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"A voice for families of children and young people with special educational needs and/or disabilities"  
 

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FAMILY FUND

Family Fund is the UK’s largest charity providing grants for families raising disabled or seriously ill children and young people. Last year, we provided 88,407 grants and services worth over £33 million to families across the UK.

Our grants help break down some of the many barriers faced by families raising a disabled or seriously ill child, and cover a variety of things that may be of benefit, such as household items, family breaks and specialist equipment.

Find out more at www.familyfund.org.uk, call us on 01904 550055, email us at info@familyfund.org.uk or join the conversation on Facebook, Twitter or Instagram.


SEND Local Offer needs your feedback…

We need your help!

Dear Parent Carer
We need your help! Please could you spare a few minutes to complete our SEND Local Offer Survey, your help is appreciated.
It’s that time of the year again! SEND Local Offer needs your feedback…..
Let us know what you like, what you want improved, or just keep as it is!


This will help us further improve the information, accessibility, usage and will assist us in

developing and improving the SEND Local Offer working in partnership with parent carers, children, young people and practitioners.

Please spare a few minutes to complete this short survey www.reading.gov.uk/SENDlocaloffersurvey

Survey end on Monday 10th December 2018, the results will be published on the SEND Local Offer.

Thank you in advance for taking the time to complete the survey.


Minutes of AGM 18 Sept 2018 at Krazy Play Days

MINUTES of AGM 18 Sept 18 - pdf
RFF ACCOUNTS 2017-18- pdf


Study in the UK

https://www.studying-in-uk.org/studying-in-uk-as-a-student-with-disabilities/

Check this link for everything that disabled students need to know about studying in the UK, Universities, they rights as disabled students and scholarships and loans


Adult Care

We will all know someone who needs, or has accessed social care. Please help spread the word about this consultation, to help shape services for the future.

The Local Government Association (LGA) have launched a consultation on the future of adult social care and would welcome views from members of the public and professionals.

More information on how to take part please see the details on Reading Voluntary Action’s website: http://rva.org.uk/article/the-lives-we-want-to-lead-green-paper-for-adult-social-care-and-wellbeing/

Or click here this direct link https://futureofadultsocialcare.co.uk/the-green-paper/


Study on Transition from Primary to Secondary for Children with Neurodevelopmental Conditions

Your contribution to this research would be truly valued and appreciated. Here is a link to Info published online: http://www.jovanherwegen.co.uk/index.php?cID=118


SEND LOCAL OFFER

Information on services and support for children and young people with special educational needs and disabilities (SEND) and their families.

What is the Local Offer?
The Local Offer website (www.reading.gov.uk/sendlocaloffer) provides information on services and support in Reading for children and young people (aged 0 – 25) with special educational needs and disabilities (SEND), their families and carers. It is also a useful resource for professionals and service providers.

Why is it important?
The Local Offer gives children and young people with SEND and their families information that enables them to access services and support which best match their individual needs and personal situation.

What information is available?
• details of early years settings, schools and further education colleges
• local health services and provision for social care
• information on local special needs support
• guidance and services to assist in preparing children and young people for adulthood, including pathways to employment
• information on carers advice and support
• special needs activities and Short Breaks
• information on transport options

There are also advice and guidance pages, service listings and an interactive calendar of activities and events.

Contact
TYel: 0118 937 3777 (option 2)
email: localoffer@reading.gov.uk
www.reading.gov.uk/sendlocaloffer
facebook: @ReadingLocalOfferFacebook

Local Offer pdf


SCHOOL TRANSPORT SURVEY RESULTS 2017

Introduction

Following concerns raised by parent carers across Berkshire, REACH Wokingham, Reading Families Forum and West Berkshire Parent Voice compiled a survey for parent carers about School Transport. The survey was sent out in June 2017 and ran until September 30th 2017 enabling us to capture results at the end of the summer term and beginning of the autumn term.

In total there were 149 responses, 110 from Wokingham borough residents, 29 from Reading borough and 10 from West Berkshire. The following results are from Reading Borough parent carers.
Please note that all responses are anonymised and percentages are rounded to the nearest 5 per cent due to their being just 29 respondents.

The parents’ children ranged between pre-schoolers to over 18s, with most being between 11 and 16 years old. Most children had a diagnosis of ASD or learning difficulties but there were also children with mental ill-health and children with a hearing impairment.
There were children in mainstream schools, resource units and special schools using taxis with and without escorts and minibuses/school buses with escorts.

63% of the children had no preparation before the start of their transport and a further 19% of parents had a phone call about their child. Just 6% of children had met the driver/escort.

Of the 16 parents who answered a question about this, all of their children had journeys of under an hour.

Satisfaction with the driver was very varied. 90% of parents were happy or very happy with their child’s escort however.

Just 40% had concerns about the behaviour of other children on the bus. A third had not told anyone about their concerns. Of those that did, all were happy with how things were resolved.

No parents raised concerns about the behaviour of the escort or driver.

Summary and Conclusions

Most Reading parents who responded are happy with their child’s escort and all the children had journeys of less than an hour. There were no reported concerns about the behaviour of the driver or escort and concerns about the behaviour of other children was dealt with to the parents’ satisfaction. However, many had not expressed their concerns and are should be encouraged to do so.

Just 2 children had met their driver/escort before starting and most were totally unprepared (despite many changes for one child). RBC are already aware of a similar incident and have taken steps to ensure that parents are asked what preparation their child needs before transport starts.

Reading Families’ Forum
10/12/17
RB


SEND Local Offer-Disc

Dear Colleague,

We would like to gather feedback from parent carers, children and young people about the SEND Local Offer-Disc.

This will help us further improve the information, accessibility, usage and will assist us in developing and improving the SEND Local Offer-Disc working in partnership with families and young people.

Please use the link below to take part in the survey. Your feedback and input is greatly appreciated, and we thank you in advance for taking the time to complete the survey.

Link to SEND Local Offer-Disc Survey - https://consult.reading.gov.uk/children-education-early-help-services/local-offer-survey-2017-2018/

Best Wishes,

Maryam Makki & Gill Seagrove



READING FAMILIES’ FORUM COFFEE EVENING
25th MAY 2017

A huge thank you to Mary-Jane Stroud of the Autism Assessment team at CAMHS (Child and Adolescent Mental Health Service) and Jane Stanford-Beale Chief Executive of Autism Berkshire who met with 18 parent carers at our coffee evening last week.

Lots of changes are happening! CAMHS has merged with the children and young peoples’ integrated therapy team. They are now the Child, Young People and Families’ Healthhub 0300 365 1234
https://www.berkshirehealthcare.nhs.uk/ic/the-health-hub/

There is now one referral point for children needing CAMHS, occupational therapy, physiotherapy and/or speech and language therapy. This means that, if needed, your child could be seen by several therapists at the same appointment.

CAMHS works with children 0- 17½ who have moderate to severe difficulties making a significant impact on their lives. If your child is older, they will be seen by the adult neuropsychology team, Erleigh Road Clinic, 25 Erleigh Road, Reading.

CAMHS has an Autism Assessment team, an Attention Deficit Hyperactivity Disorder (ADHD) assessment team and an anxiety and depression team. There is also a community eating disorder service, an emerging psychosis team and an emergency response service which is available from 8am to 9pm. In an emergency, phone the Health Hub above for help. (Outside of these hours, you will be directed to the adult team but there are child psychiatrists on call.)

The waiting times for an autism assessment at CAMHS is about 18 – 20 months, There are 4 members of staff on maternity leave but some staff are working evenings and weekends to reduce the waiting times! Mary-Jane will check the waiting times for an ADHD assessment. CAMHS are now offering monthly joint assessments for children who may have Autism and ADHD.

CAMHS encourage schools to make referrals if parents are worried about their child, even if the school is not concerned themselves. They also encourage schools to start support while the child is on the waiting list – support should be needs led not diagnosis led! When you are referred to CAMHS you should have a letter about this to take to school. If not, ask for one!

When under 5s are assessed for Autism, they will be seen by a paediatrician if they have not already seen one. During the appointment, under 5s will be assessed by a speech and language therapist while in the same room as their parent(s). Have a look at this video to find out what to expect at an appointment with an older child:

http://servicesguide.reading.gov.uk/kb5/reading/directory/advice.page?id=a9P_AjL-R7w

Mary- Jane encouraged families to contact CAMHS if they had any questions following reports on their child.

SHaRON Jupiter (Support, Hope and Resources Online) is an autism network moderated by clinicians. Autism Berkshire and Jenna Redmond, the Autism Advisor for Reading Borough Council, are involved too. Families with children who are diagnosed or on the waiting list for an assessment can ask questions, give information or just off-load! An electronic referral form can be requested from sharon.jupiter@berkshire.nhs.uk

While there have been a lot of positive developments above, parent carers were concerned about ongoing support for children with autism. One child had been referred back to CAMHS by their GP (with supporting information from school) but CAMHS had turned down the referral almost immediately. The Clinical Commissioning Group don’t fund CAMHS to do ongoing support work with children with autism unless there is also a mental health diagnosis.

Jane Stanford-Beale from Autism Berkshire outlined the support available for families while they wait for an assessment and after diagnosis. See http://www.autismberkshire.org.uk/ for details.

Our next Forum event will be a talk from SIBS on 5th July advising on how to support brothers and sisters of children with any type of disability and/or special needed. Hope to see you there!
 


Minutes of AGM 28 Nov 2017 at Krazy Play Days

MINUTES of AGM 28 Nov 17 - pdf
CHAIR’S REPORT 2017- pdf
RFF ACCOUNTS 2016-17- pdf


SEND YOUTH PARTICIPATION GROUP

We are inviting young people with special needs and/or disabilities to become part of a youth participation group
to give you opportunities to give feedback and opinions on services provided for you.

Further information here - Youth participation flyer.pdf


Videos

   
Impact on Families   Looking for Answers   Short Breaks



Welcome to the latest edition of Contact a Family’s What's new e-publication. If you know someone who might find this free monthly e-newsletter useful, let them know they can simply sign up to receive regular copies straight to their inbox.

And remember, if you care for a disabled child and need advice, support or information, please call Contact a Family’s free helpline on 0808 808 3555 to talk to one of our expert advisers.

Contact a Family calls for compensation fund for families with disabled children who have missed out on tax credit extra payments
Last week the Chancellor Philip Hammond set out the government’s plans for the economy in his Autumn Statement. In it we learned that the Department for Work and Pensions (DWP) and HM Revenue and Customs (HMRC) have identified 28,000 families with a child in receipt of Disability Living Allowance (DLA) but who are not getting the disabled child element(s) paid with their child tax credit. For these families, their awards will be amended and the extra amount paid from April 2016. Some of the families should have been getting extra awards for several years so have missed out on up to £20,000.

Contact a Family featured in the Guardian and Daily Mirror over the weekend about this. We are calling for a compensation fund for families with disabled children who have missed out on tax credits due to a government administrative issue. We urge families to make sure they tell the Tax Credit Office as soon as an award of DLA is made or an existing award is increased so they don’t miss out. You can read more here.

Benefits of earnings limit increase for Carers Allowance cancelled out by rise in National Living Wage
The earnings limit for Carer’s Allowance will be increased to only £116 per week from April 2017. While this maybe be good news for some carers, for others who work 16 hours or more per week, the increase will be of little or no benefit. This is because the National Living Wage will also be increased to £7.50 per hour from April 2017. So, from April, if you work 16 hours per week, at the National Living Wage rate, your earnings will be £120 - and as a result you will not qualify for Carer’s Allowance. Read more about it and find out why we will continue to campaign for the government to either raise or scrap the earnings limit for Carer’s Allowance altogether.

More about Carer's Allowance
You can find out more about Carer’s Allowance by downloading our Carer's Allowance summary factsheet [PDF] or reading our guide on how to get a carer's needs assessment.

More Universal Credit roll outs this autumn
This autumn the full Universal Credit 'digital service' is being extended to a number of new postcodes. Anyone of working age - including a parent with a disabled child - who lives in these areas and who makes a new claim for one of the means-tested benefits that Universal Credit is replacing will be asked to claim Universal Credit instead.

Find out which areas are affected by this or take a look at the new postcode checker to see if you can claim Universal Credit in your area. Visit our Universal Credit webpage to find out more about the digital service, how it might affect your family, and the timetable for its roll-out.

Is your child nearly 16? Read our new guide for parents, Personal Independence Payment and other benefits at 16
Personal Independence Payment (PIP) is the new benefit for young people and adults aged 16-64 that’s gradually replacing Disability Living Allowance (DLA). To help guide you through how to claim if your teenager is asked to claim PIP and what to do if they're not yet able to manage their own affairs, our expert advisers have written this helpful parent guide: Personal Independence Payment and other benefits at 16 [PDF]. Alternatively you can call our freephone helpline on 0808 808 3555 for your free print copy of the guide.

Money matters – more help and advice from Contact a Family
You might also be interested in these free guides for parents, also available from our helpline 0808 808 3555:

Money Matters - England, Scotland and Wales [PDF]

A guide to claiming Disability Living Allowance for children [PDF]

Disability Living Allowance for children with learning disabilities - high rate mobility component [PDF]

Help with Council Tax bills [PDF]

Carer's Allowance - a benefit for carers [PDF]

88,000 households affected by lowering of benefit cap
On 7 November the household benefit cap was lowered from £500 per week to £442 in London and to £385 elsewhere. An extra 88,000 households are expected to be affected by this lower cap. The good news is that in addition to being exempt from the benefit cap if you have a dependent child who is on either Disability Living Allowance (DLA) or Personal Independence Payment (PIP), you can also be exempt if you are entitled to Carer's Allowance (including those who qualify but are not paid Carer's Allowance due to receipt of another benefit) or get a carer element in your Universal Credit.

Read more about the cap and answers to some of the most common questions we get asked about it.

Bedroom tax update - Supreme Court upholds family’s bedroom tax challenge
In November the Supreme Court dismissed the government’s appeal against the Rutherford family’s successful challenge to the bedroom tax. Last February the family challenged the decision to cut their housing benefit under the 'bedroom tax' rules and successfully argued they needed an extra bedroom because their severely disabled grandson needed an overnight carer. The government’s attempt to appeal the Court of Appeal’s decision was dismissed in November by the Supreme Court who unanimously agreed that not allowing an extra bedroom for a child needing an overnight carer is 'manifestly without reason'. Read Contact a Family’s response to the Supreme Court’s decision.

Government to scrap ESA reassessments for those with lifelong severe conditions
In October the Work and Pensions Secretary, Damian Green, announced that the government will abolish Employment and Support Allowance (ESA) reassessments for those with life-long severe health conditions with no prospect of improvement. Read our response.

Extra Costs Commission highlights the extra costs of disability
In October the Extra Costs Commission - an independent inquiry into the extra costs faced by disabled people and their families - made recommendations to help drive down the additional costs of disability.

Contact a Family's own research [PDF] shows that a quarter of the 3,500 parents who took part in our Counting the Costs survey said that every month they face £300 or more extra costs relating to their child's disability or health condition.

Claiming Disability Living Allowance to help with extra costs
Don’t forget, Disability Living Allowance (DLA) is the main benefit for disabled children and is there to help meet some of the extra costs of having a disabled child [PDF]. Families describe getting DLA as life-changing - that's why it's so important to claim DLA and not miss out. However, we know that take-up of DLA is low and millions goes unclaimed. We want more families to get advice on this life-changing benefit. Call our helpline so we can talk you through the rules for getting DLA and send you our free DLA guide.

We want your thoughts on improving our advice service
Have you called our helpline recently? Do you use our website to find advice on caring for your child? Are you an active member of our Facebook community? If the answer is yes, we'd like to hear from you.

Help support our work
This free newsletter takes many hours to research and write. If you have found it useful, please consider a one-off or recurring monthly donation of your choice to support Contact a Family’s work with families of disabled children in the UK. You can find out more on our donation page.

What kind of fundraising activity takes your fancy?
Do you like the sound of hosting a coffee morning for your loved ones? Got your eye on a fitness challenge like a fun run or a marathon? Could you gather your friends together for a quiz night?

If the answer to any of these is yes, we'd love to hear your thoughts on the kind of fundraising events you might interested in to support Contact a Family. And if the answer is no? We want to hear from you too! We want to know what barriers put you off fundraising - maybe the events don't appeal, or you're pushed for time? If you’d like to help please answer the questions in our short survey now and find out why we are asking.


Parks Surveys

Some parent carer members and young people of our Forum, over the Summer have worked with Reading Borough Council and assessed Reading Parks for suitability for families with children with disabilities. Findings as attached. Click on filename to open pdf file.

AMBROOK ROAD PLAY AREA ARTHUR NEWBURY PARK CHRISTCHURCH MEADOWS
EMMER GREEN PARK KENSINGTON PARK PALMER PARK
PROSPECT PARK SOUTHCOTE FARM LANE PLAYGROUND THAMES PROM PARK

Consultation Launched on the Provision of Short Breaks for Children with Special Educational Needs and/or Disabilities.

To parents, carers and young people.

Consultation Launched on the Provision of Short Breaks for Children with Special Educational Needs and/or Disabilities.

Reading Borough Council is inviting parents and carers of children and young people with Special Educational Needs/Disabilities to have their say on the future of short break provision in the Reading Borough.

Short breaks allow children with SEND to take part in after school, evening, weekend or holiday clubs and give family carers valuable time off to help manage the pressures of caring.

The council wants to know what families value or look for in a short break service, what aspects of the service they feel could be improved and how the council can support families to use direct payments to buy the short break service which suits them best.

The aim of the consultation is to help inform how the service is delivered in the future with a view to improving choice and control for eligible families and to create a more personalised approach with individualised packages.

The consultation launches on Friday 20th May 2016 and will run for 90 days ending on the 17th August 2016 which covers the summer holidays to provide families with the fullest opportunities to respond. It can be completed online at www.reading.gov.uk/yoursayshortbreaks

There are a series of consultation meetings taking place at various locations, information dates, locations etc. can be found on the above link.

They will also publish this information on the Reading Services Guide.


Disabled Children & Young Peoples Register

The Disabled Children & Young People's Register is a secure database which aims to capture information about all children and young people with special educational needs and disabilities (SEND) 0 - 19 years, living within Reading Borough Council area. The information that you give us will be used anonymously to show the use of and demand for services in Reading. We will use this information to help us to plan, monitor and develop appropriate facilities and services for disabled children, young people and their families. NOTE: This register is for Reading Borough Council residents only.

The register is managed by the Family Information Service (FIS) Registering is voluntary but we would like to encourage as many of you as possible to register so that we can get as clear a picture as possible of the needs for support in Reading.

... to register and for more information go to this link http://search3.openobjects.com/kb5/reading/directory/dcr.page


Have your say on the Adult Wellbeing Position Statement 2016-17

The Care Act gives us new responsibilities towards those who may need care or support, and our Adult Wellbeing Position Statement describes how we will fulfil these new responsibilities. Individual wellbeing is affected by a range of factors, and this statement recognises the impact of the places where we live, work and play as well as our health and social care provision.

We are pleased to present Reading's first Adult Wellbeing Position Statement, a framework for developing our services to meet our Care Act obligations and so prevent, reduce and delay care and support needs across the local population.

This Position Statement can be viewed in detail: Adult Wellbeing Position Statement – Draft for consultation and will be accompanied by a high-level implementation plan for 2016-17, which will be refreshed in subsequent years and incorporated into our broader Health.

Have your say

If you would like to have your say please complete the online consultation form.

The consultation runs until 18th March 2016.

If you would have any queries on the draft position statement please contact us at transformation@reading.gov.uk or on 0118 937 2383.


Sent on behalf of Diane Rochford (Chair of the Rochford Review

Good afternoon,


You may be aware of the independent review I was asked to chair by the Minister for Schools. The review was asked to advise the Department for Education on statutory assessment arrangements for pupils working below the standard of national curriculum tests, including those with special educational needs and disabilities. We are pleased to inform you that Sherann Hillman co-chair of the NNPCF Steering Group, also sits on this board. As part of our work, the members of the Rochford Review are keen to hear the views of anybody with an interest in this area. I would like to invite you to complete our survey https://www.surveymonkey.co.uk/r/rochfordreviewsurvey.


We are seeking to gain a wide range of views from stakeholders and would encourage you to share the survey with any of your contacts who may be interested. Please note that all survey responses will be treated as confidential. The survey will close at 23:59 on Monday 22nd February, 2016.


Further information about the Rochford Review is available here. Since the publication of our interim recommendations and pre key stage standards (KS1 and KS2) in December, we are now working on our final report, which will be published in Spring/Summer 2016.

Yours sincerely
Diane Rochford
Chair of the Rochford Review


Help with fuel bills and keeping warm

Dear Forums

If you are running any events you may wish to print off this publications order form – you can also find it by typing ‘publications list’ into the top search bar of our website. Forums who want leaflets can be provided with a pack of relevant leaflets so do let Ruth Stannard if you wish to receive this. Ruth Stannard ruth.stannard@cafamily.org.uk

Help with fuel bills and keeping warm

Families with disabled children who get:

  • certain means-tested benefits, or
  • child tax credit, and
  • receive a disabled child’s premium in their award

are now included in the ‘broader category’ of people who can apply for help under the Warm Homes Discount scheme. (This is a win from our Counting the Costs campaign!)

The disabled child’s premium is an extra amount paid if a child counts as disabled, and should be listed on the award notice.

We are urging families to contact their energy supplier as soon as possible to apply under the broader scheme as awards are given on a first-come-first-served basis.

(see page 6).

We’ve got new printed guides for Fathers in stock – it looks like this….

And Siblings looks like this now.

The publications order form – you can also find it by typing ‘publications list’ into the top search bar of our website.

Contact Ruth Stannard if you want to get a pack of literature to use at events – remember parent carers can order them free by ringing the helpline below.

Best wishes,

Sue Mennear, Parent Participation Adviser South West Region & Berkshire, Contact a Family (Monday to Thursday)

Tel: 0117 9512387


The “Employment is Everyone’s Business” project

The “Employment is Everyone’s Business” project is funded by the Department of Education to identify and develop best practice in the transition of young people with disabilities from education to employment. BASE/NDTi is working across the Berkshire local authorities to support the meeting of employment aspirations and part of the project includes engagement with parents/carers of young people with Special Educational Needs to understand what’s working well for them and what could be improved.

Here is a short questionnaire for completion by parents/carers.

Please return responses to nerise.oldfield@base-uk.org by 23rd October.

If you have any questions please don't hesitate to contact her on 07501095980.


Factsheets for Disability Living Allowance (DLA)

Dear all

The Department for Work and Pensions (DWP) have just updated a couple of factsheets for Disability Living Allowance (DLA) ending and the need to claim Personal Independence Payment (see links below). From October, DLA recipients in Reading will start to receive a letter from DWP about DLA ending.

https://www.gov.uk/government/publications/disability-living-allowance-is-ending-claimant-journey

https://www.gov.uk/government/publications/disability-living-allowance-is-ending-claimant-factsheet

You may wish to share these links with your networks, contacts and adults you know who are in receipt of DLA.

If you have any queries, please contact us.

Regards

Nina Crispin

Consultation & Engagement Officer, Adult Care and Health Services, Reading Borough Council, Level 2, Civic Offices, Bridge Street, Reading, RG1 2LU

T: 0118 937 2383


The National Wheelchair Alliance launches Charter & National Campaign

Launched 20th July.

Full details at:

http://www.nnpcf.org.uk/the-national-wheelchair-alliance-launches-charter-and-national-campaign/

Some of you will have heard about the Wheelchair Leadership Alliance and the new Wheelchair Charter that was launched on 20th July.

There have been over 1,800 pledges of support for the Charter and the Campaign to improve Wheelchair Services so far, but we need many more to ensure that NHS England and the DOH have sight of the strength of support behind this initiative.

Please pass this on to parents in your areas so that we can gain their support. Also sign up as forums and individuals to increase the pledge count. Also, get in touch with your local CCGs and Local Healthwatches to raise awareness about the Charter and encourage your CCGs to sign up to it.

Thank you,

The NNPCF

National Network of Parent Carer Forums (NNPCF)

c/o Contact a Family
209-211 City Road
LONDON
EC1V 1JN

Direct line: 020 7608 8708


Transition to the new 0 to 25 special educational needs and disability system

Departmental advice for local authorities and their partners

Read more (pdf)


The Children and Families Act
The Role of Parent Carers when your Child reaches 16

As parent/carers we know that moving from children’s to adults’ services can be very difficult. One of the key parts of the Children & Families Act 2014 is how the new SEND system will improve life outcomes for young people from 14-25 years who have Special Education Needs (SEN) and to ensure this transition is seamless.

Read more (pdf)


Don't let the next Government forget about disabled children

Dear Pauline

We believe that all disabled children, young people and their families should be able to lead fulfilling lives and be part of their community.

Our new report, 'Right from the Start: what we want from the next Government' shows that we are still a long way from achieving this. We want policy making across Government to recognise the needs of disabled children, young people and their families right from the start.

Share our report with your local Parliamentary candidates so the voices of families with disabled children are not forgotten.

'Right from the start' highlights that:
8 out of 10 family carers are at breaking point because of a lack of short breaks
9 out of 10 parent carers are concerned about cuts to local services that they or their families need
Only 16% of mothers with disabled children work compared to 61% of all mothers -due to barriers to employment including lack of access to childcare for disabled children

Families with disabled children should be given the support they need to participate in their community and reach their potential.

Together we can make sure the new Government considers the needs of disabled children, young people and their families' right from the start. Email your Parliamentary candidates today and share our report with them


Right From The Start - read the report

We are asking for the new Government to consider the needs of disabled children, young people and their families Right from the Start.

Online Local Campaign Guides

Want to run your own local campaign but don't know where to start? EDCM have developed a range of interactive online guides to give advice on how to campaign effectively, with case study videos, top tips and useful resources. Read the guides.

Counting the Costs

The Counting the Costs report, from Contact A Family has found that families with disabled children are going without the basics like food and heating. Find out how to get involved

Thank you for your support,
Debbie, Peter and Vicky
The EDCM Team


Reading Mencap and Reading Families Forum

Reading Mencap and Reading Families Forum jointly sponsored a brilliant event at St.Laurence’s Church in Reading on Wednesday 14th May where Luke Clements, Professor of Law at Cardiff University, spoke about Community Care law and disabled children and their parents. This lively and well attended event informed both parents, the voluntary sector and professionals about children’s and carer’s rights, the law and some common misconceptions about exactly what local authorities must do to support them.


EXCITING NEW SCHOOL GROUP PROJECT

Reading Families’ Forum is very pleased to have received funding from the Council for Disabled Children to set up support groups for parent carers and to undertake a video project with young people to capture their views and experiences.

Read more (pdf)


Every Disabled Child Matters.

"At the moment disabled children don't count. All that happens is government fights every step that parents try to make and tries to cut to the bone services for disabled children year on year."

- Parent and former professional working with disabled children

The quote above is from the Parliamentary Hearings on services for disabled children in 2006. Since then, two different governments have introduced wide ranging reforms to provision for disabled children and young people.

Yet many families with disabled children tell us they still feel ignored and pushed to crisis point by a lack of support with many experiencing stress and exhaustion as a result.

The countdown to the 2015 general election begins now and we need your help to make a difference.

Every Disabled Child Matters wants to make sure that whichever party forms the next Government after 2015, they do not ignore the needs of families with disabled children. We want departments across Government to consider how they can improve the lives of disabled children and young people and to achieve this we need all parties to understand the reality of your lives.

You can be part of our campaign by telling us the real stories about your day to day lives. We'll use these stories to tell the parties what life is like for families with disabled children in 2014.

If you are a parent carer of a disabled child we want to hear about the joy that your children bring to your family and what support makes it easier for them to reach their potential. We also want to hear about the challenges you face and how these challenges make your lives more difficult. We would welcome joint stories from you and your children.

Please complete this short online questionnaire to tell us your story and take part in our campaign.


We also want to hear from disabled young people aged 18-25. Please complete this questionnaire if you are a disabled young person or share it with someone you know who might like to take part.

Accessible versions are also available so please get in touch at info@edcm.org.uk.

Other News

Ambitious About Autism launch 'Ruled Out'

The new campaign aims to ensure every child or young person with autism can access the quality education they need to learn, thrive and achieve. Find out more here.

Sibs publishes guide for children and young people

The charity for brothers and sisters of disabled children have produced information for children and young people with disabled siblings. You can download it here.

 

Best wishes,

Beatrice and Peter
EDCM Team

Every Disabled Child Matters is the campaign fighting for rights and justice for every disabled child. Please sign up to support the campaign now, and ask everyone you know to do the same.

You can donate to EDCM online.

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Registered Charity No. 258825. Registered in England and Wales No 952717. Registered office: National Children's Bureau, 8 Wakley Street, London, EC1V 7QE.


Become a service user or carer member of the group developing NICE guidance about moving from children's to adult services for young people using health or social care services.

The National Institute for Health and Care Excellence (NICE) and the NICE Collaborating Centre for Social Care are looking for applications from service users and carers to be part of the group that will develop guidance about moving from children's to adult services for young people using health or social care services.

The key focus of the guideline will be about young people using children's health or social care services at the time when they are due to move into adult health or social care services, which could be at any age up to 25. The guideline may have a particular interest in young people in unstable living conditions, including looked-after young people who may be less likely to have family support. As transition planning should start early we are interested in the views of young people from 16 years and over. Please note that the guideline will cover the needs of parents and carers as well as those who use services.

Members of this group will play a key role in making sure thatthe views of service users and carers, and their experiences and interests, inform the development of the guidance and recommendations for social care and the NHS.

All members of the guideline development group have equal status, which reflects the relevance and importance of their different expertise and experience. The group includes health and social care practitioners, service providers, and researchers, as well as service user and carer members. All group members need to attend regular meetings and to prepare for them in advance, including reading relevant papers.

Full details here (website)


Children and Families Bill Published.

Children and Families Bill represents a ‘lost opportunity’ for disabled children

Tuesday, 05 February 2013

Campaigners warn Government reform will create a ‘two tier system of support’

The Every Disabled Child Matters (EDCM) campaign and Irwin Mitchell Solicitors have expressed concern that the Children and Families Bill, introduced to the House of Commons today (Tuesday, 05 February 2013), will fail to establish a joined up system of health and social care support for children with SEN, and will exclude disabled children from integrated support if they don’t have identified educational needs.

Children with special educational needs and disabled children face significant barriers to getting the support they need from health and social care services. In order to address this, the Government proposed SEN and disability reform measures, and commissioned local areas as pathfinders to improve support for children with SEN and disabilities.

However, the Bill published today only applies to children and young people with SEN – and explicitly excludes disabled children without SEN. This means that many children with health needs such as cancer would not benefit from a simplified system of support.

Irwin Mitchell Solicitors said: “Although the draft Bill proposes modest additional obligations in relation to the integration of education, health and care services for children with special educational needs, it establishes no new duties on any public bodies to actually provide health or care services to disabled children. This is, in our view, the major shortcoming in the draft legislation.”

Laura Courtney, EDCM Campaign Manager said: “This is a deeply disappointing lost opportunity. We cannot understand why the Government is so set on excluding the disabled children who do not have SEN, but need health and care support, from the system proposed in the draft Bill. These children will be accessing the same services within health and social care, commissioned through the same processes as those with SEN. We are concerned that if commissioners are required to consider their needs separately, a two tier system of support will be created, in which disabled children without SEN risk being marginalized and given a lower priority. We will be calling on MPs and Peers who are supportive of disabled children to ask the Government to amend the Bill as it goes through Parliament.”


For the latest news on the changes to Special Educational Needs provision due to start this September, follow this link.

www.sendpathfinder.co.uk


The final 2012 edition of the Council for Disabled Children's e-bulletin came out this week.

It includes a feature on key working, FAQs on the SEN and disability reforms, and information on what the NHS mandate means for children. Subscribe for your free copy by e-mailing cdc@ncb.org.uk


Letter from Edward Timpson (Parliamentary Under Secretary of State for Children and Families) regarding SEN and disability reforms

Edward Timpson, the Minister responsible for SEN and Disability within the Department for Education, recently gave evidence to the Education Select Committee on the draft provisions of the Children and Families Bill that relate to SEN and disability. He also met CDC and others to talk about concerns and issues. As Strategic Partner for SEN and Disability to the Department for Education CDC alerted him to the fact that parents were concerned that the reforms would erode their current rights in relation to education support. As a result of this the Minister undertook to write to parents through CDC in order to address these concerns.

Letter from Edward Timpson (Parliamentary Under Secretary of State for Children and Families) regarding SEN and disability reforms (PDF, 764 Kb)


Challengers Reading - Activity Weekends

Overnight Activity Weekends for disabled children and young people living in Reading

Please click the link below to download pdf for more information.

Disability Challengers Activity Weekends (PDF, 329 Kb)


Green Paper, Support and Aspiration: A new approach to special educational needs and disability

The report responds to recent consultations regarding the proposed radical reform of the current system for identifying, assessing and supporting children and young people who are disabled or have SEN and their families.

Please click the below to read the full report.

Support and aspiration: A new approach to special educational needs and disability - progress and next steps (PDF, 410 Kb)


Government announces legislation to improve provision for disabled children

The Queen's Speech announced on Wednesday 9th May a Children and Families Bill, which will include measures to improve provision for children with special educational needs and disabilities.

Please click the link below to read the article published by Every Disabled Child Matters.

www.edcm.org.uk


The Council for Disabled Children (CDC)

The Council for Disabled Children (CDC) is the umbrella body for the disabled children's sector in England.

CDC's vision is a society in which disabled children's needs are met and their rights respected.

CDC aims to make a difference to the lives of disabled children and children with special educational needs. They do this by influencing Government policy, working with local agencies to translate policy into practice and producing guidance on issues affecting the lives of disabled children.

Please click on the link below to this very useful website which includes more information about the CDC and a very popular resource section with a complete list of an extensive range of books, practice and participation guides and more. Many of these resources are available free of charge.

www.councilfordisabledchildren.org.uk/


Insight Into the NHS

Reading Families’ Forum held its first event of the year on Tuesday 6th March 2012, at the Royal Berkshire Conference Centre.
Insight into the NHS was a great success, and was well attended by parent/carers and professionals, who all reported finding the event very interesting and informative.

We enjoyed some great presentations given about the proposed ASD pathway, and the fantastic work done by the Paediatric Integrated Nursing Service.

Click the links below to view some of the presentations.

 

New Changing Places Disabled Toilet Opens

Work has been completed on a state-of-the-art toilet and changing room in the Reading Town Centre.

For more information click on the link below.

   

GALLERY SECTION:

Click here

t: 07516 185380
e: fran.morgan.rff@gmail.com
 

© copyright Reading Families' Forum 2012