We're a little miffed here at SNJ. You might even describe it as pretty ticked off to say the least.
For more than a year, the focus for us as parent carers has been the root and branch reform of the SEN system in the shape of the Children & Families Bill and the Code of Practice. Definitely enough to keep us all occupied.
As we mentioned last week when we talked about the proposed changes to Legal Aid, we are scouring the CoP and waiting to see what changes to the bill the Lord's amendments will bring.
The Care Bill
Meanwhile, the draft Care & Support Bill has been going through the same passage as the Children and Families Bill and it hasn't escaped our notice that there's some funny business going on. Only it's not at all amusing.
Driven by the Department of Health, the Care Bill has already had its own problems by clumsily "forgetting" young carers.
After lobbying by the Carers Trust, this omission was addressed by the Department for Education amending the Children and Families Bill to include young carers' needs for an assessment. Additionally, the Care Bill now also recognises the need to provide sufficient support to families with young and sibling carers.
But that's not the only group of carers the "Care" Bill missed. Guess who else has been given the DoH cold shoulder? US!
Parent carers, so busy ensuring the Children and Families Bill meets the needs of our children, are apparently not worthy of inclusion in the "Care" Bill.
We have been so focused on this, we have done the thing we all do, far too often: we have forgotten about taking care of ourselves.
The Care Bill does mention Carers' Assessments but carers are defined in the bill as "an adult who provides or intends to provide care for another adult", which clearly does not include the parent carers of children/young people under 18.
Nul points, DoH!
As a young disabled person transitions from child to adult services, a parent carer can request a needs assessment, and a local authority must comply, if it's likely the young person's needs will continue into adulthood. The parent carer then becomes an adult carer and so has the same rights to an assessment as the adult they care for.
Parent carers, meanwhile will still have to request an assessment and be undertaking a ‘substantial and regular’ amount of care to be eligible for any support. So our rights are not the same as those of carers with responsibility for adults.
This is what Earl Howe said in the House of Lords on Oct 9th:
I turn to the position of those with parental responsibilities for disabled children, which is an important issue. However, we do not consider it appropriate to include provisions within the Care Bill about the assessment of parent carers of disabled children, as proposed in Amendments 6, 8, 9 and 35 from the noble Baroness, Lady Pitkeathley. In the Government’s view, the main provision for assessing and supporting those caring for disabled children should be in children’s legislation, so that the family’s need for support can be looked at holistically. In most cases, the best way of supporting a parent carer of a disabled child and other members of the family is by the provision of support directly to the child concerned. It would not be appropriate for adult care and support to be undertaking an assessment of those needs, when adult support is not best placed to meet them. The view of the Minister for Children and Families is that there is already sufficient provision under Section 17 of the Children Act 1989 to provide for the assessment and support of children in need, including disabled children and their parents.
What can you do if you want to say "Hey! What about me?"
Two words: ACT NOW
The Bill is currently at the House of Lords and the Third Reading is this Tuesday - 29 October. The Third Reading is the final opportunity to make amendments to the Bill - so you can still email Earl Howe (Parliamentary Under Secretary - Dept of Health) or any Member of the House of Lords you have contact with. - but you must do it NOW.
To help as it is such short notice, we have adapted an earlier letter from Caroline Lucas MP about the same issue that you can customise with your own details. Last minute plea to Lord Howe. It's a Word Doc. When you have customised it, go here: http://bit.ly/1clanaB which is the They Work For You site where you can message Earl Howe. It may be too late, but at least you will have tried if you have not already taken action. When you have submitted the form there, you then need to verify the link you will be emailed by clicking on it.
And in case anyone who can change anything reads this and is wondering what we're complaining about, I urge you to read Steph Nimmo's post on her Was This In The Plan blog: "Carers, No Time to Complain"
The Health Secretary, Jeremy Hunt is Tania's MP. If things aren't put right, she'll be looking forward to chatting to you, Mr Hunt, at next year's Hale Carnival.
- Parent Carer fight continues: Press release from Carers' UK
- More information from Carer's UK (pdf)
- The Care Bill
- The Written Ministerial Statement from Michael Gove MP on young carers
- Care Bill Factsheets
- Daisy's Angels, Steph Nimmo's Facebook page
- Carers' Rights Day, 29th November
- Last minute plea to Lord Howe [Word doc download]
- Launching “SNJ In Conversation” First episode: Coronavirus and Disabled children’s mental health - May 18, 2020
- Coronavirus: Disabled children’s education rights must be restored now, before any formal return to school - May 14, 2020
- Coronavirus Lockdown with kids: Setting a steady pace for home learning - April 1, 2020