Federal Judge Orders RI To Re-Invent DD System

By Gina Macris

Judge McConnell

Chief Judge John J. McConnell, Jr. of the U.S. District Court has signaled that if it becomes necessary, he is prepared to order the state of Rhode Island to fund services for adults with developmental disabilities in an amount that complies with a 2014 consent decree that the state agreed to follow.

“I can’t tell you how impressed I am with people who work day in and day out” to support this vulnerable population and “how committed I am that people with developmental disabilities will get the rights guaranteed them under the Constitution,” McConnell said during a July 30 online hearing on the state’s progress in complying with the consent decree.

“I’m prepared to say, ‘Find the money,’ “ McConnell said after hearing from the state Director of Developmental Disabilities, a spokeswoman for providers, and the mother of a 25-year-old man with complex needs who has had no outside supports since the COVID-19 pandemic struck Rhode Island in March.

“Everyone is attempting to follow the requirements” of the consent decree, “but they are stymied by a lack of funds,” McConnell said, summing up the presentations. In addition, they lack funds to deal with the unexpected costs of protecting people during the COVID-19 pandemic, McConnell said.

He said he finds it “frightening” that private service providers, the backbone of the state’s system, are on shaky financial ground. And, McConnell said, “my heart breaks” when he hears of the burdens on families who have a loved one with intellectual or developmental challenges.

A Personal Story

Carol Dorros, M.D. testified about her 25-year-old son, Sidney, who has heart and lung disease, profound deafness, albeit mitigated by a cochlear implant; significant language limitations; a seizure disorder and diabetes. He nevertheless had an active life before the pandemic, volunteering at a soup kitchen, working at a custodial job in a financial services building, and participating in group activities three days a week. He also had a coach who helped him make art for cards sold at a local bookshop and at some craft fairs, his mother said.

Dorros, an internist who has practiced in Rhode Island for 30 years, said she has not been able to work in the last four months. She said she and her husband have been terrified to have Sidney go out in the community or have staff come to the house, because the family doesn’t know what the outsiders’ circles of contact might have been.

Last week, one support person came to the house to work with Sidney for 90 minutes on his art. “We’re looking forward to that person coming back,” she said.

“Really, we are living quite day-to-day.” Dorros said. She has chosen to direct Sidney’s program independent of an agency, but she said it’s “extremely hard to find staff” with the expertise to manage Sidney’s insulin and communication needs. The coronavirus aside, other parents who direct services for their adult children have made similar remarks about the difficulty in finding the appropriate support people. Dorros said she believes the staffing issue comes down to funding.

Referring to state officials who hold the purse strings, McConnell said,” I fear that the right people aren’t on this call.” In the future “we will need someone from the Department of Administration” and any other pertinent executive branch agency, the judge said.

McConnell said he needs to know how much money the developmental disability service system needs to get through the pandemic, and what it will cost to proceed with the goals of the consent decree, which call for individualized services.

“I want the doctor to have confidence in the people providing the service,” the judge said, referring to Dorros, and he said he wants providers to be funded to provide individualized services. Once the funding is figured out, McConnell said, he wants to see the “problem-solvers, not the problem-makers.”

“If we don’t come up with a way to systemically support the providers, then the whole thing will be meaningless,” McConnell said. “If anybody couldn’t tell, I am obsessed with the issue of funding as essential for us to get there,” McConnell said, pointing out that the consent decree requires adequate funding. (No figure is specified.)

Four-Week Deadline

He gave the state until August 30 to lay out the strategy or process for resolving the funding issue and more than a dozen other barriers to compliance with the consent decree, the time line for resolution of each item, and the agency or agencies with primary responsibility for resolving each problem.

The Aug. 30 deadline is but the first of a year-long court-ordered calendar for working out a new system of developmental disability services.

Providers On Shaky Footing

Tina Spears, executive director of the Community Provider Network of Rhode Island (CPNRI), a trade association, said she wanted to emphasize the “unstable nature” of the private agencies that provide services to the adult population with developmental disabilities. Spears represents about two thirds of the three dozen agencies licensed to work with adults with developmental disabilities in Rhode Island.

The day after the court hearing, one of CPNRI’s 23 members, Resources for Human Development, told its clients and their families that it is closing its doors, leaving an estimated 150 persons without services, according to multiple reports. Efforts to reach the director, Rebecca Dimant, were not immediately successful.

The current funding model and administrative rules perpetuate “congregate services and poverty wages for front line workers,” a staffing issue that disproportionately affects women and minorities, Spears said during the July 30 hearing.

COVID-19 has complicated the situation by requiring intensive cleaning protocols, face masks and other personal protective equipment, and social distancing, Spears said. The provider system can’t meet the needs of its consumers with the available resources, she said.

While the incidence of coronavirus in group homes has been low, 11 residents have lost their lives, Spears said. (A spokesman for the Department of Behavioral Healthcare Developmental Disabilities and Hospitals (BHDDH) reports that one of the 11 died of other causes.) Spears said 160 group home residents and 200 staff members have tested positive. About 1180 people with developmental disabilities live in group homes in Rhode Island.

During the past few months, Spears said, providers have been working in close partnership with state officials. Providers have received two months of advance payments during April and May to keep their doors open, as well as a 10 percent temporary rate increase for group home operations and work stabilization funds for front-line employees.

Workers, who make an average of a little more than $13 an hour, temporarily got an additional $3 an hour, Spears said, but it still wasn’t as much as they could get in unemployment benefits.

While the various categories of financial assistance were “very critical and welcome,” Spears said, “they all have stopped and ultimately have not done anything to stabilize the system.”

She said she has been disappointed by a lack of current support from the administration prioritizing developmental disability services for virus infection testing, personal protective equipment and a living wage for workers. In a separate letter to Governor Gina Raimondo dated July 29, Spears has asked for a task force representing the Governor’s office, the court monitor for the consent decree, the state developmental disability service agency, and private service providers to design a “COVID-19 transformation model” over a four-week period.

Spears’ letter also requested

• an increase in reimbursement rates to raise wages to a minimum of $15.00 an hour

• a new funding model that supports individualized services and community inclusion, in compliance the Medicaid Home and Community Based Services Rule (HCBS). (The rule was adopted by Medicaid to follow through on the 1999 Olmstead decision of the U.S. Supreme Court, which reinforces the Integration Mandate of the Americans With Disabilities Act (ADA).

• Priority status for testing and protective equipment for adults with developmental disabilities in congregate care and their staff.

State Agencies Report On Efforts

During the court hearing, Kevin Savage, the acting state Director of Developmental Disabilities, said he agreed that going forward, services must have “different financial supports.” BHDDH has “tremendous value for the providers,” not only CPNRI agencies but the entire community of service providers, Savage said.

BHDDH has sent providers draft rules for reopening and asked for comments from them next week. “The biggest issue is safety for people with developmental disabilities,” he said. “We can’t just re-open programs in a way that we need to shut them down again,” he said, in an apparent allusion to congregate day care centers that were still in operation before the coronavirus reached Rhode Island.

People with developmental disabilities have the same rights, but different needs, he said. Some want to get back to groups, but smaller groups. Some want access from home, Savage said.

Joseph Murphy, a spokesman for the state Office of Rehabilitation Services at the Department of Human Services, told McConnell that the agency has switched to online employment supports when the state closed down in March. “We are open for business, trying to provide services as best we can on a virtual platform” and making sure that bills from providers are paid, he said.

David Sienko of the Rhode Island Department of Education (RIDE) also testified. He said the developmental disability population is part of a larger conversation on re-opening schools. RIDE is responsible for providing transitional services to high school students with developmental disabilities to prepare them to live and work in their communities as adults.

His conversations with special education directors indicate that “pretty much everyone is looking at a hybrid approach” of online and person-to-person instruction, Sienko told the judge. “We know some people need more in-person” teaching, and while that is troubling because of safety considerations, schools still have to address the needs of vulnerable children, Sienko said.

Judge Finalizes Order

The day after the hearing, July 31, McConnell entered an order requiring the state, in collaboration with providers and the community, to address 16 issues identified by the court monitor as fiscal and administrative barriers to compliance with the consent decree.

Antosh, the monitor, said during the hearing that the list of issues reflect “items that have been raised over and over again” for years.

“What we’re looking for is the impetus to get them done,” he said. The list addresses not only the amount of funding for services, but asks for a streamlined application process and addresses a bureaucracy that:

• is designed to link eligibility and funding in a way that translates into the amount of supervision a particular person might need in a congregate setting, as opposed to the individualized services that person needs to accomplish goals.

• limits access to already-approved individual budgets

• Requires documentation of daytime staff time four times in an hour for each client served.

• Forces providers and families to make appeals related to eligibility or funding using an opaque process that does not include a hearing. Even if appeals are successful, the process must be repeated every year.

Read McConnell’s order here. Read the CPNRI letter to Governor Raimondo here.

RI ORS Official Queried About 28 In Olmstead Consent Decree Population Waiting For Services

By Gina Macris

The names of 28 adults with developmental disabilities, ostensibly protected by a 2014 federal consent decree mandating they receive job-related services, are nevertheless on a waiting list for assistance from the Rhode Island Office of Rehabilitation Services. That figure is 5 more than ORS reported as of Feb. 1.

Joseph Murphy                   Photo By Anne Peters 

Joseph Murphy, vocational rehabilitation administrator for ORS, gave an update on the waiting list Feb. 13 when he attended the monthly meeting of the Employment First Task Force, a group created by the consent decree which is representative of individuals with developmental disabilities, their families, and community organizations working with them.

The waiting list had a total of 399 names as of Feb. 7, according to an ORS web page, with most of the affected individuals having a wide variety of significant disabilities.

Of that group, the 28 individuals at the center of the discussion at the task force meeting have developmental disabilities, physical or intellectual challenges that have been present since birth or childhood. These applicants for ORS services are supposed to have legal protection through the Olmstead consent decree against having any waiting period for services – a fact pointed out by Deb Kney, Director of RI Advocates in Action. The consent decree derives its name from the U.S. Supreme Court decision which clarified the integration mandate of the Americans With Disabilities Act. 

Murphy said the consent decree monitor and the Department of Justice undoubtedly are watching the situation closely, as is the judge in the case. Murphy referred to comments made from the bench Nov. 30 by Judge John J. McConnell, Jr. about his concerns that adequate state and federal funding be available to provide the services the consent decree requires. The next court hearing related to the consent decree is April 10.

Murphy said the monitor, Charles Moseley, and DOJ lawyers will visit Rhode Island Feb. 26 through 28th  to assess the latest developments in the implementation of the decree. 

When he notified the monitor of the waiting list, Murphy said, the monitor reacted with dismay. “He said, ‘Oh my,’ “ Murphy told task force members.  Regulations of the federal Rehabilitation Services Administration (RSA) require the states to set up a waiting list for vocational rehabilitation services when they can’t serve all eligible applicants.

In this case, the waiting list was triggered by the state’s unexpected loss of about $3 million in federal aid, which was re-directed to Texas in the wake of Hurricane Harvey.

The regulations require states to prioritize the order in which someone is removed from the list according to the degree of a person’s disability. Rhode Island’s so-called “Order of Selection” policy list has three levels of disability, but ORS is planning to amend the criteria for the highest priority category

Currently, applicants for ORS services in the highest priority category are those with mental or physical impairments that limit their ability to function on the job in at least three of seven different ways cataloged in state policy.  A proposed amendment would reserve the highest priority status for individuals those whose disabilities affect them in a minimum of four ways, according to an ORS spokeswoman. A public hearing on the matter will be March 8.

Murphy said that because of the consent decree, ORS is working with the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals to help protected clients find employment-related support elsewhere. 

The waiting list didn’t go into effect until Dec. 19, nearly three weeks after it was supposed to start, because changes in ORS policy needed formal approval from the federal RSA, Murphy said.

On the first day, there were already 324 names on the list, he said. Counselors “are in shock,”  Murphy said.

Murphy said the waiting list is “particularly awful because we were just starting to make headway” serving the consent decree population.

No one is affected who was already receiving services when ORS imposed the waiting list.

ORS receives $10.4 million from Title 1 of the Elementary and Secondary Education Act.But in the last few years it was able to supplement that basic grant with as much as $3.5 million in so-called “reallotment" funds  collected by the federal RSA from states that don’t meet their vocational rehabilitation obligations and re-distributed elsewhere.  For the federal fiscal year that  began Oct. 1, the re-allocation funding came to just $532,000.

While the reallocation money wasn’t set aside for clients with developmental disabilities, a lot of it went to help this group because that’s where the demand was, Murphy said. He characterized the consent decree as an “unfunded mandate.”

Wait List For Vocational Rehabilitation Services In RI Starts Dec 1; Won't End Any Time Soon

By Gina Macris

There is “no quick fix” to the waiting list that will kick in for Rhode Islanders with the most extensive disabilities who apply for supports from the Office of Rehabilitation Services (ORS) after Dec. 1, according Ronald Racine, head of the state's jemployment rehab services. 

Because of restricted federal funds for rehabilitation services to Rhode Island, the waiting list is expected to grow to 2,620 individuals in a year’s time, although those now receiving services will not be affected.

About ten to 15 percent of future applications are expected to come from individuals with developmental disabilities, based on the current caseload. ORS currently serves 3,621 individuals with very significant, or “first priority” disabilities, including those with intellectual or developmental disabilities.

Racine, Associate Director of the Division of Community Services at the state Department of Human Services, said Nov. 22 that ORS might reduce the time anyone spends on the waiting list by collaborating with other state agencies, like the Department of Labor and Training or the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals. 

Racine spoke at a public hearing at the Warwick Public Library Nov. 21 that he said was a pre-requisite to amending a federally-mandated state plan to formally create the waiting list under provisions of the Workforce Investment and Opportunities Act.

The trigger for the waiting list is a dramatic restriction in so-called federal vocational rehabilitation “reallocation” funds awarded by the Rehabilitation Services Administration (RSA), part of the U.S. Department of Education. In the past several years, these reallocation funds have averaged about $3.6 million, according to ORS officials.

For the federal fiscal year that began Oct. 1, Rhode Island sought $5 million in reallocation funds, but was awarded only $532,000.

While some of those attending the hearing asked what could be done to advocate for the restoration of the funds, Racine explained that this reallocation money is not Rhode Island’s to start with.

Rhode Island still receives a regular grant award under provisions of Title I of the Elementary and Secondary Education Act - $10.4 million for the latest federal fiscal year, which began Oct. 1, according to Racine.

But he explained that the reallocation money comes from states that must return funding to the federal government because they did not put up sufficient state dollars to support vocational rehabilitation. That pool of money is then reallocated by the RSA at its discretion to the other states.

This year, the RSA said it gave Texas all $33 million in reallocation funding it requested because of the impact of Hurricane Harvey. Racine told those attending the public hearing that the reallocation process was completed before Hurricane Maria devastated Puerto Rico, and he anticipated that the island would dominate in the next round of reallocation funding. That would mean a waiting list for vocational rehabilitation services would continue in Rhode Island, Racine said.

He said that ORS has been using reallocation money to support clients who are protected by a 2014 federal consent decree requiring the state to give adults with developmental disabilities greater access to regular jobs in the community.

ORS has notified the U.S. Department of Justice and a federal court monitor of the change in funding, and the resulting waiting list, Racine said at the Nov. 21 hearing. Neither the monitor nor the DOJ has commented in response, he said.

Separately, ORS faces the loss of $300,000 in federal funding earmarked for supported employment services. Supported employment services, like job coaching, also can be provided through the overall $10.4 million federal grant to ORS, according to Joseph Murphy, assistant administrator for supported employment. 

In a telephone interview Nov. 22, Racine elaborated. He said that the loss of federal supported employment funds does not directly impact an ORS pilot program that complements a similar project operated by the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH.)

ORS’ performance-based pilot program involves about 50 clients, with the last ones due to finish their program year in April, according to Murphy, who explained that they did not all begin at the same time.

Racine further explained that some changes may be made to supported employment services as a result of the performance-based program, but these would be programmatic rather than financial.

Exempt from any waiting list are about 520 high school special education students who have not applied for vocational rehabilitation services but who nevertheless are entitled to federally-mandated pre-employment and transition services.

These services include job exploration and internships, training in social and other skills necessary to prepare for the workplace, help with the skills of independent living, and counseling on opportunities for more comprehensive transition programs or post-secondary education, Racine said.

At the hearing, members of the State Rehabilitation Council, among others, expressed their concerns about the impending waiting list.

Willa Truelove, the Council chairperson, and Catherine Sansonetti, who is also a staff attorney at the RI Disability Law Center, both said the waiting list should be made public and that such transparency could help document the need for services.

Racine said the numbers on the waiting list can be put on the ORS Facebook page, but the names will be kept private.

(Click here to read an earlier article on the waiting list that has been corrected and clarified.).

Two Pilot Programs, Two Approaches to Supported Employment, Aired at RI DD Task Force Meeting

By Gina Macris

(This article (been corrected.)

Between January and mid-August, about one in four Rhode Islanders with developmental disabilities who were enrolled in a new supported employment program landed jobs, with help from private service agencies funded through the state Division of Developmental Disabilities (DDD).

But there are signs of strain on the ability of these agencies to train the workers they need to continue to deliver results over the long haul.

 In the meantime, the Office of Rehabilitation Services (ORS) has started a much smaller pilot project , now in its second quarter of operation.

The two pilots take different approaches to funding employment-related supports for adults with developmental disabilities.

The DDD program adopts a fee-for service reimbursement model – based on the severity of a client’s disability - and a complicated billing mechanism that is similar to the one set up six years ago by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) for funding all developmental disability payments to private providers.

There is no provision for funding up front to support agencies’ costs for training workers to provide employment-related services.

The ORS project offers a flat rate of $7,000 per client, with $1750 up front so provider agencies can train and assemble a team of employment specialists. Providers are eligible for two additional quarterly payments of $1750 as long as they document the progress the clients are making.  A final payment  of  $1750 is awarded at the end of a year’s time only if the client has landed a job.

According to a recent report to a federal court monitor, state officials are evaluating both the ORS and DDD approaches to determine “what aspects of each model work for providers, what challenges exist, and how ongoing efforts of the two agencies can be coordinated.”

Tracey Cunningham and Joseph Murphy

Joseph Murphy, an administrator at ORS in the Department of Human Services, and Tracey Cunningham, Chief Employment Specialist in the developmental disabilities division at BHDDH, gave status reports on their respective programs at the monthly meeting of the Employment First Task Force Sept. 12.  

Cunningham said that between January and mid-August, the DDD program found jobs for 116 of a total of 425 adults with developmental disabilities who were enrolled. Nine others found jobs that didn’t work out, Cunningham said, and they are looking for better matches.

The program could take on an additional 92 clients, up to a maximum of 517, according to figures provided by Cunningham. However, service providers are having trouble lining up the trained staff to expand their rosters and want to focus instead on doing a good job with the clients they already have, Cunningham said.

Claire Rosenbaum, Adult Services Coordinator for the Sherlock Center on Disabilities at Rhode Island College, said one training course was cancelled recently for lack of enrollment. The Sherlock Center has a contract with the state to provide the needed training tuition-free.

In addition, the “self-directed” families, those who manage services independently for loved ones, are having a difficult time finding properly trained job developers and job coaches, Rosenbaum said. 

Cunningham said about 90 percent of “self-directed” families who seek supported employment services purchase them from private agencies.  But Rosenbaum said families are having difficulty identifying agencies able to help them.

Cunningham said three agencies are accepting clients from “self-directed” families:  Goodwill Industries, Work, Inc., and a new program called Kaleidoscope.

Nicole Kovite Zeitler

Nicole Kovite Zeitler, a lawyer for the U.S. Department of Justice who monitors supported employment in conjunction with a 2014 consent decree enforcing the Americans With Disabilities Act (ADA), asked what was driving the providers’ inability to expand.

 Low salaries are the primary reason, said Donna Martin, executive director of the Community Provider Network of Rhode Island, a trade association representing about two thirds of the private agencies providing services in Rhode Island.

She said aging baby boomers also are creating an increased demand for direct care workers. Turnover is high – about 35 percent - and one in six jobs goes vacant in the developmental disability system, she said.

The General Assembly this year enacted the second consecutive raise for direct care workers. (Read related article here.)

But the increase, an estimated 42 cents an hour before taxes, is not expected to make a significant difference in the existing subsistence-level wages. Nor will it be any easier for developmental disability agencies to hire or keep new workers.

Meanwhile, the funding for the DDD supported employment program has been greatly under-utilized, even while the developmental disability service agencies have struggled to hire and train enough workers. (Read related article here.)                                 

The DDD program provides increased allowances for  job-seekers, based on the degree to which they lack independence,  but  most of the expenditures are set-aside for one-time performance bonuses to the agencies when:

•  A job coach or job developer completes training
•  A client gets hired
•  A client remains employed for 90 days
•  A client remains employed for 180 days.

Agencies receive $810 for each worker who has completed training. The remainder of the bonuses are arranged on a sliding scale, depending on the severity of the client’s disability, with the largest payments resulting from placement and retention milestones for those with the most complex needs.

Excluding any reimbursements for worker training, which were not part of the original design of the DDD program, the average maximum one-time reimbursement was initially projected to be $9,700 for young adults and $15,757 for older adults – those who left high school before 2013. Any updated figures were not immediately available.

The pilot operated by the state Office of Rehabilitation Services (ORS)  works with seven developmental disability service agencies to help a total of 49 clients find jobs. Five have had success so far, Joseph Murphy, program administrator, told task force members.

The ORS program, which receives technical assistance from Salve Regina University in Newport,  is now in the second quarter of the program year, while DDD program is in the third quarter. 

The ORS program considers a successful placement to be a minimum of ten hours a week in competitive, integrated employment in the community, although Murphy said Sept. 14 that it accepts clients no matter how many hours' work they seek. The ORS program offers a $1,000 bonus for job placements that exceed 20 hours a week and last at least six months. In the DDD program, a successful placement may involve fewer than 10 hours' work a week.

Victoria Thomas

The employment goal of the consent decree is an average of 20 hours a week of work at minimum wage or higher, although DOJ lawyer Victoria Thomas said there are no hourly employment requirements in the ADA.

“It just says people with developmental disabilities should have the option of integrated services,” she said.

The consent decree resulted from findings of the DOJ in 2014 that the state’s developmental disability services  over-relied on segregated sheltered workshops paying sub-minimum wages and non-work programs resembling day care.  As part of a system-wide overhaul, the state must support increasing numbers of adults with developmental disabilities in competitive employment in the community through Jan. 1, 2024.

The Employment First Task Force was created by the consent decree to serve as a bridge between state government and the community.

All photos by Anne Peters

This article has been corrected to reflect the fact that the up-front payment to providers in the ORS supported employment program is $1,750, one quarter of the total $7,000 allocation per client. In a clarification, Joseph Murphy, the program administrator, said it accepts clients no matter how many hours a week they seek competitive employment, even though a placement must be for at least ten hours a week to be considered successful for the purposes of the program.