CoP ASD/DD Virtual Gathering
October 13, 2021 Recordings now available
Hope: High Expectations Across the Lifespan

Keynote Recording More

 October 13th is the CoP ASD/DD Virtual Gathering
Hope: High Expectations Across the Lifespan

This day is a partnership with CESA #1, Milwaukee Urban Autism Summit and Autism Society of Southeastern Wisconsin

Thank you to our wonderful presenters and all who attended.

Keynote from the CoP ASD/DD on 10/13/21.

Panel of Experts from the CoP ASD/DD on 10/13/21.

Resource Sheet from the CoP ASD/DD on 10/13/21.

We welcome Lola Dada-Olley speaking on Hope: High Expectations Across the Lifespan

Lola Dada-Olley is an attorney, disability inclusion advocate, mom, wife, and podcast host. Lola is the older sister to an autistic man and the mom to both a son and a daughter on the autism spectrum. She chronicled her family’s multi-generational autism journey with the launch of the “Not Your Mama’s Autism” podcast in 2020. Part audio memoir/part interview-style podcast, Lola touches on topics such as societal stigma, culture, the intersection of race and disability, healthcare, community policing, and corporate disability inclusion efforts. She is also on the board of directors of two nonprofit organizations centered on increasing access to healthcare, community support, and/or vocational opportunities for people with disabilities. In June 2021, Lola started writing a monthly column for PsychCentral.com, a division of Healthline Media, titled “The Caregiver Chronicles”, that takes a deeper dive into her personal account of lifetime caregiving. Lola also gave the TEDx talk in 2021, titled “Your Path is Your Purpose,” where she explains how a series of seemingly disjointed life events led her to where she is today.

We also welcome a dynamic family panel of Rechelle Chaffee, Daysi Jimenez and Ida Winters discussing their experiences with Hope and High Expectations

Rechelle Chaffee
Daysi Jimenez
Ida Winters

You can view past CoP ASD/DD recordings, Conversations on Showing Up for Kids!, Transition Talks Tuesdays, 5 County Transition Talks and more videos at https://www.youtube.com/channel/UCQ5zpWuJxlbjZLw595ST9ig

School Information, Guidance and Resources for COVID-19–now on our School/Special Education Page

Resources for children with special health needs and the families who care for them

Don’t worry about calming the storm. Calm yourself; the storm will pass. -source unknown

WI Department of Health Services Clinical Guidance for vaccinating 5-11 year olds (11.5.21)

Safe, Strong & Healthy Schools with Wisconsin doctors, educators, scientists, and leaders exploring the ways that schools and districts can build and maintain “Safe, Strong & Healthy Schools”

ReSET (Restarting Safe Education & Testing) for Children with Medical Complexity from Healthy Kids Collaborative Dane County

COVID-19 Infection Control and Mitigation Measures for Wisconsin Schools 2021/2022 (8/5/21)

Guidelines for the Prevention, Investigation, and Control of COVID-19 Outbreaks in K-12 Schools in Wisconsin (8/5/21)

Waisman Center Resources and Updates for COVID-19

WI DHS Higher Risk/Families with CYSHCN Resources for COVID-19

Spotlight Friday, December 3

Hope for the Holidays 2021 — Ideas to Help Us Celebrate and not Stress (in partnership with ASC)
December 7, 14 and 21 at 12:00-12:45 — Registration (for one, two or all three)

  • Dec 7 — Moving, Sensing and Feeling
  • Dec. 14 — Preparing for and Navigating Transition and Changes in Routine
  • Dec. 21 — This is Supposed to be Fun! Navigating the Winter Holidays, Autism and your Extended Family

Registration is now open (when necessary)!

  • Medicaid Made Easy Dec 15, 5:00-6:00pm (virtual) No Registration Needed! Join Zoom: http://us02web.zoom.us/j/88661880534?pwd=YThLS2JCdUk2SVN6VWFPczM0NWxCUT09  Meeting ID: 886 6188 0534 / Passcode: 622051 / Phone-In Option: 312-626-6799;  Medicaid Made Easy will give you a solid understanding of Medicaid programs for children, including those with disabilities. It’s focused on how these programs work to cover what your child needs. Presented by Family Voices of Wisconsin in partnership with SRC, Sennett Middle School and Juneau County Head Start.
  • Did You Know? Now You Know! Dec 15, 6:00-7:00pm (virtual) Registration Come learn about all the resources and services for children with disabilities and special health care needs from birth through young adulthood. Topics include private health insurance, Medicaid, long-term supports, how to coordinate services and so much more.

Upcoming webinars/trainings/conversations/gatherings

WSEMS: Friendly and Productive IEPs Dec 6, 12:00-1:00pm from WI FACETS

A Family-Centered Research Agenda for Improving Health Care Transitions for Children with Special Health Care Needs webinar Dec 7, 12:oopm from Lucille Packard Foundation for Children’s Health

This is WFT — who we are, what we do and the difference we make Dec 7, 12:00-1:00pm from WI Family Ties (WFT)

Disability Work Benefits: Navigating Work and Support Dec 7, 6:00-7:00pm Registration Part of Transition Talks Tuesday with the School District of Janesville (but you are invited!)

Research at the Waisman Center 101 Dec 8, 12:00-12:45pm Registration Part of Conversations on Showing Up for Kids!

Mindfulness for Students with Disabilities Dec 8, 12:00-1:00pm from WI FACETS

Useful Resources in the IEP Process (Spanish) Dec 9, 12:00-1:00pm from WI FACETS

Wraparound–principals and making the most of the team Dec 9 12:00pm-1:00pm & 6:00pm-7:00pm from WI Family Ties

Retirement Allocation — a 2nd Bucket Strategy Dec 9, 7:00pm-8:00pm from Joel Dettwiler and Quantum Group

Access to print and mental health — what’s the connection and what to do about it Dec 13, 12:00pm-1:00pm & 6:00pm-7:00pm from WI Family Tie

IEP 10: Parent Rights in the IEP Process Dec 14, 12:00-12:30pm from WI FACETS

Thinking About Supportive Decision-Making Dec 14, 6:00-7:00pm Registration Part of Transition Talks Tuesday with the School District of Janesville (but you are invited!)

When do Families Need to Start Thinking Transition? Part Two Dec 15, 12:00-12:45pm. Registration Part of Conversations on Showing Up for Kids!

Part C of IDEA: The Early Intervention Program for Infants & Toddlers with Disabilities in WI webinar Dec. 15, 12:00-1:00pm

Medicaid Made Easy Dec 15, 5:00-6:00pm (virtual) No Registration Needed! Join Zoom: http://us02web.zoom.us/j/88661880534?pwd=YThLS2JCdUk2SVN6VWFPczM0NWxCUT09  Meeting ID: 886 6188 0534 / Passcode: 622051 / Phone-In Option: 312-626-6799;  Medicaid Made Easy will give you a solid understanding of Medicaid programs for children, including those with disabilities. It’s focused on how these programs work to cover what your child needs. Presented by Family Voices of Wisconsin in partnership with SRC, Sennett Middle School and Juneau County Head Start.

Did You Know? Now You Know! Dec 15, 6:00-7:00pm (virtual) Registration Come learn about all the resources and services for children with disabilities and special health care needs from birth through young adulthood. Topics include private health insurance, Medicaid, long-term supports, how to coordinate services and so much more.

Holidays with Hunter Dec 22, 12:00-12:45pm Registration Part of Conversations on Showing Up for Kid!

Supporting Neurodiverse Students Professional Learning System (SNS) — The goal of the SNS is to support a skills based approach to challenging behaviors that will improve a student’s social understanding and self-management. More virtual and online trainings in 2022!

Week of November 29

Today (12/3/21) Governor Evers signed the Guardian Training bill (SB 92/AB 100) into law

2021 Community Report on Autism — CDC estimates that about 1 in 44 8-year-old children have been identified with ASD (or 23.0 per 1,000 8-year-olds) — from the Autism and Developmental Disabilities Monitoring (ADDM) Network

Transition Programming Beyond Age 18 from Transition Improvement Grant (TIG) and WI DPI includes:

  • Current state and federal special education guidance and regulations
  • IEP team conversation starts to set the stage for beyond 18 discussions
  • Review and reflection of IEP and PTP goals
  • Partnership resource mapping guidance, examples, and resources
  • Sample student schedules
  • Templates for teams to lay out goals, plans, and map transition partners
  • Additional resources to help teams build successful transition schedules

Family Voices United to End Racism Against CYSHCN and their Families (FamU) has launched a toolkit website designed to support the important work of dismantling racism in health care. The website offers concrete tools designed to support organizations and individuals to become more culturally competent and responsive by building meaningful, equitable engagement with Black children and youth with special health care needs (CYSHCN) and their families. It is designed to Build Competence, Foster Connectedness and Encourage Confidence to Act.  You can find:

  • Understanding Black Culture to learn about the first enslaved Africans who set foot on American soil in 1619 to present day;
  • Tools to Get You Started includes Cultural Awareness and Cultural Growth Tools, documents to assist with implementing this work, as well as resources for allies;
  • Youth Leadership provides an overview of youth activism through history, resources on how to become a Youth Leader, and how to engage youth in your programming; and,
  • Explore More Resources includes a Town Hall How-to-Guide and more.

Families Living With Disabilities from Brava Magazine

Wisconsin Respite Care Connections (December) from Respite Care Wisconsin

Hidden Costs, Real Expenses: Costs of Caregiving video from WI BPDD

Health Care Changes Too! Bridging the Gap part of Transition Talks Tuesdays School District of Janesville

Hunter and Tim Talk Transition part of Conversations on Showing Up for Kids!

December Wisconsin Family Engagement Newsletter from WI FACETS

  • Family Engagement Article: Family and School Partnerships for Students with IEPs
  • Research to Read: Listening to Parents’ Narratives: The Value of Authentic Experiences with Children with Disabilities and Their Families
  • Online resources for youth and families in the area of Communication
  • For Your Information: Rule Change for Identifying Emotional Behavioral Disability (EBD) Goes into Effect December 1, 2021
  • Information about upcoming statewide trainings, workshops and conferences
  • At Home Learning Strategies

Family ECHO: Autism — Join a community of families learning to better support their autistic children Dec 8, 3:00-4:15 Strategies to Promote Well-Being and Ensure Quality Care

Crime Against People With Disabilities On The Rise from Disability Scoop

Week of November 22

How to Take the Stress Out of the Holidays from Child Mind Institute

How to Teach Children Gratitude from verywellmind.org

Sonja Oetzel was recognized with the Pringle Award for her outstanding service at the Waisman Center

Improving Health Care Transitions for Children and Youth With Special Health Care Needs from Lucile Packard Foundation for Children’s Health

Healthcare Access and Utilization for Young Adults With Disability: U.S., 2014–2018 from Journal of Adolescent Health

Rising Above Depression | Stephanie’s Story from Rogers Behavioral Health

Two Jobs, No Breaks: Employed and Caregiving Video from WI Board for People with Developmental Disabilities

Adrienne Hibbert: Equity is the Answer; Let’s Talk About Bias in Healthcare, Parenting and Financial Access from Florida Family Leader Summit 2021

Chatter Matters! Communication Camp is an overnight camp for children who use augmentative or alternative communication (AAC) and up to five of their immediate family members. June 16-19, 2022 at the University of Wisconsin-Whitewater. Applications are now available. Applications will be accepted until January 24th. Scholarship opportunities.

Research Studies:

Previous highlights

The WI Children’s Mental & Behavioral Health Navigator is a free, confidential, online tool designed to help parents, caregivers and professionals in Wisconsin navigate (find, access, pay for) mental and behavioral health services and support for children, adolescents and young adults under the age of 21. Just answer a few questions about the child, and the Navigator provides a customized guide to connect kids and families with the resources and support they need and deserve. Developed by Well Badger Resource Center.

Revised Katie Beckett Fact Sheet from Family Voices of Wisconsin

Katie Beckett Medicaid Helps Children with Disabilities Access Needed Services

Katie Beckett Medicaid provides access to Wisconsin Medicaid services for children with disabilities, mental illness, or complex medical needs. Katie Beckett helps some children whose parents have too high of an income for Medicaid, and those covered by private insurance, get a ForwardHealth Medicaid card so they can receive needed services and equipment that might not otherwise be covered.

To apply, families can call 888-786-3246. They will be connected with an eligibility specialist who will explain the Medicaid benefit and help the family decide if they want to pursue enrollment.

Learn more on the Wisconsin Department of Health Services website.

Disability Information and Access Line Help with COVID-19 vaccinations for people with disabilities from Administration for Community Living

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The Southern Regional Center for Children and Youth with Special Health Care Needs tries to help families, and the professionals who support them, through providing current resources, news articles, interesting items and more. We post “What’s New” on our home page each week. We regularly post this content and more on our Facebook page. We send out a weekly Resource Round-up on Fridays (send an email with Weekly Resource Round-up in the Subject Line to cyshcn@waisman.wisc.edu to join).We bring together the “What’s New” resources by topic and place them on the Resources page. We hope you can find some help, encouragement, or just information on this page. New content is added regularly.

A Spanish language edition, “GUÍA DE RECURSOS,” is here!

Here is a place of connections and relationships. We truly believe we are better together. We hope this web site will serve as a portal to introduce you to a number of exciting opportunities available in Wisconsin. Here you can connect to a large number of resources concerning autism spectrum disorder and other developmental disabilities. Here you will find training on screening, assessment, diagnosing, communicating results, starting a medical home and more, much more. Here you can join with over 150 other people representing over 50 organizations at a state-wide Community of Practice.

Together we can make a difference. We invite you to look through this portal and see what we are working on and we invite you to join us. If you have any questions or suggestions, please contact Tim Markle at markle@waisman.wisc.edu