Mother's anguish as quango cogitates
Sarah Pendlebury is pretty good at smiling. But precisely what is going on behind her eyes is hard to fathom - a mystery locked behind a wall of disability that has rendered her unable to speak as she looks out at the world from her specially adapted wheelchair with almost no control over her limbs.
She is a student at Beaumont college, Lancashire, a residential centre run by Scope, the cerebral palsy charity, Her three years could soon be up at the college, but her education has been interrupted by medical complications, including operations to prevent her physical condition from deteriorating further, to enable her to support her own upper-body weight and to protect her internal organs.
The college is waiting to find out whether it will get special dispensation for the funding it needs to keep Sarah, 19, for another year.
By the end of that year, if it is granted, the staff hope to find a part of her body to use as a "switchpoint" - a finger, toe, anything that she can reliably use to press a button.
With specially adapted computer equipment, this could enable her to communicate without the help of specialist carers, even if the prospect of her being able to form entire sentences remains a distant . if not impossible, goal.
Her mother Margaret, from St Helens, Merseyside, said: "We have no idea what we will do if she doesn't get this extra year.
"We know her because she is our daughter, and we can understand what she wants. But she needs to be able to communicate with other people. Without the college, the situation will be hopeless. I lie awake at night worrying about what will happen if we don't get another year, and about when we will find out whether the funding is going to be available to her. It is ridiculous that we have had to fight so hard."
At present, she relies on using her eyes to "point" to symbols held up in front of her face, a time-consuming process by which she can communicate simple information such as a preference from a particular flavour of drink, a task that can take up to 15 minutes.
Already, Sarah's education at Beaumont has cost the college more than Pounds 100,000 a year, far more than what is available from the "funding matrix" which the Learning and Skills Council applies to students at specialist colleges. The most available under the matrix is less than pound;70,000 a year. Additional money is not guaranteed and is subject to special pleading on behalf of the most disabled students.
An intellectual, legalistic and semantic debate continues over the extent to which Beaumont's work should be classified as "care" or "education".
Care is the responsibility of the Department of Health or local authority social services departments, education is the remit of the LSC.
Meanwhile provision for people like Sarah continues to be funded by specialist colleges' capacity to live in debt, draw funds from elsewhere or rely on exceptional funding allowances.
Scope, which owns Beaumont, supports the college with cash and by providing administrative services such as human resources.
While Sarah's parents continue their battle for an extra year's cash, most of those who approach the college find that there are no places at all and are left to the mercy of providers closer to home which many initially ruled out as inadequate for their needs.