COFAR blog

Guardianship of persons with developmental disabilities is under fire in Massachusetts and elsewhere, and families could see their advocacy rights eroded as a result.

One prominent threat to guardianship appears to be embodied in a 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, friends, and corporate service providers, according to the Center for Public Representation, which is pushing for SDM in Massachusetts. 

There are some promising aspects to SDM, but a number of concerning aspects as well.

To the extent that it can or does replace irresponsible or uncaring guardians with supportive teams, SDM would appear to have a potential to improve the lives of many people.

On the concerning side, SDM does not appear to be well designed for people with severe levels of disability.  Those people are most in need of the protections of guardianship; yet, many SDM advocates paint guardianship with a broad, negative brush and don’t appear to acknowledge the value that family members, in particular, bring as guardians to the lives of their loved ones.

As Jill Barker notes in the Michigan-based DD News Blog:

Many advocates for SDM state explicitly that their goal is to eliminate guardianship. Others state that this is not what they are trying to do, but their words and actions show that they intend to make guardianship as difficult to obtain as possible.

Moreover, many of those SDM advocates appear to be from the same groups that have long opposed critically important congregate-care options for the developmentally disabled, and their language in support of SDM is similar to their longstanding ideological language in opposition to congregate care.  In particular, they make the same questionable charges about guardianship that they have about congregate care — that guardianship leads to “segregation,” and that all persons under guardianship are prevented from “reaching their potential.”

We believe that like congregate care, guardianship is a necessary part of the total spectrum of care, particularly for people with the most severe levels of developmental disability, and that those choices and options shouldn’t be taken away from disabled individuals and their families.

As a result, we counsel parents of developmentally disabled children to consider obtaining guardianship rights when their child reaches the age of 18.  Without such rights, family members are likely to have virtually no say in the decisions that are made by providers and the Department of Developmental Services with regard to their loved ones with developmental disabilities.

In a position paper on SDM, the VOR, a national advocacy organization for people with developmental disabilities and a COFAR affiliate, contends that SDM “could weaken protections for those who are the most vulnerable, the very people for whom guardianship laws were originally written.”  The VOR adds that SDM threatens “to remove an individual who lacks the capacity to make his or her own decisions from the protection of the court and ongoing evaluation.”

Similar groups and similar language against guardianship and congregate care

The CPR and similar advocacy organizations in other states favor reducing residential options and choices, particularly when it comes to congregate care, and they use similar arguments to support the replacement of guardianship with SDM.

The CPR has supported or been involved in numerous lawsuits to close developmental centers over the objections of families of residents. Their argument has been that clinical experts know better than family members about what is in the best interest of their loved ones. Those advocates also support the dismantling of sheltered workshops and the privatization of residential services for the developmentally disabled.

The CPR is now making similar questionable claims against guardianship and in favor of SDM. In a PowerPoint presentation delivered in 2014, the CPR maintained that guardianship results in “civil death” for developmentally disabled persons, and that a key principle of SDM is that “people are not inherently incompetent.”

That latter claim, which has also been made in opposition to congregate care, seems absurd to us if it means that no individual can be found to be incompetent.  Laws in Massachusetts and most other states require that people be found incompetent by courts in order to be considered for guardianship. If SDM advocates believe that no one is truly incompetent, then they must believe court rulings around the country involving thousands upon thousands of people were wrong. We don’t believe it’s possible that all, or even most, of those decisions were wrong.

Nevertheless, in a law journal article, SDM-proponent Leslie Salzman includes the following statement, which includes no citation, in a footnote:

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)

The CPR does acknowledge that some things about guardianship are good.  In the 2014 PowerPoint, the CPR states that guardianship “offers a form of protection and provides some safeguards against abuse,” and that guardianship “makes it clear who is the ‘decider.’”  But the CPR goes on to claim that guardianship results in a “loss of legal personhood” and a loss of civil rights such as the right to marry and vote.  And the CPR contends that guardianship leads to possible exploitation by the guardian.

We disagree with the CPR’s claims.  First, it does not appear to be true that a person under guardianship can’t vote. According to the Handbook for Massachusetts Guardians, which is published by the Massachusetts Guardianship Association, some incapacitated persons may have sufficient capacity to marry or vote.  In those cases, the guardian can seek the court’s approval for such actions.

Also, as the Massachusetts handbook notes, current state law provides a number of protections for persons under guardianship and encourages limited guardianships when possible.  Among the legal protections in place now is a requirement that guardians seek court authorization to make many major decisions for the incapacitated person – for example, admitting someone to a nursing facility for long-term care.  The guardianship handbook further advises guardians to act in the incapacitated person’s best interest at all times, to do what that person desires to do, and to visit them at least monthly.

While it’s true that guardians can potentially exploit incapacitated people in their care, we are not sure that exploitation is less likely with SDM.  If corporate providers, in particular, are on the SDM “network” teams, then there is a potential conflict of interest involved, since providers stand to make money by advocating for more services.

Barker points out in the DD News Blog that “guardianship abuse from family members can occur,” but she draws a crucial distinction — which SDM advocates appear to ignore — between the appointment of family members as guardians, and the appointment of attorneys, corporate entities and other professionals to that role.  Family members, Baker states, are far more likely to attend to the needs and wishes of their loved ones under guardianship than are corporate or state guardians “with dozens of wards.”

Barker, who is critical of the SDM movement, adds:

Although there are horrific stories about what can happen to people under guardianship, we rarely see stories about unpaid family guardians who defend their family members against agencies and individuals who, through neglect or the intentional desire to do harm or simply to save money, exploit vulnerable people with disabilities.

We’ve witnessed this type of family support in many, many cases, such as that of Stan McDonald, who stopped clinicians and providers from giving unnecessary and dangerous anti-psychotic medications to his son, Andy.

Confusing the causes of isolation

In the law journal article, Salzman brings up many of the same arguments against guardianship that the CPR and the providers have used against congregate care, including the segregation charge.  But she doesn’t appear to distinguish between degrees of intellectual or developmental disability.

For instance, Salzman states that when an incapacitated person loses their decision-making power to a guardian, they experience feelings of isolation and helplessness, which leads to a further loss in functional abilities in a “vicious cycle.” But while this might be true for relatively high-functioning persons, it is certainly less true for lower-functioning individuals.  And it incorrectly assumes that all guardians, including family members, act as dictators and don’t solicit or take into account their wards’ wishes.

Salzman also appears to identify the wrong causes of the isolation she refers to.  She argues that persons with developmental disabilities feel isolation due to guardianship and to living in large institutions. But we have found that the isolation felt by these individuals is not due to guardianship or living in institutions, but actually to living in community-based settings.

There is often little real community integration in these privatized settings despite their being characterized as community-based. Unfortunately, there are usually few if any other choices available to guardians among residential settings because so many congregate-care settings have now been shut down and because states like Massachusetts fail to inform people waiting for residential placements of either congregate-care or state-operated sites that remain.

The lack of congregate-care options combined with the privatization of residential care appear to have actually increased the isolation of both individuals with disabilities and their families. Family-supported networking organizations have disappeared as developmental centers have been shut down.  People with developmental disabilities are often trapped in group homes in which they are rarely taken out into the community.

In Connecticut, families have lately protested  the planned privatization of state-run group homes, with one family filing a lawsuit to preserve their current facilities.  There are huge amounts of money to be made in privatization, in particular, and families seem to get in the way of that process.

As we noted, SDM may well work for high-functioning people, but we believe there would nevertheless have to be strict controls on it. We think that means, at the least, that corporate providers should not be permitted on the SDM “network” teams.

For lower-functioning people, our concern is that even if family members enter into SDM voluntarily, they may not realize that their decision-making power may well be diluted under those circumstances. Why would a family member want to agree to be just one vote on a team when it comes to the care of a son, daughter, brother, or sister?  We are all for limited guardianships when appropriate, but that team approach doesn’t make sense to us unless it is clear that the family member has the final say in all decisions.

Rather than eliminating guardianship, it would seem we should continue to work to improve the system, particularly for incapacitated individuals and their families. One reform is to ensure that attorneys are appointed to represent all individuals under guardianship if it is requested.  Another is for the Legislature to finally pass Stan McDonald’s bill that presumes family members to be the most suitable guardians for their loved ones.