The Doogri Institute conducts research to assist in the design and implementation of arts training and music community. All Doogri researchers are leading experts in their field, with critical research augmented by lived experiences.
Please Register: $1 per Zoom device. We will have captions enabled and chat for accessibility. We welcome AAC users. Send your feedback on your SDP process until today to info@doogri.org and we will discuss as peers. Say YES to Self Determination, say NO to misappropriation.
Did you know that the State Council is in charge of sharing information with the DDS Committee, but if one doesn’t want to share with the other, your Regional Center counselor will not have any actual concrete information to tell you?
Take a stand and show the state government that consumers and their families have been forced to research trials by fire, and suffer the consequences of misappropriation. We have a right to the $10-billion+ and today is your day to know how to access this. Until this process is not in compliance with the ADA, the Lanterman Act is not protecting us from labor law violations. We are being asked to do their job, but we are not allowed to collect $2,500 for our INDEPENDENCE!!! Join to discuss.
San Diego only enrolled 43 people, despite a lottery slot of 300.
Suzy Requarth is the person tasked with “implementation funds and spending plan.”
If the Regional Center does not fulfill this mandate, they will have to relinquish their budget to approved SD plans. <– no wonder they’re avoiding your calls
If you would like to advocate for San Diego to implement more efficiently, please write to your Representatives and attend committee hearings.
Get involved with the committee who makes decisions for us: Self-Determination Local Advisory Committee Meetings are held the 3rd Tuesday of every month. Schedule is here
In October 2013, California Governor Jerry Brown signed SB 468 into law creating a statewide Self-Determination Program that offers regional center consumers a voluntary alternative to the traditional system and more control over the services they receive and the individuals who support them. Starting July 1, 2021, all consumers can switch to Self Determination.
..but wait… For current regional center consumers, the budget will equal 100% of the amount of the total purchase of service expenditures made by the regional center during the past 12 months.
…um, so…If your case manager or regional center supervisor says that they are still (1) unsure and (2) “waiting to find out funding availability” and (3) not providing clear instructions, please write to us now. info@doogri.org
Here’s what is supposed to happen next for you.
We learned about an IF (Independent Facilitator). We asked if a consumer can get the $2,500 from the budget if they complete the work. According to district managers, you cannot pay yourself, and you have to pay others; there is no mention in the State order (Dec 2018) about this ad hoc prohibition.
We are looking into training our autistic clients to have job opportunities by becoming an IF for their peers! Stay tuned.
IF – Independent Facilitator
An IF is not required for your next step, but recommended. Their role is to sit in meetings with your R.C. team. They are supposed to negotiate rates and service codes for your budget. They can advocate for you to get the best possible budget based on what you know you need. If you expect your service coordinator to be sluggish, non-responsive, or cruel with their service agreement rate disclosures, then an IF is a good idea for you!
A Financial Management Service (FMS) is the only required service for participants in Self-Determination. You can find a list of the FMS agencies that San Diego Regional Center partners with here.
about 10 companies listed, check out the negative yelp reviews.
3 Different Models
There are actually 3 models available for Self Determination, but most agencies will offers 2.
Bill Tier Model – very similar to traditional services with regional centers. They choose the agencies they know and make their own suggestions.
Sole Employer Model – You choose your own agencies and personnel. The FMS responsibility is to collect the w-2 forms, calculate the tax withholdings, and send the paychecks. Consumer’s responsibility is to enter the GROSS rate, not the NET into the budget, since we pay the tax withholdings from the overall budget. The deduction is 14.8%. If you’d like to calculate that, you would have to say, “If you want $15 per hour, we will have to calculate 15*1.48 = 22.” $22 is then the gross rate entered into the budget.
The FMS will send you forms to complete, and set an appointment for your initial meeting.
We recommend that you ask for a zoom call and complete the forms together.
They will offer paper mail forms
they are amenable to digital processing for efficiency and disability accommodations.
Expand Your Network
Please join our email list (email us, list@doogri.org) to receive news, updates, call to action, and interact with other list members via email
What does this #THRIVINGactually mean? My Post-Group Reflections Live is just a free flow of consciousness. The most important part for me as a researcher was to document the progression of what happened and how it happened.
How did the conversation start? Where did it go to and why? Evaluating the tangents and celebrating it rather than pathologizing like, “Oh my god they were so disorganized, they were off-topic, there was no agenda, I didn’t know socially what I was supposed to do, supposed to say.”
So it started off with people coming in one at a time with their camera and mic issues and just to make sure that everybody was engaged. We started saying, “Hey, where are you located? Where are you now? Where are you now?” Oh, and then it all started from:
“Where are you?”
“Kazakhstan”
Somebody else, “Oh, I know about that. I’m in Madison, Wisconsin.”
I said, “Oh I know about that. I have a friend there.” So then we all take a moment to look at the person who’s in Greece right now.
And the overall comments, “Oh my god, is it almost midnight for you?” I’m feeling deeply for people who are here for one reason to thrive together.
We started talking about that I’m here in San Diego on a beautiful Saturday morning, fresh out of the shower. And I’m telling people, as you know, a humorous thing, “Just enjoy watching my hair dry, let that be your entertainment if we can’t even get all our cameras all lined up.”
Things we’ve talked about are,
Why do we dress up & wake up? Why are we resilient people & do what we do?
We do because as I shared, “I dress for the woman who greets me in the mirror every morning.”
Internalized Oppression.What do you celebrate for yourself?And it turns out that a lot of the participants are also autistic adults when they joined our group so they were saying that pretty much this whole self-care thing, was knocked out of them because of being disadvantaged byfamily dynamics, neurodivergence, whatever makes you be the different person, the oddball, the one that stands out the, one who can’t be compliant the, one who can’t organize their behavior.
Asexuality. I asked a friend, who was on the call, “What is your reaction when i first told you I’m asexual?” The response was, “You know, I can’t understand it because I don’t have that life” and that made everything so much more relatable. We were able to talk about sexuality then we laughed about it, “So, uh, you gotta go because your cat is biting you right now. Are you saying you’re a cat person?” I said. My friend replied, “No, I like dogs, I like everything, I like all the animals.” I said, “Oh no no no no no, in a perfect world you must declare, ‘dog person’ or ‘cat person’.” So we decided that they were pet fluid, pet non-conforming.
And in that spirit, I brought the screen sharing of the 3-minute Isolation Video that I made with my friend Nicky in the UK and we did it in the first week of shelter and place because we wanted to show: autistics are thriving in a pandemic…and now what are you going to do about it?
Is celebrating one year in covid-19, that we have been thriving in isolation, autistic people and other people who have previously been called maladaptive are thriving but the problem is that they encounter a society. Some kind of shame like you can’t talk about it because the uncle is dying so “Why are you having a zoom party?” Anything that made the world more accessible like a shelter in place masks all of this became a bonus for functioning and when that bonus for functioning, you start being called out for it as the crazy one, the different one, the non-compliant one. My happiness is not a behavior problem. So after I shared the 3-minute video that we made about this joke on society
Medical Challenges that People have that Contribute to Isolation. If you have chronic pain, if you have a mental health disorder, if you have something going on in your life but you can’t talk about it right now because people are dying from a pandemic! For christ’s sake–that is the reaction that you get, then what is your support network.
Autistic and Hallucinating – Autism Psychosis support
We relieved somebody’s first trip in their psychotic break and we talked about all of the things that they experience like being obsessed with alliterations like the word, “fear” f-e-a-r means to be fearful or afraid while the word f-a-i-r means fairness, Is it fair to feel fair, and then they thought about f-a-r-e, the fare, the amount that you pay for a bus. Getting lost in this world, is that an autistic stim party?
Upbringing Difficulty with Empathy, society’s idea of what empathy is and isn’t, ‘Are you psychotic?’ ‘Are you autistic?’ ‘Are you a sociopath?’ That can’t feel but at the same time you know, if there was a truck that ran over my ex-husband and that was the end of my pain or my problems, I wouldn’t feel any pain or suffering for his body at the moment of impact, that’s not sociopathology, that’s quite literally me having a grip of my anger, exactly, being able to get homicidal about it in my mind and still stay regulated.
I love telling people that I do Anti-social Science Research Psychology. The research, scientifically, about society. I love it, society and the abnormality of the mind, society and altered states, society and othering. The indigenous knowledge systems we have are not being adequately and authentically portrayed and putting everything underneath.
“Oh I have chronic pain but my grandfather is in the ICU, so now we have to visit even though I’m having a miscarriage right now and I’m wearing four pads. I have to go to the ICU because the family expects it.”
All these expectations being able to find yourself in a pandemic where you find your autonomy, your self-sufficiency that in itself is thriving. We’re not making fun of people who are not functioning we’re just saying who are you calling maladaptive now.
Differently-Stoned Sober Sitters Mental Health Cannabis Safety
Mania and Psychosis. One of the participants shared and relived an entire mania trip from beginning to end like looking at the arms, seeing different things, and imagining the people from the Bronx breaking into the house. How many weeks? How many people did you have to talk about it until you realized that you were in an altered state? Even in the hospital.
Suicidality. Autistic people have a completely different way than we see ideation, that we see mental illness, we see hallucinations. We’re just peace, we identified in the group, we’re just people who really see this touchy-sticky very differently. We’re just living in a state and if we could all live in that state together in a safe space, the group became a wonderful place for us to share and there was a lot of sharing about different things.
And what a beautiful thing, one of our members of the group said, “I identify myself as a usual person with unusual experiences.”
So with that said I’m going to post the isolation video that I made one year ago, the first week of sheltering place, with my dear friend Nikki in Cambridge UK. I’m in California, in lockdown. She’s in the UK in lockdown with an also autistic husband and their life is a party and they don’t apologize. They’re, as a couple, philanthropists often go and do charity gigs where the husband and wife throw pies in each other’s faces to raise money for kids who are sick and cancer.
Redefining what thriving means giving yourself permission to thrive and in the end, we talked about how this group is in alignment with our organizational mission so I asked people to go to the Doogri Institute website because if you just take your time and scroll through it get lost in a rabbit hole, enjoy the videos, look at the pages.
You’ll be able to follow me on every platform and of course, register for the next event, and as usual part of our karma clause with our organization is that we provide for the greater good because we want to help others-help others. In that spirit we will continue your bring a friend, your plus one is always free, all right? So let’s grow this family after this call you will see all of my links in the description.
Resource shared by a member who is also a mental health clinician:
Excerpt from: Marie Lenormand (2018) Winnicott’s theory of playing: a reconsideration, The International Journal of Psychoanalysis, 99:1, 82-102, DOI: 10.1080/00207578.2017.1399068
“Playing is itself a therapy,” Winnicott (1971a) asserts, in what has now become a famous turn of phrase from Playing and reality (p. 50). This commendation of play marks a milestone in psychoanalysis. According to him, “to arrange for children to be able to play is itself a psychotherapy that has immediate and universal application, and it includes the establishment of a positive social attitude towards playing” (p. 50). Playing, which cannot be dissociated from creativity and a sense of “enjoyment”, is an “intensely real” experience that has intrinsic therapeutic virtue, that is to say it is capable of promoting “self-healing.”
This extremely powerful idea is the basis of a solid optimism that runs right through Winnicott’s work from the beginning of his practice as a paediatrician with babies and young children, up until one of his last books published in the year he died, Playing and reality (1971a). It could even be said that the extraordinary vitality that he managed to breathe into his work, and which probably constitutes one of his most original contributions to psychoanalysis, stemmed from this foundational view of play. The luminosity, freshness, and hope aroused by this Winnicottian axiom stand in sharp contrast with the tragic dimension in Freud’s work, the unveiling of chthonic powers in Kleinian theory, as well as the Lacanian division of the subject.
Winnicott, D. W. 1971a. Playing and Reality. London: Routledge.
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.
Contact the Acces-VR State Rehabilitation Council (SRC) accessrc@nysed.gov and 518-474-2714 for the Commissioner’s office.
Ask Diane Woodworthaccessrc@nysed.gov to place our report on their March calendar with SRC public hearing. Requesting 90 minutes on the agenda with handout.
Ask Deputy Commissioner Kevin Smith (518) 474-2714 accesadm@mail.nysed.gov to meet with us to discuss our report with Acces-VR
California
Contact your Assemblymember and ask them to co-sponsor the #communicationsupport program for this 2021-2022 budget year.
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.
Click image for accessible Flow Chart of Report Data as single-page PDFOutcome 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. 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.The ILC Consumer Service Record (CSR) indicates an 50% increase in demand, doubling over 5 years.
Table of Contents
Communication Support
Review of the Literature
Medical Necessity of Communication Support
Nationwide Problem
Chronology of the Communication Support Programs
Underserved Populations
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 servicethat 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.
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.
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).
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.
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).
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)
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)
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.
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)
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.
Followed by 10 minutes of Teatime with your guide and closing questions.
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 CommitteePrimary 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.
Budget Committee: Alex Walker (12/22/20) with D – Philip Y. Ting (Chair), Spencer Street (12/22/20) with R -Vince Fong (Vice Chair), Katja Townsend with R – James Gallagher, Kerida Moates with R – Kevin Kiley
We learned about an IF (Independent Facilitator). We asked if a consumer can get the $2,500 from the budget if they complete the work. According to district managers, you cannot pay yourself, and you have to pay others; there is 
