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

kingfisherblue

Mrs_pbradley936 wrote: »

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.

DLA can be awarded from three months old if a child has more needs than another child of the same age. Yes, they still need supervision, but DLA is not just about supervision, the care component is about care needs.

My son was awarded high rate care at three months (the earliest age possible) because he was tube fed and on numerous medications. He also choked frequently and needed additional supervision because his windpipe was in danger of collapsing. This meant that I had to be up frequently during the night, much more frequently than just feeding a newborn. Even now, I am up caring for my son every night - at least four times, and he is 14 next week.

Other care needs that a child under three might have are being on oxygen, feeding very slowly or falling asleep when feeding (both common in babies with Down's syndrome), having a tracheotomy, needing additional help with communication because of deafness or blindness.

Your grandaughter's parents were misinformed as the help is there for those who need it. It isn't easy to get; as you say, all babies need supervision, but it is possible. Maybe they were told that there was no extra help if your grandaughter has mobility needs alone, in which case there is no additional financial help until age three (for high rate mobility) or age five (for low rate mobility).

Also, health visitors are not trained in the benefits system and may not know what is available.

Mrs_pbradley936

kingfisherblue wrote: »

DLA can be awarded from three months old if a child has more needs than another child of the same age. Yes, they still need supervision, but DLA is not just about supervision, the care component is about care needs.

My son was awarded high rate care at three months (the earliest age possible) because he was tube fed and on numerous medications. He also choked frequently and needed additional supervision because his windpipe was in danger of collapsing. This meant that I had to be up frequently during the night, much more frequently than just feeding a newborn. Even now, I am up caring for my son every night - at least four times, and he is 14 next week.

Other care needs that a child under three might have are being on oxygen, feeding very slowly or falling asleep when feeding (both common in babies with Down's syndrome), having a tracheotomy, needing additional help with communication because of deafness or blindness.

Your grandaughter's parents were misinformed as the help is there for those who need it. It isn't easy to get; as you say, all babies need supervision, but it is possible. Maybe they were told that there was no extra help if your granddaughter has mobility needs alone, in which case there is no additional financial help until age three (for high rate mobility) or age five (for low rate mobility).

Also, health visitors are not trained in the benefits system and may not know what is available.

Thank you for the info. My granddaughter was able to feed and was not on oxygen so the advice was right in her case. I am glad help is there for special cases.

janninew

Hi Op,

I could have written that post myself! Your situation is identical to mine! My baby was also born in November at 26 weeks gestation and spent 13 weeks in the SCBU. She was discharged on oxygen last month and still requires it 24 hours a day. She has a large PDA and requires lots of medication (9 different types a day). I applied for DLA and received the highest rate of care after only 2 weeks. Me and my husband spent over 7 hours filling out the application form - make sure you detail everything. My Daughter is under the care of the Dietician for failure to thrive, the Cardiologist, the ENT Specialist and sees the Consultant Paed twice a month. I put all this information on the form.

I had no idea there was help for travel costs when you are at the hospital!

Good luck with your application and congratulations! My little girl has just started to smile and looking at her makes it all worth while!

x

wiccanlou

I think you can apply for a blue badge for your baby for your car as you have to carry medical equipment for your baby, definitely worth checking with your local council about that as your hospital might be like mine and waive parking fees for those with blue badges.