The Call for Evidence closed on 10th October 2011. A full copy of submisisons and transcripts from the oral evidence sessions will be available shortly. For more information about the Call for Evidence please contact info@lowreview.org.uk
The Call for Evidence closed on 10th October 2011. A full copy of submisisons and transcripts from the oral evidence sessions will be available shortly. For more information about the Call for Evidence please contact info@lowreview.org.uk
I am a severely didsabled person and live in my own home. I had occasion to stay in a care home (Ernest Kleinwort in Burgess Hill, Sussex) for two weeks while building work was being done on my home. I have a Motability car. Ernest Kleinwork is in a very suburban setting with very little locally. Individual transport is essential for each resident. If I had not had my car or mobility allowance life would be unthinkable in this particular care home. No doubt the Govt are looking to care homes to provide buses but this is NOT a solution. We don’t want to go back to the old days of being bussed around together on patronising outings. I have a friend who lives in a care home in N London who uses the MA to visit his mother in Luton. Each person unfortunate enough to be institutionalised should have the right to be able to travel WHEN and WHERE to travel without having to rely on a limited care home bus.
I know from experience that DLA for those with genuine care needs is important not just for disabled people but their families too. Any government reforms on benefits will have to be thought through very carefully so that the system is fair
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I agree with Mary,I too am disabled living in my own home.I recieve the higher rate mobility component of DLA and I too have a motability car. Although I have not had occasion to stay in a care home( yet) I know than when or if this happens I would fight fiercely to keep my motability car. My independence is extremley important to me as I am sure it must be to people living in care.
My mother went into a care home as I have fibromyalgia and arthritis and unable to care for her myself. She had a mobility car but I was her driver and I phone mobility to return the car but they told me she had it till she died even when she went into a care home. Someone had told me I could get into trouble keeping the car which was not true. I also changed it from a Safira after 1 yr as she was not able to walk and I asked for a Renault Kangoo which I hated but it was able to push her wheelchair with her in it. They were going to charge me £250 but I asked to speak to manager and told them my mum’s condition had deteriated and they did not charge me anything.
I am of the opinion tha every individual has the right to freedom of movement if you take away that right we will be going back to the dark ages, I have worked for 30 years in the public transport industry up until 2008, now through ill health I can no longer work I am also a amputee and have been since 1984, this did not stop me from doing the job I loved but developing angina did, I had a tripple heart bypass in 2000 but continued to work untill 2008, If I had to go into a care home I would like to think I would still have the freedom of choice to go out as and when I please.
not had to stay in a care situation yet – as can still live in own home – and get NO help from local authority as regards mobility – fortunatly have my own scooter ( no need for car – not allowed to drive anymore owing to disability ) – but if i DID have to rely on them – i would be well and truly stuck – and house bound !! – DLA – does not cover many taxi rides anywhere – example down here ?? 3 miles + £8 one way – so to go to OOT supermarkets etc – is a luxury – and limits my shopping ability to just 2 supermarkets – each expensive !!
as it is i don’t go out at night because one is vunerable to abuse on a scooter /chair and access to places is a problem anyway – so my social life is ZERO !!
SO I FEEL SORRY FOR THOSE IN CARE HOMES – as the owners won’t want to spend any of their profits providing mobility services ”
i just hope all these politicos end up poor and disabled one day – then they will know what pain they are inflicting on us all
I am the secretary of the Rhyl Wheelchair Basketball team and depriving people of the Mobility Allowance will affect younger people in care who wish to attend events such as ours. Socialising and remaining a member of society is vital to wellbeing and mental health. Cut off mobility and people will be imprisoned within four walls, cut off from the rest of the world – surely this is discrimination?
I have seen the improvement in the attitudes, happiness and fitness of our members, which includes both ablebodied and less able people, mixing together to enjoy sport. Don’t take this away.Please.
How are care home residents to know about or respond to the Low review?
Despite being co-ordinated by Leonard Cheshire Disability, this call for evidence hasn’t been advertised in LCD homes. In any case, the only option for responding to the review is by email or post – which is of little use to the majority of care home residents who are unable to engage in such a manner.
“Nothing about us without us”
We are working with organisations such as VODG and ECCA, and charities to promote the call for evidence to care home residents.
Leonard Cheshire Disability will be promoting this in the middle of August in LCD homes. People can respond via the online survey, via email or post, or they can phone in with their answers. LCD staff will also be available should anyone need help filling in the call for evidence.
As the parent of a severely mentally handicapped adult in residential care I am extremely worried at the possibility of my daughter’s mobility allowance being removed. She is unable to speak or to understand and has other multiple difficulties. However, she enjoys being taken out and participating in various activities. This gives her stimulation and also allows her the opportunity to remain part of the community at large. Should she be deprived of this allowance these outings will not continue. The home does not have the resources to fund transport for her and it will mean that she is effectively a prisoner in her residential home, not seen nor heard and easily forgotten. This would be a retrograde step, returning to the era when people were effectively locked away. Since my daughter cannot speak for herself I am speaking for her to ask that she be treated in a dignified and respectful way and accorded the same rights as others.
Since when did any political party care for the disabled & their carers ? Only when they want our vote. Do I as a carer sound bitter ? No I’m not bitter just sick of their lies.
I am writing on behalf of my 13 year old son who has severe learning difficulties. He does not speak and cannot reply for himself. He is in full time residential care because of his complex needs but we visit him as often as we can as he needs contact with his family. We would not be able to take him out without a Motability car.
I echo what Joan Bohl says. My daughter loves going out and would be severely hampered if all the money she had for ALL her needs (clothing, transport, leisure, hairdressing, toiletries, presents for friends and relatives, holidays) was the Personal Expenses Allowance of £22 a week!
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I am the mother of a 39 year old man with cerebral palsy who lives 42 miles away from me in a residential care home. He has a wheelchair accessable vehicle which he funds with the mobility component of his DLA. There is no possibility of his ever living close to me as there are, and never will be, any suitable homes in my area. My sons car, which stays at the care home, is his lifeline to his family, as he would not be able to visit us without it. He cannot drive himself, and as me and his father are divorced, leaving the car at his home means that he can visit his Dad too. His sisters also visit and take him grass track racing on a regular basis, which he really enjoys. The funding for Darren’s placement only covers transport to the local day centre twice a week and with the best will in the world the home cannot provide the extra manpower to take him anywhere else on a regular basis. Take away the mobility component of my sons DLA and you take away his ability to maintain contact with family and friends in the area in which he grew up. I see this current action as a retrograde step and deplore this governments action in even considering it.
Winterbourne View sparks extra scrutiny of care settings
http://www.communitycare.co.uk/Articles/2011/08/23/117341/winterbourne-view-sparks-extra-scrutiny-of-care-settings.htm
Our 12 year old son has autism and severe learning disabilities and has lived in specialist residential care since he was 10. We visit him every week-end, often bringing him home to visit. It is a 120 mile round trip. When we visit him at the home we always take him out for a drive, which he loves. The expense of running a car and the necessary fuel is met in part by the mobility allowance which we have continued to receive. His dad and I worked part-time/self employed during the years he lived at home, in order to care for him. Together with the current financial climate this has hindered our career development and ability to find stable, long term work. Without the financial help from DLA mobility allowance we would struggle to see our son as often. We need to see him regularly (we miss him a lot) and make sure that he is safe and well-cared for.
Ann hi,
Having a child and supporting him/her at home is the most wonderful choice, you could have sought additonal support from your council to provide home support instead of residental care, child credit/maintenatance is provided by HM Government, to hear that it has hindered your career development means that employee’s have not been accomodating or supportive.
A visit every weekend, it not as much as the highs and lows that is missed every day and instead he may or mayn’t receive these affections by the care setting he is in. If your council feels that locating your son 120 miles away and couldn’t find a more local suitable place of support, this is another issue that must be reviewed by this commission.
my aspie boy attends college, we live in a rural area, he would not cope with public transport, not that there is any anyway, he get’s transport to his college, without this we would be completely isolated & cut off from an educative or developmental programme…so we value what is provided atm.. t y..
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Our daughter Hannah lives in a residential care home run by Leonard Cheshire Disability. She is 23 years old, was born with peripheral neuropathy that lead to muscle weakness; she also has a minor
congenital heart defect. She started to walk late but a growth spurt at puberty, together with the
muscle weakness led to deformities of the feet and scoliosis. The latter condition required two
operations to insert titanium rods into her back to stem the curvature of the spine. Since that time she
has been wheelchair bound and has developed epilepsy. She also has moderate learning difficulties
and is an elective mute.
Despite her problems, she reads, uses a computer well, enjoys craft activities, going shopping and to
the cinema and theatre and attends college twice a week. The transport costs for these activities come
out of her DLA mobility component. She also uses it to pay for wheelchair insurance including third party cover (about £60 per year) and to purchase and maintain a manual wheelchair and might in the future need to purchase a powered wheelchair (at present supplied by the NHS, but this can vary depending on the Primary Care Trust). In addition, she pays a small contribution towards the running costs of a wheelchair accessible vehicle. Although we are pensioners, we have paid outright for this vehicle and its Road Tax so that we can bring her home at weekends and take her on family outings and holidays. A time will come when either we cannot afford such a vehicle or be able to drive it safely, so continuation of the Motability Scheme is vital for Hannah’s independence. Indeed several of her fellow residents have vehicles under this scheme which they will have to return should the mobility component disappear.
If Hannah and her fellow residents lose the mobility component then she will have to find these mobility
costs from her £22 per week Personal Expense Allowance. This already stretches to pay for toiletries,
clothes, phone and Internet, share of TV license, social activities, college fees and holidays.
Our daughter moved into a nursing home at the age of 17. She is totally dependent on others for her mobility needs and for us to enjoy any family social activities we need a wheelchair adapted van. As Meg is living in a nursing home ( 2 hrs away from the family home ) and deemed to be ‘in hospital’ her DLA and mobility were stopped with immediate effect. Luckily, a distant relative died intestate, leaving enough money for us to buy a second hand van but we will be unable to replace this. We too had to give up work to give Meg 24 hr care before her move and as such have no financial security and are struggling to reintegrate onto any career path. To have to acknowledge that your daughter’s health needs are such that she warrants a bed for life in a nursing home is hard enough – to have your enjoyment of her few good days hampered due to govt funding issues beggers belief in todays ‘civilised world ‘.
looks a good report but bet your bottom dollar the government will not talk any notice
I’m 45 and have been afflicted with Dystonia-Parkinsonism for almost five years. I use braces and a zimmer, but these are quickly becoming inadequate. My dominant left side has no feeling and is affecting my vision, memory loss, narcolepsy, essential tremors, laryngeal dysphonia, spastic rigidity, and fall easily. I am watching many people pulling away from me, both friends and family, and my fiancee left me. My friends are 2 cats. Knives and some forms of cooking and cleaning are dangerous because I drop things all of the time, and it is difficult to clean while weak and on my knees. I have been trying to get out so I can see friends, and hopefully make some new friends. I have relatively good days (for a man that is stared at by others) and I have very bad days. I get by, although I am needing things done in my bungalow.
To be honest my pride brings me to tears. I’m a humble man. Some are mean to me. My family is disgusted by my condition and doesn’t call or visit. Without the DLA component I would stay on my sofa, sinking into a deep depression. Please don’t hurt me. I’ve done nothing wrong, and I am embarrassed by my need from my country, but I pray that one day a cure will be found. Until then I feel that I must have social interaction and help. The DLA helps me immensely. Thank you for your time.