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.

RI Gov Appoints Wallack HHS Secretary; Wood To Continue to Lead DD Effort; UHIP Woes Continue

By Gina Macris

The Rhode Island Department of Human Services has begun re-hiring - months after it laid off about 70 workers in conjunction with the roll-out of a dysfunctional automated benefits system – to help Rhode Islanders who face hardships from delays and denials caused by the broken computer system.

That is but one step going forward that Governor Raimondo announced at a media briefing Wednesday, Feb. 15, when she released a scathing report on the Unified Healthcare Infrastructure Project, or UHIP, compiled by Eric Beane, the acting director of the DHS and her chief operating officer.

Blaming the vendor, Deloitte, for delivering a “defective system,” Raimondo also warned that it will take 60 to 70 days to stop the backlog in applications from growing and about a year to fix the system.  Beane’s report, completed over the last thirty days, showed the problem was much worse than she had previously believed, the Governor said. 

She apologized to Rhode Islanders for a situation she said was “unacceptable, inexcusable, and intolerable.”  

She introduced Anya Radar Wallack as the new Secretary of Health and Human Services  (HHS). Wallack formerly served as Medicaid director and the director of the state’s health insurance exchange under the Affordable Care Act.

Elizabeth Roberts, who had made a career of health care reform as a state senator, lieutenant governor and HHS secretary, submitted her resignation Wednesday. Raimondo accepted it, she said, because she agreed with Roberts that the problem needed a “fresh set of eyes.”

 Roberts had taken the stance that the system could be fixed quickly, despite the glitches, but Beane’sunvarnished analysis showed that not to be the case, Raimondo said. 

As Roberts’ long-time deputy, Jennifer Wood had been heavily involved in trying to fix the troubled UHIP rollout. Wood, who has served both as Deputy Secretary and General Counsel of HHS, will continue as General Counsel and will remain in charge of the state’s efforts to comply with the 2014 federal consent decree mandating integration of daytime services for adults with developmental disabilities, according to Beane.

Among thousands who have suffered hardships from the UHIP fiasco are individuals with developmental disabilities applying for adult services from the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Last September, just as BHDDH solved an eligibility backlog in applications, many of them from young adults leaving high school, the introduction of UHIP caused months-long delays in the release of the money necessary to actually pay for approved services. In December, there were an estimated 100 young adults who had services delayed or expected services to be delayed as a result of the UHIP snafu, according to one informal report from the Rhode Island Parent Information Network.

Timely service is an issue of concern to an independent court monitor in the enforcement of a 2014 federal consent decree requiring community-based developmental disability services.

At the press conference, Beane said the backlog in all types of applications will continue to grow unless there is a “staffing surge to address the timelines.”

Beane’s report said Deloitte assured the state the computer system was ready to go live when it was not.

Raimondo said the state continues to withhold tens of millions of dollars (about $68 million of a $364 million project)  and is re-negotiating its contract with Deloitte. “It’s tense,” she said.  But she emphasized that UHIP can be fixed.

Raimondo said she has come to realize that the state needs to have more high-level officials with the technical expertise to analyze a vendor's claims and call out mistakes. In general, the public sector has been lacking in that regard, she said.

There had been warnings from federal officials that the computer system was not ready for a state-wide roll out, but human services officials decided against a try-out period.

Former DHS director Melba Depena Affigne and her chief digital officer Thom Guertin resigned in January under pressure from Raimondo. 

Click here to read Beane's report

Roberts Resigns as RI Health and Human Services Secretary; Wood's Future Role Unclear

By Gina Macris 

Rhode Island’s Secretary of Health and Human Services, Elizabeth Roberts, resigned late Tuesday, Feb. 14, over the quagmire created by UHIP, the state’s computerized human services benefits system.

Governor Gina Raimondo, in a press conference outside her office, said she met with Roberts “and she presented me with her resignation, which I accepted.”

“It was her choice, and I commend her for it. I think she realized, as I realized, that the challenges we’re having with UHIP require a new set of eyes, and a fresh set of eyes. “

Roberts’ top aide for many years, Jennifer Wood, who is Deputy Secretary of Health and Human Services, has been involved closely with the roll-out of the UHIP computer system and also has directed the state’s compliance effort with a 2014 federal consent decree affecting adults with developmental disabilities.

Asked whether Wood’s position is at all affected by the problems of the UHIP rollout, Raimondo’s spokesman, David Ortiz, said in an email that the Governor would give a “full update” on Wednesday.

The resignation came on the eve of a briefing Raimondo has scheduled for the media on Wednesday, Feb. 15, to discuss an analysis of UHIP conducted during the last month by her chief operating officer, Eric Beane, and steps that will be taken going forward.

“Secretary Roberts has been in public service for decades and has done so many good things for the people of Rhode Island,” Raimondo said.

In a statement, Raimondo said Roberts has “fought her entire career to expand access to affordable healthcare for more people. As my Secretary of Health and Human Services, Elizabeth played a key role in our successful efforts to drive Rhode Island’s uninsured rate to one of the lowest in the nation while reducing costs.”

Roberts was criticized by Nicholas A. Oliver of the Rhode Island Partnership for Home Care.

In a statement, he said that “Roberts’ rigid view of the state healthcare system blinded her from understanding the realities of operating healthcare practices and agencies in Rhode Island.”

“Because Roberts was a visionary stemming from her healthcare public policy interest as a state senator and a lieutenant governor without practical operational experience as a healthcare provider, her naivete and inexperience led to her ineffectiveness in the role of Secretary,” Oliver said.

Roberts’ is the third resignation connected to the $364 million computer fiasco. Melba Depena Affigne, director of the Department of Human Services, and her chief digital officer, Thom Guertin, resigned in January under pressure from Raimondo. 

Monitor Seeks Changes in BHDDH Funding Methods To Satisfy RI Consent Decree

By Gina Macris

Rhode Island’s method of allocating funding to adults with developmental disabilities does not meet the requirements of a 2014 consent decree in that it does not take into sufficient account the needs and goals of the individuals involved, according to a new report from an independent court monitor.

The monitor, Charles Moseley, wants the state to review and modify its methods of assigning funding to make sure that “service dollars are targeted to meet the individual’s personal goals and preferences.”

That’s not all. In a report submitted to the U.S. District Court Feb. 10, Moseley incorporated recommendations from outside experts that would bring sweeping changes to the organization of the state Division of Developmental Disabilities (DDD).  (A court hearing scheduled for Feb. 14 has been postponed.) 

The report focuses on the degree to which community-based non-work services are individualized, concluding that Rhode Island has a way to go to achieve compliance.

It also incorporates recommendations from a quality improvement expert who suggested a merger of fragmented licensing, investigative, and program improvement functions at DDD, clearer regulatory standards, and a more precise definition of the future role of the social worker in light of burdensome caseloads (last reported by the state at 205 clients per worker.)

The consultant, Gail Grossman, a former Massachusetts state official, envisioned a unified and continual quality improvement initiative encompassing both DDD and the Office of Rehabilitation Services at the state Department of Human Services.  Both agencies oversee employment-related  services for adults with disabilities.

Grossman said there should be enough staff to review the performance of 38 service providers every two years. ORS now has only enough staff to make the circuit every nine years,  which Grossman found “totally insufficient.” 

The court monitor asked the state for quarterly progress reports, beginning April 1, on its progress in meeting a number of goals. They include specific quality improvement recommendations made by Grossman as well as modifications in funding methods and other changes necessary to personalize the planning and delivery of services according to the needs and preferences of individuals entitled to them.

Recommendations concerning the funding of individualized services resulted from a review undertaken in November by Moseley, A. Anthony Antosh, director of the Sherlock Center on Disabilities at Rhode Island College, and a Vermont-based independent consultant, William Ashe. They examined the non-work community-based services provided to a sample of 21 adults with developmental disabilities who had widely varying profiles.

From Ashe’s report on the study of 21 individuals and from other data, Moseley concluded that so-called “person-centered” planning and community-based services do not meet the requirements of the consent decree.

The consent decree defines “person-centered planning” as a “formal process that organizes services and supports around a self-directed, self-determined and goal-directed future.”  It gives additional detail on how such a plan is to be written.

Ashe and Moseley emphasized that the person-centered plan should drive services, not a funding formula based on a person’s ability to function independently, as is currently the case.

“The funding that agencies receive is based on assessed ‘functioning level’ and not based upon what people may want or really need,” Ashe wrote.

Moseley put it this way: there should be a connection between a “person-centered planning process” and funding methods so that “service dollars are targeted to meet the individuals personal goals and preferences.”

Moseley also wants the state to strengthen its oversight and the capacity of private providers to deliver “truly person-centered plans and services based on clear standards and expectations.” 

Ashe said the annual plans written for the 21 individuals in the study were too similar. The state’s planning process “feels rigid and automatic,” and an individual’s current plan “may often look remarkably similar to the one that was done last year.”

“Agencies are often in a situation where their staffing levels prohibit them from individualizing supports to the extent that is necessary to really implement services that are based upon real choice, ” Ashe wrote.  

What appears to be lost in the allocation process is an idea of the outcomes that are important for the persons involved, Ashe said.

Ashe said the consent decree recognizes that the state uses the Supports Intensity Scale, a standardized assessment tool, to determine an individual’s need for support.

The current funding method connects the results of the assessment to one of five allocation levels, based on an algorithm developed by a healthcare management consultant for the state. Planning for services occurs only after funding limits have been established.

In some of the case records reviewed by Ashe, Moseley, and Antosh, it was “exceedingly difficult to see how the service to be delivered could ever be realized to the standard expected by the consent decree,” the report said.

For most of the individuals whose services were reviewed, the choice of activities was limited..

Ashe placed a high priority on training for everyone involved in developmental disability services -  private providers as well as state workers, services recipients, their families, and advocates - on the meaning of purposeful activities in integrated, community settings and how to provide them.

Click here to read the monitor's report. 

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.

Monitor Wants Mountains of Details to Push Compliance With RI Olmstead Consent Decree

By Gina Macris

If the state of Rhode Island were building a network of roads to help adults with developmental disabilities get to their jobs, town libraries, or classes at the local Y, then construction could be described as well underway.

But that’s not to say the infrastructure is complete and travelers are rushing to use these new highways on their way to richer lives. 

This image of a work in progress serves, in effect, as a snapshot of what a federal court monitor sees in an ongoing transformation of the state’s developmental disability service system. 

In a recent report to U.S. District Court Judge John J. McConnell, Jr., Charles Moseley says Rhode Island has made solid gains in its efforts to comply with a 2014 consent decree enforcing the Olmstead decision of the Americans with Disabilities Act, which requires disability-related services to be offered in the least restrictive setting that is therapeutically appropriate. And that setting is presumed to be the community. 

The state has increased funding by $11 million, filled key leadership posts, offered more training, and put into place policies and programs to help adults with developmental disabilities find jobs and enjoy activities in their communities.

Priorities for Compliance 

 While acknowledging these efforts, Moseley indicated the state is still out of compliance with the consent decree. Among his top recommendations, Moseley said the state must:

• Strengthen supported employment for young adults up to the age of 25. Job placements for young adults are “significantly below consent decree requirements,” he said.

• Increase funding to expand supported employment and community-based, integrated day services during the next fiscal year, beginning July 1, and in future budgets. The state “needs to take steps to ensure additional funding is available to address caseload increases” related to special education students moving to adult services, he said.

• Increase providers’ capacity to provide services. “Provider agencies do not yet have the numbers of trained staff needed to ensure the provision of services and supports required by the consent decree” Moseley said.

• Eliminate service delays.

Moseley says the Division of Developmental Disabilities (DDD) and the Office of Rehabilitative Services (ORS) have said that service providers can meet the need for employment and community –based supports required by the consent decree.

“But families of individuals with IDD (intellectual or developmental disabilities) who are requesting DDD services for the first time have reported to the monitor that access to needed supports has been prevented or delayed by providers who refuse to accept new referrals,” Moseley said.

“Provider refusals appear to be directly linked to DDD payment rates and rate setting practices,” he said.

Twenty-two of the state’s 36 private service providers have agreed to participate in a program of one-time bonuses paid for staff training, job placements, and job retention, according to state officials. 

That initiative is still accepting applicants and cannot yet be evaluated, Moseley said, although it is expected to ease the service gap over time.

Moseley found it “important to note,” however, that the state has not offered any other kinds of incentives to agencies that chose not to apply to the incentive program, or to providers that did not receive start-up costs to convert sheltered workshops and day programsto community-based operations.

Moseley is asking the state to give him an accounting by Feb. 28 of the number of clients who were refused or faced service delays between July and December of 2016, including the names of the agencies, the reasons given, the length of any delay, and the state’s recommendations for improving access to services.

He also gave notice that he will want a similar report for the three-month period between January and March, as well as another update at the end of June to use as a guide in determining whether recent initiatives put into place by the state are having a positive impact.

State is Playing Catch-up

Moseley submitted a 48-page report to McConnell Jan. 25 in anticipation of a hearing Feb. 14 on the status of the consent decree.

The state’s positive momentum, supported by the $11-million budget increase, is all the more significant because most of it has been accomplished in the year since McConnell became personally involved in the enforcement of the consent decree in January, 2016.

After McConnell signaled he would take the bench on the case, the direct day-to-day supervision of the developmental disabilities division has shifted from the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals to Jennifer Wood, Deputy Secretary of the Executive Office of Health and Human Services.

Even though Wood has put efforts to comply with the consent decree into overdrive, the state is still playing catch-up with the progressively stiffer requirements of the highly prescriptive agreement, which was marked by two years of inactivity at the outset.

The consent decree, signed April 8, 2014, has a ten-year term. At the end of 2015, seeing little progress, the U.S. Department of Justice and the court monitor asked McConnell to take the case under his wing.

During the most recent hearing, in September, 2016, the state avoided contempt proceedings for failing to hit two targets. One of them, the disbursement of raises for direct service workers, was accomplished Oct. 1. The other was the lag in employment of young adults – a problem that has only grown bigger.  At the same time, McConnell said he relied on Moseley to hold the defendant’s “feet to the fire.”

Moseley Wants More Information

Even at the September hearing, Moseley was digging deeper. He pressed the state to better identify young adults and high school special education students who should be counted as members of the consent decree population and enjoy protections designed to prevent them from living lives of isolation.

Moseley’s report relies on data available as of Oct. 31, but he says the state subsequently informed him that the count of young adults who left school since the 2013-2014 academic year has increased by 350, from 151 to 501. 

The report says 29 of these young adults have received job placements, a number that is more than six months old. The consent decree required “all” members of this group to have at least part-time jobs by July 1, 2016.

The monitor continues to press DDD, ORS, and the Rhode Island Department of Education (RIDE) for more detailed information on several areas of implementation where he sees the state lagging.

By Feb. 28, Moseley wants reports on:

 Staff Training

• a plan outlining how DDD and ORS will provide the monitor regular updates on appropriate training for direct service workers at various agencies who provide daytime services. The current number of trained staff statewide, 396, is too low, he says.

Average Hours Worked

• a plan and strategy for increasing the average number of hours per week worked by individuals in supported employment. The current weekly average, 8.6 hours, falls far below the average 20 hours specified in the consent decree.  Implementation of the plan should begin March 1, Moseley says.

Career Development Plans

• an umbrella “operational plan” for 1) expanding critically-needed training for professionals and families on career development,  2) ensuring more than 3,000 individuals protected by the consent decree have high quality career development plans by June 30, and 3) making provisions for regular updates to the monitor on this topic beginning April 1. Currently, 774 individuals have career development plans, according to Moseley’s data.  These plans are intended not only to describe individualized long-term goals, but to include strategies and a sequence of real-life activities for helping individuals work toward those targets. Moseley said there are signs such details are lacking from many existing career development plans.

High School Internships

• data from RIDE and ORS showing the number of high school special education students who participate in at least two trial work experiences, each lasting a minimum of 60 days. RIDE has indicated it is keeping track of these numbers but has yet to provide the monitor with the information, Moseley says.

• data from DDD showing implementation of a so-called “transition timeline”, including notifications to families and other activities involving special education students in high school that prepare them for adult living.

Benefits Counseling

• a report from DDD on how it will ensure individuals deciding on jobs receive counseling about the way their earned income might affect the government assistance they receive, as well as evidence that the counseling is covering the required information. The monitor found that only 65 people had benefits counseling last June 30, the latest date for which statistics were available.

Moseley also noted that the state has developed a process for individuals to seek a variance if they want to opt out of employment, but no one has applied for one. He said he have more to say about the variance process by the end of the month but wants recommendations from the state by March 31 on ways to improve the variance process.

Employment First Task Force

Moseley addressed the future of the Employment First Task Force, saying it “has the potential to provide an independent and meaningful role in supporting the ability of the State to accomplish the reforms identified by the consent decree." 

“But change needs to take place if the task force is to achieve its full potential,” he said.

The consent decree intends the task force as a bridge between the community and the government, or as Moseley put it, “an independent, voluntary group of advocates and stakeholders who are not directly involved in state agency operations.”

While the consent decree says the group should make policy recommendations, it doesn’t say what areas the task force should research, or to whom it should make its recommendations, said Moseley. He also noted that it has no administrative staff or oversight from any state agency.

Moseley said he wants some changes in the task force “without compromising the separate and independent voice of advocates and stakeholders.”

Ultimately, he wants the task force to make annual reports for the monitor, the state, and the public on barriers to implementing the consent decree and ways to overcome them.

Moseley called on EOHHS to give the task force some staff support. And he asked Kevin Nerney, the task force chairman, and Jennifer Wood, the Deputy Secretary of EOHHS, to convene a small work group to map out the respective roles and responsibilities of the state and task force members and to report back to him by Feb. 28. 

Click here to read the entire monitor's report.

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. )

New ABLE Program, Hailed As "Great Opportunity," Allows Disabled To Save Without Affecting Benefits

By Gina Macris

RI GEN TREASURER SETH MAGAZINER

A new Rhode Island ABLE savings account program for disability-related expenses, which quietly began accepting applications a few weeks ago, is expected to have a significant impact on the quality of life for individuals who receive Social Security and Medicaid-funded services.

At a State House press conference Thursday, Jan. 12, General Treasurer Seth Magaziner and Health and Human Services Secretary Elizabeth Roberts formally launched Rhode Island’s version of the savings program, authorized by Congress nationwide in 2014 through the Achieving Better Life Experience  Act. The General Assembly passed its own enabling legislation in 2015. 

Until now, adults with developmental disabilities have not been able to accrue more than $2,000 in savings without risking Supplemental Security Income and Medicaid benefits, living in what Magaziner termed a “perpetual state of vulnerability.”

“People with disabilities live in poverty,” said Joseph Ferreira, a member of Magaziner’s staff who has cerebral palsy.

“It’s a terrible thing to have the greatest nation in the world and yet live in poverty,“ Ferreira said, calling the ABLE Act “a great opportunity.” He has worked in the Treasurer’s office for 15 years, he said.

The ABLE program, similar to 529 College Savings Plan programs, will allow individuals and families to save up to $14,000 a year, or a maximum of $100,000, without affecting government disability supports, Magaziner said.

Joseph Ferreira

Roberts said the ABLE account “does a remarkable job in removing obstacles” from the lives of people who have been hamstrung in any effort to gain greater financial independence - even as a federal consent decree in Rhode Island is encouraging them to work.

M. Teresa Paiva Weed, D-Newport, president of the Rhode Island Senate, said the law is aptly named, because it is a “real program that will help real people” have better lives.

She said families, who often struggle to support children with disabilities once they get out of school, will now be able to save for them in the same way they set money aside  for college-bound youngsters.

Magaziner said that in a “soft launch” of the program about a month ago, a woman with disabilities used her ABLE account in conjunction with a “gofundme” campaign online to raise money for a vehicle modified so she could drive it.

The campaign was set up so that donors’ contributions would go directly into the woman’s new ABLE account, he said. “That’s something I never would have thought of,” he said.

ABLE accounts, managed by Ascensus College Savings, offer savings and investment options, and withdrawals for disability-related expenses are tax-free, according to a brochure distributed at the press conference.

Disability-related expenses may go for education, health and wellness, housing, transportation, legal fees, financial management, employment training and support, assistive technology, personal support services, and other categories.

There is a $40 annual maintenance fee, as well as investment fees of less than four tenths of a percent of the total value of the account, according to a spokesman for Magaziner. A debit card option will be introduced in March.

To keep fees low and maximize investment options, Magaziner said, Rhode Island has joined a dozen states in the national ABLE Alliance, all working with Ascensus as the program manager.

He said he is pleased that Asensus has an office in Warwick. Ascensus’ President and CEO, Jeff Howkins, attended the press conference in the State House Library. 

Magaziner said the program would not have been possible without state legislation enacted in 2015 under the sponsorship of Sen. Adam Satchell (D-West Warwick) and Rep. Robert Nardolillo (R-Coventry.)

Applications are accepted online at ri.savewithable.com or by phone at 1-888-609-8915, from 8 a.m. to 5 p.m., Monday through Friday.

Paper applications will be available at the end of February, according to spokeswoman for the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH). She said employees of several human service agencies are being trained to help applicants fill out the forms.

In addition, the Treasurer's office stands ready to train any organizations interested in helping individuals file applications, she said.

Rhode Island’s ABLE program also has an advisory committee that includes community partners advocating for enrollment. 

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.  

RI Job Seekers with DD May Seek Help at Provider Fair Friday as State Tries to Boost Employment

 By Gina Macris

Rhode Islanders with developmental or intellectual disabilities who want to work can explore the job-development services of 14 private agencies during a fair Friday, Jan. 6, at the Arnold Conference Center on the campus of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals in Cranston. 

The fair runs from 9 a.m. to 1 p.m., according to a spokeswoman for the Executive Office of Health and Human Services. 

Of the state’s 36 private providers of developmental disability services, 14 have confirmed their attendance, the spokeswoman, Sophie O’Connell, said Wednesday. 

They are:

·         Avatar Residential, Inc.

·         Bridges, Inc.

·         Community Living of Rhode Island, Inc.

·         Community Work Services

·         Frank Olean Center, Inc.

·         Gateways to Change, Inc.

·         James L. Maher Center

·         Looking Upwards, Inc.

·         Perspectives Corporation

·         J. Arthur Trudeau Memorial Center

·         West Bay Residential Services, Inc.

·         WORK Inc.

·         Work Opportunities Unlimited Contracts, Inc.

·         Seven Hills Rhode Island 

A total of 17 agencies have finalized contracts with the state that will reward them with one-time stipends for staff training in supported employment, the placement of clients, and job retention for six months, according to O’Connell.  

A federal court order required the state to have performance-based contracts in place by Aug. 1, 2016 but negotiations between the provider agencies and the state on the performance-based supported employment contracts dragged on  through December. 

The contracts are intended to help the state comply with a 2014 federal consent decree requiring it to desegregate daytime services that emphasized sheltered workshops and isolated day programs. 

The original job fair flier put out by BHDDH in early December said more than 20 providers would attend Friday’s event, but that projection now appears to have been overly optimistic. O’Connell said the state hopes additional providers will commit to the fair before Friday morning. 

As recently as three weeks ago, members of the community-based Employment Force Task Force created by consent decree expressed concerns that the one-time bonuses in the incentive program were not enough to sustain expansion of job development and supported employment services. 

O’Connell, however, later said that agencies submitting applications for the program were able to “outline their ability to serve both their current clients and new populations.” 

She said Jan. 4 that the state hopes to finalize contracts with all the agencies soon. The state will monitor the agencies’ work in job-hunting and job retention as part of an effort to evaluate the impact of the program in the community, she said. 

Individuals who already are served by a private agency, as well as those who direct their own services, with family support, are welcome to attend.  Questions regarding the event may be directed to Tracey Cunningham, Associate Director of Employment in the Division of Disabilities, at 401 462-3857 or by email at tracey.cunningham@bhddh.ri.gov.

Kerri Zanchi, Former Massachusetts Rehabilitation Official, Named DD Director for Rhode Island

By Gina Macris

Kerri Zanchi, a former high-level developmental disability service official in Massachusetts, has been named Rhode Island’s Director of Developmental Disabilities in the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Zanchi, who has past ties to Rhode Island, begins her job here Jan. 23, according to Rebecca Boss, acting director of BHDDH.

 “We are certain that she’ll be a strong leader and we look forward to introducing her to you at our upcoming community forums” in February, Boss said.

“She has focused on quality services that encourage independence as well as community integration.” 

Boss said Zanchi embodies four characteristics at the top of the list of qualities identified in community forums held before the search: 

• ·  hands-on experience with individuals living with developmental disabilities
• ·   experience with government
• ·  a deep understanding of how Medicaid works
• ·  good communication skills

Zanchi, meanwhile, issued a statement saying she accepted the job because of the “tremendous opportunity” and “strong commitment” on the part of state leaders “to transform the development disability system to deliver high quality services that individuals and families deserve.”

She praised the “strong vision and clear goals” guiding the work of the developmental disability leadership team and said she found the community “engaged, with much expertise to offer as this work unfolds.”

“I look forward to partnering with individuals, families, the community and my colleagues in government to build on this momentum and move the service system in a direction that results in better services, better outcomes and more opportunities for all Rhode Islanders living with developmental disabilities,” Zanchi concluded.

Her salary will be $102,860, according to a spokeswoman for the Executive Office of Health and Human Services (EOHHS).

Zanchi, 43, is a native of Massachusetts who grew up in East Lyme, CT. She began her career working directly with adults with developmental disabilities in Rhode Island and received her master’s degree in social work from Rhode Island College in 1999.

After completing her studies, she worked at the administrative level in both the public and private sectors in Massachusetts, rising in 2014 to Assistant Commissioner of the Massachusetts Rehabilitation Commission, one of several agencies falling under the jurisdiction of that state’s Executive Office of Health and Human Services.

The Commission provides an array of services that promote empowerment and independence for individuals with disabilities, according to its mission statement. As Assistant Commissioner, Zanchi provided leadership and advocacy for six departments of state government focused on community living, covering the gamut of concerns from consumer issues to independent living, assistive technology, protection from abuse and specialized services for individuals with brain injuries, according to a resume released by Rhode Island officials.

The resume says she implemented performance management practices and contributed to cross-agency collaboration. These issues are relevant in Rhode Island because of the demands of a 2014 consent decree that requires various state agencies to work together to  desegregate daytime services for adults with developmental disabilities following specific goals set by the U.S. District Court. 

Zanchi left Massachusetts government in the fall of 2015, according to the Massachusetts Rehabilitation Commission’s annual report that year. She became Associate Executive Director of the Center for Living and Working, Inc., based in Worcester, leading the organization through a restructuring that emphasized staff development, quality improvement and performance-based outcomes.

In addition, she served as Coordinator of the Massachusetts Aging and Disabilities Resource Consortium for five partner agencies in central Massachusetts, strengthening community and provider collaborations, according to the resume.

Zanchi will succeed Charles Williams, who retired as Director of the Division of Developmental Disabilities last July 22.

The current budget for the Division of Developmental Disabilities is $246.2 million, providing services for a total of about 4,000 adults with intellectual and developmental disabilities, most of whom receive direct care from 36 private agencies under contract with the state.

The division director oversees a staff of about 350 that determines eligibility, the level of individual need, conducts case management, oversees the state-run group home system, and provides administrative support, according to the EOHHS spokeswoman.

It is expected Zanchi will play a key role in shaping the state’s implementation of the 2014 consent decree, which has come under close scrutiny by District Court Judge John J. McConnell Jr., after the federal Department of Justice challenged the state’s progress.

The EOHHS spokeswoman, Sophie O’Connell, said Zanchi “will work very closely with the leadership teams at BHDDH and EOHHS to move forward the Division’s work to achieve the terms of the consent decree and strengthen services for individuals with developmental disabilities.”

O’Connell noted that both the state’s Consent Decree Coordinator, Mary Madden, and the Deputy Secretary of Health and Human Services, Jennifer Wood, served on the search committee for the new director.

In the last year, since McConnell made it clear he would personally weigh in on the progress of the consent decree, Wood has taken the lead in assembling a team of officials to respond to the court’s requirements. She has a legal background in developmental disability law.

Besides Wood and Madden, the search committee for the developmental disability director included Brian Gosselin, Senior Strategy Officer at EOHHS; Jane Gallivan, former interim director of the Division of Developmental Disabilities and a consultant to the state; and Deanne Gagne, CEO/Founder of Bridge Building Services; Coordinator of Advocates in Action; and Assistant Coordinator of the Cross Disability Coalition.

A total of 74 applications were screened. Nine candidates were interviewed initially and four were called back for second interviews. The names of finalists – O’Connell did not say how many – were forwarded to Boss and to Health and Human Services Secretary Elizabeth Roberts, who made the final decision. 

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.)

NEW: Podcast on Olmstead Consent Decree in RI

Frank Prosnitz, host of Open Forum on Radio Station WADK in Newport, RI, asks reporter Gina Macris what she's learned about the federal consent decree on developmental disabilities in Rhode Island . . . after a little reminiscing about news-gathering in general. 

RI Tries To Improve Assessment Used For DD Funding; Families Not Feeling It Yet

Christine Vriend, Senior Trainer for AAIDD

By Gina Macris 

A two-hour discussion about the Supports Intensity Scale, used by Rhode Island to assign funding to adults with developmental disabilities, exposed a big gap between the vision of the professionals who created the assessment and the practical experience of families and service providers who must respond to the extensive questionnaire.  

At the Arnold Conference Center in Cranston Nov. 17, Christine Vriend, senior trainer for the American Association on Intellectual and Developmental Disabilities (AAIDD), explained the newest version of the assessment as a guide for developing better individualized plans of support.

But many family members and service providers described the SIS as a tool for cutting funding. They said interviewers administering the questionnaire have been argumentative and combative, showing little respect for them, while seeming determined to lower assessment scores.

Heather Mincey, administrator of the Division of Developmental Disabilities, said she and other officials are working as hard as they can to make changes.

Mincey

Vriend, said new features of the Supports Intensity Scale are designed to better capture the need for support for exceptionalmedical needs or behavioral issues. 

AAIDD did not design the SIS as a funding tool, but many states use it that way, Rhode Island included. 

In July, in response to a federal consent decree and U.S. District Court order, the state changed its assessment policy in an attempt to separate a determination of what kind of support someone needs from the allocation of money to pay for it. The U.S. Department of Justice and the independent court monitor in the consent decree both have said there was a conflict of interest in having the same agency of state government conduct the assessments and determine the funding.

Most provisions of the consent decree address a shift away from sheltered workshops and isolated day programs to a network of community-based job and leisure activities, in keeping with the 1999 Olmstead decision of the U.S. Supreme Court, which ruled that a reliance on segregated services violates the Americans With Disabilities Act.

Since July, state developmental disabilities officials, under the direction of the Executive Office of Health and Human Services (EOHHS), have begun to re-train their assessors to use the relatively new SIS-A, released by AAIDD in 2015.

One mother, Tammy Russo, had an interview with a newly re-trained assessor last week. She said the assessor collapsed eight questions into one, stringing together references to several types of medical care into a single sentence, making the information sound so complex that she couldn’t follow what was being said.

Russo, however, said the interviewer ultimately gave her a copy of the questionnaire so she could read along as the questions were being asked.

Russo was asked by officials at the forum to follow up on her experience by calling the supervisor of the SIS interviewers.

Ed McLoughlin, another parent, said that in the SIS interview he attended, “the woman clearly was working to get a lower rating.”

Mincey said that kind of feedback has been discussed a great deal: “If you’re not describing exactly what you need and we’re not getting what you need, that information is not part of the SIS.”

The key to answering the questions, Vriend explained, is not to explain what a person can or cannot do but to think about what supports are needed for someone to be successful at a particular activity – even a hypothetical one. Interviewers are instructed to ask all the questions on the form, whether the topics fit an individuals’ current activities or not.

She declined to answer funding-related questions, emphasizing that she works for AAIDD, not the state.

One woman, who declined to give her name, said a mother who knows exactly how to answer questionsin a SIS interview had a “really horrific” experience when her daughter’s funding was reduced from the highest levelto an average level, even though there had been no change in her condition.

“What the mother and the agency had to go through (on appeal) was heartbreaking,” the woman said.

Megan DiPrete, a family member of an adult with developmental disabilities, said it’s her experience that SIS interviews are conducted in a “combative environment.”

“It’s clearly an issue that needs to be addressed, she said.

DiPrete

Another woman spelled out the disrespect she said she witnessed, although she declined to give her name because she works for a direct service provider and is not authorized to speak on the agency’s behalf.

The woman said she asked the interviewer not to speak so fast so that the person under assessment could better follow the conversation. The interviewer refused, saying that if she did so, she would stutter.

Then three people told the interviewer that the person under assessment could not advocate for himself, and the interviewer responded, “Well, he can talk can’t he?”

Vriend likened the discussion that is supposed to occur at SIS interviews as a “table of supports.” The various participants are not supposed to be “butting heads,” she said.

Interviewers have a responsibility to describe the question using consistent language and to help respondents understand the intent of the item, she said. It is important for respondents to be “fully engaged in that process” and provide “perspective and justification for a score.”

All sides should be in agreement with the scores, but if “if you disagree, you should have an avenue to take this further,” Vriend said.

Vriend said AAIDD verification procedures generally confirm the accuracy of the SIS as it is administered in the field. The SIS is used in about half the United States and abroad.

But recurring complaints about the SIS in Rhode Island that have surfaced at public sessions throughout the year indicate there a lack of public confidence in the SIS. AAIDD says public confidence is important in the successful implementation of the assessment program.

In her role as a trainer, Vriend addressed one of the most controversial parts of the assessment in Rhode Island; the need for exceptional supports for individuals for behavioral issues. Those supports can be labor-intensive, and therefore costly. 

She said,  ”We’re not rating the severity of the behavior or how often it occurs. What we’re rating is the support needed to address that behavior or prevent it. If you haven’t had an assault in three years, but one of the reasons is solid support, then we’ve got to recognize that.”

In other public sessions, parents and providers have expressed the view that in some cases, once such exceptional supports are in place and have been given time to stabilize a client, the assessor looks only at the improved behavior. In those cases, all the effort put into realizing those improvements are discounted in the ratings, which lead to lower scores and less funding, they say.

Several suggestions emerged from the audience to help family members and providers feel more confident in the SIS process. They urged the state to put into place several safeguards. Among them:

·         Families and providers should be given copies of the questionnaire so they can read the questions as they are being asked. (On Nov. 18, Mincey issued a statement saying this change will be implemented immediately.)  

·         Families and providers should be informed at the interview that they have a right to appeal and should be given contact information for lodging complaints. They should be asked to fill out evaluation forms on the interviewers

·         Families and providers should be given copies of the completed questionnaires to better understand the scores.

Individuals with developmental disabilities and their guardians have a legal right to their own health care records, including assessments like the SIS, according to the U.S. Department of Health and Human Services.

At the meeting, Mincey acknowledged that families have had difficulty in the past obtaining copies of their loved ones’ SIS results, but she said the Division of Disabilities is now granting those requests.

Mincey referred questions about the SIS to Donna Standish, the SIS supervisor. Standish can be reached at 401-462-2628 or Donna.Standish@bhddh.ri.gov

RI EOHHS Clarifies Status of Probationary DD License Involving Maher Center in Newport

By Gina Macris

The James L. Maher Center of Newport is correct in saying that the state has not downgraded the developmental disability service license of the entire agency, a spokeswoman for the Rhode Island Executive Office of Human Services (EOHHS) said Tuesday, Nov. 15. 

The Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has put one group home, at 228 Carroll Ave., on conditional, or probationary, status as a result of an internal investigation that found its staff abandoned a resident at Newport Hospital May 3, according to the spokeswoman.

But Jennifer Wood, the Deputy Secretary of Health and Human Services, says that "the accountability for the failure to comply with regulations and requirements at the Carroll Avenue group home resides with the management of the agency as a whole." 

The Maher Center has appealed the conditional license, which lasts for six months. During that period the agency is subject to heightened oversight by the state, according to Wood.

On Nov. 16, Wood elaborated: "In the currently pending matter BHDDH will prove that the agency did not operate that home consistent with the regulations, and unless they prove that they are operating consistent with the rules during the conditional license period, they may not be able to retain a license to operate that home in future.  

"If we also learn that other homes for which they are licensed are not operating consistent with the regulations, then we would take additional action regarding the licenses for those other facilities. We are very committed to more closely supervising the agency and in particular the management of the agency regarding the appropriate operation of the Carroll Avenue group home as well as all homes operated by the agency," Wood said Nov. 16.

The Maher Center will have its say before an EOHHS hearing officer, according to the EOHHS spokeswoman, but that session has not yet been scheduled. 

The Maher Center’s executive director, William Maraziti, issued a statement Nov. 10 denying the agency has ever abandoned any client. 

The agency is “extremely disappointed” with a “flawed investigation” that led to “unsubstantiated conclusions” by the BHDDH investigatory unit, according to the statement Nov. 10. 

Wood has said that even though the case involved the experience of just one client, the investigation raises “systemic issues” about the quality of care and respect for human rights.

The Maher Center has 16 licenses, according to the EOHHS spokeswoman. They cover: 

• 12 residential licenses (1 for each residential home)
• 1 agency license (the corporate “overall” license/oversight license)
• 2 center based day program licenses (for non-residential day programs)
• 1 service license (license that identifies all services that agency can provide)

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

Maher Center Disputes RI's Adverse Licensing Action In Formal Announcement of Appeal

By Gina Macris

The James L. Maher Center in Newport, RI., is “extremely disappointed” with “unsubstantiated conclusions” that it abandoned a young woman with developmental disabilities in its care at Newport Hospital last May, according to William Maraziti, the agency’s executive director.  

In a statement released Nov. 10, the agency says it has filed a formal appeal of an adverse licensing action taken by the RI Department of Behavioral Healthcare, Developmental Disabilities and Hospitals. 

After a four-month inquiry, BHDDH investigators recommended in September that the department’s “licensing unit issue a conditional license to the James L. Maher Center,” according to their September report. 

By early October, licensing officials had followed through, according to a spokeswoman for the Executive Office of Health and Human Services. 

At the time, Jennifer Wood, the Deputy Secretary for Health and Human Services said that even though the case involved the experience of just one client, the investigation raises “systemic issues” about the quality of care and respect for human rights.

The findings demonstrated that the Maher Center is “not reliably following the rules and regulations” of the Division of Developmental Disabilities, Wood said. She said a conditional license, good for six months, is the equivalent of a probationary license.

But the Maher Center says that the “flawed investigation resulted in the downgrading to ‘conditional status’ the state license on one of the Maher Center’s 11 group homes.” 

“Recent media reports wrongly implied that the action was taken against the Maher Center’s agency license, which is the Center’s authority to provide services as a developmental disability organization,” the statement said. 

“By availing itself of the appeal process, the Maher Center intends to remove this unjust blemish on its 63-year record,” the statement continued. 

“We have never abandoned any of our participants – and certainly didn’t in this circumstance,” Maraziti said, calling the investigators’ report “inflammatory” and its allegations “without merit.”   

A spokeswoman for Wood confirmed in October that the Maher Center had begun the appeal process. 

The first step in the process is a meeting with investigators to determine if differences can be resolved, and the next step is a request for a hearing before an EOHHS hearing officer, according to the spokeswoman. 

The agency’s statement offered no details about the formal appeal, and through a spokesman, Maher Center officials declined to answer questions.