They are raising their daughter's four children, all who bear the psychological scars of domestic violence, and two who are intellectually disabled.

It was the first time in several years that the couple had 24 hours for themselves, to laugh, talk, and enjoy their time together, away from the demands of domestic home life.

For grandparents like Phil and Sally, there is no government-funded respite care.

This is despite a recommendation in the 2014 Grandparents who have primary responsibility for their grandchildren Senate report, calling on state governments to offer such services.

"You sign up to care for them for 18 to 21 years, and you know it is a 24 hour, seven days a week job with no break, but it would be really good if we could get a break," Sally said.

"All I'm asking is for respite support so we can keep going... it would be wonderful to get that time away, just to recharge the batteries. It would be like winning the lotto."

Foster carers and formal kinship carers are able to get respite care funded by the state government.

Phil and Sally, who adopted three of the children in their care under the state's Children, Young Persons and their Families Act 1997, unknowingly gave up this opportunity.

Sally said when they agreed to "adopt", the state govenrment's Child Safety Services (CSS) did not explain that it was not like a regular adoption, nor advise that they would give up range of supports to assist the children and their carers, including respite.

This left them raising children with high needs, with a lack of familial or other supportive back-ups.

The couple have not been on a holiday for almost a decade and are unable to afford it anyway, and casual babysitters for four traumatised kids is not an option.

Sally said she was even refused government help after she had knee and hip replacement surgery and was incapable of attending to the four childrens' needs.

Phil was forced to take time off work.

"The department (CSS) said I should get relatives to help out with the children after I came home from hospital. To say something like that? It is like rubbing salt in the wounds," Sally said.

"If relatives were available we wouldn't be raising them. It showed how little they understood what the circumstances are like, and showed how little they cared."

She said a respite home-service or even a camp retreat for the children would provide relief.

"What would really help our family is for someone to come to our home and care for the children, so they are still in their safe place, and we would know that they feel comfortable."

Another suggestion was for a specially organised camp for grandchildren living with grandparents, which could give grandparents a break but also allow kids to see they are not the only ones with parents unable to care for them.

Phil and Sally have dedicated their lives to their grandchildren.

The couple were both adopted themselves and know how important a stable and loving home-life is to a child.

They have given up hope of a decent retirement.

They have poured thousands of dollars and unquantifiable amounts of energy into legal fights to ensure the youngest child, who was dumped from the department's books, remains safe in their care.

They live in debt.

These stresses are compounded by worry for their daughter, who has physical and psychological needs.

"Can you imagine how much these kids would cost the government if they were in foster care? How much it would cost the community?

"We are doing the best we can and we use everything that we have for these kids, yet the great job we do goes unrecognised."

Sally said CSS relies on the goodwill of families to cut costs. "They know that if you are a decent human being then you are going to always put the children first and that is how they get away with it," she said.

"We came through the family court system and we fought to keep the youngest safe, but we walk away jaded. I no longer believe that the government fights for the children."

Despite the hardships, Sally said their negative experiences of the out of home care system has only made them stronger.

"We try to become more resilient because you can't count on anything and you have to keep going. These little people can't look after themselves, they need us."

*Names changed

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