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The Massachusetts Legislature and governor are leaving the state’s most vulnerable citizens behind

July 26, 2016 3 comments

After wrapping up its annual budget deliberations last month, the Massachusetts Legislature is practically done for the year.

There are a couple of formal sessions of the House and Senate still to be held before the end of July, and then there will be only “informal sessions” through the end of the year, which are usually for things like renaming streets.  The two-year-long 189th session of the General Assembly will then come to an official end at the beginning of January of next year.

Unfortunately, you have only to glance through our July newsletter to see how little both the Legislature and the administration of Governor Charlie Baker have accomplished when it comes to the care of people with developmental disabilities.  Here are some examples from the newsletter:

The Fiscal Year 2017 state budget

When it comes the Fiscal 2017 budget, the Legislature essentially rubber-stamped the funding proposals submitted last January by Baker for programs for the developmentally disabled (“‘Dismal’ FY ’17 budget approved for DDS,” Page 1).

In most of the cases in which the Legislature did make changes to the governor’s budget, the changes were not good. With only one or two exceptions, the funding proposals approved by the Democratic-controlled House and Senate were actually lower even than what the Republican governor had proposed.

As the newsletter points out in an article on Page 3, one of the Legislature’s most egregious failures was its refusal to go along with Baker’s proposed funding for a program to place disabled people in jobs in the mainstream workforce (“Legislature fails to fund jobs programs for DDS clients”).  This budgetary line item was supposed to ensure that developmentally disabled persons being moved out of sheltered workshops, which are being closed by the Baker administration, would ultimately be placed in mainstream jobs.

COFAR has strongly opposed the sheltered workshops closures, arguing that those jobs in the mainstream workforce don’t really exist to replace the workshop programs.  But the Legislature bought into the closures of the workshops in Fiscal 2015 by providing enough funding to the Department of Developmental Services to transfer hundreds of clients out of the workshops and initially into DDS day programs.

For the current fiscal year, however, the Legislature has not only approved $4.6 million less for the mainstream workforce jobs line item than Baker proposed, but both the Legislature and Baker are underfunding the separate day program line item by $10 million.  The result will be more crowded day programs with less staff and less meaningful activities for the clients.

As the newsletter notes on Page 3, the Legislature did approve a $100,000 increase in the budget of the Disabled Persons Protection Commission, which Baker had proposed level funding.  But that is less than a 2 percent increase from the previous fiscal year when adjusted for inflation, and is less than the $350,000 increase that the Senate itself had proposed.

The family rights bill

For 17 years, State Representative David Linsky has filed a bill in the Legislature that would boost the rights of family members in guardianship cases involving persons with developmental disabilities.  The bill would require probate judges to presume a disabled person’s parents are suitable to be his or her guardian.

This session’s version of the bill (H. 1459) seemed for a while to have a degree of political momentum that it had never had in past years in which it would perennially die in committee. For the first time, the bill received the endorsement of the Massachusetts Developmental Disabilities Council (MDDC).  The MDDC, a state-run organization that identifies priorities for care for people with those disabilities, listed the bill as one of its legislative priorities for 2015- 2016.

While the bill has long had COFAR’s support, it was also supported in this session by the Arc of Massachusetts.  In fact, we know of no advocacy organization that opposes the measure.  And yet the bill remained stuck in the Judiciary Committee for more than a year.

In January of this year, both Rep. Linsky and state Senator Richard Ross wrote a letter to the Judiciary Committee co-chairs, urging them to report the bill out of the committee favorably so that the measure could reach the floors of the House and Senate for enactment.  Ross and Linsky are the local legislators of Stan McDonald, who has been fighting for years to gain guardianship of his developmentally disabled son, Andy.

Despite all of that support for H. 1459, the Judiciary co-chairs — Senator William Brownsberger and Rep. John Fernandes — sent the bill in March to a study, a euphemism for legislative death. (See our story on Page 5 of the newsletter: “Guardianship bill dies in committee.”)

We are still at a loss to explain why this critically important bill never gets past the committee stage in the legislative process.  We think it may be that the bill is actually opposed by DDS, which does not want to lose any of its power in recommending attorneys and corporate entities as guardians of developmentally disabled individuals.

The medical training bill

After reporting on a case in which an intellectually disabled man died after having been repeatedly turned away from a hospital, we were initially heartened to see that a bill had been filed in the Legislature to require that medical personnel receive training in treating people with developmental disabilities.

The hospital case appeared to raise questions about the ability of the emergency room staff at the hospital to correctly diagnose the condition of the man who may have been non-verbal. However, the bill, like the family rights bill discussed above, appeared to be stuck in committee — in this case, the Public Health Committee.

In March, it briefly appeared that the bill (H. 1932) would advance in the legislative process. We received a notification from the Public Health Committee that the bill had been approved. But less than a month later, we found out that the committee co-chairs had actually authorized a substitute bill (S. 2211) in place of the original bill, and had done that behind closed doors and apparently without a vote of the full committee.

Instead of requiring training of hospital personnel in the treatment of developmentally disabled persons, the new bill expands an existing training and accreditation program operating in four medical and nursing schools. (See our story on Page 5 of the newsletter: “Committee quietly changes medical training legislation.”)

The training and accreditation existing program, known as Operation House Call, has been run by the Arc of Massachusetts for several years. The program provides instruction to medical and nursing school students in treating people with developmental disabilities in hospital settings, including people with autism.  While Operation House Call appears to be a worthwhile program, it is much more limited in scope than what had been proposed in the original legislation.

In addition to requiring the training of actual hospital personnel, the original bill (H. 1932) would have required the Executive Office of Health and Human Services to evaluate discrimination against developmentally disabled persons and to issue regulations to reduce the impact of “disparities in outcomes” for those people in medical settings.  That provision was not included in the new bill (S. 2211).

Despite its reduced scope, it now appears that even S. 2211 will never see the legislative light of day. A staff member of the Health Care Financing Committee, to which the bill was referred in April, told us today that the committee had referred the bill to a study (just as in the case of the family rights bill, discussed above).

Other DDS bills remain in limbo

Meanwhile, a whole slew of other DDS-related bills have been stalled for months in the House and Senate Ways and Means Committees, and their fates remain uncertain at best.  The bills include measures to expand Turning-22 services (S. 2223), expand civil rights protections to persons with disabilities (H. 121) , and to create new housing for persons with disabilities (S. 2202).

Unless these bills are reported out by those committees before the end of this month, they would have to be approved during the informal session period.  It seems unlikely that substantive bills such as these would be approved in informal sessions in which just a few legislators are present and in which each measure could be derailed based solely on an objection by one member.  We’re not sure it’s even good public policy to approve substantive legislation in informal sessions.

What the Legislature and the Baker administration have accomplished has been to consistently boost funding for privatized care at the expense of state-run care.   What they haven’t done is to address the many interrelated problems and issues that are endemic to the DDS system.

Those issues include continuing abuse and neglect in the largely privatized group home system. They include the marginalization of families by DDS, its providers, and the probate court system in the decision making regarding care of persons with developmental disabilities.

Those problems also include high rates of incarceration of persons with developmental disabilities in prisons. In our newsletters and blog posts, we have detailed two of these cases — one in which an intellectually disabled man was placed for an indefinite period in the Worcester House of Correction following an alleged fatal assault, and another in which an intellectually disabled resident of a group home continues to face criminal charges following an assault on staff workers.

We can’t remember the last time any legislative committees have even held hearings on these pressing and interrelated issues.  A truly caring legislature and administration would work together on behalf of their state’s most vulnerable citizens.  The State of Massachusetts is instead leaving its most vulnerable citizens behind.

Limited federal IG probe faults state’s reporting on group home abuse in MA

July 20, 2016 2 comments

In one of the few investigations of the community-based system of care for the developmentally disabled, the Inspector General for the U.S. Department of Health and Human Services last week disclosed critical shortcomings in the process in Massachusetts for reporting abuse and neglect.

A report issued by the IG found that incidents of abuse and neglect in group homes were not regularly reported to investigators.  The report noted that of a sample of 587 visits by group home residents to hospital emergency rooms, the group homes had failed to report 88 –or 15 percent — of them to the Department of Developmental Services.

In addition, DDS itself and the group homes did not report 58 percent of 175 “critical incidents” to the Disabled Persons Protection Commission, as required by state regulations.  And 29 percent of incident reports sampled by the IG did not contain “action steps” to protect individuals involved from future injury.

COFAR has long maintained that the state’s privatized group home system is inadequately overseen and prone to abuse and neglect due to relatively low levels of pay and training, and high turnover among staff.   Even the providers themselves acknowledge those problems.  Yet the state routinely relicenses  the providers to operate homes even though there are clear gaps in the prevention and reporting of abuse and neglect.

The Massachusetts report is the third report issued by the HHS IG thus far on abuse and neglect in individual states.  Last year, the IG issued a report on New York State; and in May, the agency issued a report on Connecticut.

U.S. Senator Chris Murphy of Connecticut, who originally requested in 2013 that the HHS IG investigate abuse and neglect in group homes around the country, commented this week on the findings, at least concerning Connecticut and Massachusetts.  In a statement issued on Monday, Murphy said he will introduce federal legislation to require reporting of incidents of abuse and neglect, and training of direct care staff in group homes.

Murphy’s office did not respond to a request from COFAR earlier this year for comment on the New York report. As we noted in February, the New York report contained no recommendations and no critical findings, and was only six pages long.

The Massachusetts report, in contrast, was 33 pages long.  Like the Massachusetts report, the Connecticut report, which was issued in May, found numerous failures to report abuse and neglect to state authorities.

Despite its thoroughness in examining the incident reporting process in Massachusetts, we believe even the IG’s Massachusetts report was limited in its scope. We think it could have gone much further in investigating the major problems posed by the privatized residential system.

In requesting the IG investigation, Murphy’s 2013 letter to Daniel Levinson, the HHS IG, emphasized the role of privatization in causing “a race to he bottom in our health care system. Privatization of care may mean lower costs but without the proper oversight and requirements for well-trained staff,” Murphy stated.

In limiting its report primarily to findings of failures to report instances of abuse and neglect, the IG has focused on a small piece of the overall problem.  The larger issue concerns not only the level of abuse and neglect in the privatized system, but the overall adequacy of care that exists in it.

The HHS IG  report did not examine the impact of privatization on the quality of care in the group home system, and did not specify whether the residents whose emergency room visits the IG sampled lived in privatized or state-run group homes.

We have found that the state’s ongoing privatization of residential services has resulted in a corporate, bottom-line approach to care of the disabled. Moreover, DDS has insisted on steering people waiting for residential care to the privatized group home system, all the while failing to provide state-run homes as an option.

The case of Kathleen Murphy is an example.  As we have previously reported, Kathleen’s sister and guardian, Patricia Murphy, and members of her family began trying to move Kathleen from a corporate provider-operated group home to a state-operated residence in 1998.  DDS continually declined to move her, despite a federal law requiring that the Department provide disabled individuals with a choice among all available alternatives for residential care.

Patricia Murphy finally filed a federal lawsuit in 2013, which resulted in the placement of Kathleen in a state-operated residence.  (By way of disclosure, Kathleen Murphy is represented in the case by Tom Frain, who is COFAR’s Board president.)

Patricia Murphy contends that Kathleen suffered nearly 16 years of physical abuse, sexual assaults, emotional torment, and medical neglect in provider-operated group homes.  She says her sister was also grossly over-drugged in those facilities, and her clothing, jewelry and spending money were stolen.

The state-operated residence to which Kathleen was finally placed is “the best thing that ever happened to her,” Patricia said.  She said that since moving to the state-operated group home, Kathleen has lost 45 pounds, is being fed nutritious food, is off all psychotropic drugs, and her blood pressure is under control.

Yet these experiences as reported by families are apparently of little interest to the federal government, in particular, which, like the state, is committed to further privatization of residential services for the developmentally disabled.  While the U.S. Department of Justice has placed a major emphasis in recent years on investigating and closing down state-operated facilities and services for the disabled, there have been few if any comprehensive investigations of the privatized group home system.

Unfortunately, the Massachusetts Legislature has adopted a look-the-other-way attitude regarding these problems.  As far as we know, no legislative committee has scheduled any hearings in recent memory on the problem of abuse and neglect in the DDS system.

Both the Legislature and the Baker administration have continued a policy of boosting funding for further privatization of services while slowly starving the much more responsive state-run group home system of budgetary support.

We hope that the IG report, limited as it was, spurs the Legislature to finally pay attention to the big issues that surround the care of persons with developmental disabilities in Massachusetts. Those issues concern privatization and its impact on abuse, neglect, and the quality of care in general.

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