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.
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.