Since 1988, some 1,000 family members and individuals with disabilities have participated in the Leadership Series and have gone on to shape the policies and practices that have made the state a leader on disability policy.
A motivational speaker, community volunteer and three-term member of President Bill Clinton’s Committee for People with Intellectual Disabilities, Annie Forts liked to say she didn’t have Down syndrome — she had “up” syndrome, and was neither limited nor defined by her disability. It was in no small part because of her positivity and can-do attitude that, in 1995, Forts became one of the first individuals with a disability to participate in the annual New Hampshire Leadership Series at the UNH Institute on Disability (IOD), an intensive nine-month, nine-college-credit program that provides leadership and advocacy training for individuals with disabilities and their family members.
Launched in 1988, the Leadership Series has long been a marquee program of the IOD, which has served as a liaison between the state of New Hampshire and the university system to support people with disabilities and their families for more than 30 years. IOD Director of Development and Consumer Affairs Mary Schuh says Forts’ participation was pivotal to shaping both the IOD and the Leadership Series as the organization developed and evolved. “Annie taught us a lot. Going back to the early days of the IOD, she gave a presentation to the organization that helped to define the mission, vision and model for the institute,” Schuh says. “She also helped us understand how to best support individuals with disabilities as self-advocates and leaders of their own lives.” Today, roughly one-third of the 35 participants who make up each Leadership Series class are individuals with disabilities.
Forts’ pathbreaking at the IOD didn’t end with her participation in the Leadership Series. In 1997, she teamed up with the Moultonborough, New Hampshire, Lions Club to establish the Annie Forts UP Syndrome Fund, which went on to award more than $500,000 in scholarships and grants to fund enrichment opportunities for people with Down syndrome — including through the Leadership Series. In 2018, two years after Forts passed away from health complications related to her diagnosis, her family and loved ones decided the IOD was a fitting home for her legacy. In January, the IOD received a $350,000 grant from Forts’ fund to support the Leadership Series for the next 10 to 15 years.
Schuh says the new grant will help cover the significant cost to run the program — more than $6,000 per participant — and will also support expansion and enhancements. The grant will support at least two Leadership Series participants each year and will cover the operating costs for a weekend-long “Good Life” session that will honor Forts. Beginning this year, the IOD will recognize a Leadership Series participant with an award in Forts’ name.
One of the things Annie taught is what a good life looks like, and that a good life is an ordinary life full of choices and opportunities, where you are supported and recognized as a valued member of your community,” Schuh says. “Thanks to the Annie Forts UP Syndrome Fund, we now have the opportunity to ensure that individuals with disabilities and their families receive the tools they need to continue carrying out Annie’s legacy.”
