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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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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.

A photo of a person holding a cell phone in their right hand to open an app

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

  • May-Lynn Andresen, Director of Community Partnerships, IEC
  • Hope Glassberg and Alison Gold, Decipher Health Strategies
  • 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
  • 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:

The Fay J. Lindner Foundation logo in blue

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.

We’re hiring a Communications Manager! Learn more and apply by 7/24.