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Rural barriers: Rights of disabled often get short shrift

When Sandy Nielson's 5-year-old daughter was shot through the neck in a hunting accident, it was the beginning of a long struggle for the Delta woman.

It was more than a bullet rendering Jamie Moore with quadriplegia, zapping all movement in her limbs with the exception of her right wrist.

It was more than being a farmer's wife with seven other children at home to look after.

The struggle was entrenched in geography, with distance and isolation serving as the barrier to services her daughter so desperately needed.

"The challenges are great in the rural areas," Nielson said. "As hard as it is for a person with a disability in the urban area, it is many times harder in the rurals because there just aren't the same services."

When Nielson is asked to describe the availability of public transportation while her daughter was growing up, her response is quick.

"There's none."

Home health care?

None.

Automatic doors at schools for people with disabilities?

Not until Nielson waged her battle, going to the school district and insisting on accommodations for her daughter.

The result?

Jamie was provided with a sort of "garage door-style opener" to open the school doors so she could come and go in her wheelchair without the assistance of others.

The other result?

Nielson received a telephone call at home from a school official, who she said told her, "I just want you to know how much money this is costing us."

"The hair on my head just stood up. I will never stop advocating for kids with disabilities. And I told him this wasn't just for Jamie. When she leaves the school, there will be other kids who use it."

Across the state, there are 376,000 people with disabilities, according to numbers provided by the Disability Law Center. While the Wasatch Front has a network of providers and support systems in place to make services accessible, the same is often not true for rural areas, which suffer from lack of transportation, lack of coordinated support and buildings and sidewalks that are inaccessible. People with disabilities often face barriers when it comes to employment and getting an education. They also frequently encounter discrimination, especially if mental-health issues are involved.

To that end, the Disability Law Center launched its ambitious "Listen and Learn Tour," this year. The tour has held meetings in 19 rural counties so far — from Randolph in the north to La Verkin in the south.

Center director Fraser Nelson said discrimination against people with disabilities has become the last acceptable marginalization of a whole segment of society — a marginalization often compounded in rural areas.

"What we have found in the tour is the acuity of that experience is even more so there than in urban areas — that there is this sense of 'otherness' and lack of self-advocacy. It all comes together to present challenges."

The latest census numbers show that some of Utah's most rural areas have the highest percentage of people with disabilities, even more so than the urbanized Wasatch Front.

Carbon County, for example, has 21 percent of its population suffering from a disability, compared to Utah County with 10 percent.

The highest is San Juan County, with 23 percent. Contrast that to Salt Lake County with 14 percent and Davis with 11 percent.

At each of the "Listen and Learn" meetings, several themes emerged, including:

Very limited, inadequate, poor quality or poorly coordinated services are a concern.

Individuals want training in self-advocacy, especially special education and access to resources.

Rural Utahns with disabilities face enormous barriers to employment.

Discrimination continues to be felt, notably in education, housing, employment and certain services.

While people appreciated the meetings, they were skeptical the center will follow through.

"The message we're getting is 'Don't underestimate us but don't forget us,'" Nelson said. "We can't sit on our laurels and assume they are going to call us."

The outreach then is intended to tap locals interested in advocacy, train them on rights associated with special education, housing, job training and other arenas and set them loose with guidance. A nearly $12,000 grant from the Jerome S. and Grace H. Murray Foundation will help pay for the follow-up training.

"It's very important for the rural community to hold us accountable in this effort," Nelson said.

While the center has established outreach efforts in institutions such as the prison or the Utah State Hospital, Nelson said the tour represents the first time the center has reached out to this extent in the most remote locations in the state.

"Instead of telling people, 'you come here,' we are saying we will go to them and get our comeuppance locally. "

To that end, the center brought on Khando Chazotsang to head up the coordination of the tour, which she said will ultimately result in the formation of four regional councils.

Chazotsang spends her days reaching out to people in rural areas and arranging the town meetings far enough in advance in hopes of getting ample participation.

"Each of these counties have to be visited. If we don't, there is no credibility to what we do."

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."


E-mail: amyjoi@desnews.com