Preparing siblings through transparency

Keith recommends financial transparency and early conversations so siblings can choose or prepare for caregiving roles.

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#709: Keith Wargo has spent decades navigating one of the most daunting financial planning challenges a family can face: raising a child with a developmental disability. He joins us to share what families need to know.

The financial stakes are significant. Keith, who is the CEO of Autism Speaks, estimates lifetime care costs for a person with a developmental disability can run between $1.4 and $2.4 million - and that figure may be conservative.

Yet many families put off financial planning because the day-to-day demands of caregiving leave little room for anything else.

One of the first things Keith walks us through is the federal benefits system. Medicaid and SSI are the primary lifelines for many families, but qualifying takes time - for Keith's family, it took three years of meetings and paperwork.

There's also a critical detail: SSI requires the individual to have no more than $2,000 in assets in their name. A well-intentioned inheritance from a grandparent can wipe out eligibility overnight.

That's why Keith recommends a special needs trust for most families. Assets held in the trust don't count against federal benefit limits. He also recommends pairing the trust with a "second to die" life insurance policy - one that pays out after both parents are gone - to help fund it.

ABLE accounts round out the toolkit. Similar to a 529 plan, they allow tax-free contributions of up to $20,000 per year for a person with a qualifying disability. The funds cover everyday expenses like food, transportation, and entertainment.

Unused 529 funds can also be rolled into an ABLE account, up to $20,000 per year.

Keith also addresses trustee succession - who manages the money after the parents are gone, and who steps in after that person.

His advice: start building a network early, revisit the plan every few years, and bring siblings into the financial conversation sooner than feels necessary.

Timestamps:

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(00:00) The Financial Reality of Developmental Disabilities

(02:00) Caregiving's financial toll on families

(03:41) Keith's background

(04:26) His son AJ's diagnosis and journey

(07:08) Rights and services end at age 22

(08:06) Medicaid, SSI, and SSDI explained

(14:12) The $2,000 asset limit for SSI eligibility

(14:33) Why special needs trusts matter

(16:04) Life insurance as a funding tool

(23:08) Planning two retirements simultaneously

(25:04) ABLE accounts - the basics

(27:06) ABLE account balance limits by state