Respite Care for Disabled Children

[KateMumsnet]

You might have clocked that we recently joined up with Every Disabled Child Matters to urge local authorities to tell us how much money they will be spending on short breaks for families with disabled children in 2010/11.

Since then, we've been in touch with the main charities that work with disabled children, and we're thrilled that so far Scope, Action For Children, Mencap, Sense and Treehouse (the national charity for autism education) have pledged to support the campaign.

We'll be posting up their messages of support on the Respite Campaign page over the next few days, and we'll let you know as other organisations come on board.

If you haven't yet emailed your local authority, now's your chance! It only takes a minute, we promise.

herbietea - I wonder if in your case you could ask for an assessment to see if you would be entitled to any respite and then see if you can get a direct payment in lieu of the respite? Then you may be able to use the money to give your children a break (like paying an agency to come in and do some cleaning for instance).

If there is local young carers or carers organisation they might be able to assist you.

Local authorities have to assess people but they can still set thier own criteria about what they actually provide, and the economy being the way it is, the criteria will be pretty strict. So an assessment saying someone needed help with housework would be meaningless if local authority does not actually provide this as a service.

However an assessment saying your children need respite from the caring role might be more likely to get you somewhere, which is why you should get yourself assessed under adult services and them assessed as carers. Then find out if you can get it a direct payment. Hope this makes sense.

See this in the Sunday Herald today - refers to Scotland only.

Families with severely disabled children could benefit from an extra £2 million to fund short breaks.

The money is in addition to £5 million already allocated over five years, the Scottish Government said.

Public health minister Shona Robison said: "Parents looking after children with complex or exceptional needs have exceptionally tough demands placed upon them. Severely disabled children can be entirely reliant on their parents for everything and families can be left utterly exhausted. Providing a short break - either for parents and their other children or for the whole family - can make a huge difference in sustaining families and keeping them going."

The new funding aims to prioritise children with complex and exceptional needs and their families. It follows a recommendation from the National Review of Services for Disabled Children.

The funding is for the financial year 2011-12 and will be allocated to the voluntary sector, with groups invited to come forward with proposals.

The review report includes a range of measures to improve the lives of disabled children and their families, the Government said.

I'm sorry but the Norfolk County council do not give a hoot about disabled children and respite care. We got a letter today informing us that NORFOLK COUNTY COUNCIL HAD PULLED FUNDING FROM ASPERGERS EAST ANGLIA RESPITE CARE SHRT BREAKS CAUSEING IT TO BE STOPPED FOR THE END OF HIS MONTH.
Below is my letter I have begun to send out to mp's today.
Dear (mp namee)
I am contacting you with great urgency. I have just receive a letter this morning and and quite dismayed and upset but its contents. My letter was a very apologetic one from Aspergers East Anglia who provide much need respite care for my 12 year old son Jack. Jack is a bright lad who has mixed neurodevelopmental problems which include Aspergers syndrome, tourettes, ADHD and mild dyspraxia. Our family have been alone in our care for Jack and his fight for his education and last year we, as a family hit crisis point where our other children and ourselves were not coping with the stresses of Jack and his condition and our family was at breaking point.. We were put in contact with Aspergers East Anglia by a local parent partnership lady. Aspergers east Anglia assess our family and it was decided that Jack would be able to go to respite care through the Aspergers East Anglia charity. In September the charity were informed by the county council that they had been successful for a bid for their short break care (respite) project. However on the 3rd March 2011 the charity was informed that the county council had retracted their offer and funding will stop on the 31st March 2011.
They gave the reasons in the letter as below:
a) The county council's decision to increase its threshold for social care services from substantial to critical
b) the tightened resorce allocation for short breaks services from the early intervention grant

This news of the vital respite care is devastating news for our family and also many families like my own who use this support service. The council hasn't even given the carers and children time to speak and discuss why and what has happened, let alone time to say goodbye. For children like ours this will set them back so much. It is devastating also to these children whose sibling are also supported by the respite system. In my own family, it was ourselves but also the sibling who had hit crisis point. I have no idea how they are going to take the news that respite is going to stop. I'm dreading telling them as I know they too will be devastated. I truly believe that if we hadn't got support for Aspergers East Anglia's respite care, our family would not be together right now. Their vital support has kept our crisis overspilling and has given us a glimmer of hope and a way forwards to coping with living with a demanding child with Aspergers Syndrome. The council has not even considered any alternative supporting respite for our families. The well trained carers who give up their own family time to help our families have been left in the lurch, not knowing whats happening.
I appeal to your self and the government to review this devastating back turn of promises from this government and its members. The prime minister said, "We are in this together"....really, because we feel that we have been abandoned first with his new SEN school project and funding cuts there. Also now with our Respite care support being abandoned by this government. Please could you take up our cause and forward our letter of appeal to whoever may be able to help. This is an urgent appeal as our children and our families will be affected the county councils decision for months ahead.
yours sincerely
Mrs Caroline Dawson

They don't care about families like ours and have no idea about our children. They just cut the funding and leave well trained carers and our families on our own with no support....please write to your mps and ask for their support and get them to reverse their decision.thanks Stressedok

Very sorry to hear that, stressedok. We will forward your message to our campaign partners at EDCM.

There's an update on the respite campaign on this thread.

Thanks,

MNHQ x

Hi Mumsnet followers.

I am new to this site and have become familiar with it through the publicity of Riven Vincent's case on the news.

My name is Laura and I am a third year student at Salford University studying television and radio and for my final year project I am making a 15 minute documentary on 'Who Cares for the Carers'. The aim of my documentary is to look at what current help there is available to families looking after disabled children and how might it be improved, mainly in reference to respite care or short breaks to provide the much needed support.

I am focusing on a case study of Alex Bell - an adoptive parent of 8 children who have a range of disabilities and examining the need for places that she can take the children to share the workload for a few days a year and help enrich their lives through a variety of activities associated with short breaks.

I am also in contact with EDCM to look at the issue of local authority funding and look at how the proposed £800 million is realistically going to help families with disabled children especially if it is not ring-fenced as well as speaking to my LA to find out their intentions.

I am looking for another family ideally based in the Manchester area or within an hours driving distance, who would be willing to share their experiences and highlight the need for support from their local authority especially in the form of respite care but also in terms of improving childcare in general.

I would be looking to interview a family member who could give me their story and also take a glimpse of an average day by filming the parent or carer looking after the child within their routine. This would not take much longer than a few hours and I would be ever so grateful to get another personal experience point of view.

Should anyone having read this feel they would like to know more about my project or be interested in participating you can contact me on [email protected]

Many thanks for listening and my best wishes are sent to you all.
Kindest Regards
Laura