Family & Caregiver Resource Center
Life after 18 doesn’t have to feel like a cliff.
When school-based services end, many Northern Virginia families are suddenly handed forms, waiting lists, and unfamiliar acronyms — all at once. We’ve gathered the essentials in plain language so you can take the next step with confidence, and so the adult you love stays at the center of every decision.
From Our Live Seminar
Securing Financial Futures: Navigating SSI, SSDI & Medicaid
Free family seminar · Co-hosted with Floris United Methodist Church · February 2026 · Presenters: Ryan D. Buck and Jerry L. Hulick
Families filled the room to ask one big question: how do we protect benefits and plan for the future at the same time? Our presenters covered:
- The difference between entitlement programs like SSDI and public-assistance programs like SSI and Medicaid
- Why planning ahead helps protect the benefits your family member relies on
- Real questions from families, answered in a live Q&A
Who this is for
Parents, guardians, caregivers, and adults with disabilities planning for life after school. Our family seminars are free to attend, and no prior knowledge is needed.
Start with the four big topics
Information reviewed October 2026. Rules and waiting lists change, so always confirm with the official source linked in each section.
Legal Authority & Decision-Making
At 18, the law treats every person as an adult who makes their own decisions — even if a parent has always handled medical, school, and money matters. That doesn’t mean your family member is on their own. There is a range of options, from lighter to heavier support, and the best fit is usually the lightest one that keeps the person safe and respected.
Key terms
- Supported decision-making: The adult makes their own choices, with trusted people helping them understand options and communicate. Ask an attorney how these agreements work in Virginia.
- Advance medical directive: Names who can speak for the adult about medical care if they can’t. The adult must understand what they are signing.
- Power of attorney: Lets a trusted person handle money or paperwork. It also requires the adult to understand what they are signing.
- Guardianship: A Virginia circuit court appoints someone to make decisions. It removes rights, so courts look for less restrictive options first — treat it as a last step, not a first one.
Your next 3 steps
- Ask the adult: “Which decisions do you want help with, and who do you trust to help?”
- Meet a special-needs or elder-law attorney around the 18th birthday to compare options — before a crisis.
- Gather medical records and a current list of doctors and medicines, and ask about signing releases so you can keep talking with providers.
Official sources
Virginia Medicaid Waivers
Medicaid waivers pay for support that helps adults live and take part in their community — personal assistance, day and employment supports, respite, and in-home help. Virginia has more than one waiver, and they work very differently: some have long waiting lists, and some do not. Getting on the right list early is one of the most useful things a family can do.
Key terms
- DD Waivers: Virginia’s three Developmental Disability Waivers are Building Independence, Family & Individual Support, and Community Living. Access is through a waiting list managed by your local Community Services Board (CSB).
- Priority 1, 2, 3: Waiting-list levels based on how soon services are needed — Priority 1 is the most urgent. Your CSB support coordinator assigns the level, and it can be updated when life changes, such as leaving school.
- CCC Plus Waiver: For people who need a high level of daily care and meet medical-need rules. It includes personal care and respite, and it does not have a waiting list.
- Consumer-directed services: The adult or a representative hires and directs their own attendants, with help from a services facilitator — more choice and control.
Your next 3 steps
- Call your local CSB (Fairfax-Falls Church CSB for most of our families) and ask about the DD Waiver waiting list or your current priority level.
- Tell them if the adult is leaving school — it can affect priority.
- Ask whether a CCC Plus Waiver screening makes sense right now.
Official sources
Virginia DMAS — Medicaid waivers · DBHDS — Waiver information for families
Income & Wealth Preservation
Benefits at 18 work differently than before. Social Security looks at the young adult’s own money — not the parents’ — which often makes a person eligible for the first time. At the same time, savings, gifts, and inheritances can accidentally cost someone their benefits. A little planning protects both.
Key terms
- SSI at 18: Once the adult turns 18, Social Security counts only their own income and resources. SSI has a resource limit of $2,000 for an individual.
- Childhood Disability Benefits: For adults whose disability began before age 22 and who have a parent who is retired, has a disability, or has passed away and worked enough. Based on the parent’s work record.
- ABLE accounts (Virginia: ABLEnow): Tax-advantaged savings that generally don’t count against SSI or Medicaid up to set limits. Since January 2026, people whose disability began before age 46 can open one; the 2026 annual contribution limit is $20,000.
- Special needs trusts: Hold money for the person without counting it against benefits. An attorney should set these up.
Your next 3 steps
- Call Social Security at 1-800-772-1213 to schedule the SSI application (and ask about Childhood Disability Benefits).
- Before gifts or inheritances, ask an attorney about a special needs trust and update wills and beneficiary designations.
- Look at ABLEnow to see if an account fits your family.
Official sources
Daily Life, Housing & Respite
A full life is more than paperwork: it’s a place to belong, meaningful work or activity, a home that fits, and rest for the people who care for you. Start by asking what the adult wants a good day to look like — then look for the supports that make it possible.
Key terms
- Employment supports: Virginia’s Department for Aging and Rehabilitative Services (DARS) offers vocational rehabilitation, and waivers can also fund supported employment and day supports.
- Respite: Short breaks for caregivers. Some are funded through waivers; some are offered by nonprofits such as Jill’s House, which runs an adult overnight program for ages 18+.
- Supportive living: Ranges from one’s own apartment with support to shared and provider-run homes. Waiting lists are common, so start conversations early.
- Community connection: Friendship and fun matter for health and confidence — our themed events and Life Skills Courses are built for exactly this.
Your next 3 steps
- Write down 3 things the adult enjoys and 3 skills they’d like to build — bring the list to every meeting.
- Ask your CSB support coordinator about day, employment, and respite options, and about DARS.
- Contact a respite provider now to learn how applying works.
Trusted Northern Virginia Partners
These organizations serve adults with intellectual and developmental disabilities and their families in our area. Listing is not an endorsement or guarantee of services — please contact each one directly to confirm eligibility, cost, and availability.
The Arc of Northern Virginia
Advocacy, information, and family support for people with intellectual and developmental disabilities across Northern Virginia. A good first call when you’re not sure where to start.
BEST FOR: Getting oriented and connected
Fairfax-Falls Church Community Services Board
The local public agency for developmental disability services. Start here for DD Waiver waiting-list questions and support coordination. Intake: 703-324-4400.
BEST FOR: Waiver waiting list & support coordination
ENDependence Center of Northern Virginia
A center for independent living run by and for people with disabilities, offering advocacy, peer support, and independent-living skills such as travel training on public transit.
BEST FOR: Independence skills & peer support
Jill’s House
Respite stays so caregivers can rest while their family member enjoys activities in a safe, caring setting — including an adult overnight program for ages 18+.
BEST FOR: Caregiver rest
We’re here to help
Have a question or a resource to share?
Stuck on a form or a term? Found something that helped your family? Tell us — we read every message and share good resources with other families. Please don’t include diagnoses, Social Security numbers, or other private details.
Educational information only. Great Vibe Events is a 501(c)(3) nonprofit (EIN 93-4241529). The information on this page is general education. It is not legal, medical, tax, or financial advice, and reading it does not create an attorney-client or other professional relationship. Benefits rules, waiting lists, and program names change; always confirm with the official agency and speak with a qualified attorney, benefits counselor, or financial professional about your family’s situation. Links to other organizations are provided for convenience and are not endorsements. See our Privacy Policy.