« Rien sur nous sans nous » rencontre le modèle « Tous enseignent, tous apprennent » : des autodéfenseurs autistes en tant que leaders et collaborateurs dans le cadre du projet ECHO

Titre original en anglais : “Nothing about Us without Us” Meets the “All Teach, All Learn” Model: Autistic Self-Advocates as Leaders and Collaborators in Project ECHO

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Casagrande, K. A., Davis, S., Moore, B. S., Dahiya, A. V., Smith, I., Krebsbach, S., & Mancini, J. (2024). “Nothing about Us without Us” Meets the “All Teach, All Learn” Model: Autistic Self-Advocates as Leaders and Collaborators in Project ECHO. Education Sciences, 14(8), 910. https://doi.org/10.3390/educsci14080910

Date de publication: 20/08/2024 Ajout dans AutiHub: 23/08/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
7
Auteur·ices de la publication identifié·es comme autistes
4 / 7 (57,1 %)
  1. Karís A. Casagrande
  2. Sage Davis *
  3. Benjamin S. Moore *
  4. Angela V. Dahiya
  1. Ivanova Smith *
  2. Sydney Krebsbach *
  3. James Mancini

Résumé

Les personnes ayant des déficiences intellectuelles et développementales (I/DD), en particulier l'autisme, représentent une population souvent mal comprise et insuffisamment desservie. Afin de remédier aux disparités de santé auxquelles sont confrontées les personnes ayant des I/DD dans l'État de Washington, le modèle Extension for Community Healthcare Outcomes (projet ECHO) a été mis en œuvre pour renforcer la capacité à servir ces personnes et leurs familles dans leurs communautés de résidence. Grâce à ce mentorat à distance et à cette communauté d'apprentissage d'une durée d'un an, des équipes d'experts animent des cliniques fondées sur une discussion interdisciplinaire de cas et un partage des connaissances avec des prestataires de soins médicaux, comportementaux et de santé mentale. Les autodéfenseurs autistes constituent une pierre angulaire de ces équipes d'experts et apportent un éclairage sur l'expérience vécue. Dans cet article, nous examinerons comment l'inclusion de six autodéfenseurs autistes dans quatre programmes ECHO différents a permis aux participants d'ECHO d'élargir leurs horizons et d'acquérir de nouvelles perspectives sur les soutiens destinés à leurs clients ayant des I/DD dans de multiples aspects des soins. Outre les connaissances uniques apportées par les autodéfenseurs, leur participation illustre le potentiel qu'ont toutes les personnes ayant des I/DD de mener une vie riche et épanouissante. La mise en œuvre initiale et le succès continu de l'inclusion de l'expérience vécue dans le modèle ECHO peuvent servir d'exemple de la manière de créer des partenariats qui éclairent de façon significative les décisions et améliorent l'équité des résultats dans la prestation de services.

Those with intellectual and developmental disabilities (I/DD), especially autism, represent an often misunderstood and underserved population. In order to address health disparities faced by those with I/DD in Washington state, the Extension for Community Healthcare Outcomes (Project ECHO) model was implemented to build capacity to serve these individuals and their families in their home communities. Through this year-long telementorship and learning community, expert teams lead clinics based on interdisciplinary case-based discussion and knowledge sharing with medical, behavioral, and mental healthcare providers. A cornerstone of these expert teams are autistic self-advocates, who provide insight into lived experience. In this paper, we will discuss how the inclusion of six autistic self-advocates across four different ECHO programs has allowed ECHO participants to broaden their horizons and gain new insight into supports for their I/DD clients across multiple aspects of care. In addition to the unique knowledge provided by self-advocates, their participation illustrates the potential for all people with I/DD to live rich and fulfilling lives. The initial implementation and on-going success of including lived experience within the ECHO model can be used as an example of how to create partnerships that meaningfully inform decisions and improve equitable outcomes in service provision.

Bibliographie citée par cette référence

Les références citées sont importées depuis des sources externes de métadonnées lorsqu’elles sont disponibles. La liste peut être partielle.

Vue d’ensemble de la bibliographie citée

Ces indicateurs décrivent la bibliographie citée par cette publication. Un nom d’auteurice est compté chaque fois qu’il apparaît dans une référence citée : une même personne peut donc être comptée plusieurs fois. Les noms qui ne sont pas encore associés à un·e auteurice déjà présent·e dans AutiHub sont traités comme inconnus, pas comme non autistes. Dernier calcul : 23/08/2026 08:58.

Références citées
60
Avec un DOI
58
Sans DOI, à partir du texte brut de la bibliographie
2
4 / 60 (6,7 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
1 / 60 (1,7 %)
Références avec noms d’auteurices détectés
59 / 60 (98,3 %)
Sans nom d’auteurice détecté
1
Sans titre structuré
1
Sans identifiant stable
1
Références avec noms bruts d’auteurices restant à vérifier
0
Références avec problème de récupération des métadonnées externes
0
Ces indicateurs portent sur les références citées affichées sur cette page, après fusion des doublons techniques. Une référence sans DOI peut quand même soutenir les statistiques d’auteurices lorsqu’un titre et des noms d’auteurices sont disponibles.
Noms d’auteurices détectés dans la bibliographie citée
309
À partir du DOI ou de métadonnées externes
309
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
2
85 / 309 (27,5 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 224 / 309 (72,5 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
8 / 309 (2,6 %)
Calculé sur l’ensemble des noms d’auteurices détectés dans la bibliographie citée. Parmi les noms associés à un·e auteurice déjà présent·e dans AutiHub : 8 / 85 (9,4 %). Personnes distinctes identifiées comme autistes : 8 / 277 (2,9 %).
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