RI Governor Gina Raimondo, left, acknowledges the crowd in the State House Rotunda at a rally May 23 while Hayley Baccaire interprets in American Sign Language. 

By Gina Macris

As 1,000 people with developmental disabilities and their supporters rallied at the Rhode Island State House May 23, Governor Gina Raimondo pledged not only to restore $18.4 million she had proposed cutting from developmental disability services in the next budget, but also to invest in transforming the system.

“I’m here to tell you we’re going to do the right thing,” Raimondo promised the demonstrators. “We’re going to put the $18 million there. We’re going to make sure that the resources are there in order to protect the system,” as well as to “make the system more stable and also transform the system.“

Raimondo, House Speaker Nicholas A. Mattiello, and other legislators addressed hundreds of adults with intellectual and developmental disabilities, their caregivers and family members, who packed the State House Rotunda and the galleries on the second and third floors, while hundreds more milled outside on a nearly cloudless day, bringing the overall crowd to an estimated 1,000.

Meanwhile, a coalition backed by organized labor released a statement saying that 84 percent of Rhode Islanders support a minimum wage of $15 an hour for those who provide direct support to individuals with developmental disabilities, according to a poll done in April by Fleming & Associates.  

In January, Raimondo proposed cutting $18.4 million from reimbursements to private providers for the budget cycle which begins July 1.

But in her appearance at the rally, organized by the Community Provider Network of Rhode Island (CPNRI), Raimondo said that she would not only work with the House and the Senate to reverse that cut but also would support additional investments in developmental disability services.

Raimondo, Mattiello, the House Speaker, and the Senate President, Dominick Ruggerio, all have gone on the record supporting the restoration of the $18 million for developmental disability services since May 10, when the state’s semi-annual revenue estimating conference concluded that revenues will run about $135 million higher in the next 14 months than had been previously anticipated.

Of the three leaders, Raimondo offered the most explicit statement of support yet at the May 18 rally:    

“We’re going to continue with you for a long time and make sure we raise the wages” of caregivers, she said.

Mattiello said, “I know that there are cuts proposed in the budget, but rest assured that we will address those appropriately and make the proper restoration.”

“We’re here to serve and to help,” he said. “And I can think of no better or more important group to help than you folks that are right in front of me.”

Mattiello said he has seen the impact of developmental disabilities on people’s lives, and “that impact weighs significantly on me.”

Senate President Ruggerio was scheduled to speak but was caught up in a meeting and sent his regrets, according to Sen. Louis P. DiPalma, D-Middletown, the first vice-chairman of the Senate Finance Committee.

DiPalma, a persistent and vocal advocate for developmental disabilities, said the state must provide enough funding to improve the wages of caregivers and support a shift from sheltered workshops and segregated day services to a community-based network of integrated services as required by a 2014 consent decree between the state and the U.S. Department of Justice (DOJ.)  Implementation of the decree, overseen by a U.S. District Court judge, a federal court monitor, and DOJ lawyers, is designed to correct violations of Title II of the Americans With Disabilities Act, which gives all those with disabilities the right to access services in their communities.

“As long as I plan to be in the Senate, those are my goals,” DiPalma said. “At the end of the day, this is about ensuring that individuals with intellectual and developmental disabilities have the ability to lead full and prosperous lives, like all others.”

Federal officials say the changes required by the consent decree are a matter of civil rights. Implementation of the decree, overseen by a U.S. District Court judge, a federal court monitor, and DOJ lawyers, is designed to correct violations of Title II of the Americans With Disabilities Act, which gives all those with disabilities the right to access services in their communities.

Rep. Cale Keable, D-Burrillville and Glocester, chairman of the House Judiciary Committee, emphasized the importance of the turnout in sending a message about the large numbers of people affected by the developmental disabilities budget.

“As lawmakers, we try to allocate our scarce resources to seemingly unlimited problems,” he said, but “we all must remember our priorities.

“We are all Rhode Islanders, all human beings. At our most fundamental level, we have a basic obligation to look out for one another. “

He asked the audience to help him advocate for the funding they need for services and for the raises their caregivers deserve for all their hard work.

A coalition called Rhode Islanders In Support of Individuals With Developmental Disabilities said in a statement that most direct support workers in Rhode Island make just over $11 an hour, while Massachusetts and Connecticut have negotiated a minimum of $15 an hour for those who do the same work.

The coalition includes the New England Health Care Employees Union (District 1199 of the Service Employees International Union), the Rhode Island Federation of Teachers and Health Professionals, The United Nurses and Allied Professionals, the International Association of Machinists and Aerospace Workers, and others. 

Some of the umbrella labor organizations in the coalition represent both direct care workers in the private sector and public sector employees  – including those employed in state-run group homes – who just negotiated a cumulative 7.5 percent wage increase by Jan. 1, 2020, some of it retroactive to Jan. 1.  

The coalition announced a social media campaign calling on lawmakers to increase Rhode Island direct support wages to $15 an hour this year. The coalition supports companion bills in the House and Senate that would do just that. The legislation is sponsored by Rep. Evan Shanley, D-Warwick, and Sen. Adam J. Satchell, D-West Warwick.

If a $15 floor on wages is not enacted, the General Assembly should couple an overall increase in developmental disability funding with a directive that some of the money go to raises for direct support workers, at is has in the past, said Jim Parisi, a spokesman for the coalition.

“We’re happy the Assembly is planning to restore the budget cuts, but we still think the raises are important,” Parisi said May 24. The depressed wages among direct care workers in the private sector are a “long-term problem” that must be corrected, he said.

As a matter of strategy, DiPalma, the vice-chairman of the Senate Finance Committee, has favored a more gradual approach, launching a “15 in 5” campaign in 2016 to reach the $15 mark in five years.

There have been three small raises for direct care workers in each of the last three budgets, including the current one, but the minimum wage has also gone up. Since 2012, the minimum wage in Rhode Island has increased 30 percent, while direct care wages have risen only 1.8 percent, according to figures compiled by CPNRI, the trade association of service providers that sponsored the rally.

CPNRI favors introducing a proviso in state law that would trigger an increase in pay for direct care workers anytime there is an increase in the minimum wage. 

Donna Martin, executive director of CPNRI, summed up the issues affecting individuals with intellectual and developmental challenges, their families, and service providers:

“We all face increasing unfunded costs of doing business, staff wages declining in value against inflation, staff working multiple jobs to make ends meet, service providers struggling to recruit and retain qualified staff, families unable to access services due to workforce issues.“

 “I’m hopeful the excitement and commitment expressed here today will carry forward to future budget cycles and that our leaders will support the policies and investments needed to ensure that all Rhode Islanders with IDD (intellectual and developmental disabilities) will be able to take their rightful place in our community,” Martin said.

At the rally,  CPNRI distributed background information on the funding issue, including statistics showing that Rhode Island lags behind neighboring Massachusetts and Connecticut and below the national average in spending on adults with developmental disabilities.

Rhode Island’s average spending for residents of group homes with six or fewer residents was $114,973 per person in 2015, the latest year for which figures are available, according to the State of the States in Developmental Disabilities Project at the University of Colorado.

That figure includes state-run and privately operated group homes.  When only private providers are considered, the average per-person cost is about $60,000, according to CPNI’s own calculations. 

The State of the States project, meanwhile, reports that the average per person spending nationwide in group homes in 2015 was $129,233.

Massachusetts spent $170,682  and Connecticut spent $173,067 per person in group homes with six or fewer residents.  

Those numbers don’t tell the whole story, said Tom Kane, CEO of AccessPoint RI, a member of CPNRI who has presented the figures to both House and Senate finance committees.

In 2015, Massachusetts and Connecticut spent an average of $287,434 and $403, 496 per person, respectively, on those with intellectual or developmental disabilities living in institutions, according to the State of the States project. The national average was $256,400

But Rhode Island spends nothing in this category – facilities with 16 or more – because it closed its institution more than 20 years ago, Kane has testified. Rhode Islanders who in neighboring states would be institutionalized are instead living in their communities at significantly lower cost, Kane has testified.

The restoration $18.4 million to the developmental disability system would restore the status quo, but to stabilize services and move forward the state should invest an additional $15 million, Kane has said.

The currently enacted developmental disabilities budget is $25.9 million, almost all of it Medicaid funds reimbursed at a rate of about 52 cents on the dollar by the federal government.

Raimondo would raise the budget to $272.2 million to cover an existing deficit as a one-time event before imposing the cuts that she now says she would restore. .