Form 990 for tax year 2024

Totals

Total revenue

$3,122,794

Total expenses

$1,902,103

Contributions and grants received

$3,019,774

Grants paid

$0

Program service revenue

$102,750

Investment income

$270

Other revenue

$0

Total assets, end of year

$2,451,731

Total liabilities, end of year

$433,486

Net assets or fund balances, end of year

$2,018,245

Program services expenses (Part IX)

$1,144,330

Management and general expenses

$484,312

Fundraising expenses

$273,461

Program service expenses (Part III)

$1,144,330

Program services were 60.2% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Mission and programs · 2024

• 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.

  Expenses $1,144,330 · Revenue $102,750

As filed on the 2024 return.

Listed in Part VII

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.

Schedule J

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

No itemized grants to organizations on this return.

Provenance

Return type

form_990

Tax year

2024

Filed

21 October 2025

IRS schema version

2024v5.2

Source object

202532979349301548

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