Parents urge autism incident registry funding

Medical service providers, dozens of disabled Utahns and parents of autistic children spent Monday afternoon urging lawmakers to "do the right thing" and fully fund this year's public assistance budget requests.

Numerous and often emotional pleas for money to underwrite the state's various early intervention programs for infants born with disabilities and repeated calls to begin an autism incident registry filled most of the time of what is annually the longest committee meeting in a general Legislative session.

Gov. Jon Huntsman Jr. has recommended $14 million in appropriations for Human Services in his 2009 proposed budget. A fraction of those expenditures dominated the three-hour discussion, which was hurried along by a time clock that allowed each speaker 90 seconds to make his point. In particular were pleas for continuing funding to track an autism registry.

There were as many people who wanted to tell lawmakers thanks for money appropriated in past years as those who wanted budgets expanded. At least a dozen couples told lawmakers their autistic children had learned to interact the past year only because they had expert help provided through state funding.

"Please remember as you consider the requests made today that these are some of the faces you are being asked to help," said Jenny Simmons, who held her 7-year-old son, Jack, on her lap. "They are real people facing overwhelming situations and a little helps many times over ease that burden."

One parent, John Kirton, whose family of six autistic children is profiled in this week's issue of People magazine and who will appear on the ABC's Good Morning America show Wednesday, told lawmakers that despite remarkable progress with autism in the state, the waiting list to get into the Pingree school for autistic children is 300 families long and growing.

A parent of a 12-year-old autistic daughter told lawmakers that having a disabled child is like going through life with a raw egg in your pocket. "You can take care of everything and do all the errands in your life, but you have to be very careful," said Colleen Kenney. "If you do something wrong, life can become very messy in a hurry. If you are able to get some help it's like getting an egg carton."

Since 1980, the number of autism cases has gone up 20 fold. The causes of autism are not known and there is no cure.

Carmen Pingree, the namesake of the school for autistic children, near the University of Utah, told lawmakers that funding for a registry is a critical first step to getting a handle on the number of cases Utah can expect in the next few years.