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

I'm a carer for my ds who has HFA and Prada Willi syndrome. He's 14 years old and 6ft tall and weighs 20 stones its bloody hard.
I myself have numerous health conditions including fibromyalgia and BPD.

On top of the above, I'm also an unofficial carer and general dogsbody for my dgm who has dementia, life is bloody hard.

I'm permanently poor and sick. My mattress has spokes sticking out of it so sleep downstairs on a sofa which the arse is falling out of.
How can I care for 2 people with very separate needs when I'm not looking after myself properly? I am so bloody optimistic in real life as my ds is very anxious and I never want him to worry.

His dad, my ex is too wrapped up in his new family and most of my own family don't accept ds has HFA. I get to the end of the day after being verbally abused by dgm, exhausted with life and taking 34 tablets for pain and MH and just wish I could have one day pain free and some normality in my life but the sad thing is, I don't even know what normal is anymore.

So sorry for all of you, like me, caring for our loved ones and suffering too

I have a child with CP and autism. She is now in special needs education for secondary (autism specific school) so we are managing well on that front but the care for her CP has slowly got worse as she has gotten older. She sees physio in school once every six weeks if she’s lucky and they won’t do home visits or school holidays. Wheelchair services treat you like you are asking for the blood of their first born child - she’s almost 12 and I still wash her as she cant climb in and out of the bath herself. Then because of her autism she won’t actually think to wash her hair etc without visual aids so I end up having to prompt/do it for her. Nobody gives a shit and it’s just getting harder all the time.

I clicked to link to that god awful survey and have found people who get it!!! I have two dc both with autism. My youngest is 4.5 and non verbal. I am petrified of them growing up and panicked should something happen to me. We get fuck all help. No one gives a shit about kids with special needs or carers. It’s disgusting!

also anybody noticed that this is one of the very few external surveys on the survey board that doesn't give you the chance to win some vouchers or cash - very much business as usual for as carers though.

The shite after school club at my child's school refused to take my son as they didn't know how to support him or want to. I had to leave my job because I couldn't find alternative care.

The NHS services for his condition have been cut so no referrals available. DS doesn't qualify for EHCp because academically he is doing well... emotionally and behaviourally he isn't.

Miserable and exhausted barely begins to describe how let down I feel. My only silver lining is that I no longer have to run the gauntlet of the benefits system. I dread to think how anyone manages this kind of nonsense alongside of the insanity of universal credits or housing benefits.

I'm on AD due to my children's issues, my dh doesn't work so I can study. Yet, it's deemed that my youngest doesn't meet criteria for assessment. What utter crap!

I completed this survey as I felt I should respect Scope, however as soon as I submitted I was sorry. My answers in no way reflect my life. An early q regarded hours at work, I had arranged baby/toddler friendly hours early on so work full time during term time but the options were ft or pt. I answered ft, but my husband works ft too and between us we ensure that one drops off at school and one collects. That doesn't sound bad but I will never be able to progress in my job, there may be a breakfast club at my child's school and legally I can demand inclusion but at what cost? I would not do this to my child. Despite me always making time up for salt courses so far, my employer is aware of my commitments and would never promote me as they need flexibility. None of this is broached in the survey and I am sorry I completed it really.
The questions about outside services also did not give the opportunity to just say that once the diagnosis was made that was that really, no further input needed. Scope should be more aware of this imho.
The survey is so poor (sorry Scope), I answered 'other' many times but there was no option to elaborate. Qs 8 and 11 also rankled, the options were worse than a student on a foundation course.

I don't like in the UK because of the fact services are so terrible. We have money but even if you look privately the services are just not available. However living in New Jersey USA we get a lot of support. The DC and us as parents get a lot of support. DH and I both work FT. At school they are in the special needs group and have a 1-1 aide from 7:30am-6pm. The school encourage the special needs aides to work for families privately and two aides babysit for us.

We pay $22k a year in property taxes to live in our town. It's worth every single penny. Even in towns where the average property taxes are $8k a year the services available make the UK look like a third world country.

My DC are high functioning ASD. Yes it's hard but it's a million times easier than having a child who has a more complex disability.

Like should be live. Damn autocorrect.

I have a family member who lives in the US who is always appalled by the provision for disabled people over here compared to America

Scope was fantastic when it came to supporting our EHCP application

And then we were dropped like a stone

We get zero support outside school hours and very little during school hours as my dd's MH issues often prevent her attending -no school, no help

Where is the practical support for families?

Supermum that's an extraordinary amount of money in property tax! Is that an especially nice area?

Do you have to pay that sort of tax only as a property owner? Renters wouldn't I suppose?

It's not a particularly nice area. We pay less federal and state tax compared to the U.K. so it all balances out. You get a discounted rate if you earn less than $75k a year. Renters pay via their rent. The LL is responsible but obviously it's included in rent.

Our school district spends about $20k per child and the private schools cost about $25k a year. The reason for the high spend per child is the special needs programs. A child in a regular class costs about $5k a year to educate. The out of district placement that my friends DD goes to is $80k a year. The complex needs place is $140k a year.

I have a dd with a missing hand and bad anxiety. This survey was really hard to fill in as so many had not a relevant answer for me.
It seems to be set up entirely for the negative too, so they can use
For example the question about support groups. We have a very good one that is very accessible, although there is a small charge it is voluntary etc. There was no possibility to say that you are totally happy with the provision. The only not negative option was "not sure".
That means that Scope can put out something saying 95% of our respondents weren't happy with the support groups and the other 5% said that they weren't sure.

I'm all for people trying to find ways that the consumers feel need to be improved, but I don't like being manipulated into the answers they want. It reminds me of a local homeless charity representative who put out the statistics "98% of homeless people did nothing to deserve being kicked out of their home." They'd asked the homeless people using their service, who naturally saw that side. When I said they they'd get a more balanced side if they also surveyed the people who had kicked them out I was told that asking them would prejudice the survey!

It feels fucking shit. That ok?

I am so fed up of coming across these organisations that see their role as signposters or raising awareness instead of providing actual help and services to disabled people and their families. People need concrete help, respite, carers etc. They do not need leaflets, websites and bland info lines. I recently emailed the NAS for education advice. I received a bland, generalised advice back that made no reference to my specific situation and contained info anyone could have found on the internet. I had waited weeks for someone to get back to me. There are many great organisations but unfortunately there are far too many moving away from actually providing direct help and it pisses me off. I am also irritated with the idea of this survey as there is plenty of info out there about the impact of caring. I can't see what this report will do for people with disabilities and their families.

I care for my two sons with ASD/PDA.
There is very little support available.
I've been to my GP several times to admit that I'm not coping, to be told to ask family for more support. Apart from a couple of family members who will have ds2 sometimes, none of them understand what life is like and I feel we are judged by many people for not being good enough parents, for not having enough money, for living in a pit of despair (you try keeping on top of housework and house maintenance when you have no energy or money!), for not feeding fresh home cooked meals (impossible when having to supervise two teenagers trying to kill each other), and the hint is, I do understand the judgements, but it's really not helpful and leads to us being isolated.
We rely on dh's low wage and tax credits, I recently claimed carers allowance, but have found that tax credits have gone down by about that amount, which I didn't expect, and financially things are shit, and because the boys are HE (due to the shitstorm that is school and mental health services, and neither boy receiving any support whatsoever) I can't go out and get a job, or find the time to do anything to earn some money.
I love my children very much but life is shit and I struggle to see any way out of it.

cloud I totally get you. I wish my closest family understood what it’s like let alone strangers. The frustration of being in a cycle of being desperate to work to improve life but having no opportunity due to caring is unbelievable and leaves you so low. I love my son and would care for him whatever was thrown at me but the sheer exhaustion of having to explain myself to professionals who you feel have no understanding of the emotional and physical price we pay. Scope have sold their Care Support Packages to another service provider and are only there now to advocate and raise awareness. Pah a waste of wages.

So Scope are basically no more useful than the myriad twitter "activists" now, then?

Shan't bother filling in the survey again, then.

And the idea of asking family for help is hilarious. Mine is 100 miles away and my parents aren't in the best of health, anyhow. They can't cope with DS2 at all and DS1's selective mutism has extended to them, so when we visit, he hides in their front room and doesn't speak to anyone, the entire time. He can't stay with them alone, under these circumstances because he can't communicate if he needs anything and my poor dad really can't fathom it or understand it.

IL's are closer to home. SIL has no relationship with the boys at all. MIL could do the odd emergency hour with one of them in the past, with plenty of preparation, but is now very frail and DH spends quite a bit of time at her house, making sure she's OK, cleaning a bit and doing general household maintenance.

I haven't worked for over 14 years.

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

Shouldn't they know this already?

It’s also fucking terrifying to think of what will happen to my daughter when me and DH are gone. That scares the crap out of me and always will. It sounds melodramatic but I don’t even think I could die without having the anxiety of my daughters care in the foreground. So yeah SCOPE not a bundle of laugh truth be told.

Services are shit.
Support is shit.
Nobody gives a shit about our circumstances and the only person who seemingly gives a shit about my daughter is me and her dad.

So, SO much more could be done to help carers. People shouldn’t need to be told that. It’s painfully obvious

My son has autism which is a 'hidden' disability, for years he was treated as a 'naughty child' and I was alienated in the playground, There needs to be more understanding about this disability IMO

Scope had a very well regarded school and respite centre near me. It catered for the most severely disabled. They shut it to provide more community support - none of which was accessible to the very severely disabled pupils.

So yes I agree about the pointlessness of awareness raising. I suppose it’s cheaper than providing services - especially for those with the most complex needs.