Families Struggle While Federal Judge Awaits Progress Report On RI DD System Reform

By Gina Macris

Tonya LeCour, a teacher who is scheduled to return to work Sept. 1, also serves as the sole caregiver for a family member with developmental disabilities.

What will happen to her job if she can’t find daytime supports for the person who depends on her?

LeCour was among several participants who sounded similar concerns at a virtual forum hosted online by the Rhode Island Division of Developmental Disabilities Aug. 17, with technical assistance from the Rhode Island Parent Information Network.

The comments reprised the July 30 testimony of Carol Dorros, M.D., who told Chief Judge John J. McConnell, Jr. of the U.S. District Court of her experience caring for her adult son with developmental disabilities fulltime, and her inability to practice medicine, since the COVID-19 pandemic hit Rhode Island in March.

Those familiar with the developmental disabilities community say they believe there are hundreds of people facing wrenching stituations similar to those described by Dorros and LeCour.

Rhode Island is now days away from a court-imposed deadline of August 30 – the first of six such target dates – to outline its strategies for shoring up the developmental disabilities system in the short term and ensuring it complies in the long run with a 2014 consent decree seeking to enforce the Americans With Disabilities Act.

The court’s review comes against the background of strained state finances.

The state budget office has sent a memo to all department heads, including A. Kathryn Power, director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to submit budget proposals for the next fiscal year that cut overall spending by 15 percent.

In a statement, a spokesman said “BHDDH, like all state departments, is working with its financial team and program managers to assess all options in meeting the 15 percent reduction in FY 22 spending, per the OMB (Office of Management and Budget) guidance.”

At the same time, the state Division of Developmental Disabilities has convened several “workgroups” to tackle the issues, and, according to McConnell’s order, is expected to submit a report Aug. 30 that will “describe the process or strategy” for addressing the problems, the timeline for resolving them, and the particular agency or agencies responsible for each item. ( Update: The report was submitted to an independent court monitor, A. Anthony Antosh, who said it was under his review the week of Sept. 6 and would be submitted to the court when the review is finished.)

The developmental disabilities issues are complex. They include include reimbursement rates keyed to staffing ratios that were designed for congregate care and do not translate well to community activities.

For example, the reimbursement structure may require a support person to take along five people with the same budget authorization on a community activity, whether or not their needs or interests fit into the purpose of the outing. Conversely, staffers may have to jump through hoops to come up with an activity that will appeal to all members of the group.

People receiving services may opt for one-on-one assistance, but that decreases the number of service hours during the week. A typical funding authorization for one person translates into about six hours a week of one-on-one help, according to calculations of the Community Provider Network of Rhode Island, a trade association.

In re-shaping the system, the state has at its disposal a recently-completed 134-page report from the New England States Consortium Systems Organization (NESCSO), which was hired more than 18 months ago at a cost of $1.1 million to conduct a comprehensive study that grew out of increasing demand for a review of rates paid to private providers of developmental disability services.

At the request of BHDDH, NESCSO’s consultants did not make specific recommendations but conducted an exhaustive assessment of the current y situation and presented options for change that the state might consider.

NESCSO described the financial position of the three dozen agencies providing services as “tenuous,” re-affirming interim findings made before the pandemic hit.

The report suggested that an increase in long-term employment among adults with developmental disabilities could save the state millions of dollars in the long run that would otherwise be spent on daytime supports.

However, increasing employment, a goal of the consent decree, would require an up-front investment in employment-related supports and retaining the staff necessary to carry them out.

NESCSO estimates that a 33 percent increase in wages, now an average of $13.18 for front line workers, will result in a 50 percent reduction in turnover, which ranges up to 58 percent in some agencies.

BHDDH has not made any public comment on the report.

In the meantime, service providers seem to be keeping a lid on the pandemic in group homes but are struggling to provide scaled-up daytime supports that meet safety guidelines under the current funding structure.

As of Aug. 25, a total of 164 group home residents had tested positive since the start of the COVID-19 pandemic, three more than reported July 21. Of that total, 48 have been hospitalized and 10 have died, according to a BHDDH spokesman. The numbers indicate that the five people who were hospitalized in late July have all been discharged. The most recent death was reported in June.

During the Aug. 17 public hearing, Kevin Savage, director of the Division of Developmental Disabilities, said, “we don’t want to just go back to doing things the old way.”

He offered to speak privately after the meeting with several individuals, including LeCour, the teacher, and a woman whose sister was in a group home and having problems eating as a result of the social isolation brought on by the pandemic.

Linda Ward, executive director of Opportunities Unlimited, chimed in with the providers’ perspective:

“It’s not about re-opening (daytime services) but meeting a person’s needs one person at a time,” she said. Funding limitations may dictate that individuals get one day a week of services, she said.

And there’s no “community” to access except for a socially distanced one, Ward said. Moreover,

staff are concerned about exposing themselves and their families to the virus, she said.

“I know that’s not helpful to families desperate for supports but we have to do it one at a time,” Ward said.

Meanwhile, the state’s finances, battered by the COVID-19 pandemic, remain in flux. Much could change before the budget is finalized for the 2022 fiscal year, which begins next July 1. The state budget director, Jonathan Womer, says as much in his memo to department heads dated Aug. 7.

In terms of developmental disabilities issues, Judge McConnell has ordered officials in both the executive and legislative branches, who hold the state’s purse strings, to participate “as needed” in a year-long review of 16 specific issues of concern, and to help find solutions to them.

BHDDH has held initial meetings of five “workgroups” to address issues raised in the judge’s order. In its most recent developmental disabilities community newsletter, the agency put out a call for volunteers interested in working on one of the five committees.

“We are looking for individuals receiving services and family members to participate in their choice of one of five workgroups to add their expertise and input into the system reform,” the newsletter said.

Anyone interested may email Cindy Fusco at Cynthia.Fusco@bhddh.ri.gov.

The newsletter described the workgroups as follows:

1. Eligibility Process Workgroup: This workgroup will look at the process for determining the support needs of each individual and the need to consolidate the application for all pertinent RI services into one process.

2. Appeals Process Workgroup: This workgroup will look at the appeals process for individuals as it relates to eligibility, level of need, or funding level, including the L9/S109 (appeals) process for requesting additional funding.

3. Individual Budgets and Authority Workgroup: This workgroup will look at the process and timeline for developing annual individual budgets responsive to individual needs, allowable costs, and flexibility.

4. Fiscal Workgroup: This workgroup will look at authorizatons, rates, and billing units.

5. Contracts Workgroup: This workgroup will look at the timeline and process by which individuals contract with providers, billing procedures, and how to increase individual control over their services and how their budget is spent.

Streamlined RI DD Regulations Well-Received at Hearing; Public Comment Runs Until Oct. 6

By Gina Macris

A public hearing Sept. 17 on proposed regulations for developmental disability services in Rhode Island lasted less than 15 minutes – a brevity which seemed to reflect well on the state’s rule makers and the committees that helped streamline hundreds of pages of material, some of which dated back more than a decade.

Donna Martin, executive director of the Community Provider Network of Rhode Island (CPNRI), said as much. She commended all state officials involved in drafting the proposed regulations, particularly those in the Office of Facilities and Program Standards and Licensure, “for their fidelity to an open stakeholder engagement process as these regulations were reviewed and updated.” The office is part of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals.

Representatives of service providers, families, advocacy organizations, and adult consumers of services all participated in a review process launched a year ago.

Martin did find some terminology that she said needed correcting. She said those in the developmental disability community take exception to the identification of some among them as “patients” who may be “mentally retarded.”

The term is so offensive to those with intellectual or developmental disabilities and their supporters that there is a national campaign to eradicate it. It’s called “Spread The Word To End The Word”.

In 2010, Congress passed Rosa’s Law to replace the term “mental retardation” with the words “intellectual disability” in relevant federal statutes. Most states have followed the federal government’s lead, according to the Institute on Disability at the University of New Hampshire.

The lone instance Martin spotted in the overall proposal was not in developmental disability regulations themselves, but in a department-wide rule regarding the duty of certain officials to report suspected neglect or abuse of vulnerable individuals.

Martin also objected to proposed regulations she said would be burdensome or costly for private service providers, including:

• having to pay for background checks for potential employees. “This is a costly, unfunded mandate, and we urge the state to enact a policy that aligns with state statute ensuring that the state pays for or reimburses” developmental disability and behavioral healthcare providers for these costs, she said.

• treating outside providers of temporary “respite” care as agency employees, which would “require a significant change in policy and practice and was not vetted as part of the stakeholder process.”

• keeping health care records for 10 years instead of the current 7 years.

• requiring agency staff to receive four hours a year of fire safety training, which is “excessive and reduces the available training time (for) other equally important issues.” Instead, regulations should “suggest that all staff receive annual fire safety training.”

In another comment, Martin said that the definition of the “staff” of developmental disability service organizations licensed by the state should not include interns or volunteers, who are not employed by these providers.

The public comment period ends Oct. 6. Comments may be addressed to Gail Theriault, Esq., Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, Office of Legal Counsel, Hazard Building, 41 West Rd.,Room 241, Cranston, RI 02920.

RI DD Regulatory Overhaul To Emphasize Transparency; Quality Services, Officials Say

By Gina Macris

When proposed new regulations for Rhode Island’s Division of Developmental Disabilities (DDD) emerge from committee early in 2018, they will aim to ensure that all agencies providing services to persons with disabilities meet consistent high-quality standards.

The state will require direct care agencies to employ staff with distinct certifications to provide one or more kinds of supports to clients. Training of agency workers is expected to follow the same process that is now required before direct care staff can work in a pilot job support program run by DDD – a  combination of classroom instruction, field work, and a final exam. 

But workers will not be expected to have certification the moment the new regulations go into effect. Expanding the training process begun for workers in the supported employment pilot program will take time, said Kerri Zanchi, director of DDD.

Another feature of the new regulations will require DDD to publish the categories of licenses held by direct care providers. They are: 

• “Full,” or unrestricted
• “Full, with stipulations”
• “Provisional”, to designate a new service provider
• "Conditional”, or probationary
•  “Suspended,” which means not currently in operation, but the license has not been revoked.

Zanchi and Kevin Savage, the director of licensing for the division’s parent organization, the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH),talked about the overhaul of regulations during a wide-ranging public forum at the Smithfield Senior Center Nov. 7 and in an earlier interview with Developmental Disability News Nov. 3.

The Division of Developmental Disabilities is not alone in rewriting its regulations.

All agencies of state government must recast their rules of operation by August, 2018 with an eye toward simplicity and clarity of language as part of the Administrative Procedures Act of 2016, pushed by Governor Gina Raimondo in a drive for greater transparency in state government.

Even before the regulations are finalized, Savage said in the interview Nov. 3, he hopes to have licensing categories for all developmental disability service providers posted on the BHDDH website.

The proposed regulations have emerged from six months’ work on the part of a broad-based committee of individuals with a stake in the developmental disability system, including consumers and family members, Savage told an audience of about 75 at the public forum in Smithfield Nov. 7.

“The community was well served by this process. It was amazing,” Savage said.  Representatives of different segments of the developmental disabilities community listened to each other and showed “passionate concern with the people being served,” he said.

The proposed regulations will be shared with the developmental disabilities community before they go out for formal public comment, Savage said. Community meetings will be set for early 2018, after the year-end holidays, he said.

Among other things, the new regulations will help eliminate inconsistencies across departments of state government, Savage said, like background checks for prospective workers who would come into contact with vulnerable children and adults in a variety of capacities.  The regulatory reform also is necessary to comply with the so-called Final Rule for federal/state Medicaid Home and Community-Based Services (HCBS).  The Final Rule, a compilation of federal regulations, emphasizes that all persons with disabilities who receive Medicaid services must have access to their communities to the greatest extent possible.

Both the HCBS final rule and a separate 2014 federal consent decree pushing  employment opportunities and community-based non-work activities for Rhode Islanders with developmental disabilities get their authority from the 1999 Olmstead decision of the U.S. Supreme Court. The decision clarified the integration mandate in Title II of the Americans With Disabilities Act.

Zanchi, the DDD director, said that the regulatory shift toward certification of the skills of direct care workers is partly driven by U.S. District Court oversight of the Olmstead consent decree, in which an independent court monitor has emphasized continuous quality improvement.

“The public will know what the providers are certified to do,” Zanchi said in the interview Nov. 3. “And that’s part of our quality management plan.”

“That will be hard work,” she said. “We will build certification standards in each area, starting with day and employment services.”

In the future, the whole notion of certification is likely to overlap with fiscal discussions about low wages and high turnover in the field of direct care, where one job in six goes vacant, according to a trade association of developmental disability service providers.

The pilot program in supported employment requires certification for workers who provide services in job development, job coaching and the like. But the graduation rate from a tuition-free training program at the Sherlock Center on Disabilities at Rhode Island College so far has been about 40 percent, for a variety of reasons, according to a Sherlock Center official.

RI DD Public Forum Highlights Personal Choice, Inclusive Initiatives For Redesigning Services

Deanne Gagne                                                                                                                                                                                                                                           all photos by anne peters

By Gina Macris

During a public forum on Rhode Island’s developmental disability services Aug. 8, Deanne Gagne talked about the importance of personal choice in improving quality of life, for herself and others. 

“It’s really about the person in the center who’s driving the vehicle,” not the service system defining the options, said Gagne, a spokeswoman for Advocates in Action, a non-profit educational organization which encourages adults with developmental disabilities to speak up for themselves.

For Gagne on that day, personal choice turned out to be about the spontaneity of doing somethingmost adults take for granted: making a lunch date.

After the meeting, Gagne connected with an old friend who also attended the forum at the Coventry Community Center.

Because Gagne controls the way she uses her service dollars, she did not need to discuss with anyone how she and her wheelchair would get to and from the chosen restaurant.  Gagne’s assistant simply pulled Gagne’s cell phone out of the bag that hangs across the back of her chair and handed it to Gagne, who marked the date, time and place in her calendar and handed back the phone. That was that.

As a speaker during the forum, Gagne summarized the message of recent public sessions hosted by  Advocates in Action, in collaboration with the state and the Sherlock Center on Disabilities at Rhode Island College, on thinking “outside the system” or “outside the box” in planning for the future.

“It’s back to basics,” she said. “What do you want to do with your life, and what do you need to make that happen?”

Both a 2014 consent decree and a new Medicaid rule on Home and Community Based Services (HCBS) put personal choice at the heart of mandated changes in the approach to services. All developmental disability services in Rhode Island are funded by the federal-state Medicaid program.

One parent who has attended a recent Advocates In Action session on personal choice, or “person-centered thinking”, said there’s a long way to go before such a change becomes everyday reality.

“It seems like a giant step to get from where we are now to where we’re going,” said Greg Mroczek, who has two adult children with developmental disabilities.

None of the developmental disability officials who hosted the forum disagreed with him.

Zanchi           

But Kerri Zanchi, the director of the Division of Developmental Disabilities, and her administrative team made it clear that they want the public to participate in creating a new system of services in a much more active way than is the norm when bureaucracies adopt change.

Kevin Savage, director of licensing, who leads a continuing effort to rewrite developmental disability regulations, said, “We want to have regulations that are meaningful to participants and their families.” The committee rewriting the regulations, which began working in the spring, includes representation from consumers and family members. Savage said a draft of the proposed regulations should be completed in September and released for public comment later in the fall.

Also on Aug. 8, the Division put out a new call for individuals interested in serving on an external quality improvement advisory council.

The advisory council would complement an internal quality improvement committee as part of a broad effort intended to make sure services are faithful to the requirements of the consent decree and Medicaid’s Home and Community Based Rule. 

Anne LeClerc, Associate Director of Program Performance, said she would field inquiries about the quality improvement advisory council. She may be reached at 401-462-0192 or Anne.LeClerc@bhddh.ri.gov.

Zanchi, meanwhile, yielded the floor to representatives of a fledgling effort to revitalize family advocacy called Rhode Island FORCE (Families Organized for Reform, Change and Empowerment), an initiative of the Rhode Island Developmental Disabilities Council.

Semonelli

Chris Semonelli of Middletown, a leader of the group, said it aims to become a springboard for legislative advocacy, starting with an exchange of ideas in the fall among those affected by the developmental disability service system. A date for the event, entitled “Coffee and Cafe Conversation,” has yet to be announced.

The Developmental Disabilities Council plans to support the family advocacy group for up to five years, until it can spin off on its own, according to Kevin Nerney, a council spokesman. Anyone seeking more information may contact him at kevinnerney@riddcouncil.org or 401-737-1238.

Francoise Porch, who has a daughter with developmental disabilities, touched on a long-standing problem affecting both the quality and quantity of available services: depressed wages.

“Direct care staff can’t make a living working with our children,” she said.

The General Assembly allocated $6.1 million for wage increases in the budget for the current fiscal year, which Governor Gina Raimondo signed into law Aug. 3 after the House and the Senate resolved an impasse over Speaker Nicholas Mattiello’s car tax relief plan, which emerged intact.

Although the language of the budget says the raises are effective July 1, the fiscal analyst for developmental disabilities, Adam Brusseau, could not say during the forum exactly when workers might see retroactive checks.

The extra funding is expected to add an average of about 56 cents an hour to paychecks – before taxes – but the precise amount will vary, depending on the employee benefits offered by private agencies under contract with the state to provide direct services.

The latest raise marks the second consecutive budget increase for direct care workers and the first in a five-year drive to hike salaries to $15 an hour.

For high school special education students anticipating a shift to adult services, “there seems to be a logjam” when it comes to families trying to figure out how many service dollars they will have and how far the money will go, according to Claire Rosenbaum, Adult Services Coordinator at the Sherlock Center on Disabilities at Rhode Island College.

Rosenbaum

Zanchi said the Division of Developmental Disabilities aims to administer assessments that are used in determining individual budgets a year before an applicant leaves high school and needs adult services.  But Rosenbaum said that based on her contact with families of young adults, a year does not appear to be long enough. 

She elaborated: after the assessment, called the Supports Intensity Scale, families must wait a month or more for the results. Only then can parents explore the offerings of various agencies.  They may settle on one agency, only to be told that the agency is not accepting new clients with their son or daughter’s particular need. Then, when families decide to design an individualized program themselves, they must begin planning all over again.

“A year is not enough,” Rosenbaum said.

Zanchi said she will look into the problem.

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