ACLU and DRRI Urge RI TO Shift Funding For Children's Mental Health

By Gina Macris

Disability Rights Rhode Island (DRRI) and the American Civil Liberties Union of Rhode Island (ACLU) made an urgent plea May 24 to the House leadership to shift its focus on residential treatment for acute children’s behavioral health issues to “robust funding” for comprehensive community-based services accessible at home and at school.

The letter to Joseph Sheckarchi, Speaker of the House; Majority Leader Christopher Blazejewski, and Finance Committee Chairman Marvin Abney, comes on the heels of federal findings that the state harms children in prolonged institutional care, - and in the midst of the General Assembly’s final negotiations on the upcoming state budget.

The timing gives the General Assembly an opportunity for “righting the current course and establishing a long-term solution for children rather than continuing on its apparent present course of spending tens of millions of dollars on residential treatment facilities,” wrote Morna Murray, executive director of DDRI; and Steve Brown, executive director of the ACLU.

They said the cost of residential settings is “astronomical” compared to the costs of serving children in the community.

According to the federal findings released last week, the state spent more than $13.6 million in Medicaid dollars on psychiatric hospitalization of children in state care between July 1, 2020 and June 30, 2021 and nearly $27 million for children’s residential treatment during the same period – some of it out of state.

In-state residential treatment can cost as much as $990 a day, while therapeutic foster care may cost $48 to $125 a day, U.S. Attorney Zachary Cunha said in a complaint alleging the state for years has violated the civil rights of children with behavioral health issues.

Meanwhile, the state budget proposal that would take effect in about five weeks – on July 1 - contains $11 million to expand the troubled St. Mary’s Home in North Providence, even though the state’s child welfare agency is pulling children out of that facility.

In addition, the state is planning to spend $45 million over the next three years to build an intensive residential treatment facility for girls in Exeter, on the site of the former Ladd School, which once housed people with intellectual and developmental disabilities.

Last week’s DOJ findings warned about the harmful effects of long-term hospitalization and institutional care on children. It serves as a “wake-up call” that the state “cannot build its way out of its obligations to care for vulnerable youth in the state,” said Brown in a statement.

“This long-standing issue harms the most vulnerable children and represents a violation of their legal rights,” said Murray in the same statement. “The time has come for the state to comprehensively correct this injustice,” she said.

Quoting the U.S. Attorney, Murray and Brown said in the letter that “it’s not an issue of not enough beds.”

Study after study has shown that children treated during long stays in hospitals and psychiatric residential facilities, like St. Mary’s Home for Children, experience physical and emotional abuse, over-medication, trauma and rehospitalization at higher rates, with their long-term success in life diminished, the letter said.

Brown and Murray asked the House leadership to take the DOJ findings to heart and to re-direct into the community the funding which put more children in residential treatment facilities “that cannot solve the problem.”

Companion bills sponsored by Sen. Louis DiPalma, chairman of the Senate Finance Committee, and Rep. Tina Spears, D-Charlestown, Westerly, South Kingstown and New Shoreham, would require the General Assembly to fully fund rate increases for a broad array of home and community services as recommended by the Office of the Health Commissioner (OHIC) every two years.

The governor’s budget would spread out existing OHIC recommendations over the next three years, with $22.1 million proposed for the next fiscal year.

Future rate reviews would be conducted once every four years for each of four categories for community services, according to a budget amendment the governor submitted to the General Assembly in April.

Developmental Disability News asked spokespersons for both the governor and the House leadership on May 23 – a day before the DRRI and ACLU letter - whether the DOJ complaint will affect budget talks about the OHIC-recommended increases for the next fiscal year, but there has been no immediate response from either.

May 23 was the deadline for the state to respond to the DOJ complaint, which alleged that the state violated the Integration Mandate of the Americans With Disabilities Act (ADA) by “warehousing” children with behavioral problems at Bradley Hospital, the state’s only children’s psychiatric hospital.

DCYF director Ashley Deckert wrote to Assistant U.S, Attorney Amy Romero May 22, saying “we look forward to working cooperatively with the U.S. Attorney’s Office and HHS (the Department of Health and Human Services) to address the findings.”

Deckert said she will call Romero “shortly to establish a framework for our collaboration going forward” to find a “mutually agreeable strategy to address what we believe are nationwide mental health staffing challenges.”

RI “Not Far” From Institutional System Of DD Services, Antosh Tells Legislative Commission

A. Anthony Antosh

By Gina Macris

Other than moving people out of institutional living with the closing of the Ladd School in 1994, Rhode Island hasn’t made life appreciably better for adults with developmental disabilities, according to state’s most prominent academic in the field.

A. Anthony Antosh, director of the Sherlock Center on Disabilities at Rhode Island College, said that every week he gets calls from parents who say how “complicated it has gotten” to deal with state-funded services and “how unstable the system is.”

“Our system is not institutional, but it’s not far from that,” Antosh said. He has been active as an educator and researcher in the field of developmental disabilities since the 1970s and was a plaintiff in a lawsuit that ultimately closed the Ladd School.

If the state transfers control of its services – even partially -- to the people who are served, “you begin to change what the system looks like,” he said. Individuals will become “more responsible for themselves.”

Antosh made the comments May 22 as a member of the Project Sustainability Commission, a special legislative commission studying the current state of developmental disability services. Antosh and other commissioners outlined their reform suggestions at the session.

He zeroed in on a requirement now in place that sets out ratios for staffing according to the degree to which a person is perceived to be disabled – a “naive notion” in his view. The ratios allow one-to-one or small group staffing only for the most challenged individuals and were designed for day care facilities or sheltered workshops.

The funding rule remains in place even though the state in April entered the sixth year of a ten-year agreement with the U.S. Department of Justice requiring it to change to an integrated, community-based system of care. The last sheltered workshop in Rhode Island closed last year.

Antosh said an alternative structure could be a community support team responsible for a certain number of people. The team would figure out how to arrange its time to meet the individual needs of its clients in the community.

DD Council Weighs In

Kevin Nerney, executive director of the Rhode Island Developmental Disabilities Council, also said that he wanted a system “driven by the person and the family.”

There is much talk about “person-centered planning,” he said, but “sometimes, the person is at the center and the other people are doing the planning.”

Nerney recommended that the person receiving services and the family take the lead in drawing up a plan for life in the community. They would be guided by an independent facilitator, not by someone who works for the state funding agency or a private service provider.

The individual and the family would have control over the budget assigned to them and would be able to hire whom they choose to provide paid supports.

Until recently, Nerney said, individuals and families who direct their own services were allowed to use the money allotted to them only to pay for support workers.

Those who choose to receive services from an agency should at least know how much money goes into each category of support, Nerney said.

Antosh, meanwhile, said that funding should be organized by function so that individuals and families have a clearer idea of its purpose.

The notion that plan-making and case management should be separated from the funding agency and the service provider is already embedded in federal Medicaid rules under the title of “conflict free case management.”

“Health Home” Merits Debated

The state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) wants to set up a Medicaid-funded “Health Home” as an independent planning and case management entity for persons with developmental disabilities.

But some commission members have wondered aloud whether a Health Home would be just another layer of bureaucracy.

And Nerney said most people don’t even like the term “conflict-free case management.”

Antosh agreed that “conflict-free case management” should be made simple. The state should have a list of trained independent facilitators, or “navigators,” as he referred to them, to help individuals and families develop plans and mediate any differences among those contributing to an individual plan.

Individuals and families should have a choice of managing their own services, signing up with an agency, or designing a customized combination of self-directed supports and agency-managed services, he said.

Tom Kane, Left, With Antosh

Tom Kane, who represented a service provider’s perspective, agreed that the people should be in control, with the services following their needs.

To lay the groundwork for real choice, the system should help adults with developmental disabilities “discover their options,” and providers should follow their lead in delivering services, said Kane, CEO of AccessPoint RI.

Kane recommended a concerted statewide marketing campaign aimed at employers that promotes adults with developmental disabilities as an enthusiastic and reliable workforce.

Several other recommendations from Kane echoed recurring issues among members of the commission including:

• A need for funding that reflects the real costs of services, as well as salaries that will attract and retain talented employees. Recommendations that arise from the review of the funding model and rates that is now underway should be presented to the General Assembly “without edit,” Kane said, and should be used as the basis of funding a new system. He noted that the last review came up with recommendations which the legislature never used.

• Concerns about a lack of housing options

• A need for consumers’ access to technology to help them achieve the greatest independence possible.

A Call For A More Stable Funding Cycle

All the commission members, except Antosh, favor annualized budgets for individuals. Antosh said arrangements should be made in two-year increments for funding and services. He also said that there should be a single streamlined application process, no matter the source of the funding, which may come from BHDDH, the Office of Rehabilitative Services, or the Department of Labor and Training.

Families of youngsters deemed eligible for adult services while they are still in high school should also get a budget for exploratory activities, because they don’t know what choices are possible until they experience various options, he said.

The state now determines funding levels annually on paper but reserves the right to change the amount actually released for spending every three months – on a quarterly basis. Families and providers agree that the quarterly allocation - the only one like it in the nation – is a major impediment to the systematic planning necessary for a stable system of supports.

Kane provided some history on the quarterly allocations:

In 2010, he said, payments to private service providers ran over budget and the state told them their reimbursements would be cut for two months – one month retroactively – to make up the difference.

Some providers sued, Kane said, arguing that the state was still obliged to fulfill its contract with them. The providers won, but the next year, in 2011, BHDDH introduced quarterly allocations along with Project Sustainability, the fee-for-service system that significantly reduced reimbursements and is at the center of the commission’s deliberations.

Mental Health Services Lag

The issue of mental health received considerable attention, with Nerney recommending that the system develop and implement a variety of strategies to prevent crises or resolve them once they occur.

Nerney supported the idea of a mobile crisis unit that he said was suggested by Gloria Quinn, Executive Director of West Bay Residential Services, at the previous commission meeting May 6.

Quinn recommended convening a group to explore successful practices in supporting those with complex mental health and behavioral needs in the community, minimizing the need for excessive psychiatric hospitalization.

Rebecca Boss, the BHDDH executive director, and Kerri Zanchi, the Director of the Division of Developmental Disabilities, both indicated they are aware of a need for greater support and intervention in the area of behavioral health for persons with developmental disabilities.

“We don’t have a good handle on the needs of families in crisis,” Zanchi said.

The assessment tool that BHDDH uses to determine funding levels, the Supports Intensity Scale (SIS), garnered a new round of criticism, despite efforts in 2016 to reframe the questions it asks to better identify support needs and the re-training of all the social workers who conduct the highly scripted interviews..

L To R, Kerri ZanCHI, Brian Gosselin, Acting Consent Decree Coordinator; Christopher Semonelli, Peter Quattromani. All Are Commission Members

Critic Says Assessment Method Is “Demeaning”

Peter Quattromani, executive director of United Cerebral Palsy RI and spokesman for the Providers Council, said the state should return to using the Personal Capacity Inventory to identify funding needs because it reflects a more collaborative approach than the SIS.

Quattromani said he sat in on several SIS interviews and found the SIS to be a “very demeaning experience” with “very intrusive questions.” In some cases the interview varied, depending on who was asking the questions, he said.

Antosh said when parents experience the SIS for the first time, “they are absolutely horrified by it.”

He suggested that when the SIS was first piloted, it was not intrusive. It was “a conversation”, albeit a lengthy one, lasting for or five hours, Antosh said. Afterward the responses were correlated with funding needs.

Antosh said the SIS was designed to help professionals develop support plans, not as a funding tool, even though Rhode Island and other states use it that way.

Antosh said he would recommend that Rhode Island design its own assessment tool, not necessarily eliminating the SIS but using multiple factors to determine funding, including an exploration of behavioral health issues and other areas not covered in the SIS.

Heather Mincey, assistant director of the Division of Developmental Disabilities, said not all the comments abut the SIS process she has received from families have been negative, with some parents saying it “wasn’t all that bad.”

The May 22 meeting concluded individual members’ presentations on recommendations for change, which will be reviewed and consolidated along common themes and incorporated into a plan for moving forward, said the Commission chairman, Sen. Louis DiPalma, D-Middletown.

He said he anticipated a five-year process for implementation, with the aim of making Rhode Island achieve top national ranking among state systems of developmental disability services.

In the meantime, DiPalma said that he next commission meeting, on June 18, will feature remarks by the state Director of Labor and Training, Scott R. Jensen; and the CEO of the Rhode Island Public Transit Authority, Scott Avedesian Employment and transportation are two topics that have sparked a lot of complaints, DiPalma said. He said he expects the commission to continue meeting into July.