DDNJ Author Insights: University Centers on Developmental Disabilities

In the last year, like all University Centers for Excellence in Developmental Disabilities, IDRPP received a core grant from the federal government. At IDRPP, the $650,000 in core funding from the Administration for Community Living was then leveraged to bring in $33 million in revenue; meaning that for every dollar IDRPP took in from its core grant, it brought in $50.

In this month’s DDNJ Author Insights Podcast, three UCEDD directors discuss the impact their core grants have on their organizations, and the impact their organizations have on the lives of people with disabilities in their states and the nation.

In the 1960s and 70s, when the movement that gave rise to UCEDDs was gaining momentum, people with disabilities were often put into institutions. There was a serious lack of opportunity. “It was a different time,” said Derek Nord, who directs the Institute on Disability and Community, Indiana’s UCEDD. “I would say these are still challenges that we experience in our communities today, for people with intellectual or developmental disabilities… they just lack services.”

“If you think about the role of higher education universities in our states and the country overall, the role is to better understand problems that are happening, to find solutions and create new ideas that can help solve those problems. … And then on top of that is, how do we get those solutions and those ideas into the community, into practice and scaled up to most effectively serve and support this population.

“Our hope is to continue pushing systems to do a better job.”

Nevada’s UCEDD sends staff members to health fairs; people who are trained to do autism screenings. “They can rule out autism right away, or they can say, ‘I think maybe you need to come into the clinic and do a full assessment.”’

The three directors highlighted many ways their organizations have worked to improve services, including autism assessments in Nevada. Randall Owen, who directs the Nevada Center for Excellence in Developmental Disabilities, explained the need in his state. “If you want to get an assessment, and you’re up here in northern Nevada in one of the rural counties, it could be a six hour drive to come in here to Reno. … Most families don’t have that time available. We can then refer them to the resources they might need, but we can save them a full day or two of trips.”

UCEDDs play a big role in providing autism diagnoses, said Matthew Wappett, IDRPP’s executive director and the podcast host. “Here in the West, UCEDDs are sometimes some of the only places where families can go to get an autism diagnosis.”

“Upon getting assessed, you may be able to get a diagnosis that qualifies you for certain programming, such as special education,” Nord said. “It’s a core piece for a lot of people, for their support journey.”

UCEDDs can also address barriers that stand between people with disabilities and the things they want to achieve in life. “Most frequently, the barriers that I saw were environmental,” Nord said. “They were the community. They were the service system. They were professionals that have low expectations, or family members unwilling to allow their child the opportunity to work in the community. … Some of the policies that we have are oftentimes some of the biggest barriers people have to overcome. It isn’t their disability; it’s the policies, or it’s the service provision.”

He also works to make research understandable to the general population. Nord was clear: he is not the only person working on these systemic problems, but thanks to the work of many people, he is seeing change in his state. Indiana has taken an “employment-first” approach. “I think there are a lot of stories in the UCEDD network … that really are working within the broader community and advocacy and self-advocacy communities to play the roles that we can play, to keep moving ahead, to embrace folks’ rights.”

Listen to the whole podcast on  Apple Podcasts, Spotify and the DDNJ Author Insights Podcast page, or on the embedded player above.