Who can I contact about getting my child to s... - Pain Concern

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Who can I contact about getting my child to school and help around the house?

Suedub profile image
24 Replies

Iv suffered from CP for yrs but have recently become housebound. My husband works and I don't have any family around, I don't know when il be able to bring her or if ever, im scared and hate how dibilataed iv become. Cant get a stright ans from doc ect have asked for a wheelchair but no go I dont know who can help. Would be grateful if anyone has any ideas. ..

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Suedub profile image
Suedub
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24 Replies
mich6666 profile image
mich6666

Wot area do you live???

Bananas5 profile image
Bananas5

First port of call is the Social Services. You can make a self referral.

Unfortunately as it is you who are disabled and not your children they won't help with getting them to schooll.

But do speak with them and they may be able to give you some home care. You will be assessed of your needs, means tested and and if you fall withing their charging band - have to pay.

Do contact them first though. ASAP

Pat x

beauty96 profile image
beauty96

First I would ask the school for help and let them know the situation. Your youngsters may also need support.

Second I would ring [I assume you are in the UK] adult care and get someone round to see you ASAP.

Third I would also see my Minister/Vicar or whoever if you are a church-goer, if not see the local C of E who have folk who can come and see you and then suggest some help.

Fourth I would phone social services and also speak to a self help group if there is one for CP. Sure there is.

All four bits to do ASAP Good luck and sending hugs and a huge bouquet of flowers and if allergic to the flowers I promise they will be polyester.

Poppy_Ann profile image
Poppy_Ann

good luck with social services, myself was assessed by them and they did come and fit three hand rails two in the toilet and one in the shower and that was that, i live alone and most days i can hardly get out of bed i go weeks at a time with no contact from anyone except for on the internet, now with the weather getting colder again i know i will have to order my shopping via the internet and pay for it to be delivered when i applied for DLA they did not even ask to see me and just said no you are not entitled to anything so i asked for a appeal form so then they just said they have taken another look at my case and gave me the lower payment for help in the home which is £84 per month and told me that i was not entitled to anything for transport as i had told them that i can manage to walk around 75 yards on a good day but it was in pain they said that i had to be not able to walk at all to qualify when i see some of the people who get the full benefit and a free car park up on a double yellow line put a disabled sticker in the window then jump out and run to a shop or the others who carry a walking stick but never put any weight on it on the odd times they put it down on the floor pretending to be disabled.

it appears that you have to know the system and just put down what they want to hear not what is wrong with you then they get the maximum there is to have.

again i wish you luck with getting any help from them.

regards Poppy Ann.

Bananas5 profile image
Bananas5 in reply to Poppy_Ann

Sounds like you've had bad advice. We all got turned down on first DLA application. that is normal.

Check out the new PIP. Even though mobility and walking has lowered to 20 metres - it does contain the words, safely, repeatedly and in a timely manner. So yo may get some help after all.

Blue badge criteria isn't only about whether you can walk. Sensory loss is also counted for a badge.

Go look on line at the Benefits and Work site, There is some excellent help available and tells you heaps of info.

Good Luck

Pat x

earthwitch profile image
earthwitch in reply to Bananas5

I didn't get turned down first time on DLA application - its not inevitable. You just have to make sure that you get absolutely excellent advice and help filling out the form. CAB benefits advisors are really great as they can tell you how to word your answers and almost more important, what not to say - often its just a matter of using the right words to make sure the decision maker has enough to tick boxes. Same goes for blue badge or PIP - get advice and don't try to do it on your own, because unless you have access to the decision makers guides you won't know what it is they are looking for.

Bananas5 profile image
Bananas5 in reply to earthwitch

My mistake i misunderstood you.I thought you said you couldn't get DLA mobility.

If you have access to CAB that's excellent - hang on to them.

It is definitely knowing the key words they look for..

I was only trying yo offer some help from a long in the tooth Welfare cuts campaigner!

Pat x

pinknosedcat profile image
pinknosedcat in reply to Poppy_Ann

re your DLA claim, have you heard of benefitsandwork.co.uk/ ... they are brilliant. Sounds to me from the little that you wrote that you didn't fill in the forms properly. this website produces fantastic guides to filling out all benefit forms. I hate to say it but there is definitely a right and wrong way of filling in the forms, that doesn't mean telling any 'porky pies', it just means knowing exactly what they are looking for so you don't give them info that confuses the issue. When I first applied for benefits, (having absolutely no experience) I was turned down regardless of the fact that i was bedbound for two years. I've found it's really easy to give too much information when in actual fact they don't need to know absolutely as much as you can think of (which was my error), they just want their parameters met. I learned soo much from this website I would recomend it to anyone filling out forms. Also if you are really knackered it will help you very much if you can contact an advocacy agency/charity. you may have to wait, but having an advocate also makes a huge difference to how seriously they take you. hope this is useful for you.

Calceolaria profile image
Calceolaria

You have a legal obligation to get your children to school. Children's Services or what used to be called Education Welfare should be asked for advice. You and the children need help with this task. I'm assuming they are young children. It is true that Adult Services cannot help with tasks directly relating to children ( stupid interface between to often warring services) but they should come and assess your needs and even advise and provide assistance with benefit applications. Some Local Authorities have Benefit Assessment teams who will try to maximise your benefits ( so you can pay for their services, ha ha.) Local Authorities have been held down by Central Govt funding. Budgets are carefully monitored these days but you do have entitlements as outlined above. Adult Social Care Assessor teams still have some actual old time, holistic, listening, skillful Social Workers. I hope your referral is allocated to one if them.

vivikin profile image
vivikin

Hi on the children getting to school and back, could you ask the school if there is anyone who is taking their children to the same school and could they collect them on the way, I know that's what they did for my neice when she had this problem. try to get all the help you can don't be put off from asking. good luck x

Reykua profile image
Reykua

Hi, Suedub,

You haven't mentioned how old your child is. If your child is still in school, you would definitely qualify for some assistance from the school. They should be working in partnership with their Family Support or Early Intervention Services (the family support arm of Children's Social Services).

Don't be alarmed. The main reason these services exist is to ensure the right type of help is given to families using a multi-disciplinary, multi-agency approach without involving them in the whole Social Care rigmarole - unless it's required.

These new services work in partnership with other local organisations such as HomeStart (if there's one in your area) who may also support you in your home - if you wish, to help you to get your child dressed and ready for school - if necessary.

However, as Vivkin said, it's often less stressful to make your own arrangements with reliable and trusted neighbours or friends (or someone recommended by the school). This approach would definitely help you to feel more in control, more resilient, confident and hopefully, more self sufficient.

Do keep in mind that these services are funded by you, your husband and all tax payers and are supposed to provide you with the much needed support you so obviously require at this time. Please utilise them as much as possible without letting them 'taking over your life'

Hope this has been useful.

Stay positive, stay strong

haribo36 profile image
haribo36

Hi there,I get help from adult social services as I have fibromyalgia and I have no support and Iam a single mum.I don't have to pay and I get 35 hours a week help.I have what is called a personal budget where I pay two people to be my carers.Part of the help I need is with my two kids and they take my 5 year old to school and pick him up as well as helping with looking after kids.I wasn't told that I couldn't get help with my kids but maybe it differs in what area you live? You need to ring adult social services and ask for an assessment of your needs x

Hello BOB here

Ask the GP to refer you to a Occupational Therapist, they will visit you at home and look at your needs at home, also they will look at your mobility and they will then put you in contact with Social Services for assistance in the home. They will decide what you are entitled to and any other things they can help with

Both of above is better to be done at the same time as they will complement each other.

All the best

BOB

Bananas5 profile image
Bananas5 in reply to

Welcome back Bob. Missed you.

Pat x

in reply to Bananas5

Hello Pat

Nice to be back with you all

BOBx

angelontheroad7 profile image
angelontheroad7

First phone Adult care who will ask u if u will need a carer. They come to access you then if you need more help, they will sent Occupanal Therapy. It is the OT that can say if u will need a wheelchair and make a referral. While the adult care will sort out the carer

I think it's more or less covered, but don't forget CAB, there are many obsure charities that may be able to help, with things around the house, a buddy to take children to school etc

I would suggest an official person from a recognised agency with all the correct police checks and training to take your child to school, rather than a friend. This protects your child and also protects your friendships. It is a rather unfortunate development in society all the mistrust around children.

Your husband should discuss this with his work to, he may be able to have discretionary flexi time so he can drop the children at school, then there is only the afternoon pick up to arrange. Depending on the type of work, he may also be able to do some from home one day a week, so that you have some company.

welshnut profile image
welshnut

If you are in need of a wheel chair and your gp will not refer you to wheel chair service ring your local red cross who do wheel chair loans to those in need.

As for getting your child to school there may be home to school transport already in place via minibus so worth asking the school about this and what it will cost. I would definitely ask to be referred to Occupational Therapist and self refer to Social Services.

best of luck nutty

ps welcome back Bob x

pinknosedcat profile image
pinknosedcat

As well as contacting social services, make sure you get an Occupational Therapy assesment (usually through social services, but I think you can instigate them through your GP, mine was instigated by the housing dept). Also have a look at benefitsandwork.co.uk/ they are extremely helpful and knowledgeable about all things benefits related. I can't recommend them enough. if i think of anything else I'll let you know.

painfullypainful3 profile image
painfullypainful3

My daughter isn't well and like u can't get the kids to school herself she has a 6 year old and 5 year old twins and the school provides a taxi to pick them up in the morning and bring them back home,get in touch with the school and enquire about a taxi the school also pays For it,for the home help like everyone else says social services can help u there they even have volunteers that do lots for ppl in ur situation.......good luck to u x

nedd profile image
nedd

There has been so much good advice already. Has you child started school yet or are you just worrying about it.

Let the class teacher know and pick her brain.

If your youngest child is under 5 you can self refer to Home Start

When things were tough in our family I did just that. I took my courage in my hands and rang them up. They are a charity and offer free support.

They were so helpful and understanding. We had a lovely lady that gave me a reassuring hand on my back and made her visits fun for one small very sick little boy.

They are a non intimidating non judgemental way of finding where help elsewhere. I didn't even have to fill in a form, she just fetched up one day and became a friend.

Here is a link.

home-start.org.uk/about_us/...

Honest just ring them up, if they have a branch in you local town.

Let us all know how you get on.

Good luck

Suedub profile image
Suedub

Hiya peeps,

Thanks for all the advice. In answer to your questions, ive got two kids the eldest is my son hes just turning 12 so he takes himself to school and my daughter is 7, iv talked to her school and her school mentor is great she is trying to find a way for her to get to school i did get a phone call from someone before half term saying that they might be able to help with getting funding to get a childminder to take her but she didn't say where she was from and if she did i cant remember, she also said something about someone coming out to help me with my benefits claim for ESA as that was stopped in august as they had me on the employment not the support and they had over paid me for a year which was their fault so i don't have to pay them back, I did send an appeal letter but have heard anything back iv been in hospital and am now housebound also i don't know where to start my brains not at its best with all the pain. I get DLA already am on higher rate mobility and lower care and tats indefinitely so im scared to rock that one the way there stopping benefits all over the camp. Iv had one of the kids in her class take her but shes pregant so tats going to be a problem and they were all sick this wk so had to figure something else out but my daughters been sick since tuesday so it wasn't a problem but i need something permanent in place aside from other parents.OH did put stuff in place when i got home from hospital the usual commode, frame, and other aids and told me i had to get a bed myself for downstairs because i couldn't do the stairs, they also said i couldn't use the shower because its in the bath, they said someone would come see me when i was home but tat never happened. I was left with trying to deal with it myself, the hubby helped me up the stairs so i could sleep in my own bed and then dragged me back down to the couch at six every morning i was in bits still am but there you go. so i need to get an assessment from social services and go from there???

nedd profile image
nedd

Thanks for up date. You do have a lot on your plate, but it sounds like you are getting there. Just keep reminding them that you still need help.

May you find the energy that you need.

Good luck

Reykua profile image
Reykua

Hi Suedub,

Hope you are as well as can be and coping.

I know you sought advise and support from the forum about a month ago and was wondering if you'd been able to get in touch with your local Social Services?

What many people don't realise is that if you have a partner (who is able and healthy), you often don't get much assistance from social services in terms of supporting you with managing the children and your home.

Do let us know how you get on with information and advice on anything that may be useful to someone else on the forum as things are changing so fast regarding welfare and support for people with disabilities that we need to keep ourselves as informed and prepared as possible.

Thanks again for posting. Hope things are better and you're not stressed out by the prospect of Christmas.

Look forward to hearing from you.

Stay positive, Stay Strong

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