By Gina Macris
What are the top concerns for Rhode Island families who support one of their own in dealing with the challenges of developmental disabilities? How do family members think they can have an impact on the next session of the General Assembly?
Those are the overarching questions that will occupy twin “Coffee and Cafe Conversation“ events in Providence and Newport on Wednesday, Nov. 1, to launch Rhode Island FORCE (Families Organized for Change, Reform and Empowerment.)
The fledgling organization aims to fill a void in grass roots advocacy during the last several years, when the legislature slashed Medicaid funding for developmental disability services, amid assurances from the executive branch that private agencies could provide the same service for less money. The U.S. Department of Justice subsequently found the state’s over reliance on sheltered workshops violated the Americans With Disabilities Act.
The U.S. District Court now oversees reform efforts of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, which has had a complete turnover in management. However, there is still no broad-based family voice in the public policy discussion surrounding changes to the service system – and how to pay for these reforms.
The work of the court and of reform-minded professionals in the field of developmental disabilities cannot replace family advocacy efforts, said Ken Renaud, a consultant who will facilitate the discussions at “Coffee and Cafe Conversation,” in the morning in Providence and the late afternoon in Newport.
“We can’t expect other people to do this,” he said. Renaud himself has a family member with developmental disabilities.
The conversation about strategic priorities began several months ago with a small leadership group of parents and other family members who now want to reach out to others to build consensus, Renaud said.
While the group has start-up support from the Rhode Island Developmental Disabilities Council, the advance publicity for “Coffee and Cafe Conversation” stresses the independence of Rhode Island FORCE from any state agency or community organization.
Renaud said that he will ask those who attend to relay their experiences with the developmental disability system and a series of other questions that will build up to a vote on the top three issues they wish to tackle through advocacy. The sessions will be recorded to provide the leadership group with documentation for follow-up activities, he said.
Renaud emphasized that the sessions are “not for providers” of developmental disability services.
“A lot of people who might have a family member also work in a professional capacity” in the field, he said. “When they walk in the room, we want them to have their ‘family member’ hat on,” he said.
On November 1, Coffee and Cafe Conversation will be from 10 a.m. to noon at the Roger Williams Park Casino, 1000 Elmwood Avenue, Providence, and from 5:30 to 7:30 at the Newport Public Library, 300 Spring St., Newport. For more information, contact Kevin Nerney at the Rhode Island Developmental Disabilities Council, firstname.lastname@example.org or at 401-737-1238.
Each state has a developmental disabilities council, empowered by the Developmentally Disabled and Bill of Rights Act enacted by Congress in 1975 to help individuals live inclusive lives. The councils' mandate is broader than family advocacy. Rhode Island’s 24 council members are appointed by the Governor.