6 Planning Issues to Consider Before Your Child With Special Needs Turns 18

Parents of children with special needs face many challenging situations every day. Sometimes it is difficult to think about your child’s care tomorrow, let alone in a few years. At age 18, children become legal adults, but your child may need continued care well after this milestone.

With the right planning now, you can ensure your child with special needs receives the personal care, education, financial protection, and medical assistance he or she requires. Here are six planning issues you should consider before your child turns 18.

1) Create a Letter of Intent. This document is not legally binding, but it can be a detailed guide for your child’s future caregivers and/or guardian. Your letter should include all important details about your child’s life, but at a minimum, you should set forth:

  • Your child’s history including past experiences both good and bad, individual medical treatments, and family medical information, a proven daily schedule, religious upbringing, education plans, and behavioral issues.
  • Your child’s personal preferences such as food choices and allergies, morning routine, favorite clothes/toys/pets, helpful counselors and those who did not help, and other valuable information to assist a future caregiver.
  • Government benefits applied for, received, and recertification dates.
  • Your vision of your child’s future including an ideal residential environment, possible employment opportunities, and continued religious and social affiliations.

Once prepared, sign and date this letter and share it with family members and other interested people. Discuss the details and be sure to revisit and update this letter over time. This document also can be the basis for special needs financial planning.

2) Carefully consider where your child will live and what their day will entail after they are no longer eligible for Special Education. The Illinois State Board of Education established special education programs for public schools, but these programs end at age 22. Where will your child live and what will their meaningful day look like in 10 years? In 20 years? After you are gone?

3) Preparing to apply for Supplemental Security Income (SSI) and Medicaid. Before your child turns 18 you should begin the process of applying for SSI and Medicaid by gathering the needed information necessary to complete the applications.  Please note that unless the family is very low income the child should not apply for SSI until the first day of the calendar month after their 18th birthday.

4) Consider a Legal Guardianship or Power of Attorney. Guardianship is a court process where a judge appoints someone to care for a person who is unable to care for themself. The guardian must file annual reports with the court and request permission to spend the child’s assets in some situations.  If the child with special needs has the legal capacity to understand, he or she can appoint a Power of Attorney to handle financial and property issues along with medical and personal concerns without court intervention. With a Power of Attorney, the person with special needs retains more control over their life, but is less protected from themselves and others. Choosing the best alternative will depend on your child’s specific situation and needs.

5) Do your own Estate Planning, educate family members, and establish a Third-party Special Needs Trust. A Special Needs Trust shields assets while maintaining your child’s eligibility for SSI and Medicaid benefits. The trustee has the power to invest and manage the trust assets left by or gifted to the trust by family members as well as spend those assets for the benefit of the child.

6) Consult with an attorney who specializes in these matters to ensure your child’s future is protected. The attorneys at Rubin Law will thoroughly discuss the issues mentioned above and much more.

Rubin Law is the only law firm in Illinois exclusively limited to providing compassionate special needs legal and future planning to guide our fellow Illinois families of children and adults with intellectual disabilities, developmental disabilities, or mental illness down the road to peace of mind. For more information, email us at email@rubinlaw.com or call 866-TO-RUBIN.