By Eileen Forlenza
Director, Family Leadership Initiative
AMCHP Board Member
Title V Colorado
As we pulled off the highway, we made our way down a picturesque country road that welcomed us with trees with outstretched arms. It was almost as if we were getting a preemptive hug, a sense that perhaps we should prepare ourselves for a dose of emotion. I was going on a site visit to a long-term residential group home for adults with autism or other profound intellectual deficits and I was going in with my eyes wide open. I was far from my Colorado home, visiting an east coast state known for its history of excellence and dedication to children with special health care needs. My daughter Holly turned 23 this week wedging yet another year between childhood and adulthood. One more year in her unique life living with complex health care needs. As I prepared for this site visit, I convinced myself that it is logical that excellence in services for children will equate to excellence for adults – that service systems for children have mentored their counterparts in the adult system – exchanging best practices and lessons learned. However, logic does not always prevail in the complex world of children and youth with special health care needs (CYSHCN). There is no window more clearly from which to view the truth of the life course theory (LCT) than to examine the quality of life of adults with autism and other developmental disabilities.
LCT is particularly poignant for CYSHCN. Protective factors embedded in federal law on behalf of CYSHCN are demonstrated by Title V programs and the entitlement-based service delivery in newborn screening, early intervention services, special education and health services for children and youth living in poverty. The National Performance Measures (NPMs) asserted by the Maternal and Child Health Bureau are concrete protective factors that should set the rhythm by which a state designs its services on behalf of CYSHCN. While it is clear that Title V cannot do it alone, the NPMs provide the framework by which partnerships and collaborations can build effective systems. Services offered by Title V agencies clearly offset the myriad of risk factors experienced by CYSHCN and their families. LCT states “today’s experiences and exposures influence tomorrow’s health,” which is another way of saying the trajectory of an adult with special health care needs is highly dependent on their childhood and adolescence.
With the integration of drinking fountains, schools and busses, our country also proclaimed that children should not be warehoused in state-run institutions simply due to complex health care needs. For this, we should rejoice! As individuals with disabilities were no longer cared for in large aggregate settings, they were integrated into their communities. The problem is we forgot to tell the community. Our schools, synagogues, churches, recreation centers and neighborhoods were simply not prepared. However, the focus of the bottom of the maternal and child health pyramid addresses this phenomenon. Building sustainable systems of care, anchored by population-based initiatives, ensures that CYSHCN will have positive outcomes through the life course.
Leaving the long-term residential home, neatly tucked away in the rural countryside, I was choked with emotion. As I looked into the eyes of the nonverbal residents, I knew I was seeing the reflection of Holly. At 23 years old, she was raised in the era of an enlightened country, supported by Title V programs, the Individuals with Disabilities Education Act (IDEA) and integrated communities. And yet, this is what Holly’s adult life may look life. Isolated, tucked away, predictable and living in an environment where being nonverbal is the norm. I ponder what her choices will be and how the system will hold itself accountable during cycles of budget restraints and political warfare.
And so, to my fellow colleagues who work tirelessly to improve the health of women and children, I implore you to embrace LCT when considering the journey of CYSHCN. Let us proclaim that as a community of learners we were prepared, innovative and wise.
By Jessica Foster MD, MPH
CYSHCN Director, Medical Director, Bureau for Children with Medical Handicaps and Early Intervention Services, Ohio Department of Health
Title V CYSHCN programs support children facing a variety of challenges as they grow into healthy, active, independent and productive adults. Evidence suggests disparity exists in health care quality, home environment, and neighborhood and school environments for CYSHCN compared with non-CYSHCN.1 Life Course emphasizes impact of social determinants of health across the life span in attaining health equity for our children. Access to social and economic opportunities and a child’s experience growing up in their home, school and community significantly impact long-term health, development and well-being. Life course encourages programs to pursue unique partnerships and novel approaches to address these complex needs.
Ohio recently merged our Children with Medical Handicaps program with Help Me Grow Home Visiting and Part C Early Intervention strengthening connections between a medical model, home-based/family-centered early intervention and early childhood system leading to a more seamless system for families. Additionally, a network of Public Health Nurses and hospital-based care coordinators work with our families to provide support and linkage in local communities prenatally through school age and the critical transition to adulthood. We are working on medical transition in partnership with our genetics program, medical and university partners to improve care through the life span for our children who may now live into elderly years. Life Course challenges us to reach beyond our partners in medical care and to strengthen working relationships with programs addressing social, economic and environmental factors. In Ohio, we are building on linkages in local communities, which will ultimately drive the changes needed to impact social determinants of health and move toward health equity for CYSHCN.
1 Children with Special Health Care Needs in Context: A Portrait of States and the Nation 2007. U.S. Department of Health and Human Services Health Resources and Services Administration. September 2011.
By Holly Williams, RN, MS
Director, Bureau of Children with Special Health Care Needs, Utah Department of Health
The life course perspective will bring new opportunities to collaborate with our primary care and prevention partners in Utah and around the country, especially as science and medical advances allow children with disabilities to live longer. The life course perspective is an impetus to look beyond the service itself. Here is one example of what Utah is doing: The Children with Special Health Care Needs (CSHCN) Neonatal Follow-up Program, that sees young children who were born at 1250 grams or less, is partnering with the University of Utah (U of U) Department of Obstetrics to assist mothers in understanding their potential risk for a subsequent preterm birth. We have found that few mothers of premature babies are aware they are at increased risk for another preterm birth. U of U clinicians talk with mothers about risks and available treatments that may reduce that risk. The U of U will study the effects of this intervention on the outcomes of subsequent births in these mothers.
CSHCN promotes early identification of disabilities; healthy development, including relationships, of healthy behaviors; transition to adulthood, including self-reliance and self-advocacy. This perspective will enable us to ensure that children, youth and young adults with special health care needs can live to their fullest potential. Looking back at family history, as well as to the future, is helpful in understanding the possibilities of disabilities being passed from generation to generation. Children with disabilities benefit from high-quality and timely interventions to prevent secondary conditions. Children, youth and young adults have a need for increased health care access, health promotion activities, and overall life stress reduction throughout the life course, targeted to their particular disability.