Back in the 1950′s many parents of children with disabilities did not like the options they were offered with regard to the care and training of their children with disabilities. Institutionalization, dependency and separation were not acceptable options to these parents. So some parents came together and acted to create new solutions that suited their children and families better. They forged paths in a new territory. We now benefit from their efforts.
Eventually these parent-initiated organizations became the institutions and agencies we now know and use — Countryside Association, Avenues to Independence and The ARC of Illinois, to name a few. (Betcha several of your agencies began about the same time, prompted by activist parents.) I can’t help but think that parents are in the same position now — operating with lousy information, shrinking resources, and unclear objectives. We’re battling higher prevalence of disability, higher expectations for quality of life, smaller family support systems, reduced budgets and so on. We need new options, new solutions.
Coming together is not easy these days. Everyone works too hard, if they are lucky enough to have a job. Privacy laws that are meant to protect us inadvertently keep us apart. Families are scattered and mobile. Each of our children is distinctly different from the other — one program does not fit all of us.
And the you-know-what doesn’t really hit the fan until the child in question turns 22. That’s when the educational system withdraws its support, even if the Educators don’t want to. This is an age when many parents withdraw from their children’s lives in the interest of their independence, but we as parents of a young person with a disability are asked to become more involved. This is because the teachers are gone, the remaining services are fractured, fear of rationing prompts us to withhold information from each other, and we are placed on waiting lists 10+ years long. Who honestly thinks our disabled child can navigate this maze without help? A lot of us need new solutions.
A central interest of TheNemoNews.com was to improve the odds of coming together to improve lives by providing information of interest within a specific geographic area (Lake County Area). We hope to better inform those in need. We hope to stimulate conversation, creativity and solutions. We hope to help catalyze a new solutions group.