Author Topic: re short breaks for profound disability children  (Read 15384 times)

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Offline jol

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re short breaks for profound disability children
« on: February 28, 2010, 09:47:47 PM »
from page 1 & 2 Short_Break_FAQS_May_2009 TDC Together for Disabled Children (link at bottom to download)

Q. What are Aiming High for Disabled Children and the short breaks
In Aiming High for Disabled Children: better support for families (AHDC -
DfES/HMT, May 2007) the Government announced a range of measures to
transform services for disabled children and their families. The resulting
AHDC change programme is designed to ensure effective delivery of child
centred services.  
The measures include a core offer, which sets out national expectations about
families’ relationship with services, and a national indicator capturing parents’
experience of services in relation to the core offer components.  
AHDC also announced a number of significant investments in key service
areas. These include a £35m childcare accessibility project to improve access
to childcare for disabled children, a £19m Transition Support Programme to
support service improvements that will promote disabled young people’s
transition to adulthood, and £5m for supporting parents’ forums throughout
The largest investment however, is for the transformation of short break
services and DCSF has allocated £269m of revenue funding for local
authorities over the 2008-11 Comprehensive Spending Review period for this
purpose. To enable PCT’s to work with local authorities to significantly
increase the range and number of short breaks new growth funding has also
been included in PCT baseline allocations.  
The DCSF also published the Children’s Plan in December 2007, which set
out the provision of £90m for capital projects supporting short break provision.  
Q. What is the short break funding for?
The funding is to transform short break provision for severely disabled
children and their families.  We want families to have access to a modern
range of services that meets their needs.  This will mean local statutory
partners recognising their combined short break provision to be a joint
service, and planning and delivering on improvements that will see an
increase in quality provision and beneficiaries that is in keeping with the major
new funding available.  It will also mean most areas expanding the types of
short break service available so as to be able to offer a more personalised,
flexible service that is well designed and orientated around the families needs.  
Finally, transformation will mean breaks for those eligible children and families
currently unable to access suitable provision.  

Local areas are expected to work in a way which has a dual focus.  They are
expected to build their short break provision in specialist settings, such as
residential centres, carers’ homes in the child’s own home - concentrating
especially on groups of children who have previously remained on lists of
unmet needs or have only had limited range of options to choose from, for
example, disabled children with moving and handling needs; disabled children
on the autistic spectrum with additional impairments or older disabled
children. Local partners are also expected to work with staff and volunteers in
mainstream and universal settings to build their capacity to accommodate
disabled children in receipt of short break provision,

The Government has set out a short break Full Service Offer (FSO) in the
implementation guidance which it expects all local areas to be providing by
April 2011.  
Q. How do short breaks link to the core offer and the indicator (NI54)?
The core offer describes the expected relationship between providers of
disabled children’s services and disabled children’s families. In providing short
break services, local authorities and PCTs are expected to ensure that
services which are commissioned both internally and externally are developed
in accordance with these standards.
The indicator will be based on parent satisfaction data.  We know that short
breaks are very important to parents of disabled children. Satisfaction with
short breaks services will therefore be an important driver in shaping
responses to the indicator.   The measurement of satisfaction is based on the
elements of the core offer;dl=item10

there are county stakeholder/short break meetings which Parents are welcome to attend -- dates in Calendar (top Menu) with linking info

cumbria county council short breaks forum info here
« Last Edit: March 18, 2010, 01:02:19 PM by jol »

Offline jol

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Re: re short breaks
« Reply #1 on: March 02, 2010, 05:37:14 PM »
ok finding some stuff here and there  and hope to post a good letter attached to our minutes soon (just waiting for permission)

there is a county report on transforming short breaks - no date or author but it is from the news section of CCC ( so i assume it is fairly recent - attached below

also if any of the parents who have attended any of the stakeholder meets could perhaps give us a report of what they found out that would be great -- get posting (or i'll chase you up!)
« Last Edit: March 02, 2010, 05:39:37 PM by jol »

Offline jol

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« Last Edit: March 18, 2010, 10:48:07 AM by jol »

Offline jol

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Re: re short breaks -open letter
« Reply #3 on: March 18, 2010, 10:57:46 AM »
ok as it is an open letter we now have permission to include the text here

"Dear parents and colleagues

Thankyou for your involvement in the first phase of these locality stakeholder groups of short breaks, and welcome if you have not been involved before.

The first phase was led by Action for Children on behalf of the County Council and the work that took place in the groups was used in the development of the Commissioning Framework, and the Delivery plan for the extra funding that will be received next year. The Commissioning Framework explains what needs to happen over the next few years, and the delivery plan says how we will use the money next year to work towards that. Both were approved by the County Council Cabinet in January this year.

In addition -

•   We have already tendered for organisations to provide group holiday, weekend and after school activities, and for individual support for young children. 4 parents were involved in evaluating the bid that came in – the new activities should start after April.

•   We are in the process of recruiting short breaks inclusion workers in each locality to work with you all to increase the access to mainstream activities.

•   We are developing our family based overnight care service  to include a pilot of specialist carers for specific groups of children.

•   We are planning to work with child minders to increase their involvement, availability and skills to provide short breaks as well as child care.

•   We have a workforce plan in development to ensure that we will have a sufficient and skilled workforce available in the long term. We are also planning a marketing campaign to improve the awareness of the opportunities to become a short breaks carer.

•   We have also developed an eligibility criteria for the new services, but still need to agree the exact processes and level of assessments needed.

•   We have disability champions on all the Local Planning Groups of the Children’s Trust Board.

•   Children and Young People form Mayfield School have worked with an arts group and film project to make a DVD called ‘’’Give us a break…..’ that will be used to promote what they want to do.

•   Some of the capital funds have been given to local areas to use – with very different ideas from each area.

•   A plan to use the rest of the capital funds is currently being developed.

There has been a lot of progress and a lot of work from everyone to achieve this .  

BUT  ........

If we are really going to transform services and to prepare for April 2011 when the funding stops, we have to closely monitor the impact of the new services and the training and systems, to ensure that we are really making a difference, and where we aren’t – decide what to do and what to change.

From April 2011 – the government will make it a duty for local authorities to provide short breaks and are currently consulting on what this should look like. However, they will no longer ‘ringfence’ money to provide them.

We are all aware of the national financial situation and that whatever political party wins the election, there will be cutbacks in spending. We need to be in a position to show that we have made a difference and that any money that is provided has been used effectively. We want to be in a position to decide what services are a priority to continue if there is less money available.

This is where you come in ---

the next phase of stakeholder groups will need to bring together those who can influence and support inclusion; providers, practitioners and parents to monitor the overall provision, identify potential gaps and where services are not really meeting needs, are not making a difference.  You will need to help the inclusion worker to identify where there has been good practice, and where there needs to be more intensive support.

We may be collecting ‘hard’ data an how many hours and how many children are using them, but you will be in a better position to collect the ‘soft; data on what difference it is making. We will ask you to consider the best way to gain that information locally – especially to find those parents who do not come to groups, and who may have the most difficulties and need for service.

You will also be a link through the disability champions to the Local Planning Groups to ensure that the needs of disabled children are considered in any local initiatives - e.g. play provision.

Each stakeholder group will be led by the most appropriate people in each locality, and will link to the County Short Breaks project group. We do need to ensure a consistent approach – but each group can choose to develop other activities as they choose.

The groups will meet every other month and the dates will be set out well in advance so you can get them in your diaries.

If we can get this right than    Together we can…. Aim High for Disabled children.

Yours sincerely

Joan Lightfoot
Commissioning Manager
Inclusive Services for Children and Young People with Learning Difficulties and/or Disabilities

Together we can achieve the best for every child, young person and their family in Cumbria.

« Last Edit: March 18, 2010, 02:26:12 PM by jol »

Offline jol

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Re: re short breaks - emergency respite
« Reply #4 on: March 18, 2010, 11:03:17 AM »
while requesting permission to post the above letter, i took the opportunity to ask a couple of questions...
i include the letter here.. and will post responses as we get them...
Joan Lightfoot  - commissioning manager , inclusive services for children/young adults with learning difficulties and/or disabilities


I am Jolyon Wardle and I am involved with the learning to change in Cumbria  group and have put up a Learning to Change in Cumbria Website

I am writing to ask you if i may post your letter dated 11 February 2010, which was attached to our minutes from the steering group meeting 8 feb 2010

I am just 'populating' an area of the site specific to short breaks, and asked John Parnaby at the steering group meeting this monday march 1, to be sent details of any stakeholder meetings which parents could attend, which he said he could.

I am just getting up to speed on these issues so please forgive and/or correct me as necessary, but I felt your letter was a good indication of 'changes being made' and of changes under development, together with appropriate warnings as to future fundings and directions..

I had found a Transforming Short Breaks- County Report

From your page Aiming high area of the CCC site ( but it is not as accessible as your letter!  (also i note it has no date or authorship)

If possible could you send me the letter in .doc or pdf format, or do feel free to register and post in the forum on the site....

I should be grateful for your help and i wonder if i may take this opportunity to ask you a couple of things

1/ Firstly we are trying to get a list of what facilities actually exist in county -- please see


and 2/
one of the reasons why my partner Val and i became involved in the learning to change initiative in the first place, -- emergency respite or short breaks as i believe i must now call it..( )

we didn't want  anyone to be in the situation we went through 5 years ago, where an impending family implosion - we had 2 profoundly disabled twins - not yet  fully pain managed - one severe and not sleeping-- the system worked well when a group of professionals and key people came to our house, 7 or 8 including all medical consultants and social care - excellent - they knew that we needed a break - we are both medically trained and had gone as far as we could, anyhow we agreed, but where were the children to go or at least the most disabled twin? and this is the important bit -- the only place he could go, was the children's ward in Lancaster Hospital, which was difficult for the staff there, and for Matthew, but had to be done for a week.

My question is -- is there any facilities here in Cumbria 5 years on? and more importantly is there any dialogue with adjoining counties, who maybe have capacity from time to time?

An arrangement such as that would allow for savings* - as a unit would not necessarily have to be built/ maintained in county, which in the current climate, is most unlikely. A short break out of county is a feasible budget savvy approach, which could continue long after this aiming high money is gone, and would be a good legacy and fits the remit of the short break initiative pages 1 & 2 cited here  from the TDC

Many thanks and apologies for hitting you with this.

Your work and letter is appreciated.

* we argued similarly and successfully when we gained an out of county 24 hour schooling for Matthew some years ago  - which although expensive for the county is considerably cheaper than an in-county build and maintain -- also i wonder if funding for an out of county short break for the severely disabled, could be jointly funded by the Health Trust --

Thank you for your time.

Jolyon Wardle

Welcome to Change in Cumbria for Disabled Children and Young People

A Parents' Site for Learning to Change Cumbria, who are working alongside the Local Authority with the support of Contact a Family to help bring change to the way services are accessed and improved..part of the Parent/Professional implementation, under the "Aiming High for Disabled Children (AHDC)- Every Child Matters" Government initiative

Using the site
to get the best from the site - register! , then when you return you can choose "unread posts since your last visit" from the top right hand of the Front page

use the Search Help and Calendar on the top Menu -- look around - get posting and by all means ask for help if you need it -

« Last Edit: September 06, 2010, 08:09:59 AM by jol »

Offline jol

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Re: re short breaks for profound disability children
« Reply #5 on: September 14, 2010, 12:29:08 PM »
re the next conference IV at Kendal, we asked...

"we wonder though whether anyone from the PCT will be attending and whether they would be able to tell us how their allocation has been spent, and if funding continues, what future plans they have .

we understand their funding is not ring fenced but believe there is a requirement for some sort of audit?

also we would still like to know what provision is being made for "emergency respite"

as the facilities at present cannot accommodate children with physical disabilities or more complex medical needs

we want to know what would happen if a family with a child with, for example, cerebral palsy, epilespy and a gastrostomy/feeding tube  phoned SLDC social services saying they were at breaking point and could not look after their child any longer.  Or, if such a family had an emergency, eg the principle carer was suddenly taken into hospital, or had to be away from the family home for a time?

we wonder why a part of the PCT / aiming high funding cannot be set aside for a reciprocal respite arrangement with ajoining counties, who have the appropriate residential facilities and, who might have availability...

Many thanks

val and jol


"Invites to professionals including those from the PCT have been sent out and
we are currently awaiting confirmation of who will be attending.  The
question about Aiming High Funding was raised within the Parking Lot at the
last conference.  The response received from the PCT was included within the
report as follows:

Q         Could the PCT let us know how they have spent the budget allocated
to them from the Aiming High budget?

The Department of Health does not break down primary care trust allocations
or 'ring fence' funding.  Instead, decisions about funding for health
services are taken locally by leading GPs representing each part of Cumbria.
It is therefore not possible to disaggregate NHS Cumbria investment in a way
which apportions a specific monetary benefit to the range of health services
which support children with disabilities.
However NHS Cumbria fully supports the Aiming high agenda and invests in a
range of services for children with disabilities including MENCAP, community
children's nursing teams, residential respite, hospice services and improved
health services closer to home which benefit all families.

The Parking Lot will be available again at this next conference where your
question about what would happen in an emergency can be raised.  

The agenda for the day has yet to be finalised but will include some
opportunities for table discussions too.

Best wishes

kendal Conference Learning to Change IV is on Oct 11from 10.00 a.m. to 2.00 p.m. (refreshments and registration from 9.30 a.m.) at the

Castle Green Hotel in Kendal.

details on attached flyer......
« Last Edit: September 14, 2010, 12:31:41 PM by jol »


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