"What is Title V and How Can it Help You?"
An introduction to State Title V
Programs for CSHCN, by John Reiss*
Every state and the District of Columbia has a Title V Program for Children with Special Health Care Needs (CSHCN) that is funded, in part, through the Federal Title V Maternal and Child Health Block Grant. These programs began in 1935, when Congress passed the Social Security Act, a law designed to bring some financial and health security into the lives of America's most vulnerable citizens. The fifth article of that act, known as Title V (five), provided funds to states to develop and operate public health care programs for certain children with special health care needs as well as to establish other programs to promote the health of low income mothers and children.
In the 1930's through the 1970's most of the state Programs that were funded through Title V of the Social Security Act were called Crippled Children's Services (CCS) Programs and focused their efforts on identifying "crippled" children and providing services for the diagnosis, treatment and ongoing care of "crippled" children. Children initially served through these programs were limited to those with orthopedic problems frequently caused by Polio. In the 1960's,1970's, and 1980's there was a gradual expansion of these programs in many states, and state Title V CCS Programs began to provide health and related services to children with other serious chronic health conditions and physical disabilities, such as cerebral palsy, heart problems, hearing problems, spina bifida, cystic fibrosis, etc. In the late 1970's Congress funded state CCS Programs, through Title V, to provide case management and care coordination services to children under the age of 16 who received benefits through the Supplemental Security Income (SSI) Program.
As a result of the expansion of the eligibility criteria of state CCS Programs, more and more children with chronic illnesses, developmental disabilities, sensory impairments, and other special health needs were being served. In recognition of this expanding responsibility and in response to criticism that the term "crippled children" was stigmatizing, Congress changed the name of this program in the Title V statute to State Programs for Children with Special Health Care Needs (CSHCN). In response to this change in federal legislation all states' Title V Program's have deleted the phrase "crippled children" from their name. However, because the legislation did not mandate that states use a specific name, Title V CSHCN Programs are known by different names in different states. Names given to CSHCN Programs include: "Children's Medical Services", "Children's Special Healthcare Services", "Child Health Specialty Clinics", and "Division of Specialized Care for Children". The federal Title V legislation also gives states the flexibility to use their Title V funds to design and implement direct care programs and services that are responsive to the specific needs of CSHCN and their families in the state, and accommodate the strengths and limits of the child health infrastructure in the state. Therefore, state Title V CSHCN Programs have different financial eligibility criteria, serve different populations of children and youth with special health care needs, and provide and/or fund different sets of health care and related services. This can be confusing for a family with a child with special health needs, when moving from one state to another.
Because of the significant differences among state Title V CSHCN Programs, the Maternal and Child Health Bureau has supported the development of the online Directory of State Title V CSHCN Programs
In addition to providing direct, personal health care services to eligible children, state Title V Programs also have a responsibility to improve the quality and responsiveness of the overall health care system for children with special health care needs. State's were given this "systems development" responsibility in 1989, when Congress amended Title V of the Social Security Act, and required that state CSHCN Programs "provide and promote family-centered, community-based, coordinated care (including care coordination services) and to facilitate the development of community-based systems of services for such children and their families." The 1989 amendments also allowed state Title V Programs to continue to use federal funding to provide rehabilitation services to children under the age of 16 who receive benefits through the SSI Program.
Family-centered care is a process that focuses on ensuring that:
- the organization and delivery of health care services meet the emotional, social, and developmental needs of children;
- the families of CSHCN are integrated into all aspects of the health care plan;
- families have alternatives and choices based on their own needs and strengths and receive support for those choices, and
- the health care system facilitates family/professional collaboration at all levels, especially in planning, implementing, and evaluating programs and their related policies and practices.
To accomplish this, state Title V CSHCN programs have worked to develop meaningful partnerships with families and promote leadership by families. State programs also provide the training, guidance, and policies that create these partnerships within each community as it builds its systems and services.
Thus, the activities of state Title V CSHCN Programs are not limited to providing and paying for health care for eligible children. Rather, these Programs also fund family-to-family support organizations and support families in their efforts to play an active role in the development of program and policies that are of benefit to all children with special needs and their families.
*from the March, 2000 issue of Exceptional Parent
Magazine.
Author: John Reiss, Chief, Division of Policy and Program Affairs, Institute
for Child Health Policy, Gainesville, FL.
