Disabled adults 'face inequality'

Replies

By Tricia

Re: Disabled adults 'face inequality'
Tue 16 Sep 2008 16:25

Thanks Sam for providing the web page to check out the information about adults with learning disabilites living at home.

This is one thing which is close to my heart as my son lives at home and due to go into adult social services (A year today it's his 17th birthday today) One of the issues which has caused me worry over the years is as he gets older will he just be forgotten about due to wanting to live at home and not wanting to go into supported living. (We are fortunate to be in the position to have a house which is suitable for his needs) I can see me being the one who needs to move out more than him but for some reason I think he would just follow where ever I went to so am staying put too (even if my kitchen ceiling has dropped to the ground yesterday!)

He is known to services and I have been reassured that he will always be known to them. I know as long as I am alive he will be!

Over the years I have had people asking me why don't I work in paid employment through out the day time. Many of those days while my son has been at school I have caught up on my sleep as I have sleep apnoea and do need to have my sleep so I am able to care for him to the best of my ability. Also I attend what ever I can in the way of information meetings and have got involved in many committees relating to my son's needs and this takes up a lot of my time.

Caring role does not just stop at the phsical needs and the emotional needs of the caree but also includes the information finding required to be able to give the caree the best that is out there.

By loopy

Re: Disabled adults 'face inequality'
Tue 16 Sep 2008 22:32

how dare others ask you why you dont work in paid employment through out the day time! cheeky buggers, do they not think that we do enough? most of my time is spent chasing up doctors appointments, cleaming, washing, cooking etc etc, all to contribute to making our home a safe and happy one. Believe me, i would love to hold down a job, but my caring role has to come first as i am sure yours does too tricia. People really annoy me sometimes because they seem to think that we do bugger all all day. We get the motobility car for our daughter and i had one friend make some sarcastic remark to me once that really got my back up . She said "does she go in the car with you very often?" meaning, why should you have the car. She really wound me up and i dont see much of her now. She was always of the opinion that "you have to go out and work for what you want", which i do agree with, but when you become a carer , holding down a full time job seems to fly out of the window!!. sorry for the rant, but some people just really wind me up. Do they think that we choose to become carers?? Do they not think that we would like it to be some other way? Our kids cannot help the way that they were born and in my opinion its our jobs as parents and carers to make sure that they have happy healthy lives. Everything else takes a back seat in my view. rant over !!! lol ........

By Tricia

Re: Disabled adults 'face inequality'
Wed 17 Sep 2008 08:40

I know loopy I soon put them in their places when I tell them of the amount of voluntary work I do inbetween my caring role too. I don't want reconision for my voluntary work as i look at it as something to do when I can and in the hours which I can; you can't do that with paid employment but gives me job satisfaction in that I have the skills should I ever come out of my caring role.

I remember years ago someone had a go at me about oh you get DLA so your alright I soon put them in their places saying I would give up my son's DLA if my child was able to live a life like your child and go out to play have friends and be able to do things for himself the way your child can. That soon shut them up!

One day it could be them in our shoes as no one really knows what is around the corner!

By morello

Re: Disabled adults 'face inequality'
Wed 17 Sep 2008 09:23

Thanks for the link, are they not telling us who care for adults what we already know. The services are disgusting, the help negligable and as long as we get on with the caring bothe of us get ignored. We are the silent ones to them, the carers dont get help, maybe because they are too old, sounds familiar,and if they sent me out to work they would find it a hard jobe to replace me.It would cost them a damn sight more than me working and not having to pay me IS +half a carers allowance. Isnt anyone else p......d off with this, when the Direct Payment people are getting £10+ an hour. I cant go on it just makes me ill to think how we are all used.
Mo

By Tricia

Re: Disabled adults 'face inequality'
Wed 17 Sep 2008 09:52

My health has suffered partly due to my caring role. Many of us carers suffer in long term health and it would be interesting to find out how many former carers are now unable to go out to work due to ill health. One of the many factors in a carer's health being affected is the constant worry about are finanaces.

As for going out to work I know there is that option there but weighing up that option I have to consider the emotional effects that would have on the person I care for. Along with how would I cope with having to come home from a day's work and continue with the caring role?

That is the same for many carers we don't really have that option in being able to go out to work and support ourselves which would allow us to have a liviable income to manage in today's life.

When ever I attend a conslutation relating to my caring role I often ask what is the time scale to put into action out outcomes from the day's events? I am always given the same answer we are unable to answer that as we don't know what the outcome is yet. Ah how many of these events do we have to attend for them to start taking action I wonder!

By Bernie56

Re: Disabled adults 'face inequality'
Wed 17 Sep 2008 14:21

I agree about caring having long term health effects. I cared for my late hubby almost single handed and the result is my nerves are now shot to pieces. It is bloody hard work caring for somebody with any illness but when it is terminal think you get the added pressure. Hard to talk about the future when your loved one hasn't got one.
Added to caring for my hubby my mum had a nasty accident in May this year and I have been going to her house more or less daily since she came out of hospital. People who have never been in a caring situation have no idea how it takes it out of you(besides saving this country and them a small fortune)

By morello

Re: Disabled adults 'face inequality'
Thu 18 Sep 2008 10:01

This is only the tip of the iceberg, I think all of us suffer from some stress related disorder, and to be honest it isnt surprising is it. The worry of money is another added stress. I was looking at my Direct Payment sheet and a live in carer (who obviously would have none of the bills to pay) gets £899.39 a week. Plus I bet they have to get some sleep for that to. So maybe that is what we should all be demanding as it is obviously what the government deems fit for the job. I dont know about the rest of you but that alone makes me ill.
Mo

By mand65

Re: Disabled adults 'face inequality'
Thu 18 Sep 2008 10:11

Ive often thought that adults who live with families that are not on any registers/lists one less person for local authority to spend money on, bet there's thousands in this country missing out, i work part time my daughter has 3 days care, now im taking holidays and using respite hours to cover.Ive always worked but now finding difficult juggling and rushing around as my daughter gets older, more difficult keeping her busy, she will not sit at home and needs accompanying all times. Our children/ caree's do not need to sit at home all day stagnating, as for jobs,social life, respite and meeting care needs all going in a downward spiral im fed up hearing about cut backs and budget. Gov and L.A who decide who to "spend" money on or not should be in our shoes for a few days, or better still every carer take their loved ones down to local social services dept leave them and i'l bet they'd be bankrupt within a week . Carers as we know saves the country millions. What ever you decide work or not your stuck over a barrel financially and care wise, sometimes little help and no back up when you really need it.

By loopy

Re: Disabled adults 'face inequality'
Fri 19 Sep 2008 08:49

did i read that right mo, £899.39 a week???? thats an obscene amount of money !!! god if only i had that kind of cash !!! .

By Tricia

Re: Disabled adults 'face inequality'
Fri 19 Sep 2008 11:17

That figure would not surprise me as I have recently been involved in considering taking the option of an Individual Budget for my son (we declined for personal reasons)

His package which he now receives from the Local Authority costs in the region of approximately £15,000 if he takes up all of his 42 nights respite per year and he also has six days Easter Play scheme and 17 Days Summer Play scheme included. That means it costs approximately per week £288 if paid on a weekly basis. I had been informed that some care packages that involve daily care cost local authority in the region of £54,000. That won't take rocket science to work out of over £1000 per week.......................

And we get our income supported reduced because we earn too much through our carers allowance! (Those who get Carers Allowance and Income support)

Those figures can't be justified in my calculations!