Family Participation & Satisfaction
One of the national goals to improve maternal, infant, and child health is to
increase the proportion of children with special health care needs who receive
their care in family-centered, comprehensive, coordinated systems.
Family support services and parent education programs offer families the opportunity to learn about healthy living and well-being. Parents may need education and support to help them improve their child’s growth and development. Parent education programs and family support services are shown to strengthen families by increasing parent involvement, confidence and skills. Family satisfaction is also a crucial measure of system effectiveness. Therefore, states must provide family-centered, coordinated care.
The National CSHCN Survey provides State level data on the extent to which
families perceive that their doctors make the family feel like a partner and the
family is very satisfied with the overall care experience.
The fact sheet regarding “Outcome #1: Families are partners in decision making
at all levels” through the Data Resource Center for Child & Adolescent
Health provides information regarding the involvement of families in
health decisions. It emphasizes that a partnership between a child’s family and
their health care providers allows for an open and intentional dialogue about
his or her unique health needs.
The CDC (Center for Disease Control) Parent Portal organizes and presents information for parents and provides resources from across CDC, all in one location, making it easier for parents to find what they are looking for. The Portal is a great source for credible, accurate information in helping parents raising healthy kids and providing a safe home and community. It also is a resource for diseases and conditions that can occur, and for developmental milestones and schedules. www.cdc.gov/parents/
Family Voices National aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Through this national network, Family Voices provides families tools to make informed decisions, advocates for improved public and private policies, builds partnerships among professionals and families, and serves as a trusted resource on health care. www.familyvoices.org
The Institute for Patient and Family Centered Care serves as a central resource for policy makers, administrators, program planners, direct service providers, educators, design professionals, and patient and family leaders. By promoting collaborative, empowering relationships among patients, families, and health care professionals, the Institute facilitates patient-and family-centered change in all settings where individuals and families receive care and support. www.ipfcc.org/advance/clinician-links.html
The National Center for Family / Professional Partnerships (NCFPP) promotes families as partners in the decision-making of healthcare for children and youth with special health care needs (CYSHCN) at all levels of care. www.fv-ncfpp.org/
The National Federation of Families for Children’s Mental Health supports families in all the work that they do at the local, state and national level. Through various programs and resources, they help families and their children obtain needed resources and supports to help them lead healthy lives. www.ffcmh.org/
PACER Center is for families of children and youth with all disabilities from birth through 21 years old. The mission of PACER Center is to expand opportunities and enhance the quality of life of children and young adults with disabilities and their families, based on the concept of parents helping parents. www.pacer.org/
The Special Needs Dadvocate is a blog about fatherhood and parenting from the perspective of a father of a child with special health care needs. site.sndadvocate.org/
The North Dakota Department of Health’s Maternal and Child Health (MCH) programs have placed priority on promoting family support services and parent education programs. Parents may need education and support to help them improve their child’s growth and development. Parent education programs and family support services are shown to strengthen families by increasing parent involvement, confidence and skills. For more information on Title V efforts, see ND’s state performance measure fact sheet at www.ndhealth.gov/familyhealth/FactSheets/SPM4FamilySupportServices.pdf
The Waisman Center focuses on advancing and disseminating knowledge about developmental disabilities and neurodegenerative diseases through research, clinics, and community outreach. www.waisman.wisc.edu/info-families.htm
Why Not Fathers is a site devoted to sharing cleaning tips, cooking tips, and other things that guys need to know, but may be embarrassed to ask. whynotfathers.com/
Family Support Services in North Dakota:
Family Voices of
North Dakota aims to achieve family-centered care for all children and
youth with special health care needs and/or disabilities. Through this local
North Dakota network, Family Voices provides families tools to make informed
decisions, advocates for improved public and private policies, builds
partnerships among professionals and families, and serves as a trusted resource
on health care. http://fvnd.org/home
ND Federation of Families for Children's Mental Health is a parent-run organization focused on the needs of children and youth with emotional, behavioral or mental disorders and their families. http://ndffcmh.org
The Pathfinder Parent Center helps parents and educators to connect, plan for and become engaged in each child/person’s education. Their mission includes individuals who receive both general education and special education services from birth through age 26. www.pathfinder-nd.org
This is not meant to be an extensive list of resources. More resources may be found on our website at the North Dakota Department of Health website at www.ndhealth.gov/cshs/links.htm.