New care laws which ignore the rights of parents with seriously ill or disabled children must be revised, Carers UK says. The Government has an unprecedented opportunity to redress this, but time is running out.

As debate on the Children and Families Bill reaches its final stages, Carers UK is calling on the Government to include parents caring for disabled or seriously ill children and ensure they have the important new rights already included in the Care Bill for those caring for adults and older people. At the same time, piecemeal rights that parent carers have could be streamlined and consolidated making the law easier to understand and implement.

Emily Holzhausen, Director of Policy at Carers UK said: “Sick and disabled children are amongst the most vulnerable in our society but too often their parents caring for them are ignored and refused support. Parents of disabled children have different needs from other parents but struggle to have these recognised. These parents see a huge impact on their mental and physical health, their relationships, ability to work and their financial security.

As the Government strengthens the rights of other carers in the Care Bill and Children and Families Bill, they must also improve the recognition in law of parent carers so that they can access support. If Government were to redress this by consolidating rights, and placing a new emphasis on improving parent’s well-being it would send a strong important message to parents of disabled children that they matter, too. Most importantly we believe that supporting parents’ well-being would help the whole family, including the disabled child.”

Research carried out by the charity shows that whilst a third (32%) of all full-time carers go without any practical support this rises to almost half (47%) of carers caring full-time for disabled children under 18. [1] Failure to include parents of disabled children in stronger rights for other carers would be a huge backward step meaning support for parent carers will fall further behind.

The Government’s Care Bill will enhance the rights of adult carers caring for disabled adults and older people. The Children and Families Bill will also strengthen rights of young carers. But without action ‘parent carers’ will be the only group of carers with inferior rights – despite strong evidence that parents of disabled children get less support than carers of older parents or disabled adults. Worse still, the few rights that parents currently have will be left in “rump legislation”, which is currently poorly understood and implemented.

Both the Law Commission and the Joint Committee on Human Rights have recommended that parent carers are given the equivalent rights to assessment as other carers. There is an opportunity to consolidate the law, give parent carers the same rights to assessment and address the well-being of parents of disabled children.

An important set of amendments to the Children and Families Bill is to be debated in the House of Lords late on Tuesday night or on Wednesday, tabled by Baroness Pitkeathley which would give parent carers similar rights to other carers.

Phil and Missy from Leicestershire are among parents fighting for rights and recently wrote a blog for Carers UK about their experiences. Their 8-year-daughter, Andi, has Rett Syndrome resulting in multiple physical and learning disabilities. They have faced a struggle for support and recognition through their daughter’s short life – a struggle which reached recently reached crisis point when Missy was critically ill and the family were denied additional care support for their daughter.

Phil Luntley, who juggles full-time work alongside caring said: “We were told parents are not considered unpaid carers, they choose to have children, to support and provide for them, they have ‘parental responsibility’, with all the legal duties attached to that position’. Do you ‘choose’ to have a disabled child?

Parent carers need equal status in law to carers of adults and to sibling carers. To make a distinction is to discriminate, which places parent carers at a massive disadvantage. Fighting for our rights is exhausting, if you can even find the time but I really think parent carers are going to suffer in the future unless we are protected in law.”

More information about Carers UK’s Equal Rights for Parent Carers »

[1] From a Carers UK survey of over 3,500 carers including 518 full-time parent carers of disabled children.