Advocacy groups calling for increased funding for services for the retarded in community settings say a federal judge's order to keep the nation's oldest state institution up and running is unfair.
"We really want quality environments and quality lives for all people with disabilities," says Susan Nadworny, chairwoman of the Massachusetts Families Organizing for Change, a grassroots coalition of advocates for the developmentally disabled and their families.
Nadworny's group was dismayed to hear about U.S. District Judge Joseph L. Tauro's ruling Tuesday, which ordered the state to keep the Walter E. Fernald Development Center open for those residents who want to stay.
"We're urging everyone to make phone calls to the governor's office and ask for an appeal," said Nadworny, who has a 16-year-old son with Down syndrome.
Since then-Gov. Mitt Romney announced intentions to close Fernald in 2003, guardians of Fernald residents have fought to keep it open. The state says maintaining the 196-acre campus on Trapelo Road is costly. The facility, which once housed a population of 2,000, now has about 180 aging residents.
Tauro's ruling ordered the state to include Fernald as an option when discussing transferring current residents. Opponents of keeping Fernald open say the facility drains resources for the disabled. The Department of Mental Retardation serves 32,000 people statewide, and less than 1,000 of those are in the six remaining institutions.
Keeping Fernald open costs $259,000 a year for each resident including the cost of services, personnel and fringe benefits, according to DMR spokesman Juan Martinez.
"The state has not yet made a decision on whether to appeal (Tauro's decision) or not," Martinez said yesterday.
Meanwhile Nadworny says services for disabled people like her son are underfunded in the community. She said the families are receiving about $55,000 per person to care for developmentally disabled loved ones according to the last fiscal budget.
"It's just not fair," Nadworny said. "To have a federal judge make a decision for a state like that, I think it should be beyond his scope."
Arc of Massachusetts, another advocacy group, has long called for Fernald's closure and the transfer of residents to other facilities or community homes.
"The reality is that people are looking for homes in community services, there's new investments that need to be made in the community," said Leo Sarkissian, Arc executive director. "This decision sets things back possibly 15 years."
Sarkissian says Tauro's ruling, if left standing, could set a precedent that would make it difficult for the state to close other state institutions to consolidate resources. The judge's ruling, he said, did not address several arguments filed in court, including one by Arc, regarding the availability of "equal or better" services as required by law for residents transferred outside of Fernald.
Those who fight to keep Fernald open say money is a feeble argument for forcing out residents who have lived there since childhood. Tauro's involvement with the state's care of the disabled comes from a 1993 consent decree issued after 20 years of overhauling living conditions for residents at state institutions.
Colleen Lutkevich, executive director of the Coalition of Families and Advocates for the Retarded, was among the group of plaintiffs who fought in the landmark 1970's Ricci v. Okin case where complaints were filed on behalf residents citing "inhumane conditions" in institutions. The case led to the 1993 consent decree and guaranteed individualized care for every resident that must be equal or better elsewhere if they are ever transferred from the institution.
Lutkevich, whose sister resides at Wrentham Association, says the cost of caring for the remaining Fernald residents would be the same if they were transferred because the state would need to build homes and provide comparable services to what they currently receive.
"They (residents and their families) won a landmark lawsuit and they didn't win any money, what they won was equal or better treatment for the rest of their lives," Lutkevich said. "We're talking about people who are 80 years old. Equal or better does not mean having to be evicted."
Lutkevich says the state has other options for saving money, including consolidating the Fernald campus and selling off some of the land. She also suggested putting up new buildings at the site to house the remaining population, to keep together staff and residents who have been there for decades.
"You have a community (at Fernald) that you cannot create somewhere else," she said.
Nicole Haley can be reached at nhaley@cnc.com or 781-398-8004.
