Ultimately, Chazotsang said a pamphlet will be published and given to each Utah legislator describing the tour, the feedback and what advocates hope to get accomplished. The next meetings are scheduled for 7 p.m. Nov. 4 in Delta at the Main Street Community Center and at 6 p.m. Nov. 10 at the Morgan County Library.

Nielson, who found out early on with her daughter that advocacy is the only way to bring about change, agreed to be the Delta "connection" and organize that event.

"I'm glad we are having these meetings so people can see what we are up against," she said. "It seems to me that to get any services beyond the basics, parents have to get fired up and involved. You can't just sit back."

Nielson recalls the years spent fighting for her daughter and believes the efforts, to a large extent, have shown results.

"People see the disability and that is all they see," Nielson said. "But it is only a section of who she is. It is amazing she has come this far."

Jamie, now 21, is in her second year at Brigham Young University and hopes to have a career working with children with disabilities.

She lives in Provo, where the challenges are not as great

"I did enjoy growing up in a small town, but the disadvantage is that there were not a lot of services offered," Moore said.

Like her mother, she recalls the fight it took to get an automatic door opener installed at the public school.

"It wasn't that the request was extraordinary — it was a reasonable request."

But Moore said because the school had never before dealt with a disability like hers, there was reluctance to make the effort for one student.

"We were surprised they weren't more willing and they took this attitude that it was just for me," she said. "It kind of made me feel like they were putting up this wall to fight against me and taking it personally, simply because we were one of the first people to demand much from them."

Nielson said she could fill up "volumes" with her frustration at trying to get services — and she is well aware of how expensive some of the programs are, as well as the accommodations that need to be made.

"The last thing in the world I wanted to do is depend on other people to help me," she said. "I know these programs cost money and come out of tax dollars, but my family and this child is going to be a contributor to society because of the help we have received — and it was because we were proactive. We had to fight hard to get the help."

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E-mail: amyjoi@desnews.com