When a mother's love is not enough...

[Osem]

We've had a few debates about the problems of disability in these forums and the manner in which the state assesses and addresses the needs of the people/families involved.

Last night we came across a terribly moving BBC documentary which summed up the awful position so many people find themselves in when caring for disabled children. I recommend everyone finds the time to watch it.

http://www.bbc.co.uk/iplayer/episode...is_Not_Enough/

It illustrates just how tough, uncaring and inadequate the welfare 'system' can be for those in the most desparate need of help. On top of everything else she has to endure, the mother of a severely disabled child needing 24 hour care being required to measure the child's intake of food/dring and output of urine/faeces in order to secure a couple of extra nappies a day for example! The constant stuggle these loving parents face in 'fighting' a system which ought to be there to support them NOT add to their terrible burden.

It also sadly, highlights the impact of caring on other family members and the plight of those families still being targeted for abuse for no other reason than they include a disabled child and the apparent failure of the authorities to act quickly and decisively in tackling it.

Ironically on another channel at around the same time, a programme on cheats and swindlers highlighted the relative ease with which a businessman and his partner were cynically able to swindle all sorts of benefits (inlcuding Disability Living Allowance) to the tune of tens of thousands of pounds whilst living the high life. Their fraud which lasted several years was only uncovered by chance when a holiday photo of them on their yacht was posted on the internet and spotted.

http://news.bbc.co.uk/1/hi/wales/south_west/7905946.stm

I dare say the fact that these 'people' were living a life of luxury at the taxpayer's expense meant they had a great deal more energy and inclination to cheat the system as compared to those caring parents who barely have time to sleep let alone plan and execute complex frauds......

[Taf]

Father's love too...

My wife and I are parents to handicapped twins.

I have been on constant medication against panic attacks for years.

My wife is medicated for depression and has suffered serious heart problems they say are due to the constant stress.

Respite is not available here, so we just have to plod on day after day after day, often fighting beaurocracy in many forms that the state demands. Also fighting an education system that pretends to care but doesn't deliver at all.

Our only ally is their Paeds Consulant who has steered us towards medical and psychaitric help for the twins. Until budget constraints limit help once again.

Carers are people too.

[Osem]

Originally Posted by Taf

Father's love too...

My wife and I are parents to handicapped twins.

I have been on constant medication against panic attacks for years.

My wife is medicated for depression and has suffered serious heart problems they say are due to the constant stress.

Respite is not available here, so we just have to plod on day after day after day, often fighting beaurocracy in many forms that the state demands. Also fighting an education system that pretends to care but doesn't deliver at all.

Our only ally is their Paeds Consulant who has steered us towards medical and psychaitric help for the twins. Until budget constraints limit help once again.

Carers are people too.

Quite Taf

I was just thinking on my way back home earlier that the title of the programme once again 'overlooks' the role that many men play in bringing up handicapped children and the additional burden they face, especially when it comes to the care of older children. The reason for my reflection was that I'd just bumped into a father from our youngest's special school. His youngest is now 12, severely mentally disabled, autistic and doubly incontinent. His wife left them all many years ago and since that time this guy's been doing the caring all on his own. As I know from my own personal experience, he's not only had to battle the system like any other parent in his position, he's also had to endure the sort of institutionalised doubt and suspicion that pervades many aspects of the child welfare and health services, for no other reason that he's a father.

Having seen the programme last night and knowing what I do about the awful burden faced by so many parents of disabled children - many far worse afflicted than our youngest - I have every sympathy for your situation. I don't know if you've seen it yet but I imagine that, for you both, the programme will ring very true.

Let's all hope that a root and branches review of this aspect of government policy is undertaken sooner rather than later.