Estate Planning Strategies for Utah Families With Special Needs Children

Raising a child with special needs brings a kind of love that is fierce, tireless, and deeply focused on the future. For families in Bountiful and across Utah, one of the most meaningful things you can do for that future is build an estate plan that protects your child long after you are no longer able to do so yourself.

Estate planning for families with children with special needs is not the same as standard estate planning. The wrong approach can unintentionally disqualify your child from certain means-tested government benefits they depend on. The right approach gives your child stability, financial security, and a clear plan for their care.

Why Standard Wills and Trusts Fall Short

Leaving assets directly to a child with special needs through a standard will can eliminate their eligibility for Medicaid and SSI benefits.

Many parents assume that leaving money directly to their child in a will is the simplest solution. For a child with special needs, this can cause real harm. Programs like Supplemental Security Income (SSI) and certain Medicaid programs have strict asset limits. SSI recipients have a $2,000 limit for individuals.

If your child inherits money or assets outright, those resources can push them over the eligibility threshold. This means a loss of benefits at exactly the moment your child needs that support most. A properly coordinated estate plan can help reduce the risk that an inheritance will disrupt means-tested benefits.

The Special Needs Trust: A Core Planning Tool

A special needs trust lets families leave assets to a child without disqualifying the child from SSI, Medicaid, or other needs-based government programs.

A Special Needs Trust (SNT), sometimes called a Supplemental Needs Trust, is a legal arrangement that holds assets for the benefit of a person with a disability. Assets in a properly drafted and administered special-needs trust may be excluded from the beneficiary’s countable resources for SSI and certain Medicaid programs, depending on trust structure, funding, and distribution rules.

In Utah, Special Needs Trusts are subject to federal law, such as 42 U.S.C. § 1396p(d)(4)(A), as well as the Utah Uniform Trust Code under Utah Code Title 75B. While families often utilize two primary trust types—or opt for a pooled trust managed by a nonprofit—the two main individual options are:

• Third-Party Special Needs Trust: Created and funded by a parent, grandparent, or other family member. Assets in this trust do not need to be paid back to the state upon the beneficiary’s death.
• First-Party Special Needs Trust: Funded with the beneficiary’s own assets, such as an inheritance received directly or a personal injury settlement. Utah law, consistent with federal requirements, mandates a Medicaid payback provision in these trusts.

Choosing the right type depends on where the assets are coming from and how your broader estate plan is structured. Trustees must exercise care with distributions: direct cash payments or distributions used for food and shelter can impact SSI benefits.

ABLE Accounts: A Flexible Supplement

Utah ABLE accounts let individuals with qualifying disabilities save money without affecting SSI or Medicaid eligibility, up to annual contribution limits.

Utah’s ABLE program, established under Utah Code Section 35A-12-201 and consistent with the federal Achieving a Better Life Experience Act, allows individuals with disabilities whose disabilities began before age 46, for tax years beginning after December 31, 2025, to open a tax-advantaged savings account. Under current federal guidelines, contributions from all sources are capped at $20,000 per year, and the account balance limit before SSI suspension is $100,000, though Medicaid coverage generally continues.

ABLE accounts are not a replacement for a Special Needs Trust, but they work well alongside one. Your child can use ABLE account funds for qualified disability expenses such as education, housing, transportation, and assistive technology, though housing distributions must be managed carefully to avoid SSI implications. The flexibility of an ABLE account makes it a useful tool for day-to-day and near-term needs, while the Special Needs Trust handles long-term security.

Guardianship and Supported Decision-Making in Utah

When a child with special needs turns 18, parents no longer have automatic legal authority to make decisions on their behalf without formal legal arrangements such as powers of attorney, healthcare directives, representative payee designations, or guardianship.

This surprises many families. Once your child reaches adulthood, you may need legal authority to make medical, financial, or personal decisions for them. Utah offers several paths depending on your child’s level of independence:

• Full Guardianship: The court appoints a guardian with comprehensive authority over personal decisions under Utah Code Title 75, Chapter 5, though Utah law encourages tailoring authority to the individual’s specific needs.
• Limited Guardianship: Authority is tailored to specific areas of need, preserving as much of your child’s autonomy as possible.
• Supported Decision-Making Agreements: A less restrictive option under Utah law that allows your child to make their own decisions with the support of trusted individuals, without transferring legal authority.

Planning for the transition to adulthood should begin well before your child turns 18. The process takes time, and the courts in Davis County typically handle adult guardianship petitions for Bountiful residents, so understanding local filing procedures matters.

Naming the Right Trustee and Successor Trustee

The person you name as trustee of a Special Needs Trust carries enormous responsibility. They will manage funds, coordinate with benefit programs, and advocate for your child’s quality of life. Choose someone who understands both the financial duties and the personal relationship involved.

If no family member is in a position to serve, professional or corporate trustees are an option. You should also name a successor trustee in case your first choice is unable to serve.

Letter of Intent: The Document No One Talks About Enough

A Letter of Intent is not a legal document, but it may be one of the most valuable things you write. It tells future caregivers, trustees, and guardians who your child is: their routines, preferences, medical history, communication style, and what brings them joy. No statute requires it, but families who create one give future caregivers a foundation that legal documents alone cannot provide.

Able & Strong Law, Inc. Is Here to Help

At Able & Strong Law, Inc., we understand that this kind of planning is deeply personal. Families in Bountiful and throughout Utah can reach our team at (801) 683-9143 or contact us to schedule a time to talk through your family’s needs and goals. We are ready to help you build a plan that reflects how much you love your child.

Last updated: August 2026