Important Resources

Guidelines for Reporting & Writing About People with Disabilities

When considering an upcoming article or report about an individual with Down creesyndrome, or any other developmental delay, it’s important to chose your words carefully. Please review the following guidelines as a tool in making sure you make the best impression by using words that do not hurt or offend individuals with Down syndrome, or their family and friends.  Click here to download this file.

21 Ideas for Raising Awareness About Down Syndrome

Click here, for 21 Ideas for Raising Awareness about Down syndrome!

National Organizations

Best Buddies

Providing opportunities for one-to-one friendships and integrated employment for people with disabilities.

Best Buddies Indiana

Buddy Walk
The Buddy Walk is a one-mile walk in which anyone can participate without special training. Buddy Walk was established in 1995 by the National Down Syndrome Society to celebrate Down Syndrome Awareness Month in October and to promote acceptance and inclusion

The Global Down Syndrome Foundation

The Global Down Syndrome Founcation is a public non-profit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through Research, Medical Care, Education and Advocacy. Formally established in 2009, Global’s primary focus is to support the Linda Crnic Institute for Down Syndrome, the first academic home in the United States committed solely to research and medical care for people with Down syndrome. Since Down syndrome is the least-funded genetic condition in the United States, fundraising and government advocacy to correct the alarming disparity of national funding for people with Down syndrome is a major goal.

Down Syndrome Affiliates in Action

The goal of the Affiliates in Action (AIA) conference is to provide parent group leaders across the country tangible resources they can use to improve their service delivery. Whether you represent a small parent group run out of your home or a large group with office space and paid staff, there is sure to be something valuable for everyone who attends.

Mosaic Down Syndrome
Site for Mosaic Down syndrome, a chromosomal variant of Down syndrome
National Association for Down Syndrome
NADS is the oldest organization in the country serving individuals with Down syndrome and their families.
National Down Syndrome Congress
It is the purpose of the National Down Syndrome Congress to create a national climate in which all people will recognize and embrace the value and dignity of people with Down syndrome.
National Down Syndrome Society
The mission of the National Down Syndrome Society is to benefit people with Down syndrome and their families through national leadership in education, research and advocacy.

Spread the word to end the word! Act Now! Pledge your support to eliminate the demeaning use of the r-word.  Add the badge to your website or blog by clicking here.

State Organizations

The Arc of IndianaThe Arc of Indiana was established in 1956 by parents of children with intellectual and other developmental disabilities who joined together to build a better and more accepting world for their children.
About Special KidsThe place for families and professionals in Indiana to go to “ASK” questions about children with special needs and to access information and resources about a variety of topics such as health insurance, special education, community resources and medical homes.
IN*SOURCEIN*SOURCE is a parent organization. Through the work and dedication of the Board of Directors, the staff and many volunteers, virtually all of whom are parents of persons with disabilities, IN*SOURCE, utilizing a proven parent to parent model, has provided quality assistance and support services and educational resources to the community of individuals and organizations that serve and support persons with disabilities. We have worked to help countless families confront the complexities and what are often the challenges of having a loved one with special needs.
Special Olympics Indiana
The Indiana Governor’s Council for People with Disabilities The Indiana Governor’s Council is an independent state agency that facilitates change. Their mission is to advance independence, productivity, and inclusion of people with disabilities in all aspect of society. This mission is accomplished through planning, evaluation, collaboration, education, research and advocacy.

Medical and Cash Assistance

Indiana Children’s Special Health Care Services

Indiana Children’s Special Health Care Services (CSHCS) provides supplemental medical coverage to help families of children who have serious, chronic medical conditions, age birth to 21 years of age, who meet the program’s financial and medical criteria, pay for treatment related to their child’s condition. Click here to learn more.

Indiana Home and Community Based Waiver Services

Indiana’s Medicaid Home and Community-Based Waiver Program as well as a variety of other home and community services funded by various programs in Indiana. A guide for consumers can be found here.

Supplemental Security Income

Down syndrome is considered to be a presumptive condition by the Social Security Administration. This means that if your family meets a certain income guideline (low-income families) your child could receive cash assistance and Medicaid through Supplemental Security Income also known as SSI.

It is important that you apply as soon as your child is born if you feel you may qualify, if you are not sure if you qualify we encourage you to apply to find out. If your baby is still hospitalized most hospital social service departments will assist in completion of this application.

You can also apply in person by visiting:

RM 685


SSA offers a SSI Child Disability Starter Kit (for children under age 18) online. You can view her by clicking here.

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