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For people with Down syndrome, family members, caregivers and professionals.
Review our COVID-19 Resources
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Many states and communities have lifted stay-at-home restrictions. We have received questions about whether it is safe to resume certain activities such as going to restaurants, getting haircuts, trav
UPDATED JUNE 2020 : On June 9, the Office for Civil Rights (OCR) at the U.S. Department of Health and Human Services (HHS) announced that it had reached a resolution on the first federal complaints re
Visiting a hospital or clinic can be a stressful or frightening experience for some individuals with Down syndrome. The stress and fear can be increased if the healthcare providers are unfami
*Please note: this article discusses viral testing used to diagnose if an individual currently has COVID-19. This article does not discuss antibody testing used to determine if an individual was expos
Reports of potential discrimination in medical treatment for individuals with intellectual and developmental disabilities have caused fear, anxiety, and anger within the Down syndrome community. Depar
In light of the COVID-19 pandemic, many healthcare organizations - including ours - are encouraging patients to avoid coming to clinics and hospitals (when possible and if appropriate). Video appointm
Many organizations are compiling COVID-19 resource lists. We have included links to some of them below. The amount of information about COVID-19 can be overwhelming and can cause anxiety and
UPDATED JULY 2020: Additional information related to this topic can be found in our resource " Returning to School or Work in Fall 2020 ." UPDATED JUNE 2020: Additional information r
UPDATED APRIL 2021: Additional information related to this topic can be found in our resource " Travel after COVID-19 Vaccination ." UPDATED JUNE 2020: Additional information related
This booklet for individuals with Down syndrome explains death using easy-to-read language. It is provided by Down's Syndrome Scotland (www.dsscotland.org.uk/resources/publications/).
This list of resources was compiled by Ann Garcia and Grace O'Connor, patient advocates at the Adult Down Syndrome Center. Some of these resources are specific to Illinois residents - they are
The resources below can be used by individuals with Down syndrome, their families and caregivers, and their health care providers during the transition from pediatric to adult health care. G
This is a handout with information on coping with transitions (such as leaving high school, changes in family dynamics, etc.) and the feelings of loss and grief that can accompany these transitions.
This list of resources was compiled by Grace O’Connor and Ann Garcia, patient advocates at the Adult Down Syndrome Center. Some of these resources are specific to the greater Chicagoland are
Some of these resources are specific to the greater Chicagoland area and/or Illinois. If you are looking for resources in another region, we recommend reaching out to a local Down syndrome parent orga
The Trisomy 21 Toolkit for Transitioning to Adult Medical Care outlines steps individuals with Down syndrome or other intellectual disabilities can take toward building independence, planning for the
While special education services are an entitlement, adult services are based on eligibility and availability of funding. If you are eligible and funding is available, services can be accessed. In the
People with and without Down syndrome experience grief and sadness when a loved one dies. We have learned from individuals with Down syndrome and their families that grief can be experienced different
Ways to Help Support Someone with Down Syndrome Who is Grieving: Acknowledge and normalize the person’s feelings. It’s important for someone to know that their feelings, whatever t
I’ve heard it said that everyone experiences loss in their lives, although some people have more than others. People with Down syndrome encounter situations involving grief and loss just lik
This resource from the National Down Syndrome Congress is a tool for adult siblings who are preparing to become more involved in the support and care of their loved ones with Down syndrome. A list of
Please note: The information on this site is for educational purposes only and is not intended to serve as a substitute for a medical, psychiatric, mental health, or behavioral evaluation, diagnosis, or treatment plan by a qualified professional. We recommend you review the educational material with your health providers regarding the specifics of your health care needs.