PARCA - Partners & Advocates for Remarkable Children & Adults

08/08/2026

FROM SUE DIGRE:


Dear Super Family Sunday Families,

We hope you will join us for our next free event when the Junior Museum & Zoo is open exclusively to families with children who have disabilities.

Our next Super Family Sunday is on August 16, 2026 – 5:30 to 7:00 pm.

Children with all disabilities are welcome, as well as siblings and grandparents.

In order to maintain a non-crowded environment, spots are limited and reservations are required. We have migrated Super Family Sunday tickets to Acme. Please visit our Acme site to register. Reservations fill up quickly. If your plans change, please cancel your tickets or let us know. This way we can let another family participate.

Questions? Please reach out to Trudi Wallick-Horrocks.



The Palo Alto Junior Museum & Zoo
[email protected] | paloaltozoo.org | friendsjmz.org




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Palo Alto Junior Museum & Zoo | 1451 Middlefield Rd | Palo Alto, CA 94301 US
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The Palo Alto Junior Museum & Zoo is a place where children and their caregivers come to explore, discover, create, play, and get curious about science and nature. Through hands-on science exhibits, a diverse community of live animals, and immersive zoo experiences your child's natural scientist wil...

08/07/2026

FROM SUE DIGRE:

Hi all,

We are excited to invite you to our next IDD-TRANSFORM virtual forum, Caring for Patients With Intellectual and Developmental Disabilities in the ICU. The event will feature Colleen Vega and Felicia Hui.

Dr. Colleen Vega serves as the Inpatient Lead Advanced Practice Provider (APP) for Palliative Care and Hospice at Stanford Health Care. With more than 27 years of healthcare experience, her career encompasses clinical practice in emergency and palliative care, leadership, quality improvement and nursing professional development.

Felicia Hui is a palliative care physician at Stanford Medicine and helps patients both within the hospital and in the clinic. She is an expert in educating healthcare providers in symptom management and communication skills.

Date: August 20th, 2026 | 12:00PM PT/3:00PM ET

Link to register: https://bit.ly/IDDCareinICU

CME credit is available. Families, healthcare providers, and service projects are encouraged to attend.

A flyer is attached with more information. Feel free to share this information with anyone you think would be interested. Thanks, and hope to see you there!

Best,
Justin Steinberg

Join IDD-TRANSFORM for our virtual forum about caring for patients with IDD in the ICU featuring Colleen Vega and Felicia Hui

08/07/2026

FROM SUE DIGRE:

I've noticed something interesting.

When parents tell me their child with ADHD "can't do anything independently," I always ask the same question:

"What happens when you're in the room with them - not helping, just there?"

Almost always, they say: "Oh, they can do it when I'm there. But the second I leave, it all falls apart."

That's not a coincidence.

And it's not something you need to fix.

Because here’s the truth…

Your presence is doing something their ADHD brain can't do on its own.

When you're in the room, you're the thing that keeps their scattered attention anchored to the task.

The moment you leave, that anchor disappears.

And their brain, which can't create that structure internally, drifts to anything more interesting than cleaning their room.

So instead of pushing them to work alone (which keeps failing)...

Here's what you can actually do:

Tonight, choose one task your child struggles to complete independently - homework, cleaning their room, or getting ready for bed.

Just one.

Don't try to fix everything at once.

Then, tell them: "I'm going to sit in here and fold laundry while you work. I'm not here to help - just to keep you company."

(You can substitute folding laundry with answering emails, reading your book, or doing any quiet activity.)

This is important because you're being clear from the start - you're not supervising.

Then sit nearby and do your own thing.

Don't watch what they're doing.

Don't comment on their progress.

Don't check if they're doing it right.

Your job is to exist in the same space - that's it.

That's the technique.

Try it tonight and watch what happens.

You'll probably notice they stay focused longer than when you leave the room.

They might still get distracted - that's normal with ADHD - but they'll catch themselves faster and get back on track.

This technique is called body doubling, and here's why it works:

ADHD brains need external structure to maintain focus on boring tasks.

When someone else is nearby - even doing something completely different - it creates just enough anchor to keep their attention from drifting.

You're not doing the work for them. You're being the structure their brain can't create internally.

Inside Independent Task Champ, you'll find the complete body doubling protocol - including how to fade your presence over time until they can work independently - alongside:
• The full 3S Task Completion Formula that shows you how to make any task completable for your ADHD child

• 137 age-appropriate tasks guidebook, so you finally know what your child is actually capable of at their age

• 100+ motivation triggers organized by type - ready to use the moment their brain refuses to engage with a boring task

• Ready-made visual templates for morning routines, homework, chores, and bedtime that you can download and start using today

Everything you need to help your child complete tasks without you supervising every single step.

I'm only keeping the launch price of $19 available until tonight at midnight.

After that, it goes back to $49.

If you're ready to stop being their constant supervisor and help them build real independence…

You can get your version of the Independent Task Champ here.

08/06/2026

FROM SUE DIGRE:

Get involved with NDSS! Check out our free webinars, events, and back-to-school resources.

Back to School Resource Round Up!

NDSS has a number of FREE resources that cover all ages and stages of education. Our printable resources include the Learner Profile, inclusion checklists, best practices, self-advocate tips, and more!


Research Voices

Research Voices is looking for volunteers! Join and support families by:

• Sharing your personal experience about research.
• Attending local and regional conferences and events.
• Encouraging others to consider participating in research opportunities.

Learn more about Research Voices. If you are interested in becoming a trusted voice in the community, our next training is on Tuesday, September 1 from 4:30-6:30 pm ET. Please register for the FREE training.


Vaccines and Down Syndrome: What the Research Shows

On Thursday, August 27 at 1:00 – 2:00 pm ET, Bernard Khor, MD, PhD, will provide an overview of how and why people with Down syndrome are more likely to get serious infections, including differences in their immune systems. He will also share current research on the safety and efficacy of vaccines for people with Down syndrome, helping to answer common questions and address concerns about vaccination.
Register

NDSS NYC Buddy Walk®

Did you know that the NDSS Buddy Walk® is the world’s most widely recognized public awareness program for the Down syndrome community? Join us at the 2026 NYC Buddy Walk on Saturday, September 12, 2026!
Register


Ability Transcends Challenges (ATC) Award
NDSS partnered with the Professional Baseball Athletic Trainers Society (PBATS) to celebrate businesses making a meaningful impact on disability employment in their local communities.

This year, PBATS presented the 2026 Ability Transcends Challenges (ATC) Award to 30 businesses that have demonstrated a strong commitment to disability employment by hiring individuals with disabilities or providing essential education, training, mentorship, and career exposure opportunities.

Read more about the ATC Award recipients.


Federal Advocacy and Policy Updates

Watch this FREE webinar recording for an update on the latest federal policy developments affecting the Down syndrome community. Learn about the recent Olmstead memo on disability rights, changes at the Department of Education, updates on Medicaid, and the status of the legislative priorities highlighted during this year's NDSS Down Syndrome Advocacy Conference.
Watch the Recording


2027 Sanlam Cape Town Marathon

History has been made! The Sanlam Cape Town Marathon has officially become the eighth Abbott World Marathon Major and the first Major ever to be held in Africa. NDSS has been proudly selected as an official charity partner for the very first time.

Apply today to be part of this unforgettable event! With limited charity spots available, don't miss your chance to secure your place!
Apply


Alzheimer’s Association International Conference

The Alzheimer’s Association International Conference (AAIC) is the largest annual convention of researchers, pharmaceuticals, academics, and patient advocacy groups in the world and NDSS had the honor of being the only Down syndrome organization to exhibit at the conference earlier this month! We were honored to be joined by colleagues and self-advocates from Down's Syndrome Association of the UK and were delighted to see that attention on Down syndrome-associated Alzheimer’s disease (DS-AD) has increased dramatically in recent years, evidenced by multiple “featured research” panel presentations, several “developing topics” sessions, and more than 80 research posters.


2027 HOKA Semi de Paris and the Schneider Electric Marathon de Paris

Join Team NDSS and race through the City of Love in either the Half Marathon or Full Marathon. NDSS is proud to be a charity partner of the HOKA Semi de Paris, taking place on Sunday, March 7, 2027, and of the Schneider Electric Marathon de Paris, taking place on Sunday, April 11, 2027. Apply today!
Apply


Down Syndrome Research

During the NDSC annual convention in July, NDSS hosted a popular panel presentation to talk about the importance of Down syndrome research. The panelists shared their unique perspectives on why research is so important, what the outcomes of research can do, and how families can get more involved. A key highlight of the session was the speech by self-advocate Allison Tarzwell, who shared her personal experience with clinical research.


Your gifts support our mission to create a world where individuals with Down syndrome thrive.
Give Today

08/06/2026

FROM SUE DIGRE:

The Arc’s National Convention brings together people from across the country to share ideas, learn practical strategies, and connect around the issues shaping the disability community today.

Early bird registration is open for our largest gathering of the year!

Join people with disabilities, families, advocates, and professionals this November in Portland, Oregon, for three days of learning, connection, and conversations that move the disability community forward.

Explore sessions on Medicaid, education, advocacy, housing, criminal justice, AI and tech, and more. Hear from national voices, learn from lived experience, and leave with ideas you can bring to your work, community, and daily life.
Save Your Spot

Our opening general session will feature Dani Bowman, an autistic entrepreneur, animator, educator, and speaker who uses her work and public profile to challenge harmful ideas about disability, advocate for inclusion, and show what self-advocacy can make possible. She's the founder of DaniMation and was featured in Seasons 1–4 of Netflix’s “Love on the Spectrum U.S.”

Her session will focus on what self-advocacy looks like when the world still underestimates disabled people, misrepresents them, or treats disrespect like entertainment. Don’t miss your chance to see Dani live and learn:
• What it’s like to build a career on her own terms
• How she uses her public platform
• Why harmful language, like the R-word, still matters
• How we can all push back when disability is mocked, minimized, or dismissed
It’s the kind of session that sets the tone for everything that follows.

Early bird pricing is available through September 30. Lock in the lower rate now.

We hope to see you in Portland!

08/04/2026

FROM SUE DIGRE:

Public Meeting Notice:
Office of Administrative Hearings Advisory Committee (OAHAC) for Lanterman Act Programs
Thursday, August 13, 2026
1:00 p.m. - 4:00 p.m.

The upcoming meeting is to provide recommendations to the Office of Administrative Hearings (OAH) regarding mediation and hearing operations as part of the Lanterman Act service and eligibility appeal process. This meeting is open to the public.

You are invited to share your comments and valuable input, either verbally or in writing by email at: [email protected], during the public comment period of the scheduled meeting.
You may join the meeting virtually using the posted webinar link below, or in-person at OAH’s Los Angeles location:

Office of Administrative Hearings
320 West 4th Street
6th Floor, Suite 630, Courtroom 1A
Los Angeles, CA 90013

CLICK HERE: MEETING ZOOM LINK

Access the OAH website for the meeting agenda, materials, and attendance information.



Aviso de Reunión Pública:
Comité Asesor de la Oficina de Audiencias Administrativas (OAHAC, por sus siglas en inglés) para los programas de la Ley Lanterman
Jueves 13 de agosto de 2026
1:00 p.m. - 4:00 p.m.

La próxima reunión es para proporcionar recomendaciones a la Oficina de Audiencias Administrativas (OAH, por sus siglas en inglés) en relación con las operaciones de mediación y audiencia como parte del proceso de apelación de servicios y elegibilidad de la Ley Lanterman. Esta reunión está abierta al público.

Le invitamos a compartir sus comentarios y sugerencias, ya sea verbalmente o por escrito enviando un correo electrónico a: [email protected], durante el período de comentarios públicos de la reunión programada.

Puede participar de la reunión de forma virtual utilizando el enlace del seminario web publicado abajo, o en persona en la sede del OAH en Los Angeles.

Oficina de Audiencias Administrativas
320 West 4th Street
6th Floor, Suite 630, Courtroom 1A
Los Angeles, CA 90013
https://oah-dgs-ca-gov.zoomgov.com/j/1609549599

Haga clic aquí: Para el enlace de Zoom de la reunión

Acceda al sitio de web del OAH para obtener la agenda de la reunión, los materiales y la información para asistir.



California Department of Developmental Services

https://www.dds.ca.gov/office-of-administrative-hearings-advisory-committee-oahac

08/04/2026

FROM SUE DIGRE:

Medicaid 101: Basics and Recent Changes

When: Tuesday, August 11, 2026, from 11:00 a.m. - 12:15 p.m. PT/2:00 p.m. - 3:15 p.m. ET

Understanding Medicaid is key to understanding the health and long-term care delivery system for older adults. Every year, over 7 million older adults rely on Medicaid to pay for necessary health services. Over two-thirds of all older adults who receive long-term care in their homes or in a nursing facility participate in the Medicaid program.
This webinar, Medicaid 101: Basics and Recent Changes, will include a basic primer on the Medicaid program and will be most suited to aging or disability advocates, legal aid advocates, and anyone new to Medicaid.
During this webinar, presenters will cover:
• How Medicaid is funded
• Medicaid eligibility
• Key Medicaid protections
• Medicaid’s role in paying for health and long-term care for older adults
• How Medicaid and Medicare work together
• Brief overview on Medicaid cuts in H.R.1 and the impact on older adults
Presenters:
• Tiffany Huyenh-Cho, Director, California Medicare and Medicaid Advocacy, Justice in Aging
• Gelila Selassie, Director, Health Advocacy, Justice in Aging
This webinar will take place on Tuesday, August 11, 2026 at 11:00 a.m. PT/2:00 p.m. ET and will run for 75 minutes.

Register Now

We use the Zoom webinar platform for our trainings. See below for more information:
• Capacity for this session is limited to 3,000 participants. Please be sure to log onto the webinar a few minutes early in order to secure your place for the live presentation on Zoom.
• If you would like to request ASL interpretation or have other accessibility related questions, please email [email protected] at least one week in advance.
• All participants will have the option of accessing audio through the computer or by phone. Closed captioning will be available.
• The presentation will be recorded and available for later viewing. The recording and training materials will also be emailed to all registrants within a few days after the training.
• This Zoom webinar is structured so that all participants are muted and off camera. We are unable to receive any communication from participants via the chat or answer raised hands. Questions are taken through the Q&A function. If you are unable to use the Q&A function, our inbox, [email protected], is monitored throughout the webinar and you can email us with any questions or technical difficulties.
• Zoom Registration Update: For security reasons, when you register for a webinar, the join link will no longer be displayed on the confirmation page of your web browser. Instead, you will find the join link in the email confirmation, which will be sent to you as usual. If you don’t receive an email from Zoom, check your junk folder, and add Zoom to your list of approved senders.
• We are unable to offer CEU’s or other certifications. Thank you for understanding.

07/30/2026

FROM SUE DIGRE:

https://www.tandfonline.com/doi/mlt/10.1080/19349491.2026.2682771?src=pdf

07/30/2026

FROM SUE DIGRE:

https://thearcca.org/the-arc-of-california-responds-to-latest-federal-medicaid-funding-deferral/

07/30/2026

FROM SUE DIGRE:

https://www.abilities.com/marketplace?utm_source=newsletter&utm_medium=email&utm_campaign=mrktplc-jul26