CYSHCN

What’s New

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Seeking Public Input

The Governor’s Task Force on Caregiving is asking for public input on draft policy proposals to help support and strengthen the direct care workforce, increase access to care, and improve the quality of caregiving in Wisconsin. The task force would like feedback from people in Wisconsin with a wide range of perspectives and experience, including family caregivers, paid direct support professionals, people receiving care, communities of color, and people living in urban and rural settings.

Materials on the policy proposals  and a public input survey will be available on the task force website from June 29 through July 14.

BPDD Conversation Cafes

The Wisconsin Board for People with Developmental Disabilities (BPDD) is holding virtual Conversation Cafes to gather ideas for its new 5-year plan. We want to know what you think we can do to help people with disabilities and their families have more control over their lives and be more involved in their community. Join us to share your thoughts. Your voice is needed! For more information go to https://wi-bpdd.org/index.php/2020/06/16/state-plan-virtual-cafes/
or download a flyer–BPDD_Virtual_Listening_Sessions_Flyer

Preschool Development Grant listening session

Participate in a Preschool Development Grant (PDG) listening session with the Department of Children and Families. Sessions for the Southern Region will be held July 14th 6:30-8:00pm and July 20th 9:30-11:00am. There will also be a session in Spanish on July 21st 6:30-8:00pm. More information and registration is available in English and Spanish

Focus Group Opportunity for Families Who Have Children Enrolled in BadgerCare Plus/Wisconsin Medicaid
Date & Time: July 15, 11:00 – 12:00

If you are a parent/caregiver:
• Of a child younger than 10 years who is enrolled in Medicaid / BadgerCare Plus
• Who accompanies a child to pediatric well-child visits
• Who is comfortable responding to focus group questions related to your experiences with Medicaid or CHIP coverage and pediatric well-child visits

If interested, please complete the survey by July 10^th at  surveymonkey.com/r/FVWI
More information on WIFocusGroupFlyer

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

WI DHS Higher Risk/Families with CYSHCN Resources

Upcoming Webinars/On-line Conferences

Self-Care During ‘Interesting Times’: Beyond the Advice to Eat Better and Get a Good Night’s Sleep July 16th 12-1:00pm from the National Hearing Assessment and Management at Utah State University

Sick and Tired of Being Sick and Tired: People of Color, Disabilities, and Mental Health July 23rd 1:00pm from the Mental Health and Developmental Disabilities National Training Center

• Successful Relationships Between School Staff and Parents July 15th 12:00pm from the Tourette Association of America Wisconsin Chapter
• Celebrating the 30th Anniversary of the ADA–join an online interview with Temple Grandin and Nancy Gianni presented by the Community Resource Network on July 25th at 2:00pm. Attendance is limited and you must register.
• Passing State Legislature to Protect the Rights of Parents with Disabilities July 27th 2:00pm from the National Resource Center for Parents with Disabilities and Brandeis University
• Endless Possibilities Virtual Conference: A Closer Look at Invisible Disabilities August 7 from Wisconsin FACETS and partners

Employees who are Parents of Children with Disabilities (Survey) from St. John’s University

The Impact of Lost Therapy Services During COVID-19 and What Parents Can Do in the Interim (Video) from Child Neurology Foundation

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

Cloth Face Coverings in School: What Families Need to Know from WI DHS

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.

From the American Academy of Pediatrics

• COVID-19 Planning Considerations: Guidance for School Re-entry
• Return to School During COVID-19 (English)
• Return to School During COVID-19 (Spanish)
• Articles on COVID-19 (Disabilities, Foster Care, Asthma, Social Distancing and more)

Family Engagement Newsletter from WI FACETS–focus on Speech and Language Development and some cool resources for summer!

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

For Mothers of Black Children with Disabilities, Living with Twice the Fear from Forbes

2020 Juventuras Clubes Virtuales/Juventuras Virtual Clubs from Centro Hispano of Dane County

Staying Resilient Through the Challenges of Autism During COVID-19 from The Mighty

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

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)

Talking with Young Kids about Racism, Police Brutality, and Protests FVJuneeBlast2020 from Family Voices (.pdf)

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

To Parents, From a Family in ‘COVID-19 Mode’ for 10 Years from The Mighty

Resilient Wisconsin: Trauma-informed News and Notes, June 2020 from Wisconsin Department of Health Services

Considering a Complementary Health Approach? information from the National Institutes of Health

Resource List to Stay Saner at Home this Summer from Family Voices of Wisconsin

Tips for Supporting Infants and Young Children’s Transition as we Re-Open from Wisconsin Alliance for Infant Mental Health

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

Family Engagement Newsletter from WI FACETS. June’s topic is ADD/ADHD also with an article on Understanding Special Education Guidance during COVID-19.

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

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.

Mental Wellness Newsletter including an Anxiety Grounding Technique from WI Office of Children’s Mental Health (5.27.20)

COVID-19 Information for Children’s Health Advocates from National Institute for Children’s Health Quality (updated 5.24.20)

The Science of Happiness for KIDS! Optimism, resilience, growth mindsets, courage, confidence, and well-being are skills that kids can learn at any age.

A few resources for families with younger children

• 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

Governor Tony Evers proclaimed May as Resilient Wisconsin Month.

A few nuggets from the news

• 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

A few mental health resources

• 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

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.

Resources for families with younger children

• 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

UW Department of Psychiatry has put together some awesome mental health resources

COVID-19 Diversity, Equity and Inclusion Resources

Family Engagement May Newsletter from WI FACETS (Resilience and Mental Health)

A couple of resources for Teens

• 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

FREE weekly video social skills with Social Detective.

Staying Resilient During COVID-19 Compassion Resilience Toolkit from Wise and Rogers InHealth

6 Online Therapy Tips for Preschoolers With Disabilities During COVID-19 from The Mighty

Being Prepared: What Families Can Do Now Family Voices of Wisconsin Spring Newsletter

Resources for Families to Support Learning from Home During COVID-19

• Working and Learning from Home from the American Academy of Pediatricians
• Balancing Complex Care Giving and Educating Children from Complex Child
• Online Teaching Resources for Children and Families from Wide Open School (you can select that you are a family and find resources in a number of categories including Special Needs)
• Tips for Families in Supporting Their Children with Disabilities in Virtual Formats (English and Spanish) from the Florida Inclusion Network.

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. 

A LOT of resources to help support students with ASD learning from home.
https://sites.google.com/view/studentswithasdathome/home

Well-Being Toolkit and Resources from Center for Healthy Minds (UW Madison)

Resources on COVID-19 to Use and Share by The ARC Wisconsin

Supporting Individuals with Autism through Uncertain Times by 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

COVID-19 page which includes Educational Resources for teaching at home from the National Down Syndrome Society.