RI Parents: System Of Care Fails To Address Supervision of Adults With DD In Hospital Setting

Jane Sroka * all photos by anne peters

Jane Sroka * all photos by anne peters

By Gina Macris

Access. Quality. Safety.

Those are the three words chosen by officials of the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to sum up their overarching goals in serving adults facing intellectual and developmental challenges.

But at a public forum in Warwick Feb. 5, Jane Sroka, the mother of a man with intensive special needs, said the reality falls far short of those three goals when adults with special communications and behavioral needs are hospitalized.

The Medicaid dollars to which Sroka’s son is entitled through Home and Community-Based Services funded through BHDDH stop at the hospital’s door.

“My son needs 24/7 eyes-on supervision at all times. It’s huge. It’s life and death. That’s what it is,” she said.

In the hospital, Sroka said, “I was with him 24/7. He was awake 24/7. I was awake, 24/7. That was tough. It’s grueling on everybody.”

You’re talking about putting safety first? This is safety first,” Sroka said.

Not providing that round-the-clock supervision, in her son’s case, would have been dangerous, she said.

It’s not that the nurses don’t care, she said, but “if I wasn’t there, they wouldn’t have a clue about what to do or how to do it or when to do it, or whatever. It’s dangerous. And it has to change,” she said. She said she knows she is not alone.

Gail Peet had a similar story. She said her daughter, 47, who is non-verbal, became extremely agitated when a feeding tube was inserted.

After her daughter was transferred to a nursing home, Peet said, she asked the staff to put a binding around the feeding tube to prevent her daughter from ripping it out.

The nursing home refused, on the grounds that the binding would constitute a “restraint,” Peet explained after the forum. The next morning, the staff discovered that Peet’s daughter had indeed ripped out the tube, which had to be re-inserted, causing her the additional pain of a second procedure.

In neither Peet’s nor Sroka’s case did there appear to be a plan for in-hospital or discharge care that addressed complications that could arise from individuals’ particular challenges as persons with developmental disabilities.

Rebecca Beaton

Rebecca Beaton

And Rebecca Beaton, who uses a wheelchair and must make a great effort to shape each word, said she, too, needs 24-hour care if she goes to the hospital because she has a speech problem and not everyone understands her. A support person seated next to her at the forum repeated her words for clarity.

John Susa, former chairman of the Rhode Island Developmental Disabilities Council and the father of a man with extensive needs, said there used to be a pool of state funds — outside the federal-state Medicaid structure — that was once used only in emergencies involving adults with developmental disabilities. He suggested that officials re-visit that idea.

Kerri Zanchi, Director of the Division of Developmental Disabilities (DDD),, stood at the podium of a meeting room in the Warwick Public Library, taking notes.

Kerri Zanchi

Kerri Zanchi

Medicaid separates Home and Community Based Services (HCBS) from hospital services to avoid duplication, Zanchi explained.

“But I hear you,” she told Sroka and Peet, that the situations they described were not about duplicate services.

Zanchi raised the possibility that an upcoming initiative, the creation of a “Health Home,” might open an opportunity to provide the kinds of supports that Sroka and Peet needed in the hospital and nursing home. A Health Home is a Medicaid-spawned concept for the management of services, not a bricks and mortar facility.

“It is so important for the individuals we love and support to have that consistency and continuity of care,” she said.

Earlier in the forum, Zanchi had explained the Health Home as an entity that would manage a program of individualized services around the unique needs and preferences of a particular person served by DDD.

FROM OLMSTEAD TO HEALTH HOMES


Medicaid created the Health Home option to separate the design and management of services from the funding and delivery of services. The goal is to avoid any conflict of interest that might compromise the quality of care.

The states must provide so-called “conflict-free case management” by 2022 to comply with the Medicaid Home and Community Based Services Final Rule, issued in 2014 to align Medicaid with the integration mandate of the Americans With Disabilities Act.

According to the 1999 Olmstead decision of the U.S. Supreme Court, the integration mandate says individuals with disabilities must have access to the supports they need to live regular lives in the least restrictive environment that is therapeutically appropriate – and that environment is presumed to be the community.

In line with Olmstead, as well as a 2014 consent decree in which Rhode Island has agreed to desegregate its daytime services for adults with developmental disabilities, state officials and the developmental disability community have embraced the idea of “person-centered planning,” which puts the needs and preferences of individuals at the core of any service plan.

But at the forum, Mary Beth Cournoyer, the mother of an adult son with developmental disabilities and a member of the Employment First Task Force, suggested “whole life” planning as a more encompassing term.

“How do we build lives? It’s 24 hours a day, seven days a week,” she said. The Employment First Task Force to which she belongs was created by the consent decree to serve as a bridge between the community and state government.

Zanchi said state officials will meet with their community partners, including families and providers, to ask them to help draft the design for a Health Home for adults with developmental disabilities before the application is submitted to the federal Medicaid program.

She said DDD hopes to have a Health Home up and running in about 12 months.

NEW WORKPLACE LAW AFFECTING SOME DD SERVICES

The forum also brought to light apparently unintended consequences of the Healthy and Safe Families and Workplaces Act, which went into effect last July 1, guaranteeing all workers get time off to go to doctors’ appointments and attend to other important personal and family needs. Companies with 17 or more employees are required to give paid leave.

Sue Babin of the Rhode Island Developmental Disabilities Council said that those who direct services for themselves or a loved one are receiving conflicting advice from fiscal intermediaries about whether the law applies to support staff for adults with developmental disabilities.

And some individuals who are advised the law does apply and are granting time off to their support staff are having problems finding substitute workers, Babin said.

Zanchi suggested a separate meeting with families that organize and direct their own services to discuss the impact of the new workplace law and any other inconsistent advisories they may be receiving from fiscal intermediaries, who control the individualized budgets the state authorizes to be spent on services for particular individuals.

RATE REVIEW GEARING UP

In an overview of changes at DDD, Zanchi announced that the division is about to embark on a review of its fee-for-service rate model for reimbursing private agencies that provide most of the developmental disability supports in state.

To that end, BHDDH has selected an outside consultant for the remainder of the current fiscal year and the new budget cycle beginning July 1.

Zanchi declined to name the contractor until a purchase order for services has been signed by the state purchasing office. She did say, however, that the consultant was not Burns & Associates, the Arizona-based company that helped a previous administration devise Project Sustainability That is the name for the existing fee-for-service model that doles out payments for daytime services in 15-minute increments that must be documented by each worker for each client served.

Zanchi said $500,000 for the consultant was budgeted in the current fiscal year, and an equal amount is in the governor’s proposal for the next budget.

To expedite the rate review, the contractor was selected as a “sole source” provider, without the months-long process or issuing a request for proposals and reviewing bids, Zanchi said.

NEW YOUTH AND TRANSITION ADMINISTRATOR

Zanchi announced that Susan Hayward, a veteran social casework supervisor, has been named to the new position of Youth and Transition Administrator, to coordinate a smooth shift for high school special education students moving into adult services.

Employment opportunities and other transitional servicesfor teenagers and young adults are a prime concern of the independent court monitor overseeing implementation of the 2014 consent decree, as well as an earlier interim settlement agreement affecting only youth and adults in Providence.

The 2013 interim settlement agreement addressed violations of the integration mandate of the ADA that involved a special education program at the Birch Academy of Mount Pleasant High School being used as a feeder program for a former sheltered workshop in North Providence called Training Through Placement. The agreement is set to expire July 1, 2020, at the discretion of the U.S. District Court.

BHDDH officials presented a PowerPoint of information covered at the public forum. To view it, click here.

The advocacy group RI FORCE (Rhode Island Families Organized for Reform, Change, and Empowerment) recorded the public forum and has posted the video, in three parts, on its Facebook page. To connect to the video, click here.

Challenging RI Consent Decree Deadline Looms Sept. 30 For Employment Of Young Adults With DD

By Gina Macris

The state of Rhode Island has already met or surpassed the 2018 supported employment goals for adults with developmental disabilities who were in sheltered workshops or segregated day programs when a federal civil rights consent decree was signed more than four years ago.

But it appears the state will not meet a looming Sept. 30 employment deadline for young people seeking adult services for the first time; specifically, 426 individuals who left high school special education programs between 2013 and  2016.

The prospect of the missed deadline – itself a two-year extension of the original -  suggests a lack of underlying funding, if not for specific employment–related services, then for the entire package of supports that newcomers usually seek when they look for an adult service provider.

For years, representatives of the three dozen private agencies reimbursed by the state Division of Developmental Disabilities (DDD) have told legislators that the amounts they are paid do not cover the actual costs of providing services.

Taking on new clients often means taking on additional debt, they have testified.

To be sure, DDD has pressed forward with reforms on a number of fronts, most prominently a program of enhanced reimbursement rates to private providers for supported employment services and performance payments for job placement and retention. The program was launched in January, 2017. 

 One agency that extended itself to embrace the new program, because officials believed it was the right thing to do, nevertheless ended the year with debt in that account in the high five figures, according to several sources.

In January of this year, the rules were relaxed to allow agencies to spend from the supported employment program to look for jobs for clients already on their caseload, providers have said.  

In 2018, young adult participation in the performance-based employment program  “has not significantly increased despite the increase in available funds for this population,” according to a second quarter report from the state to an independent court monitor in the consent decree case. The report has been obtained by Developmental Disability News.

The General Assembly initially allocated a total of $6.8 million in federal-state Medicaid funding that financed the supported employment program from January, 2017 through June, 2018, but more than half the money was not spent. At the end of June, BHDDH was scheduled to return to the state about $4.1 million, according to a House fiscal report.  State revenue accounts for about $2 million of the total.

As of June 30, a total of 231 young adults were employed, a figure that slightly exceeds the requirement that 50 percent of “youth exit” members have part-time jobs by that date.  

But it has taken the state four years to reach the half-way mark as it works toward the consent decree goal of full employment for young adults, leaving only three months to find jobs for the remaining half of the “youth exit” population – nearly 200 individuals. 

By comparison, the state has found part-time jobs for a total of 334 adults in segregated day programs – more than double the target for Jan. 1, 2019. In addition, 203 individuals who once worked in sheltered workshops now work in the community.  Those placements slightly exceed the 200 the consent decree requires by New Year’s Day.  (Taken together, the employment figures in the various categories do not include 18 clients whose past placements count toward consent decree goals but who no longer receive state services.)

RI DIVISIon of Developmental Disabilities

RI DIVISIon of Developmental Disabilities

Among all those who got jobs through the supported employment program, 81 percent have remained employed for at least six months, according to the state.

The state also closed its last sheltered workshop, at the John E. Fogarty Center of North Providence, in the second quarter of the year, according to the state’s report. All participants moved either to competitive employment or day programs, a DDD spokeswoman said.  

While the supported employment program is only about jobs, young adults seeking a service provider for the first time tend to want something else that is more comprehensive, particularly since they work only an average of about 14 hours a week, according to the state’s figures.

They and their families generally want one provider to give them an array of work and non-work supports that take into account all their needs and preferences.

Some choose to bypass a service agency altogether and manage their own program of services, hiring staff and arranging schedules while a fiscal intermediary pays the bills from a funding authorization approved by the state.  Self-directed individuals have reported difficulties getting services from the supported employment program.

Of about 500 so-called “self-directed” individuals and families, it’s not clear how many run their own programs by choice and how many first sought and could not find an agency to provide services appropriate to their needs. The number of self-directed programs has grown in the last few years, by all accounts. In all, about 3,700 adults receive services funded by DDD.  

The impetus for the supported employment program came from an order issued in May, 2016, by  U.S. District Court Judge John J. McConnell, Jr., who presides over the case.

But the supported employment program now in place does not address basic funding mechanisms for adults with developmental disabilities, which, according to the U.S. Department of Justice, incentivize a segregated system of day services. The DOJ criticized both the funding and regulatory structures in the 2014 findings that laid the groundwork for the consent decree.

During the past year, BHDDH has engaged providers, families and advocates in an effort to rewrite DDD regulations, with an eye toward giving consumers of services and their providers greater flexibility to individualize programs and help meet the “integration mandate” of the Americans With Disabilities Act, which the consent decree is meant to enforce.

The proposed changes were submitted late in 2017 to the Office of Regulatory Reform – part of the Office of Management and Budget – but the draft regulations have not yet been posted for public comment on the website of the Secretary of State. 

Kevin Savage, the licensing administrator at BHDDH, said August 21 he expects the Office of Regulatory Reform to complete its work and release the regulations any day.

The federal court monitor in the case, Charles Moseley, has often expressed concern about teenagers and young adults with developmental disabilities because, without appropriate supports, they are at risk for a life of isolation once they leave high school.

The 2014 consent decree originally required the state to find jobs for all members of the young adult, or “youth exit” category,  by July 1, 2016. When the deadline arrived, however, only 29 individuals had jobs in a group that, at that time, numbered 151. 

After the monitor,  Charles Moseley, ordered the state to make sure it counted all young adults who met eligibility requirements for adult services under state law, the size of the “youth exit” population ballooned. It is now 426.

McConnell, the presiding judge, extended the employment deadline for all young adults to 2018. He required half of them to have jobs by June 30 – a goal that has been met – and the remaining 50 percent to find work by Sept. 30.

Going forward, the state said in its report, DDD is planning amendments to contracts with providers to use unspent supported employment money from the first half of the year, as well as other strategies to improve service to the young adult group.

One promising initiative, say state officials, is a cooperative agreement involving the Department of Labor and Training (DLT) and as many as 11 providers of developmental disability services, the Sherlock Center on Developmental Disabilities at Rhode Island College, and the Rhode Island Developmental Disabilities Council to forge relationships with business and generate at least 77 new jobs. The Business Innovation Factory will provide enhanced technical assistance for the overall project, financed through workforce development funds administrated by DLT.

DDD also raised the possibility that some young adults may ultimately choose not to work, a decision that must be documented in a “variance” to the state’s Employment First policy for adults with developmental disabilities. Employment – and the variance process – will be discussed at a public forum Sept. 11 at the East Providence Senior Activity Center, 610 Waterman Ave., East Providence, on Sept. 11.

 

 

 

Friends of the Disabled to Hold Forum in Newport on DD Services in Rhode Island

By Gina Macris

Friends of the Disabled, organized by Newport County families who have members with intellectual or developmental disabilities, will host a forum on the future of Rhode Island’s disability service system Wednesday, Oct. 5, from 5 to 8 p.m. at the Newport campus of the Community College of RI. 

Candidates for the General Assembly have been invited to attend and address several questions about adult services that are provided by the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), according to Chris Semonelli of Middletown, co-director of the group.  

Most of the issues of concern to the parents are related to a history of declining funding.  The General Assembly, under pressure from the U.S. Department of Justice, the U.S. District Court, and Governor Gina Raimondo, added about $11 million to developmental disabilities for the current fiscal year to comply with a federal consent decree requiring community-based employment and day services. 

Wednesday's program will cover current and future options for both daytime and residential services. 

The consent decree does not apply to residential services, although parents have expressed concern about the future availability of group home placements, which have been hard to come by in recent years. 

Since January, BHDDH has been emphasizing shared living arrangements, in which adults with developmental disabilities live in private homes. BHDDH should provide better supports to families providing shared living, according to Jane Gallivan, who until Sept. 30 served as Interim Director of Developmental Disabilities. 

Task Force Members Say Interviews to Assess DD Needs in RI Apparently Used to Cut Funds

By Gina Macris

Four Rhode Islanders with developmental disabilities who all need nearly constant attention have had their residential funding cut by a total of about $125,000 a year.

The most recent scoring on an extensive questionnaire that is supposed to assess their support needs says they have become much more self-sufficient. Instead of having extensive needs, they now require only moderate supports, according to the results of the questionnaire, the Supports Intensity Scale, or SIS. 

But Tom Kane, the CEO of the agency that runs the men’s group home, says that if he withdraws $125,000 worth of residential staff hours for these men, “someone will get hurt.” 

“It’s not a position these four men should be in, nor should the agency be in this position,” Kane told state officials at a meeting of the Employment First Task Force July 12. 

Professionals acknowledge that, barring a traumatic event, the needs of a person with intellectual or developmental disabilities remain relatively stable over the course of a lifetime. 

Yet one chart prepared in 2015 by a healthcare consulting company under contract with the state shows the level of need changed for 47 percent of clients who had been re-assessed since the Supports Intensity Scale was introduced in 2011. 

For AccessPoint RI, a private service provider, those changes have resulted in a cumulative loss of $970.000 in developmental disability funding, roughly 12 percent of the budget, Kane said. 

If the tool is reliable, the score shouldn’t change dramatically,” Kane said. “Either the tool is not reliable, or you know it was all manipulated” to reduce pressure on state spending, he said.

Jane Gallivan, the interim Director of Developmental Disabilities in the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, said, “We definitely will take a hard look.”

Claire Rosenbaum, Adult Services Coordinator for the Sherlock Center on Disabilities at Rhode Island College, said she has received numerous reports that social workers conducting the SIS interviews challenge the accuracy of answers family members give to specific questions. 

Or, said Mary Beth Cournoyer, a parent member of the Employment First Task Force, the interviewer does not argue with family members’ answers but merely substitutes other ones.  This becomes apparent, she said, when parents review the completed assessment and see that the ratings on needs differ from the ones they had given. 

Cournoyer said parents need training on what to expect from a SIS questionnaire because the answers they give could have unexpected ramifications.  

For example, parents may say that their sons or daughters can dress themselves, when the reality is much more nuanced. Without someone to put away the out-of-season clothes so they are out of reach, individuals with disabilities may dress inappropriately for the weather, she said. They may be capable of dressing themselves, but may sometimes refuse to do so.

Cournoyer indicated that parents don’t realize they need to completely remove from the picture the supports they and other family members provide naturally before they say whether their sons or daughters can perform a particular task. 

Jennifer Wood, the Deputy Secretary of Health and Human Services, said “no topic has come up with more regularity than the SIS. We should have some focus groups.”  

Under order of the U.S. District Court, and to avoid a possible contempt hearing, BHDDH changed its SIS policy July1 –nearly two years after it first agreed to do so -to divorce the assessment of need from funding considerations. 

That new language is intended to resolve a conflict of interest noted by the U.S. Department of Justice in its 2014 findings that the state’s sheltered workshops and segregated day programs violatedthe integration mandate of the Americans With Disabilities Act, The 1999 as spelled out by the  1999 Olmstead decision of the U.S. Supreme Court.  

In a subsequent consent decree designed to remedy the ADA violations, the state agreed to change its SIS policy by Sept. 1, 2014. 

The policy then in place said, in part: “Starting January 1, 2013 BHDDH will assign service tiers (funding allocations) based on the results of an individual SIS assessment. 

A year later, the DOJ said in its findings: 

“Our investigation revealed that BHDDH staff maintains primary responsibility for administering the Supports Intensity Scale, and they are also part of the agency that administers the statewide budget for developmental disability services.This is a seeming conflict of interest because the need to keep consumers’ resource allocations within budget may influence staff to administer the SIS in a way that reaches the pre-determined budgetary result.” 

The DOJ  referred to similar warnings from the American Association on Intellectual and Developmental Disabilities, which created the SIS.   

The consent decree prohibits the SIS from being used as a funding mechanism.  

The new state policy, adopted July 1, reads, in part: “All decisions involving SIS tier assignments (levels of need) and any changes to SIS tier assignments are made solely on the basis of individual support needs as indicated by the SIS assessment in a manner that is consistent with individual’s support needs, separate and apart from resource allocation considerations.” 

How the change in policy will play out in practice is not yet clear.

According to a monitor’s report to the court in August, 2015, the state reported making the necessary changes in the administration of the questionnaire, including the re-training of interviewers, but complaints from parents have persisted. 

The disagreements over the SIS have resulted in families filing appeals. Most appeals are granted, according to Charles Williams, who retires as Director of Developmental Disabilities July 22. Data on the number of appeals, successful or otherwise, is not readily available. 

Wood and Gallivan promised members of the Employment First Task Force they would get to the bottom of the issue.                               

The Employment First Task Force, created by the consent decree, consists of members representing community organizations, adults who themselves have disabilities, and parents.   The task force, which holds public meetings, is intended to serve as a bridge between state government and consumers and families. 

The next meeting is August 12 at 2 p.m. at the Community Provider Network of Rhode Island, 110 Jefferson Blvd., Warwick.

 

RI Governor's New Request for More DD Funding To Go Before House Finance Committee Thursday

By Gina Macris

Rhode Island Governor Gina Raimondo has proposed adding nearly $16.9 million in state and federal revenue funds during the next fiscal year to shore up the state’s developmental disability system, which is under a federal court order to expand participation of adults with intellectual challenges in work and leisure activities in their communities to comply with the Americans With Disabilities Act (ADA). 

The addition of these funds, in four disability-related categories, will be heard by the House Finance Committee May 26, along with dozens of other proposed amendments Raimondo submitted in light of positive revenue estimates made a few weeks ago by state fiscal analysts. 

The new revenue reflects a change in the Governor’s approach to budgeting for developmental disability reforms, which originally depended on cost-shifting within the Division of Disabilities in the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

The disability-related amendments are:

  •  An additional $4 million - about equally divided between state and federal funds – to raise the wages of some 4,000 direct care workers for private agencies that provide most of the services to adults with developmental disabilities. The amendment would raise the total allocation for worker raises from $5 million to $9 million.
  • A $10 million increase in reimbursements to private providers, including $5 million in additional state revenue, to restore most of the cuts in housing costs made in the Governor’s original budget. That proposal projected 500 adults with developmental disabilities would move from group homes to shared living arrangements with individual families by June 30, 2017, although those estimates were later lowered to 300.  A total of 21 individuals have moved during the current fiscal year, according to the latest figures released by BHDDH. The added revenue will enable BHDDH to take a “more appropriate, more deliberative approach to transition individuals from group homes to shared living arrangements” in the future, according to Michael Raia, a spokesman for the Executive Office of Health and Human Services.
  • A total of $170,000 in state and federal funding for an ombudsman who would protect the rights of adults with developmental disabilities. Legislation has been introduced in both the House and Senate to define the office and its duties, in response to the death of a resident of a state-run group home in February.
  • Restoration of $4.4 million in state and federal funds used to pay for professional services like physical therapy in day centers, In February, the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) sought to shift the entire $2.2 million to Medicaid managed care organizations, but families complained that services had in fact been denied. The action was rescinded in March.

One of many provisions of a U.S. District Court order issued by Judge John J. McConnell, Jr. on May 18 is that “the State will appropriate the additional money contained in the Governor’s budget for fiscal year 2017 in order to fund compliance with the Consent Decree.” 

Any violation of that or any other requirement in the 21-point court order would allow the U.S. Department of Justice or the independent court monitor in the case to ask the judge for a contempt hearing. If the state is found in contempt, it will be fined a minimum of $5,000 a day for the duration of the violation, up to $1 million a year. 

In a telephone interview May 25, BHDDH director Maria Montanaro emphasized the need for the total $9 million Governor Raimondo has earmarked for wage hikes for direct care staff in the private service system, in addition to the other adjustments.  

Part of what the court wants is a redesign of reimbursement rates, which is more complicated than only raising wages, Montanaro said. The changes in reimbursement that the judge wants, however, can’t be accomplished without paying the workers more, she said. 

Raimondo’s budget originally envisioned an increase of $5 million in state and federal funds to pay for a 45-cent hourly wage increase for a workforce now making an average of roughly $11.50 an hour, according to testimony in recent House and Senate committee hearings. 

Montanaro could not say exactly how the additional $4 million in federal and state funds would further affect wages, but it would allow BHDDH management and agency representatives to discuss factors like the salaries of supervisors of direct care staff and the cost of employer taxes and benefits, she said. Those discussions would be held after the budget is adopted, she said. 

 Currently, private agencies are not fully reimbursed for those employer costs, spokesmen for the service providers have testified at recent budget hearings, and they operate at loss for each person they employ.