Help Pass Bill A05141 – VR Communication Support for Autistic Consumers

Left to right: Rebecca Botta-Zalucki, Assemblyman Santabarbara, and Henny Kupferstein, holding the signed proposal.

Left to right: Rebecca Botta-Zalucki, Assemblyman Santabarbara, and Henny Kupferstein, holding the signed proposal.  Read the proposal

URGENT ACTION: Contact your assembly members and help us get our VR communication support bill signed into law. We need more sponsors in the state senate who are interested in autism legislation.

[Click to read more about this bill]
[Follow this bill on HennyK / FaceBook]

Here’s what you’ll need to do:

  1. Contact your state assembly person and ask them to support this bill (list here)
  2. Ask if they are willing to co-sponsor this bill.
  3. Share your personal anecdotes of what this bill means for you and/or your organization.
  4. Share this page on social media, with colleagues, friends, and family. We need the word to get out!

Step Up Your Advocacy Skills!

  1. Contact NYS Education committee’s chairwoman Catherine Nolan and ask her to support this bill which is now in the hands of the committee.
  2. Contact the members of this committee (list here), and ask them to co-sponsor this bill.

Remember:

  • Share personal reasons as to why this bill is critical.
  • Scroll down for sample letters and a list of talking points.

Sample Letter in Support of NY Bill A05141

Dear Assembly(man/woman),

It’s time for New York to join the long and growing list of states that support autistic adults in sustaining meaningful employment.  I encourage you to support and move forward New York State Assembly Bill A05141. This piece of  legislation would require Acces-VR (Vocational Rehabilitation) to provide communication support services for consumers with social pragmatic language disorders related to Autism.

This issue is extremely personal to me and many other voters who care deeply about our financial independence.  Many autistic consumers hold advanced college degrees and require assistance in sustaining a working relationship with a boss, supervisor, and colleagues. Autistic consumers have a medical necessity for communication support in lieu of task training.

Appropriate support is affordable and available. We no longer need to permit job coaching to continue the often undignified and dated act of skills training. It’s unsettling that it remains perfectly legal to consolidate the VR budget for job coach specialists, some with GEDs, to teach consumers who have advanced degrees and experience. I urge you to support Bill A05141 and vote for it.

Sincerely,

Your name

Sample Talking Points in Support of Bill A05141

  • Social pragmatic language disorders are now a part of the autism diagnosis in the DSM-5.  This also affects individuals who are verbal and highly articulate.
  • 29,000 individuals serviced by Acces-VR in New York, only 4% (1,168 individuals) were autistic consumers. Only 2.8% achieved employment in 2012 or 32 individuals statewide. (Source)
  • Medicaid is now required to pay for speech therapy if there is an autism diagnosis, but only up to age 21. This oversight leaves adults without services and ultimately destitute.
  • Under current federal law, people who receive their autism diagnosis in adulthood are not eligible for OPWDD and cannot receive speech and language services through medicaid or HMO.
  • Intellectual disability is not part of the diagnostic criterion for autism spectrum disorders in the DSM-V. In fact, above-average IQ is expected.
  • The diagnostic criteria for Language Disorder (315.39) is for difficulties which are not attributable to hearing, sensory, motor dysfunction, or another medical condition and are not better explained by intellectual disability.

 [More about this bill] [ Read the proposal ]

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