Member to Member

The Patient Protection and Affordable Care Act includes provisions that will benefit children and youth with special health care needs (CYSHCN) and their families, including expanded access to health insurance coverage and new investments in medical home models.  

As these and other provisions are implemented, what new and/or ongoing roles do you see for Title V programs in building systems of care for children and youth with special health care needs and their families?  

James Bryant, MD
Chief, Bureau for Children with Medical Handicaps
Ohio Department of Health 

Title V CYSHCN programs will have the role of continuing to partner with families to assure that all families with CYSHCN are informed about the new provisions and opportunities, and then working with the other state agencies such as Medicaid and Insurance to assure the systems of care are easy for families to navigate. This will require a close collaborative effort with all family organizations, especially the Family to Family Information Centers and Family Voices. Hopefully as more children gain access to insurance coverage, Title V programs can concentrate more on their systems building mission and providing service coordination for the children and their families, as well as concentrate more effort on the transition from the pediatric/young adult medical care system to the adult medical care systems. This is both a great opportunity and a great challenge which Title V systems are ready to address. 

Maria Nardella, MA, RD, CD
Manager, Children with Special Health Care Needs Program
Washington State Department of Health

As the Patient Protection and Affordable Care Act is implemented, I see an ongoing role for the Title V CYSHCN program to maintain communication channels with diverse families across the state to assure their awareness of expanded access and coverage for services for their CYSHCN. Providers who serve these children and families also need to be kept abreast of new provisions of the act.  Access to providers willing to accept expanded insurance coverage and willing to serve CYSHCN must be assured.  The program has a role in assuring that new medical home models include pediatrics in general, and also include CYSHCN.  Lastly, there’s a role to document gaps and implementation barriers that may continue to exist despite the well-intended health care reform.