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Fear of losing disability benefits can sometimes be as much of a barrier to opportunity as the rules themselves.
Even sophisticated families can find the system difficult to navigate. SSI, SSDI, and Medicaid operate under different rules, and a decision affecting one benefit does not necessarily affect another.
When I work with families who have a loved one with a disability, we are often planning for two financial futures: the parents’ retirement and their child’s long-term security and independence.
Recently, a family I work with received a notice reducing their child’s SSI after a special needs trust paid some expenses. The determination appeared to apply an outdated rule to food expenses. As of 2024, Social Security no longer counts food as in-kind support and maintenance when calculating SSI. Shelter remains subject to separate rules.
That distinction can mean the difference between accepting a determination and questioning it.
Know Which Benefits You’re Protecting
Before helping a family evaluate a benefits question, we sometimes have to establish which program their loved one receives.
Parents often tell me their child “gets Social Security” without knowing whether that means SSDI or SSI. The programs have different eligibility requirements and work rules.
You can’t manage a risk you can’t name.
SSDI includes a trial work period that can allow someone to test their ability to work while continuing to receive benefits. SSI operates differently. Earned income generally reduces SSI gradually rather than dollar for dollar, and other work incentives may reduce the income Social Security counts.
Working More Doesn’t Necessarily Mean Losing Benefits
Some of the biggest fears I hear involve a son taking more hours, a daughter getting a raise, or an SSI payment shrinking. Most importantly: What happens to Medicaid?
For certain SSI recipients, losing the SSI cash payment because of earnings does not necessarily mean losing Medicaid. Section 1619(b) can allow Medicaid coverage to continue when earnings become too high for an SSI cash payment, provided the individual meets the applicable requirements.
That matters because Medicaid may provide healthcare and support services that are worth more to the long-term plan than the SSI payment itself.
So I encourage families to change the question from “How much can my child earn before losing SSI?” to “If my child earns more, what actually changes?”
Qualifying impairment-related work expenses may also reduce the earnings Social Security counts.
The calculation should not stop with dollars. Work can provide income, purpose, relationships, routine, and greater independence. If a loved one is thriving at work and critical health coverage can remain intact, an SSI reduction may not represent a setback. It may represent progress.
Planning for Two Financial Futures
For parents, employment decisions do not exist in isolation.
A family may also be deciding when they can retire, how much to leave for their child, whether assets should pass through a special needs trust, how an ABLE account fits into the plan, and how much lifetime support their child may need.
Greater financial independence may reduce some future support needs. If employment is not sustainable, the family’s plan needs flexibility to provide additional support without disrupting means-tested benefits.
The expansion of ABLE eligibility in 2026 adds another tool. Individuals whose disability began before age 46 may now qualify, up from the previous onset threshold of age 26.
That is why special needs planning cannot simply be reduced to preserving SSI or Medicaid. The better question is: How do we coordinate earnings, government benefits, family assets, trusts, and ABLE accounts to create the best possible life for this individual?
No Family Should Navigate This Alone
Navigating these systems can require significant advocacy. Families may need medical records, prior determinations, and the agency’s own rules when a disagreement turns into an appeal.
I learned the value of community in my own family. When my son was born with a bilateral cleft palate, my wife found a group for parents of children with the same condition. Within a day, those parents were sharing feeding techniques, bottle types, and what had worked for them.
Special needs planning operates on a similar principle.
No single professional should try to solve every part of a special needs plan. My role is to understand how the pieces interact and help coordinate with benefits specialists, attorneys, employment professionals, and others the family needs.
For too long, special needs planning has sometimes been framed around preservation: Protect the benefits, protect the assets, and do not make a mistake.
Those things matter. But preservation should not become limitation.
If working allows someone to earn money, build relationships, develop skills, and experience greater independence, we should not assume the answer is to refrain from doing so simply because a benefit might change. We should first understand what might change and then help that individual pursue as much opportunity and independence as possible.
Andrew Jaffee is a wealth management advisor with Apollon Wealth Management, LLC. The firm provides advice and makes recommendations based on the specific needs and circumstances of each client.
The information contained herein is intended for information purposes only and should not be considered investment advice. Please contact your financial advisor with questions about your specific needs and circumstances. Visit Apollon’s website http://apollonwealthmanagement.com for other important disclosures.
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Advisor Perspectives welcomes guest contributions. The views presented here do not necessarily represent those of Advisor Perspectives.