University Center of Excellence for Developmental Disabilities

1. University Center of Excellence for Developmental Disabilities Advocating for Yourself & Others Nila Benito Benito@fmhi.usf.edu University Center for Excellence in Developmental DisabilitiesLouis de la Parte Florida Mental Health Institute

2. Welcome Charm, Brian, & Scotty Thometz and Nila, Vincent, & Joseph Benito

3. Advocating for yourself & others . . . “How wonderful that no one need wait a single moment before starting to improve the world.” -Anne Frank

4. What does it take to be an advocate for yourself & others? • An important issue (Something that impacts you personally may impact many others or not. Power in numbers.) • Passion and persistence. • The thoroughness with which the issue, the challenges, and the solutions are explained.

5. Your Issue • What is your important issue where you want to see change happen?

6. A Case Example • 2008 HCBS waiver legislative changes and the imminent harm to all people with DD in the community.

7. Where did we start ? • The issue being faced is the result of a bill passed in the legislature and the only way to fix it now is to ask the legislature.

8. Bill 1124 stated: • Personal care assistance services shall be limited to no more than 180 hours per calendar month and shall not include rate modifiers. Additional hours may be authorized only if a substantial change in circumstances occurs for the individual. • Residential habilitation services shall be limited to 8 hours per day Additional hours may be authorized for persons who have intensive medical or adaptive needs and if such hours are essential for avoiding institutionalization, or for persons who possess behavioral problems that are exceptional in intensity, duration, or frequency and present a substantial risk of harming themselves or others. This restriction shall be in effect until the four tiered waiver system is fully implemented.

9. Fully Understand the Issue Answer as many of the following questions as you can: • Who is being is impacted? • What are the pros and cons of the issue? • What caused the problem you are addressing? • Why should a decision-maker care other than “It’s the right thing to do”? • What forces might be influencing decision-makers? • Who are your allies and opponents? • What it will take for decision makers to support your goals?

10. Who is Being Impacted? Use data if possible: • The more than 27,000 individuals with DD living in their family home and those in their own home and supported living. They cost the least on average only $29,000 per year. Group Homes cost $47,000 per year. • Our children had received letters from the Agency for Persons with Disabilities informing us of a reduction PCA services.

11. Why should a decision-maker care other than . . .“It’s the right thing to do”? It’s common sense to support people who want to live in the community • It is much cheaper than institutions and ICFDD’s. • Individuals have much better quality of life outcomes in the community.

12. What are the consequences and negative impact of the issue? • People are being harmed. Personal care assistance services provides eating, meal prep, bathing, dressing personal hygiene and activities of daily living support to an individual. This service is the backbone of support for individuals who live in their own homes or family homes and was now limited to only 6 hours a day. • No cost savings will be realized. Individuals would not get enough PCA and have to move into more costly and restrictive living environments.

13. Who are your allies and opponents? • People on the waiver were and still are being pitted against people on the wait list. • Who are the real stakeholders? People with DD. No conflict of interest!

14. Developing Solutions FACT: Individuals who lived in Group Homes (res hab) had a much clearer concise definition of who would be eligible for needed services.

15. Developing Solutions • SHORT TERM FIX: NOW! Add the bill phrase from the Res.Hab directive to the PCA lauguage : • Additional hours may be authorized for persons who have intensive medical or adaptive needs and if such hours are essential for avoiding institutionalization, or for persons who possess behavioral problems that are exceptional in intensity, duration, or frequency and present a substantial risk of harming themselves or others.

16. On a personal level, what did Charm & Scotty do? Keep it simple and specific! A One Page Letter: • Developed a personal statement explaining: Scotty’s situation and how this reduction was placing him in crisis. • Included their current contact information. • Listed the natural support our family provides to Scott and that he was safe, & healthy. I also explained that if Scott went into a facility type setting it would cost tax payers a lot more money, and place him at risk. • Suggested a solution: amend/change the wording in the bill at special session in October. • Provided them with the suggested language change • Visited with 16 legislators • Sent letter to all by email

17. On a personal level, what did I do? Did a similar letter about Vincent & Joseph. • Visited Legislators • Emailed then Called. Called Again. • Visited newspaper editorial boards Helped others create their story! Made it easy for them to advocate.

18. How were many people heard as individuals? • Visited Legislators • Called Legislators • Emailed Legislators • Emailed Action Alerts to others (STOP THE HARM) • Sent Letters by fax and overnight mail to Legislators

19. How were we heard as a group? • Rainy Day Rally: a collaboration • A Petition with FDDC

20. What were others saying to legislators? • A myth that “people who live at home and on their own are not severe.” This was discovered during Scotty’s visit Speaker Rubio and other legislators.

21. How do you overcome this? Personal Relationships: Very Important! • ALWAYS: Get to know your local Representative & Senator. Develop a personal relationship. It’s really easy and so critical to effectiveness of your advocacy. Senate:http://www.flsenate.gov House: http://www.myfloridahouse.gov/ • Contact the committee members of important committees so their know you. • Children Families & Elder Affairs • Health and Human Services Appropriations • Health Innovation • Healthy Families

22. You must … REMEMBER! • Be passionate and persistent. It's important to have the passion and persistence to overcome the entrenched attitudes and misinformation that decision makers may have toward disability issues. • Passion is important because it can help sway undecided people to your viewpoint and it helps you focus on your goals. • Persistence helps you follow through on commitments, and keeps your opponents scrambling to keep up with your kind of dedication.

23. What Happened? • The new bill language was passed except for the behavioral piece. • For now a reprieve.

24. Always Say Thanks! • By email • By phone • In person is best!

25. What’s Next? • The tiers and now they are approved. • HMO’s

26. Your Advocacy • What can you do today or tomorrow to change something for yourself and/or others?

27. RESOUCES • Alinsky,S.D. (1971). Rules for radicals. New York, NY: Vintage Books. • Bobo, K., Kendall, J., Max, S.(1991). Organizing for social change: a manual for activists in the 1990s. Minneapolis, MN: Seven Locks Press. • Community Tool Box, Work Group on Health Promotion and Community Development, University of Kansas, Lawrence, KS: http://ctb.ku.edu • The Center for Community Change: http://www.communitychange.org/default.asp