Autism New Jersey Continues Work to Improve Health Outcomes

May 20, 2024

There has been so much going on at Autism New Jersey, and one thing that remains at the forefront of our efforts is our Advancing Healthcare Initiative.

In July 2023, we launched a first-of-its-kind Healthcare Consortium designed to leverage the knowledge, expertise, and resources of leaders in autism service provision and healthcare. This engaged group has been meeting every other month to collaborate, identify best-practices, and accelerate efforts statewide. As we near our one-year anniversary, the Consortium is ready to provide an update on its first two projects.

First, the group is currently drafting a formal guidance document that will allow healthcare settings to assess their adoption of autism-friendly practices. It will also provide healthcare settings with examples, definitions, and resources to help them adopt and fully implement the included strategies so they can more safely, effectively, and compassionately care for autistic patients. Look for more information on the finished product in the coming months.

In addition to this large-scale endeavor, members of the Consortium are also focusing on improving the communication between direct care professionals (DSPs) and healthcare providers during medical appointments for patients with autism and IDD or minimal verbal skills who live in group homes or other out-of-home treatment settings. DSPs often attend medical appointments with these patients, and the information they share with healthcare providers is vital to effectively managing the patient’s health. DSPs need to understand what is important to share and how to share it, and healthcare providers need to be aware of and respect the role of the DSP in these appointments. Improved communication between DSPs and healthcare providers during medical appointments can positively impact the quality of delivered healthcare and thus, health outcomes.

In addition to the consortium’s work, the Advancing Healthcare Initiative seeks to broaden and elevate the conversation on the health disparity experienced by New Jerseyans with autism. Using our Power of Connection, we are spreading awareness of the issue and discussing viable and sustainable ways to improve healthcare access and health outcomes. Recently, our Director of Clinical Initiatives, Lauren Frederick, M.A., BCBA, has been spending a great deal of time presenting information on autism and autism-friendly practices to groups of healthcare professionals:

  • This spring, Lauren collaborated with several expert psychiatric advanced nurse practitioners to present “The Power of Understanding and Leading Holistic Care for Individuals Diagnosed with Autism Spectrum Disorder” at the International Society of Psychiatric-Mental Health Nurses’ Annual Conference. (pictured above)
  • She was also honored to be asked to speak at the annual conference of New Jersey’s Society of Radiologic Technologists. Attendees spent their morning learning more about autism, how the characteristics of autism can impact medical interactions, and ways to better care for autistic patients.
  • Finally, Lauren ended Autism Acceptance Month by providing a webinar for more than 200 of New Jersey’s Emergency Medical Services personnel. Hosted by the Department of Health’s Office of Emergency Medical Services, Autism New Jersey was pleased to provide continuing education to EMTs and paramedics on safe, effective, and compassionate emergent care for individuals with autism. Interdisciplinary collaboration is key to improving medical care for patients with autism, and our presence at medical conferences is one great example of how we are promoting that collaboration.

There is much more to be done, however. We continue to seek the lived experiences of autistic individuals and caregivers who support a loved one with autism through our Healthcare Experiences Survey. The information we gather and the stories we hear through this continue to be shared with the Consortium and will help guide our priorities and efforts.

We have also recently started to focus on increasing the number of healthcare providers in our referral database who accept and effectively care for patients with autism and behavioral challenges. This is a multi-phase plan that involves outreach, education, and support to healthcare professionals. To help us kick off our outreach, we want to hear from all of you. Who are the doctors and other healthcare professionals with whom you’ve had great experiences? Are there certain specialty practices or urgent care centers that are your “go-tos” because of the excellent care they provide? Please reach out and share their names; we want to connect with them and include them in our referral database. We want every New Jerseyan with autism to have access to autism-friendly healthcare providers. Please fill out this form with their names and information.

Finally, our Medical Equipment Lending Library, available to any clinically- qualified organization member launched a few months ago. Our first borrowers have received their medical equipment, and we are looking forward to updates on the impact of this program. As Erin McGill, RN BSN CSN, School Nurse at the EPIC School told us, she anticipates that it will “significantly help enhance our essential medical programs.”

Our Advancing Healthcare Initiative continues to serve as the collective voice in improving the health and wellbeing of individuals with autism. Just as the barriers to healthcare and the causes of health disparities are complex and multifaceted, so will the solutions be. Autism New Jersey is dedicated to collaborating with families, professionals, organizations, and governmental agencies to promote best-practices in healthcare for autistic patients.