“During times of universal deceit, telling the truth becomes a revolutionary act.” George Orwell

Sunday, June 06, 2004

People with disabilities need advocates

It's true. People with disabilities need advocates. I never cease to be amazed at the manner in which the agencies who purport to help persons with disabilities sometimes don't help to the the extent they are able, and at times actually can hurt.

I was recently at an individualized education plan (IEP) meeting for a young girl with down syndrome. By law, the education of persons receiving special education is to be individualized partially because these idividuals have demonstrated that have difficulty being successful under the regular curriculum and also because oftentimes very specialized approaches are necessary. Anyway, in this meeting diagnostic information was shared about the girl. The teacher indicated that the student only knew about 10 letters of the alphabet (although at the meeting she wasn't sure which those were) and could barely write her name. However, the objective for the IEP was that the student would remember to place spaces between words when she is copying a paragraph from the blackboard. OK, so the most important thing (among others which made their way into the education plan) was that a girl who didn't know letters would successfully place spaces between words in a copied paragraph. Does this strike you as somewhat silly? Even the parents, two intelligent people, didn't speak up about the objective at the meeting until I spoke up.

In a different situation, an adult woman with mental retardation in the mild to moderate range was living on her own in an apartment with about 3 cats. I know it was three, although my nose told me there had to have been more cats in that apartment. The landlord of the complex decided that pets would no longer be permitted in the complex. Tenants were given 2 monts to get rid of their pets. I recognize that this is difficult, however, that was the rule. The woman I knew insisted that she wouldn't get rid of her cats. When case workers from the state attempted to help her to even discuss the possibility, she became verbally abusive. At that point the case workers no longer attempted to work with the woman to get rid of her cats. This is an evil thing to me as they knew what the logical progression of things would be for that woman. Although she had lived for nearly 10 years on her own, she would be evicted from her apartment. Upon being evicted, she would loose her ability to receive reduced rent from the government. Without the ability to receive reduced rent, she would not be able to afford to live in an apartment. Unable to live in an apartment she would be forced to live in a group home for individuals with much more severe disabilities and much less freedom. In some convoluted kind of way, the woman would be receiving the natural consequences of her choices, even though I am confident she wasn't entirely aware either of her choices or the implications of her choices. The approach of the state agency set her up for failure, she failed (according to them) and as a result she was set back, probably at least 10 years in progressing to the level of independence she had been enjoying.

It takes getting to know persons with disabilities and the system to some extent, however, the church is littered with people like myself who have the knowledge and ability to be an advocate. This is a way in which the church can stand up for social justice for a disenfranchised and disadvantaged group of people. Christian social service workers and teachers, does your service end with your exit from your office or school, or can you work to advocate for those who aren't your clients after hours and at other times, even if it means taking on your own state agency?


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