The links we hand families most often
Waivers, guardianship, trusts, day programs, benefits counseling, estate planning. Everything below is a real organization we point families to — start wherever you are.
My kid is turning 18. Now what?
The first decisions — waivers, legal authority, and money that doesn't jeopardize benefits.
Waivers & the transition
PEATC’s resource document on the transition to adulthood.
What Virginia’s DD waivers cover and how to apply for one.
Family-Run Individual Group Homes of Virginia, as a Sponsored Residential home service provider.
Guardianship & conservatorship
Virginia’s court system guidance on guardianship.
National Guardianship Association.
Money, safely
A tax-advantaged savings and investment account for individuals with disabilities that allows them to save and invest without jeopardizing eligibility for public benefits such as Medicaid and SSI.
In an emergency
A free service that lets you create an Emergency Health Profile with information you want shared with 911 — sensory needs, medications and medical conditions, and, if you are incapacitated, contact details for backup guardians and the support your loved one needs until they arrive.
Activities, day programs & respite
Places in Northern Virginia where adults with disabilities have somewhere to go and people to see.
Overnight respite care provider for adults with an intellectual disability.
“Where phenomenal people, good friends, and great times unite to create Great Vibes.”
Day programs for adults with disabilities at four locations in Northern Virginia.
Formerly Our Stomping Ground. Creating welcoming communities and social spaces where people of all abilities gather for diverse and inclusive social activities.
In Falls Church, VA.
Organizations worth knowing
Groups that answer questions, run programs, and don't charge families to ask.
The Arc is the largest national community-based organization advocating for and with people with intellectual and developmental disabilities (IDD) and serving them and their families.
A 1:1 intake conversation with an Arc of NOVA volunteer to take a deep dive into resource options.
Many of the articles and resources are applicable to other disabilities.
A non-profit where all services are free.
Benefits counseling & advocacy
When a Medicaid or SSI question needs someone who does this all day.
Owner and advocate Ryan Duffy provides benefits counseling, planning, and advocacy related to Medicaid, Medicaid appeals, Medicaid-LTSS (CCC Plus and DD waivers), Medicaid-Medicare dual-eligibility, and SSI/SSDI. Free consultation and sliding scale fees.
Estate planning & the long view
Planning for the years when you are no longer the one providing care.
Designing a Support Plan for your Family Member. A free, self-paced online course from the Arc of California with a step-by-step process for planning your family member’s future care.
From the Arc.
From the Special Needs Alliance.
Found something that helped your family?
Send it to us and we’ll add it here. This list grows because families share what worked.