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Not coping very well at all :(

(8 Posts)
gallifrey Mon 24-Jun-13 13:14:31

I am disabled with a back problem and fibromyalgia, I am married with 2 children and finding it very difficult to cope with everything.
I cry every day while trying to do housework, every time I have to pick something up it hurts so much to bend down.
My dh does what he can but he works very long hours and is often tired himself, I know he feels resentful about doing anything when I've been at home all day. My older daughter is nearly 10 and is quite lazy and doesn't ever want to even clear up after herself let alone help me.
My other dd is 2 and a real handful, I love her so much but sometimes I regret even having her as she makes so much mess and climbs up and gets things out of cupboards and nothing I do makes any difference.

Is there any help I can get? I have adult social services coming next week to do an assessment but last time they came I was told I wasn't disabled enough to get a carer.

PearlyWhites Wed 26-Jun-13 18:30:59

I doubt it I don't get any help but I do take advantage of that fact that because I claim dla we are eligible for help with child care from tax credits. My younger dc go to nursery part time a I can't do many activities with them on my own and I get so tired.

gallifrey Thu 27-Jun-13 17:42:24

I don't think we would even get tax credits because of my dh earnings.

fabergeegg Mon 01-Jul-13 23:18:52

Hello, I'm so sorry you're having such a tough time. This is something I know a bit about because I'm a mum with disabilities too. I've just come to the end of a nine month period during which I received 10 hours per week of assistance with parenting (we used the money to pay a local girl to be a Mother's Help and topped it up ourselves. Worth every penny!) I regret not having seen your post sooner, ahead of your visit from a social worker. I'm from Northern Ireland where things are organised slightly differently but the principles will be the same. I'll number the points just to stop myself being repetitious (can happen!):

1. You're entitled to request an assessment of your parenting needs as part of an assessment of your health and social care, provided that you have children under the age of 18. Most parents with disabilities do not seem to have been able to access this. You might well be told that these assessments never include parenting needs. This is wrong but it's quite likely you will have to say that it's wrong and refuse to back down.

2. You may be told that the only way you can receive help with parenting needs is by having your child registered as 'at risk' (or equivalent) by a children's social worker. This is also wrong and exactly what is not supposed to happen. Again, you may have to say this and keep saying it.

3. Your social worker (from adult social services) is supposed to liaise with a social worker from children's services. That means the situation for you and your daughter is evaluated from both points of view. Then the two teams are expected to work out between them who is going to pay for what. Expect delays and refusals.

4. Parents with disabilities can and do receive support for assistance with parenting needs through direct payments. (That means help with a nursery place isn't necessarily the only option, if that's not what you want.)

5. You'll get nothing without a fight and you'll have more chance if you write to your MPs, the head of your area for social work (aim high!), the Equality Commission and your local Human Rights Organisation. A convention called UNCRPD was signed up to by the UK and in it, the rights of disabled people to start and raise families was protected. There are other things like this. In order to ensure that the government acted on its agreement regarding the rights of disabled people, the Equality Commission and the Human Rights Organisation were given the role of 'big brother' to make sure they kept their word (also known as an 'independent mechanism'). That means that if you write to either of these organisations reminding them of this role, they may well employ a barrister and bring your case to court. However, it's far more likely that your social worker will become much more helpful if they think your case is being 'monitored' by social services. In my case, that meant the suddenly introduction of a 'temporary care package' that meant 10 hours a week assistance with childcare. Your MPs could be helpful in requesting more information about how your case is being handled.

6. Any help you receive may be means-tested.

7. Without DLA, I'm not sure the outlook is very bright. But if you do have DLA on the middle/higher rates, I can't see how or why a decision would be made that you aren't 'disabled enough' to receive help. I don't know if you have DLA or not - if not, this may be the time to go after it. You may have to push your GP for his support and confirmation of the extent of your disabilities. If you see another healthcare professional who is sympathetic, it may be helpful to include their report with your DLA application, and to request that they write a report for the GP's use as well. You describe doing things that you can't keep doing, because of the pain. Be careful you fill in the DLA form to reflect this (i.e., you effectively can't do something that causes severe pain). My local Women's Aid were so helpful in filling out the form.

8. If you're living in certain area of the UK, there are a couple of great charities who can help with information and sometimes advocacy. Check out Disabled Parent's Network and Disability, Pregnancy and Parenting International. Both are easy to find via google and have good helplines. They also have facebook pages where there is a lot of information sharing.

I'm sure I'll think of other things and will update. Good luck!

fabergeegg Tue 02-Jul-13 00:52:21

Just read over that and realised in point 5, I meant to write: 'it's far more likely that your social worker will become much more helpful if they think your case is being 'monitored' by the Equality Commission - not social services! Also, further to point 7, about your not being 'disabled enough' to need help - this is an important point. Social services do have an 'eligibility criteria' and you must be regarded as 'disabled enough' to require help, yes. But in deciding whether that criteria is met, social services are required to look at all the needs in context (that is, when all the needs are added up and the implications become apparent) and they are required to consider what the possible consequences are of failing to provide help. If the consequences are that significant harm will be caused to your role within the family (or you)(and Northern Ireland may be different from other places in this, I'm not sure), they're required to respond to that regardless of eligibility.

gallifrey Tue 02-Jul-13 08:21:04

omg thank you so much, they are coming this morning to see me.
I will let you know what happens xx

gallifrey Wed 03-Jul-13 21:05:27

faberge thank you again for all the advice, I will have a chance to use it again because I am moving and it's a different county so I will have to get an assessment there.
I am much clearer now what I need to ask for and hopefully will get the help I need.

i know how you feel.
I have RA and having a bad week with it I understand how you feel about housework then kids messing it up minute you have hoovered.
try and talk with your hubby when you are both calm.
I sometimes feel not even the nurses really understand only the people going through the same things as you can. big hugs. Xx

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