When is the “Right” Time

When Should Families Meet Deaf & Hard of Hearing Adults on the Journey?

By Karen Putz, H&V Headquarters

For many years, I worked in early intervention as a Deaf Mentor. I was initially credentialed as a Developmental Therapist. As a Deaf Mentor, I received training under SKI-HI.

The way the EHDI system was set up at that time was a “choice” system. Parents had to first choose a communication preference–and then the system would set up services around that choice. If the coordinators did not know me or did not know/understand about Deaf Mentors, they rarely offered the Deaf Mentor option for families. There were times when a family would request to learn “sign language” and then inquire about obtaining services. It was usually then that I was called in to connect with the family.

In many cases, I was the first Deaf/Hard of Hearing person that the family ever met besides their own child.

Deaf/HH Mentor services were an “opt in” service and if it was offered, many families declined. Sometimes they had a child who was diagnosed hard of hearing, or they chose a Listening and Spoken Language or Cued English approach. Sometimes they simply weren’t ready to meet a Deaf/Hard of Hearing adult or did not see the value in it while at the beginning stages of understanding their new journey. Sometimes early intervention providers did not encourage this connection or understand the value themselves.

When is the right time for families to be introduced to Deaf/Hard of Hearing Adult to Family support? Why not make it as easy as possible for families to connect with D/HH Adults Mentor/Role Models any time in their journey? 

Here’s the thing…parents aren’t always ready to meet an audiologist or a speech therapist, but the system is set up so that those visits have great priority.

Can you imagine telling a family, “When you’re ready, you can set up an appointment with an audiologist when your baby is about eight months old. Then, you can start exploring some auditory options.”

Or…

“You really don’t need to meet a speech therapist until your baby is around 13 months old. By then you will have had time to adjust to this journey and be ready to explore speech sounds.”

At one children’s hospital, Deaf and Hard of Hearing adults are infused into the system of support right from diagnosis. On their staff are a  pastor, a speech therapist, an audiologist or two, and a family support person who are all Deaf/Hard of Hearing. Because of this families have an opportunity right from the start to see Deaf/Hard of hearing adults as a part of a system of support–and not as a later addition. Certainly, there is a difference in meeting a family as a mentor or meeting a family as a speech-language pathologist; but representation does matter at all levels.

One of the biggest benefits of having Deaf/Hard of Hearing Adult to Family support as an infused model right from the start is the impact it has on the family’s grief process. Time and time again, families share a new sense of optimism and hope after meeting a Deaf/Hard of Hearing person who is trained in giving support without bias.

The biggest challenge that EHDI systems face is that there is no “standard of service” among the different states when it comes to providing Deaf/Hard of Hearing Adult to Family support. Whether or not a family receives Deaf/Hard of Hearing Adult to Family support often depends on what each state offers–and this can also vary by urban and rural locations within the state itself.

To understand the different service models, the Hands & Voices FL3 Center created DHH Guidelines: Guidelines for Deaf and Hard of Hearing Mentor/ Guide/Role Model Programs. Here’s a quick description of the different service models.

Deaf Mentors

The term “Deaf Mentor” or “deaf mentor” is a trademarked title referring to the staff using the Deaf Mentor Curriculum provided by the SKI-HI Institute. SKI-HI Deaf Mentors are adults who are Deaf or Hard of Hearing themselves and may be staff in the SKI-HI “Snapshots” Program. This program provides a series of visits (up to 6) to help the family understand more about life as a deaf or hard of hearing individual, including their life story, adaptations that are a part of a deaf person’s life, and things that are unique to being deaf or hard of hearing. The families have the option to meet as many Deaf Mentors as they like. If families have a desire to learn and use American Sign Language and learn more about the Deaf Community, then families can receive SKI-HI Deaf Mentor services on an ongoing basis, typically weekly. A SKI-HI Deaf Mentor is trained in ASL instruction and interacts with the child and family using ASL, shows family members how to use ASL through informal interaction and formal ASL lessons, teaches the family about Deaf Culture and introduces them to the local Deaf Community.

Deaf/Hard of Hearing Adult Role Models

These are adult role models who are deaf and hard of hearing. They may communicate via Listening and Spoken Language (LSL), Cued Speech/Cued English, English-based sign and/or American Sign Language. They provide children who are deaf and hard of hearing and their families with insight into life experiences as an adult who is deaf or hard of hearing. The full range of hearing levels, communication modalities, technology use, educational placement are ideal for diverse staffing of a comprehensive adult role model program. Role models typically are more likely to engage with a family on a short-term basis. Some states have specialized programs like the Shared Reading Project.

Deaf/Hard of Hearing Guides

A program of Hands & Voices, Guide by Your Side (GBYS) – D/HH Guides are a diverse group of D/HH adults who compliment the work of Parent Guides by working alongside them. D/ HH Guides share with children and families their unique life experiences, use of technology, how they navigate social situations, how they developed their personal identity, etc. D/HH Guides undergo the similar training as Hands & Voices Parent Guides and are often trained together, with benefits for both Guide services. All Guides are under the supervision of a local GBYS Coordinator as well as provided opportunities for ongoing training and networking through Hands & Voices Headquarters.

Deaf and Hard of Hearing adults are everywhere. They are doctors, lawyers, pilots, nurses, engineers, teachers, vets, fire chiefs, paramedics, biologists, retailers, entrepreneurs, doulas, authors, business owners, CEOs, scientists, and more.

If we have to ask the question, “When is the right time to introduce Deaf/Hard of Hearing Adult to Family Support services,” we as stakeholders in the EHDI system are not yet at the point in which we recognize the value and impact that Deaf/Hard of Hearing adults have on the family journey.

Once we infuse a system–we no longer have to even ask the question of “when is the right time.”  ~

Editor’s note: To learn more about DHH Adult to Family support, visit: https://www.handsandvoices.org/fl3/fl3-docs/DHH-Guidelines.pdf