Making Your Way in the World – Resources for Young People with DS and Their Families

October is Down Syndrome Awareness Month, sponsored by the National Down Syndrome Society. Down syndrome (DS) is a genetic disorder that results in intellectual and developmental disability. It can also cause physical disabilities, such as heart conditions, and sensory disabilities, such as low vision. At one time, people with DS were not expected to live beyond their early teens but, with advances in medical care, as many as 80% of people with DS will live into their 60s and beyond!

So young people with DS have much to look forward to – including college, jobs, and relationships. Here are some resources from the NIDILRR community and other resource centers which can help these young people and their families as they chart their path in life:

Find your voice

Project TEAM (Teens making Environmental and Activity Modifications) is a program developed under a NIDILRR field initiated grant. The facilitator-led program empowers youth and young adults with disabilities to identify barriers in their physical and social environment, generate solutions to those barriers, and advocate for change in their environment.

Learn about national goals for self-determination and self-advocacy in this issue brief from three NIDILRR funded Rehabilitation Research and Training Centers. Here are even more resources on self-determination and self-advocacy from the NIDILRR community and elsewhere.

Plan your future

Think College is a resource center funded by the Administration on Intellectual and Developmental Disabilities focusing on college options for people with intellectual disabilities (ID). Check out their extensive collection of resources including webinars, factsheets, and the only database of college programs specifically for people with ID. Make sure you watch their film, Rethinking College, which explores the growing movement to include students with ID in higher education.

ThinkWork! includes a NIDILRR-funded Rehabilitation Research and Training Center on Advancing Employment for Individuals with Intellectual and Developmental Disabilities (I/DD). Visit their website to explore the employment toolbox, the 44 Webinar series, and more to support someone with I/DD moving into the workforce.

The NIDILRR-funded Research and Training Center on Community Living for People with I/DD worked with Minnesota Department of Human Services to create a video series, Make Work a Part of Your Plan. The series was developed to deliver positive narratives about competitive integrated employment for individuals with disabilities in Minnesota and across the US. In a time of changing systems and services, the series provides individuals, families, and professionals with information around raising expectations for employment, as well as participation, innovative ideas, strategies, best practices, and direction for the future of employment support.

Ready to move out on your own? Check out the Everyday Skills App from AbleLink to learn community skills, personal skills, and transition and transportation skills that are important to independent living! You might also like to try the Small Steps, Big Skills game from Sandbox Learning. The fun video game teaches you some of the important skills you’ll need to take care of your home, from working in the kitchen to relaxing at the end of the day. This game was developed through a NIDILRR field initiated grant as well.

Take charge of your health

Women Be Healthy, developed by the Lurie Institute under a NIDILRR field initiated grant, features resources for women with I/DD, their caregivers, and their health professionals to help them learn about the importance of gynecological health, particularly screenings for breast and cervical cancer. Each section is tailored to the audience.

HealthMatters was developed under the NIDILRR-funded RRTC on Developmental Disabilities and Health. The evidence-based curriculum focuses on health and wellness for people with I/DD. It can be integrated into independent living and employment programs, or used on its own. Contact the center for more information on how to bring the program to your community.

For individuals with ID and their families

ABLE Accounts are tax-advantaged savings accounts for individuals with disabilities and their families. They can be used to pay for a wide range of expenses including housing, assistive technology, person support services, and much more. Learn more about ABLE Accounts from the ABLE National Resource Center.

Siblings play important roles in the lives of people with DS and other disabilities. Check out our previous blog post on the topic and visit the Sibling Leadership Network to see how you can support your brother or sister!

Two organizations worth visiting are The Arc and the National Down Syndrome Society. Both support people with DS and their families through programs, events, and informational resources.

Before we leave you, we highly recommend reading A Matter of Dignity, a 5-part series from the Minnesota Star Tribune. It documents some of the barriers people with disabilities face in housing, employment, health, and personal relationships. The last section on intimacy draws attention to some of the challenges young people with intellectual and developmental disabilities face when they explore romantic relationships.

And, lastly, we take a look at some of the research in our collection, both from the NIDILRR community and elsewhere, with regard to Down syndrome and other intellectual and developmental disabilities:

These and more are available through our document delivery service. Just give us a call!

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