The Children’s Trust, Tadworth and Contact a Family would like to hear from parents and carers of children who spend long periods in hospital. The charities are asking families to fill out a short survey which could provide vital information to strengthen their "Stop the DLA Takeaway" campaign.
Link to survey: https://www.surveymonkey.com/s/StoptheDLATakeaway2012
The Stop the DLA Takeaway campaign highlights that disabled children who spend long periods in hospital are at risk of having their Disability Living Allowance (DLA) suspended. Current regulations mean DLA payments are suspended if a child's hospital stay is more than 84 days. The days do not have to be consecutive, so hundreds of severely disabled and sick children, who are regularly in and out of hospital, could be affected.
The Government argues that when a child spends longer than 84 days in hospital ‘a patient's needs are fully met free of charge'. However, Contact a Family and The Children’s Trust hear from families that they provide the same or more care when their child is in hospital and incur extra costs such as loss of earnings, travel to and from hospital, parking and childcare expenses.
If you are the parent or carer of a child who has spent a long time in hospital you can complete the short survey here: https://www.surveymonkey.com/s/StoptheDLATakeaway2012
This information could help Contact a Family and The Children’s Trust strengthen their call for the Government to scrap the rules that deny some of the UK’s most severely disabled children financial help when they need it most.
Latest information and advice for families
Contact a Family’s latest updated parent guides include:
- A checklist for parents for England, Wales and Scotland - a leaflet to help parents learn about the financial help they may be eligible for.
- A checklist for parents in Northern Ireland - available on the website only.
- Preparing for adult life and transition Northern Ireland - available on the website only.
Parents can order free hard copies of Contact a Family's printed guides by calling our helpline on 0808 808 3555.
She is also an experienced broadcast and print journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media. She is a Rare Disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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