Disclosure Decisions: A Guide to Exploring Your Disclosure Preferences

Disclosure Decisions Disclosing Your Invisible Health Condition in Higher Education

A GUIDE TO EXPLORING YOUR DISCLOSURE PREFERENCES

Disclosure Decisions: Disclosing Your Invisible Health Condition in Higher Education

Copyright © 2021 Amy Banko & Brittany Stone Banko, A. & Stone, B.L. (2021). Disclosure Decisions: Disclosing Your Invisible Health Condition in Higher Education. Rutgers University, School of Health Professions, Integrated Employment Institute.

Newark, NJ. Graphic Design by Ifrah Akhtar © Banko, A. & Stone, B.L.(2021). Disclosure Decisions: Disclosing Your Invisible Health Condition in Higher Education.

CONTENTS 04 Disclosing Invisible Health Conditions in College

The Americans with Disabilities Act (5) The Role of Disclosure In Accessing Your ADA Rights (6)

08 Defining Your Disclosure Preferences Past Experiences with Disclosure (8) Who Am I Going To Tell? (11) Identifying Your Strengths and Needs (12)

18 Reasons for Disclosure: Why or Why Not? Decisional Balance (18) Decisional Balance Summary (19) Readiness Ruler Exercise (20) Readiness Ruler Summary (22)

23 Crafting Your Narrative What to Disclose and How to Say It? (23) Your Approach: Deciding When, Where, & How (26) Crafting Your Script (29) Considering the Reactions of Others (31) Reviewing Your Disclosure Conversation (32)

34

Resources

DISCLOSING AN INVISIBLE HEALTH CONDITION IN COLLEGE

Attending college can be an exciting time, one filled with new opportunities. Students will often have the chance to make new friendships, learn about different fields or majors, explore their interests in classes and clubs, all of which support their personal and professional growth. Unfortunately, for an increasing number of students, the experience of an invisible health condition, or non-apparent disability, while attending postsecondary education can significantly disrupt their academic success and satisfaction with their college experience. Students with disabilities have the highest dropout rates compared to the student body as a whole. Now more than ever, colleges and universities are acknowledging the needs of students with invisible disabilities and are answering this need with custom services and supports built to foster academic success. One such support is your college or university’s Accessibility Services.

Accessibility Services assist students with invisible health conditions in identifying their academic support needs and creating individualized reasonable accommodations to reduce academic barriers caused by their health condition. Accommodations have been shown to improve academic performance and enhance a student’s postsecondary education experience. However, an often-cited challenge in obtaining accommodations is the requirement of student disclosure. Disclosure is the act of sharing the presence of a health condition with your college professors, administration, and staff for the purpose of accessing your Americans with Disability Act (ADA) rights of reasonable accommodations. Disclosure can be very overwhelming and anxiety provoking, but your Accessibility Services representative can help you to assess your disclosure preferences. This workbook was designed to support your exploration of disclosure with your Accessibility Services representative so that you can determine whether disclosure is right for you. Additionally, if you choose to disclose, this workbook will support the creation of a disclosure plan that is driven by you and your preferences.

© Banko, A. & Stone, B.L.(2021). Disclosure Decisions: Disclosing Your Invisible Health Condition in Higher Education.

DISCLOSING AN INVISIBLE HEALTH CONDITION IN COLLEGE

s American ies

abilit s i D h t i W

) Act (ADA

The Americans with Disabilities Act (ADA) is a law, originally passed in 1990 and amended in 2008. The ADA prohibits the discrimination of people with disabilities in public domains, the domain of academic institutions is included in this law. The ADA mandates equal access to postsecondary education for students with a disability. Disability in this law is defined as “any person with a health condition that substantially limits one or more major life activities.” Not only does the ADA protect students with health conditions (including mental health) from discrimination but it also allows for reasonable accommodations.

Reasonable accommodations are modifications to how essential requirements are completed, they aim to reduce the barriers a student experiences at school due to their health condition.

© Banko, A. & Stone, B.L.(2021). Disclosure Decisions: Disclosing Your Invisible Health Condition in Higher Education.

DISCLOSING AN INVISIBLE HEALTH CONDITION IN COLLEGE The Role of Disclosure In Accessing Your ADA Rights To access your legal rights of reasonable accommodations, students are required to disclose their health condition to the person or office at their school that oversees disability services. This office is now more commonly titled Accessibility Services.

Disclosure to the Accessibility Services office will often require an application and documentation of your health condition, how your condition impacts you as a student, and suggested accommodations to address those needs. This information is never shared with anyone outside of the Accessibility Services office, as per the law, the information is confidential. If your application is approved by Accessibility Services you will receive a letter of your approved accommodations which will need to be shared with your professors or other school representatives.

It is important to note that every school has a different policy for applying to the Accessibility Services office as well as different procedures for sharing the letter of accommodations with faculty and staff. Many academic institutions require students to submit these letters to their professors or to school representatives to obtain their approved accommodations. Regardless of your school’s policy or procedures, you never have to disclose your confidential health information to anyone outside of Accessibility Services and are only required to disclose the presence of a qualifying health condition to others outside Accessibility Services.

It has often been noted that these exchanges can be anxiety provoking for students, as they are uncertain what to say and are caught off guard when their professor or school representative inquire about their specific health condition, which can happen frequently for students with non-apparent health conditions. This workbook was created to address these pressing needs surrounding disclosure of an invisible health condition. We hope that you can consider if disclosure is right for you, what your disclosure preferences are, and how to carry out your disclosure script or narrative. © Banko, A. & Stone, B.L.(2021). Disclosure Decisions: Disclosing Your Invisible Health Condition in Higher Education.

DISCLOSING AN INVISIBLE HEALTH CONDITION IN COLLEGE Disclosing to Classmates, Friends, and Peers You are never required to disclose to your classmates, school acquaintances, or peers to access your ADA rights. However, there are times when students with invisible health conditions may decide that they would like to share information about the presence of their health condition with their classmates, friends, or school acquaintances. This conversation can be equally as challenging for students who feel uncertain about what to share and how to share it. To this point, we have included a section in this workbook to explore disclosure preferences for these relationships.

We hope you can determine what suits you and your situation best as you use this workbook.

© Banko, A. & Stone, B.L.(2021). Disclosure Decisions: Disclosing Your Invisible Health Condition in Higher Education.

DEFINING YOUR DISCLOSURE PREFERENCES The decision to disclose an invisible health condition may change based on person, situation, and need. As with most important decisions there are both advantages and disadvantages of sharing information. What’s most critical is that the choice you make is intentional, informed, and driven by you and your preferences. In this section you will begin to explore your reasons for disclosure including your past experiences with disclosure, your strengths and needs as they relate to a specific environment, and who to disclose to. Remember, only you decide whether or not to share your personal health information at school.

PAST EXPERIENCES WITH DISCLOSURE By reviewing your past experiences, you can gain insight into your values, interests, strengths, and future disclosure direction. These insights can help you make more informed, intentional choices. The following questions will guide you through your history with disclosure to help shape your decision and approach moving forward.

Describe your past experience disclosing your health condition.

What was your reason for disclosing? Who did you disclose to?

© Banko, A. & Stone, B.L.(2021). Disclosure Decisions: Disclosing Your Invisible Health Condition in Higher Education.

DEFINING YOUR DISCLOSURE PREFERENCES What was positive about this experience? What was negative?

What, if anything, would you want to do differently?

What, if anything, would you want to do again?

© Banko, A. & Stone, B.L.(2021). Disclosure Decisions: Disclosing Your Invisible Health Condition in Higher Education.

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