Legal planning for adulthood

Age of majority

In most states, the age of majority is 18 — the point at which a person becomes a legal adult with full rights and full responsibility for their own decisions. For families of autistic young adults, several things change automatically on that date:

• Medical decisions and records: HIPAA rights transfer to the individual. Healthcare providers may refuse to share information with parents or accept parental consent for treatment without the patient's explicit authorization or a legal document granting authority.
• Financial accounts: banks may require the account holder's independent signature. Joint accounts or a durable power of attorney can maintain parental access.
• School records: FERPA rights transfer from parents to the student at 18, even if they're still in high school.
• IDEA procedural safeguards: rights under IDEA (including consent for IEP decisions) transfer to the student at the age of majority — which in some states is earlier than 18.

These changes happen whether or not any legal planning has occurred. The question is which tools your family puts in place to manage them.

Alternatives to guardianship

Full guardianship — a court order transferring decision-making authority to a guardian — is often the default assumption. It is rarely the only appropriate option. Alternatives that preserve more of the individual's autonomy:

• Supported Decision-Making Agreement (SDMA): a written agreement in which the person chooses supporters who help them understand information and make decisions. The person retains full legal rights. In most states, an SDMA does not require court involvement. See supporteddecisionmaking.org for state-specific guidance.
• Durable Power of Attorney (financial): a legal document designating someone to manage financial matters. Requires the person to have capacity to sign at the time of signing. No court involvement.
• Healthcare Proxy / Medical Power of Attorney: designates someone to make medical decisions if the person is unable to. Also signed by the person themselves — no court required.
• SSA Representative Payee: if the person receives SSI, SSA can designate a representative payee to manage those funds. No court process — SSA administers it. This handles SSI payments only, not broader finances.

Many families find that an SDMA combined with a durable power of attorney and healthcare proxy provides everything they need — without the court process, ongoing reporting requirements, or loss of rights that come with guardianship.

Guardianship

Full guardianship is a court order that transfers some or all decision-making authority from an individual to a guardian (typically a parent). The court must find that the person lacks capacity to make decisions in the relevant areas. Guardianship types include:

• Full guardianship: covers all personal and financial decisions.
• Limited guardianship: covers specified areas only — for example, medical decisions but not finances.
• Guardianship of the estate: financial decisions only (sometimes called conservatorship).

Guardianship involves an ongoing legal relationship: the guardian must file periodic reports with the court, can be held legally liable for decisions, and the court retains oversight. Establishing guardianship requires filing a petition, a hearing, and — in most states — an attorney.

Consider guardianship carefully. It permanently removes legal rights from the individual in the covered areas. Less restrictive alternatives should be genuinely explored first. An attorney who specializes in disability and elder law can advise on what's appropriate for your specific situation and state.

Special needs trusts

A special needs trust (SNT) holds assets for a person with a disability without those assets counting toward the resource limits that affect SSI and Medicaid eligibility. Without an SNT, leaving money directly to a person on SSI may cause them to lose benefits the month the inheritance arrives.

Two main types:

• Third-party SNT: funded by parents, grandparents, or others — not the person's own money. No Medicaid payback requirement at death. The most common tool for estate planning by parents of a person with a disability.
• First-party SNT (self-settled): funded with the person's own assets (personal injury settlements, inheritance received before the trust was established). Requires a Medicaid payback provision — remaining funds go to Medicaid at the person's death.

Pooled trusts are administered by nonprofits and pool assets from multiple beneficiaries for investment purposes, while maintaining separate accounts. They are often more accessible for smaller amounts and don't require the same setup cost as a standalone trust.

Drafting an SNT is not a DIY task — the rules are technical and a mistake can invalidate the trust or jeopardize benefits. Find a special needs attorney through the Special Needs Alliance. Update any existing wills, life insurance beneficiary designations, and retirement account beneficiaries to direct assets to the trust rather than directly to your child.