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Publisher of Warwick Beacon Meets with Care Providers for Individuals with Developmental Disabilities and the Citizens They Serve

 

March 15, 2012 [Warwick] West Bay Residential Services, a care provider for individuals with developmental disabilities, was the scene last week of emotional testimony as John Howell learned what $24 million in funding reductions means to local residents of group homes.

Howell, publisher of the Warwick Beacon, Cranston Herald and Johnston Sun Rise newspapers, heard statements, both prepared and improvised, from residents of three Warwick-based care providers, West Bay Residential Services, Gateways to Change and Community Living of Rhode Island, their families and their direct care staff. Howell was well versed on the subject and brought his many years of experience to the table, speaking and listening to the meeting.    

“I think people have been lulled by the success of places like this,” Howell said of the move away from state-run institutions and toward residences and day programs. “Deinstitutionalization worked therefore there’s no reason to be concerned about it,” he added approximating the public’s complacency.    

At stake for care providers and the individuals they serve are $24 million in fiscal year 2011 funding reductions. Considering Rhode Island’s total state budget of $7 billion, reasoned several in attendance, “this cut was too deep.” Now the target of forceful pushback and intense scrutiny, the reduction may be on its way to being partially reversed.

Organized by Rhode Island State Representative Scott J. Guthrie, several lawmakers have introduced legislation that, if passed, would restore a portion of the funding and assuage some of doubts and fears offered in the meeting.

“The loss of this funding,” said West Bay Residential Services Assistant Director Kathleen Millard, “is the loss of independence to our residents, loss of wages to our staff and the loss of financial reserves we once could save for a rainy day.”

Millard indicated that the tendency to rely on savings in the name of continuing the level of care the public has come to expect is not unique to West Bay Residential Services. Residents and staff from Gateways to Change and Community Living of Rhode Island echoed Millard’s concerns stating that care and services have been stretched beyond their limits and that next year, faced with similarly unsustainable funding levels, things are going to get worse before they get better.

Gateways to Change resident Kara Courtemache, in a wheelchair and unable to speak since an injury she sustained as a junior at East Providence High School, prepared a statement using an iPad. Danielle Allen of Gateways to Change read Courtemache’s statement, beginning a series of sincere, often emotional pleas for fairness and understanding.

“I was born perfectly fine until a car accident changed my life forever,” she said. “My staff are a very important part of my life. They help me shower, get my clothes on, help me in and out of my wheelchair and cook me delicious food.”

Courtemache’s words foreshadowed similar concerns held by the well-attended gathering; concerns that further service interruptions and eliminations will cause intolerable flux in an already vulnerable community. Unable to finish high school after her accident, Courtemache has had to stop taking G.E.D classes, a direct consequence, according to her statement, of funding reductions.

Another Gateways to Change resident, Mary-Elizabeth Towne, spoke with the aid of an eye-gaze board, a tablet that displays the letters of the alphabet. Held by her direct care staff Michelle Rhau, the board allows Towne to spell out her words using her eyes—up for “yes,” down for “no”—as Rhau pointed, recording the results with pen and paper.    

“I am a nonverbal resident of Warwick,” Towne said. “I suffer from spastic quadriplegia with hypothyroidism. I also have a history of brainstem injury.” Though delivered as unconventionally as Courtemache’s, with the aid of support staff, statements like Towne’s established a common theme that continued as the gathering gained momentum.

“I need help with all aspects of daily living,” Towne continued. But according to her statement, she just wants to participate in activities everybody else takes for granted. “I enjoy listening to music, going to the bookstore and spending time in the community.” Funding reductions have meant fewer opportunities to accomplish her reasonable goals.  

“I have lost my favorite staff and I don’t know if they’re going to come back,” said tearful Community Living of Rhode Island resident Sally Scott. “I’m scared about what will happen to me and my roommates.”

Scott’s worries were shared by Elaine Clemm whose daughter Heather requires 24-hour support. “She can’t do anything by herself and I trust West Bay,” Clemm said of the staff.

“They take care of her every single day,” she emphasized. “I love them.”

Jim Petrone, who communicates with the aid of a speech output device, lamented the inability of one of his roommates to participate in community service and volunteer programs as a result of the budget cuts. Petrone is a West Bay resident who currently assists a speech therapist at the Meeting Street School in Providence, a weekly volunteer position that depends on transportation threatened by the funding reductions.

James Boucher, a group home resident who was recently elected president of the West Bay Board of Directors summed up the astonishment in the room. “All these cuts—personally, I feel like it’s not fair,” Boucher said. “What did we do?”