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Supported Decision Making bill needs clarity and safeguards

February 21, 2019 2 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.

 

Mary McTernan, a key advocate for the developmentally disabled, dies at 79

January 28, 2019 Leave a comment

Mary McTernan, a longtime advocate in Massachusetts and in Washington for persons with developmental disabilities, died Saturday at the age of 79.

McTernan served as president of COFAR from 1992 to 1994, and was president of the VOR, COFAR’s national affiliate, from 2005 until 2009. She served on the VOR Board until 2014.

George Mavridis, also a past COFAR president and a current VOR Board member, described McTernan as “a friend and a mentor.”

mary mcternan2

Mary McTernan

McTernan was active in many efforts on behalf of the developmentally disabled, including an effort to protect the rights of residents of developmental centers in Massachusetts both before and after the late U.S. District Court Judge Joseph Tauro officially disengaged from his oversight of the Ricci v. Okin class-action lawsuit in 1993. In that year, she was named to the Governor’s Commission on Mental Retardation.

She also wrote much of the language of a bill originally sponsored by former Massachusetts Congressman Barney Frank to give families and guardians of residents of developmental centers the right to opt out of federal class-action lawsuits seeking to close the residents’ longtime homes. Both the VOR and COFAR are continuing to push for passage of that legislation.

While at the VOR, McTernan enlisted attorney William Burke to prepare VOR’s Amicus Brief for the landmark 1999 Olmstead U.S. Supreme Court decision, which recognized the need for community-based care for those who can benefit from it, and institutional care for those who cannot.

In its decision, the Supreme Court quoted from the VOR brief that “each disabled person is entitled to treatment in the most integrated setting possible for that person—recognizing that, on a case-by-case basis, that setting may be in an institution.”

After Attorney Burke died, McTernan arranged for the creation of the Burke Legal Fund to help VOR members and local organizations with legal expenses.

McTernan’s efforts often went unheralded, and Mavridis said that was part of her operating strategy.  Echoing the words of Harry Truman, “she often said you can accomplish an awful lot if you do not want to get credit,” Mavridis said.

McTernan’s activism began after the birth of her daughter, Mary Elizabeth, who was intellectually disabled. McTernan became president of the Hogan Regional Center and later went on to head COFAR and then the VOR.

In the early 1990s, when McTernan was president of COFAR and Mavridis was vice present, McTernan asked Mavridis to go with her to Washington, D.C., where the VOR holds its annual meetings. There, she took Mavridis around to the offices of the Massachusetts congressional delegation as part of the VOR’s annual Washington Initiative, and “showed me the ropes,” Mavridis said.

The VOR has credited McTernan with “professionalizing and organizing” the Washington Initiative.

McTernan was a former teacher in the Boston public school system and a member of the League of Women Voters. She had a doctorate in public administration from Boston College, and in 1987 was awarded the Boston College Alumni award for outstanding service in education.

Since 2000, McTernan had lived in the Brooksby Village retirement community in Peabody where Mavridis also lives. Mavridis remained her friend and supporter until the end.

Mavridis has suggested that memorial donations may be sent to COFAR in care of Colleen Lutkevich at 3 Hodges Street, Mansfield, MA  02048. Donations can also be made online at www.cofar.org.

Mavridis also suggested that those wishing to make a memorial donation who knew McTernan for her work with VOR may send it to VOR at 836 South Arlington Heights Road #351, Elk Grove Village, IL 60007. Donations can also be made online at www.vor.net.

Condolence cards can be sent to McTernan’s sister, Irene Welch, at 6667 SE Yorktown Drive, Hobe Sound, FL  33455.

New academic paper defends the Pacheco Law, which has been vilified for 25 years for the crime of protecting taxpayers

January 23, 2019 2 comments

The Pacheco Law in Massachusetts is a textbook example of how a good piece of public policy can be trumped and misrepresented for political and ideological reasons.

Now, a new paper published on a website called In the Public Interest has attempted to set the record straight about the 25-year-old law, which has unjustly been used as a political punching bag for almost that length of time.

Full disclosure: I’m one of the three authors of the paper, which is titled, “The Pacheco Law: 25 Years of Taxpayer Protection.” The Pacheco Law, which is also known as The Taxpayer Protection Act, requires a detailed cost analysis prior to privatizing government services.

As a one-time newspaper reporter who covered the legislative debates over the law, and now as a research and communications director for COFAR, I have long been interested in the far-reaching efforts in this state to privatize human services, in particular. In the past two decades, during which I worked for the state Inspector General’s Office and then became an adjunct instructor in public policy at Framingham State and other universities, I’ve become a fan of the Pacheco Law.

lakeville hospital

Lakeville State Hospital — one of many state-run human services facilities that were closed in Massachusetts. A loophole in the Pacheco Law allowed the closings without invoking the law’s cost analysis requirement.

The lead author of the paper is Elliott Sclar, an economist who is professor emeritus of urban planning at Columbia University. Also authoring the paper was Michael Snidal, a doctoral student in urban planning at the university.

Dr. Sclar and I were among a group of people who were asked last year by state Senator Marc Pacheco of Taunton to write the paper as part of a larger project to examine both the history and political future of the 1993 Taxpayer Protection Act, of which Pacheco, of course, was the chief author and sponsor.

In the Public Interest describes itself as “a comprehensive research and policy center on privatization and responsible contracting.”  As the Center notes, our paper presents evidence that the Pacheco Law has saved the taxpayers hundreds of millions of dollars in the past quarter century.

Thus far, Senator Pacheco’s project has received some preliminary funding from a public employee union in New York, the Amalgamated Transit Union. I should note that the funding the project has received pales in comparison with the huge amounts of money that have been spent to have organizations such as the Pioneer Institute vilify the Pacheco Law.

As I’ve noted on this blogsite in the past, the opponents of the Pacheco Law, which include Massachusetts Governor Charlie Baker, The Boston Globe’s editorial page, the Pioneer Institute, and many others in neo-liberal political circles, claim the law has almost completely stifled innovative efforts to privatize public services in Massachusetts.

But as we pointed out in the paper, what the Pacheco Law has really done has been to ensure in several cases that a comprehensive cost-benefit analysis was undertaken before state-run services in Massachusetts could be privatized. It’s not innovative if taxpayers end up paying more for a service, and it’s not innovative if the quality of the service is worsened rather than improved.

Privatization, of course, has been the focus of a long-running debate between those who claim that government is inherently inept and wasteful, and those who claim that the sole purpose of privatization is to enrich corporate interests that want to make easy money from government contracts. In Massachusetts, arguments over the Pacheco Law have usually been cast in those mutually exclusive terms.

Left out of the discussion, however, has been a third view, which is that privatization can work if it is subject to adequate competition, analysis, and oversight, and that policy measures such as the Pacheco Law provide the necessary analysis.  That’s the view we took in our paper.

Privatization proponents have benefited from a loophole in the Pacheco Law 

The basic requirement of the Pacheco Law is that before services can be outsourced, the state auditor must affirm that the move will actually save money, and that the resulting privatized services will be equal or better than the services provided by state employees.

Opponents of the Pacheco Law never mention the fact that 75 percent of the privatization applications made to the state auditor since the law’s inception have been approved. In addition, a major push for privatization in the field of human services has taken place in Massachusetts without triggering the Pacheco Law at all.

As we noted in the paper,  successive administrations from Governor William Weld onwards have exploited what is essentially a loophole in the Pacheco Law with respect to human services.  The loophole stems from language in the law implying that services can be privatized and subject to the law’s cost analysis requirement only if the services are currently performed by state employees.

That language has allowed successive administrations to assert that they are not outsourcing if they simply close a state-run residential center for the developmentally disabled, for example, and subsequently send either the former residents or others waiting for services to a privatized residential facility.

The Pioneer Institute erroneously contended the Pacheco Law lost money for the MBTA

As our paper points out, the Pacheco Law was invoked when the MBTA tried to outsource the operation and maintenance of Boston area bus lines in 1997. The state auditor concluded, after a review required by the law, that the agency had failed to prove that privatization would save money, and in fact, that outsourcing the bus service would actually cost the state $73 million more than keeping the function in-house.

We have calculated that without the Pacheco Law, the MBTA would have gone ahead and outsourced the bus service, resulting in compounded losses exceeding $200 million over the ensuing years. Those calculations were based on my own finding in 2015 that the cost of contracted commuter rail services at the MBTA actually rose faster since 2000 than did in-house bus service costs.

Our paper’s combined findings stand in sharp contrast to a claim made in an influential report by the Pioneer Institute in 2015 that the failure to privatize the bus service ultimately cost the MBTA $450 million.

In fact, the Pioneer study had inappropriately compared  bids proposed by the two prospective bus service vendors with actual costs incurred by the MBTA in 1997, and applied the same cost-escalation factor to the bids and in-house costs between 2003 and 2013.

The Pacheco Law requires agencies like the MBTA to compare “apples to apples” bids under which both numbers represent a projection, i.e. a contracted projection against a projection of in-house services delivered in a “cost efficient manner.”

Ultimately, as we pointed out in our paper, both our cost calculations and the Pioneer’s report were based on back-of-the-envelope calculations that, even if done correctly, fell far short of the comprehensive cost analysis required by the Pacheco Law.

Recent history of privatization in Massachusetts 

Our paper attempts to place the Pacheco Law in the context of the history of privatization in Massachusetts from the 1980s onward. The law was a response to a worldwide privatization trend beginning in the 1980s. And one of  the most ardent proponents of the trend was William Weld, who became governor of Massachusetts in 1991 “with an unabashed conviction that less direct government service provision guaranteed better outcomes.”

But while outsourcing in itself wasn’t new when Weld took office, the difference now was that “neoliberal contracting or privatizing had become a matter of ideology, a belief that the private sector is always competent and the public sector inherently deficient.”

In Massachusetts and elsewhere, a major effort was begun to privatize governmental services and functions with little supporting analysis and few checks or balances.

Among those working under Weld to carry out the rush to privatize was Charlie Baker, at the time secretary of human services and later secretary of administration and finance. Baker came highly recommended to the administration by the Pioneer Institute.

Privatization proposals “flew in from near and far” – from local think tanks like the Pioneer Institute and from “antigovernment hard hitters” like the Heritage Foundation and the Cato Institute, the latter declaring Weld the best governor in America.

Weld’s subsequent closings of the state-run Paul A. Dever State School in Taunton and nearby Lakeville Hospital “hastily pushed families dependent on chronic care away from places they had called home for decades.” The equipment at Lakeville was given away to the private Parkwood Hospital in New Bedford at no cost.

As a Globe Spotlight series in 1993 showed, the Weld administration and its privatization arrangements “were deeply conflicted by special interest money, lobbyist motivated lunches, and massive corporate campaign donations.”

In this context, Pacheco, whose Senate district included Dever and Lakeville, first proposed his legislation while he was a member of the House in 1992. It didn’t pass then, but did pass the following year after Pacheco had been elected to the Senate.

As noted above, however, Weld and subsequent governors, Republican and Democratic, continued to shut facilities for the developmentally disabled and to expand the private system of corporate, provider-run group homes without invoking the Pacheco Law.

Costs misrepresented

Both the Romney and Patrick administrations claimed that privatized care for the developmentally disabled was cheaper per resident than state-run care by comparing the average cost per resident in privatized residences to a calculated cost of care in state-run developmental centers such as the now-closed Fernald Developmental Center.  This comparison was disingenuous; Fernald served a population with a much more profound level of intellectual disability and more severe medical needs than the population in the privatized community system.

Their cost comparison method also overstated the state costs per resident. The administrations simply divided the total Fernald budget by its population of residents to determine the cost of care, overlooking the portion of Fernald’s budget that went to programs that benefited community-based residents.

In bypassing the Pacheco Law, these administrations never seriously considered proposals to operate developmental centers more efficiently, something the law explicitly calls for.

Had the cost and quality analyses required by the Pacheco Law been used in the contracting of services for the developmentally disabled in Massachusetts since the 1990s, a better understanding of the costs involved in that process and higher quality care would have resulted.

The Pacheco Law would have:

1) ensured that all potential costs were fully analyzed prior to closing state-operated facilities, and

2) ensured the quality of care run by corporate providers be equal or better that state-run facilities.

Privatization can work if it is subject to competition, analysis and oversight 

Our paper concludes with the observation that governments may be able to maintain quality of service and reduce their bottom line if there exists a competitive private market that has a known quality and price. In those instances, it can often be shown that costs can be reduced by privatizing services.

However, unproven generalizations about the cost effectiveness of privatization must be subject to scrutiny.

In sum, as we noted, the Pacheco Law’s 25-year anniversary, which occurred last month, “provides a ripe occasion to start a national dialogue about how we restore vibrancy to a public sector that has been badly damaged by ideological attacks on government.”

New data provide more evidence that the DPPC should do all abuse investigations

January 15, 2019 1 comment

New data provided by the Massachusetts Disabled Persons Protection Commission (DPPC) and the Department of Developmental Services (DDS) raise further questions about the ability of DDS, in particular, to adequately investigate cases of abuse and neglect within its system.

As such, we think the data provide yet a further reason to place all investigative resources and functions within one independent agency — the DPPC.

The latest data, received under Public Records Law requests to both agencies, show that not only does the DPPC have fewer abuse investigators than does DDS, but the DPPC investigators themselves appear to have lower caseloads than do their counterparts at DDS.

Yet, the DPPC is the state’s sole independent agency charged with investigating abuse and neglect of disabled adults. As we have reported, the DPPC is so poorly funded that it has to refer most of the complaints it receives to DDS and other service-providing agencies to investigate.

The caseload data comes on top of previous data we received showing that the DPPC investigators tend to find that a higher percentage of abuse allegations have merit than do their counterparts at DDS. Given the DDS caseloads are higher than the DPPC’s, it appears possible that DDS investigators aren’t able to do investigations as thoroughly DPPC investigators.

The latest data obtained from DDS and the DPPC also show that the number of substantiations of abuse allegations in general has been dropping in investigations done, particularly by DDS.

DDS’s main function is to manage and oversee care to the intellectually and developmentally disabled through a network of both state-operated and corporate provider-operated group homes and other facilities. Because of that, DDS appears to face a conflict of interest in investigating allegations of abuse and neglect in its own system.

Higher DDS caseloads

The chart we created below shows the consistently higher average caseloads that DDS investigators have had compared with the DPPC’s investigators, although the DPPC’s caseloads have been rising in recent years.

Between Fiscal 2010 and 2018, DDS’s yearly caseload has averaged 51.9 abuse investigations per investigator, while the DPPC’s average caseload has been 27.9.  (DDS has employed an average of 31.4 abuse investigators each year while the DPPC has employed an average of 4.6 investigators each year in that time frame.)

chart on dppc and dds investigation caseloads fy10-18

Source: DPPC and DDS data

Based on the DPPC’s data, our second chart below depicts the dropping abuse substantiation rate each year for both the DPPC and DDS.

chart on total dppc and dds abuse substantiation rate fy 04-18

According to the data, the annual percentage of abuse allegations that have been substantiated by DDS and the DPPC dropped from a high of 28% in Fiscal 2006 to about 13% in Fiscal 2018. The conclusion we draw from this particular data is that funding to both agencies for investigations has been increasingly inadequate.

The DPPC’s higher abuse substantiation rate since Fiscal 2012

The data going back to Fiscal 2004 show that the DPPC began consistently substantiating a higher percentage of abuse allegations than DDS starting in Fiscal 2012. There were three years between Fiscal 2004 and 2011 in which DDS substantiated a higher percentage of allegations than did the DPPC.

There don’t seem to be clear reasons for either the relatively higher abuse substantiation rate by the DPPC or the dropping substantiation rate by DDS, in particular, although, as noted, one reason might be DDS’s relatively high caseloads.

The DPPC’s policy to reserve more serious cases for itself

It’s possible that the DPPC has had a higher abuse substantiation rate because the agency has tended to reserve what might be considered the most serious abuse cases to itself, and that those more serious cases would be more likely to be substantiated than would the less serious cases assigned to DDS.

At first glance, a policy document we received from the DPPC on assigning cases would seem to support that theory.  The policy lists a number of instances in which the DPPC assigns more serious cases to itself provided that it has the resources to do so.

But the DPPC policy is dated 1998. There doesn’t seem to be a clear pattern of abuse substantiations from either the DPPC or DDS that lines up with the policy or its revisions in 2013 and 2016.

DDS says DPPC substantiation data misleading

In a response earlier this month to our questions, DDS maintained that the data we used from the DPPC doesn’t reflect the true abuse substantiation rates for DDS.

The DDS response included a lengthy explanation for why this is so, but the gist of the explanation seems to be that the DPPC data doesn’t account for all of the cases that DDS investigates, and that the DPPC counts the cases differently than DDS. We don’t think, however, that any such differences would affect the overall results of our analysis because we used the DPPC’s substantiation-rate data for both the DPPC and DDS, and we are assuming that the DPPC has been consistent in how it accounts for the cases investigated by both agencies.

The DDS’s conflict of interest

As we’ve stated, the data point toward the logic of having all abuse investigations done by one independent agency. The current system under which abuse investigations are done by separate agencies makes no sense, and leads at the very least to the perception that the investigations done by DDS are not thorough and cannot be relied upon.

As we reported in our January 2004 issue of The COFAR Voice, the DPPC itself issued a position statement at that time charging that DDS (then the Department of Mental Retardation) and other state agencies were “vulnerable to pressures that could compromise the integrity of their investigative findings (in abuse cases).”

Filing legislation to place in investigative resources solely within the DPPC

We will share our findings regarding the DPPC and DDS investigation data with the Legislature’s Children, Families, and Persons with Disabilities Committee. We hope these findings will concern them as much as they concern us.

We are also seeking to file legislation in the current legislative session to place all resources for abuse and neglect investigations within the DPPC, and to place all DDS provider licensure and monitoring resources within an independent state Office of Quality Assurance.

The Children and Families Committee initiated a review of the DDS system in January of 2018 and called in the DDS commissioner and DPPC executive director on two occasions last year to testify about abuse and neglect in the DDS system. Both officials insisted the system is functioning smoothly and offered no suggestions for changing it.

The families in our organization know that the system isn’t fine and it isn’t running smoothly.  The Children and Families Committee, however, has not allowed those family members and guardians to testify publicly about their experience with the system.

We hope things finally begin to change in the new legislative session, which just started this month, and that the Legislature will begin to take concrete steps to protect the developmentally disabled in this state from abuse and neglect.

A clear starting point would be to give the DPPC, the state’s independent abuse investigation agency for the disabled, the necessary tools and authority to do the job.

Illinois transparency laws could be a model for programs providing care to disabled in Massachusetts

January 2, 2019 5 comments

When it comes to the public’s right to know, Massachusetts state government has not been in the forefront in recent years, and issues concerning the developmentally disabled appear to be no exception.

Not only are investigative reports on abuse and neglect of the developmentally disabled largely kept secret in this state, but those reports are primarily done by the same agency that provides and manages services for the disabled. In those situations, there appears to be little incentive to let the public in on what the investigations have revealed.

As the new two-year legislative session begins in Massachusetts, COFAR will push for legislation that would make information about the care in the Department of Developmental Services system more available to the public. One place to start appears to be the adoption of online information about performance of DDS provider agencies and abuse and neglect in that system.

Such information, which exists in Illinois, could help families and guardians in making the difficult decision on placement of their loved ones in DDS-funded facilities.

Illinois abuse data on providers could be a model for Massachusetts

Illinois has both a human services “provider scorecard,” which offers comparative information about group home provider performance, and an online database that allows comparisons of numbers of abuse allegations and abuse substantiations among individual providers in the state. One caveat about Illinois is that these information sources appear to be extremely difficult to locate on that state’s Department of Human Services website.

The Illinois database appears to be a response to a series of articles in 2016 by The Chicago Tribune, which had described a system of privatized group homes in that state in which “caregivers often failed to provide basic care while regulators cloaked harm and death with secrecy and silence.”  The relative lack of coverage of these issues by mainstream media outlets in Massachusetts, and the relative lack of interest as well in the Legislature, may explain why few if any of these sources of online information are available in this state.

The DDS in Massachusetts does provide online provider licensure reports. But these reports on individual providers tend to contain vague and generic findings and recommendations that make comparisons among providers difficult. The licensure reports, which are also difficult to find on the DDS website, don’t reveal or discuss findings of abuse or neglect within the residential or day program facilities.

At least some of that comparative information that is missing in Massachusetts can be found on the Illinois Human Services Department website.

Provider Scorecard

Among the comparative online information available about the Illinois human services system are licensure scores for providers in the state known as BALC scores. As the website notes, the BALC scores are divided into several categories:

A (BALC) score of 100% indicates the provider is in full or acceptable compliance;

93-99% is considered an acceptable standing;

80-92% results in a written “Notice of Violations” and requires an acceptable plan of corrections;

70-79% indicates the agency is minimally compliant and will be on probation for up to 90 days; and

69% and below results in the disallowance of new admissions.

While the DDS licensure system in Massachusetts provides ratings for providers on dozens of individual measures, the ratings are difficult to understand, and there is no way for the public to compare providers on overall performance as there is on the Illinois provider scorecard site.

Also potentially important on the Illinois provider scorecard are comparative ratings of the average health risk and average maladaptive behavior of the residents of provider residences. No such information is available in Massachusetts.

The Chicago Tribune stated that the Illinois provider scorecard includes group home inspection results and links to online copies of investigative findings involving abuse, neglect or financial exploitation. We were not able, however, to locate those links.

Disclosure of data would supplement an abuse registry

The types of online information available or reportedly available in Illinois would be something that would potentially supplement a proposed registry in Massachusetts of caregivers who have had abuse charges substantiated against them.

The proposed registry in Massachusetts came close to enactment last year, but ultimately was not approved. Even that registry, however, would itself not be transparent in that the names of the persons listed in it would not be made public under the legislation that was under consideration in the just-concluded 2017-2018 legislative session. So it is important that there be information about DDS-funded programs that individuals, families, and guardians can consult to judge the performance of providers for themselves.

The Illinois abuse data list needs to be viewed cautiously, but we think most people looking for residential placements would do that.

For instance, in the Illinois substantiated abuse database, the most important column in the data appears to be the number of substantiated abuse allegations per 100 people served for each provider.

That data can vary widely from year to year, even for the same provider. As the charts we developed from the data for two of the providers show, the Village Inn Cobden had a higher rate of substantiated abuse than the Royal Living Center in Fiscal 2017, but the Village Inn had zero substantiated abuse allegations in Fiscal 2015 and 2016. In both cases, the number of allegations of abuse rose substantially over the three-year period.

 

Illinois abuse allegations charts Royal and Village

Public disclosure needed of abuse investigation reports

According to the Chicago Tribune, Illinois Human Services Secretary James Dimas told Senate and House lawmakers that his department had launched reform measures to heighten enforcement of group homes statewide and increase public transparency of the system.

The Tribune stated that:

…one of the most sweeping reforms outlined by Dimas would provide limited public access to previously sealed investigative files. The department is working with the Illinois attorney general’s office to provide group home addresses and full enforcement histories to families and guardians.

“I’m committed to transparency,” said Dimas, who was appointed in May 2015 by Illinois Gov. Bruce Rauner.

We think similar transparency is needed for investigative reports done by the Massachusetts Disabled Persons Protection Commission (DPPC). As we have reported, the DPPC’s regulations seem to go well beyond the agency’s enabling statute in stating that “the records of the Commission shall not be considered ‘public records’…” (my emphasis).

The DPPC regulations exempt from disclosure all “investigative materials” compiled by the agency. And the regulations state that the DPPC can determine that “the mere removal of identifying personal data would be insufficient to protect existing privacy interests, or that disclosure would not be in the public interest…”

We maintain that the DPPC’s enabling statute does not state that DPPC records are not public or that all investigative materials are exempt. Additional legislation may be needed clarifying this.

Finally, we would argue that DDS itself should not be involved either in investigating abuse or neglect within its own system, or even in licensing provider-run facilities. Both of those ongoing practices lead to conflicts of interest for DDS and to reduced transparency.

That’s why we will support legislation in the new session along the lines of a bill proposed by Representative Angelo Scaccia,which would take the group home licensing function out of DDS and make it an independent function. That legislation could be combined or paired with legislation to take abuse and neglect investigative functions away from DDS and put them into the DPPC.

Ultimately, we want to see a system of care for persons with developmental disabilities in Massachusetts that is both transparent and free of serious conflicts of interest. We hope the media and the Legislature are truly interested in those goals as well.