Close this search box.

Surviving Parent Not Entitled To Custody Of Disabled Child

Print Article

MARCH 15, 1999 VOLUME 6, NUMBER 37

Parents of minor children are usually entitled to have custody of those children. In a divorce proceeding the court will decide which parent should retain custody of the child, or whether custody should be shared. Of course, those proceedings are often hotly contested and may result in bitterness and distrust.

Frequently, the custodial parent wishes to make arrangements for the future placement of the child in the event of the custodial parent’s death. Because the legal system protects the rights of parents to raise their own children, however, the designation of a non-parent as guardian of the child will ordinarily be ineffective; upon the death of the custodial parent, the surviving parent has the presumptive right to take custody of the child.

That is what happened in the Illinois case of Kirsten Johnson. When her mother Barbara died in 1995, Kirsten’s aunt Vera Howse petitioned for guardianship of Kirsten, then 16. Although Barbara’s will named Vera as guardian, and the trial court agreed that her appointment was in Barbara’s best interests, the Illinois Court of Appeals reversed her appointment, ruling that Kirsten’s father Eric Johnson was able and willing to take custody, and the appointment of a guardian was therefore inappropriate.

In Kirsten Johnson’s case, however, that was not the end of the issue. As a result of an automobile accident when she was nine, Kirsten’s ability to make her own decisions is limited. She not only sustained a serious head injury in that accident, she also has a sizable estate as a result of a lawsuit filed after the accident. She owns the home where she lives (with Vera and several other family members) and an annuity which will make payments totaling over $4 million.

Coincidentally, the Court of Appeals decision directing that Kirsten’s father be given custody was rendered just one month before her eighteenth birthday. Two days after the court order, Vera filed a petition to be appointed guardian of Kirsten under the guardianship system dealing with disabled adults. Eric Johnson objected, arguing that his priority as father should be as strong in adult guardianship cases as it is in minor custody issues.

After the trial judge appointed Vera as guardian, Eric appealed. Once again the Illinois Court of Appeals was faced with the question of who should have control over Kirsten’s future.

The answer on this second trip to the Court of Appeals was different. The judges pointed out that the rights of parents to raise their own children are no longer at issue when the children are of legal age, and the question therefore becomes one of the best interests of the disabled adult. In addition, the guardianship law provides that the wishes of the disabled person be strongly considered in making the choice; Kirsten Johnson was clear that she preferred to live with her aunt Vera. In re: Estate of Johnson, March 2, 1999.

The legal battle over custody of Kirsten Johnson was lengthy, costly and divisive. Both sides leveled accusations of impropriety–Eric Johnson pointed out that the home in which Vera and Kirsten lived had been purchased with Kirsten’s money from Vera, and that Vera paid no rent. He also suggested that Kirsten had been coached to tell court personnel that she preferred to live with her aunt. Vera, on the other hand, pointed out that Eric had been delinquent in child support payments and had not participated in Kirsten’s care before his ex-wife’s death. In the end, however, the central question was what would be in Kirsten’s best interests.

Stay up to date

Subscribe to our Newsletter to get our takes on some of the situations families, seniors, and individuals with disabilities find themselves in. These posts help guide you in the decision making process and point out helpful tips and nuances to take advantage of. Enter your email below to have our entries sent directly to your inbox!

Robert B. Fleming


Robert Fleming is a Fellow of both the American College of Trust and Estate Counsel and the National Academy of Elder Law Attorneys. He has been certified as a Specialist in Estate and Trust Law by the State Bar of Arizona‘s Board of Legal Specialization, and he is also a Certified Elder Law Attorney by the National Elder Law Foundation. Robert has a long history of involvement in local, state and national organizations. He is most proud of his instrumental involvement in the Special Needs Alliance, the premier national organization for lawyers dealing with special needs trusts and planning.

Robert has two adult children, two young grandchildren and a wife of over fifty years. He is devoted to all of them. He is also very fond of Rosalind Franklin (his office companion corgi), and his homebound cat Muninn. He just likes people, their pets and their stories.

Elizabeth N.R. Friman


Elizabeth Noble Rollings Friman is a principal and licensed fiduciary at Fleming & Curti, PLC. Elizabeth enjoys estate planning and helping families navigate trust and probate administrations. She is passionate about the fiduciary work that she performs as a trustee, personal representative, guardian, and conservator. Elizabeth works with CPAs, financial professionals, case managers, and medical providers to tailor solutions to complex family challenges. Elizabeth is often called upon to serve as a neutral party so that families can avoid protracted legal conflict. Elizabeth relies on the expertise of her team at Fleming & Curti, and as the Firm approaches its third decade, she is proud of the culture of care and consideration that the Firm embodies. Finding workable solutions to sensitive and complex family challenges is something that Elizabeth and the Fleming & Curti team do well.

Amy F. Matheson


Amy Farrell Matheson has worked as an attorney at Fleming & Curti since 2006. A member of the Southern Arizona Estate Planning Council, she is primarily responsible for estate planning and probate matters.

Amy graduated from Wellesley College with a double major in political science and English. She is an honors graduate of Suffolk University Law School and has been admitted to practice in Arizona, Massachusetts, New York, and the District of Columbia.

Prior to joining Fleming & Curti, Amy worked for American Public Television in Boston, and with the international trade group at White & Case, LLP, in Washington, D.C.

Amy’s husband, Tom, is an astronomer at NOIRLab and the Head of Time Domain Services, whose main project is ANTARES. Sadly, this does not involve actual time travel. Amy’s twin daughters are high school students; Finn, her Irish Red and White Setter, remains a puppy at heart.

Famous people's wills

Matthew M. Mansour


Matthew is a law clerk who recently earned his law degree from the University of Arizona James E. Rogers College of Law. His undergraduate degree is in psychology from the University of California, Santa Barbara. Matthew has had a passion for advocacy in the Tucson community since his time as a law student representative in the Workers’ Rights Clinic. He also has worked in both the Pima County Attorney’s Office and the Pima County Public Defender’s Office. He enjoys playing basketball, caring for his cat, and listening to audiobooks narrated by the authors.