Did you miss something Mr Timpson?
You may remember that earlier this year I was part of a delegation of Special Needs Bloggers who met with Edward Timpson, MP - Parliamentary-Under Secretary for Children and Families. We had an opportunity to share with him our personal experiences of life parenting a child with disabilities. He was very engaged and appreciated the time we spent helping him understand the realities of life when you are involved in a more extreme form of parenting. In fact after the meeting I received a lovely note from him which even mentioned some of the points I had made and thanked me for my time as he wanted to ensure that he full understood the challenges parents like myself face.
You can revisit the blog post here http://www.wasthisintheplan.com/2013/03/what-i-told-minister-what-i-would-have.html
We were all there to talk about our experiences, particularly those related to the education of our children and supporting their needs, but what was also blatantly obvious to anyone in the room was the role each of us as parents played in ensuring our child got the support they needed and the care we provided for our children day to day, week in week out - clearly above and beyond the average parenting job description.
Unfortunately it was maybe not so obvious to Mr Timpson.
His department has been working on supporting carers through new legislation and the Care Bill will provide new rights for adults caring for adults and the Children & Families Bill will recognise the role of young carers (like my children) - but there is a glaring omission. Nowhere is there provision to protect the rights and support Parent Carers. This will mean that my children will have more rights as Young Carers than I will in securing the support and services I need for my child.
Do I need to spell it out? What I do to keep Daisy alive is above and beyond what is considered a "normal" parenting role. I would love to be just mum to Daisy but that is clearly not possible. And the work I do - advocating for her, managing her medical care, ordering all meds, taking her to appointments, sitting up all night with her, living with her during long hospital admissions....you know the stuff, the list is endless....this is all above and beyond the standard mother stuff. I just can't understand why Parent Carers do not have equal rights to Young Carers or Carers of Adults?
Dd you know that for some obscure reason the bureaucratic powers that be in Whitehall believe that once your child is a hospital inpatient they are cared for 24/7 by the NHS and you can sit back and relax (believe me, they really do think this so after so many weeks Carers Allowance is cut!)? I wonder if these same bureaucrats believe that it's just part of the job of parenting and we shouldn't have any additional rights?
I thought Mr Timpson was a man of integrity when I met him - I hope that completely missing the elephant in the room was a genuine error on his part and not a calculated move.
So what can we do? If you live in the UK please write to your MP, especially if you are a parent carer - tell them what you do and why your role needs to be enshrined in law. Write to Edward Timpson, ask him to include the role of Parent Carer in the Children and Families Bill.
Time is running out to put this right, please don't leave it until it's too late!
You can find brilliant template letters to use on the Carers UK website here http://www.carersuk.org/get-involved/equal-rights-for-parent-carers
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)