Ashley Barr, the disabled woman’s sister, Dorothy Wallace stated that she was granting permission to Ashley and to David Barr, the woman’s father, to visit the 30-year-old woman for the first time since November 2015. The woman has been diagnosed with an intellectual disability and mental illness.

Wallace has never clearly explained the reason for her family separation policy, which has nevertheless been upheld by the Department of Developmental Services. DDS pays Wallace to serve as a guardian to the woman and to other departmental clients.

Chelsea, David, and Ashley Barr

David and Ashley Barr. They have been prohibited, for unclear reasons, from contact with their developmentally disabled family member for the past three years.

In her email, Wallace wrote that she would now allow visits because the woman’s mother, Nancy Barr, has been sentenced in a criminal case involving the sexual assault of the disabled woman by Nancy Barr’s boyfriend, John Leone. Nancy and David Barr have been divorced since 2003.

Nancy Barr pled guilty on November 6 to sexual assault charges and was sentenced to two years in prison. Leone pled guilty to similar charges in May and is serving a three to five-year prison term. The sentencing of both Leone and Nancy Barr had repeatedly been delayed during the past year.

During the period of the assaults, the woman had been under the care of her mother and had been living in her mother’s home. David Barr said that Nancy has also been diagnosed with mental illness.

Neither David nor Ashley, nor any other members of the family were involved in the abuse of the disabled woman or were ever charged in the case.

Yet, for the past three years, Wallace prohibited all members of the family other than an aunt from having any contact with the woman, and had not even informed the family as to where she has been living. We are withholding the woman’s name because she was a victim of sexual assault.

Ashley, whose first visit with her sister following the lifting of the ban was today at a DDS area office, said her sister appeared alert and happy to see her and her father. Regular weekend visits will be scheduled for the foreseeable future at a group residence in Haverhill in which her sister is now living.

Ashley also said she intends to apply in court to become her sister’s guardian and that David is supporting her in that.

Ashley told COFAR that in the months prior to the November 2015 ban on visitation, her sister appeared drugged when they were allowed to visit her, and, in one instance, did not appear to have been bathed.

COFAR has repeatedly asked Wallace and DDS for an explanation for the family contact ban specifically on David and Ashley. In an email to both Wallace and DDS Commissioner Jane Ryder on November 9, I also asked what the sentencing of Nancy Bar, in particular, had to do with the family separation policy.

David and Ashley had been among the most involved family members in the woman’s life and care, and have led the family’s effort to resume contact with the woman. To date, neither Wallace nor Ryder have responded to our queries about the case.

In her November 6 email, Wallace implied that she is stepping down as the woman’s guardian, stating that, “With the completion of the sentencing (of Nancy Barr), I have fulfilled my obligation to (the disabled woman) and as promised to Ashley and Mr. Barr they can now coordinate visits with (the woman).”

We have never seen another case in which such a complete and lengthy prohibition on contact was imposed on family members who were not charged or, as far as we know, accused of any serious misconduct with regard to a disabled individual. As we’ve said before, we think this ban has been enforced in violation of DDS regulations, which state that people in the Department’s care have the right …“to be visited and to visit others under circumstances that are conducive to friendships and relationships…”

We think there is a fairly universal consensus that family separation in social services should be imposed only as a last resort, and then should be used sparingly and for as short a time as possible. If family separation is imposed, authorities should be transparent about it and communicate as much information as possible to those family members affected. In our view, none of those criteria were met in this case.

During the past three years, different reasons have been given to the Barr family for the separation policy:

  • In an August 2015 hearing in probate court, Wallace testified, according to the hearing transcript, that she was imposing restrictions on contact between the woman and her father and sister because David and Ashley became overly emotional when they had been allowed to visit her.
  • Wallace contended that those visits, which took place in hospital settings after the arrests of John Leone and Nancy Barr on the assault charges, caused the woman to exhibit psychotic symptoms afterwards.
  • Last February, Ashley was told by DDS General Counsel Marianne Meacham that there was concern on someone’s part that a visit from David and Ashley would somehow make the woman “lose focus” in preparing to testify in the trial of Leone and Nancy Barr. Meacham told Ashley that visits would be permitted once the trial, which was originally scheduled to be held in April, was over.
  •  Despite Attorney Meacham’s contention that the ban on family contact was related to the then ongoing criminal case, a spokesperson for the D.A.’s office told COFAR in February that the D.A. was not responsible for the ban, and that it had been ordered by Wallace.
  • And despite the assurances given to Ashley, visits with her sister were not scheduled even after Leone pled guilty to sexual assault last May. David and Ashley were now told they would not be allowed any contact with the woman until Nancy Barr was sentenced in the case. That sentencing occurred only last week.

DDS officials appeared to be biased against the family

As COFAR reported, Wallace and other DDS officials made a number of statements about Ashley and David during the August 2015 probate court hearing that appeared to indicate a bias against them.

Many of the statements appeared to be hearsay or to lack  foundation, including Wallace’s statement that hospital clinicians told her the woman exhibited psychotic symptoms after visits from David and Ashley. At the time of her testimony, Wallace had been appointed as the woman’s temporary guardian.

The court hearing concerned a request by David and Ashley that they resume regular contact with the woman and that David be appointed as her permanent guardian. The judge, however, ruled instead in favor of the appointment of Wallace, the candidate recommended by DDS, as the woman’s permanent guardian. David Barr had tried without success to gain guardianship of the woman after his divorce from Nancy Barr in 2003.

Despite the judge’s ruling in 2015, the court does not appear ever to have issued an order banning any members of the family from having contact with the woman.

Ashley acknowledged she and her father did become emotional during visits with her sister prior to the complete visitation ban in November 2015 because she appeared upset at being kept isolated from them and often appeared to be over-medicated.

“For several visits we did cry in front of (her sister), I mean how could we not?” Ashley said in an interview in 2016. “She was alone, scared, by herself, and just went through a horrific thing for about two years. So yes, my father and I did cry, and I was an emotional mess for a very long time.  Watching my sister all drugged up, she could barely talk, and given the state she was in, it was very hard to keep it in. I walked out of the room most of the time so my sister wouldn’t see me.”

In one of the last instances in which they were allowed to visit the woman, Ashley said it appeared she had not been bathed.  Ashley said she personally gave her a shower at the hospital. Her hair was so dirty and matted, Ashley said, that she had to use an entire bottle of shampoo and conditioner to untangle it.

Little information and little help from legislators

After the woman told a family friend about the alleged abuse in 2014, the friend reported the matter to police, and the woman was immediately removed from her mother’s care. She was apparently placed in a shared living arrangement, but that location was not disclosed at the time to any other members of the family.

In the months that followed, the family was only sporadically informed about their family member’s whereabouts.  Ashley and her father said that virtually no information was provided to them for the first month after her removal. They were then allowed to visit her only a handful of times, either at a DDS area office or in Massachusetts hospitals to which she was admitted, reportedly after psychotic episodes.

David and Ashley said they tried for months after the ban on further contact was imposed to get answers from DDS and from Wallace, and got little or no response from them. They also contacted their local legislators and got little help, and even went to the media, but were unable to get any news outlets to report their story.

Ashley said the ban on contact was so complete that when she found out in May 2016 that she was pregnant, Wallace denied her request that her sister be allowed to come to the baby shower. She said Wallace also told her that her sister would not be informed that she was pregnant.

One aunt allowed visits, another blocked

For unknown reasons, the only family member who has been allowed to visit the woman has been a maternal aunt who apparently agreed not to reveal the woman’s location to Ashley or David. The aunt told COFAR, however, that she thought David and Ashley should be allowed to visit the woman.

In the meantime, another aunt of the woman’s as well as a family friend were blocked from visiting her.

In an interview with COFAR in August of this year, Susan Zeytoonian, a paternal aunt of Ashley’s, said she had accompanied Ashley to visit the woman shortly before Wallace banned all family contact. Zeytoonian said that prior to the removal of the woman from her mother’s care, the woman had frequently spent time at her house.

According to Zeytoonian, the woman was happy to see them during their 2015 visit and “came runnng down the hall.” She said she had not seen her niece since that visit.

The family friend who initially reported the alleged sexual abuse of the woman to police had initially been allowed to visit her. However, the friend told COFAR that when she tried to visit the woman at Tewksbury State Hospital in April 2016 on her 28th birthday, she was told that she was no longer there.

The friend said she was also told by a staff member at the hospital that she too had been placed on a no-visitor list.  She said she was not given a reason for that prohibition.

Disability Law Center tried to find a solution in the case

In early 2017,the Boston-based Disability Law Center temporarily intervened in the case to ask a state-appointed attorney who is representing the woman, to support family visits if the woman wished that. However, that effort was not successful.

The attorney, Melissa Coury Cote, told COFAR in March 2017 that she would not support court permission for visits to the woman by David or Ashley Barr, despite the DLC’s request. Cote provided no reason for opposing family visits other than to say that the woman had not specifically asked her to allow visits from her father and sister.

However, Ashley Barr said at the time that her sister had recently called her father on two occasions and said she missed her family and wanted to see them. The calls were apparently unauthorized. Ashley said she and her father didn’t know whose phone the woman used to contact them.

While we are glad that a step toward reuniting the family has finally been taken by Wallace and DDS, we remained concerned that the Department and its professional guardians do not appear to operate in accordance with the Department’s own regulations on the rights of its clients and their families.

This case, moreover, illustrates the need to make reforms to the DDS-probate court system that ensure that clients and families are treated fairly and their rights and wishes are respected. Among the reforms we have proposed are the following:

  • Passage of legislation requiring probate court judges to presume that family members are suitable guardians of persons with intellectual and developmental disabilities.
  • The provision of free legal assistance to family members and guardians who been barred from contact with their loved ones in the DDS system or who have otherwise faced retaliation from the Department or from providers.
  • The provision of free legal assistance to family members whose guardianships are challenged by DDS.
  • A policy statement by DDS that the Department will make every effort to comply with the federal Developmental Disabilities Assistance and Bill of Rights Act, and, in particular, the statement in the law that individuals with developmental disabilities and their families are “the primary decision makers.”
  • Increased financial oversight of the corporate provider system and the DDS/probate guardianship system.

Without reforms such as these, we are afraid cases such as this one will happen again and again.

Movement to replace guardianship appears based on little research

November 7, 2018 3 comments

A juggernaut of support has been building in Massachusetts and around the country to replace guardians of persons with developmental disabilities with more informal “support networks” of advisors.

Yet, the growing movement behind “Supported Decision Making” (SDM) appears to be primarily ideological, and little research appears to have been done on the impact of SDM on disabled individuals and their families.

Under SDM, individual guardians are replaced by teams or “network supporters,” who enter into written agreements with disabled individuals to “help them make decisions” about their care, finances, living arrangements and other areas.

Proponents of SDM claim that it restores the right of disabled and elderly persons who are under guardianship to make their own life decisions with help, if needed, from networks of supporters. That right has been overly curtailed by guardians, the SDM proponents maintain.

Even the United Nations Convention on the Rights of Persons with Disabilities included language in 2008 “that embraces supported decision-making and which is seen by some as requiring nations to adopt supported decision-making mechanisms,” according to a 2013 article on SDM in the Penn State Law Review.

Still, not everyone is convinced that all guardianships should be terminated, or that they should be replaced by SDM. As that same law journal article by Nina A. Kohn, Jeremy A. Blumenthal, and Amy T. Campbell, noted, “…despite much rhetoric touting its (SDM’s) advantages, little is known about how supported decision-making processes operate or about the outcomes of those processes.”

Without more information, the 2013 article stated,

…it is impossible to know whether supported decision-making actually empowers persons with cognitive and intellectual disabilities. Furthermore, there is reason to be concerned that supported decision-making might actually have the opposite effect, disempowering such individuals or making them more vulnerable to manipulation, coercion, or abuse.

COFAR has raised concerns about SDM, contending it could marginalize family members as decision makers in the care of their loved ones with developmental disabilities. COFAR has also raised a concern that SDM networks can potentially include service providers – a situation that would appear to pose a conflict of interest if the provider is also providing services to an individual for whom it is participating in an SDM network.

In Massachusetts, the state Senate included a provision in the state’s Fiscal 2019 budget last spring for a commission to study replacing guardianship in the state with SDM. (S.2530). While such a study would ordinarily be welcome, the proposed study commission under the budget legislation appeared to be comprised primarily of SDM supporters. And while the study was not included in the final state budget, its proponents will no doubt keep trying to insert a similar study commission in future budgets.   

The SDM study commission would have included representatives from the Arc of Massachusetts, the Center for Public Representation, and other SDM proponents, including Mass. Advocates Standing Strong and the National Association to Stop Guardianship Abuse.

COFAR would support a commission to study SDM. But it should be an impartial study, and not dominated by anti-guardianship organizations.

Massachusetts also appears to have been moving in the direction of SDM in recent years with the adoption of “person-centered planning,” a process that also appears to lack oversight and to have the potential to put much of the decision-making power over an individual’s funds into the hands of private companies.

Yet, even major legal organizations such as the American Bar Association appear to have made up their minds in favor of SDM; and like many other SDM proponents, the ABA appears to be basing its position on ideology rather than research or clinical standards.

In email exchanges with COFAR in September and last month, Dari Pogach, an attorney with the ABA’s Commission on Law and Aging, implied that a guardian may not be necessary even for some persons with severe or profound intellectual or developmental disabilities.

Pogach stated that the decision to replace an individual’s guardian with an SDM network should be based on the person’s ability make their own decisions. Yet, no clinical diagnosis or standard of cognitive ability is necessary to make that determination, she wrote.

The paradox of SDM

The view that no clinical diagnosis is needed in determining whether an individual is capable of making their own decisions appears to be linked to the ideological position of many SDM proponents that virtually all persons, no matter how cognitively impaired they might be, are capable of making life decisions.

Yet, in their Penn State Law Review article, Kohn et al. pointed out that:

…there is a potentially unavoidable paradox in acknowledging that a person has diminished decision-making capacity but maintaining that he or she is nevertheless capable of meaningfully contributing to decision-making discussions and that the decisions that result from such discussions reflect his or her wishes. (my emphasis)

Kohn at al. included the following quote from a 2009 discussion paper on SDM issued by the Office of the Public Advocate in Victoria, Australia:

Can a person be assisted through information, emotional support or in some other way to make their own decisions if they do not have, for example, an appreciation of the significance of the decision they are making or a reasonably consistent set of values? 

Lack of research on outcomes of SDM

In their article, Kohn et al. said they had found no research “evaluating the quality of decisions reached using supported decision-making.” Such research is needed, and should include whether a decision increases an individual’s welfare in some way, they wrote.

Similarly, Kohn et al. stated that there has been little or no research on the demographics of guardianship and SDM. It is unknown, for instance, how many people in the United States are subject to guardianship.

While researchers have estimated that approximately 1.5 million people in the United States are subject to guardianship at any given time, Kohn et al. stated, the actual numbers are unknown, in part, because many states fail to provide the types of records that would enable a national assessment.

Kohn et al. also stated that it is unknown what portion of persons subject to guardianship are persons with intellectual disabilities, and it is unknown what percentage of guardians are “public guardians,” as opposed to family members, friends, or other third parties. It can be reasonably assumed, they stated, that most guardians are not public guardians.

To that extent, it would appear to us that SDM is primarily aimed at replacing family members of persons with developmental disabilities as guardians.

Kohn et al. further noted that research is needed on who does best at helping a developmentally disabled person to reach a “beneficial decision.” Is it family members, friends, health-care providers, or others?

Our experience has been that family members make the best guardians, and, as noted, that there is a potential conflict of interest in allowing providers to assist developmentally disabled persons in making decisions.

In fact, Kohn at al. stated that:

…when we turn to more informal arrangements such as supported decision-making, which may occur in private and with less accountability, the potential for financial or other abuse likely increases. However, data do not seem available on the incidence of such abuse in the supported decision-making context. (my emphasis)

No distinction drawn between people with different levels of disability

The Kohn article raised an additional concern that although SDM is often seen as particularly likely to benefit persons with intellectual and developmental disabilities, “a fundamental concern with these demographic data (about SDM) is that it is unclear how representative they are of individuals with ID (intellectual disability).”

Yet, even the Kohn article did not appear to fully acknowledge or recognize that people with the same type of intellectual disability may have different reactions to SDM and to guardianship depending upon the level or severity of their disability.

For instance, the Kohn article suggested that research is needed to probe whether SDM might lead to “coercive discussion processes or even abuse that might vary with the principal’s age group or type of disability.” But the article did not question whether such variations might be due to a person’s level or severity of disability.

That is an important distinction, in our view, because it would seem that SDM might work well for persons with very mild levels of intellectual disability, but would not work well with people with severe or profound levels of that same type of disability.

In sum, we think legislators, courts, and other policy makers need to slow down when it comes to guardianship reform and think more carefully about how that should be accomplished. We have listed our own reform recommendations, which we think get at the root of the problems that guardianship does pose today.

Reform of the guardianship and probate system is needed, but that doesn’t mean the system should be replaced with something that hasn’t yet been sufficiently researched.

Committee airs testimony on sexual abuse of the disabled, but offers little indication of its next steps

November 1, 2018 3 comments

While members of a legislative committee heard testimony on Tuesday about sexual abuse of the developmentally disabled in Massachusetts, the state lawmakers on the committee gave little indication as to what they plan to do with the information.

COFAR was one of several organizations invited by the Children, Families, and Persons with Disabilities Committee to testify. The committee members asked no questions of any of the three members of COFAR’s panel, who testified about serious and, in one case, fatal abuse of their family members in Department of Developmental Services-funded group homes.

Children and Families hearing 10.30.18

Tuesday’s hearing on sexual abuse in the DDS system. The committee members asked no questions of COFAR’s panel.

COFAR President Thomas Frain, Vice President Anna Eves, and COFAR member Richard Buckley also offered recommendations to the committee, including establishing a registry of caregivers found to have committed abuse of disabled persons, and potentially giving local police and district attorneys the sole authority to investigate and prosecute cases of abuse and neglect.

The hearing drew some mainstream media coverage (here and here); but, while COFAR had alerted media outlets around the state to the hearing, most of the state’s media outlets, including The Boston Globe, did not cover it.

Committee asks no questions

Following the hearing, Frain said he was glad to get the opportunity to testify, but frustrated that the members of the committee seemed to lack interest in what he and COFAR’s other panel members had to say.

“It crossed my mind, were the committee members told not to ask any questions?” Frain said. “How divorced and disengaged is the Legislature that they can hear this testimony and not even have a follow-up question about an agency they’ve voted to fund?”

The hearing was the second since January involving testimony invited by the Children and Families Committee on the Department of Developmental Services system. The general public was allowed to attend, but not permitted to testify publicly before the committee in either hearing. The committee has given no information regarding the scope of its review of DDS.

COFAR has continued to ask for information from the committee as to the full scope of its review, and whether the committee intends to produce a report at the end of that review.

COFAR panel describes abuse and neglect

On Tuesday, Richard Buckley testified about his 17-year quest for answers to his and his family’s questions about his brother’s death in a group home in West Peabody in 2001. Buckley’s developmentally disabled brother, David, had previously been sexually abused in a group home in Hamilton, and was ultimately fatally injured in the group home in West Peabody.

David Buckley received second and third degree burns to his buttocks, legs, and genital area while being showered by staff in the West Peabody residence run by the Department of Developmental Services. The temperature of the water in the residence was later measured at over 160 degrees.

David died from complications from the burns some 12 days later, yet no one was ever charged criminally in the case, and the DDS (then Department of Mental Retardation) report on the incident did not substantiate any allegations of abuse or neglect.

Richard Buckley urged the committee to take action to reform the DDS system. “If nothing is done, the next rape, assault or death, will be on you,” he said. “And we will remember that.”

Buckley also read testimony from another COFAR member, Barbara Bradley, whose 53-year-old, intellectually disabled daughter is currently living in a residence with a man who has been paid by a DDS-funded agency to be her personal care attendant. In her testimony, Bradley said the man initiated a sexual relationship with her daughter, and later brought another woman, with whom he also became sexually involved, to live in the same residence.

Anna Eves discussed the near-death of her son, Yianni Baglaneas, in April 2017, after he had aspirated on a piece of cake in a provider-operated group home. The group home staff failed to obtain proper medical care for Yianni for nearly a week after he aspirated. He was finally admitted to a hospital in critical condition and placed on a ventilator for 11 days.

DDS later concluded that seven employees of Yianni’s residential provider were at fault in the matter. Nevertheless, at least two of those employees have continued to work for the provider, Eves said.

“The systems that are in place are not working and we are failing to protect people with intellectual and developmental disabilities in Massachusetts,” Eves testified. “We have to do better.”

Eves urged the committee to support a minimum wage of $15 an hour for direct care workers, more funding for the Disabled Persons Protection Commission, and passage of “Nicky’s Law,” which would establish a registry of caregivers found to have committed abuse or neglect. Such persons would be banned from future employment in DDS-funded facilities.

Eves also noted that licensing reports on DDS residential and day program providers that she reviewed — including the provider operating her son’s group home — did not mention substantiated incidents of abuse or neglect. She said Massachusetts is falling behind a number of other states, which provide that information to families and guardians.

In his testimony, Frain also urged the committee to support more funding for the Disabled Persons Protection Commission, the state’s independent agency for investigating abuse and neglect of disabled adults. Because the agency is so grossly underfunded, he suggested that the committee consider either “fully funding” the agency or “partnering with the local police and district attorneys’ offices and let them investigate” the complaints.

Frain maintained that staffs of corporate providers, in particular, face pressure not to report complaints to the DPPC, and that the agency, in most cases, has to refer most of the complaints it receives to DDS. That is because the DPPC lacks the resources to investigate the complaints on its own.

Moreover, Frain maintained, the current investigative system is cumbersome. It can sometimes take weeks or months before either the DPPC or DDS begins investigating particular complaints, whereas police will show up in minutes and start such investigations immediately.

Frain also contended that “privatization of DDS services has been at the root of many of these problems.”

Other persons and organizations that testified Tuesday included DDS Commissioner Jane Ryder, the Arc of Massachusetts, the Massachusetts Disability Law Center, and the Massachusetts Developmental Disability Council.

COFAR is continuing to urge the Children and Families Committee to hold at least one additional hearing at which all members of the public to testify publicly before the panel. COFAR has also been trying to obtain a clear statement from the committee as to the scope of its ongoing review of the Department of Developmental Services.

For a number of years, COFAR has sought a comprehensive legislative investigation of the DDS-funded group home system, which is subject to continuing reports of abuse, neglect and inadequate financial oversight.

Gifts of the Sheltered Workshop

October 14, 2018 Leave a comment

Guest post 

Note: This post was written and sent to us from Thomas Spellman and Dona Palmer of Delavan, WI.  Although all sheltered workshops were closed in Massachusetts as of 2016, we are still pushing for a resumption of work opportunities for clients of the Department of Developmental Services in this state.

As a result, we think Thomas Spellman’s and Dona Palmer’s points about sheltered workshops remain applicable to Massachusetts, just as they are applicable to work opportunities programs provided to developmentally disabled people across the country. 
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Introduction

Before we present the gifts of the “Sheltered Workshop,” let us take a step back and look at the big picture. What we see among Sheltered Workshop participants is a continuum, from mild to severe brain impairment.

While these individuals are all disabled, their NEEDS differ significantly.  A major contributing factor is behavior. While behavior is not a disability in and of itself, it can be a complicating factor in the employment of a disabled individual and in their life in general.

While the ability to “work” varies significantly among persons with brain impairment, behavioral issues and physical disability, those persons must do work that is meaningful to them. Whether it is just a smile or it is working for General Motors, the work must be meaningful to the person doing it.

As we all know, each person with a disability (or their guardian) has the right to choose where they “work” and where they live. This is a foundation of the Americans with Disability Act (ADA).

While the right of each person to choose is important, it is EQUALLY IMPORTANT that a variety of work experiences be available that address the varied needs of all of those individuals who are disabled. Sheltered Workshops MUST BE AVAILABLE to those with disability(ies), cognitive impairment, physical challenges and behavioral issues.

sheltered workshop photo

A sheltered workshop in New Jersey, which, unlike Massachusetts, has so far kept its sheltered workshops open

We know of the benefits of a Sheltered Workshop because our daughter Rosa has been working at VIP Service, a Sheltered Workshop in Elkhorn, Wisconsin, for fifteen years.

We use the term “Sheltered Workshop,” which in the past was accepted as a very good description of a safe place for people with disabilities to work. As we know, today it clearly is used by some in a derogatory manner, as in “You work at a Sheltered Workshop, and not in the community!! Poor you!”

Gifts of the Sheltered Workshop

First and foremost is the gift that the Sheltered Workshop exists!! (See note above about Massachusetts.) Without its existence, NONE of the rest of the Gifts WILL EVER BE REALIZED by the tens of thousands of disabled individuals who realize some or all of the Gifts every day!!!

Second is that there is WORK to do. While WORK is a human experience, and there is much written about WORK by others, we know from our own experience that WORK is fulfilling. Rosa has said that about the WORK that she has done at VIP.

While a person’s production rate may seem important, the more important issue is accuracy in order for WORK to be of economic value. Is the product that is being completed done exactly the way that it needs to be done? That is a challenge, and in some cases a major challenge to providing work to those who are disabled.

Third is the 1986 amendment to the Fair Labor Act of 1938, which provides for a “Special Minimum Wage” for persons with disabilities.

This is NOT a “Sub-minimum Wage. Sub-minimum Wage is a term that was coined by the National Disability Rights Network to negatively describe the “special minimum wage” as described by Section 14 (c)(A)(5) of the Fair Labor Standards Act of 1938 as amended. 

New terms such as prorated wages or commensurate wages are used, but it is the CONCEPT and not the name that is critical to the existence of Sheltered Workshops.

The logic underlying the “Special Minimum Wage” is simple and clear. If Rosa produced half what a full-time worker would produce, then she will receive half of the financial benefit for doing that specific job. It may need to be audited from time to time, BUT THERE IS NOTHING THE MATTER WITH the concept.

If we want significant meaningful WORK for people who have mild to moderate brain impairments and or physical impairments, then we MUST HAVE the Special Minimum Wage. If the Special Minimum Wage is ELIMINATED,  Rosa and tens of thousands of others whose disabilities limit their ability to work WILL HAVE NO WORK AT ALL.

Fourth is The VARIETY of JOBS that an individual can experience. We have only recently realized the importance of this. Rosa has learned over 100 jobs in the fifteen years that she has worked at VIP. Each of those jobs required her to trust Pam, her supervisor; to listen to Pam, to comprehend what Pam is saying, and when necessary ask Pam for help on how to do something.

Having been with Pam for 15 years, Rosa is proficient at each of those tasks. The hardest thing for her was asking for help. The VARIETY of job experiences has allowed her to grow to become more independent.

It needs to be noted that while some individuals may be able to do a two or three-step assembly job, they may not be able to collate a ten-page letter. Some may be able to put labels correctly on a bottle while others cannot. This variety of JOBS is very, very important to the growth and health of all those who work at a Sheltered Workshop.

Fifth is that besides the variety of jobs, there is the allowance to work at different speeds. It makes no difference in a Sheltered Workshop if an assembly job takes a minute or ten minutes. To know that what you are doing, and the speed that you are doing it, is OK is very important. It is one of those things that one might not see as a Gift, but surely it is.

Sixth is the Stability of the Sheltered Workshop. The schedule stays the same. The workers are the same. There is a place to go to WORK and be with FRIENDS. There is a stability of workers and supervisors. For Rosa and, we assume, many others, KNOWING what tomorrow will bring is VERY, VERY important in their lives. She “implodes” emotionally when the “activities” (as she calls them) of the day are not known.

For Parents and Guardians, KNOWING that the Sheltered Workshop WILL BE THERE WHEN THEY are NO LONGER CAPABLE OF caring for their loved one, is of even GREATER IMPORTANCE! It is to know that the Social Contract to take care of a son or daughter who is disabled WILL BE HONORED by the community of the next generation.

Seventh is Family. For many individuals with disabilities, their personal living situation can be disrupted by a change of ownership of the residential facility that they call home. The “home” can be too expensive or it can be too big or not big enough, and of course it can close. When an individual is forced to change households, they lose that “family,” and so the stability of the people at a Sheltered Workshop becomes their family. As I was preparing this, I realized that Rosa will grieve our deaths with her Sheltered Workshop family. 

Eighth is Safety.  Both physical and personal safety are priorities at Sheltered Workshops. That extra caution is reassuring to both the workers and their parents and/or their guardians.

Ninth is Friends and Community. What is special about the Sheltered Workshop is that with time, true friendships do develop with both the other workers as well as with the supervisors.

Fifteen years ago, Rosa bonded with Pam, a PAID STAFF member at VIP Services. Rosa has shared with Pam the births of Pam’s girls, hearing the baby stories, and now watching the girls show their goats at the County Fair.

And now Pam has accepted the role of guardian if both of us become unable to be Rosa’s guardian.  It is despicable to use the term PAID STAFF in a derogatory manner, which some disability rights individuals do. They imply that because someone is a paid staff member, there is not a real bond.

What is CRITICAL TO UNDERSTAND HERE is that our personal individual associations are part of what defines us as INDIVIDUAL HUMAN BEINGS. These relationships, in large part, will be with OTHERS much like ourselves. These relationships are our very essence. There must be an ACKNOWLEDGEMENT OF THIS MOST BASIC HUMAN FACT.

Tenth is that transportation is made available. A few Sheltered Workshop participants may be able to drive, but the vast majority of workers at Sheltered Workshops need a ride to work. In those cities with bus service and a Sheltered Workshop on the bus line, a few more individuals are able to catch the bus to get to work, but there still are a significant number, who without affordable transportation being provided, will NOT BE ABLE TO WORK.

Eleventh is the Staff.  Yes, the staff of the Sheltered Workshop is a gift. Some disparagingly call them PAID STAFF,  but they are a group of highly trained individuals giving of themselves in many ways that would not be easy for many of us to deal with on a daily basis. To imply that these tens of thousands of staff members can be replaced in the for-profit workforce now being called “community integrated employment” is beyond absurd.

Twelfth is that Sheltered Workshops allow participants to take extended vacation time, in turn allowing parents who are retired to take longer vacations without endangering their son’s or daughter’s job when they return. Will a Walmart allow a 6-week vacation? That’s the amount of time our family spends in Florida in March and April of each year.

Thirteenth is that Sheltered Workshops are also a backup for those persons who are having a hard time at their public employment place of work. It may be for a few weeks or it may be a permanent change, but it is critical that the Workshops be there. The alternative to not being successful at Public Employment Work CANNOT BE SITTING AT HOME WATCHING TV!!

Thomas Spellman and Dona Palmer can be contacted at tmspell@execpc.com

Advocacy group appears to say persons with even the most profound intellectual disability may not need guardians

October 9, 2018 5 comments

We are questioning statements from a leading organization seeking to reduce or eliminate guardianships that imply that a guardian may not be necessary even for some of the lowest functioning people with intellectual or developmental disabilities.

In an email to me on September 27, Dari Pogach, a staff attorney with the American Bar Association’s Commission on Law and Aging, stated that decisions to appoint or terminate guardians “should not be based on diagnosis or condition.”

That statement appears to imply that an individual’s diagnosed level of disability is irrelevant in determining whether that person needs a guardian; and therefore, even the most profoundly cognitively impaired persons may not need guardians.

The ABA Commission is working with the National Center on Law and Elder Rights (NCLER) to replace guardianships with a more informal process called Supported Decision Making (SDM).

Under SDM, individual guardians are replaced by teams or “network supporters,” who enter into written agreements with disabled individuals to “help them make decisions” about their care, finances, living arrangements and other areas. The network supporters can include family members, but they can also include corporate service providers, according to the Center for Public Representation, which is pushing for SDM in Massachusetts. 

COFAR is concerned that SDM, which is part of a growing effort to reduce or eliminate guardianships, could marginalize family members in decisions made about the care of their loved ones with developmental disabilities. That’s because it is primarily family members who seek to become guardians of incapacitated persons after they reach the legal age of adulthood at 18.

The VOR, a national advocacy organization for people with developmental disabilities, adds that SDM “could weaken protections for those who are the most vulnerable.”

Pogach’s full statement to me was as follows:

The decision to appoint a guardian in the first place, or terminate the guardianship, should not be based on diagnosis or condition, but rather on the person’s ability to make their own decisions, with or without support and to be safe from abuse, neglect and exploitation (my emphasis).

The problem with this statement, in our view, is that it raises a troubling question. If clinicians are not required or allowed to consider an individual’s clinical level of disability, how can they determine what a person’s ability is to make their own decisions?  It would seem that in that case, that determination would become totally arbitrary.

Pogach’s statement draws no distinction between levels of intellectual or developmental disability, and appears to imply further that people even with the most severe or profound levels of such disabilities may be capable of making their own decisions about life choices and care without the need of a guardian.

Pogach was a panelist in an NCLER-sponsored webinar on August 22 that discussed efforts by the organization to terminate guardianships in a number of instances involving persons who were elderly or had developmental disabilities. As a member of the webinar audience, I submitted a written comment and a question to the webinar panelists.  Pogach’s September 27 email was in response to my comment and question.

In my comment to the webinar panel, I stated that COFAR was concerned that SDM could “marginalize family members who we have found often make the best guardians for persons with intellectual and developmental disabilities.”

I also noted that severe and profound levels of intellectual and developmental disability present very different issues from moderate levels of those conditions, and we did not necessarily see those distinctions made by the webinar panelists.

Finally, I posed the question whether any protections were possible under SDM to ensure that a family member would not be “outvoted” on an SDM team by providers, clinicians and others who may not have the same degree of interest in the wellbeing of the disabled individual.

In her September 27 email in response, Pogach included the following statement:

The purpose of SDM is not to marginalize family members. SDM is predicated on the person being at the center of the decision-making process, and that includes choosing who will act as a (network) supporter. It is also means the person can choose to agree or not to agree with everyone in their supported decision-making network, including providers, clinicians, and family members. (my emphasis)

This response raises further questions and concerns for us. It appears to imply that not only can an individual with an intellectual or developmental disability, no matter how severe or profound, make their own decisions about their care, they can overrule family members and others on their SDM team or network.

While that viewpoint might appear to be simply meaningless if it were to be applied to extremely low-functioning persons, it is nevertheless concerning because it further implies that family members, in particular, should not be making decisions about the care of their developmentally disabled loved ones.

Pogach’s statement added that:

When supported decision-making is working, the person does not follow the majority vote of the (SDM network) supporters. The role of the supporters is to listen, help the person understand their options, and help the person to make their own decision. (my emphasis)

As noted, this viewpoint appears to make no distinction between people who are elderly, for instance, and persons with developmental disabilities, or between high functioning individuals with developmental disabilities and those with severe or profound levels of disability.

The fact that support for SDM has become an ideological position is evident in a statement in a law journal article by Leslie Salzman, a prominent SDM proponent:

Virtually everyone has the ability to participate in the decisions affecting his or her life, with the possible exceptions of persons who are comatose or in a persistent vegetative state. (my emphasis)

For Salzman, it’s apparently more likely than not that even a person in a persistently unconscious state can participate in making decisions about their care.

In an October 1 email in response to Pogach, I stated that we have seen instance after instance in which providers, clinicians, state agency managers, and other professionals have sided with each other and against family members in disputes over care of the individuals in question. The views and concerns of the family members are often dismissed or ignored in these cases, even though it is usually the family that knows the individual best. And, of course, family members are almost always the only people in this group with strong emotional bonds to the individual.

I also noted that the federal Developmental Disabilities Assistance and Bill of Rights Act (PL 106-402) states that “Individuals with developmental disabilities and their families are the primary decision makers regarding the services and supports such individuals and their families receive…” (my emphasis)

No distinction made between family members and professionals as guardians

While abuses in the guardianship system certainly occur, we think the potential for abuse is greater when professional guardians are involved than when family members are guardians. DDS pays attorneys and corporate entities to provide guardianship services to persons in cases in which family members are not available or have been removed as guardians.

As we have reported, there is relatively poor oversight of the professional guardianship system, at least in Massachusetts.

However, while SDM might be seen as a solution to the abuses committed by professional guardians, we are concerned that it may just shift the potential for exploitation from those professional guardians to corporate providers.

These state-funded providers have a direct financial stake in the care of persons with developmental disabilities. As such, including providers in an SDM network establishes a potential conflict of interest. Yet, the Center for Public Representation, a prominent SDM supporter, suggests that an SDM network can include “family members, co-workers, friends, and past or present providers.”

We have also reported that many of the same organizations that are advocating for SDM as an alternative to guardianships, including the Center for Public Representation, have also been involved in efforts to restrict congregate care and promote privatization of care for the developmentally disabled.

In sum, we do agree that significant reforms are needed in the guardianship/probate court system with respect to persons with intellectual and developmental disabilities. But we see that exploitation as being due primarily to rampant privatization and its connection to poor governmental oversight of professional guardians, and not to the appointment of family members as guardians.

SDM could be a viable component of the reform of the current system, provided there is an acknowledgement that SDM is not appropriate or suitable in every instance and that there are persons who simply cannot reliably make their own life choices and will ultimately need to have guardians. In cases in which SDM is determined to be an appropriate option, a way needs to be found to ensure that the family member or members on the SDM network remain the primary decision maker(s) on the network.

I noted to Pogach that the following are some of the additional reforms we have proposed to the system: 

  • Increased financial oversight of the corporate provider system and the DDS/probate guardianship system.
  • Passage of legislation requiring probate court judges to presume that family members are suitable guardians of persons with intellectual and developmental disabilities.
  • The provision of free legal assistance to family members and guardians who been barred from contact with their loved ones in the DDS system or who have otherwise faced retaliation from the Department or from providers.
  • The provision of free legal assistance to family members whose guardianships are challenged by DDS.
  • A policy statement by DDS that the Department will make every effort to comply with the Developmental Disabilities Assistance and Bill of Rights Act, and, in particular, the statement in the law that individuals with developmental disabilities and their families are the primary decision makers.

We’re anxious to hear back from Pogach on this. Unfortunately, the movement to reduce or eliminate guardianshps appears to be yet another area in which ideology is replacing both common sense and scientific, evidence-based policy making. We need to maintain those latter values.

Senator Warren’s concern about payment of subminimum wages to developmentally disabled people is misplaced

September 28, 2018 2 comments

Massachusetts Senator Elizabeth Warren has proven to be one of the nation’s most effective advocates for workers and their financial security; but we think she’s wrong in charging that persons with intellectual and other developmental disabilities are being exploited by work programs that pay them a subminimum wage.

Warren is leading an effort in Congress to eliminate waivers that have allowed employers to pay a subminimum wage to disabled persons who are hired by employers in mainstream work settings. Warren alleges that payment of subminimum wages under the so-called 14(c) certificates or waivers is exploitative and discriminatory.

We would agree that for disabled people with normal intellectual functioning, payment of subminimum wages is exploitative and unnecessarily discriminatory; but a distinction needs to be made in the case of persons who have intellectual or other developmental disabilities that severely limit cognitive functioning.

In not making this distinction in calling for the elimination of the subminimum wage waivers, Warren is making the same well-intentioned mistake that many people in the advocacy community have made. That mistake is to assume that all developmentally disabled people are exactly the same as non-disabled people in terms of their employment potential and, even more importantly, their employment aspirations.

Those assumptions overlook a number of realities, including the fact that virtually all developmentally disabled persons who are placed in those work programs receive government assistance in some form for residential care, day care, or other services. Unlike non-disabled persons, most, if not all, individuals with significantly impaired cognition are not seeking to support themselves financially through work. They are seeking to occupy their time with activities that are meaningful and satisfying to them.

As the brother of an intellectually disabled person noted to me, his brother has no understanding of the concept of money, and wouldn’t know or be able to appreciate whether he was paid a minimum wage rate or not.

In an April 23 letter to U.S. Labor Secretary Alexander Acosta, Warren and six other senators attempted to link payment of subminimum wages to problems of abuse and poor work conditions in work settings for people with developmental disabilities. The letter cited four instances in which disabled persons were forced to work in sweatshop-like conditions, including a case in Iowa in which intellectually disabled men were working in a turkey processing plant for little or no wages and were subjected to verbal and physical abuse and unsanitary conditions.

But as is the case with abuse or poor conditions in any care-related or work setting, the instances cited in Warren’s letter appear to be the result of poor governmental oversight of those programs. Those problems could have been avoided or could be rectified with proper oversight. The problems were not necessarily the result of payment of subminimum wages.

Moreover, citing isolated instances of abuse in specific work settings doesn’t prove it is a problem in all work settings. In fact, we have not heard of any instances of such exploitation or abuse occurring in sheltered workshops or other work activity programs in Massachusetts.

We have made a number of attempts to contact Warren about this issue. I left separate voicemail messages since Monday of this week with Warren’s Washington and Boston Senate offices. On Monday, I also posted what was essentially this blog post on her website contact page, and asked if she or her staff would respond.  To date, I’ve gotten no response and no call back.

The unfortunate impact of the effort to prohibit employers from paying subminimum wages to developmentally disabled people is that rather than paying them higher wages, most employers choose not to employ them. So the end result is that these disabled individuals miss out on satisfying and meaningful ways to occupy their time.

As we have reported, DDS data show that the number of developmentally disabled persons being placed in integrated or mainstream employment paying at least the minimum wage in Massachusetts has been steadily dropping in the past few years.

During Fiscal Year 2016, a high of 509 clients in the Department of Developmental Services system newly started working in mainstream jobs.  That number dropped to 127 clients entering integrated employment during Fiscal 2017, and to a net increase of only 98 clients during Fiscal 2018.

We are assuming that demand for these mainstream jobs remains high, possibly in the thousands. That there was a net increase of less than 100 developmentally disabled persons in integrated employment in Fiscal 2018 appears to show that the administration has been unable to find jobs for people who want them.

Promises in closing sheltered workshops haven’t been kept

In 2014, the administration of then Governor Deval Patrick began closing sheltered workshops in Massachusetts that provided developmentally disabled persons with piecework activities because those facilities supposedly segregated those persons from their non-disabled peers and paid them less than minimum wage. The Baker administration followed that same policy, ultimately closing all remaining workshops as of the fall of 2016.

The plan of both administrations was to provide training to those former workshop participants and place them in mainstream workforce settings along with supports that would help them to function in those settings.

We expressed concerns at the time, however, that the workshop closure policy was being pursued without knowing, among other things, whether sufficient jobs existed in the private sector for all of those former workshop participants and others who want jobs.

Unfortunately, our concerns have proved to be well founded. Instead of being placed in mainstream or integrated jobs, the vast majority of the former sheltered workshop participants have ended up in DDS-funded Community Based Day Supports (CBDS) programs, which offer little or no work opportunities, and have left many of those people frustrated and bored.

DDS data also show that the DDS day program population increased by 81% from Fiscal 2014 through 2018 in Massachusetts while integrated job placements increased by only 19%. The chart below reflects this trend and illustrates the fact that the total day program population in the DDS system has caught up with and even surpassed the total number of departmental clients in integrated employment since Fiscal 2014.

Chart on DDS integrated employment vs. day program population

Barbara Govoni, the mother of one former sheltered workshop participant, is continuing to advocate for legislation that would allow for the return of piecework activities in her son’s CBDS program.

Direct care workers are the ones who are exploited

Ultimately, Senator Warren’s concern about exploitation is misplaced. It is not the developmentally disabled who are exploited by subminimum wages. Rather, it is the people who are hired by DDS-funded providers to care for them who are usually the victims of systematic exploitation in this field.

As we have noted, direct-care workers in the DDS system, who do have to work in order to feed themselves and their families, are the ones who Senator Warren and other advocates for the disabled should be concerned about.

When direct-care workers are underpaid, it is not only they and their families who suffer, but the very people who depend on their services who suffer as well from substandard care. Paying developmentally disabled people less than minimum wage as part of their work programs doesn’t harm them. Paying their caregivers less than a living wage does.