Transition for Teenagers With Intellectual Disability: Carers' Perspectives

Abstract

Teenagers with intellectual disabilities (ID) have significantly more health problems than the rest of the population and many encounter difficulties accessing the services they need during the transition from children's to adult services. A multidisciplinary, interagency study was carried out in one area of the UK with the intent to estimate the number of teenagers with ID between the ages of 16 and 19, their levels of mental and physical healthcare needs, their carers' perceptions of the transition process to adult services and unmet needs, and to make recommendations on how to address unmet needs. A mapping exercise was carried out to identify all teenagers aged 16-19 with ID known to local services; a postal questionnaire was sent to carers of all eligible teenagers; and then in-depth interviews carried out with a sample of carers. Most of the teenagers had significant levels of ID, multiple problems, and required constant supervision. Most of the teenagers were using a range of health, social care and education services, however, their carers still reported unmet needs; half had difficulty in accessing services. Different patterns of service use and unmet needs were found among the various ethnic groups identified in the sample. Only about a quarter of the carers interviewed were satisfied with the transition process. Authors found that carers were concerned about the lack of information concerning transition planning and adult services, and wanted earlier, more coordinated transition planning. The data confirmed the need for quality information and validated standardized tools that could be used for transition planning. Recommendations are that integrated referral systems for health and social care need to be developed, with links to clear care pathways, and that individual and systemic outcomes should be monitored.

Interventions to promote physical activity for adults with intellectual disabilities

“…There has been concern expressed that the needs of young adults with intellectual disabilities are not adequately served by generic programming for individuals with intellectual disability. 21,22 For example, 11% of participants in the Bazzano and colleagues 23 study were 18-29 years and 25% were older than 50 years of age. However, it appeared that the same exercise videos were used by the peer mentors and it was unclear whether there was any individualization when participants used community facilities as part of the education sessions.…”

Transition to adult mental health services for young people with an intellectual disability

“…Additional recommendations to support optimal transition include: individualised timing for transition to ensure this is developmentally appropriate for the young person with ID; development of multi‐agency partnerships with clear roles for different services in transition; improved co‐ordination between services when planning transition, including systems for data exchange and knowledge transfer between agencies; improve knowledge of services offered by different agencies (e.g. health, mental health, disability) and awareness of inter‐agency eligibility criteria to ensure referrals are appropriate; involve mental health professionals in transition planning frameworks; and ensure the young person and his or her carers are satisfied with the transition plan …”

“…It is known that the mainstream workforce is generally ill equipped to meet the needs of people with ID . While specialised and cohesive multidisciplinary services for children and adolescents with ID exist, there is a lack of appropriate specialist services for adults with ID . For the individual and their family, this lack of workforce capacity can lead to difficulties in finding appropriate adult services, difficulties accessing services and risk of losing specialist involvement in care .…”

La transition de l’école à la vie adulte d’une élève ayant une déficience intellectuelle légère

“…Dans les écrits scientifiques, on considère que l'école devrait assumer un rôle de leader (Johnson, 2004), plus particulièrement la direction d'école, en s'assurant que tous les élèves sont engagés dans une démarche de transition (Dupont, 2009). Plusieurs auteurs recommandent que la planification de la transition commence dès l'âge de 14 ans (Bhaumik et al, 2011;Dupont, 2009;Zhang, Ivester, Chen, & Katsiyannis, 2005). C'est d'ailleurs une norme aux États-Unis, en Colombie-Britannique et en Ontario (Lorenz, 2011; Office des personnes handicapées du Québec, 2003).…”

“…Des travaux récents appuient l'importance d'une démarche de transition planifiée incluant tous les acteurs qui gravitent autour des élèves ayant une déficience intellectuelle, en prévision de leur passage à la vie adulte et de leur intégration socioprofessionnelle (Bhaumik et al, 2011;Brown, 2007;Goupil, Tassé, Boisseau, & Dansereau, 2003;Grigal, Hart, & Migliore, 2011;Landmark, Ju, & Zhang, 2010). Toutefois, ces démarches de transition sont peu systématisées (Office des personnes handicapées du Québec, 2003) et demeurent souvent des initiatives personnelles ou régionales, sans leadership assuré.…”