Medical Home Basics

Checklist and Tools

Learning Collaborative

Medical Home Measures

Identifying Patients with Special Needs

Developmental Surveillance & Screening

Care Coordination

Partnering With Families

Family to Family Support

Accessing Community Resources

Culturally Effective Care

Sharing Sensitive News

Transition

Oral Health

Office Organization and Management

Finances and Data Management

Quality Improvement

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Family to Family Support

Linking to other families dealing with the same diagnosis or similar issues is an important step for many parents of children with special health care needs. Parents rank parent support groups in the top three 'wishes' on a list of support services - after information about community resources and financial information/help. (Liptak GS, Revell GM, Pediatrics. 84:465-471, 1989).

The link may be to another family in your practice who has indicated willingness to connect, inform and share experiences.  Or you may link to others in the local community, region or nation.  There are many internet support groups and information resources.  Encourage parents in your practice, your local family resources coordinator and the public health nurse Children with Special Health Care Needs (CSHCN) coordinator to share information on useful resources they have found. 

Statewide Family to Family Support Organizations

Parent to Parent

Washington State parent network providing emotional support and information to parents who have children with disabilities or developmental delays. 1-800-821-5927

www.arcwa.org/parent_to_parent.htm 

Fathers Network

Advocates for and provides support and resources for all men and families who have children with special needs.  www.fathersnetwork.org

PAVE (Parents Are Vital in Education)

Statewide parent training and information center providing assistance to families who children with disabilities, ages birth through adulthood. 1-800-5 PARENT 

www.washingtonpave.org

See Family Support Organizations page for more groups

National Resource Guide

In January of each year Exceptional Parent Magazine updates and publishes a Resource Guide, including a listing of ‘National Resources for Specific Disabilities and Conditions’.  Condition specific and general organizations are listed with mailing address, e-mail address, phone and fax numbers (many have 1-800 numbers).  A code by the agency name indicates the services they provide, such as networking and matching of families, dissemination of information brochures, journal articles, books and newsletters, national conferences, and referrals to local organization chapters.

The guide is free with the January issue of the magazine or it can be ordered (call 1-800-535-1910) or purchased at bookstores for about $10. 

Other

The Pediatrician's Role in Family Support Programs (RE0022)

Pediatrics. American Academy of Pediatrics; 2001.

http://aappolicy.aappublications.org/cgi/content/full/pediatrics%3b107/1/195