Vaccinations Accelerate For RI DD Group Homes

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By Gina Macris

At least 1,300 residents and staff of group homes for adults with developmental disabilities in Rhode Island have been vaccinated against COVID-19 since Jan. 16, with another 500 vaccinations scheduled for today and plans underway for additional clinics next week, according to a spokeswoman for group home operators, Tina Spears, executive director of the Community Provider Network of Rhode Island.

Spears is coordinating the exchange of logistical information necessary between group home operators and public health officials to carry out the vaccination clinics.

The acceleration of vaccinations for group home residents and staff comes as the rate of COVID-19 infections in congregate care seems to be slowing, after a spike around the Thanksgiving and Christmas holidays. Going forward, health officials on the national and statewide level are racing to step up the pace of vaccinations to prevent the spread of more transmissible variants of the virus arriving from other countries. And they urge the public to remain vigilant about wearing masks and taking other precautions.

A total of 378 group home residents had tested positive for COVID-19 at the end of Tuesday, Jan. 26 – more than double the 182 who had been reported COVID-positive on Nov. 2, according to statistics compiled from RI Department of Health data by the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH). But there were only about 15 new cases between Jan. 20 and 27, or about half the pace of the weekly increase in mid-December. Among all group home residents in privately-run homes, 31 percent have tested positive since the pandemic began 10 months ago.

A total of 612 group home staff had tested positive by the end of the day Jan. 27, or 16 more than the 596 reported the previous week, according to data compiled by BHDDH. During the prior week, the number of cases among staff had jumped by nearly 50.

The cumulative number of hospitalizations among residents and staff and the number of deaths has remained constant since early January. At that time, 84 residents and 19 staffers have been hospitalized since the pandemic began. Only one person is currently in the hospital. A total of 14 persons have died, most of them group home residents.

COVID-19 Vaccinations Begin At RI DD Group Homes

By Gina Macris

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Rhode Islanders with developmental disabilities aged 65 and over and their group home caregivers are receiving the COVID-19 vaccine through the CVS/Walgreen partnership, according to a spokeswoman for the state Department of Health.

More than 300 group home residents and staff were vaccinated over the weekend of Jan. 16-17, said Tina Spears, a representative of private agencies who is coordinating information between the group home operators, DOH officials, and those involved directly in the vaccination process.

“We are hoping to scale up the number this week and every week thereafter,” she said Jan. 20. Spears is executive director of the Community Provider Network of Rhode Island (CPNRI), a trade association. By Jan. 21, tentative plans were being formulated to expand vaccination in the coming days to include younger group home residents with underlying medical conditions, as well as their housemates and staff, Spears said.

The DOH spokeswoman said that all adults with developmental disabilities in congregate care are included in Phase 1 of the vaccination program, with those in the 65 and older age bracket in Phase 1.2 and those younger than 65 in Phase 1.4. The spokeswoman, Anna Tomasulo, could not say exactly when Phase 1.4 would begin, or when adults with developmental disabilities who have other living arrangements might be offered the vaccine.

New Language On Support Persons In Hospitals

In a separate health-related development, DOH has put in place a COVID-19 emergency regulation which says hospitals “shall not unreasonably deny entry to support persons of an individual with a disability as defined by the Americans With Disabilities Act of 1990.”

The regulation says hospitals must provide accommodations to patients with disabilities so that they may be accompanied by as many as two support persons who can facilitate communication with hospital staff and ensure equal access to treatment and informed consent. Notices about the regulations must be posted in English and a minimum of three other languages commonly used by patients and staff in conspicuous places in the hospitals, along with a DOH telephone number to call with concerns.

Disability Rights Rhode Island (DRRI) led a led a push for the new regulation, which previously had been expressed as a matter of policy and unevenly adopted by hospitals, resulting in dozens of complaints that continued throughout 2020.

Morna Murray, executive director of DRRI, said, “We hope this language will go a long way toward educating everyone about the rights of individuals with disabilities to access their own health care.That is what having an essential support person is all about.”

“We will be monitoring the situation and are cautiously hopeful that this more rigorous regulatory language will be consistently implemented,” Murray said in a statement.

Access to COVID-19 vaccine remains another hurdle for advocates of adults with developmental disabilities in Rhode Island and throughout the country.

The American Academy of Developmental Medicine and Dentistry (AADMD) and other organizations have cited research highlighting COVID risks for adults with developmental disabilities, who as a group tend to have a higher rate of underlying medical conditions than the general public and are less likely to be able to follow mask-wearing and personal hygiene guidelines.

In December, the federal Centers for Disease Control (CDC) put Down syndrome on the list of those who should be vaccinated. But the CDC also says that “most people with developmental or behavioral disorders are not naturally at higher risk for becoming infected with or having severe illness from COVID-19,” a statement highlighted by Tomasulo, the DOH spokeswoman.

She said that the federal Advisory Committee on Immunization Practices (ACIP) makes recommendations to the CDC for the entire nation, while Rhode Island’s Vaccine Advisory Subcommittee “reviews these recommendations and determines how best to apply them to Rhode Island’s unique demography.

She offered two links for comparing the CDC recommendations for vaccine prioritization and the DOH Phase 1 plan:

Tomasulo continued: “We want all Rhode Islanders who want to be vaccinated to get vaccinated. However, our supply is limited. Our Phase 1 priorities are to ensure that our healthcare infrastructure is able to continue to respond to the COVID-19 pandemic, and to protect those most at risk in long-term care facilities. As supply allows, we move on to other priority populations.”

Within Phase 1, one group may start receiving the vaccine before a previous group is completed, depending on the vaccine supply and the resources to administer it, she said.

Federal Judge Orders RI DD System Overhaul, $7 Worker Pay Hikes By 2024

By Gina Macris

Chief Judge John J. McConnell, Jr. of the U.S. District Court has tightened his reins on Rhode Island’s developmental disability system in an order that gives the state two and a half years to raise the hourly wages of direct care workers nearly $7, to $20 an hour, as part of a sweeping overhaul to comply with the Integration Mandate of the Americans With Disabilities Act.

Through its budget, the state controls the parameters of wages for front-line caregivers, who make an average of $13.18 an hour working for some three dozen private agencies under license from the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

McConnell’s order, issued Jan. 6, distills recent recommendations of an independent court monitor, who said that Rhode Island cannot fully comply with a 2014 civil rights decree unless it overhauls its entire developmental disabilities system and increases funding. The civil rights consent decree says federal oversight is to expire June 30, 2024, but only if corrections of civil rights violations have been in place for at least a year.

Low front-line worker pay is widely regarded as the biggest weakness of the state’s developmental disability system. Provider agencies, as well as those independently coordinating their own services or the services of loved ones, have found it increasingly difficult to recruit and retain staff, who often can make more in fast food restaurants and retail stores, or at an Amazon distribution center. The staffing situation has only been exacerbated by the COVId-19 pandemic in the last year.

With the 2024 deadline in mind, McConnell’s order gives the state about six months to develop a three-year budget plan that will subsequently reach the $20 hourly worker rate. That pay increase would be effective in the 2024 fiscal year, which begins July 1, 2023.

The budget plan also must provide:

  • Proportional wage increases for other categories of support staff, like job developers and supervisors

  • Increased funding to address the costs of moving from a segregated system of care to one that integrates adults with developmental disabilities in their communities for work and leisure time.

  • A per-capita amount for technology. Mobile phones and other hardware would provide internet connectivity still inaccessible to many adults with developmental disabilities as well as provide other kinds of assistance, depending on individual needs.

  • Increased funding for transportation, found to be a barrier for many in getting to work or attending community events.

  • Increased funding for the individualized planning that is supposed to drive purposeful services designed to help people lead meaningful lives.

Other than the direct care wages, McConnell’s order specified no dollar amounts for the three-year fiscal plan, which he said must be completed before the next fiscal year’s budget is finalized. (Plans aside, the General Assembly can only authorize funding one year at a time.)

The judge said the amounts must be negotiated between state officials and representatives of the community, including “individuals with intellectual and developmental disabilities, families, organizations that provide services and supports, and other stakeholders.”

And beginning this year, McConnell said, the legislative and executive branches must take into account the developmental disabilities caseload in calculating its public assistance obligations in the semi-annual Caseload Estimating Conference, which occurs in May and November in conjunction with the Revenue Estimating Conference. The costs of the developmental disabilities services historically have been omitted from caseload estimating conferences, which are used by the executive and legislative branches in annual budget planning.

In addition, the judge’s order said the state has until June to complete the revision of “all aspects of the developmental disabilities and funding system,” a reference to basic assumptions and regulations that for the last decade have been designed to promote group or congregate care. That effort has been underway since last July. Its parameters are already subject to a separate court order.

Since 2016, state officials have strived to provide pilot programs to support regular employment and increase community activities for adults with developmental disabilities, but it has become increasingly clear that the existing level of funding and the associated reimbursement rules for private service providers will not support system-wide change.

A full discussion of the issues reflected in the judge’s order are contained in a recent fiscal analysis submitted to the court by the court monitor.


Advocates Call For Vaccination of High-Risk DD Population And Caregivers

By Gina Macris

While there is growing research that COVID-19 puts people with developmental disabilities at a higher risk for serious illness or death than virtually any other compromised group, Rhode Island’s disability rights advocates remain uncertain whether the state will follow through on intentions to include this population in the initial vaccination phase.

Since the pandemic hit Rhode Island last March, it has affected nearly 30 percent of adults with developmental disabilities living in group homes and an uncounted number of others with intellectual or developmental challenges living in other settings. A total of about 550 group home staff have tested positive for the virus.

On Dec. 28, the Centers for Disease Control (CDC) announced that it had added Down syndrome — one of the most common developmental disabilities — to the list of conditions that put people at risk from serious illness or death from COVID-19.

People with Down syndrome are at higher risk for early-onset dementia as well as congenital heart disease, obesity, gastrointestinal disorders, and other chronic medical conditions.

On Jan. 8, the chair of the Rhode Island Developmental Disabilities Nurses Association (RIDDNA), wrote to the state’s public health epidemiologist, as well as coordinators for vaccine distribution, seeking confirmation that Phase 1 vaccinations, now underway, will include adults with developmental disabilities and the nurses and direct care staff who work with them.

Others are also pressing for similar assurances from officials of the Department of Health (DOH), including the health department’s counterparts at the state Department of Behavioral Health, Developmental Disabilities and Hospitals (BHDDH) and the Community Provider Network of Rhode Island (CPNRI), a trade association of private service agencies operating group homes and offering daytime services to adults with developmental disabilities.

Tina Spears, CPNRI’s executive director, said initial advice from DOH was that adults with developmental disabilities are to be prioritized for vaccination in the ongoing Phase 1 distribution.

At the same time, this population does not appear on the patient list of the CVS-Walgreen’s partnership assigned by DOH to handle long-term care vaccinations, Spears said.

She said state officials need to “step up” and make the Phase 1 designation explicit.

The DOH COVID-19 portal says Phase 1 includes “long-term care facility staff and residents” but does not specifically mention adults with developmental disabilities. As examples of long-term care settings, DOH lists “group homes for individuals primarily 65 and older, assisted living, (and) elderly housing with residential services.”

Spears, meanwhile, said that she considers anyone eligible for developmental disability services from BHDDH to be receiving long-term care, whether in a residential setting or during the day in the community.

Fournier, the chair of the nurses’ group, highlighted the conclusions of research that has shown adults with developmental disabilities have greater incidences of the same underlying chronic medical conditions that have already been recognized as risk factors in non-disabled adults. These underlying conditions include heart disease, diabetes, various cancers, and asthma, as well as obesity and seizure activity.

Fournier cited joint recommendations of the American Academy of Developmental Medicine and Dentistry (AADMD) and a coalition of more than a dozen nationwide disability rights organizations that vaccine programs prioritize adults with developmental disabilities and all those who care for them, whether paid caregivers or unpaid family members.

Those living and working in group homes and other congregate care settings should be considered at the same risk as patients and staffs of nursing homes, according to a joint position paper issued by the AADMD and the disability rights groups.

Several research studies analyzing COVID-19 cases indicate that that those with intellectual or developmental challenges are more likely to die from COVID-19 than most, if not all, risk groups. They include an case analysis of privately-insured COVID-19 patients completed in November ty the nonprofit FAIR Health in conjunction with the John Hopkins School of Medicine.

Only 10 states, none of them in New England, have explicitly prioritized adults with developmental disabilities in their vaccination programs, according to the American Network of Community Options and Resources (ANCOR).

In Rhode Island, Fournier’s letter to public health epidemiologist Genevieve Caron pointed out that home care nurses have been receiving the vaccine, but nurses who work with the developmental disabilities population also work in home settings and have not been identified as vaccine-eligible.  

DOH did not immediately respond to a request for comment.

As of Jan. 6, a total of 351 of 1,212 residents in congregate care had tested positive for COVID-19 since the counting began last spring, according to figures compiled by state officials and obtained by Developmental Disability News.

The virus has affected a total of 214 group homes – all but 77 facilities in the privately-run system under license from the state, according to these figures.

A total of 14 group home residents and staff members have died.

In November, BHDDH had reported 12 deaths, including 9 group home residents and 3 staff members, but more recently, BHDDH lawyers, through a spokesman, declined to say whether the two most recent deaths were staff members or residents, They cited patient privacy concerns.

In its most recent update on COVID -19 on Jan. 8, BHDDH officials acknowledged they have received many inquiries about vaccination from the developmental disabilities community.

In a statement, officials said:

“We believe that all at-risk individuals, providers, and staff should be vaccinated and we have strongly and repeatedly advocated for that – however it is a challenge with a very limited supply of vaccine at this time. We expect that as more pharmaceutical firms get their vaccines approved, the timetable will become more generous. As soon as vaccinations dates become available, we will make information available.”

A global vaccine tracker maintained by Bloomberg News shows that Rhode Island has administered 2.98 per 100 people, for a total of 32,000 injections, or 43.7 percent of the state’s total current supply of 72,000 units. The tracker shows that 1,798 persons have received a second dose.

$10 Million CARES Act Money Set As Emergency Aid For RI DD Providers

By Gina Macris

(This article has been updated.)

The state of Rhode Island has agreed to set aside $10 million from the federally-funded CARES Act as a short-term safety net for private providers of developmental disability services, who are in “financial distress” as a result of the coronavirus pandemic.

The state negotiated the sum with the providers, working under an order from Chief Judge John J. McConnell, Jr. of the U.S. District Court to ensure the private agencies don’t close their doors before the end of the fiscal year June 30.

McConnell formally approved the plan in an order Dec. 23, with an accompanying memorandum recognizing the “extraordinary efforts of the State", including Governor Gina Raimondo’s office and several departments of the executive branch, as well as State Sen. Louis DiPalma, D-Middletown, who participated in the negotiations.

“It is heartening to see the large state apparatus come together to assist those most vulnerable in our community, and to help fulfill the promises of the Consent Decree,” McConnell said.

The order also affirmed the state’s commitment to “work with providers to develop a three-year plan to improve outcomes for individuals with I/DD, and to include an investment in the I/DD provider network in the Governor’s FY22 state budget plan as part of this work.”

The continuity of the private provider system is essential to the state’s ability to comply with the consent decree, 2014 civil rights agreement requiring the integration of adults with developmental disabilities in their communities by 2024.

The agreement between the state and the providers establishes an “I/DD (Intellectual and Developmental Disability) Provider Support Program” of grants to cover pandemic-related losses of some three dozen private agencies, which have been forced to drastically reduce daytime services at the same time they have been saddled with sharply higher costs for safety measures necessary to protect residents of group homes.

The application process for funds and the distribution of the grants will run on an accelerated timeline, with initial information flowing to providers Dec. 21 and documented grant requests due back Dec. 28, according to the filing with the U.S. District Court. Funding is to be available Jan. 8. Agencies must document how they are using the funds by Jan. 30.

The program aims to expand daytime services for adults with developmental disabilities, who in large part received center-based care until the pandemic hit and forced providers to close these facilities. Some daytime services, including employment supports, have continued, but the grants are intended to enable providers to go into clients homes as well as build on existing individualized programs.

“Home-based service alternatives require a large and flexible workforce,” according to a summary of the grant program submitted to McConnell. Providers have had difficulty finding workers, having to pay up to $30 an hour to staff some group homes.

The program is intended to enable group home staff to better protect and care for residents, some of whom have pre-existing medical conditions and are particularly susceptible to being hospitalized with the virus when they otherwise might receive care in a less restrictive setting. Ensuring hospital beds are reserved for only the sickest patients is a public health priority, the summary said.

Agencies receiving grants must agree to comply with all COVID-related public health recommendations and several other conditions that further the goals of preserving and increasing services and supporting frontline workers who provide direct care.

The specific requirements detail a commitment to essential services, outreach to those in a variety of living situations, and making “reasonable attempts” not to lay off more than 50 percent of employees.

The summary said that it will require “broad cooperation” to overcome the problems COVID-19 has caused for the developmental disability system, which will continue to face challenges as the situation evolves.

“This partnership represents an opportunity to extend that cooperation to build strong resilience for the current crisis and improve health outcomes for all Rhode Islanders in need of I/DD services and supports. The State of Rhode Island looks forward to working with critically important I/DD providers, consumers, and other stakeholders to establish and carry out this partnership,” the summary concluded.

The court-ordered negotiations grew out of a Nov. 24 hearing before Judge McConnell. The testimony laid out the ways the COVID-19 pandemic has undermined providers’ ability to serve their clients and threatened the entirety of their operations. (See related article.)

The state’s lawyers said the negotiations were a “collaborative effort” facilitated by the independent court monitor in the case, A. Anthony Antosh.

The state participants included representatives of the governor’s office, the Department of Administration, the Office of Management and Budget, the Executive Office of Health and Human Services, the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, and members of the General Assembly.

The providers were represented by the Community Provider Network of Rhode Island, a non-profit trade association with about two dozen members, about two thirds of the three dozen agencies providing services to adults with developmental disabilities in Rhode Island. Other providers also participated, according to the state’s private lawyers, Marc DeSisto and Kathleen Hilton.

Lawyers for the U.S. Department of Justice engaged in the talks but took “no position” on the agreement, according to a separate statement they submitted to the court.

Read the documents filed by the state here.


RI Faces High Cost For Fixing DD ADA Violations

By Gina Macris

After funding services for adults with developmental disabilities below their actual costs for nearly a decade, the state of Rhode Island is about to experience sticker shock.

The system of private agencies that provides most services for adults with developmental disabilities is on the verge of collapse, by all accounts, and a federal judge has given the state until Dec. 18 – five days from now – to come up with the money to keep it afloat until the next fiscal year.

The state also is under court order to devise and execute a plan for strengthening the system during the next three years so it can comply with a federal civil rights agreement that requires Rhode Island to integrate adults with developmental disabilities into community life by 2024. With the judge ready to use his power to enforce the consent decree, those costs could increase spending on developmental disability services by a third or more in the next several years.

Last month, a federal court monitor addressed the short-term fiscal gap by suggesting that the state release $2 million a month in unspent funds already allocated to developmental disabilities simply to keep the agencies’ doors open over the next six months. The COVID-19 pandemic has forced agencies to shrink services and drastically reduce billing.

Judge John J. McConnell, Jr.

Judge John J. McConnell, Jr.

In a recent hearing before Chief Judge John J. McConnell, Jr. of the U.S. District Court, a spokeswoman for service providers took a different approach, saying the state needs to immediately raise direct care pay, now an average of $13.08 an hour, to enable the private agencies to recruit and retain employees during the pandemic.

Roughly two thirds of these essential workers are women and more than half are people of color, according to the trade association spokeswoman.

A recently-completed report from the association, the Community Provider Network of Rhode Island (CPNRI), fleshes out projected costs:

  • An hourly increase of $2.32, to $15.50, would require nearly $44.1 million a year, or 16.4 percent more than the state has currently budgeted.

  • A hike to $17.50 would mean an additional $79.8 million, or a 29.7 percent increase in the annual budget

  • A $20 hourly rate would add $124.5 million to the budget. That would amount to a 46.4 percent increase in spending.

The report, “A System in Crisis,” said employers need to be able to offer $17.50 immediately to get job applicants in the door during the pandemic. In Fiscal 2022, which begins July 1, the rate should be increased again to $20 an hour.

Monitor’s Calculations More Limited In Scope

The monitor, meanwhile, agrees with the need for pay hikes, although he would allow the state more leeway on the timeline. In his latest report, filed with Judge McConnell Nov. 30, the monitor, A. Anthony Antosh, said the state should raise hourly wages to $17.50 “as quickly as possible” and to $20 by Fiscal 2024, which begins July 1, 2023.

A. Anthony Antosh

A. Anthony Antosh

Antosh’s fiscal analysis focuses primarily on the changes needed in the final three years of the consent decree. He said there is consensus among various stakeholders with whom he has consulted that staffing and fiscal issues are the two main concerns in implementing the 2014 civil rights agreement.

“The state budget deficit resulting from the COVID-19 pandemic significantly complicates any fiscal analysis and any decision-making about budget planning,” he said.

Antosh makes no specific dollar recommendations but says that figures should be negotiated with provider agencies in a three-year budget plan to be completed in time to begin in the next fiscal cycle on July 1, 2021. He emphasized that the agencies provide 83 percent of the services necessary to support those protected by the consent decree.

Antosh said an ongoing review of the entire fiscal and reimbursement system, itemized in a 16-point court order issued by McConnell July 30, should be complete by June 30, 2021.

He also recommended that steps be taken now to make sure that the specific costs of a strengthened developmental disability system are acknowledged when future state budgets are being developed.

For example, the data on caseloads provided monthly by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to the General Assembly should be included in the Caseload Estimating Conference used to determine human service needs in the overall state budget. That is also one of the final recommendations of the “Project Sustainability Commission,” a a special legislative commission headed by Staite Sen. Louis DiPalma, D-Middletown.

While not acknowledging the actual costs, which pay for entitlement services under provisions of the Americans With Disabilities Act, the General Assembly has often criticized the state’s developmental disabilities system for running over budget.

The governor typically relies on the November caseload and revenue estimating conferences to draw up the budget that is submitted to the General Assembly in January. The legislature, in turn, relies on more finely tuned caseload and revenue estimates in May to finalize a spending plan for the next fiscal year.

Monitor’s Numbers “Illustrate” Solutions

Antosh’s report includes five sets of fiscal projections that can best be described as starting points for discussion rather than cost estimates for system-wide change. For reasons related to the language of the consent decree, the monitor’s numbers cover individuals who were identified in confidential documents between 2013 and 2016 and today make up about 67 percent of the entire population with developmental disabilities.

Antosh said the tables of projections and descriptions of the associated costs “illustrate” various options in reconfiguring daytime services for the 67 percent.

The most comprehensive “illustration “ of the cost of re-inventing daytime employment and leisure activities for the specific portion of the population protected by the consent decree would add $35.6 million to the budget in Fiscal Year 2022, which begins next July 1, Antosh said. An additional $14.9 million would be needed in Fiscal 2023 and $15.8 million extra would be added in Fiscal Year 2024.

In addition to protecting a particular class of people, the consent decree is supposed to lead to a system-wide transformation. And state officials have made clear that they intend to include all people eligible for developmental disability services in a reformed system, not just those identified at the time of the consent decree.

The three increases projected by Antosh add up to about $66.3 million a year in three years’ time. Antosh said the increases need not all come from Medicaid funding but draw on a variety of other public and private sources.

The current annual approved budget for the private service providers is about $268.7 million in federal-state Medicaid funds, although the providers’ ability to bill for reimbursement has shrunk since the start of the pandemic.

Actual spending on privately-run services was about $240.8 million in the fiscal year that ended June 30, 2019, according to state budget figures. Antosh said the increases need not all come from Medicaid funding but draw on a variety of other public and private sources.

CPNRI, meanwhile, offered estimates for system-wide reform that would not only increase wages but provide for more labor-intensive supports in the community in keeping with the requirements of the consent decree. The organization’s report said that at a direct care rate of $17.50 an hour, the more labor-intensive option would cost between $112.9 and $158.9 million, depending on the number of hours provided and other variables, including the level of independence of each individual as perceived by the state’s assessment tool.

CPNRI’s report incorporated work completed earlier this year by BHDDH consultants, as well as earlier projections done for the state by different consultants.

COVID-19 Exacerbates Inequities

The pandemic has highlighted the inadequacy of the poverty-level pay of direct care workers in the private sector. The average wage of $13.18 an hour falls below many entry-level jobs in retail, delivery, warehouse, restaurant and janitorial fields, according to the recent report from CPNRI.

That rate is also nearly $5 less than the $18 minimum hourly rate the state pays its own employees to do the same work, running a small parallel system of group homes for about 125 adults with developmental disabilities.

The years-long difficulties faced by providers in recruiting staff have reached critical proportions during the COVID-19 pandemic, leaving many individuals without services and crippling the agencies’ ability to generate income.

The crisis has been nine years in the making.

In 2011, the General Assembly devalued the private provider system when it adopted a new reimbursement model and budget cuts that were justified with an executive branch memo that simply said providers could deliver the same services with less money.

The $26- million budget cut resulted in layoffs and slashed wages. Entry-level positions for caregivers, once the starting point of a career ladder for caregivers who did not necessarily have college degrees, became minimum-wage, dead-end jobs.

At the time, the Department of Behavioral Healthcare, Developmental Disabilities (BHDDH) ignored the recommendation of an outside consultant who said direct care workers should receive a minimum of $15 an hour within a year’s time.

The state pleaded poverty in the aftermath of the financial crash of 2008 and 2009, but by 2011, most other states were either holding steady on previous cuts or beginning to reverse reductions in human service spending, including those for people with developmental disabilities.

The austerity move accompanied a new reimbursement system billed as “Project Sustainability,” intended to equitably distribute available funds to eligible adults with developmental disabilities. The reimbursement model incentivized congregate care in sheltered workshops and day care centers – the least costly form of supervision. Subsequently, the DOJ found that an over-reliance on congregate care violated the Integration Mandate of the Americans With Disabilities Act. That finding led to the consent decree.

In a recent report, CPNRI said that COVID -19 has thrust a system developed and funded for congregate care into one that must deliver personalized services to mitigate infection among a vulnerable population.

Long-term effects of neglect on the system prevent providers from being “agile and responsive to meet the demand and needs of the community,” said the report. For example, the reimbursement model assumes that 40 percent of services will be delivered in center-based care, which is prohibited by public health concerns.

Read the court monitor’s report here.

Read the CPNRI report, “System in Crisis” here.






RI Advocates Seek Executive Order To Ensure Patient Rights Of Disabled

By Gina Macris

The need of some people with disabilities to have a trusted person at their side to help them communicate with strangers has run up against the visitors’ ban imposed by hospitals to curb the spread of the coronavirus.

These patients have been traumatized and their medical care jeopardized in a violation of their civil rights, say Rhode Island disability rights advocates.

During the first coronavirus surge in the spring, at the urging of Disability Rights Rhode Island and other advocates, the Rhode Island Department of Health adopted a policy that exempts family members and others who act as caregivers from hospitals’ ban on visitors when patients need assistance to receive the appropriate care and to communicate with hospital staff.

But DRRI now says that the policy is not widely understood, and patients who have disabilities like dementia and autism run a high risk of being traumatized in the hospital, exhibiting new problems that make it more difficult for medical personnel to treat them.

DRRI, the Sherlock Center on Disabilities at Rhode Island College, and the Rhode Island Developmental Disabilities Council are seeking an executive order from Governor Gina Raimondo to get quick enforcement of the policy, especially during hospital admission, when it is urgently needed.

In a letter dated December 2, the executive directors of the three organizations cited 7 specific instances during the last two months in which care was compromised and patients were disoriented and severely upset.

The examples, drawn from “dozens” of complaints, including two concerning patients with severe communications problems who were administered anti-psychotic medication when they became uncooperative.

One was an elderly nursing home resident with dementia and depression who is also deaf and legally blind. She was admitted for a broken hip. Another was a young man with autism who is non-verbal. In addition to being drugged, he was restrained physically. Now he is showing signs of dementia, hospital officials have told his mother, who they continue to bar from the hospital.

The health department policy says that “when a support person is essential to the care of a patient with a disability, including patients who have altered mental status, communication barriers, or behavioral concerns (such as patients with intellectual and/or developmental disabilities, dementia, and/or behavioral health needs), accommodations for the patient should be made so that the patient can be accompanied by the support person.”

The policy goes on to describe the role of the support person in facilitating communication, equal access to treatment and informed consent “in accordance with the civil rights of patients with disabilities.” And it gives wide latitude to the definition of support person, including family members, guardians, and paid and non-paid caregivers and advocates.

The letter to Raimondo emphasizes that “this is not an issue of ‘hospital visitation’ policy, as it has sometimes erroneously been termed, although the language is unfortunately (albeit understandably) contained within ‘visitation’ policy provisions.”

“We understand the reasons for curtailing typical visitation in hospitals during the pandemic, and we fully support such restrictions when they are not essential to an individual’s access to care.”

The letter was signed by the executive directors of the three organizations, Morna Murray of DRRI; Amy Grattan of the Sherlock Center; and Kevin Nerney of the Developmental[ Disabilities Council.

The authors said the Department of Health was to follow up on the policy with a plan for ensuring hospital compliance, but no plan has materialized in the last seven months.

Meanwhile, the three agencies have continued to receive complaints from “dozens of individuals and families.” They have helped the patients and families follow up with the hospitals and officials of the health department, the executive directors said. Some have put off needed medical care for family members with disabilities because of the ban on hospital visitation, they said.

“The bottom line is that violations continue to occur and there does not appear to be any single authority that can be cited quickly and conclusively so that the intended policy can be implemented on the spot, when it is needed most urgently,” the letter said.

Having exhausted other channels over the last seven months, Murray, Grattan and Nerney said, they are seeking a virtual meeting with Raimondo to discuss the need for an executive order “to resolve this alarming situation as quickly and conclusively as possible.”

Federal Judge Asks RI For Quick Action To Increase DD Funding And Avoid Court Order

John J. McConnell , Jr.

John J. McConnell , Jr.

By Gina Macris

Chief Judge John J. McConnell, Jr. has made it clear he is prepared to use the power of the U.S. District Court, if necessary, to ensure the state of Rhode Island provides adequate funding for adults with development disabilities.

That population of about 4000 people is protected by a 2014 civil rights agreement set to expire in 2024, assuming the Court approves.

Time is already drawing short for the state to make the changes necessary to achieve compliance by the 2024 deadline. The process would require approval by the General Assembly and would have to be running smoothly for a year before the state is released from federal oversight.

But the COVID-19 pandemic has added urgency to the situation, because the state’s compliance depends on some three dozen private service providers that are in such shaky ground financially that they won’t survive the next six months without extra cash.

That was the picture presented to McConnell at a hastily-called virtual court hearing on Zoom Nov. 24.

McConnell gave state officials and advocates until Dec. 18 to figure out a solution to providers’ short-range fiscal problems.

McConnell said he saw “two levels of crisis:”

  • an immediate one that threatens the viability of social services for adults with developmental disabilities over the next six months, with conditions changing “second by second, moment by moment, and day by day.”

  • a system-wide crisis around the state’s ability to meet the requirements of the 2014 consent decree.

Since last summer, the state has been engaged in a court-ordered planning effort to devise solutions to the systemic issues and present McConnell with a long-range implementation plan by June, 2021.

But the judge said he called Tuesday’s hearing in response to a preliminary fiscal report from an independent monitor, who said the burdens of coping with the coronavirus pandemic posed more immediate threats to service providers.

Cooperative Solution Preferred

McConnell asked the monitor, A. Anthony Antosh, to convene a “collaborative” public-private group to come up with an immediate funding solution by December 18. The collaboration should include state officials, lawyers for the U.S. Department of Justice, and representatives of the community, including the head of a provider trade association, Tina Spears, McConnell said.

Lawyers for the state, including Kathleen Hilton and Marc DeSisto, framed it as a continuation of an active collaboration that already has resulted in one hazard pay initiative.

McConnell said he much preferred a solution devised by the state and its partners in the community, rather than having to resort to a court order.

But he made it clear that one way or another, he considers it his responsibility, as a judge in the “third and co-equal branch of government,” to protect the population with intellectual and developmental disabilities in Rhode Island.

“The advisable way is for the good and smart people to sign off and figure out how to do it,” the judge said.

After hearing from budget director Jonathan Womer, health and human services secretary Womazetta Jones, and other state officials, McConnell said “there is no doubt we have an awesome team in the executive branch whose hearts and minds and souls are in the right place.”

McConnell acknowledged that “quite a bit of money” ($20 million) has been allocated to developmental disabilities during the pandemic, but he said “it has become inadequate as the system currently exists.”

The state “may have fiscal handcuffs on,” as Womer, the budget director, explained, but “for the Court, it’s of no import where the money comes from.”

The state and “all its entities” are part of a consent decree that enforces the civil rights of adults with developmental disabilities under the Americans with Disabilities Act, McConnell said.

“But make no mistake,” he said. If necessary, “the Court will use all its powers to order the state and all its entities to come up with the money,” he said.

Effects Of Pandemic “Unrelenting”

The trade association representative, Tina Spears, director of the Community Provider Network of Rhode Island, (CPNRI) illustrated the current problem in human terms.

In the first three weeks of November, a single provider agency experienced COVID- 19 infections in four of its 18 group homes. Sixteen staff members and eight group home residents tested positive, with four residents requiring hospitalization. Three staffers had to quarantine at home, and one staff member died, Spears said.

Meanwhile, the agency’s day programming, which included expansive work-related supports and other services, is running at 30 percent capacity, she said, running into debt at an exponential rate.

“The situation on the ground is unrelenting,” she said.

Kayleigh Fischer, Director of Budget and Finance for EOHHS, laid out the various federal initiatives, totaling $20 million, that have helped service providers stay afloat during 2020.

And Womer, the budget director, explained the fiscal challenges posed by COVID-19, which has decimated revenue and has saddled the state with a projected budget deficit of $250 million to $275 million by the end of the fiscal year in June, depending on who’s counting.

“It’s confusing. There are a lot of moving pieces and a lot of federal guidance that’s constantly changing,” he said.

“We have more restrictions on spending now because of the pandemic,” Womer said. “We are reducing spending anywhere we can to contain the deficit,” he said.

The state can spend federal grant money like the $1.6 billion allocated to Rhode Island for coronavirus relief, Womer said, but among the exclusions are spending for workforce bonuses, as well as replacing state revenue in the federal-state match for the Medicaid program.

Medicaid is the program that funds the developmental disability service workforce.

Spears Highlights Below-Market Funding

Spears acknowledged that without the emergency funding the state has allocated so far, the developmental disability service system already would have folded.

She said she appreciates the fiscal challenges Womer described, but “this has been the rationale for underfunding our workforce for the last decade.“

In 2011, the state deliberately set reimbursement rates for private providers of developmental disability services below market costs, Spears said. “This fact cannot be overstated,” she said.

The rate-cutting, which resulted in layoffs and sharp wage reductions, has been documented in an exhaustive $1.1 million study commissioned by the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, (BHDDH), and by a separate special legislative commission.

Over time, Spears said, the flawed fiscal foundation of the reimbursement model has made it increasingly difficult for providers to recruit and retain qualified workers, a situation that has only been exacerbated by the pandemic.

Today’s average pay for direct care workers is $13.18 an hour, but provider agencies say they must pay $25 to $30 an hour to get workers to go into COVID-positive group homes or homes where residents are in quarantine, according to Antosh, the court monitor.

Antosh has proposed the state deploy $2 million a month from unused developmental disability funding to boost the pay of direct care workers to $20 an hour and cover other expenses related to COVID-19.

Separate from Antosh’s proposal, Spears said, CPNRI has asked Governor Gina Raimondo for COVID Cares Act relief funding for incentive pay for workers in coronavirus-positive group homes and for emergency relocation funds. These funds would be used for temporary quarters to make sure that COVID-negative group home residents can be separated from housemates who are infected.

She did not provide additional detail on that pandemic-related funding request.

Instead she focused her remarks during the hearing on separate recommendations for addressing the structural problems in the fee-for-service reimbursement model.

The state should raise entry-level wages to $17.50 an hour immediately, with a boost to $20 an hour in the fiscal year beginning next July 1, she said. Spears said the state has received an increase in the federal share of the federal-state Medicaid program which has not been passed along to service providers.

In addition, there should be an expedited, yet comprehensive, review of the rate structure that includes the cost of implementing policies mandated by the 2014 consent decree, Spears said. The current rate structure does not support the agreement, she said. She said changes in the rate structure should be ready to be incorporated in the budget that begins next July 1.

The DOJ has found that the overhaul of the developmental disability service system adopted in 2011 incentivized segregated care, in violation of the Integration mandate of the Americans With Disabilities Act.

During the court hearing, Womazetta Jones, the Health and Human Services Secretary, said she wants to work with service providers to do what is feasible and equitable, given all the needs of vulnerable populations.

McConnell replied to Jones:

“As a citizen, I have long admired your service,” he said.

But he pointed out that Rhode Islanders with developmental disabilities have a protection that other vulnerable populations do not.

The DOJ found, and the state agreed, that those with developmental disabilities have experienced violations of their constitutional rights “that can’t continue,” the judge said.

“I don’t want to disagree with anything, but I want to focus on why we are here,” McConnell said.

New Olmstead Consent Decree Coordinator To Guide Court-Ordered ADA Compliance in RI

By Gina Macris

Rhode Island is looking for someone to coordinate its compliance with a 2014 federal civil rights agreement affecting adults with developmental disabilities – for the sixth time in as many years.

The state created the position of Consent Decree Coordinator at the insistence of an independent court monitor who wanted someone with the clout to break through the “silos” of three departments of state government and hammer out an integrated response to the compliance steps in the agreement.

Since the spring of 2019, the position has been filled by Brian Gosselin, the Deputy Secretary of the Executive Office of Health and Human Services and its former Chief Strategy Officer.

Brian Gosselin

Brian Gosselin

His tenure has been marked by controversy that has included a dispute – or misunderstanding, as Gosselin put it- over the independence of a community organization which was settled only by a letter from the U.S. Department of Justice.

Members of the community organization, the Employment First Task Force, have more recently described Gosselin’s consent decree work as “invisible.”

Now the state is under a court-ordered timeline to implement sweeping changes and it has decided to seek an independent contractor, reporting to Claire Richards, Governor Gina Raimondo’s Executive Counsel, to become the consent decree coordinator.

Louis DiPalma

Louis DiPalma

The move won kudos from State Sen. Louis DiPalma, D-Middletown, the General Assembly’s most prominent watchdog on services for adults with developmental disabilities.

“I applaud the state, specifically Governor Raimondo, for elevating the position, by having the CDC (consent decree coordinator) report directly to her office, independent of any state agency,” DiPalma said in a statement.

However, Kerri White, Director of Public Affairs for EOHHS, said that the new consent decree coordinator will not be the first to report to the Governor’s Executive Counsel.

“The new Consent Decree Coordinator will continue to work with the established EOHHS, BHDDH, DHS and RIDE team but will have an avenue of escalation through the Governor’s Executive Counsel in order to maintain the compliance momentum achieved through the previous Consent Decree Coordinator,” White said in a statement.

She referred to the agencies involved in the state’s combined consent decree response, including the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), the Department of Human Services (DHS), and the Rhode Island Department of Education (RIDE), as well as the Executive Office of Health and Human Services, which supervisory authority over BHDDH and DHS.

White said both Gosselin and the first coordinator, Andrew McQuaide, have reported to Claire Richards.

Midway through McQuaide’s tenure, his position in the bureaucratic heirarchy was lowered, when he was transferred to BHDDH. Three successive coordinators, Mary Madden, Dianne Curran, and Tina Spears, all worked from EOHHS.

Madden, who succeeded McQuaide, and Curran, who followed Madden, both had “substantial interaction” with Claire Richards, White said. Spears succeeded Curran. Gosselin, who by that time had twice served as interim coordinator, took over from Spears.

The appointment of Gosselin as coordinator in 2019 sparked criticism in the community, most notably from DiPalma, who said the choice of a salaried employee with loyalties to the state posed a conflict of interest.

“If you’re working for the state, I don’t know how you work for the 4,000 people” the consent decree seeks to protect, DiPalma said.

At the time, an EOHHS spokesman said Gosselin would bring “stability” to the coordinator’s job, and the state’s principal lawyer for the consent decree case said it was immaterial, legally, whether the consent decree coordinator was a state employee or an independent contractor.

DiPalma agreed that stability was critical but said “no rationale has been given for why we have had five coordinators in the last five years.”

Later in 2019, members of the Employment First Task Force, a community-based advisory organization created by the consent decree as a bridge between the public and government, told the DOJ about a disagreement with Gosselin.

They said Gosselin had attempted to curb the group’s contacts with the DOJ unless a particular outreach attempt had state approval. The matter escalated, until the DOJ sent a letter to the state’s lawyers that clearly underscored the independence of the Task Force.

DOJ lawyers said they hoped the situation was indeed a misunderstanding, as asserted by the state. The letter went on to say that members of the Task Force are “independent stakeholders with a role in the successful implementation of the consent decree.”

“Indeed, any limitation on open communication would undermine the intended autonomy of the Task Force,” the DOJ letter said.

Until a few days ago, Nov. 17, it was not clear that the state was, in fact, looking for a new consent decree coordinator to succeed Gosselin.

Earlier in November, a BHDDH spokesman said that the state had not advertised for a consent decree coordinator but had sent out a posting to state-contracted temporary staffing agencies for “temporary project management support” to “help organize our pathway to 2024”. That is the year the consent decree is scheduled to expire, assuming full compliance is achieved. The opening was advertised from Oct. 19 to Nov. 9, a BHDDH spokesman said.

“The State recognizes and appreciates Brian Gosselin’s great work on the consent decree and the many other projects that he oversees in his role as Deputy Secretary & Chief Operating Officer for the Executive Office of Health and Human Services,” said the BHDDH spokesman, Randal Edgar.

“Our team structure will remain in place and our key points of contact for the Court Monitor and the Community will remain unchanged,” he said.

“The State team values all of the stakeholder partnerships and recognizes the need for responsiveness to stakeholder concerns,” Edgar said.

The project management job description appeared to be very similar, if not identical, to that of the consent decree coordinator.

After requests for clarification from Developmental Disability News, White, the EOHHS spokeswoman, said that to eliminate any confusion, the state planned to re-post the position with the title of Consent Decree Coordinator.

“Since we are using a staffing agency to hire the Coordinator, we were limited to a prescribed list of job titles from the third-party staffing search agency. We understand this has caused confusion,” White said in an email.

White said the staffing agency that provides the successful candidate will pay the new consent decree coordinator and then bill the state. The budget for the consent decree coordinator is $100,000 a year. That allocation has not been used since Gosselin was appointed consent decree coordinator. Gosselin makes $146,655 as deputy secretary of EOHHS, according to state payroll data.

He will remain in the coordinator’s post during the transition, White said.



Court To Hear Plan To Shore Up RI DD Providers

By Gina Macris

A federal court monitor says Rhode Island must release $2 million a month designated for adults with developmental disabilities to keep service providers afloat between December and June.

The money would be used exclusively to recruit and retain new workers and boost the pay of existing staff to a minimum of $20 an hour, as well as cover the cost of personal protective equipment and other expenses related to COVID-19.

A. Anthony Antosh submitted a three-page report outlining the rationale for his plan to the U.S. District Court Nov. 18 and asked the state to tell the court how it will address the recommendations by Nov. 30. Chief Judge John J. McConnell has moved up the deadline, scheduling an on-line hearing on the status of consent decree compliance at 9 a.m. Tuesday, Nov. 24.

Antosh said that a rise in coronavirus cases has affected the population with intellectual or developmental disabilities in several ways:

• More people are sick

• Private services providers and families independently managing their loved ones’ programs can’t find staff

• The number and frequency of employment-related services and supports for community activities required by the consent decree has declined

Under the current fee-for-service system, providers are increasingly constrained in their ability to file claims with the state, exacerbating their already-precarious financial condition.

Antosh indicated that the state could release $2 million a month to service providers for the next six months because average monthly spending has decreased by roughly that amount from April through October, when compared with the previous six-month period.

He warned that the consortium hired by the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to review the system top to bottom concluded that private provider agencies were fiscally “fragile and profoundly undercapitalized” even before the pandemic hit. Now their financial position is even worse, Antosh said.

Private service agencies, which support about 83 percent of the population protected by the consent decree, are using most of their resources to serve adults in group homes, where COVID-19 cases are multiplying, Antosh said. Citing a daily report of new cases provided by BHDDH, he said 28 percent of all positive cases in residents, 35 percent of all positive cases in staff and 21 percent of all hospitalizations have occurred in the past six weeks.

A total of 580 staff and residents in 147 group homes – about half of the 291 congregate care settings in the state – have tested positive since the pandemic began, Antosh said.

Source: A. Anthony Antosh, Court Monitor

Source: A. Anthony Antosh, Court Monitor

Several agencies report they are unable to get staff unless they pay them $30 an hour in COVID-positive group homes and $25 an hour in quarantined homes, where the COVID status is uncertain. Even then, they cannot find enough workers to fill the state staffing requirements, Antosh said.

People with developmental disabilities living in family homes, meanwhile, “are receiving only limited supports related to employment and integrated community and day activities,” the monitor’s report said.

The monitor said the state “has demonstrated good faith in attempting to address the impact of COVID-19” in multiple ways, including:

• Special payments early in the pandemic that allowed providers to bill at pre-COVID rates for two months

• Recent approval of an additional $3 million from the CARES Act to provide up to $1,200 in “payroll support” for existing full time direct care staff or recruitment funds for new staff. That boost is also time-limited, Antosh said.

Despite these and other initiatives, Antosh said, “there is significant concern that, if additional resources are not provided for the remainder of the current fiscal year, providers will be unable to recruit and retain sufficient staff needed to provide the employment and community services required by the Consent Decree.”

Antosh said BHDDH figures show a decrease of $11,444,874 in expenditures for developmental disabilities from April to October, when compared with the previous six-month period, an average of $1,907,479 per month. His plan recommends the state put that money to use by allocating $2 million a month, beginning in December, through the end of the fiscal year June 30, 2021.

As has been the case with other COVID-funding initiatives, providers should submit a proposal and a rationale, Antosh said. He said those who direct their own programs or who live independently or with families also should have access to these funds.

The public may observe the court hearing on line by going to the calendar page of the U.S. District Court and entering the date, November 24, and the name of Judge McConnell. To access the calendar click here.

Visitation Ban Imposed On RI DD Group Homes As COVID-19 Surges Again

By Gina Macris

(This article was updated Nov. 18)

Rhode Island group home residents living every day with intellectual and developmental challenges will now have to cope with yet another hurdle - a ban on receiving visitors or visiting family homes – coming just a week before Thanksgiving.

With the state headed toward a lockdown to contain a surge in coronavirus cases, the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has advised operators of all state-licensed congregate care settings, including 291 group homes for adults with developmental disabilities, to suspend visits of residents with family and others except in “very specific compassionate care situations.”

At the same time, group home operators “must have a process in place, at all times, to facilitate remote communications between a resident and a virtual visitor” through video calls and other applications on cell phones or tablets, according to BHDDH director A. Kathryn Power.

Kevin Savage, the Director of Developmental Disabilities, announced the visitation ban during a quarterly public forum Monday, Nov. 16. He said BHDDH issued the advisory Friday, Nov. 13 to service providers.

Among the 291 group homes for adults with developmental disabilities, 63 staff members and 33 residents have tested positive for COVID-19 in the last two weeks, Savage said, but none have been hospitalized during that time.

Those figures were disputed Nov. 18 by David Reis, CEO of the Fogarty Center, a private service agency, who said that one staff member died of COVID-19 on Monday and four group home residents are currently hospitalized. A BHDDH spokesman said he would make every effort to double-check the state’s figures as soon as possible.

On Nov. 10, the spokesman said that earlier in the year, a total of 12 people had died from COVID-19, including 9 residents and 3 staff members.

Savage recognized the impact that long-term quarantine or social isolation may have on everyone involved. He urged people to use the mental health activities that BHDDH puts out online. For the BHDDH COVID_19 resources page, including mental health tips, click here.

He also promoted a new series of free, virtual workshops for caregivers sponsored by the Rhode Island Parent Information Network, starting November 17.

Called “Powerful Tools for Caregivers,” the 90-minute virtual workshops feature six weeks of group sessions aimed at helping caregivers cope with issues involving stress management and communication. To learn more or sign up, call the Community Health Network at 401-432-7217 or visit www.ripin.org/chn. The Community Health Network is an initiative of the RI Department of Health administered by RIPIN.

In the wake of reduced social services resulting from the pandemic, Savage indicated that individually-allocated budgets may be used for supports other than staff time, like cell phones or tablets that would help those with developmental disabilities keep in touch with families and friends.

Those who don’t know how to go about requesting the technology, or want to explore other options for their budgets, should start with their social caseworkers, and if they can’t be reached, their supervisors, Savage said. Social workers “won’t get in trouble” if their supervisors are called, he said in response to questions from the online audience. If all else fails, he advised, those seeking information should call the main number at the Division of Developmental Disabilities. That number is listed as 401-462-3201 on the BHDDH website.

Families Struggle While Federal Judge Awaits Progress Report On RI DD System Reform

By Gina Macris

Tonya LeCour, a teacher who is scheduled to return to work Sept. 1, also serves as the sole caregiver for a family member with developmental disabilities.

What will happen to her job if she can’t find daytime supports for the person who depends on her?

LeCour was among several participants who sounded similar concerns at a virtual forum hosted online by the Rhode Island Division of Developmental Disabilities Aug. 17, with technical assistance from the Rhode Island Parent Information Network.

The comments reprised the July 30 testimony of Carol Dorros, M.D., who told Chief Judge John J. McConnell, Jr. of the U.S. District Court of her experience caring for her adult son with developmental disabilities fulltime, and her inability to practice medicine, since the COVID-19 pandemic hit Rhode Island in March.

Those familiar with the developmental disabilities community say they believe there are hundreds of people facing wrenching stituations similar to those described by Dorros and LeCour.

Rhode Island is now days away from a court-imposed deadline of August 30 – the first of six such target dates – to outline its strategies for shoring up the developmental disabilities system in the short term and ensuring it complies in the long run with a 2014 consent decree seeking to enforce the Americans With Disabilities Act.

The court’s review comes against the background of strained state finances.

The state budget office has sent a memo to all department heads, including A. Kathryn Power, director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to submit budget proposals for the next fiscal year that cut overall spending by 15 percent.

In a statement, a spokesman said “BHDDH, like all state departments, is working with its financial team and program managers to assess all options in meeting the 15 percent reduction in FY 22 spending, per the OMB (Office of Management and Budget) guidance.”

At the same time, the state Division of Developmental Disabilities has convened several “workgroups” to tackle the issues, and, according to McConnell’s order, is expected to submit a report Aug. 30 that will “describe the process or strategy” for addressing the problems, the timeline for resolving them, and the particular agency or agencies responsible for each item. ( Update: The report was submitted to an independent court monitor, A. Anthony Antosh, who said it was under his review the week of Sept. 6 and would be submitted to the court when the review is finished.)

The developmental disabilities issues are complex. They include include reimbursement rates keyed to staffing ratios that were designed for congregate care and do not translate well to community activities.

For example, the reimbursement structure may require a support person to take along five people with the same budget authorization on a community activity, whether or not their needs or interests fit into the purpose of the outing. Conversely, staffers may have to jump through hoops to come up with an activity that will appeal to all members of the group.

People receiving services may opt for one-on-one assistance, but that decreases the number of service hours during the week. A typical funding authorization for one person translates into about six hours a week of one-on-one help, according to calculations of the Community Provider Network of Rhode Island, a trade association.

In re-shaping the system, the state has at its disposal a recently-completed 134-page report from the New England States Consortium Systems Organization (NESCSO), which was hired more than 18 months ago at a cost of $1.1 million to conduct a comprehensive study that grew out of increasing demand for a review of rates paid to private providers of developmental disability services.

At the request of BHDDH, NESCSO’s consultants did not make specific recommendations but conducted an exhaustive assessment of the current y situation and presented options for change that the state might consider.

NESCSO described the financial position of the three dozen agencies providing services as “tenuous,” re-affirming interim findings made before the pandemic hit.

The report suggested that an increase in long-term employment among adults with developmental disabilities could save the state millions of dollars in the long run that would otherwise be spent on daytime supports.

However, increasing employment, a goal of the consent decree, would require an up-front investment in employment-related supports and retaining the staff necessary to carry them out.

NESCSO estimates that a 33 percent increase in wages, now an average of $13.18 for front line workers, will result in a 50 percent reduction in turnover, which ranges up to 58 percent in some agencies.

BHDDH has not made any public comment on the report.

In the meantime, service providers seem to be keeping a lid on the pandemic in group homes but are struggling to provide scaled-up daytime supports that meet safety guidelines under the current funding structure.

As of Aug. 25, a total of 164 group home residents had tested positive since the start of the COVID-19 pandemic, three more than reported July 21. Of that total, 48 have been hospitalized and 10 have died, according to a BHDDH spokesman. The numbers indicate that the five people who were hospitalized in late July have all been discharged. The most recent death was reported in June.

During the Aug. 17 public hearing, Kevin Savage, director of the Division of Developmental Disabilities, said, “we don’t want to just go back to doing things the old way.”

He offered to speak privately after the meeting with several individuals, including LeCour, the teacher, and a woman whose sister was in a group home and having problems eating as a result of the social isolation brought on by the pandemic.

Linda Ward, executive director of Opportunities Unlimited, chimed in with the providers’ perspective:

“It’s not about re-opening (daytime services) but meeting a person’s needs one person at a time,” she said. Funding limitations may dictate that individuals get one day a week of services, she said.

And there’s no “community” to access except for a socially distanced one, Ward said. Moreover,

staff are concerned about exposing themselves and their families to the virus, she said.

“I know that’s not helpful to families desperate for supports but we have to do it one at a time,” Ward said.

Meanwhile, the state’s finances, battered by the COVID-19 pandemic, remain in flux. Much could change before the budget is finalized for the 2022 fiscal year, which begins next July 1. The state budget director, Jonathan Womer, says as much in his memo to department heads dated Aug. 7.

In terms of developmental disabilities issues, Judge McConnell has ordered officials in both the executive and legislative branches, who hold the state’s purse strings, to participate “as needed” in a year-long review of 16 specific issues of concern, and to help find solutions to them.

BHDDH has held initial meetings of five “workgroups” to address issues raised in the judge’s order. In its most recent developmental disabilities community newsletter, the agency put out a call for volunteers interested in working on one of the five committees.

“We are looking for individuals receiving services and family members to participate in their choice of one of five workgroups to add their expertise and input into the system reform,” the newsletter said.

Anyone interested may email Cindy Fusco at Cynthia.Fusco@bhddh.ri.gov.

The newsletter described the workgroups as follows:

1. Eligibility Process Workgroup: This workgroup will look at the process for determining the support needs of each individual and the need to consolidate the application for all pertinent RI services into one process.

2. Appeals Process Workgroup: This workgroup will look at the appeals process for individuals as it relates to eligibility, level of need, or funding level, including the L9/S109 (appeals) process for requesting additional funding.

3. Individual Budgets and Authority Workgroup: This workgroup will look at the process and timeline for developing annual individual budgets responsive to individual needs, allowable costs, and flexibility.

4. Fiscal Workgroup: This workgroup will look at authorizatons, rates, and billing units.

5. Contracts Workgroup: This workgroup will look at the timeline and process by which individuals contract with providers, billing procedures, and how to increase individual control over their services and how their budget is spent.

OP-ED: RI Must Do Better By People With I/DD

By Terri Cortvriend

The COVID-19 pandemic has hit hardest the areas and populations that were already struggling, since they had the fewest resources for adaptation and safety. We’ve seen the outsized effects on the poor and on minorities. Another group that it has been disproportionately hurt is adults with intellectual/developmental disabilities (I/DD).

Photo Courtesy of RI Rep. Terri Cortvriend

Photo Courtesy of RI Rep. Terri Cortvriend

Here in Rhode Island, adults with I/DD have not been provided adequate resources for many years. Before the pandemic, a federal judge was already mulling the possibility of ordering further overhaul of our troubled system of services. And then the pandemic shut down most day programs and employment opportunities, leaving this very vulnerable population without critical supports. Residents and underpaid staff at group homes have been at risk for illness, and those living at home face isolation and a reduction or loss of in-home support services. Agencies that serve them, which have mostly operated on the financial brink for years, are in danger of going under permanently.

The challenges of the pandemic and recovery from it threaten the already sub-par progress the state has made toward fixing this system. A Senate task force led by my colleague and fellow Aquidneck Islander, Sen. Louis DiPalma, has been shedding light on the obstacles, which include a fee-for-service structure that discourages innovation and integration.

Rhode Island must do better for its residents with I/DD. Every individual served is a deserving person whose needs include meaningful activities that support their personal goals and a valued role in their communities.

I urge my colleagues in the House to get on board with the Senate, where Sen. DiPalma has long worked to call attention to the need for better funding and a more workable system of supports for adults with I/DD. We need to join him in fully recognizing and supporting the importance of the work that must be done to provide enriching and effective services to Rhode Islanders with I/DD. We may be deeply ashamed of our state’s history – from the not so distant past – of “dumping” people with I/DD at the notorious Ladd School, but have we really come very far if we are not providing them with the means they need to have a fulfilling life in the community?

RI State Representative Terri Cortvriend, a Democrat, represents District 72 in Portsmouth and Middletown.




Judge Signals Stepped-Up Oversight Of RI Olmstead Consent Decree

By Gina Macris

John J. McConnell, Jr.

John J. McConnell, Jr.

Chief Judge John J. McConnell, Jr. of the U.S. District Court is gearing up to order a soup-to-nuts overhaul of Rhode Island’s troubled developmental disability service system and he wants a detailed plan hammered out during the next year. 

Chronic problems exacerbated by the COVID-19 pandemic have pushed McConnell’s long-simmering concerns over the fiscal stability of developmental disability services “front and center,” as the judge put it during a public hearing in mid-May.

At that time, he asked an independent court monitor to recommend steps for ensuring the long-term survival of a reformed system that will be in full compliance with the Integration Mandate of the Americans With Disabilities Act (ADA). The proposed directive resulted from the monitor’s recommendations.

The order, sent to lawyers for comment earlier this month, says the state must fix systemic problems that pose “fiscal and administrative barriers” to compliance with a 2014 civil rights consent decree, which calls for integrated work and non-work activities based on a 40-hour week of services.

The barriers to compliance include the major pillars of a fee-for-service system the General Assembly enacted in 2011 that incentivized segregating adults with developmental disabilities in sheltered workshops and day care centers, in violation of the ADA’s Integration Mandate, according to findings of the  U.S. Department of Justice (DOJ). The Integration Mandate was re-affirmed by the U.S. Supreme Court in the 1999 Olmstead decision.

Although the last sheltered workshops closed in 2018, some center-based day programs were still in operation before the pandemic hit.

Hearing Scheduled July 30

McConnell has given state and federal lawyers until July 30 to  tell him why his three-page directive should not move forward as a formal order, with a deadline of June 30, 2021 to develop a new system that meets the needs of the roughly 4000 individuals it serves.

Lawyers for the state and the DOJ have responded with an agreed-upon list of topics to be discussed at an upcoming hearing on the status of consent decree compliance.

The agenda, filed with the court July 23, said the state would address both long-term compliance with the consent decree and the immediate pressures posed by the COVID-19 pandemic on the developmental disabilities system.

Specifically, the lawyers said they would present information on:

  • Integrated employment and day services and the state’s phased reopening

  • Support for providers and families during the continuing COVID pandemic

  • Preparations for a potential second wave of the pandemic

  • The fiscal issues and administrative barriers identified by the judge and a plan by the state to resolve them in phases, beginning with quarterly funding authorizations, staffing ratios, and the requirement to bill for daytime services in 15-minute increments.

Finally, the agenda said the discussion would include the state’s plans for substantial compliance with all requirements of the consent decree by 2024, the year it expires.

The judge’s proposed order would involve the state’s Medicaid administration, the Governor’s office, and the General Assembly in developing solutions to problems in the developmental disability service system and would require progress reports every two months between August 30 and June 30, 2021.

McConnell also wants the state to collaborate with families and providers in developing their plans.

McConnell is expected to take up the proposed order during the remote video hearing on July 30, beginning at 2 p.m. The public may sign in to attend no later than 1:45 p.m. through video or telephone, with instructions posted on the court’s public access web page, here.

COVID-19 Forced Near Shutdown Of Day Services

The coronavirus has hit hard at gains made in the number of regular jobs worked by adults with intellectual or developmental disabilities and the time they spend enjoying non-work activities as part of their communities.

A spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) indicated that about 35 percent of those who had jobs March 1 were still working at the end of May.

Non-work recreational and other activities also have been decimated, but no figures were available from BHDDH about the number of people who don’t have any daytime supports or can’t get the same number of service hours they had before the pandemic.

Parents expressed alarm about a lack of guidance on the resumption of services during a July 21 on-line forum hosted by the Community Provider Network of Rhode Island (CPNRI.)

Susan Willemsen, a parent, wrote in the chat box that accompanied the video meeting: “This is very scary, especially for the parents who need to work and your child does not understand the situation. It is very difficult to be home working 40 hours to survive and take care of a child who is 100% dependent on you. Trying to understand where we go from here.”

Tina Spears, executive director of CPNRI, said providers remain in a precarious financial position and called on the entire developmental disabilities community to press state and federal officials for more funding and priority status for group home operators to conduct on-site testing and gain access to personal protective equipment.

By all accounts, some three dozen private service providers licensed by the state to support adults with developmental disabilities were in tenuous financial condition before the coronavirus pandemic hit Rhode Island in March.

Coping with the pandemic has further exposed gaps in funding and service delivery, which in turn raise questions about the providers’ ability to survive long enough to benefit from a court-ordered restructuring without more immediate and urgent intervention. 

For example, the need for social distancing calls for one-on-one or small group staffing, preferably with the same clients consistently matched to the same support people. But the current funding structure typically will pay for six hours a week of one-on-one support, according to Spears.

Judge Spells Out Requirements

McConnell, meanwhile, indicated he wants change from the first moment an individual or family applies for services from the Division of Developmental Disabilities (DDD).

McConnell said there is a need to consolidate application procedures “for all pertinent RI services into one process.”  That includes streamlining the process for determining Medicaid eligibility and eligibility for developmental disability services, respectively, as well as any other state-funded supports a person might need.

Within the developmental disability service system itself, the judge wants the state to “review, address, and develop a strategy” for resolving problems in the following areas:

  • The process and timeline for determining DDD eligibility and individual budgets, as well as the process and timeline in which individuals select private provider organizations.

  • The process in which families and service providers appeal DDD’s decisions on eligibility, designated level of need, or funding level.

  • The requirement that providers document each staff person’s time, in connection with each client, in 15-minute increments during the day as a condition of reimbursement.

  • Reimbursements that are linked to specific staff-to-client ratios. McConnell didn’t spell out the details of how those ratios hinder integration, but one provider has offered a memorable example: The provider said the staffing ratios forced him to group together five clients with widely differing interests for job exploration in one community setting where he could supervise without help from another staffer. 

  • Funding authorizations for each client that last only three months at a time, with no ability to carry forward any unused portion of the budget beyond the designated fiscal quarter. That feature, combined with the fee-for-service structure of the billing services, means that unless there is 100 percent attendance by all persons at all times, the spending ceiling can never be reached. A consultant’s study several years ago found that providers billed for an average of 85 percent of funding authorizations.

    The requirement that people with intellectual and developmental disabilities, recognized as life-long conditions, must periodically re-establish their eligibility status for services.

McConnell also asked the state to come up with:

  • A clear definition of functions and activities for which funding is permitted, along with the associated rates for each.

  • Different funding levels for different activities that are “responsive to individual support needs.”

  • Guidance on combining individual budgets at the request of the people involved

With the state shutdown beginning in March, service providers shifted their attention to the safety of those in group homes.

A total of 10 group home residents have died from COVID-19, according to a BHDDH spokesman. As of July 21, 161 group home residents had tested positive and a total of 48 had been hospitalized at one point or another. Five people were in the hospital on July 21, the spokesman said.

Spears, the CPNRI director, explained during the virtual public forum that providers have faced unprecedented costs in securing personal protective equipment for staff, carrying out aggressive cleaning protocols and paying for overtime, while being unable to bill the state for many services.

Providers did get some emergency federal assistance channeled through the state, albeit less than what was originally promised, to continue operations through periods of the highest risk and to give temporary pay raises to staff. But those supports have now ended, Spears said, and there’s “no grand way or plan forward” for moving the system to a new normal.

Spears said a top priority is permanent pay hikes for staff, who have been chronically underpaid and have “a thousand reasons” during the pandemic to stay home.

State officials are waiting for Congress to decide on a second stimulus package before moving ahead to set the budget for the current fiscal year. The pace of budget deliberations is expected to pick up in early August, said State Sen. Louis DiPalma, D-Middletown, who is first vice-chairman of the Senate Finance Committee.

In a brief interview the day after the meeting, Spears said the imperative for moving forward with a plan for re-opening developmental disability services should flow from the state’s legal and moral responsibility, not the budget.

State officials can “sit in a holding pattern and worry about the budget all you want, but these are human lives we’re talking about,” she said.

CPNRI To Host Virtual Forum Tuesday On COVID-19 Impact On RI DD Services

By Gina Macris

Rhode Island’s developmental disabilities community will have a chance to discuss the impact of COVID-19 on services for adults who are intellectually or developmentally challenged during an online forum hosted by the Community Provider Network of Rhode Island (CPNRI) July 21.

The hour-long session, to be facilitated by Tina Spears, executive director of CPNRI, is designed as “an open conversation,” enabling participants to voice concerns and ask questions about what lies ahead for Rhode Islanders with developmental disabilities, according to an emailed invitation.

“We want to ensure everyone understands the current state of the system,” CPNRI organizers said. They also said they want to provide a forum for discussing “actions we can take to ensure the stability of our services moving forward,”

The on-line session, with a closed captioning option, will be Tuesday, July 21 from 5:30 p.m. to 6:30 p.m. Pre-registration is required, as the on-line platform can accommodate no more than 100 participants. If the demand exceeds capacity, CPNRI said, it will host a second forum later in the summer to ensure that all interested participants are accommodated. To pre-register, please click on this link.

Hospitals Allegedly Violate RI DOH Visitation Policy For Patients With Disabilities

By Gina Macris

Family members of people with developmental disabilities reportedly are being barred from visiting hospitalized patients despite a revised Rhode Island state policy that allows essential support persons to help facilitate their care.

Both Disability Rights Rhode Island (DRRI) and the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) have received complaints that hospitals are preventing caregivers from seeing patients with disabilities.

DRRI is seeking additional feedback from the community on how the policy is being implemented when those with intellectual or developmental disabilities are hospitalized, by phone at 401-831-3150 or by email at contact@drri.org.

The alleged hospital policy violations come in the face of apparent improving health statistics, which indicate that no deaths of residents of group homes for adult s with developmental disabilities have been reported for nearly three weeks.

Still, families of persons with intellectual and developmental challenges have complained that hospitals are barring them from visiting loved ones, contrary to a Department of Health policy adopted in early May that says essential support persons can accompany patients with disabilities to facilitate communication, equal access to treatment and the provision of informed consent.

In one particular case, Kevin Savage, the Director of the Division of Developmental Disabilities, contacted hospital “risk management” officials, who agreed to help, according to a BHDDH spokesman. The spokesman said the situation still was still not resolved to the family’s satisfaction.

In addition, the BHDDH director, A. Kathryn Power, contacted Dr. Nicole Alexander-Scott, director of the Department of Health. She, in turn, “reached out to all hospital CEOs to reinforce the RIDOH guidance in order to reiterate the rights of people with I/DD,” according to the BHDDH spokesman.

DRRI’s counterpart in Connecticut, along with other statewide and national advocacy organizations, had tried since April to persuade that state’s public health officials to allow support persons to help hospitalized patients with disabilities, but ended up filing a formal discrimination complaint with the Office of Civil Rights of the U.S. Department of Health and Human Services on behalf of three patients in separate hospitals.

That complaint was settled with a change in Connecticut’s hospital visitation policy, announced by Disability Rights Connecticut on June 9.

In Rhode Island, a total of 158 people living in group homes for adults with developmental disabilities have tested positive for COVID-19. The total includes 10 persons who have died, with the most recent death reported June 2, according to BHDDH spokespersons.

On a related front, a federal judge is seeking guidance from an independent monitor on ways community-based integrated services should change in light of the coronavirus. Daytime services have all but stopped since the pandemic hit Rhode Island in March, and the state has not yet adopted a formal plan for them to resume on a large scale.

The U.S. District Court and the U.S. Department of Justice have jurisdiction over the state’s daytime services under a 2014 consent decree intended to correct Rhode Island’s segregation of adults with developmental disabilities, a violation of the Americans With Disabilities Act.

Chief Judge John J. McConnell, Jr. has recently ordered the independent court monitor in the case to prepare a report by the end of the month on how to approach community-based integrated services in light of the lingering health and safety concerns posed by COVID-19. 

The monitor, A. Anthony Antosh, is expected to submit the report by the end of June. McConnell has scheduled a court hearing on the consent decree July 30 at 2 p.m. The hearing will be accessible to the public by telephone and through the internet’s Zoom service.

Racism Compounds Stresses of COVID-19, Say RI DD Community Voices

Iraida Williams

Iraida Williams

By Gina Macris

(This article was updated June 9 )

A Rhode Island man with developmental disabilities, stuck at home since the start of the COVID-19 pandemic, is anxious to get back to his regular activities but also is “afraid to take out the trash because he’s black,’’ his mother told a virtual crowd of about 170 people June 5.

Iraida Williams, the man’s mother, spoke during a Zoom forum co-sponsored by the state Executive Office of Health and Human Services (EOHHS) and the Rhode Island Parent Information Network to discuss the hopes and fears of those involved with the developmental disability services. 

Marti Rosenberg

Marti Rosenberg

Marti Rosenberg, the moderator or the forum, replied that “just this morning,  EOHHS  has been grappling with these concerns.”

Rosenberg, director of Policy, Planning and Research at EOHHS, said the leadership wants to make sure that “EOHHS agencies are specifically having those difficult conversations.

 “We need to make sure we have an absolutely specific answer for your son,” she told Williams.

Williams said, “I look forward to hearing back from somebody.”

Until now, quarterly community forums on developmental disabilities have been run by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

But in choosing Rosenberg to moderate Friday’s event, EOHHS signaled a desire to bring the particular concerns of those facing intellectual and developmental challenges to the highest levels of the executive branch of state government.

On June 9, a BHDDH spokesman offered additional context, saying that EOHHS has been helping its member agencies with planning throughout the COVID crisis. Rosenberg had facilitated a number of reopening planning conversations with providers and other community members in partnership with BHDDH and DCYF, and the June 5 Zoom meeting was another in that series.

The meeting was almost entirely given over to participants and their ideas for re-opening regular services. But echoes of ongoing protests against racism in Providence and across the nation were never far from the surface.

Kelly Donovan

Kelly Donovan

Kelly Donovan, who receives state-funded services and is a vocal advocate for herself and her peers, said “people are either antsy to resume their lives or afraid of going out.” In the chat box that accompanied the audio and video of the Zoom meeting, she said she herself is “worried about getting sick and equally worried about the United States turning into a dictatorship.”

Ken Renault of the advocacy group RI FORCE said he had concerns about the neglect or abuse of people with disabilities because of the stresses of the last few months.

Rosenberg said group home residents of color and workers of color have been experiencing even more stresses because of the massive attention to police brutality that has been the focus of widespread protests organized on the heels of the pandemic lockdown.

The COVID_19 pandemic has highlighted the difference between the haves and the have-nots and, and it’s time to recognize the institutional racism in the dividing line between them, said Kevin Nerney, executive director of the Rhode Island Developmental Disabilities Council.

“Yes,” wrote Donovan in the chat box that accompanied the video. “Institutionalized racism is a problem. It is rampant!”

Separately, Nerney and the leaders of Disability Rights Rhode Island and the Sherlock Center on Disabilities at Rhode Island College released a statement decrying the death of George Floyd in police custody in Minneapolis May 25, calling it murder.

“The RI DD Network stands on the side of those who are protesting another needless death, who reject hate, and who demand justice. We are committed to effectuating full inclusion in society and working for the civil and human rights of Rhode Islanders with disabilities of all races, cultural backgrounds and ethnicities,” the statement said. It was issued by Morna Murray of DRRI and Amy Grattan of the Sherlock Center, in addition to Nerney.

Kevin Nerney

Kevin Nerney

During the meeting, Nerney said people with resources have weathered the statewide lockdown with few problems, but the have-nots have struggled.

COVID-19 can be a “springboard for systems change going forward,” Nerney said.

Tina Spears, executive director of the Community Provider Network of Rhode Island, asked what day services might look like as the state re-opens.

“People won’t be able to congregate in the same ways they did before the pandemic hit,” Spears said. It will be “challenging for all of us. How can we administratively and financially do this?”

Thirty percent of daytime services occur in group activities in day centers, according to the independent federal court monitor overseeing the state’s efforts to integrate adults with developmental disabilities in their communities. The monitor, A. Anthony Antosh, has asked that center-based care be eliminated when daytime services resume on a broad scale.

That move would inherently increase costs for providing services because supporting people in the community individually or in small groups is more labor-intensive than overseeing them all in one facility.

(Some agencies are able to provide limited one-on-one or small group services in the community during the pandemic, depending on individual circomstances.)

Nerney said that in an improved system of services, the consumer “has to have full control of planning, evaluation and budget, with assistance from trusted people.”

And the system must move away from congregate care while still giving people a full array of supports, he said.

That last comment sparked push-back from some parents, who said there will always be a need for group homes.

Kevin Savage, the director of the Division of Developmental Disabilities, addressed the issue:

Kevin Savage

Kevin Savage

“If we say we need congregate care, we can’t imagine providing services another way, in-home or living independently,” he said.

“The ultimate goal is people making their own choices,” he said. While the state closed its institution for people with developmental disabilities more than 20 years ago, if people are living in group homes with others not of their own choice, the de-institutionalization is not complete, Savage said.

Since 1994, when the Ladd School closed,  Rhode Island has supported relatively few housing options for adults with developmental disabilities. And housing is a primary concern, particularly for aging parents.

Savage did not address the cost of safe and supportive alternatives to group homes. For example, staffing an apartment with two or three residents 24 hours a day is inherently more costly than providing that coverage in a group home setting with four to eight residents.

Claire Rosenbaum, coordinator of adult supports at the Sherlock Center, said during the Zoom meeting that many people with intellectual or developmental disabilities may experience some depression as a result of the continuing isolation and may need mental health supports built into their services.

Other comments touched on a need to enable adults with developmental disabilities to have easy access to technology. Rory Carmody of AccessPoint RI and Casey Gartland of Perspectives explained how they used remote audio and video and other hi-tech capabilities to continue to place and support some clients in jobs during the pandemic and to conduct other activities.

John Susa, a parent and long-time advocate, said the Division of Developmental Disabilities has relaxed “a lot of unnecessary rules” during the pandemic. He said he would like the state to ”keep as many of those relaxations in place” as possible.

Carolyn Maxwell, who directs her daughter’s services, said she is particularly pleased about a rule change that allows her to receive compensation for the work she does with her daughter, Emily.

Maxwell, a teacher, said at the previous community forum in March that she was never able to return to the classroom after Emily was born 27 years ago. At the same time, she has had difficulty finding paid staff to work with her.

Maxwell has helped Emily start an online business called “Love Letters By Emily” that features handmade note cards and art photography incorporating American Sign Language, which Emily uses in daily life.

Speaking via Zoom last Friday, Maxwell said that being compensated as Emily’s caregiver has been a “huge help to us.” She wants the rule change to become permanent.

Savage, the state’s developmental disabilities director, said in mid-May that the relaxed rules on hiring legal guardians and other family members would remain in effect. Savage made the comment during a federal court hearing in mid-May on the way adults with developmental disabilities have fared during the pandemic, in conjunction with a 2014 consent decree that gives the court jurisdiction over state-funded daytime services.

Addressing procedures for re-opening developmental disability services, state officials said they anticipated guidelines for ending the lockdown at group homes to be issued later in the day on June 5. The guidelines were issued June 6. To read them, click here.

Service providers are expected to use the guidelines to develop a plan for re-opening group homes to family visits and other normal comings and goings, said Rosenbaum, the adult supports coordinator at the Sherlock Center. Plans must get approval from the BHDDH before they are implemented. (An earlier version of this article incorrectly said approval must come from the Department of Health.)

Rosenberg said the first set of guidelines will apply only to group homes. A separate second set of guidelines will be issued for day services, she said.

The resumption of day services would follow the same sequence, with the issuance of guidelines for providers to draft plans specific to their agencies.

Photos of themselves courtesy of Iraida Williams and Marti Rosenberg. All other photos by Anne Peters.

COVID-19 Claims 3 More Lives in RI DD Group Homes; Advocates Press For Justice

By Gina Macris

As the death toll from the coronavirus has ticked up in Rhode Island group homes for adults with developmental disabilities during the last two weeks, two community organizations have turned their focus to the multiple aspects of social justice - in health care equity and in issues of race.

As of June 3, a total of 10 group home residents have died from COVID-19, or 3 more than were reported about two weeks ago, on May 19, according to a spokesman for the state Department of Behavioral healthcare, Developmental Disabilities and Hospitals (BHDDH,)

Those who have died are included in a count of 138 persons with developmental disabilities in congregate care who have tested positive for the disease. The total represents an increase of 16 cases since May 19, according to figures provided by the spokesman.

Of all those who have become ill, 17 persons have been sick enough to be hospitalized at one point or another, the BHDDH spokesman said.

While the incidence of coronavirus is on the wane in Rhode Island, Disability Rights Rhode Island (DRRI) has been scrutinizing what it says are discriminatory state health care guidelines which could still be used in the future to ration care if the hospital system becomes overwhelmed.

A spokesman for the Rhode Island Department of Health said DRRI and several disability-related partner organizations have provided “important feedback” that will be considered as health officials move forward.

The developmental disabilities community has been preoccupied in the last few months with issues of equity in access to protective equipment and health care resources for vulnerable people, but ongoing concerns about civil rights should be put in a broader context in which racism permeates, said Tina Spears, executive director of the Community Provider Network of Rhode Island (CPNRI).

Spears and Michael Andrade, President of the CPNRI Board of Directors, issued a statement June 2 saying that CPNRI “stands in solidarity with the people and communities in our state and across the country who continue to bear the physical, emotional, and economic effects of racism” - including people of color who belong to the direct care workforce and families supported by CPNRI.

The statement was prompted by the death of George Floyd, a 46 year-old black man who suffered a heart attack May 25 after a Minneapolis police officer put his knee to the man’s neck for nearly nine minutes. Floyd’s death has roiled the nation, from protests in the streets to politics at the highest levels in Washington.

“We speak out against the historical and current violence against Black, brown, and other members of marginalized communities,” Spears and Andrade said. “As a network, we remain committed to upholding social justice and dismantling systems of oppression and discrimination that further violence and neglect,” the pair said, pledging to work with other like-minded groups throughout the state and the nation to “combat the root causes and outcomes of racism.”

Meanwhile, Disability Rights Rhode Island (DRRI) has recommended changes to eliminate what it says are inherently discriminatory provisions in recent guidelines issued by the state Department of Health that could be used in allocating health care resources.

DRRI acknowledges that the discussion remains theoretical – for now – as hospitals have not exceeded their capacities and emergency facilities set up to deal with an overload of coronavirus patients have remained unused.

In a May 19 letter to the Director of Health, Nicole Alexander-Scott, MD MPH, DRRI and other partner organizations have said the “Crisis Standards of Care”, issued April 25, leave the door open for discrimination against those with disabilities and older Rhode Islanders by allowing health care officials to make subjective decisions about patients’ long-range survival or quality of life after discharge.

In response to a query from Developmental Disability News, a DOH spokesman said the department 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.

DRRI noted that Rhode Island’s principle for ensuring equity in access to healthcare “acknowledges the need for transparent criteria for allocating resources that are free from influence by inappropriate factors such as race, gender, socioeconomic status or sexual identity.” But the letter said that “disability and age” are missing from the list of inappropriate factors. This omission “appears intentional,” since the triage assessments and criteria described in the guidelines authorize “explicit and implicit” consideration of age and disability in excluding patients from access to scarce resources.

Among other things, the guidelines allow hospitals to screen out patients having a “medical condition associated with a short life expectancy” from access to critical healthcare resources, DRRI said. “Because ‘short life-expectancy’ is not defined, hospitals and clinicians are free to interpret the term and make subjective judgments regarding its meaning,” the letter said.

Many people who are aging or have disabilities also experience medical conditions that can be perceived as shortening life expectancy, and are at higher risk for being excluded from consideration based on clinicians’ subjective decisions, the letter said.

Although the guidelines take into account some conditions which are accommodated during the triage process, they fail to recognize pre-existing impairments such as limitations in mobility or speech, which would have an effect on an assessment of traumatic brain injury, DRRI said.

Nor do the guidelines mention federal laws applying to hospitals that prohibit discrimination on the basis of disability and require hospitals to make reasonable modifications to policies and practices to allow persons with disabilities to benefit from the services provided.

In a detailed analysis of the DOH guidelines, DRRI described the pertinent sections of federal anti-discrimination laws: Title II of the Americans With Disabilities Act, Section 504 of the Rehabilitation Act of 1973, and Section 1557 of the Patient Protection and Affordable Care Act (ACA.)

DRRI recommended revising the Crisis Standards of Care to comply with civil rights laws by eliminating criteria linked to survival beyond the illness which prompted the hospitalization at hand and by requiring hospitals to make accommodations for disabilities, like limitations in mobility and communications skills.

It also recommended that DOH broaden the grounds for appeal of triage decisions to include discrimination on the grounds of disability. The current grounds for appeal, permitted only for technical or procedural injustices, are overly narrow, DRRI said. To read the letter in its entirety, click here.

The letter was signed by Morna Murray, executive director of DRRI, as well as Steven Brown, executive director of the American Civil Liberties Union in Rhode Island; Amy Grattan, executive director of the Paul V. Sherlock Center on Disabilities at Rhode Island College; Kevin Nerney, executive director of the Rhode Island Developmental Disabilities Council, Advocates in Action; Joanna Scocchi, director of the ARC Rhode Island Family Advocacy Network; Debra L. Sharpe, executive director of the Brain Injiury Association of Rhode Island; Spears, the CPNRI director, Marc Anthony Gallucci, executive director of the Ocean State Center for Independent Living; and Kim M. Einloth and Kiernan O’Donnell, co-chairs of the Rhode Island Employment First Task Force.

RIPIN, RI DD Agency, Plan Virtual Town Hall on COVID-19

By Gina Macris

How should Rhode Island re-open its services for adults with developmental disabilities as the incidence of COVID-19 wanes?

The Rhode Island Division of Developmental Disabilities and the Rhode Island Parent Information Network have scheduled a virtual meeting on Zoom Friday, June 5, from 10 am. to noon to get public comment on the transition.

Pre-registration is required. To pre-register, click here.

During the registration process, attendees will be invited to choose to participate in one of three smaller group discussions for consumers and families, providers, or advocates.

Participants also may submit questions in advance to BHDDH.AskDD@bhddh.ri.gov 

Pandemic Pushes Worry Over RI DD System Survival “Front And Center” - Judge McConnell

By Gina Macris

Judge McConnell

Judge McConnell

The federal judge overseeing the reform of Rhode Island’s developmental disability system says the COVID-19 pandemic has sharpened his concern about the financial ability of the state and its service providers to meet long-term goals of the consent decree, which mandates integration of the target population at work and at play.

Other participants in a May 18 hearing in U.S. District Court in Providence echoed the judge’s concerns, but they also said the pandemic has created a great opportunity to cement changes that might not otherwise have come as quickly.

“The fiscal health and stability of providers has always been in the back of my mind,” said Chief Judge John J. McConnell Jr., noting that his worry has come “front and center with this crisis.” Stability is “essential for the consent decree to play out and be seen as accomplished,” he said.

The state and federal governments in 2014 agreed to a civil rights consent decree mandating employment-related services to provide access to jobs in the community for people with developmental disabilities as well as supports to allow them to enjoy integrated non-work activities. The decree runs until 2024.

Kevin Savage

Kevin Savage

During the hearing, Kevin Savage, the state’s new Director of the Division of Developmental Disabilities, disclosed immediate financial concerns. He said that the state has not received approval from the Centers for Medicare and Medicaid Services for the second of three advance payments promised to keep private providers fiscally afloat during the height of the pandemic.

On March 26, the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) announced that a total of $15.4 million in federal-state Medicaid funding had been set aside for these so-called “retainer payments” during April, May, and June.

While the April payment has received CMS approval, the one for May has not, Savage said. A BHDDH spokesman later said that $5.1 million in advance payments to providers were made May 15.

Savage said it was “important that the state make that payment” to the providers.

The BHDDH spokesman later elaborated:

“When the retainer payments were first described and provided in Rhode Island, CMS had not issued technical guidance on these types of payments.” Since then, he said, CMS has limited retainer payments to a 30-day period, but that “the state is actively working with CMS to expand this time frame.”

CMS reimburses a little more than half of any Medicaid cost applied to the Division of Developmental Disabilities, but if the federal government ultimately does not approve the May 15 payment to providers, the state will be responsible for the entire $5.1 million.

As to the June advance payment, Savage said during the court hearing that the money will be re-cast as an increase in Medicaid rates that adds up to the same amount originally promised to providers.

He also disclosed that one provider decided to change the type of services it offers and the executive director resigned over the issue. Going forward, Savage said, he understands that particular agency would be “less focused” on the kind of individualized work his division wants to do, but he reserved further comment until he has had a chance to speak in depth with agency officials.

The hearing was streamed via the internet application Zoom, as have been previous U.S. District Court proceedings since the federal court building on Kennedy Plaza was closed in early March at the start of the pandemic. For the first time on May 18, however, the hearing was arranged so that the public could see the participants as well as hear them.

Victoria Thomas, a lawyer for the U.S. Department of Justice, said the DOJ is “very focused” on how those protected by the consent decree will get community-integrated services going forward.

The capacity of providers to deliver those services involves more than funding, she said. The state needs to make administrative changes to ensure a stable system of integrated services and supports.

A. Anthony Antosh, the independent court monitor in the case, pressed for two immediate administrative changes:

● Annual funding authorizations for service recipients to replace the quarterly allocations now in place.

● The end of prescribed staffing ratios according to five funding “tiers,” which are based on perceived levels of disability and do not necessarily reflect the amount of support needed for a task at hand.

Savage said the staffing ratios are written into Medicaid rules, and BHDDH could work administratively with CMS to eliminate them. The ratios were designed for center-based day care and providers have argued that the ratios do not work in an individualized community setting. Families and other advocates also oppose them.

Savage said the quarterly funding authorizations were enacted by the General Assembly and cannot be changed without its approval. The fiscal arm of BHDDH favors quarterly payments, he said.

Melody Lawrence, Director of Policy and Delivery System Reform at the state Executive Office of Health and Human Services, said the argument for quarterly authorizations is to “ensure that the resources go to those who need them most.”

McConnell questioned how often people’s service needs change.

“You are doing more frequent checks to make sure people actually need those services,” Lawrence replied.

Two experts have testified before a special legislative commission that Rhode Island is the only state with quarterly funding of adult developmental disability services, a feature which providers have said repeatedly makes it difficult for them to plan ahead or prepare for the kinds of long-term changes the consent decree demands.

The commission, led by State Sen. Louis DiPalma, D-Middletown, recommended more than a year ago that the state switch to annual funding of individualized service plans. It is generally accepted among developmental disability professionals that barring unexpected events, like the death of a family member, the needs of individuals with intellectual and developmental challenges remain fairly stable and predictable throughout their lives.

Savage said that fiscal officials at BHDDH are committed to creating a funding model that is “easier and more straightforward” for providers and families to navigate.

Thomas, the DOJ lawyer, told Savage: “We’ve been hearing that quarterly authorizations create an administrative burden on providers. We like hearing that you want to reduce administrative burdens.”

McConnell asked Antosh to report to the Court by the end of June what the state has done to ease administrative burdens on providers.

Antosh indicated his report will also include a rundown on the changes the state must undertake to satisfy the consent decree by 2024.

Based on his comments in the hearing, he is likely to include recommendations for increased reimbursement rates to providers and provisions for universal access to internet technology for those receiving developmental disability services.

During the hearing, Antosh asked Savage in the short term to eliminate the scale of rates it pays for various daytime direct support work and instead pay the highest one – assigned to community-based activities - for all front-line staff work.

Savage reminded Antosh of the state’s budget deficit, which has been estimated at $234 million in the fiscal year ending June 30 and a whopping $800 million if the next budget cycle is included in the total. He said his division would start on a case-by-case basis by focusing on funding the needs of each individual authorized to receive supports.

Antosh said a lack of access to internet technology has emerged as a big failing during the pandemic. Group home residents need access to wireless networks, as well as to tablets and other hardware that could help them feel less isolated and in the long run could assist providers with remote wellness checks and the like.

A relative handful of people receiving BHDDH-funded supported employment services have been able to work from home, Antosh said, but more would like to try, according to survey results passed on to him.

Technology must be part of the long-term future for the developmental disabilities service system, he said.

The pandemic has curtailed most daytime services and providers’ ability to bill for them in the current fee-for-service reimbursement system. Most of the daytime activities that have occurred have involved outdoor exercise, Antosh said.

At the same time, providers have had to bear the burden of costly cleaning protocols and other unexpected expenses in group homes that are not automatically reimbursed by the state.

As of Tuesday, May 19, the coronavirus affected 47 congregate care sites, according to the BHDDH spokesman. A total of 115 people in congregate care have tested positive, including 5 who were reported hospitalized on Tuesday. An additional 98 people have been exposed to the virus because of where they live but were asymptomatic. And 7 more persons have died from COVID-19, the spokesman said.

Antosh, meanwhile, said the coronavirus crisis has highlighted the fragility of families as well as providers as they have scrambled to support loved ones with developmental disabilities.

Families often have had no support in caring for adult children or siblings who may need attention of one kind or another all their waking hours – and during the night as well.

Antosh said those who direct their own program of services have had difficulty finding staff to relieve them during the crisis. About 700 persons or families direct their own programs, and BHDDH relaxed its rules on hiring staff to allow any capable adult – including parents and legal guardians who might otherwise be out of work.

Savage said a long-standing prohibition against paying legal guardians to support adults who receive BHDDH funding will not be re-instated after the state of emergency is over.

Antosh said 80 percent of family members answering a questionnaire distributed by a coalition of community organizations reported a high level of anxiety.

Seventy percent said they were concerned about what might happen if their loved one needed to be hospitalized or if they themselves became ill and could not continue as caregivers.

(The state Department of Health recently advised hospitals to make exceptions to their no-visitation policy during the pandemic for those who needed assistance in communications and the support of a familiar caregiver to understand medical procedures.)

Outside BHDDH and the Rhode Island Department of Education, which is responsible for transition services for high school students with developmental disabilities, state officials have been “slow to realize how vulnerable this population is,” Antosh said.

But once they understood, officials in other state agencies have become very sensitive to the needs of those with intellectual and developmental disabilities.

He cited the hazard pay awarded to group home workers, a large order of personal protective equipment (PPE) delivered to providers two weeks ago, and another large order for family caregivers that arrived last week, and an increased focus on testing individuals and staff over the last several weeks.

Antosh said “all parties” have joined in discussions about “what re-opening looks like.”

File photos by Anne Peters