More "charity"? - Political Discussion - Shroomery Message Board

Home | Community | Message Board

You are not signed in.
New Account

Forum Index Search Posts Trusted Vendors Highlights Galleries FAQ User List Chat Store Random Growery

This site includes paid links. Please support our sponsors.

Welcome to the Shroomery Message Board! You are experiencing a small sample of what the site has to offer. Please or register to post messages and view our exclusive members-only content. You'll gain access to additional forums, file attachments, board customizations, encrypted private messages, and much more!

Shop:

All-In-One Bags That Don't Suck

Bulk Substrate

Golden Teacher Liquid Culture For Sale

Bulk Cannabis Seeds

Red Vein Kratom

Unfolding Nature: Being in the Implicate Order

Jump to first unread post

Pages: 1 | 2 | Next > [ show all ]

Xlea321
Stranger

Registered: 02/25/01
Posts: 9,134

More "charity"?

#3464104 - 12/08/04 10:59 AM (19 years, 4 months ago)

Replace social security with this shit? No thanks.

Gift horse with rotten teeth

It's no fun when you have to go cap in hand to charity for help, says Jane Muir, whose teenage son is severely disabled. You can often end up feeling patronised, humiliated and exploited. It's time, she argues, that charities recognise the error of their ways

Wednesday December 8, 2004

It's a funny experience watching BBC Children In Need with your own child in need; usually, I switch it off, as I would like to avoid my son growing up thinking of himself as being "needy". But it is not so funny trying to get hold of the money donated to Children In Need. In fact, I'd say that getting charities to hand over the cash is one of the most humiliating aspects of having a child with a severe disability, and I'd almost rather be sitting on a street corner cap in hand. You can see why some people believe that is where the word "handicap" originated.

These days, children who win compensation claims are often given in the region of ?2-3m, possibly more - this being the amount the courts deem necessary to fund the disabled child's needs for life. I am a single parent (many parents do not stay together after the birth of a severely disabled child) on benefits (parents often find it impossible to return to work due to care needs): the onus is on me, as on other families not liable for compensation, to find that ?2-3m myself, come what may.

The government funds a certain amount, but by no means all. The statutory bodies - NHS, social services and education - have no ethos to give the best, but only to give the absolutely necessary. Yet children with complex disabilities need more than merely the "necessary" to realise their potential. Who wants, for example, a heavy, awkward powerchair that is impossible to take anywhere or to clean, and that breaks down every few weeks?

A recent report by the Family Fund found that "families of severely disabled or seriously ill children are turning to debt to overcome the financial hurdles they face", and "are spending on average almost ?28 a week on loan repayments, while the national average is just over ?3 a week".

The sensible thing to do is to go to the charities that exist for that very purpose: to hand out funds to those deemed the most deserving. Which is where the difficulty lies. Do you have any idea what it's like asking charities over and over again for money for your own child? The experience can be very humiliating, and many parents, after one experience, will not apply again. They will forgo the family holiday or take out a loan instead.

Helen Cheney, a friend of mine who is the mother of a teenage girl with severe cerebral palsy, says: "We gritted our teeth and applied to a charity for a wheelchair ... They virtually accused us of stealing ... I wouldn't ask for anything again."

For every application you make - and so far I have had to make around 20 funding applications for equipment, therapy, care, etc, for my son, who is now 13 - you are expected to reiterate in detail the exact nature of the child's disability. This is painful when you are working so hard to see your child in a positive light and make much of the small things they can do. Even then, evidence has to be provided from GPs, physios, from school, from NHS departments - and just obtaining these can take endless phone calls, letters and nagging of busy departments that haven't really got the time. A charity once asked my GP to provide a letter stating that I was a suitable person to accompany my son on a funded holiday.

But worst of all is the means test. The fact that you've been means tested already just to be eligible for state benefits seems to count for nothing. You are required to list your expenditure per week in detail. How much do you spend on food? On clothing? On phone and TV? Household bills? Insurance? Do you have debts or savings? Do you live with anyone else, or do you have other children? Intrusive questions, to say the least. And when you already feel uncomfortable enough being on benefits, they don't do much for your self-esteem.

On reflection, the means test is not the worst. The worst is The Attitude. KC is head of a special school in the West Midlands, but I cannot give her name or tell you which school she works in. "I daren't speak out against the charities," she says. "I hate them, but if I was identified we'd risk losing the funding we get for the children. It's often guilt money from rich people or successful companies who expect recognition and gratitude - a special presentation ceremony, speeches, photoshoots, their name all over whatever they provide. If you protest, they might not offer again. It disgusts me, but we have no choice but to go along with it."

One of our local charities provided a custom-built orthotic walker my son needed to help prevent hip dislocation. It cost ?2,000 but was meant to last for 10 years or more, into adulthood. After two years, they decided not to follow up the ?500 annual adjustment and service fee any longer. They refused to give me a reason for this, and wouldn't speak to me on the phone or answer my letters on principle, as to do so would cost them money. Nor would they speak to our social worker. Their trustees were anonymous and it seemed we didn't exist, other than as an application form that had been binned. The secretary insinuated that I'd been very lucky getting it in the first place without expecting more. Shades of Oliver Twist.

More worrying still, when I rang round other charities to find funding, most said they couldn't fund a piece of equipment not provided by themselves. One big national charity said it would prefer to consider an application from us for a brand new walker -of the same type - which it would then fund for life.

So just whose ?2,000 was it willing to chuck into a skip? And who are these trustees of other people's legacies and gifts?

KC reckons they may overlap, with certain people turning up on many boards in one city. "They may be solicitors, bankers, accountants - business people with little real understanding of the needs of disabled kids," she suggests. "They 'manage' the money according to preset criteria. The process is institutionalised and impersonal, but it makes them feel good - and they get tax relief."

A charity in the home counties foists upon their local special school an annual outing to the nearby wildlife park. Most of the kids have been there so many times they aren't bothered about going again, or have grown out of it. The teacher always politely suggests that the outing could be changed, that they'd love to go down to one of the London museums instead, or perhaps to the theatre. But the charity won't hear of it: it's the wildlife park or nothing. And not only that, the children will be given hats to wear and balloons to hold with the charity's name and logo, and the local press will be invited along to take pictures to mark the generosity of local businesses who "care".

A few of the larger charities are waking up to the fact that prevailing attitudes are nothing less than Dickensian, and that families have a right to respect, privacy and sensitivity, just like anyone else.

The director of a very small local charity surprised me nine years ago when he turned up at my door bearing a large cardboard box with a computer for my son, then aged four. He set it up himself, provided maintenance and software, and has updated all the hardware at intervals without us even asking. He looks at Alistair's developing writing skills with interest and replaces the frequently broken joystick unquestioningly. No photos, no article in the local press, no presentation ceremony - just straightforward kindness and thoughtfulness.

If charities must be large, impersonal and based on application forms, or small and anonymous with no accountability, then what I and other parents like me would really like is feedback questionnaires such as any other company would issue, asking: "How did you find our service, and how can we improve?" I'd like the Charity Commission to issue guidelines on relations between charity and beneficiary. I'd like there to be a central database, or "passport", that confirms my son has cerebral palsy for life and that I'm not lying. I'd like my son to be called a client, or a customer, and to have representative service users included on the boards of trustees.

What a nice surprise it was to find that Ruth Owen, chief executive of the dynamic charity Whizz-Kidz, is a wheelchair user herself, and that many of the employees of the Family Fund and Contact a Family are themselves parents of disabled children and are constantly looking at ways of making their service more humane and accessible.

Maybe we need to jettison the very concept of charity for people with disabilities, or perhaps we could just start looking in that direction - because elsewhere, I find that I am looking the gift horse in the mouth and finding far too many rotten teeth.

http://society.guardian.co.uk/societyguardian/story/0,,1368214,00.html

--------------------
Don't worry, B. Caapi

Extras:

Similar Threads	Poster	Views	Replies	Last post
Charity calls for cannabis study	Tao	695	4	01/30/05 07:00 PM by blacksabbathrulz
Charity ( 1 2 3 all )	newuser1492	2,048	49	11/30/04 02:51 PM by FlameBait9000
Those Evil Corporations OR Charity without force won't work!	SoopaX	782	7	01/03/05 05:18 PM by newuser1492
How can 42 thousand children be killed legally?	Zahid	1,761	17	09/08/04 12:17 AM by Xlea321
Bush Sr.'s new charity	nugsarenice	707	4	06/12/02 12:25 PM by nugsarenice
New "Freedom" Initiative/Mandatory Mental Health Screening of American Children Passes	ekomstop	1,034	4	11/25/04 06:09 PM by Great_Satan
35 children killed by insurgents	downforpot	633	1	09/30/04 05:29 PM by Divided_Sky
Palestinian textbooks brainwash children to kill ( 1 2 3 all )	Ed1	5,734	44	11/10/04 08:40 PM by ricyjo