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.) 

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.

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.

RI DD Regulatory Overhaul To Emphasize Transparency; Quality Services, Officials Say

By Gina Macris

When proposed new regulations for Rhode Island’s Division of Developmental Disabilities (DDD) emerge from committee early in 2018, they will aim to ensure that all agencies providing services to persons with disabilities meet consistent high-quality standards.

The state will require direct care agencies to employ staff with distinct certifications to provide one or more kinds of supports to clients. Training of agency workers is expected to follow the same process that is now required before direct care staff can work in a pilot job support program run by DDD – a  combination of classroom instruction, field work, and a final exam. 

But workers will not be expected to have certification the moment the new regulations go into effect. Expanding the training process begun for workers in the supported employment pilot program will take time, said Kerri Zanchi, director of DDD.

Another feature of the new regulations will require DDD to publish the categories of licenses held by direct care providers. They are: 

• “Full,” or unrestricted
• “Full, with stipulations”
• “Provisional”, to designate a new service provider
• "Conditional”, or probationary
•  “Suspended,” which means not currently in operation, but the license has not been revoked.

Zanchi and Kevin Savage, the director of licensing for the division’s parent organization, the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH),talked about the overhaul of regulations during a wide-ranging public forum at the Smithfield Senior Center Nov. 7 and in an earlier interview with Developmental Disability News Nov. 3.

The Division of Developmental Disabilities is not alone in rewriting its regulations.

All agencies of state government must recast their rules of operation by August, 2018 with an eye toward simplicity and clarity of language as part of the Administrative Procedures Act of 2016, pushed by Governor Gina Raimondo in a drive for greater transparency in state government.

Even before the regulations are finalized, Savage said in the interview Nov. 3, he hopes to have licensing categories for all developmental disability service providers posted on the BHDDH website.

The proposed regulations have emerged from six months’ work on the part of a broad-based committee of individuals with a stake in the developmental disability system, including consumers and family members, Savage told an audience of about 75 at the public forum in Smithfield Nov. 7.

“The community was well served by this process. It was amazing,” Savage said.  Representatives of different segments of the developmental disabilities community listened to each other and showed “passionate concern with the people being served,” he said.

The proposed regulations will be shared with the developmental disabilities community before they go out for formal public comment, Savage said. Community meetings will be set for early 2018, after the year-end holidays, he said.

Among other things, the new regulations will help eliminate inconsistencies across departments of state government, Savage said, like background checks for prospective workers who would come into contact with vulnerable children and adults in a variety of capacities.  The regulatory reform also is necessary to comply with the so-called Final Rule for federal/state Medicaid Home and Community-Based Services (HCBS).  The Final Rule, a compilation of federal regulations, emphasizes that all persons with disabilities who receive Medicaid services must have access to their communities to the greatest extent possible.

Both the HCBS final rule and a separate 2014 federal consent decree pushing  employment opportunities and community-based non-work activities for Rhode Islanders with developmental disabilities get their authority from the 1999 Olmstead decision of the U.S. Supreme Court. The decision clarified the integration mandate in Title II of the Americans With Disabilities Act.

Zanchi, the DDD director, said that the regulatory shift toward certification of the skills of direct care workers is partly driven by U.S. District Court oversight of the Olmstead consent decree, in which an independent court monitor has emphasized continuous quality improvement.

“The public will know what the providers are certified to do,” Zanchi said in the interview Nov. 3. “And that’s part of our quality management plan.”

“That will be hard work,” she said. “We will build certification standards in each area, starting with day and employment services.”

In the future, the whole notion of certification is likely to overlap with fiscal discussions about low wages and high turnover in the field of direct care, where one job in six goes vacant, according to a trade association of developmental disability service providers.

The pilot program in supported employment requires certification for workers who provide services in job development, job coaching and the like. But the graduation rate from a tuition-free training program at the Sherlock Center on Disabilities at Rhode Island College so far has been about 40 percent, for a variety of reasons, according to a Sherlock Center official.

RI House Finance Votes For DD Worker Raises, Free Bus Passes, Supplemental DD Services

By Gina Macris

Despite tense negotiations around a $134-million projected revenue shortfall in Rhode Island for the next fiscal year, the House Finance Committee has approved an $11-million increase in federal and state funds to provide raises for direct care workers supporting adults with developmental disabilities and home health care aides in the next fiscal year.

Early the morning of June 16, The House Finance Committee sent an overall $9.2-billion spending package to the full House, which is expected to vote Thursday, June 22.

The Finance Committee’s revised budget also includes $3.4 million a year for two years to restore free bus passes for the elderly and disabled. Since Feb. 1, low-income elderly and disabled riders on the Rhode Island Public Transit Authority (RIPTA) have had to pay 50 cents each trip, and 25 cents for each transfer. During the next two years, the executive branch of government is to figure out a permanent solution to ensure that vulnerable Rhode Islanders have access to public transportation.

According to a House spokeswoman, the proposed budget adopts Governor Gina Raimondo’s request for raises for home health and direct care workers who support some of the state’s most vulnerable citizens, shouldering great responsibilities for poverty-level pay.

The Governor’s budget plan included $6.2 million — $3 million in state revenue and $3.2 million in federal Medicaid funds — for raises of about 5 percent for direct care employees of private agencies that provide most of the supports for adults with developmental disabilities.  Another $4.4 million –$2.2 million from state revenue and the rest from Medicaid – will raise the pay of home health care aides by 7 percent.

Assuming that the raises pass the House and Senate, some 4,000 developmental disability workers will see increases in their paychecks of about 55 cents an hour, before taxes, sometime before Oct. 1. They now make an average of $11.14 an hour, according to a trade association representing about two thirds of some three dozen agencies operating in Rhode Island.

The latest incremental boost in pay would mark the second consecutive year that home health aides and developmental disability workers would have received wage increases, although there appears to be a growing opinion in both the House and Senate that direct care workers remain woefully underpaid for the job they do.

Last fall, State Sen. Louis DiPalma, D-Middletown, launched a call for this year’s raises as the initial phase of a “15 in 5” campaign that would elevate direct care workers’ pay to at least $15 an hour in five years; by July 1, 2021. A resolution to that effect has passed the Senate Finance Committee, of which DiPalma is vice chairman.

Members of the House have proposed various bills or resolutions to reach that $15 mark sooner, or to ask the Executive Office of Health and Human Services to raise direct care workers’ pay by 28.5 percent to achieve parity with Connecticut and Massachusetts rates by October of this year. Those measures appear to have died in committee.

In hearings in both the House and Senate during the current session, however, legislators have heard testimony that Rhode Island has a tough time competing with Connecticut and Massachusetts for direct care workers, because those states are such an easy commute for many Rhode Islanders.

The House Commission on Vulnerable Populations has included a recommendation that the state strive for direct care wages that are competitive with neighboring states in its final report on its deliberations for the last several months.

During a recent meeting on a draft report, Commission chairman Jeremiah O’Grady, D-Lincoln, the Deputy Majority Leader, said it is clear that salaries for direct care workers have a relationship to quality of care and employee turnover.

“What we see are the most qualified employees going to other states,” he said, and “we hear about very high turnover rates – something like 60 percent – within the first six months” in Rhode Island.

Another factor that will undoubtedly have a bearing on future discussions of direct care pay is that the House Finance Committee agreed to phase in a 90-cent increase in the minimum wage, now $9.60 an hour. That rate would increase 50 cents, to $10.10 an hour, Jan. 1, 2018, and another 40 cents, to $10.50 an hour, on Jan. 1, 2019. That means that the pay of direct care workers will continue to hover around minimum wage or a little higher.

Meanwhile, Massachusetts has committed to raising its rates for direct care workers to $15 in 2018.

Complete figures on the developmental disability budget were not immediately available.But on June 19, a spokeswoman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) said that Governor Raimondo got all she asked for in developmental disability spending from the House Finance Committee except for $200,000 in supplements to the current fiscal year and an equal amount in the fiscal year beginning July 1.

Last July 1, the state Division of Developmental Disabilities started the current fiscal year with an enacted budget of more than $246 million. Raimondo’s total request for fiscal 2018, beginning July 1, was $256.7 million.

Apart from the raises for direct care workers, the Division of Developmental Disabilities has sought funds to cover an estimated deficit of $3.6 million in the existing budget because of supplemental payments needed to respond to successful appeals of funding allocated for individual client services.  Those payments – not reflected in a separate line item – were nevertheless budgeted at $18 million in the fiscal year ending June 30, according to fiscal analyses done by both the House and Senate.

In the fiscal year beginning July 1, Raimondo asked for an additional $500,000 for supplemental service allocations. That increase would bring the total for such payments to just over $22 million annually. In a Senate Finance Committee hearing earlier this year, DiPalma, the committee’s vice chairman, noted that these extra payments totaled about 10 percent of all reimbursements to private agencies providing developmental disability services. That was too much, he said, indicating that equation the state uses to assign individual funding in the first place needs review.

The compromise budget passed by the House Finance Committee absorbed the $134-million projected revenue shortfall in the next fiscal year through a number of approaches: using one-time revenue, scaling back the Governor’s economic development initiatives, and making a myriad of cuts throughout state government, among others. 

 The Raimondo administration also is expected to make $25 million in unspecified cuts. The $25-million spending reduction and other provisions based on certain assumptions for the future make the budget a tricky one to balance, said DiPalma, a leading advocate for those with developmental disabilities and others receiving Medicaid-funded services.

For example, he said, in the BHDDH budget, there is an expectation that the Eleanor Slater Hospital will be able to shift $1.6 million in operating costs from state revenue to third-party payers during the current fiscal year and an equal amount in the fiscal year beginning July 1. He indicated that achieving all the designated savings in state revenue in the current fiscal year might be a challenge when only ten days remain in the budget cycle.

The BHDDH budget also contains a variety of cuts to capital projects, although a department spokeswoman said funds for improvements to the Eleanor Slater Hospital were transferred to the Division of Capital Asset Management and Maintenance (DCAMM), which is part of the Department of Administration.

Despite his concerns about the ability of the state to make the required adjustments to balance the budget, DiPalma said that developmental disability funding is moving in the right direction, with legislators listening to the facts and figures presented to them about the need for quality care.

A more comprehensive picture of the budget is expected to unfold as it goes before the full House and Senate over the next two weeks.