By Gina Macris

Three years after Rhode Island agreed to desegregate its daytime services for adults with developmental disabilities, it does not yet have the staffing or expertise to support community-based work and leisure activities for all who want or need them.

And while the state pushes shared living arrangements in private homes as a less restrictive and less costly alternative to group homes, nearly two thirds of the private direct service providers cannot help with the back-up supports necessary to make that option workable for additional clients.

Overall, the private agencies report that inadequate staffing, training and funding are holding them back, according to a new report on “provider capacity” that the state has submitted to an independent federal court monitor on implementation of the 2014 desegregation agreement.

In a survey of 32 private service providers, the state found that 14 agencies (42 percent) cannot accept new clients seeking supported employment and 11 agencies (34 percent) cannot expand staffing for non-work community services.

These two types of community-based supports form the core of service demands mandated by the 2014 consent decree, which requires Rhode Island to comply with the Americans With Disabilities Act (ADA) by moving away from sheltered workshops and segregated day programs.

In addition, 20 agencies (63 percent) cannot take on new clients who may choose shared living arrangements, 16 agencies (50 percent) can’t accept new residents in group homes, and 15 agencies (47 percent) can’t offer supports to additional clients living more independently in apartments. Finally, 25 agencies, or 78 percent, can’t provide temporary “respite” care to help families or hosts of shared living arrangements who otherwise cannot leave home. Most adults with developmental disabilities live with their families.

The state included all service categories in a survey of “provider capacity” as part of a quarterly report submitted in mid-April to the consent decree monitor, Charles Moseley, even though he focuses only on daytime services.

The data on residential supports helps flesh out the picture of services that appear to be affected by low reimbursement rates and correspondingly low wages for direct care staff. The numbers also are relevant to an upcoming change in Medicaid regulations, separate from the consent decree, but similar in their emphasis on community-based services of all kinds for adults with disabilities.

As a result of the survey on provider capacity, as well as other data suggesting that about 18 percent of young adults have trouble getting appropriate first-time services, the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) said it would refine its data-gathering to better “evaluate how funding is affecting access to services in order to inform possible funding methodology and mechanism changes.”

BHDDH also said it would explore alternatives to “Project Sustainability,” the current set of funding and service regulations put into place by the General Assembly in 2011.

A spokesman for House Majority Leader Nicholas Mattiello defends “Project Sustainability” for bringing accountability to the developmental disability service system.

In 2014, however, the U.S. Department of Justice found that Project Sustainability diminished access to integrated, community-based services in violation of the ADA.

Since that time, Rhode Island also has been preparing for a deadline of March, 2019 to comply with a new Home and Community Based (HCBS) rule promulgated by Medicaid which affects residential services for adults with developmental disabilities. On May 9, however, the Centers for Medicare and Medicaid Services issued a bulletin extending the deadline for three years, until March 17, 2022. A BHDDH spokeswoman could not say on Friday what effect, if any, the extension would have on the implementation in Rhode Island.

The new HCBS rule and the consent decree both get their legal authority from the 1999 Olmstead decision of the U.S. Supreme Court. In Olmstead, the nation’s top court re-affirmed a desegregation mandate in Title II of the ADA, which says that all kinds of services for individuals with disabilities must be provided in the least restrictive environment that is therapeutically appropriate.

In Rhode Island, group homes historically have been the first choice of aging parents who find it difficult to provide 24-hour care at home for sons or daughters with complex needs. But BHDDH has a virtual freeze on new group home admissions, except for dire emergencies.

While adults with developmental disabilities are living at home, their family members might need a few hours or days of respite care, but historically, many have found it difficult to arrange that service.

Among young adults looking for first-time services, those with complex medical needs and those who use sign language have had particular problems making appropriate arrangements, according to the BHDDH quarterly report to Moseley, the monitor.

The monitor’s report also included responses to Moseley’s requests for detailed progress reports for tasks where implementation of the consent decree has fallen short, including information from the Office of Rehabilitation Services (ORS), and the Rhode Island Department of Education (RIDE), as well as BHDDH. All three agencies are involved in implementing the consent decree.

The creation of a career development plan, which takes into account each person’s preferences, strengths, and need for assistance, is a key element in individualizing supports for developmentally disabled clients.

Moseley had set a deadline of June 30, 2017 for all required career development plans to be in place, noting that Rhode Island didn’t have a policy or implementation strategy in place for career development planning until April, 2016,sixteen months after the deadline of Jan 1., 2015.

But BHDDH was able to obtain an extension of the deadline until Sept. 30 for adults with developmental disabilities who have been in sheltered workshops or segregated day programs.

In its report to the monitor on career development planning, BHDDH wrote, “The first efforts emphasized compliance and simplicity in the approach to the plan. The next steps are to improve the quality of these initial plans, ensure that individuals have an active and leading role in their career development planning process, and ensure that actions are stated to meet the stated goals.” Read the report here.

Career development planning “has been a new concept to many people,” BHDDH said.

During the month of May, BHDDH and the Sherlock Center on Disabilities at Rhode Island College are rolling out a series of public presentations on “person-centered planning,” the concept of individuals having greater control over their lives. That idea is at the heart of career development planning and all other types of services for individuals with disabilities. The presentations are also a precursor to an invitation to families and consumers to assist in an upcoming effort to rewrite developmental disability regulations The schedule for the presentations is here.

The state’s quarterly report to the monitor also covered these topics:

School-to-work "transition" activities for students with intellectual or developmental disabilities aged 14 and older, including at least two trial work experiences in the community, each lasting about 60 days.
A RIDE policy emphasizing long-range employment goals for high school special education students.
An ORS policy saying the agency will serve students younger than 16.
Strategies for increasing the average number of hours worked by adults with developmental disabilities.
A plan for increasing staff training at ORS and private provider agencies in various aspects of providing job supports for adults with developmental disabilities.
Strategies for increasing the number of "benefits plans", which are individualized explanations of how - and if -work will affect a client's government assistance, so that job seekers can make well-informed choices about employment.
Plans to further define the role of the Employment First Task Force, a committee representative of various segments of the developmental disabilities community that was created by the consent decree to serve as a bridge between state government and the public.

Moseley’s summary of the state’s various reports is here:

The next round of quarterly reports is due in mid-July. Judge John J. McConnell is scheduled to review the case from the bench in U.S. District Court on July 28.