The Upside – Life in the Community
Did you know?
Inclusivity is wanted by the majority (86%); however only half believe that people with Down syndrome have the opportunity to be fully integrated into their wider community. Source: DSI Commissioned Empathy Survey (2021)
We all need a place to feel at home. We all need to be able to make choices about how we spend our days and how we live our lives. Communities which are diverse, listening to lots of different viewpoints are more likely to meet the needs of all their members.
People with Down syndrome, like anyone else, can be active members of their local community, getting involved with sports, leisure and community activities if given the chance. Making our communities accessible for people with Down syndrome is likely to also benefit other marginalised groups.
Did you know?
Many people believe that local amenities are not easily accessible for people with Down syndrome, especially when it comes to sports clubs/playgrounds and public transport (i.e. 56% and 57% respectively disagreed that amenities are easily accessible for people with Down syndrome). Source: DSI-commissioned Empathy Survey (2021)
Individualised Funding
In Ireland, disability services providers are funded to deliver personal, health and social care services and supports to people with disabilities. Often this is delivered through ‘bundled’ funding meaning the service receives funds to provide a service to 30 people, but if one person wants a different type of service their funding can’t be ‘unbundled’ which leaves individuals with no options or choice in how they receive supports.
Did you know?
60% of the public believe people should have the choice between using the services of a disability service provider or buying different supports if that is what they need and want, and nearly half (47%) of people agree that families of people with Down syndrome should have control over how their funding is spent. Source: DSI Commissioned Empathy Survey (2021)
Individualised funding, in various forms, is in existence internationally since the 1970’s. Despite this, people with intellectual disabilities in Ireland still have no widespread access to individualised funding. Individualised funding gives individuals and their families control over how they use their allocated funding. This fundamentally rebalances the power dynamic between people with disabilities and disability service providers, giving choice and control to people over the type of support they want and how and when they receive it.
The HSE is currently running a Personalised Budget Demonstration Projects Pilot. A HSE personalised budget can only be used to purchase ‘HSE funded specific personal supports’ which is very limiting. There is also no timeline for when the pilot evaluation will be completed or when HSE personalised budgets will be available as a choice for people who want this option. Down Syndrome Ireland has consistently lobbied for a broader, more holistic, application of individualised funding so individuals have more choice in how they spend their funding, being able to pay for things like transport, education, etc. can open up the world of employment for some and improve quality of life for others.
Did you know?
60% of the public believe people should have the choice between using the services of a disability service provider or buying different supports if that is what they need and want, and nearly half (47%) of people agree that families of people with Down syndrome should have control over how their funding is spent. Source: DSI Commissioned Empathy Survey (2021)
The Impact of COVID-19
The pandemic has highlighted that traditional disability services are not meeting the needs of people with disabilities. At the height of the crisis, day services closed with no alternative supports put in place. People with Down syndrome reported experiencing regression and mental health difficulties, while family careers described feeling abandoned, exhausted, and burnt out. Person-centered and individualised services are more flexible, adaptable and responsive to changing needs and circumstances.
Independent Living
It is time for an updated housing strategy for people with disabilities. There is a lack of support to live independently, a lack of accessible housing and the need to accelerate the pace of decongregation.
Did you know?
There is an overwhelming majority of people who believe the state should fully provide the adequate services and supports needed for people with Down syndrome when it comes to community/independent living (90%). Source: DSI-commissioned Empathy Survey (2021)
There has been a complete failure by the State to plan strategically and systematically for the future care and changing care needs of people with disabilities as they age. Despite the statistical evidence that people with intellectual disabilities now live longer and that the type of services and supports needed change across the life span, this is not reflected in service planning and funding.
Residential placements are only available in emergency situations and often the only choice is a nursing home, regardless of the age of the adult. Properly resourced community and home-based supports would greatly reduce the need for residential placements and prevent many situations reaching crisis point where residential services are needed. Managed planned transitions have much better outcomes for people with Down syndrome than transitions that occur in crisis and emergency situations. Moreover, it would enable families to plan for future care needs.
