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Supported Decision Making bill needs clarity and safeguards

February 21, 2019 5 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.

 

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Provider transparency bill tops COFAR legislative priorities

February 13, 2019 2 comments

A bill requiring the Department of Developmental Services to post online comparative information about the performance of residential providers and abuse allegations against them tops the list of bills that COFAR is proposing for the new 2019-2020 session of the state Legislature.

Last week at a hearing held by the Massachusetts Developmental Disabilities Council (MDDC), we presented a list that includes that bill and four other proposed bills that were filed last month.

In doing so, we joined a number of other advocacy groups and individuals at the MDDC hearing in advocating for legislation dealing with issues affecting the developmentally disabled. We’re in support of most of the proposed legislation put forth by other groups, but we have reservations about some of the proposals.

In this post, I’ll say a few words about our proposed bills. I’ll list other proposed bills put forth at the hearing in our next post.

It should be noted that as of this writing, the legislative leadership has yet to appoint the membership of the Children, Families, and Persons with Disabilities Committee or of any of the other legislative committees in the new session. So far, none of the bills have received their official legislative numbers, but the links below to the bill drafts will continue to work when the numbers are assigned, we hope.

An Act regarding transparency for individuals and guardians

As we’ve previously reported, this bill, which is at the head of our list this year, is modeled on an online database system in the state of Illinois. The bill would require the Massachusetts Department of Developmental Services to provide similar comparative information on the department’s website about group home providers.

The Illinois Department of Human Services provides an online “provider scorecard,” which offers comparative information about group home provider performance. In addition, that agency provides online reports on the numbers of abuse allegations and abuse substantiations made against individual providers in the state.

Such information has the potential to help families and guardians in making informed decisions about placement of their loved ones in DDS-funded facilities.

However, comparative “scorecard” information might still be of limited value if it comes straight from an agency like DDS, which also contracts with providers to run group homes and directly manages a separate network of residential facilities. Inspecting and licensing what are essentially its own facilities gives DDS an incentive to minimize or gloss over problems or poor care delivered in those settings.

For many reasons, we think it is necessary to have an independent agency manage the group home licensure and certification process and report the results of it. A second bill we are proposing would do just that.

An Act establishing an independent Office of Quality Assurance

As noted above, this bill would establish an independent state agency that would inspect and license group homes for individuals with intellectual disabilities. As the model for the bill, we’ve taken language from a bill proposed in prior years, which would establish an independent Office of Quality Assurance. That agency would be responsible for “monitoring all elements of service provision for the developmentally disabled…”

The bill would not require additional state funding because it would transfer the existing DDS budget for group home inspections and licensure to the new independent agency.

An Act further regulating the appointment of certain guardians

This bill 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.

We have long supported this legislation, which would level the playing field in the DDS–probate court system, which is currently heavily biased against families. As we have reported, probate judges frequently appoint attorneys as guardians of developmentally disabled persons, passing over their family members — particularly their parents.

We have found that the professional guardians, who are paid by DDS, often side with the department in disputes with family members over care of individuals in the system. 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.

The MDDC itself seemed to recognize the importance and suitability of family members as guardians of DDS clients. In 2015, the legislation (then H. 1459) received support for the first time from the Council, which listed the bill as one of its legislative priorities for 2015-2016. In testimony to the Judiciary Committee in 2015, the MDDC stated that:

…the person who is chosen to be guardian must be someone who knows the individual well, can truthfully speak to the individual’s desires and has the time to devote to crucial decisions. In many cases, the natural choice for an individual’s guardian is one of the parents.

Yet, for reasons that we have never been able to find out, the bill has never gotten out of the Judiciary Committee.  We hope this year will be different.

An Act Relative to Community Based Day Support Services

This bill would require that optional work activities be made available in DDS-funded day programs. The bill was proposed to address the absence of work activities for developmentally disabled persons who have sought to continue those activities following the closures of all remaining sheltered workshops in Massachusetts in 2016.

The bill was first proposed last year by Barbara Govoni, the mother of Danny Morin, a developmentally disabled man who lost his sheltered workshop program. Danny became frustrated when he was subsequently offered day program activities, most of which he couldn’t relate to.

Act to Increase the Safety of Individuals with Disabilities Relying on Life Support Equipment

This bill specifies that when a disabled individual is discharged from a hospital to a residential group home, a licensed medical professional from the group home must review and acknowledge the full requirements of the hospital discharge plan with respect to life support equipment. The medical professional must then advise the group home staff about those requirements.

As we reported in our previous post, this bill was proposed by Maureen Shea, the mother of Tommy, an intellectually disabled resident of a staffed apartment. Tommy died of an epileptic seizure after the group home staff failed to monitor Tommy’s seizure monitoring equipment as required by his Individual Support Plan.

There is much additional legislation that we would liked to have proposed this session, but time and resources are limiting us to these proposals for now. We all know as well how difficult it is to get anything passed in the Legislature.

With the help of our members and others who want to bring about change to the DDS system, we hope these bills will move forward. Taken together, we think they would spur major improvement in a system that badly needs it.

Mother pushes for medical training bill after her son dies following a seizure

February 11, 2019 Leave a comment

Maureen Shea’s son, Tommy, had just returned on June 7, 2017, from a two-week stay in a hospital to his staffed studio apartment.

Tommy, who was 33, had an intellectual disability and was subject to epileptic seizures while asleep. His bedroom was equipped with an audio and visual monitor that could alert the staff so that the staff could make sure during a seizure that Tommy didn’t roll over face-down — a position that can prevent breathing.

Anna and Maureen3

Maureen Shea (right) talks with COFAR Vice President Anna Eves prior to a hearing by the MDDC last week on legislative proposals this session concerning the developmentally disabled. Shea is pushing for a bill that would ensure that residential facility staff are adequately trained to use medical equipment needed by the facility residents.

Maureen and her daughters were concerned that the residential staff did not regularly check the monitor’s batteries and that they had not been adequately trained in how to position the device. But provider managers had repeatedly assured Maureen that the staff were being trained and were knowledgeable about Tommy’s medical equipment.

On June 8, 2017, Maureen received a call from the residential supervisor to come to the residence immediately. When she arrived, the police were there. They told her that Tommy had died and that he had been found face-down on his bed. The batteries in the monitor were later found to be dead.

Last week, Maureen recounted her experience at a hearing held by the Massachusetts Developmental Disabilities Council (MDDC) on bills concerning persons with developmental disabilities. The bills have been filed in the new 2019-2020 legislative session.

Maureen and her family have proposed one of those bills. It would require that when a disabled individual is discharged from a hospital to a residential facility, a licensed medical professional from the facility must review and acknowledge the full requirements of the hospital discharge plan regarding any life support or other medical equipment. The medical professional must then advise the residential staff about those requirements.

That bill (SD 1176), which was filed by Senator Patrick O’Connor, Maureen’s state senator, is one of several legislative priorities for COFAR as well. At the MDDC hearing, we presented those priority bills, including a measure to make information about care in the DDS group home system more available to the public. We’ll have more information on those bills in our next post.

Staff was required to check monitor

As of early June 2017, Tommy had spent two weeks in a hospital for treatment of chronic vomiting due to migraines. Maureen was nervous about his return to his apartment because he had had four epileptic seizures in his sleep during the year and a half he had been living there.

Tommy’s Individual Support Plan (ISP)stated in a number of places that staff would check his monitor every day, Maureen said. She and her daughters waited 11 months for the results of the autopsy, which concluded that Tommy had died of cardiac arrest with epilepsy as a contributory cause.

Maureen said that prior to Tommy’s death, she had to enlist the Disability Law Center to represent her in an effort to force the program staff provider to agree to provide a van for Tommy’s transportation with a non-smoking driver. He had life-threatening asthma.

Tommy’s case recalls that of Yianni Baglaneas

Unfortunately, the apparent failure of the group home staff in Tommy’s case to check his seizure monitor recalls the case of Yianni Baglaneas, the son of Anna Eves, now COFAR’s vice president. Yianni nearly died in April 2017 after aspirating on a piece of cake in a group home in Peabody.

An investigation by the Department of Developmental Services found that the staff of Yianni’s group home had failed to to ensure that he regularly used a portable breathing mask at night called a CPAP (continuous positive airway pressure) machine. Based on the input of a medical expert, the report concluded that the failure to use the machine was the cause of the aspiration that led to Yianni’s near-fatal respiratory failure.

Family members all-too-frequently find that they must take the lead in trying to ensure that their loved ones are safe and well cared for in the system; but when providers and the Department itself aren’t willing or able to match that diligence, the outcomes are too often tragic.

We hope the Legislature’s Children, Families, and Persons with Disabilities Committee will act favorably on Maureen’s bill and ensure that it moves toward passage. The Committee also needs to continue its investigation of the DDS system, which was begun a year ago, and which does not appear up to now to have made much progress.

Ultimately, DDS needs to cooperate fully with the legislative investigation and show it is committed to fixing the system. Passage of Maureen’s bill is one of many steps that need to be taken by the Legislature in the meantime.