RI BHDDH Seeks $20 Starting Wage For DD Workers

By Gina Macris

The state agency overseeing Rhode Island’s services for adults with developmental disabilities is asking for a $20 minimum hourly wage for direct care workers, effective July 1.

The hike was ordered by a federal judge in 2021 to go into effect by 2024, causing consternation in the General Assembly at the time. More recently, outside consultants concurred with the minimum $20 rate.

The request is part of an overall $430.1 million budget proposal for developmental disabilities that the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has submitted to Governor Dan McKee.

McKee is to submit his spending and revenue plan for the state to the General Assembly on Jan. 19.

RI BHDDH

The BHDDH request for developmental disabilities would add $9.3 million to the current budget of $383.4 million to close a budget deficit in the current fiscal year, ending June 30. About $6 million of the shortfall comes from a state-operated network of group homes.

An additional $37.4 million would be needed to reach total funding of $430.1 million for developmental disabilities in the next fiscal year, beginning July 1.

Spending on developmental disabilities makes up nearly two thirds of the entire BHDDH budget, which is currently $597.1 million. For the next fiscal year, BHDDH is seeking nearly $621.4 million, an increase of of about $24.3 million.

Slightly less than half of BHDDH’s operating revenue comes from state tax dollars, with the rest funded by federal Medicaid money. The overall figures also include some other miscellaneous funding sources.

In a cover letter to the governor in November, BHDDH director Richard Charest said the “Division of Developmental Disabilities continues its commitment in complying with the terms of the 2014 federal consent decree and providing integrated employment and day services.”

A series of substantial wage increases is intended to help stem a worker shortage that prevents eligible adults from gaining access to services to which they are entitled, particularly during the the recovery from the COVID-19 lockdown.

Under pressure from the U.S. District Court, which oversees the consent decree, the General Assembly increased hourly wages from $13.18 to $15.75 in 2021, and then to the current $18.00, which became effective July 1, 2022.

Chief Judge John J. McConnell, Jr. ordered state to hit $20 an hour by 2024. And the outside rate reviewers included the $20 minimum wage in preliminary recommendations made public last September. They also recommend a minimum rate of $22.14 in the fiscal year that would begin July 1, 2024.

As much as the state has been criticized by providers, advocates, and consumers and their families during the last decade for underfunding developmental disabilities, adding more money will not solve all the compliance problems the state has with the consent decree.

 Since 2014, the Department of Justice and the federal court system have sought to oversee a cultural shift in the delivery of services which will enable adults with intellectual and developmental disabilities to live regular lives in their communities, exercising choice about where they work and spend leisure time.

In a hearing in U.S. District Court in December, a lawyer for the Department of Justice said the state appeared unlikely to meet a deadline in mid-2024 for full compliance with the consent decree. Amy Romero of the U.S. Attorney’s office in Rhode Island expressed concern about a lack of individualization or “person-centered-ness,” and inadequate accessibility to services in a number of categories, including supports for teenagers making the transition to adulthood.

Romero’s criticism, as well as that of an independent court monitor, stemmed only partly from a chronic shortage of underpaid direct care workers who make up the front line of consent decree compliance.

How the state spends the money, including the degree to which services are individualized, is entwined in the rate review by outside consultants that has been underway for nearly a year. The rate review - itself court-ordered – has not yet been finalized. It covers not only the reimbursement rates to private service providers but the state administrative structures governing the spending.

Preliminary recommendations from the consultants indicated the state wants to continue the existing fee-for-service system, now 11 years old, with many of the same administrative features, including billing for daytime services in 15-minute units and a relatively limited number of individual funding options.

One big change is a proposal to make job-related supports available to all adults with developmental disabilities as an add-on to basic individual budgets.

Officials are working to finish the rate review by the end of January, according to a newsletter of the Division of Developmental Disabilities (DDD) issued Jan. 13.

In the same newsletter, DDD announced that it will advertise eight new positions to help the state fully comply with the consent decree by mid-2024.

The expanded staff will “assist the Division in developing improved communication with the I/DD community and stakeholders, increasing our training capabilities, and enhancing our support for community access and the self-direction population.” (The self-directed population includes individuals and families who design their own programs – roughly a quarter of the caseload of about 4,000 individuals eligible for services.)

The newsletter offered no additional details about the new positions, nor were any immediately available from BHDDH.

The privately-run developmental disabilities system, which includes the self-directed group and private agencies running group homes and offering daytime services, is currently funded for $352.9 million, with about $173.4 million coming from federal Medicaid reimbursements. BHDDH wants $40.7 million more for the private system from both federal and state Medicaid funds, including about $2.9 million to cover a shortfall in the fiscal year ending June 30.

A parallel network of state-run group homes, currently funded for nearly $30.6 million, would need an increase of about $6 million to balance its budget for the current fiscal year, according to the BHDDH budget request. Funding for fiscal 2024, beginning July 1, would continue at the higher level, about $36.5 million.

The administration of former governor Gina Raimondo had tried to privatize the state group homes, but private operators made it clear they were in no financial position to take on the responsibility for additional residents. The plan also faced opposition from unionized state employees who staff the state system, called Rhode Island Community Living and Support (RICLAS). Governor McKee has made it clear he will continue to support RICLAS.

RI APSE To Host Session On Supported Employment Successes; State To Present First Look at DD Rate Review

(This article was updated Sept. 29 to include details for accessing two online rate review sessions. )

Rhode Islanders with developmental disabilities who have received supported employment services over the last six years, their families and the professionals who support them are invited to share their experiences Sept. 29 in an online “community conversation” intended to help shape job-related supports in the future.

The Rhode Island Chapter of the Association of People Supporting Employment First (RI APSE) will host the meeting with the aim of highlighting the successful strategies of pilot programs funded by the Division of Developmental Disabilities (DDD) over the last six years in the hope of informing the next wave of job-related services.

The session has the support of a federal court monitor who seeks to promote compliance with a 2014 consent decree requiring the state to help find competitive employment in the community for adults with developmental disabilities.

The meeting, at noon on Thursday, will be facilitated by Jeannine Pavlak, a board member of the Massachusetts Chapter of APSE who has 32 years’ experience providing supported employment services to people with disabilities.

Pre-registration is required for the session. To pre-register, click here.

Reminder: DD Rate Review Recommendations To Be Aired

Meanwhile, on Sept. 28 and Sept. 29, consultants will make two presentations of preliminary recommendations for new reimbursement rates for private providers of developmental disability services that are intended to help the state comply with the consent decree. No pre-registration is required for these online sessions.

The first, with technical details aimed at providers, is on Sept. 28 from 12:30 to 3 p.m. To join, click here. Update: There is a meeting passcode and it is 186251, according to a BHDDH spokesman.

The second, for consumers, families and the community, is Sept. 29 from 1:30 to 3:30 p.m. To join, click here. (The link allows listeners to join using internet audio and also gives two other options for access. )

Interested stakeholders will have until October 21, 2022 to submit comments. Recordings, materials, and instructions for submitting comments will be posted after September 29 on the website of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals. To go there, click https://bhddh.ri.gov/developmental-disabilities/initiatives/rateand-payment-methodology-review-project.

RI DD Employment Chief To Join AccessPoint RI

By Gina Macris

Tracey Cunningham, a key figure in Rhode Island’s employment efforts for adults with developmental disabilities, will leave state service to become head AccessPoint RI, a private non-profit provider of services to children and adults with intellectual and developmental (IDD) challenges.

pHOTO ribhddh

She will succeed longtime CEO Tom Kane on May 2, according to an open letter on the agency’s website from the chairwoman of the AccessPoint Board of Directors.

Cunningham’s departure from the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) comes at a critical time in the implementation of a 2014 civil rights consent decree, which emphasizes “employment first” for adults with developmental disabilities.

With a 2024 deadline looming for full implementation, Rhode Island faces a severe shortage of the workers needed to meet the employment goals spelled out in the consent decree. To reach full compliance, the U.S. District Court judge overseeing the consent decree has ordered the state to overhaul the entire service system for adults with intellectual and developmental disabilities.

Cunningham’s boss hinted earlier this year that she might be leaving BHDDH.

At a virtual public forum Feb. 9, Kevin Savage, Director of the Division of Developmental Disabilities, said Cunningham would be “leading the charge” in implementing any new supported employment program in the next fiscal year “if Tracey stays with us, and puts up with us longer.”

Savage was responding to a viewer’s question about the future of supported employment services at BHDDH. The third version of a Person Centered Supported Employment Performance Program (PCSEPP) expires June 30.

Savage said that program probably will not be renewed but funding for supported employment services will continue.

Last week, a BHDDH spokesman said of Cunningham: “We greatly appreciate her work to improve employment options for adults with intellectual and/or developmental disabilities. She will be missed, and we wish her the best in her new position.”

Cunningham has served as Associate Director for Employment Services in the Division of Developmental Disabilities since July 2016, according to her LinkedIn page. The post was created in response to the demands of the consent decree.

Elissa O’Brien, chairwoman of the AccessPoint Board, said Cunningham has more than 30 years’ experience in the field of intellectual and developmental disabilities, as well as two masters’ degrees, one in rehabilitation counseling and the other in strategic management and innovation.

AccessPoint has “lots to be thankful for” as Cunningham takes the reins from Kane, O’Brien said. “Under his leadership, the organization has grown and now services close to 1,000 children and adults annually. We are forever grateful to Tom for his hard work and dedication to our organization and to individuals living with IDD,” she said.

With April 9 marking the start of the eighth year of consent decree implementation, BHDDH could not say who might succeed Cunningham or describe specific plans for supported employment services in the next fiscal year, just three months away. A spokesman said only that “BHDDH will work with the stakeholder community to determine what that future programming will look like.”

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.

Two Additional Deaths Reported Among RI DD Group Home Residents

The incidence of coronavirus in Rhode Island’s group homes for adults with developmental disabilities remains relatively low – at a little over 7 percent – but in the last two weeks there have been two more deaths among residents in congregate care, for a total of 6 fatalities.

Of some 1180 persons living in private or state-run group homes, 88 have tested positive for COVID-19, according to a spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH.) Seventeen of the 88 are hospitalized, the spokesman said May 4.

Previously, one group home staff member was reported as a casualty in the COVID-19 pandemic. No updated figures on additional deaths among staff, if any, were available, the BHDDH spokesman said.

The release of the Department of Health’s (DOH) 34-page “Crisis Standards of Care Guidelines” April 30 has drawn criticism from Disability Rights Rhode Island for failing to offer specific assurances that those hospitalized would not be subject to health care rationing because of their disabilities.

“We find the standards concerning,” said Morna Murray, the DRRI executive director. “The state has distanced itself from specific directives and is relying on hospitals to develop their own individual standards.”

She said the standards are “problematic and vague with respect to prioritization, triage processes, exclusion from treatment, and the suggested triage and decision-making tools in the Appendix,” Murray said.

A DOH spokesman responded that state’s health agency has a “commitment to ensuring equitable and just access to care for all Rhode Islanders, especially more vulnerable populations.

“We worked hard to try to have that commitment reflected in the document that was developed. Having said that, this is important feedback that we are going to consider internally as we look forward and think about ways that we can better ensure health equity for everyone throughout the state,” said the spokesman, Joseph Wendelken.

Murray said DRRI will follow up with partners in the community and other experts to provide a formal response to “these unsatisfactory standards.”

The standards are not now in effect and would be implemented, under the direction of DOH, only if the capacity of the overall health care system is overwhelmed, DOH explained in a press release accompanying the document. To read it, click here.

“The swift construction of temporary surge or “alternate hospital sites” in Rhode Island as a part of the State’s coronavirus disease 2019 (COVID-19) response provide another buffer from the need to implement these plans, should Rhode Island experience a surge in the near future,” Wendelken said in statement.

DDD CLARIFIES RULES ON STAFFING

In a recent COVID-19 update, the state Division of Developmental Disabilities clarified earlier messages which some found confusing about whether those who independently direct a loved one’s program of supports may hire a family member to provide care.

The most precise information is that “during the COVID-19 pandemic, people who ‘self direct’ can hire any qualified adult, including family members and parents, with the exception of legal guardians.”

BHDDH officials are conducting an additional legal review to determine whether individuals receiving services who have legal guardians can hire those guardians as employees to provide supports that usually would be provided by staff outside the family, according to the newsletter.

Employees typically must pass a background check before they are hired, according to the newsletter, but during the COVID-19 crisis, the rule has been relaxed to allow for a check to be conducted within 60 days after the end of the current state of emergency.

The newsletter covers additional COVID-19-related topics of interest to those with developmental disabilities, their families, and those who work in the developmental disabilities field. To read the newsletter in full, click here.

This article has been corrected to reflect the fact that there have been two additional deaths of Rhode Islanders with developmental disabilities in congregate care in the last two weeks; one April 21 and another April 28,

Rebecca Boss, Director Of RI BHDDH, To Step Down Dec. 31

By Gina Macris

Rebecca Boss * Photo By Anne Peters

Rebecca Boss, Director of the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) for three and a half years, will step down at the end of this month - in three weeks - to pursue “new opportunities,” according to a departmental announcement December 11.

As director, Boss has supervised the state’s services for adults with developmental disabilities, mental illness, and substance abuse disorders. She has brought stability and effective leadership to the Division of Developmental Disabilities, becoming actively engaged in implementing a 2014 Olmstead federal civil rights consent decree, which calls for a transformation of daytime services for some 4,000 adults with developmental disabilities over a 10-year period.

During her tenure, Rhode Island has emerged as a national model for its response to the opioid crisis, and BHDDH has begun a campaign to combat the stigma of mental illness and substance. But correcting chronic shortcomings at the state hospital has proved problematic. Early in Boss’ tenure, the Eleanor Slater Hospital in Cranston nearly lost its accreditation. And last month, state and federal inspectors found widespread deficiencies in standards of care at the Zambarano unit of the hospital in Burrillville.

In a statement, Boss said, “I have truly enjoyed the 15 years I have spent at the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals serving some of Rhode Island’s most vulnerable individuals.”

“I’m grateful for the opportunity I’ve had to work for the Governor and the people of this state. We’ve built an amazing team of compassionate staff who are dedicated and committed to this work,” she said.

Boss, previously the department’s top official in behavioral healthcare, became acting director in mid- 2016, succeeding Maria Montanaro, and was confirmed by the Senate in May, 2017.

Governor Raimondo said, “Becky Boss is a dedicated public servant, a compassionate leader, and a champion for Rhode Island’s most vulnerable residents.”

“I’m grateful for her 15 years of service to our state, especially her work as Director of BHDDH the past three and a half years. There’s no question that Rhode Island has benefitted from her leadership,” Raimondo said in a statement.

State Sen. Louis DiPalma, D-Middletown, the General Assembly’s most prominent advocate for people with developmental disabilities, said Boss is well respected and “will be missed.” In his 11 years in the Senate, DiPalma said, she is the only gubernatorial nominee he has testified for.

A BHDDH spokesman said the details of Boss’ “next steps will be forthcoming.” The search for a new director will begin immediately, he said. The spokesman could not immediately say whether there will be an interim director. Boss’ annual salary is $141,750.

In the field of developmental disabilities, Boss is leaving in the middle of an 18-month long rate review and analysis of the BHDDH fee-for-service reimbursement system for private service providers. The existing payment methods, enacted in 2011, have been criticized both by the U.S. Department of Justice and the former court monitor in the consent decree case.

Another big initiative underway in the Division of Developmental Disabilities is an effort to reach consensus with the community on the parameters of third-party case management which would satisfy rules of the federal Centers for Medicare and Medicaid Services for programs of care that are free of conflict among funding interests, direct service providers and case managers. The bureaucratic name for the initiative is “Health Home,” but it is neither a home nor a health care center.

RI Faces Uphill Climb Halfway Through DD Consent Decree Implementation

Bar graph from RI’s latest report to federal court monitor indicates RI is on track to meet one of three categories of employment targets in 2019. “Youth Exit” refers to those those who left high school between 2013 and 2016. “Sheltered Workshop” and “Day Program” refer to persons who spent most of their time in those respective settings when the consent decree was signed.

By Gina Macris

Halfway through Rhode Island’s decade-long agreement with the federal government to ensure that adults with developmental disabilities can work and enjoy leisure time in the larger community:

• Rhode Island has linked 38 percent of its intellectually challenged residents to acceptable jobs, prompting a federal monitor to warn that it needs to step up its game

• Service providers argue that continued progress will take a larger financial investment than the state is making

• Success stories abound but some families remain skeptical about whether the changes will ever work for their relatives.

Five years and three months after Rhode Island signed a federal consent decree to help adults with developmental disabilities get regular jobs and lead regular lives in their communities, 857 people have found employment. Yet, 1,398 others are still waiting for the right job match or for the services they need to prepare for work.

The pace of adding individuals to the employed category has slowed dramatically. Only 37 individuals were matched with jobs during the first two quarters of the current year. To meet its overall employment target for 2019, the state will have to find suitable job placements for 199 more adults. That would require a pace in the second half of the year that is five times faster than the first half.

Though the federal consent decree was signed in 2014, meaningful efforts to comply with its terms did not get underway until two years later, when a federal judge threatened to hold Rhode Island in contempt and levy fines if it did not take numerous and precise steps to begin compliance in a systematic way. At that point, state officials were struggling even to come up with an accurate count of the number of individuals protected by the consent decree, so inadequate was its data collection.

The active census of the consent decree population has grown since 2016, when the judge ordered the state to improve its record-keeping and the monitor forced the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) and the Rhode Island Department of Education (RIDE) to look again at special education students who might be eligible for adult services.

The most recent figures show that there are 3,764 intellectually challenged adults active either with BHDDH or RIDE who covered by the consent decree.

Of that total, 211 were employed in the community prior to the consent decree. Some have signaled they don’t want to work, either because they are of retirement age or for other reasons. Nearly 1,200 others are still in school and not yet seeking jobs.

Of the 2,255 adults who must be offered employment over the life of the consent decree, 38 percent have landed jobs.

The figures are re-calculated every three months.

Employment data from the state’s report to the consent decree monitor as of June 30, 2019. broken down by categories of persons who must be offered jobs. “Youth exit” refers to those those who left high school between 2013 and 2016. “Sheltered Workshop” and “Day Program” refer to persons who spent most of their time in those respective settings when the consent decree was signed.

Rhode Island agreed to overhaul its services for the developmentally disabled population after an investigation by the U.S. Department of Justice found the state’s over-reliance on segregated sheltered workshops and day care centers violated the integration mandate of the Americans With Disabilities Act.

People with disabilities have the civil right to the supports and services they need to live as part of their communities to the extent that it is therapeutically appropriate, the U.S. Supreme Court said in the Olmstead decision of 1999, which upheld the integration mandate. In other words, integration should be the norm, not the exception.

Some people couldn’t wait to get out of sheltered workshops when the consent decree was signed and quickly found jobs in the community with a little bit of assistance. But some families with sons and daughters who have more complex needs saw sheltered workshops close without any transition plan. For some of them, the consent decree continues to represent a sense of loss.

At a recent public forum, Kerri Zanchi, director of the Division of Developmental Disabilities (DDD), and Brian Gosselin, the state’s consent decree coordinator, had just finished applauding the successes of those who have found jobs or are on their way to shaping their careers, when Trudy Chartier spoke up on behalf of her daughter.

Trudy Chartier * all photos by Anne Peters

Her daughter is 55, deaf, has intellectual and behavioral problems and uses a wheelchair, Chartier said. She wants a job in the community and she’s been looking for five years.

Her daughter was in a sheltered workshop for a while, Chartier said, and “she loved it.”

“She didn’t care about making $2 an hour,” her mother said, and she made friends there. Now, she said her daughter “is not getting anywhere” and is “so dissatisfied.”

At the age of 80, Chartier said, she doesn’t have the energy she once had to help her daughter change things.

Later, Douglas Porch sounded a similar concern. “I can understand that the idea is to get them into the community, but what it’s actually done is destroyed my daughter’s community, because you’ve taken away her friends.”

“She’s in a group home, with nothing for her to do,” Porch said.

Zanchi, the DDD director, said that the consent decree certainly has changed the way people receive services. The intent is “not to isolate, but the opposite, to build communities,” she said.

“If that’s not working and it sounds like it’s not, we need to hear about that,” Zanchi said. “We can help you so that she can engage with her peers more effectively.”

Another parent, Greg Mroczek, also spoke up. “In terms of all the possible models, isn’t a sheltered workshop for a segment of the DD population the best possible model? Isn’t that what people are saying? It worked for my daughter as well,” he said, and nothing has replaced it.

Kerri Zanchi

He asked whether the sheltered workshop is “off the table” in “any way, shape or form” in Rhode Island.

Zanchi talked about the state’s Employment First policy, which values full integration and“investing in the skills and talent of every person we support.”

“We know that individuals of all abilities have had successful employment outcomes. We also know that employment is not necessarily what everybody wants,” Zanchi said.

“Striking that balance is a challenge,” she said. The state’s developmental disability service system and and its partners are working hard to help meet people’s needs, Zanchi said.

Rebecca Boss

When Zanchi was hired at the start of 2017, she was the first professional in developmental disability services to run the Division of Developmental Disabilities in about a decade.

Zanchi and Rebecca Boss, the BHDDH director, have improved the bureaucratic infrastructure to foster employment, professional development, quality control, and communications with families and consumers and the private agencies the department relies on to deliver services that will meet the monitor’s standards.

For example, the developmental disabilities staff has been expanded and reorganized. An electronic data management system has been introduced. BHDDH invited providers and representatives of the community to the table to overhaul regulations governing the operations of the service providers and has maintained a quality assurance advisory council, with community representation.

Broadly speaking, the leadership of Boss and Zanchi has set the tone for a philosophical shift in which employment is part of a long-range campaign to open the door to self-determination for adults with developmental disabilities – in keeping with the mandates of the consent decree. The state’s last sheltered workshop closed in 2018.

The consent decree also has fostered a revival of advocacy in the community and the legislature, where there had been a vacuum once an older generation of leaders had passed on.

So why isn’t the glass half full at the halfway point in the decade-long life of the consent decree? In a word, money.

Advocates say a central issue is the lack of an investment in the ability of the system to reach more people with the array of services that will open doors and enable them to find their places in the community.

To satisfy the requirements of the consent decree, the state relies on the efforts of private agencies that provide the actual direct services.

The federal monitor in the consent decree case, Charles Moseley, has asked the state to get to the bottom of what he described as a lack of “capacity” on the part of these private agencies to take on new clients.

BHDDH is circling around the funding issue with an outside review of the fee-for-service rate structure governing developmental disability services. That analysis is designed to expand the analytical capabilities BHDDH, leaving the policy decisions to the department leadership.

Advocates for adults with developmental disabilities, most prominently state Senator Louis DiPalma, D-Middletown, say there must be a public discussion about how much money it will take in the long run to complete the transformation from sheltered workshops and day care centers into one that assists people in finding their way in life. DiPalma chairs a special legislative commission studying the current fee-for-service system.

In the meantime, DDD is soliciting a proposal for the third iteration of its performance-based supported employment program, which is designed to focus on people who have never held a job. This group includes young people completing high school and seeking adult services for the first time, as well as adults who face multiple challenges and would find it difficult to fill the standard job descriptions put out by employers.

The new Person-Centered Supported Employment Performance Program (PCSEPP 3.0) is expected to launch Jan.1 with an emphasis on “customized” employment, tailored to match an individual’s strengths and interests with the needs of an employer who is willing to carve up the work at hand in a non-traditional way.

The concept of customization is not new.

In Rhode Island, a few adults with developmental disabilities have had customized employment for many years, most often arranged with the support of their families, who hire staff and direct a unique array of services for them rather than relying on an agency.

In addition, the Rhode Island Council on Developmental Disabilities promotes self-employment, a form of customization, through a business incubator created with the help of the Real Pathways RI Project sponsored by the Governor’s Workforce Board.

The DD Council highlights the products and services of self-employed adults with developmental disabilities as part of its annual holiday shopping event, Small Business Saturday Shop RI, scheduled this year for Nov. 30 at the Crowne Plaza Hotel in Warwick.

The U.S. Department of Labor defines customized employment as a “flexible process designed to personalize the employment relationship between a job candidate and an employer in a way that meets the needs of both. It is based on an individualized determination of the strengths, needs, and interests of the person with a disability, and is also designed to meet the specific needs of the employer.”

Since the supported employment program started in 2017, providers have expressed concerns that, because it is tied to the fee-for-service reimbursement system, it does pay for initial investments the agencies might have to make to participate.

Those concerns persisted during a meeting between DDD officials and potential applicants for the customized employment program in mid July. At the providers’ request, DDD has extended the application deadline to October 4.

Womazetta Jones

The state’s new Secretary of Health and Human Services, Womazetta Jones, has promised to be a careful listener to the concerns of the developmental disability community.

Speaking at the recent public forum, after just eight days on the job, Jones acknowledged the state’s efforts to improve services for adults with developmental disabilities but also cautioned against complacency.

Even though the state has substantially increased funding for developmental disabilities in recent years and gained “stable and effective leadership” at BHDDH, “that doesn’t mean anyone in this room or state government is content with recent progress,” she said.

“The moment we think we don’t have more to do, is the moment we have lost our way,” Jones said, signaling that she is available for further discussion of issues affecting people with developmental disabilities.

RI Revises Supported Employment; Providers And Families Invited To Information Sessions

By Gina Macris

The second year of a program to help Rhode Islanders with developmental disabilities find jobs will offer extra bonus money to encourage financially strapped private agencies to seek new clients, particularly young adults.

Zanchi     Photo by Anne Peters  

The state began the “performance-based” program last January to avoid federal court sanctions for failing to implement a 2014 consent decree aimed at giving individuals with disabilities greater access to regular jobs and integrated non-work activities.

“We’ve learned a lot in this first year,” said Kerri Zanchi, Director of the Division of Developmental Disabilities (DDD). Zanchi, the first developmental disabilities professional to head DDD in at least a decade, began work in Rhode Island shortly after the supported employment program kicked off a year ago.

Zanchi elaborated on the status of the program, in which private agencies provide supportive job-seeking and job-retention services, during a telephone interview Jan. 5.

She said that in the initial contract year, which ended in December, 22 private agencies offered supported employment services to about 440 adults with developmental disabilities, with about 150 gaining employment at minimum wage or higher.

In the coming year, Zanchi said, she hopes the opportunities for enhanced performance payments and other changes prove “more responsive to the needs of consumers” and that the number of providers will expand. 

DDD will host information sessions Monday, Jan. 8 and Friday, Jan. 19 for private providers seeking to renew their contracts or establish new ones and for so-called “self-directed” families, who take on the design and direct supervision of a loved one’s activities. Few of these families have been able to participate in the performance-based program during its first year, according to anecdotal reports. 

A key addition to the menu of performance payments to providers is a bonus of $600 for each new client who signs on for employment-related services, or $1,000 for young adults who left high school between 2013 and 2016. These bonuses are due once the new client has received 20 hours of employment-related supports.

The consent decree places particular emphasis on young adults with intellectual or developmental disabilities, because investigators for the U.S. Department of Justice believed they are at heightened risk for isolation and segregation as they move from high school to adult services.

The consent decree draws its authority from the Olmstead decision of the U.S. Supreme Court, which reinforces the mandate for integrated services in the Americans With Disabilities Act

The young adult group also is the only segment of the consent decree population – more than 3,000 individuals altogether –for which the state is significantly out of compliance with court approved targets for job placement.

A reluctance among established agencies to expand their client roster has resulted in limited choices for the families of young adults; prompting them to direct their own services. But that choice also has made it generally more difficult to access the supported employment program, according to various reports about families’ experiences during the first year of the program.

Providers have told state officials that in many cases they can’t take on new clients because of low reimbursement rates and high staff turnover, and because the bonuses of the initial cycle of the supported employment program did not pay for the costs both of training new workers, as well as providing the actual services.

The graduation rate for a tuition-free training program offered by the Sherlock Center on Disabilities at Rhode Island College is 40 percent, with students dropping out for a variety of reasons, most of them related to high turnover and short-staffing at the provider agencies.  

In the second year, providers can expect an increase of $460 for training each new job coach, from $350 to $810 per trainee, according to materials from the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), which were released by Zanchi.

The information sessions will be at the Arnold Conference Center in the Reagan Building of the Eleanor Slater Hospital, 111 Howard Ave., Cranston, Monday, Jan. 8, from 2 to 4 p.m. and Friday, Jan. 19, from 9 to 11 a.m.

In 2016, just after a U.S. District Court judge ordered the state to come up with a new “reimbursement model” that would give adults with developmental disabilities access to regular jobs. Shortly after that, the General Assembly allocated $6.8 million in state funds to finance what became the performance-based supported employment program.

Besides the bonuses, the revised program includes increased allocations – a total of $8,000 a year per client, according to the latest BHDDH figures – for provider reimbursements for employment services.

Zanchi said that the original $6.8 million allocation will continue to fund the first six months of the second year of the performance-based program until June 30, when BHDDH expects to return an estimated $2 million to the state.

The return of the estimated $2 million in unused supported employment funds was part of a deficit reduction plan outlined by BHDDH director Rebecca Boss Nov. 30 to close an estimated $15.9 millionf departmental deficit, including $12 million in developmental disabilities.. But it is well-understood within BHDDH that from a fiscal perspective, supported employment must continue because it is a court-ordered service.  

BHDDH has requested new funding, with projected utilization based on the first full year of programmatic experience, for the state’s next fiscal year beginning July 1, Zanchi said.

She did not say how much BHDDH  will seek for supported employment. Governor Gina Raimondo is expected to submit her budget to the General Assembly later this month.

RI Proposes E-Records For DD System That Raise Questions About Consent Decree Compliance

By Gina Macris

For the last five-and-a-half months, Rhode Island has been considering eight proposals for an electronic case management system to keep track of services for adults with developmental disabilities.

In part, the electronic system would satisfy demands for up-to-date information so that federal officials could better gauge the state’s compliance with a 2014 consent decree requiring it to shift to community-based daytime services to comply with provisions of the Americans With Disabilities Act.

But the solicitation also indicates that the design of the electronic case management system could conflict with implementation of other requirements of the consent decree, which call for individualization of services and a more flexible approach to delivering them.

Among the vendors submitting proposals is Deloitte Consulting, the company involved in the chaotic rollout of a statewide public assistance benefits computer system known as the Unified Health Infrastructure Project (UHIP), which went live last September. 

At last count, more than 10,000 individuals, which include those with disabilities, are experiencing difficulties with food stamps and other public assistance and medical benefits, according to state officials. And UHIP has contributed to confusion about caseload estimates, used by policy makers to calculate demands on the budget that begins July 1.

Deloitte and the state are still trying to fix UHIP and are negotiating a financial settlement for the $364 million project, although the company recently gave the state a $27 million credit, primarily to cover the cost of re-hiring workers previously let go to help de-bug the system.

The state is appealing a federal fine of $805,197 over the implementation of the project, and the U.S. Attorney’s Office is investigating separate allegations that the federal-state Medicaid program was billed for services that were not provided in connection with the UHIP rollout.

The language of the 116-page request for proposals concerning  the developmental disability program, issued last fall,  indicates that the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) would conduct business as usual in its funding and delivery of services in two key areas:

• The use of a mathematical formula to translate the results of a standardized needs assessment called the Supports Intensity Scale (SIS) into one of five levels of funding, which in turn would define the scope of services, or “service packages.”
• The continuation of a fee-for-service billing system for private providers, which pays out only when a service is provided face-to-face, in 15-minute increments during the day, and in 24-hour segments for residential programs, with rates subject to change on a quarterly basis.

The solicitation remains active even as the Division of Developmental Disabilities has signaled it is gearing up for an overhaul of existing regulations to comply with the consent decree. And in a report filed with the U.S. District Court in April, the state agreed to explore new approaches to funding to follow-up on statistics that showed at least one third of private agencies don’t have the ability to expand the kinds of services the consent decree demands.

The independent federal court monitor who is overseeing implementation of the consent decree, Charles Moseley, has said that funding must respond to the individual’s “goals and preferences” as expressed in an individual support plan.

In other words, the money should follow the person, rather than the other way around, as is currently the case.

During the month of May, the Division of Developmental Disabilities and the Sherlock Center on Disabilities at Rhode Island College have invited the public to attend presentations on the central idea behind personalizing services, or "person-centered" thinking; the notion that individuals with disabilities should have more control over their lives.

The regulatory overhaul will be based on that personalized approach, with families, consumers, and providers participating in the rule-writing, Kerri Zanchi, the division director, said at a recent public forum. 

Asked after the meeting how how changes in practice brought about by the new regulations would be funded, Zanchi said, “When we figure out what it (the service system) would look like, then we need to figure out the funding for it.”

The consent decree, meanwhile, also criticizes the fee-for-service reimbursement model for private providers as insufficiently flexible to accomplish the its goals, which focus on individualized community-based supports for jobs and leisure activities.

In response, BHDDH has established a pilot program for supported employment, which provides bonuses for staff training, job placement, and job retention. It has resulted in 40 new jobs since January, according to a BHDDH official.

But in light of the recent survey indicating gaps in providers’ ability to take on new clients, BHDDH has agreed to take a deeper look at funding.

Through a BHDDH spokeswoman, state officials declined to comment on the solicitation for proposals while bids are under evaluation. The eight bids were opened last Nov. 29, according to the website of the state purchasing office.

The request for proposals appears to respond, at least in part, to complaints about data collection expressed by both Moseley, the consent decree monitor, and the U.S. Department of Justice.

Moseley has said the information was so inadequate that it was impossible to tell whether the state was meeting employment targets and other requirements.  Just a year ago, state officials were struggling to come up with an accurate count of the total number of adults with developmental disabilities who were protected by the agreement.

Since then, the state has adopted a work-around to the existing system that can respond to specific queries from the monitor or the U.S. Department of Justice, but not on a real-time basis. The patchwork approach enlists data collected quarterly by the Sherlock Center on Disabilities at Rhode Island College. 

The budget for the electronic case management system has not been made public. The request for proposals (RFP) anticipated an initial three-year contract period beginning March 1.

Asked about the apparent delay, the BHDDH spokeswoman, Jenna Mackevich, said in an email that “it’s important that the agency take the time necessary to thoroughly evaluate proposals and conduct its due diligence during the purchasing process. “

During the evaluation period, the state also has allowed the expiration of a 120-day ban on vendors changing their proposals, which is spelled out in the RFP. The RFP said the state would consider not only price but various aspects of functionality in the proposals as part of its evaluation.  Vendors would be required to demonstrate their products.

To keep costs down, the state is seeking “off-the-shelf” software with customization not to exceed 15 percent. 

According to the RFP, the new electronic case management system would computerize all record-keeping for the developmental disability service system, allowing access by families, providers, and BHDDH staff for multiple purposes.

Besides Deloitte, the vendors are Consilience Software, of Texas;  Eccovia Solutions, Inc., of Utah; FELCOM, Inc., of Maryland;  FOOTHOLD, Inc. of New York; Mediware, of Virginia; Netsmart Technologies, Inc., of Kansas; and Therap Services, Inc., of Connecticut.

Jennifer Wood, Leader of RI DD Consent Decree Compliance, To Leave State Government

Photo by Anne Peters

By Gina Macris

Jennifer L. Wood, largely responsible for accelerating Rhode Island’s lackluster response to a federal consent decree affecting adults with developmental disabilities, is leaving state government to become director of the Rhode Island Center for Justice.

The non-profit public interest law center works with community groups and the Roger Williams University School of Law to strengthen legal services and advocacy on issues that reflect the most pressing needs of low-income Rhode Islanders, including housing, immigration, and workers’ rights.  

Miriam Weizenbaum, the board chair for the Center for Justice,  announced the appointment Wednesday, May 3, saying that Wood’s legal background in public interest law, combined with her extensive experience in education and health and human servicesin state government, “makes her an ideal leader for the Center for Justice at a time when basic rights are under significant challenge.” 

Wood was deputy secretary and chief legal counsel to Elizabeth Roberts until Roberts resigned in mid-February as head of the Executive Office of Health and Human Services amid fallout from the UHIP fiasco, the botched roll-out of a computerized Medicaid benefits system. Thousands of Rhode Islanders were left without a wide range of benefits, including from food stamps, health coverage, subsidized child care, and even developmental disability services. At the time Roberts left, Wood was demoted to general counsel.

AshleyG. O’Shea, spokeswoman for OHHS, noted in a statement that Wood has devoted two decades of her life to state service and said, “We wish her the best in her new endeavor.” 

In March, the office of the U.S. Attorney in Providence issued a demand for UHIP documents, saying it is investigating the “allegation that false claims and/or payment for services and/or false statements in support of such payments have been submitted to the U.S. government.“

In a statement May 3, Wood indicated that since the November election, she has been considering a change in career to go back to her roots. As a lawyer in the private sector, her work emphasized civil rights and disability rights. She represented inmates at the Rhode Island Training School and special education students, among others who otherwise might have lacked a legal voice.

Wood joined state government in 1998 as chief of staff at the Rhode Island Department of Education, leaving in 2007 to work as Roberts’ second-in-command after the latter was elected Lieutenant Governor. When Governor Gina Raimondo appointed Roberts as Secretary of Health and Human Services in 2015, Wood followed as deputy secretary and chief legal counsel.

At the end of 2015, when U.S. District Court Judge John J. McConnell, Jr. signaled that he would personally oversee enforcement of the consent decree affecting daytime services for adults with developmental disabilities, Wood took charge of moving the implementation forward.

At that point, the agreement had brought virtually no change to the lives of adults with developmental disabilities since it was signed in April, 2014. By all accounts, Wood moved the implementation into high gear. 

O’Shea, the OHHS spokeswoman, said Wood is turning over her responsibilities in developmental disabilities to other officials, including Dianne Curran, a lawyer who is consent decree coordinator, and Kerri Zanchi, the new director of developmental disabilities. They are in touch with the federal court monitor and the U.S. Department of Justice weekly, according to O’Shea.

The consent decree requires the state replace sheltered workshops and segregated day programs with community-based supports so that adults with developmental disabilities may seek regular jobs and enjoy non-work activities in a more integrated way. The desegregation of services for everyone with disabilities was ordered by the U.S. Supreme Court in the Olmstead decision of 1999, which re-affirmed Title II of the Americans With Disabilities Act. 

RI Governor Raimondo Asks for Wage Hikes for Direct Care Workers in FY 2018 Budget

By Gina Macris

Governor Gina Raimondo is asking the General Assembly to approve a total of $11 million for raises for front-line human services workers who provide homecare or who work directly with adults with developmental disabilities.

The proposal was one of the highlights of a budget plan that includes nearly $1.4 billion in human services funding in an overall fiscal package totaling about $9.3 billion for the2018 fiscal year, which begins July 1. The budget was delivered to the General Assembly Thursday, Jan. 19.

“For home and community-based placements to be successful, the state must have a robust provider network and support system, “ Raimondo said in a statement. ” To build this capacity, workers with the right skills must be paid enough to fill those jobs,” she said.

Jonathan Womer, director of the Office of Management and Budget, told reporters at a budget briefing that keeping direct care workers on the job has been “really difficult.”  Workers in equivalent jobs in Massachusetts make about $13.00 an hour.

The added money for wages includes a 5 percent hike for workers who provide direct services to adults with developmental disabilities, or 56 cents an hour, bringing their average hourly pay to $11.74. Homecare workers would see a 7 percent, or 78-cents-an-hour increase, for a new average hourly rate of $11.96

Raimondo also has proposed raising the minimum wage from $9.60 to $10.50 an hour, an increase of 90 cents.

Since July 1, developmental disability and home care workers have been paid an average of $11.18 an hour, according to figures released by State Sen. Louis DiPalma, D-Middletown. In October, DiPalma asked the Governor to include additional raises in her next budget as part of a five-year plan to raise the pay of front-line workers to $15.

Last May, Raimondo proposed pay hikes in apparent response to pressure from the U.S. District Court, which is monitoring implementation of a 2014 consent decree designed to desegregate day services for adults with developmental disabilities.

Judge John J. McConnell, Jr. earlier had ruled that the state did not spend enough money to provide the community-based services required by the consent decree and risked being held in contempt of court if it did not sufficiently fund supported employment programs.

The consent decree runs out in 2024, and McConnell is still holding periodic reviews of the case. The next hearing is Friday, Jan. 27.

To encourage supported employment, the General Assembly added $6.8 million in the current budget for job coaching and related activities, but that performance-based incentive program is just getting off the ground, five months after a court-ordered deadline.

Budget briefing materials released Thursday were silent on whether the program will continue, and state officials were not immediately able to respond to detailed questions.

Service providers have said the incentive program, set up to provide one-time bonuses for staff training, new job placements, and job retention, is a distraction from the fundamental problem that agencies continue to be chronically underfunded.

Raimondo asked the General Assembly for an additional $4.9 million for caseload growth in fiscal 2018. The General Assembly spurned a similar request last year, with the House leadership saying the numbers showed a stable caseload, at about  4,000 clients. 

House Speaker Nicholas Mattiello has said that if and when the caseload increases, the General Assembly will listen.

In the last few months, the independent court monitor in the consent decree case has required the state to identify all young people over the age of 14 who likely will be eligible for adult developmental disability services in the next seven years, but the state has not yet released firm numbers.

In all, Raimondo would add nearly $4.4 million to the bottom line to cover developmental disability spending for the remainder of the current fiscal year and $6 million more in the next budget.

Those increases in developmental disabilities apparently would by offset by cost-shifting to The Department of Human Services, as well as cuts in funding authorizations to individuals who receive developmental disability services.

Raimondo’s budget message suggested that developmental disability officials plan to save about $850,000 in state revenue during the remainder of the current fiscal year and an equal amount in the next one by cutting individual funding authorizations to adults with developmental disabilities to “appropriate resource allocation tiers.”  

In the past few years, such attempted cuts have been routinely contested  -- often successfully -- by service providers and families in time-consuming appeals involving a controversial individual assessment called the Supports Intensity Scale.

All developmental disability services are funded by a combination of federal Medicaid and state revenue at a rate of roughly 1 to 1, and the governor’s request for increases come in spite of increased pressure on overall Medicaid costs.

The current authorized spending level for all developmental disability services is $246,242,419. Raimondo’s supplemental budget would raise that total to $250,626,970 by June 30. The spending limit for Fiscal 2018 would increase yet again to $256,707,760, according to her plan.

Developmental disability services make up more than 60 percent of the total BHDDH budget, which is currently $385,632,555. Raimondo would like an additional $15,457,021 for a total of $401,089,575 to close out the current fiscal year. The bottom line for the next fiscal year would be $394,366,931.

Lack of Resources Underlies Problems with Supports Intensity Scale, Other RI DD Issues

photo by anne peters  

Eileen Vieira and Greg Mroczek both express concerns about the assessment used to determine funding for their adult children with developmental disabilities. 

By Gina Macris

The issue of resources – a scarcity of services and the money to finance them – ran like a thread through a public forum on Rhode Island’s developmental disability system Nov. 9 that brought together families, provider agencies and state officials. 

At the same time, participants applauded the willingness of new roster of state developmental disability officials to listen to their concerns.

Much of the discussion, during the meeting at the Cherry Hill Manor Nursing and Rehab Center in Johnston, concerned an assessment called the Supports Intensity Scale (SIS) that is used to assign individual funding packages to those persons receiving services.

“If there was adequate funding to pay for the needs” identified by the assessment, ”we would have much fewer problems with the SIS,” said Tom Kane, CEO of AccessPoint RI, a service agency.

“There’s not enough money there,” he said.

 Kane and others expressed skepticism about the accuracy of the assessment.

For example, Greg Mroczek said his son and daughter are very similar in their disabilities and needs, and yet they were assigned different funding levels.

“It flies in the face of the accuracy of the tool,” he said.

Eileen Vieira, who has a son with developmental disabilities, said some people who do the assessments “have no clue.”

They are not familiar with the person’s medical conditions or mental health issues or what is happening in the client’s life, she said. She said she did not believe the SIS captured her son’s need for behavioral support.

Heather Mincey, administrator in the Division of Developmental Disabilities, acknowledged that “a lot of times the SIS administrators did not get all of the information” necessary to make an accurate assessment of a person’s needs.

Heather Mincey

On Nov. 6, the Division switched over to a new form of the SIS which Mincey said she believes “will help a lot.” Called the SIS-A, the assessment is designed to capture behavioral and medical needs that were sometimes not apparent in results of the original SIS, according to Mincey. 

Kane said he has “never been a cheerleader for the SIS.”

The developer of the SIS, the American Association on Intellectual and Developmental Disabilities (AAIDD), maintains it differs from other assessments because it focuses not on shortcomings but on the supports an individual needs to be successful at a particular task.

Kane, however, said most family members and professionals in the field of developmental disabilities find it difficult to talk about the issues raised in the questions because “you have to examine what’s wrong” to arrive at the necessary supports.

“It’s a deficit-based tool,” he said.

A representative of AAIDD will visit Rhode Island to explain the SIS-A at an information and training session Nov. 17. (See related article.)

Mincey, meanwhile, encouraged parents to file appeals if they believe the SIS results for their sons or daughters are inaccurate – or if they have problems with a shortage of funds for transportation or other issues.

But Vieira indicated that the appeals are continuous and time-consuming, especially for parents who have full time jobs. “You have to appeal and you have to appeal,” she said. 

Brian Gosselin, Chief Strategy Officer for the Executive Office of Human Services, said developmental disabilities officials will use feedback from appeals of decisions on the SIS, along with experiences trying to solve other problems, to improve the system.

In whittling down a backlog of 224 applications for adult developmental disability services, for example, workers learned that nearly half the submissions did not contain all the required documentation, Gosselin said.  That experience will result in a redesign of the application process, he said.

Carla Russo

An independent court monitor in a federal consent decree mandating expansion of community-based services for adults with developmental disabilities has pressed the state to work through the backlog and identify all individuals aged 14 to 21 who might qualify for services after high school. 

One mother, Carla Russo, said her son left school in the 20013-2014 school year and still does not have adult services. 

Iraida Williams, an employee of the Sherlock Center on Disabilities at Rhode Island College, asked whether the application materials would be available in Spanish. Williams has appeared at several public forums on developmental disability services since April 2015, to ask the state to hire a Spanish-speaking social worker or interpreter who could field questions from non English-speaking families.

“That’s the type of feedback that we need,” Gosselin said.

tracey cunningham

Tracey Cunningham, Chief Employment Specialist at the Division of Disabilities, said 23 service providers have applied for a supported employment incentive program that is gearing up as a result of the consent decree.

Nearly every one of the 23 providers has talked about taking on new clients in the process, Cunningham said, although she didn't expect the program to begin operations until January.

If that many agencies do expand, it would be a significant shift from a system that has been in a holding pattern because of a shortage of funding. 

Cunningham said the Division of Disabilities also wants to hear from families who organize their own supports and might want to purchase supported employment services.

One mother, Mary Beth Cournoyer, said parents, who themselves have jobs, need to cover a certain number of hours of care for their sons and daughters and can’t afford to divert much, if any, funding to job development. 

Cunningham said that “we are looking” at the possibility of providing additional funding for supported employment services rather than requiring individuals to stretch their budgets.

Gosselin, meanwhile, said that state officials will be working with consultants from the National Association of State Directors of Developmental Disabilities Services for the next six months to try to come up with better ways to serve individuals and families and at the same time comply with new Medicaid regulations affecting individuals with developmental disabilities.

All photos by Anne Peters