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My Personal Introduction to Self-Direction for Special Needs

My daughter Talia who has autism has been having community habilitation for years through an agency. When my community habilitation worker, who is well experienced and wonderful with Talia, asked for a raise after having none since she started about four years ago, the agency said they can only provide a dollar more an hour, for $16, a dollar more than NYC minimum wage, for someone who needs specialized training and a lot of patience. I just happened to mention this to one of Talia's therapists who told me that another parent she works with has self-direction and that pays $25 an hour. I also found out it pays for other expenses. For example, I have been unable to get any in home respite forcing my husband and I to take separate vacations for years, but with self-direction, I would have $3000 a year for respite. I would also have funds for community outings. Of course, no one from the state ever informed me of this before.

Last Thursday, I learned my first lesson in self-direction. Talia's care coordinator emailed me to go to Bernard Fineson Developmental Center Building 12 for a self-direction informational session. I drove there to find an old padlocked building. I went next door to building 11. Building 11 was so decrepit that the door knob came off when I opened the door. There was no security and I freely walked inside to a facility for individuals with intellectual disabilities. I asked a staff where to go and he suggested building 72 and was polite and gave me directions. I found out that that building was closed too. I then saw a nice new building, building 80, and thought I would try my luck. When I walked in the security informed me I was in the right place and I attended the meeting. I guess the New York State Office of People with Developmental Disabilities staff made sure at least they had security.

More Evidence Air Pollution Increases Autism Risk

In a recent study that followed 132,256 children from birth to age five to ten, women exposed to nitric oxide during pregnancy were more likely to have a child with autism, (Lief Pagalan, Celeste Bickford, Whitney Weikum, Bruce Lanphear, Michael Brauer, Nancy Lanphear, Lillian E. Hanley, et al., "Association of Prenatal Exposure to Air Pollution With Autism Spectrum Disorder," JAMA Pediatrics epub (November 19, 2018): doi:10.1001/jamapediatrics.2018.3101). According to US Environmental Protection Agency, sources of nitric oxide include emissions from cars, trucks, buses, power plants and off-road equipment. Encouraging vehicles such as bicycles and electric cars can reduce this risk. When we buy gas, we pay not only with cash but also with our health.

New Study, "Association of Antipsychotic Treatment With Risk of Unexpected Death Among Children and Youths."

According to a new study involving 247,858 individuals ages 5-24 receiving Medicaid, high doses of antipsychotic medications (more than 50mg of chlorpromazine (Thorazine) equivalents) had an 80% increased risk of unexpected death compared to a control group, "Wayne A. Ray, Michael Stein, Katherine T Murray, D. Catherine Fuchs, Stephen W. Patrick, James Daugherty, Kathi Hall et al, "Association of Antipsychotic Treatment With Risk of Unexpected Death Among Children and Youths," JAMA Psychiatry, epub (December 12, 2008): doi:10.1001/jamapsychiatry.2018.3421. The individuals in the study "had no diagnosis of severe somatic illness, schizophrenia or related psychoses or Tourette syndrome or chronic tic disorder."

The authors recommended psychosocial interventions and limiting antipsychotic treatment to "the lowest dose and shortest duration possible." Yet individuals often take high doses for long durations, never coming off antipsychotics while we make applied behavior analysis a luxury treatment, available to only to families who can pay for it. As discussed in my book, in a year, 70% of children with autism age 8 and up receive psychiatric medication despite a lack of evidence. However, applied behavior analysis has thousands of studies to show evidence and does not have side effects. Yet our society for the most part refuses to fund ABA, including for my brother Stuart who is on twenty medications including two antipsychotics. Our FDA tried to ban my brother Matthew's two second skin shock which has kept him off antipsychotic medications almost thirty years. Instead our government is choosing and trying to force others to take medications with adverse effects including sudden unexpected deaths, because our education and adult special needs programs for the most part are not funded to provide ABA.

Tens of Thousands Injuries and Death Reports Linked to Medical Devices Cleared by the FDA with Limited Testing

According to an article by the American Medical Association, an investigation found that by allowing approval for high-risk medical devices without sufficient testing through an FDA streamlined pathway, tens of thousands of injuries and deaths occurred. Yet this has not been the case for the Graduated Electronic Decelerator (GED), the skin shock device which saved my brother's life, stopped his life-threatening head banging, and has been safe. As I have stated before, I tried the device myself because I wanted to experience what my brother experienced. Medical decisions need to be based on facts, scientific evidence, not emotional arguments.