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

Duration: 23 ms, Number of Results: 29

Showing 1 - 24 of 29
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When Things in My Life Change Story

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

When Things in My Life Change   This visual story discusses how to manage changes that may occur throughout our lives. Additional visuals are available in the  Transitions  

When Staff Members Leave Story

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

When Staff Members Leave   This visual story explains why staff members may leave their job, how we might feel, and how to cope with the change. Additional visuals are available in the&nb

Wearing My Hearing Aids Story

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

Wearing My Hearing Aids   This visual story explains why it is important to wear our hearing aids and describes when to wear our hearing aids and how to take care of them.  

Getting Ear Wax Removed

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

This Getting Ear Wax Removed Visual    explains what happens when we get our ears cleaned out. This visual can help individuals with Down syndrome know what to expect when g

Cerumen Impaction (Ear Wax Buildup)

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

Key Points Cerumen impaction is obstruction of the ear canal with ear wax. It is a problem that is more common in people with Down syndrome. There are treatments that can be done at home to prevent an

Hearing Loss in Adults with Down Syndrome

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

Overview of hearing loss Hearing involves several steps as the sound passes from the ear to the brain. The ear is divided into three parts: the outer, middle, and inner ear. Hearing impairment, which

Cholesteatomas

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

What are cholesteatomas? A  cholesteatoma is a collection of skin cells that become more fibrous and build up in the middle ear (where the small bones are that are part of our hearing mechani

Moving to a Group Home Story

Author: Michele Mattox, LCSW, LISW-CP - No Limits Counseling & Coaching

The story linked below talks about moving to a group home, including how to deal with new emotions and managing a schedule. Moving to a Group Home     The story was created

Alternatives to Guardianship

Author: Ann Garcia, Patient Advocate - Resource List

Families trying to decide what level of support would work best for their adult family member with Down syndrome may want to look at options besides guardianship . Individuals with Down syndrome and t

Guardianship

Author: Ann Garcia, Patient Advocate - Resource List

Whether you decide to obtain guardianship for your child is an individual family decision that should be considered carefully. If your child is 18 years old and is unable to make decisions about finan

Down Syndrome for the Otolaryngologist: A Review

Author: Zalzal & Lawlor - JAMA Otolaryngology - Head & Neck Surgery (2023)

Abstract Importance:  There are many features of Down syndrome that prompt referral to an otolaryngologist. As the lifetime prevalence and life expectancy of individuals with Down syndrome in

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

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

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

Evaluation of Upper Airway Stimulation for Adolescents with Down Syndrome and Obstructive Sleep Apnea

Author: Yu et al. (2022) - JAMA Otolaryngology-Head & Neck Surgery

Abstract Importance :  Patients with Down syndrome have a high incidence of persistent obstructive sleep apnea (OSA) and limited treatment options. Upper airway hypoglossal stimulation has be

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

Financial Wellness: A Guide for Individuals with Disabilities, their Families and Caregivers

Author: National Down Syndrome Society - In collaboration with Voya Cares

In collaboration with Voya Cares, the National Down Syndrome Society published a guidebook on financial wellness. Topics include the basics of financial wellness, government benefits, workplace benefi

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

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

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

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

Modeling, Imitation, and Mutual Participation

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

Observing someone demonstrate appropriate behavior, watching a parent or friend model healthy activity, or having a mentor to observe and imitate are all ways we learn a variety of healthy behaviors i

People First

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

When we started the clinic, families spoke to us about what they needed as well as what they expected and what was most likely to help us connect with families and people with Down syndrome. One of th

Memorial/Life Celebration

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

I spoke at a patient’s memorial/life celebration a few days ago and I would like to share some of my words. I would like to go back to 1954, the year Don was born. Life expectancy of a perso

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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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