Autistic adults deserve the care – and recognition – we all do
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Version 0 of 1. Most students spend the last semester of high school predictably: visiting colleges, sending in SAT scores and collecting an anticipated diploma. High school graduation marks the commencement of a new chapter, a fresh start in an unfamiliar place. But for some, the diploma is referred to as a “certificate of completion” and the term “graduation” is replaced with “aging out of the program”. For these young adults, the promise of a fulfilling start in the next stage of life is often rife with uncertainty. Melissa, my younger sister, has Rett Syndrome. Rett is a neurological disorder that lies on the autism spectrum. People with Rett Syndrome are typically nonverbal, suffer from seizures and rely on others for daily care and basic needs. Melissa’s fate – now 22 and “aged out” of high school – lies in the services available to adults with autism. Our mother is Melissa’s full-time caregiver and strongest advocate. She’s spent the past four months touring specialized day programs available in Marin County, California, where our family resides. After touring numerous prospective programs, she found only one in the county is qualified to care for the “medically fragile”. It has 10 spots for “consumers” – as the student’s transition from high school, they assume this new designation – that require one-on-one aides. This is particularly surprising in a county known for its social programs and affluence. Melissa’s condition is delicate and rhythmic; I can predict an oncoming seizure by the length and depth of her exhale. It’s a learned cue, and just one of the many an aide taught Melissa during high school. These specific cues and her condition have necessitated the use of a one-on-one aid in her Individual Educational Plans (IEP) since elementary school. After students “age out”, an IEP switches to an Individual Specialized Plan (ISP) and the most critical word, “educational", begins to feel forever lost. Therapies addressed in IEPs such as communication, sensory and occupational are de-emphasized in ISPs. For many adults on the spectrum, the assistance of a dedicated aide is vital in assuring communication points are recognized and translated correctly. In meetings, “mental capacity” is a strong focus for county administrators divvying up services. Rather than creating an environment that continues to foster growth in communication, it becomes a point of contention, to see if there is a <em>need</em> for communication therapy, rather than a basic right for it. The first tour of the “medically fragile” program took place over a five-hour span. The day began with music. A staff member played the flute for two hours. Although music therapy is something we are fervently searching for in the transition process, two hours idle in a wheelchair is difficult for anyone to endure. My mother described the scene as “sedative”. Music was then followed by a “relaxation” period, where the “consumers” were again left in their chairs for another two hours. During lunch my mother observed an 8:1 ratio (consumer to staff member) rather than the state mandated 2:1. This is a program where clients need the most assistance with basic tasks, like eating lunch. Tours of the day program left us questioning how Melissa will attain the satisfaction, stimulation and socialization she requires to thrive, grow and learn in the next phase of her life. According to a study by the California Health and Human Services Agency, autism is the fastest-growing developmental disability with a growth rate of 1,148%. Melissa’s case manager has over 90 “consumer’s” future she manages on any given day. The Advancing Futures for Adults with Autism overview statement notes that the number of adults living with autism is on the rise due to the increase of individuals being diagnosed today. With a one-on-one aide unavailable, we will have to settle on the state standard 2:1 ratio for medically fragile programs. A special condition health plan will need to be drafted by a nurse that works for the day program with my mother and I present, so that we can voice our concerns. Then an approval process begins. The plan will float around administrators at our regional center to program directors at the day program. The regional center cannot fund her to start until this four-week process is complete. Thus, the waiting game begins, and until plans are approved and funding funneled, Melissa will remain at home. Melissa graduated on 19 December. Right before she crossed the stage, a member from the Office of Education made the announcement that it was now time for Melissa to receive her “certificate of completion”. A member of the audience, one of Melissa’s classroom peers, cried out, “Just call it a <em>diploma</em>!” And in that same spirit I plan to continue advocating for the services Melissa and her peer group deserve. Our editors' picks for the day's top news and commentary delivered to your inbox each morning. |