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Disability Law Center aids woman who has been kept away from father and sister by DDS
In the wake of reports that an intellectually disabled woman has been prohibited for more than a year by the Department of Developmental Services from having any contact with her father and sister, a federally funded legal assistance agency has arranged for legal representation to help the woman challenge the ban.
The Boston-based Disability Law Center opened an investigation late last year of a decision by a DDS-paid guardian to prohibit contact between the woman and her father, David Barr, and sister, Ashley Barr. Based on privacy concerns raised by the DLC, we are no longer publishing the woman’s name.
Earlier this month, a DLC attorney said the agency had assisted in making an attorney available at no charge to the woman to challenge the visitation ban in probate court, if she chooses to do so. The attorney said he was precluded by confidentiality requirements from discussing the investigation or any conclusions he may have reached in the case.
Since Thanksgiving of 2015, David and Ashley Barr have had no information about the woman’s whereabouts. She is believed to be living in a DDS-funded group home, but the Barrs have no idea where that residence might be located.
COFAR has reported that a DDS guardian imposed the ban on all contact with the woman by David and Ashley primarily because they were viewed as too emotional when they were allowed to visit her. Neither David nor Ashley Barr have been charged or implicated in any crimes, yet they said they feel they have been treated by DDS as if they are criminals.
In COFAR’s view, restricting family members from visiting a loved one impinges on a fundamental human right, and the DDS guardian should at least have obtained a probate court order before doing so. DDS should also have made sure the woman had access to legal counsel who could challenge the visitation ban on her behalf. DDS reportedly did neither of those things.
The case appears to involve a clear 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…” (115 CMR 5.04)
The right to visitation is, moreover, a key aspect of family integrity in international human rights law. As an article in the Berkeley Journal of International Law states, “Sufficient consensus exists against particular types of family separation…to constitute customary international law.”
The article discusses Nicholson v. Williams, a class action lawsuit by a group of mothers against the New York City Administration for Child Services (ACS). The lawsuit “challenged ACS’s policy of automatically removing children from homes where domestic violence had occurred even if it meant removing them from the victims rather than the perpetrators of that violence.”
The children of the plaintiffs in Nicholson were kept in foster care for several weeks. According to the law journal, the court “cited the emotional and developmental damage done to the children, (and) the destruction of their family relationships…” that occurred as a result of the separation of the children from their parents (my emphasis).
We would note that the ACS lawsuit was a case involving the removal of children for just a few weeks. The Barr case involves the removal of a family member for more than a year so far, with no indication from DDS that family contact will ever be restored.
While the developmentally disabled woman in Barr case is no longer a child, she has been found to be mentally incapacitated and in need of a guardian. As such, she is in a similar legal position to a child in that she is not considered competent to manage her personal or financial affairs.
The court in Nicholson v. Williams cited specific international provisions including the Universal Declaration of Human Rights, and found that the New York ACS policy “violated the basic human rights of family integrity and freedom from arbitrary interference with family life, as well as the specific right of a child to be cared for by her parents.”
In what seems almost an obvious observation, but one that doesn’t seem to have occurred to DDS, the Berkeley law journal article notes:
People simply care a great deal about their families, and often suffer more from losing them than they do even from serious individual harms they suffer personally.
A couple of other points made in the law journal article are worth highlighting. One is a statement that temporary removal of children from families may cause “lasting harm to the children…especially if frequent visitation is not allowed during the removal period.”
The article also points out that the International Convention on the Rights of the Child (ICRC) imposes obligations on states in situations where families have already been separated. In particular, the ICRC states that where children are separated from one or both parents “the state must furnish the parents or children with any available information regarding their family members’ whereabouts” (my emphasis).
The Massachusetts Supreme Judicial Court weighed in last spring with a decision upholding the right of the grandfather of a developmentally disabled woman to challenge severe restrictions placed on his right to visit her.
As we’ve said before, and will again, major reforms are needed in the state’s probate court system in order to ensure the rights of families to maintain contact with their loved ones in DDS care. One of the first steps is for the Legislature to finally pass a bill (filed in the current session as HD 101) that would require probate judges to presume parents to be suitable guardians for persons with developmental disabilities.
DDS commissioner paints overly rosy picture of employment for developmentally disabled
In opening remarks at a conference on employment opportunities for the developmentally disabled late last year, Department of Developmental Services Commissioner Elin Howe gave what appears to be an overly rosy assessment of the likelihood of mainstream jobs for those people.
In her written remarks delivered to the November 30 conference, which was hosted by DDS and the UMass Institute for Community Inclusion, Howe appeared to imply that former participants in sheltered workshops, which the administration has worked to close, have been placed in mainstream jobs at a record rate.
“There are now more people working in individual jobs in the community than ever before,” Howe stated.
But while the numbers Howe cited show an increase in the number of people placed in mainstream jobs since 2013, it appears that most of that increase occurred between 2013 and 2014, before the workshop closures took place. Since 2014, DDS data indicates that the number of people finding mainstream jobs declined rapidly.
Howe noted that all remaining sheltered workshops in the state were closed as of last July 1, and that Massachusetts was only the fourth state in the nation to do that. But the loss of those workshops should not be a cause for concern, Howe contended, because, there were now more than 3,300 individuals working in “group supported employment” in the state – an increase of over 1,300 people since June 2013.
An increase of 1,300 disabled people in group supported employment would work out to a 65 percent increase in the number of people in that category since 2013, which sounds like a major success story.
But of that total increase cited by Howe of 1,300 individuals, 998 — or nearly 77 percent of them — appear to have entered group supported employment between 2013 and 2014, according to data provided by DDS.
The DDS numbers show there was an increase of only 146 people in group supported employment between August 2014 and August 2015. Between August 2015 and November 2016, when all remaining sheltered workshops were closed, there was an increase of only 156 people in group supported employment.
So, while the number of people in group supported employment appears to have increased by almost 50 percent between 2013 and 2014, the increase in the two-year period from 2014 to 2016 dropped to about 10 percent.
Group supported employment is defined by DDS as “a small group of individuals, (typically 2 to 8), working in the community under the supervision of a provider agency.” In contrast to sheltered workshops, supported employment places an “emphasis…on work in an integrated environment,” which means that developmentally disabled persons work in the same location as non-disabled individuals.
The closures of the sheltered workshops in Massachusetts has resulted in the removal from those programs of close to 2,000 participants since 2013; but those closures did not appear to have translated into a steady flow of people into supported employment. Even Howe appears to acknowledge that a significant percentage of those former workshop participants have not found mainstream workforce jobs.
In her remarks, Howe stated that “many people transitioned (from sheltered workshops) to Community Based Day Support programs,” but didn’t say how many. Day programs are often really just daycare programs that do not offer work-based or skill-building activities to the people in them.
The Massachusetts Developmental Disabilities Council, which is part of the Baker administration, appears to acknowledge the problem of employment in its State Plan for 2016, noting that:
…there are fewer people being placed in successful employment due to staff layoffs and the current fiscal environment. In order for more services to be made available, it is important to create partnerships and work with various state agencies in order to address this significant issue that is and will continue to be of concern. (my emphasis)
Last year, however, the Legislature failed to provide funding sought by Governor Baker for the transition from workshops to supported employment.
Rather than touting the supposed good news about the closures of the workshops, Howe should have acknowledged ongoing concerns about the apparent difficulty of finding mainstream work for people with developmental disabilities.
Opaque Massachusetts budget process hides state’s real priorities
In a preview this week of the Fiscal 2018 state budget, the Massachusetts Budget and Policy Center points out a key shortcoming in the budget process.
That process is not transparent, the nonpartisan think tank argues, because it doesn’t provide a needed context for the proposals and decisions that the governor and Legislature make.
As the Budget and Policy Center notes, that needed context lies in the release of a public “maintenance budget” that discloses the projected costs of continuing “current services” from one fiscal year to the next. Without that “maintenance budget” context, it is difficult, if not impossible, for the public to really know whether proposed funding levels are meeting real needs or falling short of them.
The problem can be clearly seen in the current-year funding of group homes operated by the Department of Developmental Services.
Last January, Governor Baker proposed a $3.7 million — or 1.7 percent — increase in the DDS state-operated group home line item. But while that sounds like more funding for those facilities, it was in actuality a cut when adjusted for inflation. The inflation rate was 1.8 percent, according to the Policy Center’s numbers.
Moreover, the funding increase proposed by the governor for the state-operated group homes was reportedly about $500,000 less than what DDS wanted in order to maintain current services in the residences. That $500,000 figure, however, wasn’t readily available to the public. The figure was casually mentioned by DDS Commissioner Elin Howe during a conference call on the budget last year with advocates for the developmentally disabled.
At the same time, Howe didn’t intend to do anything about that actual shortfall in funding for the state-operated group homes. As we noted last May, while Howe admitted the funding proposed by the governor for the group homes was inadequate, she also said DDS did not intend to seek an amendment in the House budget to increase that funding. Howe’s response to us was, “we’re just going to have to manage it.”
This is exactly why the maintenance budget disclosure is needed as part of the process. It would give the public a better insight into what the governor and Legislature actually intend with their budget proposals and deliberations.
It appears to us that the DDS mindset is that it is not worthwhile to push even for maintenance-level funding for the state-operated group homes and potentially other state-run programs. That’s because the Department’s ultimate priority or aim, as we see it, is to privatize these services.
Interestingly, the Budget and Policy Center also pointed out that certain other budgetary accounts were underfunded in the current fiscal year, including a human services account that helps fund corporate provider-run or privatized group homes in the DDS system. That account was underfunded by $14.7 million. However, the administration apparently plans to fully fund those accounts next year, the Center noted.
Partly as a result of the unfunded accounts and the use of a host of one-time revenues and temporary solutions to balance the current-year budget, the Policy Center is projecting a $616 million budget shortfall in Fiscal 2018.
The Policy Center’s preview suggested that one of the major reasons for the Legislature’s underfunding of the privatized group home and other accounts was the lack of a publicly available maintenance budget document. The Policy Center points out that 19 other states publish a maintenance budget document, but Massachusetts is not among them.
The Policy Center is also calling for the public release of a baseline tax revenue growth estimate. This sounds like a suggestion that the administration adjust its usual revenue projections to take into account any tax cuts or tax increases that have been enacted. As the Policy Center noted,
The initial tax revenue growth estimates for FY 2017 were unusually optimistic, but there was no easy way to see that because of the way the estimates were presented.
We concur with the Budget and Policy Center’s recommendations, particularly on the need for disclosure of a maintenance budget. The more information the public has with which to assess the budgetary process, the better off we are, and this appears to be a key piece of missing information.
Our January issue of The COFAR Voice is online
Our January 2017 issue of The COFAR Voice newsletter is now online, with stories about:
- The bleak outlook for the DDS budget for Fiscal 2018
- How a family has been banned for more than a year from all contact with a young woman in the DDS system
- Changes proposed by DDS in regulations on restraints and behavioral modification techniques that appear to make those rules more vague
- Publication of a gritty and compelling book on the life of Donald Vitkus, a survivor of the former Belchertown State School. The book was written by Ed Orzechowski, a COFAR board member and president of the Advocacy Network.
and much more.
Our January issue is a recap of highlights and critical issues we faced in 2016. It was a year that culminated in our December 29 meeting with two key members of Governor Charlie Baker’s staff. The unusual (for us) meeting was arranged by Marty Corry, our long-time, pro bono lobbyist on Beacon Hill.
COFAR’s December 29 meeting with key members of Governor Baker’s staff. From left are Kaitlyn Sprague, Baker’s legislative director; Ryan Coleman, Baker’s deputy chief secretary; Thomas J. Frain, COFAR Board president; Colleen M. Lutkevich, COFAR executive director; and David Kassel, COFAR communications director.
Prior to the meeting, Marty arranged a conference call in which we discussed how we would boil down the many issues we wanted to discuss into a format that could be absorbed in the half hour to 45 minutes that we expected we would have. In the end, Kaitlyn Sprague, Baker’s legislative director, and Ryan Coleman, Baker’s deputy chief secretary, talked with us for over an hour.
Our theme for the meeting was an emphasis on the rights of individuals with developmental disabilities and their families and guardians to the fullest possible choice in care and services. We focused on three areas of concern:
- Protecting and preserving the state-run line items in the DDS budget, particularly Line Item 5920-2010 (the state-operated group homes) and Line Item 5930-1000 (the developmental centers)
- Ensuring that DDS disclose state-run care as an option to people seeking services, as required by federal law. (The Home and Community Based waiver of the Medicaid Law [42 U.S.C., Section 1396] requires that intellectually disabled individuals and their guardians be informed of the available “feasible alternatives” for care.
- Achieving the passage of H. 1459, which proposes that a spouse or parent be presumed in probate court to be the proper person to be a guardian of a developmentally disabled or otherwise incapacitated person unless competent evidence is introduced to the contrary.
We consider H. 1459 to be a critically important rights measure for family members of people with disabilities — particularly developmental disabilities. We have found that families are routinely overruled in decisions about the care of their loved ones in probate court proceedings by medical and clinical “experts,” DDS, probate court judges, and service providers. Yet, this bill, which has no known source of opposition, dies every year in the legislative process.
Enactment of this legislation could prevent tragic situations such as the ongoing case of the Barr family in which the father and sister of an intellectually disabled woman, have been prevented by a DDS-paid guardian from all contact with her for more than a year.
Our January newsletter touches on all of these issues. We hope you will check it out. It’s coverage you will find nowhere else.
COFAR blog 