COFAR blog

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.