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 Opportunities and Challenges in Building Systems for CYSHCN

By Judy Palfrey
Co-Principal Investigator, National Center for Ease of Use of Community Based Services (July 2010-August 2011) 

Families of children with special health care needs (CYSHCN) turn to Maternal and Child Health programs for assistance with a wide variety of concerns. Like other children, CYSHCN require health, education and recreation services, but often their needs are more complex than those of other children. For CYSHCN, services are often not “easy to use” because of stringent eligibility criteria, distant access, limited time availability or lack of training of personnel about disability care. Title V agencies are charged with finding ways to organize health care, dental care, early intervention, therapies, mental health services, vocational and recreational interventions so that parents can readily take advantage of them. Instead of a maze, parents want a map. They have reasonable expectations that health, dental, education, nutrition, vocation and therapeutic professionals are working together to make a seamless whole of the various community-based offerings.  

At the National Center for Ease of Use of Community-Based Services, our mission is “to advance policy and practice solutions that improve community-based services.” In taking a look at the current state of affairs for CYSHCN, we find that uninsured children, children from single family homes and children whose parents do not speak English as their first language report that services are not organized in a way that makes them easy to use. One major protective factor, though, is the presence of a Medical Home. CYSHCN without a Medical Home are six times more likely not to have services that are “easy to use” than children with a Medical Home. 

As MCH professionals concerned with improving the ease of use of community-based services, a focus on the Medical Home allows emphasis on four important concepts: universality, access, value and affordability. MCH programs can and should be monitoring the child and adolescent population in the state to assure that all children (and especially all children with disabilities) actually have a Medical Home. The most recent National Survey of CYSHCN shows that only 47 percent of CYSHCN have a Medical Home. The universality principle will be achieved when 100 percent of CYSHCN have a Medical Home. Accessibility to services is a function of both the physical accessibility and the availability of resources (including trained personnel). MCH professionals will improve the ease of use of services greatly by interventions such as the co-location of services, cross-training of providers and specific disability awareness training of community based professionals. The value of community-based services is enhanced whenever families find that the quality of their daily lives and that of their children is good. Not having to spend inordinate energy and time on overly bureaucratic procedures lessens stress and improves the quality of families’ lives. Finally, within the Medical Home, services are organized to be affordable, with reduction of unnecessary tests, and interventions and the provision of targeted, outcome-oriented, high quality services.  

At the National Center for Ease of Use of Community-Based Services, we are eager to learn more about how families and providers perceive community-based services. We are interested in learning both the challenges and the best practices that providers and families are aware of. To that end we have created a survey that will help us find out what is working and what is not. The survey is simple and quick. We would love to have as many Title V agencies, families and providers fill out the survey as possible. The survey will help us all as we work to ensure that families benefit from the best that is out there…the Medical Home.