There was an interim budget last week in the UK. Another round of austerity measures, more cuts, more worrying times for those of us, forced through circumstances, to rely heavily on our benefits system.
On the same day as the budget, there was also a glimmer of hope for parents caring for some of the sickest and most complex children in the UK. You probably didn't even notice it, but there was a landmark victory in the Supreme Court. It unanimously ruled that taking away Disability Living Allowance (DLA) from a disabled child after he had been in hospital for more than 84 days is in breach of his human rights and unlawful. This was the first time the Supreme Court has ever found for a claimant in a Social Security Case.
The case in question was brought by the Mathieson family who challenged the Department for Work and Pensions who took away their severely disabled and hospitalised son's disability living allowance after he had been an inpatient for more than 84 days.
Cameron Mathieson has sadly passed away but he has left the most incredible legacy for other children just like him, a legacy that highlights the unfairness of a rule that means that when children need their parents the most, when they are at their sickest and unable to be at home, their financial security is threatened and their parents are put through unbearable stress and hardship as they struggle to care for their child.
The rule, which still exists, states that once a child has been an inpatient for 84 days they do not need the Disability Living Allowance as they are cared for night and day by the NHS. As a result their parents also lose Carers Allowance as they are no longer classed as carers. The Supreme Court ruling showed the complete callousness of this rule. As Cameron's family knows, the reality is so, so different.....
When your child is in hospital, whether or not they have additional needs, you do not leave their side. If your child is so poorly that they are in hospital for 84 days or longer (Daisy once did a 12 month stay), the hospital becomes your home and life as you knew it changes completely.
I have never been able to understand the rationale that once the child is in hospital long term "the NHS is caring for your child" and therefore you do not need financial support to be able to care for them. This is simply not true - Daisy has one to one care, 24 hours a day. These care needs do not change if she is in hospital. The NHS is not resourced to provide one to one care for complex children and ask any paediatric nurse and they will confirm that they rely on the parents to help with the child's care.
When your child's care involves complicated procedures that require a certain level of trained nurse then you are relied on even more. I remember one time, when Daisy was staying at Great Ormond Street I managed to get a room in parent accommodation for a few nights to get some sleep but be nearby in case I was needed. My mobile rang early in the morning to ask me to come over to the ward as they had staff calling in sick and could not cope with managing Daisy's care so I would need to come and do it.
That is the reality. It is definitely not a case of being able to hand your child over and someone will look after them and take on your role 24/7. You need to be with your child to be their advocate, their voice,their nurse and carer while also trying to keep things running at home, especially if, like me there are other siblings.
Costs escalate as you try to manage your hospital life with your sick child and keep life going at home. Where did the rationale come from that you save money when your child is in hospital? Having spent 12 months living on microwave meals, doing my washing in a launderette, trying to pay bills and do online shopping for the rest of family, I know what it is like.
We do everything in our power to keep Daisy out of hospital now, we manage situations at home time after time which would have involved hospital stays a few years ago. When Daisy is in hospital I lose my night nurse packages, with the same rationale that after 84 days I need no financial support, I also lose any homecare support with immediate effect once Daisy is an inpatient, which means I have to spend waking nights with her and try and muddle through the days.
No parent wants their child to be in hospital, parents of complex children live in constant dread of the long, protracted hospital stay. But at least thanks to the legacy left by little Cameron Mathieson we will soon no longer live in fear that if we have to stay in hospital for a long time we will not have our benefits taken away.
The Supreme Court has ruled that taking the current rules are wrong and families should not be burdened with the worry that the longer their child needs to be in hospital, the greater their risk of having their financial lifeline cut. Now it is over to the government to change this rule, please, for children like Cameron and Daisy, let them see sense.
For more info on the work being done by Contact a Family and The Children's Trust to lobby for this change and to sign the petition to show your support of the campaign follow this link http://www.cafamily.org.uk/get-involved/campaigning/stop-the-dla-takeaway-in-hospital/
Websites close to my heart
- Shooting Star Chase (Daisy's Hospice)
- Great Ormond Street Hospital Children's Charity
- Torbay Holiday Helper's Network
- Sick Children's Trust
- Daisy's Angels - Facebook Page
- About Costello Syndrome
- Asperger Syndrome
- Caudwell Children
- Together for Short Lives (Children's Hospices in the UK)
- Costello Syndrome Support Group
- Give Kids The World
- PostPals - Putting Smiles on Sick Children's Faces
- Singing Hands (Daisy is their No1 Fan!)
special needs (85) costello syndrome (43) disability (32) aspergers (19) TPN (18) cancer (18) Great Ormond Street (17) carers (16) parenting (14) autism (10) shooting star chase (9) children's hospice (8) Blogging (6) family (6) SEN (5) hospice (5) Mitrofanoff (4) diagnosis (4) BIBs (3) Britmums (3) Neuropathic Bladder (3) communication (3) holiday (3) benefit cuts (2) david cameron (2) gastroenterology (2) singing hands (2) travel insurance (2) BSL (1) Child Hospice (1) Colectomy (1) antibiotics (1) benefit scrounger (1) bladder (1) france (1) health (1) line infection (1) makaton (1) portage (1) siblings (1) sign language (1) sign supported english (1) ultrasound (1)