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.(link opens in new window)

AHA Washington Social Media
Facebook(link opens in new window), Instagram(link opens in new window), Twitter(link opens in new window)

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(link opens in new window)

Children’s Health Insurance Program (CHIP) and Medicaid
insurekidsnow.gov/coverage/wa/index.html(link opens in new window)

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.
firsthandfoundation.org(link opens in new window)

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.
forthechildrenmt.org(link opens in new window)

Compare affordable health options in WA
https://www.wahealthplanfinder.org/(link opens in new window)

Jamie’s Heart Foundation
Financial assistance for families that have a child with CHD.
jamiesheart.org(link opens in new window)

Stone Soup Group
Information, support, training and resources to assist Alaskan families caring for children with special needs.
stonesoupgroup.org(link opens in new window)
907-561-3701 or toll free1-877-786-7327

Supplemental Security Income (SSI)
Steps to apply: ssa.gov/ssi/text-child-ussi.htm (link opens in new window)
Understanding SSI for Children: ssa.gov/ssi/text-child-ussi.htm(link opens in new window)
SSI Application Process and Applicants’ Rights: ssa.gov/ssi/text-apply-ussi.htm (link opens in new window)
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(link opens in new window)

Assists in applying for insurance or paying for child’s medical bills
wapave.org(link opens in new window)
253-565-2266 or toll free1-800-5-PARENTS (575-7368)

WA Prescription Drug Program (WPDP) Discount Card
hca.wa.gov/about-hca/prescription-drug-program (link opens in new window)
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 (link opens in new window)
Resolving a complaint: 1-800-737-0617
Child support: 1-800-457-6202

Provides help with family’s budget and insurance application
parenthelp123.org/resources/health-insurance-programs(link opens in new window)

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(link opens in new window)

Mary Bridge Children's Hospital & Health Network
317 Martin Luther King Jr. Way, Tacoma, WA 98405
marybridge.org(link opens in new window)

Providence Center for Congenital Heart Disease
Sacred Heart Children's Hospital
101 W. 8th Ave., Suite 4300, Spokane, WA 99204
washington.providence.org(link opens in new window)
Sacred Heart Children’s Hospital: 509-474-3131

Providence Northwest Heart & Lung
62 W. 7th Ave, Suite 110, Spokane, WA 99204
washington.providence.org(link opens in new window)

Seattle Children’s Heart Center
4800 Sand Point Way NE, Seattle, WA 98105
seattlechildrens.org/clinics/heart (link opens in new window)

Swedish Maternal and Fetal Specialty Center
1229 Madison, First Hill Campus, Nordstrom Tower, Suite 750, Seattle, WA 98104
swedish.org(link opens in new window)

Clinics for CHD Patients

Mary Bridge Children's Hospital & Health Network
marybridge.org/locations/(link opens in new window)

Northwest Congenital Heart Care
mednax.com/practice/northwest-congenital-heart-care(link opens in new window)

Providence Health & Services
washington.providence.org/locations-directory(link opens in new window)

Seattle Children's
seattlechildrens.org/clinics/heart/contact-locations(link opens in new window)

UW Medicine
wmedicine.org/specialties/heart-institute#featured-clinics---(link opens in new window)

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(link opens in new window)

Support for Parents of CHD Kids

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/(link opens in new window)
Parent facilitator: Dr. Josephine Young

Kids with Heart National Association for Children’s Heart Disorders, Inc.
Provides CHD-related books
kidswithheart.org(link opens in new window)

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(link opens in new window)

Little Hearts, Inc.
Information about CHD and the basics on how to live with CHD.
littlehearts.org(link opens in new window)
Toll-free 1-866‐435‐HOPE

Mended Hearts of Spokane
mendedheartsofspokane.org(link opens in new window)

Mended Little Hearts
Provides patients and families of children with congenital heart disease many services that directly improve their quality of life.
(link opens in new window)

Pediatric Congenital Heart Association
Hosted at Seattle Children’s Hospital
seattlechildrens.org/clinics/support-groups/(link opens in new window)

Seattle Children’s Hospital Heart Center
Patient and family resources
seattlechildrens.org/clinics/heart/patient-family-resources/(link opens in new window)

Support for Families of Children with Developmental Disabilities or Healthcare Needs

Parent to Parent (P2P) Programs of Washington State P2P Office

Seattle Children’s Parent Support Program
seattlechildrens.org(link opens in new window)
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.
chelandouglasp2p.com (link opens in new window)or facebook.com/chelandouglasparent2parent/(link opens in new window)
Email: p2pcoordinator@chelandouglasp2p.com
Hispanic Outreach (509) 860-8961 or email erin@chelandouglasp2p.com, espanol@chelandouglasp2p.com
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(link opens in new window)
509-765-0674 or 800-371-8638
jnewhouse@mlchc.org or cdieringer@mlchc.org
Location: 605 Coolidge Street, Moses Lake, WA 98837

Kittitas County
Parent support meetings, family social events, newsletters, workshops, information and referral.
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(link opens in new window) or facebook.com/p2ptricities/(link opens in new window)
509-783-1131, ext. 108
p2p@arcoftricities.com or mariar@arcoftricities.com
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(link opens in new window) or facebook.com/SpokaneP2P/(link opens in new window)
509-328-6326, ext. 8323
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.org(link opens in new window)orfacebook.com/WallaWallaParent2Parent/(link opens in new window)
p2p@wwvdn.org or p2pespanol@wwvdn.org
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/(link opens in new window) or facebook.com/islandcountyparent2parent (link opens in new window)
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 (link opens in new window)orfacebook.com/SkagitP2P(link opens in new window)
p2p@sparckids.org or Amanda@sparckids.org or Hispanicp2p@sparckids.org
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(link opens in new window)
(425) 258-2459
jamie@arcsno.org, alaina@arcsno.org, mely@arcsno.org or Lynnea@arcsno.org
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.
karlene@p2pwhatcom.org, melissa@p2pwhatcom.org, info@p2pwhatcom.org and familia@p2pwhatcom.org
Location: 2602 McLeod Road, Bellingham, WA 98225

Clallam County
Parent support, seminars, social activities and information
clallammosaic.org (link opens in new window)
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.org(link opens in new window)orfacebook.com/groups/515908978594356(link opens in new window)/ and facebook.com/arcgh (link opens in new window)
Location: 523 West First Street, PO Box 1794, Aberdeen, WA 98520

Kitsap/Jefferson Counties
Newsletter, workshops, resources
penarc.org/(link opens in new window)orfacebook.com/thearcofkitsapandjeffersoncounties/ (link opens in new window)
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(link opens in new window) or facebook.com/SSP2P(link opens in new window)
Main & Spanish Language Line: 360-352-1126
Toll-Free: 877-352-1126
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 (link opens in new window)or facebook.com/arcofkingcounty/ (link opens in new window)
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(link opens in new window) (link opens in new window)or facebook.com/PAVE.WA/(link opens in new window)
MLehosky@wapave.org or dvandervort@wapave.org
Location: 6316 South 12th Street, Tacoma, WA 98465

Clark County
Social gatherings, support groups, newsletter, lending library
arcswwa.org (link opens in new window)or facebook.com/CCP2P/(link opens in new window)
brendat@arcofclarkcounty.org or mariar@ccparentcoalition.org
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/(link opens in new window)
(360) 425-5494
Location: 906 New York Street, Longview, WA 98632

Klickitat County
(971) 236-8791
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(link opens in new window) or facebook.com/lewiscountyparent2parent/(link opens in new window)
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(link opens in new window)
Contact: Ann-Marie Sather, Director of Early intervention,ann-marie@wcel.net
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(link opens in new window)

US Centers for Disease Control and Prevention
Congenital Heart Defects info(link opens in new window)

Heart and Stroke Foundation of Canada
heartandstroke.ca(link opens in new window)