Useful Information and Contacts

[Deb&Matilda]

Thought it would be nice to have this as a Sticky thread so everyone can use it and add to it to let other mums know of any useful websites/ contacts for our Special Babies. Im sure new expectant mum as well as us already mums will find it useful I know I would have done xxx
So please feel free to add any further contacts you might have.

DLA (Disability Living Allowance)
Care Compondent available from 3 months
Mobility Compondent available from 3 years
0800 88 22 00 - to request an application pack
www.direct.gov.uk for information.

Carers Allowance
Available to Middle and Higher Rate DLA
Apply online www.dwp.gov.uk/carersallowance
or telephone 0800 88 22 00

Entitled To Website (A Must See)
I urge everyone to work through this website as it goes through your money and tell you what you are entitled too. (As advertised by Martin Lewis)
www.entitledto.co.uk

Family Fund
Charity for parents of disabled children - helps with all sorts including travelling expenses, holidays, driving lessons (I urge everyone to apply)
www.familyfund.org.uk

Brainwave
Clinic for Brain Injury/ Illnesses in Somerset (A Most See)
www.brainwave.org.uk

Spina Bifida and Hydrocephalus Association
www.asbah.org

Please add to this thread any other contacts so that everyone can see who and where they can go for any sort of information they request. As I am internet research nerd I will add everything I find xxx

 

[Deb&Matilda]

Space Kraft
Catalogue of Toys for Special Needs Children
www.spacekraft.co.uk

Osteopath for Children
In Manchester and London.
Osteopath Clinic (Charity), Definately worth a visit is you are close enough.
www.occ.uk.com

Steps
Charity for supporting People with Lower Limb Problems
www.steps-charity.org.uk

Epilepsy Actions
Provides Information for People Living With Epilepsy.
www.epilepsy.org.uk

Contact A Family
Charity for Families with Disabled Children help to contact other people with similar Disabilities.
www.cafamily.org.uk

Hope these help too. Hope other people find other sites and people for us all to contact too xxx

 

[MrTashaAndBum]

I'll include this lot again...

https://www.bhta.net/site/351/default.aspx has some useful links for those who might want help in purchasing equipment - have a lookie They include WhizzKidz and RADAR...

There is also a company out there that makes equipment as a one-off that might not be produced main-stream - remap.

Finally, I recommend obtaining a RADAR key from your local council - it will give you access to a disabled toilet.

https://www.youreableshop.co.uk/product/small-radar-key-for-disabled-toilets-TV1060.html also sells them for about £2-3.

 

[Deb&Matilda]

Got a really good one for you xx Did you know anyone who is either blind or receving DLA can get a card which means them and one accompanying person can go to the Cinema for free. The card does cost £5.00 but lasts for 3 years and I suppose it is well worth it.
Website is www.ceacard.co.uk.

Definately worth buying xx

 

[MrTashaAndBum]

Bus Passes - get down to your local council office and get a buspass with a Carer requirement - free travel on your local buses!

Disabled Rail Cards: you can get a disabled rail card that allows a discount for a disabled child and parent - https://www.disabledpersons-railcard.co.uk/

 

[Emmea12uk]

Can i just add, that Contact a family is a MUST for anyone who is trying to claim the disability benefits. They will also help you out with any paperworks, relating to debts, finance etc. They are even setting up an advosory service. It is DEFINATELY worth contacting them.

 

[Emmea12uk]

Early Support is a government thing set up to help families with a child with multiple problems. They are fantastic. They co-ordinate all the professionals involved with your child's care and even hold meetings to make sure everything is being done that should be done, and to answer any questions you have. At Tom's last meeting we had his urologist, pediatrician, health visitor, GP, Physiotherepist and er..i cant remember the rest. But we established no one was monitoring his medication doses and they all explained things about Tom's development and his problems in more detail.

The best part about it was the casual nature of the meeting - even the consultants were chipping in on subjects like taking your child swimming etc.

DEF worth contacting them if you are fed up with trying to sort out all the people involved in your child's care - you need a referral and can get one from anyone - physios, doctors, health visitors etc.

 

[lyndsayseed1]

Hi

Am a lerker here, had to rejoin as i forgot my password
I am a special needs parent, and i joined www. specialkidsintheuk. org Found the site friendly and supportive. Just thought i would share

 

[hotsexymum]

thanks very helpfull xxx

 

[Emmea12uk]

A new website with form for families affected by spina bifida (currently under construction)

www.sbhp.org.uk

 

[fairywings]

Hi, just want to mention anyone who has a disabled child and wants to drive who doesn't can learn through the Family Fund. I did and without them I would not be now driving. (or Ryan either, he is my whole reason for learning and passing )

https://www.familyfund.org.uk/

Also if you have a terminally ill child ( like I did) you can get the mobility of DLA rushed through (so before 3), the same form as with DLA (the DS1500). Just need a GP to fill it in. I found that out too late but hopefully it may help others.

Also if you get child tax credit and haven't declared your disabled child to them (like I had not until a friend told me cause they knew of him did not know I had to or could do) you are entitled to more money. I went from £90 a week to £185 a week. xxx