Money survey for parents of disabled children

[Matt Carers UK]

This in from Contact a Family - the charity for parent carers.

[quote]Counting the Costs – how are your finances in 2010?

Finances can be a major concern for families with disabled children.

In 2008 Contact a Family asked families about their finances and the results were shocking, with one in six families reporting that they were going without food and heating.

Now, two years on, we would like to ask families about their finances again so that we are able to demonstrate if and how things have changed. There is a lot of talk that the economy has turned a corner and things are beginning to improve. But we would like to know what the experience of families with disabled children is.

Counting the Costs 2010 – a Contact a Family survey of families with disabled children’s finances will hep us to raise awareness of the money worries specific to the families we support and to campaign for change.

Srabani Sen, Chief Executive of Contact a Family, said: “In these recent turbulent economic times everyone has been struggling. But it costs three times more to raise a child with a disability and families with caring responsibilities have greater difficulty working, so are more likely to be living in poverty.

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[AspieMum]

[quote="Matt Carers UK"]This in from Contact a Family - the charity for parent carers.

[quote]Counting the Costs – how are your finances in 2010?

Finances can be a major concern for families with disabled children.

In 2008 Contact a Family asked families about their finances and the results were shocking, with one in six families reporting that they were going without food and heating.

Now, two years on, we would like to ask families about their finances again so that we are able to demonstrate if and how things have changed. There is a lot of talk that the economy has turned a corner and things are beginning to improve. But we would like to know what the experience of families with disabled children is.

Counting the Costs 2010 – a Contact a Family survey of families with disabled children’s finances will hep us to raise awareness of the money worries specific to the families we support and to campaign for change.

Srabani Sen, Chief Executive of Contact a Family, said: “In these recent turbulent economic times everyone has been struggling. But it costs three times more to raise a child with a disability and families with caring responsibilities have greater difficulty working, so are more likely to be living in poverty.

â€

[Matt Carers UK]

Turns out the survey is now closed.

My post was in Feb so not surprised it's now over. I'll try in future to make sure I put closing date on the post itself.

[charles47]

The survey results are here: Contact a Family

Key findings include:

•Almost a quarter are going without heating (23%). Up from 16% in 2008.
•One in seven (14%) are going without food. Down from 16% in 2008.
•More than half have borrowed money from family or friends (51%) to keep financially afloat or pay for essentials, such as food and heating. Up from 42% in 2008.
•More than 40% have applied for a charity grant. Up from 25% in 2008.
•Almost three quarters (73%) are going without days out and leisure time with the family. Up from 55% in 2008.

Interesting findings given the current political climate.

[AspieMum]

The survey results are here: Contact a Family

Key findings include:

•Almost a quarter are going without heating (23%). Up from 16% in 2008.
•One in seven (14%) are going without food. Down from 16% in 2008.
•More than half have borrowed money from family or friends (51%) to keep financially afloat or pay for essentials, such as food and heating. Up from 42% in 2008.
•More than 40% have applied for a charity grant. Up from 25% in 2008.
•Almost three quarters (73%) are going without days out and leisure time with the family. Up from 55% in 2008.

Interesting findings given the current political climate.

And they are talking about cutting back carer benefits?! What more do they expect out of us.

[Scally]

Its alarming, but the methodology is deeply flawed, because it isnt a random sample. The folk taking part are highly motivated self-selected carer-activists who know fine well that this isnt about social science, its about politics.
Good campaigning if you want a quick and dirty tabloid headline, poor science if you want to understand the real picture. The combined impact of Child and Working tax credits on ordinary families with children with disabilities has been transformational, in my own observation.

Suggested tabloid headline: In The Red: Hot Child Carers - Who Pays The Pauper?
(with picture of cute momma looking sad, ideally wearing stockings and suspenders)

[charles47]

You can argue the same for CUK reports, Excalibur, or any other charity. For that matter, most Green Papers use selective methodology to push a particular agenda.

I'm sure any suggestions on methodology would be welcome.

[AspieMum]

You can argue the same for CUK reports, Excalibur, or any other charity. For that matter, most Green Papers use selective methodology to push a particular agenda.

I'm sure any suggestions on methodology would be welcome.

The only way to cover everyone is to put the survey in a census everyone in the whole country has to fill in.

[Scally]

The only way to cover everyone is to put the survey in a census everyone in the whole country has to fill in.

Yes, but that wouldn't be quite as much fun or make so much mischief.
Actually, the census does contain enough data to find out whether the parents of children with disabilities are any worse off than other parents. Definitively. And I would like to know why we are always being bothered with these membership surveys when they are clearly statistically unrepresentative - its just lazy methodology and the politicians can see right through it. So why waste our time: what matters is our individual stories, not this kind of third rate research.

[Eileen 40]

we are wost off now we are short to paying our monthly bills and nothing left for food. i dont no what we are going to do .we have reduced bills we will even have to get rid of the tv and washing matchine as we rent them .as we have never been abel to afford to buy them.even then we are still well short and bo money for food . i dont know what we will do.im trying to find a job as we cant get any thing from the goverment.

[Sparklingtechie]

I must be the odd one out. Since having DLA as well as carers for my 2 disabled childrenIno longer hae to worry that I can't afford the heat or food. Granted I do not drive so I save costs there and I was fortunatly to have claimed for Steven when they still did back pay and I got a fair bit and put it in the bank, where it still is. Yes I still have to replace furniture etc more often than families without disabiled children (due to older ones distructive tendencies) and yes there are holidays I have to pay in full (and takes a while to save up)as even with disabiled kids I don't get any kind of allowence, but over all compared to 10 years ago when I was getting nothings more than income support life has improved at least 50% finacially. but not once in these 10 years have we goen without the basics of food water and heating...oh that reminds me *pay water bill today*.

[Scally]

I don't think you are the odd one out.
Poverty is clustered in certain groups of the population, that is true, and apparently child poverty is on the increase as unemployment rises and inflation starts to bite. Fuel costs are higher in Scotland and the north, whilst housing costs are generally lower. But poverty is also partly related to education and skills, (such as the ability to put a cheap but nutritious meal together from raw ingredients, or mend and darn clothes) semi-random life circumstances and life-choices (such as running up large debts on credit cards to buy stuff you don't really need like alcohol and drugs and then getting so depressed about the debt you let it all drift).

Nevertheless the system of child tax credits and working tax credits has made a huge difference to many families on lower incomes, and at least in straightforward cases, our disability and housing benefits make a very useful contribution to household income.

[AspieMum]

I must be the odd one out. Since having DLA as well as carers for my 2 disabled childrenIno longer hae to worry that I can't afford the heat or food. Granted I do not drive so I save costs there and I was fortunatly to have claimed for Steven when they still did back pay and I got a fair bit and put it in the bank, where it still is. Yes I still have to replace furniture etc more often than families without disabiled children (due to older ones distructive tendencies) and yes there are holidays I have to pay in full (and takes a while to save up)as even with disabiled kids I don't get any kind of allowence, but over all compared to 10 years ago when I was getting nothings more than income support life has improved at least 50% finacially. but not once in these 10 years have we goen without the basics of food water and heating...oh that reminds me *pay water bill today*.

Many disabled people are going to be transferred onto PIPs with assessment appointments (like with incapacity benefit being changed which has led to many who are not fit for work being told they are fit for work and getting their benefits back at an appeal in future they will have to represent themselves at as legal aid won't be an option). Children will eventually be transferred too. If the disabled lose their disability benefits those caring for them will no longer count as carers and will have to go back to work full time whether they have the time for it or not and in the meantime will be treated as ordinary unemployed people most probably.

[Scally]

Thats right, and of course there have to be boundaries between what is a disability and what isnt, in terms of the impact on both costs and ability to earn (directly or indirectly through caring). Its also inevitable that these definitions will be subject to regular revision by successive governments, and in the light of medical science. For example awareness of conditions such as CFS or Asbergers Syndrome are fairly recent, historically speaking, and people with this condition may have been wrongly diagnosed or not diagnosed at all in the past.

I think living on unemployment benefit, income support, housing benefit etc is just about possible but it must be incredibly tough for childless single people or couples in that situation. Those with children receive child benefits and tax credits, which form a very significant boost to income, and are generally a bit better off. Those on minimum wage jobs are often not really much better off working at all, the huge difference comes when there is a decent earned income coming in to the household as well as disability benefits. And income is closely related to education, and ideally to being in a good relationship as a couple - single parents will always struggle.

[AspieMum]

Thats right, and of course there have to be boundaries between what is a disability and what isnt, in terms of the impact on both costs and ability to earn (directly or indirectly through caring). Its also inevitable that these definitions will be subject to regular revision by successive governments, and in the light of medical science. For example awareness of conditions such as CFS or Asbergers Syndrome are fairly recent, historically speaking, and people with this condition may have been wrongly diagnosed or not diagnosed at all in the past.

I think living on unemployment benefit, income support, housing benefit etc is just about possible but it must be incredibly tough for childless single people or couples in that situation. Those with children receive child benefits and tax credits, which form a very significant boost to income, and are generally a bit better off. Those on minimum wage jobs are often not really much better off working at all, the huge difference comes when there is a decent earned income coming in to the household as well as disability benefits. And income is closely related to education, and ideally to being in a good relationship as a couple - single parents will always struggle.

When it comes to someone who is a carer its not just the loss of income if their disabled person is denied PIPs when they need it (be it a mistake or a bad assessment system that doesn't correctly assess the person) as unless they can hold down a full time job and keep caring they are going to be faced with the prospect of not being allowed to provide the person with the care they need at short notice or no notice at all because they will be expected to get a job, even if the start time gives you little or no notice, that is full time, go on all schemes for the unemployed, etc. That is unless the carer has a partner who is in work with an income that would make the inelligble for Job Seekers bit of Universal Credit/Job Seekers Allowance, is over retirement age, under 16 or disabled and is assessed as unable to work.