Caregivers
Resources, Support, Advocacy
and information
Links and information shared through the chat during the Zoom sessions:
Sibling Support
Project: siblingsupport.org/
Founded in 1990, the Sibling Support Project is the first national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special health, developmental, and mental health concerns.
Parent to Parent Washington:
Learning that your child has a disability or a chronic health need can be a frightening and isolating experience. You are not alone.
Through Parent to Parent you will find support, resources and other parents who understand what you are going through.
Visit Clallam Parent to Parent
WA Fathers Network: fathersnetwork.org/
A powerful voice for fathers and families of children with a disability
or special health care need
Podcast from
Autism Confidential
Featuring Jess Ronne
Episode 10: Unseen: Jess Ronne and a New Documentary about Extreme Caregiving
"The catch is this: These resources, limited as they may be, have trained Ethan in skills for jobs that don't exist and a life he can't have."
Recommended book:
Hard Landings: Looking Into the Future for a Child with Autism
by Cammie McGovern
“After sleepless nights, intensive research, and twenty-one years of raising a child, Ethan, with autism and intellectual disability, Cammie McGovern is approaching a distinct catch-22. Once Ethan turns twenty-two, he will fall off the "Disability Cliff."
By aging out of the school system, he'll lose access to most social, educational, and vocational resources.”
Want to do more?!
Take these 5 easy advocacy action steps.
By Whitney G. Stohr, JD/LLM
kidsrisefund@gmail.com
Step 1:
Sign up to receive action emails!
For State Level Advocacy:
The ARC of Washington
For National Level Advocacy:
The ARC U.S.:
National Alliance For Caregiving:
Step 2:
Share Your Story with Your Legislators
Send an email to your state and federal legislators sharing your story and telling them about the issues that matter most to you as a family caregiver.
Find your legislators at:
Step 3:
Join Your Local Parent Family Coalition
Parent / Family Coalitions are local efforts to help parents organize their voices and be heard on issues important to them.
Learn how to connect with your local coalition at:
Step 4:
Raise Awareness During National Family Caregivers Month This November
National Family Caregivers Month is a time to recognize family caregivers, raise awareness about caregiving issues and advocate for increased caregiver supports.
Learn more at:
https://www.caregiveraction.org/national-family-caregivers-month
Step 5:
Learn More About Caregiving Policy
Follow these accounts on Twitter to stay up to date on conversations around caregiver advocacy and public policy:
Resources from the producers of the 2022 documentary:
Unseen; How We're Failing Parent Caregivers and Why It Matters
Visit: Unseen: Support Caregivers
12 Ways to Support Parent Caregivers
Practical ideas for supporting the parent caregivers in your neighborhood, school, church or organization, submitted by parent caregivers.
Say This, Not That
Sometimes it can be confusing to know the right thing to say. Get suggestions submitted by parent caregivers to guide you.
English and Spanish versions are available
Caregivers of Children with Rare and/or Serious Illnesses
The Circle of Care Guidebook is intended to help Caregivers navigate through the varied experiences and challenges of rare and serious medical conditions, guided by the insights, achievements, and learnings of other caregivers and experts.
The extensive array of topics covered in this Guidebook (nearly 100) underscores the many aspects of life and care that are impacted when caring for a child with a rare disease. Fortunately, there are a wide variety of helpful resources and organizations available to support and direct Caregivers, many of which are also highlighted in this document.
The Issues:
- Over 80% of people with developmental disabilities live with their families – most, for their lifetime
- We have over 2100 senior family caregivers still caring for their son/daughter, many well into their 70s, 80s, 90s
- Nationally, over 1 in 5 people have been waiting over 10 years for services
- Washington state spending in DD services has gone down by 7% over the past 5 years
- Over 14,000 people eligible for supports, but waiting
- Increasing numbers of individuals with IDD stuck in acute care and inpatient hospitals
