'Our Lives Turned Upside Down' When Daughter Entered RI Adult DD System, Mother Says

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Louis DiPalma, Rebecca Boss, and Kerri Zanchi watch A. Anthony Antosh of Rhode Island College present consumer and family perspectives on the state’s services for adults with developmental disabilities Photo by Anne Peters

By Gina Macris

A Rhode Island Senate study commission spent nearly two hours Dec. 12 laying out a catalog of strengths and weaknesses in Rhode Island’s system for helping people with developmental disabilities.

But in the end, the personal stories of two mothers, Amy Kelly of Smithfield and Martha Costa of Portsmouth, focused the commission’s attention on the crises now unfolding for at least several families who are at their wits end.

In the catalogue, their experiences come under “residential services-need for specialized medical/behavioral residential models.”

For Amy Kelly, that means that every single service provider in Rhode Island – about three dozen - has turned away her 21 year-old daughter, who is autistic, has behavioral problems, and functions in many ways as a kindergartener.

“So now what do I do?” Kelly asked in a letter to the commission chairman, Sen. Louis DiPalma, D-Middletown. Kelly is a widow, and works fulltime. Her daughter, Kayla, was asked to leave the Trudeau Center in Warwick because of injuries to staff.

For a month now, Kayla has been at home all the time and her problematic behaviors have intensified, Kelly wrote. “She is out of her routine, asking for “friends,” “yellow bus,” “trip,” and other favorite things and experiences that she misses..

Kelly has been forced to choose “self-directed” services, meaning that she must find her own workers,“which is pretty much impossible,” she wrote to DiPalma.

And the Home Based Therapeutic Services that helped Kayla outside of school hours while she was still in special education are no longer available.

“I cannot believe there are no programs in RI for families in this situation!” Kelly wrote. “When my daughter turned 21 in May everything in our lives turned upside down.”

Martha Costa * courtesy of Capitol TV

Martha Costa * courtesy of Capitol TV

Martha Costa agreed. She attended the Commission hearing at the State House on behalf of her own family and five others in Portsmouth who have become friends as their children have faced behavioral challenges growing up and have aged out of the school system into purview of the state Division of Developmental Disabilities (DDD).

As the mother of a 22 year-old man on the autism spectrum, she said her experience has been that once young people with complex needs turn 21, “there is really no place for them to go.”

The family might be told to go to a hospital, but with the exception of Butler Hospital in Providence, a mental health facility, “the hospital is horrible, because it’s just more trauma going there.”

The 21 year-old daughter of a friend of Costa’s had meltowns after her mother – her primary caregiver and the one who organized her services - died in September. The woman’s daughter, who has multiple disabilities, was hospitalized because there was “nowhere for her to go,” Costa said. The young woman was “restrained, medically and physically. It’s heartbreaking,” Costa said.

“It’s lucky you have good parents who are helping these kids, but you know, we’re all getting older and we’re not going to be able to,” she said. The aging of parents, who are often primary care givers, is a broad concern among families, according to survey results.

“There are some kids who don’t have that parent support and they’re on the street,” Costa said. “That’s sad, when they can be a very productive part of our community.”

Kerri Zanchi, the state’s Director of Developmental Disabilities, thanked Costa for coming forward.

One of the biggest challenges in residential services, Zanchi said, is a dearth of specialized homes for individuals with behavioral and other complex needs, as well as a lack of therapists and other clinicians to give them the proper attention.

“There’s a huge need coming” as teenagers with complex disabilities leave schools, she said. “We need to know what that need is and we need to start working on it lot earlier than when they turn 21 and come into our system.”

Zanchi referred to the division’s Eligibility by 17 policy, which aims to give families, schools, and the adult system plenty of time to plan a smooth transition.

In the catalogue, one of the “challenges” the state officials listed in implementing the Eligibility by 17 policy is “resource and service difference for transitioning youth vs adult services.” In the summary that family and consumer representatives submitted, they commented that “transition from high school is a ‘nightmare.“

Zanchi continued her response to Costa. “We certainly recognize every day the crises we have to manage” in order to support the individuals involved and to try to grow the system’s capacity, she said.

And there are committed providers who are willing to help the state, but who also want to do that with the right staffing that will keep all individuals safe, Zanchi said. “We are all hands on deck. I know it probably doesn’t feel like enough,” she said.

Costa agreed. “ I understand what you’ve been doing and I know that everyone has been working hard . Still, it’s not enough,” she said.

Gloria Quinn, executive director of West Bay Residential Services, said her agency works very well with the state as a partner in exceptional situations, but it is extremely difficult as long as there there is a paucity of established expertise in the community that is accessible to the developmental disabilities providers.

“Very often we are creating something new, which takes an enormous amount of time,” Quinn said, and the funding is not enough. Most importantly, when the agency helps someone with increased needs it runs the risk of jeopardizing supports for other people, particularly in a residential setting, she said.

Peter Quattromani, President and CEO of United Cerebral Palsy Rhode Island, pointed to the low wages for direct care staff that frustrate all involved; those who love the work but can’t pay the bills, employers who can’t fill jobs, and consumers and families who can’t find suitable services.

“It’s an incredibly difficult job” , he said, and attracting staff is likewise very difficult, given the low wages.

Commission member Kelly Donovan, who herself receives services from DDD, had sparked the conversation by wondering aloud why those with serious behavioral problems have difficulty finding appropriate support.

She said she agreed with Quattromani and Costa, and she added another factor that she believes contributes to the problem: a societal stigma against those with a broad range of mental illnesses who exhibit aggressive behavior.

During the last month, commission members, representing the executive branch of government, private providers, and consumers and their families, were asked to complete a survey cataloging the strengths and weaknesses of the existing Medicaid fee-for-service system, called Project Sustainability.

The commission plans to use the results of the survey, named the “Current State Assessment,” to seek advice from outside experts and further the group’s deliberations in the future, according to a statement issued at DiPalma’s behest.

Directly or indirectly, a lack of adequate funding in various contexts permeated three summaries of the survey results, each one presented by a representative of each of the three segments of the commission. Transportation, for example, has become a bigger problem now that there is a greater emphasis on community-based services, which require more than the two daily trips usually allowed by individual funding authorizations. Families also cited difficulties of non-English speakers in getting information and services.

But Rebecca Boss, director of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, also said the developmental disabilities budget has increased significantly since 2015, and listed advances made in the last two years, including:

  • $6.8 million for supported employment

  • two annual wage increases for direct care workers (The average hourly pay for front-line workers is $11.36 an hour)

  • the acquisition of a modern data management system

  • an increase in staff for quality management, implementation of a federal civil rights consent decree and for Medicaid-mandated Home and Community Based Services, as well as assistance in maximizing the existing budget.

She described the funding needs of the system as “dynamic.”

“We are engaging in discussions with our partners about what those needs are,” Boss said. “Governor (Gina) Raimondo has demonstrated a willingness to look at the system and make adjustments in the budget as we go along. So this is the process that we’re currently working on and engaging in those conversations on a regular basis.”

Raimondo is to present adjustments for the current budget, as well as her proposal for the next fiscal cycle, during the third week of January.

Christopher Semonelli, a commission member and the father of a teenager with complex needs, commented on the origins of Project Sustainability, which seemed to him like system “in a death spiral, and there was basically a feeding frenzy as to how to continue the system; how to go after the available funds.”

“I don’t think the legislative base should be blamed” for cutbacks that launched Project Sustainability in 2011, “because there was a lack of advocacy, “he said. “Strong advocacy could have prevented that from happening. That is huge and needs to be built going forward.”

DiPalma had the last word. Semonelli “made a great point about advocacy, but he shouldn’t let the General Assembly off the hook,” DiPalma said. “This is where the buck stops.”

Read the summaries presented at the meeting. For the state’s assessment, click here. For consumer and advocates’ comments, click here. For service providers’ comments, click here.

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

By Gina Macris

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

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

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

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

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

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

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


No Wage Hikes In BHDDH Budget Request

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

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

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

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

Federal Officials Watching Budget Process

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

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

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

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

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

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

Boss Details The Current Problem

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

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

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

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

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

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

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

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

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

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

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

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

Savings anticipated in State-Run Group Homes

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

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

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

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

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

RI Consent Decree Judge Wants To Sharpen Focus On DD Services That Encourage Integration

By Gina Macris

For nearly three years, the U.S. District Court in Rhode Island has monitored the state’s progress in implementing a federal civil rights consent decree that seeks to integrate adults facing intellectual or developmental challenges with their communities, detailing the progress made and work yet to be done.

With the 2014 consent decree nearing the middle of its 10-year run, and an earlier, more limited companion agreement designed to expire in July, 2020, Judge John J. McConnell, Jr. has asked participants to come to court next time with a different approach.

In a hearing Oct.30, McConnell asked an independent court monitor, lawyers for the U.S. Department of Justice and state officials to come to court next time with a focus on the areas of greatest concern and to be prepared with recommendations for what the Court can do other than monitor developments.

On Oct. 30, he boiled down the core issues into two parts.

  • Each person protected by the consent decree should have a thoughtful long-range plan for a career that reflects his or her unique needs, preferences and goals.

  • Actual services funded by the state should fit with the goals of the individualized career development plan.

To be sure, McConnell praised the “tremendous progress” made by the state, including the closure earlier this year of the last sheltered workshop. He also heard about increases in supported employment, the growth of a quality improvement unit aimed at assuring all services meet high standards, and cooperation among state officials and private providers. Providers have said in recent months that their working relationship with state officials is better than it has been in many years.

At the same time, problems persist in finding jobs for young adults and in providing high quality personalized support services for non-work activities that typically take up the majority of individuals’ time, according to the testimony McConnell heard.

Continuing concerns about inadequate funding surfaced during the Oct. 30 hearing when the independent monitor, Charles Moseley, described a visit he and another consultant had with state officials and 16 providers in early August.

In a report filed with the Court hours before the hearing, Moseley said “significant numbers” of the providers indicated that they continue to run deficits in key areas and that funding allocations for individual services are insufficient to cover the costs of the services that must be provided.

Among major barriers to providing services, 94 percent cited transportation, 88 percent pointed to a lack of funding and complicated billing procedures for reimbursement, and 69 percent highlighted high staff turnover and poor job retention.

All these factors become particularly problematic when the state and the federal government are asking providers to undertake more staff training to gain expertise in the principles and practice of individualization, to enroll more young adults as clients, and to provide individualized support in the community as each of their charges goes to different job sites and engages in non-work activities in various places.

According to the consent decree, all young adults who left high school between 2013 and 2016 – those seeking adult services for the first time - were to be offered employment by July 1, 2016. But the state still hasn’t fulfilled that requirement, even after the deadline was extended to Sept. 30 of this year.

Moseley reported that on Sept. 29, the state had achieved 77 percent of that goal, or 257 job placements out of an “employment census” of 334 young adults.

Victoria Thomas, the DOJ lawyer, said she believes the state is using effective strategies to reach out to the remaining young adults and will monitor the situation.

She said DOJ lawyers visited the Birch Academy at Mount Pleasant High School recently and while they were generally delighted with the transformation, they were surprised to learn “how few high school students exited directly into supported employment.”

Students at the Birch Academy are protected by the predecessor to the 2014 statewide consent decree, called the Interim Settlement Agreement. The agreement, signed in 2013, was limited to addressing the use of the Birch high school program as a feeder to a now-defunct sheltered workshop in North Providence called Training Through Placement.

Thomas said that, according to the Interim Settlement Agreement, students who turn 18 should have the support they need to make the transition to work or actually hold a job while they are still in school.

Thomas said she wants to address the transition issue in the time remaining for the Interim Settlement Agreement, which is to end July 1, 2020.

All parties to the settlement must be in “substantial compliance” with the Interim Settlement Agreement a year before it expires. What substantial compliance looks like might be different for the state than for the Providence School Department, said Thomas, telling the judge that the DOJ will prepare some recommendations on the matter.

The city has met virtually every target set out by the Interim Settlement Agreement and earned McConnell’s praise. “Keep it up,” he said.

The state is responsible to the court for the work done by the private service providers under the terms of both the Interim Settlement Agreement and the statewide consent decree.

The providers’ performance got mixed reviews from Moseley and another consultant, William Ashe, who in early October analyzed a small random sample of plans, looking for the degree to which they were individualized and how they compared to the actual services provided.

The consultants expected the providers to use a guide on “person-centered thinking” developed by the Sherlock Center on Disabilities at Rhode Island College to formulate plans that put a particular person’s needs, preferences, and goals at the center of the planning process.

In 10 of the 17 plans, participants chose non-work activities from a menu of offerings that rotated on a weekly schedule, according to Ashe. But this kind of choice is not considered “person-centered” because the participants were not able to consider the the full range of opportunities available in the community.

“It is fair to say that the implementation of person-centered planning remains a work in progress where there has been significant but uneven advances in the development of person-centered planning practices. There remains a significant amount of work yet to be done,” Ashe wrote.

He found other instances in which plans indicated individuals had significant problems in communication. But neither the plans nor the actual services addressed ways in which communication could be improved.

“Frequently, there were clear instances of personal preference identified in the planning process that did not appear to be reflected in the services that were actually happening, Ashe said.

For example, one man indicated he wanted to learn to read and use a computer, but none of the goals written in his plan responded to that request.

Some of the plans reviewed were for clients of Easter Seals Rhode Island, formerly Community Work Services, an agency that nearly lost its license to operate in 2017 but has made a dramatic turnaround during the last year.

Ashe said “there are still very substantial steps that need to be taken in order to get this organization to an acceptable level of “person-centeredness” and to some extent, the same applies to other agencies.

Agencies should “diversify” the way that integrated day services are provided, he said.

From what Ashe observed, he said, it felt like community agencies like the YMCA and a bowling alley were becoming “a little bit like a day program” as staff and clients from one or more service providers gathered in the same place at the same time.

At the bowling alley, staff from several agencies sat together with their clipboards and watched the bowlers, Ashe said.

Based on a review of documents and direct observations, Ashe said, “there is a significant ongoing need for continued training on person-centered planning with an emphasis on how to take a plan and put it into action.”

“A good person-centered plan by itself does not produce good person-centered outcomes. How to individualize and implement these plans needs to be a focus for training,” Ashe concluded.

Read the full monitor’s report here.

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

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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.)

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

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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 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.”

 

Two Pilot Programs, Two Approaches to Supported Employment, Aired at RI DD Task Force Meeting

By Gina Macris

(This article (been corrected.)

Between January and mid-August, about one in four Rhode Islanders with developmental disabilities who were enrolled in a new supported employment program landed jobs, with help from private service agencies funded through the state Division of Developmental Disabilities (DDD).

But there are signs of strain on the ability of these agencies to train the workers they need to continue to deliver results over the long haul.

 In the meantime, the Office of Rehabilitation Services (ORS) has started a much smaller pilot project , now in its second quarter of operation.

The two pilots take different approaches to funding employment-related supports for adults with developmental disabilities.

The DDD program adopts a fee-for service reimbursement model – based on the severity of a client’s disability - and a complicated billing mechanism that is similar to the one set up six years ago by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) for funding all developmental disability payments to private providers.

There is no provision for funding up front to support agencies’ costs for training workers to provide employment-related services.

The ORS project offers a flat rate of $7,000 per client, with $1750 up front so provider agencies can train and assemble a team of employment specialists. Providers are eligible for two additional quarterly payments of $1750 as long as they document the progress the clients are making.  A final payment  of  $1750 is awarded at the end of a year’s time only if the client has landed a job.

According to a recent report to a federal court monitor, state officials are evaluating both the ORS and DDD approaches to determine “what aspects of each model work for providers, what challenges exist, and how ongoing efforts of the two agencies can be coordinated.”

Tracey Cunningham and Joseph Murphy

Tracey Cunningham and Joseph Murphy

Joseph Murphy, an administrator at ORS in the Department of Human Services, and Tracey Cunningham, Chief Employment Specialist in the developmental disabilities division at BHDDH, gave status reports on their respective programs at the monthly meeting of the Employment First Task Force Sept. 12.  

Cunningham said that between January and mid-August, the DDD program found jobs for 116 of a total of 425 adults with developmental disabilities who were enrolled. Nine others found jobs that didn’t work out, Cunningham said, and they are looking for better matches.

The program could take on an additional 92 clients, up to a maximum of 517, according to figures provided by Cunningham. However, service providers are having trouble lining up the trained staff to expand their rosters and want to focus instead on doing a good job with the clients they already have, Cunningham said.

Claire Rosenbaum, Adult Services Coordinator for the Sherlock Center on Disabilities at Rhode Island College, said one training course was cancelled recently for lack of enrollment. The Sherlock Center has a contract with the state to provide the needed training tuition-free.

In addition, the “self-directed” families, those who manage services independently for loved ones, are having a difficult time finding properly trained job developers and job coaches, Rosenbaum said. 

Cunningham said about 90 percent of “self-directed” families who seek supported employment services purchase them from private agencies.  But Rosenbaum said families are having difficulty identifying agencies able to help them.

Cunningham said three agencies are accepting clients from “self-directed” families:  Goodwill Industries, Work, Inc., and a new program called Kaleidoscope.

Nicole Kovite Zeitler

Nicole Kovite Zeitler

Nicole Kovite Zeitler, a lawyer for the U.S. Department of Justice who monitors supported employment in conjunction with a 2014 consent decree enforcing the Americans With Disabilities Act (ADA), asked what was driving the providers’ inability to expand.

 Low salaries are the primary reason, said Donna Martin, executive director of the Community Provider Network of Rhode Island, a trade association representing about two thirds of the private agencies providing services in Rhode Island.

She said aging baby boomers also are creating an increased demand for direct care workers. Turnover is high – about 35 percent - and one in six jobs goes vacant in the developmental disability system, she said.

The General Assembly this year enacted the second consecutive raise for direct care workers. (Read related article here.)

But the increase, an estimated 42 cents an hour before taxes, is not expected to make a significant difference in the existing subsistence-level wages. Nor will it be any easier for developmental disability agencies to hire or keep new workers.

Meanwhile, the funding for the DDD supported employment program has been greatly under-utilized, even while the developmental disability service agencies have struggled to hire and train enough workers. (Read related article here.)                                 

The DDD program provides increased allowances for  job-seekers, based on the degree to which they lack independence,  but  most of the expenditures are set-aside for one-time performance bonuses to the agencies when:

  •  A job coach or job developer completes training
  •  A client gets hired
  •  A client remains employed for 90 days
  •  A client remains employed for 180 days.

Agencies receive $810 for each worker who has completed training. The remainder of the bonuses are arranged on a sliding scale, depending on the severity of the client’s disability, with the largest payments resulting from placement and retention milestones for those with the most complex needs.

Excluding any reimbursements for worker training, which were not part of the original design of the DDD program, the average maximum one-time reimbursement was initially projected to be $9,700 for young adults and $15,757 for older adults – those who left high school before 2013. Any updated figures were not immediately available.

The pilot operated by the state Office of Rehabilitation Services (ORS)  works with seven developmental disability service agencies to help a total of 49 clients find jobs. Five have had success so far, Joseph Murphy, program administrator, told task force members.

The ORS program, which receives technical assistance from Salve Regina University in Newport,  is now in the second quarter of the program year, while DDD program is in the third quarter. 

The ORS program considers a successful placement to be a minimum of ten hours a week in competitive, integrated employment in the community, although Murphy said Sept. 14 that it accepts clients no matter how many hours' work they seek. The ORS program offers a $1,000 bonus for job placements that exceed 20 hours a week and last at least six months. In the DDD program, a successful placement may involve fewer than 10 hours' work a week.

Victoria Thomas

Victoria Thomas

The employment goal of the consent decree is an average of 20 hours a week of work at minimum wage or higher, although DOJ lawyer Victoria Thomas said there are no hourly employment requirements in the ADA.

“It just says people with developmental disabilities should have the option of integrated services,” she said.

The consent decree resulted from findings of the DOJ in 2014 that the state’s developmental disability services  over-relied on segregated sheltered workshops paying sub-minimum wages and non-work programs resembling day care.  As part of a system-wide overhaul, the state must support increasing numbers of adults with developmental disabilities in competitive employment in the community through Jan. 1, 2024.

The Employment First Task Force was created by the consent decree to serve as a bridge between state government and the community.

All photos by Anne Peters

This article has been corrected to reflect the fact that the up-front payment to providers in the ORS supported employment program is $1,750, one quarter of the total $7,000 allocation per client. In a clarification, Joseph Murphy, the program administrator, said it accepts clients no matter how many hours a week they seek competitive employment, even though a placement must be for at least ten hours a week to be considered successful for the purposes of the program.

RI Direct Care Workers To See Raises in October Paychecks; Legislator Says They Deserve More

By Gina Macris

Raises for direct care workers in Rhode Island, including those who serve persons with developmental disabilities, are scheduled to show up in paychecks in October. But the increases are unlikely to fix problems caused by wages that many consider inadequate to stabilize a workforce plagued by high turnover, high vacancy rates, and high overtime. 

Even after receiving the pay hike, many workers will be forced to continue working second jobs to make ends meet.

Meanwhile, their employers will still have to scramble to fill vacancies, as Massachusetts prepares to pay $15 an hour for the same work beginning July 1, 2018.  Currently, one in six jobs goes unfilled, driving up overtime costs for developmental disability providers, according to the Community Provider Network of Rhode Island, (CPNRI), a trade association.  

Those who work with adults with developmental disabilities in Rhode Island make an average of $11.14 an hour, and an estimated increase of 42 cents would bring that hourly rate to $11.56. The exact increase is expected to vary from one agency to another, depending on benefits offered.

Unless the workers are single adults supporting only themselves, $11.56 an hour is not enough for a minimum subsistence wage – no restaurant meals, entertainment or savings accounts - that nevertheless avoids food stamps or other public assistance, according to the Living Wage Calculator at the Massachusetts Institute of Technology.

In Rhode Island, 41 percent of those working with adults with developmental disabilities have taken more than one job to make ends meet, according to CPNRI. The trade associaation presented figues to the General Assembly earlier this year that show 65 percent of direct care workers were heads of household in 2014, and 48 percent of them received public assistance between 2011 and 2013, the latest period for which data was available.

Entry-level positions for direct care positions at developmental disability service agencies generally hover a little above the minimum wage, currently $9.60 an hour. But the minimum wage is to get a 50-cent bump to $10.10 on Jan. 1 and another increase, to $10.50 an hour, on Jan. 1, 2019.

 In the current budget, $6.1 million in federal-state Medicaid dollars have been set aside for raises for those who provide direct care to adults with developmental disabilities, effective July 1.

Governor Raimondo also asked for a total of $5.2 million for increasing the pay of home health care aides, but the General Assembly delayed implementation of that raise until Oct. 1. House spokesman Larry Berman said that the way a similar increase was paid out to home care workers in 2016 made implementation problematic prior to Oct. 1 of the budget year and that issue was taken into account this year. The delayed implementation also saves more than $600,000 in state funds.  

Developmental disability service agencies also can expect to see higher reimbursement rates Oct. 1, but those increases will be retroactive to July 1, in accordance with language in the budget.

State Sen. Louis DiPalma, D-Middletown, who has led a call for improving the prospects of direct care workers, agreed that the direct care workers are treading water, in effect, relative to the minimum wage.  

He said he is well aware that raises enacted in 2016 and 2017 are not enough to compensate them for complex work that is often also physically demanding.

The new Amazon warehouse in Fall River is paying more than $12 an hour to start, he said.

In the fall of 2016, DiPalma launched a “15 in 5” campaign to increase pay of home health care aides and direct care workers to $15 an hour in five years – by July 1, 2021.

There appears to be broad sentiment in the legislature that direct care workers deserve better, judging from the number of bills introduced in the General Assembly earlier this year to speed up the climb to a $15 hourly rate. One measure, sponsored by the House Deputy Majority Leader, Rep. Jean Philippe Barros, D-Pawtucket, would have set Jan. 1 as the implementation date for a $15 hourly wage.

But the bills appear to have been more a gesture more than anything else.

DiPalma, first vice-chairman of the Senate Finance Committee, said that the state’s finances cannot support that kind of a boost immediately.

The state faces the prospect of a $237 million deficit in the fiscal year that begins next July 1, according recent memos from the State Budget Officer, Thomas Mullaney, and the Senate Fiscal Advisor, Stephen Whitney. And that estimateddeficit does not include $25 million in unspecified savings which the state still must trim from the current budget. Jonathan Womer, Director of the Office of Management and Budget,  has expressed skepticism that all the cost-cutting assumptions in the enacted budget can be achieved.

Department heads preparing for the next budget cycle are being asked to cut expenditures by 10 percent, with one exception being entitlement programs, like the federal-state Medicaid program, which funds the pay for home health care aides and developmental disability workers, among many other services. 

RI Budget Goes Into Limbo Over Car Tax Contingency Amendment Inserted By Senate

By Gina Macris

The $9.2 million Rhode Island budget, which appeared poised for final passage by the Senate on June 30, now hangs in limbo on the first day of the new fiscal year, July 1, a casualty of a dispute between the Speaker of the House and the President of the Senate over the Speaker’s signature car tax relief plan.

The situation means that by law, the levels of spending approved by the General Assembly a year ago remain in effect until the General Assembly resolves the Fiscal Year 2018 budget – and no one knows when that might be.

For Rhode Islanders who are elderly or have disabilities, the one exception to the spending freeze is separate legislation, on its way to the governor, which restores their free bus passes on the Rhode Island Public Transit Authority, a $5 million item.

But increases to direct care workers in both developmental disabilities and home health care fields remain up in the air. So do millions of dollars in reimbursements to private developmental disability service agencies, some of them for expenses already incurred in the fiscal year that ended June 30.

The dispute between House Speaker Nicholas A. Mattiello and Senate President Dominick Ruggerio, centers on a Senate amendment which would freeze the level of Mattiello’s car tax relief if, at any time during the six-year phase-out, the state has to dip into its rainy day fund.

During the floor discussion, senators said the state needed a safety net in the event the state cannot ultimately afford the overall $221 million cost of the phase-out, especially in light of uncertainty in Washington over billions of dollars in proposed cuts to Medicaid nationwide. Those drastic reductions would deal Rhode Island a severe blow in many human service programs, including those supporting adults and children with developmental disabilities.

The Senate passed the amendment, with the rest of the budget that had been approved by the House, with just hours remaining in the old fiscal year.

But by that time, Mattiello had adjourned the House and sent the members home. He gave no indication when he might call the House back into session.

In a statement, he said “Despite the House, the Senate and the Governor reaching agreement on a responsible and balanced state budget, I learned today that the Senate was likely to amend the budget on this, the last legislative day. This would have resulted in a long and unproductive night for the members and the public.  I urge the Senate to honor the original agreement and pass the state budget.”

 

RI Senate To Vote On $256.5 Million DD Budget

By Gina Macris

Rhode Island Governor Gina Raimondo’s request for an overall $10 million increase in developmental disability spending in the next fiscal year appears to be headed for full approval by the General Assembly, as the Senate prepares to vote on the $9.2-billion state budget before the current budget cycle closes June 30 and the July 4 holiday weekend begins. 

On June 22, the House ratified the recommendation of its Finance Committee, with Speaker Nicholas A. Mattiello, D-Cranston, saying in advance of the vote that legislators have heard the message of direct care workers making poverty-level pay in high-responsibility jobs.

The Senate Finance Committee is scheduled to act on the budget at a hearing June 27 at 2:30 p.m. in Room 211 of the State House.  A floor vote in the Senate is expected Thursday or Friday.

About $4 million of the developmental disability spending increase would be applied to the current budget and an additional $6 million would go into the new budget cycle beginning July 1. The total allocation for developmental disabilities in the next fiscal year would be $256.5 million.

Even as the Rhode Island House was deliberating, U.S. Senate Republicans in Washington unveiled a health care bill that would severely cut Medicaid funding -– the backbone of essential medical care and other support services for the poor and disabled throughout the country. Within 24 hours, enough Republican opposition to the bill emerged in the Senate to threaten its passage. 

The proposed state budget in Rhode Island includes a total of $11 million for one-time raises for home health care workers and those who work directly with adults with developmental disabilities. Those wage increases would raise the average hourly pay for developmental disability workers from about $11.14 to about $11.69 an hour.

The original language in Governor Raimondo’s proposal used a separate budget article to spell out assurances that the money set aside for the raises could not be used for anything else, but the House version eliminates that article and embeds those mandates elsewhere in the revised budget bill. 

Workers can expect to see the incremental boost in pay no later than Oct. 1. Three months later, on Jan. 1, 2018, the House-approved budget would raise the minimum wage from $9.60 to $10.10 an hour. On Jan. 1, 2019, the minimum wage would advance again, to $10.50 an hour.

State Sen. Louis DiPalma, the leader of a drive to raise the pay of developmental disability workers to $15 an hour by July 1, 2021, said the day after the House vote that he has already begun work on the next phase of the campaign.

Last fall, DiPalma’s “15 in 5” campaign issued an early call for direct care raises, while the executive branch was still working on the budget proposal. In January, when the governor submitted her budget to the General Assembly, she highlighted the pay increases, along with a hike to the minimum wage and other initiatives.  

Several bills intended to speed up the timetable for a $15 hourly wage were introduced in the House during the current session, including one sponsored by Rep. Jean Philippe Barros, D-Pawtucket, Deputy Majority Leader, which would set the starting date for that increase to next Jan. 1.

The prospective budget doesn’t support a $15 hourly rate, but Barros still got a hearing on his bill before the House Finance Committee on June 21.

Direct care workers do an “awful lot of work for some of the neediest” residents of Rhode Island, and “they certainly deserve the benefit for their labor,” Barros said.

Massachusetts is set to increase the wages of direct care workers to $15 an hour in 2018, a development that could exacerbate already high turnover in direct care work in Rhode Island.

Figures on turnover presented to the General Assembly in recent months range from 30 percent a year to 60 percent of new hires in the first six months. There are about three dozen developmental disability service agencies operating in Rhode Island and each one has a different rate of turnover.

Testifying in favor of Barros’ bill, Robert Marshall, spokesman for the Rhode Island Developmental Disabilities Council, said that high turnover, a problem for years, has had a negative impact on those who need care.

Moreover, the nature of the work is changing to emphasize more individualized services, Marshall said, an apparent allusion to new federal Medicaid requirements and federal court enforcement of changes in daytime developmental disability services under provisions of a 2014 consent decree.

The greater individualization means that jobs in the direct service field are no longer interchangeable, he said. 

“Massachusetts will be very happy for us to train the staff and then give them a nearly 50 percent increase” in pay, Marshall said.  In other words, he said, a worker in East Providence can drive an extra three miles and do the same job in Seekonk, Mass., for significantly more money.

The money that is now spent on training new workers and overtime to fill critical gaps in services would probably cover most of the pay increase, Marshall said.

Part of the $10-million increase in the developmental disability budget would be used to fill a $3 million shortfall in the current fiscal year in supplemental payments to private providers and to add another $500,000 to that allowance in the budget cycle that begins July 1. 

The combined increases would hike supplemental payments from $18.5 million to $22 million a year –about 10 percent of all reimbursements made to private providers of developmental disability services – a level that DiPalma, the vice-chairman of the Senate Finance Committee, has flagged as a sign that the standard funding formula for individual clients is not working.

The supplemental payments reflect successful appeals, on a case-by-case basis, of a funding formula applied to a controversial assessment which Rhode Island uses to determine an individual’s ability to function independently. The funding formula does not take into account a client’s goals and preferences in determining individual authorizations – a problem cited by a federal court monitor overseeing reforms to the developmental disability system.

All developmental disability services in Rhode Island are funded by Medicaid at a ratio of slightly more than one federal dollar for every state dollar.

Medicaid has long been an entitlement program in which the federal government matches state outlays for a wide range of services, ranging from health care and nursing home services to specialized educational and therapeutic services for children with disabilities and community-based supports for disabled adults.

The U.S. Senate Republican bill – devised behind closed doors and released on June 22 - would set per-capita limits on federal Medicaid reimbursements to states and threaten many of the services Rhode Island now offers.

The entire Rhode Island Congressional delegation has slammed the bill, saying it amounts to a massive transfer of wealth to the rich at the expense of the poor, the elderly and the disabled through $600 billion in tax cuts.

In a statement, Sen. Jack Reed said, “Trumpcare-supporting Republicans can make all the claims they want, but their motives are obvious: they want massive tax cuts for the wealthiest at the expense of hardworking Americans whose lives, in many cases, depend on access to care.”

Sen. Sheldon Whitehouse said the measure “would gut Medicaid with even deeper cuts than the wretched House version. This will blow huge holes in state budgets, forcing terrible choices between opioid treatment, care for seniors, and students with disabilities. And that’s just the beginning.  It goes after women’s health care. It would allow insurance companies to charge seniors more, and sell plans that don’t offer the basic care Americans expect. It would be bad for Rhode Islanders.”

Governor Raimondo said she will join Reed, Whitehouse and Reps. David Cicilline and James Langevin in “active opposition to this disastrous proposal." 

She accused Congressional Republicans of “trying to pass an immoral piece of legislation,” putting “American and Rhode Island lives at risk so that millionaires and billionaires can get a tax cut.”

Budget Testimony: Need For DD Raises Critical, Stable Services Demand Double Current Funding

tom Kane                         RI capitol tv Image

tom Kane                         RI capitol tv Image

By Gina Macris 

This article has been updated. 

As others had done before him, Tom Kane told members of the House Finance Committee that he “could not stress enough” the importance of the General Assembly approving an additional $6.1 million to lift the poverty-level pay of some 4,000 front-line employees of private agencies under contract with the state to care for adults with developmental disabilities.  

At the same time, Kane, CEO of AccessPoint RI, one of those private agencies, said in a hearing April 11 that the overall funding for developmental disabilities is only about 50 percent of what is needed for service providers to regain the financial stability they once had and help their clients receive the supports they need and deserve. 

All together Governor Gina Raimondo seeks General Assembly approval for raising the currently enacted developmental disability budget of $246.2 million by $10.5 million over the next 14 months, with $4.4 million of the increase applied before June 30. Another $6.1 million would be added for the fiscal year beginning July 1, for a total of $256.7 in the fiscal year ending June 30, 2018.

Kane explained to members of the Finance Committee’s Human Services Subcommittee, led by Rep. Teresa A. Tanzi, D-South Kingstown and Narragansett), the different kinds of pitfalls he saw in Raimondo’s attempts to offset the cost of the raises by cutting expenses in other areas – or not covering some necessary spending at all.  

For example, Kane said, AccessPoint had a $107,000 increase in health insurance rates this year. ”There is no money” to cover that cost, he said. “We spend almost $1.2 million in health insurance for 158 people,” he said.  Kane said he could not expect his employees, many of whom make less than $11 an hour, to contribute more to health insurance, so other adjustments were made. He did not elaborate. 

“But at some point there’s going to be a collision between all these additional costs” and direct care workers, Kane said. In written remarks, he said the “cost of other insurances, building maintenance, rent, vehicles, fuel and office supplies continue to increase, adding to the financial strain on organizations. These costs should not be seen as extraneous. They directly relate to our ability to focus our full attention on good quality service provision,” Kane said.

He also zeroed in on some line-item savings that Raimondo has budgeted to offset the cost of the second consecutive raise for direct care workers, particularly the plan to reduce group home costs by $2.1 million in state funds. That ongoing effort, driven by economic and policy considerations, aims to move group home residents to less costly shared living arrangements in private homes - a process that requires clients to actively agree to the change. 

During the transition, there must be a consideration for maintaining the living arrangements of the individuals left behind in the group homes, Kane said, recalling a case in which two of four people in one AccessPoint home opted for shared living. Because the agency could not afford to keep the house operating with only two residents, it sought supplemental funds from the Division of Developmental Disabilities for a few months to cover outstanding expenses while it figured out its long-range plan, Kane said. The home finally closed, he said.

The example illustrates how, during a transition, “you are balancing two systems at the same time, “ Kane said.

“If you don’t pay attention to the current system with the same amount of zeal as the new system, people will get lost,” he said.

In fact, the state so far has been unable to realize much savings from the emphasis on shared living, only $100,000 of a target of $2.6 million in state funds in the current fiscal year, according to officials of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Since last July, a total of 48 group home residents have committed to shared living. That figure is 18 shy of a target of 66 individuals for the fiscal year ending June 30.

Kerri Zanchi, Director of the Division of Developmental Disabilities, said that of the 48, 28 have moved since December, when the division began addressing issues that were barriers to shared living arrangements, like a need for physical modifications to some houses to make them more easily accessible, as well as extra medical and behavioral supports needed in the host homes. She said the division is also considering a range of other alternatives to group home living.

Ultimately, Kane said, a budget is a “representation of the values of our state.”  The care for people with disabilities and the salaries paid to caregivers either will reflect the dignity and respect afforded valuable members of society, or they won’t, Kane said.

 “I understand you have a lot of very difficult decisions to make,” he told the legislators, “and the numbers (revenues) aren’t looking great this year, which are going to make all those decisions even tougher.”

But Kane asked them to look at historical spending for developmental disability services, which he said are now only $9 million more than they were in 2010. In the meantime the demands of a 2014 federal consent decree with the U.S. Department of Justice, as well as new Medicaid rules for Home and Community Based Services (HCBS), make the job of supporting individuals with disabilities much more complex and expensive, he said. 

Traditionally, he said, support has been provided in “congregate” settings, or facilities “where you have groups of ten people with one staff person. “

“Under the consent decree they have to be either at a job or in the community,” he said. Those settings demand ratios of one staffer for each client, or no more than three clients, depending on the circumstances, Kane said.  In addition, the consent decree requires job coaches to be trained to a specific certification. and trained workers will demand higher pay, Kane said.t

The latest statistics indicate the current average pay for direct care workers is $11.14 an hour, before taxes, a figure that reflects a raise of about 32 cents effective last July 1, according to Donna Martin, executive director of the Community Provider Network of Rhode Island (CPNRI), a trade association which represents 25 of some three dozen private providers of developmental disability services.

The hourly reimbursement rate the state pays the employers for direct care workers is $11.91, which includes both wages and most – but not all – of employers’ actual costs for overhead and fringe benefits. That figure is still lower than the hourly reimbursement rate of $12.03 the General Assembly authorized in July, 2011  at the same time it cut a total of $24 million for private provider services, according to a chart prepared by James Parisi of the Rhode Island Federation of Teachers and Health Professionals.

In October, 2011, three months after the General Assembly acted, BHDDH reduced the actual reimbursement rate to $10.66 an hour, according to Parisi’s calculations.  Since then, the rate has been climbing incrementally to its current level of $11.91.

Parisi represents workers at the Trudeau Center in Warwick, where the starting salary is now $10.71 an hour.

Tori Flis, a service coordinator at one agency, which she did not name, said that even though there has been a slight increase in wages in the last year, the turnover is “just as high.”

Martin, of CPNRI, put the average turnover at one out of three workers a year, or 33 percent, although it varies from one agency to another.  Employers are unable to fill one out of six vacancies, and it costs an agency an average of $4900 every time it must search for a replacement and train a new hire, Martin said.  

Markella Carnavalle, who works at Trudeau, described the impact that turnover can have on individuals with developmental disabilities.

One client, who had grown attached to a worker who had to leave, was “crying for weeks,” she said.

That person had behavioral issues and didn’t want to work or eat, Carnavalle said. The client believed the worker left because “they didn’t want to be with me,” Carnavalle said, but “you can’t say the person needed more money. They don’t look at it that way.”

“You become a part of their lives and they become a part of yours” over time, Carnavalle said.

Flis, meanwhile, said the workers she supervises all have two and three jobs to make ends meet. Some work as many as three consecutive 12-hour shifts at different agencies – a total of 48 hours straight.

Those kinds of conditions lead to burnout, abuse and neglect, Flis said. The only reason she can afford to work one job at Trudeau is that she is married to a teacher who has a good salary and fringe benefits, including a pension, Flis said.

In another part of the current budget,  BHDDH officials and the legislators disagreed on whether there is funding for a developmental disabilities ombudsman, a position approved by the General Assembly last year after a woman died in a state-run group home. The state-run residential system is separate from the private system. 

The legislators and a member of the House fiscal advisory staff, Linda Haley,  said a total of $170,000 had been included in the BHDDH budget for the position.

Representing BHDDH, Christopher Feisthamel, the chief financial officer, and Zanchi, the developmental disabilities director, both said they understood it was an “unfunded mandate.”  Haley and BHDDH officials spoke informally after the hearing but reached no agreement on the status of the position.

(This article has been updated to correct the total cost of health insurance for AccessPoint RI, which is $1.2 million, not $12 million, according to CEO Tom Kane.)

 

RI Senate Finance Hearing Highlights Cost Overruns, Challenges, in DD Budgets

By Gina Macris 

Cost overruns are a recurring theme for Rhode Island’s Division of Developmental Disabilities, with expenses for mandated services running  about $4.4 million over budget in the current fiscal year, while $6 million in projected savings group home-related costs  are proving elusive. 

Overall, Governor Gina Raimondo seeks to close out the current fiscal year with a total of $250.6 million in developmental disabilities funding and requests $256.7 million for the fiscal year beginning July 1. Taken together, the $4.4 million increase she has requested in current spending and the proposed increase of nearly $6.1 million for the next fiscal year run almost $10.5 million more than the existing budget authorized by the General Assembly - $246.2 million.   

At a budget hearing April 4, members of the Senate Finance Committee seemed to understand the challenges faced by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), but Sen. Louis DiPalma, D-Middletown, still asked officials for more realistic budget figures in the future.

One case in point was $100,000 in actual savings in costs related to group homes, rather than the $2.6 million cut in state revenue that originally had been projected during the current fiscal year. 

The savings are associated with a shift in residential care from group homes to less costly shared living arrangements in private homes scattered throughout the state, a change that is driven both by budgetary constraints and federal Medicaid rules.

In April of 2016, BHDDH said it would move a total of 100 individuals with developmental disabilities from group homes to shared living by the end of the fiscal year June 30, but it achieved only 27 transfers, DiPalma said. 

For the current fiscal year, the goal is 66 moves. Noting the $2.5 million gap between projected and actual savings, DiPalma said he would have recommended a target of 45 transfers. 

But “the budget is what it is,” he said.

“If you want to move someone, they have to say yes,” DiPalma said. “If they say no, they stay where they are.”

Rebecca Boss, the acting BHDDH director, said, “you are right about the challenges.”

But she added that BHDDH already has 45 commitments from group home residents who have agreed to go into shared living.  

A year ago, the Division of Developmental Disabilities had not yet done a “deep dive” into the shared living program to understand what needed to be done to make it more attractive to consumers, Boss said.  She suggested that since then, officials have identified some issues that have prevented more rapid expansion of the program, but Boss was not specific.

Pressed for more details, she said they would be forthcoming in a month – May 5.  At last count in December, there were 333 residents in shared living arrangements and 1,283 in state or privately-run group homes, according to a Senate fiscal analysis. 

In the next budget, beginning July 1, BHDDH has proposed saving $3.9 million in state revenue related to movement out of group homes, but Boss said she could not guarantee that the department would meet its future budget targets. 

DiPalma also warned Boss that a similar transition away from group home care for children in state custody has shown that, for a time, residential costs actually increase because the state must maintain group housing while it builds its community-based network of home care.

A big part of the savings plan in the next fiscal year is to close a total of five group homes run directly by the state through Rhode Island Community Living and Supports (RICLAS), a division of BHDDH, including two in July, one in October, and two in January, 2018. 

Jim Cenerini, legislative affairs and political action coordinator for the American Federation of State, County and Municipal Employees, Council 94, (AFSCME) expressed concern about the closures, which would move 30 residents, or 20 percent of the 150 people in the state-run system, into private care.

He said BHDDH officials have not talked about the closings with the union, which represents several hundred workers staffing the homes. 

Boss said BHDDH officials would be “more than happy” to sit down with the union.

Cenerini said, “We believe RICLAS provides a very vital service as a provider of last resort.”  He maintained that RICLAS residents are not ready to go to shared living arrangements. 

Two years ago, the union negotiated many cost-saving concessions with BHDDH that gave the department much more flexibility in staffing, but BHDDH hasn’t implemented any of the reforms except to hire seasonal workers who are ineligible for benefits, Cenerini said.

RICLAS workers are state employees, many of whom make at least double the poverty-level wages of workers in a parallel system of private agencies under contract with the state to provide most of the developmental disability services.

DiPalma told Cenerini that the “train has left the station” on the shift from congregate care to settings that are more like home. 

The change in Medicaid rules have been influenced by the 1999 Olmstead decision of the U.S. Supreme Court, which ruled that the Americans With Disabilities Act requires services for all people with disabilities to be available in the least restrictive environment that is therapeutically appropriate. That environment is presumed to be the community for both daytime and residential services.

“It’s up to us to figure out how to move those people into the community,” DiPalma said, and “how to facilitate the  workers at RICLAS to do other things.”  The conversation should not be about residents remaining in RICLAS homes “because this is what we have,” DiPalma said.

Cenerini emphasized that RICLAS offers continuity of care, something the private system lacks because of low wages and high turnover. “I don’t want to see the destruction of my union,” he said.

About 20 RICLAS workers also host adults with developmental disabilities in their homes as shared living providers, Cenerini said.

One reason BHDDH has a hard time meeting budget targets, Cenerini said, is that “they are asked to do so much with so little.”

Testimony at the hearing reiterated support for a $6 million wage increase in the fiscal year beginning July 1 for private-sector direct care workers, who now earn an average of about $11.14 an hour, according to the latest figures provided by Donna Martin, executive director of the Community Provider Network of Rhode Island. 

The current hourly average of $11.14 is only slightly higher than the federal poverty level of $9.82 an hour for a single parent household with two children, a profile that represents the typical direct care worker in developmental disability services, she said.

About one in three workers a year leave private agencies, many of them for slightly higher pay in a local market or to work at RICLAS, where they are paid an additional $5 an hour to do the same work, Martin said in written testimony she submitted to the committee.

The budget now in effect gave private-sector workers their first increase in a decade, putting an additional 36 cents an hour in their pockets, before taxes.  

DiPalma has sponsored a resolution that would increase the pay of these workers to $15 an hour in five years – the fiscal year beginning July 1, 2021. (In the House, State Rep. Teresa A. Tanzi has sponsored a similar resolution, which would achieve a $15 hourly rate in three years – by July 1, 2019.)

DiPalma’s and Tanzi’s resolutions also urge the legislature to link future annual raises to the consumer price index so that pay stays ahead of the minimum wage, currently $9.60 an hour. Governor Raimondo has proposed increasing the minimum wage to $10.50 on July 1.   The Senate Finance Committee held a separate hearing on wage increases May 21. (Click here to read related article.)

DiPalma highlighted another feature of the budget that seeks to add a total of $500,000, or $250,000 in state funds, to a supplemental allocation for developmental disability services that he said runs about $20 million to $22 million annually.

These supplemental funds are used when those receiving developmental disability services believe their individual budgets are inadequate and make a successful argument for more money, or when they need a short term boost in care triggered by events like a discharge from a hospital, according to Kerri Zanchi, Director of the Division of Developmental Disabilities.

DiPalma said he concurred with the use of funds to cover short-term extra needs, but he believed $22 million a year, or 10 percent of all service appropriations -  was too high for supplemental appropriations. 

 He called on BHDDH to change the equation that assigns individual funding.

Zanchi said the individual budgets are assigned on the basis of a standardized assessment of an individual’s need called the Supports Intensity Scale. In November, Rhode Island moved to an updated version of the assessment believed to be more accurate and began tracking the results to see if the number of appeals decline in the long run.

DiPalma noted that the current arrangement favors those who have the strongest advocates on their behalf.

Another hearing on budget is scheduled before a subcommittee of the House Finance Committee on Tuesday, April 11, in Room 35 of the State House at the conclusion of that day’s full House session. 

 

 

Low Wages Create Labor Shortage in RI DD Services; Advocates Testify for Higher Pay

By Gina Macris

Low wages for workers who provide direct care for adults with disabilities in Rhode Island have led to such a crisis that some agencies lose 80 percent of their front-line staff within six months, although the average annual turnover rate is 33 percent.

To fill the gap, their employers spend millions of dollars in overtime and in training new hires, only to lose them again.

Advocates for the developmental disability service system spelled out the consequences of poverty-level wages for direct care workers during a hearing before the Senate Finance Committee March 21.

A Rhode Island College expert submitted written testimony which said that an underpaid workforce results in instability, anxiety, and a diminished quality of life in the people it serves. 

The new developmental disabilities director, Kerri Zanchi, also linked the stability of the workforce to the quality of services and outcomes for the people it serves. 

Governor Gina Raimondo has proposed adding $6.1 million for raises to direct care workers in the budget beginning July 1. If it passes, it would provide the second annual raise –albeit a modest one – for some 4,000 part-time and full-time caregivers.

The first raise was enacted under pressure from federal enforcement of a 2014 consent decree. The $5-million line item added about 36 cents an hour for front-line caregivers, giving them an average of $11.18 an hour retroactive to July 1, 2016, according to Sen. Louis DiPalma, D-Middletown, the first vice-chairman of the Senate Finance Committee.

DiPalma is leading a drive to increase the average wage for direct care workers and home health care workers to $15 an hour by July 1, 2021. Testimony during the hearing indicated that Massachusetts is on track to reach that goal in 2018.

DiPalma also noted that Rhode Island’s minimum wage rose 30 percent between 2012 and 2016, from $7.40 an hour to the current $9.60 an hour, while the average pay for direct care workers increased 1.6 percent during the same period.

Governor Raimondo is seeking a 90-cent increase in the minimum wage, or $10.50 an hour, for the fiscal year that begins July 1.  

The interstate disparity in wages, compounded by the fact that many Rhode Island residents can just as easily work in Massachusetts as in their home state, puts the developmental disability system at a distinct disadvantage in competing for employees.

Rhode Island’s system is “economically inefficient,” said Jim Parisi, spokesman for the Rhode Island Federation of Teachers and Health Professionals, who represents workers at Trudeau Memorial Center, one of about three dozen private developmental disability service providers in the state.

Donna Martin, director of the Community Provider Network of Rhode Island (CPNRI), said that an average of about 16 percent of jobs go unfilled, forcing employers to use overtime to fill vacant shifts, particularly in situations where safety requires a certain minimum level of staffing.

In some agencies the job vacancy rate is as high as 25 percent, according to Rebecca Boss, the acting director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals.

Martin, meanwhile, said reports from 18 of the 25 CPNRI member organizations indicate they spend a $2 million a year on overtime, suggesting that the total statewide could be higher. Turnover, which includes training new hires, costs an average of about $4900 per person, she said.

A raise this year is expected to be slightly bigger than the average of about 36 cents an hour enacted in the current year. The exact amount is difficult to calculate in advance because the rate the state pays providers reflects wages and some, but not all, overhead costs, Martin said. And overhead costs vary from one provider to another.

The workforce crisis is the biggest single issue her membership faces, Martin noted.  Data she submitted to the committee indicated that the demand for staffers who provide direct support of adults with developmental disabilities is expected to grow 38 percent by 2022.

In written testimony, A. Anthony Antosh, director of the Sherlock Center on Disabilities at Rhode Island College, linked the labor shortage to a diminished quality of service for individuals with disabilities – an issue which is at the center of ongoing enforcement efforts of the 2014 federal consent decree.

With some agencies losing more than 80 percent of new hires within six months, Antosh said, workers cite low pay and the complexity of the work as the chief reasons they leave. They must work two or three jobs simply to make ends meet, he said.

A growing body of research documents that a stable, high quality direct support staff produces positive results in the population it supports. Those benefits include “increased personal competence, increased employment, increased social networks and social capital and increased satisfaction with life,” Antosh wrote.

“A direct support workforce destabilized by low wages, limited opportunities for professional development and a lack of a career ladder results in instability and anxiety in the lives of the people they support,” Antosh said.

Those who depend on services have “decreased opportunities for community connection, decreased employment, and a general decrease in quality of service,” Antosh said.

Quality service, with access to community-based employment and non-work activities, are a key goal of the 2014 consent decree and a subsequent court order, which aim to enforce the 1999 Olmstead decision of the U.S. Supreme Court.

That ruling re-affirmed Title II of the Americans With Disabilities Act, which says that individuals with disabilities are entitled to receive services in the least restrictive environment that is therapeutically appropriate.The decision presumes that the community is the least restrictive environment. 

RI DSP Graphic 1 3-22-17

At right are submitted to the the Senate Finance Committee March 22 by the Community Provider Network of Rhode Island, a trade association of 25 private agencies that provide services to adults with developmental disabilities. In the graphic, DSP stands for "Direct Support Professional," the title given to front-line workers. The average hourly wage does not include raises enacted  that took effect July 1, 2016.