New Relief Funding Welcome, But Forum Says Caregivers Still Undervalued

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The consequences of the workforce shortage have become dire:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

From l to R: Steve Brown, exec director of RI ACLU; James Rollins, ACLU Cooperating Attorney and a partner at Nelson, Mullins, Riley & Scarborough, LLP in Boston; Amy Fettig of the ACLU Prison Project; Morna Murray, exec.director of Disability R…

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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


RI “Not Far” From Institutional System Of DD Services, Antosh Tells Legislative Commission

A. Anthony Antosh

A. Anthony Antosh

By Gina Macris

Other than moving people out of institutional living with the closing of the Ladd School in 1994, Rhode Island hasn’t made life appreciably better for adults with developmental disabilities, according to state’s most prominent academic in the field.

A. Anthony Antosh, director of the Sherlock Center on Disabilities at Rhode Island College, said that every week he gets calls from parents who say how “complicated it has gotten” to deal with state-funded services and “how unstable the system is.”

“Our system is not institutional, but it’s not far from that,” Antosh said. He has been active as an educator and researcher in the field of developmental disabilities since the 1970s and was a plaintiff in a lawsuit that ultimately closed the Ladd School.

If the state transfers control of its services – even partially -- to the people who are served, “you begin to change what the system looks like,” he said. Individuals will become “more responsible for themselves.”

Antosh made the comments May 22 as a member of the Project Sustainability Commission, a special legislative commission studying the current state of developmental disability services. Antosh and other commissioners outlined their reform suggestions at the session.

He zeroed in on a requirement now in place that sets out ratios for staffing according to the degree to which a person is perceived to be disabled – a “naive notion” in his view. The ratios allow one-to-one or small group staffing only for the most challenged individuals and were designed for day care facilities or sheltered workshops.

The funding rule remains in place even though the state in April entered the sixth year of a ten-year agreement with the U.S. Department of Justice requiring it to change to an integrated, community-based system of care. The last sheltered workshop in Rhode Island closed last year.

Antosh said an alternative structure could be a community support team responsible for a certain number of people. The team would figure out how to arrange its time to meet the individual needs of its clients in the community.

DD Council Weighs In

Kevin Nerney, executive director of the Rhode Island Developmental Disabilities Council, also said that he wanted a system “driven by the person and the family.”

There is much talk about “person-centered planning,” he said, but “sometimes, the person is at the center and the other people are doing the planning.”

Nerney recommended that the person receiving services and the family take the lead in drawing up a plan for life in the community. They would be guided by an independent facilitator, not by someone who works for the state funding agency or a private service provider.

The individual and the family would have control over the budget assigned to them and would be able to hire whom they choose to provide paid supports.

Until recently, Nerney said, individuals and families who direct their own services were allowed to use the money allotted to them only to pay for support workers.

Those who choose to receive services from an agency should at least know how much money goes into each category of support, Nerney said.

Antosh, meanwhile, said that funding should be organized by function so that individuals and families have a clearer idea of its purpose.

The notion that plan-making and case management should be separated from the funding agency and the service provider is already embedded in federal Medicaid rules under the title of “conflict free case management.”

“Health Home” Merits Debated

The state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) wants to set up a Medicaid-funded “Health Home” as an independent planning and case management entity for persons with developmental disabilities.

But some commission members have wondered aloud whether a Health Home would be just another layer of bureaucracy.

And Nerney said most people don’t even like the term “conflict-free case management.”

Antosh agreed that “conflict-free case management” should be made simple. The state should have a list of trained independent facilitators, or “navigators,” as he referred to them, to help individuals and families develop plans and mediate any differences among those contributing to an individual plan.

Individuals and families should have a choice of managing their own services, signing up with an agency, or designing a customized combination of self-directed supports and agency-managed services, he said.

Tom Kane, Left, With Antosh

Tom Kane, Left, With Antosh

Tom Kane, who represented a service provider’s perspective, agreed that the people should be in control, with the services following their needs.

To lay the groundwork for real choice, the system should help adults with developmental disabilities “discover their options,” and providers should follow their lead in delivering services, said Kane, CEO of AccessPoint RI.

Kane recommended a concerted statewide marketing campaign aimed at employers that promotes adults with developmental disabilities as an enthusiastic and reliable workforce.

Several other recommendations from Kane echoed recurring issues among members of the commission including:

  • A need for funding that reflects the real costs of services, as well as salaries that will attract and retain talented employees. Recommendations that arise from the review of the funding model and rates that is now underway should be presented to the General Assembly “without edit,” Kane said, and should be used as the basis of funding a new system. He noted that the last review came up with recommendations which the legislature never used.

  • Concerns about a lack of housing options

  • A need for consumers’ access to technology to help them achieve the greatest independence possible.

A Call For A More Stable Funding Cycle

All the commission members, except Antosh, favor annualized budgets for individuals. Antosh said arrangements should be made in two-year increments for funding and services. He also said that there should be a single streamlined application process, no matter the source of the funding, which may come from BHDDH, the Office of Rehabilitative Services, or the Department of Labor and Training.

Families of youngsters deemed eligible for adult services while they are still in high school should also get a budget for exploratory activities, because they don’t know what choices are possible until they experience various options, he said.

The state now determines funding levels annually on paper but reserves the right to change the amount actually released for spending every three months – on a quarterly basis. Families and providers agree that the quarterly allocation - the only one like it in the nation – is a major impediment to the systematic planning necessary for a stable system of supports.

Kane provided some history on the quarterly allocations:

In 2010, he said, payments to private service providers ran over budget and the state told them their reimbursements would be cut for two months – one month retroactively – to make up the difference.

Some providers sued, Kane said, arguing that the state was still obliged to fulfill its contract with them. The providers won, but the next year, in 2011, BHDDH introduced quarterly allocations along with Project Sustainability, the fee-for-service system that significantly reduced reimbursements and is at the center of the commission’s deliberations.

Mental Health Services Lag

The issue of mental health received considerable attention, with Nerney recommending that the system develop and implement a variety of strategies to prevent crises or resolve them once they occur.

Nerney supported the idea of a mobile crisis unit that he said was suggested by Gloria Quinn, Executive Director of West Bay Residential Services, at the previous commission meeting May 6.

Quinn recommended convening a group to explore successful practices in supporting those with complex mental health and behavioral needs in the community, minimizing the need for excessive psychiatric hospitalization.

Rebecca Boss, the BHDDH executive director, and Kerri Zanchi, the Director of the Division of Developmental Disabilities, both indicated they are aware of a need for greater support and intervention in the area of behavioral health for persons with developmental disabilities.

“We don’t have a good handle on the needs of families in crisis,” Zanchi said.

The assessment tool that BHDDH uses to determine funding levels, the Supports Intensity Scale (SIS), garnered a new round of criticism, despite efforts in 2016 to reframe the questions it asks to better identify support needs and the re-training of all the social workers who conduct the highly scripted interviews..

L To R, Kerri ZanCHI, Brian Gosselin, Acting Consent Decree Coordinator; Christopher Semonelli, Peter Quattromani. All Are Commission Members

L To R, Kerri ZanCHI, Brian Gosselin, Acting Consent Decree Coordinator; Christopher Semonelli, Peter Quattromani. All Are Commission Members

Critic Says Assessment Method Is “Demeaning”

Peter Quattromani, executive director of United Cerebral Palsy RI and spokesman for the Providers Council, said the state should return to using the Personal Capacity Inventory to identify funding needs because it reflects a more collaborative approach than the SIS.

Quattromani said he sat in on several SIS interviews and found the SIS to be a “very demeaning experience” with “very intrusive questions.” In some cases the interview varied, depending on who was asking the questions, he said.

Antosh said when parents experience the SIS for the first time, “they are absolutely horrified by it.”

He suggested that when the SIS was first piloted, it was not intrusive. It was “a conversation”, albeit a lengthy one, lasting for or five hours, Antosh said. Afterward the responses were correlated with funding needs.

Antosh said the SIS was designed to help professionals develop support plans, not as a funding tool, even though Rhode Island and other states use it that way.

Antosh said he would recommend that Rhode Island design its own assessment tool, not necessarily eliminating the SIS but using multiple factors to determine funding, including an exploration of behavioral health issues and other areas not covered in the SIS.

Heather Mincey, assistant director of the Division of Developmental Disabilities, said not all the comments abut the SIS process she has received from families have been negative, with some parents saying it “wasn’t all that bad.”

The May 22 meeting concluded individual members’ presentations on recommendations for change, which will be reviewed and consolidated along common themes and incorporated into a plan for moving forward, said the Commission chairman, Sen. Louis DiPalma, D-Middletown.

He said he anticipated a five-year process for implementation, with the aim of making Rhode Island achieve top national ranking among state systems of developmental disability services.

In the meantime, DiPalma said that he next commission meeting, on June 18, will feature remarks by the state Director of Labor and Training, Scott R. Jensen; and the CEO of the Rhode Island Public Transit Authority, Scott Avedesian Employment and transportation are two topics that have sparked a lot of complaints, DiPalma said. He said he expects the commission to continue meeting into July.

RI DD System Needs Stable Funding For Quality Services and Productive Lives - Commission

By Gina Macris

A successful model for funding Rhode Island’s developmental disability services would be more complex than simply increasing workers’ wages, members of a special legislative commission agreed at a meeting May 6.

Kelly Donovan, a commission member who herself receives services, said the work of the support person is “not a job; it’s a commitment.“

In a high-quality system of services, Donovan said, direct support professionals and the people they serve have a relationship. They develop strong bonds.

The discussion nevertheless returned repeatedly to the lack of funding that permeates the system, with rules that commission members say make it rigid and unresponsive to those needing services.

Peter Quattromani, CEO of United Cerebral Palsy of Rhode Island, said agencies that ask their employees to “ commit” to the persons they serve also require them to commit themselves to “a life of poverty” because employers, dependent on state funding, can’t pay salaries commensurate with professional work.

As a result, Quattromani said, the agencies are hiring “very temporary employees.”

“We don’t appreciate what it takes on the part of the individual to turn their life over to a staff person,” Quattromani said. Every time there’s turnover, there’s a new intrusion in that person’s life, he said.

The CEO of West Bay Residential Services, Gloria Quinn, said “I can think of examples when people go along with people and don’t know them. It gets complicated to do the right thing at the right time.”

But West Bay Residential has an annual staff turnover rate of 34 percent and a job vacancy rate of 15 percent, said Quinn, who recommended a system that is adequately funding, “including appropriate compensation for a well-trained workforce.”

At the same time, she said, there are employees who are doing an “incredibly important and skillful job” even without the compensation they deserve.

Sen. Louis DiPalma, D-Middletown, the commission chairman, said there is a great disparity in pay in two parallel systems of services.

“We do value the profession” of supporting adults with developmental disabilities, he said, as long as it is the state-operated network of group homes and facilities called RICLAS, short for Rhode Island Community Living and Supports. But private providers, who perform the same direct support work, are not valued, DiPalma said, referring to the state’s chronic underfunding of these agencies.

He said he never saw the situation quite that way until Tom Kane, CEO of AccessPoint RI, framed it in those terms during a recent budget hearing before the Senate Finance Committee.

RICLAS workers start at about $18 an hour, while entry-level workers in the private system average about $11.40 an hour. On an annual basis, the starting salary at RICLAS is $37,291, according to a spokeswoman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH). As state employees, RICLAS workers also get a full package of benefits.

DiPalma said that when the current fee-for-service reimbursement model was enacted by the General Assembly in 2011, the “right questions weren’t asked. We can’t let that happen again.”

He said he firmly believes that today, all legislators would say they value the work done in supporting adults with developmental disabilities, but “the critical thing is ‘how do we get there’? “ He alluded to a reimbursement model in which wages reflect the value of the work.

In Kelly Donovan’s vision of the future, adults with developmental disabilities will receive training and support in making their own decisions in an informed manner. And support persons will respect those decisions, she said.

Kate Sherlock, a commission member and lawyer with the Rhode Island Disability Law Center, concurred.

For a long time, the role of the staff person has been to “speak up for people,” she said. Instead, staff should facilitate decisions made by clients.

But clients “do not have the real opportunity to decide what they want, because there are not enough options,” Sherlock said. Decisions should not be “either-or,” she said. “It shouldn’t be ‘do you want chocolate or vanilla ice cream.’ “

“People want to live with people they choose. They want a job they like and they want to make a decent amount of money,” Sherlock said.

Enabling clients to make meaningful decisions about belonging to their communities and engaging in activities they want, as well as giving them the opportunity to eat healthy foods and be active and fit will at the same time elevate the staff role into a position that can have greater impact and be more desirable – even fun, Sherlock said.

The Disability Law Center supports a bill that would give legal standing to adults who support those who need assistance in decision-making, Sherlock said, but the measure is encountering difficulties in the Senate. DiPalma said he would look into it.

Commission members agree that Rhode Island needs to abandon its fee-for-service reimbursement system in favor of one that gives clients an annual budget with flexibility to spend it on what they want and need to enable them to live regular lives in their communities, in accordance with a 2014 consent decree and federal Medicaid rules reinforcing the Integration mandate of the Americans With Disabilities Act (ADA).

Not only is the current system under-funded but it is saddled by rules that make it too restrictive, they say.

Among the needs discussed May 6 are funding for:

  • training and career paths for staffers

  • Technology, such as smart phones and other devices and software, that can help clients become more independent from staff.

  • ·Easier access to transportation, which might include Uber and Lyft options to lessen clients’ dependence on staff time, which can be better used providing other types of supports

  • Better access to affordable housing

  • More intensive community-based mental health services that can prevent psychiatric hospitalizations.

In addition, the developmental disabilities caseload must be counted in a way that better informs budget makers, according to Quinn, the CEO of West Bay Residential Services.

All the recommendations which members have presented through May 6 can be found here .

The next meeting will be May 22, when commission members are expected to continue presenting their recommendations.