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In a little over three years, IEC has cultivated deep and authentic partnerships with people with lived experience of IDD and the healthcare community. We come together with an aim to make healthcare better and safer for people with IDD and, truly, for everyone.

In 2024, we will have the pleasure of seeing a number of our projects move from Zoom meetings, conference rooms, and draft documents to the public realm. Here are just a few of the many upcoming milestones we are excited to share with you:

• This spring, our ABC3 Coalition will release its National Roadmap for Disability Inclusive Healthcare. The Roadmap lays out the actions needed to drive culture change and preparedness for all general clinicians to better serve people with IDD.

  
  

• This summer, IDD Health Outcomes that Matter: Community-Led Standards for Improvement will be made available for public comment. Health Outcomes that Matter is a comprehensive plan for measuring, improving, and ensuring better healthcare for people with IDD, which was born from our IIDDEAL project. (Scroll down to hear from one of our participants!)

This newsletter contains even more projects IEC and our partners are pushing forward this year. We will continue to share updates on our work and our impact through our newsletters, on our social media, and on a new website that is also launching this spring.

We are so grateful for your commitment to building a better healthcare system for all, your belief in our ability to co-lead meaningful change, and your support of our mission. Thank you for being on this journey with us.

With gratitude,

IEC Featured on Jason’s Connection

Introducing IEC’s New Board Chair: Richard Gilifillan

Rick shares insights on IEC's vital mission and his personal commitment to transforming healthcare for individuals with IDD in the following Q&A:

In your view, why is the work of IEC crucial in the context of transforming healthcare for individuals with IDD? What impact do you hope IEC can achieve in this area?

IEC’s mission is directly focused on improving healthcare for individuals with IDD nationally. Our strategy is clear – to improve how we teach, deliver and pay for care. Those are the three critical drivers that will affect how people with IDD and their families experience and benefit from healthcare. Our projects are directly focused on executing that strategy. I am not aware of another organization that is so tightly focused on this mission. My hope is that IEC will help start and participate in a movement that will create much better and accessible healthcare for our population. As a result we will improve their health, life expectancy, and joy in living. Several of us at IEC have worked for many years in the movement to create a high value, more people-centered healthcare system. We are thrilled to use what we have learned to ensure that individuals with IDD and their families receive care that is centered on their needs.   

Is there a particular project IEC is working on that excites you the most? What is it, and why?

I am very interested in all of our current projects but I am most excited about the Making IDD Visible (MIDDV) initiative. Today we cannot see the IDD population in most data sets – the diagnoses are just not reliable. Better healthcare ultimately rests on an informed evidence base that is grounded in data. MIDDV is intended to allow us to find and review the experience of all individuals with IDD. It will allow us to evaluate the different approaches to care and facilitate the continuous care improvement we are after. A deep, data enabled understanding of the IDD experience is a prerequisite for success in all three of IEC’s key strategies.  

Could you share any personal experiences or connections that motivated you to get involved with IEC's mission to transform healthcare for people with IDD?

As part of my original medical practice, my partner and I served as primary care physicians for 400 adult men with IDD who worked on a dairy farm in central Massachusetts. It was just at the beginning of the deinstitutionalization era. I have never forgotten the friendly, warm, affectionate, adventuresome spirit so many of those men showed us. For me, it was the most rewarding aspect of our general primary care practice.

Meet the IEC Board of Advisors

IEC is proud to introduce our Board of Advisors. This new body includes senior advisors and former IEC board members who will provide targeted strategic advice to IEC’s leadership team. Advisors include:

• Merrill Friedman, RVP, Inclusive Policy & Advocacy, Elevance Health

• Howard Gold, President and Principal, Gold Strategic Advisors, LLC

• Joel Perlman, CPA, former EVP-CFO, Montefiore Health System

• James M. Perrin, MD, Professor of Pediatrics, Harvard Medical School and Associate Chair of Pediatrics, Massachusetts General Hospital for Children

• Cheryl Powell, MPP, Vice President, Ad Hoc LLC

Join the IDD Advocate Corps

Healthcare professionals are in a unique position to navigate the system and use their work relationships to make a positive impact. Community members bring valuable expertise from their lived experience interacting with the healthcare system to name and champion the solutions we advocate for.

We are excited that Corps members have decided to focus first on advocating for changes within hospitals and health systems.

Are you interested in joining the IDD Advocate Corps? Fill out this survey, and we will contact you.

A Dedication to Patient-Centered Care

In 2022, IEC, in collaboration with Augusta University, launched the IIDDEAL (Individuals with IDD Engaged, Aligned, and Leading): Outcomes that Matter project to enhance research, inform healthcare decisions, and improve the quality of life for individuals with IDD. This project actively collaborates with people with IDD, care partners/givers, clinicians, and other healthcare stakeholders to identify priority health outcomes. Our goal is to develop a comprehensive plan for measuring, improving, and ensuring better healthcare for people with IDD. Read what one of our project participants about how IIDDEAL has reaffirmed his dedication to patient-centered care:

practice of patient-centered care and has reminded me of my obligation to seek that personal input in healthcare decisions. I am forever grateful.”

–Michael G. Skoch MD, Chief Medical Director, Sunflower Health Plan

Stay tuned! The proposed Outcomes that Matter model is set to be open for public comment in summer 2024.

Partner Spotlight: Delta Dental Foundation of Michigan, Ohio, Indiana, and North Carolina and Delta Dental of New Jersey Foundation

Some individuals with IDD face communication barriers, especially during stressful situations like dental appointments and procedures. This can be due to the use of complex medical terms, rapid verbal exchanges without sufficient pauses for those who need extra processing time, background noise interference, and other factors. These situations not only present challenges for the individuals themselves but also for dental teams striving to provide quality care.

IEC, in partnership with the DDF and Delta Dental of New Jersey Foundation, will create practical resources for dental teams. These resources will include tools such as Plain Language signage, optional communication aids, graphic explanations of common dental procedures, conversation prompts for team members, and templates for post-visit communications – all designed to enhance dental care for individuals facing communication challenges.

“The Delta Dental of New Jersey Foundation has provided grants to organizations expanding access to dental care for those with intellectual and developmental disabilities for more than 30 years. Supporting IEC’s program is taking that support one step further,” said Lisa Gallucci, DMD, Diplomate ABDSM, and Delta Dental of New Jersey Foundation Board Chair. “As a practicing dentist, I’ve seen firsthand the challenges that those with special health care needs face, especially when it comes to the feelings of anxiety that emerge when going to the dentist and not fully understanding what is happening.”

“By committing to ensuring people with disabilities have high-quality dental care that meets their comfort level and abilities across the lifespan, we are centering the needs and experiences of the most vulnerable,” said Holli Seabury, EdD, executive director of the DDF. “And when we do that, even in the dentist's office, everyone benefits.”

Dental care is a crucial part of healthcare. But people with IDD are often at increased risk for poor dental health and its many negative clinical, social, and emotional consequences. This new partnership with the DDF and Delta Dental of New Jersey Foundation will equip dental practices to better serve their patients and improve their quality of life.

IEC Out and About

• IEC was named one of seven finalists for Arc Tank 5.0 in December, where three of our partners made a pitch before a panel of experts at Northeast Arc to grow our IDD Advocate Corps. Watch our pitch from the event.
  

• Mai Pham joined the planning committee for the Accreditation Council for Graduate Medical Education’s 2025 Summit on Medical Education in Disability Medicine, helping to guide the agenda, speakers, and participants. The goal of the Summit is to determine the education and experiences that medical residents across the country need to have to care for individuals with disabilities.
  

• Lauren Erickson, Director of Policy and Programs, joined the National Academies of Science, Engineering, and Medicine’s committee reviewing the Department of Defense’s Comprehensive Autism Care Demonstration Program.
  

• Mai presented at the National Academy of Medicine's Leadership Consortium. The meeting was about how government, payers, and healthcare organizations should incentivize community engagement. Mai shared IEC's guiding principles for authentic engagement and some of our specific strategies, and discussed specific ways to structure financial, performance, reputational, and other incentives to encourage healthcare leaders to invest in engagement.
  

• Mai joined experts across the healthcare system for an NEJM Catalyst roundtable on how to finance whole health and well-being. View the free report.
  

• Mai served as senior author for "The Role of Payment and Financing in Achieving Health Equity" within a special issue from Health Services Research on healthcare equity.