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The risk of re-institutionalization: examining rates of admission to long-term care among adults with intellectual and developmental disabilities over time
- Authors:
- OUELLETTE-KUNTZ Helene, MARTIN Lynn, McKENZIE Katherine
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 14(4), 2017, p.293–297.
- Publisher:
- Wiley
Despite efforts toward community living for persons with intellectual and developmental disabilities, there is a risk of re-institutionalisation through placement in long-term care facilities. To examine patterns of admission to long-term care facilities in Ontario, Canada among adults with intellectual and developmental disabilities across key demographic and clinical variables, a cohort of 50 670 adults with intellectual and developmental disabilities was identified using administrative and clinical health data. Proportions admitted to long-term care facilities between 2009 and 2013 were compared to proportions in a random sample of the general population. A greater proportion of adults with intellectual and developmental disabilities were admitted to long term care over the 4-year period (4.5 vs. 0.9%). Mental health and addiction problems as well as frailty were more strongly associated with admission among adults without intellectual and developmental disabilities. The proportion of adults with intellectual and developmental disabilities admitted annually dropped from 1.6% (2009/10) to 1% (2012/13) while it remained stable among those without disabilities (∼0.3%); no change was observed in the proportion of younger adults with intellectual and developmental disabilities. A small proportion of younger adults with intellectual and developmental disabilities continue to be admitted to long-term care. Research is needed to understand factors which predict admission in this group as well as age-appropriate alternatives to long-term care. (Publisher abstract)
The power of population health data on aging and intellectual and developmental disabilities: reactions of knowledge users
- Authors:
- MARTIN Lynn, OUELLETTE-KUNTZ Helene, McKENZIE Katherine
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 14(4), 2017, p.268–278.
- Publisher:
- Wiley
Recent work in Ontario (Canada) revealed that adults with intellectual and developmental disabilities experience higher rates of frailty and use of ageing care services at earlier ages than the general population, and that the subset aged 65+ years is increasing. This paper describes the reaction of knowledge users to study findings and implications for policy and practice. A knowledge transfer webinar was held with nearly 200 people representing different regions of the province, participant types (family members, service providers, decision makers, researchers), and sectors (health and developmental services). Most participants viewed health and developmental services systems as not ready for the ageing population with intellectual and developmental disabilities for two main reasons: insufficient cross-sector expertise and inadequate funding. The need for healthcare, challenged informal supports, lack of services, and the desire for independence were thought to drive higher use of home care among younger adults, while inadequacies within the developmental services sector, challenged informal supports, medical and care needs, lack of community supports, and the need for coordinated cross-sector services were noted as contributing to admissions to long-term care. There is a lack of evidence-based information on ageing and intellectual and developmental disabilities. Ongoing access to quality, population-level data on the number and needs of persons with intellectual and developmental disabilities is needed to improve policies and practices to support ageing in the community. Persons working in health and developmental services had a shared understanding of the need for system reform, better collaboration, and integration of resources. Both sectors also viewed admission to long-term care as particularly problematic. The province-wide webinar brought together persons with various levels of responsibility from different sectors. Future exchanges should focus on identifying and promoting best practices. (Edited publisher abstract)
Care in the community: home care use among adults with intellectual and developmental disabilities over time
- Authors:
- MARTIN Lynn, OUELLET-KUNTZ Helene, McKENZIE Katherine
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 14(3), 2017, pp.251-254.
- Publisher:
- Wiley
Community-based healthcare services have quickly evolved over the last few decades to respond to the growing population of older adults, and their desire to remain independent in the community. In Ontario, Canada, deinstitutionalization has resulted in all persons with intellectual and developmental disabilities living and ageing, in the community. This paper compares use of home care services in Ontario among adults (age 18–99 years) with and without intellectual and developmental disabilities over time. Home care use over a 5-year period was compared between a cohort of 46,008 adults with intellectual and developmental disabilities and a random sample of 3,272,080 adults without intellectual and developmental disabilities. Persons with and without intellectual and developmental disabilities received similar types of home care services. Adults with intellectual and developmental disabilities had much higher rates of admission to home care, and at much earlier ages. While this remained true over time, slight differences by age were noted between groups. Higher use at earlier ages suggests that home care services are responding to the needs of adults with intellectual and developmental disabilities. Future research should identify (or develop) best practices for promoting independence in the community for adults with intellectual and developmental disabilities with healthcare needs. (Edited publisher abstract)
Out of school and into distress: families of young adults with intellectual and developmental disabilities in transition
- Authors:
- McKENZIE Katherine, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 30(4), 2017, p.774–781.
- Publisher:
- Wiley
Background: The transition period out of the educational system can be a source of stress for parents of young adults with intellectual and developmental disabilities, as families lose the support and respite offered by schools. Materials and Methods: Using a before and after design nested within a 24-month follow-up study of parents seeking adult developmental services for their children, parents' perception of distress was measured using the Brief Family Distress Scale (Journal of Child and Family Studies, 20, 2011, 521) and their perception of helpfulness of formal supports was assessed using the Family Support Scale (Journal of Individual, Family, and Community Wellness, 1, 1984, 45). Results: Parents reported significantly higher levels of distress after their child transitioned out of school. Employed parents and parents of a child with an autism spectrum disorder are at increased risk for distress. Conclusions: Families fare worse once their adult children are no longer in school, although this is not associated with a reduction in the perception of the helpfulness of formal supports. (Publisher abstract)
Applying a general measure of frailty to assess the aging related needs of adults with intellectual and developmental disabilities
- Authors:
- McKENZIE Katherine, OUELLETTE-KUNTZ Helene, MARTIN Lynn
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 14(2), 2017, pp.124-128.
- Publisher:
- Wiley
Adults with intellectual and developmental disabilities often experience premature ageing and high levels of frailty. Frailty characterises health complexities and identifies adults with increased risks for adverse outcomes. This paper compared the prevalence of frailty amongst adults (aged 18-99 years) with and without intellectual and developmental disabilities. Frailty was measured using the Frailty Marker, based on the Adjusted Clinical Groups-Predicative Model, and was compared between a cohort of 51,138 adults with intellectual and developmental disabilities and a random sample of 3,272,080 adults without intellectual developmental disabilities. Approximately 9% of persons with intellectual and developmental disabilities were frail, compared to only 3% of persons without intellectual and developmental disabilities. Women, older adults, and adults with mental illness or addiction(s), were more likely to be frail. Adults with intellectual and developmental disabilities are increasingly vulnerable as they age. However, to appropriately characterise frailty in this population, measures should be more inclusive of health characteristics and fluctuations that are related to frailty. Future research should investigate alternative measures of frailty for persons with intellectual and developmental disabilities, including measures derived from standardised health assessments, to meet the needs of the ageing population. (Edited publisher abstract)