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For people with Down syndrome, family members, caregivers and professionals.

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Resources for Siblings

Author: Adult Down Syndrome Center - Resource List

The resources in the Families and Caregivers  section of our Resource Library are intended for a broad audience of parents, siblings, friends, and caregivers of individuals with Down

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Grief and Loss Podcast Episodes

Author: Rose Reif, LCMHC, CRC, BC-TMH - Multiple Organizations

Rose Reif, a licensed clinical mental health counselor, certified rehabilitation counselor, and qualified developmental disability and mental health professional, has been featured on two podcast epis

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Staff Turnover

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

For people living in a group home or participating in day programs, the staff members often become like family. This is especially true if the person does not have other family involved in his life bu

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Emergency Preparedness Resources

Author: Adult Down Syndrome Center - Resource List

Recently, we were asked about emergency preparedness and safety resources for people with Down syndrome. We started to research the topic and found numerous resources that may be helpful to people wit

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Health Benefits of Chores

Author: Katie Frank, PhD, OTR/L - Occupational Therapist, Adult Down Syndrome Center

Just thinking about chores can make us want to groan but doing chores can be beneficial for our physical and mental health. Doing chores is one way to incorporate more physical activ

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Resources on Developing Greater Independence

Author: Adult Down Syndrome Center - Resource List

Becoming more independent is a goal for many adolescents and adults with Down syndrome. This goal may vary significantly from person to person. It can range from wanting to become more independent wit

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Employment Resources

Author: Ann Garcia and Jennifer Smid - Patient Advocates, Adult Down Syndrome Center

This list of resources was compiled by the patient advocates at the Adult Down Syndrome Center. Some of these resources are specific to the greater Chicagoland area and/or Illinois. If you are looking

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College and Vocational Training Resources

Author: Ann Garcia - Patient Advocate, Adult Down Syndrome Center

This list of resources was compiled by Ann Garcia, patient advocate at the Adult Down Syndrome Center. Most of these resources are specific to the greater Chicagoland area and/or Illinois. If

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Healthcare Experiences of Patients With Down Syndrome Who Are Black, African American, of African Descent, or of Mixed Race

Author: Krell et al. - American Journal of Medical Genetics Part A (2022)

Abstract Scant research has explored the healthcare experiences of people with Down syndrome (DS) in the United States who are Black, African American, of African descent, or of mixed race. The purpos

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Bias in the Health Care System: Advocating for People with Down Syndrome Webinar (10/19/2022)

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

Brian Chicoine, MD, presented a webinar called "Bias in the Health Care System: Advocating for People with Down Syndrome" on October 19, 2022. The webinar was hosted by LuMi

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People Living with Down Syndrome in the USA, Europe, Australia, and New Zealand: Births and Population

Author: deGraff, Buckley, and Skotko - Fact Sheets

The fact sheets linked below share estimates of the numbers of babies born and people living with Down syndrome in the United States and Europe.  USA Fact Sheet   Last updated Novemb

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Overview and Types of Respite

Author: Ann Garcia - Patient Advocate, Adult Down Syndrome Center

Respite care is short-term relief for primary caregivers. It can be used for as short as a few hours to as long as several weeks. Respite care can be provided in a variety of settings including the in

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Respite Organizations and Providers

Author: Ann Garcia - Patient Advocate, Adult Down Syndrome Center

The list below includes information about respite organizations and providers in the greater Chicagoland area and/or Illinois. The types of respite provided are also included: In-Hom

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Adult Sibling Toolkit

Author: National Down Syndrome Congress - Resource

The Adult Sibling Toolkit 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

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Traveling the Road Towards Independence Webinar Recording (12/14/2021)

Author: Lina Patel, PsyD - Down Syndrome Association of Delaware

On December 14, 2021, the Down Syndrome Association of Delaware hosted a webinar called, "Traveling the Road Towards Independence." The presenter was Lina Patel, PsyD. View recording

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Helping Children and Adults with Down Syndrome to Cope with Grief Webinar Recording (7/28/2021)

Author: Rose Reif, MS, LCMHC, CRC, BC-TMH - Down Syndrome Association of Delaware

On July 28, 2021, the Down Syndrome Association of Delaware hosted a webinar called, "Helping Children and Adults with Down Syndrome to Cope with Grief." The presenter was Rose Reif,

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Let's Talk about Death: A Booklet about Death and Funerals for People with Down's Syndrome

Author: Down's Syndrome Scotland

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/).

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Post-Secondary Transition Resources

Author: Ann Garcia and Grace O'Connor - Patient Advocates, Adult Down Syndrome Center

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

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Health Care Transition Resources

Author: Ann Garcia and Grace O'Connor - Patient Advocates, Adult Down Syndrome Center

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

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Coping With Transitions, Loss, and Grief

Author: Melissa Levin, MSW, LICSW

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.

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Alternatives to Workshops

Author: Ann Garcia and Grace O'Connor - Patient Advocates, Adult Down Syndrome Center

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

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Trisomy 21 Toolkit for Transitioning to Adult Medical Care

Author: Children's Hospital of Philadelphia - Trisomy 21 Toolkit for Transitioning to Adult Medical Care

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

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Bereavement

Author: Down's Syndrome Association - Booklet

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

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Family Care Toolkit

Author: National Down Syndrome Congress - Resource

The Family Care Toolkit linked below is a resource created by the National Down Syndrome Congress with the support of the Global Down Syndrome Foundation. It helps families and primary caregivers gath

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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.

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