Integrated Community Systems of Services
Children and Youth With Special Health Care Needs
This is a family centered network of community based services that is designed to improve access to quality, comprehensive, and coordinated services that are culturally sensitive for children and youth with special health care needs (CYSHCN) and their families in Tennessee.
The D70 grant, #D70MC24125 - Integrated Community Systems of Service for Children and Youth with Special Health Care Needs, through the Tennessee Department of Health, is funded by the Health Resources and Services Administration(HRSA), Maternal and Child Health Bureau. For more information about the various systems of services, click on each of the links below.
According to the American Academy of Pediatrics, a medical home is not a building, house, or hospital, but rather an approach to providing comprehensive primary care. The primary care team develops a trusting relationship with the family and works as a partner to assure that all of the child’s needs are met.
This is a dynamic process driven by the health status and developmental progress of the child, the specific needs of the child and family, the primary care physician's expertise with children with special health care needs, and the ability of the family and/or other professionals to participate in care coordination.
A medical home is coordinated by the primary care physician or provider, and gives care that is:
- Culturally effective
- Family centered
For More Information on Medical Home:
Children and youth with special health care needs have many considerations that affect their daily lives and often require services from various agencies. Thus, the primary goal of family centered services is to promote the healthy development and well-being of children and youth with special health care needs AND their families. A core feature of these services is the key role of the family in decision making.
Family centered services are intended to include the broad range of needs: specialty care, educational/vocational, out-of-home care, family support services, public and private community services, and transition planning, that CYSHCN may require at different points in their development. The provider team works in partnership with the family to ensure that both the patient’s medical and non-medical needs are met.
Health care financing is an important part of meeting the needs of CYSHCN. Un-insured children are less likely to receive care in a medical home that addresses their comprehensive needs. While most CYSHCN are insured, many are under-insured. Their coverage may be inadequate, leading to high out-of-pocket expenses. The financing of care is one of the most challenging but important aspects of meeting the needs of CYSHCN.
The Affordable Care Act addresses some of the needs of families of CYSHCN: children will be able to remain on their parents’ health insurance until age 26 and cannot be denied coverage because of pre-existing conditions. Both of these changes will provide some financial relief to un-insured or under-insured families who struggle with healthcare costs. For more information about the Affordable Care Act and CYSHCN, please clink on the link below:
For more information about the Affordable Care Act, please click on the link below:
Care coordination is a process that facilitates the linkage of children and their families with appropriate services and resources in an organized effort to achieve good health. Care coordination for children with special health care needs often is complicated because there is no single point of entry into the multiple systems of care. Economic and sociocultural barriers to coordination of care exist and affect families and health care professionals.
Care coordination involves managing the following activities:
- Assessing, planning, implementing, and evaluating options and services to meet the individual needs of the child/youth and family;
- Coordinating care among multiple providers;
- Providing access to continuous and comprehensive care;
- Connecting families to other families with similar situations for support;
- Improving health, developmental, educational, vocational, psychosocial and functional outcomes;
- Maximizing efficient and effective use of resources.
Families of CYSHCN can face a complex healthcare system that is hard to navigate. When families receive services that are both culturally and language appropriate, it increases their ability to better care for their children and allows for a family-professional partnership. This means families are working together with their children’s healthcare providers to improve medical services and access while reducing health care disparities.
It is key that the family as well as the child understand the child’s condition and care plan. This means that the family is able to communicate with providers, and that providers can address their beliefs, as well as cultural and linguistic preferences and needs. Culturally effective health care improves the quality of services and health outcomes for children and youth with special health care needs.
The D70 Implementation Grant is partnering with Tennessee Disability Coalition/Family Voices of Tennessee to provide the following family centered services:
- Decision making
- Family role in the child’s life
- Family to family peer support
- Transition to adulthood
- Cultural sensitivity
- Information about and referrals for health care and community resources
- Patient-family centered care workshops
- Tennessee Parent to Parent Matching Program
- Medical home
For more information, please click on links below:
Transition planning is a process that is personal, individualized, deliberate, coordinated, developmentally appropriate, age appropriate and culturally competent.
Children, young adults, and their families experience many transitions, large and small, over the years. Transition for children and youth with special health care needs is a continuum of changes. Each transition is an opportunity to help the child, young adult, and family gain the skills to optimize success and manage future transitions. As young adults reach adulthood, they need information to help make their transitions smooth and effective.
Transition planning assures that your child receives services necessary to make appropriate transition to:
- Adult health care
Your child’s Transition Plan would include services necessary to assure transition to all aspects of adult life which include:
- Independent living
- Legal (conservatorship/guardianship)
- Educational / Vocational
- Family resources
- Additional resources
For More Information on Transition :
- Self Advocacy: Empowering Students to Request Assistance & Support
- Self Directed IEPs: Take a Leadership Role and Guide Your Own Future
- Further Education: College & Post-High School Educational Opportunities for Students with Intellectual and Developmental Disabilities
- College: So Now You’re a Freshman: Self Advocacy on a College Campus
- Job Seeking: All Eyes on Me: How to Build a Great Resume and Have an Awesome Interview
- Employment: Take this Job & Keep It! Making a Good First Impression in the Workplace
- Dropout Prevention: Engaging Students in Planning for the Future
- Parent’s Role: How Parents Can Support Their Young Adult During Transition
- Community: Everybody Knows My Name in My Community