Respite24 I am so sorry that you are being met by several individuals who have zero empathy for your situation. I understand that during the time your son is at his day centre, you are having to achieve basic tasks which are quite simply impossible whilst with your ds. Going grocery shopping, taking yourself to a carer support group or doctors appointment. Oh and not to forget SLEEP! Not to mention the fact that your ds likely is using his motability car during the days he is at the day centre! For example in the mornings or after he is finished at the centre for any medical appointments or for social events.
The mobility component of PIP is not a taxable benefit, therefore it is not allowed to be included in any calculations that SS make regarding the contribution that a service user needs to make towards their care. Those rules are not set by you OP, they are set by the government and should be followed by the local authority! What certain individuals fail to understand is that even without the mobility car, after £17 a week contribution for transport costs to his day centre, you would be left with very little money to pay for the taxi costs to hospital appointments and therapy appointments. In fact if you don’t live five minutes away from the hospital, you could be in the situation where you would need to pay £30-£40 each way to reach the hospital and return home (exactly the cost of transport from my home to our local hospital). Your ds is autistic and the provided hospital transport may not be suitable for him! Not to mention that hospital transport is not provided for every appointment! Taxis are expensive and not every local authority provides taxi cards to allow cheaper taxi fares (my local authority and surrounding local authorities do not!)!
What is also not being mentioned, is that alongside paying for your sons care and transport, you are having to feed and clothe your son, when you have very little money left in the pot from his benefits. You are on a pitiful not ‘princely’ (yes I know you were being sarcastic, however there seems to have been a literal interpretation further back) sum, it is an absolute disgrace and embarrassment the pitiful amount that carers are ‘paid’. Anyone that grudges you that benefit is bloody welcome to go and take over the 24/7 care that your son needs! And it is bloody 24/7, it doesn’t end at 8pm and start up at 8am the next day! You have a doubly incontinent adult who will have toileting needs overnight, not to mention anxiety and meltdowns to deal with. If he even manages to sleep! Having an Aunt Fanny, Uncle John, Cousin Fred who had disabilities and benefits gives you SFA idea of how gruelling and exhausting that care is! And no, going to a care centre doesn’t mean that you are not caring 24/7! It is you who is there when the day centre sends him home early because of a meltdown, or because he is unwell, it’s you who stays at home with him when he is too distressed to even leave the house! Even if you haven’t slept a bloody wink overnight because his seizures were bad or he needed changing twice, or he was anxious about the next day.
Being a parent is a 24/7 job, nobody would deny that, being a parent carer is even more so! You NEED that respite and anyone that grudges you it is an absolutely clueless and cruel individual and should stick to commenting on the Daily Fails articles!
Definitely get an advocate for both your son and yourself if possible! SS will do anything they can to cut costs and I would not be surprised AT ALL, if they have done this deliberately. As a service user with severe disabilities myself I have witnessed how quickly they can turn when you don’t blindly comply with them! There are many wonderful social workers but there are also inhuman bastards who have zero empathy and see service users as a number, not a person (I had the pleasure of meeting one of them!)
You have a right to respite and you should NOT have to transport your son to and from this day centre. Not when the entire reason he is being placed there, is so he learns independence from you! This is a transitional role that is bloody important! His travelling to and from his day centre NEEDS to be separate from you, or there is zero point of him going!
Unfortunately, this thread has attracted the bitter daily fail readers who grudge disabled people and their carers the use of motability cars and of benefits for that matter! They are of the opinion that disabled people are rolling in money, this is despite care costs, travel costs, oh and the same bills that everyone else has! Housing costs, food costs, water costs, electricity/ gas costs (which are often significantly higher due to a disabled person in residence), fuel costs, insurance costs..........Money is TIGHT!
Anyway, I just want you to know that I understand, that I empathise and that I am sorry that you are receiving the bullshit on this thread when you need empathy and support!