Planning for the Cost of Long-Term Care for a Special Needs Child

Parents of children with significant disabilities face a major financial planning challenge. Raising a child who will need ongoing care for the rest of their life requires a plan that goes far beyond a standard will or trust. The decisions you make now will shape your child’s quality of life decades from now, including after you are no longer here to advocate for them. This makes it extremely important to get the details exactly right. 

If you are a parent in Illinois thinking seriously about a special needs trust for your child, now is a good time to act. Illinois law and federal benefit programs have specific rules that directly affect how you structure your planning, and the earlier you plan and build the right framework, the more options you’ll have.

Our Naperville estate planning attorney has experience working with special needs trusts and other complicated estate planning and asset protection issues. We care about the long-term wellness of our clients’ families and will work with you to create an estate plan that meets your needs. 

What Does Long-Term Care Actually Cost for a Special Needs Adult?

The honest answer is that it depends heavily on the level of care your child needs, but the numbers are significant almost no matter what the level of care will be. 

Residential care facilities in Illinois can cost anywhere from $60,000 to well over $150,000 per year depending on the level of support the adult needs. In-home care, which many families prefer, involves its own substantial costs for personal care aides, medical equipment, transportation, therapies, and medications.

What makes this especially complicated is that government benefit programs — particularly Medicaid and Supplemental Security Income, or SSI — have strict asset and income limits. If your child inherits money or property directly from your estate, that inheritance could disqualify them from the very benefits they depend on. This is one of the main problems that careful estate planning is designed to solve.

What Is a Special Needs Trust? How Does it Work? 

A special needs trust — sometimes called a “supplemental needs” trust — is a legal arrangement that holds assets for the benefit of a person with a disability. This prevents the disabled person from holding the assets themselves, thereby disqualifying them from means-based government benefits. The trust is designed to pay for things that government programs do not cover, rather than replacing those benefits.

Assets held in a properly drafted special needs trust are not counted against your child when determining eligibility for Medicaid or SSI. Done correctly, this means your child can benefit from the financial resources you leave behind while still receiving the government assistance they are entitled to.

In Illinois, special needs trusts must be carefully created to follow both state and federal requirements. A trust that is worded incorrectly can accidentally disqualify a beneficiary from benefits or create tax problems for the family.

What Can a Special Needs Trust Pay For?

A well-structured special needs trust can cover a wide range of expenses that improve your child’s quality of life without affecting their benefit eligibility. This includes:

• Recreational activities and travel
• Clothing and personal items beyond what government programs cover
• Technology and communication devices
• Therapy and medical treatments not covered by Medicaid
• Education and vocational training
• Transportation
• Home modifications and accessibility equipment
• Entertainment and social activities

The trustee, who is the person or institution you name to manage the trust, is responsible for making distributions that serve your child’s best interests within those guidelines.

Long-Term Care Planning and the ABLE Act 

The Achieving a Better Life Experience Act, known as the ABLE Act, created a separate planning tool that works alongside a special needs trust rather than replacing it. An ABLE account is a tax-advantaged savings account available to individuals whose disability began before age 46. As of 2026, Illinois participates in the national ABLE program through Illinois ABLE, which allows qualifying individuals to save up to $20,000 per year without affecting their SSI or Medicaid eligibility, up to a total balance of $100,000.

ABLE accounts are more flexible than special needs trusts for certain everyday expenses and can be managed directly by the beneficiary in some cases. However, they have contribution limits and other restrictions. They are a complement to, and not a substitute for, a properly funded special needs trust.

Who Should Be the Trustee of a Special Needs Trust?

Choosing a trustee is one of the most important decisions in the process of setting up a special needs trust. The trustee has legal responsibility for managing the trust assets and making distribution decisions, sometimes for decades. Parents often name a trusted family member, but there are real risks in relying on an individual trustee. They may:

• Predecease your child
• Become incapacitated
• Lack the financial and legal sophistication the role requires

Many families use a combination approach. They’ll name a family member or close friend as co-trustee alongside a professional trustee or corporate trustee. This keeps a close personal connection while ensuring that someone with financial and legal accountability is always involved.

In Illinois, you should also think carefully about naming a successor trustee so you have a person or institution to take over if your first choice is unable to serve.

Getting the planning right the first time protects your child from gaps in care and from losing access to programs they may need for life.

Contact a Naperville Estate Planning Attorney Today

Planning for a child with special needs deserves help from someone who understands both the legal tools and your family’s financial picture. At Gierach Law Firm, Attorney Denice Gierach brings over 30 years of experience and a compassionate, logical approach to helping families.

If you are ready to build a plan that truly protects your child’s future, call the Naperville estate planning lawyer at Gierach Law Firm at 630-756-1160 today.