Fears Easing About Relocations From Pennhurst

Posted: March 09, 1987

Bringing up Kenny was always a full-time job, rife with worry and focused on the future.

It is not much different now that he is an adult, a grown man with a child's mind.

Twenty-five years ago, the thought of institutionalizing him appalled his parents. Last fall, the idea of deinstitutionalization was nearly as upsetting.

"I was on pins and needles," Kathryn Myers said, recalling the period just before her son was moved from the Pennhurst Center - the Chester County complex for the mentally retarded that was ordered shut in a landmark 1985 court decision - to a CLA, a Community Living Arrangement. "Kenny was not used to changes. He was used to repetition. I was very upset about the transition."

Nor was Kathryn Myers alone. On the day of the court order, which ended a 10-year legal battle, Pennhurst still had 1,154 residents; only a handful remain. With relocations nearly complete, studies indicate that family fears, shown to be significant prior to relocation, appear to have lessened.

According to Celia Feinstein of Temple University, who conducted a five- year study designed to determine whether ex-Pennhurst residents were benefiting from their move into the community, family attitudes alter after relocation.

Of 472 families surveyed prior to relocation, which began before the court order, 72 percent opposed community living for their family members. Of the 134 families surveyed following relocation, all were as satisfied with the CLAs as they had been with Pennhurst.

"The one strand that remains is the fear about permanency," said Feinstein, who is director of monitoring and quality assurance for the Temple Developmental Disabilities Unit. "The bricks and mortar represented by Pennhurst stood for (permanency), as opposed to 'that apartment down the street that may be gone next week.' "

On Oct. 31, Kenny Myers' departure day, fewer than 60 residents remained at Pennhurst awaiting appropriate community housing. In general, according to Temple's Feinstein, those whose cases were easiest to manage left first, on the theory that "the higher-functioning an individual is, the more they would benefit from being in the community."

For Kenny, 38, the transition went far smoother than his mother had imagined. She had prepared him for it, describing the "nice little house" where he would live and explaining, "They're locking the doors at Pennhurst" - the way she used to tell him, as a child, that "the mall is locked" if she did not want to go there.

By all accounts, Kenny has adjusted well to the small group home in Newtown Square, Delaware County, where he has lived since leaving Pennhurst - "He surprised us all," his case manager said - but thoughts of the future still make his mother uneasy.

She worries about long-term funding for the mentally retarded, about staffing and services for CLAs, about the longevity of Kenny's living arrangements. She is 68; her husband, Kermit, is 76. She wants to know that her son's future is secure.

According to the Temple report - the Pennhurst Longitudinal Study, released in 1985 - a majority of families with institutionalized children opposed having them leave Pennhurst. It gave several reasons, including the fear that in "less restrictive" settings, their children would face an increased risk of harm or abuse. The process of deinstitutionalization also represented a ''painful revisitation" of their decision to institutionalize their family members.

Regarding concerns about the future, the study noted that permanence is ''linked to funding and the duration, amount, source, and intent of that funding." The funding for CLAs, it said, has traditionally come from states, short-term federal grants or both, as opposed to the longstanding federal commitment to support institutions.

"For a family whose concern is that their relative be housed, fed, and clothed in the year 2020," the report noted, "institutional funding may appear to be a safer bet than CLA support."

Steve Chafetz, Delaware County's mental retardation coordinator, discounted the likelihood of dwindling funds for the mentally retarded, saying that is ''not on the near horizon," and that, in fact, "every indication is that more and more dollars" will be spent on them. With the trend toward phasing out institutions such as Pennhurst, federal and state money formerly earmarked for institutions will be funneled to community group homes, Chafetz said.

A more realistic worry, he said, concerns the staffing of such homes, in part because low salaries - starting at about $11,000 a year - make it difficult to attract help. The growing number of group homes in recent years has exacerbated the problem, he added, as has a decrease in the number of people entering the human services field.

"Training and salaries are going to have to be upgraded," Chafetz said, ''and I predict it will happen." The growth in the number of homes will lead to a push for improvement, he said.

For the most part, Feinstein said, the use of group homes has brought about changes in parental attitudes about deinstitutionalization.

"The most striking result of the family survey," the report said, "was the overwhelmingly positive change in attitudes among the families" whose children went into the community.

Faced with Kenny's relocation, Kathryn Myers found herself reliving the events leading to his institutionalization at Pennhurst so many years earlier.

Her first clue that something was wrong with her second son came when he was about 4 months old, and she noticed that his eyes occasionally would roll back. It was unsettling but not alarming, and she allowed Kenny's doctor to reassure her. Then one day, when Kenny spit up his formula, his lips turned white.

Subsequent tests indicated seizures. Later testing showed Kenny to be profoundly retarded.

His mother adjusted her days to conform to his needs. Each day, for seven years, she drove him to and from the Delaware County Association for Retarded Children in Lansdowne, for playtime and the companionship of other children.

At home, the Myers' fenced their back yard to keep Kenny from straying - an unnecessary precaution, they learned. He was a loner, a fearful child who would quietly watch his brothers play on the swings and in the sandbox.

In those days, "He wasn't giving me problems. I'd pick him up (at the training center), and he'd watch TV, help me set the table, go to bed. I'd teach him his prayers. He still knows his prayers to this very day."

His parents resisted institutionalizing him until 1961, by which time he was 13 and unmanageable.

"He'd run, dash, turn in circles," his mother remembered. "He wasn't destructive in the house, but he got into such a routine that it affected the whole family. It got to the point where we said, 'Let's not do this because Kenny will get upset.' "

Kermit Myers used to get home from his job at Alloy Wire Works at 4:15 each afternoon. Then he would go into the basement, remove his heavy work shoes,

put on slippers and go upstairs to greet his family. When Myers failed to adhere to his routine precisely, Kathryn Myers said, Kenny got extremely agitated, yelling and tugging his father down the basement stairs, intent upon having him follow each step of his established pattern.

Ultimately, it was Kermit Myers' health that forced the decision to institutionalize Kenny. In 1961, Myers underwent extensive surgery for colon cancer; he subsequently had a nervous breakdown. Kathryn Myers took a series of part-time jobs to support the family. Between working and caring for her husband and Kenny, she reached her limit.

"My doctor said, 'Kathryn, you're gonna have a nervous breakdown,' " she recalled.

As untenable as it was having Kenny at home, the decision to send him to Pennhurst was devastating to his family. All these years later, his mother dissolves in tears recalling the August day when she sat on her front porch in Holmes, Delaware County, and read the institution's letter of acceptance.

Shortly before Kenny left Pennhurst, his county case worker, Ann Drobot, wrote a 27-page Transitional Individual Habilitation Plan (TIHP) for him, a

procedure followed for every resident who is relocating.

Kenny's TIHP summarized his condition, noting his behavior ("hyperactive and abusive behavior problem; Kenny can be loud and demanding") his medications, his physical characteristics (weight, 146; height 5-feet-8- inches; missing several teeth; the loss of all hair at age 11), and long- term goals ("establish a morning and evening routine; participate in routine daily housekeeping chores").

According to Drobot, who monitors Kenny's progress monthly, and Kerry Hathorn, the live-in supervisor of the cottage Kenny shares with another retarded man, Kenny appears to be meeting his goals. He now lays out his own clothes each night, takes his bath independently, sets the breakfast table and has begun learning to iron.

Hathorn finds his work "mentally wearing" but also "very rewarding."

"You develop a rapport with these guys, and it's rewarding to see them make even one little step."

Said Temple's Feinstein, whose monitoring of former residents is state- mandated until 1993, "As long as there are people out there watching, I think everybody's going to be well-served and fine."

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