Green en Mount untai ain Self lf-Advoca Advocate tes www.gmsav gmsavt.or t.org • Bri ringing ging The Voices ces Of People le With th Inte tell llectua ectual And Develo velopmen pmental tal Disabil sabilities ities Into Our Convers rsation tion • Presum ume Compet peten ence ce • What Is Meant By Intell llectu ectual al Ability lity • Barr rriers rs People le Face Access ssing ing Serv rvice ices And Support rts • Bri rief Introducti ction To Strategies tegies To Promote te Supportive rtive Decisio cision, n, Making ng With th The Goal Of Maximizing izing Self lf-determin eterminatio tion • Making ng Inform rmati tion More Access ssibl ible To People le With th Intell llectu ectual al Disabilities sabilities 1
Lo Look Thr hrough ugh Our ur Ey Eyes Green Mountain Self-Advocates has 21 local groups throughout Vermont. We have over 600 members who have an intellectual and developmental disabilities. We have been collecting stories and comments from our members, examples of the attitudes and actions that people with disabilities face every day. We are going to share some comments we have heard. If we were together, face-to-face we would be passing around a backpack loaded with rocks. We typically write a comment on a piece of paper and attach it to a rock. Each rock in the backpack has a story on it. We pass the bag around the room. Each person takes out a rock and reads what it says aloud. 2
Look ook Th Through ough Ou Our Ey Eyes • What if when someone asked you a question, and while you are thinking of your answer, somebody decided for you? • What if you were 54 years old and you were told when to go to bed? • What if someone said you could not have sex or even hold hands with the person you love? • What if people talk or write things about you behind your back? • What if at lunch you were told to eat your vegetables even though you didn’t like them? • What if one day you had to clean your room before you could go see a movie? • What if you made an embarrassing mistake and everybody where you work and live, including your family knows it? • What if people tried to run your life instead of letting you make choices? • I stutter…and people just answer for me. I just need time to answer. 3
Look ook Th Through ough Ou Our Ey Eyes • What if you made an embarrassing mistake and everybody where you work and live, including your family knows it? • What if when you show your emotions or tell people how you feel you get more meds? • What if there are team meetings about your life but you never get to invite who you want to be there? • What if you were constantly judged because of something you did in the past? • What if you had a disability and you heard people use the word “retarded” all the time? • What would you do if people took your things (your computer, your phone, your ipod) away from you when you make a mistake? • What if people tried to run your life instead of letting you make choices? • They told me I could never go to college. Why not? I have dreams too. 4
Look ook Th Through ough Ou Our Ey Eyes • What if you were told you could never be your own guardian? • What if you were told you could not have pets? • What would you do if people said you are not allowed to go to a bar? • What would you say if people said you could never have children? • I was right in the room when everyone was making decisions about my life. • Even if an activity is fun, that doesn’t mean I want to go do it every day. • My disability causes my hands to be twisted. But I still want to write things down on paper or handle my own money. I just need extra time to do this but everyone grabs things from my hands and does it for me. • I have another new case manager. They were hired before I even met them. They got to look at my whole life and no one even asked me about this person. • I have my own way of doing things. So why do people tell me to do things their way? 5
Look ook Th Through ough Ou Our Ey Eyes • I have my own way of doing things. So why do people tell me to do things their way? • I know my support staff has been doing this for 15 years, but that doesn’t mean there’s nothing more for them to learn. • I’ve made mistakes in the past, it is true. And I have learned some things from my mistakes. But I never get another chance. • I want to see my girlfriend on Friday night but no one will take me. Why do I only get to spend time with them during the week at public places like bingo? • They took my kids away because they said I had a disability and I wasn’t able to raise them. • Whispering about me…I can still hear you, whether or not I am able to tell you with words. • People care about me and want to protect me. And I appreciate that, but I don’t want to protected from living my life. 6
Look ook Th Through ough Ou Our Ey Eyes – Debri rief ef Qu Quest stions ions Sometimes people say that having a disability is a burden. But we encourage people to be proud of who they are and that includes having a disability. The real burden is the attitudes, words and actions of others. That is what weighs us down. Any thoughts about what you heard? 7
What We Mean By Intel ellec lectual tual Ab Abili lity ty We ar are bas asica call lly tal alki king ng ab about ut people le using their brai ains to: • Learn • Understand and use language • Remember • Do math • Put things in order • Deal with information gathered by the five senses • Make a plan • Find a word • Set priorities • Make a decision • Solve problems • Pick up on social cues and respond • Focus or keep attention on something accordingly • Shift attention to something else if needed The general measure of intellectual ability is a person’s ability to use these various functions to live successfully. Three types of intellectual abilities are described in the following slides: 1. Autism 2. Learning Disability 3. Intellectual Disability 8
Autism • Each person experiences autism in different ways and at different intensities. It depends on the person, but he or she may: • Find it hard to look at a situation from another person’s perspective • Have trouble speaking • Avoid eye contact • Have special interests that capture their attention. This intense focus on one topic or “love of routines” may make it difficult to change gears and move on to do something else. • Need support to organize their day and write things down • Have no real fear of danger • Have difficulty reading facial expressions • Not understand how to follow pointing or gestures • Be frightened by certain sounds or the way things look. We end this section on autism with a vivid description written by a person with autism describing why some people with autism may suddenly express a burst of energy. After a busy day at work and being around people, my brain needs a moment to release energy that builds during the day. I call it an energy release, shaking the energy out of me. I need a break from the real world, into my own world. 9
Learning Disability • Learning disabilities can be explained as a “short - circuit” in one of several parts of the brain. This can disrupt the way the brain gets information, makes sense of it, stores it and comes up with a response. As in people with autism, there are great differences in how a person may experience a learning disability. Here is a list of things that may be difficult for people with learning disabilities to do: • Reading and writing (words may blur or move around the page) • Listening to a lot of information • Doing math • Remembering what someone said • Following many directions • Staying focused when there are distracting noises • Evaluating different options before making a decision • Giving directions or recalling what happened in accurate order • Listening without becoming distracted • Paying attention to details • Completing a task quickly in the time they are given 10
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