North Carolina Commission on Volunteerism and Community Service Presents: Disability Disclosure Ray RiordanChad Gobert July 25 th, 2012

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Objectives 1.Define disclosure and its importance in disability inclusion. 2.Describe reasons people do or do not disclose. 3.Upon discussing the impacts of non-disclosure, identify physical and programmatic elements of a program which may contribute to non-disclosure. 4.Incorporate principles of universal design in your program to make members or volunteers more comfortable to disclose. 5.Take appropriate action when a member or volunteer makes a disclosure.

1. What is self-disclosure?

Self-disclosure refers to your communicating information about yourself and may involve: 1.Your values, beliefs, and desires 2.Your behavior 3.Your self-qualities or characteristics Definition of Disclosure

Known to SelfUnknown to Self Known to Others Open Pane Known to self and others Blind Pane Blind to self, seen by others Unknown to Others Hidden Pane Open to self, hidden from others Unknown Pane Unknown to self and others Johari Window The Johari window is a way of showing how much information you and others know about yourself.

Why might we share things with others we might otherwise keep in the “Hidden Pane”? Known to SelfUnknown to Self Known to Others Open Pane Known to self and others Blind Pane Blind to self, seen by others Unknown to Others Hidden Pane Open to self, hidden from others Unknown Pane Unknown to self and others

Benefits to members – Individual service performance – Serving with others Comfort in asking for reasonable accommodations Benefits to program Disclosure and Member Success

Social isolation –Did not get close to people for fear of personal questions Feel compelled to misrepresent –Explained medical appointments by saying she was part of a nutritional study –One individual told others she had a different diagnosis Unable to request accommodations Report less support than people who did disclose Stress of keeping the secret Impact of non-disclosure

In a typical relationship, the sooner an individual engages in self-disclosure, the better the relationship will be. True or False? No- that’s false Yes- that’s true WHY?

Culture of program environment –“Gossipy” –Excessively competitive –Racially insensitive Fear of potential reactions Refusal by others to share equipment Not relevant Stigma associated with disability Need to disclose to other people outside of service program first 2. Why not simply disclose?

How Willing to Self-Disclose Are You? Rate on a scale of 1 – 5 the following questions: 1. What are your hobbies? 2. What is your worst fear? 3. What aspects of your personality do you dislike? 4. What is your level of income? 5 = would definitely self-disclose 4 = would probably self-disclose 3 = don’t know 2 = would probably not self-disclose 1 = would definitely not self-disclose

What are some reasons people end up having to self-disclose?

3. Physical and Programmatic Accessibility of Programs Examples of Potential Barriers: Entrance/exit to site Moving around environment Accessibility of materials Treatment of staff and peers

Accessible Accessible refers to the degree to which an environment, product, or tool is available to as many people as possible. For recipients or beneficiaries of federal funds, this can represent the minimum legal requirement so a person with a disability can use the environment. Example: Entrance to a building Distinguishing Accessible

Accessible: An accessible entrance meets the minimum requirements of the law. However, there is- One entrance for people who can use this door. Another, accessible entrance for people who cannot use this door.

Universally Designed Accessible Universally Designed products and environments are to be made usable by all people, to the greatest extent possible, without the need for adaptation or specialized design. -Center for Universal Design at NC State Example: Entrance to a building Distinguishing Accessible and Universally Designed

Universally Designed: Equal access to an environment, product, or tool. Please see this link in our Train-the-Trainer Manual to learn about the Seven Principles of Universal Design:

1. Equitable Use 2. Flexibility in Use 3. Simple and Intuitive Use 4. Perceptible Information 5. Tolerance for Error 6. Low Physical Effort 7.Size and Space for Approach and Use Principles of Universal Design Please see this link in our Train-the-Trainer Manual to learn about the Seven Principles of Universal Design:

Fully Inclusive Universally Designed Accessible The goal is to create a Fully Inclusive environment. A fully inclusive environment refers to the seamless use of the environment by all people, regardless of diversity or disability. It also refers to the type of culture that is welcoming to all participants. Example: AmeriCorps event Distinguishing Accessible, Universally Designed, and Fully Inclusive

Fully Inclusive: AmeriCorps registration packet includes: An inclusive statement Printed materials in at least 14pt font A CD to make materials available in electronic format

Fully Inclusive Universally Designed Accessible Reasonable Accommodation refers to the technology, services, and changes in policy, procedures, and the environment that enable individuals with disabilities to perform essential functions or to equally participate in events and programs. Accommodations are limited only by creativity. Accommodations will vary depending on the individual need, the disability, and/or the type of program. Reasonable Accommodations Different Environments and the Need for Reasonable Accommodations

3. Physical and Programmatic Accessibility of Programs Design Your Program to Overcome Potential Barriers The physical building Designing a barrier-free space Making electronic, paper documents accessible Culture of inclusion

When are you most likely to self-disclose voluntarily? Open Question:

Incorporating “person-first” language into the program’s culture. Instead of using “the” anything (the blind, the disabled), recognize the individual first: Person with a disability. 4. Promoting Disclosure in Your Program Please see for more information on person-first language.

Products and interior decorations portray images of people with disabilities. Members and volunteers can identify that people with disabilities are welcome in the program. 4. Promoting Disclosure in Your Program Please see for free inclusive photos of members and volunteers from all streams of service.

Make the availability of reasonable accommodations openly posted and publicized. “Qualified individuals with disabilities and those from diverse backgrounds are strongly encouraged to apply.” “We provide reasonable accommodations for qualified individuals and conduct all activities in fully accessible settings.” 4. Promoting Disclosure in Your Program

Individuals with disabilities are full participants in program and service activities. Ex. An open house recruitment event: –Is the environment open, clutter-free? –If conducted on a second floor, is their equal access? People will offer feedback more freely if their perspective is valued. 4. Promoting Disclosure in Your Program Please see for guidelines on accessibility for grantees.

Regularly inquire about the experience and satisfaction of all members and volunteers. A universal design strategy, programs can receive effective feedback from all members about how to make the program better. People will offer feedback more freely if their perspective is valued. 4. Promoting Disclosure in Your Program

Making sure expectations for individuals with disabilities are the same as for others. When providing feedback to participants in the program, treat all members equally. 4. Promoting Disclosure in Your Program Please see for management and retention information and requesting reasonable accommodations.

Practice the skills of effective and active listening Support and reinforce the discloser Keep the disclosures confidential 5. Guidelines for Responding to Self-Disclosure

Emily is an AmeriCorps member who is part of a small but competitive team of members working on a fundraising project. She does not disclose her chronic fatigue syndrome, even when she begins having attendance problems that she believes are related. After she arrives late five times in two weeks, her supervisor discusses the attendance problems with her, but two days later she is a half hour late again. Emily is a great asset to the team, and her supervisor doesn’t want to lose her, but it seems unfair to the other members to let Emily’s tardiness slip. Case Study

1. What should Emily’s manager do? 2. How could changes be made that would benefit Emily and everyone else in the program? 3. What similar changes could you make in your program? Questions:

Ginger is a retired teacher who loves kids. She volunteers as a Foster Grandparent at a local shelter for battered women, spending time with the children who are staying there. Ginger’s eyesight is slowly getting worse, and she worries that soon she will not be able to read to the children. She doesn’t want to tell her supervisor because she doesn’t want to stop volunteering, but she also wants to make sure the children she works with have the support they need. Case Study

1. What should Ginger’s manager do? 2. How could changes be made that would benefit Ginger and everyone else in the program? 3. What similar changes could you make in your program? Questions:

Things to Remember about Disclosure: It is up to the individual to disclose a disability. The amount of information provided about a disability is up to the individual. If an individual discloses a disability, that information must be maintained confidentially and cannot be disclosed to others.

Things to Remember about Disclosure: May share information regarding disabilities if member provides approval in writing or alternative verifiable method. Human Resource personnel and supervisors are trained/informed in the confidentiality of medical, disability and accommodation-related information.

With regard to confidentiality, can anyone share a success story about members disclosing in their own program? Discussion and Questions

Objectives 1.Define disclosure and its importance in disability inclusion. 2.Describe reasons people do or do not disclose. 3.Upon discussing the impacts of non-disclosure, identify physical and programmatic elements of a program which may contribute to non-disclosure. 4.Incorporate principles of universal design in your program to make members or volunteers more comfortable to disclose. 5.Take appropriate action when a member or volunteer makes a disclosure.

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Click to edit Master title style Contact Information: National Service Inclusion Project [V/TTY] Chad Gobert