5 Things You Need to Know About Special Needs Planning

Planning for individuals with disabilities is critical to ensure they are financially secure, legally protected, and able to live fulfilling lives, even after caregivers are gone. Attorneys who focus on special needs law can help families navigate the intersection of public benefits, estate planning, tax, legal advocacy, and long-term care. Read below to learn what you should know.

1. Traditional Inheritance Can Harm Benefits
Leaving money (even small amounts) directly to a loved one with a disability, even with the best of intentions, can jeopardize their eligibility for essential public benefits like Supplemental Security Income (SSI), Medicaid, and housing assistance. Careful legal planning is necessary to preserve access to these critical supports, as direct inheritance or financial gifts can be counted as available resources, pushing the individual over strict asset limits and triggering a loss or reduction of vital benefits.

2. Special Needs Trusts Are Essential — But Not the Whole Picture
A Special Needs Trust (SNT) allows assets to be set aside for the benefit of a person with a disability without affecting their eligibility for many public benefits. These trusts can greatly enhance their quality of life by covering expenses that public programs don’t — such as travel, therapies, education, recreation, and companionship. Trusts are a cornerstone of special needs planning — but they are just one part of a broader strategy. Effective planning also considers legal decision-making, maximizing all manner of public benefits, housing, care coordination, and long-term support systems.

3. Planning Should Begin Early and Be Reviewed Often
Life changes — and so do laws and benefits. Special needs planning should start early and be reviewed regularly to address:
• Shifts in diagnosis, capacity, or support needs
• Major life transitions (such as turning 18, finishing school, or the loss of a caregiver)
• Changes in assets, inheritance, or settlements
• Evolving rules, policies, or service availability, such as updates to SSI financial eligibility calculations, changes in Medicaid income and asset thresholds, or growing waitlists for home and community-based services
• Changes in availability or suitability of key persons named in documents, such as trustees, trust protectors, members of a trust advisory committee, or others playing a key role in the life of the beneficiary
• A Memorandum of Intent is an extremely useful document, as it is a roadmap to the person with special needs, including but not limited to critical care and medications, psychological and social support, desires about housing, activities, likes and dislikes, hopes and dreams for the future life of the beneficiary, and other items of importance tailored to the beneficiary.

4. It’s About Autonomy, Not Just Money
Good planning isn’t just financial — it’s personal. Planning should support the individual’s dignity, independence, and voice, including:
• Choosing the right trustees, advocates, and caregivers
• Exploring alternatives to guardianship — such as health care directives, durable powers of attorney, and supported decision-making — which is a flexible approach that allows individuals with disabilities to make their own choices with help from trusted supporters, rather than having decisions made for them
• Planning for housing, education, work, and community life
• Involving the person with a disability in the planning process whenever possible

5. You Don’t Have to Do It Alone — And You Shouldn’t
Special needs planning is complex, and the availability of supports and services varies from state to state. Waitlists for services and placement can be long, eligibility rules can be confusing, and public resources are often stretched thin. That’s why advance planning and broad thinking are essential.

This resource was developed by the National Academy of Elder Law Attorneys (NAELA) and the Special Needs Alliance (SNA).