Heart to Heart: CHD Resources for Families & Caregivers in WA
Hours and scope of service may have changed.
American Heart Association Resources
Heart to Heart Forum in Online Support Network
Local CHD support forum for families and caregivers in WA. Register to connect with others.
AHA Washington Social Media
Facebook, Instagram, Twitter
Heart.org
Frequently Asked Questions About CHD
Heart & Stroke Encyclopedia
Watch, Learn and Live Interactive Cardiovascular Library
Insurance and Financial Support
Washington Health Benefit Exchange
wahbexchange.org
1-855-923-4633
Children’s Health Insurance Program (CHIP) and Medicaid
https://www.insurekidsnow.gov/coverage/wa
1-800-562-3022
First Hand Foundation
Accepts applications from all over the world on the behalf of children who need assistance with clinical necessities (such as surgery, medication and therapy), medical equipment and travel related to care.
816-201-1569
For the Children, Inc.
For families from the Flathead Valley area in Montana. Offers assistance with transportation, special equipment, food and lodging that is not covered by other sources.
forthechildrenfirst.org/
406-862-8146
HealthFinderWashington.org
Compare affordable health options in WA
https://www.wahealthplanfinder.org
855-420-9752
Jamie’s Heart Foundation
Financial assistance for families that have a child with CHD.
jamiesheart.org
Stone Soup Group
Information, support, training and resources to assist Alaskan families caring for children with special needs.
stonesoupgroup.org
907-561-3701 or toll free1-877-786-7327
Supplemental Security Income (SSI)
Steps to apply: ssa.gov/ssi/text-child-ussi.htm
Understanding SSI for Children: ssa.gov/ssi/text-child-ussi.htm
SSI Application Process and Applicants’ Rights: ssa.gov/ssi/text-apply-ussi.htm
1-800-772-1213 orTTY 1-800-325-0778
UnitedHealthcare Children’s Foundation (UHCCF)
Financial grants for medical expenses not covered by commercial health insurance.
uhccf.org
855-698-4223
[email protected]
WA PAVE
Assists in applying for insurance or paying for child’s medical bills
wapave.org
253-565-2266 or toll free1-800-5-PARENTS (575-7368)
[email protected]
WA Prescription Drug Program (WPDP) Discount Card
hca.wa.gov/about-hca/prescription-drug-program
Enroll: modahealth.com/SecuredFormsWeb/ODS/drug_card_wpdp.jsp
Enroll by phone: 1-800-913-4146
WA State Department of Social and Health Services (DSHS)
dshs.wa.gov
Resolving a complaint: 1-800-737-0617
Child support: 1-800-457-6202
[email protected]
Hospitals for CHD Patients
Heart Institute at University of Washington Medical Center
1959 NE Pacific St, 3rd Floor, Seattle, WA 98195
uwmedicine.org/locations/cardiology-uwmc
206-598-7451
Mary Bridge Children's Hospital & Health Network
317 Martin Luther King Jr. Way, Tacoma, WA 98405
marybridge.org
253-403-1000
Providence Center for Congenital Heart Disease
Sacred Heart Children's Hospital
101 W. 8th Ave., Suite 4300, Spokane, WA 99204
washington.providence.org
509-474-6707
Sacred Heart Children’s Hospital: 509-474-3131
Providence Northwest Heart & Lung
62 W. 7th Ave, Suite 110, Spokane, WA 99204
washington.providence.org
509-456-0262
Seattle Children’s Heart Center
4800 Sand Point Way NE, Seattle, WA 98105
seattlechildrens.org/clinics/heart
206-987-2515
Swedish Maternal and Fetal Specialty Center
1229 Madison, First Hill Campus, Nordstrom Tower, Suite 750, Seattle, WA 98104
swedish.org
206-386-2101
Clinics for CHD Patients
Mary Bridge Children's Hospital & Health Network
marybridge.org/locations/
Providence Health & Services
washington.providence.org/locations-directory
Seattle Children's
seattlechildrens.org/clinics/heart/contact-locations
UW Medicine
wmedicine.org/specialties/heart-institute#featured-clinics---
Transitioning from Child to Adolescent Care
Adult Congenital Heart Disease Program
Shared by Seattle Children’s and the University of Washington Medical Center
seattlechildrens.org/clinics/heart/treatments-and-services/adult-congenital-heart-disease
206-987-2015
Support for Parents of CHD Kids
Heart-to-Heart
This parent-led support group welcomes families who are dealing with congenital heart defects (CHD), heart conditions from illness or heart transplant, who have learned their unborn baby may have a heart problem, or who are grieving the loss of a child to a heart condition. This group is also a place for our kids and their siblings to meet others who have gone through similar times. Meets at Seattle Children’s main campus the second Sunday of most months at 2:30 p.m.
seattlechildrens.org/clinics/support-groups/
[email protected]
Parent facilitator: Dr. Josephine Young
Kids with Heart National Association for Children’s Heart Disorders, Inc.
Provides CHD-related books
kidswithheart.org
1-800‐538‐5390
Linked by Heart-Northwest Region
Facebook private group page supporting and linking families affected by Hypoplastic Left Heart Syndrome (HLHS); offers an added layer of emotional support, consistent communication, and localized resources for HLHS families.
linked-by-heart.org
Little Hearts, Inc.
Information about CHD and the basics on how to live with CHD.
Toll-free 1-866‐435‐HOPE
Mended Hearts of Spokane
mendedheartsofspokane.org
509-622-2912
[email protected]
Mended Little Hearts
Provides patients and families of children with congenital heart disease many services that directly improve their quality of life.
mendedhearts.org/about-us/about-mended-little-hearts/
Pediatric Congenital Heart Association
Hosted at Seattle Children’s Hospital
seattlechildrens.org/clinics/support-groups/
[email protected]
Seattle Children’s Hospital Heart Center
Patient and family resources
seattlechildrens.org/clinics/heart/patient-family-resources/
Support for Families of Children with Developmental Disabilities or Healthcare Needs
Parent to Parent (P2P) Programs of Washington State P2P Office
425-641-7504
[email protected]
Seattle Children’s Parent Support Program
seattlechildrens.org
206-987-1119
[email protected]
Office: 4800 Sand Point Way NE, Seattle, WA, 98105
Washington State P2P Programs
Chelan/Douglas Counties
Support, information, workshops, newsletter, social activities, and referrals provided. Helping parent trainings once per year.
facebook.com/chelandouglasparent2parent/
Email: [email protected]
509-423-8527
Hispanic Outreach (509) 860-8961 or email [email protected], [email protected]
Location: 23 South Wenatchee Avenue, Suite 203, Wenatchee, WA 98801
Grant/Adams Counties
Family social events, mom’s night out, café chat, weekly parent meetings, home equipment loan program, lending library, quarterly newsletter, disability awareness training, Facebook pages and groups.
mlchc.org
509-765-0674 or 800-371-8638
[email protected] or [email protected]
Location: 605 Coolidge Street, Moses Lake, WA 98837
Kittitas County
Parent support meetings, family social events, newsletters, workshops, information and referral.
509-929-7277
[email protected]
PO Box 837, 111 East University Way, Ellensburg, WA 98926
Benton/Franklin Counties
Parent Support group with educational classes, activities for families, quarterly newsletter with The Arc of Tri-Cities, Senior Caregiver Project, provides education and social activities for parents and youth.
arcoftricities.com or facebook.com/p2ptricities/
509-783-1131, ext. 108
[email protected] or [email protected]
Location: 1455 Fowler Street, Richland, WA 99352
Spokane/Lincoln/Whitman Counties
Parent support group and workshops, Parents 4 Life monthly meetings, newsletter, lending library, transition support, guardianship and IEP referrals, annual holiday party and summer picnic, annual family support conference in the spring.
arc-spokane.org or facebook.com/SpokaneP2P/
509-328-6326, ext. 8323
[email protected]
Location: 320 East 2nd Avenue, Spokane, WA 99202
Walla Walla/Columbia/Garfield/Asotin Counties
Support, information, newsletter and referral provided. Helping Parent trainings once per year.
wwvdn.orgorfacebook.com/WallaWallaParent2Parent/
872-701-0007
[email protected] or [email protected]
PO Box 1918, Walla Walla, WA 99362
Island County
Support, resources, networking opportunities and referral options, monthly newsletters and events, latest research, legislative activity and support group information. Sponsors or co-sponsors several support groups including Spanish all over Whidbey Island.
islandcountywa.gov/Humanservices/ or facebook.com/islandcountyparent2parent
360-632-7539
[email protected]
PO Box 5000, Coupeville, WA 98239
Skagit County
Resources, lending library, (autism, mothers, general, teens, support meetings Anacortes) educational workshops, recreational activities, annual helping parent training, annual moms’ events, annual Buddy Walk, monthly Hispanic family event (support, education and/or social), Spanish translation available.
p2pskagit.org orfacebook.com/SkagitP2P
360-416-7570
[email protected] or [email protected] or [email protected]
Location: 320 Pacific Place, Mt. Vernon, WA 98273
Snohomish County
Helping Parent, Mothers Network, Fathers Network, autism support group, English & Spanish parent groups, monthly parent speaker night, Lego club, family activities, Sibshops, special education speakers and support, caregiver support group, weekly/bi-weekly Arc happenings e-mail newsletter with events & resources, website calendar, book and video lending library.
arcsno.org
(425) 258-2459
[email protected], [email protected], [email protected] or [email protected]
Location: 2500 Hewitt Avenue, Suite 300, Everett, WA 98201
Whatcom County
Bi-monthly newsletter, monthly support meetings, family inclusive events, parent workshop, super sitter training, helping parent training, Sibshops, Hispanic outreach family events, book & video lending library, and parent matches.
360-715-0170
[email protected], [email protected], [email protected] and [email protected]
Location: 2602 McLeod Road, Bellingham, WA 98225
Clallam County
Parent support, seminars, social activities and information
clallammosaic.org
360-406-1215
[email protected]
PO Box 3081, Sequim, WA 98382
Grays Harbor/Pacific Counties
Parent and family emotional support and guidance in navigating our complex system, informational resource and referral via phone, e-mail, Facebook and website. Quarterly newsletter and bi-monthly email bulletin. Educational workshops and presentations on schools IEP (Individual Education Plan) and 504 plans, transition services, guardianship, wills and trusts, and other topics. Life skills and social events, summer youth employment program. Annual helping parent training.
arcgh.orgorfacebook.com/groups/515908978594356/ and facebook.com/arcgh
360-537-7000
[email protected]
Location: 523 West First Street, PO Box 1794, Aberdeen, WA 98520
Kitsap/Jefferson Counties
Newsletter, workshops, resources
penarc.org/orfacebook.com/thearcofkitsapandjeffersoncounties/
360-377-3473, ext. 103
Location: 3243 North Perry Avenue, Bremerton, WA 98310
Thurston/Mason Counties
Spanish language line, Helping Parent, P2P support groups, Down Syndrome support and activities, Mom to Mom, Sibshops, family activities, annual family picnic, Buddy Walk, infant/toddler early intervention program (ESIT), SPO support, transition/IEP support, Angels and Butterflies Grief support, toy/equipment/book lending program, information and referral, website, monthly newsletter, parent education.
ssp2p.org or facebook.com/SSP2P
Main & Spanish Language Line: 360-352-1126
Toll-Free: 877-352-1126
[email protected]
Location: 1012 Homann Drive SE, Lacey, WA 98503
King County
Parent support groups, information and referral, e-mail support and information groups, parent education, family events in English, Spanish and for African American families.
arcofkingcounty.org or facebook.com/arcofkingcounty/
206-829-7053 or Spanish 206-829-7030
Location: 233 6th Avenue North, Seattle, WA 98109
Pierce County
Community inclusion program, listserve support , information and referral, Down Syndrome support group , mom’s night out, person centered planning workshops, Spanish support group, conversations & coffee, PURPAS autism group
wapave.org or facebook.com/PAVE.WA/
253-565-2266
[email protected] or [email protected]
Location: 6316 South 12th Street, Tacoma, WA 98465
Clark County
Social gatherings, support groups, newsletter, lending library
arcswwa.org or facebook.com/CCP2P/
360-953-1597
[email protected] or [email protected]
PO Box 2608, Vancouver, WA 98668
Cowlitz County
Monday Parent Stay and Play Playgroup, weekly respite program, case management, DDA eligibility, IEP/504 school support, transition services, guardianship & trust support, lending library, 1:1 parent support
lifeworkswa.org/
(360) 425-5494
[email protected]
Location: 906 New York Street, Longview, WA 98632
Klickitat County
(971) 236-8791
[email protected]
Location: 9414 NE Fourth Plain Road, Vancouver, WA 98662
Lewis County
Monthly parent support meetings, newsletter, resource and referral service, video and book lending library, Helping Parent Training, educational trainings and family events, transition support, Sibshops, community education.
reliableenterprises.org or facebook.com/lewiscountyparent2parent/
360-520-9299
[email protected]
PO Box 870, 203 West Reynolds Ave., Centralia, WA 98531
Whatcom Center for Early Learning (WCEL)
Provides comprehensive, family centered early intervention services to children ages birth to three with developmental disabilities and delays.
wcel.net
360-671-3660
Contact: Ann-Marie Sather, Director of Early intervention,[email protected]
Locations:
Big Blue House Bellingham Office: 2001 H Street, Bellingham, WA 98225
Little Brick House Ferndale Office: 2185 Ferndale Terrace, Ferndale, WA 98248
Other Sources of Information
Adult Congenital Heart Association
achaheart.org
US Centers for Disease Control and Prevention
Congenital Heart Defects info
Heart and Stroke Foundation of Canada
heartandstroke.ca
