Advocate


ALERT:  Tell your Members of Congress: “Do no harm to children.  Vote against any repeal of the Affordable Care Act before enactment of a replacement plan that maintains or improves the coverage and protections of the ACA.” Call or send an email to your Senators and Representative.

 

Through its policy team in Washington, DC and network of families throughout the country, Family Voices advocates for federal legislative and regulatory policies that will benefit children and youth with special health care needs (CYSHCN) and their families.  One of Family Voices' main policy goals is the continuation of federal funding for Family-to-Family Health Information Centers (F2Fs), information and referral centers that help families of children and youth with special health care needs to navigate the complex health system.  (Please see below.)  Other issues addressed by Family Voices include implementation of the Affordable Care Act, Medicaid, the Children's Health Insurance Program (CHIP), the Maternal and Child Health Block Grant, TRICARE (for military families), and Supplemental Security Income. Family Voices is also working to ensure that the nation is prepared to combat the Zika virus.

 

Family Voices Policy Positions:

Affordable Care Act.  Children and youth with special health care needs and their families have benefited greatly from the Affordable Care Act, particularly its ban on pre-existing condition exclusions, ban on annual and lifetime coverage limits, Medicaid expansion, and provisions allowing young adults to stay on their parents’ health insurance plans, and former foster children to get Medicaid, until age 26.  The Urban Institute estimates that over four million children would lose health insurance by 2019 if significant parts of the ACA are repealed. Family Voices opposes any bill to repeal the Affordable Care Act (even with a delayed effective date) before enactment of a replacement that maintains or improves the health insurance coverage and access to health care now provided by the ACA.

Medicaid. Many children and youth with special health care needs rely on Medicaid to cover their expensive medical treatment, medications, equipment, therapies, and other services and supplies. Some Members of Congress have proposed changing Medicaid’s federal funding mechanism into a block grant or capped per capita payment. Under either system, states will receive less federal funding than they would under current law, which will force them to make up the funding shortage with their own funds or, more likely, cut Medicaid benefits, reimbursement to providers, and/or eligibility for the program, thus hurting CYSHCN and their families. Family Voices opposes turning the Medicaid program into a block grant program or imposing per capita caps on federal matching payments to states. 
 
CHIP funding.  The Children’s Health Insurance Program (CHIP) provides federal matching payments to states to provide health insurance coverage for children, including CYSHCN, whose family income is limited but too high to qualify for Medicaid.  The program is authorized through FY 2019, but funded only through FY 2017.  As recently recommended by the Medicaid and CHIP Payment and Access Commission (MACPAC), Family Voices recommends that Congress extend CHIP funding for another five years (through FY 2022), along with the “maintenance-of-effort” provision (which keeps states from restricting eligibility and enrollment policies) and the 23-percentage-point increase in matching payment to states.

Family-to-Family Health Information Centers. Family-to-Family Health Information Centers (F2Fs) are statewide referral and information centers that help families of children and youth with special health care needs to navigate the complex health system in order to obtain and pay for the services their children need.  For example, F2Fs help families apply for Medicaid for their children, appeal insurance company decisions, and obtain early intervention services.  They also help families learn to partner with their children’s health care providers to improve health care cost-effectiveness and outcomes.  There is one F2F in each state and the District of Columbia, each of which receives a federal grant of about $95,000 per year. The F2F grant program is directly funded at $5 million annually through FY 2017. Family Voices supports legislation to extend the authorization and funding of F2Fs beyond FY 2017, to increase funding to grantees, and (as recently recommended by the bipartisan, bicameral Congressional Task Force on Economic Growth in Puerto Rico) to allow F2F grants to be awarded in U.S. territories.