Madden to Leave RI Consent Decree Post; Lawyer Dianne Curran Named New Coordinator

By Gina Macris

Mary Madden, the coordinator of Rhode Island’s efforts to comply with a federal consent decree mandating a transformation of developmental disability services, will step down from that post at the end of March.

Mary Madden                          File Photo

In her place will be Dianne Curran, a longtime disability rights lawyer who has worked both in Rhode Island and Massachusetts, most recently as a consultant to the Massachusetts Department of Elementary and Secondary Education.

The announcement was part of a public community forum at the North Providence Senior Center Feb. 23 that also catalogued a series of system-wide changes undertaken in recent months, even though developmental disability services still fall short of the funding parents said is necessary to individualize supports for their sons and daughters.

And the audience was reminded that family stories are the ones that make the biggest impact with members of the General Assembly, who in the next several months will consider increases in the current budget and one for the fiscal year which begins July 1.

Curran, al awyer for both Rhode Island Legal Services and the RI Protection and Advocacy System (now the Disability Law Center) during the 1980s, also has served Massachusetts state government in various legal positions in education, human services and developmental disabilities departments. Her lengthy experience in that state includes a brief stint coordinating activities in response to consent decrees affecting adults with developmental disabilities and mental illness.

Madden, a veteran developmental disabilities professional in the private sector, became consent decree coordinator for Rhode Island in January, 2016, at a time when the state was just beginning to craft a response to the 2014 federal consent decree.

 On Thursday, Madden said that continuing as consent decree coordinator “was not in the long-term plan.”  Madden said she would not have returned to graduate studies in disabilitiesand public policy at Rhode Island College if she were not satisfied that that the state had gained momentum in responding to the consent decree. 

Most recently, Rhode Island recruited Kerri Zanchi as director of developmental disabilities after a six-month vacancy in that post.

Zanchi is a career administrator in developmental disability services, who, like Curran, has extensive experience in Massachusetts. She told the audience at Thursday’s forum that she was drawn to the Rhode Island job because of the state’s commitment to community-based services and the opportunity to make lasting change as the state shifts away from isolated day programs and sheltered workshops to comply with the consent decree. The decree requires the state to comply with the 1999 Olmstead decision of the U.S. Supreme Court, which ruled that services for all persons with disabilities must be desegregated in accordance with the Americans With Disabilities Act.

Thursday’s session, attended by about 30 people, was notable for its low-key, conversational tone, a sharp departure from the angry complaints that dominated such meetings during 2016.

In the last six months, developmental disability officials reported, they have made several improvements, including the following:

• speeded up the application process for adult services for individuals with developmental disabilities and adopted a policy to determine eligibility for adult services by the time special education students turn 17

• named a full time transition coordinator,  Carolee Leach, to work with high schools and the families of their special education students in preparing for adult life

• implemented a modest raise of about 36 cents an hour for direct care workers, as directed by the General Assembly

• introduced revisions to an assessment process used in determining individual funding allocations

• rolled out a supported employment incentive program for private service providers whohave placed 20 adults with developmental disabilities in jobs in the community since January

An independent court monitor in the consent decree case, however, has said in a recent report that the state must do much more to comply with the consent decree. (Click here for article on monitor’s latest report.)

At the meeting,  Zanchi, Madden and several other officials, including Jennifer Wood, General Counsel to the Office of Health and Human Services, heard from parents who said their adult children are lacking individualized community-based services.

Pat Abbate

Pat Abbate, who has a 46 year-old son with significant challenges, said the agency which serves him has good intentions but does not have enough financial resources to individualize services in the community

Tammy Russo, who has a 21 year-old son with disabilities, said he gets “no community services except for me.”

Greg Mroczek said 70 percent of his daughter’s program is in a day center isolated from the community.

Earlier in February, the same developmental disability officials heard a similar theme – a lack of adequate funding - from a mother who said she was forced into managing her daughter’s services because no agency would take her. Mary Genco said she asked 19 agencies, and each one said it had no nurse who wanted to deal with her daughter’s medical needs.

Genco, who is home with her daughter nearly all the time, said she represents growing minority of aging parents who are being “worn out” by adult children with extensive medical or behavioral support needs.

On Thursday, Pat Abbate put numbers on the funding gap. She said – and a check of the state’s Office of Management and Budget (OMB) website confirms – that funding for developmental disabilities lags behind the high of $260 million enacted by the General Assembly for the fiscal year between July 1, 2007 and June 30, 2008. At this time last year, the enacted budget was just shy of $231 million, according to OMB documents.

In response to a federal court order which said the state did not allocate enough money to implement the consent decree, Governor Gina Raimondo later pushed for increases, approved by the General Assembly, which boosted the bottom line to $246.2 million in the current fiscal year.

In her most recent budget proposal in January, Raimondo seeks an additional $4.4 million to finish the current fiscal year, for a total of $250.6 million. For the next fiscal year, beginning July 1, Raimondo has asked the General Assembly for $256.7 million.

Heather Mincey, a developmental disabilities administrator, said, “With our budget we try to advocate for as much money as we can.”

Brian Gosselin, chief strategic officer at OHHS, explained that the various departments of state government are active in their own advocacy, working with OMB and the Governor’s office, from July through December. But the state agencies don’t control the allocations, he said.

With the governor’s budget proposal now in the hands of the General Assembly, Gosselin and Mincey agreed, it’s vital that the community speak up.

“It’s important for families and advocates to be out there to speak to their representatives and let them know what your needs are,” Mincey said. 

A member of the audience, who said he works for a developmental disability service agency in Massachusetts, drove home Mincey's and Gosselin’s message.

The voice of families and advocates for developmental disability services is much stronger in Massachusetts than it is in Rhode Island, he said.

“When a family member calls up and gives them (legislators) a story, it makes such an impact,” he said. “I don’t think enough people get that point” in Rhode Island.

One In Six DD Jobs in RI Goes Unfilled; Raises Would Ease Crisis and Improve Service Quality

image by capitol tv 

Kevin Nerney of the Rhode Island Developmental Disabilities Council, left, and Maureen Gaynor, second from right, share pleasantries just before their testimony before the House Finance Committee on Feb. 8. Looking on are Gaynor's support worker, Melanie Monti, and Emmanuel Falck of the Service Employees International Union State Council.  Image by RI Capitol TV. 

By Gina Macris

Raising the pay of Rhode Islanders who serve adults with developmental disabilities is not only about helping these poverty-level workers pay their bills, according to testimony before the House Finance Committee Feb. 8.

The proposed raises also will reduce staff turnover and, in turn, improve the quality of life for some of the state’s most vulnerable citizens, Donna Martin, executive director of the Community Provider Network of Rhode Island (CPNRI), told the legislators. 

Kerri Zanchi, the new director of the Division of Developmental Disabilities, agrees with Martin’s assessment. Zanchi says the pay hike is not only an “investment in the direct service professional, but an investment in our community" and in high quality services.  

She estimates that the wage increase will amount to an average of 42 cents an hour, and says that provider agencies are now experiencing a staff turnover rate of about 33 percent.

Carol Dorros, the mother of a 21-year-old man with behavioral issues and other complex problems, knows firsthand the value of support staff retention. When her son was still in high school and receiving some adult services from a private agency, his support worker changed four times during a single academic year. As a result, he made “no progress” from September to June, Dorros said.

 Maureen Gaynor rolled up to the speakers’ table in a power chair and used a computerized voice to speak the text she had written with a “headstick,” a pointer attached to a band around her head.

These people deserve higher pay, Gaynor said, explaining that support staff sometimes must help with the most intimate care, such as bathing, dressing and using the toilet.

And she reminded the legislators that she would not have been able to attend the hearing without an aide willing to drive her to the State House and get her to the basement hearing room.

After she spoke, Kevin Nerney of the Rhode Island Developmental Disabilities Council reinforced her remarks:  “When you help someone eat, drink or bathe, you need to have a really good relationship with that person. We’re not talking about folding shirts at the Gap or flipping burgers at McDonald's,” said Nerney.

At AccessPoint RI, a service provider, the starting salary is $10 an hour, or $22,000 a year, said the agency’s executive director, Tom Kane. The average pay was $10.82 an hour until the current fiscal year, when the General Assembly set aside $5 million for raises for developmental disability workers – the first pay increases since 2006, Kane said.

The added funding resulted in a 36-cent hourly increase, raising the average to $11.18, according to calculations made by service providers and others.

When Kane reviewed the the roster of employees at the time his agency processed the raises last fall, he said he was heartbroken to find a 30-year employee who was to receive a total of $13.10, with the pay bump.

Kane and others indicated they believe that a “15 in 5” campaign to raise the pay of direct care workers to $15 in five years (by July 1, 2021), is simply not enough.

Kane alluded to a drive launched by State Sen. Louis DiPalma, D-Middletown, last fall when he asked Governor Raimondo to include a raise for direct care workers in her budget proposal for the next fiscal year.. While she has done so, her $6.2 million set-aside for wages is about $$600,000 shy of what DiPalma requested.

Kane said raises should not only be based on a percentage increase.

 “A four or five percent increase on an insufficient wage is an insufficient increase,” he said.

If the minimum wage increases to $10.50 an hour, as Governor Raimondo has proposed, “and we give 5 percent” raises, Kane said, “we’re paying minimum wage again.”

Kane took issue with figures presented by Linda Haley of the House Fiscal Staff that the raises in the current budget also bumped up pay for supervisory personnel.

He said the raises all went to direct care workers, (as stipulated in current state budget.)  Some agencies, including AccessPoint, used other funding sources to provide raises or bonuses to supervisory employees.

At AccessPoint, Kane said, front-line supervisors spend half their time doing direct care anyway.

“It is incredibly important that this bill passes, hopefully with more money in it,” to support not only those providing direct care but people who perform other important tasks, like writing clients’ state-mandated individual support plans, which are akin to road maps for services that are specific to each client. Most of these employees “have not had a raise in 11 years,” he said. “I don’t know why they stay.”

Emmanuel Falck of the Service Employees International Union (SEIU) State Council represents 270 workers at the Arc of Blackstone Valley. One of them, a 52- year-old woman with 20 years’ experience in the field, used to be able to make ends meet by working 60 to 65 hours a week, he said.

But after an 18-month bout with cancer, the most she can now work is 20 hours a week. And the last vacation she had was three days in Washington, D.C., in 2000, Falck said.

He said the proposed 42-cent increase to the hourly rate would be much appreciated, but the state needs to move faster to raise workers’ pay to a living wage.

“I urge this committee to bump it up as fast as possible,” he said, proposing a $15 hourly wage by 2019 instead of 2021. As it is, direct support workers living in Rhode Island will be able to cross the state line to neighboring Massachusetts and do the same work for $15 an hour on July 1, 2018, Falck said.

Donna Martin, the CPNRI director, said that developmental disability service providers face a “tremendous crisis” in competing for the same pool of workers who serve elderly clients, thanks to a growing number of aging baby-boomers.

On average, the 27 providers belonging to CPNRI cannot fill one in six job openings, creating a vacancy rate of about 16 percent, she said. During exit interviews, workers say that they love their jobs but can’t feed their families with what they are paid, according to Martin.

As a result of the vacancies, employers are forced to spend money on overtime that they would rather put into worker pay and training, Martin said.

“I appreciate your sensitivity to the struggles of our staff,” Martin told the finance committee members.  “They are where the rubber meets the road when it comes to quality.”

Chris Semonelli of Middletown, the father of a 14-year-old girl with autism, put some historical context around the discussion of the wage proposal.

From 2006 through 2011, the budget for developmental disability services was reduced 20 percent, Semonelli said, quoting a profile of the system written by the Sherlock Center on Disabilities at Rhode Island College in 2013. And the services are not designed with an eye toward results. In the current design, more money gives more of the same service, he said.

That said, Semonelli said he strongly supports Governor Raimondo’s proposed wage increase in the next budget, as well as the “15 in 5” campaign. The governor’s plan for the next fiscal year “is a start,” said Semonelli, who also is co-director of an advocacy group called Friends of the Disabled on Aquidneck Island.

Although Wednesday’s hearing sounded like a budget discussion, it focused only on Article 23 – one of 24 chapters in the overall fiscal package Raimondo has submitted to the General Assembly.

The provision would require a one-time increase in the base pay of direct care workers, “in an amount to be determined by the appropriations process” and also require the Office of Management and Budget to perform an audit to ensure that the raises go only to those workers. 

Plan To Boost DD Worker Pay in RI Gets House Finance Hearing Wednesday

By Gina Macris

Rhode Island Governor Gina Raimondo’s proposed pay raise for workers providing direct care to adults with developmental disabilities will get a hearing before a subcommittee of the House Finance Committee Wednesday, Feb. 8.

Raimondo has set aside $6 million for 5 percent wage increases for these workers, who are now paid an average of $11.18 an hour. Her proposal would increase their hourly pay by about 56 cents, to an average of $11.74.

The governor's budget says that poverty-level wages for these workers have resulted in a “hiring crisis” that “impedes the ability of community agencies to implement the state’s obligations” under provisions of a federal consent decree mandating reforms in the developmental disability service system to comply with the Americans With Disabilities Act.

Low wages have led to annual turnover estimated at 33 percent,  with agencies experiencing staff vacancy rates of up to 25 percent, leading to high overtime costs and worker burnout, according to the budget document. The shortage of workers in Rhode Island is all the more challenging because neighboring Massachusetts and Connecticut pay about $1 to 2 dollars an hour more for the same work..

Moreover, Massachusetts has committed to a $15 hourly rate by 2018 for direct care workers in field of developmental disabilities. There is a similar drive in Rhode Island to raise workers’ pay to $15 in five years, but the budget provision to be heard Wednesday deals only with the fiscal year beginning July 1.

The hearing is scheduled after the full House ends it session, he end of the House session, about 4:30 to 4:45 p.m. and it will be held in Room 35 in the basement of the State House.

Kevin Nerney, spokesman for the Rhode Island Developmental Disabilities Council, urges individuals concerned about the stability of the developmental disability service system to attend the hearing or write or call members of the legislature.  Click here for the meeting agenda, which includes a link to the full text of the proposal to increase wages, as well as another budget article to be heard the same day in connection with the duties of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals in treating substance abuse.

Written testimony also may be submitted to the House Finance Committee through its clerk, Christopher O’Brien, at cobrien@rilegislature.gov.

Governor's Budget Would Add Total of $10 million For Developmental Disabilities Through June, 2018

By Gina Macris

A new $6.8-million incentive program, intended to encourage service providers to help Rhode Islanders with developmental disabilities get and keep jobs, will become a permanent fixture of the annual budget, according to Jennifer Wood, Deputy Secretary of Health and Human Services.

That is one of several areas of Governor Gina Raimondo’s budget proposal that indicates the state is moving to increase services for individuals with developmental disabilities in keeping with a 2014 consent decree, which requires Rhode Island to expand their access to employment and other community activity over a ten-year period.  

Wood and other key officials, who are involved in reinventing the state’s developmental disability service system, elaborated on Raimondo’s proposed budget and the way it reflects evolving trends and programs during an hour-long interview with Developmental Disability News on Jan. 24. 

Between now and the end of the next fiscal year, which concludes June 30, 2018, Raimondo proposes to increase spending for developmental disability services by about $10 million, excluding restricted funds and capital expenses.

Of that total, $6 million in federal and state Medicaid funds would be used for five-percent increases to the average wages of direct support workers, and much of the rest would reflect more expensive levels of services needed by individuals with developmental disabilities than have been recognized in the past.

Overall, Raimondo asked the General Assembly to increase the current allocation for developmental disability services by nearly $4.4 million in this fiscal year, which ends in June, from about $246.2 million to $250.6 million.

Excluding restricted and capital accounts, the added amount available for services before June 30 would be nearly $3.8 million, according to a budget breakdown provided by EOHHS. In the budget cycle which ends in June, 2018, the Governor would add a total of about about $6.1 million, for $256.7 million in all spending on developmental disability services. Excluding the restricted and capital funds, the increase would be about $6.6 million.  

All Funds vs Operating Budget

TABLE COURTESY OF EOHHS

    GR=state funds     FF= federal funds

The primary reasons that developmental disability services are expected to be more costly include:

•  The need for a better-paid, more stable workforce, funded with a 5 percent increases in direct care wages, or a total of $6 million 

• · Additional staff time spent on job hunting and job support for their clients, reflected in the new $6.8 million individualized supported employment program that is already part of approved spending

• A new version of the process for assessing individual needs appears to indicate that more supports are required than have been recognized in the past.

Supported Employment Program Has Begun Operations

Until now, all individuals with developmental disabilities who sought help in finding jobs in the community had to give up other kinds of services, with the dollar value of their personal funding authorizations remaining the same. But those enrolled in the new “person-centered” supported employment program, now accepting applicants, will get job support in addition to their other services, according to an EOHHS spokeswoman. The program is expected to involve about 200 clients.

The supported employment program was funded by the General Assembly with a $6.8 million allocation for the current fiscal year. But that sum has been untouched while the state has figured out how the program will work.

The program is poised to make its first disbursements to service providers, including incentive payments for the placement of two individuals in jobs in January. said Tracey Cunningham, Chief Employment Specialist in the Division of Disabilities at the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

The original $6.8 million allocation is expected to fund the incentive program into the second half of the fiscal year ending in June, 2018, according to an EOHHS spokeswoman.

The program staff will evaluate the results of the first operational year to determine how much money it will need to continue, said Brian Gosselin, the Chief Strategy Officer at EOHHS. Wood promised assured continuous funding for the program.

“What we hope to learn in the first 12 months of this brand new program is what impact $6.8 million will have,” Gosselin said. It provides one-time incentive payments when staff complete a specific training program and clients are placed in jobs. The program also pays bonuses for employment retention, in two installments, after 90 and 180 days.  

Gosselin said he and his colleagues will determine whether the $6.8 million allocation was enough and will identify the successful features of the program that can be used in the second year.

He and Wood were asked why the 22 providers participating in the program must continue to use a fee-for-service reimbursement model which requires them to bill for daytime services in 15-minute increments.

Gosselin said that is the funding model that the federal Centers for Medicare and Medicaid services has approved for daytime developmental disability services in Rhode Island.

“In order to make any adjustments to that methodology we would have to go through a very long approval process with the federal government,” he said.

But he emphasized that the new performance-based aspect of the incentive program is “what we hope to learn from.”

A discussion of the fee-for-service model and whether it works for Rhode Island is part of a larger conversation – redesigning and renewing the state’s Medicaid waiver, which is expected to occur in 2018, Gosselin said.

Wood emphasized that she didn’t want to conflate two things. “One is Medicaid billing” and the other is “programmatic contracting,” she said.

“What we set forth to do was to create the first instance in Rhode Island of performance-based contracting for outcome-based services provided to individuals with developmental disabilities. We are super-excited about that,” she said. “That’s a whole new direction for this world.”

Wood also elaborated on the design and roll-out of supported employment in the context of a U.S. District Court order reinforcing the 2014 consent decree, which had set an Aug. 1 deadline for implementation of the performance-based supported employment program.

“Implementation is an ongoing activity,” Wood said. “We met the requirements of the Court order by filing with the monitor and the Court and the DOJ (U.S. Department of Justice) the programmatic requirements” for the supported employment services program last summer, Wood said. The “person-centered” program is designed to put the needs and preferences of the client at the center of the job-hunting and support process.

Since the summer, state officials have met with providers, drawn up contracts and finalized them, she said. The next phase of implementation is enrolling clients, Wood said.

“We are actually quite proud of the fact that we can bring this program up in what in government circles is lightning speed,” she said, “and to do it in a really reliable, viable, and responsible way.”  .

“I know it may not appear that way to the public,” Wood said.  She apparently alluded to public criticism of the program, which was not completely fleshed out when it was first presented to providers in November and was not widely understood by families who direct individualized services for a loved one.

Wage Increase Intended to Help Stabilize Workforce

Governor Raimondo’s proposed $6 million for wage increases for direct care workers would provide about 5 percent more in the hourly rate, before taxes, in the fiscal year beginning July 1.

For the current fiscal year, the General Assembly approved about $5 million for a pay raise which boosted the average hourly rate from $10.82 to $11.18.   Another 5 percent would raise the average hourly rate by 56 cents to $11.74.

Governor Raimondo’s latest proposal also would provide an increase for employer-related costs for direct care workers, Wood said. 

Raimondo had been asked to include another pay increase for direct care workers in her budget plan from State Sen. Louis DiPalma, D-Middletown, First Vice Chairman of the Senate Finance Committee.

DiPalma said in a recent telephone interview that he considers Raimondo’s wage proposal for Fiscal 2018 the first step in a five-year effort to raise direct care salaries to $15 an hour.

In the meantime, the minimum wage may well be on the rise as well. The Governor’s budget proposal would increase it from $9.60 to $10.50, while Rep. Leonidas P. Raptakis, (D- Coventry, West Greenwich, and East Greenwich) has countered with a $10 minimum wage bill.

 DiPalma was asked whether a $15 hourly rate would be enough for the direct care workers in five years.

He said he plans to introduce legislation this year to link the wages of direct care workers to the consumer price index.

“We can’t tie the hands of future legislatures,” by committing them to specific dollar amounts in advance, DiPalma said.

“It’s a case of wanting people to have an appreciation for the intent of what we want to do” in placing value on the work of those who care for some of the state’s most vulnerable citizens, he said.  

A spokeswoman for the Executive Office of Health and Human Services said DiPalma and Senate President M. Teresa Paiva Weed, who backs the so-called “15 in 5” plan, “have been important partners in advocating for investments in our direct care workforce.”

“We look forward to working with our partners in the General Assembly to implement our second wage increase this year, as well as increases over multiple years as possible,” said the spokeswoman, Sophie O'Connell.

A year ago, a conference hosted by the Sherlock Center on Disabilities at Rhode Island College concluded that higher wages are a critical component in stabilizing the direct care workforce nationwide. In Rhode Island, the average annual turnover is about one third, according to the Community Provider Network of Rhode Island. That means that an adult with developmental disabilities, who relies on a good relationship with caregivers, can expect that every year, one out of every three staffers will  to the job.

Revised Individual Assessment Suggests Greater Cost

Unexpected  increases in billing from private service providers, as well as higher projections for future costs, would add an additional $5 million to federal and state-funded Medicaid-services for existing clients in the current fiscal year, according to the Governor's budget brief. (Some of that net increase would be offset by other savings.) 

In November, the Division of Developmental Disabilities began using an updated version of an assessment called the Supports Intensity Scale (SIS) in determining the needs of individual clients. Those assessments are used to assign individual funding authorizations for support services.

“I personally am really thrilled” over the implementation of the new version, called the SIS-A, Wood said. “I know all my colleagues in government feel the same way about it.”

She acknowledged that “there have been all sorts of questions in the past about the validity and reliability of the state’s approach to implementing the SIS.”

And it’s an emotional topic because it’s not just an evaluation, but one linked to funding supports for a loved one, she said.

Since the SIS was implemented in 2011, time-consuming appeals of the results and the corresponding funding levels have become common, and appeals were often granted.

In 2014, the DOJ criticized the way the SIS was being implemented in the findings that laid the groundwork for the consent decree.

“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 said at the time. 

In the recent interview, Wood said, “We feel much more comfortable and confident about the validity” of the SIS-A.

As it has been explained to her by the experts, she said, the new versions include refined questions that address some of the more complex needs that “people did not feel were being captured in the original version.”

Wood indicated that in general, higher scores on the SIS-A have  prompted developmental disability service officials to project higher individual funding authorizations. 

Apart from three new questions asking whether a client has hypertension, allergies or diabetes, the SIS-A adopts a risk assessment which includes five overarching questions with multiple parts intended to gauge critical health needs, self-injurious behavior or community safety issues. The questions on the risk assessment were released by the Division of Developmental Disabilities in the last week. Professionals say that with proper support, such risks can be overcome.

A lot of effort already has gone into retraining interviewers, Wood said, although “it will take us two to three years to find our way fully in this new assessment.”

Heather Mincey, social services administrator in the Division of Developmental Disabilities, said the training program has addressed the way interviewers ask questions. The Division of Developmental Disabilities is trying to be responsive to families, clients, and service providers who may not feel like they’re being heard or are unsure what kind of information the interviewer is trying to elicit, she said.

At the same, the Division of Developmental Disabilities is continuing an initiative begun a year ago to save about $1.7 million in Medicaid funding, including almost  $846,000 in state funds, from existing individual funding authorizations that exceed levels indicated in past SIS assessments.

There were so many complaints about the SIS in the latter part of 2014 and the first months of 2015 that BHDDH suspended an effort to rein in the exceptions in the fiscal year that ran from July 1, 2015 to June 30, 2016.  But the initiative to  to reduce those exceptions resumed for the current fiscal year, which began last July.

Wood said that budget figures for the current fiscal year and the one ending June 30, 2018, twice listing $845,750 in savings from realignment of individual funding authorizations, don’t represent a new initiative, but a continuation of the one already underway.

The appeal process remains an option for those who disagree with their allocations.

A new policy enacted by the state last July to respond to a judicial order says that all SIS assessments will be based solely on support needs. It also says that only the Director of Developmental Disabilities has the authority to grant authorizations that exceed SIS levels. Until now, appeals have been decided by a team of administrators.

Wood and other state officials have said they hope the SIS-A will result in a reduction in the number of appeals.

RI Governor Raimondo Asks for Wage Hikes for Direct Care Workers in FY 2018 Budget

By Gina Macris

Governor Gina Raimondo is asking the General Assembly to approve a total of $11 million for raises for front-line human services workers who provide homecare or who work directly with adults with developmental disabilities.

The proposal was one of the highlights of a budget plan that includes nearly $1.4 billion in human services funding in an overall fiscal package totaling about $9.3 billion for the2018 fiscal year, which begins July 1. The budget was delivered to the General Assembly Thursday, Jan. 19.

“For home and community-based placements to be successful, the state must have a robust provider network and support system, “ Raimondo said in a statement. ” To build this capacity, workers with the right skills must be paid enough to fill those jobs,” she said.

Jonathan Womer, director of the Office of Management and Budget, told reporters at a budget briefing that keeping direct care workers on the job has been “really difficult.”  Workers in equivalent jobs in Massachusetts make about $13.00 an hour.

The added money for wages includes a 5 percent hike for workers who provide direct services to adults with developmental disabilities, or 56 cents an hour, bringing their average hourly pay to $11.74. Homecare workers would see a 7 percent, or 78-cents-an-hour increase, for a new average hourly rate of $11.96

Raimondo also has proposed raising the minimum wage from $9.60 to $10.50 an hour, an increase of 90 cents.

Since July 1, developmental disability and home care workers have been paid an average of $11.18 an hour, according to figures released by State Sen. Louis DiPalma, D-Middletown. In October, DiPalma asked the Governor to include additional raises in her next budget as part of a five-year plan to raise the pay of front-line workers to $15.

Last May, Raimondo proposed pay hikes in apparent response to pressure from the U.S. District Court, which is monitoring implementation of a 2014 consent decree designed to desegregate day services for adults with developmental disabilities.

Judge John J. McConnell, Jr. earlier had ruled that the state did not spend enough money to provide the community-based services required by the consent decree and risked being held in contempt of court if it did not sufficiently fund supported employment programs.

The consent decree runs out in 2024, and McConnell is still holding periodic reviews of the case. The next hearing is Friday, Jan. 27.

To encourage supported employment, the General Assembly added $6.8 million in the current budget for job coaching and related activities, but that performance-based incentive program is just getting off the ground, five months after a court-ordered deadline.

Budget briefing materials released Thursday were silent on whether the program will continue, and state officials were not immediately able to respond to detailed questions.

Service providers have said the incentive program, set up to provide one-time bonuses for staff training, new job placements, and job retention, is a distraction from the fundamental problem that agencies continue to be chronically underfunded.

Raimondo asked the General Assembly for an additional $4.9 million for caseload growth in fiscal 2018. The General Assembly spurned a similar request last year, with the House leadership saying the numbers showed a stable caseload, at about  4,000 clients. 

House Speaker Nicholas Mattiello has said that if and when the caseload increases, the General Assembly will listen.

In the last few months, the independent court monitor in the consent decree case has required the state to identify all young people over the age of 14 who likely will be eligible for adult developmental disability services in the next seven years, but the state has not yet released firm numbers.

In all, Raimondo would add nearly $4.4 million to the bottom line to cover developmental disability spending for the remainder of the current fiscal year and $6 million more in the next budget.

Those increases in developmental disabilities apparently would by offset by cost-shifting to The Department of Human Services, as well as cuts in funding authorizations to individuals who receive developmental disability services.

Raimondo’s budget message suggested that developmental disability officials plan to save about $850,000 in state revenue during the remainder of the current fiscal year and an equal amount in the next one by cutting individual funding authorizations to adults with developmental disabilities to “appropriate resource allocation tiers.”  

In the past few years, such attempted cuts have been routinely contested  -- often successfully -- by service providers and families in time-consuming appeals involving a controversial individual assessment called the Supports Intensity Scale.

All developmental disability services are funded by a combination of federal Medicaid and state revenue at a rate of roughly 1 to 1, and the governor’s request for increases come in spite of increased pressure on overall Medicaid costs.

The current authorized spending level for all developmental disability services is $246,242,419. Raimondo’s supplemental budget would raise that total to $250,626,970 by June 30. The spending limit for Fiscal 2018 would increase yet again to $256,707,760, according to her plan.

Developmental disability services make up more than 60 percent of the total BHDDH budget, which is currently $385,632,555. Raimondo would like an additional $15,457,021 for a total of $401,089,575 to close out the current fiscal year. The bottom line for the next fiscal year would be $394,366,931.

Raimondo To Propose Wage Increase for DD and Home Healthcare Workers in Next Budget

By Gina Macris 

(This article has been corrected. Please see the note at the end.) 

In her State of the State address Tuesday, Jan. 17, Rhode Island Governor Gina Raimondo said that her budget for the next fiscal year will include a second round of raises for home health care workers and those who provide direct support for adults with developmental disabilities.

Raimondo said that in 2016, the state gave homecare and direct care workers “their first raise in nearly a decade.” She acknowledged the leadership of Senate President M. Teresa Paiva Weed in that effort.

“And I propose that we give them another raise this year. It will make us more competitive with Massachusetts and help us make sure we have the highest quality people taking care of our Rhode Island families,” Raimondo said.

In 2016, the Governor and the General Assembly faced pressure from the U.S. District Court to put more money into developmental disability services.

After an evidentiary hearing in the spring, Judge John J. McConnell, Jr. ruled that there was not enough money in the state budget to comply with provisions of the Americans With Disabilities Act which require community integration of individuals with disabilities. At the same time, he did not say how much money was lacking,

The General Assembly ultimately approved a budget amendment submitted by Raimondo that added $5 million for developmental disability wages, raising the hourly rate from $10.82 to $11.18. Half is Medicaid money and half is state revenue.

Rhode Island’s minimum wage is $9.60 an hour, although Raimondo signaled on Tuesday that her budget will contain a proposal to raise it to $10.50 an hour. 

On Tuesday, Raimondo gave no fiscal details of her plan for raises. She will unveil her budget proposal tomorrow, Jan. 19, at 4 p.m.

But her speech indicates that she has at least opened the door to a call from State Sen. Louis DiPalma, D-Middletown, for a five-year commitment to increase the hourly wage of developmental disability workers to $15.

DiPalma has asked the Governor to add 76 cents in the average hourly rate to increase it to $11.94 in the next budget. That would mark the first installment in the five-hear plan, according to DiPalma. For developmental disability workers alone, he said, the cost would be an estimated $6.8 million in fiscal 2018..

DiPalma, first vice-chairman of the Senate Finance Committee, unveiled his so-called “15 in 5” plan last October with the backing of Paiva Weed and the chairman of the Senate Finance Committee, Daniel DaPonte.

(This article has been updated to say that wage increases for direct care workers proposed by Governor Raimondo for Fiscal 2018 would be the first installment in a five-year plan to raise their pay to $15 an hour. The original version incorrectly said the initiative marked the second installment in the "15 in 5" plan. )

Incentive Program for DD Service Providers Closer to Launch, But Lags Months Behind Court Deadline

By Gina Macris

Despite some progress, implementation still lags months behind schedule for a Rhode Island program intended to boost employment of adults with developmental disabilities.

Nor does the design of the program cover the full cost of staff training that is a prerequisite for participation, according to comments made at the monthly Employment First Task Force meeting Jan.10. The new employment supports program does reward private developmental disability service providers that already have trained staff at their own initiative.  

The General Assembly has allocated $6.8 million in the current budget for the incentive program to satisfy requirements of a 2014 federal consent decree requiring the state to boost its efforts to provide employment supports to adults with developmental disabilities.

Einloth                                                             photo by anne peters

But as the second half of the fiscal year gets underway, it appears that direct service providers have not yet been given the green light to bill for reimbursement under provisions of recently negotiated performance-based contracts, said Kim Einloth, a senior director at Perspectives Corporation.

A total of 19 contracts have been negotiated among 36 service providers operating in Rhode Island, a spokeswoman for the Executive Office of Health and Human Services said last week.

Despite an early morning snow storm Friday, Jan. 6, 18 agencies participated in a fair attended by some 40 special education high school students and another 40 young adults in the process of moving from school to adult life, according to the EOHHS spokeswoman. She anticipated the incentive program will serve about 200 adults with disabilities.

The incentive program was to have been in place Aug. 1, according to an order of the U.S. District Court.

Einloth said during the task force meeting that the director of the Community Provider Network of Rhode Island, Donna Martin, has conveyed her concerns about the program to the independent court monitor in the case, Charles Moseley.

Martin has not responded to requests for comment sent by email from Developmental Disability News.

At the task force meeting, Einloth and Kiernan O’Donnell of the Fogarty Center, another service provider, said that the program would pay a one-time bonus of up to $810 for each staff person trained to offer job-related supports, assuming that person serves ten clients.

O'Donnell          Photo by anne peters 

So-called “self-directed” families who design programs for a single individual would get only $81 to cover staff training, O’Donnell said. Neither figure fully supports an investment of 40 hours of class time and extra field work that is necessary for certification, he said, despite EOHHS assertions to the contrary. 

Claire Rosenbaum, Adult Services Coordinator at the Sherlock Center on Disabilities at Rhode Island College, said self-directed families were given four days in November to figure out whether they should apply for the program. The written materials explaining the program were so technical that parents didn’t understand them and set them aside, Rosenbaum has said. As part of her job, she has email contact with some of the self-directed families.

When the application process opened, in November, the state was unable to tell providers exactly how many bonuses they would receive under terms of the incentive program, according to Einloth, although that gap has been clarified.

According to the contracts, once staff are trained, agencies receive bonuses for completion of the course, and may bill at enhanced rates for employment-related services to new clients, Einloth and O’Donnell said in an interview after the task force meeting. .

But the billing must be done in 15-minute increments, they said, in the same fee-for-service reimbursement model that has been criticized by the U.S. Department of Justice and the court monitor as being inflexible.

Other features of the program pay one-time bonuses when clients get jobs and remain employed for 90 and 180 days. 

In the meantime, agencies do not receive enhanced rates for providing the same employment-related services to current clients – only new ones approved by the state as participants in the incentive program, O’Donnell and Einloth said. O’Donnell said agencies now routinely file appeals, one by one, to get better reimbursement for employment-related services for individual clients. O’Donnell said he understands most of those appeals are granted.

The new incentive program appears to draw attention away from the fact that reimbursement rates are too low across the board for providers to do their jobs, O’Donnell said.

He and Einloth also are co-presidents of the Rhode Island Association of People Supporting Employment First, a professional organization.

Meanwhile, a task force member with developmental disabilities, Andrew Whalen, told his colleagues that he had received a letter a day earlier, on Jan.9, notifying him he is eligible for services from BHDDH. Whalen applied nearly a year ago, after the death of his mother in January, 2016.

He first mentioned the long wait for a decision at last month's meeting of the task force, when the discussion touched on the state’s efforts to render speedy eligibility decisions and the effect of continuing human services computer problems on services for adults with developmental disabilities.

.In December, Whalen also said the new computer system – called UHIP – deleted a separate application for food stamps that he had filed. At the most recent task force meeting, he said his application was “on hold” because, thanks to his generosity of his sister, the balance in his checking account was too high. 

Kevin Nerney, chairman of the task force, said that Whalen could solve the problem by moving the excess money to an ABLE account. ABLE, which stands for Achieving a Better Life Experience, is a new type of savings account authorized by Congress and the General Assembly that allows individuals with disabilities to set aside money without compromising their Social Security or Medicaid benefits.

Nerney said ABLE began accepting applications from Rhode Islanders only in recent days at https://savewithable.com Paper applications will be available in March, he said.  

New UHIP Computer in RI Seems to Undermine Court-Ordered Timely Benefits For DD Population

By Gina Macris

andrew whalen                                                  all photos by anne peters

Andrew Whalen, a 31 year-old Rhode Islander on the autism spectrum, applied for support services in the wake of his mother’s death in January. He’s still waiting to hear whether he is eligible.

When a psychologist interviewed him Nov. 16, she said the state’s Division of Developmental Disabilities was backed up addressing cases involved in a federal consent decree and that his application was “not an emergency,” Whalen said.

Last week, one of his sisters took him to the Department of Human Services (DHS) to check on the separate application he filed two months ago for food stamps. He said he learned that the state’s new $364 million computer system had deleted his records and the only way he could remedy the problem was to file for benefits all over again. 

Whalen represents adults with developmental disabilities on the Employment First Task Force, created by a 2014 federal consent decree as a bridge between the state and the community as Rhode Island moves to comply with the Americans with Disabilities Act.

Under terms of the consent decree, Rhode Island must move away from segregated sheltered workshops and day programs toward supported employment in the community and integrated non-work activities over a ten-year period.

Whalen explained his plight Tuesday, Dec. 13, to his colleagues on the task force at a meeting in Warwick, and to the federal court monitor in the consent decree case, who was listening via conference call.

The monitor, Charles Moseley, wanted to know how many applicants for adult developmental disability services might be affected by the computerized Unified Health Infrastructure Project. UHIP, as it is known, is supposed to process all the state’s social service benefits, including the Medicaid money used for developmental disability services.

Sue Donovan of the Rhode Island Parent Information Network (RIPIN) ventured an estimate – about 100 – but asked Moseley to confirm figures with the state. 

RIPIN works with families of high school students with developmental disabilities who are making the transition to adult services. Donovan said she knows of one person who was authorized by BHDDH to start receiving developmental disability supports September 1, but the Medicaid funding didn’t actually didn’t actually clear UHIP until Monday, Dec. 12.

Donovan said there are 23 young adults who have been deemed eligible for developmental disability services who are waiting for their funding to come through. 

In addition, about 83 young people are expected to be found eligible and are “heading for the same problem,” she said.

“I’m sure the Division (of Developmental Disabilities) has a better idea of those numbers,” Donovan said.

“I will look into that,” Moseley said.

“It’s a shame. It’s a disgrace,” Donovan said of the situation.

State Says It Is Monitoring Flow of DD Benefits

On Wednesday, Dec.14, a spokeswoman for Jennifer Wood, Deputy Secretary of Health and Human Services, said that “we are individually monitoring the services received by every DD (developmental disabilities) client who has been determined eligible for Medicaid services to ensure that their Medicaid coverage is working correctly."  She did not offer any figures on those who might be affected by the UHIP problems.

“BHDDH social workers are also always available to their clients if they are experiencing any issues with any of the benefits they are receiving,” the spokeswoman said.

Developmental disability officials have publicly acknowledged in recent months that even without a crisis like UHIP, social workers have a hard time keeping up with the needs of clients in their care. The average caseload for each social worker is 205, according to Jane Gallivan, a developmental disabilities consultant to the state.

Rhode Island has been under a federal court order to see to it that individuals with developmental disabilities receive eligibility decisions and begin services in a timely manner after they complete high school.

In response to the order, the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has said that at the end of September, it cleared a backlog of applications that earlier in the year had numbered about 250.

BHSSH also established strict timelines for responding to applicants going forward, determining within 30 days whether they were eligible, needed to submit additional written information, or needed to schedule an interview. 

Whalen’s experience – he waited 10 months to be interviewed by the psychologist – raises new questions about how strictly BHDDH is following its new eligibility timelines, not only for high school students moving to adult services, but for applicants of all ages and circumstances. 

If BHDDH isn’t meeting its timelines because of UHIP, Donovan said, maybe the judge in the consent decree case, John J. McConnell, Jr. of U.S. District Court, can do something to “help move the state to get this DHS system corrected.”

Wood’s spokeswoman declined to address Whalen’s situation publicly, citing confidentiality laws. She insisted that BHDDH is working within court-approved time frames to determine eligibility.

The American Civil Liberties Union has filed its own class action lawsuit against the state in U.S. District Court in the last week over the UHIP troubles with a focus on the food stamp program, saying the denial of benefits puts thousands of households “at imminent risk of going hungry as a result of being denied needed assistance to help them feed their families.”

Bandusky

Ray Bandusky, executive director of the Rhode Island Disability Law Center, told task force members Tuesday that Anne Mulready, one of the center’s managing attorneys, and Linda Katz of the Economic Progress Institute, have met with Governor Gina Raimondo to emphasize the effect the computer problems are having on poor and disabled people.

One of the main points Mulready made, according to Bandusky, was that “the kind of people who need assistance are not going to go online” to fill out a form.

Last week, Raimondo acknowledged that it was a mistake for the human services department to lay off 15 workers and transfer another 30 to the Department of Children, Youth and Families (DCYF) just before it rolled out the new online application process. She has ordered the agency to hire 35 temporary workers to address thousands of applications that are in limbo.

At the task force meeting, Claire Rosenbaum of the Sherlock Center on Disabilities at Rhode Island College said that some of the workers who got “bumped” to DCYF had many years’ experience in resolving the very problems that DHS now faces. That expertise is gone, she said.

Deb Kney, director of Advocates in Action, said that in Whalen’s case, “It took him a couple of months just to be told he had to start over” in the food stamp application process. Advocates in Action employs Whalen to help empower others with developmental disabilities to become advocates for themselves.

A parent on the task force, Mary Beth Cournoyer, said she knows a mother whose son has been found eligible for developmental disability services but who has been “sitting at home for a year” because his family cannot find providers.

After Whelan recounted his problems, Kiernan O’Donnell of the Fogarty Center, a service provider, remarked that “a lot of people focus on transition (to adult services) but people in their twenties, thirties and forties are being marginalized.”

At the same time, he said, providers are still hearing stories of social workers telling clients of  retirement age- in one case an 85 year-old man – that they must seek employment to continue to receive developmental disability services.

O'Donnell said the state's resources would be better spent helping the many individuals who want to find jobs.  

The state’s consent decree coordinator, Mary Madden, has said publicly that no one will force individuals to work. 

Concerns Expressed About Supported Employment Incentives

To satisfy the federal court, BHDDH is planning to roll out a supported employment incentive program in the new year, with a provider fair January 6 that is intended to help individuals seeking employment connect with support services.

The incentive program is funded by $6.8 million for the current fiscal year, but none of it has been spent. 

McConnell, the consent decree judge, had ordered the state to implement a supported employment incentive program by Aug. 1.

Twenty three agencies have applied to provide supported employment services eligible for the incentives, according to Donna Martin, executive director of the Community Provider Network of Rhode Island.

Martin, O’Donnell, and Kim Einloth of Perspectives, another provider, all expressed major concerns about a Catch-22 in the incentive program.  

Einloth said private service providers don’t have the resources to hire new staff and train them to provide supported employment services, but the state’s incentives are bonuses that would not kick in until certain incremental goals were met.

Kim Einloth

For example, Einloth said, the one-time bonus for training a supported employment specialist, $810, does not cover the cost of the training. 

The program is “not sustainable,” she said.

Einloth questioned whether the providers who attend the fair in January will be ready to present themselves to new clients. 

O’Donnell said, “I wonder if they are satisfied with commitment to people they already have,”

Martin replied, “You are spot-on with that, Kie.”

O’Donnell and Einloth, members of the task force, also are co-presidents of the Rhode Island Chapter of the Association of People Supporting Employment First (RIAPSE), which promotes “real jobs at real wages” for individuals with disabilities.

Claire Rosenbaum

Rosenbaum, of the Sherlock Center, offered the perspective of so-called self-directed families, who organize individualized support services for only one person.

While an agency might get $810 after it trains a job developer on the assumption the developer works with ten clients, the family would only get $81, she said.

Because agencies routinely turn away new clients, self-direction has become the only option for many families who otherwise might not choose that route.

Rosenbaum said the advisory sent by BHDDH to providers about applying for the incentive program did not reach all self-directed families, and those who did receive it found it so technical that they couldn’t understand it and set it aside.

Einloth said the self-directed families are not alone. Even for professionals in the field, “it’s been a rocky road trying to understand the plan, because it’s changed so many times.”

The state had a proposed contract for provider agencies, but the contract was “pulled” last week, Einloth said. Nevertheless, a training session for providers on how to submit bills for the reimbursement program will move forward next week, she said.

BHDDH has indicated some money could be available to defray start-up costs, but has never defined that amount, Einloth said.

Martin said she was disheartened that the $6.8 million allocated by the General Assembly for supported employment  remains out of the reach of providers who could deliver results.

Moseley asked Martin to follow up in a separate conversation.

Over the phone, he said he saw “a lot of work” ahead.

Wood’s spokeswoman said Wednesday that it is important to note that the monitor and U.S. Department of Justice approved the supported employment incentive program. .

“We are committed to maintaining an open dialogue and partnership with the provider community moving forward,” said the spokeswoman, Sophie O’Connell.

“As always, we encourage providers and others to share concerns and feedback directly with us so we can work together to address them,” O’Connell said.

(This article has been updated to reflect the fact that the supported employment incentive program passed the review of the court monitor and the DOJ.)

Lack of Resources Underlies Problems with Supports Intensity Scale, Other RI DD Issues

photo by anne peters  

Eileen Vieira and Greg Mroczek both express concerns about the assessment used to determine funding for their adult children with developmental disabilities. 

By Gina Macris

The issue of resources – a scarcity of services and the money to finance them – ran like a thread through a public forum on Rhode Island’s developmental disability system Nov. 9 that brought together families, provider agencies and state officials. 

At the same time, participants applauded the willingness of new roster of state developmental disability officials to listen to their concerns.

Much of the discussion, during the meeting at the Cherry Hill Manor Nursing and Rehab Center in Johnston, concerned an assessment called the Supports Intensity Scale (SIS) that is used to assign individual funding packages to those persons receiving services.

“If there was adequate funding to pay for the needs” identified by the assessment, ”we would have much fewer problems with the SIS,” said Tom Kane, CEO of AccessPoint RI, a service agency.

“There’s not enough money there,” he said.

 Kane and others expressed skepticism about the accuracy of the assessment.

For example, Greg Mroczek said his son and daughter are very similar in their disabilities and needs, and yet they were assigned different funding levels.

“It flies in the face of the accuracy of the tool,” he said.

Eileen Vieira, who has a son with developmental disabilities, said some people who do the assessments “have no clue.”

They are not familiar with the person’s medical conditions or mental health issues or what is happening in the client’s life, she said. She said she did not believe the SIS captured her son’s need for behavioral support.

Heather Mincey, administrator in the Division of Developmental Disabilities, acknowledged that “a lot of times the SIS administrators did not get all of the information” necessary to make an accurate assessment of a person’s needs.

Heather Mincey

On Nov. 6, the Division switched over to a new form of the SIS which Mincey said she believes “will help a lot.” Called the SIS-A, the assessment is designed to capture behavioral and medical needs that were sometimes not apparent in results of the original SIS, according to Mincey. 

Kane said he has “never been a cheerleader for the SIS.”

The developer of the SIS, the American Association on Intellectual and Developmental Disabilities (AAIDD), maintains it differs from other assessments because it focuses not on shortcomings but on the supports an individual needs to be successful at a particular task.

Kane, however, said most family members and professionals in the field of developmental disabilities find it difficult to talk about the issues raised in the questions because “you have to examine what’s wrong” to arrive at the necessary supports.

“It’s a deficit-based tool,” he said.

A representative of AAIDD will visit Rhode Island to explain the SIS-A at an information and training session Nov. 17. (See related article.)

Mincey, meanwhile, encouraged parents to file appeals if they believe the SIS results for their sons or daughters are inaccurate – or if they have problems with a shortage of funds for transportation or other issues.

But Vieira indicated that the appeals are continuous and time-consuming, especially for parents who have full time jobs. “You have to appeal and you have to appeal,” she said. 

Brian Gosselin, Chief Strategy Officer for the Executive Office of Human Services, said developmental disabilities officials will use feedback from appeals of decisions on the SIS, along with experiences trying to solve other problems, to improve the system.

In whittling down a backlog of 224 applications for adult developmental disability services, for example, workers learned that nearly half the submissions did not contain all the required documentation, Gosselin said.  That experience will result in a redesign of the application process, he said.

Carla Russo

An independent court monitor in a federal consent decree mandating expansion of community-based services for adults with developmental disabilities has pressed the state to work through the backlog and identify all individuals aged 14 to 21 who might qualify for services after high school. 

One mother, Carla Russo, said her son left school in the 20013-2014 school year and still does not have adult services. 

Iraida Williams, an employee of the Sherlock Center on Disabilities at Rhode Island College, asked whether the application materials would be available in Spanish. Williams has appeared at several public forums on developmental disability services since April 2015, to ask the state to hire a Spanish-speaking social worker or interpreter who could field questions from non English-speaking families.

“That’s the type of feedback that we need,” Gosselin said.

tracey cunningham

Tracey Cunningham, Chief Employment Specialist at the Division of Disabilities, said 23 service providers have applied for a supported employment incentive program that is gearing up as a result of the consent decree.

Nearly every one of the 23 providers has talked about taking on new clients in the process, Cunningham said, although she didn't expect the program to begin operations until January.

If that many agencies do expand, it would be a significant shift from a system that has been in a holding pattern because of a shortage of funding. 

Cunningham said the Division of Disabilities also wants to hear from families who organize their own supports and might want to purchase supported employment services.

One mother, Mary Beth Cournoyer, said parents, who themselves have jobs, need to cover a certain number of hours of care for their sons and daughters and can’t afford to divert much, if any, funding to job development. 

Cunningham said that “we are looking” at the possibility of providing additional funding for supported employment services rather than requiring individuals to stretch their budgets.

Gosselin, meanwhile, said that state officials will be working with consultants from the National Association of State Directors of Developmental Disabilities Services for the next six months to try to come up with better ways to serve individuals and families and at the same time comply with new Medicaid regulations affecting individuals with developmental disabilities.

All photos by Anne Peters

Public Information Session Nov. 17 on New Individual Assessment of DD Support Needs

By Gina Macris

This article has been updated

A representative of the national organization which created the Supports Intensity Scale (SIS), the individual assessment used to assign Medicaid funding to adults with developmental disabilities in Rhode Island, will help explain a new version of the questionnaire at a public information and training session Thursday, Nov. 17.

The American Association on Intellectual and Developmental Disabilities (AAIDD), which created the SIS used in Rhode Island since 2011, released a new version in 2015 that the organization says is better designed to capture the needs of adults with developmental disabilities.

A spokeswoman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) said that the new version, called the SIS-A, is being put into use this month in individual reassessments.  

The SIS, rather than focusing on an individual’s handicaps, was designed to determine how much support a person needs to function successfully in the various activities of daily living. It was not designed as a funding tool, but many states, including Rhode Island, use the SIS to determine individual budgets for support services.

The administration of the SIS in Rhode Island ranks high on the list of parental complaints, judging from comments made at public forums earlier this year.

The Nov. 17 forum will be from 4:30 to 6:30 p.m.  in the Arnold Conference Center of the Regan Building at Eleanor Slater Hospital, 111 Howard Ave., Cranston.

BHDDH officials ask that participants RSVP by emailing BHDDH.AskDD@bhddh.ri.gov

More information about the SIS-A is available on the AAIDD website. For additional questions, email BHDDH.AskDD@bhddh.ri.gov

The SIS also will be on the agenda of a general public forum on adult developmental disability services, tomorrow, Wednesday, Nov. 9, from 4 to 6 p.m. at the Cherry Hill Manor Nursing and Rehab Center, 2 Cherry Hill Rd., Johnston.

Jane Gallivan, a consultant to the Executive Office of Human Services, explained in some detail the rationale for moving to the SIS-A during an interview in late September. To read that entire article, click here.

Toward a Smoother Transition: RI Will Decide Early, By Age 17, Who Will Qualify for Adult DD Services

By Gina Macris

(This article has been updated.) 

For some Rhode Islanders with developmental disabilities, the shift between high school and the adult world has been likened to falling off a cliff.

Now, changes are underway to lay the groundwork for a smoother transition from high school to adult living, the latest being a new policy that the state will accept applications from individuals aged 16 and will determine their eligibility by the time they turn 17.

But it remains to be seen how far the state gets in delivering on its promise to a federal court to find jobs for every eligible young adult who can and wants to work by next June 30.  

One potential problem is that, despite small raises recently granted to direct care workers, their employers still may not be able to hire the staff necessary to add new clients. 

New, slightly higher reimbursement rates to private service providers reflect the raises but do not address continuing shortfalls in overhead costs borne by employers, according to a spokeswoman for some two dozen agencies.

For years, private providers have had trouble recruiting and retaining competent staff. A new employment incentive program, with a few exceptions, requires agencies to use existing funding to train workers, if necessary, and make job placements before collecting one-time bonuses. 

According to evidence presented in U.S. District Court last April, young adults with developmental disabilities have been dismissed abruptly from high school on their 21st birthdays and have tended to sit at home for weeks or months because adult services were not in place.

Rhode Island law says individuals with developmental disabilities are eligible for adult services at age 18, although decisions on eligibility often have been made a few months before the young people turned 21.

With many agencies declining to accept new clients, families found it difficult and time-consuming to arrange services.

When services finally were pulled together, they often fell short of participants’ and families’ expectations, according to what U.S. District Court Judge John J. McConnell heard in April.

Since the April hearing, the General Assembly has enacted a law sponsored by the Senate Finance Committee chairman, Daniel DaPonte, that requires school districts to keep those 21-year-olds in class until the end of the academic year.

More recently, the Executive Office of Human Services (EOHHS) has updated plans to better identify, enroll, and serve young adults eligible for developmental disability services provided by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) and the Office of Rehabilitation Services (ORS). Those plans include the new “eligibility determination by 17” policy.

In a dramatic departure from past practice, parents of youngsters who are likely to be eligible will be encouraged to apply for adult services when their sons and daughters turn 16.

Consent Decree Drives Change

The changes respond to requirements of a 2014 federal consent decree which aims to move adults with developmental disabilities out of sheltered workshops and segregated day programs that violate the Olmstead decision of the U.S. Supreme Court.

In 1999, the high court found that services for individuals with disabilities must be provided in the least restrictive environment that is therapeutically appropriate, with that environment presumed to be the community.

During the latest judicial review of the consent decree in September, an independent court monitor, Charles Moseley, noted that since the consent decree went into effect in April, 2014, the state has failed to meet targets for placing young adults in regular jobs in the community, with the necessary supports. 

By July 1, 2016, the state was required to have placed all young adults who have left high school during the 2013-2014 academic year or later. At the time, 151 people were reported to be eligible, but the state’s total number of placements was 29.

Rather than hold a contempt hearing against the state, Judge McConnell has deferred to Moseley, who said was confident he could work with state officials to meet the employment goals.

Complicating the issue, the number of young adults in question has risen since July from 151 to 259. The Rhode Island Department of Education (RIDE) has updated its count of individuals with developmental disabilities who left school during the 2015-2016 school year and will continue to do so through June 30, 2017.

RIDE also has promised to expand the categories of individuals whose names it reports to BHDDH to more accurately reflect the total population of young people likely protected by the consent decree, according to Moseley’s most recent report to Judge McConnell Nov. 1.

Since the consent decree went into effect in 2014, RIDE has reported to BHDDH only the names of those with developmental disabilities who turn 21 and leave school.

Going forward, its count will include all those between the ages of 14 and 21 who have developmental disabilities, autism, or multiple disabilities that can be expected to restrict their ability to function independently as adults. The monitor wants RIDE to identify all those students by Nov. 15.

In the meantime, BHDDH, ORS, and RIDE will work together to notify all affected families of their protected status under terms of the consent decree and give them information about applying for services. (Click here for eligibility criteria in state law.) 

General Assembly Increased DD Budget

To shore up the state’s ability to provide services once adults are found eligible, the General Assembly has approved an hourly wage increase of 36 cents for direct care workers – a total of $5 million – and allocated another $6.8 million to foster supported employment.

In addition RI Senate leaders have said they want to raise the current average wage of front line workers from $11.18 to $15 an hour over five years.

But the state still faces continuing consent decree deadlines for placing adults with developmental disabilities in jobs, including about 50 former sheltered workshop employees by Jan. 1, as well as a yet-to-be–determined number of eligible young adults by June 30.  

The new $6.8 million supported employment program expects to begin disbursing funds in mid-November, according to an EOHHS document attached to Moseley’s latest filing with the court.

The program requires providers to have specially-trained employment teams in place to quality for the program and begin receiving a series of one-time bonuses. The bonuses reward the certification of employment specialists, job placements, and job retention for six months with totals that vary from about $3,500 to $15,750 per person, depending on the client’s age and the complexity of the disability.

The recent wage increases

The recent wage increases cover payroll–related taxes but do not add to the state’s reimbursement to private agencies for other aspects of employee overhead costs-taxes. Nor do the raises increase the pay of front-line supervisors or mid-level managers, according to Donna Martin., executive director of the Community Provider Network of Rhode Island, an association of 26 agencies.

Martin says the state allows agencies  35 percent of direct care workers’ salaries for such overhead costs, but CPNRI data “shows actual employee-related expense is in excess of 60 percent.”

Last spring, she told the General Assembly that her membership operates at an average loss of $5,500 a year for each employee.

do not change state’s reimbursement to private agencies for employer-related taxes and other costs, according to Donna Martin, executive director of the Community Provider Network of Rhode Island, an association of 26 agencies.

Last spring, she told the General Assembly that her membership operates at an average loss of $5,500 for each employee.

Because many agencies are not expanding their staff or accepting new clients, the parents of newly-eligible young adults increasingly are turning to so-called “self-directed” services, which allow them to design customized programs for their sons and daughters, a time-consuming process. The parents are responsible for organizing a program within their budget and choosing and supervising workers. A fiscal intermediary pays the bills.

BHDDH is encouraging these “self-directed” providers, as well as the established agencies, to apply for the one-time supported employment bonuses.  

The next opportunity for consumers and families to speak to state officials about the consent decree and developmental disability services in general is Wednesday, Nov.9 from 4 to 6 p.m at the Cherry Hill Manor Nursing and Rehab Center, 2 Cherry Hill Rd., Johnston.  

Judge McConnell has scheduled his next review of the consent decree for January 27 in U.S. District Court, Providence.

(The original version of this article inaccurately stated that recent raises to direct care workers did not include an increase for any aspect of employer-related costs.)  

RI Senate Leaders Launch Drive to Raise DD Workers' Pay to $15 in Next Five Years

By Gina Macris

DiPalma outlines Plan for $15 hourly wage in five years

Rhode Island Senate leaders have announced a five-year drive to lift wages of caregivers for adults with developmental disabilities to $15 an hour, with the chairman of the Senate Finance Committee saying Oct. 28 that the existing labor force is “so tenuous it is on the verge of collapse.” 

At a press conference in Warwick, Sen. Louis DiPalma, D-Middletown, the architect of the plan, said it would start with an additional $6.8 million in Medicaid funding – half of it state revenue- in the fiscal year beginning July 1, 2017. 

The plan also calls for legislation that would commit the state to additional wage increases in each of the following four fiscal years, although the total cost has yet to be determined, DiPalma said. 

The General Assembly added $5 million in Medicaid funding to the current budget late in the 2016 legislative session, under pressure from Governor Gina Raimondo and from a federal court order reinforcing a consent decree mandating integration of individuals with developmental disabilities. 

The U.S. Department of Justice and an independent court monitor had expressed concern that low salaries prevented service agencies from attracting workers with the necessary skills to implement the consent decree. 

The $5 million added to the current budget – including $2.5 million in state funds - raises the average worker’s hourly wage by 36 cents, from $10.82 to $11.18, according to DiPalma. The $6.8 million in the next budget would add another 76 cents, for a new average hourly rate of $11.94, he said. 

Similar yearly hikes would be needed during the following four years to reach $15 an hour, DiPalma said, although the increments do not have to be evenly divided as long as the state reaches the goal by July 1, 2021, the start of the 2022 fiscal year. 

He plans to introduce legislation in the next session of the General Assembly calling for raises over multiple years. 

The effort has the support of the Senate President, Teresa Paiva Weed, and the Senate Finance Committee Chairman, Daniel DaPonte. DiPalma is first vice-chairman of the Senate Finance Committee.

 Late Friday, David Ortiz, press secretary to Governor Raimondo, said that while the current budget gave workers their first raise in several years, “we must do more to stay competitive with neighboring states. “ 

“The Governor looks forward to partnering with Senator DiPalma and Senate President Paiva Weed to continue to invest in better outcomes for families and help ensure all of our workers can make it in Rhode Island,” Ortiz said. 

Massachusetts has agreed to pay personal care attendants a minimum of $15 an hour by 2018.  Enacted in 2015, it was the first such state-wide agreement in the nation. 

New York recently adopted legislation spelling out a multi-year plan to phase in a $15 minimum wage for all workers, with different schedules for various regions of the state. 

In a statement in Warwick Friday, DaPonte said that DiPalma’s plan “addresses an important part of the wage inequity problem, and helps improve outcomes for the individuals they serve. 

“At the same time, we need to continue to review the methodology for compensating all those direct care workers who serve our children, homebound elderly, and individuals with disabilities through other types of provider agencies,” he said. 

During the press conference at West Bay Residential Services on Knight Street, DaPonte talked about a constituent who approached him at his son’s soccer game and complained that his recently-widowed, elderly mother was not receiving the 20 hours of home care to which she was entitled. 

The constituent wanted DaPonte to introduce legislation to require home health aides to show up on the job. 

But DaPonte said he told the man that the workers were so poorly paid the agencies “can’t find people to show up.” 

“Now we’re at the point where the system is so tenuous it’s on the verge of collapse,” he told an audience of about 50 that filled a conference room at the headquarters of the agency, which specializes in support for individuals with significant physical limitations.  

Data shows Pay Inequities, Particularly for Women

DiPalma’s plan emerged from a four-month long study that showed stark inequities in the pay of direct care workers since the General Assembly cut a total of $26 million from the developmental disability budget in the fiscal year that began July 1, 2011. 

With that sweeping action, workers saw double-digit pay cuts, to an average of $10.65 an hour, according to DiPalma’s data. At the time, the minimum wage was $3.25 lower, or $7.40 an hour. 

Since then, however, the state’s minimum wage has increased 30 percent, to $9.60 an hour, while the average pay of direct care workers has remained stagnant. 

In the fiscal year which ended June 30, Rhode Island’s direct care workers made an hourly average of $10.82 an hour, while those doing comparable work in Massachusetts were paid $13.02,  and those in Connecticut made $12.19, according to statistics from the U.S. Department of Labor. 

The figures pertain to employees of private agencies providing direct care. In Rhode Island, a parallel, state-run system pays its entry-level workers $17.15 an hour, for an annual salary of $35,668. These workers also get thestate employee benefits package, according to DiPalma’s statistics.  

With longevity, the average direct care worker in the state system makes $42,278 a year, he said. 

DiPalma also presented the results of a 2015 survey of direct care workers conducted in 2015 by the Community Provider Network of Rhode Island, an association made up of most of some three dozen private agencies in Rhode Island that serve about 4000 adults with developmental disabilities. 

With 1,439 responses, the survey found that:

•  More than half the workers were female heads of households
• · Many received food stamps and other government assistance geared toward low-income workers
• ·87 percent worked fulltime
• ·41 percent worked more than one job to make ends meet
• · 62 percent said they want to leave the developmental disabilities field because of the low pay 

The turnover among employees of private agencies is 33 percent a year, three times the turnover rate of 11 percent in the parallel state-run system, according to DiPalma’s study. 

Higher wages would mean greater stability and improved performance in the workforce, DiPalma said. 

Picking up where DiPalma left off, the director of the Sherlock Center on Disabilities at Rhode Island College said research shows those two factors correlate with a better quality of life for the recipients of support services. 

Anthony Antosh said a better quality of life is measured by improved health and safety, more interpersonal relationships and greater self-determination among individuals with developmental disabilities. 

Jim Petrone works his communication board

Jim Petrone, who receives support from West Bay Residential Services, used a communication board to tell the audience that he could not have made it through a health crisis in 2015 without the support of his staff and family. 

“Now I have a second chance at life,” he said. 

Diane Scott, who has worked at West Bay Residential Services for 26 years, reminded the audience that those who provide direct care come to learn the most intimate details about a person’s life. 

“Imagine,” she said, “if staff showered you or bathed you.” 

“No sooner do you decide to trust these staff than they continue to leave. Regulars work extra hours to compensate for yet another staff vacancy,” Scott said. 

Antosh said direct care workers should be treated not as short-term custodial staff but as professionals, who are on a career ladder, and who provide comprehensive support to people with very complex needs.  

THREE-STATE COMPARISON OF MINIMUM WAGE AND HOURLY RATE FOR ATTENDANTS

CHART COURTESY OF RI SENATE 

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. 

Gallivan's Short Stint in RI Brings Plenty of Change, Starting with Plans for Better DD Assessment

Jane Gallivan   Photo by Anne Peters

By Gina Macris

In just the few months she has served as interim director of Rhode Island’s Division of Developmental Disabilities, Jane Gallivan has been instrumental in changing the state’s approach to providing services for individuals with intellectual challenges.

On the most concrete level, she has set plans in motion to adopt an improved version of a controversial assessment – the Supports Intensity Scale (SIS) – to more accurately determine the needs of clients.

With help from the Executive Office of Health and Human Services, Gallivan also has shifted strategies for presenting the division’s budget so that the state Budget Office and the General Assembly better understand what it means to support individuals with developmental disabilities.

The initiatives Gallivan has begun, and the tone she has set, are expected to continue after her role changes Friday, Sept. 30, to that of long-distance consultant.

Gallivan, 68, is taking her 101 year-old mother to Florida for the winter, a commitment she made before Rhode Island officials approached her for short-term help in leading the developmental disabilities division.

She will continue to monitor and guide reforms and will serve on the committee that will screen applicants for the division’s permanent chief.

A former state-level director in Maine and Delaware, Gallivan already has been spreading the word about the director’s job through her nationwide contacts in the field of developmental disabilities.

As she prepared to end her full-time role in Rhode Island, Gallivan shared her perspective on the future of developmental disability services in Rhode Island.

Major Changes Coming to Every State

Gallivan says all state developmental disability service systems are in the midst of a sea change because of sweeping new Medicaid regulations.

The rules say that all services for the elderly and individuals with all types of disabilities must be provided in the least restrictive setting that is therapeutically appropriate, which is presumed to be the community.

After March, 2019, Gallivan said, Medicaid will no longer pay for sheltered workshops or segregated day programs after March, 2019.  Sheltered workshops don’t fit the Medicaid’s definition of “community,” she said.

Federal Medicaid dollars pay for half the cost Rhode Island’s developmental disability services.

The federal consent decree requiring Rhode Island to shift to community-based jobs and activities may put the state ahead of the curve, she said.

Both the consent decree in Rhode Island and the changed Medicaid regulations nationwide get their authority from the 1999 Olmstead decision of the U.S. Supreme Court, which is in effect a desegregation order for individuals protected by the Americans with Disabilities Act. 

Individuals and families who struggle to find appropriate services may not yet see any change in their lives.

Gallivan says she worries about a caseload ratio that is “way too high” - one social worker to every 205 clients.

Social workers are “really concerned about helping people out,” she said, “but like any other service system, they are often, because of the ratios, dealing more with people in crisis”  or those just entering the system, rather than “supporting the people who are not the squeaky wheel.”

“No one wants to expand state government,” but state government must still “figure out how we’re going to put more resources into case management,” Gallivan said.

A New Way to Assess Service Needs

Since taking the interim director’s job in July, Gallivan has been “looking under the hood,” as she put it, to understand the barriers that need to be removed to allow “people to really get out and enjoy activities in the community, to get better connected, to explore new job options and so forth.”

She’s been searching for hindrances in state regulations, the way programs are funded, and the way clients have been assigned individual funding based on “tiers,” or levels of need.

The Supports Intensity Scale, (SIS) is a lengthy questionnaire used since 2011 to determine the individual level of funding according to “tiers” labeled A through E, with E being the costliest.

In the last few years, the SIS been the single most emotional flashpoint for families, many of whom have complained bitterly not only about results that yield insufficient funding, but that interviewers argued with them or recorded answers different than the ones they gave.

In the next several months, Gallivan said, the state will move to what she hopes will be a more accurate version of the assessment, with additional questions focusing on medical and behavioral needs.

SIS Interviewers will be retrained in the new version by representatives of the organization which developed the SIS, the American Association on Intellectual and Developmental Disabilities (AAIDD).

Gallivan said training also will be offered to family members and representatives of service provider agencies, who attend the interviews and help answer questions.

The state will monitor the new approach to determine whether it leads to a reduction of a high number of exceptions now granted to the assessment results. 

The exceptions, in which a client may have more funding than warranted by the official level of support, have raised numerous questions in the General Assembly about how the Department of Behavioral Healthcare, Developmental Disabilities, and Hospitals (BHDDH) manages its budget. 

Gallivan offered some background on the SIS, which is used in Rhode Island as a basic building block of the developmental disability budget.

On its face, the SIS is a better assessment than some others in use across the country because it frames questions in terms of an individual’s strengths and the supports he or she may need to achieve a particular goal, rather than focusing on deficits, Gallivan said.

But it has its limitations, she readily acknowledged. It is recognized nationwide that the SIS does not address extensive medical needs or behavioral issues, Gallivan said.

“You also have to be sensitive to people who are very independent, but they may get themselves into trouble with the law,” or in some other way, because of their disabilities, she said.  For example, some individuals may appear independent, but if they don’t have the proper support and guidance, they may end up at a homeless shelter, or picked up by police for shoplifting.

The SIS was developed as a tool for planning individualized programs of support, not as a funding mechanism, although many states use it for budgeting, Gallivan said..

As a result of the gaps inherent in the original assessment, the state of Oregon developed a number of questions on behavioral and medical support needs that were tried out by other states and ultimately incorporated into a new version of the questionnaire called the SIS-A, Gallivan said.

“Everyone came to the conclusion that these supplemental questions really did add a more robust, accurate assessment,” she said.

AAIDD released the SIS-A in 2015, according to the organization’s website.

Gallivan said arrangements are being made for AAIDD representatives to come to Rhode Island for training in the SIS-A. At the same time, the consultants who developed the formula for turning SIS scores into individual funding levels have been asked to revise that algorithm to correspond to the SIS-A, she said.

Disability Services: a Lifetime Commitment

Meanwhile, Gallivan has tried to set a different tone for presenting the needs of individuals with developmental disabilities to the state Budget Office. 

“I’m not saying that people don’t know” what the Division of Developmental Disabilities does, “but a lot of people really don’t know,” she said with a chuckle.

“So I think it’s really important to paint a picture” of the service system and the people in the middle of it, Gallivan said.

Budget officials should know who the division serves, whether they live with their families or elsewhere, the kinds of services they receive, why the services are important to them and their families, the actual costs of providing those services, and the expected outcomes, Gallivan said.

That’s a different approach than seeing the system as a list of line items, she said.

It’s important for the fiscal arm of state government to understand that “we are the long-term care system,” Gallivan said.

“People think of the elderly as being the long-term care system, but they’re only in there for a few years,” she said.

“We’re talking birth to 100” in developmental disabilities, she said.

Legislators must understand that they can’t take money from individuals with developmental disabilities and give it to someone else, Gallivan said.

“In this system, everyone who comes through the door will have a life-long need for some kind of support because of the nature of their disability,” she said.

It’s not analogous to the mental health system, where funds may be shifted because one person is in recovery and another is not, Gallivan said.

A Focus on Families

In any presentation she makes, Gallivan said, she tries to emphasize the need to support families who have a member with developmental disabilities living at home with them.

Many families want their loved one at home, she said. "Ffrom a bureaucratic perspective, it’s (generally) the safest place they’ll be,” she said, “and the cost of services in the family home will be less than they will be anywhere else.”

“So how can we invest in families and recognize them as caregivers? We talk about people as caregivers of those with Alzheimer's, but we have people who are caregivers of people with developmental disabilities who face a lot of challenges” and have their own need for support, Gallivan said.

She suggested families should have access to more respite care and should be able to get financial support for modifications like wheelchair ramps.

Gallivan also indicated technology might help families keep tabs on their loved ones, although options like bedroom cameras might not be universally welcome in some homes.

The full range of supports for families “need to become a very strong focus,” Gallivan said, “and the type of planning we need to do with families is very different.”

“You need to talk about the whole family and what the family needs are,” she said.  

Families and individuals who advocate for themselves must be part of the conversation, Gallivan said.

Judge, DOJ Praise RI's Compliance Efforts In DD Case; Contempt Hearing Avoided, For Now

By Gina Macris

The state of Rhode Island has done more in the last six months to comply with a federal consent decree aimed at ending the isolation of adults with developmental disabilities than the previous state administration did in the first two years of the agreement. 

That assessment came from the U.S. Department of Justice Sept. 16 in a conference on the status of the 2014 agreement before U.S. District Court Judge John J. McConnell, Jr.   

Because of those efforts, McConnell deferred, for now, a request by DOJ lawyer Nicole Kovite Zeitler that he hold contempt proceedings in early October over the state’s failure to hit specific targets in the order McConnell issued last spring to force compliance with the consent decree.

By signing the consent decree in 2014, the state promised, over a ten-year period, to establish a system of community-based, integrated work and leisure activities for individuals with developmental disabilities that would replace sheltered workshops and segregated day programs. The transition is mandated by the Olmstead decision of the U.S. Supreme Court.  

While acknowledging the state’s intensive efforts, led by Jennifer Wood, Deputy Secretary of Health and Human Services, Zeitler cited two non-compliance issues: the scarcity of young adults with developmental disabilities holding jobs, and the state’s failure to distribute increased reimbursement rates to private service providers by Aug. 1 as the judge had required.  

Wood said rate increases would be implemented Oct. 1. That is the date the computer system will be adjusted to reflect a 36-cent hourly increase, from $11.55 to $11.91, in the average reimbursement rate paid to private service providers.  

Approximately 4000 workers at private agencies will get raises, retroactive to July 1, after their employers start receiving the higher reimbursements. 

Mary Madden, the state’s consent decree coordinator, elaborated on the lack of job placements for young adults. 

Of a total of 151 individuals with intellectual disabilities who left school in the 2013-2014 or 2014-2015 academic years, 99 are receiving adult services, including 79 who are receiving employment-related services and 29 who are actually employed, Madden said. 

She did not have data for the 2015-2016 academic year. 

The employment number is “not where anyone wants it to be,” Madden said.   

Of the 151 identified, 52 individuals are not enrolled for any services. 

Later, Zeitler said the notion that 52 young adults have not been connected with adult services is a serious concern. 

Charles Moseley, the independent monitor in the case, said he wanted to echo both Zeitler’s concerns and her praise of the state’s efforts so far. 

He said he “wrestled with the idea of a show-cause hearing,” a proceeding that might lead to a contempt order, but decided against recommending it, because he believes the state can work with him to plan and provide employment services. 

While McConnell noted that a missed deadline in a judicial order is a serious issue, he deferred to Moseley’s confidence that he can work things out with the state. 

“I tend to be a ‘half-full’ kinda guy,” McConnell said, explaining his decision. 

“Some may call me Pollyanna-ish,” he said, but the compliance effort put forth by the state in the last six months “deserves a compliment and a thanks.”  

McConnell said state government doesn’t move quickly, even with court sanctions hanging over its head, as they were after McConnell issued a 22-point compliance order May 18. 

The fact that the Governor and the General Assembly acted late in the legislative season to add $11 million to the developmental disabilities budget should be acknowledged, McConnell said. He also thanked Health and Human Services Secretary Elizabeth Roberts, Deputy Secretary Wood, and her administrative team. About half a dozen of them attended the hearing.  

“We wouldn’t be here if it weren’t for the Department of Justice,” McConnell continued, praising its “tenacity and advocacy in taking on an incredibly complex task for those who wouldn’t otherwise have a voice.” 

But McConnell said he wasn’t about to unfurl a “Mission Accomplished banner” just yet.  

A report that the monitor filed with the court on the eve of the hearing outlines a plan to put the state on short-term deadlines for developing employment strategies for young adults and making sure all those eligible for services are identified. The employment-related strategies are due Oct. 1. 

 Moseley gave the state until Nov. 15 to identify all young adults who have left school in the last three academic years who are eligible for developmental disability services, but he wants to hear how it will approach that problem by Sept. 30. 

The effort will require cooperation by the state Department of Education, the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, and the state Office of Rehabilitation Services. 

Moseley has expressed concern that the state is missing those who do not have an intellectual disability but are eligible because of a developmental delay.   Depending on the individual, a young adult on the autism spectrum may fall into the latter category. 

With the average cost of services at about $59,000 a year per person, Moseley’s directive for better identification of eligible young adults has the potential to add significantly to the developmental disabilities budget. 

For example, it would cost an estimated $3 million a year to serve the 52 young adults who have been identified but who are not enrolled in developmental disability services. 

Moseley, meanwhile, reflected on concerns expressed by the DOJ about the need for quality career development planning, a newly-implemented exercise that is intended to drive thoughtful, individualized job searches. 

“Person-centered planning, person-centered thinking, is a challenge that is facing all states. It needs to be done on an ongoing basis,” he said. 

Earlier in the hearing, Deputy Secretary Wood said the new chief employment specialist, Tracey Cunningham, had personally trained more than 200 people in how to write career development plans. 

But Moseley said it’s not a matter of one training. “You have to learn it and live it,” he said. 

RI Officials Correct Figure in Monitor's Report; Say Rate Hike Will Go To DD Service Agencies

By Gina Macris

All the workers who provide direct support services to adults with developmental disabilities in Rhode Island won’t be getting raises to at least $11.55 an hour, as indicated in the most recent report of a federal court monitor in the so-called “sheltered workshop” consent decree case.

The report from the monitor, Charles Moseley, says that the state Department of Behavioral Health, Developmental Disabilities and Hospitals (BHDDH) “will adjust all rates for Direct Support Professionals to a base rate of $11.55 an hour.”

 In reality, BHDDH will raise the “base rate” the state pays to the private agencies from $11.55 to $11.91 an hour, an increase of 36 cents; the private agencies, in turn, must use that new hourly figure to cover both salary increases and fringe benefits for their employees.

That was the word Sept. 13 from Mary Madden, the state’s consent decree coordinator, and Jennifer Wood, Deputy Secretary of Health and Human Services.

Wood also said it is impossible to determine how much of an hourly wage increase each worker will actually receive.  

 Approximately 4,000 workers staff the private agencies serving Rhode Islanders with developmental disabilities under contracts with the state. These direct support workers now make an average of about $10.75 an hour, although starting pay is typically minimum wage, or $9.60 an hour.

Different agencies have different pay scales and different arrays of benefits, Wood said. The General Assembly set aside about $5 million in the current budget for raises to direct support workers and for increased employer costs, but did not specify how much was to go into each category, she said.

One part of an order issued in May by U.S. District Court Judge John J. McConnell, Jr., required the state to “appropriately increase salaries, benefits, training, and supervision for Direct Support Professionals and Job Coaches” by Aug. 1.

The increases, retroactive to July 1, have not yet gone into effect, but Moseley, the monitor, said the judge’s order had been “provisionally met” because the state had submitted a plan that describes how the increases would be handled.

Before Moseley will sign off completely, he said, he needs more documentation in the plan, as well as confirmation that BHDDH has disbursed the money for the rate increases to developmental disability service agencies.

The issue of pay for workers was one of numerous points covered in Moseley’s report, submitted to McConnell Sept. 9 in anticipation of the judge’s review of the case Sept. 16. The session begins at 2 p.m.

Task Force Commentary on Monitor’s Report

Meanwhile, the monitor’s report also prompted criticism at a meeting of the Employment First Task Force Sept . 13.

Claire Rosenbaum questioned Moseley’s conclusion that the state had met the Judge’s Aug. 1 deadline for making it easier for providers to offer employment-related services to adults with developmental disabilities.

“I haven’t seen anything that offers supported employment services for my daughter, and we’re a month and a half past the implementation date,” Rosenbaum said. She serves on the task force as Adult Supports Coordinator for the Sherlock Center on Disabilities at Rhode Island College.

Nor did her daughter’s counselor at the state Office of Rehabilitation Services (ORS) know anything about career development planning, Rosenbaum said, even though the monitor said ORS, as well as BHDDH, and the Rhode Island Department of Education (RIDE) had all implemented training in the process of career development planning by the end of July as required by the judge’s order.

The judge’s order included several mandates related to supported employment, all with an Aug. 1 deadline.

 The requirements included a change in the model for reimbursing provider agencies, and a change in the financial authorizations made to individuals to pay for what Moseley called the “Person Centered Supported Employment Services Program.” 

The current authorization method requires individuals seeking job-related services to trade in time allocated to another category of support.

Madden acknowledged that the model for changing reimbursement to service providers had not yet been put into practice.

“What irks me,” Rosenbaum said, “is this status report says ‘provision met’, when it clearly has not been met.”

The state has said the reimbursement model would change for clients of agencies chosen to participate in a pilot program of performance-based contracts intended to provide the supports necessary to enable individuals with developmental disabilities to find and keep regular jobs.

BHDDH is not yet accepting applicatios for that pilot program, although Moseley said he is satisfied with the state's plan for the program . The state's lawyer will file the detailed plan with the court some time this week, according to Wood. 

In any event, the judge is requiring performance-based contracts for all service providers in the state by Dec. 31. 

Kevin Nerney, the task force chairman, took issue with the term “Person Centered Supported Employment Services Program” to describe what supported employment services are supposed to provide.

Such individualized, employment-related services have not been rolled out to direct support staff at provider agencies, he said. Until employment-related services have been put in place, he said, they should not be elevated with an important-sounding title.

The task force was created by the 2014 federal consent decree, in which the state agreed to correct violations of the Americans with Disabilities Act by moving from segregated sheltered workshops and day programs to supports for community-based employment and activities for adults with developmental disabilities.

The consent decree envisioned the task force as a bridge between state government and the community, although the group is still exploring how its role will play out.  Its next meeting is scheduled for Oct. 11.

Federal Court Hearing Sept. 16 Could Test RI's Compliance With DD Consent Decree

By Gina Macris

The status of Rhode Island’s compliance with a federal consent decree mandating integration of adults with intellectual and developmental disabilities is scheduled to go before U.S. District Court Judge John J. McConnell, Jr., on Sept. 16.

In response to McConnell’s active involvement in the case, which began in January, high-ranking state officials have begun an intense effort to lay the groundwork for compliance with the consent decree, which was signed in April, 2014.

On May 18 of this year, McConnell issued an order that held the state to numerous deadlines in July and August.

Whether the state has made sufficient progress over the summer may become clear during the upcoming review of the case in open court.

Prior to the Sept. 16 court session, the U.S. Department of Justice  and the independent court monitor can be expected to file written reports with the judge on their view of compliance issues, which they’ve done in the past.

They also may ask the judge to impose sanctions on the state if they believe it has not met the requirements of McConnell’s very prescriptive order of May 18.

The DOJ and Charles Moseley, the monitor, have been checking compliance with the consent decree on the basis of files they have selected from a list the state has provided of all individuals who fall under the purview of the agreement, about 3,000 people in all. The individuals are identified by a code that protects their privacy.

The case is extremely complex, with many related steps needed to achieve the long-term goal of the consent decree – to allow persons with disabilities the choice to participate as much as possible in regular employment and community activities. The agreement remains in effect until Jan. 1, 2024.

A July 1 Deadline for Supported Employment

One of those steps, spelled out in the consent decree itself, is a requirement that the state would find supported employment by July 1, 2016,  for all eligible individuals who left high school during the 2015-2016 school year. 

That population is estimated at a minimum of 74 individuals by the Rhode Island Department of Education (RIDE). 

In an interview Aug. 18, a state official could not say whether the employment requirement has been met because it does not have employment data as recent as July 1.

For now, the state is getting employment statistics from an “Employment and Day Activity Outcomes Survey” for adults with developmental disabilities that is done on a quarterly basis by the Sherlock Center on Disabilities at Rhode Island College.

The latest survey is a snapshot of what adults with disabilities were doing during their daytime hours in March, according to Jennifer Wood, Deputy Secretary of Health and Human Services.

Wood said statistics for July won’t be available until September.

Supports necessary for individuals to access regular employment vary with the needs of the person. They may include transportation, extra training that breaks down the job into small steps, or even a job coach who stays with the employee for the entire work shift. Typically, individuals with intellectual or developmental disabilities employed in the community work part time.

A Pay Raise For Direct Service Workers

During July, the state has submitted numerous documents that could have a bearing on the September court session, which is officially termed a “status conference.” 

Among the state’s filings is a progress report on what Wood has described as the “huge mathematical exercise” of delivering $5 million in pay raises- an average of $600 a year per person before taxes  – to direct service workers and job coaches.

Pay raises have been described as essential to stabilize a workforce of direct service workers who are asked to do demanding jobs for less than they would make at a fast food restaurant. Turnover ranges from about 35 percent to 80 percent annually, according to testimony before the General Assembly earlier this year.

At a recent community forum, Jane Gallivan, the interim Director of Developmental Disabilities, said workers should have checks by Oct. 1 that incorporate retroactive pay going back to the start of the current fiscal year, July 1.

The judge’s order gave the state until Aug. 1 to “appropriately increase salaries, benefits, training and supervision for Direct Support Professionals and Job Coaches.”

Performance-Based Bonus Plan Outlined

Another money issue involves government reimbursement paid to the  agencies themselves.

The state has filed a progress report with the court on plans to use $6.8 million in performance-based bonuses approved by the General Assembly in a two-phase program during the current fiscal year.

The program is initially planned to reward service providers when they place clients in jobs, after the workers have been employed for three months, and again at the six-month mark.  

These incremental bonuses would total an average of $15,750 per person, although the number of incentives and the dollar amounts may be adjusted, Wood has said. 

The state has not yet begun taking applications from providers to participate in the program, according to a spokeswoman for the Executive Office of Health and Human Services.

The incentive program is to be piloted until December with a limited number of private service providers.

The judge’s order required the state to implement the initial phase of the program by Aug. 1, and to turn in evidence that all providers have signed performance-based contracts by Dec. 31.

A Call For A New Reimbursement Model

McConnell also called on the state to implement a new reimbursement model by August 1 that is “sufficiently flexible to allow providers to be reimbursed for services rendered, including, but not limited to career exploration discovery services, vocational situational assessments, work trials, development of job seeker profiles, job search and placement, job training and support, support coordination, and transportation services.”

There is similar language in the consent decree, which specified that providers should be paid for job-related and job counseling work that is “not face-to-face with the client.”

Although performance bonuses will be an added “layer” of payment to service providers in the incentive program,  according to Wood, she has said that the current reimbursement model will remain in place.

“The unit service model is the unit service model,” she said in a recent interview.

For daytime services, this model requires providers to document the time workers spend with clients, face to face, in 15-minute increments. Providers are not paid for time clients are absent for any reason, even though they must staff their programs at the same level, regardless of varying attendance.

The judge’s order says the state must now have a “new service package design” that includes up-front individual financial authorizations for supported employment services.

Wood has said specific authorizations for supported employment services will be awarded to individual clients of providers enrolled in the performance bonus program – an estimated 200 people in all.

Except for that group, clients will continue to have to trade in other types of authorizations, like generic day services, to get employment-related supports, she said.

The State's Other Progress Reports

To comply with other requirements of the court order, the state has submitted:

• ·An overall project management plan involving the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), RIDE, and the Office of Rehabilitation Services (ORS) in the state Department of Human Services

• ·A transition timeline covering services to young people with developmental disabilities aged 14 to 21, including details on which agency and the type of worker who will provide the respective supports. 

• A comprehensive communications plan, including details on relaying the status of pending applications for adult developmental disability services to applicants and their families.

There are now 224 pending applications for adult services, a slight reduction from a backlog of about 237 reported in mid-May.

As of last Friday, however, eligibility workers had screened all but four of the 224 applications and assigned them to one of three categories; “likely eligible, likely ineligible” or “need further documentation,” Wood said.

This screening process sets the stage for decisions on applications in the first two categories to be made within 30 days, she said, enabling the state to retire the backlog by the end of September.

The screening also enables eligibility workers to promptly notify those who need to submit more information. 

In the past, those who needed to gather additional documentation might not have known it until their cases got to the top of the pile and were reviewed by the eligibility workers – an indefinite time period. 

The initial assessment makes the decision-making process much more efficient, Sophie O’Connell, a spokeswoman for EOHHS, said in a follow-up email.

EOHHS, which has taken over management of the Division of Disabilities at BHDDH since the beginning of the year, has heightened its oversight of the application screening process during the summer and used “data and performance management to keep our efforts on track,” O’Connell continued.

“The team met every day in the morning and the afternoon to set goals, review progress and problem solve as needed” during the screening process, she said.

At a hearing in April, the DOJ presented evidence that some individuals turning 21 were waiting extensive periods of time to receive notice of eligibility for adult services and then had trouble finding programs suited to their needs.

The consent decree requires that community-based services, including supported employment, be in place for individuals with developmental disabilities when they reach the age of 18. 

State law also says that individuals with developmental disabilities are eligible for adult services at age 18, although as a practical matter, it is not uncommon for them to remain in high school until age 21.

Nevertheless, the consent decree anticipates a seamless and individualized transition between school and the adult world.

McConnell will hear the status of consent decree compliance at 2 p.m. Sept. 16 in Courtroom 3 on the second floor of the federal courthouse on Kennedy Plaza in Providence, according to a notice in the case file. 

Parental Concerns Over RI Consent Decree Persist; State Says No One With DD Will be Forced Into Job

 All Photos by Anne Peters

Jeanne Connery, mother of a young adult on autism spectrum, talks about a job trial that did not go well for her daughter during Wednesday's public forum at the Buttonwoods Community Center in Warwick.

By Gina Macris

“You threw the baby out with the bathwater when you eliminated sheltered workshops,” Brian Newton, the father of a woman with developmental disabilities, told Rhode Island officials at a public forum in Warwick Aug. 17.

In reality, most, but not all, sheltered workshops in Rhode Island closed abruptly in the wake of U.S. Department of Justice findings in 2014 that segregated employment – at sub-minimum wage – violated the Americans With Disabilities Act (ADA).

“What happened to my daughter’s right to work in a sheltered workshop?” he asked. She and her friends “were happy making 5, 7, 12 dollars a week,” Newton said.

“You have to admit there’s a certain population that will never work” at a regular job, he said.

Newton looked straight at Jane Gallivan, Rhode Island’s interim Director of Developmental Disabilities, who happens to have three decades’ professional experience in Maine and Delaware and a national reputation among her peers as an innovator.

Gallivan smiled as she looked back at Newton and slowly shook her head from side to side, kindly but firmly.

“Not to go there,” said Gallivan, who has extensive experience promoting job opportunities for individuals facing intellectual challenges.

Newton persisted, saying there’s a “certain percentage” that won’t be  “bagging groceries or doing piece work.” 

“I hope not,” Gallivan replied. “I hope it’s customized to what they can do.”

Newton:  “They have to have somebody with them.”

Gallivan

Gallivan: “People have job coaches now. You can have a job coach for a very long time.”

 Jeanne Connery, the mother of a 20-year-old woman on the autism spectrum, said her daughter has a high aptitude for math and science but does not connect with people.

She was placed in a job trial in a retail store, where she tagged and stocked shoes and boots, an experience which was not a good match for her, Connery said.

What her daughter needed was the Job Club at the Groden Center, a group that talked about the social and behavioral pointers that do not come intuitively to people on the autism spectrum, Connery said.

That job club did not have the capacity to take on another group member, according to Joseph F. Murphy, administrator in the state Office of Rehabilitation Services.

Mary Madden, Rhode Island’s Consent Decree Coordinator, said, “The bottom line is that this is a free country. Nobody is going to make your son or daughter go to work at a job that isn’t appropriate to them. I just want to say that there are a lot of misconceptions out there.”

There are now “400 people working in the community,” Madden said.

Most of them “are not bagging groceries or working at Home Depot,” Madden said. “We haven’t done a good job getting stories out” about individuals with unique skills matched to the needs of a company.

In fact, one person with a unique job was in the audience. Mark Susa of Warwick, with the help of his father, John Susa, and paid support staff, trains peers with disabilities – readers and non-readers alike -  to use public transportation independently.

Mark Susa also serves on the Board of Directors of the Rhode Island Public Transit Authority. 

Madden, meanwhile, said that regardless of the 2014 consent decree which mandated integration of individuals with intellectual and developmental disabilities,“people should be doing meaningful things every day.

Jennifer wood

“Not everyone is in the community all of the time. People only tend to work 10, 15, or 20 hours a week. They should be able the rest of the time to do something meaningful,” she said.

Gallivan, Madden and others, including Jennifer Wood, Deputy Secretary of Health and Human Services, gave an audience of about 75 people progress reports on budgetary and programmatic fronts since the last community forum in late April.

Among other things, front line support staff will see wage increases in their paychecks by October 1, along with a lump sum retroactive to July 1.

The General Assembly earmarked $5 million for wage increases to some 4,000 direct support staff in the current budget. The increase will average about 30 cents an hour, or about $600 a year, before taxes, based on a 40-hour work week.  

Another $6.8 million in the budget will be set aside for performance bonuses as private service providers meet certain benchmarks in moving clients into jobs in the community and helping keep those jobs.

During the last two months, there has been nearly a complete turnover in the leadership of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, with two key positions yet to be filled.

The state is looking for a new departmental director to succeed Maria Montanaro, who left at the end of June, as well as a permanent Director of Developmental Disabilities to replace Charles Williams, who retired at the end of July.

In the meantime, the deputy BHDDH director, Rebecca Boss, serves as acting director. She attended the community forum.

Gallivan said she can remain as Interim Director of Developmental Disabilities only until the end of September.

Recently retired from the top developmental disabilities post in Delaware, Gallivan had promised her mother, now 101 years old, that she could spend winters with her in her home in Florida. That was before Rhode Island came calling. Gallivan's mother is spending the summer on Cape Cod. 
“How many more winters are we going to have together?” Gallivan said. “That’s why I’m not going to continue much longer” than September, she said.

Wood, the Deputy Secretary of Health and Human Services, quipped that Gallivan’s mother has, in effect, set the timeline for filling the developmental disabilities director’s job.

Gallivan said the challenges Rhode Island faces are “not very different than in many of the other states.”

“We need to have a strong vision of what it is we want to have in Rhode Island,” Gallivan said. “That’s my task when I’m here.”

She indicated there are conflicting internal and external pressures on state government with regard to developmental disabilites.

“Internally, there’s a lot of pressure to deal with rising costs. Externally, the federal Centers for Medicaid and Medicare Services,  “who give us 50 percent of the money, wants us to look at services differently.”

By 2019, all states must provide Medicaid and Medicare services in all categories in the least restrictive setting that is appropriate, according to the latest rules of the CMS. The rule change is in keeping with the Olmstead decision of the U.S. Supreme Court, which clarified a mandate for integrated community-based services in Title II of the Americans With Disabilities Act.

The Olmstead decision also forms the legal basis for the 2014 consent decree in Rhode Island, which affects only daytime supports for individuals with intellectual or developmental disabilities.

Gallivan was asked about the Supports Intensity Scale, (SIS) a controversial needs assessment questionnaire that is used to develop individual funding allocations.

She said the Division of Disabilities “has begun to take a close look” at variability in the scores of the SIS at it has been administered in Rhode Island.

For an individual with developmental disabilities, the results of periodic reassessments are supposed to be relatively stable, because the need for support generally does not change dramatically over a lifetime.

However, analyses of SIS scores performed by a healthcare consulting company under contract to the state show that 46 percent of individuals who were re-assessed showed changed levels of need – and funding.

The review of the use of the SIS is “high on the agenda,” Gallivan said.

Sue Joinson  asked whether there will be an “opening of restrictions on residential placements,” which appear to be available only to families who are in crisis.

“Why is it that I can’t get a concrete plan” for the transition of the younger of her two daughters with developmental disabilities? she asked. She is 60 and her husband is 70, Joinson said.

Gallivan said residential services have been identified “as a need.”

“We need to evaluate all residential options” including shared living, “and move slowly,” she said.

Wood, meanwhile, said that the legal framework of the “least restrictive environment” in the ADA means that state policy does not assume that a group home is the most appropriate residential setting for an individual with developmental disabilities.

The state must offer a “continuum” of options suited to individual needs, she said.

RI Official Describes How Nearly $12 Million in DD Budget Responds to Consent Decree

By Gina Macris

Rhode Island is poised to offer financial rewards to agencies that meet certain performance goals in delivering supported employment services to adults with intellectual and developmental disabilities, according to the Deputy Secretary of Health and Human Services.

At a meeting of the Employment First Task Force on Aug. 9, Jennifer Wood explained how the state will use a total of nearly $12 million in funding authorized by the General Assembly in the current budget to implement the two year-old federal consent decree which mandates that adults with developmental disabilities have access to regular jobs in their communities.

A total of $6.8 million will be set aside for the supported employment bonuses –an estimated average of $15,750 after a client has been employed for six months. An additional $5.1 million has been earmarked for modest wage increases to about 4,000 agency staff who work directly with clients.

Ultimately, it is up to Judge John J. McConnell, Jr. of U.S. District Court to say whether these measures conform with a detailed order he issued in May requiring Rhode Island to lay the groundwork for long-term compliance with the consent decree, which remains in effect until Jan. 1, 2024.

At some point, the independent court monitor in the case, Charles Moseley, is expected to report to the court on whether he believes that state’s latest compliance efforts meet the requirements of the court order.

The May 18 order said that by Aug. 1, the state had to:

• implement performance-based contracts for supported employment services

• implement a flexible reimbursement model that pays service providers for the actual cost of providing services

• implement individual financial authorizations for clients receiving services that include specific allocations for supported employment services 

• increase salaries, benefits, training, and supervision for direct service workers and job coaches.s

The Task Force, made up of representatives of individuals with developmental disabilities, their families, and community organizations, was created by the consent decree as a bridge between government and the community. It met in the offices of the Community Provider Network of Rhode Island on Jefferson Boulevard in Warwick, 

Wood told Task Force members that the private agencies employing the workers will get lump sums for raises retroactive to July 1, but she could not say exactly when that will happen. Figuring out the payments has been a huge mathematical exercise, she said, and still requires changing the programming on state computers.

Based on current average pay of $11.55 an hour, the raises would be an average of $.30 an hour, Wood said, although actual salaries vary from one agency to another.

In a report to the court on July 29, the state said that it will require service providers to show that the money went to workers who have direct contact with clients, as the General Assembly intended.

Wood told Task Force members that state officials have been working with private service providers on the incentive program.

The July 29 report to the court said the incentive program will be implemented from August through next June, although the state has not yet begun taking applications from service providers. The program will serve a minimum of 200 clients with developmental disabilities. according to the filing with the court.

These clients will receive specific allocations for supported employment services as part of their individual financial authorizations from the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), Wood said in a brief interview after Tuesday’s meeting.

Others served by BHDDH who are not part of the supported employment incentive program will not be affected. That means that if they want supported employment services, they must continue to trade in hours from another category of daytime support.

The bonuses will be paid in stages; when a client gets a job and after three months and six months on the job respectively, according to the report to the court. It also said the dollar amounts and numbers of incentives may be adjusted.

Wood told the Task Force that the experience of the first six months of the program would be used to make improvements for the second half of the fiscal year.

After the meeting, she said the incentive program would be an added “layer” over the current reimbursement model, which requires agencies to document clients’ face-to-face interaction with direct service workers in 15-minute increments during the day. 

That “unit service model” will remain in place, she said.

Because the reimbursement system does not pay an agency when a client is absent, for whatever reason, the provider cannot collect the full amount of the client’s authorization for daytime activities.

The consent decree found fault with this method of payment. It required the following change:

“The State will ensure that its reimbursement model for day activity services is sufficiently flexible to allow providers to be reimbursed for costs (e.g. transportation to the job site, employer negotiation, counseling clients by telephone) that are: (1) directly related to providing Supported Employment Services to individuals in the Target Populations, and (2) provided when service provider staff is not face-to-face with a client. “

Monitor Gives RI Mostly Passing Grades, Except for Failure to Pay Bills

By Gina Macris

Update: At the close of business July 26, all nine developmental disability service providers owed money for start-up costs in converting from sheltered workshops to supported employment had received payment in full, according to a spokeswoman for the Rhode Island Executive Office of Health and Human Services. A list of the agencies and the amounts appear at the end of this post.

With one exception, the state of Rhode Island largely has met the latest deadlines of a federal court order which spells out how it must lay the groundwork for long overdue compliance with a 2014 consent decree meant to desegregate adults with intellectual and developmental disabilities.

The state has until Friday, July 29, to pay up to $800,000 in start-up costs, as specified in the consent decree, for nine private service providers converting to community-based services from sheltered workshops, according to the court monitor in the case, Charles Moseley.

If that deadline is not met, Mosely said in a new report to U.S. District Court Judge John J. McConnell, Jr., the judge should impose fines of $5,000 a day, with an additional $100 per day for each person protected by the consent decree whose employment or integrated day services are delayed or interrupted as a result of the violation.

Those fines, with a maximum of $1 million per year, were set forth in the order McConnell issued May 18.  It is the second time in three months that the state has faced the prospect of fines for failing to pay its bills in relation to implementing the consent decree.

Moseley said he had received assurances from Jennifer Wood,  the Deputy Secretary for Health and Human Services, Jennifer Wood, that the Friday deadline will be met.

The plans for converting sheltered workshop operations to integrated employment services had been approved by the state and the bills for start-up costs had been submitted by the agencies at least three months ago.

The start-up activities are necessary to enable the service providers to meet employment targets in the consent decree. Moseley noted, adding that this point was made during April 8 evidentiary hearing, which McConnell used as the basis for his order, issued May 18.

According to an investigation of the U.S. Department of Justice, the sheltered workshops violate Title II of the Americans with Disabilities Act, which says, in effect, that individuals with intellectual or developmental disabilities cannot be relegated to segregated settings simply because they are disabled.

In the 2014 consent decree, the state agreed to change its services to emphasize integrated employment paying minimum wage or higher and other community-based activities over a ten-year period.

Moseley’s most recent status report was submitted to the court last Friday, July 22.

In it, he said that the budget enacted by the General Assembly, a total of $246.2 million for developmental disabilities, will provide sufficient funding to meet requirements of the consent decree during the current fiscal year, which ends June 30, 2017.

The budget is still a little more than $11 million more than Raimondo had originally requested.

Budget provisions specifically related to the consent decree include:  

• A total of $9.1 million for wage increases and performance-based contracts for providers offering integrated employment supports.

• Funding for four state (staff) positions focused on consent decree implementation, including chief transformation officer, consent decree coordinator, employment specialist, and program development director.

Although the General Assembly did not approve Raimondo’s request for $5.8 million for a caseload increase, citing flat enrollment, Moseley noted that the legislature left the door open to reconsider if the numbers changed.

The monitor said 125 new cases had been approved during the fiscal year which ended June 30, although most of them were still in high school and were not expected to need a full array of adult services during the coming fiscal year. (According to the state's report, these cases encompassed ages 17 to 24.) 

Mosely did ask the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to report to him on any individuals protected by the consent decree “whose acceptance into the adult DD system is delayed or deferred due to lack of funding.”

McConnell’s order required the state to develop a management plan for accomplishing consent decree goals and tasks, and while Moseley said the plan met basic criteria, he found it lacking in detail on organizational strategies within BHDDH  and on interagency cooperation.

The lack of specificity is “understandable,” he said, given that three key positions at BHDDH are vacant. They are the department director, the director of the division of developmental disabilities and the chief transformation officer.

Moseley recommended that the state have until December 1 to expand and strengthen the management plan.

Other comments in Moseley’s status report focused on high school students with developmental disabilities who are 14 years and older and of particular concern to federal officials because they are at risk for segregation as adults if they are not afforded transitional services.

He secured a commitment that state employees from BHDDH or from the state Office of Rehabilitation Services in the Department of Human Services would be available to attend all Individual Education Plan meetings for special education students with developmental disabilities who are at least 14 years old.

Moseley noted that BHDDH has developed a protocol for timely communications with individuals having developmental disabilities and their families concerning applications for adult services.

He also recommended that BHDDH develop and distribute a description of the process for determining eligibility that is “clear, easy to access, user-friendly and written in plain language,” including contact information for BHDDH employees who would be able to answer additional questions.

“It is important to note that the eligibility determination process frequently is associated with a great deal of anxiety and concern among individuals with disabilities and their families,” Moseley said.

“By its nature, the process is technical, complicated, and difficult for a lay person to understand. Direct contact with an eligibility determination staff member offers an important opportunity for famelies to learn about the process and have their questions answered,” he said. 

Click here to read the monitor's full report

Service providers that received start-up costs for supported employment, as required by the monitor 

ri executive office of health and human services