Celebrating Disability Pride Month: Estate Planning That Honors Every Body

July is Disability Pride Month, a time to celebrate the identities, contributions, and history of people with disabilities. It commemorates the signing of the Americans with Disabilities Act in July 1990, and it invites all of us to think about what true inclusion looks like: not just in public spaces and workplaces, but in the deeply personal work of planning for the future.

At Mertzenich Law, we believe estate planning is one of the most powerful tools of self-determination available. For disabled individuals, and for families who love and support a disabled relative, a thoughtful estate plan is more than paperwork. It is a declaration that your life, your wishes, and your community matter and that they will be honored no matter what the future holds.

Estate Planning for Disabled Individuals: Your Plan, Your Voice

Too often, conversations about disability and estate planning focus only on what family members should do for a disabled person. We want to start somewhere different: with disabled adults planning for themselves.

If you are an adult with a disability, you have the same rights as anyone else to decide who inherits your property, who speaks for you if you cannot speak for yourself, and who is welcome at your bedside. A well-crafted plan typically includes:

A will or revocable living trust. These documents direct where your assets go and who administers them. Without one, Wisconsin and Illinois intestacy laws decide for you — and those default rules may not reflect your actual relationships, especially if the people closest to you are a partner, friends, or chosen family rather than blood relatives.

Financial and healthcare powers of attorney. These let you name a trusted person to handle finances or make medical decisions if you are ever unable to do so. For many disabled adults, these documents are also a shield against unnecessary guardianship. Courts in both Wisconsin and Illinois generally prefer less restrictive alternatives to guardianship, and having your own powers of attorney in place demonstrates that you have already chosen who will support you and how.

Supported decision-making. Wisconsin formally recognizes supported decision-making agreements, which allow you to designate supporters who help you understand and communicate decisions while you retain full legal authority over your own life. Even where the framework differs, the principle is the same: support should never mean surrender of autonomy.

ABLE accounts. If your disability began before the qualifying age, an ABLE account lets you save and invest your own money (including earnings and gifts) without jeopardizing means-tested benefits like Supplemental Security Income (SSI) and Medicaid, up to certain limits.

First-party special needs trusts. If you receive a personal injury settlement, an inheritance, or accumulate assets that would otherwise disqualify you from public benefits, a first-party (self-settled) special needs trust can hold those funds for your benefit while preserving eligibility. These trusts have specific requirements, including a Medicaid payback provision, so they should be drafted with care by an attorney familiar with both federal rules and state administration.

Planning for a Disabled Loved One: Providing Without Disqualifying

Many of our clients are parents, siblings, grandparents, or partners of someone with a disability. Their most common fear is this: "If I leave money directly to my loved one, will it cost them their benefits?"

It is a legitimate concern. SSI and Medicaid have strict asset limits, and a direct inheritance--even a modest one--can interrupt or terminate eligibility. But the answer is never to disinherit your loved one. The answer is to plan.

Third-party special needs trusts. A third-party special needs trust (sometimes called a supplemental needs trust) holds assets you leave for your loved one's benefit without those assets counting against them. The trustee can pay for things public benefits do not cover such as therapies, technology, travel, education, companionship, quality of life while government programs continue to cover core needs. Unlike first-party trusts, third-party trusts generally do not require a Medicaid payback, meaning remaining funds can pass to other family members or charities you choose.

Coordinating the whole family's plan. A special needs trust only works if assets actually flow into it. That means reviewing beneficiary designations on retirement accounts and life insurance, and making sure grandparents and other relatives who want to leave gifts direct them to the trust rather than to the individual. One well-meaning but uncoordinated gift can undo years of careful planning.

Letters of intent. While not legally binding, a letter of intent is one of the most valuable documents a caregiver can write. It captures the daily routines, medical history, preferences, fears, joys, and hopes that no trust document can convey. It provides a roadmap for future caregivers and trustees.

Guardianship and its alternatives. If your loved one is approaching adulthood, we can help you evaluate whether guardianship is truly necessary or whether powers of attorney, supported decision-making, or a more limited arrangement would better preserve their independence.

For Our LGBTQIA+ Community: Planning Is Protection

Our firm proudly serves the LGBTQIA+ community across Wisconsin and Illinois, and we would be remiss not to note how much these two conversations overlap. Disability Pride and LGBTQIA+ Pride share a common heartbeat: the insistence that every person deserves dignity, autonomy, and the freedom to define family on their own terms.

For LGBTQIA+ individuals, disabled or not, estate planning carries particular urgency:

Chosen family is not legal family by default. If you are unmarried, intestacy laws will pass your estate to biological relatives, even ones who are estranged or unaccepting, while leaving a life partner or chosen family with nothing. Wills, trusts, and beneficiary designations put your actual loved ones first.

Healthcare documents keep the right people in the room. Healthcare powers of attorney, HIPAA authorizations, and hospital visitation designations ensure that your partner or chosen family can be present, informed, and empowered during a medical crisis — rather than sidelined in favor of next of kin they may never have met.

Documents can affirm who you are. Thoughtful drafting can ensure your correct name and pronouns are used throughout your plan, and can include guidance about your wishes regarding remains, memorials, and how you are remembered.

For LGBTQIA+ individuals who are also disabled, or who are caring for a disabled partner or child, these strategies work together. Special needs trusts, powers of attorney, and careful beneficiary planning can all be built around your family as it actually exists.

Pride in Planning

Disability Pride Month reminds us that disability is a natural part of human diversity, not something to be hidden or planned around apologetically. The best estate plans reflect that truth. They are built with disabled individuals, not merely about them. They protect benefits without sacrificing dignity. And they make sure that you and the people you love are cared for exactly as you intend.

Whether you are a disabled adult ready to put your own plan in place, a parent thinking ahead for a child with special needs, or a member of the LGBTQIA+ community who wants your chosen family protected, the Law Office of Andrew J. Mertzenich is here to help. Based in Rockford, Illinois, with offices in both Winnebago and Boone Counties, we are licensed in Illinois and Wisconsin and proudly serve clients throughout the stateline area and beyond.

Contact the Law Office of Andrew J. Mertzenich today at (815) 420-8261 or visit us at www.mertzenichlaw.com to schedule a consultation — and happy Disability Pride Month.

This blog post is provided for general informational purposes only and does not constitute legal advice. Reading this post does not create an attorney-client relationship. Estate planning and public benefits rules are complex and fact-specific; please consult a licensed attorney about your individual circumstances.