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Disabled shouldn't mean disenfranchised

February 20, 2007 7:46 AM
By Anna Bawden in http://education.guardian.co.uk/egweekly/story/0,,2016447,00.html

One woman's battles on behalf of her daughter expose how badly state services let families down

Zahrah Manuel, 19, was born with severe cerebral palsy. As very little help was available to parents of disabled children in the late 1980s, her mother, Preethi, had to give up her job as a teacher because her daughter required round-the-clock care. Even working just two days a week was too much.

Preethi Manuel lost not only her job, but all financial independence. She had to sell her flat and use the proceeds to pay for care assistants and to educate Zahrah at home. "I lost all my savings, any chance of a full-time job and the ability to be a home-owner again," she says. "Because support didn't kick in in the early days, we have lost an awful lot. We lead a hand-to-mouth existence."

Zahrah got into her local primary school at the age of seven only after 25 people staged a sit-in at the education authority's offices in Camden, north London. "I did visit special schools, but they were so bleak; I didn't want that for Zahrah," says Manuel.

And the battle started again in secondary school. This time, Manuel had to take her case to the high court to get her child into her chosen school in Barnet. "Although Zahrah was given a statement which named Whitefields as the one she should attend, the school sent her away on the first day because they could not cope," she says. "I was devastated."

Although services have generally improved, the legal wrangling looks set to continue. Zahrah is meant to be in college studying drama, fashion, communication and photography, but instead is at home because the College of North West London has not trained a second person to help her - she needs two people to lift her. Her mother hopes she won't have to go to court again, but she will if she has to.

According to the Disability Rights Commission (DRC), the Manuel family's story of financial hardship and difficulty accessing services is all too common. Despite a raft of legislation and policies since 1989, services for disabled children have not improved as much as had been hoped. One in three of all children living in poverty has a disabled parent; and disabled children suffer lower educational attainment and are twice as likely not to be in employment, education or training at the age of 16. Even if they do complete education up to the age of 19, 40% of disabled adults are unemployed, according to the DRC's The Disability Agenda report, published last week.

"Failure to invest in support for families is driving millions into poverty and will create new patterns of widening inequality and disadvantage that Britain can ill-afford," says Sir Bert Massie, chairman of the DRC. The failure to invest in and reform key public sector services for disabled families, particularly social care, has left many without the assistance and support they need, he says.

The government has recognised this. According to a recent Treasury/Department for Education and Skills discussion paper, finding appropriate childcare, getting the right equipment, and access to speech and language therapy and short breaks is difficult for some disabled families. In a memorial lecture today for Rachel Squire, the MP who died in January after a long battle with cancer, Ed Balls, the economic secretary, will say: "Much more needs to be done to improve the life chances and services disabled children receive ... There must be more of a focus on early support and interventions, and better integration and cooperation between services."

But for disability charities, more needs to be done. "There is no statutory obligation to provide communication aids to disabled children, even though communication is central to any child's personal development and basic life chances," says Sharon Collins, executive director of operational services at Scope. "This sort of provision should be mandatory."

Scope wants to see the government provide better emotional and practical guidance to families, as well as more services for disabled children. "This means cutting back on the multiple form-filling that currently goes on and providing local authorities with the resources to really meet the needs of these families," says Collins.

Preethi Manuel would just like government policy to prevent other families suffering what she and Zahrah went through. And, of course, to ensure that her daughter can complete her education without having to go to court.