Children & Youth with Special Health Care Needs and Connecticut's Medical Home Initiative
Connecticut Medical Home Family Satisfaction Survey - Click here
Transition to Adulthood Surveys - Click Here
Children & Youth with Special Health Care Needs (CYSHCN) are those who have or are at increased risk for a chronic physical, developmental, behavioral or emotional condition and require health and related services beyond that required for children in general. The U.S. Department of Health & Human Services estimates there are approximately 139,453 CYSHCN in Connecticut.
The Child Development Infoline (CDI) For more information on the Connecticut Medical Home Initiative for Children and Youth with Special Health Care Needs (CYSHCN) or to speak to a CDI care coordinator call CDI toll free at: 1-800-505-7000.
RESPITE AND EXTENDED SERVICES FUNDS
Respite is planned or emergency temporary relief that can be offered once or multiple times to family caregivers who are caring for individuals with special needs such as a disability or chronic or terminal illness.
Please note that due to the limited availability of funds, there is a $500 per family maximum per year for Respite funds, including camp within the availability of funds.
DPH conducted its own statewide assessment of the needs of families of CYSHCN and the providers who serve them: 306 families and 223 practitioners responded to the study, which found that 31% of families had no care coordination. In addition, approximately 40% of all those surveyed felt that the largest unmet need was for non-medical services such as respite services, after-school programs and summer camps.
There was a consensus in both the family and provider surveys that providers did not always effectively address the impact that caring for CYSHCN had on the family. Providers also cited a need to have additional materials to help them provide more effective family-centered care.
Get Creative About Respite Guide
The Get Creative About Respite Guide provides a way for you, as a family member or other caregiver, to communicate with the people who provide respite care for the child or adolescent in your life who has special needs.
Directions: Resources for Your Child’s Care: Connecticut Edition
Directions is a guide to help you plan and coordinate care for your child or adolescent with special health care needs. In Directions you will find: ways to organize your child’s health information; information about caring for your child’s special needs; resources; and tips from other parents of children with special health care needs.
A medical home is not a building, house or hospital, but rather an approach to providing health care services in a high-quality and cost-effective manner. Children and their families who have a medical home receive the care that they need from a pediatrician or pediatric health care professional whom they know and trust. The professionals and families act as partners in a medical home to identify and access all the medical and non-medical services needed to help children and their families achieve their maximum potential.
CYSHCN Training Materials
MEDICAL HOME ADVISORY COUNCIL
The Medical Home Advisory Council (MHAC) was established to provide guidance and advice to the CT Department of Public Health in its efforts to improve the community-based system of care for children and youth with special health care needs (CYSHCN) by ensuring their connection to a medical home that is accessible, compassionate, comprehensive, coordinated, continuous, culturally effective and family-centered.
The MHAC's membership includes representation from parents (families/caregivers) of CYSHCN, partners in the Connecticut Medical Home Initiative, service providers, community-based organizations, and public and private agencies.
Youth with special health care needs have additional concerns to address as they make plans to transition to adult life. The Department of Public Health is fully committed to fostering a system that will provide all youth with special health care needs the services necessary to make successful transitions to all aspects of adult life including adult health care, work and independence.
This website provides links to many websites focusing on successful transition for youth with special health care needs.