Caring for a loved one with a disability changes everything. It dictates daily routines. It completely alters long-term finances. Most importantly, it creates anxiety.

If you have a loved one with a disability, you might keep yourself up at night asking yourself, “What happens to them when I’m no longer here to care for them?”

We recently had Mary Anne Ehlert, Certified Financial Planner and Founder of Protected Tomorrows, on the March to a Million podcast to answer that exact question. Mary Anne Ehlert cares for her own children with special needs and described the moment it crystallized for her: “You have to know all this stuff, and there’s no reasonable expectation that you would know it. Why would you know it?”

She is right. You would not. And most of the professionals’ families turn to for help don’t know much about special needs planning either.

How Special Needs Planning Works in Ohio

Here are the top 3 things that matter for Ohio families navigating special needs planning:

1. A standard will can accidentally eliminate a disabled loved one’s government benefits
2. A special needs trust and an ABLE account serve different purposes, and both are usually needed
3. The caregivers themselves need a financial plan, not just the person with the disability

In this article, we’ll cover the practical structure behind each of these, where planning gaps exist, and what you can do about them.

Why a Standard Estate Plan is Not Enough for Families with a Disabled Loved One

Most estate plans are built around a straightforward goal: leave your assets to the people you love.

When one of those people has a disability and receives government benefits, that straightforward goal becomes a serious problem.

A person receiving Supplemental Security Income or Medicaid cannot hold more than $2,000 in countable assets. If they inherit money, property, or even personal items worth more than that threshold, they can lose their benefits, sometimes immediately.

This is not a theoretical risk. It shows up in ordinary will language all the time. A standard clause that distributes assets equally among children can trigger a Medicaid loss in the same week the estate is settled. As Mary Anne Ehlert mentions in the podcast, one family lost $900 a month in Medicaid coverage because their child inherited silverware.

A properly structured and funded Special Needs Trust can help prevent that from happening.

What a Special Needs Trust Actually Does and Why The Structure Matters

A special needs trust is a legal document that holds assets for a person with a disability without those assets counting toward benefit eligibility.

Done correctly, it allows family members, grandparents, and others to contribute to the trust without affecting the beneficiary’s government support. The trust can pay for supplemental care, therapy, recreation, and other expenses that improve quality of life beyond what government programs cover.

Here is what many families and attorneys do not realize: the trust needs to be a standalone document, set up and ready to receive contributions during the parent’s lifetime, not a testamentary trust that only activates at death.

The reason matters. If a grandparent wants to leave something to a grandchild with a disability, and the only trust in place is written into a parent’s will, that grandparent has nowhere to direct those assets while the parents are still alive. The trust needs to exist and be funded as a separate, irrevocable grantor trust from the start.

What a Special Needs Trust Can and Cannot Pay For

A special needs trust can pay for:

• Therapies not covered by Medicaid
• Recreation and travel
• Personal electronics and adaptive equipment
• Education beyond public programs

A special needs trust cannot pay for:

• Rent or basic housing costs
• Food and basic groceries
• Cash directly to the beneficiary
• Anything considered basic support

This is where most families run into trouble. The trust has real limitations by design, and one of the biggest gaps is housing.

How ABLE Accounts Fill the Gap Special Needs Trusts Cannot

The ABLE account changed what is possible for families managing disability planning.

Think of it like a 529 college savings account but built specifically for people with disabilities. It is a tax-free savings vehicle administered by the federal government and states that can cover disability-related expenses, including rent.

That matters because the special needs trust legally cannot pay for basic housing support. The ABLE account can.

Here is how the two tools work together in practice. A parent contributes to their child’s ABLE account. The child uses that account to cover the gap between their disability check and their actual housing costs. The special needs trust covers everything supplemental beyond that.

The critical detail: when the parent dies, someone needs to keep funding the ABLE account. That responsibility must be built into the special needs trust language before it is needed. The trust document needs to authorize the trustee to make annual contributions to the ABLE account. Without that specific language, the coordination breaks down at exactly the wrong moment.

This is a detail that most estate attorneys have never addressed. It is also a detail that changes the entire financial picture for a family.

Why Caregivers Need Their Own Financial Plan

Most families walk into a disability planning meeting wanting to talk about their loved one.

That is understandable. But it can also be the thing that leaves everyone more vulnerable.

The caregivers, the parents, siblings, and spouses are the most important people in the disabled person’s life. If their retirement falls apart, if their health is not accounted for, if they have never planned for their own longevity, the support system around their loved one starts to crack.

A complete disability plan includes a retirement projection for the caregivers that accounts for the long-term cost of supporting a disabled family member. That number needs to feed directly into the savings and retirement planning.

Many of the families Mary Anne works with have never taken a vacation because they could not figure out how to manage their loved one’s needs while they were gone. Real planning opens that door. It creates space that was not there before.

Documentation That Goes Beyond Legal and Financial Planning

There is one more gap that legal and financial planning cannot close on their own.

It is the daily knowledge that only a caregiver carries.

What materials bother your loved one? What routes are safe for them to walk? What foods do they prefer? What friends actually support them versus take advantage? What does a good day look like, and what are the warning signs of a bad one?

When the primary caregiver is gone and someone new steps in, that knowledge disappears unless it was written down.

Protected Tomorrows built a platform called My Special Life specifically to help families document this information in a structured, shareable way. It is not a legal document. It is the human layer of the plan, and for many families, it is the most important part.

Contact Our Ohio Special Needs Planning Team

If your family includes a loved one with a disability, or you work with families who do, the right plan looks different from a standard estate plan in ways that matter enormously. The team at DuPont Law Group works with families to build financial and legal structures that actually hold up in real life. Reach out to us to start that conversation.