Families of Children, Youth and Young Adults are their children’s best advocates and have an unique expertise about what works for their families and other families in their community. Common issues that most families deal with are listed below and in attempts to educate and give families information to make informed decisions; links for those issues are listed below. Family Involvement is what helps all families in partnership with professionals make the best informed decisions so all children, youth and individuals with special health care needs will have optimal health, reach their dreams and maximum potential.
The broad definition of children with special health care needs includes those who have or are at increased risk for chronic physical, developmental, behavioral, or emotional conditions who require health and related services of a type or amount beyond that required by children generally.
Federal Maternal Child Health Bureau
Children with special health care needs require a medical home: a source of ongoing routine health care in their community where providers and families work as partners to meet the needs of children and families. The medical home assists in the early identification of special health care needs; provides ongoing primary care; and coordinates with a broad range of other specialty, ancillary, and related services.
- http://www.medicalhomeportal.org// - Utah
- http://www.medicalhomeinfo.org/ - National
Families must have a way to pay for services. The problems of being uninsured and under insured are major concerns for CSHCN and their families. In addition the range of wrap-around services needed by families requires the availability of private and/or public health insurance that covers a full range of needed services.
- CHIP - http://www.health.utah.gov/chip/
Medicaid - http://www.health.utah.gov/medicaid/
- Health Insurance Risk Pool - http://selecthealth.org/portal/site/selecthealth/
(Home > Shope for a Health Plan > HIPUtah)
Office of Consumer Health Assistance - http://www.insurance.utah.gov/consumer_Health.html#HIPUtah
- SSI - http://ssa.gov/pubs/10026.html
Infants and children with high risk health conditions must be identified early in order to help assure that they and their families receive the care and assistance to prevent future morbidity and promote optimal development. Advances in brain research, the Human Genome Project, and increased effectiveness of early intervention have expanded our capacity to identify children with special health care needs and offer an opportunity for early intervention.
Organization of Services
In order for services to be of value to CSHCN and their families, the system has to be organized in such a way that needs can be identified, and services provided in accessible and appropriate contexts, and that there is a family-friendly mechanism to pay for them. Thus, effective organization of services is a key indicator of systems development.
- Online application system for state services - https://utahclicks.org/uas/
- Champions for Inclusive Communities - http://www.championsinc.org/
- On-line data base of community services - https://utahcares.utah.gov/
Families are the constants in the child's life and are pivotal in making any system work. Family members, including those representative of the culturally diverse communities served, must have a meaningful, enduring, and leading role in the development of systems at all levels of policy, programs, and practice. Family voices must be heard and families should be at each table in which decision making occurs. Thus, the involvement of families is a key indicator of systems development.
- Family to Family Health Information - http://www.familyvoices.org/
- Parent Training and Information Center - http://www.utahparentcenter.org/
- Family Information and Resources - http://www.familyvillage.wisc.edu/index.html
- Legislative Coalition for People with Disabilities - http://www.lcpdutah.org/
- Center for Cultural Competence - http://www11.georgetown.edu/research/gucchd/nccc/
Transition to Adulthood
Youth with special health care needs, as adults, must be able to expect good health care, employment with benefits, and independence. Appropriate adult health care options must be available in the community and provided within developmentally appropriate settings. Health care services must not only be delivered in a family-centered manner, but must prepare individuals to take charge of their own health care and to lead a productive life as they choose.
- Healthy and Ready to Work - http://www.hrtw.org/
- Center for Persons with Disabilities - http://www.cpd.usu.edu/
- Utah Developmental Disabilities Council - http://gcpd.org/
Children’s Hospitals and Services
- Shriners Hospitals for Children - http://www.shriners.com/
- Primary Children's Medical Center - http://intermountainhealthcare.org/xp/public/primary/
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