Changing How Healthcare Is Delivered
SCANS: Seamless Care Alliance of Nassau & Suffolk
A community-based pilot program on Long Island, New York, that aims to reduce emergency department visits and improve emergency care for people with intellectual and/or developmental disabilities (IDD).
Changing How Healthcare is Delivered to Avoid Unnecessary Emergency Visits
IEC launched the Seamless Care Alliance for Nassau and Suffolk (SCANS) to pilot new healthcare delivery processes aimed at reducing emergency department (ED) visits, improving ED care, and easing transitions back to the community for people with IDD.
As a multi-stakeholder coalition of self-advocates, care partners/givers, and healthcare and community-based organizations on Long Island, the SCANS team identified the root causes of avoidable ED visits and poor outcomes. They identified three priority areas for improvement and are developing solutions to test with local care facilities and organizations.
Improvement areas include:
- Phase 1: Communication among people with IDD and clinicians (especially first responders)
- Phase 2: Access to expertise in treating people with IDD
- Phase 3: Care environments within emergency facilities
- 2x: how much more likely it is that a person with IDD visited the ED in the past year than a person without IDD
- 2.7x: how much more likely a person with IDD is to experience harm when admitted to the hospital compared to a person without IDD
- 12x: how much more an ED visit costs than visiting a physician’s office
Why This Matters
People with IDD have higher rates of chronic conditions, suicide ideation/attempts, and preventable accidents, leading to more interactions with the healthcare system. They often end up in hospital emergency departments (ED) as a last resort – people with IDD are twice as likely to have visited the ED in the past year than a person without IDD.
Many families and people with IDD say they dread and fear the ED. What is already a high-stress experience for many of us may be compounded for many people with IDD – a loud, overstimulating environment with personnel who often lack specialized knowledge and understanding, which can worsen or hasten the crises patients are experiencing. As a result, many people with IDD experience extended ED stays, unnecessary hospitalizations, chemical or physical restraints, avoidable stress for themselves and family, and unnecessary – and even harmful – tests and treatments.
SCANS Highlights
Swipe left/right to navigate
2021
Formed coalition and determined priority areas for improvement in emergency departments (EDs).
2022-23
Designed and built the Always Uniquely Me App, a digital snapshot of a person with IDD’s healthcare needs.
Fall 2024
With partnership from Northwell Health, we will pilot the Always Uniquely Me app with 1,200 users.
Phase 2 (TBD)
SCANS is exploring the creation of a network of clinical IDD experts who can be available for on-demand, virtual consultations with community providers and health systems. This will enable healthcare providers to give safe and appropriate care and, ultimately, prevent avoidable ED visits.
Phase 3 (TBD)
SCANS will work with partner ED facilities to create care environments that better meet the needs of people with IDD. Drawing on best practices, these projects may include dedicated quiet spaces, dimmer lights, and mobile carts containing communication supports, calming tools, and sensory aids.
Always Uniquely Me App
Emergencies can be terrifying when you can’t communicate. The Always Uniquely Me App empowers people with IDD by providing a comprehensive digital snapshot of their healthcare information and personal needs to share with clinicians and first responders in any situation.
The app contains quick emergency info, detailed medical history, communication preferences, calming approaches, and more.
Coalition Steering Group Members
The SCANS Steering Group is a diverse coalition that includes people with IDD, care partners/caregivers, clinicians, and other healthcare leaders. The Steering Group operates collaboratively, based on the principles of Authentic Community Engagement – learning from the lived experience of people from IDD and the perspectives of healthcare professionals and creating commonsense solutions.
Click on each to expand
Project Leads
- May-Lynn Andresen, Director of Community Partnerships, IEC
- Hope Glassberg and Alison Gold, Decipher Health Strategies
Steering Group Members
- William Apterbach, Vice Chair, Emergency Medicine, Northwell Health – South Shore University Hospital
- Robert Budd, CEO, Family Residences and Essential Enterprises, Inc. (FREE)
- Rob Ciatto, Executive Director, Adults and Children with Learning Disabilities (ACLD)
- Mary Ellen Diver, CEO, Advantage Care Health Centers
- Barry Donowitz, Associate Executive Director, AHRC Nassau
- Leslie Feinberg, Care Partner
- Kristie Golden, Associate Director of Operations, Neuroscience, Stony Brook Medicine
- Saundra Gumerove, Care Partner
- Matthew Harris, Medical Director, Emergency Services, Northwell Health – Cohen Children’s Hospital
- Caroline Heindrichs, Health Equity Director, Blue Cross Blue Shield
- Carolyn Leary, SVP of Care Management, ACA/NY
- Coleen Mackin, Self-Advocate
- Susan McCarthy, Director of Social Work, Stony Brook Medicine
- Barbara McNamara, Executive Director, Support My Independent Life (SMILE)
- Steven Merahn, Medical Director, Care Design NY/Partners Health Plan
- Anne Marie Phillips, Director of Quality Assurance, Charles Evans Center
- Susan Platkin, Care Partner
- Jacqueline Prince, AVP, Medicaid Product Initiatives, EmblemHealth
- Courtney Skivington-Wolf, COO, Care Design NY/Partners Health Plan
- Ralph Warren, Self-Advocate
Steering Group Organizations
- Care Coordination Organizations (CCO)
- ACA/NY
- Care Design, NY (CDNY)
- Disability Service Organizations (DSO)
- ACLD
- AHRC Nassau
- FREE (Family Residences and Essential Enterprises, Inc.)
- Federally Qualified Health Centers (FQHC)
- Advantage Care
- Charles Evans Health Center
- Long Island Select Healthcare (LISH)
- Hospitals/Health Systems
- Northwell Health Cohen Children’s Hospital
- Northwell Health, South Shore University Hospital Emergency Department
- Stonybrook Medicine
- Support Broker Organization
- SMILE (Support My Independent Life)
IEC is grateful for the following funders, whose support makes SCANS possible:
Making Healthcare Better and Safer for People with IDD
IEC partners with people with lived experience of IDD and healthcare professionals to change the way care is taught, delivered, and paid for by creating new programs that center patients.