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Self-Advocacy & Self-Determination

We are constantly told that our loved ones with disabilities need to have self-determination and self-advocacy skills. But what does that really mean?
Self-determination and self–advocacy are skills that go hand in hand but at times the line of distinction can get blurry. Both share a similar interest: independence!

Self-Advocacy:

Self-advocacy is an important skill that your loved one with a disability can obtain.
Without it, they can often be overlooked, used, or even abused. But what is it? Self-advocacy is the ability to speak up for yourself, knowing your rights, wants and needs, identifying your personal goals and the steps to get there, and being able to communicate them. Not everyone can accomplish all of what is listed but ideally, they can self-advocate in some kind of compacity.

In Joel’s case, his self-advocacy mostly consists of identifying wants and needs. He faces barriers with speaking up for himself becuase not everyone can understand him and he hasn’t learned about rights and all that. I’m not saying he never will, but he just hasn’t gotten there yet. It’s a process and we will continue to teach him and work with him. For as long as he needs us, Joel will always have someone to help him be a self-advocate. And for when he can’t, we’ll always be there to advocate for him.

Here are a few things that I have learned about successful advocacy:

  • Know and understand what you are advocating for. (Do
    researches, present the facts, and be prepared to answer the tough
    questions!)
  • Know that you are not alone in this world of advocacy.
  • Form relationships
  • Share your personal story. Be vocal, but be respectful.
  • Pick your battles, don’t get involved with everything. “Burnout”
    is a serious thing.
  • It is okay to hear the word no. It’s okay to agree to disagree.
  • Be persistent and willing to compromise, when necessary.
  • Strength in numbers! The more people you have advocating
    alongside you, the better!

Whatever cause you’re most passionate about, let your voice be heard. You’re not only making a difference for yourself, but also those around you.

“Be bold enough to use your voice,
Brave enough to listen to your heart,
and strong enough to live the life
you’ve always imagined!”

Self-Determination:

Self-determination is the process by which a person can control their own life. It’s a little different than self-advocacy. This would include being able to go to the doctor on their own, going grocery shopping, or living independently. This skill is equally important as self-advocacy. For some, this is easier than self-advocacy but for others like Joel, this one is more difficult. The both are attainable, but it takes time and patience.

Developing these skills helps lead individuals with disabilities onto the road of independence. It is our duty to help them develop these skills in any way possible. We can do this by encouraging them to do their own grocery list or by letting them speak at their own appointments. Another great way to practice this would be through role play at home. It can be a slow process but it is worth it in order to have our loved ones
meet their full potential.

For Joel, we let him do grocery lists sometimes but what he really likes is to take control of the shopping cart and deciding what goes in and what requires us to beg him to let us put in the cart! We also let him pay for his own things at times, which can be difficult but he doesn’t really understand the value of money but we are working on it. We try to let him communicate his pain or what have you at doctor appointments but he typically just stares at the floor and stays silent. It is a very slow process but were are ready to teach him and help him for as long as he needs it.

There are many agencies that should be available to you in your community that are supposed to help your loved one with a disability achieve this. Check our resources page to find some. I know each state has at least one parent training center that should help you locate these services closest to you. You may be looking for human services districts, office for citizens with disabilities, rehabilitation services and more.

I hope you find this helpful!
For tips and information on Self-Advocacy visit:
http://www.parentcenterhub.org/repository/priority-selfadvocacy/#youth
For tips and information on Self-Determination visit:
http://www.pacer.org/transition/learning-center/independent-community-living/selfdetermination.asp

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