MCH TIMELINE

Oral Histories

BIOGRAPHY

MCH HISTORY

MCH TRAINING PROGRAM

MENTORING

GLOBAL HEALTH

FUTURE OF MATERNAL AND CHILD HEALTH

The MCH Block Grant: Past, Present and Future

At the time of these interviews in 2007, Dr. van Dyck was Associate Administrator for the Health Resources and Services Administration’s (HRSA) Maternal and Child Health Bureau (MCHB), Dr. Guyer was Zanvyl Kreiger Professor of Children's Health at Johns Hopkins University School of Public Health, and Dr. Hollinshead was Medical Director - Family Health at the Rhode Island Department of Health. Dr. Judson Force was also invited to participate in the interview but fell ill the day of the interview. He shares his written reflections.

VIDEO INTERVIEWS

Title V: The Evolution of Family Partnership

In 1979, the Maternal and Child Health Bureau (MCHB) determined, in response to feedback from families and providers, that the Title V Crippled Children's Programs needed to correct a missing piece of the program - meaningful involvement and support of families. MCHB’s Habilitative Services Branch (now the Division of Services for Children with Special Health Needs), under the leadership of Merle G. McPherson, MD, and with input from families with children with special health care needs and other stakeholders, made a conscious effort to identify and address family issues and service needs.

The videos below are meant to share the history of the "revolutionary" idea to include meaningful partnership with families in program and policy development, as described by Dr. McPherson and some of the early family leaders who helped shape the new direction of Title V's Children with Special Health Needs Programs. The program name change highlights how MCHB partnered with and listened to families served. Discretionary grant programs and Title V MCH Block Grant Program efforts began to include family/ professional collaboration within the context of family-centered, culturally-competent care. This effort promoted collaborative relationships, not only to improve the quality of life and health of an individual child and family, but also to improve community-based systems of care through policy formulation and program implementation.

VIDEO INTERVIEWS

Interviewees

Merle McPherson, MD, MPH

Dr. Merle McPherson received her medical degree from the University of Saskatchewan and an MPH from Johns Hopkins University. She is a Fellow of the American Academy of Preventive Medicine and an Honorary Fellow of the American Academy of Pediatrics. A national and international leader in the development of comprehensive, community-based service systems for children with special health care needs, Dr. McPherson retired from a long and distinguished federal career as Director of MCHB’s Division of Services for Children with Special Health Needs (DSCSHN), a position she held from 1987 to 2007. Additionally, Dr. McPherson has held leadership positions in developmental disabilities and children’s health with the Hawaii and Maryland Departments of Health. While serving as the director of DSCSHN, Dr. McPherson was awarded the Presidential Rank of Distinguished Executive, the highest award a federal senior executive can receive. Dr. McPherson was recognized for her pioneering work in establishing the medical home, a collaboration among primary care providers, specialists, and children and youth with special health care needs and their families to ensure access to culturally-competent, family-centered and comprehensive health care. Medical homes have dramatically improved systems of care for children and youth with chronic illness and disabilities. Dr. McPherson also led the effort to develop a comprehensive and nationally accepted definition of children with special health care needs. Under her command, her office embarked on a 10-year action plan on improving services for children and youth with special health care needs to help them live happy and productive lives.

Julie Beckett

Julie Beckett has been a tireless advocate for what are now commonly known across the country as Medicaid Home and Community-Based Services (HCBS) Waivers. Julie’s work with HCBS Waivers began when she wanted to bring her daughter, Katie, home from the hospital. Medical costs related to Katie’s care had exceeded her family’s health insurance policy. Medicaid began paying for hospital services, but would not permit Katie to leave the hospital and continue to receive care without filing a complicated Medicaid document called an exception to policy. Congressman Tauke turned to the White House for help after the Department of Health and Human Services (DHHS) denied the Becketts' request for an exception to policy. As a result, President Reagan and Vice President Bush agreed with Katie’s physicians and her family that it made sense for Katie to come home and ordered DHHS to find a way to resolve this issue. The Katie Beckett Medicaid waiver allows families to care for their children in their homes and communities rather than in hospitals or institutions. Julie Beckett is one of three founding members (Polly Arango, Julie Beckett, and Josie Woll) of Family Voices, a national grassroots network of families and friends speaking on behalf of children with special health care needs. At the time of this interview in 2007, Julie served as Director of National Policy, Family Voices, Inc.

Betsy Anderson

Betsy Anderson is the parent of three adult children. Her oldest son was born with spina bifida. At the time of the interview in 2007, she worked for Family Voices in Boston as Director of the Family Voices IMPACT Project, funded by MCHB’s Division of Child, Adolescent and Family Health at the Maternal and Child Health Bureau. She has long been interested in family-professional collaboration and has served on numerous national, state, and local committees and task forces, such as the NIH Human Genome Project, Ethical, Legal and Social Issues (ELSI) Working Group and the Congressional Task Force on Technology Dependent Children. Betsy has written materials and articles appearing in both family literature and professional journals and has been active regionally and nationally in areas relating to: Bright Futures, health care reform, genetics programs, Title V and employment of families in Title V, ethics, special education and families of children with special health needs. Awards include: Directors Award, Maternal and Child Health Bureau, HRSA, HHS; Senator Lloyd Bentsen Award for Family Centered Care; Allen Crocker Award, New England Regional Genetics Group; Harvard Chair for Parent-Professional Collaboration, Children’s Hospital, Boston; and Pediatric Research Associate, Harvard Medical School.

Patricia Thomas

Patricia (Trish) Thomas is from the Pueblo of Laguna Indian Reservation in New Mexico. At the time of this interview in 2007, she lived on the reservation but had previously lived on the East and West coasts, in Central America, and in Europe. She has educated and advocated for many years on behalf of her children as well as other children who have special health care needs at the local, regional, national and international level with policy makers, the media, and health care and educational professionals. She has worked to bring a better understanding of the needs of families from diverse cultures to the forefront and a better understanding of the issues confronting rural and frontier families who have children and youth with special health care needs. At the time of this interview, Trish was the Partnership/Technical Assistance Coordinator for the Family Voices' National Center for Parent Professional Partnerships in Albuquerque, NM. She was also a training consultant to the National Center for Cultural Competency at Georgetown University Child Development Center in Washington, DC; served as Cultural Competency Consultant to the National Center on Youth Transition (Healthy and Ready to Work) Bangor, ME; and has had sat served on many boards, committees and task forces, such as the HRSA/MCHB (Health Resources and Services Administration/Maternal and Child Health Bureau) Federal Communication and Information Work Group; the Association of Maternal and Child Health Programs (AMCHP) conference planning committee Washington, DC; the National Indian Health Board, Tribal Summit for Youth Transition, Washington, DC; and the Mountain States Regional Genetics Consumer/Education, Denver, CO.

Barbara Popper

Barbara Popper, a former high school teacher, parent of four children and six grandsons was involved in parent advocacy since her second child was hospitalized as an infant at a time of restricted hospital visitation ,policies. She founded a volunteer parent organization, Children in Hospitals, Inc., to encourage liberalized family contact policies. She was the former director of the national Family Voices Family Matters Project, a research project with Tufts University School of Medicine focused on health and wellness for children with special needs, and the Federation for Children with Special Needs APPLE project assisting parents of children with special needs in developing their leadership skills in the education system. She is was a board certified lactation consultant with a particular interest in families whose babies have special health care needs. Barbara passed away in 2013.