A Briefing on Families and Health

The topic families and health includes a wide range of health related issues. Briefing meetings were held with Vice President Al Gore in an attempt to establish pressing concerns facing public health and policy in the country. Experts were gathered together to discuss various issues such as how to build healthy communities, healthy families and the role of policy in helping to support what is already working. This section features several of the health experts, their ideas related research and articles. Please take the time to explore their research and ideas.

Polly Arango
Co-founder/Director of "Family Voices", and a member of the Secretary's Advisory Committee on Infant Mortality.
Harry R. Jacobson
Vice Chancellor for Health Affairs and Professor of Medicine, Vanderbilt University of Medicine Center.
Robert Wm. Blum
Professor and Director, Division of Pediatrics & Adolescent Health, University of Minnesota, Chair of the Children, Youth, and Family Consortium.
Beverley H. Johnson
President and CEO, Institute for Family Centered Care and former pediatric patient in chronic care.
Christine Cassel
Professor and Chairman, Henry Schwartz Dept. of Geriatrics and Adult Development.
Judith Katz-Leavy
Senior Policy Analyst, Office of Policy, Planning and Administration, Federal Center for Mental Health Services.
Jeffrey Cole
Director, UCLA Center for Communication Policy. Principal Investigator of the Network Television Violence Monitoring Project.
David B. Kendall
Senior Analyst, Health Policy and Director of Health Priorities project at the Progressive Policy Institute.
Karl Dennis
Executive Director, "Kaleidoscope", Chicago. IL.
S. Robert Levine
Chairman, Progressive Policy Institute's "Health Priorities Project". Founder of "Health Corporation".
Paula Duncan
Maternal and Child Health Director, State of Vermont Department of Health; Division Director for Health Improvements.
David J. Lansky
President of "FACCT", the Foundation for Accountability.
Barbara J. Friesen
Director, Research and training Center on Family Support and Children's Mental Health. Professor, Graduate School of Social Work, Portland, OR.
Anne McGinntis
Developed "Parent College", Chattanooga Tennessee. Child educator and counselor.
Margaret Hamburg
Assistant Secretary for Planning and Evaluation of Dept. of Health and Human Services.
Michael L. Millenson
Author, Visiting Scholar, Northwestern University's Institute for Health Services Research and Policy Studies.
Val J. Halamandaris
President, National Association for Home Care, Director General, World Home Care and Hospice Organization.
Irwin Redlener
President and co-founder of The Children's Health Fund. Vice President for the Children's Medical Center, Director of the Child Health Network and Director of Community Pediatrics at Montefiore Medical Center. Professor of Pediatrics, Albert Einstein College of Medicine and Lecturer in Pediatrics at Harvard Medical School.
Christine Harper Seitz
Vice President for Clinical Operations of the newly merged Children's Hospital's of St. Paul and Minneapolis, MN.
Helen M. Sandalls
Specialist in Medical ethics law, Phoenix, AZ.
Ruby P. Hearn
Senior Vice President, The Robert Wood Johnson Foundation.
Lawrence N. Shulman
Vice-chair for Clinical Services Dept. of Adult Oncology, Dana-Farber Cancer Institute, Boston, MA.
Barbara Huff
Executive Director, Federation of Families for Children's Mental Health.
Naomi Tannen
Human Services Consultant, Burlington, VT.

Polly Arango

"The families and friends of Family Voices, 15,000 strong, know and live family-centered health care every day. Our children with special health care needs require consistent, loving, quality care at home, at school, in the hospital, in clinics and doctor's offices, and in the community. Our goal at Family Voices is to ensure that family-centered care, which makes sense to families and which, when practiced, reflects the highest standards of the health professions, is available to every child in this country, including our 12.6 million youngsters with special health care needs. If family-centered care is to be a reality for all citizens, we must:

Acknowledge that the family is the primary caregiver, 24 hours a day, in sickness and in health, at home or in a health care setting;

Ensure that all families have access to quality, objective information about health systems, health resources, and healthcare financing from family-friendly people in their communities and states and through electronic sources;

Build strong, respectful partnerships between families and health care professionals so that health practices and policies honor and reflect the expertise that each brings to the practice of quality health care;

Try our best to assure that everyone in this country receives affordable, quality health care, no matter where they live or work, no matter their health condition, no matter their financial status."

Polly Arango lives in Algodones, New Mexico, and has four children; the youngest, Nick, has multiple disabilities. For the past 15 years, Polly has been an advocate for children in New Mexico and across the country with a focus on youngsters who, like Nick, have special health care needs. In 1992, with many national parent leaders, Polly co-founded Family Voices, a national grassroots network of more than 14,000 families and friends working to improve health care for children with special health needs through family-centered care practices. A writer and speaker, Polly now directs Family Voices and is a member of the Secretary's Advisory Committee on Infant Mortality, serves on the American Academy of Pediatrics Committee on Children with Disabilities, sits on the Steering Committee for the 5th International Congress on Serving Children with Disabilities in the Community, was a member of the National Commission on Childhood Disability/SSI, and serves on many national boards and task forces related to children with special health care needs.

In New Mexico, Polly is co-founder, and former chair of the Child and Adolescent Legislative Continuum and of Parent Reaching Out, the statewide organization of families who have children with special needs. She serves on the New Mexico Developmental Disabilities Council, and is a board member of New Mexico Advocates for Children and Families and El Pueblo Health Services, a rural community health center.

Articles, Related Research, Links

  1. Family-Centered Health Care: A Revolution That Improves Pediatric Health Systems
  2. 1998 Promises To Our Children With Special Health Care Needs
  3. Alphabet Soup: Health Care Definitions For Children With Special Health Care Needs
  4. Family Voices. A national grassroots network of families and friends speaking on behalf of children with special health care needs.

Robert Wm. Blum M.D., M.P.H., Ph.D.

"As a society we have long held the belief that as children mature through the teenage years parents become less critical to their health and well-being. Recent research shows otherwise. We need to help parents develop the communication skills to help their adolescent children make good choices. For young people with complex health needs, families need assistance in helping their teenage children transition from school to work, from pediatric to adult health care, from home to independent living and from family dependence to mutual adult relationships."

Robert Blum, M.D., Professor and Director of the Division of General Pediatrics and Adolescent Health at the University of Minnesota received international acclaim for the study recently released on the importance of the parental role in the social, academic and emotional health of adolescents. Editor of two books, over 150 articles and reports, he is past president of the SAM, serves in leadership roles in the Guttmacher Institute and the national Campaign to Prevent Teen Pregnancy, and consults with UNICEF and other international organizations.

Articles, Related Research, Links

  1. Protecting Adolescents from Harm
  2. Morbidity and Mortality Among U.S. Adolescents: An Overview of Data and Trends
  3. Don't Ask, They Won't Tell: The Quality of Adolescent Health Screening in Five Practice Settings
  4. "Bet You I Will!" Risk or Experimental Behavior During Adolescence
  5. Critical Issues for the Family Research Agenda and their Use in Policy Formulation
  6. Breaking the News: How Families First Learn About their Child's Chronic Condition

Christine Cassel, M.D., M.A.C.P.

"One of the most dramatic changes occurring in families in the twentieth century has been the increasing longevity of Americans. Families can now routinely expect their older members to survive well past their sixty-fifth birthday, and in many cases, well past their eighty-fifth birthday. Many of these later years are healthier than ever before in history, but that health needs to be sustained by healthy lifestyles, and good medical care. It is also inevitable that in older years some people become frail and develop chronic illnesses requiring them to be dependent on family members for support, activities, and often for fundamental care.

The positive side of increasing longevity is that people of all ages can reasonably expect a good long life. This also means that we will see more and more multigenerational families with grandparents and great-grandparents able to spend meaningful time with their grandchildren and great-grandchildren. It also means that multigenerational families will be able to develop ties to help each other with things as diverse as child care, financial support of education, starting up of a household or a marriage. Currently, in the United States the majority of wealth transfers are still from older generations to younger generations rather than the other way around. Unfortunately, because the success of our aging society has led to growing costs in Medicare and Social Security the popular press often portrays older people as a growing burden on society and on their families. In fact, research shows that, to a large extent, older people are contributors to younger generations in terms of financial support as well as in terms of other kinds of informal help. Since the aging of society is an unprecedented reality in human experience, it is a major challenge to construct social structures that will support successful aging and allow people to remain as functional as possible into their later years. Social programs, along with private initiatives that can do this will also benefit other generations as well as the elderly themselves. People are connected in families more intensely than they are in generations. If support is lost for medical care or retirement support for older people it is the adult children in those families who will end up bearing the burden and be unable to afford other support for other members of the family, including younger generations. Thus, the well-being of all generations is tied together. Policies that are healthy and productive for an aging society must be policies that are positive for all generations."

Christine Cassel, M.D., M.A.C.P., is Chairman of the Department of Geriatrics and Adult Development of Mount Sinai Medical Center, New York, and Professor of Geriatrics and Medicine. Previously Chief of General Internal Medicine at the University of Chicago where she was Professor of Medicine and Public Policy Studies, Chief of the Section of General Internal Medicine, Director of the Center on Aging, Health and Society, Director of the Center for Health Policy Research, and Director of the Robert Wood Johnson Clinical Scholars Program. Among her numerous publications are three textbooks on geriatrics and medical ethics. In March of 1997, Dr. Cassel was appointed to the President's Advisory Commission on Consumer Protection and Quality in the Health Care Industry. She is past President of the American College of Physicians, Physicians for Social Responsibility, and the Society for Health and Human Values. She has served as a consultant to the VA, HCFA, the National Institute on Aging, the Agency for Health Care Policy and Research, and the US Congress.

Articles, Related Research, Links

  1. The Goals of Medicine in an Aging Society
  2. In Sickness and in Health. A commencement address delivered to the graduating class of the Mount Sinai School of Medicine on May, 16, 1997.
  3. Measuring Quality of Care: new focus on a difficult task
  4. Medical Responsibility and Global Environmental Change
  5. Internists' and Surgeons' Attitudes toward Guns and Firearm Injury Prevention
  6. Profiles in Responsibility
  7. The Price of Success: Health Care in an Aging Society
  8. Making the case for funding health services research
  9. The new health care bill of rights: making it stick
  10. Quality of Care Oversight: What's Good About It for Physicians
  11. Policy Implications of the Human Genome Project for Women
  12. The Right to Health Care, The Social Contract, and Health Reform in the United States
  13. What Internists Need to Know: Core Competencies in Women's Health

 

Jeffrey Cole

"Being in Communication, I feel the most important issues in families and health and health is that doctors and the medical establishment include families as an integral part of the medical process rather than as a burden or obstacle. Clear and ongoing communication between doctors and families not only makes everyone a partner in the process and avoids unnecessary problems, it also has been shown to be an important step to maintaining good health and improving medical problems when they develop.

We have become a regular part of the Family Reunion "family" because we believe that it more than any other activity or conference takes on an essential family issue in a major way each years and directly leads to improved policy (which is what the center was created to do as well). It is an honor to work with Bill, Marty, Nancy and the Vice-president on such an important project."

Jeffrey Cole has been on the UCLA faculty for the past 22 years and serves as the Director of the UCLA Center for Communication Policy. He is Principal Investigator of the Network Television Violence Monitoring Project which in 1995, 1996 and 1997 issued annual reports to the television networks, Congress and the nation. Upon the release of the 1996 report, Cole held a joint press conference with President Bill Clinton who referred to the Center for Communication Policy as "the premier educational institution setting trends in entertainment." Cole has testified before Congress on television issues and has spoken as a keynote and panel member at over 100 conferences on communications issues. In May of l994, 1995 and 1996 the Center co-authored with U.S. News & World Report national surveys examining attitudes and values of decision-makers in the entertainment industry. In 1994 the Center co-sponsored "The Superhighway Summit" at UCLA with keynote speaker Vice President Al Gore and the leaders of most of the nation's major media companies. Cole has produced films opening the 1995, 1996, 1997 and 1998 Family Reunion conferences. Over the past three years the Center has sponsored or co-sponsored national conferences on religion and prime time television, television and advocacy groups, and children and the media. Cole has lectured in Canada, Japan, France, Germany, Britain and throughout the U.S. He regularly consults with governmental leaders throughout the world on communications issues. He recently was appointed to the Executive Committee of the Academy of Television Arts & Sciences (ATAS).

Articles, Related Research, Links

Karl Dennis

"When public agencies and communities come together to develop a common vision for the future of our children and families, then services thrive. If either party is left out of this process, the vision is lost and our youth suffer the consequences."

Karl Dennis has been the Executive Director of Kaleidoscope Inc. in Chicago, Illinois for the past twenty-two years. His agency was recently selected as of one of the top five child serving agencies in the country by the prestigious Chesapeake Institute in Washington DC. Karl is considered one of the country's leading experts on community-based care and a pioneer of wraparound services.

Mr. Dennis was one of the national founders of Intensive In-Home Services and Therapeutic Foster Care. Under his direction, Kaleidoscope was one of our country's first agencies to implement a pediatric AIDS treatment foster care program, which has become a highly regarded role model across the nation. He has taught and lectured at Harvard and Yale Universities and has presented in 49 states. In addition he has helped orchestrate state initiatives to return children from out-of-state placements and has provided services to thousands of children and their families since 1973.

A popular lecturer and consultant, Mr. Dennis has contributed his vast knowledge of community-based care to individuals and agencies across the United States and several foreign countries. He serves on the John F. Kennedy School of Government, Harvard University, Executive Session to develop an alternative plan for child protection in this country. Mr. Dennis is a member of the "Friends" of the Federation of Families, and received their "Making A Difference Award" in 1995. Karl was also the recipient of the "Marion F. Langer Award" for his national advocacy on part of children and families from the American Orthopsychiatric Association, and the Life Time Achievement Award for WrapAround Services.

Articles, Related Research, Links

Paula Duncan

"Family centered care provides a strength based approach to recognizing and enhancing family members as the experts in family decision making that they are. When balanced information is communicated in an affirming way, the resulting partnership between families and health care providers can accomplish great things. How do we take these concepts and apply them more generally to all children and youth in all families? Partnerships."

Paula Duncan, MD, Maternal and Child Health Director for the State of Vermont Department of Health, is also the Division Director for Health Improvements. A pediatrician with a sub-specialty fellowship training in Adolescent Medicine and Neonatology, Dr Duncan was on the Pediatrics faculty at Stanford Medical School and is currently Clinical Associate Professor of Pediatrics at the University of Vermont. Her research focus was the development and parenting of healthy adolescents. She has been instrumental in the development of a K-12 health curriculum, "Success by Six" and increased medical coverage for school age children.

Appointed Chair of the American Academy of Pediatrics School Health Committee, she has authored chapters on health for parents and students. In 1996 she was awarded a Primary Care Policy Fellowship by the US Public Health Service.

Articles, Related Research, Links

  1. Family centered care. Provideing a strength based approach to recognizing and enhancing family members as the experts in family decision making.

Barbara J. Friesen, Ph.D.

"First, all families must have access to affordable health care. In addition, we need to move from "program-centered" or "corporation-centered" to "family-centered" care. Families must have the opportunity to participate fully in planning, implementing, and evaluating health, mental health, and social services in partnership with health care and other professionals. At the child and family level, full participation means access to accurate information, choice about both the content and means of service delivery, and the opportunity to have their feedback about services heard and promptly acted upon. Families should also be central participants in the design of service delivery systems, so that their needs and preferences are visibly reflected in health care services. At the policy level, let's work toward having a "family impact statement" (like an environmental impact statement) attached to every proposed piece of social or legislation."

Dr. Friesen is the Director, Research and Training Center on Family Support and Children's Mental Health, and Professor, Graduate School of Social Work, at Portland State University in Portland, Oregon. She is currently conducting research related to family participation in mental health and other service settings, and an evaluation of an intensive case management system for children with serious emotional disorders. Her practice experience in the field of mental health includes a variety of residential and community programs serving adults as well as families and children.

Dr. Friesen's overall professional focus is on improving social and mental health delivery systems through research and advocacy. Since 1984 she has been involved in systems change efforts on behalf of children who have emotional, behavioral, or mental disorders and their families. Major activities include the "Families as Allies" project, designed to promote partnerships between family members and service providers, and other projects undertaken to promote and support the organization of family members at local, state and national levels. Dr. Friesen has published extensively in the children's mental health area on topics such as parent-professional relationships, family support, family-centered service, family members in service-providing roles, and system change strategies.

Articles, Related Research, Links

  1. Selected references on family centered care and family participation
  2. Research and Training Center on Family Support and Children's Mental Health, Portland State University

Val J. Halamandaris

"It seems to me that America, the most wealthy and most caring nation on earth - that nation that can raise billions of dollars to support the starving children of Ethiopia - cannot turn its back on the millions of American children within our midst. The decision we make on this vital question will determine whether America ranks with the great civilizations of the world."

Val J. Halamandaris has served since 1992 as the President of the National Association for Home Care (NAHC) and is Director General of the World Homecare and Hospice Organization. Under his leadership, NAHC has increased its membership from 400 to more than 6,000 home care agencies and hospices.

Mr. Halamandaris previously served for five years as Counsel to Representative Claude Pepper’s House Select Committee on Aging and for fifteen years as Counsel to Senator Frank E. Moss and the U. S. Senate Committee on Aging. While serving the Congress he authored more than two dozen congressional reports and helped achieve numerous legislative reforms, including legislation creating the Office of Inspector General and the Department of Health and Human Services and creating Medicare fraud units.

In 1985, he was a founder of the Caring Institute, a non-profit organization dedicated to the promotion of caring, integrity, and public service. In 1987, he founded the Center for Health Care Law, a public interest law firm advocating the rights of the elderly, the disabled and chronically ill children. He is editor and publisher of two national magazines, Caring and Caring People. He has also published several books on the U.S. Congress, health care, aging and home care. Mr. Halamandaris received his B.A. degree from George Washington University and his J.D. from Catholic University of America School of Law.

Articles, Related Research, Links

  1. National Association for Home Care. A Brief Description
  2. National Association for Home Care.

Margaret Hamburg, M.D.

"Across the lifespan, informal family care is a vital but often ignored or overlooked aspect of care for persons with chronic illnesses or disabilities who need help with the routine activities of daily life. Two thirds of all long term care is provided totally or in part voluntarily by informal care givers.

I would like to propose that the Vice President consider a focus on Long Term Care, Consumer Directed Services and Family Care giving in conjunction with this year's family reunion and the theme of family centered health care.

As a society, we need to find ways of acknowledging, expressing appreciation for, and supporting informal family care giving."

Margaret Hamburg, M.D., is the Assistant Secretary for Planning and Evaluation at the Department of Health and Human Services. As such, she is the principal policy advisor to the Secretary. Prior to joining the Administration, she was the third woman and youngest appointee ever to assume the post of Commissioner of Health for the City of New York in which she served for six years. She has also been Assistant Director of the National Institute of Allergy and Infectious Diseases (NIAID). She has held academic appointments at Cornell University Medical Center, Columbia University School of Public Health, Rockefeller University, and Georgetown University School of Medicine. Some of her areas of expertise include addictions, AIDS, behavioral science, child development, and environmental health issues.

Articles, Related Research, Links

  1. Family Care Giving Theme for Family Reunion

 

Christine Harper Seitz

Christine Harper Seitz is Vice President for Clinical Operations of the newly merged Children's Hospital's of St Paul and Minneapolis. She is a registered nurse and holds masters degrees in both nursing and business administration. Responsible for leadership, direction and strategic planning for the patient care departments and functions across the system, she is leading a system wide re-engineering effort and co-leading the implementation of a clinical information system focusing on quality, service improvement and cost effectiveness. Family-centered care is a philosophy imbedded across the organization.

Articles, Related Research, Links

  1. Family Centered. The White House Calls and Minnesota Responds

Ruby P. Hearn

"For most of us, concerns about health are concerns about our families. We want our children to be born healthy, develop normally, and live as healthy adults. We want our own aging to be graceful. And we want the security of knowing those we love can get the care they need when they need it. Health care is a family affair.

At the Robert Wood Johnson Foundation, we have worked for more than 25 years to improve the health and health care of all Americans. Much of that work, as evidenced by the programs summarized below, have understood and built on the central role of families in health care."

Ruby P. Hearn, Ph.D. is sr. vice president of The Robert Wood Johnson Foundation, the largest health care philanthropy is the United States. The Foundation has awarded over two billion dollars in grant funds since its inception as a national philanthropy in 1972. As a member of the executive management team, Dr. Hearn participates in strategic program planning with the president and executive vice president and serves as a special advisor to the president and as the Foundation's liaison within the non-profit community. Dr. Hearn has had the major responsibility for oversight and program development of initiatives in maternal, infant and child health, AIDS, substance abuse and minority medical education. Dr. Hearn received her M.S. and Ph.D. degrees in biophysics from Yale University and is a graduate of Skidmore College. She is a Fellow, Yale Corporation. She served on the Executive Committee of the Board of Directors for the 1995 Special Olympics World Summer Games in Connecticut, the Science Board for the Food and Drug Administration (FDA), the governing Council of the Institute of Medicine, the Board of Directors of the Council on Foundations, the Advisory Committee to the Director, National Institutes of Health. Dr. Hearn is a member of the Institute of Medicine, the National Academy of Sciences Committee on Science, Engineering, and Public Policy (COSEPUP), and is also serving on the National Advisory Child Health and Human Development Council (1997 - 2001), National Institutes of Health.

Articles, Related Research, Links

  1. Independent Choices: Enhancing Consumer Direction for People with Disabilities.
  2. Covering Kids: A National Health Access Initiative for Low-Income, Uninsured Children.
  3. Healthy Kids. Replication Program.
  4. Robert Wood Johnson Foundation.

Barbara Huff

"The Federation of Families for Children's Mental Health believes that children with mental health needs and their families should have access to a system of care, coordinated across agencies and designed to provide a full range of individualized services and supports. These services must be available, affordable, accessible and appropriate. We also believe that families should be full participants in the design implementation and evaluation of systems of care at the national, state and community level."

Barbara Huff is the Executive Director for the Federation of Families for Children's Mental Health, a national family-run organization for children with emotional, behavioral or mental disorders and their families. Having developed a statewide children's mental health advocacy organization in Kansas in 1988, she was the first president of the Federation and is herself the parent of a daughter with serious emotional problems. She provides training, workshops and lectures to organizations across the country, and has received numerous awards and represents the Federation on many national boards and task forces.

Articles, Related Research, Links

  1. Claiming Children. Newsletter for the Federation of Families for Children's Mental Health, Winter 1998

  2. State Organizations, Chapters and Representatives Contact List for the Federation of Families for Children's Mental Health

  3. Fact Sheet for the Federation of Families for Children's Mental Health

  4. Principles on Family Support

  5. Principles for Family Involvement in the Development and Operation of Managed Health and Mental Health Care Systems for Children and Youth

  6. Philosophy Statement for the Federation of Families for Children's Mental Health

  7. The Federation of Families for Children's Mental Health web site

 

Harry R. Jacobson

"We are pleased to be able to highlight our Family Resource Center, one of the most complete hospital-based resource centers in the nation. But more importantly, we view the Family Re-Union Conference as an opportunity for Vanderbilt to learn from other health providers as we begin preparations to build what we hope will be the most family friendly children's hospital in the country."

Dr. Jacobson is Vice Chancellor for Health Affairs and Professor of Medicine at Vanderbilt University Medical Center.

Dr. Jacobson received his M.D. from the University of Illinois Abraham Lincoln School of Medicine in Chicago, where he was a member of Alpha Omega Alpha. He completed his residency in medicine at Johns Hopkins Hospital, followed by a Nephrology Fellowship at the University of Texas Health Science Center. He served as Chief of the Renal Section of the U.S. Army Surgical Research Center at Brooke Army Medical Center for two years before joining the faculty of the University of Texas Southwestern Medical Center at Dallas in 1978. In 1985, Dr. Jacobson joined the Vanderbilt faculty as Professor of Medicine and Director of the Division of Nephrology.

Dr. Jacobson's research interests have focused on the mechanism and regulation of renal epithelial cell ion transport and on the renal actions of eicosanoids. He has published numerous articles, editorials and reviews. He has contributed sections or chapters for ten medical textbooks and edits the book, The Principles and Practices of Nephrology, now in its second edition.

Dr. Jacobson is a member of numerous professional organizations, including the American Society of Nephrology, the International Society of Nephrology, the American Society of Clinical Investigation and the Association of American Physicians. He is a founder of Renal Care Group and is a member of its Board of Directors.

Articles, Related Research, Links

  1. The Family Centered Care Program at Vanderbilt Children's Hospital
  2. Vanderbilt Children's Hospital

Beverley H. Johnson

"There is a growing awareness across the nation that our health care system does not work well for many individuals and families. Too frequently health care, though technically proficient, is inadequate. We have not given adequate attention to the process of caring, the way information is shared, the way support is provided.

A family-centered approach to care provides opportunities to develop partnerships with patients and families and build a more responsive, cost efficient health care system. In a family-centered system of care, patients and families are treated with respect and have access to the information and support they want and need.

Family-centered care is transforming long standing patters of interaction among health care professionals and patients and families. These partnerships emphasize collaboration rather than control. They focus on patient and family empowerment rather than dependence. They emphasize program flexibility rather than rigidity.

Family-centered care encompasses every aspect of our health care system. It changes the way health care is provided, the way systems of care are organized, the way hospitals and clinic facilities are designed, and the way health professionals are trained. It changes the way research is conducted and the way care is financed. It is the way to provide quality health care."

Beverley H. Johnson is President and Chief Executive Officer of the Institute for Family-Centered Care in Bethesda, Maryland. She began her career as a direct care provider in a children's hospital, where she developed psychosocial and family support programming. She later served as a trustee of Children's National Medical Center in Washington, D.C., and of the National Association of Children's Hospitals and Related Institutions. Between 1979 and 1992, she was Executive Director of the Association for the Care of Children's Health. She has been the project director of numerous federal and private foundation grants on family-centered issues. She co-authored Maternity Care: Resources for Family-Centered Practice, Newborn Intensive Care: Resources for Family-Centered Practice, Family-Centered Care for Children with Special Health Care Needs, Caring for Children and Families: Guidelines for Hospitals, and Hospitals Moving Forward with Family-Centered Care. She is currently developing patient- and family-centered materials for adult oncology care. Ms. Johnson served as executive producer for the films, Harm, both of To Prepare a Child and First Do No awarded the CINE Golden Eagle. Ms. Johnson is the recipient of the 1992 Lloyd Bentsen Award and the 1990 Humanitarian Award from Pediatric Nursing. She currently serves on the Board of Advisory Editors for the journal, Families, Systems, and Health..

Articles, Related Research, Links

  1. Briefing Paper on Family-Centered Health Care
  2. Institute for Family-Centered Care

 

Judith Katz-Leavy

"Over the past decade, we have learned that families can and do play a central role in the care and treatment of children who experience serious emotional disturbances. Through the principles and values promoted by the Child and Adolescent Service System Program (CASSP), mental health professionals are now working in partnership with families in the design, scope, and implementation of a broad-based system of care. Families have taken on critical roles - not only in the developing their own child's service plan, but also in system reform design, program evaluation, and peer support and advocacy for other families encountering similar problems. These new roles have emerged as a result of a major paradigm shift in the field resulting from the reevaluation and revalidation of the importance of families in a system of care."

Judith Katz-Leavy, Senior Policy Analyst, Office of Policy, Planning and Administration, federal Center for Mental Health Services. She is the co-founder of the Child and Adolescent Service System Program (CASSP), and has spent her career working to improve service delivery systems for children and adolescents with mental health needs and their families. In 1993 she served as Co-Chair of the Child Mental Health Sub-Group in the Administration's National Health Care Task Force.

Articles, Related Research, Links

  1. New Roles for Families in Building Systems of Care: A CASSP Perspective

David B. Kendall

Mr. Kendall is currently the Senior Analyst for Health Policy and Director of the Health Priorities Project at the Progressive Policy Institute. He is the author of several PPI reports as well as the chapter entitled "Modernizing Medicare and Medicaid: The First Step Toward Universal Health Care," in Building the Bridge: 10 Big Ideas to Transform America. Prior to joining PPI in 1994, Mr. Kendall served for seven years on the staff of Congressman Michael A. Andrews (D-TX) where he held several positions including Legislative Director and Senior Policy Director. He worked extensively with the Jackson Hole Group and Congressman Jim Cooper on the Managed Competition Act. In 1993, he served on the President's Task Force on National Health Care Reform. In 1986, Mr. Kendall was a legislative assistant to Congressman James R. Jones (D-OK), a former chairman of the Budget Committee. Prior to working on Capitol Hill, he managed fund raising for public interest organizations like Common Cause. Mr. Kendall attended the University of Chicago from 1977 to 1981 and studied public policy.

Articles, Related Research, Links

  1. Creating a Health Information Network: Stage Two of the Health Care Revolution
  2. Progressive Policy Institute
  3. Progressive Policy Institute's full articles on families and health

 

S. Robert Levine

"We envision a universally accessible system which can, through a variety of means, help direct individuals and families to the health information and resources they want and need to become full partners in promoting their health and achieving positive outcomes when ill. This system would link to a broad network of integrated family health resources through which all parties can share, in confidence, insight, expertise and knowledge, for the purpose of enhancing the health of individuals, families and communities, and improving the quality of our health care system."

Dr. Levine is Chairman of the Advisory Group of the Progressive Policy Institute's "Health Priorities Project (HPP)." HPP is an ongoing project focused on defining critical issues and articulating policies which respond to the complex challenges posed by our desire to create an Information Age Health Care System whose goal is universal access to high quality, affordable, market-based, health care.

Following completion of his undergraduate studies in Human Development and Nutrition at Cornell University, Dr. Levine attended Loyola-Stritch School of Medicine (Chicago, Ill.), where he graduated summa cum laude in 1979. He completed his Internal Medicine and Cardiology post-doctoral training at the Mount Sinai Medical Center, New York City (MSMC) where he later joined the full-time faculty as the founding Director of MSMC's Cardiac Health and Rehabilitation Program.

In 1990, Dr. Levine helped launch TVN Entertainment Corp., a "direct-to-home" satellite pay-per-view (PPV) service. TVN's recently debuted digital cable television service, DCTVTM, with allow medium and small-sized cable operators to immediately bring the latest in digital video, audio, and data services to subscribers without costly system upgrades. Dr. Levine is also a founder The Health Corporation, a start-up developer of intelligent health information management services which focus on health enhancement, disease prevention, and disease state management.

Dr. Levine serves on the Executive Committee and International Board of the Juvenile Diabetes Foundation and is Chairman of JDF's Government Relations Steering Committee. In this role, Dr. Levine leads JDF's volunteer advocacy efforts in support of enhanced federal funding of medical research. Dr. Levine currently serves on the NIH's National Institute of Diabetes, Digestive and Kidney Diseases Advisory Council.

Articles, Related Research, Links

  1. Assumptions and Guiding Principles
  2. Networked Family Health Resources: A Family Centered Care Concept
  3. Health Management Accounts (HMAs)
  4. A vision of a universally accessible health system
  5. Creating a Health Information Network: Stage Two of the Health Care Revolution
  6. Beyond the Managed Care Backlash: Medicine in the Information Age
  7. Progressive Policy Institute
  8. Progressive Policy Institute's full articles on families and health

David J. Lansky

"FACCT--The Foundation for Accountability--is committed to helping Americans make better health care decisions. FACCT believes that America's ability to create a health care system responsive to the needs of families depends on:

  • listening to families and incorporating their concerns and values into the design and delivery of health care
  • measuring the performance of health plans, hospitals and providers on health outcomes that affect the lives of families and improve family health
  • communicating the results of performance measurement to families to help them make more informed health care decisions""

David J. Lansky, Ph.D., is the president of FACCT - The Foundation for Accountability. FACCT is a not-for-profit organization dedicated to helping consumers make better health care decisions. FACCT's board of trustees is made up of consumer organizations, corporate health care purchasers and government purchasers representing 80 million Americans.

FACCT believes that America's ability to create a more responsive health care system depends on informed, empowered consumers who help shape the system, hold it accountable for quality and act as partners in improving their health. To achieve this goal, FACCT creates tools that help people understand and use quality information, develops consumer-focused quality measures, supports public education about health care quality, supports efforts to gather and provide quality information, and encourage health policy to empower and inform consumers.

Before joining FACCT, Lansky was regional director of clinical information for Oregon-based Providence Health System, a statewide integrated system that includes six hospitals, primary care groups, home health services, and both HMO and PPO insurance services. At Providence, Lansky led the Center for Outcomes Research and Education. which helped members, patients, doctors and managers measure and understand the quality of health care delivery. Lansky's team was responsible for outcomes research, measurement of consumer satisfaction, health risk and health status assessment, development of electronic member and patient records, and communicating with purchasers and the larger community about health care quality.

During 1993 and 1994, Lansky provided support to the Jackson Hole Group, with responsibility for national accountability measures under the "managed competition" model. He holds a doctor of philosophy degree from the University of California in Berkeley.

Articles, Related Research, Links

  1. FACCT - The Foundation for Accountability

Anne McGintis

"As an educator and a dedicated family advocate, I believe that in order for communities to prosper, as community dwellers, we must work collaboratively to achieve desired goals for our community at large. It is vital that we strengthen the family unit together. Community teams should create opportunities that will assist families of need to successfully achieve some of their lifelong goals."

Anne McGintis is coordinator of the Parents, School, and Community Involvement Program in Chattanooga, Tennessee.  McGintis is also the creator of the "Parent College" endeavor, a collaborative program that relies upon many resources...schools, community businesses, non-profit foundations, support agencies, hospitals, colleges and universities.

The Parent College is a place where parents and families come to learn how to better educate their children.  National studies indicate that when parents are involved in a child's school life, test scores improve and the desire to learn increases.

McGintis has been a teacher and guidance counselor for the past 28 years and has had numerous awards and honors for her work as an educator and community organizer.

Articles, Related Research, Links

  1. Ten Ways Chattanooga Invests in Children
  2. Steps, Stages, and Strategies for Designing Family Resource Centers
  3. Helping parents to be 'teachers'

Michael L. Millenson

"Families re than easy access to affordable care. They also need information on the outcome of care; information on the performance of their doctors, helah plans and hospitals; and a chance to be equal partners in making care decisions."

Michael L. Millenson is nationally recognized for his analysis of issues affecting the cost and quality of medical care. His book, Demanding Medical Excellence - Doctors and Accountability in the Information Age (University of Chicago Press), is the first examination of quality-of-care issues for the general public and has been widely praised in the general and medical press.

Research for the book was funded by an Investigator Award in Health Policy Research from the Robert Wood Johnson Foundation. Upon completion of that grant in 1996, Michael joined the Health Care and Group Benefits practice of William M. Mercer, Incorporated. Michael is also the author of Beyond the Managed Care Backlash, a paper issued by the Washington-based Progressive Policy Institute.

Millenson worked with the Jackson Hole Group during the creation of the Foundation for Accountability (FACCT). Before that, as a reporter for the Chicago Tribune, he was nominated for a Pulitzer Prize in 1987, 1991 and 1993. He was one of the first journalists to cover socioeconomic issues  involving health care for the general public, and his awards include an Alicia Patterson Foundation journalism fellowship and the University of Missouri Business Journalism Award.

A sought after speaker, Millenson has appeared before numerous national organizations and has testified on health care quality issues before the U.S. Congress. He is a visiting scholar at Northwestern University's Institute for Health Services Research and Policy Studies and a member of the board of the Association for Health Services Research.

Articles, Related Research, Links

Irwin Redlener, M.D., F.A.A.P.

"While great strides have been made in expanding access to health care for children, many challenges remain. Millions of children continue to face barriers which interfere with their ability to get the care they need, when they need it. My vision is a medical home for every child and a true focus on the health, well being and empowerment of families as the key to ensuring the best possible future for our nation."

Dr. Redlener is President and co-founder of The Children's Health Fund, a philanthropic initiative created to develop and support health care programs for medically underserved children. At Montefiore Medical Center he is vice president for the Children's Medical Center, Director of the Child Health Network and Director of Community Pediatrics. He is also Professor of Pediatrics at the Albert Einstein College of Medicine and Lecturer in Pediatrics at Harvard Medical School.

The nationally acclaimed New York Children's Health Project, the country's largest health care program for homeless children, was developed in 1987 by Dr. Redlener. It is the model for a number of innovative health care projects in The Children's Health Fund's program network for disadvantaged child populations in urban and rural communities across the country.

In his role as pediatrician-child advocate, Dr. Redlener has published, spoken and testified widely on the subject of health care for homeless and indigent children, child abuse and neglect and national health policy.

Dr. Redlener currently serves as co-chair of the Healthy Start Advisory Group for America's Promise: The Alliance for Youth. He recently completed a two year term as Chairman of the National Advisory Council on the National Health Service Corps. In 1993 Dr. Redlener was Vice Chairman of the Health Professional Review Group for the White House Task Force on National Health Care Reform.

Dr. Redlener has served as a physician special consultant to the White House, as well as Expert Consultant to Assistant Secretary for Health, Department of Health and Human Services. Dr. Redlener currently leads Kids First, Kids Now!, a national initiative proposing comprehensive health reform for children.

Articles, Related Research, Links

  1. System-Based Mobile Primary Pediatric Care for Homeless Children: The Anatomy of a Working Program.
  2. The Children's Health Fund: Caring for Kids Since 1987.
  3. The Children's Health Fund homepage

Helen M. Sandalls, J.D.

"Despite the enormous sophistication of medicine in this country, managed care makes this not a particularly good time to be either a patient or a physician.

The reasons are many and complex.

One reason is the disappearance of the patient protections deriving from the traditional physician-patient relationship.

The first protection deriving from the physician-patient relationship was the physician's ethical obligation to put the patient's medical welfare ahead of the physician's financial interest.

Because the success of managed care today depends on patients' not receiving medical care, patients need more than ever the protections deriving from the traditional physician-patient relationship."

Helen Sandalls is a lawyer working to develop patient protections in the managed care environment. Her clients are exclusively hospital medical staffs, because they were created solely to protect patients and are legally responsible for evaluating and reporting on the quality of patient care in hospitals. She focuses physicians on their individual and professional responsibilities to patients and to other practitioners in managed care settings and hospitals that often thwart good patient care and helps them develop formal procedures to protect patient welfare and to assure high quality medical care. Ms. Sandalls is currently developing mechanisms to require health plans to create independent medical staffs and working to establish an internet web site with health plan profiles to aid the public in making informed choices of health plans. She helps physicians advise state legislators and enforcement agencies on the impacts of state and federal policies on patient welfare and medical practice.

Before becoming a lawyer, Ms. Sandalls taught foreign language and literature in public high school for several years and subsequently worked on environmental issues, establishing a national network for toxic substances exposure victims and activists. She graduated from Wellesley College (BA), Harvard University (MA) and Arizona State University College of Law (JD). She is an avid hiker and lives with her husband and son in Washington, DC.

Articles, Related Research, Links

  1. A Message for Family Re-Union 7. Four tasks that could help re-establish patient-centered health care.

Lawrence N. Shulman, M.D.

"Patients and their families must be our partners in the development and management of health care delivery systems as we move into the new century. In the old paradigm, health care systems were created around the desires and needs of the physicians. Nurses served in roles to aid and facilitate physician activities. Patients came at the convenience of the physician, to an environment supportive of the physician.

The medical profession must accept that we are here to serve the patients and their families. We must design our care delivery systems around the needs of the patients and their families. In order to accomplish this patients and families must become active participants in the development and management process, and health care administrators must accept them as true partners, not just of symbolic importance. Patients and families can rise to this challenge with responsibility and insight, and add real value to the process. Health care delivery will be better for this, and not necessarily more costly.

In this process we have found that an integrated approach to health care delivery can improve outcomes. Using a co-leadership team of a physician and nurse can provide more effective and balanced direction, with greater insight and perspective into the process. All services (nutrition, social services, chaplaincy, pharmacy, quality improvement, etc) are part of the management team. In addition patient and family representatives have also joined the management team as real partners, participating in all levels of decision making concerning the day-to-day operations of the health care delivery system, as well as the planning for future development.

This entire process has greatly broadened our understanding of the needs and desires of the patients and their families, and has improved our ability to successfully meet those needs, while providing both state-of-the-art technical care as well as compassionate care."

Dr. Shulman is Vice Chair for Clinical Services for the Department of Adult Oncology at the Dana-Farber Cancer Institute and Brigham and Women's Hospital. He is an Associate Professor of Clinical Medicine at Harvard Medical School. Previous to this position he was the Clinical Director of the Hematology-Oncology Division at the Brigham and Women's Hospital. He is the co-founder and co-leader of the Patient and Family Working Group and Council at the Dana-Farber Cancer Institute and the Brigham and Women's Hospital. His areas of clinical expertise include the treatment of breast cancer, Hodgkin's and non-Hodgkin's lymphomas. In addition he is involved in the development of new anti-cancer agents including chemotherapeutic agents, viral therapies and chemotherapy and radiation therapy sensitizers. He is the former chairman of the Public Issues Committee of the American Society of Clinical Oncology, and is presently on the Cancer Education Committee of the same organization. He is the former President of the Leukemia Society of America, Massachusetts Chapter. He is a graduate of Harvard Medical School.

Articles, Related Research, Links

  1. Dana-Farber Cancer Institute
  2. Brigham and Women's Hospital
  3. Harvard Medical School

 

Naomi Tannen

"Families First opened its doors in November, 1992. It is a constantly evolving program that attempts to be true to the values on which the project was developed. We now have a Youth Advisory Committee as well as parent input on all program development. We believe that parents know their children best, know what interventions they need, should choose their workers, and be totally involved in every decision affecting their family. Families' natural support systems are considered to be primary sources of support and are included in plans, along with professional assistance. Families First is now a warm and friendly center that has among their services: an 800 number for families to call, a drop in policy, support groups, informational meetings, youth activities, family advocates that do home visits, and a resource library.

Although what we are doing seems like basic common sense, it is actually a radical approach. Radical in that it challenges the way in which professionals have traditionally viewed families who have a child with emotional disturbance. Systems change takes a very long time, and requires persistence, constant strategizing, and a total commitment to a vision.

One of our parents said that the problem with most professionals is that they have all of the answers and none of the questions. Families First is constantly learning to ask the questions and to listen to the answers."

A highly regarded human services consultant who designed and directed an intensive therapeutic home-based program in Vermont which has received national acclaim. Her program was used as the basis for the expansion of the family preservation program on the state of Vermont. The recipient of numerous awards, she has offered training and technical assistance in the US and Canada on developing a system of care for families and children. After a year in Israel, she has settled in Burlington. She is the sister of Deborah Tannen.

Articles, Related Research, Links

  1. Families at the Center of Systems Development
  2. The Healing Potential of Responsiveness
  3. Some Issues of Rurality and Their Effects on Families with A Child with SED
  4. Families First in Essex County