(This article appears in the Summer 2015 issue of SSA Magazine.)

That everyday experience transformed the way Pollack thinks about disability and prompted him to write journalistic pieces that have touched the lives of thousands of other people caring for people with disabilities. They have also gained a following among policy makers and helped to influence legislation, such as the Affordable Care Act.

Vincent Perrone

“Vincent’s arrival changed my perspective from third person to first person. I was able to see the social service delivery system from both sides of the counter,” says Harold Pollack, the Helen Ross Professor at SSA and a leading scholar on public health policy.

Pollack has produced an extensive set of academic papers on public health and poverty, as well as disability issues. The emergence of new media outlets, such as blogs, online extensions of traditional publications, and specialized websites powered with the potential to share links via social media, gives him a chance to communicate directly to an audience interested in the needs of individuals who live with intellectual disabilities and the needs of family caregivers. It also enriched his scholarship and provided him material for an upcoming book on the history of treatment of people with intellectual and developmental disabilities (IDD) in the United States.

In pieces for The Washington Post, The New York Times, healthinsurance.org, Huffington Post, The New Republic, and others, Pollack has written about family caregiving, and has challenged people to think about ways society can respond better to the needs of people with IDD. His work is part of a national conversation about disability and continues in his Twitter feed, which now has more than 7,000 followers.

“Harold has been a unique and invaluable driver of what I’d call ideas journalism,” says Atul Gawande, a surgeon and public health professor at Harvard who is also a staff writer for The New Yorker.

“He is demonstrating that academics can have an important place in using blogs and print outlets to provide analysis in a timely way for critical debates. And he is going further by covering the development of ideas themselves as a journalist—whether through interviews with other thinkers or reporting on how their ideas are or aren’t entering the policy sphere. Harold has been an incredibly effective catalyst for ideas in health care and social policy.”

Pollack writes about his brother-in-law’s experiences—and the very different experiences of others—in an effort to put a human face on complex policy challenges. That example helps explain how complex bureaucracies affect the lives of persons with disabilities. “The prism of one individual helps to illuminate for lay readers insights about policy that otherwise would be less engaging or understandable,” says Greg Anrig, vice president of policy and programs at The Century Foundation, a public policy research organization where Pollack has been a non-resident fellow since 2010.

Pollack’s work is part of a long tradition of senior UChicago scholars contributing to popular publications, either through opinion pieces or regular columns. The emergence of new media outlets has changed the pace, however, and given scholars more control over the length and content of what they write. Editors are no longer exclusive guardians of of entry to publication. “This creates its own challenges and responsibilities. The only thing standing between you and your audience is the send key,” Pollack says.

Perrone, who is now 49, came to live with Pollack, his wife, and their two young daughters after Pollack’s mother-in-law died in 2004. Although encouraged to put him in an institution, Janice Perrone and her husband Gregory (who died in 1999) instead decided to keep him at home.

Pollack and his wife, Veronica, “silently feared the eventual responsibility for Vincent’s care. How would he deal with our two young daughters, and they with him? We feared the financial and logistical ramifications of bringing him into our home. Janice refused to discuss his future with us,” Veronica and Harold wrote in a widely read Health Affairs article, “Bringing Vincent Home.”

“We quickly found that many of our fears proved worse in prospect than in the reality of Vincent’s care. We’d underestimated Vincent in many ways. He has an I.Q. in the mid-fifties and struggles to communicate verbally. Yet he understands everything we say. He has an uncanny memory for things meaningful to him: television characters, our friends, and the household schedule,” the Pollacks wrote of Perrone, who has fragile X syndrome.

Despite the ease with which Perrone was able to become part of the family, he faced many health-related issues, which have required multiple hospitalizations and a variety of other forms of medical care. As they worked to help Vincent adjust and stay healthy, the couple learned about social services available, how to maneuver through the Medicaid bureaucracy, and how to advocate for him. The experience was often baffling, even to the two well-educated professionals.

The bulk of that work fell on Veronica Pollack, who was trained as a pediatric clinical nurse specialist. “I’m not sure I could ever communicate just how much Veronica has done to help Vincent, over so many years now,” Pollack says. “I can tell my readers about some particular overnight hospital stay or some other challenge. Unless someone has experienced something similar, it’s almost impossible to convey the sheer relentlessness of the task. I try to convey some of that to our students, who meet other families who face analogous challenges—families that lack the resources Veronica and I can bring to bear in caring for Vincent.”

Caring for an individual living with fragile X syndrome poses many challenges. Fragile X is a genetic condition associated with a range of developmental problems, including cognitive disability and various other symptoms, including some associated with autism. Vincent has a sweet disposition, but like many men with fragile X syndrome, he requires help with nutritional self-regulation.

“Food provided his main gratification. Whenever he was hungry, he would go to the refrigerator, fix a bulging peanut butter sandwich, and drink it with a brimming glass of Pepsi. Five feet eight and one-half inches tall, Vincent weighed perhaps 340 pounds at the time of Janice’s death,” the Pollacks wrote. They don’t really know, since that was the top weight recorded on their bathroom scale.

“Laundry and housekeeping were constant challenges. He didn’t sleep well. At night he would blare his TV, scavenge in the kitchen, and tear up books and old photos. Having limited tools to negotiate conflict, Vincent would bite his palms when he was angry or frustrated. He sometimes hit or pinched Janice, leaving small bruises.” Due in large part to the limited ability to communicate, surveys indicate that one-third of family caregivers of men with fragile X syndrome have been injured by the person they care for.

Vincent has had multiple hospitalizations and has other important medical needs. At one point, he needed four weeks of round-the-clock home IV care. “We spent ten hours in the emergency department after he pried off a child lock and ate a box of chocolate-flavored vitamin chews,” the Pollacks wrote.

Vincent accepted, with some grumbling, drastic life changes. His room has no TV. He ate a portion-controlled diet. “By fall 2004 a handsome, slimmer man emerged” At his slimmest, Vincent weighed 175 pounds. He has regained some of the weight. He remains far healthier and slimmer than he was when he walked into the Pollack home.

Perrone stayed in the family’s home for almost three years, before he moved to a nearby group home.

Contributed By:

By William Harms

SSA Professor Harold Pollack uses blogs, op-ed postings, and video to discuss the problems of the handicapped through the perspective of his brother-in-law, a person with an intellectual disability. By sharing his family’s experiences, Pollack is able to prompt a nation-wide discussion and touch the lives of other families who are caring for people with disabilities. The media work is an extension of his academic publications on public health and poverty, as well as disability issues. His work has gained a following among policy makers and helped to influence legislation, such as the Affordable Care Act.

 

Harold Pollack

Harold Pollack and his wife, Veronica, learned about the many challenges faced in caring for a person with intellectual disabilities when her brother Vincent Perrone came to live with them.

Veronica Pollack

Veronica Pollack has shouldered much of the work of caring for her brother, Vincent Perrone, and also joined Harold Pollack in writing about their experiences.

Pollack was a special correspondent for The New Republic in 2009 and 2010 and continues to write for the publication, though most of his current journalism now regularly appears in The Washington Post’s Wonkblog section. During his time as a special correspondent for The New Republic, he wrote for the magazine’s influential blog “The Treatment,” which was originated and run by Jonathan Cohn, senior editor and a leading reporter on health care reform. “Having Jonathan as my editor there was a highlight of my career,” Pollack says. He also credits Vox’s Ezra Klein, The New America Foundation’s Mark Schmitt, and Steve Anderson of healthinsurance.org, and others as providing the feedback he needed to bridge the worlds of academia and journalism.

“The editors I have worked with in my journalism taught me that there is real craftsmanship in the task—crafting an argument, structuring a story, disciplining the writing to meet deadlines, and word limits. There is also a craft to effectively and ethically interviewing people. I believe that aspect of my popular journalism has helped me in my research.

“I’ve learned to prepare well for an interview and gain people’s trust.” Many of his video interviews end up posted with his pieces as Pollack has used Skype as a tool in his reporting.

Amy Berman, senior program officer at The John A. Hartford Foundation, praises Harold Pollack for his interviewing skills. She joined him for two interviews that appeared in The Washington Post about her own experiences living with stage-IV breast cancer, as well as for an article in Politico Magazine last year.

“I talked about how palliative care has been unfairly treated in the policy sphere. I found Harold to be incredibly engaging and warm. He really gets to the heart of human issues,” says Berman, who writes about treatment topics.

“He is incredibly balanced in his journalism. He includes both ends of the political spectrum and accordingly creates an opportunity for a rich public dialogue. Having this in Politico is a tremendous opportunity to reach people.”

“What I admire about Harold is that he is eager to reach out to everyone he thinks can make a difference and he invests the time to use any tool he can find to get it out there,” said Joe Entwisle, senior health policy analyst for Health & Disability Advocates, headquartered in Chicago. Entwisle was paralyzed in a wrestling accident as a high school student. Entwisle himself frequently writes about disability from a variety of perspectives. The two men conducted a dialogue on disability issues that ran on The Washington Post’s site.

Pollack’s journalism often includes commentary on health care developments and the implementation of the Affordable Care Act. His postings on living with disability or chronic conditions are close to home for him and also promote lively responses.

“I’ve heard from policy makers across the aisle who tell me that they have someone in their families with a disability. They’ve sometimes asked me for my opinion about how policies should be changed,” Pollack says.

David Cutler, a professor of applied economics at Harvard and a senior advisor to President Obama on health care policy said that Pollack’s work helped shape the Affordable Care Act.

“What Harold pointed out that was useful was the observation that people like Vincent and others who have disabilities or conditions such as HIV/AIDS need help from someone else to access the health care system. The beauty of what Harold has done through his writings is to point out that health care reform was not just an economic issue, but a social one as well. No one person is responsible for policy changes, but these points were incorporated into the law because of Harold’s work.

“He also made a point of stressing the importance of paying attention to predicable high cost medical expenses and suggesting ways to save money in those areas. He helped us understand that Vincent’s case is unique as are the cases of other people with disabilities, but that the process needs to work in a similar way and that social workers can help coordinate care to help keep costs down. Those observations were included in the legislation,” Cutler says.

Pollack maintains that his success in journalism is based on the credibility as a careful, serious scholar. Pollack, who has a BA in electrical engineering and computer science from Princeton, developed his interest in social issues as a volunteer at a homeless shelter while working at an engineering job just out of college. At the shelter he learned about the struggles of vulnerable people and the shortcomings of the systems that were supposed to help them, he says.

The engineering laboratory where he worked was in Cambridge, Massachusetts, near Harvard’s Kennedy School of Government, where Pollack began taking classes and earned a PhD in 1994. After Harvard, Pollack joined the first cohort of the Robert Wood Johnson Foundation Scholars in Health Policy Research program. Following a research appointment at Yale, he became a faculty member at the University of Michigan Department of Health Management and Policy, receiving tenure there in 2002. In 2003, he joined the SSA faculty.

In 2011 he received a grant from the Robert Wood Johnson Foundation that supports his empirical research and his book project. The project “Intellectual Disability and the American Medical Welfare State” studies the accomplishments and shortcomings of governmental and private agencies in dealing with three common genetic conditions associated with intellectual disability: Phenylketonuria (PKU), Down syndrome, and fragile X syndrome.

He is the author and co-author of numerous academic articles on disability policy, including “Learning to walk slow: America’s partial policy success in the arena of intellectual disability,” Journal of Policy History (2007), “The impact of managed care enrollment on emergency department use among children with special health care needs,” Medical Care (2007); and “Health policy and the community safety net for individuals with intellectual disability,” Developmental Disability Research Reviews (2011).

In general, our nation’s response to the needs of people with IDD is a quiet triumph of American social policy over the past two generations, Pollack said. Few people respond in a negative way to Perrone when they are out in public. Be it hard driven executives slowed by him as he maneuvers through airport security, or tough-looking teenagers who give him a friendly wave, on a personal level, the gentle, friendly faced Perrone is accepted almost everywhere he goes.

The changes in public attitude, which Pollack is writing about in his new book, were strongly influenced by people who shared their own stories of caring for loved ones living with IDD disabilities. After World War II , Nobel prize winning author Pearl Buck and television star Dale Evans wrote about their personal experiences with children with intellectual disabilities. They helped normalize the experience and hundreds of thousands of parents, largely middle class mothers, responded by advocating for the children.Vincent, Veronica, and Harold at home

“America has really opened its heart and its wallet to people living with intellectual disabilities. This is an overlooked triumph in many ways,” says Pollack. The support crosses class, racial and social lives as the problem of intellectual disability touches families regardless of their station in life.

One result of the support has been The Americans with Disabilities Act, passed in 1990, which prohibits discrimination on the basis of disability and other laws that have secured a place in society for people with disabilities. In 1999, the U.S. Supreme Court in its Olmstead decision ruled that the disabled are entitled to live in the least restrictive conditions possible, on a human scale, often within their own communities. “Olmstead may be the most important Supreme Court decision few Americans have ever heard of,” Pollack says.

Many people with IDD disabilities have lives that are much better than they would have been 30 or 40 years ago. Pollack interviewed one young woman, for instance, who has become a champion athlete, has a nice relationship with her boyfriend, and commutes to work at a local high school where she works in food service. “All this is possible because of the social services and legal protection we have established.”

“One thing I am able to point out through my journalism and my research is the tremendous variety of circumstances experienced by people with intellectual disabilities and their families,” he says.

“Disability policy is less driven by the usual partisan and culture-war divides that disfigures so much in American politics.” Many social and fiscal conservatives are interested in establishing incentives for people to save money to help family members with disabilities, to find ways that people living with disabilities can be more economically secure and self-supporting.

The work needing to be done on behalf of people living with disabilities and their families is evolving, he says. Illinois remains behind in providing key supports, particularly in providing appropriate home- and community-based supports for people who need them. More needs to be done as young adults with IDD “age out” of the support they receive as adolescents from local schools and transition to adult home- and community-based services. Illinois ranks in the bottom ten for key measures of accessibility and quality of such services across the states.

Improved health care has extended the lives of individuals with Down syndrome and related conditions. More than 800,000 individuals with IDD now live with caregivers who are over the age of 60. Most of these caregivers are parents, who have often cared for their adult children for decades in the family residence. Illinois and the nation must find more effective strategies to assist these families, he said.

Pollack is interviewing caregivers to see what their plans are as part of his research. Joining him is Rebecca Feinstein, PhD ’13, assistant professor at the Paul Baerwald School of Social Work and Social Welfare, Hebrew University of Jerusalem.

Among the forty caregivers she has interviewed, she has found that “about a third of the families have no concrete plans at all as they can’t imagine someone else taking care of the children. Some have arranged for siblings to give care, such as was the case with Harold and his wife, and others have legal plans for guardianships and alternative housing arrangements,” she said.

Feinstein worked with Pollack as a graduate student and continues to work with him on his intellectual disabilities project. She also plans to continue her research by studying how families caring for children with disabilities manage health care services in Israel.

Pollack’s perspective as a caregiver as well as a researcher is a valuable asset, she said. “He is able to keep the work relevant because he understands the context that people live in. He has the big picture in mind, but also understands the everyday experience of people’s lives as he’s walked their walk,” she said.