"Significant" Raises Proposed For RI DD Workers After Court-Ordered Talks

By Gina Macris

RI Governor Dan McKee’s proposal to raise wages from $13.18 to $15.75 an hour for caregivers of adults with developmental disabilities might prevent a widespread worker shortage from getting worse.

But those who have had the frustrating experience trying to recruit and retain workers at the current lower rate told the House Finance Committee June 10 that the proposed raise, while significant, will not be enough to ease the labor crisis that prevents the state from complying with a 2014 civil rights consent decree affecting adults with developmental disabilities.

Other advocates made the broader statement that that paying a living wage to caregivers of all vulnerable populations is a moral imperative. Raising pay to attract more workers also is essential to guaranteeing the civil rights of vulnerable people, no matter what their disability, they said.

The Integration Mandate of the Americans With Disabilities Act, (ADA), reinforced by the 1999 Olmstead decision of the U.S. Supreme Court, says that those with disabilities have a right to receive the services they need to live regular lives in their communities.

If the state does not adopt a comprehensive Olmstead plan to provide integrated, community-based services to all people with disabilities, it will remain vulnerable to more litigation like the ADA complaint of the U.S. Department of Justice (DOJ) which led to the 2014 consent decree, said a spokesman for the Rhode Island Developmental Disabilities Council.

As it is, Rhode Island’s Director of the Division of Developmental Disabilities acknowledged at the House Finance Committee hearing that the state has a “difficult relationship” with the U.S. District Court and the DOJ over the status of implementation and the unfinished work ahead as the agreement nears its conclusion in 2024.

I/DD Population Sitting At Home

Seven years after Rhode Island signed the consent decree, agreeing to end the segregation of sheltered workshops and day care centers, many adults with developmental disabilities are no better off.

For example, Jacob Cohen of North Kingstown, who once had a full schedule of activities in the community, now gets only three hours a week of support time, his father, Howard, told the Finance Committee in written testimony.

At AccessPoint RI, a Cranston-based service agency, 50 of 109 supervisory and direct care jobs are vacant and 60 out of 160 clients are not getting any daytime services, according to the executive director.

The consent decree calls for 40 hours a week of employment-related supports and other activities in the community.

A consultants’ report commissioned by providers says the private service providers lack 1,081 of the 2845 full time direct care workers they need to carry out the requirements of the consent decree. COVID-19 exacerbated the workforce shortage but did not cause it, the consultants said. The consultants said that depending on living arrangements, persons with developmental disabilities have experienced a reduction in services ranging from 49 percent to 71.6 percent, with those in family homes having the severest cutbacks.

The McKee administration’s proposed $15.75 hourly reimbursement rate would represent a wage hike of about $2.50 or more for direct care workers – roughly 20 percent.

The state does not set private-sector wages directly but reimburses the private agencies for wages and employment-related overhead, like taxes and workers compensation. Some providers pay a little more than the current hourly minimum of $13.18, by subsidizing wages with revenue from other types of services.

In addition to raising direct care worker pay, the proposal would raise reimbursement levels for supervisors’ wages from $18.41 to $21.99. There would be no raises for support coordinators or job developers, who are paid $21.47 an hour. Nor would those in a catch-all “professional” category receive a pay increase. They are paid $27.52 an hour, according to a presentation the House Fiscal Advisor made to the Finance Committee.

The overall wage increase would cost a total of $39.7 million in federal-state Medicaid funding, including $16.8 million in state revenue and $22.9 million in federal reimbursements.

Of the state’s share of the cost, $13 million would be re-directed from a $15 million “transition and transformation fund” for developing systemic reforms aimed at quality improvement and the reimbursement model that pays private providers. The reimbursement model was redesigned a decade ago to favor segregated care and has not been fundamentally changed since then.

Robert Marshall, the spokesman for the Rhode Island Developmental Disabilities Council, warned that gutting the so-called “transition and transformation fund” could heighten the state’s non-compliance with the consent decree and leave it open to additional federal action.

House Fiscal Office

With the governor’s proposed raises included, the allocation to the private developmental disabilities system would jump from $260.3 million in federal-state Medicaid funding in the current fiscal year to $297.7 million, an overall increase of $37.4 million, according to the presentation of the House Fiscal Officer, Sharon Reynolds Ferland.

Tina Spears, executive director of the Community Provider Network of Rhode Island (CPNRI), a trade association which negotiated the wage hike with the state, called it a “notable first step in rebuilding the workforce serving people with intellectual and developmental disabilities.”

SPEARS CPNRI

“This wage increase will improve the lives of both those who do the work and the families who are served by that work,” she said in written testimony.

But Spears, who had pressed for a rate of $17.50 an hour, told the committee that the state’s final offer of $15.75 does not make it competitive in attracting new workers.

Complicating the salary issue, the administration expects the private agencies to accept group home residents from the state-run developmental disabilities system, which it plans to phase out. The current allocation of $29.7 million for state-run group homes, named Rhode Island Community Living and Supports (RICLAS) would be cut to $9 million in the next budget.

Both the unions representing RICLAS workers and the private providers have expressed skepticism that the privatization is feasible.

The budget calls for the reduction of 50 RICLAS positions. RICLAS pays workers a starting rate of about $18.55 an hour, more than $5 above the current entry-level pay in the private system, and about $2.80 above the proposed new private-pay rate.

On July 1, minimum wages in Connecticut will increase to $16.50 an hour for private-sector direct care workers in the first year of a two-year contract between that state and the Service Employees International Union (SEIU). The rate will jump to $17.25 on July 1, 2022.

Massachusetts will pay direct care workers at privately-run agencies a minimum of $16.10 an hour beginning July 1, the final year of a three-year contract with another branch of the SEIU, according to a salary schedule on a Massachusetts state website related to “personal care attendants.”

Massachusetts already siphons off some of Rhode Island’s best caregivers, said Michael Andrade, President of CPNRI and CEO of Pro-Ability at the Bristol County ARC.

Ruggiero Capitol TV

During the hearing, Rep. Deborah Ruggiero asked Jonathan Womer, Director of the Office of Management and Budget (OMB), to tell her who has been leading the state’s response to the consent decree during the last few years and explain why there has been “so little progress.”

She also wanted to know why she’s hearing reports that the state is “not in very good standing” with the Court or the DOJ and what is being done to change that situation.

Womer introduced Kevin Savage, who has been in charge of the Division of Developmental Disabilities since last July.

“While we haven’t met a number of benchmarks for getting people to work” in the community, Savage said, “there are no longer any sheltered workshops in Rhode Island.”

SAVAGE

“That’s a major achievement of the consent decree,” Savage said. He added that because of the pandemic, meeting goals for employment and community integration has been “extremely challenging,”

During state budget preparations, which began last fall during great economic uncertainty, OMB asked state agencies to submit proposals with 15 percent reductions in their spending plans. The economic outlook has brightened considerably since then.

In January, Chief Judge John J. McConnell, Jr. of the U.S. District Court said Rhode Island must raise direct care wages to $20 an hour by 2024 to attract more direct care workers to Rhode Island providers, who do the work in the field necessary to enable the state to comply with the consent decree.

Two months later, in March, the governor submitted a budget proposal that offered no raises. Then came court-ordered negotiations, which resulted in the administration’s proposal for the $15.75 rate, as well as a separate budget amendment that would comply with another court order, making the developmental disabilities caseload part of formal, consensus-building state budget preparations in November of this year.

During the budget hearing, Savage said, “We are having a difficult time in our relationship with the Court. We do want to repair that.”

“We have tremendous respect for the judge and tremendous respect for the court monitor. We work with some of the best providers you can work with, so it’s really not a matter of not wanting to work with the providers or the court monitor,” Savage said.

The negotiations took too long, he acknowledged.

“We need to pick up the pieces and move forward faster,” he said, engaging the community “much more robustly than we have.”

“We need to get to get to $20 by 2024,” to “stabilize the workforce,” and make other reforms as part of a court ordered, comprehensive three-year compliance plan, he said.

Rep. Alex Marszalkowski, D- Cumberland, chairman of the Human Services Subcommittee of the House Finance Committee, asked why the wage increases would apply to group home workers when the consent decree is limited to issues related to daytime services.

Savage responded that “if we stabilize one part of the workforce, we destabilize the other; the only path is to stabilize the entire system.”

Emphasis on Civil Rights

Later in the hearing, Spears, the CPNRI director, emphasized that hard-working caregivers deserve a living wage and noted that “civil rights protections” are at the heart of the 2014 consent decree. “It’s essentially a corrective action plan to resolve civil rights violations and make sure they never happen again,” she said.

She added: “We are seven years into a ten-year agreement, and there is a tremendous amount of pressure from the Court and the U.S. Department of Justice to achieve the established benchmarks.” As it now stands, the private sector cannot deliver on the compliance the state needs, Spears said.

The Chair of the Long Term Care Coordinating Council (LTCCC) and the representative of the Developmental Disabilities Council each applied a broader perspective on the budget amendments, saying the General Assembly must address the workforce and quality-of-life issues across all vulnerable populations.

Maureen Maigret, chair of the LTCCC, recommended the General Assembly use some of the current Medicaid reimbursement rate, enhanced under provisions of the American Rescue Plan Act, to raise the wages of direct care workers funded by Medicaid’s Home and Community Based Services (HCBS) to the same level proposed for those working in developmental disabilities.

“The issues facing other types of home and community-based services and residential programs are similar to providers of services for persons with developmental disabilities,” Maigret said in written testimony, citing low wages, high turnover and staff burnout, all exacerbated by the pandemic.

“And we know that almost a majority of these workers are women and persons of color whose value has historically been under-valued,” Maigret said.

“Efforts to achieve wage parity for all direct care staff working in government-subsidized Home and Community-Based Services (HCBS) is imperative if the state is to have a quality and accessible LTSS (Long Term Services and Supports) system with appropriate options for persons needing care,” she said.

Marshall, of the DD Council, said Rhode Island could use some of the one-time stimulus funding under provisions of the American Rescue Plan Act to develop an Olmstead plan, a multi-year blueprint for conforming to requirements of the ADA’s Integration Mandate.

Only seven states — Rhode Island among them - still lack such a plan, he said.

Because of the Olmstead decision, Medicaid changed the rules of Home and Community-Based Services programs to help vulnerable persons live as independently as possible at home or in home-like settings.

Marshall said Rhode Island has been in violation of Medicaid’s regulations on home and community-based services since 2014 and is “vulnerable to yet another Department of Justice lawsuit or ineligibility for federal Medicaid match.”

RI DD Funding System Harms Quality Of Life, Advocates Tell House Finance Subcommittee

By Gina Macris

Anxiety, frustration, and fear permeate the lives of adults facing the daily challenges of developmental disabilities, and by extension, the lives of families and caregivers who support them, say numerous Rhode Islanders who wrote to members of the House Finance Committee recently to explain the human effects of chronically underfunded services.

“The person receiving support grieves and is forced to live in a state of perpetual frustration” because of missed opportunities resulting from staff shortages, wrote Diane Scott, who has worked 29 years at West Bay Residential Services. Likewise, “the impact on employee morale is a palpable anxiety and frustration,” Scott said.

Howard Cohen * Photo by Anne Peters

Jacob Cohen has had to begin taking a “significant regimen of medication to control his anxiety so he could deal with his daily life,” wrote his parents, Howard and Patricia Cohen of North Kingstown. They said it has been “heartbreaking” to watch him lose control of his daily activities as funding has shrunk over the last decade.

The letters from Scott, the Cohens, and others served as written testimony in a March 28 budget hearing on the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) before the House Finance Subcommittee on Human Services, chaired by Rep. Alex Marszalkowski, D-Cumberland.

And some of concerns expressed before the finance subcommittee about the quality of care overlapped with remarks made a few hours earlier the same day before a special legislative commission studying the state’s fee-for-service reimbursement system for private developmental disability services, Project Sustainability.

Another letter writer, Holly Walker said she knows a client of AccessPointRI who spends every Monday morning telling everyone how upset she is that she missed Sunday church services – again – because there was no one available to take her.G

A Warwick mother, Pam Goes, wrote that frequent change of staff has increased her own fears about the safety of her non-verbal son.

“Staff who don’t know him struggle to know what he needs, at home and in the community. He is unable to tell them when he is sick, when something hurts, when he is afraid. And my fears are increased as well,” Goes wrote.

Two other mothers, Lisa Rego and Claudia Swiader, asked members of the Finance Committee “to put themselves in the shoes of the parents and families of individuals with a developmental disability.”

“Wouldn’t you want to know that your loved one was being cared for by someone who wanted to be there? Wouldn’t you want to know that your loved one was receiving the support they needed to keep them safe, healthy and happy?” wrote Rego and Swiader, president and vice president, respectively, of the Autism Society of Rhode Island.

Scott, the veteran caregiver at West Bay Residential Services, reminded legislators that “any Rhode Island citizen may be one injury or disease away from needing support for a disability.”

The children and families of workers also suffer the consequences of inadequate funding, others said.

Brandi Ekwegh of Cumberland, a former manager of an AccessPoint group home and a single parent, described missing her tween-aged daughter’s concerts and award ceremonies and even leaving her home alone at 2 a.m. because there was no one else to de-escalate a client’s behavioral outburst at work.

When her daughter said she spent more time with her clients than with her, Ekwegh said, “I was crushed but she was absolutely correct.”

Disabled Have Civil Right To Services

By any measure, caring for adults with developmental disabilities is costly, but the integration mandate of the Americans With Disabilities Act also entitles them to services that allow them to access their communities for competitive employment and leisure activities of their own choosing.

The currently enacted budget for the state Division of Developmental Disabilities (DDD) totals $271.7 million in federal and state Medicaid money and miscellaneous other funds. Governor Gina Raimondo would add another $9.2 million to that bottom line, for an overall $280.9 million, to erase an existing deficit and pay for services during the fiscal year beginning July 1.

About $1.6 million in savings taken from the state-operated group home system, Rhode Island Community Living and Supports, would boost funding for privately-run services by $11 million over the next 15 months, according to information presented by the House Fiscal Office.

Within the $11 million total increase, Raimondo would set aside $6.4 million in Medicaid funds, including $3 million in state revenue, to raise the wages of front-line developmental disability staff by an estimated 34 to 41 cents an hour, depending on who’s drafting the projection.

Providers, Families, Seek $28.5 Million For Wages

Many of the letter-writers urged the Finance Committee to hike the state’s commitment for wages to $28.5 million, so that employers can meet unfunded overhead expenses in addition to passing along a wage increase to all their employees. Every Medicaid dollar the state spends generates a little more than a dollar in the federal Medicaid match.

As it now stands, the governor’s proposed increase would apply only to front-line workers, who typically make roughly $1 to $2 above minimum wage, if that.

In a letter to Marszalkowski , the subcommittee chairman, Kevin McHale, an administrator at AccessPoint, wrote that the average direct care worker at his agency makes $10.77 an hour, only slightly above minimum wage.

McHale, once a direct care worker himself, recalled that in 1987, the General Assembly voted to make a “substantial investment” in the private provider system by raising the pay of direct care workers to $7 an hour, about 90 percent above minimum wage, which was then $3.65 an hour.

At a time when the state was preparing to close the Ladd School, its only institution for persons with developmental disabilities, “this investment was seen as an intentional statement on the importance and value of the vital and challenging (yet rewarding) work that direct support professionals perform,” McHale wrote.

Today, private service providers operate at a loss for each person they employ, they say.

Regina C. Hayes, executive director of Spurwink RI, provided the committee with tables showing that the state funds a fulltime direct care position at $34,454, including an allowance of 35 percent of wages for employee-related expenses. But that figure is almost $9,900 per-person less than what it costs Spurwink for mandatory taxes, vacation, sick and holiday pay and health insurance, Hayes said.

The percentage the state pays for employee-related overhead is set through “Project Sustainability,” the controversial fee-for-service system enacted by the General Assembly in 2011.

Howard and Patricia Cohen, Jacob’s parents, say that Project Sustainability has harmed their son. The change in reimbursement methods “masqueraded as an improvement but in effect was merely a way to reduce costs,” they wrote.

Those already receiving services are not the only ones affected by the budget constraints.

Agencies Can’t Afford New Clients

Linda Ward, executive director of Opportunities Unlimited, a service provider, said that current funding and staffing situation makes it difficult for her agency to take on new clients or launch new initiatives.

Opportunities Unlimited recently had to “step back” from plans to develop a home designed to meet the significant psychiatric and behavioral needs of four women, Ward said.

Her testimony echoed comments made earlier in the day by Gloria Quinn, executive director of West Bay Residential Services, who addressed the special legislative commission studying Project Sustainability.

Families of young people aging out of the special education system often struggle to find agencies that are able to provide services for their sons or daughters, she said.

“We can’t find the staff”, said Quinn, a commission member. An agency’s ability to respond to the demands of the community is at its heart “a wage issue,” she said.

Andrew McQuaide, a senior director at the Perspectives Corporation, called the situation “self-directed by default,” meaning that parents who may not otherwise chose to do so are left to manage their loved ones’ individual programs because they can’t find an agency to provide appropriate services.

McQuaide, another member of the Project Sustainability commission, said that so-called self-directed families are having the same problems as the agencies in hiring direct care workers, but the families are doing it “without support.”

At the commission meeting, Barbara Burns said she recently decided to do a self-directed program of day services for her sister, not because she wants to do it but because it was the only way she could get respite care. Burns’ sister has Down syndrome and Alzheimer’s disease and lives with her on Aquidneck Island.

A proposal in the governor’s budget would create an “independent provider” model of care through the Executive Office of Human Services with a single fiscal intermediary to give those needing services at home broader choice in selecting caregivers.

The independent provider model also would give BHDDH the option selecting one fiscal agent to manage the accounts of self-directed families of adults with developmental disabilities, Linda Haley, a House fiscal advisor, told the finance subcommittee.

The prospect of unwanted change has worried some families, but a BHDDH spokesman said April 1 that DDD will continue with five fiscal intermediaries in accordance with its regulations, as well as a desire to give consumers choice.

Burns, meanwhile, said there should be a single state bureaucracy to address the needs of people with developmental disabilities, whether they are children in school, healthy adults, or people facing chronic illness or the end of life. Families face enough challenges caring for a special child, she said.

Semonelli * image courtesy of capitol tv

Christopher Semonelli, vice president of Rhode Island Families Organized for Change and Empowerment (RIFORCE) , made the same point to the finance committee’s human services subcommittee a few hours later.

Parents of special education students describe the transition to adult services as “falling off a cliff,” said A. Anthony Antosh, Director of the Sherlock Center on Disabilities at Rhode Island College.

Rebecca Boss, the BHDDH director, told commission members that there are other ways to increase wages for direct care workers besides adding to the bottom line.

Even if the state increased wages, Boss said, the milennials millennials making up the current entry-level workforce are “a little different.” Direct care workers need adequate training and supports. “It’s about making sure people love their jobs,” Boss said.

L to R: Louis DiPalma, Rebecca Boss, Heather Mincey OF DDD. * Photo By Anne Peters

Wages are “part of it,” she said, but “I’m hesitant to say it’s the solution. It’s part of the solution.”

She recalled testimony presented to the commission in January about Vermont’s system, which included higher rates for direct care workers but much less reliance than Rhode Island on costly group homes.

Later, Boss told the House Finance subcommittee that she wants to reduce the number of adults with developmental disabilities living in group homes from the current 32 percent to the national average, 26 percent.

BHDDH also has launched a review of the reimbursement rates the state pays to private providers under the terms of Project Sustainability, with an eye toward creating an alternate payment model to the current fee-for service system.

Tom Kane, CEO of AccessPoint, reminded the finance committee members that the same healthcare consultant who helped develop Project Sustainability has just recommended that California increase developmental disability budget by 40 percent, or $1.8 billion. Rhode Island should be prepared for a a report that recommends a similar percentage increase, ane said, given that the state underfunded Project Sustainability from its inception.

Louis DiPalma, D-Middletown, the chairman of the Project Sustainability commission, made the same point earlier in the day.

The consultant hired for the rate review and study of alternate payment model, Elena Nicolella, executive director of the New England States Consortium Systems Organization, will speak at the next meeting of the Project Sustainability commission, according to DiPalma, the commission chairman. Nicolella is also a former Medicaid director in Rhode Island. The date of that meeting has not yet been set.

RI Supported Employment Services Hampered By Lack of Trained Workers, High Caregiver Turnover

By Gina Macris

About 60 percent of all those who start training at Rhode Island College to provide supported employment services to adults with developmental disabilities drop out of the certificate program,  a factor that threatens reform efforts embodied in two federal civil rights agreements.

The drop-out rate in the training program at RIC’s Sherlock Center on Disabilities underlines a shortage of direct care workers in general and in particular a lack of staff qualified to meet the demand from adults with developmental disabilities for employment-related services and to satisfy the requirements of a 2014 federal consent decree and a companion settlement a year earlier.

The specialized training at the Sherlock Center includes classes and field experience in the nuances of supported employment services, from the time an individual starts looking for a job to on-the-job assistance, long-term career planning, and building good relationships with the business community.

The Sherlock Center is under contract with the state to lead the way in educating those who work with adults having developmental disabilities in the best professional practices, consistent with the principles of the consent decree, which puts individuals’ needs and personal preferences at the center of the services they receive.

Workers must successfully complete a course like the Sherlock Center’s before the state will allow private service providers to assign them to help job-seekers find employment that suits them and the businesses that hire them. The Sherlock Center offers its training tuition-free to those who plan to work in one of two pilot supported employment programs;  one funded by the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH),  and another run by the Office of Rehabilitation Services in the Department of Human Services.

The topic of supported employment, primarily the BHDDH program, dominated the discussion at the monthly meeting of the Employment First Task Force Oct. 10. The Task Force is a creation of the 2014 consent decree, which requires Rhode Island to shift from sheltered workshops and segregated day programs to inclusive day services, in accordance with the 1999 Olmstead decision of the U.S. Supreme Court. The decision re-affirmed the integration mandate of the Americans With Disabilities Act.

Vicki Ferrarra                   photo by Anne Peters 

The task force includes representatives of individuals with developmental disabilities, their families, and various community organizations with a stake in the developmental disability service system.  

Vicki Ferrara, who represented the Rhode Island Association of People Supporting Employment First (RI APSE), a professional organization, said there was a 40 percent completion rate in the Sherlock Center training program.

She works as the Sherlock Center’s coordinator for integrated employment.  The group she represented at the meeting is part of a national organization involved in setting professional-level standards for various aspects of supported employment services.

Ferrarra said some direct care workers complete the supported employment training and then leave the field of developmental disability services entirely, often because of low wages.  

Others drop out of the course because they find the work too challenging, she said.

Still others cannot complete the classes or field work because the shortage of direct care workers is so acute that their employers call them in to cover vacant shifts on the job for basic health and safety reasons.

Ferrara said the state does not pay for substitutes while the regular caregivers are in class.

She said the direct care workforce must be stabilized before the state gains enough qualified job coaches,  job developers and supported employment specialists.

Many new hires leave when they realize the job of providing direct support to adults with developmental disabilities is complicated and carries many responsibilities. The average wages are estimated at about $11.50 an hour, including a pay bump of 36 cents an hour that is being processed by the workers’ employers this month. 

The average turnover ranges from 60 percent in the first six months to about 30 percent over 12 months, according to figures presented to the General Assembly earlier this year.

Ferrarra said workers should have at least six months’ experience, learning the basics of direct care, before they are sent to train for specialized credentials. In at least some parts of the service system, new workers get acclimated by working under supervision with just a few specific clients, learning their needs and preferences and strategies for cope with any challenges they might present.

But Ferrara said some workers arrive at the Sherlock Center for specialized employment-related training during their first week on the job.

In September, an official of the supported employment program run by BHDDH reported that the enrollment of individuals seeking jobs was 92 short of the available spaces, a maximum of 517. (Click here for related article.) 

On Oct. 10, Howard Cohen, a member of the Task Force who is the father of a man with developmental disabilities, said a lack of qualified staff has come up repeatedly when he has participated in other discussions about supported employment.

Ferrara provided information on the three-part training program at the Sherlock Center as the Employment First Task Force was considering recommendations it planned to make to the state about the future of supported employment services.  

Instead, questions arose on details that needed clarification, like how the clients for supported employment services have been selected, and how families that hire their own workers through a fiscal intermediary to support their loved ones can get broader access to these services. 

Brian Gosselin, Chief Strategy Officer for the state Executive Office Of Human Services, urged the task force to put its questions in writing and submit them to the state. Gosselin was involved in the design of the BHDDH supported employment program.  That pilot will complete its first program year at the end of December and is under evaluation. By year’s end, the ORS program also will be well into the second half of its initial 12-month run.

RI DD Director Invites Families to Help Overhaul Design of Services With Individual Needs in Mind

Photos by Anne Peters

Kerri Zanchi, center, Director of the RI Division of Developmental Disabilities, is flanked by administrators Heather Mincey, left, and Anne LeClerc, right, as she addresses the audience at a public forum in Newport May 2. 

By Gina Macris

Beginning May 10, Rhode Island’s Division of Developmental Disabilities plans to involve the adults it serves, their families, service providers and advocates in a step-by-step process to overhaul the way it does business .

Kerri Zanchi, the new director of the division, told Aquidneck Island residents who attended a public forum May 2 at the Community College of Rhode Island that the initial discussions will inform an effort to re-write the regulations governing developmental disability services to put the needs and wants of its clients front and center. 

The changes have two drivers:

• A 2014 consent decree requiring the state to correct violations of the Americans With Disabilities Act by providing employment supports and access to non-work supports in the community.

• A compliance deadline of March, 2019 for implementation of a Medicaid rule on Home and Community Based Services (HCBS), which requires an individualized approach to care, treating individuals with disabilities as full-fledged members of their communities.  

Both the consent decree and the HCBS rule draw their authority from the 1999 Olmstead decision of the U.S. Supreme Court, which amounted to a desegregation order affecting all services for all individuals with disabilities.

 Zanchi used the term “person-centered” to sum up the kind of planning and practices that go into the new inclusive approach.  A. Anthony Antosh, director of the Sherlock Center on Disabilities at Rhode Island College, elaborated.

A. Anthony Antosh

“The way the system has worked forever is that someone else controls what people get. We want people with disabilities to get more control of their own lives,” he said. “Resources support part of their lives but not all of their lives,” he said.

He said that in several states, including Texas, Kentucky and North Carolina, faith-based support networks in various communities have resulted in a “dramatically broader network” of personal relationships for individuals with disabilities. “And 80 percent of them have jobs,” Antosh said.

To flesh out the concepts of individualization and integration and how they might work in Rhode Island,  Antosh and Zanchi will co-host a series of discussions to explore the idea and solicit comments throughout the month of May.

The first two sessions will be held in the morning and evening of Wednesday, May 10 at the Sherlock Center. (Details at end of article.)

 “It’s a lot of change. It’s a pivotal time,” Zanchi said. But “if you don’t have a strong person-centered practice, it’s really hard to move the system forward and comply with the consent decree and HCBS.”

Zanchi said she and her staff will pull together comments from all the public sessions and present the results to the public in the early summer, setting the stage for regulatory reform.

Howard Cohen

Howard Cohen, whose adult son has developmental disabilities, took a dim view of the current regulations.  While the goal was to “even up the playing field among the agencies” by establishing uniform rates of reimbursement, he said, the regulations resulted in “a lot of resources toward book keeping rather than managing care.” 

And “the last time, the regulations got ramrodded through,” Cohen said, an allusion to the regulatory changes adopted by the General Assembly in 2011 as part of “Project Sustainability.”

Kevin Savage, director of licensing for developmental disability services, said all those with a stake in the regulations – including families – will be invited to participate in writing new ones.

The new regulations will not be aimed at “correcting past mistakes” but will try to conform to the law reflected in the consent decree and in HCBS, he said. The process also is expected to result in 20 percent fewer regulations than there are now, Savage said.

Zanchi emphasized that compliance with HCBS will mean a change in case management, or the formal approval process for allocating resources to each person’s program of services.

Currently social workers, who have an average caseload of 205 clients per person, share the case management responsibilities with provider agencies, she said. But HCBS sees an inherent conflict of interest in providers making decisions about the services they themselves furnish, to the possible detriment of the individualized goals of the client.

Zanchi said some states use third-party case management and others have state employees do the job, with a “firewall” between them and the fiscal arm of state government.  In Rhode Island, changes in case management won’t come until 2018, she said.

She also told family members that the state would explore expanding the options for residential care, an issue of particular concern to older parents in light of a virtual freeze on group home admissions. HCBS expects states will move away from group home residential care.

After the meeting, Zanchi was asked how changes in practice brought about by the new regulations would be funded.

“When we figure out what it (the service system) would look like, then we need to figure out the funding for it,” she said.

During the forum, Dottie Darcy, the mother of an adult with developmental disabilities, wondered aloud how officials would “develop a system, without money, to account for the needs of all the people. At some point funding has to be addressed,” she said.

“I think it’s outrageous” that service providers “can’t keep workers” because they can’t pay enough, Darcy said.

She lamented a lack of organized advocacy with members of the General Assembly on behalf of individuals with developmental disabilities.

Claire Rosenbaum, a member of the Rhode Island Developmental Disabilities Council, said it is in the process of trying to revive its family organization to do exactly the kind of work Darcy described, “but it’s not there yet.”

The first two sessions on “Person-Centered Thinking and Planning” will be Wednesday, May 10, from 10 a.m. to noon and from 6 p.m. to 8 p.m., at the Sherlock Center on Disabilities on the campus of Rhode Island College, 600 Mount Pleasant Ave., Providence. These meetings will be of particular interest to families who direct their own programs of services for family members, but all sessions in the series are open to the public.

Those wishing to attend should RSVP with Claire Rosenbaum by May 8 at 401-456-4732 or crosenbaum@ric.edu