Noticing a Communication Difference in a Child

You Know Your Child Best

If something about your child’s communication, behavior, or development feels different, trust that feeling.

Early signs may include:

  • Not responding to their name
  • Not answering/responding when spoken to.
  • Limited babbling or talking for their age
  • Difficulty understanding directions
  • Limited eye contact or interaction
  • Trouble playing or engaging with others

These signs do not automatically mean a diagnosis.
But they do mean it’s time to learn more.

Step 1: First, Rule Out Hearing Loss

Start with a hearing test (audiogram). Those are performed by audiologists, and even a mobile hearing test clinic that might be free in your community. Your pediatrician can refer your child for a hearing test, and all health plans including Medicaid pay for this assessment.

Why this matters:

  • Hearing differences can look like communication delays
  • You cannot assess language without understanding hearing
  • This step must come first

Step 2: Seek a Developmental Evaluation

If hearing is normal, ask your pediatrician for a full evaluation and developmental screening.

This may include:

  • A psychologist (learning, behavior, development)
  • A speech-language pathologist (SLP) (communication)
  • An occupational therapist (OT) (daily function and access)
  • Other specialists if needed

This evaluation looks at your child as a whole.

What Professionals Look For

Even without a specific diagnosis, professionals assess:

  • How your child communicates (or attempts to)
  • How they understand language
  • How they engage with others
  • How they play and learn

The goal is not just a label; it’s understanding how to support your child.

How Allied Health Support Works

Professional support is about more than just a label; it is about understanding how your child interacts with the world and providing the tools they need to thrive. Even without a specific diagnosis, professionals assess how your child communicates, understands language, engages with others, and learns through play.

Speech-Language Pathology (SLP)

Focus: Communication

An SLP helps your child:

  • Express wants and needs
  • Understand language
  • Participate in play and conversation

Tools may include:

  • Pictures or communication boards
  • Sign language or gestures
  • AAC (communication devices)
  • Simple routines like “my turn / your turn”

Communication is more than speech.
It includes any way your child connects.

Occupational Therapy (OT)

Focus: Daily life participation

OT helps your child take part in:

  • Playing
  • Learning
  • Socializing
  • Self-care

OT may support:

  • Sensory needs (sound, movement, textures)
  • Motor skills (hands, posture, movement)
  • Attention and engagement
  • Changes to the environment

The “Uno” Analogy: How They Work Together

Imagine your child is playing a game of Uno:

  • OT helps your child sit, hold cards, and stay engaged
  • SLP helps your child understand rules, take turns, and communicate

Both are Allied Health Professionals covered by most insurance and Medicaid. While school-based services focus on educational goals, private services focus on health and medical needs to meet developmental milestones.

Understanding ADLs vs. IADLs

  • ADLs (Activities of Daily Living): Fundamental self-care tasks (bathing, eating, dressing) required for basic survival. These are often the first skills impacted by developmental conditions.
  • IADLs (Instrumental Activities of Daily Living): More complex tasks (managing money, shopping, transportation) needed for independent living.

Understanding Services: School vs. Medical

Both SLP and OT are Allied Health Professionals reimbursed by Medicaid and insurance.

  • In School: Services focus on education-related tasks and academic goals.
  • Outside School: Services focus on medical and health needs to meet developmental milestones. This impacts ADLs (Activities of Daily Living, like eating/dressing) and IADLs (complex tasks like managing tools or transportation).

The Goal: “Person-First” approach

When support is done well, learning feels natural and progress happens through connection. Your child has a right to:

  • Communicate in ways that work for them (SLP).
  • Participate in age-appropriate activities (OT).
  • Be seen and supported as a whole person—not just a diagnosis.

The Doogri Approach: Building Connection First

We believe in an alternative to “fixing” problems; we focus on connecting with the child first.

  • Interests as a Bridge: We use a child’s favorite topic to build participation. Withholding an interest as a “reward” creates compliance; sharing it creates connection.
  • Relationships over Rewards: Engagement grows through meaningful interaction, not behavioral conditioning.
  • Rights of the Child: Your child has the right to communicate in ways that work for them and to be seen as a whole person, not just a diagnosis.

We are an autistic-led non-profit. We provide a curriculum as resources for autistic adults. We ask that parents engage autistic adults in their community in a working contract. The adult will act as a peer support specialist to your child. They will introduce cognitively enriching topics and develop a working relationship with your child as a partner in their identity development. 

A “Person-First” Philosophy: Interest as a Bridge 

At the heart of all these therapies is a fundamental shift from a “problem-first” approach to a Person-First Approach. In this model, the specialist does not need to identify a “deficit” to begin support. Instead, they enter the child’s world through Cognitive Enrichment.

  • Validating Interests: A child’s deep interests, whether they are fascinated by numbers, specific languages, or a favorite character, are treated as valid, meaningful, and central to who they are.
  • Connection Over Compliance: We believe that when a child’s interest is withheld or used only as a “reward” for doing work, the interaction becomes compliance-driven. However, when that interest is shared and celebrated, the interaction becomes relationship-driven.
  • The Interest as a Bridge: Rather than making a child “earn” what they love, we use what they love as a bridge. This builds rapport, establishes trust, and facilitates a meaningful entry into any activity.

“Some approaches treat what your child loves as something they have to earn. Our approach uses what your child loves to connect with them and help them engage.”

By using a child’s natural passions as the foundation for development, we aren’t targeting missed milestones as a behavior problem. We are building their identity and ensuring their right to a meaningful, self-directed life. Continuing from that person-first philosophy, we can see how the shift from “compliance” to “connection” changes the very nature of learning and growth.

From Rewards to Rights: The Story of the Interest 

To understand this shift, consider a child who is fascinated by car brochures. Under a traditional, compliance-based model, that child might be told they can only look at their brochures after they finish a difficult task, such as a math worksheet. In that scenario, the child is simply holding out for the reward; they often “hate” the activity itself and are merely performing to get to what they actually value.

In our approach, we integrate the interest into the educational encounter itself. The car brochures aren’t the prize at the finish line; they are the vehicle for the journey. We use them to talk about colors, to practice fine motor skills by turning pages, or to facilitate social exchange. We laugh about the names manufacturers give to cars, and ponder the meaning of the car logos. When interest is essential to the activity, the child isn’t just “working”, they are engaging.

Upholding the Rights of the Child

This shift is rooted in a fundamental belief: your child has inherent rights at this stage of their development.

  • The Right to Access (OT): In terms of “occupation,” your child deserves to meaningfully access age-appropriate activities. It is their right to play, learn, and exist in spaces that are adapted to their needs.
  • The Right to Support (SLP): In terms of communication, your child is owed the professional obligation of support. They deserve the tools and skills necessary to make an interaction meaningful.
  • The Right to Peer Support (PSS): Person-centered and individualised, using lived experience to provide empathy as a support mechanism, to manage life’s natural and developmental stressors, and emotional regulation through cognitive enrichment.

Inherently Rewarding Participation

When these supports are in place, we no longer need to “engineer” motivation through external incentives. Participation becomes naturally rewarding. To ensure this child-centered, person-first philosophy is protected and standardized across the field, there is a growing movement toward advocacy and structural reform within the professional community. Supporting a child’s right to meaningful participation requires a workforce that is equally supported and empowered to maintain professional integrity.

What Should You Do Next?

✔ Get a hearing test (audiogram)
✔ Request a developmental evaluation
✔ Ask questions and stay involved
✔ Learn strategies you can use at home
✔ Connect with professionals who see your child as a whole person

Dr Henny’s Self Determination Peer Support for Consumers in California

Yay, I’ll see you on zoom this weekend.

 

Dr Henny’s Self Determination Peer Support for Consumers in California

Every week on Saturday, Sunday, 2:00 PM – 3:30 PM PDT

From Jul 03, 2021 to Jul 10, 2021

Dr. Henny Kupferstein (Host)

https://on.zoom.us/ev/AEk9TFGWBHgKtmrnsXRdVf0LVY2IgdF-9Kr8BYeoW6G4nMUNxgEzUVojtfoowiteUK8UFQM

 

#SDP #SelfDetermination #budget

 

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? 

Also, did you know that The Tarjan Center at UCLA, a University Center for Excellence in Developmental Disabilities, is supposedly responsible for reporting about the transition to Self Determination, but their research funding does not cover interviewing consumers directly? 

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. 

Donate to our organization

Links for Navigation

  1. Dr Henny’s Self Determination Peer Support for Consumers in California

  2. San Diego SDRC Self Determination Orientation with Regional Center, California
  3. The Politics of Self Determination and Regional Centers in California
  4. July 1, 2021 Self Determination started today!!!!
  5. Return to Doogri.org/SD for Self Determination

Dr Henny’s Self Determination Peer Support for Consumers in California

San Diego SDRC Self Determination Orientation with Regional Center, California

The Politics of Self Determination and Regional Centers in California

The Politics of Self Determination and Regional Centers in California

What’s with all the politics and the holdups?

Bookmark this page to stay tuned with our research and advocacy.

Dr Henny’s Self Determination Peer Support for Consumers in California

 

State and Local Advocacy

  • 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
  • Upcoming: Jun. 15, 2021 5:00-6:30 p.m.
    Register in advance for this meeting

Donate to our organization

Links for Navigation

  1. Dr Henny’s Self Determination Peer Support for Consumers in California

  2. San Diego SDRC Self Determination Orientation with Regional Center, California
  3. The Politics of Self Determination and Regional Centers in California
  4. July 1, 2021 Self Determination started today!!!!
  5. Return to Doogri.org/SD for Self Determination

Dr Henny’s Self Determination Peer Support for Consumers in California

San Diego SDRC Self Determination Orientation with Regional Center, California

The Politics of Self Determination and Regional Centers in California

TED THE UNABOMBER’S UNIVERSE

A comprehensive open-access Kaczynski archives, free initiative by the Doogri Institute

Add a title to our open access library database, google sheets click to request access with your Gmail.

Request access to Ted the Unabomber’s Universe – a comprehensive open-access Kaczynski archives

Contribute to this initiative
  • Join our Zoom calls
  • Find Ted’s Universe on Clubhouse
  • Populate the Google Sheet
  • Add info to

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.

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