A random sample of parents of children with disabilities (n = 144) from three Swedish municipalities participated in a structured telephone interview including seven questions on child participation and 156 professionals from the same municipalities completed a web-based survey including six questions on child participation. The aim of the study was to explore parents’ and professionals’ (1) ratings of the opportunities available to children with disabilities to participate in planning, decision-making and evaluation of support and (2) satisfaction with the children’s current level of such participation. The results indicated that opportunities for children with disability to participate directly in decision-making processes were limited. Parents and professionals rated older children’s opportunities to participate as better compared to younger. Most professionals relied more on parents’ descriptions of the child’s needs and opinions of support services than on direct communication with the child.
AlmqvistLGranlundM (2005) Participation in school environment of children and youth with disabilities: a person-oriented approach. Scandinavian Journal of Psychology46(3): 305–314. DOI: 10.1111/j.1467-9450.2005.00460.x.
2.
AtwoolN (2006) Participation in decision-making: the experience of New Zealand children in care. Child Care in Practice12(3): 259–267. DOI: 10.1080/13575270600761727.
3.
AxelssonAKImmsCWilderJ (2014) Strategies that facilitate participation in family activities of children and adolescents with profound intellectual and multiple disabilities: parents’ and personal assistants’ experiences. Disability and Rehabilitation36(25): 2169–2177. DOI: 10.3109/09638288.2014.895058.
CavetJSloperP (2004) Participation of disabled children in individual decisions about their lives and in public decisions about service development. Children & Society18(4): 278–290. DOI: 10.1002/CHI.803.
CobbBAlwellM (2009) Transition planning/coordinating interventions for youth with disabilities: a systematic review. Career Development and Transition for Exceptional Individuals. Available at: http://cde.sagepub.com/content/early/2009/07/01/0885728809336655.short (accessed 15 July 2016).
8.
CobbBLehmannJNewman-GoncharR, et al. (2009) Self-determination for students with disabilities. Career Development and Transition for Exceptional Individuals32(2): 108–114. DOI: 10.1177/0885728809336654.
DeviNBickenbachJStucki (2011) Moving towards substituted or supported decision-making? Article 12 of the Convention on the Rights of Persons with Disabilities. ALTER - European Journal of Disability Research / Revue Européenne de Recherche Sur Le Handicap5(4): 249–264. DOI: 10.1016/j.alter.2011.07.002.
DunstCJBruderMBTrivetteC, et al. (2001) Characteristics and consequences of everyday natural learning opportunities. Topics in Early Childhood Special Education21(2): 68–92.
13.
ErikssonLWelanderJGranlundM (2007) Participation in everyday school activities for children with and without disabilities. Journal of Developmental and Physical Disabilities19(5): 485–502. DOI: 10.1007/s10882-007-9065-5.
14.
FranklinASloperP (2006) Participation of disabled children and young people in decision-making within social services departments: a survey of current and recent activities in England. British Journal of Social Work36(5): 723–741. DOI: 10.1093/bjsw/bch306.
15.
FranklinASloperP (2009) Supporting the participation of disabled. Children and young people in decision-making. Children & Society23(1): 3–15. DOI: 10.1093/bjsw/bch306.
16.
GabeJOlumideGBuryM (2004) It takes three to tango. Social Science & Medicine59(5): 1071–1079. DOI: 10.1016/j.socscimed.2003.09.035.
17.
GriffinMMTaylorJLUrbanoRC, et al. (2014) Involvement in transition planning meetings among high school students with autism spectrum disorders. The Journal of Special Education47(4): 256–264. DOI: 10.1177/0022466913475668.
18.
HammelJMagasiSHeinemannA, et al. (2008) What does participation mean? An insider perspective from people with disabilities. Disability and Rehabilitation30(19): 1445–1460. DOI: 10.1080/09638280701625534.
19.
HeldMFThomaCAThomasK (2004) “The john jones show”: how one teacher facilitated self-determined transition planning for a young man with autism. Focus on Autism and Other Developmental Disabilities19(3): 177–188. DOI: 10.1177/10883576040190030501.
20.
HodgeS (2007) Why is the potential of augmentative and alternative communication not being realized? Exploring the experiences of people who use communication aids. Disability & Society22(5): 457–471. DOI: 10.1080/09687590701427552.
21.
HögbergB (2007) Planning as a social process: about participation and what is best for children (Planering som social process: Om delaktighet och barnets bästa) Lund. Studentlitterature AB.
KellyB (2010) Disabled children as active citizen. Child Care in Practice8(3): 220–222. DOI: 10.1080/1357527022000048941.
24.
KellyB (2005) “Chocolate makes you autism”: impairment, disability and childhood identities. Disability and Society20(3): 261–275. DOI: 10.1080/09687590500060687.
25.
KnightAOliverC (2007) Advocacy for disabled children and young people: benefits and dilemmas. Child & Family Social Work12(4): 417–425. DOI: 10.1111/j.1365-2206.2007.00500.x.
26.
MartinJEVan DyckeJLGreeneB, et al. (2006) Direct observation of teacher-directed IEP meetings: establishing the need for student IEP meeting instruction. Exceptional Children72(2): 187–200. DOI: 10.1177/0885728810368056.
27.
McNeillyPMacdonaldGKellyB (2015) The participation of disabled children and young people: a social justice perspective. Child Care in Practice21(3): 521–527. DOI: 10.1080/13575279.2015.1014468.
28.
MitchellWFranklinAGrecoV, et al. (2009) Working with children with learning disabilities and/or who communicate non-verbally: research experiences and their implications for social work education, increased participation and social inclusion. Social Work Education28(3): 309–324.
29.
MorrisC (2009) Measuring participation in childhood disability: how does the capability approach improve our understanding?Developmental Medicine & Child Neurology51(2): 92–94. DOI: 10.1111/j.1469-8749.2008.03248.x.
30.
MurrayR (2015) “Yes they are listening but do they hear us?” Reflections on the journey of the Barnardo’s participation project. Child Care in Practice21(1): 78–90. DOI: 10.1080/13575279.2014.973370.
31.
RabieePSloperPBeresfordB (2005) Doing research with children and young people who do not use speech for communication. Children & Society19(5): 385–396. DOI: 10.1002/chi.841.
32.
ShemmingsD (2000) Professionals’ attitudes to children’s participation in decision-making: dichotomous accounts and doctrinal contests. Child & Family Social Work5(3): 235–243.
33.
SinclairJ (2004) Participation in practice: making it meaningful, effective and sustainable. Children & Society18(2): 106–118. DOI: 10./1002/chi.817.
34.
StenhammarAM (2009) Listen to Me: Children and Youth with Disabilities Want to Participate in Meeting with the Society’s Service Systems. Halmstad, Sweden: Högskolan i Halmstad.
35.
The Act concerning Support and Service for Individuals with Certain Functional Impairments, Pub. L. No. SFS 1993:387 (1993).
36.
The Children and Parents Code (1949).
37.
The Education Act, 10:165 (2009).
38.
The Health Service Act, 1982:763 (1982).
39.
The Social Insurance Act 1999, Pub. L. No. 1999:799 (1999).
40.
The Social Service Act, Pub. L. No. SFS 2001:453, SFS 2001:453 (2001).
WagnerMNewmanLCametoR, et al. (2012) A national picture of parent and youth participation in IEP and transition planning meetings. Journal of Disability Policy Studies23(3): 143–155. DOI: 10.1177/1044207311425384.
46.
WikströmEFägerskiöldAM (2007) A review of children’s decision-making competence in health care (PDF Download Available). Journal of Clinical Nursing17(23): 3131–3141. DOI: 10.1111/j.1365-2702.2006.01920.x.
47.
YoungBDixon-WoodsMWindridgeKC, et al. (2003) Managing communication with young people who have a potentially life threatening chronic illness: qualitative study of patients and parents. The British Medical Journal326(7384): 305–310. DOI: 10.1136/bmj.326.7384.305.
