Safeguarding the Future: 4 Essential Steps for Protecting a Child with Disabilities

Raising a child is a significant financial responsibility, averaging about a quarter of a million dollars, excluding college expenses. For parents of a child with special needs, this cost can more than double. Planning for the long-term well-being of your child with special needs is a crucial step to ensure their continued care and support even after you’re no longer there. While it may be challenging to contemplate, a well-thought-out strategy can provide peace of mind and security for your child’s future.

1. Envisioning a Life After You: Recognize that every child with special needs is unique, and families face individual challenges in preparing for the long term. Consider the specific needs of your child—will they require daily custodial care, ongoing medical treatments, or live independently or in a group home? Assess whether family members can contribute to their care. Addressing these questions will help shape a vision for your child’s future care.
2. Preparing Your Estate: Without proper preparation, the financial demands of your child’s lifetime needs may surpass your available funds. Explore government benefits like Supplemental Security Income (SSI) and Medicaid, which your child may qualify for based on their situation. Due to low-asset thresholds for government programs, evaluate the option of making property transfers to your child with special needs. Ensure you have an updated will that aligns with your wishes, and consider establishing a special needs trust. This trust can manage assets to fund your child’s care without jeopardizing their eligibility for government assistance. Consult with a professional well-versed in the associated tax rules and regulations before proceeding with a trust.
3. Involve the Family: Engage all family members who will be affected in the decision-making process. A unified front of surviving family members caring for your child is ideal. Open communication and collaboration will contribute to a smoother transition and long-term support system.
4. Identify a Caregiver: To empower a caregiver to make financial and healthcare decisions when your child reaches adulthood, appoint them as a guardian. Initiating this process takes time, so start early. Draft a “Letter of Intent” expressing your wishes and providing details about your child’s care. Although not a legal document, it serves as a guide for the caregiver and should be stored securely alongside your will.

Navigating the complexities of planning for a child with special needs can be challenging, but you don’t have to face it alone. Collaborate with loved ones and seek guidance from qualified professionals to navigate the various facets of this important challenge. If needed, we are here to offer assistance—please don’t hesitate to reach out.

As a Chartered Special Needs Consultant, Lily Fallah, ChSNC® specializes in special needs financial planning. If you have a child or loved one with special needs and are interested in developing a plan to support them now and in the future, schedule a no-cost consultation today.