Win tickets to see the smash hit musical Mamma Mia at the Roanoke Civic Center. Two winners will each receive four tickets!
Tuesday, October 15, 2013
The Roanoke Times article “Help may be near for some autistic children” (Aug. 14 news story) was of interest to me because I have more than 25 years of experience working in the field of autism.
I am also the parent of a nonverbal adult man with autism.
Several points in the article attracted my attention. The first was the thought that for someone who knows nothing about autism, this article was sensational and good news. But for someone who knows about waivers, institutions, autism, public education, behaviors, community integration and the cost of segregated programs, the article touts a program that we know from research is a bridge to nowhere. It is alluring for the uninformed parents who are looking for “fixing, curing and overcoming” autism. Unfortunately, years of research on autism and experience in public education demonstrate clearly that segregated programs produce adults who are also segregated from their communities.
The other side of the coin: It is clear from reading this article that the services provided to Keion Wiley under his Medicaid waiver are not thoughtfully planned. It is not a plan to have a warm body to spend time with Keion. According to waiver regulations, there has to be a specific plan in place to be able to bill Medicaid for the time nursing student Patrick Ford spends with Keion. Progress notes must be written on specific, planned objectives. One of the waiver requirements is that Keion himself would have participated in the development of his support plan so that he can see that there is a purpose in his life and to prevent his frustrations. Concerning Keion’s frustrations and anxieties, this extra energy is best channeled into exercise, such as daily swimming, taking long walks, riding a bicycle, etc. The support plan could also include making his own bed; putting his dirty clothes in the hamper; folding and returning his clothing to the appropriate place; buying groceries and preparing his own meals — all with support.
Accomplishing these activities, as well as many others, should be taught and supported under the waiver support plan. These are simple prerequisite skills for adulthood. These are just some simple ideas that parents and advocates regularly incorporate into support plans for the general population with autism.
People tend to think that all of this needs to be done in some special place. On the contrary, we know through research and experience that needed routines and skills should be presented and taught in the child’s real-life living environment. This is called community integration — a primary goal under a disability waiver.
As care-givers, parents and teachers, we all have to remember that for the most part, children and adults with autism are mentally capable. We know from listening to adults with autism that using an artificial environment to teach them skills is totally infuriating and even demeaning. They tell us to concentrate on enriching the lives of people with autism by better community integration exposure. They say to treat them with compassion, understanding and respect to improve their experiences within the community and give them fulfillment as a real person.
The movement — not “the trend,” as described in the article — to remove people with autism from institutions is one that all Virginians need to understand and endorse. The treatment of individuals with disabilities in segregated institutions was demeaning, unconscionable and against basic human rights in many cases. Today, we know that people with autism are hard workers, dedicated and, above all, they are perfectionists when matched with the right job.
The behaviors described in The Times article are nothing new concerning autism. We know that by incorporating proven educational interventions, things can be much better for this family. The community close to the family needs to get together and plan out a good Positive Behavior Support Plan for Keion, one that includes a specific crisis intervention plan. For this family and the director of the Blue Ridge Autism and Achievement Center to think that getting a home to practice daily skills will be the magic wand to solve their problems is delusional.
Finally, the U.S. Justice Department’s inquiry into Virginia’s disability system and the letter it issued to Gov. Bob McDonnell indicate that the state has a long way to go before fully and whole-heartedly embracing the rights of individuals with disabilities. I take exception to the idea that keeping people with autism in the community is a trend – implying that this is not a permanent, positive shift in attitude toward individuals with disabilities. People with disabilities, kept so long from mainstream American life, are finally valued for their potential, and their human rights are being upheld. Acknowledging a person’s rights is not a trend. It is a necessity.
Weather JournalStorm track isn't very snowy for us