RI Governor Seeks Tens of Millions More For DD To Expand Community Services

By Gina Macris

This article has been updated

Rhode Island Governor Dan McKee has more than doubled the hike he is seeking from the General Assembly for developmental disabilities services in the next fiscal year. The overall funding increase is intended to expand opportunities for people to participate in community activities and increase the direct care workforce by offering higher pay.

A consultant for the state alluded to the funding hike during an April 27 hearing before Chief Judge John J. McConnell Jr. of the U.S. District Court, who heard a progress report on the state’s implementation of a 2014 consent decree intended to integrate adults with developmental disabilities in their communities. The amount of the increase was not mentioned in court but appears in updated documents on the website of the state budget office.

McKee originally earmarked $30.8 million to raise the minimum wage for direct care workers from $18 to $20 an hour to comply with a court order. The raises were to be part of a $385 million spending limit for private developmental disabilities services for the fiscal year beginning July 1.

On April 17, the state budget office raised the set-aside for raises to $75 million, including about $33.9 million in state revenue and about $25.8 million from federal funds in the federal-state Medicaid program. The budget amendmentes the new total for the private developmental disabilities system to $429.5 million.

The dramatic hike in funding anticipates a significant policy change that will allow private service providers to bill at higher rates on the assumption that all activities will involve supports in the community and will require more intensive staffing than center-based care.

Maintaining a regular gym schedule, attending an art or dance class, meeting a someone for coffee or going shopping are all activities most people take for granted, but those with developmental disabilities often need help with transportation and other supports to make these things happen.

The shift to 100 percent community-based services would eliminate the practice of budgeting for 40 percent of each client’s time in a day care center, which requires less intensive staffing but doesn’t offer people individualized or purposeful choices. A group cooking class, for example, may not succeed in teaching skills enabling participants to cook more independently at home.

The so-called “60-40” split between community and center-based care has been criticized by an independent court monitor overseeing the consent decree, who said the state must do everything it can to promote integration in the community to fully comply with the agreement.

The state’s consultant in a court-ordered rate review of Rhode Island’s developmental disabilities system explained the change in approach to daytime services during the April 27 hearing before Judge McConnell.

Stephen Pawlowski, managing director of the Burns and Associates Division of Health Management Associates, (HMA-Burns), said those who want center-based care may still choose it.

The recommendations of the HMA-Burns rate review, as well as the money to go with them, will need General Assembly approval before they go into effect July 1.

Feds Want Results

During the hearing, the independent monitor, A. Anthony Antosh, and a Justice Department lawyer, Amy Romero, applauded the administrative efforts of the state in recent months.

At the same time, they warned that full compliance with the consent decree will depend on results – more adults with developmental disabilities holding jobs and more community connections. And the deadline for full compliance is only 14 months away, June 30, 2024.

Romero, an Assistant U.S. Attorney in Rhode Island, previously raised concerns about the state meeting the 2024 deadline.

In the latest hearing, she commended the state for its efforts in the rate review process, but she also said the state must bring a sense of urgency to the push for more employment – one of the chief goals of the consent decree.

In frequent meetings with adults with developmental disabilities, she said, “meeting somebody with a job is the exception.”

“There are a lot of people out there who want to work and are not working,” she said. “It’s a missed opportunity with the employers themselves.”

The rate review would make employment-related supports available to everyone as an add-on to individual basic budgets.

Under the current rules, employment-related supports come at the expense of something else in the basic budgets. As a result, the number of overall service hours are reduced, because services like job development and job coaching cost more than other categories of support.

Since the consent decree was signed in 2014, the General Assembly has periodically earmarked separate funding for pilot employment programs in the developmental disabilities budget that don’t require individuals to give up service hours. The most recent one ended a year ago, shortly after the chief of employment services in the Division of Developmental Disabilities (DDD) departed.

A new employment chief will start work May 8, according to a spokesman for the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Some adults with developmental disabilities have been able get around the restrictions of the basic budgets if they have a service provider who gets funding for job supports from the Department of Labor and Training, or if they can get help from the Office of Rehabilitation Services.

And some high school students with developmental disabilities have gone from internships to real jobs as they move on to adult developmental disability services, although they have been the exceptions.

A spokesman for the Rhode Island Department of Education (RIDE) told the monitor, Antosh, that the agency is helping school districts plan revisions to transition services to put a greater emphasis on job-seeking.

Assessment Issues Remain

During the hearing, Antosh brought up another piece of unfinished business that poses a challenge for the state; figuring out how to apply the new rate structure so that everyone approved for services gets the supports they need.

The shift to community-based day services, by itself, will not achieve that goal, because of the way the assessment of individual needs is currently linked to funding.

Antosh said he continues to hear from families who are concerned about the accuracy of the assessment in its existing form.

The algorithm – or mathematical formula – used to turn the scores from the assessment into individual funding “needs to change,” he said. The assessment itself was not designed as a funding tool, but the developer, the American Association of Intellectual and Developmental Disabilities (AAIDD), still allows many states to use it that way.

After Rhode Island began its rate review in early 2022, AAIDD announced it would spend the next year overhauling the assessment, called the Supports Intensity Scale (SIS).

The second edition of the SIS was not released until mid-March of this year, and the state won’t begin to use the revised assessment until June. After that, a sample of 600 assessments will be needed before officials can do the math in a systematic way to assign budgets.

With each assessment taking two to three hours per person, the process of collecting 600 sets of scores is expected to take about six months.

In addition, the way the second edition of the SIS is scored is substantially different than the first edition, said Pawlowski of HMA-Burns.

Heather Mincey, Assistant Director of DDD, said that going forward, the SIS will not be the only measure used to determine support needs.

The second edition of the SIS will come with supplemental questions to capture exceptional needs like behavioral and medical issues.

But Mincey said there will be an additional set of supplemental questions, as well as an interview with individuals and their families to determine if there is any support need the assessment missed.

Independent facilitators will work with the assessment results to help individuals and families plan a program of supports, and then the funding will be assigned.

Currently, the funding is assigned directly from the SIS scores, and services are planned to fit the budgets.

Antosh has said the existing approach does not allow for the individualization necessary to comply with the consent decree.

The individual facilitators, proposed by Antosh, would be trained in a “person-centered” approach that incorporates short-term and long-term goals into a purposeful program of services built around the preferences and needs of the individual involved.

The person-cantered approach is considered a “best practice” in developmental disabilities that preserves people’s right to lead regular lives in their communities in compliance with the Olmstead decision of the U.S. Supreme Court, which gives the consent decree its legal authority. The Olmstead decision reinforced the Integration Mandate of the Americans With Disabilities Act.

The facilitators for person-centered planning have not yet been hired.

Mincey said the state is working with the Sherlock Center on Disabilities at Rhode Island College to develop a job description for the facilitators. They would not be state employees.

Governor’s Budget Amendments

In separate budget amendments on April 17, the Governor asked the General Assembly for additional funding to pay for the technology needed for them to do their jobs.

It calls for an information technology contract totaling $250,00 for so-called “conflict-free case management” to be implemented by the facilitators. All but $25,000 would be federal funds.

Antosh also asked Mincey what the state is doing to improve communication with families, who will have to absorb a considerable breadth of new information to take advantage of new opportunities in developmental disability services.

She highlighted the eight new positions being added to the staff of the Division of Developmental Disabilities who will focus on communication and training. All but one position has been filled, according to a BHDDH spokesman, Two have begun work, he added later.

Those new positions will cost $203,275 for the first full year, taking into account federal Medicaid reimbursements and savings from staff turnover in other positions, according to the governor’s original budget proposal.

The April 27 hearing serviced as an interim progress report as the state bears down on a court-ordered July 1 deadline to implement rate hikes and other administrative changes.

Antosh said he plans to write an evaluation of the state’s progress about mid-July. Judge McConnell said he will hold the next consent decree hearing about August 1. The exact date, later published by the court, is Tuesday, August 1 at 10 a.m, with public access available remotely.

The current developmental disabilities budget is $383.4 million, including nearly $352.9 million for the privately-run system and nearly $30.6 million for the state’-run group home network, which is not involved in the consent decree.

The governor’s revised budget for the current fiscal year would pare overall developmental disabilities spending to $377.3 million by June 30, including about $348.5 million for the private system and about $28.3 million for the state group homes, called Rhode Island Community Living and Supports (RICLAS.)

For Fiscal 2024, the total federal-state Medicaid funding would be $461.8 million for the private and state-run systems, according to the amended budget proposal. That total includes about $429.5 million for the private system and about $32.4 million for the state-run system.

Related content:

McKee’s original budget proposal is covered in an article here.

Pawlowski presented a PowerPoint on updated “rate and payments options” to the court that has been released by the state. Read it here.

For RI Adults With DD, Work Is A Choice, Not A Mandate, Says Federal Civil Rights Consent Decree

Kiernan O’Donnell, foreground, addresses DDD public forum in East Providence, RI, while Charles Moseley, independent federal court monitor in Rhode Island’s Olmstead consent decree case, participates via video link. All photos by Anne Peters.

By Gina Macris

It’s no secret that Rhode Island’s Olmstead consent decree has put the focus on employment opportunities – and challenges –in the system of state-funded services for adults with developmental disabilities.

Four and a half years after the consent decree took effect, the state Division of Developmental Disabilities (DDD) still finds it necessary to punch holes in the myths about what the state’s Employment First policy means and doesn’t mean. Employment First was created to respond to the consent decree’s push toward integration of those isolated in sheltered workshops and day programs, as required by the Olmstead decision of the U.S. Supreme Court, which reaffirmed a key part of the Americans With Disabilities Act.

“We’ve had a lot of people worry that if they don’t work, they won’t get benefits,” said Anne LeClerc, Associate Director of Program Performance.

That’s simply not true, LeClerc told about 80 people crammed into a room at the East Providence Senior Center and an unknown number of others who watched the presentation live on Facebook from the comfort of their homes.

Tina Spears, L, hands Microphone to Anne LeClerc

LeClerc said there’s there’s no requirement that adults with developmental disabilities who receive state-funded services must work, but if they want to be employed, the state will provide job-related supports.

“Not everyone has to work, or is ready for work now,” she said. Individuals may have health or family issues that prevent them from working. It may take “a long time” for people to prepare for work in various ways, LeClerc said.

The federal court monitor in the consent decree case, Charles Moseley, chimed in via video link:

The consent decree requires those who choose not to work to make an “informed choice,” he said. What makes a decision an informed choice are trial work experiences, with the appropriate supports, and a vocational assessment, Moseley said.

And back in East Providence, Kiernan O’Donnell added a third element of informed choice: individualized benefits counseling from a specially-trained expert in how a paycheck might affect Social Security or other financial support received by a person with disabilities.

O’Donnell is co-president of the Rhode Island chapter of the Association of People Supporting Employment First (RIAPSE.)

He said Social Security benefits are so complicated that only specially trained counselors are qualified to recommend work options to individuals receiving public assistance. (The Paul Sherlock Center on Disabilities at Rhode Island College offers free Work Incentives Public Information Sessions. For more information, click here.

The “Variance”

LeClerc, meanwhile, said individuals 62 years old and older who don’t want to work may simply choose to retire.

People younger than 62 who opt out of the job market must submit a variance to the state’s Employment First policy, LeClerc explained, “A variance is just documentation of a decision not to work,” she said.

The variance form asks why “work is not right for you,” LeClerc said. Someone prevented from working by poor health need simply note that as a reason, but no medical documentation is necessary, she said.

Ken Renaud, a leader in the family advocacy group RI FORCE, asked whether the variance is something that must be revisited “every single year.”

“The variance itself is a one-time thing,” LeClerc replied. During individual service plan meetings held annually, those individuals who have previously chosen variances will simply be asked whether they’re still happy with their decisions not to work. If not, they may reconsider.

One member of the audience told LeClerc about the experiences of individuals over retirement age whose individual service plans were rejected because they didn’t have a career development component. Individual service plans are important documents used by DDD to document the services that Medicaid will pay for.

LeClerc said the service plans shouldn’t have been turned back; the career development component could have been simply marked “retired.”

“We’ll work on making that clearer,” she said.

If the problem occurs again, LeClerc told the woman, consumers and their advocates should get in touch with her. ( LeClerc can be reached at 401-462-0192 or Anne.LeClerc@bhddh.ri.gov.

Fact vs Myth

O’Donnell, the RIAPSE leader, sought to give the audience a toolkit for myth-busting that went far beyond the correction of one falsehood. “Knowledge is power,” he said. “Lack of knowledge can prohibit people from pursuing their dreams. Myths sometimes rule the dreams you pursue or don’t pursue.”

O’Donnell’s general advice: get the information in writing. APSE, the national organization of supported employment advocates and professionals, offers its own fact sheet busting the “Top Ten Myths” of Social Security Benefits.

“Let’s not get hung up on barriers when we are able to combat them with knowledge,” he said.

Worries About Funding

Mary Beth Cournoyer, who serves on a community advisory committee, the Employment First Task Force, said that many people looking for jobs need “customized employment” – self-employment or work individually designed to match the skills of a particular employee with the needs of an employer.

For example, someone with a disability can be trained for a part-time job running the paper shredder at a large law firm, freeing support staff for other duties.

The idea of customized employment is “new to families,” said Cournoyer, who has a son with a developmental disability. Parents feel that they may need 30 hours of job coaching, but only have enough funding for 10 hours, she said.

“I don’t want to see jobs and capacity missed because we don’t have enough money for a coach,” she said.

Moseley said Cournoyer’s concerns about funding for services “is a great question for Kerri” – a reference to Kerri Zanchi, Director of Developmental Disabilities.

Funding “is a challenge. It might change,” he said.

Moseley segued to initiatives that might improve the outlook for adults with developmental disabilities and their families, including a commission, chaired by State Rep. Louis DiPalma, D-Middletown, to study the effectiveness of the current funding system. The commission is expected to convene in October.

In August, Moseley said, he talked to private service providers about changes they are making. “There are a lot of exciting things moving forward, but also barriers,” he said.

Zanchi, meanwhile, ticked off initiatives of DDD, including the preparation of an application to the Centers for Medicare and Medicaid Services for approval of a pilot Alternative Payment Model that would give providers a flat rate for a defined bundle of services rather than the current fee-for-service reimbursements that providers say restrict their flexibility to meet clients’ needs.

Zanchi and LeClerc both emphasized improvements in data collection that will help them better identify and respond to the needs of those served by the developmental disability service system.

“Thanks for being here,” LeClerc said with a smile, addressing the audience, “and for bringing these things up constantly.”

Met by a round of laughter, LeClerc added, “I mean that sincerely. “

Lenore Costa

One mother, Lenore Costa, said her son, who has Fragile X syndrome, has not been able to get any developmental disability services in the year the family has lived in Rhode Island. Costa said she moved from Massachusetts, where her son received day, evening and weekend services, to take advantage of a professional opportunity as a nursing executive.

It’s a big job, she said, but her son’s needs are also a full-time job.

Zanchi connected Costa with a DDD social work supervisor, who sat down with her after the meeting.

Deborah Masland, part of a consumer panel that offered commentary on the meeting, said “people’s jobs should not be threatened because they can’t find services for a loved one.”

Masland works at the Rhode Island Parent Information Network with families facing special health care needs and has a 19- year-old daughter, Olivia, who has loved her 12 years of schooling and is now in her first transition year.

Olivia has a work trial in food prep at a Chili’s restaurant 45 minutes a week, and while she’s excited about her t-shirt, her hat, and her special work shoes, her mother said she’s not sure that the experience is preparing her for a job.

Quality of Leisure Activities Questioned

Anne Peters said her 27-year-old daughter has been looking for a job for three years, and any work she finds will be part time. With that in mind, she asked whether the emphasis on jobs is jeopardizing the quality of non-work day services.

Heather Mincey, the assistant director of developmental disability services, said that was a hard question to answer on an individual basis.

Job-related supports cost more than non-work services, but they both come out of a fixed funding authorization for a particular individual. Mincey suggested that over time, the funding for work and non-work activities will even out if job supports eventually can be faded away.

With the closing of some day programs, Peters said, there are a “lot of movies and malls” for “non-work services,” suggesting that more purposeful activities would better meet quality standards.

Mincey acknowledged that it is difficult for providers to shift from center-based care to integrated services. She noted that DDD recently hired two quality assurance officials to work with LeClerc for a year on program improvements.

Peters added that addressing high turnover and low wages among support staff is a critical part of any solution to the problems the system faces.

Christopher Semonelli, vice-president of RI FORCE (Families Organized For Reform Change and Empowerment) said members of the General Assembly need to hear the breadth and depth of concerns expressed at quarterly public forums.

He said RI FORCE will sponsor a candidates’ forum Oct. 3 from 4 to 7 p.m. at the Newport campus of the Community College of Rhode Island.

Advocacy is “huge,” he said, but “you can only eat an elephant one bite at a time.”

(RI FORCE streamed the public forum live on Facebook and the video remains on its Facebook page.)

Madden to Leave RI Consent Decree Post; Lawyer Dianne Curran Named New Coordinator

By Gina Macris

Mary Madden, the coordinator of Rhode Island’s efforts to comply with a federal consent decree mandating a transformation of developmental disability services, will step down from that post at the end of March.

Mary Madden                          File Photo

In her place will be Dianne Curran, a longtime disability rights lawyer who has worked both in Rhode Island and Massachusetts, most recently as a consultant to the Massachusetts Department of Elementary and Secondary Education.

The announcement was part of a public community forum at the North Providence Senior Center Feb. 23 that also catalogued a series of system-wide changes undertaken in recent months, even though developmental disability services still fall short of the funding parents said is necessary to individualize supports for their sons and daughters.

And the audience was reminded that family stories are the ones that make the biggest impact with members of the General Assembly, who in the next several months will consider increases in the current budget and one for the fiscal year which begins July 1.

Curran, al awyer for both Rhode Island Legal Services and the RI Protection and Advocacy System (now the Disability Law Center) during the 1980s, also has served Massachusetts state government in various legal positions in education, human services and developmental disabilities departments. Her lengthy experience in that state includes a brief stint coordinating activities in response to consent decrees affecting adults with developmental disabilities and mental illness.

Madden, a veteran developmental disabilities professional in the private sector, became consent decree coordinator for Rhode Island in January, 2016, at a time when the state was just beginning to craft a response to the 2014 federal consent decree.

 On Thursday, Madden said that continuing as consent decree coordinator “was not in the long-term plan.”  Madden said she would not have returned to graduate studies in disabilitiesand public policy at Rhode Island College if she were not satisfied that that the state had gained momentum in responding to the consent decree. 

Most recently, Rhode Island recruited Kerri Zanchi as director of developmental disabilities after a six-month vacancy in that post.

Zanchi is a career administrator in developmental disability services, who, like Curran, has extensive experience in Massachusetts. She told the audience at Thursday’s forum that she was drawn to the Rhode Island job because of the state’s commitment to community-based services and the opportunity to make lasting change as the state shifts away from isolated day programs and sheltered workshops to comply with the consent decree. The decree requires the state to comply with the 1999 Olmstead decision of the U.S. Supreme Court, which ruled that services for all persons with disabilities must be desegregated in accordance with the Americans With Disabilities Act.

Thursday’s session, attended by about 30 people, was notable for its low-key, conversational tone, a sharp departure from the angry complaints that dominated such meetings during 2016.

In the last six months, developmental disability officials reported, they have made several improvements, including the following:

• speeded up the application process for adult services for individuals with developmental disabilities and adopted a policy to determine eligibility for adult services by the time special education students turn 17

• named a full time transition coordinator,  Carolee Leach, to work with high schools and the families of their special education students in preparing for adult life

• implemented a modest raise of about 36 cents an hour for direct care workers, as directed by the General Assembly

• introduced revisions to an assessment process used in determining individual funding allocations

• rolled out a supported employment incentive program for private service providers whohave placed 20 adults with developmental disabilities in jobs in the community since January

An independent court monitor in the consent decree case, however, has said in a recent report that the state must do much more to comply with the consent decree. (Click here for article on monitor’s latest report.)

At the meeting,  Zanchi, Madden and several other officials, including Jennifer Wood, General Counsel to the Office of Health and Human Services, heard from parents who said their adult children are lacking individualized community-based services.

Pat Abbate

Pat Abbate, who has a 46 year-old son with significant challenges, said the agency which serves him has good intentions but does not have enough financial resources to individualize services in the community

Tammy Russo, who has a 21 year-old son with disabilities, said he gets “no community services except for me.”

Greg Mroczek said 70 percent of his daughter’s program is in a day center isolated from the community.

Earlier in February, the same developmental disability officials heard a similar theme – a lack of adequate funding - from a mother who said she was forced into managing her daughter’s services because no agency would take her. Mary Genco said she asked 19 agencies, and each one said it had no nurse who wanted to deal with her daughter’s medical needs.

Genco, who is home with her daughter nearly all the time, said she represents growing minority of aging parents who are being “worn out” by adult children with extensive medical or behavioral support needs.

On Thursday, Pat Abbate put numbers on the funding gap. She said – and a check of the state’s Office of Management and Budget (OMB) website confirms – that funding for developmental disabilities lags behind the high of $260 million enacted by the General Assembly for the fiscal year between July 1, 2007 and June 30, 2008. At this time last year, the enacted budget was just shy of $231 million, according to OMB documents.

In response to a federal court order which said the state did not allocate enough money to implement the consent decree, Governor Gina Raimondo later pushed for increases, approved by the General Assembly, which boosted the bottom line to $246.2 million in the current fiscal year.

In her most recent budget proposal in January, Raimondo seeks an additional $4.4 million to finish the current fiscal year, for a total of $250.6 million. For the next fiscal year, beginning July 1, Raimondo has asked the General Assembly for $256.7 million.

Heather Mincey, a developmental disabilities administrator, said, “With our budget we try to advocate for as much money as we can.”

Brian Gosselin, chief strategic officer at OHHS, explained that the various departments of state government are active in their own advocacy, working with OMB and the Governor’s office, from July through December. But the state agencies don’t control the allocations, he said.

With the governor’s budget proposal now in the hands of the General Assembly, Gosselin and Mincey agreed, it’s vital that the community speak up.

“It’s important for families and advocates to be out there to speak to their representatives and let them know what your needs are,” Mincey said. 

A member of the audience, who said he works for a developmental disability service agency in Massachusetts, drove home Mincey's and Gosselin’s message.

The voice of families and advocates for developmental disability services is much stronger in Massachusetts than it is in Rhode Island, he said.

“When a family member calls up and gives them (legislators) a story, it makes such an impact,” he said. “I don’t think enough people get that point” in Rhode Island.

Governor's Budget Would Add Total of $10 million For Developmental Disabilities Through June, 2018

By Gina Macris

A new $6.8-million incentive program, intended to encourage service providers to help Rhode Islanders with developmental disabilities get and keep jobs, will become a permanent fixture of the annual budget, according to Jennifer Wood, Deputy Secretary of Health and Human Services.

That is one of several areas of Governor Gina Raimondo’s budget proposal that indicates the state is moving to increase services for individuals with developmental disabilities in keeping with a 2014 consent decree, which requires Rhode Island to expand their access to employment and other community activity over a ten-year period.  

Wood and other key officials, who are involved in reinventing the state’s developmental disability service system, elaborated on Raimondo’s proposed budget and the way it reflects evolving trends and programs during an hour-long interview with Developmental Disability News on Jan. 24. 

Between now and the end of the next fiscal year, which concludes June 30, 2018, Raimondo proposes to increase spending for developmental disability services by about $10 million, excluding restricted funds and capital expenses.

Of that total, $6 million in federal and state Medicaid funds would be used for five-percent increases to the average wages of direct support workers, and much of the rest would reflect more expensive levels of services needed by individuals with developmental disabilities than have been recognized in the past.

Overall, Raimondo asked the General Assembly to increase the current allocation for developmental disability services by nearly $4.4 million in this fiscal year, which ends in June, from about $246.2 million to $250.6 million.

Excluding restricted and capital accounts, the added amount available for services before June 30 would be nearly $3.8 million, according to a budget breakdown provided by EOHHS. In the budget cycle which ends in June, 2018, the Governor would add a total of about about $6.1 million, for $256.7 million in all spending on developmental disability services. Excluding the restricted and capital funds, the increase would be about $6.6 million.  

All Funds vs Operating Budget

TABLE COURTESY OF EOHHS

    GR=state funds     FF= federal funds

The primary reasons that developmental disability services are expected to be more costly include:

•  The need for a better-paid, more stable workforce, funded with a 5 percent increases in direct care wages, or a total of $6 million 

• · Additional staff time spent on job hunting and job support for their clients, reflected in the new $6.8 million individualized supported employment program that is already part of approved spending

• A new version of the process for assessing individual needs appears to indicate that more supports are required than have been recognized in the past.

Supported Employment Program Has Begun Operations

Until now, all individuals with developmental disabilities who sought help in finding jobs in the community had to give up other kinds of services, with the dollar value of their personal funding authorizations remaining the same. But those enrolled in the new “person-centered” supported employment program, now accepting applicants, will get job support in addition to their other services, according to an EOHHS spokeswoman. The program is expected to involve about 200 clients.

The supported employment program was funded by the General Assembly with a $6.8 million allocation for the current fiscal year. But that sum has been untouched while the state has figured out how the program will work.

The program is poised to make its first disbursements to service providers, including incentive payments for the placement of two individuals in jobs in January. said Tracey Cunningham, Chief Employment Specialist in the Division of Disabilities at the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

The original $6.8 million allocation is expected to fund the incentive program into the second half of the fiscal year ending in June, 2018, according to an EOHHS spokeswoman.

The program staff will evaluate the results of the first operational year to determine how much money it will need to continue, said Brian Gosselin, the Chief Strategy Officer at EOHHS. Wood promised assured continuous funding for the program.

“What we hope to learn in the first 12 months of this brand new program is what impact $6.8 million will have,” Gosselin said. It provides one-time incentive payments when staff complete a specific training program and clients are placed in jobs. The program also pays bonuses for employment retention, in two installments, after 90 and 180 days.  

Gosselin said he and his colleagues will determine whether the $6.8 million allocation was enough and will identify the successful features of the program that can be used in the second year.

He and Wood were asked why the 22 providers participating in the program must continue to use a fee-for-service reimbursement model which requires them to bill for daytime services in 15-minute increments.

Gosselin said that is the funding model that the federal Centers for Medicare and Medicaid services has approved for daytime developmental disability services in Rhode Island.

“In order to make any adjustments to that methodology we would have to go through a very long approval process with the federal government,” he said.

But he emphasized that the new performance-based aspect of the incentive program is “what we hope to learn from.”

A discussion of the fee-for-service model and whether it works for Rhode Island is part of a larger conversation – redesigning and renewing the state’s Medicaid waiver, which is expected to occur in 2018, Gosselin said.

Wood emphasized that she didn’t want to conflate two things. “One is Medicaid billing” and the other is “programmatic contracting,” she said.

“What we set forth to do was to create the first instance in Rhode Island of performance-based contracting for outcome-based services provided to individuals with developmental disabilities. We are super-excited about that,” she said. “That’s a whole new direction for this world.”

Wood also elaborated on the design and roll-out of supported employment in the context of a U.S. District Court order reinforcing the 2014 consent decree, which had set an Aug. 1 deadline for implementation of the performance-based supported employment program.

“Implementation is an ongoing activity,” Wood said. “We met the requirements of the Court order by filing with the monitor and the Court and the DOJ (U.S. Department of Justice) the programmatic requirements” for the supported employment services program last summer, Wood said. The “person-centered” program is designed to put the needs and preferences of the client at the center of the job-hunting and support process.

Since the summer, state officials have met with providers, drawn up contracts and finalized them, she said. The next phase of implementation is enrolling clients, Wood said.

“We are actually quite proud of the fact that we can bring this program up in what in government circles is lightning speed,” she said, “and to do it in a really reliable, viable, and responsible way.”  .

“I know it may not appear that way to the public,” Wood said.  She apparently alluded to public criticism of the program, which was not completely fleshed out when it was first presented to providers in November and was not widely understood by families who direct individualized services for a loved one.

Wage Increase Intended to Help Stabilize Workforce

Governor Raimondo’s proposed $6 million for wage increases for direct care workers would provide about 5 percent more in the hourly rate, before taxes, in the fiscal year beginning July 1.

For the current fiscal year, the General Assembly approved about $5 million for a pay raise which boosted the average hourly rate from $10.82 to $11.18.   Another 5 percent would raise the average hourly rate by 56 cents to $11.74.

Governor Raimondo’s latest proposal also would provide an increase for employer-related costs for direct care workers, Wood said. 

Raimondo had been asked to include another pay increase for direct care workers in her budget plan from State Sen. Louis DiPalma, D-Middletown, First Vice Chairman of the Senate Finance Committee.

DiPalma said in a recent telephone interview that he considers Raimondo’s wage proposal for Fiscal 2018 the first step in a five-year effort to raise direct care salaries to $15 an hour.

In the meantime, the minimum wage may well be on the rise as well. The Governor’s budget proposal would increase it from $9.60 to $10.50, while Rep. Leonidas P. Raptakis, (D- Coventry, West Greenwich, and East Greenwich) has countered with a $10 minimum wage bill.

 DiPalma was asked whether a $15 hourly rate would be enough for the direct care workers in five years.

He said he plans to introduce legislation this year to link the wages of direct care workers to the consumer price index.

“We can’t tie the hands of future legislatures,” by committing them to specific dollar amounts in advance, DiPalma said.

“It’s a case of wanting people to have an appreciation for the intent of what we want to do” in placing value on the work of those who care for some of the state’s most vulnerable citizens, he said.  

A spokeswoman for the Executive Office of Health and Human Services said DiPalma and Senate President M. Teresa Paiva Weed, who backs the so-called “15 in 5” plan, “have been important partners in advocating for investments in our direct care workforce.”

“We look forward to working with our partners in the General Assembly to implement our second wage increase this year, as well as increases over multiple years as possible,” said the spokeswoman, Sophie O'Connell.

A year ago, a conference hosted by the Sherlock Center on Disabilities at Rhode Island College concluded that higher wages are a critical component in stabilizing the direct care workforce nationwide. In Rhode Island, the average annual turnover is about one third, according to the Community Provider Network of Rhode Island. That means that an adult with developmental disabilities, who relies on a good relationship with caregivers, can expect that every year, one out of every three staffers will  to the job.

Revised Individual Assessment Suggests Greater Cost

Unexpected  increases in billing from private service providers, as well as higher projections for future costs, would add an additional $5 million to federal and state-funded Medicaid-services for existing clients in the current fiscal year, according to the Governor's budget brief. (Some of that net increase would be offset by other savings.) 

In November, the Division of Developmental Disabilities began using an updated version of an assessment called the Supports Intensity Scale (SIS) in determining the needs of individual clients. Those assessments are used to assign individual funding authorizations for support services.

“I personally am really thrilled” over the implementation of the new version, called the SIS-A, Wood said. “I know all my colleagues in government feel the same way about it.”

She acknowledged that “there have been all sorts of questions in the past about the validity and reliability of the state’s approach to implementing the SIS.”

And it’s an emotional topic because it’s not just an evaluation, but one linked to funding supports for a loved one, she said.

Since the SIS was implemented in 2011, time-consuming appeals of the results and the corresponding funding levels have become common, and appeals were often granted.

In 2014, the DOJ criticized the way the SIS was being implemented in the findings that laid the groundwork for the consent decree.

“The need to keep consumers’ resource allocations within budget may influence staff to administer the SIS in a way that reaches the pre-determined budgetary result,” the DOJ said at the time. 

In the recent interview, Wood said, “We feel much more comfortable and confident about the validity” of the SIS-A.

As it has been explained to her by the experts, she said, the new versions include refined questions that address some of the more complex needs that “people did not feel were being captured in the original version.”

Wood indicated that in general, higher scores on the SIS-A have  prompted developmental disability service officials to project higher individual funding authorizations. 

Apart from three new questions asking whether a client has hypertension, allergies or diabetes, the SIS-A adopts a risk assessment which includes five overarching questions with multiple parts intended to gauge critical health needs, self-injurious behavior or community safety issues. The questions on the risk assessment were released by the Division of Developmental Disabilities in the last week. Professionals say that with proper support, such risks can be overcome.

A lot of effort already has gone into retraining interviewers, Wood said, although “it will take us two to three years to find our way fully in this new assessment.”

Heather Mincey, social services administrator in the Division of Developmental Disabilities, said the training program has addressed the way interviewers ask questions. The Division of Developmental Disabilities is trying to be responsive to families, clients, and service providers who may not feel like they’re being heard or are unsure what kind of information the interviewer is trying to elicit, she said.

At the same, the Division of Developmental Disabilities is continuing an initiative begun a year ago to save about $1.7 million in Medicaid funding, including almost  $846,000 in state funds, from existing individual funding authorizations that exceed levels indicated in past SIS assessments.

There were so many complaints about the SIS in the latter part of 2014 and the first months of 2015 that BHDDH suspended an effort to rein in the exceptions in the fiscal year that ran from July 1, 2015 to June 30, 2016.  But the initiative to  to reduce those exceptions resumed for the current fiscal year, which began last July.

Wood said that budget figures for the current fiscal year and the one ending June 30, 2018, twice listing $845,750 in savings from realignment of individual funding authorizations, don’t represent a new initiative, but a continuation of the one already underway.

The appeal process remains an option for those who disagree with their allocations.

A new policy enacted by the state last July to respond to a judicial order says that all SIS assessments will be based solely on support needs. It also says that only the Director of Developmental Disabilities has the authority to grant authorizations that exceed SIS levels. Until now, appeals have been decided by a team of administrators.

Wood and other state officials have said they hope the SIS-A will result in a reduction in the number of appeals.

RI Tries To Improve Assessment Used For DD Funding; Families Not Feeling It Yet

Christine Vriend, Senior Trainer for AAIDD

By Gina Macris 

A two-hour discussion about the Supports Intensity Scale, used by Rhode Island to assign funding to adults with developmental disabilities, exposed a big gap between the vision of the professionals who created the assessment and the practical experience of families and service providers who must respond to the extensive questionnaire.  

At the Arnold Conference Center in Cranston Nov. 17, Christine Vriend, senior trainer for the American Association on Intellectual and Developmental Disabilities (AAIDD), explained the newest version of the assessment as a guide for developing better individualized plans of support.

But many family members and service providers described the SIS as a tool for cutting funding. They said interviewers administering the questionnaire have been argumentative and combative, showing little respect for them, while seeming determined to lower assessment scores.

Heather Mincey, administrator of the Division of Developmental Disabilities, said she and other officials are working as hard as they can to make changes.

Mincey

Vriend, said new features of the Supports Intensity Scale are designed to better capture the need for support for exceptionalmedical needs or behavioral issues. 

AAIDD did not design the SIS as a funding tool, but many states use it that way, Rhode Island included. 

In July, in response to a federal consent decree and U.S. District Court order, the state changed its assessment policy in an attempt to separate a determination of what kind of support someone needs from the allocation of money to pay for it. The U.S. Department of Justice and the independent court monitor in the consent decree both have said there was a conflict of interest in having the same agency of state government conduct the assessments and determine the funding.

Most provisions of the consent decree address a shift away from sheltered workshops and isolated day programs to a network of community-based job and leisure activities, in keeping with the 1999 Olmstead decision of the U.S. Supreme Court, which ruled that a reliance on segregated services violates the Americans With Disabilities Act.

Since July, state developmental disabilities officials, under the direction of the Executive Office of Health and Human Services (EOHHS), have begun to re-train their assessors to use the relatively new SIS-A, released by AAIDD in 2015.

One mother, Tammy Russo, had an interview with a newly re-trained assessor last week. She said the assessor collapsed eight questions into one, stringing together references to several types of medical care into a single sentence, making the information sound so complex that she couldn’t follow what was being said.

Russo, however, said the interviewer ultimately gave her a copy of the questionnaire so she could read along as the questions were being asked.

Russo was asked by officials at the forum to follow up on her experience by calling the supervisor of the SIS interviewers.

Ed McLoughlin, another parent, said that in the SIS interview he attended, “the woman clearly was working to get a lower rating.”

Mincey said that kind of feedback has been discussed a great deal: “If you’re not describing exactly what you need and we’re not getting what you need, that information is not part of the SIS.”

The key to answering the questions, Vriend explained, is not to explain what a person can or cannot do but to think about what supports are needed for someone to be successful at a particular activity – even a hypothetical one. Interviewers are instructed to ask all the questions on the form, whether the topics fit an individuals’ current activities or not.

She declined to answer funding-related questions, emphasizing that she works for AAIDD, not the state.

One woman, who declined to give her name, said a mother who knows exactly how to answer questionsin a SIS interview had a “really horrific” experience when her daughter’s funding was reduced from the highest levelto an average level, even though there had been no change in her condition.

“What the mother and the agency had to go through (on appeal) was heartbreaking,” the woman said.

Megan DiPrete, a family member of an adult with developmental disabilities, said it’s her experience that SIS interviews are conducted in a “combative environment.”

“It’s clearly an issue that needs to be addressed, she said.

DiPrete

Another woman spelled out the disrespect she said she witnessed, although she declined to give her name because she works for a direct service provider and is not authorized to speak on the agency’s behalf.

The woman said she asked the interviewer not to speak so fast so that the person under assessment could better follow the conversation. The interviewer refused, saying that if she did so, she would stutter.

Then three people told the interviewer that the person under assessment could not advocate for himself, and the interviewer responded, “Well, he can talk can’t he?”

Vriend likened the discussion that is supposed to occur at SIS interviews as a “table of supports.” The various participants are not supposed to be “butting heads,” she said.

Interviewers have a responsibility to describe the question using consistent language and to help respondents understand the intent of the item, she said. It is important for respondents to be “fully engaged in that process” and provide “perspective and justification for a score.”

All sides should be in agreement with the scores, but if “if you disagree, you should have an avenue to take this further,” Vriend said.

Vriend said AAIDD verification procedures generally confirm the accuracy of the SIS as it is administered in the field. The SIS is used in about half the United States and abroad.

But recurring complaints about the SIS in Rhode Island that have surfaced at public sessions throughout the year indicate there a lack of public confidence in the SIS. AAIDD says public confidence is important in the successful implementation of the assessment program.

In her role as a trainer, Vriend addressed one of the most controversial parts of the assessment in Rhode Island; the need for exceptional supports for individuals for behavioral issues. Those supports can be labor-intensive, and therefore costly. 

She said,  ”We’re not rating the severity of the behavior or how often it occurs. What we’re rating is the support needed to address that behavior or prevent it. If you haven’t had an assault in three years, but one of the reasons is solid support, then we’ve got to recognize that.”

In other public sessions, parents and providers have expressed the view that in some cases, once such exceptional supports are in place and have been given time to stabilize a client, the assessor looks only at the improved behavior. In those cases, all the effort put into realizing those improvements are discounted in the ratings, which lead to lower scores and less funding, they say.

Several suggestions emerged from the audience to help family members and providers feel more confident in the SIS process. They urged the state to put into place several safeguards. Among them:

·         Families and providers should be given copies of the questionnaire so they can read the questions as they are being asked. (On Nov. 18, Mincey issued a statement saying this change will be implemented immediately.)  

·         Families and providers should be informed at the interview that they have a right to appeal and should be given contact information for lodging complaints. They should be asked to fill out evaluation forms on the interviewers

·         Families and providers should be given copies of the completed questionnaires to better understand the scores.

Individuals with developmental disabilities and their guardians have a legal right to their own health care records, including assessments like the SIS, according to the U.S. Department of Health and Human Services.

At the meeting, Mincey acknowledged that families have had difficulty in the past obtaining copies of their loved ones’ SIS results, but she said the Division of Disabilities is now granting those requests.

Mincey referred questions about the SIS to Donna Standish, the SIS supervisor. Standish can be reached at 401-462-2628 or Donna.Standish@bhddh.ri.gov

Lack of Resources Underlies Problems with Supports Intensity Scale, Other RI DD Issues

photo by anne peters  

Eileen Vieira and Greg Mroczek both express concerns about the assessment used to determine funding for their adult children with developmental disabilities. 

By Gina Macris

The issue of resources – a scarcity of services and the money to finance them – ran like a thread through a public forum on Rhode Island’s developmental disability system Nov. 9 that brought together families, provider agencies and state officials. 

At the same time, participants applauded the willingness of new roster of state developmental disability officials to listen to their concerns.

Much of the discussion, during the meeting at the Cherry Hill Manor Nursing and Rehab Center in Johnston, concerned an assessment called the Supports Intensity Scale (SIS) that is used to assign individual funding packages to those persons receiving services.

“If there was adequate funding to pay for the needs” identified by the assessment, ”we would have much fewer problems with the SIS,” said Tom Kane, CEO of AccessPoint RI, a service agency.

“There’s not enough money there,” he said.

 Kane and others expressed skepticism about the accuracy of the assessment.

For example, Greg Mroczek said his son and daughter are very similar in their disabilities and needs, and yet they were assigned different funding levels.

“It flies in the face of the accuracy of the tool,” he said.

Eileen Vieira, who has a son with developmental disabilities, said some people who do the assessments “have no clue.”

They are not familiar with the person’s medical conditions or mental health issues or what is happening in the client’s life, she said. She said she did not believe the SIS captured her son’s need for behavioral support.

Heather Mincey, administrator in the Division of Developmental Disabilities, acknowledged that “a lot of times the SIS administrators did not get all of the information” necessary to make an accurate assessment of a person’s needs.

Heather Mincey

On Nov. 6, the Division switched over to a new form of the SIS which Mincey said she believes “will help a lot.” Called the SIS-A, the assessment is designed to capture behavioral and medical needs that were sometimes not apparent in results of the original SIS, according to Mincey. 

Kane said he has “never been a cheerleader for the SIS.”

The developer of the SIS, the American Association on Intellectual and Developmental Disabilities (AAIDD), maintains it differs from other assessments because it focuses not on shortcomings but on the supports an individual needs to be successful at a particular task.

Kane, however, said most family members and professionals in the field of developmental disabilities find it difficult to talk about the issues raised in the questions because “you have to examine what’s wrong” to arrive at the necessary supports.

“It’s a deficit-based tool,” he said.

A representative of AAIDD will visit Rhode Island to explain the SIS-A at an information and training session Nov. 17. (See related article.)

Mincey, meanwhile, encouraged parents to file appeals if they believe the SIS results for their sons or daughters are inaccurate – or if they have problems with a shortage of funds for transportation or other issues.

But Vieira indicated that the appeals are continuous and time-consuming, especially for parents who have full time jobs. “You have to appeal and you have to appeal,” she said. 

Brian Gosselin, Chief Strategy Officer for the Executive Office of Human Services, said developmental disabilities officials will use feedback from appeals of decisions on the SIS, along with experiences trying to solve other problems, to improve the system.

In whittling down a backlog of 224 applications for adult developmental disability services, for example, workers learned that nearly half the submissions did not contain all the required documentation, Gosselin said.  That experience will result in a redesign of the application process, he said.

Carla Russo

An independent court monitor in a federal consent decree mandating expansion of community-based services for adults with developmental disabilities has pressed the state to work through the backlog and identify all individuals aged 14 to 21 who might qualify for services after high school. 

One mother, Carla Russo, said her son left school in the 20013-2014 school year and still does not have adult services. 

Iraida Williams, an employee of the Sherlock Center on Disabilities at Rhode Island College, asked whether the application materials would be available in Spanish. Williams has appeared at several public forums on developmental disability services since April 2015, to ask the state to hire a Spanish-speaking social worker or interpreter who could field questions from non English-speaking families.

“That’s the type of feedback that we need,” Gosselin said.

tracey cunningham

Tracey Cunningham, Chief Employment Specialist at the Division of Disabilities, said 23 service providers have applied for a supported employment incentive program that is gearing up as a result of the consent decree.

Nearly every one of the 23 providers has talked about taking on new clients in the process, Cunningham said, although she didn't expect the program to begin operations until January.

If that many agencies do expand, it would be a significant shift from a system that has been in a holding pattern because of a shortage of funding. 

Cunningham said the Division of Disabilities also wants to hear from families who organize their own supports and might want to purchase supported employment services.

One mother, Mary Beth Cournoyer, said parents, who themselves have jobs, need to cover a certain number of hours of care for their sons and daughters and can’t afford to divert much, if any, funding to job development. 

Cunningham said that “we are looking” at the possibility of providing additional funding for supported employment services rather than requiring individuals to stretch their budgets.

Gosselin, meanwhile, said that state officials will be working with consultants from the National Association of State Directors of Developmental Disabilities Services for the next six months to try to come up with better ways to serve individuals and families and at the same time comply with new Medicaid regulations affecting individuals with developmental disabilities.

All photos by Anne Peters