stop the dla takeaway campaign

Indie_Kid

beth58 wrote: »

I thought this thread was about raising awareness of a charity fighting for the rights of disabled ppl and their carers. Not a discussion about who does or doesn't provide care.

The petition is for disabled children - no mention of adults.

beth58_2

sh1305 wrote: »

The petition is for disabled children - no mention of adults.

Ooo sorry are children not ppl?

Indie_Kid

beth58 wrote: »

Ooo sorry are children not ppl?

I never said they weren't. Contact a Family have a petition for disabled children - yet again, no-one cares about disabled adults.

sunnyone

beth58 wrote: »

I thought this thread was about raising awareness of a charity fighting for the rights of disabled ppl and their carers. Not a discussion about who does or doesn't provide care.

Disability Living Allowance - eligibility : Directgov - Disabled ...
You can get Disability Living Allowance for your care needs even if no one is actually giving you the care you need, even if you live alone. ... www.direct.gov.uk/en/disabledpeople/.../dg_10011816 - Cached - Similar

It seems, even if no one actually provides the care be it, Hospital, Parent or Carer, an individual should still qualify for DLA based on care need, not what the care provider does or doesn't do.

Personally I can see both sides of the argument however, disabled child or adult still need input from their carer regardless of how long they've been in hospital.
Parents need to visit children, bills still need to be paid, places at schools/respite need to be maintained, additional carers need to be retained and a home needs to be maintained for when the disabled child/adult returns home possibly with even greater care needs.

Parents and/or disabled adults have the same liabilities but at least children thave two parents to share the load with in most cases, many disabled adults have no one to shoulder things with and can often have kids to look after as well which puts the family juggling at about the same level as a single parent with children when one has a disability, all disabled people should be treated the same no matter what age.

happy_mom

Most people obviously havent had a lengthy stay in hospital with their child. My daughter was an inpatient for about a year battling cancer. At one point we even had to move to another city, leaving our son to be cared for by relatives - because we had no choice and couldnt cope with the stress of being there on one's own. Throughout all this, one parent had to stay with her whilst the other went home to care for our other child. We were told when she was diagnosed that a parent should be there with her day and night. Even the nurses in the ward admit that they could not cope without the parents, for example these are some of the things we had to do EVERY DAY: 1. administer meds which were left at the end of the bed, collect the water to take the meds. 2. Collect supplies of bed pans and sick bowls and take full ones to be weighed and measured. 3. Prepare food for our children as most children on chemo will not eat the food provided and nurses quite openly admit the food is appalling! 4. Entertain the child as they are bedridden. 5. Change beds as fresh linen was dumped in the room each for the parent to change the bed - this may have needed to be done a few times a day if they were sick!

On top of this there are increased travel costs, parking, childcare and food costs. In addition to the fact that often 1 parent is a carer because they cant work to provide care - and they still have to eat, pay bills and try and keep a roof over their head for when they are lucky enough to be home and the NHS dont provide this for parents, but they also have their carer's allowance removed. So what do all those who think it is right propose the carers do when benefits are withdrawn?

And for those who say there are charities to provide money to families in hospital - please can you provide details.... am interested to find out more and where they get their pot of gold from (Broken hearted) - it doesnt appear by magic!

happy_mom

You obviously havent had a child in hospital then????

Indie_Kid

happy_mom wrote: »

Most people obviously havent had a lengthy stay in hospital with their child. My daughter was an inpatient for about a year battling cancer. At one point we even had to move to another city, leaving our son to be cared for by relatives - because we had no choice and couldnt cope with the stress of being there on one's own. Throughout all this, one parent had to stay with her whilst the other went home to care for our other child. We were told when she was diagnosed that a parent should be there with her day and night. Even the nurses in the ward admit that they could not cope without the parents, for example these are some of the things we had to do EVERY DAY: 1. administer meds which were left at the end of the bed, collect the water to take the meds. 2. Collect supplies of bed pans and sick bowls and take full ones to be weighed and measured. 3. Prepare food for our children as most children on chemo will not eat the food provided and nurses quite openly admit the food is appalling! 4. Entertain the child as they are bedridden. 5. Change beds as fresh linen was dumped in the room each for the parent to change the bed - this may have needed to be done a few times a day if they were sick!

On top of this there are increased travel costs, parking, childcare and food costs. In addition to the fact that often 1 parent is a carer because they cant work to provide care - and they still have to eat, pay bills and try and keep a roof over their head for when they are lucky enough to be home and the NHS dont provide this for parents, but they also have their carer's allowance removed. So what do all those who think it is right propose the carers do when benefits are withdrawn?

And for those who say there are charities to provide money to families in hospital - please can you provide details.... am interested to find out more and where they get their pot of gold from (Broken hearted) - it doesnt appear by magic!

How is that any different if the disabled person is an adult? Many disabled adults are still in need of the help you mentioned. When I was in hospital, I needed to be checked every few hours, had to have someone change me (I had an infected coccyx and had blood coming out of it and was unable to change it myself) and had someone to help me get dressed - the latter I need whether I'm in hospital or not.

Mikki

This thread has actually saddened me. There seem to be a few very bitter adults on here who rather than do something constructive prefer to run other people down.

I have a son with a chronic illness - he receives high rate care DLA and I get Carer's Allowance for him. I must admit that prior to him becoming disabled I too would have wondered why on earth DLA was still paid when patients were in hospital. Sadly I now know why.

My son was hospitalised earlier this year for a fortnight. I had to stay with him all that time - there was no way I could leave him in hospital on his own, and I think it would be cruel if anyone suggested for a parent to do this. While unlikely that my own son would ever be hospitalised for over 12 weeks, I do wonder what I would do if that was the case and DLA and CA stopped. I have had to give up work to look after my son, so rely on CA to live on. Would I be expected to magically find a job? It would be wrong to claim JSA as well as I would not be available for work. How on earth would I pay my bills etc if my child was in hospital? It all seems very Victorian!

It's all very well to say that I wouldn't be needed at the hospital as they would be providing the care. In my experience that was not the case. Aside from the horrific idea of leaving a young child alone in a hospital with no family member there to comfort them, I also continued to give the same care to my son as he got at home. He has type 1 diabetes and I still had to carry out all the blood glucose checks I do at home, still had to carb count all the meals he ate and still had to calculate and administer all his insulin doses, and treat any hypos he had. In fact, the only extra care he was given by hospital staff was insertion and administration of a drip. The general medical staff on the ward knew nothing about how to treat my son's condition, and in fact on 2 occassions recommended treatment that was downright dangerous and could have killed my son had I not been there to put them straight. There is no way I would be able to leave my son alone in hospital and delegate care to the staff.

I have no idea why there is a disparity between children and adults but instead of complaining about how many childrens' charities there are, why not campaign yourselves?

Broken_hearted

Because kids are easy to get money for, people struggle to raise money for disabled adults.

Indie_Kid

Broken_hearted wrote: »

Because kids are easy to get money for, people struggle to raise money for disabled adults.

Exactly. There is no single charity that I can think of that gives grants to a disabled adult who doesn't have a specific medical condition. whereas with children, there's the family fund. Once you reach 18, no-one cares and you're on your own.