(Cross-posted from The COFAR Blog)
The state Department of Developmental Services is proposing changes to its regulations that we believe will take away guardian and family rights and water down the scope of services that are listed in individual clients’ care plans.
We at COFAR view these proposed changes as an attempt to reverse critically important gains made by the intellectually disabled and their families and guardians in Massachusetts from the 1970s through the 1990s.
We’re joined in our concerns by the Wrentham Association, a COFAR member organization and one of the original plaintiffs in the landmark Ricci v. Okin federal consent decree case that upgraded care of the intellectually disabled in Massachusetts. In written comments submitted to DDS last week, the Wrentham family group maintained (and we concur) that the proposed changes to the regulations would violate the historic 1993 Disengagement Order in the Ricci case of U.S. District Court Judge Joseph Tauro.
As the Wrentham Association letter noted, the Disengagement Order requires DDS “to continually evaluate the needs of each individual class member and to develop strategies to address those needs.” Several of the proposed changes to the DDS regulations “would substantially dilute” client care plans, known as Individual Support Plans or ISPs, and would exclude or limit family participation in the ISP process, the letter stated.
As we noted in our own comments on the proposed regulations:
The ISP process is fundamental to the provision of adequate supports and services to some of the most fragile and vulnerable members of our society…The protection of the rights of the individuals, family members, and guardians involved is central to the ISP process and the Disengagement Order. We therefore strongly oppose efforts to begin chipping away at those rights, as the proposed regulations appear to do.
Among the key proposed changes by DDS is the elimination of the requirement that services be listed in each client’s ISP “without regard to the availability” of such services. A second proposed change would take away the current requirement that the ISP contain strategies to address the “unmet support needs” of clients.
These were key concerns of Judge Tauro’s Disengagement Order — that the ISPs be drafted first and foremost to identify the needs of the client and that the Department then come up with funding strategies to meet those needs. The proposed changes would eliminate that dynamic.
In addition, DDS is proposing to change its regulations to take away rights of family members to participate in the ISP process and even to schedule a meeting with a DDS service coordinator to have the ISP explained to them.
- Diane Booher, a Fernald guardian, testifies against proposed DDS regulations changes during a sparsely attended public hearing at the Worcester Public Library on June 15.
In our comments submitted to DDS, we added that the proposed changes would also appear to violate a key provision of the federal Developmental Disabilities Assistance and Bill of Rights Act, which states that individuals with developmental disabilities and their families are the “primary decision-makers” regarding the services and supports they receive.
On Friday of last week (June 15), DDS held a public hearing on the proposed regulations, which, to my surprise, attracted few attendees. I arrived at the scheduled start of the hearing at the Worcester Public Library at 10 a.m. and was the only person in the audience when DDS Commissioner Elin Howe opened the proceedings. Soon after, two other people arrived to testify — Diane Booher, a Ricci class representative from the Fernald Developmental Center and the guardian of three men who still reside there; and a representative of Vinfen, a major nonprofit operator of group homes in Massachusetts and other states.
Booher maintained in her written testimony that “there is no question” that the proposed changes to the regulations would violate Judge Tauro’s Disengagement Order.
The Vinfen representative appeared to have some technical issues with the proposed changes, but no major objections — a position I didn’t find surprising. Vinfen and other group home providers will get the same state funding whether the ISPs contain strategies for unmet needs or not.
I looked around for someone from the Arc of Massachusetts. Surely, they would be rallying to defend the rights of families and DDS clients? I guess not.
At about 10:45 a.m., Commissioner Howe called a recess in the hearing, after the three of us had testified and no one was left to speak. I left shortly after that. If a flood of people arrived anytime after I left and before the scheduled close of the hearing at 3 p.m., I haven’t heard about it.
In addition to the proposed changes that would water down the scope of services in ISPs, here are some of the other proposed changes to the regulations (115 CMR 6.20-6.25), which we find the most troubling:
- Addition of language giving guardians and individuals the authority to exclude family members from participating in ISP planning and the ISP process. This is particularly concerning to us in cases in which corporations or attorneys are appointed as guardians of individuals and are paid by DDS.
- Exclusion of family members from the list of persons receiving periodic updates from group home providers regarding the implementation of the ISP.
- Removal of language stating that families and guardians have a “right” to a meeting with the service coordinator to have the ISP explained to them within 10 days of its receipt.
- Removal of language requiring the service coordinator to explain ISP appeal rights to individuals, guardians, and family members.
- Removal of language that a service coordinator must have the approval of the family to waive a meeting to discuss changes to the ISP.
And I have enough in my day to day life that requires both prayer and meditation to maintain my mental, emotional, and spiritual equilibrium.
I don’t understand why DDS wants to change their regulations—they don’t follow them anyway!
I also question why these regulations need to be changed. With the exception of a small percentage of people with special eligibility, DDS already has unfettered authority and total discretion with regard to determining eligibility for services and prioritization of services.
There is a lot about these changes that bother me. In addition to the items identified here, I really object to the complete removal of the term “quality of life” from the regulations. Basically what the federal court did for all individuals with mental retardation/ developmental/intellectural disability (just to cover whatever the pc term is today) was to give them “quality of life”. Without quality of life, what is the point of regulations?
Without quality of life, what is the very point of life for the mentally retarded and developmentally disabled in MA?
It is indeed troubling that this publicly-funded government agency forges ahead with their misplaced priorities, seemingly without regard for the wishes of families and guardians.
And, year after year, funding for their administration grows while services for individuals are cut.
They are setting up a system whereby they do whatever they want and those families with resources are able to access services, and the rest are left behind.
Another thing I find troubling here is what seems to be a lack of interest regarding these changes. Its reported that DDS provides services to more than 30,000 individuals. The proposed changes will potentially effect each of these individuals lives yet there are only 3 commenters here (1 on COFAR blog last time I checked) and 3 people at the public hearings.
Where are the advocates who get their backs up about something as inconsequential as the use of a word (like retardation) but are silent on changes to regulations that restrict the rights of individuals, give DDS more authoriy and fundamentally change how services are delivered?
These proposals to peck away at the Individual Service Plan leave me with the distinct image of Ben Ricci turning over in his grave, while Department of Developmental Services officials dance on it. Ben was the primary architect of the ISP, his vision to remedy the neglect, abuse, and shortcomings for care of the developmentally disabled in Ricci v. Greenblatt in 1973. In his federal court, Judge Joseph L. Tauro issued the Consent Decree that led to the ISP becoming part of the then Department of Mental Retardation regulations in 1975.
When I first learned of the current proposed ISP changes in a chance meeting with Robin Harmatz, Area Director of the Holyoke/Chicopee office, she told me that Advocacy Network, Ben Ricci’s organization, had been notified of the pending proposals. Not true. Apparently, DDS had sent information to the office of our former attorney, knowing full well that his practice has been suspended. Consequently, Advocacy Network never learned of the proposed changes until we began receiving phone calls from worried parents and guardians who had gotten wind of them through their own Service Coordinators.
Ms. Harmatz gave me the impression that this would be little more than a “streamlining” of the ISP to eliminate redundancies. Is it redundant to require that families and guardians be informed that they have a “right” to meet with the Service Coordinator to have the ISP explained to them within ten days of its receipt? I don’t think so. It is not uncommon for parents and guardians to be overwhelmed by the number of experts at the table during ISP planning, by their acronyms, and their jargon. Many questions arise in the days following. Is it redundant to require that the Service Coordinator inform parents and guardians about their rights to appeal? I don’t think so. Is it redundant to allow family members to participate in an ISP even if they are not the guardian? I don’t think so. Is it redundant to require that an individual’s needs, not the availability of existing services, be the guideline for inclusion in his or her ISP? I don’t think so.
The Board of Advocacy Network stands united with COFAR and the Wrentham Association in opposing changes in ISP regulations which dilute or eliminate the hard-won rights of Ricci Class members.
I agree with you ss. Where is the Arc—the self-proclaimed advocacy organization in MA for the developmentally disabled? Why is there no public comment from them?
Also, if this hearing was supposed to be a public hearing, why was it kept so quiet?
Incidentally, I believe the administration’s eliminating mental retardation from usage will turn out to be not so inconsequential.
with adnetnews and truth. I too have a vision of Mr. Ricci spinning in his grave.
Have we come full circle?