Planning for a Child with Special Needs in Illinois
If you’re a parent of a child with special needs, you already know that love, advocacy, and planning go hand in hand. You’ve likely spent years navigating schools, therapies, and systems—and now, you want to make sure your child is safe, supported, and cared for no matter what the future brings. The good news is that Illinois offers programs and legal tools to help families do exactly that. This guide walks you through the key steps to create a plan that protects your child’s care, benefits, and quality of life—today and for years to come.
1. Understanding CILA and SILA Housing
Illinois offers several community-based living options for adults with disabilities once they turn 18.
• CILA (Community-Integrated Living Arrangement) is a state-licensed program where adults with developmental disabilities or mental illness can live in a small group home, host family setting, or even independently with support.
• SILA (Supported Individual Living Arrangement) is a similar model that allows for more independence while still providing supervision and help as needed.
These homes are regulated by the Illinois Department of Human Services (DHS) and can provide 24-hour care, intermittent support, or family-based assistance depending on your child’s needs.
2. Creating a Special Needs Trust
A Special Needs Trust (SNT) ensures that your child can receive financial support from you—without losing eligibility for government benefits like SSI or Medicaid.
There are two main types:
• Third-Party Special Needs Trust: Funded with your money or life insurance, created as part of your estate plan.
• First-Party Special Needs Trust: Funded with your child’s own assets, such as an inheritance or legal settlement.
The trust pays for anything that improves quality of life—things like education, therapy, hobbies, transportation, or travel—without interfering with government aid.
3. Writing a “Letter of Intent”
A Letter of Intent is not a legal document, but it’s one of the most meaningful. It’s your opportunity to share your child’s routines, medical needs, personality, and your hopes for their future.
Include details like:
• Daily routines and preferences
• Favorite foods, activities, and sensory sensitivities
• Medical providers and medications
• Education and therapy contacts
• Religious, moral, or family values
• Any wishes for where or with whom your child should live
4. Financial and Government Benefits to Know
Families of special needs children in Illinois should be familiar with several programs and benefits that can protect their child’s financial security and quality of life.
• Supplemental Security Income (SSI): Monthly financial assistance for adults with disabilities who have limited income and resources.
• Medicaid Waiver Services: Covers healthcare, housing, and day programs under DHS.
• PUNS List (Prioritization for Urgency of Need for Services): Illinois’ waiting list for state-funded disability services—enrolling early is critical.
• Illinois ABLE Account: The Illinois ABLE program allows individuals with disabilities to save money in their own name without losing SSI or Medicaid benefits.
As of 2025:
• Contribution limit: $19,000 per year from all sources combined.
• Working individuals may contribute up to an additional $15,060 in earned income.
• Balances up to $100,000 do not affect SSI (above that, SSI is paused but Medicaid continues).
• Illinois taxpayers may deduct up to $10,000 (single) or $20,000 (joint) per year in contributions.
5. Transition to Adulthood
As your child approaches age 18, begin exploring adult services and benefits early. Apply for SSI and Medicaid, register for the PUNS list, and connect with a DHS caseworker to understand CILA/SILA housing options and day programs. Planning early helps prevent delays and ensures a smoother transition to adult services.
6. Housing and Care Options in Adulthood
Family CILA / SILA – Your child remains in your home with in-home support services.
Host Family CILA – Your child lives with a host family who provides daily care and supervision.
Group Home CILA – Small residential home with 24-hour staff.
Intermittent SILA – Independent or apartment living with staff visits and on-call support.
7. Your Legal Checklist
1. Establish a Special Needs Trust
2. Create or update your estate plan (revocable trust, pour-over will, etc.)
3. Apply for SSI, Medicaid, and the PUNS list
4. Open an Illinois ABLE account if appropriate
5. Write your Letter of Intent
6. Meet with a qualified Illinois attorney to coordinate all planning and beneficiary designations
8. Local Resources for Illinois Families
• Illinois Department of Human Services (DHS) – Division of Developmental Disabilities
• The Arc of Illinois – Family advocacy and transition help (www.thearcofil.org)
• Illinois Life Span Project – Free resource line for navigating programs (www.illinoislifespan.org)
• ABLE Illinois – Tax-advantaged savings accounts for individuals with disabilities (illinoisable.com)
Planning for a child with special needs is an act of love — and one of the greatest gifts you can leave for your family. It’s not just about paperwork or programs; it’s about peace of mind and the comfort of knowing your child will always be cared for with the same intention and compassion you provide today.
At Marketti Law Firm, we’re here to help you create a plan that feels personal, protective, and practical — one that honors your family’s values and safeguards your child’s future. If you’re ready to take the next step, contact our office to schedule a consultation. We’ll walk you through every detail and make sure your plan brings the security and clarity your family deserves.