(Cross-posted from The COFAR Blogsite)
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.
Not a stellar record, to be sure. Specifically regarding the closure of sheltered workshops, many people had doubts about the so-called “Employment First” program when it was first rolled out. I attended a couple of local DDS presentations where parents/guardians were skeptical that meaningful jobs could be found for all their loved ones, who were already participating in sheltered workshop programs that they enjoyed. Although their loved ones were being paid far below minimum wage, they were still appreciative of the small paychecks they received for their work, and enjoyed the socialization. It was a pie-in-the-sky concept that private employers would rush to participate in a hiring program that would require extra expense on their parts, particularly in providing mentors to train/assist individuals with developmental disabilities. The “day program” alternatives are often understaffed babysitting situations with few meaningful activities, let alone a sense of self-accomplishment.
Like the 700 displaced Long Island Refugees in our midst…what I am finding is every year there is less available from the state to help, comfort, or train the folks who need supports the most. Every…single…year.
It is not at all surprising that persons misplaced from sheltered workshops have not been found meaningful work elsewhere. The real story there is who actually benefited from the closures, and it wasn’t the participants.
But, frankly it’s embarrassing that those who have been elected to represent us have not seen fit to do the right thing–for seventeen years–for families by the family rights bill, instead apparently deferring to the DDS. The problem with that is that representatives should be representing their constituents, not the status quo.
It’s time for some of these “representatives” to move along.