Children with intellectual disability experience a higher prevalence of dental disease, obesity, challenging behaviours, and mental health disorders compared to children without intellectual disability. Children with intellectual disability concurrently face health and social service navigational barriers that are associated with unresolved health needs and hospital admissions, and parent burnout and employment interruptions. In this study, we explored the knowledge gap of how carers and governmental agencies, providing services, understand intellectual disability using discourse analysis, and a theoretical framework applying Deleuze and Guattari’s concepts of the rhizome and stratification. We found that children with intellectual disability were stratified into eligible or ineligible service recipients through the diagnostic process that prioritized specified characteristics. Carers did not perceive that their children’s unique characteristics and needs were accounted for within the diagnostic process and expressed feelings of being dismissed by clinicians and providers in decision-making about priority needs and services.
American Psychiatric Association (2013) Diagnostic and Statistical Manual of Mental Disorders. Arlington: American Psychiatric Publishing.
3.
BakerDLMillerEDangMT, et al. (2010) Developing culturally responsive approaches with Southeast Asian American families experiencing developmental disabilities. Pediatrics126(Suppl 3): S146–S150.
4.
BaloghRBrownellMOuellette-KuntzH, et al. (2010) Hospitalization rates for ambulatory care sensitive conditions for people with and without an intellectual disability- a population perspective. Journal of Intellectual Disability Research54: 820–832.
5.
BaloghRHunterDOuellette-KuntzH (2005) Hospital utilization among persons with an intellectual disability, Ontario, Canada, 1995-2001. Journal of Applied Research in Intellectual Disabilities18: 181–190.
6.
BetzCLBaerMTHaddadY, et al. (2004) Secondary analysis of primary and preventive services accessed and perceived service barriers by children with developmental disabilities and their families. Issues in Comprehensive Pediatric Nursing27: 83–106.
7.
BogenschutzM (2014) “We find a way”: challenges and facilitators for health care access among immigrants and refugees with intellectual and developmental disabilities. Medical Care52: S64–S70.
8.
BreauGBaumbuschJThorneS, et al. (2019) Primary care providers’ attitudes towards individuals with intellectual disability: associations with experience and demographics. Journal of Intellectual Disabilities. Epub ahead of print, 4 July 2019. https://doi.org.1177/1744629519860029.
9.
BreauLAstonMMacLoedE (2018) Education creates comfort and challenges stigma towards children with intellectual disabilities. Journal of Intellectual Disabilities22: 18–32.
CreswellJ (2013) Qualitative Inquiry & Research Design. Los Angeles, CA: SAGE.
12.
DeleuzeGGuattariF (2011) A Thousand Plateaus: Capitalism and Schizophrenia. Minneapolis: University of Minnesota Press.
13.
Diéguez-PérezMde Nova-GarciaMMourelle-MartinezM, et al. (2016) Oral health in children with physical (Cerebral Palsy) and intellectual (Down Syndrome) disabilities: systematic review I. Journal of Clinical and Experimental Dentistry8: e337–e343.
14.
DoigJMcLennanJUrichukL (2009) ‘Jumping through hoops’: parents’ experiences with seeking respite care for children with special needs. Child: Care, Health, and Development35: 234–242.
15.
EinfeldSLEllisLEmersonE (2011) Comorbidity of intellectual disability and mental disorder in children and adolescents: a systematic review. Journal of Intellectual and Developmental Disability36: 137–143.
16.
EmersonE (2003) Prevalence of psychiatric disorders in children and adolescents with and without intellectual disability. Journal of Intellectual Disability Research47: 51–58.
17.
EmersonEBlacherJEinfeldS, et al. (2014) Environmental risk factors associated with the persistence of conduct difficulties in children with intellectual disabilities and autistic spectrum disorders. Research in Developmental Disabilities35: 3508–3517.
18.
FoucaultM (1980) Power/Knowledge. New York, NY: Vintage Books.
19.
FreemanHRodriguezR (2011) History and principles of patient navigation. Cancer117: 3537–3540.
20.
GuestGMacQueenKNameyE (2012) Applied Thematic Analysis. Los Angeles, CA: SAGE.
21.
HanlonPAllanLCooperS, et al. (2018) Long-term condition management in adults with intellectual disability in primary care: a systematic review. British Journal of General Practice2: 1–11.
22.
HarringtonCKangT (2016) Disparities in service use and expenditures for people with intellectual and developmental disabilities in California in 2005 and 2013. Intellectual & Developmental Disabilities54: 1–18.
23.
HookD (2001) The ‘disorders of discourse’. Theoria97: 41–68.
24.
Hughes-McCormackLRydzewskaECooperSA (2017) Prevalence of mental health conditions and relationship with general health in a whole-country population of people with intellectual disabilities compared with the general population. BJPsych Open3: 243–248.
25.
JagerSMaierF (2009) Theoretical and methodological aspects of Foucauldian critical discourse analysis and dispositive analysis. In: WodakRMeyerM (eds) Methods of Critical Discourse Analysis. 2nd ed. Los Angeles, CA: SAGE, pp. 34–61.
26.
JonesJMcQueenMLoweS, et al. (2015) Interprofessional education in Canada: addressing knowledge, skills, and attitudes concerning intellectual disability for future healthcare professionals. Journal of Policy and Practice in Intellectual Disabilities12: 172–180.
27.
KhanlouNMustafaNVazquezL, et al. (2017) Mothering children with developmental disabilities: a critical perspective on health promotion. Health Care for Women International38: 613–634.
28.
KiernanJMitchellDStansfieldJ, et al. (2017) Mothers’ perspectives on the lived experience of children with intellectual disability and challenging behaviour. Journal of Intellectual Disabilities23: 175–189.
29.
KraussMGulleySSciegajM, et al. (2003) Access to speciality medical care for children with mental retardation, autism, and other special health care needs. Mental Retardation41: 329–339.
30.
Legislative Assembly of Ontario (2011) Services and supports to support the social inclusion of persons with developmental disabilities act, 2008. Bill 77 – Assented July 1, 2011. Toronto: Queen’s Printer for Ontario.
31.
Legislative Assembly of Ontario (2014) Select Committee on Developmental Services: Final Report. Toronto: Queen’s Park, i–29.
32.
LindlyOJSincheBZuckermanKE (2015) Variation in educational services receipt among US children with developmental conditions. Academic Pediatrics15: 534–543.
33.
LindlyOJChavezAEZuckermanKE (2016) Unmet health services needs among US children with developmental disabilities: associations with family impact and child functioning. Journal of Developmental and Behavioral Pediatrics37: 712–723.
34.
LiptakGOrlandoMYinglingJ, et al. (2006) Satisfaction of primary care received by children with developmental disabilities. Journal of Pediatric Healthcare20: 245–252.
35.
MadillAJordanAShirleyC (2000) Objectivity and reliability in qualitative analysis: realist, contextualist and radical constructionist epistemologies. British Journal of Psychology91: 1–20.
36.
MaïanoCHueOMorinA, et al. (2016) Prevalence of overweight and obesity among children and adolescents with intellectual disabilities: a systematic review and meta-analysis. Obesity Reviews17: 599–611.
37.
MarstonG (2004) Social Policy and Discourse Analysis: Policy Change in Public Housing. Burlington: Ashgate.
38.
MayT (2011) Foucault’s conception of freedom. In: TaylorD (ed.) Michel Foucault: Key Concepts. Durham: Acumen Publishing Limited, pp. 71–83.
39.
McGrathJAStranskyMCooleyW, et al. (2011) National profile of children with Down syndrome: disease burden, access to care, and family impact. The Journal of Pediatrics159: 535–540.
40.
McGrathRJLaflammeDJSchwartzAP, et al. (2009) Access to genetic counseling for children with autism, Down syndrome, and intellectual disabilities. Pediatrics124(Suppl 4): S443–449.
41.
McManusBCarleAAcevedo-GarciaD, et al. (2011) Modelling the social determinants of caregiver burden among families of children with developmental disabilities. American Journal on Intellectual and Developmental Disabilities116: 246–260.
42.
MessageK (2010) Stratification. In: ParrA (ed.) The Deleuze Dictionary. Edinburgh: Edinburgh University Press, pp. 272–274.
43.
Ministry of Child and Youth Services MoCaSS, Ministry of Education, Ministry of Health and Long Term Care (2017) Coordinated Service Planning: Policy and Program Guidelines. Toronto: Queen’s Printer for Ontario, pp. 1–46.
44.
Ministry of Child and Youth Services (2015) Community-based Child and Youth Mental Health Program Guidelines and Requirements #01: Core Services and Key Processes. Toronto: The Queen’s Printer for Ontario, pp. 1–40.
45.
Ministry of Community and Social Services (2012) From Institutional to Community Living: A History of Developmental Services in Ontario. Available at: http://www.mcss.gov.on.ca/en/dshistory/ (accessed 11 January 2020).
46.
MinnesPSteinerK (2009) Parent views on enhancing the quality of health care for their children with fragile X syndrome, autism or Down syndrome. Child: Care, Health, and Development35: 250–256.
47.
NageswaranSParishSLRoseRA, et al. (2011) Do children with developmental disabilities and mental health conditions have greater difficulty using health services than children with physical disorders?Maternal & Child Health Journal15: 634–641.
48.
Ouellette-KuntzHGarcinNLewisM, et al. (2005) Addressing health disparities through promoting equity for individuals with intellectual disability. Canadian Journal of Public Health96: S8–22.
49.
Parent Resource Centre (2014) EDI: Stormont, Dundas, and Glengarry. Ottawa.
50.
PhelpsRAPinterJDLollarDJ, et al. (2012) Health care needs of children with Down syndrome and impact of health system performance on children and their families. Journal of Developmental and Behavioral Pediatrics33: 214–220.
51.
PhillipsNHardyC (2002) Discourse Analysis: Investigating Processes of Social Construction. Thousand Oaks, CA: SAGE.
52.
PosterM (1989) Critical Theory and Poststructuralism: In Search of a Context. Ithaca: Cornell University Press.
53.
PotterJWetherellM (1987) Discourse and Social Psychology: Beyond Attitudes and Behaviours. London: SAGE.
54.
PowersP (2001) The Methodology of Discourse Analysis. Sudbury: Jones and Bartlett Publishers.
55.
ReichardASaccoTTurnbullH (2004) Access to health care for individuals with developmental disabilities from minority backgrounds. Mental Retardation42: 459–470.
SchleienSJMillerKDWaltonG, et al. (2014) Parent perspectives of barriers to child participation in recreational activities. Therapeutic Recreation Journal48: 61–73.
58.
SegalMEliasziwMPhillipsS, et al. (2016) Intellectual disability is associated with increased risk for obesity in a nationally representative sample of U.S. children. Disability and Health Journal9: 392–398.
59.
ShooshtariSBrownellMMillsR, et al. (2017) Comparing health status, health trajectories and use of health and social services between children with and without developmental disabilities: a population-based longitudinal study in Manitoba. Journal of Applied Research in Intellectual Disabilities30: 584–601.
60.
SonJDebonoDLeitnerR, et al. (2019) Pass the parcel: service provider views on bridging gaps for youth with dual diagnosis of intellectual disability and mental healthdisorders in regional areas. Journal of Pediatrics and Child Health55: 666–672.
61.
Statistics Canada (2011) Census Profile: Stormont, Dundas, and Glengarry
62.
TaylorJHenningerN (2015) Frequency and correlates of service access among youth with autism transitioning to adulthood. Journal of Autism & Developmental Disorders45: 179–191.
63.
TempleBMurdockE (2012) Nursing student perceptions of disability and preparation to care for people with intellectual disabilities. Journal of Nursing Education51: 407–410.
64.
VohraRMadhavanSSambamoorthiU, et al. (2014) Access to services, quality of care, and family impact for children with autism, other developmental disabilities, and other mental health conditions. Autism: The International Journal of Research and Practice18: 815–826.
65.
WooffittR (2005) Conversational and Discourse Analysis. Thousand Oaks, CA: SAGE.
66.
World Health Organization (2019) International Statistical Classification of Diseases and Related Health Problems. Geneva: World Health Organization.
