Yes, it was an evil act and she deserved to be punished. So why do I feel so sorry for the mother who drowned little Naomi? - 24 September 2008

The noise could be heard from the other end of the supermarket car park, a bellowing that was desperate in its intensity.

 

On going over to investigate, I found a distraught father, shopping list in hand, trying to persuade his severely disabled son to get out of the car.

 

The noise that I had heard was clearly his son's way of saying no. I offered to sit in the car with the boy while his father did his shopping.

 

He was pathetically grateful. His son seemed to have severe cerebral palsy and autism, and the father told me that he and his wife had had no help with looking after him.

 

Despite numerous visits to doctors and specialists, there had not been an official diagnosis of his son's condition - and they were both utterly exhausted, because the boy required 24-hour care.

 

The 25 minutes that I spent in that car left me feeling frazzled and drained.

The boy was inevitably perplexed by my presence, and continued to make an alarming noise.

 

As I drove home afterwards, I tried to imagine what it must be like to look after a severely disabled child without any support, or respite.

 

I was thinking about this again yesterday, when I read that Joanne Hill, a mother from North Wales, had been jailed for life after drowning her four-year-old daughter Naomi in the bath.

 

Naomi had mild cerebral palsy. Her mother, who had a history of alcohol abuse and depression, was 'ashamed' of the little girl's condition.

 

She found it impossible to accept the fact of her daughter's disability.

 

It was an unquestionably an evil act and she deserved to be punished - but I cannot help feeling sympathy for her.

 

The truth is that, in the past few years there have been several instances of parents murdering their disabled children - and, in some instances, then killing themselves.

 

There was the case in Leicestershire of Fiona Pilkington, 38, who murdered her daughter 18-year-old Francesca Hardwick, and then killed herself by setting fire to their car.

 

Naomi Hill had cerebral palsy.

 

A gang of children had launched a campaign of terror against Francesca, who was mentally handicapped, and her mother was no longer able to cope. Who could not help feeling desperately sorry for 67-year-old Wendolyn Markcrow, from Buckinghamshire, a doting mother who had looked after her disabled son for all of his 36 years until she could take no more. 

 

She suddenly snapped one night, gave Patrick 14 tranquillisers and suffocated him with a plastic bag.

 

There are many more such cases, and what they show us is that we, as a society, are shamefully letting down these children and their families.

 

Despite endless politically correct platitudes, there is still a veil of shame - and even hostility - that lurks over disability. And this is true both on a personal and governmental level.

 

The old prejudices - often admittedly fuelled by a lack of understanding and fear about how to cope with disabled people - still run deep.

 

I see this at first hand in the day-to-day dealings I have with the world over my own disabled daughter, who is 13 and has Down's syndrome.

 

It can go like this. 'You want your daughter to have singing lessons? In my experience, children who have Down's syndrome are unable to sing in tune.'

I explain that Domenica enjoys singing, that it is good for her self-confidence, her articulation and her posture.

 

'Well, I think that half an hour will be too long a lesson - shall we say 15 minutes?'

 

I look back through some old school reports: 'Domenica's behaviour can embarrass the other children' or 'Domenica is a burden on the other children'.

But this wasn't actually the case.

 

Nearer the truth would be that certain teachers felt that that Domenica was a burden on them - I have never, ever heard any child complain about Domenica.

Children who encounter my daughter are initially circumspect about her, then they make an honest assessment which invariably leads to their acceptance of her.

 

Children such as Domenica bring something to a school that is not on the curriculum, but is nonetheless an important lesson: that each child, each life, is important, no matter how different it may at first appear.

 

Naomi's father Simon Hill described her as a 'cheeky, chatterbox' daughter who was his 'best friend'.

 

You might think, with the plethora of government 'initiatives' to help them, that disabled children have never had it so good.

 

The initiatives include: Every Child Matters; Childhealth Strategy; Aiming High for Disabled Children and Better Care, Better Lives.

 

But each of them is mired in its own cumbersome bureaucracy.

 

I know of instances where parents of disabled children have appealed for help from local authorities, and have had to wait a year or more for an answer - never mind action.

 

Almost everyone seems to be involved in administering and regulating the services rather than actually providing for the disabled and their families.

Let us look at one of the more recent initiatives, Aiming High for Disabled Children.

 

Its aims include, in the jargon of government-speak: access and empowerment for disabled children and families; responsive services and timely support; and improved service quality and capacity.

 

Pilot schemes under this initiative have been launched with 20 local authorities.

And yet Kevin Williams, chief executive of the KIDS charity which helped me when Domenica was born, told me he does not know of a single disabled child who has received help from any of them - even though funding has supposedly been available since April.

 

The NHS was supposed to put £280 million into Aiming High for Disabled children, but so far the money seems to be 'lost' in the Primary Care Trust (PCT) budget.

 

Too many Government ministers (with the notable exception of Ivan Lewis, the Care Minister) make the mistake of thinking that once the announcement is made, the reality is in place.

 

They have achieved their 'headlines' and can move on to the next big launch. But rhetoric and headlines do not save lives.

 

Parents find it increasingly difficult to navigate their way around the various services available to them.

 

They are constantly referred from department to department, and yet no one is prepared to take ultimate responsibility.

 

Many parents, particularly those with children who need 24-hour care, just give up. And when they give up, they fall below the radar altogether.

 

These are the parents who become ill trying to cope. These are the ones who get forgotten about, who struggle on and on and on, with no respite of any kind.

This is the system that can lead to tragic suicides and even murders.

 

Meanwhile, more and more day respite care centres are being closed, and the local authorities spend their days trying to hit ludicrous 'targets' at the expense of the most vulnerable people in our society.

 

Community nursing services are being cut all over the country, and yet there are more and more children living at home with complex care needs. East Anglia has no community nursing service at all.

 

So who is looking after those disabled children who need care, those families who need help?

 

Rafts of laws exist to protect disabled children, but in practice that means nothing at all.

 

A recent Mencap report, entitled Death By Indifference, showed that six disabled young adults and children died last year as a direct result of NHS negligence.

Many believe this is just the tip of the iceberg.

 

Just what sort of society have we become if we demand legislation on how to care for the most vulnerable in our communities - only to ignore the legislation when it is in place?

 

Joanne Hill did a wicked thing in murdering her daughter, but I just wonder what support she had.

 

From the moment of diagnosis, when Naomi was two-and-a-half, she should have had support not only for the child, but also to help her in coming to terms with her daughter's disability.

 

Joanne Hill is clearly a troubled individual. Who was there to give her the help that she so obviously needed?

 

When I read about Joanne Hill's case, I thought of the courage the father I had met in the car park needed to live his life.

 

I saw again how much love he had for his son, and I prayed that he and his wife would one day find the help that has been lacking.

 

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