Lurie Center for Autism logo

Back in 2016, The WITH Foundation provided a 2-year grant to the  Lurie Center for Autism – Massachusetts General Hospital for a project to advance their Autism Care Collaborative (ACC) to address the healthcare needs of individuals with autism spectrum disorder (ASD) across the lifespan.  We’re proud to share this update.

About the Lurie Center

The Lurie Center is a multidisciplinary program designed to evaluate and treat children, adolescents, and adults with a wide variety of conditions including autism spectrum disorder and other neurodevelopmental disorders. It is the clinical arm of the Lurie Center for Autism, which also has research, advocacy, and training programs.

The Lurie Center clinical model combines evaluation and treatment by physicians, psychologists, and nurse practitioners in collaboration with other professionals involved in an individual’s care, including educational consultants, speech-language pathologists, and physical and occupational therapists.

The Project

Lurie Autism Collaborative

Man with light skin and silver hair opens his mouth for his doctor, a woman with light skin and brown hair.

With a focus on people with autism, the primary goal of this program is to ensure that these individuals, many of whom have complex medical and behavioral profile and are non-verbal, can access medical care to promote and maintain health and receive treatment of acute and chronic conditions.

The Solution

The overall goal of the ACC is to support individual caregivers in their approach to ASD patients and to sensitize Massachusetts General Hospital about the needs of these patients. The ACC developed:

  • The Autism Care Questionnaire (ACQ) to guide clinicians to understand the patient’s communication and sensory needs
  • Training videos to provide information about ASD and best practices which are now required for viewing for clinical staff
  • Protocols to move patients with ASD seamlessly through the hospital, whether in an emergency situation or a planned admission.

The appointment of a part-time patient navigator in May 2016 proved transformational. While coordinating care for nearly 200 patients, the navigator worked alongside members of ACC and a growing network of champions (84 at present) to continue to develop and refine materials, protocols, and procedures.

Some of the systems changes in just one area (MRI) include:

  • Scheduling process re-organized so that patients or caregivers speak to a champion to help plan for accommodations
  • “How to Prepare for Your MRI with Anesthesia” handout
  • Tip sheets for referring providers to outline steps for ordering and scheduling a MRI with anesthesia
  • All patients receive a pre-procedure phone call appointment with a nurse who reviews instructions on anesthesia requirements
  • A dedicated nurse on the day of the procedure oversees care from arrival to post-anesthesia recovery room for all patients scheduled for MRIs with anesthesia
  • MRI department reorganizes patient populations among their available MRI scanners to reduce delays
  • Common accommodations identified and implemented, such as a private bay and private bathroom
  • Patient Navigator provided education in the form of formal education and direct care alongside nursing staff to model strategies for communicating and facilitating patient’s participation in medical care.

Sustaining the project

MGH is pleased that they recently received support from the Ruderman Family Foundation to expand beyond autism, to serve all adults with developmental disabilities. While there may always be a need for a navigator, through this work they are building capacity by embedding education and training into their professional development infrastructure, developing processes and tools, and expanding and supporting the champions network.

Some challenges

MGH is known for its ability to provide care to medically complex patients, including individuals with IDD and co-occurring psychiatric disorders, and thus the number of patients continues to increase. Facilitating their care is time intensive – each case requires on average 18 interactions (with families, clinicians, and staff).

The Lurie Center is seeking ways to streamline this work and build capacity across clinical units with ongoing organizational efforts to improve and monitor patient progression, as well as to increase the numbers of beds. Also, MGH believes that the severe shortage of “step-down” psychiatric beds in the region means that many of these patients stay longer than medically necessary, and while at the hospital, they continue to rely on the services of the patient navigator.

Lessons learned

Building a network of “champions” across the hospital is key. At MGH, they have defined that champions are members of the clinical team (including physicians, nurses, patient care coordinators, and technicians) who:

  • Perceive challenges of caring for individuals with IDD as opportunities to improve care
  • Present a willingness to examine systems and advocate for change
  • Devote time beyond job responsibilities to directly facilitate patient care, participate in meetings, and work on process improvements
  • Integrate strategies seamlessly into their practice, rather than perceive this work as going “above and beyond”
  • Care for individuals with IDD with a spirit of flexibility and openness that indicates a core value in their beliefs about patient care.

Patient Experience

Many patients with ASD experience chronic anxiety. The patient navigator’s involvement in communicating needs with care providers or providing direct assistance during procedures and/or appointments has enabled patients to access the care they may not have otherwise.

One patient had a series of procedures — include dental services –that were done while the patient was under anesthesia.

“He had 9 cavities,”  said the young man’s mother, “Awful but not surprising, as he hasn’t had dental care in his 22 years. You will never know how much your support really means to us. We have watched in agony the fear that our kids have faced going through these procedures. It has kept us from getting medical and dental help at times because it’s so difficult for our kids.”

A common refrain among clinicians has been, “Why is this role limited to just individuals with autism? Our entire service would look so different to us and to our patients if we had people in the patient navigator role for other conditions.” MGH is excited about the expansion of this program and ability to make a positive difference in the care of people with IDD.


Learn more about this program here.