Special Needs Estate Planning: Preparing for Your Child’s Future
As a parent, you know the little things that make your child feel safe and understood. You know their comfort routine and the subtle signs that indicate something may be wrong. If your child has a disability and ongoing support needs, thinking about a future when you are no longer there to help them can be especially overwhelming. You may wonder who will notice those details and offer the patience, reassurance, and care you have always provided for them.
Planning for that future can help your family carry on even when you are not there. By sharing what you know about your child and preparing for their financial needs, you can help future caregivers understand both the support they need and the person they are.
Special needs estate planning can help turn those wishes into practical arrangements. Documenting care instructions and exploring options for financial support and legal protection can provide a starting point for building a plan centered on your child’s well-being and quality of life.
How to Prepare a Care Plan
Many parents of disabled adults establish daily routines to promote stability and comfort for their children. When creating your estate plan, make sure your child’s routine and preferences are documented in a letter of intent so the next caregiver is aware of your wishes. This document can be as detailed as you like, including information about your child’s meal preferences, food aversions, hobbies, medications, and a list of medical providers.
After listing their care needs, you should begin the process of determining how decisions will be made for your child. One option to consider is a supported decision-making (SDM) program. This empowers your child with the ability to make their own life decisions with the support of a trusted support team like a family member, friend, mentor, or colleague. In an SDM, the support team helps your child understand, consider, and communicate decisions, providing them with the knowledge to make informed choices independently. This fosters a sense of independence and autonomy. Unlike guardianship or conservatorship, an SDM agreement is not legally binding but is useful for identifying trusted individuals.
Another option for children who are unable to make their own decisions, whether due to being non-verbal or having cognitive challenges, is appointing a durable power of attorney. This legal arrangement allows you to designate someone to make medical and financial decisions for your child when you are no longer able to do so. By appointing a person in your estate plan, you can help prevent the possibility of a judge in probate court assigning a guardian or conservator for your child.
Understand How Inheritance May Affect Disability Benefits
In 2022, the U.S. Census Bureau reported that the median income for the U.S. civilian noninstitutionalized population aged 16 and over with a disability was $30,885.[1] Some disabled adults supplement their income with Supplemental Security Income (SSI) benefits or Social Security Disability Insurance (SSDI) from the Social Security Administration (SSA). However, if you plan to leave an inheritance for your child, you must be aware of how it will affect their benefits.
As of 2026, SSA requires an SSI-eligible individual’s wages to exceed no more than $2,073 a month and $3,067 a month for a couple. Income from pensions, gifts, and Social Security may not exceed more than $1,014 per month for individuals and $1,511 a month for couples.[2] For those receiving SSDI, the income limit is $1,690 per month (or $2,830 if you are blind).[3] Additionally, to qualify for SSI, countable resources (assets) must not exceed $2,000 for an individual or $3,000 for a couple.[4]
If your child receives an inheritance from your estate, they will become ineligible for SSA benefits. Even if your child refuses the inheritance to preserve their benefits, the SSA may consider it “constructively received,” meaning the income is credited to their account or made available to them, even if they haven’t physically received it. For tax purposes, they are considered to have received it.
To prevent your child from losing their government benefits, consider creating a special needs trust.
Set up a Special Needs Trust For Long-term Financial Support
A special needs trust (SNT) is a type of trust for individuals with disabilities that allows them to receive assets while remaining eligible for benefits like SSI or Medicaid. The funds in the account can be used for anything your child needs, such as housing, medical bills, home care, education, and food.
SNTs are set up similarly to other trust accounts where the trust includes a grantor (the person who creates the fund), a trustee (the person who manages the account), and a beneficiary (the recipient of the benefits). However, the way the trust is funded can vary depending on the type of special needs trust you select.
The two main types of special needs trusts are third-party special needs trusts and first-party special needs trusts. A third-party trust, one of the most common types, is funded by someone other than the beneficiary. This could be a parent, grandparent, sibling, loved one, or a combination of different donors. In a stand-alone third-party trust, the beneficiary can access the assets while the grantor is alive. In a testamentary trust, the trust is part of the grantor’s last will and testament, meaning the beneficiary won’t receive the assets until after the grantor’s death. To ensure your child continues to receive government benefits with this type of trust, consider making it irrevocable.
The second type of special needs trust is a first-party trust. This trust is more suited for beneficiaries who are mentally able to manage their finances since they will be funding it themselves. It is common for individuals to choose this type of trust if they had assets before becoming disabled (e.g., someone who developed Long COVID, blindness, or amyotrophic lateral sclerosis (ALS). Under the Special Needs Trust Fairness Act, the beneficiary can fund the trust themselves or allow a parent, grandparent, or legal guardian to fund it using the beneficiary’s assets.[5] Beneficiaries should know that if they select this type of trust, any remaining assets in the trust will be used to repay Medicaid before being distributed to their contingent beneficiaries.[6]
How an ABLE Account May Fit into Your Plan
The ABLE Account, a tax-advantaged savings program for eligible people with disabilities, was established by the Achieving a Better Life Experience Act of 2014. Under this Act, individuals whose disability began before the age of 26 can save money in an ABLE account without losing their government benefits. Starting January 1, 2026, the onset age will increase to 46 years old.[7] The funds in an ABLE account must be used for qualified disability expenses, such as education, legal fees, funeral expenses, and assistive technology, and are tax-free. This provides a significant tax and savings benefit as out-of-pocket expenses continue to rise for disabled Americans.
To be eligible for this program, you must already be receiving SSI payments or SSDI benefits or have a signed disability certificate from a licensed physician stating your diagnosis and showing that you have/had severe functional limitations that began before age 26. As of 2026, the contribution limit for an ABLE account is $20,000. The balance limit varies by state and matches the respective state’s education-related 529 savings account balance limit.[8]
Build a Plan for Your Family’s Future
Your child’s future support depends on both financial resources and the people who understand their needs. A thoughtful plan can connect those pieces by documenting care preferences, identifying trusted support, and coordinating how assets will be managed.
Consider working with a financial advisor to tailor an estate plan for your specific family situation.
At Hightower Signature Wealth, our advisors can help your family explore special needs estate planning arrangements that reflect your child’s circumstances. Our advisors can provide ongoing support as care needs, family relationships, and financial circumstances change.
With a well-crafted plan, you can take comfort in knowing your child will be well taken care of when you are no longer around.
Sources
[1] US Census Bureau. (2024, August 14). Anniversary of Americans With Disabilities Act: July 26, 2024. Census.gov. https://www.census.gov/newsroom/facts-for-features/2024/disabilities-act.html
[2] Social Security Administration. (2026, January). Are you eligible for supplemental Security income (SSI)? (Publication No. 05-11003). U.S. taxpayer expense. Retrieved July 8, 2026, from https://www.ssa.gov/pubs/EN-05-11003.pdf
[3] Substantial gainful activity. (n.d.). Retrieved July 8, 2026, from https://www.ssa.gov/oact/cola/sga.html
[4] SSI Spotlight on Resources | Supplemental Security Income (SSI) | SSA. (n.d.). Social Security. Retrieved March 17, 2025, from https://www.ssa.gov/ssi/spotlights/spot-resources.htm
[5] U.S. Congress. (2015). Special Needs Trust Fairness Act of 2015. Retrieved March 18, 2025, from https://www.finance.senate.gov/imo/media/doc/S%20349%20Mark.pdf
[6] Estate Recovery | Medicaid. (n.d.). Retrieved March 18, 2025, from https://www.medicaid.gov/medicaid/eligibility/estate-recovery/index.html
[7] What are ABLE Accounts? – ABLE National Resource Center. (2025, February 6). ABLE National Resource Center. https://www.ablenrc.org/what-is-able/what-are-able-acounts/
[8] Howard, J. (2025, March 4). ABLE Account Contribution Limits (2025) – ABLE National Resource Center. ABLE National Resource Center. https://www.ablenrc.org/able-account-contribution-limits-2025/
This material is for general information and educational purposes only. Information is based on data gathered from what we believe are reliable sources. It is not guaranteed as to accuracy, does not purport to be complete and is not intended to be used as a primary basis for investment decisions.
Find answers to your questions about Hightower Signature Wealth
Hightower Signature Wealth is a fiduciary wealth management practice that provides investment management, financial planning, estate strategies, insurance, and banking solutions. We work with families, business owners, professionals, women, and retirees across more than 40 offices nationwide. Our advisors take the time to understand your financial priorities, develop a plan around your goals, and adjust that plan as your life and circumstances evolve.
Hightower Signature Wealth provides a broad range of wealth management services designed to address different aspects of your financial life. Our capabilities include investment management, financial planning, retirement planning, estate strategies, insurance and risk management, banking solutions, and charitable giving strategies. By considering these areas together, our advisors can develop a coordinated approach based on your goals, priorities, financial circumstances, and plans for the future.
Hightower Signature Wealth advisors work with a broad range of clients, including women, families, business owners, professionals, retirees, and high-net-worth individuals navigating major life or financial transitions. Rather than applying a generic playbook, each advisor tailors the plan to a client’s specific goals and current stage of life – from early-career decisions to multigenerational wealth transfer.
Yes. Hightower Signature Wealth advisors serve as fiduciaries, which means they are committed to acting in their clients’ interests when providing investment advice. We offer fee-based advisory services, with fees depending on the services provided and the specifics of your relationship. Your advisor will discuss the applicable fee structure with you so you can understand how you are charged and what services are included.
Hightower Signature Wealth has more than 40 offices nationwide, allowing our advisors to serve individuals, families, and organizations across the country. Depending on your location and preferences, you may be able to work with an advisor locally or connect with a team in another market. Visit our Locations page to explore our office locations, learn more about the teams in each market, and find an office near you.
Getting started with Hightower Signature Wealth is simple. Complete our online contact form with some basic information about yourself and what you are looking for, and we’ll connect you with an advisor who can discuss your needs and financial priorities. That initial conversation is an opportunity to learn more about our approach, ask questions, and determine whether working with a Hightower Signature Wealth advisor may be a good fit.
Your first conversation is an opportunity for us to learn more about you, your financial circumstances, and what you hope to accomplish. An advisor may ask about your goals, current investments, family considerations, business interests, and other priorities that could influence your financial plan. You’ll also have an opportunity to ask questions, learn about our approach, and discuss what working together could look like.
