McKee: RI DD Services Need $510.6 Million

By Gina Macris

RI Governor’s FY 25 Budget Proposal-

In a budget plan largely driven by the federal court, Rhode Island Governor Dan McKee has proposed $510.6 million in overall developmental disabilities spending for the fiscal year beginning July 1, about $41.5 million more than the General Assembly enacted for the current fiscal year.

Roughly 55 percent, about $283.4 million, of the proposed developmental disabilities budget would be reimbursed by the the federal-state Medicaid program.

At the same time, McKee seeks to close a projected deficit of $28.3 million in the current budget of $469.1 million as the state tries to integrate adults with developmental disabilities into their communities to comply with a 2014 consent decree with the Department of Justice (DOJ).

Much of the shortfall reflects upward cost adjustments made by the Caseload Estimating Conference (CEC), a budget-planning panel which meets twice a year, advising the governor in November and the General Assembly in May.

McKee also would add $2.9 million to the current budget, and $1.1 million in the next one, for “conflict-free case management,” not only to adhere to Medicaid regulations but to comply with the consent decree. Almost all that funding would come from the federal government.

State social workers from the Division of Disabilities will be assigned to check in monthly with those receiving services and their families to determine if their needs are being met, according to a BHDDH spokesman.

It is not clear whether – or how - this arrangement meets the expectations of an independent court monitor overseeing the consent decree changes. The monitor, A. Anthony Antosh, hasn’t issued a report since last August. Antosh has called for “independent facilitators” to help each individual develop a purposeful program of services and to keep track of how the plan works out.

Developmental disabilities programs account for more than $7 out of every $10 spent at the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), which would get a total of $706.3 million in McKee’s proposal. McKee’s proposed budget for all state spending in the new fiscal year is nearly $13.7 billion.

The latest proposal represents nearly a third more funding for developmental disabilities than the $339.3 million the General Assembly approved just three years ago, in the spring of 2021.

Much of the investment, in recent years, has been used to hike wages for caregivers and their supervisors, for education and training, and for the development of innovative approaches to supporting adults with developmental disabilities.

In three steps since July, 2021, the state has raised the pay for direct care workers by about 49 percent, from $13.18 an hour to a minimum of $20 an hour, in keeping with orders from Chief Judge John J. McConnell of the U.S. District Court, who has been monitoring the state’s efforts to meet the requirements of the consent decree since 2016.

McConnell found that, apart from the impact of the Covid-19 pandemic, historically depressed wages had led to an exodus of workers that prevented the state from offering employment and other services in the community as promised in a 2014 consent decree.

Beginning last July, the $20 minimum hourly rate for workers has been wrapped into a new reimbursement system for private agencies intended to accurately evaluate the needs of individuals, allow them bigger spending limits to get employment and other supports, and to implement administrative changes promoting integration in the community.

The ultimate impact of higher funding on the lives of adults with developmental disabilities remains to be seen. A decade after the state adopted an “Employment First” policy as part of the consent decree, the governor’s figures say that 24.8 percent of the population protected by the consent decree is working in the community, far short of the target 73 percent.

In November, BHDDH told the CEC that private service providers still don’t have the number of workers they need to offer employment-related services and community-based supports for all who want them. A BHDDH report called the shortage “critical.”

 Still, the state’s eye-opening investment in historically underfunded services during the last few years has begun to show results. While a big staff shortage remains, private agencies are beginning to see improvement in their ability to attract new workers.

The recent pay hikes, along with support from a statewide workforce initiative, helped private providers add 274 direct support staff between January and September of 2023, BHDDH officials reported in November.

McKee’s proposal for Fiscal Year 2025, which begins this July, includes nearly $462.4 million in reimbursements to the three dozen private agencies, or subcontractors, who serve as the backbone of the service system the state relies on to carry out the requirements of the 2014 consent decree.

These reimbursements also cover the cost of one-person programs managed by so-called “self-directed” individuals or families. The number of self-directed programs has grown to more than a quarter of the caseload of about 4,000 persons, in part because of the staff shortage at private agencies. Individuals and families, however, report the same kinds of problems finding qualified caregivers as the agencies, especially when it comes to securing employment-related services.

A separate line in the budget would allocate $15.6 million for other costs related to private services, according to a spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

These expenses include the salaries of state social workers and administrators assigned to clients of the private providers, as well as human resources support, building maintenance, information technology support, and contracts for electronic records and for education and training provided by the Sherlock Center at Rhode Island College, the spokesman said.

The state also maintains its own network of group homes, which McKee would fund with $32.6 million in the next fiscal year.

All together, these budget categories add up to nearly $510.6 million.

No additional wage increases are planned for the fiscal year beginning July 1, except for those who provide in-home services to adults with developmental disabilities and were included in a comprehensive Medicaid rate review conducted by the Office of the Health Insurance Commissioner (OHIC). For the in-home workers, the governor’s budget seeks about $844,000. The final OHIC report, issued last September, said that the developmental disabilities workforce will be part of the next rate review in two years.

Conference Seeks Connections Between Business And Job-Seekers With Disabilities

By Gina Macris

A grass roots professional organization will bring Rhode Island businesses together with job seekers having  disabilities and employment specialists skilled at creating successful matches between the two at a conference in Warwick Sept. 28, just ahead of National Disability Employment Awareness Month in October.

“Creating Connections,” at the Radisson Airport Hotel on Post Road, will include a presentation by Feast and Fettle, the company which delivers freshly-prepared gourmet meals in Rhode Island and parts of Massachusetts, Connecticut, New Hampshire and Maine. Feast and Fettle was ranked one of Rhode island’s top workplaces by the Rhode Island Department of Labor and Training in 2022.

Amy Gonzalez

Amy Gonzalez, a former senior policy advisor at the U.S. Department of Labor, will give the keynote address. She has extensive experience at the state and national levels in improving employment outcomes for people with disabilities and is currently project manager for the federally-funded National Disability Employment Training and Technical Assistance Center.

Creating Connections is sponsored by the Rhode Island chapter of the Association of People Supporting Employment First (RIAPSE), an organization best known for promoting training and education among professionals helping adults with disabilities find meaningful work in the community.

But the organizers of the conference say they want to broaden their approach to show the benefits of an inclusive workplace, both to employers and job-seekers.

The conference will explore “how it is we can we address workforce development and economic development” in a common-sense way that meets the needs of employers while reducing turnover costs and promoting employee satisfaction, said Kiernan O’Donnell, who serves as Co-President of RI APSE with Kim Einloth.

Businesses that hire people with disabilities work with professionals like O’Donnell, who analyzes an employer’s particular needs and finds suitable candidates to clear bottlenecks in operations, with continuing support to both the employer and employee.

O’Donnell’s day job is Director of Day and Employment Services for the Fogarty Center, a private agency serving adults with developmental disabilities.

Einloth emphasized the broad, inclusive approach of the conference, saying it will feature a session on “wellness in the workplace.”

“Wellness in the workplace is a universal idea,” she said, adding that the organizers hope everyone can walk away from the conference with relevant information or ideas.

Einloth is Director of Human Services for the Town of New Shoreham and former Chief Operations Officer for Perspectives, a private agency serving adults with developmental disabilities.

In addition to wellness in the workplace, the conference will offer two other breakout sessions: one on navigating the effects that earnings could have on benefits for those with disabilities, and another on finding life satisfaction through work.

A closing panel discussion will include:

• Feast and Fettle’s Director of People Operations, Chris Smith, along with Jordan Andrews, a company employee

• State Rep. Tina Spears, D-Charlestown, South Kingstown, New Shoreham and Westerly, who is also executive director of the Community Provider Network of RI, a trade association of organizations serving adults with developmental disabilities

• Nina Pande, executive director of Skills for Rhode Island’s Future, a non-profit organization that aims to connect unemployed and underemployed Rhode Islanders with socially responsible, civic-minded employers, according to its website.

The moderator of the panel will be Jeannine Pavlak, executive director of neba (lower case), a non-profit organization in Massachusetts and Connecticut which helps people living with disabilities and other barriers to find fulfilling employment.

The conference will run from 12:30 to 4:30 and will be followed by an informal erehour-long networking opportunity. Registration has been extended to Monday, Sept. 25.

Conference fees are $35 for RI APSE members and $45 for non-APSE members, but O’Donnell encouraged those on tight budgets to apply for a scholarship at the end of the online registration process.

To register, click on the link: https://survey.alchemer.com/s3/7461935/RIAPSE

RI BHDDH Seeks $20 Starting Wage For DD Workers

By Gina Macris

The state agency overseeing Rhode Island’s services for adults with developmental disabilities is asking for a $20 minimum hourly wage for direct care workers, effective July 1.

The hike was ordered by a federal judge in 2021 to go into effect by 2024, causing consternation in the General Assembly at the time. More recently, outside consultants concurred with the minimum $20 rate.

The request is part of an overall $430.1 million budget proposal for developmental disabilities that the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has submitted to Governor Dan McKee.

McKee is to submit his spending and revenue plan for the state to the General Assembly on Jan. 19.

RI BHDDH

The BHDDH request for developmental disabilities would add $9.3 million to the current budget of $383.4 million to close a budget deficit in the current fiscal year, ending June 30. About $6 million of the shortfall comes from a state-operated network of group homes.

An additional $37.4 million would be needed to reach total funding of $430.1 million for developmental disabilities in the next fiscal year, beginning July 1.

Spending on developmental disabilities makes up nearly two thirds of the entire BHDDH budget, which is currently $597.1 million. For the next fiscal year, BHDDH is seeking nearly $621.4 million, an increase of of about $24.3 million.

Slightly less than half of BHDDH’s operating revenue comes from state tax dollars, with the rest funded by federal Medicaid money. The overall figures also include some other miscellaneous funding sources.

In a cover letter to the governor in November, BHDDH director Richard Charest said the “Division of Developmental Disabilities continues its commitment in complying with the terms of the 2014 federal consent decree and providing integrated employment and day services.”

A series of substantial wage increases is intended to help stem a worker shortage that prevents eligible adults from gaining access to services to which they are entitled, particularly during the the recovery from the COVID-19 lockdown.

Under pressure from the U.S. District Court, which oversees the consent decree, the General Assembly increased hourly wages from $13.18 to $15.75 in 2021, and then to the current $18.00, which became effective July 1, 2022.

Chief Judge John J. McConnell, Jr. ordered state to hit $20 an hour by 2024. And the outside rate reviewers included the $20 minimum wage in preliminary recommendations made public last September. They also recommend a minimum rate of $22.14 in the fiscal year that would begin July 1, 2024.

As much as the state has been criticized by providers, advocates, and consumers and their families during the last decade for underfunding developmental disabilities, adding more money will not solve all the compliance problems the state has with the consent decree.

 Since 2014, the Department of Justice and the federal court system have sought to oversee a cultural shift in the delivery of services which will enable adults with intellectual and developmental disabilities to live regular lives in their communities, exercising choice about where they work and spend leisure time.

In a hearing in U.S. District Court in December, a lawyer for the Department of Justice said the state appeared unlikely to meet a deadline in mid-2024 for full compliance with the consent decree. Amy Romero of the U.S. Attorney’s office in Rhode Island expressed concern about a lack of individualization or “person-centered-ness,” and inadequate accessibility to services in a number of categories, including supports for teenagers making the transition to adulthood.

Romero’s criticism, as well as that of an independent court monitor, stemmed only partly from a chronic shortage of underpaid direct care workers who make up the front line of consent decree compliance.

How the state spends the money, including the degree to which services are individualized, is entwined in the rate review by outside consultants that has been underway for nearly a year. The rate review - itself court-ordered – has not yet been finalized. It covers not only the reimbursement rates to private service providers but the state administrative structures governing the spending.

Preliminary recommendations from the consultants indicated the state wants to continue the existing fee-for-service system, now 11 years old, with many of the same administrative features, including billing for daytime services in 15-minute units and a relatively limited number of individual funding options.

One big change is a proposal to make job-related supports available to all adults with developmental disabilities as an add-on to basic individual budgets.

Officials are working to finish the rate review by the end of January, according to a newsletter of the Division of Developmental Disabilities (DDD) issued Jan. 13.

In the same newsletter, DDD announced that it will advertise eight new positions to help the state fully comply with the consent decree by mid-2024.

The expanded staff will “assist the Division in developing improved communication with the I/DD community and stakeholders, increasing our training capabilities, and enhancing our support for community access and the self-direction population.” (The self-directed population includes individuals and families who design their own programs – roughly a quarter of the caseload of about 4,000 individuals eligible for services.)

The newsletter offered no additional details about the new positions, nor were any immediately available from BHDDH.

The privately-run developmental disabilities system, which includes the self-directed group and private agencies running group homes and offering daytime services, is currently funded for $352.9 million, with about $173.4 million coming from federal Medicaid reimbursements. BHDDH wants $40.7 million more for the private system from both federal and state Medicaid funds, including about $2.9 million to cover a shortfall in the fiscal year ending June 30.

A parallel network of state-run group homes, currently funded for nearly $30.6 million, would need an increase of about $6 million to balance its budget for the current fiscal year, according to the BHDDH budget request. Funding for fiscal 2024, beginning July 1, would continue at the higher level, about $36.5 million.

The administration of former governor Gina Raimondo had tried to privatize the state group homes, but private operators made it clear they were in no financial position to take on the responsibility for additional residents. The plan also faced opposition from unionized state employees who staff the state system, called Rhode Island Community Living and Support (RICLAS). Governor McKee has made it clear he will continue to support RICLAS.

Judge Tightens Reins On RI DD Consent Decree Compliance

By Gina Macris

It’s been eight years and eight months since Rhode Island signed an agreement with the U.S. Department of Justice to improve the lives of adults with developmental disabilities by ending their segregation in sheltered workshops and day care centers.

But with 16 months remaining for the state to fully comply with the consent decree, the state’s progress falls far short of the goals, according to the report of an independent court monitor made public Dec. 6.

On that day, U.S. District Court Chief Judge John J. McConnell, Jr. incorporated the monitor’s wide-ranging recommendations into an order outlining some 50 tasks to be completed before June 30, 2024, when the 2014 consent decree expires.

McConnell also scheduled a public hearing on the status of the consent decree for Monday, Dec. 12, at 2 p.m.

Parts of the order will require additional changes to a preliminary review of rates for developmental disability services that was made public in September.

The recommendations of the monitor, A. Anthony Antosh, provide a snapshot of the current system:

1. Forty-four percent of those who once toiled in sheltered workshops, and 33 percent of those who spent daytime hours in centers, have found jobs in the community since the consent decree was signed, far below expected levels.

2. About one third of adults – and more than half of young people moving from high school to adult services – do not participate in community activities. The consent decree promised a 40-hour week filled with work and activities that are purposeful to each of some 4000 persons eligible for services.

 Antosh recommended a way for the state to meet its targets: bring system-wide funding to existing pilot programs that have shown success in employment and integrated community activities – the fruits of some $12 million in “Transformation Grants” made during the past year.

Judge McConnell has given the state until next July to put that funding in place – and to figure out how to fit it into the rate review or find some other way to do it.

The monitor said that “individuals and families report uncertainty and lack of information” about the consent decree, the Employment First policy emphasizing competitive employment for those with disabilities, and community activities.

Families of young people moving from high school to adult services say they generally are “overwhelmed by the process and report not having sufficient information or support,” Antosh said.

The court ordered the state to put a streamlined application for adult services in place and to give every family a consistent point of contact to serve as a guide during the transition. These are two more of the 50 tasks the state must complete in 2023 or 2024 to comply with the consent decree.

Antosh put the state on notice that his final evaluation of the state’s compliance with the consent decree in will include an assessment of its impact on people’s lives. Positive impact will be measured by at least two thirds of a random sample of individuals reporting a “community-based life, achievement of personal goals, and satisfaction” during independent interviews, he said.

In the last few years, Judge McConnell has recognized that a key problem in the implementation of the consent decree has been a lack of front-line staff, who, until mid-2021, were paid an average of $13.18 an hour, too little to attract an adequate workforce.

The General Assembly increased wages from $15.75 to $18 an hour in July, and McConnell has ordered that rate to increase to $20 an hour by 2024.

In recent months, the state has stepped up its recruitment efforts, with 146 new hires reported in September by a recruitment consultant, Antosh said.

McConnell ordered those recruitment efforts to continue, with emphasis on helping individuals and families who direct their own services. The state’s figures indicate this group now makes up about a quarter of all those receiving developmental disability services.

Among other things, the state must explore the possibility of a mechanism to provide health benefits to for those who work on an hourly basis for individual families by July, 2023.

McConnell’s court order also signals that neither he nor Antosh are in agreement with some features of a recent rate review that would update the fee-for-service reimbursement system the state uses to pay private service providers who deliver the actual day-to-day supports to adults with developmental disabilities.

A spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) said Dec. 1 that “changes have been made to the recommendations” since they were presented to the public in September on the basis of “public comments, including the Court Monitor’s and those from other stakeholders.”

“These final recommendations are now under review and will be made public after review,” the spokesman said.

The rate review recommendations as they now appear on the health policy webpage of the outside consultant, the Burns & Associates Division of Health Management Associates, (here) cover everything from assessment of need to the allocation of individual budgets and billing requirements, in addition to revisions to dozens of rates that would be used to continue a fee-for-service system called Project Sustainability, introduced in 2011.

The Burns & Associates recommendations would continue requiring service providers to bill in 15-minute units from an extensive menu of rates for services provided during the day, despite recommendations from a study group and the monitor that the detailed –and costly - paperwork should be eliminated.

Now, as part of McConnell’s action Dec. 6, the state has been ordered, in bold type for emphasis, to “simplify the billing process” through the rate review by July, 2023.

McConnell’s order also elevates several other recommendations Antosh has made touching on the rate review, directly or indirectly.

For example, the state has made it clear that it plans to continue using a standardized interview called the Supports Intensity Scale (SIS) to determine individual support needs, with the addition of supplemental questions to capture particular behavioral or medical issues.

Antosh noted that while the state may continue to use the SIS, the court has previously directed it to explore alternate assessment methods. “Now might be the time,” he wrote.

He also said there should be a funding mechanism that allows individuals and families to “identify unique needs and costs” that go beyond the results of any standardized interview and supplemental questions. Nor should Individuals have to file appeals to get the additional funding (as is now the case), he said.

Antosh discussed “person-centeredness,” how the bureaucracy should enable individuals, with the support of families and advocates, to become empowered to take charge of their own lives, setting short-term and long-term goals and realizing them through day-to-day supports.

A key to this empowerment is first making a service plan based on individual needs and then matching funding to that plan, with an independent case manager or facilitator guiding the process, Antosh said.

Currently, individual service plans are designed to fit into a funding formula that has about 20 options, based on an assessment of need. BHDDH, which determines both individual need and funding, has not indicated it wants to change the current approach, except to fund employment supports as an add-on to the basic budget.

On a statewide level, the Executive Office of Human Services has devised a draft plan for independent, or “conflict-free” case management for all Rhode Islanders receiving Home and Community Based Services (HCBS) funded by the federal-state Medicaid program, including adults with developmental disabilities.

The draft plan proposes a flat rate for all HCBS case management that is yet to be disclosed. It is not clear that the plan fits the monitor’s vision of conflict-free case management, but it will have to meet the requirements of the court and the consent decree as it applies to adults with developmental disabilities.

Public Access to Hearing, EOHHS Meetings

The remote-access public hearing on the consent decree begins at 2 p.m. Dec 12 before Judge McConnell. The meeting will be hosted on zoom.gov The Meeting ID is 160 1690998, and the Password is 488765. This information is also on the court’s public access page, here, along for instructions on dialing in to the audio only. Please note that due to an apparent typographical error, the date of the hearing on the public access page is incorrect.

Maenwhile, at 3 p.m. Monday, EOHHS will host the first of three public comment meetings on the draft plan for conflict-free case management. Advance registration is required for that session and two other meetings, Dec. 14, and 15, both also at 3 p.m. Registration links and other information about conflict-free case management can be found here

Read the Dec. 6 court order here.

Read the EOHHS draft plan on conflict-free case management here.

RI DD Issues On Public Agenda Next Week

The Chief Judge of the U.S. District Court in Rhode Island will hold a remote-access public hearing Monday, Dec. 12 on the status of a 2014 consent decree addressing the rights of adults with developmental disabilities to work and enjoy various other activities in their communities.

Separately on Monday, and on Wednesday, Dec. 14, and Thursday, Dec. 15, the state Executive Office of Health and Human Services (EOHHS) will host three remote-access public sessions to gather feedback on a draft plan to comply with a rule of the federal Centers for Medicare and Medicaid Services established in 2014. That rule on “conflict-free case management” requires assessments of need and coordination of healthcare and social services to be separate from the actual delivery of those services.

The hearing on the consent decree, now in its ninth year of federal oversight, will begin at 2 p.m. Monday before Chief Judge John J. McConnell, Jr. Instructions for remote viewing or dialing in for audio are on the court’s public access page, which can be found here.

Scroll down the page to see the listing for USA vs. State of RI alongside Judge McConnell’s name, which includes the meeting ID and password.

The first of the three EOHHS public meetings on the state’s draft plan for so-called Conflict-Free Case Management will begin at 3 p.m. Dec. 12. There will be two other sessions, both at 3 p.m., on Wednesday, December 14, and Thursday, December 15.

Any proposed change in the system for coordinating federally-funded Home and Community-Based Services (HCBS) will affect adults with developmental disabilities, as well as many others eligible for Medicaid-funded HCBS programs.

The way the state addresses conflict-free case management also will play a part in the state’s ultimate compliance with the consent decree. Both are drawn from the Olmstead decision of the U.S. Supreme Court, which held that the Integration Mandate of the Americans With Disabilities Act is intended to give people with disabilities the resources necessary for them to live regular lives in their communities.

Those interested in attending any of the EOHHS sessions must register in advance. The links for registration, as well as an explanation of the reasons for the plan and a copy of the draft document, are on the EOHHS Conflict-Free Case Management webpage here.

$2.5 M Unused For Lack of RI DD Jobs Program

CVS Trainee - File Photo

By Gina Macris

This article was updated Sept. 10.

A total of $2.5 million dedicated to helping adults with developmental disabilities find new jobs remains unused because the Department of Behavioral Healthcare, Developmental Disabilities, and Hospitals (BHDDH) hasn’t yet decided on a program for spending the money..

 A department spokesman has clarified an earlier statement about the amount of money lacking a spending program.

In addition, the Division of Developmental Disabilities (DDD) is still seeking a replacement for the chief employment administrator, who left May 1.

The lack of readily available BHDDH funding dedicated to expanding the number of job placements was disclosed by the Director of Developmental Disabilities at a virtual public forum in August.

The situation represents one factor threatening the promise of a 2014 federal court consent decree to change the lives of people who once spent their days in sheltered workshops or day centers cut off from the rest of the community.

A parallel issue at the top of the list of concerns of an independent monitor is a shortage of skilled workers who assist people with disabilities to find meaningful jobs and expand their activities in the wider community.

The workforce shortage has taken on heightened urgency since the monitor recommended last week that the U.S. District Court accelerate recruitment of workers and possibly impose multi-million dollar fines against the state for noncompliance of the consent decree. (See related article.)

Until a new DDD employment program is adopted, adults with developmental disabilities must either seek state-sponsored employment services funded outside BHDDH or reduce other types of BHDDH service hours to pay for help finding a job.

Limitations on employment supports built into the current developmental disabilities system are part of a comprehensive review now underway of reimbursement rates for private service providers and administrative barriers to integrated services,

The 2014 consent decree anticipated that by 2022 – eight years later – Rhode Island would be scaling up pilot programs of supported employment that would reach some 4,000 people.

But BHDDH has never scaled up. Its first pilot program emphasizing individualized employment supports began in 2016 and underwent several iterations until the final version, the “Person-Centered Employment Performance Program 3.0” ended June 30.

The DDD director announced in February that the program would not be renewed but did not explain the reasons.

At the same time, the director, Kevin Savage, hinted at frustration on the part of the chef administrator for employment services, Tracey Cunningham, saying that she would be “leading the charge” in designing a new supported employment program “if Tracey stays with us, and puts up with us longer.”

But Cunningham, Associate Director for Employment Services since 2016, announced her departure in early April. BHDDH has posted the position twice but has not yet found a replacement for Cunningham.

The BHDDH spokesman could not say why a new supported employment program has not yet been put in place but said the “the DD team is meeting with stakeholders to determine a spending and engagement plan.”

Job Placements Fall Short

In an August 29 report to Chief Judge John J. McConnell, Jr., the independent monitor, A. Anthony Antosh, documented the state’s limited capacity to serve adults with developmental disabilities.

For example, 23 of 31 agencies serving people with developmental disabilities said in a survey they had to turn away clients or stop taking referrals between July and December of 2021 because they did not have the staff to provide services,

By July, 2022, the state had found jobs for only 67 percent of the consumers that it had promised in the consent decree – 981 of 1,457. (The new-job totals span the entire term of the consent decree, whether or not a particular individual is currently working.)

Antosh said that job placement numbers have remained flat throughout 2021 and 2022, increasing by only 17 in a 12-month period.

In general, he described the developmental disabilities system as being in the “messy middle,” borrowing a phrase from Michael Smull, a developmental disabilities expert on system change.

Antosh said elements of the system desired in the future have been defined, and some individuals are beginning to see progress. But he said most still face the restrictions of the current system, “which needs to be funded and maintained while the future is being built.”

Funding will depend on the results of the ongoing program review that is now underway and how the recommendations will be received by the governor and the General Assembly.

Rate Review To Finish Nov. 1

Under court order, BHDDH moved forward with the comprehensive review, hiring Health Management Associates, the parent company of Burns and Associates, earlier this year. Burns and Associates helped the state a decade ago to implement the current system, which the DOJ found violated the Integration Mandate of the Americans With Disabilities Act. (Burns & Associates says the state did not implement its recommendations for that program.)

The DD director, Kevin Savage, said the review will be completed Nov. 1, a month earlier than expected. He told a public forum in August that he plans to schedule another public meeting shortly after the review is completed to gather feedback from the community before the BHDDH budget goes to the Governor, who must present a proposal to the General Assembly in January.

The review is expected to address not only funding issues but controversial administrative features that the monitor says are barriers to a community-based network of services, starting with the eligibility process.

For a decade, BHDDH has used the standardized Supports Intensity Scale (SIS), a lengthy interview process, to determine the intensity of a person’s disability and assign one of five funding levels for services.

Antosh has pushed back against the state’s stated intention to continue using the SIS, saying it needs yet comprehensive review. Despite the re-training of interviewers in 2016, families still report the SIS does not result in the funding necessary for needed services. And they have complained for years that they sometimes felt humiliated and emotionally drained by the SIS interviews.

The state has developed a supplemental questionnaire intended to improve the accuracy of the SIS, but Antosh said very few families report that they have seen it or understand its purpose.

The families of young people applying for adult services for the first time “continue to report being overwhelmed” by the process, which the state has promised to streamline. And families also generally don’t understand how to appeal a funding decision they believe is inadequate for the services their loved one needs, Antosh said. He recommended that intensive training of social caseworkers continue about communicating new policies to families.

Administrative Barriers To Integration

Antosh’s report also outlined the concerns of service providers about some features of the reimbursement rules, including:

• A requirement that they document the time each daytime worker spends with each client in 15-minute increments, a time-consuming and costly process.

• Another rule that dictates staffing ratios for different kinds of activities, which sometimes results in results in group activities in the community instead of individualized experiences.

Antosh reiterated recommendations of a workgroup on administrative barriers that said:

• The ratios should be replaced with reimbursement rates which allow workers to have 1,2, or 3 clients in their care

• Documentation of worker time should be done in three or four-hour units

Antosh said he expects the reviewers will reach conclusions that are similar to the workgroup. He made numerous other detailed recommendations in the 50-page report.

With the consent decree set to expire in 22 months, on June 30, 2024, Antosh said that all of his recommendations must be “fully implemented with urgency,” using boldface for emphasis.

All the state’s reforms eventually must be approved by the Court.

Read the monitor’s August 29 report here.

Read the monitor’s Sept. 1 addendum here.

Judge Steps Up Pressure On RI DD Hiring

By Gina Macris

John J. McConnell, Jr.

With the state of Rhode Island six months behind in its promise to recruit and hire  critically-needed caregivers for adults with developmental disabilities, a federal judge has stepped in to jump start expansion of the work force. 

On May 3, Chief Judge John J. McConnell Jr. of the U.S. District Court ordered the state to prepare a recruitment strategy by Aug. 1. He also ordered specific steps the state must take to boost hiring.  

McConnell said that by Aug. 1, the state must bring on a sufficient number of recruiters, who, in turn, can attract 60 job candidates that will result in 35 new hires each month between August and next May.  

“The workforce shortage continues to be a primary barrier to substantial compliance,” McConnell said in the order. 

McConnell’s order included two other steps:

• Beginning in June, the state will be required to report every two weeks to the court’s independent monitor showing its progress in four areas in establishing and training an adequate workforce.

• By June 30, the state must conduct focus groups with provider organizations, families and individuals who run their own service programs, as well as other relevant organizations, to gather the information necessary to develop a statewide recruitment strategy.. 

McConnell’s order is his latest in a long-running effort, initiated by the U.S. Department of Justice, to get the state to comply with a consent degree in which it agreed to reinvent a developmental disabilities system organized around day care centers and sheltered workshops into one providing broad job and social opportunities for men and women. 

The workforce recruitment initiative is but one part of a comprehensive “Action Plan” the state proposed to McConnell last October to avoid a hearing on contempt charges and possible hefty fines. But now, the state is far behind in its promised hiring effort. 

The state was to have hired a consultant by last Nov. 15 to coordinate a statewide initiative to expand the number of direct care workers. 

But the state is still working on the wording of a bid proposal for the consultant’s contract, with the bid next having to go through the state purchasing system, according to a spokesman for the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH). 

Since late February, individual provider agencies have had access to money from the first phase of a $12 million Transformation Fund designed to help them and individuals and families directing their own programs to strengthen community services. Individuals and families who direct their own programs will also have access to the fund.

There was a $15 million Transformation Fund in Governor McKee’s original budget proposal for the current fiscal year, but it was never enacted.

The idea of a Tranformation Fund re-appeared in the Action Plan adopted by McConnell in October, but the providers had to wait five months to access their portions of money because funding - $12 million from the federal American Rescue Plan Act (ARPA) - was not allocated by the General Assembly until Jan. 4. Then the actual funding had to wend its way through the state bureaucracy before it was released to the providers.

Now many of the providers are launching individual workforce recruitment initiatives as the first step in transforming services, but they have been unable to leverage any statewide coordination.  

One section of the consent decree requires the state to maintain an adequate workforce.  

But McConnell noted that earlier consultants ’ reports to the court “documented more than 1,000 direct support vacancies.” The consultants said the state had nearly 1,800 of some 2850 front-line workers needed to staff community-based, individualized activities.  

And the state has only a little more than two years to turn the situation around before the full compliance deadline of the consent decree on June 30, 2024.  

McConnell’s May 3 order speeding up the workforce initiative includes reports by the state to the court monitor in these areas:

• recruitment and retention

• training and professional development

  establishing work standards and a credentialling path for workers

• the involvement of institutions of higher learning in growing a trained workforce. 

The focus groups McConnell also ordered are to develop a recruitment strategy addressing these areas:

• The compliance needs of the state

• Possible career pathways for workers and possible pipelines for new talent

• “New concepts” for providing services

• Factors associated with job turnover and factors associated with retention

• Staff roles and responsibilities. 

Depressed wages for front-line caregivers are the primary cause of high turnover and vacancy rates. These two factors have led to a lack of sufficient services for vulnerable people who are entitled to them by law.  

In January, 2021, McConnell ordered the state to raise starting wages, then about $13.18 an hour, to $20 an hour by 2024.

Governor Dan McKee’s initial budget proposal for the current fiscal year, released in  March, 2021, contained no wage increase. But as a result of court-ordered negotiations between the state and private service providers, base pay jumped from $13.18 to $15.75 last July 1.  

This year, McKee has proposed raising direct care wages to $18.00 an hour, but recent inflationary pressures on the job market has prompted Sen. Louis DiPalma, D-Middletown, and Rep. Evan Shanley, D-Warwick, to propose companion bills that would hike that  hourly rate to $21 on July 1.

While the workforce shortage has been exacerbated by the COVID-19 pandemic, it has been building for more than a decade, ever since the General Assembly enacted the fee-for-service reimbursement system known as “Project Sustainability” in 2011 in conjunction with rate cuts of about 18 percent overall to private service providers.

Project Sustainability resulted in layoffs, double-digit pay cuts, and a growing exodus of workers. Jobs which once paid a living wage and had opportunities for advancement were turned into subsistence work.  

In 2014, the federal Department of Justice  found that Project Sustainability’s over-reliance on sheltered workshops and day care centers violated the rights of individuals to choose individualized services in their communities. Sheltered workshops were eliminated in 2018. 

Even after the state agreed to correct these civil rights violations, it did not follow through with the necessary funding.

From 2011 through 2018, funding for developmental disabilities never caught up with the cost-of-living, according to an analysis prepared by the Senate Fiscal Office for Sen. DiPalma in 2018 He is first vice-chairman of the Senate Finance Committee.  

McConnell took the bench in January, 2016 to oversee the case at the request of the DOJ and an independent court monitor, who in 2015 had found implementation lagging after an initial flush of success with former sheltered workshop employees who quickly found competitive employment.  

Beginning in 2016, the main fiscal strategy of the state was a multi-year effort to shift funding to daytime services from residential care by moving people from costly group homes to less-costly shared living arrangements in private homes.   

While shared living has grown slowly, it has not resulted in the significant savings that state officials originally envisioned.   

In response to pressure from the court in 2016, the Division of Developmental Disabilities hired professional staff to work on supported employment and community inclusion initiatives, but core requirements of Project Sustainability remain in place.  

They include staffing requirements geared to center-based care that are impractical in the community.  

In August, 2021, with the state falling farther behind in the number of job placements required by the consent decree, the DOJ asked McConnell to find the state in contempt of court and levy hefty fines.  

The state responded with the Action Plan, which McConnell turned into a court order.  

A key portion of the Action Plan is a rate review that is being conducted by Health Management Associates, a healthcare consultant which bought the firm responsible for creating Project Sustainability in 2011 There hasn’t been a rate review since then.  

In 2018, the lead consultant on Project Sustainability testified publicly that a rate review of developmental disability services was already overdue.  

Mark Podrazik, a co-founder of the former Burns & Associates, told a legislative commission that his firm recommends rate reviews every five years at a minimum. (Proposed legislation separate from the ongoing rate review would require Rhode Island to update reimbursement rates to developmental disability service providers every two years.)  

Podrazik, who now works for Health Management Associates on hospital projects, also said that the state undercut Burns & Associates rate recommendations in creating Project Sustainability in 2011. 

The current rate review is to be completed by Dec. 1, 2022, giving the state just 18 months to enact changes and get the federal government to sign off on its oversight role before the 2024 compliance deadline.  

To read Judge McConnell’s order, click here.

Bills Would Set Competitive Rates For All RI Human Service Workers

L TO R, Rep. Julie Casimiro, Sen. Louis DiPalma, Christina Battista. Audience Applauds Battista While DiPalma Hands Battista’s Notes to Battista’s Personal Care Assistant, Center.

By Gina Macris

Christina Battista, a supported employment coordinator for Skills For Rhode Island’s Future, says she never would have been able to earn a master’s degree or hold a job if it weren’t for a personal care assistant.

“Someone is literally my hands,” says Battista, who has a physical disability. Her personal care assistant helps her shower, cook, do laundry, take her shopping, help her meet up with friends, “and so much more.”

“Being able to live, rather than just exist, means more to me than I can express in words,” she said.

Likewise, Patricia Sylvia says she wouldn’t have been able to live happily at home for three and a half years after her stroke if it hadn’t been for a certified nursing assistant who helped her with everything from bathing to laundry to cleaning.

But Sylvia’s caregiver died last August. As a result, she’s lost 15 pounds and she feels her health and independence are threatened.

A wide range of medical and human service programs established to serve Sylvia and Battista and hundreds of thousands of others are facing a critical workforce shortage caused, in large degree, by the state’s low reimbursement rates for the pay of direct care workers.

Sylvia and Battista both spoke at a State House press conference March 8 in support of companion legislative bills that would address the critical need for direct care workers through mechanisms designed to set fair market pay rates every two years.

All members of the Senate have signed on as co-sponsors of legislation introduced by Sen. Louis DiPalma, D-Middletown setting up a rate review process that draws community representation into an advisory committee working with the Executive Office of Health and Human Services (EOHHS).

DiPalma said it’s the first time in his 14 years in the Senate that any of his bills has received unanimous support from his colleagues.

“This is about investing in hundreds of thousands of Rhode Islanders to ensure they have the services they need, for which they’re eligible, and for which the state is authorized,” DiPalma said.

Rep. Julie A. Casimiro, D-North Kingstown, has introduced the same legislation in the House; one bill aimed at reimbursements for privately-run human service programs licensed by the state and another for medical and clinical programs.

”Our health care system is suffering a crisis of care that has only gotten worse because of the pandemic,” Casimiro said.

“Severely underpaid” direct care workers in an “understaffed and under-supported” system are crossing the Rhode Island border to find better-paying jobs outside the state, she said.

Maureen Maigret, a decades-long advocate for the human services, said, “Everyone would rather get services at home, and it is also the clear law of the land that services be provided in the least restrictive setting possible.

And yet we have failed to build the kind of system that allows this, largely because we have failed to recognize the value of our direct care workers.”

Patrick Crowley, Secretary-Treasurer of the Rhode Island AFL-CIO, spoke from the workers’ perspective. “When working people are uplifted and they can lift up the community that they service, our entire community here in Rhode Island is better off.”

Crowley added: “If these bills can build the scaffolding we need, I say, let’s do it.”

In each case, the rate-setting process would be conducted every two years by the EOHHS with the advice of a 24-member advisory committee.

Tina Spears, executive director of the Community Provider Network of Rhode Island, said “Everyone deserves a living wage.”

“This solution would evaluate the costs” faced by providers and respond to them, she said.

Because the legislation would not have an immediate impact, Rhode Island must use some of its unspent funds from the American Rescue Plan Act to shore up human service agencies, Spears said.

The legislation gives EOHHS until March 1, 2023 to complete the first rate review recommendations to the governor and the General Assembly.

EOHHS would collect data from the state’s Medicaid administration, the state Department of Health, and agencies responsible for addressing poverty, child welfare, mental and behavioral health, developmental disabilities, and aging.

Then EOHHS would analyze the data in conjunction with separate 24-member advisory committees for medical and human services programs.

“It will cost money two years from now, but this is money we should invest,” DiPalma said, so that the state never again goes back to a situation in which a lack of staff forces infants and toddlers with developmental disabilities to wait for early intervention, as they have in recent months.

At least two other states, Massachusetts and Colorado, have adopted similar rate-setting processes, DiPalma said.

He noted that in Massachusetts, health and human services makes up 56 percent of the state budget, although that doesn’t mean Rhode Island should invest the same proportion in its human services sector.

At the same time, DiPalma said, Rhode Island is accountable for a wide swath of services, including child welfare, services for those with disabilities and the elderly, medical care for the poor, and behavioral health and substance abuse programs, among others.

Without a change in the way the state sets rates, those services will become increasingly unavailable, he said.

In 2014 a lack of integrated community-based services for adults with developmental disabilities resulted in a consent decree with the U.S. Department of Justice that is still dogging the state.

In that case, a review of rates paid to private providers of developmental disability services is underway under court order.

For the full text of the bills, follow these links: S 2311, S 2200, H 7180, H 7489

New Relief Funding Welcome, But Forum Says Caregivers Still Undervalued

By Gina Macris

In the last week, both Rhode Island and Massachusetts have taken steps to slow the exodus of workers from the community-based human service agencies the states depend on for critical mental health and social services.

The problem is that, through the federal-state Medicaid program, states set rates for human services workers in the private sector far below the salaries they pay state employees to do comparable work. The pay for private-sector human services jobs also lags behind he starting wages at major employers such as Amazon and Costco.

The two states are taking a variety of actions to raise pay and make the jobs more competitive, but a panel of human service executives from Connecticut, Massachusetts and Rhode Island says one-time infusions of cash do not address the core issue.

Massachusetts Governor Charles Baker is poised to sign a bill that passed both houses of the Massachusetts legislature last week giving $30 million in coronavirus relief funding to human service agencies to stabilize the workforce and provide college loan relief to workers.

In Rhode Island, the governor and the leadership of the House and Senate agreed Dec. 6 to use nearly $50 million in relief funds to re-open early intervention programs to new referrals and shore up staffing for agencies caring for children removed from their homes, child-care providers, and pediatric primary care medical practices.

The General Assembly also promised to tap $57.4 million in enhanced Medicaid reimbursements to support workers in home and community-based services, as long as the federal government approves that use for the money.

“It’s a step in the right direction,” said Tina Spears, executive director of the Community Provider Network of Rhode Island (CPNRI), of the announcement by Governor Dan McKee, House Speaker Joseph Shekarchi, and Senate President Dominick Ruggerio.

As she spoke, she was helping to lead a tri-state virtual public forum on the plight of nonprofit human service organizations – and how to stabilize them.

The forum described a regional slice of a national problem which threatens the quality of life essential to a thriving economy, the speakers agreed.

Community-based human service organizations, which provide a wide array of services, are the “connective tissue of the economy,” said Rhode Island Rep. Liana Cassar, speaking to more than 200 people in Connecticut, Massachusetts and Rhode Island who were listening or watching the two-hour presentation.

In the long run, one-time fixes, like coronavirus relief funds, will not address a system that has been long undervalued, Cassar said.

The pandemic did not create the problem, all agreed. Instead, it served as an accelerator.

Massachusetts State Senator Cindy Friedman said legislators were “blown away” by the statistics provided by non-profit human service agencies during State House testimony.

Massachusetts benchmarks the wages of employees in community-based human service organizations to a median of $16.79 an hour, said Michael Weekes, CEO of the Providers’ Council, a trade association of more than 220 community agencies that serve all types of people in need.

That median wage lags behind even starting wages at several large employers. Costco starts at $17 an hour and Amazon hires at a minimum of $18 an hour in Massachusetts, Weekes said.

“We just can’t compete,” he said. State employees in the human services make an average of $1,274 a week, but those in the private sector doing similar work get an average of $548 a week – a gap of more than 100 percent, Weekes said.

And whatever Connecticut and Massachusetts are paying for health and human services, Rhode Island is below that, said State Sen. Louis DiPalma. Rhode Islanders seeking better pay live within minutes of the Massachusetts and Connecticut borders, he said.

“We are treading water and taking on water,” said Spears, the director of CPNRI. The low salaries in human services have impacted the quality of life for a disproportionate number of minorities and women. They are essential workers, just like firefighters, police, and teachers, and should be treated that way, she said.

The consequences of the workforce shortage have become dire:

In Rhode Island, all nine early intervention programs for infants and toddlers with developmental delays were closed to new applicants programs at the end of November – a situation that is expected to soon be reversed soon with Governor Dan McKee’s release of $3.6 million in coronavirus relief funds from the CARES Act. That was part of the relief package announced Monday, Dec. 6.

In Connecticut, State Rep. Catherine Abercrombie said she had been hearing that a lack of mental health workers is an underlying issue in the three-day closure of one high school that had received threats of violence. Hamden High School, closed last Friday and again Monday and Tuesday. It reopened Wednesday with heighten security, and school officials planned to beef up mental health services, according to local news reports.

Diane Gould, CEO of Advocates, a large human services provider west of Boston, connected school violence and suicide risks to children’s mental health concerns.

The number of children who have attempted suicide increased “significantly” over the summer, she said. In August, her organization saw four children aged 11 to 17 who had tried to kill themselves.

“As many as 50 percent of the kids we’re seeing have aggression, suicidal thoughts, and anxiety,” she said, and there has been a 46 percent increase in calls to Advocates’ information and referral line since the pandemic struck in 2020, she said.

“There has been a terrible convergence of inadequate staffing with a dramatic increase in need,” she said.

Gould and other providers said they have been forced to create waiting lists for critically needed services or have stopped taking new cases.

In Rhode Island, service cuts for adults with developmental disabilities violate a 2014 civil rights consent decree that was supposed to bring them 40 hours a week of supported employment and individualized activities of their choice in their communities.

To keep staff from quitting, some providers described raises, signing bonuses, and other incentives they have given in the last few months – even though they are overspending their budgets.

“It’s a little nervous-making,” said Chris White, CEO of Road to Responsibility, provider of services to adults with developmental disabilities on the South Shore of Boston. “We’re doing this with one-time funds,” he said. “If there are Massachusetts legislators on this call, I hope you are hearing that. We are eating into our reserves.”

Abercrombie, the Connecticut legislator, said “this is a crisis.” The state still has $300 million in coronavirus relief funds to allocate, “and I’m glad we do,” she said.

The non-profit human service sector is a “vital business,” said Cassar of Rhode Island. “Our families depend on it and our economies depend on it,” she said.

“When people say, ’We need to bring well-paying jobs to Rhode Island,” they should be told, ‘We have jobs in Rhode Island. We need to make them well-paying,’” she said.

State senators DiPalma in Rhode Island and Friedman in Massachusetts have sponsored bills to permanently raise the pay of caregivers in the non-profit sector. Friedman’s bill would link salaries to the amount Massachusetts pays state employees for similar work, with a phase-in period of five years.

DiPalma has introduced a bill for several years that would fix minimum pay at at 55 percent above the state’s minimum wage, although he says he considers it a “work in progress.” DiPalma plans to re-introduce a revised measure in January.

Rhode Island will have a court-ordered review of the rates paid to private providers of developmental disability services, many of whom are members of Spears’ organization, CPNRI. A federal judge has ruled that without such a rate review, Rhode Island’s developmental disability system cannot fund the changes necessary to comply with the 2014 consent decree.

But that review will not affect other segments of the non-profit human services.

DiPalma said, “When we, the legislators, value the profession of the front-line workers, we will address the issue. Anything else will be a band-aid.”

DiPalma, the first vice president of Rhode Island’s Senate Finance Committee, acknowledged that solving the crisis is “categorically in the hands of the legislature.”

He said that every day, citizens should be asking their legislators what they are doing for the public. he said.

Meanwhile, Monday’s announcement by McKee, Shekarchi and Ruggerio signals the release of significant coronavirus relief funding in the short term:

• $38.5 million for children, families and social supports; $32 million to small business; $29 million to housing; and $13 million to tourism and hospitality industries; all from a total of $113 million in what McKee calls his “Rhode Island Rebounds” plan, funded by the American Rescue Plan Act (ARPA).

• $57.4 million from the enhanced federal Medicaid match, which community-based agencies may use to shore up their workforce through hiring bonuses, raising pay and benefits, shift differentials, and other incentives

The three leaders also announced funding to supplement the human services portion of McKee’s “Rhode Island Rebounds” plan:

• $ 6 million for childcare providers, on top of the $13 million in the original plan. Ruggerio, the Senate president, said, “Childcare is a top priority. We can’t get people back to work if they can’t get childcare.”

• $3.64 million from unspent CARES Act funding for early intervention, in addition to the $5.5 million McKee originally put in Rhode Island Rebounds.

The House Finance Committee is expected to vote next week on the funding. The unusual display of unity among the executive and legislative leadership of state government Monday signals swift passage of the funding measures. (McKee does not need legislative approval to release CARES Act funding.)

Rhode Island is the only New England State that has not spent any ARPA funds, and critics have put increasing pressure on the General Assembly in recent weeks to take action on McKee’s proposal, especially after the start of a waiting list for early intervention services last week.

View the entire public forum on YouTube: https://www.youtube.com/watch?v=PLS18en74A8

Tri-State Human Service Coalition To Press For More Funding

Photo By Remi Walle/Unsplash

By Gina Macris

Non-profit agencies in Connecticut, Massachusetts, and Rhode Island will hold a virtual presentation for Monday, Dec. 6, asking legislators to fund solutions to a workforce crisis that has curtailed services to some of the region’s most vulnerable people.

Clients of the agencies include those with mental health and addiction issues, developmental disabilities, victims of domestic violence, and elderly persons trying to stay in their own homes.

The Community Provider Network of Rhode Island, The Providers’ Council of Massachusetts, and the Connecticut Community Nonprofit Alliance, representing a total of more than 500 human service agencies, have scheduled the two-hour presentation from 10 a.m. to noon on Monday. Pre-registration is at https://ctnonprofitalliance-org.zoom.us/webinar/register/WN_JJDc9bY9SXSAMHyuGOJCYA

The forum, open to the public, is aimed at policy makers and state legislators, said Tina Spears, executive director of CPNRI, a trade organization focused on services for adults with developmental disabilities.

“While workforce shortages across industries have been well documented, the shortage in the nonprofit sector has been amplified by historic underfunding,” the organizers say. (The Massachusetts legislature appears to be on the verge of passing a $4 billion human services package.)

In Rhode Island most recently, all nine early intervention providers have stopped taking new cases of families with infants and toddlers needing a variety of therapies to treat developmental delays. The children are entitled to these services by law.

Without an influx of money, early intervention and other types of human services “will continue to shrink,” increasing the odds that providers will shut their doors all together, Spears said in a telephone interview December 3.

In the areas of early intervention and children’s services, Rhode Island Governor Dan McKee proposed a budget amendment in October that would include $5.5 million for early intervention and $12.5 million for direct care staff of service providers for children in state care, with some of them languishing in hospital psychiatric programs because there are no beds for them in the community.

The state is being fined $1,000 each day that situation continues.

McKee’s proposal for early intervention and children in state care, part of a $113 million plan for using funds from the federal American Rescue Plan Act (ARPA), would have immediate effect if it passed the General Assembly.

In October, spokesmen for House Speaker Joseph Shekarchi and Senate President Dominick Ruggierio said they are “aware of the crisis and working with their colleagues and stakeholders. They are willing to consider solutions. “

Since then, the House Finance Committee has taken testimony on the workforce crisis, but the House leadership has signaled it will not meet before the regularly-scheduled session of the General Assembly in January.

Asked again whether the General Assembly might meet before the end of the year, the spokesmen for Shekarchi and Ruggierio said Dec. 3 in a statement to Developmental Disability News:

“The House and Senate Finance Committees are in the process of conducting a series of hearings on potential ARPA expenditures, including the Governor’s proposal and ideas from other groups. We are meeting regularly with Governor McKee, as recently as Wednesday, December 1. Our intent remains to act in the near future to address the immediate needs of Rhode Island residents and businesses.”

The category that has undergone perhaps the greatest scrutiny and analysis has been Rhode Island’s services for adults with developmental disabilities, the subject of a 2014 consent decree and multiple court orders intended to correct violations of the Americans With Disabilities Act by transforming a segregated system of care to one that is individualized and integrated in the communities of participants.

The federal oversight connected to the consent decree – which has now run seven years and nearly eight months – is due to expire in another two and a half years, on June 30, 2024.

And the U.S. Department of Justice has made it clear that a new system must be up and running smoothly for at least a year before it will sign off on compliance. That timeline, in effect, allows only 18 months, until July 1, 2023 for the transformation to be complete and full implementation to roll out without a hitch.

But so far, the state has not even put a dollar figure on the cost of such an overhaul.

Still, a spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) says the department has every intention of complying with the 2024 deadline.

To avoid contempt of court – and hefty fines - the state laid out a wide-ranging action plan for compliance in October.

The first step is the selection of a consultant to review the rate structure for developmental disability services – expected by the end of the year, according to a BHDDH spokesman. The target date of Dec. 31 is two months beyond the Nov. 1 deadline the state set for itself, although BHDDH has told the court it is working in good faith with the state purchasing division to complete the task.

In the meantime, many adults with developmental disabilities have had their service hours reduced by half or more as the system has failed to recover from the pandemic lock-down of 2020. The consent decree requires 40 hours of service a week. Some service recipients are currently getting less than 10 hours.

After court-ordered negotiations between state officials and providers, the General Assembly raised the starting hourly wage for direct care workers from $13.18 to $15.75, effective July 1.

There has been no detailed analysis yet on the effect of the wage increase on the workforce. But Spears, the CPNRI director, said that anecdotally, the raise seems to have been most effective in persuading existing direct care personnel not to quit their jobs.

The raise seems to have had a modest impact effect in attracting new employees, but “nowhere near” the number needed to comply with the consent decree, she said.

In 2020, a consultant for providers calculated that the state needs to expand the direct care workforce by about 38 percent – to a total of 2845 - to implement the community-based system required by the consent decree.

BHDDH has proposed an $18 starting wage effective next July 1 in its budget request to McKee. By 2024, that rate must move up to $20 an hour, according to an order by Chief Judge John J. McConnell of the U.S. District Court.

With the higher wages, recruitment efforts are expected to emphasize training and professional standards for caregivers, who have complex responsibilities.

Delta Variant Prompts Concerns About New RI In-Person Open Meeting Rules

This article is reprinted with permission from RINewsToday

July 24, 2021/RINewsToday

Exclusive to RINewsToday

By Bob Cooper, Executive Secretary, RI Governor’s Commission on Disabilities

Cooper Photo Courtesy RINEWSTODAY

Friday July 23rd was the last day people with underlying health conditions that increase their risk of severe COVID-19 complications are able to safely participate on local and state government boards and commissions, via the telecommunication devices (Zoom, MS Teams, telephone).

The COVID Executive Order that allowed the use of telecommunication devices by members of local and state government boards and commissions expired.

Within the community of people with disabilities, there is fear of going back to in-person meetings while the COVID Delta Variant is present and is capable of infecting already vaccinated people.

Do we resign from a government board to protect our health? Do we take the chance that everyone attending a meeting is not only vaccinated but hasn’t become a “breakthrough” carrier?

“From a nurse’s viewpoint and a member of the Governors Vaccination committee, I am opposed. I would not have felt this way at the beginning of July, but have since reconsidered it. With the numbers soaring again, it will endanger people who could be vulnerable. Your group [Governor’s Commission on Disabilities] is a perfect example of that vulnerability. Many people fearful of this escalation will not attend as they would on Zoom. Again it would be harmful to rescind this order” said Kathleen Heren, Rhode Island State Long Term Care Ombudsman.

Deb Kney of Advocates in Action observed, “The fact is, there’s really no way to know who is vaccinated, and who isn’t, so why risk people who may have compromised immune systems? I say that from a professional point of view, but also as someone who’s immunocompromised. I also know from experience over the previous year that we’ve had a higher attendance rate at public meetings than in previous years with in-person meetings. If nothing else, Zoom helped us take on that age-old LACK OF TRANSPORTATION issue that so many of the people we work with, and for, are forced to deal with day to day.”

Tina G. Pedersen, RAMP (Real Access Motivates Progress, President / CEO / Founder said, “I believe there should be a hybrid model, for I see pros and cons on either side. I also think it should be a guideline of space for meetings. Example, the conference room at the GCD (Governor’s Commission on Disabilities) does not allow space to distance with all of us [present] and mobility devices. With the Delta Variant, and some unvaccinated, this is a very big risk to some.”

The Governor’s Commission on Disabilities has limited authority to “[g]rant a waiver that allows a member to participate by electronic communication or telephone communication only if the member’s disability would prevent him/her from being physically present at the meeting location, and the use of such communication is the only reasonable accommodation”.

The Commission is seeking comments as it develops guidance regarding the medical conditions that would not allow a member of a public body from attending meetings “solely by reason of his or her disability” from participating at a meeting of a public body due to the heightened risk of exposure to attendees who may be COVID-19 positive.

Since the Executive Order expires Friday, 7/23/21, please submit comments to Bob Cooper, via email, bob.cooper@gcd.ri.gov; fax 401-462-0106, or mail John O. Pastore Center, 2 Cherry Dale Court, Cranston, RI 02920-3049, by Wednesday 7/28/21.

Bob Cooper, Executive Secretary, RI Governor’s Commission on Disabilities

Background

Governor McKee’s Executive Order 21-72 expired on July 23rd and virtual or teleconference meetings will no longer be allowed. Public bodies must return to meeting in-person in accordance with the Open Meetings Act.

Starting Saturday, July 24th, ALL public bodies (public boards and commissions) MUST meet fully in-person, to stay compliant with the Open Meetings Act.

Public bodies can livestream their meetings while meeting in-person. However, a member of a public body cannot join their meeting virtually, even if the public has formal access to the meeting in public and virtually.

Regarding testimony, public bodies may permit virtual testimony. However, if the public body does permit virtual testimony, it must also permit in-person testimony.

Filing requirements for meeting agendas and minutes remain the same. Contact for more details and questions: Public Information team at: opengovernment@sos.ri.gov or (401) 222-3983.

To read open meetings guidance from the Office of the Attorney General of Rhode Island, click here.

RI House To Vote On Pay Hikes For RI DD Workers

UPDATE: On June 24, the House passed a $336.7 million developmental disabilities budget as recommended by the Finance Committee. It is part of an overall overall $13.1 billion spending package proposed for the fiscal year beginning July 1 that now goes to the Senate.

By Gina Macris

Rhode Island would add an estimated $2.53 an hour to entry-level pay for caregivers of adults with developmental disabilities in the proposed state budget that it is headed for a vote in the House Thursday, June 24. But it’s not clear if the wage hike will be enough to attract needed workers.

The proposed wage increase, from an estimated $13.18 to $15.75 an hour, resulted from months-long, court-ordered negotiations intended to develop a three-year plan to strengthen Rhode Island’s private developmental disability system so it will enable the state to comply with a 2014 civil rights consent decree.

The proposed wage package also includes a $3.58 hourly increase for supervisory personnel, from $18.41 to an estimated $21.99 an hour.

The House Finance Committee accepted the negotiated rates during a June 17 vote on the overall budget for the fiscal year beginning July 1. But it rejected Governor Dan McKee’s plan to privatize the state’s own parallel group home system, saying 50 state jobs that would have been eliminated should be restored to the state payroll.

In all, the state and privately-run developmental disabilities systems would get nearly $336.7 million in the fiscal year beginning July 1, an increase of roughly $32.7 million over the current budget of $304 million.

The privately-run system would get a total of $297.6 million, or about $37.2 million more than the current allocation of $260.4 million, according to figures from the Office of Management and Budget (OMB) and the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

The higher total reflects the cost of the pay hikes, $39.7 million in federal-state Medicaid funding, including the redirection of $13 million of a $15 million “transition and transformation fund” the McKee had administration originally had proposed for court-ordered system reforms to comply with the consent decree.

Chief Judge John J. McConnell, Jr. of the U.S. District Court had ordered the state to come up with a three-year plan by June 30 that would spell out what it intends to do to comply with the consent decree by the end of the decade-long implementation period June 30, 2024.

In a recent report, an independent court monitor told the judge that the second and third years of the plan were not discussed during the recent negotiations, and he recommended that the state continue to meet with private service providers and others on a weekly basis to discuss unresolved issues.

In a recent hearing before the House Finance Committee’s Subcommittee on Human Services, the director of the Division of Developmental Disabilities, Kevin Savage, said the state has a “difficult” relationship with the federal court.

While providers have called the raises a significant step, they say they do not believe that the new rate of $15.75 will affect their worker shortage when Massachusetts and Connecticut are paying more.

On July 1, minimum wages in Connecticut will increase to $16.50 an hour for private-sector direct care workers in the first year of a two-year contract between that state and the Service Employees International Union (SEIU). The rate will jump to $17.25 on July 1, 2022.

Massachusetts will pay direct care workers at privately-run agencies a minimum of $16.10 an hour beginning July 1, the final year of a three-year contract with another branch of the SEIU, according to a salary schedule on a Massachusetts state website related to “personal care attendants.”

Tina Spears, executive director of the Community Provider Network of Rhode Island, has said in recent weeks that she has recommended data be collected on hiring and retention to enable the court to gauge whether the wage hikes help providers expand their workforce.

As it now stands, the private system lacks about 37 percent of the workforce it needs to support individuals in jobs and non-work activities in the community as required by the consent decree and the Integration Mandate of the Americans With Disabilities Act, according to a recent report made to the court.

In other changes, the House Finance Committee moved up by one year the date for including the developmental disabilities caseload in an important budget-planning exercise, the Caseload Estimating Conference. That means the change would take effect in 2021, instead of 2022.

Judge McConnell has ordered that the developmental disabilities caseload be part of the discussion at the Caseload Estimating Conference beginning November of this year to bring transparency and consistency to budgeting for these services.

House Finance recommended the Executive Office of Health and Human Services give assistance to the BHDDH to prepare the caseload data for presentation at the November conference.

The McKee administration never explained why it originally proposed that the change be made in 2022.

In another court-ordered reform, an OMB spokesman confirmed that the allocation for the privately-run system of services contains $6.8 million to fully fund annual authorizations that set an individual spending limit for each person receiving developmental disability services.

For the last decade, the authorizations have been available on a quarterly basis. Any amount not utilized within a particular three-month period cannot be carried over to the next quarter. And the fee-for-service reimbursement system now in place means that providers cannot bill for those who do not participate on a particular day, for whatever reason, even though the agencies may incur the same costs for staffing.

Providers and service recipients and their families alike say that annual funding will allow them greater flexibility in planning their programs.

"Significant" Raises Proposed For RI DD Workers After Court-Ordered Talks

By Gina Macris

RI Governor Dan McKee’s proposal to raise wages from $13.18 to $15.75 an hour for caregivers of adults with developmental disabilities might prevent a widespread worker shortage from getting worse.

But those who have had the frustrating experience trying to recruit and retain workers at the current lower rate told the House Finance Committee June 10 that the proposed raise, while significant, will not be enough to ease the labor crisis that prevents the state from complying with a 2014 civil rights consent decree affecting adults with developmental disabilities.

Other advocates made the broader statement that that paying a living wage to caregivers of all vulnerable populations is a moral imperative. Raising pay to attract more workers also is essential to guaranteeing the civil rights of vulnerable people, no matter what their disability, they said.

The Integration Mandate of the Americans With Disabilities Act, (ADA), reinforced by the 1999 Olmstead decision of the U.S. Supreme Court, says that those with disabilities have a right to receive the services they need to live regular lives in their communities.

If the state does not adopt a comprehensive Olmstead plan to provide integrated, community-based services to all people with disabilities, it will remain vulnerable to more litigation like the ADA complaint of the U.S. Department of Justice (DOJ) which led to the 2014 consent decree, said a spokesman for the Rhode Island Developmental Disabilities Council.

As it is, Rhode Island’s Director of the Division of Developmental Disabilities acknowledged at the House Finance Committee hearing that the state has a “difficult relationship” with the U.S. District Court and the DOJ over the status of implementation and the unfinished work ahead as the agreement nears its conclusion in 2024.

I/DD Population Sitting At Home

Seven years after Rhode Island signed the consent decree, agreeing to end the segregation of sheltered workshops and day care centers, many adults with developmental disabilities are no better off.

For example, Jacob Cohen of North Kingstown, who once had a full schedule of activities in the community, now gets only three hours a week of support time, his father, Howard, told the Finance Committee in written testimony.

At AccessPoint RI, a Cranston-based service agency, 50 of 109 supervisory and direct care jobs are vacant and 60 out of 160 clients are not getting any daytime services, according to the executive director.

The consent decree calls for 40 hours a week of employment-related supports and other activities in the community.

A consultants’ report commissioned by providers says the private service providers lack 1,081 of the 2845 full time direct care workers they need to carry out the requirements of the consent decree. COVID-19 exacerbated the workforce shortage but did not cause it, the consultants said. The consultants said that depending on living arrangements, persons with developmental disabilities have experienced a reduction in services ranging from 49 percent to 71.6 percent, with those in family homes having the severest cutbacks.

The McKee administration’s proposed $15.75 hourly reimbursement rate would represent a wage hike of about $2.50 or more for direct care workers – roughly 20 percent.

The state does not set private-sector wages directly but reimburses the private agencies for wages and employment-related overhead, like taxes and workers compensation. Some providers pay a little more than the current hourly minimum of $13.18, by subsidizing wages with revenue from other types of services.

In addition to raising direct care worker pay, the proposal would raise reimbursement levels for supervisors’ wages from $18.41 to $21.99. There would be no raises for support coordinators or job developers, who are paid $21.47 an hour. Nor would those in a catch-all “professional” category receive a pay increase. They are paid $27.52 an hour, according to a presentation the House Fiscal Advisor made to the Finance Committee.

The overall wage increase would cost a total of $39.7 million in federal-state Medicaid funding, including $16.8 million in state revenue and $22.9 million in federal reimbursements.

Of the state’s share of the cost, $13 million would be re-directed from a $15 million “transition and transformation fund” for developing systemic reforms aimed at quality improvement and the reimbursement model that pays private providers. The reimbursement model was redesigned a decade ago to favor segregated care and has not been fundamentally changed since then.

Robert Marshall, the spokesman for the Rhode Island Developmental Disabilities Council, warned that gutting the so-called “transition and transformation fund” could heighten the state’s non-compliance with the consent decree and leave it open to additional federal action.

House Fiscal Office

With the governor’s proposed raises included, the allocation to the private developmental disabilities system would jump from $260.3 million in federal-state Medicaid funding in the current fiscal year to $297.7 million, an overall increase of $37.4 million, according to the presentation of the House Fiscal Officer, Sharon Reynolds Ferland.

Tina Spears, executive director of the Community Provider Network of Rhode Island (CPNRI), a trade association which negotiated the wage hike with the state, called it a “notable first step in rebuilding the workforce serving people with intellectual and developmental disabilities.”

SPEARS CPNRI

“This wage increase will improve the lives of both those who do the work and the families who are served by that work,” she said in written testimony.

But Spears, who had pressed for a rate of $17.50 an hour, told the committee that the state’s final offer of $15.75 does not make it competitive in attracting new workers.

Complicating the salary issue, the administration expects the private agencies to accept group home residents from the state-run developmental disabilities system, which it plans to phase out. The current allocation of $29.7 million for state-run group homes, named Rhode Island Community Living and Supports (RICLAS) would be cut to $9 million in the next budget.

Both the unions representing RICLAS workers and the private providers have expressed skepticism that the privatization is feasible.

The budget calls for the reduction of 50 RICLAS positions. RICLAS pays workers a starting rate of about $18.55 an hour, more than $5 above the current entry-level pay in the private system, and about $2.80 above the proposed new private-pay rate.

On July 1, minimum wages in Connecticut will increase to $16.50 an hour for private-sector direct care workers in the first year of a two-year contract between that state and the Service Employees International Union (SEIU). The rate will jump to $17.25 on July 1, 2022.

Massachusetts will pay direct care workers at privately-run agencies a minimum of $16.10 an hour beginning July 1, the final year of a three-year contract with another branch of the SEIU, according to a salary schedule on a Massachusetts state website related to “personal care attendants.”

Massachusetts already siphons off some of Rhode Island’s best caregivers, said Michael Andrade, President of CPNRI and CEO of Pro-Ability at the Bristol County ARC.

Ruggiero Capitol TV

During the hearing, Rep. Deborah Ruggiero asked Jonathan Womer, Director of the Office of Management and Budget (OMB), to tell her who has been leading the state’s response to the consent decree during the last few years and explain why there has been “so little progress.”

She also wanted to know why she’s hearing reports that the state is “not in very good standing” with the Court or the DOJ and what is being done to change that situation.

Womer introduced Kevin Savage, who has been in charge of the Division of Developmental Disabilities since last July.

“While we haven’t met a number of benchmarks for getting people to work” in the community, Savage said, “there are no longer any sheltered workshops in Rhode Island.”

SAVAGE

“That’s a major achievement of the consent decree,” Savage said. He added that because of the pandemic, meeting goals for employment and community integration has been “extremely challenging,”

During state budget preparations, which began last fall during great economic uncertainty, OMB asked state agencies to submit proposals with 15 percent reductions in their spending plans. The economic outlook has brightened considerably since then.

In January, Chief Judge John J. McConnell, Jr. of the U.S. District Court said Rhode Island must raise direct care wages to $20 an hour by 2024 to attract more direct care workers to Rhode Island providers, who do the work in the field necessary to enable the state to comply with the consent decree.

Two months later, in March, the governor submitted a budget proposal that offered no raises. Then came court-ordered negotiations, which resulted in the administration’s proposal for the $15.75 rate, as well as a separate budget amendment that would comply with another court order, making the developmental disabilities caseload part of formal, consensus-building state budget preparations in November of this year.

During the budget hearing, Savage said, “We are having a difficult time in our relationship with the Court. We do want to repair that.”

“We have tremendous respect for the judge and tremendous respect for the court monitor. We work with some of the best providers you can work with, so it’s really not a matter of not wanting to work with the providers or the court monitor,” Savage said.

The negotiations took too long, he acknowledged.

“We need to pick up the pieces and move forward faster,” he said, engaging the community “much more robustly than we have.”

“We need to get to get to $20 by 2024,” to “stabilize the workforce,” and make other reforms as part of a court ordered, comprehensive three-year compliance plan, he said.

Rep. Alex Marszalkowski, D- Cumberland, chairman of the Human Services Subcommittee of the House Finance Committee, asked why the wage increases would apply to group home workers when the consent decree is limited to issues related to daytime services.

Savage responded that “if we stabilize one part of the workforce, we destabilize the other; the only path is to stabilize the entire system.”

Emphasis on Civil Rights

Later in the hearing, Spears, the CPNRI director, emphasized that hard-working caregivers deserve a living wage and noted that “civil rights protections” are at the heart of the 2014 consent decree. “It’s essentially a corrective action plan to resolve civil rights violations and make sure they never happen again,” she said.

She added: “We are seven years into a ten-year agreement, and there is a tremendous amount of pressure from the Court and the U.S. Department of Justice to achieve the established benchmarks.” As it now stands, the private sector cannot deliver on the compliance the state needs, Spears said.

The Chair of the Long Term Care Coordinating Council (LTCCC) and the representative of the Developmental Disabilities Council each applied a broader perspective on the budget amendments, saying the General Assembly must address the workforce and quality-of-life issues across all vulnerable populations.

Maureen Maigret, chair of the LTCCC, recommended the General Assembly use some of the current Medicaid reimbursement rate, enhanced under provisions of the American Rescue Plan Act, to raise the wages of direct care workers funded by Medicaid’s Home and Community Based Services (HCBS) to the same level proposed for those working in developmental disabilities.

“The issues facing other types of home and community-based services and residential programs are similar to providers of services for persons with developmental disabilities,” Maigret said in written testimony, citing low wages, high turnover and staff burnout, all exacerbated by the pandemic.

“And we know that almost a majority of these workers are women and persons of color whose value has historically been under-valued,” Maigret said.

“Efforts to achieve wage parity for all direct care staff working in government-subsidized Home and Community-Based Services (HCBS) is imperative if the state is to have a quality and accessible LTSS (Long Term Services and Supports) system with appropriate options for persons needing care,” she said.

Marshall, of the DD Council, said Rhode Island could use some of the one-time stimulus funding under provisions of the American Rescue Plan Act to develop an Olmstead plan, a multi-year blueprint for conforming to requirements of the ADA’s Integration Mandate.

Only seven states — Rhode Island among them - still lack such a plan, he said.

Because of the Olmstead decision, Medicaid changed the rules of Home and Community-Based Services programs to help vulnerable persons live as independently as possible at home or in home-like settings.

Marshall said Rhode Island has been in violation of Medicaid’s regulations on home and community-based services since 2014 and is “vulnerable to yet another Department of Justice lawsuit or ineligibility for federal Medicaid match.”

Former Hospital CEO Tapped To Lead RI BHDDH

By Gina Macris

Richard Charest, former president and CEO of Landmark Medical Center and currently a consultant to the troubled Eleanor Slater Hospital, has been nominated by Rhode Island Governor Dan McKee to lead the public hospital’s parent agency, the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

McKee and Womazetta Jones, Secretary of Health and Human Services, made the announcement May 26, saying, "We are confident that Richard's decades of experience in the health care field have prepared him to lead this department, which provides vital services and support to some of Rhode Island’s most vulnerable populations."

McKee has submitted Charest’s name to the Senate for its advice and consent. “We are pleased to have recruited a strong candidate who can help improve departmental policy, operations, staffing and patient care,” McKee said in a statement.

Secretary Jones, meanwhile, said that “BHDDH, particularly Eleanor Slater Hospital, has many urgent needs that will benefit from Richard’s leadership and healthcare and hospital management experience.”

“Those who rely on BHDDH for their behavioral and medical needs deserve the best care possible,” she said.

Neither Jones nor McKee mentioned the needs of adults with developmental disabilities in their statement. Roughly two thirds of the $486 million BHDDH budget is allocated to the Division of Developmental Disabilities, which is grappling with a workforce crisis and an approaching deadline for complying with a long-standing civil rights decree.

Charest worked his way up the ladder at Landmark Medical Center, where he “successfully led hospital operations and finances through receivership, reassured the community and engaged employees and medical staff to ensure uninterrupted high-quality care,” according to the statement from McKee and Jones. Charest also has served as President and CEO of the Rehabilitation Hospital of Rhode Island.

He has an undergraduate degree in pharmacy from Northeastern University and an MBA in Health Care Administration from Bryant University.

RI DD Budget Emphasizes Quality Improvement, But Services Remain Scarce

By Gina Macris

April 9 marks the beginning of the eighth year of a ten-year period during which Rhode Island has pledged to comply with a federal mandate ensuring that adults with developmental disabilities enjoy meaningful lives in their communities - just like everyone else.

In other words, Rhode Island has three more years to prove to the U.S. Department of Justice that the state no longer violates the Integration Mandate of the Americans With Disabilities Act and has done everything it agreed to do under a federal consent decree signed in April of 2014.

In budgetary terms, the state has just three more fiscal years to accomplish a complete and potentially costly overhaul of services for about 4000 adults with intellectual and deveopmental challenges.

With this timetable in mind, individuals with developmental disabilities, their families, advocates, the private agencies the state relies on to provide services, and a federal judge are all focused on Governor Daniel McKee’s budget proposal for the fiscal year beginning July 1, year eight of the march toward compliance.

Daniel McKee

McKee’s overall state budget recommendation, which allocates $294 million in state and federal funds for developmental disability services, is now in the hands of the state legislature.

Those associated with the developmental disability community hoped to find a higher allocation, but instead the governor’s budget called for an unexpected $10-million reduction in overall spending. Even more puzzling for many, including individuals and families who have gone a year with few, if any, services, was the absence of an hourly wage hike to attract workers back into the field.

The U.S. District Court, which is supervising the state’s effort to comply with the consent decree, has emphasized that a poorly-paid, unstable workforce and inadequate state reimbursement rates to private providers are the biggest issues standing in the way of compliance.

The budget’s $10-million reduction reflects a decline in the caseload, the state developmental disabilities director, Kevin Savage, told a public forum March 22.

Developmental disabilities officials have not produced any caseload figures to back up that claim, and publicly available data indicate the number of people eligible for services has increased and will continue to do so.

Kevin Savage

The governor’s budget also includes a $15 million set-aside for innovation and quality improvement efforts for the first of the final three years of the state’s compliance effort, indicating that officials are prioritizing administrative reforms required by the consent decree.

For example, some of the $15 million would be used to develop an alternate to the existing fee-for-service reimbursement model, according to officials of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

BHDDH officials also say they plan to address the wage issue in the fiscal year beginning July 1, 2022. They say that timetable could speed up if the state uses federal COVID-19 relief money from the American Rescue Plan, which was enacted just a few days before Governor McKee submitted his budget to the General Assembly.

“Investments in the DD system cannot only about the sufficiency of funding for the system,” BHDDH officials said in a statement issued March 23. “It must also be about how funds in the system are spent and how to use money to drive better outcomes for adults with intellectual and developmental disabilities,” they said.

Judge McConnell

The state’s timetable for addressing the issue of low wages would arguably cut it very close for achieving compliance with the consent decree, given the definition of compliance the U.S. Department of Justice has presented before Chief Judge John J. McConnell, Jr. of the U.S. District Court.

DOJ lawyers have said that full or “substantial” compliance means that all the required changes have been up and running smoothly for at least a year before a particular agreement is set to expire.

In this case, Rhode Island will have to have all the required changes up and running smoothly by July 1, 2023 for the state to achieve compliance by June 30, 2024.

BHDDH officials have aimed at completing implementation by December, 2022, giving them just six months to fine tune everything before the clock starts ticking on that critical final year. The consent decree has provisions for extending federal oversight beyond 2024.

As for the here and now, the first court-ordered budget negotiation meeting on McKee’s $294 million proposal for the fiscal year beginning July 1 was scheduled for March 26 between providers, incuding the Community Provider Network of Rhode Island (CPNRI), and state officials.

Although Judge McConnell said in a court order in January that direct care worker wages should be raised to $20 an hour, he indicated in a subsequent order that he would accept solutions that are negotiated between the state, providers, and the developmental disabilities community.

McConnell wants the first of three monthly budget progress reports from the state on April 30 – in less than six weeks.

CPNRI is seeking increased reimbursement rates that will allow agencies to raise average direct care pay from $13.08 to $17.50 an hour. The starting rate for workers in the state-run group home system is about $18.50 an hour. BHDDH wants to shift responsibility for those in the state-run system to private service providers next year.

Tina Spears

“Improving capacity and ensuring access to services starts with a well-trained, adequately compensated staff,” Tina Spears, executive director of CPNRI, said in a statement.

“We cannot continue to have the turnover rates (an average of 30 percent a year) the vacancy rates (an average of one in 5 jobs unfilled) and bare bones supervisor and management structures and produce measured outcomes,” she said.

In theory, CPNRI can support reforms to emphasize quality and outcomes, “but until we are able to invest in our workforce, it is not something we can engage in or support,” Spears said.

In a statement March 23, BHDDH officials said Governor McKee’s budget proposal is intended to be a “starting point” in the overall budget process.

A total of $21 million will be dedicated to improving quality and access to services and relieving administrative burdens, according to BHDDH and the Office of Management and Budget. The breakdown includes:

• $7 million for financial incentives to providers to promote quality improvement efforts and improved access to services in communities.

• $4 million for an outcome-based payment methodology that would serve as an alternative to the fee-for-service model that is now in place

• $4 million for the Brown Policy Lab to provide technical assistance and detailed implementation plans to state officials, including funding for two fulltime positions.

In addition, there would be about $6.7 million made available for services that the state has been able to count as savings as part of its quarterly authorizations to individual consumers.

In current the fee-for-service system, any funds not used within a particular three-month period cannot be carried over to the next quarter. Because it’s difficult for individuals to have 100 percent attendance at all scheduled activities - even an afternoon reserved for a doctor’s appointment reduces reimbursement to providers - consumers end up leaving a certain amount of money unspent during a particular quarter.

The money appears in the budget, but through repeated experience, state officials have learned to count it as savings. That funding will now have to be made available as the state switches to annual funding authorization, which is required by the court to give consumers more flexibility in how they arrange their services.

BHDDH says the details of the other initiatives will be worked out with providers.

State officials say that providers can use part of the $4 million set aside for an alternate payment model to increase wages.

But Spears, the CPNRI director, said that option is unrealistic, because providers run the risk of the innovation grant ending without having continued funding to maintain the higher wages. And it’s not clear how many of the three dozen private providers would be able to participate in the development of the alternate payment model, she said.

Reacting to the state officials’ spending plans, Spears said, “At this point, CPNRI does not fully understand how this funding is structured, or how it would be deployed, “

She added: “CPNRI cannot support a budget proposal that does not fully fund services for individuals with intellectual/developmental disabilities, nor do we support diverting funds from service delivery to invest in organizational transformation.”

Friday Briefs:

Consent Decree Coordinator Named

• Aryana Huskey has been named Rhode Island’s next Consent Decree Coordinator. She will work with multiple agencies of state government to present a coordinated response to the U.S. District Court on the state’s compliance efforts with a 2014 Olmstead consent decree.
  

  Huskey will begin her new role March 29. She comes to the job “with an extensive background in health and human services, with experience in delivering direct services to vulnerable populations in Rhode Island, and a clinical background,” said Secretary Womazetta Jones and Claire Richards, executive counsel to governor, in an email to various state officials.

  Huskey will be a “significant asset to the team in working with the stakeholders involved in the Consent Decree,” Jones and Richards said. No other details were immediately available.

Save The Date - Mon. March 22

• A virtual public forum hosted by the Rhode Division of Developmental Disabilities will be Monday, March 22, from 3 to 4:30 pm, Advance registration is required with Advocates In Action, which is handling technology and logistics. Participants may register here.

RI Entrepreneur With Autism Competing in FedEx Contest

• Michael Coyne, owner of Red, White, & Brew Coffeehouse in North Smithfield and a graduate of the business development program of the Rhode Island Developmental Disabilities Council, is competing for a $50,000 grand prize in a nationwide small business contest sponsored by FedEx. Your vote will help get Michael to the next level!

  He is featured in an article in RI News Today, which also includes a link for voting.

Judge: RI Must Expand DD Budget Or Risk Olmstead Consent Decree Noncompliance

By Gina Macris

Judge McConnell

Rhode Island will not be able to meet a 2024 deadline for complying with a 7-year-old civil rights agreement unless it begins allocating money now to attract an adequately-paid, skilled workforce to serve adults with developmental disabilities in their communities.

So says Chief Judge John J. McConnell, Jr. of the U.S. District Court in a nine-page order issued March 16 clarifying what it will take to comply with a 2014 consent decree correcting Rhode Island’s violations of the Integration Mandate of the Americans With Disabilities Act (ADA).

Five days ago, on March 11, Governor Daniel McKee submitted a state budget request to the General Assembly that does not propose any rate increase for direct care workers. These workers are employed by the private agencies the state relies on to carry out provisions of the 2014 Olmstead consent decree.

Under the current rates, providers are able to pay front-line workers an average of $13.08 an hour, or $1.58 above the state’s minimum wage of $11.50, McConnell said in the statement, which amounted to a tutorial on the issues affecting compliance.

The $11.50 rate went into effect last October, and McConnell pointed out there are bills pending in the General Assembly for additional raises.

“The functions and responsibilities of staff who provide direct support to adults who have intellectual and developmental disabilities are significantly more challenging than many minimum wage positions,” McConnell said.

In several states the pay of direct support staff is considerably higher than minimum wage, he said. Utah, for example, has set its direct care rate at 72 percent above minimum wage.

He drew a straight line connecting low wages, high turnover, and an inability of the provider agencies to find a well-trained, stable workforce capable of providing an array of services that will enable adults with developmental disabilities to live meaningful lives in their communities in accordance with the ADA’s Integration Mandate.

One in five jobs in private agencies are currently vacant, and agencies report an average annual turnover of about 30 percent, according to a survey by an independent court monitor conducted in February. In addition, 80 percent of adults and families who direct their own programs said they had difficulty finding staff, and 68 percent said they had difficulty retaining staff, according to the monitor.

McConnell’s latest statement underlined an order he issued Jan. 6 which requires the state to raise workers’ wages to $20 an hour by 2024 as part of a comprehensive overhaul of services from center-based group care to one-on-one or one-to-two staffing in the community.

He said the state must collaborate with service providers and advocates in the community to develop a three-year budget strategy for compliance with the consent decree and give him monthly progress reports at the end of April, May, and June.

The judge cited a 2020 report of the state’s own consultants that concluded the provider agencies are financially “fragile and profoundly undercapitalized.”

McConnell also felt it necessary to say that the “entirety of the State” is a party to the consent decree, not merely the state agencies identified in the document.

The McKee administration and the leadership of the House and Senate had no immediate comment on McConnell’s order.

The judge reminded the state that the findings of the U.S. Department of Justice in 2014 cited “multiple concerns” about the state’s failure to comply with the Integration mandate.

Among them were:

• A lack of resources

• Failure of the state’s rate-setting methodology and reimbursement model to promote integrated supported employment and day services

• The inflexibility of the state’s reimbursement model.

McKee’s budget for the fiscal year beginning July 1 includes a proposed $15 million “transformation and transition fund,” but it’s not clear exactly what that money will pay for.

There are five committees already working under the supervision of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals on proposed administrative reforms.

But McConnell has signaled he wants the planning complete by the end of June and the implementation to begin at the start of the new fiscal year in July.

He also noted that the integration mandated by the consent decree are also required by the Centers for Medicaid and Medicare Services if the state is to continue qualifying for federal Medicaid reimbursement under the Home And Community-Based Services (HCBS) Final Rule. Like the consent decree in Rhode Island, that rule gets its authority from the Olmstead decision of the U.S. Supreme Court, which in 1999 clarified the Integration Mandate of the ADA.

“Rhode Island is seven years into the Consent Decree,” McConnell said. (The eighth year begins April 9.)

“With three years remaining, there is significant work still to be completed,” he said in conclusion.

Click here to read Judge McConnell’s order of March 16.

Proposed $10M Cut In RI DD Spending Overshadows Reform Plans

By Gina Macris

Thursday’s initial briefing on Governor Daniel McKee’s proposed budget for adults with developmental disabilities highlighted a $15-million set-aside to plan changes in the system, in response to a federal court order enforcing a 2014 civil rights consent decree.

At the same time, the budget legislation submitted to the General Assembly later in the day, on March 11, shows that overall spending on developmental disabilities would be $10 million less than spent this year.

McKee proposes adding $476,573 to the current developmental disabilities allocation for a total of nearly $304.5 million in federal and state Medicaid money and miscellaneous other sources of funding to close out the current fiscal year June 30.

The budget bill for the next fiscal year cuts overall spending on developmental disabilities to $294.4 million. That total includes $5 million in federal funds and $10 million in state revenue earmarked in the budget for the $15-million “transformation and transition fund” to plan reforms to comply with the consent decree.

The spending cut reflects projected savings from phasing out the costly state-run group home system. Residents would be moved to less costly group homes run by private service providers, according to the budget plan.

But the private agencies, who were in a precarious financial position even before the onset of the COVID pandemic a year ago, have been reluctant to take on additional clients in recent years because the amount the state pays does not cover the actual cost of services, according to repeated testimony before House and Senate finance committees, as well as testimony in federal court.

The state’s own consultants, the non-profit New England States Consortium Systems Organization, highlighted the providers’ fiscal problems and the way the demands on them strained capacity as part of an exhaustive 18-month study completed last summer for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

The core long-term problem, exacerbated by COVID-19, is an inability to find workers for jobs that carry a high degree of responsibility but provide an average starting wage of about $13.18 an hour, less than some fast food and retail chains and less than Amazon, according to testimony before Chief Judge John J. McConnell of the U.S. District Court.

McConnell, who enforces compliance with a 2014 civil rights decree requiring the integration of adults with developmental disabilities in their communities, has ordered the state to raise workers’ wages to $20 an hour by 2024 as part of a comprehensive three-year overhaul of the developmental disabilities system.

The state budget indirectly controls how much the private providers can pay their workers by setting reimbursement rates for various services, but no money in McKee’s proposal is carved out for a rate increase.

Nor does it appear the McKee administration anticipates the heightened level of spending in the next several years that would support the kind of investment needed to comply with requirements of the consent decree to accommodate clients’ desire to be part of their communities, at work and at play. The consent decree gets its authority from the Integration Mandate of the Americans With Disabilities Act.

McKee’s budget summary anticipates costs for developmental disabilities services will increase 4 percent annually through 2026.

A 4 percent annual increase would come nowhere close to fulfilling the court-ordered hourly wage of $20 an hour which, according to one estimate, would require an budget hike exceeding 45 percent.

The budget summary indicates the state aims to save a net $11.4 million by transferring the operations of the state-run group home system to the privately-run system by October 1.

The state-run system, called Rhode Island Community Living and Supports, (RICLAS) is currently allocated $29.7 million to care for 116 group home residents. The budget summary says transferring RICLAS operations to the private group home system would save $19.2 million in federal-state Medicaid funds in the RICLAS account in the fiscal year beginning July 1.

At the same time, a total of $7.8 million would be added to the private provider system to care for the former RICLAS residents. The budget for the next fiscal year would still leave about $9 million in RICLAS through June 20, 2022. A BHDDH spokesman could not immediately say how long the RICLAS phase-out would take.

The $19.2 million cut in RICLAS would eliminate the equivalent of 50 full-time jobs, mostly from attrition or transfer, the BHDDH spokesman said. RICLAS caregivers are paid a minimum of $18 and receive state employee benefits.

The last time BHDDH announced plans to move large numbers of people in residential care, in 2016, it achieved only a small fraction of the savings the Office of Management and Budget had calculated.

Of 100 persons projected to move from group homes to less costly shared living arrangements in private homes during the first six months of 2016, only 21 made successful matches with families.

Instead of projected savings of $19.3 million, the state recouped a few hundred thousand dollars in that six-month period.

Between March, 2016 and July, 2020, the number of people in shared living arrangements increased from 288 to 399. Since then, the number has decreased to 378, according to BHDDH figures.

The $15-million transformation and transition fund would support a policy and planning effort to carry out reforms required for compliance with the consent decree, according to the budget bill.

BHDDH informed Judge McConnell in February that the changes would take 18 to 24 months to implement, with a target date of December, 2022.

According to the budget language, the fund will be dedicated to:

• Help providers “strengthen” their operations to “support consumers’ needs for living meaningful lives of their choosing in the community”

• Allow providers the chance to participate in a performance-based payment model

• Reduce administrative burdens for providers

• Invest in “state infrastructure” to implement and manage these initiatives

• Prepare for a new way of approaching budgeting of the developmental disabilities caseload in the future.

Beyond the language in the budget bill, there were no details immediately available from BHDDH on what the transformation and transition fund will pay for.

The Arc Rhode Island Comes Back Into Action

By Gina Macris

The Arc Rhode Island, a once powerful advocacy organization for those with developmental disabilities, has come back into action during the last two years under the wing of The Arc of the United States.

Joanna Scocchi

The state organization, which had been dormant for a decade, has grown into an office of four during the last two years. Under the leadership of Joanna Scocchi, it has revived not only its legislative advocacy but it offers support to parents facing special education issues and facilitates partnership-building activities in the community, sometimes one person at a time.

A case in point is the young man who agreed to go out to a Saturday lunch in Newport with his brother and his brother’s girlfriend only on the condition that he could be back home in front of his computer screen in time for his late afternoon “Chat Saturday,” an online social circle.

“People look forward to the day they will have a circle,” says Ken Renaud, associate director of The Arc.

“Chat Saturday” is but one facet of “Circles of Connections,” The Arc’s person-to-person response to the isolation of the COVID-19 pandemic that Renaud said he knew “was going to be really intense for the people with developmental disabilities and their families.”

Ken Renaud

Circles of Connections, which had a soft launch last fall, matches small numbers of people with facilitators around common interests, like special education eligibility and advocacy, family dynamics, and various facets of the transition from school to adulthood, a period that is commonly fraught with anxiety for both young people and their families.

The Circles have generated spinoffs, like a virtual movie outing that grew out of Chat Saturday and a group session with a therapist organized by a participant in another Circle called “The Other Side of Grief,” Renaud said.

“ I like it when you have that seed of an idea, and you plant the seed, and it germinates, and you see it grow,” he said of the evolution of Circles of Connections during the last six months.

The “Circles” concept could serve as a model for building friendships after the pandemic, says Kevin Savage, the state’s Director of Developmental Disabilities.

Darlene Faust

“People are genuinely connecting with one another,” Savage said, noting that some of the groups are led by adults with disabilities.

“The Arc of Rhode Island and others who have supported this effort deserve enormous credit,” he said.

Darlene Faust, facilitator for a Circle focused on healthy relationships, agreed with Savage, saying her experience has been gratifying on a personal and professional level.

The healthy relationship Circle has provided a “safe way for people to socialize and have new friendships and actually take part in some meaningful conversations,” she said. It has “redefined the way that I want to do the work that I do post-Covid.” Faust works as Director of Self-Advocacy and Work Preparedness at Looking Upwards, a service provider.

The connections the Circles make on a personal level reflect the core mission of The Arc as a catalyst for family support and advocacy efforts intended to make the community a welcoming place for people with developmental disabilities.

In 2018, the national organization tapped Scocchi to lead the Rhode Island effort, at first on a part-time basis. Scocchi had moved to Rhode Island from New Jersey twelve years earlier as the mother of a young child with developmental disabilities. A former CEO of a human resources staffing agency, she was then in her forties. She had never dealt with special education issues.

But her advocacy for her son grew into into a one-woman non-profit organization called Rhode Island Advocacy For Children, providing one-on-one help for about 200 families a year.

When The Arc of the United States approached her about re-starting a state chapter, Scocchi insisted on bringing the special education advocacy program with her.

Scocchi’s organization continues as a program of The Arc, now under the direction of Mary Lou Rossi. It fits right in with the vision of the national organization.

Peter Berns

“Our focus as an organization is all people, not just those receiving services through the developmental disability system,” Peter Berns, CEO of The Arc of the United States, explained in a telephone interview.

“So much of the advocacy is focused on the service system, but on a national average, only 20 percent who need help get it through the service system,” he said.

People with developmental disabilities should be valued members of their communities, with the supports they need to realize their potential and have a secure future, he said.

Scocchi says she is driven by a passion for equity and has received invaluable support from the national organization, as well as help from local leaders in tapping into an increasingly collaborative network. At the top of The Arc’s legislative agenda this year is a bill, recently introduced by Rep. Lauren Carson, D-Newport, and others, to create an ombudsman charged with ensuring school districts meet special education requirements.

In addition, adult service providers, advocates, and the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) have begun working closer together to respond to both the COVID-19 pandemic and to the demands of the 2014 Olmstead consent decree. Since last August, five committees organized by BHDDH have been working on court-ordered plans to overhaul the developmental disability service system to meet the inclusive goals mandated by the consent decree.

Scocchi spends a lot of time on the phone or in online meetings, keeping connected on a weekly basis, or more frequently, with other disability organizations, BHDDH officials, and Arc leaders in Washington.

Renaud, meanwhile, is reviving a mentorship program for emerging leaders in disability-related fields to lay the groundwork for the kinds of partnerships that will be necessary to open doors in the community for adults with developmental disabilities who are trying to plan their own futures, as required by the consent decree.

For example, disability rights advocates need to enlist the business sector as a whole to support job opportunities mandated by the consent decree for those facing intellectual and developmental challenges, Renaud said.

Called the Rhode Island Facilitator Forum, the new mentorship program had its first online meeting Feb. 12 with about 30 participants, Renaud said. He ran a similar group as part of PAL (Parents And Friends for Alternate Living), an advocacy organization that fell victim to the severe state budget cuts of 2011 that adversely affected those with developmental disabilities and their families across the board.

“I can’t think of a better time to bring this back together,” Renaud said. In the months ahead, the program will work with the Rhode Island Developmental Disabilities Council, the Sherlock Center for Disabilities at Rhode Island College, and experts from outside the state to focus on ways to create a welcoming community for those with developmental disabilities, Renaud said.

The Arc in Rhode Island had been dormant since 2008, the twilight of a forceful movement in which the state became the first in the nation to deinstitutionalize people with developmental disabilities.

By 2014, with Rhode Island ranked at the bottom of states for its support of people with developmental disabilities, community leaders begun approaching The Arc of the United States to help revive the organization and its role as advocate. Scocchi opened an office in North Kingstown on a part-time basis in 2019 and went fulltime a year later.

The Arc of the United States works with the Rhode Island chapter as a full-fledged affiliate of the national organization, an approach CEO Berns said is intended to buttress it against adversity long term. With the national organization handling operations, including the website and financing, the four-person staff led by Scocchi and Renaud can focus on advocacy, education, and support.

Berns said the same approach has been used in reviving statewide chapters in Arizona, Wisconsin, and Georgia, as well as the District of Columbia, where the national headquarters is located.

“We’re pleased in how it has played out in all four states,” Berns said.

“In a relatively short period of time, we’ve gone from The Arc having faded out of view in all those states,” he said, “to re-establishing a presence for education and advocacy for those with developmental disabilities.”

The biggest challenge in all four states is for the chapters to become financially self-supporting by attracting public and private funding from government agencies, business and foundations within their jurisdictions, he said.

“We are making progress in that area,” he said, although he did not offer specifics. Berns indicated that if the affiliate model is successful, it could be used in the 10 states where The Arc does not have a state chapter or office.

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.”