Families Struggle While Federal Judge Awaits Progress Report On RI DD System Reform

By Gina Macris

Tonya LeCour, a teacher who is scheduled to return to work Sept. 1, also serves as the sole caregiver for a family member with developmental disabilities.

What will happen to her job if she can’t find daytime supports for the person who depends on her?

LeCour was among several participants who sounded similar concerns at a virtual forum hosted online by the Rhode Island Division of Developmental Disabilities Aug. 17, with technical assistance from the Rhode Island Parent Information Network.

The comments reprised the July 30 testimony of Carol Dorros, M.D., who told Chief Judge John J. McConnell, Jr. of the U.S. District Court of her experience caring for her adult son with developmental disabilities fulltime, and her inability to practice medicine, since the COVID-19 pandemic hit Rhode Island in March.

Those familiar with the developmental disabilities community say they believe there are hundreds of people facing wrenching stituations similar to those described by Dorros and LeCour.

Rhode Island is now days away from a court-imposed deadline of August 30 – the first of six such target dates – to outline its strategies for shoring up the developmental disabilities system in the short term and ensuring it complies in the long run with a 2014 consent decree seeking to enforce the Americans With Disabilities Act.

The court’s review comes against the background of strained state finances.

The state budget office has sent a memo to all department heads, including A. Kathryn Power, director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to submit budget proposals for the next fiscal year that cut overall spending by 15 percent.

In a statement, a spokesman said “BHDDH, like all state departments, is working with its financial team and program managers to assess all options in meeting the 15 percent reduction in FY 22 spending, per the OMB (Office of Management and Budget) guidance.”

At the same time, the state Division of Developmental Disabilities has convened several “workgroups” to tackle the issues, and, according to McConnell’s order, is expected to submit a report Aug. 30 that will “describe the process or strategy” for addressing the problems, the timeline for resolving them, and the particular agency or agencies responsible for each item. ( Update: The report was submitted to an independent court monitor, A. Anthony Antosh, who said it was under his review the week of Sept. 6 and would be submitted to the court when the review is finished.)

The developmental disabilities issues are complex. They include include reimbursement rates keyed to staffing ratios that were designed for congregate care and do not translate well to community activities.

For example, the reimbursement structure may require a support person to take along five people with the same budget authorization on a community activity, whether or not their needs or interests fit into the purpose of the outing. Conversely, staffers may have to jump through hoops to come up with an activity that will appeal to all members of the group.

People receiving services may opt for one-on-one assistance, but that decreases the number of service hours during the week. A typical funding authorization for one person translates into about six hours a week of one-on-one help, according to calculations of the Community Provider Network of Rhode Island, a trade association.

In re-shaping the system, the state has at its disposal a recently-completed 134-page report from the New England States Consortium Systems Organization (NESCSO), which was hired more than 18 months ago at a cost of $1.1 million to conduct a comprehensive study that grew out of increasing demand for a review of rates paid to private providers of developmental disability services.

At the request of BHDDH, NESCSO’s consultants did not make specific recommendations but conducted an exhaustive assessment of the current y situation and presented options for change that the state might consider.

NESCSO described the financial position of the three dozen agencies providing services as “tenuous,” re-affirming interim findings made before the pandemic hit.

The report suggested that an increase in long-term employment among adults with developmental disabilities could save the state millions of dollars in the long run that would otherwise be spent on daytime supports.

However, increasing employment, a goal of the consent decree, would require an up-front investment in employment-related supports and retaining the staff necessary to carry them out.

NESCSO estimates that a 33 percent increase in wages, now an average of $13.18 for front line workers, will result in a 50 percent reduction in turnover, which ranges up to 58 percent in some agencies.

BHDDH has not made any public comment on the report.

In the meantime, service providers seem to be keeping a lid on the pandemic in group homes but are struggling to provide scaled-up daytime supports that meet safety guidelines under the current funding structure.

As of Aug. 25, a total of 164 group home residents had tested positive since the start of the COVID-19 pandemic, three more than reported July 21. Of that total, 48 have been hospitalized and 10 have died, according to a BHDDH spokesman. The numbers indicate that the five people who were hospitalized in late July have all been discharged. The most recent death was reported in June.

During the Aug. 17 public hearing, Kevin Savage, director of the Division of Developmental Disabilities, said, “we don’t want to just go back to doing things the old way.”

He offered to speak privately after the meeting with several individuals, including LeCour, the teacher, and a woman whose sister was in a group home and having problems eating as a result of the social isolation brought on by the pandemic.

Linda Ward, executive director of Opportunities Unlimited, chimed in with the providers’ perspective:

“It’s not about re-opening (daytime services) but meeting a person’s needs one person at a time,” she said. Funding limitations may dictate that individuals get one day a week of services, she said.

And there’s no “community” to access except for a socially distanced one, Ward said. Moreover,

staff are concerned about exposing themselves and their families to the virus, she said.

“I know that’s not helpful to families desperate for supports but we have to do it one at a time,” Ward said.

Meanwhile, the state’s finances, battered by the COVID-19 pandemic, remain in flux. Much could change before the budget is finalized for the 2022 fiscal year, which begins next July 1. The state budget director, Jonathan Womer, says as much in his memo to department heads dated Aug. 7.

In terms of developmental disabilities issues, Judge McConnell has ordered officials in both the executive and legislative branches, who hold the state’s purse strings, to participate “as needed” in a year-long review of 16 specific issues of concern, and to help find solutions to them.

BHDDH has held initial meetings of five “workgroups” to address issues raised in the judge’s order. In its most recent developmental disabilities community newsletter, the agency put out a call for volunteers interested in working on one of the five committees.

“We are looking for individuals receiving services and family members to participate in their choice of one of five workgroups to add their expertise and input into the system reform,” the newsletter said.

Anyone interested may email Cindy Fusco at Cynthia.Fusco@bhddh.ri.gov.

The newsletter described the workgroups as follows:

1. Eligibility Process Workgroup: This workgroup will look at the process for determining the support needs of each individual and the need to consolidate the application for all pertinent RI services into one process.

2. Appeals Process Workgroup: This workgroup will look at the appeals process for individuals as it relates to eligibility, level of need, or funding level, including the L9/S109 (appeals) process for requesting additional funding.

3. Individual Budgets and Authority Workgroup: This workgroup will look at the process and timeline for developing annual individual budgets responsive to individual needs, allowable costs, and flexibility.

4. Fiscal Workgroup: This workgroup will look at authorizatons, rates, and billing units.

5. Contracts Workgroup: This workgroup will look at the timeline and process by which individuals contract with providers, billing procedures, and how to increase individual control over their services and how their budget is spent.

Judge Closes Nation's First "Sheltered Workshop" Case Early, Citing Great Strides in Providence

Etta Carmadello, Special Education Director for Providence Schools, is interviewed outside U.S. District Court Sept. 26. Onlookers, left to right, are Christopher Coleman, principal at Mount Pleasant High School; Lisa Vargas-Sinapi, Carmadello’s predecessor in the director’s post; Linda Butera Noble, former Director of Community Services at the Birch Academy at Mount Pleasant High School; and Mary Ann Carroll, the lawyer representing the city of Providence. Carroll credited Vargas-Sinapi, Noble and Carmadello in providing critical leadership that ultimately brought a landmark civil rights case against the city to a close. All photos by Anne Peters.

By Gina Macris

The U. S. District Court in Rhode Island has approved an early conclusion to the nation’s first “sheltered workshop” civil rights complaint, brought six years ago against the city of Providence, with federal officials praising the swift, comprehensive, and lasting efforts at Mount Pleasant High School to transform the lives of its students with intellectual and developmental disabilities.

“The hard, tedious work you did has really had a positive effect on people’s lives,” said Judge John J. McConnell, Jr. in a hearing Sept. 26, addressing a packed gallery in a small courtroom filled with state, city, and school officials involved with developmental disability services.

When the U.S. Department of Justice first investigated in 2013, lawyers found the Birch Academy in an isolated classroom in the basement of Mount Pleasant High, where students “collated jewelry” in a sheltered workshop setting that served as a “pipeline” for a lifetime of such work, said DOJ lawyer Victoria Thomas.

The 2013 civil rights agreement in Providence, based on the Olmstead decision of the U.S. Supreme Court, was the first in the nation to address the rights of individuals with developmental disabilities to live, work, and play in their communities under the Integration Mandate of the Americans With Disabilities Act (ADA).

Today, students attend classes integrated with their typical peers. They receive services designed to help them identify and develop their own interests and skills and to try them out in two 60-day work experiences before they graduate, Thomas said. She said those internships are “life-changing” for some people. For example, Miriam Hospital has offered permanent jobs to several Birch graduates.

Mary Ann Carroll, a lawyer representing the city, said that at the outset, former schools superintendent Susan F. Lusi took swift action in empowering the redesign of the Birch program in the summer of 2013, a job that has involved changing the mindset of staff and “parents who thought that a sheltered workshop was appropriate for their children.”

Judge McConnell, in dismissing the case nine months ahead of schedule, said he imagined that resistance was similar to what he encountered decades ago as a lawyer for activists seeking to close the Ladd School, the state’s now-defunct institution for people with developmental disabilities.

“Change is hard when it has to do with human beings – how they perceive themselves and how others perceive them,” he said.

He said he tells own children that he wants them to be “problem-solvers and not problem identifiers.”

“It’s good to see public servants be problem-solvers,” McConnell said.

McConnell asked if either the DOJ or an independent court monitor had any concerns about maintaining the changes at Mount Pleasant in light of the takeover the Providence school system by the state Department of Education.

The “thought of stalling or going backward is unacceptable,” the judge said.

The monitor, Charles Moseley, said he has not spoken to state education officials about the takeover.

But Thomas, the DOJ lawyer, said she had read the outside report which prompted the state to move ahead with the takeover and found “no overlap” between the faults it found in the district as a whole and the compliance efforts at Mount Pleasant High.

Charles Moseley, Left, and Judge John J. McConnell, Jr., in the Judge’s Chambers After Court Sept. 26

Carroll, the city’s lawyer, said the changes have been made in such a way that she does not feel they will “evaporate.” Emphasizing the teamwork of key leaders in the school department and the support of current and former mayors, she said she hopes the successes at Birch can serve as a model for other cities and school departments around the country.

“The message I want people to take away is that when we work together, we can make things happen,” Carroll said.

Moseley himself is leaving the monitor’s post, but his successor will continue to keep tabs on Mount Pleasant as part of another case which grew out of the initial “Interim Settlement Agreement“ of 2013.

At least three departments of state government still have obligations under a broader, statewide consent decree signed in 2014 to bring integration into services for all Rhode Island public high school students with developmental disabilities. Once they become adults, the state must help them find regular jobs and engage in community activities. The statewide consent decree remains in effect until 2024. The Interim Settlement Agreement was to have expired July 1, 2020.

A spokeswoman for the state Department of Education affirmed its commitment to continuing the reforms at Mount Pleasant in keeping with the 2013 interim agreement and the subsequent statewide consent decree, in response to a recent question from Developmental Disability News.

The Providence school department “will be expected to continue to meet the decree requirements, and our agency will continue to provide support and technical assistance to the entire state to ensure that our school communities are meeting the Employment First policy,” said spokeswoman Meg Geoghegan.

The Employment First Policy, which has been adopted statewide, assumes that all adults with disabilities can work in the community, in keeping with the Integration Mandate of the ADA.

The end of federal oversight at Birch, which over the years has involved between 51 and 65 students at any one time, also has marked the end of Charles Moseley’s role as the independent monitor. He announced in July that he planned to step down at the end of September, citing health concerns.

The consent decree gives the state and the DOJ 30 days after they receive a letter of resignation to reach agreement on a new monitor. If they can’t agree in that time frame, according to the consent decree, each side is to submit the names of up to three candidates to the judge, who will make the decision.

In response to recent questions from Developmental Disability News, a spokesman for the state Executive Office of Health and Human Services said: “DOJ and the state continue to work collaboratively on the selection process for a replacement monitor and have kept the Court aware of their work in this important decision.”

For RI Adults With DD, Work Is A Choice, Not A Mandate, Says Federal Civil Rights Consent Decree

Kiernan O’Donnell, foreground, addresses DDD public forum in East Providence, RI, while Charles Moseley, independent federal court monitor in Rhode Island’s Olmstead consent decree case, participates via video link. All photos by Anne Peters.

By Gina Macris

It’s no secret that Rhode Island’s Olmstead consent decree has put the focus on employment opportunities – and challenges –in the system of state-funded services for adults with developmental disabilities.

Four and a half years after the consent decree took effect, the state Division of Developmental Disabilities (DDD) still finds it necessary to punch holes in the myths about what the state’s Employment First policy means and doesn’t mean. Employment First was created to respond to the consent decree’s push toward integration of those isolated in sheltered workshops and day programs, as required by the Olmstead decision of the U.S. Supreme Court, which reaffirmed a key part of the Americans With Disabilities Act.

“We’ve had a lot of people worry that if they don’t work, they won’t get benefits,” said Anne LeClerc, Associate Director of Program Performance.

That’s simply not true, LeClerc told about 80 people crammed into a room at the East Providence Senior Center and an unknown number of others who watched the presentation live on Facebook from the comfort of their homes.

Tina Spears, L, hands Microphone to Anne LeClerc

LeClerc said there’s there’s no requirement that adults with developmental disabilities who receive state-funded services must work, but if they want to be employed, the state will provide job-related supports.

“Not everyone has to work, or is ready for work now,” she said. Individuals may have health or family issues that prevent them from working. It may take “a long time” for people to prepare for work in various ways, LeClerc said.

The federal court monitor in the consent decree case, Charles Moseley, chimed in via video link:

The consent decree requires those who choose not to work to make an “informed choice,” he said. What makes a decision an informed choice are trial work experiences, with the appropriate supports, and a vocational assessment, Moseley said.

And back in East Providence, Kiernan O’Donnell added a third element of informed choice: individualized benefits counseling from a specially-trained expert in how a paycheck might affect Social Security or other financial support received by a person with disabilities.

O’Donnell is co-president of the Rhode Island chapter of the Association of People Supporting Employment First (RIAPSE.)

He said Social Security benefits are so complicated that only specially trained counselors are qualified to recommend work options to individuals receiving public assistance. (The Paul Sherlock Center on Disabilities at Rhode Island College offers free Work Incentives Public Information Sessions. For more information, click here.

The “Variance”

LeClerc, meanwhile, said individuals 62 years old and older who don’t want to work may simply choose to retire.

People younger than 62 who opt out of the job market must submit a variance to the state’s Employment First policy, LeClerc explained, “A variance is just documentation of a decision not to work,” she said.

The variance form asks why “work is not right for you,” LeClerc said. Someone prevented from working by poor health need simply note that as a reason, but no medical documentation is necessary, she said.

Ken Renaud, a leader in the family advocacy group RI FORCE, asked whether the variance is something that must be revisited “every single year.”

“The variance itself is a one-time thing,” LeClerc replied. During individual service plan meetings held annually, those individuals who have previously chosen variances will simply be asked whether they’re still happy with their decisions not to work. If not, they may reconsider.

One member of the audience told LeClerc about the experiences of individuals over retirement age whose individual service plans were rejected because they didn’t have a career development component. Individual service plans are important documents used by DDD to document the services that Medicaid will pay for.

LeClerc said the service plans shouldn’t have been turned back; the career development component could have been simply marked “retired.”

“We’ll work on making that clearer,” she said.

If the problem occurs again, LeClerc told the woman, consumers and their advocates should get in touch with her. ( LeClerc can be reached at 401-462-0192 or Anne.LeClerc@bhddh.ri.gov.

Fact vs Myth

O’Donnell, the RIAPSE leader, sought to give the audience a toolkit for myth-busting that went far beyond the correction of one falsehood. “Knowledge is power,” he said. “Lack of knowledge can prohibit people from pursuing their dreams. Myths sometimes rule the dreams you pursue or don’t pursue.”

O’Donnell’s general advice: get the information in writing. APSE, the national organization of supported employment advocates and professionals, offers its own fact sheet busting the “Top Ten Myths” of Social Security Benefits.

“Let’s not get hung up on barriers when we are able to combat them with knowledge,” he said.

Worries About Funding

Mary Beth Cournoyer, who serves on a community advisory committee, the Employment First Task Force, said that many people looking for jobs need “customized employment” – self-employment or work individually designed to match the skills of a particular employee with the needs of an employer.

For example, someone with a disability can be trained for a part-time job running the paper shredder at a large law firm, freeing support staff for other duties.

The idea of customized employment is “new to families,” said Cournoyer, who has a son with a developmental disability. Parents feel that they may need 30 hours of job coaching, but only have enough funding for 10 hours, she said.

“I don’t want to see jobs and capacity missed because we don’t have enough money for a coach,” she said.

Moseley said Cournoyer’s concerns about funding for services “is a great question for Kerri” – a reference to Kerri Zanchi, Director of Developmental Disabilities.

Funding “is a challenge. It might change,” he said.

Moseley segued to initiatives that might improve the outlook for adults with developmental disabilities and their families, including a commission, chaired by State Rep. Louis DiPalma, D-Middletown, to study the effectiveness of the current funding system. The commission is expected to convene in October.

In August, Moseley said, he talked to private service providers about changes they are making. “There are a lot of exciting things moving forward, but also barriers,” he said.

Zanchi, meanwhile, ticked off initiatives of DDD, including the preparation of an application to the Centers for Medicare and Medicaid Services for approval of a pilot Alternative Payment Model that would give providers a flat rate for a defined bundle of services rather than the current fee-for-service reimbursements that providers say restrict their flexibility to meet clients’ needs.

Zanchi and LeClerc both emphasized improvements in data collection that will help them better identify and respond to the needs of those served by the developmental disability service system.

“Thanks for being here,” LeClerc said with a smile, addressing the audience, “and for bringing these things up constantly.”

Met by a round of laughter, LeClerc added, “I mean that sincerely. “

Lenore Costa

One mother, Lenore Costa, said her son, who has Fragile X syndrome, has not been able to get any developmental disability services in the year the family has lived in Rhode Island. Costa said she moved from Massachusetts, where her son received day, evening and weekend services, to take advantage of a professional opportunity as a nursing executive.

It’s a big job, she said, but her son’s needs are also a full-time job.

Zanchi connected Costa with a DDD social work supervisor, who sat down with her after the meeting.

Deborah Masland, part of a consumer panel that offered commentary on the meeting, said “people’s jobs should not be threatened because they can’t find services for a loved one.”

Masland works at the Rhode Island Parent Information Network with families facing special health care needs and has a 19- year-old daughter, Olivia, who has loved her 12 years of schooling and is now in her first transition year.

Olivia has a work trial in food prep at a Chili’s restaurant 45 minutes a week, and while she’s excited about her t-shirt, her hat, and her special work shoes, her mother said she’s not sure that the experience is preparing her for a job.

Quality of Leisure Activities Questioned

Anne Peters said her 27-year-old daughter has been looking for a job for three years, and any work she finds will be part time. With that in mind, she asked whether the emphasis on jobs is jeopardizing the quality of non-work day services.

Heather Mincey, the assistant director of developmental disability services, said that was a hard question to answer on an individual basis.

Job-related supports cost more than non-work services, but they both come out of a fixed funding authorization for a particular individual. Mincey suggested that over time, the funding for work and non-work activities will even out if job supports eventually can be faded away.

With the closing of some day programs, Peters said, there are a “lot of movies and malls” for “non-work services,” suggesting that more purposeful activities would better meet quality standards.

Mincey acknowledged that it is difficult for providers to shift from center-based care to integrated services. She noted that DDD recently hired two quality assurance officials to work with LeClerc for a year on program improvements.

Peters added that addressing high turnover and low wages among support staff is a critical part of any solution to the problems the system faces.

Christopher Semonelli, vice-president of RI FORCE (Families Organized For Reform Change and Empowerment) said members of the General Assembly need to hear the breadth and depth of concerns expressed at quarterly public forums.

He said RI FORCE will sponsor a candidates’ forum Oct. 3 from 4 to 7 p.m. at the Newport campus of the Community College of Rhode Island.

Advocacy is “huge,” he said, but “you can only eat an elephant one bite at a time.”

(RI FORCE streamed the public forum live on Facebook and the video remains on its Facebook page.)

PUBLIC FORUM UPDATE: Live Streaming Of Monitor’s Appearance Via Facebook Sept. 11

The family advocacy group RI FORCE plans to use its Facebook page to live stream the Sept. 11 public forum sponsored by the Rhode Island Division of Developmental Disabilities, according to the organization’s chief spokesman, Christopher Semonelli. Once the meeting concludes, the video will remain available on Facebook, Semonelli said in an email.

The public forum, focusing on employment, will feature a question-and-answer session by the independent federal court monitor overseeing the implementation of inclusive policies and practices as part of the state’s compliance with a 2014 civil rights decree.

RI FORCE stands for Rhode Island Families Organized For Reform Change and Empowerment, and a link to the group’s Facebook page is here.

The meeting will be from 4:30 to 6 p.m., will be at the East Providence Senior Center, 610 Waterman Ave., East Providence. (related article below.)

(This article originally identified Semonelli as the president of RI Force. He is the vice-president. Wilfred Beaudoin is the president.)

RI DDD Forum Sept. 11 To Feature Q & A With Olmstead Consent Decree Monitor

(The date for the forum initially was incorrect in the headline for this article. It has been corrected.) 

By Gina Macris

The independent federal court monitor overseeing Rhode Island’s compliance with the integration mandate of the Americans With Disabilities Act is scheduled to make a rare public appearance outside the courtroom  – by video conference – Sept. 11 at a quarterly community forum in East Providence sponsored by the state Division of Developmental  Disabilities (DDD).   

According to a DDD announcement, the monitor, Charles Moseley (pictured at left). The forum will focus on employment–related issues, including what it means to make an “informed choice” about work, and how someone who chooses not to work can apply for a  variance to the employment first  policy.

The Sept. 11 meeting will be at the East Providence Senior Center, 610 Waterman Ave., from 4:30 to 6 p.m.

The 2014 agreement with the U.S. Department of Justice requires the state to de-segregate daytime work and non-work services for adults with developmental disabilities over a 10 year period to comply with the integration mandate embodied in Title II of the ADA.

The integration mandate was re-affirmed by the Olmstead decision of the U.S. Supreme Court in 1999, which involved two plaintiffs with developmental disabilities who had been held in a Georgia mental hospital for years after their treatment concluded because of a dearth of housing in the community.  

Rhode Island’s was the first Olmstead consent decree in the nation – but not the last - that addressed the integration of daytime activities for adults with developmental disabilities.  Earlier agreements which drew their authority from the same `High Court decision focused on segregated housing.  

Challenging RI Consent Decree Deadline Looms Sept. 30 For Employment Of Young Adults With DD

By Gina Macris

The state of Rhode Island has already met or surpassed the 2018 supported employment goals for adults with developmental disabilities who were in sheltered workshops or segregated day programs when a federal civil rights consent decree was signed more than four years ago.

But it appears the state will not meet a looming Sept. 30 employment deadline for young people seeking adult services for the first time; specifically, 426 individuals who left high school special education programs between 2013 and  2016.

The prospect of the missed deadline – itself a two-year extension of the original -  suggests a lack of underlying funding, if not for specific employment–related services, then for the entire package of supports that newcomers usually seek when they look for an adult service provider.

For years, representatives of the three dozen private agencies reimbursed by the state Division of Developmental Disabilities (DDD) have told legislators that the amounts they are paid do not cover the actual costs of providing services.

Taking on new clients often means taking on additional debt, they have testified.

To be sure, DDD has pressed forward with reforms on a number of fronts, most prominently a program of enhanced reimbursement rates to private providers for supported employment services and performance payments for job placement and retention. The program was launched in January, 2017. 

 One agency that extended itself to embrace the new program, because officials believed it was the right thing to do, nevertheless ended the year with debt in that account in the high five figures, according to several sources.

In January of this year, the rules were relaxed to allow agencies to spend from the supported employment program to look for jobs for clients already on their caseload, providers have said.  

In 2018, young adult participation in the performance-based employment program  “has not significantly increased despite the increase in available funds for this population,” according to a second quarter report from the state to an independent court monitor in the consent decree case. The report has been obtained by Developmental Disability News.

The General Assembly initially allocated a total of $6.8 million in federal-state Medicaid funding that financed the supported employment program from January, 2017 through June, 2018, but more than half the money was not spent. At the end of June, BHDDH was scheduled to return to the state about $4.1 million, according to a House fiscal report.  State revenue accounts for about $2 million of the total.

As of June 30, a total of 231 young adults were employed, a figure that slightly exceeds the requirement that 50 percent of “youth exit” members have part-time jobs by that date.  

But it has taken the state four years to reach the half-way mark as it works toward the consent decree goal of full employment for young adults, leaving only three months to find jobs for the remaining half of the “youth exit” population – nearly 200 individuals. 

By comparison, the state has found part-time jobs for a total of 334 adults in segregated day programs – more than double the target for Jan. 1, 2019. In addition, 203 individuals who once worked in sheltered workshops now work in the community.  Those placements slightly exceed the 200 the consent decree requires by New Year’s Day.  (Taken together, the employment figures in the various categories do not include 18 clients whose past placements count toward consent decree goals but who no longer receive state services.)

RI DIVISIon of Developmental Disabilities

Among all those who got jobs through the supported employment program, 81 percent have remained employed for at least six months, according to the state.

The state also closed its last sheltered workshop, at the John E. Fogarty Center of North Providence, in the second quarter of the year, according to the state’s report. All participants moved either to competitive employment or day programs, a DDD spokeswoman said.  

While the supported employment program is only about jobs, young adults seeking a service provider for the first time tend to want something else that is more comprehensive, particularly since they work only an average of about 14 hours a week, according to the state’s figures.

They and their families generally want one provider to give them an array of work and non-work supports that take into account all their needs and preferences.

Some choose to bypass a service agency altogether and manage their own program of services, hiring staff and arranging schedules while a fiscal intermediary pays the bills from a funding authorization approved by the state.  Self-directed individuals have reported difficulties getting services from the supported employment program.

Of about 500 so-called “self-directed” individuals and families, it’s not clear how many run their own programs by choice and how many first sought and could not find an agency to provide services appropriate to their needs. The number of self-directed programs has grown in the last few years, by all accounts. In all, about 3,700 adults receive services funded by DDD.  

The impetus for the supported employment program came from an order issued in May, 2016, by  U.S. District Court Judge John J. McConnell, Jr., who presides over the case.

But the supported employment program now in place does not address basic funding mechanisms for adults with developmental disabilities, which, according to the U.S. Department of Justice, incentivize a segregated system of day services. The DOJ criticized both the funding and regulatory structures in the 2014 findings that laid the groundwork for the consent decree.

During the past year, BHDDH has engaged providers, families and advocates in an effort to rewrite DDD regulations, with an eye toward giving consumers of services and their providers greater flexibility to individualize programs and help meet the “integration mandate” of the Americans With Disabilities Act, which the consent decree is meant to enforce.

The proposed changes were submitted late in 2017 to the Office of Regulatory Reform – part of the Office of Management and Budget – but the draft regulations have not yet been posted for public comment on the website of the Secretary of State. 

Kevin Savage, the licensing administrator at BHDDH, said August 21 he expects the Office of Regulatory Reform to complete its work and release the regulations any day.

The federal court monitor in the case, Charles Moseley, has often expressed concern about teenagers and young adults with developmental disabilities because, without appropriate supports, they are at risk for a life of isolation once they leave high school.

The 2014 consent decree originally required the state to find jobs for all members of the young adult, or “youth exit” category,  by July 1, 2016. When the deadline arrived, however, only 29 individuals had jobs in a group that, at that time, numbered 151. 

After the monitor,  Charles Moseley, ordered the state to make sure it counted all young adults who met eligibility requirements for adult services under state law, the size of the “youth exit” population ballooned. It is now 426.

McConnell, the presiding judge, extended the employment deadline for all young adults to 2018. He required half of them to have jobs by June 30 – a goal that has been met – and the remaining 50 percent to find work by Sept. 30.

Going forward, the state said in its report, DDD is planning amendments to contracts with providers to use unspent supported employment money from the first half of the year, as well as other strategies to improve service to the young adult group.

One promising initiative, say state officials, is a cooperative agreement involving the Department of Labor and Training (DLT) and as many as 11 providers of developmental disability services, the Sherlock Center on Developmental Disabilities at Rhode Island College, and the Rhode Island Developmental Disabilities Council to forge relationships with business and generate at least 77 new jobs. The Business Innovation Factory will provide enhanced technical assistance for the overall project, financed through workforce development funds administrated by DLT.

DDD also raised the possibility that some young adults may ultimately choose not to work, a decision that must be documented in a “variance” to the state’s Employment First policy for adults with developmental disabilities. Employment – and the variance process – will be discussed at a public forum Sept. 11 at the East Providence Senior Activity Center, 610 Waterman Ave., East Providence, on Sept. 11.

RI Employment First Task Force Seeks Data To Compare DD Eligibility Policy and Practice

By Gina Macris

A year ago, Rhode Island adopted a policy allowing students with developmental disabilities at least 12 months before they left high school to plan their entry into the adult world.

Now, the Employment First Task Force wants to know whether the policy and the reality are one and the same.

Word of mouth among special education professionals is that in some cases, the families of students notified they will be eligible for adult services from the state Division of Developmental Disabilities nevertheless aren’t given a budget in enough time to make a good adult service plan before they leave school.

Claire Rosenbaum, the Adult Services Coordinator at the Sherlock Center on Disabilities at Rhode Island College, raised the issue at the most recent meeting of the Employment First Task Force July 18.

The task force chairman, Kevin Nerney, of the Rhode Island Developmental Disabilities Council, said he would ask state developmental disability officials in writing to come to the group’s next meeting with data showing how closely the state is adhering to its “eligibility by 17” policy.

The state established the policy in July, 2016, in response to a U.S. District Court order which said it must eliminate service gaps for eligible young adults once they leave high school. Judge John J. McConnell, Jr. had been presented with evidence that eligible young adults sat at home doing nothing for weeks or months after they left high school because adult services were not in place.

Young adults are one of four categories of individuals with developmental disabilities who are protected by a 2014 consent decree requiring the state to move away from sheltered workshops and non-work programs akin to day care toward purposeful activities in the community, with an emphasis on jobs paying at least minimum wage. 

The consent decree envisioned the Employment First Task Force as a group representative of adults with developmental disabilities, families, and community organizations that could serve as a bridge between the public and state government.

The eligibility policy says that, unless there is a need for extra documentation, students should be notified within 30 days of filing applications whether they will receive adult services. If they are eligible, they should be scheduled for an assessment of need, called the Supports Intensity Scale (SIS, within 30 days. And 30 days after the assessment, they should be notified of the individual funding allocations they have received, according to the policy.

A spokeswoman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) said July 20 that "it will take some time" to gather answers to detailed questions about adherence to the timelines in the "eligibility by 17"  policy and additional questions about the SIS.

Questions raised at Tuesday’s meeting about the eligibility timeline overlapped with queries contained in a task force report to Charles Moseley, an independent monitor appointed by the court to oversee  implementation of the consent decree.

In the report, approved by consensus Tuesday, the task force recommends that Moseley collect detailed information on various aspects of the application and funding process and appeals of decisions made by the state. The task force previously has requested application and eligibility data from the state but has not received it, according to the report.

Other sections of the report covered a number of topics, including “person-centered planning,” an individualized approach to arranging services that incorporates a range of personal choices that go far beyond menus of activities that may offered by one provider or another.

Moseley has made it clear he believes person-centered planning is the foundation for compliance with the consent decree,

Nerney, the task force chairman, said in the group's report that he believes such truly individualized planning “could have a greater positive effect on people’s lives than the consent decree itself. “

At the same time, “you can’t destabilize the current provider system while building a new one,” Nerney warned.

Rosenbaum said that truly individualized, or “person-centered” planning, a comprehensive process requiring a skilled facilitator, can’t be done properly with the amount of money available in the state’s developmental disability system.

The next meeting of the Employment First Task Force, open to the public, has been set for Aug. 8 at 2 p.m. at the Community Provider Network of RI, 110 Jefferson Blvd., Warwick. It will adjourn at 3 p.m. to avoid any conflict with the quarterly public forum sponsored by the state Division of Developmental Disabilities. That forum runs from 4 to 6 p.m. at the Coventry Department of Human Services and Senior Center, 50 Wood St., Coventry.

RI Consent Decree Task Force Wants Feds To Look At Accuracy Of Assessments Used In DD Funding

By Gina Macris

This article has been updated.*

Seven months after Rhode Island state social workers were retrained to better administer a questionnaire used to determine Medicaid funding for adults with developmental disabilities, signs have emerged that not all the interviewers may be conforming to the highly scripted assessment process.

On June 13, the chairman of the Employment First Task Force said the group needs more comprehensive information about any continuing problems with the assessment, the Supports Intensity Scale (SIS). He said he will make a request in writing to the U.S. Department of Justice and a federal court monitor, asking them to look into the situation.

Rhode Island is in the fourth year of implementation of a 2014 federal consent decree asserting the rights of adults with developmental disabilities under provisions of the Americans With Disabilities Act to obtain the services they need to secure jobs and enjoy non-work opportunities in the community.

The consent decree is “very clear” on those rights, said the federal court monitor, Charles Moseley, who listened into the meeting in a conference call.

Moseley said he was “disturbed” to hear an account of a SIS interviewer who said that because a young man was employed, even part time, he could not have the extensive behavioral and medical supports that family members and the service providers said the man needed. In fact, without those supports, the young man could not keep his job.  The task force member who addressed Moseley by telephone in the meeting later asked not to be identified.

Another task force member, Claire Rosenbaum, Adult Supports Coordinator at the Sherlock Center on Disabilities at Rhode Island College, recalled two SIS interviews she has attended since the social workers administering them were re-trained. One was done very well. In the other, the SIS supervisor corrected the interviewer twice.

For example, an interviewer may ask whether certain behavioral problems occur, or whether they have occurred in the last year. But Rosenbaum indicated that the proper phrasing for the SIS is to ask what supports are necessary to prevent those behavioral problems.

The latter approach acknowledges the impact of existing supports in helping adults with developmental disabilities enjoy a better quality of life, something parents and providers had routinely complained was missing from the SIS before the interviewers were retrained.

*(On June 15, Claire Rosenbaum said her comments were not intended as criticism of the SIS interviewers but to make the point that the retraining of interviewers was followed up with supervisory coaching as reinforcement. The two SIS interviews she attended were appropriately administered, she said.  She said her comments, while intended to be positive, did not preclude the possibility that an interviewer or two may not be immediately absorbing the training and coaching provided).

SIS Has History of Controversy in RI

The way Rhode Island uses the SIS to establish funding has been criticized both by the monitor and the DOJ since 2014, when Justice Department lawyers found that there was at least the appearance of a conflict of interest because the agency which administers the questionnaire also allocates individual funding.

Since then, the fiscal arm of the agency which administers the SIS, the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, (BHDDH) has been transferred to the Executive Office of Health and Human Services (EOHHS).

But Kevin Nerney, the Task Force chairman, said that to the average Rhode Islander, “the state is the state.”  Task Force members floated the idea of having a non-state entity administer the SIS assessment.  

The American Association of Intellectual and Developmental Disabilities, (AAIDD), which developed the SIS, has urged states to avoid even the appearance of a conflict by making a clear separation, or firewall, between the actual interview and the allocation process.  

A U.S. District Court order issued in May, 2016, required the state to change its policy to specify that the  scores on the SIS will be “consistent with individuals’ support needs, separate and apart from resource allocation considerations.” 

Moseley, the monitor, in reporting to Judge John J. McConnell, Jr., earlier this year, the monitor, Moseley, took that idea a step further. In conjunction with bringing greater individualization to supports for adults with developmental disabilities, he has ordered the state to give him quarterly progress reports as it works toward changing its approach to determining needs and funding.  Instead of translating SIS scores into one of five funding levels, as it does now, the state should use the interview results to first draw up individual programs of support. Only then should it apply funding, according to the model envisioned by the monitor.

Meanwhile, Nerney, the Task Force chairman, said outside the Tuesday meeting that the group has repeatedly asked BHDDH over the past two years – without success - for the number of appeals filed by providers or family members contesting funding levels resulting from the SIS.

While that number has not been made public, state Sen. Louis DiPalma, D-Middletown, disclosed in a Senate Finance Committee hearing in April that the appeals generate a total of $21.5 million to $22 million a year in supplemental payments above and beyond the levels determined by the SIS. That amounts to about 10 percent of all payments made to the private agencies that provide most of the services.

Ten percent is too high, DiPalma said, urging BHDDH officials to rework the way they use the SIS.

Consent Decree Allows Exceptions to 'Employment First'

The Task Force also discussed various approaches to developing a variance process under provisions of the consent decree for individuals with developmental disabilities who can’t work or don’t want to work because they fear the challenges of the regular employment.  Language for one or more kinds of variances or exceptions is being drafted, task members reported.

In conjunction with an interim settlement between the City of Providence and the DOJ in 2013 and the subsequent statewide agreement in 2014, the state has adopted an “Employment First” policy which assumes that adults with developmental disabilities can work at regular jobs, with support.

This policy generally has been welcomed by young people, particularly those who have had internships as part of their special education programs in high school and looked forward to working as adults. 

But that reaction has not been universal.  After the policy was adopted in 2013, BHDDH abruptly closed most sheltered workshops without having any plan in place to gradually acclimate those clients to community-based services. The move generated a wave of anger from families whose loved ones had enjoyed the social aspect of the workshops and took pride in their paychecks, even if they were a fraction of the minimum wage. 

Since Governor Gina Raimondo beefed up the state’s response to the consent decree in 2016, various high-ranking state officials have made public assurances that no one will be forced to work if they don’t want to or are unable, contrary to what some families say they have heard from rank-and-file employees in the developmental disability system. 

In a task force discussion on Tuesday of what a variance to the “Employment First” policy might look like. Claire Rosenbaum, Adult Services Coordinator at the Sherlock Center on Disabilities at Rhode Island College, said she understands that some families are turning to segregated adult day care programs for their loved ones that are outside the system licensed by BHDDH. 

These adult programs, licensed by the Department of Health, may take private payments or federal Medicaid funding, according to anecdotal remarks by various task force members.

Moseley, the monitor, said that if Medicaid funding is involved, federal regulations emphasizing community-based services, similar to those of the consent decree, would apply. Both the consent decree and Medicaid regulations governing Home and Community Based Services (HCBS) derive their authority from the 1999 Olmstead decision of the U.S. Supreme Court. The High Court said that individuals with disabilities must be offered services in the least restrictive environment that is therapeutically appropriate, and that environment is presumed to be the community.

Kiernan O’Donnell, co-president of the Rhode Island Association of People Supporting Employment First, said that if families had more information, they wouldn’t be going to segregated programs.

The Task Force, meanwhile, discussed the importance of planning around the individual needs of a particular person. While the principal goal may be employment for one person, it may be health for another, said Deb Kney, director of Advocates in Action.

Planning is a “process. It’s not a form” for checking boxes, she said. Others agreed.

The Employment First Task Force was created by the 2014 Consent Decree to serve as a bridge between the community and state government, with membership drawn from community agencies serving adults and teenagers with developmental disabilities, those who receive services and advocate for themselves, and families. Nerney, the chairman, represents the Rhode Island Developmental Disabilities Council.

Public Forum on DD Services in RI Scheduled For Nov. 9 at Cherry Hill Manor in Johnston

By Gina Macris

Rhode Island officials will explain continuing changes in the state's developmental disability service system during a public forum Wednesday, Nov. 9, from 4 to 6 p.m. at the Cherry Hill Manor Nursing and Rehab Center, 2 Cherry Hill Road, Johnston.

The meeting will include updates on the search for a director of the Division of Developmental Disabilities as well as details of efforts to implement provisions of a federal consent decree calling on the state to end segregated daytime services that violate the Americans with Disabilities Act.

In addition, state officials will describe technical assistance the state receives from the National Association of State Directors of Developmental Disabilities Services (NASDDDS). The state has asked the organization for guidance in implementing a shift to community-based services, with an emphasis on supported employment, as required by the consent decree.

The application process for adult developmental disability services and the assessment used to assign individual funding to those found eligible also will be reviewed, according to an announcement from the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Individuals who need interpreter services for the hearing impaired or need other accommodations for the meeting are asked to call Emily Limoges at 401.462.3405 or email her at Emily.Limoges@bhddh.ri.gov before Monday, November 7th.

Consumers and their families will have an opportunity to ask questions at the meeting.  The forum, the third to be held this year, represents part of the state's promise to the U.S. District Court, the U.S. Department of Justice, and an independent court monitor to improve communications with the public about the consent decree. BHDDH officials also will give an overview of the department's recently-revamped website at the meeting.

In the meantime, the Division of Developmental Disabilities has released contact information for those who wish to call or email the division directly concerning service-related issues.  

• For funding authorizations, call Donna Phillips at 401-462-1833 or email her at Donna.Phillips@bhddh.ri.gov

• For transportation issues, call Deborah Mazzone at 401-462-3231 or email her at Deborah.Mazzone@bhddh.ri.gov

• For social services, call Heather Mincey at 401-462-3421 or email her at Heather.Mincey@bhddh.ri.gov

• For employment, call Tracey Cunningham at 462-3857 or email her at Tracey.Cunningham@bhddh.ri.gov

Consent Decree Task Force Session Separates "Employment First" Fact From Myth

Photo by Anne Peters

Mary M. Madden, Rhode Island Consent Decree Coordinator, left; and Ray Bandusky, Executive Director of the Rhode Island Disability Law Centerm right. Madden spoke about exceptions to the consent decree "employment first" policy at a recent meeting of the Employment First Task Force.  

By Gina Macris

The 2014 consent decree designed to broaden employment opportunities for persons with developmental disabilities in Rhode Island doesn’t mean that everyone who receives adult services must work.

Yet the idea that there are no exceptions to the consent decree’s “employment first” philosophy has grown into a myth, resulting in considerable confusion and anxiety about the impact of the agreement on those who might not be suited for supported employment in the community.

The issue surfaced in several public forums in the past few months.

For example, in early April, state lawmakers heard from one of their colleagues about a man whose medical records listed 17 surgeries, and yet his family was told his support services for daytime activities would be cut off unless he looked for work.

A few weeks later, at a different forum, state officials were told about a 56-year old man who, according to his sister, doesn’t understand the concept of work. His family also was told he needed to look for work, or face loss of daytime support services.

In fact, the consent decree makes allowances for these kinds of cases. But it appears that its provisions are not well understood by the public, and in at least in some cases, by state employees assigned to help individuals with developmental disabilities and their families.

At a statewide meeting in late March, the organization Advocates in Action poked holes in several misconceptions about the consent decree with a series of wacky skits wrapped around the title “Mythbusters,” a take-off on the movie “Ghostbusters.” Advocates in Action, whose members are consumers of developmental disability services advocating for themselves, produced the show, with support from their peers and staff. The first myth they debunked was the “no-work/ no-funding” notion.

The topic of exceptions to the employment policy in consent decree came up most recently at the May 10 meeting of the Employment First Task Force at the offices of the Community Provider Network of Rhode Island (CPNRI) in Warwick.

The Task Force is a creature of the consent decree, which specifies that its membership must include representatives of consumers, families, and a variety of community organizations focused on developmental disabilities, like the Rhode Island Disability Law Center, the Sherlock Center on Disabilities at Rhode Island College, the Rhode Island Parent Information Network (RIPIN), and others..

The Task Force, whose membership does not include any representative of the state disability agency, is intended to serve as a resource for both government and the community.

At the May 10 meeting, the federal consent decree monitor, Charles Moseley, pointed out in a telephone conference call that the agreement does contain an “employment first” policy. The policy serves as the foundation for remedying Rhode Island’s violations of Title II of the Americans with Disabilities Act, (ADA), which says that disability services and supports should be applied in the least restrictive setting that is appropriate for an individual.

The policy makes “work in integrated employment settings the first and priority service option” for adults with disabilities, according to the consent decree.

That said, both Moseley and the state’s consent decree coordinator, Mary M. Madden, agreed on the exceptions to the policy.

Madden, who attended the meeting in person, elaborated. She said individuals who say they don’t want to work will be asked to first participate in trial vocational and work experiences so they can later make an “informed choice” about employment.

If they ultimately choose not to work, they must apply for a variance to the “employment first” policy, she said, but if they are of retirement age, or have health and safety issues that prevent them from looking for a job, no variance is necessary.

Claire Rosenbaum, Adult Supports Coordinator for the Sherlock Center on Disabilities, said “nobody in the community” knows what the variance process is. The notion that certain individuals would be exempt from seeking a variance “is not being communicated at all,” she said.

Madden said “lots of people have significant health concerns. They may say, ‘my goal is to maintain my health’ and consider employment in the future.”

“If you’re in crisis, you’re not thinking about a job. Without the context of that information,” she said, “just talking about the variances” isn’t useful.

Madden was asked about the criteria for determining that someone has a medical or behavioral issue exempting the individual from pursuing employment. She said she didn’t know. “That work needs to be done very soon,” she said.

It’s complicated, she said. Some people have very complex disabilities who are nevertheless working, she said, “and you don’t want to take that off the table for someone.”  

The consent decree required the court monitor and the parties to the agreement - the state and the U.S. Department of Justice - to “create a process that governs the variance process within 30 days” of the date the agreement was signed.

That signing date was April 8, 2014.  The variance process still hasn’t been hammered out completely, although Madden indicated it would be finished over the summer.

One big unanswered question is the cost of providing services that are required as part of the variance process.

The consent decree says that to be in a position to make an “informed” choice about job-hunting, someone must first participate in a vocational assessment and a sample work experience, as well as receive education and information about employment and counseling about the effect of employment on disability benefits. 

Madden, in a follow-up email, referred a reporter to Andrew McQuaide, Chief Transformation Officer at the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals. Efforts to reach McQuaide Thursday and Friday May 12 and 13 were unsuccessful.

The dissemination of information about the “employment first” policy, as well as exceptions to it, was to have been part of a communications plan the consent decree required to be in place by Sept. 1, 2014, but like the variance process, the communications plan has not been finalized.

The plan, still in the works, is intended to provide public education and information about the decree and connect various segments of the developmental disability community with each other.

Moseley, the monitor, must approve it, and he has been asking for progress reports, most recently in a filing with the U.S. District Court.

At the task force meeting, Madden said “there is agreement in very general terms” on the plan.

Questions of cost and sources of funding have not been resolved for the communications plan, according Sue Donovan of RIPIN, who is familiar with it.

For readers wishing additional information:

Mary M. Madden, the state’s consent decree coordinator, has offered to answer questions about the consent decree via email, at mary.madden@ohhs.ri.gov or by phone at 527-2295.

·        Here is variance language from the consent decree:

L. Any individual eligible for a Supported Employment Placement, but who makes an informed choice for placement in a facility-based work setting, group enclave, mobile work crew, time-limited work experience (internship), or facility-based day program, or other segregated setting may seek a variance allowing such placement. Variances may only be granted after an individual has:

1. Participated in at least one vocational or situational assessment, as defined in Sections II(11) and (16);

2. Completed one trial work experience, as defined in Section II(15);

3. Received the outreach, education, and support services described in Section X; and

4. Received a benefits counseling consultation, as described in Section IV(6).

M. If a variance is granted, the individual must be reassessed by a qualified professional, and the revised employment goal reevaluated, within 180 days, and annually thereafter, for the individual to have the meaningful opportunity to choose to receive Supported Employment Services in an integrated work setting. The Parties and the Monitor shall create a process that governs the variance process within 30 days of entering this Consent Decree.

N. Individuals who seek a variance from this Consent Decree, but who are unable to participate in a trial work experience, pursuant to Section V(L), due to a documented medical condition that poses an immediate and serious threat to their health or safety, or the health or safety of others, should they participate in a trial work experience, may submit documentation of such a condition to the Monitor to seek exemption from Section V(L)(2). Exemptions from trial work experiences will be subject to the Monitor’s approval.

O. The State will ensure that individuals currently in sheltered workshops who receive a variance pursuant to Section V(M) will continue to receive employment services.

The entire consent decree can be found at this link.