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 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 was just 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 Even 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 my son 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 haven't 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 with disabilities could also lose their homes when their parents die.

One woman explained she was a single mother with two autistic sons. She lives in a house leased from the council by a private company. "The lease if for 25 years, or until I die. Under this lease, when I die, they will lost their home. It is the only home they have ever known. My youngest goes to school in the community. We have family members nearby. I had hoped they could stay here."

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

One mother said there is a huge worry as a child approaches the age of 18. "Our is 18 and we want to know what is next . We don't want our child to just be given a place that is not suitable. It need to be the environment. We are worried that he will end up at home with us. What if he is offered a place that is unsuitable, do we refuse it?" she asked.

One father said they had looked after their child for over 40 years but never got carers allowance because of a means test. "People who get the carers allowance automatically get the Carers Support Grant. It seems to be the best kept secret ever. We only became entitled to it after we retired and we missed out on it for a year or two because we didn't know about. Every year I have people telling me they didn't know about it."

He also noted that facilities for young people with special needs were located in industrial estates, industrial units. "Their siblings when they reach 18 are moving on to top class academic and sorting facilities. That shows to me the importance placed on our special needs children. Facilities are not allowed to be set up in industrial units now, but because they are already there, they can stay there."

Eamon Bray of Down Syndrome Ireland said they had held a number of meetings around the country where parents expressed concern about how who would look after their adult children.

"We had people in their 80s crying because they couldn't get places for their adult children. They had been trying for 40 years or more to get services for their children and feel nobody seemed to be listening.

"The government is not doing enough. They don't seem to realise how serious it is. With medical advances, more and more people with disabilities are outliving their parents and even their siblings, so we need to be putting pressure on the politicians and the HSE to get the services. "

Mr Bray said the services that are there are choc a bloc. "The only hope of vetting a place in a residential setting is if somebody dies."

He also pointed out that not everyone would needs a residential setting. "There are people who could stay in their own home if they had necessary supports and parents are willing to leave their homes to their disabled children if the support is there for them to live there," he said.

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.