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Fifty years ago, most of Massachusetts' developmentally disabled residents lived in frequently undermanned and occasionally abusive state institutions.

But beginning in the 1950s, families in the Bay State and around the country began demanding something better for their loved ones, who were then referred to primarily as "mentally retarded."

The result was the start of a process called deinstitutionalization, which was intended to allow the disabled to live in their own communities and receive support and educational services through local schools and public and private agencies.

"When our daughter was born, we were told there was no hope," said Attleboro resident Fred Proulx, whose wife, Ada, gave birth Ann Marie, a Down syndrome child, in 1954.

After first being urged to send their newborn to a special school, they took the advice of a doctor to bring their child home and "see what happens." Despite the prevailing practice at the time, the Proulxs were determined to raise Ann Marie, the third of their eight children, at home.

But, like other parents of developmentally disabled children back then, they would soon discover that there were virtually no schooling or other services available for their youngsters in the community. They, along with other parents, would have to invent their own.

Within a few years, the Proulxs became a part of a small group of parents of developmentally disabled children. Fred became the first president, and early meetings were held around the Proulxs' kitchen table and in the homes of other members.

Formally organized in 1959 as the Attleboro Area Association for Retarded Children, the group became part of a pioneering, nationwide organization demanding educational and rehabilitation services for disabled children.

The local group, which has since evolved into the ARC of Northern Bristol County, will mark its 50th anniversary Thursday with a celebration at Lake View Ballroom in Foxboro.

By banding together, families learned what the experts had thought impossible: That with love and support their children could not only survive, but live meaningful and happy lives.

Ann Marie, who died at age 38 of cancer, regularly played as a child with other children in the neighborhood, attended school and as an adult held down a light assembly job.

A sports fan, she was an avid follower of the Boston Bruins. She loved to hook rugs and could copy virtually any design she saw. She was also a fun-loving child who never lacked for playmates in a large and growing family.

"Ann Marie was a blessing," Ada Proulx said.

For Ann Marie and hundreds of others, the ARC has also been a source of hope. The ARC of Northern Bristol County now acts as advocate for more than 1,200 disabled citizens and their families from 14 communities, said President and CEO Michael Andrade.

The group provides residential and family support, guardianship assistance, information and referrals, recreational and educational support to disabled citizens.

An offshoot, Attleboro Enterprises, provides vocational and life skills training and employment to the intellectually handicapped.

While many more developmentally disabled people live at home now than in institutions, progress was a painful and gradual matter, Andrade said.

Prior to the 1930s, what little help there was for families with disabled children was provided through local poor houses or religious organizations.

"As an alternative, a family that wanted to bring their child home might keep that child in their room, where they were rarely, if ever, seen," Andrade said.

Sending a child to a state-run school or institution became the conventional wisdom. At one time, expansive state institutions were home to thousands, although that population has now declined to about 900, according to the Massachusetts Department of Health and Human Services.

With modest budgets and little public oversight, such institutions were frequently less than showplaces. Allegations of neglect and even unauthorized experiments on patients were not unknown.

During the 1960s, a medical study at the Willowbrook State School on Staten Island, N.Y., intentionally inoculated healthy but mentally disabled residents with the hepatitis virus. That and other scandals were exposed in two New York newspapers and later repeated on network TV by investigative reporter Geraldo Rivera.

In a well-documented experiment at the Walter E. Fernald State School in Massachusetts during the 1940s and '50s, retarded children were intentionally fed radioisotopes as part of a study on the absorption of calcium and iron. The experiments included scientists from two prestigious universities.

The school was also the subject of reports of sexual and physical abuse.

"Unquestionably, some terrible things occurred in institutions," Andrade said.

Exposed to the litany of horrors, more parents began pulling their children out of large institutions. But finding options was hard.

With few or no alternatives in their neighborhoods, groups like the ARC began raising their own funds to sponsor their own nursery schools, summer camps and recreation programs and joined a growing movement to demand that public schools provide educational opportunities approximating those for non-handicapped children.

With support from ARC parents, Attleboro Public Schools started the city's first "special" class at the Willett School.

In the 1970s, the state moved toward upgrading services for the developmentally disabled as a result of a series of federal court cases.

Under the supervision of U.S. District Judge Joseph Tauro, the state eventually consented to bring its six developmental centers up to federal standards and to provide care in less restrictive community settings.

After pioneering their own educational programs, including a nursery school at Murray Universalist Church, swimming programs at the YMCA and a summer camp at Wheaton College, ARC members could take pride in Chapter 766, Massachusetts' first in the nation law requiring that schools provide classes and educational plans for children with disabilities.

Families and advocacy organizations like ARC had been in the forefront of demanding educational services.

Other individuals and organizations rallied to the cause of providing more enlightened, community-based services to the developmentally disabled.

The Kennedy-Donovan Center, founded by Kennedy family nurse Luella Hennessey Donovan, began providing educational services to developmentally disabled children in 1969. The organization, headquartered in Foxboro, now serves about 5,000 families a year.

The Kennedy-Donovan Center, which recently celebrated its 40th anniversary, also provides foster care training and a variety of services for adults, including family and residential support.

As their children began to grow older, local ARC members and parents elsewhere began to think about the future.

What would happen to their children, they asked, once they had exhausted the services schools were required to provide? How would the children earn a living and survive well into adulthood once their parents had died?

Such questions led to the formation of Attleboro Enterprises, initially a part of ARC, that split off in 1979 and continues to support vocational and life skills training, as well as providing partial employment for the disabled.

Housing is now increasingly provided in supervised group homes and community residences, instead of state-run dormitories.

Gathering major momentum during the '70s, the deinstitutionalization of the mentally disabled continues under the administration of Gov. Deval Patrick.

The governor has already announced plans over the next four years to close four of the six remaining facilities for the mentally and intellectually disabled and move 400 residents to community-based group homes.

The plan would not include the Wrentham Developmental Center, which would be retained for long-term care.

But those plans and other aspects of deinstitutionalization continue to be dogged by controversy.

The Supreme Judicial Court recently declined to review a lower court ruling that upheld the latest consolidation, which had been challenged by parents who contend that the remaining facilities - now vastly improved as the result of a series of of court decrees - are still the best option for their children.

Colleen Lutkevich, executive director for the Coalition of Families and Advocates for the Retarded, says the plan is too aggressive to prosecute effectively. She says COFAR parents aren't against deinstitutionalization as a concept, but believe options are needed for those who would benefit from other approaches.

"We don't have a problem with community settings," Lutkevich said. "But we think there is a minority who need a different level of care."

Patrick maintains that closing the underused facilities would save money that would better be used to aid the state Department of Developmental Services' 32,000 other clients.

Key to the initiative would be reinvesting $45 million from the six facilities' $164 million budget in community-based services.

Other parents remain vocal about the limits of deinstititutionalization.

In May 2008, 43 families of profoundly retarded and medically disabled residents of Seven Hills Pediatric Center in Groton learned that the state was recommending moving most of the residents to group homes as the result of a court settlement.

Families argue that the settlement, intended to allow the severely handicapped to return home, should not apply to their loved ones, who, they say, might not be able to survive in group homes.

They also say they were never informed of the lawsuit's potential impact on their children when it was going through the court system.

Louis Putterman, whose daughter is a resident of Seven Hills, said families are appealing the settlement in the U.S. Circuit Court of Appeals.

He said the state has yet to provide a timetable for the proposed move.

"We can't live with this situation," said Putterman, who added that other families also are distressed by the uncertainty.

U.S. Rep. Barney Frank has filed a bill in Congress seeking to require that plaintiffs in lawsuits notify all who might be affected by their legal action - not just those who sign onto the lawsuit.