RI DD Group Home Death Toll Ticks Up; DRRI Wins Policy Change On Hospital Visits

By Gina Macris

A total of 111 persons, or nearly 9.5 percent of the group home population for Rhode Islanders with developmental disabilities, have tested positive for the coronavirus as of May 13, including 7 persons who have died, according to figures of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) released May 13.

Of the total number of persons testing positive, 19 are currently hospitalized and the remainder, 85, are recovering in their homes, a BHDDH spokesman said.

There has been much concern among families and advocates that persons with developmental disabilities who are hospitalized with CoVID-19- or any other condition - may be denied the support of familiar caregivers or family members who can help them feel more comfortable in frightening surroundings and may also help healthcare providers with communication issues.

A month-long campaign by Disability Rights Rhode Island and other advocates to allow exceptions to hospitals’ no-visitation rules during the pandemic has apparently succeeded in persuading the state Department of Health (DOH) to amend its guidelines to allow children under the age of 18 and adult patients with developmental, intellectual or behavioral challenges to have one caregiver at a time at their side.

According to a May 8 update to the DOH Healthcare Facilities Visitation Policy, exceptions to the no-visitors rule may be made to “facilitate communication with hospital staff, accessibility, equal access to treatment and/or the provision of informed consent in accordance with the civil rights of patients with disabilities.”

The updated policy says a support person may include:

• a family member

• guardian

• community support provider

• peer support specialist

• personal care attendant.

In some instances, two support persons may be designated to alternate shifts, while allowing only one person to be at the patient’s side at any one time.

The amendment also specifies that patients with disabilities should similarly be allowed to use assistive technology, such as smartphones, tablets, communications boards, and other devices to “facilitate communication and ensure equal access.” To read it in full, click here.

Meanwhile, BHDDH has issued final guidance permitting people with developmental disabilities who direct their own program of supports to hire legal guardians, in addition to any other family member or qualified adult, during the COVID-19 state of emergency. Anyone working with adults with developmental disabilities must be able to pass a background check, but the timeline for these reviews has been relaxed and the fiscal intermediaries who handle payments have been given guidance on how to conduct them, according to BHDDH.

The state’s response to COVID-19 in regard to adults with developmental disabilities will be reviewed in the U.S. District Court by Senior Judge John J. McConnell, Jr. May 18 at 2 p.m. McConnell has modified the requirements of a 2014 civil rights consent decree to address the health and safety of the protected class during the pandemic.

The judge and lawyers in the case will have a video conference. The public may listen to the proceedings by dialing into a judge-specific telephone line and entering an access code. The full instructions are on the website of the U.S. District Court here.

Two Additional Deaths Reported Among RI DD Group Home Residents

The incidence of coronavirus in Rhode Island’s group homes for adults with developmental disabilities remains relatively low – at a little over 7 percent – but in the last two weeks there have been two more deaths among residents in congregate care, for a total of 6 fatalities.

Of some 1180 persons living in private or state-run group homes, 88 have tested positive for COVID-19, according to a spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH.) Seventeen of the 88 are hospitalized, the spokesman said May 4.

Previously, one group home staff member was reported as a casualty in the COVID-19 pandemic. No updated figures on additional deaths among staff, if any, were available, the BHDDH spokesman said.

The release of the Department of Health’s (DOH) 34-page “Crisis Standards of Care Guidelines” April 30 has drawn criticism from Disability Rights Rhode Island for failing to offer specific assurances that those hospitalized would not be subject to health care rationing because of their disabilities.

“We find the standards concerning,” said Morna Murray, the DRRI executive director. “The state has distanced itself from specific directives and is relying on hospitals to develop their own individual standards.”

She said the standards are “problematic and vague with respect to prioritization, triage processes, exclusion from treatment, and the suggested triage and decision-making tools in the Appendix,” Murray said.

A DOH spokesman responded that state’s health agency has a “commitment to ensuring equitable and just access to care for all Rhode Islanders, especially more vulnerable populations.

“We worked hard to try to have that commitment reflected in the document that was developed. Having said that, this is important feedback that we are going to consider internally as we look forward and think about ways that we can better ensure health equity for everyone throughout the state,” said the spokesman, Joseph Wendelken.

Murray said DRRI will follow up with partners in the community and other experts to provide a formal response to “these unsatisfactory standards.”

The standards are not now in effect and would be implemented, under the direction of DOH, only if the capacity of the overall health care system is overwhelmed, DOH explained in a press release accompanying the document. To read it, click here.

“The swift construction of temporary surge or “alternate hospital sites” in Rhode Island as a part of the State’s coronavirus disease 2019 (COVID-19) response provide another buffer from the need to implement these plans, should Rhode Island experience a surge in the near future,” Wendelken said in statement.

DDD CLARIFIES RULES ON STAFFING

In a recent COVID-19 update, the state Division of Developmental Disabilities clarified earlier messages which some found confusing about whether those who independently direct a loved one’s program of supports may hire a family member to provide care.

The most precise information is that “during the COVID-19 pandemic, people who ‘self direct’ can hire any qualified adult, including family members and parents, with the exception of legal guardians.”

BHDDH officials are conducting an additional legal review to determine whether individuals receiving services who have legal guardians can hire those guardians as employees to provide supports that usually would be provided by staff outside the family, according to the newsletter.

Employees typically must pass a background check before they are hired, according to the newsletter, but during the COVID-19 crisis, the rule has been relaxed to allow for a check to be conducted within 60 days after the end of the current state of emergency.

The newsletter covers additional COVID-19-related topics of interest to those with developmental disabilities, their families, and those who work in the developmental disabilities field. To read the newsletter in full, click here.

This article has been corrected to reflect the fact that there have been two additional deaths of Rhode Islanders with developmental disabilities in congregate care in the last two weeks; one April 21 and another April 28,

Hazard Pay For RI DD Workers On Its Way

By Gina Macris

Private employers of congregate care workers – including those in group homes for adults with developmental disabilities - began applying April 28 for COVID-19 hazard pay that could be in the paychecks of their employees as early as next week.

Over the weekend, Governor Gina Raimondo announced the Congregate Care Workforce Stabilization Fund to temporarily add stipends of $100 to $200 a week to the pay of front-line workers in nursing homes and group homes making less than $20 an hour.

“She heard. She listened and she acted,” said State Sen. Louis DiPalma, D-Middletown, who for weeks has been pushing for hazard pay along with the workers themselves, their unions, and their employers.

“It’s a great step,” he said, although “something that needed to be done before now” to incentivize low-paid workers to remain at their jobs while the coronavirus pandemic sweeps through the state.

He said he hopes the four-week pay boost, which kicks in May 4, will have the effect of curbing community spread of COVID-19 by discouraging group home workers from going to second jobs many of them need to make ends meet.

Tina Spears, executive director of the Community Provider Network of Rhode Island (CPNRI), said “we have been desperate to get support for our workers.”

The announcement of the workforce stabilization fund was “positive and welcome news,” Spears said. Asked whether the money would be enough, she said “nobody would say more wouldn’t be appreciated.”

Employers may apply for the 100 percent forgivable loans on the website of the state Executive Office of Health and Human Services, which is linked here.

The state urges employers to complete their applications by May 2 and “will make every effort” to deliver the lump sum payments next week, by May 6, according to the EOHHS website.

Employees making less than $20 an hour may be awarded the temporary pay hikes for four weeks, through June 1, according to the following schedule posted in the “program guidance” on the EOHHS website:

• Those who work 30 hours a week or more may receive an extra $200 per week.

• Those who work from 22 to 29 hours per week may receive $150 extra per week.

• Those who work from fifteen (15) to 21 hours per week may receive $100 more per week.

The forgiveness on the loans depends on audits showing the payments were used as intended, entirely for temporary salary hikes to eligible workers.

The average pay for a direct care worker in a privately-run group home for adults with developmental disabilities is about $13.18 an hour, according to CPNRI, a trade association of about two thirds of the three dozen private developmental disability service organizations operating in the state.

In March, CPNRI asked for a $4.55 hourly raise for direct care workers, or an average total of $17.73 an hour – still about a dollar less than the starting hourly wage of those who work in state-run group homes for adults with developmental disabilities. Members of the Service Employees International Union protested the pay earlier this month at one privately-run group home and received a $7 hourly raise.

The Congregate Care Workforce Stabilization Fund announced by Raimondo comes from the CARES Act, the emergency aid relief package of more than $2 trillion enacted by Congress in March.

Because the overwhelming majority of deaths from the coronavirus have occurred in nursing homes and other congregate care settings, the “next step” is taking mobile testing to those facilities in order to map the spread of the virus and inform better ways of containing it, DiPalma said.

Of the 1180 persons with developmental disabilities in group homes, there were 63 individuals testing positive for COVID 19 who have not been hospitalized as of April 27, according to a spokesman for the state Department of Behavioral Healthcare Developmental Disabilities and Hospitals (BHDDH). An additional 17 persons who have tested positive have been hospitalized, and there have been a total of five deaths, including four residents and one staffer, according to the BHDDH spokesman.

In a recent survey, families said their top concern was that a loved one with developmental disabilities might be hospitalized and unable to understand what was going on around them without a familiar caregiver, who could both help health care workers with communications and reassure and assist the patient.

The survey was conducted by a coalition of several advocacy organizations: RI FORCE (RI Families Organized for Reform Change and Empowerment), PLAN RI (Personal Lifetime Advocacy Networks), The ARC Family Advocacy Network, RI Developmental Disabilities Council, RIPIN (Rhode Island Parent Information Network), and the Paul V. Sherlock Center on Disabilities.

The coalition would like to see the governor and the Department of Health issue an order to hospitals to permit patients to have companions in cases in which there are challenges to effective communications and informed consent to care, according to a spokeswoman.

Spears, the CPNRI director, acknowledged that families are having difficulty getting support and information during the COVID-19 crisis.

She said that she is concerned not only with the human and financial resources necessary to get her provider network through the immediate crisis but with “creating some level of normalcy” for support of individuals in the future.

“There’s not an end in sight for us,” she said. “We will need an unprecedented level of support” for the developmental disabilities community “for some time.”

U.S. District Court Judge To Hear Status Of COVID-19 Supports For Rhode Islanders With DD

NOTE: THE U.S. DISTRICT COURT HEARING SCHEDULED FOR APRIL 28 HAS BEEN POSTPONED UNTIL A DATE TO BE DETERMINED, according to a notice posted in the case file the afternoon of April 27.

By Gina Macris

Chief Judge John J. McConnell, Jr. of the U.S. District Court in Rhode Island will hold a hearing Tuesday. April 28 - accessible to the public by telephone - on the state’s supports for adults with developmental disabilities during the coronavirus pandemic.

McConnell oversees implementation of a 2014 consent decree and companion agreement mandating integration of adults with developmental disabilities in the workplace and in the community, but he has modified the requirements to cover “essential services and supports” necessary for the health and safety of the protected class in light of the coronavirus pandemic.

The judge will hold a video conference with lawyers for the U.S. Department of Justice, the state, and with the independent court monitor, A. Anthony Antosh, beginning at 9:30 a.m. on Tuesday. Those who want to listen may dial in to Judge McConnell’s dedicated public access line at 866-390-1828 and enter the access code 3402145. A public notice on telephonic public access to hearings in the U.S. District Court, available by on the court’s website or by clicking here, warns that proceedings may not be recorded.

COVID-19 Hits DD Group Homes In RI

By Gina Macris

A total of 23 adults with developmental disabilities in Rhode Island group homes — not quite 2 percent of all the 1180 adult residents in congregate care in the state — have tested positive for the coronavirus, as of April 9.

All but four of the residents live in homes run by private service providers licensed by the state. The four exceptions live in group homes of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), a departmental spokesman said April 9. He said eight BHDDH employees also have tested positive.

Of the 23 group home residents with confirmed cases, 9 were hospitalized the morning of April 10, the BHDDH spokesman said. The hospitalizations represent about 39 percent of all adults with developmental disabilities in congregate care who have become ill with COVID-19. That figure is more than four times the 9 percent of the coronavirus-positive population statewide that has required hospitalization, according to figures released by the office of Governor Gina Raimondo April 9.

Tina Spears, executive director of the Communitiy Provider Network of Rhode Island (CPNRI), said the proportion of hospitalizations among residents underscores the general vulnerability of the developmental disabilities population, although she added that she has not heard that any of those hospitalized are in critical condition.

The BHDDH spokesman, Randal Edgar, said: “Many DD group home residents are older and have medical conditions that make them more vulnerable to the COVID-19 pandemic. BHDDH is very concerned about their wellbeing and that is why we are working around the clock to do everything we can to provide care and monitoring and make sure they receive any medical services that are needed.”

Among support staff in the private sector, no more than two dozen have tested positive, but that figure is likely to change from day to day, Spears said April 10.

More than half of the two dozen provider agencies belonging to CPNRI, a trade association, have no infections among staff or participants, she said.

So far, providers are coping, Spears said, but more specific planning is needed to shore up the resources of the private agencies, which are stretched thin in normal times.

State Sen. Louis DiPalma, D-Middletown, said the state needs a formal Emergency Response Plan to address the care of individuals with developmental disabilities who become ill. He said he is trying to organize a collaborative effort to drawing up such a plan.

Among the unanswered questions: What happens in a surge of cases among group home residents, if too many staff also become ill and are unable to care for them?

All agencies have adopted aggressive cleaning protocols – sometimes as frequent as every four hours – and other strict precautionary measures, like body temperature checks, in cases where individuals are particularly vulnerable, but the providers are primarily acting on their own initiatives rather than as part of an official directive.

Efforts are made to quarantine group home residents who have tested positive and those who may have come into contact with the virus but have not been tested. In addition to stepped-up cleaning protocols, group home operators control traffic patterns within a facility and assign only designated staffers to the individuals under quarantine and those who have tested positive.

Staffers who may have come into contact with someone who has tested positive outside of their work assignment rare instructed to self-quarantine at home for two weeks.

On April 7, the office of Governor Gina Raimondo announced a 10 percent increase in developmental disability reimbursement rates for residential services. The rate increase, retroactive to April 1, is set to expire June 30.

The rate increase “recognizes the additional costs organizations are facing related to the COVID-19 crisis,” according Edgar, the spokesman for BHDDH.

“The Governor, EOHHS (the Executive Office of Health and Human Services) and BHDDH are committed to meeting the needs of our state’s most vulnerable residents and supporting our providers,” Edgar said in a statement.

“Our intention is to help provide stability to our state’s DD (developmental disability) providers through this rate increase as well as the recent “retainer payments” (advance funding) which went into effect last week,” the statement said.

Spears, however, said the rate increases apply only to a small portion of the rate structure, while the crisis has had an impact on all operations, including daytime programming, and has resulted in unprecedented costs that threaten the viability of the private provider system.

For example, some agencies have had to offer double-time pay to incentivize employees to work in group homes where there has been an infection.

“There’s no way” they will get coverage if staff are “not incentivized to take the risk,” she said.

But state officials “are working with us at this point,” Spears said. “We’ll take them at their word,” she said.

For weekly updates on COVID-19 from BHDDH, sign up for the newsletter of the Division of Developmental Disabilities by clicking here.

"Huge Disaster Brewing In All Our Back Yards" - CEO of RI DD Group Home Agency

David REISS * Photo Courtesy the Fogarty Center

By Gina Macris

David Reiss, CEO of the John E. Fogarty Center, manages 18 Rhode Island group homes for adults with developmental disabilities, where all but 10 or 12 of the 80 residents have no place to go and no active family support in case of an outbreak of COVID-19 infections.

“We may be able to prevent people from getting sick if we have the proper equipment,” he said in a telephone interview April 3.

“But how can I ask someone to come to work when we don’t” have the necessary Personal Protective Equipment (PPE)? Reiss asked. “What do I do if I have no staff?”

While Reiss has devised a worst-case contingency plan in the event a resident in one of the group homes becomes ill, he and other providers are pressing the administration of Governor Gina Raimondo to categorize direct care workers as “essential health care workers” during the coronavirus crisis. That designation would allow them to receive protective equipment according to the same priority as nursing homes, and would help group home staff and residents get priority for testing and treatment, he said.

To be sure, Reiss said, hospitals and nursing homes are having trouble getting masks and protective gowns, but their predicaments are recognized publicly, while the pleas of the developmental disability community “seem to be getting no traction.”

“We’re the forgotten community,” he said.

Workers in group homes face the same risks as those in nursing homes, for less pay, he said. The average pay for direct care workers, the result of the reimbursement rates set by the state for private providers, is $13.18 an hour, according to a trade association analysis of wages for two dozen agencies. “There is a huge disaster brewing and it’s in all our back yards,” Reiss said.

There are 1180 adults with developmental disabilities in group homes, including 125 in state-run houses. At least one nurse who works for a service provider has said privately to colleagues that it’s probable the coronavirus will reach the group homes.

As it now stands, without adequate protective equipment and space to isolate the sick, Reiss said, he has no choice but to call 911 and send that person to the hospital. He has asked his staff for volunteers who would be willing to each take a single healthy resident into their own homes to clear two or three facilities as isolation wards for the ill, Reiss said. But that plan is more a hope than a reality at this point, he said.

The request that developmental disability workers be designated essential health care workers has been “kicked up to at least the Department of Health,” Reiss said.

The state’s Director of Developmental Disabilities, Kerri Zanchi, is pressing for the same designation, according to a weekly newsletter emailed to members of the developmental disabilities community March 28.

But it is not clear – to Reiss or others – who has the authority to make such a designation.

Pressed on the matter, a spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals said in a statement: “The people who work in the community-based provider systems who are supported by BHDDH are a critical workforce as we fulfill our mission. Our understanding is that the Department of Health is looking at this issue” of essential health care worker designation.

The U.S. District Court, meanwhile, has issued an order that the state “will make best efforts” to ensure that those protected by a 2014 civil rights consent decree continue to receive “Essential Services and Supports,” that are necessary for their “health and safety.”

The order, issued April 1, requires the state to consider recommendations from various segments of the community, including representatives of families, service providers and advocates, for providing “Essential Services and Supports” during the crisis. “Essential Services and Supports” were not further defined.

The order from Chief Judge John J. McConnell, Jr. also requires the state to bring community representatives to the table in its pursuit of waivers, or exceptions, to federal Medicaid rules to allow a more nimble response to the current public health crisis.

McConnell said he wants a report from the state by April 8 on its progress in addressing changes to Medicaid rules with the federal government.

In addition, he said, he wants reports from the state every two weeks on:

· How “Essential Services and Supports” are being provided

· Funding for such supports

· Strategies for maintaining and supporting the direct support workforce

· Communication with those protected by the consent decree, their families and other stakeholders.

Financially, service providers have been hanging on by a thread, in many cases forced to lay off day program staff because of social distancing rules. The Fogarty Center, for example, has laid off 22 workers, Reiss said.

Reiss said he understands the state was processing the first of a series of emergency payments to providers during the week ending Friday, April 3.

These advance payments will “stop the hemorrhaging,” but will not make providers whole, said Tina Spears, executive director of the Community Provider Network of RI, the larger of two provider trade associations in Rhode Island.

Spears has pressed for a statewide rate increase of $4.55 an hour for those who are still at work because of the greater risks and demands on them. That increase would boost the pay of workers in privately-run group homes from an average of $13.18 an hour to $17.73, which is still about a dollar less than the starting wage of those who do the same work in the state-run group homes.

One of the waivers, or exceptions, the state is seeking from the Centers for Medicare and Medicaid Services would allow the state to incorporate rate increases in emergency payments to providers.

The total $15.4 million approved by the state so far represents federal-state Medicaid money already in the budget which is being issued in advance rather than paid after services are rendered. It is intended to protect private providers from bankruptcy during the crisis.

On another front, Disability Rights Rhode Island (DRRI), the legal protection and advocacy agency, said that it has sent a letter to Governor Gina Raimondo asking her to give clear emergency guidance to hospitals and providers to prevent “any discriminatory rationing of health or emergency measures during this time,” according to a statement from the organization.

The Americans With Disabilities Act, Section 504 of the Rehabilitation Act, and the Affordable Care Act all prohibit discrimination on the basis of disability.

In the letter to Raimondo, Morna Murray, executive director of DRRI, said that federal law requires several points to be made in any guidance from the Governor’s Office and the Rhode Island Department of Health to healthcare practitioners “in order to avoid discriminatory outcomes. Murray outlined the following points in the letter:

• Treatment allocation decisions must be made based on individualized determinations, using current objective medical evidence, and not based on generalized assumptions about a person’s disability.

• Treatment allocation decisions cannot be made based on misguided assumptions that people with disabilities experience a lower quality of life, or that their lives are not worth living.

• Treatment allocation decisions cannot be made based on the perception that a person with a disability has a lower prospect of survival. While the possibility of a person’s survival may receive some consideration in allocation decisions, that consideration must be based on the prospect of surviving the condition for which the treatment is designed – in this case, COVID-19 - and not other disabilities. Treatment allocation decisions cannot be made based on the perception that a person’s disability will require the use of greater treatment resources. Reasonable modificitons must be made where needed by a person with a disability to have equal opportunity to benefit from the treatment.

Murray also said that people who use ventilators on a daily basis should never be removed from ventilator support “for reasons of rationing.”

“It is vital that explicit guidance from RI DOH to medical providers clearly set forth that such actions are never acceptable.” She said.

The DRRI statement said its legal operations remain available to the public. The organization indicated its attorneys are particularly concerned about any medical rationing, discriminatory “Do Not Resuscitate” (DNR) orders in hospitals, or emergency placements of individuals with disabilities in congregate settings that are disrupted as a result of the coronavirus. For contact information and details about DRRI operations, click here.

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.

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.