culture change addressing bias and ableism to build empathy and commitment, as well as technical training in basic competencies for serving people with I/DD. For HCBS, we need higher salaries and formal paths for professional advancement. Public and private investment in supportive infrastructure, such as data systems, would also go a long way to sustaining this much needed, yet highly strained group of providers whose ranks have been depleted even further by the COVID-19 pandemic. IEC sponsors or conducts projects in these three areas. We provide thought leadership through commentaries and presentations. We convene key stakeholders to help them collaborate on solutions. We conduct policy analyses and research. And we build technical tools –to measure quality of services and to improve the identification of people with I/DD in healthcare data – which are necessary building blocks for improving coverage, financing/payment, coordination, and care. You can read more about and track our work here (ie-care.org/iec-projects-overview).

ADDRESSING THE TRUST GAP

Perhaps the most important element of our DNA at IEC is that we try to serve as a bridge between the disability community and general healthcare business decisionmakers. Let's admit that there can be deep mistrust between these two communities, for many understandable historical reasons. We approach problems with different framings, use very different vocabularies, and often don't understand each other's realities.

As healthcare leaders with decades of policy and operational street credibility, as well as family caregivers with lived experience, IEC has the rare opportunity to maintain trust in both communities, to help translate their priorities and concerns, and build safe, constructive spaces for them to solve problems together. I'm a first-generation immigrant who had to "bridge" between my parents' traditional Vietnamese expectations and American culture; a physician who partnered mostly with social scientists during the decade of my research career; and a researcher who became a policymaker and had to bridge between political leaders (who needed to make fast decisions) and government analysts (who wanted them to slow down and wait for better data.)

All those experiences ingrained in me a deep sense of empathy for the "other," and the optimism that opening oneself to honest, uncomfortable negotiations with people you disagree with can lead to surprisingly satisfying solutions. The most energizing moments for me in any given week come when we meet with disability and healthcare stakeholders, and I see a new spark of mutual understanding, knowing we helped make it happen.

It is in that spirit that IEC surrounds itself with a diverse set of advisers (ie-care.org/about) – self-advocates, disability experts, clinicians, researchers, policy experts, and healthcare business leaders. Advocates and disability experts helped us craft our Values Framework, a set of commitments to hold ourselves accountable for core disability values, such as ensuring that affected people and/or caregivers participate in every one of our projects and are compensated for doing so.

A STEEP AND AMBITIOUS - BUT HOPEFUL LEARNING CURVE

Most new nonprofits fail. It's hard to raise funds and gain traction, especially with so much competition from other worthy causes. But something about our message and our approach resonated

with both the disability and healthcare communities. The National Academies of Sciences, Engineering, and Medicine committed to holding a public workshop (nationalacademies.org/our-work/optimizing-care- systems-for-people-with-intellectual-and-developmental-disabilities-a-workshop) with us even before we incorporated IEC. Prestigious academic health centers like Duke University, Montefiore Medical Center, and Massachusetts General Hospital are eager to partner with us. The Arc, one of the largest national disability organizations, is giving us administrative support and mentoring. Disability experts patiently tutor us on history and the nuances of disability debates – hugely important, since we began this work as health system experts rather than experts in disability policy and are on a steep learning curve regarding the latter. Self-advocates contribute their life experiences, stories, and time, to make our work better and keep us honest.

IEC is playing the long game. As a veteran of national health system transformation efforts in both public and private sectors, I'm clear-eyed about how hard it is to make broad change, and I know sustaining it will take many years. I also know it's possible, but only if we start.

WHAT IMPROVES I/DD CARE IMPROVES EVERYONE'S CARE

I believe one key driver success for this movement will be the degree to which we can convince key stakeholders of this – not that the I/DD population is special and needs unique supports, but rather that building a healthcare system that serves the I/DD population well will result in a system that serves everyone better. Everyone would benefit if medical practices were more accommodating of different communication needs and styles. Everyone would benefit from more deliberate coordination of services across providers. Everyone would benefit from clinicians who work to tailor care to a given person's goals, rather than take a onesize-fits-all approach. Everyone would benefit from better financing of home- and community-based supports, because we all will be disabled at some point in our lives. In this "universalism" framing, I/DD is the tip of the spear. By putting the needs of people with I/DD front and center, we can make the healthcare system more effective and humane for all of us.

I try to keep Alexander updated and involved with IEC to the degree that it's possible to have a 19-year-old interested in his mother's work. He helped with the design of our logo and color scheme. He's a mathematician and keeps an eye on the prime numbers we use for suggested donation amounts on our website. And he's no slouch with health policy concepts, like the evils of "fee-for-service" payments, so he knows where at least some of our discussions are headed. I think of IEC as part of my legacy to him, but in reality, it was he who taught me what I needed to know to make it what it is and could be.

ABOUT THE AUTHOR:

Hoangmai Pham. MD, MPH, is a general internist and President of Institute for Exceptional Care, a non-profit organization committed to transforming healthcare for people with intellectual and/or developmental disabilities. She was previously Vice President at Anthem, responsible for national care transformation initiatives, and Chief Innovation Officer at the Centers for Medicare & Medicaid Services in the Obama Administration. Mai is mother to two young men, and lives and works in Washington, DC.