Psychologists Langer and Rodin determined in the late '70s that people lived longer when they were given the ability to sustain a sense of personal control. Some care providers forget that the same things that apply to all people also apply to people with disabilities. It's understandable and easy to make decisions for people. Caregivers may think they know better or be able to do things faster or more safely. Even if this may be true, it is still better to let the person with a disability try. I am experienced and well trained in advocating for people with disabilities, and even I have to work on this.
Caregivers' role in self-determination is that of a facilitator, rather than decision maker.
Vanderbilt University developed a helpful guide for the Tennessee Department of Education. They determined that there are seven sets of skills necessary for self-determination. Direct support professionals (DSPs) can help develop these important life skills.
1. Choice Making
Caregivers can begin by giving their clients small choices like what clothes they want to wear, what foods they want to eat, what music they want to listen to, etc. The person with a disability should help craft their daily schedule, rather than having the caregiver tell them what needs to be done when. The caregiver should offer choices and talk through each option. For example, if it is cold outside, most people would assume that we need a coat, rather than ask. What might be better, is to talk about why people usually choose to wear a coat, as coats usually keep us warm and dry and more comfortable. If they choose not to wear the coat, it is a good idea to honor that choice. People need to experience consequences sometimes, so they can make better choices in the future. The caregiver could bring the coat along and periodically ask if they want to wear it. It is also important to ask them to explain why they don't want to wear it. Being able to articulate their reasons behind their choice is a transferrable skill. You can acknowledge that it is a good choice, if applicable. For people who have difficulty making choices independently, give the options in advance and add visuals, or additional information, as needed.
Both family and caregivers should want what is best for the person, but there might be different definitions and ideas about how to get there. Expect some resistance.
2. Decision Making
Direct support professionals should give their clients all available options and help them analyze the pros and cons of each. For example, choosing something the client would like to do on the weekend. Options might include going to a movie, going to a sporting event and/or volunteering.
DSPs can talk about the decisions they are making and what impacts they might have. For example, if the client chooses to volunteer, they might be gaining valuable skills, but have less time to hang out with friends.
3. Problem Solving
DSPs can help talk through a decision that they are making and allow the person with a disability to help them. For example, if a client is angry with someone, the DSPs can talk through and brainstorm appropriate ways to solve the conflict.
DSPs can also debrief with a client after a solution has been tried. Ask questions like, "How did that work out?" or "What could you have done differently?" Acknowledge what went well.
4. Goal Setting and Attainment
DSP can introduce models such as the SMART (Specific, Manageable, Attainable, Realistic and Time Bound) way to set appropriate goals. Talk about why goals are important and what they want as their personal goals.
Work with the person to define achievable steps to reach goal. Identify needed resources and together create ways to track progress and keep each other accountable.
Celebrate the small victories and focus on the process, not the end result.
5. Self-Advocacy and Leadership
Role play different situations modeling assertive vs. passive or aggressive behaviors. Discuss which are the most effective ways of communicating. Practice using assertive communication to advocate for themselves without offending others.
Encourage the person to advocate for their own preferences, opinions, etc.
Pair them with a mentor that has similar interests, strengths, etc who regularly advocates for themselves.
6. Self-Management and Self-Regulation
DSPs could help "unpack" their day by reflecting on their day, what went well, what steps towards goals were taken, etc. Offer supportive feedback and limited support until they can demonstrate self-management.
7. Self-Awareness and Self-Knowledge
It is essential that every person be able to know his/her disability, as well as, strengths and weaknesses. Stress that everyone is interdependent. We are all unique.
People talk about as if people without disabilities are completely independent and do not rely on any one else for support. If you really think about it, this is not true at all. We all buy goods and services that we would not be able to provide for ourselves. We all have friends and most of us have family that provide us with support. You should not have higher expectations for people with disabilities than you have for yourselves. We are all interdependent, as it should be.
Investigate dreams and use those to create goals that do not focus on the things that the people with disabilities cannot do, but do focus on what they can do.
Another important thing is to create relationships in the community by finding a way to get them involved. This will develop natural supports.
People with disabilities want to be seen as human beings with likes and dislikes, strengths and weaknesses, and most importantly, individual goals and dreams. They want to have choice.
The person with disabilities has the biggest part to play in their future. DSPs can help them to teach the others around them what their dreams are, what their strengths and weaknesses are, what they like and what they do not like. We each have our own path.