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The Britney Spears case is wrongly being used to attack guardianships of persons with developmental disabilities

September 7, 2021 7 comments

In a recent article published in CommonWealth magazine, we discuss the misguided use by many activists of Britney Spears’ controversial guardianship case to discredit guardianship arrangements in general.

As we point out in our article, guardianship is under attack, and the Britney Spears case is wrongly being used to imply that all guardianship arrangements are abusive or exploitative.

We think Spears’ experience is also being used to advocate for legislation that could make it more difficult for family members to become or remain as guardians of persons with intellectual and developmental disabilities (I/DD). In our experience, family members need to have guardianship to ensure they are consulted in the delivery of care and services to their loved ones.

But former Massachusetts Attorney General Scott Harshbarger and former Secretary of Elder Affairs Paul Lanzikos appear to be using the Spears case to push for bills that might limit those family guardianship rights. Citing Spears’ case, Harshbarger and Lanzikos have proposed legislation to create a Massachusetts Office of Adult Decisional Support Services (H.1898 and S.974).

The functions of the Office, as listed in the legislation, are vague; but Harshbarger’s and Lanzikos’s own statements in a separate piece in CommonWealth raise concerns for us about what their proposed Office might be tasked to do.

Harshbarger and Lanzikos wrote that the Office would “improve oversight and best-practices in guardianship and conservatorship, as well as support alternatives to guardianship—such as supported decision-making—statewide” (my emphasis). More about Supported Decision-Making in a moment.

We certainly agree that there are compelling questions as to why someone like Britney Spears remains under guardianship, also known in some states as conservatorship. She is a multi-talented singer, songwriter, dancer, and actress who appears to be involuntarily trapped under the guardianship of her father. She appears to be cognitively normal and capable of making her own life choices.

But not all guardianship arrangements are like Spears’ relationship with her father, and not all persons under guardianship are capable of making their own life choices. Yet that is one of a number of distinctions that appear to be lost or glossed over in Harshbarger’s and Lanzikos’s piece.

Harshbarger and Lanzikos aren’t the only ones using the Spears case in this manner. Activitists around the country and even some members of Congress are using Spears’ experience to attack guardianship.

Supported Decision-Making needs safeguards

Supported Decision-Making (SDM) is an arrangement in which 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, and living arrangements, and in other areas. SDM proponents maintain that guardianship unduly restricts the rights of disabled individuals to make those decisions.

We think SDM can hold promise for some high-functioning individuals; and we would support its adoption with adequate safeguards, particularly safeguards against the potential marginalization of family members.

The problem with proposed legislation to implement SDM in Massachusetts (H.272 and S.124) is that, as with earlier versions of the legislation, there appear to be few, if any, such safeguards in it. The bills still provide no standard for determining who might be eligible for SDM.

The SDM legislation continues to avoid the question whether everyone is really capable of making their own decisions in those very important areas. SDM proponents need to recognize that there are some individuals who do not have the cognitive skills necessary to make reasonable decisions. Those people need guardians – preferably guardians who are family members.

We are concerned that the creation of the Office of Adult Decisional Support Services may be a backdoor means of instituting SDM in Massachusetts as an “alternative” to guardianship.

As noted, the duties of the proposed Office of Adult Decisional Support Services are vague, and “decisional support services” are not even defined in the legislation. The Office would be tasked with “developing oversight and accountability procedures to prevent potential errors or abuses by decisional fiduciaries.”  We think better oversight and more accountability are needed in the probate system; but it is unclear what the proposed Office would consider to be abuses.

We have identified what we think are abuses, including the incentives the probate court system in Massachusetts gives to professional guardians to acquire as many wards as possible while doing little to represent them. This raises another distinction that Harshbarger and Lanzikos appear to have failed to make.

Abuses primarily appear to lie with professional guardians

Harshbarger’s and Lanzikos wrote that they are trying “to raise public awareness around guardianship and conservatorship practices that were brought to light by the Spears case, and to provide systems to protect the rights of individuals from the risks of overreaching, or in isolated cases, outright abuse (by) guardians or conservators.”

In our experience, the overreaching that they refer to applies much more commonly to professionals hired to serve as guardians than it does to family members.

Professional guardians of persons with development disabilities are paid by the state Department of Developmental Services (DDS) — a situation that appears to interfere with the guardians’ legal obligation to act in the best interest of their disabled clients. Family members are not paid for serving as guardians of their loved ones.

We have found that professional guardians of disabled clients often have relatively few interactions with their clients, and frequently side with DDS when family members have gotten into disputes with the agency over the care of those clients.

Need for family rights bill

We think reform of the probate system in Massachusetts is needed, and a first step would be passage of H.1733, a bill which would require that probate court judges consider parents of individuals in the DDS system to be suitable guardians for them. In too many instances, DDS officials, clinicians, providers, and probate judges dismiss families as uninformed or meddlesome.

But we have seen time after time that it is family members who have their loved ones’ best interest at heart. Family members are often the ones most intimately knowledgeable about their physical and emotional conditions.

A serious discussion of guardianship reform is sorely needed. But, as we noted in our article, the proposal from Harshbarger and Lanzikos appears to be one-sided. Basing their proposal on the Britney Spears case is a key indication of that.

Stan McDonald, who fought for guardianship and visits from his son, dies

Stan McDonald, who fought for many years for guardianship of his son, Andy, and championed a guardianship rights bill for parents of persons with developmental disabilities, died on May 6, his wife Ellen announced. He was 85.

We have written about Stan and Ellen’s attempts to overturn a lifetime ban imposed in 2006 by a probate court judge on visits by Andy to his hometown in Sherborn. Andy, who is now 53, is intellectually disabled, and has lived since 1993 in a group home funded by the Department of Developmental Services (DDS).

Ellen said this morning that despite the ban, Andy will be allowed to attend his father’s funeral in Sherborn. 

Stan, Andy, and Ellen in 2012

In 1986, Stan and his previous wife agreed to the appointment of a guardian for Andy as part of the settlement of a longstanding custody battle over him. Stan was unsuccessful in subsequent years in regaining his guardianship, even though his former wife, local legislators, and other supporters publicly expressed support for that.

In light of his experience, Stan waged a long-term battle for a bill in the state Legislature that would require that probate court judges consider parents as suitable guardians of persons with intellectual and developmental disabilities. COFAR is continuing to advocate for passage of the legislation, now H.1733.

In his 2006 ruling barring Andy from ever returning to Sherborn, former Probate Judge Edward Rockett stated that Andy had been arrested in 1990 for the sexual assault in his hometown, and was too dangerous to be allowed to ever return there. But it was apparently not the case that Andy was ever arrested or charged with a crime of sexual assault, according to Stan and Ellen.  Their claim appears to be backed up by the district court record and a subsequent police report.

The district court record states that Andy was arrested in Sherborn in May of 1990 for threatening an unidentified person during a telephone call.  The nature of the threats was not disclosed.  In July of that year, he was charged with disturbing the peace in downtown Sherborn, according to a police department report. That same day, he was charged with assault after he punched Ellen, his stepmother.  Stan and Ellen said the punch was accidental.

Stan and Ellen maintained that Andy has not exhibited any significant behavioral problems in the past decade. He has been taken on community outings to many places other than his home without any behavioral incidents, according to his yearly clinical care plans.  He was described in one care plan as “kind and friendly to others,” and as “a polite man.”

While an appeals court upheld Rocket’s decision in 2009, barring Andy from returning to Sherborn, the appeals court stated in a footnote that “some of the fact findings adopted by the judge (Rockett) were not supported by the evidence…” The footnote specifically stated, with regard to Rockett’s claims about the arrest for sexual assault, that “the specific facts (of the incidents in Sherborn) and the charges are not clear from the record.”

We have long called for an independent clinical evaluation of Andy. Such an evaluation was also urged by the McDonalds’ local legislators.

Stan and Ellen maintained that Andy is not dangerous and should be allowed supervised visits home.

Successful advocacy for Andy

While Stan never was granted guardianship of Andy, he was successful in advocating for better care for Andy in many instances. That advocacy included a successful effort to get clinicians to discontinue administering Stelazine, an anti-psychotic drug, to Andy. The drug had caused him to develop Tardive Dyskinesia, a disorder  resulting in involuntary, repetitive body movements.

Supporters urge restoration of Stan McDonald’s guardianship of Andy

In 2013, State Representative David Linsky, the main sponsor of Stan’s guardianship bill over the years, wrote a letter in support of Stan’s appointment as Andy’s guardian. Linsky noted that he had known Stan for 14 years and “can personally attest that he is deeply committed to his son Andy’s care and only wants the best for him.”

John Carroll, a former residential counselor to Andy at the Cardinal Cushing School, also wrote to DDS that year to say that he had frequently observed visits to Andy by Stan and Ellen, and that “I have seen theirs to be a bond that is unique and irreplaceable. Stanley’s and Ellen’s dedication to Andy’s care and treatment in all circumstances leaves no question in my mind that Stanley McDonald is the sole individual with the knowledge, experience, and love, deserving to have responsibility for major decisions in Andy’s life as guardian.”

And Stefan Grotz, the original court-appointed guardian in the case, wrote in 2002, after he had stepped down from that role, that “never have I met a more passionate advocate for a son than Stanley McDonald.” He strongly recommended to the court that McDonald be appointed as his son’s guardian. 

Guardianship bill

H.1733, which Stan advocated for continuously, would require probate court judges to presume that the parents of developmentally disabled persons, or third parties designated by the parents, are suitable as guardians for those individuals.

The bill would level the playing field in the DDS–probate court system, which often appears biased against families. As we have reported, probate judges frequently appoint attorneys as guardians of developmentally disabled persons, passing over their family members.

If they don’t have guardianship, family members can find themselves with virtually no rights or input into the care of their loved ones, and may even be excluded from contact with them.

In Stan’s memory, we would urge people to contact the Judiciary Committee, and urge the committee to act favorably on H.1733. The co-chairs are Senator James Eldridge (phone: 617- 722-1120; email: James.Eldridge@masenate.gov ) and Representative Michael Day (phone: 617-722-2396; email Michael.Day@mahouse.gov).

DDS seeks to remove mother as co-guardian of her son after she saves his life

November 12, 2020 51 comments

Cindy Alemesis’ son, Nicholas, nearly died in December 2018 after staff in his group home in Dracut failed to take him for a scheduled morning ultrasound appointment, which would have shown that his brain shunt was leaking spinal fluid.

Just hours after the scheduled time for the appointment, Cindy first noticed how ill Nick appeared.

Cindy was with Nick following an evening church service, and made sure he was taken to a hospital. There, doctors found that the shunt was leaking spinal fluid into his body, and that the fluid had begun to build up in his stomach. Cindy didn’t know at the time that the ultrasound appointment had been missed.

Nick got sepsis from the leaked fluid, and was in Mass. General Hospital for eight months, during which he underwent multiple brain operations and other procedures. Cindy was at his bedside for much of that time.

Nick, who is 28, has a mild intellectual disability, and was born with hydrocephalus, a condition in which there is excess spinal fluid in his brain. He has a shunt in his brain that drains the fluid.

Nick Alemesis and his mother, Cindy

Since Nick’s recovery and release from the hospital in July 2019, Cindy has regularly complained that staff in the group home, run by LifeLinks, a provider to the Department of Developmental Services (DDS), have continued to miss medical and dental appointments for him.

But rather than addressing those concerns, DDS is now moving to remove Cindy as her son’s co-guardian, stating only in a court document filed last month that she has made decisions that were not in Nick’s best interest. The DDS filing in Middlesex Probate Court does not provide any specifics as to what decisions those might have been.

Cindy said DDS has done little or nothing to address the concerns she has raised about Nick’s care in the group home.  She said problems, in addition to the missed appointments, include sharp restrictions placed on her contact with Nick for reasons that have not been explained to her.

Cindy said the other co-guardian for Nick, who is apparently paid by DDS, appears to live in Florida, and has been uninvolved in Nick’s care. Cindy sought unsuccessfully to remove that co-guardian last year in probate court.

It isn’t clear whether the current move by DDS to remove Cindy as co-guardian is in retaliation for her attempt to remove the other co-guardian. It is also unclear whether DDS wants to make that individual Nick’s sole guardian.

I emailed a request for comment on this matter on Tuesday (November 10) to DDS Commissioner Jane Ryder, and to Barbara Green Whitbeck, DDS assistant general counsel. Whitbeck signed the Department’s petition to the probate court to remove Cindy as co-guardian. Neither Ryder nor Whitbeck has yet responded to my request for comment.

Support from church pastor 

Keith Phemister is pastor of the Lighthouse Baptist Church in Hudson, NH, which Cindy, her husband, and Nick have attended for the past 20 years.

Phemister strongly supports Cindy’s remaining as Nick’s co-guardian, and said he is baffled by DDS’s claim that she hasn’t made decisions in his best interest.

Phemister said Cindy can be abrasive at times, and that he has spoken to her about it. But he maintains her abrasiveness is because she feels that her son is being mistreated, and that she sometimes will speak her mind without thinking about how others might react.

“I know she (Cindy) is fighting for her son,” Phemister said. “It’s possible they (DDS) see that as a negative, but she loves her son and is fighting for him, and they’re holding that against her.”

Phemister said that on the evening Nick got ill in December 2018, Nick had attended Wednesday church services with Cindy. The church has a van that picked Cindy up from her home in Lowell, and picked up Nick from his group home in Dracut, and took them to the church in Hudson, NH. After the service, Nick started feeling ill, and was sweating and vomiting on the van ride back to Dracut.

Phemister said Cindy was so concerned, she had them detour and take Nick to Lowell General Hospital. Nick was later transferred to Mass. General. Phemister said the medical staff apparently told Cindy that Nick would have died had he not been brought to the hospital that day.

Cindy at Nick’s bedside in the hospital

Doctor stipulates to missed ultrasound appointment

In a written statement, Zaheer Ahmed, a doctor of internal medicine based in Lowell, said he examined Nick on December 17, 2018, two days before Nick fell ill and was taken to Lowell General.

During the December 17 visit, Ahmed scheduled an ultrasound of Nick’s abdomen for two days later — December 19 at 10 a.m.

Ahmed’s statement added that “the patient and care worker were both informed of (the) appointment before leaving the office on that date.”  However, the doctor’s statement says Nick didn’t show up for the December 19 appointment, and the ultrasound had to be rescheduled for December 21.

However, by then it was too late. Nick fell ill during the church service in the evening of December 19. During the ride back in the van, Nick was first taken on Cindy’s insistence to Lowell General Hospital. He was transferred a few hours later to Mass. General.

A document from Mass. General shows Nick was admitted on December 20 with fever, nausea, vomiting, lethargy, and abdominal pain. That was the start of an eight-month stay in the hospital.

At Mass. General, Nick had 13 operations to remove and replace the shunt in his brain, and seven procedures on his throat due to an infection caused by his trach tube, Cindy said.

According to the Mass. General document, Nick also underwent a subsequent operation for a perforated bowel caused by a piece of the infected shunt.

DDS and provider apparently failed to report hospitalization

Given Dr. Ahmed’s written statement regarding the missed ultrasound appointment, the LifeLinks staff were knowledgeable and responsible for bringing Nick to the appointment, and failed to do so – a potentially negligent act that could well have cost him his life.

Cindy said she immediately reported those circumstances to officials at DDS. It appears, however, that neither the provider nor DDS reported the matter to the Disabled Persons Protection Commission (DPPC), as required by the DPPC’s enabling statute and regulations. As a result, DPPC never investigated the matter or authorized DDS to investigate it.

In response to a query from Cindy earlier this month, DPPC responded that it had received no complaint report involving Nick’s hospitalization until Cindy herself filed a complaint about it last month.

The DPPC’s statute and regulations state that “mandated reporters” must report any situation resulting in a serious physical injury if there is reasonable cause to believe it was due to abuse or neglect.

Missed appointments continue

Cindy said she has been frustrated that the group home staff continued to miss appointments for Nick, even after his release from the hospital in July 2019.

A written statement from Jonathan Moray, a doctor with New England Neurological Associates of Lawrence, stated, for instance, that Nick missed an appointment on November 27, 2019, just a few months after he got out of the hospital.

A written statement last year from Tufts Dental School states that they could not schedule any further dental appointments for Nick “due to lack of updated medical paperwork.” That paperwork is required to be updated yearly, and nothing was on file since 2017, the Tufts letter stated.

Cindy said Nick’s teeth are still damaged from a trach tube that was inserted during his hospitalization.

DPPC screens out recent complaint

Unable to get an adequate resolution to her concerns about the missed appointments, Cindy filed the complaint last month with DPPC. But the agency screened out that complaint as ineligible for an abuse investigation, and instead referred it to DDS for an “administrative review.”

The DPPC intake form states that Cindy’s complaint was screened out because Nick had not suffered a serious physical or emotional injury. However, that same DPPC intake report acknowledged that one of the alleged missed appointments had led to Nick’s hospitalization for eight months.

DDS attorney threatened to take away co-guardianship in 2019

Cindy said Barbara Green Whitbeck, the DDS assistant general counsel, first threatened to take away her co-guardianship of Nick last year, and accused Cindy at the time of trying to improperly feed Nick while he was hospitalized. Cindy denied that she ever fed Nick improperly.

Whitbeck has represented DDS in the ongoing probate court fight in which Cindy had sought to remove the DDS co-guardian. Cindy said that when she informed Whitbeck during a private meeting of her concerns about the other co-guardian and the alleged negligence of the provider, Whitbeck dismissed those concerns.

“She (Whitbeck) said the (LifeLinks) staff did nothing wrong,” Cindy said. “Then she accused me of feeding my son and keeping him sick in (Mass. General).” Cindy said she got up at that point to leave the meeting, and Whitbeck threatened her, saying if she left, she would lose her co-guardianship.

Cindy said the charge of improperly feeding Nick was untrue and “came out of left field.”

Cindy said that while she was at Nick’s bedside in the hospital, the nurses trained her in how to suction his trach tube and how to put his medication, which was crushed up in a type of pudding, into his G-tube. His trach had to be sanctioned every 20 minutes or so, she said.

Cindy feels Nick is continuing to be isolated in his group home

Cindy said Nick’s phone was recently taken away from him, and that he has had few social interactions since March. Before that, his church was his main source of social interaction.

Currently, Cindy’s contact with her son is restricted by the group home to once a week. Her phone contact with him is also apparently highly restricted. She was told in March that no in-house visits were permitted because of the COVID crisis, but said no one informed her that in-house visits were restored as of early October under revised DDS guidelines.

In an email on Oct. 8, Cindy complained to Nick’s service coordinator that the group home staff told her not to call Nick, and didn’t give her a reason for that. She said she sometimes goes for three to five days without hearing from him.

Cindy said those restrictions on contact have made it harder for her to keep track of the care Nick is receiving, and to monitor his medical needs. She said that when she called the house earlier this week to ask permission to visit her son, a staff member hung up on her.

Case fits a pattern

Unfortunately, this case fits a pattern we have seen in which DDS and sometimes providers themselves have taken a variety of punitive and retaliatory actions against family members and guardians when they are seen as troublesome or meddlesome in advocating for adequate care for their loved ones in the system.

Guardians, parents, and other family members can suddenly find their contact with their loved ones restricted or banned entirely, and their guardianship placed in jeopardy. They are frequently either ignored or threatened with punitive actions if they don’t agree to accept the providers’ decisions on care and services without complaint. (Examples of this are here, here, here, here, here, here, here, here, here, and here.)

Without an attorney, family members and guardians can find themselves badly outmatched and outgunned by DDS’s extensive legal resources, particularly in probate court. The system is entirely unfair and designed to bully families into submission.

It shouldn’t have to be this way. We strongly hope that Cindy prevails in her battle to keep her guardianship, and will do everything we can to help her. But it will likely be an uphill battle.

What you can do

We urge people to call DDS at 617-727-5608 and ask to leave a message with the commissioner in support of Cindy remaining as her son’s co-guardian.

Also, please call your local state legislators (you can find them here), particularly if you live in the Lowell and Dracut areas, and ask them to contact DDS on her behalf. And please share this post on Facebook and other social media.

Supported Decision Making bill needs clarity and safeguards

February 21, 2019 6 comments

We’ve recently expressed concerns about “Supported Decision Making” (SDM), a growing movement to restrict guardianships of persons with developmental disabilities and replace those guardians with “networks” of more informal advisors.

In that vein, a bill to promote SDM in Massachusetts (HD.666 in the House and SD.843 in the Senate) does little to alleviate our concerns.

We think SDM can hold promise for some high-functioning individuals, and we would support its adoption with adequate safeguards, particularly safeguards against the potential marginalization of family members.

The problem with the bill is that there appear to be few, if any, such safeguards in it, and the bill provides no standard for determining who might be eligible for an SDM arrangement.

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. SDM proponents maintain that guardianship unduly restricts the rights of disabled individuals to make those decisions.

But the bill skirts the question whether everyone is really capable of making their own decisions in those very important areas. The bill states that, “with support, many people with disabilities can make their own decisions…” (our emphasis). That statement actually says very little.

What the bill does state explicitly is that under SDM, the developmentally disabled individual is the “decision maker” regarding their services and their financial and legal affairs.

But can someone with a profound intellectual disability, for instance, be considered capable of making their own decisions even with assistance from an SDM team? As one public advocacy organization put it in relation to SDM, is it possible for anyone to make their own decisions “if they do not have…an appreciation of the significance of the decision they are making or a reasonably consistent set of values?” 

The bill simply doesn’t address those questions. As a result, it seems possible the assumption underlying the bill is that yes, many individuals are capable of making these decisions even if they have “significantly sub-average intellectual functioning,” lack the ability to communicate, and lack practical living and conceptual skills.

SDM proponents need to recognize that there are some individuals who do not have the cognitive skills necessary to make reasonable decisions. Those people need guardians.

It’s not sufficient to insert a vague statement into proposed legislation that “many people” are capable of making their own decisions. Where does that capability begin or end? What the bill needs to specify is a threshold level of cognitive ability, determined through research, above which SDM would be permissible and below which it wouldn’t.

The problem is that many SDM proponents refuse to recognize that such a threshold level even exists. The American Bar Association, for instance, rejects the use of a clinical standard or diagnosis of cognitive ability in determining whether an individual is capable of making their own decisions.

Little or no protection from conflicts of interest or exploitation

There is also nothing in the language of the bill to prevent human services providers from being placed on the SDM teams — a situation that would seem to set up a potential conflict of interest.

We have seen many cases, for instance, in which family members have made allegations of poor care or conditions in group homes, and the providers have not only ignored the families’ concerns, but have, in some cases, retaliated against the families. In too many of those cases, DDS has taken the side of the providers.

It’s not hard, in instances like that, to imagine the outcome if a representative of the provider and of DDS were on the individual’s SDM team. The family member would be consistently “outvoted” on decisions about the person’s care.

There is, moreover, no provision in the bill for preventing the exploitation of developmentally disabled persons other than a provision that anyone who has reason to believe that someone is being exploited can report that to the Disabled Persons Protection Commission (DPPC). There is not a requirement, however, that the DPPC actually investigate such a complaint or that the DPPC not refer the complaint to another agency such as the Department of Developmental Services for investigation.

There is also no provision in the bill that would provide for regular auditing or other oversight of SDM agreements.

In addition, there is a provision in the bill that appears to offer SDM as an alternative to guardianship even for children. The bill appears to imply that even children with intellectual disabilities would be considered eligible to make their own financial and legal decisions.  We’re not sure that even children of normal cognitive ability have that legal right under most circumstances.

Unfortunately, it appears to us that many proponents of the SDM movement do not want to adopt safeguards or standards, possibly because that process could lead to debate and disagreement that might slow the SDM movement down. We think taking the time to resolve disagreements and adopting standards would ultimately be the best way forward for SDM and for the disabled individuals it is intended to help.

 

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.

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 22 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.

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