Families of individuals with autism face unique challenges when planning. From securing government benefits to establishing financial safeguards, careful legal and financial planning is essential to ensuring that a loved one’s long-term well-being.

Whether a child is newly diagnosed or an adult-dependent requires ongoing care, special needs planning helps families create a structured, secure future.

Why Special Needs Planning Matters

Many individuals with autism require financial, medical and personal support throughout their lives. However, without proper planning, their ability to receive benefits like Medicaid, Supplemental Security Income (SSI) and housing assistance may be at risk.

Key goals of special needs planning include:

• Preserving eligibility for government benefits, while providing additional financial support
• Designating a trusted individual to manage financial and legal affairs
• Ensuring lifelong care through structured financial planning and housing solutions

Families who take proactive steps can avoid legal and financial roadblocks, while ensuring their loved one is well-supported.

Establishing a Special Needs Trust (SNT)

A Special Needs Trust (SNT) is a critical tool for providing financial security without disqualifying a loved one from government assistance.

How a Special Needs Trust Works

A special needs trust fulfills many important functions for those with disabilities. An individual with autism can keep assets in an SNT without losing eligibility for Medicaid and SSI, for instance. Resources can cover expenses that benefits don’t include, such as education, therapy and recreation. A third-party trustee manages the assets and uses funds appropriately to serve the beneficiary’s best interests.

Types of Special Needs Trusts

• First-Party SNT – Funded with the beneficiary’s own assets (such as an inheritance or legal settlement) and must follow Medicaid payback rules.
• Third-Party SNT – Created by parents or relatives, funded with family assets and does not require Medicaid repayment.
• Pooled SNT – Managed by nonprofit organizations and allows multiple beneficiaries to combine resources for financial management.

Setting up a properly structured trust ensures that a loved one has access to financial resources while avoiding unintended consequences.

Guardianship and Decision-Making Support

Once an individual with autism reaches adulthood, families may need legal authority to continue making medical and financial decisions.

There are three main options to provide decision-making support to a loved one with special needs. The first is guardianship, which grants a designated person full authority over healthcare, finances and living arrangements.

A less intrusive option is the Power of Attorney (POA). A chosen individual with the POA can manage financial or medical decisions, while maintaining the individual’s independence. Lastly, you can consider Supported Decision-Making Agreements (SDMAs). These are less restrictive options that provide guidance without removing autonomy.

Each family’s situation is different, and legal guidance can help determine the best solution based on the individual's capabilities and needs.

Securing Long-Term Care and Housing

Housing and care planning are essential for individuals with autism who require lifelong support. Options include:

• Group homes or assisted living communities for individuals who need structured support
• Independent living programs with in-home assistance for those who can manage daily activities with minimal help
• Family-funded housing that allows a loved one to live independently with caregiver support

Medicaid waivers and state-funded disability programs help cover housing and in-home care costs. However, these programs often have long waiting lists, so families should apply well in advance.

Employment and Financial Planning

Many individuals with autism are capable of meaningful employment, and families should explore the following:

• Vocational training programs that prepare individuals for jobs suited to their abilities
• Employment support services that offer workplace accommodations
• ABLE Accounts, which allow individuals with disabilities to save money tax-free, while remaining eligible for benefits

Balancing employment income with continued access to government assistance ensures financial stability.

Secure Your Loved One’s Future with Special Needs Planning

Navigating financial, legal and care planning for a loved one with autism can be complex.  However, proper preparation ensures long-term security and peace of mind. Whether setting up a Special Needs Trust, exploring guardianship options, or planning for long-term care, our law firm provides comprehensive special needs planning services.

Key Takeaways

• A Special Needs Trust protects benefits: Without an SNT, direct financial gifts or inheritance could disqualify an individual from Medicaid or SSI.
• Guardianship and decision-making plans ensure support: Families should establish legal authority for medical and financial matters before a loved one turns 18.
• Housing options require early planning: Medicaid-funded programs often have long waiting lists, so securing housing early is essential.
• Employment support promotes independence: Vocational training and ABLE accounts allow individuals with autism to earn income while maintaining benefits.
• Proactive legal and financial planning prevents future obstacles: Families that plan early ensure that their loved ones receive lifelong support without unnecessary legal complications.

References: Autism Speaks “World Autism Awareness Day,” Academy of Florida Elder Law Attorneys (April 17, 2024) “Special Needs Planning Ideas to Consider When a Loved One Has Autism,” and Special Needs Alliance “Special Needs Planning: Ensuring a Smooth Transition”