Scope would like to know about experiences of looking after children with disabilities - please complete a survey

[AnnMumsnet]

We are working with the disability charity Scope and want to find UK Mumsnetters who have a child / children under the age of 18 with a longstanding physical, developmental or mental impairment, illness or condition to complete their survey.
By ‘longstanding’ they mean anything that has affected your child or children over a period of at least 12 months or that is likely to affect them over a period of at least 12 months.

They'd like to find out more about the support that is available to your family, and how that impacts on family life. All responses are anonymous.

There's no incentive for this one but responses will help Scope!

The survey link is here: www.surveymonkey.co.uk/r/DKN3F78

thanks and best wishes

The survey shows a basic lack of understanding regarding caring for children with disabilities. For example, no option to pick ‘my partner and I have both had to reduce our hours and work opposite shifts as childcare for children with autism does not exist’

Another one who is no longer eligible as my child is now too old.
And yes, he is a child and always will be

Totally agree with Ginger.

Another (yet another ...) survey? When nothing will change for us carers? I won't waste my time, thanks ....

And - as a mum to a child with CP - I am not impressed with Scope

Totally agree. I dread my dc's getting older and my limited support disappearing. And I worry constantly about how my youngest is going to be when we are both older. Managing a non sleeping, soil eating, incontinent 3 year old is going to seem like a piece of cake compared with doing the same when he is a fully grown man and I am an old lady. I also have a 4 year old who behaves like a 2 year old. It's not too bad now but what about when he's 20 and still wants to go to the park/softplay. Or greet his drs with a hug. Or when people think he is drunk because he can't walk in a straight line or without falling over. At the moment it's OK because he is still little and cute but one day he's going to be a 8-9 year old trapped in a man's body and it's going to be different.

I’ve filled it in.

Cuts are being made to SN support in schools all over. DLA is harder to get. We are offered no therapies or help. It is shit and lonely and depressing .

Why do people think another questionnaire will help? The charities know it is awful and support is diminishing and we are in crisis. No one really gives a shit.

Financial support should be more affordable? Ummm ...

Terrible survey just guides you to say how awful life is with severely disabled child. Scope knows services are continually cut as they’re cutting their own. They know no one cares about Carers until they’re suddenly hit with their own problems. There is a horrible feeling in this country that only the achievers matter and the vulnerable are left to struggle. It all stinks. I’ve had 17 years off the same drivel spouted by professionals who mostly go home and forget about you at the end of the day. School is being cut to 3days say no more and they wonder why parent Carers are bitter and cynical arrrrrghhhhhhhh

Yes, no one gives a shit about carers and/or disabled children anyway. Fed up of surveys.

Survey completed. But For what? Not only does no one ever consider the real life of a carer but our children are fast becoming labelled drains on the countries finances as disability support is being withdrawn to cut costs along with the financial support they require just to live day by day.

Not sure my answers were worth much. No real answer for 'I work full time but my husband doesn't' nor acknowledging that burden I feel of the financial responsibility resting firmly on my shoulders, whilst also dealing with 'stuff'.

This is terrible to read. Terrible. I wish I had something useful to add but I don't. I'm just so sorry all these people are going through this with no help or very, very little.

The people we should be supporting most of all are being let down!

Have done it. What good it will do is questionable. Other people are right. No one cares about disabled children or their broken parents/carers.

My son is 19, with CP and Autism so he is too old to be covered with the survey.

I wanted to say my piece though. The little I have acheived over the years was all because I fought so hard to get it, no-one wants the disabled or carers to get any help.

I will fight till I have my last breath for him, but it disgusts me how badly we are all treated.

Carer's are so totally under valued.
I have just taken a part time job,after years of trying to find one that will fit in with my caring role (for disabled dd,10) but I have to be careful to make sure I earn less than £116 a week or my carers allowance will be taken off me.My child tax credit has dropped considerably too.
It astounds me how much we are treated like shit & just expected to cope.
I live in fear of dd reaching adulthood & how the lack of services will affect us then,especially as she will need a carer for the rest of her life.

I've completed that survey but it is abysmally written. Eg on one question I said I'd never had problems with something, the next question then forced me to explain what was wrong - er, nothing? And the last section was ridiculous, you either had to say something was a problem or answer "don't know" - no option to say that something WASN'T a problem for you.

The reason surveys don't change anything is precisely because they are written like this. What politician will bother to change something when the respondents to the survey didn't even have the option to say something was fine? A survey which forces people to answer in one way only isn't a fair one. It's like asking:

Q. Do women still face discrimination in the workplace?
A1. No, discrimination used to be a problem but has been stamped out.
A2. No, discrimination was never a problem in the first place.
A3. Don't know / care.

It's not a fair question, and neither are the ones in this survey.

I filled it in but am reasonably bored of the autism charity sector and media constantly focusing only on the cognitively-able half of the autism spectrum. There seem to have been about 10 TV shows in the past month alone and not one with anywhere close to my son's more classic autism. Of course the cognitively-able half of the spectrum also deserves attention and has difficulties, but I think there is a bit of a 2017 equivalent of the bunging of severe kids away from sight in institutions going on - with the media rarely focusing on non verbal or learning disabled autistic kids, only on outliers and success stories like top BBC presenter and recently diagnosed Aspergers chap, Chris Packham. Realise that all sounds a little bitter, but agree with others who say the carers of more severe kids are ignored, taken for granted, patronised. Maybe time for a fightback, although we are probably all too knackered.

I am the mum of a 25 yr old with global delay and autism.

She is pretty high functioning - has a job inputting data in an office.

But she is reliant on me to look after her - I need to be aware of who she is socializing with ( she is very vulnerable) and I have to manage her diabetes. She wouldn’t be able to live on her own without getting herself into a pickle so she lives with me.

Which will be forever / until I die

I get no help.

It was better when she was little a I got respite and DLA and we had a social worker but she fizzled out like the respite. DDs DLA was stopped after 24 years because she doesn’t warrant any extra help ( because I help her and I cost nothing - if she was in some sort of protected accommodation then that would cost the govt. a lot more money)

I contacted SS a couple of years ago and I was told she couldn’t have a social worker as we hadn’t needed one for years and we were obviously managing

So - it’s hard when they are small but when your child grows up it becomes almost impossible to get help.

Sorry for rant but I am feeling quite angry

I would love to start the Revolution sickof but they love the fact that we don’t have the time or energy. Yes yes to the fact that the most severe children are overlooked. My local council is constantly patting itself on the back getting disabled children job training opportunities and having a say in their lives. Brilliant for those who can but what about those who can’t? what about the unglamorous fact that some kids will forever need total care and someone to speak up for them.

I have 5 year old, 12 year old and 15 year old with autism. 12 year old has other delays including physical. I don't have a social worker, just get the odd one, always someone different, when a problem arises. I've struggled to get some respite, but it was given grudgingly.
I may have to give up my job soon, because of all the cutbacks in SEN transport, it'll take me an hour to get two kids to separate special schools and back. The 15 year old is high functioning, but anxiety ridden and suicidal.
You can't have a life if you're a carer.
Every little thing is a fight, every tiny need.
I'm tired of these shitty surveys, bloody LA asks us to fill in questionnaires constantly because they want to 'improve' services, you just know something else will be cut back
I'm already worrying about my 12 year old moving into adult services.
No way could he manage without me.

Scope? Oh purlease. What a waste of space they are.

It's good to be asked for our views. Just hope the new stance on influencing policy has some impact.

It is very sad to see how things are going terribly wrong in schools for children with special educational needs and disabilities. The recent changes to the statement process and cuts to school budgets have put us back years in terms of support for our children

Our NHS services have been excellent so far but are becoming harder and harder to access. What is really, really lacking is support for parents of newly diagnosed children both emotionally and financially. Just suck it up and get on with it seems to be the attitude we have encountered!

Just posting to send to everyone walking this lonely and difficult road. My dbs dd has complex medical needs and PMLD and I am helping him access support. Everything has to be fought for and everyone just wants to offer advice lines and info on the EHCP form

Provide respite Scope

.

My son is 18. Things were settled (he was in his own flat in a fantastic residential home very close to home, I saw him nearly every day). Then the home was taken over by a corporate company who use the word ‘profit’ more than once on heir website, he was served with under two weeks notice and despite the best efforts of the LA & NHS (he is joint funded - has very complex needs) has ended up seven and half hours away from home in a hospital.

I was due to start retraining (as a SALT) in September and had actually started working outside the home.

With months of meetings, 15 hour round trips and having had ds1 home here as an emergency for a couple of weeks (other kids had to move out) i’m back to working for myself from home (& very lucky I have very niche qualifications that allow me to make sensible money doing that)

Wondering whether there is any point even bothering to try and retrain. Honestly, ds1’s providers were perfect for him - I never imagined it could go so wrong so quickly. It’s going to be hard to ever trust that he is safe and settled again.

I agree with everyone. No one care one shiny shit about carers especially of disabled children. It's like we don't exist. Even my gp doesn't give a shit enough to register the fact that I'm a carer and had to give up my career, my life, sleep, mental and physical health to look after my daughter despite having taken her there for years and the now desk crippling amount of discharge papers received from tne hospital.

I just want people to do something!

When all three political parties went to general election I looked at all tne manifestos not one of them was willing to do anything to help carers. There was talk about theroti cal help but nothing about how and when they would step in.

I think as a carer of a disabled child you literally have to be at a point of handing your child to social services and walking away before you really get any substantial and useful help.

And what really pisses me off is I had to give up a decent career as a Solicitor to care for my daughter who unexpectedly has epilepsy and am now on the shit sum of £62 a week. I would love to work but with weekly seizures it ain't happening.

The amount of money a carer gets in this day and age is so shockingly shit especially when you consider how much money caring for your child at home saves the government and i believe that is the reason why carers are looked down on so much because what the govt is really saying is fuckoff with your pittance and be grateful you get it!

OK rant over!!