By Gina Macris
Andrew Whalen, a 31 year-old Rhode Islander on the autism spectrum, applied for support services in the wake of his mother’s death in January. He’s still waiting to hear whether he is eligible.
When a psychologist interviewed him Nov. 16, she said the state’s Division of Developmental Disabilities was backed up addressing cases involved in a federal consent decree and that his application was “not an emergency,” Whalen said.
Last week, one of his sisters took him to the Department of Human Services (DHS) to check on the separate application he filed two months ago for food stamps. He said he learned that the state’s new $364 million computer system had deleted his records and the only way he could remedy the problem was to file for benefits all over again.
Whalen represents adults with developmental disabilities on the Employment First Task Force, created by a 2014 federal consent decree as a bridge between the state and the community as Rhode Island moves to comply with the Americans with Disabilities Act.
Under terms of the consent decree, Rhode Island must move away from segregated sheltered workshops and day programs toward supported employment in the community and integrated non-work activities over a ten-year period.
Whalen explained his plight Tuesday, Dec. 13, to his colleagues on the task force at a meeting in Warwick, and to the federal court monitor in the consent decree case, who was listening via conference call.
The monitor, Charles Moseley, wanted to know how many applicants for adult developmental disability services might be affected by the computerized Unified Health Infrastructure Project. UHIP, as it is known, is supposed to process all the state’s social service benefits, including the Medicaid money used for developmental disability services.
Sue Donovan of the Rhode Island Parent Information Network (RIPIN) ventured an estimate – about 100 – but asked Moseley to confirm figures with the state.
RIPIN works with families of high school students with developmental disabilities who are making the transition to adult services. Donovan said she knows of one person who was authorized by BHDDH to start receiving developmental disability supports September 1, but the Medicaid funding didn’t actually didn’t actually clear UHIP until Monday, Dec. 12.
Donovan said there are 23 young adults who have been deemed eligible for developmental disability services who are waiting for their funding to come through.
In addition, about 83 young people are expected to be found eligible and are “heading for the same problem,” she said.
“I’m sure the Division (of Developmental Disabilities) has a better idea of those numbers,” Donovan said.
“I will look into that,” Moseley said.
“It’s a shame. It’s a disgrace,” Donovan said of the situation.
State Says It Is Monitoring Flow of DD Benefits
On Wednesday, Dec.14, a spokeswoman for Jennifer Wood, Deputy Secretary of Health and Human Services, said that “we are individually monitoring the services received by every DD (developmental disabilities) client who has been determined eligible for Medicaid services to ensure that their Medicaid coverage is working correctly." She did not offer any figures on those who might be affected by the UHIP problems.
“BHDDH social workers are also always available to their clients if they are experiencing any issues with any of the benefits they are receiving,” the spokeswoman said.
Developmental disability officials have publicly acknowledged in recent months that even without a crisis like UHIP, social workers have a hard time keeping up with the needs of clients in their care. The average caseload for each social worker is 205, according to Jane Gallivan, a developmental disabilities consultant to the state.
Rhode Island has been under a federal court order to see to it that individuals with developmental disabilities receive eligibility decisions and begin services in a timely manner after they complete high school.
In response to the order, the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has said that at the end of September, it cleared a backlog of applications that earlier in the year had numbered about 250.
BHSSH also established strict timelines for responding to applicants going forward, determining within 30 days whether they were eligible, needed to submit additional written information, or needed to schedule an interview.
Whalen’s experience – he waited 10 months to be interviewed by the psychologist – raises new questions about how strictly BHDDH is following its new eligibility timelines, not only for high school students moving to adult services, but for applicants of all ages and circumstances.
If BHDDH isn’t meeting its timelines because of UHIP, Donovan said, maybe the judge in the consent decree case, John J. McConnell, Jr. of U.S. District Court, can do something to “help move the state to get this DHS system corrected.”
Wood’s spokeswoman declined to address Whalen’s situation publicly, citing confidentiality laws. She insisted that BHDDH is working within court-approved time frames to determine eligibility.
The American Civil Liberties Union has filed its own class action lawsuit against the state in U.S. District Court in the last week over the UHIP troubles with a focus on the food stamp program, saying the denial of benefits puts thousands of households “at imminent risk of going hungry as a result of being denied needed assistance to help them feed their families.”
Ray Bandusky, executive director of the Rhode Island Disability Law Center, told task force members Tuesday that Anne Mulready, one of the center’s managing attorneys, and Linda Katz of the Economic Progress Institute, have met with Governor Gina Raimondo to emphasize the effect the computer problems are having on poor and disabled people.
One of the main points Mulready made, according to Bandusky, was that “the kind of people who need assistance are not going to go online” to fill out a form.
Last week, Raimondo acknowledged that it was a mistake for the human services department to lay off 15 workers and transfer another 30 to the Department of Children, Youth and Families (DCYF) just before it rolled out the new online application process. She has ordered the agency to hire 35 temporary workers to address thousands of applications that are in limbo.
At the task force meeting, Claire Rosenbaum of the Sherlock Center on Disabilities at Rhode Island College said that some of the workers who got “bumped” to DCYF had many years’ experience in resolving the very problems that DHS now faces. That expertise is gone, she said.
Deb Kney, director of Advocates in Action, said that in Whalen’s case, “It took him a couple of months just to be told he had to start over” in the food stamp application process. Advocates in Action employs Whalen to help empower others with developmental disabilities to become advocates for themselves.
A parent on the task force, Mary Beth Cournoyer, said she knows a mother whose son has been found eligible for developmental disability services but who has been “sitting at home for a year” because his family cannot find providers.
After Whelan recounted his problems, Kiernan O’Donnell of the Fogarty Center, a service provider, remarked that “a lot of people focus on transition (to adult services) but people in their twenties, thirties and forties are being marginalized.”
At the same time, he said, providers are still hearing stories of social workers telling clients of retirement age- in one case an 85 year-old man – that they must seek employment to continue to receive developmental disability services.
O'Donnell said the state's resources would be better spent helping the many individuals who want to find jobs.
The state’s consent decree coordinator, Mary Madden, has said publicly that no one will force individuals to work.
Concerns Expressed About Supported Employment Incentives
To satisfy the federal court, BHDDH is planning to roll out a supported employment incentive program in the new year, with a provider fair January 6 that is intended to help individuals seeking employment connect with support services.
The incentive program is funded by $6.8 million for the current fiscal year, but none of it has been spent.
McConnell, the consent decree judge, had ordered the state to implement a supported employment incentive program by Aug. 1.
Twenty three agencies have applied to provide supported employment services eligible for the incentives, according to Donna Martin, executive director of the Community Provider Network of Rhode Island.
Martin, O’Donnell, and Kim Einloth of Perspectives, another provider, all expressed major concerns about a Catch-22 in the incentive program.
Einloth said private service providers don’t have the resources to hire new staff and train them to provide supported employment services, but the state’s incentives are bonuses that would not kick in until certain incremental goals were met.
For example, Einloth said, the one-time bonus for training a supported employment specialist, $810, does not cover the cost of the training.
The program is “not sustainable,” she said.
Einloth questioned whether the providers who attend the fair in January will be ready to present themselves to new clients.
O’Donnell said, “I wonder if they are satisfied with commitment to people they already have,”
Martin replied, “You are spot-on with that, Kie.”
O’Donnell and Einloth, members of the task force, also are co-presidents of the Rhode Island Chapter of the Association of People Supporting Employment First (RIAPSE), which promotes “real jobs at real wages” for individuals with disabilities.
Rosenbaum, of the Sherlock Center, offered the perspective of so-called self-directed families, who organize individualized support services for only one person.
While an agency might get $810 after it trains a job developer on the assumption the developer works with ten clients, the family would only get $81, she said.
Because agencies routinely turn away new clients, self-direction has become the only option for many families who otherwise might not choose that route.
Rosenbaum said the advisory sent by BHDDH to providers about applying for the incentive program did not reach all self-directed families, and those who did receive it found it so technical that they couldn’t understand it and set it aside.
Einloth said the self-directed families are not alone. Even for professionals in the field, “it’s been a rocky road trying to understand the plan, because it’s changed so many times.”
The state had a proposed contract for provider agencies, but the contract was “pulled” last week, Einloth said. Nevertheless, a training session for providers on how to submit bills for the reimbursement program will move forward next week, she said.
BHDDH has indicated some money could be available to defray start-up costs, but has never defined that amount, Einloth said.
Martin said she was disheartened that the $6.8 million allocated by the General Assembly for supported employment remains out of the reach of providers who could deliver results.
Moseley asked Martin to follow up in a separate conversation.
Over the phone, he said he saw “a lot of work” ahead.
Wood’s spokeswoman said Wednesday that it is important to note that the monitor and U.S. Department of Justice approved the supported employment incentive program. .
“We are committed to maintaining an open dialogue and partnership with the provider community moving forward,” said the spokeswoman, Sophie O’Connell.
“As always, we encourage providers and others to share concerns and feedback directly with us so we can work together to address them,” O’Connell said.
(This article has been updated to reflect the fact that the supported employment incentive program passed the review of the court monitor and the DOJ.)