Will Budget 27 help adult children with intellectual disabilities?
Summary
Enda O’Brien from the Kerry Before We Die group discusses the inadequacy of new disability residential funding, noting that only 100 of the announced 212 placements are for planned care. He shares his daily struggles caring for his 32-year-old son, Hugh, who has Down syndrome, and explains the terrifying prospect of Hugh being placed in distant, unfamiliar facilities after their passing. O’Brien highlights the legal contradiction where parents must fund their adult children’s care indefinitely while losing decision-making power under the Assisted Decision-Making Capacity Act.
Topics discussed
Budget 2027 announcement for disability services
Introduction of Enda O'Brien and the Before We Die campaign
Critique of the 212 new residential placements figure
The policy of waiting for a crisis to provide care
What happens when the last parent dies
The process of national tendering for care
Risks of relocation and behavioral issues
Parents hoping their child dies before them
Hugh's age and cognitive abilities
Daily morning routine and the importance of structure
Day service logistics and 'tag parenting'
The lifelong commitment of constant supervision
Consequences of inadequate supervision
Managing food access with a locked fridge
Media coverage and family photos
Financial resources and home modifications
National statistics on elderly carers
Enda and Jill's ages and health timeline
Calculating the wait time for new beds
Regional allocation of placements by population
Specific statistics for County Kerry
Legal responsibility for board and lodgings
Guardianship limits for disabled adults
Obligation to care indefinitely after age 18
Loss of decision-making power under new law
Closing remarks and legal challenges
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