Planning for Tomorrow: Legal & Financial Steps for Your Autistic Loved One

Special Needs Trust (SNT)

• What it is: A Special Needs Trust is a powerful legal arrangement. It allows money or other assets to be held for the benefit of an individual with a disability without disqualifying them from “means-tested” government benefits (benefits based on income and assets). Think of it as a protective bubble for their financial future.
• Why it’s important: This is a critical tool for ensuring your loved one can inherit money or receive gifts without losing access to essential programs like SSI or Medicaid. Funds in an SNT can pay for things that government benefits don’t cover, such as enrichment activities, personal care items, or certain therapies that significantly enhance their quality of life. It provides supplemental support without disrupting their vital public assistance eligibility.

• How to get started:

  • Consult a Special Needs Attorney: This is a complex area of law, and getting expert advice is crucial. Search for “special needs attorney [your city/state]” or “estate planning attorney disability [your city/state].” Look specifically for those specializing in disability law.
  • Share Your Goals: Be open and clearly communicate your financial situation and your loved one’s specific needs and aspirations to the attorney.

Guardianship vs. Supported Decision-Making (SDM)

• What they are: As your loved one approaches adulthood (typically age 18), they are legally presumed to be competent to make their own decisions. This means you’ll need to carefully consider legal options for decision-making support if they are not ready for this.
  • Guardianship: This is a legal process where a court appoints a person (the guardian) to make decisions for an individual (the ward) who is legally determined unable to make decisions for themselves. This can be full guardianship (for all decisions) or limited (for specific areas). 
  • Supported Decision-Making (SDM): This is an empowering alternative to guardianship. With SDM, individuals with disabilities receive support from trusted advisors (family, friends, professionals) to understand choices, make decisions, and communicate them to others. The individual retains their legal rights and autonomy however.
  • Why it’s important: Choosing the right path ensures your loved one’s decisions are made responsibly and in their best interest, whether by them with support or by an appointed guardian. This framework safeguards their choices and well-being as adults.

•  How to decide and act:

  • Research Both Options: Search for “guardianship vs supported decision making autism [your state]” to understand the legal frameworks and nuances in your area.
  • Assess Capabilities (Compassionately): Honestly and compassionately evaluate your loved one’s ability to understand and make decisions, even with support. If possible, involve them in this important discussion.
  • Consult an Attorney: A special needs attorney can help you determine the most appropriate path that best balances autonomy and support for your child, and will help guide you through the legal process.

 ABLE Accounts (Achieving a Better Life Experience)

• What they are: ABLE accounts are tax-advantaged savings accounts specifically designed for individuals with disabilities. The magic of an ABLE account is that funds saved in it do not count against asset limits for many government benefits (like SSI and Medicaid), up to a certain amount. Money saved can be used for “qualified disability expenses,” which are broadly defined to include housing, transportation, education, health, employment training, assistive technology, and much more.
• Why it’s important: It provides a flexible and secure way for individuals with disabilities and their families to save money for future needs (like a car, an apartment, or just supplemental living costs) without jeopardizing their essential benefit eligibility.

•  How to open one:

  • Check Eligibility: The individual must have developed a qualifying disability before age 26 (this age limit may increase in the future, so always check current rules).
  • Research State Programs: Most states have their own ABLE programs.  Search for “ABLE accounts [your state]” or similar wording to find out which program you can enroll in. You don’t always have to enroll in your own state’s program; you can choose any state’s program that accepts out-of-state
    residents as well.

Life Insurance

• What it is: A contract where an insurance policyholder pays regular amounts, and the insurer promises to pay a designated beneficiary a sum of money upon the death of the insured person.
• Why it’s important (for parents): For parents, life insurance can be a crucial tool to ensure financial security for your loved one’s ongoing care needs after you are gone. The payout can be strategically directed into a Special Needs Trust to provide for their future without affecting their benefits eligibility.

• How to get started:

  • Consult a Special Needs Financial Planner: Seek a financial advisor who specializes specifically in special needs planning. Search for “financial planner special needs [your city/state]” or something similar.
  • Discuss Your Goals: Clearly explain your desire to provide for your loved one’s long-term care and how life insurance can play a vital role in funding their Special Needs Trust.
  • Review Annually: Make it a habit to review your policy annually to ensure it aligns with your loved one’s growing needs and any changes in your financial situation.