Autism Case Study

Summary of Issue

The leadership of the State Maternal and Child Health (MCH) and Children with Special Health Care Needs (CSHCN) Title V programs seek to establish the credibility of the CSHCN agency among key stakeholders while executing a federal autism grant to create a pilot system that strengthens care coordination services for children on the autism spectrum. A severe budget shortfall poses a potential threat to forging a relationship among the Title V leadership and other stakeholders within the Autism Coordinating Council. An initial meeting exposed a strain on the relationship between Title V leadership and stakeholders. The government leadership must actively participate in bidirectional communication with those stakeholders who influence decisions made at the community level in order to demonstrate shared leadership, and in turn, incentivize action being taken to achieve community health objectives(1). Pete Carver, the CSHCN Director, must soon submit a report to his supervisor and the Governor on the progress of the council. The following recommendations will aid in reassuring all stakeholders involved that this pilot program is collaborative: 1) implement one-on-one meetings among stakeholders and Title V leadership with open communication to build trust and forge honest relationships, 2) create a Family Involvement Coordinator position that satisfies the needs of key participants representing the autism community while remaining within certain limitations including the funding budget, and 3) incorporate treatment services within the current system provided through Title V that addresses the needs of children with autism spectrum disorder (ASD). These efforts will cultivate a collaborative process among all participants to meet the needs of the autism community and the goals of the grant.

Stated Problem

The first meeting of the Autism Coordinating Council left group members feeling highly frustrated by the lack of consensus on outreach methods to recruit families, involve practitioners, and development of a pilot system of care for children with autism to incorporate broader public health goals. The stakeholders aren’t fully considering the current budget limitations faced by the Division of Family Health as leadership struggles to be effective in meeting the needs of the government and the grassroots community groups.

Recommendations

Pete Carver needs to develop improved methods of communicating the responsibilities of the CSHCN program which will lead to a stronger relationship with the autism community and greater support of implementing the pilot program. During the initial Autism Coordinating Council meeting, it was found that key stakeholders are not knowledgeable of what the CSHCN program does or how they fit into the implementation of the grant. He should:

Propose to have strategic one-on-one meetings, prior to another large group meeting, with stakeholders in which transparent communication is provided to bridge the gap in trust among the government and the autism community. In particular, Pete must meet with the Governor’s appointee, Libby Cockrell, to educate her on the objectives of CSHCN and Family Voices. This separate meeting will give Pete an opportunity to provide more information to Libby of how the program aims to reconcile the needs of the autism community, and advocacy for developmental disabilities, as well as leverage the Governor’s powerful support for the grant. Since Libby would like to see a separate system of care for autistic children, which opposes the pressure Pete is receiving from the government in not creating a separate system, another one-on-one should occur among Libby, Pete and the Governor’s office to come to a consensus on the matter.

Create a logic model for the pilot program that outlines the goals of the grant which will aid in clarifying stakeholder’s responsibilities, and assign specific roles to those stakeholders creating a logic model. The logic model will allow leadership to take on roles and responsibilities for tasks and deliverables to cultivate a collaborative consensus among the various participants(2). Prioritizing the creation of a logic model will help foster collaboration and have a positive impact on the council’s working relationship in the future. The transparency of laying out the inputs (grant funding, stakeholders and government, education materials) activities (education workshops of Title V programs and treatment services that practitioners can administer) outputs (number of children treated after autism diagnosis, quality of workshops) and expected outcomes (changes in learning, action and conditions of children with ASD, families, and the autism community) can aid in identifying differences in perceptions of the program and those within the autism community.

Support the proposition of creating a Family Involvement Coordinator position to increase outreach efforts for family recruitment and practitioner involvement. With a looming 25% budget cut, Pete must be mindful of available funding and how it can be allocated while successfully meeting the needs of participants. Nancy’s strong connections to the autism community and the CSHCN program make her a viable person to appoint for a part-time position and take on the responsibility. She could also work with Molly Stapleton, of the Autism Society, as another liaison in gathering parental support and educating families on CSHCN. Pete may be able to reach an agreement with Nancy on paying her given the reality of the budget through a one-on-one meeting.

The Title V program currently allocates funds for diagnostic evaluation but it does not incorporate treatment services for children with ASD. Though the autism community wants to create a separate system unique to what their children need, the government does not want this to be created outside of the Title V program. To join the opposing views as one, Pete should:

Allocate some of the funding for treatment services to be included within the current diagnostic evaluation system. Parents of children with ASD want to see services that address the diagnosis once detected. Different types of treatment that can be used include behavior and communication approaches, dietary approaches, medication, complementary and alternative medicine(3). Applied Behavior Analysis falls under the behavior and communication approaches treatment(3) and is one that the American Academy of Pediatrics (AAP) reports as helpful to children with ASD. Compelled to explore the possibility of expanding fund allocation, Pete can leverage support in providing treatment under the program from practitioners who are members of the AAP through the chapter leader, Nina Prince. After educating Libby on the CSHCN program, a meeting also needs to take place between her, Pete, and Nina to include a clarifying conversation about the goals of public health and the importance of protection provided to children and those around them via vaccination.

Conclusion

The overarching mission should focus on gaining the trust of council members in order to effectively implement the pilot autism program by reassuring them that this is a collaborative process and that the needs of the autism community are a priority. The first meeting brought to light gaps in knowledge about the programs involved, and goals of stakeholders for the pilot, but opened the door to implement recommendations for cultivating transparency and trust, make room for a critical position, and optimize existing resources to bring coalitions together and establish a cohesive council.

References

1. Novick & Morrow’s Public Health Administration: Principles Third ed.: Jones & Bartlett Learning; 2014.

2. Garrett K, Kaplan, Sue. The use of logic models by community-based initiatives. Evaluation and Program Planning 2005;28:167-72.

3. Autism Spectrum Disorder (ASD) Treatment Centers for Disease Control and Prevention; 2015. (https://www.cdc.gov/ncbddd/autism/treatment.html). (Accessed November 2017).