Eric Beane, RI Secretary Of Health And Human Services, To Step Down; Career Options "Open"

By Gina Macris

 ERIC BEANE * Photo Courtesy Of State Of RI

ERIC BEANE * Photo Courtesy Of State Of RI

Eric Beane, Rhode Island’s Executive Secretary of Health and Human Services, will step down at the end of the year, the office of Governor Gina Raimondo announced Nov. 15.

Over the four years of Raimondo’s first term, Beane has served the governor in several high-level capacities, most notably as a troubleshooter assigned to clean up the disastrous roll-out two years ago of UHIP – Unified Health Infrastructure Project – a computerized public assistance system that left thousands of needy individuals without benefits.

Raimondo has appointed Lisa Vura-Weis, a deputy chief of staff in her office, as interim Secretary while a search for a permanent replacement is underway.

Beane, whose last day on the job will be in mid-December, plans to travel and spend time with family and friends, according to a spokeswoman for the Executive Office of Health and Human Services. He is “leaving his career options open,” the spokeswoman said.

In a statement, Raimondo said she is “deeply grateful for Eric's four years of service to the people of Rhode Island. Because of Eric's work, Rhode Island's health and human services are undoubtedly stronger today than they were when I first took office."

Raimondo, in addition to noting his work on the UHIP system, credited Beane with directing the reform of the Department of Children, Youth and Families (DCYF) and overseeing the implementation of a “nationally recognized action plan to address the addiction and overdose crisis that is saving Rhode Islanders’ lives.”

Beane, a former trial attorney for the U.S. Department of Justice and former deputy chief of staff for former Governor Martin O’Malley of Maryland, came to Rhode Island as Raimondo’s deputy chief of staff in 2015. He also served as Raimondo’s Chief Operating Officer, overseeing social services, and served as acting director of the Department of Human Services before he was named to the Secretary’s position in the wake of UHIP scandal in May, 2017.

As acting Secretary, Vura-Weis will focus primarily on budget and management and help with a comprehensive search for a permanent replacement to Beane, according to a statement issued by the governor’s office.

In her current position she has focused on health and human services, administration, and management, working closely with Beane and Raimondo on UHIP.

Before joining the Raimondo administration she worked for the Boston Consulting Group on projects related to healthcare effectiveness. Vura-Weis also has worked for the state of New York on healthcare insurance reform. She has a master’s degree in business administration from Columbia University and a master’s degree in public health from Princeton.

The Secretary of Health and Human Services oversees the Departments of Health, DCYF, the Department of Human Services, and the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH). Among other things, BHDDH is charged with implementing reforms in services for adults with developmental disabilities to comply with a 2014 federal civil rights agreement with the Department of Justice.

Streamlined RI DD Regulations Well-Received at Hearing; Public Comment Runs Until Oct. 6

By Gina Macris

A public hearing Sept. 17 on proposed regulations for developmental disability services in Rhode Island lasted less than 15 minutes – a brevity which seemed to reflect well on the state’s rule makers and the committees that helped streamline hundreds of pages of material, some of which dated back more than a decade.

Donna Martin, executive director of the Community Provider Network of Rhode Island (CPNRI), said as much. She commended all state officials involved in drafting the proposed regulations, particularly those in the Office of Facilities and Program Standards and Licensure, “for their fidelity to an open stakeholder engagement process as these regulations were reviewed and updated.” The office is part of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals.

Representatives of service providers, families, advocacy organizations, and adult consumers of services all participated in a review process launched a year ago.

Martin did find some terminology that she said needed correcting. She said those in the developmental disability community take exception to the identification of some among them as “patients” who may be “mentally retarded.”

The term is so offensive to those with intellectual or developmental disabilities and their supporters that there is a national campaign to eradicate it. It’s called “Spread The Word To End The Word”.

In 2010, Congress passed Rosa’s Law to replace the term “mental retardation” with the words “intellectual disability” in relevant federal statutes. Most states have followed the federal government’s lead, according to the Institute on Disability at the University of New Hampshire.

The lone instance Martin spotted in the overall proposal was not in developmental disability regulations themselves, but in a department-wide rule regarding the duty of certain officials to report suspected neglect or abuse of vulnerable individuals.

Martin also objected to proposed regulations she said would be burdensome or costly for private service providers, including:

  • having to pay for background checks for potential employees. “This is a costly, unfunded mandate, and we urge the state to enact a policy that aligns with state statute ensuring that the state pays for or reimburses” developmental disability and behavioral healthcare providers for these costs, she said.

  • treating outside providers of temporary “respite” care as agency employees, which would “require a significant change in policy and practice and was not vetted as part of the stakeholder process.”

  • keeping health care records for 10 years instead of the current 7 years.

  • requiring agency staff to receive four hours a year of fire safety training, which is “excessive and reduces the available training time (for) other equally important issues.” Instead, regulations should “suggest that all staff receive annual fire safety training.”

In another comment, Martin said that the definition of the “staff” of developmental disability service organizations licensed by the state should not include interns or volunteers, who are not employed by these providers.

The public comment period ends Oct. 6. Comments may be addressed to Gail Theriault, Esq., Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, Office of Legal Counsel, Hazard Building, 41 West Rd.,Room 241, Cranston, RI 02920.

Artist And Others Who Rely On State-Funded Support Speak Up For What Matters To Them

Wendy LeBeau.jpg

By Gina Macris

Most people don’t  give a second thought to what it takes to meet a friend for coffee or a shopping foray. They just call or text and go. 

But for Wendy LeBeau, a Rhode Islander living with the challenges of developmental disabilities, arranging a casual get-together is a big deal. She’d have to get someone to drive, not so easy when her schedule of state-funded supports allows limited time for one-on-one service.

 On Aug. 7, LeBeau joined some 50 people at an event space next to The BRASS in Warren– an art gallery where she works – for the first of several  “Community Conversations” sponsored by the Community Provider Network of Rhode Island, a trade association of private service providers that support adults with developmental and intellectual challenges.

When LeBeau was asked about her ability to connect with friends, she replied “only at work.”  She is a contributing artist at The BRASS, where she has created abstract canvases of dancing, swishing color. 

The work of LeBeau, which features a carefully chosen palette and controlled style that belies the flowing compositions, has been shown at the National Portrait Gallery at the Smithsonian Institute and an annual Art Ability exhibit at Bryn Mawr Rehab Hospital in Philadelphia.

LeBeau’s comments, as well as those of others, put a face on what it means to depend on others to arrange even a simple outing.  

The remarks responded to questions posed by Donna Martin, executive director of CPNRI, who made her way around the audience, asking individuals seated in a huge circle of chairs to share their experiences, including any barriers they faced to feeling included in their communities.

In various ways, LeBeau and others pointed to a common underlying theme – a shortage of qualified staff available to individualize services so that adults with developmental disabilities may access their communities for work and leisure, as envisioned by the Americans With Disabilities Act. 

Margaret, who uses a wheelchair, said as much: “We need more staff.”  

Since a $26 million funding cut by the General Assembly forced private service providers to slash wages in 2011, the field has been plagued by high turnover and difficulty among employers in recruiting and retaining new staff.  At the same time, a federal consent decree in effect since 2014 requires more training and professionalism in the way adults with developmental disabilities receive support services. 

Since 2011, there have been a few incremental wage increases, but the field of direct care has not recovered. 

Martin puts the current average pay for direct service workers at about $11.45 an hour.  That’s $1.30 above the minimum wage of $10.10. Rhode Island’s minimum wage is set to increase to $10.50 January 1, 2019, but the pay for those who work with adults with developmental disabilities will remain the same. 

Darlene Faust, Director of Self-Advocacy and Work Preparedness at Looking Upwards, cited the labor shortage and a lack of adequate transportation as barriers to inclusion.

She said her agency recently lost a staff member to Walmart.

After the meeting, Faust elaborated on the staffing situation. When workers call in sick, she said, she and others in management often must fill in to provide direct support, because the back-up pool is so small.

And when the agency is short-staffed, trips into the community must be prioritized. Clients must get to their doctors’ appointments and to their jobs no matter what, she said. 

Faust has worked with adults with developmental disabilities for 20 years, she said, because “I love it.”

But the struggles are “heartbreaking right now,” she said. “We’re all in it together. It’s all the same community, whether you’re providing service or receiving support.”

“People outside the community don’t always understand,” she said.

A number of people who spoke in American Sign Language said that a lack of interpreters posed barriers in various areas of daily living, including their ability to find jobs.

Meanwhile, a Woonsocket man who called himself Tim said he is 28 and has been looking for work since he was in high school.

Although several  prominent  corporate employers  have taken the lead in hiring adults with developmental disabilities in Rhode Island, Tim said he believes there is still “a lot of prejudice out there” against taking on workers who face intellectual or developmental challenges. 

He said it would be helpful if agencies providing employment supports could offer “task-oriented vocational training” to job seekers before they actually apply for a particular position.

The “community conversation” is the first of five such meetings planned by CPNRI in the coming months to cultivate and encourage sustained grass-roots advocacy on issues affecting anyone with a stake in services for adults with developmental disabilities, Martin said after the meeting.

The schedule for the remaining conversations, in different areas of the state, is still being finalized, she said.

CPNRI also plans candidate forums for legislative and gubernatorial candidates after the September primary elections, Martin said.

In a show of hands, about two thirds of the audience indicated they were registered to vote, including most of those who receive services funded by the state.

 

RI Consent Decree Task Force Details Concerns About DD Services In Report To Federal Monitor

By Gina Macris

Many young adults with developmental disabilities in Rhode Island are still not receiving services to which they are entitled in a timely manner. Some are not getting services at all.

These conclusions have emerged as the consensus of the Employment First Task Force (EFTF) concerning Rhode Islanders with intellectual and developmental challenges who are trying to get regular jobs and other integrated services promised by a federal consent decree signed nearly four years ago.

The EFTF grew out of a provision of the 2014 federal consent decree which called for a bridge between the public and state government.  An independent court monitor on the case has made it clear that he expects the EFTF to provide a reality check from the community as the state tries to desegregate its services for adults with developmental disabilities to comply with the Americans With Disabilities Act.

The Task Force, including developmental disability professionals in the private sector, family members and consumers themselves, summarized its observations and recommendations covering the last half of 2017 in a recent progress report to the court monitor, Charles Moseley.

In 2016, under pressure from Moseley, the U.S. Department of Justice, and U.S. District Court Judge John J. McConnell, Jr., the state cleared a backlog of as many as 250 applications for adult services and developed an “eligibility by 17” policy.

The policy is intended to allow families plenty of time to plan a smooth transition for their sons and daughters to move from high school to the adult world. Most special education students eligible for adult services from the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) stay in school until the age of 21.

Nearly a year after the “eligibility by 17” policy was announced, in July, 2017, EFTF members were still hearing comments relayed by special education professionals that some families of students were notified of their eligibility but weren’t told how much money they would be allocated in time to plan individualized and meaningful services.

In response to follow-up questions from Developmental Disability News, a BHDDH spokeswoman said in an email August 3 that the agency, working with the Rhode Island Department of Education, local school districts and the Rhode Island Parent Information Network,  is “able to adhere to (the state’s) ‘eligibility by 17 policy.’ ”

"Logjam Cited In Onset Of Adult Services

 But five days later, Claire Rosenbaum, an EFTF member who works as the adult services coordinator at the Sherlock Center on Disabilities at Rhode Island College, said at a public forum that “there seems to be a logjam” when families are trying to figure out how much money the state has awarded them and what it will buy.

At the time, Kerri Zanchi, director of the Division of Developmental Disabilities, (DDD) said her division aimed to give families a one year to plan before their son or daughter leaves left high school and needs needed adult services.

But Rosenbaum said a year is not long enough. Families may explore their options and settle on a particular agency, only to be told it cannot accept a new client with a particular disability or disabilities, she said.

That scenario is not uncommon. A precarious fiscal landscape has prompted many providers of developmental disability services to limit the number of new clients. 

Often, families turned down by one or more agencies  decide that the only way they can get a customized, high quality program is to organize it themselves and pay individual workers through a designated fiscal agent that handles the budget. Once that decision has been made, the families must begin planning all over again, Rosenbaum said, reiterating her conclusion that a year is not enough.

In December, DDD provided data about "eligibility by 17" that EFTF had requested six months earlier, including:

  •  The number of applications and the ages of applicants
  •  The number found eligible and the time span between application and eligibility determination
  •  The number of newly eligible persons who received an initial needs assessment and the time span between the eligibility determination and the assessment interview
  • The number who began receiving adult services and the time span from the completion of the needs assessment

In its report, EFTF said that DDD is “actively charting when and why gaps in the process appear.” 

The “gaps in the process” are not defined in the report. But it said Task Force members and state officials agreed to meet regularly to “determine what issues, if any, exist in this process and how to address these issues.”

Data released by BHDDH in quarterly public forums in November and February shed light on some of the requests that had been made by EFTF; the number of applications, the ages of the applicants, and a breakdown on the proportion found eligible. 

The “eligibility by 17” policy assumes that 16 and 17-year olds are submitting applications to BHDDH for adult services, but the most recent data indicates that the 16 and 17year-old age group accounted for only 11 percent of applications between August, 2016 and February 10, 2018. The lack of applications from younger students suggests that the “eligibility by 17” policy hasn’t been thoroughly communicated to families. (See chart below.) 

graph on age distribution of applicants.JPG

At the same time, one table indicates that the proportion of applications from 16 and 17 year-olds has been increasing in the last year.

students applying earlier.jpg

At the most recent public forum, BHDDH officials also presented information on the proportion of applicants that have been found eligible for services. Of 635 applications received between August, 2016 and Feb. 16, 2018, a total of 595 have been decided, including 264, or 44 percent, that were approved without any additional documentation.

The data indicated that an additional 158, or 27 percent, eventually would be approved once documentation was completed.  

Other Issues Raised By Task Force

The Task Force also expressed concerns about other issues. They include:

  • A lengthy needs assessment done for each person eligible for services
  • The ramifications of a push for more individualized, or “person-centered” services and the planning that goes into them
  • An overall approach, dubbed “conflict-free,” in which planning, funding, and service delivery are handled by separate entities so that the best interests of individuals with developmental disabilities are not compromised. Currently, BHDDH handles funding and assessment and approves individual service plans developed by private agencies or independent developmental disability professionals.

Assessing Individual Needs  

 In November, 2016, the state implemented a revised needs assessment, called the SIS-A  (Supports Intensity Scale - A). The SIS-A had been promoted as more accurate than the previous version, and the Task Force concurred.

“Reports seem to indicate better results,” the report said.

At the same time, the Task Force found “ongoing challenges.”

For example, the Task Force said the SIS-A, developed by the American Association on Intellectual and Developmental Disabilities, was “not intended to be a funding mechanism.” That’s the purpose for which it is used in Rhode Island and many other states.

The Task Force recommended that an independent third party be chosen to provide “better interviews” and eliminate conflicts with funding decisions.

Highly detailed interviews with persons eligible for developmental disability services and their families are at the heart of the SIS-A assessment process. Both the assessment and the individual funding decisions are in the hands of BHDDH.

During the interviews, families are very reluctant to speak in great detail about the “deficits and struggles” of the individual at the center of the assessment process, but they don’t understand that this hesitance may result in lower funding for their loved one, the Task Force said.

“Families don’t understand that the first ten minutes of questions which capture exceptional medical and behavioral issues dictate a substantial difference in funding,” the report said.

The Task Force recommended that community organizations, like Advocates In Action, the Cross Disability Coalition, The Rhode Island Public Information Network, and a new parent advocacy group called  RI-FORCE, offer training to their constituencies on the interview process of the SIS-A.

A Call for True Conflict–Free Planning

The report tackled the challenges of so-called person-centered planning, in which the needs and preferences of an individual drive short-range and long-range career and life goals, regardless of the immediate limitations of program offerings of a particular agency.

 In person-centered planning, these individual needs and preferences also drive budgetary decisions, although it is generally understood that not all the supports needed by a person with developmental disabilities will be provided by paid staff.  

“It is our opinion that implementing real, conflict free person-centered planning could have a greater positive effect on people’s lives than the consent decree itself,” the Task Force wrote.

“While there has been some recent movement on the issue,” according to the report,  Rhode Island has been out of compliance for four years with Medicaid regulations for conflict-free individualized planning and management of services.

The Task Force said individuals with developmental disabilities, their families, and service providers all have shown resistance to the person-centered planning initiative now underway.

Some consumers and their families “view this as an additional layer of bureaucracy, while others would prefer all their dollars go to services rather than planning. Some family members are concerned that they would not be as involved using this process,” the report said.

Service providers, who are paid for planning individualized client programs, fear that they will not be able to meet the individualized needs of clients, particularly with limited funds, high staff turnover, and limited transportation options, according to the report.

There is a concern that “conflict-free” removes the staff who best know the individual from the planning process, the Task Force said.

It also expressed concern that there are no additional funds to provide conflict-free planning, saying that redistributing existing planning funds that now go to private providers “may destabilize already underfunded services.”

While calling for additional funding for person-centered planning, the Task Force also urged a continuation of a series of workshops on “person-centered” thinking and planning that is offered by the Sherlock Center on Disabilities at Rhode Island College to promote better communication on the topic. 

Some of the perceptions about person-centered planning “are based on misunderstandings and the general fear that comes with any change,” according to the report. “Communication on this issue will be extremely important.”

BHDDH is trying to address the issue of funding, both to achieve conflict-free planning and case management and to balance its budget in the next fiscal year.

Governor Gina Raimondo’s budget proposal seeks the General Assembly’s approval to amend the Medicaid State Plan so BHDDH can apply for a Health Home waiver that would provide a 90 percent reimbursement rate for person-centered planning and other specific services for two years. 

The earliest such a Health Home might begin operation, on a pilot basis, would be in January, 2019,  and that might be optimistic, according to Rebecca Boss, the BHDDH director.

Supported Employment At Issue

The Task Force, meanwhile, expressed concern about the overall effectiveness of a pilot program in supported employment that is intended to focus on the individual.

“Task Force members expressed concerns regarding the ‘person-centeredness’ of the program, the training requirements to participate, communications regarding the program, and overall effectiveness,” the report said.

Existing staff-to-client ratios prohibit individualizing job seekers’ daily and weekly schedules, according to the Task Force, although that comment did not refer specifically to the pilot program.  DDD also offers job-related services outside the demonstration program.

The Task Force recommended some of its members meet with state officials regularly to review data and develop strategies to ensure the success of the Person-Centered Supported Employment Performance Program.

OP-ED: Investment In DD Supports Critical To Prevent Harm To Fellow Rhode Islanders

By Linda N. Ward  

In his recent opinion editorial “Protect the most vulnerable in RI,” Senator Louis P. DiPalma rightly observes that “the budget is a policy document first, and a fiscal document second. It is a reflection of our priorities.” Knowing this, one sees a troubling pattern if you analyze the state of Rhode Island’s annual budget for supports to people with intellectual and developmental disabilities (I/DD) over the last decade.

Since the economic crash, many industries funded by our state have seen budgetary recovery or have grown far beyond their pre-2008 levels, and some have increased many times beyond those funding levels.  Budgeting for human services, however, has consistently failed to keep pace with the growth of costs over time.  Were state funding for I/DD (intellectual and developmental disability) supports to have been indexed to the consumer price index (CPI) in 2008, there would be 16% more funding ($34 million) for services than have been budgeted for 2019.

Rhode Islanders with disabilities and their families - our neighbors - are in jeopardy and depend on all of us to ensure that their basic health and safety needs are met. As a result of chronic underfunding the I/DD system has reached a tipping point. We must make critical investments to prevent the harm of thousands of Rhode Islanders and their families. The time to act is now.

Agencies that provide support to people with I/DD have not received an increase to their operating rates for 15 years. The rate of reimbursement to providers has remained the same, while all operating expenses have consistently increased.  In most cases, providers have operated at a loss for years. If we do not reverse this cycle, we will see further deterioration of services, and more people with I/DD will have difficulty accessing the services they need.

Simultaneously, we face a workforce crisis like none we have ever seen before.  A decade ago, our direct support professionals (DSPs), the staff who directly assist people with disabilities, were paid wages that were in most cases $3 - $5 above minimum wage.  Over time, the minimum wage has risen, but reimbursements have stagnated. While legislative efforts to raise DSP wages in 2016 and 2017 were laudable, they simply kept providers on par with that minimum threshold, and DSP wages are mostly at or slightly above minimum wage across RI.  With the continually growing demand for home and community based services, RI faces a particular problem because most agencies are currently unable to hire and maintain enough qualified staff.

The current approach to planning and budgeting for I/DD services in RI is not sustainable. We should not continually budget for less than what we know safe and adequate supports cost, and then make retroactive appropriations every year and claim that we are overspending.  Instead, let’s budget according to the actual needs of Rhode Islanders with I/DD and their families.  The proposed $18 million cut in funding to I/DD services (from current year costs) in the Governor’s proposed budget would cause harm to people with disabilities and their families.  The State of Rhode Island was once in the national forefront of services to people with disabilities. The Governor and legislature championed services for this vulnerable population. This is a critical moment for our state. Rhode Island must move to restore its place in supporting people with disabilities, their families and the thousands who make up the compassionate workforce. 

Linda N. Ward is Executive Director, Opportunities Unlimited, Inc. This commentary was jointly authored and signed by the executive directors of 23 agencies that provide supports to approximately 3,600 people with intellectual disabilities and developmental disabilities and their families, and that employ more than 5,000 Rhode Islanders. 

RI DD Public Forum Raises Questions About Balancing Next Budget; No Firm Path Ahead

  l to r: Tracey Cunningham, Brian Gosselin, Rebecca Boss                                                                                                                                                        Photos By Anne Peters 

 l to r: Tracey Cunningham, Brian Gosselin, Rebecca Boss                                                                                                                                                        Photos By Anne Peters 

By Gina Macris

Rhode Island’s developmental disability agency “has no intention at this time to cut any services” to clients or reduce rates to private service providers, the departmental director told some 30 people gathered for a quarterly public forum at the Pilgrim Senior Center in Warwick Feb. 26.

Rebecca Boss, director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), responded to a question from the audience about the budget proposal of Governor Gina Raimondo, who would slash a total of $21.4 million from developmental disability services, including $18.3 million in reimbursements to private providers.

Greg Mroczek, whose son and daughter both receive services from BHDDH, had asked about the budget in relation to the requirements of a 2014 federal consent decree.

 The Olmstead decree requires Rhode Island to transform its daytime services for adults with developmental disabilities from an over-reliance on sheltered workshops and segregated day programs to a system of integrated supports for employment and non-work activities that comply with the Americans With Disabilities Act.

Boss said that “presenting a balanced budget is a challenge” in any year. But it’s particularly challenging when the state faces a structural deficit of about $200 million in the fiscal year that begins July 1.   

Boss said that the governor, the Executive Office of Health and Human Services, and BHDDH are all committed to making sure that “the funding available to the dd (developmental disabilities) system is going to meet the needs of the individuals that we service.

“We believe we will have the services necessary for compliance with the consent decree,” she said. The consent decree covers daytime work and leisure activities but does not address residential services, the area where BHDDH has put an emphasis on cost-cutting in recent years.

Medicaid May Offer Path Forward  

Later in the meeting, Boss explained that the state is exploring the use of a Medicaid option that could help BHDDH balance its budget. The change, she said, also could achieve the programmatic goal of providing case management and coordination that is “free from funding conflicts and free from provider conflicts.” 

The Medicaid option involves the creation of a Health Home, the federal government’s name for an independent entity that would provide adults with developmental disabilities comprehensive care management, care coordination, health promotion, comprehensive transitional care, individual and family support, and referral to community and support services, Boss said.

For the first two years of operation, the Health Home would be supported with a 90 percent federal Medicaid match for every state dollar spent, Boss explained. For Rhode Island’s current fiscal year, Medicaid reimburses Rhode Island at a rate of 51.34 percent for every state dollar spent. For the fiscal year beginning July 1, the so-called Federal Medical Assistance Percentage (FMAP) will be 52.30.

The 90 percent federal match of the Health Home has the potential to bring in millions more in federal Medicaid dollars, but only for a limited period of time.

Boss described the Health Home approach as a “pretty good opportunity.” She asked Brian Gosselin, Chief Strategic Officer for the Executive Office of Human Services, to speak in greater detail about the Health Home option, but Gosselin demurred. 

Because creating a Health Home for developmental disabilities would involve seeking an amendment to the Rhode Island Medicaid State Plan, BHDDH must seek permission from the General Assembly before filing an application, Boss explained.  The request for that authorization to move forward with an application is in Article 14 of the governor’s proposed budget for the fiscal year beginning July 1.

It would be next January at the earliest that BHDDH could try out a Health Home for developmental disability services, and “that might be optimistic,” Boss said.

RI Experience With 'Health Homes' 

Rhode Island already has three Health Homes, Boss said; one for those with mental illness, another for those with opioid addiction, and a third for children and families, called CEDARR Services.

Having been involved in the planning for two of the three Health Homes,  she said, “I can tell you this is a heavy lift” that involves a complicated application process and fundamental system-wide changes in the state’s approach to coordinating developmental disability services. 

John Susa, who has a son with developmental disabilities and is a member of the Rhode Island Developmental Disabilities Council, relayed what he saw when he participated in the creation of CEDARR, one of the three Health Homes mentioned by Boss.

“I thought it was a great idea,” Susa said. “However, as time has gone on, I’m less certain that it was a good idea. I found a tremendous amount of money spent on case management,” he said; people “going to a lot of meetings, but the end result was a very limited amount of output in terms of the impact on the quality of life.”

Boss said she valued Susa’s perspective. “Whatever happened in CEDARR, we’ll try not to do that,” she said.

At the same time, Boss said “it’s not definite” the state will pursue the Health Home option.

She did not say what else might be done to balance the budget.

One Medicaid Rule At Odds With Need For Care

 Renee Doran

Renee Doran

Meanwhile, Renee Doran, whose adult daughter has developmental disabilities, said her daughter’s support person stayed with her when she had to go to the emergency room recently but was later denied pay for that day for the very reason that the worker was helping the young woman in the hospital setting and not in the community. 

As it turned out, her daughter was admitted to the hospital and Doran spent four days at her side. But what would have happened if she had been out of state or otherwise unavailable? Doran asked.

Heather Mincey, administrator in the Division of Developmental Disabilities (DDD), said the situation arose because community-based workers are paid from one Medicaid waiver while hospital-based workers are paid from another.

Mincey said the hospitals have the wherewithal to pay a developmental disability worker who must take a client to the emergency room.

And Boss said BHDDH can work with hospitals to let them know what services are needed. She said BHDDH often works with the state Department of Health, which oversees hospitals, and can “leverage that relationship” to make sure there is cooperation between hospitals and developmental disability services.

The public forum covered a gamut of topics, most of them related to the state’s incremental progress in meeting detailed requirements of the consent decree.

Focus on Supported Employment

Among other things, BHDDH announced an information session on employment-related services March 9 that will be tailored to the needs of individuals and families who do not get services from a particular agency but design their own programs.

Of about 3700 individuals receiving developmental disability services from BHDDH, roughly 500 are self-directed. Only about 8 self-directed individuals were able to participate in the first year of a performance-based supported employment program in 2017, according to Tracey Cunningham, the chief employment specialist at DDD.

Cunningham said the performance-based program is trying to attract more clients from the self-directed group in the current program year.

The session on March 9 for self-directed families and individuals will be from 9 to 11 a.m. in Room 126 of Barry Hall, 14 Harrington Rd., Cranston.

Anyone who is interested in information but can’t attend the session may call Cunningham at 462-3857, or email her at Tracey.Cunningham@bhddh.ri.gov

During 2017, 22 providers in the performance-based program offered employment services to 448 clients, Cunningham said. A total of 169 individuals found jobs, with only 24 of them losing employment, Cunningham said.

In the second year of the program, which offers enhanced performance payments, there are a total of 26 providers anticipating that they will be able to serve a maximum of 623 clients, she said. BHDDH has set aside $6.8 million for the performance-based supported employment program in the next budget.

But there have been difficulties training enough staff to provide supported employment services. BHDDH data presented at the forum showed a 31 percent vacancy rate in the full complement of staff – 234 positions – needed to maximize the program.  

Specially trained job coaches and other employment-related specialists for the performance-based program come from the direct care workforce, which is poorly paid and experiences high turnover.

The performance-based program is intended to boost the number of adults with developmental disabilities in regular jobs to help the state comply with the consent decree.

During 2017, the state met or exceeded the consent decree targets for employment in two of three categories: those who historically have spent their days in center-based care and sheltered workshop employees, according to figures provided by BHDDH.

There is one sheltered workshop left in Rhode Island and it will close sometime this year, said Tina Spears, the new consent decree coordinator.

The state has been lagging for some time in the number of young adults it has helped place in jobs. By now it was to have placed all of a total of 413 young adults recognized by the consent decree as having left school between 2013 and 2016.

At the end of 2017, the total number of  job holders in this young adult group was 177, according to the BHDDH data.  

 

 

RI ORS Official Queried About 28 In Olmstead Consent Decree Population Waiting For Services

By Gina Macris

The names of 28 adults with developmental disabilities, ostensibly protected by a 2014 federal consent decree mandating they receive job-related services, are nevertheless on a waiting list for assistance from the Rhode Island Office of Rehabilitation Services. That figure is 5 more than ORS reported as of Feb. 1.

 Joseph Murphy                   Photo By Anne Peters 

Joseph Murphy                   Photo By Anne Peters 

Joseph Murphy, vocational rehabilitation administrator for ORS, gave an update on the waiting list Feb. 13 when he attended the monthly meeting of the Employment First Task Force, a group created by the consent decree which is representative of individuals with developmental disabilities, their families, and community organizations working with them.

The waiting list had a total of 399 names as of Feb. 7, according to an ORS web page, with most of the affected individuals having a wide variety of significant disabilities.

Of that group, the 28 individuals at the center of the discussion at the task force meeting have developmental disabilities, physical or intellectual challenges that have been present since birth or childhood. These applicants for ORS services are supposed to have legal protection through the Olmstead consent decree against having any waiting period for services – a fact pointed out by Deb Kney, Director of RI Advocates in Action. The consent decree derives its name from the U.S. Supreme Court decision which clarified the integration mandate of the Americans With Disabilities Act. 

Murphy said the consent decree monitor and the Department of Justice undoubtedly are watching the situation closely, as is the judge in the case. Murphy referred to comments made from the bench Nov. 30 by Judge John J. McConnell, Jr. about his concerns that adequate state and federal funding be available to provide the services the consent decree requires. The next court hearing related to the consent decree is April 10.

Murphy said the monitor, Charles Moseley, and DOJ lawyers will visit Rhode Island Feb. 26 through 28th  to assess the latest developments in the implementation of the decree. 

When he notified the monitor of the waiting list, Murphy said, the monitor reacted with dismay. “He said, ‘Oh my,’ “ Murphy told task force members.  Regulations of the federal Rehabilitation Services Administration (RSA) require the states to set up a waiting list for vocational rehabilitation services when they can’t serve all eligible applicants.

In this case, the waiting list was triggered by the state’s unexpected loss of about $3 million in federal aid, which was re-directed to Texas in the wake of Hurricane Harvey.

The regulations require states to prioritize the order in which someone is removed from the list according to the degree of a person’s disability. Rhode Island’s so-called “Order of Selection” policy list has three levels of disability, but ORS is planning to amend the criteria for the highest priority category

Currently, applicants for ORS services in the highest priority category are those with mental or physical impairments that limit their ability to function on the job in at least three of seven different ways cataloged in state policy.  A proposed amendment would reserve the highest priority status for individuals those whose disabilities affect them in a minimum of four ways, according to an ORS spokeswoman. A public hearing on the matter will be March 8.

Murphy said that because of the consent decree, ORS is working with the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals to help protected clients find employment-related support elsewhere. 

The waiting list didn’t go into effect until Dec. 19, nearly three weeks after it was supposed to start, because changes in ORS policy needed formal approval from the federal RSA, Murphy said.

On the first day, there were already 324 names on the list, he said. Counselors “are in shock,”  Murphy said.

Murphy said the waiting list is “particularly awful because we were just starting to make headway” serving the consent decree population.

No one is affected who was already receiving services when ORS imposed the waiting list.

ORS receives $10.4 million from Title 1 of the Elementary and Secondary Education Act.But in the last few years it was able to supplement that basic grant with as much as $3.5 million in so-called “reallotment" funds  collected by the federal RSA from states that don’t meet their vocational rehabilitation obligations and re-distributed elsewhere.  For the federal fiscal year that  began Oct. 1, the re-allocation funding came to just $532,000.

While the reallocation money wasn’t set aside for clients with developmental disabilities, a lot of it went to help this group because that’s where the demand was, Murphy said. He characterized the consent decree as an “unfunded mandate.”

 

RI DDD Officials To Discuss Next Steps in Shift Toward "Person-Centered" System

The Rhode Island Division of Developmental Disabilities has reviewed comments from 16 public meetings held since May on its intention to move toward a “person-centered” system, built on the idea that the primary focus of the division’s services should be the needs and preferences of each adult it serves.

DDD officials will summarize the comments they received from the public and discuss the next steps Wednesday, Sept. 28 at Rhode Island College and Monday, Oct. 2 at the Community College of Rhode Island in Warwick. Here are the details: 

WEDNESDAY, SEPTEMBER 27

TIME: 5:00-7:00 pm

PLACE: Rhode Island College, East Campus

             Forman Center Auditorium 030 (parking behind the building) 

             600 Mt. Pleasant Ave., Providence, RI

MONDAY, OCTOBER 2ND

TIME: 1:00 – 3:00 pm

PLACE: Community College of RI, Knight Campus, Room 4080

              400 East Ave, Warwick, RI 

              

 

 

RI DD Workers To Get Average 36-Cent Hourly Pay Bump After Oct. 1; Retroactive Checks To Follow

By Gina Macris

Revised calculations indicate that the estimated hourly wage increase for those providing direct care to adults with development disabilities will be an average of 36 cents an hour, or 6 cents less than the 42 cents an hour that was originally estimated last spring.

 The 36-cent increase will push the average hourly rate, before taxes, to $11.50.

A memo to developmental disability service organizations from the state Division of Developmental Disabilities (DDD) dated Sept. 21 said the raises will be embedded in increased reimbursement rates to private service providers scheduled to kick in Oct. 1.

The lower figure resulted from unanticipated increases related to the number of hours of service that have been billed to the state for a variety of reasons, according to state Sen. Louis DiPalma, D-Middletown, first vice-chairman of the Senate Finance Committee and a close follower of developmental disability finances.

DiPalma likened the situation to the number of people getting served from a single pie.  In this case, the pie is the $6 million the General Assembly earmarked for raises. But the number of service hours, or slices of pie, has gone up. That means that the size of the portions, or the average increase, will be smaller. 

The DDD memo spelled out the factors in the calculations: “the numbers of consumers served, the provision of more individualized and costly services, the expansion of employment supports, as well as supplemental authorizations to address the acuity needs of consumers.” 

In a hearing chaired by DiPalma Sept. 21, Rebecca Boss, director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), said that a continued trend toward “higher acuity,” or greater individual need, will result in “unanticipated stressors in the budget.” 

Because the General Assembly specified in budget language that the raises were to be effective July 1, the private service agencies and their workers will get retroactivity. Although October paychecks will reflect the raise, retroactive payments covering July-September  “should be made available to DDOs (developmental disability organizations) by the end of October 2017 or early November 2017 for disbursement, “ according to the memo.

The current average hourly rate for direct care workers is about $11.14, according to a trade association, with the actual rate varying from one agency to another, depending on many factors, including benefits and other overhead costs. Employee-related overhead is included in the higher rates the state must pay the private agencies. The employers, in turn, put the raises into employee paychecks. 

Dianne Curran, RI Consent Decree Coordinator, To Leave Post Sept. 30, Citing Personal Reasons

By Gina Macris

 

                                                       This article has been updated .

 Dianne Curran                        Photo By Anne Peters

Dianne Curran                        Photo By Anne Peters

Dianne Curran will step down Sept. 30 after seven months as Rhode Island’s consent decree coordinator, a post considered critical to success of the state’s 2014 agreement with the U.S Department Of Justice to reform Rhode Island’s programs for persons with developmental disabilities.

 “I am sad to leave such a competent and hard-working team that is committed to improving the lives of individuals with I/DD (intellectual and developmental disabilities),”  Curran said in a statement which cited "personal reasons" for her departure. She did not elaborate.

Curran is the third consent decree coordinator to serve since the agreement was signed in April, 2014. Curran was preceded by Mary Madden, who served from January, 2016, until the end of March of this year, overlapping Curran’s first month on the job. The first consent decree coordinator was Andrew McQuaide.

A spokeswoman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) said there is an interim plan to cover the duties of the consent decree coordinator. The spokeswoman, Jenna Mackevich, confirmed Curran's upcoming departure on behalf of the Executive Office of Health and Human Services (EOHHS), where Curran reports to Health and Human Services Secretary Eric J. Beane.

Until the state finds a qualified successor to Curran, an cross-agency Consent Decree Management Team will shoulder the coordinator's duties, according to an EOHHS spokeswoman, who elaborated on the interim plan. The inter-agency team includes various division leaders and legal staff, who meet regularly, said the spokeswoman, Ashley O'Shea.

The position of the consent decree coordinator is very important in ensuring cooperation among state agencies with responsibilities in implementing the agreement, according to an independent federal court monitor, Charles Moseley. Historically, the various agencies of state government have had the reputation of acting as bureaucratic “silos.”

In addition to BHDDH, the Rhode Island Department of Education and the Office of Rehabilitation Services in the Department of Human Services share responsibility for transforming a system of sheltered workshops and adult day care centers into a network of integrated, community-based services, with an emphasis on regular jobs and personal choice, to comply with the ADA.

With Madden’s arrival early in 2016, Moseley successfully pressed the state to move the position of consent decree coordinator out of BHDDH to the EOHHS, which has authority over both ORS and BHDDH.

Curran has a long and varied career as a disability rights lawyer dating back to 1980, both in Rhode Island and Massachusetts. She is a former deputy director at Rhode Island Legal Services and former supervising attorney at what is now the RI Disability Law Center. Working much of the last 20 years in  Massachusetts,  she was deputy general counsel in the Department of Social Services and then held the same position at the Department of Elementary and Secondary Education

This article has been updated to include details of the interim plan for the state to keep up with the duties of the consent decree coordinator while the state searches for a replacement to Dianne Curran.

Two Pilot Programs, Two Approaches to Supported Employment, Aired at RI DD Task Force Meeting

By Gina Macris

(This article (been corrected.)

Between January and mid-August, about one in four Rhode Islanders with developmental disabilities who were enrolled in a new supported employment program landed jobs, with help from private service agencies funded through the state Division of Developmental Disabilities (DDD).

But there are signs of strain on the ability of these agencies to train the workers they need to continue to deliver results over the long haul.

 In the meantime, the Office of Rehabilitation Services (ORS) has started a much smaller pilot project , now in its second quarter of operation.

The two pilots take different approaches to funding employment-related supports for adults with developmental disabilities.

The DDD program adopts a fee-for service reimbursement model – based on the severity of a client’s disability - and a complicated billing mechanism that is similar to the one set up six years ago by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) for funding all developmental disability payments to private providers.

There is no provision for funding up front to support agencies’ costs for training workers to provide employment-related services.

The ORS project offers a flat rate of $7,000 per client, with $1750 up front so provider agencies can train and assemble a team of employment specialists. Providers are eligible for two additional quarterly payments of $1750 as long as they document the progress the clients are making.  A final payment  of  $1750 is awarded at the end of a year’s time only if the client has landed a job.

According to a recent report to a federal court monitor, state officials are evaluating both the ORS and DDD approaches to determine “what aspects of each model work for providers, what challenges exist, and how ongoing efforts of the two agencies can be coordinated.”

  Tracey Cunningham and Joseph Murphy

Tracey Cunningham and Joseph Murphy

Joseph Murphy, an administrator at ORS in the Department of Human Services, and Tracey Cunningham, Chief Employment Specialist in the developmental disabilities division at BHDDH, gave status reports on their respective programs at the monthly meeting of the Employment First Task Force Sept. 12.  

Cunningham said that between January and mid-August, the DDD program found jobs for 116 of a total of 425 adults with developmental disabilities who were enrolled. Nine others found jobs that didn’t work out, Cunningham said, and they are looking for better matches.

The program could take on an additional 92 clients, up to a maximum of 517, according to figures provided by Cunningham. However, service providers are having trouble lining up the trained staff to expand their rosters and want to focus instead on doing a good job with the clients they already have, Cunningham said.

Claire Rosenbaum, Adult Services Coordinator for the Sherlock Center on Disabilities at Rhode Island College, said one training course was cancelled recently for lack of enrollment. The Sherlock Center has a contract with the state to provide the needed training tuition-free.

In addition, the “self-directed” families, those who manage services independently for loved ones, are having a difficult time finding properly trained job developers and job coaches, Rosenbaum said. 

Cunningham said about 90 percent of “self-directed” families who seek supported employment services purchase them from private agencies.  But Rosenbaum said families are having difficulty identifying agencies able to help them.

Cunningham said three agencies are accepting clients from “self-directed” families:  Goodwill Industries, Work, Inc., and a new program called Kaleidoscope.

 Nicole Kovite Zeitler

Nicole Kovite Zeitler

Nicole Kovite Zeitler, a lawyer for the U.S. Department of Justice who monitors supported employment in conjunction with a 2014 consent decree enforcing the Americans With Disabilities Act (ADA), asked what was driving the providers’ inability to expand.

 Low salaries are the primary reason, said Donna Martin, executive director of the Community Provider Network of Rhode Island, a trade association representing about two thirds of the private agencies providing services in Rhode Island.

She said aging baby boomers also are creating an increased demand for direct care workers. Turnover is high – about 35 percent - and one in six jobs goes vacant in the developmental disability system, she said.

The General Assembly this year enacted the second consecutive raise for direct care workers. (Read related article here.)

But the increase, an estimated 42 cents an hour before taxes, is not expected to make a significant difference in the existing subsistence-level wages. Nor will it be any easier for developmental disability agencies to hire or keep new workers.

Meanwhile, the funding for the DDD supported employment program has been greatly under-utilized, even while the developmental disability service agencies have struggled to hire and train enough workers. (Read related article here.)                                 

The DDD program provides increased allowances for  job-seekers, based on the degree to which they lack independence,  but  most of the expenditures are set-aside for one-time performance bonuses to the agencies when:

  •  A job coach or job developer completes training
  •  A client gets hired
  •  A client remains employed for 90 days
  •  A client remains employed for 180 days.

Agencies receive $810 for each worker who has completed training. The remainder of the bonuses are arranged on a sliding scale, depending on the severity of the client’s disability, with the largest payments resulting from placement and retention milestones for those with the most complex needs.

Excluding any reimbursements for worker training, which were not part of the original design of the DDD program, the average maximum one-time reimbursement was initially projected to be $9,700 for young adults and $15,757 for older adults – those who left high school before 2013. Any updated figures were not immediately available.

The pilot operated by the state Office of Rehabilitation Services (ORS)  works with seven developmental disability service agencies to help a total of 49 clients find jobs. Five have had success so far, Joseph Murphy, program administrator, told task force members.

The ORS program, which receives technical assistance from Salve Regina University in Newport,  is now in the second quarter of the program year, while DDD program is in the third quarter. 

The ORS program considers a successful placement to be a minimum of ten hours a week in competitive, integrated employment in the community, although Murphy said Sept. 14 that it accepts clients no matter how many hours' work they seek. The ORS program offers a $1,000 bonus for job placements that exceed 20 hours a week and last at least six months. In the DDD program, a successful placement may involve fewer than 10 hours' work a week.

 Victoria Thomas

Victoria Thomas

The employment goal of the consent decree is an average of 20 hours a week of work at minimum wage or higher, although DOJ lawyer Victoria Thomas said there are no hourly employment requirements in the ADA.

“It just says people with developmental disabilities should have the option of integrated services,” she said.

The consent decree resulted from findings of the DOJ in 2014 that the state’s developmental disability services  over-relied on segregated sheltered workshops paying sub-minimum wages and non-work programs resembling day care.  As part of a system-wide overhaul, the state must support increasing numbers of adults with developmental disabilities in competitive employment in the community through Jan. 1, 2024.

The Employment First Task Force was created by the consent decree to serve as a bridge between state government and the community.

All photos by Anne Peters

This article has been corrected to reflect the fact that the up-front payment to providers in the ORS supported employment program is $1,750, one quarter of the total $7,000 allocation per client. In a clarification, Joseph Murphy, the program administrator, said it accepts clients no matter how many hours a week they seek competitive employment, even though a placement must be for at least ten hours a week to be considered successful for the purposes of the program.

RI DD Officials "Trying To Do The Right Thing," Says Judge In Review of 2014 Olmstead Consent Decree

By Gina Macris

Rhode Island’s efforts to implement a 2014 consent decree to help adults with developmental disabilities become part of their communities won plaudits from a federal judge July 28, althougth some officials indicated there’s still a long way before the changes permeate the system of state services. 

Judge John J. McConnell, Jr. said he is heartened “when a state entity is trying to do the right thing. It’s not the case where the state is acting in any way in bad faith.”

“Compared to about a year ago we are in a very different place,” he said.

In May, 2016, McConnell issued a 8-page order warning the state he would entertain contempt proceedings unless it moved forward with implementation of the consent decree, which at that time had been stalled for two years.

At the latest hearing, July 28, McConnell said there had been “positive movement” in the state’s efforts to carry out the requirements of the consent decree and urged state officials to “keep it up.” 

The judge acknowledged that sweeping changes in the leadership of state agencies responsible for the disabilities programs in recent months had left him feeling “quite nervous” about the state’s ability to comply with his orders, but he said “now it doesn’t feel that way at all.”

McConnell chose a relatively informal setting for the hearing, convening his review not in his courtroom but in the richly paneled library of the Beaux Arts federal building on Kennedy Plaza in Providence, and inviting participants around a conference table to remove their jackets.

A lawyer for the U.S. Department of Justice, Nicole Kovite Zeitler, and an independent court monitor, Charles Moseley, cited advances in the handling of bureaucratic issues that are pre-requisites for a turn-around in the system that will take years to accomplish. The areas they covered included:

  • The realignment of social work staff to better oversee changes in the way services are delivered
  • Additional steps intended to lay the foundation for an active, multi-faceted quality improvement effort involving the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) and the Office of Rehabilitation Services (ORS)
  • Improved communication with service providers, and with the publicThe expanded availability of training and information on the principles of individualized planning and personal choice that are at the heart of the consent decree – and the federal law behind it.

There were, however, signs that, for some individuals who depend on developmental disability services, change has not yet arrived.

For example, Zeitler said that of 22 private agencies participating in a pilot program to encourage job-placements, 42 percent –nearly half - say they can’t take new clients.

Moseley said he “regularly” gets reports from families who say that they have been turned down by service providers they sought out.

Although the pilot project in supported employment is billed as an “incentive” program, participating agencies report privately they operate at a loss for each client they place in a job.

The legislature allocated $6.8 million for supported employment in the fiscal year which ended June 30, but the pilot program did not begin operations until January, and in the first six months it paid out a total of about $122,000 to participating agencies, according to BHDDH calculations obtained by Developmental Disability News.

Rebecca Boss, the BHDDH director, acknowledged there are “challenges” to delivering those supported employment services but did not elaborate. A report from Moseley to the judge submitted the day before the hearing said there have been multiple meetings between state officials and the providers to discuss various factors affecting the supported employment program, including “operational issues that are reported to be impeding the ability of the organizations to meet their placement goals.”

McConnelland the consent decree officials at the table spent considerable time discussing a relatively low employment rate of young adults – the very group most likely to have had the broadest experiences in high school, including school-to work internships. 

The participants acknowledged that the employment rate for that group, 32 percent, was artificially depressed, because the number of individuals in the young adult category has grown dramatically, from 151 to 497, in the last nine months.  It takes time to find the right job, Zeitler said. 

But the monitor said in his latest report to the judge that progress in finding jobs for young adults “has been slow.”  Even if one analyzes only the original 151 young adults and discounts 60 of them who are not receiving BHDDH services, the employment rate is 51 percent, Moseley said in the report.

He recommended that the state contact each of the 60 not receiving services to make sure they know that supports are available if they need them.

Clients recently interviewed by Zeitler and DOJ colleagues said they were sometimes “bored” with their daytime non-work activities, Zeitler reported. The Americans With Disabilities Act (ADA) says persons who receive public supports must have personal choice in deciding what they do with their time, both for work and leisure.

But the way resources are currently invested does not necessarily promote “inclusivity,” noted Boss, saying the department is hoping to do some “rebalancing” of the way money is spent.

The individual choice mandated in the consent decree implies one-to-one or small group staffing, assuming that a few friends want to do something together in the community. But a fairly rigid regulatory structure currently in place doesn’t allow for such staffing unless clients are deemed to have extensive disabilities.  

The Division of Developmental l Disabilities is in the process of rewriting all its regulations to change from a system that assigns funding based on the severity of a disability to one that stresses individualization and personal choice, or“person-centered planning,” in accordance with the ADA and the consent decree.

As Moseley noted, the state must make these changes anyway to comply with the broader federal Medicaid Home and Community Based Rule (HCBS). The federal-state Medicaid program pays for all developmental disability services in Rhode Island.

Like the consent decree, HCBS derives its authority from the 1999 Olmstead decision of the U.S. Supreme Court. The Olmstead decision re-affirmed Title II of the ADA, which emphasizes its primary purpose to integrate those with disabilities into the mainstream of society and respects their individual choices on the degree to which they wish to participate. 

The last time BHDDH attempted regulatory reform along similar lines, in 2015, an internal BHDDH work group came up with recommendations that would have cost tens of millions of dollars. The proposed changes did not move forward.  

In his most recent report to the judge,  Moseley said that the effort to gain greater flexibility over existing funding “is a positive move, but additional steps need to be taken to map out a process for ensuring that funding supports integrated person-centered day services” that meet the standards of the consent decree.

Zeitler said management officials of direct service agencies seem to understand the principles of individualized, or “person-centered” activity plans, but some direct care workers “don’t speak the language.” 

Zeitler suggested that more training is in order.  Although the training is available, tuition-free, Kerri Zanchi, developmental disabilities chief at BHDDH,  indicated there was no “quick fix” to this problem, given the high turnover in the workforce.

Zeitler, meanwhile, praised the way Zanchi has moved around staff to make the most of available personnel, calling the reorganization “very creative.”  

Zanchi has added four workers to the case management unit, reducing caseloads from 205 to 152 per person. Two of the workers came from the unit that determines eligibility for services and two came from a separate group that assesses the support needs of clients once they are found eligible for services. 

Another worker has been tapped to serve in the newly created position of transition coordinator, to serve teenagers and young adults moving from high school to adult services. The Division of Developmental Disabilities has hired a new residential coordinator to address housing options for those who do not live with their families.

An outside quality improvement expert enlisted by Moseley has said in a report that "there is a significant commitment to change" at BHDDH and ORS to ensure high program standards are implemented across the board. 

"But the staff available to implement change are stretched very thin," wrote Gail Grossman in a report that is part of Moseley's latest filing with the court. Grossman continued: "Serious consideration needs to be given to the need for additional staff resources if DDD (the Division of Developmental Disabilities) and BHDDH are going to develop, manage and oversee a strong QMIS (Quality Management and Improvement System) structure."

BHDDH has a unit entitled quality improvement, but its scope is limited to investigations of neglect or abuse of vulnerable individuals.

Click here for the monitor's latest report to the judge.

Related articles: Judge Willing To Intervene In RI Budget Impasse

Supported Employment Program Falls Short Of Initial Goals in RI

Mixed Reviews on Employment From RI Consent Decree Monitor; Judge to Hear Compliance Status

By Gina Macris

Rhode Island has made “uneven”  progress in finding jobs for adults with developmental disabilities during the first quarter of 2017, according to an independent court monitor who oversees implementation of a 2014 federal consent decree intended to give adults with intellectual challenges more choice over how they live their lives.

The monitor, Charles Moseley, has filed his latest report in advance of a U.S. District Court hearing July 28 on compliance with the decree, which grew out of findings by the U.S. Department of Justice that Rhode relied excessively on  sheltered workshops paying sub-minimum wage and on segregated non-work programs.

Moseley said 62 individuals got jobs between January and March of this year, increasing the total number of placements to 544. That total is 340 more than the number of persons who had jobs 12 months earlier, according to data submitted by the state. Moseley said the number of placements for January through March of 2017 fell below an average of 85 placements per quarter for each of the three previous quarters. 

The first quarter of 2017 coincided with the launch of the state’s new incentive program for private agencies providing job-related services, but Moseley’s report did not make reference to that program. (Read related article.)  Complete employment statistics for April through June are not yet available.

Moseley’s report broke down the statistics according to three categories of adults with developmental disabilities who are protected by the consent decree: those who  had been in segregated sheltered workshops; those who had been in segregated day care facilities, and young adults who are at risk for long-term segregation after they leave high school. The consent decree also covers a fourth category of individuals; high school special education students who are at risk of segregation as adults. But the consent decree does not require the state to help them find jobs while they are still in school.

According to Moseley’s report, among the so-called “day target population”, a total of 262 had jobs on  March 31, an increase of 28 during the first quarter of the year. The total of 262 is more than twice the number the consent decree requires by Jan. 1, 2018. There are a total of 1,541 individuals in this category protected by the consent decree.

In the “sheltered workshop target population,” 9 individuals got jobs between January and March, bringing the total employed since Jan. 1, 2016 to 122. That number represents 81 percent of the consent decree benchmark of 150 placements for former sheltered workshop employees by Jan.1, 2018, according to Moseley’s report. At last count, there were a total of 658 current or former sheltered workshop employees protected by the consent decree.

Moseley said young adults, or members of the “youth exit target population,” gained 25 new job placements between January and March, for a total of 160 placements in that category. The consent decree requires job placements for all young adults the same year they leave high school.  Moseley said that with the current census of the “youth exit target population” at 497, the state had achieved only 32 percent of the number of jobs required by the consent decree for young adults.

 Source: RI Division of Developmental Disabilities

Source: RI Division of Developmental Disabilities

 

For the 12-month period ending March 31, the total number of individuals protected by the consent decree grew from 2,962 to 3,621, an increase of 659, which Moseley attributed to the state’s improved data collection.

Moseley has repeatedly emphasized individualized career development planning as an integral part of the job search. Equally important is individualized benefits counseling, which Moseley has said is necessary to allow individuals to make informed choices about whether potential jobs will adversely affect Medicaid and other types of government supports. 

The latest statistics show that about 63 percent of all persons protected by the consent decree have career development plans and about 67 percent of those who are employed have had benefits counseling, according to Moseley.

Friday’s court hearing will be at 10 a.m. in Room 310, the historic library of the federal court building in Kennedy Plaza in Providence.  U.S. District Court Judge John J. McConnell, Jr. will preside.  

Click here to read Moseley's entire report.

Four Years After Settlement, Former Workshop Still Segregates Adults With DD - Monitor

 photo by gina macris

photo by gina macris

Former Training Through Placement building at 20 Marblehead Ave., North Providence RI

By Gina Macris

A federal judge has taken the state of Rhode Island to task for failing to keep track of a former sheltered workshop that has continued to segregate adults with developmental disabilities, despite a landmark integration agreement four years ago that seeks to transform daytime services for those with intellectual challenges.

An order by Judge John J. McConnell, Jr. of U.S. District Court sets strict deadlines between the end of June and the end of July for specific steps the state must take to ensure that all clients of the former sheltered workshop lacking jobs or meaningful activities begin to realize the promise of the 2013 agreement.

The so-called Interim Settlement Agreement of 2013 focused primarily on special education students at the Birch Academy at Mount Pleasant High School and adult workers at Training Through Placement (TTP), which has become Community Work Services (CWS.)

The former sheltered workshop used Birch as a feeder program for employees, who often were stuck for decades performing repetitive tasks at sub-minimum wages – even when they asked for other kinds of jobs. Involved are a total of 126 individuals, according to McConnell’s count.

In 2014, after a broader investigation by the U.S. Department of Justice, the state signed a more extensive consent decree covering more than 3,000 adults and teenagers with developmental disabilities. The state promised to end an over-reliance on sheltered workshops throughout Rhode Island and instead agreed to transform its system over ten years to offer individualized supports intended to integrate adults facing intellectual challenges in their communities.

Together, the companion agreements made national headlines as the first in the nation that called for integration of daytime supports for individuals with disabilities, in accordance with the Olmstead decision of the U.S. Supreme Court. The Olmstead decision re-affirmed Title II of the Americans With Disabilities Act, which says services must be provided in the least restrictive setting which is therapeutically appropriate, and that setting is presumed to be the community.

McConnell’s order is the latest and most forceful development in a story that highlights not only the failings of the former sheltered workshop, Training Through Placement (TTP), but the state’s lack of a comprehensive quality assurance program for developmental disability services system-wide.

The former sheltered workshop run by CWS at 20 Marblehead Ave., North Providence, was closed by the state on March 16 on an emergency basis because of an inspection that showed deteriorating physical conditions. Individuals with developmental disabilities were “exposed to wires, walkways obstructed by buckets collecting leaking water, and lighting outages due to water damage,” according to a report to the judge. At that point, CWS had been working under state BHDDH oversight for about a year, because of programmatic deficiencies, according to documents filed with the federal court.

CWS is a program of Fedcap Rehabilitation Services of New York, which had been hired by then-BHDDH director Craig Stenning to lead the way on integrated services for adults with developmental disabilities at TTP in the wake of the 2013 Interim Settlement Agreement. Stenning now works for Fedcap.

With the CWS facility closed by the state, the program resumed operations on March 21 in space provided by the John E. Fogarty Center in North Providence under terms of a  probationary, or conditional, license with state oversight, according to a report of an independent federal court monitor overseeing implementation of  the 2013 and 2014 civil rights agreements in Rhode Island that affect adults with developmental disabilities.

The monitor said the state licensing administrator for private developmental disability agencies also notified the CWS Board of Directors and the Fedcap CEO of the situation, making these points:  

  • the state was concerned about unhealthy conditions of the CWS facility
  • ·the agency failed to notify the state of the problems with the building
  • CWS failed to implement a disaster plan
  • ·The CWS executive director had an “inadequate response” to the state’s findings.

The letter to the Fedcap CEO also said that CWS had been providing “segregated, center-based day services” rather than the community-based programming for which the agency had been licensed.

Summarizing the status of the 2013 Interim Settlement Agreement, the monitor, Charles Moseley, concluded in part that the Providence School Department and the Rhode Island Department of Education have continued to improve compliance through added funding, an emphasis on supported employment, staff training and data gathering and reporting.

Overall, the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, (BHDDH) the Executive Office of Health and Human Services, (EOHHS) and the state Office of Rehabilitation Services (ORS) also have made progress, Moseley said, citing budget increases, new management positions, and programmatic changes he has mentioned in various status reports on the statewide consent decree.

However, progress for clients of the former TTP workshop “appears to have plateaued and possibly regressed,” Moseley wrote, and for that he faulted the successor agency, CWS, and the lack of sustained oversight on the part of BHDDH. 

While some former sheltered workshop employees at TTP did find work after the Interim Settlement Agreement was signed in 2013, “the number and percentage of integrated supported employment placements has remained essentially flat for the last four years,” he said.

Efforts to reach CWS and Fedcap officials were unsuccessful.

In mid-March, CWS  reported that 30 of 71 clients on its roster had jobs. Of the 30 who were employed, 13 with part-time jobs also attended non-work activities sponsored by the agency. In addition, 41 clients attended only the non-work activities.

In early April, Moseley and lawyers from the DOJ interviewed the leadership and staff of CWS and some of the agency’s clients in their temporary base of operations at the Fogarty Center. Serena Powell, the CWS executive director, was among those who attended, Moseley said.

The leadership “revealed a lack of understanding of the basic goals and provisions of the state’s Employment First policy and related practices,” Moseley said in his report.

Rhode Island has adopted a policy of the U.S. Department of Labor which presumes that everyone, even those with significant disabilities, is capable of working along non-disabled peers and enjoying life in the community, as long as each person has the proper supports.

“This lack of knowledge and understanding appeared to extend to the basic concepts of person-centered planning (individualization) and program operation,” Moseley said, citing the names of specific protocols used by state developmental disability systems and provider agencies “across the country.”

Moseley said some CWS staff do not have the required training to do their jobs.

Some job exploration activities have consisted of “little more than walking through various business establishments at a local mall,” Moseley said, explaining that they were not purposeful activities tailored to individual interests and needs.

Moseley said he interviewed three clients of CWS and they were “unanimous in their desire to have a ‘real job’ in the community and to be engaged in productive community activities that didn’t involve hanging out with staff at the mall.

“All three persons reported that they were pleased to be out of the CWS/TTP facility and to have opportunities to go into the community more often. Two of the three expressed an interest in receiving services from a different service provider,” Moseley said.

The state has had four years to work on compliance with the Interim Settlement Agreement and the Consent Decree. During that time, BHDDH has seen three directors and its Division of Developmental Disabilites (DDD) has had four directors, including an outside consultant who served on an interim basis part of the time officials conducted a search that led to the appointment of Kerri Zanchi in January.

Between mid-February and early May, there was a separate upheaval in the leadership of the Executive Office of Health and Human Services, which had taken charge of the state’s compliance efforts in connection with the 2013 and 2014 civil rights agreements.

In a statement to the court, Zanchi alluded to all the turnover, saying that “progress has been challenged due to changes in internal and external leadership impacting stability, communication, resources, accountability, and vision.” 

Zanchi suggested that budget increases and considerable effort among BHDDH and ORS staff during the last year to improve compliance nevertheless have not been enough to make up for the previous three years of inaction.

Among other things, there is no consensus across the network of private service providers – some three dozen in all – “regarding the definition and expectation of integration,” Zanchi said.

DDD is responding by establishing “clear standards, training and monitoring,” she said. McConnell’s order required DDD to complete “guidance and standards for integrated day service” by June 30 and allowed another month for the document to be reviewed and disseminated to providers.

Zanchi said the state now has an “extensive quality management oversight plan” with CWS that involves DDD social workers, who are actively supporting CWS clients and their families. These same social workers also have average caseloads of 205 clients per person, according to the most recent DDD statistics.

Zanchi agreed with Moseley, the court monitor, that “current review and monitoring does not constitute a fully functioning quality improvement program.”

Moseley said that DDD’s quality improvement efforts “are seriously hampered by the lack of sufficient staff.” He called for “additional staffing resources” to ensure quality, provide system oversight and improve and ensure that providers get the required training.

Zanchi said an outside expert in interagency quality improvement is working with the state to develop and implement such a fully functioning plan. McConnell gave the state until July 30 to have a “fully-developed interim and long-term quality improvement plan” ready to go.

Of the 126 teenagers and adults McConnell said are protected by the 2013 Interim Settlement Agreement, 46 need individualized follow-up. Of the 46, 34 have never been employed, including 24 former TTP workers and 10 current Birch students or graduates.

The judge reinforced the monitor’s repeated emphasis over the last two years on proper planning as the foundation for producing a schedule of short-term activities and long-term goals that are purposeful for each person, whether they pertain to jobs, non-work activities, or both.  

These planning exercises, led by specially trained facilitators, can take on a festive air, with friends and family invited to share their reminiscences and thoughts for the future as they support the individual at the center of the event.

McConnell’s order said the state must ensure that “quality” planning for careers and non-work activities is in place by July 30 for active members of the protected class who want to continue receiving services.

Among CWS clients, the agency reported that 10 have indicated a reluctance to go into the community, perhaps because they feel challenged by the circumstances.

Moseley cited a variance to the Employment First policy developed by the state to cover those who can’t or don’t want to work, for medical or other reasons. Moseley’s report said he approved the variance in 2015, but it hasn’t been implemented. He acknowledged that it was difficult to understand.

McConnell’s highly technical and detailed order requires the state to implement a “variance and retirement policy” by June 30 “to discern specifically those who do not identify with either current or long-term employment goals.” 

McConnell also ordered the state to fund an additional $50,000 worth of training from the Sherlock Center on Disabilities at Rhode Island College so that those who work with adults with developmental disabilities can give them individualized counseling about how work would affect their government benefits.

The monitor has repeatedly cited a dearth of individualized benefits counseling. In his latest report, he wrote that in interviews May 11 and May 12, high school students at Birch, their parents, staff, and others expressed the false conviction that students could work no more than 20 to 25 hours a week without compromising their benefits.

"This finding underscores the importance of individualized benefits planning for this population to ensure that students are able to take full advantage of Social Security Act work incentives that may enable them to work more than 25 hours per week while maintaining their public and employer benefits," Moseley said.

The monitor is expected to evaluate compliance with the deadlines in McConnell's latest order in a future status report.

 

RI Budget Goes Into Limbo Over Car Tax Contingency Amendment Inserted By Senate

By Gina Macris

The $9.2 million Rhode Island budget, which appeared poised for final passage by the Senate on June 30, now hangs in limbo on the first day of the new fiscal year, July 1, a casualty of a dispute between the Speaker of the House and the President of the Senate over the Speaker’s signature car tax relief plan.

The situation means that by law, the levels of spending approved by the General Assembly a year ago remain in effect until the General Assembly resolves the Fiscal Year 2018 budget – and no one knows when that might be.

For Rhode Islanders who are elderly or have disabilities, the one exception to the spending freeze is separate legislation, on its way to the governor, which restores their free bus passes on the Rhode Island Public Transit Authority, a $5 million item.

But increases to direct care workers in both developmental disabilities and home health care fields remain up in the air. So do millions of dollars in reimbursements to private developmental disability service agencies, some of them for expenses already incurred in the fiscal year that ended June 30.

The dispute between House Speaker Nicholas A. Mattiello and Senate President Dominick Ruggerio, centers on a Senate amendment which would freeze the level of Mattiello’s car tax relief if, at any time during the six-year phase-out, the state has to dip into its rainy day fund.

During the floor discussion, senators said the state needed a safety net in the event the state cannot ultimately afford the overall $221 million cost of the phase-out, especially in light of uncertainty in Washington over billions of dollars in proposed cuts to Medicaid nationwide. Those drastic reductions would deal Rhode Island a severe blow in many human service programs, including those supporting adults and children with developmental disabilities.

The Senate passed the amendment, with the rest of the budget that had been approved by the House, with just hours remaining in the old fiscal year.

But by that time, Mattiello had adjourned the House and sent the members home. He gave no indication when he might call the House back into session.

In a statement, he said “Despite the House, the Senate and the Governor reaching agreement on a responsible and balanced state budget, I learned today that the Senate was likely to amend the budget on this, the last legislative day. This would have resulted in a long and unproductive night for the members and the public.  I urge the Senate to honor the original agreement and pass the state budget.”

 

Mattiello: RI Direct Care Workers Have Been Heard

By Gina Macris

During recent deliberations on the state budget that emerged from the Rhode Island House Finance Committee last week, legislators considered very carefully testimony about the plight of the state’s most vulnerable citizens and those who care for them, particularly with respect to nursing homes, House Speaker Nicholas Mattiello said in a briefing June 20.

 Mattiello                         RI state PHOTO

Mattiello                         RI state PHOTO

The Finance Committee’s budget prevents any further reductions to Medicaid reimbursement rates to hospitals and nursing homes and commits $11 million in federal and state Medicaid funds to raise the pay of home health care aides and those providing direct support to adults with developmental disabilities.    

“Thank you for the viewpoint,” he said of those who testified for the direct care raises, and we’re glad that in these difficult fiscal times we were able to accommodate that,” he said.

Mattiello’s remarks signaled a growing awareness over the last year about poverty-level wages and high turnover which has destabilized the direct care field and, many say, affected the quality of care.

Along the same vein, the proposed $9.2 billion spending package approved by the House Finance Committee promises to restore free bus passes for the elderly and disabled, at a cost of $3.4 million a year for the next two fiscal years.

The compromise budget that will go before the full House June 22 also puts $26 million into Mattiello’s signature car tax phase-out, enabling 150,00 vehicles to fall off the property tax rolls in the fiscal year that begins July 1. And it partially funds Governor Gina Raimondo’s free tuition plan, allowing two years of free attendance at the Community College of Rhode Island for students who maintain a 2.5 grade average and meet other conditions.

Mattiello said he was proud of the budget, which uses a variety of approaches to close a $134-million revenue gap and still manages to deliver on promises made to Rhode Islanders.

“I didn’t say I was happy with this budget. I said I was very proud of this budget,” Mattiello said.

“You work with what you have and you maximize the benefit to the taxpayers. That’s exactly what we did,” Mattiello said.

State Rep. Joseph N. McNarmara-D-Warwick, echoed Mattiello’s remarks, saying he was particularly proud of the “core values we have represented as the majority of Democrats” and "have defended in a tough budget,” including free tuition, raises for direct care workers and the prevention of erosion of reimbursements to hospitals and nursing homes.

But Mattiello interjected, “I’m going to stop you, Joe. This is not a Democratic caucus. These are the values of the House of Representatives.” McNamara, the chairman of the House Committee on Health, Education and Welfare, also chairs the state Democratic Party.

As for the cost-cutting that must be done to balance the budget – including $25 million in unspecified reductions – Mattiello said: “We conferred with the Governor and the Senate. The Governor believes that although this will be difficult, it’s attainable and we agreed it can be done. “

While the budget uses one-time revenue to close some gaps, it will be paired with one-time expenses and will not add to the state’s structural deficit, Mattiello said.

Even though revenues are lower than expected this year, the economy seems to be going in the right direction, with unemployment down to a level not seen since before the recession of 2008, Mattiello said.

“This is our year to continue our momentum,” he said.  “We’re not going to tax our way” out of the revenue shortfall, “we’re not going to cut our way out of it,” but “we hope to grow our way out of it” as the economy continues to improve.

OP-ED: Trump's Trump's Medicaid Plan Would Force Draconian Choices On People With DD

By Maureen Gaynor

 Maureen Gaynor (updated photo)

Maureen Gaynor (updated photo)

Dread. Our President has embedded dread into my vision of what my daily existence may be like in the near future. You see, I am a woman who has severe athetoid cerebral palsy.  I depend on people to assist me in just about every physical aspect of my life.  More about my own situation in a moment, but I am not alone in this feeling of dread.

There are about 4,200 people in Rhode Island who have developmental disabilities, according to the state, and we all depend on Medicaid, which supports programs to assist us in living our lives as inclusively as possible.

But President Trump has proposed a budget that would decimate Medicaid.  By capping Medicaid spending, President Trump would cut an estimated $610 billion to $1.3 trillion over the next decade, with the higher figure also taking into account the effects of the health care bill that recently passed the House. When I look up ‘decimate’ in the dictionary, it means to “kill, destroy, or remove a large percentage or a part of.” That is a word used to describe wars, plagues and atrocities that should be avoided at all costs to preserve human life. Let’s take a good, hard look at the very real effect these astonishing budget cuts would have on people with disabilities, starting with my own case.

I have done my hard work getting where I am today.  I come from a hard-working family that respects hard work and also values the concept of the family down to the core. My parents, who never got degrees but valued education, expected all of their four children to go to college, and they succeeded in that goal.  I was the one who drew the short straw when I was born a half century ago.  But I have learned not to let my cerebral palsy define me. And I wasn't given a free pass out of being successful.  I wanted to be successful, and that drive is even stronger today.  I became convinced that I could design buildings and residential homes to be more accessible for the disability community. In 1990, I graduated from New Hampshire Technical College with a General Associates degree in Building Construction Technology, followed by graduating from Roger Williams University with a Bachelor of Science degree in Architectural Studies. Unfortunately, jobs have been sparse since 1993.  Given my education and experience in the construction field, and my love in designing kitchens, I am pursuing work in kitchen design.

But my cerebral palsy DOES limit what I am able to do, physically, for myself. As I said, I depend on people to assist me in just about every physical aspect of my life. Activities like eating meals, dressing, showering, brushing my teeth, doing laundry, using the bathroom and a multitude of other activities I need assistance completing. I need someone to adjust the head pointer I am using to write this article.  All of these activities of daily living are needs—my needs are not “luxuries.”  I need to eat, or I will starve.  I need to use the bathroom, or I will get severely ill.  I need to shower, or I will smell.

President Trump, along with his Secretary of Health and Human Services, Tom Price, want to impose Medicaid Block Grants on all states, based on each state’s per capita ratio.  This means the federal government will allocate a pre-determined Medicaid budget for each state.  Each state must work within that budget.  Each state has its own Medicaid budget.  People with disabilities have different levels of need.  How is such a strict Medicaid budget going to cover all of the variable needs of people with disabilities?  President Trump has difficulty understanding the Constitution, let alone the needs, and the dreams, of people with disabilities.  I am convinced that President Trump hasn't sat down and had a genuine conversation with a person with a developmental disability.  Dread sets in once again.

So, what would my life under a Medicaid Block Grant system?  My dread comes from the expectation that services will be severely cut back, because the state will not be able to make up for the federal cutbacks and will have to stretch out the available dollars by reducing services to everyone. Here’s what I fear will happen to me:

 My supports to find employment will immediately disappear.  My hopes and dreams centered around working as a kitchen designer would be dashed because I wouldn't have any community hours.  Instead, that money would have to be spent on supports for someone else to get out of bed.

My daily community supports would cease. Getting out of the house would be another “luxury” for people with disabilities. If I cannot go to the supermarket, how would I buy groceries?  Well, I guess I will have to find someone who will shop for me.

If these devastating Medicaid cuts pass and my services are reduced, I would need to stay in bed three hours longer each day,  because I can’t get up on my own and there would be no one to help me.  I would have to go at least 14 hours without eating.  By the time I would get up, I’ll probably eat around 1 pm.  What would I eat—breakfast or lunch?  I would have to eat a lot because I would only have time to eat two meals a day.

 If I’m not mistaken, don't prisoners get three meals a day?  I think they do.  I, who never committed a felony, who was born with a brain disorder, and who has graduated college from Roger Williams University will be only allowed to eat two meals a day because President Trump dreams of building this “magnificent” wall on the Mexico border.

Can somebody tell me where the fairness in this scenario?  If I was face-to-face with the President, Tom Price or Paul Ryan, Speaker of the House, could anyone of them explain to me where the fairness is?  I don't think anyone of them could give a reason why it is more important to have a border wall rather than providing people with disabilities adequate time to eat three meals a day, and to have a life that they can call their own.

My biggest fear is the re-emerging of state institutions if these Medicaid cuts go through.  Medicaid money would run so thin that there will not be any other choice to care for the vulnerable people with disabilities by re-creating “collective housing” to care for their basic needs.

We cannot allow this administration to turn back the hands of time on the progress the disability community has made in the last century. The mindset of this administration is deplorable. We must rise up as a country and recognize all people must be treated equal.

Maureen Gaynor, of Smithfield, RI, is a social activist. She was one of four people who were arrested in Sherborn, Mass. on Inauguration Day, Jan. 20, after a reading of grievances against President Trump and a peaceful procession that blocked a road, prompting police to stop traffic. Gaynor can be reached at mogaynor@cox.net

RI Legislation Aims For Greater Accuracy And Transparency In Budgeting BHDDH, DCYF Costs

By Gina Macris

Companion bills in the General Assembly would require cost estimates for services to adults with developmental disabilities and children in state custody to become part of Rhode Island’s semi-annual Caseload Estimating Conference, a key budgeting guide. 

The bills, sponsored by Sen. Louis DiPalma, D-Middletown; and Rep. Teresa A. Tanzi, D-Narragansett and South Kingstown; specify that the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) and the Department of Children, Youth, and Families. (DCYF) would submit all their service costs, funded through Medicaid, to the Caseload Estimating Conference. 

Both BHDDH and DCYF have been plagued by chronic deficits. At BHDDH, a 2014 federal consent decree enforcing the 1999 Olmstead decision of the U.S. Supreme Court is putting additional demands on the developmental disabilities budget.

The executive branch prepares BHDDH budgets on the basis of “target” figures set by the Office of Management and Budget. In the past, BHDDH officials have said that the targets are not enough to cover actual service costs. This year, Governor Gina Raimondo accepted BHDDH figures in submitting her budget proposal to the General Assembly.

In a statement, DiPalma said, “The legislation is about honest and transparent budgeting. We need an accurate accounting of how many individuals we are serving in these vital programs, so that our budget reflects the associated costs, or makes program adjustments, or both.” 

He said about 3,000 children and teenagers are in DCYF care and roughly 4,000 adults with developmental disabilities depend on services from BHDDH.

Tanzi said, “Accurate caseloads will ensure the General Assembly is able to fully understand and appreciate the budgetary requirements of the agency to meet their obligations to our state’s vulnerable children and families. This legislation is about caring for our most vulnerable citizens but doing so in the most responsible way for the taxpayers.”

Medicaid accounts for about 31 percent of the state’s budget, according to the House Fiscal Office. That is roughly $3 billion in expenses annually, with each state dollar matched by slightly more than one federal dollar. Of all Medicaid funds, BHDDH spends 12.3 percent of and DCYF accounts for 1.4 percent.

In addition to adding BHDDH and DCYF to the Caseload Estimating Conference, DiPalma’s and Tanzi’s bills spell out the managed care reporting requirements of EOHHS in greater detail.

Current law allows agencies other than DHS and EOHHS to participate in the Caseload Estimating Conference but does not require them to contribute data.  It is not clear why DCYF and BHDDH have not been included in the Caseload Estimating Conference in the past.

The Caseload Estimating Conference runs back-to-back with the Revenue Estimating Conference in November and May. There are three principals; the House and Senate fiscal advisors and the state budget officer, who reach agreement through consensus on the latest estimates for revenue and for expenses in the human services, including Medicaid and a general public assistance program of about $1.5 million.

The governor relies, in part, on the November conference report to prepare the budget that is submitted to the General Assembly in January. The House and Senate use the results of the May conference as a basis for finalizing budget negotiations. 

The bills: S 0266 and H 5841

 

Budget Testimony: Need For DD Raises Critical, Stable Services Demand Double Current Funding

 tom Kane                         RI capitol tv Image

tom Kane                         RI capitol tv Image

By Gina Macris 

This article has been updated. 

As others had done before him, Tom Kane told members of the House Finance Committee that he “could not stress enough” the importance of the General Assembly approving an additional $6.1 million to lift the poverty-level pay of some 4,000 front-line employees of private agencies under contract with the state to care for adults with developmental disabilities.  

At the same time, Kane, CEO of AccessPoint RI, one of those private agencies, said in a hearing April 11 that the overall funding for developmental disabilities is only about 50 percent of what is needed for service providers to regain the financial stability they once had and help their clients receive the supports they need and deserve. 

All together Governor Gina Raimondo seeks General Assembly approval for raising the currently enacted developmental disability budget of $246.2 million by $10.5 million over the next 14 months, with $4.4 million of the increase applied before June 30. Another $6.1 million would be added for the fiscal year beginning July 1, for a total of $256.7 in the fiscal year ending June 30, 2018.

Kane explained to members of the Finance Committee’s Human Services Subcommittee, led by Rep. Teresa A. Tanzi, D-South Kingstown and Narragansett), the different kinds of pitfalls he saw in Raimondo’s attempts to offset the cost of the raises by cutting expenses in other areas – or not covering some necessary spending at all.  

For example, Kane said, AccessPoint had a $107,000 increase in health insurance rates this year. ”There is no money” to cover that cost, he said. “We spend almost $1.2 million in health insurance for 158 people,” he said.  Kane said he could not expect his employees, many of whom make less than $11 an hour, to contribute more to health insurance, so other adjustments were made. He did not elaborate. 

“But at some point there’s going to be a collision between all these additional costs” and direct care workers, Kane said. In written remarks, he said the “cost of other insurances, building maintenance, rent, vehicles, fuel and office supplies continue to increase, adding to the financial strain on organizations. These costs should not be seen as extraneous. They directly relate to our ability to focus our full attention on good quality service provision,” Kane said.

He also zeroed in on some line-item savings that Raimondo has budgeted to offset the cost of the second consecutive raise for direct care workers, particularly the plan to reduce group home costs by $2.1 million in state funds. That ongoing effort, driven by economic and policy considerations, aims to move group home residents to less costly shared living arrangements in private homes - a process that requires clients to actively agree to the change. 

During the transition, there must be a consideration for maintaining the living arrangements of the individuals left behind in the group homes, Kane said, recalling a case in which two of four people in one AccessPoint home opted for shared living. Because the agency could not afford to keep the house operating with only two residents, it sought supplemental funds from the Division of Developmental Disabilities for a few months to cover outstanding expenses while it figured out its long-range plan, Kane said. The home finally closed, he said.

The example illustrates how, during a transition, “you are balancing two systems at the same time, “ Kane said.

“If you don’t pay attention to the current system with the same amount of zeal as the new system, people will get lost,” he said.

In fact, the state so far has been unable to realize much savings from the emphasis on shared living, only $100,000 of a target of $2.6 million in state funds in the current fiscal year, according to officials of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Since last July, a total of 48 group home residents have committed to shared living. That figure is 18 shy of a target of 66 individuals for the fiscal year ending June 30.

Kerri Zanchi, Director of the Division of Developmental Disabilities, said that of the 48, 28 have moved since December, when the division began addressing issues that were barriers to shared living arrangements, like a need for physical modifications to some houses to make them more easily accessible, as well as extra medical and behavioral supports needed in the host homes. She said the division is also considering a range of other alternatives to group home living.

Ultimately, Kane said, a budget is a “representation of the values of our state.”  The care for people with disabilities and the salaries paid to caregivers either will reflect the dignity and respect afforded valuable members of society, or they won’t, Kane said.

 “I understand you have a lot of very difficult decisions to make,” he told the legislators, “and the numbers (revenues) aren’t looking great this year, which are going to make all those decisions even tougher.”

But Kane asked them to look at historical spending for developmental disability services, which he said are now only $9 million more than they were in 2010. In the meantime the demands of a 2014 federal consent decree with the U.S. Department of Justice, as well as new Medicaid rules for Home and Community Based Services (HCBS), make the job of supporting individuals with disabilities much more complex and expensive, he said. 

Traditionally, he said, support has been provided in “congregate” settings, or facilities “where you have groups of ten people with one staff person. “

“Under the consent decree they have to be either at a job or in the community,” he said. Those settings demand ratios of one staffer for each client, or no more than three clients, depending on the circumstances, Kane said.  In addition, the consent decree requires job coaches to be trained to a specific certification. and trained workers will demand higher pay, Kane said.t

The latest statistics indicate the current average pay for direct care workers is $11.14 an hour, before taxes, a figure that reflects a raise of about 32 cents effective last July 1, according to Donna Martin, executive director of the Community Provider Network of Rhode Island (CPNRI), a trade association which represents 25 of some three dozen private providers of developmental disability services.

The hourly reimbursement rate the state pays the employers for direct care workers is $11.91, which includes both wages and most – but not all – of employers’ actual costs for overhead and fringe benefits. That figure is still lower than the hourly reimbursement rate of $12.03 the General Assembly authorized in July, 2011  at the same time it cut a total of $24 million for private provider services, according to a chart prepared by James Parisi of the Rhode Island Federation of Teachers and Health Professionals.

In October, 2011, three months after the General Assembly acted, BHDDH reduced the actual reimbursement rate to $10.66 an hour, according to Parisi’s calculations.  Since then, the rate has been climbing incrementally to its current level of $11.91.

Parisi represents workers at the Trudeau Center in Warwick, where the starting salary is now $10.71 an hour.

Tori Flis, a service coordinator at one agency, which she did not name, said that even though there has been a slight increase in wages in the last year, the turnover is “just as high.”

Martin, of CPNRI, put the average turnover at one out of three workers a year, or 33 percent, although it varies from one agency to another.  Employers are unable to fill one out of six vacancies, and it costs an agency an average of $4900 every time it must search for a replacement and train a new hire, Martin said.  

Markella Carnavalle, who works at Trudeau, described the impact that turnover can have on individuals with developmental disabilities.

One client, who had grown attached to a worker who had to leave, was “crying for weeks,” she said.

That person had behavioral issues and didn’t want to work or eat, Carnavalle said. The client believed the worker left because “they didn’t want to be with me,” Carnavalle said, but “you can’t say the person needed more money. They don’t look at it that way.”

“You become a part of their lives and they become a part of yours” over time, Carnavalle said.

Flis, meanwhile, said the workers she supervises all have two and three jobs to make ends meet. Some work as many as three consecutive 12-hour shifts at different agencies – a total of 48 hours straight.

Those kinds of conditions lead to burnout, abuse and neglect, Flis said. The only reason she can afford to work one job at Trudeau is that she is married to a teacher who has a good salary and fringe benefits, including a pension, Flis said.

In another part of the current budget,  BHDDH officials and the legislators disagreed on whether there is funding for a developmental disabilities ombudsman, a position approved by the General Assembly last year after a woman died in a state-run group home. The state-run residential system is separate from the private system. 

The legislators and a member of the House fiscal advisory staff, Linda Haley,  said a total of $170,000 had been included in the BHDDH budget for the position.

Representing BHDDH, Christopher Feisthamel, the chief financial officer, and Zanchi, the developmental disabilities director, both said they understood it was an “unfunded mandate.”  Haley and BHDDH officials spoke informally after the hearing but reached no agreement on the status of the position.

(This article has been updated to correct the total cost of health insurance for AccessPoint RI, which is $1.2 million, not $12 million, according to CEO Tom Kane.)

 

RI Advocates In Action To Host Information Session

Rhode Island’s Advocates in Action, a non-profit educational organization aimed at empowering adults with disabilities to advocate for themselves, will sponsor a free informational session Thursday, March 30,  on “Frequently Asked Questions” about federal and state-funded Medicaid services offered through the Division of Developmental Disabilities.

Members of the organization’s current leadership class have surveyed recipients of developmental disability services on their primary concerns and will share the top questions and answers during the session, from 7 to 9 pm. at the Crowne Plaza Hotel in Warwick, according to a spokeswoman. The leadership class includes recipients of developmental disability services and individuals who support them. 

Topics on the agenda include applying for services, finding a place to live, looking for a job, planning for supports, appealing decisions made by the state, and living in the community.

Pre-registration is not required, but those planning to attend are asked to RSVP by phone to 877-532-5543 (toll free) or by email to aina@advocatesinaction.org