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
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.
Photo centrolasamericas.org
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.
Resources
Parent-to-Parent
Disability Specific
Exceptional
Parent Magazine (annual resource guide- specific conditions)
Parent
Center Hub-disability resources
Mental Health
Federation
of Families for Children’s Mental Health
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
Matching/Support Groups
Friends
Health Connection
American
Self-Help Clearinghouse (lists support groups)
Other Family Support:
Family
Voices/Family-to-Family Health Information Centers
Remain Hopeful,
Lauren
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.
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