2025-10-21T09:24:59-04:00 2024-12-31 474306215 Mullins PC 7625 Wisconsin Avenue Bethesda MD 20814 990 2024-01-01 851278444 Institute for Exceptional Care % Hoangmai Pham INST 2028439260 1717 K Street NW STE 900 Washington DC 20006 HOANGMAI PHAM President 2028439260 2025-10-21 true true JOHN MULLINS P01429307 2027706371 2025-10-21 2024 2025-03-06 01:10:19Z Hoangmai Pham 1717 K Street NW Ste 900 Washington DC 20006 3122794 false X www.ie-care.org X 2020 DC Transforming healthcare for people with intellectual and developmental disabilities, so they can thrive. 15 14 10 21 0 0 916996 3019774 325500 102750 7967 270 0 1250463 3122794 0 0 1081838 1244698 0 273461 752581 657405 1834419 1902103 -583956 1220691 1057300 2451731 262660 433486 794640 2018245 Transforming healthcare for people with intellectual and developmental disabilities, so they can thrive. false false 1144330 102750 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. 1144330 true true false false false false false false false false false false false false false true true false false false false false false false false false false false false true false false false false false false false false false false false false false false false false false true 25 0 true 10 true false false false false false false false false false false false false X 15 14 false false false false false false false true true false false true true true false true true true true false CA CT DC FL IL MA MD NJ NV VA X X Institute for Exceptional Care 2028439260 1717 K Street NW Suite 900 Washington DC 20006 Hoangmai Pham President 20.00 0.00 X X 227083 0 13500 Lauren Erickson Policy Director 40.00 0.00 X 189469 0 11556 May-Lynn Andersen Director of Partnerships 40.00 0.00 X 153305 0 20545 John Stowe Chief Operating Officer 30.00 0.00 X 105816 0 8873 Bernard Rosof Emeritus Chair 2.00 0.00 X X 0 0 0 Nell Buhlman Director 1.00 0.00 X 0 0 0 Julia Bascom Director 1.00 0.00 X 0 0 0 Cuong Do Director 1.00 0.00 X 0 0 0 Chester Finn Director 1.00 0.00 X 0 0 0 Rima Cohen Nominating Chair 1.00 0.00 X 0 0 0 Bob Galvin Vice Chair 1.00 0.00 X X 0 0 0 Morenike Giwa Onaiwu Education Co-Chair 1.00 0.00 X 0 0 0 Richard Gilfillan Chair 2.00 0.00 X X 0 0 0 Margaret Nygren Finance Chair 1.00 0.00 X 0 0 0 Cathy Farmer Director 1.00 0.00 X 0 0 0 Dena Gassner Education Co-Chair 1.00 0.00 X 0 0 0 Staci Alexander Director 1.00 0.00 X 0 0 0 Matthew Holder Director 1.00 0.00 X 0 0 0 675673 0 54474 4 false true false 3019774 3019774 Program Service Revenue 900099 92750 92750 Membership Dues 900099 10000 10000 102750 270 270 0 3122794 102750 0 270 X 227083 129983 61266 35834 828984 474517 223654 130813 105373 58974 35171 11228 83258 47812 22456 12990 16400 16400 47530 47530 512725 426700 16293 69732 27916 27916 309 284 25 8862 2445 5467 950 10484 10475 9 State Registrations 4821 4821 Dues and Subscriptions 28358 3899 12579 11880 1902103 1144330 484312 273461 432490 1167978 608356 1264836 16454 18917 1057300 2451731 262660 424736 8750 262660 433486 X 186284 -449193 608356 2467438 794640 2018245 1057300 2451731 1220691 2914 0 X false true X true false X 188470 498421 2236878 916996 3019774 6860539 188470 498421 2236878 916996 3019774 6860539 4277007 2583532 7967 270 8237 73 85 158 6868934 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED X 3125708 2914 2914 3122794 3122794 1902103 1902103 1902103 Part X, Line 2-Text in footnote regarding FIN 48 (ASC 740) The Organization is a tax-exempt entity under Code Section 501(c)(3) of the Internal Revenue Code (the Code), and are exempt from federal income taxes on related income pursuant to Section 501(a) of the Code and is not considered to be a private foundation. In addition, the Organization is subject to income tax on net income that is derived from business activities that are unrelated to their exempt purposes. Management has determined that the entity is not subject to unrelatedbusiness income tax and has not filed an Exempt Organization Business Income Tax Return (Form 990-T) with the IRS. Accordingly, no provision for income taxes is included in the financial statements. The Organization has filed all of its known and required tax returns in a timely manner, including as permitted, allowed extensions. X X false false false false false false false false false HOANGMAI PHAM President 227083 13500 240583 MAY-LYNN ANDERSEN Director of Partnerships 153305 11418 9127 173850 LAUREN ERICKSON Policy Director 189469 11556 201025 Form 990 governing body review Part VI line 11 The IRS Form 990 was prepared by an indpendent CPA and provided to the full Board prior to filing. CEO executive director top management comp Part VI line 15a The executive committee conducts an annual review of the performance of the CEO, including setting compensation for the year. the CEO is responsible for setting the compensation of other key employees of the organization within the parameters of the budget approved by the board of directors. in setting salaries, the CEO reviews information on similar positions at comparable organizations from salary surveys. Other officer or key employee compensation Part VI line 15b Compensation is determined through the annual budgeting process. Governing documents etc available to public Part VI line 19 These documents are available upon request. List of other fees for services expenses Part IX line 11g Other Professioanal Fees and Consulting $440,229 Payroll Service Fees $7,734 Self-Advocates & Care Partners $33,685 Communications $30,777 IT Management & Installation $300