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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:

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 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.

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

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

  • 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 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.