{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,11]],"date-time":"2026-08-11T08:29:06Z","timestamp":1786436946626,"version":"build-2736575974"},"reference-count":42,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2026,8,7]],"date-time":"2026-08-07T00:00:00Z","timestamp":1786060800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"},{"start":{"date-parts":[[2026,8,7]],"date-time":"2026-08-07T00:00:00Z","timestamp":1786060800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Journal of Pediatric Rehabilitation Medicine"],"abstract":"<jats:sec>\n                    <jats:title>Purpose<\/jats:title>\n                    <jats:p>The purpose of this study was to explore the experiences of parents of youth and young adults with intellectual and developmental disabilities who have undergone the transition from pediatric to adult healthcare as well as community-based transition and adult-focused services to better understand the barriers faced when individuals transition.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Eleven parents were recruited via email flyers and research information sheets, which were distributed to parent support\/disability advocacy groups that are community partners of the Children\u2019s Hospital Los Angeles University Center for Excellence in Developmental Disabilities. The study interview guide consisted of 11 open-ended questions. The questions were designed to explore experiences with their youth and young adults\u2019 health care transition experience. Question items pertaining to barriers (five questions) with community-based services identified during the transition process are reported in this paper. All interviews were conducted via phone, audio-recorded, and transcribed.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Analysis of the data generated four major themes with subthemes. The day programs theme consisted of four subthemes: a) do not know what programs are available; b) lack of staffing; c) day program not appropriate; and d) waitlist. The education theme included four subthemes: a) no transition support provided; b) transition support not adequate; c) vocational training inadequate or not available; and d) need for adult supervision. The employment barrier theme contained three subthemes: a) loss of benefits; b) transition support not provided; and c) lack of accommodations or lack of options. The independent living barrier was composed of six subthemes: a) lack of resources; b) public benefits take a long time; c) self-determination services still inadequate; d) no transportation available; e) need to know to ask for services; and f) challenges pertaining to conservatorship.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>The findings revealed parents encountered numerous barriers to assisting their youth and young adults in assessing educational, employment, and community living services. The analysis supports the findings from previous studies and provides new insights and understanding.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/18758894261476176","type":"journal-article","created":{"date-parts":[[2026,8,7]],"date-time":"2026-08-07T07:17:19Z","timestamp":1786087039000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["Parents of youth and young adults with intellectual and developmental disabilities: Barriers experienced during transition"],"prefix":"10.1177","author":[{"given":"Christine Bottrell","family":"Mirzaian","sequence":"first","affiliation":[{"name":"CHLA UCEDD"},{"name":"Children\u2019s Hospital Los Angeles"},{"name":"Department of Pediatrics, Keck School of Medicine of USC"},{"name":"CHLA Peer Navigator Employment Training Program (PNETP)"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rowan","family":"Smith","sequence":"additional","affiliation":[{"name":"CHLA Peer Navigator Employment Training Program (PNETP)"},{"name":"CHLA University Center for Excellence in Developmental Disabilities"},{"name":"Children\u2019s Hospital Los Angeles"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0987-9176","authenticated-orcid":false,"given":"Cecily L.","family":"Betz","sequence":"additional","affiliation":[{"name":"CHLA Peer Navigator Employment Training Program (PNETP)"},{"name":"CHLA University Center for Excellence in Developmental Disabilities"},{"name":"Children\u2019s Hospital Los Angeles"},{"name":"Keck School of Medicine of USC"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2026,8,7]]},"reference":[{"key":"e_1_3_3_2_2","doi-asserted-by":"publisher","DOI":"10.1007\/978-3-030-23384-6"},{"key":"e_1_3_3_3_2","unstructured":"White P Fremion E McManus M. Clinical report \u2013 Reaffirmed With reference & data updates. Available from. https:\/\/publications.aap.org\/pediatrics\/article\/142\/5\/e20182587\/38577\/Supporting-the-Health-Care-Transition-From?autologincheck=redirected"},{"key":"e_1_3_3_4_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.jadohealth.2024.05.007"},{"key":"e_1_3_3_5_2","doi-asserted-by":"publisher","DOI":"10.1080\/24694193.2021.1933264"},{"key":"e_1_3_3_6_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.pedn.2020.01.002"},{"key":"e_1_3_3_7_2","doi-asserted-by":"publisher","DOI":"10.1111\/cch.13114"},{"key":"e_1_3_3_8_2","doi-asserted-by":"publisher","DOI":"10.1037\/a0036725"},{"key":"e_1_3_3_9_2","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2012-1572"},{"key":"e_1_3_3_10_2","doi-asserted-by":"publisher","DOI":"10.1007\/s10995-019-02858-6"},{"key":"e_1_3_3_11_2","doi-asserted-by":"publisher","DOI":"10.1016\/1054-139X(93)90143-D"},{"key":"e_1_3_3_12_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.hctj.2024.100045"},{"key":"e_1_3_3_13_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.hctj.2024.100067"},{"key":"e_1_3_3_14_2","doi-asserted-by":"publisher","DOI":"10.3233\/PRM-140277"},{"key":"e_1_3_3_15_2","doi-asserted-by":"publisher","DOI":"10.1001\/jamapediatrics.2015.3168"},{"key":"e_1_3_3_16_2","unstructured":"World Health Organization. Basic documents: forty-ninth edition (including amendments adopted up to 31 May 2019). Licence: CC BY-NC-SA 3.0 IGO 2020. https:\/\/apps.who.int\/gb\/bd\/pdf_files\/Bd_49th-en.pdf. Accessed January 31 2025."},{"key":"e_1_3_3_17_2","doi-asserted-by":"publisher","DOI":"10.15585\/mmwr.mm6934a2"},{"key":"e_1_3_3_18_2","volume-title":"Intellectual and developmental disabilities nursing: Scope and standards of practice","author":"Betz CL","year":"2022","unstructured":"Betz CL, Adams J, Burkett KW, et al. Intellectual and developmental disabilities nursing: Scope and standards of practice. 3rd ed. American Nurses Association, 2022. ISBN 9781947800892.","edition":"3"},{"key":"e_1_3_3_19_2","doi-asserted-by":"publisher","DOI":"10.3109\/13668250.2021.1873753"},{"key":"e_1_3_3_20_2","volume-title":"The post-high school outcomes of young adults with disabilities up to 8 years after high school. A report from the National Longitudinal Transition Study-2 (NLTS2) (NCSER 2011-3005)","author":"Newman L","year":"2011","unstructured":"Newman L, Wagner M, Knokey AM, et al. The post-high school outcomes of young adults with disabilities up to 8 years after high school. A report from the National Longitudinal Transition Study-2 (NLTS2) (NCSER 2011-3005). SRI International, 2011."},{"key":"e_1_3_3_21_2","doi-asserted-by":"publisher","DOI":"10.1352\/1934-9556-60.2.128"},{"key":"e_1_3_3_22_2","doi-asserted-by":"publisher","DOI":"10.1177\/2165143420959793"},{"key":"e_1_3_3_23_2","doi-asserted-by":"publisher","DOI":"10.1352\/1934-9556-62.3.225"},{"key":"e_1_3_3_24_2","volume-title":"Annual report on people with disabilities in America: 2024","author":"Houtenville A","year":"2024","unstructured":"Houtenville A, Bach S (eds). Annual report on people with disabilities in America: 2024. University of New Hampshire, Institute on Disability, 2024."},{"key":"e_1_3_3_25_2","unstructured":"American Association on Intellectual and Developmental Disabilities Association of University Centers on Disabilities. Community Living and Participation for People with Intellectual and Developmental Disabilities: Joint Position Statement of AAIDD and AUCD. AAIDD. 2016; Accessed January 31 2025."},{"key":"e_1_3_3_26_2","volume-title":"30 years of Community Living for individuals with intellectual and\/or developmental disabilities (1987- 2017)","author":"Larson SA","year":"2021","unstructured":"Larson SA, Butterworth J, Winsor J, et al. 30 years of Community Living for individuals with intellectual and\/or developmental disabilities (1987- 2017). Administration for Community Living, U.S. Department of Health and Human Services, 2021. https:\/\/acl.gov\/30years. Accessed January 31, 2025."},{"key":"e_1_3_3_27_2","doi-asserted-by":"publisher","DOI":"10.1111\/jspn.12415"},{"key":"e_1_3_3_28_2","doi-asserted-by":"publisher","DOI":"10.1007\/s10803-016-3020-1"},{"key":"e_1_3_3_29_2","doi-asserted-by":"publisher","DOI":"10.1080\/20473869.2022.2141877"},{"key":"e_1_3_3_30_2","doi-asserted-by":"publisher","DOI":"10.1007\/s10803-019-03893-6"},{"key":"e_1_3_3_31_2","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2788.2012.01564.x"},{"issue":"7","key":"e_1_3_3_32_2","first-page":"886","article-title":"An Examination of Health Care Transition Experiences Through Parents' Reflections About Their Sons or Daughters Who Have Intellectual and Developmental Disabilities","volume":"12","author":"Mirzaian CB","year":"2025","unstructured":"Mirzaian CB, Smith R, Betz CL. An Examination of Health Care Transition Experiences Through Parents' Reflections About Their Sons or Daughters Who Have Intellectual and Developmental Disabilities. Children (Basel) 2025; 12(7): 886. https:\/\/doi.org\/10.3390\/children12070886, PMID: 40723079; PMCID: PMC12293911.","journal-title":"Children (Basel)"},{"key":"e_1_3_3_33_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.pedn.2006.07.006"},{"key":"e_1_3_3_34_2","doi-asserted-by":"publisher","DOI":"10.1186\/1471-2288-13-117"},{"key":"e_1_3_3_35_2","doi-asserted-by":"publisher","DOI":"10.1111\/jan.13985"},{"key":"e_1_3_3_36_2","doi-asserted-by":"publisher","DOI":"10.1111\/bld.12327"},{"key":"e_1_3_3_37_2","doi-asserted-by":"publisher","DOI":"10.1097\/DBP.0000000000000840"},{"key":"e_1_3_3_38_2","doi-asserted-by":"publisher","DOI":"10.1111\/j.1741-1130.2011.00286.x"},{"key":"e_1_3_3_39_2","doi-asserted-by":"publisher","DOI":"10.1111\/jar.12394"},{"key":"e_1_3_3_40_2","unstructured":"United States. Rehabilitation Act of 1973. Pub L No. 93-112 87 Stat. 355 (1973). Available from: https:\/\/www.govinfo.gov\/app\/details\/STATUTE-87\/STATUTE-87-Pg355"},{"key":"e_1_3_3_41_2","unstructured":"United States. Individuals with Disabilities Education Act. 20 USC \u00a7\u00a7 1400\u20131482 (2004). Available from: https:\/\/uscode.house.gov\/view.xhtml?path=\/prelim@title20\/chapter33&edition=prelim"},{"key":"e_1_3_3_42_2","first-page":"10e7","article-title":"Transfer from pediatric to adult health care: Effects on diabetes outcomes","volume":"15","author":"Lyons SK","year":"2013","unstructured":"Lyons SK, Becker DJ, Helgeson VS. Transfer from pediatric to adult health care: Effects on diabetes outcomes. Pediatr Diabetes 2013; 15: 10e7. https:\/\/doi.org\/10.1111\/pedi.12106","journal-title":"Pediatr Diabetes"},{"key":"e_1_3_3_43_2","unstructured":"United States. Workforce Innovation and Opportunity Act. Pub L No. 113-128 128 Stat. 1425 (2014). Available from: https:\/\/www.govinfo.gov\/app\/details\/PLAW-113publ128"}],"container-title":["Journal of Pediatric Rehabilitation Medicine"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/18758894261476176","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/18758894261476176","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/18758894261476176","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,8,11]],"date-time":"2026-08-11T07:46:29Z","timestamp":1786434389000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/18758894261476176"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,8,7]]},"references-count":42,"alternative-id":["10.1177\/18758894261476176"],"URL":"https:\/\/doi.org\/10.1177\/18758894261476176","relation":{},"ISSN":["1874-5393","1875-8894"],"issn-type":[{"value":"1874-5393","type":"print"},{"value":"1875-8894","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,8,7]]},"article-number":"18758894261476176"}}