Aug 21, 2023, Irish Examiner: Mother of son with autism fears what will happen when she dies https://www.irishexaminer.com/news/arid-41208766.html
A mother of a man with autism says she is grateful every morning she wakes up because her son is terrified of who will look after him when she dies.
Dublin woman Angelina Moore says that she cannot get a residential place for her 30-year-old son Edward, even on a part-time basis, and they both fear for his future when she dies.
She was speaking as new figures seen by the Irish Examiner show that the number of people waiting to enter adult residential care has risen sharply over the last four years, with 1,296 people with disabilities on a waiting list.
This is a 67% increase compared to 2019, when 776 adults were waiting to access residential care.
Ms Moore says her son had access to eight weekends of respite per year but this has now been cut to just two weekends. Respite as a pathway into residential care which would provide independence for Edward is something she and her son want, according to Ms Moore, to help him prepare for when she is no longer able to care for him…..
Ms Moore says parents in their 80s and 90s are providing care to their adult children because they cannot access residential care.
David Girvan is currently on the board of Family Carers Ireland and on the disability consulting committee for Dun Laoghaire/Rathdown county council. His 26-year-old Jessie has Cri-du-Chat syndrome, leaving her non-verbal and non-mobile. Her parents are worried about her future when they are no longer able to care for her.
Mr Girvan says: “There needs to be an agreement between all parents in our position and the State where there is an agreed tentative timeframe when our children should be moving into residential care.”
“The concept of burnout is very very real, especially when there is no light at the end of the tunnel, especially when you are fighting, begging and getting nowhere,” Mr Girvan said.
The figures seen by the Irish Examiner were provided to Sinn Féin’s health spokesperson David Cullinane from the HSE. They also show that the number of people awaiting personal assistance and home care has more than doubled from 1,117 in 2019 to 2,492 in mid-2023.
In a letter to Mr Cullinane, the HSE’s Head of Operations for Disability Services Bernard O’Regan said that the demand for full-time residential placements was “extremely high”, adding that the funding required to address this was not available.
“With regard to Residential places, the demand for full-time residential placements within designated centres is extremely high and is reflective of the absence of multi-year development funding that has not been in place since 2007/2008,” Mr O’Regan said.
Mr O’Regan cites the Department of Health’s disability capacity review, which was published in 2021 and says that a minimum of 1,900 additional residential places are required.
However, to get back to capacity seen at the beginning of the 2008 financial crash, an additional 3,900 residential places are needed.
“The number of adults waiting for resident placements, personal assistant hours, home support and Day Respite services have increased dramatically over the last 5 years,” Mr Cullinane said….
A spokeswoman for the HSE said residential services make up the largest part of the specialist community-based disability services funding currently disbursed by the HSE.
She said that as of June 2023, “the HSE is funding a total of 8,314 existing residential placement delivered predominately by section 38 and section 39 organisations funded under the Health Act 2004.”
She continued: “The HSE National Service Plan 2023 provides for the support of additional residential placements across a range of service need including 43 new placements, 23 residential packages for young people aging out of TUSLA placements, 18 delayed transfers of care, additional transitions of young people under 65 inappropriately placed in nursing homes and further moves from congregated settings.”
A Disability Action Plan for 2024 to 2026 will be published early in the autumn, she said.