Posted on March 7, 2019

By Cathy Yadamec

For organizations that provide supports and for people who receive those supports, listening to and learning from the experts is important. The real experts are the people who have the experience of being a person with a disability, navigating life in a complicated service system. People who have disabilities can be great self-advocates and advocates for others. Organizations that support people have the opportunity to help build this self-advocacy movement. To accomplish this, there are many important things to remember.

For organizations that are promoting self-advocacy, whether you are developing a new group, enhancing an existing group, or encouraging individuals to grow as self-advocates in the daily course of providing supports, the following suggestions might guide you in working together with the people who receive services. These ideas will help with developing strong self-advocates who can work to improve their own lives, the lives of others with disabilities, and the quality of your services and supports. To explore this issue further, we reached out to different stakeholders for a diverse perspective about self-advocacy. They share very specific and actionable steps that you can use to advance self-advocacy efforts.

Equipping A Self-Advocacy Group To Be Successful

By Leanne Mull, CQL Quality Enhancement Specialist

As an advisor for an organization-based advocacy group, my favorite experience occurred when I was running late for a scheduled meeting. When I arrived – prepared to page the group members to the conference room to begin – I opened the conference room door, and they had started the meeting without me. The entire group was together, the President had started the meeting and all I had to do was listen. They put into practice everything they had learned and began the meeting, as planned. This is not where we started, this took place nine years after the group was formed.

Getting to this place took time, training, and investment by the organization. When starting or further developing an organization-based advocacy group, these are some things to keep in mind:

• People who work at the organization need to know that executive leadership supports self-advocacy.
• Ask the people who receive services if they are interested in self-advocacy and involve them in every aspect of the creation of the group. This will include deciding on a name, how often to meet, where to meet, and choosing an advisor.
• Understand that becoming a self-advocate takes education, experience, exposure, courage, and support. Some people are finding their voice. When you are starting the group, it is important to make education a part of every meeting. Don’t worry, there are lots of resources available (see below)!
• Remember that self-advocacy is a movement, not a program. Decide with the group, the level of interest in self-advocacy at the state or federal level. There are opportunities to join larger self-advocacy groups, like SABE or People First.
• Encourage different levels of participation within the group. Some people may become the core group while others only want to attend events. Meet people where they are.
• Be prepared for the group to advocate for things that the organization may not agree with as they grow in their self-advocacy skills.
• Do not let self-advocacy rest with one staff member. The more staff who are involved and on board with the organization’s support of self-advocacy, the easier transitions will be when staff change roles within the organization or leave all together.
• Finally, don’t wait nine years to be late to a meeting!

Advice From A Nationally-Recognized Self-Advocate

Tia Nelis is a recognized leader in the self-advocacy movement. Her local experiences with advocating for herself and others opened up the opportunity to be involved in state, national, and international advocacy efforts.

Tia shares her lessons learned and advice for self-advocates and organizations interested in promoting self-advocacy with her Top 10 suggestions:

1. Remember whose group it is. Don’t let others take over your group.
2. After you become a leader, be sure that you share your skills with others.
3. Don’t be afraid to ask for support. It is okay. Everyone needs support.
4. It is okay to make mistakes.
5. If you see someone sitting alone in the meeting, go up to them and ask how they are.
6. You can’t do everything. Look at all the things you are asked to do, then look at your schedule to see if you can take it on. Don’t be afraid to say yes or no!
7. Don’t do all the stuff people ask the group to do for free. The group should get paid for their work.
8. Being a self-advocate means first you learn how to speak up. Then help others speak up for things that are important to people with disabilities.
9. Most of all, work hard and have fun!
10. This is about your life, and not about a program.

Self-Advocacy In Motion Through ‘The Incredible Angels’

By Beckie Amidon Austin, Arc of Steuben Director of Community Supports

The Self-Advocacy Group from the Arc of Steuben, The Incredible Angels, has been in existence for many years. About three years ago, I became the staff advisor. At that time, the focus of the group was on organizing and hosting 3 to 4 dances per year with some advocacy efforts in the mix.

Over the last three years, this balance flipped. The group has now shifted to a self-advocate focus, with some dances and other activities thrown in. In the process, the group did thin out a little, but the ones that stayed have worked hard to learn how to run their own meetings, plan their own events, and take part in local and state advocacy activities. The dances have become fundraisers so that the members can participate in conferences through SANYS (Self-Advocates of New York State), as well as the Collaborative, a group of several chapters of The Arc in Central to Western New York.

Last year, several of the members did a presentation at the same conference that focused on how to use CQL’s Rights Conversation Cards to educate people we support and staff on rights and responsibilities. They took a scaled down version of this to the Annual Dinner for the Arc of Steuben.

The group’s first experience speaking in front of others involved a joint presentation with other local agencies at the Western Region SANYS Conference. The presentation was a role-play about how to contact and speak to your legislative representatives about issues that impact people with disabilities. Four members of the Incredible Angels took part in that presentation.

Over the last year, several self-advocates worked to be more active within our agency. They recognized that the Arc of Steuben provides services to people with intellectual and developmental disabilities and that they should be a part of the everyday workings of the agency. Two of the advocates have become instructors for the Rights and Responsibilities training. The two people, along with the advisor and a second staff instructor, take turns providing this monthly training to new staff at orientation.

Five members of the Self-Advocacy group took part in the CQL Accreditation stakeholder meetings. They then reported on this experience to the group as a whole. This generated a lot of conversation about how the group can be more involved in agency decisions. Since then, a member has joined the Recruitment and Retention Committee, and another has started assisting with the Person-Centered Planning training provided to all new staff.

2019 is going to be a year of even more growth. The group has reached out to the agency to see what other committees exist within the agency and how they can ensure that a person supported is represented on those committees. In addition, they are excited for the formation of an Advisory Council this year. This will be a group of self-advocates who will advise on and review Agency policies and procedures, as well as assist in the development of the policies and procedures.

Additional Resources To Promote Self-Advocacy

• Everyone Has Rights! Training
  In this session, Everyone Has Rights!, CQL explores a wide variety of rights, and shares strategies for supporting people receiving services to learn about and exercise their rights. Attendees will learn about research related to rights, discover best practices, and take part in engaging discussions. In addition, participants will find out about the crucial role that Human Rights Committees (HRCs) play in protecting rights, ensuring due process, and reviewing rights restrictions.
• Rights Conversation Cards
  CQL’s Rights Conversation Cards provide a fun and engaging way for you to spark conversation about a variety of rights through popular card games. You will interact about subjects like decision-making, privacy, voting, healthcare, finances, accessibility, and more!
• Self-Advocates Becoming Empowered (SABE)
  SABE is a national self-advocacy organization with a board of regional representatives and members from every state in the United States. They work in partnership with the Self Advocacy Resource and Technical Assistance Center (SARTAC) to create numerous resources for self-advocacy. These include the Self Advocacy Start-Up Toolkit: More Power, More Control Over Our Lives! which shares how to start a self advocacy group or improve a current group.
• NCI Data About Self-Advocacy Activities
  A recently released Data Highlight from National Core Indicators shares what states can learn from NCI results about people’s involvement in self-advocacy activities. It also details additional resources and information to strengthen self-advocacy efforts.
• The Riot Newsletter
  The Riot is a resource for self-advocates that includes tools, a newsletter, training, technical assistance, and more. There is information about the role that advisors play in self-advocacy in a 2008 edition of their newsletter.
• People First
  The organization People First builds community among People First groups all across the world to keep self-advocates connected. The People First movement started during the planning for a self-advocacy conference in 1974. A ‘sister website’ of People First is Self-Advocacy.net, which shares broader information about the international self-advocacy movement.
• Self-Advocacy Online
  The resource Self-Advocacy Online offers accessible information about current topics related to self-advocacy, with training and other materials for people to learn to advocate for themselves.