The Triangle Down Syndrome Network recently added a Director of Advocacy position. Donna Beckmann, who has been involved with TDSN since her son Thomas was born in 2000, is taking on the role. For 18 years, TDSN has been a source of support and education for families and the community. TDSN Executive Director Kari Alberque said the decision to add this position came out of last year’s strategic planning process.
“TDSN developed a new vision for the organization which is to be an effective and comprehensive resource on Down syndrome in the Triangle region and throughout North Carolina,” Kari said. “We feel strongly that it is our role to educate families on how best to advocate for their child and to raise awareness among the decision makers in our region and state.”
Donna’s first projects will be to organize Down Syndrome Advocacy Day on World Down Syndrome Day (March 21), develop relationships with policy makers and set up an advocacy committee, which parents are encouraged to join. But Donna sees her role as also supporting parents in their roles as advocates.
“Advocacy can happen anywhere – in an IEP meeting ensuring your child is receiving adequate services or meeting with your elected officials and explaining the lack of employment options for individuals with Down syndrome,” Donna said. “Empowering parents to find their voice and use it to benefit the greater Down syndrome community is what I am passionate about.”
Donna has been involved in TDSN in many ways since her son’s birth. She served on the TDSN board from 2013-15 and for the past six years she has taken her message of inclusion, respect and disability rights to the state level. She assisted with the recently created NC Health and Human Services web pages about Down syndrome, making sure accurate and updated information is being given to families and health care providers. (Check it out here: https://www.ncdhhs.gov/down-syndrome-our-community)
Hoping to strengthen our community’s role and not duplicating other group’s actions, Donna still recommends utilizing the services already available to our community.
“We do not want to reinvent the wheel. If you need help writing IEP goals, the ECAC is the place to go,” Donna said. “However, our goal is to bring you the tools to allow you to sit confidently in an IEP meeting. Advocacy is not just lobbying for legislation. Advocacy is making things happen when and where you need it. The Down syndrome community needs more voices spreading the same message. The long term end goal is to improve the lives of individuals with DS and their families.”
Looking beyond the immediate concerns for her son led Donna to try and tackle the long-term issues facing our community.
“I was pretty successful in having Thomas fully included in school and community. However, several years ago, I realized that if the next 10 years go by as quickly as the past 10 years, we were not going to be ready for Thomas to be as independent as possible as an adult. Our children are guaranteed an education until they are 21 years old, but what comes next? The sad truth is – not much, and unfortunately, most of us are focused on the here and now. That is when I participated in North Carolina Partners in Policymaking. It really changed the way I look at things and it empowered me to take a look at the big picture and work to affect system-wide policy change, because that is what we need. That change will not come until we empower more parents. As the Director of Advocacy, I will convey the importance of advocacy and empower parents to be the their child’s greatest advocate.”