Every state has services for children with special health care needs that are funded by the Maternal and Child Health Services Block Grant, or Title V of the Social Security Act. Title V provides a variety of programs such as rehabilitation services for children who are blind and disabled.
Title V programs
These programs provide access to medical services and identification, diagnosis, treatment and rehabilitation of children under the age of 18and have or are at increased risk for a chronic physical, developmental, behavioral or emotional condition and who also require health and related services of a type or amount beyond that are generally required by children.
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 CSHCN including assisting with:
- Delivery of health care services. Organization and delivery of health care services that meet the emotional, social and developmental needs of children.
- Development of health care plan. Integration of families into all aspects of developing and updating the health care plan.
- Support for families. Support for families based on alternatives and choices that meet their needs and strengths.
- Facilitation of professional collaboration. Facilitation of family and professional collaboration at all levels, especially in planning, implementing and evaluating programs and their related policies and practices.
Additional benefits of Title V programs may include early identification of health or developmental problems; screening or assessment of the child and family's concerns, priorities and resources; tracking or monitoring; and therapeutic intervention(s) including family education and support and resource identification, referral and coordination.
Determining eligibility for Title V programs
Title V programs vary state to state, but eligibility is determined by:
- Age. Children are eligible from birth through age 18 (21 years of age and older in some states).
- Medical criteria. Medical eligibility is determined at the local CSHCN office.
- Income. Families must meet established income eligibility guidelines. In most states, parents are asked to financially participate in the medical care of their child based on a sliding scale fee and to use any third party coverage they may have available.
Where can I get more information on each state's Title V program?
Title V programs are available in each of the 50 states; the District of Columbia; American Samoa; the Federated States of Micronesia, Guam, Marshall Islands, Northern Mariana Islands, and Palau; Puerto Rico; and the Virgin Islands. Use the following resources to locate and learn more about the Title V: CSHCN program in your state.
Title V designated state Maternal and Child Health toll-free hotlines.
Title V legislation requires that state MCH agencies maintain a toll-free hotline to aid families in obtaining information about state Title V programs and providers. The Health Resources and Services Administration MCH website provides a directory of state MCH toll-free hotlines that provide the hotline name and telephone number. The national Title V toll-free hotline number is 800-311-2229 (Spanish: 800-504-7081). Use the state toll-free hotlines to locate your local Title V: Children with Special Health Care Needs program.
What are Family-to-Family Health Information Centers?
Each state has MCH funded statewide centers that can assist families with CSHCN. Each center is staffed by families who have CSHCNs and expertise in federal and state public and private health care systems, and by health professionals. All Family-to-Family Health Information Centers provide information and referral, education, training and support services. Visit the MCHB's directory of FSF HICs for more information.