[Guidelines and standards: autonomy in intellectually disabled young people aged 6 to 21 years]

Boisvert I, Lortie V, Mercier M, Saury S
Record ID 32018000853
Original Title: Guides et normes: autonomie des jeunes âgés de 6 à 21 ans qui présentent une déficience intellectuelle
Authors' objectives: The objective of this guideline is to promote informed and shared decision-making between intellectually disabled young people aged 6 to 21 years, their parents and clinicians regarding the interventions to be implemented to improve these youths’ autonomy and support their parents in this regard. The clinical practice guideline is also in line with the government's policy À part entière: pour un véritable exercice du droit à l'égalité, which invites all public and private stakeholders to support social participation of people with disabilities. The guideline is based on the following values: • dignity; • self-determination; • equality; • social justice. It is also based on the principle that every person: • can learn and develop throughout his life; • is a valid partner in an equal relationship and that he can influence and question clinician’s positions; • must be considered a full citizen with the same rights and responsibilities as any other individual and be recognized as being free to self-determine in various areas of his life; • must be respected with regard to his cultural, religious and sexual identity; • must be supported so that he can actively engage in all areas of his life, based on both what he can and wants to do. It was agreed with the stakeholders consulted that the guideline would cover the following: • intellectually disabled people aged 6 to 21 years and their families; • the implementation phase of the intervention, which follows the evaluation and planning phases in the clinical process; • autonomy in accomplishing life habits, as defined in the Human Development Model – Disability Creation Process (HDM-DCP); • interventions for which the efficacy results have been reported in scientific literature. The guideline is intended primarily for specialized educators, psychoeducators, clinical supervisors and managers in the HSSS who work with intellectually disabled young people and their families. It may also be useful to different professionals in the HSSS, clinicians in the community and the education sector, and parents.
Authors' results and conclusions: RESULTS: The overarching principles that clinicians need to take into consideration were identified. They are as follows: • focus the intervention on the young person in order to promote his self-determination and ability to act; • maintain partnership between the young person, their parents and clinicians; • base interventions on an assessment carried out in accordance with the fields of practice and the reserved activities; • work towards a continuum of interprofessional collaborative practices; • use different child and adolescent developmental theories to guide the choice and implementation of interventions; • propose realistic learning challenges and take the features of the person with intellectual disability into consideration; • foster intersectoral collaboration. In addition, this guideline reiterates the importance of ongoing training and clinical support for clinicians to ensure the development of their expertise and intervention skills with young people and their families. CONCLUSION: INESSS hopes that this guideline will promote a common vision of the issues related to the development of autonomy and that it becomes a reference for clinicians and managers working with intellectually disabled young people and their parents. The use of the HDM-DCP as a conceptual model is intended to facilitate the implementation of the recommendations, since it is part of an existing practice. By proposing the skills to be developed, the guideline also supports a long-term intervention perspective focused on the challenges that mark the young person’s journey from childhood to adulthood.
Authors' methods: The recommendations made in this guideline are based on a combination of scientific, experiential and contextual data collected through: • a systematic review of the scientific literature on the efficacy of interventions; • a narrative review of the literature on interventions’ applicability and acceptability and, in particular, on the expectations and needs of young people, their parents and clinicians regarding interventions to improve the autonomy of young people with intellectual disability; • focus groups and interviews with intellectually disabled young people and parents; • a survey of Québec clinicians to better understand the intervention context; • consultations with various clinical experts in Québec. The recommendations were validated and enhanced through an iterative and deliberative process in collaboration with the members of the Advisory Committee. The members of the Monitoring Committee also helped guide the work and develop the recommendations. For their part, the members of the Clinical Excellence Committee provided a perspective on the project process and data synthesis.
Project Status: Completed
Year Published: 2019
Requestor: Minister of Health
English language abstract: An English language summary is available
Publication Type: Other
Country: Canada
Province: Quebec
MeSH Terms
  • Personal Autonomy
  • Intellectual Disability
  • Child
  • Adolescent
  • Young Adult
  • Human Rights
  • Intellectually disabled young people
Organisation Name: Institut national d'excellence en sante et en services sociaux
Contact Address: L'Institut national d'excellence en sante et en services sociaux (INESSS) , 2021, avenue Union, bureau 10.083, Montreal, Quebec, Canada, H3A 2S9;Tel: 1+514-873-2563, Fax: 1+514-873-1369
Contact Name: demande@inesss.qc.ca
Contact Email: demande@inesss.qc.ca
Copyright: Gouvernement du Québec
This is a bibliographic record of a published health technology assessment from a member of INAHTA or other HTA producer. No evaluation of the quality of this assessment has been made for the HTA database.