reduce the number of Children and Youth with Special Health Care Needs (CYSHCN) without health
insurance, close benefit gaps, pay for additional services, and build the capacity of the system of care.
through interviews with CYSHCN Program Directors and Family to Family organization leaders. In 2019
and 2020, CYSHCN Directors and family organization leaders from all 50 states and Puerto Rico were
invited to participate in interviews with Catalyst Center staff, and representatives from 28 CYSHCN
programs and 25 Family to Family organizations responded. Interview transcripts were approved by the
interviewees, then reviewed to identify strategies, which have been summarized here. For states unable
to participate in interviews, Catalyst Center staff conducted keyword searches of the 2019/2021 Title V
Block Grant applications to identify strategies. Strategies have been vetted with state Title V CYSHCN
program representatives for accuracy.
Alternative Payment Models
Alternative payment models (APMs) are payment approaches that aim to incentivize the delivery of high-quality and cost-effective care by linking financial incentives to quality measures
Behavioral health programs are those services and supports that address the mental, behavioral, emotional, and substance use needs of CYSHCN.
Benefits and Coverage Counseling
Some Title V programs and family leader organizations provide benefits counseling to help families understand the full range of health insurance benefits and any additional coverage options available in their state.
Care coordination helps ensure CYSHCN receive all needed services and avoids duplication. At its best, care coordination is a covered service.
The Children’s Health Insurance Program (CHIP) is a public benefits program exclusively for uninsured children whose family income is too high for Medicaid.
Data Collection and Analysis
Collecting and analyzing data about CYSHCN populations allows Title V programs to understand population needs and tailor services accordingly.
Dental and Vision Services
Access to needed dental and vision services, including preventative dental care, is an essential part of a well-functioning system of care for children and youth with special health care needs (CYSHCN).
Facilitating enrollment support, either directly or through partnerships with other organizations, can increase families’ ability to access health care services and reduce out-of-pocket costs.
EPSDT is federally mandated benefit, for all children 0 to 21 enrolled in Medicaid.
Race, ethnicity, language spoken at home, culture, number of functional difficulties, and socioeconomic factors affect access to health care and coverage for CYSHCN.
Title V programs, Medicaid agencies, and Family Leader organizations have a variety of programs that help families raising CYSHCN understand health care financing.
Children and youth in foster care are an often overlooked subpopulation of CYSHCN with unmet health care needs.
Title V gap-filling programs contribute to meeting families’ unmet needs with the aim of reducing family financial hardship and improving the health of CYSHCN.
Mandated benefits address underinsurance by requiring private health insurers to cover specific benefits, such as such as early intervention, autism services, or medical foods.
Medicaid Managed Care
Many states contract with private health insurers to manage, provide or arrange for the provision of care, and coordinate care for Medicaid enrollees.
States may request a waiver from the Centers for Medicare and Medicaid Services to cover other groups of individuals by “waiving” certain federal regulations.
In premium assistance programs, a state agency pays all or part of a family’s health insurance premiums. These programs are often implemented for low-income working families.
Even when CYSHCN have health insurance, they may face difficulties accessing healthcare services due to narrow provider networks.
TEFRA gives states the option to provide Medicaid coverage to children with severe disabilities who require an institutional level of care, regardless of family income.
Telemedicine is a capacity-building service that is of particular benefit in geographic areas where pediatric sub-specialty care is unavailable or difficult to access.
Title V-Medicaid Partnerships
Interagency coordination is a statutory requirement for both state Title V and Medicaid programs.
Transition services are the services and supports that help youth with special health care needs move from pediatric to adult systems of care.
State Title V agencies are often interested in reducing underinsurance for CYSHCN to improve health outcomes, increase access to care, and reduce family financial hardship.