How Has Title V Involvement with Families Evolved?

A Discussion with Betsy Anderson 

By Treeby BrownTreeby Brown
Senior Program Manager, Children with Special Health Care Needs, AMCHP 

AMCHP recently talked to Betsy Anderson, Family Voices IMPACT Project Director and one of the founders of the Federation for Children with Special Needs (FCSN) about the evolution of family involvement with Title V programs.  

In the early days, Title V programs (including CYSHCN) were closely aligned with hospitals and clinics, and medical models were the norm. Families were not part of decision-making, there was little information for families, and there was no expectation that families would have roles impacting policies, programs or systems of care. (Moreover, even when Title V provided services, at a children’s hospital, for example, families Betsy Andersonhad little or no knowledge that “Title V” was paying for the care.)  

By the late1970s, there was growing recognition at the federal level that services provided by Title V CYSHCN programs were not well matched to children and families’ needs. In the mid 1970’s legislation establishing Individuals with Disabilities Education Act (IDEA) provided a much stronger role for parents in the special education sector, through parent roles in the Individual Education Plan (IEP) process as well as advisory roles at state and national levels. Leadership in the Maternal and Child Health Bureau, began to feel that this strong role for families should also occur on the “health” side of children’s care as well and funded the Federation in 1985 – the first family organization to receive such funding. Among the early activities was a survey of how health departments were involving families. At that time only some states included families on advisory committees, which were largely composed of professionals and focused on single conditions.  

Further language in the Omnibus Budget Reconciliation Act of 1989 focusing on “family-centered care” strengthened the role of families and also supported the concept of a family role that was not disability-specific, but rather “cross disability” — recognizing the many commonalities that parents of children and youth with special health care needs share. By 1992, 98 percent of states involved families on advisory committees. Additionally, a surprising finding was that a number of states were employing families as staff or consultants. With the creation of Family Voices in 1992, the family movement in health took a giant step — establishing a national network of families across the country, prepared to speak up to achieve family-centered care. Increasingly families began attending the AMCHP Annual Conference and in 1995 the Family Scholarship program was begun to support family participation. AMCHP’s Family and Youth Leadership Committee has worked tirelessly to define, design and support the role of families as key partners. Last but not at all least, families have served on the AMCHP Board since 2006.  

Yearly states collect data on family involvement though the Form 13 requirement for the Title V MCH Services Block Grant application. At the same time, families have better access to data as well through the Title V Information System (TVIS) and the National Survey of Children with Special Health Care Needs.  

While families have roles and relationships with MCH programs, it remains a goal to increase and enhance those relationships. While family involvement in CYSHCN programs may be accepted as a given, the MCH program has not had such a dramatic shift — perhaps because the MCH focus on prevention and health promotion may be seen as less urgent for many over-extended families.  

Tremendous progress has been made! Family roles will likely continue to evolve — like Title V itself — to meet the new issues and challenges of our nation’s families.