State and Federal governments have introduced laws in many areas. Some of them are:
- Food & Drug Administration (FDA)
- Drug Enforcement (DEA)
- Governing Fetal Stem Cell Transplants
- Pharmaceuticals (including Medical Cannabis) & Insurance
- Education & Habilitation
- Employment & Support
- Offender Laws & Forensic Issues for the Courts
Yen & Mao (2011) say that parents often encounter unanticipated challenges in their efforts to find optimal treatment and educational placement for their child. One of the most difficult obstacles involves dealing with the legal aspects.
They go on to say that the Individuals with Disabilities Education Act (IDEA) is the primary law that is invoked when parents are trying to access services because it covers qualified individuals from age 3 to age 21 for educational needs. It includes Family Educational Rights & Privacy Act (FERPA) and Least Restrictive Environment (LEA). There are procedural safeguards in place and families of children with autism may need legal help to navigate the system when gaining access to programs as children and adults.
Then there is Avonte’s Law. Hilton (2017) reminds us that “…Shortly after noon on October 4, 2013, a 14-year-old African American 8th grade student named Avonte Oquendo” ran out of the side door of his school and into the community. Identified as severely autistic and nonverbal, Avonte had a “strong sensory affinity for trains, cars, and water systems.”
Avonte’s disappearance and the discovery of his remains several months later… “The medical examiner concluded that he had most likely fallen from an embankment into the East river and drowned.” This tragedy “prompted local officials and politicians to call for review of educational policies and school-security protocols for children with disabilities…”
Until recently, the voices of autistic people have been absent from the conversation about why wandering is such an issue with this population. Naoki Higashida, a 13 year-old-boy with nonverbal autism, through facilitated communication, answered questions concerning his elopement activity.
Question: Why did you wander off?
Answer: My body was lured there by ‘something’ outside. As I was walking farther from home, I didn’t feel any fear or anxiety. I had to keep walking on and on. Turning back was not permitted, because roads never come to an end. Roads speak to us people with autism, and invite us onward. Until someone brings us back home, we don’t know what we’ve done and then we’re as shocked as anyone.
< My Thoughts > “…prompted local officials and politicians to call for review…”
Why do we wait until there is a tragedy to write or change laws? We don’t seem to be a society of ‘prevention’, rather one of ‘fixing after the fact’. It seems true that laws which shape the treatment of the autism population have passed the learning curve and may hit the wall. Smiles.
Lesco, retrieved from https://www.autism.com/advocacy_lesco Lists the ‘basic eligibility criteria’ for getting support when seeking employment –
- Prove with medical documentation that they have impairments that will interfere with their ability to work without support such as ‘job coaching’ or special training.
- Prove the need for vocational services in order to obtain employment.
- Show that any requested services are directly related to getting & keeping employment.
Some have said that unless the person can prove significant disability, they may not qualify. An example was given that a person with Asperger’s and ‘strong intellectual abilities’ may not qualify for assistance. Hmmm…
Green (2013), in her review of various articles, discovered that much of the literature brings up the ‘invisibility of autism’.
Families seem know long-term stress and anxiety because of experiencing societies’ expectations of the person with autism, the ‘invisible disability’.