Changing How Healthcare Is Delivered

SCANS: Seamless Care Alliance of Nassau & Suffolk

A program on Long Island, NY that works to cut down on ER visits for people with IDD and make ER care better for people with IDD

Changing Healthcare to Prevent ER Trips That Aren't Needed

IEC started SCANS to test new ways of providing healthcare. The goals are to:

--Reduce ER visits
--Make ER care better
--Help people with IDD transition back to their communities more smoothly

The SCANS team is a group of self-advocates, care partners/givers, and healthcare and nonprofit organizations on Long Island. The SCANS team learned what caused many emergency department visits that did not need to happen. The team picked three areas to focus on making better.

Improvement areas include:

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

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2021

Formed the team and chose key areas to make better in ERs

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 test the Always Uniquely Me app with 1,200 users.

Phase 2 (TBD)

SCANS is looking into making a network of IDD healthcare experts who could be available for video chats anytime to help community doctors and health systems. This would let healthcare providers give safe and proper care. In the end, it could stop ER visits that don't need to happen.

Phase 3 (TBD)

SCANS will partner with ER locations to make spaces that work better for people with IDD. Using best practices, these may include:

--Special quiet areas
--Lower lighting
--Movable carts with tools to help communicate, relax, and handle sensory needs

Always Uniquely Me App

Emergencies are scary when you can't explain what you need. The Always Uniquely Me App helps people with IDD by giving doctors and first responders a quick digital summary of their health info and personal needs.

The app contains quick emergency info, detailed medical history, communication preferences, calming approaches, and more.

Steering Group Members

The SCANS Steering Group includes people with IDD, their care partners, doctors, and other healthcare leaders. This diverse group works together based on They use these perspectives to create practical solutions to improve healthcare.listening to the real-life experiences of people with IDD and healthcare professionals. They use these perspectives to create practical solutions to improve healthcare.

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 works with people who have personal experience living with IDD and healthcare professionals. Together, they create new programs focused on patients' needs to change how healthcare is taught, provided, and paid for.