Mom and Dad Left Money for Your Brother or Sister. No One Told You It Would Be This Hard.
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The 5 Questions Every Sibling Must Answer When Taking Over Care for a Brother or Sister with a Disability
For siblings of adults with developmental disabilities: what to do when your parents are gone and the money they set aside is now in your hands.
Mom and Dad planned ahead.
Maybe it's a special needs trust. A life insurance policy. Retirement savings. Or the family house that now has to be sold. However it came together, they set that money aside for one reason: so your brother or sister would be taken care of after they were gone.
That's a gift. It's also a weight.
Because what they left was money. Not a plan.
The trust paperwork doesn't tell you where your sister will live next year. The insurance check doesn't find staff who show up on a Tuesday morning. The house sale doesn't apply for the waiver, sit on hold with the state, or warn you that money spent the wrong way could put your brother's benefits at risk.
No one told you it would be this hard.
The Two Ways Siblings Get Stuck
When the money lands, most siblings end up in one of two places.
They freeze. The money sits untouched because every decision feels too big, and meanwhile life gets harder for everyone.
Or they start putting out fires. A caregiver here, an emergency there, a rushed housing decision. And money that was meant to last a lifetime starts running out in a few years.
Neither one is a failure. They're what happens when someone is handed a huge responsibility with no roadmap.
The difference between families who are drowning and families who are steady usually isn't how much money Mom and Dad left. It's whether someone helped them turn that money into a real plan.
5 First Steps When Your Brother or Sister's Care Is Now Up to You
1. Slow down before you make big moves.
Unless it's a true emergency, give yourself 30 days before you sell, move, sign, or spend anything significant. Grief and pressure lead to fast decisions, and fast decisions with this money are hard to undo.
2. Find out what your brother or sister already has.
Make a simple list: SSI or SSDI, Medicaid, any waiver services (in Kentucky, that might be the Supports for Community Living waiver or the Michelle P. waiver), day programs, and who the case manager is. You can't plan forward until you know what's already in place.
3. Protect their benefits before money moves.
Programs like SSI and Medicaid have strict rules about money and assets. Money that goes straight to your brother or sister, instead of through a properly set-up trust, can cause real problems. Before anything is paid out, talk with the trustee and an attorney who knows special needs planning.
4. Decide what the money is FOR.
Not just what they need, but what they want. Where do they want to live? Who do they want to see? What makes a good day for them? The money should be working toward that picture, not just paying for whatever crisis comes next.
5. Be honest about what YOU can carry.
Many siblings are caring for a brother or sister, an aging parent, and their own family, all while working. The plan has to work for you too, or it won't last.
What Mom and Dad Really Wanted
They didn't save that money so it could sit in an account. And they didn't save it so you'd burn out trying to manage everything alone.
They wanted your brother or sister to have a good life. And they trusted you to help make that happen.
You don't have to do it by yourself.
How Momentum Helps
We're not money managers. We don't touch the trust; your attorney and financial advisor handle that.
We're the team that helps you turn those resources into a real life for your brother or sister: the right funding, the right services, a care team that actually shows up, and support for you while it all comes together.
Our team has helped Kentucky families access more than $12 million in care.
Where to Start
Start with a Momentum Starter Session. It's a focused, paid working session with our team. We'll look at what Mom and Dad left, what your brother or sister needs, and what has to happen first. You'll leave knowing your next steps, and your Starter Session fee goes toward your next step if you keep working with us.
You don't have to figure this all out today. You just have to take the first step.
About the Author
Samantha Harrison is the founder of Momentum Family Strategies™ and a disability services consultant with 15+ years of experience helping Kentucky families access Medicaid waivers, build self-directed support systems, and recruit caregivers who stay.
Her work centers on one mission: making sure families aren’t forced to navigate complex systems without support.
Too many people are left facing long waitlists, confusing rules, and life-changing decisions without the right support.
Samantha founded Momentum Family Strategies to change that.
Looking for more Life After Mom & Dad Help? Visit our website. Momentumfamilystrategies.com
