Dandy-Walker syndrome

By Jan Biles

THE CAPITAL-JOURNAL

Topeka attorney Margo Burson says Kansas is "forward thinking" when it comes to statutes that protect the rights of individuals with disabilities.

And she should know.

She has been guardian and conservator for her uncle Russell for 19 years. Russell has Dandy-Walker syndrome, a congenital brain malformation that results in motor imbalance, coordination problems and difficulties in learning.

"When I was 13 or 14, I figured out I was next in line (to care for my uncle)," Burson said, adding that her mother took care of Russell until December 1984, when she assumed the responsibility.

Burson said a Kansas statute protecting the rights of those with disabilities has been in effect for at least 38 years. Among its provisions, the statute permits a guardian and conservator to be appointed for an individual with diminished intellectual abilities.

Updates to the statute, most recently in July 2002, allow guardians and conservators to be designated for minors with disabilities who will have a continuing need for assistance when they reach adulthood.

"Previously, (the statute said) you cannot do a guardian/ conservatorship until they turned 18," she said. "They prefer people to wait until age 18 because the duties and powers of a natural parent are more than those of a guardian/conservator."

At age 18, every individual, unless a guardian or conservator has been appointed, has the legal right to make his or her own choices.

A guardian takes on a caretaking role and is responsible for "the health, education, safety, housing, social and physical self of the individual," she said.

However, guardians are restricted from making some decisions, such as:

- Authorizing end-of-life medical treatment, such as do not resuscitate orders, without court approval.

- Consenting to sterilization, amputation or surgery for the individual without court approval.

- Prohibiting the individual's marriage or divorce.

Burson said a conservator is a "money management job" involving the individual's expenses, estate, cash, property and other assets.

"As a conservator, I have the annual obligation to report to the court and share that (financial) information with other family members," she explained.

Burson's uncle Russell, 72, lives in a Shelter Living group home. He has trouble with his balance but can move about using a walker and gait belt. Two and a half years ago, he started participating in the senior services program at TARC, an agency that provides services to those with intellectual and other disabilities. Burson has been a member of TARC's board of directors for 16 years.

"My role is to provide a safety net, not to be a 24-hour provider," Burson said, explaining that she is involved in program planning, quality assurance and medical care and financial decisions.

"A person is a guardian until another is appointed. It's not a job choice like being a social worker or counselor. I have a moral and family obligation. It's not just a job for me."

Jan Biles can be reached at 295-1292 or jan.biles@cjonline.com.

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