Service to the least of us

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Proud to be a member of the generation that saw the closing of Ladd School, it was with great pleasure that that I feted living in Rhode Island, the first state in the county to pioneer the closure of the anti-humane housing of individuals with developmental delays and other disabilities. During the previous decades, many obstetricians and pediatricians urged new parents of such a child to “put them away”, as though damaged children were not children at all. Often times, the parent was not allowed to see the child, and encouraged by the doctor that they could have other children, “real” children.

This nightmare occurred in my family after my mom gave birth to a son with Rubella Syndrome. When pregnant, she had unknowingly come into contact with someone with German Measles, which in and of itself should serve as a cautionary tale for those parents who choose not to vaccinate their children. My brother was deformed, blind, hearing impaired and severely developmentally delayed. Her obstetrician tried to coerce her to place him in the institution because he would require total care and would “ruin her life.”

My mother, a shy and respectful person, agonized over this decision, ultimately went against the doctor’s orders and asked to see her infant. Upon gazing unto his misshapen face with a huge cleft palate, floppy elephant-like ears, and deformed appendages, she affirmed that he was none-the-less her son, and she would do everything possible to care for him at home. She knew that her decision was against the norm, and her heart wept for all of the other parents who had to make such a decision. He was a loved member of our family, and was able to do many things that he enjoyed such as drinking Diet Coke and riding the escalators at the malls. He loved listening to music through headphones, and usually rocked back and forth to the beat. He was happy and we were happy to care for him.

My first job interview with the state was to be a social worker at Ladd School. I knew of the facility, but never really KNEW the facility until I toured it. The “dormitories”, as they were called, were reminiscent of concentration camps such as Auschwitz. The “residents” were treated like animals, moving beings of no consequence. As many as 30 cots would line a room, with several residents tied to them, arms and legs askew, clothing optional. The “activity room” was made of cement, with a huge drain in the middle to accommodate the feces and urine of the residents. The only activity I saw was sitting and moaning, rocking and pulling at hair, and screeching. I could not work in such a facility without feeling sick to my stomach every day, so I chose a different social worker position.

It was during the early years of my employment that dedicated advocacy groups and legislators began the difficult work of deinstitutionalization. Because so many neighborhoods lamented they did not want a group home among them, legislation was enacted that 4 people living in a home with support staff would be legal anywhere in Rhode Island. Small group homes sprung up like blossoming flowers, and, one by one, the residents of Ladd School joined the land of the living. In 1986, Governor Edward DiPrete announced the closure of the antiquated behemoth that had housed our most vulnerable citizens.

Today, there are many dedicated agencies that provide care for individuals with cognitive delays. Using home support services, day programs, work activities, group homes, and a type of adult foster care, these members of society finally have a life of their own. They are no longer relegated to a back ward where the only sunlight they see comes from a tiny window high up. They have a real bedroom with curtains and a bed with sheets and blankets. They wear clothes of their own choosing, go swimming at local pools, window-shop at the malls, eat out in local restaurants, and live a normal life. They are happy.

Currently at issue is a projected state budget cut of approximately $18 million dollars for services for the developmentally delayed. This type of cut is unsustainable. Ninety percent of agency budgets cover staffing. Dedicated staff, many with college degrees, are paid only a few dollars above minimum wage. For this amount of money, they are expected to care for all of the residents’ needs, which can include toileting, dressing, bathing, and feeding. They provide daily outings to allow everyone to enjoy an active life in his/her community. With a budget cut, there would be less money for staff, and finding people willing to sacrifice a financially rewarding occupation to work with those less fortunate would be much more difficult. The level of care, as mandated by state and federal regulations, might no longer be possible. This is a crucial juncture at which Rhode Island, with such a history of advocacy and compassion, must continue to provide care for our most vulnerable constituents.

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