TY - JOUR
T1 - A Descriptive Analysis of Access to Assistive Technology in Children with Acquired Brain Injury
T2 - The Right to Assistive Devices
AU - Fins, Joseph J.
AU - Knitter, Julie
AU - Mukherjee, Debjani
AU - Conti, Karen
AU - Donleavy-Hiller, Barbara
AU - Gerber, Linda M.
AU - Hersh, Jennifer E.
AU - Kotorac-Erlbaum, Rita
AU - Milch, Barbara
AU - Klein, Scott M.
N1 - Publisher Copyright:
© 2024 Lippincott Williams and Wilkins. All rights reserved.
PY - 2024/3/1
Y1 - 2024/3/1
N2 - Objective: Pediatric clinicians caring for children with acquired brain injury have noted that many individuals requiring assistive technology (AT) go unserved or face delays until devices are obtained, with potential adverse implications for recovery and development. In this article we map the pathways by which AT is prescribed and assess delays and barriers to access. Methods: We conducted a retrospective chart review of patients with moderate to severe brain injury admitted to Blythedale Children's Hospital over a 2-year period using a database drawn from the medical record. Results: We identified 72 children diagnosed with brain injury requiring at least 1 device. Devices were used to improve mobility and positioning, self-care, safety, and communication, and enable access to other technologies and foster social integration. We found that 55% of devices were delivered, with most deliveries to home or the hospital's outpatient department for fitting, training, and instruction. Time to delivery ranged from 12 to 250 days with an average of 69.4 days. Twenty percent of nondeliveries were attributable to change in medical status, transfer to a skilled nursing facility, or continued inpatient status, while 31% were canceled by the family. Other nondeliveries were attributed to insurance coverage. We also found that the medical record is not designed for the longitudinal tracking of devices, indicating the need for a prospective process to document the AT trajectory. Conclusion: Instead of tolerating delays and denials, there should be a normative expectation that children have a right to medically necessary devices, consistent with disability law. This analysis was undertaken as a step toward formulating a prospective means of tracking AT recommendations, approvals, denials, and/or deliveries. Our findings should be understood as a promissory note toward structural reforms that are reflective of society's responsibility to better meet the needs of vulnerable children and their families.
AB - Objective: Pediatric clinicians caring for children with acquired brain injury have noted that many individuals requiring assistive technology (AT) go unserved or face delays until devices are obtained, with potential adverse implications for recovery and development. In this article we map the pathways by which AT is prescribed and assess delays and barriers to access. Methods: We conducted a retrospective chart review of patients with moderate to severe brain injury admitted to Blythedale Children's Hospital over a 2-year period using a database drawn from the medical record. Results: We identified 72 children diagnosed with brain injury requiring at least 1 device. Devices were used to improve mobility and positioning, self-care, safety, and communication, and enable access to other technologies and foster social integration. We found that 55% of devices were delivered, with most deliveries to home or the hospital's outpatient department for fitting, training, and instruction. Time to delivery ranged from 12 to 250 days with an average of 69.4 days. Twenty percent of nondeliveries were attributable to change in medical status, transfer to a skilled nursing facility, or continued inpatient status, while 31% were canceled by the family. Other nondeliveries were attributed to insurance coverage. We also found that the medical record is not designed for the longitudinal tracking of devices, indicating the need for a prospective process to document the AT trajectory. Conclusion: Instead of tolerating delays and denials, there should be a normative expectation that children have a right to medically necessary devices, consistent with disability law. This analysis was undertaken as a step toward formulating a prospective means of tracking AT recommendations, approvals, denials, and/or deliveries. Our findings should be understood as a promissory note toward structural reforms that are reflective of society's responsibility to better meet the needs of vulnerable children and their families.
KW - Americans with Disabilities Act
KW - assistive technology
KW - disability rights
KW - neurodevelopment
KW - neuroethics
KW - pediatric brain injury
KW - rehabilitation
UR - http://www.scopus.com/inward/record.url?scp=85184507264&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85184507264&partnerID=8YFLogxK
U2 - 10.1097/HTR.0000000000000876
DO - 10.1097/HTR.0000000000000876
M3 - Article
C2 - 37492972
AN - SCOPUS:85184507264
SN - 0885-9701
VL - 39
SP - 152
EP - 159
JO - Journal of Head Trauma Rehabilitation
JF - Journal of Head Trauma Rehabilitation
IS - 2
ER -