To think that a lot of the time having someone in the family with a disability does mean being long term poor?

[extremepie]

Obviously this is not the case for everyone but it certainly is for me!

I know that families with a disabled member do get extra help in the form of extra tax credits, DLA, carer's allowance ha! etc but aibu to think that due to the often extra expenses that are incurred by having someone with a disability in the family all this doesn't go as far as you might think?

Due to my current circumstances, I am not able to work and I can't see this changing in the near to moderate future unless something drastically changes. This is not unusual, as a lot of us just can't work around all the medical appointments, time off required to look after them etc so working is just not feasible but I hate the idea that this current situation is all I have to look forward to in the future and that my financial situation will not really improve :(

Aibu to think I'm not alone in this and that for a lot of people having to manage the needs to someone with a disability means they are struggle in the long term? In most circumstances if your money situation is tight you can either try and earn more money or cut your expenses but often people with a disabled family member can't do either!

(Its two separate cars/payments/everything, a cheap one and mine. Could have probably made that clearer)

Having normal children is piss easy to be honest. I know I will get in trouble for this, but when my daughter goes to overnight respite (two nights a month) I can't believe how easy it is I dint have to do much at all and my youngest is only 7. I suppose my other children are more independent though than others their age because of the nature of our family? I don't know. I just know it's very different having a normal family, something we only experience two nights a month :o and I generally still deal with whoever wants to talk to me about something concerning her therapy/care/school etc that part is non stop

Brilliant post glint

Having normal children IS piss easy though.

DD is NT, ds isn't. He was a bloody shock when he arrived I can tell ya. I get to experience both worlds. Both have their challanges but DD is certainly a damn sight easier to deal with.

Calmet, I think my eye doctor from GOSH told me 80% of blind have multiple disabilities. And of those people who have VIs, no added problems, a small percentage are totally blind.

I know blind people who have additional things because of Rubella, Usher's, cancer, ASD, etc. Some work, some don't. My roomate isn't here any more to work, she had cancer. :There are limited job options if you are deafblind, a friend of mine who really wanted a job started her own business. She can't hear the phone so she uses email. From her, I know there is a huge shortage of SSPs (support providers) for deafblind.

It's very hard to understand another disability. I went to a school with 750 students, deaf, deaf/sn, blind/sn but blind students rarely interacted with deaf, and both blind and deaf students rarely talked to students with sn. Due to needing more support, I was grouped with sn. We had a lovely dorm mother until they transferred her and then we had a cow who didn't like blind or sn.... Not only did the blind students bully those with sn, the dorm mother was doing it too. My tiny roomate was caught eating in our room and the woman told her she'd get cockroaches and put them in our room to find the food.

My friend has two severely disabled children.
She had to find £5k for a deposit.
Then they wanted to take both the children's mobility allowance for one car.

Most of the people I know who need a WAV (wheelchair adapted vehicle) can't get one because they can't find the deposit.

My friend has to leave her DD's power chair at school because she can't get it home.

Thank you glint for demonstrating that plenty of people do understand our lives and don't just think we walk off laughing into the sunset with our DLA, which is to help with the costs of raising a child with disabilities.

I wouldn't swap my son for the world but I'd have no problem living without DLA and would pay it back and more to have the easier life with no disabilities to be factored into pretty much everything we do as a family.

Also my mental health has taken an extreme bashing this year, getting a SEN school place for my son...it has literally broken my heart. People who haven't been through it, have no idea...

Yes, Maryz, exactly that x

I'm also unconvinced by the 'benefits' of Motability. It seems like a very expensive way to get a pretty standard car. Remember that choice was removed by the Government after Littlejohn's article in the DM where he complained about the quality of the vehicles available. After the frenzy he whipped up the Government capped the value of the vehicles available ignoring the fact that some people with disabilities may want to to use their own money to upgrade their vehicle.

What I meant by time limit on grief was that things like CA are payable for 8 weeks only after a bereavement and I have seen certain changes to widows benefits which mean that you only get it if you are under 45 with kids or over 45 without kids.

Now I know what this sounds like but its something I/we HAVE to think about because COPD puts a strain on the heart and DH has ischemic heart disease too. He has already been told that if he has another heart attack he is unlikely to survive it.

Isn't horrible that we can't even make the most of the time we have with our husbands because the future invades our thoughts. I find myself wondering if I can afford his funeral and how I'm going to cope afterwards. Then I'm left feeling guilty because I shouldn't be thinking like that but can't tell anyone in case they're shocked/disgusted.

Sorry I'm taking the thread if topic there, but those with disabilities or people that care for those with disabilities know that, unlike the little black and white world the bullshitters on here believe in, our lives are much more complicated because of the restraints and difficulties we face. My husband and I had full time jobs and were proud to instil a good work ethic in our boys until a year and a half ago. Do people really believe that Amy of us would choose this life that we now have.

glint, I recognise and have dealt with a lot of that stuff (including driving three hours and staying overnight in hotels for dental treatment, and the ballet lessons saga) but whilst I recognise life can be hard, I really don't want people to be feeling sorry for me or dd2.

Like the other poster whose son is taking A levels and intends to be a research scientist, we have (and will continue to) bend over backwards to enable dd2 to reach her potential. Just like any other parent, of any other child.

The head tilters and 'oh bless'ers who believe they are being sympathetic and understanding by not expecting much of my child are reinforcing the stigma against the disabled in society.

Everyone should be encouraged to reach their potential. And both those who can and cannot work should be supported by the welfare state.

We aren't poor. And we aren't in receipt of benefits. Since leaving the UK for work, we are no longer in receipt of DLA or any other benefit. But statistically, families with disabled family members are lower income. Having volunteered with many pan-disability groups, I know how lucky we are.

Dd2 also wants to compete in the Paralympics.

I won't be showing her the comments on this thread - I actually would like her to reach her potential, despite the brain damage and lifelong disability. I would hate for her to be put off and limit her ambition.

Wonderful post Glint. Thank you for reading this thread and taking the time to think about how others are affected.

Expat knows all too well about the time limits. It was horrible reading about it and feeling so angry and helpless.

That reminds me, the valedictorian for the blind school last year was a Chinese deafblind orphan who was adopted when she was 13. She hadn't been to school until she moved to the US, knew no English and someone asked why she had a "special" diploma.

A special diploma is given to students who can't complete a regular education.

Thank you

Madwoman, I don't think that understanding and empathising the challenges of having a child with additional needs needs to be separate from promoting and maximising an individuals potential, what ever that potential is. I hope my post didn't come across as 'ah bless' to you, because thats not what I think, I was responding to ignorance upthread and the need to understand that DLA is paid for a reason. When you look at quality of life studies, children with a disability come out the same as the rest of the population, however mothers come out consistently lower. Life is tougher, but you still have hopes and dreams. I love working with children/young people and their parents in order to identify their goals and help them achieve. Its great that your daughter is thinking about the Paralympics, good luck to her :)

What sport does she want to compete in madwoman?

Don't even get free wheelchairs here, post sixteen. We had to buy dds, which in many ways was great because it's a good one, comfortable, fits her far better than the standard NHS one and is far lighter. Cost a fortune though, so that's where some of the DLA goes, just for folks who think it's all for cinemas and restaurants!

No free wheelchairs here either. Just had to replace mine and you are right they do cost a fortune. Especially when you have to replace crutches and grab rails as well.

My Dad died in hospital and we had to pay to have the electric wheelchair transported back to the company it came from because it was on HP being paid for by DLA. They sent a threatening letter dated 3 days after his death because we hadn't already sent it back to them. It's the life of Riley being disabled/a carer isn't it?

I dont think anyone wants people to feel sorry for them madwoman, the way i read it, they (and i) just want people with no experience to understand the reality and relentlessness of it.

I do get a free wheelchair, just have to wait god knows how long for it (am waiting now). They have 9months after appliction before they beat my PIP for pisstaking though...

A few more people to get stuck in and back us up would be great too.

(I am in wales though - wonder if its at all linked to free prescriptions?)

NHS wheelchairs are a waste of time ime. They are too heavy and cumbersome. I found it so hard to push him anywhere.