have a broad range of concurrent mental and physical health conditions that need care and require all clinicians to be prepared to serve them – not just specialists. The majority with I/DD never receives Medicaid and are too often left to fend for themselves in an intimidating maze of public and private benefits and programs.
I came to two realizations. The first was that my lack of professional preparation, knowledge, faulty assumptions, and resulting bias made me rather typical of most general healthcare leaders, which implied that we need broad culture change in healthcare. The second was that, as a country, we have lots of experience from other areas of healthcare that we can draw on for solving the types of system failures I observed in I/DD care.
INSPIRED TO SEEK CHANGE
After a year of conversations with disability experts, self-advocates, and healthcare colleagues (many of whom have affected family members), I felt inspired to start a new nonprofit organization – Institute for Exceptional Care (ie-care.org) – to transform healthcare for people with I/DD so they can thrive. Despite the pandemic and the havoc of a Presidential election year, we successfully stood up IEC in late 2020.
IEC takes a structured approach to system change. We know from our broader healthcare experience that true transformation requires building a movement, both inside and outside healthcare, that shifts the cultural perspective, creates an inspiring vision, and generates demand and momentum for improvement.
Transformation also requires making change at multiple levels: on the ground with front-line service providers, affected people, and caregivers; at the industry level, with the development of tech
nical tools that multiple organizations can use for important functions like measuring the quality of care or setting appropriate budgets for services; and at the level of policymaking, to set national standards and drive key stakeholders to action through public leadership and thoughtful incentives.
We focus on three core areas in the system that need dramatic improvement – Smarter Coverage, Stronger Connections, and Better Care.
- Smarter Coverage means insurance benefits that cover all the services people with I/DD might typically need. Just as important, it includes the financing for that care (how money gets into the healthcare system, from employers, the Medicare Trust Funds, and other sources) and the payment for services (how money flows back out when service providers get compensated). It is critical that financing and payment are set at the right levels and structured in the right way in order to motivate service providers to work with affected people and caregivers in achieving their health and life goals.
- Stronger Connections means clearer processes and expectations of roles and responsibilities between clinical providers and those in other service domains, like home- and community-based services (HCBS) or education. It also means that someone other than the affected person or family can shoulder the burden of accessing and coordinating resources.
- Better Care means vastly up-skilling the key workforces – particularly general clinicians who don’t specialize in I/DD, and HCBS providers. In the case of general clinicians, we need deep
"Even with all that background, the phenomenon of I/DD was in my house, and still I had been largely unaware of how families with I/DD live until we experienced it personally – the burden of managing a fragmented network of providers, the challenge of even finding qualified ones, the sense of "forever seeking" the solutions to our problems."