ASD Advocacy in Delaware: A success story

Other funding for developing new programs has come from federal agencies and individual donors. Beginning in 2016, the University of Delaware has received almost $2 million in new federal grants to launch new programs of ASD training; a two year $840,000 state implementation grant from the Health Services and Resources Administration (HRSA) beginning to improve ASD identification and service initiation, and a grant for interdisciplinary training and research on disabilities from the Maternal Child Health Bureau now bringing in more than $500,000 each year.  In this same period, Nemours has received more than $4 million to support new ASD research, and assembled another $20 million to build the new Swank ASD center.

For everyone concerned about ASD in Delaware, these developments are tremendously exciting.  After all, each of these new programs was funded based on claims that they will result in important benefits to people with ASD. The total amount of funds raised was especially exciting given the potential synergy created through the overlap in these investments in important areas like early identification. But the total amount of funds raised also makes it even more important to consider the ROI, especially in anticipation of future advocacy.

And my role? I was one of many contributing to the development of the legislation underpinning the ICA and DNEA, as part of a legislative task force that met multiple times between September 2014 and March 2015. This led to a final report to Delaware legislators laying the groundwork for both SB93 and HB292. As an invited  expert, I provided a systematic review of other related statewide initiatives that included many recommendations incorporated into the legislation eventually adopted, drafted the organizational structure of what would become the ICA and DNEA, drew on my 2010 HRSA grant to define a central role for ASD navigators, and recommended significant revisions to the legislation itself that integrated the most  innovative elements from other states.

I originally provided these services on a pro bono basis because I was very excited by SB93's potential to demonstrate the synergy when services, training, research, and policy are coordinated across sectors and agencies.  This is a key strategy for improving outcomes that I outlined in my 2013 review of state and national ASD programs.  I have also come to recognize that, for a variety of reasons, these ideas are unlikely to be tested through the kinds of grants currently on offer. Given the potential for direct and immediate impact on state and regional services, it just made sense to explore support for such initiatives through the state legislature. And that is why I continue to offer consultation and guidance on a pro bono basis to SB93 and other initiatives with similar potential to demonstrate real impacts on a meaningful scale.