RI DD Providers Seek Rate Hikes To Cope With Unprecedented Costs and Risks To Workers

By Gina Macris

Rhode Island’s providers of developmental disability services can expect help from state coffers as early as this week to compensate for losses resulting from the coronavirus, but those emergency payments are no more than the private organizations would have received if they had been able to conduct business as usual, according to the General Assembly’s chief advocate for people with disabilities.

The state’s developmental disability agency announced March 26 that $15.4 million has been set aside for up front “retainer payments” to private service providers over the next three months, including $7.4 million in state revenue and the rest in federal Medicaid funding.

State. Sen. Louis DiPalma, D-Middletown, says providers need more money, and a trade association representing them has asked for an hourly wage increase of $4.55 for caregivers of adults with developmental disabilities, who tend to be at greater risk than the average population for becoming infected with the coronavirus.

The hike, to an average wage of $17.73 an hour, would greatly narrow the pay gap between privately-employed direct care workers and those in state-run group homes, who now make a starting wage of $18.75, with state employee benefits, for the same work.

Meanwhile, the U.S. District Court in Rhode Island has become involved in discussions between state human services officials and the federal Medicaid program in an apparent effort to get federal relief for people and support staff in the developmental disabilities system, among other segments of the population that rely on Medicaid. The most concrete evidence of the Court’s involvement is an order issued by Chief Judge John J. McConnell, Jr. March 27 which seals “until further notice” seven draft documents having to do with the state’s Medicaid plan.

DiPalma, learning of the titles of the documents in the court order, said in a telephone interview that the news they were sealed surprised him, because the documents were shared among leaders in the developmental disabilities community for comment a week ago in lieu of a public hearing, given the unprecedented emergency of the COVID-19 pandemic and social distancing rules imposed by Governor Gina Raimondo.

The crisis threatens the viability of the private developmental disabilities system, which is the backbone of the state’s efforts to comply with a 2014 civil rights consent decree mandating integration of adults facing intellectual challenges in their communities. McConnell oversees implementation of the consent decree, which runs through 2024.

Daytime activities linked to compliance with the consent decree have shut down, and provider agencies have been forced to lay off staff because the employers can’t bill the state for the services. A spokeswoman for CPNRI, the trade association, could not immediately say how many layoffs have occurred.

Some agencies are estimating losses for the month of March up to $198,000, said the CPNRI spokeswoman, executive director Tina Spears. She said the losses are “destabilizing our ability to provide other critical services” throughout the crisis, with costs that exceed established funding levels.

Preliminary estimates from CPNRI members indicate their costs will exceed their annual budgets along a range from 2 percent to 20 percent, Spears said, although those figures will become clearer as each agency continues to track expenses.

On March 22, the Centers for Medicaid and Medicare Services loosened its rules, inviting states to apply for relief through a variety of variances, including rate increases and up-front emergency or “retainer payments.” “Retainer payments” is a federal Medicaid term.

Spears, the CPNRI director, submitted the request for the $4.55 wage increase March 25 to the state’s acting Medicaid Director, Benjamin Shaffer. Spears represents about two thirds of the three dozen agencies operating in Rhode Island, but she said any wage increase should apply to all developmental disability service providers, and to families who hire their own staff for loved ones. Spears said Pennsylvania’s retainer payments have built-in rate increases up to 40 percent, while Connecticut hiked rates for group homes and other residential settings by 25 percent in its retainer payments. Day programs in Connecticut will get another 5 percent in the retainer payments.

Layoffs of day program staff in Rhode Island will put a big strain on the unemployment insurance of the agencies, most of which are self-insured, Spears said. While income from day programs has stopped, agencies still have the same fixed costs, as well as new ones, as their focus shifts to respond to the threat of infection in group homes and other residential settings.

Existing fixed costs include rent, leases on vehicles used in programs, insurance, utilities, professional services, software, leases on office equipment, telephone and communications costs, and other expenses, she said. Unanticipated costs include:

• Employees taking time off under the federal Family Medical Leave Act, because of a need for childcare and other family situations, requiring agencies to maintain health insurance for them.

• Steeper costs for providing direct care to clients, because higher-paid staffers are needed to augment the efforts of regular front-line workers. These other employees include supervisors, managers, clinicians and nurses. • Added costs for aggressive cleaning protocols, involving more time from outside specialty contractors and more work done by agency employees. Providers also have scoured the market for hand sanitizer, personal protective equipment, and other supplies.

At the state’s Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), the outgoing Director of Developmental Disabilities, Kerri Zanchi, says she will stay on “for a little while longer” to support the coordination between operations and funding during the healthcare crisis. Kevin Savage, the new acting director, and Heather Mincey, who is in charge of division social workers, round out the division’s leadership.

RI Plans For Emergency Funding To Shore Up DD Providers After Community Calls For Help

By Gina Macris

Rhode Island Governor Gina Raimondo announced March 26 that the state will soon release a total of $15.4 million in state and federal Medicaid “retainer payments” to shore up private service providers facing unprecedented challenges in the coronavirus pandemic.

The announcement came hours after representatives of private service providers and a prominent advocacy group expressed anxiety about a heightened vulnerability of people with developmental disabilities to the disease and called on the governor to do more.

The retainer payments “are seen as essential to supporting our critical DD (developmental disability) partners, many of which had to cease services due to COVID 19,” a spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) said late in the afternoon.

BHDDH and the state’s Medicaid system, managed by the Executive Office of Health and Human Services, are working to make the funds available “as soon as possible,” the spokesman said. He said the retainer payments have been approved for a three-month period, with the first checks going out as early as next week.

Several hours before the announcement, spokesmen for the Community Provider Network of Rhode Island (CPNRI) and the Developmental Disabilities Council of Rhode Island issued a statement detailing the vulnerabilities of individuals with developmental disabilities and those who live and work with them.

“We need to act now to address the needs of our community, which we have identified repeatedly to the administration,” said Michael Andrade, President of CPNRI, a trade association of 24 private agencies licensed by the state to provide support and care for adults with developmental disabilities – including those in group homes.

Andrade said state testing priorities and emergency planning must include group homes and people in shared living, an arrangement in which adults with developmental disabilities live in private apartments or single-family houses with a host family.

Kevin Nerney, executive director of the Developmental Disabilities Council, agreed that testing, protective equipment, and other emergency measures “must be a priority” for vulnerable individuals and their caregivers.

“There is an obvious concern about spreading the virus by those receiving services and those who provide those services,” Nerney said.

“As people become sick, they may still require in-person services. We want to make sure it is possible to continue services when necessary, even for the sick,” Nerney said.

Those who care for people with developmental challenges must be considered “the essential health care workers that they are” and must be compensated appropriately during the crisis, Nerney said.

The BHDDH spokesman said later in the day that the administration has taken steps toward a declaration that those who work with persons with disabilities are “essential health care workers” necessary in the state’s emergency response to the virus.

The spokesman, Randal Edgar, said state human services officials have “escalated” the needs of developmental disability service providers for Personal Protective Equipment (PPE) to the Rhode Island Emergency Management Agency and are trying to expand the availability of interpreter services. Some direct care workers who provided daytime services have been re-assigned to residential programs, Edgar said.

About 4,000 Rhode Islanders with developmental disabilities receive services funded by BHDDH, including 1180 who live in group homes. Many adults with developmental disabilities face challenges in practicing good hygiene and social distancing and have underlying medical conditions that put their immune systems at greater risk than the average population.

Edgar said the governor, BHDDH and EOHHS “are committed to meeting the needs of the state’s most vulnerable residents. This pandemic is challenging our State and all Rhode Islanders, and we recognize that there is significant impact on individuals with disabilities, their families, and the direct care workforce who support them. We are working tirelessly to ensure that resources are in place to support residents with developmental disabilities as well as the providers who care for this population.”

In a televised afternoon briefing March 26, Raimondo said her goal is to develop the capacity to test 1,000 people a day in a week’s time, a pre-requisite in defining the spread of the coronavirus and informing the state’s efforts to contain it.

Rhode Island has about 5,000 workers in the developmental disabilities field, not counting family members who also provide care and support, according to CPNRI and Nerney.

Tina Spears, executive director of CPNRI, said in an email that providers are “extremely nervous” about infection among those in their care and about their ability and readiness to respond to such a scenario.

“We are deeply troubled by the lack of emergency planning,” she said in the email, sent early in the afternoon.

Providers are taking emergency measures independent of state government, but they need more support and resources, she said.

“We are equally concerned for family caregivers at home,” said. “If and when they become ill, we must be able to step in and support the family,” Spears said.

Most of the 4000 authorized to receive services from the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) live at home and receive daytime services from a private agency.

Of the total BHDDH caseload, about 700 individuals living at home also have service programs directed independently by their families. These families need flexibility to hire additional staff – including other family members – in an emergency, Nerney said in a separate letter to Raimondo that was signed by the leaders of several organizations serving the developmental disabilities population.

Spears, meanwhile, said that with daytime programs closed, agencies are unable to provide services to participants living in family homes on a broad scale because of a lack of authorization from the state.

She said providers were given the authorization to provide “tele-health” services, but “this is not helpful in most situations for the people we support.”

Some providers have reluctantly laid off staff, because they cannot afford to keep them, Spears said. The state’s fee-for-service system reimburses private agencies only after services are provided, usually in ratios of one worker to several clients. One-to-one services are more costly, and no adjustments have been made to authorize them on a broad scale, Spears said.

“We would prefer to be overstaffed at this point and be able to provide more support in the community. This has been our consistent goal,” Spears said.

After the BHDDH announcement, Spears said in a telephone interview that she was “heartened” by the news of the retainer payments but is awaiting additional detail. Spears said she hopes the payments cover pay increases for “our vital workers.”

Spears, Andrade, Nerney and others had asked Raimondo for emergency funding to help caregivers and providers weather the crisis. The privately-run system of services was already in precarious financial health before the crisis, according to consultants for BHDDH.

Nerney has urged Raimondo to follow the lead of the state of Connecticut, which continues to pay private service providers, raising rates.

As part of Connecticut’s emergency preparedness response, the state’s Department of Developmental Services has increased allocations to group home operators by 25 percent and has increased payments to providers of daytime programs by 5 percent, with the proviso that providers will not lay off workers.

The Connecticut advisory to developmental disability service providers was attached to a letter from Nerney to Raimondo dated March 23. It raised many of the same concerns as the CPNRI statement and and aired specific questions from families seeking guidance about details of the care of family members at home who have developmental disabilities.

In addition to Nerney, the letter was signed by Amy Grattan, Executive Director of the Sherlock Center on Disabilities; Deanne Gagne, Coordinator of the Cross Disability Coalition; Sam Salganik, Executive Director of the Rhode Island Parent Information Network; Deb Kney, Executive Director of Advocates in Action; Joanna Scocchi, Executive Director of the ARC Rhode Island Family Advocacy; and Ken Renaud, Coordinator of RI FORCE, a family advocacy group.

Judge Asks Olmstead Monitor To Confer With RI DD Community About Impact Of Coronavirus

By Gina Macris

Chief Judge John J. McConnell, Jr. of the U.S. District Court in Rhode Island has asked the independent monitor for a 2014 consent decree to advise him on ways the Court can respond to the needs of adults with developmental disabilities and their families and lessen the burden on the developmental disability service system in light of the COVID-19 public health crisis.

Recently, McConnell ordered the monitor, A. Anthony Antosh, to work with state officials, service providers, and the community to come up with a plan by August for implementing the civil rights consent decree, which requires an emphasis on jobs and integrated non-work activities in the community in accordance with the Olmstead decision of the U.S. Supreme Court.

But the latest order, issued March 18, asks Antosh to speak with the same groups of people, in part to “lessen the administrative burden on providers and the State.”

In its entirety, the order says: “Recognizing the difficulties posed to the families, providers, and the State by the public health crisis from the COVID-19, the Court requests that the Court Monitor engage in conversations with the State, providers, family advocates, and the DOJ to make recommendations to the Court on orders that could (1) lessen the administrative burden on providers and the State; (2) assist class members and their families in maneuvering the system and ensuring essential services; (3) any other recommendations the Court Monitor deems appropriate.”

In other news:

• The Department of Behavioral Healthcare, Developmental Disabilities and Hospitals shared a link for those who wish to sign up to get departmental bulletins via email. It is here: https://visitor.r20.constantcontact.com/manage/optin?v=001eqFath_w1XkYArH2x0GW8bc7GVDqsDyWPJIEAFzZva8gz_TPfL5twTJBMX31wroDseZVoKARm5p2-EIVxblCOz0_xHCYHhe-czFB5H3Zw4I%3D

• The Governor’s Commission on Disabilities has prepared a resource guide on the coronavirus, COVID-19. It can be found by clicking here .

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.

Antosh Resolves Dispute Between RI and DOJ On Compliance With 2013 Sheltered Workshop Case

By Gina Macris

Federal court monitor A. Anthony Antosh has forged a resolution to a long-simmering dispute between the U.S. Department of Justice and the state of Rhode Island over the state’s compliance in connection with two civil rights decrees aimed at finding jobs for adults with developmental disabilities and otherwise integrating them in their communities.

The Chief Judge of the U.S. District Court in Rhode Island announced that both the state and the DOJ have agreed to a detailed compliance road map crafted by Antosh in an order made public March 3.

In a separate order Feb. 28, the Chief Judge, John J. McConnell, Jr., announced he has elevated Antosh from interim to permanent status as monitor.

The judge’s March 3 order incorporated recommendations Antosh had previously submitted detailing the parameters for the state’s “substantial compliance” with a 2013 Interim Settlement Agreement (ISA), a total of 88 adults with developmental disabilities.

Antosh focused on 32 individuals who are either unemployed or working in non-competitive employment for a private developmental disability service provider. He enumerated a variety of services and supports which must be provided to these particular people, including new trial work experiences, more non-work activities in the community and a variety of specialized help to break down barriers like mobility issues, vision problems and behavioral challenges which hinder some people from getting around and looking for work.

Antosh extended the monitoring period from the ISA from July to December. To achieve compliance with the ISA, the state must show that 80 percent of the people in Antosh’s case studies are spending more time in the community, either for work or leisure. The ISA was originally scheduled to end July 1.

Antosh also said the existing funding does not go far enough, nor does it have the flexibility to meet the individual needs and preferences of persons protected by ISA, and by implication, a broader 2014 consent decree with a statewide reach.

The ISA and the statewide decree of 2014 both draw their authority from the Integration Mandate of the Americans With Disabilities Act, reinforced by the Olmstead decision of the U.S. Supreme Court.

In addition to requiring funding for specific services, consultations and technology on a person-by-person level, Antosh called for a re-calculation of the state’s existing funding mechanism for reimbursing private providers working with adults facing intellectual challenges.

While such a review is well underway and is expected to wrap up in June, it appears that the earliest the General Assembly would be able to enact any significant changes to the existing funding model would be in 2021, when the statewide consent decree will be in the seventh year of a ten-year enforcement period.

Most, if not all, of the 88 persons protected by the ISA are former students of the Birch Academy at Mount Pleasant High School in Providence. Many of them were funneled from Birch to a now-defunct sheltered workshop called Training Through Placement in nearby North Providence.

In introducing his study of the unemployed ISA population, Antosh noted that most of the people he interviewed could not answer his questions about their interests, the jobs held by relatives or friends, or if there was any kind of work they would like to try.

The answers provided evidence that these individuals had had limited life experiences, “one of the most common characteristics associated with individuals who have an intellectual disability,” Antosh said.

He said that “people do not choose what they do not know about,” which means that the individualized, or “person-centered” process of planning for job searches and other activities is not meaningful unless the person has had a “sufficient number of experiences of sufficient duration.”

This rationale underscored a requirement that each of the currently-unemployed persons have one or two trial work experiences, depending on whether they had previously had any community-based jobs, and that the state find the money to add the supports for these activities.

Since last July, the state had maintained that, because it has policies, practices and resources in place to satisfy the requirements of the 2013 ISA, it had met the compliance standards of the agreement, even if some of the 88 individuals in the protected class didn’t actually have jobs in the community as required.

But Antosh disagreed. He said that because the ISA population is “so small and so focused, the question of substantial compliance is about whether each and every individual has received supported employment services” and other necessary assistance.

Antosh said his study could not find any evidence the state is complying with one overarching requirement in the ISA, that it provide services for a total of 40 hours a week, including work and non-work activities in the community. The same requirement carries through to the statewide consent decree of 2014.

The state had said, in effect, that its best efforts to find jobs for the ISA population satisfied the requirements of the interim agreement, even though 15 former Birch students had never been employed outside of a sheltered workshop. The state has pledged to continue working with these persons.

But Antosh analyzed the barriers to employment listed by the state in these cases and made recommendation for ways the state can mitigate them:

For example, the state should provide:

• Up-to-date communications technology for people who have difficulty expressing themselves verbally

• Consultations with physical or occupational therapists for people who could benefit from better wheelchairs or other strategies for positioning their bodies.

• Access to tablets and other technology for those who want to do job searches or just stay in touch with the activities occurring in their communities.

• Assistance to service providers to develop strategies for reinforcing positive behavior for those who struggle with behavioral challenges. He said he found no evidence that these strategies were being used with the people who need them.

• Opportunities for conversations between families of persons with developmental disabilities who have had experience with supported employment and those who are resistant to the idea. Antosh said those who are resistant have expressed a willingness to listen to other families.

As for the state’s role in job searches, Antosh prescribed an approach similar to the “Real Jobs” strategies used by the state Department of Labor and Training, which starts with a survey of the needs in the business community and then tries to match individual interests and aptitudes with those openings, offering training to prepare potential job applicants.

The state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has indicated it is close to announcing the third iteration of a targeted supported employment program that will focus on some 200 adults with developmental disabilities who have never had regular jobs. It is not clear whether the plans for the newest version of the so-called Person-Centered Supported Employment Performance Program will correspond to Antosh’s approach, which is now required by the Court.

Antosh plans to track increases in jobs and community activities during reviews in May and November to determine if the required services are in place for each person and whether there is a positive change in their engagement with the community.

Assuming that the state achieves compliance in December, there would be another year’s probation, through the end of 2021.

Antosh does not expect everyone who is either unemployed or not competitively employed to have a job in short order. In his report, he estimated that 9 of the 32 people on his list can be employed in a year’s time and that another two can find jobs within two years.

New RI BHDDH Director Cancels Plan For "Health Home" Case Management Model

By Gina Macris

This article has been corrected and updated.

A costly and controversial proposal for privatizing the management of individualized services for adults with developmental disabilities in Rhode Island has been axed by the new director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

The director, A. Kathryn Power, acted out of concern that the state would face a “financial cliff” after an initial start-up period almost entirely funded by the federal Medicaid program, according to a BHDDH spokesman.

The managed care initiative, which Medicaid has labeled a Health Home, would have created a third-party entity to plan, coordinate and monitor services on a person-by-person basis.

“Director Power was concerned whether the Health Homes initiative represented the right direction for consumers and families, as well as the Department, given the temporary nature of the federal funding,” said the spokesman, Randal Edgar.

The Medicaid program offers 90 percent federal funding Health Homes for two years, but after that, the state would be responsible for nearly half the cost of maintaining the Health Home. On Feb. 28, a BHDDH spokesman said that long-term, the Health Home would have cost the state about $5 million a year.

Throughout the past year, the Division of Developmental Disabilities “conducted extensive stakeholder engagement around the design” of a Health Home for adults with intellectual or developmental disabilities, the spokesman said. “The scope and the projected enrollments were then used to guide the proposed rate methodology and cost analysis,” resulting in future costs estimated at about $5 million, the spokesman said. (It was incorrectly stated in an earlier version of this article that BHDDH had not calculated the long-term dollar amount that the state would have borne before Power cancelled the plans for a Health Home application.)

Power had been aware of community opposition to the Health Home idea. That factor, “coupled with her own experience of looking at the integrated health home model, led her to question the viability of this initiative,” Edgar said. Power returned to BHDDH after about 15 years in the federal Substance Abuse and Mental Health Services Administration (SAMHSA).

She said BHDDH will continue to pursue a case management model to satisfy a Medicaid rule that states eliminate conflicts of interest in three functions:

• funding

• delivery of services

• case-management; the planning,coordination, and oversight of supports.

Currently the state controls a critical element of the planning phase, an assessment called the Supports Intensity Scale (SIS.). The score from the SIS is fed into a secret algorithm that determines funding for a particular person,

The SIS was designed by the American Association on Intellectual and Developmental Disabilities to assist planners in compiling a program of services meeting the needs and preferences of particular individuals, an approach compatible with the Integration Mandate of the Americans With Disabilities Act. The Mandate, reinforced by the Olmstead decision of the U.S. Supreme Court, says that individuals with disabilities have the right to services and supports they need to live, work, and play in their communities.

Using the SIS to determine individual appropriations resulted in a cookie –cutter approach that incentivized a system of sheltered workshops and day care centers when it was begun in 2011 as a key feature of Project Sustainability, a fee-for-service reimbursement system for privately-run developmental disability services.

Two years later, the operations of one of those workshops attracted a civil rights investigation from the U.S. Department of Justice that has led to federal oversight of the developmental disability service system until 2024. The key goal: to correct violations of the ADA’s integration mandate.

The Health Home proposal would not have touched the link between funding and the SIS, which was singled out for criticism by the DOJ in 2014 findings that led to a statewide consent decree.

Opposition to Health Homes has come from the special legislative commission which recently concluded a study of Project Sustainability, the Developmental Disability Council, the Community Provider Network of Rhode Island, and many families also have raised concerns about the Health Home.

In general, the critics have said a Health Home would have created an expensive and unnecessary bureaucracy at the same time that the services themselves are underfunded. .

The wages of direct care workers and related staff remain below the levels offered by Connecticut and Massachusetts for the same work, generating high turnover. The agencies employing the workers teeter on the edge of solvency, according to a recently released report compiled by BHDDH consultants. Families who manage a loved one’s program themselves also have had trouble finding staff.

RI: Private DD Agencies Show “Concerning Level Of Financial Vulnerability,” Consultants Say

By Gina Macris

Many of the private agencies serving adults with developmental disabilities in Rhode Island teeter so close to the fiscal edge that they need cash advances from the state to keep their doors open from one year to the next.

“It is evident that the advance payments made by BHDDH constitute a crucial lifeline for many of the agencies,” said consultants to the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals.

A review of nearly three quarters of the state’s payments to private developmental disability service agencies showed that all but two among a representative sample of 16 large, mid-sized, and small organizations fall below a nationwide standard for financial health, the consultants said.

The consultants, working under the auspices of the New England States Consortium Systems Organization (NESCSO), were hired to expand the analytical capacity of BHDDH in reviewing the rates and payment structure for the privately-run developmental disability system.

While it is outside NESCSO’s scope to make specific recommendations, the consultants nevertheless concluded that there is a “concerning level of financial vulnerability for a substantial portion” of the private system, the backbone of state-funded developmental disability services.

The financial review represented some of the interim findings in an 18-month, $1.3 million contract between NESCSO and BHDDH that concludes at the end of June.

The report appears to be incorporated in an addendum to the BHDDH budget request for an additional $4 million in federal-state Medicaid funding beginning July 1 to help provide incentives for advancement to front-line workers by raising the salaries of supervisors, support coordinators, job developers and professionals an average of 8.2 percent. Direct care workers also would receive an additional 10 cents an hour.

The governor adopted the language of the BHDDH proposal “to provide an investment in the overall human resource infrastructure” of the provider network for adults with developmental disabilities. She nevertheless cut the $4 million request to $2.2 million. That recommendation includes $1 million in state funding and the remainder in matching federal Medicaid funds.

The raises are offset by $2.2 million in savings from caseload figures that the governor’s office says showed slower growth than BHDDH projected. The budget office projected a 1.5 percent caseload growth for the next fiscal year, or one percentage point less than BHDDH estimated.

The NESCSO fiscal report, meanwhile, said 71 percent of all BHDDH payments for privately-run services to adults with developmental disabilities went to 16 of the 39 agencies licensed to operate in the state. For the analysis, the agencies offered a total of 27 audited financial statements, some for 2018 alone and others for 2017 and 2018.

Of the 27 audit reports from those two fiscal years, 15 showed operating losses and 6 showed surpluses between 1 and 2 percent, according to NESCSO. Only 6 reports showed healthy income margins of 3 percent or more, prompting the consultants to comment on the “concerning level of vulnerability” for the system as a whole. The consultants noted that the audits covered all operations for the respective agencies and were not structured to allow a more detailed analysis of only those activities supported by BHDDH funding.

To the extent that agencies use other sources of income to subsidize developmental disability services, the providers themselves may feel that the analysis “does not fully represent the fiscal challenges of serving the I/DD (intellectual and developmental disability) population,” the consultants wrote.

The NESCO report analyzed two other indicators of financial health:

• liquidity, or the ease with which assets can be converted to cash

• solvency, or the ratio of assets to liabilities.

All but two agencies fell below the liquidity level considered healthy by the NonProfit Finance Fund, according to the consultants.

NESCSO used two measures to calculate liquidity:

• the number of months of cash on hand, with two agencies meeting the standard of three months or more

• working capital, which calculated as current assets minus current liabilities and then further refined to determine how many months of operational costs the working capital could cover. Three agencies met this standard.

The NESCSO consultants added that advance payments from the state, which show up on audits as liabilities, in effect function as sources of operating cash and working capital for the agencies. The report did not say how many agencies have received such payments, nor did BHDDH respond to a request for clarification.

The consultants’ report included a financial note they said was found in many audited statements. It reads:

“This amount represents approximately 45 days of funding for operating the residential and day programs. This amount is due to the State of Rhode Island if the company ceases operation of a residential or day program within the scope of the original advance funding agreement or if it is no longer licensed or certified to provide serves (services) to individuals with developmental disabilities. During 2017, the State of Rhode Island requested payment of these funds prior to the end of the fiscal year at which time additional funds were provided to the Company/Agency.”

Another way the state subsidizes the agencies’ operations is leasing properties to them for nominal amounts, the consultants said.

Although 17 of 27 agency audit reports showed assets that were two times greater than liabilities, the organizations are more vulnerable than those figures might indicate on their face, the consultants said, because a “critical portion” of the assets are property and equipment “intertwined in daily operations,” like group homes.

As an example, the NESCSO’s consultants cited the case of one agency, Bridges, Inc, The agency had assets that exceeded liabilities but also faced a second consecutive year of losses from operations in 2017. In that case, Bridges closed its doors in 20017 but transferred its entire business to Looking Upwards, another agency.

“That approach likely preserved capacity within the system but highlights the risk of loss of overall provider capacity,” the consultants wrote.

Judge Calls For Plan To Overcome Barriers In Implementing RI Olmstead Consent Decree

By Gina Macris

The Chief Judge of the U.S. District Court in Rhode Island has ordered an independent monitor to bring him a new plan for implementing a 2014 civil rights agreement that seeks to integrate people with developmental disabilities in work and leisure activities in their communities by 2024.

With the state falling short of its job-placement goals in two of three categories in 2019, as well as other developments in recent months, indicators are mounting that the current approach isn’t working.

In an order issued Feb. 3, Judge John J. McConnell, Jr. has charged the interim court monitor with gathering a wide range of data and information from multiple sources, including comments from people with developmental disabilities, their families and representatives of the community, as a baseline for discussions on the way forward.

McConnell gave the monitor, A. Anthony Antosh, until April 30 to complete the information-gathering process and until August 30 to complete the plan, in collaboration with the U.S. Department of Justice, state officials and community representatives who serve on the Employment First Task Force, a committee created by the consent decree as an advisory group to government.

The judge went so far as to specify what agencies and officials Antosh should seek out, including “any interested legislators re: consent decree policies and funding.”

The process appears poised to capture the recent recommendations of a special legislative commission on the state’s fee-for-service funding system, as well as an ongoing rate review being conducted by outside consultants at the behest of the state Department of Behavioral Healthcare, Developmental Disabilities, and Hospitals.

McConnell said he wants Antosh to identify:

• Policies, activities and funding needed to achieve substantial compliance by 2024

• Obstacles and barriers to full implementation

• Service gaps that might hinder full implementation

• Structural components for a compliance plan

• Criteria for substantial compliance

The standards for compliance have become a matter of debate between lawyers for the DOJ and the state in the context of a prototype for the 2014 consent decree, the so-called Interim Settlement Agreement (ISA) of 2013, which affects about 88 former sheltered workshop employees who once attended the Birch Academy at Mount Pleasant High School and later worked at the now-defunct Training Through Placement.

The city of Providence was released from federal oversight in connection with the ISA last September in unusually celebratory courtroom proceedings, with accolades from all sides on the way it has changed the culture at the Birch Academy and turned around the lives of students.

But the performance of the state on implementing the ISA has not received such rosy reviews, an indication it is struggling with the consent decree as well.

In the ISA, the city and its school department have been responsible for opening the doors to integration through inclusive classes and internship programs, while the state has been charged with picking up where the educational system leaves off, to match individuals with jobs and help them participate in activities of their choice in the community. The state’s role in the ISA mirrors its relationship to school departments throughout Rhode Island in the consent decree, except on a broader scale.

Statewide, the number of adults with developmental disabilities who s must be offered employment by 2024 currently totals 1,987, according to the state’s latest consent decree data. That number is a little more than half the population protected by the consent decree.

After five years and nine months of the decade-long enforcement period of the consent decree, a total of 894 people, or 45 percent of the target number, have landed jobs, the state said in a report that captures progress through December 31, 2019.

The state exceeded the cumulative goal for employment in 2019 by more than 100, but missed targets in two subgroups, named “youth exit” and “sheltered workshop,” labels chosen to reflect whether individuals were young adults who had recently left school or working in enclaves at the time the consent decree was signed.

The state has never met the job targets for the “youth exit” group, which also represents the segment of the population that is applying for adult services for the first time, often from agencies that are hard-pressed to meet the needs of existing clients, let alone take on new ones.

In a third group labeled “day program” to describe those in day care centers in 2014, the number of new jobs recorded through 2019 rose to 385, or 160 over the goal, enough to overcome the shortfall in the other two categories.

But the the pace of new jobs has slowed. There were only 14 new job placements statewide for the last quarter of 2019 and 74 for the entire year. The remainder of the new jobs were recorded in previous years.

State of RI graphic representation of cumulative employment totals by quarter in 2019 under terms of Consent Decree

State of RI table of cumulative employment totals, by quarter, in 2018 and 2019 under terms of Consent Decree

One group not counted in the target population for employment is “youth in transition,” a total of 1,201 high school students with developmental disabilities, or 32 percent of the entire class protected by the consent decree. Many of them are expected to enter the labor market in the next several years.

Last fall, within the limited scope of the ISA, Antosh’ predecessor as court monitor, Charles Moseley, found that the state has made considerable progress in improving the lives of former Birch students – but not enough to warrant the end of federal oversight.

McConnell asked Antosh to review materials developed by Moseley, which include a 70-page exhaustive assessment of the state’s performance in meeting dozens of specific standards in the ISA.

In a draft report, obtained by Developmental Disability News, Moseley said the state has made considerable progress in changing the lives of the nearly 90 people still protected by the ISA, – but not enough. He completed the report at the end of September.

Moseley said the state fell short in several key areas:

• The number of people it had connected with jobs

• The number of hours logged by the job holders, some of whom said they wanted to work more

• The degree to which non-work activities in the community promoted interactions with non-disabled people

• The specificity and sense of purpose in the written short-range and long-term goals and supports that are supposed to fit together in a cohesive career development plan tailored to the individual

In a notice to Judge McConnell submitted in late December, the DOJ said that while the state “made initial progress in implementing the Agreement’s provisions, recent monitoring has showed that the state’s efforts have stalled such that it may not independently act to achieve the requisite outcomes before the Agreement ends.”

In its reply, the state acknowledged that it had not found jobs for 15 members of the protected class but said the barriers included health and behavioral problems, family resistance, and other issues.

The agreement itself says that “substantial compliance is achieved where the State and City have implemented all of the provisions of the Interim Settlement Agreement for all individuals in the Target Populations.”

In the context of that language, the state lawyers maintained that implementation means it has “mechanisms and/or policies” in place to carry out any of the specific requirements of the agreement, whether or not a particular numerical target is reached, as long as the “Court is satisfied that the State is on track to reasonably reach the requirement.”

Those who don’t want jobs can file for an exception, or variance, with the monitor, but Moseley said he had not received any such requests from the 87 members of the protected class. The state’s lawyers said officials wanted to keep working with the 15 unemployed persons rather than have them opt out of the search for employment.

Moseley’s report goes into great detail in evaluating the state’s performance on dozens of standards, many of them bureaucratic, that are nevertheless important for creating a high quality system of social services designed to sustain itself after the consent decree is long gone.

Among other things, the standards cover multiple aspects of:

• quality improvement

• detailed data collection

• benefits counseling for job seekers so that they know how earned income will affect their government disability payments, if at all

• the clear communication of each person’s short-term and long-term objectives in detailed career development plans

• staff training

In several areas, Moseley said he did not find enough documentation or evidence to make an assessment, although the state says it has supporting materials to show it has met the standards in question.

For example, Moseley said he didn’t have enough information to determine whether the state is following proven, or “evidence-based”, practices in its approach to employment supports for adults with developmental disabilities.

He also said the state hadn’t given him enough documentation to show whether the private agencies delivering services have the wherewithal, or capacity, to serve adults with developmental disabilities as required by the ISA.

Both Moseley and Antosh are experts in the research on supporting adults with developmental disabilities.

Antosh wrote the proposal that established the federally-funded Sherlock Center on Disabilities at Rhode Island College and served as its director from its inception in in 1993 until October, 2019.

Moseley, a former director of Vermont’s developmental disability system, worked as a top official in the national association of state developmental disability directors before he became the court monitor. Moseley stepped down for health reasons at the end of September.

RI Governor Proposes Privatizing State-Run Group Homes In Fiscal 2021

By Gina Macris

Governor Gina Raimondo plans to privatize the state-run group home system in the next budget, cutting 204 fulltime positions from the state payroll during the 2021 fiscal year, which begins July 1.

The privatization is one of many cost-cutting moves Raimondo has proposed to address an overall $200 million structural deficit in a $10.2 billion spending plan, which she submitted to the General Assembly Jan. 16.

The budget emphasizes investments in continued economic growth, education, affordable housing and healthcare; hitting the same notes Raimondo covered in her State of the State address two days earlier.

Within the Division of Developmental Disabilities, the privatization would directly affect about 125 residents of homes run by the state. Details about the transition were not immediately available.

The residents of the state-run group homes represent a small fraction of the 3,835 adults with intellectual challenges who receive state-funded services. Most of these adults are supported by private-sector workers, who would receive a modest 10-cent hourly raise in Raimondo’s budget proposal.

Supervisors in the private sector also would receive proportionate pay increases, budget officials said during a press briefing several hours before the Governor submitted her plan to the legislature.

Few other details were immediately available about changes in funding for the Division of Developmental Disabilities, part of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH.)

Raimondo would put a total of $487.1 million into BHDDH in the next fiscal year, an increase of more than $20 million from the current funding level.

The private system of developmental disability services, now budgeted at $268.7 million, is projected to spend about $4 million less than that total by June 30, according to a budget briefing book. Funding for the fiscal year beginning July 1 would be $290.3 million, but not all of it would go to direct services.

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 Project Sustainability Commission To Meet Jan. 14 To Wrap Up Recommendations

By Gina Macris

The special legislative commission studying the way Rhode Island pays for developmental disability services will hold its final meeting Jan. 14 to summarize some 70 recommendations that have been submitted by the commission’s 21 members, according to its chairman, State Sen. Louis DiPalma, D-Middletown.

The panel, which began its deliberations during the fall of 2018, has been dubbed the Project Sustainability Commission after the name of the fee-for-service reimbursement system for private agencies that deliver most state-funded social services to some 4,000 adults with developmental disabilities.

Project Sustainability, enacted by the General Assembly in 2011, has been widely criticized by service providers and families as an excuse to cut funding.

Project Sustainability is under review by the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, which has hired outside consultants to expand its analytical capabilities. The review, expected to conclude in June, is separate from the commission.

The commission meeting on Jan. 14 will begin at 2:30 p.m. in the Senate Lounge of the State House.

DOJ, RI Ask Judge To Settle Major Dispute Over Compliance With ADA Integration Mandate

By Gina Macris

A dispute has arisen between Rhode Island and the federal government over a key phrase in two court-approved agreements which require the state to provide people with developmental disabilities full access to jobs and community activities.

Both sides have asked U.S. District Court Chief Judge John J. McConnell, Jr. to rule soon on what it means for the state to achieve “substantial compliance” with two companion civil rights decrees signed in 2013 and 2014.

The details of the dispute focus on the first of the two agreements, which is scheduled to expire in six months – July 1,2020 – and is known as the Interim Settlement Agreement (ISA).

This agreement applies only to students and former students of the Birch Academy, a developmental disabilities program at Mount Pleasant High School in Providence which once served as a feeder for a now-defunct sheltered workshop in North Providence called Training Through Placement (TTP).

The ISA sought to resolve a finding by the U.S. Department of Justice (DOJ) that large-scale segregation of developmentally disabled youth and adults at Birch and TTP violated the Integration Mandate of the Americans with Disabilities Act (ADA). The matter became the nation’s first “sheltered workshop” settlement.

How McConnell decides to define “substantial compliance” in the context of the ISA will also impact the broader 2014 consent decree, intended to protect all Rhode Island youth and adults with developmental disabilities from a lifetime of day care or low-paying piecework.

In the ISA, both the state and the city of Providence were defendants until late September, when McConnell ended federal oversight of the city. He received glowing reports of a transformed Birch Academy, which today sends students to productive internships that broaden their experiences and sometimes result in regular jobs.

But the state still has detailed obligations under provisions of the 2013 agreement to help former Birch students and former TTP workers find jobs.

On Dec. 23, the DOJ notified McConnell that “it disputes that the state will be in substantial compliance with the Agreement” by July 1 “without a course-correcting change in the State’s approach to compliance.”

The DOJ asked the judge to direct the interim court monitor, A. Anthony Antosh, to “begin working with the State immediately to develop and implement a plan for completing the (2013) Agreement’s highly achievable remaining outcomes and schedule a status conference with the Parties in January 2020 to address next steps.”

A week later, on Dec. 30, lawyers for the state challenged the DOJ, saying the federal government has not documented its specific objections or offered a “clear working definition” of substantial compliance for either the 2013 or 2014 agreements.

The state is already working with Antosh on a definition of substantial compliance, its lawyers said. The lawyers, Marc DeSisto and Kathleen A. Hilton, asked for a formal hearing in January on the issue of substantial compliance, rather than the informal status conference requested by the DOJ.

DeSisto and Hilton said they would be prepared to submit evidence and sworn testimony that the state is meeting its responsibilities under the terms of the ISA.

The agreement itself says only that “substantial compliance is achieved when the state and the city have implemented all of the provisions of the Interim Settlement Agreement for all individuals in the target populations.”

DeSisto and Hilton wrote that “in this context, ‘implement’ means that there are mechanisms and/or policies put into effect of sufficient means to carry out its (the state’s) requirements of the particular benchmark at issue.”

For example, there remain 15 individuals protected by the ISA who have employment goals but have never been employed in the community, DeSisto and Hilton said. The reasons include poor health or challenging behavior, family resistance, legal or forensic issues with the individuals, or extended absences from service programs.

(The state’s memorandum did not specify the total number of persons counted in the ISA, but past reports from the state and the independent court monitor put the total at a maximum of about 125, with fluctuations over time.)

The state could have requested “variances” to exempt these 15 individuals from employment and remove them from the ISA caseload, the lawyers said, but officials have no interest in pursuing this route.

Instead, the state wants to meet the individuals’ needs, “where they are at this time, and (work) on an individualized basis, towards the ultimate goal of employment,” DeSisto and Hilton wrote. They said the state has ”competence” to meet the employment goals, whether or not those goals are actually reached, suggesting that this “competence” demonstrates substantial compliance.

DeSisto and Hilton asserted that the state has achieved full compliance in 52 provisions of the ISA and substantial compliance in the remaining three provisions. But their memorandum to the judge does not describe those respective provisions.

The memo also referred to findings of the previous court monitor, Charles Moseley, who in August assessed the city’s compliance with the agreement but left the state’s compliance with numerous provisions “to be determined.”

DeSisto and Hilton indicated that Moseley followed up on his findings regarding state compliance in an Oct. 1 email with a new report attached. The lawyers included what appears to be an index of Moseley’s findings in three categories; substantial compliance, noncompliance, and “to be determined”, but they did not include the Oct. 1 report itself. Nor does that report appear separately in the court file.

A. Kathryn Power To Lead RI BHDDH

A. Kathryn Power

Rhode Island Governor Gina Raimondo and her Health and Human Services Secretary have tapped A. Kathryn Power, a veteran administrator of mental and behavioral health initiatives at both the state and federal level, to direct the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) – for the second time.

Power led the agency formerly known as the Department of Mental Health, Retardation and Hospitals during the administrations of former governors Bruce Sundlun and Lincoln Almond, from 1993 to 2003.

Known as a staunch consumer and family advocate wherever she has gone, Power left state government to become director of the federal Center for Mental Health Services, a part of the Substance Abuse and Mental Health Services Administration (SAMHSA).

In the last 15 years, she also has served as SAMHSA’s Region One director, providing authoritative advice and assistance on behavioral health policies and innovations to inform the financing and delivery of prevention, treatment, and recovery services.

Raimondo said she was “thrilled that (Power) has agreed to once again assume leadership of BHDDH and I look forward to continuing to work together as we improve outcomes for all Rhode Islanders who live with behavioral health challenges and developmental disabilities.”

“Rhode Island is fortunate to have someone of Kathryn’s stature – possessing such a high level of expertise in behavioral healthcare and developmental disabilities – stepping into this vital position,” said Womazetta Jones, Secretary of the Executive Office of Health and Human Services.

Power said in a statement, “I’m thankful to Governor Raimondo and Secretary Jones for the opportunity to contribute to our state’s evolving system of care for individuals facing behavioral health conditions and developmental disabilities.”

“Our state has made significant progress over the last few decades, but we have more work to do to ensure that all Rhode Islanders have access to the care and support they need on their paths toward recovery and community integration.”

As BHDDH director, Power will oversee a troubled hospital system, developmental disability services in the midst of a ten-year overhaul under federal oversight, and behavioral healthcare issues that include the state’s response to the opioid crisis that permeates communities nationwide.

Power succeeds Rebecca Boss, who is stepping down Dec. 31.

Except for her fifteen years in the federal government, Power has worked in the mental health field in Rhode Island for most of her life.

In addition to having served once as director of BHDDH, she is a former director of the Rhode Island Office of Substance Abuse, the Governor’s Drug Program, and the Rhode Island Anti-Drug Coalition. From l985 to l990, Power served as Executive Director of the Rhode Island Council of Community Mental Health Centers.

She has served as President of the National Association of State Mental Health Program Directors and has received many awards for her work in mental health, substance abuse and civic leadership, as well as recognition for her advocacy on behalf of people with disabilities.

Power received her bachelor’s degree in education from St. Joseph’s College in Maryland, and her master’s degree in education and counseling from Western Maryland College. She is a graduate of the Toll Fellowship program in leadership training of the Council of State.Governments and another program in senior executive leadership at Harvard University’s Kennedy School of Government. Power is also a retired Captain in the U.S. Navy Reserve.

New Olmstead Consent Decree Monitor Wants Reality Check On RI DD System Transformation

A. Anthony Antosh * Photo By Anne Peters

By Gina Macris

As the new federal monitor of a 2014 civil rights consent decree affecting Rhode Islanders with developmental disabilities, A. Anthony Antosh wants to get a reality check on where reform efforts now stand and to create a road map for what remains to be done to enable people to live inclusive lives, in accordance with the U.S. Supreme Court’s Olmstead Decision on the Integration Mandate of the Americans With Disabilities Act.

Antosh’s vision, which parallels the requirements of the consent decree is that:

• Adults with developmental disabilities who once spent their days in sheltered workshops or day care centers will have a chance to work at regular jobs and will be able to do whatever non-work activities they want in the community- with the needed supports.

• Teenagers and those in their early twenties still in school, who are also protected by the consent decree, will get the services they need to make a smooth transition to the world of work and adulthood.

The process for assessing how far the state has moved toward inclusion includes not only a look at the state’s compliance with the consent decree’s prescribed goals, or “benchmarks,” but at the impact on the people’s lives as well, Antosh said.

For example, the state’s “Person-Centered Supported Employment Performance Program” tries to boost the number of people who get hired to bring the state into compliance with target job numbers specified in the consent decree. Antosh says he wants to find out if meeting those target employment numbers also means that everyone who wants to work has a chance to get a job.

Antosh outlined his vision at a Dec. 17 meeting in Warwick with the Employment First Task Force (EFTF), a community-based committee empowered by the consent decree to serve as an advisory group to state government and federal officials.

After his appointment as monitor by U.S. District Court Judge John J. McConnell, Jr., Antosh said, “a lot of people wanted to give me advice but lots of people felt their voices had not been heard. I want them to be heard.”

Antosh said he can’t process calls and emails from all of the thousands of Rhode Islanders with a stake in developmental disability services, but over the next couple of months he wants to hear from as many people as possible.

He turned to EFTF to help him collect and analyze the information in the next few months because its 15 members have broad and deep connections to the various constituencies with a connection to the developmental disability service system as consumers, families or professionals.

The EFTF membership represents non-profit organizations like the RI Developmental Disabilities Council, the Sherlock Center on Disabilities at Rhode Island College, Advocates in Action, Disability Rights Rhode Island, and includes a delegate from the state’s special education directors, the leaders of a statewide developmental disability professional organization, family members with ties to advocacy groups, service providers and adults who themselves receive state supports.

In the next two months, Antosh said, he wants the EFTF members to ask these questions of their constituencies:

• Has life improved as a result of the consent decree reforms already in place?

• What changes must yet be made?

• What will a transformed system look like to them?

Right now, Antosh said, he could go around a room and get a different answer from everyone on “where we are now.”

“I want many data points to know it has changed,” said Antosh, drawing on his background as a researcher and educator in developmental disability and special education issues. Antosh was the original director of the Sherlock Center at Rhode Island College, serving from 1993 until two months ago (check.)

Early in his career, he was one of the plaintiffs the lawsuit that forced the state to close its institution for people with disabilities, the Ladd School. It was shuttered in 1994. And the judge who now presides over the consent decree case, John J. McConnell, Jr., was a young lawyer who represented the plaintiffs in the Ladd school suit, Antosh among them.

Antosh said he has consulted with McConnell on his grass roots, fact-gathering approach. He said he will “do nothing without consultation with the judge.”

McConnell appointed Antosh interim court monitor November 25 to end a stalemate of more than four months between the state and the U.S. Department of Justice on the selection of a replacement to the original consent decree monitor, Charles Moseley, who stepped down for health reasons.

At the EFTF meeting, Antosh, now entering his 51st year in the disabilities field, outlined some of his core beliefs:

• Equity. If an opportunity is available to one, it should be available to all, he said.

• Policy backed by research. He said he has seen well intentioned people putting forward well-intentioned policies which have no impact on people’s lives because there’s no research or evidence to indicate they will work.

• Individualization. Antosh said he has seen many plans for an individualized program of services with information on the goals but no steps outlined on how those goals should be reached. “I believe in real plans,” he said.

• Individual control. People with developmental disabilities and their families can spend their allocation much better if they control it, Antosh said.

Overall, Antosh signaled that he wants flexibility in the system to enable the individualization that is at the heart of the consent decree. “I struggle with rigid anything,” he said.

Rebecca Boss, Director Of RI BHDDH, To Step Down Dec. 31

By Gina Macris

Rebecca Boss * Photo By Anne Peters

Rebecca Boss, Director of the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) for three and a half years, will step down at the end of this month - in three weeks - to pursue “new opportunities,” according to a departmental announcement December 11.

As director, Boss has supervised the state’s services for adults with developmental disabilities, mental illness, and substance abuse disorders. She has brought stability and effective leadership to the Division of Developmental Disabilities, becoming actively engaged in implementing a 2014 Olmstead federal civil rights consent decree, which calls for a transformation of daytime services for some 4,000 adults with developmental disabilities over a 10-year period.

During her tenure, Rhode Island has emerged as a national model for its response to the opioid crisis, and BHDDH has begun a campaign to combat the stigma of mental illness and substance. But correcting chronic shortcomings at the state hospital has proved problematic. Early in Boss’ tenure, the Eleanor Slater Hospital in Cranston nearly lost its accreditation. And last month, state and federal inspectors found widespread deficiencies in standards of care at the Zambarano unit of the hospital in Burrillville.

In a statement, Boss said, “I have truly enjoyed the 15 years I have spent at the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals serving some of Rhode Island’s most vulnerable individuals.”

“I’m grateful for the opportunity I’ve had to work for the Governor and the people of this state. We’ve built an amazing team of compassionate staff who are dedicated and committed to this work,” she said.

Boss, previously the department’s top official in behavioral healthcare, became acting director in mid- 2016, succeeding Maria Montanaro, and was confirmed by the Senate in May, 2017.

Governor Raimondo said, “Becky Boss is a dedicated public servant, a compassionate leader, and a champion for Rhode Island’s most vulnerable residents.”

“I’m grateful for her 15 years of service to our state, especially her work as Director of BHDDH the past three and a half years. There’s no question that Rhode Island has benefitted from her leadership,” Raimondo said in a statement.

State Sen. Louis DiPalma, D-Middletown, the General Assembly’s most prominent advocate for people with developmental disabilities, said Boss is well respected and “will be missed.” In his 11 years in the Senate, DiPalma said, she is the only gubernatorial nominee he has testified for.

A BHDDH spokesman said the details of Boss’ “next steps will be forthcoming.” The search for a new director will begin immediately, he said. The spokesman could not immediately say whether there will be an interim director. Boss’ annual salary is $141,750.

In the field of developmental disabilities, Boss is leaving in the middle of an 18-month long rate review and analysis of the BHDDH fee-for-service reimbursement system for private service providers. The existing payment methods, enacted in 2011, have been criticized both by the U.S. Department of Justice and the former court monitor in the consent decree case.

Another big initiative underway in the Division of Developmental Disabilities is an effort to reach consensus with the community on the parameters of third-party case management which would satisfy rules of the federal Centers for Medicare and Medicaid Services for programs of care that are free of conflict among funding interests, direct service providers and case managers. The bureaucratic name for the initiative is “Health Home,” but it is neither a home nor a health care center.

Judge Names Antosh Interim Consent Decree Monitor, Bridging Impasse Between DOJ And RI

A. Anthony Antosh File Photo

By Gina Macris

A federal court judge has appointed A. Anthony Antosh interim court monitor for a 2014 civil rights consent decree protecting Rhode Islanders with developmental disabilities, breaking through a logjam created when the state and the U.S. Department of Justice (DOJ) failed to agree on a successor to Charles Moseley.

Antosh is a household name among Rhode Island’s developmental disability advocates, having served for 26 years as director of the Sherlock Center on Disabilities at Rhode Island College, from its inception in 1993 until his retirement just last month.

U.S. District Court Judge John J. McConnell, Jr. issued an order Nov. 25 naming Antosh and saying that “a further delay in appointing a Monitor is not in the best interest of the Parties (the state and the DOJ), or more importantly, those with intellectual and developmental disabilities and their families.”

The appointment, effective Dec. 1, will continue until one of three conditions has been met:

• The state and the DOJ agree on a replacement.

• The two sides submit a list of up to three names each for a replacement.

• The two sides “agree on another mutually agreeable solution.”  

The consent decree required the state and the DOJ to begin searching for a new monitor when Moseley, the original monitor, gave notice July 9 that he would step down Sept. 30, citing medical issues. 

The two sides could not meet a 30-day deadline set in the consent decree for agreeing on a new monitor, ceding the decision to McConnell, who was to name a replacement from list of up to six names –three submitted by each side.

McConnell initially set Sept. 30 as the deadline for the state and the DOJ to submit their respective candidate lists and then extended it until Nov. 25. No candidate lists were forthcoming.

“To help bridge the impasse, the Court requested the Parties submit an agreement on the role and responsibility of the Monitor. Unfortunately, the Parties could not come to agreement,” McConnell wrote. (See related article)

McConnell said he named Antosh on the general authority the consent decree granted him to enforce its provisions and the court’s “inherent jurisdiction to enforce [its] decrees.”

Antosh’s work is very well known to adults with developmental disabilities who advocate for themselves, their families, and professionals in the public and private sectors involved with implementing the consent decree.

Antosh and the Sherlock Center have served as a resource for Moseley, the previous monitor, as well as the state, private service providers, individuals and their families in providing targeted education and training on the inclusive principles of the consent decrees and how to translate them into daily practice.  In addition, the Sherlock Center has provided research to help the state in data collection and technical assistance to private providers trying to shift to community-based, integrated services.

The 36-page consent decree requires the state to correct violations of the Integration Mandate of the Americans With Disabilities Act in accordance with the Olmstead decision of the U.S. Supreme Court.

By 2024, Rhode Island must transform its system of daytime services for adults with developmental disabilities from a segregated model funded for the staffing of sheltered workshops to a community-based network with an emphasis on competitive employment.

DOJ And RI Can't Agree On Next Consent Decree Monitor; Judge McConnell To Decide

By Gina Macris

For more than four months, the U.S. Department of Justice (DOJ) and the state of Rhode Island have been unable to agree on a new monitor of the state’s compliance with a 2014 civil rights consent decree affecting adults with developmental disabilities.

The stalemate now leaves the choice to U.S. District Court Judge John J. McConnell, Jr., who will consider apparent differences between the DOJ and the state over the extent of the monitor’s authority in making his selection. McConnell must choose from up to six candidates – a maximum of three names submitted by each side.

In the absence of a monitor, whose duties include mediation of disputes, a disagreement simmered between the state’s consent decree coordinator and an Employment First Task Force. The argument, concerning the the independence of the task force, escalated to the point of prompting a letter from the DOJ to the state’s lawyers.

The monitor’s job became vacant with the retirement of Charles Moseley, who notified all concerned on July 9 that because of health concerns, he would step down effective Sept. 30.

The state and the DOJ had 30-days to agree on a replacement once Moseley gave his notice, according to the consent decree. After 30 days, the decree says, the judge makes the selection from the candidates submitted by the two sides.

McConnell initially set a deadline of Sept. 30 for the two sides to conclude discussions, but at the end of September, he extended the deadline to Nov. 25, requiring the DOJ and the state to check in with him every two weeks on the progress in talks.

Earlier this month, he asked the two sides to submit statements on their respective views of the role of the consent decree monitor. That deadline also was extended, from Nov. 19 to Nov. 22.

The statements appear similar in many details but suggest that the DOJ envisions greater independence for the monitor than does the state. The DOJ has asked for a phone conference with the state and the judge on the matter of the monitor’s selection.

During the time there’s been no monitor, comparatively small differences between the state’s consent decree coordinator and an Employment First Task Force (EFTF) have coalesced into a dispute over the independence of the Task Force that reached the ears of the DOJ in at least one telephone call.

The EFTF was created by the consent decree to serve as a community-based advisory group to the state, the monitor, and the court. Its members are drawn from many non-profit organizations working to improve the quality of life of adults with developmental disabilities, as well as representation from those receiving services and their families. .

The flap appears to finally have been settled with a Nov. 13 letter from the DOJ to the private lawyers representing the state in the consent decree, Marc DeSisto and Kathleen Hilton.

The letter said EFTF members informed the DOJ that the state’s consent decree coordinator, Brian Gosselin, has told the task force not to communicate with the DOJ without Rhode Island’s oversight.

Gosselin, queried briefly by Developmental Disability News after an EFTF meeting Nov. 19, which he attended with Kathleen Hilton, one of the state’s consent decree lawyers, said it was a “genuine misunderstanding.”

The DOJ said in its letter that it hoped it indeed was a misunderstanding that was at the heart of the disagreement:

“We hope that there is simply a misunderstanding or miscommunication here, as such an instruction would be inconsistent with the role of the Task Force as set out in the Consent Decree,” wrote DOJ. While the consent decree required the state to create the task force,” the letter said, the consent decree ”does not contemplate that the State will supervise its work, dictate its findings, or limit its communications. The Task Force’s members are independent stakeholders whose role is to assist in successful implementation of the Consent Decree, including by providing recommendations to the Monitor and State officials.”

“Indeed, any limitation on open communication would undermine the intended autonomy of the Task Force. We ask Rhode Island to help ensure that the channels of communication between the Employment First Task Force, the United States, and the Monitor are uninhibited,” the letter said. It was signed by trial attorneys Jillian Lenson, Victoria Thomas and Nicole Kovite Zeitler.

The letter was not discussed at the most recent EFTF meeting, but there appeared to be some tension between Gosselin and members of the task force around a discussion that began with EFTF questions about the details of the state’s latest quarterly compliance report and ended with the state’s own questions about ways the task force could do more to work in the field to present the benefits of employment.

Members of the task force indicated they do what they can in the community, but added that they are a group of volunteers, most of them with full time jobs. (Some of them are also family members with responsibilities for individuals with special needs.) Task force members emphasized the advisory nature of the committee, echoing the DOJ letter.

If a monitor were in place, he or she might be expected to mediate differences between the consent decree coordinator and the EFTF before they got the point of requiring a lawyer’s letter from one side to the other. In fact, the consent decree explicitly authorizes the monitor to mediate, although the monitor’s recommendations for settling disputes are not binding, unless they happen to overlap with requirements of the consent decree, according to the DOJ.

As to the monitor’s powers, one of the main points made by the DOJ is its view that the monitor is not bound by the preferences of the state or the DOJ, unless the preferences are also required by the consent decree itself. By the same token, the state is not bound by the DOJ’s preferences and vice-versa, according DOJ view.

The state does not spell out that distinction between either sides’s preferences s the requirements of the consent decree. The differences between the DOJ and the state are highlighted in red or blue type in a in an extra document submitted to McConnell by the federal government.

In the highlighted document, the two sides differ on the monitor’s independence in evaluating situations in which there is a change in the relevant facts, like fluctuating numbers of people in the consent decree “target populations”, or subgroups, who are required to be placed in jobs in the community. (There are four “target populations,” depending on whether or not individuals ever were employees of a sheltered workshop or whether they were in high school or young adults at the time the consent decree was signed.)

If, for example, the number of target population members is lower than the number of target population members required to be placed in integrated employment, the state says that monitor will make recommendations or ask advice from the court on how to evaluate the state’s compliance in light of the changed numbers.

The DOJ, however, just asks that the monitor report the changed numbers to the court.. Its preferences would not put any qualifiers on the monitor’s authority to evaluate the new situation.

There is agreement that the annual budget for the court monitor, including expenses any consultants that may be hired, should not exceed $300,000, as required by the consent decree. The state pays the monitor.

But the DOJ points out that the consent decree allows the monitor to ask for increase that would exceed the $300,000 limit. The state’s document omits that point. Any expenditure over $300,000 would require approval by the state, according to the consent decree.

In many respects, the submissions by the state and the DOJ are identical.

Read the state’s view of the monitor’s role by clicking here.

Read the DOJ’s view of the monitor’s role by clicking here.

Read the DOJ comparison of the two documents by clicking here.

Amy Grattan Named Director of Sherlock Center

Grattan Sherlock Center Photo

By Gina Macris

Amy Grattan, an expert in special education with a focus on early childhood, has been appointed director of the Paul V. Sherlock Center on Disabilities at Rhode Island College.

Grattan “brings a breadth of knowledge and experience in the field of disability and special education,” according to a Sherlock Center statement on her appointment.

Grattan will help ensure that “Rhode Island’s citizens with disabilities have a strong and vibrant advocate” and will “strengthen the many positive collaborative relationships with Rhode Island school systems and community partners,” the statement said.

The Sherlock Center, a federally funded University Center for Excellence in Developmental Disabilities (UCEDD), has served as a key resource as Rhode Island tries to transform its services for adults with developmental disabilities from a segregated model to an inclusive one to comply with the integration mandate of the Americans With Disabilities Act, as required by a 2014 civil rights consent decree.

The Sherlock Center has provided a philosophical framework on inclusion, as well as technical assistance, research and specialized training and educational programs for state employees, direct care workers, families and individuals who themselves receive developmental disability services.

A Sherlock Center staff member since 2005, Grattan has served as a consultant for initiatives aimed at improving early childhood education nationwide and in Rhode Island, collaborating with the state Department of Education and with local school districts. Currently, she also serves as a consultant on early childhood education for the Sherlock Center’s counterpart at the University of Connecticut.

In addition to early childhood education, she has expertise in alternate assessments, standards-based instruction, and helping teachers understand students significant disabilities and autism, accoring to the Sherlock Center statement.

Grattan also has served Rhode Island College as an adjunct professor in special education and early childhood education at the masters’ level. Her appointment became effective Oct. 21, according to a Sherlock Center spokeswoman.

Grattan succeeds A. Anthony Antosh, who had served as director of the Sherlock Center since its inception in 1993. Antosh was responsible for securing the federal grant which established the Sherlock Center as a UCEDD. The center was named after the late Paul V. Sherlock, a special education professor at Rhode Island College and state legislator who became widely known as a tireless advocate for Rhode Islanders with disabilities.

Public Slams RI DD Funding Constraints

By Gina Macris

Funding for Rhode Islanders with developmental disabilities works against the individualized care that is at the core of the state’s vision for social services.

That was the assessment from families and developmental disability professionals who responded to an outside consultant’s call for public comment Nov. 5 about the rates and rate structure governing Rhode Island’s privately-run system of care.

Rick Jacobsen * All Photos By Anne Peters

Rick Jacobsen, a representative of the New England States Consortium Systems Organization (NESCSO), hosted an open-ended conversation with an audience of about 40 people during a public forum at the Barrington Public Library sponsored by the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

There is wide concern among families that “in many cases the funding doesn’t seem to be reflecting the support needs” of the individuals in question, said Claire Rosenbaum, who has a daughter with developmental disabilities and also works as Coordinator of Adult Services at the Sherlock Center on Disabilities at Rhode Island College.

Claire Rosenbaum

Rosenbaum said Individuals with varying needs seem to be assigned the same middle-of-the-road funding, according to what she has heard anecdotally in her position at the Sherlock Center.

Much of the discussion focused on the fee-for-service reimbursement system called Project Sustainability that the state implemented in 2011. The state uses a highly scripted interview process, called the Supports Intensity Scale (SIS) to determine the support needs of each adult approved for developmental disability services. Then a closely held algorithm is applied to the SIS score to come up with one of five funding levels for each person.

The core issue is “how you get from the (assessment) score to the level of funding,” said Cliff Cabral, vice president of Seven Hills Rhode Island, a service provider. That process is a “complete mystery,” he said.

Cliff Cabral

He pointed out that the developer of the assessment, the American Association on Intellectual and Developmental Disabilities, did not intend it to be used as a funding tool.

And Cabral noted that the U.S. Department of Justice (DOJ) has criticized the seeming conflict in having the same state agency both performing the SIS assessment and controlling funding for individuals’ services.

“The need to keep consumers’ resource allocations within budget may influence staff to administer the SIS in a way that reaches the pre-determined budgetary result,” the DOJ said in findings that led to a 2014 consent decree with the state to reform disabilities services.

BHDDH is having a series of community conversations about outsourcing individual service planning and case management functions to a third party to comply with federal conflict-of-interest rules, but some who have attended these sessions say they understand that the parameters of the discussion do not include an outside entity taking on the SIS assessment.

Asked for comment after the forum, BHDDH has issued a statement which said that the discussion around the third-party Health Home “has included an expressed interest in a fire wall between assessment and funding. In these discussions, which are informing the case management redesign, BHDDH has agreed to consider future assessment responsibility.”

If the assessment were put in the hands of a third-party, it would relieve the tension, said Mary Beth Cournoyer, who has a son with developmental disabilities.

In Novemeber, 2016, the SIS was updated and the interviewers were retrained. But at the Barrington forum, Claire Rosenbaum said the re-cast “SIS-A” is not very different than the old one. And parents, including Dorie Carder, whose 20 year-old son has developmental disabilities and a medical condition, reported that interviewers are still argumentative, challenging their perceptions of their children and trying to pull the answers to the questions in one direction or another.

Another problem cited at the forum involved appeals by familes and providers who disagree with the funding resulting from the SIS. Rosenbaum said the appeals require a “ton of staff time.” And she said they must be filed annually or every three months, depending on the situation.

Sue Joinson

Sue Joinson agreed, pointing out that the appeals also cost BHDDH social workers extensive time. Joinson, whose daughter has extensive medical needs, also has worked on appeals in her job as director of nursing at the Corliss Institute, a developmental disabilities service provider.

Dorie Carder, the parent with the 20-year-old son, said the first SIS she had was a “horrible experience.”

Dorie Carder

When she appealed the results, she faced off alone against a BHDDH lawyer and a social work supervisor, who challenged her on the medical details of her son’s case. Then, Carder said, she had to wait a year to get the results of the appeal. Still dissatisfied, she went to the Director of Developmental Disabilities, Kerri Zanchi, who ordered a new SIS interview that resulted in a better funding level.

Before the SIS was adopted in 2011, the state accepted a questionnaire called a personal capacity index, combined with a “situational assessment” of the individual in various settings, to come up with an overall evaluation of need, said Joanne Malise, executive director of Living Innovations, which specializes in supporting adults with developmental disabilities in shared living arrangements in private homes.

Connie and John Susa

At one point, John Susa, a parent and long-time advocate, turned the tables on Jacobsen, the consultant, and asked Jacobsen if he thought Rhode Island has a system where “the money follows the person”, meaning that funding is tailored to meet individual needs.

Jacobsen replied, “There are a lot of constraints that intervene with that” personalized funding.

The audience provided examples of the constraints:

• Agencies must bill for services in 15-minute increments for each person during the day and cannot bill for time if a client is absent for any reason, even though the agency must maintain the same level of staffing

• Transportation funding is limited to one round trip daily, not conducive to community integration

• Staffing for community-based activities is linked to specific ratios that depend on individuals’ funding levels, not to the desired destination of any one person.

• For families who direct a loved one’s individual program, money is forfeited if it is not used within the three-month period for which it is allocated, for whatever reason, including staff shortages or hospitalizations.

Joinson recounted how, on the one hand, her medically-fragile daughter’s social service allocation was unused while she was hospitalized, and on the other hand, her social worker pushed back against her attempts to get a residential placement for her daughter, saying that there wasn’t enough money and others had more pressing needs.

“He tried to make me feel guilty,” Joinson said of the social worker, but a residential placement is what her daughter wants. BHDDH is trying to limit high-cost group home placements and instead wants to increase the number of shared living arrangements in private homes, lower-cost options which families and providers alike say often do not work for those with extensive needs.

Meanwhile, Cabral, of Seven Hills, noted that most adults with developmental disabilities do not have families to advocate for them, leaving the agency to act as the family.

The agency cannot turn down the individuals the state refers for residential placement, but these referrals often need a high level of behavioral support that make them a bad fit with those already living in the agency’s group homes, Cabral said.

NESCSO’s consultants have spent months reaching out to service providers and Jacobsen said they still plan to do some site visits.

But Cournoyer urged Jacobsen and other NESCSO representatives do a “deeper dive” into specifics from the family perspective.

Jacobsen was asked what impact NESCSO’s recommendations would have on the system. He said NESCSO was hired to give BHDDH a range of options, from small changes to blowing up the entire system and putting a new one in place. But in the end, the “choice is not mine,” he said. Instead, BHDDH officials have reserved the right to decide which options to pursue - or not.

Whether NESCSO’s recommendations ultimately result in real improvements will depend on the advocacy of the community, he said.

Jacobsen said he spent 20 years working for Medicaid in Rhode Island and no one ever asked him “how to spend more money.” Quite the opposite, he said.

If BHDDH asks for more money, Jacobsen said, someone “beats them over the head.”

BHDDH was not represented during the discussion, which was recorded and posted on the Facebook page of RI FORCE, a family advocacy group. Asked to comment on the recording, the department provided this context:

“BHDDH has invested sizable resources into a rate review process to provide the needed analytics and options to support system transformation. The department is committed to quality, safety and access through its vision of individualized, person centered, self-determined and community-based supports.

We recognize that this vision requires system transformation. While the system has certainly made progress, the underlying reimbursement system remains grounded in past practices. The purpose of this rate review is to assess the costs of services and explore other models for reimbursement. This work must also extend to understanding the system as a whole for consideration of both structural efficiencies and complexities that could hinder or promote transformation. This work is in progress and this is why feedback and input from the community remains vital and welcomed.

While the department has demonstrated its responsiveness through modifications and investments within the current structure, we look forward to the completed analytics and options that NESCSO will deliver to support both near term and long-term changes.”

Disability Rights RI and ACLU Sue To End Solitary Confinement For Inmates With Mental illness

From l to R: Steve Brown, exec director of RI ACLU; James Rollins, ACLU Cooperating Attorney and a partner at Nelson, Mullins, Riley & Scarborough, LLP in Boston; Amy Fettig of the ACLU Prison Project; Morna Murray, exec.director of Disability Rights RI; and Charles Feldman of the oasis Wellness and Recovery Centers RI * Photo Courtesty of Disability Rights RI

By Gina Macris

Disability Rights Rhode Island, formerly the RI Disability Law Center, has joined with the American Civil Liberties Union (ACLU) in filing a federal class action lawsuit on behalf of prison inmates with mental illness.

The announcement of the lawsuit on Oct. 25 also signaled that the re-framed Disability Rights Rhode Island will shift to a more systemic approach and aggressive stance in protecting vulnerable populations – including those with developmental disabilities.

In a press conference in Providence, Disability Rights Rhode Island, the ACLU’s National Prison Project and the ACLU’s Rhode Island affiliate announced the class action suit, which seeks to end the alleged inhumane and unconstitutional use of solitary confinement to punish inmates with serious mental illnesses, resulting in their further psychological deterioration. The complaint also seeks other sweeping changes in the treatment of inmates disabled by mental illness.

The lawsuit against the Rhode Island Department of Corrections alleges that the Adult Correctional Institutions (ACI) “subjects hundreds of people to prolonged solitary confinement in tiny, frequently filthy cells where they are kept locked down for 22 to 24 hours a day for weeks, months, and even years at a time,” according to a statement.

These inhumane conditions “subject individuals to serious psychological harm and increasingly acute symptoms” such as anxiety, depression, social withdrawal, paranoia, agitation, and suicidal ideation, according to a joint statement issued by the lawyers on behalf of six principal plaintiffs.

After a legislative commission recommended changes to the ACI’s treatment of inmates with mental illnesses in 2017, the Department of Corrections set up an alternative Residential Treatment Unit, but the plaintiffs say it is wholly inadequate.

Despite scores of inmates in solitary confinement on any given day, the Residential Treatment Unit has a capacity of only 8 men, and there is no alternate facility for women inmates with mental illness, the plaintiffs said.

At the press conference, Morna Murray, the new executive director of Disability Rights Rhode Island, recalled that a former director of behavioral health for the Department of Corrections, psychologist Louis Cerbo, told the state legislative commission on solitary confinement in 2017 that the ACI is the “the largest psychiatric hospital in Rhode Island.”

At the same time, Cerbo’s testimony indicated that the previous year, in 2016, the Department of Corrections had only 11 clinical social workers for a prison population of 3,000, Murray recalled.

A corrections staff untrained in the symptoms of mental illness and the appropriate de-escalation techniques instead uses force –particularly pepper spray – as the reaction of first resort to control inmates, Murray said.

After the press conference, Murray said the organization’s name change and its participation in the lawsuit represent a shift in approach.

“We are increasingly looking to create change on a larger and more systemic level. We know we can effect change for a much larger number of individuals with disabilities that way,“ she said.

Improvements in behavioral healthcare for ACI inmates is the organization’s top priority in the coming year, according to a redesigned website, Disability Rights RI, which is still undergoing improvements, Murray said.

“We will always continue to take individual cases, but we also have staff dedicated to the kind of aggressive and systemic change that this class action lawsuit represents,” Murray said. A more concentrated focus on systemic change will inevitably mean the disability rights lawyers on staff will be unable to take as many individual cases, she said.

But the organization is developing new group training sessions, webinars, and other resources to help creating many more resources, trainings and webinars to help individuals, parents and families to have the capacity to advocate for themselves when they can, Murray said.

“We are presently looking at other issues in the state that may lend themselves to larger actions, either legally or administratively with respect to state agencies,” she said. Before arriving in Rhode Island earlier this year, Murray headed the Connecticut state developmental disability agency, overseeing services for 17,000 people. She has spent most of her career as a public interest lawyer in the private sector, advocating for vulnerable populations.

Disability Rights Rhode Island is one of a nationwide network of federally funded protection and advocacy organizations mandated by Congress in 1975 after the exposure of inhumane conditions at Willowbrook, an institution for people with developmental disabilities on Staten Island. Murray may be contacted at mmurray@drri.org