Tim Vogt, Emerging Leader in Building Inclusive Communities, To Speak in Rhode Island Nov. 3

Tim Vogt Photo courtesy of Tim Vogt

Tim Vogt Photo courtesy of Tim Vogt

Registration information has been corrected.

By Gina Macris

Tim Vogt, a nationally-recognized expert in building inclusive communities, will speak at a free seminar in Rhode Island November 3 that will be sponsored by several organizations that advocate for Rhode Islanders with intellectual and developmental disabilities and their families.

Vogt is executive director of Starfire in Cincinnati, Ohio, where he has developed ways of making connections among individuals that rely on mutual interests and collective strengths while working around disabilities.

“His visionary message is to maximize the positive; minimize the negative,” said Connie Susa, executive director of PLAN RI, one of the sponsoring organizations. Vogt blogs at https://cincibility.wordpress.com/

The November 3 seminar will be at the Dean’s List Academy, 25 Esten Ave., Pawtucket. Check-in will begin at 9 a.m., with the presentation scheduled from 9:30 to 12:30. Anyone planning to attend is asked to register in advance at https://www.eventbrite.com/e/claiming-a-corner-of-community-tickets-51383200536  Additional sponsors are RI FORCE, the Rhode Island Developmental Disabilities Council and the John E. Fogarty Foundation.

The Community Provider Network of Rhode Island, a trade association representing two dozen private organizations that serve adults with developmental disabilities, is a co-sponsor of Vogt’s visit to Rhode Island, Susa said.

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.

DD Advocates Plan Candidates' Forum Oct. 3

By Gina Macris

Two advocacy groups for Rhode Islanders with developmental disabilities will sponsor a legislative forum Wednesday, Oct. 3 at the Newport campus of the Community College of Rhode Island.  

As of Sept. 28, seven candidates, including four state senators , two state representatives and one challenger, had confirmed their attendance, according to a spokesman for Rhode Island FORCE and the Newport County Parents Advocacy Group.  

The seven candidates are: Sen. Louis DiPalma, D-Middletown, Newport, Little Compton, and Tiverton; Sen. James Seveney, D-Portsmouth, Bristol, and Tiverton; Sen. Dawn Euer, D-Newport and Jamestown; and  Sen. Deborah Ruggiero, D-Jamestown and Middletown.  

The candidates for state representative are: Rep. Dennis Canario, D-Portsmouth, Tiverton, and Little Compton; Rep. Kenneth J. Mendonca, R-Portsmouth and Middletown;  and Mendonca’s Democratic challenger, Terri Cortvriend, who chairs the Portsmouth School Committee.  

Christopher Semonelli, spokesman for the two advocacy groups, said the forum will run from 5 to 7 p.m. RI FORCE, which stands for Families Organized For Reform, Change, and Empowerment, plans to stream the session live on its Facebook page here.  

For an hour prior to the session, various organizations will hold an information fair geared to families supporting those with intellectual and developmental disabilities.  

Semonelli said anyone planning to attend is asked to sign up at Eventbrite

RI Senate Poised To Launch Study of The Way State Reimburses Private Providers of DD Services

By Gina Macris

A proposal for a special commission to study Rhode Island’s fee-for-service reimbursement system for private providers of developmental disability services appears headed for approval on the Rhode Island Senate floor May 1.

The 19-member Senate commission, including representatives of state government, service providers, advocates and the public, would report its findings by March 1, 2019, in time for any recommended legislation to be enacted during next year’s session of the General Assembly.

The  Senate’s Committee on Health and Human Services recommended passage of a resolution creating the commission on a unanimous vote April 24.

The current reimbursement system, called “Project Sustainability,” has been in effect for nearly seven years, which means that there is plenty of data available for analysis, according to Sen. Louis DiPalma, D-Middletown, the principal sponsor of the resolution.

“The goal of 'Project Sustainability' was to bring predictability, efficiency and transparency to the way in which the state pays for the developmentally disabled,” according to the resolution.

But DiPalma said that “we’ve seen some challenges” in Project Sustainability, like a requirement that providers document daytime services in 15-minute increments. That feature has been assailed by service agencies as overly burdensome and costly.

“We have to take a look back and see what worked, what hasn’t worked, and what changes are needed going forward,” DiPalma said.

DiPalma, the Senate’s most vocal advocate for adults with developmental disabilities, is expected to be among three legislators on the 19-member commission to be appointed by the Senate President. 

He said its recommendations would not sit on the shelf. “I don’t do anything for the sake of doing it. I’m about doing the analysis and getting the job done,”  said DiPalma.

In addition, “the members of the commission won’t let it happen,” he said. There will be “joint accountability” for what happens, inside and outside the General Assembly, DiPalma said. 

The membership of the commission would include representation from the Rhode Island Developmental Disabilities Council and a parent group, Rhode Island Families Organized For Reform Change And Empowerment (RI FORCE), as well as the Rhode Island Disability Law Center. Human services officials from the executive branch of government would include the director of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) and several other representatives of BHDDH and the Executive Office of Health and Human Services.  

The commission would convene at a time of renewed parent advocacy and heightened scrutiny of developmental disability funding by the U.S. District Court in the wake of Governor Gina Raimondo's plans to cut $18.4 million from reimbursements to private providers beginning July 1.

In a 2014 consent decree with the U.S. Department of Justice, the state pledged to move from segregated sheltered workshops and non-work day services to an integrated, community-based system to comply with the Americans With Disabilities Act. 

In the most recent court hearing April 10, providers warned Judge John J. McConnell, Jr. that they would not be able to continue consent decree compliance efforts if the state enacts Raimondo's proposed budget cuts. d

McConnell is expected to consider taking action on the basis of recommendations from an independent monitor in the case sometime before the General Assembly finalizes the next budget. The monitor, Charles Moseley, was to seek consensus from state officials and service providers before submitting his report to McConnell.

If no agreement can be reached, McConnell has said, he is prepared to hear evidence and arguments before deciding on a course of action. 

Independent DD Advocacy Group Surveys RI Families To Define Most Pressing Needs

By Gina Macris

An independent organization focused on innovation and success for people of all abilities is asking families to help shape the group’s advocacy by answering four questions about the lives of loved ones facing intellectual or developmental challenges.

RI Force – Rhode Island Families Organized For Reform, Change, and Empowerment – has set up an online questionnaire at SurveyMonkey that is aimed at those who could not attend the inaugural cafe conversations held in November to bring families together around common goals.

To take the survey, click here: https://www.surveymonkey.com/r/NHXMSGL

The introduction to the survey explains that “cafe conversation methodology is a simple, effective, and flexible format for hosting large group dialogue. It simply means ‘shaping our world through conversations that matter.’ ” 

The survey, which promises anonymity to respondents, asks individuals to describe the “issues and challenges currently facing your family in regards to the quality of life of your loved one.”

It asks respondents to identify things that can change to improve the quality of life for loved ones, after looking holistically at public, non-profit and private facets of the community, including the arts, human services, environment, health care, education, media and business.

Finally, the survey asks for “one idea that would have the biggest impact” on a loved one’s quality of life.

The deadline for completing the survey is Jan. 30, said Ken Renaud, a leader of RI Force. The group plans to publish the results in February.

 

New RI Family Advocacy Group To Launch Nov. 1; Organizers Seek Comment On Legislative Priorities

By Gina Macris

What are the top concerns for Rhode Island families who support one of their own in dealing with the challenges of developmental disabilities?  How do family members think they can have an impact on the next session of the General Assembly?

Those are the overarching questions that will occupy twin “Coffee and Cafe Conversation“ events  in Providence and Newport  on Wednesday, Nov. 1, to launch Rhode Island FORCE (Families Organized for Change, Reform and Empowerment.)

The fledgling organization aims to fill a void in grass roots advocacy during the last several years, when the legislature slashed Medicaid funding for developmental disability services, amid assurances from the executive branch that private agencies could provide the same service for less money.  The U.S. Department of Justice subsequently found the state’s over reliance on sheltered workshops violated the Americans With Disabilities Act.

The U.S. District Court now oversees reform efforts of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, which has had a complete turnover in management. However, there is still no broad-based family voice in the public policy discussion surrounding changes to the service system – and how to pay for these reforms.  

The work of the court and of reform-minded professionals in the field of developmental disabilities cannot replace family advocacy efforts, said Ken Renaud, a consultant who will facilitate the discussions at “Coffee and Cafe Conversation,” in the morning in Providence and the late afternoon in Newport.

“We can’t expect other people to do this,” he said. Renaud himself has a family member with developmental disabilities.

The conversation about strategic priorities began several months ago with a small leadership group of parents and other family members who now want to reach out to others to build consensus,  Renaud said.

While the group has start-up support from the Rhode Island Developmental Disabilities Council, the advance publicity for “Coffee and Cafe Conversation” stresses the independence of Rhode Island FORCE from any state agency or community organization.  

Renaud said that he will ask those who attend to relay their experiences with the developmental disability system and a series of other questions that will build up to a vote on the top three issues they wish to tackle through advocacy. The sessions will be recorded to provide the leadership group with documentation for follow-up activities, he said.

Renaud emphasized that the sessions are “not for providers” of developmental disability services.

“A lot of people who might have a family member also work in a professional capacity” in the field,  he said. “When they walk in the room, we want them to have their ‘family member’ hat on,” he said.

On November 1, Coffee and Cafe Conversation will be from 10 a.m. to noon at the Roger Williams Park Casino, 1000 Elmwood Avenue, Providence, and from 5:30 to 7:30 at the Newport Public Library, 300 Spring St., Newport. For more information, contact Kevin Nerney at the Rhode Island Developmental Disabilities Council, kevinnerney@riddc.org or at 401-737-1238.

Each state has a developmental disabilities council, empowered by the Developmentally Disabled and Bill of Rights Act enacted by Congress in 1975 to help individuals live inclusive lives. The councils' mandate is broader than family advocacy. Rhode Island’s 24 council members are appointed by the Governor. 

Roger Williams Park Casino:

 

Newport Public Library: