When Your Adult Child Has Special Needs: Estate Planning Beyond Age 18

As parents, we spend our children’s entire lives preparing them for independence. We teach them to tie their shoes, ride bikes, drive cars, and eventually manage their own lives. But what happens when your child reaches adulthood and still needs significant support? What happens when independence isn’t realistic, and you’re facing the reality that your special needs child will need care for the rest of their life?

If you’re the parent of an adult child with special needs, you’re not alone. The decisions you make today will impact your child’s quality of life, financial security, and access to government benefits for decades to come. However, with the right planning, it’s possible to create a secure future for your child while protecting the government benefits they depend on. It’s complicated, yes, but it’s absolutely doable, and we’re here to tell you how below.

The Reality Check: What Changes When Your Child Turns 18

When your child with special needs turns 18, everything changes legally, even if nothing changes practically. Suddenly, your adult child is considered legally competent to make their own decisions, despite not being able to actually do so safely.

This means you can no longer access their medical records, make healthcare decisions, or manage their finances without proper legal authority. It doesn’t matter that you’ve been doing these things for 18 years; your child is an independent adult in the eyes of the law.

Many parents discover this harsh reality when they try to discuss their child’s care with a doctor or access important information, only to be told they no longer have legal standing. It’s frustrating and scary, especially when you know your child needs ongoing support.

The good news? You can regain this authority through proper legal planning. In other words, it’s not lost forever if you’re a little late in the planning. The key is acting quickly and understanding your options.

Guardianship vs. Other Alternatives: What’s Right for Your Family?

When most people think about supporting an adult child with special needs, guardianship usually comes to mind first. Guardianship grants you the legal authority to make decisions on behalf of your adult child. That being said, it’s not always the best solution for every family. Consider the following definitions and how they might affect your family, given your unique circumstances: 

• Full guardianship means the court declares your child legally incompetent, and you gain the authority over all their medical, financial, and personal decisions. While this option provides maximum protection, it also completely removes your child’s legal rights and autonomy.
• Limited guardianship allows you to retain decision-making authority over specific areas (like finances or healthcare) while allowing your child to maintain independence in other areas of their life.
• Supported decision-making is a newer approach that’s gaining popularity. Instead of removing your child’s rights, this model provides them with support in making their own decisions. You become an advisor rather than a decision-maker.
• Powers of attorney can work for some young adults with disabilities who understand what they’re signing and can express their wishes clearly.

Every family’s situation is different, and what works for your neighbor might not work for you. The goal should be to choose an approach that provides all the necessary protections while preserving as much independence as possible for your child.

Special Needs Trusts: Protecting Benefits While Providing Security

Here’s where estate planning for special needs families gets really complicated: government benefits. If your adult child receives SSI, Medicaid, or other benefits based on their means, leaving them money directly in your will can actually hurt them.

These programs generally have strict asset limits, usually around $2,000 in resources. If your child inherits money that pushes them over this limit, they’ll lose their benefits until they spend down to the allowable amount again.

This is where special needs trusts become helpful. A properly structured special needs trust allows you to leave money for your child’s benefit without affecting their eligibility for government programs. There are two primary types of special needs trusts:

• First-party special needs trusts are funded with the disabled person’s own money (like an inheritance they’ve already received or a personal injury settlement). When the beneficiary dies, any remaining funds must be used to reimburse Medicaid for benefits received during their lifetime.
• Third-party special needs trusts are funded with someone else’s money (likely yours). These trusts don’t have the Medicaid payback requirement, making them more favorable for families.

Whichever trust you choose, it can pay for things that improve your child’s quality of life but aren’t covered by government benefits, such as vacations, entertainment, supplemental food, better housing, or equipment.

What the Trust Can and Cannot Pay For

Understanding what a special needs trust can pay for and what it cannot necessitates knowing the difference between “needs” and “wants” in the government’s eyes. Generally, a special needs trust can pay for anything that supplements government benefits but doesn’t replace them.

The trust CAN typically pay for:

• Vacations and travel expenses
• Entertainment and recreation
• Computers and electronics
• Supplemental food and dining out
• Clothing beyond the basic necessities
• Therapy and medical care that Medicaid does not cover
• Transportation and vehicle expenses
• Home improvements and furnishings
• Education and training programs

The trust generally CANNOT pay for:

• Basic food and shelter (this could reduce SSI benefits)
• Medical expenses covered by Medicaid
• Cash directly to the beneficiary
• Items that would be considered “basic support and maintenance”

The rules are complex and sometimes counterintuitive. For example, buying your child a house might seem like a wonderful gift, but it could jeopardize their benefits if not handled correctly. This is why you need experienced legal guidance from a Seattle estate planning lawyer who is well-versed in Washington’s often complicated estate planning laws. One mistake can cost your child many thousands of dollars in lost benefits.

Choosing the Right Trustee: A Decision That Matters for Decades

Selecting a trustee for your special needs trust is one of the most important decisions you’ll ever make. This person will manage potentially hundreds of thousands of dollars (or more) and make decisions that directly impact your child’s quality of life.

Many parents initially think they’ll name their special needs child’s sibling as trustee. While this can work, consider the challenge: Your other children will have their own lives, careers, and families to attend to. Managing a special needs trust requires time, attention to detail, and a thorough understanding of the regulations involved.

Some families choose corporate trustees like banks or trust companies that manage trusts professionally. They bring expertise and continuity, but they’re also expensive and may not understand your child’s unique needs and preferences.

A growing option is to use a combination approach: naming a family member or friend who knows your child well as the “personal” trustee, and then pairing them with a professional co-trustee who can handle the administrative and legal compliance aspects.

Regardless of which route you take, make sure you name successor trustees (essentially a backup), too. Trust administration can last for decades, and people’s circumstances change.

The Importance of Regular Plan Reviews

Laws change, government benefit programs evolve, and your child’s needs may shift over time. A special needs estate plan isn’t something you create once and forget about. Therefore, you should schedule on your calendar time to review your documents every few years or whenever significant changes occur in your family’s life. This might include:

• Changes in your child’s disability or care needs
• New government benefit programs or rule changes
• Family changes like births, deaths, or divorces
• Significant changes in your financial situation

Regular reviews help ward against life passages that could negatively impact the stability of your special needs child in subsequent years. 

Find a Seattle Estate Planning Lawyer to Help Create an Estate Plan That Protects Your Special Needs Child

If you’re feeling overwhelmed by all this information, that’s completely normal. Special needs estate planning is complicated, and the stakes feel incredibly high because they are. However, you shouldn’t let it paralyze you into inaction. 

Instead, start by gathering information about your child’s current benefits and care needs, and making a list of questions you’re still unsure about. Remember, you’ve been advocating for your child their entire life. Estate planning is just another way of continuing that advocacy so your child will be protected and cared for long after you’re gone.

At Elise Buie Family Law, our compassionate Washington estate planning attorneys offer a superior level of white-glove service to make sure you feel confident, supported, and prepared for anything life may throw at you. With decades worth of cumulative experience, we have a deep understanding of Washington estate planning laws and are committed to keeping your family at the center of everything we do. Contact our team today or schedule a convenient time to speak.