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Equal rights for parent carers

Carers UK has campaigned for parent carers to be included in major changes to legislation giving carers new rights.

With legislation to strengthen the rights of adult carers caring for other adults and legislation to enhance the rights of young carers in Parliament, Carers UK has urged the Government to seize this unique opportunity to improve the rights of parent carers too.

Government has now agreed to bring forward a change to the law which will mean:

  • Parent carers should now be automatically offered an assessment rather than having to request one and there is no longer a requirement that a parent carer be providing ‘regular and substantial’ care in order to receive an assessment
  • Clear recognition in law that parent carer assessments and services must have the promotion of their well-being at the heart of what they do
  • Consolidation of legislation on parent carers from three different Acts making the law much clearer for parents and for practitioners to understand and use

Phil and MissyPhil and Missy's story

Phil and Missy from Leicestershire are among the parents carers who fought for equal rights. Their 8-year-daughter, Andie, has Rett Syndrome resulting in multiple physical and learning disabilities. The couple also have a son, Elliot, who is 7.

Here they tell the story of their most recent and shocking battle for support and recognition for their caring responsibilities. Their experiences show how important it is that the rights of parent carers are clearly set out in the law.

Do you have a disabled child? Do you think of yourself as an unpaid carer? Think again. Let me tell you a story that should show you how gaps in our legal rights leave us vulnerable.

I am Phil, a working father of Andie, my daughter who is profoundly disabled. She needs one to one care at all times, and two to one for all activities involving hoisting and handling. My wife Missy is the primary stay-at-home carer since she lost her job as a specialist nurse due to the caring responsibilities. It is heavy end caring, we have no family who can help and friends are pretty scarce these days.

At the start of the last school summer holiday, Missy was hospitalised with a ruptured appendix. She needed two lifesaving operations and at one point we thought she would die. She was in hospital for three weeks and needed four months recuperation.

I notified our social services emergency team that I would need more care support. They agreed, but in the first two weeks I received none. Care provision locally is now subcontracted to eight different care agencies. I was told I could have a cash payment from the council to buy-in care myself. Unfortunately Andie has epilepsy and the drugs she is prescribed mean she cannot be left alone with a care worker, as social funds cannot be used to provide healthcare like administering medicines. So this wasn’t an option.

'I was concerned I might lose my job'

I was desperate – I needed to be with my seriously ill wife but was having to meet Andie's constant care needs. I was also looking after our young son and running all the domestic chores – shopping, cooking, washing etc (don’t underestimate this!). I asked if the authority could accommodate my daughter temporarily, but was told ‘this would not be considered’. I had taken time off work, and my employer was understandably asking when I would be back. I could give no answer. I was very concerned I might lose my job. The response from the council was ‘approach your employer for flexible working’ and then ‘your work arrangements are of no concern of ours’.

Instead of the promised 170 hours plus of additional care support, I received less than 20 hours. I was refused support at weekends because ‘I was there’. To add insult to injury, they withdrew six hours per week of respite care because my wife didn’t need it as she was in hospital – I would ‘be expected to muck in’, should be ‘too busy to be going out’ and was told that it was ‘for both carers, not for the father alone’. This continued for nearly five months, during which time I had no break from caring, and ended up with less support than before my wife was hospitalised.

'I was on the go for 18 hours a day'

When Missy came out of hospital, my care doubled – she was bedridden. I was on the go for 18 hours a day. All in all I was absent from work for seven weeks. I lost a stone in weight, and was utterly exhausted. I asked repeatedly for a reassessment of our care package but was ignored. I asked for a Carer’s Assessment but was told ‘it was not the way to go’. My GP was so concerned he contacted our social worker. He was told ‘we are already doing more than we should. To do any more would deprive other families’. I remain on medication to this day.

'Parental responsiblity' – children's services get out of jail free card?

So you see, children’s services have a get out of jail free card. It’s called ‘parental responsibility’. They use it and abuse it in a way adult services cannot. A carer of an adult has no legal duty to care. A parent carer has a legal duty and this can be imposed. I was dragged from my workplace for seven weeks and left to care without a break for five months. There was no regard for my health or my employment. I never thought it possible anyone would criticise me for working, but the local authority did, and acted in a way to prevent me from returning to work. If I were to lose my job, it would put me onto benefits and our adapted home at risk. This cannot be in the interests of the cared for person.

Missy and I have been refused Carer’s Assessments and an emergency plan. Carers under adult services have an emergency plan and a Carer’s Card scheme where they can phone an emergency number and someone will be dispatched to the cared for person. You might ask why adult and children’s services treat carers so differently. Responses from management from our Children’s Disability Team have included:

  • ‘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’. Did you ‘choose’ to have a disabled child?
  • Regarding the emergency carer card scheme: ‘this is an adult social care scheme… the scheme is for when there is no one, not when there is someone but they want to go to work.’

Creating an emergency plan involves time but no cost, and it improves outcomes. When we raised the issue with the lead councillor for children’s services, his response was: “Guidance is not law… the County Council has to identify £110 million worth of savings and until we have the budget, any non-statutory aspect of Children and Family services is on hold”. So, if the law does not require them to do something, they will not be doing it.

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.

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