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InvisibleXlea321
Stranger
Registered: 02/26/01
Posts: 9,134
More "charity"?
    #3464104 - 12/08/04 12:59 PM (12 years, 3 days 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


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Invisiblesilversoul7
Chill the FuckOut!
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Registered: 10/10/02
Posts: 27,301
Loc: mndfreeze's puppet army
Re: More "charity"? [Re: Xlea321]
    #3464166 - 12/08/04 01:18 PM (12 years, 3 days ago)

Quote:

Alex123 said:
Replace social security with this shit? No thanks.



At least charity will not be bankrupt by the time these children grow up. I can't say the same for social security.


--------------------


"It is dangerous to be right when the government is wrong."--Voltaire


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Offlinephi1618
old hand

Registered: 02/14/04
Posts: 4,102
Last seen: 6 years, 6 months
Re: More "charity"? [Re: silversoul7]
    #3464284 - 12/08/04 01:42 PM (12 years, 3 days ago)

"as on other families not liable for compensation"

Is this a proper use of the word liable? Does the meaning differ between the US and UK?


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InvisibleVvellum
Stranger

Registered: 05/24/04
Posts: 10,920
Re: More "charity"? [Re: silversoul7]
    #3464458 - 12/08/04 02:22 PM (12 years, 3 days ago)

what charity?


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InvisibleSoopaX
Criminal DrugAnalyst

Registered: 11/13/04
Posts: 1,690
Re: More "charity"? [Re: Xlea321]
    #3464930 - 12/08/04 03:59 PM (12 years, 3 days ago)

So we need to force people to spend their money in a way that we see fit!


--------------------


Jackie Treehorn treats objects like women, man


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InvisibleXlea321
Stranger
Registered: 02/26/01
Posts: 9,134
Re: More "charity"? [Re: Vvellum]
    #3465071 - 12/08/04 04:27 PM (12 years, 3 days ago)

Quote:

what charity? 




Boom, there it is... :thumbup:


--------------------
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OfflineAsanteA
light your candle on my love
Male User Gallery

Registered: 02/06/02
Posts: 51,491
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Re: More "charity"? [Re: Xlea321]
    #3465434 - 12/08/04 05:37 PM (12 years, 3 days ago)

Quote:

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




that stood out for me.
Damn... :frown:


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Anonymous

Re: More "charity"? [Re: Xlea321]
    #3465462 - 12/08/04 05:43 PM (12 years, 3 days ago)

do you make charitable contributions?


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Invisiblesilversoul7
Chill the FuckOut!
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Registered: 10/10/02
Posts: 27,301
Loc: mndfreeze's puppet army
Re: More "charity"? [Re: Xlea321]
    #3465594 - 12/08/04 06:08 PM (12 years, 3 days ago)

I'm still trying to figure out logically what's wrong with this. Sounds like there may be some bureaucracy to go through in some cases, but you're kidding yourself if you think there's no bureaucracy in government programs. Other than that, it seems to be a bunch of people whose feelings were hurt. I'm sorry, but a humiliating experience is no reason to ask the government to initiate force on your behalf. I also noticed the article criticized some charities while praising others, so obviously the experiences people have with some charities are better than with others. You don't get to make choices like that when the government is running it.


--------------------


"It is dangerous to be right when the government is wrong."--Voltaire


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Anonymous

Re: More "charity"? [Re: silversoul7]
    #3465603 - 12/08/04 06:09 PM (12 years, 3 days ago)

i sense a downright hostility towards the very idea of private charity which speaks volumes.


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Invisiblez@z.com
Libertarian
Registered: 10/13/02
Posts: 2,876
Loc: ATL
Re: More "charity"? [Re: Xlea321]
    #3465861 - 12/08/04 06:43 PM (12 years, 3 days ago)

Quote:

Alex123 said:
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.



Wow. Sounds terrible. You mean to tell me that they might have to take out a loan and be expected to pay it back? Or not go on vacation? This sounds so terrible.


--------------------
"Of all tyrannies, a tyranny exercised for the good of its victims may be the most oppressive. It may be better to live under robber barons than under omnipotent moral busybodies. The robber baron's cruelty may sometimes sleep, his cupidity may at some point be satiated; but those who torment us for our own good will torment us without end, for they do so with the approval of their own conscience." - C.S. Lewis

"I would rather be exposed to the inconveniencies attending too much liberty than to those attending too small a degree of it." - Thomas Jefferson


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InvisibleGreat_Satan
prophet of God
 User Gallery

Registered: 09/05/04
Posts: 953
Re: More "charity"? [Re: z@z.com]
    #3466098 - 12/08/04 07:14 PM (12 years, 3 days ago)

So everyone has to learn how to take responsibility for investing their own money. Something I've been doing for a while with great success. I wrote something here already about REITs and bond funds which I'm sure most people here forgot.


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InvisibleVvellum
Stranger

Registered: 05/24/04
Posts: 10,920
Re: More "charity"? [Re: silversoul7]
    #3468411 - 12/09/04 02:02 AM (12 years, 3 days ago)

I understand how the government sucks, but I fail to see the practicality of private charities to alleviate poverty on a massive level and to help others towards financial indendence/success on such a scale. We have poor people all over the place and we have massive amounts of capital out there, so whats preventing the wonders of private charities to reducing poverty now? Sure, there are many wonderful examples around the world of such, but it's hardly making a dent. I think it's because people generally dont give a fuck about others so much so that those who do help out and develop charity foundations are drowned in a sea of selfishness. I dont think private charity is a viable solution - not yet anyways.


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OfflineGazzBut
Refraction

Registered: 10/15/02
Posts: 4,733
Loc: London UK
Last seen: 4 months, 3 days
Re: More "charity"? [Re: Vvellum]
    #3469165 - 12/09/04 08:14 AM (12 years, 3 days ago)

Quote:

I understand how the government sucks, but I fail to see the practicality of private charities to alleviate poverty on a massive level and to help others towards financial indendence/success on such a scale.




Exactly. I think it depends on priorities. Some people look at the state of modern society and are appalled by the level of poverty that exists and try to deal with this becomes a primary focus whereas some feel that an intangible concept of the individual being sovereign over all else is more important and that becomes their primary focus.

As you go on to mention, the general level of selfishness that currently exists in society means that private charity has little help of meeting the needs of all those in society who are deserving of assistance. Its almost ironic that those who champion private charity are those who put themselves first...


--------------------
Always Smi2le


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InvisibleRandalFlagg
Stranger
Registered: 06/15/02
Posts: 15,608
Re: More "charity"? [Re: GazzBut]
    #3469431 - 12/09/04 10:11 AM (12 years, 2 days ago)


I think it depends on priorities. Some people look at the state of modern society and are appalled by the level of poverty that exists and try to deal with this becomes a primary focus whereas some feel that an intangible concept of the individual being sovereign over all else is more important and that becomes their primary focus.

Income redistribution tends to breed a dependency amongst the non-productive people who are receiving aid. It also penalizes productive people by taking a signifigant amount of their money away from them.

But, if you don't give anything to non-productive people, some bad things can happen too. Some poor people will resort to crime to get what they want, some will be genuinely good people who are in need of help(and they will get none or little), and some people might flat out die because they are sick and poor.

Any path of action will have pros and cons. Life is like that. Things are never clean, easy, and "black and white". While I dislike income redistribution, I realize that being an "anti-income redistribution purist"; or any type of purist for that matter, will interfere with a realistic view of the world.


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InvisibleVvellum
Stranger

Registered: 05/24/04
Posts: 10,920
Re: More "charity"? [Re: GazzBut]
    #3469620 - 12/09/04 11:12 AM (12 years, 2 days ago)

I think those who support the total slashing of all social spending in favor of private charities havent stepped foot into a battered woman's shelter or the local animal or homeless shelter or drug addiction clinics that often so strapped for cash they are ineffective and often shutdown. Why hasnt the free-market private charity model worked in these instances? Because people dont give a shit.

Until people do actively support charity, I have no problem with tax dollars funding social services - either private or public run. That is the cost of living in a decent country, in my opinion.


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InvisibleXlea321
Stranger
Registered: 02/26/01
Posts: 9,134
Re: More "charity"? [Re: ]
    #3469792 - 12/09/04 12:03 PM (12 years, 2 days ago)

i sense a downright hostility towards the very idea of private charity which speaks volumes.

So you see no problem with people being treated like this woman describes?

That kinda speaks volumes too.


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


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Invisiblelooner2
ABBA fan

Registered: 06/20/04
Posts: 3,849
Re: More "charity"? [Re: Xlea321]
    #3470017 - 12/09/04 12:54 PM (12 years, 2 days ago)

That kinda speaks volumes too.

No, it really doesn't. A private charity is dependent on the funds of individuals. If they feel a charity is not performing its duty, they will instead donate to another charity which has its act together.


--------------------
I am in love with Acidic_Sloth



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InvisibleXlea321
Stranger
Registered: 02/26/01
Posts: 9,134
Re: More "charity"? [Re: looner2]
    #3470064 - 12/09/04 01:05 PM (12 years, 2 days ago)

If you are happy charities treat people the way this woman describes then that really does speak volumes.


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


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InvisibleAutonomous
MysteriousStranger

Registered: 05/10/02
Posts: 901
Loc: U.S.S.A.
Re: More "charity"? [Re: Xlea321]
    #3470503 - 12/09/04 02:36 PM (12 years, 2 days ago)

What are YOU doing to help others through your own actions and your own wealth?


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"In religion and politics people's beliefs and convictions are in almost every case gotten at second-hand, and without examination."
-- Mark Twain


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