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In my high school psychology class, my history teacher came and spoke to us one day about his disabled son.  He read to us a short story in which he compared having a disabled child to a trip to Europe.  The story began with a couple planning to go to Italy to tour all of the beautiful sights in Italy, however instead of landing in Italy, the couple landed in Holland.  While the couple was initially shocked at landing in Holland, they came to appreciate Holland’s beautiful landscapes, windmills and tulips.  In short, they found beauty and comfort in their surprise trip.

The surprise trip is an allegory to having a disabled child.  Having a disabled child may be an initial shock; but, in the end, having a disabled child is as awarding if not more so, than having a non-disabled child.  In working with many clients of disabled children, I have seen some of the greatest examples of parenting, and I have been inspired by them.

Inevitably, our children grow up, including our disabled children. One subject that gets little attention is how to protect a disabled child once he or she becomes an adult.  This short article will give help parents of disabled children understand the process of establishing guardianship of adult children.

Under Illinois law, a person who is 18 years or older is presumed to be an adult, regardless of physical and/or mental capabilities.  Absent some determination of incapacity, a person who turns 18 becomes free to make decisions and be responsible for his or her own actions.  A person with significant disabilities, however, may be unable to manage his or her own affairs as an adult. Adults with significant disabilities are dependent on other people who need to have the legal authority to care for them, manage their affairs and make decisions for them.

The responsibility of caring for a disabled adult often falls on the parents or other family members.  Healthcare providers, including doctors, pharmacists and therapists, require proof of legal authority for one person to make personal and healthcare decisions for another person who is an adult.  Health care providers will not even discuss or share health care information without some waiver of privacy or other authority. The legal means to accomplish this is through a guardianship proceeding.

A guardianship proceeding is handled through the court system pursuant to the Probate Act (755 ILCS 5/11A-1 et seq.)  The process begins by filing a petition for guardianship, obtaining a physician’s report and providing notice to the persons entitled to receive the notice who are identified in the Act (the closest adult relative including parents and adult siblings).  Many counties have forms available online through the local clerk of the circuit court’s website.

After notices are given as required by law, an initial court date will be set in which the judge will appoint a guardian ad litem.  The purpose of the guardian ad litem is to determine that a guardianship is warranted and that the proposed guardian is suitable.  The guardian ad litem is the eyes and ears of the judge. A request can made to bypass the appointment of a guardian ad litem, which creates delay and increases cost, and judges may waive the guardian ad litem appointment, especially when a natural parent is seeking guardianship before the child turns 18.

In fact, the entire process can be streamlined if it is begun before the child turns 18 and becomes an adult in the eyes of the law. Before a child turns 18, a parent still has legal authority over the child so service on the child is not separately required. Presumptions in favor of the parents apply, meaning that a judge might feel comfortable waiving the guardian ad litem appointment.

An additional consideration to bear in mind in dealing with disabled adults is the establishment of a special needs trust.  A special needs trust could be used to set aside funds for the disabled adult’s benefit without adversely affecting any governmental assistance that may be available.  A disabled adult will be ineligible for government assistant if the disabled adult has means available for basic support and health care. A special needs trust allows money to be set aside for “special” needs (over and above basic support and health care) that will allow the disabled adult to qualify for government assistance in spite of the funds that are available. It is important to utilize an attorney familiar with special needs trusts to avoid jeopardizing eligibility for government assistance, as well as potentially adverse tax consequences, probate issues and other potentially negative results.

If the parents are divorced, they may want to discuss and plan for care for their child who is a disabled adult in their divorce decree.  A disabled adult may be eligible for support from one or both parents under 750 ILCS 5/513.  Unlike child support under 750 ILCS 5/505, the responsibility of the parents to contribute to the needs of their adult children is not set as a specific percentage of net income; rather it is determined by the financial needs of the child and the respective ability of the parents to contribute to those needs.

As with anything, advance planning and though, can save time, cost and frustration down the road.  Caring for a disabled child who is now an adult can present legal obstacles that are not issues while the child is a still minor.  Planning for the care and management of a disabled child’s needs before reaching adulthood is highly recommended. If you are beyond that point, and your disabled child has already reached legal adulthood, there is no reason to lose heart. The law provides a relatively easy means for establishing the authority for you to continue caring for your child and making the decisions that need to be made through the means of a legal guardianship.

  • RJS082Roman J. Seckel
  • Drendel & Jansons Law Group
  • 111 Flinn Street
  • Batavia, IL 60510
  • (630) 406-5440
  • (630) 406-6179 fax
  • rjs@batavialaw.com

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For more articles on family law topics, see the Drendel & Jansons Estate Planning Blog.

For family law resources, see the Drendel & Jansons Estate Planning Resource Page.

If you need immediate help or advice, please contact us. 

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