EDCM Campaign against cuts to benefits paid to parents of disabled children

[KateMumsnet]

Hello

Today Every Disabled Child Matters, with whom we worked on our Respite Care Campaign, is calling on the government to rethink its decision to cut support for up to 170,000 families who have disabled children.

The Welfare Reform Bill proposes to cut benefits paid to low income or out of work families with disabled children by 50%. This amounts to a drop of £1400 per year - although these families often face higher basic costs than others, and may also find it harder to get employment which allows them to continue caring for their children.

If you'd like to write to the PM and ask him to reconsider, EDCM have made it easy to do so via this link. And don't forget to let us know what you think here on the thread.

Thanks

MNHQ

LMAO at people begrudging activities the kids get.

Do you think ds3 (or for once I will humanise them with their actual names) HARRY would choose to attend an SN school way outside his community so he has not one friend he can see for tea etc- we can't invite anyone on his behalf as A0 theya re all similarly disabled and B) we don't get to take him to school so have no idea who these children actually are. Parks won't work- apart from whatever angry dads you might meet (one of the biggest positives about Sam, ds1, now being educated outside the village is that I no longer have angry Dads banging on my doors shouting at me) but last time we went to one without 1-1 for all 3 spectrummy kids Sam found a half filled bottle of what looked like murky ditch water and drank it.

Not that Sam goes anywhere as he can't cope with any formal groups (NAS may be allocating him a befriender soon) and the last thing I want is for Harry's social inclusion to drop to that level.

Maintaining social skills + a support network + physical abilities (eg Glitta's riding therapy) can = better independence skills long term and a huge minimalisation of state dependence.

Besides, there'sa thread running ATM where a poster (Gay40) is saying she would never employ a former carer and other employers wpuld not either- as I am desperate to get to work next May, well stuck in the middle tehre I am fucked aren't I?

Ellisbell I get your point and will look but please be aware that receipt of TCs and DLA does not mean we don't work as a family; DH works very ahrd thank you, we both did when feasible and will again soon God willing.

"At a time when many people face losing their jobs and many people are facing a cut in their standard of living those who rely on benefits need to recognise that every penny you receive comes from others working hard to support you. Many people are essentially decent, others wish to be seen that way but ranting at them will not encourage support nor will articles about losing riding therapy impress those who have never been able to afford riding lessons for their children. "

carers work very hard. 24/7 as for riding therapy. that isn't the same as riding lessons for a nt child.

And also those who rely on benefits need to recognise that every penny you receive comes from others working hard to support you

What about how bloody hard I worked before I had a disabled child???? What about all the financial contribution I made then?? Or doesn't that count anymore??

^sorry I meant carers not I, obviously. I didn't mean to personalise it, it was a general comment^^^

ellisbell, your post is naive. I worked hard for years before and whilst having dcs, my dh works hard now, I work hard now looking after my ds as we are unable at this time to use childcare.

Comparing riding therapy to riding lessons for an nt child, is just daft.

you do understand what 'therapy' means dont you Ellisbel?

And if you think you work hard to provide a disabled child with the £100 the Govt are planning to remove from families with disabled children, think how hard you will work to pay the £3000 a WEEK when those families break and are forced to put their children into care.
ffs

have not read in depth hope this is OK

But a synopsis:

1. Loss of TC disability aptment for famillies with a child claiming MR Care (that really means disabled but not needing 24/7 waking care- so sleeps between 11 and 6 but ahs no speech or movement would equate to this in some cases: in practice it means a great many children with LD and ASD).

DLA is paid for the child's direct benefit: TC is used to pay for the wider consequnces of caring- loss of an income or part of one; extra fuel bills from heating a home being at home all day / medical needs, preparing 4 different meals in an evening-- that sort of thing.

1. When Universal Credit comes in, apart from DLA (at the moment) parents like me and Glitta will have to choose just one of our disabled children to receive help: this is potentially devastating, how do we do that? My boys may have the same dx but they are incredibly different in needs or presentations. It's not ahrd to see that having multiple disbaled children makes you more vulnerable surely?

1. UC will force most carers to HAVE to work for 20 hours a week or lose all benefits / complete workfare- workfare that requires you to locate childcare that does not exist or lose any income. They can for example put you on night shiifts. Also all help ends at twelve for childcare: I am not convinced any child should be latchkey at 12 but one with ASD? An aggressive, eating disorder-led, AS child such as my Sam who can;t even walk next door with a Christmas card aged 12? Or harry or who could not even speak well enough to call 999 in an emergency (Harry gets the MRC that would require this sam doesn't atm, he gets HR but very few people are having that renewed).

1. Whilst the number of hours requirement to get tax credits from 2012, which rises in April, has been dropped for single aprents or where one has been taken out by disability or sickness (and rightly so) families where one person has lost their working ability from caring do not have any protection: this IMO makes them more vulnerable to falling through the gaps as they hae half the ability to find that work of other couples.

1. This artcile flags up possible Human rights contraventions within the act-

Human Rights Concerns

[[www.parliament.uk/.../Carers_UK_Welfare_​Reform_Bill.pdf

this is also good]] although carers seem to have lost some conditionality protection since then

At the moment it is well recognised that after additional costs carer families are far likelier to be in poverty. not becuase we didn't bother working or didn't try at school (as a Graduate with a post grad many of my fellow carers make me look under qualified), but becuase there is NO childcare, very few jobs for those working around SN transports and school hours... I have to be ehre to accept ahndovers at 8.30 and 3.15 regardless.

And of course even getting recognised as disabled is ahrd: my lovely Dh battles long term MH problems. He hasn;t used this to avoid work but post redundancy has retrained to enable him to work in a way he can sustain with his meds/ health. That's sensible right? Exactly how it should be. But keeping wotrk flowing in self employed in this climate is a challenge. If it drops off under U/ Credits from 2013 he could face workfare; if he did not attend (and he wouldn;t, he'd end up crying in a car prak with police looking for him- again) he would lose us all income bar whatever PT work I can manage; so we would lose our privately rented house and not eat.

Don't eat, have kids taken away.

If I can't find work and get put on workfare there is nobody who can take boys- Dh will be working or face workfare himself, Mu min England and caring from Grandad, sisters work FT, Sam over 12 which is cut off age for viillage nursery adn childminder even if he weren't aggressive.

Don't turn up at workfare- lose income- children taken away.
Turn up at workfare- nobody at home with children- children taken away.

You see the problem?

Now, as I have said before, anyone who can offer about 20 hours a week work after May (when DH compelte his retraining) to someone with a degree and almost and MA in Autism in the SE Wales are PLEASEe head this way! Charity background. Because that is my plan - dig us out single handedly. But if I can't- and in this jobs climate well yes- then we seem effed frankly. I did look into setting up for myself but landlord's insurance said no.

'And also those who rely on benefits need to recognise that every penny you receive comes from others working hard to support you '

I shal make sure my disabled child tugs a forlock when we pass you oh mighty taxpayer. Oh wait, not only can she not move a limb, being totallyp aralysed, we worked and paid taxes for years and still do.
Or do you resent paying NI which is wht you pay to cover should you become disabled or your child? It could hapen to you this afternoon. It happenend to a friend of mine last week. She lived in blissful ignorance until last wednesday when her child had a stroke. Thank fuck for NI which will support her family as they go through this awful time.

I used to be a higher rate taxpayer. Sigh.
And a homeowner.

We were homeowners and had I not been a carer I;d be teaching now and where I am that's a living salary (God Bless Wales!0, let alone DH's former position as a Transport Manager.

we would also have been higher rate tax payers by now but dh had to go part time, like many Carers, in order to Care.

I worked and payed tax from the day i left school until i had to give up work to look after my dd2, so i have payed my way, why shouldn't we get help when we need it?

These cuts they are going to make will have a huge effect on my family, i drive my dd to the hospital once a week for therapy, the hospatil is an hours drive away, it cost's me a fortune to drive there and back, each week her therapist suggests things i should buy my daughter to help with her sensory nedds (gym balls, vibrating toys, a special seat, a weighted blanket) these items cost a fortune and i can not provide my daughter with all these things even though i know they will benifit her. I then get told by her speach and language therapist that dd2 would beniffit from after school clubs to improve her social skills, horse riding to improve her low muscle tone and dance classes to help with her hypermobility but i cant afford to take her, she would need a carer to go to brownies or after school clubs which costs money .

My dh works part time out of the house and part time (self employed) at home, i am unable to work as i can not find a understanding boss who wont mind me taking dd2 to at least one appointment a week, plus the risk of school phoning me up to come and collect dd2 early as she's unable to cope (like today when i have to keep her home as she cant cope with everything going on today).

According to the changes we are going to lose £25 a week from our bennifits, this may not seem much to some but to someone with disabled children £25 is a lot of money.

I used to be a tax payer, and a home owner. I used to be respected. I used to sleep well. I used to know the future was straightforward. Then everything changed. It can happen to anyone.

Have added my name to the campaign and forwarded the letter to the PM, not hopeful, it seems to be the bankocracy are to be rewarded for their failures whilst the ordinary people suffer and the vulnerable in our society suffer the most.

Have signed it for both myself and DH.

I hate all the bleating on about how your taxes pay for my childs benefits. How do you know that it is your taxes that have ben allocated for that individual? How do you know that the parents do not work themselves? Not everyone with a disabled child (or a disabled adult for that matter) cannot work. Having a child with a disability often leads to extra expenses, SN toys cost an arm and a leg, whereas the NT equivelant is only a quarter of the price. A NT child can have a bed bought from Argos/Ikea whereas some children with SN need specially adapted beds that can cost £1000s. Thi is where the unjustice lies with the benefit cuts. It's not a case oh "ah diddums, I migh have to get off my arse and actually work" it's a case of "oh shit, how am I going to be able to afford to heat my house and buy the much needed equiptment.therapy to allow my child needs to make heir lives that tiny bit better".

ellisbell
I get what you are trying to say, and am hoping that you have expressed yourself wrongly.

And it is normal for those with disabled children now to be offended and upset by your post - and to be defensive.

What I think you are saying is that you would like more information about these cuts before writing to your MP.

And I do see your point about riding lessons appearing frivolous, if they were just lessons. Perhaps it was a bad example.

Anyone who just glanced and that article and didn't read the blog about why this THERAPY is so important for Glitter's DS, might think, "I can't afford to pay for riding lessons, why should we subsidise other childrens' lessons".

This is our biggest problem - that so many people are misinformed, either deliberately by the press, or from half-understood comments that someone has made.

Those of you who will be personally affected by these cuts will have a lot of explaining to do, and that is shit because you have so much other stuff on your plate.

DC is lying about the cuts on PMQ - he's apparently said that they are not being cut at all and will be increased by 5%

Why has nobody pulled him up on it? They all know the WRB is being discussed again today and they should have a rough knowledge at least of what is in it!!

Oh, and as to the comment about paying taxes to pay for benefits -

That is what is called living in a civilised society, where we take care of those who are less fortunate than ourselves.

Benefit fraud is actually really very rare, despite what the press would have us believe, so the argument that we are funding scroungers, is just plain bogus.

Avadvent - he made use of the term 'benfits' as it's an element of the Tax Credits being cut, not benefits.

Still a barefaced LIE imho though - he knew what she meant when she asked (don't recalls the MP's name)

Slimy lying GIT

Ellisbell Have you seen this? toomanycuts.blogspot.com/2011/12/does-every-disabled-child-matter.html

This is Glittaknicazs full story, the newspaper article didn't portray the whole picture, as they never do...hopefully by reading it you'll gain a better understanding

At ellisbells comment.

THAT is the sort of misinformation we as carers to disabled dc, or adults with disabilities themselves face EVERY DAY. THAT is the sort of comment I get when I have to try to find the money to replace my pillows. Because "No-one needs to spend over £100 on pillows". Well, YES, someone with uncontrolled epilepsy who has nocturnal seizures DOES need to spend over £100 on pillows - if they are specially-made, ANTI-SUFFOCATION PILLOWS. That need replacing after a maximum of 6 months use. Yet I no longer get any disability benefits, no ESA because ATOS deemed me fit for work, and because I am fit for work, I obviously (great sarcasm there...) do not have extra needs that cost me extra money, so I don't need DLA any more.

So out of the same money as any other Lone parent gets, I have to fund £200 a year just for PILLOWS.

THAT is the sort of comment I get when I have to spend ANOTHER £30 on a blazer for DD because she has chewed the sleeve yet again, and will get a detention if her uniform isn't perfect. And if one more person tells me that she will learn if I 'let' her do the detention. She doesn't. She has done the detention, then chewed another hole in her blazer ON THE WAY HOME from the detention.

Riding THERAPY. The clue is in the name FFS.

So glad I missed Ellisbell's comment :(

And FTR, I used to earn more than DH. I have a 1st class degree and postgrad qualifications like many others here.

As for therapy - I've been getting sessions in a lovely swimming pool free on the NHS, myself. I'm sure Ellisbell and others think that this is a frivolity but I've actually been doing some quite painful exercises to improve my core stability. It's THERAPY. I have a joint disorder and caring for my boys has really taken its toll on me, physically. Of of the boys has definitely inherited it from me and i suspect that the other one has, too. If we had local access to any activity that would help them to not end up in the pain I'm often in as adults, then it would be worth the cost - and that would include riding therapy. My only difficulty is that I can only take one boy at a time to anything like this, so it ends up not happening because of lack of suitable childcare.

Paying taxes for other people is an interesting one.

I always viewed it as paying taxes so I would be protected should we need help: and as anyone can, i think that is a sensible approach.

This was the email I got back from Michael Ellis this morning. I don't really understand too much of the whole thing to be able to do anything with it. Not having a disabled child I don't understand much of the abbreviations used either. MRC,PIP, whatever.
I'm just copying his e.mail here in the hope that someone more informed than me can do anything with it.

If there is anything you want me to write to Michael Ellis, I will of course gladly do so. PM me and I will pass it on.

Dear

Thank you very much for your email regarding benefits for families with disabled children.

Please let me assure you that I am very much concerned that this Government does all it can to support families with disabled children ? and we are doing this.

The plan that you have seen is part of the Universal Credit, which is a policy being brought in by this Government to bring greater rationality to the benefits system and to ensure that work always pays. The current system has become so complex (over 50 different types of benefit for example) that most do not understand it. It is not the case, however, that families with disabled children will see their benefits cut in half.

Firstly I will point out that DLA for children is unaffected by the proposed Universal Credit reforms. I believe these planned reforms are important. They mostly are aimed at reforming the way workplace benefits are paid and will ensure that work pays. At the moment, if you are offered a job paying less than £15,000 a year you are better off staying on benefits! Under the Universal Credit you will be better off working, even if you work just four hours a week, than you would be just on benefits.

This of course applies more to the unemployed than to disabled people. However, allowing benefits recipients to keep their benefits when undertaking just a small amount of work will empower those who are less severe disability to work.

The reference that you have seen to halving benefits to families with children is in fact relevant only to one part of the child tax credit entitlement for those with disabled children.

Those families with severely disabled children will in fact see this entitlement increase slightly from £73.27 a week to £74.50 a week under universal credit. Those receiving child tax credit entitlements for less disabled children will see a reduction in this entitlement but will still be receiving £1,349.40 per year as part of the Universal Credit.

However, even in this case, this certainly will not mean a reduction in half of the amount of benefits that each family can receive. In many cases the Universal Credit will mean that families will receive more money.

Crucially, it is also the case that the Universal Credit will provide transitional cash protection to families when they are transferred to the Universal Credit. This means that those families who are currently claiming a benefit that is reduced under the Universal Credit will be paid additional money to make up the difference. Therefore no family with disabled children will see any reduction in benefits in cash terms.

The Universal Credit makes many vital reforms across the benefits system, whilst protecting families who need our support, and I am therefore happy to support it.

Thank you again for taking the time to write to me. If I can be of assistance in any further matter please do not hesitate to contact me again.

Yours sincerely,

Michael Ellis

--

Michael Ellis MP

Member of Parliament for Northampton North

House of Commons

London

SW1A 0AA

0207 219 7220

[email protected]

1. 'those who are less severe disability to work' Someone paid as much as he probably receives should have better English skills.

1. Less severely disabled = MR DLA; and that equates to NOTHING in terms of ability to work. DS3 has no chance of working and gets MRC; unless he is kept away from cars, other people (he licks them) and supervised 1-1 he cannot do workfare but has to or will starve.