Carer's charter: Parents call for Stormont law change
Northern Ireland is the only part of the UK where the protection of carers is not enshrined in law.
Now, a group of parents who are aged over 60 and look after disabled children are calling on the assembly to change that.
Sherol Matthews, from Bangor, County Down, has been the main carer for her son William since he was knocked down by a car in 1990.
He was six years old. "Life just changed in a second," she said.
"It was a long haul after that. He was unconscious in hospital for nearly five months.
"It was traumatic. We didn't know if he was going to make it or not, but thankfully he did.
"It was difficult to register that we had actually lost the William that we had, but we had got a new one in his place with lots of different character qualities.
"But, we're so thankful that he's still with us - he's a different character than he was but there's still the rascal side to him and he has a great sense of humour."
What Sherol was not prepared for was the additional battle over the years with social services for help in caring for her son.
She said the most frustrating aspect was dealing with different people every time the family needed help and that, even after filling out multiple forms, there was no guarantee that help would be available.
"I think if they see you managing, then you're left to manage," she said.
"You have to go through such a ream of forms and, even then, it's often turned down.
"I'm not alone in this and it's awful always feeling that you have to beg and battle for each little thing."
The last five years have been especially hard with no respite, Sherol said.
"There was a place that I'd battled for years to get him into but because he was a wheelchair user, it wasn't readily available to him."
Finally, after telling her story at a conference two months ago, William was offered four days a month in a respite facility.
"He loves it, he's very happy there. And it means I can go to bed when I want and get up when I want on those four days.
"And I can even go out some night after tea time because I don't have to do the night-time routine."
Sherol's biggest concern is what will happen to William when she can no longer look after him.
He is getting bigger and heavier, and Sherol said she is struggling morning and evenings after the personal care she has carried out for over 25 years.
The charity Positive Futures has been helping Sherol, and many other families, put together a proposal for a Carer's Charter.
"The charter asks for things like the simplification of process, the simplification of paperwork" said Agnes Lunny, the charity's chief executive.
"We're asking for a single point of contact for families with health and social services and, above all, we're asking for joined-up government."
Sherol is hopeful that future carers will not face the battle she has faced.
"There have been many times when I've reached crisis point and I've had to walk away and go into a room and cry.
"But, we got over it.
"I never want to put him into care because William is very much a sociable person but he's happiest in his own surround so that's why I want his future care to be in his own home where he's happiest."