right to refuse a care package

[stuart_1509]

i care for my son full time untill recently have had a carer for him but i sacked the carer for leaving my son alone. my son has a mental age. of 2 and is severly disabled so needs constant care,after this i decieded to care for him myself my question can social services force my son to use a day centre or can i refuse this.i know this is hard on me as i dont get any rest but my son is alot happier and i know he is been cared for

[bowlingbun]

My son is 39, brain damaged at birth. I urge you to reconsider your situation.
What is going to happen when you become too ill to care for him, or die?
In my area there was a couple who devoted their lives to caring for their daughter with Downs Syndrome. Years later, I read in the local paper that a woman with DS was found running up and down her road trying to get help to wake her mummy up. I knew exactly who it was.
Your son needs to get used to being with other people with similar needs to make friends, to get used to others helping him with his care.
You were absolutely right to sack the person concerned (presumably paid on Direct Payments?) but please don't try to do it all yourself. I nearly died, saved only by major surgery, when I was just 54. A year later, my apparently fit and strong husband died suddenly in his sleep at the age of 58. 3 months after that I was hit head on when, quite by chance, I was driving my late husband's Range Rover, not my car. The police told me the RR saved my life, although written off in the process. So DON'T fall into the trap of thinking "I will know when..." because you won't!
From now on focus on one day handing over care to someone else, and take tiny, tiny steps towards that point. Time for a complete review of the current care package perhaps?

[Melly1]

Hi Stuart.
Re your question about turning down a day centre place. I don't wish to alarm you, but forewarned is forearmed, I dont have personal experience of this, but have heard of other families where sometimes this can kickstart safeguarding/ best interests discussions and the state becoming more "involved."

Have you visited the day centre, I agree some of them are truly terrible, but there are some good ones too. If you find one you think your son would enjoy then push for that one instead, even if it's just one day a week. If nothing is suitable ( and remember nothing will be as good as your care, so be realistic,) then hire a different carer.

I care for S, he has autism, related LD, health conditions and sorting out his future is scary as I too have trust issues that others will support him well. However, he does do activities without me - he goes to a follow on service during the day at his college, to a couple of clubs etc This is good preparation for the future (and keeps us both sane!)

Does your son enjoy going out anywhere? Swimming, walking, sensory rooms, fair rides, riding for the disabled? What does he like doing at home: music, DVDS, sensory stories, massage, footspa, vibrating toys, YouTube? These interests are what you are looking for in a day service plus more besides, as our young people continue to make progress ( albeit tiny steps throughout their lives.)

Melly1

[stuart_1509]

thanks for that ive spoke to a social worker who tells me the same that it would lead to a meeting of intrests i find this hard to swallow as i would allways do my best for my son but again it seems the state can control how to bring up your kids and force your hand,,the day centre he goes to does nothing to stimulate him he is left in his wheelchair and often falls asleep because hes so bored. i try to give him new events to keep him intrested and alert but this apparently is wrong because the care team knows best.

[bowlingbun]

When did your son last have a Needs Assessment, Care Plan? You, a Carers Assessment. Were you given written draft copies? Is what was agreed actually happening? The SW sounds like a bully. Ask for reviews of both plans, in accordance with the Care Act. Do you have something like a Parents Association, or similar, for the day service?

[Lindi]

My Brother is 78 with Learning Disability. My Mother was 17 when she had him and looked after him all her life until she died at 86. My husband and I took over his care until my husband died a year later, I had an awful job getting any help as he had seemed to slip through the system. Anyway after much fighting and determination he now goes to a Day Centre which he loves, they are marvellous and I can't praise them enough. They also give me all the support I need, we work as a team, if it was not for them and my SW and Carers Uk I would totally be on my own.

[Melly1]

Stuart, is it a council day centre? Does it have unfilled places? There may be an ulterior reason for wanting your son to attend. Our council pays to keep some council day centres open and staffed no matter how service users ( I hate that term,) attend. The staff are long standing council employees, paid extremely well, the centres aren't regulated and some of them are awful.

Unfortunately once our children turn 18, we have no rights to say what happens to them. The best professionals respect our knowledge of the person, the majority presume they know best. Also most decisions are about saving money.

Are there any other day centres that would stimulate him more? If not, then I think you should continue with the DP, even if it takes awhile to find someone else. At least then you can set up a programme of activities your son will enjoy and get a break yourself too. Avoid at all costs the best interests meeting....

Melly1

Lindi, glad it's working out well for youand your brother.