1. Advocacy

2. Objectives Upon completion of this session, you will: Learn WHY Advocacy is important Learn key steps in advocating for yourself Learn key steps to group advocacy

3. What is Advocacy?

4. Simply put….. advocacy means to “speak up”.

5. when people speak or act on their own behalf, or on behalf of someone who asks for assistance. a means to obtain information, services and resources, as well as the cooperation of health and social service professionals. an assertive and cooperative strategy, not an adversarial approach. an individual passion transformed into group action. What is Advocacy?

6. Why is advocacy important?

7. Advocacy is important because you are important.

8. Advocacy…. can help you have control over your situation. ensures that you have a voice and that it will be heard. can help make service providers accountable ensuring there is transparency in their actions and decisions. Why is Advocacy Important?

9. Advocacy…. can change community attitudes and misconceptions. can help people to gain access to resources, funding and information. can help you know the difference between what you can and cannot change. Why is Advocacy Important?

10. Key Steps in Self Advocacy 1.Believe in yourself 2.Identify your need(s) 3.Set a goal 4.Make an action plan 5.Execute the plan 6.Follow up

11. Self Advocacy - Key Steps Step 1: Believe in yourself A big part of the responsibility for getting what you need is up to you. Setting goals helps give you control – achieving goals builds confidence. Listen to critics, but never let them convince you that you are less than you are.

12. Self Advocacy - Key Steps Step 2: Identify your need(s) Prioritize – how important are they to you? Sort them to know who is best able to help you with each – medical, financial, emotional, social, legal? Break large problems into small, manageable pieces.

13. Self Advocacy - Key Steps Step 3: Set a goal This gives you long term vision and short term motivation. Make it clear, try to keep it to one sentence. List barriers – find out what you can do about them, brainstorm solutions to overcome them.

14. Self Advocacy - Key Steps Step 4: Make an action plan Know what you’re talking about – get complete and accurate information. Gather support. Strategize – know the chain of command. Be clear about your requests. Give yourself a timeline and target dates. Plan for worst case scenarios.

15. Self Advocacy - Key Steps Step 5: Execute the plan (before the meeting) Write, email or call to make necessary arrangements for the meeting. Think about the best approach – should you see this person alone or in the presence of others? In this person’s office or in another location? In the morning or afternoon? Request a written agenda – contact the person in charge to add your concerns or questions. Consider bringing a tape recorder or another person with you.

16. Self Advocacy - Key Steps Step 5: Execute the plan (during the meeting) Keep the meetings short and to the point. Begin with a generally positive statement about the person or organization. Move on to the strongest point of your argument. Avoid using negative language. Be assertive, not aggressive.

17. Self Advocacy - Key Steps Step 5: Execute the plan (during the meeting) LISTEN Don’t hesitate to clarify what you just heard by repeating it. Be aware of your body language. While others may get angry or annoyed, you will benefit by keeping calm.

18. Self Advocacy - Key Steps Step 5: Execute the plan (during the meeting) Say what you have to say and then stop. Avoid sarcasm, character assassination, or absolutes. Learn to say no. Be trustworthy – tell the truth, keep confidences, and honor your promises.

19. Self Advocacy - Key Steps Step 6: Follow up Debrief – write down who was at the meeting, what happened, what was said. Note what the next steps are. Be prepared to have another meeting, a phone call or to make another plan if this one doesn’t work out.

20. Common Obstacles to Effective Advocacy

21. Common Obstacles Being unprepared Fearing retaliation or worrying what others will think Being aggressive Being unaware of your rights Having unrealistic expectations Being unwilling to listen to other people, or to explore alternate solutions Feeling inferior or less educated than others Having English as our second language

22. What happens when you don’t get what you want?

23. Negotiation It’s a process, not a one-time event

24. Negotiating Ask the person…. to put in writing why he/she has said no to your request. what advice he/she would give you to achieve the solution you want. what solution he/she would recommend as an alternative.

25. Negotiating If this alternative is acceptable, ask him/her to put in writing the solution and date it is expected to happen. Know your BATNA, or Best Alternative To a Negotiated Agreement:  Can you walk away if you don’t get this?  What other choices do you have?  What are the pros and cons of each choice?  Also consider what the other person’s BATNA might be. What are your best and worst case scenarios? Aim for the area in between during negotiations.

26. Negotiating Stick to the problem, and to the facts of the situation. If you find yourself becoming argumentative, angry or withdrawn, leave the conversation and come back another time when you are not upset. Ask for a second opinion. Document all your meetings and telephone calls – include the date, to whom you spoke, what was said.

27. Group Advocacy

28. Group Advocacy is…. when people come together to represent shared interests or goals. offers mutual support, skill development and a common call for change. often aims to influence public-policy and resource allocation decisions.

29. Key Steps in Group Advocacy: 1.Bring like-minded people together. 2.Identify the problem. 3.Develop your strategic objective. 4.Get the facts. 5.Identify your target. 6.Determine your method. 7.Review, evaluate and adjust.

30. Group Advocacy – Key Steps Step 1: Bring like-minded people together People with common concerns are the most effective when brought together to work towards one objective Diversity of experience and perspective helps make your coalition dynamic. A group puts a face on real issues.

31. Group Advocacy – Key Steps Step 2: Identify the Problem Determine the broad area of concern that you all have in common, such as the high cost of medical care. What are some other problems or concerns that people in the bleeding disorders community share?

32. Group Advocacy – Key Steps Step 3: Develop your strategic objective A solution or partial solution to the identified problem. Should be clearly linked to the policy change necessary to address the problem.

33. Group Advocacy – Key Steps Step 4: Get the facts Use coalition partners and allies to gather the most comprehensive, up-to-date and accurate facts as possible. Identify facts that will make the biggest impact. Analyze all aspects of the situation. Identify which facts are missing.

34. Group Advocacy – Key Steps Step #5: Identify your target(s) The person who has the power to make the change happen. Who needs to hear what you are saying? What are their motives?  Friends and allies – Who shares this issue? Motives?  Opponents – Who will try to stop us? Motives?  Undecided – Who is on the fence? Motives?  Media – What media attention can you get?  Other key players – Who else could play a part in your plan?

35. Group Advocacy – Key Steps Step #6: Determine your method The full spectrum of activities you want to implement. Analyze which activities will have the greatest effect on your target(s).

36. Group Advocacy – Key Steps Step #7: Review, evaluate and adjust Review challenges, objectives, target(s) and method. Measure results. Meet and discuss regularly so your group stays together and addresses new concerns.

37. You don’t need to reinvent the wheel! The bleeding disorders community has a vibrant coalition of organizations and individuals dedicated to group advocacy.

38. RESOURCES Hemophilia Federation of America www.hemophiliafed.org/advocacy/ www.hemophiliafed.org/advocacy/ State policy issues State and federal blogs Advocacy in a Box – tools ready to use Issues and Positions Legislative Action Center Voices Campaign

39. RESOURCES National Hemophilia Foundation (www.hemophilia.org)www.hemophilia.org Advocacy Priorities Advocacy Resources Washington Days Take Action Tell Your Story Healthcare Reform Committee of Ten Thousand (www.cott1.org)www.cott1.org

40. Questions?

42. THANK YOU!