Help bring medically necessary Communication Support to your state

There are an estimated 1 million autistic adults in California equaling that of the 1-million estimated veterans in the State. 96% of autistic adults are under- or unemployed.
 
Help bring medically necessary #communicationsupport to your state. Help advocate using this fact-sheet.

Autistic Communication Support – 5 year Outcome Report (2014-2019) link to Accessible PDF of the report

February 19, 2021@4:59:22 CA State Senate subcommittee 3 on health heard our public comment on #communicationsupport for #autistic adults. FULL 3 MINUTES ON THE RECORD with compliments.

Call to Action on Social Media
New York:
  1. Contact the Acces-VR State Rehabilitation Council (SRC) accessrc@nysed.gov and 518-474-2714 for the Commissioner’s office.
  2. Ask Diane Woodworth accessrc@nysed.gov to place our report on their March calendar with SRC public hearing. Requesting 90 minutes on the agenda with handout. 
  3. Ask Deputy Commissioner Kevin Smith (518) 474-2714 accesadm@mail.nysed.gov to meet with us to discuss our report with Acces-VR

California

  1. Contact your Assemblymember and ask them to co-sponsor the #communicationsupport program for this 2021-2022 budget year.
  2. Email and ask them to prioritize #communicationsupport for #autistic #adults for this 2021-2025 budget!
    Subcommittee 3 on Health and Human Services
    Senator Susan Talamantes Eggman (Chair)
    Senator Melissa A. Melendez
    Senator Richard Pan
    Standing Committee on Budget and Fiscal Review
Pennsylvania…TBA

Virginia…TBA

Texas…TBA
Send email to info@doogri.org if you are able to collaborate in this national and global initiative.

Autistic Communication Support – 5 year Outcome Report (2014-2019)

Help bring medically necessary Communication Support to your state

Help bring medically necessary #communicationsupport to your state. Help advocate using this Main fact-sheet clickable on top.

Doogri Institute     
501(c)(3)  non-profit

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.

Sincerely,
Henny Kupferstein, Ph.D.

The following images are described in captions. Sources are in the full report.

Link to Share on FaceBook
Link to share on FaceBook

Link to accessible Flow Chart of Report Data  as single-page PDF
Click image for accessible Flow Chart of Report Data  as single-page PDF
ACCES-VR Employment Outcomes: 5-year Review Table
Outcome Table: This table illustrates that Consumers who achieved their employment goals without employment support programs (Navy Bar 1) increased from 70% in 2015 to 90% 2020. Consumers who achieved their employment goals with employment support programs (Teal Bar 2) reliability decreased from 27% in 2015 to 9% in 2020. Increase in Communication Support negatively correlates with a decrease of Employment Support programs outcomes that are inappropriate for this population. The data show an inverse relationship between the amount of employment support and communication supports. Based on these findings, ACCES-VR consumers can be expected to continue to meet the same outcomes as their peers, who are increasingly meeting employment goals without employment support. By deduction, this indicates a direct benefit of the Communication Support sister programs launched in the state.
The New York State Department of Health NYSDOH ASD Guideline conducted an in-depth review of autism studies and their focus category.
The New York State Department of Health NYSDOH ASD Guideline conducted an in-depth review of autism studies and their focus category. Breakdown of current research domains by focus category: Among the 177 articles reviewed, the 3 most cited domains are Communication (30%), Social (26%), and only 14% on Behavior Reduction, or less than half of Communication priorities in autism research today. Anxiety and Cognitive research studies were at 0% in this report, which indicates that with Communication Supports only, behavior and mental health concerns may be reduced.
State funded ILC (Independent Living Center) Consumers Served
The ILC Consumer Service Record (CSR) indicates an 50% increase in demand, doubling over 5 years.

Table of Contents

  1. Communication Support

Review of the Literature

Medical Necessity of Communication Support

  1. Nationwide Problem

Chronology of the Communication Support Programs

Underserved Populations

ACCES-VR Employment Outcomes: 5-year Review Table

  1. Demand and Outcomes

Flow Chart of Report Data

Sister Programs Expansion

  1. ADA Discrimination by State Programs

Case Study of First Recipient

Consumer Research Survey

  1. 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.

  1. Most unexpected was the immediate budget provisions for a new transition for youth services that was implemented (Pre-ETS) with Communication Supports. 
  2. 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. 
  3. 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.

  1. In 2014, only 2.8% of autistic adults met their ACCES-VR employment outcomes, essentially 32 individuals statewide, which prompted our legislative actions. 
  2. 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.
  3. 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.

 

  1. Communication Support boosts job opportunities and assists with maintaining a job once a job is secured.
  2. Communication Support is accessible, flexible, and amenable for changing times.
  3. Communication Support provided by a Speech Language (SLP) specialist is reimbursable for Telepractice support during shelter-in-place.
  4. Communication Support fulfills the ADA by effectively accommodating individuals with a communication disability inherent in an autism diagnosis.
  5. Communication Support levels the playing field to accessing meaningful and gainful employment for neurodivergent people.
  6. 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.

…….CONTINUED

Sarah Travel: Accessible and Sensory Friendly Live Zoom Tours

Experience the beauties of Kazakhstan in any season. We are the 9th largest country in the world, and borders China and Russia. Our accessible and sensory friendly live tours are with an English speaking tour guide.

  1. Each Zoom call has closed-captioning enabled, and we can video-record our trip for your memories ($39 *unpredictable resolution).

Our Live Virtual tours with English-Speaking guide is catering to your interests of Culture, language, history, and foods. From desert sand dunes to ice fishing, every week of the year brings a seasonal surprise to our destinations.

$120 Kazakhstan: Almaty City Tour – Live Zoom 1.5 hours (97 minutes) with optional $25 extra 30-minute add-on for a full 2:00 hours to explore more of your interests. Each additional person in your group joins for 35% discount (only $78).

Book A Tour button

    1. Meet-n-Greet your guide Saeed in the Paniflov park (2 minutes). I will introduce the Paniflov park in honor of Panfilov soldiers of the 1075 regiment of the 312th rifle division (5 minutes) during WWII.
    2. Arrive at the Ascension Church  also known as Zenkov Cathedral designed by Andrei Pavlovich Zenkov, and was completed in 1907. The Russian Orthodox cathedral is located in Panfilov Park in Almaty, Kazakhstan. The church was built without any nails, and was one of the only buildings that survived the 1911 earthquake in Almaty (10 minutes tour inside and out).
    3. Right outside, we explore the World War II monument “Feat” in Park of the 28 Panfilov Guardsmen including the Eternal flame at the park during Victory Day celebration, 9 May 2012. (20 minutes outside tour)
    4. A short 2-minute walk to the Kazakh Museum of Folk Musical Instruments. The wooden building was erected in 1908, simultaneously with Ascension Cathedral. The military leadership of the Turkestan governor-generalship once met here for ceremonies and state receptions. In 1980, it was converted to the musical instruments museum, named after the Great Kazakh musician of 19-20th centuries Ykylas, who promoted the purity of folk culture and preservation of various national instruments. Today, there are more than 1,000 items of instruments,  divided into 60 types of Kazakh national musical instruments. (30 minutes)
    5. Stop right outside at the Burger King and KFC. We will explore the menus, and I will teach you how to say your virtual meal, and you can see our dollars. 
    6. 5-6 minute walk to visit the Green Bazaar (15 minutes walk-through including the market where you can guess the parts of exotic animals at the butcher)
    7. Walk to the 75+ years old  Rakhat Candy Factory  (5 minutes). See the building and enter the showroom to explore all the 1000+ chocolate products on display. There is no bargaining. Before covid, we offered an  indoor factory tour. 
    8. Followed by 10 minutes of Teatime with your guide and closing questions.

Communication Support 2021-2050 Legislative Budget Proposal

Autism Benefits and Poverty in New York, 2016
Bipartisan friendly legislation
In 2015, a group of autistic professionals collaborated for legislative advocacy purposes to promote Communication Support for autistic people as a mandate. Together, we authored and introduced 5 bills in the State of New York. Our Autism Action 2016 proposal resulted in the bipartisan passing of ACCES-VR (A.5141) communication support; Autism Spectrum Disorder Advisory Board (A.8635); Autism Home Loan Program (A.8696); A Communication & Technology Bill of Rights (A.8708); Autism I.D. Card (A.8389). 

Happening Now

During COVID19, our advocacy expanded to implementing the ADA requirement for Effective Communication to be provided by default in each state. This federal law is meant to accommodate Americans who have vision, hearing, or speech disabilities (“communication disabilities”) and use different ways to communicate. However, effective communication for autistic people may require closed captioning, and or time to communicate with someone who uses a communication board or device. Most affected are autistic adults who require communication support to access county benefits, state agency supports, medical care, education and employment.

When communication support is implemented in your state, a law enforcement officer will be able to conference-call a specialist when they encounter an autistic person. The same default response will be applied to a client who is applying for benefits, is asking for accommodations from their boss or university, and a person who needs to engage with the DMV. In other words, identifying as autistic will trigger the ADA implementation in your state as a covered Communication Support.

What is Communication Support?

  • If a state employee accommodates the need for effective communication, they are also violating state law when they replicate the standards of the profession for speech, language, and hearing pathologist.
  • Only a speech therapist is trained in social pragmatic language disorders as part of their mandatory degree requirements, and their overseeing body has already provisioned telehealth for shelter-in-place during COVID19.

Follow out hashtag #communicationsupport on FaceBook and social media to learn about our progress and respond to Calls for Action. To volunteer, please contact info at our doogri.org address.

Follow actions taken in each state below, and follow #communicationsupport on FaceBook for calls to action.

CA Bipartisan Budget Proposal submitted (12/15/20) to all 16 members of the Health Committee Primary jurisdictions are health care, health insurance, Medi-Cal and other public health care programs, mental health licensing of health and health-related professionals, and long-term health care facilities

Please email info at our doogri.org address to volunteer or support our legislative advocacy.

Community Classes & Publicly Available Training/Coaching

The Doogri Institute maintains a network of professional staff. We provide community habilitative services and coaching to meet the individual needs of all clients who are OPWDD eligible. Individuals who are on the Self Direction program may benefit from our broker service to facilitate reimbursement for services rendered.

Services provided through the Doogri Institute:

  • Classes available to the general public in any subject area that relates to a person’s valued outcomes (Art, Dance, Exercise, Cooking, Computer Training, Etc.)
  • Sessions with a private trainer (physical education/exercise) may be covered as long as the service relates to a valued outcome).
  • Classes must be related to a habilitative need in the individual’s person‐centered plan and not just for recreational purposes.
  • Classes must be non‐credit bearing; IDGS funding is for non‐matriculating students.   
  • Not to exceed the published fees as outlined in the entity’s published course fees.

Example of services available:

  • Therapeutic piano lessons, private and community music classes – Doogri Institute Center for the Arts, Rockland County, NY near Monsey, Spring Valley, and Lakewood community. 
  • Academic coaching, intervention facilitator, community independence, mobility navigation, social community training, and self determination towards independent living skills. Located at the Doogri Institute Center for the Arts Monsey office, or video-conferencing.

Frequently Asked Questions

  1. Does your child have a developmental disability from birth? Is your child OPWDD eligible?
  2. Does your child need support for making academic, social, and emotional strides?
  3. Does your child require coaching to access community classes, special skills group sessions, or personalized and individualized sessions?
  4. Is your child in an appropriate setting and steadily meeting goals and objectives?
  5. Do you wish to supplement your child’s service program with tutors, coaching, and specialized support personnel as a reimbursable service?

Contact the Doogri Institute today to learn about the community classes and publicly available training and coaching. We have the staff available to deliver the Individual Directed Goods and Services (IDGS) and supports approved within the individual’s habilitation plan. Call our broker today to get started with Self Direction.

 

Our monthly progress reports include how these services and supports helped:  

  1. Improve independence at home and in the community
  2. Live safely at home
  3. Be more involved in the community
  4. Improve health
  5. Engage in meaningful activities such as: Work towards the following goals/valued outcomes