Donna Martin, Executive Director of the Community Network of Rhode island, left; and Kevin Nerney, Chairman of the Employment First Task Force, right. 

By Gina Macris

Despite positive signals about more state funding for developmental disability services in Rhode Island, members of the Employment First Task Force acknowledged May 10 that in general, families remain angry and upset with officials of the state’s primary service agency, the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Task Force members who keep tabs on developmental disability issues on the General Assembly’s legislative agenda said that Governor Gina Raimondo’s plan for increased funding appears to be safe as the legislature approaches the final three or four weeks of its session.

Donna Martin, executive director of the Community Provider Network of Rhode Island (CPNRI), said she heard recently that more legislators  grasp the idea that “the consent decree is something they need to pay attention to,” even if they don’t understand all the details.

“That’s good to hear,“ said Charles Moseley, assigned to monitor the state’s implementation of a 2014 consent decree between the state and the U.S. Department of Justice. In the consent decree, the state agreed to reorganize daytime services for the developmental disabled to focus on community-based jobs and other activities to comply with the integration mandate of Title II of the Americans With Disabilities Act. (ADA)

U.S. District Court Judge John J. McConnell, Jr. has promised “swift and dramatic” action if the General Assembly does not provide sufficient funding to meet the immediate requirements of the decree.

At Tuesday’s task force meeting, informal updates on other disability-related topics suggested that, in general, families apparently are not yet realizing benefits of the consent decree, now at the start of the third year of its ten-year span.

There is widespread dissatisfaction among families about issues that reflect chronic underfunding, complicated by a lack of communication or miscommunication from the state, according to the tenor of comments shared at the meeting.

Kevin Nerney, chairman of the task force, expressed concern about individuals with developmental disabilities who had difficulty finding suitable services and had received letters from BHDDH saying they had been cut from the rolls because they hadn’t used their allocations.

Some of the concerns go back more than two years. Claire Rosenbaum, Adult Services Coordinator at the Sherlock Center on Disabilities, (right) said she understood from informal conversations with BHDDH officials that about 400 individuals had received such letters as of February, 2014.  In the fall of 2015, when the topic was revisited by the Rhode Island Developmental Disabilities Council, a BHDDH official said another 50 individuals had been sent similar letters.

Rosenbaum said after Tuesday’s meeting that she understood BHDDH social workers tried to reconnect with individuals who they knew had been looking unsuccessfully for services.  The task force did not have more recent information on how many of those removed from the BHDDH client roster may have been reinstated.

Efforts to get additional information from BHDDH were unsuccessful Wednesday.

About two dozen private agencies providing most of the supports in Rhode Island to individuals with intellectual or developmental disabilities are operating at a loss and routinely tell prospective clients their programs are full.

Rosenbaum also said young adults eligible for BHDDH services are continuing to leave school and sit at home for months at a time because suitable adult programs are unavailable.

Although a spokeswoman for the state has said eligibility for adult services begins at age 18, Rosenbaum reiterated that, in actuality, BHDDH does not determine eligibility until about four to five months before applicants leave school or turn 21, leaving insufficient time to arrange services.  

In many cases, school departments provide services for intellectually and physically disabled students until they turn 21. Even so, under provisions of Rhode Island law, students with intellectual disabilities are eligible for adult services at the age of 18. Until students leave high school,  the consent decree envisions adult services as supplementary, such as facilitating and supporting vocational assessments and employment experiences, or actual part-time or summer job placements.

In addition, the adult service system would pay for the time of social workers and other professionals to help students and their families formulate individualized adult programs and find service providers.

 (BHDDH is in the process of negotiating a contract with the Rhode Island Parent Information Network to provide support to some young adults and their families who are grappling with transition issues, according to RIPIN’s representative on the Task Force, Sue Donovan.)

Rosenbaum, meanwhile, has filed a statement with U.S. District Court describing the problem, which figured in testimony in an April 8 evidentiary hearing before Judge McConnell. McConnell is poised to consider a request for corrective action to implement the consent decree. The request has not yet been filed.

While BHDDH officials insist there have been improvements in an interview procedure connected with periodic reviews of individual funding levels, Mary Beth Cournoyer, (below), a parent representative on the Task Force, said those assertions are not borne out by an informal survey she did of parents and others familiar with the process.

Cournoyer said that she knows interviewers have been told “not to badger parents” by challenging the answers they give about their son’s or daughter’s needs.

Nevertheless, the interviewers continue to do so, said Cournoyer,

She said she has heard enough to recognize a pattern of argumentative interviews followed by reduced funding levels.

Others have complained about the so-called Supports Intensity Scale (SIS) interview and the associated funding decisions,  most recently at a “town hall” meeting April 27. There, the mere mention of the “SIS” by a BHDDH official triggered a round of laughter in an audience of about 100 people, mostly family members.

On that day, Charles Williams, director of the BHDDH Division of Disabilities, told parents to file an appeal if they disagree with the SIS results. Almost all, if not all, appeals are granted, he said.  

The SIS interview, based on a set of standard multiple choice questions, was designed by the American Association of Intellectual and Developmental Disabilities to gauge the supports or services needed to help an individual achieve his or her goals.

It does not take into account the risk of removing those supports.

The DOJ has found that that BHDDH has used the SIS to determine funding levels, and the consent decree prohibits the continuation of that practice.

The Employment First Task Force, required by a provision of the consent decree, is a group representing community agencies, individuals with disabilities and their families. Among other things, it was intended to serve as a bridge between state government and the public.

But public reaction to the consent decree, most prominently the backlash at the recent “town hall” meeting, has led Nerney, its chairman, to question the role of the task force as a filter for communications from the state.  

He said there hasn’t been an open line of communication with the state in the past, and he told the DOJ that “I don’t think this group should be a funnel.” Expanding on this point, Nerney said the real need is for “actual participation” in the plans that emerge from the state to comply with the consent decree.

“When BHDDH develops a plan, they should have stakeholders at the table,” he said. The more participants at the table, the more stakeholders there will be in the outcome, he said.

Others agreed. “Everybody wins when we strategize and work together,” said Kim Einloth, senior director at Perspectives Corporation, a private service provider.

Tom Kane, CEO of Access Point RI, another service provider, said he would like to have a plan “shared with everybody and shaped by everybody.”

 “We would like to have the ability to anticipate so we can pass information along as well. I, for one, am tired of being reactive,” he said.