Self-advocacy refers to individuals taking control of their own lives and healthcare decisions. It has its roots in the civil rights movement for people with disabilities. Practicing self-advocacy involves being assertive when expressing needs and desires, knowing one's rights, and controlling anger in a reasonable manner. Having experience achieving tasks, observing others' successes, and receiving encouragement can boost self-efficacy and self-advocacy. When meeting with doctors, individuals should write down questions, speak up if anything is unclear, and ask for written information. The Patient Bill of Rights protects individuals' ability to make healthcare decisions.

1. Self-Advocacy and HIV
Dennis Reilly
Employment Specialist
Employment Services
Positive Resource Center
415-777-0333
www.positiveresource.org

2. What Does Self-Advocacy Mean?
 Ones belief in ones ability to succeed at
certain tasks
 If he /she can do it, so can I
 The more I practice the better I become at
a task.
 I can and will take ownership of my
healthcare delivery.

3. Self-Advocacy Movement
 Its roots lie in the civil rights movement
for people with disabilities.
 Refers to people with disabilities taking
control of their own lives including
decision making for their own care in the
medical system.
 The self-advocacy movement is about
people with disabilities speaking up for
themselves.

4. Self-Advocacy in Action
 Assertiveness:
 Those who feel free to express their
feelings, thoughts, and desires.
 Those who know their rights.
 Those who have control over their anger.
It does not mean that they repress this
feeling. It means that they control it for
a moment and then talk about it later in
a reasonable manner.

5. The Roots of Self-Efficacy
 This emphasis started in the psychiatric
field during the 1970s, not only to
advocate for needed changes in the
delivery of services but to encourage
patients to take a more active role in their
own care.
 Since the 1980s, patients have been
encouraged to become participants in
their own care and to become
knowledgeable consumers of the services
of medical care.

6. What is Self-Efficacy?
 The concept of self-efficacy lies at the center
Albert Bandura’s theory, which emphasizes the
role of observational learning and social
experience in the development of personality.
 According to Bandura's theory, people with high
self-efficacy - that is, those who believe they can
perform well - are more likely to view difficult
tasks as something to be mastered rather than
something to be avoided.

7. At the Doctor’s Office or Clinic
 Write down questions before going
to a medical appointment.
 If you don’t understand something,
or if you would like more
information, speak up!
 Ask for information in writing if
needed.
 Bring a friend with you to
appointment.

8. Factors affecting self-Advocacy
 Experience - "Mastery experience"
is the most important factor in
deciding a person's self-efficacy.
 Modeling - “If they can do it, I can
do it as well.”
 Social Persuasions - Social
persuasions relate to
encouragements/discouragements.

9. 5 Steps of Self Advocacy
 Define the issue or problem
clearly
 Ask for what you need
 Take ownership and be solution
focused
 Expect Resistance
 Avoid emotional responses

10. Methods of Self-Assertiveness
 Repeating your requests when coming
upon resistance to something you should
be entitled to.
 Finding some limited truth to agree with
when encountering an opposing persons
view.
 “I” statements.
 Confidence around Self-Assertiveness can
lie in a persons past history of self-
efficacy.

11. 5 P’s of Self Advocacy
Patient Bill of Rights
Patient Safety
Prepared
Positive
Persistent

12. 5 P’s of Self Advocacy
 Patent Bill of Rights: I have the right to
make informed decisions about my
healthcare, to refuse or request services.
 Patient Safety: Is this medication,
procedure, test, safe for me??
 Prepared: I can articulate my concern or
indentify a problem and discuss solutions.

13. 5 P’s of Self Advocacy ( con’t)
 Positive: I know you care about
my well being and safety, how can
we solve this together?
 Persistent: Can I check back with
you to review my meds in 2 weeks.

14. Patient Bill of Rights
 Information for patient about their
treatment
 Access to Emergency care
 Choice of providers
 Taking part in treatment decisions
 Respect and non-discrimination
 Expectation of medical privacy
 Expectation of appropriate care

15. Encountering Resistance
 Expert Authority: I’m the Doctor!
 Dismissive: Its really not that important.
 Deflection: I don’t think we should
review this matter right now.
 Shaming: So you’ve been using the
Internet, don’t believe everything you
read.

16. SF Community Examples of
Activism and Self-Advocacy
 Project Open Hand (http://www.openhand.org/
) - In 1985 in San Francisco, Ruth Brinker, a
retired grandmother, watched a dear friend die of
AIDS. She realized that for many people with
HIV/AIDS, malnutrition was causing death as
much as the illness itself. At that time, no social
service agency was providing meals to those too
weak from AIDS or too impoverished to feed
themselves. Using her experience as a manager
with another food program, Ruth enlisted the help
of her friends, secured a basement kitchen at a
local church and began to serve meals to seven
clients, Project Open Hand was born.

17. SF Community Examples of
Activism and Self-advocacy
 Project Inform (http://www.projectinform.org/)
- In 1985, a group of concerned community
members joined together to start a short-term
"project" at a time when reliable information
about HIV/AIDS and its treatment was nearly
impossible to obtain. Since then Project Inform
has worked to accelerate and facilitate advances
in treatment, recognizing that therapeutic
breakthroughs are only effective if people living
with HIV have access to them. The hope this
philosophy inspires is the core of Project Inform's
integrated approach to treatment education and
advocacy.

18. The Role of Information and
Social Networks.
 Access to information and social
networks allows support for people to
embark on greater self-advocacy, self-
assertiveness and self-efficacy.
 Who / What is your support?

19. Information and Networks that
Support Self-Advocacy
 Friend
 Internet
 Telephone Hotline
 Community Based Organization
 Library
 Media
 Support Group
 Family Member
 Health Care Worker

20. Resources
 www.projectinform.org
 www.Thebody.com
 www.cdc.gov
 www.aidsmeds.com
 www.cdph.ca.gov/programs/AIDS