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Guardian rights bill would help families caught in the DDS-probate system

March 23, 2015 10 comments

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.

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Baker administration continues Gov. Patrick’s misguided effort to close sheltered workshops

March 16, 2015 3 comments

As the Legislature takes up Governor Baker’s budget for the coming fiscal year, it looks as though the battle over sheltered workshops for the developmentally disabled in Massachusetts is set to begin once again.

Supporters of these vital programs won a reprieve last year when the Legislature inserted protective language for the workshops in the current-year budget.  The language prohibits the Department of Developmental Services from closing or cutting off funding for sheltered workshops as long as there are people who seek them or wish to remain in them.

The budget language temporarily thwarted the efforts of then Governor Patrick to close all remaining sheltered workshops in the state as of this coming June.  But the protective language has been removed from Governor Baker’s proposed budget for fiscal 2016.

It appears that despite the fact that we have a new governor, it is the same DDS with the same administrators running it; and they will never back away from their ideological opposition to any program that serves more than a handful of disabled individuals in one location.

Sheltered workshops provide settings in which developmentally disabled people can do assembly jobs and other types of work.  In the view of the now Baker administration, such settings of care “segregate” developmentally disabled people from their non-disabled peers, and supposedly prevent them from reaching their potential in the mainstream workforce.

Many families and guardians of workshop participants, however, want these programs to continue and depend on them to provide valuable skills and meaningful activities to the participants.

Last spring, after a lobbying campaign by advocates of the workshops, language was inserted into the current-year budget, stating that DDS “shall not reduce the availability or decrease funding for sheltered workshops serving persons with disabilities who voluntarily seek or wish to retain such employment services.”  The protective language survived a House-Senate conference committee in June, largely due to the support of House Ways and Means Chair Brian Dempsey.

But Governor Baker’s budget has not only removed that language protecting the workshops, the budget proposes a $4 million increase in a separate DDS account to move people from sheltered workshops into DDS day programs, many of which do not provide work-related activities.

We support the continued operation of sheltered workshops for reasons given in an email sent to Dempsey last May by Richard Urban, who is a guardian of his brother Tom.  In December 2013, DDS closed Tom’s sheltered workshop where he had been employed for most of his adult life. Richard noted that Tom’s “work ethic and paycheck (from his sheltered workshop program) were two constants that allowed him a place on a playing field of equality with his peers, family and friends.”

Since his “forced exit from his workshop,” Richard said, Tom “has grown distant, is very confused, and expresses continued sadness over his job loss.  His identity, and work community, have been lost, through no fault of his own but by virtue of a policy shift for which I am at a complete loss to understand.”

We’re at a loss to understand it as well.

Two lawmakers support an independent evaluation of Andy McDonald

March 12, 2015 Leave a comment

More than a year ago, we asked for an independent clinical evaluation of a now 47-year-old intellectually disabled man, who has not been permitted to visit his parents in their Sherborn home for the past 19 years because he has been deemed to be a danger to the community.

Finally, two state legislators are asking for the same independent evaluation of Andy McDonald. In a letter sent to the Department of Developmental Services on February 25, both Senator Richard Ross and Representative David Linsky further asked that the evaluation take into account the views of Andy’s father, Stan, and his step-mother, Ellen, who have been fighting for years for supervised visits home for him.

Not only is Andy prohibited from visiting the home he grew up in; Stan and Ellen are not even permitted to discuss the topic with him.  Under the rules imposed by his DDS-funded group home, Andy, who has frequently expressed a longing to see his home again, is forbidden from mentioning his desire to do so.  It seems like a violation of free speech; but then again, when you are under the control of both the DDS and probate court system, your right to self-determination becomes very limited.

That loss of self-determination may be appropriate in some cases; but the McDonald case shows how dysfunctional the system can get.  The case is replete with questions about the validity of previous clinical evaluations of Andy and about a 2006 probate court ruling, which concluded that Andy was sexually dangerous and should never be allowed to return home.

In the 2006 ruling in which he denied Stan’s bid for guardianship of Andy, Middlesex County Probate Court Judge Edward Rockett stated that Andy had been arrested in 1990 for sexual assaults of three young girls who lived across the street in Sherborn.  That was not true, however.

Andy was arrested in May 1990 for threatening an unidentified person during a telephone call, according to the district court record.  The nature of the threats was not disclosed.  In July of that year, he was arrested for disturbing the peace in downtown Sherborn and with assault for punching his stepmother, according to a police report.  Both Stan and Ellen say the punch was accidental and occurred while Ellen was driving Andy to the police station after he was accused of disturbing the peace.  “He was flailing his arms, not threatening me,” Ellen said in an email this week, “and his fist landed on me. It didn’t hurt me. It made a red mark that faded shortly after.”

There is no indication in the police reports that Andy ever sexually assaulted anyone.

In his ruling, Rockett also cited a statement by the clinical director of Andy’s group home that Andy had told him he had had sexual fantasies about children.  But Rockett acknowledged in his ruling that there was testimony in the court case that Andy “will always say what he thinks other people want to hear.  This causes his statements to be very inconsistent.”

As we noted in a previous post about this case, Andy was committed to McLean Hospital in Belmont immediately after the July 1990 threatening and disturbing-the-peace incidents. In the years following, he was subjected to a series of inappropriate residential placements and treatment, in many cases because a series of court-appointed guardians, state agencies, and providers made the wrong decisions regarding his care.

Most of the decisions about placement and treatment of Andy were made without the consent of Stan, who had agreed to the appointment of a guardian for Andy in 1986 as part of the settlement of a longstanding custody battle over him with his former wife.  Andy has had a series of court-appointed guardians since, and Stan has never been able to regain that guardianship.  His attempts in probate court to do so have been opposed by DDS.

Andy has not exhibited any significant behavioral problems in a decade and has been taken on community outings to many places other than his home without any behavioral incidents, according to Stan and to notations in Andy’s clinical care plan.  But that record of good behavior does not appear to have changed the position of either the probate court, DDS, or Andy’s current court-appointed guardian that he must never be allowed to go back to his hometown.

That ban on visits to Andy’s boyhood home combined with his group home’s policy that he must not even discuss his desire to visit his parents there amounts to psychological abuse, Stan maintains. Moreover, the situation raises concerns in Stan’s and Ellen’s minds about Andy’s future and what will happen when they are no longer able to travel from Sherborn to visit him in his group home in Northborough.  Stan is 79 years old.

In 2000, Ronald Ebert, a psychologist, recommended that the staff of Andy’s group home try a “trial visit” to the Sherborn Inn to hear Stan, an acclaimed jazz musician, play in his band if it could be demonstrated that the persons Andy was accused in 1990 of threatening no longer lived in town. In fact, Stan says, those persons had moved away as of that time.  “If such visits can be managed successfully, there is no reason why they could not be built into his visit schedule…,” Ebert wrote.  But Ebert’s recommendation was never heeded.

As is the case with he parents of Sara Duzan, who were denied all contact with their daughter for several months, Stan and Ellen McDonald have found themselves trapped in a Twilight-Zone-like situation imposed on them by the state’s dysfunctional human services and probate court system. It’s long past time to bring in someone with a truly independent view to take a new look at this case.

Budget reductions falling heavily on state-run services for the disabled

During a conference call on Wednesday with advocates for the developmentally disabled, Department of Developmental Services Commissioner Elin Howe didn’t have much good news about the potential impact of Governor Baker’s proposed Fiscal Year 2016 budget.

The budget is bad news for DDS accounts, particularly state-operated services.

“These are huge and difficult reductions,” Howe said.

Baker is dealing, of course, with a projected budget shortfall in the coming fiscal year, and it looks as though people with intellectual and developmental disabilities are among those who will pay a price for that shortfall.   Howe said DDS is assuming departmental layoffs will not be necessary if the Legislature accepts Baker’s early retirement proposal for state workers.  If that doesn’t happen, measures such as layoffs may be needed, she said.

Just about every DDS account is being funded lower than what DDS had asked for.  Howe said the governor’s budget required a total of $27 million in reductions from DDS funding requests, but DDS has been able to reduce the hit by $8 million by using some federal revenues as an offset to the total reductions.

As usual, state-operated services may be taking the brunt of the reductions. Howe noted that Baker was proposing a $2.6 million reduction from the DDS request in the state-operated group homes line item.  Under Baker’s budget, the line item would be increased by $5.1 million, from current-year spending (from $209.6 million to $214.7 million).  But that amount is below what DDS considers necessary to maintain current services.

Exactly what the state-run group home line item reduction means is unclear.  Howe said DDS is not projecting “reductions in services to people,” but rather there will be “changes in staffing.” Among other things, DDS has been working to reduce the use of overtime in state-operated group homes, she said.

In January, we sent a letter to Kristen Lepore, Baker’s new secretary of administration and finance, asking that the new administration consider making the funding of state-operated care for the developmentally disabled a priority. For too long, as we noted, state government has been divesting itself of its responsibility to provide care for the most vulnerable of its citizens, and has failed to adequately monitor and control the handover of human services to state-funded corporate providers.

Baker’s first budget does not appear to address that situation.

In addition to the shortfall in funding for state-operated care, Howe said the state-run developmental centers line item would be funded under the governor’s budget at $2 million less than what DDS was requesting.  This account would be cut from the level of spending in the current fiscal year as well, under Baker’s budget.

In addition, DDS service coordinators, Howe said, were being funded at a level $1.8 million below what DDS had requested.  The DDS administrative line item, which funds the service coordinators, would be increased under Baker’s budget, but not by enough to maintain current services.

Corporate provider-run care does not come through unscathed in the governor’s budget, but the overall imbalance in funding between state and provider-operated care will remain.

Funding to DDS corporate residential providers rose past the $1 billion mark for the first time in the current fiscal year.  In fiscal 2014, then Governor Patrick and the Legislature increased the provider line item by more than $140 million –or more than 16 percent—in FY 2015 dollars.  At the same time, both the former governor’s and the legislative budgets either cut or provided much more meager increases for most other DDS line items.

The provider residential account subsequently received a supplemental budget increase in the current fiscal year of $44.7 million, even as both Baker and his predecessor, Patrick, were cutting spending across the board to deal with a projected current-year budget deficit.

Baker has proposed another $33.6 million increase in the provider residential line item for fiscal 2016, but DDS and the providers apparently wanted $4 million more than that.

Among the other DDS line items:

  • Baker has proposed an increase in funding for the day program line item that is $9.7 million lower than what DDS wanted. The line item would be increased by $2.8 million under  Baker’s budget proposal.
  • Respite and Family Supports would be funded at a level $5 million below DDS’s request. Under Baker’s budget, the line item would be increased by $7.4 million, but this line item has been continually underfunded in recent years.  It was cut in the current year by $2.5 million in light of the projected budget deficit.
  • The transportation line item would receive a $3.5 million increase under Baker’s budget, but that increase was $3 million below what DDS wanted.
  • The Autism and Turning 22 accounts would be level-funded, which amounts to a cut when adjusted for inflation.
  • A long-time revenue account of $150,000 from sales from the dairy barn at the Templeton Developmental Center would be eliminated.  The money has been used for program needs at the Center.

The fiscal 2016 budget is now before the Legislature, specifically the House Ways and Means Committee.  We understand that this is a fiscally difficult time for all state programs.  When it comes to the DDS budget, though, this may be a good time to rethink some longtime funding priorities.  We hope key legislators will do just that in coming months.