Brain injury survivors across the state are looking for better services and area residents could have a say in what those services are.

In an attempt to get information from those suffering from brain injuries and their families, the Brain Injury Association of Colorado conducted a statewide survey asking sufferers what services are needed.

Residents in Routt, Moffat and Rio Blanco counties returned 25 surveys a surprising number for this area, Independent Life Center Director Evelyn Tileston said.

“I was dumbfounded to get so many,” she said. “I was just delighted with the response.”

According to state and national statistics, there are more than 60,000 Coloradans living with long-term disabilities resulting from brain injuries. Each year, about 3,000 more sustain traumatic injury to the brain serious enough to warrant an overnight hospital stay.

Twenty-five years ago, only 20 percent of those suffering from brain injuries survived. Now, the survival rate is more than 60 percent. Though a positive change, the increased survival rate is leaving a legion of brain injury sufferers with no comprehensive services and few programs to help them live a full life.

In many cases, victims and their families are given no information on what to expect or where to go for help.

While collecting surveys, Tileston heard many stories about a brain injury victim being released from the hospital with no guidance for future care, references to other services or instructions on how to deal with the residual effects of brain injury.

“People are telling us they need long-term consulting services or someone to talk to when they have questions,” Tileston said. “They feel lost and they don’t have anywhere to turn.”

In Moffat County, the only option for services is mental health, which many victims avoid because what they are suffering is not a mental illness. Instead, they try to solve their own problems, which can lead to strained relationships and in many cases, divorce, Tileston said.

Survey respondents in the Yampa Valley asked that therapy or other treatments be available on a long-term basis and that services for families respite care or support groups be provided.

“People don’t know how to explain to their families why they are a different person than they used to be,” Tileston said.

And people need help with the paperwork battle and dealing with government offices. One respondent said he couldn’t get his driver’s license because of the red tape and didn’t know how to overcome what seemed like a simple issue.

“There are these kind of repercussions that we just don’t think about when we get a bump on the head. My recommendation to the council is that we need a local brain injury expert or consultant that would be a real expert so that people wouldn’t feel abandoned,” Tileston said.

Tileston is also a member of the Colorado Brain Injury Advisory Council.

After processing the results of the surveys, the Brain Injury Association of Colorado will apply for funding in an attempt to implement suggestions. That funding could fall to individual counties in a myriad of ways, or not.

“If the money doesn’t fall this way, because of the response we got, I’m going to get foundation funds,” Tileston said. “I just can’t forget those people and what they are going through.”

The Brain Injury Association is now surveying professionals who serve people with brain injuries the final step in a three-step data-collecting process. The first step was to interview state agencies.

This first phase of the project is funded by a $100,000 grant from the Colorado Department of Health and Human Services.

The conclusion is hard to define because the responses were so diverse, Brain Injury Association of Colorado Executive Director Helen Kellogg said.

“There are so many areas and the needs are so diversified and most people don’t know what the outcome will be,” she said. “Overall, it seems people think there isn’t public awareness for brain injury issues.”

Eve Heimback, peer advocacy coordinator for the Colorado Brain Injury Advisory Council, said preliminary findings show there is a shortage in transportation services, housing and advocacy.

Services that are available are confusing and not covered by insurance are ranked third and fourth in importance.

“Most people who suffer from brain injuries don’t even know what services are available,” she said.

Preliminary results show that 45 percent of survey respondents in the state were people with brain injuries, 24 percent were family members and 29 percent were service providers.

Statistics are divided by urban and rural response. Many respondents said that living in a rural area limits their services.