By Gina Macris
While a federal judge is poised to compel the state of Rhode Island to comply with a federal consent decree intended to benefit people with developmental disabilities, the General Assembly, which holds the purse strings, does not appear to have a full understanding of the matter.
Donna Martin, executive director of a network of private disability service providers, expressed that concern March 15 at a meeting of the Employment First Task Force (EFTF), created by the 2014 consent decree to reach out to the community and to make recommendations as the state tries to implement the federal court order.
More than two dozen people, including Nicole Zeitler and Peter Stephan, lawyers for the U.S. Department of Justice, attended the task force meeting at Martin’s office at the CommunityProvider Network of Rhode Island (CPNRI) on Jefferson Boulevard in Warwick. The task force is chaired by Kevin Nerney, assistant director of the Rhode Island Developmental Disabilities Council.
The two DOJ lawyers had appeared at a hearing in Providence the previous day before U.S. District Court Judge John J. McConnell, who displayed a growing impatience with the state’s piecemeal compliance and affirmed a schedule for considering remedial action in April.
Martin said, “I’m concerned about what’s going to happen after the evidentiary hearing and how the executive branch moves from the fallout of that without the full understanding of the legislature.“
McConnell is to hear evidence on compliance April 8 to help him shape a new court order for a remedial action plan.
“It concerns me that the consent decree is silent” on funding, Martin said. “That puts the onus on the advocacy community. The burden the developmental disability community is facing far predates the consent decree,” she said. “When the dollars are not appropriated, our hands are essentially tied.”
Martin was alluding to a 13 percent cut in the developmental disabilities budget the General Assembly made in the early hours of the morning on the last day of the 2011 session. The budget has not recovered the lost funding, while the caseload has grown in the last five years.
“While I understand that there are separate branches of government, I’m concerned that there is not a stronger coordinated voice with the legislature,” Martin said.
Ray Bandusky, executive director of the Rhode Island Disability Law Center, said, “I think it’s important to emphasize that the overwhelming majority of legislators abhor consent decrees. I don’t see it being a big motivator.”
The DOJ’s Zeitler said that “the consent decree doesn’t specify how it is to be funded,” but it does say that it will be “fully funded.” The agreement was signed in 2014 by former Governor Lincoln Chafee and DOJ officials.
In January, state officials acknowledged that the budget does not now contain enough money to implement the court order.
Zeitler said that the state promised McConnell it would show him budget numbers that are linked to compliance results for specific individuals affected by the consent decree. “We didn’t come up with that out of nowhere; It came from the consent decree,” Zeitler said.
“We are waiting for a usable summary” of Governor Gina Raimondo’s proposed new budget; something that goes beyond the executive summary she included in her budget message to the General Assembly in early February, she said.
The consent decree says funding is supposed to be built around the needs of the individual. In that context, Zeitler said it is “helpful to hear” from consumers who might say, “I ended up getting my tier (funding level) changed and it didn’t have anything to do with my needs.”
In between their appearances in court and at the public EFTF meeting, Zeitler and Stephan have met privately with people receiving services and with family members.
Funding hinders individualized services
The current funding structure hinders the community integration and personal choice that is at the center of the consent decree, because it is driven by ratios and has no flexibility to accommodate people’s needs, Martin said.
To illustrate her point, Martin gave a hypothetical example of a day facility with a staff-to-client ratio of 1 to 8. If one staff member accompanies a person with a disability somewhere, that leaves another staff member with a double ratio of clients, Martin said. .
In other words, one person’s integration comes at the expense of another’s need for staff attention.
One parent said pressure from the consent decree to close segregated day facilities like the one in Martin’s example is resulting in groups of people with disabilities riding around in a van or car when one of them has to go somewhere.
“The day center has become mobile,” said Mary Beth Cournoyer.
“It looks like we’re following a path (toward community integration) on paper, but we don’t get there,” Cournoyer said.
She also indicated that the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) continues to determine an individual’s funding level through an assessment that was never designed for that purpose.
The consent decree specifically prohibits the state from using the assessment, called the Supports Intensity Scale, as a funding tool.
Cournoyer said it would be “enormously helpful to identify the roles and responsibilities of the task force.”
The group, hampered by fragmented communication from state agencies and a lack of data needed to formulate policy recommendations, has struggled to define its role over the last two years.
Cournoyer said individuals with disabilities either are not being informed or are misinformed about changes that affect them. “Parents are screaming that they are going to take the money away,” she said.
Zeitler said, “There are amazing people in this room. I have heard all of you talk. I have every belief you can use the power you have.”
The consent decree says the Employment First Task Force “should include certain people, and more than half of you are advocates and parents,” Zeitler said, scanning the room. “Our position is that the state should be taking information from the task force and using it to change systems,” she said.
The group welcomed Mary Madden, the interim consent decree coordinator, who spoke about her approach to the newly created secretary-level position.
Madden, with 30 years’ professional experience in developmental disabilities in Rhode Island, has become widely respected in that field.
She said that while she will work toward the compliance goals spelled out in the consent decree, “the greater goal we should care about is inclusive lives for people in the community.”
She said she hopes to bring people from various departments of state government together“to work seamlessly as a team.”
The DOJ and the court monitor have argued that the consent decree calls for a coordinator with the clout to require cooperation from department heads.
Martin of CPNRI said her organization is pleased that the coordinator’s position has been moved outside any department of state government. “It’s difficult to effect change in departments that continue to be very siloed” when the coordinator’s position remains within one department, she said.
Before Madden’s appointment, the coordinator’s position was assigned to BHDDH. The former coordinator, Andrew McQuaide, now serves as Chief Transformation officer at BHDDH.
Madden said, “I want to do a job that matters and has impact. I’m an action-oriented person. I’ve never worked for state government; just the private sector. When something needs to get done, you just do it,” she said.
Even so, Madden said, she is sure she will encounter bureaucratic situations. She also said “there are a lot of things about this position that are unknown and haven’t been hammered out.”