STAR Newsletter

Summer 2023

In this month’s newsletter, we will reflect on some highlights of the Blue Ridge LEND over the past year, and its impact on the UVA community and beyond.

Highlights of Blue Ridge LEND

The Blue Ridge LEND is part of a national network of 60 federally-funded Leadership Education in Neurodevelopmental and Related Disabilities (LEND) programs, and it focuses on the rural Blue Ridge and Appalachian region of Virginia.


The second year of the Blue Ridge LEND program came to a close in April, and here are some of this year's highlights.

Advocacy through LEND

Advocacy


In February, the Blue Ridge LEND Fellows had the memorable surprise of watching disability advocacy happen in real time.


Brian Kelmar (LRIDD) was in the middle of his Zoom presentation on disability advocacy when he let the fellows know that he needed to hop off the call for a hearing.



Minutes later, the fellows watched Brian in a live feed of the House Justice Committee as he testified for a bill he advocated for, SB 1272. This bill would remove any mandatory minimum punishment for simple assault and battery for those diagnosed with an intellectual or developmental disability if "the court finds that the violation was caused by or had a direct and substantial relationship to the person's disorder or disability."


"It was great getting to actually watch the live process of bills being voted on; it was so much cooler than it just being explained!"

The votes in the committee were cast. Nays were 5; yeas were 3.


The bill did not progress any further.


Brian rejoined the Blue Ridge LEND fellows on Zoom to continue his talk on disability advocacy and spoke candidly about what we saw unfold. The failure of this bill only highlighted the long-term patience and persistence needed to advocate for disability legislation.

In January, some Blue Ridge LEND fellows and faculty attended the Autism Advocacy Day in the Virginia General Assembly.

LEND Leadership Presentation Day

In April, LEND Fellows presented their year-long projects at our graduation ceremony.


Topics included supervision for neonates with Down Syndrome, piloting a new communication tool for care in the PICU for children with disabilities, and a plan for a new ASD professional development program for Virginia preschool teachers.

View Presentations

Poetry From A Voices of Autism Contributor

Change



Change

The word translates to stress

It runs marathons and miles along my head

They say breathe in

And breathe out

But the change is in my head like a roundabout

No way to escape

No words of goodbye

It sits and stares

As change floats by

People move on

Calendars flip to the next month

But I sit still

Missing the time when normality was enough

They prepare me for the soon to come

Yet when normality drives by I’m still not aware

What I was missing all the time

Even for the better

It feels for the worse

Because I don’t feel like

I can break down these words

“Things change”

“People move on”

Yet I stay where I am

Normality the only thing that belongs

In my mind

In my soul

I watch as the world around me improves

But I prefer before as a whole

I love to see your smiles

And the way you all care

But I only feel safety

When the dust of something new

Leaves the open empty air

Through the lens of an autistic 15-year-old girl who wished to remain anonymous.

RESEARCH & TRAINING
Get Connected with STAR

Upcoming Event

Members of the autism community and their families are invited to join us on Zoom for one of two events this summer. Learn more about our project with emergency responders - and what you can do! Click Register to mark your place. You'll hear about:


  • how to support people with autism during a crisis
  • recommendations on how to prepare for a 911 call
  • our recent work in developing autism training for first responders
Register

Wednesday, August 30th

12-1 PM

Register

Monday, September 18

7-8 PM

Upcoming Research

Stay tuned for upcoming research study opportunities on:



  • Autistic adult experiences of gender diverse people, people assigned female at birth, and people of color aged 18-30.


  • Comparing online mental health interventions in autistic adults (18+) to help determine which is more effective for the autism community.



Sign up for Autism DRIVE to stay up-to-date on STAR research opportunities!

Autism DRIVE

Local events, services, information and research opportunities

Sheila C. Johnson Center

Telehealth, individual therapy, and parent autism training program

STAR Family Navigation

Autism resources, referrals, and support for families in Virginia


About STAR
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The mission of the UVA Supporting Transformative Autism Research (STAR) initiative is to improve the lives of individuals with autism and their families through research, education, and outreach. STAR brings together researchers, community partners, individuals with autism, and their families to leverage strengths and address challenges. Our ultimate goal is to empower individuals with autism, their families, and their communities to achieve positive outcomes and quality of life.

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