Moving accounts of parents fears for additional children at Navan meeting

Heart-breaking stories of the fears and concerns of carers and parents of children with additional needs, were aired at a meeting in Navan last nIght (Wednesday).

Several of the 60 or so carers who attended the meeting in the Ardboyne Hotel, organised by Deputy Gillian Toole, broke down in tears as they outlined their worries.

"It is so lonely to to go to bed at night and your last though is being terrified of what is going to happen to these people I love so much, when I die," one mother of two autistic daughters told the meeting.

Fears for the future care of children with special needs, difficulties accessing housing, jobs, and education were among the issues raised.

One young woman who had been caring for her brother since she 19, told of her fears as her brother faces homelessness in the coming weeks.

The meeting was hosted by Deputy Gillian Toole so that parents and carers could discuss future planning, support and community resources.

"This information will be then relayed to the Joint Oireachtas Committee on Disabilities. We will be there to listen, take on board your needs and ensure that they are communicated through to the relevant people/departments," said Deputy Toole, a member of the Oireachtas Committee.

She said she wanted to hear about concerns re transitioning from secondary school to day services, home supports, personal assistants housing, including supportive housing.

Gemma Ryan, of Meath County Council's Community Preparedness Alliance encouraged people to sign up to the database held by Meath County Council on people who would need additional help in the case of an Adverse Event such as a red weather warning or any event that poses a direct threat to the safety, health, or welfare of older and vulnerable people. Examples could include localised flooding or response to an emergency as defined by the major emergency plan.

One mother told the meeting that when her son turns 18, it is likely he would be deemed to not have 'capacity' to look after himself. She will have to go to the courts in order to continue caring for him.

"This will cost thousands that could be going to James for other things. I also worry about what will happen to him and when his Dad and I are gone."

One father outlined how his son had been on the waiting list for housing for ten years and advised those present to always return the form that is sent out by the council each year to those on the list.

The meeting heard that the HSE now seems to expect siblings to care for their disabled brothers or sisters.

One woman who is current trying to secure accommodation for their brother said she and her sister had been caring for him for 20 years.

Another mother said she knows that her son will always be her daughter's greatest advocate but he should not have be his sister's carer when his mother dies. She wants him to be able to live his own life.

The meeting also heard how children of local authority tenants could also lose their homes when their parents die.

Employment opportunities for young people were also a concern. One parent told the meting their son was attending the National Learning Network, but when he finishes it will be very difficult to get him somewhere to work. "My fear is that he will end up at home scrolling on his phone."

Following the meeting, parents and carers had the opportunity to discuss their family's situation with Deputy Toole and her team on a one to one basis.

Read more in Tuesday's paper.