what should I do before my child is 21?

Families in New Jersey with a child diagnosed with autism should focus on several key legal and procedural steps to secure supports, services, and protections before the child turns 21. Early action and preparation are critical, as many processes become more complex once the child reaches adulthood.

Educational and Therapy Services

From the time of diagnosis until age 21, ensure the child receives an Individualized Education Plan (IEP) via the school district, which must provide services under state Autism Education Law. New Jersey mandates insurance coverage for autism therapies, including behavioral, speech, occupational, and physical therapies up to age 21. The Autism Mandate also shields families from excessive out-of-pocket therapy expenses.

State and Federal Support Programs

Register with the New Jersey Division of Children’s System of Care (CSOC) for supports up to age 21, including in-home and community services. After age 21, the Division of Developmental Disabilities (DDD) can provide adult services for those who qualify. Apply for Social Security Income (SSI) and Medicaid as soon as eligible, and review both periodically. Consider enrolling in the NJ Autism Registry to ensure first responders have important safety information for your child.

Legal Protections as Age 18 Approaches

At 18, individuals are considered legal adults. Parents must consider whether guardianship (full or limited), power of attorney, or supported decision-making options are needed, depending on the child's ability to make independent choices. Guardianship requires a court process, including evaluations and hearings, to formally appoint a guardian. Alternatives like supported decision-making may offer more autonomy while ensuring necessary support.

Financial Planning and Long-Term Security

Early financial planning is essential. Consider establishing a Special Needs Trust or ABLE account for the child; these vehicles protect assets while preserving eligibility for public benefits. Revisit estate planning to ensure resources for long-term care and designate a future guardian if necessary. Most trusts and account structures must be set up before the child receives large sums (e.g., inheritance or lawsuit settlements) to avoid benefit disqualification.

Summary Checklist

·         Access IEP and therapies through school and insurance

·         Register with CSOC (age <21) and DDD (age >21) for state supports

·         Apply for SSI and Medicaid as soon as eligible

·         Enroll in NJ Autism Registry for safety

·         Seek guardianship/legal protection planning before age 18

·         Establish a Special Needs Trust or ABLE account

·         Consult qualified legal, financial, and advocacy professionals regularly to stay up-to-date with changing laws and services

Completing these key actions will help maximize support, secure benefits, and provide lasting protection for a loved one with autism in New Jersey.