What financial help is out there for baby with a disability?

Leanna86

I had my son in November last year when he was born at only 24 weeks and I finally got him home last month (wohooo :j) he is obviously classed as extremely premature (under 26 weeks gestation) and he has chronic lung disease and requires oxygen to assist his breathing as he can't do it on his own and has Jaundice and other minor problems due to his prematurity, let alone his countless medications and difficulties digesting his milk...any way I have just applied for DLA hopefully it gets approved 1st time round otherwise I need to get the hospital involved which is fine would just mean it is delayed but my question is what other help would be available?

At the moment I am on SMP until August, I previously worked 37 hours a week and my partner works part time 25 hours a week, finances are running low as a lot of any savings we had was used doing numerous daily trips to visit him in hospital for 4 months!!

Any help or tips anyone could provide would really help!!! Thanks in advance

meerustar

I'm not sure on the benefits front, but sure someone will be along later.

But what lovely news you have to have your baby home with you after what must have been a very stressful few months. Hope all goes well for you and your family x

Racheldevon

Hi there,

I'd suggest that you contact your local sure start children's centre (look on google for the one that serves your area) - they provide free services for families from antenatally til the child's 5th birthday. The staff are trained in a wide range of issues, and can provide lots of support, including guidance on benefits, and other support you may be entitled too. There is also a process called the CAF which may be able to put support in place, and there is some funding available. They will also be aware of any local funding that can be accessed, for example to support you with the cost of trips to the hospital etc.

LL30

Congratulations on bringing baby home! My lo was prem also, later than yours at 32 weeks, but vent, CPAP, sepsis, aponea, bradys, periventicular flaring etc... Had to resus her myself at home too, which was not pleasant!

Something to think about for you - the £100 a week disregard on SMP for tax credits purposes. This means that your income is approx £30 a week whilst on SMP when calculating your income for TCs.

And, BLISS - they will guide and support you with regards to what you can qualify for, I really recommend them.

My lo is 19 months now and finally walking! Still under 2 specialists, hopefully we'll be weaning her off the meds in Sept - I cannot wait for us to be finally discharged! xx

Tigsteroonie

DLA was going to be my initial suggestion, I have heard good tales of awards being successful on the basis of baby coming home on oxygen. If you get DLA then you can claim an additional disability element to your Tax Credits. If you get award middle-rate care DLA then you could try to claim Carers Allowance (not sure of the rules re income/hours for this).

Ask your local council about whether you now qualify for a Blue Badge on the basis of your child needing bulky medical equipment at all times (the oxygen tanks), again I've heard tales of success on that score.

We struggled with the cost of visiting our little boy in NICU (born at 29 weeks, spent the following 11 weeks on the unit) so we applied for a grant from The Family Fund with the support of the unit's social worker, we worked out how much the transport was costing us per month and claimed for an initial 3 months which was actually just enough.

I remember well what it was like. Even after discharge, we were back at the hospital at least once a month for follow-up appointments; fortunately I found out that we could then claim back the travel costs under the NHS Low Income scheme, so long as I had the patience to queue at the hospital's cash desk. And the prescriptions seemed never ending ...

Still, CONGRATULATIONS!!!! It is indeed all worth it in the end.

VfM4meplse

Bless you! No financial advice to offer, just my congratulations on your new family and I wish you all well.

kingfisherblue

Congratulations, firstly on the birth of your baby and secondly on bringing him home. I would second applying to the Family Fund for financial help in transport costs for appointments. My son is 14 next week and was given four hours to live, and all those years ago we were awarded £300 for this purpose.

You may also want to contact your local carer's centre - thhey can offer you support as well as a benefits check.. Our centre has a parents group that meets monthly, and over a cup of coffee you can exchange information (other parents really are the best source of info, especially something local to you), have a moan, share your worries, or have a laugh - often all in the one afternoon!

Let us know how you get on x

Ellejmorgan

i'm not sure but your health visitor will be your best bet..
surestart won't offer you much as many services are being cut, my health visitor tried to get help for me as i'm disabled and have 3 young kids, she says the only people in a position to help right now are social services..even a wonderful group like homestart have 20 families infront of me on the waiting list, 5 years ago when I had my previous child they didn't have a waiting list, everything is being cut..
As for DLA he won't get anything for mobility as he's under 3 but should get high care..Should be easier to claim for him than it is an adult...

Racheldevon

As a manager for Sure Start i'd hope you're not put off approaching your local service to find out what they are offer you for your particular situation... all centres have to fulfil a 'Core Purpose' and this is the case across the county, with a particular focus on supporting families /children who most need it, including those with additional needs. Services are changing across the country, but you would be eligible to receive a range of support/signposted to local support that might be of use to you.

Mrs_pbradley936

My granddaughter has a few problems physically, mentally she is fine. Anyway her mother was told there was no special help until she was 3 because until then all children special needs or not need 24 hour supervision and help with mobility i.e buggy for shopping or long walks.

Make friends with your HV and heed their advice BUT I hope but the time you baby is 3 you will not require special help. My nephew was born very early he is now 26 and you would never know he almost did not make it.

Mrs_pbradley936

Forgot to say that her mother gets help with fares to Great Ormand Street.