COFAR blog

As we have chronicled a number of times, family members can get shut out of the process when their loved ones with developmental disabilities enter the state’s system of residential care.

This is particularly the case when family members lose their legal status as guardians of disabled persons. That, as we have seen, can happen for reasons that are not always fair or just.

That’s why we strongly support a bill (H. 1459) now before the state Legislature that would require probate court judges to give more consideration than they now do to the appointment of family members as guardians of incapacitated persons.

The bill, which has been filed for years by Representative David Linsky, has never made it out of committee. We understand, though, that the Massachusetts Developmental Disabilities Council, which advises the state on issues of concern to the developmentally disabled, has put this bill on their priority list for passage this year.

The bill states that the spouse, parent or parents or their designees of an incapacitated individual should be presumed to be suitable guardians unless competent evidence is introduced to the contrary.

Obtaining guardianship when a developmentally disabled person reaches the age of 18 is essential in participating in the care of that person. Guardians have legal rights to participate in individual support planning, a key element in the care of developmentally disabled persons, and to make other decisions that affect their wards’ services and well-being. Even the parents of a developmentally disabled person over 18 will find they have virtually no say in that person’s care if someone else is appointed as his or her guardian.

But the appointment by probate court judges of guardians of developmentally disabled persons is often haphazard. In many of those cases, judges appoint either attorneys or corporate human services provider organizations as guardians, and those attorneys or providers may have no connection to the persons who need their representation.

Attorneys, corporate providers, and others who are appointed to guardianships of developmentally disabled persons are generally paid for those services by DDS.  According to DDS records, eleven of the 20 highest-paid guardians by the Department in Fiscal Year 2014 were either corporate providers or attorneys.

There seems to be a view among at least some judges and within DDS that corporate providers or attorneys make more suitable guardians than do family members, particularly if those family members are seen as aggressive or contentious in their relationships with DDS. We think this dismissal of families is wrong and has caused a lot of needless suffering among families, not to mention hindering adequate care.

Moreover, the view that the so-called experts and not family members know what is best for disabled persons appears to be at odds with the federal Developmental Disabilities Assistance and Bill of Rights Act, which states that family members of developmentally disabled individuals shall be the “primary decision-makers” in the care of such persons.

It would seem that too few people in DDS or the probate court system in Massachusetts are familiar with the DD Assistance and Bill of Rights Act.

In 2012, DDS petitioned a probate judge to remove Patricia Feeley as her son’s guardian because Feeley would not agree to a Department plan to place her son in a residential care setting without 24-hour nursing.  DDS agreed to dismiss its petition a year later, but only after the Department had proposed to appoint a Woburn-based attorney, who had never met Feeley’s son, as his guardian.

In 2010, Norfolk County Probate Court Judge George Phelan dismissed the entire Duzan family as unsuitable to continue as guardians for Sara Duzan, a young woman with a developmental disability who had been repeatedly abused with unnecessary restraints in a series of provider-operated residential care settings.

In his order, Phelan discounted the family’s claims that Sara was being abused, and contended the family itself had “demonstrated through a variety of encounters their vacillation, indecisiveness, and inability to work with others.” In the place of Sara’s family, Phelan appointed  the executive director of the Arc of Greater Fall River, a DDS corporate provider, as her guardian.

Phelan’s order set the stage for the eventual cutoff of all contact between the family and Sara for months, and forced them into an expensive and still ongoing legal battle over her custody. But vacillation, indecisiveness, and even the inability to work with others, even if that were the case, do not seem to us to be sufficient reasons to deny an entire family the right to guardianship of a loved one.

In a third case, Stan McDonald voluntarily relinquished his guardianship nearly 30 years ago of his intellectually disabled son, Andy, as part of a custody battle with his former wife.  What followed were years, with few exceptions, of poor decision-making regarding Andy’s care by a number of court-appointed guardians.

The idea for H. 1459 came from Stan McDonald, who has still been unable to regain his guardianship of Andy, and has had to watch helplessly as Andy’s emotional needs have been ignored or neglected.  Andy McDonald’s current court-appointed guardian has had as many as 100 wards at one time.  The provider executive director appointed as guardian of Sara Duzan had 24 other wards at the time, according to court records.

The current probate law does state that in appointing guardians, the court should consider, in order of priority, a spouse, then a parent, and then “anyone else the court deems appropriate.” But a judge is not obligated to give more weight to a parent than to anyone else he or she deems appropriate.

In fact, the current probate law goes on to state that: “The court, acting in the best interest of the incapacitated person, may pass over a person having priority and appoint a person having a lower priority or no priority.”  That provision gives probate judges carte blanche to bypass the express wishes of parents and other family members.  H. 1459 would remove that provision.

There are a number of additional reasons to support of H. 1459:

• It would lower caseloads for attorneys who are not able to advocate effectively for the often large numbers of incapacitated persons for whom they are responsible.  It would also reduce the cost to taxpayers in paying these attorneys.

• H. 1459 would also reduce the use of scarce court resources expended on families disputing the appointments of non-family members to be guardians of their loved ones.

By itself, H. 1459 is just one of a number of measures that are needed to reform the dysfunctional DDS/probate court system of care for people with developmental disabilities. Other measures are needed as well.  For instance, there should be a mediation process available in guardianship disputes so that families are not forced to impoverish themselves in court litigation when they do lose their guardianship rights.

In the absence of a mediation process, the state should be required to appoint an attorney to represent an individual who gets involved in a dispute with the state over guardianship and can’t afford an attorney on their own.

Also, in light of the Developmental Disabilities Assistance and Bill of Rights Act, family members and other caring individuals should have standing to advocate for an individual even if they are not the person’s guardian.  And limits are needed on the number of persons that individual attorneys, corporate guardians, and others should be allowed to represent as guardians.