Stories about ASD

The Mystery of SB93

ASD Roadmap

ASD Advocacy in Delaware: A success story

The amounts raised bring increased expectations 0f impact

September 19, 2019


Some background. By any measure, ASD advocacy in Delaware has been remarkably productive in generating new funding. Like SB93, some of this funding has come through state legislation. In 2012, Delaware became the 32nd state to pass ASD insurance legislation (SB22), dramatically increasing the range of intervention services that can be covered by eligible policies (up to $36,000 annually per child).  Just last year, the state passed HB292 to support coaches who will train educators and parents in research-based practices.  By tying funding to student enrollment, HB292 increases access to critical services statewide, and is projected to draw on an additional $450,000 annually from state and local sources by 2021.

Passed into law in 2016, SB93 created a new statewide coordinating committee (the Interagency Committee on ASD or ICA) to help coordinate services and track progress towards important outcomes for people with ASD across the state.  This legislation also created the training arm of the ICA - the Delaware Network for Excellence in Autism or DNEA - to coordinate training and services across health, education, and community agencies in the public and private sectors. Both the ICA and DNEA have since been operated through a contract with the University of Delaware. Navigators were also introduced to help improve access for families in the short term and gather data on specific gaps the DNEA might target in the medium to long term (Navigators are family members hired through a subcontract with the state's principal advocacy group, Autism Delaware). More information about SB93, and other initial opportunities and challenges of this new effort, were described in an earlier essay on this site.

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.



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