• Indiana Centers for Independent Living
• Indiana’s CHOICE Program
• Keeping Loved Ones Safe in Homes and Communities

Programs Developing in Indiana to Keep Loved Ones on the Autism Spectrum Safe in Homes and Communities

Contributed by: Melissa Dubie, Research Associate; Brian Ketzner, Family Mentor; and Marci Wheeler, Social Worker

There has been a recent initiative by federal, national, state, and local groups to look at provisions for individuals with disabilities in the case of a natural disaster or large scale emergency. Attention to safety for this population and their families is finally being addressed with more urgency. By the same token, many families of children on the autism spectrum worry about the safety of their loved ones on a daily basis. Children who run or wander away greatly concern families. Finding ways to foster independence of their children at home and in the community can be scary when the child needs constant monitoring.

The purpose of this article is to make families aware of two programs that will help in their efforts to keep loved ones safe and to provide greater peace of mind for families. The first program is the “First Responder Training Kits” currently being developed by IRCA staff with input from parents, school-based autism mentors, and first responder professionals. Approximately 150 Training Kits will be distributed to all autism-related parent groups and school-based autism teams throughout Indiana in the coming year.

Several school districts in the state of Indiana (e.g., Hamilton-Boone-Madison, Johnson County Special Services, Jay County) have trained police officers in their area over the past few years. In addition, Captain Clinton Crafton, a fireman, has created training for other firefighters in his community of Fishers, Indiana. From their experiences and success stories, there is an urgency to train police officers and firefighters across the state of Indiana. Therefore, the Autism Advocates of Indiana granted funding to the Indiana Resource Center for Autism to create First Responder Training Kits. The kits will include PowerPoint presentations which will present factual information, precautions to look for in the line of duty, and strategies to help individuals on the autism spectrum. In addition, the kit will include explicit lecture notes to accompany the PowerPoint presentations, visual strategies, and information cards. The goal is to provide enough information for parent groups and autism mentors across the state to train emergency responders in their area.

The second, “Project Lifesaver,” is a national program offered through Care Trak based in Illinois. While gathering information for training first responders, IRCA staff began to look closer at the challenges of living with someone who runs. It wasn’t long before the concept of people locators was brought to our attention. Several models are available; some based on Global Position Systems (GPS) satellite technology and some were non-GPS (radio waves). Ultimately this search led to the Care Trak system. This unit is a non-GPS type system which has various advantages. For example, with the GPS transmitters, any obstruction in the sky results in a lost signal. This could be an issue with a child inside a building, in an enclosed space (e.g., culvert), or even inside a vehicle!

The Care Trak system exclusively has been endorsed by the National Sheriff’s Association and is currently growing in popularity through “Project Lifesaver” communities. There are nearly 300 Project Lifesaver communities through 39 states and 10 such communities in Indiana. In these communities, a team of sheriff department personnel, typically three or four, are trained in use of the equipment and a commitment is made to the product through purchase of two tracking systems.

The locator device, which resembles a wrist watch, is then purchased by individuals in the community along with monthly service from the sheriff’s department to change the battery and to check the device. Each device operates on its own specific frequency assigned to the county. Tracking is then done to locate the desired transmitter. The technology was developed by the same company used to track wildlife through dense forests and mountains. Search times are typically under 30 minutes. Current information shows that over 1,800 searches have been completed with 100% success in retrieving individuals that were lost.

Not everyone qualifies for a transmitter. Specific groups are candidates for wearing them. There needs to be some risk of the individual wandering. Individuals with autism that are runners or that have potential to do so are definitely candidates. If you live in a county that is a Project Lifesaver community, simply contacting the sheriff’s department will connect you to the correct resources to lease/purchase the wristband. The charge should be approximately $275 to $300 plus a monthly fee of around $12.00 to $20.00 for battery replacement.

If Care Trak is not prominent in your county, the retrieval equipment and a perimeter alarm are part of a home kit that you can purchase from Care Trak International located in Illinois. The frequency of the personal kit will be different and not able to be tracked by a county system set up on different frequencies. See web address: http://www.caretrak. com/. Your investment for independent equipment from Care Trak is currently $ 1,399.00 per kit. There are several options toward assistance that are suggested as this is not yet covered by Medicaid. Local civic organizations, churches, and the National Family Caregiver Support Program (NFCSP) are a few suggestions besides your insurance company. Either way, contact with the local sheriff’s department is critical. They need to understand the impact Care Trak can have on your community to justify offering the opportunity in your area.

In addition, 911 registries are being created within the state of Indiana. Unfortunately, there is not one format for all counties. Staff at the Indiana Resource Center for Autism are currently working with agencies across the state to understand the basic elements allotted on a 911 registry. For example, not only should one include the individual with autism’s name, address, phone, contact person, and their disability; there also may be an option to include 70 “characters” to describe the individual’s necessary needs. A “character” is counted for each letter, number, space, or punctuation mark. It may be difficult for any parent to describe all their concerns to first responders within 70 “characters” but this may be the only option. Think about what you would say – what is most crucial?

A proactive responsible approach is to contact the appropriate local law enforcement agency and provide information about your family member for first responder reference. To be as effective as possible, this information also needs to be updated as changes occur. Families who have taken the time to plan ahead and provide this information have been able to alleviate stress for everyone involved. We are aware of some parent groups and school-based autism teams that have promoted and even assisted families in this process.

When the IRCA “First Responder Training Kits” are available, we will send out notices to various listservs. If you are not connected with an autism mentor or a parent support group in your region, find out how you can be involved. Contact Marci Wheeler (mwheeler@indiana.edu), Brian Ketzner (bketzner@indiana.edu), or Melissa Dubie (mdubie@indiana.edu) at the Indiana Resource Center for Autism (812-855-6508).

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Dubie, M., Ketzner, B. & Wheeler, M. (2006). Programs developing in Indiana to keep loved ones on the autism spectrum safe in homes and communities. The Reporter, 11(3), 2-3.