Judge Hails RI DD Progress But Calls For Critical Fixes

By Gina Macris 

For the first time since Rhode Island agreed a decade ago to correct civil rights violations affecting adults with developmental disabilities, people now routinely tell Court Monitor A. Anthony Antosh that their lives are better now than they were last year.

That’s a sign of success, said Chief Judge John J. McConnell, Jr. of the U.S. District Court in Rhode Island during a virtual hearing June 13 on the progress of a 2014 consent decree to reform past practices, such as restricting the work of people with disabilities to sheltered workshops.

Judge McConnell File Photo

Judge McConnell praised the “tremendous work” by the General Assembly and the state’s executive branch to dramatically increase funding for developmental disabilities, along with the roll-out of a community-facing system of services that went into effect July 1 of 2023.

At the same time, Judge McConnell said there are still some critical elements of the new system that must come into place for the state to fully implement the consent decree by the 2026 deadline, framing his compliments as “incentive to move forward, not to relax.”

Indeed, Judge McConnell plans to pick up the pace of his involvement in the short term. He gave lawyers for the state and the DOJ until July 12 to file plans for clearing the bottlenecks in the new system. Another court hearing is anticipated in August.

Antosh - file photo

Antosh, the monitor whom Judge McConnell appointed to track the progress of the reform effort, said in a recent report that he questions whether the state will be able to roll out high quality facilitation in time to meet the deadline for full implementation of the consent decree.

In looking at the positive steps the state has made, Judge McConnell contrasted the current status of the state’s efforts with the difficult period that followed signing of the consent agreement between the state and federal governments in 2014.

There were “years where the focus was lost and the state’s commitment was not obvious” for making constitutionally required changes to the service system, Judge McConnell said.

Among the progressive changes are increased community activity. About 84 percent of adults with developmental disabilities spend an average of nearly 16 hours a week participating in community activities, according to the most recent survey conducted by the Sherlock Center for Disabilities at Rhode Island College.

Transition Services Have Achieved Goals

For young people graduating from high school, coordination has improved between the local school districts, the state Department of Education and adult services, Antosh said.

The number of work experiences for high school students has increased and four of 14 who graduated in the last year went into paid employment, he said in a report. Antosh said the services that help young people make the transition to adulthood meet the criteria of the consent decree.

Although a workforce shortage among caregivers continues as part of a national phenomenon, the hike in wages for caregivers implemented last July means that Rhode Island has the lowest turnover rate in the nation in the field of direct care - at least in developmental disabilities, Antosh said. (Private-sector direct care workers in developmental disabilities make more than $22 an hour, on average. Beginning July 1, significant pay hikes will extend to other types of workers in community-based human services. Related state budget article here.)

Key Problems Remain

The remaining roadblocks to a fully realized program for people with developmental disabilities include:

• a lack of independent facilitators working with individuals to navigate the system

• an assessment process that does not yet capture all of a person’s needs

• new bureaucratic hurdles that prevent individuals from getting money from a new category of “flexible funding,” or “add-on” services.

The monitor’s biggest concern is that the state does not have independent facilitators in place to guide individuals through a new three-step assessment process and help them secure the necessary funding for a purposeful program of services.

These trained facilitators are critical in bringing all the pieces of a service system together in an individualized way to improve the lives of people with developmental disabilities, the monitor has said.

The state has budgeted nearly $2 million to hire 18 social workers to serve as facilitators in the next fiscal year, but the Director of the Division of Developmental Disabilities (DDD), Kevin Savage, said only two of them have begun working, as supervisors.

He said he shares “some of the monitor’s trepidation” about the facilitators. “The question is, are they going to be the right people,” Savage said. The facilitators will be funded through the Executive Office of Health and Human Services, not DDD.

The new three-step assessment process is not widely in place, Antosh said, and even when it is used, individuals do not understand how the more comprehensive sequence of questions and interviews is related to individual funding.

To fully comply with the consent decree, the state must get McConnell’s approval on the mathematical formula, or algorithm, that is used to translate needs for support services into individual budgets, according to one of Antosh’s recent reports.

The budgets must not serve to limit spending but to meet an individual’s needs and preferences, Antosh has emphasized.

When the new rate system and administrative structure was introduced last year, state officials said the more accurate assessment process would lead to a reduction in appeals of funding decisions. But the appeals continue.

The amount of money awarded on appeal is expected to be about $22 million in the current fiscal year, according to the May Caseload Estimating Conference. That projection is about $2,246,000 less than the last fiscal year. Last year’s $24.2 million was the highest awarded on appeal since 2015, when the amount reached $28 million, according to an email earlier this year from a spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

As it is, participants have a difficult time accessing so-called “flex funding”, or add-on services, particularly employment-related supports, according to Antosh and Asst. U.S. Attorney Amy Romero, who represented the Justice Department. Romero said she knows former sheltered workshop employees who still haven’t seen the benefits of the consent decree in their lives, years after the workshops themselves have been shut down.

In May, the state reported that 348 persons had obtained add-on employment support, Antosh said, far below his expectations. The overall developmental disabilities caseload is about 4,300 people.

Individuals and families who direct their own services and have no links to provider agencies are at a heightened disadvantage in trying to get employment-related supports, Antosh and Romero said. About a quarter of the developmental disabilities caseload, or about 1,000 people, are in the “self-directed” category.

Antosh said individuals must not be forced to choose between between community activities and employment-related supports.

The monitor’s reports to the court give additional detail on clashes between the court’s intentions and the state’s interpretation of portions of the new service system.

The court intended that job coaching and job retention should be decided according to the needs of the individual, but those receiving services and their caregivers are being told there are time limits to these services, he said.

In March, Antosh wrote to the court that “the amount of hours of job coaching or job retention needed is unique to each individual.”

“This is an individual program decision, not a budgetary decision.” Antosh wrote in bold type in a report submitted in March.

The under-utilization of services is reflected in current spending, which is running about 17 percent under the original projections, said Brian Daniels, Director of the state Office of Management and Budget during the hearing before McConnell.

In reports to the court in recent months, Antosh said providers must file a new purchase order every time an add-on service occurs.

That means every time a participant goes to the gym with a caregiver, or goes to work with a job coach, a new purchase order must be filed for the transportation and the service of the caregiver.

And providers say that group home residents who stay home for whatever reason, including an inability to access add-on services, are funded at a lower annual residential rate now than they received a year ago. Even though their needs have not changed, they may have fewer staff at home. Residential services are not addressed by the consent decree.

Antosh, meanwhile, says he wants the state to simplify the bureaucracy around billing and reimbursements, echoing the complaint he had about the “administrative barriers” of the old system.

In addition, Antosh has said providers must be allowed to bill retroactively to July 1 of last year for “professional services,” which includes nursing, counseling, and some other services, because the state’s new billing system is not yet set up to accept those invoices.

Romero said the Justice Department is “cautiously optimistic” that the state will be able to comply with the consent decree in two years, but the DOJ remains concerned that money budgeted tor enhanced services, particularly employment-related supports, remains unused.

To read the monitor’s report dated June 10, 2024, click here

To read the monitor’s report dated March 25, 2024, click here

RI DD Rate Review: "Refresh" Or "New Analysis" of Project Sustainability?

By Gina Macris

Under court order, Rhode Island is conducting a comprehensive review of how it provides services for adults with developmental disabilities – a study that could have a profound effect on the quality of their lives.

Will the rate review go far enough to realize the goal of a 2014 consent decree – a system of services individualized enough to enable persons with developmental disabilities to become integrated in their communities?

In seeking a consultant for the rate review, the state said it wanted to “shift toward a system of community based supports that promote individual self-determination, choice and control.”

In the end, the state’s evaluation committee selected the firm that offered “more a refresh of a prior model than a new analysis,” Health Management Associates, the parent company of Burns & Associates (HMA-Burns). Under an independent corporate structure more than a decade ago, Burns & Associates helped the state create the problematic reimbursement system now in place, called Project Sustainability.

With completion of the study not expected until December, it’s too early to tell what the final recommendations might look like.

But the selection process suggests the state does not want to stray too far from the structure of Project Sustainability.

One of the three finalists for the rate review, Guidehouse Inc., said as much in its proposal:

“Guidehouse assumes in our proposed approach that BHDDH is not looking for an overhaul of those mechanisms now in place.”

While there have been some changes in Project Sustainability, a federal judge has found that that some of its features amount to administrative barriers to the system of individualized, integrated services required by the 2014 consent decree.

Those barriers, which are expected to be addressed in rate review, include

• A lack of individualized budgeting

• Exhaustive documentation of staff time with each client that detracts from services and is a costly burden for providers

• Staffing ratios that make integration in the community challenging

The state scored five bidders in two categories. Before cost could be considered, a four-member committee conducted a technical evaluation, valued at 70 percent of the overall score, which determined how closely the submissions matched objectives of the state’s request for proposals. Three firms, Guidehouse, Milliman and HMA-Burns exceeded the minimum of 60 points to be considered finalists.

HMA-Burns scored 61 points in the technical evaluation, one more than the 60 points necessary to qualify.

The evaluation committee found the HMA-Burns approach was “clearly defined, and the data approach is strong. However the methodology seems more a refresh of a prior model than a new analysis.” The proposal also “has a continuation of ‘buckets’ for funding rather than a robust approach to individual budgeting,” the committee said.

By comparison, the committee said Guidehouse, the top scorer, had an “engaging proposal, well written, visually engaging with good content.” There was also a “wide range of relevant experience, including recent experience assessing self-direction. (families and individuals designing their own service programs.)”

Among other things, the committee noted that Guidehouse had a “good understanding” of supplementary needs assessments that could lead to more accurate budgeting and reduce appeals that have resulted in the award of millions of dollars annually for supplemental services to which adults with developmental disabilities were entitled.

The cost proposals counted for 30 percent of the overall evaluation, but the committee did not score the originals from the three finalists. The original bids were:

• HMA - $339,680 - 1,516 hours

• Guidehouse - $499,350 - 2,235 hours

• Milliman - $1,203,181 - 4,628 hours

In its evaluation memo, the committee expressed concern that the bids reflected too much of a variation in the effort that would be devoted to the project. It did not interview the vendors, a common practice among public purchasing officials.

Instead, the committee asked for a second round of bids for a project that would encompass 3,000 hours, which the committee said would be sufficient to complete the rate review.

The results:

• HMA- $490,875

• Guidehouse - $670,290

• Milliman - $773,4000

After the second round of bidding, HMA-Burns tied with Guidehouse in the overall scoring but remained the lowest bidder. The final decision was made on the basis of cost.

ISBE MEANS A SMALL BUSINESS ENTERPRISE OWNED BY AT LEAST ONE PERSON WHO IS A WOMAN, MINORITY OR HAS A DISABILITY

During two meetings encompassing the evaluation process, the four-member committee awarded a single score in each category for each proposal through a collective group decision, or consensus, rather than individual scoring.

Individual, independent scoring is recommended as a “best practice” by the Center for Procurement Excellence. The Center is a non-profit organization that promotes education and training of pubic procurement officers and excellence in solicitation practices.

Members of the evaluation committee were Kevin Savage, Director of the Division of Developmental Disabilities; Anne LeClerc, Associate Director of Program Performance at BHDDH; Marylin Gaudreau, Data Analyst II at BHDDH, and Ashley Bultman, Senior Economic & Policy Analyst in the Office of Management and Budget at the Department of Administration.

In the end, the second round of bidding narrowed the range between the lowest and highest cost proposals but their relative positions didn’t change. Nor did the evaluation committee gain any additional information about the differing approaches.

In their cover letters with the second bids, both HMA and Guidehouse reiterated that they believed the work could be done in less than 3,000 hours.

Milliman, on the other hand, stated again that it believed the rate review would take more time. In fact, the letter said that if they were chosen, they would have to revise their technical proposal to conform with 3,000 hours’ work.

Gomes, the DOA spokesman, said purchasing rules gave the committee the choice of scoring proposals individually and interviewing the finalists, but he did not say why the committee did not do so.

Asked whether the evaluation process was designed to steer the project to a refresh of Project Sustainability instead of a new analysis of the system, Gomes said: “The goal of a competitive bid is to retain the best services at the most competitive price.”

“The request for proposals process evaluates both the technical aspects of the proposal and the submitted cost,” he said.

“When there is a wide discrepancy in the cost proposals, the Division of Purchases and agency initiating the procurement will provide an estimated level of effort (i.e. number of hours needed to complete the scope of work) and ask the respondents to submit a best-and-final offer.”

He said a “best and final offer process” is described in state Rules and Regulations 220-RICR-30-00-6(D) and state law R.I. Gen. Laws § 37-2-20(b) read in conjunction with state law R.I. Gen. Laws § 37-2-19(d) and (e).

RI DD Employment Chief To Join AccessPoint RI

By Gina Macris

Tracey Cunningham, a key figure in Rhode Island’s employment efforts for adults with developmental disabilities, will leave state service to become head AccessPoint RI, a private non-profit provider of services to children and adults with intellectual and developmental (IDD) challenges.

pHOTO ribhddh

She will succeed longtime CEO Tom Kane on May 2, according to an open letter on the agency’s website from the chairwoman of the AccessPoint Board of Directors.

Cunningham’s departure from the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) comes at a critical time in the implementation of a 2014 civil rights consent decree, which emphasizes “employment first” for adults with developmental disabilities.

With a 2024 deadline looming for full implementation, Rhode Island faces a severe shortage of the workers needed to meet the employment goals spelled out in the consent decree. To reach full compliance, the U.S. District Court judge overseeing the consent decree has ordered the state to overhaul the entire service system for adults with intellectual and developmental disabilities.

Cunningham’s boss hinted earlier this year that she might be leaving BHDDH.

At a virtual public forum Feb. 9, Kevin Savage, Director of the Division of Developmental Disabilities, said Cunningham would be “leading the charge” in implementing any new supported employment program in the next fiscal year “if Tracey stays with us, and puts up with us longer.”

Savage was responding to a viewer’s question about the future of supported employment services at BHDDH. The third version of a Person Centered Supported Employment Performance Program (PCSEPP) expires June 30.

Savage said that program probably will not be renewed but funding for supported employment services will continue.

Last week, a BHDDH spokesman said of Cunningham: “We greatly appreciate her work to improve employment options for adults with intellectual and/or developmental disabilities. She will be missed, and we wish her the best in her new position.”

Cunningham has served as Associate Director for Employment Services in the Division of Developmental Disabilities since July 2016, according to her LinkedIn page. The post was created in response to the demands of the consent decree.

Elissa O’Brien, chairwoman of the AccessPoint Board, said Cunningham has more than 30 years’ experience in the field of intellectual and developmental disabilities, as well as two masters’ degrees, one in rehabilitation counseling and the other in strategic management and innovation.

AccessPoint has “lots to be thankful for” as Cunningham takes the reins from Kane, O’Brien said. “Under his leadership, the organization has grown and now services close to 1,000 children and adults annually. We are forever grateful to Tom for his hard work and dedication to our organization and to individuals living with IDD,” she said.

With April 9 marking the start of the eighth year of consent decree implementation, BHDDH could not say who might succeed Cunningham or describe specific plans for supported employment services in the next fiscal year, just three months away. A spokesman said only that “BHDDH will work with the stakeholder community to determine what that future programming will look like.”

RI Dodges Contempt With DD Action Plan

By Gina Macris

The Chief Judge of the U.S. District Court welcomed Rhode Island’s action plan to turn around the lives of adults with developmental disabilities, saying in a hearing Oct. 20 that the state has taken “historic and comprehensive” measures to set it on a path to comply with a 2014 civil rights consent decree.

Judge John J. McConnell, Jr. (left) approved the plan, which commits at $50 million in the next few years to stabilize and expand a skilled workforce and promises a structural overhaul of the way services are delivered and providers are paid, according to summaries provided by a lawyer for the state and an independent court monitor.

“This a major step in improving the lives” of adults with developmental disabilities, McConnell said in the hearing, which was streamed remotely via the Internet.

McConnell said that in his 30 years as a lawyer and ten years on the bench, he’s “never seen the state move as quickly, effectively and positively.”

“Make no mistake about it. Moving that mountain was a mammoth undertaking,” McConnell said.

“You have my thanks,” he said, singling out State Sen. Louis DiPalma, D-Middletown, and Kevin Savage, Director of the Division of Developmental Disabilities, for their roles in negotiating the action plan.

Without the action plan, the state could have faced fines of up to $1.5 million a month for contempt of court for continued violations of the consent decree.

The ultimate goal is the systemic restructuring of the system so that those with intellectual and developmental disabilities can live the lives they want in their communities, consistent with the Olmstead decision of the U.S. Supreme Court, McConnell said. The Olmstead decision re-affirmed the Integration Mandate of the Americans With Disabilities Act.

Making a real difference in the lives of those protected by the consent decree “will be another heavy lift,” the judge said. “That’s a long-winded way of saying, good job; there’s a lot of work ahead of you.”

Both the monitor, A. Anthony Antosh, and a lawyer for the U.S. Department of Justice (DOJ), said they will be watching very closely to measure the real-life impact of the action plan on life circumstances of individual service recipients.

Victoria Thomas, the DOJ lawyer, said she and her colleagues in the civil rights division are “cautiously optimistic” that the action plan will achieve the goals of the consent decree by the time it is set to expire in 2024.

“Recent comments indicate that there are many people in Rhode Island that are not getting what they need, want, or are entitled to get” under the law, Thomas said.

Those eligible for services say “they want to be working,” Thomas said.

Families who “rely on day services to function” are essentially trapped,” she said. “They can’t go to work and in some cases can’t leave their homes.”

To focus on the state’s progress, the DOJ and the monitor will review data every 90 days to determine what services eligible persons receive and their duration, Thomas said.

“Rhode Island businesses are eager to hire, and people with developmental disabilities are eager to work,” she said. “The action plan has multiple strategies to do that,” both on a short-term and long-term basis, Thomas said.

Antosh, the court monitor, said the action plan responds to a years-long drive to stabilize and expand the private provider workforce which the state relies on to bring it into compliance with the consent decree, and more recently, a series of court orders spelling out what that effort should look like.

The one that sent ripples through the State House said the state wages must hit $20 an hour by 2024. The action plan says the state will deliver on that pay hike, along with an interim raise, from $15.75 to $18 an hour effective July 1, 2022.

McConnell said “the court’s role is not to tell state what it should do or to run the agency,” a reference with the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH.)

“The court’s role is to ensure compliance with the consent decree. The state, after many years, agreed it has systemically violated the rights of people with developmental disabilities All parties agreed the consent decree would be the vehicle to ensure (those) rights,” McConnell said.

Antosh, meanwhile, said the significant investment in funding higher wages will be accompanied by a shift in strategy for recruiting and retaining new staff to offset the fact that the traditional population interested in caregiving jobs is shrinking.

He said there will be a public-private partnership led by the Department of Labor and Training, the Community College of Rhode Island and other workforce and educational organizations. Together, they will re-define the roles of caregivers and creating targeted training programs, professional credentialling, and career ladders.

“A major strategy is to help people to achieve individual career goals,” Antosh said.

He explained other highlights of the action plan including an upcoming rate review, which he described as “the instrument” for changes that hopefully will create a better-functioning system.

Five consulting firms have bid for the job, and the state has committed to awarding the contract by November 1, with the work to be completed in a year’s time. It will include a reimbursement rate schedule that is indexed to the cost of living, Antosh said.

He said he will push to have a finished report sooner than that. The rate review, or portions of it, should be reflected in the next three budgets, he said.

In another change intended to stabilize financing, the state for the first time will include the developmental disabilities caseload in the semi-annual Caseload Estimating Conference, giving policy makers a realistic projection of developmental disability costs as a basis for budget preparations. The first such Caseload Estimating Conference will be later this month.

There will also be changes that will help increase individuals’ access to services by decreasing administrative burdens on providers. For example, the state plans to eliminate a requirement that staffers document their time individually in 15-minute increments for each person in their care, he said.

Another requirement on its way out is linking reimbursement to pre-determined staffing ratios based on each client’s general level of independence, or lack of it. These staffing ratios do not individualize needs, except for those with the most extreme disabilities, and do not take into account the amount of support necessary to carry out a particular task. Antosh said the complicated billing system will be replaced by two different rates.

The state has said the work on the administrative changes will be done by March 31.

Other innovations in the works will aim at increasing funding for transportation enabling the Rhode Island Public Transit Authority to become a Medicaid provider and by setting aside $2 million for the acquisition of technology for people with intellectual and developmental disabilities, Antosh said.

There are already specialized 400 apps available which aim at improving the quality of life for people with varying intellectual and developmental challenges, he said.

Kate Sherlock, the lawyer representing Antosh in recent negotiations, said the will to “get there” by restructuring the system “has been there all along, among consumers, their families, providers, and state officials, but change has been held back by a lack of funding.”

The action plan is a “significant step in the right direction,” she said. “We’ll be watching carefully to see what happens.”

To read the state’s action plan, click here.

To read the monitor’s memorandum on the action plan, 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.”

Federal Judge Presses RI To Raise DD Worker Wages In Wake Of Severe Shortage Of Services

By Gina Macris

The U.S. District Court has put pressure on the state of Rhode Island to increase the pay of front-line workers who support adults with developmental disabilities in the budget beginning July 1, a year earlier than the disability service agency had planned.

Indeed, two human services officials have recommended that privately-employed front-line workers serving adults with developmental disabilities get $15 an hour – a hike of nearly $2 –in light of a new report that the post-pandemic workforce will fall far short of the number needed for complying with a 2014 civil rights decree.

On April 28, the day after hearing about the worker deficit, Chief Judge John J. McConnell, Jr. issued an order saying the rates must be “reasonably comparable” with those paid in the state’s own group home system and in neighboring Massachusetts and Connecticut.

Massachusetts and Connecticut pay $15.75 and $15.78, respectively.

The state pays its own group home workers an average of $18.46 an hour and sets rates for private providers that allow them to pay front-line employees an average of $13.18 – about five dollars less than the workers make in the state-run group homes, according to figures provided to McConnell.

Moreover, the budget now under consideration by the General Assembly assumes the private sector will absorb more than 100 residents of state-run group homes, without any rate increases.

COVID Exacerbated Worker Shortage

A report submitted to the court April 27 indicated private providers simply don’t have the staff to take on any new clients, let alone meet the demands of the 2014 consent decree by the time it expires in 2024.

The report, compiled by the same consultants the state used for a $1.1 million analysis completed last July, started with the premise that a “stable and skilled workforce is a necessary pre-condition” to implementing changes required by the consent decree.

The consultants concluded that at the end of 2020, the privately-operated system had 1,764 direct care workers, only 62 percent of the 2,845 full time employees it needed to ensure that adults with intellectual and developmental challenges have access to jobs and other activities in their communities, as required by the consent decree. That’s a gap of 1,081 full-time positions.

Currently, the system is staffed at 62 percent of the capacity it would have if all positions were filled, said the consultants. Except for those living in group homes, eligible adults at the end of 2020 generally received less than half the services they got before the pandemic. For those living in family homes, the reduction was calculated at 71 percent, according to the consultants.

The consultants previously worked for the New England States Consortium Systems Organization (NESCSO,) a non-profit regional organization under contract to the Department of Behavioral Healthcare, Developmental Disabilities and Hospital (BHDDH) to analyze the developmental disabilities system top-to-bottom – but provide no recommendations.

The latest report, presented to McConnell April 27, was commissioned by the Community Provider Network of Rhode Island, (CPNRI), a trade association.

CPNRI seeks an hourly rate of $17.50 an hour for front-line workers and proportional increases for supervisory and other personnel. CPNRI’s executive director, Tina Spears, told McConnell during the court hearing that the proposed $15 hourly rate would only address direct care worker pay.

The pay hike would cost nearly $26.9 million and would require legislative approval in the next two months if the change were to take effect in the budget beginning July 1.

Will The Governor Amend Budget Plan?

During the April 27 court hearing, an independent court monitor in the case, A. Anthony Antosh, said he understood a new budget article is to be drafted in early May.

Neither the office of Gov. Dan McKee nor BHDDH have responded to questions about any top-level support of a $26.9 million expenditure to raise worker pay or how they would fund it.

The Director of the Developmental Disabilities, Kevin Savage, was one of the two officials recommending the $15 hourly wage. The other was Kayleigh Fischer, Director of Budget and Finance at the Executive Office of Health and Human Services.

In January, McConnell raised eyebrows at the State House when he ordered the state to raise direct care wages to $20 an hour by 2024.

Both the House and Senate leadership withdrew their representatives from talks organized by the court monitor about consent decree reforms, which must be up and running by July 1, 2023, a year before consent decree is set to expire.

Instead, legislative spokesmen said at the time, the respective chambers would consider reforms in the context of the budget process.

But with only two months left until the start of the next fiscal year, that process has been silent on developmental disability reform.

McConnell Tightens The Reins

The apparent passivity of the legislative process, combined with the fresh data showing that non-compliance with the consent decree has accelerated during the pandemic, apparently prompted McConnell to tighten the reins in his oversight of the case.

He has been adamant that the state cannot meet the integration requirement at the heart of the consent decree without beginning implementation of a three-year plan in the next budget.

The current system, now ten years old, comes with a reimbursement system built on congregate care – a violation of the Integration Mandate of the Americans With Disabilities Act.

While BHDDH officials had said they wanted to tackle structural reforms first, McConnell’s latest order accepts the position of providers that they cannot get their clients into the community unless they first have an adequately paid, stable workforce.

Roughly one in three workers leave within a year, and one in five jobs goes begging, with the majority of supervisory staff frequently filling in for front-line workers, according to various reports.

McConnell’s latest order says the state must continue to meet in person or by teleconference with providers and at least one representative of families who direct their own programs to address the immediate fiscal and administrative issues in several court orders dating back to last July. The judge wants a progress report by the end of May, he said.

The annual state budget typically is finalized in early June for the next fiscal year, but McConnell said state officials should continue talking with providers and at least one family representative to prepare for the following two fiscal cycles leading up to the deadline for full compliance with the consent decree in 2024.

In addition, McConnell’s order said the developmental disability caseload should be part of the twice-yearly process the governor and the General Assembly use to determine public assistance obligations beginning in November of this year. He said he will continue to look at job turnover and vacancy rates, as well as client participation rates, to determine the effect of the wages on the system.

Governor McKee’s budget proposal would have the developmental disability caseload become part of the twice-yearly meeting, the “Caseload Estimating Conference,” in November, 2022.

The caseload and revenue-estimating conferences in May and November are considered critical tools in budget-planning.

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.”

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.

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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

BHDDH has not made any public comment on the report.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The newsletter described the workgroups as follows:

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

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

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

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

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

Federal Judge Orders RI To Re-Invent DD System

By Gina Macris

Judge McConnell

Chief Judge John J. McConnell, Jr. of the U.S. District Court has signaled that if it becomes necessary, he is prepared to order the state of Rhode Island to fund services for adults with developmental disabilities in an amount that complies with a 2014 consent decree that the state agreed to follow.

“I can’t tell you how impressed I am with people who work day in and day out” to support this vulnerable population and “how committed I am that people with developmental disabilities will get the rights guaranteed them under the Constitution,” McConnell said during a July 30 online hearing on the state’s progress in complying with the consent decree.

“I’m prepared to say, ‘Find the money,’ “ McConnell said after hearing from the state Director of Developmental Disabilities, a spokeswoman for providers, and the mother of a 25-year-old man with complex needs who has had no outside supports since the COVID-19 pandemic struck Rhode Island in March.

“Everyone is attempting to follow the requirements” of the consent decree, “but they are stymied by a lack of funds,” McConnell said, summing up the presentations. In addition, they lack funds to deal with the unexpected costs of protecting people during the COVID-19 pandemic, McConnell said.

He said he finds it “frightening” that private service providers, the backbone of the state’s system, are on shaky financial ground. And, McConnell said, “my heart breaks” when he hears of the burdens on families who have a loved one with intellectual or developmental challenges.

A Personal Story

Carol Dorros, M.D. testified about her 25-year-old son, Sidney, who has heart and lung disease, profound deafness, albeit mitigated by a cochlear implant; significant language limitations; a seizure disorder and diabetes. He nevertheless had an active life before the pandemic, volunteering at a soup kitchen, working at a custodial job in a financial services building, and participating in group activities three days a week. He also had a coach who helped him make art for cards sold at a local bookshop and at some craft fairs, his mother said.

Dorros, an internist who has practiced in Rhode Island for 30 years, said she has not been able to work in the last four months. She said she and her husband have been terrified to have Sidney go out in the community or have staff come to the house, because the family doesn’t know what the outsiders’ circles of contact might have been.

Last week, one support person came to the house to work with Sidney for 90 minutes on his art. “We’re looking forward to that person coming back,” she said.

“Really, we are living quite day-to-day.” Dorros said. She has chosen to direct Sidney’s program independent of an agency, but she said it’s “extremely hard to find staff” with the expertise to manage Sidney’s insulin and communication needs. The coronavirus aside, other parents who direct services for their adult children have made similar remarks about the difficulty in finding the appropriate support people. Dorros said she believes the staffing issue comes down to funding.

Referring to state officials who hold the purse strings, McConnell said,” I fear that the right people aren’t on this call.” In the future “we will need someone from the Department of Administration” and any other pertinent executive branch agency, the judge said.

McConnell said he needs to know how much money the developmental disability service system needs to get through the pandemic, and what it will cost to proceed with the goals of the consent decree, which call for individualized services.

“I want the doctor to have confidence in the people providing the service,” the judge said, referring to Dorros, and he said he wants providers to be funded to provide individualized services. Once the funding is figured out, McConnell said, he wants to see the “problem-solvers, not the problem-makers.”

“If we don’t come up with a way to systemically support the providers, then the whole thing will be meaningless,” McConnell said. “If anybody couldn’t tell, I am obsessed with the issue of funding as essential for us to get there,” McConnell said, pointing out that the consent decree requires adequate funding. (No figure is specified.)

Four-Week Deadline

He gave the state until August 30 to lay out the strategy or process for resolving the funding issue and more than a dozen other barriers to compliance with the consent decree, the time line for resolution of each item, and the agency or agencies with primary responsibility for resolving each problem.

The Aug. 30 deadline is but the first of a year-long court-ordered calendar for working out a new system of developmental disability services.

Providers On Shaky Footing

Tina Spears, executive director of the Community Provider Network of Rhode Island (CPNRI), a trade association, said she wanted to emphasize the “unstable nature” of the private agencies that provide services to the adult population with developmental disabilities. Spears represents about two thirds of the three dozen agencies licensed to work with adults with developmental disabilities in Rhode Island.

The day after the court hearing, one of CPNRI’s 23 members, Resources for Human Development, told its clients and their families that it is closing its doors, leaving an estimated 150 persons without services, according to multiple reports. Efforts to reach the director, Rebecca Dimant, were not immediately successful.

The current funding model and administrative rules perpetuate “congregate services and poverty wages for front line workers,” a staffing issue that disproportionately affects women and minorities, Spears said during the July 30 hearing.

COVID-19 has complicated the situation by requiring intensive cleaning protocols, face masks and other personal protective equipment, and social distancing, Spears said. The provider system can’t meet the needs of its consumers with the available resources, she said.

While the incidence of coronavirus in group homes has been low, 11 residents have lost their lives, Spears said. (A spokesman for the Department of Behavioral Healthcare Developmental Disabilities and Hospitals (BHDDH) reports that one of the 11 died of other causes.) Spears said 160 group home residents and 200 staff members have tested positive. About 1180 people with developmental disabilities live in group homes in Rhode Island.

During the past few months, Spears said, providers have been working in close partnership with state officials. Providers have received two months of advance payments during April and May to keep their doors open, as well as a 10 percent temporary rate increase for group home operations and work stabilization funds for front-line employees.

Workers, who make an average of a little more than $13 an hour, temporarily got an additional $3 an hour, Spears said, but it still wasn’t as much as they could get in unemployment benefits.

While the various categories of financial assistance were “very critical and welcome,” Spears said, “they all have stopped and ultimately have not done anything to stabilize the system.”

She said she has been disappointed by a lack of current support from the administration prioritizing developmental disability services for virus infection testing, personal protective equipment and a living wage for workers. In a separate letter to Governor Gina Raimondo dated July 29, Spears has asked for a task force representing the Governor’s office, the court monitor for the consent decree, the state developmental disability service agency, and private service providers to design a “COVID-19 transformation model” over a four-week period.

Spears’ letter also requested

• an increase in reimbursement rates to raise wages to a minimum of $15.00 an hour

• a new funding model that supports individualized services and community inclusion, in compliance the Medicaid Home and Community Based Services Rule (HCBS). (The rule was adopted by Medicaid to follow through on the 1999 Olmstead decision of the U.S. Supreme Court, which reinforces the Integration Mandate of the Americans With Disabilities Act (ADA).

• Priority status for testing and protective equipment for adults with developmental disabilities in congregate care and their staff.

State Agencies Report On Efforts

During the court hearing, Kevin Savage, the acting state Director of Developmental Disabilities, said he agreed that going forward, services must have “different financial supports.” BHDDH has “tremendous value for the providers,” not only CPNRI agencies but the entire community of service providers, Savage said.

BHDDH has sent providers draft rules for reopening and asked for comments from them next week. “The biggest issue is safety for people with developmental disabilities,” he said. “We can’t just re-open programs in a way that we need to shut them down again,” he said, in an apparent allusion to congregate day care centers that were still in operation before the coronavirus reached Rhode Island.

People with developmental disabilities have the same rights, but different needs, he said. Some want to get back to groups, but smaller groups. Some want access from home, Savage said.

Joseph Murphy, a spokesman for the state Office of Rehabilitation Services at the Department of Human Services, told McConnell that the agency has switched to online employment supports when the state closed down in March. “We are open for business, trying to provide services as best we can on a virtual platform” and making sure that bills from providers are paid, he said.

David Sienko of the Rhode Island Department of Education (RIDE) also testified. He said the developmental disability population is part of a larger conversation on re-opening schools. RIDE is responsible for providing transitional services to high school students with developmental disabilities to prepare them to live and work in their communities as adults.

His conversations with special education directors indicate that “pretty much everyone is looking at a hybrid approach” of online and person-to-person instruction, Sienko told the judge. “We know some people need more in-person” teaching, and while that is troubling because of safety considerations, schools still have to address the needs of vulnerable children, Sienko said.

Judge Finalizes Order

The day after the hearing, July 31, McConnell entered an order requiring the state, in collaboration with providers and the community, to address 16 issues identified by the court monitor as fiscal and administrative barriers to compliance with the consent decree.

Antosh, the monitor, said during the hearing that the list of issues reflect “items that have been raised over and over again” for years.

“What we’re looking for is the impetus to get them done,” he said. The list addresses not only the amount of funding for services, but asks for a streamlined application process and addresses a bureaucracy that:

• is designed to link eligibility and funding in a way that translates into the amount of supervision a particular person might need in a congregate setting, as opposed to the individualized services that person needs to accomplish goals.

• limits access to already-approved individual budgets

• Requires documentation of daytime staff time four times in an hour for each client served.

• Forces providers and families to make appeals related to eligibility or funding using an opaque process that does not include a hearing. Even if appeals are successful, the process must be repeated every year.

Read McConnell’s order here. Read the CPNRI letter to Governor Raimondo here.

Hospitals Allegedly Violate RI DOH Visitation Policy For Patients With Disabilities

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

By Gina Macris

Judge McConnell

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

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

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

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

Kevin Savage

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

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

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

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

The BHDDH spokesman later elaborated:

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

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

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

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

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

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

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

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

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

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

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

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

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

McConnell questioned how often people’s service needs change.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

File photos by Anne Peters

Union Raises Strike Possibility At Northern RI DD Provider Over Submarket Wages; No Deadline Set

By Gina Macris

Unionized workers supporting about 250 adults with developmental disabilities have indicated they may strike at Seven Hills Rhode Island over wages that lag significantly below those in neighboring states. No deadline has been set for a walkout.

The possibility of a strike by about 180 members of the United Nurses and Allied Professionals (UNAP) was disclosed in a letter that the management of Seven Hills sent to families Jan. 15. Talks between labor and management continue, according to a source with knowledge of the negotiations.

An official of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) indicated that the union must give a 10-day notice of any walkout.

Kevin Savage, Associate Director for Quality Management, said Jan.18 that “BHDDH is in close contact with Seven Hills administration, who have put together a plan to ensure coverage of necessary services in the event that the union gives them a 10-day notice that a walk out will occur.”

He said BHDDH contracts with Seven Hills to support about 250 persons with developmental disabilities in a variety of residential settings, as well as supported employment services and non-work daytime activities.

The Jan. 15 letter to families, signed by Seven Hills’ vice president, Cliff R. Cabral, said that a work stoppage could force the agency to suspend or reduce “several program offerings.”

“Our day services program will be limited to 24 residential participants,” Cabral said. Seven Hills has 76 residential clients, according to the latest data compiled by the state.

Efforts to reach Cabral or a UNAP spokesperson were not immediately successful.

Average entry-level wages for direct care workers in Rhode Island are $11.36 an hour, according to the most recent figure released by the Community Provider Network of Rhode Island, a trade association representing two thirds of the private providers of developmental disability services in the state.

Governor Gina Raimondo has proposed an incremental raise – estimated by BHDDH at an average of about 44 cents an hour – effective July 1.

In Connecticut, entry-level direct care workers must be paid a minimum of $14.75 houirly. The Connecticut legislature approved the raises last May, even though it had not yet acted on the state budget, to avert a strike that had been planned at that time by the Service Employees’ International Union (SEIU). The wage hikes became effective three weeks ago, on Jan. 1.

SEIU also has negotiated a $15 hourly minimum wage with Massachusetts for direct care workers in that state that went into effect July 1, 2018.

In the letter to families, Cabral said that “Seven Hills Rhode Island stands with our employees and will continue to advocate on their behalf for the living wage they deserve.”

He said Rhode Island’s system of care for adults with developmental disabilities still has not recovered from the General Assembly’s $24 million reduction in services in 2011. (Final figures on actual spending put the total over $26 million.)

Despite repeated and concerted advocacy, “our state representatives continue to place funding for individuals with developmental disabilities low on their priority list,”he said. The General Assembly’s inaction has significantly “compromised the sustainability of the current system,” which, Cabral said, has been weakened by below-market compensation and high staff turnover.

“Organizations such as ours have taken several painful measures throughout the past decade in an effort to ensure our fiscal sustainability, including liquidating assets and significantly reducing our administrative resources,” Cabral wrote.

While it has adhered to the “highest delivery standards possible,” Seven Hills cannot sustain its efforts indefinitely, Cabral said. He called on UNAP to join with management “to more productively direct our collective efforts toward lobbying for a substantial investment in this year’s state budget in order to adequately address the needs of those with developmental disabilities while ensuring a living wage for the remarkable individuals who support them.”

Seven Hills Rhode Island offers a variety of services for children, families and adults, with offices in Cranston and Woonsocket. Services for adults with developmental disabilities are based in Woonsocket, covering northern Rhode Island.

Public Hearings Scheduled Sept. 18 On RI BHDDH Proposed Regulations

By Gina Macris

Long-awaited revisions to regulations governing Rhode Island’s services for adults with developmental disabilities, as well as other functions of the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), are to be discussed in public hearings Tuesday, September 18, at the Arnold Conference Center in Cranston.

In the Division of Developmental Disabilities (DDD), the changes are intended to give providers the flexibility to better tailor services around the unique needs and preferences of each individual, according to Kevin Savage, the Director of Licensing at BHDDH.

On Aug. 21, before the proposed regulations were made public, Savage agreed to describe the purpose of the changes in general terms. He said he would be was prohibited from making any remarks once the public comment period opened. That happened Sept. 6, when the proposed regulations were posted on the Secretary of State’s website. Written comments will be accepted until Oct. 6.

An index with links to the rules proposed for adoption – and those proposed for repeal - can be found here:

On Sept. 18, the hearing schedule will be:

• 11 a.m. Developmental disability regulations

• 1 p.m. Licensing regulations for all entities that operate under the auspices of BHDDH

• 3 p.m. Behavioral healthcare regulations

The regulations are part of a broader context that includes standards of quality which developmental disability service organizations must meet to obtain and keep an operating license.

Until now, the standards of quality have been part of the regulations, which carry the force of law. But Savage, the BHDDH licensing director, has said that arrangement stifles the flexibility of providers to tailor services to the needs of individuals. Providers have also complained of lack of flexibility, particularly in light of demands of the 2014 consent decree which mandates integrated day services.

In the proposal, the standards of quality, or “certification standards” would no longer be part of the regulations, but instead serve as guidance about what organizations must do to become licensed or have their licenses renewed.

Here are links to the quality, or “certification” standards.

Day Services Employment Services Residential Services Shared Living Arrangements

• Long-awaited revisions to regulations governing Rhode Island’s services for adults with developmental disabilities, as well as other functions of the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), are to be discussed in public hearings Tuesday, September 18, at the Arnold Conference Center in Cranston.

In the Division of Developmental Disabilities (DDD), the changes are intended to give providers the flexibility to better tailor services around the unique needs and preferences of each individual, according to Kevin Savage, the Director of Licensing at BHDDH.

On Aug. 21, before the proposed regulations were made public, Savage agreed to describe the purpose of the changes in general terms. He said he would be was prohibited from making any remarks once the public comment period opened.  That happened Sept. 6, when the proposed regulations were posted on the Secretary of State’s website. Written comments will be accepted until Oct. 6.  

An index with links to the rules proposed for adoption – and those proposed for repeal - can be found here:  https://rules.sos.ri.gov/promulgations/organization/212

On Sept. 18, the hearing schedule will be:

·         11 a.m.   Developmental disability regulations

·         1 p.m.      Licensing regulations for all entities that operate under the auspices of BHDDH

·         3 p.m.    Behavioral healthcare regulations

The regulations are part of a broader context that includes standards of quality which developmental disability service organizations must meet to obtain and keep an operating license.

Until now, the standards of quality have been part of the regulations, which carry the force of law. But Savage, the BHDDH licensing director, has said that arrangement stifles the flexibility of providers to tailor services to the needs of individuals.

In the proposal, the standards of quality, or “certification standards” would no longer be part of the regulations, but instead serve as guidance about what organizations must do to become licensed or have their licenses renewed. (links to standards.)

xxxxxxThe regulations are part of a broader context that includes standards of quality which developmental disability service organizations must meet to obtain and keep an operating license.                                                     

Until now, the standards of quality have been part of the regulations, which carry the force of law. But Savage, the BHDDH licensing director, has said that arrangement stifles the flexibility of providers to tailor services to the needs of individuals.  

In the proposal, the standards of quality, or “certification standards” would no longer be part of the regulations, but instead serve as guidance about what organizations must do to become licensed or have their licenses renewed.

Long-awaited revisions to regulations governing Rhode Island’s services for adults with developmental disabilities, as well as those for behavioral healthcare, substance abuse prevention and treatment and state hospitals, have been posted by the Secretary of State’s office and are to be discussed in public hearings Tuesday, September 18, at the Arnold Conference Center in Cranston.

A link to new and old regulations is in the “What’s New” section of the website of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals.

The first hearing, on rules and regulations for developmental disability service providers, is scheduled at 11 a.m. At 1 p.m., the discussion will shift to the licensing of all service providers and facilities that are funded by BHDDH. And at 3 p.m., there will be a hearing for rules and regulations governing behavioral healthcare organizations.

Written public comment will be accepted until Oct. 6.

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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Future of RI Fedcap Agency Still Unclear; State Continues To Collect Evidence For Final Decision

By Gina Macris

With less than two months remaining before the state of Rhode Island decides whether to shut down a subsidiary of the New York-based Fedcap Rehabilitation Services, licensing officials at the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) are still collecting evidence that will have a bearing on the state’s decision.

The performance of Community Work Services (CWS), which also has come under criticism by federal officials, is expected to figure in a U.S. District Court hearing Nov. 30 about a 2013 settlement of disability rights violations involving CWS and its predecessor, the now-defunct sheltered workshop Training Through Placement (TTP.)

In an interview Nov. 3, the director of licensing for BHDDH, Kevin Savage, said that the probationary status of CWS, in effect for nearly a year, “has not been resolved.”  Licensing regulations place a 12-month limit on probation.

 A federal court monitor said during a court hearing in May that the number of former TTP clients who had found jobs had been “essentially flat” for the previous four years. A lawyer for the U.S. Department of Justice also cited a lack of progress that was evident during a site visit earlier in the spring.  About half of individuals protected by the 2013 agreement – 62 individuals at last count – are currently served by CWS.

In an interview Nov. 3, Savage, the BHDDH licensing administrator, said that the most recent "monitor’s report is primarily about the programming, and the programming issue is not resolved.

“We’re reading the monitor’s reports and our own reports,” Savage said, and “we are not satisfied with the program resolution.”

Savage said that BHDDH will continue – “and I want the word 'continue' to be clear” – to look at “every aspect of what CWS does, including payment structures, including respite (care), and including how they work with families and participants – everything.”

Savage also said, “I think it’s okay to say we are accumulating evidence. They (CWS) know that, and I think it’s okay for the public to know that. The evidence speaks to whether they should be shut down, or whether they should not be shut down. Evidence does that.”

“Our goal, and our only goal, is to ensure that participants have the best service available that is possible,”  he said. “We’ve communicated that clearly to the providers we work with and the families we work with. Our job is not to protect businesses. Our job is to protect participants.”

CWS has been on probation since the beginning of 2017. BHDDH licensing officials shut down its operation at the former TTP building at 20 Marblehead Ave., North Providence, in March because of unsafe conditions - a problem separate from programmatic concerns - but the agency re-opened with state permission in different quarters a few days later.

In this and any other probationary case, Savage said, the public has the right to know the “final agency action.”  Adverse decisions may be appealed by the agencies in question, he said.

The performance of CWS is entwined in the state’s accountability to the federal court for satisfying the demands of the 2013 settlement agreement that protect special education students at Mount Pleasant High School, including the former Birth Academy, and former clients of TTP - a total of 126 individuals.

A broader agreement between the state and the DOJ signed in 2014 covers all adults with developmental disabilities who have at one time been segregated in either sheltered workshops or day centers - more than 3,000 people. .

In connection with the so-called  "Interim Settlement Agreement" of 2013, the federal court monitor, Charles Moseley, said in a report to the court in September that the state has missed two deadlines in an order issued by Judge John J. McConnell, Jr: They are

•  A July 30 deadline for improving the quality of individual career development plans among CWS clients.
• A June 30 deadline for verifying the accuracy of data reported by CWS on its clients’ progress.

So-called “career development plans” describe how current services and plans for the near future fold into blueprints for life-long work goals that are supposed to take into account both the needs and preferences of individuals with developmental disabilities.

The November 30 hearing is listed on the U.S. District  Court calendar in connection with the statewide 2014 consent decree, but the state's interim Consent Decree Coordinator, Brian Gosselin, said recently at a public forum on developmental disability issues that the session will deal instead with the more narrow Interim Settlement Agreement of 2013, which was last heard in late May. A separate hearing on the status of the statewide consent decree is expected to be scheduled for the end of January, six months after its most recent hearing in late July.