Wednesday, July 2, 2014

A care-givers Dilemma (from a disability perspective).

The following article was printed with permission from the author.

By Tina Calabro - Published in the Pittsburgh Post-Gazette on June 14, 2014
Tina Calabro
In the deaths of Richard Liposchok and his son, Mickey, Tina Calabro sees lessons to learn in how society views the disabled.

On Dec. 17, Richard Liposchok, the sole caregiver of his 52-year-old son, Mickey, took his son's life and then his own with a rifle in their Port Vue home.

The tragedy stunned the close-knit community of 3,800, where the Liposchok family was well known and liked. The elder Liposchok, a 78-year-old retired steelworker known as "Lippy," had been a pillar of the borough's volunteer fire department for decades. His wife, Gail, a one-time crossing guard who had died a year earlier, was admired for her pleasant nature and devotion to the couple's only son.

Like many parents of the early 1960s -- an era that preceded widespread advocacy for disability rights, services and access to community life -- the Liposchoks assumed complete responsibility for the upbringing of their son, who had an intellectual disability. It appears that the family never requested support from the Allegheny County Office of Intellectual Disability, even as services such as day programs, vocational training, community residences and professional coordination of family support became available through the years.

By all accounts, the couple were loving, attentive parents who believed that it was their job alone to provide their son with a safe and comfortable life from childhood through adulthood. Out in the community, Mickey always was in the company of one or both parents.

But this caregiving scenario fell apart when Gail died. In the year that followed, Richard's friends and neighbors noticed a decline in his health and heard him say he was worried about what would happen to Mickey after his own death.

"When Gail died, Lippy was in shock," said Port Vue Mayor Brien Hranics, who knew the family all his life and attended kindergarten with Mickey. "They were of the older generation where the woman raised the kids and set the daily routine." 
"Lippy had a lot of friends who wanted to give him a hand," said Port Vue Police Chief Bryan Myers, who counted himself among them. "But nobody knew how bad it was affecting him." Even when the fire department was summoned to the Liposchok house a week before the shooting because a car was left running in the garage, "no one picked up on that as a sign of what he might be thinking," he said.
Likewise, he added, none of those friends knew about support services that were available for father and son or where to call for information. As a result of the tragedy, the community is now paying better attention to the signs of caregiver distress, he said.
"There was an outpouring of people who called the station to say they could help. A lot of people opened up. They said, 'We have to stop this.' 
"Could it have been prevented? I'm not sure," he added. "You had to know Lippy. He was very private. He didn't want to be a burden, and he didn't want someone else to take care of Mickey."
How could this happen?

That was the question coursing through the human services community after news of the murder-suicide. So much of the Liposchok tragedy did seem preventable.

"It seemed shocking that this could happen in 2013, but these kinds of things happen more than anyone knows," said Nancy Murray, president of the Arc of Greater Pittsburgh. "We were asking ourselves, what can be done to make sure it doesn't happen again?"
The Liposchok case was extreme, but it had elements that were disturbingly familiar: older caregiver of an adult with disabilities, unconnected to resources, facing challenges in isolation, hopelessness and crisis.

Immediately after the incident, Bob Nelkin, president of the United Way of Allegheny County, convened a meeting of top-level human services leaders to examine how the Liposchoks could have fallen through the safety net and how to prevent future tragedies.

That such an "unthinkable act" seemed predicated on having nowhere to turn stunned the human services community, said Mr. Nelkin. The tragedy also revealed another profound reality. "For many caregivers who've spent their entire lives caring for loved ones, there's an ever-present fear: What will happen when I'm no longer alive?"

The ad hoc committee -- which includes Ms. Murray, Don Clark of the Allegheny County Office of Intellectual Disability, Mildred Morrison of the Area Agency on Aging and others -- continues to meet. Discussion has focused on expanding resources and creating a public awareness campaign to ensure that key people within communities -- doctors, pastors, bus drivers, shop owners, etc. -- are aware of the red flags of a deteriorating situation and know who to call for help. The group also is looking at how two parts of the county's Department of Human Services -- the Office of Intellectual Disability and the Area Agency on Aging -- can coordinate their efforts to better serve these families. Had Richard Liposchok been familiar with the intellectual disability system -- and been open to using it -- his son very likely would have been eligible for services, including a "supports coordinator" to determine the need for in-home care, day activities, transportation and alternate living arrangements. Although public funding is limited for the full range of services for adults with intellectual disability (there's a long waiting list, including up to 300 considered "emergency" cases), supports coordinators are trained to marshal resources when caregivers are strained due to advanced age, the death of a spouse or their own health problems. Richard himself was eligible for aging services, which have no waiting list.

It's no secret that parents caring for adults with disabilities sometimes kill the person in their care. It happens with a horrible regularity. A similar murder-suicide occurred outside Philadelphia last summer involving an elderly father and an adult daughter.

The Office of Intellectual Disability does not keep statistics on the number of older parents caring for adults with intellectual disabilities, said Mr. Clark, deputy director of the county Human Services Department. However, there are, and always have been, many, Ms. Murray said.

Older caregivers share several characteristics, she said: 
"They are often the only caregiver, having lost a spouse. They are dealing with their own health issues and facing their own mortality. They are often without any formal support or family support."
Many of these families have given up on getting services or have coped with very little support, she said. They "have lived by the creed that they 'take care of their own,' and it's very hard for them to begin to understand eligibility for services."
"What a parent caregiver has done for a very long time is what they continue to do to the best of their ability," Ms. Murray added. "Many of them wake up each day and try to do the near-impossible." 
"We need to find a creative approach" to finding and reaching out to these families, she said. "The family from Port Vue was just one family, but this has happened before and more than likely it will happen again if people do not reach out to these families."
An arguable 'act of love'

Interviewed by reporters after the murder-suicide, Mr. Hranics expressed what he truly believed: that the killing of Mickey Liposchok was "an act of love." He knew that Richard Liposchok cared deeply for his son.

His very quotable words -- repeated in print headlines, on the airwaves and online -- quickly created a narrative of the crime that some people would readily accept, some people would find appalling, and most everyone would recognize as somewhat familiar.

Leaders in the disability-rights community see a troubling pattern of bias in media coverage of these types of cases. The familiar narrative emphasizes the caregiver's burden and well-meaning (though misguided) intention to save the disabled person from future misery. Unlike victims of other types of domestic violence, the victims in these incidents are largely absent from the story.

Implicit is the unchallenged belief that the victim is better off dead -- a view that flies in the face of hard-fought efforts to ensure self-determination among people with disabilities, including, at the most fundamental level, the right to live out one's own life.

"Historically, we've devalued people with disabilities for a number of reasons -- how they look, how they interact or don't interact, their behavior, the label we've given them because of their perceived limited intelligence or competence," explained Guy Caruso, Western Pennsylvania coordinator for the Institute on Disabilities at Temple University. 
"So when a crime like this occurs, sometimes society doesn't see it as a problem. But it's a major problem, and until we change some of these cultural perspectives, people with disabilities are going to continue to be at risk, not just for so-called mercy killings but for other types of abuse. There's a whole cultural way of thinking about people with disabilities as 'the other' and we've got to change that."
Amy VanDyke, a Pittsburgh ethicist, also sees a reflection of society in the Liposchok incident.
"There's been a shift where people now believe that human dignity, which was once associated with sanctity of life, is much more now associated with perceived quality of life," she said. "We see this in the fact that five states permit assisted suicide. 
"Looking at this particular situation, I wonder how much the father's decision-making capacity was impaired by his own health, fear for his son and grief over the wife who had died," she added. 
"I understand why people would call it an act of love. There's no reason to think that he was anything but a loving father. But I think it really was an act of silent desperation, which not only devalued the dignity of his own son, but also his own dignity. And I think our society bears some of the responsibility for that silent desperation."
Honoring Mickey Liposchok

A few weeks after the funerals for father and son, a vigil for Mickey Liposchok was held in Friendship Park.

On the sunny, cold afternoon of March 1, a handful of people came out for the city's first "Day of Mourning," a national advocacy event to bring awareness to children and adults with disabilities who have died at the hands of family caregivers. The names of more than 100 victims from the past 20 years were read aloud here and in 23 other cities.

Mickey Liposchok was one of nine victims in 2013. "Everyone at the vigil was shocked by how frequent the murders are," said Lauren Stuparitz, a librarian from Lawrenceville who organized the vigil.

People who knew Mickey only from a distance may have made assumptions about his needs, observed Cathy Krajack, a family friend who cleaned the Liposchok home and had grown close to Mickey. Contrary to comments in the news, he was not bedridden, he did not wear diapers, nor did he need to be fed, she said.

Ms. Krajack knew Mickey as a shy, gentle person who loved Donny Osmond and Elvis, who looked forward to a trip to the store each week to buy the latest National Enquirer and Star, who had an extensive and beloved collection of VHS movies and oldies. "He was mentally challenged but very smart, too," she said. "I miss him."

Tina Calabro ( regularly covers disability issues for the Post-Gazette and is active in the disability-rights community. She lives in Highland Park.

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