Sometimes the hardest thing about being a family caregiver of a child with special needs is not knowing what to expect or just needing a listening ear. There are many organizations out there to help parents of children with special health care needs.
Parent-to-Parent (P2P) matches trained volunteer parents to families of children with the same condition or facing the same or similar circumstances. The volunteers have been through many of the same experiences such as diagnosis, early intervention, and transition, or are impacted by the same systems, such as education, Maternal and Child Health Title V, mental health, or child welfare, and can offer good information. They also offer emotional support when a parent is feeling overwhelmed. P2P volunteers are also geographically matched by state so they would know of many resources ranging from therapies to recreation that are available to their family match.
Disability Specific Groups
Many national and state organizations dealing with specific conditions also help families connect. Parents can get a list of organizations either through Exceptional Parent magazine or the Parent Center Hub. Exceptional Parent puts out an annual resource guide. The Parent Center Hub has a listing of disability resources. For mental health, the Federation of Families for Children’s Mental Health and also the National Alliance on Mental Illness are excellent resources.
Other Matching Organizations
Friends Health Connection (FHC) matches individuals with specific conditions, or their caregivers. This is especially important as children transition to adult care and can have someone with whom to communicate. FHC also has an online community and offers free webinars. Another good option is a support group. The American Self-Help Clearinghouse lists support groups nationwide. Here, parents can talk to other families going through the same experiences.
Other Family Support Resources
Every state also has at least one Parent Training and Information Center and a Family Voices/Family-to- Family Health Information Center, staffed by families of children with disabilities and special healthcare needs. Contacting Parent Centers and F2F Centers can connect families to support as well as information and training around early intervention, education, healthcare, and transition to adult systems of care.
Parents of children with disabilities need to get information on their child’s condition and also talk to other families. This way they won’t feel so helpless or hopeless. Parents can talk to other families for information and support, making their family unit stronger.
Parent Magazine (annual resource guide- specific conditions)
Parent Center Hub-disability resources
Federation of Families for Children’s Mental Health
or Spanish http://translate.google.com/translate?hl=en&sl=en&tl=es&u=www.ffcmh.org (“involucrate”)
National Alliance on Mental Illness
resources only in Spanish http://www.nami.org/Template.cfm?Section=Child_and_Adolescent_Action_Center&template=/ContentManagement/ContentDisplay.cfm&ContentID=21090
Friends Health Connection
Self-Help Clearinghouse (lists support groups)
Other Family Support:
Family Voices/Family-to-Family Health Information Centers
Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (www.spanadvocacy.org), a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269. She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork.