Planning for Special Needs Children – A Parent’s Checklist

My son, Henry, is currently preparing for his Eagle Scout project.  The project is an Easter egg hunt and some other activities for the Cache Valley chapter of the Utah Downs Syndrome Foundation.  We are all really excited about the opportunity.  Working with Henry on the project inspired me to want to put together this brief checklist of issues for parents to consider when planning for their special needs child.

  • Nominate in your estate planning documents the person or persons who should be named guardian and/or conservator for your child if you die or otherwise become unable to fulfill that role.

  • As your child nears 18, they will be presumed by the law to be competent to manage their own affairs. Determine whether or not your child will continue to require a guardian and/or conservator when he/she turns 18. If so, contact a qualified attorney about six (6) months prior to his/her 18th birthday to begin that process.

  • After your child turns 18, if mentally competent to do so, have them execute a financial power of attorney, medical power of attorney, and living will (advance health care directive).

  • If eligible, open and begin funding an ABLE Account for your child’s benefit. ABLE Accounts, are tax-advantaged savings accounts for individuals with disabilities and their families. ABLE savings accounts will generallly not affect your child’s eligibility for SSI, Medicaid and other public benefits.

  • Establish a special needs trust to be the beneficiary of any inheritance for your special needs child. A Special Needs Trust, also known as a Supplemental Needs Trust (SNT), is a type of trust that is designed to hold assets for a disabled individual receiving public benefits. Those assets in turn can be used to benefit the disabled individual. Assets owned inside an SNT are not counted against someone when determining their public benefit eligibility. You can read more about them here.

  • Create a letter or memorandum that communicates your preferences and your child’s preferences for their care. The letter is intended to give a caregiver or trustee of a special needs trust insight and information regarding services, supports and other personal matters affecting the child. You can get more ideas here.

While not intended to be comprehensive, I hope this checklist is a good starting point to help you plan for you special needs son or daughter.  If you would like to talk in greater depth, please give us a call.