Navigating Parenthood as a Rare Mom - Expert Insights into Special Needs Financial Planning with Mary McDirmid from Special Abilities Network

Once Upon A Gene

ONCE UPON A GENE - EPISODE 199

Navigating as a Rare Mom - Expert Insights into Special Needs Financial Planning with Mary McDirmid from Special Abilities Network

Mary McDirmid is a rare mom and Chief Inclusion Officer at Special Abilities Network. She has a passion for advocating for families like ours— families with children who have disabilities and rare diseases. She's here to talk us through the uncomfortable topic of financial and future planning for our rare families.

EPISODE HIGHLIGHTS

How do parents approach planning for their children's future when things feel so uncertain?

If you don't have the capacity to think about it, the first thing to do is to figure out what you can do to create space and capacity. Triage anything that's causing a lot of stress so you can move from caregiver mode to parent mode.

What's the importance of planning when you have a child with disabilities or rare disease?

The importance is that if a child is on any type of state or federal benefit, we want to ensure they keep those benefits. When they turn 18, they're legally an adult and they can only have a certain amount of assets in their name. There's only a couple places we can put money to help them save and not have funds count against their asset limits. It's important to also be able to supplement financial care when you're no longer around. The importance is keeping your child benefit-eligible and to ensure your child is cared for.

What is your advice for parents who don't have the financial resources to save for their child's future?

Apply for state benefits and leverage those resources to find funds. Think about other resources such as family members who can contribute. Examine how your family is spending money and reflect on your personal spending habits to see if there's somewhere to save.

How can families advocate for change around policy and providing better care for our kids?

If you're up for the fight, you have the time, and you have the capacity, think about what you want to achieve, be clear in your ask and be prepared to follow up. If you're considering taking something on, ask yourself if the project benefits from your special skill or expertise, if it serves the community you represent, and what / who you want to be held accountable to.

LINKS & RESOURCES MENTIONED

Dante Labs

https://us.dantelabs.com/

Special Abilities Network

https://specialabilitiesnetwork.com/

TSC Alliance

https://www.tscalliance.org/

State Disability Resource Guides

https://truenorthdisabilityplanning.com/idd-roadmaps

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