Help Tani, Help Yourself: One of the... - Tourettes Action

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Help Tani, Help Yourself

catherinem profile image
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One of the reforms that the condemns want to push through pretty sharpish is an overhaul of the House of Lords, yawn, you probably think that this is a good idea, a load of posh musty types, “fnaw, fnaw, fnaw old boy” who enjoy a good afternoon nap, I’m in agreement if they are there for snoozing they should perhaps give up their seat for another but currently the House of Lords contains a good mix of people, of course you have your old skool Lords grabbing a few zzzs at the back, you also have a number of Tory peers ( ex-Tory MP’s – usually a bit posh), your Labour peers who amongst their numbers are a lot of grammar school boys made good and solid working class types who have climbed up through the union ranks and are still very much in touch with the communities that they came from, the non-descript Liberal Democrat peers and the important ones, well important to us the Crossbenchers, these guys come from all different walks of life and have no allegiance to a political party. So this is how it works at the moment, say for example the Condemns put together a bill that calls for the banning of clowns from public spaces. After discussion in the House of Commons where the Tories and Libdems of course call for the banning of clowns in public places the Labour MP’s oppose see this as a cruel bill that infringes on the human rights of clowns, the bill then gets passed to the House of Lords, again, the Tory peers support the banning of clowns in public place, “toeing the party line” as they say, ditto for the Labour peers, they follow suit from their colleagues in the House of commons, so that means the people who will be making the final decision will be the crossbenchers, meanwhile clowns all over the UK will be emailing their local Lord, or Lord Coco, the retired clown to support them, as the crossbenchers a neutral, they can make up their own minds on this issue. If you just swap the Clown bill with the Welfare Reform bill you can see now what’s going on. The Lords Reform in a nutshell basically involves having in the House of Lords the same proportion of various party peers as there are currently sitting in the House of Commons. (Ummmm….not enough crossbenchers to make a difference, somehow this doesn’t make things very fair anymore). Well, my point is that one of the key players on our side with regards to the Welfare Reform Bill (WRB) is paralympian Dame Tani Grey Thompson (see picture) she has been working tirelessly with regards to the proposed changes to DLA and now she’s working on an inquiry about how the new Universal Credit that will be rolled out next year will affect people who are either disabled themselves or are the parent or carer of a disabled child. I’ve read through quite a bit of the paperwork relating to Universal Credit and it ain’t good. Yesterday I read through a report put together by the Citizen’s Advice Bureau, Disability Rights UK and the Children’s Society. Here’s the report if you’d like to read it: citizensadvice.org.uk/index... If you haven’t much time, here’s two scenarios I’ve lifted from that report which would apply to many of us ticcers, not just us adult ticcers but kids also. So here’s the first one, remember, that even though the condition mentioned is Autism, Autism could quite easily be replaced with TS.

‘Janet’ is a lone parent – she lives with her son Jack who is 13 and was diagnosed about10 years ago as being on the autistic spectrum. He receives the middle rate of the care component of DLA and low rate mobility.

Janet’s partner left about eight years ago – he found it very difficult to cope with Jack. Jack also has learning difficulties. He has very demanding routines which mean that he needs a lot of support to get out of the house in the morning and get to school. Despite his age, Janet is unable to leave him alone for even short periods of time because of the risk he might endanger himself. He is particularly fascinated by anything electrical and has destroyed a number of electrical

appliances by experimenting. Janet must be there when he gets home from school and needs to get any jobs such as shopping done while he is at school as it is very difficult to take him with her. They live in a three bedroom housing association flat which she has lived in for the past 10 years. She pays rent of £100 and council tax of £20 a week. Janet also has an older child Anne aged 20

who lives and works about 200 miles away but who visits when she can. The help she gets when Anne comes to stay is the only respite care she gets so she is very reluctant to move to a smaller property as it will be much more difficult for Anne and her partner to stay.

Current system

• In the current system Janet has a disposable income if not working of £243

a week. She only sees a gradual gain until she works for 16 hours earning

£100 when she has a disposable income of £277.

• Because she is a carer she receives an allowance and also has a carer’s addition

of £33 added to any means tested benefits. However under the current

system she loses these if she earns more than £100.

• Working more than 16 hours she is likely to need expensive childcare so gains

almost nothing from working more hours.

New system

• She will have £212 if not working, £31 worse off than under the current

system – mainly due to the reduction in the disability addition for children.

She will see a gradual gain for increased earnings which will gradually reduce

the difference between the current system and universal credit. She continues

to be eligible for the carer premium in universal credit when she earns above

£100 unlike in the current system so the gap continues to reduce until she

has childcare costs.

• However once she needs childcare, the gap widens again as she is likely to

lose income the more work she does

In addition to this income drop, if she lives in a three bedroom property owned

by a housing association, then she will lose a further £14 from her universal

credit as she will have a deduction from the amount allowed for housing as she

only is entitled to help with the cost of a two bedroom property.

• Lone parents not entitled to the carer addition but who have

a disabled child will be much worse off.

If Janet’s son Jack had a condition such as a serious heart condition and was

entitled to high rate mobility and low rate care, Janet would not be entitled to

receive the carer addition because the person you care for has to be receiving

middle rate or higher rate of the care component of DLA – that would mean

that the gap between the current system and universal credit would

be £33 wider once the earnings limit in the current system is passed.

In other words, when earning £150 with childcare costs of £80

Janet would have a disposable income of £229, £51 less than in

the current system.

• Many couples with a disabled child where one of the couple is earning

will be better off under universal credit

If Janet’s partner had stayed and one of them was working whilst the other

was a carer for Jack, so they didn’t have childcare costs then the drop in income

between universal credit and the current system will continue to reduce as the

earnings increase. If the person who worked earned more than £300 gross

income a week then the couple will be better off under universal credit despite

the reduction in the disability addition.

There is also a table on the original document that I was unable to copy and paste that if you’re a parent of a ticcer you may find helpful to read.

The next scenario applies to single people with TS that are under 35. Again the conditions mentioned could be quite easily exchanged for TS and any co-morbidity.

‘Steve’ lives on his own and has been diagnosed with clinical depression and OCD; has just returned to work having been found fit for work, having spent a period in the WRAG12 of ESA.

Steve is 30 – he has a history of anxiety and depression and has struggled repeatedly to stay in work. He now works as a sales assistant at a supermarket in the town-centre, working 35 hours a week. The manager is very supportive and Steve has been employed there for about two years– the longest he has managed to stay in work since he left school. He lives in a privately rented

one bedroom flat. He has a family bereavement which leads to him becoming increasingly depressed and anxious again and he has to take sick leave. He is diagnosed with clinical depression and OCD. When he claims ESA, he is placed in the WRAG. A couple of months later he is keen to try a phased return to work and over the next few months he gradually builds up to four hours a day. Just before this he is called for another medical and at this he is found fit for

work, but he is able to claim the disability element of WTC as he is working four hours a day. He tries to increase his hours further but finds that his anxiety and depression rise. He fears if he increases beyond 20 hours a week that he would not be able to cope – his condition would worsen and he would be unable to work at all.

Current system

• Under the current system, during the period when he is unable to work

his disposable income will drop to £99 a week.

• However when he returns to work part-time he will be eligible for the

disability element of WTC – this will give him a disposable income of £146

a week. This enables him to cope with the extra costs of working part-time,

such as the extra travel costs incurred in only working a few hours each day.

New system

• Single people who do not have a disability are likely to be better off on

Universal credit, but for disabled people found fit for work, the loss of any

extra in-work support is likely to leave them about £40 worse off under

Universal credit.

Housing costs

• Steve would only be allowed help with his housing costs at the rate available

to those who live in a bedsit and share a kitchen and bathroom. This is about

£40 less on average than the amount allowed for a one bedroom flat. Even if

he could find a room in a shared flat, Steve believes his condition would make

sharing a kitchen and bathroom impossible. Whilst he might qualify for help

through the increased discretionary funds this is not guaranteed, and may

well be very short term just to allow him time to find somewhere cheaper.

He may also be unaware of the availability of discretionary support. There is

a real danger that people in this position will end up homeless.

Again, there is a table in the original document but I was unable to copy and paste it.

Back to Tani, as I said earlier she’s putting together an enquiry into Universal Credit and disabled people, this is where you come into it, she’s put together a couple of surveys online, on the CAB website, so please, help Tani, help you by filling in the questionnaire to help her build up a picture of how people with disabilities need the extra money they currently receive. So if you haven’t already completed it, you’ll find the questionnaires here. citizensadvice.org.uk/index... Scroll down to were it says “Respond to the Review”

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