By Gina Macris
U.S. District Court Judge John J. McConnell, Jr. says Rhode Island has made considerable progress in laying the groundwork to comply with a three year-old consent decree aimed at improving the lives of adults with developmental disabilities.
But that progress should not distract all concerned from “how far we have to go,” McConnell said.
In a quarterly review of the case on March 10, McConnell called attention to the remarks of the U.S. Department of Justice (DOJ), Nicole Kovite Zeitler, who spoke of the state’s progress and the unrealized potential of the consent decree to transform lives for a generation.
“From where we were a year ago the work the state has done is commendable,” Zeitler said, “but the ultimate goal of the 2014 agreement is the transformation of services” for adults with developmental disabilities.
“These people have goals, just like anyone else,” Zeitler said.
Yet, a recent review of the day services typically offered adults with disabilities conveys a lack of purpose. “There’s a feeling that attending a day program is just something people do,” she said.
The DOJ is committed to ultimate compliance with the consent decree, Zeitler said, but the decree means more than financing plans for services.
Rather, the effort must put individuals’ goals and dreams at the center of the process and incorporate ongoing quality assurance practices to ensure continued compliance with the consent decree, she said.
Zeitler referred to a review of the day services of 21 adults by consultant William H. Ashe that was incorporated into a recent report to the court by the independent monitor in the case, Charles Moseley.
In many cases, Ashe found the signposts of individualized or “person-centered’” planning absent. The service planning process required by the state ”feels rigid and automatic,” Ashe noted. ”The ISP (individual service plan) for a person this year may often look remarkably similar to the one that was done last year. The funding that agencies receive is based on assessed ‘functioning level’ and not based upon what people may want or actually need,” Ashe said.
”Agencies are often in a situation where their staffing levels prohibit them from individualizing supports to the extent that is necessary to really implement services that are based upon real choice,” he said.
The monitor, Moseley, has given the state notice in a recent report to the court that he wants changes in the funding and planning process that meet the “person-centered” requirements of the consent decree. The state must give him progress reports quarterly, beginning April 1.
McConnell asked why the percentage of young adults finding employment was so low – only 22 percent. Moseley said the percentage dipped as the state complied with a request he made last fall to fully identify all eligible individuals who have left school since 2013.
The count of the so-called “youth exit” group initially stood at 151 young adults with developmental disabilities. By November the figure had jumped to 501, and, now is 516, Mary Madden, the state’s consent decree coordinator, told the court.
The number of young adults with jobs is 109, according to the latest reports of the state to the monitor.
Referring to a provision of the consent decree decree which requires “all” young people to have jobs the same year they leave school, McConnell asked why the employmentbenchmark for young adults is so “aggressive”.
Zeitler said the goals were designed that way because the generation going through school now is learning the skills necessary to prepare for adult life.
These young people have the most to gain from the consent decree and the most to lose without it, Zeitler said. They know their own potential, but under the old system they would spend years in isolation from the larger community, she said.
The 2014 consent decree settled findings of the DOJ that the state relied on sheltered workshops and segregated day programs in violation of Title II of the Americans With Disabilities Act, which was reaffirmed in the Olmstead decision of the U.S. Supreme Court in 1999. The Olmstead decision said that individuals with disabilities have a right to receive services in the least restrictive environment that is therapeutically appropriate, which is presumed to be the community.
The Rhode Island decree is not the first Olmstead enforcement action in the country, but the first one that addresses daytime programs that segregate adults with disabilities. Because they ard the DOJ.
A year ago, the state had made virtually no effort to implement the consent decree and lacked the financing, data, and staff to respond to requests made by the monitor. After an evidentiary hearing in April, McConnell issued a multi-faceted order which put the state on short deadlines for responding to discrete tasks – or face contempt proceedings.
So far, the order has brought results: $11 million more in federal-state Medicaid funding, a larger staff to work on policy changes, and better cooperation and communication among the agencies responsible for implementing the agreement – the Department of Behavioral Healthcare, Developmental Disabilities, the Office of Rehabilitation Services, and the Rhode Island Department of Education.
One part of McConnell’s order has led to an incentive program for service providers to find jobs for their clients and help them stay employed. That program has placed 20 new hires since January, although Zeitler said the state needs to have “frank discussions” with service providers about continued gaps in job placement targets in two of three segmentsof the population represented by the consent decree.
Moseley, the monitor, has followed McConnell’s lead in adopting short-term deadlines for specific tasks he has assigned the state. One such inquiry led to the identification in November of young adults with autism or multiple disabilities who hadn’t previously been counted as part of the consent decree population. That’s what boosted the so-called “youth exit” population to more than 500.
More recently, Moseley has enumerated dozens of tasks relating to the individualization of services, better internal quality improvement efforts, methods of funding, employment, and other consent-decree issues, along with short-term deadlines for responses.
Jennifer Wood, General Counsel to the Secretary of Health and Human Services, the head of the state’s response to the consent decree, said Rhode Island now has the bureaucratic “infrastructure” to delve into the actual service delivery system. “Person-centered planning is at the heart of that,” she said.
The next court review will be scheduled for mid-July, but McConnell said he wants to receive interim progress reports from Moseley. McConnell also noted that from time to time, he receives letters from parents and makes them part of the case file, which is a public record.