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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.

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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.

DDS appears to look the other way as provider illegally bans guardian from daughter’s group home

May 14, 2018 21 comments

Despite a broadly worded state regulation that gives residents of state-funded facilities the right to be visited, a human services provider agency is upholding a directive barring a guardian of a developmentally disabled woman from entering her group home.

Yet, the Department of Developmental Services does not appear to be pushing the provider to rescind its months-long ban.  Instead, the Department appears to have decided to ignore the fact that the ban exists.

The August directive from the provider, Toward Independent Living and Learning, Inc. (TILL), stated in writing that the guardian, Susan Fernstrom, “will not go into the residence” even to bring food or other items to her daughter, Holly. “Anything you need to deliver to the residence must be given to the staff or the manager and they will see that it is properly put away,” the directive stated.

In their most recent exchange about the situation, Susan emailed Jennifer Killeen, DDS area director, on May 4, stating that the ban was restricting her ability to serve as Holly’s guardian. In an email in response to Susan on May 8, however, Killeen did not address that concern or mention the ban.

Instead, Killeen’s email described the TILL directive as simply “calling for coordination and notice of any visits to the home…” As such, Killeen said, the directive was “reasonable and compliant with DDS regulations concerning visitation.” This was exactly the same language used by DDS Regional Director Kelly Lawless in an email to Susan in April regarding the TILL directive.

Killeen had also advised Susan in an email on May 2 to establish “regular discussions with TILL and the DDS Service Coordinator about your concerns.”  But when Susan raised the issue of the ban in a phone call with Dafna Krouk-Gordon, TILL’s president, two days later, she said Krouk-Gordon flatly refused to rescind the ban.

It is abundantly clear that the TILL directive goes further than calling for coordination and notice of visits. It bans Susan outright from entering the home.

We have previously noted that we have heard of no evidence that Susan ever acted in a disruptive way either inside the home or in any other location. It appears that the only reason for TILL’s prohibition against her from entering the home and for a subsequent notice of eviction of Holly is that Susan pointed out deficiencies in the staff’s compliance with Holly’s medically necessary dietary restrictions and with conditions in the residence on a number of occasions.

DDS regulations, which give DDS clients the right to receive visitors, specifically state that family members and guardians shall be permitted private visits “to the maximum extent possible.”

The regulations add that clients and their family members and guardians must be allowed to meet “under circumstances that are conducive to friendships and relationships,” and that the location must be suitable “to confer on a confidential basis.”

Enforcement of the ban raises further questions

Enforcement of the ban on entering the home appears to be up to the discretion of the staff and to Krouk-Gordon. Susan said she was allowed three visits in Holly’s room in April, two of which were used to help Holly pack for an upcoming trip and to try on clothes.

Susan noted that not only was she not allowed in the kitchen in the three instances in which she was admitted to the house since August, she wasn’t even allowed in the living room with Holly. Her visits were confined to Holly’s bedroom. She said she has not been allowed for nearly a year into the basement where Holly keeps seasonal clothes and personal items.

In most instances since last August, Susan has been made to wait outside the house for Holly, even in the dead of winter. She said she has even been made to stand outside the house while signing paperwork involving Holly’s care.

As we have reported, in addition to having an intellectual disability, Holly has a serious genetic metabolic condition called galactosemia, which requires a diet free of galactose, a form of sugar found in milk and cheese. That diet must be strictly adhered to in order to avoid complications including brain and kidney damage. Holly must also eat multiple servings of vegetables because she does not metabolize all the nutrients in her food.

Susan has in the past raised concerns that the group home staff was not following her instructions either in buying food for Holly or preparing and serving it to her. Her complaints appear to have led directly to the issuance of the directive banning her from the residence.

Susan said that in the phone call she had with Krouk-Gordon on May 4, Krouk-Gordon declined to discuss Susan’s concerns about Holly’s diet or other issues involving care and conditions in the group home.

Because Susan has only been provided sporadic access to the house since last August, she has been unable since then to determine what Holly is being fed. That has impeded her ability to function effectively as Holly’s guardian and to assure her health and wellbeing.

Krouk-Gordon has not returned phone calls or emails from COFAR for comment on the case.

Susan said said Holly’s dietician at Children’s Hospital had come to the house when Holly moved in, in June 2015, to help management and staff and to also explain why Holly’s diet was so important.

“During Fran’s (the dietician’s) presentation, she stressed to management and staff they should defer to me on Holly’s diet because I knew as much as she did about a galactose-free diet,” Susan wrote to us in an email. She added that she was involved in helping recruit subjects for a first-ever study on adults with galactosemia.

Susan said that to the extent the TILL directive has specified coordination of communication with TILL, the agency hasn’t followed the directive. For instance, Susan said she has not been able to get in contact with the group home’s current nutritionist.

“I’m very worried about what’s going in that house with her food,” Susan said. She said that while Holly is supposed to eat a lot of vegetables, she is concerned, based on Holly’s own reports to her, that she is not getting the food she needs.

During her May 4 phone call with Krouk-Gordon, Susan said Krouk-Gordon also wouldn’t say whether she would rescind the eviction notice for Holly, which she had also issued in apparent violation of DDS regulations. After only a short discussion, Susan said, Krouk-Gordon ended the phone conversation, saying, “‘Your time is up.'”

On April 24, DDS Commissioner Jane Ryder responded to an April 17 email I sent her regarding the TILL ban on entering the residence and a number of Susan’s other concerns. Ryder stated that DDS cannot comment on the specific matters I raised because that would violate client confidentiality. Ryder stated only that, “DDS has been working with the provider and families involved to address any issues and will continue to do so.”

On May 7, I emailed Ryder back, asking whether she could comment generally as to whether providers are permitted to ban guardians from access to residential facilities when there has been no demonstrated disruption of the facilities by those guardians. To date, Ryder has not responded to my query.

Tens of millions of dollars in government funding

As a recipient of state funding, TILL is obligated to comply with state law and DDS regulations.

TILL received $38.6 million in “government grants (contributions)” in Fiscal Year 2017, according to the organization’s IRS 990 form, although the form doesn’t specify which agency or agencies the funding came from. We are assuming the funding is primarily from DDS.

According to the IRS form, Krouk-Gordon received $321,772 in compensation as president of TILL in Fiscal 2017.  Kevin Stock, TILL vice president, received $229,988 in total compensation.

I’ve checked back to Fiscal 2015 so far, and TILL does not appear to have filed the standard online Uniform Financial Report with the state that contractors are supposed to file. That report is supposed to show how much the agencies get in state funding from identified agencies.

I called the state Operational Services Division earlier this month to ask why TILL’s UFR reports don’t appear to contain required information. I haven’t received a call back.

TILL’s financial and business practices have in the past been the subject of controversy.  A January 2002 report by the state auditor stated that TILL, under Krouk-Gordon’s management, had spent more than $4 million in state funds in “unallowable, undocumented, and questionable business activities.” We reported on this in The COFAR Voice in 2005.

In an email to Jennifer Killeen on May 9, which was copied to Commissioner Ryder, I urged DDS “to fully acknowledge the facts and the truth” about TILL’s treatment of Susan and Holly. In particular, I urged DDS to acknowledge the existence of the ban on Susan from entering the group home.

This is an important test for DDS, in our view. If the agency isn’t even willing to acknowledge the clear facts of the cases before it, it cannot effectively carry out its mission of supervising the care of the most vulnerable among us.

New Yorker article on guardianship abuses has familiar ring

November 8, 2017 Leave a comment

An article last month in The New Yorker magazine on abuses in the guardianship system in Nevada is beyond disturbing, and its findings echo many of the concerns we have raised about the dysfunction of the Department of Developmental Services and probate court systems in Massachusetts.

The New Yorker article is primarily about abuses by guardians of the elderly, and it gets into an issue we haven’t fully explored, which is the financial exploitation of people who are represented by professional guardians. But we think many of the article’s points are relevant to the system involving DDS-paid guardians in Massachusetts.

As we have seen in several cases in Massachusetts, the DDS-probate guardianship system has trampled over the rights of family members of developmentally disabled persons, including sharply limiting or even eliminating their right in some cases to contact or visit their loved ones. That is also apparently a feature of the system described in the New Yorker piece.

As is the case in Massachusetts, the primary problems with the system exposed by the New Yorker article appear to lie with abuses by attorneys or other professionals who are appointed as guardians of incapacitated individuals. In many of these cases, family members, who would be better suited to be the guardians, are passed over by the courts and excluded from consideration for that role.

The article and previous reporting by The Las Vegas Review-Journal disclose how two professional guardians named April Parks and Jared Shafer used the probate system in Nevada to become court-appointed guardians of hundreds of people who were mostly elderly, and then took control of their bank accounts, estates,and property.

It isn’t clear whether that type of financial abuse has happened to developmentally disabled persons in Massachusetts, but there appears to be a potential for it. In 2008, an investigative article in The Boston Globe found that some 900 DDS clients in Massachusetts received little or no benefit from trust funds containing some $30 million.

Instead, the money was largely siphoned out of the accounts to pay bank management charges, legal bills, and fees charged by the Massachusetts Probate and Family Court system, “which has long neglected its obligation to ensure the funds are expended for the benefit of some of the state’s most helpless citizens.”

In July, COFAR reported that the state’s system of paying attorneys and corporate providers to serve as guardians of DDS clients is poorly overseen and that the system appears to give professional guardians an incentive to do little work representing individual clients while taking on as many clients as possible.

Families have also been victimized financially by the Massachusetts system. As one family member of a DDS client in Massachusetts described the attitude of the various guardians and clinical and court professionals that she dealt with in the DDS-probate system, “it was just a given that our checkbook was theirs.”

The New Yorker reported that without their families even knowing it, in many instances,  elderly people were removed from their homes by Parks and Shafer who then sold their property and pocketed the money. Parks was indicted last spring on theft and other charges after the local media finally ran stories on the issue.

The New Yorker article further stated that when family members tried to contest the guardianships or become guardians themselves, “they were dismissed as unsuitable, and disparaged in court records as being neglectful, or as drug addicts, gamblers, and exploiters.”  That sounds familiar to us because it is what we’ve seen in a number of cases in Massachusetts.

Another revelation in the article that sounded familiar to us was that the professional guardians often would not inform families about the care and conditions of their loved ones, and often prevented family members from being able to visit them. The director of an assisted-living facility into which many of the wards were placed, is quoted as saying that families were “devastated that they couldn’t know if the residents were in surgery or hear anything about their health. They didn’t understand why they’d been taken out of the picture. They’d ask, ‘Can you just tell me if she’s alive?’ ”

In one case, an elderly couple was moved with little notice by April Parks to a new assisted-living facility. When their daughter tried to visit them there, Parks refused to let her see her parents. According to the article, Parks later wrote that she had told the woman that “she was too distraught to see her parents, and that she needed to leave.” When the woman refused to leave the facility, Parks had the police called who then cited the woman for trespassing.

This sounds very similar to the reasoning given for keeping David and Ashley Barr from visiting David’s daughter, a developmentally disabled woman who has been ordered kept from their contact by a DDS-paid guardian since November 2015. The Barrs were supposedly too emotional when visiting her even though they said the reason they were emotional was because they often found her to be in a heavily drugged state during the visits.

Another family was prevented from talking to their daughter on the phone for a similar reason.

Another revelation in the New Yorker article that had a familiar ring was a description of the longstanding inaction of investigative authorities when presented with evidence of abuses in the guardianship system.

As we’ve said many times, a first step in reforming the DDS-probate system in Massachusetts would be for the Legislature to enact H.887,  a bill which would establish a presumption that parents of a developmentally disabled person are suitable guardians for that person.

The bill would thus make it harder for parents to be bypassed by probate judges who tend to side with DDS, which often favors the appointment of professional guardians in the place of families.

H.887, however, has been stuck in the Judiciary Committee since last January despite the fact that there appears to be no public opposition to the measure. It has been re-filed by Representative David Linsky in every Legislative session since 1999, but has never gotten out of the Judiciary Committee to our knowledge.

We’re hoping, as usual, that this year will be different. But despite a supportive statement last spring from Representative Claire Cronin, House chair of the Committee, that the bill was her “top priority,” the measure hasn’t moved forward in the current legislative session.

It’s time for the Judiciary Committee to finally act on H.887.  The numbers to call there are:

(617) 722-2396 for the office of Rep. Cronin, House chair; and/or

(617) 722-1280 for the office of Senator William Brownsberger, Senate chair.

As noted, this bill is only a first step. We are continuing to urge others in the Legislature as well to step forward to address the underlying systemic problems in the DDS and probate court systems.

State’s system of paying guardians and attorneys for the developmentally disabled appears secretive and poorly overseen

State payments to attorneys and corporate providers to serve as guardians of developmentally disabled clients are rising rapidly, yet the payment system appears to be secretive and subject to spotty oversight.

An investigation by COFAR shows the system in Massachusetts and regulations that support it also appear to give professional guardians an incentive to do little work representing individual clients while taking on as many clients as possible.

In addition, the fact that professional guardians are paid by the Department of Developmental Services appears to interfere with their legal obligation to act in the best interest of their disabled clients. We have found in a number of cases that both professional guardians and attorneys appointed to provide legal representation to disabled clients have sided with DDS when family members have gotten into disputes with DDS over the care of those clients.

In one case on which we have reported, a developmentally disabled woman’s state-appointed attorney has sided with a DDS-paid guardian in not allowing any family visitation of the woman for an indefinite period of time. In that case, David Barr, the father of the woman, and Ashley Barr, the woman’s sister, have been banned from all contact with her, and even from knowing her whereabouts, for more than a year and a half.

We believe this and similar cases raise questions whether DDS-paid guardians and state-paid attorneys consistently act in the best interests of their clients.

COFAR examined probate court documents and payment data involving attorneys and corporate entities paid by DDS to provide guardianship services to persons in which family members are not available or have been removed as guardians.

COFAR has also sought information on the payment of attorneys who are hired under the probate system to provide legal representation to incapacitated persons. In those cases, the court approves attorneys as counsel, and the attorneys are paid by a state agency called the Committee for Public Counsel Services (CPCS).  As noted below, the CPCS did not respond to COFAR’s request for that information.

The following chart shows the top-paid DDS guardians in Fiscal Years 2013 and 2016:

 

Top ten DDS guardians chart

COFAR considers becoming a guardian to be a critically important step for family members when loved ones with intellectual and incapacitating developmental disabilities reach the age of 18. After an individual reaches that age, only that person or a guardian acting on their behalf has legal standing to make decisions about their care in the DDS system.

Anyone wishing to become a guardian of a developmentally disabled or otherwise incapacitated person must apply to the probate court to do so. When DDS wishes to pay an attorney to serve as a professional guardian of an individual, it recommends to the court that the attorney be appointed as the guardian.

Under probate law, there are no specific qualifications required of professional guardians such as expertise in mental health issues.

Information about professional guardians and attorneys difficult to obtain

Information about what professional guardians and attorneys do for the clients they are paid to represent in the probate system can be difficult or prohibitively expensive to obtain from DDS and particularly from the CPCS.

Because the CPCS is technically a part of the judicial branch of government, it is not subject to the state Public Records law, according to an attorney we consulted with the state’s Public Records Division.  The CPCS would not provide COFAR with any information about the attorneys they employ or the amounts paid to them.

DDS did provide us with a list of guardians it employs and payments made to them, in response to a Public Records request (see chart above showing the top 10 highest paid guardians in Fiscal 2013 and 2016). However, the Department said it would have to pull records from “multiple offices” in order to determine what those guardians do for their payments and how many clients they represent.  That information would cost us $3,000, a department attorney wrote.

The DDS payment data also raised a number of questions that the Department did not answer.  For instance, there was no guardian listed as the recipient of payments totaling $30,295 on the DDS list in Fiscal 2016. DDS stated that it had no records indicating who those payments may have gone to. (See payment chart above with “???” notation.)

DDS’s response indicates that the department does not have a centralized accounting system to keep track of invoices submitted by guardians for payment. (It appears that this money comes from the clients’ individual Medicaid accounts, but is paid through DDS.)

Independent guardianship office proposed to address accountability issues

In one apparent effort to address at least some of the accountability issues with the current system, a bill in the Legislature (H. 3027) would establish an independent agency called a  “Public Guardian,” which would have centralized authority over the hiring and payment of guardians in cases in which family members are not available to serve as guardians of incapacitated people. Under the bill, the Public Guardian would take over the responsibility from agencies such as DDS of recommending and paying guardians.

While COFAR supports the concept of an independent public guardian, we are concerned that H. 3027 specifies that the public guardian would not actually be a public agency, but rather would be a nonprofit agency.  We believe the public guardian should be a public agency, which would be subject to the state Public Records Law and other legal requirements that apply to public agencies.

COFAR also strongly supports a second reform measure (H. 887), which would boost the rights of families in the DDS/probate system.  The bill would require probate court judges to presume that the parents of incapacitated persons are the suitable guardians for those persons. The measure, however, has never gotten out of the Judiciary Committee.

Payments to guardians on the rise

The list provided by DDS of guardians it employs shows that the department’s total payments to guardians increased between Fiscal 2013 and 2016 from $602,474 to $800,476 – a 33% hike.  The number of paid guardians rose from 68 to 80.

The highest-paid guardian was actually a corporate provider – The Arc of Bristol Country — whose total payments rose from $129,000 to $167,000 from Fiscal 2013 to 2016,  a 29% increase.  The payments to the Arc constituted more than 20%,  or one fifth, of the total payments to all guardians in Fiscal 2016.

The second highest-paid guardian in both years was Victor Sloan,  an attorney in Uxbridge. His payments from DDS rose from $43,150 in Fiscal 2013 to $53,288 in Fiscal 2016. Sloan’s website lists him a practicing attorney who does criminal defense cases and estate planning in addition to guardianships.

In email messages to Sloan and Michael Andrade, the CEO of the Arc of Bristol County, COFAR asked how many developmentally disabled clients they represented as guardians and how often they were able to visit those clients. In the case of the Arc, we asked how large their staff of guardians was and whether there was a maximum number of persons for whom each member of their staff was allowed to provide services.

Neither Sloan nor Andrade responded to our email or to a follow-up message left with each of them.

The DDS records show that payments to some guardians actually dropped between Fiscal 2013 and 2016, implying that they had lost wards.  However, other guardians saw large increases in their payments, which sometimes doubled or even tripled or more in that period.  For instance, payments to a Patrick Murray rose from $3,025 to $15,860 from  2013 to 2016 – a 424% increase.

In the Barr case (noted above), payments to the guardian, Dorothy Wallace, rose from $13,000 in Fiscal 2013 to $20,100 in Fiscal 2016 — a 55% increase.

The system appears to reward professional guardians with multiple clients

State regulations governing payments to guardians cap payments per client at $50 per hour, and cap the number of hours that guardians can spend serving individual clients at 24 hours per client per year [130 CMR 520.026 (E)(3)(d)]. Yet, the regulations do not appear to limit the number of clients an individual guardian can represent.

While the regulatory caps would appear to be intended to limit the amount of funding that professional guardians can receive per client, they also appear to provide an incentive to guardians to increase the number of clients they provide services to.

Based on those regulatory caps, we have calculated that Sloan was paid for providing guardianship services to at least 44 clients in Fiscal 2016.  The Arc of Bristol County would have had at least 139 clients in that year.  When guardians represent large numbers of clients, the ability of those guardians to act in their clients’ interest would appear to decline.

Moreover, the guardianships for which DDS has paid Sloan appear to be only a portion of the probate-court-related work that Sloan does.

Court records show that Sloan has been involved as a guardian, guardian ad litem, attorney, or as a “Rogers Monitor” for incapacitated persons in 118 cases in four separate counties between a seven-year period from Fiscal 2009 to 2015.  That includes 14 persons for whom he was appointed as a Rogers Monitor, 75 persons for whom he was appointed as an attorney, 19 cases in which he was appointed as a guardian ad litem, and six cases in which he was appointed as a guardian.

Those six cases in which Sloan was appointed as a guardian appear to be in addition to our estimated 44 cases in which Sloan has been paid by DDS to be a guardian.

An annual client care plan filed in Worcester Probate and Family Court by Sloan does appear to raise questions about the amount of time Sloan spent representing a DDS client from May 2016 to May 2017.

Sloan described the client in the care plan as mildly developmentally disabled and as residing in a group home.  Asked on the form to describe the “nature and frequency” of his visits with the client and his caregivers, Sloan stated only that he visited the client and his care givers “at least regularly, and have regular phone and email contact with his residential and day program staff.”

However, stating that he had visited his client “at least regularly” does not either specify the frequency of the visits nor describe their nature.

Sloan’s care plan report contained no critical remarks about the client’s care. He stated that the man’s needs “are being met in his current residential placement,” and that he was attending “an appropriate day program.”

DDS appears to have no centralized accounting system for paid guardians

In a May 10 Public Records law request, we asked DDS for information on the number of clients each paid guardian in its system had and the number of hours the guardians spent with their clients.  In a response later that month, a DDS assistant general counsel stated that providing information on the number of clients and hours spent by guardians would require DDS to collect invoices from “multiple DDS offices,” which would take at least 30 hours of “search and collection time” for each of four regional offices. At a cost of $25 per hour, that would cost us at least $3,000, the assistant general counsel’s letter said.

In a subsequent letter sent to us in June, the assistant general counsel stated that it would take an estimated 14 hours of staff time to identify the invoices submitted in Fiscal 2016 from just one guardianship entity — the Arc of Bristol County.

The apparent difficulty that DDS has in locating invoices for payment from guardians in its system raises questions about the adequacy of its internal financial controls, in our view. The DDS central office does not even keep a record of the number of clients each of its guardians represents, according to the assistant general counsel’s May letter.

PriceWaterhouseCoopers notes the importance of centralized, or at least standardized internal controls in large nonprofit institutions such as colleges and universities. We believe a large public agency such as DDS should also have a centralized internal control system, and DDS may lack that with regard to the guardians it employs.

No response from the CPCS

On May 10, we also filed a request with the Committee for Public Counsel Services (CPCS) for a list of attorneys who are selected for appointment to represent clients of the DDS who are subject to guardianship, from Fiscal Year 2013 to the present.

As part of our information request, we asked for a list of the total annual payments made the attorneys from Fiscal 2013 to the present, and the total hours spent each year by those attorneys representing and visiting their clients.

We did not receive a response from the CPCS to our information request. We contacted the state Supervisor of Public Records with regard to the matter and were told that the CPCS is considered to be a part of the judicial branch of state government, which is not subject to the Public Records law.

DDS/Probate system needs reform

As noted, we see a potential conflict of interest in allowing DDS to recommend and pay guardians to represent people in the agency’s care.  Along those lines, we are concerned that DDS has in a number of cases recommended attorneys, corporate providers, and other unrelated parties as guardians of individuals over the objections of family members of the individuals.

Also, in light of the increasing amounts paid to guardians by DDS, we are concerned that there is a potential for inadequate representation when paid guardians have large numbers of clients. Yet the payment system for guardians, in particular, appears to encourage those professional guardians to take on more and more clients.

We are also concerned that the system encourages DDS-paid guardians and CPCS attorneys to side together against the interests and wishes of families and individuals caught up in that system.

We think reform of the DDS/probate system is sorely needed, particularly with regard to payment of guardians and other financial practices. Those reforms should make the system more responsive to families, more transparent, and more accountable.

A public guardian may be the answer to many of these issues and problems, but, as noted, we think the public guardian should be just that — public. In the meantime, we urge the Judiciary Committee to finally vote to approve H. 887, which would boost the rights of families in the system by requiring probate judges to presume parents to be suitable guardians.

We will look further into these issues as we advocate for reform of the DDS/probate system.

 

Isolation of developmentally disabled woman continues after more than a year and a half

July 5, 2017 2 comments

It has been a year and seven months since David Barr and his daughter, Ashley, were last informed by the Department of Developmental Services of the whereabouts of David’s other daughter, a young woman with a developmental disability and mental illness.

The 29-year-old woman, whose name is being withheld for privacy reasons, is being kept in an undisclosed residence. All contact with her by her father and sister was cut off for unclear reasons by a DDS-paid guardian in November of 2015.

Although Dorothy Wallace, the DDS guardian, said in August 2015 that her goal was to allow the woman to have family contact, it still hasn’t happened for reasons that have never been revealed to David or Ashley. For unknown reasons, the only family member who has been allowed to visit the woman is an aunt who has apparently agreed not to reveal the woman’s location to the woman’s father or sister.

In an email last week, Ashley Barr told COFAR that her father has personally filed in the Essex County Probate and Family Court to intervene in the case and to seek permission to visit his daughter. But to date, he has not heard from the court.

The probate court has not issued any orders barring visitation with the woman. The denial of virtually all family contact appears to be a decision of the woman’s guardian and possibly DDS.

The Barrs have been unable to afford the cost of hiring a lawyer to pursue their case in probate court. As we have reported in another case, it is extremely difficult to prevail in any probate court proceeding in Massachusetts if you are not a legal guardian or appear without a lawyer.

David and Ashley have contacted their local state legislators, but have gotten little or no help from them. COFAR has attempted to intervene with mainstream media outlets and the legislators in support of visitation for David and Ashley, also to no avail.

Ashley and David Barr

David and Ashley Barr

As we reported in January,  the Boston-based Disability Law Center temporarily intervened in the case that month to ask a state-appointed attorney who is representing the woman to support family visits if the woman wished that. However, nothing apparently resulted from that effort.

The attorney, Melissa Coury Cote, told COFAR in March that she would not support court permission for visits to the woman by David or Ashley Barr, despite the DLC’s request.  She provided no reason to us 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 that her sister recently called her father on two occasions and said she missed her family and wanted to see them. The calls were apparently unauthorized. Ashley and David don’t know whose phone the woman used to contact them. They are concerned the woman may have gotten in trouble for making the calls.

Coury Cote had previously been appointed by the state Committee for Public Counsel Services (CPCS) to represent the woman on guardianship matters.  Under state probate law, incapacitated adults are entitled to free legal representation although their family members are not entitled to that.

COFAR has reported on a number of cases in which DDS-paid guardians have imposed severe restrictions on family contact with persons in the DDS/probate court system; but the Barr case may be the most extreme of those cases in that in none of the other cases has a DDS client been kept in isolation for such a long period of time, and in no other case has their family not been informed of their whereabouts.

COFAR first appealed to DDS Commissioner Elin Howe last October to seek permission for the Barrs to visit their family member, but Howe declined to do so.  In early April, COFAR sent an email to Howe, asking whether a timetable existed for ever reuniting Ashley and David with the woman. Howe did not respond to the query.

According to a transcript of an August 2015 court hearing on the case, Wallace and other DDS officials complained that David Barr was excessively combative in dealing with them and that David and Ashley became overly emotional when they had been allowed to visit the woman prior to the cutoff of all contact with her.

While being combative with DDS over the care provided to a loved one can occasionally result in restrictions placed on family contact, we know of no other case in which all such contact was removed for this long a period of time.

CPCS attorney was reportedly told to keep the family informed

John Byron, a friend of David Barr’s, who attended a probate court hearing on the case with David in March, said the probate court judge seemed to be moved when David said he had been prevented from any contact with the young woman and that no one was providing him with any information about her. According to Byron, the judge then told Attorney Coury Cote that she should communicate with the family and that she (the judge) didn’t want the family “kept in the dark” about the case.

Coury Cote told COFAR the judge had asked her during the hearing only to “take a few minutes to speak with father.” She denied that the judge had ordered her to keep David Barr informed about the case.  At one point, Coury Cote also said that the Barrs were “not entitled to information” about their family member’s whereabouts.

We believe, however, that in light of a Supreme Judicial Court ruling last year involving the guardianship of a woman known as B.V.G. , David and Ashley Barr should be considered by the probate court to be “interested persons” in the welfare of their family member. As such, they are entitled to information about her whereabouts and to be afforded visitation and other rights.

CPCS declines to review the attorney’s conduct

In March, we appealed to Mark Larsen, director of mental health litigation with the CPCS, asking for an investigation of Coury Cote’s conduct in the case. Larsen responded within two days of our appeal to state that the attorney had no obligation “to follow your directions, those of your client (apparently Ashley and David Barr) or of the DLC. Her only obligation is to her client and her client’s wishes.” He stated that “if the family wants a change in visitation, they should consult counsel of their choosing.”

For the record, neither David nor Ashley Barr are clients of COFAR. COFAR is advocating on behalf of them, but our organization does not charge for such advocacy.  Our funding comes strictly from donations made by affiliated organizations and from families.

Larsen also stated that it “appears” that Coury Cote “consulted with her client” in the case.

I wrote back to Larsen to clarify that I had not suggested, or meant to suggest, that Coury Cote should follow our or the DLC’s directions, but that it appeared to us that she “may not have fully ascertained the wishes of her client.” I also stated that Larsen’s comments implied that he did not know for a fact that the Coury Cote had consulted with her client, and that he was only assuming that to be the case.

I noted further that while the CPCS’s Assigned Counsel Manual states that an attorney should “act as a zealous advocate for the client,” the manual also states the attorney should insure “that proper procedures are followed and that the client’s interests are well represented” (my emphasis).

Larsen emailed back a two-sentence reply, badly misspelling my name and saying he had nothing to add to his prior response.

It is frustrating to us, although perhaps not surprising, that the DDS/probate court system seems so often to function against the interests of individuals and families caught up in it. One key reason for this appears to be that there is little or no accountability when professionals in the system act contrary to the interests of people who are powerless and vulnerable.

We always thought the role of legislators and the press was to represent the powerless in society. I think we’re all learning that is no longer the case.

We can only hope that when the Barrs finally do get their day in court, the judge will acknowledge the rights they have been denied and will consider the apparent wish of the young woman involved to see her family again.

In the meantime, we would urge people to call either the governor’s office (617-725-4005) or the DDS commissioner’s office (617-727-5608), and ask them to re-establish family contact in this case. If you do so, please let us know about it.

Disability Law Center aids woman who has been kept away from father and sister by DDS

January 30, 2017 1 comment

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.