I'm a modern day slave, carer tells MPs

Struggling to combine work and care

When Preethi's daughter was born with cerebral palsy she was determined to give her as normal a life as possible, and continued working as a media resources officer in a London school.  She told MPs how she faced "a punishing care responsibility - I mean 80-100 hours of intensive skilled support - that often meant nights turned into days without sleep" Preethi was forced to work part time, and then go self employed to make ends meet. 

Housing and education crisis

Things got even more difficult when her daughter required support to be carried up the stairs to the flat, but because she was a homeowner she didn't qualify for any local authority housing.  The pressure mounted when her daughter was refused by the 30 mainstream schools in the borough, despite an educational tribunal ruling in her favour. It took a sit in by disabled people and supporters before a local school would back down. 

"I had the housing crisis on one side and the education crisis on the other. It was like being in the middle of two tidal waves wondering when we would go under."

Left in poverty

She was left in real financial hardship. "I had to give up my job.  The years of providing care and later, paying for home education, with only a small assistance from the Independent Living Fund, had depleted my assets. I lost my home.  I had tried to rent but could not afford this too. I became homeless and it was only then that I qualified for authority housing."

"My benefits and my daughter’s benefits are just keeping us out of poverty, but we are trapped in a poverty of opportunity."

Although she received housing support and direct payments, it has been one battle after another to get her daughter the education and care she needs. Zarah cannot go to a college because she is caught in a bureaucratic system which is denying any responsibility for her.  Preethi' left MPs in no doubt how caring devastated her own life.

She told them, "What chance is there for me to work when we’re so crushed by the system that talks about improving the life chances of disabled people?  I am a modern day slave. As I get older and physically weaker, the demands on me only get greater."

5 Point plan for carers

She put her 5-point plan for change to politicians:

1. Carers' income: Carers should be able to earn more a week - say £80 without it affecting our benefits and we should be able to declare earnings on an annual basis, averaged out over the year.

2. Carers & employment: We need government employment schemes to connect to social services so that parent carers can be released for work and underlying causes can be addressed.

3. Opportunities for carers and disabled people.  We need more robust implementation of legislation so that disabled young people are not left without opportunities to attend school or college which then has a knock-on effect on their carers.

4. Flexibility of direct payments: When parent carers like myself are contributing heavily to a care package and also stepping in whenever Care Assistants need training, are off ill or do not arrive, we should be allowed to use this direct payment money for associated costs of caring - like gym membership and mobile phone rentals It should not be clawed back as it is now.

5. Pensions: When my daughter is 21,  I would like to be able to draw an early pension, having put in so many years of unpaid work as a parent carer,. Nothing will bring back the sizeable income I’ve lost as a carer but at least this will release the stranglehold on our situation.