For legislators, some thoughts on autism policy:
1. Promote and respect our kids as valued human beings. Until then, all the policies and legislation we’ve worked so hard for will be circumvented by discrimination and the “law of unintended consequences.” For instance, policies against restraint and seclusion are working in some schools, but others simply call the police, who arrive with handcuffs and pepper spray to handle meltdowns and remove troublesome students. State run hab centers are finally being phased out, but ex-residents may have few options when community leaders attempt to limit the number of people with cognitive disabilities living in their neighborhoods. Schools are required to offer the least restrictive environment, but parents still fight for their children to be in a general education classroom versus a segregated one, and often witness their children being loaded onto school buses at the end of the school day up to an hour before their typically-developing peers.
2. Let the money follow the person, not the institution. With thousands of individuals on waiting lists for services, where are the millions of dollars in state and federal funding? If every child enrolled in special education received an average of $14,000 per year from the state, why are children with IEPs not graduating from high school? Why are less than half proficient in math and language arts, even when the US Dept of Education has produced studies proving that children with even severe cognitive disabilities can learn challenging academic content at a level never before imagined? Or that standardized IQ tests can greatly understate the intelligence of children on the autism spectrum? Let the money follow the person to allow parents to seek out the best education possible so that our kids can realize their potential.
3. Support families. How can parents be doctors, lawyers, insurance experts, teachers and parents at the same time? How can we handle our substantial day-to-day challenges? How do we know what’s available to help our kids? Let’s keep those face-to-face supports near us, and cut the overhead and administrative costs from their higher ups. Parents can figure out what their kids need – we are just in the dark about what’s available – and we can desperately use some respite and a caring somebody to keep us sane when the very institutions that are supposed to help us let us down.
Unbind us, legislators. Free our kids from the unwarranted stigma of disabilities, reallocate the cash that’s currently not going where it is most needed and send us a loyal coach to help us navigate the maze.