By: Karla Antonelli & Anne Steverson, Mississippi State University
Authors Note
The contents of this report were developed under a grant from the U.S. Department of Health and Human Services, NIDILRR grant 90RT5040-01-00. However, these contents do not necessarily represent the policy of the Department of Health and Human Services and should not indicate endorsement by the Federal Government.
Correspondence concerning this article should be addressed to Karla Antonelli, NRTC on Blindness and Low Vision, PO Box 6189, Mississippi State, MS 37962. Telephone: 662-325-2001. Email: kantonelli@colled.msstate.edu
4to24 App: Transition Guidance for Parents
If you’re traveling new ground, guideposts from a friend who has been there can be invaluable. Many families of a child who has CHARGE syndrome may find themselves in this situation, having new territory to navigate. The hearing and vision impairments associated with CHARGE syndrome are defined by the Individuals with Disabilities Education Act (IDEA) as low incidence disabilities – meaning that personnel with highly specialized skills and knowledge are needed for children with those impairments to receive early intervention services or a free appropriate public education.1 A low incidence disability also means that resources and information for families can often be limited or hard to find.
With this in mind, the National Research and Training Center on Blindness and Low Vision created an app for parents of children with both hearing and visual impairments called 4to24. As the name suggests, it is for parents whose child is between ages 4 and 24. Its purpose is to provide information, resources, and suggested activities that parents can use to help plan for and navigate their child’s transition from youth to adulthood and all that that entails.
Before creating 4to24, we met with some parents of youth who are deaf-blind – some of whom had additional disabilities – and asked about their current sources for transition information and the overall idea of the app. We learned that most of these families felt unsupported and lacked information or guidance about what to do after their child graduated high school. One parent commented, “Really, we don’t have any transition planning right now.” Others reported that if they did have information, it was from their own research, “We’re the ones that have had to seek it out.” For these families, the concept of 4to24 would be a resource to help them brainstorm how to help their child prepare for the next stages of life, whatever that may look like.
Armed with this information, we partnered with experts in the education and transition fields for deaf-blind youth, who wrote the content for the app. We then asked a different set of field experts to review and validate the content. Parents receive this expert-vetted content in modules that arrive over time based on the youth’s age so that information is compatible with the child’s current life stage. Each module’s activities are flexible for ability level so that all families can benefit from the information. Content touches on topics like how to develop and support communication, ideas for documenting and advocating for the youth’s personal preferences and strengths, and building skills in areas like mobility and dexterity. 4to24 also emphasizes building community supports and engagement and planning for the future. In an early test of the app with parents, one parent said about 4to24: “It’s a cool resource, and we hadn’t found anything out there like this in the past… that provides information like this for families with children who have these complex medical issues.”
The 4to24 app is a free resource for parents in the Google Play and Apple stores. It is also available as a web application at 4to24.org.
1Individuals With Disabilities Education Act, 20 U.S.C. § 1400 (2004).
