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Autistic-Led Innovation on Autism Communication Support Programs
5-year Report for 2014-2019
Quality Assurance and Monitoring (QAM) 2021-2022
Prepared for Assemblywoman Wendy Carrillo
Henny Kupferstein, Ph.D., Principal Investigator
ATTN Unai Montes-Irueste, Unai.Montes@asm.ca.gov
Office of Assemblymember Wendy Carrillo (AD-51)
It is with great honor that we can fulfill our civic duty by submitting this report. Thank you for your interest, and for your willingness to take action on this matter of great importance.
Henny Kupferstein, Ph.D.
The following images are described in captions. Sources are in the full report.
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Table of Contents
- Communication Support
Review of the Literature
Medical Necessity of Communication Support
- Nationwide Problem
Chronology of the Communication Support Programs
ACCES-VR Employment Outcomes: 5-year Review Table
- Demand and Outcomes
Flow Chart of Report Data
Sister Programs Expansion
- ADA Discrimination by State Programs
Case Study of First Recipient
Consumer Research Survey
- The A.5141 Bill History
Testimony that propelled this legislation
Dissolution of Inequitable Programming
APPENDIX: Our Organization Mission
February 8, 2021
This Quality Assurance and Monitoring (QAM) report focuses on 5-year outcomes of the Communication Support program(s) implemented in the State of New York from 2014 through 2019. Our core variables are gainful and meaningful employment outcomes in autistic adults and youth, financial self-sufficiency opportunities, and well-being markers. Forming linkages between each piece of legislation (A.5141) and state action adds significant value to the legislative intent of the Autism Action NY package.
The New York legislative fact sheet contains program outcomes. The intention is to underwrite the proposed “Communication Support” facilitated by on-call speech therapists in the State of California. In the past 3 years, we have continued to contact state legislators and newly elected officials to make Communication Support a nationwide effort.
- Most unexpected was the immediate budget provisions for a new transition for youth services that was implemented (Pre-ETS) with Communication Supports.
- Multiple sister programs (n=8) prioritized Communication Supports as defined in the legislation, making benefits and supports accessible through the Independent Living Centers (ILC) funded by ACCES-VR.
- The NY State Autism Spectrum Disorder Advisory Board (A.8635) who reports to the Governor, is utilizing our legislated model to prioritize interagency awareness and dissemination of Communication Support.
Most notably, disabled consumers in New York remained employed during the Covid-19 pandemic. The unemployment rate in New York peaked in July 2020 at 15.9%. Understandably, the pandemic affected millions of individuals with and without disabilities, yet autistic adults who were not in congregate care facilities prevailed. This report highlights a 123% increase in autistic employment rates. We originally projected a drastic change from 96% unemployment to 85% employed, contingent on Communication Support implementation.
- In 2014, only 2.8% of autistic adults met their ACCES-VR employment outcomes, essentially 32 individuals statewide, which prompted our legislative actions.
- Based on ACCES-VR 2019-2020 employment outcomes, an estimated 134 autistic adults were reliably employed and fared better during economic hardships than their non-autistic counterparts.
- During COVID19, ACCES-VR employment outcomes peaked at 90. 46% without Employment Support; an antiquated and inappropriate service that was replaced by Communication Support.
The outcomes exceeded our employment projections, demonstrating that autistic people who receive Communication Support, achieved greater employment outcomes than their disabled peers who continued using Employment Support & Job Coaching services. We encourage state agencies who receive tax incentives for diversity in the workplace to hire autistic talent.
Autistics are thriving amidst widespread economic hardships including the current pandemic, because they have a lifetime history of adapting to a changing world, hostile and confusing social settings, and sensory violations. Given the success of the New York pilot program, Communication Support should be strongly considered nationally, and replicated in California by 2021-2022.
- Communication Support boosts job opportunities and assists with maintaining a job once a job is secured.
- Communication Support is accessible, flexible, and amenable for changing times.
- Communication Support provided by a Speech Language (SLP) specialist is reimbursable for Telepractice support during shelter-in-place.
- Communication Support fulfills the ADA by effectively accommodating individuals with a communication disability inherent in an autism diagnosis.
- Communication Support levels the playing field to accessing meaningful and gainful employment for neurodivergent people.
- Communication Support facilitates the implementation of affirmative action as autistic adults experience due process.
Once each year, employment outcomes estimates (such as ACCES-VR consumer reports) are revised to reflect updated input data including new programs and demographics (ILC, Transition, etc.). As part of our benchmarking procedures, all state figures are reviewed, calculated for autistic demographics using the CDC prevalence report, and revised as necessary and then re-estimated. We used a time-series regression model to reduce the year-to-year variation in employment outcome rates and sister program consumers served by reducing variation caused by sampling errors and other components of statistical irregularities.