What adds to the struggles of parents and caregivers is the obvious disconnect amongst the professionals in the field of autism. Public schools and the medical establishment are at odds when it comes to the best practices for establishing the individual education plans necessary for planning and tracking the progress of our children. Parents will have their child’s assessment done at a hospital or through their medical provider. That assessment will “prescribe” x-number of hours of occupational therapy per week, and x-number of hours of speech therapy per week amongst other things. The parents take the assessment to the local school and insist that the program be implemented and followed as prescribed in the medical assessment. The schools, which almost always lack the resources to provide the most basic services, will inevitably deny that the treatments prescribed in the medical assessment are truly necessary.
It’s like having a prescription that no pharmacy will fill. After all, the medical professionals may have prescribed this treatment but they can’t make the schools abide by it. For many parents, this is the beginning of a very long, very painful and sometimes expensive process. Unfortunately, this is a time sensitive issue. The only thing that everyone will agree upon is “that early intervention is the critical to the success of our kids.”
It’s an interesting dynamic. The medical community relies upon the public schools to make the initial diagnosis; a diagnosis they won’t make. Only after the public school says that the child has autism, will the medical community act. Once the medical community accepts the schools assessment, they won’t confer with the schools to determine the best treatment for the individual. It seems to me that if you rely upon the schools to make the assessment, you might rely on their input for the treatment you’re prescribing since they will ultimately be responsible for implementing it, right? Perhaps I’m being naïve.
Even more interesting is the response from local medical school professionals. In my later attempts to establish a program utilizing the interns and mentors from local universities to work in homes and schools in our area, we came to an impasse regarding the supervision of interns with a clinical background. A local university representative told me that we must provide proper supervision for interns for a specific amount of hours per week. I told him that we would use the school district’s psychology staff to provide supervision and support to the university students. The university spokesperson said, “I doubt the school district’s psychologist are qualified to supervise our interns”. Not qualified? These are the people that made the initial evaluation that started us down this road. The evaluation that our well respected and very well qualified pediatrician affirmed and responded to. These are the people we were told could and would make the assessment that our doctor would not. These people aren’t qualified to supervise your unlicensed college students? Perhaps I'm being naive.
The relationship between public schools and parents of children with disabilities is often strained and sometimes volatile. As the parent of a child with autism, you are sometimes isolated from the normal support networks that most people take for granted. Parents will see their extended family and friends slowly grow distant. In some cases, families experience a self-imposed isolation. Their child’s public behavior may be too difficult to deal with on a consistent basis so they don’t go out as often.
In other cases, family and friends don’t know how to help or deal with the challenges you’re facing so they tend to stay away. I know of one father who says his brother and sister in-law were embarrassed by his son’s public meltdown at a local shopping mall. They haven’t gone out together in over four years because of that incident. No matter what the cause, the isolation that families experience can have a devastating affect on everyone concerned.
The fact is there is only one entity that has a legal obligation to assist parents with the challenges of helping their children succeed; their local public school. The medical community can’t offer you the necessary resources, you may not feel supported by family and friends, you may not have the financial resources to hire specialist and therapist but the one thing you know is the public schools are legally required to provide the resources necessary to educate your child. So, public schools become an outlet of frustration for many parents. Added to this volatile mixture is the inflexibility of our public school system, the under funding of public schools, poor teacher/staff morale, lack of resources and knowledge regarding autism and a 600% increase in autism rates over the past five years in our valley and the relationship between parents and schools is set up for failure.
When our state representatives talks about cuts to public education, you must understand that these cuts extend far beyond the classrooms, campuses and school yards.These cuts will be felt in our neighborhoods and in our homes.
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