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What’s the 411 on Disability Disclosure?

by Mary Mazzoni on November 18, 2012

If our kids desire accommodations on the job or in education or training programs after high school – they’ll need to disclose their disability – and request “reasonable accommodations” under the Americans with Disabilities Act (ADA).

This means disability disclosure choices are a major factor in our child’s planning for life after IEPs.

Disability disclosure is always a personal choice. And it should be an informed one.

We need to provide kids with solid information so they can weigh the pros and cons of disability disclosure in particular situations. They’ll need to consider what they want to disclose, to whom, when and how. There’s a lot to think about.

The good news?  There are free youth-friendly resources that our kids can use to make informed choices.

Listening to voices of experience

Before we go any further, let’s listen to young adults share their personal experiences with making disclosure choices. Take time to watch this four minute video. I’ll wait.

These young people know themselves well. They are clear about their personal goals, and they are experienced at making choices and taking action to get what they need. In short – they are self determined.

What’s your perspective?

As parents, teachers and mentors, our perspective about disability disclosure matters. We may have misconceptions, fears, or attitudes about disability and about disclosure that can impact our child’s self determination. We may feel hesitant or uncomfortable engaging in open conversations with our kids about disability and about disclosure.

That’s why the National Collaborative on Workforce and Disability – Youth (NCWD-Y) developed a free resource for us. The 411 on Disability Disclosure Workbook for Families, Educators and Adult Allies is designed to help adults empower kids to make informed choices that impact their self determination.

Knowledge is power

NCWD-Y has published a free workbook designed for youth. The 411 on Disability Disclosure for Youth is based on the premise that disclosure is a very personal choice. It helps kids understand the impact disclosure choices may have on their education, employment, and social lives – so they have the information they need to make their own choices.

The workbook is youth-friendly with interactive exercises. It’s also comprehensive – with 8 sections (each can be downloaded separately). This resource is meant to be used over time – so youth can absorb and consider the information.

There’s a whole lot to think about here. Youth need to be truly heard as they consider these important questions. They appreciate the opportunity to engage in the workbook exercises with a trusted mentor or as part of a group of peers.

An mp3 audio version of the resource can also be downloaded for free here.

And there’s a companion resource that tackles the topic of Cyber Disclosure.

Practice builds confidence

The concept of disclosure is one thing. The act of disclosure is another.

Up till now, we’ve paved the way for our kids to access needed accommodations. How can we expect them to tell strangers about their disability and ask for what they need – without some practice?

Did you notice how comfortable the young adults in the video were sharing their disclosure experiences? This level of skill and confidence only comes with practice.

You and your child should plan ways he can practice disclosure and requesting accommodations. Involve your child’s teacher in this process. Role playing with someone he trusts is often a good starting point. Sometimes kids appreciate viewing video of these role play experiences – so they can decide if they want to change their message or method of communication.

Many kids find participation in self advocacy groups really helpful. Check with local advocacy organizations or Centers for Independent Living to see if  such groups for youth are available in your area.

Next – your child can practice disclosing and requesting accommodations from current teachers (rather than having the accommodations be communicated and arranged for him by adults.)

We can’t expect anyone to learn and apply a skill without practice. Disclosure and self advocacy are skills. Important skills!

Your turn

Have you and your child used any of the resources mentioned in this post? Has your child considered the nuances of self disclosure and practiced disclosure and self advocacy skills? Do you have questions or personal experiences to share?

We’d love to hear from you in the comment section below. Or feel free to email me using the white envelope in the upper sidebar.

Let’s empower our kids to make informed choices and speak for themselves!

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Related post: Reasonable Accommodations under ADA

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