Your letters - February 2011

Who’s fighting the benefits scrap?

I’m very, very worried about all I’m hearing about the Government’s plans to scrap all our benefits and amalgamate them into one.

I have severe epilepsy and have been unable to work since I started having three or more tonic-clonic seizures a week. I’m starting to get very depressed as I’m pretty sure my family would collapse under the financial burden of carrying me.

My wife is already working all the hours she can, to try to pay the mortgage and our bills, and feed the kids.

Amalgamation will finish us, I’m sure. Is anyone doing anything? Is anyone fighting? What is happening? Can I do anything?
Martin Thorn, by email

Accessible transport has ‘come a long way’: let’s not lose it

I’m writing with reference to the letter from Will Bee (Disability Now, November 2010) about access to buses.

I must have missed the negative fallout from Emma Bowler’s article (“On the buses”, Disability Now, July 2010) but I, too, am worried that the campaigning and sheer hard work done by disabled people over the years could be jeopardized by a lack of perspective.

Will is right in saying that some disabled people still lack access to bus transportation in rural areas, but we have come a long, long way and we must not lose these gains.

I’m a wheelchair-user and my life was transformed when buses became accessible. I now use buses every day and I’m more confident in travelling on them than ever.

One reason why some disabled and older people don’t use buses is that they may never have been on one or, if a trauma has occurred, they may have lost their confidence.

We need people who are willing to support people in learning to get on and off buses. People who currently rely on local authority vehicles and ambulances could use public transport if they were helped to regain their confidence. This would open up their lives in many important ways and provide people with more options than just local day centre attendance or hospital visits.

Accessible public transport must be assured.
Ann Macfarlane, Surbiton, Surrey

Why can’t local authorities recognise best options for autism?

My journey began in April 1994 when my beautiful baby boy Steven was born, while I was living in Dubai.

Autism wasn’t a concern of mine when he was born, but its diagnosis two-and-a-half years later brought my life to a stop.

At the time, there weren’t many schools in Dubai that were prepared to take an autistic child, and information and support on the subject was negligible.

Instead, I taught him at home until he was six years old. During that time I worked hard to understand what goes on in his brain.

Seeing the amount of progress he was making in Dubai, I convinced myself that my son would make even greater strides if I were to return home to the UK, where facilities are better.

I returned to the UK in July 2000, and accepted a place for Steven in an autistic school run by the local education authority (LEA).

Within no time I saw that Steven’s needs were being ignored and that he was regressing in every skill that I had previously taught him. This was difficult for me, because the school and the education authority ignored my reactions to what I saw.

After a year, I withdrew him from school and started teaching him at home again, hiring and training psychology students to work with him. During this time he again made progress in leaps and bounds, which told me that this was the type of support he needed.

At this point I took the education authority to tribunal, in an attempt to get funding for Steven to be taught at home. Although home teaching was my preferred choice, I knew that the LEA could have argued against it, as I didn’t have space and had a toddler to care for as well, so I offered the LEA two choices: one was to fund a home programme and the other was to fund an autistic school of my choice.

After causing me more stress, the LEA eventually opted to fund an ABA school (Applied Behaviour Analysis is a method of teaching used for autistic children) where again Steven made no progress.

When Steven reached secondary school age, the LEA suggested another autistic school. By this time I didn’t have a lot of choice and agreed to the school it proposed.

I was also suffering health issues at the time and decided I couldn’t keep battling to teach Steven at home while also dealing with other demands. Not until he became 16, after I’d moved to a larger home with more space, was I able to teach him myself again.

These experiences prompted me to write a book, called No Matter What, in an effort to help myself cope and make others aware of the challenges of autism.

The core of the story is that the LEA wasted resources keeping my son in what I felt were more like childminding services than educational institutions. Funds could have been used more efficiently if Steven’s needs had been properly evaluated.

Now, after all these years, I see that the LEA didn’t only waste its resources but wasted eight years of Steven’s life and left me to pick up the pieces.

Because  of the LEA’s behaviour, I had to start re-teaching my son when he got to the age of 16, when the challenges were far greater than they would haven been if they had been addressed properly eight years earlier.

My experience has led me to become an advocate to support other families with autism, because I’ve learnt that my son’s case isn’t an individual one. There are thousands of examples of UK families being failed by the system.

Sandy Howarth, London