Monday, November 1, 2010

New Pennsylvania protective services law will make disabled people less vulnerable to abuse

From Pittsburgh Post-Gazette:

By the time Debbie Borodin's family members found her locked in a basement, where she'd been abandoned for more than three weeks with her sister's dead body, it was clear the two women had fallen through a big hole in Pennsylvania's human services safety net.

In the months prior, it had been just as clear that Debbie wasn't properly nourished, but officials could do nothing for the developmentally delayed Philadelphia woman after she was ejected from a social services day program for stealing food from fellow participants. Family members contacted the county's human services department seeking help, and representatives of two service agencies tried reaching out to Debbie and her sister Susan -- who, like Debbie, had Down syndrome and also a heart condition.

But no agency had the authority to investigate any suspicions of abuse in their household.

It wasn't until the sisters' caretakers, a third sister and her husband, lost their home -- due to drug abuse and financial insolvency -- that other family discovered Debbie locked in a basement with Susan's body.

Had Ms. Borodin been a child or a senior citizen, protective service agents could have intervened sooner. Instead, because she was in her 30s, no government agency had the authority to force the issue.

Until recently, Pennsylvania was one of four states that did not have adult protective services law on the books to investigate reports of abuse, neglect, exploitation or abandonment of disabled adults whose ages fall in the great divide between juvenile and elderly. But under the Adult Protective Services Act passed last month and signed by Gov. Ed Rendell on Oct. 7, situations like Ms. Borodin's could become relics of a grim past. Investigators who suspect abuse or neglect by caregivers will be able to knock on doors of disabled adults between the ages of 18 and 59 and take action.

"It's been horrible" trying to manage abuse cases in the absence of a law, said Nancy Murray, who advocates for adults and children with disabilities as president of the ARC of Greater Pittsburgh. "Whenever somebody would call and say, 'I think somebody's being abused or neglected,' my first question would be, 'How old is this person?' If they said somewhere between 18 and 59 my heart would sink because I knew that there was very little that I could have done to help protect that person."

Individuals protected by the new law are still guaranteed the right to make what some might consider bad decisions regarding their lifestyles, relationships, bodies and health, as long as they are legal. For example, a man might choose to spend his entire Social Security check each month on drinks for his friends, even if relatives would prefer an intervention.

But if a caregiver blows a disabled person's check on alcohol, under the new law, it's a violation.

"Many of the people who are abusing [disabled adults] are their caregivers," said Sen. Patricia Vance, R-Cumberland, the primary sponsor of the bill. "It's often the case -- if their neighbors had reported them and police arrived -- that they could not remove the person who was being abused from the scene. There was no system in place. There was no place to take them. The law did not allow it."

No lawmaker voiced philosophical opposition to the act, though many argued that the state couldn't afford to add new services of any sort.

Adult Protective Services ultimately passed without any appropriations attached. The state Department of Public Welfare will spend the next several months hammering out regulations and looking for funding.

During a seven-year legislative effort to get the law passed, some stories from the community of 18- to 59-year-olds gnawed at disability care providers; their stories endure as guideposts for how to carry out the law:

There was Debbie Borodin, who testified before lawmakers in 2006 about living with her deceased sister in a trash-strewn apartment while a third sister and her husband cashed Debbie and Susan's Social Security checks.

A Pittsburgh disability advocate recalled the case of a 26-year-old mother with multiple sclerosis who was frequently a no-show for doctor's appointments. When she did come, the doctor noted she was dirty and disheveled and admitted she did not take her medications regularly. The advocate, Sherie Lammers (pictured) of the Western Pennsylvania chapter of the National Multiple Sclerosis Society, eventually learned that the woman wasn't refusing to take her meds; rather, the woman's M.S. had progressed rapidly because her meds were being denied to her. (Mrs. Lammers declined to name the woman to protect the family's confidentiality.)

The M.S. patient's mother -- who lived outside Allegheny County -- had reported her concerns about her daughter's safety to police in the small southwestern Pennsylvania town where her daughter lived, but when they arrived at the house to check on the situation, the daughter's husband told officers his wife wasn't home. Grasping for another solution, the woman's mother called child protective services to report that she suspected her daughter's three young children were in danger, and that's when officials had legal grounds to get involved.

Child protective services arrived to find the 5-year-old and toddler twins locked in a room. Child advocates found the M.S. patient thoroughly incapacitated and contacted a women's shelter. Her husband had prevented her from taking her disease modifying medications and was sedating her to the point of unconsciousness, according to the counselor from the shelter. She had gone blind and was unable to walk from not taking medication to prevent the progression of the disease.

The woman slipped into a coma and died. The husband spent four months in jail for endangering their children.

Mrs. Lammers said she also works with a woman in her early 40s in the North Hills whose husband left her at home for up to 11 hours in soiled diapers. She said the husband was left in sole charge of his wife's care after her son went off to college. The husband was embarrassed by his wife's illness and didn't fill her prescriptions on time because he felt her medicines were bankrupting the family.

Her doctor became concerned because she didn't show up for appointments. When she did, she had bedsores. In cases like this, rank-and-file officers or a police detective could have done a welfare check, but couldn't enter the home without probable cause.

Ms. Murray, of ARC, said in the absence of a law, negligent caretakers have been hard to pin down, even in the face of a vocal citizenry: The story that came to mind was that of a young woman who lives in a dilapidated house in the Allentown section of Pittsburgh with various family members.

Neighbors knew she had attended special schools as a child. Over several years, these neighbors reported to Ms. Murray and other officials that they'd seen the woman with an intellectual disability, now in her late 20s or early 30s, walking the streets in unsuitable clothing for winter. She seemed perpetually hungry. Some reported seeing bruises. Neighbors then said they saw her out less and less. They tried to talk to her but she appeared frightened.

"Oftentimes, folks like this young woman are threatened by their family members not to talk to strangers. Either her communication skills are not very good or her family has threatened her, or both," Ms. Murray said.

"The family is basically living off her government benefits."

Social Security does not assign a caseworker; it simply cuts a check, so the agency would not know whether a person is not receiving the money or is hungry. But advocates, concerned family members and neighbors will soon be able to take advantage of the new enforcement powers guaranteed by the Adult Protective Services law.

"If this law were in effect today for this young woman in Allentown," Ms. Murray said, "I or somebody else would call the appropriate authorities and an investigation would be mandatory."