RI EOHHS Secretary To Temporarily Run BHDDH

Womazetta Jones

Womazetta Jones

By Gina Macris

Rhode Island’s chief health and human services executive, Womazetta Jones, will serve as interim director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) and conduct a “thorough review” of the agency, Governor Daniel McKee announced April 9.

BHDDH has been beset by controversy over the discharge of some long-time patients of Eleanor Slater Hospital who, advocates say, have been left without the support they need in the community.

BHDDH officials have denied the reduction in patients is a cost-cutting measure. The state may have to compensate for tens of millions of dollars of federal Medicaid funding for Eleanor Slater Hospital which it had counted on to balance the BHDDH budget until mid-2019.

Jones will continue her work as Executive Secretary of Health and Human Services while serving at BHDDH, according to McKee spokesman Matt Sheaff. That means she is expected to be hands-on at BHDDH while also overseeing three other agencies: the Departments of Health, Human Services, and Children, Youth and Families.

McKee said in a statement he wants Jones to make recommendations to him “on issues including, but not limited to, departmental policy, operations, staffing and quality standards for patient care.”

Jones is stepping in for A. Kathryn Power, whose resignation McKee announced April 5.

Friday Briefs:

Consent Decree Coordinator Named

  • Aryana Huskey has been named Rhode Island’s next Consent Decree Coordinator. She will work with multiple agencies of state government to present a coordinated response to the U.S. District Court on the state’s compliance efforts with a 2014 Olmstead consent decree.

    Huskey will begin her new role March 29. She comes to the job “with an extensive background in health and human services, with experience in delivering direct services to vulnerable populations in Rhode Island, and a clinical background,” said Secretary Womazetta Jones and Claire Richards, executive counsel to governor, in an email to various state officials.

    Huskey will be a “significant asset to the team in working with the stakeholders involved in the Consent Decree,” Jones and Richards said. No other details were immediately available.

Save The Date - Mon. March 22

  • A virtual public forum hosted by the Rhode Division of Developmental Disabilities will be Monday, March 22, from 3 to 4:30 pm, Advance registration is required with Advocates In Action, which is handling technology and logistics. Participants may register here.

RI Entrepreneur With Autism Competing in FedEx Contest

  • Michael Coyne, owner of Red, White, & Brew Coffeehouse in North Smithfield and a graduate of the business development program of the Rhode Island Developmental Disabilities Council, is competing for a $50,000 grand prize in a nationwide small business contest sponsored by FedEx. Your vote will help get Michael to the next level!

    He is featured in an article in RI News Today, which also includes a link for voting.

Federal Judge Asks RI For Quick Action To Increase DD Funding And Avoid Court Order

John J. McConnell , Jr.

John J. McConnell , Jr.

By Gina Macris

Chief Judge John J. McConnell, Jr. has made it clear he is prepared to use the power of the U.S. District Court, if necessary, to ensure the state of Rhode Island provides adequate funding for adults with development disabilities.

That population of about 4000 people is protected by a 2014 civil rights agreement set to expire in 2024, assuming the Court approves.

Time is already drawing short for the state to make the changes necessary to achieve compliance by the 2024 deadline. The process would require approval by the General Assembly and would have to be running smoothly for a year before the state is released from federal oversight.

But the COVID-19 pandemic has added urgency to the situation, because the state’s compliance depends on some three dozen private service providers that are in such shaky ground financially that they won’t survive the next six months without extra cash.

That was the picture presented to McConnell at a hastily-called virtual court hearing on Zoom Nov. 24.

McConnell gave state officials and advocates until Dec. 18 to figure out a solution to providers’ short-range fiscal problems.

McConnell said he saw “two levels of crisis:”

  • an immediate one that threatens the viability of social services for adults with developmental disabilities over the next six months, with conditions changing “second by second, moment by moment, and day by day.”

  • a system-wide crisis around the state’s ability to meet the requirements of the 2014 consent decree.

Since last summer, the state has been engaged in a court-ordered planning effort to devise solutions to the systemic issues and present McConnell with a long-range implementation plan by June, 2021.

But the judge said he called Tuesday’s hearing in response to a preliminary fiscal report from an independent monitor, who said the burdens of coping with the coronavirus pandemic posed more immediate threats to service providers.

Cooperative Solution Preferred

McConnell asked the monitor, A. Anthony Antosh, to convene a “collaborative” public-private group to come up with an immediate funding solution by December 18. The collaboration should include state officials, lawyers for the U.S. Department of Justice, and representatives of the community, including the head of a provider trade association, Tina Spears, McConnell said.

Lawyers for the state, including Kathleen Hilton and Marc DeSisto, framed it as a continuation of an active collaboration that already has resulted in one hazard pay initiative.

McConnell said he much preferred a solution devised by the state and its partners in the community, rather than having to resort to a court order.

But he made it clear that one way or another, he considers it his responsibility, as a judge in the “third and co-equal branch of government,” to protect the population with intellectual and developmental disabilities in Rhode Island.

“The advisable way is for the good and smart people to sign off and figure out how to do it,” the judge said.

After hearing from budget director Jonathan Womer, health and human services secretary Womazetta Jones, and other state officials, McConnell said “there is no doubt we have an awesome team in the executive branch whose hearts and minds and souls are in the right place.”

McConnell acknowledged that “quite a bit of money” ($20 million) has been allocated to developmental disabilities during the pandemic, but he said “it has become inadequate as the system currently exists.”

The state “may have fiscal handcuffs on,” as Womer, the budget director, explained, but “for the Court, it’s of no import where the money comes from.”

The state and “all its entities” are part of a consent decree that enforces the civil rights of adults with developmental disabilities under the Americans with Disabilities Act, McConnell said.

“But make no mistake,” he said. If necessary, “the Court will use all its powers to order the state and all its entities to come up with the money,” he said.

Effects Of Pandemic “Unrelenting”

The trade association representative, Tina Spears, director of the Community Provider Network of Rhode Island, (CPNRI) illustrated the current problem in human terms.

In the first three weeks of November, a single provider agency experienced COVID- 19 infections in four of its 18 group homes. Sixteen staff members and eight group home residents tested positive, with four residents requiring hospitalization. Three staffers had to quarantine at home, and one staff member died, Spears said.

Meanwhile, the agency’s day programming, which included expansive work-related supports and other services, is running at 30 percent capacity, she said, running into debt at an exponential rate.

“The situation on the ground is unrelenting,” she said.

Kayleigh Fischer, Director of Budget and Finance for EOHHS, laid out the various federal initiatives, totaling $20 million, that have helped service providers stay afloat during 2020.

And Womer, the budget director, explained the fiscal challenges posed by COVID-19, which has decimated revenue and has saddled the state with a projected budget deficit of $250 million to $275 million by the end of the fiscal year in June, depending on who’s counting.

“It’s confusing. There are a lot of moving pieces and a lot of federal guidance that’s constantly changing,” he said.

“We have more restrictions on spending now because of the pandemic,” Womer said. “We are reducing spending anywhere we can to contain the deficit,” he said.

The state can spend federal grant money like the $1.6 billion allocated to Rhode Island for coronavirus relief, Womer said, but among the exclusions are spending for workforce bonuses, as well as replacing state revenue in the federal-state match for the Medicaid program.

Medicaid is the program that funds the developmental disability service workforce.

Spears Highlights Below-Market Funding

Spears acknowledged that without the emergency funding the state has allocated so far, the developmental disability service system already would have folded.

She said she appreciates the fiscal challenges Womer described, but “this has been the rationale for underfunding our workforce for the last decade.“

In 2011, the state deliberately set reimbursement rates for private providers of developmental disability services below market costs, Spears said. “This fact cannot be overstated,” she said.

The rate-cutting, which resulted in layoffs and sharp wage reductions, has been documented in an exhaustive $1.1 million study commissioned by the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, (BHDDH), and by a separate special legislative commission.

Over time, Spears said, the flawed fiscal foundation of the reimbursement model has made it increasingly difficult for providers to recruit and retain qualified workers, a situation that has only been exacerbated by the pandemic.

Today’s average pay for direct care workers is $13.18 an hour, but provider agencies say they must pay $25 to $30 an hour to get workers to go into COVID-positive group homes or homes where residents are in quarantine, according to Antosh, the court monitor.

Antosh has proposed the state deploy $2 million a month from unused developmental disability funding to boost the pay of direct care workers to $20 an hour and cover other expenses related to COVID-19.

Separate from Antosh’s proposal, Spears said, CPNRI has asked Governor Gina Raimondo for COVID Cares Act relief funding for incentive pay for workers in coronavirus-positive group homes and for emergency relocation funds. These funds would be used for temporary quarters to make sure that COVID-negative group home residents can be separated from housemates who are infected.

She did not provide additional detail on that pandemic-related funding request.

Instead she focused her remarks during the hearing on separate recommendations for addressing the structural problems in the fee-for-service reimbursement model.

The state should raise entry-level wages to $17.50 an hour immediately, with a boost to $20 an hour in the fiscal year beginning next July 1, she said. Spears said the state has received an increase in the federal share of the federal-state Medicaid program which has not been passed along to service providers.

In addition, there should be an expedited, yet comprehensive, review of the rate structure that includes the cost of implementing policies mandated by the 2014 consent decree, Spears said. The current rate structure does not support the agreement, she said. She said changes in the rate structure should be ready to be incorporated in the budget that begins next July 1.

The DOJ has found that the overhaul of the developmental disability service system adopted in 2011 incentivized segregated care, in violation of the Integration mandate of the Americans With Disabilities Act.

During the court hearing, Womazetta Jones, the Health and Human Services Secretary, said she wants to work with service providers to do what is feasible and equitable, given all the needs of vulnerable populations.

McConnell replied to Jones:

“As a citizen, I have long admired your service,” he said.

But he pointed out that Rhode Islanders with developmental disabilities have a protection that other vulnerable populations do not.

The DOJ found, and the state agreed, that those with developmental disabilities have experienced violations of their constitutional rights “that can’t continue,” the judge said.

“I don’t want to disagree with anything, but I want to focus on why we are here,” McConnell said.

RI Faces Uphill Climb Halfway Through DD Consent Decree Implementation

Bar graph on employment targets 60-30-19.JPG

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.

state's employment chart as of 6-30-19.JPG

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

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

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

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

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.