THE FRAYING SAFETY NET: CARING FOR THE MENTALLY RETARDED SECOND OF TWO PARTS Pennsylvania spends millions each year caring for its most vulnerable citizens. Today, the Post-Gazette looks at another category of those people, the mentally retarded, in the second of two stories. Pennsylvania is one of nine states which do not have laws to protect disabled adults under age 60. The Legislature now is considering a proposal to extend protective services to people ages 18 to 59. MORE COVERAGE Family of four mentally disabled siblings rescued from 'death trap' Previously in this series In Pennsylvania, the mentally retarded spill into loosely monitored care Waging war on addiction Social safety net is unraveling

One Beaver County family referred to their 19-year-old mentally retarded foster daughter as "the mortgage baby" because they used her monthly Social Security check to make the house payment. She was kept in the basement, with only a cot and a portable toilet.

In Lehigh County, officials learned last month that a relative had moved a mentally retarded man there from out of state under suspicious circumstances, and the two were living in a condemned house.

A 90-year-old Philadelphia woman once had kept her 65-year-old retarded son indoors for 12 years.

In each of these situations, officials knew, or at least strongly suspected, someone with significant mental impairment might be in danger.

In each case, they could do little.

That's because Pennsylvania is one of nine states without laws to protect disabled adults under 60, according to the Wisconsin-based American Society of Adult Abuse Professionals and Survivors.

Simply put, that means, without permission to enter a home, without an expressed wish by the disabled person to leave, police and social workers cannot intervene.

"There are [protection] laws for the children, and there are laws for older adults, but this age group falls through the cracks," said Ray DuCoeur, administrator of the Westmoreland County Area Agency on Aging.

"If someone calls about a person's well-being, we will go out and try to talk to that person, or anyone else involved. But if that person won't let us in, we don't have the authority to have the police help us get in. Unless we can talk them into it, we may never find out if they're at risk."

Reps. Larry Sather, R-Huntingdon, and Mike Veon, D-Beaver Falls, are trying to change that with proposed legislation extending protective services to people 18 to 59 years old.

The bill, introduced Thanksgiving week, would require an investigation within 72 hours of a report, sooner if circumstances warrant. If abuse or neglect is found, a local provider will do an assessment and prepare a service plan to move the person to "the least restrictive alternative, encouraging client self-determination and continuity of care."

If necessary, the agency can petition the court for access to the person. Once the petition is granted, the agency can forcibly enter a home to check on the person's welfare.

Currently, "you can refer it to the police, but unless someone comes forward and files a complaint, we can't do anything. We have no authority to go into the house," said Drew Grivna, president and CEO of The ARC of Beaver and a driving force behind the legislation.

Importantly, in the eyes of many, the bill offers immunity to those reporting possible abuse or neglect and prohibits disciplinary or retaliatory action against them.

"We've had far too many situations brought to our attention of 18- to 59-year-olds being abused or neglected, but there was no law. There was nothing where the Commonwealth of Pennsylvania could intervene," Mr. Sather said.

The legislators have worked closely to gather support both in the advocacy community and among their colleagues in Harrisburg. There was initial concern among some who worried the law might trample people's right to self-determination.

"I think it's really important to balance the need to protect people and also ensure that people maintain their rights. I don't want to see us go so far in 'protecting' people that we don't allow people to make the kind of bad decisions that you or I would make," said lawyer Terry Roth, who specializes in adult protective services issues.

She cited a situation years ago where a woman with mild retardation would go to a local bar and buy a round of drinks when she got her Social Security check. A relative complained that she was being exploited.

Buying everyone a drink "is not a good decision," Ms. Roth allowed, "but shouldn't she be able to make that decision?"

In deference to that sentiment, the Sather/Veon bill requires that adults with disabilities, their families and advocates collaborate with the state in developing protective service regulations.

A 2003 legislative report estimated it would cost $5 million to $7 million a year to provide protective services laws for younger adults, and that counties might handle about 4,000 reports statewide each year.

Even supporters agree that cost will be an issue.

"Given our ongoing financial crunch in the state, there's absolutely no doubt that right now it would be hard. There are no extra dollars," said Sue Walther, director of the Mental Health Association of Pennsylvania.

"It comes down to where you want to put your dollars," said Donald J. Clark, deputy director for Allegheny County's Office of Mental Retardation/Developmental Disabilities in the Department of Human Services.

"If you're going to get in and find a situation, you need to be prepared to pay for the remedy," including relocation, Mr. Clark continued. "It could put people in more harm if you identify a problem but you have no way to fund the remedy."

In 2001-02, the Pennsylvania Department of Aging fielded 716 reports of possible abuse concerning adults under age 60, even though the age group does not fall into their jurisdiction. Also, an estimated 50,000 adults under 60 in 21 states were substantiated victims of abuse, about 30 percent of the total reported, according to the 2003 report. Neighboring Maryland had 619 substantiated cases.

No one knows how often such abuse occurs in Pennsylvania, but nearly everyone working in the field can recite cases.

Nancy Dunn, who used to be with older adult protective services in Beaver County, once learned of a 58-year-old retarded woman living with an aunt who was taking her niece's Social Security checks. "She'd say she was spending it on groceries, but when the caseworker went in, there was no food," Ms. Dunn said.

The woman was afraid to say anything, Ms. Dunn said, because the aunt "would intimidate her, tell her, 'I'm the only person in the world who cares about you.' "

So Ms. Dunn and her staff had to wait nearly two years to intervene. They moved the woman to a safer place on her 60^th birthday.

"If you see two or three situations that you can't deal with, then you know there are many, many hidden ones that you're not even seeing," Ms. Dunn said. "And two or three should be enough."

Some counties have looked for alternative ways to protect younger adults with disabilities. Lehigh County, for example, has one of the highest rates of guardianships in the commonwealth, where officials go to court and effectively take custody of the person.

One case from a few years ago that still haunts Nancy Murray, who at the time was Advocacy and Family Supports Director for ARC Allegheny, involved a 28-year-old retarded South Hills woman who a neighbor saw walking around in freezing weather with no boots, hat or gloves. When the family learned someone was making inquiries about her, the woman disappeared.

"All I can imagine, at that point, was that they were keeping her indoors," Ms. Murray said. "The county says there is nothing they can do unless she asks for services. How is a person like this going to ask for services?"

Six months later, the neighbor called Ms. Murray again to say the woman had come into the grocery with bruises on her arm. She called the police, but the woman told the officer that no one had hurt her, though the officer suspected otherwise.

"Everyone's hands were tied. The patrol officer didn't have the authority to just coax her into the car and take her to the emergency room. I didn't have the authority to say to the police, 'I want you to come into the house with me and I want to take her out,' " Ms. Murray said.

"I will always wish we could have done more for her."