Union Raises Strike Possibility At Northern RI DD Provider Over Submarket Wages; No Deadline Set

By Gina Macris

Unionized workers supporting about 250 adults with developmental disabilities have indicated they may strike at Seven Hills Rhode Island over wages that lag significantly below those in neighboring states. No deadline has been set for a walkout.

The possibility of a strike by about 180 members of the United Nurses and Allied Professionals (UNAP) was disclosed in a letter that the management of Seven Hills sent to families Jan. 15. Talks between labor and management continue, according to a source with knowledge of the negotiations.

An official of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) indicated that the union must give a 10-day notice of any walkout.

Kevin Savage, Associate Director for Quality Management, said Jan.18 that “BHDDH is in close contact with Seven Hills administration, who have put together a plan to ensure coverage of necessary services in the event that the union gives them a 10-day notice that a walk out will occur.”

He said BHDDH contracts with Seven Hills to support about 250 persons with developmental disabilities in a variety of residential settings, as well as supported employment services and non-work daytime activities.

The Jan. 15 letter to families, signed by Seven Hills’ vice president, Cliff R. Cabral, said that a work stoppage could force the agency to suspend or reduce “several program offerings.”

“Our day services program will be limited to 24 residential participants,” Cabral said. Seven Hills has 76 residential clients, according to the latest data compiled by the state.

Efforts to reach Cabral or a UNAP spokesperson were not immediately successful.

Average entry-level wages for direct care workers in Rhode Island are $11.36 an hour, according to the most recent figure released by the Community Provider Network of Rhode Island, a trade association representing two thirds of the private providers of developmental disability services in the state.

Governor Gina Raimondo has proposed an incremental raise – estimated by BHDDH at an average of about 44 cents an hour – effective July 1.

In Connecticut, entry-level direct care workers must be paid a minimum of $14.75 houirly. The Connecticut legislature approved the raises last May, even though it had not yet acted on the state budget, to avert a strike that had been planned at that time by the Service Employees’ International Union (SEIU). The wage hikes became effective three weeks ago, on Jan. 1.

SEIU also has negotiated a $15 hourly minimum wage with Massachusetts for direct care workers in that state that went into effect July 1, 2018.

In the letter to families, Cabral said that “Seven Hills Rhode Island stands with our employees and will continue to advocate on their behalf for the living wage they deserve.”

He said Rhode Island’s system of care for adults with developmental disabilities still has not recovered from the General Assembly’s $24 million reduction in services in 2011. (Final figures on actual spending put the total over $26 million.)

Despite repeated and concerted advocacy, “our state representatives continue to place funding for individuals with developmental disabilities low on their priority list,”he said. The General Assembly’s inaction has significantly “compromised the sustainability of the current system,” which, Cabral said, has been weakened by below-market compensation and high staff turnover.

“Organizations such as ours have taken several painful measures throughout the past decade in an effort to ensure our fiscal sustainability, including liquidating assets and significantly reducing our administrative resources,” Cabral wrote.

While it has adhered to the “highest delivery standards possible,” Seven Hills cannot sustain its efforts indefinitely, Cabral said. He called on UNAP to join with management “to more productively direct our collective efforts toward lobbying for a substantial investment in this year’s state budget in order to adequately address the needs of those with developmental disabilities while ensuring a living wage for the remarkable individuals who support them.”

Seven Hills Rhode Island offers a variety of services for children, families and adults, with offices in Cranston and Woonsocket. Services for adults with developmental disabilities are based in Woonsocket, covering northern Rhode Island.

Rhode Island's DD Workers Would Get Estimated 44-Cent Pay Raise In Governor's Proposed Budget

By Gina Macris

Roughly 4,000 people who work with Rhode Islanders challenged by developmental disabilities would get an average pay increase estimated at 44 cents an hour effective July 1, according to Governor Gina Raimondo’s budget proposal for the 2020 fiscal year.

The average entry-level worker now makes $11.36 an hour, according to the Community Provider Network of Rhode Island, a trade association.

The wage increase would represent an additional $6.4 million in federal-state Medicaid funding, including $3 million in state revenue, according to an overall $9.9 billion budget Raimondo submitted to the General Assembly Jan. 17.

The budget plan also includes a 60-cent increase in the minimum wage, which would raise it from the current $10.50 to 11.10 an hour, if the General Assembly approves.

Other budget details involving developmental disability spending are still developing.

Donna Martin, Leader Of RI DD Provider Network, To Take On New Role At National Level

Donna Martin * Photo By Anne Peters

Donna Martin * Photo By Anne Peters

By Gina Macris

Donna Martin, the leader of a trade association representing two thirds of Rhode Island’s private providers of developmental disability services, will move to a new national advocacy post effective March 1.

Since 2005, Martin has worked as executive director of the Community Provider Network of Rhode Island (CPNRI), helping about two dozen members weather drastic cuts in state and federal Medicaid funding in imposed by the General Assembly in 2011, with rippling effects on services for adults with developmental disabilities that still linger.

Effective March 1, Martin will be Director for State Partnerships and Special Projects at the American Network of Community Options and Resources (ANCOR) – the national umbrella organization for CPNRI and 54 other trade associations representing other states.

In a recent memo to CPNRI members, Martin said she had not been looking for a new job because she loves her work in Rhode Island.

“It has been a remarkable experience which has been a major influence on my professional path,” Martin said.

The opportunity to do similar work on a national scale “very unexpectedly presented itself, and I feel it’s the right time for me personally and professionally to embrace it,” Martin said.

Until now, Martin has been a member of ANCOR’s Board of Directors, an elected position she said she has resigned to join the staff. She said she will not have to relocate to the Washington area to take the job.

In her new role, she said, she will lead the work on a federal grant ANCOR has received to help providers best prepare for implementing managed care initiatives and also support state associations and help build their participation in the national organization.

Martin said that during her 19 years at CPNRI – she joined the staff in 2001 – she has developed “really strong relationships with members” of the organization.

“I understand the commitment they have made” to provide the best possible support to a vulnerable population, “in spite of difficult financial conditions and a draconian regulatory environment,” Martin said.

“That’s what strengthened me in my work,” she said.

Martin said she would advise her successor to “continue strengthening relationships” with the state legislature, the executive branch of government, and others. “Focus on those relationships,” she said.

“We really do better when we’re building in the same direction,” Martin said.

Experts: Sustainable, Effective DD Systems Support Individuals; Don't Pigeonhole People In Groups

Mary Lee Fay and William Ashe * All Photos By Anne Peters

Mary Lee Fay and William Ashe * All Photos By Anne Peters

By Gina Macris

When it comes to reforming service systems for those with developmental disabilities, policy makers often succumb to a fundamentally flawed approach, one expert told a Rhode Island Senate study commission Jan. 8.

Policy makers tend to “think about people in groups, but not think about people as people,” said William Ashe at a meeting of the commission, looking into how Rhode Island supports private service providers.

Ashe has helped the state of Vermont evolve toward a system that puts the needs of the individual first.

He also has become familiar with Rhode Island as a consultant to the federal court monitor overseeing implementation of a 2014 consent decree requiring the state to transform its segregated service model to a system that is integrated with the community.

Asked his opinion of Rhode Island system, Ashe said that what he’s seen leads him to believe it is a “barrier” to people’s ability to live more “independent and connected lives.” Ashe said his opinion is his own, not that of the monitor.

His comment,, however, happened to coincide with findings of the U.S. Department of Justice in 2014, which said Rhode Island’s funding rules incentivized segregation.

Ashe is executive director of Upper Valley Services, which serves a single county in Vermont that is about half the size of Rhode Island. He addressed the commission along with Mary Lee Fay, executive director of the National Association of State Directors of Developmental Disabilities Services (NASDDDS).

Fay presented a broad swath of statistics on nationwide trends, but she nevertheless arrived at basically the same place as Ashe, talking about building services around relationships between persons with disabilities, their families and other important people in their lives.

How To Apply Best Practices To Rhode Island?

The session raised questions about how members of the commission will process the information in coming weeks and apply it to Rhode Island.

For private providers, Rhode Island has a fee-for-service system authorizing payments to providers only three months at a time, for a fixed menu of supports, requiring documentation of each worker’s daytime interaction with each client in 15-minute increments.

There is also a parallel state-run system of group homes that is exempt from the rules applied to private providers, even though they are all paid through the federal-state Medicaid program.

With all its emphasis on making private providers accountable for each minute of service, Rhode Island’s funding model has no definition or measure of what the services are supposed to accomplish in terms of stabilizing or improving people’s lives.

Successful outcomes were a recurring theme among the best practices described by Ashe and Fay.

L to R: Commission Members Deb Kney, Kevin McHale, Tina SPears, and Chairman Louis DiPalma

L to R: Commission Members Deb Kney, Kevin McHale, Tina SPears, and Chairman Louis DiPalma

After the meeting, the commission chairman, Sen. Louis DiPalma, D-Middletown, said the speakers offered a lot of “food for thought”. At the same time, he said, he wants to know more about the context of the successes in Vermont.

There, the predominant housing option is shared living in private homes – even for individuals who have challenging behavior - and services are tailored, or “bundled,” for a year’s time into individualized funding authorizations based on a person’s needs and goals.

Vermont’s system has been decades in the making, and DiPalma said he wants to know more about how the state got to where it is today. He said he expects commission members to begin airing their thoughts about the future of Rhode Island’s developmental disability system at the next meeting, yet to be scheduled, in late January.

Demographics, Economics Converge To Squeeze Human Services

Fay said that all the states are facing the same pressures, driven in part by the aging of the large population born after World War II.

Baby boomers have:

  • Increased the demand for the same type of direct care workers for the elderly as those who are employed in the field of developmental disabilities

  • Driven up the federal Medicaid and Medicare expenses, both entitlement programs with no cap.

Illustrating her point, Fay said that the fastest segment of the population is the elderly aged 85 and older. About 70 percent of that group needs some kind of assistance, she said.

Meanwhile, the expansion of Medicare and Medicaid, combined with last year’s tax cut, will lead to continuing debate in Congress about the future of these safety-net programs, Fay said.

At the same time, demographic projections point to a shortage of direct care workers. The group most likely to go into direct care work – women aged 18 to 55 – remains flat in demographic projections 20 years into the future.

Low wages are an issue with the current workforce, but Fay said the demographics indicate there just will not be enough workers to go around in the future. States “won’t be able to buy” their way out of the labor shortage, which will get much worse in the years to come, she said.

Instead, she said, states will have to “think” their way out of the crisis with a new approach; less reliance on 24-hour care and more supports built around families – and employment.

In Vermont, that approach seems to have paid off more often than not, according to Ashe.

Ashe’s agency is one of ten organizations in Vermont which have broad responsibilities within a designated area for serving adults with developmental disabilities, although there are several other specialized providers without geographic boundaries.

To receive immediate funding, individuals must meet high-priority standards as defined by law. They involve such factors as health and safety considerations or the need for care while both parents work outside the home.

In 2017, there were 238 people statewide on a waiting list for non-priority services, Ashe said.

Ashe’s agency, Upper Valley Services, covers Orange County, an area half the size of Rhode Island with a total population of 28,000, mostly spread out in towns and villages with populations of fewer than 1,500. There is one traffic light in the entire county, Ashe said.

Ashe said all service plans are individually designed and reviewed by a board which includes representatives of providers and consumers as well as state officials. The board’s recommendation is submitted to the state, which makes the final decision on services and funding.

Vermont and RI Differ on Funding Approaches, Wages

Vermont, like most other states, allocates funding on an annual basis. Rhode Island is the only state which funds services quarterly, Fay said.

And unlike Vermont, Rhode Island allocates funding first and expects providers to come up with an individual service plan that doesn’t exceed the budget.

Ashe credits the Vermont legislature for making a practice of anticipating an increasing caseload and funding to meet its needs, rather than forcing providers to dilute the supports for people they already serve to cover the new arrivals.

In 2017, Ashe said, 390 people benefited from the legislature’s new-caseload funding practice, he said.

Vermont’s designation of responsible agencies means they cannot reject anyone in their geographic area who meets the eligibility criteria for priority funding. As a one-stop shop for everyone, Ashe’s agency provides a broad range of services to about 200 individuals in its jurisdiction.

The starting wage at Upper Valley Services is $14 an hour and the annual turnover is 13 percent, significantly lower than the statewide turnover rate of about 23 to 25 percent. If Ashe must serve a particularly challenging client, he said, he has the authority to increase a worker’s hourly rate. Instead of $14, he said, he might pay $18.

Rhode Island providers pay an average entry wage of $11.36 an hour, according to a trade association, although some workers new on the job make minimum wage, which is $10.50 an hour. Job turnover in Rhode Island averages about 33 percent each year, although the rate varies among individual providers.

Nationwide, the average state-level rate of turnover is 46 percent, according to Fay.

In Vermont, the average cost of services per person is $60,037, Ashe said, slightly higher than in Rhode Island.

In a statewide population of just over 600,000, Vermont supports about 4,500 people with intellectual or developmental disabilities, about the same number as in Rhode Island, with a population of slightly more than one million.

Individuals have control over their service plans and may move money from one category to another, manage part or all of their services themselves, or let the agency be the service manager.

Employment And Housing

Among the clients of Upper Valley Services, 48 percent have jobs, averaging 8 hours a week, Ashe said.

Nationwide, the employment rate for adults with developmental disabilities is 19 percent, according to Ashe and Fay. Rhode Island’s rate is above the national average, but an exact figure was not immediately available.

Fay emphasized that employment is important not only for income, but also because a job provides autonomy and leads to connections with other people.

Shared living is one of five housing options in Vermont that, taken together, offer a broad range of supervision, up to and including intermediate care with a maximum of six residents in one facility.

The annual stipend for shared living is about $32,500. Ashe said he expects one responsible adult in the family to stay at home and not take an outside job.

Shared living should be viewed as part of a relationship, Fay said, not “foster care” or a “placement” that has nothing to do with the participants’ connections to each other.

24-Hour Case Management Key To Success

Ashe said the core of his operations is a network of case managers, each one with a caseload of about 14 people, who are on call 24 hours a day.

Case managers may arrange respite care for shared living providers or provide additional in-home supports, among a broad range of activities that include diffusing a crisis experienced by someone on their caseload.

In most instances, Ashe said, “the problem is not the person but the services around that person.”

His agency focuses on “re-building the support system to help that person stay in the community,” Ashe said.

In Vermont in 2017, there were five psychiatric admissions among adults with developmental disabilities, according to figures provided by Ashe.

Responding to a question from Rebecca Boss, Director of the Rhode Island Department of Behavioral Health Care, Developmental Disabilities and Hospitals, Ashe described the history of a crisis team begun in 1991 and crisis training for direct care staff in the field that has helped keep the number of psychiatric hospitalizations low.

Lending a national perspective, Fay said states are learning not to bring families to the table and expect them to speak a bureaucratic language to ask for a specific program, but instead to discuss ‘what is happening in your life and how can we support you?’’

Sometimes, families accept more services than they need, because they fear they will not be able to get them in the future, Fay said.

“I have visited states where people say, ‘I’ve taken a service not because I need it, but because if I say no, I’m afraid I won’t get access to anything in the future,’ “ Fay said.

States have to build trust in families, she said. Systems have to be designed to create an underlying confidence among families that the support will be there as the family’s needs change, she said.

Fay said “there isn’t a system out there that has it down perfectly,” but “states that do it well succeed because they have partnerships” with their communities.

To see an outline of Fay’s full presentation, click here.

To view a video of the commission meeting, click here. Look for an icon labeled with the date 1-8-19 and a title that reads “Special Legislative Study Commission To Evaluate Project Sustainability.” Note that some browsers may need Flash to play the video.

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

By Gina Macris

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

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

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

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

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

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

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

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

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

  • are familiar with the way different states manage services

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

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

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

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

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

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

Sustainability+commission+Dec.+meeting+main+pic+cropped+.jpg

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 House Speaker And Senate President Both Support Higher Pay For DD Workers

By Gina Macris

The top two leaders in the Rhode Island General Assembly say they support the idea of increasing the pay of workers who provide services for adults with developmental disabilities.

“I am very supportive of the developmentally disabled community,” said House Speaker Nicholas A. Mattiello, “and I believe those people who care for them should receive a rate increase. The House of Representatives will certainly strongly consider such a request in next year’s budget deliberations.”

Senate President Dominick J. Ruggerio is likewise supportive, a spokesman said.

“The Senate President supports increasing wages for providers of services for individuals with intellectual and developmental disabilities,” Ruggerio’s spokesman said, adding that “Senator Louis DiPalma (D-Middletown) has provided extraordinary leadership on this issue, including a proposal to gradually increase wages for providers, and the Senate President supports his initiative.”

Whether Governor Raimondo will consider increasing funding for the private system of care for adults with developmental disabilities in her budget proposal for the next fiscal year remains to be seen. Her office has not responded to a Nov. 20 email seeking comment on possible pay increases.

Developmental Disability News asked the state’s leaders whether they would consider re-visiting reimbursement rates after Mark Podrazik, the president of the healthcare consulting firm Burns & Associates, told a Senate commission chaired by Senator DiPalma that a review of pay hikes is warranted.

DiPalma’s commission is studying the current fee-for- service system, called Project Sustainability, which Burns and Associates was instrumental in developing seven years ago. While the consultants took the lead in the project design, the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) disregarded the actual reimbursement rates the firm proposed, instead reducing most of them by 17 to 19 percent before forwarding the final version of the plan to the General Assembly in the spring of 2011.

Burns & Associates recommends a rate overhaul once every five years, Podrazik told the commission Nov. 13. After nearly seven and a half years, “it’s past time,” he said.

Podrazik testified that Project Sustainability was shaped by the state’s drive to control costs, but by that measure, the system has failed.

The developmental disability budget repeatedly has run over the limits set by the General Assembly, and the gaps have only increased during the last few years as the U.S. District Court has enforced a federal civil rights agreement with the state that requires Rhode Island to integrate adults with developmental disabilities in their communities.

That approach, necessary to correct violations of the Americans With Disabilities Act, costs more than the reliance on sheltered workshops and segregated day centers codified in Project Sustainability.

DiPalma, the chairman of the Project Sustainability commission, takes exception to a view that the developmental disability services program has been overspending.

“If the budget was unrealistic from the get-go, you’re going to exceed that budget,” he said at the commission meeting Nov. 13. He has studied developmental disability service budgets for ten years, he said, and none of them have been realistic.

Increasing wages for direct care workers “needs to become a priority” for a number of reasons, DiPalma said in a telephone interview. “If it’s a priority, we’ll find the money.”

In 2016, DiPalma called for a $15 hourly wage for direct care workers by July 1, 2021, but now he says “we need to get there faster.”

And he indicated he no longer believes $15 is enough. For example, Massachusetts, an easy commute from many places in Rhode Island, is already paying that amount to members of the Service Employees Union International who work with persons with disabilities. A bill signed by Governor Charles Baker in June put Massachusetts on a path to a $15 minimum wage in five years.

At one time, those who worked with adults facing intellectual and developmental challenges had full time jobs with benefits. But Project Sustainability resulted in drastic cuts to wages and benefits that destabilized the workforce, forcing many to leave the field or to take two or three jobs to make ends meet.

Turnover averages about one in three workers a year, and employers are unable to fill one in six jobs, according to the Community Provider Network of Rhode Island, a trade association. At the same time, the demands of the consent decree require more highly skilled staff.

Since July 1, 2016, the General Assembly has enacted two relatively small pay increases for direct care staff and their supervisors at private agencies serving adults with developmental disabilities, but the average pay, $11.36 an hour, is still two dollars less than the hourly rate of $13.97 which Burns & Associates recommended in 2011.

Healthcare Consultant Says "It's Past Time" For RI To Revisit Rates It Pays For Private DD Services

Boss DiPalma Quattromani Kelly Donovan Deb Kney Kevin McHale.jpg

From foreground, on the right, Rebecca Boss, Louis DiPalma, Peter Quattromani, Kelly Donovan, Deb Kney, and Kevin McHale, all members of the Project Sustainability Commission. DiPalma is chairman. All photos by Anne Peters

By Gina Macris

Rhode Island is overdue in undertaking a comprehensive review of rates it pays private providers of services for adults with developmental disabilities, according to a top official of a healthcare consulting firm who helped develop the existing payment structure seven years ago.

Mark Podrazik

Mark Podrazik

“It’s past time,” said Mark Podrazik, president and co-founder of Burns & Associates. He said the firm recommends an overhaul of rates once every five years. Podrazik appeared Nov. 13 before a Senate-sponsored commission which is evaluating the way the state organizes and funds its services for those facing intellectual and developmental challenges.

The commission chairman, Sen. Louis DiPalma, D-Middletown, had invited Podrazik to help the 19-member panel gain a deeper understanding of the controversial billing and payment system now in place before it recommends changes intended to ultimately improve the quality of life of some 4,000 adults with developmental disabilities.

Burns & Associates was hired by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) in 2010 to develop and implement Project Sustainability, a fee-for-service system of payments to hold private providers accountable for the services they deliver and give consumers more flexibility in choosing what they wanted, Podrazik said.

In answering questions posed by commission members, Podrazik made it clear that the final version of Project Sustainability was shaped by a frenzy to control costs. The state ignored key recommendations of Burns & Associates intended to more equitably fund the private service providers and to protect the interests of those in the state’s care.

Podrazik said that overall, Burns & Associates believed the Division of Developmental Disabilities (DDD) had neither the capacity or the competence implement Project Sustainability at the outset or to carry out the mandates to companion civil rights agreements with the U.S. Department of Justice reached in 2013 and 2014.

“I think people were a little shocked” by the new federal requirements to integrate day services in the community and by the question of “who was going to do it,” Podrazik said of the DDD staff at the time.

DDD also had an antiquated data system that ill served Project Sustainability and the separate demands for statistics imposed by a federal court monitor overseeing the consent decrees.

Podrazik said the aged IT system was the biggest problem faced by Burns & Associates.

Asked whether funding changed to implement the civil rights agreements, Podrazik said he didn’t recall that there were any significant changes, if any at all. Burns & Associates ended its day-to-day involvement with BHDDH in Feb. 2015, when Maria Montanaro became the department director. (She has since been succeeded by Rebecca Boss, and there has been a complete reorganization and expansion of management in DDD. A modern IT system recently went online.)

Between the fall of 2015 and early 2016, Burns & Associates had a separate contract with the Executive Office of Human Services, which asked for advice on cutting supplemental payments to adults with developmental disabilities.

While Project Sustainability was supposed to give consumers more choice, the U.S. Department of Justice found just the opposite in a 2013 investigation.

DOJ lawyers wrote in their findings that “systemic State actions and policies” directed resources for employment and non-work activities to sheltered workshops and facility-based day programs, making it difficult for individuals to get services outside those settings.

“Flexibility” Functioned As Tool For Controlling Costs

At the meeting Nov. 13, Andrew McQuaide, a commission member and senior director at Perspectives Corporation, a service provider, suggested that features of Project Sustainability ostensibly designed to encourage flexibility and autonomy for those using the services functioned in reality as mechanisms to control costs.

Podrazik said, “In my heart of hearts, I think everybody wanted more flexibility,” but “then the financial constraints were imposed in such a way that the objectives could not necessarily be met.”

“We were not hired to cut budgets,” Podrazik said. Going into the project, “we did not know what the budget was” for Project Sustainability.

He said Burns & Associates recommended fair market rates for a menu of services under the new plan. For example, it proposed an hourly rate for direct care workers was $13.97. But BHDD refused the consultants’ advice to fight “aggressively” for this level of funding, Podrazik said. With the budget year that began July 1, 2011, BHDDH recommended, and the General Assembly adopted, a rate of $12.03 an hour, nearly two dollars less.

The state had the option to change the rate effective Oct. 1, 2011, and it did, dropping the hourly reimbursement for direct care workers to $10.66 to absorb last-minute cuts made by the General Assembly in the developmental disabilities budget for the fiscal year that had begun July 1. (Rates have increased slightly since then. The average direct care worker made about $11.36 an hour in early 2018.)

“I understood why the department (BHDDH) was doing what they were doing, because they were getting an incredible amount of pressure on the budget – so much so that they were getting their hand slapped when they were over,” Podrazik said.

“From the outside coming in, there was a lack of confidence that BHDDH could actually administer a budget that came in on target, so that there was an intense scrutiny to keep the budget intact. It did not help that that they were cut and that there were no caseload increases (in the budget) for multiple years,” Podrazik said.

“They were behind the eight-ball before anything was contemplated,” he said.

Louis DiPalma, Rebecca Boss

Louis DiPalma, Rebecca Boss

DiPalma, the commission chairman, saw the situation from a different perspective: “Someone will say the agency exceeded the budget, but if it was unrealistic from the get-go, you’re going to exceed that budget.”

As a legislator, DiPalma said, he has looked at developmental disability service budgets for ten years, and there hasn’t been one that was realistic.

“Right,” Podrazik replied, adding that funding for developmental disabilities had been declining from year to year in Rhode Island, even before Burns & Associates was hired for Project Sustainability.

Podrazik said he hasn’t been following developmental disabilities in Rhode Island during the last few years, but “somebody should look at the rates, if for no other reason” than “we’re in an economy that’s very different than it was in 2010.” He cited health care costs and a move toward “$15 an hour wages.”

“It’s a whole different landscape,” he said.

Consultants Recommended Eliminating Separate State-Run DD System

In 2011, with Project Sustainability facing a funding shortage even before it got off the ground, Burns & Associates recommended that BHDDH get more money to support the services of private agencies by eliminating – gradually – the state-run developmental disabilities system, called Rhode Island Community Living and Supports (RICLAS.)

At the time, average per-person cost for a RICLAS client ran about three times more than the average in the privately-run system. All the RICLAS clients could eventually be transferred to private providers, Burns & Associates advised the state.

“This recommendation was shut down immediately, with the reason being a protracted fight with the unions,” Podrazik said in prepared remarks.

Burns & Associates then recommended lowering the reimbursements to RICLAS. “This was also shut down,” Podrazik wrote.


“It was apparent early on that there were funds to be redistributed between RICLAS and the Private DD system, but there was no appetite to do so. It is unclear exactly where this directive was coming from within state government, but that was the directive given” to Burns & Associates, Podrazik wrote.

Providers Expected To Maintain Same Service For Reduced Pay

Commission members asked Podrazik whether anyone at Burns & Associates or state government believed that it was possible for private service providers to absorb the rate reductions written into Project Sustainability, given the fact that about half the agencies were already running deficits before the program was enacted.

McQuaide quoted from the memo that BHDDH sent the General Assembly in May, 2011, explaining its approach to implementing Project Sustainability.

“We did not reduce our assumptions for the level of staffing hours required to serve individuals,” the memo said. “In other words, we are forcing the providers to stretch their dollars without compromising the level of services to individuals,” the memo said.

McQuaide asked, "Did anyone actually think that was possible?”

“I don’t know,” Podrazik replied, but he remembered meetings in which participants expressed sentiments similar to the quotation highlighted by McQuaide.

Given the budgetary restrictions, Podrazik said, he favored reducing rates rather than cutting back on services or creating a waiting list for services.

Podrazik said Burns & Associates was hired to deal with certain problems; not to review services for adults with developmental disabilities top to bottom.

Assessment Used For Funding Became Controversial

Asked to change the assessment used to determine each person’s need for support, Burns and Associates recommended the Supports Intensity Scale, or SIS, and advised it should be administered by an entity “other than the provider or the state to avoid the perception of gaming the system,” he said.

The state went forward with the SIS, linked it to funding individual authorizations, or personal budgets for clients, and assigned the administration of the assessment to the state’s own social caseworkers.

The fact that the SIS is administered within BHDDH has been criticized by the DOJ and an independent federal court monitor. With federal scrutiny on BHDDH, and numerous complaints from families and providers that the SIS scores were manipulated to cut costs, the department switched to a revised SIS assessment and retrained all its assessors in November, 2016.

Funding Authorized Three Months At A Time To Control Costs

According to Podrazik, Burns & Associates recommended each client’s funding authorization – or personal budget – be awarded on an annual basis, to allow individuals to plan their lives and providers to look ahead in figuring out expenses.

But the state insisted on the option to change reimbursement rates on a quarterly basis as a means of managing costs more closely within a fiscal year. That was the feature of Project Sustainability which enabled BHDDH to impose two consecutive cuts on providers, once on July 1, 2011, and a second time on Oct. 1, 2011. Since then, rates have increased incrementally.

At the hearing, Podrazik illustrated the difference between a yearly authorization and a quarterly one in the life of a consumer.

“Maybe someone goes away for the month of August,” he said. If that person has a quarterly authorization, the money for services in August reverts to the state. But with an annual authorization, the funding can be used for the person’s benefit during another month of the year.

Podrazik agreed with a commission member, Peter Quattromani, CEO of United Cerebral Palsy, that quarterly authorizations compromise the flexibility intended to be part of the design of Project Sustainability.

Podrazik said he knows of no other state that makes quarterly authorizations for developmental disability services.

DiPalma, the commission chairman, asked if there was any thought given to the impact of a requirement that providers document how each staff person working during the day spends his or her time with clients, in 15-minute blocks.

Podrazik said, “I don’t think people thought the impact would be negligible, but the desire for accountability outweighed that, and I fully endorsed them.”

Project Sustainability decreased overhead costs to private providers but did not offset those cuts with allowances for hiring the personnel necessary to process the documentation.

When DiPalma thanked Podrazik for his time, Podrazik quipped that Rhode Island was “the last place I thought I’d ever be.”

“The Rhode Island project wore me down, so I’m working with hospitals these days,” Podrazik said.

He said he came back to Rhode Island because DiPalma was very persuasive and because he wanted to “set the record straight” on the involvement of Burns & Associates with Project Sustainability.







Burns & Associates President To Speak To RI Senate Commission Studying DD Reimbursement

A special commission of the Rhode Island Senate on “Project Sustainability” will meet Tuesday, Nov. 13 to hear a presentation from the president of a healthcare consulting firm which helped the state develop its current fee-for-service Medicaid reimbursement system for private providers who serve adults with developmental disabilities.

The speaker, Mark Podrazik , is the president and co-founder of Burns & Associates, an Arizona-based company which advised the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) on recommendations BHDDH made to the General Assembly. The legislature made the final decisions about the reimbursement model, which was enacted in 2011.

Burns & Associates was paid nearly $1.4 million for their work developing “Project Sustainability” and analyzing its fiscal impact between 2010 and 2016, according to state records.

Tuesday’s public meeting will begin at 3 p.m. in the Senate Lounge of the State House. Public comment is invited at the end of the session, according to the commission chairman, State Sen. Louis DiPalma, D-Middletown. The commission includes 19 members from state government and a cross-section of the developmental disability community. Among them are two consumers and representatives of advocacy groups and service providers.

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.

Tim Vogt, Emerging Leader in Building Inclusive Communities, To Speak in Rhode Island Nov. 3

Tim Vogt Photo courtesy of Tim Vogt

Tim Vogt Photo courtesy of Tim Vogt

Registration information has been corrected.

By Gina Macris

Tim Vogt, a nationally-recognized expert in building inclusive communities, will speak at a free seminar in Rhode Island November 3 that will be sponsored by several organizations that advocate for Rhode Islanders with intellectual and developmental disabilities and their families.

Vogt is executive director of Starfire in Cincinnati, Ohio, where he has developed ways of making connections among individuals that rely on mutual interests and collective strengths while working around disabilities.

“His visionary message is to maximize the positive; minimize the negative,” said Connie Susa, executive director of PLAN RI, one of the sponsoring organizations. Vogt blogs at https://cincibility.wordpress.com/

The November 3 seminar will be at the Dean’s List Academy, 25 Esten Ave., Pawtucket. Check-in will begin at 9 a.m., with the presentation scheduled from 9:30 to 12:30. Anyone planning to attend is asked to register in advance at https://www.eventbrite.com/e/claiming-a-corner-of-community-tickets-51383200536  Additional sponsors are RI FORCE, the Rhode Island Developmental Disabilities Council and the John E. Fogarty Foundation.

The Community Provider Network of Rhode Island, a trade association representing two dozen private organizations that serve adults with developmental disabilities, is a co-sponsor of Vogt’s visit to Rhode Island, Susa said.

RI Project Sustainability's Plan For Enhanced DD Services Was "Cover" For Budget Cuts - Testimony

By Gina Macris

Louis DiPalma, Chairman of Project Sustainability Commission Photo By Anne PETERS

Louis DiPalma, Chairman of Project Sustainability Commission Photo By Anne PETERS

Project Sustainability, introduced in Rhode Island in 2011 as a method for enhancing individualized services for adults with developmental disabilities, instead has diminished the quality of their lives.

That assessment set the stage Oct. 9 for deliberations of a Senate-sponsored commission charged with studying Rhode Island’s past and present system of developmental disability services, with the aim of designing a better future.

At the same time, the chairman of the 19-member panel, Sen. Louis DiPalma, D-Middletown, emphasized that the purpose of the commission is not to assign blame but to learn from the past and present to figure out how to best move forward. The commission must report to the Senate by March 1.

Project Sustainability was “a well-manicured statement to cover up” cuts in funding and services, said Tom Kane, CEO of AccessPoint RI, one of three dozen private agencies serving adults with developmental disabilities in Rhode Island.

Kim Einloth Testifies

Kim Einloth Testifies

Project Sustainability had a “major impact on the quality of service we were able to deliver,” said Kim Einloth, a senior director at Perspectives Corporation, one of Rhode Island’s largest service providers. She said the community-based program of day services was forced to put people in large groups, lay off specialists like occupational and speech therapists and discontinue consulting services with physical therapists.

Gloria Quinn, executive director of West Bay Residential Services, said she noticed immediately that the disabilities system was “demoralized, decreased and degraded” when she returned to Rhode Island after a nine-year absence in 2013. When Quinn moved out of state in 2004, she said, Rhode Island was one of the top-ranked states nationwide for its programs for adults with developmental disabilities. Quinn sits on the commission.

In a meeting that lasted about 90 minutes, the commission covered a broad range of topics related to Project Sustainability and the controversies linked to it: inadequate overall funding, depressed worker wages, and an assessment used – or misused - to determine individual allocations for services.

The planning and execution of Project Sustainability has been well documented, primarily by Burns & Associates, healthcare consultants hired by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) in 2010.

DiPalma said that from what he’s seen, Burns & Associates was “charged with providing a plan, and the state chose to do something different.”

Rebecca Boss, the current director of BHDDH, reviewed the history of Project Sustainability, designed to bring uniformity to funding for specific services and enable families to make informed choices about services. Project Sustainability aimed to use data gathered through new funding methods to create incentives for services to be delivered in the most integrated setting possible, she said.

“Change is hard, and even with perfect planning, it would not result in everyone’s needs being met,” Boss said.

“I think everyone knows” that the current administration – including Governor Gina Raimondo, Kerri Zanchi, the Director of Developmental Disabilities, herself, “is committed to working with our stakeholders” to figure out “where do we go from here,” said Boss.

“Many may have different views of history, as is often the case,” said Boss, a commission member.

Kane, of AccessPoint, said he didn’t want his anger about Project Sustainability to reflect the way he regards the current administration. The working relationship service providers now have with the BHDDH administration, he said, is “better than we’ve had in a very, very long time.”

Tom Kane Chats After The Commission Meeting

Tom Kane Chats After The Commission Meeting

The plans for Project Sustainability “talked about individualizing services and moving toward person-centeredness and all of the lovely buzz words,” said Kane, but the rhetoric really described “a system we already had that got dismantled.”

While Project Sustainability talked about individualization, inclusion and community support, the regulations governing developmental disability services “were always about center-based group activity.”

“Finally, under this administration, the regulations have been put forward that will put back the flexibility we need,” Kane said. The new regulations have passed a public comment period and are to be finalized by the end of the year.

Funding, however, has a long way to go to support the kinds of changes providers, families, and consumers want, by all accounts.

Commission member Andrew McQuaide zeroed in on historical funding of developmental disability services.

McQuaide said that developmental disability spending had been on a downward trend in Rhode Island since 1993.That was the year before the last residents left the Ladd School, the state’s only institution for those with intellectual challenges.

Citing According to Burns & Associates, McQuaide said:

  • Between 1993 and 2008, Rhode Island’s expenditures for developmental disabilities decreased by 29.5 percent at the same time the national rate increased by 17.8 percent.

  • Rhode Island is only one of 14 states to report a reduction between 2007 and 2009 in per-person expenditure, a decrease of 4 percent at the same time the national trend registered a 5.6 percent increase.

McQuaide also said that anecdotal information indicates about half the state’s private providers were reporting operating deficits in 2009, ill-preparing them to absorb the additional funding cuts that came along with Project Sustainability.

An overview prepared by the Senate Fiscal Office showed that actual spending on developmental disabilities, including both state and federal Medicaid funds, dropped $26.2 million in the fiscal year that began July 1, 2011 when compared to spending during the previous 12 months.

The overview shows that, adjusted for inflation, the current budget still has not caught up to the spending reach of the developmental disability system in the year before Project Sustainability was enacted.

Chart courtesy of RI SENATE FISCAL OFFICE

Chart courtesy of RI SENATE FISCAL OFFICE

Prior to Project Sustainability, private agencies negotiated an annual sum for each individual in their care.

The new system generated standard reimbursement rates for each of 18 different services that agencies were authorized to provide.

Kane noted that from the outset, the funding for Project Sustainability was not designed to cover all of the actual costs of private providers, almost all of whom had submitted extensive financial data to the state.

A BHDDH memo for rate-setting that the department sent to the General Assembly noted that the reimbursement rates eventually adopted for Project Sustainability were 17 to 19 percent below “benchmark rates” which Burns & Associates calculated from the median wage for direct care jobs - $13.97 an hour.

The state could not afford more, the memo said, citing the poor economy at the time.

The memo said the lower reimbursement rates were calculated by reducing the allowances for fringe benefits for workers and in some cases, cutting transportation and program expenses.

Kane, who is familiar with the rates in the memo and other Burns & Associates documents, said providers were “actually told in a meeting, ’We’ll see what this (the benchmark wage) costs but we won’t actually bring this to the legislature because they’ll laugh at us.’

“I don’t understand why the expenditure of well over a million dollars on Burns & Associates wasn’t taken seriously enough” to put forward actual expenditures “and let the legislature decide whether it was appropriate,” Kane said.

McQuaide, meanwhile, quoted from the memo. “We did not reduce our assumptions for the level of staffing hours required to serve individuals. In other words, we are forcing the providers to stretch their dollars without compromising the level of services to individuals,” the memo said. See related article

McQuaide said the experience of the last seven years has shown that it was a “fiction” to think the system of private providers would be forced to implement Project Sustainability without compromising services.

The state has a separate system of group homes for adults with developmental disabilities which has not been subject to rules or the pay cuts that came with Project Sustainability. Instead, the workers are unionized state employees with full benefits.

Donna Martin and Andrew McQuaide

Donna Martin and Andrew McQuaide

In the privately-run system, McQuaide said, the wages paid direct care workers still don’t reach the original $13.97 per hour “benchmark”, or median-pay rate, calculated by Burns & Associates.

The most recent data available indicates that the average entry wage for direct care workers is $11.37 an hour. It comes from a survey of member agencies of the Community Provider Network of Rhode Island (CPNRI) conducted last February, according to Donna Martin, executive director of the trade association, which represents about two thirds of service providers in Rhode Island. Martin said she is in the process of updating the figure.

Martin, a commission member, told the panel that CPNRI has met with the BHDDH leadership and representatives of Governor Raimondo’s office and the Office of Management and Budget to review current provider reimbursements in comparison to an extensive menu of rates envisioned by Burns & Associates in planning Project Sustainability. BHDDH, OMB, and the Governor have already planning a budget proposal for the next fiscal year.

DiPalma said Burns & Associates originally wanted to advance a “competitive” average wage of $15.46 an hour.

Addressing wage inequities will be a critical focus of the commission’s work, he said. Two years ago, DiPalma started a campaign to raise direct care wages to $15 an hour over five budget cycles. Massachusetts already pays its direct care workers a $15 hourly rate, and many Rhode Islanders find they don’t have to move to take advantage of these higher-paying positions at agencies that are an easy commute from their homes, DiPalma said.

Another source of rancor over the last several years has been the assessment used to determine individual funding levels under the terms of Project Sustainability – the Supports Intensity Scale (SIS), which was updated in November, 2016.

Kane has said data compiled by Burns & Associates indicate the original version of the SIS was used to cut individual funding. See related article

A. Anthony Antosh

A. Anthony Antosh

Even though the SIS has been revised, the state’s top academic researcher in developmental disabilities, A. Anthony Antosh, told the commission that using the SIS as a funding tool violates the original intent of the instrument as an aid for professionals designing individual programs of support for persons with disabilities.

Antosh, a commission member, is the retiring Director of the Sherlock Center on Disabilities at Rhode Island College.

His comments apparently prompted Kane to recall another moment in a Project Sustainability planning meeting in which Burns & Associates’ human services partner praised the multi-faceted assessment providers were using at the time to figure out how much funding a particular person needed. In each case, the assessment took into account intellectual capacity, responses in various situations and potential risks.

That Burns & Associates partner, the Human Services Research Institute of Oregon, wrote a memo to the General Assembly saying that “ ‘resource allocation’ should never be thought of as mostly an exercise involving the assessment and simple service delivery.”

Policy makers should also take into account the goals of the programs, such as increasing community integration or increasing employment, before determining the array of services and rate schedules, HSRI said.

“Data collected by a measure such as the SIS is necessary,” the memo said, “but certainly not sufficient.”

The memo was condensed before it reached the General Assembly, and the recommendation against using the SIS alone to determine individual funding was eliminated,

Providence Woman Featured In "Intelligent Lives," New Documentary Film On Inclusion

By Gina Macris

“Intelligent Lives,” a new documentary film, profiles Rhode Islander Naomie Monplaisir and two other adults with intellectual disabilities whose personal stories defy conventional assumptions and help the filmmaker deliver a strong rebuke of standard IQ testing.

Naomie Monplaisir Photo courtesy of Dan Habib

Naomie Monplaisir Photo courtesy of Dan Habib

The Rhode Island premiere of the film will be free and open to the public at Rhode Island College on Thursday, Oct. 11, at 5:30 p.m., with the filmmaker, New Hampshire-based Dan Habib, leading a panel discussion after the screening.

Academy Award-winning actor Chris Cooper narrates the documentary, which, in addition to Monplaisir, profiles a Massachusetts high school student making the transition to adulthood and a man who works as a teaching assistant at Syracuse University.

Monplaisir, now 27, changed course in her life because of the landmark Olmstead consent decree in Rhode Island, the first settlement in the nation which enforces the integration mandate of the Americans With Disabilities Act specifically for daytime services for adults with developmental disabilities.

For Monplaisir, a Providence resident who enjoys singing and dancing at her Haitian Creole church, the 2014 federal consent decree has meant a chance to pursue the job of her dreams rather than being shunted off to a sheltered workshop after high school.

Monplaisir will participate in the panel discussion after the screening, along with her brother, Steven Monplaisir, and Kiernan O’Donnell, Associate Director for Vocational Services at the John E. Fogarty Center of North Providence. The Fogarty Center has provided Monplaisir with supported employment services.

“People with intellectual disabilities are the most segregated of all Americans,” said Habib, who is affiliated with the Institute on Disability at the University of New Hampshire.

Nationally, he said, “only 17 percent of students with intellectual disabilities are included in regular education. Just 40 percent will graduate from high school. And of the 6.5 million Americans with an intellectual disability, barely 15 percent are employed.”

In Rhode Island, the percentage of adults with intellectual or developmental disabilities working in integrated settings was above average, at 27 percent last March, according to the latest Annual Day and Employment Survey of the Sherlock Center on Disabilities at Rhode Island College.

But that figure is dramatically below the general population’s participation rate in the national labor force, which was 68 percent last March, Habib said.

The screening, at the Nazarian Center for the Performing Arts in Sapinsley Hall, will be hosted by the Sherlock Center, which requests advance registrationfor those planning to attend. To register, go to http://www.ric.edu/sherlockcenter/ilevent.html

RI General Assembly Candidates In Newport County Say They Support DD Worker Raises

By Gina Macris

A call for higher pay for direct service workers who assist persons with developmental disabilities ran like a thread through a General Assembly candidates’ forum in Newport Oct. 3, with several speakers saying better wages will help stabilize the system and improve quality.

Legislators urged an audience of about 25 to make their names and faces known at the State House to press this and other concerns when the General Assembly convenes again in January.

State Sen. Louis DiPalma, D-Newport, Middletown, Little Compton and Tiverton, said that Rhode Island cannot transform services for adults with developmental disabilities on a budget that has the same buying power as it did in 2011.

In Fiscal Year 2011, Rhode Island spent about $242 million on developmental disabilities, DiPalma said. Adjusted for inflation, using the consumer price index, that’s equivalent to the $272 million currently budgeted for the state Division of Developmental Disabilities.

DiPalma offered a glimpse of the work ahead for a Senate-sponsored commission that will convene Tuesday, Oct. 9 to begin discussing the current fee-for-service reimbursement system for private providers of supports to adults facing intellectual and developmental challenges.

The reimbursement system, called “Project Sustainability,” was inaugurated in Fiscal Year 2012, along with cuts that slashed spending on developmental disabilities from $242.6 million to $216.5 million, according to state figures.

Since 2014, the state has been under pressure from the U.S. Department of Justice to end an overreliance on sheltered workshops and other segregated care for adults with developmental disabilities, and instead emphasize competitive employment and integrated non-work activities to comply with the Americans With Disabilities Act.

At the Oct. 3 forum, DiPalma said the current practice of awarding individual funding authorizations according to the “level” of a person’s lack of independence is “just wrong” when successful appeals of individual awards have resulted in supplemental expenditures of up to $25 million a year for legitimate additional services on a case-by-case basis.

DiPalma, the chairman of the commission, said the panel will review every aspect of “Project Sustainability - what it is, how did we get there, and where do we want to go? What are the gaps?” The commission will meet at 3:30 p.m. Oct. 9 in Room 313 of the State House.

Rep. Deborah Ruggiero, D-Jamestown and Middletown, who has six years’ experience on the House Finance Committee, said people with disabilities want the exact same thing that people without disabilities seek – meaningful lives.

“But I’m not sure it’s a one-size-fits-all model, “ she said. “The whole system needs a good 20,000-foot overview.”

“It’s not right that people can make more money at McDonald’s than they can supervising people with intellectual and developmental disabilities, “ Ruggiero said.

One consequence of “Project Sustainability” has been double-digit cuts in wages, which also have derailed benefits such as health insurance, and opportunities for career advancement offered workers by private service-provider agencies. The wage cuts destabilized an entire workforce, which now averages a turnover rate of at least 33 percent a year.

Rep. Dennis Canario, D-Portsmouth, Tiverton and Little Compton, himself the father of someone with developmental disabilities, said that people generally “don’t understand the detrimental effect” of staff turnover on the individuals they assist.

Workers must have “expertise” to keep their clients on an even keel, particularly in some cases where clients are “very involved,” He said that It takes “expertise to turn situations around” or to keep individuals focused on the job at hand.

“When they get up in the morning, they need something to look forward to,” he said of people with disabilities. “We need to provide that type of day to our friends with intellectual and developmental disabilities. Together we can come up with the answers and solutions.”

“Pay inequity is a serious problem,” Canario said. “You’re not going to attract someone highly qualified” for $11 an hour,” he said. (The average pay for direct support workers is slightly less than $11.50 an hour.)

Connecticut and Massachusetts “are way ahead of us,” he said.

DiPalma noted that Massachusetts has already negotiated a minimum $15 hourly wage for direct care workers who are members of the Service Employees International Union. Many of the workers in nearby Massachusetts towns have trained in Rhode Island and still live in Rhode Island, he said.

DiPalma has sponsored a campaign to get a $15 hourly wage in five years, but it stalled in the last session of the General Assembly, when the developmental disability system was threatened with an $18 million cut in services. In the end, the legislature restored the status quo, but no gains were made.

Nevertheless, advocates deserve a “great round of applause for restoring that funding,” said Sen. Dawn Euer, D-Jamestown and Newport. She and others, including Rep. Kenneth Mendonca, R-Portsmouth and Middletown, urged them to keep it up.

Sen. James Seveney, D-Portsmouth, Bristol and Tiverton, signaled that he and his colleagues will again be pushing for a wage increase for direct care workers in the 2019 General Assembly session.

With the 2014 federal consent decree driving more integrated employment and community –based activities, the state must invest in additional transportation to make those opportunities a reality, said Euer. Others echoed her concern about transportation.

Terri Cortvriend, the Democratic candidate for Mendonca’s seat in the House, said she wanted to learn more about developmental disability services, particularly whether individuals and families are satisfied with the greater emphasis on competitive employment. Cortvriend currently chairs the Portsmouth School Committee.

Susan Vandal, a member of the audience, said families who have a child with a developmental disability want a system that allows them a “single point of entry” that begins early intervention for infants and toddlers and takes them seamlessly through the school years into adult services.

Parents must now jump through too many hoops, particularly in the transition from school to adult services, she said. Transition from high school to the adult system is also one of the prime concerns of an independent court monitor overseeing implementation of the consent decree.

Addressing the audience, Canario said legislators “need your help so we can make recommendations on how to fix a broken system.”

“A lot of parents are in the dark and don’t know what to do,” he said. Sometimes they are misled, with plans for services that are on paper but don’t become reality.”

The forum held at the Newport campus of the Community College of Rhode Island, was sponsored by the Newport County Parents Advocacy Group and Rhode Island FORCE (Families Organized for Reform, Change, and Empowerment.) RI FORCE streamed the event live and has posted the recording on its Facebook page, here.

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

By Gina Macris

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

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

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

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

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

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

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

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

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

Kie and Moseley great shot.jpg

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

By Gina Macris

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

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

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

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

Tina Spears, L, hands Microphone to Anne LeClerc

Tina Spears, L, hands Microphone to Anne LeClerc

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

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

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

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

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

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

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

The “Variance”

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

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

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

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

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

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

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

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

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

Fact vs Myth

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

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

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

Worries About Funding

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

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

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

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

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


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

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

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

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

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

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

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

Lenore Costa

Lenore Costa

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

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

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

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

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

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

Quality of Leisure Activities Questioned

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

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

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

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

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

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

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

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

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

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

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

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

By Gina Macris

Moseley headshot 2016.JPG

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

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

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

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

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

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

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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“These are complex issues,” Mattiello said.

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

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

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

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

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

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

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

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

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