Acquiring medical services for individuals with mental retardation in community-based housing facilities

Diagnosis and management of Cornelia de Lange syndrome: first international consensus statement

“…They are more likely to experience delayed treatment, to be hospitalized and to have more complications and longer admissions than individuals without CdLS owing to lack of knowledge regarding CdLS by caregivers, difficulties in obtaining a reliable earlier history and, possibly, stigmatization. The use of syndrome-specific, individualized treatment plans, including regular health checks, planning of admissions and discharges in advance, and the use of procedurespecific information booklets using simple language and photos are recommended 188,189 (R66, R67).…”

Discrimination and Other Barriers to Accessing Health Care: Perspectives of Patients with Mild and Moderate Intellectual Disability and Their Carers

“…They have highlighted barriers to accessing health care, including: communication difficulties, resulting from individuals with intellectual disability being excluded from consultations [7], [8], [9], failure of General Practitioners (GPs) to conduct health reviews, review medication and conduct blood tests and investigations [10], lack of health promotion and screening [10], [11], [12] and inadequate knowledge of doctors about the health needs of people with intellectual disability [7], [12], [13], [14], which has contributed to diagnostic overshadowing [9], [14], [15], [16]. Diagnostic overshadowing occurs where signs and symptoms arising from physical or mental health problems are misattributed to the individual's intellectual disability, and can lead to delayed diagnosis and treatment.…”

“…Several studies concluded that patients with intellectual disability received suboptimal care, and were denied appropriate treatment [7], [9], [13]. Health professionals frequently exhibited negative attitudes and behaviour towards individuals with intellectual disability [7], [15], [16], including questioning whether the person was worthy of surgical treatment, due to discriminatory judgements about the person's quality of life [16], [19].…”

Primary healthcare interventions for people with intellectual disability

“…Poor service coordination and disjointed care all pose as barriers (Fisher et al, 2005). These administrative and systemic barriers may result in challenging behaviours and this adds additional stress, which may also have long-term repercussions on willingness to visit the GP .…”

“…In general, caregivers may have received insufficient health education and training in the specialised health needs of people with ID, and they may experience high stress, low motivation, poor confidence and high levels of burnout (Braddock et al, 2001;CollegeGrad LLC., 2015;Developmental Disability Unit., 2002;Fisher et al, 2005;Rose J., 1993;Rose J., 1995;Sharrard H.;1992;Taggart et al, 2011;The Centre for Developmental Disability Health Victoria, 2014;Thomson S., 1987). Whilst the relationship between stress and challenging behaviours is unclear, challenging behaviours are commonly experienced by caregivers who support people with ID (Hensel, Lunsky, & Dewa, 2012).…”