If you have a child with special needs, you know they’ll require extra planning to ensure they are well cared for in the future. However, between therapy appointments, IEP meetings, and everyday responsibilities, Special Needs Planning can often end up on the back burner. Additionally, many parents find that their biggest roadblock to completing this planning is their own fear of disability and death.
One way to navigate these fears is to take the process step by step and view it as a plan that benefits your entire family today—not just a plan for what happens when you are no longer around. A well-structured Special Needs Plan provides continuous, consistent support for individuals with special needs so they can live their best lives while maintaining a tailored balance of autonomy and protection.
To help you get started, we’ve broken Special Needs Planning down into five essential steps:
Step 1: Understand How Special Needs Planning Benefits Your Family
Special Needs Planning ensures individuals with disabilities receive proper support while maximizing public benefits like Supplemental Security Income (SSI) and Medicaid. These programs provide essential financial and healthcare assistance but require individuals to meet strict low-income criteria.
Direct inheritances or gifts to individuals with disabilities can unintentionally disqualify them from these benefits. Even paying rent or allowing them to live rent-free can decrease their SSI benefits unless handled properly. Fortunately, Special Needs Planning tools, such as Special Needs Trusts (SNTs) and ABLE accounts (described below), allow families to enhance their loved one’s quality of life while preserving assets and maintaining eligibility for critical public assistance programs.
We understand this may feel overwhelming, but we are here to help you create a plan that supports your child while also considering the needs of your entire family.
Step 2: Identify the Right Level of Support for Your Child
A successful plan begins by envisioning your child’s best possible life—both with your support now and in the future when you may no longer be able to care for them. What support do they need today, and what will they require long-term to thrive?
As your child approaches adulthood, you may also need to consider whether conservatorship, guardianship, or supported decision-making is the best option. Guardianship and conservatorship transfer certain legal rights to a guardian or conservator, while supported decision-making allows individuals with disabilities to retain their rights with assistance from appointed agents.
Another crucial aspect of this step is building a strong support network. Even if a parent currently meets all of their child’s needs, an abrupt transition in caregivers due to unforeseen circumstances can be challenging. A broader care team helps create a smoother transition and ensures continuity in care.
Step 3: Develop a Future Budget Estimate
Special Needs Planning involves ensuring there are sufficient financial resources available to support your child after your passing. This often includes a combination of public benefits, life insurance, savings, and investments.
We encourage families to estimate their child’s expenses and to consult a financial advisor, particularly one with experience in special needs planning. Choose a legal team that is happy to work alongside your advisor to align your financial and legal planning for your child’s long-term care.
Step 4: Align Your Financial and Legal Affairs
This step forms the foundation of Special Needs Planning.
- Third-Party Special Needs Trust (SNT): To ensure financial stability, inheritances and significant gifts should be directed into a third-party SNT. These trusts allow funds to be used for your child’s benefit while protecting their eligibility for government programs.
- ABLE Accounts: For those who qualify, ABLE accounts can be a useful tool for managing expenses without jeopardizing benefits. Annual contributions up to $17,000 can be made into an ABLE account without penalty.
- Avoiding First-Party Special Needs Trusts: If an individual inherits assets directly and must establish a first-party SNT, Medicaid may require repayment from these funds upon their passing. In contrast, third-party SNTs allow remaining funds to pass to other family members without Medicaid estate recovery.
A properly structured financial and legal plan ensures that your child’s financial resources are protected and that they continue receiving the benefits they rely on for their well-being.
Step 5: Establish a Decision-Making Process and Lifelong Support System
A great Special Needs Plan is not just about documents—it’s about implementation. We encourage families to gradually introduce elements of their plan while they are still actively involved in their child’s life.
For example:
- Trustee Planning: A trustee managing a Special Needs Trust should begin implementing annual distribution plans for allowable expenses, ensuring all involved parties understand their roles and responsibilities.
- Transitioning Care: If your plan includes your child living with a specific family member, start introducing overnight visits to ease the transition.
- Building Supportive Routines: If extended family members will play a role in your child’s care, initiate regular interactions now to establish reliable relationships and routines.
By implementing these steps gradually, you can help ensure a seamless transition for your child while providing peace of mind for your entire family.
Take the Next Step in Special Needs Planning
Seeking proper diagnoses, therapy, and educational support may take priority at certain times, but securing your child’s future is equally critical. The financial and social consequences of delaying Special Needs Planning can be significant.
When you’re ready to take the first step, we’re here to guide you. We offer Special Needs Planning Sessions to help you create a clear, legally sound plan tailored to your child’s unique needs. Our heart-centered, counseling-based approach ensures you make informed decisions that benefit your loved one and your entire family.
This article is a service of The Lineage & Legacy Law Firm, PLLC. The content is for educational purposes only and should not be considered legal, tax, or investment advice. If you require legal guidance, consult a professional.
Attorney Maureen MacSweeney is the founding attorney of The Lineage & Legacy Law Firm. After working for 25 years as an Advanced Practice Nurse Midwife, Maureen made the shift from working in healthcare to focusing on law and legal life planning for families.
In her Florida estate planning practice, Maureen provides high-value solutions for family and individual wealth preservation, asset protection and protection planning for those we cherish most, our children. Her engagement with clients differs from those of traditional law firms by offering empowering information that educates clients, as opposed to mere document drafting. Her passion is to serve families by helping them to protect their children, plan for their future and in the process keep the family out of conflict and court.
Maureen is the proud, single mother of an 18-year-old daughter. She credits her daughter as the source of her inspiration for designing estate plans for families.
Contact Maureen’s office today to schedule a consultation at bit.ly/TalkToMeFREE and begin your Special Needs Planning journey.
