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

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)

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

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!!!

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!

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

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)

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

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

What Can We Learn from Perspectives?

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

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

What is Self-Determination to YOU?

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

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.”

Survey: Defining Self-Determination

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

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.”

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

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

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.”

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.”

Survey: Impeding Staff Actions

What things HELP YOU be more Self-determined?

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.”

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.”

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.”

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.”

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

Survey: Supportive Staff Actions

So What Does This All Mean?

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

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

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.

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.

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