1. Acknowledging Self-Determination in Supporting Participants in the Adult Autism Waiver

2. What is Self-Determination??
“volitional actions that enable one to act as the primary causal agent in one’s life and to maintain and improve one’s quality of life” (p117).
Wehmeyer (2005)

3. Self-Determination is NOT
Always done by ourselves
Always successful
Always free from environmental influences

4. What Does Self-Determination Have to Do With AAW?
As SCs, we facilitate the development of needs based services and supports that are balanced with desires of the participants
As providers, we provide support DAILY to empower and encourage self-determination and autonomy to the greatest extent possible
IT’S ALWAYS ABOUT THE PARTICIPANT AND WHAT THEY WANT AND NEED FOR NOW AND FOR THE FUTURE!!!

5. Not Just Choice… Its so much more!
Professionals in the field largely believe that self-determination mainly involved choice making and expressing preferences (Agran, 1999).
Its so much more!

6. Influences… Self-determined Acts Environmental Contexts
Interpersonal Supports
Environmental Contexts 6

7. Its also a delicate balance…
Participant
People in Participant’s Life
We need to…
Consider who are the “trusted allies”
Ensure that there is collaboration with the allies and participant
Turnbull & Turnbull (2001)

8. Self-Determination = Quality of Life
What is a good quality of life?
Whatever it is, it means that we decide what it is!

9. Focus on Interpersonal Supports
We know little about how interpersonal supports should be delivered to facilitate self-determination
We know little about self-determination from the perspectives of people with disabilities! 9

10. What Can We Learn from Perspectives?

11. Qualitative Study Interview
10 self-advocates with cognitive disabilities
Age range: 24-56
Residential:
Semi-independent
Group Homes
Family living
With Family
Employment:
Workshop
Competitive
Volunteer
Unemployed/retired

12. Survey On line survey 11 respondents living with ASD Age range: 18-45
Residential:
Independent
With roommate
With Family or Relative
With Significant Other
Group Home

13. What is Self-Determination to YOU?

14. Defining Self-Determination
I’m My Own Advocate:
Speaking Out 14

15. Defining Self-Determination
Being My Own Boss:
Taking Charge
“I want someone to help me, yes. I ain’t saying that I don’t want someone to help me. I need help, you need help, everybody needs help. The point is, if I am going to be a self-advocate, the first thing I could do is speak up for myself to know what’s going on in my life.”

16. Survey: Defining Self-Determination

17. What things GET IN YOUR WAY to be Self-determined?

18. Impeding Staff Actions
They would boss me around:
Usurping control
“They’d tell me what time to go to bed, what time to eat, and wherever they go, wherever the staff go, we’d have to go.”

19. Impeding Staff Actions
He used to hold my money:
Controlling personal money

20. Impeding Staff Actions
I can’t tell her:
Unapproachable or inaccessible
“Well, they have never helped me before, they won’t help me now.”

21. Impeding Staff Actions
I haven’t seemed to get a job yet:
Failing to follow through
“I kept telling them that I wanted to move and the BAM, just like that, they moved me. I still cant find some of my stuff.”

22. Impeding Staff Actions
She said if I moved out she wasn’t going to talk to me anymore:
Obstructing and coercing
“I wanted to see the tractor pull, but he wouldn’t give me money from my bag. He said it wasn’t something I should watch.”

23. Survey: Impeding Staff Actions

24. What things HELP YOU be more Self-determined?

25. Supportive Staff Actions
They point me in the right direction:
Expanding experiences and options to encourage choice and self-direction
“She [case manager] told me to try another house. I did not like where I was, but didn’t know I could move. I tried it and liked it.”

26. Supportive Staff Actions
I could go to somebody higher up:
Supporting access to people of authority
“I called my job coach and he didn’t answer. When he didn’t come to check on me again, I called him again. When he didn’t call me back, I called his boss. I felt bad.”

27. Supportive Staff Actions
I feel comfortable with her:
Being approachable and accessible
“ It’s important to me if you like your staff. You could talk to her about more, you could open up to them.”

28. Supportive Staff Actions
I will have the staff sit down and I will tell them what is on mind, and I will sort out the choices:
Listening without judgment
“I just told them that I wanted to be alone with my boyfriend. They explained why I couldn’t.”

29. Supportive Staff Actions
Have staff in my corner: whatever I want to do, they will help me:
Providing support for follow through

30. Survey: Supportive Staff Actions

31. So What Does This All Mean?

32. Points to Ponder…
Overarching themes that are important to the way we support individuals to be self-determined:
Importance of Relationships
Impact of Environments
The Role of Choice
Use of Power 32

33. Importance of Relationships
Support staff that provided stability and that could be trusted.
Support staff that provided ongoing encouragement to be self-determined
Who is that person for the participant?
Setting the foundation by restraining judgment, being available and making the person feel comfortable (especially with approaching the support staff with sensitive issues related to being self-determined) 33

34. Impact of Environments
Understanding that living in congregate settings poses boundaries to express their desires.
Having to comply with group, staff, or family decisions rather than what the person wants.
Living in rural areas where public transportation is scarce making navigating their communities difficult without the aid of transportation.
Being cognizant of and creative with ways to address and balance the self-determination of individuals that we support and restrictions imposed due to living situations.

35. The Role of Choice
Both major life decisions (e.g., changing residential or employment situations) and minor, daily decisions (e.g., what to eat, when to take a shower) are important for a variety of reasons:
May lack skills
Relinquished control
Lack of understanding that self-determination is more than choice
As a field, we have advocated for presenting, encouraging and teaching “higher level” choice making, but we need to know that major and minor decisions and choices are equally important to individuals that may not have had opportunities and/or experiences to express choice.

36. Need to examine motivation in using coercive tactics:
Use of Power
Support staff that manipulate a situation or a person’s view of a particular situation in an effort to persuade the person towards what the staff thought what would be best thwarts the person’s self-determination.
Need to examine motivation in using coercive tactics:
Competence issues
Reward structures