Family Voices Provides Testimony at Hearing on Advancing Care For Exceptional Kids Act (ACE)

Photo of Maria Isabel FrangenbergMaria Isabel Frangenberg, representing Family Voices, addressed the Subcommittee on Health of the House Energy and Commerce Committee in its hearing to get comments from stakeholders about the draft ACE Kids Act (H.R.546). This legislation, sponsored by Representative Joe Barton (TX) and Kathy Castor (FL), and currently cosponsored by 213 House members, gives state Medicaid programs the option to establish health homes for children with complex medical conditions.  It would provide two years of enhanced payments to states to help with implementation. The draft also requires increased quality reporting, transparency regarding payment across state lines, and guidance from the Centers for Medicare and Medicaid Services to states on best practices for payments across state lines.

Maria recounted the critical value of Medicaid to families of children/youth with special health care needs (CYSHCN). Children/youth with complex medical conditions, a subpopulation of CYSHCN, require highly specialized care, care from multiple providers, and often care from providers across state lines. Medicaid does not adequately provide these services and the ACE Kids legislation addresses these barriers. While Family Voices strongly supports the goals outlined in the ACE Kids Act, Family Voices recommends the following to enhance the positive impact of the legislation:

  1. Establishment of federal qualification standards for health home providers
  2. Coordination of health homes with Family-to-Family Health Information Centers
  3. Engagement of families as partners in the development and implementation of health home policies and procedures; development of quality measures; and development of the definition of ‘child with medically complex condition’
  4. Education of families, in a linguistically and culturally competent manner, about health home services
  5. Requirement that states adopt best practices for providing access to out-of-state providers

Download the Family Voices Witness Statement here.  For the bill, a webcast of the hearing, and the testimony of other witnesses, click here

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