Building a strong self-advocacy group

Creating a Strong SelfAdvocacy Group
Cindy Bentley,
Tia Nelis,
Jason Endres
Why Do People Join Groups?
To meet people
They have common interests
To learn
There is strength in numbers
To use their skills and talents
To change things
Starting a Self-Advocacy Group
• A group needs:
– A mission or purpose, a common understanding
– Leadership, officers
– Responsibilities and rules
– Goals
– Membership
– Support and assistance
Being a Self-Advocate Means…
• Knowing and speaking up for your rights and the
rights of others
• Supporting one another to build self-confidence
• Being actively involved in decisions that affect
your life and the lives of other people with
• Providing community education regarding issues
affecting the lives of people with disabilities
• Working with others to solve problems
• Advocating for positive change
Reasons Why People Join SelfAdvocacy Groups
There may be different
reasons why people join
a self-advocacy group.
As people learn more,
they may find they are
interested in all different
parts of self-advocacy.
1) Self –advocates are
always learning and
educating others on
important issues they
may be facing, such as:
Important Skills for Self-Advocates
• Help yourself and
• Learn to be a strong
• Speak up
• Speak out
• Solve problems as a
• Make decisions
• Learn about your rights
and responsibilities
• Learn how to vote and
how your government
• Learn how to help in
your community
Self-Advocates Work for Human Rights
and Equality
• To get better services and programs
• To live in the community -- NOT in institutions,
nursing homes, or other segregated places
• To improve human rights and to have dignity
• To teach others to stop discriminating
• To have real jobs in the community with real
• To have community integration
• To make better laws
• To be involved in decisions which effect our lives
Steps for Starting a Self-Advocacy Group
• Find a meeting place
and time that is
accessible and easy for
as many members to
get to as possible
• Make sure that all
group members
understand what selfadvocacy is and why
you are meeting
• Have members choose
at least one personal
goal that is in line with
ideas about selfadvocacy
• Develop goals that
people can work on as a
• Choose goals that are
manageable for the
More Steps for Starting a Self-Advocacy
• Create rules and
responsibilities that
members should learn
and understand
– These may include:
• Officers, Dues
• Voting, Advisors
• Ways to treat one
• Be sure to develop
connections, and a
supportive environment
between group
• Be sure that every
member can participate
to the best of their
Even More Steps for starting a SelfAdvocacy Group
• Develop connections
within your community
• Evaluate your progress
and decide what things
are working well and
what things could be
Vision, Mission & Goals
• Spend time developing:
– Vision statement
– Mission statement
– Plan for the future with goals and objectives
Developing a Mission Statement
• Mission/purpose statement
– What is it?
– Why is it needed?
• Elements of a mission statement:
– Who are we?
– What do we believe?
– What will we do?
– Where will this occur?
– What do we want to accomplish?
Mission Statement Example
We are People First Wisconsin, a statewide self-advocacy organization
for people with disabilities. We are dedicated to enabling people with
disabilities to have our voices heard. In addition to this, the mission of
People First Wisconsin is to:
Educate people with disabilities, including children & youth with
disabilities, about their rights.
Assist people with disabilities to figure out what they want to do
with their lives, and how to make these dreams come true.
Educate the public about the rights and strengths of people with
disabilities, and what they need from the public to be successful.
Help local self-advocacy groups to get started and get stronger.
Help individuals and local self-advocacy groups get to know each
other, learn from each other and work together.
Work toward closing all institutions and making life in the
community a human right for people with disabilities.
• What are goals?
• Why are goals important?
• Elements of a goal
– Concrete Statement
– Objective
– Achievable
– Time-frames
– People Responsible
– Action needed to work on goal
Setting Your Goals
• It is important for selfadvocates to set
realistic goals which
they can achieve
individually and as a
• Here is a process that
groups can use to come
up with goals.
Evaluate needs and
1. Identify needs:
What needs you and other
group member have
2. Identify interests:
Brainstorm what things you
are interested in
accomplishing as a selfadvocacy group
More Setting Your Goals
• Discuss what goals can
be accomplished early
in the group
development, and
which may take more
– Circle and number, in
order, which goals the
group wants to work on
• Write under each goal
ways that these items
can fit into the personal
needs and interests of
the group members
• Outline steps you will
have to take to reach
these goals and identify
what kinds of supports
you will need to these
accomplish goals
Sample Goals
• Learning our rights & to speak up for ourselves
• Educating others about self-advocacy and
disability issues
• Raising money for our group to attend
• Real homes and real jobs
• Making places accessible
• Closing institutions
• Stop funding cuts
• What can you do to make members feel
– Meet with them before the meeting to share the
history & relevant information, and clearly share the
purpose of the group
– Accurate information about date/time & place of
– Do introductions and let them share their story
– Address their support needs
– Encourage their options & comments and involve
them in the discussion
Responsibilities of Members
Attend & participate in meetings
Communicate with members & advisor
Promote group in positive way
Be respectful of all members
Practice confidentiality
Bring concerns to the officers attention
• What is leadership?
• How do you know someone is a good Leader?
• What are the qualities and characteristics of a
• What responsibilities do leaders have?
Responsibility of Officers
Provide leadership for the group
Be a role model for all members
Attend meetings and be an active participant
Fulfill duties and responsibilities of the office
you represent
• Assist the group in problem solving
• Bring new ideas to the group
• Complete all necessary work on time
• Agenda - distribute ahead of time with extra
copies at meeting
• Handouts, including previous meeting minutes
• Introductions
• Conversation & discussion
• Ground rules
• Sign-in sheets
Meeting Agendas
• Topics to be discussed at meeting and may
want to identify who will be responsible for
each topic
• May include meeting schedule with
• End with confirmation of next meeting
Role and Responsibilities of Advisors
• What is the role of an advisor?
– Help with meetings, which can include: scheduling,
writing agendas, keeping minutes, and transportation
– Assist with record keeping
– Share information
– Encouraging all member to participate
– Be respectful, organized, trustworthy, and committed
to the group
– Does not make decisions for the group
– Is not a voting member
Recruiting & Hiring an Advisor
• Who does the advisor work for?
• Clearly define the job tasks and the job
• Discuss expectations:
– Drive own car? Transport People?
– Schedule: hours availability after work hours?
– Assist with personal care?
• Discuss salary and benefits (If any)
• Documentation
• Commitment statement
Evaluating an Advisor
• Job Performance
– Advocacy, independence
– Administrative and
organization duties
• Time management, including
schedules and flexibility
– Keeping to a budget
• Is the advisor meeting the
group’s expectations?
Dealing With Conflict of an Advisor
• What to do when you have conflicts with your
– Talk with the advisor and clearly state the concern
or problem
– Discuss impact of problem
– Discuss possible solutions
• Include a time frame for solution
– Document discussion
• Use job description and evaluation process
• Get advice from an outside source
Tips for Keeping a Self-Advocacy
Group Together Over Time
• Make sure that all members know when and
where the meetings are
– This can include calling people, sending out letters
and calendars, and hanging up notices
• Have self-advocates make contact with their
advisors so everyone knows what their job is
• Have officer meetings
– This is a good time to practice, get ready for
meetings , and to discuss issues
• Find ways to get everyone involved in the
– Give everyone a job and a chance to communicate
• Use accessible materials in meetings
– This could include pictures, writing notes, and
videotapes -- This will help everyone to be on the
same page
• Make sure that things people are discussing
are important to their lives
– This will help motivate members
• For the first few years:
– Evaluate the progress of the group and update
goals every three months
• If any problems arise, face them head on
• Part of self-advocacy is solving problems
• Most importantly:
– Make sure meetings are fun
– Self-Advocacy can include both business and fun
What keeps a group active?
Staying focused, and keeping with the mission
Working together on activities and goals
Holding officer meetings
Convenience & accessibility
– Location, time, reading out loud, using pictures
• Working through conflicts and problems as
they come up
Dealing With Conflict in the Group
• Define the problem or conflict
– Acknowledge differing opinions & ideas
• Determine who is involved
• Hold a meeting and consider using an outside
• Listen to all sides and stick to the facts
• Identify where there is agreement
• Identify compromise and make solutions
Most Importantly

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