October 3, 2018

Stephanie PowellMarin County, California – Stephanie Powell’s younger sister Melissa 22 has Rett Syndrome which is a neurodevelopmental disorder that lies on the autism spectrum. Melissa is non-verbal and can suffer from seizures.

Stephanie explains her frustrations over how high school students with Special Educational Needs (SEN) do not ‘graduate highscool’ but ‘age’ out of the program while the diploma itself is referred to as certificate of completion

Stephanie tells in the Guardian article how their mother is Melissa’s carer and that she now faces the task of trying to find a specialist day program for Melissa where they live in Marin County, California.

Stephanie says in the article:

“She found only one in the county (which) 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.”

Due to Melissa’s seizures she has a one to one aid included in her Individual Educational Plan (IEP).

However now that she has ‘aged out’ she will switch to an Individual Specialized Plan (ISP). Stephanie describes her worry concerning this change:

“The most critical word, “educational”, begins to feel forever lost.”

She continued:

“Therapies addressed in IEPs such as communication, sensory and occupational are de-emphasized in ISPs.”

Stephanie also explains in detail in the Guardian article a visit to one of the ‘medically fragile programs’ in which she tells of how the adults were described as ‘consumers’, that adults were left to sit in wheelchairs for hours listening to music and having relaxation therapy and that the staff to consumer ratio was not the mandatory state ratio of 2:1 but 8:1.

Stephanie has concerns over this next phase of life for her sister.

“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.”

A one to one aid will be unattainable for Melissa and Stephanie states that they will have to settle on the state standard ratio of 2:1 and that the special condition health plan will have to include input from herself and their mother so that their concerns will be heard and addressed.

Stephanie ends the article by describing her sister’s graduation. When it was announced that it was time for Melissa to receive her ‘certificate of completion’ a member of the audience cried out ‘Just call it a diploma!’

“And in that same spirit I plan to continue advocating for the services Melissa and her peer group deserve.”

The full article in The Guardian can be read here

About the author 

Jo Worgan

Jo Worgan is a published author, writer and blogger. She has a degree in English Literature. She writes about life with her youngest son who is on the autistic spectrum. Jo is also a freelance columnist for the Lancaster Guardian. ‘My Life with Tom, Living With Autism‘ is her second book and a culmination of her blog posts, and available on Kindle now, along with her first book, Life on the Spectrum. The Preschool years.


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