$2.5 M Unused For Lack of RI DD Jobs Program

CVS Trainee - File Photo

By Gina Macris

This article was updated Sept. 10.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Job Placements Fall Short

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

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

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

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

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

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

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

Rate Review To Finish Nov. 1

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

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

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

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

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

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

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

Administrative Barriers To Integration

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

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

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

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

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

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

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

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

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

Read the monitor’s August 29 report here.

Read the monitor’s Sept. 1 addendum here.

RI Budget Adds $100M To Human Services

By Gina Macris

Rhode Island’s next fiscal year promises to turn a corner in restoring services for children and adults with disabilities with about $100 million in new funding and a new long-term plan to reassess the rates the state pays private service providers.

The House and Senate passed the $13.6 billion budget a week apart, with the Senate vote held June 23. The spending plan needs only the governor’s signature before it goes into effect July 1.

About a third of the funding, $35 million from the federal-state Medicaid program, will add $2.25 an hour to the rate paid direct care workers in the private sector who support adults with developmental disabilities. Their starting pay will increase from $15.75 to $18.

There also will be raises for supervisory personnel, but those figures have not yet been made pubic. A spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) said June 24 that the plan for the rollout is to have the raises released to providers July 1 so workers do not have to wait for retroactive checks.

The $35-million fund for wage hikes is part of a total Medicaid allocation of $390.3 million to the Division of Developmental Disabilities (DDD) at BHDDH, about $59.4 million more than in the current budget. The total includes $35 million for the raises, another $10 million to help private service providers move toward community-based services, and roughly $30 million for the operation of a separate state-run group home system. About 4,000 individuals are eligible for services from DDD.

Across the human services, the state budget also provides for:

• $13 million for repair of state-owned group homes

• $5.5 million in American Rescue Plan Act funding for early intervention services for infants and toddlers with developmental delays

• $4 million for a rate increase for early intervention providers

• $22 million toward rate increases for home-based treatment services (HBTS), personal assistance service support (PASS), applied behavioral analysis (ABA), and respite care

• $1 million enabling adults with developmental disabilities to acquire tablets and cell phones

Separately, the budget requires the health insurance commissioner to hire an outside consultant to conduct a comprehensive review of Medicaid rates paid all private human service providers working for state agencies in time to be incorporated in the state budget July 1, 2024. After that, the rates will be reviewed every two years, according to language in the budget.

The Senate had favored the same approach to rate review for all medical and clinical programs funded by the federal-state Medicaid program, but the House did not go along.

Tina Spears, executive director of the Community Provider Network of Rhode Island, said: “This budget sends a clear message that Rhode Islanders with disabilities, and the people that provide them with services, belong and are valued in our great state.”

She called the health insurance commissioner’s planned rate review a “historic investment” in a long-term plan to address a workforce crisis plaguing community-based supports for children and adults with disabilities and behavioral health conditions.

“The Senate has made the health and human services system a priority this legislative session, and because of the hard work of our legislative leaders, this budget will have an impact on everyday Rhode Islanders,” she said.

RI House Finance: Big Bucks for DD, Human Services

By Gina Macris

Last June, direct care workers serving adults with developmental disabilities in Rhode Island were making an average of about $13.18 an hour.

In July, 2021, their starting pay jumped to about $15.75 an hour. And beginning July 1, they will make about $18 an hour – a $2.25 increase - if the state budget passed by the House Finance Committee last week becomes law.

The latest proposed raise, costing about $35 million in state and federal Medicaid funding, has been driven by the state’s efforts to comply with federal court orders reinforcing a 2014 consent decree that requires a shift to community-based services as mandated by the Americans With Disabilities Act.

A central issue in the court case is an inability to attract enough workers to carry out the reforms. With the blame for the shortage on low wage scales, the state is under court order to raise the direct care rate to $20 by 2024.

In all, the House Finance Committee would allocate $390.3 million from the federal-state Medicaid program to the Division of Developmental Disabilities, about $59.4 million more than in the current budget. The total includes $35 million for the raises, another $10 million to help private service providers move toward community-based services, and roughly $30 million for the operation of a separate state-run group home system.

The privately-run system the state relies on to provide most services for adults with developmental disabilities has been underfunded for a decade, according to the state’s own consultants.

In a bid for new consulting work last fall, Health Management Associates said that in 2011, the General Assembly underfunded the recommendations of its Burns & Associates division by about 18 percent and didn’t catch up until the rate increases of 2021 – a decade later. That’s when direct care wages exceeded $15, a rate Burns & Associates had proposed for 2012.

Tina Spears, executive director of the Community Provider Network of Rhode Island, applauded the House leadership, including Speaker Joseph Shekarchi, Majority Leader Christopher Blazejewski, and House Finance Committee Chairman Marvin Abney for “putting working families first.”

This year’s spending plan also recognizes that the workforce shortage in developmental disabilities extends to all sectors of the human services.

The proposed budget would authorize the health insurance commissioner to oversee an outside review all private human service programs licensed or contracted to state agencies, with the aim of recommending fair market reimbursement rates.

Once the baseline is established, a rate review would occur every two years for privately-run programs used by BHDDH, the Department of Human Services, the Department of Children, Youth and Families, Department of Health, and Medicaid.

The baseline analysis of Medicaid reimbursement rates would enable Rhode Island to become more competitive in attracting caregivers and the periodic rate review would prevent the system from slipping below market rates in the future.

“I’m excited about that. We’re doing something we’ve never done before,” said Sen. Louis DiPalma, D-Middletown, of the proposed changes in the way the state would approachMedicaid reimbursement for private human services.

The comprehensive review and the biennial rate update may seem mundane to many people, but ”it’s a critical thing to vulnerable populations in the state,” DiPalma said.

He and Rep. Julie Casimiro, D-North Kingstown, sponsored companion stand-alone legislation calling for the two-step rate review process.

Spears, the CPNRI director, called the budget an “investment in Rhode Island’s most vulnerable populations.” It sends a “clear message that people of all abilities should be able to access the care they need to live full, inclusive lives in our communities,” she said in a statement.

The House Finance Committee shifted responsibility for the comprehensive rate study from the Executive Office of Human Services to the health insurance commissioner and eliminated a community advisory committee that some critics said might pose a conflict of interest.

The committee also extended the deadline for the initial review for several months, until October, 2023. The extension means that rate changes could not be enacted until mid-2024, instead of next year, as DiPalma and Casimiro had hoped.

In separate legislation, DiPalma and Casimiro had called for a companion baseline study and biennial rate reviews for all Medicaid-funded medical and clinical programs in the state, but these services were not included in the House Finance Committee’s budget. There were substantial one-time reimbursement rate increases for some medical services, like maternity labor and deliver and dental care.,

Other initiatives aimed at strengthening children’s services and mental health come from federal American Rescue Pan Act (ARPA) funding. They include:

• $30 million for community behavioral health clinics

• $12 million for a children’s residential psychiatric treatment center

• $8 million for a short-term stay unit at Butler Hospital, the state’s only private psychiatric hospital for adults

• $7.5 million to shore up pediatric primary care, which lost capacity during the COVID-19 pandemic

• $5.5 million to attract early intervention professionals and reduce waiting lists for therapy among infants and toddlers with developmental disabilities.

Developmental disabilities spending for adults, meanwhile, contains about $10 million in expenses to conform with an in “Action Plan” the state proposed last fall to avoid a hearing over contempt allegations over non-compliance with the consent decree.

Most of that money, $8 million in federal-state Medicaid money, would continue a “transition and transformation fund” to help private agencies and those who direct their own service program change over to individualized, community-based services. Two million of the $8 million would be reserved for the “self-directed” individuals and families.

Another $1 million would fund technology like cell phones and tablets for adults with developmental disabilities to give them access to the same tools that many people take for granted today. And $1 million would provide for state infrastructure to implement and manage compliance with recent consent decree initiatives.

The full House will consider the overall proposed state budget- $13.6 billion - on Thursday.

RI Misses First Deadline in DD 'Action Plan'

By Gina Macris

A week has passed since the state of Rhode Island was to have awarded a contract for a review of the rates it pays private providers of developmental disabilities services – the first step in an “Action Plan” for correcting long-standing civil rights violations.

The plan, approved by Chief Judge John J. McConnell, Jr. of the U.S. District Court, avoided a contempt hearing and the risk of heavy fines.

The Action Plan says the contract would be awarded Nov. 1, and work would begin Nov. 15.

But on the morning of Nov. 9, the state’s website for the Division of Purchases indicated that the bids were still under review.

A total of five consulting agencies submitted bids. They are Guidehouse, Inc., Health Management Associates, Inc.; Mercer Health and Benefits LLC, Milliman, and Public Consulting Group. The rate review is considered the foundation for changes that would overhaul the service system to promote inclusion of adults with developmental disabilities in their communities - a transformation intended to comply with the Americans With Disabilities Act and a 2014 consent decree.

The bid amounts have not been disclosed, nor has the state made public its budget for the work, which is projected to take about a year.

Asked about the amounts the five firms bid, a spokesman for the state Department of Administration said in a statement late last month:

“As this in an RFP, (request for proposals) the proposals will undergo the technical and cost evaluation review. We cannot comment on the cost until an award is made, nor do we have an estimate when that will happen.”

Efforts to reach several state officials for comment on the delay in awarding the contract were not immediately successful.

In the last two and a half years, the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has spent more than $1 million on an analysis of the developmental disabilities system by the New England States Consortium Systems Organization (NESCSO).

NESCSO, which worked 18 months on the project, was instructed to develop various scenarios for change but told not to make any recommendations. The BHDDH director at the time of the contract award, Rebecca Boss, said the work was intended to expand the department’s analytical capability.

Since the project was completed in 2020, BHDDH has not had any public comment on the work.

RI Proposes DD Action Plan To Avoid Contempt Of Court

By Gina Macris

The state of Rhode Island would raise the pay of caregivers for adults with developmental disabilities to $20 by mid-2023 as part of an “action plan” submitted Tuesday, Oct. 19, to fend off a contempt hearing in federal court over continued violations of a 2014 consent decree mandating the integration of this population in their communities.

The contempt hearing, which had been scheduled to begin Oct. 18 and run through Oct. 22, was canceled last week without explanation by Chief Judge John J. McConnell, Jr., of the U.S. District Court. There previously had been indications the state was working on a settlement proposal.

The action plan also promised that workers would get an interim raise, from $15.75 an hour to $18 an hour, to take effect July 1, 2022, as well as the development of an “intensive” and coordinated statewide initiative involving the Department of Labor and Training, the Community College of Rhode Island, and other organizations to recruit and retain skilled candidates to fill gaps in the workforce necessary to support adults with developmental disabilities who want to be integrated into their communities.

In addition, a total of $12 million would be set aside for a “transformation fund” aimed at supporting private service providers as they go through the first two parts of a three-part transition period from a system originally framed around segregated group care to one that promotes individualized services in the community. Of the $12 million total, $2 million would be reserved to help families who self-direct their own programs, essentially acting as independent employers and program directors for staff serving individual loved ones.

The remaining $10 million would be divided into grants to enable provider agencies to begin shifting to integrated services during the next 12 months, with provisions for considering more funding to expand program innovations during a third phase.

In addition, the action plan commits the state to setting aside $2 million to help adults with intellectual and developmental challenges acquire technology. While smartphones and tablets have become ubiquitous, many adults with developmental disabilities do not have access to the internet.

Overall, the plan appears to conform to several orders issued by McConnell since the summer of 2020 to bring the state into compliance with the consent decree.

A permanent budgetary, operational, and bureaucratic framework for a new developmental disabilities system would emerge from a rate review study that is expected to begin in coming weeks. The Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, (BHDDH) plans to award the contract by Nov. 1. BHDDH originally required the work to be done in six months, but the action plan said the deadline will be December 1, 2022, a little more than a year from now.

The governor’s budget proposal for the fiscal year beginning July 1, 2022 (Fiscal Year 23) “will recognize” preliminary recommendations of the rate review consultants, and “the State will work in good faith to incorporate the reasonable recommendations set forth in the final rate review project” in the governor’s following budget proposal for the fiscal year beginning July 1, 2023 (Fiscal Year 24), the action plan says.

Because the state needs to expand the workforce and hike wages to deliver on the individualized, community-based supports required by the consent decree, reforms are expected to require a significant financial commitment by the General Assembly.

The upcoming rate review would add dollars and cents to the picture and include recommendations for reimbursement models that would stabilize the finances of provider agencies. Providers say the current fee-for-service model does not pay their actual costs, including free care often given to individuals while the agencies appeal service cuts.

The monetary changes and any new provider reimbursement model would have to be approved by the General Assembly. To move forward, the action plan also needs approval from the U.S. Department of Justice and the court..

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

RI Faces Uphill Climb Halfway Through DD Consent Decree Implementation

Bar graph from RI’s latest report to federal court monitor indicates RI is on track to meet one of three categories of employment targets in 2019. “Youth Exit” refers to those those who left high school between 2013 and 2016. “Sheltered Workshop” and “Day Program” refer to persons who spent most of their time in those respective settings when the consent decree was signed.

By Gina Macris

Halfway through Rhode Island’s decade-long agreement with the federal government to ensure that adults with developmental disabilities can work and enjoy leisure time in the larger community:

• Rhode Island has linked 38 percent of its intellectually challenged residents to acceptable jobs, prompting a federal monitor to warn that it needs to step up its game

• Service providers argue that continued progress will take a larger financial investment than the state is making

• Success stories abound but some families remain skeptical about whether the changes will ever work for their relatives.

Five years and three months after Rhode Island signed a federal consent decree to help adults with developmental disabilities get regular jobs and lead regular lives in their communities, 857 people have found employment. Yet, 1,398 others are still waiting for the right job match or for the services they need to prepare for work.

The pace of adding individuals to the employed category has slowed dramatically. Only 37 individuals were matched with jobs during the first two quarters of the current year. To meet its overall employment target for 2019, the state will have to find suitable job placements for 199 more adults. That would require a pace in the second half of the year that is five times faster than the first half.

Though the federal consent decree was signed in 2014, meaningful efforts to comply with its terms did not get underway until two years later, when a federal judge threatened to hold Rhode Island in contempt and levy fines if it did not take numerous and precise steps to begin compliance in a systematic way. At that point, state officials were struggling even to come up with an accurate count of the number of individuals protected by the consent decree, so inadequate was its data collection.

The active census of the consent decree population has grown since 2016, when the judge ordered the state to improve its record-keeping and the monitor forced the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) and the Rhode Island Department of Education (RIDE) to look again at special education students who might be eligible for adult services.

The most recent figures show that there are 3,764 intellectually challenged adults active either with BHDDH or RIDE who covered by the consent decree.

Of that total, 211 were employed in the community prior to the consent decree. Some have signaled they don’t want to work, either because they are of retirement age or for other reasons. Nearly 1,200 others are still in school and not yet seeking jobs.

Of the 2,255 adults who must be offered employment over the life of the consent decree, 38 percent have landed jobs.

The figures are re-calculated every three months.

Employment data from the state’s report to the consent decree monitor as of June 30, 2019. broken down by categories of persons who must be offered jobs. “Youth exit” refers to those those who left high school between 2013 and 2016. “Sheltered Workshop” and “Day Program” refer to persons who spent most of their time in those respective settings when the consent decree was signed.

Rhode Island agreed to overhaul its services for the developmentally disabled population after an investigation by the U.S. Department of Justice found the state’s over-reliance on segregated sheltered workshops and day care centers violated the integration mandate of the Americans With Disabilities Act.

People with disabilities have the civil right to the supports and services they need to live as part of their communities to the extent that it is therapeutically appropriate, the U.S. Supreme Court said in the Olmstead decision of 1999, which upheld the integration mandate. In other words, integration should be the norm, not the exception.

Some people couldn’t wait to get out of sheltered workshops when the consent decree was signed and quickly found jobs in the community with a little bit of assistance. But some families with sons and daughters who have more complex needs saw sheltered workshops close without any transition plan. For some of them, the consent decree continues to represent a sense of loss.

At a recent public forum, Kerri Zanchi, director of the Division of Developmental Disabilities (DDD), and Brian Gosselin, the state’s consent decree coordinator, had just finished applauding the successes of those who have found jobs or are on their way to shaping their careers, when Trudy Chartier spoke up on behalf of her daughter.

Trudy Chartier * all photos by Anne Peters

Her daughter is 55, deaf, has intellectual and behavioral problems and uses a wheelchair, Chartier said. She wants a job in the community and she’s been looking for five years.

Her daughter was in a sheltered workshop for a while, Chartier said, and “she loved it.”

“She didn’t care about making $2 an hour,” her mother said, and she made friends there. Now, she said her daughter “is not getting anywhere” and is “so dissatisfied.”

At the age of 80, Chartier said, she doesn’t have the energy she once had to help her daughter change things.

Later, Douglas Porch sounded a similar concern. “I can understand that the idea is to get them into the community, but what it’s actually done is destroyed my daughter’s community, because you’ve taken away her friends.”

“She’s in a group home, with nothing for her to do,” Porch said.

Zanchi, the DDD director, said that the consent decree certainly has changed the way people receive services. The intent is “not to isolate, but the opposite, to build communities,” she said.

“If that’s not working and it sounds like it’s not, we need to hear about that,” Zanchi said. “We can help you so that she can engage with her peers more effectively.”

Another parent, Greg Mroczek, also spoke up. “In terms of all the possible models, isn’t a sheltered workshop for a segment of the DD population the best possible model? Isn’t that what people are saying? It worked for my daughter as well,” he said, and nothing has replaced it.

Kerri Zanchi

He asked whether the sheltered workshop is “off the table” in “any way, shape or form” in Rhode Island.

Zanchi talked about the state’s Employment First policy, which values full integration and“investing in the skills and talent of every person we support.”

“We know that individuals of all abilities have had successful employment outcomes. We also know that employment is not necessarily what everybody wants,” Zanchi said.

“Striking that balance is a challenge,” she said. The state’s developmental disability service system and and its partners are working hard to help meet people’s needs, Zanchi said.

Rebecca Boss

When Zanchi was hired at the start of 2017, she was the first professional in developmental disability services to run the Division of Developmental Disabilities in about a decade.

Zanchi and Rebecca Boss, the BHDDH director, have improved the bureaucratic infrastructure to foster employment, professional development, quality control, and communications with families and consumers and the private agencies the department relies on to deliver services that will meet the monitor’s standards.

For example, the developmental disabilities staff has been expanded and reorganized. An electronic data management system has been introduced. BHDDH invited providers and representatives of the community to the table to overhaul regulations governing the operations of the service providers and has maintained a quality assurance advisory council, with community representation.

Broadly speaking, the leadership of Boss and Zanchi has set the tone for a philosophical shift in which employment is part of a long-range campaign to open the door to self-determination for adults with developmental disabilities – in keeping with the mandates of the consent decree. The state’s last sheltered workshop closed in 2018.

The consent decree also has fostered a revival of advocacy in the community and the legislature, where there had been a vacuum once an older generation of leaders had passed on.

So why isn’t the glass half full at the halfway point in the decade-long life of the consent decree? In a word, money.

Advocates say a central issue is the lack of an investment in the ability of the system to reach more people with the array of services that will open doors and enable them to find their places in the community.

To satisfy the requirements of the consent decree, the state relies on the efforts of private agencies that provide the actual direct services.

The federal monitor in the consent decree case, Charles Moseley, has asked the state to get to the bottom of what he described as a lack of “capacity” on the part of these private agencies to take on new clients.

BHDDH is circling around the funding issue with an outside review of the fee-for-service rate structure governing developmental disability services. That analysis is designed to expand the analytical capabilities BHDDH, leaving the policy decisions to the department leadership.

Advocates for adults with developmental disabilities, most prominently state Senator Louis DiPalma, D-Middletown, say there must be a public discussion about how much money it will take in the long run to complete the transformation from sheltered workshops and day care centers into one that assists people in finding their way in life. DiPalma chairs a special legislative commission studying the current fee-for-service system.

In the meantime, DDD is soliciting a proposal for the third iteration of its performance-based supported employment program, which is designed to focus on people who have never held a job. This group includes young people completing high school and seeking adult services for the first time, as well as adults who face multiple challenges and would find it difficult to fill the standard job descriptions put out by employers.

The new Person-Centered Supported Employment Performance Program (PCSEPP 3.0) is expected to launch Jan.1 with an emphasis on “customized” employment, tailored to match an individual’s strengths and interests with the needs of an employer who is willing to carve up the work at hand in a non-traditional way.

The concept of customization is not new.

In Rhode Island, a few adults with developmental disabilities have had customized employment for many years, most often arranged with the support of their families, who hire staff and direct a unique array of services for them rather than relying on an agency.

In addition, the Rhode Island Council on Developmental Disabilities promotes self-employment, a form of customization, through a business incubator created with the help of the Real Pathways RI Project sponsored by the Governor’s Workforce Board.

The DD Council highlights the products and services of self-employed adults with developmental disabilities as part of its annual holiday shopping event, Small Business Saturday Shop RI, scheduled this year for Nov. 30 at the Crowne Plaza Hotel in Warwick.

The U.S. Department of Labor defines customized employment as a “flexible process designed to personalize the employment relationship between a job candidate and an employer in a way that meets the needs of both. It is based on an individualized determination of the strengths, needs, and interests of the person with a disability, and is also designed to meet the specific needs of the employer.”

Since the supported employment program started in 2017, providers have expressed concerns that, because it is tied to the fee-for-service reimbursement system, it does pay for initial investments the agencies might have to make to participate.

Those concerns persisted during a meeting between DDD officials and potential applicants for the customized employment program in mid July. At the providers’ request, DDD has extended the application deadline to October 4.

Womazetta Jones

The state’s new Secretary of Health and Human Services, Womazetta Jones, has promised to be a careful listener to the concerns of the developmental disability community.

Speaking at the recent public forum, after just eight days on the job, Jones acknowledged the state’s efforts to improve services for adults with developmental disabilities but also cautioned against complacency.

Even though the state has substantially increased funding for developmental disabilities in recent years and gained “stable and effective leadership” at BHDDH, “that doesn’t mean anyone in this room or state government is content with recent progress,” she said.

“The moment we think we don’t have more to do, is the moment we have lost our way,” Jones said, signaling that she is available for further discussion of issues affecting people with developmental disabilities.