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Increased Need for Services and Support

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

Key Points For people with and without Down syndrome, our needs may change as we age and/or develop health issues. The change in the needs may be temporary or permanent. There are a variety of ways to

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Aging in Adults with Down Syndrome Webinar Recording (1/29/2024)

Author: Brian Chicoine, MD, and Hannah Graham, MD - Adult Down Syndrome Center

Title:  Aging in Adults with Down Syndrome Date:  January 29, 2024 Presenters:  Brian Chicoine, MD and Hannah Graham, MD Host Organization:  Down's Syndrome

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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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Aging and Down Syndrome: A Health & Well-Being Guidebook

Author: National Down Syndrome Society - Resource

The resource linked below is a guidebook from the National Down Syndrome Society. According to the Introduction, "Adults with Down syndrome, along with their families and caregivers, need acc

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Aging and Life Expectancy

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

Today, people with Down syndrome (DS) are living longer and healthier than any other time in the past. In 1900, the life expectancy of people with DS was 9 years. By 1984, the life expectancy

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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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Tips for Going Up and Down Stairs Safely

Author: Katie Frank, PhD, OTR/L and Abby Rowley, LCSW - Adult Down Syndrome Center

Going up and down stairs can be challenging for some people with Down syndrome. Aging, differences in depth perception, unsteady gait, and other issues may contribute to difficulty with navigating sta

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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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End-Of-Life and Down Syndrome Guidebook

Author: National Down Syndrome Society - Resource

The resource linked below is a guidebook from the National Down Syndrome Society (NDSS). According to the Introduction, the aim of the guidebook is to "provide guidance for the crossroads and

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Diagnostic Overshadowing: "All Is Not Down Syndrome"

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

Many families have reported that, when they have told a health care provider about a symptom their loved one with Down syndrome is experiencing, the provider has, in effect, said, “It is jus

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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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Advance Directives - Forms for Illinois Residents

Author: Illinois Department of Public Health - Website

An advance directive is a written statement you prepare that expresses how you want medical decisions made in the future should you not be able to make them yourself. Illinois law allows you

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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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Alzheimer's Disease Prevention and Healthy Aging in People with Down Syndrome Webinar Recording (5/18/2022)

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

Title:  Alzheimer's Disease Prevention and Healthy Aging in People with Down Syndrome Date:  May 18, 2022 Presenter:  Brian Chicoine, MD Host Organization:  

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Considering Dignity of Risk in the Care of People with Intellectual Disabilities: A Clinical Perspective

Author: Chicoine & Kirschner - Perspectives in Biology and Medicine (2022)

Abstract The dignity of risk implies respect for individuals' right to make their own decisions, to participate in a broad range of desired activities, even if those activities have risk, and

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An Introduction to Benefits: Federal and State Programs Available in Illinois

Author: Suzanne Aaron, Information & Outreach Specialist - The Arc of Illinois, Illinois Life Span Program

In January 2022, Suzanne Aaron, an information & outreach specialist from the Illinois Life Span Program of the Arc of Illinois, presented a webinar called "An Introduction t

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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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Mechanistic Analysis of Age-Related Clinical Manifestations in Down Syndrome

Author: Chen et al. - Frontiers in Aging Neuroscience (2021)

Abstract Down syndrome (DS) is the most common genetic cause of Alzheimer's disease (AD) due to trisomy for all or part of human chromosome 21 (Hsa21). It is also associated with other phenoty

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An Introduction to Developmental Disability Resources, Organizations, and Terms - Webinar Slides

Author: The Arc of Illinois - Presentation

In May 2021, the Arc of Illinois hosted a webinar called, "An Introduction to Developmental Disability Resources, Organizations, and Terms." It was a webinar for family members and c

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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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