Addressing Age-Related Complexity in Intellectual Disability – AARC-ID: An economic analysis of different support models

Background on Project

As people with intellectual disability age, it may mean living with age-related morbidities which require specialist care to meet needs. While most people with intellectual disability would prefer to remain living in their current homes, if extra supports are not available, they may experience a need to move into residential type settings such as nursing homes. This is usually related to current funding systems not being responsive to developing age-related needs of people with intellectual disability. For example, if a person had been living independently but they are developing mobility issues, there is often no extra budget for staff to assist them. This can result in the person having to move to a different setting to have their needs met. However, such a move may impact on quality of life, wellbeing and personal dignity.

The AARC-ID study will build a picture of the future needs of people who are ageing with intellectual disability, what extra supports they require, and the costs of those supports. This will be completed using two secondary data sources– the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) and the National Ability Support System (NASS), as well as collecting primary qualitative data to understand perspectives and experiences.

The overall aim of the study is to provide economic evidence on the needs, resources and outcomes associated with supporting people aged ≥40 with intellectual disability to age in place.

The objectives of the project are to:

• Estimate the total volume of support need at the population level up to 2034

• Estimate the costs and outcomes associated with different models of support for individuals with varying support needs

• Estimate the costs and outcomes associated with meeting population-level needs from 2024-2034 under different funding scenarios for models of support

• Elicit perspectives of older people with intellectual disability, their families and caregivers, and service providers on the different models of support, and identifying additional needed changes to the mix of available services

This project collaborates with colleagues from the Centre for Health Policy and Management (School of Medicine, TCD), the National Federation of Voluntary Service Providers, the Trinity Centre for Practice and Healthcare Innovation (School of Nursing & Midwifery, TCD), Health Service Executive, Temple University USA, and Maynooth University.

Recruitment

The focus group will allow people to share insight into their experiences of providing care and services to older adults with intellectual disability. The interview/focus group will look at the changing needs of adults as they age, to identify existing supports which address these needs and what additional supports are necessary to provide adequate support to those with intellectual disabilities. Research such as this ensures that the perspectives of carers and professionals are included in national planning, and that people with intellectual disability are treated with equity and dignity as they age.

If you are interested in taking part in this important project and meet the eligibility criteria, you can reach out and contact Professor Martin McMahon for further information