One record for the whole care team

By the numbers

• 1 in 318-year-olds in the U.S. has autism (Shaw et al., 2025)
• 61%of autism centers report evaluation waits over 4 months; 15% over a year or closed to new referrals (Kraft et al., 2023)
• 9×higher odds that an ED visit by a child with autism is for a psychiatric problem: 13% of visits against 2% (Kalb et al., 2012)
• Almost 1 in 4Medicaid families of children with special health care needs who needed extra help coordinating care never got it (MACPAC, 2023)

Published figures, not FPK data. The prevalence figure is from 16 monitoring sites; the wait-time figures are from a survey of 111 U.S. autism centers.

The cost of uncoordinated care

Published research, with citations. None of these figures are FPK data.

• Emergency departments become the safety net. Psychiatric reasons accounted for 12.9% of emergency department visits by children with autism, against 1.75% for other children (Kalb et al., 2012). Adolescents with autism used emergency departments about four times as often as peers. (Liu et al., 2017)
• Autistic patients wait longer for a bed. Among admitted patients with acute mental health concerns, autism was associated with higher odds of emergency department boarding (adjusted odds ratio 1.68), and of boarding for more than 48 hours (3.91). (Cohen et al., 2026)
• Hospital use has grown. Hospitalizations of children with autism nearly tripled between 1999 and 2009, with mental health the main discharge diagnosis (Nayfack et al., 2014). In 2016, children and youth with autism accounted for more than 45,000 hospitalizations costing about $561 million, averaging about $12,500 per stay. (McMaughan et al., 2022)
• Higher everyday health costs. A CDC-authored analysis estimated autism adds $3,930 to $5,621 a year in healthcare costs per child (2018 dollars) (Zuvekas et al., 2021). The lifetime cost of supporting an autistic person in the US has been estimated at $1.4 million, or $2.4 million with intellectual disability. (Buescher et al., 2014)
• Feeding problems are common. Children with autism have about five times the odds of feeding problems of their peers (odds ratio 5.11), with lower calcium and protein intake. (Sharp et al., 2013)
• Diagnosis comes late and waits are long. The median age at earliest known autism diagnosis is 47 months (Shaw et al., 2025), and families wait from three and a half months to a year for a diagnostic evaluation (HRSA). Bringing developmental-behavioral pediatrics into primary care cut average waits from 137 days to 57 in one federally qualified health center. (Martin-Herz et al., 2020)
• Coordination reduces acute care. Across 43 pediatric practices, stronger medical home implementation, including care coordination, was associated with significantly fewer hospitalizations, and better chronic-condition management with lower emergency department use. (Cooley et al., 2009)
• School-based Medicaid depends on documentation. Federal audits of school-based Medicaid claims have repeatedly found services that could not be supported by records: in one state, 32 of 200 sampled services did not meet documentation requirements (HHS OIG, 2020); in others, hundreds of millions of dollars were found improperly claimed, largely for unsupported or undocumented activity (HHS OIG, 2021; 2024). CMS guidance is explicit that flexibilities do not replace the minimum documentation required for payment. (CMS, 2023)

What a crisis costs: national benchmarks

These are hospital costs (estimated from charges), not charges or payments. Your plan’s paid amounts will differ.

Proof that coordination pays

In a randomized trial of high-risk children with chronic illness, comprehensive coordinated care in an enhanced medical home cut, per 100 child-years (Mosquera et al., 2014):

• −52%emergency department visits (90 vs 190)
• −49%hospitalizations (69 vs 131)
• −55%children with a serious illness (10 vs 22)
• −$10,258cost per child-year ($16,523 vs $26,781)

Percentages are the trial’s rate ratios. One site, 201 children; the authors call for larger studies. It tested a clinical medical home, not FPK-X.

An illustrative case

The case follows a five-year-old with autism, severe food selectivity and a trauma history through a 12–18 month wait for a medical evaluation, three emergency and inpatient episodes (including emergency feeding-tube surgery), and a recommended out-of-home behavioral placement. The case author estimates $59,000 to $131,000 in acute and placement costs in a single year.

1. School sees it

   The school makes an educational autism finding, but there is no medical diagnosis, so no feeding-clinic access.

2. A 12–18 month wait

   The medical evaluation hinges on paper rating scales sent by mail.

3. Nutrition fails

   ED visits, an inpatient stay, then emergency feeding-tube surgery. A site infection and readmission follow, and the child is kept home from school.

4. Placement

   Behavior escalates; a 3–6 month out-of-home placement is recommended.

Every step was visible to someone. Nobody held all of it, so medical necessity couldn’t be shown in time.

Illustrative case: estimated costs within one year

• Estimate, or low end of range
• Range to high end

1st ED visit + inpatient admission$15,000

2nd ED visit + emergency PEG tube$20,000

3rd ED visit + inpatient antibiotics$6,000

Out-of-home placement, 3–6 months$18,000–$90,000

Total within one year$59,000–$131,000+

What plans evaluate, and where FPK-X stands today

These evaluation criteria were prepared by a Medicaid care-coordination professional. The status column says what our evidence shows today; where something is not yet built, we say so.

• Shown in use with a real team
• Partly shown some of it in use
• Modeled estimated, not measured
• To build not yet present

“Shown” refers to one school team’s use of FPK-X in the 2025–26 school year. See what we’ve measured so far for that result and its limits.

Model it on your own members

Avoided events × your paid cost. At the national benchmarks above, preventing one pediatric hospital stay and two ED visits for one child is about $14,300 ($13,400 + 2 × $440), before any out-of-home placement is avoided. Your own claims data gives the real figure.

A proposed pilot

We would like to test this with a plan, and measure it properly. We agree the measures up front, such as ED visits, admissions, and time to diagnosis and authorization, and report against your claims:

1. Enroll a cohort of high-acuity members with autism and co-occurring needs.
2. Connect family, school, primary care and specialty providers in FPK-X.
3. Measure days from referral to evaluation and to authorization.
4. Track ED visits, admissions and out-of-home placements against a matched comparison group.
5. Report cost of care per member per month.

References

1. Buescher, A. V. S., Cidav, Z., Knapp, M., & Mandell, D. S. (2014). Costs of autism spectrum disorders in the United Kingdom and the United States. JAMA Pediatrics, 168(8), 721–728. doi:10.1001/jamapediatrics.2014.210
2. CMS (2023). Delivering services in school-based settings: A comprehensive guide to Medicaid services and administrative claiming. Centers for Medicare & Medicaid Services.
3. Cohen, J. S., Patel, P., Finney, A., Zheng, M., Badaki, O., & Prichett, L. (2026). Prolonged emergency department stays for patients with autism and acute mental health concerns. Journal of Emergency Medicine, 80, 253–265. doi:10.1016/j.jemermed.2025.10.042
4. Cooley, W. C., McAllister, J. W., Sherrieb, K., & Kuhlthau, K. (2009). Improved outcomes associated with medical home implementation in pediatric primary care. Pediatrics, 124(1), 358–364. doi:10.1542/peds.2008-2600
5. HHS Office of Inspector General (2020). Florida did not always claim Medicaid reimbursement for school-based services in accordance with federal and state requirements (A-04-18-07075).
6. HHS Office of Inspector General (2021). New York school-based health services (A-02-18-01019).
7. HHS Office of Inspector General (2024). Pennsylvania school-based services (A-02-21-01011).
8. HRSA Maternal and Child Health Bureau. Autism CARES Developmental-Behavioral Pediatrics Training Program fact sheet.
9. Kalb, L. G., Stuart, E. A., Freedman, B., Zablotsky, B., & Vasa, R. (2012). Psychiatric-related emergency department visits among children with an autism spectrum disorder. Pediatric Emergency Care, 28(12), 1269–1276. doi:10.1097/PEC.0b013e3182767d96
10. Kraft, C., Badesch, S., Shannon, J., Salomon, C., Seal, M., Chettiath, T., & Taraman, S. (2023). Wait times and processes for autism diagnostic evaluations: A first report survey of autism centers in the U.S. Poster, CMS Health Equity Conference (sponsored by Cognoa). cms.gov
11. Liu, G., Pearl, A. M., Kong, L., Leslie, D. L., & Murray, M. J. (2017). A profile on emergency department utilization in adolescents and young adults with autism spectrum disorders. Journal of Autism and Developmental Disorders, 47(2), 347–358. doi:10.1007/s10803-016-2953-8
12. Medicaid and CHIP Payment and Access Commission (2023). Medicaid access in brief: Children and youth with special health care needs. MACPAC issue brief, March 2023 (2019 National Survey of Children’s Health). macpac.gov
13. Martin-Herz, S. P., Buysse, C. A., DeBattista, A., & Feldman, H. M. (2020). Colocated developmental-behavioral pediatrics in primary care. Journal of Developmental & Behavioral Pediatrics. doi:10.1097/DBP.0000000000000789
14. McMaughan, D. J., Jones, J., Mulcahy, A., Tucker, E. C., Beverly, J. G., & Perez-Patron, M. (2022). Hospitalizations among children and youth with autism in the United States: Frequency, characteristics and costs. Intellectual and Developmental Disabilities, 60(6), 484–503. doi:10.1352/1934-9556-60.6.484
15. Moore, B. J., Freeman, W. J., & Jiang, H. J. (2019). Costs of pediatric hospital stays, 2016. HCUP Statistical Brief #250. Agency for Healthcare Research and Quality. hcup-us.ahrq.gov
16. Mosquera, R. A., Avritscher, E. B., Samuels, C. L., et al. (2014). Effect of an enhanced medical home on serious illness and cost of care among high-risk children with chronic illness: A randomized clinical trial. JAMA, 312(24), 2640–2648. doi:10.1001/jama.2014.16419
17. Nayfack, A. M., Huffman, L. C., Feldman, H. M., et al. (2014). Hospitalizations of children with autism increased from 1999 to 2009. Journal of Autism and Developmental Disorders, 44(5), 1087–1094. doi:10.1007/s10803-013-1965-x
18. Roemer, M. (2024). Costs of treat-and-release emergency department visits in the United States, 2021. HCUP Statistical Brief #311. Agency for Healthcare Research and Quality. hcup-us.ahrq.gov
19. Sharp, W. G., Berry, R. C., McCracken, C., et al. (2013). Feeding problems and nutrient intake in children with autism spectrum disorders: A meta-analysis. Journal of Autism and Developmental Disorders, 43(9), 2159–2173. doi:10.1007/s10803-013-1771-5
20. Shaw, K. A., Williams, S., Patrick, M. E., et al. (2025). Prevalence and early identification of autism spectrum disorder among children aged 4 and 8 years, ADDM Network, 16 sites, United States, 2022. MMWR Surveillance Summaries, 74(2), 1–22. doi:10.15585/mmwr.ss7402a1
21. Zuvekas, S. H., Grosse, S. D., Lavelle, T. A., Maenner, M. J., Dietz, P., & Ji, X. (2021). Healthcare costs of pediatric autism spectrum disorder in the United States, 2003–2015. Journal of Autism and Developmental Disorders, 51(8), 2950–2958. doi:10.1007/s10803-020-04704-z

For the research on documentation burden and structured data in schools, see the research behind FPK.