Kerri Zanchi, RI Developmental Disabilities Chief, To Step Down At End Of March

This article has been updated.

By Gina Macris

Kerri Zanchi * Photos by Anne Peters

Kerri Zanchi, who for three years has led Rhode Island’s Division of Developmental Disabilities, announced March 5 that she will step down at the end of the month to pursue a different professional opportunity closer to her family in Massachusetts.

Zanchi, who came to the job early in 2017 with a passion for bringing equity to the lives of those facing intellectual challenges, has been given high marks for improving frayed relationships between the community and the bureaucracy of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

But she has faced mounting demands on her energies and time from two directions; federal civil rights agreements with increasingly exacting requirements for integrating adults with developmental disabilities in their communities, and an inherited funding mechanism that was originally designed for a segregated system of care.

In January, 2017, she was the first developmental disabilities professional in a decade to be selected to lead the Division of Developmental Disabilities. In the past three years, in response to companion federal civil rights agreements of 2013 and 2014, Zanchi has has expanded the professional staff of the division to put greater emphasis on supported employment services, gear up a quality improvement initiative and increase responsiveness to issues surrounding high school students moving into adult services.

Although BHDDH has won nearly $20 million more in the last few years for raising the wages of direct care workers in the private sector, the financial picture for the agencies that employ them remains tenuous, according to a recent consultants’ report.

In a March 5 letter to private service providers and others in the developmental disabilities community, Zanchi said she was stepping down “with mixed emotions.”

“With the interests of my family, I have decided to pursue an opportunity in Massachusetts with a continued focus and commitment to disability services,” said Zanchi, the mother of three school-aged boys.

“I remain tremendously appreciative of your consistent partnership, your support and your tenacity,” Zanchi said.

“It has been a rewarding experience for me personally and professionally and I will carry forward the values of the Rhode Island DD system,” she said.

Reached on Friday, March 6, Zanchi said she has been overwhelmed by the number of supportive calls and emails she has received from parents and others in the community during the first 24 hours after her announcement.

Zanchi, a family member of a Rhode Islander with a disability, said she has done her utmost to balance her role in changing the developmental disability service system with ensuring that she and her staff have been responsive to the needs to individuals and families on a daily basis.

Asked whether the demands of the job got to be too much for her at this point in her life, she said she has made it a point to answer every call from consumers and families and listen to the “good and not so good experiences of people. I wouldn’t change that,” Zanchi said, but “that does take a lot of time. The other demands are always still there.”

She said she would advise the future leadership to keep nurturing those personal relationships with the community. “You’ve got to stay close the work and you’ve got to be available to the people who rely on us,” she said.

Zanchi praised many collaborative efforts that have led to a number of changes, including expansion of supported employment services. Others that respond to the consent decree and to a gap in mental health services for adults with developmental disabilities include:

• The roll-out of an electronics record system, important for efficiency and for data collection and analysis in furthering the goals required by the 2014 civil rights consent decree

• A review of the rates and the funding model used to reimburse private service providers that is now underway

• Efforts to increase supported employment

• A new mental health initiative called Project START, which will focus on community-based crisis management for persons facing both intellectual and behavioral challenges.

Kevin Savage

Kevin Savage, Associate Director For Quality Management at BHDDH, will serve as interim director of the Division of Developmental Disabilities until a permanent replacement is selected.

No details about a search for a new director were immediately available.

Zanchi received her master’s degree in social work from Rhode Island College in 1999 but has worked most of her professional life in Massachusetts in the field of disabilities. Zanchi is a former Assistant Commissioner of the Massachusetts Rehabilitation Council, where she provided leadership and advocacy for six departments of state government focused on helping people with disabilities live in the community.

RI DD Legislative Commission Seeks To Change Payment Methods For DD Service Providers

By Gina Macris

Louis DiPalma * All Photos By Anne Peters

Rhode Island must find an alternative to the fee-for-service system used to reimburse private agencies that provide services to adults with developmental disabilities, a special legislative commission has concluded after more than a year’s study.

The 21-member panel chaired by State Sen. Louis DiPalma, D-Middletown, is finalizing more than a dozen recommendations, most of them aimed at changing key provisions of the payment system, known as Project Sustainability, which has been in place since 2011. Then, Rhode Island’s approach to serving adults with developmental disabilities relied heavily on sheltered workshops and day centers, an approach that figured in a civil rights investigation by the U.S. Department of Justice two years later.

Rhode Island no longer has sheltered workshops, thanks to a 2014 consent decree resulting from the DOJ investigation, which calls for enabling adults with developmental disabilities to become part of their communities in accordance with the U.S. Supreme Court’s Olmstead decision reaffirming the Integration Mandate of the Americans With Disabilities Act.

But the underlying regulations of Project Sustainability, coupled with inadequate funding, still hinder the best efforts of state officials, professionals and families to help adults with developmental disabilities engage in the activities they choose in their communities, according to testimony heard by the commission.

DiPalma presented the recommendations at a Jan. 14 meeting that concluded the work of the Project Sustainability Commission but set the stage for continued engagement by a smaller steering committee and subcommittees to advance the implementation of legislative and other changes.

The commission would replace fee-for-service reimbursement with “bundled” allocations for individuals that would give providers a set sum for each client over the course of a year, providing greater flexibility in individualizing programs. One recommendation would also simplify the billing process.

The current system guarantees funding for only three months at a time, with documentation of daytime activities required in 15-minute increments. By regulation, staffing ratios are linked to one of five levels of funding a particular person receives, not to the staffing required to support a person at any given time.

In this scenario, some residents of a group home may end up going along on a housemate’s outing, even though they have no interest in it. The commission recommends such ratios be eliminated to allow providers greater flexibility in assigning staff.

The commission’s recommendations cover some of the same ground as outside consultants who are in the midst of an 18-month study of the developmental disability system at the behest of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH). The consultants are supervised by the New England States Consortium Systems Organization (NESCSO), which is expected to conclude its work June30.

DiPalma’s expectation is that NESCSO will recommend a way forward for a new funding model to support individualization and integration in the community, with an emphasis on increasing employment opportunities for adults with developmental disabilities.

Kerri Zanchi (R) Speaks while A. Kathryn Power, NewBHDDH Director, Listens

Kerri Zanchi, a commission member and director of the Division of Developmental Disabilities at BHDDH, reminded DiPalma during the Jan. 14 meeting that NESCSO was hired to provide the department with options, not to make specific recommendations on ways it should restructure.

DiPalma said he appreciated Zanchi’s remarks, but “we’re here because of 2011,” the year the General Assembly enacted Project Sustainability, with a $26-million budget cut that ignored recommendations by outside consultants. The average pay for direct care workers still falls below the benchmark of $13.97, an hour recommended by the consultants in 2011.

“We’re still trying to claw our way out of that hole,” DiPalma said. He reiterated his view that NESCSO should be asked to make recommendations, not simply suggestions.

High on DiPalma’s priority list is a multi-year effort to address critical shortages of direct care workers by gradually increasing wages to make Rhode Island competitive with Massachusetts and Connecticut, one of the funding-related recommendations supported by the commission.

He encouraged commission members to continue their advocacy in a direct and respectful manner. “Do not take no for an answer on changes that are necessary,” DiPalma said. “Do not be combative,” he said, but open the door to collaboration and compromise by outlining the problem and asking for help in figuring it out.

The Commission’s funding-related recommendations said the budgeting process should be transparent. The developmental disabilities caseload should be part of the Caseload Estimating Conference held in conjunction with the Revenue Estimating Conference twice a year by the chief fiscal officers of the governor and the legislature to better inform budget preparations regarding the state’s social service obligations, the commission said.

In addition, the state should no longer use a disability-related assessment for calculating individual funding allocations according to a secret formula, or algorithm. Instead, the commission said, the assessment, called the Supports Intensity Scale, should be used for helping planners design programs of support for adults with developmental disabilities, the purpose for which it was designed by the American Association on Intellectual and Developmental Disabilities.

To eliminate inherent conflicts of interest between the state funding apparatus and service providers, individual service programs should be written by independent planners, the commission recommended. It did not favor a separate multi-million dollar social service case-management entity, called a “Health Home,” which BHDDH hopes to set into motion with Medicaid funding to satisfy federal conflict-of-interest regulations.

The commission also wants to bring to the table a barrier cross-section of public agencies to work on eliminating barriers to integration, like challenges in transportation and employment-related services. These agencies would include the Rhode Island Public Transit Authority and the state Department of Labor and Training (DLT), in addition to BHDDH and the Office of Rehabilitation Services, as service providers, families and consumers.

DiPalma said he would like to see BHDDH ask DLT to take the lead on employment services for adults with developmental disabilities.

Among other recommendations are these:

• BHDDH should establish crisis intervention capabilities that can respond to mental health emergencies in the community and prevent costly psychiatric hospitalizations

• The state should create a seamless transition for young people and their families from high school to adult services. The existing process has been compared to “falling off a cliff.”

DiPalma said the recommendations will be finalized in the coming week to incorporate comments made at the meeting. A steering committee, including himself and seven other commission members, will remain active, setting into motion small working groups to address legislative and other issues and reconvening every three months to review progress.

He asked the commission members “to do one thing: hold yourself and each of us accountable to stay on track” on behalf of the 3,835 people who currently receive developmental disability services.

RI Faces Uphill Climb Halfway Through DD Consent Decree Implementation

Bar graph from RI’s latest report to federal court monitor indicates RI is on track to meet one of three categories of employment targets in 2019. “Youth Exit” refers to those those who left high school between 2013 and 2016. “Sheltered Workshop” and “Day Program” refer to persons who spent most of their time in those respective settings when the consent decree was signed.

By Gina Macris

Halfway through Rhode Island’s decade-long agreement with the federal government to ensure that adults with developmental disabilities can work and enjoy leisure time in the larger community:

• Rhode Island has linked 38 percent of its intellectually challenged residents to acceptable jobs, prompting a federal monitor to warn that it needs to step up its game

• Service providers argue that continued progress will take a larger financial investment than the state is making

• Success stories abound but some families remain skeptical about whether the changes will ever work for their relatives.

Five years and three months after Rhode Island signed a federal consent decree to help adults with developmental disabilities get regular jobs and lead regular lives in their communities, 857 people have found employment. Yet, 1,398 others are still waiting for the right job match or for the services they need to prepare for work.

The pace of adding individuals to the employed category has slowed dramatically. Only 37 individuals were matched with jobs during the first two quarters of the current year. To meet its overall employment target for 2019, the state will have to find suitable job placements for 199 more adults. That would require a pace in the second half of the year that is five times faster than the first half.

Though the federal consent decree was signed in 2014, meaningful efforts to comply with its terms did not get underway until two years later, when a federal judge threatened to hold Rhode Island in contempt and levy fines if it did not take numerous and precise steps to begin compliance in a systematic way. At that point, state officials were struggling even to come up with an accurate count of the number of individuals protected by the consent decree, so inadequate was its data collection.

The active census of the consent decree population has grown since 2016, when the judge ordered the state to improve its record-keeping and the monitor forced the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) and the Rhode Island Department of Education (RIDE) to look again at special education students who might be eligible for adult services.

The most recent figures show that there are 3,764 intellectually challenged adults active either with BHDDH or RIDE who covered by the consent decree.

Of that total, 211 were employed in the community prior to the consent decree. Some have signaled they don’t want to work, either because they are of retirement age or for other reasons. Nearly 1,200 others are still in school and not yet seeking jobs.

Of the 2,255 adults who must be offered employment over the life of the consent decree, 38 percent have landed jobs.

The figures are re-calculated every three months.

Employment data from the state’s report to the consent decree monitor as of June 30, 2019. broken down by categories of persons who must be offered jobs. “Youth exit” refers to those those who left high school between 2013 and 2016. “Sheltered Workshop” and “Day Program” refer to persons who spent most of their time in those respective settings when the consent decree was signed.

Rhode Island agreed to overhaul its services for the developmentally disabled population after an investigation by the U.S. Department of Justice found the state’s over-reliance on segregated sheltered workshops and day care centers violated the integration mandate of the Americans With Disabilities Act.

People with disabilities have the civil right to the supports and services they need to live as part of their communities to the extent that it is therapeutically appropriate, the U.S. Supreme Court said in the Olmstead decision of 1999, which upheld the integration mandate. In other words, integration should be the norm, not the exception.

Some people couldn’t wait to get out of sheltered workshops when the consent decree was signed and quickly found jobs in the community with a little bit of assistance. But some families with sons and daughters who have more complex needs saw sheltered workshops close without any transition plan. For some of them, the consent decree continues to represent a sense of loss.

At a recent public forum, Kerri Zanchi, director of the Division of Developmental Disabilities (DDD), and Brian Gosselin, the state’s consent decree coordinator, had just finished applauding the successes of those who have found jobs or are on their way to shaping their careers, when Trudy Chartier spoke up on behalf of her daughter.

Trudy Chartier * all photos by Anne Peters

Her daughter is 55, deaf, has intellectual and behavioral problems and uses a wheelchair, Chartier said. She wants a job in the community and she’s been looking for five years.

Her daughter was in a sheltered workshop for a while, Chartier said, and “she loved it.”

“She didn’t care about making $2 an hour,” her mother said, and she made friends there. Now, she said her daughter “is not getting anywhere” and is “so dissatisfied.”

At the age of 80, Chartier said, she doesn’t have the energy she once had to help her daughter change things.

Later, Douglas Porch sounded a similar concern. “I can understand that the idea is to get them into the community, but what it’s actually done is destroyed my daughter’s community, because you’ve taken away her friends.”

“She’s in a group home, with nothing for her to do,” Porch said.

Zanchi, the DDD director, said that the consent decree certainly has changed the way people receive services. The intent is “not to isolate, but the opposite, to build communities,” she said.

“If that’s not working and it sounds like it’s not, we need to hear about that,” Zanchi said. “We can help you so that she can engage with her peers more effectively.”

Another parent, Greg Mroczek, also spoke up. “In terms of all the possible models, isn’t a sheltered workshop for a segment of the DD population the best possible model? Isn’t that what people are saying? It worked for my daughter as well,” he said, and nothing has replaced it.

Kerri Zanchi

He asked whether the sheltered workshop is “off the table” in “any way, shape or form” in Rhode Island.

Zanchi talked about the state’s Employment First policy, which values full integration and“investing in the skills and talent of every person we support.”

“We know that individuals of all abilities have had successful employment outcomes. We also know that employment is not necessarily what everybody wants,” Zanchi said.

“Striking that balance is a challenge,” she said. The state’s developmental disability service system and and its partners are working hard to help meet people’s needs, Zanchi said.

Rebecca Boss

When Zanchi was hired at the start of 2017, she was the first professional in developmental disability services to run the Division of Developmental Disabilities in about a decade.

Zanchi and Rebecca Boss, the BHDDH director, have improved the bureaucratic infrastructure to foster employment, professional development, quality control, and communications with families and consumers and the private agencies the department relies on to deliver services that will meet the monitor’s standards.

For example, the developmental disabilities staff has been expanded and reorganized. An electronic data management system has been introduced. BHDDH invited providers and representatives of the community to the table to overhaul regulations governing the operations of the service providers and has maintained a quality assurance advisory council, with community representation.

Broadly speaking, the leadership of Boss and Zanchi has set the tone for a philosophical shift in which employment is part of a long-range campaign to open the door to self-determination for adults with developmental disabilities – in keeping with the mandates of the consent decree. The state’s last sheltered workshop closed in 2018.

The consent decree also has fostered a revival of advocacy in the community and the legislature, where there had been a vacuum once an older generation of leaders had passed on.

So why isn’t the glass half full at the halfway point in the decade-long life of the consent decree? In a word, money.

Advocates say a central issue is the lack of an investment in the ability of the system to reach more people with the array of services that will open doors and enable them to find their places in the community.

To satisfy the requirements of the consent decree, the state relies on the efforts of private agencies that provide the actual direct services.

The federal monitor in the consent decree case, Charles Moseley, has asked the state to get to the bottom of what he described as a lack of “capacity” on the part of these private agencies to take on new clients.

BHDDH is circling around the funding issue with an outside review of the fee-for-service rate structure governing developmental disability services. That analysis is designed to expand the analytical capabilities BHDDH, leaving the policy decisions to the department leadership.

Advocates for adults with developmental disabilities, most prominently state Senator Louis DiPalma, D-Middletown, say there must be a public discussion about how much money it will take in the long run to complete the transformation from sheltered workshops and day care centers into one that assists people in finding their way in life. DiPalma chairs a special legislative commission studying the current fee-for-service system.

In the meantime, DDD is soliciting a proposal for the third iteration of its performance-based supported employment program, which is designed to focus on people who have never held a job. This group includes young people completing high school and seeking adult services for the first time, as well as adults who face multiple challenges and would find it difficult to fill the standard job descriptions put out by employers.

The new Person-Centered Supported Employment Performance Program (PCSEPP 3.0) is expected to launch Jan.1 with an emphasis on “customized” employment, tailored to match an individual’s strengths and interests with the needs of an employer who is willing to carve up the work at hand in a non-traditional way.

The concept of customization is not new.

In Rhode Island, a few adults with developmental disabilities have had customized employment for many years, most often arranged with the support of their families, who hire staff and direct a unique array of services for them rather than relying on an agency.

In addition, the Rhode Island Council on Developmental Disabilities promotes self-employment, a form of customization, through a business incubator created with the help of the Real Pathways RI Project sponsored by the Governor’s Workforce Board.

The DD Council highlights the products and services of self-employed adults with developmental disabilities as part of its annual holiday shopping event, Small Business Saturday Shop RI, scheduled this year for Nov. 30 at the Crowne Plaza Hotel in Warwick.

The U.S. Department of Labor defines customized employment as a “flexible process designed to personalize the employment relationship between a job candidate and an employer in a way that meets the needs of both. It is based on an individualized determination of the strengths, needs, and interests of the person with a disability, and is also designed to meet the specific needs of the employer.”

Since the supported employment program started in 2017, providers have expressed concerns that, because it is tied to the fee-for-service reimbursement system, it does pay for initial investments the agencies might have to make to participate.

Those concerns persisted during a meeting between DDD officials and potential applicants for the customized employment program in mid July. At the providers’ request, DDD has extended the application deadline to October 4.

Womazetta Jones

The state’s new Secretary of Health and Human Services, Womazetta Jones, has promised to be a careful listener to the concerns of the developmental disability community.

Speaking at the recent public forum, after just eight days on the job, Jones acknowledged the state’s efforts to improve services for adults with developmental disabilities but also cautioned against complacency.

Even though the state has substantially increased funding for developmental disabilities in recent years and gained “stable and effective leadership” at BHDDH, “that doesn’t mean anyone in this room or state government is content with recent progress,” she said.

“The moment we think we don’t have more to do, is the moment we have lost our way,” Jones said, signaling that she is available for further discussion of issues affecting people with developmental disabilities.

RI DD Direct Care Raises To Kick In Oct. 1

By Gina Macris

Direct care workers employed by private agencies serving persons with developmental disabilities in Rhode Island will have to wait until October to receive raises provided in the state budget that took effect last month.

But when the raises do show up in their paychecks, they’ll be for the full amount – 80 to 85 cents an hour, according to state officials.

A spokesman for Nicholas A. Mattiello, speaker of the House of Representatives, had suggested that raises proposed by Governor Gina Raimondo in her budget plan, and enacted by the legislature, might take effect July 1.

An additional pay boost added in the waning days of the General Assembly session would follow on Oct. 1, the speaker’s aide had said.

But state officials now say that both raises will take effect Oct. 1, allowing time for the state to work with the federal government to make technical changes required in the Medicaid program to incorporate the wage increases.

Direct care workers employed by developmental disability service organizations will receive an estimated 80 to 85-cent hourly pay raise effective Oct. 1, according to state officials.

The General Assembly set aside a total of $9.5 million in federal and state Medicaid funds - including $4.5 million from the state budget- for raises to direct care workers. That total consists of $6.2 million proposed by Governor Gina Raimondo in her original budget plan and an additional $3.3 million added by the House in the waning days of the 2019 session of the General Assembly.

At that time, Mattiello’s spokesman said that the pay increase proposed by the Governor would become effective July 1 and the amount added by the House would kick in Oct. 1.

But the final budget language does not specify an effective date.

In a recent public forum, Kerri Zanchi, director of the Division of Developmental Disabilities, said that because the pay raise involves federal Medicaid funds, the state must work with the Centers for Medicare and Medicaid Services to make changes to the federally-authorized reimbursement rate the state pays to privately-run service providers for front-line staff.

Unlike previous pay increases enacted by the legislature, the $9.5 million investment in direct care wages will not extend to supervisors, job coaches and other specialists working with adults with developmental disabilities, state officials have said.

Raising the pay of direct care workers is considered a critical issue in employers’ ability to recruit and retain staff at a time when the state relies on some three dozen privately-run agencies to implement the requirements of a 2014 federal civil rights consent decree. Drawing its authority from the 1999 Olmstead decision of the U.S. Supreme Court, the consent decree requires the state to change to an integrated, community-based model of daytime services by 2024, with an emphasis on employment.

According to a budget analysis by the House Fiscal Office, this year’s raises will boost the pay of direct care workers to about $13.00 an hour. But the state and private providers historically have differed on how far raises will go, because the state allows much less for employee benefits and other employment-related overhead than providers say those expenses actually cost.

A trade association of two thirds of private providers in the state says that on average, entry-level employee make about $11.44 an hour, while more experienced direct care workers make an average of about $12.50 an hour. The Connecticut legislature enacted a minimum wage of $14.75 for developmental disability and personal care workers in 2018. Massachusetts pays $15 an hour for personal care workers, a category which includes many who support adults with developmental disabilities.

NESCSO Will Not Offer “Magic Number” on RI DD Rate Review, Leaving Decisions To BHDDH

Rick Jacobsen *** All Photos By Anne Peters

By Gina Macris

A consultant to a regional consortium reviewing Rhode Island’s developmental disability service system outlined the scope of the group’s work and time line to a July 30 meeting of a special legislative commission.

The consultant also disclosed some preliminary findings about “Project Sustainability,” the fee-for-service reimbursement system also being studied by the General Assembly’s commission. No one appeared surprised by the early findings.

For example, the developmental disabilities caseload has had a compounded annual growth rate of 3 percent in the last five years, from 3,744 to a current total of 4,297.

And the data shows that the private agencies that provide most of the direct services – and bear the brunt of the work necessary to comply with a federal civil rights agreement - operate on precarious financial margins.

The presentation to the Project Sustainability Commission was made by consultant Rick Jacobsen and his boss, Elena Nicolella, executive director of the New England States Consortium Systems Organization (NESCSO), a non-profit group that provides analysis in the fields of health and human services to five states. The meeting was held at the Arnold Conference Center at the Eleanor Slater Hospital.

Nicolella and Jacobsen encountered pushback when they explained the role defined for NESCSO by the state Department Behavioral Healthcare, Developmental Disabilities and Hospitals.(BHDDH).

NESCSO will present options to BHDDH for system improvements toward the project goal of maximizing “opportunities for people to fully participate in their community,” according to a Powerpoint presentation that accompanied the talk. But it won’t deliver an independent recommendation or “magic number” on costs, Jacobsen and Nicolella said.

Tom Kane, CEO of AccessPoint RI, a private provider, said long experience in system-wide reform has taught him that the approach chosen by BHDDH is doomed to fail unless the effort also states the true cost of evolving to an integrated community-based model.

L. to R.: Andrew McQuaide, Kim Einloth, Tom Kane

There has been no “tolerance” for even “having a (public) discussion about the cost of investing in the change process,” said Kane. “If you shift funds in an underfunded system, it’s not going to work. It’s just going to make the hole deeper,” he said.

In the 1980s and 1990s, when advocates pushed to close the Ladd School, the state’s only institution for people with developmental disabilities, “there was a community behind us, and we put an investment in the system in order to make that change happen, and it was dramatic change,” Kane said.

But there was no investment in changing the system in Project Sustainability, enacted in 2011, Kane said.

While the healthcare consultants Burns & Associates recommended an investment that was millions of dollars more than was being spent, Kane said, that number was never made public or discussed in the General Assembly. “What we ended up with was millions of dollars cut,” he said.

A few years later, when the demand grew for more community-based services, those reimbursement rates increased, but rates for center-based care decreased, despite the fact that providers continued to have the same fixed costs, Kane said.

The history of Project Sustainability has prompted a certain amount of “agida” among service providers regarding NESCSO’s work, said Andrew McQuaide, a Commission member.

“Having gone through a similar process and getting an end product that turned the system around and took us backward,”he said, providers are nervous that “we could go through a very similar process and come up with a poor product.”

He said his remarks did not reflect in any way on the current administration. Rebecca Boss, the BHDDH director, and Kerri Zanchi, the director of the Division of Developmental Disabilities, are both commission members and attended the meeting.

McQuaide and A. Anthony Antosh, another commission member, both urged Boss to make public all the data and reports produced by NESCSO, whose contract runs through June, 2020.

Antosh said there ought to be a direct relationship between the goals of the rate review and the recommendations of the commission. Commission members have submitted individual recommendations, which all advocate for the self-determination of adults with developmental disabilities. Their work will be synthesized into a final report, according to the commission chairman, Sen. Louis DiPalma, D-Middletown.

The manner in which NESCSO’s work will be shared with the public is under discussion, Boss said. She and Zanchi said they didn’t think it would be the best use of everyone’s time if the public discussion got bogged down in the minutia of the analytics at each stage in the process.

“We don’t want to be pulled off course but be mindful of the project as a whole,” Zanchi said.

Jacobsen and Nicolella said that NESCSO intends to produce data to enable BHDDH to make both near-term changes and longer-term reforms.

Preliminarily analysis of the audited financial statements of 16 private provider organizations confirms that the system is operating on a very close financial margin, said Jacobsen.

Elena Nicolella

That’s not unusual, he said. Human services agencies across the country are in similar positions. At the same time, the tight finances mean the agencies may tend to be averse to risks like investing in system change or taking on new clients, Jacobsen said.

Jacobsen presented a preliminary analysis of audited financial statements from 16 provider agencies over the last two years, with tables organized according to the number of fiscal reports. The agencies were not identified.

For example, out of a total of 27 audited financial statements, 15 showed deficits and 11 showed surpluses. Of the 11 surpluses, 6 were less than 3 percent of revenues.

In another table summarizing 24 financial statements, 12 of them showed less than a month’s cash on hand at the end of the fiscal year.

And a third table on liquidity said that of a total 24 financial statements, only 4 had working capital to carry their agencies longer than 2 months. At the other extreme, 7 statements said their agencies had no working capital or were lacking up to two months’ worth at the end of the fiscal year.

Jaccobsen said the state has made advance payments to some struggling agencies, but these advances have been carried as liabilities on the books.

Commission members said that for some organizations with multiple sources of income, the agency-wide audited statements do not give an accurate picture of the fiscal margins in developmental disabilities.

Regina Hayes, CEO of Spurwink RI, and Peter Quattromani, CEO of United Cerebral Palsy, suggested that the financial picture is worse than it looked in Jacobsen’s tables and asked him to go back and look only at the income and expenses related to developmental disabilities.

Jacobsen said NESCSO will spend the entire month of August listening to providers. Engagement with consumers and their families is scheduled for September.

An analysis of earnings figures from the Bureau of Labor Statistics for May, 2018 indicated that the wages for direct care workers in Rhode Island are close to the median in comparison to other states. That doesn’t mean that agencies can hire and retain employees, Jacobsen said.

Here too, Jacobsen was asked to look more closely at the figures.

Louis DiPalma and Rebecca Boss

The commission chairman, DiPalma, said the figures Jacobsen used didn’t account for a raise the Connecticut legislature gave to all its developmental disability direct care workers to a minimum of $14.75. In Massachusetts, 30,000 people working as personal care attendants, including many working with adults with developmental disabilities, make $15 an hour, DiPalma said. And the figures Rhode Island reports to the Bureau of Labor Statistics put developmental disability workers in the same category as home health aides, who make more, DiPalma said. According to a trade association representing two thirds of private providers in Rhode Island, entry-level direct care workers make an average of $11.44 an hour. (They are soon to get raises.)

When Jacobsen mentioned that NESCSO plans to compare Rhode Island’s developmental disability services to those in other states, Kane, the AccessPoint CEO, said the consultants must make sure to include the amounts the other states spend on institutional care.

A comparison of community-based services among states does not yield a true picture of total state spending on developmental disabilities, since most other states also have institutions, Kane said. But Rhode Islanders who in other states would be institutionalized live in the community in Rhode Island instead, said Kane.

Jacobsen also presented other preliminary statistics:

• There has been a 15 percent compounded increase in the number of people who direct their own programs in the last five years. NECSCO will look further at whether the increase has occurred by choice or whether it results from individuals and families being unable to find suitable services from agencies. “I suspect it’s a mix of both,” Jacobsen said.

• Of a total of nearly $216.2 million in reimbursement claims paid by the state in the 2018 fiscal year, 51.4 percent was for residential expenses and 48.6 percent was for daytime services, case management, respite care, and independent living or family supports.

· In the category of daytime services, 4.2 percent, or nearly $4.5 million, was spent for employment-related and pre-vocational activities. Increasing employment is one of the main goals of the consent decree.

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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

Staffing Ratios Hinder Needed Flexibility

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

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

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

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

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

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

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

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

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

Study Commission To Hear from NESCSO

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

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

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

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

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

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

Paradox In Unspent Funds For Employment

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

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

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

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

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

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

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

Consumers Want More Control Over Money Assigned To Them

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

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

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

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

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

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

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

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

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

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

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

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

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

The headline claims this system “promotes segregated care.”

This assertion is false.

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

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

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

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

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

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

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

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

Jane Sroka * all photos by anne peters

By Gina Macris

Access. Quality. Safety.

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

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

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

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

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

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

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

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

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

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

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

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

Rebecca Beaton

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

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

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

Kerri Zanchi

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

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

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

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

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

FROM OLMSTEAD TO HEALTH HOMES

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

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

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

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

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

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

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

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

NEW WORKPLACE LAW AFFECTING SOME DD SERVICES

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

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

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

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

RATE REVIEW GEARING UP

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

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

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

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

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

NEW YOUTH AND TRANSITION ADMINISTRATOR

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

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

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

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

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

'Our Lives Turned Upside Down' When Daughter Entered RI Adult DD System, Mother Says

Louis DiPalma, Rebecca Boss, and Kerri Zanchi watch A. Anthony Antosh of Rhode Island College present consumer and family perspectives on the state’s services for adults with developmental disabilities Photo by Anne Peters

By Gina Macris

A Rhode Island Senate study commission spent nearly two hours Dec. 12 laying out a catalog of strengths and weaknesses in Rhode Island’s system for helping people with developmental disabilities.

But in the end, the personal stories of two mothers, Amy Kelly of Smithfield and Martha Costa of Portsmouth, focused the commission’s attention on the crises now unfolding for at least several families who are at their wits end.

In the catalogue, their experiences come under “residential services-need for specialized medical/behavioral residential models.”

For Amy Kelly, that means that every single service provider in Rhode Island – about three dozen - has turned away her 21 year-old daughter, who is autistic, has behavioral problems, and functions in many ways as a kindergartener.

“So now what do I do?” Kelly asked in a letter to the commission chairman, Sen. Louis DiPalma, D-Middletown. Kelly is a widow, and works fulltime. Her daughter, Kayla, was asked to leave the Trudeau Center in Warwick because of injuries to staff.

For a month now, Kayla has been at home all the time and her problematic behaviors have intensified, Kelly wrote. “She is out of her routine, asking for “friends,” “yellow bus,” “trip,” and other favorite things and experiences that she misses..

Kelly has been forced to choose “self-directed” services, meaning that she must find her own workers,“which is pretty much impossible,” she wrote to DiPalma.

And the Home Based Therapeutic Services that helped Kayla outside of school hours while she was still in special education are no longer available.

“I cannot believe there are no programs in RI for families in this situation!” Kelly wrote. “When my daughter turned 21 in May everything in our lives turned upside down.”

Martha Costa * courtesy of Capitol TV

Martha Costa agreed. She attended the Commission hearing at the State House on behalf of her own family and five others in Portsmouth who have become friends as their children have faced behavioral challenges growing up and have aged out of the school system into purview of the state Division of Developmental Disabilities (DDD).

As the mother of a 22 year-old man on the autism spectrum, she said her experience has been that once young people with complex needs turn 21, “there is really no place for them to go.”

The family might be told to go to a hospital, but with the exception of Butler Hospital in Providence, a mental health facility, “the hospital is horrible, because it’s just more trauma going there.”

The 21 year-old daughter of a friend of Costa’s had meltowns after her mother – her primary caregiver and the one who organized her services - died in September. The woman’s daughter, who has multiple disabilities, was hospitalized because there was “nowhere for her to go,” Costa said. The young woman was “restrained, medically and physically. It’s heartbreaking,” Costa said.

“It’s lucky you have good parents who are helping these kids, but you know, we’re all getting older and we’re not going to be able to,” she said. The aging of parents, who are often primary care givers, is a broad concern among families, according to survey results.

“There are some kids who don’t have that parent support and they’re on the street,” Costa said. “That’s sad, when they can be a very productive part of our community.”

Kerri Zanchi, the state’s Director of Developmental Disabilities, thanked Costa for coming forward.

One of the biggest challenges in residential services, Zanchi said, is a dearth of specialized homes for individuals with behavioral and other complex needs, as well as a lack of therapists and other clinicians to give them the proper attention.

“There’s a huge need coming” as teenagers with complex disabilities leave schools, she said. “We need to know what that need is and we need to start working on it lot earlier than when they turn 21 and come into our system.”

Zanchi referred to the division’s Eligibility by 17 policy, which aims to give families, schools, and the adult system plenty of time to plan a smooth transition.

In the catalogue, one of the “challenges” the state officials listed in implementing the Eligibility by 17 policy is “resource and service difference for transitioning youth vs adult services.” In the summary that family and consumer representatives submitted, they commented that “transition from high school is a ‘nightmare.“

Zanchi continued her response to Costa. “We certainly recognize every day the crises we have to manage” in order to support the individuals involved and to try to grow the system’s capacity, she said.

And there are committed providers who are willing to help the state, but who also want to do that with the right staffing that will keep all individuals safe, Zanchi said. “We are all hands on deck. I know it probably doesn’t feel like enough,” she said.

Costa agreed. “ I understand what you’ve been doing and I know that everyone has been working hard . Still, it’s not enough,” she said.

Gloria Quinn, executive director of West Bay Residential Services, said her agency works very well with the state as a partner in exceptional situations, but it is extremely difficult as long as there there is a paucity of established expertise in the community that is accessible to the developmental disabilities providers.

“Very often we are creating something new, which takes an enormous amount of time,” Quinn said, and the funding is not enough. Most importantly, when the agency helps someone with increased needs it runs the risk of jeopardizing supports for other people, particularly in a residential setting, she said.

Peter Quattromani, President and CEO of United Cerebral Palsy Rhode Island, pointed to the low wages for direct care staff that frustrate all involved; those who love the work but can’t pay the bills, employers who can’t fill jobs, and consumers and families who can’t find suitable services.

“It’s an incredibly difficult job” , he said, and attracting staff is likewise very difficult, given the low wages.

Commission member Kelly Donovan, who herself receives services from DDD, had sparked the conversation by wondering aloud why those with serious behavioral problems have difficulty finding appropriate support.

She said she agreed with Quattromani and Costa, and she added another factor that she believes contributes to the problem: a societal stigma against those with a broad range of mental illnesses who exhibit aggressive behavior.

During the last month, commission members, representing the executive branch of government, private providers, and consumers and their families, were asked to complete a survey cataloging the strengths and weaknesses of the existing Medicaid fee-for-service system, called Project Sustainability.

The commission plans to use the results of the survey, named the “Current State Assessment,” to seek advice from outside experts and further the group’s deliberations in the future, according to a statement issued at DiPalma’s behest.

Directly or indirectly, a lack of adequate funding in various contexts permeated three summaries of the survey results, each one presented by a representative of each of the three segments of the commission. Transportation, for example, has become a bigger problem now that there is a greater emphasis on community-based services, which require more than the two daily trips usually allowed by individual funding authorizations. Families also cited difficulties of non-English speakers in getting information and services.

But Rebecca Boss, director of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, also said the developmental disabilities budget has increased significantly since 2015, and listed advances made in the last two years, including:

• $6.8 million for supported employment

• two annual wage increases for direct care workers (The average hourly pay for front-line workers is $11.36 an hour)

• the acquisition of a modern data management system

• an increase in staff for quality management, implementation of a federal civil rights consent decree and for Medicaid-mandated Home and Community Based Services, as well as assistance in maximizing the existing budget.

She described the funding needs of the system as “dynamic.”

“We are engaging in discussions with our partners about what those needs are,” Boss said. “Governor (Gina) Raimondo has demonstrated a willingness to look at the system and make adjustments in the budget as we go along. So this is the process that we’re currently working on and engaging in those conversations on a regular basis.”

Raimondo is to present adjustments for the current budget, as well as her proposal for the next fiscal cycle, during the third week of January.

Christopher Semonelli, a commission member and the father of a teenager with complex needs, commented on the origins of Project Sustainability, which seemed to him like system “in a death spiral, and there was basically a feeding frenzy as to how to continue the system; how to go after the available funds.”

“I don’t think the legislative base should be blamed” for cutbacks that launched Project Sustainability in 2011, “because there was a lack of advocacy, “he said. “Strong advocacy could have prevented that from happening. That is huge and needs to be built going forward.”

DiPalma had the last word. Semonelli “made a great point about advocacy, but he shouldn’t let the General Assembly off the hook,” DiPalma said. “This is where the buck stops.”

Read the summaries presented at the meeting. For the state’s assessment, click here. For consumer and advocates’ comments, click here. For service providers’ comments, click here.

RI Project Sustainability's Plan For Enhanced DD Services Was "Cover" For Budget Cuts - Testimony

By Gina Macris

Louis DiPalma, Chairman of Project Sustainability Commission Photo By Anne PETERS

Project Sustainability, introduced in Rhode Island in 2011 as a method for enhancing individualized services for adults with developmental disabilities, instead has diminished the quality of their lives.

That assessment set the stage Oct. 9 for deliberations of a Senate-sponsored commission charged with studying Rhode Island’s past and present system of developmental disability services, with the aim of designing a better future.

At the same time, the chairman of the 19-member panel, Sen. Louis DiPalma, D-Middletown, emphasized that the purpose of the commission is not to assign blame but to learn from the past and present to figure out how to best move forward. The commission must report to the Senate by March 1.

Project Sustainability was “a well-manicured statement to cover up” cuts in funding and services, said Tom Kane, CEO of AccessPoint RI, one of three dozen private agencies serving adults with developmental disabilities in Rhode Island.

Kim Einloth Testifies

Project Sustainability had a “major impact on the quality of service we were able to deliver,” said Kim Einloth, a senior director at Perspectives Corporation, one of Rhode Island’s largest service providers. She said the community-based program of day services was forced to put people in large groups, lay off specialists like occupational and speech therapists and discontinue consulting services with physical therapists.

Gloria Quinn, executive director of West Bay Residential Services, said she noticed immediately that the disabilities system was “demoralized, decreased and degraded” when she returned to Rhode Island after a nine-year absence in 2013. When Quinn moved out of state in 2004, she said, Rhode Island was one of the top-ranked states nationwide for its programs for adults with developmental disabilities. Quinn sits on the commission.

In a meeting that lasted about 90 minutes, the commission covered a broad range of topics related to Project Sustainability and the controversies linked to it: inadequate overall funding, depressed worker wages, and an assessment used – or misused - to determine individual allocations for services.

The planning and execution of Project Sustainability has been well documented, primarily by Burns & Associates, healthcare consultants hired by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) in 2010.

DiPalma said that from what he’s seen, Burns & Associates was “charged with providing a plan, and the state chose to do something different.”

Rebecca Boss, the current director of BHDDH, reviewed the history of Project Sustainability, designed to bring uniformity to funding for specific services and enable families to make informed choices about services. Project Sustainability aimed to use data gathered through new funding methods to create incentives for services to be delivered in the most integrated setting possible, she said.

“Change is hard, and even with perfect planning, it would not result in everyone’s needs being met,” Boss said.

“I think everyone knows” that the current administration – including Governor Gina Raimondo, Kerri Zanchi, the Director of Developmental Disabilities, herself, “is committed to working with our stakeholders” to figure out “where do we go from here,” said Boss.

“Many may have different views of history, as is often the case,” said Boss, a commission member.

Kane, of AccessPoint, said he didn’t want his anger about Project Sustainability to reflect the way he regards the current administration. The working relationship service providers now have with the BHDDH administration, he said, is “better than we’ve had in a very, very long time.”

Tom Kane Chats After The Commission Meeting

The plans for Project Sustainability “talked about individualizing services and moving toward person-centeredness and all of the lovely buzz words,” said Kane, but the rhetoric really described “a system we already had that got dismantled.”

While Project Sustainability talked about individualization, inclusion and community support, the regulations governing developmental disability services “were always about center-based group activity.”

“Finally, under this administration, the regulations have been put forward that will put back the flexibility we need,” Kane said. The new regulations have passed a public comment period and are to be finalized by the end of the year.

Funding, however, has a long way to go to support the kinds of changes providers, families, and consumers want, by all accounts.

Commission member Andrew McQuaide zeroed in on historical funding of developmental disability services.

McQuaide said that developmental disability spending had been on a downward trend in Rhode Island since 1993.That was the year before the last residents left the Ladd School, the state’s only institution for those with intellectual challenges.

Citing According to Burns & Associates, McQuaide said:

• Between 1993 and 2008, Rhode Island’s expenditures for developmental disabilities decreased by 29.5 percent at the same time the national rate increased by 17.8 percent.

• Rhode Island is only one of 14 states to report a reduction between 2007 and 2009 in per-person expenditure, a decrease of 4 percent at the same time the national trend registered a 5.6 percent increase.

McQuaide also said that anecdotal information indicates about half the state’s private providers were reporting operating deficits in 2009, ill-preparing them to absorb the additional funding cuts that came along with Project Sustainability.

An overview prepared by the Senate Fiscal Office showed that actual spending on developmental disabilities, including both state and federal Medicaid funds, dropped $26.2 million in the fiscal year that began July 1, 2011 when compared to spending during the previous 12 months.

The overview shows that, adjusted for inflation, the current budget still has not caught up to the spending reach of the developmental disability system in the year before Project Sustainability was enacted.

Chart courtesy of RI SENATE FISCAL OFFICE

Prior to Project Sustainability, private agencies negotiated an annual sum for each individual in their care.

The new system generated standard reimbursement rates for each of 18 different services that agencies were authorized to provide.

Kane noted that from the outset, the funding for Project Sustainability was not designed to cover all of the actual costs of private providers, almost all of whom had submitted extensive financial data to the state.

A BHDDH memo for rate-setting that the department sent to the General Assembly noted that the reimbursement rates eventually adopted for Project Sustainability were 17 to 19 percent below “benchmark rates” which Burns & Associates calculated from the median wage for direct care jobs - $13.97 an hour.

The state could not afford more, the memo said, citing the poor economy at the time.

The memo said the lower reimbursement rates were calculated by reducing the allowances for fringe benefits for workers and in some cases, cutting transportation and program expenses.

Kane, who is familiar with the rates in the memo and other Burns & Associates documents, said providers were “actually told in a meeting, ’We’ll see what this (the benchmark wage) costs but we won’t actually bring this to the legislature because they’ll laugh at us.’

“I don’t understand why the expenditure of well over a million dollars on Burns & Associates wasn’t taken seriously enough” to put forward actual expenditures “and let the legislature decide whether it was appropriate,” Kane said.

McQuaide, meanwhile, quoted from the memo. “We did not reduce our assumptions for the level of staffing hours required to serve individuals. In other words, we are forcing the providers to stretch their dollars without compromising the level of services to individuals,” the memo said. See related article

McQuaide said the experience of the last seven years has shown that it was a “fiction” to think the system of private providers would be forced to implement Project Sustainability without compromising services.

The state has a separate system of group homes for adults with developmental disabilities which has not been subject to rules or the pay cuts that came with Project Sustainability. Instead, the workers are unionized state employees with full benefits.

Donna Martin and Andrew McQuaide

In the privately-run system, McQuaide said, the wages paid direct care workers still don’t reach the original $13.97 per hour “benchmark”, or median-pay rate, calculated by Burns & Associates.

The most recent data available indicates that the average entry wage for direct care workers is $11.37 an hour. It comes from a survey of member agencies of the Community Provider Network of Rhode Island (CPNRI) conducted last February, according to Donna Martin, executive director of the trade association, which represents about two thirds of service providers in Rhode Island. Martin said she is in the process of updating the figure.

Martin, a commission member, told the panel that CPNRI has met with the BHDDH leadership and representatives of Governor Raimondo’s office and the Office of Management and Budget to review current provider reimbursements in comparison to an extensive menu of rates envisioned by Burns & Associates in planning Project Sustainability. BHDDH, OMB, and the Governor have already planning a budget proposal for the next fiscal year.

DiPalma said Burns & Associates originally wanted to advance a “competitive” average wage of $15.46 an hour.

Addressing wage inequities will be a critical focus of the commission’s work, he said. Two years ago, DiPalma started a campaign to raise direct care wages to $15 an hour over five budget cycles. Massachusetts already pays its direct care workers a $15 hourly rate, and many Rhode Islanders find they don’t have to move to take advantage of these higher-paying positions at agencies that are an easy commute from their homes, DiPalma said.

Another source of rancor over the last several years has been the assessment used to determine individual funding levels under the terms of Project Sustainability – the Supports Intensity Scale (SIS), which was updated in November, 2016.

Kane has said data compiled by Burns & Associates indicate the original version of the SIS was used to cut individual funding. See related article

A. Anthony Antosh

Even though the SIS has been revised, the state’s top academic researcher in developmental disabilities, A. Anthony Antosh, told the commission that using the SIS as a funding tool violates the original intent of the instrument as an aid for professionals designing individual programs of support for persons with disabilities.

Antosh, a commission member, is the retiring Director of the Sherlock Center on Disabilities at Rhode Island College.

His comments apparently prompted Kane to recall another moment in a Project Sustainability planning meeting in which Burns & Associates’ human services partner praised the multi-faceted assessment providers were using at the time to figure out how much funding a particular person needed. In each case, the assessment took into account intellectual capacity, responses in various situations and potential risks.

That Burns & Associates partner, the Human Services Research Institute of Oregon, wrote a memo to the General Assembly saying that “ ‘resource allocation’ should never be thought of as mostly an exercise involving the assessment and simple service delivery.”

Policy makers should also take into account the goals of the programs, such as increasing community integration or increasing employment, before determining the array of services and rate schedules, HSRI said.

“Data collected by a measure such as the SIS is necessary,” the memo said, “but certainly not sufficient.”

The memo was condensed before it reached the General Assembly, and the recommendation against using the SIS alone to determine individual funding was eliminated,

For RI Adults With DD, Work Is A Choice, Not A Mandate, Says Federal Civil Rights Consent Decree

Kiernan O’Donnell, foreground, addresses DDD public forum in East Providence, RI, while Charles Moseley, independent federal court monitor in Rhode Island’s Olmstead consent decree case, participates via video link. All photos by Anne Peters.

By Gina Macris

It’s no secret that Rhode Island’s Olmstead consent decree has put the focus on employment opportunities – and challenges –in the system of state-funded services for adults with developmental disabilities.

Four and a half years after the consent decree took effect, the state Division of Developmental Disabilities (DDD) still finds it necessary to punch holes in the myths about what the state’s Employment First policy means and doesn’t mean. Employment First was created to respond to the consent decree’s push toward integration of those isolated in sheltered workshops and day programs, as required by the Olmstead decision of the U.S. Supreme Court, which reaffirmed a key part of the Americans With Disabilities Act.

“We’ve had a lot of people worry that if they don’t work, they won’t get benefits,” said Anne LeClerc, Associate Director of Program Performance.

That’s simply not true, LeClerc told about 80 people crammed into a room at the East Providence Senior Center and an unknown number of others who watched the presentation live on Facebook from the comfort of their homes.

Tina Spears, L, hands Microphone to Anne LeClerc

LeClerc said there’s there’s no requirement that adults with developmental disabilities who receive state-funded services must work, but if they want to be employed, the state will provide job-related supports.

“Not everyone has to work, or is ready for work now,” she said. Individuals may have health or family issues that prevent them from working. It may take “a long time” for people to prepare for work in various ways, LeClerc said.

The federal court monitor in the consent decree case, Charles Moseley, chimed in via video link:

The consent decree requires those who choose not to work to make an “informed choice,” he said. What makes a decision an informed choice are trial work experiences, with the appropriate supports, and a vocational assessment, Moseley said.

And back in East Providence, Kiernan O’Donnell added a third element of informed choice: individualized benefits counseling from a specially-trained expert in how a paycheck might affect Social Security or other financial support received by a person with disabilities.

O’Donnell is co-president of the Rhode Island chapter of the Association of People Supporting Employment First (RIAPSE.)

He said Social Security benefits are so complicated that only specially trained counselors are qualified to recommend work options to individuals receiving public assistance. (The Paul Sherlock Center on Disabilities at Rhode Island College offers free Work Incentives Public Information Sessions. For more information, click here.

The “Variance”

LeClerc, meanwhile, said individuals 62 years old and older who don’t want to work may simply choose to retire.

People younger than 62 who opt out of the job market must submit a variance to the state’s Employment First policy, LeClerc explained, “A variance is just documentation of a decision not to work,” she said.

The variance form asks why “work is not right for you,” LeClerc said. Someone prevented from working by poor health need simply note that as a reason, but no medical documentation is necessary, she said.

Ken Renaud, a leader in the family advocacy group RI FORCE, asked whether the variance is something that must be revisited “every single year.”

“The variance itself is a one-time thing,” LeClerc replied. During individual service plan meetings held annually, those individuals who have previously chosen variances will simply be asked whether they’re still happy with their decisions not to work. If not, they may reconsider.

One member of the audience told LeClerc about the experiences of individuals over retirement age whose individual service plans were rejected because they didn’t have a career development component. Individual service plans are important documents used by DDD to document the services that Medicaid will pay for.

LeClerc said the service plans shouldn’t have been turned back; the career development component could have been simply marked “retired.”

“We’ll work on making that clearer,” she said.

If the problem occurs again, LeClerc told the woman, consumers and their advocates should get in touch with her. ( LeClerc can be reached at 401-462-0192 or Anne.LeClerc@bhddh.ri.gov.

Fact vs Myth

O’Donnell, the RIAPSE leader, sought to give the audience a toolkit for myth-busting that went far beyond the correction of one falsehood. “Knowledge is power,” he said. “Lack of knowledge can prohibit people from pursuing their dreams. Myths sometimes rule the dreams you pursue or don’t pursue.”

O’Donnell’s general advice: get the information in writing. APSE, the national organization of supported employment advocates and professionals, offers its own fact sheet busting the “Top Ten Myths” of Social Security Benefits.

“Let’s not get hung up on barriers when we are able to combat them with knowledge,” he said.

Worries About Funding

Mary Beth Cournoyer, who serves on a community advisory committee, the Employment First Task Force, said that many people looking for jobs need “customized employment” – self-employment or work individually designed to match the skills of a particular employee with the needs of an employer.

For example, someone with a disability can be trained for a part-time job running the paper shredder at a large law firm, freeing support staff for other duties.

The idea of customized employment is “new to families,” said Cournoyer, who has a son with a developmental disability. Parents feel that they may need 30 hours of job coaching, but only have enough funding for 10 hours, she said.

“I don’t want to see jobs and capacity missed because we don’t have enough money for a coach,” she said.

Moseley said Cournoyer’s concerns about funding for services “is a great question for Kerri” – a reference to Kerri Zanchi, Director of Developmental Disabilities.

Funding “is a challenge. It might change,” he said.

Moseley segued to initiatives that might improve the outlook for adults with developmental disabilities and their families, including a commission, chaired by State Rep. Louis DiPalma, D-Middletown, to study the effectiveness of the current funding system. The commission is expected to convene in October.

In August, Moseley said, he talked to private service providers about changes they are making. “There are a lot of exciting things moving forward, but also barriers,” he said.

Zanchi, meanwhile, ticked off initiatives of DDD, including the preparation of an application to the Centers for Medicare and Medicaid Services for approval of a pilot Alternative Payment Model that would give providers a flat rate for a defined bundle of services rather than the current fee-for-service reimbursements that providers say restrict their flexibility to meet clients’ needs.

Zanchi and LeClerc both emphasized improvements in data collection that will help them better identify and respond to the needs of those served by the developmental disability service system.

“Thanks for being here,” LeClerc said with a smile, addressing the audience, “and for bringing these things up constantly.”

Met by a round of laughter, LeClerc added, “I mean that sincerely. “

Lenore Costa

One mother, Lenore Costa, said her son, who has Fragile X syndrome, has not been able to get any developmental disability services in the year the family has lived in Rhode Island. Costa said she moved from Massachusetts, where her son received day, evening and weekend services, to take advantage of a professional opportunity as a nursing executive.

It’s a big job, she said, but her son’s needs are also a full-time job.

Zanchi connected Costa with a DDD social work supervisor, who sat down with her after the meeting.

Deborah Masland, part of a consumer panel that offered commentary on the meeting, said “people’s jobs should not be threatened because they can’t find services for a loved one.”

Masland works at the Rhode Island Parent Information Network with families facing special health care needs and has a 19- year-old daughter, Olivia, who has loved her 12 years of schooling and is now in her first transition year.

Olivia has a work trial in food prep at a Chili’s restaurant 45 minutes a week, and while she’s excited about her t-shirt, her hat, and her special work shoes, her mother said she’s not sure that the experience is preparing her for a job.

Quality of Leisure Activities Questioned

Anne Peters said her 27-year-old daughter has been looking for a job for three years, and any work she finds will be part time. With that in mind, she asked whether the emphasis on jobs is jeopardizing the quality of non-work day services.

Heather Mincey, the assistant director of developmental disability services, said that was a hard question to answer on an individual basis.

Job-related supports cost more than non-work services, but they both come out of a fixed funding authorization for a particular individual. Mincey suggested that over time, the funding for work and non-work activities will even out if job supports eventually can be faded away.

With the closing of some day programs, Peters said, there are a “lot of movies and malls” for “non-work services,” suggesting that more purposeful activities would better meet quality standards.

Mincey acknowledged that it is difficult for providers to shift from center-based care to integrated services. She noted that DDD recently hired two quality assurance officials to work with LeClerc for a year on program improvements.

Peters added that addressing high turnover and low wages among support staff is a critical part of any solution to the problems the system faces.

Christopher Semonelli, vice-president of RI FORCE (Families Organized For Reform Change and Empowerment) said members of the General Assembly need to hear the breadth and depth of concerns expressed at quarterly public forums.

He said RI FORCE will sponsor a candidates’ forum Oct. 3 from 4 to 7 p.m. at the Newport campus of the Community College of Rhode Island.

Advocacy is “huge,” he said, but “you can only eat an elephant one bite at a time.”

(RI FORCE streamed the public forum live on Facebook and the video remains on its Facebook page.)

RI Gov Pledges To Support "Current Level" Of DD Services In FY 19; No Fiscal Details Yet

By Gina Macris

Rhode Island Governor Gina Raimondo says her administration is committed to maintaining “the current level of services” for adults with developmental disabilities in order to meet the demands of a 2014 consent decree between the state and federal government.

But in a letter to a federal court monitor in the consent decree case, the governor did not spell out how much money the administration believes the state should spend.

The consent decree is a 2014 agreement between the state and the U.S. Department of Justice (DOJ) which requires Rhode Island to correct violations of the Americans With Disabilities Act by enabling adults with intellectual or developmental challenges to seek competitive employment and enjoy community-based, integrated non-work activities.

In the letter to the monitor, Raimondo wrote: “I will continue to work collaboratively with the General Assembly on all funding recommendations, including those supporting efforts under the Consent Decree.”  

Following better-than-expected revenue projections issued May 10, both House and Senate leaders said that at a minimum, they support restoration of an $18.4 million reduction in reimbursements to private service providers that Raimondo has proposed for the budget cycle beginning July 1.

The consent decree monitor, Charles Moseley, had sought three specific assurances from Raimondo, in the form of a letter or statement to U.S. District Court Judge John J. McConnell Jr.

Moseley asked that the letter or statement say that the budget would:

•  “be re-set to reflect current FY 2018 expenditure and service levels”
•  “continue to be revised throughout FY 2019 as needed to fully fund the provision of services”           consistent with requirements of the consent decree
•  provide “sufficient personnel resources” to the Division of Developmental Disabilities to   “carry out  quality improvement activities consistent with Consent Decree requirements.”

Raimondo’s letter to Moseley, dated May 14, contains no details about any budget changes she may be planning. Nor does it mention quality improvement activities. 

On May 18, a spokeswoman for Raimondo said that “increasing funding for developmental disability support services is one shared priority for which she (the governor) continues to advocate as we further engage in discussions with the General Assembly about the final budget."

Asked whether the governor supports the employment of adults with disabilities as one of the state's workforce solutions, the governor's spokeswoman pointed out the new Real Pathways RI program. It is a workforce investment initiative that focuses on job-seekers who face various barriers to employment. Among the public, private, and non-profit organizations that participate in the program are four providers of developmental disability services, who are working with Home Depot and CVS to match their clients to jobs. 

Moseley had requested a statement from the governor on her position as he prepared to make recommendations to McConnell about what court action, if any, might be needed to ensure that compliance with the consent decree moves forward.

At the most recent court hearing April 10, the judge directed Moseley to find out if there was consensus among state officials and DOJ lawyers about a course of action the court might take to ensure enough funding. Failing such an agreement, McConnell said, he would hold an evidentiary hearing to lay the groundwork for a court order.

Moseley has concluded that Raimondo’s proposed budget, as it now stands, is insufficient to continue to support the modest salary increases to direct support workers put forward by Raimondo and approved by the General Assembly in the last two years. In addition, it would not allow the state to “continue services at current levels,” he said.

The monitor described his efforts to get a sense of the state’s position a  letter to Eric Beane, the Secretary of Health and Human Services, dated May 9. That was a day before the state’s revenue estimating conference concluded that revenues were projected to exceed previous estimates by $135 million through the end of Fiscal 2019.

A week earlier, on May 2, the director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) did not dispute the monitor’s conclusions about the inadequacy of the proposed budget for the next fiscal year, Moseley wrote to Beane.

But the director, Rebecca Boss, “affirmed governor’s commitment to fully fund Consent Decree activities during FY (Fiscal Year) 19 and said that no rate cuts in reimbursements or spending reductions were being proposed,” according to Moseley.

“She noted that the Governor had demonstrated a history of including supplemental funding to the DD (developmental disabilities) services budget when expenditures exceeded enacted amounts and would continue to do so if necessary,”  Moseley wrote.

On separate occasions, both Boss and Beane said assurances about the state’s support of the consent decree could be sought from the governor, Moseley recalled.

For some time, Moseley has said that the Division of Developmental Disabilities needs four fulltime inspectors to conduct onsite reviews of all three dozen private service providers every two years and to ensure their services meet the standards of the consent decree.

He said Kerri Zanchi, director of developmental disabilities, and Kevin Savage, the BHDDH licensing administrator, “argued strongly” during a meeting with Moseley May 2 that two inspectors, or “surveyors” as they will be called, “would be sufficient to meet the need and ensure compliance” along with an data analyst and “other measures.”  Zanchi was to provide a subsequent written analysis of the rationale for the BHDDH approach.

In an earlier report to the monitor, BHDDH officials explained their plan for a centralized, departmental quality assurance unit. In the first year, the two surveyors would be supervised by Anne LeClerc, Associate Director of Program Performance in the Division of Developmental Disabilities, which is also to have the benefit of its own data analyst and a divisional operations manager.

In this initial year, the new “surveyors” will enable the division to rigorously analyze the effectiveness of its existing day services to better plan for future improvements, according to the state’s report to the monitor April 30.

In the second year, however, the surveyors will be assigned to a centralized quality management unit to connect the BHDDH investigatory unit with licensing and certification of private service providers, according to the state’s quarterly report. 

Raimondo's spokeswoman said she supports the BHDDH quality improvement plan. 

To date, there have been no filings in the court record indicating what Moseley will recommend to the judge.

To read Governor Raimondo's letter to the consent decree monitor, click here.

To read the consent decree monitor's letter to the Secretary of Health and Human Services click here.

RI Senate Finance, BHDDH To Seek More Funding To Protect Services And Rights Of Adults with DD

By Gina Macris

Governor Gina Raimondo’s proposed $18.4 million cut to developmental disability services for the next fiscal year would not allow Rhode Island to continue its compliance efforts in connection with a 2014 federal consent decree, Rebecca Boss acknowledged for the first time during a budget hearing before the Senate Finance Committee on May 3.  

Boss - RI CApitol tv

Boss is the highest ranking official in the Raimondo administration responsible for adults with developmental disabilities in her position as the director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).  

Her admission came in response to the finance committee chairman, Sen. William J. Conley, Jr., who laid out a detailed and persistent line of questioning that revealed an authoritative grasp of the issues of the the consent decree and established him as a leading advocate for expanding the developmental disabilities budget.  

Boss said in initial remarks that based on an “updated data analysis of monthly caseloads and more positive revenue trends, we will be advocating for increased funding for BHDDH so Rhode Islanders’ needs are met.”

Conley - RI CAPITOL TV 

But Conley asked her to revisit a specific question about funding that had first been posed to her by U.S. District Court Judge John J. McConnell, Jr. during a hearing April 10. McConnell asked whether the proposed $18.4 million cut in reimbursements to private providers effective July 1 would affect the state’s ability to move forward with compliance efforts related to the consent decree.

At the time, Boss said BHDDH did not have enough data to give an answer.

Conley said the consent decree “does nothing more, quite frankly, than require the same standards that the U.S. Supreme Court established in 1999.”

The so-called Olmstead decision clarified the integration mandate of the Americans With Disabilities Act, spelling out the rights of all individuals with disabilities to choose services that are part of their communities.    

Nearly 20 years after the Olmstead decision, Rhode Island is “still struggling to meet a constitutional standard of care,” Conley said.

“Four years after the consent decree was entered and after repeated court monitor reports, we still cannot answer the question as to whether or not we are providing sufficient resources, really, to provide justice and dignity to the people with intellectual and developmental disabilities in the state of Rhode Island.”

“While I understand you have to represent the voice of the administration, and everybody expects you to be a loyal soldier and team player, the budget that you are giving us doesn’t do that,” Conley said, addressing Boss.

Otherwise, Boss would have been able to clearly answer the judge that the loss of $18 million would not affect progress on the consent decree and would have been able to spell out how its goals would be achieved with the remaining funds, Conley said.

When Conley asked what the Senate Finance Committee could do to help BHDDH, Boss and the Director of Developmental Disabilities, Kerri Zanchi, both said members could advocate for more flexibility for the department to assign resources.

Boss said she agreed that the department needs more resources but wasn’t sure that the prescriptive nature of the consent decree was the best approach.

But Conley replied said that when the state isn’t meeting the standards, or doesn’t have the data to show its progress – a problem since 2014 – “the default position is prescriptive standards, because they need some kind of measuring stick.”

One measure is whether the “proposed budget would provide the level of services that are constitutionally mandated,” Conley said.

“What’s your answer today?” he asked, bringing the discussion full circle back to the judge’s question.  

Boss said, “With the revised analytics done, we could say today that the budget proposed would not continue the service delivery” in the current fiscal year.  The consent decree requires an increase in commitment during each year of implementation. equired by the consent decree.

While Boss did not offer a figure, Sen. Louis D. DiPalma, D-Middletown, the first vice-chairman of the committee, said developmental disabilities would need about $275 million to $280 million in federal and state funding during the next fiscal year, based on the original budget request the department made to the Governor’s office last fall.

DiPalma presented a chart showing that actual funding for developmental disabilities has lagged behind inflation since July 1, 2011, which marked the introduction of “Project Sustainability,” the current fee-for service reimbursement system that has come under increasing criticism for imposing restrictions on providers – and the state bureaucracy – in implementing the consent decree.

For example, the chart shows that the $239.8 million allocated for developmental disabilities effective July 1, 2010 would be the equivalent of $274.5 million allocated effective July 1, 2018, the start of the next fiscal year, with an adjustment for inflation according to the consumer price index.

Raimondo’s proposal, as it now stands, would allocate only $248.1 million effective July 1, counting only the federal-state Medicaid funding. (Other miscellaneous funds would add slightly more than $2 million to the bottom line.)

The Senate on May 1 gave final approval to a resolution creating a special commission to study the reimbursement system under Project Sustainability, including the use of a standardized assessment tool keyed to a funding formula that has never been disclosed. The commission has until March 1, 2019 to issue its report.

Sen. Walter S. Felag, Jr., D-Warren, Bristol and Tiverton, said he favors fully funding developmental disabilities.

He said it seems that in the last eight to ten years, there has been “tremendous pressure” to decrease these expenditures,” with particular challenges on residential costs from 2013 to 2017 as BHDDH has tried to move people out of group homes to less expensive shared living arrangements.  He questioned whether it has been all worthwhile.

Boss said there have been investments in developmental disabilities in that time, and Conley remarked that Boss and her staff are doing “tremendous work” with the resources they do have.

Beth Upham put a parent’s perspective on services. Her daughter, Stacy, a resident of a group home with an active calendar, “has a life we never could have given her,” she said.

She said she has met with Governor Raimondo, who has “promised she would support this community.”

But if the governor’s existing budget proposal is enacted, Upham said, “every person in the system will suffer. They will be sicker. There will be more hospitalizations. My daughter, my baby girl, will suffer,” Upham said.

“We have been fighting this system ever since she turned 21,” Upham said.

She asked, “why, for the last 15 years, has this community been targeted for cuts?”

RI Consent Decree Monitor Will Draw Up Proposed Judicial Order to Ensure Adequate State Funding

By Gina Macris

Judge John J. McConnell, Jr. of U.S. District Court signaled during a hearing April 10 that he is prepared to act to ensure that Rhode Island complies with a requirement of a 2014 consent decree that calls for “timely” funding of integrated services for adults with developmental disabilities.

But it is not yet clear what judicial action might look like in relation to the language of the consent decree, which does not quantify compliance in terms of dollars and cents.

Governor Gina Raimondo has proposed a developmental disabilities budget for the fiscal year beginning July 1 that would cut $18.4 million in federal and state Medicaid funds from current spending limits on privately-operated developmental disability services for adults and another $3 million from a state-operated network of group homes.  

That reduction comes on the heels of an already-underfunded system of services and would “permanently derail compliance with the consent decree,” said Jeffrey Kasle, lawyer for nine service providers, who spoke during the informal hearing, or “status conference” at the invitation of an independent court monitor.

The monitor, Charles Moseley, said he would  draw up a list of proposed funding-related actions for the judge to consider. Marc DeSisto, the state’s lawyer, and Victoria Thomas, who represented the U.S. Department of Justice, each said they wanted to review the proposal before the judge takes action.

If there is no consensus, McConnell said, he will hold a formal hearing and take evidence before issuing an order.

Since 2016, when he began reviewing the consent decree, McConnell has tried to make information about compliance accessible to the public, insisting that periodic conferences be held in open court and stressing the informality of the proceedings.

The review on April 10 was no exception, as the lawyers and state officials spoke from a podium facing the audience in the towering, mahogany-paneled courtroom, so spectators could better hear the proceedings. McConnell, wearing business clothes instead of his judicial robes, sat near the court stenographer just inside a circular bar that normally separates litigants from the public. 

The informal atmosphere, however, belied the gravity of the funding issue, which McConnell called the “elephant in the room,” and its implications for judicial action.

The monitor, Moseley, and lawyers for the DOJ and the providers all concurred in their concerns over funding. 

Officials of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) said they needed better data to make a case for a bigger budget and noted that $116 million more will have been spent on developmental disabilities during the Raimondo administration,  between 2015 and 2019, than was spent from 2010 to 2014.

It was in 2014 that Rhode Island was found in violation of the integration mandate of the Americans With Disabilities Act (ADA) by relying on a segregated system of work and non-work activities that could survive on significantly less staffing that is mandated today through the consent decree.

Kasle, the providers’ lawyer, noted that the current administration at BHDDH, led by department director Rebecca Boss and the director of the Division of Developmental Disabilities, Kerri Zanchi, have shown a commitment to collaborating with providers that is the “best in a decade.”

But much of the state’s current compliance with the consent decree occurs because the private providers are doing the work, Kasle said.

“If all they can do is keep people safe,” he said, consent decree compliance will “fall apart.”

A decade ago, direct care workers made $3 to $5 more an hour than minimum wage, Kasle said. The legislative efforts to raise wages in the last two years, which added $11 million to the budget, are appreciated but they have just kept the workers on a par with the minimum wage, he said

For providers,  who can pay only $11 or $12 an hour, “it’s almost impossible to fill jobs,” Kasle said.

And if the state is to integrate individuals with developmental disabilities in the community, allowing them a choice in how their programming will be achieved, the state will need more direct care workers, he said.

Victoria Thomas, a lawyer for the DOJ, said that on the most recent site visit in February, she and her colleagues spoke to a provider who had had to lay off several middle managers because of budgetary constraints.

Employees have seen their salaries cut; paid vacation was eliminated, and workers have had to increase their contributions to health care, Thomas said.

The judge, meanwhile, asked Boss, the BHDDH director, whether the state can comply with the consent decree if Governor Raimondo’s budget for the next fiscal year is enacted without any changes.

Boss said she didn’t know the answer. Nor could she say whether BHDDH could comply with the consent decree if no cuts were made and current spending was maintained. 

Boss said BHDDH is “committed to implementing the consent decree. We want every individual to live in the community as they wish.”

Last fall, Boss submitted her department's budget request for the fiscal year beginning July 1 far higher than what Governor Raimondo later proposed to the legislature.  Boss asked for a total of $278.8 million in federal and state funds, or $28 million more than what Raimondo ultimately submitted to the General Assembly.

In a cover letter, Boss wrote at the time that “any further reductions could have further significant repercussions financially and operationally for the department further impacting some of the most vulnerable citizens within our state.”

For the fiscal year beginning July 1, Raimondo has proposed $250.8 million for developmental disabilities, which is $6.1 million less than the bottom line enacted by the General Assembly for the current fiscal year.

The proposal of $250.8 million is also $21.4 million less than current spending levels. Because of current cost overruns, Raimondo has proposed adding $15.3 million to the existing budget of $256.9 million, for a total of $272.2 million, to fill the budget gap through the end of the fiscal year June 30.

RI DD Advocates Warn Of 'Massive Retrenchment' From Proposed $21.4 Million Spending Reduction

                                                                                                                                                                                                                                                                           All Photos by Anne Peters

Donna Martin, executive director of the Community Provider Network of Rhode Island,  speaks during the Day Of Action, sponsored by the provider network. Standing, l to r, are Rep. Deborah Ruggiero, (D-Jamestown and Middletown); Rep. Dennis M. Canario, (D-Portsmouth, Little Compton and Tiverton), and Rep. Teresa A. Tanzi, (D-Narragansett and South Kingstown.  Seated on the steps below the State House Rotunda are advocates representing the service provider Spurwink RI. 

By Gina Macris

Rhode Island would see a “massive retrenchment” in services for adults with developmental disabilities if Governor Gina Raimondo’s proposed budget is enacted for the next fiscal year, a spokeswoman for providers told members of the House Finance Committee at a hearing March 29.

Pam Goes 

In human terms, Raimondo’s plan to cut $21.4 million from current spending levels would diminish the quality of life for some 4,000 individuals whose care is already undercut by low wages and high turnover among caregivers, said Pam Goes of Warwick, who has two sons with developmental disabilities, including one who cannot express his needs verbally. 

Goes delivered the same message at a “Day of Action” in commemoration of March as Developmental Disability Awareness Month under the State House Rotunda in mid-afternoon as scores of adults with disabilities and their supporters lined the steps leading to the House and Senate.  

State Sen. Louis DiPalma, D-Middletown, told the crowd that “people with developmental disabilities have the ability to lead a full and prosperous life. That’s why I’m here.'

Rep. Teresa Tanzi, D-Narraganset and South Kingstown, said that for the compassionate work they do, the wages of direct care workers are an “injustice.”

Tanzi, who chairs the Human Services Subcommitte of the House Finance Committee, presided over the budget hearing later in the afternoon.

Of the overall $21.4 million reduction from current spending levels in the next fiscal year, $18.4 million would come from private the agencies that provide most of the services and $3 million would be taken from a state-operated system of group homes.

Martin, executive director of the Community Provider Network of Rhode Island (CPNRI), did not mince words when she addressed Tanzi and other members of the House Finance Subcommittee.

She said “there is no way” that service providers will be able continue efforts to comply with new federal Medicaid regulations requiring integrated, community-based services and a 2014 federal consent decree that focuses on competitive employment for adults with developmental disabilities.

Needed Changes Are "Not Going To Happen" 

Compliance with the 2014 consent decree and the new Medicaid regulations, called the Home and Community Based Final Rule, depends on system-wide changes in the manner of care, and “that’s not going to happen” with an $18 million cut to private service providers, Martin said.

Instead, there will be a “tremendous reduction” in services, she said, with agencies forced to prioritize the health and safety individuals in their care. Employment –related services and the services necessary to provide community integration will suffer if the agencies must absorb an $18 million, Martin said. Workers’ hours and wages – which hover slightly above minimum wage – would be cut.

David Reiss, CEO of the Fogarty Center, the largest non-profit service provider in the state, said the agency simply cannot survive if the state imposes the $18.4 million reduction across the board. It represents about a 7 percent cut in spending. 

Reiss said he has closed five group homes in the past year, not because of a lack of demand but because he couldn’t find enough workers to staff them. Staff turnover is about 40 percent, he said. 

The starting wage at the Fogarty Center is $10.50 an hour, he said. Although the General Assembly has raised the pay for direct care workers slightly in the past two years, the minimum wage also has increased. It is now $10.10 and is scheduled to go up again next January to $10.50 an hour. Massachusetts has an $11.00 minimum wage and has agreed to pay direct care workers a minimum of $15 an hour beginning in July.

Raimondo’s budget includes no money for raising the wages of direct care workers this year, although a bill in the legislature would link increases in the minimum wage to raises for front-line staff, according to Martin, the CPNRI director.

High Staff Turnover Worries Parents

Pam Goes, the Warwick mother, discussed the impact of the high staff turnover on her non-verbal son.

“We feel like we are constantly starting over,” she said. Her son Paul needs to trust his caregiver, and that trust comes only with time and continuity of high quality care.

“It’s a difficult job for them to be on top of his moods ,” she said. “You need to get to know him,” she said. Paul will often test new staff to see how much he can get away with, she said, and he can become aggressive.

“I worry that there are so many people in and out of his life,” she said. “I worry that his communication is so limited. I especially worry about what happens when I’m gone,” she said.

“I want to advocate for a sustainable system where people live a good life,” she said. “It’s a lot of stress knowing the situation could become more untenable.”

About four thousand people receive services, she said, and “every family has a story like mine.”

Tom Kane, the CEO of AccessPoint Rhode Island, said Goes reminded him of the best compliment his agency ever received: “The work you did for our son allowed us to be the family we wanted to be."

A Call For More Funding

The budget is “about priorities. It’s about morality, and it’s about people” he said. “It should be about people.”

Kane called on the legislators to approve a proposed $15.3 million budget increase to cover cost overruns in the current fiscal year, as Raimondo has proposed, and then to add another $15 million in the budget cycle beginning July 1 to deal with a structural deficit and allow some growth.

Raimondo’s budget proposal does not acknowledge the structural deficit, he said. Instead her plan only temporarily grants additional funding, only to take it away in the next fiscal year.

The General Assembly approved total spending of $256.9 million for the current fiscal year. Raiimondo’s proposal would increase that figure to to $272.2 million. But in the fiscal year beginning July 1, her bottom line would drop to  $250.8 million. That figure is  $6.1 million less than the enacted budget and $21.4 million less than the temporary budget expansion Raimondo has proposed through June 30.

Kane presented figures which showed Rhode Island spends significantly less on adults with developmental disabilities than neighboring Massachusetts and Rhode Island.

The State of the States in Developmental Disabilities, a research project sponsored by the University of Colorado, tracks residential costs for adults with intellectual challenges. In 2015, the latest year for which data is available, the national average for residents of institutions with 16 or more beds was $256, 400 per person.

• Massachusetts spent $287,434 per person
• Connecticut spent $403,496
• Rhode Island spent nothing in that category. All those who would be in institutions in Massachusetts or Connecticut live in group homes in Rhode Island, Kane pointed out.

The average cost for group homes with six or fewer residents nationwide was $129,233 in 2015, according to the State of the States.

• Massachusetts spent $170,682 per person
• Connecticut spent $172,067 per person
• Rhode Island spent $114,973 per person                                       

Kane said the average per-person cost in Rhode Island is skewed upward by the state-operated system of group homes. According to the House Fiscal Office, the average per-capita cost for 139 residents of the state operated system is $207,251.

In the privately-operated group homes, however, the state spends about $60,000 a year per person, Kane said. Roughly 1200 individuals live in houses run by private agencies like Access Point RI  and the Fogarty Center.

Controversy Continues over Assessment

Kane turned to a discussion of the Supports Intensity Scale, a controversial assessment methodology that uses lengthy interviews to determine the level of services needed by persons with developmental disabilities on a case-by-case basis. It was introduced in 2011, ostensibly to correct “special considerations” for individual clients that state officials said posed a problem because they were driving up costs, Kane said. 

Ironically, he said, the assessment has prompted many more appeals of individual funding than the number of “special considerations” that had been granted previously.

Some people see the assessment as a problem since it was revised in November, 2016, because it has it has led to larger awards, Kane said.  A House fiscal analysis says the new assessment has added $17 million to developmental disability costs in the first 12 months it was used. 

Kane said service providers believe that the results of the original assessment were “manipulated to back into a budget that didn’t accurately reflect the needs of people.”  

The revised assessment, the Supports Intensity Scale – A, is being used “far more appropriately now,” he said.

The House Fiscal Advisor, Linda Haley, noted a “moratorium” in the use of the SIS-A. The director of the agency responsible for developmental disabilities, Rebecca Boss, explained that it was temporary, to allow officials to review their implementation of the revised assessment. 

A total of 46 errors in funding were corrected (see related article) and the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals continues to use the assessment for new entrants and for regularly-scheduled re-evaluations of clients. Boss said.

If an appeal includes documentation of changes in a person’s medical or behavioral needs that are likely to be long term, perhaps as part of the aging process, a client will receive a re-assessment with the SIS-A ahead of schedule, added Kerri Zanchi, Director of the Division of Developmental Disabilities.

Kevin Nerney, a spokesman for the Rhode Island Developmental Disabilities Council, discussed several initiatives that are intended to both improve services in compliance with federal law and cut costs over the long term.

But Rhode Island is not there yet, he said.

“We don’t want to destroy one system (of services) before creating a new one,” Nerney said. “We don’t want to leave people behind based on an arbitrary fiscal goal rather than the needs of people.”

He said he knows that some eligible individuals are unable to find services that fit their needs, alluding to an increase in the number of individuals who are receiving only case management  during the last couple of years. That figure jumped from 451 in 2016 to 643 this year.

“On paper, it may look like savings” for the state, Nerney said, but some of those families “are in crisis.”

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

By Gina Macris

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

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

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

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

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

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

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

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

"Logjam Cited In Onset Of Adult Services

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Other Issues Raised By Task Force

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

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

Assessing Individual Needs  

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

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

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

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

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

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

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

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

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

A Call for True Conflict–Free Planning

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Supported Employment At Issue

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

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

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

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

RI Revises Supported Employment; Providers And Families Invited To Information Sessions

By Gina Macris

The second year of a program to help Rhode Islanders with developmental disabilities find jobs will offer extra bonus money to encourage financially strapped private agencies to seek new clients, particularly young adults.

Zanchi     Photo by Anne Peters  

The state began the “performance-based” program last January to avoid federal court sanctions for failing to implement a 2014 consent decree aimed at giving individuals with disabilities greater access to regular jobs and integrated non-work activities.

“We’ve learned a lot in this first year,” said Kerri Zanchi, Director of the Division of Developmental Disabilities (DDD). Zanchi, the first developmental disabilities professional to head DDD in at least a decade, began work in Rhode Island shortly after the supported employment program kicked off a year ago.

Zanchi elaborated on the status of the program, in which private agencies provide supportive job-seeking and job-retention services, during a telephone interview Jan. 5.

She said that in the initial contract year, which ended in December, 22 private agencies offered supported employment services to about 440 adults with developmental disabilities, with about 150 gaining employment at minimum wage or higher.

In the coming year, Zanchi said, she hopes the opportunities for enhanced performance payments and other changes prove “more responsive to the needs of consumers” and that the number of providers will expand. 

DDD will host information sessions Monday, Jan. 8 and Friday, Jan. 19 for private providers seeking to renew their contracts or establish new ones and for so-called “self-directed” families, who take on the design and direct supervision of a loved one’s activities. Few of these families have been able to participate in the performance-based program during its first year, according to anecdotal reports. 

A key addition to the menu of performance payments to providers is a bonus of $600 for each new client who signs on for employment-related services, or $1,000 for young adults who left high school between 2013 and 2016. These bonuses are due once the new client has received 20 hours of employment-related supports.

The consent decree places particular emphasis on young adults with intellectual or developmental disabilities, because investigators for the U.S. Department of Justice believed they are at heightened risk for isolation and segregation as they move from high school to adult services.

The consent decree draws its authority from the Olmstead decision of the U.S. Supreme Court, which reinforces the mandate for integrated services in the Americans With Disabilities Act

The young adult group also is the only segment of the consent decree population – more than 3,000 individuals altogether –for which the state is significantly out of compliance with court approved targets for job placement.

A reluctance among established agencies to expand their client roster has resulted in limited choices for the families of young adults; prompting them to direct their own services. But that choice also has made it generally more difficult to access the supported employment program, according to various reports about families’ experiences during the first year of the program.

Providers have told state officials that in many cases they can’t take on new clients because of low reimbursement rates and high staff turnover, and because the bonuses of the initial cycle of the supported employment program did not pay for the costs both of training new workers, as well as providing the actual services.

The graduation rate for a tuition-free training program offered by the Sherlock Center on Disabilities at Rhode Island College is 40 percent, with students dropping out for a variety of reasons, most of them related to high turnover and short-staffing at the provider agencies.  

In the second year, providers can expect an increase of $460 for training each new job coach, from $350 to $810 per trainee, according to materials from the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), which were released by Zanchi.

The information sessions will be at the Arnold Conference Center in the Reagan Building of the Eleanor Slater Hospital, 111 Howard Ave., Cranston, Monday, Jan. 8, from 2 to 4 p.m. and Friday, Jan. 19, from 9 to 11 a.m.

In 2016, just after a U.S. District Court judge ordered the state to come up with a new “reimbursement model” that would give adults with developmental disabilities access to regular jobs. Shortly after that, the General Assembly allocated $6.8 million in state funds to finance what became the performance-based supported employment program.

Besides the bonuses, the revised program includes increased allocations – a total of $8,000 a year per client, according to the latest BHDDH figures – for provider reimbursements for employment services.

Zanchi said that the original $6.8 million allocation will continue to fund the first six months of the second year of the performance-based program until June 30, when BHDDH expects to return an estimated $2 million to the state.

The return of the estimated $2 million in unused supported employment funds was part of a deficit reduction plan outlined by BHDDH director Rebecca Boss Nov. 30 to close an estimated $15.9 millionf departmental deficit, including $12 million in developmental disabilities.. But it is well-understood within BHDDH that from a fiscal perspective, supported employment must continue because it is a court-ordered service.  

BHDDH has requested new funding, with projected utilization based on the first full year of programmatic experience, for the state’s next fiscal year beginning July 1, Zanchi said.

She did not say how much BHDDH  will seek for supported employment. Governor Gina Raimondo is expected to submit her budget to the General Assembly later this month.

RI Olmstead Judge Says He'll Be Keeping Eye On State And Federal Funding For Disability Services

By Gina Macris

John J. McConnell, Jr., the U.S. District Court judge overseeing changes in Rhode Island’s developmental disability service system, has signaled that that future funding of the social services is very much on his mind.

During a hearing Nov. 30 in Providence, McConnell listened to the state’s summary of the latest progress and the work still to be done to achieve the goals necessary to transform Rhode Island’s segregated services for persons with developmental disabilities into an integrated, community-based model. The transformation would bring Rhode Island into compliance with the U.S. Supreme Court Olmstead decision clarifying the integration mandate of the Americans With Disabilities Act.

After Kerri Zanchi, the state Director of Developmental Disabilities, had finished her prepared remarks, McConnell interjected the observation that the necessary services are all “contingent on funding.”

“Funding is a key issue,” both at the state and federal level, he said. 

 Zanchi, too, expressed concerns, saying the developmental disability community needs advocacy to make its case on budget issues.

Most recently in Washington, disability rights advocates have said that the proposed tax cuts now before Congress would result in reductions in spending through Medicaid, the federal-state program that pays for services required by a 2013 interim agreement and a broader 2014 consent decree between the state of Rhode Island and the U.S. Department of Justice.

In addition, the federal government’s re-direction of some vocational rehabilitation funding from Rhode Island to Texas has triggered a waiting list, effective Dec. 1, for future clients of Rhode Island’s Office of Rehabilitation Services (ORS), which is involved in implementing both the 2013 and 2014 agreements.

No one currently served by ORS will be affected, but by the time the court is scheduled to reconvene in April, the waiting list could include applicants for services who are covered by the consent decree or the interim agreement.

Meanwhile, Rhode Island’s implementation of the agreements has contributed to a projected cost overrun of almost $26 million in federal and state Medicaid funds for developmental disability services in the current fiscal year, and the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) is under pressure to find ways to cut costs.

McConnell said he hoped that state officials will take into consideration the requirements of the 2014 consent decree (and the more limited interim agreement) as they look for cuts in social services in the coming months.

He said he wanted it known that “the third equal branch of government is watching.”

State Details Compliance Efforts  

The Nov. 30 hearing concerned those who are covered by the so-called “Interim Settlement Agreement,” originally 125 former students at the Birch Academy at Mount Pleasant High School in Providence who at one time were funneled into jobs paying sub-minimum wage at the former sheltered workshop, Training Through Placement (TTP) in North Providence. 

The latest update puts the current number in this group at 91 individuals whose cases are still open at the state Division of Developmental Disabilities (DDD), said Zanchi, the division director.

She summarized the state’s progress in working with them:

• 51 have jobs in the community paying at least minimum wage
• 21 are unemployed but job-hunting, with support 
• 7 are currently inactive
• 12 have chosen not to work but are receiving integrated day services from a total of 12 providers.

In a report to the court submitted the eve of the hearing, an independent monitor, Charles Moseley, framed the employment statistics differently.

He zeroed in on an order from McConnell in June that the state follow up on 46 unemployed members of the class protected by the interim agreement of 2013, including 34 who had never had a job in the community.

Among the group of 46, Moseley said the state had made 11 job placements as of the end of October. That is most of the goal of 15 placements that must be made by March 23, 2018. An additional 16 placements must be made by June 23, 2018, and target dates for the remaining 15 placements are to be determined, he said. (Some of them have indicated they don't want to work.)

'Underperformance' Of One Provider Hurt State

Much of the testimony, as well as Moseley’s comprehensive report, concerned Community Work Services, the successor to TTP, the sheltered workshop at the center of the U.S. Department of Justice investigation that led to the interim agreement of 2013.

CWS serves 57 of the 91 individuals covered by the interim agreement, according to Zanchi. (CWS’ own report to the monitor earlier in November put that figure at 59, with 5 of the 59 transitioning to other providers.)    

Of the CWS clients covered by the interim agreement, 25 belong to the group of 46 unemployed individuals the judge said needed special attention, according to Moseley’s report. The rest are served by other providers.

Zanchi said the “underperformance” of CWS “has directly contributed” to the state’s non-compliance with the interim agreement’s targets for employment and integrated non-work services. CWS is a subsidiary of Fedcap Rehabilitation Services of New York.

By now, the state was to have found jobs for all members of the former Birch and TTP group who made an informed choice to seek employment. 

Zanchi said the current CWS leadership has shown a “solid grasp of the significant change needed in their organizational structure” as well as the fact that it needs to reach performance goals “expeditiously.”

She emphasized that CWS’ “re-engagement of families” to support integrated services “cannot be understated.”

She shared the story of one young CWS client and the client's parents, who in a two-year span, had gradually shifted from adamant opposition toward warm embrace of the idea of employment. The client ow volunteers at the Rhode Island Community Food Bank and a local food pantry and meets with a job developer each week to explore part-time job opportunities, Zanchi said.  

CWS Nearly Lost License

In May, CWS had come under fire – and was close to losing its license to operate in Rhode Island – for substandard programming, according to Moseley.

Since then, there has been a nearly complete turnover of staff and management at CWS, which has drawn up a new blueprint for change in keeping with principles of “person-centered planning,” putting the individual’s needs and preferences at the center of customized plans for immediate services and long-term goals. 

CWS also has begun a pilot program called “Employment Without Walls” with 7 clients who are hunting for jobs. 

The CWS plan was included in a 59-page report to the court from Moseley. Also included in Moseley's report was an evaluation from William Ashe, a Vermont-based consultant, who worked with Moseley in conducting a three-day, on-site review of CWS in early October.

Ashe, who had first evaluated CWS in October, 2015, said that “CWS is very different from the organization that was visited some two years ago.”

At the same time, Ashe said that “It was my hope that more gains would have been made over these 24 months than has been the case, particularly in the degree of sophistication of the person-centered planning process.” He noted that CWS, led by program director Lori Norris, “appears committed to restructuring the services and supports that it provides to comply with the ISA (Interim Settlement Agreement of 2013) and state regulations.“

In an interview, Ashe said, Norris also touched on financial challenges, which plague all service providers in Rhode Island as they struggle to help BHDDH meet the requirements of the federal mandates and still remain solvent.

According to Ashe’s report, Norris said “her superiors at FedCap are committed to success and will assure the proper level of staffing support even if this resource level is greater than what the current billing authorizations will support.”

CWS’ probationary license ends Dec. 31 and BHDDH must decide whether the agency will continue operating in Rhode Island.

The Massachusetts operations of CWS, a Boston-based agency, are now headed by Craig Stenning, Rhode Island’s former BHDDH director, who is also listed as Fedcap’s Senior Vice President for the New England region on the Fedcap website.  

In his report, Ashe said Norris “was candid in her comments” during the October interview, “stating that the CWS program status at the time of her appointment (six months earlier) was very inadequate across most areas of performance.

“She described her efforts over this past six-month period to change the culture of CWS,” a drive that included a large turnover of staff.

CWS Tries Turnaround

After visiting KFI, a model program for integrated services in Maine, Norris told Ashe, she took several steps at CWS.

Norris, according to Ashe’s report, has:

• Stopped renovations at the former TTP building, instead planning to abandon any reliance on a facility for integrated services as of Jan. 1. (The former TTP building had been ordered closed to clients by the state in March, 2017 because of unsafe conditions. CWS’ license was suspended for a few days until it found a substitute location in quarters owned by the Fogarty Center.)  
• Discontinued the use of vans to transport clients, instead opting to arrange for staff members to use their own cars on the job.
• Changed the job title of direct support staff to community advocate, saying she believes “this title better reflects the culture change she wishes to establish and more accurately conforms to the expectation for how she wants staff to approach their work.”
• Adopted a flexible work schedule for staff, so that they are available evenings and weekends to support clients who work outside normal business hours.

Problems Extend Beyond CWS

Moseley, the monitor, noted in his report that the non-work services received by CWS clients do not meet the requirements of the interim agreement or the statewide consent decree for integrated activities. 

These activities are intended to “provide individuals with disabilities with opportunities to fully engage with people without disabilities in the mainstream” of social life as well as work, he said.

Practical and effective strategies for achieving these goals are not clear, not only at CWS but across the developmental disability service system, Moseley said.

To address the problem, the state Division of Developmental Disabilities (DDD) has articulated guiding principles and standards for integrated day services. Through the Sherlock Center at Rhode Island College, DDD also offers training in implementing successful strategies for integration, Moseley said, but he recommended the training be expanded.

Another, related problem is a mismatch between existing services for individuals and their long-range plans.

In a court-ordered review of individual records documenting current services and future plans, DDD found that in 58 percent of the cases, individuals’ ongoing activities didn’t necessarily help them achieve their goals, Zanchi told the judge.

As a result, DDD has taken steps to merge short-range and long-range planning into one streamlined and holistic process that encourages providers to think in terms of individualized services that can help develop skills and interests that will help a particular person realize long-term aspirations.  

In addition, Zanchi said, DDD has developed a separate written guide, or rubric, for reviewing the quality of these individualized plans.

Zanchi Praises 'Collective Vision'

Zanchi concluded that she is “confident that there continues to be many areas where progress is clear,” recognizing that “quality is still developing” in services available to adults with developmental disabilities.

Zanchi said the progress is the direct result of a “collective vision that is guiding the work and transforming services.”

“We are building a remarkable partnership with the true experts of the DD system,” she said, referring to consumers, families, providers, business partners, community advocates as well as DD and ORS staffers.

They are all “invested in this progress and are at our table to strengthen our system to achieve these outcomes,” Zanchi said.

Click here to read the monitor's report.

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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Therap Gets RI Contract For DD Electronic Records

By Gina Macris

Therap Services of Waterbury, CT., a specialized information technology company, has won a contract worth $1,320,000 over three years, or $440,000 a year, to create an electronic case management system for the Rhode Island Division of Developmental Disabilities (DDD).

The conversion to electronic records is expected to make record keeping much simpler for state social workers and private providers and to greatly improve data collection for the U.S. District Court. Through an independent monitor, the Court is tracking implementation of integrated, community-based services for adults with developmental disabilities under provisions of a 2014 consent decree enforcing the U.S. Supreme Court’s Olmstead decision, which reinforces the Americans With Disabilities Act.

Kerri Zanchi, Director of Developmental Disabilities, could not say exactly how long the new system will take to roll out but estimated it might be 18 months to two years before it is fully implemented. Some parts of the system might be operational earlier, she said.

The electronic case management system will give state social workers and private service providers shared online access to the records of each client receiving federal and state-funded Medicaid services through the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).  

Zanchi said Therap also offers a module to give families access to records, “but what it does and how we’ll use it, we’re not there yet. I couldn’t speak to that today,” she said in an interview in mid-September. A family module would not cost the state additional money, according to a spokeswoman for Zanchi.

Zanchi said DDD wants to build an electronic record system that responds to current operations and consent decree requirements.

“Our (DDD) system is changing and as it is changing we need to be evaluating the outcomes,” she said.

There is a work group which includes both state social workers and private service providers to help identify “the specific data needs” that must be built into the electronic records system, she said.

Rebecca Boss, the BHDDH director, said that “as much as we can do to expedite this, we will. We want to have this up and running as soon as possible.”

The lack of adequate data has made it difficult for the U.S. Department of Justice and the consent decree monitor to evaluate the state’s implementation efforts. About a year ago, the state devised an method of working around the limitations of the existing 30-year-old data system that can respond to specific questions from the monitor or the DOJ, but not on a real-time basis.

This patchwork approach enlists data collected quarterly by the Sherlock Center on Disabilities at Rhode Island College.

Therap and seven other vendors submitted applications for the electronic records contract in the fall of 2016. Zanchi and Boss said the contract was awarded at the end of the summer.

Therap also holds an electronic records contract for the investigatory unit of BHDDH, which deals with complaints of neglect and abuse. That contract was awarded in 2016, but no other details were immediately available.

Therap’s website describes the company as the leading provider of electronic health records for people with intellectual disabilities, with customers in 50 states and foreign countries.

This article has been updated with additional details on the Therap contract and those working with Therap to roll out the system. 

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

Deanne Gagne                                                                                                                                                                                                                                           all photos by anne peters

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

Zanchi           

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

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

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

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

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

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

Semonelli

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

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

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

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

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

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

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

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

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

Rosenbaum

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

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

“A year is not enough,” Rosenbaum said.

Zanchi said she will look into the problem.