Paid Family Caregiving for Children with Medical Complexity and Disabilities
Pediatric home health care is in crisis. Children with medical complexity require a substantial amount of medical care and activities-of-daily-living support to live at home. However, due to a shrinking pool of available home health care workers and narrow state eligibility requirements for services, most of their care is increasingly delivered by families without pay. In response, the option to pay family caregivers for their children’s medical labor is gaining national traction. This webinar provided a brief overview of laws that govern care for this population and specific models of paid family caregiving, and how they have been recently expanded in several states. Speakers explored a policy solution to pay families to provide home health care to their children with medical complexity and disabilities.
Cara Coleman, JD, MPH
Cara Coleman works for Family Voices National and is the author of “I am Justice, Hear Me Roar” about her daughter, Justice, with medical complexity and disabilities. She is Associate Editor for Family Partnerships, Executive Editorial Board of Pediatrics. In the past, Cara has worked as an adult health specialist, a case manager for homeless pregnant women, a counselor in a shelter for battered women, a law clerk for a judge, an immigration subject matter consultant, and an attorney serving low-income immigrants.
Carolyn Foster, MD, MS
Dr. Carolyn Foster is an Assistant Professor of Pediatrics at Northwestern University Feinberg School of Medicine and an attending physician at Ann & Robert H. Lurie Children’s Hospital of Chicago in primary and complex care. As a primary investigator of the Foster Health Lab, she holds both NIH and foundation funding to improve home and community-based services for children with medical complexity and their families, with research that spans intervention development, factors affecting patient and family wellbeing, and how state-level policies impact care provision. The Foster Health Lab’s mission is to improve the health of children with medical complexity, while reducing health-care related stress for their families, through family-partnered research and innovative clinical programming.
For 14 years Nannette Salasek has worked at Raising Special Kids as the Health Care Systems Administrator, providing families support, and training medical professionals on the principles of Family Centered Care and how to best care for families that have children with special health care needs. In addition to her work at Raising Special Kids, Nannette is a licensed Social Worker and serves on the Family Advisory Council at Phoenix Children’s Hospital.
Nannette and her husband have 6 beautiful children. Their lives were changed forever when their third child was born with Spina Bifida. Annie, now 19 years old, is a happy and independent young lady who bravely takes on the many challenges of living with Spina Bifida. Nannette is passionate about providing support to families and letting them know they are not alone in the journey of advocacy for their children with special needs.
Born and raised in St. Louis, Missouri, Bill Sczepanski has over a decade of legislative experience in the home health space and has worked in the home care industry for nearly twenty years. Currently residing in Phoenix, Arizona, Bill is the Vice President of Government Relations with Team Select Home Care. In his current role, Bill works closely with the President/CEO of Team Select Home Care, parents, providers, and legislators to create change for medically fragile families deserving quality care at home. Bill is well-versed in Medicare, Medicaid, Accreditation Commission for Health Care (ACHC), Health Insurance Portability and Accountability Act (HIPAA), Community Health Accreditation Partner (CHAP), Joint Commission on Accreditation of Healthcare Organizations (JCAHO), and Occupational Health and Safety Administration (OSHA) regulations. He is proud to be a resource for others around him.