When Should Special Needs Planning Start?

Raising a child with a disability involves both day-to-day caregiving and long-term planning. From educational support to healthcare access, parents often juggle multiple responsibilities simultaneously. However, one of the most important—and frequently delayed—tasks is planning for the child’s financial and legal future.

Special needs planning includes creating legal structures to manage assets, arranging care beyond the parents’ lifetime and protecting eligibility for government benefits. These efforts can be overwhelming, especially when a child is young. However, the earlier families begin, the more options and flexibility they have to build a secure and stable future.

Early Childhood: Building a Foundation to Support Your Special Needs Child

Special needs planning doesn’t have to begin with complicated legal documents. In the early years, it often starts with education and medical advocacy. Parents learn about their child’s diagnosis, explore therapy options and understand what support systems may be available.

This is also a time to begin understanding government programs, such as Supplemental Security Income (SSI), Medicaid and early intervention services. Knowing the eligibility criteria for these benefits helps guide future decisions, such as how much money can be gifted to a child without affecting benefits.

By the time a child enters school, parents should consider how a long-term care plan will eventually take shape. While legal tools may not be necessary immediately, having a basic outline can help reduce uncertainty.

Adolescence: Preparing for Transition

During the teenage years, special needs planning becomes more urgent. At age 18, a child is considered a legal adult, regardless of disability. That means parents no longer have automatic authority to make decisions about healthcare, finances, or education.

To maintain involvement and provide protection, families may need to:

• Establish a guardianship or pursue less restrictive alternatives, like supported decision-making agreements.
• Create a durable power of attorney or healthcare proxy if the child can sign legal documents.
• Begin applying for adult benefits, such as SSI or Medicaid.

This is also the right time to consider drafting a letter of intent, which outlines the child’s routines, preferences, care needs and long-term goals. Although not legally binding, this document can serve as a guide for future caregivers and trustees.

Adulthood: Legal and Financial Tools

Once a child turns 18, legal and financial planning becomes essential. A core part of this plan is establishing a Special Needs Trust (SNT). This tool enables families to set aside money for the child’s benefit without jeopardizing eligibility for government assistance.

Funds in a special needs trust can be used for housing, education, recreation, therapies and other non-covered expenses. The trust is managed by a trustee, who can be a family member, a professional, or an organization.

There are two main types of SNTs:

• Third-party trusts, funded by parents or relatives
• First-party trusts, funded with the child’s own assets (such as an inheritance or legal settlement)

Creating a trust during the parents’ lifetime ensures that it is structured properly and gives time to choose the right trustee. It also allows families to plan for continuity of care after the parents are no longer able to provide direct support.

Estate and Special Planning Integration

You should fully integrate special needs planning with your parents’ estate plan. Steps to completing this integration include:

• Naming the special needs trust as the beneficiary of life insurance or retirement accounts
• Avoiding outright gifts that could disqualify the child from benefits
• Updating wills to reflect the care plan and appoint guardians

Key Takeaways

• Start early to stay flexible: Beginning in childhood allows time to adjust plans as needs change.
• Age 18 is a legal turning point: Guardianship, powers of attorney and benefit applications must be addressed.
• Special needs trusts protect assets and benefits: These tools provide financial support without disqualifying the child from aid.
• Planning must include long-term care and support: A well-rounded plan accounts for daily needs, housing and future caregivers.
• Estate plans must align with special needs planning: Avoiding direct inheritance and naming the trust as beneficiary prevents costly errors.

Special needs planning is not just about legal documents—it’s about creating peace of mind for you and security for your child’s future. At The Werner Law Firm, our estate planning attorneys help families establish special needs trusts, guardianships, and estate plans that protect benefits while ensuring ongoing care and financial stability.

If you have any questions, schedule a free appointment with us through our online appointment page.

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Reference: Special Needs Alliance (April 3, 2018) “How to Get Started with Special Needs Planning”