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  • Family Resource

    Patient Advocate Foundation

    Patient Advocate Foundation serves as a liaison between patients and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relating to a patient's condition.

    Website: www.patientadvocate.org

  • Family Resource

    Regional Centers

    The California Department of Developmental Disabilities provides screening and assessment for developmental disabilities in children through Regional Centers. Once a developmental disability is determined, case managers help families/caregivers access care. Some of the services provided by the Regional Centers include: family counseling; lifelong care planning and coordination; Early Intervention services for at risk infants; and, community education about developmental disabilities.

    See a list of regional centers here.

  • Key Organization/Website

    Study Finds Disparity in Care of Children with Special Needs

    Chronically ill children with private insurance are less likely to be admitted to a California hospital offering specialized care than those with public insurance, a study by Lucile Packard Children's Hospital and the Medical School found.

    See the story here.

  • Key Organization/Website

    Support for Families of Children with Disabilities

    Support for Families is a parent-run San Francisco-based nonprofit organization founded in 1982. We support families of children with any kind of disability or special health care need as they face challenges. Families of children with disabilities will have the information, resources and support they need to make informed choices for their children.

    Website: www.supportforfamilies.org

  • Family Resource

    Support for Families of Children with Disabilities

    Support for Families is a parent-run San Francisco-based nonprofit organization founded in 1982. We support families of children with any kind of disability or special health care need as they face challenges. Families of children with disabilities will have the information, resources and support they need to make informed choices for their children.

    Website: www.supportforfamilies.org

  • Key Organization/Website

    The Association of Maternal and Child Health Programs

    The Association of Maternal & Child Health Programs is a national resource, partner and advocate for state public health leaders and others working to improve the health of women, children, youth and families, including those with special health care needs.

    AMCHP's members come from the highest levels of state government and include directors of maternal and child health programs, directors of programs for children with special health care needs, and other public health leaders who work with and support state maternal and child health programs. Our members directly serve all women and children nationwide, and strive to improve the health of all women, infants, children and adolescents, including those with special health care needs, by administering critical public health education and screening services, and coordinating preventive, primary and specialty care. Our membership also includes academic, advocacy and community based family health professionals, as well as families themselves.

    AMCHP builds successful programs by disseminating best practices; advocating on their behalf in Washington; providing technical assistance; convening leaders to share experiences and ideas; and advising states about involving partners to reach our common goal of healthy children, healthy families, and healthy communities.

  • Family Resource

    The California Children’s Services (CCS) Program

    The CCS program is a partnership between county health departments and the California Department of Health Care Services. The program provides medical case management, and physical and occupational therapy services to children under age 21 with CCS-eligible medical conditions. Some examples of CCS-eligible conditions include cystic fibrosis, hemophilia, cerebral palsy, heart disease, cancer, traumatic injuries, and some infectious diseases.

    See a list of county offices for California Children's Services here.

  • Key Organization/Website

    The Child and Adolescent Health Measurement Initiative

    The Child and Adolescent Health Measurement Initiative (CAHMI) developed and maintains a number of quality measurement tools and strategies that assess the quality of care provided to children and young adults.

    Website: www.cahmi.org

  • Key Organization/Website

    The National Survey of Children with Special Health Needs Data Resource Center

    The National Survey of Children with Special Health Care Needs (NS-CSHCN) takes a close look at the health and functional status of children with special health care needs in the U.S.—their physical, emotional and behavioral health, along with critical information on access to quality health care, care coordination of services, access to a medical home, transition services for youth, and the impact of chronic condition(s) on the child’s family.

    Website: childhealthdata.org/learn/NS-CSHCN

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