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Health Advocacy Bulletin

Health Advocacy Bulletin is the official Journal of the Health Advocacy Program at Sarah Lawrence College. Archived issues from the most recent issue back to the Fall 1997 issue are available for download in PDF format below. You will need the free Adobe Reader to view these PDF files (Download Adobe Reader»)

Health Advocacy Bulletin is also available in hard copy format. To request back issues, or to subscribe to receive future issues, please e-mail Crystal Greene.

Health Advocacy Bulletin Fall 2009

In This Issue:

  • Letter from the Director
  • Letter from the Editor
  • Student Fieldwork
    • From Patient to Patient Advocate at Dartmouth-Hitchcock Medical Center
    • On the Frontline in the "War of Words" Over Health Care Reform
    • African Services Committee and Their Clients: Health-Motivated, Self-Motivated
    • Opportunities for Advocacy with Adolescents
    • Developing Resources for Patients with Breast Cancer
    • On My Way...A LEND Fellow Experience
  • HAP Professional Development Series: Social Return on Investment
  • Faculty News
    • Using Patient Voice to Construct an Emergency Medicine Clerkship
  • Faculty Profiles: Christobal J. Jacques and Jennifer Buckley

Letter from the Director

By Laura Weil, Health Advocacy Program

The current health care reform debate has created interesting collisions of opinion. Here’s one that’s perhaps unexpected: there is resistance to finding out which medical treatments actually work best.

There are those who are opposed to engaging in what’s being called comparative effectiveness research—determining the relative efficacy of treatments and drugs already on the market. Wouldn’t we want to know what treatments work best? And wouldn’t we want to take advantage of that knowledge to provide people with the best and least dangerous treatments for diseases? Apparently, some people don’t think so. Opponents have raised the flags of one-size-fits-all medicine, of limitations on physicians’ autonomy to prescribe and of denying patients choices and treatment options. We are so caught up in the American ideal of self-determination that we are threatened by the idea of “standardized care” or that we might be forced to use the best, safest, most effective treatment for a disease. What’s at issue here is that the best treatment might sometimes be the cheapest, or the oldest or not the new drug that “Bob’s cousin got.” We’d rather be swayed by glitzy advertising and bragging rights to “the newest” therapies than by having evidence that determines what actually works best.

The temperature really gets elevated when there’s talk about mandated rather than recommended clinical guidelines based on comparative effectiveness research, and about value-based purchasing that might limit access to exorbitantly expensive treatment that has no greater benefit than less pricey alternatives.

But clearly we need to do something to get the U.S. health care system out of the pit of being 37th on the World Health Organization’s ranking of overall health care, despite being by far the most expensive system in the world. | Read the full article

Health Advocacy Bulletin Spring 2009

In This Issue:

  • Letter from the Director
  • Letter from the Editor
  • Faculty Profile: Mary Ann Baily
  • Letter from the Dean of Graduate Studies
  • Notes from the Field
  • Bridging the Information Gap
  • Advocating for Changes in Long-Term Care
  • Providing Preventive Care for the Uninsured
  • Advocacy from a Genetics Perspective
  • Student Internship: Ethics in Health Care at the VA
  • Student Paper: The Death of Self
  • Holiday Party
  • Upcoming Meetings and Conferences

Letter from the Director

By Laura Weil, Health Advocacy Program

It’s with great pleasure and humility that I’ve agreed to continue my work on behalf of the Health Advocacy Program. It’s an exciting and challenging time to be here. I’m indebted to the College, the faculty, alumnae/i, students and organizational partners in the field for their generous support of the Program – and for giving me an ongoing opportunity to contribute to the growth of our profession.

January’s U.S. News and World Report cites Patient Advocate as a “cuttingedge career” for 2009. I’ve spent the past 20 years as a patient advocate—and just as long trying to explain what “health advocacy” means to polite but mystified people—so I find their prediction to be an astounding development. It’s a clear indication that our health care system’s catastrophic shortcomings have finally reached the tipping point in public awareness. | Read the full article

Health Advocacy Bulletin Fall 2008

In This Issue:

  • Letter from the Interim Director
  • Letter from the Editor
  • Capstones in the Health Advocacy Program Curriculum
  • Notes from the Field
  • Working with Refugees and Returnees in Sudan
  • Mental Health Advocacy
  • Direct Patient Advocacy
  • Communicating for a Cause
  • Postgraduate Policy Internship
  • Student Paper: Changing How We Eat
  • Faculty Profiles: Betty Gilmore and Rebecca Johnson

Letter from the Interim Director

By Laura Weil, Health Advocacy Program

The Health Advocacy Program has enjoyed many successes overthe last academic year, and we look forward to continued vitality and growth. We graduated nine students in 2007-2008, and anticipate sending seven more professionals into the field in May. With the support of Graduate Admissions, recruitment has taken significant steps to increase inquiries and applications, attracting a greater percentage of well-qualified younger students to the program. This has given the entering class of 2008-2009 a healthy mix of traditional full-time students to complement our customary population of part-time career-changers. In addition, the entire faculty has enthusiastically come together for several meetings and a day-long retreat to work on curricular enhancements.We are honing the connections among the courses to support a cohesive curriculum that will better prepare graduates for success in the broad profession that is health advocacy. | Read the full article


Health Advocacy Bulletin Winter 2008

In This Issue:

  • Letter from the Interim Director
  • Formation of the Health Advocacy Advisory Board
  • Letter from the Editor
  • Building a “Do it Yourself” Retirement Community
  • Becoming an Entrepreneur in Geriatric Care Management
  • Empowering Hispanic/Latina Women
  • Creating New Positions: Health Advocacy in Local Government
  • Training Seniors to Be “Trouble Makers”
  • Finding My Niche: Patient Advocacy in Palliative Care
  • Managing Clinical Research Programs
  • Helping Seniors Navigate the Health Care Maze

Letter from the Interim Director

By Laura Weil, Health Advocacy Program

We are presently in the midst of an extraordinary time for health advocacy. Our field seems to have come to the surface of everyone’s awareness—a Google search for health advocacy now produces over 29 million hits. Universal health care is suddenly one of the top issues in a presidential election. Those of us who identify ourselves as health advocates are not as often asked “um… what is a health advocate exactly?” Rather, we often hear that “We really need health advocates. I wish I’d been able to find one when…” This change speaks to a substantive recognition of our role as it relates to improving the experiences of people encountering the health care system’s deficits, a prevalent acceptance of the fact that U.S. health care is not necessarily the best, and that our wild expenditures are not producing superlative care. There is a growing sense that we might actually be able to change something this time around. | Read the full article

Health Advocacy Bulletin Spring 2007

In This Issue:

  • Illness Narratives and Health Advocacy
  • Sarah Lawrence Welcomes David Watts
  • Powers That Be
  • Sick Robots
  • The Patient Advocate as Patient
  • Giving Voice to the Developmentally Disabled
  • From Economics Paper to Op-Ed and Speechmaking
  • Beneath the Skin
  • WORD: The Illness Narrative
  • To Pee or Not to Pee
  • Women’s Illness Narratives

Illness Narratives and Health Advocacy (excerpt)

by Sayantani DasGupta Faculty, Health Advocacy Program

What is it to experience suffering? Almost six years ago, the course “Illness Narratives: Understanding the Experience of Illness,” was introduced to the graduate program in Health Advocacy by Dr. Marsha Hurst and myself with this question in mind. We initially posited that by reading narrative accounts of illness and disability, health advocates could be trained in a deeper understanding of the individuals with illness and disability with whom they would work in the future. Part of the inspiration for such a course was the then burgeoning field of narrative medicine, a term coined by Columbia University physician and literary scholar Dr. Rita Charon. Therefore, our initial inclinations were to privilege the written text, as well as the individual experience. However, these notions were quickly challenged when we considered the needs of the students in the Health Advocacy program, who have historically brought a wealth of professional and personal experience in health care, illness, and caregiving. We would have to construct a course that not only drew from narrative texts, but personal reflection, a course in which students could read, write, discuss, and share, a course in which they would have a chance to enter the well crafted narratives of gifted writers as well as the raw and in-the-moment narratives of ordinary individuals. The course would additionally address the social, cultural, and political contexts of illness, the relationships of the ill to their caregivers, and the experience of illness in families, communities, and societies... Read the full article

Health Advocacy Bulletin Fall 2006

In This Issue:

  • Educating for Advocacy
  • The MergerWatch Project
  • Lois Sternberg is named Prize Fellow
  • Healthcare Now! Internship
  • Letter from the Director
  • Special Insert: Health Advocates Association Shelter Rock Retreat on Health/Patient Advocacy

Educating for Advocacy: Using Patient Voice to Construct a Model of Theory and Practice (excerpt)

by Constance Peterson, HA '94, Faculty, Health Advocacy Program

While the past few decades have brought great advances in medicine and technology, these advances have occurred within a healthcare system comprised of complex bureaucracies organized more for the benefit of service providers than patients, families or consumers. Health profession educators are in a unique position to ques tion whether these trends best serve patient interests by using education to move the system to a more patient centered focus. The delivery of quality healthcare in a patient centered system is dependent on attention to patient voice; issues of empowerment, autonomy, access and education are integral to the care itself.

Education of the health advocate is distinguished from other health professional education by our attentiveness to the centrality of voice. HAP students come to understand the patient’s voice through privileging their own experience, fieldwork contact with patients and providers, and integration of voice into a core curriculum. Students are challenged to find their own voice as health advocates and to acquire essential knowledge about themselves by engaging in self-reflection and becoming more comfortable with ambiguity, uncertainty and multiple perspectives... Read the full article

Health Advocacy Bulletin Fall 2005

In This Issue:

  • Letter from the Director
  • Health Advocacy Program in the News
  • Health Advocacy Faculty News
  • HAP Grants for Curriculum Development and for Research
  • Recent Graduates and New Careers in Advocacy
  • Three Health Advocacy Students Earn Awards
  • Special Insert: Executive Summary from Health Advocates in Research: A Participatory Conference

Letter from the Director (excerpt)

by Marsha Hurst

As you can undoubtedly tell from these brief but news-filled pages, the Health Advocacy Program has had an incredibly busy and productive and exciting year. It really began with the 25th Anniversary Conference held last January on “Advocates in Research," the Executive Summary of which forms the bulk of this Bulletin. The Conference was extremely successful and very timely, connecting not only with growth in the area of advocacy—as witnessed by some of the new careers noted in our section on graduates—but with our application to the Ford Foundation, via the Council of Graduate Schools to develop a new program in Applied Research Ethics (see Rachel’s article in this Bulletin). We are now planning our second annual conference, on an equally timely and important subject: “Advocacy & Genetics: Arenas of Engagement” (see Save the Date announcement). More and more prospective students come to us with an interest in combining advocacy and genetics, if not by earning two degrees, then by taking courses that integrate the two fields.

By holding these conferences, Health Advocacy is bringing advocates together here at Sarah Lawrence College. But we are also bringing our experience and understanding about advocacy and educating advocates to others by presenting papers, and by being part of a new networking movement among advocates and educators of advocates. We have been particularly excited about and fulfilled by the discovery of new colleagues in the advocacy education area: JoAnne Earp and her assistant Elizabeth French at the School of Public Health, University of North Carolina in Chapel Hill, and Meg Gaines, at the Center for Patient Partnerships, University of Wisconsin Law School. Meg teaches patient advocacy in the classroom and the “clinic” to any interested graduate and professional student at the University; and JoAnne and colleagues are developing patient advocacy courses for public health graduate students at UNC. We will report more about the work of these colleagues, and about the ways in which patient and health advocates are connecting with each other for common purposes, in future Bulletins... Read full article

Special Insert:

Executive Summary from Health Advocates in Research:
A Participatory Conference

On January 14, 2005, more than 100 health advocates gathered at Sarah Lawrence College for a day-long participatory conference on “Health Advocates in Research.” This was the first in an annual series of conferences about current health issues and new arenas of advocacy. The conference celebrated the 25th anniversary of Sarah Lawrence’s pioneering Health Advocacy Program.

The organizing committee for the conference represented many different institutions and concerns. Attendees included advocates working in research settings; members of voluntary associations; advocates from disease-specific and issue-oriented organizations; advocates from government programs and institutions; educators; and the students, faculty, and graduates of Sarah Lawrence’s Health Advocacy Program.

The consensus of the planners was that the conference met a strong need for health advocates involved in research to exchange ideas and experiences, reflect, and envision the future. They decided to focus on two core questions:

  • What are the roles of health advocates in research and what should these roles be?
  • What ethical principles should guide our participation in research?

The morning sessions explored the roles of health advocates; afternoon discussions centered on ethical issues. At the end of the day, the major points that came out of the conference were summarized by Ngina Lythcott, Dean, Mailman School of Public Health, Columbia University. Byllye Avery, founder of the National Black Woman’s Health Project, closed the day on a high note with a “Call to Action.”

To read more about Health Advocates in Research, download the four page Executive Summary.

Health Advocacy Bulletin Fall 2004

Special Issue: Health Advocacy and Human Genetics

In This Issue:

  • Barth Syndrome—Responding to a Genetic Disorder: A Case Becomes a Cause
  • Introducing our Guest Editors
  • Debating Autism
    • Autism: Piecing the Puzzle—Together
    • A Response: Vaccine Safety and Autism: The System Is “Broke,” Let’s Fix It
    • A Brief Reply
  • In Search of Common Ground: A Survey of Publicly Sponsored Debate About Genetics and Reproduction
  • Race and Genetics: Not a Matter of Black and White
  • Genetic Privacy—What’s Happening at the Federal Level?
  • Eugenics, Reprogenetics and Newborn Screening: A Valuable Day of Discussion
  • Genetics and Health Advocacy: A Dual Degree for 21st Century Healthcare
  • Advocates and Genetic Counselors, Unite!—An Internship at The March of Dimes Pregnancy and Newborn Health Resource Center Lays the Foundation for Future Genetics Advocacy Initiatives
  • Clinical Research and Tissue Banking: An Ethics Perspective
  • Researching Genetic Conditions on the Internet
  • From the Health Advocacy Program Director
  • From the Human Genetics Program Director

Responding to a Genetic Disorder: A Case Becomes a Cause (excerpt)

by Katherine R. McCurdy, founding Board Member of the Barth Syndrome Foundation, Inc.

It was a Saturday in April 1988 and my mother-in-law’s 70th birthday. Unbeknownst to her, the entire family was arriving from around the country to celebrate. Our only hitch was minor, we thought: our two-year-old son had a cold and had awakened early, crying and uncomfortable. When we picked him up, he seemed OK (except for some congestion), but my husband and I immediately noticed that his chest was heaving visibly with every rapid heartbeat. As morning broke, I called the pediatrician to ask if he could squeeze us in, which he graciously did. Upon examination, the doctor agreed that my son, Will, did not seem in distress; he was concerned, however, that Will might have an infection that would require intravenous antibiotics. He instructed me to go to our regional tertiary care hospital’s Emergency Room where the Chief of Pediatric Cardiology, whom he had already alerted, would meet us. As he spoke, I heard the first of many medical terms that were completely new to me that day—”tachycardia.” We were already aware of some mysterious gross motor problems that our son had exhibited, but we had taken him to many of the best medical centers up and down the East Coast, and none of the top-notch specialists had been able to make a diagnosis. Anything cardiac was new. I remember wondering in the ER whether all this might lead to something bigger and broader. Little did I know that we were embarking on the journey of a lifetime... Read the full article

Health Advocacy Bulletin Fall 2003

In This Issue:

  • Beyond the Bull’s-Eye: Advocates Take Aim at Lyme Disease
  • Hearing Voices: Critical Underpinnings for Health Advocacy in a A Complex World
  • Medical Errors: The Role of the Patient Representative
  • What’s a HAP Intern Doing in a Maximum Security Prison? Teaching...and Learning
  • Breast Cancer Survivor Influences Research and Public Policy Processes
  • Developments in Human Research Protection
  • A Friend in Need: How a Small Program Can Make a Big Difference
  • New HAP Group Focuses on Health Policy
  • Working Together To Improve the End-of-Life Experience
  • Communicating with Children and Adolescents with Life-Limiting Conditions: A forum co-sponsored by the Health Advocacy Program and the Westchester (NY) End-of-Life Coalition
  • From the Health Advocacy Program Director

Beyond the Bull's-Eye: Advocates Take Aim at Lyme Disease (excerpt)

by Yvonne Bokhour

How much do you know about Lyme disease? Are you aware of its symptoms? Do you believe blood tests are reliable? How quickly do you think Lyme can be cured? Many of my neighbors have discovered the answers to these questions the hard way. They are ill, or their children are ill, or both. As they try to cope, they find themselves immersed in two battles: the fight to be well and the fight to be heard.

Lyme disease is an illness shrouded by uncertainty and controversy. Disagreements abound within the medical community, leaving patients caught in the middle. Their anguish, especially as Lyme proliferates nationwide, points to the urgent need for research.

In 1997, a tiny group of neighbors met in Wilton, Connecticut. We were all victims of the illness, and we were all worried by its spread. We were especially troubled by the threat Lyme posed to our children, who were exposed to ticks every day. To prevent more cases and help those afflicted, we arranged a seminar. Although we knew Lyme was prevalent, we were astonished by the turnout: 650 people filled Middlebrook auditorium. Volunteers soon found themselves fielding desperate calls from patients throughout Wilton, the tri-state area and indeed the nation. The Wilton Lyme Disease Support Group was then established to comfort those in need. Three years later, we launched a group for young people. Today, both are committed to providing emotional support to adults and teenagers in Fairfield County and beyond. Five hundred victims have now passed through our doors... Read the full article

Health Advocacy Bulletin Spring 2003

In This Issue:

  • Treading Firmly Through the Medical Minefields: How a Personal Odyssey Led to a Lifework of Advocacy
  • Health Advocacy Students in the Field
  • Medicare Prescription Drug Coverage: Going, Going…Where?
  • Sarah Lawrence Hosts Seminar for Journalists
  • New Communication Mini-Course Debuts
  • HAP Graduate Named SLC Associate Dean
  • No Medicare Prescription Drug Benefit from this Congress
  • Humanizing Cancer Treatment: Patient Advocates Can Make the Difference
  • SHCA Convenes in Washington, D.C., for its 32nd Annual Conference
  • From the Ethics Files
  • From the Health Advocacy Program Director

Treading Firmly Through the Medical Minefields: How a Personal Odyssey Led to a Lifework of Advocacy (excerpt)

by Maggie Hoffman

I never realized that I was practicing for a lifetime of caregiving and advocacy when my father was diagnosed with acute myelogenous leukemia. After exhausting standard treatments, my Mom and I began looking into other options. I found myself selling my Dad to researchers: “I have a 53-year-old male who is extremely motivated, with great insurance and the ability to travel cross country.” I had to learn medical terms and scientific concepts in order to gain opportunities in research protocols. My Dad received an autologous bone marrow transplant in Seattle and, months later, he was using an experimental, tiny, constant-infusion pump to receive small doses of chemotherapy 24 hours a day.

In truth, advocacy skills were far more necessary on a day-to-day basis, as no one is taught how to be a patient, a consumer and a self-advocate before entering the healthcare system. Family caregivers have to become advocates by proxy. In my case, that translated into: decorating the hospital room with posters from home so that my Dad would be more comfortable, checking the medications before he took them, asking a doctor to wait until he was awake before telling us the next plan of action. It was so important to keep my Dad in the decision-making loop, even when he was feeling weak and ill, even after he had a stroke and was "not himself"... Read full article

Supplemental information for this issue:

Health Advocacy Bulletin Summer 2002

In This Issue:

  • The Protection of Human Research Subjects in Clinical Research
  • Theresa Foster: First Porrath Fellow in Patient Advocacy
  • Casey E. Warren is HAP’s 2002 Porrath Fellow in Cancer Patient Advocacy
  • Fly on the Wall: My Visit to the Downstate IRB
  • Gender and Quality of Care—Comparing East and West
  • Report from the SHCA Annual Conference, Spring 2002 Washington, D.C.
  • The Paradox of Cuba
  • HAP in Cuba, January 2002
  • October College 2002: Focus on Wellness and Illness
  • Manual to Evaluate Quality of Care from a Gender Perspective
  • Faculty Spotlight: Sayantani Das Gupta
  • Health Advocacy and 9/11
  • A First-Hand Account of the Catastrophe in New York City
  • Foundation Honors Judy Keane’s Husband
  • My Experience at Ground Zero
  • Things Will Never be the Same
  • From the Ethics Files
  • News for Advocates: What you don’t know can hurt you
  • From the Health Advocacy Program Director: The Cuban Health Systrem and the American Public’s Health

The Protection of Human Subjects in Clinical Research (excerpt)

by Ruby H. Greene

In the biomedical context, therapy ordinarily refers to a set of activities whose primary purpose is to relieve suffering and to restore or maintain health. The foremost goal is for the recipient to benefit medically from the new drug, vaccine, treatment or diagnostic procedure being tried. By contrast, research or experimentation refers to a set of activities whose primary purpose is to develop or contribute to generalized knowledge about the chemical, physiological or psychological processes involved in human functioning. Its aim is to provide information required by the researchers.

Biomedical experimentation using human subjects falls into four broad categories: therapy, research, therapeutic treatment, and non-therapeutic treatment. All such experimentation, whatever its purpose, raises serious ethical challenges and concerns. These include recruitment and payment of human research subjects, justification for payment, payment models, finder’s fees, and risks to subjects. The question raised by all these practices is: Does informed consent adequately protect the patient, especially the disadvantaged patient, from economic exploitation? (Lind, 1990)... Read the full article

Health Advocacy Bulletin Spring 2001

In This Issue:

  • Is There a Health Care Safety Net in Westchester County?
  • The Patient Eye
  • From the Editor: Let’s Not Beat About the Bush: The New Administration Is Not On Our Side
  • Lupus Advocacy Complicated, Challenging
  • Correspondence: Impressions of a Bankrupt Hospital
  • An Unusual Placement Experience: The Center for Multicultural and Minority Health
  • Sociocultural and Linguistic Barriers in an Urban Academic Outpatient Practice: Observations from Doctors in Training
  • Results of HAP Literacy Study Reinforce Need for Family Health Care Decision Act
  • “Changing Social Policy” Accepted for Publication
  • A First Year Student’s Perspective
  • Yonkers EIC Publishes Beautiful Data Book
  • HAP Student Placements, 2000-2001
  • Director’s Desk
  • Core Competencies Document Authors Seek Input
  • HAP Speakers 2000-2001

Is There a Health Care Safety Net in Westchester County?

by Desiree McDougall

Over 3.2 million people in New York State live uncovered by health insurance. In Westchester County this translates to approximately 200,000 people, a group predominantly comprised of low income families, nonelderly adults, and Latino immigrants. At some point in time all will require health care services. Without these services this population, and in fact society as a whole, may suffer insurmountable morbidity.

Who does this group historically turn to for care? Can these sources of care remain viable in this era of health care finance restructuring? Is this population a prime focus of concern for county or state policymakers? How can health advocates best assist these individuals? These questions were the focus of a conference held March 15, 2001, sponsored by the Westchester Health Action Coalition and moderated by Lois Steinberg, HAP 2000. Bringing together county legislatures, administrators from community health centers and local hospitals, officials from the county Department of Health, and concerned community activists, the conference sought to define the un/underinsured population and examine the current status of their “safety net” providers... Read full article

Health Advocacy Bulletin Spring 2000

In This Issue:

  • Three Decades of Organizing: Observations on the Future from the Past
  • HAP Goes International
  • Searching for Grace: The View from Inside the Cage
  • Health Advocacy on the Little Screen
  • Profiles in Advocacy: Irma LaGuerre
  • Conversation with Flavorful (Alice) Herb
  • Maximum Security Health Advocacy
  • Fordham Professor Bruce Berg Joins HAP Faculty
  • Spring Placements
  • From the Editors
  • Director’s Desk—Opportunities for Advocacy

Three Decades of Organizing: Observations on the Future from the Past (excerpt)

by Terry Mizrahi, Ph.D.

Much of social work at the end of the 20th century has a “back to the future” ring to it. “Community” is back in vogue, as a context and as method and level of intervention. Those of us who began our social work careers in the expansionist era of the 1960s saw community organizing grow within and outside of social work. Yet even then, while it seemed like the place to be, exciting, romantic even, it still represented a small place and minority position in the profession in spite of the rich tradition in which it was embedded. The schisms between clinical and macro level interventions were there even in the friendly times, when it felt like the community organizing/social change perspective had a disproportionate influence on the field, given the relatively few students, faculty and schools with such concentrations.

As the political climate began to shift (and it has been moving to the “right” ever since), the flourish of visible social work activism in schools of social work and in social work agencies quickly diminished. Community organizing was replaced at first with a shift to planning and policy in the 1970s. Then, by the mid- 1980s (with a few exceptions), it almost disappeared as a major area of curriculum and career path, or was submerged within a more constricted administration/management or “macro” track. During this same time period, social work activism was primarily geared to creating a profession, modeled on law and medicine. Its goal, to gain control over the organization, structure, and relationships with clients, saw some measure of success in law and regulation at the federal and state. Currently however, managed care is stifling the autonomy of all clinical professions, including social work... Read full article

Health Advocacy Bulletin Spring 1999

In This Issue:

  • Children and Families in Health Care: Issues for Advocates
  • Giving Opportunity to Youth: An Initiative in Yonkers, NY
  • Children's Health Insurance: Hopes and Hurdles
  • The Pediatric Parent
  • You Have Rights: A Patient Rights Statement for Children
  • Should This Baby Live?: An Ethical Dilemma
  • Genetic Testing in Children: Weighing the Issues
  • Universal Newborn Hearing Screening
  • Poor Access to Care Heightens HIV Transmission Rates
  • Creating a Tobacco Awareness Program for Schools
  • Children's Issues in Westchester County
  • Navigating the Web of Children's Advocacy Sites
  • '99 Graduates: A Vibrant Mix
  • Director's Desk
  • From the Editors
  • Alumnae/i Association

Children and Families in Health Care: Issues for Advocates (excerpt)

by Linwood J. Lewis, Ph.D.

In the three years 1993 through 1995, there were 165 million health care visits by children less than 15 years of age, of which 37 million were hospital visits. Eighty-five percent of these children were in health care for illness or injury. (NCHS, 1998) What happens when these children enter into the health care system? How can we best maximize appropriate care for children?

Children entering the health care system must negotiate the same bewildering maze of medical procedures, medical jargon, personal fears of pain and death and bodily dysfunction as adults. Yet children have less control over their health care and often less cognitive resources to help them to understand and process their experiences. Health care providers, parents and guardians often find it difficult to come to a consensus on the proper treatment of children in the system. These factors increase the vulnerability of children and can lead to less successful treatment outcomes. I would like to alert health advocates to some of the important issues concerning children in health care. My comments are probably most relevant for direct service advocates working with children presenting with a chronic condition, or pediatric inpatients... Read full article

Health Advocacy Bulletin Fall 1998

In This Issue:

  • Really Caring: Why a Comprehensive Healthcare System Includes the Arts
  • Holistic is an Adjective ... Not a Noun
  • Perioperative Audiotapes: Audio Rx for Surgical Patients
  • Musical Therapy in Hospice Care
  • Sanctuary Gardens: Roots—Words—Meaning
  • Assistance Dogs in Medical Facilities
  • Animal Assisted Therapy
  • Holistic Nursing: Nurturing and Balance
  • One Pathway to Pain Management
  • Massage: Mystique, Managed Care, and Money
  • Patients Rights Legislation: Elusive or Illusion?
  • A New Medical Specialty: Good for Patients?
  • Director's Desk
  • From the Editors
  • Advocacy Online

Really Caring: Why a Comprehensive Healthcare System Includes the Arts (excerpt)

by Susan Perlstein, M.S.W.
(Excerpted from an article in High Performance and reprinted by permission from the author)

You can gauge the humanity of a society by the way it treats its young and old, to paraphrase a familiar quote from Dostoyevsky. Holding the U.S. healthcare system to this yardstick, it's clear we're not very humane. For example, the healthcare system for an aging population in New York City provides senior centers for well elders, adult day healthcare centers for those still mobile, nursing homes for the frail, hospital and hospices for the sick and dying. But most of these institutions treat aging as a disease rather than a natural process. They emphasize a medical rather than a social approach, often reducing people to their medical "condition". Diseases are treated, not human beings.

A system that really cares for people should sustain their well-being in their communities, and provide a continuum of care from birth to death. This social model uses each person's individual strengths and integrates him or her into a support system that provides for emotional as well as physical needs. Arts programs can do this by tapping into all aspects of a person's well-being. Thus, a comprehensive healthcare system includes the arts... Read full article

Health Advocacy Bulletin Spring 1998

In This Issue:

  • Rediscovery of the Grassroots: Radical or Reactionary Trend?
  • The Greening of a Health Advocacy Organization
  • Polly Rothstein: Clout and Credibility
  • “A Remarkable Thing Happened in Chambersburg, PA”
  • Amputee Support Groups: Patient Advocacy In Action
  • Thriving in a Small Community: The Ithaca Breast Cancer Alliance
  • Grass Roots = Cutting Edge
  • Self-Empowerment: The Independent Living Movement
  • Family Caregivers Take Charge
  • Rally for America’s Health
  • Joan Marks to Retire
  • Congratulations, 1998 Graduates
  • From the Editors
  • Advocacy Online

Rediscovery of the Grassroots: Radical or Reactionary Trend? (excerpt)

by Terry Mizrahi, Ph.D

Politicians, professionals and patients seem to have all rediscovered the virtues of so-called “self-help” and grassroots activities or what in the 1970’s Alan Gartner and Frank Riessman identified as the “a professional dimension of helping” and Harry Boyte labeled the “backyard revolution.” This active formation of consumer and community groups has had multiple purposes over the years: providing support, raising consciousness, increasing resources and changing policies; or in the language from Health Advocacy Course I, promoting "case/individual and cause/class advocacy.” To this end, I applaud the many wonderful examples of groups described in this issue, many initiated by alumna of the Sarah Lawrence Health Advocacy Program and their colleagues. These are illustrations of innovative programs advanced by committed and competent professionals.

However, I would like to raise a few caveats, and caution leaders and participants as they advocate for and plan such activities. We are in an era of political and economic conservatism. This has led to a retreat in the government role in meeting human needs, a retrenchment of government-funded benefits and services, a take over of health and human services by the private, corporate sector, and even a redefinition and reframing of health care needs and services so that the public ultimately expects and demands less from their employer, their community and the state. It is also an era of downsizing and deprofessionalization while many public officials advocate for personal responsibility... Read full article

Health Advocacy Bulletin Fall 1997

In This Issue:

  • A Managed Care Bill of Rights
  • Profile: Sue Kelly
  • Political Advocacy: It’s Better to Give
  • Advocacy “By the People”
  • New York CAN! Seeds of Political Action
  • New Pap Technology
  • Organ and Tissue Donation
  • HAP on the Road
  • U.S. Supreme Court On Assisted Suicide
  • UHCAN! Back to Basics
  • From the Editors
  • Legislative Update

A Managed Care Bill of Rights (excerpt)

by Rachel Grob, M.A.

The rapid conversion from fee-for-service to managed care service delivery models in both the public and private sectors is causing seismic shifts in the health care system. Combined with and further propelling the existing movement away from in-patient and towards ambulatory care, this change augers a concomitant shift in the focus and practice of health advocacy. The need for both “case” and “class” advocacy is and will be greater than ever since cost saving is the primary motivation behind managed care, and since such saving is achieved primarily by restricting utilization (a potential conflict with what’s optimal for the enrollee) and forcing providers to compete on the basis of price (a potential impediment to the development of high-quality delivery systems). But how can the advocate protect the interests of patients and promote the delivery of high-quality services in this tightly controlled, geographically dispersed environment?... Read full article