No help available?

zaksmum

My friend has a very severely disabled son who's 18. She has always cared for him at home but now is at the end of her tether with him.

He's unable to speak and is in nappies. He's self harming and screaming and throwing things most of the time. My friend is incredibly patient with him but is starting to feel she can no longer cope. He's around 6ft 4inches tall and 19 stone so you can imagine the difficulties.

Her social worker says that there's no funding for any help for her. While she doesn't want him to be permanently in residential care, even a few days a month respite care would be a blessing to her.

I can't believe that, apart from the medication he's on that has no effect, there's just no help available in a situation like this.

Is the social worker just fobbing her off?

Nicki

Each area decides it's own priorities about services for disabled adults and children. What's available in one area may well not be available in others. For example in our local authority there is a hotel for disabled adults, which can be accessed for respite purposes a set number of times per year, but that is regarded as innovative.

As a parent of a disabled child (under 18 though) I have noticed how drastically services have been cut for her in our area over the last year or so, and the SW may well not be lying when she says there is nothing available. Whilst just about everywhere will have some emergency provision in case for example the sole carer suffered a debilitating stroke, as budgets shrink the criteria for accessing these become ridiculously high.

If finances permit, perhaps she could afford a respite carer to come in a few hours a week to give her a break if no state funded care is available, so she could at least go out and have some relaxation time regularly. Here, in London, the going rate for that is about £11-15 per hour but it could be cheaper in other parts of the country.

Gazing_On_Sunsets

How awful. Are there any organisations or charities, either general ones for people with disabilities, or specialist ones for the son's particular needs, that can help? They must be able to advise. Sometimes only "the squeaky gate gets the oil" which is terrible I know, but it's people who push who get help. So wrong, because when you need help, the last thing you want to do is have to push for it.

I did a quick google for advocates for disabled people, a lot of the results were for children and being 18 he might be out of that category now. What about the local council? I know they have no money, and the social worked might be seen as speaking on behalf of the council but that social worker is but one person; it may pay to go over their head and seek answers directly.

zaksmum

Gazing_On_Sunsets wrote: »

How awful. Are there any organisations or charities, either general ones for people with disabilities, or specialist ones for the son's particular needs, that can help? They must be able to advise. Sometimes only "the squeaky gate gets the oil" which is terrible I know, but it's people who push who get help. So wrong, because when you need help, the last thing you want to do is have to push for it.

I did a quick google for advocates for disabled people, a lot of the results were for children and being 18 he might be out of that category now. What about the local council? I know they have no money, and the social worked might be seen as speaking on behalf of the council but that social worker is but one person; it may pay to go over their head and seek answers directly.

My friend did get some help when the boy was younger - some organisations offered a carer to take him out for a couple of hours, but as he's got older and bigger, they've said they can't cope with him as he attacks them, even while they're driving. He doesn't realise what he's doing.

I agree though that if you make a fuss, more help might be forthcoming, but my friend's just so defeated by it all now.

I just feel there must be some way of helping her before she has a total breakdown.

Nicki

Gazing_On_Sunsets wrote: »

How awful. Are there any organisations or charities, either general ones for people with disabilities, or specialist ones for the son's particular needs, that can help.

Usually though the charity is paid by the local authority to offer the service, so if the local authority doesn't fund this kind of care, then none of the charities will offer it in the area either, even if they are national charities.

For example up until recently, Barnardos supported a lot of disabled children in my area and provided a lot of respite care and leisure activities. When the local authority pulled the funding, Barnardos shut up shop completely in the area. There are lots of political arguments as to whether charities should allow themselves to become so reliant on government funding (local or national) and to become the third sector, and this is one consequence of them moving in that direction over the last 10 years or so.

make_me_wise

I have total respect for people like your friend OP. She must have to cope with so much. I am afraid I cant offer much advice as I have no experience of what she is having to cope with.

Although this wont help the OPs friend as her child is too old, for anyone with a disabled child under 17, have you heard of the family fund organisation? They give grants for things that make life easier and more enjoyable for the disabled child and their family, such as washing machines, driving lessons, computers and holidays.

Hope this helps a little.

zaksmum

Thanks Nicki, it's true that any help that was available has ceased now that he's over 18 and considered an adult. The major charities can no longer help and even the social worker changed from a children's to an adult's.

Make me wise, yes, she knows of the family fund association. They gave her a washing machine and tumble drier to help with the horrendous amount of washing her son creates as he has a bowel condition too. But of course as he's 18 he's too old now to qualify for further help.

BitterAndTwisted

Perhaps a total breakdown, or something which looks like one, is the only thing which might procure the kind of help she needs? Imagine the kind of funding it might need to have that young man looked after in permanent residential care. Much, much more than caring for him alone at home

zaksmum

BitterAndTwisted wrote: »

Perhaps a total breakdown, or something which looks like one, is the only thing which might procure the kind of help she needs? Imagine the kind of funding it might need to have that young man looked after in permanent residential care. Much, much more than caring for him alone at home

That's what I thought too. If she becomes ill or completely unable to care for him, surely the authorities would then be compelled to step in and look after him?

The way things are going, she WILL suffer illness. I can see her falling apart more each day. She's getting no sleep and trying to calm him day and night...it's really taking it's toll on her.

SCFC1961

Perhaps your friend could benefit from joining the local Carer's Group, as she could get the much needed support she deserves (and needs) and they should have practical information that would help.

(((Hugs))) to your friend.

BitterAndTwisted

Mothers have been known to take things into their own hands once they've been pushed right over the edge: one only has to read the headlines once in a while to understand how they have been made to cope and suffer all alone with no help on the horizon. Who's interested in this lady's welfare? Is she getting any support from her GP?

I'd be tempted to throw myself at the door of any mental-health professional I could think of and claim that coping alone like this any longer is impossible without being a danger to both.