Consultant Recommends Substantial Hikes To RI DD Rates; Public Comment Invited

By Gina Macris

The average pay of a direct care worker serving Rhode Islanders with developmental disabilities would jump almost four dollars to $22.14 an hour July 1 in a new rate structure recommended by a healthcare consultant to the state Department of Behavioral Healthcare, Developmental Disabilities, and Hospitals (BHDDH).

The proposed rate structure would make Rhode Island’s direct care workers the highest paid of any developmental disabilities caregivers in 26 states, according to the consultant, the Burns & Associates division of Health Management Associates.

Photo HMA-Burns

Stephen Pawlowski, an HMA-Burns official, presented the preliminary recommendations in video meetings Sept. 28 and Sept. 29. HMA-Burns and BHDDDH will accept public comment until Oct. 24 before finalizing the recommendations.

In compliance with a federal court order, the state has agreed to pay direct care workers a minimum of $20 an hour by 2024. To follow the state fiscal year, which begins in July, the new rate would become effective six months earlier than the court deadline. The $20 minimum means the average hourly pay will be $22.14, Pawlowski said. (see graphic, above)

Preliminary recommendations of the HMA-Burns also include significant increases in many other rates as part of a continued fee-for-service reimbursement structure for private service providers that has been in place for more than a decade.

Service providers, consumers and their families, and even a legislative commission have called for alternatives to fee-for-service reimbursements during the last several years.

Three dozen private agencies form the backbone of Rhode Island’s developmental disabilities system. The state relies on them to meet the requirements of a 2014 civil rights agreement mandating a network of individualized community-based daytime services by June 30, 2024 in accordance with the Integration Mandate of the Americans With Disabilities Act (ADA).

DELAY IN PART OF RATE REVIEW

A federal judge set a Dec. 1 deadline for completion of the rate review, but Pawlowski said the portion that deals with individual assessments and individual budgeting cannot be finished until mid-2023.

In August, an independent court monitor said this portion of the rate review should be completed by Oct. 31, underlining his recommendation in bold type in a report to the court.

The process and timeline involving assessments, service plans and developing individual budgets is “one of the most critical aspects of the transition to high quality person-centered practice,“ but the way these elements connect with each other is ‘‘poorly understood,‘‘ said the monitor, A. Anthony Antosh.

‘‘Person-centered practice‘‘ refers to a professional approach that that puts a client’s needs and preferences first in keeping with with the consent decree and the ADA.

Antosh recommended the state do a “comprehensive review“ of its use of the current assessment tool, the Supports Intensity Scale (SIS), citing continued problems with inaccuracies in the results.

The state made it clear a year ago that it will continue using the SIS, but during the recent presentations, the HMA-Burns spokesman , Pawlowski, that the publisher is in the process of revising it.

The second edition of the SIS is expected in January, 2023, he said. It will be incorporated into the new rate structure by mid-year, he said. The graphic below lays out additional details.

REVENUE HIKE FOR PROVIDERS

Overall, the various rate increases would hike revenues for private service providers 20 to 25 percent above current levels, Pawlowski said.

Part of the increase in private agency revenues would come from funding employment-related services, more costly than other types of daytime supports, as a separate add-on allocation.

It remains unclear how much one-on-one time with a direct care worker an individual would get under the proposed new rate model. One-on-one staffing is considered important for community integration.

Pawlowski was asked whether someone choosing one-on-one staff time exclusively would use up their budget allocation faster than someone in a small group. The short answer is “yes,” he said.

Anne LeClerc, a BHDDH official, added quickly that “it depends” on a person’s need and funding level.

On an hourly basis, the rate for one-on-one supports in the community would increase from $37.88 to $65. Not everyone will have a budget big enough to pay for one-on -one staffing for an extended period of time.

One caveat is that one-on-one staffing will be available to all who seek competitive employment in the community, regardless of the size of their individual budgets, BHDDH spokesman said.

Final answers to questions about the availability of one-on-one staffing will be directly linked to the way the new SIS version defines individual need and the funding that results from that definition.

The new system also includes a range of reimbursement rates for group supports in the community involving no more than three people for each worker.

Center-based care will continue, with its own range of reimbursement rates. Centers would be used as gathering places in the morning to prepare for community activities and places for daytime meals and personal care, Pawlowski said.

15-MINUTE BILLING UNITS

During the presentations, Pawlowski said new rate structure will continue 15 minute billing units for daytime services, giving consumers the “flexibility” to “mix and match” their choice of services and service providers.

Private agency providers for years have complained that the administrative cost and time used to bill in 15-minute increments according to staffing ratios detracts from their ability to provide the services themselves.

In one of many court-ordered activities, a cross-section of state officials and community representatives has studied 15-minute billing and found it burdensome, recommending that the 15-minute unit be replaced with one or two rates for community staffing lasting three or four hours at a time.

Pawlowski said the new model would reduce the administrative burden by eliminating the requirement to account for staffing ratios within each 15-minute billing unit.

Reimbursement tables in the proposed rate structure assume there will be five levels of funding, as there are now.

The funding levels are largely based on a person’s perceived ability or inability to complete the tasks of daily living, with the “tiers” of funding running from A, the lowest funding, to E, the highest.

“SELF-DIRECTED” CONSUMERS

About a quarter of consumers receiving developmental disabilities services do not rely on private agencies but direct their own plans, mostly with help from their families.

They are responsible for hiring direct care staff, but a fiscal intermediary handles payroll and helps them stay on track with their budgets.

Going forward, Pawlowski said, fiscal intermediaries will be limited to payroll services.

Support activities will become part of case management - a service now under review for all health and human service departments governed by the Executive Office of Health and Human Services to ensure that Rhode Island complies with federal case management rules.

The removal of support services from the role of the fiscal intermediaries will result in a slight rate decrease, Pawlowski said.

But some fiscal intermediaries listening to the presentation online said the two functions can’t be easily separated.

RESIDENTIAL OPTIONS TO WIDEN

Reimbursement rates would increase substantially for residential services except for the largest group homes, with six or more residents, where the rate reviewers assumed an economy of scale, Pawlowski said.

A few of the largest group homes would see a slight decline in funding, he said.

Rates for shared living, which Pawlowski said have remained the same since the program started, will get substantial increases. Shared living providers host adults with developmental disabilities in their homes.

For the first time, there will be an enhanced reimbursement rate for hosts who also provide all the day services for the people in their homes.

Established provider agencies that now oversee individual shared living arrangements will be required to make monthly visits to each home, Pawlowski said.

There are two new categories of residential services:

• Supervised living, a shared service for those who don’t need 24-hour care and live near each other, like residents with separate apartments in the same building who are visited by the same “floating” staffer as needed.

• Room and board arrangements in which an individual with intellectual and developmental disabilities has a roommate who is not the homeowner.

The proposed reimbursement scale also provides for “remote services” in which a worker can check in electronically and follow-up with an in-person visit if needed.

Recordings of two presentations and a packet of information on the proposed rates and other related materials have been posted to the BHDDH website at https://bhddh.ri.gov/developmental-disabilities/initiatives/rate-and-payment-methodology-review-project/public-review

Written comment from the public will be accepted until Oct. 24 at bsmith@healthmanagement.com

Graphics by HMA-Burns

RI Dodges Contempt With DD Action Plan

By Gina Macris

The Chief Judge of the U.S. District Court welcomed Rhode Island’s action plan to turn around the lives of adults with developmental disabilities, saying in a hearing Oct. 20 that the state has taken “historic and comprehensive” measures to set it on a path to comply with a 2014 civil rights consent decree.

Judge John J. McConnell, Jr. (left) approved the plan, which commits at $50 million in the next few years to stabilize and expand a skilled workforce and promises a structural overhaul of the way services are delivered and providers are paid, according to summaries provided by a lawyer for the state and an independent court monitor.

“This a major step in improving the lives” of adults with developmental disabilities, McConnell said in the hearing, which was streamed remotely via the Internet.

McConnell said that in his 30 years as a lawyer and ten years on the bench, he’s “never seen the state move as quickly, effectively and positively.”

“Make no mistake about it. Moving that mountain was a mammoth undertaking,” McConnell said.

“You have my thanks,” he said, singling out State Sen. Louis DiPalma, D-Middletown, and Kevin Savage, Director of the Division of Developmental Disabilities, for their roles in negotiating the action plan.

Without the action plan, the state could have faced fines of up to $1.5 million a month for contempt of court for continued violations of the consent decree.

The ultimate goal is the systemic restructuring of the system so that those with intellectual and developmental disabilities can live the lives they want in their communities, consistent with the Olmstead decision of the U.S. Supreme Court, McConnell said. The Olmstead decision re-affirmed the Integration Mandate of the Americans With Disabilities Act.

Making a real difference in the lives of those protected by the consent decree “will be another heavy lift,” the judge said. “That’s a long-winded way of saying, good job; there’s a lot of work ahead of you.”

Both the monitor, A. Anthony Antosh, and a lawyer for the U.S. Department of Justice (DOJ), said they will be watching very closely to measure the real-life impact of the action plan on life circumstances of individual service recipients.

Victoria Thomas, the DOJ lawyer, said she and her colleagues in the civil rights division are “cautiously optimistic” that the action plan will achieve the goals of the consent decree by the time it is set to expire in 2024.

“Recent comments indicate that there are many people in Rhode Island that are not getting what they need, want, or are entitled to get” under the law, Thomas said.

Those eligible for services say “they want to be working,” Thomas said.

Families who “rely on day services to function” are essentially trapped,” she said. “They can’t go to work and in some cases can’t leave their homes.”

To focus on the state’s progress, the DOJ and the monitor will review data every 90 days to determine what services eligible persons receive and their duration, Thomas said.

“Rhode Island businesses are eager to hire, and people with developmental disabilities are eager to work,” she said. “The action plan has multiple strategies to do that,” both on a short-term and long-term basis, Thomas said.

Antosh, the court monitor, said the action plan responds to a years-long drive to stabilize and expand the private provider workforce which the state relies on to bring it into compliance with the consent decree, and more recently, a series of court orders spelling out what that effort should look like.

The one that sent ripples through the State House said the state wages must hit $20 an hour by 2024. The action plan says the state will deliver on that pay hike, along with an interim raise, from $15.75 to $18 an hour effective July 1, 2022.

McConnell said “the court’s role is not to tell state what it should do or to run the agency,” a reference with the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH.)

“The court’s role is to ensure compliance with the consent decree. The state, after many years, agreed it has systemically violated the rights of people with developmental disabilities All parties agreed the consent decree would be the vehicle to ensure (those) rights,” McConnell said.

Antosh, meanwhile, said the significant investment in funding higher wages will be accompanied by a shift in strategy for recruiting and retaining new staff to offset the fact that the traditional population interested in caregiving jobs is shrinking.

He said there will be a public-private partnership led by the Department of Labor and Training, the Community College of Rhode Island and other workforce and educational organizations. Together, they will re-define the roles of caregivers and creating targeted training programs, professional credentialling, and career ladders.

“A major strategy is to help people to achieve individual career goals,” Antosh said.

He explained other highlights of the action plan including an upcoming rate review, which he described as “the instrument” for changes that hopefully will create a better-functioning system.

Five consulting firms have bid for the job, and the state has committed to awarding the contract by November 1, with the work to be completed in a year’s time. It will include a reimbursement rate schedule that is indexed to the cost of living, Antosh said.

He said he will push to have a finished report sooner than that. The rate review, or portions of it, should be reflected in the next three budgets, he said.

In another change intended to stabilize financing, the state for the first time will include the developmental disabilities caseload in the semi-annual Caseload Estimating Conference, giving policy makers a realistic projection of developmental disability costs as a basis for budget preparations. The first such Caseload Estimating Conference will be later this month.

There will also be changes that will help increase individuals’ access to services by decreasing administrative burdens on providers. For example, the state plans to eliminate a requirement that staffers document their time individually in 15-minute increments for each person in their care, he said.

Another requirement on its way out is linking reimbursement to pre-determined staffing ratios based on each client’s general level of independence, or lack of it. These staffing ratios do not individualize needs, except for those with the most extreme disabilities, and do not take into account the amount of support necessary to carry out a particular task. Antosh said the complicated billing system will be replaced by two different rates.

The state has said the work on the administrative changes will be done by March 31.

Other innovations in the works will aim at increasing funding for transportation enabling the Rhode Island Public Transit Authority to become a Medicaid provider and by setting aside $2 million for the acquisition of technology for people with intellectual and developmental disabilities, Antosh said.

There are already specialized 400 apps available which aim at improving the quality of life for people with varying intellectual and developmental challenges, he said.

Kate Sherlock, the lawyer representing Antosh in recent negotiations, said the will to “get there” by restructuring the system “has been there all along, among consumers, their families, providers, and state officials, but change has been held back by a lack of funding.”

The action plan is a “significant step in the right direction,” she said. “We’ll be watching carefully to see what happens.”

To read the state’s action plan, click here.

To read the monitor’s memorandum on the action plan, click here.

RI General Assembly Will Handle Court-Related DD Issues DD Issues In Regular Budget Talks

By Gina Macris

The pace of discussions for complying with a court-ordered overhaul of Rhode Island’s developmental disability system is expected to pick up as early as next week, when newly elevated Governor Daniel McKee rolls out his budget proposal for the fiscal year beginning July 1.

McKee was sworn in March 2, replacing Gina Raimondo, who resigned as governor after clearing final hurdles in Washington, DC to become Secretary of Commerce. Raimondo’s office said in mid-January that McKee, then Lt. Governor, would be responsible for submitting the budget proposal to the General Assembly.

It remains unclear to what degree, if at all, the proposed state budget will incorporate additional money for initial steps toward compliance with a federal court order enforcing a 2014 civil rights agreement.

While uncertainty about funding hovers, court-ordered discussions organized by the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) have been underway since last August to develop a path forward for providing services that will encourage integration of adults with developmental disabilities in their communities, in accordance with the 2014 consent decree and the Americans With Disabilities Act.

A recent report to Chief Judge John J. McConnell, Jr. of the U. S. District Court indicates short-term recommendations are taking shape to address some of the 16 points the judge laid out in a reform agenda last summer.

He gave the state until June 30 to develop a three-year implementation plan that will achieve full compliance with the consent decree by 2024.

Representatives of the House and Senate leadership participated in some court-ordered reform talks until McConnell issued an order Jan. 6 which said the three-year plan must include these specifics:

• a $20 minimum wage for direct care workers by fiscal 2024.

• Incorporation of the developmental disabilities caseload in the formal process for estimating the state’s public assistance obligations for budget calculations, beginning this year.

On March 3, House Speaker Joseph Shekarchi and Senate President Dominick Ruggerio issued a new statement on how they will handle legislative issues raised by the reform efforts:

“Specific issues will be analyzed and discussed in legislative committees as part of the public hearing process on pending legislation as well as the upcoming state budget.”

The two leaders continued: “The members of the General Assembly care deeply about individuals with developmental disabilities and ensuring a strong continuum of care, and the Senate President and House Speaker believe that we have an obligation as a society to provide strong services and supports for all vulnerable Rhode Islanders.”

The leadership had withdrawn from reform talks out of concern that their representatives’ participation could be perceived as tacit approval of change outside the legislative process, according to separate letters sent to McConnell Feb. 3.

Shekarchi’s and Ruggerio’s statement did not specifically mention the direct care worker wages or making the developmental disabilities numbers part of the twice-yearly Caseload Estimating Conference, the budgeting tool used by the governor and the legislature.

Development of a new approach for determining how to support the individualized plans of the developmentally disabled population is at the heart of the overhaul. The existing fee-for-service system was designed 10 years ago for congregate care, where one or two staff members could oversee as many as ten clients in a day care center or sheltered workshop. The U.S. Department of Justice found that model violated the ADA’s Integration Mandate.

In November, McConnell heard testimony that the current funding ceiling for the private provider system, roughly $268.7 million in federal/state Medicaid money, will not support integrated services, which are much more labor-intensive — and thus, more costly — than congregate care. The cost of correcting the non-compliance could increase the developmental disabilities budget by nearly 50 percent, according to one estimate.

Because of the uncertainty over funding, five workgroups organized by BHDDH are focusing on short-term changes that can ease administrative burdens on providers and make the state bureaucracy more user-friendly for the individuals served and their families, according to a progress report submitted to McConnell at the end of February.

According to the report, BHDDH expects to have detailed information by March 31 on:

• shifting from quarterly to annual per-person budget authorizations

• streamlining dozens of private provider billing codes, many of which require documentation of staff time in 15-minute increments for each client served

• simplifying the process of writing each client’s annual service plan “to reduce repeated questions, frustrations, and errors requiring correction and intervention.”

The report recommends adding a second assessment or new questions or criteria to improve the accuracy of the standardized Supports Intensity Scale-A, (SIS-A) interview, used to determine service needs and funding levels.

Improved assessments would reduce reliance on appeals. Interviewers also need training on cultural differences, it said.

Additional recommendations include:

• a training program for parents on how to approach the SIS-A, which has been the subject of frequent complaints over the years from parents

• clarification of the process for appealing funding determinations made as a result of the SIS-A, and developing ways to more quickly resolve appeals

• consolidation of separate applications for Medicaid and for Medicaid-funded services into one process

• a request for a waiver from the Centers for Medicare and Medicaid Services for Medicaid eligibility redeterminations for persons with developmental disabilities, who have life-long conditions.

The report said long-term revision of the fiscal and reimbursement system will be implemented by December, 2022.

The workgroups developing the recommendations include both state officials and representatives of the community, including individuals who themselves receive services, families, advocates, and service providers.

The groups’ recommendations are reviewed by the appropriate department-level directors and other key officials, according to the report.

Once final recommendations are analyzed and decisions made by the state, a “cohesive workplan” that will be submitted to McConnell on or before June 30 as required by an order the judge issued last July 30, the report said.

Judge Signals Stepped-Up Oversight Of RI Olmstead Consent Decree

By Gina Macris

John J. McConnell, Jr.

Chief Judge John J. McConnell, Jr. of the U.S. District Court is gearing up to order a soup-to-nuts overhaul of Rhode Island’s troubled developmental disability service system and he wants a detailed plan hammered out during the next year. 

Chronic problems exacerbated by the COVID-19 pandemic have pushed McConnell’s long-simmering concerns over the fiscal stability of developmental disability services “front and center,” as the judge put it during a public hearing in mid-May.

At that time, he asked an independent court monitor to recommend steps for ensuring the long-term survival of a reformed system that will be in full compliance with the Integration Mandate of the Americans With Disabilities Act (ADA). The proposed directive resulted from the monitor’s recommendations.

The order, sent to lawyers for comment earlier this month, says the state must fix systemic problems that pose “fiscal and administrative barriers” to compliance with a 2014 civil rights consent decree, which calls for integrated work and non-work activities based on a 40-hour week of services.

The barriers to compliance include the major pillars of a fee-for-service system the General Assembly enacted in 2011 that incentivized segregating adults with developmental disabilities in sheltered workshops and day care centers, in violation of the ADA’s Integration Mandate, according to findings of the  U.S. Department of Justice (DOJ). The Integration Mandate was re-affirmed by the U.S. Supreme Court in the 1999 Olmstead decision.

Although the last sheltered workshops closed in 2018, some center-based day programs were still in operation before the pandemic hit.

Hearing Scheduled July 30

McConnell has given state and federal lawyers until July 30 to  tell him why his three-page directive should not move forward as a formal order, with a deadline of June 30, 2021 to develop a new system that meets the needs of the roughly 4000 individuals it serves.

Lawyers for the state and the DOJ have responded with an agreed-upon list of topics to be discussed at an upcoming hearing on the status of consent decree compliance.

The agenda, filed with the court July 23, said the state would address both long-term compliance with the consent decree and the immediate pressures posed by the COVID-19 pandemic on the developmental disabilities system.

Specifically, the lawyers said they would present information on:

• Integrated employment and day services and the state’s phased reopening

• Support for providers and families during the continuing COVID pandemic

• Preparations for a potential second wave of the pandemic

• The fiscal issues and administrative barriers identified by the judge and a plan by the state to resolve them in phases, beginning with quarterly funding authorizations, staffing ratios, and the requirement to bill for daytime services in 15-minute increments.

Finally, the agenda said the discussion would include the state’s plans for substantial compliance with all requirements of the consent decree by 2024, the year it expires.

The judge’s proposed order would involve the state’s Medicaid administration, the Governor’s office, and the General Assembly in developing solutions to problems in the developmental disability service system and would require progress reports every two months between August 30 and June 30, 2021.

McConnell also wants the state to collaborate with families and providers in developing their plans.

McConnell is expected to take up the proposed order during the remote video hearing on July 30, beginning at 2 p.m. The public may sign in to attend no later than 1:45 p.m. through video or telephone, with instructions posted on the court’s public access web page, here.

COVID-19 Forced Near Shutdown Of Day Services

The coronavirus has hit hard at gains made in the number of regular jobs worked by adults with intellectual or developmental disabilities and the time they spend enjoying non-work activities as part of their communities.

A spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) indicated that about 35 percent of those who had jobs March 1 were still working at the end of May.

Non-work recreational and other activities also have been decimated, but no figures were available from BHDDH about the number of people who don’t have any daytime supports or can’t get the same number of service hours they had before the pandemic.

Parents expressed alarm about a lack of guidance on the resumption of services during a July 21 on-line forum hosted by the Community Provider Network of Rhode Island (CPNRI.)

Susan Willemsen, a parent, wrote in the chat box that accompanied the video meeting: “This is very scary, especially for the parents who need to work and your child does not understand the situation. It is very difficult to be home working 40 hours to survive and take care of a child who is 100% dependent on you. Trying to understand where we go from here.”

Tina Spears, executive director of CPNRI, said providers remain in a precarious financial position and called on the entire developmental disabilities community to press state and federal officials for more funding and priority status for group home operators to conduct on-site testing and gain access to personal protective equipment.

By all accounts, some three dozen private service providers licensed by the state to support adults with developmental disabilities were in tenuous financial condition before the coronavirus pandemic hit Rhode Island in March.

Coping with the pandemic has further exposed gaps in funding and service delivery, which in turn raise questions about the providers’ ability to survive long enough to benefit from a court-ordered restructuring without more immediate and urgent intervention. 

For example, the need for social distancing calls for one-on-one or small group staffing, preferably with the same clients consistently matched to the same support people. But the current funding structure typically will pay for six hours a week of one-on-one support, according to Spears.

Judge Spells Out Requirements

McConnell, meanwhile, indicated he wants change from the first moment an individual or family applies for services from the Division of Developmental Disabilities (DDD).

McConnell said there is a need to consolidate application procedures “for all pertinent RI services into one process.”  That includes streamlining the process for determining Medicaid eligibility and eligibility for developmental disability services, respectively, as well as any other state-funded supports a person might need.

Within the developmental disability service system itself, the judge wants the state to “review, address, and develop a strategy” for resolving problems in the following areas:

• The process and timeline for determining DDD eligibility and individual budgets, as well as the process and timeline in which individuals select private provider organizations.

• The process in which families and service providers appeal DDD’s decisions on eligibility, designated level of need, or funding level.

• The requirement that providers document each staff person’s time, in connection with each client, in 15-minute increments during the day as a condition of reimbursement.

• Reimbursements that are linked to specific staff-to-client ratios. McConnell didn’t spell out the details of how those ratios hinder integration, but one provider has offered a memorable example: The provider said the staffing ratios forced him to group together five clients with widely differing interests for job exploration in one community setting where he could supervise without help from another staffer. 

• Funding authorizations for each client that last only three months at a time, with no ability to carry forward any unused portion of the budget beyond the designated fiscal quarter. That feature, combined with the fee-for-service structure of the billing services, means that unless there is 100 percent attendance by all persons at all times, the spending ceiling can never be reached. A consultant’s study several years ago found that providers billed for an average of 85 percent of funding authorizations.

  The requirement that people with intellectual and developmental disabilities, recognized as life-long conditions, must periodically re-establish their eligibility status for services.

McConnell also asked the state to come up with:

• A clear definition of functions and activities for which funding is permitted, along with the associated rates for each.

• Different funding levels for different activities that are “responsive to individual support needs.”

• Guidance on combining individual budgets at the request of the people involved

With the state shutdown beginning in March, service providers shifted their attention to the safety of those in group homes.

A total of 10 group home residents have died from COVID-19, according to a BHDDH spokesman. As of July 21, 161 group home residents had tested positive and a total of 48 had been hospitalized at one point or another. Five people were in the hospital on July 21, the spokesman said.

Spears, the CPNRI director, explained during the virtual public forum that providers have faced unprecedented costs in securing personal protective equipment for staff, carrying out aggressive cleaning protocols and paying for overtime, while being unable to bill the state for many services.

Providers did get some emergency federal assistance channeled through the state, albeit less than what was originally promised, to continue operations through periods of the highest risk and to give temporary pay raises to staff. But those supports have now ended, Spears said, and there’s “no grand way or plan forward” for moving the system to a new normal.

Spears said a top priority is permanent pay hikes for staff, who have been chronically underpaid and have “a thousand reasons” during the pandemic to stay home.

State officials are waiting for Congress to decide on a second stimulus package before moving ahead to set the budget for the current fiscal year. The pace of budget deliberations is expected to pick up in early August, said State Sen. Louis DiPalma, D-Middletown, who is first vice-chairman of the Senate Finance Committee.

In a brief interview the day after the meeting, Spears said the imperative for moving forward with a plan for re-opening developmental disability services should flow from the state’s legal and moral responsibility, not the budget.

State officials can “sit in a holding pattern and worry about the budget all you want, but these are human lives we’re talking about,” she said.

RI DD Legislative Commission Seeks To Change Payment Methods For DD Service Providers

By Gina Macris

Louis DiPalma * All Photos By Anne Peters

Rhode Island must find an alternative to the fee-for-service system used to reimburse private agencies that provide services to adults with developmental disabilities, a special legislative commission has concluded after more than a year’s study.

The 21-member panel chaired by State Sen. Louis DiPalma, D-Middletown, is finalizing more than a dozen recommendations, most of them aimed at changing key provisions of the payment system, known as Project Sustainability, which has been in place since 2011. Then, Rhode Island’s approach to serving adults with developmental disabilities relied heavily on sheltered workshops and day centers, an approach that figured in a civil rights investigation by the U.S. Department of Justice two years later.

Rhode Island no longer has sheltered workshops, thanks to a 2014 consent decree resulting from the DOJ investigation, which calls for enabling adults with developmental disabilities to become part of their communities in accordance with the U.S. Supreme Court’s Olmstead decision reaffirming the Integration Mandate of the Americans With Disabilities Act.

But the underlying regulations of Project Sustainability, coupled with inadequate funding, still hinder the best efforts of state officials, professionals and families to help adults with developmental disabilities engage in the activities they choose in their communities, according to testimony heard by the commission.

DiPalma presented the recommendations at a Jan. 14 meeting that concluded the work of the Project Sustainability Commission but set the stage for continued engagement by a smaller steering committee and subcommittees to advance the implementation of legislative and other changes.

The commission would replace fee-for-service reimbursement with “bundled” allocations for individuals that would give providers a set sum for each client over the course of a year, providing greater flexibility in individualizing programs. One recommendation would also simplify the billing process.

The current system guarantees funding for only three months at a time, with documentation of daytime activities required in 15-minute increments. By regulation, staffing ratios are linked to one of five levels of funding a particular person receives, not to the staffing required to support a person at any given time.

In this scenario, some residents of a group home may end up going along on a housemate’s outing, even though they have no interest in it. The commission recommends such ratios be eliminated to allow providers greater flexibility in assigning staff.

The commission’s recommendations cover some of the same ground as outside consultants who are in the midst of an 18-month study of the developmental disability system at the behest of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH). The consultants are supervised by the New England States Consortium Systems Organization (NESCSO), which is expected to conclude its work June30.

DiPalma’s expectation is that NESCSO will recommend a way forward for a new funding model to support individualization and integration in the community, with an emphasis on increasing employment opportunities for adults with developmental disabilities.

Kerri Zanchi (R) Speaks while A. Kathryn Power, NewBHDDH Director, Listens

Kerri Zanchi, a commission member and director of the Division of Developmental Disabilities at BHDDH, reminded DiPalma during the Jan. 14 meeting that NESCSO was hired to provide the department with options, not to make specific recommendations on ways it should restructure.

DiPalma said he appreciated Zanchi’s remarks, but “we’re here because of 2011,” the year the General Assembly enacted Project Sustainability, with a $26-million budget cut that ignored recommendations by outside consultants. The average pay for direct care workers still falls below the benchmark of $13.97, an hour recommended by the consultants in 2011.

“We’re still trying to claw our way out of that hole,” DiPalma said. He reiterated his view that NESCSO should be asked to make recommendations, not simply suggestions.

High on DiPalma’s priority list is a multi-year effort to address critical shortages of direct care workers by gradually increasing wages to make Rhode Island competitive with Massachusetts and Connecticut, one of the funding-related recommendations supported by the commission.

He encouraged commission members to continue their advocacy in a direct and respectful manner. “Do not take no for an answer on changes that are necessary,” DiPalma said. “Do not be combative,” he said, but open the door to collaboration and compromise by outlining the problem and asking for help in figuring it out.

The Commission’s funding-related recommendations said the budgeting process should be transparent. The developmental disabilities caseload should be part of the Caseload Estimating Conference held in conjunction with the Revenue Estimating Conference twice a year by the chief fiscal officers of the governor and the legislature to better inform budget preparations regarding the state’s social service obligations, the commission said.

In addition, the state should no longer use a disability-related assessment for calculating individual funding allocations according to a secret formula, or algorithm. Instead, the commission said, the assessment, called the Supports Intensity Scale, should be used for helping planners design programs of support for adults with developmental disabilities, the purpose for which it was designed by the American Association on Intellectual and Developmental Disabilities.

To eliminate inherent conflicts of interest between the state funding apparatus and service providers, individual service programs should be written by independent planners, the commission recommended. It did not favor a separate multi-million dollar social service case-management entity, called a “Health Home,” which BHDDH hopes to set into motion with Medicaid funding to satisfy federal conflict-of-interest regulations.

The commission also wants to bring to the table a barrier cross-section of public agencies to work on eliminating barriers to integration, like challenges in transportation and employment-related services. These agencies would include the Rhode Island Public Transit Authority and the state Department of Labor and Training (DLT), in addition to BHDDH and the Office of Rehabilitation Services, as service providers, families and consumers.

DiPalma said he would like to see BHDDH ask DLT to take the lead on employment services for adults with developmental disabilities.

Among other recommendations are these:

• BHDDH should establish crisis intervention capabilities that can respond to mental health emergencies in the community and prevent costly psychiatric hospitalizations

• The state should create a seamless transition for young people and their families from high school to adult services. The existing process has been compared to “falling off a cliff.”

DiPalma said the recommendations will be finalized in the coming week to incorporate comments made at the meeting. A steering committee, including himself and seven other commission members, will remain active, setting into motion small working groups to address legislative and other issues and reconvening every three months to review progress.

He asked the commission members “to do one thing: hold yourself and each of us accountable to stay on track” on behalf of the 3,835 people who currently receive developmental disability services.

RI Faces Uphill Climb Halfway Through DD Consent Decree Implementation

Bar graph from RI’s latest report to federal court monitor indicates RI is on track to meet one of three categories of employment targets in 2019. “Youth Exit” refers to those those who left high school between 2013 and 2016. “Sheltered Workshop” and “Day Program” refer to persons who spent most of their time in those respective settings when the consent decree was signed.

By Gina Macris

Halfway through Rhode Island’s decade-long agreement with the federal government to ensure that adults with developmental disabilities can work and enjoy leisure time in the larger community:

• Rhode Island has linked 38 percent of its intellectually challenged residents to acceptable jobs, prompting a federal monitor to warn that it needs to step up its game

• Service providers argue that continued progress will take a larger financial investment than the state is making

• Success stories abound but some families remain skeptical about whether the changes will ever work for their relatives.

Five years and three months after Rhode Island signed a federal consent decree to help adults with developmental disabilities get regular jobs and lead regular lives in their communities, 857 people have found employment. Yet, 1,398 others are still waiting for the right job match or for the services they need to prepare for work.

The pace of adding individuals to the employed category has slowed dramatically. Only 37 individuals were matched with jobs during the first two quarters of the current year. To meet its overall employment target for 2019, the state will have to find suitable job placements for 199 more adults. That would require a pace in the second half of the year that is five times faster than the first half.

Though the federal consent decree was signed in 2014, meaningful efforts to comply with its terms did not get underway until two years later, when a federal judge threatened to hold Rhode Island in contempt and levy fines if it did not take numerous and precise steps to begin compliance in a systematic way. At that point, state officials were struggling even to come up with an accurate count of the number of individuals protected by the consent decree, so inadequate was its data collection.

The active census of the consent decree population has grown since 2016, when the judge ordered the state to improve its record-keeping and the monitor forced the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) and the Rhode Island Department of Education (RIDE) to look again at special education students who might be eligible for adult services.

The most recent figures show that there are 3,764 intellectually challenged adults active either with BHDDH or RIDE who covered by the consent decree.

Of that total, 211 were employed in the community prior to the consent decree. Some have signaled they don’t want to work, either because they are of retirement age or for other reasons. Nearly 1,200 others are still in school and not yet seeking jobs.

Of the 2,255 adults who must be offered employment over the life of the consent decree, 38 percent have landed jobs.

The figures are re-calculated every three months.

Employment data from the state’s report to the consent decree monitor as of June 30, 2019. broken down by categories of persons who must be offered jobs. “Youth exit” refers to those those who left high school between 2013 and 2016. “Sheltered Workshop” and “Day Program” refer to persons who spent most of their time in those respective settings when the consent decree was signed.

Rhode Island agreed to overhaul its services for the developmentally disabled population after an investigation by the U.S. Department of Justice found the state’s over-reliance on segregated sheltered workshops and day care centers violated the integration mandate of the Americans With Disabilities Act.

People with disabilities have the civil right to the supports and services they need to live as part of their communities to the extent that it is therapeutically appropriate, the U.S. Supreme Court said in the Olmstead decision of 1999, which upheld the integration mandate. In other words, integration should be the norm, not the exception.

Some people couldn’t wait to get out of sheltered workshops when the consent decree was signed and quickly found jobs in the community with a little bit of assistance. But some families with sons and daughters who have more complex needs saw sheltered workshops close without any transition plan. For some of them, the consent decree continues to represent a sense of loss.

At a recent public forum, Kerri Zanchi, director of the Division of Developmental Disabilities (DDD), and Brian Gosselin, the state’s consent decree coordinator, had just finished applauding the successes of those who have found jobs or are on their way to shaping their careers, when Trudy Chartier spoke up on behalf of her daughter.

Trudy Chartier * all photos by Anne Peters

Her daughter is 55, deaf, has intellectual and behavioral problems and uses a wheelchair, Chartier said. She wants a job in the community and she’s been looking for five years.

Her daughter was in a sheltered workshop for a while, Chartier said, and “she loved it.”

“She didn’t care about making $2 an hour,” her mother said, and she made friends there. Now, she said her daughter “is not getting anywhere” and is “so dissatisfied.”

At the age of 80, Chartier said, she doesn’t have the energy she once had to help her daughter change things.

Later, Douglas Porch sounded a similar concern. “I can understand that the idea is to get them into the community, but what it’s actually done is destroyed my daughter’s community, because you’ve taken away her friends.”

“She’s in a group home, with nothing for her to do,” Porch said.

Zanchi, the DDD director, said that the consent decree certainly has changed the way people receive services. The intent is “not to isolate, but the opposite, to build communities,” she said.

“If that’s not working and it sounds like it’s not, we need to hear about that,” Zanchi said. “We can help you so that she can engage with her peers more effectively.”

Another parent, Greg Mroczek, also spoke up. “In terms of all the possible models, isn’t a sheltered workshop for a segment of the DD population the best possible model? Isn’t that what people are saying? It worked for my daughter as well,” he said, and nothing has replaced it.

Kerri Zanchi

He asked whether the sheltered workshop is “off the table” in “any way, shape or form” in Rhode Island.

Zanchi talked about the state’s Employment First policy, which values full integration and“investing in the skills and talent of every person we support.”

“We know that individuals of all abilities have had successful employment outcomes. We also know that employment is not necessarily what everybody wants,” Zanchi said.

“Striking that balance is a challenge,” she said. The state’s developmental disability service system and and its partners are working hard to help meet people’s needs, Zanchi said.

Rebecca Boss

When Zanchi was hired at the start of 2017, she was the first professional in developmental disability services to run the Division of Developmental Disabilities in about a decade.

Zanchi and Rebecca Boss, the BHDDH director, have improved the bureaucratic infrastructure to foster employment, professional development, quality control, and communications with families and consumers and the private agencies the department relies on to deliver services that will meet the monitor’s standards.

For example, the developmental disabilities staff has been expanded and reorganized. An electronic data management system has been introduced. BHDDH invited providers and representatives of the community to the table to overhaul regulations governing the operations of the service providers and has maintained a quality assurance advisory council, with community representation.

Broadly speaking, the leadership of Boss and Zanchi has set the tone for a philosophical shift in which employment is part of a long-range campaign to open the door to self-determination for adults with developmental disabilities – in keeping with the mandates of the consent decree. The state’s last sheltered workshop closed in 2018.

The consent decree also has fostered a revival of advocacy in the community and the legislature, where there had been a vacuum once an older generation of leaders had passed on.

So why isn’t the glass half full at the halfway point in the decade-long life of the consent decree? In a word, money.

Advocates say a central issue is the lack of an investment in the ability of the system to reach more people with the array of services that will open doors and enable them to find their places in the community.

To satisfy the requirements of the consent decree, the state relies on the efforts of private agencies that provide the actual direct services.

The federal monitor in the consent decree case, Charles Moseley, has asked the state to get to the bottom of what he described as a lack of “capacity” on the part of these private agencies to take on new clients.

BHDDH is circling around the funding issue with an outside review of the fee-for-service rate structure governing developmental disability services. That analysis is designed to expand the analytical capabilities BHDDH, leaving the policy decisions to the department leadership.

Advocates for adults with developmental disabilities, most prominently state Senator Louis DiPalma, D-Middletown, say there must be a public discussion about how much money it will take in the long run to complete the transformation from sheltered workshops and day care centers into one that assists people in finding their way in life. DiPalma chairs a special legislative commission studying the current fee-for-service system.

In the meantime, DDD is soliciting a proposal for the third iteration of its performance-based supported employment program, which is designed to focus on people who have never held a job. This group includes young people completing high school and seeking adult services for the first time, as well as adults who face multiple challenges and would find it difficult to fill the standard job descriptions put out by employers.

The new Person-Centered Supported Employment Performance Program (PCSEPP 3.0) is expected to launch Jan.1 with an emphasis on “customized” employment, tailored to match an individual’s strengths and interests with the needs of an employer who is willing to carve up the work at hand in a non-traditional way.

The concept of customization is not new.

In Rhode Island, a few adults with developmental disabilities have had customized employment for many years, most often arranged with the support of their families, who hire staff and direct a unique array of services for them rather than relying on an agency.

In addition, the Rhode Island Council on Developmental Disabilities promotes self-employment, a form of customization, through a business incubator created with the help of the Real Pathways RI Project sponsored by the Governor’s Workforce Board.

The DD Council highlights the products and services of self-employed adults with developmental disabilities as part of its annual holiday shopping event, Small Business Saturday Shop RI, scheduled this year for Nov. 30 at the Crowne Plaza Hotel in Warwick.

The U.S. Department of Labor defines customized employment as a “flexible process designed to personalize the employment relationship between a job candidate and an employer in a way that meets the needs of both. It is based on an individualized determination of the strengths, needs, and interests of the person with a disability, and is also designed to meet the specific needs of the employer.”

Since the supported employment program started in 2017, providers have expressed concerns that, because it is tied to the fee-for-service reimbursement system, it does pay for initial investments the agencies might have to make to participate.

Those concerns persisted during a meeting between DDD officials and potential applicants for the customized employment program in mid July. At the providers’ request, DDD has extended the application deadline to October 4.

Womazetta Jones

The state’s new Secretary of Health and Human Services, Womazetta Jones, has promised to be a careful listener to the concerns of the developmental disability community.

Speaking at the recent public forum, after just eight days on the job, Jones acknowledged the state’s efforts to improve services for adults with developmental disabilities but also cautioned against complacency.

Even though the state has substantially increased funding for developmental disabilities in recent years and gained “stable and effective leadership” at BHDDH, “that doesn’t mean anyone in this room or state government is content with recent progress,” she said.

“The moment we think we don’t have more to do, is the moment we have lost our way,” Jones said, signaling that she is available for further discussion of issues affecting people with developmental disabilities.

RI DD Rate Reviewers Asked To Fix Payment System That Still Promotes Segregated Care

By Gina Macris

This article was updated June 17 with a response from the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals.

The Rhode Island state agency which funds services for adults with developmental disabilities has acknowledged for the first time that its underlying reimbursement system for private providers is structurally deficient for complying with the Americans With Disabilities Act as required by a 2014 federal civil rights decree.

While the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has pursued services promoting greater independence for adults with developmental disabilities, “the underlying reimbursement system has lagged,” according to a statement of the scope of work outlined for a consortium tasked with reviewing reimbursement rates.

The rate structure “is grounded in past practices and cost bases associated with the provision of services in the sheltered workshop setting,” BHDDH officials wrote.

“In order to adequately meet consumers’ needs, providers have been paid supplemental funds to address the deficiency in the payment rates,” BHDDH explained in the contract.

BHDDH has a contract with the New England States Consortium Systems Organization (NESCSO) to update a rate structure that has not been reviewed for eight years and to suggest alternates to the current payment methods.

In describing the work ahead for NESCSO, BHDDH says it is:

“seeking to further promote the development of a service system and associated reimbursement arrangements that maximize the opportunity for persons with DD to participate to the fullest possible in community-based activities.”

In 2014 the U.S. Department of Justice found that the reimbursement system incentivized segregated care in sheltered workshops and day centers in violation of the Integration Mandate of the ADA, reinforced by the U.S. Supreme Court in the Olmstead decision.

The Obama administration began vigorously enforcing the Olmstead decision in 2009, but the consent decree in Rhode Island was the first settlement that addressed segregation in daytime services rather than housing.

The consent decree provides a decade-long period of federal oversight of the state’s efforts to change the system. Enforcement of the consent decree entered its sixth year April 9. It will take at least another year for changes in rates and payment methods to go into effect, with the approval of the General Assembly. Enforcement of the decree is set to expire in 2024, but the state would have to show substantial compliance before federal oversight ends.

While some improvements in services have been made, the contract with NESCSO indicates that BHDDH officials believe the reimbursement system has held back compliance efforts.

Staffing Ratios Hinder Needed Flexibility

The underlying problem, said the BHDDH director in an interview, is a rule that requires a ratio of 60 percent funding for community-based activities and 40 percent funding for center-based daytime care in each client’s individual authorization.

The contract language alludes to this situation in describing staffing ratios. It says two areas of “particular focus” are daytime rates paid for employment-related and non-work services. In sheltered settings, for example, there might be one worker for every ten clients. But in the community the number of clients for each worker would have to be much smaller.

Rebecca Boss, the BHDDH director, said the department seeks a “predictable rate structure not driven by very precise ratios” but rather by the needs and preferences of individual clients.

The supplemental payments intended to mitigate the deficiencies in the underlying system “are an increasing portion of overall payments, reflecting the inadequacy of the current rates,” the contract language explained.

According to department officials, that language was meant to refer to the historical trend, in which supplemental payments had increased to as much as $7.8 million in a three-month period.

Boss froze new approvals at the end of 2017, except for emergency health and safety considerations and a couple other narrowly defined exceptions, to try to curb a multi-million dollar deficit at a time when Governor Gina Raimondo seemed inclined to cut developmental disability services significantly.

According to records BHDDH turns in to the General Assembly every month, the supplemental payments from January through March of this year have declined to $3.6 million, about half the total for the same period in 2018.

Historically, supplemental payments have been awarded only when consumers, families, or providers have made successful appeals of individual authorizations. The appeals, which often have required considerable time and energy, must be made annually, or the authorization reverts to the original amount. The appeals process is but one facet of what many families and providers describe as an unstable system.

Kerri Zanchi, director of the Division of Developmental Disabilities, said supplemental payments are still a big part of reimbursements to private providers, and BHDDH wants NESCSO and its consultants to scrutinize them as part of the review process.

Study Commission To Hear from NESCSO

The rate review coincides with the work of a special legislative commission studying the current reimbursement system, called Project Sustainability.

On June 18, the commission will meet to hear presentations about employment and transportation issues from Scott Jensen, director of the Department of Labor and Training; and from Scott Avedesian, CEO of the Rhode Island Public Transit Authority.

On June 25, the executive director of NESCSO, Elena Nicolella, is scheduled to appear before the commission to give an update on the rate review now being conducted by four consultants under NESCSO’s supervision.

In the meantime, some commission members have given BHDDH their own statements on how they think consultants should approach the work and their ideas for a new system of services that allow consumers and their families to shape the way state funds are used.

A spokeswoman for providers has urged NESCSO and its consultants to gain a thorough understanding of what it costs for a private agency to provide services under the terms of recently-revised regulations for provider operations and quality certification standards.

These bureaucratic steps are part of the state’s efforts to comply with the consent decree and the federal Medicaid Home And Community Based Final Rule (HCBS). Like the consent decree, HCBS embraces the integration mandate of the ADA, but it is a nationwide rule applying to all community-based services funded by Medicaid.

Paradox In Unspent Funds For Employment

Tina Spears, executive director of the Community Provider Network of Rhode Island, warned that simply looking at the way providers utilize the current reimbursement model, which is based on segregated care, will not give the complete picture of the needs of the system.

She did not mention specifics, but a case in point is the performance-based supported employment program, which was funded by a $6.8 million allocation made by the General Assembly in the fiscal year that began July 1, 2016. That allocation still has not been completely spent.

Excluding a start-up period from January through June of 2017, the program spent $2.5 million the first year, from July 1, 2017 through June 30, 2018. It’s expected to spend $4 million in the fiscal year ending June 30, according to a BHDDH spokesman.

Providers initially complained that they could not meet their costs with the series of one-time incentives offered by the program, which was built on same reimbursement system designed for center-based care.

Incentives and enhancements were made more generous during the second year, and negotiations are underway for a third year of the program.

In the meantime, Rhode Island’s last sheltered workshop closed last year and BHDDH says community-based, competitive employment has increased to about 29 percent of adults with developmental disabilities.

A study released by two nationwide associations of providers in January said Rhode Island’s rate of competitive employment was about 19 percent, but that figure dated from 2015. The “Case for Inclusion” ranked Rhode Island 32nd in the nation on its integration efforts. It was compiled by ANCOR - the American Network of Community Options and Resources, and UCP – United Cerebral Palsy.

Consumers Want More Control Over Money Assigned To Them

Kevin Nerney, executive director of the Rhode Island Developmental Disabilities Council, and Kelly Donovan, who receives state-funded supports, each called for a system that allows greater consumer control of state funding and greater flexibility in the way it is used.

The state should “ensure that funding is available across all imaginable living arrangements,” particularly in situations where a consumer owns or rents a property and a caregiver or family would like to move in. The caregiver or consumer should be allowed a stipend, as is permitted in many other states, to make this type of arrangement viable, Nerney said.

The state should also ensure that adults with developmental disabilities have the support of familiar staff while they are hospitalized to avoid the trauma of being in an unfamiliar environment where they can neither make themselves understood nor understand what is being said to them, Nerney said.

In addition, the state should adopt a way to assess the support a person receives from family or friends in deciding funding levels. While most of those receiving services from the Division of Developmental Disabilities live in the family home, that home may include a large healthy family, a single aging parent, or a grandparent with Alzheimer’s and a sibling who also has significant needs for support, Nerney said.

And he called for more funding for those hired by self-directed consumers and their families to write support plans necessary to qualify for state funding. The expectations for the plan writers have multiplied over the last 20 years but the fees remains the same at $500 for the initial plan and $350 for an annual renewal, Nerney said. There should be an allowance for self-directed families who need ongoing coordination of services, he said.

Kelly Donovan, who herself receives services from BHDDH gave a concrete example of what greater control and flexibility might look like.

She said people should be able to enjoy an outing without:

A: going home early because a staffer’s shift ends

B: taking everyone in your group home with you, even if one or more of them really didn’t want to come.

“People should be able to have their designated time to themselves and opportunities to be involved in community activities,” she said.

The public may submit comments or questions about the rate review process by email at BHDDH.AskDD@bhddh.ri.gov. Please copy and paste the email address into your email program, or get a link by visiting http://www.bhddh.ri.gov/developmentaldisabilities/community_forums_event.php

In response to this article, Randal Edgar, a spokesman for BHDDH, released the following statement on June 17:

The article published on June 12 on the Olmstead Updates blog presents a misleading picture of Rhode Island’s system of care for adults with developmental disabilities.

The headline claims this system “promotes segregated care.”

This assertion is false.

The article attempts to back up this assertion up by referring to language in a state contract with a consultant that is reviewing the rates paid to DD providers. But in referencing the contract language, the article misreads the intent of that language.

The contract language speaks from a historical perspective. It states that while the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals has pursued the development of “a services system that supports greater independence” for the DD population, “the underlying reimbursement system has lagged.” It goes on to say that the “basis for the development of prevailing rates is grounded in past practices and cost bases associated with the provision of services in the sheltered workshop setting.”

Acknowledging that the existing rates are grounded in past practices and need to be updated is not the same as saying the system as it operates today promotes segregated care, and in saying it does, the article ignores and/or minimizes many steps the department has taken to improve the care provided to adults with developmental disabilities. It should be noted that the reporter met with BHDDH officials for more than an hour but did not press this assertion and obtain their view of the contract language.

The article is wrong again when it states that department froze new approvals for supplemental payments in 2017 to help offset a budget deficit. The department reduced those approvals, applying more stringent standards, not because of a possible budget deficit but because this made sense from a policy standpoint.

Finally, the article gives voice to people outside the department, asking them to describe where the DD care system should go, without giving BHDDH officials a chance to share their vision. In the process, it conveys a false impression that BHDDH officials are not passionate about moving this system forward.

We are disappointed that the article did not present a more complete and accurate picture.

Separately, the public may submit comments or questions about the rate review process by email at BHDDH.AskDD@bhddh.ri.gov. Please copy and paste the email address into your email program, or get a link by visiting http://www.bhddh.ri.gov/developmentaldisabilities/community_forums_event.php

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

A. Anthony Antosh

By Gina Macris

Other than moving people out of institutional living with the closing of the Ladd School in 1994, Rhode Island hasn’t made life appreciably better for adults with developmental disabilities, according to state’s most prominent academic in the field.

A. Anthony Antosh, director of the Sherlock Center on Disabilities at Rhode Island College, said that every week he gets calls from parents who say how “complicated it has gotten” to deal with state-funded services and “how unstable the system is.”

“Our system is not institutional, but it’s not far from that,” Antosh said. He has been active as an educator and researcher in the field of developmental disabilities since the 1970s and was a plaintiff in a lawsuit that ultimately closed the Ladd School.

If the state transfers control of its services – even partially -- to the people who are served, “you begin to change what the system looks like,” he said. Individuals will become “more responsible for themselves.”

Antosh made the comments May 22 as a member of the Project Sustainability Commission, a special legislative commission studying the current state of developmental disability services. Antosh and other commissioners outlined their reform suggestions at the session.

He zeroed in on a requirement now in place that sets out ratios for staffing according to the degree to which a person is perceived to be disabled – a “naive notion” in his view. The ratios allow one-to-one or small group staffing only for the most challenged individuals and were designed for day care facilities or sheltered workshops.

The funding rule remains in place even though the state in April entered the sixth year of a ten-year agreement with the U.S. Department of Justice requiring it to change to an integrated, community-based system of care. The last sheltered workshop in Rhode Island closed last year.

Antosh said an alternative structure could be a community support team responsible for a certain number of people. The team would figure out how to arrange its time to meet the individual needs of its clients in the community.

DD Council Weighs In

Kevin Nerney, executive director of the Rhode Island Developmental Disabilities Council, also said that he wanted a system “driven by the person and the family.”

There is much talk about “person-centered planning,” he said, but “sometimes, the person is at the center and the other people are doing the planning.”

Nerney recommended that the person receiving services and the family take the lead in drawing up a plan for life in the community. They would be guided by an independent facilitator, not by someone who works for the state funding agency or a private service provider.

The individual and the family would have control over the budget assigned to them and would be able to hire whom they choose to provide paid supports.

Until recently, Nerney said, individuals and families who direct their own services were allowed to use the money allotted to them only to pay for support workers.

Those who choose to receive services from an agency should at least know how much money goes into each category of support, Nerney said.

Antosh, meanwhile, said that funding should be organized by function so that individuals and families have a clearer idea of its purpose.

The notion that plan-making and case management should be separated from the funding agency and the service provider is already embedded in federal Medicaid rules under the title of “conflict free case management.”

“Health Home” Merits Debated

The state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) wants to set up a Medicaid-funded “Health Home” as an independent planning and case management entity for persons with developmental disabilities.

But some commission members have wondered aloud whether a Health Home would be just another layer of bureaucracy.

And Nerney said most people don’t even like the term “conflict-free case management.”

Antosh agreed that “conflict-free case management” should be made simple. The state should have a list of trained independent facilitators, or “navigators,” as he referred to them, to help individuals and families develop plans and mediate any differences among those contributing to an individual plan.

Individuals and families should have a choice of managing their own services, signing up with an agency, or designing a customized combination of self-directed supports and agency-managed services, he said.

Tom Kane, Left, With Antosh

Tom Kane, who represented a service provider’s perspective, agreed that the people should be in control, with the services following their needs.

To lay the groundwork for real choice, the system should help adults with developmental disabilities “discover their options,” and providers should follow their lead in delivering services, said Kane, CEO of AccessPoint RI.

Kane recommended a concerted statewide marketing campaign aimed at employers that promotes adults with developmental disabilities as an enthusiastic and reliable workforce.

Several other recommendations from Kane echoed recurring issues among members of the commission including:

• A need for funding that reflects the real costs of services, as well as salaries that will attract and retain talented employees. Recommendations that arise from the review of the funding model and rates that is now underway should be presented to the General Assembly “without edit,” Kane said, and should be used as the basis of funding a new system. He noted that the last review came up with recommendations which the legislature never used.

• Concerns about a lack of housing options

• A need for consumers’ access to technology to help them achieve the greatest independence possible.

A Call For A More Stable Funding Cycle

All the commission members, except Antosh, favor annualized budgets for individuals. Antosh said arrangements should be made in two-year increments for funding and services. He also said that there should be a single streamlined application process, no matter the source of the funding, which may come from BHDDH, the Office of Rehabilitative Services, or the Department of Labor and Training.

Families of youngsters deemed eligible for adult services while they are still in high school should also get a budget for exploratory activities, because they don’t know what choices are possible until they experience various options, he said.

The state now determines funding levels annually on paper but reserves the right to change the amount actually released for spending every three months – on a quarterly basis. Families and providers agree that the quarterly allocation - the only one like it in the nation – is a major impediment to the systematic planning necessary for a stable system of supports.

Kane provided some history on the quarterly allocations:

In 2010, he said, payments to private service providers ran over budget and the state told them their reimbursements would be cut for two months – one month retroactively – to make up the difference.

Some providers sued, Kane said, arguing that the state was still obliged to fulfill its contract with them. The providers won, but the next year, in 2011, BHDDH introduced quarterly allocations along with Project Sustainability, the fee-for-service system that significantly reduced reimbursements and is at the center of the commission’s deliberations.

Mental Health Services Lag

The issue of mental health received considerable attention, with Nerney recommending that the system develop and implement a variety of strategies to prevent crises or resolve them once they occur.

Nerney supported the idea of a mobile crisis unit that he said was suggested by Gloria Quinn, Executive Director of West Bay Residential Services, at the previous commission meeting May 6.

Quinn recommended convening a group to explore successful practices in supporting those with complex mental health and behavioral needs in the community, minimizing the need for excessive psychiatric hospitalization.

Rebecca Boss, the BHDDH executive director, and Kerri Zanchi, the Director of the Division of Developmental Disabilities, both indicated they are aware of a need for greater support and intervention in the area of behavioral health for persons with developmental disabilities.

“We don’t have a good handle on the needs of families in crisis,” Zanchi said.

The assessment tool that BHDDH uses to determine funding levels, the Supports Intensity Scale (SIS), garnered a new round of criticism, despite efforts in 2016 to reframe the questions it asks to better identify support needs and the re-training of all the social workers who conduct the highly scripted interviews..

L To R, Kerri ZanCHI, Brian Gosselin, Acting Consent Decree Coordinator; Christopher Semonelli, Peter Quattromani. All Are Commission Members

Critic Says Assessment Method Is “Demeaning”

Peter Quattromani, executive director of United Cerebral Palsy RI and spokesman for the Providers Council, said the state should return to using the Personal Capacity Inventory to identify funding needs because it reflects a more collaborative approach than the SIS.

Quattromani said he sat in on several SIS interviews and found the SIS to be a “very demeaning experience” with “very intrusive questions.” In some cases the interview varied, depending on who was asking the questions, he said.

Antosh said when parents experience the SIS for the first time, “they are absolutely horrified by it.”

He suggested that when the SIS was first piloted, it was not intrusive. It was “a conversation”, albeit a lengthy one, lasting for or five hours, Antosh said. Afterward the responses were correlated with funding needs.

Antosh said the SIS was designed to help professionals develop support plans, not as a funding tool, even though Rhode Island and other states use it that way.

Antosh said he would recommend that Rhode Island design its own assessment tool, not necessarily eliminating the SIS but using multiple factors to determine funding, including an exploration of behavioral health issues and other areas not covered in the SIS.

Heather Mincey, assistant director of the Division of Developmental Disabilities, said not all the comments abut the SIS process she has received from families have been negative, with some parents saying it “wasn’t all that bad.”

The May 22 meeting concluded individual members’ presentations on recommendations for change, which will be reviewed and consolidated along common themes and incorporated into a plan for moving forward, said the Commission chairman, Sen. Louis DiPalma, D-Middletown.

He said he anticipated a five-year process for implementation, with the aim of making Rhode Island achieve top national ranking among state systems of developmental disability services.

In the meantime, DiPalma said that he next commission meeting, on June 18, will feature remarks by the state Director of Labor and Training, Scott R. Jensen; and the CEO of the Rhode Island Public Transit Authority, Scott Avedesian Employment and transportation are two topics that have sparked a lot of complaints, DiPalma said. He said he expects the commission to continue meeting into July.

RI BHDDH Wants Consultants' Comprehensive ‘Best Strategies’ For Integrated DD System

By Gina Macris

The most recent meeting of Rhode Island’s “Project Sustainability” commission Aoril 25 left members surprised by news that an outside review of Rhode Island’s rates and reimbursement methods for private providers of developmental disability services will not conclude with consultants making dollars-and-cents recommendations for a new scale of payments.

In a follow-up question, Developmental Disability News asked officials of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to elaborate on the reasons for the approach it has taken in commissioning the outside review, which is intended to help the state meet the requirements of a 2014 federal civil rights decree..

In a statement, a spokesman said the department is looking for the “best strategies” for developing and paying for an “integrated and individualized system of services” - characteristics which would comply with the consent decree.

That decree draws on the authority of the U.S. Supreme Court’s Olmstead decision, which reinforced the integration mandate of the Americans With Disabilities Act.

The existing reimbursement system for private agencies led to over-reliance on facility-based care and sheltered workshop employment, in violation of the integration mandate, according to findings of the U.S. Department of Justice, which laid the groundwork for the consent decree. The fee-for-service reimbursement system, called Project Sustainability, resulted to significant pay cuts for direct care workers, high turnover and a high rate of job vacancy.

“Determining how to stabilize the workforce and what to pay direct care workers is a broad question that touches on many moving parts,” said Randal Edgar, the BHDDH spokesman.

The salary of workers, called “direct support professionals,” is an important part of the rate structure, but there are other costs which are “vital to a provider’s enhanced functioning,” Edgar said. He listed these costs:

• employee benefits

• training

• supervision

• management capacity

• information technology

• connection and liaison with community

“Asking the consultants to determine just one of the vital elements would not meet the overall financial needs of the Rhode Island Developmental Disabilities system. We are looking for the consultant to identify best strategies for providing an integrated and individualized system of services and help us develop best strategies to pay for that system. But we do not think it is the consultant’s job to say what direct care workers should be paid,” Edgar said.

Anyone who has questions about the rate review may submit them to BHDDH.AskDD@bhddh.ri.gov, Edgar said. (Please copy and paste the email address.)

Meanwhile, the special legislative commission studying Project Sustainability will meet Monday at 2 p.m. in the Senate Lounge of the State House, according to its chairman, Sen. Louis DiPalma, D-Middletown.

DiPalma said the session will focus on members’ recommendations for changes to better enable adults with developmental disabilities to live the lives they want with the supports they need.

Advocates: RI Must Put Higher Value On DD Workforce To Ensure Stability In Client Services

Image courtesy of RI Capitol TV

By Gina Macris

The incremental pay increase that Rhode Island Governor Gina Raimondo proposes for those who care for adults with developmental disabilities- about 34 to 41 cents an hour - is “much appreciated,” Tom Kane, CEO of AccessPoint RI, told the House Finance Committee recently.

But “it’s not enough,” Kane added quickly.

Entry-level workers making an average of $11.44 an hour, or more experienced colleagues paid an average of $12.50 an hour, are “often helping a person eat, shower, use the bathroom, or they could be helping someone learn how to drive their car,” Kane said.

“It is a completely and utterly important job, but based on the funding available, it is not really valued by our state,” Kane continued.

“ I’ve said this in this room a number of times. A budget is a statement of values, and what we’re saying is that this work isn’t worth enough money to make a living.”

To illustrate his point, Kane told Finance Committee members that he searched for jobs on the website Indeed.com to prepare for his testimony March 13 and found a posting from a kennel seeking someone to clean cages for $14 an hour.

“Not that I would disparage any job that anyone would have,” Kane said. “I think there should be dignity in all work. I think as a society we have to say, for those who care and support the people to live in the community, to try to have the best life possible, we need to fund the agencies to pay a reasonable rate.”

Kane spoke from the perspective of some three dozen private service providers in Rhode Island, the core of the state’s developmental disability service system. These agencies are trying to make ends meet while dealing with high job turnover and high vacancy rates, as well as the costly overtime it requires to ensure the safety of the vulnerable people in their care.

In the context of the state’s fee-for-service Medicaid reimbursement system, now in its eighth year, the concerns of the providers converge with those of a 2014 federal consent decree which spells out the civil rights of people who, through an accident of birth, spend a lifetime trying each day to rise to the challenge of diverse disabilities.

And in the past year, there has been growing pressure for change, both from those overseeing the implementation of the consent decree and from an expanding chorus of advocates.

In a “Week of Action” planned by the Community Provider Network of Rhode Island (CPNRI) March 26 through 28, providers and their supporters, including consumers and their families, will fan out under the State House rotunda to buttonhole individual legislators in the hours before the bell sounds shrilly at 4 p.m. calling the House and Senate to order.

In the fiscal year beginning July 1, Raimondo has proposed a $6.4 million budget increase targeted for pay raises, including $3 million in state revenue and $3.4 million in federal Medicaid funds. This sum would raise the wages of direct support workers by what state officials estimate as 43 cents an hour.

But the leaders of CPNRI and the Provider Council, another trade association, say that to stabilize the private system of developmental disability services, providers need about $28.5 million in state revenue, which would generate a roughly equal amount in federal Medicaid payments.

“We recognize that this is a substantial amount of money, but it is a result of chronic underfunding,” said Donna Martin and Peter Quattromani in a letter to Raimondo dated Jan. 9. Until March, Martin was executive director of CPNRI. Quattromani, executive director of United Cerebral Palsy of Rhode Island, represented the Provider Council.

Their reference to “chronic underfunding” alludes to “Project Sustainability,” the fee-for service funding model enacted by the General Assembly in 2011 with a $26-million budget cut. Project Sustainability was cited by the U.S. Department of Justice in 2014 as contributing to a segregated system of services that violated the integration mandate of the Americans With Disabilities Act.

With the closing of the Ladd School in 1994, Rhode Island was once first in the nation in de-institutionalizing adults with developmental disabilities and its efforts to include former residents in everyday life in the community. Today, 25 years after the Ladd School was shuttered, Rhode Island is ranked 32nd among the states in its inclusion efforts by CPNRI’s national affiliate, the American Network of Community Options and Resources.

Project Sustainability is currently the subject of two separate reviews, one by a special legislative commission and another by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), which has hired a consultant to scrutinize both the reimbursement rates and the fee-for-service model itself.

Between 2011 and 2012, Project Sustainability exacerbated a downward trend in funding for developmental disabilities that eventually leveled off but has not caught up with the pace of inflation, despite budget increases in recent years, according to a ten-year analysis done by CPNRI. The study used state budget figures and consumer price index information kept by the state Department of Labor and Training.

Chart Courtesy of CPNRI

Low wages have put Rhode Island service providers at a disadvantage in trying to recruit a variety of personal care workers like those who work with adults with developmental disabilities, experts say.

CPNRI reports that about one in three workers leave a developmental disability job every year, mostly, they say, because they can’t pay their bills. One in five positions remain vacant, driving up the cost of overtime necessary to ensure the safety of the vulnerable people in care, according to the trade association.

PHI National, long-term care consultants, have produced a chart comparing the earnings of personal care workers in Rhode Island, Connecticut and Massachusetts that shows Rhode Island with the lowest wages and the least buying power relative to the minimum wage.

chart courtesty of PHI and CPNRI

Policy experts say that basic demographic data for the nation indicates a shortage of personal care workers in the next few decades. That was one of the key messages delivered by Mary Lee Faye, executive director of the National Association of State Directors of Developmental Disabilities Services, to the Project Sustainability study commission in January.

Meanwhile, the House Fiscal Office estimates that the governor’s proposed raise for front-line developmental disability workers would add add 41 cents to their average hourly wage, lifting it from $12.27 an hour to $12.68 an hour. The overall $6.4 million pay hike doesn’t include raises for supervisors or job development and support coordinators, the House Fiscal Advisor, Sharon Reynolds Ferland, has told the House Finance Committee.

Providers say the state’s estimates don’t match up with actual costs. The state funds 35 percent of overhead related to employment, including mandatory costs like health and dental insurance, workers compensation insurance, payroll taxes, paid time off and other items, according to a CPNRI policy paper.

In reality, providers say, these employee-related expenses cost 64 percent[1] of wages – a point CPNRI’s Martin and the Provider Council’s Quattromani made in their Jan. 9 letter to Raimondo.

Providers fill the gap between the available state and federal Medicaid funding and the actual costs of employee-related overhead by reducing the amount of the wage increase passed along to workers. Kane, in his testimony, said that for the lowest-paid direct care workers, Raimondo’s planned pay increase will not even cover the cost of a separate proposal she has made to increase the state’s minimum wage for all workers from $10.50 to $11.10.

In the last few years, individuals with developmental disabilities, their families, and providers have gained legislative advocates, most prominently Sen. Louis DiPalma, D-Middletown, who is the first vice-president of the Senate Finance Committee.

DiPalma, as chairman of the special legislative commission studying Project Sustainability, convinced a consultant involved in developing that fee-for-service model to return to Rhode Island and testify about his work last November.

Mark Podrazik, a principal in the Arizona-based Burns & Associates, made it clear that Project Sustainability was shaped in a frantic effort to control costs.

Mark Podrazik * Photo By Anne Peters

The firm ultimately was paid a total of $1.4 million to develop Project Sustainability and monitor how it affected spending for developmental disabilities services. (The funding model contains no provisions for measuring the impact of services on individuals.)

Podrazik testified that some of Burn’s key recommendations were ignored, including a proposed base pay of $13.97 an hour for direct care workers that would increase within a year or two to $15 an hour. That was in 2011.

Today, eight years later, advocates are still chasing that $15-hour wage. About a month ago, DiPalma and Rep. Evan Shanley, D-Warwick, introduced companion bills to raise direct care workers’ pay to $15 an hour by July 1, 2020. The chairman of the Senate Finance Committee, William D. Conley, was among the co-sponsors of DiPalma’s bill.

More recently, DiPalma introduced a second bill that would require all private human service agencies under contract with the state to pay their employees at least 44 percent above the minimum wage at any given time. Both Conley and Senate President Dominick Ruggerio have signed on to this bill as co-sponsors.

A year ago at this time, Raimondo had proposed an $18.4 million cut in developmental disability services for reasons that were never spelled out in public. Raimondo rejected warnings of(BHDDH) that the move would result in waiting lists for services or cuts in programming.

The proposed cut appeared to be unacceptable to an independent court monitor who continues to oversee implementation of the 2014 consent decree. The agreement calls for integrated, community-based services that are inherently more costly than the facility-based system embedded in Project Sustainability.

In May, 2018, the monitor, Charles Moseley, obtained written assurances from Raimondo that she would continue to support the work of the consent decree, which in the moment meant restoring the almost all the $18-million cut.

In the courtroom, the judge who periodically oversees the status of the consent decree, John j. McConnell, Jr. of U.S. District Court, has indicated his willingness to issue orders to ensure that specific goals of the consent decree are met. At the same time, he said he couldn’t order the state to spend a certain amount to achieve them.

Meanwhile, Moseley has continued to keep abreast of budget developments. In February he wrote McConnell, saying Raimondo’s proposed budget “appears adequate” to cover a deficit in the current fiscal year and fund the consent decree in the budget beginning July 1.

Without mentioning how the Governor may have calculated developmental disability budgets in the past, Moseley made a point of saying he has received assurances that the latest figures are based on real-time data about the projected use of developmental disability services.

The state’s lawyer, Marc DeSisto, has assured him that “the Governor’s recommended budget accepts the most up-to-date projections for financing the current costs of the system to ensure no changes for individuals with DD and continued commitment to achieving Consent Decree outcomes,” Moseley wrote the judge.

Moseley put the current working budget for the private system of developmental disability services at about $229.4 million. Raimondo’s proposal adds about $4 million to finish the current fiscal year, for a total of $233.4 million. Moseley said the increase includes:

· $1 million for the estimated growth in the number of people receiving services

· $1.3 million for increased costs of providing services

· $645,000 to compensate for unrealized savings in moving group home residents into less costly residential options

· $500,000 in other priorities.

In the fiscal year beginning July 1, Moseley said, Raimondo would add about $7.3 million to the private developmental disability system, for a total of $240.2 million. That figure includes:

• $516,000 for continued growth in the number of people receiving services

• $2.7 million for increased costs in providing services.

• $6.4 million for the wage increase to direct care staff.

Those totals are offset by about $1.3 million in increased expectations for savings in residential costs and another million in savings from a reform initiative that didn’t start on time.

Moseley said all his figures were rounded off.

Deep in the background, BHDDH is quietly gearing up for a top-to-bottom analysis of Project Sustainability itself – a move applauded by DiPalma, providers, families and consumers. The lack of flexibility in services provided by Project Sustainability also has drawn the criticism of the court monitor.

Providers have said the funding formula does not allow them to plan on services for longer than three months at a time and makes it difficult for them to base their services in the community.

For example, Project Sustainability assigns staffing ratios according to the degree to which a person may be unable to do basic things independently, but doesn’t take into account the resources that person might need to get to a job – or hockey game – in the community.

Project Sustainability originally made it difficult for individuals to hold jobs in the community by providing work-related services only at the expense of other kinds of daytime supports.

In 2017, to comply with the work goals of the consent decree, BHDDH launched an add-on program of performance payments for providers for placing clients in community-based employment and for meeting job-retention goals.

DiPalma has said it is imperative that BHDDH finish a new rate model for private developmental disability services in time for Raimondo to introduce her budget to the General Assembly next January.

To satisfy the consent decree, the new design would have to focus on helping individuals lead regular lives in the community. Such a model would inevitably demand a greater financial commitment from the state and pose a new test of lawmakers’ values.

RI DD Study Commission To Meet March 28 To Begin Airing Recommendations For Change

By Gina Macris

The special legislative commission studying Project Sustainability, Rhode Island’s fee-for-service funding model for adult developmental disability services, will resume deliberations March 28, according to its chairman, Sen. Louis DiPalma, D-Middletown.

The commission last met in January, hearing testimony on best practices from one national expert and another from Vermont, where the system appears to be closely aligned with the needs and preferences of individuals.

DiPalma said he has spent the intervening weeks meeting one-on-one with commission members who represent the state and various segments of the developmental disability community to jump-start their analysis of expert testimony the commission has received since last fall. By the time of the March 28 meeting, DiPalma said, he expects commission members to be ready to make well-developed recommendations that identify concrete goals and the strategies for achieving them.

DiPalma said the vision of the commission is to have a more individualized, or “person-centered” system within the next five years.

He said he expects it will take two meetings to fully air the members’ recommendations on how to get there.

A review of Project Sustainability’s rates and the fee-for-service model itself would have been the commission’s first recommendation, if the state had not already launched that project, DiPalma said.

“The reimbursement model is the foundation and is pivotal to everything that is done,” he said. Project Sustainability, enacted by the General Assembly in 2011, did not reduce services or create waiting lists but was implemented on the backs of private providers and their employees, DiPalma said.

Project Sustainability also has been criticized by the U.S. Department of Justice, which found that it incentivized segregated services for adults with developmental disabilities, in violation of the integration mandate of the Americans with Disabilities Act. That finding and others resulted in a 2014 consent decree, which authorizes broad federal oversight of the state’s efforts to transform its system to a network of community-based, individualized services that put the consumer first.

The state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) recently hired the non-profit New England States Consortium Systems Organization as a consultant in reviewing the fee-for-service model and its rates.

DiPalma has said it is imperative that the review be completed in time for Governor Gina Raimondo to submit her budget proposal to the General Assembly in January, 2020. He said he believes the commission can have an oversight role on the implementation of any changes in the rate model that BHDDH recommends.

DiPalma said the commission meeting on Thursday, March 28, will run from 2-4 p.m. in the Senate Lounge at the State House.

RI Senate DD Commission To Hear Options For Changing Funding Model From Two Experts

By Gina Macris

Two experts with broad experience in developmental disabilities will provide their perspectives on best practices Tuesday, Jan. 8 at the next meeting of the Rhode Island Senate commission studying “Project Sustainability,” the state’s much-criticized fee-for-service reimbursement system for private service providers.

Mary Lee Fay is executive director of the National Association of State Directors of Developmental Disabilities Services (NASDDDS), based in Alexandria, VA.

William Ashe helped develop Vermont’s current “bundled” payment system. So-called “bundled” payments cover a defined set of services for a specific period of time. The system allows for individualized funding around each person’s unique needs, according to a description of the program Ashe wrote for the Vermont legislature in 2016. He is also involved in current efforts to update the Vermont payment system.

Ashe has experience in state government in Massachusetts and as a longtime private provider of developmental disability services in Vermont.

He has collaborated with the independent federal court monitor who is overseeing Rhode Island’s compliance with a 2014 federal consent decree intended to desegregate the state’s developmental disability service. Ashe has accompanied the monitor, Charles Moseley, on site visits and has written reports that have been incorporated into Moseley’s recommendations to the U.S. District Court.

Fay worked for much of her career for the state of Oregon, becoming director of developmental disabilities, a post she held for 11 years before she moved to NASDDDS in 2012. She is credited with leading the way for Oregon to become a leader in high quality services that allow adults with developmental disabilities more control over their lives.

For her first three years at NASDDDS, Fay focused on working with states to engage adults with developmental disabilities with their communities. She was named executive director in 2015.

Both Ashe and Fay were recommended to the commission by Moseley, the monitor in the consent decree case.

According to a spokeswoman for the commission chairman, Sen. Louis DiPalma, D-Middletown, Moseley said both speakers:

• are familiar with the way different states manage services

• are familiar with DD funding policies, practices, and requirements under Medicaid;

• understand rates, rate setting, and provider billing processes;

• understand the impact that funding has on the ability of individuals to live and experience full, productive, and integrated lives; and

• understand approaches other states are using and lessons learned by their successes and challenges.

The Jan. 8 Commission meeting will be held from 2 to 4 p.m. in the Senate Lounge at the State House.

RI DD Services: The Annual Scramble Begins To Avoid Waitlists or Reduced Payments To Providers

By Gina Macris

For the second consecutive year, the director of the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has raised the possibility that adults with developmental disabilities might face waiting periods for services if the department cannot resolve a projected $9,.4 million deficit by next June.

Most of that estimated $9.4 million shortfall - $7.6 million – occurs in the Division of Developmental Disabilities (DDD).

Waiting lists and reductions in reimbursement rates to private providers are among alternatives proposed by BHDDH director Rebecca Boss in a corrective action plan for dealing with the shortage in state revenue. Private organizations do most of the front-line work with adults facing intellectual and developmental challenges.

Any state agency running over budget must submit a corrective action plan to the state budget office. Seven other agencies are in the same position as BHDDH.

While complying with the requirement for a deficit-reduction plan, BHDDH also has prepared a budget request which seeks a additional $12.7 million in state revenue for the private system of developmental disability services through June 30, 2020. That total includes:

• $7.6 million in supplemental funding to close the gap in payments to private service providers during the current fiscal year.

• $5.1 million for the fiscal year that begins July 1, 2019.

No Wage Hikes In BHDDH Budget Request

The combined $12.7 million request does not reflect any wage increases for direct care workers in private agencies, a BHDDH spokeswoman said. According to a trade association, workers receive an average of $11.36 an hour - less than the $12 hourly pay offered at the Target store on the other side of the Massachusetts state line in Seekonk during Thanksgiving week.

The consultant involved in developing the existing fee-for-service rate structure seven years ago said recently that it’s “past time” for an overhaul of the reimbursements. Both House and Senate leaders say they support the idea of wage hikes for front-line workers.

Governor Gina Raimondo has not responded to email requests from Developmental Disability News for comment on recent public remarks of the consultant, Mark Podrazik, President of Burns & Associates.

Raimondo is due to present her budget proposal to the General Assembly the third week in January. She must consider many factors, including a projected $41.9 million deficit in overall state spending and recent revenue estimates running about $5.4 million below the previous projections, made last May.

Federal Officials Watching Budget Process

A lot can happen between now, the start of the budget planning cycle, and the end of June, when General Assembly adopts final figures to close out one fiscal year and launch a new budget on July 1.

And when it comes to spending on developmental disabilities, the conversation has broadened in the last several years to include the ever-increasing demands for reform imposed by a 2014 federal civil rights consent decree between the state and the U.S. Department of Justice.

Before the budget was finalized in the last session of the General Assembly, the independent federal court monitor for the consent decree had sought and obtained written assurances from Raimondo that the state would support mandated systemic changes in services as Rhode Island moves toward community-based, integrated supports of adults with developmental disabilities.

In a letter dated May 14, 2018 to Charles Moseley, the federal court monitor, Raimondo said, “Rhode Island has made significant progress in meeting the requirements of the Consent Decree, and we will continue to prioritize this work.”

What the state’s commitment to developmental disabilities looks like in the current budget is level funding.

Last January, Raimondo proposed a cut of $18.4 million to payments for private service providers, but after better-than-expected revenue estimates in May, pressure from constituents, and Moseley’s request for assurances, Raimondo reversed her position and the General Assembly approved a status quo budget.

Boss Details The Current Problem

Now Boss says that level funding will not be enough to meet expenses, primarily because of an increasing caseload and rising average costs per person. These two trends can be traced back to compliance with the consent decree.

In the last fiscal year, which ended June 30, DDD spent a total of $228.3 million in federal-state Medicaid funds, including $111.1 million in state revenue, for payments to private agencies that provide most of the developmental disability services, Boss wrote to the state Budget Office in October.

The current budget authorizes an expenditure of $229.4 million for those Medicaid payments, with $107.5 from state revenue and the rest from the federal government.

However, in the current budget, DDD is expected to stretch the $229.4 million to cover some additional mandates:

• a total of $1.5 million on contracts and staff to support the consent decree

• $620,000 – about $400,000 more than anticipated – to pay for an increase in wages for home health aides and licensed practical nurses (LPNs) who serve adults with developmental disabilities in their own homes. Boss said the state Medicaid office had set a slightly higher rate for the LPNs than the department had anticipated.

Together, these two factors mean that there is $1 million less in the current budget than there was in the last one for actual services to adults with developmental disabilities, Boss wrote in a report to state Budget Office on spending for the first quarter of the fiscal year.

At the same time, DDD estimates its overall caseload will increase about 1.5 percent during the current budget cycle, based on trends over the last two years. That increase will cost an additional $1.1 million from state revenue,, according to Boss.

In addition, nearly 900 persons are slated for re-evaluation of their needs during the current fiscal year, with interviewers using a revised assessment that has been resulting in generally higher per-person costs since it was adopted in November, 2016, Boss said. The use of the revised assessment, the Supports Intensity Scale – A, is expected to add about $900,000 from state revenue to service costs, Boss wrote in the first-quarter spending report, submitted in October.

Moreover, DDD expects to spend all $6.8 million allocated by the General Assembly for a supported employment program that pays private providers performance bonuses for job placement and retention., The first allocation, in the fiscal year that began July 1, 2016, was underutilized.

Boss said she did not favor a wait list for services as a corrective action plan because it would cause hardship and make DDD unable to continue complying with the 2014 federal consent decree.

Rate reductions to private service providers also would make it impossible to comply with the consent decree and would destabilize the entire system of care, Boss said.

Savings anticipated in State-Run Group Homes

Boss said she does favor another option, consolidation of the state-run group home system known at Rhode Island Community Living and Supports (RICLAS.) DDD is working on closing one state-run group home and relocating existing staff to save on overtime costs, Boss said.

Changes in group home configuration toward smaller units more accessible to the community are being required anyway by the Medicaid Home and Community Based Final Rule.

The consultant for Burns & Associates, Mark Podrazik, recommended in 2011 that the state gradually eliminate RICLAS to more more equitably fund private providers, who were facing severe cuts in payments that resulted in dramatically lower wages and made it difficult for employers to fill job vacancies, problems that persists today.

In testimony Nov. 13 before a special Senate commission, Podrazik said he was told in 2011 that the state did not want to address RICLAS out of concern about a fight from unions.

Over the last several years, however, the size of the RICLAS caseload has declined through attrition. For example, at the start of 2016, there were 210 persons in RICLAS homes, state officials said at the time. Six weeks ago, in mid-October, the RICLAS caseload had shrunk to 126, according to state records.

RI Project Sustainability Study Commission To Meet October 9 For First Session

By Gina Macris

A special Commission of the Rhode Island Senate will hold its first meeting Tuesday, Oct. 9 to begin studying the impact of “Project Sustainability” on services for adults with developmental disabilities, its chairman, Sen. Louis DiPalma, D-Middletown, has announced. The meeting is open to the public.

Project Sustainability is the name of the fee-for-service reimbursement system for Medicaid-funded supports for adults with intellectual challenges that was enacted by the General Assembly in 2011. 

The system features a standardized assessment of each client’s needs which is then translated by an algorithm into one of five levels of individual funding.  It was introduced as a more equitable way of allocating funds than the previous method, in which providers negotiated flat rates for each client in their care. 

But Project Sustainability, which was accompanied by significant budget cuts, has been controversial from the start. The state first calculated a myriad of distinct reimbursement rates based on existing median wages for direct care workers. From there it slashed the rates an average of 17 percent in the budget for the 2011-2012 fiscal year, citing a poor economy.   

Providers were forced to cut wages drastically, leading to an instability in the workforce that persists today. Advocates say the high turnover prevents the state from achieving the goals of a 2014 federal civil rights decree that followed in the wake of Project Sustainability.

The U.S. Department of Justice criticized the state for incentivizing segregated care in day centers or sheltered workshops that can be managed with a minimum of staff. An over-reliance on this type of care violates the integration mandate of the Americans With Disabilities Act, the DOJ found.  

DiPalma, the commission chairman, said the 19-member commission includes two consumers, other advocates, providers and representatives of the executive branch of state government. The commission will accept public comment at every meeting, he said.

The first meeting will cover the history of Project Sustainability and spell out the goals of the commission, according to a statement issued in DiPalma’s behalf. The meeting will begin at 3:30 p.m. Oct. 9 at the State House, but the room has not yet been selected, DiPalma said.

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 

DiPalma: RI DD Services Need More Than $18 Million To Continue Consent Decree Reforms

By Gina Macris

One of the Rhode Island Senate’s chief advocates for adults with developmental disabilities applauded the House and Senate consensus on restoring $18.4 million to reimbursements for private service providers but said that amount is not enough to enable the state to continue transforming its programs to comply with the Americans With Disabilities Act.

Reacting to the latest positive revenue estimates, Sen. Louis DiPalma, D-Middletown, said May 11 that reversing a cut planned by Governor Gina Raimondo for the fiscal year beginning July 1 would be a “phenomenal step forward.” 

But DiPalma, who has closely followed developmental disability issues, said he hopes the General Assembly can find additional funds so that the state can continue to invest in the goals of a 2014 civil rights federal consent decree and also, for a third consecutive year,  raise wages for direct care workers who provide services to adults with developmental disabilities. 

Restoring $18.4 million to private providers, and an additional $3 million to a state-run network of group homes, would bring the developmental disabilities budget to about $272.2 million. That reflects the pace of spending for the current fiscal year.

DiPalma said developmental disabilities will need about $275 million to $280 million in federal and state Medicaid funding during the next fiscal year to continue the decade-long transformation of services from a segregated to an integrated model, as mandated by 2014 consent decree with the U.S. Department of Justice. 

DiPalma’s remarks came the day after the state Revenue Estimating Conference concluded May 10 that revenues for the next 14 months are expected to run a total of nearly $135 million ahead of estimates made in November.  That total includes an additional $75.5 million for the fiscal year ending June 30 and another $59.4 million in Fiscal 2019, which begins July 1.

The $18.4 million gap in reimbursements to private providers for Fiscal 2019 refers tMo both federal and state Medicaid funds, with the federal government providing roughly 52 cents on the dollar.  That means the state would have to put up about $9 million to close the $18.4 million hole.

House Speaker Nicholas A. Mattiello and the President of the Senate, Dominick J. Ruggerio, issued separate statements saying they were pleased that revenues exceeded prior estimates. In recent days, they also have listed developmental disabilities as one of the priorities that must be addressed, although neither viewed the extra cash as a panacea, because of multiple unmet demands on the state budget. 

Mattiello’s statement said, “This offers some more options for us as we consider some very tough choices in our budget deliberations. I am committed to making sure we pass a responsible budget that addresses the critical needs of our citizens and continues to move the state forward.”

In addition, on May 11, he said the House “always” planned to address the $18.4 million gap between current spending for developmental disabilities and the governor’s proposal for the budget cycle beginning July 1.

Ruggerio, the Senate president, said, “As we work together to craft a responsible budget, it is important to consider that a significant portion of this increase is one-time revenue that may not continue in future years, and that there are significant gaps in the current budget proposal that need to be filled. However, the additional revenue does provide some flexibility to address Senate priorities such as funding for developmental disabilities care within the BHDDH budget and funding for DCYF.” Ruggerio referred to the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, and to the Department of Children, Youth and Families.

While adequate funding is the most immediate issue, there are other regulatory matters that concern a federal court monitor and the BHDDH administration. The Senate has signaled it is open to change, both in the short term and the long run.

In a brief telephone interview May 11, Mattiello said he, too, is open to considering changes, although he did not get  into specifics.

“I know the needs are significant,” he said. “I’ve got constituents in the community that have developmentally challenged family members. These folks need help, and I’m very, very available to that.”

“I’m open to study and to doing things better,” Mattiello said. “The department (BHDDH) and the administration certainly can do things better.”

“These are complex issues,” Mattiello said.

The Senate has passed a resolution authorizing a 19-member commission to study the fee-for-service reimbursement structure, with a report due March 1, 2019.

In addition, the Senate Committee on Health and Human Services is to vote May 15 on a bill to change the timing of individual funding authorizations for developmental disability services from quarterly to an annual basis.

An independent federal court monitor in the consent decree case, administrators at BHDDH, and private service providers all have found the quarterly authorizations problematic for a variety of reasons.

Providers have said the quarterly authorization system does not allow them to do any long-range budgeting. Anecdotal accounts of families unable to find services indicate a tendency in recent years for providers to avoid taking on clients with complex and costly needs for fear of financial risk that they may not be to cover.

Meanwhile, the Director of Developmental Disabilities testified at a recent Senate Finance Committee meeting that quarterly authorizations are administratively burdensome. The 3700 individual authorizations in the division’s caseload must be entered manually in the state reimbursement system four times a year, said the director, Kerri Zanchi. 

At the same time, DiPalma, the first vice chairman of the Senate Finance Committee, noticed that in some years there are significant dips in the caseload numbers in April and October – as many as 145 or 150.  This timing coincides with the governor’s budget preparation process in the fall and the legislature’s refinement of the final figures in the spring.  In general, each client represents an average of $60,000 in federal-state Medicaid funding. 

One reason for that variability might be data entry errors, according to Donna Martin, executive director of the Community Provider Network of Rhode Island, a trade association of service providers.

The bill requiring annual authorizations says they are necessary to allow adults with developmental disabilities to plan their services in a “flexible manner consistent with their stated goals and plan of care,” in accordance with the principles of the Centers for Medicare and Medicaid Services and the Home and Community Based Services Final Rule. Among other things, the Final Rule requires service plans to be based on an individual’s needs and preferences.

The bill would not preclude the state from changing reimbursement rates to providers in the middle of a fiscal year, but they and their clients would have to receive 45 days’ notice.

RI Senate Poised To Launch Study of The Way State Reimburses Private Providers of DD Services

By Gina Macris

A proposal for a special commission to study Rhode Island’s fee-for-service reimbursement system for private providers of developmental disability services appears headed for approval on the Rhode Island Senate floor May 1.

The 19-member Senate commission, including representatives of state government, service providers, advocates and the public, would report its findings by March 1, 2019, in time for any recommended legislation to be enacted during next year’s session of the General Assembly.

The  Senate’s Committee on Health and Human Services recommended passage of a resolution creating the commission on a unanimous vote April 24.

The current reimbursement system, called “Project Sustainability,” has been in effect for nearly seven years, which means that there is plenty of data available for analysis, according to Sen. Louis DiPalma, D-Middletown, the principal sponsor of the resolution.

“The goal of 'Project Sustainability' was to bring predictability, efficiency and transparency to the way in which the state pays for the developmentally disabled,” according to the resolution.

But DiPalma said that “we’ve seen some challenges” in Project Sustainability, like a requirement that providers document daytime services in 15-minute increments. That feature has been assailed by service agencies as overly burdensome and costly.

“We have to take a look back and see what worked, what hasn’t worked, and what changes are needed going forward,” DiPalma said.

DiPalma, the Senate’s most vocal advocate for adults with developmental disabilities, is expected to be among three legislators on the 19-member commission to be appointed by the Senate President. 

He said its recommendations would not sit on the shelf. “I don’t do anything for the sake of doing it. I’m about doing the analysis and getting the job done,”  said DiPalma.

In addition, “the members of the commission won’t let it happen,” he said. There will be “joint accountability” for what happens, inside and outside the General Assembly, DiPalma said. 

The membership of the commission would include representation from the Rhode Island Developmental Disabilities Council and a parent group, Rhode Island Families Organized For Reform Change And Empowerment (RI FORCE), as well as the Rhode Island Disability Law Center. Human services officials from the executive branch of government would include the director of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) and several other representatives of BHDDH and the Executive Office of Health and Human Services.  

The commission would convene at a time of renewed parent advocacy and heightened scrutiny of developmental disability funding by the U.S. District Court in the wake of Governor Gina Raimondo's plans to cut $18.4 million from reimbursements to private providers beginning July 1.

In a 2014 consent decree with the U.S. Department of Justice, the state pledged to move from segregated sheltered workshops and non-work day services to an integrated, community-based system to comply with the Americans With Disabilities Act. 

In the most recent court hearing April 10, providers warned Judge John J. McConnell, Jr. that they would not be able to continue consent decree compliance efforts if the state enacts Raimondo's proposed budget cuts. d

McConnell is expected to consider taking action on the basis of recommendations from an independent monitor in the case sometime before the General Assembly finalizes the next budget. The monitor, Charles Moseley, was to seek consensus from state officials and service providers before submitting his report to McConnell.

If no agreement can be reached, McConnell has said, he is prepared to hear evidence and arguments before deciding on a course of action. 

RI Proposes E-Records For DD System That Raise Questions About Consent Decree Compliance

By Gina Macris

For the last five-and-a-half months, Rhode Island has been considering eight proposals for an electronic case management system to keep track of services for adults with developmental disabilities.

In part, the electronic system would satisfy demands for up-to-date information so that federal officials could better gauge the state’s compliance with a 2014 consent decree requiring it to shift to community-based daytime services to comply with provisions of the Americans With Disabilities Act.

But the solicitation also indicates that the design of the electronic case management system could conflict with implementation of other requirements of the consent decree, which call for individualization of services and a more flexible approach to delivering them.

Among the vendors submitting proposals is Deloitte Consulting, the company involved in the chaotic rollout of a statewide public assistance benefits computer system known as the Unified Health Infrastructure Project (UHIP), which went live last September. 

At last count, more than 10,000 individuals, which include those with disabilities, are experiencing difficulties with food stamps and other public assistance and medical benefits, according to state officials. And UHIP has contributed to confusion about caseload estimates, used by policy makers to calculate demands on the budget that begins July 1.

Deloitte and the state are still trying to fix UHIP and are negotiating a financial settlement for the $364 million project, although the company recently gave the state a $27 million credit, primarily to cover the cost of re-hiring workers previously let go to help de-bug the system.

The state is appealing a federal fine of $805,197 over the implementation of the project, and the U.S. Attorney’s Office is investigating separate allegations that the federal-state Medicaid program was billed for services that were not provided in connection with the UHIP rollout.

The language of the 116-page request for proposals concerning  the developmental disability program, issued last fall,  indicates that the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) would conduct business as usual in its funding and delivery of services in two key areas:

• The use of a mathematical formula to translate the results of a standardized needs assessment called the Supports Intensity Scale (SIS) into one of five levels of funding, which in turn would define the scope of services, or “service packages.”
• The continuation of a fee-for-service billing system for private providers, which pays out only when a service is provided face-to-face, in 15-minute increments during the day, and in 24-hour segments for residential programs, with rates subject to change on a quarterly basis.

The solicitation remains active even as the Division of Developmental Disabilities has signaled it is gearing up for an overhaul of existing regulations to comply with the consent decree. And in a report filed with the U.S. District Court in April, the state agreed to explore new approaches to funding to follow-up on statistics that showed at least one third of private agencies don’t have the ability to expand the kinds of services the consent decree demands.

The independent federal court monitor who is overseeing implementation of the consent decree, Charles Moseley, has said that funding must respond to the individual’s “goals and preferences” as expressed in an individual support plan.

In other words, the money should follow the person, rather than the other way around, as is currently the case.

During the month of May, the Division of Developmental Disabilities and the Sherlock Center on Disabilities at Rhode Island College have invited the public to attend presentations on the central idea behind personalizing services, or "person-centered" thinking; the notion that individuals with disabilities should have more control over their lives.

The regulatory overhaul will be based on that personalized approach, with families, consumers, and providers participating in the rule-writing, Kerri Zanchi, the division director, said at a recent public forum. 

Asked after the meeting how how changes in practice brought about by the new regulations would be funded, Zanchi said, “When we figure out what it (the service system) would look like, then we need to figure out the funding for it.”

The consent decree, meanwhile, also criticizes the fee-for-service reimbursement model for private providers as insufficiently flexible to accomplish the its goals, which focus on individualized community-based supports for jobs and leisure activities.

In response, BHDDH has established a pilot program for supported employment, which provides bonuses for staff training, job placement, and job retention. It has resulted in 40 new jobs since January, according to a BHDDH official.

But in light of the recent survey indicating gaps in providers’ ability to take on new clients, BHDDH has agreed to take a deeper look at funding.

Through a BHDDH spokeswoman, state officials declined to comment on the solicitation for proposals while bids are under evaluation. The eight bids were opened last Nov. 29, according to the website of the state purchasing office.

The request for proposals appears to respond, at least in part, to complaints about data collection expressed by both Moseley, the consent decree monitor, and the U.S. Department of Justice.

Moseley has said the information was so inadequate that it was impossible to tell whether the state was meeting employment targets and other requirements.  Just a year ago, state officials were struggling to come up with an accurate count of the total number of adults with developmental disabilities who were protected by the agreement.

Since then, the state has adopted a work-around to the existing system that can respond to specific queries from the monitor or the U.S. Department of Justice, but not on a real-time basis. The patchwork approach enlists data collected quarterly by the Sherlock Center on Disabilities at Rhode Island College. 

The budget for the electronic case management system has not been made public. The request for proposals (RFP) anticipated an initial three-year contract period beginning March 1.

Asked about the apparent delay, the BHDDH spokeswoman, Jenna Mackevich, said in an email that “it’s important that the agency take the time necessary to thoroughly evaluate proposals and conduct its due diligence during the purchasing process. “

During the evaluation period, the state also has allowed the expiration of a 120-day ban on vendors changing their proposals, which is spelled out in the RFP. The RFP said the state would consider not only price but various aspects of functionality in the proposals as part of its evaluation.  Vendors would be required to demonstrate their products.

To keep costs down, the state is seeking “off-the-shelf” software with customization not to exceed 15 percent. 

According to the RFP, the new electronic case management system would computerize all record-keeping for the developmental disability service system, allowing access by families, providers, and BHDDH staff for multiple purposes.

Besides Deloitte, the vendors are Consilience Software, of Texas;  Eccovia Solutions, Inc., of Utah; FELCOM, Inc., of Maryland;  FOOTHOLD, Inc. of New York; Mediware, of Virginia; Netsmart Technologies, Inc., of Kansas; and Therap Services, Inc., of Connecticut.