Terminally ill baby. What help are they entitled to?

zaxdog

Hi All,

Never posted on the benefits board before but I am hoping you can help me.

A friend's wife had a baby last month who has Edward's Syndrome (she is now living at home but is critically/terminally ill), she is tube fed etc etc. Anyway the mother was working and has had to give up work and they are splitting the care 50/50 as the baby needs constant supervision and care. Husband was working and is on carer's leave but will need to go back to work soon. He is on a low wage and has high (completely unavoidable travel costs).

Any suggestions on what they are/may be entitled to?

Thanks in advance x

xylophone

Working tax credit? http://www.hmrc.gov.uk/taxcredits/start/who-qualifies/workingtaxcredit/work.htm

Child tax credit? http://www.hmrc.gov.uk/taxcredits/start/who-qualifies/children/index.htm

Child benefit

Is mother getting any maternity pay https://www.gov.uk/statutory-maternity-pay?

If they are on a very low income are they entitled to any housing benefit or council tax benefit? http://www.turn2us.org.uk/benefits_search.aspx

http://www.soft.org.uk/

krisskross

DLA for the baby?

superflygal

Oh thats so sad. I hope they get some money to help them. x x

GlasweJen

I'm not sure about "special rules" claims for tiny babies but would the parents be ok with a doctor declaring their child won't make it to 6 months old?

rogerblack

GlasweJen wrote: »

I'm not sure about "special rules" claims for tiny babies but would the parents be ok with a doctor declaring their child won't make it to 6 months old?

There has to be 'a reasonable expectation of death within 6 months'.
But this does not mean over 95%, or even 50%.

You can, for example, have a reasonable expectation of rain on a cloudy day, even though the chances of rain forecast are only 33%

lkmc01

So sorry for the family. To have money worries in their situation must make it unbearable.

pmlindyloo

This might be a useful organisation.

http://www.soft.org.uk/SOFT-Children/Finance-and-Benefits

GlasweJen

rogerblack wrote: »

There has to be 'a reasonable expectation of death within 6 months'.
But this does not mean over 95%, or even 50%.

You can, for example, have a reasonable expectation of rain on a cloudy day, even though the chances of rain forecast are only 33%

I know that but I mean from an emotional perspective would the parents be ok having it on paper that their little one is unlikely to make it.

My consultant (who filled in my DS1500) said he wouldn't sign one unless he had given odds of less than 30% survival at 6 months. I know this varies but doctors won't sign them without reinforcing what they are doing it for, the DWp also make it clear that you're terminal on your award notice. Mine is shredded now but it said "special rules" all over it.

[Deleted User]

That's really bad, I think that they should approach a charity, I'm sure that there will be some help. I know that most of us on here would help if that was required.

I hope that you manage to help them find the money that they need to spend all of their time at home.