Collaboration Needed to Find Jobs, Solve Transportation Problems, For People With DD

By Gina Macris

For people with developmental disabilities, reliable public transportation – or the lack of it – can mean the difference between accepting a job offer and staying home.

A Coventry, RI man who had a chance to work at a Home Depot near his home faced that dilemma when he learned that the state’s paratransit system for people with disabilities could not go into the shopping center where the store is located.

To solve the transportation problem, the man’s family and his job developer, Rory Carmody, Director of Program Services at AccessPoint RI, pitch in to drive him to and from work, said Carmody’s boss, Tom Kane. But the hours the man can work are limited to the times Carmody and the man’s family are available for drop-off and pick-up, said Kane.

Kane, the CEO of AccessPoint, shared the story in a conversation after a June 18 meeting of a special legislative commission studying Project Sustainability, the state’s fee-for-service reimbursement system for private services for adults with developmental disabilities.

L to R: Scott Jensen and Scott Avedesian

L to R: Scott Jensen and Scott Avedesian

The session focused on the intersection of jobs and transportation, featuring remarks from three speakers:

· Scott Avedesian, CEO of the Rhode Island Public Transit Authority (RIPTA)

· Scott Jensen, Director of the Department of Labor and Training (DLT)

· Robert Kalaskowski, Chief of Policy and Planning for the Governor’s Workforce Board.

The example of the Coventry man illustrates the challenges of relying on the paratransit program, which operates only along corridors that mimic RIPTA’s regular bus routes. The shared RIde program for people with disabilities may drop off and pick up at sites no more than three-quarters of a mile outside a regular bus route, according to the RIPTA website.

Because RIPTA doesn’t send regular buses to Little Compton or Foster, the RIde option for residents with disabilities is not available either, said Sen. Louis DiPalma, D-Middletown. And, he added, there’s only one public transit stop in Tiverton.

Recently, the directors of the agencies responsible for services for the elderly and those with intellectual and developmental disabilities accompanied Avedesian on a paratransit run that picked up four individuals, one of them in a wheelchair, and took them to their various destinations.

Rebecca Boss, the director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), said it was a “really good experience for everyone to see the hands-on, labor-intensive type of transit that we perform.”

For the officials, the experience took two and a half hours, from the time the van left the RIPTA garage to get the first client until the time it returned, Avedesian and Boss agreed. It happened to be a day with a lot of traffic, Avedesian added.

Even though the clients weren’t on the van all that time, Kate Sherlock, a commission member, said the run took too long. “I cry when I have to be in the car for two hours,” she said.

Avedesian said that for him, the biggest takeaway from the experience was the need for matching the locations of clients and available jobs to minimize travel time, “so that we’re not taking someone all the way from Woonsocket to Newport.”

Avedesian said he’s impressed by the “intensive amount of time, money and labor involved in moving one person from one end of the state to the other.”

DiPalma said the average cost of a paratransit run is $34, but the program is reimbursed roughly $8 to $14 of that cost, depending on the intensity of the client’s disability. He said the reimbursements are Medicaid-authorized federal and state transportation dollars assigned to BHDDH clients to cover travel. No public transit system in the country is financially self-sufficient, DiPalma noted.

DiPalma has convened an informal group of representatives of public and private agencies who are interested in solving the transportation problems of people with disabilities. The agencies include BHDDH , DLT, RIPTA, the Community Provider Network of Rhode Island, the Providence Chamber of Commerce, the office of U.S. Rep. James Langevin, and others, he said.

Moving forward, transportation must become more malleable to the needs of the people, he said. If someone lives in Glocester and has a job in Newport, that person may be able to get work closer to home, but “if that’s the job they have, that’s the job they have,” DiPalma said.

Jensen

Jensen

Jensen of DLT offered a different way of looking at the transportation problem.

If people with developmental disabilities can be viewed as a source of excellent workers, rather than a population needing support, a stronger argument can be made for investing more in transportation, because of the value this group brings to the economy, he said.

“The company will be receiving value, the person will be paying income tax and can buy more things than they otherwise would,” Jensen said.

He said “coalitions of the willing” are “trying to find those positions where companies recognize the value of people with developmental disabilities. That takes time.”

He said a “handful” of companies, like Home Depot and CVS, have made the “moral choice” to employ individuals with developmental disabilities.

“We want to also help make this a practical choice” for many businesses, Jensen said, by starting with employers’ demands and finding the right match in the labor force - “the right person, in the right place, at the right time, and with the right skill set.”

BHDDH officials recently put the employment rate for adults with developmental disabilities at 29 percent.

Kalaskowski

Kalaskowski

Kalaskowski, of the Governor’s Workforce Board, said the state is promoting that strategy in the Real Pathways program, part of the broader Real Jobs initiative.

In Real Pathways, DLT works with private providers of employment-related services for adults with developmental disabilities, promoting collaboration among job developers to find the best match between the employer’s demand and worker skills.

A job developer working alone may not have just the right client and face the choice of either forcing a match that won’t work out in the long run or letting a relationship with an employer die, Kalaskowski said. In a network of job developers, one may pass along a lead to another and they will return the favor down the line, he said.

Andrew McQuaide, a senior director with Perspectives Corporation, said Jensen and his team deserve “a lot of credit” for fostering a culture of collaboration.

McQuaide recalled how one man with developmental disabilities connected with a training opportunity offered by the Rhode Island Nursery and Landscape Association because both he and AccessPoint’s Rory Carmody “spread the word.”

Then, when a job with a landscaping company opened up, someone in the community who knew the man from the RINLA training recommended him for the position. The man got the job “not because DLT put any dollars forward,” McQuaide said, but because of the “culture and the connections” that DLT promoted.

Boss, the BHDDH director, said she is excited about the collaboration with DLT. Tracey Cunningham, the director of employment services, and other dedicated officials at BHDDH do a good job in helping adults with developmental disabilities find work, but the staff at DLT “lives, eats and breathes” jobs, she said.

The next meeting of the Project Sustainability commission, set for June 25, has been cancelled because of likely schedule conflicts as the General Assembly wraps up its 2019 session, DiPalma said. He said the meeting will be re-scheduled sometime in July.

"Project Sustainability” Commission To Continue Hearing Members’ Recommendations May 22

By Gina Macris

Members of a special legislative commission studying Rhode Island’s funding of services for adults with developmental disabilities are expected to finish presenting their recommendations for change at the commission’s next meeting Wednesday, May 22, according to the chairman, Sen. Louis DiPalma.

The recommendations which have been aired coalesce around a vision of a future in which adults with developmental disabilities get the supports they need to live where they want, find a job, and do what they want in their spare time, just like anyone else, in keeping with the integration mandate of the Americans With Disabilities Act. That mandate is reflected both in the Medicaid Home and Community Based Rule (HCBS) and the 2014 federal consent decree between the state and the U.S. Department of Justice.

To realize an inclusive future, it is critical that the state adopt an alternative to the current fee-for-service funding model, which poses “challenges and barriers” for the for the privately-run system of developmental disability services, DiPalma said.

The state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has begun a review of the rates and the rate model for paying private providers and invites public comment by email at this address: BHDDH.AskDD@bhddh.ri.gov (Please copy and paste the email address.)

DiPalma said commission members have submitted comments on the rate review to BHDDH. In addition, the recommendations aired so far have sounded some common themes, including a need for better transportation and a desire for a seamless bureaucracy that can meet the needs of individuals at all stages of life, DiPalma said.

The transition between special education services in high school and the adult service system has been compared to “falling off a cliff” by many parents, according to anecdotal reports to the commission.

DiPalma said he will ask RIPTA, the Rhode Island Public Transit Authority, and the Department of Labor and Training to become directly involved in efforts to redesign the developmental disabilities service system. The consent decree, which resulted in the elimination of sheltered workshops in Rhode Island, calls on the state to increase supports to adults with developmental disabilities seeking jobs in the community.

The May 22 commission meeting will begin at 2 p.m. in the Senate Lounge at the State House.

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.

'Our Lives Turned Upside Down' When Daughter Entered RI Adult DD System, Mother Says

Sustainability+commission+Dec.+meeting+main+pic+cropped+.jpg

Louis DiPalma, Rebecca Boss, and Kerri Zanchi watch A. Anthony Antosh of Rhode Island College present consumer and family perspectives on the state’s services for adults with developmental disabilities Photo by Anne Peters

By Gina Macris

A Rhode Island Senate study commission spent nearly two hours Dec. 12 laying out a catalog of strengths and weaknesses in Rhode Island’s system for helping people with developmental disabilities.

But in the end, the personal stories of two mothers, Amy Kelly of Smithfield and Martha Costa of Portsmouth, focused the commission’s attention on the crises now unfolding for at least several families who are at their wits end.

In the catalogue, their experiences come under “residential services-need for specialized medical/behavioral residential models.”

For Amy Kelly, that means that every single service provider in Rhode Island – about three dozen - has turned away her 21 year-old daughter, who is autistic, has behavioral problems, and functions in many ways as a kindergartener.

“So now what do I do?” Kelly asked in a letter to the commission chairman, Sen. Louis DiPalma, D-Middletown. Kelly is a widow, and works fulltime. Her daughter, Kayla, was asked to leave the Trudeau Center in Warwick because of injuries to staff.

For a month now, Kayla has been at home all the time and her problematic behaviors have intensified, Kelly wrote. “She is out of her routine, asking for “friends,” “yellow bus,” “trip,” and other favorite things and experiences that she misses..

Kelly has been forced to choose “self-directed” services, meaning that she must find her own workers,“which is pretty much impossible,” she wrote to DiPalma.

And the Home Based Therapeutic Services that helped Kayla outside of school hours while she was still in special education are no longer available.

“I cannot believe there are no programs in RI for families in this situation!” Kelly wrote. “When my daughter turned 21 in May everything in our lives turned upside down.”

Martha Costa * courtesy of Capitol TV

Martha Costa * courtesy of Capitol TV

Martha Costa agreed. She attended the Commission hearing at the State House on behalf of her own family and five others in Portsmouth who have become friends as their children have faced behavioral challenges growing up and have aged out of the school system into purview of the state Division of Developmental Disabilities (DDD).

As the mother of a 22 year-old man on the autism spectrum, she said her experience has been that once young people with complex needs turn 21, “there is really no place for them to go.”

The family might be told to go to a hospital, but with the exception of Butler Hospital in Providence, a mental health facility, “the hospital is horrible, because it’s just more trauma going there.”

The 21 year-old daughter of a friend of Costa’s had meltowns after her mother – her primary caregiver and the one who organized her services - died in September. The woman’s daughter, who has multiple disabilities, was hospitalized because there was “nowhere for her to go,” Costa said. The young woman was “restrained, medically and physically. It’s heartbreaking,” Costa said.

“It’s lucky you have good parents who are helping these kids, but you know, we’re all getting older and we’re not going to be able to,” she said. The aging of parents, who are often primary care givers, is a broad concern among families, according to survey results.

“There are some kids who don’t have that parent support and they’re on the street,” Costa said. “That’s sad, when they can be a very productive part of our community.”

Kerri Zanchi, the state’s Director of Developmental Disabilities, thanked Costa for coming forward.

One of the biggest challenges in residential services, Zanchi said, is a dearth of specialized homes for individuals with behavioral and other complex needs, as well as a lack of therapists and other clinicians to give them the proper attention.

“There’s a huge need coming” as teenagers with complex disabilities leave schools, she said. “We need to know what that need is and we need to start working on it lot earlier than when they turn 21 and come into our system.”

Zanchi referred to the division’s Eligibility by 17 policy, which aims to give families, schools, and the adult system plenty of time to plan a smooth transition.

In the catalogue, one of the “challenges” the state officials listed in implementing the Eligibility by 17 policy is “resource and service difference for transitioning youth vs adult services.” In the summary that family and consumer representatives submitted, they commented that “transition from high school is a ‘nightmare.“

Zanchi continued her response to Costa. “We certainly recognize every day the crises we have to manage” in order to support the individuals involved and to try to grow the system’s capacity, she said.

And there are committed providers who are willing to help the state, but who also want to do that with the right staffing that will keep all individuals safe, Zanchi said. “We are all hands on deck. I know it probably doesn’t feel like enough,” she said.

Costa agreed. “ I understand what you’ve been doing and I know that everyone has been working hard . Still, it’s not enough,” she said.

Gloria Quinn, executive director of West Bay Residential Services, said her agency works very well with the state as a partner in exceptional situations, but it is extremely difficult as long as there there is a paucity of established expertise in the community that is accessible to the developmental disabilities providers.

“Very often we are creating something new, which takes an enormous amount of time,” Quinn said, and the funding is not enough. Most importantly, when the agency helps someone with increased needs it runs the risk of jeopardizing supports for other people, particularly in a residential setting, she said.

Peter Quattromani, President and CEO of United Cerebral Palsy Rhode Island, pointed to the low wages for direct care staff that frustrate all involved; those who love the work but can’t pay the bills, employers who can’t fill jobs, and consumers and families who can’t find suitable services.

“It’s an incredibly difficult job” , he said, and attracting staff is likewise very difficult, given the low wages.

Commission member Kelly Donovan, who herself receives services from DDD, had sparked the conversation by wondering aloud why those with serious behavioral problems have difficulty finding appropriate support.

She said she agreed with Quattromani and Costa, and she added another factor that she believes contributes to the problem: a societal stigma against those with a broad range of mental illnesses who exhibit aggressive behavior.

During the last month, commission members, representing the executive branch of government, private providers, and consumers and their families, were asked to complete a survey cataloging the strengths and weaknesses of the existing Medicaid fee-for-service system, called Project Sustainability.

The commission plans to use the results of the survey, named the “Current State Assessment,” to seek advice from outside experts and further the group’s deliberations in the future, according to a statement issued at DiPalma’s behest.

Directly or indirectly, a lack of adequate funding in various contexts permeated three summaries of the survey results, each one presented by a representative of each of the three segments of the commission. Transportation, for example, has become a bigger problem now that there is a greater emphasis on community-based services, which require more than the two daily trips usually allowed by individual funding authorizations. Families also cited difficulties of non-English speakers in getting information and services.

But Rebecca Boss, director of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, also said the developmental disabilities budget has increased significantly since 2015, and listed advances made in the last two years, including:

  • $6.8 million for supported employment

  • two annual wage increases for direct care workers (The average hourly pay for front-line workers is $11.36 an hour)

  • the acquisition of a modern data management system

  • an increase in staff for quality management, implementation of a federal civil rights consent decree and for Medicaid-mandated Home and Community Based Services, as well as assistance in maximizing the existing budget.

She described the funding needs of the system as “dynamic.”

“We are engaging in discussions with our partners about what those needs are,” Boss said. “Governor (Gina) Raimondo has demonstrated a willingness to look at the system and make adjustments in the budget as we go along. So this is the process that we’re currently working on and engaging in those conversations on a regular basis.”

Raimondo is to present adjustments for the current budget, as well as her proposal for the next fiscal cycle, during the third week of January.

Christopher Semonelli, a commission member and the father of a teenager with complex needs, commented on the origins of Project Sustainability, which seemed to him like system “in a death spiral, and there was basically a feeding frenzy as to how to continue the system; how to go after the available funds.”

“I don’t think the legislative base should be blamed” for cutbacks that launched Project Sustainability in 2011, “because there was a lack of advocacy, “he said. “Strong advocacy could have prevented that from happening. That is huge and needs to be built going forward.”

DiPalma had the last word. Semonelli “made a great point about advocacy, but he shouldn’t let the General Assembly off the hook,” DiPalma said. “This is where the buck stops.”

Read the summaries presented at the meeting. For the state’s assessment, click here. For consumer and advocates’ comments, click here. For service providers’ comments, click here.

RI General Assembly Candidates In Newport County Say They Support DD Worker Raises

By Gina Macris

A call for higher pay for direct service workers who assist persons with developmental disabilities ran like a thread through a General Assembly candidates’ forum in Newport Oct. 3, with several speakers saying better wages will help stabilize the system and improve quality.

Legislators urged an audience of about 25 to make their names and faces known at the State House to press this and other concerns when the General Assembly convenes again in January.

State Sen. Louis DiPalma, D-Newport, Middletown, Little Compton and Tiverton, said that Rhode Island cannot transform services for adults with developmental disabilities on a budget that has the same buying power as it did in 2011.

In Fiscal Year 2011, Rhode Island spent about $242 million on developmental disabilities, DiPalma said. Adjusted for inflation, using the consumer price index, that’s equivalent to the $272 million currently budgeted for the state Division of Developmental Disabilities.

DiPalma offered a glimpse of the work ahead for a Senate-sponsored commission that will convene Tuesday, Oct. 9 to begin discussing the current fee-for-service reimbursement system for private providers of supports to adults facing intellectual and developmental challenges.

The reimbursement system, called “Project Sustainability,” was inaugurated in Fiscal Year 2012, along with cuts that slashed spending on developmental disabilities from $242.6 million to $216.5 million, according to state figures.

Since 2014, the state has been under pressure from the U.S. Department of Justice to end an overreliance on sheltered workshops and other segregated care for adults with developmental disabilities, and instead emphasize competitive employment and integrated non-work activities to comply with the Americans With Disabilities Act.

At the Oct. 3 forum, DiPalma said the current practice of awarding individual funding authorizations according to the “level” of a person’s lack of independence is “just wrong” when successful appeals of individual awards have resulted in supplemental expenditures of up to $25 million a year for legitimate additional services on a case-by-case basis.

DiPalma, the chairman of the commission, said the panel will review every aspect of “Project Sustainability - what it is, how did we get there, and where do we want to go? What are the gaps?” The commission will meet at 3:30 p.m. Oct. 9 in Room 313 of the State House.

Rep. Deborah Ruggiero, D-Jamestown and Middletown, who has six years’ experience on the House Finance Committee, said people with disabilities want the exact same thing that people without disabilities seek – meaningful lives.

“But I’m not sure it’s a one-size-fits-all model, “ she said. “The whole system needs a good 20,000-foot overview.”

“It’s not right that people can make more money at McDonald’s than they can supervising people with intellectual and developmental disabilities, “ Ruggiero said.

One consequence of “Project Sustainability” has been double-digit cuts in wages, which also have derailed benefits such as health insurance, and opportunities for career advancement offered workers by private service-provider agencies. The wage cuts destabilized an entire workforce, which now averages a turnover rate of at least 33 percent a year.

Rep. Dennis Canario, D-Portsmouth, Tiverton and Little Compton, himself the father of someone with developmental disabilities, said that people generally “don’t understand the detrimental effect” of staff turnover on the individuals they assist.

Workers must have “expertise” to keep their clients on an even keel, particularly in some cases where clients are “very involved,” He said that It takes “expertise to turn situations around” or to keep individuals focused on the job at hand.

“When they get up in the morning, they need something to look forward to,” he said of people with disabilities. “We need to provide that type of day to our friends with intellectual and developmental disabilities. Together we can come up with the answers and solutions.”

“Pay inequity is a serious problem,” Canario said. “You’re not going to attract someone highly qualified” for $11 an hour,” he said. (The average pay for direct support workers is slightly less than $11.50 an hour.)

Connecticut and Massachusetts “are way ahead of us,” he said.

DiPalma noted that Massachusetts has already negotiated a minimum $15 hourly wage for direct care workers who are members of the Service Employees International Union. Many of the workers in nearby Massachusetts towns have trained in Rhode Island and still live in Rhode Island, he said.

DiPalma has sponsored a campaign to get a $15 hourly wage in five years, but it stalled in the last session of the General Assembly, when the developmental disability system was threatened with an $18 million cut in services. In the end, the legislature restored the status quo, but no gains were made.

Nevertheless, advocates deserve a “great round of applause for restoring that funding,” said Sen. Dawn Euer, D-Jamestown and Newport. She and others, including Rep. Kenneth Mendonca, R-Portsmouth and Middletown, urged them to keep it up.

Sen. James Seveney, D-Portsmouth, Bristol and Tiverton, signaled that he and his colleagues will again be pushing for a wage increase for direct care workers in the 2019 General Assembly session.

With the 2014 federal consent decree driving more integrated employment and community –based activities, the state must invest in additional transportation to make those opportunities a reality, said Euer. Others echoed her concern about transportation.

Terri Cortvriend, the Democratic candidate for Mendonca’s seat in the House, said she wanted to learn more about developmental disability services, particularly whether individuals and families are satisfied with the greater emphasis on competitive employment. Cortvriend currently chairs the Portsmouth School Committee.

Susan Vandal, a member of the audience, said families who have a child with a developmental disability want a system that allows them a “single point of entry” that begins early intervention for infants and toddlers and takes them seamlessly through the school years into adult services.

Parents must now jump through too many hoops, particularly in the transition from school to adult services, she said. Transition from high school to the adult system is also one of the prime concerns of an independent court monitor overseeing implementation of the consent decree.

Addressing the audience, Canario said legislators “need your help so we can make recommendations on how to fix a broken system.”

“A lot of parents are in the dark and don’t know what to do,” he said. Sometimes they are misled, with plans for services that are on paper but don’t become reality.”

The forum held at the Newport campus of the Community College of Rhode Island, was sponsored by the Newport County Parents Advocacy Group and Rhode Island FORCE (Families Organized for Reform, Change, and Empowerment.) RI FORCE streamed the event live and has posted the recording on its Facebook page, here.