Rural families struggle to access care for special needs children

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Robin Allen says her son Tyler looks like any other 11-year-old boy who lives in Chippewa Falls. You wouldn’t be able to pick him out between his classmates because “he just looks so normal.”

But Tyler is, in fact, different.

“A doctor told me one time, ‘Tyler’s a unicorn, you read about them in books but yet you never see them,’” said Allen.

Unlike most 11-year-old boys, Tyler takes 13 medications a day and visits a different specialist three to four times a month. His appointments are often all over the state of Wisconsin, but are necessary for Tyler’s various special health needs that include a rare combination of chronic kidney disease and growth hormone deficiency.

“He’s a hugely complex kid, and this area is not equipped for him,” said Allen.

There are 200,000 children in Wisconsin who have special health care needs, and 50,000 of those families have trouble accessing specific health care services, according to the 2009 and 2010 Child and Adolescent Health Measurement Initiative.

Living in Chippewa Falls, Tyler and his family are among those 50,000 families.

Finding health care providers, resource centers and financial support for children with special health care needs is difficult for families living in rural areas because there are fewer resources and travel distances are far. Technology helps connect families to these resources online, but is not a solution for everyone or every situation .

Wynne Cook is the director of the western regional center for Children and Youth with Special Health Care Needs, a program that provides helpful resources to families with children with special needs.

Cook and three other coworkers are responsible for 18 counties in the western region of Wisconsin, and since they are only located in Chippewa County, some families have trouble reaching the center.

“Our challenge is one of access to us. When families find us we do a really good job, we don’t focus on what they can’t get, we try to listen to their story and focus on where they are right now,” said Cook.

A drive to see the resource center or even a health specialist is a burden on most rural families because the cost of gas can add up quickly, and poverty rates are high in these rural areas, according to Cook.

Families must make this drive though because there is a lack of services in rural areas.

According to John Eich of the Wisconsin Office of Rural Health, health centers depend on the population of the area. If there are not enough people to financially support a health service, it is difficult to provide that service. This creates fewer options for families to find providers in an area nearby.

For Tyler, this means there are few specialists in the Chippewa Falls area that can treat his health needs.

“I truly believe not every doctor is for every person, or for every child, and if that doctor isn’t for you, what is your choice?” said Allen. “We’re stuck.”

Families therefore have to seek out care in larger cities such as Madison, Milwaukee, or even Minneapolis. Allen drives Tyler four hours, one way, to Madison notbecause she didn’t find the “right” doctor, but because she found the “only” doctor who would treat Tyler.

“The travel is craziness. You’re in a winter storm, your kid had a procedure that day and he’s throwing up all the way home,” said Allen. “It’s just not a good situation, but it’s the choice you make to keep him alive.”

The state does offer a Medicaid transportation program to cover traveling expenses for these families, but the program now relies on an out-of-state provider, according to Cook.

By using an out-of-state provider to validate travel expenses, the state does not always reimburse families entirely. According  to Cook, there is no local understanding of travel problems, such as construction or storms, that cause a family to take a longer route to a health service not recommended by the transportation provider.

This transportation provider is not the only change seen in health services in the past few years, according to Cook.

Under Gov. Walker’s cuts to education and Medicaid programs, according to Cook, Wisconsin went from being one of the top service providers in the country next to Minnesota, to slowly declining with each year.

“It feels like everything is squeezed and tightened,” said Cook.

Costs act as a barrier to families living in rural areas, but even simple lifestyle differences between urban and rural areas can affect these families as well, according to Amy Lyle of the Children and Youth With Special Health Care Needs program located in Madison.

“Urban dynamic is very powerful and families can feel real intimidated by having to come in. I just try to be mindful about all that,” said Lyle.

Lyle would like to see funding in rural areas to create more services for families, but more importantly, awareness that these services exist.

Pam Ironside is a parent who had such a difficult time finding helpful resources for her daughter with special needs, who is now 27, that she took matters into her own hands and developed a website called PIER of Wisconsin. Ironside now provides information on most every resource for families in person and online.

“I’m more concerned about the people that I don’t know or don’t meet, those are the people I worry about because they aren’t getting the information for these resources,” said Ironside.

According to Cook, it is wrong to assume every family has access to the Internet, but technology in general helps many families discover resources, find the special needs program and even connect with other families for support.

Along with greater awareness to services, Allen would like to see more variety of health services in rural areas to assist Tyler and other families with children with special health needs.

“It would be nice to get back to looking at families individually,” said Allen. “As opposed to everybody’s a cookie cutter.”

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