CYSHCN

What’s New

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School Reopening Information, Guidance and Resources–now on our School/Special Education Page

COVID-19 (AND MORE) 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

Waisman Center Resources and Updates

WI DHS Higher Risk/Families with CYSHCN Resources

Posted the Week of September 15, 2020

TRAININGS co-sponsored by SRC:

1) What’s After High School? A Transition Training for Families, Youths and Providers. Tuesday, September 29, 3:00-4:30pm. Presented by Family Voices of Wisconsin, cosponsored by the Transition Improvement Grant. If you have a youth or work with a youth with special needs/disabilities who is 14-21, this training is for you! (Youth are welcome to attend as well). Register at go.wisc.edu/jdc58k​. You will need to watch a 30 minute video at familyvoiceswi.org/learn/whats-after-high-school/ BEFORE the training. (Flyer has more details).

2) Support Parent Training. Saturday, October 3, 10:00am-12:00pm. Presented by Parent to Parent of Wisconsin. Join our statewide network of families who support each other on the journey of parenting children with special health care needs by attending the training and becoming a support parent. Registration is limited! Register at https://www.surveymonkey.com/r/SP10320. (Flyer has more details).

3) Medicaid Made Easy. Tuesday, October 6, 3:00pm-4:30pm. Presented by Family Voices of Wisconsin. Details coming soon. Would you like to cosponsor and help promote? Let Tim know at tmarkle@wisc.edu.

4) Did You Know? Now You Know! Tuesday, October 20, 3:00-4:30pm. Presented by Family Voices of Wisconsin, cosponsored by Gio’s Garden. Details coming soon. Would you like to cosponsor and help promote? Let Tim know at tmarkle@wisc.edu.

Conversations on Showing Up for Kids!

1) Conversations on Showing up for Kids! Thursday, 9/17 Liz Hecht from Family Voices of Wisconsin and the Survival Coalition of Wisconsin Disability Organizations joined us to discuss what they learned from their “Impact of School Closures on Families and Students with Disabilities” Focus Groups. Recording available on YouTube.

2) Conversations on Showing Up for Kids! Thursday, 9/24, 12-12:45. We will be talking about how the Wisconsin Statewide Parent Educator Initiative (WSPEI) helps support families of student with special needs. We will be joined by Caroline Rossing, WSPEI Statewide Grant Coordinator. Register at https://go.wisc.edu/786y37 (Flyer has more details.)

LA FAMILIA, EL INTERNET, Y NUESTROS JÓVENES EN TIEMPOS DE PANDEMIA:  A Spanish Speaking Zoom Workshop Martes 29 de SEPTIEMBRE 6:00-7:30pm from Formando Lazos Familiares download the flyer for connection information.

Experiencing Grief during COVID-19 from Child Neurology Foundation

For Kids with Special Needs, Online Schooling Divides the Have and Have-Nots from Kaiser Health News

Education Forward: Reopening Wisconsin Schools from Wisconsin Department of Public Instruction

Ready4K is an evidence-based family engagement curriculum delivered via text messages. Each week, you’ll receive short text messages with fun facts and easy tips on how to promote your child’s development by building on existing family routines. Sign up today at Ready4K! from the WI Department of Children and Families

COVID-19 Special Education Information (PowerPoint slides) from Wisconsin Department of Public Instruction

Arts Education School Operating Considerations from Wisconsin Department of Public Instruction

Upcoming Webinars/On-line Conferences

•  Conversations on Showing Up for Kids! Thursday, 9/24, 12-12:45. We will be talking about how the Wisconsin Statewide Parent Educator Initiative (WSPEI) helps support families of student with special needs. We will be joined by Caroline Rossing, WSPEI Statewide Grant Coordinator. Register at https://go.wisc.edu/786y37 (Flyer has more details.)
• LA FAMILIA, EL INTERNET, Y NUESTROS JÓVENES EN TIEMPOS DE PANDEMIA:  A Spanish Speaking Zoom Workshop Martes 29 de SEPTIEMBRE 6:00-7:30pm from Formando Lazos Familiares download the flyer for connection information.
• Virtual Fall Fetal Alcohol Spectrum Disorder Forum October 30 from Orchids (registration available in September).

Participate in Research/Surveys

• ASSIST–Parents of youth with an autism spectrum disorder age 16-26 are invited to participate in a new research program looking to improve parents’ ability to advocate. Contact the Waisman Center at transition@waisman.wisc.edu 0r (608) 265-3165. More info on the flyer- ASSIST

Posted the Week of August 31, 2020

Considerations for Young Children and Those With Special Needs as COVID-19 Continues from JAMA Pediatrics

Back to School: How can schools safely social distance; particularly for students with special services and full-time aides? from Child Neurology Foundation

Ensuring Children’s Access to Care Using Telehealth in Medicaid During COVID-19 from Manatt on Health: Medicaid Edition

NEW Videos on Wearing a Cloth Face Mask, Washing your Hands and Staying Home When you are Sick in SPANISH and ENGLISH from the National Association of School Nurses

What can families do if they disagree with their IEP Team? What are the options? Tim Markle, Director of the Southern Regional Center for CYSHCN talked with guests from Gia Pionek from the Wisconsin Special Education Mediation System and Matthew Zellmer from WI FACETS about what parents and schools can do when they disagree. Recording is AVAILABLE.

We all need a Self-Care Calendar! Check this out from Action for Happiness

Shout out to Highland Community Schools in Iowa County from NBC15

Amendment to Order #9 Released-Tuesday, September 1, 2020
The amendment allows for in-person instruction to students with a disability and/or individualized education program.

Free Transition Training for Families of Youth with IEP’s: Transition Parents in Partnership trainings will take place virtually via Zoom beginning this fall. Now is a great time to take advantage of top-notch training without the stress of traveling or being away from home! Transition Parents in Partnership (TPIP) will prepare families for the transition process for their youth with disabilities ages 14-21 in the areas of employment, education, living and health. See click HERE to view the flyer for training options and registration.

What can we do to help“back-to-school” anxiety? a Conversation on Showing Up for Kids! Tim Markle, Director of the Southern Regional Center for CYSHCN talked with Connie Persike, Speech Language Pathologist and Behavioral Consultant from CP Consulting and Tim Peerenboom, School Psychology Consultant for WI DPI. They discussed ideas on helping our kids (and ourselves) deal with the anxiety of returning to school. Recording  NOW AVAILABLE

Returning to School During and After Crisis Practice Guides from Center on Positive Behavioral Interventions and Supports (PBIS)

August 2020 OSEP Update Responding to COVID-19: Back to School, Policy Letters from Office of Special Education Programs (OSEP) (8.27.20)

REVISED August 2020: A Transition Guide to Postsecondary Education and Employment for Students and Youth with Disabilities from the Office of Special Education and Rehabilitative Services (OSERS)

Parents: Supporting Learning During the COVID-19 Pandemic Online Modules from Vanderbilt University

Posted the Week of August 24, 2020

Anxiety in Schools Podcast Series from Rogers Behavioral Health

Supporting students with school anxiety during COVID-19 Blog Post by Rogers Behavioral Health

Rethinking Unemployment and Sex Education Autism Knows No Boundaries podcast with Michael John Carley

For Black Kids, Autism Caught Late in the Game from US News and World Report (via Michael John Carley)

Questions and Answers on Helping Kids Return to School. A recorded Facebook Live Event from Rogers Behavioral Health.

September Family Engagement Newsletter from WI FACETS featuring information on Assistive Technology and Virtual Learning along with ABLE accounts and trusts

Coronavirus Video Series has short 2-7 minute video on how public health benefits are impacted by COVID-19 from HealthWatch Wisconsin

COVID-19 Help (including a Resource Guide for Families) from Wisconsin Well Badger Resource Center

Strategies for Protecting K-12 School Staff from COVID-19 (updated 8.20.20) From the CDC 

Back to School Planning: Checklists to Guide Parents, Guardians, and Caregivers Includes: Preparing for At-Home Learning and and Preparing for In-Person Classes from the CDC

• Wisconsin Department of Children and Family Services (DCF) and WI DPI Guidance for Child Care
  COVID-19 Letter to District Administrators
  New DHS Guidance, DCF Resources, and Digital Equity (8/19/20)  Includes:  DHS Guidance on COVID-19 Outbreaks in School, DCF  guidance documents to help child care providers and local educational agencies as families, schools, and child care providers navigate the reopening of school this fall, (this information can also be found on the DCF website: https://dcf.wisconsin.gov/covid-19/childcare/families) and Support for digital equity
  4K Outreach-COVID-19: Guidance and Considerations (8/17/20) Includes: This document provides information for school districts offering 4K Outreach during 2020-2021 school year. It provides guiding questions and  examples of outreach efforts that are acceptable during this time of COVID-19. These are offered to support districts in developing outreach activities that best meet the unique needs of their individual districts and communities.
  EARLY LEARNING INFORMATION-COVID-19 (8/24/20) Includes: Link to the running updates for Early Learning information for DPI. The above information is included in this document.

Posted the Week of August 17, 2020

Parents reflect on back to school plans, health experts offer tips from NBC15

Parents and Professionals in Wisconsin talk about Virtual Schooling and Home Schooling (recording) with the Autism Society of South Central Wisconsin

AUGUST 2020:THE  ANNUAL HEALTHCARE ISSUE from Exceptional Parenting

What The Coronavirus Means For IEPs This Year from DisabilityScoop

Special education students are not just falling behind in the pandemic — they’re losing key skills, parents say. From the Washington Post

Richard Engel: Kids with special needs are not OK right now. Neither are parents. From Today

Supports for Students with Neurodiverse, and Social and Emotional Needs During Covid-19 Resource list (8/20/20) from WI DPI

DiSH Special Session on COVID-19 and Schools  recording along with a Q and A document (8/20/20)

How to Thrive — Not Just Survive — in the Age of the Coronavirus: Focus On 5 Core Principles from Thrive Global

Q&A: Mental health expert talks emotional well-being, building resiliency for the 2020-21 school year from Community Impact Newsletter

As schools reopen, addressing COVID-19-related trauma and mental health issues will take more than mental health services from Child Trends

Guidelines for the Prevention, Investigation, and Control of COVID-19 Outbreaks in K-12 Schools in Wisconsin (8/19/20) from WI Department of Health Services

COVID-19 Decision Tool for Individuals and Families (8/19/20) from WI Department of Health Services

Education Forward: Operating Schools During a Pandemic (8/19/20) from Wisconsin Department of Public Instruction

Down Syndrome Clinic to You (DSC2U) brings the best of health and wellness information about Down syndrome to caregivers and primary care physicians around the globe

South Madison Community COVID Testing Site at the Park Street Public Health WIC clinic is open Mondays, Wednesdays and Fridays. You need to make an appointment.

Equity and Diversity

• Equity Resources from Wisconsin Alliance for Infant Mental Health
• Teach, Learn, & Connect (TLC) for Kids Resource library includes popular, on-demand training and shareable fact sheets to help low income individuals and families – especially those with children and youth with special healthcare needs in the home – secure telecommunications services. From ABC for Health.
• For Mothers of Black Children with Disabilities, Living with Twice the Fear from Forbes
• Talking with Young Kids about Racism, Police Brutality, and Protests FVJuneeBlast2020 from Family Voices (.pdf)
• COVID-19 Diversity, Equity and Inclusion Resources

Summer 2020 Resources

• Virtual Summer Camps from Summer Camp Hub
• To Parents, From a Family in ‘COVID-19 Mode’ for 10 Years from The Mighty
• 2020 Juventuras Clubes Virtuales/Juventuras Virtual Clubs from Centro Hispano of Dane County
• Family Engagement Newsletter from WI FACETS–focus on Speech and Language Development and some cool resources for summer!
• Resource List to Stay Saner at Home this Summer from Family Voices of Wisconsin
• 100 Things to do this summer from the Milwaukee Journal Sentinel (you may need to answer some questions to access the full article)
• 6 fun ideas for summer fun now that camp has been cancelled from CNN
• Wisconsin Virtual Field Trips from National Resources Foundation of Wisconsin
• Reimagining Summer: Planning for the New Normal  Summer 2020 Family Voices Newsletter
• Madison Summer Options
  • Summer Inside Out from Madison School and Community Recreation (MSCR)
  • Printable Maker Resources from Madison Public Libraries
  • We Read Summer Program from Madison Public Libraries
  • Madison Children’s Museum at home

Resources for Families to Support Learning from Home During COVID-19 on our School Page

COVID-19

• Sauk Co. Health Dept. warns about COVID-19 exposure at Reedsburg district-wide registration event from NBC15
• At-home Learning Resources for the COVID-19 Outbreak from FamilyEducation
• School’s Out: A Parents’ Guide for Meeting the Challenge During the COVID-19 Pandemic from NYU Langone Health
• Preparing to Learn from Home from Victoria State Government (Australia)
• ‘This is hell’: Parents and kids hate online learning, but they could face more of it from USA Today
• “When Should My Child Go Back to School?” is the topic discussed by a school nurse and a child neurologist in an educational series sponsored by the Child Neurology Foundation and the American Academy of Pediatrics
• Teaching Children with Special Needs at Home Recorded Webinar Series  The staff of the Autism Society SE WI and guests from Gemiini Systems, a Special Ed eLearning company, have provided a series of free webinars as we partner to make it through these challenging times. Past webinars are available on their playlist on YouTube. Topics: Sheltering in Place to Stay Safe, Building Language Through Play, Keeping Busy, OK. . . Are We Really Doing This?, Working on Life Skills, Quick Behavior Tips and more
• A COVID-19 Preparedness Tool for Families and Caregivers developed by the Stanford Health Literacy Lab
• Coronavirus: Caring for Kids with Special Health Needs article and recording from KidsHealth at the Nemours Foundation
• Ensuring Support Services for Youth with Disabilities and Special Health Care Needs Amid COVID-19 – A Zoom conversation from PolicyLab at Children’s Hospital of Philadelphia, featuring parents, educators, and physicians.
• Coping with Crayons: Kid-Friendly COVID-19 Information– To help children understand the disruption in their lives, Children’s Hospital of Richmond at Virginia Commonwealth University created a coloring book to provide COVID-19 information that children of all ages can easily digest and understand. An article from the Children’s Hospital Association notes that the activity book, available online and in print, also can help parents gauge their children’s feelings about the pandemic.
• CDC Toolkit for Young Adults (15-21) includes printable fact sheets
• Voluntary National Guidelines for Providing and Receiving Respite Safely During the COVID-19 Pandemic from ARCH National Respite Network and Resource Center
• Madison Neighborhood COVID-19 Testing
• The Impact of Lost Therapy Services During COVID-19 and What Parents Can Do in the Interim (Video) from Child Neurology Foundation
• Cloth Face Coverings in School: What Families Need to Know from WI DHS
• Staying Resilient Through the Challenges of Autism During COVID-19 from The Mighty
• COVID-19 Diversity, Equity and Inclusion Resources
• To Parents, From a Family in ‘COVID-19 Mode’ for 10 Years from The Mighty
• Guidance on re-opening during COVID-19 pandemic in ways that protect people with disabilities and older adults from the Wisconsin Survival Coalition
• COVID-19 Special Issue from Exceptional Parent
• How the COVID-19 Pandemic Impacts Kids with Special Healthcare Needs. On a podcast from RadioMD, which features experts from the American Academy of Pediatrics, a pediatrician who focuses on CSHCN discusses ideas for how families can cope with the pandemic, especially when the supports provided by schools are unavailable. Listen to the podcast
• Managing Home Healthcare and Access to Medical Supplies During COVID-19. A video from the Child Neurology Foundation features the father of a young adult who requires 24-hour care interviewing a home health provider about how care is changing. See the video
• COVID-19 Information for Children’s Health Advocates from National Institute for Children’s Health Quality (updated 5.24.20)
• Spanish Language friends/coworkers? Send them to Consejo Latino Para la Salud for videos, testing information and more about COVID-19 from the Latino Health Council
• Being Prepared: What Families Can Do Now Family Voices of Wisconsin Spring Newsletter
• Resources on COVID-19 to Use and Share from The ARC Wisconsin
• Supporting Individuals with Autism through Uncertain Times from AFIRM (Autism Focused Intervention Resources and Modules)
• ABC for Health (Health insurance/benefits) information during COVID-19
• COVID-19 Information By and For People with Disabilities–put together by self-advocates in Vermont
  • English version
  • Spanish version
• COVID-19 Response and Resources from Autism Society

30th Anniversary of the ADA

• Celebrate the 30th Anniversary of the ADA with this Collection of Resources from The Pacer’s National Parent Center on Transition and Employment

Resources for Families with Younger Children

• COVID-19 Child Care Resources from WI Department of Children and Families
• COVID Resources for Families from Wisconsin Alliance for Infant Mental Health
• Updates and Resources for Wisconsin Child Care Providers, Children and Families from Wisconsin Early Childhood Association
• Resources from Wisconsin Alliance for Infant Mental Health
• Office of Early Learning from WI Department of Public Instruction
• Child Care Resources from WI Department of Children and Families
• Child Care Resources for Families and Providers from WI Department of Children and Families
• Tips for Families from Zero to Three
• Supporting younger children from the Early Childhood Technical Assistance Center
• 6 Online Therapy Tips for Preschoolers With Disabilities During COVID-19 from The Mighty
• Tips for Supporting Infants and Young Children’s Transition as we Re-Open from Wisconsin Alliance for Infant Mental Health

Nuggets from the News

• COVID questions: Economic recovery, wedding attendance from UW-Madison News
• Wisconsin’s tribes have weathered COVID-19 better than tribes in other states. How did they do it? from the Madison.com
• Caring for an Adult with Disabilities in Retirement from PBS Newshour (with a Wisconsin family)
• Which Kids Get Sickest from COVID-19? The medically complex from NBC News
• The challenge of distance learning for parents of children with special needs from PBS Newshour
• In-home nurses caring for youth with special needs during COVID-19 from KSTP.com
• Mom Equips Ambulances with Sensory Kits from Disability Scoop

Mental Health Resources

• August Newsletter featuring the Feelings Thermometer, Exploring Racial Equity and more from the WI Office of Children’s Mental Health
• Those with contamination OCD face extra challenges during Pandemic from Rogers Behavioral Health
• Finding hope and healing for children suffering from trauma from Rogers Behavioral Health
• Resilient Wisconsin: Trauma-Informed News and Notes, July 2020 includes information on cyberbullying
• COVID-19 Guide to Supports for People Living with Mental Health and Substance Abuse Concerns from Resilient Wisconsin
• Mental Wellness Newsletter from WI Office of Children’s Mental Health (4.13.20)
• Blogs and Webinars from Rogers Behavioral Health
• UW Department of Psychiatry has put together some awesome mental health resources
• Staying Resilient During COVID-19 Compassion Resilience Toolkit from Wise and Rogers InHealth
• Well-Being Toolkit and Resources from Center for Healthy Minds (UW Madison)
• Handout on Anxiety and Autism–helpful tips from Martha Walter who presented at the CoP ASD/DD in March. (I think some of us might be experiencing some anxiety recently).  Presentations from the CoP ASD/DD Anxiety and Autism gathering are available
• Mental Wellness Newsletter including an Anxiety Grounding Technique from WI Office of Children’s Mental Health (5.27.20)
• The Science of Happiness for KIDS! Optimism, resilience, growth mindsets, courage, confidence, and well-being are skills that kids can learn at any age
• Resilient Wisconsin: Trauma-informed News and Notes, June 2020 from Wisconsin Department of Health Services

Resources for Teens/Preparing for Transition to Adulthood

• Family Voices has resources for every stage of your child’s life. This includes your teen’s move from children’s services to adult long-term support programs like IRIS. Our new fact sheet, Working with an IRIS Consultant, is a guide on what to expect from your IRIS Consultant (IC) and how to partner with your IC to decide the best way to use your IRIS budget to get goods and services you need. You can find our new IRIS fact sheet at familyvoiceswi.org/resource-library/working-with-an-iris-consultant
• Inspiring Possibilities Newsletter including articles on Virtual IEP Meetings, Distance Learning and Challenging Behaviors and Keeping Students Motivated from Home from PACER’s National Parent Center on Transition and Employment
• Addressing the Mental Health of “Quaranteens“ from Family Voices
• 6 Tips for Teens from WI Office of Children’s Mental Health (4.29.20 newsletter)
• Supporting Teenagers and Young Adults from Child Mind Institute
• National Parent Center on Transition and Employment

Children and Youth with Special Health Care Needs/Maternal and Child Health

• For Those Born With Rare Diseases, Early Diagnosis Can Save Lives from National Institute for Children’s Health Quality (NICHQ)
• Making Fathers Visible in Maternal and Child Health from National Institute for Children’s Health Quality (NICHQ)
• Innovative Strategies for Promoting Developmental Health in Rural Alaska from National Institute for Children’s Health Quality (NICHQ)
• Considering a Complementary Health Approach? information from the National Institutes of Health
• Families of Children with Special Needs are Suing in Several States. Here’s Why. from NPR
• We’re Missing Kids with ASD: Strategies to Improve Screenings from Medscape

Southern Regional Center for CYSHCN Conversations on Showing Up for Kids!

• Camp Cancelled? Ideas for Summer 2020 PART TWO!(Live June 17, 2020) Recording available on YouTube
• Camp Cancelled? Ideas for Summer 2020 (Live June 10, 2020) Recording available on YouTube
• Special Education and IEPs (Live June 3, 2020) Recording available on YouTube
• Rural Wisconsin: The Good, the Bad and the Ugly (Live May 27, 2020). Recording available on YouTube
• Anxiety: Ideas to help our kids be calm(er) and (more) focused (Live May 20, 2020). Recording available on YouTube
• What we can learn from a virtual school (Live May 13, 2020). Recording available on YouTube
• Learning from home and Neurodiversity (Live May 6. 2020). Recording available on YouTube