PLS HELP MY SON TO SAVE HIS MOBILITY ALLOWANCE!
I am a very worried mother of Adam who is profoundly disabled and has complex needs.
Adam was born 13 weeks too soon and in 5 minutes he was hit with a massive brain haemorrage which left him with Cerebral Palsy, Hydrocephalus, blindness. Although he is unable to speak, eat or drink he is a happy young man, nearly 16 years old now, with a busy life, a passion for music and Roald Dahl's stories and with a wicked sense of humour.
From the moment he was born, me and my husband have been fighting constantly for his life and for the provisions he needs to live a quality life. The constant battle with Health, Social Care, Education, Housing etc. had taken its tall on our health. I have CFS and struggled with bouts of depression and anxiety in the past. Only able to work part time, well below my qualification, skills and abilities. My husband had to give up his profesional career totally in order for me to work. He also developed chronic health problem from the intense caring and stress.
The coalition Government's shocking plan to remove the Disability Living Allowance Mobility Component for those in residential care will have a disastrous effect on some 80,000 lives. Vulnerable people and their families are terrified of being robbed of their freedom.
As Brian Rix, President of Mencap, House of Lords rightly commented in the Guardian, David Cameron (whose late son and father was disabled!) appeared totally ignorant of the true situation when a question was raised in the Commons. The PM and his government says that 'there should be a similar approach for people who are in hospital and for those who are in residential care.'
This approach is totally against human rights and would lead us back to the 'Medical' model of disability.
Just think! When you are in hospital, you are unable to go to work, college, pub, theatre, cinema, park or visiting relatives and friend... When you are OUT of hospital you can still live a full life even if you are disabled and unable to get about without car or support! It is anything BUT similar situation to a hospital admission.
What the government says is that if you are disabled and you need a high level of support with your daily care which warrants a residential placement, you should left to rot there, you should have NO freedom of movement, you should not take part in our 'Big Society'!. You should be left in the mercy of the money-starved local authorities and their underpaid, demoralised, poorly trained and unsupported staff!
Furthermore, are you aware, that there some DISABLED CHILDREN whose complex needs can be only met in specialist residential schools or respite homes?
These children's families will lose their specially adapted 'motability' cars, so they will be unable to go out as a family, take their children home or to medical appointment etc.
Without the Mobility Allowance is simply impossible to purchase, insure and run a wheelchair accessible car!
In fact, even the Mobility Allowance does NOT cover the real cost of a leased motability vehicle, because families has to raise a substantial amount of 'advance payment' every three to five years(!) for the adaptation of the wheelchair accessible vehicle - which is NOT theirs, they just use it for a limited period of time.
In our case, because of Adam's specialist wheelchair he needs a rather large vehicle to accommodate his chair, his equipment and allow an 'escort' sitting next to him. In order to USE (not own!) such a vehicle, we had to raise £6,000 just for the advance payment of a 'motability' car. In addition his Mobility Allowance is paid directly to the Motability Scheme to cover the hire, insurance costs. In return Adam has a suitable car to use for a maximum of 5 years. Then after 5 years it will all start again... we have to raise another £5-10,000 to lease another vehicle, as the motability car has to go back to the dealer. The car is for the benefit of Adam, which means we are unable to use it for work, which has a negative impact on our employability and ultimately on our financial situation.
Adam attends a residential special school Monday to Friday and he also spends some short breaks there to enable us to look after him and his brother. He would count as a person who is in 'residential care', so he would lose the use of the wheelchair adapted mobility car. This would mean we would be unable to bring him home for the weekends, school holidays etc. Adam has already lost part of his Disability Living Allowance because he goes to a residential school, now he is to lose the use of a car and his freedom of movement too. The effect of this crude decision will be devastating to our family!
When you read the papers, watched the news you might have ignored it, because you are lucky not to have somebody close to you who could be affected. PLEASE THINK AGAIN!
Eva (Adam's very worried mum)