Beginning in 1935, the federal government created Title V, a program of grants to states to assist with maternal and child health, with a special focus on what were then called “crippled children.” Over the years, these programs were transformed, leaving a system of block grants states can use to create a framework for maternal and child well-being. As part of the grants, states must ensure that children with special health care needs and disabilities receive care to improve their conditions, and that the state is following federal guidelines for child health.
Virtually all states use these grants to fund programs that provide care coordination for children with special health care needs, as well as diagnostic medical services and treatments. This includes making sure children have access to programs by providing transportation, translation, and other services.
States are required to spend 30% of their grants on children with special health care needs. Grants are distributed among the following four components:
- Direct Health Care Services, such as medical clinics for special conditions
- Enabling Services, such as transportation or translation
- Population-Based Services, such as newborn screening and oral health
- Infrastructure Services, such as policy, research, and needs assessment
While most programs target lower-income children, many provide at least some services for children of all incomes. These programs are designed to fill in the gaps in funding by paying for or providing services that are not provided—or are only partially covered—by insurance, Medicaid, and other programs for children with special needs.
Additional programs funded through Title V include targeted grants to organizations and hospitals to fund pediatric-specific projects, such as programs for sickle cell anemia or neuromuscular disease. Some states also use Title V funds to run early intervention programs or home and community based services waivers.
Every state has a Title V program, and approximately a third of each program must be focused on children with special health care needs. In 2013, $3.7 billion dollars, or 64% of Title V dollars, went to children with special health care needs.
According to the federal definition, children with special health care needs, “have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and…also require health and related services of a type or amount beyond that required by children generally.” This definition includes children with conditions as varied as asthma and Down syndrome; however, most Title V programs for children with special health care needs are more focused on children with complex conditions and/or disabilities.
Each state is able to create its own set of programs and services, and is also able to limit eligibility to certain groups of children, such as children with certain conditions or children of certain income levels. Some states ask families above certain income levels to contribute a percentage or pay a stipend in order to receive services.
Commonly offered services include the following:
- Medical and rehabilitative services, including diagnostic services, medical visits, durable medical equipment, therapies or other services
- Specialized clinical services, such as seizure clinic, assistive technology services, cleft lip clinic, hearing clinic, genetics/metabolic clinic, or feeding clinic
- Disease-specific services for conditions like sickle cell anemia or hemophilia
- Care coordination
- Information, referral, translation, and family education programs
- Early intervention or home and community based services (Medicaid waiver programs)
Not all states offer all services, so make sure to check your state’s program to find out what services may be available.
Current State Programs
In order to find your state’s program, visit the Maternal and Child Health’s Contact List, which includes the Children with Special Health Care Needs (CSHCN) coordinator and program website in the center column. However, this list surprisingly does not contain direct links to each state agency, so we have compiled a complete list of the 50 state programs for children with special health care needs, updated as of 4/2016.