Institute for Exceptional Care

What it reported doing in 2025

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: -Completed development of the Always Uniquely Me App, to help people with IDD and caregivers convey the most important information to clinical teams that dont know them well. -Held two policy summits on health outcome priorities for people with IDD. -Successfully promoted the concept of advanced primary care payment in large Medicare programs. -Provided technical assistance to the Senate for bipartisan legislation on better payment for primary care. -Grew the IDD Advocate Corps to 90 members and formed committees with charters, goals, and training. -Launched an online collaboration portal for the IDD Advocate Corps. Began a story bank. -Created Discourse, a continuing clinical education course on how clinicians can support people with communication disabilities. -Created four printable tools for dental practices to improve communication, accessibility, and patient preparation for dental visits. -Developed an advocacy strategy for the Society of Developmental and Behavioral Pediatrics. -Presented IECs work and approach at numerous conferences and to diverse audiences of clinicians, policy leaders, disability groups, and insurers.

Financial Efficiency

• Mission deployment rate: 88.4%; rating input score 88
• Program expense ratio: 66.2%; rating input score 66
• Fundraising efficiency: $6.25 raised per $1 spent on fundraising; rating input score 21; 21st percentile among comparable filings

Transparency & Controls

• Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
• Pay-setting controls: Limited
• Foreign activity oversight: Limited
• Grant itemization coverage: Limited
• Major donor itemization: Yes; rating input score 100
• Related-party transparency: Limited

Accountability

• Independent voting board: 93.3%; rating input score 93; 27th percentile among comparable filings
• Governance controls: 8 of 8 controls in place; rating input score 100
  • Conflict-of-interest policy: Pass
  • Whistleblower policy: Pass
  • Document-retention policy: Pass
  • CEO compensation review process: Pass
  • Other executive compensation review process: NotApplicable
  • Form 990 shared with the board: Pass
  • Board meeting minutes documented: Pass
  • Audit committee oversight: Pass
  • Independent financial-statement audit: Pass

Sustainability

• Operating margin: -33.2%; rating input score 3; 3rd percentile among comparable filings
• Total-asset coverage ratio: 1.19; rating input score 48; 48th percentile among comparable filings
• Liabilities to assets ratio: 0.09; rating input score 35; 35th percentile among comparable filings
• Officer compensation ratio: 21.7%; rating input score 14; 14th percentile among comparable filings

Growth

• Program expense growth: 26.1% per year; rating input score 100; 86th percentile among comparable filings
• Revenue growth: 17.8% per year; rating input score 100; 79th percentile among comparable filings
• Asset growth: 26.6% per year; rating input score 100; 87th percentile among comparable filings