Institute for Exceptional Care

Thought Leadership: Institute for Exceptional Care (IEC) chaired the Planning Committee for a public workshop of the National Academy of Science, Engineering, and Medicine, on the policy, clinical, and business actions needed to build an integrated system of care for people with intellectual and/or developmental disabilities (I/DD). The workshop featured over 30 stakeholders and experts in the field, addressing the critical topics of better coordination of support services across clinical and home- and community-based sectors, improving the cultural and technical preparedness of the general clinical workforce to care for people with I/DD, and improving financing and payment to sustain effective care models. IEC also:Led the design of all disability-related discussions at a national health equity conference with over 9,000 attendees from across the fields of clinical care and health policy. Produced an analysis of federal policy options to improve mental health outcomes for people with I/DD.Co-chaired other workshops and publications from the National Academy of Medicine on policy and programmatic options for improving the health of communities, particularly for vulnerable populations including people with I/DD. Research and Analysis:IEC sponsored three critical analyses to support the design of better care systems for people with I/DD: (1) Case studies of financing and payment innovations across the United States; (2) reviews of the strengths and weaknesses of current approaches to coordination between clinical and non-clinical service sectors, identification of 13 key coordination functions, and the design of an alternative framework for coordination that specifies which stakeholders should be responsible for which functions; and (3) review of current methods for risk stratification and producing a conceptual framework for predicting the types and levels of clinical and non-clinical services that a person with I/DD will need, in order to support better budgeting, financing, and payment. Education:IEC sponsored a webinar for a community of students, alumni, and staff at an independent residential school for children with I/DD, on the elements of neurodiverse friendly healthcare. The webinar addressed important physical accommodations in clinical practices, the potential and challenges of telehealth, and suggestions for how people with I/DD and caregivers can advocate for better care.Additional Info:IEC provided thought leadership through multiple speaking engagements to state and federal government agencies, academic institutions, healthcare conferences, webinars, and blogs. Creation of the IDD Advocate Corps, a grass-roots advocacy network of passionate health professionals partnering with community members with lived experience of IDD. The Corps began planning its approach to governance, training, research and education, and making change in specific sectors of healthcare, beginning with healthcare delivery organizations. Additional Info:-Completed first phase of IIDDEAL project to define what health outcomes matter most to people with IDD-Convened the IIDDEAL Consensus Working Group in-person to develop national goals for improving health outcomes that matter-Held a Policy Summit on IIDDEAL findings-Completed first phase of technical design of the Always Uniquely Me app-Completed drafting the National Roadmap for Disability Inclusive Healthcare