Mom Chats and Letters from Kids: Wyoming Team Provides Support to Families with Hearing Loss

A team of dedicated professionals and parents is reaching families across a remote state

January 14, 2013
by Kristina Grifantini

In Wyoming, a vast state with a population of only about 550,000, the Early Hearing Detection and Intervention (EHDI) Program faces a challenge particular to rural areas: families whose children are diagnosed with hearing loss sometimes have a hard time getting the support they need.

“If we can get kids connected with the relevant early intervention services, those kids can enter kindergarten with age-appropriate skills, but the clock is ticking,” says Susan Fischer, a speech language pathologist and clinic coordinator at the Wyoming EHDI program. “The window closes very quickly.”

Through NICHQ’s national quality improvement effort, dubbed Improving Hearing Screening and Intervention Systems (IHSIS), teams learn quality improvement methods to make systematic change. The Wyoming EHDI office, Fischer, and parents from the nonprofit Hands & Voices, have been working together since last summer to streamline care and early intervention access for babies identified with hearing loss by testing different ways to provide families support.

A key part of the team’s early success has been working with parent partners, who provide unique insight into what works and what doesn’t when trying to help newly diagnosed families. Wendy Hewitt, executive director of Wyoming Families for Hands & Voices and IHSIS parent partner, says that, too often, parents run into obstacles that make it hard to get the services they need. When her child was first identified as having hearing loss, her pediatrician gave her some information which her family didn’t understand right away.

“Because of that misunderstanding my son could have fallen behind,” says Hewitt. “Now I want to help parents get the information they need and help the professionals know what information they need to give.”

Parent partner Kim Reimann (bottom left) with daughter Gabi (top left), who has hearing loss, and her other daughter Natalie and son Curtis (right). Credit: Courtesy of Kim Reimann.

Parent-to-parent support
After IHSIS parent partners expressed how difficult the early diagnosis can be for a family, the Wyoming team decided to send a parent partner along with early interventionists on a home visit.

Kim Reimann, assistant director of the Wyoming Families for Hands & Voices branch went on a family visit in January. She had a casual conversation with the mom about cochlear implants and hearing aids while the occupational therapist and the speech pathologist worked with the child. She will visit again with the same family later this month, and visit another family in the near future. So far, the family and outside speech pathologist both said the parent visit was helpful.

“I’ve seen how successful it is when parents are going through initial diagnosis to talk to another parent who can say, ‘I’ve been there, done that, now my child is in elementary school doing well,’” says Fischer. “The support that a fellow parent can provide is really invaluable. As a practitioner, I can’t provide that kind of support because I don’t have a child with a hearing loss.”

Hewitt, who also plans to participate in family visits adds, “Meeting face-to-face has more of an impact. You have more of a relationship with parents and they’re more likely to call and ask questions.”

A letter of kinship
The IHSIS team also tested sending families of newly diagnosed children personal letters. The idea was inspired from an encounter with a teenage mother whose baby was just diagnosed with severe-to-profound hearing loss in both ears.

Click to view full letter
Parent partner Kim Reimann’s daughter, Gabi, wrote a letter to a family whose infant has hearing loss. The team will get feedback on whether personal letters like these are helpful during the initial diagnosis process.
Credit: Courtesy of the Wyoming IHSIS Team

“This mom came in and she was so sad,” says Nancy Pajak, the Wyoming EHDI program director. “We talked with her as well as the baby’s grandmother the best we could. After the family went home, Kim decided that writing a letter to the mom might be a better way to reach out. Then Kim’s daughter who has hearing loss decided she wanted to write a letter too.”

Reimann says the main goal of the letter is to provide support to families and let them know that it’s hard at first but things will be OK. “In the beginning, I wondered how will my daughter grow up—how will she communicate; will she be able to swim or drive or do all of these other things? It’s nice to hear from someone who’s lived through it,” says Reimann. (See Reimann’s 13-year-old daughter’s letter to newly diagnosed families, on the right.)

The team plans to test the parent letter on a larger scale, sending it out to families and getting feedback on whether it helps motivate parents to take action.

With the support of NICHQ, the team will continue to test, adjust and spread changes and gather feedback to improve processes that benefit families. In February, Reimann plans to do a presentation for physicians at a local hospital. The presentation will focus on aspects of early intervention and how to help to improve outcomes for children diagnosed with hearing loss from a parent’s perspective. Fischer has started to do online video conferencing as an extra support for families and their early interventionists to ask questions. The team has also created fax-back forms so that hospitals and doctors can keep the EHDI office informed of children’s progress.

“The NICHQ quality improvement process is very doable in this fast-paced world we have,” says Pajack. “We don’t have to start by building a mountain—all we have to do is make a tiny molehill, see how it goes and build off of that.”