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

Kie and Moseley great shot.jpg

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

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

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.)

PUBLIC FORUM UPDATE: Live Streaming Of Monitor’s Appearance Via Facebook Sept. 11

The family advocacy group RI FORCE plans to use its Facebook page to live stream the Sept. 11 public forum sponsored by the Rhode Island Division of Developmental Disabilities, according to the organization’s chief spokesman, Christopher Semonelli. Once the meeting concludes, the video will remain available on Facebook, Semonelli said in an email.

The public forum, focusing on employment, will feature a question-and-answer session by the independent federal court monitor overseeing the implementation of inclusive policies and practices as part of the state’s compliance with a 2014 civil rights decree.

RI FORCE stands for Rhode Island Families Organized For Reform Change and Empowerment, and a link to the group’s Facebook page is here.

The meeting will be from 4:30 to 6 p.m., will be at the East Providence Senior Center, 610 Waterman Ave., East Providence. (related article below.)

(This article originally identified Semonelli as the president of RI Force. He is the vice-president. Wilfred Beaudoin is the president.)

RI DDD Forum Sept. 11 To Feature Q & A With Olmstead Consent Decree Monitor

(The date for the forum initially was incorrect in the headline for this article. It has been corrected.) 

By Gina Macris

Moseley headshot 2016.JPG

The independent federal court monitor overseeing Rhode Island’s compliance with the integration mandate of the Americans With Disabilities Act is scheduled to make a rare public appearance outside the courtroom  – by video conference – Sept. 11 at a quarterly community forum in East Providence sponsored by the state Division of Developmental  Disabilities (DDD).   

According to a DDD announcement, the monitor, Charles Moseley (pictured at left). The forum will focus on employment–related issues, including what it means to make an “informed choice” about work, and how someone who chooses not to work can apply for a  variance to the employment first  policy.

The Sept. 11 meeting will be at the East Providence Senior Center, 610 Waterman Ave., from 4:30 to 6 p.m.

The 2014 agreement with the U.S. Department of Justice requires the state to de-segregate daytime work and non-work services for adults with developmental disabilities over a 10 year period to comply with the integration mandate embodied in Title II of the ADA.

The integration mandate was re-affirmed by the Olmstead decision of the U.S. Supreme Court in 1999, which involved two plaintiffs with developmental disabilities who had been held in a Georgia mental hospital for years after their treatment concluded because of a dearth of housing in the community.  

Rhode Island’s was the first Olmstead consent decree in the nation – but not the last - that addressed the integration of daytime activities for adults with developmental disabilities.  Earlier agreements which drew their authority from the same `High Court decision focused on segregated housing.  

Challenging RI Consent Decree Deadline Looms Sept. 30 For Employment Of Young Adults With DD

By Gina Macris

The state of Rhode Island has already met or surpassed the 2018 supported employment goals for adults with developmental disabilities who were in sheltered workshops or segregated day programs when a federal civil rights consent decree was signed more than four years ago.

But it appears the state will not meet a looming Sept. 30 employment deadline for young people seeking adult services for the first time; specifically, 426 individuals who left high school special education programs between 2013 and  2016.

The prospect of the missed deadline – itself a two-year extension of the original -  suggests a lack of underlying funding, if not for specific employment–related services, then for the entire package of supports that newcomers usually seek when they look for an adult service provider.

For years, representatives of the three dozen private agencies reimbursed by the state Division of Developmental Disabilities (DDD) have told legislators that the amounts they are paid do not cover the actual costs of providing services.

Taking on new clients often means taking on additional debt, they have testified.

To be sure, DDD has pressed forward with reforms on a number of fronts, most prominently a program of enhanced reimbursement rates to private providers for supported employment services and performance payments for job placement and retention. The program was launched in January, 2017. 

 One agency that extended itself to embrace the new program, because officials believed it was the right thing to do, nevertheless ended the year with debt in that account in the high five figures, according to several sources.

In January of this year, the rules were relaxed to allow agencies to spend from the supported employment program to look for jobs for clients already on their caseload, providers have said.  

In 2018, young adult participation in the performance-based employment program  “has not significantly increased despite the increase in available funds for this population,” according to a second quarter report from the state to an independent court monitor in the consent decree case. The report has been obtained by Developmental Disability News.

The General Assembly initially allocated a total of $6.8 million in federal-state Medicaid funding that financed the supported employment program from January, 2017 through June, 2018, but more than half the money was not spent. At the end of June, BHDDH was scheduled to return to the state about $4.1 million, according to a House fiscal report.  State revenue accounts for about $2 million of the total.

As of June 30, a total of 231 young adults were employed, a figure that slightly exceeds the requirement that 50 percent of “youth exit” members have part-time jobs by that date.  

But it has taken the state four years to reach the half-way mark as it works toward the consent decree goal of full employment for young adults, leaving only three months to find jobs for the remaining half of the “youth exit” population – nearly 200 individuals. 

By comparison, the state has found part-time jobs for a total of 334 adults in segregated day programs – more than double the target for Jan. 1, 2019. In addition, 203 individuals who once worked in sheltered workshops now work in the community.  Those placements slightly exceed the 200 the consent decree requires by New Year’s Day.  (Taken together, the employment figures in the various categories do not include 18 clients whose past placements count toward consent decree goals but who no longer receive state services.)

RI DIVISIon of Developmental Disabilities

RI DIVISIon of Developmental Disabilities

Among all those who got jobs through the supported employment program, 81 percent have remained employed for at least six months, according to the state.

The state also closed its last sheltered workshop, at the John E. Fogarty Center of North Providence, in the second quarter of the year, according to the state’s report. All participants moved either to competitive employment or day programs, a DDD spokeswoman said.  

While the supported employment program is only about jobs, young adults seeking a service provider for the first time tend to want something else that is more comprehensive, particularly since they work only an average of about 14 hours a week, according to the state’s figures.

They and their families generally want one provider to give them an array of work and non-work supports that take into account all their needs and preferences.

Some choose to bypass a service agency altogether and manage their own program of services, hiring staff and arranging schedules while a fiscal intermediary pays the bills from a funding authorization approved by the state.  Self-directed individuals have reported difficulties getting services from the supported employment program.

Of about 500 so-called “self-directed” individuals and families, it’s not clear how many run their own programs by choice and how many first sought and could not find an agency to provide services appropriate to their needs. The number of self-directed programs has grown in the last few years, by all accounts. In all, about 3,700 adults receive services funded by DDD.  

The impetus for the supported employment program came from an order issued in May, 2016, by  U.S. District Court Judge John J. McConnell, Jr., who presides over the case.

But the supported employment program now in place does not address basic funding mechanisms for adults with developmental disabilities, which, according to the U.S. Department of Justice, incentivize a segregated system of day services. The DOJ criticized both the funding and regulatory structures in the 2014 findings that laid the groundwork for the consent decree.

During the past year, BHDDH has engaged providers, families and advocates in an effort to rewrite DDD regulations, with an eye toward giving consumers of services and their providers greater flexibility to individualize programs and help meet the “integration mandate” of the Americans With Disabilities Act, which the consent decree is meant to enforce.

The proposed changes were submitted late in 2017 to the Office of Regulatory Reform – part of the Office of Management and Budget – but the draft regulations have not yet been posted for public comment on the website of the Secretary of State. 

Kevin Savage, the licensing administrator at BHDDH, said August 21 he expects the Office of Regulatory Reform to complete its work and release the regulations any day.

The federal court monitor in the case, Charles Moseley, has often expressed concern about teenagers and young adults with developmental disabilities because, without appropriate supports, they are at risk for a life of isolation once they leave high school.

The 2014 consent decree originally required the state to find jobs for all members of the young adult, or “youth exit” category,  by July 1, 2016. When the deadline arrived, however, only 29 individuals had jobs in a group that, at that time, numbered 151. 

After the monitor,  Charles Moseley, ordered the state to make sure it counted all young adults who met eligibility requirements for adult services under state law, the size of the “youth exit” population ballooned. It is now 426.

McConnell, the presiding judge, extended the employment deadline for all young adults to 2018. He required half of them to have jobs by June 30 – a goal that has been met – and the remaining 50 percent to find work by Sept. 30.

Going forward, the state said in its report, DDD is planning amendments to contracts with providers to use unspent supported employment money from the first half of the year, as well as other strategies to improve service to the young adult group.

One promising initiative, say state officials, is a cooperative agreement involving the Department of Labor and Training (DLT) and as many as 11 providers of developmental disability services, the Sherlock Center on Developmental Disabilities at Rhode Island College, and the Rhode Island Developmental Disabilities Council to forge relationships with business and generate at least 77 new jobs. The Business Innovation Factory will provide enhanced technical assistance for the overall project, financed through workforce development funds administrated by DLT.

DDD also raised the possibility that some young adults may ultimately choose not to work, a decision that must be documented in a “variance” to the state’s Employment First policy for adults with developmental disabilities. Employment – and the variance process – will be discussed at a public forum Sept. 11 at the East Providence Senior Activity Center, 610 Waterman Ave., East Providence, on Sept. 11.

 

 

 

Artist And Others Who Rely On State-Funded Support Speak Up For What Matters To Them

Wendy LeBeau.jpg

By Gina Macris

Most people don’t  give a second thought to what it takes to meet a friend for coffee or a shopping foray. They just call or text and go. 

But for Wendy LeBeau, a Rhode Islander living with the challenges of developmental disabilities, arranging a casual get-together is a big deal. She’d have to get someone to drive, not so easy when her schedule of state-funded supports allows limited time for one-on-one service.

 On Aug. 7, LeBeau joined some 50 people at an event space next to The BRASS in Warren– an art gallery where she works – for the first of several  “Community Conversations” sponsored by the Community Provider Network of Rhode Island, a trade association of private service providers that support adults with developmental and intellectual challenges.

When LeBeau was asked about her ability to connect with friends, she replied “only at work.”  She is a contributing artist at The BRASS, where she has created abstract canvases of dancing, swishing color. 

The work of LeBeau, which features a carefully chosen palette and controlled style that belies the flowing compositions, has been shown at the National Portrait Gallery at the Smithsonian Institute and an annual Art Ability exhibit at Bryn Mawr Rehab Hospital in Philadelphia.

LeBeau’s comments, as well as those of others, put a face on what it means to depend on others to arrange even a simple outing.  

The remarks responded to questions posed by Donna Martin, executive director of CPNRI, who made her way around the audience, asking individuals seated in a huge circle of chairs to share their experiences, including any barriers they faced to feeling included in their communities.

In various ways, LeBeau and others pointed to a common underlying theme – a shortage of qualified staff available to individualize services so that adults with developmental disabilities may access their communities for work and leisure, as envisioned by the Americans With Disabilities Act. 

Margaret, who uses a wheelchair, said as much: “We need more staff.”  

Since a $26 million funding cut by the General Assembly forced private service providers to slash wages in 2011, the field has been plagued by high turnover and difficulty among employers in recruiting and retaining new staff.  At the same time, a federal consent decree in effect since 2014 requires more training and professionalism in the way adults with developmental disabilities receive support services. 

Since 2011, there have been a few incremental wage increases, but the field of direct care has not recovered. 

Martin puts the current average pay for direct service workers at about $11.45 an hour.  That’s $1.30 above the minimum wage of $10.10. Rhode Island’s minimum wage is set to increase to $10.50 January 1, 2019, but the pay for those who work with adults with developmental disabilities will remain the same. 

Darlene Faust, Director of Self-Advocacy and Work Preparedness at Looking Upwards, cited the labor shortage and a lack of adequate transportation as barriers to inclusion.

She said her agency recently lost a staff member to Walmart.

After the meeting, Faust elaborated on the staffing situation. When workers call in sick, she said, she and others in management often must fill in to provide direct support, because the back-up pool is so small.

And when the agency is short-staffed, trips into the community must be prioritized. Clients must get to their doctors’ appointments and to their jobs no matter what, she said. 

Faust has worked with adults with developmental disabilities for 20 years, she said, because “I love it.”

But the struggles are “heartbreaking right now,” she said. “We’re all in it together. It’s all the same community, whether you’re providing service or receiving support.”

“People outside the community don’t always understand,” she said.

A number of people who spoke in American Sign Language said that a lack of interpreters posed barriers in various areas of daily living, including their ability to find jobs.

Meanwhile, a Woonsocket man who called himself Tim said he is 28 and has been looking for work since he was in high school.

Although several  prominent  corporate employers  have taken the lead in hiring adults with developmental disabilities in Rhode Island, Tim said he believes there is still “a lot of prejudice out there” against taking on workers who face intellectual or developmental challenges. 

He said it would be helpful if agencies providing employment supports could offer “task-oriented vocational training” to job seekers before they actually apply for a particular position.

The “community conversation” is the first of five such meetings planned by CPNRI in the coming months to cultivate and encourage sustained grass-roots advocacy on issues affecting anyone with a stake in services for adults with developmental disabilities, Martin said after the meeting.

The schedule for the remaining conversations, in different areas of the state, is still being finalized, she said.

CPNRI also plans candidate forums for legislative and gubernatorial candidates after the September primary elections, Martin said.

In a show of hands, about two thirds of the audience indicated they were registered to vote, including most of those who receive services funded by the state.

 

RI DD Service Providers Launch "Community Conversations" To Promote Effective Advocacy

On Tuesday,  Aug. 7 in Warren, RI, The Community Provider Network of Rhode Island (CPNRI), will hold the first of several “community conversations”  to focus on priorities for adults with developmental disabilities.

The event, from noon to 1:30 p.m. Tuesday, will be at The BRASS, an art gallery at 16 Cutler St., Warren.

CPNRI describes the “community conversations” as forums to engage adults with intellectual and developmental disabilities, their families, friends, direct support staff, and any others interested in becoming more effective advocates.  

The BRASS, the site of the first meeting, is a gallery featuring work of artists with developmental disabilities who are supported by  L.I.F.E. (Living in Fulfilling Environments).

L.I.F.E. and Looking Upwards, another East Bay provider of services for adults with developmental disabilities, are co-sponsors of Tuesday’s event.  

The remaining schedule for the community meetings has not yet been firmed up, according to Michael Beauregard, a spokesman for CPNRI, a trade organization for about two dozen, or two thirds, of private providers of services for adults with developmental disabilities in Rhode Island. 

In May, CPNRI sponsored a rally that drew about 1000 people to the State House to call for restoration of an $18.4 million cut to developmental disability services that was then under consideration by the House and Senate. Almost all the money has been put back into the budget which went into effect July 1.

But wages for front-line workers remain flat – at an average of roughly $11.50 an hour –at a time when federal officials are pressing for more raining and higher quality services as part of a 10-year mandated overhaul of the developmental disability system to comply with the Americans With Disabilities Act.

Anyone interested in attending Tuesday’s meeting is asked to RSVP  here.

CPNRI also may be reached at 401-773-7771. 

RI Governor's Commission on Disabilities Solicits Public Opinion Through July 27

This week the Rhode Island Rhode Island Governor’s Commission on Disabilities is holding a series of forums throughout the state to gather comments and concerns from the public about current services, unmet needs and suggestions for improving services.

According to an announcement  from the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, four meetings remain on the agenda, including one today, July 25, at the Middletown Public Library. The forum runs from 4 p.m. to 6 p.m.

The remaining schedule is:

  • Thursday, July 26: Peace Dale Public Library, Peacedale, 3:30 p.m. to 5:30 p.m.
  • Thursday, July 26: Adams Public Library, Central Falls, 3:30 p.m. to 5:30 p.m.
  • Friday, July 27: Rochambeau Library, Providence, 3 p.m. to 5 p.m.

 

 

  

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                         Photo By Anne Peters

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

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

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

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

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

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

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

Budget Language Opens Door To Innovation

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

RI House Finance Committee Recommends Restoring DD Services To Current Levels

By Gina Macris

RI HOUSE SPEAKER Nicholas A. Mattiello  

RI HOUSE SPEAKER Nicholas A. Mattiello  

In a midnight session June 8, the Rhode Island House Finance Committee added nearly $18 million to Governor Gina Raimondo’s original budget proposal for developmental disabilities in the fiscal year beginning July 1.

Both the House and Senate leadership and the governor herself supported increased funding for developmental disabilities after better-than-expected revenue projections were announced May 10.

The additional funding, all Medicaid money, includes about $8.8 million in state revenue and the remainder from federal funds, according to documents prepared by the House fiscal staff. The Finance Committee’s budget raised Raimondo’s bottom line for developmental disabilities from $250.8 million to $271.4 million. The state’s share would be $126.3 million.

Raimondo’s original budget would not have allowed the state to continue to implement a 2014 federal consent decree designed to correct violations of the Americans With Disabilities Act, according to an independent court monitor, who had been prepared to make recommendations to the judge in the case to ensure adequate funding.

The overall $9.55 billion statewide package passed the House Finance Committee, mostly along party lines without debate, on a vote of 15-3. Opposed were Republicans Patricia Morgan, a gubernatorial candidate representing West Warwick, Warwick, and Coventry,  Antonio Giarrusso, representing East Greenwich and West Greenwich, and Robert Quattrocchi, representing Scituate and Cranston.

The measure is slated to go before the full house June 15, and Chairman Marvin Abney-D-Newport, said there would be plenty of debate on the House floor.

 As it now stands, the budget maintains the level of developmental disability services at current reimbursement rates to private providers. The Finance Committee did not reverse a $3 million cut to the state-run group home system imposed by the Governor, and it does not improve wages for direct care workers, as has been the practice in the last three budgets.

Direct care workers in developmental disability services make significantly less than their counterparts in Massachusetts and Connecticut.

Providers say they struggle to recruit, train and keep qualified employees, who often go to neighboring states or leave the field entirely. 

In a briefing with reporters before the Finance Committee convened, House Speaker Nicholas A. Mattiello said the budget did not go further in addressing needs of the Division of Developmental Disabilities because of the necessity to restore funding in many human service areas.

“We were thinking of all segments of society and balanced it as well as we can,” he said. “We took care of our economy, and we took care of our citizens.”

The Finance Committee added $15.7 million payments for hospitals and another $17.2 million to the Department of Children, Youth and Families for services for children and teenagers in state care. Some of the added DCYF funding would provide for older teens who choose to receive services until age 21 – an option that has been unavailable in recent years.

The House Finance Committee also granted a 10 percent rate hike to in-home caregivers of the elderly and disabled. Most of the individuals served by those workers do not have developmental disabilities, according to Sharon Reynolds Ferland, the House Fiscal Advisor. But Mattiello said there are significant savings to the state in keeping those individuals out of nursing homes.

The revised budget also reversed Raimondo’s plan to require Medicaid patients to shoulder co-pays for health care, although the original proposal was not designed to affect individuals with disabilities.

Just as the Finance Committee increased Medicaid reimbursement rates to hospitals to make them competitive with Massachusetts and Connecticut, Mattiello said, he believes wages for direct care workers probably should be raised to keep them in Rhode Island.

“Yes, I do believe we have to look at those rates,” he said in response to a question about the wages. He said direct care wages “should probably be increased but there’s so much resources, and when you run out, you run out.”

Mattiello held out the hope that direct care worker wages in developmental disabilities would be revisited next year.

He said he wants to continue to increase resources for developmental disabilities, “but that increase is incremental and slower than we would like.”

“We’re continuing to work on improving our economy so we can continue to work on the needs of society and balance those needs,” Mattiello said.

While the House leadership usually drives the budget, the Senate will weigh in after the package clears the lower chamber.

Court Monitor Says Court Order Not Needed To Ensure RI DD Funding; State Budget To Move Forward Thursday In House Finance Committee

By Gina Macris

An independent court monitor has advised a federal judge that a court order isn’t necessary to ensure adequate funding and staffing for Rhode Island’s developmental disability services.

In a June 1 report to Judge John J. McConnell, Jr. of U.S. District Court, the monitor, Charles Moseley, cited recent assurances from Governor Gina Raimondo that revisions will be made to the state budget for the fiscal year beginning July 1 to enable the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to continue implementing a 2014 consent decree correcting violations of the Americans With Disabilities Act (ADA.)  

After a positive report from the semi-annual Revenue Estimating Conference May 10, House Speaker Nicholas A. Mattiello and Senate President Dominick J. Ruggerio took the lead in promising to restore $18.4 million in reimbursements to private service providers that Raimondo had originally eliminated from her budget proposal for the fiscal year beginning July 1.  Raimondo's original proposal had been unacceptable to Moseley, who had told McConnell in April that the cut would leave BHDDH unable to maintain consent decree reforms.  

The May  Revenue Estimating Conference concluded the state would take in a total of $135 million more than had been previously projected to close out the existing budget and to fund the next one, but Mattiello warned that extra cash should not be viewed as a panacea, because of multiple demands on the state’s resources.

Those obligations could include an estimated $24 million in federal and state Medicaid funds the state has not budgeted for retroactive payments to nursing homes. Whether the state must make those payments is wrapped up in a lawsuit brought by nursing home operators in state court over reductions in reimbursements imposed by the Raimondo administration.

The nursing homes prevailed in the litigation and the state failed to file a timely appeal, with the administration blaming a lawyer at the Executive Office of Health and Human Services who simply missed a May 23 filing deadline. The state is now trying to convince the judge in the case to accept an appeal anyway.  

Payments to nursing homes would eat up about $12 million in state revenue, or 8 percent of the $135 million in extra state revenue lawmakers had been planning to use to fill holes in the budget – including reimbursements to private providers of developmental disability services. (The remainder of the retroactive payments would come from the federal government's share of the Medicaid program.) 

The revised budget is scheduled to go before the House Finance Committee the evening of Thursday, June 7.

Besides an enhanced bottom line on funding, the court monitor will be looking for the addition of three BHDDH employees to staff a quality improvement unit which is deemed critical to ensuring that current and future reforms adhere to consent decree standards.

It is not immediately clear how those three added staffers would be used. As late as the first week of May, the monitor and BHDDH officials had been at odds about both the number of officials needed in the quality improvement unit and their respective roles.   

The consent decree gets its authority from the 1999 Olmstead decision of the U.S. Supreme Court, which ruled that Title II of the ADA requires services for disabled individuals to be offered in the least restrictive environment that is therapeutically appropriate. That environment is presumed to be the community.

In 2014, the U.S. Department of Justice cited Rhode Island’s overreliance on sheltered workshops and adult day care programs as violations of  Title II of the ADA. In the consent decree, the state agreed to ten years of federal oversight while it transforms the segregated system of daytime services to an integrated one based in the community.

This article has been corrected to show that, depending on a judge's final ruling, half of an unbudgeted $24 million in retroactive payments to Rhode Island nursing home operators would come from state revenue.

Amid Rally Drawing 1,000 To RI State House, Gov Pledges To Go Beyond Status Quo In DD Services

raimondo at 2018 rally.jpg

RI Governor Gina Raimondo, left, acknowledges the crowd in the State House Rotunda at a rally May 23 while Hayley Baccaire interprets in American Sign Language. 

By Gina Macris

As 1,000 people with developmental disabilities and their supporters rallied at the Rhode Island State House May 23, Governor Gina Raimondo pledged not only to restore $18.4 million she had proposed cutting from developmental disability services in the next budget, but also to invest in transforming the system.

“I’m here to tell you we’re going to do the right thing,” Raimondo promised the demonstrators. “We’re going to put the $18 million there. We’re going to make sure that the resources are there in order to protect the system,” as well as to “make the system more stable and also transform the system.“

Raimondo, House Speaker Nicholas A. Mattiello, and other legislators addressed hundreds of adults with intellectual and developmental disabilities, their caregivers and family members, who packed the State House Rotunda and the galleries on the second and third floors, while hundreds more milled outside on a nearly cloudless day, bringing the overall crowd to an estimated 1,000.

Meanwhile, a coalition backed by organized labor released a statement saying that 84 percent of Rhode Islanders support a minimum wage of $15 an hour for those who provide direct support to individuals with developmental disabilities, according to a poll done in April by Fleming & Associates.  

In January, Raimondo proposed cutting $18.4 million from reimbursements to private providers for the budget cycle which begins July 1.

But in her appearance at the rally, organized by the Community Provider Network of Rhode Island (CPNRI), Raimondo said that she would not only work with the House and the Senate to reverse that cut but also would support additional investments in developmental disability services.

Raimondo, Mattiello, the House Speaker, and the Senate President, Dominick Ruggerio, all have gone on the record supporting the restoration of the $18 million for developmental disability services since May 10, when the state’s semi-annual revenue estimating conference concluded that revenues will run about $135 million higher in the next 14 months than had been previously anticipated.

Of the three leaders, Raimondo offered the most explicit statement of support yet at the May 18 rally:    

“We’re going to continue with you for a long time and make sure we raise the wages” of caregivers, she said.

Nicholas A. Mattiello

Nicholas A. Mattiello

Mattiello said, “I know that there are cuts proposed in the budget, but rest assured that we will address those appropriately and make the proper restoration.”

“We’re here to serve and to help,” he said. “And I can think of no better or more important group to help than you folks that are right in front of me.”

Mattiello said he has seen the impact of developmental disabilities on people’s lives, and “that impact weighs significantly on me.”

Senate President Ruggerio was scheduled to speak but was caught up in a meeting and sent his regrets, according to Sen. Louis P. DiPalma, D-Middletown, the first vice-chairman of the Senate Finance Committee.

DiPalma, a persistent and vocal advocate for developmental disabilities, said the state must provide enough funding to improve the wages of caregivers and support a shift from sheltered workshops and segregated day services to a community-based network of integrated services as required by a 2014 consent decree between the state and the U.S. Department of Justice (DOJ.)  Implementation of the decree, overseen by a U.S. District Court judge, a federal court monitor, and DOJ lawyers, is designed to correct violations of Title II of the Americans With Disabilities Act, which gives all those with disabilities the right to access services in their communities.

“As long as I plan to be in the Senate, those are my goals,” DiPalma said. “At the end of the day, this is about ensuring that individuals with intellectual and developmental disabilities have the ability to lead full and prosperous lives, like all others.”

Federal officials say the changes required by the consent decree are a matter of civil rights. Implementation of the decree, overseen by a U.S. District Court judge, a federal court monitor, and DOJ lawyers, is designed to correct violations of Title II of the Americans With Disabilities Act, which gives all those with disabilities the right to access services in their communities.

Rep. Cale Keable, D-Burrillville and Glocester, chairman of the House Judiciary Committee, emphasized the importance of the turnout in sending a message about the large numbers of people affected by the developmental disabilities budget.

“As lawmakers, we try to allocate our scarce resources to seemingly unlimited problems,” he said, but “we all must remember our priorities.

“We are all Rhode Islanders, all human beings. At our most fundamental level, we have a basic obligation to look out for one another. “

Stairway to RI House 

Stairway to RI House 

He asked the audience to help him advocate for the funding they need for services and for the raises their caregivers deserve for all their hard work.

A coalition called Rhode Islanders In Support of Individuals With Developmental Disabilities said in a statement that most direct support workers in Rhode Island make just over $11 an hour, while Massachusetts and Connecticut have negotiated a minimum of $15 an hour for those who do the same work.

The coalition includes the New England Health Care Employees Union (District 1199 of the Service Employees International Union), the Rhode Island Federation of Teachers and Health Professionals, The United Nurses and Allied Professionals, the International Association of Machinists and Aerospace Workers, and others. 

Some of the umbrella labor organizations in the coalition represent both direct care workers in the private sector and public sector employees  – including those employed in state-run group homes – who just negotiated a cumulative 7.5 percent wage increase by Jan. 1, 2020, some of it retroactive to Jan. 1.  

The coalition announced a social media campaign calling on lawmakers to increase Rhode Island direct support wages to $15 an hour this year. The coalition supports companion bills in the House and Senate that would do just that. The legislation is sponsored by Rep. Evan Shanley, D-Warwick, and Sen. Adam J. Satchell, D-West Warwick.

If a $15 floor on wages is not enacted, the General Assembly should couple an overall increase in developmental disability funding with a directive that some of the money go to raises for direct support workers, at is has in the past, said Jim Parisi, a spokesman for the coalition.

“We’re happy the Assembly is planning to restore the budget cuts, but we still think the raises are important,” Parisi said May 24. The depressed wages among direct care workers in the private sector are a “long-term problem” that must be corrected, he said.

As a matter of strategy, DiPalma, the vice-chairman of the Senate Finance Committee, has favored a more gradual approach, launching a “15 in 5” campaign in 2016 to reach the $15 mark in five years.

There have been three small raises for direct care workers in each of the last three budgets, including the current one, but the minimum wage has also gone up. Since 2012, the minimum wage in Rhode Island has increased 30 percent, while direct care wages have risen only 1.8 percent, according to figures compiled by CPNRI, the trade association of service providers that sponsored the rally.

CPNRI favors introducing a proviso in state law that would trigger an increase in pay for direct care workers anytime there is an increase in the minimum wage. 

Donna Martin, executive director of CPNRI, summed up the issues affecting individuals with intellectual and developmental challenges, their families, and service providers:

“We all face increasing unfunded costs of doing business, staff wages declining in value against inflation, staff working multiple jobs to make ends meet, service providers struggling to recruit and retain qualified staff, families unable to access services due to workforce issues.“

 “I’m hopeful the excitement and commitment expressed here today will carry forward to future budget cycles and that our leaders will support the policies and investments needed to ensure that all Rhode Islanders with IDD (intellectual and developmental disabilities) will be able to take their rightful place in our community,” Martin said.

At the rally,  CPNRI distributed background information on the funding issue, including statistics showing that Rhode Island lags behind neighboring Massachusetts and Connecticut and below the national average in spending on adults with developmental disabilities.

Rhode Island’s average spending for residents of group homes with six or fewer residents was $114,973 per person in 2015, the latest year for which figures are available, according to the State of the States in Developmental Disabilities Project at the University of Colorado.

That figure includes state-run and privately operated group homes.  When only private providers are considered, the average per-person cost is about $60,000, according to CPNI’s own calculations. 

The State of the States project, meanwhile, reports that the average per person spending nationwide in group homes in 2015 was $129,233.

Massachusetts spent $170,682  and Connecticut spent $173,067 per person in group homes with six or fewer residents.  

Those numbers don’t tell the whole story, said Tom Kane, CEO of AccessPoint RI, a member of CPNRI who has presented the figures to both House and Senate finance committees.

In 2015, Massachusetts and Connecticut spent an average of $287,434 and $403, 496 per person, respectively, on those with intellectual or developmental disabilities living in institutions, according to the State of the States project. The national average was $256,400

But Rhode Island spends nothing in this category – facilities with 16 or more – because it closed its institution more than 20 years ago, Kane has testified. Rhode Islanders who in neighboring states would be institutionalized are instead living in their communities at significantly lower cost, Kane has testified.

The restoration $18.4 million to the developmental disability system would restore the status quo, but to stabilize services and move forward the state should invest an additional $15 million, Kane has said.

The currently enacted developmental disabilities budget is $25.9 million, almost all of it Medicaid funds reimbursed at a rate of about 52 cents on the dollar by the federal government.

Raimondo would raise the budget to $272.2 million to cover an existing deficit as a one-time event before imposing the cuts that she now says she would restore. . 

RI Gov Pledges To Support "Current Level" Of DD Services In FY 19; No Fiscal Details Yet

By Gina Macris

Rhode Island Governor Gina Raimondo says her administration is committed to maintaining “the current level of services” for adults with developmental disabilities in order to meet the demands of a 2014 consent decree between the state and federal government.

But in a letter to a federal court monitor in the consent decree case, the governor did not spell out how much money the administration believes the state should spend.

The consent decree is a 2014 agreement between the state and the U.S. Department of Justice (DOJ) which requires Rhode Island to correct violations of the Americans With Disabilities Act by enabling adults with intellectual or developmental challenges to seek competitive employment and enjoy community-based, integrated non-work activities.

In the letter to the monitor, Raimondo wrote: “I will continue to work collaboratively with the General Assembly on all funding recommendations, including those supporting efforts under the Consent Decree.”  

Following better-than-expected revenue projections issued May 10, both House and Senate leaders said that at a minimum, they support restoration of an $18.4 million reduction in reimbursements to private service providers that Raimondo has proposed for the budget cycle beginning July 1.

The consent decree monitor, Charles Moseley, had sought three specific assurances from Raimondo, in the form of a letter or statement to U.S. District Court Judge John J. McConnell Jr.

Moseley asked that the letter or statement say that the budget would:

  •  “be re-set to reflect current FY 2018 expenditure and service levels”
  •  “continue to be revised throughout FY 2019 as needed to fully fund the provision of services”           consistent with requirements of the consent decree
  •  provide “sufficient personnel resources” to the Division of Developmental Disabilities to   “carry out  quality improvement activities consistent with Consent Decree requirements.”

Raimondo’s letter to Moseley, dated May 14, contains no details about any budget changes she may be planning. Nor does it mention quality improvement activities. 

On May 18, a spokeswoman for Raimondo said that “increasing funding for developmental disability support services is one shared priority for which she (the governor) continues to advocate as we further engage in discussions with the General Assembly about the final budget."

Asked whether the governor supports the employment of adults with disabilities as one of the state's workforce solutions, the governor's spokeswoman pointed out the new Real Pathways RI program. It is a workforce investment initiative that focuses on job-seekers who face various barriers to employment. Among the public, private, and non-profit organizations that participate in the program are four providers of developmental disability services, who are working with Home Depot and CVS to match their clients to jobs. 

Moseley had requested a statement from the governor on her position as he prepared to make recommendations to McConnell about what court action, if any, might be needed to ensure that compliance with the consent decree moves forward.

At the most recent court hearing April 10, the judge directed Moseley to find out if there was consensus among state officials and DOJ lawyers about a course of action the court might take to ensure enough funding. Failing such an agreement, McConnell said, he would hold an evidentiary hearing to lay the groundwork for a court order.

Moseley has concluded that Raimondo’s proposed budget, as it now stands, is insufficient to continue to support the modest salary increases to direct support workers put forward by Raimondo and approved by the General Assembly in the last two years. In addition, it would not allow the state to “continue services at current levels,” he said.

The monitor described his efforts to get a sense of the state’s position a  letter to Eric Beane, the Secretary of Health and Human Services, dated May 9. That was a day before the state’s revenue estimating conference concluded that revenues were projected to exceed previous estimates by $135 million through the end of Fiscal 2019.

A week earlier, on May 2, the director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) did not dispute the monitor’s conclusions about the inadequacy of the proposed budget for the next fiscal year, Moseley wrote to Beane.

But the director, Rebecca Boss, “affirmed governor’s commitment to fully fund Consent Decree activities during FY (Fiscal Year) 19 and said that no rate cuts in reimbursements or spending reductions were being proposed,” according to Moseley.

“She noted that the Governor had demonstrated a history of including supplemental funding to the DD (developmental disabilities) services budget when expenditures exceeded enacted amounts and would continue to do so if necessary,”  Moseley wrote.

On separate occasions, both Boss and Beane said assurances about the state’s support of the consent decree could be sought from the governor, Moseley recalled.

For some time, Moseley has said that the Division of Developmental Disabilities needs four fulltime inspectors to conduct onsite reviews of all three dozen private service providers every two years and to ensure their services meet the standards of the consent decree.

He said Kerri Zanchi, director of developmental disabilities, and Kevin Savage, the BHDDH licensing administrator, “argued strongly” during a meeting with Moseley May 2 that two inspectors, or “surveyors” as they will be called, “would be sufficient to meet the need and ensure compliance” along with an data analyst and “other measures.”  Zanchi was to provide a subsequent written analysis of the rationale for the BHDDH approach.

In an earlier report to the monitor, BHDDH officials explained their plan for a centralized, departmental quality assurance unit. In the first year, the two surveyors would be supervised by Anne LeClerc, Associate Director of Program Performance in the Division of Developmental Disabilities, which is also to have the benefit of its own data analyst and a divisional operations manager.

In this initial year, the new “surveyors” will enable the division to rigorously analyze the effectiveness of its existing day services to better plan for future improvements, according to the state’s report to the monitor April 30.

In the second year, however, the surveyors will be assigned to a centralized quality management unit to connect the BHDDH investigatory unit with licensing and certification of private service providers, according to the state’s quarterly report. 

Raimondo's spokeswoman said she supports the BHDDH quality improvement plan. 

To date, there have been no filings in the court record indicating what Moseley will recommend to the judge.

To read Governor Raimondo's letter to the consent decree monitor, click here.

To read the consent decree monitor's letter to the Secretary of Health and Human Services click here.

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 Speaker: General Assembly Likely To Reverse $18 M Cut In DD Services Proposed By Governor

By Gina Macris 

It is likely the General Assembly will restore about $18 million in proposed cuts to private providers of developmental disability services in the budget cycle that begins July 1,” Rhode Island House Speaker Nicholas A. Mattiello said May 10.

In a video interview published by GoLocal Prov, Mattiello said:

“We have about $18 million in proposed cuts to the developmentally disabled community. I don’t want to speak for everybody, but I’m certainly going to strongly advocate for giving the money back and restoring it. I don’t think that’s an appropriate place to go for your cuts. And we were always planning on restoring those funds. I think that thinking is pretty universal.”

Mattiello was interviewed at the conclusion of the May Revenue Estimating Conference, which indicated revenues are running about $130 million to $135 million ahead of estimates for the current fiscal year and the next one, according to slightly differing preliminary news reports.  An official statement was not immediately available.

A spokesman for Mattiello added that the “budget will be finalized in the coming weeks, and there are no firm numbers yet, but the Speaker is committed to addressing the developmental disabilities issue in the budget.”

The chairman of the Senate Finance Committee, Sen. William J. Conley,Jr., D-East Providence and Pawtucket, has taken a firm stand against the $18 million reduction in reimbursements to private providers proposed by Governor Gina Raimondo in January.

During a Senate Finance Committee hearing May 3, Conley framed the budgetary issue in terms of the civil rights of adults with developmental disabilities to have the assistance they need to enjoy services in their communities as spelled out in the Olmstead decision of the U.S. Supreme Court.

And that day for the first time, Rebecca Boss, director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals(BHDDH), acknowledged that governor’s recommended budget for the fiscal year beginning July 1 would not allow the state to continue its compliance efforts with a 2014 federal consent decree based on the Olmstead decision.

For the fiscal year beginning July 1, Raimondo has proposed $250.8 million for developmental disabilities. That figure is $6.1 million less than the bottom line enacted by the General Assembly for the current fiscal year and a total of $21.4 million less than current spending levels.  Raimondo’s budget proposal would raise the current spending limit from $256.9 million to $272.2 million for the fiscal year ending June 30 to cover a cost overrun, treating it as a one-time event.  

In the BHDDH budget request to the governor last fall, Boss asked for a total of $278.8 million for developmental disabilities beginning July 1.

U.S. District Court Judge John J. McConnell, Jr., who presides over implementation of the consent decree, has made it clear over the last six months that he has a keen interest in the funding issue.

At the most court recent hearing April 10, an independent court monitor said he would draft recommendations for a proposed court order to ensure compliance with the consent decree

The monitor, Charles Moseley, was to first consult with the state and the U.S. Department of Justice to see if they could all reach consensus on the recommendations. Moseley’s report to the judge has not yet appeared in the court file.

But McConnell has received a letter from a parent asking him to “stop the governor’s plan to cut $18 million from I/DD (intellectual and developmental disabilities) services.”

Chris Torgovec has a son with autism who is living in a group home and has started to work a few hours a week “so he is doing well there, but I’m afraid of what could happen if these services would go away.

“It would not be a good thing for anyone. I’m sure there are other places to make cuts but not to people that actually need help, “ Torgovec said.

RI Senate Finance, BHDDH To Seek More Funding To Protect Services And Rights Of Adults with DD

By Gina Macris

Governor Gina Raimondo’s proposed $18.4 million cut to developmental disability services for the next fiscal year would not allow Rhode Island to continue its compliance efforts in connection with a 2014 federal consent decree, Rebecca Boss acknowledged for the first time during a budget hearing before the Senate Finance Committee on May 3.  

Boss - RI CApitol tv

Boss - RI CApitol tv

Boss is the highest ranking official in the Raimondo administration responsible for adults with developmental disabilities in her position as the director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).  

Her admission came in response to the finance committee chairman, Sen. William J. Conley, Jr., who laid out a detailed and persistent line of questioning that revealed an authoritative grasp of the issues of the the consent decree and established him as a leading advocate for expanding the developmental disabilities budget.  

Boss said in initial remarks that based on an “updated data analysis of monthly caseloads and more positive revenue trends, we will be advocating for increased funding for BHDDH so Rhode Islanders’ needs are met.”

Conley - RI CAPITOL TV 

Conley - RI CAPITOL TV 

But Conley asked her to revisit a specific question about funding that had first been posed to her by U.S. District Court Judge John J. McConnell, Jr. during a hearing April 10. McConnell asked whether the proposed $18.4 million cut in reimbursements to private providers effective July 1 would affect the state’s ability to move forward with compliance efforts related to the consent decree.

At the time, Boss said BHDDH did not have enough data to give an answer.

Conley said the consent decree “does nothing more, quite frankly, than require the same standards that the U.S. Supreme Court established in 1999.”

The so-called Olmstead decision clarified the integration mandate of the Americans With Disabilities Act, spelling out the rights of all individuals with disabilities to choose services that are part of their communities.    

Nearly 20 years after the Olmstead decision, Rhode Island is “still struggling to meet a constitutional standard of care,” Conley said.

“Four years after the consent decree was entered and after repeated court monitor reports, we still cannot answer the question as to whether or not we are providing sufficient resources, really, to provide justice and dignity to the people with intellectual and developmental disabilities in the state of Rhode Island.”

“While I understand you have to represent the voice of the administration, and everybody expects you to be a loyal soldier and team player, the budget that you are giving us doesn’t do that,” Conley said, addressing Boss.

Otherwise, Boss would have been able to clearly answer the judge that the loss of $18 million would not affect progress on the consent decree and would have been able to spell out how its goals would be achieved with the remaining funds, Conley said.

When Conley asked what the Senate Finance Committee could do to help BHDDH, Boss and the Director of Developmental Disabilities, Kerri Zanchi, both said members could advocate for more flexibility for the department to assign resources.

Boss said she agreed that the department needs more resources but wasn’t sure that the prescriptive nature of the consent decree was the best approach.

But Conley replied said that when the state isn’t meeting the standards, or doesn’t have the data to show its progress – a problem since 2014 – “the default position is prescriptive standards, because they need some kind of measuring stick.”

One measure is whether the “proposed budget would provide the level of services that are constitutionally mandated,” Conley said.

“What’s your answer today?” he asked, bringing the discussion full circle back to the judge’s question.  

Boss said, “With the revised analytics done, we could say today that the budget proposed would not continue the service delivery” in the current fiscal year.  The consent decree requires an increase in commitment during each year of implementation. equired by the consent decree.

While Boss did not offer a figure, Sen. Louis D. DiPalma, D-Middletown, the first vice-chairman of the committee, said developmental disabilities would need about $275 million to $280 million in federal and state funding during the next fiscal year, based on the original budget request the department made to the Governor’s office last fall.

DiPalma presented a chart showing that actual funding for developmental disabilities has lagged behind inflation since July 1, 2011, which marked the introduction of “Project Sustainability,” the current fee-for service reimbursement system that has come under increasing criticism for imposing restrictions on providers – and the state bureaucracy – in implementing the consent decree.

For example, the chart shows that the $239.8 million allocated for developmental disabilities effective July 1, 2010 would be the equivalent of $274.5 million allocated effective July 1, 2018, the start of the next fiscal year, with an adjustment for inflation according to the consumer price index.

Raimondo’s proposal, as it now stands, would allocate only $248.1 million effective July 1, counting only the federal-state Medicaid funding. (Other miscellaneous funds would add slightly more than $2 million to the bottom line.)

The Senate on May 1 gave final approval to a resolution creating a special commission to study the reimbursement system under Project Sustainability, including the use of a standardized assessment tool keyed to a funding formula that has never been disclosed. The commission has until March 1, 2019 to issue its report.

Sen. Walter S. Felag, Jr., D-Warren, Bristol and Tiverton, said he favors fully funding developmental disabilities.

He said it seems that in the last eight to ten years, there has been “tremendous pressure” to decrease these expenditures,” with particular challenges on residential costs from 2013 to 2017 as BHDDH has tried to move people out of group homes to less expensive shared living arrangements.  He questioned whether it has been all worthwhile.

Boss said there have been investments in developmental disabilities in that time, and Conley remarked that Boss and her staff are doing “tremendous work” with the resources they do have.

Beth Upham put a parent’s perspective on services. Her daughter, Stacy, a resident of a group home with an active calendar, “has a life we never could have given her,” she said.

She said she has met with Governor Raimondo, who has “promised she would support this community.”

But if the governor’s existing budget proposal is enacted, Upham said, “every person in the system will suffer. They will be sicker. There will be more hospitalizations. My daughter, my baby girl, will suffer,” Upham said.

“We have been fighting this system ever since she turned 21,” Upham said.

She asked, “why, for the last 15 years, has this community been targeted for cuts?”

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. 

DiPalma: RI Must Invest In Transformation of DD Services To Protect Most Vulnerable

By Louis P. DiPalma

DiPalma headshot

The Rhode Island Division of Developmental Disabilities (DDD) in the Department of Behavioral Health, Developmental Disabilities, and Hospitals (BHDDH) is undergoing a significant transformation, much like Department of Children, Youth and Families. This transformation requires financial investment to succeed, not the proposed cuts.

As legislators, we must work to ensure we invest in the most vulnerable populations in our state, including the more than 4,000 individuals living with intellectual/ developmental disabilities (I/DD) who are served by BHDDH-DDD.

From a programs perspective, there are at least two critical elements of transformation the agency is undertaking. The first element is required by the 10-year 2014 consent decree settlement with the Department of Justice for violation of the civil rights of individuals with I/DD. The state, currently in its fourth year of transformation, is now under a court order.

The key focus of this transformational initiative is to transition individuals with I/DD from working in sheltered workshops to integrated employment and community-based programming. And, while the state is making progress in many areas, there is still a need for increased focus and attention.

When all is said and done, in 2024, successfully achieving the goals of the Consent Decree will require approximately $25 million in annual state and federal funding. The Department of Justice is closely monitoring our investments and commitment to reforming our practices toward full inclusion of individuals with disabilities in local communities and businesses. We must invest and commit to the ideals of inclusion for individuals with I/DD.

Another critical element of transformation is the transition of individuals with I/DD from living in group homes to alternative living arrangements, such as shared living arrangements. This transformational, voluntary program, when fully implemented, will require less funding than what is currently needed to support the same individuals in group homes.

The state is making progress in ensuring new DD clients who enter the system have the opportunity to live independently with supports, though challenges remain. During this multi-year transition, the agency will be required to sustain and maintain both systems, necessitating additional investment for multiple years, including in additional personnel. Without it, the transition will not be successful, individuals will not be in the most appropriate settings, and the savings would be unrealized.

Gov. Gina Raimondo has committed to new leadership for BHDDH and DDD to lead this transformation, and progress is being made. However, we are at a point in the transformation that requires investment in the division and the services they fund.

A review of the proposed budgets for the BHDDH-DDD, shows a revised current year budget, including general revenue and federal funding, of $269 million and the proposed fiscal year 2019 budget of $248 million, a reduction of $21 million.

A $21 million reduction in funding at a time when investments are needed. As a legislator, I appreciate the challenge the governor is confronting, especially in light of our structural deficit. Any increases in revenues should be invested in Rhode Island’s most vulnerable citizens, including individuals living with I/DD. It is the right thing to do, and it will help continue progress toward system transformation and compliance with the consent decree.

President Franklin D. Roosevelt said it best: “The test of our progress is not whether we add more to the abundance of those who have much; it is whether we provide enough for those who have little.”

Louis P. DiPalma, a Rhode Island state senator, is a Democrat serving Newport, Middletown, Little Compton, and Tiverton

RI Consent Decree Monitor Will Draw Up Proposed Judicial Order to Ensure Adequate State Funding

By Gina Macris

Judge John J. McConnell, Jr. of U.S. District Court signaled during a hearing April 10 that he is prepared to act to ensure that Rhode Island complies with a requirement of a 2014 consent decree that calls for “timely” funding of integrated services for adults with developmental disabilities.

But it is not yet clear what judicial action might look like in relation to the language of the consent decree, which does not quantify compliance in terms of dollars and cents.

Governor Gina Raimondo has proposed a developmental disabilities budget for the fiscal year beginning July 1 that would cut $18.4 million in federal and state Medicaid funds from current spending limits on privately-operated developmental disability services for adults and another $3 million from a state-operated network of group homes.  

That reduction comes on the heels of an already-underfunded system of services and would “permanently derail compliance with the consent decree,” said Jeffrey Kasle, lawyer for nine service providers, who spoke during the informal hearing, or “status conference” at the invitation of an independent court monitor.

The monitor, Charles Moseley, said he would  draw up a list of proposed funding-related actions for the judge to consider. Marc DeSisto, the state’s lawyer, and Victoria Thomas, who represented the U.S. Department of Justice, each said they wanted to review the proposal before the judge takes action.

If there is no consensus, McConnell said, he will hold a formal hearing and take evidence before issuing an order.

Since 2016, when he began reviewing the consent decree, McConnell has tried to make information about compliance accessible to the public, insisting that periodic conferences be held in open court and stressing the informality of the proceedings.

The review on April 10 was no exception, as the lawyers and state officials spoke from a podium facing the audience in the towering, mahogany-paneled courtroom, so spectators could better hear the proceedings. McConnell, wearing business clothes instead of his judicial robes, sat near the court stenographer just inside a circular bar that normally separates litigants from the public. 

The informal atmosphere, however, belied the gravity of the funding issue, which McConnell called the “elephant in the room,” and its implications for judicial action.

The monitor, Moseley, and lawyers for the DOJ and the providers all concurred in their concerns over funding. 

Officials of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) said they needed better data to make a case for a bigger budget and noted that $116 million more will have been spent on developmental disabilities during the Raimondo administration,  between 2015 and 2019, than was spent from 2010 to 2014.

It was in 2014 that Rhode Island was found in violation of the integration mandate of the Americans With Disabilities Act (ADA) by relying on a segregated system of work and non-work activities that could survive on significantly less staffing that is mandated today through the consent decree.

Kasle, the providers’ lawyer, noted that the current administration at BHDDH, led by department director Rebecca Boss and the director of the Division of Developmental Disabilities, Kerri Zanchi, have shown a commitment to collaborating with providers that is the “best in a decade.”

But much of the state’s current compliance with the consent decree occurs because the private providers are doing the work, Kasle said.

“If all they can do is keep people safe,” he said, consent decree compliance will “fall apart.”

A decade ago, direct care workers made $3 to $5 more an hour than minimum wage, Kasle said. The legislative efforts to raise wages in the last two years, which added $11 million to the budget, are appreciated but they have just kept the workers on a par with the minimum wage, he said

For providers,  who can pay only $11 or $12 an hour, “it’s almost impossible to fill jobs,” Kasle said.

And if the state is to integrate individuals with developmental disabilities in the community, allowing them a choice in how their programming will be achieved, the state will need more direct care workers, he said.

Victoria Thomas, a lawyer for the DOJ, said that on the most recent site visit in February, she and her colleagues spoke to a provider who had had to lay off several middle managers because of budgetary constraints.

Employees have seen their salaries cut; paid vacation was eliminated, and workers have had to increase their contributions to health care, Thomas said.

The judge, meanwhile, asked Boss, the BHDDH director, whether the state can comply with the consent decree if Governor Raimondo’s budget for the next fiscal year is enacted without any changes.

Boss said she didn’t know the answer. Nor could she say whether BHDDH could comply with the consent decree if no cuts were made and current spending was maintained. 

Boss said BHDDH is “committed to implementing the consent decree. We want every individual to live in the community as they wish.”

Last fall, Boss submitted her department's budget request for the fiscal year beginning July 1 far higher than what Governor Raimondo later proposed to the legislature.  Boss asked for a total of $278.8 million in federal and state funds, or $28 million more than what Raimondo ultimately submitted to the General Assembly.

In a cover letter, Boss wrote at the time that “any further reductions could have further significant repercussions financially and operationally for the department further impacting some of the most vulnerable citizens within our state.”

For the fiscal year beginning July 1, Raimondo has proposed $250.8 million for developmental disabilities, which is $6.1 million less than the bottom line enacted by the General Assembly for the current fiscal year.

The proposal of $250.8 million is also $21.4 million less than current spending levels. Because of current cost overruns, Raimondo has proposed adding $15.3 million to the existing budget of $256.9 million, for a total of $272.2 million, to fill the budget gap through the end of the fiscal year June 30.

RI DD Providers Seek To Present Evidence Of Underfunding In Federal Consent Decree Case

By Gina Macris

Chronic underfunding already has “significantly crippled the developmental disability system” in Rhode Island, and now Governor Gina Raimondo’s proposed budget threatens to further derail reform efforts,  according to eight private providers of services to people with disabilities.

The providers’ statements appear in an April 6 filing with U.S. District Court in which they seek to intervene and present evidence in the court’s ongoing oversight of the 2014 consent decree designed to correct the state’s violations of the Americans With Disabilities Act (ADA).

Their warning of a potential retrenchment in services mirrors a separate statement of the court’s official independent monitor, Charles Moseley, also filed April 6. In a quarterly report, Moseley says that Raimondo’s $21.4 million proposed reduction would “significantly impact” the state’s efforts to comply with the consent decree.

In filing a formal request to intervene in the ongoing consent decree case, the providers’ lawyer, Jeffrey Kasle, asks to address Judge John J. McConnell Jr. at the next consent decree hearing Tuesday, April 10.

The providers – Community Living of Rhode Island, AccessPoint RI, Gateways To Change, Seven Hills, Looking Upwards, The Frank Olean Center, the Fogarty Center, West Bay Residential Services, and United Cerebral Palsy of Rhode Island – say they won’t be able to continue implementing the consent decree’s mandate for integration of services in the community if the General Assembly adopts Raimondo’s spending plan.

The monitor, Moseley, also said that a previously-announced $3 million reduction in federal funding to the state Office of Rehabilitation Services (ORS) doesn’t appear to affect 30 individuals protected by the consent decree whose names appear on an ORS waiting list for services, because they are getting fast-tracked for similar help at the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Those are the same supported employment services the eight providers say are in peril should Raimondo’s proposed budget be approved by the General Assembly.

The monitor, meanwhile, acknowledged that the $3 million reduction in available funds at ORS, combined with a $21.4 million decrease in funding from current levels, would “seriously erode” the state’s compliance efforts if the budget is enacted as proposed. 

The $21.4 million Moseley cited is the difference between Raimondo’s proposed amended budget for the current fiscal year - $272.2 million in federal and state funding - and her proposed spending limit for the next budget - $250.8 million.

The next budget’s proposed $250.8 million is also $6.1 million less than the $256.9 million the General Assembly has already enacted for the budget cycle ending June 30. After cost-saving measures at BHDDH are taken into account, developmental disabilities is still running a deficit of $15.3 million, which Raimondo would cover with a one-time boost in funds through June 30.

That one-time infusion does not acknowledge the structural underfunding of developmental disability services, according to Tom Kane, CEO of AccessPoint RI, one of the eight agencies that seek to participate in the consent decree case. Kane testified at a recent budget hearing in the Rhode Island House.

Consent Decree Requires Adequate Funding

In his report, Moseley said the Consent Decree requires the state to “timely fund” the services and supports necessary for compliance. He promised to closely follow the General Assembly budgeting process and to keep the judge and the U.S. Department of Justice informed.

Moseley also recalled that Rebecca Boss, the BHDDH director, offered assurances at a public forum Feb. 26 that BHDDH and the Executive Office of Health and Human Services are “committed to ensuring that funding for DD services would meet the needs of the individuals receiving support and that the State has no intention to cut services or reduce rates to service providers.”

“These assurances will be closely monitored in the weeks ahead,” Moseley wrote.

As in previous reports, Moseley documented the extent to which the state has met numerical targets for supported employment and related activities.

But his April 6 report also reflects a sharpened scrutiny of systemic challenges in the overall goal of the consent decree to transform Rhode Island’s services from an overreliance on sheltered workshops and segregated care to an integrated model based in the community that would comply with the ADA.

Some of the issues highlighted by the monitor can be linked to a lack of funding, or difficulties providers have in accessing the money they have been authorized to spend. They include:

  • providers’ wariness about taking financial risks to provide the extra staff necessary to integrate clients in the community for non-work activities
  • lagging efforts to develop a critically-needed quality improvement unit within the Division of Developmental Disabilities (DDD) to ensure that provider services meet standards of the consent decree
  • a lack of reliable data on providers’ ability – or inability - to serve new clients.

Report Tracks Employment

Among the majority of the consent decree population that was already receiving some sort of service when the consent decree was signed, the state has consistently met or exceeded relatively modest employment targets, although the consent decree requires the pace of job placements to pick up in the future.

Job placements have lagged for young adults – those seeking BHDDH-funded services for the first time – even though they have tended to have a more integrated education than prior generations and might be perceived as better prepared than their predecessors to take advantage of employment opportunities in the community.

The court has approved a revised schedule for the state to achieve employment targets for the so-called “youth exit” population - those who left high school between 2013 and 2016 – and Moseley said the state has met the first goal of the new compliance timeline.

He included a table, below,  which shows the cumulative number job placements the state has achieved among three categories of the consent decree population. 

Monitor's report, U.S. District Court File 

Monitor's report, U.S. District Court File 

Besides Youth Exit, the categories include “Day Target” for those based at segregated facilities during the day and “Sheltered Workshop” for those who worked for sub-minimum wage at repetitive tasks. 

The entire consent decree population, including teenagers, numbers just over 4,000 individuals,  Moseley said, noting that it fluctuates from quarter to quarter. For a variety of reasons, the number that must be offered supported employment in the community is 2,418, Moseley said. Individuals have the right to refuse.

With the implementation in 2017 of a supported employment program that includes performance payments for service providers, BHDDH has made notable gains in expanding job placements, Moseley said.

His report included links to videos documenting the impact of meaningful work on adults facing intellectual challenges. https://vimeo.com/81024947 and https://www.youtube.com/watch?v=PBcfHqLB2QU&feature=youtu.be

Off the Job, Community Integration Lags

When it comes to integrating adults with developmental disabilities in the community for non-work activities – another main goal of the consent decree – service providers generally have a long way to go.

Moseley described a common scenario:

“Typically, individuals take part in a relatively narrow range of activities that are selected from pre-set lists or menus that vary by the day, week or month. Although these activities take place in the community in the presence of individuals without disabilities, they generally are non-participatory; people attend a community event, visit the zoo, walk through or have lunch in a park, go to a restaurant for coffee, spend time in the local library or in stores in the mall.

“These visits may improve individuals’ knowledge of community options, but they do not expand the person’s social network or engage the individual in a meaningful and productive involvement with people without disabilities.” disabilities,” the report said.

Moseley said it is important to note that several agencies do provide “productive and integrated day supports that do meet Consent Decree requirements.”

According to Moseley’s report, these providers tend to “offer day services only in integrated settings and have taken steps to ensure that individuals receiving support are fully engaged in decisions regarding the activities that they will participate in during the day.”

Moseley continued: “Some individuals are living self-determined lives and, with support from staff when needed, are volunteering in local agencies or joining community organizations. Many engage in both individual and group activities of their own choosing over the course of the week and are supported in determining what it is that they do every day and what role the service provider will play in their lives.”

The monitor said that most agencies need concentrated training, technical assistance and oversight, just as they have received for supported employment. Funding is also an issue, he said.

Funding authorizations are issued quarterly on the basis of a standardized assessment of need that may not match up with a particular person’s preferences, an important distinction since personal choice is a fundamental principle of the consent decree.

Several providers have reported that they hesitate to deviate from facility-based care because of billing and reimbursement rules that make it virtually impossible for them to estimate future expenditures and revenues. Staffing group activities in one place is inherently less costly than sending direct care workers into the community with individuals or small groups of clients.

Providers must bill for daytime services in 15-minute increments. If clients do not attend a program on any given day or portion of the day, the providers cannot be reimbursed, even though they must still pay the same labor costs.

Providers have been saying for years that they want an annual, predictable method of funding so they can manage their costs over time.

Moseley called on BHDDH to analyze the current funding model with an eye toward changes that would release providers from regulatory restrictions that hinder meaningful community integration for non-work activities, in the same way that funding methods were adjusted for the performance-based supported employment program.  Meanwhile, BHDDH recently solicited opinions from service providers on how to shape such an initiative, although the project is still at an early stage.

Moseley recommended that BHDDH identify and publicize the promising practices of local provider agencies that do integration well and that it start a pilot program of integrated non-work services for those who are served in the performance-based supported employment program.

What Happens When Families Request Services?  

In broad terms, the consent decree requires the state to ensure that it “supports and maintains sufficient capacity,” through some three dozen licensed provider agencies, to deliver supported employment and integrated non-work activities, in accordance with standards spelled out in the agreement.

While the state has made some progress addressing certain policy and practices within BHDDH as they affect providers, Moseley said, it has not developed a system for regularly collecting data on providers’ ability to respond to requests from consumers. 

At the same time, Moseley has had plenty of reports from families and advocates. He said:

“Many provider agencies turn down individuals’ applications for services or are unable to respond in a timely manner, citing barriers related to insufficient funding, inability to serve individuals with complex or challenging conditions, workforce shortages – inability of the provider agency to train and maintain needed staff – internal limitations on the size of the organization or the number of individuals served, or other reasons.”

In general, providers have said they are loathe to expand services because they are just taking on more operating debt.

While BHDDH has gathered information from its own social workers on providers’ responses to client inquiries, Moseley said that for a number of legitimate reasons, the data is largely incomplete and unreliable.

In the past, BHDDH has discouraged providers from keeping contact information for those individuals they turn away out of concern that the names might be perceived as a waiting list, according to sources knowledgeable about the process.

Moseley directed the DDD to work with providers to develop a system for gathering data for a quarterly report on the number of referrals received, those accepted and those refused and the reasons for the refusals.

BHDDH Needs To Monitor Program Quality

Funding issues also figure in halting efforts of BHDDH to create a quality improvement unit that would ensure high program standards in accordance with the consent decree. BHDDH has an investigatory arm designed to respond only to complaints of abuse or neglect of its clients.

Moseley said insufficient staffing is a “major barrier” in developing a quality improvement unit. 

DDD was to have a minimum of two staffers working fulltime on quality improvement this year but has dedicated only one person to that job, Mosely said, with part-time assistance from two others loaned from elsewhere in BHDDH and the Executive Office of Human Services. In all DDD has pulled together 1.75 full time equivalent positions to work on quality improvement. 

In addition, DDD submitted a plan for developing quality improvement functions that does not call for a feasibility study on an actual quality improvement unit until June 30, 2019. Moseley said the DDD must have the study completed by Sept. 30.

Quality improvement is of critical importance in implementing the consent decree, Moseley said, explaining that the work and non-work program of each of 38 providers must be reviewed once every two years to ensure the services meet consent decree standards. That schedule requires a minimum of least four fulltime staff, he said. The addition of staff to the state payroll requires approval from the Department of Administration.

Moseley said he “strongly recommended” BHDDH take immediate  to increase quality improvement staffing to that level. He also asked DDD and ORS to take numerous other steps to document quality improvement activities on a regular basis.

The U.S. District Court hearing April 10 is scheduled for 2 p.m. in Courtroom 1 on the third floor of the federal court building on Kennedy Plaza in Providence.

Click to read the monitor's full report. 

Click to read the motion to intervene.

RI DD Advocates Warn Of 'Massive Retrenchment' From Proposed $21.4 Million Spending Reduction

                                                                                                                                                                                                                                                                           All Photos by Anne Peters

                                                                                                                                                                                                                                                                           All Photos by Anne Peters

Donna Martin, executive director of the Community Provider Network of Rhode Island,  speaks during the Day Of Action, sponsored by the provider network. Standing, l to r, are Rep. Deborah Ruggiero, (D-Jamestown and Middletown); Rep. Dennis M. Canario, (D-Portsmouth, Little Compton and Tiverton), and Rep. Teresa A. Tanzi, (D-Narragansett and South Kingstown.  Seated on the steps below the State House Rotunda are advocates representing the service provider Spurwink RI. 

By Gina Macris

Rhode Island would see a “massive retrenchment” in services for adults with developmental disabilities if Governor Gina Raimondo’s proposed budget is enacted for the next fiscal year, a spokeswoman for providers told members of the House Finance Committee at a hearing March 29.

Pam Goes 

Pam Goes 

In human terms, Raimondo’s plan to cut $21.4 million from current spending levels would diminish the quality of life for some 4,000 individuals whose care is already undercut by low wages and high turnover among caregivers, said Pam Goes of Warwick, who has two sons with developmental disabilities, including one who cannot express his needs verbally. 

Goes delivered the same message at a “Day of Action” in commemoration of March as Developmental Disability Awareness Month under the State House Rotunda in mid-afternoon as scores of adults with disabilities and their supporters lined the steps leading to the House and Senate.  

State Sen. Louis DiPalma, D-Middletown, told the crowd that “people with developmental disabilities have the ability to lead a full and prosperous life. That’s why I’m here.'

Rep. Teresa Tanzi, D-Narraganset and South Kingstown, said that for the compassionate work they do, the wages of direct care workers are an “injustice.”

Tanzi, who chairs the Human Services Subcommitte of the House Finance Committee, presided over the budget hearing later in the afternoon.

Of the overall $21.4 million reduction from current spending levels in the next fiscal year, $18.4 million would come from private the agencies that provide most of the services and $3 million would be taken from a state-operated system of group homes.

Martin, executive director of the Community Provider Network of Rhode Island (CPNRI), did not mince words when she addressed Tanzi and other members of the House Finance Subcommittee.

She said “there is no way” that service providers will be able continue efforts to comply with new federal Medicaid regulations requiring integrated, community-based services and a 2014 federal consent decree that focuses on competitive employment for adults with developmental disabilities.

Needed Changes Are "Not Going To Happen" 

Compliance with the 2014 consent decree and the new Medicaid regulations, called the Home and Community Based Final Rule, depends on system-wide changes in the manner of care, and “that’s not going to happen” with an $18 million cut to private service providers, Martin said.

Instead, there will be a “tremendous reduction” in services, she said, with agencies forced to prioritize the health and safety individuals in their care. Employment –related services and the services necessary to provide community integration will suffer if the agencies must absorb an $18 million, Martin said. Workers’ hours and wages – which hover slightly above minimum wage – would be cut.

David Reiss, CEO of the Fogarty Center, the largest non-profit service provider in the state, said the agency simply cannot survive if the state imposes the $18.4 million reduction across the board. It represents about a 7 percent cut in spending. 

Reiss said he has closed five group homes in the past year, not because of a lack of demand but because he couldn’t find enough workers to staff them. Staff turnover is about 40 percent, he said. 

The starting wage at the Fogarty Center is $10.50 an hour, he said. Although the General Assembly has raised the pay for direct care workers slightly in the past two years, the minimum wage also has increased. It is now $10.10 and is scheduled to go up again next January to $10.50 an hour. Massachusetts has an $11.00 minimum wage and has agreed to pay direct care workers a minimum of $15 an hour beginning in July.

Raimondo’s budget includes no money for raising the wages of direct care workers this year, although a bill in the legislature would link increases in the minimum wage to raises for front-line staff, according to Martin, the CPNRI director.

High Staff Turnover Worries Parents

Pam Goes, the Warwick mother, discussed the impact of the high staff turnover on her non-verbal son.

“We feel like we are constantly starting over,” she said. Her son Paul needs to trust his caregiver, and that trust comes only with time and continuity of high quality care.

“It’s a difficult job for them to be on top of his moods ,” she said. “You need to get to know him,” she said. Paul will often test new staff to see how much he can get away with, she said, and he can become aggressive.

“I worry that there are so many people in and out of his life,” she said. “I worry that his communication is so limited. I especially worry about what happens when I’m gone,” she said.

“I want to advocate for a sustainable system where people live a good life,” she said. “It’s a lot of stress knowing the situation could become more untenable.”

About four thousand people receive services, she said, and “every family has a story like mine.”

Tom Kane, the CEO of AccessPoint Rhode Island, said Goes reminded him of the best compliment his agency ever received: “The work you did for our son allowed us to be the family we wanted to be."

A Call For More Funding

The budget is “about priorities. It’s about morality, and it’s about people” he said. “It should be about people.”

Kane called on the legislators to approve a proposed $15.3 million budget increase to cover cost overruns in the current fiscal year, as Raimondo has proposed, and then to add another $15 million in the budget cycle beginning July 1 to deal with a structural deficit and allow some growth.

Raimondo’s budget proposal does not acknowledge the structural deficit, he said. Instead her plan only temporarily grants additional funding, only to take it away in the next fiscal year.

The General Assembly approved total spending of $256.9 million for the current fiscal year. Raiimondo’s proposal would increase that figure to to $272.2 million. But in the fiscal year beginning July 1, her bottom line would drop to  $250.8 million. That figure is  $6.1 million less than the enacted budget and $21.4 million less than the temporary budget expansion Raimondo has proposed through June 30.

Kane presented figures which showed Rhode Island spends significantly less on adults with developmental disabilities than neighboring Massachusetts and Rhode Island.

The State of the States in Developmental Disabilities, a research project sponsored by the University of Colorado, tracks residential costs for adults with intellectual challenges. In 2015, the latest year for which data is available, the national average for residents of institutions with 16 or more beds was $256, 400 per person.

  • Massachusetts spent $287,434 per person
  • Connecticut spent $403,496
  • Rhode Island spent nothing in that category. All those who would be in institutions in Massachusetts or Connecticut live in group homes in Rhode Island, Kane pointed out.

The average cost for group homes with six or fewer residents nationwide was $129,233 in 2015, according to the State of the States.

  • Massachusetts spent $170,682 per person
  • Connecticut spent $172,067 per person
  • Rhode Island spent $114,973 per person                                       

Kane said the average per-person cost in Rhode Island is skewed upward by the state-operated system of group homes. According to the House Fiscal Office, the average per-capita cost for 139 residents of the state operated system is $207,251.

In the privately-operated group homes, however, the state spends about $60,000 a year per person, Kane said. Roughly 1200 individuals live in houses run by private agencies like Access Point RI  and the Fogarty Center.

Controversy Continues over Assessment

Kane turned to a discussion of the Supports Intensity Scale, a controversial assessment methodology that uses lengthy interviews to determine the level of services needed by persons with developmental disabilities on a case-by-case basis. It was introduced in 2011, ostensibly to correct “special considerations” for individual clients that state officials said posed a problem because they were driving up costs, Kane said. 

Ironically, he said, the assessment has prompted many more appeals of individual funding than the number of “special considerations” that had been granted previously.

Some people see the assessment as a problem since it was revised in November, 2016, because it has it has led to larger awards, Kane said.  A House fiscal analysis says the new assessment has added $17 million to developmental disability costs in the first 12 months it was used. 

Kane said service providers believe that the results of the original assessment were “manipulated to back into a budget that didn’t accurately reflect the needs of people.”  

The revised assessment, the Supports Intensity Scale – A, is being used “far more appropriately now,” he said.

The House Fiscal Advisor, Linda Haley, noted a “moratorium” in the use of the SIS-A. The director of the agency responsible for developmental disabilities, Rebecca Boss, explained that it was temporary, to allow officials to review their implementation of the revised assessment. 

A total of 46 errors in funding were corrected (see related article) and the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals continues to use the assessment for new entrants and for regularly-scheduled re-evaluations of clients. Boss said.

If an appeal includes documentation of changes in a person’s medical or behavioral needs that are likely to be long term, perhaps as part of the aging process, a client will receive a re-assessment with the SIS-A ahead of schedule, added Kerri Zanchi, Director of the Division of Developmental Disabilities.

Kevin Nerney, a spokesman for the Rhode Island Developmental Disabilities Council, discussed several initiatives that are intended to both improve services in compliance with federal law and cut costs over the long term.

But Rhode Island is not there yet, he said.

“We don’t want to destroy one system (of services) before creating a new one,” Nerney said. “We don’t want to leave people behind based on an arbitrary fiscal goal rather than the needs of people.”

He said he knows that some eligible individuals are unable to find services that fit their needs, alluding to an increase in the number of individuals who are receiving only case management  during the last couple of years. That figure jumped from 451 in 2016 to 643 this year.

“On paper, it may look like savings” for the state, Nerney said, but some of those families “are in crisis.”