Part
1 of 2
Family caregivers need both information
and support when their child is diagnosed with a new condition. There are many reputable resources for
parents of child with special needs.
Good places to
start (see Resources)
v There is an
annual resource guide from Exceptional Parent magazine that lists all the
national organizations for specific conditions.
v The Maternal & Child Health Bureau (MCHB)
has “Knowledge Paths” on some conditions for more detailed information
including research, databases, literature etc.
v The Parent
Center Hub is the new home for information formerly from NICHCY (National
Dissemination Center for Children with Disabilities.)
v The Statewide
Parent Advocacy Network (SPAN) has a fact sheet on what to do while waiting for
the school’s special education evaluation.
Other good
resources on specific conditions
Ø Health A-Z –
Health Central
Ø Health
Conditions - WebMD
Ø Health Finder
Ø American Academy
of Pediatrics-information for families
Ø Health
Topics – Medline Plus
Developmental Disabilities – Medline
Plus http://www.nlm.nih.gov/medlineplus/developmentaldisabilities.html
Disabilities - Medline Plus
For Kids Only
Kids
Health has information for families but also for children. Using this type of information may make it
easier for parents to explain the condition to their children.
Support for Family Caregivers
Parent
may also want to talk to another parent who has already gone through the same
experience. Trained volunteers are
matched with family caregivers of children with the same condition through
Parent-to-Parent. The American Self-Help
Clearinghouse also has a listing of support groups nationally.
Family
caregivers will feel more empowered once they know more about their child’s
condition.
NOTE: Part 2 will cover rare conditions and where
to find reliable information.
Resources
Exceptional
Parent magazine-annual resource guide
Knowledge
Paths-MCHB resources for families
http://www.mchlibrary.info/KnowledgePaths/index.html and
resources for families at www.mchlibrary.info/families/index.html
Parent
Center Hub-specific disabilities
Statewide
Parent Advocacy Network Fact Sheet
Kids
Health
Parent-to-Parent
Support
Groups
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.
gofundme.com/prosthetic4ourkids
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