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

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Toilet Hygiene

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

Thorough toilet hygiene is difficult for many individuals with Down syndrome. However, there are several options to increase independence and success with toilet hygiene. Use pre-moistened wipes . Be

Tips for Managing Medications

Author: Monica Prindiville, OTS and Katie Frank, PhD, OTR/L - Occupational Therapy Student and Occupational Therapist

Whether on one medication or many, people with and without Down Syndrome have difficulty taking medication as prescribed. The following tips can help simplify medication management and prevent missed

Adaptive Clothing

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

Dressing can be difficult for some individuals with Down syndrome, in part because bilateral coordination and dexterity skills can be challenging for many individuals with Down syndrome. I ha

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,

Bathing and Showering Tips

Author: Natalie Rivera, OTS and Katie Frank, PhD, OTR/L - Occupational therapy student and occupational therapist

Bathing and showering may be difficult for some individuals with Down syndrome for many reasons. Below are a variety of adaptive strategies and equipment to promote safety and independence with this s

Tips for Washing and Rinsing Hair in the Shower

Author: Adult Down Syndrome Center

Some families have shared with us that washing and rinsing hair can be a challenging task for their loved ones with Down syndrome. We have compiled a list of suggestions from families for mak

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/).

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

New Way to Learn How to Tie Shoes

Author: Katie Frank, PhD, OTR/L

This handout describes an alternative method for tying shoes that may help individuals with Down syndrome be more independent with this task.

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.

Employment Resources

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

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

College and Vocational Training Resources

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

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

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

Steps to Accessing Adult Services and Supports

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

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

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

Grief - Ways to Help Support Someone with Down Syndrome Who is Grieving

Author: Shana Sexton, LCSW - Social Worker, Adult Down Syndrome Center

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 th

Grief - 10 Things I Know

Author: Shana Sexton, LCSW - Social Worker, Adult Down Syndrome Center

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

Adult Sibling Toolkit

Author: National Down Syndrome Congress - Resource

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

Recurrent Pneumonia

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

Definition of Pneumonia  (by the Mayo Clinic ) Pneumonia is an infection that inflames the air sacs in one or both lungs. The air sacs may fill with fluid or pus, causing cough with phlegm or

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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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