Government Affairs

What is Advocacy?

Advocacy is defined as any action that speaks in favor of, recommends, argues for a cause, supports or defends, or pleads on behalf of others. The DSAGC is involved in advocacy work on behalf of children and adults with Down syndrome, their families and the Down syndrome community at large. The following is a list of some typical DSAGC advocacy work activities.

Educating legislators on the need to provide information about issues impacting the Ds community.
Educating the public about the legislative process. Part of this involves introducing members of the Ds community to the legislators who represent them.
Producing relevant resources that reflect the story of the Ds community.
Educating the Ds community and the community at large on the issues that impact people with Down syndrome and their families.
Lobbying or advocating for or against a specific piece of legislation that impacts the Ds community.

advocacy 101 training powerpoint

Government Affairs Committee

The Government Affairs Committee of the DSAGC is comprised of a group of concerned parents and professionals, who have a passion for both advocacy work and the mission of DSAGC and advocacy work. Their role is to spearhead any advocacy efforts on behalf of all the individuals with Down syndrome and their families throughout Greater Cincinnati. This committee meets every two or three months to discuss next steps in our advocacy efforts. Here are some roles and projects that the committee is involved in:

Follow and publicize to individuals and families relevant local, state, and national legislative and regulatory developments impacting the Down syndrome community.
Seek input from individuals and families for ways in which government advocacy can support the mission of the DSAGC.
Recommend advocacy efforts to the DSAGC Board of Directors to support the mission of the DSAGC.
Mobilize and engage others in advocacy efforts, which will provide a broader base of support.
Coordinate advocacy efforts with other regional and national Down syndrome organizations, such as the National Down Syndrome Society, the Down Syndrome Affiliates in Action as well as other Down syndrome affiliates in Ohio, Kentucky and Indiana.

NDSS DS-Ambassadors Program

The DSAGC collaborates with the National Down Syndrome Society in a nationwide advocacy initiative called the NDSS DS-Ambassadors program. DS-Ambassadors are volunteer advocates of all abilities committed to taking part in the democratic process by serving as liaisons between the NDSS and their Congressional Delegations. The overarching goal of this program is to build long-lasting relationships with US Senators and US Representatives to continually raise awareness, educate and advocate for public policy solutions that benefit the Down syndrome community at the federal level. The following are some key objectives for the DS-Ambassadors program:

Strengthen and organize the Down syndrome community’s grassroots advocacy network across the US.
Be more effective on Capitol Hill by building relationships in Washington, DC with Members of Congress and their staff.
Engage more affiliates and advocates to provide valued input and feedback to NDSS on our advocacy efforts, programs and key initiatives.
Grow the DS-Ambassadors program to 535 DS-Ambassadors – one for each Senator and Representative.

ndss ambassador program powerpoint

Ohio Pro-Information Bill

2014 saw the passing of Ohio's Pro-Information bill, patterned after similar bills that have passed in Kentucky and Massachusetts in the last few years. The bill requires health care providers to present parents with up-to-date, evidence-based information about Down syndrome upon the parents receiving a prenatal or postnatal diagnosis. Part of what is passed onto parents is information on how they can connect to local parent support organizations as well as other local resources that will be available to them.

The reason this bill is so crucial is because many health care providers continue to rely on old information about Down syndrome and are unequipped to appropriately deliver a Down syndrome prenatal or postnatal diagnosis. This is critically important at this time because parents have to face a reality of the diagnosis that they did not expect - nor do they typically understand, while under a great deal of stress.

Almost identical laws were passed in Kentucky and Massachusetts with unanimous, bipartisan support.

Click here to see the approved act

Ohio's Down Syndrome Non-Discrimination Act

The Down Syndrome Non-Discrimination Act, the Ohio law recently signed by Governor John Kasich, makes it illegal for doctors to perform abortions in cases where prenatal testing reveals the fetus has, or likely has, Down syndrome. Doctors will face felony charges and possible revocation of their licenses; women seeking these abortions will not be penalized.

Click here to read DSAGC's full statment

Advocacy Links

U.S. House of Representatives Congressional Leaders

Here is the list of U.S. House of Representatives Congressional Leaders who serve the people living within the 12-county radius of the DSAGC. To find your exact representative, go to www.house.gov/representatives and enter in your zip code (at the top right side of the page). Once on this website, you can click on the name of your representative and you will be directed on how you can contact them and how to get more information from their office.

U.S. Senators

Here is the list of U.S. Senators representing the states that make up the DSAGC. Go to www.senate.gov and use the ‘Find Your Senator’ scroll down menu bar (at the top right side of the page) to find your Senator by state. Once you are on the right state page, you will see more information on how you can contact your Senators and how to get more information from their office.

Kentucky Cabinet for Health and Family Services related to providing information on Down syndrome

http://chfs.ky.gov/dph/mch/ecd/DownSyndromeInformation.htm