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

A. Anthony Antosh

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, 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

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.

RI DD Advocates Warn Of 'Massive Retrenchment' From Proposed $21.4 Million Spending Reduction

                                                                                                                                                                                                                                                                           All Photos by Anne Peters

                                                                                                                                                                                                                                                                           All Photos by Anne Peters

Donna Martin, executive director of the Community Provider Network of Rhode Island,  speaks during the Day Of Action, sponsored by the provider network. Standing, l to r, are Rep. Deborah Ruggiero, (D-Jamestown and Middletown); Rep. Dennis M. Canario, (D-Portsmouth, Little Compton and Tiverton), and Rep. Teresa A. Tanzi, (D-Narragansett and South Kingstown.  Seated on the steps below the State House Rotunda are advocates representing the service provider Spurwink RI. 

By Gina Macris

Rhode Island would see a “massive retrenchment” in services for adults with developmental disabilities if Governor Gina Raimondo’s proposed budget is enacted for the next fiscal year, a spokeswoman for providers told members of the House Finance Committee at a hearing March 29.

Pam Goes 

Pam Goes 

In human terms, Raimondo’s plan to cut $21.4 million from current spending levels would diminish the quality of life for some 4,000 individuals whose care is already undercut by low wages and high turnover among caregivers, said Pam Goes of Warwick, who has two sons with developmental disabilities, including one who cannot express his needs verbally. 

Goes delivered the same message at a “Day of Action” in commemoration of March as Developmental Disability Awareness Month under the State House Rotunda in mid-afternoon as scores of adults with disabilities and their supporters lined the steps leading to the House and Senate.  

State Sen. Louis DiPalma, D-Middletown, told the crowd that “people with developmental disabilities have the ability to lead a full and prosperous life. That’s why I’m here.'

Rep. Teresa Tanzi, D-Narraganset and South Kingstown, said that for the compassionate work they do, the wages of direct care workers are an “injustice.”

Tanzi, who chairs the Human Services Subcommitte of the House Finance Committee, presided over the budget hearing later in the afternoon.

Of the overall $21.4 million reduction from current spending levels in the next fiscal year, $18.4 million would come from private the agencies that provide most of the services and $3 million would be taken from a state-operated system of group homes.

Martin, executive director of the Community Provider Network of Rhode Island (CPNRI), did not mince words when she addressed Tanzi and other members of the House Finance Subcommittee.

She said “there is no way” that service providers will be able continue efforts to comply with new federal Medicaid regulations requiring integrated, community-based services and a 2014 federal consent decree that focuses on competitive employment for adults with developmental disabilities.

Needed Changes Are "Not Going To Happen" 

Compliance with the 2014 consent decree and the new Medicaid regulations, called the Home and Community Based Final Rule, depends on system-wide changes in the manner of care, and “that’s not going to happen” with an $18 million cut to private service providers, Martin said.

Instead, there will be a “tremendous reduction” in services, she said, with agencies forced to prioritize the health and safety individuals in their care. Employment –related services and the services necessary to provide community integration will suffer if the agencies must absorb an $18 million, Martin said. Workers’ hours and wages – which hover slightly above minimum wage – would be cut.

David Reiss, CEO of the Fogarty Center, the largest non-profit service provider in the state, said the agency simply cannot survive if the state imposes the $18.4 million reduction across the board. It represents about a 7 percent cut in spending. 

Reiss said he has closed five group homes in the past year, not because of a lack of demand but because he couldn’t find enough workers to staff them. Staff turnover is about 40 percent, he said. 

The starting wage at the Fogarty Center is $10.50 an hour, he said. Although the General Assembly has raised the pay for direct care workers slightly in the past two years, the minimum wage also has increased. It is now $10.10 and is scheduled to go up again next January to $10.50 an hour. Massachusetts has an $11.00 minimum wage and has agreed to pay direct care workers a minimum of $15 an hour beginning in July.

Raimondo’s budget includes no money for raising the wages of direct care workers this year, although a bill in the legislature would link increases in the minimum wage to raises for front-line staff, according to Martin, the CPNRI director.

High Staff Turnover Worries Parents

Pam Goes, the Warwick mother, discussed the impact of the high staff turnover on her non-verbal son.

“We feel like we are constantly starting over,” she said. Her son Paul needs to trust his caregiver, and that trust comes only with time and continuity of high quality care.

“It’s a difficult job for them to be on top of his moods ,” she said. “You need to get to know him,” she said. Paul will often test new staff to see how much he can get away with, she said, and he can become aggressive.

“I worry that there are so many people in and out of his life,” she said. “I worry that his communication is so limited. I especially worry about what happens when I’m gone,” she said.

“I want to advocate for a sustainable system where people live a good life,” she said. “It’s a lot of stress knowing the situation could become more untenable.”

About four thousand people receive services, she said, and “every family has a story like mine.”

Tom Kane, the CEO of AccessPoint Rhode Island, said Goes reminded him of the best compliment his agency ever received: “The work you did for our son allowed us to be the family we wanted to be."

A Call For More Funding

The budget is “about priorities. It’s about morality, and it’s about people” he said. “It should be about people.”

Kane called on the legislators to approve a proposed $15.3 million budget increase to cover cost overruns in the current fiscal year, as Raimondo has proposed, and then to add another $15 million in the budget cycle beginning July 1 to deal with a structural deficit and allow some growth.

Raimondo’s budget proposal does not acknowledge the structural deficit, he said. Instead her plan only temporarily grants additional funding, only to take it away in the next fiscal year.

The General Assembly approved total spending of $256.9 million for the current fiscal year. Raiimondo’s proposal would increase that figure to to $272.2 million. But in the fiscal year beginning July 1, her bottom line would drop to  $250.8 million. That figure is  $6.1 million less than the enacted budget and $21.4 million less than the temporary budget expansion Raimondo has proposed through June 30.

Kane presented figures which showed Rhode Island spends significantly less on adults with developmental disabilities than neighboring Massachusetts and Rhode Island.

The State of the States in Developmental Disabilities, a research project sponsored by the University of Colorado, tracks residential costs for adults with intellectual challenges. In 2015, the latest year for which data is available, the national average for residents of institutions with 16 or more beds was $256, 400 per person.

  • Massachusetts spent $287,434 per person
  • Connecticut spent $403,496
  • Rhode Island spent nothing in that category. All those who would be in institutions in Massachusetts or Connecticut live in group homes in Rhode Island, Kane pointed out.

The average cost for group homes with six or fewer residents nationwide was $129,233 in 2015, according to the State of the States.

  • Massachusetts spent $170,682 per person
  • Connecticut spent $172,067 per person
  • Rhode Island spent $114,973 per person                                       

Kane said the average per-person cost in Rhode Island is skewed upward by the state-operated system of group homes. According to the House Fiscal Office, the average per-capita cost for 139 residents of the state operated system is $207,251.

In the privately-operated group homes, however, the state spends about $60,000 a year per person, Kane said. Roughly 1200 individuals live in houses run by private agencies like Access Point RI  and the Fogarty Center.

Controversy Continues over Assessment

Kane turned to a discussion of the Supports Intensity Scale, a controversial assessment methodology that uses lengthy interviews to determine the level of services needed by persons with developmental disabilities on a case-by-case basis. It was introduced in 2011, ostensibly to correct “special considerations” for individual clients that state officials said posed a problem because they were driving up costs, Kane said. 

Ironically, he said, the assessment has prompted many more appeals of individual funding than the number of “special considerations” that had been granted previously.

Some people see the assessment as a problem since it was revised in November, 2016, because it has it has led to larger awards, Kane said.  A House fiscal analysis says the new assessment has added $17 million to developmental disability costs in the first 12 months it was used. 

Kane said service providers believe that the results of the original assessment were “manipulated to back into a budget that didn’t accurately reflect the needs of people.”  

The revised assessment, the Supports Intensity Scale – A, is being used “far more appropriately now,” he said.

The House Fiscal Advisor, Linda Haley, noted a “moratorium” in the use of the SIS-A. The director of the agency responsible for developmental disabilities, Rebecca Boss, explained that it was temporary, to allow officials to review their implementation of the revised assessment. 

A total of 46 errors in funding were corrected (see related article) and the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals continues to use the assessment for new entrants and for regularly-scheduled re-evaluations of clients. Boss said.

If an appeal includes documentation of changes in a person’s medical or behavioral needs that are likely to be long term, perhaps as part of the aging process, a client will receive a re-assessment with the SIS-A ahead of schedule, added Kerri Zanchi, Director of the Division of Developmental Disabilities.

Kevin Nerney, a spokesman for the Rhode Island Developmental Disabilities Council, discussed several initiatives that are intended to both improve services in compliance with federal law and cut costs over the long term.

But Rhode Island is not there yet, he said.

“We don’t want to destroy one system (of services) before creating a new one,” Nerney said. “We don’t want to leave people behind based on an arbitrary fiscal goal rather than the needs of people.”

He said he knows that some eligible individuals are unable to find services that fit their needs, alluding to an increase in the number of individuals who are receiving only case management  during the last couple of years. That figure jumped from 451 in 2016 to 643 this year.

“On paper, it may look like savings” for the state, Nerney said, but some of those families “are in crisis.”

 

New RI Family Advocacy Group To Launch Nov. 1; Organizers Seek Comment On Legislative Priorities

By Gina Macris

What are the top concerns for Rhode Island families who support one of their own in dealing with the challenges of developmental disabilities?  How do family members think they can have an impact on the next session of the General Assembly?

Those are the overarching questions that will occupy twin “Coffee and Cafe Conversation“ events  in Providence and Newport  on Wednesday, Nov. 1, to launch Rhode Island FORCE (Families Organized for Change, Reform and Empowerment.)

The fledgling organization aims to fill a void in grass roots advocacy during the last several years, when the legislature slashed Medicaid funding for developmental disability services, amid assurances from the executive branch that private agencies could provide the same service for less money.  The U.S. Department of Justice subsequently found the state’s over reliance on sheltered workshops violated the Americans With Disabilities Act.

The U.S. District Court now oversees reform efforts of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, which has had a complete turnover in management. However, there is still no broad-based family voice in the public policy discussion surrounding changes to the service system – and how to pay for these reforms.  

The work of the court and of reform-minded professionals in the field of developmental disabilities cannot replace family advocacy efforts, said Ken Renaud, a consultant who will facilitate the discussions at “Coffee and Cafe Conversation,” in the morning in Providence and the late afternoon in Newport.

“We can’t expect other people to do this,” he said. Renaud himself has a family member with developmental disabilities.

The conversation about strategic priorities began several months ago with a small leadership group of parents and other family members who now want to reach out to others to build consensus,  Renaud said.

While the group has start-up support from the Rhode Island Developmental Disabilities Council, the advance publicity for “Coffee and Cafe Conversation” stresses the independence of Rhode Island FORCE from any state agency or community organization.  

Renaud said that he will ask those who attend to relay their experiences with the developmental disability system and a series of other questions that will build up to a vote on the top three issues they wish to tackle through advocacy. The sessions will be recorded to provide the leadership group with documentation for follow-up activities, he said.

Renaud emphasized that the sessions are “not for providers” of developmental disability services.

“A lot of people who might have a family member also work in a professional capacity” in the field,  he said. “When they walk in the room, we want them to have their ‘family member’ hat on,” he said.

On November 1, Coffee and Cafe Conversation will be from 10 a.m. to noon at the Roger Williams Park Casino, 1000 Elmwood Avenue, Providence, and from 5:30 to 7:30 at the Newport Public Library, 300 Spring St., Newport. For more information, contact Kevin Nerney at the Rhode Island Developmental Disabilities Council, kevinnerney@riddc.org or at 401-737-1238.

Each state has a developmental disabilities council, empowered by the Developmentally Disabled and Bill of Rights Act enacted by Congress in 1975 to help individuals live inclusive lives. The councils' mandate is broader than family advocacy. Rhode Island’s 24 council members are appointed by the Governor. 

Roger Williams Park Casino:

 

Newport Public Library:

 

RI DD Public Forum Highlights Personal Choice, Inclusive Initiatives For Redesigning Services

Deanne Gagne                                                                                                                                                                                                                                           all photos by anne peters

Deanne Gagne                                                                                                                                                                                                                                           all photos by anne peters

By Gina Macris

During a public forum on Rhode Island’s developmental disability services Aug. 8, Deanne Gagne talked about the importance of personal choice in improving quality of life, for herself and others. 

“It’s really about the person in the center who’s driving the vehicle,” not the service system defining the options, said Gagne, a spokeswoman for Advocates in Action, a non-profit educational organization which encourages adults with developmental disabilities to speak up for themselves.

For Gagne on that day, personal choice turned out to be about the spontaneity of doing somethingmost adults take for granted: making a lunch date.

After the meeting, Gagne connected with an old friend who also attended the forum at the Coventry Community Center.

Because Gagne controls the way she uses her service dollars, she did not need to discuss with anyone how she and her wheelchair would get to and from the chosen restaurant.  Gagne’s assistant simply pulled Gagne’s cell phone out of the bag that hangs across the back of her chair and handed it to Gagne, who marked the date, time and place in her calendar and handed back the phone. That was that.

As a speaker during the forum, Gagne summarized the message of recent public sessions hosted by  Advocates in Action, in collaboration with the state and the Sherlock Center on Disabilities at Rhode Island College, on thinking “outside the system” or “outside the box” in planning for the future.

“It’s back to basics,” she said. “What do you want to do with your life, and what do you need to make that happen?”

Both a 2014 consent decree and a new Medicaid rule on Home and Community Based Services (HCBS) put personal choice at the heart of mandated changes in the approach to services. All developmental disability services in Rhode Island are funded by the federal-state Medicaid program.

One parent who has attended a recent Advocates In Action session on personal choice, or “person-centered thinking”, said there’s a long way to go before such a change becomes everyday reality.


“It seems like a giant step to get from where we are now to where we’re going,” said Greg Mroczek, who has two adult children with developmental disabilities.

None of the developmental disability officials who hosted the forum disagreed with him.

Zanchi           

Zanchi           

But Kerri Zanchi, the director of the Division of Developmental Disabilities, and her administrative team made it clear that they want the public to participate in creating a new system of services in a much more active way than is the norm when bureaucracies adopt change.

Kevin Savage, director of licensing, who leads a continuing effort to rewrite developmental disability regulations, said, “We want to have regulations that are meaningful to participants and their families.” The committee rewriting the regulations, which began working in the spring, includes representation from consumers and family members. Savage said a draft of the proposed regulations should be completed in September and released for public comment later in the fall.

Also on Aug. 8, the Division put out a new call for individuals interested in serving on an external quality improvement advisory council.

The advisory council would complement an internal quality improvement committee as part of a broad effort intended to make sure services are faithful to the requirements of the consent decree and Medicaid’s Home and Community Based Rule. 

Anne LeClerc, Associate Director of Program Performance, said she would field inquiries about the quality improvement advisory council. She may be reached at 401-462-0192 or Anne.LeClerc@bhddh.ri.gov.

Zanchi, meanwhile, yielded the floor to representatives of a fledgling effort to revitalize family advocacy called Rhode Island FORCE (Families Organized for Reform, Change and Empowerment), an initiative of the Rhode Island Developmental Disabilities Council.

Semonelli

Semonelli

Chris Semonelli of Middletown, a leader of the group, said it aims to become a springboard for legislative advocacy, starting with an exchange of ideas in the fall among those affected by the developmental disability service system. A date for the event, entitled “Coffee and Cafe Conversation,” has yet to be announced.

The Developmental Disabilities Council plans to support the family advocacy group for up to five years, until it can spin off on its own, according to Kevin Nerney, a council spokesman. Anyone seeking more information may contact him at kevinnerney@riddcouncil.org or 401-737-1238.

Francoise Porch, who has a daughter with developmental disabilities, touched on a long-standing problem affecting both the quality and quantity of available services: depressed wages.

“Direct care staff can’t make a living working with our children,” she said.

The General Assembly allocated $6.1 million for wage increases in the budget for the current fiscal year, which Governor Gina Raimondo signed into law Aug. 3 after the House and the Senate resolved an impasse over Speaker Nicholas Mattiello’s car tax relief plan, which emerged intact.

Although the language of the budget says the raises are effective July 1, the fiscal analyst for developmental disabilities, Adam Brusseau, could not say during the forum exactly when workers might see retroactive checks.

The extra funding is expected to add an average of about 56 cents an hour to paychecks – before taxes – but the precise amount will vary, depending on the employee benefits offered by private agencies under contract with the state to provide direct services.

The latest raise marks the second consecutive budget increase for direct care workers and the first in a five-year drive to hike salaries to $15 an hour.

For high school special education students anticipating a shift to adult services, “there seems to be a logjam” when it comes to families trying to figure out how many service dollars they will have and how far the money will go, according to Claire Rosenbaum, Adult Services Coordinator at the Sherlock Center on Disabilities at Rhode Island College.

Rosenbaum

Rosenbaum

Zanchi said the Division of Developmental Disabilities aims to administer assessments that are used in determining individual budgets a year before an applicant leaves high school and needs adult services.  But Rosenbaum said that based on her contact with families of young adults, a year does not appear to be long enough. 

She elaborated: after the assessment, called the Supports Intensity Scale, families must wait a month or more for the results. Only then can parents explore the offerings of various agencies.  They may settle on one agency, only to be told that the agency is not accepting new clients with their son or daughter’s particular need. Then, when families decide to design an individualized program themselves, they must begin planning all over again.

“A year is not enough,” Rosenbaum said.

Zanchi said she will look into the problem.

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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

By Gina Macris

This article has been updated.*

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

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

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

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

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

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

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

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

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

SIS Has History of Controversy in RI

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

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

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

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

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

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

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

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

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

Consent Decree Allows Exceptions to 'Employment First'

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

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

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

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

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

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

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

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

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

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

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

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

One In Six DD Jobs in RI Goes Unfilled; Raises Would Ease Crisis and Improve Service Quality

image by capitol tv 

image by capitol tv 

Kevin Nerney of the Rhode Island Developmental Disabilities Council, left, and Maureen Gaynor, second from right, share pleasantries just before their testimony before the House Finance Committee on Feb. 8. Looking on are Gaynor's support worker, Melanie Monti, and Emmanuel Falck of the Service Employees International Union State Council.  Image by RI Capitol TV. 

By Gina Macris

Raising the pay of Rhode Islanders who serve adults with developmental disabilities is not only about helping these poverty-level workers pay their bills, according to testimony before the House Finance Committee Feb. 8.

The proposed raises also will reduce staff turnover and, in turn, improve the quality of life for some of the state’s most vulnerable citizens, Donna Martin, executive director of the Community Provider Network of Rhode Island (CPNRI), told the legislators. 

Kerri Zanchi, the new director of the Division of Developmental Disabilities, agrees with Martin’s assessment. Zanchi says the pay hike is not only an “investment in the direct service professional, but an investment in our community" and in high quality services.  

She estimates that the wage increase will amount to an average of 42 cents an hour, and says that provider agencies are now experiencing a staff turnover rate of about 33 percent.

Carol Dorros, the mother of a 21-year-old man with behavioral issues and other complex problems, knows firsthand the value of support staff retention. When her son was still in high school and receiving some adult services from a private agency, his support worker changed four times during a single academic year. As a result, he made “no progress” from September to June, Dorros said.

 Maureen Gaynor rolled up to the speakers’ table in a power chair and used a computerized voice to speak the text she had written with a “headstick,” a pointer attached to a band around her head.

These people deserve higher pay, Gaynor said, explaining that support staff sometimes must help with the most intimate care, such as bathing, dressing and using the toilet.

And she reminded the legislators that she would not have been able to attend the hearing without an aide willing to drive her to the State House and get her to the basement hearing room.

After she spoke, Kevin Nerney of the Rhode Island Developmental Disabilities Council reinforced her remarks:  “When you help someone eat, drink or bathe, you need to have a really good relationship with that person. We’re not talking about folding shirts at the Gap or flipping burgers at McDonald's,” said Nerney.

At AccessPoint RI, a service provider, the starting salary is $10 an hour, or $22,000 a year, said the agency’s executive director, Tom Kane. The average pay was $10.82 an hour until the current fiscal year, when the General Assembly set aside $5 million for raises for developmental disability workers – the first pay increases since 2006, Kane said.

The added funding resulted in a 36-cent hourly increase, raising the average to $11.18, according to calculations made by service providers and others.

When Kane reviewed the the roster of employees at the time his agency processed the raises last fall, he said he was heartbroken to find a 30-year employee who was to receive a total of $13.10, with the pay bump.

Kane and others indicated they believe that a “15 in 5” campaign to raise the pay of direct care workers to $15 in five years (by July 1, 2021), is simply not enough.

Kane alluded to a drive launched by State Sen. Louis DiPalma, D-Middletown, last fall when he asked Governor Raimondo to include a raise for direct care workers in her budget proposal for the next fiscal year.. While she has done so, her $6.2 million set-aside for wages is about $$600,000 shy of what DiPalma requested.

Kane said raises should not only be based on a percentage increase.

 “A four or five percent increase on an insufficient wage is an insufficient increase,” he said.

If the minimum wage increases to $10.50 an hour, as Governor Raimondo has proposed, “and we give 5 percent” raises, Kane said, “we’re paying minimum wage again.”

Kane took issue with figures presented by Linda Haley of the House Fiscal Staff that the raises in the current budget also bumped up pay for supervisory personnel.

He said the raises all went to direct care workers, (as stipulated in current state budget.)  Some agencies, including AccessPoint, used other funding sources to provide raises or bonuses to supervisory employees.

At AccessPoint, Kane said, front-line supervisors spend half their time doing direct care anyway.

“It is incredibly important that this bill passes, hopefully with more money in it,” to support not only those providing direct care but people who perform other important tasks, like writing clients’ state-mandated individual support plans, which are akin to road maps for services that are specific to each client. Most of these employees “have not had a raise in 11 years,” he said. “I don’t know why they stay.”

Emmanuel Falck of the Service Employees International Union (SEIU) State Council represents 270 workers at the Arc of Blackstone Valley. One of them, a 52- year-old woman with 20 years’ experience in the field, used to be able to make ends meet by working 60 to 65 hours a week, he said.

But after an 18-month bout with cancer, the most she can now work is 20 hours a week. And the last vacation she had was three days in Washington, D.C., in 2000, Falck said.

He said the proposed 42-cent increase to the hourly rate would be much appreciated, but the state needs to move faster to raise workers’ pay to a living wage.

“I urge this committee to bump it up as fast as possible,” he said, proposing a $15 hourly wage by 2019 instead of 2021. As it is, direct support workers living in Rhode Island will be able to cross the state line to neighboring Massachusetts and do the same work for $15 an hour on July 1, 2018, Falck said.

Donna Martin, the CPNRI director, said that developmental disability service providers face a “tremendous crisis” in competing for the same pool of workers who serve elderly clients, thanks to a growing number of aging baby-boomers.

On average, the 27 providers belonging to CPNRI cannot fill one in six job openings, creating a vacancy rate of about 16 percent, she said. During exit interviews, workers say that they love their jobs but can’t feed their families with what they are paid, according to Martin.

As a result of the vacancies, employers are forced to spend money on overtime that they would rather put into worker pay and training, Martin said.

“I appreciate your sensitivity to the struggles of our staff,” Martin told the finance committee members.  “They are where the rubber meets the road when it comes to quality.”

Chris Semonelli of Middletown, the father of a 14-year-old girl with autism, put some historical context around the discussion of the wage proposal.

From 2006 through 2011, the budget for developmental disability services was reduced 20 percent, Semonelli said, quoting a profile of the system written by the Sherlock Center on Disabilities at Rhode Island College in 2013. And the services are not designed with an eye toward results. In the current design, more money gives more of the same service, he said.

That said, Semonelli said he strongly supports Governor Raimondo’s proposed wage increase in the next budget, as well as the “15 in 5” campaign. The governor’s plan for the next fiscal year “is a start,” said Semonelli, who also is co-director of an advocacy group called Friends of the Disabled on Aquidneck Island.

Although Wednesday’s hearing sounded like a budget discussion, it focused only on Article 23 – one of 24 chapters in the overall fiscal package Raimondo has submitted to the General Assembly.

The provision would require a one-time increase in the base pay of direct care workers, “in an amount to be determined by the appropriations process” and also require the Office of Management and Budget to perform an audit to ensure that the raises go only to those workers. 

Incentive Program for DD Service Providers Closer to Launch, But Lags Months Behind Court Deadline

By Gina Macris

Despite some progress, implementation still lags months behind schedule for a Rhode Island program intended to boost employment of adults with developmental disabilities.

Nor does the design of the program cover the full cost of staff training that is a prerequisite for participation, according to comments made at the monthly Employment First Task Force meeting Jan.10. The new employment supports program does reward private developmental disability service providers that already have trained staff at their own initiative.  

The General Assembly has allocated $6.8 million in the current budget for the incentive program to satisfy requirements of a 2014 federal consent decree requiring the state to boost its efforts to provide employment supports to adults with developmental disabilities.

Einloth                                                             photo by anne peters

Einloth                                                             photo by anne peters

But as the second half of the fiscal year gets underway, it appears that direct service providers have not yet been given the green light to bill for reimbursement under provisions of recently negotiated performance-based contracts, said Kim Einloth, a senior director at Perspectives Corporation.

A total of 19 contracts have been negotiated among 36 service providers operating in Rhode Island, a spokeswoman for the Executive Office of Health and Human Services said last week.

Despite an early morning snow storm Friday, Jan. 6, 18 agencies participated in a fair attended by some 40 special education high school students and another 40 young adults in the process of moving from school to adult life, according to the EOHHS spokeswoman. She anticipated the incentive program will serve about 200 adults with disabilities.

The incentive program was to have been in place Aug. 1, according to an order of the U.S. District Court.

Einloth said during the task force meeting that the director of the Community Provider Network of Rhode Island, Donna Martin, has conveyed her concerns about the program to the independent court monitor in the case, Charles Moseley.

Martin has not responded to requests for comment sent by email from Developmental Disability News.

At the task force meeting, Einloth and Kiernan O’Donnell of the Fogarty Center, another service provider, said that the program would pay a one-time bonus of up to $810 for each staff person trained to offer job-related supports, assuming that person serves ten clients.

O'Donnell          Photo by anne peters 

O'Donnell          Photo by anne peters 

So-called “self-directed” families who design programs for a single individual would get only $81 to cover staff training, O’Donnell said. Neither figure fully supports an investment of 40 hours of class time and extra field work that is necessary for certification, he said, despite EOHHS assertions to the contrary. 

Claire Rosenbaum, Adult Services Coordinator at the Sherlock Center on Disabilities at Rhode Island College, said self-directed families were given four days in November to figure out whether they should apply for the program. The written materials explaining the program were so technical that parents didn’t understand them and set them aside, Rosenbaum has said. As part of her job, she has email contact with some of the self-directed families.

When the application process opened, in November, the state was unable to tell providers exactly how many bonuses they would receive under terms of the incentive program, according to Einloth, although that gap has been clarified.

According to the contracts, once staff are trained, agencies receive bonuses for completion of the course, and may bill at enhanced rates for employment-related services to new clients, Einloth and O’Donnell said in an interview after the task force meeting. .

But the billing must be done in 15-minute increments, they said, in the same fee-for-service reimbursement model that has been criticized by the U.S. Department of Justice and the court monitor as being inflexible.

Other features of the program pay one-time bonuses when clients get jobs and remain employed for 90 and 180 days. 

In the meantime, agencies do not receive enhanced rates for providing the same employment-related services to current clients – only new ones approved by the state as participants in the incentive program, O’Donnell and Einloth said. O’Donnell said agencies now routinely file appeals, one by one, to get better reimbursement for employment-related services for individual clients. O’Donnell said he understands most of those appeals are granted.

The new incentive program appears to draw attention away from the fact that reimbursement rates are too low across the board for providers to do their jobs, O’Donnell said.

He and Einloth also are co-presidents of the Rhode Island Association of People Supporting Employment First, a professional organization.

Meanwhile, a task force member with developmental disabilities, Andrew Whalen, told his colleagues that he had received a letter a day earlier, on Jan.9, notifying him he is eligible for services from BHDDH. Whalen applied nearly a year ago, after the death of his mother in January, 2016.

He first mentioned the long wait for a decision at last month's meeting of the task force, when the discussion touched on the state’s efforts to render speedy eligibility decisions and the effect of continuing human services computer problems on services for adults with developmental disabilities.

.In December, Whalen also said the new computer system – called UHIP – deleted a separate application for food stamps that he had filed. At the most recent task force meeting, he said his application was “on hold” because, thanks to his generosity of his sister, the balance in his checking account was too high. 

Kevin Nerney, chairman of the task force, said that Whalen could solve the problem by moving the excess money to an ABLE account. ABLE, which stands for Achieving a Better Life Experience, is a new type of savings account authorized by Congress and the General Assembly that allows individuals with disabilities to set aside money without compromising their Social Security or Medicaid benefits.

Nerney said ABLE began accepting applications from Rhode Islanders only in recent days at https://savewithable.com Paper applications will be available in March, he said.  

RI Officials Correct Figure in Monitor's Report; Say Rate Hike Will Go To DD Service Agencies

By Gina Macris

All the workers who provide direct support services to adults with developmental disabilities in Rhode Island won’t be getting raises to at least $11.55 an hour, as indicated in the most recent report of a federal court monitor in the so-called “sheltered workshop” consent decree case.

The report from the monitor, Charles Moseley, says that the state Department of Behavioral Health, Developmental Disabilities and Hospitals (BHDDH) “will adjust all rates for Direct Support Professionals to a base rate of $11.55 an hour.”

 In reality, BHDDH will raise the “base rate” the state pays to the private agencies from $11.55 to $11.91 an hour, an increase of 36 cents; the private agencies, in turn, must use that new hourly figure to cover both salary increases and fringe benefits for their employees.

That was the word Sept. 13 from Mary Madden, the state’s consent decree coordinator, and Jennifer Wood, Deputy Secretary of Health and Human Services.

Wood also said it is impossible to determine how much of an hourly wage increase each worker will actually receive.  

 Approximately 4,000 workers staff the private agencies serving Rhode Islanders with developmental disabilities under contracts with the state. These direct support workers now make an average of about $10.75 an hour, although starting pay is typically minimum wage, or $9.60 an hour.

Different agencies have different pay scales and different arrays of benefits, Wood said. The General Assembly set aside about $5 million in the current budget for raises to direct support workers and for increased employer costs, but did not specify how much was to go into each category, she said.

One part of an order issued in May by U.S. District Court Judge John J. McConnell, Jr., required the state to “appropriately increase salaries, benefits, training, and supervision for Direct Support Professionals and Job Coaches” by Aug. 1.

The increases, retroactive to July 1, have not yet gone into effect, but Moseley, the monitor, said the judge’s order had been “provisionally met” because the state had submitted a plan that describes how the increases would be handled.

Before Moseley will sign off completely, he said, he needs more documentation in the plan, as well as confirmation that BHDDH has disbursed the money for the rate increases to developmental disability service agencies.

The issue of pay for workers was one of numerous points covered in Moseley’s report, submitted to McConnell Sept. 9 in anticipation of the judge’s review of the case Sept. 16. The session begins at 2 p.m.

Task Force Commentary on Monitor’s Report

Meanwhile, the monitor’s report also prompted criticism at a meeting of the Employment First Task Force Sept . 13.

Claire Rosenbaum questioned Moseley’s conclusion that the state had met the Judge’s Aug. 1 deadline for making it easier for providers to offer employment-related services to adults with developmental disabilities.

“I haven’t seen anything that offers supported employment services for my daughter, and we’re a month and a half past the implementation date,” Rosenbaum said. She serves on the task force as Adult Supports Coordinator for the Sherlock Center on Disabilities at Rhode Island College.

Nor did her daughter’s counselor at the state Office of Rehabilitation Services (ORS) know anything about career development planning, Rosenbaum said, even though the monitor said ORS, as well as BHDDH, and the Rhode Island Department of Education (RIDE) had all implemented training in the process of career development planning by the end of July as required by the judge’s order.

The judge’s order included several mandates related to supported employment, all with an Aug. 1 deadline.

 The requirements included a change in the model for reimbursing provider agencies, and a change in the financial authorizations made to individuals to pay for what Moseley called the “Person Centered Supported Employment Services Program.” 

The current authorization method requires individuals seeking job-related services to trade in time allocated to another category of support.

Madden acknowledged that the model for changing reimbursement to service providers had not yet been put into practice.

“What irks me,” Rosenbaum said, “is this status report says ‘provision met’, when it clearly has not been met.”

The state has said the reimbursement model would change for clients of agencies chosen to participate in a pilot program of performance-based contracts intended to provide the supports necessary to enable individuals with developmental disabilities to find and keep regular jobs.

BHDDH is not yet accepting applicatios for that pilot program, although Moseley said he is satisfied with the state's plan for the program . The state's lawyer will file the detailed plan with the court some time this week, according to Wood. 

In any event, the judge is requiring performance-based contracts for all service providers in the state by Dec. 31. 

Kevin Nerney, the task force chairman, took issue with the term “Person Centered Supported Employment Services Program” to describe what supported employment services are supposed to provide.

Such individualized, employment-related services have not been rolled out to direct support staff at provider agencies, he said. Until employment-related services have been put in place, he said, they should not be elevated with an important-sounding title.

The task force was created by the 2014 federal consent decree, in which the state agreed to correct violations of the Americans with Disabilities Act by moving from segregated sheltered workshops and day programs to supports for community-based employment and activities for adults with developmental disabilities.

The consent decree envisioned the task force as a bridge between state government and the community, although the group is still exploring how its role will play out.  Its next meeting is scheduled for Oct. 11.

 

 

 

 

RI House Finance Chairman Asks Whether DD Services Really Need Money; Gets Emphatic Yes in Reply

Maureen Gaynor uses assistive technology to testify before the Rhode Island House Finance Committee May 26. She says people with disabilities want the same thing everyone else does; a job, a role in their communities, and purpose in their lives. To her left is Lisa Rafferty, executive director of Bridges, a disability service provider.

By Gina Macris

Rhode Island’s developmental disability agency needs more revenue in the next fiscal year because it will not come close to saving a target of $16.2 million in group home expenses, the agency’s director, Maria Montanaro, told the House Finance Committee in a hearing May 26.

Montanaro emphasized that after eight years of cost-cutting in the developmental disability budget, the state now needs to add revenue to ensure that Rhode Island residents who live with intellectual challenges get the Medicaid-funded services to which they are entitled by law.

The Committee chairman, Rep Marvin L. Abney, (D-Newport), wasn’t necessarily convinced by Montanaro’s testimony, asking rhetorically, “Is money really the problem?” 

ABNEY                                          Image by Capitol TV

ABNEY                                          Image by Capitol TV

“We’re going on and on and on and on,” Abney said. “I’ll leave you with this thought. It’s not a question, but we are concerned,  is money really the problem? When we’re talking about efficiencies to the system, is money always the answer to that? You don’t need to respond, but just think of that as a director,” he said.

Montanaro did not reply, but other witnesses did say a lack of money is a key factor in ongoing federal court oversight of the state’s compliance with a two-year-old consent degree in which Rhode Island agreed to bring its disabilities services in line with the Americans With Disabilities At (ADA).

The agreement, with the U.S. Department of Justice, requires the state to enable more persons with disabilities to work in regular jobs, rather than in “sheltered workshops.” The decree also requires the state to help persons with disabilities participate in other community-based activities.

In an order issued May 18, Judge John J. McConnell, Jr. laid out 22 short-term deadlines the state must meet. Missing even one of them could trigger a contempt of court hearing. If the state is found in contempt, the judge would require the state to pay a minimum of $1,000 a day for violations of the consent decree, or as much as $1 million a year.  

The first requirement in McConnell’s order is that “the State will appropriate the additional money contained in the Governor’s budget for fiscal 2017 in order to fund compliance with the Consent Decree.”

The subject of the House Finance Committee’s hearing was Governor Gina Raimondo’s proposed budget amendments for the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH),  for 2016-2017 fiscal year, which begins July 1.

In all, Raimondo has requested $18.7 million in added revenue for developmental disabilities, offset by an accounting shift of $1.8 million in home health aide services from BHDDH to the Executive Office of Health and Human Services.

Also on the table is a proposal for about $6.8 million in additional appropriations in the current fiscal year to address a current budget deficit in developmental disabilities. 

If the General Assembly approves the supplemental appropriation, the bottom line in BHDDH’s Division of Developmental Disabilities would increase from $230.9 million to $237.7 million before June 30. Raimondo’s request for an additional $16.9 million in the coming fiscal year would push the overall disabilities budget up to $254.6 million, with about half that amount coming from state coffers. 

In fiscal 2016-2017, Raimondo seeks to make up $10.2 million of the $16.2 million she originally envisioned saving in reduced group home costs.

The governor also wants an additional $9.2 million in funding to raise salaries for staff who work with adults with intellectual challenges, or $4.1 million more than she asked for in February. 

In addition:

  • $180,000 would be set aside for an ombudsperson to protect the rights of persons with developmental disabilities
  • ·4.4 million would be restored to the BHDDH budget to prevent the inadvertent loss of professional services like occupational and physical therapy for some persons with developmental disabilities.

All the money comes from Medicaid, with a roughly dollar-for-dollar match in federal and state spending.

Montanaro, the BHDDH director, said adequate funding of developmental disabilities in the next budget would prevent BHDDH from running a deficit every year.

The developmental disability caseload, 4,000 to 4200 annually, also should be included in calculations of the state’s semi-annual Revenue and Caseload Estimating Conference to prevent unexpected surprises in the budget, she said. 

Montanaro                                                               Image by Capitol TV

Montanaro                                                               Image by Capitol TV

The twice-yearly conference is a forum for top fiscal advisors to the Governor, the House and the Senate to reach consensus on the state’s revenues and Medicaid caseload expenses for the coming budget year.  

Montanaro said the $9.1 million in raises for direct care workers are necessary to satisfy the consent decree.

Without being able to offer higher pay, the private agencies that provide most of the direct services won’t be able to re-direct their efforts toward supporting their clients in jobs as the consent decree requires, Montanaro explained.

Workers make an average of about $11.50 an hour, often less than the clients they support in jobs in fast food restaurants, according to testimony at the hearing.

BHDDH originally counted on achieving $16.2 million in savings in the next fiscal year by convincing hundreds of group home residents to move into less expensive shared living arrangements with individual families, Montanaro said.

However, that effort has encountered resistance by individuals and families who find safety and security in group home living, she said.

Since BHDDH began what Montanaro described as a “full court press” on shared living at the beginning of this year, 10 group home residents have moved into private homes with host families, according to BHDDH statistics.

There are now 288 adults with developmental disabilities in shared living – an option that has been available for a decade in Rhode Island – and about 1300 persons living in group homes in Rhode Island.

Tobon                                                           Image by Capitol TV 

Tobon                                                           Image by Capitol TV 

When Montanaro originally testified in January about the plan to shift to shared living, it was in the context of closing a projected $6 million deficit in the current fiscal year.

Recalling that testimony, Rep. Carlos E. Tobon, (D-Pawtucket), a Finance Committee member, said he had been “really concerned” about the timetable.

“You had to sit over there and pretty much, not  convince us, but tell us that this is what you were going to do,” Tobon said. “What was your confidence in actually achieving that?”

“I think I was very clear with the committee that it was a very aggressive approach,” Montanaro replied.

“But the problem, Representative, that I want you to understand, is that we are mandated by (state) law to come up with a corrective action plan” to close a budget deficit, she said.

The choice was either to continue the eight-year pattern of cutting benefits or eligibility, while the federal court watched “the crumbling of that system,” Montanaro said, or to try to get savings by encouraging persons with disabilities to move into more integrated living arrangements.

Montanaro described it as a “Sophie’s Choice,” a dramatic allusion to a forced decision being forced to decide between two terrible options.

 “We knew we might have to come back and tell you our actual experience with that,” she said alluding to the fact that the short-term shared living effort has fallen far short of the goal.

 A gradual shift toward shared living is in keeping with a broad, long-range federal mandate to desegregate services for individuals with a variety of disabilities, but it does not address the Rhode Island consent decree, Montanaro said.

 
In the past several months, as the federal court watched BHDDH spending nearly all its efforts to try to save more money instead of working on the employment requirements of the consent decree, Montanaro said, the judge and the court monitor in the case became “very worried.”

The monitor, Charles Moseley, has said that timing is critical.

Unless the state meets certain benchmarks now, Moseley has said in reports to the court, it will not be able to fulfill the long-range requirements of the consent decree, which calls for a ten-year, system-wide shift from segregated to integrated day time supports for adults with developmental disabilities to comply with the ADA. The decree, signed April 8, 2014, expires Jan. 1, 2024. 

Montanaro said that concerns of the monitor and the judge over the state’s emphasis on cost-cutting instead of the consent decree requirements prompted a recent court order that spells out conditions under which Rhode Island could be fined as much as $1 million this year for contempt. 

In her testimony before the House Finance Committee, Montanaro drove home her point.

“The last thing I’ll say about it is that we really can’t afford to direct all of our departmental activity toward an effort that isn’t actually the effort that the consent decree is obligating us to pay the most close attention to, which is the employment issue,” Montanaro said.

“Judge McConnell and the court monitor want to see the state of Rhode Island make the necessary financial investments in transforming the system, and you can’t transform everything at once,” she said, alluding to Moseley’s concerns about timing.

Montanaro continued to explain, but that’s when Abney, the committee chairman, interrupted, asking his rhetorical question: “Is money really the problem?” 

Later in a hearing that lasted nearly two hours, Tom Kane, CEO of a private service agency, and Kevin Nerney, associate director of the Rhode Island Developmental Disabilities Council, each told Abney that “it is about the money.”

Nerney said, “Whether I think it’s about money, or whether anyone else thinks it’s about money, there’s a federal court judge that thinks it’s about money, and the Department of Justice does, as well.”

Kane, CEO of AccessPoint RI, said “The reason the DOJ is here is a money problem,” he said. “We have jobs available for people (with disabilities) waiting to work,” he said, but providers of developmental disability services can’t hire the support staff “to make that happen,” he said.

Of 77 job applicants at AccessPoint RI during the month of April, 35 refused a job offer because of the low pay, Kane said. “They tell me they can make more sitting home collecting” unemployment benefits, he said.

Serpa                                                  Image by RI Capitol TV 

Serpa                                                  Image by RI Capitol TV 

As he has testified at previous State House hearings on the developmental disabilities budget, Kane said private service providers operate at an average loss of about $5,000 a year for each person they employ. 

Rep. Patricia A. Serpa, (D-West Warwick, Coventry and Warwick), asked whether executives of developmental disability agencies have received raises while their workers have been paid low wages in recent years.

Kane said he gave all AccessPoint RI employees a 3 percent raise in January, the first time since 2006. At the start of the 2011-2012 fiscal year, after the General Assembly voted to cut $24 million from the developmental disabilities budget, everyone took a 7.5 percent pay cut, he said.

Donna Martin, executive director of the Community Provider Network of Rhode Island, CPNRI, said all the member agencies that cut pay that year started at the top.

A review of IRS reports from organizations exempt from taxes shows that executives of developmental disability agencies with budgets less than $5 million make 25 percent less than those of other non-profit agencies in Rhode Island, Martin said.

In developmental disability agencies with budgets greater than $5 million, the executives make 30 percent less than those of other non-profit organizations in the state, she said.

Kane, meanwhile, asked the committee to think of the governor’s budget proposal as a “jobs request.”

KanE                                                    ImAge by Capitol TV 

KanE                                                    ImAge by Capitol TV 

Kane submitted a copy of research done by the University of Massachusetts Amherst which indicates that every million dollars invested in disability services in Rhode Island creates a total of 25 jobs. Based on that research, Kane said later, the $9 million Raimondo has requested to raise pay for direct care workers would translate into a total of 225 jobs.

Kane also said the state should “braid” funding from BHDDH with the Office of Rehabilitation Services of the state Department of Human Services (ORS) to fund “employment teams” that would be more effective than the two agencies working separately to try to do the same thing.

That idea came out of recent discussions between state officials and private agencies about a system-wide redesign of services, Kane said.

Bob Cooper, executive secretary of the Governor’s Commission on Disabilities, said he would add the state Department of Labor and Training (DLT) as another “braid” in Kane’s analogy.

Federal rehabilitation dollars channeled through DLT reimburse the state 78 cents for every dollar the state spends; a better deal than the 50-50 match from the Medicaid program, he said.

The federally-funded Disability Employment Initiative, a workforce development demonstration grant run by DLT, “was making a difference” before the grant ended and the program shut down March 30, Cooper said.

If the state is to comply with the consent decree, disability-related job supports involving BHDDH and ORS must be merged with DLT, the state’s primary economic development agency, Cooper said.

 

 

Bigger DD Budget Appears "Safe", Families Upset by Lack of Funding and Services

Photo by Anne Peters

Photo by Anne Peters

Donna Martin, Executive Director of the Community Network of Rhode island, left; and Kevin Nerney, Chairman of the Employment First Task Force, right. 

By Gina Macris

Despite positive signals about more state funding for developmental disability services in Rhode Island, members of the Employment First Task Force acknowledged May 10 that in general, families remain angry and upset with officials of the state’s primary service agency, the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Task Force members who keep tabs on developmental disability issues on the General Assembly’s legislative agenda said that Governor Gina Raimondo’s plan for increased funding appears to be safe as the legislature approaches the final three or four weeks of its session.

Donna Martin, executive director of the Community Provider Network of Rhode Island (CPNRI), said she heard recently that more legislators  grasp the idea that “the consent decree is something they need to pay attention to,” even if they don’t understand all the details.

“That’s good to hear,“ said Charles Moseley, assigned to monitor the state’s implementation of a 2014 consent decree between the state and the U.S. Department of Justice. In the consent decree, the state agreed to reorganize daytime services for the developmental disabled to focus on community-based jobs and other activities to comply with the integration mandate of Title II of the Americans With Disabilities Act. (ADA)

U.S. District Court Judge John J. McConnell, Jr. has promised “swift and dramatic” action if the General Assembly does not provide sufficient funding to meet the immediate requirements of the decree.

At Tuesday’s task force meeting, informal updates on other disability-related topics suggested that, in general, families apparently are not yet realizing benefits of the consent decree, now at the start of the third year of its ten-year span.

There is widespread dissatisfaction among families about issues that reflect chronic underfunding, complicated by a lack of communication or miscommunication from the state, according to the tenor of comments shared at the meeting.

Kevin Nerney, chairman of the task force, expressed concern about individuals with developmental disabilities who had difficulty finding suitable services and had received letters from BHDDH saying they had been cut from the rolls because they hadn’t used their allocations.

Photo by Anne Peters  

Photo by Anne Peters 

Some of the concerns go back more than two years. Claire Rosenbaum, Adult Services Coordinator at the Sherlock Center on Disabilities, (right) said she understood from informal conversations with BHDDH officials that about 400 individuals had received such letters as of February, 2014.  In the fall of 2015, when the topic was revisited by the Rhode Island Developmental Disabilities Council, a BHDDH official said another 50 individuals had been sent similar letters.

Rosenbaum said after Tuesday’s meeting that she understood BHDDH social workers tried to reconnect with individuals who they knew had been looking unsuccessfully for services.  The task force did not have more recent information on how many of those removed from the BHDDH client roster may have been reinstated.

Efforts to get additional information from BHDDH were unsuccessful Wednesday.

About two dozen private agencies providing most of the supports in Rhode Island to individuals with intellectual or developmental disabilities are operating at a loss and routinely tell prospective clients their programs are full.

Rosenbaum also said young adults eligible for BHDDH services are continuing to leave school and sit at home for months at a time because suitable adult programs are unavailable.

Although a spokeswoman for the state has said eligibility for adult services begins at age 18, Rosenbaum reiterated that, in actuality, BHDDH does not determine eligibility until about four to five months before applicants leave school or turn 21, leaving insufficient time to arrange services.  

In many cases, school departments provide services for intellectually and physically disabled students until they turn 21. Even so, under provisions of Rhode Island law, students with intellectual disabilities are eligible for adult services at the age of 18. Until students leave high school,  the consent decree envisions adult services as supplementary, such as facilitating and supporting vocational assessments and employment experiences, or actual part-time or summer job placements.

In addition, the adult service system would pay for the time of social workers and other professionals to help students and their families formulate individualized adult programs and find service providers.

 (BHDDH is in the process of negotiating a contract with the Rhode Island Parent Information Network to provide support to some young adults and their families who are grappling with transition issues, according to RIPIN’s representative on the Task Force, Sue Donovan.)

Rosenbaum, meanwhile, has filed a statement with U.S. District Court describing the problem, which figured in testimony in an April 8 evidentiary hearing before Judge McConnell. McConnell is poised to consider a request for corrective action to implement the consent decree. The request has not yet been filed.

While BHDDH officials insist there have been improvements in an interview procedure connected with periodic reviews of individual funding levels, Mary Beth Cournoyer, (below), a parent representative on the Task Force, said those assertions are not borne out by an informal survey she did of parents and others familiar with the process.

Photo by Anne Peters

Photo by Anne Peters

Cournoyer said that she knows interviewers have been told “not to badger parents” by challenging the answers they give about their son’s or daughter’s needs.

Nevertheless, the interviewers continue to do so, said Cournoyer,

She said she has heard enough to recognize a pattern of argumentative interviews followed by reduced funding levels.

Others have complained about the so-called Supports Intensity Scale (SIS) interview and the associated funding decisions,  most recently at a “town hall” meeting April 27. There, the mere mention of the “SIS” by a BHDDH official triggered a round of laughter in an audience of about 100 people, mostly family members.

On that day, Charles Williams, director of the BHDDH Division of Disabilities, told parents to file an appeal if they disagree with the SIS results. Almost all, if not all, appeals are granted, he said.  

The SIS interview, based on a set of standard multiple choice questions, was designed by the American Association of Intellectual and Developmental Disabilities to gauge the supports or services needed to help an individual achieve his or her goals.

It does not take into account the risk of removing those supports.

The DOJ has found that that BHDDH has used the SIS to determine funding levels, and the consent decree prohibits the continuation of that practice.

The Employment First Task Force, required by a provision of the consent decree, is a group representing community agencies, individuals with disabilities and their families. Among other things, it was intended to serve as a bridge between state government and the public.

But public reaction to the consent decree, most prominently the backlash at the recent “town hall” meeting, has led Nerney, its chairman, to question the role of the task force as a filter for communications from the state.  

He said there hasn’t been an open line of communication with the state in the past, and he told the DOJ that “I don’t think this group should be a funnel.” Expanding on this point, Nerney said the real need is for “actual participation” in the plans that emerge from the state to comply with the consent decree.

“When BHDDH develops a plan, they should have stakeholders at the table,” he said. The more participants at the table, the more stakeholders there will be in the outcome, he said.

Others agreed. “Everybody wins when we strategize and work together,” said Kim Einloth, senior director at Perspectives Corporation, a private service provider.

Tom Kane, CEO of Access Point RI, another service provider, said he would like to have a plan “shared with everybody and shaped by everybody.”

 “We would like to have the ability to anticipate so we can pass information along as well. I, for one, am tired of being reactive,” he said.