Gray K M, Piccinin A, Keating C M, Taffe J, Parmenter T R, Hofer S, Einfeld S L, Tonge B J
Centre for Developmental Psychiatry & Psychology, School of Psychology & Psychiatry, Monash University, Melbourne, Vic., Australia.
J Intellect Disabil Res. 2014 Aug;58(8):734-45. doi: 10.1111/jir.12069. Epub 2013 Jul 19.
Despite recognition of the importance of integrated community living and support, there is evidence that parents remain the primary caregivers of young adults with intellectual disability (ID). In addition, employment rates remain low in this population. This study aimed to investigate the changes in living arrangements and participation in daytime activities over time in a community population of young people with ID.
The sample consisted of 536 participants aged 4.0-18.9 years at Wave 1, followed up at Wave 5 when aged 20.5-37.6 years. Information was collected on their living arrangements and daytime activities at both time points, along with living skills and information on community social inclusion at Wave 5. For parents still caring for their adult child with ID, information was also collected on parental ratings of their own mental and physical health, and their satisfaction with the long-term care arrangements for their adult child.
A significant proportion of young people were still living with their parents at Wave 5. A greater proportion of those with a severe-profound degree of ID were living in residential care. Parents caring for their adult child reported high levels of mental health problems and dissatisfaction with the long-term care arrangements for their child. A small proportion of young people were in paid employment, and the majority was engaged in structured activities provided for those with an ID. Over one-third of the sample participated in a structured daytime activity for 10 or fewer hours per week, and 7% were not engaged in any structured daytime activity.
These results suggest that adequate provision of accommodation and employment services for young adults with an ID is lacking. In many cases the responsibility of care continues to reside with parents as their children transition from childhood to adulthood. Greater attention is needed to address these issues and facilitate social inclusion and integration for young people with ID.
尽管认识到社区综合生活与支持的重要性，但有证据表明，父母仍是智障青年的主要照料者。此外，该人群的就业率仍然很低。本研究旨在调查智障青年社区人群的生活安排和日间活动参与情况随时间的变化。
样本包括536名在第1波时年龄为4.0 - 18.9岁的参与者，在第5波时进行随访，当时年龄为20.5 - 37.6岁。在两个时间点收集了他们的生活安排和日间活动信息，以及第5波时的生活技能和社区社会融合信息。对于仍在照料成年智障子女的父母，还收集了他们对自身身心健康的评分以及对成年子女长期照料安排的满意度信息。
在第5波时，仍有相当比例的年轻人与父母同住。重度至极重度智障者中，有更大比例居住在寄宿照料机构。照料成年子女的父母报告称，他们存在较高程度的心理健康问题，且对子女的长期照料安排不满意。一小部分年轻人有带薪工作，大多数人参加了为智障者提供的结构化活动。超过三分之一的样本每周参加结构化日间活动的时间为10小时或更少，7%的人未参加任何结构化日间活动。
这些结果表明，为智障青年提供充足的住宿和就业服务存在不足。在许多情况下，随着子女从童年过渡到成年，照料责任仍由父母承担。需要更加关注这些问题，促进智障青年的社会包容与融合。
