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Posts Tagged ‘Supported Decision Making’

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.