Distilling innovative US autism care programs that address widely perceived unmet patient and family needs

Abstract

Current mainstream care for autistic individuals is fragmented, narrow, and poorly individualized. To better describe cutting-edge autism care, we searched for care programs in the United States that had been collaboratively designed with patients and families and that carry the highest potential to improve the quality of life of autistic individuals and their families. Using a modified Delphi method, we gathered input via conversations and surveys from 55 autistic adults, family members, practicing clinicians, and autism specialized researchers. As a result, 90 innovative autism care programs were nominated. We distilled these nominations to 15 programs across the United States by applying researcher-selected criteria, such as providing services actively and having data on program effectiveness. Then, we recruited 10 experts to rate the novelty, clinical benefits to individuals, clinical benefits to family caregivers, care costs for autistic individuals, societal costs, adaptability, and feasibility of the 15 programs. Common features of the 15 programs include care coordination and integration, care delivery, payment, and providing care in underserved clinical areas.

Lay abstract

Currently, the quality of care for autistic individuals is not good. Many care services for autistic individuals are not well coordinated, nor are they tailored. We wanted to find out a better model for autism care and believed that the autism community knows where these programs are. So, we had conversations with and surveyed 55 autistic adults, family members, clinicians, and researchers. They shared 90 innovative autism care programs that had been collaboratively designed with patients and families and that are likely to improve the quality of life of autistic individuals and their families. We then narrowed down the 90 nominated programs to 15 programs across the United States by applying researcher-selected criteria, such as providing services actively and having data on program effectiveness. We compiled a list of these innovative, quality autism care programs.

Keywords

autism spectrum disorders family functioning and support health services

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References

Bhattacharyya

Shaw

Sinha

Gordon

Shahid

Wodchis

W. P.

Anderson

(2020). Innovative integrated health and social care programs in eleven high-income countries: Study reports on thirty health and social care programs in eleven high-income countries that delivered care in innovative ways. Health Affairs, 39(4), 689–696. https://doi.org/10.1377/hlthaff.2019.00826

Cheak-Zamora

N. C.

Farmer

J. E.

(2015). The impact of the medical home on access to care for children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 45(3), 636–644.

Chiri

Warfield

M. E.

(2012). Unmet need and problems accessing core health care services for children with autism spectrum disorder. Maternal and Child Health Journal, 16(5), 1081–1091. https://doi.org/10.1007/s10995-011-0833-6

Davidson

Halcomb

Hickman

Phillips

Graham

(2006). Beyond the rhetoric: What do we mean by a “model of care”? Australian Journal of Advanced Nursing, 23, 47–55. https://doi.org/10.1177/0269216319858237

Dawson

Rogers

Munson

Smith

Winter

Greenson

. . . Varley

(2010). Randomized, controlled trial of an intervention for toddlers with autism: The Early Start Denver Model. Pediatrics, 125(1), e17–e23. https://doi.org/10.1542/peds.2009-0958

Fueyo

Caldwell

Mattern

S. B.

Zahid

Foley

(2015). The health home: A service delivery model for autism and intellectual disability. Psychiatric Services, 66(11), 1135–1137. https://doi.org/10.1176/appi.ps.201400443

Knutsen

Wolfe

Burke

B. L.

Hepburn

Lindgren

Coury

(2016). A systematic review of telemedicine in autism spectrum disorders. Review Journal of Autism and Developmental Disorders, 3(4), 330–344. https://doi.org/10.1155/2012/121878

Okoli

Pawlowski

S. D.

(2004). The Delphi method as a research tool: An example, design considerations and applications. Information & Management, 42(1), 15–29. https://doi.org/10.1016/j.im.2003

Riedl

Blohm

Leimester

J. M.

Krcmar

(2010, December 12–15). Rating scales for collective intelligence in innovation communities: Why quick and easy decision making does not get it right [Conference session]. Proceedings of Thirty First International Conference on Information Systems (ICIS ’10), St. Louis, MO, United States.

10.

Waisman Center. (2008). Medical home services for autism spectrum disorders. https://www2.waisman.wisc.edu/cedd/guidelines/pdf/Autism_Flip.pdf

11.

Wall

D. P.

Kosmicki

Deluca

T. F.

Harstad

Fusaro

V. A.

(2012). Use of machine learning to shorten observation-based screening and diagnosis of autism. Translational Psychiatry, 2(4), Article e100. https://doi.org/10.1038/tp.2012.10

12.

Zamanzadeh

Jasemi

Valizadeh

Keogh

Taleghani

(2015). Effective factors in providing holistic care: A qualitative study. Indian Journal of Palliative Care, 21(2), 214–224. https://doi.org/10.4103/0973-1075.156506

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