By Gina Macris
Many young adults with developmental disabilities in Rhode Island are still not receiving services to which they are entitled in a timely manner. Some are not getting services at all.
These conclusions have emerged as the consensus of the Employment First Task Force (EFTF) concerning Rhode Islanders with intellectual and developmental challenges who are trying to get regular jobs and other integrated services promised by a federal consent decree signed nearly four years ago.
The EFTF grew out of a provision of the 2014 federal consent decree which called for a bridge between the public and state government. An independent court monitor on the case has made it clear that he expects the EFTF to provide a reality check from the community as the state tries to desegregate its services for adults with developmental disabilities to comply with the Americans With Disabilities Act.
The Task Force, including developmental disability professionals in the private sector, family members and consumers themselves, summarized its observations and recommendations covering the last half of 2017 in a recent progress report to the court monitor, Charles Moseley.
In 2016, under pressure from Moseley, the U.S. Department of Justice, and U.S. District Court Judge John J. McConnell, Jr., the state cleared a backlog of as many as 250 applications for adult services and developed an “eligibility by 17” policy.
The policy is intended to allow families plenty of time to plan a smooth transition for their sons and daughters to move from high school to the adult world. Most special education students eligible for adult services from the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) stay in school until the age of 21.
Nearly a year after the “eligibility by 17” policy was announced, in July, 2017, EFTF members were still hearing comments relayed by special education professionals that some families of students were notified of their eligibility but weren’t told how much money they would be allocated in time to plan individualized and meaningful services.
In response to follow-up questions from Developmental Disability News, a BHDDH spokeswoman said in an email August 3 that the agency, working with the Rhode Island Department of Education, local school districts and the Rhode Island Parent Information Network, is “able to adhere to (the state’s) ‘eligibility by 17 policy.’ ”
"Logjam Cited In Onset Of Adult Services
But five days later, Claire Rosenbaum, an EFTF member who works as the adult services coordinator at the Sherlock Center on Disabilities at Rhode Island College, said at a public forum that “there seems to be a logjam” when families are trying to figure out how much money the state has awarded them and what it will buy.
At the time, Kerri Zanchi, director of the Division of Developmental Disabilities, (DDD) said her division aimed to give families a one year to plan before their son or daughter leaves left high school and needs needed adult services.
But Rosenbaum said a year is not long enough. Families may explore their options and settle on a particular agency, only to be told it cannot accept a new client with a particular disability or disabilities, she said.
That scenario is not uncommon. A precarious fiscal landscape has prompted many providers of developmental disability services to limit the number of new clients.
Often, families turned down by one or more agencies decide that the only way they can get a customized, high quality program is to organize it themselves and pay individual workers through a designated fiscal agent that handles the budget. Once that decision has been made, the families must begin planning all over again, Rosenbaum said, reiterating her conclusion that a year is not enough.
In December, DDD provided data about "eligibility by 17" that EFTF had requested six months earlier, including:
- The number of applications and the ages of applicants
- The number found eligible and the time span between application and eligibility determination
- The number of newly eligible persons who received an initial needs assessment and the time span between the eligibility determination and the assessment interview
- The number who began receiving adult services and the time span from the completion of the needs assessment
In its report, EFTF said that DDD is “actively charting when and why gaps in the process appear.”
The “gaps in the process” are not defined in the report. But it said Task Force members and state officials agreed to meet regularly to “determine what issues, if any, exist in this process and how to address these issues.”
Data released by BHDDH in quarterly public forums in November and February shed light on some of the requests that had been made by EFTF; the number of applications, the ages of the applicants, and a breakdown on the proportion found eligible.
The “eligibility by 17” policy assumes that 16 and 17-year olds are submitting applications to BHDDH for adult services, but the most recent data indicates that the 16 and 17year-old age group accounted for only 11 percent of applications between August, 2016 and February 10, 2018. The lack of applications from younger students suggests that the “eligibility by 17” policy hasn’t been thoroughly communicated to families. (See chart below.)
At the same time, one table indicates that the proportion of applications from 16 and 17 year-olds has been increasing in the last year.
At the most recent public forum, BHDDH officials also presented information on the proportion of applicants that have been found eligible for services. Of 635 applications received between August, 2016 and Feb. 16, 2018, a total of 595 have been decided, including 264, or 44 percent, that were approved without any additional documentation.
The data indicated that an additional 158, or 27 percent, eventually would be approved once documentation was completed.
Other Issues Raised By Task Force
The Task Force also expressed concerns about other issues. They include:
- A lengthy needs assessment done for each person eligible for services
- The ramifications of a push for more individualized, or “person-centered” services and the planning that goes into them
- An overall approach, dubbed “conflict-free,” in which planning, funding, and service delivery are handled by separate entities so that the best interests of individuals with developmental disabilities are not compromised. Currently, BHDDH handles funding and assessment and approves individual service plans developed by private agencies or independent developmental disability professionals.
Assessing Individual Needs
In November, 2016, the state implemented a revised needs assessment, called the SIS-A (Supports Intensity Scale - A). The SIS-A had been promoted as more accurate than the previous version, and the Task Force concurred.
“Reports seem to indicate better results,” the report said.
At the same time, the Task Force found “ongoing challenges.”
For example, the Task Force said the SIS-A, developed by the American Association on Intellectual and Developmental Disabilities, was “not intended to be a funding mechanism.” That’s the purpose for which it is used in Rhode Island and many other states.
The Task Force recommended that an independent third party be chosen to provide “better interviews” and eliminate conflicts with funding decisions.
Highly detailed interviews with persons eligible for developmental disability services and their families are at the heart of the SIS-A assessment process. Both the assessment and the individual funding decisions are in the hands of BHDDH.
During the interviews, families are very reluctant to speak in great detail about the “deficits and struggles” of the individual at the center of the assessment process, but they don’t understand that this hesitance may result in lower funding for their loved one, the Task Force said.
“Families don’t understand that the first ten minutes of questions which capture exceptional medical and behavioral issues dictate a substantial difference in funding,” the report said.
The Task Force recommended that community organizations, like Advocates In Action, the Cross Disability Coalition, The Rhode Island Public Information Network, and a new parent advocacy group called RI-FORCE, offer training to their constituencies on the interview process of the SIS-A.
A Call for True Conflict–Free Planning
The report tackled the challenges of so-called person-centered planning, in which the needs and preferences of an individual drive short-range and long-range career and life goals, regardless of the immediate limitations of program offerings of a particular agency.
In person-centered planning, these individual needs and preferences also drive budgetary decisions, although it is generally understood that not all the supports needed by a person with developmental disabilities will be provided by paid staff.
“It is our opinion that implementing real, conflict free person-centered planning could have a greater positive effect on people’s lives than the consent decree itself,” the Task Force wrote.
“While there has been some recent movement on the issue,” according to the report, Rhode Island has been out of compliance for four years with Medicaid regulations for conflict-free individualized planning and management of services.
The Task Force said individuals with developmental disabilities, their families, and service providers all have shown resistance to the person-centered planning initiative now underway.
Some consumers and their families “view this as an additional layer of bureaucracy, while others would prefer all their dollars go to services rather than planning. Some family members are concerned that they would not be as involved using this process,” the report said.
Service providers, who are paid for planning individualized client programs, fear that they will not be able to meet the individualized needs of clients, particularly with limited funds, high staff turnover, and limited transportation options, according to the report.
There is a concern that “conflict-free” removes the staff who best know the individual from the planning process, the Task Force said.
It also expressed concern that there are no additional funds to provide conflict-free planning, saying that redistributing existing planning funds that now go to private providers “may destabilize already underfunded services.”
While calling for additional funding for person-centered planning, the Task Force also urged a continuation of a series of workshops on “person-centered” thinking and planning that is offered by the Sherlock Center on Disabilities at Rhode Island College to promote better communication on the topic.
Some of the perceptions about person-centered planning “are based on misunderstandings and the general fear that comes with any change,” according to the report. “Communication on this issue will be extremely important.”
BHDDH is trying to address the issue of funding, both to achieve conflict-free planning and case management and to balance its budget in the next fiscal year.
Governor Gina Raimondo’s budget proposal seeks the General Assembly’s approval to amend the Medicaid State Plan so BHDDH can apply for a Health Home waiver that would provide a 90 percent reimbursement rate for person-centered planning and other specific services for two years.
The earliest such a Health Home might begin operation, on a pilot basis, would be in January, 2019, and that might be optimistic, according to Rebecca Boss, the BHDDH director.
Supported Employment At Issue
The Task Force, meanwhile, expressed concern about the overall effectiveness of a pilot program in supported employment that is intended to focus on the individual.
“Task Force members expressed concerns regarding the ‘person-centeredness’ of the program, the training requirements to participate, communications regarding the program, and overall effectiveness,” the report said.
Existing staff-to-client ratios prohibit individualizing job seekers’ daily and weekly schedules, according to the Task Force, although that comment did not refer specifically to the pilot program. DDD also offers job-related services outside the demonstration program.
The Task Force recommended some of its members meet with state officials regularly to review data and develop strategies to ensure the success of the Person-Centered Supported Employment Performance Program.