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OPINIONS & PERSPECTIVES

Self-determination: Adults with intellectual disability and their family

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Keep up to date with the latest research on this topic with citation updates for this article.

Read on this site (19)

Cristina Mumbardó-Adam, Araceli Arellano, Eva Vicente & Ana Berástegui. (2023) How should we support families of people with intellectual disability to promote their self-determination? A Delphi study on critical components for intervention. Journal of Intellectual & Developmental Disability 48:4, pages 357-369.
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Janette Lloyd, Karen Moni, Monica Cuskelly & Anne Jobling. (2023) National disability insurance scheme: is it creating an ordinary life for adults with intellectual disability?. Disability & Society 38:1, pages 1-20.
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Christine Bigby, Jacinta Douglas, Elizabeth Smith, Terry Carney, Shih-Ning Then & Ilan Wiesel. (2022) “I used to call him a non-decision-maker - I never do that anymore”: parental reflections about training to support decision-making of their adult offspring with intellectual disabilities. Disability and Rehabilitation 44:21, pages 6356-6364.
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Christine Bigby, Jacinta Douglas, Elizabeth Smith, Terry Carney, Shih-Ning Then & Ilan Wiesel. (2022) Parental strategies that support adults with intellectual disabilities to explore decision preferences, constraints and consequences. Journal of Intellectual & Developmental Disability 47:2, pages 165-176.
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David McConnell, Rahel More, Laura Pacheco, Marjorie Aunos, Lyndsey Hahn & Maurice Feldman. (2022) Childhood experience, family support and parenting by people with intellectual disability. Journal of Intellectual & Developmental Disability 47:2, pages 152-164.
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Fiona Rillotta & June Alexander. (2022) Roles and Responsibilities of Developmental Educators: Disability Professionals Supporting Australians with Disability. International Journal of Disability, Development and Education 69:2, pages 451-466.
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Marija Cvijetić, Svetlana Kaljača & Nenad Glumbić. (2021) The Role of Personal and Environmental Factors in Autonomous Behaviour of People with Intellectual Disability. International Journal of Disability, Development and Education 0:0, pages 1-16.
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Monica Cuskelly, Karen Moni, Mary McMahon, Anne Jobling, Jan Lloyd & Chez Leggatt-Cook. (2021) Futures of adults with intellectual disability: Staff expectations. Journal of Intellectual & Developmental Disability 46:4, pages 319-328.
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Fiona Rillotta, Lorraine Lindsay & Cassandra Gibson-Pope. (2021) The work integrated learning experience of a university student with intellectual disability: a descriptive case study. International Journal of Inclusive Education 0:0, pages 1-18.
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Maria Pallisera, Montserrat Vilà, Judit Fullana & Maria-Josep Valls. (2021) Being in control: Choice and control of support received in supported living. A study based on the narratives of people with intellectual disability and support staff. Journal of Intellectual & Developmental Disability 46:2, pages 164-174.
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Jan Lloyd, Karen Moni, Monica Cuskelly & Anne Jobling. (2020) Engaging with National Disability Insurance Scheme Planning: perspectives of parents of an adult with intellectual disability. Journal of Intellectual & Developmental Disability 45:3, pages 254-263.
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Kristina Engwall. (2019) Why live together? The stories of co-living parents and adult children with intellectual disabilities. Nordic Social Work Research 9:2, pages 118-130.
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Susan Collings, Angela Dew & Leanne Dowse. (2019) “They need to be able to have walked in our shoes”: What people with intellectual disability say about National Disability Insurance Scheme planning. Journal of Intellectual & Developmental Disability 44:1, pages 1-12.
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Leanne Dowse, Angela Dew & Alec Sewell. (2019) Background paper for ASID position statement on intellectual disability and complex support needs . Research and Practice in Intellectual and Developmental Disabilities 6:1, pages 5-13.
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Emily J. Steel. (2019) Understanding assistive technology as a pre-requisite for choice and participation. Journal of Occupational Science 26:1, pages 87-98.
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Vicente Martínez-Tur, Yolanda Estreder, Carolina Moliner, Esther Gracia, Luminița Pătraș & Ana Zornoza. (2018) Dialogue between workers and family members is related to their attitudes towards self-determination of individuals with intellectual disability. Journal of Intellectual & Developmental Disability 43:3, pages 370-379.
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Padraic Fleming, Sinead McGilloway & Sarah Barry. (2016) The successes and challenges of implementing individualised funding and supports for disabled people: an Irish perspective. Disability & Society 31:10, pages 1369-1384.
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Susan Collings, Angela Dew & Leanne Dowse. (2016) Support planning with people with intellectual disability and complex support needs in the Australian National Disability Insurance Scheme. Journal of Intellectual & Developmental Disability 41:3, pages 272-276.
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Articles from other publishers (39)

Hannah Casey, Deirdre Desmond & Laura Coffey. (2023) Irish mothers' experiences of providing support in decision‐making to adults with intellectual disabilities: A qualitative study. British Journal of Learning Disabilities.
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Ingrid Honan, Nicole Sharp, Sarah McIntyre, Hayley Smithers‐Sheedy, Isabelle Balde, Kirsten Quinn, Marita Morgan, Sophie Rothery, Teigan Butchers & Elizabeth A. Laugeson. (2022) Program evaluation of an adapted PEERS ® social skills program in young adults with autism spectrum disorder and/or mild intellectual impairment and social skills difficulties . Journal of Evaluation in Clinical Practice 29:1, pages 126-135.
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Cole Goldberg & Sharon Kleintjes. (2022) Hearing Their Voices: Self Advocacy Strategies for People with Intellectual Disabilities in South Africa. Disabilities 2:4, pages 588-599.
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Katherine Dewey & Sarah Horsley. (2022) Applying the principles of trauma-informed care in intellectual disability services. Learning Disability Practice 25:5, pages 26-33.
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Katelyn Beebe. (2022) Perceptions of Self-Determination in Music Therapy for Individuals Diagnosed with Intellectual Disabilities: A Survey of Music Therapists. Music Therapy Perspectives 40:1, pages 94-103.
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Ran Neuman & Diane N Bryen. (2022) Dare to Dream: The Changing Role of Social Work in Supporting Adults with Intellectual and Developmental Disabilities. The British Journal of Social Work 52:5, pages 2613-2632.
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David McConnell & Shanon Phelan. (2022) The devolution of eugenic practices: Sexual and reproductive health and oppression of people with intellectual disability. Social Science & Medicine 298, pages 114877.
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Kyung Mee Kim, Nichole Meyer, Jennifer Hall‐Lande & Rachel Freeman. (2021) Supervisory and administrative staff's perspectives of self‐directed supports for people with intellectual and developmental disabilities . Journal of Applied Research in Intellectual Disabilities 35:2, pages 480-487.
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Savra Anne Frounfelker & Anne Bartone. (2020) The importance of dignity and choice for people assessed as having intellectual disabilities. Journal of Intellectual Disabilities 25:4, pages 490-506.
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Wouter Dursin, Toon Benoot, Rudi Roose & Bram Verschuere. (2021) Choice and opportunity on the welfare care market: An experimental evaluation of decision‐making in a context of individual funding policy. Social Policy & Administration 55:7, pages 1276-1292.
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Patricia Spencer, James Van Haneghan & Abigail Baxter. (2021) Exploring social networks, employment and self-determination outcomes of graduates from a postsecondary program for young adults with an intellectual disability. Journal of Vocational Rehabilitation 55:3, pages 251-270.
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Sofie Wass, Mugula Chris Safari, Silje Haugland & Hans Olav Omland. (2021) Transitions from school to sheltered employment in Norway – Experiences of people with intellectual disabilities. British Journal of Learning Disabilities 49:3, pages 373-382.
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Mary Tencza & Lydia Forsythe. (2019) Transition-of-care planning: Preparing for the future care of the individual with intellectual and developmental disabilities. Journal of Intellectual Disabilities 25:2, pages 277-289.
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Lieke van Heumen & Alice P. Schippers. 2021. Mental Health, Intellectual and Developmental Disabilities and the Ageing Process. Mental Health, Intellectual and Developmental Disabilities and the Ageing Process 331 350 .
Clément Gazza, Anne Marcellini & Nathalie Le Roux. (2020) La participation sociale à l’association des paralysés de France : participation aux activités ou participation aux décisions ?. Alter 14:4, pages 265-285.
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Mary McMahon, Karen Moni, Monica Cuskelly, Jan Lloyd & Anne Jobling. (2020) Aspirations held by young adults with intellectual disabilities and their mothers. Australian Journal of Career Development 29:2, pages 107-116.
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Bernadette Curryer, Roger J. Stancliffe, Michele Y. Wiese & Angela Dew. (2019) The experience of mothers supporting self‐determination of adult sons and daughters with intellectual disability. Journal of Applied Research in Intellectual Disabilities 33:3, pages 373-385.
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Bernadette Curryer, Angela Dew, Roger J. Stancliffe & Michele Y. Wiese. 2020. Choice, Preference, and Disability. Choice, Preference, and Disability 283 302 .
Edward McCann, Lynne Marsh & Michael Brown. (2019) People with intellectual disabilities, relationship and sex education programmes: A systematic review. Health Education Journal 78:8, pages 885-900.
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Zoé Faubert & Georgette Goupil. (2019) Perceptions de pères vivant avec un fils ou une fille adulte ayant une déficience intellectuelle sur la transition de l’après-parents. Canadian Journal on Aging / La Revue canadienne du vieillissement 38:4, pages 468-480.
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Whitney D. Taylor, Virginie Cobigo & Hélène Ouellette‐Kuntz. (2019) A family systems perspective on supporting self‐determination in young adults with intellectual and developmental disabilities. Journal of Applied Research in Intellectual Disabilities 32:5, pages 1116-1128.
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Elyse Perry, Rebecca Waters & Angus Buchanan. (2019) Experiences of National Disability Insurance Scheme planning from the perspective of adults with intellectual disability. Australian Journal of Social Issues 54:3, pages 210-223.
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Pádraic Fleming, Sinead McGilloway, Marian Hernon, Mairead Furlong, Siobhain O'Doherty, Fiona Keogh & Tim Stainton. (2019) Individualized funding interventions to improve health and social care outcomes for people with a disability: A mixed‐methods systematic review. Campbell Systematic Reviews 15:1-2.
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Emily J Steel. (2019) The Duplicity of Choice and Empowerment: Disability Rights Diluted in Australia’s Policies on Assistive Technology. Societies 9:2, pages 39.
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Moller, Schneider & Steel. (2019) Spotlight on Siblings: Considering Social Context in Home Modification Practice. Societies 9:2, pages 30.
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Lynda AtackJudy VerseghyJanet MaherMarilyn HerieMatthew PoirierFrances MacNeilMichelle Grimley. (2019) An Emerging Model for Semi-Independent Living for Persons With Intellectual and Developmental Disabilities. Inclusion 7:1, pages 57-70.
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Вікторія Оверчук. (2019) Особливості підтримуваного працевлаштування молоді із синдромом Дауна: психологічний аспект. Теоретичні і прикладні проблеми психології:3(50)T3, pages 241-255.
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Haris Memisevic & Mirjana Djordjevic. 2019. Handbook of Intellectual Disabilities. Handbook of Intellectual Disabilities 91 107 .
Melissa Brown, Melissa Harry & Kevin Mahoney. (2018) “It's Like Two Roles We're Playing”: Parent Perspectives on Navigating Self‐Directed Service Programs with Adult Children with Intellectual and/or Developmental Disabilities. Journal of Policy and Practice in Intellectual Disabilities 15:4, pages 350-358.
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Derek Nord, Kristin Hamre, Sandra Pettingell & Louise Magiera. (2018) Employment Goals and Settings: Effects of Individual and Systemic Factors. Research and Practice for Persons with Severe Disabilities 43:3, pages 194-206.
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Vanessa VEGA, Izaskun ÁLVAREZ & Cristina JENARO RÍO. (2018) Autodeterminación: explorando las autopercepciones de adultos con síndrome de Down chilenos. Siglo Cero. Revista Española sobre Discapacidad Intelectual 49:2, pages 89.
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Bernadette CurryerRoger J. StancliffeAngela DewMichele Y. Wiese. (2018) Choice and Control Within Family Relationships: The Lived Experience of Adults With Intellectual Disability. Intellectual and Developmental Disabilities 56:3, pages 188-201.
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G. Gallego, A. Dew, M. Lincoln, A. Bundy, K. Bulkeley, J. Brentnall & C. Veitch. (2018) Carers' preferences for the delivery of therapy services for people with disability in rural Australia: evidence from a discrete choice experiment. Journal of Intellectual Disability Research 62:5, pages 371-381.
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Andrea Hollomotz. (2017) Successful interviews with people with intellectual disability. Qualitative Research 18:2, pages 153-170.
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Roy McConkey, Fiona Keogh, Brendan Bunting & Edurne Garcia Iriarte. (2017) Changes in the self-rated well-being of people who move from congregated settings to personalized arrangements and group home placements. Journal of Intellectual Disabilities 22:1, pages 49-60.
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Linda GilmoreMonica Cuskelly. (2017) Associations of Child and Adolescent Mastery Motivation and Self-Regulation With Adult Outcomes: A Longitudinal Study of Individuals With Down Syndrome. American Journal on Intellectual and Developmental Disabilities 122:3, pages 235-246.
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Roy McConkey, Fiona Keogh, Brendan Bunting, Edurne Garcia Iriarte & Sheelah Flatman Watson. (2016) Relocating people with intellectual disability to new accommodation and support settings. Journal of Intellectual Disabilities 20:2, pages 109-120.
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Padraic Fleming, Mairead Furlong, Sinead McGilloway, Fiona Keogh, Marian Hernon & Tim Stainton. (2016) PROTOCOL: Personal Budgeting Interventions to Improve Health and Social Care Outcomes for People with a Disability: A Systematic Review. Campbell Systematic Reviews 12:1, pages 1-73.
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Araceli ARELLANO TORRES & Feli PERALTA LÓPEZ. (2015) Autodeterminación personal y discapacidad intelectual: un análisis desde la perspectiva de las familias. Siglo Cero. Revista Española sobre Discapacidad Intelectual 46:3, pages 7.
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