RI DD Budget Emphasizes Quality Improvement, But Services Remain Scarce

By Gina Macris

April 9 marks the beginning of the eighth year of a ten-year period during which Rhode Island has pledged to comply with a federal mandate ensuring that adults with developmental disabilities enjoy meaningful lives in their communities - just like everyone else.

In other words, Rhode Island has three more years to prove to the U.S. Department of Justice that the state no longer violates the Integration Mandate of the Americans With Disabilities Act and has done everything it agreed to do under a federal consent decree signed in April of 2014.

In budgetary terms, the state has just three more fiscal years to accomplish a complete and potentially costly overhaul of services for about 4000 adults with intellectual and deveopmental challenges.

With this timetable in mind, individuals with developmental disabilities, their families, advocates, the private agencies the state relies on to provide services, and a federal judge are all focused on Governor Daniel McKee’s budget proposal for the fiscal year beginning July 1, year eight of the march toward compliance.

Daniel McKee

McKee’s overall state budget recommendation, which allocates $294 million in state and federal funds for developmental disability services, is now in the hands of the state legislature.

Those associated with the developmental disability community hoped to find a higher allocation, but instead the governor’s budget called for an unexpected $10-million reduction in overall spending. Even more puzzling for many, including individuals and families who have gone a year with few, if any, services, was the absence of an hourly wage hike to attract workers back into the field.

The U.S. District Court, which is supervising the state’s effort to comply with the consent decree, has emphasized that a poorly-paid, unstable workforce and inadequate state reimbursement rates to private providers are the biggest issues standing in the way of compliance.

The budget’s $10-million reduction reflects a decline in the caseload, the state developmental disabilities director, Kevin Savage, told a public forum March 22.

Developmental disabilities officials have not produced any caseload figures to back up that claim, and publicly available data indicate the number of people eligible for services has increased and will continue to do so.

Kevin Savage

The governor’s budget also includes a $15 million set-aside for innovation and quality improvement efforts for the first of the final three years of the state’s compliance effort, indicating that officials are prioritizing administrative reforms required by the consent decree.

For example, some of the $15 million would be used to develop an alternate to the existing fee-for-service reimbursement model, according to officials of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

BHDDH officials also say they plan to address the wage issue in the fiscal year beginning July 1, 2022. They say that timetable could speed up if the state uses federal COVID-19 relief money from the American Rescue Plan, which was enacted just a few days before Governor McKee submitted his budget to the General Assembly.

“Investments in the DD system cannot only about the sufficiency of funding for the system,” BHDDH officials said in a statement issued March 23. “It must also be about how funds in the system are spent and how to use money to drive better outcomes for adults with intellectual and developmental disabilities,” they said.

Judge McConnell

The state’s timetable for addressing the issue of low wages would arguably cut it very close for achieving compliance with the consent decree, given the definition of compliance the U.S. Department of Justice has presented before Chief Judge John J. McConnell, Jr. of the U.S. District Court.

DOJ lawyers have said that full or “substantial” compliance means that all the required changes have been up and running smoothly for at least a year before a particular agreement is set to expire.

In this case, Rhode Island will have to have all the required changes up and running smoothly by July 1, 2023 for the state to achieve compliance by June 30, 2024.

BHDDH officials have aimed at completing implementation by December, 2022, giving them just six months to fine tune everything before the clock starts ticking on that critical final year. The consent decree has provisions for extending federal oversight beyond 2024.

As for the here and now, the first court-ordered budget negotiation meeting on McKee’s $294 million proposal for the fiscal year beginning July 1 was scheduled for March 26 between providers, incuding the Community Provider Network of Rhode Island (CPNRI), and state officials.

Although Judge McConnell said in a court order in January that direct care worker wages should be raised to $20 an hour, he indicated in a subsequent order that he would accept solutions that are negotiated between the state, providers, and the developmental disabilities community.

McConnell wants the first of three monthly budget progress reports from the state on April 30 – in less than six weeks.

CPNRI is seeking increased reimbursement rates that will allow agencies to raise average direct care pay from $13.08 to $17.50 an hour. The starting rate for workers in the state-run group home system is about $18.50 an hour. BHDDH wants to shift responsibility for those in the state-run system to private service providers next year.

Tina Spears

“Improving capacity and ensuring access to services starts with a well-trained, adequately compensated staff,” Tina Spears, executive director of CPNRI, said in a statement.

“We cannot continue to have the turnover rates (an average of 30 percent a year) the vacancy rates (an average of one in 5 jobs unfilled) and bare bones supervisor and management structures and produce measured outcomes,” she said.

In theory, CPNRI can support reforms to emphasize quality and outcomes, “but until we are able to invest in our workforce, it is not something we can engage in or support,” Spears said.

In a statement March 23, BHDDH officials said Governor McKee’s budget proposal is intended to be a “starting point” in the overall budget process.

A total of $21 million will be dedicated to improving quality and access to services and relieving administrative burdens, according to BHDDH and the Office of Management and Budget. The breakdown includes:

• $7 million for financial incentives to providers to promote quality improvement efforts and improved access to services in communities.

• $4 million for an outcome-based payment methodology that would serve as an alternative to the fee-for-service model that is now in place

• $4 million for the Brown Policy Lab to provide technical assistance and detailed implementation plans to state officials, including funding for two fulltime positions.

In addition, there would be about $6.7 million made available for services that the state has been able to count as savings as part of its quarterly authorizations to individual consumers.

In current the fee-for-service system, any funds not used within a particular three-month period cannot be carried over to the next quarter. Because it’s difficult for individuals to have 100 percent attendance at all scheduled activities - even an afternoon reserved for a doctor’s appointment reduces reimbursement to providers - consumers end up leaving a certain amount of money unspent during a particular quarter.

The money appears in the budget, but through repeated experience, state officials have learned to count it as savings. That funding will now have to be made available as the state switches to annual funding authorization, which is required by the court to give consumers more flexibility in how they arrange their services.

BHDDH says the details of the other initiatives will be worked out with providers.

State officials say that providers can use part of the $4 million set aside for an alternate payment model to increase wages.

But Spears, the CPNRI director, said that option is unrealistic, because providers run the risk of the innovation grant ending without having continued funding to maintain the higher wages. And it’s not clear how many of the three dozen private providers would be able to participate in the development of the alternate payment model, she said.

Reacting to the state officials’ spending plans, Spears said, “At this point, CPNRI does not fully understand how this funding is structured, or how it would be deployed, “

She added: “CPNRI cannot support a budget proposal that does not fully fund services for individuals with intellectual/developmental disabilities, nor do we support diverting funds from service delivery to invest in organizational transformation.”

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

Gallivan's Short Stint in RI Brings Plenty of Change, Starting with Plans for Better DD Assessment

Jane Gallivan   Photo by Anne Peters

By Gina Macris

In just the few months she has served as interim director of Rhode Island’s Division of Developmental Disabilities, Jane Gallivan has been instrumental in changing the state’s approach to providing services for individuals with intellectual challenges.

On the most concrete level, she has set plans in motion to adopt an improved version of a controversial assessment – the Supports Intensity Scale (SIS) – to more accurately determine the needs of clients.

With help from the Executive Office of Health and Human Services, Gallivan also has shifted strategies for presenting the division’s budget so that the state Budget Office and the General Assembly better understand what it means to support individuals with developmental disabilities.

The initiatives Gallivan has begun, and the tone she has set, are expected to continue after her role changes Friday, Sept. 30, to that of long-distance consultant.

Gallivan, 68, is taking her 101 year-old mother to Florida for the winter, a commitment she made before Rhode Island officials approached her for short-term help in leading the developmental disabilities division.

She will continue to monitor and guide reforms and will serve on the committee that will screen applicants for the division’s permanent chief.

A former state-level director in Maine and Delaware, Gallivan already has been spreading the word about the director’s job through her nationwide contacts in the field of developmental disabilities.

As she prepared to end her full-time role in Rhode Island, Gallivan shared her perspective on the future of developmental disability services in Rhode Island.

Major Changes Coming to Every State

Gallivan says all state developmental disability service systems are in the midst of a sea change because of sweeping new Medicaid regulations.

The rules say that all services for the elderly and individuals with all types of disabilities must be provided in the least restrictive setting that is therapeutically appropriate, which is presumed to be the community.

After March, 2019, Gallivan said, Medicaid will no longer pay for sheltered workshops or segregated day programs after March, 2019.  Sheltered workshops don’t fit the Medicaid’s definition of “community,” she said.

Federal Medicaid dollars pay for half the cost Rhode Island’s developmental disability services.

The federal consent decree requiring Rhode Island to shift to community-based jobs and activities may put the state ahead of the curve, she said.

Both the consent decree in Rhode Island and the changed Medicaid regulations nationwide get their authority from the 1999 Olmstead decision of the U.S. Supreme Court, which is in effect a desegregation order for individuals protected by the Americans with Disabilities Act. 

Individuals and families who struggle to find appropriate services may not yet see any change in their lives.

Gallivan says she worries about a caseload ratio that is “way too high” - one social worker to every 205 clients.

Social workers are “really concerned about helping people out,” she said, “but like any other service system, they are often, because of the ratios, dealing more with people in crisis”  or those just entering the system, rather than “supporting the people who are not the squeaky wheel.”

“No one wants to expand state government,” but state government must still “figure out how we’re going to put more resources into case management,” Gallivan said.

A New Way to Assess Service Needs

Since taking the interim director’s job in July, Gallivan has been “looking under the hood,” as she put it, to understand the barriers that need to be removed to allow “people to really get out and enjoy activities in the community, to get better connected, to explore new job options and so forth.”

She’s been searching for hindrances in state regulations, the way programs are funded, and the way clients have been assigned individual funding based on “tiers,” or levels of need.

The Supports Intensity Scale, (SIS) is a lengthy questionnaire used since 2011 to determine the individual level of funding according to “tiers” labeled A through E, with E being the costliest.

In the last few years, the SIS been the single most emotional flashpoint for families, many of whom have complained bitterly not only about results that yield insufficient funding, but that interviewers argued with them or recorded answers different than the ones they gave.

In the next several months, Gallivan said, the state will move to what she hopes will be a more accurate version of the assessment, with additional questions focusing on medical and behavioral needs.

SIS Interviewers will be retrained in the new version by representatives of the organization which developed the SIS, the American Association on Intellectual and Developmental Disabilities (AAIDD).

Gallivan said training also will be offered to family members and representatives of service provider agencies, who attend the interviews and help answer questions.

The state will monitor the new approach to determine whether it leads to a reduction of a high number of exceptions now granted to the assessment results. 

The exceptions, in which a client may have more funding than warranted by the official level of support, have raised numerous questions in the General Assembly about how the Department of Behavioral Healthcare, Developmental Disabilities, and Hospitals (BHDDH) manages its budget. 

Gallivan offered some background on the SIS, which is used in Rhode Island as a basic building block of the developmental disability budget.

On its face, the SIS is a better assessment than some others in use across the country because it frames questions in terms of an individual’s strengths and the supports he or she may need to achieve a particular goal, rather than focusing on deficits, Gallivan said.

But it has its limitations, she readily acknowledged. It is recognized nationwide that the SIS does not address extensive medical needs or behavioral issues, Gallivan said.

“You also have to be sensitive to people who are very independent, but they may get themselves into trouble with the law,” or in some other way, because of their disabilities, she said.  For example, some individuals may appear independent, but if they don’t have the proper support and guidance, they may end up at a homeless shelter, or picked up by police for shoplifting.

The SIS was developed as a tool for planning individualized programs of support, not as a funding mechanism, although many states use it for budgeting, Gallivan said..

As a result of the gaps inherent in the original assessment, the state of Oregon developed a number of questions on behavioral and medical support needs that were tried out by other states and ultimately incorporated into a new version of the questionnaire called the SIS-A, Gallivan said.

“Everyone came to the conclusion that these supplemental questions really did add a more robust, accurate assessment,” she said.

AAIDD released the SIS-A in 2015, according to the organization’s website.

Gallivan said arrangements are being made for AAIDD representatives to come to Rhode Island for training in the SIS-A. At the same time, the consultants who developed the formula for turning SIS scores into individual funding levels have been asked to revise that algorithm to correspond to the SIS-A, she said.

Disability Services: a Lifetime Commitment

Meanwhile, Gallivan has tried to set a different tone for presenting the needs of individuals with developmental disabilities to the state Budget Office. 

“I’m not saying that people don’t know” what the Division of Developmental Disabilities does, “but a lot of people really don’t know,” she said with a chuckle.

“So I think it’s really important to paint a picture” of the service system and the people in the middle of it, Gallivan said.

Budget officials should know who the division serves, whether they live with their families or elsewhere, the kinds of services they receive, why the services are important to them and their families, the actual costs of providing those services, and the expected outcomes, Gallivan said.

That’s a different approach than seeing the system as a list of line items, she said.

It’s important for the fiscal arm of state government to understand that “we are the long-term care system,” Gallivan said.

“People think of the elderly as being the long-term care system, but they’re only in there for a few years,” she said.

“We’re talking birth to 100” in developmental disabilities, she said.

Legislators must understand that they can’t take money from individuals with developmental disabilities and give it to someone else, Gallivan said.

“In this system, everyone who comes through the door will have a life-long need for some kind of support because of the nature of their disability,” she said.

It’s not analogous to the mental health system, where funds may be shifted because one person is in recovery and another is not, Gallivan said.

A Focus on Families

In any presentation she makes, Gallivan said, she tries to emphasize the need to support families who have a member with developmental disabilities living at home with them.

Many families want their loved one at home, she said. "Ffrom a bureaucratic perspective, it’s (generally) the safest place they’ll be,” she said, “and the cost of services in the family home will be less than they will be anywhere else.”

“So how can we invest in families and recognize them as caregivers? We talk about people as caregivers of those with Alzheimer's, but we have people who are caregivers of people with developmental disabilities who face a lot of challenges” and have their own need for support, Gallivan said.

She suggested families should have access to more respite care and should be able to get financial support for modifications like wheelchair ramps.

Gallivan also indicated technology might help families keep tabs on their loved ones, although options like bedroom cameras might not be universally welcome in some homes.

The full range of supports for families “need to become a very strong focus,” Gallivan said, “and the type of planning we need to do with families is very different.”

“You need to talk about the whole family and what the family needs are,” she said.  

Families and individuals who advocate for themselves must be part of the conversation, Gallivan said.