PRISMS is here to help during this uncertain time. We have compiled a list of resources here that you can use to meet the many challenges in the time of COVID-19. If you have found a resource that you think should be shared with the community, please let us know by emailing us at firstname.lastname@example.org.
Please note that these resources are geared towards those in the US – check out our international partners for more tailored resources in other countries.
General COVID-19 Information
- Public health guidelines from the Centers for Disease Control
- Research updates from the National Institutes of Health
- Guidelines from the US Government
- Updates from the US Food & Drug Administration
- Coronavirus Resources Center from Johns Hopkins University
- COVID-19 Screening Tool from Apple and the CDC
- Managing Anxiety and Enhancing Self Care by Rebecca Foster, PhD
- Supporting Your Child with SMS at Special Times webinar by Barbara Haas-Givler, M.Ed, BCBA
- Addressing Speech, Language, and Communication Needs in Individuals with SMS during the COVID-19 Pandemic by Christine Brennan, PhD CCC-SLP
- Prevention Versus Intervention: Effective Behavioral Strategies for Children with Smith-Magenis Syndrome by Barbara Haas-Givler, M.Ed, BCBA
- Behavior Management in SMS by Mary Beall, M.Ed and SMS parent
- Tricks Up Our Sleeves: Helping Our Children Manage Their Behavior by Beverly Frey, SMS parent
- Medical Management Guidelines
- PRISMS Webinars
- PRISMS Parent Support Facebook Group
- Resources from the National Organization for Rare Disorders – includes many links out to info on insurance coverage, medication access, and other relevant issues.
- Resources from the ARC
- State-by-State Status of Emergency Medicaid Waivers
- My Child is home from school or work or a day program! What do I do! from the National Fragile X Foundation
- My Child is Home… Now What? Webinar from the National Fragile X Foundation
- Early Childhood Technical Assistance Center for information on Tele-Intervention and Distance Learning
- American Occupational Therapy Association page on COVID-19
- American Speech-Language Hearing Association page on COVID-19
- Free Online Learning Resources
- 9 Tips for Parents Navigating Online Learning
- Sesame Street Caring for Each Other Initiative
At Home Therapies & Activities
- Heavy Work Activities from Home
- 40 Heavy Work Activities
- Your Therapy Source
- 134 WH Questions for Speech Therapy Practice
Communicating with Your Child about COVID-19
- Guidance from the National Association of School Psychologists
- Plain Language COVID-19 Information from Green Mountain Self-Advocates/Self-Advocacy Resource and Technical Assistance Center
- Social Story from the Autism Educator to help explain COVID-19
- Financial Navigation Resources
- Financial Assistance Program from the National Organization for Rare Disorders
- Financial Support for rare disease patients diagnosed with COVID-19
Mental Health Support
- Contact the Suicide Prevention Lifeline at 1-800-273-TALK (8255) or the National Helpline at 1-800-662-HELP (4357) for confidential supports and intervention.
- The My3 app is a wonderful resource
- Reach out to Crisis Text Line by messaging HOME to 741741 (in the US and Canada).
- Angel Aid Cares offers support groups and trainings for rare disease caregivers
- Take yourself or your loved one to your nearest emergency room for immediate assessment and intervention. Call 911 if additional assistance is needed.