RI DD Rate Reviewers Asked To Fix Payment System That Still Promotes Segregated Care

By Gina Macris

This article was updated June 17 with a response from the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals.

The Rhode Island state agency which funds services for adults with developmental disabilities has acknowledged for the first time that its underlying reimbursement system for private providers is structurally deficient for complying with the Americans With Disabilities Act as required by a 2014 federal civil rights decree.

While the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has pursued services promoting greater independence for adults with developmental disabilities, “the underlying reimbursement system has lagged,” according to a statement of the scope of work outlined for a consortium tasked with reviewing reimbursement rates.

The rate structure “is grounded in past practices and cost bases associated with the provision of services in the sheltered workshop setting,” BHDDH officials wrote.

“In order to adequately meet consumers’ needs, providers have been paid supplemental funds to address the deficiency in the payment rates,” BHDDH explained in the contract.

BHDDH has a contract with the New England States Consortium Systems Organization (NESCSO) to update a rate structure that has not been reviewed for eight years and to suggest alternates to the current payment methods.

In describing the work ahead for NESCSO, BHDDH says it is:

“seeking to further promote the development of a service system and associated reimbursement arrangements that maximize the opportunity for persons with DD to participate to the fullest possible in community-based activities.”

In 2014 the U.S. Department of Justice found that the reimbursement system incentivized segregated care in sheltered workshops and day centers in violation of the Integration Mandate of the ADA, reinforced by the U.S. Supreme Court in the Olmstead decision.

The Obama administration began vigorously enforcing the Olmstead decision in 2009, but the consent decree in Rhode Island was the first settlement that addressed segregation in daytime services rather than housing.

The consent decree provides a decade-long period of federal oversight of the state’s efforts to change the system. Enforcement of the consent decree entered its sixth year April 9. It will take at least another year for changes in rates and payment methods to go into effect, with the approval of the General Assembly. Enforcement of the decree is set to expire in 2024, but the state would have to show substantial compliance before federal oversight ends.

While some improvements in services have been made, the contract with NESCSO indicates that BHDDH officials believe the reimbursement system has held back compliance efforts.

Staffing Ratios Hinder Needed Flexibility

The underlying problem, said the BHDDH director in an interview, is a rule that requires a ratio of 60 percent funding for community-based activities and 40 percent funding for center-based daytime care in each client’s individual authorization.

The contract language alludes to this situation in describing staffing ratios. It says two areas of “particular focus” are daytime rates paid for employment-related and non-work services. In sheltered settings, for example, there might be one worker for every ten clients. But in the community the number of clients for each worker would have to be much smaller.

Rebecca Boss, the BHDDH director, said the department seeks a “predictable rate structure not driven by very precise ratios” but rather by the needs and preferences of individual clients.

The supplemental payments intended to mitigate the deficiencies in the underlying system “are an increasing portion of overall payments, reflecting the inadequacy of the current rates,” the contract language explained.

According to department officials, that language was meant to refer to the historical trend, in which supplemental payments had increased to as much as $7.8 million in a three-month period.

Boss froze new approvals at the end of 2017, except for emergency health and safety considerations and a couple other narrowly defined exceptions, to try to curb a multi-million dollar deficit at a time when Governor Gina Raimondo seemed inclined to cut developmental disability services significantly.

According to records BHDDH turns in to the General Assembly every month, the supplemental payments from January through March of this year have declined to $3.6 million, about half the total for the same period in 2018.

Historically, supplemental payments have been awarded only when consumers, families, or providers have made successful appeals of individual authorizations. The appeals, which often have required considerable time and energy, must be made annually, or the authorization reverts to the original amount. The appeals process is but one facet of what many families and providers describe as an unstable system.

Kerri Zanchi, director of the Division of Developmental Disabilities, said supplemental payments are still a big part of reimbursements to private providers, and BHDDH wants NESCSO and its consultants to scrutinize them as part of the review process.

Study Commission To Hear from NESCSO

The rate review coincides with the work of a special legislative commission studying the current reimbursement system, called Project Sustainability.

On June 18, the commission will meet to hear presentations about employment and transportation issues from Scott Jensen, director of the Department of Labor and Training; and from Scott Avedesian, CEO of the Rhode Island Public Transit Authority.

On June 25, the executive director of NESCSO, Elena Nicolella, is scheduled to appear before the commission to give an update on the rate review now being conducted by four consultants under NESCSO’s supervision.

In the meantime, some commission members have given BHDDH their own statements on how they think consultants should approach the work and their ideas for a new system of services that allow consumers and their families to shape the way state funds are used.

A spokeswoman for providers has urged NESCSO and its consultants to gain a thorough understanding of what it costs for a private agency to provide services under the terms of recently-revised regulations for provider operations and quality certification standards.

These bureaucratic steps are part of the state’s efforts to comply with the consent decree and the federal Medicaid Home And Community Based Final Rule (HCBS). Like the consent decree, HCBS embraces the integration mandate of the ADA, but it is a nationwide rule applying to all community-based services funded by Medicaid.

Paradox In Unspent Funds For Employment

Tina Spears, executive director of the Community Provider Network of Rhode Island, warned that simply looking at the way providers utilize the current reimbursement model, which is based on segregated care, will not give the complete picture of the needs of the system.

She did not mention specifics, but a case in point is the performance-based supported employment program, which was funded by a $6.8 million allocation made by the General Assembly in the fiscal year that began July 1, 2016. That allocation still has not been completely spent.

Excluding a start-up period from January through June of 2017, the program spent $2.5 million the first year, from July 1, 2017 through June 30, 2018. It’s expected to spend $4 million in the fiscal year ending June 30, according to a BHDDH spokesman.

Providers initially complained that they could not meet their costs with the series of one-time incentives offered by the program, which was built on same reimbursement system designed for center-based care.

Incentives and enhancements were made more generous during the second year, and negotiations are underway for a third year of the program.

In the meantime, Rhode Island’s last sheltered workshop closed last year and BHDDH says community-based, competitive employment has increased to about 29 percent of adults with developmental disabilities.

A study released by two nationwide associations of providers in January said Rhode Island’s rate of competitive employment was about 19 percent, but that figure dated from 2015. The “Case for Inclusion” ranked Rhode Island 32nd in the nation on its integration efforts. It was compiled by ANCOR - the American Network of Community Options and Resources, and UCP – United Cerebral Palsy.

Consumers Want More Control Over Money Assigned To Them

Kevin Nerney, executive director of the Rhode Island Developmental Disabilities Council, and Kelly Donovan, who receives state-funded supports, each called for a system that allows greater consumer control of state funding and greater flexibility in the way it is used.

The state should “ensure that funding is available across all imaginable living arrangements,” particularly in situations where a consumer owns or rents a property and a caregiver or family would like to move in. The caregiver or consumer should be allowed a stipend, as is permitted in many other states, to make this type of arrangement viable, Nerney said.

The state should also ensure that adults with developmental disabilities have the support of familiar staff while they are hospitalized to avoid the trauma of being in an unfamiliar environment where they can neither make themselves understood nor understand what is being said to them, Nerney said.

In addition, the state should adopt a way to assess the support a person receives from family or friends in deciding funding levels. While most of those receiving services from the Division of Developmental Disabilities live in the family home, that home may include a large healthy family, a single aging parent, or a grandparent with Alzheimer’s and a sibling who also has significant needs for support, Nerney said.

And he called for more funding for those hired by self-directed consumers and their families to write support plans necessary to qualify for state funding. The expectations for the plan writers have multiplied over the last 20 years but the fees remains the same at $500 for the initial plan and $350 for an annual renewal, Nerney said. There should be an allowance for self-directed families who need ongoing coordination of services, he said.

Kelly Donovan, who herself receives services from BHDDH gave a concrete example of what greater control and flexibility might look like.

She said people should be able to enjoy an outing without:

A: going home early because a staffer’s shift ends

B: taking everyone in your group home with you, even if one or more of them really didn’t want to come.

“People should be able to have their designated time to themselves and opportunities to be involved in community activities,” she said.

The public may submit comments or questions about the rate review process by email at BHDDH.AskDD@bhddh.ri.gov. Please copy and paste the email address into your email program, or get a link by visiting http://www.bhddh.ri.gov/developmentaldisabilities/community_forums_event.php

In response to this article, Randal Edgar, a spokesman for BHDDH, released the following statement on June 17:

The article published on June 12 on the Olmstead Updates blog presents a misleading picture of Rhode Island’s system of care for adults with developmental disabilities.

The headline claims this system “promotes segregated care.”

This assertion is false.

The article attempts to back up this assertion up by referring to language in a state contract with a consultant that is reviewing the rates paid to DD providers. But in referencing the contract language, the article misreads the intent of that language.

The contract language speaks from a historical perspective. It states that while the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals has pursued the development of “a services system that supports greater independence” for the DD population, “the underlying reimbursement system has lagged.” It goes on to say that the “basis for the development of prevailing rates is grounded in past practices and cost bases associated with the provision of services in the sheltered workshop setting.”

Acknowledging that the existing rates are grounded in past practices and need to be updated is not the same as saying the system as it operates today promotes segregated care, and in saying it does, the article ignores and/or minimizes many steps the department has taken to improve the care provided to adults with developmental disabilities. It should be noted that the reporter met with BHDDH officials for more than an hour but did not press this assertion and obtain their view of the contract language.

The article is wrong again when it states that department froze new approvals for supplemental payments in 2017 to help offset a budget deficit. The department reduced those approvals, applying more stringent standards, not because of a possible budget deficit but because this made sense from a policy standpoint.

Finally, the article gives voice to people outside the department, asking them to describe where the DD care system should go, without giving BHDDH officials a chance to share their vision. In the process, it conveys a false impression that BHDDH officials are not passionate about moving this system forward.

We are disappointed that the article did not present a more complete and accurate picture.

Separately, the public may submit comments or questions about the rate review process by email at BHDDH.AskDD@bhddh.ri.gov. Please copy and paste the email address into your email program, or get a link by visiting http://www.bhddh.ri.gov/developmentaldisabilities/community_forums_event.php

"Project Sustainability” Commission To Continue Hearing Members’ Recommendations May 22

By Gina Macris

Members of a special legislative commission studying Rhode Island’s funding of services for adults with developmental disabilities are expected to finish presenting their recommendations for change at the commission’s next meeting Wednesday, May 22, according to the chairman, Sen. Louis DiPalma.

The recommendations which have been aired coalesce around a vision of a future in which adults with developmental disabilities get the supports they need to live where they want, find a job, and do what they want in their spare time, just like anyone else, in keeping with the integration mandate of the Americans With Disabilities Act. That mandate is reflected both in the Medicaid Home and Community Based Rule (HCBS) and the 2014 federal consent decree between the state and the U.S. Department of Justice.

To realize an inclusive future, it is critical that the state adopt an alternative to the current fee-for-service funding model, which poses “challenges and barriers” for the for the privately-run system of developmental disability services, DiPalma said.

The state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has begun a review of the rates and the rate model for paying private providers and invites public comment by email at this address: BHDDH.AskDD@bhddh.ri.gov (Please copy and paste the email address.)

DiPalma said commission members have submitted comments on the rate review to BHDDH. In addition, the recommendations aired so far have sounded some common themes, including a need for better transportation and a desire for a seamless bureaucracy that can meet the needs of individuals at all stages of life, DiPalma said.

The transition between special education services in high school and the adult service system has been compared to “falling off a cliff” by many parents, according to anecdotal reports to the commission.

DiPalma said he will ask RIPTA, the Rhode Island Public Transit Authority, and the Department of Labor and Training to become directly involved in efforts to redesign the developmental disabilities service system. The consent decree, which resulted in the elimination of sheltered workshops in Rhode Island, calls on the state to increase supports to adults with developmental disabilities seeking jobs in the community.

The May 22 commission meeting will begin at 2 p.m. in the Senate Lounge at the State House.

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

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

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

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 Project Sustainability Commission To Meet December 12 To Air Views On Existing DD Services

By Gina Macris

The Rhode Island Senate’s Project Sustainability Commission, which is evaluating the state’s fee-for-service Medicaid payment system for private agencies serving adults with developmental disabilities, will meet Wednesday, Dec. 12 at 3 p.m. in the Senate Lounge at the State House.

Three members of the commission will summarize the views of all 19 panel participants regarding the planning, programming, and funding of the current system, as well as the family or consumer experience, according to the commission chairman, Sen. Louis DiPalma, D-Middletown. State officials, private providers, families, and consumers of services funded through the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals are all represented on the commission.

The meeting is open to the public, and a portion of the session will be reserved for comments from the audience, DiPalma said.

Eric Beane, RI Secretary Of Health And Human Services, To Step Down; Career Options "Open"

By Gina Macris

ERIC BEANE * Photo Courtesy Of State Of RI

ERIC BEANE * Photo Courtesy Of State Of RI

Eric Beane, Rhode Island’s Executive Secretary of Health and Human Services, will step down at the end of the year, the office of Governor Gina Raimondo announced Nov. 15.

Over the four years of Raimondo’s first term, Beane has served the governor in several high-level capacities, most notably as a troubleshooter assigned to clean up the disastrous roll-out two years ago of UHIP – Unified Health Infrastructure Project – a computerized public assistance system that left thousands of needy individuals without benefits.

Raimondo has appointed Lisa Vura-Weis, a deputy chief of staff in her office, as interim Secretary while a search for a permanent replacement is underway.

Beane, whose last day on the job will be in mid-December, plans to travel and spend time with family and friends, according to a spokeswoman for the Executive Office of Health and Human Services. He is “leaving his career options open,” the spokeswoman said.

In a statement, Raimondo said she is “deeply grateful for Eric's four years of service to the people of Rhode Island. Because of Eric's work, Rhode Island's health and human services are undoubtedly stronger today than they were when I first took office."

Raimondo, in addition to noting his work on the UHIP system, credited Beane with directing the reform of the Department of Children, Youth and Families (DCYF) and overseeing the implementation of a “nationally recognized action plan to address the addiction and overdose crisis that is saving Rhode Islanders’ lives.”

Beane, a former trial attorney for the U.S. Department of Justice and former deputy chief of staff for former Governor Martin O’Malley of Maryland, came to Rhode Island as Raimondo’s deputy chief of staff in 2015. He also served as Raimondo’s Chief Operating Officer, overseeing social services, and served as acting director of the Department of Human Services before he was named to the Secretary’s position in the wake of UHIP scandal in May, 2017.

As acting Secretary, Vura-Weis will focus primarily on budget and management and help with a comprehensive search for a permanent replacement to Beane, according to a statement issued by the governor’s office.

In her current position she has focused on health and human services, administration, and management, working closely with Beane and Raimondo on UHIP.

Before joining the Raimondo administration she worked for the Boston Consulting Group on projects related to healthcare effectiveness. Vura-Weis also has worked for the state of New York on healthcare insurance reform. She has a master’s degree in business administration from Columbia University and a master’s degree in public health from Princeton.

The Secretary of Health and Human Services oversees the Departments of Health, DCYF, the Department of Human Services, and the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH). Among other things, BHDDH is charged with implementing reforms in services for adults with developmental disabilities to comply with a 2014 federal civil rights agreement with the Department of Justice.

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.

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

Wendy LeBeau.jpg

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

RI Consent Decree Task Force Details Concerns About DD Services In Report To Federal Monitor

By Gina Macris

Many young adults with developmental disabilities in Rhode Island are still not receiving services to which they are entitled in a timely manner. Some are not getting services at all.

These conclusions have emerged as the consensus of the Employment First Task Force (EFTF) concerning Rhode Islanders with intellectual and developmental challenges who are trying to get regular jobs and other integrated services promised by a federal consent decree signed nearly four years ago.

The EFTF grew out of a provision of the 2014 federal consent decree which called for a bridge between the public and state government.  An independent court monitor on the case has made it clear that he expects the EFTF to provide a reality check from the community as the state tries to desegregate its services for adults with developmental disabilities to comply with the Americans With Disabilities Act.

The Task Force, including developmental disability professionals in the private sector, family members and consumers themselves, summarized its observations and recommendations covering the last half of 2017 in a recent progress report to the court monitor, Charles Moseley.

In 2016, under pressure from Moseley, the U.S. Department of Justice, and U.S. District Court Judge John J. McConnell, Jr., the state cleared a backlog of as many as 250 applications for adult services and developed an “eligibility by 17” policy.

The policy is intended to allow families plenty of time to plan a smooth transition for their sons and daughters to move from high school to the adult world. Most special education students eligible for adult services from the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) stay in school until the age of 21.

Nearly a year after the “eligibility by 17” policy was announced, in July, 2017, EFTF members were still hearing comments relayed by special education professionals that some families of students were notified of their eligibility but weren’t told how much money they would be allocated in time to plan individualized and meaningful services.

In response to follow-up questions from Developmental Disability News, a BHDDH spokeswoman said in an email August 3 that the agency, working with the Rhode Island Department of Education, local school districts and the Rhode Island Parent Information Network,  is “able to adhere to (the state’s) ‘eligibility by 17 policy.’ ”

"Logjam Cited In Onset Of Adult Services

 But five days later, Claire Rosenbaum, an EFTF member who works as the adult services coordinator at the Sherlock Center on Disabilities at Rhode Island College, said at a public forum that “there seems to be a logjam” when families are trying to figure out how much money the state has awarded them and what it will buy.

At the time, Kerri Zanchi, director of the Division of Developmental Disabilities, (DDD) said her division aimed to give families a one year to plan before their son or daughter leaves left high school and needs needed adult services.

But Rosenbaum said a year is not long enough. Families may explore their options and settle on a particular agency, only to be told it cannot accept a new client with a particular disability or disabilities, she said.

That scenario is not uncommon. A precarious fiscal landscape has prompted many providers of developmental disability services to limit the number of new clients. 

Often, families turned down by one or more agencies  decide that the only way they can get a customized, high quality program is to organize it themselves and pay individual workers through a designated fiscal agent that handles the budget. Once that decision has been made, the families must begin planning all over again, Rosenbaum said, reiterating her conclusion that a year is not enough.

In December, DDD provided data about "eligibility by 17" that EFTF had requested six months earlier, including:

  •  The number of applications and the ages of applicants
  •  The number found eligible and the time span between application and eligibility determination
  •  The number of newly eligible persons who received an initial needs assessment and the time span between the eligibility determination and the assessment interview
  • The number who began receiving adult services and the time span from the completion of the needs assessment

In its report, EFTF said that DDD is “actively charting when and why gaps in the process appear.” 

The “gaps in the process” are not defined in the report. But it said Task Force members and state officials agreed to meet regularly to “determine what issues, if any, exist in this process and how to address these issues.”

Data released by BHDDH in quarterly public forums in November and February shed light on some of the requests that had been made by EFTF; the number of applications, the ages of the applicants, and a breakdown on the proportion found eligible. 

The “eligibility by 17” policy assumes that 16 and 17-year olds are submitting applications to BHDDH for adult services, but the most recent data indicates that the 16 and 17year-old age group accounted for only 11 percent of applications between August, 2016 and February 10, 2018. The lack of applications from younger students suggests that the “eligibility by 17” policy hasn’t been thoroughly communicated to families. (See chart below.) 

graph on age distribution of applicants.JPG

At the same time, one table indicates that the proportion of applications from 16 and 17 year-olds has been increasing in the last year.

students applying earlier.jpg

At the most recent public forum, BHDDH officials also presented information on the proportion of applicants that have been found eligible for services. Of 635 applications received between August, 2016 and Feb. 16, 2018, a total of 595 have been decided, including 264, or 44 percent, that were approved without any additional documentation.

The data indicated that an additional 158, or 27 percent, eventually would be approved once documentation was completed.  

Other Issues Raised By Task Force

The Task Force also expressed concerns about other issues. They include:

  • A lengthy needs assessment done for each person eligible for services
  • The ramifications of a push for more individualized, or “person-centered” services and the planning that goes into them
  • An overall approach, dubbed “conflict-free,” in which planning, funding, and service delivery are handled by separate entities so that the best interests of individuals with developmental disabilities are not compromised. Currently, BHDDH handles funding and assessment and approves individual service plans developed by private agencies or independent developmental disability professionals.

Assessing Individual Needs  

 In November, 2016, the state implemented a revised needs assessment, called the SIS-A  (Supports Intensity Scale - A). The SIS-A had been promoted as more accurate than the previous version, and the Task Force concurred.

“Reports seem to indicate better results,” the report said.

At the same time, the Task Force found “ongoing challenges.”

For example, the Task Force said the SIS-A, developed by the American Association on Intellectual and Developmental Disabilities, was “not intended to be a funding mechanism.” That’s the purpose for which it is used in Rhode Island and many other states.

The Task Force recommended that an independent third party be chosen to provide “better interviews” and eliminate conflicts with funding decisions.

Highly detailed interviews with persons eligible for developmental disability services and their families are at the heart of the SIS-A assessment process. Both the assessment and the individual funding decisions are in the hands of BHDDH.

During the interviews, families are very reluctant to speak in great detail about the “deficits and struggles” of the individual at the center of the assessment process, but they don’t understand that this hesitance may result in lower funding for their loved one, the Task Force said.

“Families don’t understand that the first ten minutes of questions which capture exceptional medical and behavioral issues dictate a substantial difference in funding,” the report said.

The Task Force recommended that community organizations, like Advocates In Action, the Cross Disability Coalition, The Rhode Island Public Information Network, and a new parent advocacy group called  RI-FORCE, offer training to their constituencies on the interview process of the SIS-A.

A Call for True Conflict–Free Planning

The report tackled the challenges of so-called person-centered planning, in which the needs and preferences of an individual drive short-range and long-range career and life goals, regardless of the immediate limitations of program offerings of a particular agency.

 In person-centered planning, these individual needs and preferences also drive budgetary decisions, although it is generally understood that not all the supports needed by a person with developmental disabilities will be provided by paid staff.  

“It is our opinion that implementing real, conflict free person-centered planning could have a greater positive effect on people’s lives than the consent decree itself,” the Task Force wrote.

“While there has been some recent movement on the issue,” according to the report,  Rhode Island has been out of compliance for four years with Medicaid regulations for conflict-free individualized planning and management of services.

The Task Force said individuals with developmental disabilities, their families, and service providers all have shown resistance to the person-centered planning initiative now underway.

Some consumers and their families “view this as an additional layer of bureaucracy, while others would prefer all their dollars go to services rather than planning. Some family members are concerned that they would not be as involved using this process,” the report said.

Service providers, who are paid for planning individualized client programs, fear that they will not be able to meet the individualized needs of clients, particularly with limited funds, high staff turnover, and limited transportation options, according to the report.

There is a concern that “conflict-free” removes the staff who best know the individual from the planning process, the Task Force said.

It also expressed concern that there are no additional funds to provide conflict-free planning, saying that redistributing existing planning funds that now go to private providers “may destabilize already underfunded services.”

While calling for additional funding for person-centered planning, the Task Force also urged a continuation of a series of workshops on “person-centered” thinking and planning that is offered by the Sherlock Center on Disabilities at Rhode Island College to promote better communication on the topic. 

Some of the perceptions about person-centered planning “are based on misunderstandings and the general fear that comes with any change,” according to the report. “Communication on this issue will be extremely important.”

BHDDH is trying to address the issue of funding, both to achieve conflict-free planning and case management and to balance its budget in the next fiscal year.

Governor Gina Raimondo’s budget proposal seeks the General Assembly’s approval to amend the Medicaid State Plan so BHDDH can apply for a Health Home waiver that would provide a 90 percent reimbursement rate for person-centered planning and other specific services for two years. 

The earliest such a Health Home might begin operation, on a pilot basis, would be in January, 2019,  and that might be optimistic, according to Rebecca Boss, the BHDDH director.

Supported Employment At Issue

The Task Force, meanwhile, expressed concern about the overall effectiveness of a pilot program in supported employment that is intended to focus on the individual.

“Task Force members expressed concerns regarding the ‘person-centeredness’ of the program, the training requirements to participate, communications regarding the program, and overall effectiveness,” the report said.

Existing staff-to-client ratios prohibit individualizing job seekers’ daily and weekly schedules, according to the Task Force, although that comment did not refer specifically to the pilot program.  DDD also offers job-related services outside the demonstration program.

The Task Force recommended some of its members meet with state officials regularly to review data and develop strategies to ensure the success of the Person-Centered Supported Employment Performance Program.

OP-ED: Investment In DD Supports Critical To Prevent Harm To Fellow Rhode Islanders

By Linda N. Ward  

In his recent opinion editorial “Protect the most vulnerable in RI,” Senator Louis P. DiPalma rightly observes that “the budget is a policy document first, and a fiscal document second. It is a reflection of our priorities.” Knowing this, one sees a troubling pattern if you analyze the state of Rhode Island’s annual budget for supports to people with intellectual and developmental disabilities (I/DD) over the last decade.

Since the economic crash, many industries funded by our state have seen budgetary recovery or have grown far beyond their pre-2008 levels, and some have increased many times beyond those funding levels.  Budgeting for human services, however, has consistently failed to keep pace with the growth of costs over time.  Were state funding for I/DD (intellectual and developmental disability) supports to have been indexed to the consumer price index (CPI) in 2008, there would be 16% more funding ($34 million) for services than have been budgeted for 2019.

Rhode Islanders with disabilities and their families - our neighbors - are in jeopardy and depend on all of us to ensure that their basic health and safety needs are met. As a result of chronic underfunding the I/DD system has reached a tipping point. We must make critical investments to prevent the harm of thousands of Rhode Islanders and their families. The time to act is now.

Agencies that provide support to people with I/DD have not received an increase to their operating rates for 15 years. The rate of reimbursement to providers has remained the same, while all operating expenses have consistently increased.  In most cases, providers have operated at a loss for years. If we do not reverse this cycle, we will see further deterioration of services, and more people with I/DD will have difficulty accessing the services they need.

Simultaneously, we face a workforce crisis like none we have ever seen before.  A decade ago, our direct support professionals (DSPs), the staff who directly assist people with disabilities, were paid wages that were in most cases $3 - $5 above minimum wage.  Over time, the minimum wage has risen, but reimbursements have stagnated. While legislative efforts to raise DSP wages in 2016 and 2017 were laudable, they simply kept providers on par with that minimum threshold, and DSP wages are mostly at or slightly above minimum wage across RI.  With the continually growing demand for home and community based services, RI faces a particular problem because most agencies are currently unable to hire and maintain enough qualified staff.

The current approach to planning and budgeting for I/DD services in RI is not sustainable. We should not continually budget for less than what we know safe and adequate supports cost, and then make retroactive appropriations every year and claim that we are overspending.  Instead, let’s budget according to the actual needs of Rhode Islanders with I/DD and their families.  The proposed $18 million cut in funding to I/DD services (from current year costs) in the Governor’s proposed budget would cause harm to people with disabilities and their families.  The State of Rhode Island was once in the national forefront of services to people with disabilities. The Governor and legislature championed services for this vulnerable population. This is a critical moment for our state. Rhode Island must move to restore its place in supporting people with disabilities, their families and the thousands who make up the compassionate workforce. 

Linda N. Ward is Executive Director, Opportunities Unlimited, Inc. This commentary was jointly authored and signed by the executive directors of 23 agencies that provide supports to approximately 3,600 people with intellectual disabilities and developmental disabilities and their families, and that employ more than 5,000 Rhode Islanders. 

RI DD Public Forum Raises Questions About Balancing Next Budget; No Firm Path Ahead

 l to r: Tracey Cunningham, Brian Gosselin, Rebecca Boss                                                                                                                                                        Photos By Anne Peters 

 l to r: Tracey Cunningham, Brian Gosselin, Rebecca Boss                                                                                                                                                        Photos By Anne Peters 

By Gina Macris

Rhode Island’s developmental disability agency “has no intention at this time to cut any services” to clients or reduce rates to private service providers, the departmental director told some 30 people gathered for a quarterly public forum at the Pilgrim Senior Center in Warwick Feb. 26.

Rebecca Boss, director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), responded to a question from the audience about the budget proposal of Governor Gina Raimondo, who would slash a total of $21.4 million from developmental disability services, including $18.3 million in reimbursements to private providers.

Greg Mroczek, whose son and daughter both receive services from BHDDH, had asked about the budget in relation to the requirements of a 2014 federal consent decree.

 The Olmstead decree requires Rhode Island to transform its daytime services for adults with developmental disabilities from an over-reliance on sheltered workshops and segregated day programs to a system of integrated supports for employment and non-work activities that comply with the Americans With Disabilities Act.

Boss said that “presenting a balanced budget is a challenge” in any year. But it’s particularly challenging when the state faces a structural deficit of about $200 million in the fiscal year that begins July 1.   

Boss said that the governor, the Executive Office of Health and Human Services, and BHDDH are all committed to making sure that “the funding available to the dd (developmental disabilities) system is going to meet the needs of the individuals that we service.

“We believe we will have the services necessary for compliance with the consent decree,” she said. The consent decree covers daytime work and leisure activities but does not address residential services, the area where BHDDH has put an emphasis on cost-cutting in recent years.

Medicaid May Offer Path Forward  

Later in the meeting, Boss explained that the state is exploring the use of a Medicaid option that could help BHDDH balance its budget. The change, she said, also could achieve the programmatic goal of providing case management and coordination that is “free from funding conflicts and free from provider conflicts.” 

The Medicaid option involves the creation of a Health Home, the federal government’s name for an independent entity that would provide adults with developmental disabilities comprehensive care management, care coordination, health promotion, comprehensive transitional care, individual and family support, and referral to community and support services, Boss said.

For the first two years of operation, the Health Home would be supported with a 90 percent federal Medicaid match for every state dollar spent, Boss explained. For Rhode Island’s current fiscal year, Medicaid reimburses Rhode Island at a rate of 51.34 percent for every state dollar spent. For the fiscal year beginning July 1, the so-called Federal Medical Assistance Percentage (FMAP) will be 52.30.

The 90 percent federal match of the Health Home has the potential to bring in millions more in federal Medicaid dollars, but only for a limited period of time.

Boss described the Health Home approach as a “pretty good opportunity.” She asked Brian Gosselin, Chief Strategic Officer for the Executive Office of Human Services, to speak in greater detail about the Health Home option, but Gosselin demurred. 

Because creating a Health Home for developmental disabilities would involve seeking an amendment to the Rhode Island Medicaid State Plan, BHDDH must seek permission from the General Assembly before filing an application, Boss explained.  The request for that authorization to move forward with an application is in Article 14 of the governor’s proposed budget for the fiscal year beginning July 1.

It would be next January at the earliest that BHDDH could try out a Health Home for developmental disability services, and “that might be optimistic,” Boss said.

RI Experience With 'Health Homes' 

Rhode Island already has three Health Homes, Boss said; one for those with mental illness, another for those with opioid addiction, and a third for children and families, called CEDARR Services.

Having been involved in the planning for two of the three Health Homes,  she said, “I can tell you this is a heavy lift” that involves a complicated application process and fundamental system-wide changes in the state’s approach to coordinating developmental disability services. 

John Susa, who has a son with developmental disabilities and is a member of the Rhode Island Developmental Disabilities Council, relayed what he saw when he participated in the creation of CEDARR, one of the three Health Homes mentioned by Boss.

“I thought it was a great idea,” Susa said. “However, as time has gone on, I’m less certain that it was a good idea. I found a tremendous amount of money spent on case management,” he said; people “going to a lot of meetings, but the end result was a very limited amount of output in terms of the impact on the quality of life.”

Boss said she valued Susa’s perspective. “Whatever happened in CEDARR, we’ll try not to do that,” she said.

At the same time, Boss said “it’s not definite” the state will pursue the Health Home option.

She did not say what else might be done to balance the budget.

One Medicaid Rule At Odds With Need For Care

Renee Doran

Renee Doran

Meanwhile, Renee Doran, whose adult daughter has developmental disabilities, said her daughter’s support person stayed with her when she had to go to the emergency room recently but was later denied pay for that day for the very reason that the worker was helping the young woman in the hospital setting and not in the community. 

As it turned out, her daughter was admitted to the hospital and Doran spent four days at her side. But what would have happened if she had been out of state or otherwise unavailable? Doran asked.

Heather Mincey, administrator in the Division of Developmental Disabilities (DDD), said the situation arose because community-based workers are paid from one Medicaid waiver while hospital-based workers are paid from another.

Mincey said the hospitals have the wherewithal to pay a developmental disability worker who must take a client to the emergency room.

And Boss said BHDDH can work with hospitals to let them know what services are needed. She said BHDDH often works with the state Department of Health, which oversees hospitals, and can “leverage that relationship” to make sure there is cooperation between hospitals and developmental disability services.

The public forum covered a gamut of topics, most of them related to the state’s incremental progress in meeting detailed requirements of the consent decree.

Focus on Supported Employment

Among other things, BHDDH announced an information session on employment-related services March 9 that will be tailored to the needs of individuals and families who do not get services from a particular agency but design their own programs.

Of about 3700 individuals receiving developmental disability services from BHDDH, roughly 500 are self-directed. Only about 8 self-directed individuals were able to participate in the first year of a performance-based supported employment program in 2017, according to Tracey Cunningham, the chief employment specialist at DDD.

Cunningham said the performance-based program is trying to attract more clients from the self-directed group in the current program year.

The session on March 9 for self-directed families and individuals will be from 9 to 11 a.m. in Room 126 of Barry Hall, 14 Harrington Rd., Cranston.

Anyone who is interested in information but can’t attend the session may call Cunningham at 462-3857, or email her at Tracey.Cunningham@bhddh.ri.gov

During 2017, 22 providers in the performance-based program offered employment services to 448 clients, Cunningham said. A total of 169 individuals found jobs, with only 24 of them losing employment, Cunningham said.

In the second year of the program, which offers enhanced performance payments, there are a total of 26 providers anticipating that they will be able to serve a maximum of 623 clients, she said. BHDDH has set aside $6.8 million for the performance-based supported employment program in the next budget.

But there have been difficulties training enough staff to provide supported employment services. BHDDH data presented at the forum showed a 31 percent vacancy rate in the full complement of staff – 234 positions – needed to maximize the program.  

Specially trained job coaches and other employment-related specialists for the performance-based program come from the direct care workforce, which is poorly paid and experiences high turnover.

The performance-based program is intended to boost the number of adults with developmental disabilities in regular jobs to help the state comply with the consent decree.

During 2017, the state met or exceeded the consent decree targets for employment in two of three categories: those who historically have spent their days in center-based care and sheltered workshop employees, according to figures provided by BHDDH.

There is one sheltered workshop left in Rhode Island and it will close sometime this year, said Tina Spears, the new consent decree coordinator.

The state has been lagging for some time in the number of young adults it has helped place in jobs. By now it was to have placed all of a total of 413 young adults recognized by the consent decree as having left school between 2013 and 2016.

At the end of 2017, the total number of  job holders in this young adult group was 177, according to the BHDDH data.  

 

 

RI ORS Official Queried About 28 In Olmstead Consent Decree Population Waiting For Services

By Gina Macris

The names of 28 adults with developmental disabilities, ostensibly protected by a 2014 federal consent decree mandating they receive job-related services, are nevertheless on a waiting list for assistance from the Rhode Island Office of Rehabilitation Services. That figure is 5 more than ORS reported as of Feb. 1.

Joseph Murphy                   Photo By Anne Peters 

Joseph Murphy                   Photo By Anne Peters 

Joseph Murphy, vocational rehabilitation administrator for ORS, gave an update on the waiting list Feb. 13 when he attended the monthly meeting of the Employment First Task Force, a group created by the consent decree which is representative of individuals with developmental disabilities, their families, and community organizations working with them.

The waiting list had a total of 399 names as of Feb. 7, according to an ORS web page, with most of the affected individuals having a wide variety of significant disabilities.

Of that group, the 28 individuals at the center of the discussion at the task force meeting have developmental disabilities, physical or intellectual challenges that have been present since birth or childhood. These applicants for ORS services are supposed to have legal protection through the Olmstead consent decree against having any waiting period for services – a fact pointed out by Deb Kney, Director of RI Advocates in Action. The consent decree derives its name from the U.S. Supreme Court decision which clarified the integration mandate of the Americans With Disabilities Act. 

Murphy said the consent decree monitor and the Department of Justice undoubtedly are watching the situation closely, as is the judge in the case. Murphy referred to comments made from the bench Nov. 30 by Judge John J. McConnell, Jr. about his concerns that adequate state and federal funding be available to provide the services the consent decree requires. The next court hearing related to the consent decree is April 10.

Murphy said the monitor, Charles Moseley, and DOJ lawyers will visit Rhode Island Feb. 26 through 28th  to assess the latest developments in the implementation of the decree. 

When he notified the monitor of the waiting list, Murphy said, the monitor reacted with dismay. “He said, ‘Oh my,’ “ Murphy told task force members.  Regulations of the federal Rehabilitation Services Administration (RSA) require the states to set up a waiting list for vocational rehabilitation services when they can’t serve all eligible applicants.

In this case, the waiting list was triggered by the state’s unexpected loss of about $3 million in federal aid, which was re-directed to Texas in the wake of Hurricane Harvey.

The regulations require states to prioritize the order in which someone is removed from the list according to the degree of a person’s disability. Rhode Island’s so-called “Order of Selection” policy list has three levels of disability, but ORS is planning to amend the criteria for the highest priority category

Currently, applicants for ORS services in the highest priority category are those with mental or physical impairments that limit their ability to function on the job in at least three of seven different ways cataloged in state policy.  A proposed amendment would reserve the highest priority status for individuals those whose disabilities affect them in a minimum of four ways, according to an ORS spokeswoman. A public hearing on the matter will be March 8.

Murphy said that because of the consent decree, ORS is working with the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals to help protected clients find employment-related support elsewhere. 

The waiting list didn’t go into effect until Dec. 19, nearly three weeks after it was supposed to start, because changes in ORS policy needed formal approval from the federal RSA, Murphy said.

On the first day, there were already 324 names on the list, he said. Counselors “are in shock,”  Murphy said.

Murphy said the waiting list is “particularly awful because we were just starting to make headway” serving the consent decree population.

No one is affected who was already receiving services when ORS imposed the waiting list.

ORS receives $10.4 million from Title 1 of the Elementary and Secondary Education Act.But in the last few years it was able to supplement that basic grant with as much as $3.5 million in so-called “reallotment" funds  collected by the federal RSA from states that don’t meet their vocational rehabilitation obligations and re-distributed elsewhere.  For the federal fiscal year that  began Oct. 1, the re-allocation funding came to just $532,000.

While the reallocation money wasn’t set aside for clients with developmental disabilities, a lot of it went to help this group because that’s where the demand was, Murphy said. He characterized the consent decree as an “unfunded mandate.”

 

RI DDD Officials To Discuss Next Steps in Shift Toward "Person-Centered" System

The Rhode Island Division of Developmental Disabilities has reviewed comments from 16 public meetings held since May on its intention to move toward a “person-centered” system, built on the idea that the primary focus of the division’s services should be the needs and preferences of each adult it serves.

DDD officials will summarize the comments they received from the public and discuss the next steps Wednesday, Sept. 28 at Rhode Island College and Monday, Oct. 2 at the Community College of Rhode Island in Warwick. Here are the details: 

WEDNESDAY, SEPTEMBER 27

TIME: 5:00-7:00 pm

PLACE: Rhode Island College, East Campus

             Forman Center Auditorium 030 (parking behind the building) 

             600 Mt. Pleasant Ave., Providence, RI

MONDAY, OCTOBER 2ND

TIME: 1:00 – 3:00 pm

PLACE: Community College of RI, Knight Campus, Room 4080

              400 East Ave, Warwick, RI 

              

 

 

RI DD Workers To Get Average 36-Cent Hourly Pay Bump After Oct. 1; Retroactive Checks To Follow

By Gina Macris

Revised calculations indicate that the estimated hourly wage increase for those providing direct care to adults with development disabilities will be an average of 36 cents an hour, or 6 cents less than the 42 cents an hour that was originally estimated last spring.

 The 36-cent increase will push the average hourly rate, before taxes, to $11.50.

A memo to developmental disability service organizations from the state Division of Developmental Disabilities (DDD) dated Sept. 21 said the raises will be embedded in increased reimbursement rates to private service providers scheduled to kick in Oct. 1.

The lower figure resulted from unanticipated increases related to the number of hours of service that have been billed to the state for a variety of reasons, according to state Sen. Louis DiPalma, D-Middletown, first vice-chairman of the Senate Finance Committee and a close follower of developmental disability finances.

DiPalma likened the situation to the number of people getting served from a single pie.  In this case, the pie is the $6 million the General Assembly earmarked for raises. But the number of service hours, or slices of pie, has gone up. That means that the size of the portions, or the average increase, will be smaller. 

The DDD memo spelled out the factors in the calculations: “the numbers of consumers served, the provision of more individualized and costly services, the expansion of employment supports, as well as supplemental authorizations to address the acuity needs of consumers.” 

In a hearing chaired by DiPalma Sept. 21, Rebecca Boss, director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), said that a continued trend toward “higher acuity,” or greater individual need, will result in “unanticipated stressors in the budget.” 

Because the General Assembly specified in budget language that the raises were to be effective July 1, the private service agencies and their workers will get retroactivity. Although October paychecks will reflect the raise, retroactive payments covering July-September  “should be made available to DDOs (developmental disability organizations) by the end of October 2017 or early November 2017 for disbursement, “ according to the memo.

The current average hourly rate for direct care workers is about $11.14, according to a trade association, with the actual rate varying from one agency to another, depending on many factors, including benefits and other overhead costs. Employee-related overhead is included in the higher rates the state must pay the private agencies. The employers, in turn, put the raises into employee paychecks. 

Dianne Curran, RI Consent Decree Coordinator, To Leave Post Sept. 30, Citing Personal Reasons

By Gina Macris

 

                                                       This article has been updated .

Dianne Curran                        Photo By Anne Peters

Dianne Curran                        Photo By Anne Peters

Dianne Curran will step down Sept. 30 after seven months as Rhode Island’s consent decree coordinator, a post considered critical to success of the state’s 2014 agreement with the U.S Department Of Justice to reform Rhode Island’s programs for persons with developmental disabilities.

 “I am sad to leave such a competent and hard-working team that is committed to improving the lives of individuals with I/DD (intellectual and developmental disabilities),”  Curran said in a statement which cited "personal reasons" for her departure. She did not elaborate.

Curran is the third consent decree coordinator to serve since the agreement was signed in April, 2014. Curran was preceded by Mary Madden, who served from January, 2016, until the end of March of this year, overlapping Curran’s first month on the job. The first consent decree coordinator was Andrew McQuaide.

A spokeswoman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) said there is an interim plan to cover the duties of the consent decree coordinator. The spokeswoman, Jenna Mackevich, confirmed Curran's upcoming departure on behalf of the Executive Office of Health and Human Services (EOHHS), where Curran reports to Health and Human Services Secretary Eric J. Beane.

Until the state finds a qualified successor to Curran, an cross-agency Consent Decree Management Team will shoulder the coordinator's duties, according to an EOHHS spokeswoman, who elaborated on the interim plan. The inter-agency team includes various division leaders and legal staff, who meet regularly, said the spokeswoman, Ashley O'Shea.

The position of the consent decree coordinator is very important in ensuring cooperation among state agencies with responsibilities in implementing the agreement, according to an independent federal court monitor, Charles Moseley. Historically, the various agencies of state government have had the reputation of acting as bureaucratic “silos.”

In addition to BHDDH, the Rhode Island Department of Education and the Office of Rehabilitation Services in the Department of Human Services share responsibility for transforming a system of sheltered workshops and adult day care centers into a network of integrated, community-based services, with an emphasis on regular jobs and personal choice, to comply with the ADA.

With Madden’s arrival early in 2016, Moseley successfully pressed the state to move the position of consent decree coordinator out of BHDDH to the EOHHS, which has authority over both ORS and BHDDH.

Curran has a long and varied career as a disability rights lawyer dating back to 1980, both in Rhode Island and Massachusetts. She is a former deputy director at Rhode Island Legal Services and former supervising attorney at what is now the RI Disability Law Center. Working much of the last 20 years in  Massachusetts,  she was deputy general counsel in the Department of Social Services and then held the same position at the Department of Elementary and Secondary Education

This article has been updated to include details of the interim plan for the state to keep up with the duties of the consent decree coordinator while the state searches for a replacement to Dianne Curran.

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

By Gina Macris

(This article (been corrected.)

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

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

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

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

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

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

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

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

Tracey Cunningham and Joseph Murphy

Tracey Cunningham and Joseph Murphy

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

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

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

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

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

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

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

Nicole Kovite Zeitler

Nicole Kovite Zeitler

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

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

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

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

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

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

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

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

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

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

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

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

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

Victoria Thomas

Victoria Thomas

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

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

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

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

All photos by Anne Peters

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

RI DD Officials "Trying To Do The Right Thing," Says Judge In Review of 2014 Olmstead Consent Decree

By Gina Macris

Rhode Island’s efforts to implement a 2014 consent decree to help adults with developmental disabilities become part of their communities won plaudits from a federal judge July 28, althougth some officials indicated there’s still a long way before the changes permeate the system of state services. 

Judge John J. McConnell, Jr. said he is heartened “when a state entity is trying to do the right thing. It’s not the case where the state is acting in any way in bad faith.”

“Compared to about a year ago we are in a very different place,” he said.

In May, 2016, McConnell issued a 8-page order warning the state he would entertain contempt proceedings unless it moved forward with implementation of the consent decree, which at that time had been stalled for two years.

At the latest hearing, July 28, McConnell said there had been “positive movement” in the state’s efforts to carry out the requirements of the consent decree and urged state officials to “keep it up.” 

The judge acknowledged that sweeping changes in the leadership of state agencies responsible for the disabilities programs in recent months had left him feeling “quite nervous” about the state’s ability to comply with his orders, but he said “now it doesn’t feel that way at all.”

McConnell chose a relatively informal setting for the hearing, convening his review not in his courtroom but in the richly paneled library of the Beaux Arts federal building on Kennedy Plaza in Providence, and inviting participants around a conference table to remove their jackets.

A lawyer for the U.S. Department of Justice, Nicole Kovite Zeitler, and an independent court monitor, Charles Moseley, cited advances in the handling of bureaucratic issues that are pre-requisites for a turn-around in the system that will take years to accomplish. The areas they covered included:

  • The realignment of social work staff to better oversee changes in the way services are delivered
  • Additional steps intended to lay the foundation for an active, multi-faceted quality improvement effort involving the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) and the Office of Rehabilitation Services (ORS)
  • Improved communication with service providers, and with the publicThe expanded availability of training and information on the principles of individualized planning and personal choice that are at the heart of the consent decree – and the federal law behind it.

There were, however, signs that, for some individuals who depend on developmental disability services, change has not yet arrived.

For example, Zeitler said that of 22 private agencies participating in a pilot program to encourage job-placements, 42 percent –nearly half - say they can’t take new clients.

Moseley said he “regularly” gets reports from families who say that they have been turned down by service providers they sought out.

Although the pilot project in supported employment is billed as an “incentive” program, participating agencies report privately they operate at a loss for each client they place in a job.

The legislature allocated $6.8 million for supported employment in the fiscal year which ended June 30, but the pilot program did not begin operations until January, and in the first six months it paid out a total of about $122,000 to participating agencies, according to BHDDH calculations obtained by Developmental Disability News.

Rebecca Boss, the BHDDH director, acknowledged there are “challenges” to delivering those supported employment services but did not elaborate. A report from Moseley to the judge submitted the day before the hearing said there have been multiple meetings between state officials and the providers to discuss various factors affecting the supported employment program, including “operational issues that are reported to be impeding the ability of the organizations to meet their placement goals.”

McConnelland the consent decree officials at the table spent considerable time discussing a relatively low employment rate of young adults – the very group most likely to have had the broadest experiences in high school, including school-to work internships. 

The participants acknowledged that the employment rate for that group, 32 percent, was artificially depressed, because the number of individuals in the young adult category has grown dramatically, from 151 to 497, in the last nine months.  It takes time to find the right job, Zeitler said. 

But the monitor said in his latest report to the judge that progress in finding jobs for young adults “has been slow.”  Even if one analyzes only the original 151 young adults and discounts 60 of them who are not receiving BHDDH services, the employment rate is 51 percent, Moseley said in the report.

He recommended that the state contact each of the 60 not receiving services to make sure they know that supports are available if they need them.

Clients recently interviewed by Zeitler and DOJ colleagues said they were sometimes “bored” with their daytime non-work activities, Zeitler reported. The Americans With Disabilities Act (ADA) says persons who receive public supports must have personal choice in deciding what they do with their time, both for work and leisure.

But the way resources are currently invested does not necessarily promote “inclusivity,” noted Boss, saying the department is hoping to do some “rebalancing” of the way money is spent.

The individual choice mandated in the consent decree implies one-to-one or small group staffing, assuming that a few friends want to do something together in the community. But a fairly rigid regulatory structure currently in place doesn’t allow for such staffing unless clients are deemed to have extensive disabilities.  

The Division of Developmental l Disabilities is in the process of rewriting all its regulations to change from a system that assigns funding based on the severity of a disability to one that stresses individualization and personal choice, or“person-centered planning,” in accordance with the ADA and the consent decree.

As Moseley noted, the state must make these changes anyway to comply with the broader federal Medicaid Home and Community Based Rule (HCBS). The federal-state Medicaid program pays for all developmental disability services in Rhode Island.

Like the consent decree, HCBS derives its authority from the 1999 Olmstead decision of the U.S. Supreme Court. The Olmstead decision re-affirmed Title II of the ADA, which emphasizes its primary purpose to integrate those with disabilities into the mainstream of society and respects their individual choices on the degree to which they wish to participate. 

The last time BHDDH attempted regulatory reform along similar lines, in 2015, an internal BHDDH work group came up with recommendations that would have cost tens of millions of dollars. The proposed changes did not move forward.  

In his most recent report to the judge,  Moseley said that the effort to gain greater flexibility over existing funding “is a positive move, but additional steps need to be taken to map out a process for ensuring that funding supports integrated person-centered day services” that meet the standards of the consent decree.

Zeitler said management officials of direct service agencies seem to understand the principles of individualized, or “person-centered” activity plans, but some direct care workers “don’t speak the language.” 

Zeitler suggested that more training is in order.  Although the training is available, tuition-free, Kerri Zanchi, developmental disabilities chief at BHDDH,  indicated there was no “quick fix” to this problem, given the high turnover in the workforce.

Zeitler, meanwhile, praised the way Zanchi has moved around staff to make the most of available personnel, calling the reorganization “very creative.”  

Zanchi has added four workers to the case management unit, reducing caseloads from 205 to 152 per person. Two of the workers came from the unit that determines eligibility for services and two came from a separate group that assesses the support needs of clients once they are found eligible for services. 

Another worker has been tapped to serve in the newly created position of transition coordinator, to serve teenagers and young adults moving from high school to adult services. The Division of Developmental Disabilities has hired a new residential coordinator to address housing options for those who do not live with their families.

An outside quality improvement expert enlisted by Moseley has said in a report that "there is a significant commitment to change" at BHDDH and ORS to ensure high program standards are implemented across the board. 

"But the staff available to implement change are stretched very thin," wrote Gail Grossman in a report that is part of Moseley's latest filing with the court. Grossman continued: "Serious consideration needs to be given to the need for additional staff resources if DDD (the Division of Developmental Disabilities) and BHDDH are going to develop, manage and oversee a strong QMIS (Quality Management and Improvement System) structure."

BHDDH has a unit entitled quality improvement, but its scope is limited to investigations of neglect or abuse of vulnerable individuals.

Click here for the monitor's latest report to the judge.

Related articles: Judge Willing To Intervene In RI Budget Impasse

Supported Employment Program Falls Short Of Initial Goals in RI

Mixed Reviews on Employment From RI Consent Decree Monitor; Judge to Hear Compliance Status

By Gina Macris

Rhode Island has made “uneven”  progress in finding jobs for adults with developmental disabilities during the first quarter of 2017, according to an independent court monitor who oversees implementation of a 2014 federal consent decree intended to give adults with intellectual challenges more choice over how they live their lives.

The monitor, Charles Moseley, has filed his latest report in advance of a U.S. District Court hearing July 28 on compliance with the decree, which grew out of findings by the U.S. Department of Justice that Rhode relied excessively on  sheltered workshops paying sub-minimum wage and on segregated non-work programs.

Moseley said 62 individuals got jobs between January and March of this year, increasing the total number of placements to 544. That total is 340 more than the number of persons who had jobs 12 months earlier, according to data submitted by the state. Moseley said the number of placements for January through March of 2017 fell below an average of 85 placements per quarter for each of the three previous quarters. 

The first quarter of 2017 coincided with the launch of the state’s new incentive program for private agencies providing job-related services, but Moseley’s report did not make reference to that program. (Read related article.)  Complete employment statistics for April through June are not yet available.

Moseley’s report broke down the statistics according to three categories of adults with developmental disabilities who are protected by the consent decree: those who  had been in segregated sheltered workshops; those who had been in segregated day care facilities, and young adults who are at risk for long-term segregation after they leave high school. The consent decree also covers a fourth category of individuals; high school special education students who are at risk of segregation as adults. But the consent decree does not require the state to help them find jobs while they are still in school.

According to Moseley’s report, among the so-called “day target population”, a total of 262 had jobs on  March 31, an increase of 28 during the first quarter of the year. The total of 262 is more than twice the number the consent decree requires by Jan. 1, 2018. There are a total of 1,541 individuals in this category protected by the consent decree.

In the “sheltered workshop target population,” 9 individuals got jobs between January and March, bringing the total employed since Jan. 1, 2016 to 122. That number represents 81 percent of the consent decree benchmark of 150 placements for former sheltered workshop employees by Jan.1, 2018, according to Moseley’s report. At last count, there were a total of 658 current or former sheltered workshop employees protected by the consent decree.

Moseley said young adults, or members of the “youth exit target population,” gained 25 new job placements between January and March, for a total of 160 placements in that category. The consent decree requires job placements for all young adults the same year they leave high school.  Moseley said that with the current census of the “youth exit target population” at 497, the state had achieved only 32 percent of the number of jobs required by the consent decree for young adults.

Source: RI Division of Developmental Disabilities

Source: RI Division of Developmental Disabilities

 

For the 12-month period ending March 31, the total number of individuals protected by the consent decree grew from 2,962 to 3,621, an increase of 659, which Moseley attributed to the state’s improved data collection.

Moseley has repeatedly emphasized individualized career development planning as an integral part of the job search. Equally important is individualized benefits counseling, which Moseley has said is necessary to allow individuals to make informed choices about whether potential jobs will adversely affect Medicaid and other types of government supports. 

The latest statistics show that about 63 percent of all persons protected by the consent decree have career development plans and about 67 percent of those who are employed have had benefits counseling, according to Moseley.

Friday’s court hearing will be at 10 a.m. in Room 310, the historic library of the federal court building in Kennedy Plaza in Providence.  U.S. District Court Judge John J. McConnell, Jr. will preside.  

Click here to read Moseley's entire report.

Four Years After Settlement, Former Workshop Still Segregates Adults With DD - Monitor

photo by gina macris

photo by gina macris

Former Training Through Placement building at 20 Marblehead Ave., North Providence RI

By Gina Macris

A federal judge has taken the state of Rhode Island to task for failing to keep track of a former sheltered workshop that has continued to segregate adults with developmental disabilities, despite a landmark integration agreement four years ago that seeks to transform daytime services for those with intellectual challenges.

An order by Judge John J. McConnell, Jr. of U.S. District Court sets strict deadlines between the end of June and the end of July for specific steps the state must take to ensure that all clients of the former sheltered workshop lacking jobs or meaningful activities begin to realize the promise of the 2013 agreement.

The so-called Interim Settlement Agreement of 2013 focused primarily on special education students at the Birch Academy at Mount Pleasant High School and adult workers at Training Through Placement (TTP), which has become Community Work Services (CWS.)

The former sheltered workshop used Birch as a feeder program for employees, who often were stuck for decades performing repetitive tasks at sub-minimum wages – even when they asked for other kinds of jobs. Involved are a total of 126 individuals, according to McConnell’s count.

In 2014, after a broader investigation by the U.S. Department of Justice, the state signed a more extensive consent decree covering more than 3,000 adults and teenagers with developmental disabilities. The state promised to end an over-reliance on sheltered workshops throughout Rhode Island and instead agreed to transform its system over ten years to offer individualized supports intended to integrate adults facing intellectual challenges in their communities.

Together, the companion agreements made national headlines as the first in the nation that called for integration of daytime supports for individuals with disabilities, in accordance with the Olmstead decision of the U.S. Supreme Court. The Olmstead decision re-affirmed Title II of the Americans With Disabilities Act, which says services must be provided in the least restrictive setting which is therapeutically appropriate, and that setting is presumed to be the community.

McConnell’s order is the latest and most forceful development in a story that highlights not only the failings of the former sheltered workshop, Training Through Placement (TTP), but the state’s lack of a comprehensive quality assurance program for developmental disability services system-wide.

The former sheltered workshop run by CWS at 20 Marblehead Ave., North Providence, was closed by the state on March 16 on an emergency basis because of an inspection that showed deteriorating physical conditions. Individuals with developmental disabilities were “exposed to wires, walkways obstructed by buckets collecting leaking water, and lighting outages due to water damage,” according to a report to the judge. At that point, CWS had been working under state BHDDH oversight for about a year, because of programmatic deficiencies, according to documents filed with the federal court.

CWS is a program of Fedcap Rehabilitation Services of New York, which had been hired by then-BHDDH director Craig Stenning to lead the way on integrated services for adults with developmental disabilities at TTP in the wake of the 2013 Interim Settlement Agreement. Stenning now works for Fedcap.

With the CWS facility closed by the state, the program resumed operations on March 21 in space provided by the John E. Fogarty Center in North Providence under terms of a  probationary, or conditional, license with state oversight, according to a report of an independent federal court monitor overseeing implementation of  the 2013 and 2014 civil rights agreements in Rhode Island that affect adults with developmental disabilities.

The monitor said the state licensing administrator for private developmental disability agencies also notified the CWS Board of Directors and the Fedcap CEO of the situation, making these points:  

  • the state was concerned about unhealthy conditions of the CWS facility
  • ·the agency failed to notify the state of the problems with the building
  • CWS failed to implement a disaster plan
  • ·The CWS executive director had an “inadequate response” to the state’s findings.

The letter to the Fedcap CEO also said that CWS had been providing “segregated, center-based day services” rather than the community-based programming for which the agency had been licensed.

Summarizing the status of the 2013 Interim Settlement Agreement, the monitor, Charles Moseley, concluded in part that the Providence School Department and the Rhode Island Department of Education have continued to improve compliance through added funding, an emphasis on supported employment, staff training and data gathering and reporting.

Overall, the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, (BHDDH) the Executive Office of Health and Human Services, (EOHHS) and the state Office of Rehabilitation Services (ORS) also have made progress, Moseley said, citing budget increases, new management positions, and programmatic changes he has mentioned in various status reports on the statewide consent decree.

However, progress for clients of the former TTP workshop “appears to have plateaued and possibly regressed,” Moseley wrote, and for that he faulted the successor agency, CWS, and the lack of sustained oversight on the part of BHDDH. 

While some former sheltered workshop employees at TTP did find work after the Interim Settlement Agreement was signed in 2013, “the number and percentage of integrated supported employment placements has remained essentially flat for the last four years,” he said.

Efforts to reach CWS and Fedcap officials were unsuccessful.

In mid-March, CWS  reported that 30 of 71 clients on its roster had jobs. Of the 30 who were employed, 13 with part-time jobs also attended non-work activities sponsored by the agency. In addition, 41 clients attended only the non-work activities.

In early April, Moseley and lawyers from the DOJ interviewed the leadership and staff of CWS and some of the agency’s clients in their temporary base of operations at the Fogarty Center. Serena Powell, the CWS executive director, was among those who attended, Moseley said.

The leadership “revealed a lack of understanding of the basic goals and provisions of the state’s Employment First policy and related practices,” Moseley said in his report.

Rhode Island has adopted a policy of the U.S. Department of Labor which presumes that everyone, even those with significant disabilities, is capable of working along non-disabled peers and enjoying life in the community, as long as each person has the proper supports.

“This lack of knowledge and understanding appeared to extend to the basic concepts of person-centered planning (individualization) and program operation,” Moseley said, citing the names of specific protocols used by state developmental disability systems and provider agencies “across the country.”

Moseley said some CWS staff do not have the required training to do their jobs.

Some job exploration activities have consisted of “little more than walking through various business establishments at a local mall,” Moseley said, explaining that they were not purposeful activities tailored to individual interests and needs.

Moseley said he interviewed three clients of CWS and they were “unanimous in their desire to have a ‘real job’ in the community and to be engaged in productive community activities that didn’t involve hanging out with staff at the mall.

“All three persons reported that they were pleased to be out of the CWS/TTP facility and to have opportunities to go into the community more often. Two of the three expressed an interest in receiving services from a different service provider,” Moseley said.

The state has had four years to work on compliance with the Interim Settlement Agreement and the Consent Decree. During that time, BHDDH has seen three directors and its Division of Developmental Disabilites (DDD) has had four directors, including an outside consultant who served on an interim basis part of the time officials conducted a search that led to the appointment of Kerri Zanchi in January.

Between mid-February and early May, there was a separate upheaval in the leadership of the Executive Office of Health and Human Services, which had taken charge of the state’s compliance efforts in connection with the 2013 and 2014 civil rights agreements.

In a statement to the court, Zanchi alluded to all the turnover, saying that “progress has been challenged due to changes in internal and external leadership impacting stability, communication, resources, accountability, and vision.” 

Zanchi suggested that budget increases and considerable effort among BHDDH and ORS staff during the last year to improve compliance nevertheless have not been enough to make up for the previous three years of inaction.

Among other things, there is no consensus across the network of private service providers – some three dozen in all – “regarding the definition and expectation of integration,” Zanchi said.

DDD is responding by establishing “clear standards, training and monitoring,” she said. McConnell’s order required DDD to complete “guidance and standards for integrated day service” by June 30 and allowed another month for the document to be reviewed and disseminated to providers.

Zanchi said the state now has an “extensive quality management oversight plan” with CWS that involves DDD social workers, who are actively supporting CWS clients and their families. These same social workers also have average caseloads of 205 clients per person, according to the most recent DDD statistics.

Zanchi agreed with Moseley, the court monitor, that “current review and monitoring does not constitute a fully functioning quality improvement program.”

Moseley said that DDD’s quality improvement efforts “are seriously hampered by the lack of sufficient staff.” He called for “additional staffing resources” to ensure quality, provide system oversight and improve and ensure that providers get the required training.

Zanchi said an outside expert in interagency quality improvement is working with the state to develop and implement such a fully functioning plan. McConnell gave the state until July 30 to have a “fully-developed interim and long-term quality improvement plan” ready to go.

Of the 126 teenagers and adults McConnell said are protected by the 2013 Interim Settlement Agreement, 46 need individualized follow-up. Of the 46, 34 have never been employed, including 24 former TTP workers and 10 current Birch students or graduates.

The judge reinforced the monitor’s repeated emphasis over the last two years on proper planning as the foundation for producing a schedule of short-term activities and long-term goals that are purposeful for each person, whether they pertain to jobs, non-work activities, or both.  

These planning exercises, led by specially trained facilitators, can take on a festive air, with friends and family invited to share their reminiscences and thoughts for the future as they support the individual at the center of the event.

McConnell’s order said the state must ensure that “quality” planning for careers and non-work activities is in place by July 30 for active members of the protected class who want to continue receiving services.

Among CWS clients, the agency reported that 10 have indicated a reluctance to go into the community, perhaps because they feel challenged by the circumstances.

Moseley cited a variance to the Employment First policy developed by the state to cover those who can’t or don’t want to work, for medical or other reasons. Moseley’s report said he approved the variance in 2015, but it hasn’t been implemented. He acknowledged that it was difficult to understand.

McConnell’s highly technical and detailed order requires the state to implement a “variance and retirement policy” by June 30 “to discern specifically those who do not identify with either current or long-term employment goals.” 

McConnell also ordered the state to fund an additional $50,000 worth of training from the Sherlock Center on Disabilities at Rhode Island College so that those who work with adults with developmental disabilities can give them individualized counseling about how work would affect their government benefits.

The monitor has repeatedly cited a dearth of individualized benefits counseling. In his latest report, he wrote that in interviews May 11 and May 12, high school students at Birch, their parents, staff, and others expressed the false conviction that students could work no more than 20 to 25 hours a week without compromising their benefits.

"This finding underscores the importance of individualized benefits planning for this population to ensure that students are able to take full advantage of Social Security Act work incentives that may enable them to work more than 25 hours per week while maintaining their public and employer benefits," Moseley said.

The monitor is expected to evaluate compliance with the deadlines in McConnell's latest order in a future status report.

 

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

By Gina Macris

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

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

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

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

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

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

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

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

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

 

Mattiello: RI Direct Care Workers Have Been Heard

By Gina Macris

During recent deliberations on the state budget that emerged from the Rhode Island House Finance Committee last week, legislators considered very carefully testimony about the plight of the state’s most vulnerable citizens and those who care for them, particularly with respect to nursing homes, House Speaker Nicholas Mattiello said in a briefing June 20.

Mattiello                         RI state PHOTO

Mattiello                         RI state PHOTO

The Finance Committee’s budget prevents any further reductions to Medicaid reimbursement rates to hospitals and nursing homes and commits $11 million in federal and state Medicaid funds to raise the pay of home health care aides and those providing direct support to adults with developmental disabilities.    

“Thank you for the viewpoint,” he said of those who testified for the direct care raises, and we’re glad that in these difficult fiscal times we were able to accommodate that,” he said.

Mattiello’s remarks signaled a growing awareness over the last year about poverty-level wages and high turnover which has destabilized the direct care field and, many say, affected the quality of care.

Along the same vein, the proposed $9.2 billion spending package approved by the House Finance Committee promises to restore free bus passes for the elderly and disabled, at a cost of $3.4 million a year for the next two fiscal years.

The compromise budget that will go before the full House June 22 also puts $26 million into Mattiello’s signature car tax phase-out, enabling 150,00 vehicles to fall off the property tax rolls in the fiscal year that begins July 1. And it partially funds Governor Gina Raimondo’s free tuition plan, allowing two years of free attendance at the Community College of Rhode Island for students who maintain a 2.5 grade average and meet other conditions.

Mattiello said he was proud of the budget, which uses a variety of approaches to close a $134-million revenue gap and still manages to deliver on promises made to Rhode Islanders.

“I didn’t say I was happy with this budget. I said I was very proud of this budget,” Mattiello said.

“You work with what you have and you maximize the benefit to the taxpayers. That’s exactly what we did,” Mattiello said.

State Rep. Joseph N. McNarmara-D-Warwick, echoed Mattiello’s remarks, saying he was particularly proud of the “core values we have represented as the majority of Democrats” and "have defended in a tough budget,” including free tuition, raises for direct care workers and the prevention of erosion of reimbursements to hospitals and nursing homes.

But Mattiello interjected, “I’m going to stop you, Joe. This is not a Democratic caucus. These are the values of the House of Representatives.” McNamara, the chairman of the House Committee on Health, Education and Welfare, also chairs the state Democratic Party.

As for the cost-cutting that must be done to balance the budget – including $25 million in unspecified reductions – Mattiello said: “We conferred with the Governor and the Senate. The Governor believes that although this will be difficult, it’s attainable and we agreed it can be done. “

While the budget uses one-time revenue to close some gaps, it will be paired with one-time expenses and will not add to the state’s structural deficit, Mattiello said.

Even though revenues are lower than expected this year, the economy seems to be going in the right direction, with unemployment down to a level not seen since before the recession of 2008, Mattiello said.

“This is our year to continue our momentum,” he said.  “We’re not going to tax our way” out of the revenue shortfall, “we’re not going to cut our way out of it,” but “we hope to grow our way out of it” as the economy continues to improve.