DPPC’s public presentation of data on abuse is unclear

After a lengthy series of inquiries from COFAR, the state Disabled Persons Protection Commission (DPPC) has acknowledged that data in its annual reports on abuse in Massachusetts do not necessarily reflect the actual number of cases that it investigates or refers for investigation.

In letters in response to an April 12 order by the state’s public records supervisor to clarify to COFAR how the DPPC reports its data, a DPPC official said that the numbers listed in the DPPC’s annual reports of both “abuse reports” and “investigations” are not necessarily based on separate occurrences of alleged abuse. Those numbers are based instead on the number of calls or “intakes” that the DPPC receives from witnesses or other reporters.

As a result, the DPPC’s data “may be “inflated” because the agency’s “current method of data extraction can produce duplications when multiple intakes are received on the same incident,”  according to Andrew Levrault, the DPPC’s assistant general counsel. Levrault said the agency’s database was “undergoing a redesign process, and this is one of the features we are hoping to improve.”

Levrault also stated in an email that the DPPC’s data may be “deflated” in some other instances.

The DPPC undertakes investigations of alleged abuse and neglect of adults under 60 with disabilities in Massachusetts, and supervises additional cases that it refers for investigation to the Departments of Developmental Services (DDS) and Mental Health (DMH) and to the Massachusetts Rehabilitation Commission (MRC). As such, the DPPC’s data are relied on by policymakers, researchers, journalists, and others as important indicators of the quality of life of persons with disabilities.

In light of the critical role that the DPPC plays, it is vital that data and other information that the agency publicly provides about the care and conditions of persons with disabilities be accurate and presented in a clear and straightforward way.

Levrault said that in contrast to the DPPC, DDS, to which the DPPC refers most of its cases for investigation, does report data based on the actual number of cases it investigates.

The differences between the DPPC and DDS in reporting abuse data make it difficult to compare that data, not only among agencies in Massachusetts, but potentially between Massachusetts and other states. COFAR has been attempting to analyze aggregate data on abuse and abuse investigations done by the DPPC, DDS, and other agencies.

The DPPC’s most recent online annual report for Fiscal Year 2017 states that the agency received 11,395 “abuse reports” that year, and that of that number, 2,571 “investigations” were assigned to investigators from the DPPC, DDS, DMH, and the MRC.

In his May 1 letter, Levrault stated that:

…the 2,571 investigations listed in the Fiscal Year 2017 Annual Report specifically refers to investigations of 2,571 intakes.

Levrault stated in the email that a single intake may refer to one or more occurrences of alleged abuse, or conversely, that “multiple intakes” may refer to a single occurrence of alleged abuse.

As a result, it appears that while the DPPC annual report listed 2,571 “investigations” in Fiscal 2017, it is unlikely that that number represents the number of investigations that were actually undertaken by the DPPC and by DDS, DMH, and the MRC. Similarly, the 11,395 abuse reports listed in the annual report for that year may or may not represent the actual number of alleged occurrences of abuse that were reported to the DPPC.

In a comparison of data from both the DPPC and DDS, COFAR found that the number of abuse intake calls referred by the DPPC to DDS for investigation each year from Fiscal Year 2010 to 2018 was, on average, 22.5% higher than the number of cases that DDS reported investigating. (See chart below created from data from both agencies.)

Chart on DPPC versus DDS numbers of abuse investigationsFY 10-18

Those differences appear to be due to the differences in the ways that the DPPC and DDS report the data.

The accuracy of the DPPC’s data reporting is certainly a problem that can be corrected if and when the agency redesigns its database. It raises a question, however, as to why the DPPC has not made it clear in its annual reports as to what the data reported in them actually represents.

Yet, we have already seen that the DPPC is highly resistant to public disclosure of its investigative reports, and is pushing for legislation that would wrap a tighter cloak of secrecy around its records.

In failing to be clear about the meaning of its published data, the DPPC has not been transparent or straightforward about the scope and nature of the problem of abuse and neglect in Massachusetts.

The DPPC is the only independent agency available when family members or others discover abuse and neglect in the DDS system. Without the DPPC, the best option for reporters of abuse would be to dial 911. Yet the DPPC is an agency that needs to place a higher value than it currently does on the public’s right to know.

 

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Legislators and the media should be concerned about secrecy in investigations of abuse of persons with disabilities

A bill in the state Legislature, which would draw an ever-tighter cloak of secrecy around investigative reports on abuse and neglect of persons with disabilities in Massachusetts (H.117), appears to be going relatively unnoticed on Beacon Hill and by the media.

Section 17 of the bill would effectively exempt all investigative reports and records of the Disabled Persons Protection Commission (DPPC) from public disclosure. Under the section, the DPPC’s records could be kept entirely secret even if all personal information in them were redacted.

At a certain point, laws and other initiatives that are ostensibly enacted or undertaken to protect privacy cross the line into secrecy and provide a curtain for agencies to hide behind. That is what we think is happening with Section 17 of this bill.

The DPPC is the state’s only independent agency charged with investigating allegations of abuse and neglect of adults under the age of 60 with developmental and other disabilities. Without access to the agency’s investigative reports, the public will have much less understanding, not only of the scope and nature of the problem of abuse and neglect, but what the DPPC and other agencies are doing about it.

Overall, H.117 and its counterpart in the Senate (S.53 ) propose making a number of changes to the DPPC’s  enabling statute that seem helpful, such as replacing the term “disabled person,” with “person with a disability.” That latter term avoids the stigma associated with describing an individual totally in terms of their disability.

Anna and Richard at 4.30.19 hearing

COFAR member Richard Buckley (left) and Vice President Anna Eves testify Tuesday at the State House about abuse and neglect of the developmentally disabled. At the hearing, COFAR offered testimony against proposed DPPC secrecy language in Section 17 of H.117.

However, Section 17 is not at all innocent, in our view. It would add language to the DPPC’s enabling statute stating that the agency’s records containing confidential or personal data “shall not be public records.” (my emphasis)

That proposed language is not needed to protect the personal privacy of victims of abuse and neglect or others involved in those investigations. The DPPC’s enabling statute currently states that the DPPC should disclose “as little personally identifiable information as possible.” That language gives the DPPC the discretion to protect the privacy of all parties involved.

The presumption of the state’s Public Records law is that all state governmental records are public documents unless they are explicitly exempted from disclosure by statute, or they fall under an exemption to the Public Records law itself.

At a legislative hearing this past Tuesday on H.117 and other bills concerning abuse of persons with disabilities, DPPC Executive Director Nancy Alterio touted the anti-stigmatizing aspects of H.117, but did not mention Section 17. Both Anna Eves, COFAR’s vice president, and I testified before the Children, Families, and Persons with Disabilities Committee against the section.

The committee members didn’t ask us any questions about our objection. We may have caught them by surprise about it.

The House and Senate versions of the bill were filed by Representative Sean Garballey and Senator John Keenan.

In February, Garballey got back to me and said he wasn’t aware of the implications of the Section 17, and would ask the DPPC about it. He said he agreed with us that the enabling statute should not completely restrict the disclosure of the DPPC’s records.

The chief of staff for Sen. Keenan was more noncommittal about the bill, but also said she would look into and ask about our concerns.

The mainstream media don’t seem to be paying attention this year

On March 21, I emailed Boston Globe Editor Brian McGrory, laying out our concerns in detail and asking whether the Globe might take a position against the language in Section 17. To date, McGrory has not responded to that or to a subsequent email I sent about the bill on April 5 and again on April 8 to The Globe and other news organizations around the state.

The New England First Amendment Coalition published our email to mainstream media outlets on its blogsite on April 8. But we have gotten little or no response from the rest of the media either.

Our media list includes current editors and other staff on 24 newspapers, including the Globe and Herald; major chains such as the North of Boston Media Group;  the Associated Press, the State House News Service; CommonWealth Magazine; major Boston television news outlets; and NPR radio affiliates WBUR and WGBH.

The Globe in the past has taken strong stances in favor of the public disclosure of state records. In 2015, the paper organized coordinated editorials among several media outlets criticizing the state’s Public Records supervisor for rulings allowing the withholding of records from public disclosure by state agencies.

The Globe’s 2015 editorial maintained that the state’s criminal-records law, in particular, “was never intended to open up a memory hole to conceal unflattering information about the police.”

That is similar to the argument we have made in seeking to obtain investigative records from the DPPC. And now, Section 17 would make that cloak of secrecy even more opaque.

DPPC heading in the direction of the Elder Affairs office

Unfortunately, with the introduction of Section 17 in H.117, it appears that the DPPC is seeking to emulate the Executive Office of Elder Affairs (EOEA), which investigates abuse and neglect of persons 60 and older. The EOEA’s enabling statute does state that the agency’s records are not public.

On its website,the DPPC states that the reason for the non-public records provision in H.117 is to make the DPPC’s enabling statute conform to the EOEA’s statute in order to give persons with developmental disabilities “the same safeguards provided for the records of elders.” (Please note that the bill numbers on the DPPC website appear to be from the prior legislative session.)

But that only raises further concerns for us about the potential secrecy of the EOEA’s records.

As noted, the enabling statute of the EOEA, M.G.L. c. 19A, s. 23, explicitly states that departmental records containing confidential information are not public. The EOEA statute goes even further, giving the Elder Affairs Department the authority to actually destroy investigative records about abuse allegations if the department  finds that the allegations are unsubstantiated. This seems to us to be bad law and not one that the DPPC should be emulating.

The DPPC’s regulations go further than the enabling statute in exempting records from disclosure

While the DPPC’s regulations explicitly state that the DPPC’s records are not public , the agency’s enabling statute, as noted, says only that the DPPC should disclose “as little personally identifiable information as possible.”

The DPPC’s regulations go further in shielding the agency’s records from public disclosure than does the enabling statute, and we think the regulations should therefore be changed to conform to the enabling statute. H.117, however, would do the opposite by making the statute conform to the regulations.

We hope The Globe and other media outlets in Massachusetts wake up to the threat this bill poses to transparency in state government. The DPPC receives tens of thousands of allegations of abuse and neglect each year, and “screens in” several thousand of those for investigation.

It is already extremely difficult to obtain those records from the DPPC even in redacted form. H.117 would make it virtually impossible to obtain those records, and would move state government that much further away from operating with openness and transparency.

DPPC ordered to clarify its abuse reporting system following data inflation admission

April 16, 2019 1 comment

In the wake of an acknowledgement by the Disabled Persons Protection Commission (DPPC) that some of the data it had provided COFAR on abuse may be inflated, the state’s public records supervisor has ordered the agency to clarify the nature of the data it publishes.

The April 12 decision by Public Records Supervisor Rebecca Murray is in response to an appeal filed by COFAR after the DPPC stated that it was unable to provide data on the actual number of “abuse allegations” the agency receives each year and the number of such allegations that are substantiated by investigations.

In emails in March, Andrew Levrault, DPPC assistant general counsel, stated that spreadsheet data on abuse complaints and investigations, which the DPPC had previously provided to COFAR, “may be inflated.” He later stated, in a response to COFAR’s appeal, that the DPPC’s data may be “deflated” in some other instances.

Levrault said that the probable data inflation occurred because the agency does not track actual abuse allegations, but rather tracks abuse “intakes,” which are calls made to the agency. He said there may be “multiple” intake calls for each allegation, and that the DPPC is unable to “extract” the number of actual allegations that the agency receives.

Levrault’s statements appear to leave it unclear whether data listed in the DPPC’s annual reports accurately represents the number of abuse allegations or incidents that the agency is informed of or investigates. Levrault did claim in an email that the numbers in the annual reports are not inflated.

In her April 12 decision, Murray stated that while the DPPC has noted that it cannot extract data by allegation, “the DPPC did not clarify whether it could produce the data to back up the numbers DPPC uses to draft its Annual Reports.”

Murray noted that COFAR has questioned “how it is possible that DPPC is able to report the number of abuse reports and number of investigations, if it cannot extract that data from its database. I find that DPPC must clarify this.”

In an email on March 14, Levrault acknowledged deficiencies in the DPPC’s abuse tracking system. He stated that:

…our current method of data extraction can produce duplications when multiple intakes are received on the same incident.  The database is undergoing a redesign process, and this is one of the features we are hoping to improve.

Later, in an April 8 response to COFAR’s records appeal, Levrault stated that when compared to the record keeping system used by the Department of Developmental Services (DDS), to which the DPPC refers many of the abuse complaints it receives:

… the DPPC’s figures may be elevated in some instances, and may be deflated in others–depending on the nature of the comparison.

Yet, when asked by COFAR, also on March 14, whether the numbers of “abuse reports” listed in the DPPC’s annual reports are therefore likely inflated, Levrault replied that the numbers in the annual reports “are not inflated. They are consistent with our long-standing statutory reporting requirements, which mandate that we report the ‘number of claims of abuse.’ (emphasis in the original)

Levrault did not explain how it could be the case that the DPPC is able to report accurate or non-inflated numbers in its annual reports if the agency is unable to track or extract data on abuse allegations, and tracks only data on intakes.

The DPPC’s most recent annual report for Fiscal Year 2017 states that the agency received 11,395 “abuse reports” that year, and that it had “screened in” 2,571 of those reports for investigation by the DPPC itself and other agencies.

The annual report stated that the same number of 2,571 “investigations” was assigned to investigators from the DPPC, the Department of Developmental Services, the Department of Mental Health, and the Massachusetts Rehabilitation Commission, and that those investigators had completed 1,866 of those investigations.

It is unclear whether the 11,395 “abuse reports” cited in the 2017 annual report is a reference to intakes or to allegations.  However, given that the annual report refers to 2,571 of those 11,395 abuse reports as representing “investigations,” it would appear that the number 11,395 does refer to actual allegations.

If, however, it is the case that the spreadsheet data provided to COFAR by the DPPC is inflated, it would render that data virtually useless in attempting to determine the number of abuse allegations that agency receives and investigates each year.

However, Levrault also stated in a separate email on March 14 that:

Each intake received by the DPPC is assigned a separate case number.  If the DPPC receives multiple intakes involving the same allegation and the allegation meets the DPPC’s jurisdiction, then the intakes will be combined for investigation.  Moving forward, the DPPC case would then be identified by the combined intake numbers. (my emphasis)

That statement by Levrault appeared to imply that the agency does, in fact, keep documentation on the number of abuse cases that it either investigates or refers to other agencies for investigation.

As a result, COFAR asked the DPPC on March 15 for the number of abuse allegations and investigations resulting from intake reports that the DPPC had “combined for investigation.” When Attorney Levrault responded that the DPPC had no responsive records to that request, COFAR appealed the matter to the state’s Public Records Supervisor.

DDS does track abuse allegations

As noted, Levrault stated in his April 8 response to COFAR’s appeal that unlike the DPPC, DDS does have the capability of tracking individual abuse allegations or cases. The DPPC refers the majority of the abuse complaints it receives to DDS for investigation.

COFAR has previously reported that the DPPC actually has a lower abuse-allegation caseload per investigator than DDS, and that the DPPC has substantiated a higher percentage in recent years of the allegations it has investigated itself than has DDS.

In reporting those percentages, COFAR was assuming that the DPPC was consistent in reporting the number of allegations it was investigating itself, and the number of allegations that DDS was investigating.

In the past year, we have been battling with the DPPC over the transparency of the agency’s investigative policies. We think our latest appeal concerning the data the DPPC publishes underscores the need for a major review and overhaul of those policies and procedures. 

Ed Orzechowski receives the Ricci award and calls for memorial to residents of former Belchertown State School

March 22, 2019 1 comment

Ed Orzechowski, a former COFAR vice president, accepted the 2019 Dr. Benjamin Ricci Commemorative Award on Wednesday, and called for the establishment of a “lasting memorial” at the  former Belchertown State School.

The annual Ricci award celebration recognizes the accomplishments of individuals served by the Department of Developmental Services, and the dedication of caregivers and advocates.

“I urge the Department of Developmental Services, the Legislature and local officials to create a lasting respectful memorial, a tangible commemoration to all the living and deceased former residents of Belchertown and the other institutions,” Orzechowski said in accepting the award. “What they (the Belchertown residents) experienced, what they endured, must not be forgotten.”

Ed O. photo Ricci award1

Ed Orzechowski accepts the Benjamin Ricci award at the State House on Wednesday. At left is Orzechowski’s wife, Gail, who has worked with Ed in advocating for residents of DDS facilities.

Orzechowski authored “You’ll Like it Here,” a gripping book published in 2016 about the life of Donald Vitkus, a one-time resident of the former Belchertown State School.

Orzechowski’s book chronicled Vitkus’s childhood in the 1950s at Belchertown, which was then notorious for its inhumane and unsanitary conditions. The book also described Vitkus’s battle throughout the rest of his life to come to terms with his past at Belchertown.

In addition to serving for many years on COFAR’s Board, Orzechowski was president of the Advocacy Network, a former advocacy organization for the developmentally disabled in western Massachusetts.

In Wednesday’s State House ceremony, DDS Commissioner Jane Ryder presented the Ricci award to Orzechowski.  The award is named for Ben Ricci, the original plaintiff in the 1970s landmark federal class action lawsuit, Ricci v. Okin, that brought about upgrades in care for residents of Belchertown and other Massachusetts facilities for the developmentally disabled.

During the Wednesday ceremony, Orzechowski noted the importance of the efforts of three key individuals in the Ricci case, including Ricci himself, the late U.S. District Court Judge Joseph L. Tauro, who oversaw the class action lawsuit, and Beryl Cohen, the attorney for the plaintiffs. “Without the convergence of these three men, conditions for people who were called retarded—clinically labeled idiots, imbeciles, and morons—would not have improved the way they did,” he said.

Orzechowski also talked about his friendship with Vitkus, who died in January 2018 and was buried as was his wish in the Warner Pine Grove Memorial Cemetery for residents’ at Belchertown. In the course of writing the book, Orzechowski and Vitkus had become close; and a year ago, when Vitkus himself was selected to receive the Ricci award posthumously, Orzechowski was on hand at the State House to accept it on Vitkus’s behalf.

During Wednesday’s ceremony, Orzechowski also thanked his wife, Gail, for her advocacy efforts on behalf of her sister, Carol, who was a Belchertown resident during the period of abuse and neglect.

“I know Carol would thank you Gail, if she could,” Orzechowski said. “You are the one who has fought so hard for Carol and the human rights of so many others. You and the other family members and caregivers here have spoken up for your loved ones, and fought for the necessary funding to sustain their care. I only wrote a book. You live it every day. You deserve applause.”

Gail Orzechowski joined Ed at the podium at that point.

In discussing his call for a memorial at the Belchertown School, Orzechowski noted that he recently visited the grounds of the school, which was closed 26 years ago, and found the place to be “barely recognizable.” The town, he said, has built a new police station there, and there is now a modern continuing care facility on the site.

There are aso plans to construct a substantial brewery on the grounds. All that remains of the state school, he said, is the crumbling administration building and a few former residence halls.

Orzechowski said that while he has heard of plans for a walking trail with plaques to be a remembrance, he felt there needs to be something more substantial. He called for a museum on the grounds and for a memorial, a place for archives, and photos and exhibits.

“Many of us worked hard to close the institutions… the redevelopment of those properties is to be expected…and there’s much to be celebrated in the improved lives of our citizens with developmental disabilities,” Orzechowski said. He added that, “Today Wrentham and Hogan provide much-needed services for their residents, and community settings are much more homelike.”

At the same time, Orzechowski said, “there’s an irony here. What happened in the twentieth century at Belchertown, what happened at Monson, Dever, Glavin, Wrentham and Fernald—eugenics, radiation experimentation, day-to-day abuse and neglect—cannot be erased and should not be forgotten.” He added that existing archives involving residents of the state school are scattered and disorganized.

Orzechowski is currently at work on a second book about another Belchertown state school resident named Darlene. He said that when he told her about what is left of the institution, she said, “It’ll be like we were never there, like we never existed.”

 

 

 

Supported Decision Making bill needs clarity and safeguards

February 21, 2019 6 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.

 

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 2 comments

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.