RI DD Director Invites Families to Help Overhaul Design of Services With Individual Needs in Mind

Photos by Anne Peters

Kerri Zanchi, center, Director of the RI Division of Developmental Disabilities, is flanked by administrators Heather Mincey, left, and Anne LeClerc, right, as she addresses the audience at a public forum in Newport May 2. 

By Gina Macris

Beginning May 10, Rhode Island’s Division of Developmental Disabilities plans to involve the adults it serves, their families, service providers and advocates in a step-by-step process to overhaul the way it does business .

Kerri Zanchi, the new director of the division, told Aquidneck Island residents who attended a public forum May 2 at the Community College of Rhode Island that the initial discussions will inform an effort to re-write the regulations governing developmental disability services to put the needs and wants of its clients front and center. 

The changes have two drivers:

• A 2014 consent decree requiring the state to correct violations of the Americans With Disabilities Act by providing employment supports and access to non-work supports in the community.

• A compliance deadline of March, 2019 for implementation of a Medicaid rule on Home and Community Based Services (HCBS), which requires an individualized approach to care, treating individuals with disabilities as full-fledged members of their communities.  

Both the consent decree and the HCBS rule draw their authority from the 1999 Olmstead decision of the U.S. Supreme Court, which amounted to a desegregation order affecting all services for all individuals with disabilities.

 Zanchi used the term “person-centered” to sum up the kind of planning and practices that go into the new inclusive approach.  A. Anthony Antosh, director of the Sherlock Center on Disabilities at Rhode Island College, elaborated.

A. Anthony Antosh

“The way the system has worked forever is that someone else controls what people get. We want people with disabilities to get more control of their own lives,” he said. “Resources support part of their lives but not all of their lives,” he said.

He said that in several states, including Texas, Kentucky and North Carolina, faith-based support networks in various communities have resulted in a “dramatically broader network” of personal relationships for individuals with disabilities. “And 80 percent of them have jobs,” Antosh said.

To flesh out the concepts of individualization and integration and how they might work in Rhode Island,  Antosh and Zanchi will co-host a series of discussions to explore the idea and solicit comments throughout the month of May.

The first two sessions will be held in the morning and evening of Wednesday, May 10 at the Sherlock Center. (Details at end of article.)

 “It’s a lot of change. It’s a pivotal time,” Zanchi said. But “if you don’t have a strong person-centered practice, it’s really hard to move the system forward and comply with the consent decree and HCBS.”

Zanchi said she and her staff will pull together comments from all the public sessions and present the results to the public in the early summer, setting the stage for regulatory reform.

Howard Cohen

Howard Cohen, whose adult son has developmental disabilities, took a dim view of the current regulations.  While the goal was to “even up the playing field among the agencies” by establishing uniform rates of reimbursement, he said, the regulations resulted in “a lot of resources toward book keeping rather than managing care.” 

And “the last time, the regulations got ramrodded through,” Cohen said, an allusion to the regulatory changes adopted by the General Assembly in 2011 as part of “Project Sustainability.”

Kevin Savage, director of licensing for developmental disability services, said all those with a stake in the regulations – including families – will be invited to participate in writing new ones.

The new regulations will not be aimed at “correcting past mistakes” but will try to conform to the law reflected in the consent decree and in HCBS, he said. The process also is expected to result in 20 percent fewer regulations than there are now, Savage said.

Zanchi emphasized that compliance with HCBS will mean a change in case management, or the formal approval process for allocating resources to each person’s program of services.

Currently social workers, who have an average caseload of 205 clients per person, share the case management responsibilities with provider agencies, she said. But HCBS sees an inherent conflict of interest in providers making decisions about the services they themselves furnish, to the possible detriment of the individualized goals of the client.

Zanchi said some states use third-party case management and others have state employees do the job, with a “firewall” between them and the fiscal arm of state government.  In Rhode Island, changes in case management won’t come until 2018, she said.

She also told family members that the state would explore expanding the options for residential care, an issue of particular concern to older parents in light of a virtual freeze on group home admissions. HCBS expects states will move away from group home residential care.

After the meeting, Zanchi was asked how changes in practice brought about by the new regulations would be funded.

“When we figure out what it (the service system) would look like, then we need to figure out the funding for it,” she said.

During the forum, Dottie Darcy, the mother of an adult with developmental disabilities, wondered aloud how officials would “develop a system, without money, to account for the needs of all the people. At some point funding has to be addressed,” she said.

“I think it’s outrageous” that service providers “can’t keep workers” because they can’t pay enough, Darcy said.

She lamented a lack of organized advocacy with members of the General Assembly on behalf of individuals with developmental disabilities.

Claire Rosenbaum, a member of the Rhode Island Developmental Disabilities Council, said it is in the process of trying to revive its family organization to do exactly the kind of work Darcy described, “but it’s not there yet.”

The first two sessions on “Person-Centered Thinking and Planning” will be Wednesday, May 10, from 10 a.m. to noon and from 6 p.m. to 8 p.m., at the Sherlock Center on Disabilities on the campus of Rhode Island College, 600 Mount Pleasant Ave., Providence. These meetings will be of particular interest to families who direct their own programs of services for family members, but all sessions in the series are open to the public.

Those wishing to attend should RSVP with Claire Rosenbaum by May 8 at 401-456-4732 or crosenbaum@ric.edu