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!

happymummy you are very naive.

I do not live in a nice area, it's officially classed at 'deprived'. You cannot get a house to rent for £85 per week unless you have a council house.

Also you cannot get carers allowance if your child is on lower rate care. Housing benefit or housing allowance does not cover the rent if you are in private rented accomodation.

Having a disabled child is not a life choice. I never planned for my son to be autistic. Because of his disability i cannot have another child because he would not cope. I have sacrificed a lot for my child i don't need people who have no clue to tell me i don't deserve the money i get or that i'm not trying hard enough to work. I am. I spent 3 years at uni for my career i have not thrown it away willynilly.

Thing is HappyMummy when I had to give up work, we lost my salary completely. As we lived miles away from any family, I worked part-time school hours, so we wouldn't need childcare. That meant I hadn't paid enough NI to qualify for Incapacity Benefit.

As a disabled adult to get the "disability element of tax credits" you have to work at least 16 hours a week. (When I was working you also had to get higher rate care DLA so I didn't qualify).

So, whilst DH still works we lost a salary in one full sweep. If I weren't disabled I would be a full time worker and we would be better off. It's not rocket science!

Glass half full, really a cure for cancer, too.

Happymummyofone

You know that thing about walking a mile in someone elses shoes? That. Except in my shoes you cant fucking walk.

You've even only got one child ffs.

Signed
Disabledmummyoftwo

Some people with disabilities have fewer choices though. I cannot live in a 3rd floor flat. I cannot work in a job that would involve me using public transport. I could not go away to university because my carer (my mum) lives in London and I would not receive the same level of professional care if I was elsewhere.

Despite this, I am a glass half full person. I take each obstacle just as it is but if you haven't experience the life changing wrecking ball that is disability, how do you know the little things that most people don't even think about?!

Poverty of opportunity is the read killer as far as I can see.
My DS2 has Autism and learning difficulties. Since a little child DLA has supported us in financially meeting his extra needs, and I have been extremely lucky to have a job in bis special school which has meant I have been able to work since he was 6.

BUT.. he's 17 next week.. no longer a little child. The DLA is changing to PIP and I'm pretty sure it will reduce for him. He wants a job.. he is a gentle young man with scattered understanding who could maybe wash up in a cafe, or wipe tables ..but he will need supervision and support and who is going to want him:( WE have managed financially but his future as an independent person is very unlikely as it is almsot certainly going to be one of unemployment..

He's not quite disabled enough for the local SS to be forced to help care for him, but not able enough to care for himself. The benefits he will get are likely to make him a very poor, and worthless (in society's eyes) adult :(

Fairy, re disabled element of wtc. You can get it if you meet higher rate pip (which i do), but only if your partner earns under x amount. Which again, mine doesnt. Cause we're fucking rolling in it.

Expat

I listed some of my little things upthread candy, like having to replace most of my clothes as i cant wear what i already own, pull ups for the boys rather than nappies. Adds up quite a bit. But clearly happymummy hasnt read that and is too keen to troll the thread about all the lazy, pessimistic disabled people

All my disabled friends are struggling financially. It is very tough for them.

Me, I lose 5k a year next year because dla is out and I don't think I'll qualify for Pip. Without dla I would never have been able to move out of my parents. They live very rurally, so the ten years I lived there as an adult I knew two people and left the house maybe 10 times a year.

Here, I leave the house twice a year, my quality of life has improved dramatically. When I lose my dla, I still don't quite know how I'm going to pay for my care (2k a year minimum), or get a new wheelchair if mine breaks (2k minimum for one I can actually use), or run my car (can't use public transport. Am I actually going to be able to get out beyond my local shops? I don't realistically know)

Life is very tough financially when you can't work. Disability is expensive.

Expat that's heartbreaking ,my family are on benefits two
Of my three Dcs are autistic and dp has severe agoraphobia and depression , I can't imagine any childminder coping with my dd2

Happymummy isn't naive.
She is willfully ignorant.

To suggest that it is simple for a parent of a child with disabilities to just go to work shows that she simply refuses to acknowledge reality.

Let us look at childcare first.
There is very little available childcare for disabled children and when it exists it is very hard to access.
There is NO wrap around care in my densely populated borough.
So that would mean you would have to get a job 10-2.
Any holiday care is limited to a half term and a couple of weeks in the summer. You can't just pay for this. You have to be awarded 'short breaks hours' to use. To get these you have to apply and be approved and then hope you get enough. You won't. You might get enough to pay for two weeks a year.

So that means you have to get a term time job only (remember it has to be 10-2).

Then we have the issue of appointments. Your employer will have to be very understanding and generous with leave.

My son had an appointment every Monday afternoon for 2 years. This was on top of all the other ones.
This is nothing to what some of the families I work with have to juggle.

Some children have whole day appointments, 2-3 appointments in one day, 5 appointment a week. Lets not forget the frequent hospital stays for some children plus the children who are vulnerable to infections, have seizures etc

I have worked with hundreds of families over the years and I can count on the fingers of one hand the amount who have both parents in work or the single parents who manage to work.

I work part time, my OH works part time. We are ok but vulnerable. It is likely that OH's condition will get worse because it is degenerative.
DS will never be cured.

I cannot get ill. Ever.

Twice a year? Oops, twice a week!

Happymummy isn't ignorant or naive.

How long has she/he/it been on here now spouting the exact same thing year after year after year?

Every single thread like this that poster appears. The same posters and newer posters have all tried to explain what life on benefits and disability is like...for years and not a single bit of it has filtered though. Still the same crap is spouted.

Considering the number of posters that have tried to enlighten/educate smugmummy over the number of years over the number of threads leads me to think it's a troll.

There's no other explanation for it. Any other poster will read these posts and at least try to remember them or take something on board but this one particular poster is the exception.

This thread is clearly about parents with children with disabilities and people with disabilities which stop them working or working as they would prefer.

However, it ignores people with disabilities who do hold down well paid jobs. Not every disabled person is the same, and I don't think hammering home a message that ignores the existence of disabled people who have well paid jobs (though they are rarer than the general population) or achieve all sorts of things is particularly helpful.

Chelsy Statistics support that people with certain disabilities generally are lower earners. You said yourself that some people are the exception to the rule. The first line in the thread said "obviously this is not the case for everyone".

I think so much of the financial aspects of disability are hidden. It's really good when people share their stories, it's eye opening. I have so much respect for parents whose lives are totally changed by a disabled child.

My mother is disabled - paraplegic and a lung condition caused by a bodged operation and a hospital infection. She works part time, but her ability is work is limited by her carers. The care agency deem 10.30am a suitable morning visit, meaning that she can't work before lunchtime. She actually earns less working (as a teaching assistant) than she could receive in benefits but she wants to work because it's positive for her self esteem.

There are totally unquantifiable effects of my mothers disability. For example, my sister and I always have to keep some flexibility to accommodate our mother's needs. I suspect I will always work part time because it gives me enough time to deal with hospital appointments and the regular health crisies. My sister's career options are limited as she needs to stay close.

My mother's options are so limited as well - she really needs to move from the family home now that she lives on her own, but she can't afford to move as the costs of adapting a smaller home are beyond her reach.

As an extended family we are definitely financially affected by my mother's disability, and it's only going to get worse as she gets older. But more than finances, I wish there was more understanding and advice. It seems like once someone in your family is discharged from hospital with a disability, you are totally on your own.

Now google a couple, Happy. Me and him, coz it will be just us soon. You are talking shit as usual.
Has it never occured to you (of course it hasn't, so let's point it out) it's really fucking rude of you to come on these threads and talk shit about something you have no idea about. The fact is that there are many, many people with disabilities who are unable to work (no matter what they're attituded hellokitty) there are many who are single. People cannot manage special diets on the money they get, special clothing, special bedding, petrol, extra heating, all the things dla is meant to cover, trust me, it doesn't. So, when you have a clue, do come back and talk to those of us who have a great deal of experience, we'll do all we can to help you, until then keep off these threads, you really aren't welcome, you just come on to upset people and goad them.

How many people with disabilities do you think have well paid jobs then? I'd bet it's not very many in comparison to those who either work in crappy low paid part time jobs or who are unable to work at all due to their circumstances.

On your logic, Happymummy, if I were to have a 3rd child, with the high risk of them also having ASD, I'd be rolling in it.

So not worth the money.

Who is saying they are Chelsy?

Chelsy who should it be helpful to?

Facts are that you are waaaaaaaay more likely to be unemployed if you have a disability.

Stephen Hawking may be doing very well for himself but he is in the minority.
Denying reality is not helpful.

Being disabled doesn't make you stronger, more determined to succeed, nobler, braver or imbue you with magical powers.

It makes you an ordinary person with extra obstacles.

People with a handful of qualifications, ordinary skills etc can become disabled. If the job market is tricky when you are strong, fit, healthy and well what the feck is it like when employers think you are going to take time off sick and your legs don't work?

I have to say, it really fucks me off when people give opinions on life with a disability when they have no lived experience of it, especially when it's contrary to the general school of thought. By lived experience, I mean; experienced in themselves, have been/are a carer or worked very closely with a range of people with disabilities.

YouTheCat How many people with disabilities do you think have well paid jobs then? I'd bet it's not very many in comparison to those who either work in crappy low paid part time jobs or who are unable to work at all due to their circumstances

And how much of that is due to negative stereotyping? One of my former colleagues was registered blind, and did an excellent and rather well paid job. Its hardly unknown. I really cannot stand the attitude that ambition and prospects should be stifled because some people think its too difficult.

It is SOOOOO much harder to work when you have a disability or are the parent of a child with a disability. The equality act has helped, but only if you already have a job. Trying to get a job when other people have a distinct advantage over you, is a real challenge. How do you explain in an interview, that you will need more time off sick than their policy allows?
A disability restricts the number of jobs that you can apply for, yet you are given no concessions fo this. If you are deemed 'fit to work', you are expected to do the same as everyone else.
As a parent of a child with a disability, there are the appointments, the time off sick, the times you are called into school and the days that your child cannot attend either through exclusion or the lack of ability to include.

Disability benefits help, but they are not the lap of luxury that some people seem to think they are. I think for most families with a disability, they are worse off than average.