Intro

It is the question every parent of a child with an intellectual or developmental disability eventually faces. Sometimes it comes in the middle of the night. Sometimes it arrives during a routine doctor's appointment. Sometimes it hits during an ordinary Tuesday when you catch yourself thinking about the future.

What happens to my child when I'm gone?

For most IDD families, there is no clean answer. There is only the weight of knowing that the systems and supports that exist right now are fragile — and that one change in a caregiver's health, finances, or circumstances can unravel everything overnight.

The Scale of the Crisis

More than 7 million Americans have an intellectual or developmental disability. Of those, approximately 85% live with family caregivers — parents, siblings, aunts and uncles — with no formal long-term housing plan in place.

That means the vast majority of adults with IDD are one loss away from a crisis. One parent's illness. One caregiver's death. One family's financial collapse.

And when that crisis comes, the options available are often inadequate, expensive, or years away. The average waiting list for residential support services for adults with IDD in the United States is five to seven years. In some states, it's longer. There are currently over 850,000 adults with IDD on those waiting lists right now.

These are not abstract numbers. These are families.

What the Options Actually Look Like

When a primary caregiver can no longer provide care — whether through death, illness, or age — families with an adult member with IDD typically face one of these scenarios:

• Another family member steps in — often a sibling who may not have chosen this role and may not be equipped for it

• The adult with IDD enters a group home — if space is available, which is rarely guaranteed

• They go on a waiting list — and wait, often in emergency or temporary housing

• They end up in an institutional setting that was never designed for someone with their specific needs

None of these are good options. All of them represent a failure of planning — not by the families, but by the systems that were supposed to be there.

The Planning Gap

Attorney Sean Beck, who specializes in disability and estate planning, shared a striking statistic on Love Without Rest: roughly 72% of families with a member with IDD have not completed the legal planning that would protect their loved one when a transition comes.

No guardianship established. No special needs trust. No letter of intent — the document that tells future caregivers everything they need to know about the person they're caring for.

Most families aren't avoiding this planning because they don't care. They're avoiding it because they're exhausted, because it forces them to think about outcomes they're not ready to face, and because no one has shown them where to start.

"I couldn't find a real answer to that question — what happens to Riley when I'm gone. So I decided to build one." — Michelle Short, Founder, Riley's Residence

Riley's Residence is a permanent housing community being developed in Meridian, Idaho — built specifically for adults with intellectual and developmental disabilities. Not a group home. Not a temporary placement. A real, permanent home in a community designed to support the people who live there for the long term.

The project is currently under contract on land in Meridian. We have been through the city hall process. We are in active due diligence. And we need $3.4 million to close by February 2027.

Every dollar raised goes toward making Riley's Residence a real answer to the question that keeps IDD parents awake at night.

What You Can Do Right Now

Whether or not Riley's Residence directly serves your family, here are concrete steps every IDD family can take today:

• Consult a disability planning attorney to establish or review guardianship and your estate plan

• Write a letter of intent — a document describing your loved one's routines, preferences, medical needs, and personality for future caregivers

• Research your state's Medicaid waiver waitlist and get on it now — waiting lists often take years, so earlier is always better

• Talk to your other children or family members about what future care could look like — while there is still time to plan

• If you're in Idaho: learn about Riley's Residence and consider how you can support the mission

The question of what happens when parents can no longer care for their adult child with IDD deserves a real answer. We're building one. But it takes a community to get there.

🏡 Learn more about Riley's Residence at rileysresidence.org — and consider making a gift toward our Keep The Land campaign as we work toward our February closing.