Our Journey Toward Collaboration
Senior Program Manager, CYSHCN
Program Analyst, CYSHCN
MCH Technical Assistance, Association of University Centers on Disabilities (AUCD)
Associate Director, Child and Adolescent Health
It is no surprise to PULSE readers that children and youth with autism spectrum disorder and other developmental disabilities (ASD/DD) require a coordinated, comprehensive system of care to meet their diverse – and often complex – needs. It is also probably no surprise that ensuring access to quality services that promote optimal outcomes across the lifespan requires coordination among many stakeholders at the national, state, and local levels.
The Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act, originally passed in 2006 as the "Combating Autism Act" and reauthorized under its current name in 2014, supports significant efforts to improve systems of care for children and youth with ASD/DD. The CARES Network represents the grantees funded by this legislation through the Maternal and Child Health Bureau; the grantees' funded work includes investments in research, workforce training, and state systems change efforts. For many years, AMCHP's State Public Health Autism Resource Center (SPHARC) and AUCD's Interdisciplinary Technical Assistance Center on Autism and Developmental Disabilities (ITAC) have not only supported the state systems and training grantees respectively, but also developed a strong partnership to support the entire CARES Network and encourage collaboration among grantees.
Our organizations also work closely with others in the autism community. Although many of these collaborations have historically focused on policy (perhaps by virtue of being located in or near Washington, D.C.), there was an opportunity to establish more formal linkages among those working on complementary programming initiatives. This led to SPHARC and ITAC brainstorming and eventually forming the new Autism CARES Partnership Network, which aims to establish a system to support the CARES Network grantees. This Partnership Network will bring together many national organizations (self-advocacy groups, family groups, professional associations, etc.) that are working on autism programs to: (1) share information in a coordinated way, (2) identify opportunities for collaboration, and (3) build a unified constituency that can more capably work toward the aims of the Autism CARES Act.
By bringing together organizations that all care deeply about improving outcomes for individuals with autism and their families across the lifespan, this Partnership Network hopes to be an example of collaboration and alignment at many different levels. The purpose of this article is not only to direct your attention to this new Network, but also to provide a practical example of how these types of partnerships can begin. We hope the following list of steps can be helpful to those aiming to begin or strengthen an existing collaboration.
Step 1. "Who do we know?" Key staff from AMCHP and AUCD put their heads together and thought about the ways in which we were connected to organizations from the broader autism community. Once we had an initial list of organizations, we determined the best point of contact for each and followed up with those individuals about who else we needed to invite. This is a step we plan on revisiting regularly to incorporate as many necessary perspectives as possible.
Step 2. "What is the ask?" We knew our idea was great, but we had to think critically about how to frame it with national partners in a way that conveyed mutual benefit for them and their constituencies. For example, we wanted to show how a functioning network could: (1) reduce duplication of work, (2) increase alignment of resources, and (3) provide insight on resources in development or share needs that the Partnership Network can address in a collaborative manner.
Step 3. "Divide and Conquer." AMCHP and AUCD staff developed an invitation email and used their relationships with invited organizations to generate interest and an initial commitment to learning more about the Partnership Network.
Step 4. Convene in-person or virtually. A few partners joined us for a brief informational session at the Autism CARES grantee meeting in July. We hosted a webinar with similar content in August for partners who were not able to attend. On both occasions, leaders from participating organizations expressed a desire to learn more about everyone's missions, initiatives, etc. In response, AMCHP and AUCD are creating a Partnership Network directory; the hope is that this document can begin to promote micro-level collaborations and a foundation for more targeted collective efforts.
Step 5. Create a plan for ongoing engagement within the Partnership Network. We're still learning about what the participating organizations hope to gain from closer connections with each other and CARES grantees, but we hope to leverage the expertise and motivation in order to address areas of significant need.
For more information about SPHARC, visit www.amchp.org/spharc or contact Paige Bussanich at firstname.lastname@example.org. For more information about ITAC and AUCD, visit http://www.aucd.org/itac or contact Ben Kaufman at email@example.com.