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 Families

Life Course Theory and its Impact on Children and Youth with Special Health Care Needs

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 doesn’t 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, assures 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 non-verbal 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 non-verbal 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.