RI Parents: System Of Care Fails To Address Supervision of Adults With DD In Hospital Setting

Jane Sroka * all photos by anne peters

By Gina Macris

Access. Quality. Safety.

Those are the three words chosen by officials of the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to sum up their overarching goals in serving adults facing intellectual and developmental challenges.

But at a public forum in Warwick Feb. 5, Jane Sroka, the mother of a man with intensive special needs, said the reality falls far short of those three goals when adults with special communications and behavioral needs are hospitalized.

The Medicaid dollars to which Sroka’s son is entitled through Home and Community-Based Services funded through BHDDH stop at the hospital’s door.

“My son needs 24/7 eyes-on supervision at all times. It’s huge. It’s life and death. That’s what it is,” she said.

In the hospital, Sroka said, “I was with him 24/7. He was awake 24/7. I was awake, 24/7. That was tough. It’s grueling on everybody.”

You’re talking about putting safety first? This is safety first,” Sroka said.

Not providing that round-the-clock supervision, in her son’s case, would have been dangerous, she said.

It’s not that the nurses don’t care, she said, but “if I wasn’t there, they wouldn’t have a clue about what to do or how to do it or when to do it, or whatever. It’s dangerous. And it has to change,” she said. She said she knows she is not alone.

Gail Peet had a similar story. She said her daughter, 47, who is non-verbal, became extremely agitated when a feeding tube was inserted.

After her daughter was transferred to a nursing home, Peet said, she asked the staff to put a binding around the feeding tube to prevent her daughter from ripping it out.

The nursing home refused, on the grounds that the binding would constitute a “restraint,” Peet explained after the forum. The next morning, the staff discovered that Peet’s daughter had indeed ripped out the tube, which had to be re-inserted, causing her the additional pain of a second procedure.

In neither Peet’s nor Sroka’s case did there appear to be a plan for in-hospital or discharge care that addressed complications that could arise from individuals’ particular challenges as persons with developmental disabilities.

Rebecca Beaton

And Rebecca Beaton, who uses a wheelchair and must make a great effort to shape each word, said she, too, needs 24-hour care if she goes to the hospital because she has a speech problem and not everyone understands her. A support person seated next to her at the forum repeated her words for clarity.

John Susa, former chairman of the Rhode Island Developmental Disabilities Council and the father of a man with extensive needs, said there used to be a pool of state funds — outside the federal-state Medicaid structure — that was once used only in emergencies involving adults with developmental disabilities. He suggested that officials re-visit that idea.

Kerri Zanchi, Director of the Division of Developmental Disabilities (DDD),, stood at the podium of a meeting room in the Warwick Public Library, taking notes.

Kerri Zanchi

Medicaid separates Home and Community Based Services (HCBS) from hospital services to avoid duplication, Zanchi explained.

“But I hear you,” she told Sroka and Peet, that the situations they described were not about duplicate services.

Zanchi raised the possibility that an upcoming initiative, the creation of a “Health Home,” might open an opportunity to provide the kinds of supports that Sroka and Peet needed in the hospital and nursing home. A Health Home is a Medicaid-spawned concept for the management of services, not a bricks and mortar facility.

“It is so important for the individuals we love and support to have that consistency and continuity of care,” she said.

Earlier in the forum, Zanchi had explained the Health Home as an entity that would manage a program of individualized services around the unique needs and preferences of a particular person served by DDD.

FROM OLMSTEAD TO HEALTH HOMES

Medicaid created the Health Home option to separate the design and management of services from the funding and delivery of services. The goal is to avoid any conflict of interest that might compromise the quality of care.

The states must provide so-called “conflict-free case management” by 2022 to comply with the Medicaid Home and Community Based Services Final Rule, issued in 2014 to align Medicaid with the integration mandate of the Americans With Disabilities Act.

According to the 1999 Olmstead decision of the U.S. Supreme Court, the integration mandate says individuals with disabilities must have access to the supports they need to live regular lives in the least restrictive environment that is therapeutically appropriate – and that environment is presumed to be the community.

In line with Olmstead, as well as a 2014 consent decree in which Rhode Island has agreed to desegregate its daytime services for adults with developmental disabilities, state officials and the developmental disability community have embraced the idea of “person-centered planning,” which puts the needs and preferences of individuals at the core of any service plan.

But at the forum, Mary Beth Cournoyer, the mother of an adult son with developmental disabilities and a member of the Employment First Task Force, suggested “whole life” planning as a more encompassing term.

“How do we build lives? It’s 24 hours a day, seven days a week,” she said. The Employment First Task Force to which she belongs was created by the consent decree to serve as a bridge between the community and state government.

Zanchi said state officials will meet with their community partners, including families and providers, to ask them to help draft the design for a Health Home for adults with developmental disabilities before the application is submitted to the federal Medicaid program.

She said DDD hopes to have a Health Home up and running in about 12 months.

NEW WORKPLACE LAW AFFECTING SOME DD SERVICES

The forum also brought to light apparently unintended consequences of the Healthy and Safe Families and Workplaces Act, which went into effect last July 1, guaranteeing all workers get time off to go to doctors’ appointments and attend to other important personal and family needs. Companies with 17 or more employees are required to give paid leave.

Sue Babin of the Rhode Island Developmental Disabilities Council said that those who direct services for themselves or a loved one are receiving conflicting advice from fiscal intermediaries about whether the law applies to support staff for adults with developmental disabilities.

And some individuals who are advised the law does apply and are granting time off to their support staff are having problems finding substitute workers, Babin said.

Zanchi suggested a separate meeting with families that organize and direct their own services to discuss the impact of the new workplace law and any other inconsistent advisories they may be receiving from fiscal intermediaries, who control the individualized budgets the state authorizes to be spent on services for particular individuals.

RATE REVIEW GEARING UP

In an overview of changes at DDD, Zanchi announced that the division is about to embark on a review of its fee-for-service rate model for reimbursing private agencies that provide most of the developmental disability supports in state.

To that end, BHDDH has selected an outside consultant for the remainder of the current fiscal year and the new budget cycle beginning July 1.

Zanchi declined to name the contractor until a purchase order for services has been signed by the state purchasing office. She did say, however, that the consultant was not Burns & Associates, the Arizona-based company that helped a previous administration devise Project Sustainability That is the name for the existing fee-for-service model that doles out payments for daytime services in 15-minute increments that must be documented by each worker for each client served.

Zanchi said $500,000 for the consultant was budgeted in the current fiscal year, and an equal amount is in the governor’s proposal for the next budget.

To expedite the rate review, the contractor was selected as a “sole source” provider, without the months-long process or issuing a request for proposals and reviewing bids, Zanchi said.

NEW YOUTH AND TRANSITION ADMINISTRATOR

Zanchi announced that Susan Hayward, a veteran social casework supervisor, has been named to the new position of Youth and Transition Administrator, to coordinate a smooth shift for high school special education students moving into adult services.

Employment opportunities and other transitional servicesfor teenagers and young adults are a prime concern of the independent court monitor overseeing implementation of the 2014 consent decree, as well as an earlier interim settlement agreement affecting only youth and adults in Providence.

The 2013 interim settlement agreement addressed violations of the integration mandate of the ADA that involved a special education program at the Birch Academy of Mount Pleasant High School being used as a feeder program for a former sheltered workshop in North Providence called Training Through Placement. The agreement is set to expire July 1, 2020, at the discretion of the U.S. District Court.

BHDDH officials presented a PowerPoint of information covered at the public forum. To view it, click here.

The advocacy group RI FORCE (Rhode Island Families Organized for Reform, Change, and Empowerment) recorded the public forum and has posted the video, in three parts, on its Facebook page. To connect to the video, click here.

RI Governor's DD Budget Would Add $8.7 Million in Medicaid Funding For Wages, Higher Costs

By Gina Macris

Rhode Island Governor Gina Raimondo’s recently released budget proposal would add nearly $8.7 million in new funding to the system of privately-run services for adults with developmental disabilities in the next 17 months, through June 30, 2020.

Most of that overall $8.7-million-increase, $6.4 million in federal and state Medicaid money, would fund raises for workers of some three dozen private agencies that provide developmental disability services under contract with the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

The raises would take effect July 1. Funding for the added wages - an estimated 44 cents an hour – is carved out in the budget bill for Fiscal Year 2020 that Raimondo has submitted to the General Assembly.

The budget bill also requires that almost $1.6 million in federal-state Medicaid funds be earmarked for technical assistance to private providers changing from segregated care to community-based, integrated service to comply with a 2014 federal consent decree.

The current overall spending level for developmental disabilities, $271.7 million, would increase to $273.1 million for the budget ending June 30. In the next fiscal cycle beginning July 1, the spending ceiling would rise to nearly $280.9 million, including federal, state and miscellaneous sources of revenue.

The Division of Developmental Disabilities (DDD) draws more than half the resources assigned to BHDDH – which is currently budgeted for a grand total of almost $422.5 million. Under Raimondo’s plan, the bottom line for the entire department would grow to about $448.5 million in Fiscal 2020 – an increase of $26 million, including about $19.7 million in supplemental funding for the existing budget.

Developmental disability services are financed through the federal-state Medicaid program, with the federal government paying nearly 53 cents on the dollar.

The governor’s executive summary, however, tends to focus on the state outlay alone. It says $3.1 million in state funds would be earmarked to cover an existing deficit and an additional $3.3 million would be set aside in the fiscal year beginning July 1 for increased caseload costs.

Those budget items, combined with the state’s share of the $6.4 million proposed wage increase - $3 million – add up to $9.4 million, nearly twice the overall $5 million in new state tax dollars that Raimondo would apply to developmental disabilities for the remainder of the current fiscal year and the next one.

The state would have to use savings in other areas to fully fund Raimondo’s plan for developmental disabilities, but neither the budget language nor the governor’s narrative spells out which cost-cutting measures would fill the gap.

The first-quarter spending report for BHDDH put the projected deficit in developmental disabilities at a total of $7.6 million for the current fiscal year, including federal and state funding.

The updated report for the second quarter will not be ready until Jan. 31, according to BHDDH officials.

But at a recent press briefing on the budget, Rebeca Boss, the BHDDH director, said she is satisfied that the governor’s proposal will enable the department to balance its current budget.

Among other things, the plan would restore money in the current budget that the DDD otherwise would have saved if it had won federal approval for a “Health Home,” a Medicaid option featuring a managed-care approach that also provides for a third-party to coordinate services for individuals.

The Health Home would help DDD comply with a Medicaid rule for Home and Community Based Services which requires case management to be separate from funding or service delivery. Currently DDD is responsible both for funding and for case management, which Medicaid perceives as a conflict of interest.

Boss said BHDDH has not yet submitted an application for a Health Home option for developmental disabilities. The budget assumes that a health home plan for developmental disabilities will be approved and go into operation during Fiscal 2020, which begins July 1.

Medicaid will reimburse 90 percent of the state outlay for health homes for a maximum of two years. After that period, the reimbursement rate for health homes will drop back to the regular rate for Rhode Island, whatever it may be at that time..

To help close the current deficit, the governor recommended an additional $273,412 in state revenue for BHDDH to pay homemaker licensed practical nurses who work with adults with developmental disabilities. The Executive Office of Human Services granted them a slightly higher pay increase than BHDDH had budgeted and the General Assembly had approved.

In adding $3.3 million in state revenue for “caseload” expenditures for the 2020 fiscal year, Raimondo’s executive summary said she “accepts the Department’s (BHDDH’s) most up to date projections” on costs, “ensuring no changes to services for DD consumers and continued financing to improve achievement of consent decree mandated services.”

Last year at this time, Raimondo had proposed cutting a total of more than $18 million in federal-state funding from developmental disability services, with a spokeswoman for the Office of Management and Budget saying the proposed reduction was based on calculations made from “estimated growth rates in the cost of providing services.” She did not elaborate.

Raimondo, pressed by the independent court monitor overseeing the implementation of a 2014 federal civil rights consent decree, eventually restored the funding and pledged the state’s support of the work ordered by the federal court.

The consent decree requires Rhode Island to correct violations of the integration mandate of the Americans With Disabilities Act, reinforced by the 1999 Olmstead decision of the U.S. Supreme Court, by ending its over-reliance on sheltered workshops and segregated day care.

This year, according to Boss, BHDDH submitted cost projections on the basis of actual claims, as directed by the Executive Office of Health And Human Services, rather than individual funding authorizations.

In the process of updating projections, the data was refined to remove claims that had been double-counted on Medicaid rolls of both BHDDH and EOHHS, according to the executive summary of the budget.

For Fiscal 2020, the governor’s budget summary highlighted three additional areas for savings:

• ·A continuation of “residential rebalancing”, a multi-year effort to reduce the number of people in group homes, a cost-saving measure that also is intended to provide more “community-based placements such as shared living.” The budget projects $1.5 million in “residential rebalancing” in 2020.

• Closure of one state-operated group home for an estimated savings of nearly $92,000. The staff in that location will move to other sites, reducing the need for overtime in the state-run system.

• So-called “right sizing” of staffing at the state-run group home system to realize additional projected savings of $202,721. “Right-sizing” means staffing patterns will be reassessed and employees will re-bid jobs. This change is expected to reduce overnight staffing and further reduce overtime costs.

RI DD Services Get A "Status Quo" Budget, But Can It Keep Up With Client Needs And Consent Decree?

By Gina Macris

With Rhode Island Governor Gina Raimondo signing the $9.6 billion budget bill into law June 22, the service system for adults with developmental disabilities averts a crisis in the fiscal year beginning July 1, and instead continues the status quo.

That is to say, the system is still struggling to meet the needs of some 4,000 Rhode Island adults with developmental disabilities, including those who are seeking services for the first time.

Higher-than-expected revenue estimates in May enabled the House and the Senate to restore a number of reductions in the human services which Raimondo had proposed in January, including about $18 million in developmental disabilities.  On June 20, the Senate ratified the House version of the budget and sent it to the governor.

Until the state’s intent to restore the funds for developmental disability services became clear in mid-May, an independent federal court monitor had been preparing to make recommendations to U.S. District Court Judge John J. McConnell, Jr. for an order to ensure adequate funding..

It was the second time since a federal civil rights consent decree was signed in 2014 that a court order, or the threat of one, has surfaced during the budget-making season at the State House. There’s no reason to believe that the monitor won’t re-visit that idea next year if funding for developmental disability services fails to keep pace with the stepped-up demands of the consent decree, which requires the state to shift from segregated services to those offering integrated, community-based opportunities by 2024.

One goal illustrates the challenges. The state is to have part-time jobs by Sept. 30 for all young adults who left high school between 2013 and 2016 and who who want to work, but with three months remaining until the deadline, those with jobs number 235, or 55 percent, of a population of 425, according to figures released last week.

The budget does include $1.5 million in technical assistance for private providers of developmental disability services trying to adjust to integrated services for clients, according to Carmela Corte, the chief financial officer of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH). Those are federal-state Medicaid dollars that will be taken from the allocation for direct services.   

A relatively small number of adults with developmental disabilities who choose to use their funding authorizations from BHDDH for in-home care will be able to pay workers 10 percent more, which amounts to about $620,000 in the budget, Corte said.

By The Numbers 

The General Assembly also adjusted the current budget to close out the fiscal year, adding about $15.6 million to cover an operating deficit as recommended by Raimondo, who acknowledged the shortfall deficit as a one-time event.

The overall numbers in developmental disabilities:

•     $272.1 million for Fiscal 2018, which ends June 30    
• ·   $271.4 million for Fiscal 2019, which begins July 1

Administrators, however, tend to work on a day-to-day basis with an “operating budget,” which includes only federal and state Medicaid funds available for providing direct services.

For the current fiscal year, federal-state Medicaid dollars are budgeted at $269.8 million.  For the fiscal year beginning July 1, the federal-state Medicaid total is $269.2 million.

No Raises For Frontline Workers

One big-ticket item missing from the next budget is a pay increase for employees of private service providers who work directly with adults with developmental disabilities.  The underpaid workforce is sure to be a major issue for advocates when the General Assembly reconvenes in January.

Incremental raises for these workers during three budget cycles have allowed them to keep just ahead of the minimum wage, in a range which puts private service providers in competition with the same pool of workers as fast-food restaurants and other retail businesses. 

Including the most recent raises, in 2017, the average direct care worker is paid about $11.50 an hour. The minimum wage, which increased from $9.60 to $10.10 on Jan. 1, is due for another bump, to $10.50, on Jan. 1, 2019.

Before the General Assembly cut $26 million from the developmental disabilities budget in 2011, the average pay at some private agencies serving adults with developmental disabilities averaged close to $15 an hour, with comprehensive health insurance and other benefits.  Career ladders afforded front-line workers opportunities for advancement.

Since then, the workforce has become unstable, with employers unable to fill one out of six jobs, according to the Community Provider Network of Rhode Island, a trade organization. Turnover ranges from about 30 percent to about 75 percent, depending on the agency. In some cases, workers leave direct care work for other jobs with similar pay but much less responsibility. In other cases, they leave for the same type of work at better pay in Massachusetts, which is scheduled to offer a minimum of $15 an hour for such work July 1.

Budget Questions At Public Forum

The issue of worker pay surfaced at a public forum hosted by the Division of Developmental Disabilities (DDD) June 18 at the University of Rhode Island, with one parent lamenting the lack raises in the year ahead.

Kerri Zanchi                         Photo By Anne Peters

Kerri Zanchi, Director of Developmental Disabilities, and other staff of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), explained various aspects of the budget and outlined initiatives intended to help the service system in the long run.

Asked whether the “status quo” funding approved by the General Assembly would result in cost overruns in the coming fiscal year, Zanchi didn’t say.  Instead she emphasized that DDD must use its data “every single month” to support its projections and “really understand what our needs are going to look like.”  

But BHDDH projections of need for developmental disability services don’t figure in the semi-annual Caseload Estimating Conference that comes up with figures for Medicaid entitlement costs.

And the state Budget Office does not take actual costs into account in making recommendations to the governor, a spokeswoman said earlier this year.  Rather it uses “estimated growth rates in the cost of providing services,” according to Brenna McCabe. She did not say who makes the estimates or otherwise elaborate.

The new budget doesn’t allow for increases in individual funding authorizations – one of the chief causes of the cost overruns which prompted the BHDDH request for additional funding in the budget cycle now winding down.

The governor cited higher “acuity” in acknowledging that increased per-person costs fueled a projected $15 million deficit in developmental disability costs in the fiscal year ending June 30. That factor, however, was ignored in her presentation of Fiscal 2019 budget that begins July 1.

Ever since November, 2016, there has been an upward trend in individual authorizations, something  that is expected to continue for several years, until all clients have been evaluated at least once using a revised standardized interview that is considered more accurate than the previous one. Both the original interview, called the Supports Intensity Scale (SIS), and the revised one, called the SIS-A, were developed by the American Association on Intellectual and Developmental Disabilities.  

Budget Language Opens Door To Innovation

The budget contains language that responds in to a variety of concerns about who manages resources available to adults with developmental disabilities and how providers are paid. 

It gives BHDDH the required state legislative authority to apply for a so-called “Health Home” and an “Alternate Payment Method” to create pilot programs for changes in case management and provider reimbursement better suited to integrated, community-based services that are tailored to individual preferences and needs, as required by the Americans With Disabilities Act.

The Centers for Medicare and Medicaid Services (CMS) hold that neither the states, as funding authorities, nor the services providers themselves can also be responsible for designing and managing individualized programs of activities without conflicts of interests.

States should have another disinterested party in the role of case manager, according to CMS.

The Health Home is the CMS name for the third-party case management organization that would oversee individual clients’ Medicaid and Medicare services, while the Alternate Payment Method allows states to explore changes to the usual fee-for-service reimbursement to private providers.

 Zanchi and Kimberly Reynolds, BHDDH administrator of financial management, explained the goals of the applications at the public forum June 18.

Reynolds described the Health Home as a “one-stop shop where individuals and families may get assistance in managing their services.  BHDDH has three health homes, mostly in the substance abuse and mental health areas.”

By way of background, Zanchi said that the idea for applying for a Health Home grew out of collective thinking in DDD during the last year about ways to put its clients in the driver’s seat in shaping their activities, or as she put it, developing “person-centered practice.”

For one thing, the system can’t be truly “person-centered” without case management that is free of conflicts of interest, Zanchi said.

She also said a pilot program for an Alternate Payment Method might generate solutions to problems faced by the current fee-for-service reimbursement system, which poses challenges to providers trying to get their clients into the community in meaningful ways.

The fee-for service system requires providers to bill in 15-minute increments, but only when a client is actually receiving services. It doesn’t allow providers to plan ahead, because reimbursement depends on day-to-day attendance at a particular activity, without exceptions for occasions such as client’s medical appointments, illnesses, or vacations.

As the state moves to a system with greater consumer control and consumer empowerment, Zanchi said, providers will need to be able to count on more staff to get their clients into the community.

Despite the consent decree, the reimbursement system is still geared to funding programs held in facilities like sheltered workshops and day centers, where one staff member can keep an eye on larger groups of individuals than is possible in the community.

Zanchi and Reynolds each said they want the public to participate in drawing up the applications for the Health Home and Alternate Payment Method.

“We have a lot of work to do in a very quick time frame, and like everything else we’ve done, we’re going to do it with our constituents,”  Zanchi said.

The state anticipates submitting the applications, receiving decisions, and beginning pilot programs by next Jan. 1, according to Zanchi. CMS would pay 90 cents on the dollar to support the pilot programs for a maximum of two years.

Flyers distributed at the meeting gave a schedule for public meetings on the applications, but the schedule was put on hold. Reynolds said she is the contact person for the Health Home. She can be reached at 401-462-3941 or at Kimberly.Reynolds@bhddh.ri.gov 

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 

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

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 BHDDH Banking On Pilot With Higher Federal Match To Preserve Status Quo On DD Services

By Gina Macris

Rhode Island Governor Gina Raimondo’s budget for developmental disability services creates a dramatic imperative for cost-cutting during the next fiscal year, one that would reduce spending by a total of $21.4 million in state and federal Medicaid funding.

Developmental disability administrators are exploring the option of a pilot Medicaid program with a 90 percent federal match called a Health Home to fill in the gap, but have not yet determined whether it is feasible, and if so, to what extent.

The overall $21.4 million reduction represents the difference between the governor’s $272.7-million proposal for resolving the current deficit in developmental disabilities and the lowered spending ceiling of $250.8 million for the next budget cycle. The budget reduction would involve slashing $18.3 million in reimbursements to private providers and cutting almost $3.1 million from the state-operated network of group homes effective July 1.

Raimondo’s budget numbers reflect a central tension between those who believe that the state simply spends too much on Medicaid entitlements and those who believe that services for adults who struggle daily to cope with developmental disabilities have been chronically underfunded.

Raimondo’s plan for the 2019 fiscal year beginning July 1 treats a multi-million dollar deficit in the existing budget as a one-time event, while the record of the last several years shows that the shhortfall in developmental disability spending is a chronic or structural problem in which the actual cost of authorized Medicaid services exceeds the budgeted figure. 

In addition, Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) officials have made it clear that an improved assessment for gauging individuals’ support needs has been resulting in higher per-capita costs. The conversion from the old assessment to the new one, a process which started in November, 2016, is expected to take another year or two to complete as clients of BHDDH undergo re-assessment, one by one.

BHDDH officials did discover incorrect implementation of some questions in the cases of 46 individuals assessed with the new instrument, resulting in financial authorizations that were higher than appropriate.

In a recent interview, Rebecca Boss, the BHDDH director, said assessors have been retrained on exactly when they should ask those follow-up questions about behavioral and medical needs. The department has no intention of discontinuing the assessment, she said.

For the 2019 fiscal year, BHDDH officials have an idea about how to bridge the funding gap that they say makes both fiscal and programmatic sense. 

 The idea involves a new approach to case management for adults with developmental disabilities called the Medicaid Health Home. The approach would bring in significant increases in federal money, but the concept has yet to be fleshed out.  And the state is only considering a pilot program to test the model.        

 Successfully implementing the new Health Home option appears to be the state’s only safety net to protect the developmental disability service system from service reductions, waiting lists or rate cuts to providers.

In her budget message, the governor promised to reduce neither eligibility nor services for Medicaid recipients, which include adults with developmental disabilities.  

Boss, the BHDDH director, was reminded of Raimondo’s pledge and was asked whether maintaining existing levels of eligibility and services would mean cutting reimbursement rates to service providers.

Boss said, “I don’t think the department is ready to go to a rate cut” to service providers.

Boss said BHDDH has scrapped a plan for reducing reimbursement rates to providers for a relatively small number of group home residents during the third quarter of the current fiscal year.

The state’s private providers of developmental disability services have been struggling financially for years.

“The fiscal stability of our providers is very important to us,” Boss said. BHDDH counts on its private providers to enable the state to comply with demands of a 2014 federal consent decree which invokes the integration mandate of the Americans With Disabilities Act in requiring Rhode Island to end its over reliance on segregated daytime care and sheltered workshops for adults with developmental disabilities.

Boss said the budget for the next fiscal year contains $6.8 million for  reimbursements to private providers for delivering supported employment services required by the consent decree. That’s $2 million more than is expected to be paid out by the end of the current fiscal year for employment-related supports.

The possibility of assigning case management – or coordination of care – to a third-party through a Medicaid Health Home is appealing to BHDDH officials for a couple of reasons.

Using the Medicaid Health Home approach could save the state significant sums of money in the short term. States can apply for an enhanced federal reimbursement rate of 90 cents for every state dollar expended for a maximum period of two years, according to the Centers for Medicare and Medicaid Services.

The current federal Medicaid reimbursement rate is a little more than 50 cents on the dollar.  Medicaid funds all developmental disability services in Rhode Island.

The concept also could solve a looming compliance problem with federal Medicaid regulations. 

In the next few years, the Medicaid Final Rule on Home and Community Based Services will require case management to be conflict-free. That means it must be divorced both from funding agencies, like BHDDH, and from providers who have a vested interest in billing for services.

BHDDH now has about 24 in-house social workers who coordinate services for some 3,700 adults with developmental disabilities.

The Health Home option, a managed-care arrangement which pays a per-capita rate, was first introduced as part of the Affordable Care Act in 2010 and was crafted to encourage providers of medical care to take a holistic approach to their patients’ well-being.

To what extent the objectives of Health Homes encompass the social services has yet to be determined.

Boss indicated that many questions remain unresolved, such as:

•  Which clients of the Division of Developmental Disabilities would qualify for Health Home coverage?
•  What kind of entity would be equipped to serve as a Health Home for case management, and possibly other services?

According to the Center for Medicare and Medicaid Services, (CMS) Medicaid clients eligible for Health Home coverage must have at least two chronic conditions, or one chronic condition, with risk for a second; or have a serious and persistent mental health condition.

 It is not unusual for individuals with cognitive challenges to also struggle with mental health issues or chronic medical conditions, or both. 

 CMS says that Health Homes may offer what it calls comprehensive care management, as well as care coordination, health promotion, comprehensive transitional care follow-up, patient and family support, and referral to community and social support services.

 Boss envisions a two-year pilot program for the Health Home model, beginning sometime in the next fiscal year.

Here are the overall budget numbers, which reflect all sources of funding for all developmental disability programming, both state operated and private:

Fiscal Year 2018

•  Currently authorized: $256.9 million

                                           plus $15.3 million

•  Governor’s proposal:  $272.2 million

Fiscal Year 2019

• Governor’s FY 18 revised budget: $272.2 million

·                                                          minus $21.4 million

•   Governor’s proposal:                   $250.8 million

The $21.4-million reduction includes a cut of nearly $12.5 million in state funding and a loss of $8.4 million in federal Medicaid reimbursements, according to the budget proposal. Other miscellaneous pluses and minuses round out the $21.4 million total cut.

After the first quarter of the current fiscal year, the Division of Developmental Disabilities was overspending at a pace of almost $26 million in federal and state Medicaid funding, including a state share of $12 million. 

But a second-quarter spending report shows the projected deficit for developmental disabilities has shrunk to about $15.7 million, including about $5.8 million provided by the state and nearly $9.9 million in federal funds.

The governor’s proposal covers nearly all of the $15.7 million shortfall. The remaining gap concerns a bookkeeping question: whether BHDDH or the Executive Office of Health and Human Services should be charged for the state’s contract with the independent consent decree monitor.