THE FRAYING SAFETY NET: CARING FOR THE MENTALLY RETARDED FIRST OF TWO PARTS Pennsylvania spends millions each year caring for its most vulnerable citizens. Today and tomorrow, the Post-Gazette looks at another category of those people, the mentally retarded. Some live in personal care homes that aren't equipped to care for them. Others rely on caregivers who have to navigate a funding stream that changes at county lines. State and federal regulators are trying to tighten and enforce rules, but there are cracks. Steve Mellon, Post-Gazette

Brian White, left, depends on older brother David for almost all his daily needs, but the Bedford County family nearly had their benefits cut by 75 percent this year before state officials intervened. MORE COVERAGE Community care muddle: Rules for helping mentally retarded vary widely among counties Route to a safer environment winds through web of red tape Previously in this series Waging war on addiction Social safety net is unraveling

Nearly 3,000 people with mental retardation are on Pennsylvania's "emergency" waiting list for residential services, meaning the state acknowledges they need a place to stay immediately. Because space might not be available in a group home for years, more and more are turning to personal care homes, with numbers nearly doubling in three years.

That, in itself, is a concern, as personal care homes are not monitored as closely as nursing homes, and they are not always staffed or equipped to care for retarded people.

But that concern has ratcheted up in recent months after allegations of abuse and other criminal activity in Eastern Pennsylvania personal care homes and an unsettling, previously undisclosed situation closer to home.

Acting on a complaint, two members of Pennsylvania Protection and Advocacy, a federally funded, nonprofit agency which advocates for people with disabilities, visited the Green Acres Personal Care Home in Rossiter, Indiana County, this summer.

They found that Green Acres housed at least nine adults who are retarded and up to six other adults, not retarded, who are convicted sex offenders.

In one instance, Protection and Advocacy staff say, a mildly retarded woman was sharing a room with a sex offender, and the two were living as a couple.

Based on what they found, Protection and Advocacy officials alerted the state's Office of Mental Retardation, requesting an investigation.

"First and foremost, we are concerned with the safety of the residents," wrote Pennsylvania Protection and Advocacy Deputy Director Judy A.W. Banks in a July 7 letter to Department of Public Welfare officials, adding that "several residents have expressed a desire to leave."

The state did investigate, and its Aug. 12 inspection report cited Green Acres for not having enough working toilets, not having enough activities for residents, not serving balanced meals and not fixing a ripped window screen in Bedroom 16, among other minor offenses.

The report made no mention of sex offenders and retarded people living in the same facility.

The reason?

Pennsylvania has no laws or regulations prohibiting sex offenders from living with mentally retarded people in state-licensed facilities, nor does it require that personal care homes document that sex offenders live there.

That would be an invasion of the sex offenders' privacy, spokeswoman Stacey Ward said.

"If we do know of the placement of a resident where we know there is a registered sex offender, we will work with the facility to make sure they are not going to be a threat to the other residents," she said. After inspecting Green Acres, she said, they decided the residents were safe.

Ms. Banks said her organization found no proof that residents had been assaulted, although one woman told them another resident had groped her under her dress.

In a brief phone interview, Green Acres administrator Paul Zinzella told the Pittsburgh Post-Gazette, "I haven't had any problems with the ones I take care of."

	Steve Mellon, Post-Gazette
	David White helps brother Brian walk down a series of steps at their home in Reynoldsdale, Bedford County, last month. Mr. White quit his job as a carpenter to take care of Brian, 46, who was born with cerebral palsy and suffered severe brain damage at birth.

Mr. Zinzella said most of the residents had lived there for years, most of them referred by agencies rather than family members. In addition to the sex offenders, at least one resident has a robbery conviction.

He described concerns about mentally retarded people living among sex offenders as "kind of blown out of proportion."

Two residents were convicted of having sex with underage girls, but, Zinzella said, "We don't have any violent sexual predators. I don't have any of the type that you see on TV." That hardly salves Pennsylvania Protection and Advocacy's concerns.

"We felt there were folks with mental retardation living there who are at risk because we weren't sure they really understood the ramifications of living with registered sex offenders," said Jacqueline Beilharz, the agency's developmental disabilities team leader. "We also weren't sure they could communicate their feelings about that even if they were aware."

Green Acres, she said, is on an isolated road, leaving residents dependent on the staff if they want to leave, and the only phone was locked in the staff office.

"The problem is that people tend not to report," Ms. Banks said, "and, if there are problems, owners tend to keep them internal because they don't want people to know what's going on."

If that's true, there are thousands of reasons to worry.

In addition to the 2,921 Pennsylvanians with mental retardation in emergency need of a place to live, the state knows of another 19,977 who say they'll need a place to live in coming years.

In 2000, then-Gov. Tom Ridge announced an $853 million initiative to reduce the waiting list, but the effort stalled after Mr. Ridge left to become director of homeland security.

"Gov. Ridge had the advantage of a very good economy and the economy now has been really struggling," said DPW Deputy Secretary Kevin Casey, who heads the Office of Mental Retardation. With the downturn of the economy, tax revenues for addressing the list have been drying up.

Mr. Casey believes that, under the circumstances, Gov. Ed Rendell "has been pretty generous" in allocating money to reduce the waiting list, but said he could not predict when everyone on the waiting list will get services.

"It will get resolved, but I don't see that happening in the next couple years."

Another part of the equation is the financial pressure on personal care homes. The Pennsylvania Protection and Advocacy report on Green Acres said the home had struggled to fill its beds, and that probably contributed to its mix of residents. "This home appears to be a dumping ground" for those coming out of the court system, PPA staff wrote in their site visit report, noting that Mr. Zinzella had told them "he has taken these consumers to 'stay afloat.' "

The report also said, "according to the owner, staff has no training in how to work with sex offenders."

The vast majority of Pennsylvania's personal care homes are well-run, caring facilities staffed by dedicated workers, and they might be the best possible setting for some people, even those with a range of disabilities.

"The reality is, there are a lot of good personal care homes out there, but there are lots of bad personal care homes out there, too," said lawyer Alissa Halperin, of the Pennsylvania Health Law Project, who specializes in personal care home issues.

Mr. Casey himself allowed that "I don't think that personal care homes are good options" for people with retardation.

There's been troubling evidence of that in the past two months:

In October, state officials closed a personal care home in Annville, Lebanon County, after the death of resident Nancy Orlosky, 46. Results of her autopsy are still pending. In addition to more than 40 fire and building code violations, Annville Township Police Chief Michael Burdge said he is investigating allegations by former residents and staff that residents, many of them mentally impaired, were subjected to physical and sexual abuse. "This has been a real eye opener for me," Chief Burdge said. "The laws are just not there to protect these people in a personal care home, versus a nursing home."

Also in Lebanon County, Tina Fake, the owner of Reaching Out Personal Care Home, and her husband, Clifford, were indicted in October by a federal grand jury for health care fraud that resulted in serious bodily injuries. Authorities learned of problems after a resident was taken to the hospital with broken ribs, a broken arm and bruises over 60 percent of his body. A police investigation reported that another resident was punched in the face when he refused to put inserts and weekly papers into plastic bags, a job for which the home owners pocketed the $1,500 payment. According to the affidavit, "This activity took place in an unheated garage ... and residents were forced to participate, even if sick." At another property held by the same owners, according to police, they found a 64-year-old disabled woman who'd been living in a basement "for several years."

Police found "a large amount" of marijuana and some cocaine in a Newville, Cumberland County, personal care home in October. The home's owner, Gary Orris, 51, was charged with manufacturing and possessing marijuana and cocaine possession.

In recent years, the local area has had its share of problems, too: Halls Personal Care Home, North Side, housing 13 mentally ill and mentally retarded people, closed in February because of filth and a lack of food for residents.

In August 2004, a mentally impaired woman, June Loth, 79, died a week after allegedly being sexually assaulted by a handyman at the Scenery Heights Personal Care Home in Elizabeth Township.

Two years before that, resident James J. Potts, 19, who is retarded, was charged with raping a 49-year-old female resident, also retarded, at the Laurel Highlands Personal Care Home in Donegal.

And, in 2000, Jack Cavolo, 59, who had Down syndrome, died at the 105 Homer Place personal care home in Lawrenceville after a worker, exasperated after working a double shift, tussled with Mr. Cavolo and fell on him, causing the fatal injuries.

The most recent events have surfaced just as tighter regulations for personal care homes take effect. The new regulations require individual assessments of residents and individual service plans, among other improvements.

But with 53,000 people, at least 1,000 of them legally retarded, living in 1,700 personal care homes statewide, how closely can the state monitor their care? How often are retarded or other disabled people being abused or exploited and no one finds out?

"We don't know, and that's one of the problems," said Sue Walther, director of the Mental Health Association of Pennsylvania. "Our sense is, it is certainly happening frequently enough that we should have some outside arm coming in to investigate reports of abuse and neglect."