#ThisIsMyChild MumsNet Special Needs campaign

Tania writes…

MumsNet have today launched a new “myth-busting and awareness-raising” campaign called #ThisIsMyChild.

thisismychild-250It’s been launched in response to requests from MumsNetters and supported by input from some of the leading charities in the field.

Its aim is to support parents of children with additional needs, inform everyone else, and open up a conversation about how we can all act to make life easier for everyone caring for children with additional needs.

I am delighted and very excited to have been asked to support the campaign and will be picking my favourite posts from a Linky being launched on Tuesday – so standby for that.

Debs and I will  also mention some of the posts here on SNJ as the campaign progresses.

For this campaign to be a success MumsNet need it to reach far and wide, so please share as widely as possible – via Twitter (@MumsnetTowers), on Facebook , Google+ and anywhere else. You can use the HashTag #ThisIsMyChild on Twitter, Facebook & G+ too.

Already up is a Gallery, Mythbuster, Strategies and Facts and Figures.

The Mythbusters have been collated with help from campaign partners, Every Disabled Child MattersContact A Family and Mencap, and with help from the National Autistic Society.

The strategies is worth reading: I recall once, after the committal of my mother’s ashes, far from home, we went for a pub lunch and ASD Son2 was upset, refusing to eat or drink and had his head down. A woman across from us stared and tutted disapprovingly the entire time until I had finally had enough, got up and challenged her. She replied that she was actually staring at me (which she wasn’t)! Rude and a liar! She soon left. It still makes me cross to think about it, six years later.

Anyway, the campaign is definitely worth joining in with, adding your special needs blog posts to the link when it’s launched,

In case you didn’t know, MumsNet has a whole section on Special Needs with lots of information.

Of course, bloggers who write about their children with disabilities are every week trying to raise awareness, so it’s great that MumsNet is giving all those blogs a boost and helping the cause in such a high-profile way.

If you haven’t been to the MumsNet site in a while, you should pop over as it’s not just for mums of babies, but has an enormous amount of information on parenting, skills & careers (MumsNet Academy) too.

blogfest_headerWhile we’re on the subject, I’m thrilled to say I will be on one of the panels at MumsNet BlogFest joining lots of high profile speakers at the event such as Prof. Tanya Byron, one of my favourite writers, Lionel Shriver, and Louise Mensch. (I’m sitting here going ‘Lots of high profile speakers….and me.)

It takes place on Saturday November 9th. I’ll be easy to spot, probably in the wheelchair with long-suffering Debs pushing. Please say hello if you’re going – I’ll be more scared than you!

Making the Disabled Children’s Charter a health priority

As you are hopefully aware, the beginning of April saw a massive shake-up in the NHS and the creation of GP-led Clinical Commissioning Groups as well as Health and Wellbeing Boards.

The Health and Wellbeing Boards bring together key leaders from the local health and care system to develop a shared understanding of the health and care needs of their local communities and how to address them. They are intended to drive local integration between health, social care and wider partners and reduce health inequalities.

EDCM logoBut with the many priorities that these new bodies will have, the charities Every Disabled Child Matters and The Children’s Trust, based at Tadworth in Surrey have launched our Disabled Children’s Charter for Health and Wellbeing Boards to ensure that children with special needs, health conditions and disabilities stay at the top of the agenda.

Because these children often need to access services from across the spectrum of health and care and specialist education services, they are especially vulnerable to suffer the effects of a lack of integration and cooperation between the providers of these services. This can lead to their needs not being adequately met or their families having additional financial burdens placed upon them.

charter_coverThis is why these two fantastic charities are calling on all the England’s Health & Wellbeing boards to sign up to the following seven key pledges:

By [date within 1 year of signing the Charter] our Health and Wellbeing Board will provide evidence that:

1. We have detailed and accurate information on the disabled children and young people living in our area, and provide public information on how we plan to meet their needs.

2. We engage directly with disabled children and young people and their participation is embedded in the work of our Health and Wellbeing Board.

3. We engage directly with parent carers of disabled children and young people and their participation is embedded in the work of our Health and Wellbeing Board.

4. We set clear strategic outcomes for our partners to meet in relation to disabled children, young people and their families, monitor progress towards achieving them and hold each other to account.

5. We promote early intervention and support for smooth transitions between children and adult services for disabled children and young people.

6. We work with key partners to strengthen integration between health, social care and education services, and with services provided by wider partners.

7. We provide cohesive governance and leadership across the disabled children and young people’s agenda by linking effectively with key partners

CTrustThe Charter is accompanied by a document: Why sign the Charter? which explains the value of the Charter commitments with reference to Health and Wellbeing Board statutory duties and powers, and signposts Health and Wellbeing Boards to resources that will help them fulfil each commitment. It also includes a guide to the evidence that Health and Wellbeing Boards could provide to demonstrate that they have met the Charter commitments.

The Government recently responded to the report of the Children and Young People’s Health Outcomes Forum by releasing ‘Better Health Outcomes for Children and Young People: Our Pledge’. This set out the shared ambitions for all agencies in the new health system to improve the health outcomes of children and young people in England. This Charter is aimed at providing a tool for Health and Wellbeing Boards to deliver on these ambitions for a key group of its local population.

The EDCM & The Children’s Trust have jointly sent the Disabled Children’s Charter to every Health and Wellbeing Board in England and asked the Chair to sign it.

You can support their campaign by sending an email to your Health and Wellbeing Board Chair and urging them to sign it too. Find your local Health & Wellbeing Board here or just search for your top-level Local Authority where you live and “Health & wellbeing board”

Looking at our own HWB in Surrey, the board does not have any representatives from the voluntary/community/minority services or any parent representation. I find this something of an anomaly in these new days of transparency and co-production.

What does your local HWB board look like? Does it give you confidence that it will sign up to and can deliver the Disabled Children’s Charter?

Download the Disabled Childrens Charter for HWB

Download the “Why sign the disabled children’s charter for health and wellbeing boards” document here

Early Years Development Journals from NCB

NCB-LogoThe NCB (National Children’s Bureau) website has some brilliant free resources for parents, carers and practitioners available for download.

One is the Early Years Development Journal.

“The new Early Years Developmental Journal is designed for families, practitioners and others to use as a way of recording, celebrating and supporting children’s progress. It is also for people who would like to find out more about children’s development in the early years. It supports key working by helping everyone involved with a child to share what they know and discuss how best to work together to support development and learning.

This Journal is particularly useful if you know or suspect that your child or a child who you are helping is unlikely to progress in the same way or at the same rate as other children – whether or not a particular factor or learning difficulty has been identified and given a name.”

Before you start to use the Journal, you should first read the ‘How to Use’ guide, which you can also download.

There are also specific journals for children who are deaf, visually impaired or have Down’s Syndrome on the same page.

Debs says:

“I was introduced to the Developmental Journal for children with a visual impairment by one of our Consultants.  I was asking how my son’s development compared to other children with VI because I didn’t think it was fair to be comparing his development to a sighted child.  Thankfully, our Consultant was Alison Salt (Consultant Paediatrician – Neurodisability) who was one of the people involved in helping to develop the journal for VI children.

The journal became our bible and it went everywhere with me.  We took it to assessments with Alison Salt, his VI play specialist used it to set targets, we used it with his nursery – it was invaluable as it meant we were all working together with the same information.  We were able to see what my son was able to do, what gaps there were in his development and within the journal for children with VI there are also suggestions on activities.

As a mum of a child with visual impairment, I found it really difficult at the beginning to think outside the box – so many ideas for helping a child to develop are vision based.  Look at the majority of children toys, most of them have buttons that light up to tell you that you chose the right option.

The developmental journal was so useful, it gave us ideas, a true assessment, a mutual reference for all involved and more importantly, it gave us hope.  I really cannot recommend this Developmental Journal enough.  It made me informed and therefore I felt like an equal partner.”

There is so much more on the NCB website from information, training and support, Why not bookmark the NCB website to explore as and when you have the time?

SEN Reforms – The Minister visits

Last Friday a groups of parents from parent-carer forums around the country came together at the Department for Education to talk about how parental involvement in the pathfinder reforms had influenced the process, what was working and what wasn’t.

The parents included myself, Debs (who you will recall runs Kent’s forum) and Angela Kelly, my Surrey Family Voice co-chair.

We talked a lot about the value of what is being called the “co-production” of parents’ voices being valued and listened to and how it must continue after the reforms are put into practice, and preferably, mandated in the Children & Families Bill, or new Code of Practice/regulations.

On hand were DfE officials involved in the bill’s progression and yesterday, Edward Timpson, the minister in charge himself travelled to Disability Challengers in Farnham to meet parents and pathfinder families.

Although, very flatteringly, I had been invited to meet him because of Special Needs Jungle, I was already booked to deliver a half-day social media workshop for a room full of noisy and energetic Stella & Dot independent stylists. It was lots of fun, but I was rather hoarse and brain-dead at the end.

Despite sadly missing my chance to speak to the minister, I knew he was in very good hands with Angela being there, along with other parents.

And Ang, being the good egg she is, has written about the visit here. She did say the Minister had a tear in his eye at missing me too, but I think she was smirking when she said it.

Over to Ang…

The SE7 pathfinder team had an important visit on 14th February. SE7 is a collective group of seven south-east local authorities, parent-carer forums and Voluntary and Community sector organisations, who have come together to trial the reforms proposed in the Children & Families Bill.

On a mild Thursday morning, a collective group of professionals, made up of local authority, voluntary and community sector and parents came together at Disability Challengers in Farnham, Surrey to meet with Parliamentary Under Secretary of State, Edward Timpson. (And yes, I have included Parents in the professional capacity because 1, we are professionals where our children are concerned and 2, we are professional in our capacity as co-producers under the new approach to the SEN reform)

Upon my rather unceremonious and flustered arrival, I was greeted by a room full of familiar and  friendly faces. Co-chairs of West Sussex, Hampshire and Kent parent-carer forums had arrived in a much more timely manner than myself, thank goodness and represented parent participation in a very professional manner.

But most importantly there were young people present and a family who are currently at the Statutory Assessment phase under the current SEN system.  Having young people and families involved in such a key meeting is such a step forward and gives a them a voice, it also enables the people who need to understand this message the opportunity to hear how real people are affected by the current system and what needs to change.

The Minister joined everyone in a circular group and was told about the progress being made so far by all trial areas, while Surrey’s pathfinder manager, Susie Campbell followed with Surrey’s progress regarding the single plan. She explained how Surrey had devised their single plan, focused and the child and their family, and how families and young people had been instrumental in this process. Our draft has gone back and forth until a plan was agreed suitable for testing.

I was then asked what my thoughts were on the single plan and I rather gushingly spilled out how I thought co-production was the only way forward and that by children and families having a voice and being at the heart of the process this would create a culture shift and build relationships with parents/carers and all the authorities.

Mr Timpson spoke with a family about their experience of the current system and the openness of the discussion demonstrated that they were being heard and that a change in the way mainstream schools approach SEN and disability was urgently needed.

There was a very limited discussion about Key Working which, while this was due to time, is something that I feel will have to be further addressed  and  when further trials have been carried out this will be  key area (pardon the pun) to ensure the success of the new approach.

Personal budgets and the Local Offer were next and Co chair of West Sussex spoke of their experiences with personal budgets and how this had enhanced their child’s access to services he actually needed rather than accessing services that were available.

Click to see the Tweet Vine Movie of the card

Click to see the Tweet Vine Movie of the card

I think more time needed to have been spent discussing the Local Offer, as there huge concerns over how this will work and how it will  replace the categories of School Action and School Action Plus and inform parents of services that will be able in cross-boundary areas in a clear transparent timely and effective way

Time seemed to be the main constraint with the meeting as there was a lot to present in such a small amount of time, however that Mr Timpson visited to see what is happening in the trials from the mouths of those involved  demonstrates a willingness to listen learn and understand what is happening with the trials and, if I hadn’t mentioned it before, the importance of co-production!

At the end of the session Mr Timpson was  presented with messages from each SE7 parent-carer forum to the Minister. This was innovatively delivered in a hand made Valentines card.

This was well received and Mr Timpson remarked that it was the most creative lobbying he had ever seen, I therefore feel that because of this, the impact of the messages will resonate for longer and have a greater prospect of successfully informing the change to the SEN and disability reform.

Here’s Family Voice Surrey’s message to the Minister:

Message from Family Voice Surrey- Thank you for listening to and including parents/carers views in the publication of the draft legislation.

Our thoughts are that the new bill needs more clarity. This view is shared by ALL parent carers on our steering group. Statutory protection is necessary for those children and young people who have disabilities that may fall outside of the SEN bracket, these children and young people may have very complex health needs but if they have no special/additional educational requirement then currently they will not be eligible for statutory protection under the single plan.

Family Voice Surrey request that you include:

  • Statutory rights for those aged 0- 5 with an EHCP, ensuring swift and timely access to treatment/equipment to aid the delivery of early intervention
  • A mandatory requirement for children with SEN and Disabilities to receive a level of support from their LA that meet the requirements of their EHCP
  • Minimum national standards for the Local Offer – a specified minimum level of provision that Local Authorities will have a duty to provide to children with education, health and/or social care needs who are not eligible for an EHCP

Pathfinder has shaped co-production and parents and carers are working alongside professionals, practitioners and providers in an unprecedented way and it is working.  Policy and local delivery is being shaped in a pioneering way.   This must continue!

Mandatory requirements for co-production are a central part of the EHCP process, together with the delivery of the Local Offer at a strategic level across all services.

Parent/carer forums have a vital role ensuring that parents receive sufficient support and training to undertake co-production effectively. Recognition is needed for the unique role that parent/carer forums will have in this delivery , with adequate resources provided for this work.

Message from Kent PEPs (Kent parent carer forum)

As a forum we were please to see some of the feedback received from parents/carers has influenced some changes in the draft Children & Families bill, and thank you for listening to our views.

We welcome the changes regarding mediation and the fact it will not become compulsory. We are pleased to see the inclusion of Towards Adulthood as a requirement of the Local Offer and an emphasis on strengthening the participation of young peoples.

However there are still some areas where we have concerns:

  • We are concerned about the lack of inclusion for children & young people who have a disability but not SEN and hope your decision to exclude them will be looked at again, in particular to provide statutory protections for Disabled children & young people who have a specific health/social care need but not severe SEN.
  • There is no indication of a duty to respond to a parents request for assessment within a time limit; will this become clearer when the regulations are published?
  • We would appreciate more detail of the single assessment process, Including how the integrated assessment will work in practice; will this become clearer when the regulations are published?
  • With regards to the Local Offer we urge you to support a standard approach for schools to determine some national minimum standards encompassing what parents/carers can expect from schools, clearly laid out so parents can see how these standards work in practice. This should of course include academies & free schools.
  • We support the call for a national literacy and dyslexia strategy, which includes dyslexia trained teacher in every school, which would support the need to ensure early identification (Dyslexia Action’s Dyslexia Still Matters report).

The pathfinder has certainly increased parent participation and closer working relationships between parents/carers and professionals and we would appreciate support for the vital role parent/carer forums have in ensuring effective co-production continues.

Rare Disease Day: How Dan’s rare disease didn’t stop his mainstream education

facebook-profileRare Disease Day is at the end of February, with the theme ‘Disorders without Borders’. In Europe it’s coordinated by EURORDIS, the European Rare Diseases Organisation.

Many children have special needs because of a rare disease that may present extreme difficulties with being included in mainstream education. Many others, however, whose condition is physical and not a learning disability, simply need support to help them manage the classroom environment on a practical level.

One person such as this is Dan Copeland. I met Dan through my work with DysNet Limb Difference Network. Dan has TAR Syndrome and was only the 18th person recorded in the UK with the disorder. Despite his physical difficulties, Dan, from Liverpool, impressed me with his cheerfulness, humour and can-do attitude.

Dan, now 23, is a student and works part-time as a DJ. Below is the first part of his story, with a link through to the remainder that’s hosted on the RareConnect DysNet rare disease community.

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Dan Copeland

Dan Copeland

My name is Daniel Copeland and I have a very rare syndrome called TAR syndrome which is short for Thrombocytopenia with Absent Radius.

This means I have a low platelet count which causes me to bruise and bleed more frequently and when my blood count is low it causes me to catch viruses more easily than others. I also have no radius bone in my forearm, the rare thing with this is the fact in most genetic cases if the radius is not present then neither is the thumb. But with TAR there is a thumb, although the tendons and ligaments are connected to the ulna bone which causes the wrists of the affected to be turned inwards.
As so little was known about my syndrome as a child, initial diagnoses from knee and hand specialists were not good, telling my parents I would be unable to do basic things from feeding myself to dressing myself. When I was due to start nursery and primary school, the boards were trying to push my parents into sending me to a special school even though all my problems are physical and not educational.
Through my whole educational experience, fitting in was difficult when I started at a new school and college but I quickly integrated into a normal social lifestyle. There were some other disabled children in my school but not many (about six in my school year) so integration with able-bodied children was extra important so as not to become isolated…

Read More of Dan’s story on RareConnect

 

Read our second Rare Disease Day post: My son has Ehlers Danlos Syndrome

SEN Minister offers assurances to parents over Bill wording

 

I’m sharing this information received from the Council for Disabled Children which I hope you’ll find interesting.

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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.

The CDC has now received a letter from Edward Timpson that makes explicit the Government’s commitment to ensuring that protections parents have in the current system will be carried forward into the new system.

You can read the letter at this link

http://www.councilfordisabledchildren.org.uk

Speech Therapy to stay within educational provision – so said the man from the DfE

One question on many lips in the reform to the special educational needs system is, with the inclusion of health in an EHCP, where will speech and language provision end up?

As it stands at the moment, the Health part of an EHCP is not going to come attached to a statutory duty to provide and so if it ends up in the health part of a plan and isn’t delivered, how will you appeal?

However, my friend and SEN barrister, Gulshanah Choudhuri, this week attended the Education Law Association’s specialist SEN group meeting and asked this very question of Phil Snell, policy advisor for the DfE. Mr Snell was giving a presentation addressed to the members of ELA, followed by a question and answer session.

Gulshanah Choudhuri

Gulshanah Choudhuri

Gulshanah asked about her own daughter, who has Down’s syndrome, and whether her speech therapy would go under the new health provision or remain under education. Mr Snell, in front of an audience of around fifty lawyers besides Gulshanah, assured her it would remain under education.

The pathfinders have now been extended until September 2014 – the same month it’s planned to introduce the changes after the bill gets Royal Assent at Easter 2014. This has raised concerns that the legislation will be introduced before the trials on the reforms are complete.

The National Deaf Children’s Society (NDCS) is calling for the bill’s introduction to be delayed, so that the pilots have more time to test the reforms. The charity is particularly concerned about how the new system will fully involve health professionals.

Quoted in Children and Young People Now, Jo Campion, deputy director of policy and campaigns at NDCS, said: “We have been looking closely at the pilots and speaking to families with deaf children. The evidence we are getting back is that professionals in health are not getting involved.

“Some parents are telling us that at the joint plan meetings health professionals are simply not showing up. If these reforms are supposed to be radical then the legislation will need to be strengthened to place a legal duty on health agencies to get involved. Currently that is not there.”

NDCS is also worried that local cuts to education provision will mean less services and staff are available to support children with SEN as the reforms progress.

Mr Campion said: “The cuts are affecting professionals who are working with families in the pilot areas who are under threat of losing their jobs. How will the government be able to test these reforms if there’s no-one left to work with families?”

Contact a Family’s head of policy Una Summerson agreed that the government should take time to consider the evidence from the pilot areas before introducing changes to the law.

“This is an enormous change to the system that needs to be tested properly so we are pleased about the extension,” she said. “But we are concerned that the legislation will be introduced early next year before the government has been able to collect the evidence.”

There are also fears that children with speech and language difficulties could miss out on specialist support under the new system.

The Royal College of Speech and Language Therapists (RCSLT) warned that the majority of children with speech, language and communication needs do not currently have a statement of SEN, and therefore may not be eligible for new single education, health and care plans.

But Christine Lenehan, director at the Council for Disabled Children, said the government is right to extend the pilot scheme due to the complexity of the reforms – despite other concerns about the changes.

“It is encouraging to see the government taking the pathfinder work seriously and giving them additional time to test out what works best in these complex areas,” she said.

Mr Timpson meanwhile said, “We want the best for children and young people who have special educational needs or who are disabled,” he said. “Our reforms will help children get support swiftly, make progress in school and then go on to live independently later in life.”

Source for the second half of this article is Children & Young People Now

Keep Us Close – Scope’s campaign for better local disability services

The charity, Scope, which works to help children and families affected by disabilities, is currently campaigning for improvements to the Children and Families bill, which if you re a regular reader, is currently undergoing pre-legislative scrutiny. Scope Scope’s new campaign called Keep Us Close, is pushing for better provision of local services for disabled children.

If you’re interested in this subject, MumsNet have a Q&A session with the new Minister responsible for SEN reform, Edward Timpson on Tuesday so head over there to pose your question after you’ve read about Scope’s Keep Us Close campaign in this article by campaigns officer, Tom Eldon, written exclusively for Special Needs Jungle.

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Until recently, when I started working for Scope, I had very little understanding of the challenges that families with a disabled child face here in the UK. I’d just spent a year and a half working with an association of parents with disabled children in Mongolia, whose situation was almost unbelievably dire – surely things must be better here.

And to be fair, things are a lot better overall. But what I’ve found out in the past few weeks through national research and speaking to parents and support groups has both shocked me, and motivated me to get involved in fundamentally changing the system for the better.

If you’re reading this blog it’s likely you’ll already know what I’m about to say – that trying to get appropriate support and care for a child with special needs often stresses a family to breaking point. From the initial stage of getting an accurate diagnosis of one’s child’s impairments, through navigating the process that’s needed to get  a statement of special needs (often required to get access to a suitable educational environment), to finding a school that meets their requirements, everyone I’ve been speaking to has been critical of the status quo. And often, even when these hurdles have been overcome, there are many more that remain; most families don’t live close to facilities and services that meet their needs, be it education, respite care, healthcare or even play groups and opportunities for children to socialise.

One mother I spoke to found local support to be so inadequate that she and another parent abandoned the state altogether and started up their own support service to provide advice and activities. Their charity has grown, and they now support the families of nearly 2,000 children, with some of them travelling as far as 50 miles to access their playgroups and meetings – but despite this clear demand they still struggle to raise funds. And these aren’t isolated incidents – time and again I hear the same story of stress and anxiety, of complicated processes and services that fail to meet families’ needs.

A recent Scope survey found that 6 out of 10 families with a disabled child aren’t able to access the services they need in their local area; only 1 in 10 told us that the process of getting local services was simple. Survey respondents’ children travelled an average of 4,300 miles to access services each year – that’s roughly the same as driving from Land’s End to John O’Groats. 7 times. It’s robbing families of their quality time, putting strain on relationships, and often adding a huge financial burden. Families are at breaking point, and the system needs a radical change on a structural level.

So how are we trying to help change all of this?

At the moment the Children and Families Bill is lumbering through pre-legislative scrutiny (as excellently documented here on Special Needs Jungle), providing an opportunity for us to reform a system that’s clearly failing huge numbers of people across the country. Scope have been campaigning for the inclusion of a ‘Provide Local Principle’ clause in the bill, which would:

  • Ensure services in a local area are inclusive and accessible;
  • Put a duty on local agencies to introduce new inclusive and accessible services if they don’t exist in a local area.

This would mean that parents’ views, and their families’ needs,would become integral to the planning and delivery of local services, making councils work together in a joined-up way. Having this clause in the bill would guarantee, in law, that councils have to provide the services family need closer to home.

The campaign, Keep Us Close, has been really successful to date, with over 17,000 campaign postcards and emails taken at the time of writing. But we still need to push the issue harder – many of the responses we get from MPs are broadly positive but lack any real commitment to change things for the better.

If you have a minute to spare, please take our online campaign action and let your MP know that this issue is important to you – that the opportunity for reform that the Children and Families Bill provides mustn’t be squandered. There are hundreds of thousands of families across Britain who deserve better.

Right now we have a critical opportunity to feed into the content of the bill and improve the quality of life of hundreds of thousands of families across the country. We expect the bill to come into Parliament in the New Year, so please, let your MP know that you care about disabled children and their families.

Thank you.

Stop the DLA Takeaway campaign – your help needed

Stop the DLA Takeaway campaign – Contact a Family and The Children’s Trust need your help

The Children’s Trust, Tadworth and Contact a Family would like to hear from parents and carers of children who spend long periods in hospital. The charities are asking families to fill out a short survey which could provide vital information to strengthen their “Stop the DLA Takeaway” campaign.

Link to survey: https://www.surveymonkey.com/s/StoptheDLATakeaway2012

The Stop the DLA Takeaway campaign highlights that disabled children who spend long periods in hospital are at risk of having their Disability Living Allowance (DLA) suspended. Current regulations mean DLA payments are suspended if a child’s hospital stay is more than 84 days. The days do not have to be consecutive, so hundreds of severely disabled and sick children, who are regularly in and out of hospital, could be affected.

The Government argues that when a child spends longer than 84 days in hospital ‘a patient’s needs are fully met free of charge’. However, Contact a Family and The Children’s Trust hear from families that they provide the same or more care when their child is in hospital and incur extra costs such as loss of earnings, travel to and from hospital, parking and childcare expenses.

If you are the parent or carer of a child who has spent a long time in hospital you can complete the short survey here: https://www.surveymonkey.com/s/StoptheDLATakeaway2012

This information could help Contact a Family and The Children’s Trust strengthen their call for the Government to scrap the rules that deny some of the UK’s most severely disabled children financial help when they need it most.

For more information visit the Children’s Trust website.

Latest information and advice for families

Contact a Family’s latest updated parent guides include:

Parents can order free hard copies of Contact a Family’s printed guides by calling our helpline on 0808 808 3555.

It’s Dyspraxia Awareness Week – be alert for early signs

The Dyspraxia Foundation is calling on families to be alert to the early signs of the condition in their awareness week campaign from 14th – 20th October 2012.

Chair of the Foundation Michele Lee said: “Many parents are unaware of the early signs of dyspraxia. It is vital families are on the lookout so we can ensure their children benefit from help and advice as soon as possible. All the research shows the earlier children are helped, the better their chances are for achieving their potential in the future. Early identification means that children can be referred for the help of specialists such as occupational therapy or physiotherapy whose input can be invaluable.”

“This year we have worked with CBeebies to develop a new early years programme, Tree Fu Tom, which encourages the development of foundation movement skills in all children, but especially those with dyspraxia. We are delighted that the series reached over 300,000 children aged 4-6 years in the first series and that parents are reporting improvements in their children’s motor skills and confidence”.

Dawn, mum of Rowan aged 5 years says “My son was diagnosed with dyspraxia by a consultant paediatrician last year. Rowan loves watching Tree Fu Tom with his younger sister and they both join in with the spells. Rowan tries really hard to master the movement sequences and takes this very seriously. He says that Tree Fu Tom is just like him!

With practice Rowan has got better at the spells and he doesn’t fall over as much. He’s also getting better at staying in one spot rather than migrating around the room, and he has started to be more aware of where his sister is when they are doing Big World Magic together

Early signs of dyspraxia can include:

  • Being late to achieve motor milestones such as sitting and walking
  • Some children avoid crawling or bottom shuffle instead
  • Frequently falling
  • Difficulty manipulating toys and other objects
  • Being a messy eater
  • Having speech/language problems
  • Slow to respond to instructions
  • Sensitivity to noise, touch and other sensory information

Dawn’s advice to other parents is “Be persistent. We felt that something wasn’t right for Rowan. He never jumped and couldn’t manage buttons or hold a pencil, but because he is a bright boy he compensated for his difficulties so they weren’t noticed by his nursery teachers. Fortunately our GP listened to our concerns and referred Rowan to the paediatrician for an assessment”.

Dawn also says: “It can be really hard to get help for young children with dyspraxia and it’s so frustrating trying to get your child to do things that they find difficult. We are so lucky to have Tree Fu Tom which is something fun that we can do with Rowan that we know will make a difference. There are lots of wonderful things that Rowan can do and it’s important to focus on them and not what other children are doing.”

If parents of pre-school children are concerned about their child’s development they should speak to their GP or Health Visitor. Further information about dyspraxia can be downloaded from www.dyspraxiafoundation.org.uk. All the advice and guidance produced by the Dyspraxia Foundation is written in consultation with people affected by dyspraxia and checked by professionals.

As part of Dyspraxia Awareness week a survey is being launched to gather information from parents about their early experiences of trying to get their child’s difficulties recognised. The survey findings will help to develop targeted resources to enable parents and early years professionals to recognise the early signs of dyspraxia and to provide the help and support these children need. A link to the survey will be available on the Dyspraxia Foundation website during Dyspraxia Awareness Week www.dyspraxiafoundation.org.uk

The Dyspraxia Foundation is also holding a two-day conference for parents and professionals in Bournemouth on 9/10th November 2012 with renowned speakers Dr. Madeleine Portwood, Barbara Hunter and Gill Dixon. Further information about the conference and a booking form is available from admin@dyspraxiafoundation.org.uk

Upcoming events for Tourette’s Action

A while ago, I ran a post about Tourette’s Syndrome which  received a lot of interest. The other day, I received Tourette’s Action sent me a news release with some event information, so I thought I would share it with you, in case any of you were interested in attending.

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Tourettes Syndrome is very topical at the moment, with Tourettes: Let me entertain you, showing on BBC 3 and Episode 3 airs next Monday 24th September 2012.  Reggie Yates is presenting these programmes and the young people with Tourette Syndrome taking part are making appearances on other shows and in various media, such as Radio 1 and ITV’s This Morning.

We would like to use this opportunity to raise more awareness of Tourette Syndrome in a correct and factual manner and to reach out to adults and families who are living with Tourette Syndrome every day of their lives.  We would like to inform them of the information and support services available to them and of Tourettes Action events around the UK.

Tourette Syndrome is an inherited neurological condition. It affects one schoolchild in every hundred and more than 300,000 children and adults in the UK. The key feature is tics, involuntary and uncontrollable sounds and movements.   TS is sometimes known as multiple tic disorder or tic spectrum disorder.  In most cases TS is also linked to other behaviours, most often Obsessional Compulsive Disorder (OCD) and Attention Deficit Disorder (ADD).

90 percent of people with TS do not swear uncontrollably (coprolalia). 

TS starts in childhood. For about half of children with TS, the condition continues into adulthood.

Tourette Syndrome can have a huge impact on a person’s physical, mental and social wellbeing and can also affects the whole family.

Tourettes Action is a charity working to make life better for people with Tourette Syndrome, by providing support and information as and when it is needed.  To help achieve this and in order to reach out to people in their communities,  Tourettes Action also organises Conferences, Events and Group Meetings in England, Wales and Northern Ireland.

FORTHCOMING EVENTS for adults and families with experience of Tourette Syndrome

CONFERENCE IN BIRMINGHAM

TA Conference on TS for Adults in Birmingham – Saturday 1st December 2012 10am – 4pm

Birmingham University – Cost is £20 each, to include full Conference programme, refreshments and buffet lunch.

Book and pay online at: http://www.tickettailor.com/checkout/view-event/id/5782/chk/d011

An evening social event is also being planned in Birmingham, which is likely to include supper and attract an extra cost.

WORKSHOPS AND GROUP START UP MEETINGS

We have received funding from BBC Children in Need for six workshops each year, for three years. So far this year we have already visited Hartlepool, Northern Ireland and Dartford, and we have three more planned for Bristol and Liverpool in the coming months.

Bristol: Sat 29 September 2012 2:00 pm – 4:00 pm.  Booking at: http://www.tickettailor.com/checkout/view-event/id/5363/chk/1615

Liverpool: Sat 13 October 2012 2:00 pm – 4:00 pm. Booking athttp://www.tickettailor.com/checkout/view-event/id/5365/chk/1c77

TA GROUPS – PLANNED MEETINGS

TA Group – Hastings – start up meeting  Sun, 14 October, 14:00 – 16:00

TA Group – London  London area on Sunday 30th September in the Finsbury Park area.

TA Group – East Anglia – Norfolk and Suffolk  6th October 2012 in Diss. Time to be confirmed.

TA Group North East – Future dates: Saturday 6 October; Saturday 17 November; Saturday 8 December (Christmas Party)

TA Group West Midlands – 22September (Saturday) 1.30pm – 4pm in Kersley End, Coventry.

TA Group TLC – Galashiels on Sat/Sun 20th/21st October.

We are also in touch with many befrienders around the UK, who are happy to correspond and share their knowledge and experiences with others. On behalf of all at Tourettes Action, we sincerely hope to see you at one or more of the events above. For further information on any of the above, please contact: julie@tourettes-action.org.uk

www.tourettes-action.org.uk

Financial affairs advice for your special needs child for when you’re gone

It’s a difficult subject to think about, let alone tackle, but for many parents of children with severe and complex learning disabilities, who are unlikely to be able to like independently, it is a vital issue – how to make sure your child’s financial affairs are managed when you are no longer here.

The charity Mencap has a solution to help those families concerned with this type of forward decision-making. They have a wills and trust team that can provide  parents, families and carers with free booklets about writing wills and setting up trusts for the benefit of a loved one with a learning disability.

If it is likely you will be leaving them a substantial sum of money – or even a smaller amount, you will want to ensure that you are not leaving them in a vulnerable position. You may also be keen to ensure that they continue to receive their benefits but still enjoy their full inheritance.

The Wills and Trusts team also organises free seminars around England, Wales and Northern Ireland. The free two-hour seminars offer vital, specialist legal advice and give families and carers a much needed opportunity to get answers to those difficult questions that often make the process seem so daunting.

The next Planning for the Future events in your area are:

  • North East – February/March
  • East Midlands – March
  • Wales – April
  • Northern Ireland – May
  • East – May
  • London – June
  • South East – July
  • South Central – September
  • South West – October
  • West Midlands – November
  • North West – November

For specific dates and locations of seminars taking place in your area, visit http://www.mencap.org.uk/pffe

Mencap says  places at these seminars are always very popular so please book your place as early as possible to avoid disappointment. To book your place at any of the events please use our online booking form: https://www.mencap.org.uk/webform/book-place-planning-future-event 

Alternatively, please contact Gina Collins on 020 7696 6925 or email willsandtrusts@mencap.org.uk 

If you cannot make the event but would like information about providing for someone with a learning disability in your will call the team on: Tel:  020 7696 6925

Visit: www.mencap.org.uk/willsandtrusts 

Email: willsandtrusts@mencap.org.uk

Conference on Pathological Demand Avoidance

A few months ago, Special Needs jungle ran an article about Pathological Demand Avoidance by Deborah Rourke There was an incredible amount of interest in this article, written from Deborah’s experience.

In November, the National Autistic Society is to hold another conference on PDA. Information on PDA is extremely limited and this event will be a rare opportunity to hear experts speaking on the latest research and best practice. Last year, it was sold out, so if you’re interested and can get to Edinburgh, don’t delay in booking your place.
The main difficulty for people with PDA is their avoidance of the everyday demands made by other people, due to their high anxiety levels when they feel that they are not in control. However, because they tend to have much better social communication and interaction skills than other people on the spectrum, they can use those skills to disguise their resistance through avoidance behaviour.
Date: Thursday 15 November 2012
Location: John McIntyre Conference Centre, Edinburgh
Attend to: 

  • hear the latest research findings
  • understand what PDA is and what the implications are if a child is diagnosed with the disorder
  • learn practical strategies for interacting with children with PDA
  • network with other professionals, parents and experts in the field.

This conference will provide professionals and parents with clearer understanding of the diagnostic criteria for pathological demand avoidance syndrome (PDA).

The conference will also feature essential strategies for education, management and communication of children and adults with PDA. Our programme of expert speakers includes:

  • Dr Judith Gould, NAS Lorna Wing Centre for Autism
  • Phil Christie, The Elizabeth Newson Centre
  • Ruth Fidler, Sutherland House School
  • Dr Jacqui Ashton-Smith, Executive Principal, Helen Allison and Robert Ogden schools.

For more information or to BOOK your place, please visit:  http://www.autism.org.uk/conferences/PDA2012

KFC dish out work placements to ‘shunned’ youngsters

News today of a great initiative to help young people who are socially disadvantaged to gain valuable work experience and find a potential new career path.

The UK’s largest children’s charity Barnardo’s has joined forces with restaurant chain KFC to help Barnardo’s service users get a foot on the job ladder. Evidence provided by Barnardo’s shows that vulnerable young people are more likely than their peers to struggle to find work:

  • Permanently excluded children are 37% more likely to be unemployed than those who complete mainstream schooling;
  • Those who have engaged in substance abuse or criminal acts by the age of 13/14 are more likely to struggle to get into employment, education or training;
  • 33% of care leavers are not in employment, education or training at age 19;
  •  12% of 16 – 18 year olds with learning difficulties are NEET compared to 6% of those without disabilities

The new partnership harnesses KFC’s expertise in training and development, and invites young people from Barnardo’s are invited to interview for a work placement in their local KFC restaurant. The work placement can last from 1 day up to four weeks and is followed by a work review. Depending on their ability, a young person may complete one or all stages of the programme.

Barnardo’s Chief Executive Anne Marie Carrie said, “Now is a tough time for any young person to start out in the world of work but those who are vulnerable are in danger of being shunned by the work place. The Government has made some headway to tackling the issue of youth unemployment but private and voluntary sector partnerships have a vital role to play in equipping all young people with confidence and skills on their journey towards work. Collectively, we must commit to doing whatever it takes to get young people into work, so that we can look the most marginalised in the eye and know that we are doing right by them.”

Barnardo’s takes part in the Government’s Youth Contract and Work Programmes but also works in partnership with local employers, schools, colleges and charities across the country. The charity trains and supports more than 4,000 young people through its thirty employment, training and skills services across the country every year. The young person does not get paid for his or her short placement because they must be supervised at all times and are not deemed to be ‘adding value’ to the business, but are, instead,  learning and gaining valuable skills and experience from it. Travel, lunch and uniform costs are reimbursed by KFC.

Barnardo’s service user Jamie, 20, who recently completed a work placement with KFC and as a result of his hard work has been offered a job at a KFC restaurant in Manchester said, “I’ve been in and out of care homes most of my life. I could never concentrate in class, and I didn’t get good grades. To be honest I thought I’d never get a job. But Barnardo’s has helped me deal with my problems, and thanks to KFC’s training, now I’ve got a job. I feel proud of myself.”

KFC UK & Ireland Managing Director Martin Shuker said, “Training and development is one of our greatest strengths as a business so we feel this is an area in which we can make a difference. By getting Barnardo’s youngsters into our restaurants, we are not only transforming their lives by giving them vital work experience skills, but we are motivating our own staff and gaining fresh perspectives on our work. We want to encourage employers everywhere to be braver and to give vulnerable young people a fighting chance at getting their foot on the employment ladder.”

The number of unemployed young people in the UK has increased dramatically by 80% in the last ten years and 50% in the last five.

  • Youth unemployment (18 – 24) currently stands at 1,012,000 – close to its highest level since comparable records began in 1992. That’s one in five 18 – 24 year olds who are unemployed.
  • 968,000 young people are currently NEET (16 – 24) – close to the highest since records began in 2000. That’s one in six 16 – 24 year olds.
  • Long periods of unemployment, or moving frequently from one temporary post to another, while people are young, has a ‘scarring effect’ that lasts throughout their working lives.

But the young people who come to Barnardo’s – and many others who don’t find their way there – may have been through and left the care system; may have been victims of abuse; may have experienced homelessness; have been permanently expelled or who may struggle with behavioural or emotional difficulties. This means their chances of finding work are even more dire. KFC and Barnardo’s are urging others to engage in private and voluntary sector partnerships, in order for doors to be opened to disadvantaged young people, to ensure that their fate is not dictated by circumstance.

Do you run a company that could give a young person from a disadvantaged background some training or could speak to your boss about it? If so, please contact Barnardo’s right away and help give a young person like Jamie a chance of a better future.

Tweet them: http://twitter.com/barnardos

Facebook them: https://www.facebook.com/barnardos

Email them here

Parent-carer forums – why not get involved?

As you know, I’m co-chair of Surrey’s parent-carer forum, Family Voice Surrey. I joined at the beginning of the year and realised just how much there was about SEND provision that I didn’t know. Although I was very well informed about statementing, there is so much more that involved complex needs provision, transition planning, vulnerable children and the morass of different funding streams is a jungle in itself.

My co-chair at FVS is Angela Kelly, herself the mother of two sons, both with special needs. Ang and I get on very well and have a very productive relationship. In fact, we’ve just been working hard to launch the new Family Voice Surrey website before we head off on our respective summer hols.

Being involved with a parent-carer forum is something we both feel strongly about as a way of helping other parents in a similar position to find the help they need and to be involved ourselves in shaping local special needs services for families who need them. If you feel like you can offer something, why not get in touch with your local forum? You can find a list here

Recently, we’ve both had to speak at a number of events and drafted a joint speech, which we then personalise with our own experience.  Angela spoke at a Voluntary and Community Services event in Surrey and I thought what she said about her own experience was really powerful and explained why parents who are already under immense pressure looking after their own children with special needs, feel compelled to give up their time to get involved and help others. I’m posting an excerpt here:

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I have been involved in the Surrey’s parent-carer forum for almost 18 months and been involved in the Pathfinder project since November 2011.  I became involved as a result of my own frustrating experiences of the current system. Endless hours on the telephone. Endless filling in forms, endlessly telling my child’s story over and over again.

Being heard but not listened to is one of the most frustrating feelings there is and for this to happen time and time again, when you yourself are exhausted and just about hanging on, well something had to change!

Parent-carer participation is at the very heart of the pathfinder project; it is mandatory. We are central to, and key partners in, the SE7 SEND pathfinder activity and this has been a learning process for all parties involved both parent and professional.  Far from being a lip-service ‘add-on’ or after-thought, our voices are the ones that should be heard the loudest over the noise of politics and officialdom. After all, it’s our children, that we love and worry about every day, who are the point of the whole exercise.

All parent-carers who are involved are a parent or a carer of a child or young person with SEN and or disabilities, so we have a wide range of experience between us of what it is like to live with and try to find the right educational, health and care solution for children with additional needs.  This is what makes parent participation vital, to make sure that any changes to the system actually DO improve support for children with SEN & disabilities which will, in turn, help their parents.

This gives us a unique perspective when it comes to our involvement in the pathfinder. Because of course, we are the ones still caring for our children’s needs, when the professionals have gone home for the day.We aim to bring an informed voice to the discussions for the direction of reforms for the various work streams. This involvement that has helped the professionals see the positive side and the potential benefits to parent-participation.

Two parents from the committee sit on each stream of work that is being tested.  These are, the Education, Health and Care plan, Early intervention / complex needs, personal budgets, the local offer, transition and vulnerable/looked after children who have no parents of their own to speak for them.

My overall experience of my involvement in the Pathfinder has been positive and I feel that as a parent-carer I am able to contribute to shaping the future for SEN and disabled children

Volunteering: The best way to spend your summer

We’re heading off for Italy this weekend and because both boys have special needs, we’ve always rented a villa with a pool and taken their Grandma and Nonno along to help out, so that we can all have a break without worrying about potential public meltdowns.

But imagine if your child has a serious physical illness or disease that makes it difficult to go anywhere without a high level of medical support? Pressure on families like these can be immense and no one needs a break as much as them.

Barretstown, based in Ireland, is a specially-designed camp that provides Therapeutic Recreation programmes for children with serious illnesses and their families. But to make it possible, the camp needs thousands of caring and energetic volunteers every year. My colleague, Rob Pleticha, whose day job is Online Communities Manager for RareConnect at EURORDIS, the European rare diseases organisation, is one of them. He volunteers every year to help children who are living with illness or rare diseases. A short time ago, he spent a week at Barretstown and he’s been kind enough to write for Special Needs Jungle about his experience and the camp.

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You arrive the night before the training. It’s dark but the trees are bright green, the horses are so comfortable, they lay down in the pasture sleeping, and the cabins spread thorough out the grounds emit a warm glow. You sleep well in the Irish night as fresh air fills you.

You’ve come to Barretstown in Ballymore Eustache, Ireland to participate as a volunteer “cara” at an eight-day camp summer session. 120 kids from 7 countries will arrive in two days. They all share the common experience of living with a serious medical condition at a young age.

Barretstown is a member of the European Global Organisation of Serious Fun Children’s Network camps founded by Paul Newman. The five camps in the European network allow over 3,000 children from 26 countries to attend summer camp and have life changing experiences. The services are always free of charge to families.

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The Every Child in Need Campaign – help needed!

A campaign is being launched today (Thursday 26th July 2012) aimed at protecting society’s most vulnerable children from “damaging changes” proposed by the Department for Education.

The Department of Education is proposing wide-ranging changes to the legal framework which protects these ‘children in need’. Although the changes will affect all ‘children in need’ in England and Wales – including all disabled children – they are focused solely on child protection. The proposals are set out in a consultation which runs until 4th September 2012 [details here].

However, a group of charities, campaigners and lawyers, who are today launching :Every Child In Need” say these proposals are wrong-headed, dangerous and will place the most vulnerable children at risk .

The organisations include Maxwell-Gillott SEN solicitors, Ambitious About Autism and child protection charity ECPAT UK. The organisers, between them, work with and reach thousands of children across the country, including disabled children, children who have been trafficked, and others facing challenges such as street homelessness, physical or sexual violence (often gang-related), parental neglect, educational difficulties and behavioural or mental health problems. All of these are children ‘in need’.

The organisers say:

The Department for Education is proposing wide-ranging changes to the legal framework which protects these children.  The Ministers, Michael Gove MP and Tim Loughton MP, say these changes involve cutting ‘red tape’, allowing local authority children’s services departments more freedom to meet children’s needs.  Many local authorities – cash-strapped following swingeing cuts to their budgets – are happy to take this lifeline, which will mean less pressure to act quickly when a child in need comes to their attention.

We disagree.  The legal framework is not ‘red tape’ – it is an essential safety net for children when they are failed by their local authority.  Basic minimum national standards and requirements are essential.  A hands off approach, allowing local authorities to do what they want, when they want, is dangerous.

Even the Government’s own impact assessment (.pdf) recognises this – it accepts that, “there is a risk of negative impact on children if central government is less prescriptive.”  That is not a risk we should be taking.

We believe these changes are wrong-headed, dangerous and will place the most vulnerable children at risk.  Join us and stop these changes.

Although headlined as a consultation about ‘safeguarding’ and ‘child protection’ only, following on from the Munro report, in fact the proposed changes are far wider, impacting upon all ‘children in need’ across England and Wales, and drastically altering the current guidance regarding how local authorities should assess and meet their needs.

Time is short.  The consultation is running over the summer, 12th June – 4th September 2012.  We recognise that the issues are complex and you may have many questions.  We have arranged a campaign and information meeting for Thursday 26th July 2012, to discuss the proposals further and answer any questions.  It will take place at Doughty Street Chambers at 6 – 7.30pm and we very much hope you can join us.

The Department for Education’s wide-ranging proposals are set out here: https://www.education.gov.uk/aboutdfe/departmentalinformation/consultations/a00211065/revised-safeguarding-guidance.  In short, Michael Gove MP and Tim Loughton MP say these changes involve cutting ‘red tape’ and stopping prescription by central government, allowing local authority children’s services departments more freedom.  Many local authorities – cash-strapped following swingeing cuts to their budgets – are happy to take this lifeline, which will mean less pressure to act quickly when a child in need comes to their attention.

We disagree.  The legal framework is not ‘red tape’ – it is an essential safety net for children when they are failed by their local authority.  Basic minimum national standards and requirements are essential.  A hands off approach, allowing local authorities to do what they want, when they want, is dangerous.  Even the Government’s own impact assessment recognises this – it accepts that, “there is a risk of negative impact on children if central government is less prescriptive.”  That is not a risk we should be taking.

The campaign has three central concerns:

(i)            The proposals are based solely upon ‘children at risk,’ but the changes will apply to all ‘children in need’ – a far wider group.  For example, all disabled children are ‘children in need’ but their needs have not been taken into account in the proposals.  There are at least 770,000 disabled children in England and Wales. Why have their needs been disregarded?  How will they be impacted by these changes?

(ii)           The proposals remove national minimum standards for child in need assessments, basic standards which all local authorities must meet.  At the moment there are maximum timescales in place, so that when a child in need is referred to children’s services his or her needs must be assessed within 35 working days at most.  Gove and Loughton are removing this requirement.  We believe that many children in need will be left to languish, without the assessments and services they desperately need – and are statutorily entitled to.

(iii)       The revised statutory guidance proposed in the consultation is hopelessly vague and general, and will not ensure that children in need obtain assessments with a ‘realistic plan of action’.

The campaigners say they are very surprised to see the Department supporting the removal of national minimum standards on the timing and quality of assessments for children in need at this time, when in other contexts they are demanding more proscription and are criticizing local authority decision-making.  They cite as an sample, how Tim Loughton MP recently sharply criticised local authorities for their placement and management of vulnerable young people in children’s homes, and the poor quality of local authority data on such children.

The campaign website is at, www.everychildinneed.org.uk.  Full details of our meeting on 26th July are available at http://www.doughtystreet.co.uk/seminars_events/.

We hope to see you on 26th July.  If you wish to attend please book your place by contacting Doughty Street’s Events Coordinator at 020 7404 1313 or events@doughtystreet.co.uk.

Tourette’s Syndrome – the facts and resources

A condition that is often misunderstood and that is sometimes seen alongside ASD or ADHD is Tourette’s Syndrome. Often inaccurately characterised as sudden, unexpected outbursts of swearing, which is easy to be the butt of comedian’s jokes, Tourette’s is, in fact, a neurological disorder that can affect different people to different extents.

I was interested to learn more about it and I thought you might be too, so I asked Michelle Kelly, Groups Support Officer for Tourette’s Action to write an article for Special Needs Jungle to explain exactly what Tourette’s is and how it’s treated.

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Tourettes Action – Who we are

Tourettes Action is the UK’s leading support and research charity for people with Tourette Syndrome (TS) and their families.

We want people with TS to receive the practical support and social acceptance they need to help them live their lives to the full.

What is Tourette Syndrome?

Lots of people have heard about Tourette Syndrome (TS) but there are still lots of misconceptions about the condition even though we are becoming increasingly more aware of it. Tourette Syndrome is an inherited neurological condition and although relatively rare, TS affects around one in every hundred school children and a total of around 300,000 adults and children in the UK. The condition is characterised by tics which are involuntary and uncontrollable sounds and movement. A common misconception is that people with TS tend to swear uncontrollably but in fact 90% of people with TS do not and their tics are manifested in other ways, whether verbal or otherwise.

The key feature of TS is that tics are uncontrollable and whilst they can be managed or supressed for a short amount of time they will eventually surface. Symptoms tend to present themselves at around about the age of seven and seem to peak at the onset of adolescence, between the ages of ten and twelve. Tics might start around the head and face and might involve blinking, for instance, or touching and jumping. Vocal tics tend to appear a little later on at around the age of eleven and might involve spoken words or sounds, but can also include coughing and sniffing.

There is huge variation in the nature of tics and the extent to which people with TS will experience them. Tics can change frequently and as one tic seems to disappear another may begin. The severity of the tics can change too and an individual may experience them to a differing degree throughout their lives. It is also thought that the tics can be made worse by stressful events and anxiety. If you would like more information about the causes of tics you can click on the link to our leaflet called what makes us tic?.

The good news is that for many children, the symptoms of TS disappear on reaching adulthood but for approximately half of people with TS, the symptoms will persist. Although the condition is chronic and long-lasting, it can be managed and does not have to impair an individual’s ability to live life to the fullest. Some have suggested that doing something as simple as concentrating on an absorbing task has helped to ease their symptoms a little, or even completely. What can make matters more complex, however, is that TS is also linked to other behaviours and co-morbidities such as Obsessive Compulsive Disorder, Attention Deficit Disorder and Autism Spectrum Disorders.

Managing Tourette Syndrome

Many people who have received a diagnosis of TS will not require medication to manage the condition and will not be significantly affected by their symptoms. There are medications that can help, although as is the case with any medication there are also possible side effects which must be taken into consideration. These medications can have success for some people, however, and so it is important to assess the impact on an individual basis. If you want to learn a little more about the kinds of medications that exist you can click on the link to our medications page where you will find lots of helpful information.

Psychotherapy can also help because it can provide practical ways for people with TS and their families to learn to cope with the symptoms of the condition and its impact on daily life. There are behavioural therapies that exist that can help an individual with TS to manage their tics so that they can become more socially acceptable, or in the event that they are causing pain, become less painful. You can find out more about behavioural therapies by visiting our behavioural therapies page.

There are plenty of relaxation techniques that can help to alleviate some of the stress that may be causing the tics or caused by them. The benefit each form of therapy will have will depend largely upon the individual and their own personal preferences but you can find plenty of useful information on our website or by visiting our forum to see what others have to say about their experiences of TS.

Get in touch to find out more

If you are a parent or carer of a child that you think might have TS and you would like to know who to get in touch with, we can provide you with a list of consultants in the UK. If you would like to know what support groups exist in your area then we would be happy to put you in touch. If you would like to contact Tourettes Action please click to visit our contacts page. You will also find plenty of information about events that are happening around the country and details about how you can get involved.

Useful Resources for Schools

Please find links below to our Key Facts for Teachers leaflet and a link to downloadable presentations on Tourette Syndrome that can be used in schools for teacher training and peer awareness.

http://www.tourettes-action.org.uk/storage/Tourettes%20Action%20-%20Key%20Facts%20for%20Teachers.pdf

http://www.tourettes-action.org.uk/ts-presentations

Feed a child with an old phone

Just a heads up about this in case you missed it on the news.

Two meals in my hand

A new campaign has been launched by NetMums and Kids Company to help provide meals for children who are going hungry. This isn’t in some far-flung developing nation hit by natural disasters we’re talking about – it’s this country of our own, that’s been hit by a very man-made disaster. I would like to say how shocking this is, but, with the stories I’ve been highlighting recently, I’m sad to say it’s all too familiar, though no less disturbing.

Imagine being a ten-year-old in the UK. Your mother has left you alone with your younger siblings. You are starving, but she is too disturbed to notice. The neighbours know about your hunger and through the letterbox they throw in biscuits, but are too frightened to alert social services because your mother’s boyfriend might harm them. The biscuits make for a good day, on a bad day you draw pictures of food and swallow the paper.

This is a true life example of the children that find their way to the charity Kids Company where they no longer spend the day alone and hungry but are fed, played with and cared for. They have to go home at night, but at least they can come back the next day. And the next.

But instead of wondering how it’s possible to make a difference, root around in your cupboards for those old phones that you not longer use and take them to your local Orange or T-mobile store.

 The campaign, led my Kids Company’s Camila Batmanghelidjh and the NetMums website want you to donate your old mobile phones because with the help of  Orange and T-mobile, each phone donated is converted into cash to pay for a meal for a hungry child.
I’ve got two phones on my desk that I’ll be donating. What about you?

Place2Be – the charity that makes a lifetime of difference to children in schools

A while ago, I came across a great charity, working across the country to improve the emotional well-being of children, their families and the whole school community. The Place2Be was established in 1994 in response to increasing concern about the extent and depth of emotional and behavioural difficulties displayed in classrooms and playgrounds.

Today, Jonathan Wood, Place2Be  National Manager, Scotland, tells Special Needs Jungle about their work and why it is so vitally important:

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Why school-based counselling support works: Place2Be

You are a busy classroom teacher, juggling the demands of a young family at home with a boisterous class of 8 year olds at school. Your class takes a lot of energy to settle down for work each morning – and at each subsequent break throughout the day.

It’s Monday morning and Amy is in tears again, even before the bell has gone. Recently fostered after a placement with her grandparents ended violently, you have to remind yourself that it is only a year since Amy’s mother died from a drugs overdose. If you didn’t, your exasperation might seep out as you comfort her just enough to get her into class.

Once in there, disorder rules. At the heart of it, two boys are baiting each other. One of them, Sam, is not going to back down. You suspect he is somewhere on the autistic spectrum, as yet undiagnosed – that mix of over-sensitivity and bullishness – and his feelings have been hurt. And Amy’s crying again.

The other children have responded to your presence and start to settle down. So that just leaves Sam and Amy and you to deal with.

How do teaching staff cope with extra-curricular demands of this nature? Who offers them support to ride the emotional roller-coaster that whizzes and plummets through the school curriculum on bad and not-so-bad days?

In Place2Be’s experience, most teachers cope by simply carrying on. Support for the emotional impact of children like Sam and Amy can be hard to come by.

Founded in 1994, Place2Be provides a whole-school service, offering therapeutic and emotional support to children and parents, and on-site consultancy formally and informally to teaching staff. We work with 500 schools across the UK. How would we respond in this situation?

We might expect to meet up with this teacher at break or lunchtime and talk through with her how her morning went. We may suggest strategies for her to support Sam, including that he come and see us in Place2Talk, our drop-in, solution-focused self-referral sessions for children (10 minute sessions at break time). We may bring forward Amy’s session with her Place2Be counsellor, recognising that she is not coping well at the moment. We may simply listen to the teacher.

And indeed, Sam did come to the Place2Talk and together we worked out painstakingly and rationally how he might take control of similar situations and not rise to anyone’s bait. And over the next few weeks, Amy played intensively with the doll’s house in the Place2Be room, in which she installed dolls representing herself, her mum and her grandparents. There were fights and tears, but it wasn’t until a new set of parents moved into a room in the house that Amy’s mum and grandparents could move out, leaving her there. Amy’s foster parents have since applied to adopt Amy, and the tears before class have stopped.

Teachers know that some children arrive at school not ready to learn. But knowing that is not the same as having the time, the resources or even the skills to manage all the issues that children can bring.  This is where a service like Place2Be can make the difference by attempting to provide that responsive space for schools at every level in a direct and non-stigmatising way.

Find Place2Be here

Getting troubled kids riding high with the brilliant Wave Project

While I was doing some research for DysNet, I came across a fantastic project that uses the beautiful Cornish coast to help young people in difficulty. The Wave Project is such a brilliant idea and is a volunteer-led organisation that uses surfing and the sea to improve the emotional health of young people.

Surfing with The wave ProjectIt is a non-profit making community interest company that works with pro surfers and volunteers to inspire and motivate young people who, for different reasons, are experiencing difficulties in their lives.

The charity’s clients include children and young people with mental health difficulties, emotional problems or learning disabilities – as well as those who are simply under lots of stress due to extraordinary circumstances. Its unique 1:1 surfing courses are delivered with support from a fantastic team of dedicated volunteers, who provide motivation, support and encouragement.

The Wave Project is evidence-based, and works with mental health professionals and psychologists to refer clients, and independently evaluate its projects to ensure that they provide lasting and meaningful benefits for its clients.

The surfing projects are all about creating a positive vibe. They are designed to bring clients out of their comfort zone and get them focused. But they also provide an opportunity to give them a fun experience, meet new people and get lots of encouragement.

The Wave Project believes that mental health should not come with a price tag. That’s why all of its projects are free of charge to clients. The charity raises the funds needed to deliver the courses for the young people and use professional services to take referrals. Its funding comes through direct fundraising, grants, trust funding and personal donations. Its backers include the NHS, BBC Children In Need and Cornwall Council.

The charity also depends heavily on its dedicated volunteers who give up their time to support its work with vulnerable young people.

‘They are all amazing beyond words,’ said Project Co-ordinator Joe Taylor. ‘Without them, we simply couldn’t deliver our activities to the standards we have set.’

The charity also recently launched The Wave Project Surf Club. Some of the children who had previously taken part in one of the courses enjoyed surfing so much that they were inspired to set up the club to provide them with ongoing access to the sport.

Joe, who founded the charity, said: ‘This club is the first to be run by and for children who have suffered from difficulties in their lives, and I am lost in admiration for the young people who have taken part.

‘Their ability to confront the difficulties facing their lives and respond in a positive way by launching their own surf club is a statement of how much young people can do.’

The Wave Project only takes referrals from people working in professional services or charities, such as psychiatrists, psychotherapists, counsellors, youth workers, charity organisers and SENCOs; that is how they know that the young people they work with have a genuine need. The charity is always keen to talk to professionals who work with vulnerable children and young people, so please contact Joe for a chat if you would like to refer a client. Alternatively, do so direct through the website using the simple referral form, and someone will call you back. All information about clients is of course managed in the strictest confidence, in accordance with the Data Protection Act 1998.

Volunteers also being sought to take part in the projects. For more information about these opportunities, please email info@waveproject.co.uk. For further information, please contact Joe Taylor on 07584 124873. More information about the Wave Project can be found at www.waveproject.co.uk.

 

Launching DysNet – and how the right education helped one man make a difference, despite disability

For the past two months, in addition to my special needs work, I’ve been working on an exciting project to launch an online community network for people living with limb differences.

DysNet is the brainchild of a dear friend of mine, Geoff Adams-Spink, about whom I’ve written on this blog before. It’s aimed at bringing together people around the world affected by dysmelia (congenital limb differences) to share information, knowledge and resources. Today, Geoff writes about his life for Special Needs Jungle and demonstrates that, with the right support and education, it is entirely possible to live a rich, rewarding and independent life.

From Small Beginnings

First let me declare an interest: Tania Tirraoro the award-finalist writer who hosts this blog is a good friend and a professional contact.  She and I trained together as journalists on the South Cornish coast way back in 1988.  Back then, Tania was vivacious, tenacious and keen to get on.  More than two decades later, absolutely nothing has changed.  Or has it?

Bringing up two boys with Asperger’s has directed her considerable energies into the field of special needs education.  As someone who spent most of his childhood at special boarding schools, she has asked me to share a few thoughts about my experiences and about the current debate about special schools vs. inclusive education.

Geoff Adams-Spink

I was born half a century ago with disabilities caused by the morning sickness drug, thalidomide.  The drug left me with extremely short arms, flipper-like hands and very limited vision in the one eye that I have – the other is completely absent.

Back then, children with physical disabilities were destined for special schools – mainstream either wasn’t geared up or wasn’t prepared to gear up to support us.  My parents were told in no uncertain terms that my safety couldn’t be guaranteed if I attended the same local schools that had served my two sisters and my brother perfectly well.

So, aged five, I was packed off to Penhurst school in Oxfordshire which was run by NCH – now NCH, Action for Children.  I recently revisited the place and found it transformed.  It no longer supports children with the sort of disabilities I have.  All of the students have profound and multiple learning disabilities or PMLD.  The 26 children require intensive support from the 150 or so staff.  The cost of a place there can only be guessed at.

And this has set me thinking about the current debate about special needs vs. inclusive education.  It seems to me entirely ridiculous that anyone should assume that one approach should be adopted exclusively.  If we are, in the words of a former Secretary of State for Education to “respond to the needs of the child” there is surely room for a mixed economy.  Plenty of children – myself included – would probably manage perfectly well in mainstream education with a few minor adjustments.  Others would be left in the margins and need the specialist support of staff who know how to encourage children with different needs to achieve their potential.

This is not simply about physical compared with learning disabilities: two children with, superficially, the same level of impairment could well require different responses from the system.  My nephew, for example, has Asperger’s and managed quite well in mainstream education.  But he has the benefit of supportive parents who have equipped him with the knowledge to know how to regulate his behaviour and manage his condition.  He’s also a big strapping lad who has no shortage of confidence.  Another child with the same level of Asperger’s may well struggle in the same environment.

Is there life after special education?  You bet!  I out-grew Penhurst quite quickly and was sent to another boarding school aged eight.  This establishment had an approach that – at the time – was quite revolutionary: that disabled children (the majority were vision impaired though some had physical disabilities as well) should be encouraged to acquire certificated qualifications.  I left the place after nine years with eight O-Levels and went on to study for A-Levels at an FE college and then on to university.

So how have mine and Tania Tirraoro’s paths crossed again?  Tania is now an expert in the use of social media.  After 22 years working as a BBC journalist, I am now Chairman of a European organisation that represents people with limb difference.  We have an ambitious project to create a global network of those affected by dysmelia (as limb difference is officially known) and to link this network with a knowledge base and another network of dysmelia experts.  Spreading the word using social media is a no-brainer.  And our choice of Tania to establish our social media networks to help us achieve our goal was equally simple.

On Monday May 21, Tania is helping us to launch DysNet – an online community that will help people to conduct conversations in five languages. We’ll have a knowledge-sharing website and a secure community forum on RareConnect, run by EURORDIS & NORD, the world’s leading rare disease organisations.

I wonder whether, when my distraught mother left me at Penhurst for the first time, she had any idea that her son would get so much from his special education.

DysNet Website  | DysNet Twitter | DysNet Facebook | DysNet G+

Advocates For Children – a FREE SEN legal advocacy charity.

The world of special needs is, I have discovered, populated with extraordinary people  – both those who care and do their best for their children and professionals who go the extra mile to provide whatever help they can.

One such lady is Gloria Vessel, a barrister who has for many years carried out pro bono work for families affected by disabilities and SEN. In a decade of helping families at the SEN Tribunal, Gloria has never lost a case.  However, it became clear that she could not take on all the children whose parents were asking for her help so she founded the charity, Advocates for Children. Today, Gloria has written about the charity and its work exclusively for Special Needs Jungle.

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For parents of children with disabilities it really is a jungle out there, especially when it comes to getting the right school, or the right schooling for your child. Parents are faced with a bewildering mass of Codes of Practice, deadlines, and the ever present prospect of having to take your case to a Special Educational Needs Tribunal. Advocates for Children is here to help.  We are a relatively new charity; only three years old.  Our volunteer Advocates help children with disabilities and life-limiting conditions aged 4 – 16 with problems at school.  Our services are free.

Advocates For ChildrenProblems we deal with include getting the right educational support for a child at school, getting the right school for the child,  giving parents advice on where they are going with their child’s case, or addressing the issues of bullying or abuse of children. We believe that when you are helping children one size does not fit all.  No two cases are ever the same, and we know that every child and every family are unique, so we devise help to fit the needs of each family and each child.

Your child is never just a case number to us.  Your child is a unique and special individual that we are privileged to advocate for. It is our policy to see each child that we Advocate for, so that we know best how to help them.  Our central focus is always what is best for the child. We also give advice to parents over the telephone, where they simply have a query that they need some help with.

For many parents we can resolve a problem with one call. If parents want to be legally represented, we can help you to find the right solicitor, and to advise you on what you need to do.  In certain circumstances, we would represent our own clients at a Special Educational Needs Tribunal, however we try as hard as we can to avoid a Tribunal if that is possible. The law is a vital tool for parents to be able to get help for their child, but we urge parents not to see it as a first resort, or as the only resort. So often parents will ring asking about Tribunals, or they are even be on their way to Tribunal, without ever having been told, or having been able to find out, what they actually need to do to give themselves the best chance of success at a Tribunal, or even understanding exactly what is involved.  That is a dangerous position to be in.  Knowledge is power, so we help to give you that knowledge.

It is also amazing how many parents have been told that they need to go to Tribunal without ever having really met with the Local Education Authority to discuss their child’s case.  We can review a case and see where there are areas of agreement, as well as disagreement, and see if a solution can be arrived at by negotiation and not by immediate legal action.  That benefits both sides and benefits the child.  And, if it comes to a Tribunal, the parents will be much better prepared, and will know what they need to focus on.  It really is good to talk! A Tribunal is a legal procedure and the evidence you put forward is vital to your case.  We advise you on what the evidence is that you need.  You know your child inside out, but a Tribunal Panel does not.  They have to decide on what your child is all about by the written evidence in front of them.  So, you need your written evidence to help you make your case.  Of course you can talk about your child, but you need written evidence too.

As a barrister I have the greatest respect for and faith in the legal process, but I also know that the better informed parents are the better equipped they are to make all-important decisions for their children before that process begins. Advocates for Children believes in the dignity of the child.  We champion the legal and human rights of the children we Advocate for and our watchwords are ‘Listen, Respect, Care’. Our Trustees are all Mums and Grandmums who really understand what our clients are facing and that is what we feel is our greatest strength, as it drives all that we do for these special children. Our Mission Statement is; To enable children with disabilities to have the opportunity to fulfil their true potential and have their chance to shine. We are proud to do just that.

http://advocatesforchildren.org.uk/

The lifetime legacy of special needs left by meningitis

I recently met the chief executive of The Meningitis Trust, Sue Davie, and heard her talk about the hidden after-effects that meningitis can leave on children who’ve apparently recovered.  The special needs they have due to acquired brain injury are often missed, but in this guest post, she explains how the illness can leave a long-lasting legacy.

Meningitis strikes fast but its impact lasts a lifetime. It’s a disease that can affect anyone, of any age, however children under five are the highest at risk group. People often think about the mortality rates of meningitis (sadly 10% of people will die) and the physical after-effects of the disease, such as limb loss (where septicaemia has occurred), but what few people understand is that 30-40% of children who survive meningitis will be left with other devastating after-effects. Some of these other after-effects can be hidden and may not become apparent until some years after the meningitis, most commonly causing difficulties at school.

c. Meningitis Trust

At the Meningitis Trust, research we commissioned has provided the scientific evidence to back up what we already knew from the thousands of families we have supported over the years. The research compared children who had survived meningitis with those of the same age who had not had it. Many differences were found, including:

  • Significant deficits across all aspects of memory
  • Poorer executive function – leading to problems with planning and organising
  • 4 times more likely to have mental health issues
  • 5 times more likely to have speech and communication problems

Effectively, as difficult as it is for a parent to hear, their child may well have been left with what is known as an acquired brain injury (ABI) as a result of the meningitis. And there is little or no understanding or even acknowledgment of the impact of ABI on a child’s education. It is like the silent epidemic – inherent damage that may not be seen for years and is an evolving disability. Whenever special education needs are discussed, rarely if ever does it include the needs of those children who “acquired” difficulties.

An excellent publication, “Educating Children with Acquired Brain Injury” by Beth Wicks and Sue Walker highlights why children with ABI have different special needs including::

  • There may be delayed deficits – injury may have been to a part of the brain responsible for skills not required until later in life e.g. a child may appear to be doing well in Primary School, but on transition to Secondary, issues appear as they have problems with their executive function responsible for planning and organising
  • There are often significant discrepancies in ability levels e.g. excellent vocabulary knowledge but lack of organisational skills to formulate expressive language
  • Things that change frequently – they can seem to be learning rapidly at times, other times slow or plateau effect. And they can “grow out” of problems as they recover or compensate for impaired ones
  • They may score OK on conventional tests of intelligence as they have retained previous learning (meaning they are at age-equivalent level), but they gradually fall behind as new learning is impaired

As the impact of meningitis and ABI generally is not understood by those responsible for identifying need, it’s not a surprise that it goes unsupported:

  • As it is often an evolving issue, it does not fit standard SEN systems
  • It is usually complex (i.e. many different facets to it), frequently leading to some individual components being identified but in isolation
  • The cause of the issues may have been years before (e.g. meningitis as a baby) so it is not connected and therefore the root cause not considered (ABI)
  • Generally, teacher training in special educational needs is poor and does not include training on ABI and its impact
  • And the people responsible for assessing children, the Educational Psychologists, have very little understanding and expertise in ABI – and yet they are advising schools.

Alongside families, schools are the major providers of rehabilitation for children with ABI and yet the system that is in place lacks the knowledge of what has happened, its impact and how best to meet individual needs.

A report called “Missing Out” was produced in 2001 by the Childrens’ Acquired Brain Injury interest Group. A number of recommendations were made including around ABI awareness and education amongst teachers and educational psychologists. 11 years on and nothing has really changed.

The Meningitis Trust exists to support people affected by meningitis and we are now fighting on behalf of all the children who have survived meningitis to get them the educational support they deserve. Alex, one of our Young Ambassadors who was 8 when he contracted meningitis said “I thought being in a wheelchair was the hardest part – but I was so wrong. I found myself struggling with work that I could do before with my eyes shut” and he also said “It was not my fault I had meningitis – I still deserve an education”. You can read his story at this link in his own words.

And for parents it is a heartbreaking battle – this is what two mums said:

  • “None of the professionals who came to the meeting about my son had any knowledge of meningitis or the after-effects. I felt like he was just set up to fail. They say education is inclusive ….. not for children who have had meningitis”
  • “Throughout my son’s school life, he was forced to fail before he could get any help and his self-confidence was left in tatters – if it had been an obvious physical disability he may have got the help he needed”.

Meningitis may be considered a “rare” disease but there are over 20,000 children in the school system who have had meningitis and as many as 40% of these may be struggling. But ABI can be caused by many things and if you consider that every year there are over 500,000 children under 16 in the UK admitted to hospital for head injury, and more than 10% of children can have illnesses that can cause ABI (including meningitis) – it means the number of children potentially struggling in education without the support they need because of an ABI is huge. But the system continues to fail them because the impact is not understood – and that cannot be acceptable.

Children who have had meningitis have already had to fight for their lives – they should not now have to fight for their future. Support our campaign today – just go to www.meningitis-trust.org to sign our petition and see how you can help children like Alex.

Footnote:

Knowing the signs and symptoms can help to save lives and I urge you to ensure you have this knowledge close to hand. You can download our free meningitis app at  www.meningitisapp.co.uk, go to our website  or call our 24 hour freephone helpline (0808 80 10 388) and get a free credit card sized symptoms card. Why don’t you order some for everyone you know, your school/nursery etc. Remember, anyone at any age can get meningitis so everyone needs to remain vigilant. Having our information close to hand saves lives – we know because many people tell us.

If you have been affected by meningitis, you do not need to suffer alone, The Meningitis Trust helps people to move forward, providing free emotional, practical and financial support – just call us on 0808 80 10 388, email us at support@meningitis-trust.org or go to our website www.meningitis-trust.org. Or why not join our Facebook or Twitter

Real tips from real carers – a new tool from NetBuddy and NHS Carers Direct

Netbuddy has been working with NHS Carers Direct to pass on practical advice, tips and ideas from carers of people with learning disabilities to other carers.

‘Real tips from real carers is a new tool created by NHS Carers Direct and Netbuddy. It offers a selection of tips submitted by carers under four separate headings – Communication, Healthcare, Personal Hygiene, Behaviour and Routine.

The tool is live on the Carers Direct website and a version of the tool is also available for people to put on their own websites.

Netbuddy director, Deborah Gundle said: “We are so pleased to be working with Carers Direct to share these great practical ideas from people with everyday experience of caring for people with learning disabilities. Working in partnership with other organisations like Carers Direct allows us to reach more carers who can benefit from Netbuddy. We really hope more people will come forward and ask for the ‘Real tips from real carers’ widget on their website.”

Carers Direct website editor, Rob Finch, said: “The best advice comes from experience. Netbuddy is an amazing way for carers to get the benefit of the experience of others in similar situations.
“The tool that Netbuddy and Carers Direct has created is a really simple interactive gizmo that could help share dozens of these great tips with a wider audience of carers. We hope that these tips will make real changes the lives of carers – and the lives of those they support.”
You can find top tips for helping children with SEN and disabilities at the NetBuddy website. You can also offer your own tips as well!

Kosovan special needs parent group appeal

A Kosovan special needs parent group has been in touch with the UK website Netbuddy, looking for help. They are asking for donations of special needs related items, so if you have got anything you can spare that you think might be useful, please send it to 7 Wildwood Road, London NW11 6UL by 2 March or drop it off in person to the same address on either 19 or 26 Feb.

One to One Childrens Fund, which is a UK charity working in Kosovo, will take your offerings there for us. This is an opportunity to help families and carers like ourselves, who are managing with far fewer resources and very little support. Please help!

Items that would be of use include:

* Sensory and cause and effect Toys * Adapted Toys * Clothes * Toiletries * Glasses * Adapted Cutlery/cups/plates * Adapted clothing * DVD’s * CD’s * Waterproof Mattress covers * Bibs * Feeder aprons * Sleep suits * Changing mats *

Anything else you can think of gratefully accepted!

Many thanks,

Emma and the Netbuddy team

A new SEN Advice service from Contact-a-Family

Contact  a Family, the national charity that helps support parents with disabled children has launched a new SEN National Advice Service.

This service will help families whose child may have special educational needs – we will be able to provide advice and information on any aspect of their child’s education. Help is available through their helpline 0808 808 3555, or post a query on Facebook or Twitter and a SEN adviser will get back to you. Alternatively drop us an email: helpline@cafamily.org.uk.

The service is available for anyone who thinks their child may have special educational needs – whether or not they have a disability or has already been identified as having SEN.

The Contact A Family Service can advise on:

The SEN process – including:

  • Early years
  • School Action and School Action Plus
  • Individual Education Plans (IEP’s)
  • Statutory Assessment/ Statements
  • Annual Reviews
  • Transition planning and education after 16
  • Appeals

Other general education issues as they affect children with SEN, which include:

  • Transport to school
  • Bullying
  • Exclusion
  • Medical needs in school
  • Attendance at school
  • Home Education

You can find out more about the service and Contact A Family in general here: http://www.cafamily.org.uk/families/SEN.html

IPSEA – A wonderful charity for free advice and support for SEN

In my book, Special Educational Needs, Getting Started With Statements, I make several references to a special educational needs charity called IPSEA.

IPSEA provide free advice and support for people who have children with SEN and offer an invaluable service. Today I am delighted to have a guest post from the charity’s Chief Executive, Jane McConnell

Jane McConnell, Chief Executive of  the Independent Parental Special Education Advice charity or IPSEA, became an IPSEA volunteer 10 years ago. She has been a paid IPSEA staff member for the last 7 years and has a 12 year old son with complex SEN. Jane has overcome several substantial hurdles to get the right education for him and has firsthand experience of what thousands of parents have to go through. Here, she explains what IPSEA are all about and how the charity can help you:

What is IPSEA?
IPSEA is a registered charity providing free and independent legally based advice for parents whose children have SEN / disability. We have been supporting parents since 1983. IPSEA covers England and Wales. We use highly trained volunteers to deliver all our advice and support. We offer more support to the most disadvantaged families. A small team of paid part time staff co-ordinate and train our volunteers.

What does IPSEA do?
IPSEA advises families whose children have all types of SEN / disability, including behavioural problems, communication difficulties, learning disabilities and autism. IPSEA often helps families before their child has even been diagnosed. IPSEA’s legally based advice gives parents the confidence to exercise their rights. This basic understanding of the law equips families to be more involved in the decisions that affect them and helps them to avoid future issues. IPSEA helps around 3,000 families each year – thanks to our dedicated volunteers and supporters.

How can IPSEA help me?

IPSEA offers parents the following free services:

Common problems

Many simpler and common issues with the SEN system can be resolved with the help of IPSEA’s on-line resources:

What parents say about IPSEA

Our website has quotes from parents we have helped. We survey the parents that have used our services to ask them for feedback. Their feedback helps us improve our services and secure the funding we need to keep them going.

Using parents’ experiences to influence change

IPSEA gathers evidence and uses it to lobby for changes to current legislation. We also attempt to correct the practices of local authorities whose policies are not in line with legislation.

1,039 people took part in our SEN Green Paper survey. 796 of them were parents of a child with SEN. They agree with IPSEA’s strong belief that parents’ views need to be listened to and respected by the professionals responsible for assessing and educating their children. Without this basic respect, mistrust builds up. This can have a detrimental effect throughout the child’s education. IPSEA’s full response to the SEN Green Paper proposals is here .

IPSEA works constructively with the government. We were particularly pleased that the new administration activated the right of parents to make an appeal to the SEND Tribunal if their child’s Statement did not reflect the needs of the child.

We gave evidence to the parliamentary education committee on the SEN Green Paper. We also successfully campaigned to protect legal aid for SEN appeals.

Keeping IPSEA going

It costs IPSEA around £30 to provide telephone advice to a family and around £300 to provide a tribunal caseworker. We appreciate all the donations we receive. You can donate using PayPal or debit/credit cards. You can also set up regular donations.

IPSEA is always looking for more volunteers. You need to complete our training first. This training is very thorough so we ask you to commit to actively volunteering with us for at least 2 years. “I enjoy the feeling of empowering parents – talking them through their problem and sending them off with a clear plan of action” says one of our experienced volunteers.

New website to increase SEN charity awareness

Today, I have a guest post from Martin Peel, who has launched a new site highlighting SEN charities.

“We have recently launched a new website, www.sencharities.org, to increase the awareness of Special Educational Needs charities within England, Scotland and Wales. There are more than 200 such charities in the UK, many of which were established by the parents of children with Special Educational Needs.

Typically these charities are small in size and often run by dedicated groups of volunteers. Finding support for your child with Special Educational Needs is not always easy, often resulting in the question “Who can I turn to for help?”.

These charities provide a first point of contact for this help and by increasing awareness we hope that this will result in additional donations to aid them in their work. For more information about the website please email sencharities@live.co.uk or phone 07833 088202.

We are very grateful to our website sponsor, SpaceKraft of Shipley, West Yorkshire (www.spacekraft.co.uk) who are part of RM plc. Over the last 19 years SpaceKraft have designed and installed more than 3,000 Multi-Sensory Environments for children with Special Educational Needs.

www.sencharities.org has been developed by Health Charit Ltd, a not for profit fundraising company for health charities. For more information about Health Charit Ltd please go to www.healthcharit.org, email martin.health@live.co.uk or phone 07833 088202.

SENAC for Special Needs Advice in Northern Ireland

If you’re in Northern Ireland and you’re looking for help with getting your child the special educational needs support they require, there is a service for you. The Special Educational Needs Advice Centre, or SENAC,  is a regional charity set up in 2003.

They provide FREE independent advice on behalf of children and young people with disabilities and special educational needs (SEN) attending schools in Northern Ireland up to the age of 19 years. SENAC offers  information to parents and carers on all aspects of the statutory framework of SEN provision in Northern Ireland.

SENAC also offers an individual advocacy service for children and young people and work with parents to facilitate positive communication with schools and assist them to make more meaningful representations of their child’s needs.

SENAC OFFERS:

  • An independent and confidential telephone advice-line service, providing advice and information to parents/carers at all stages of the process for the Assessment and Statementing of Special Educational Needs.
  • Written information and guidelines on the Assessment and Statementing procedures both on this website and in print on request.
  • Assistance to parents in understanding policies and procedures in relation to their child.
  • Information on contacting other relevant organizations.

SENAC operates an Advice Line on 028 9079 5779. Further information can be obtained from their website www.senac.co.uk

What do parents of a newly-diagnosed child need?

I recently attended the launch of Family Voice Surrey, the new local forum for parents and carers of children with SEN and disabilities in Surrey. It’s part of the National Network of Parent Carer Forums and aims to give Surrey parents a voice in the policy and decision making process for disability and SEN services.

As part of the table discussions we were asked to identify the top three challenges facing families with children with disabilities and SEN in the county. When each table’s facilitator stood up in turn and read out their lists, almost every table had identified the same issue – information and support after diagnosis.

Everyone agreed that was is needed is an independent support worker who had all the answers to the questions that a diagnosis sparks in parents. This includes where to find information about assessments, financial assistance, support groups, access to services and education about how to help their child and so on.

When your child receives a diagnosis of any illness or condition, it is a very distressing experience that can also feel very isolating, especially if you do not know any other parents in your position. It can also, at the same time, be a relief that you were not imagining these symptoms and that you now have a name for the problem. This is particularly true when the child has a hidden disability such as Asperger Syndrome or ADHD. For a while, parents need to take stock, maybe reassess their hopes and expectations for their child. Perhaps they also need to grieve.

But then comes the stark reality that they have to take action to help improve their child’s life chances – and that means finding accurate information and at a local level – who is a good paediatrician, which are the appropriate schools, does my child need an assessment for a statement and how do I go about that? How do I find out about occupational therapy or speech and language therapy?

There are lots of great volunteer organisations out there, but the problem is finding the ones that are right for you and your family. So, what is needed is someone who can be sympathetic and knowledgable and who can act as a support and a signposter, maybe even an introducer to that the family needs.

So, who can provide such a service? Who will fund it? These are two good questions – maybe someone reading this post has an answer. If you have any ideas how  this can be achieved or what else a newly diagnosed family might need, please leave a comment…

About SOS!SEN, a fantastic SEN charity

SOS!SEN is a small charity based in Middlesex that offers a fantastic service to parents who are trying to secure the right educational support for their children. It was started by a small group of individuals who had spent much of their lives in education or related services. They now have a team of volunteers made up of parents and friends who have children with special education needs. They deal with an ever growing number of cases, including representing parents at the SENDIS Tribunal.

SOS!SEN have a telephone hotline and lots of useful information on their site. They are well-versed in the tactics of local authorities and during 2009, the SOS!SEN helpline fielded 6,000 calls. About 30 per cent were new referrals.

They offer a free, friendly, independent and confidential telephone helpline for parents and others looking for information and advice on Special Educational Needs (SEN). We concentrate on helping people to find their way through the legal and procedural maze which is so daunting to so many who try to obtain satisfactory provision for a child’s special needs.

Their aim is to empower parents and carers, and to encourage them to become sufficiently confident to tackle for themselves the obstacles and difficulties that arise in battling for SEN rights. In turn, they hope they will use their knowledge and experience to help others.

They offer our services throughout England and Wales and run monthly walk-in advice centres in Twickenham, Thornton Heath and Aldershot, so that parents from surrounding local authorities such as London, Surrey, Hampshire, Kent and Middlesex can come to see them, if they have a particularly complex problem.

They are also launching a series of workshops that will be very useful for parents to attend about the various stages of statementing.

If you are on the statementing road and you encounter problems, do get in touch. The workshops mentioned above will help get you started as well.

New Foundation Launched to Support Children with Special Educational Needs

A new foundation which will enable practitioners to join together to provide multi-disciplinary specialist services for children with special educational needs is being launched next month – and could transform the present fragmented and bureaucratic system.

The Clarity Foundation hopes to attract health and social care providers, as well as education specialists, to join as members who can be referred to families and local authorities as approved providers meeting statutory guidelines.

The foundation is the brainchild of speech and language therapist Janet O’Keefe and Robert Ashton, best selling business author, social entrepreneur and campaigner, who are passionate about providing a new joined-up efficient system which supports children and their families with educational support, while at the same time eliminating unnecessary duplication and bureaucracy.

It will be launched at a conference entitled, Towards a Positive Future, aimed at parents and professionals, to inspire, share experiences and discover how they can achieve more for children with special needs. The conference is being held on October 14-15 at Arlington Arts Centre, Newbury, which is based at the Mary Hare School for deaf children.

There are currently 1.7 million children with special educational needs in England who require support for wide ranging conditions, from dyslexia, dyspraxia and Down’s syndrome, to autism and attention deficit hyperactivity disorder.

Janet says: “We believe that having a one-stop shop is the best way to enable parents and local authorities find all the support services desperately needed by children with special needs, and that our foundation is the most practical and efficient way of ensuring that those services are integrated and coordinated. We need to bring practitioners from health, education and social care together and plan for the future while the present guidelines for new contract arrangements is under review. Our foundation will be a valuable database of all heath and social care providers, as well as education specialists.

“Additionally, we can streamline time consuming and expensive administrative processes. For example, we can help with criminal bureau checks and professional indemnity insurance. At the moment, if a practitioner is not directly employed by a school or local authority, every school they visit should conduct its own CRB check. Many practitioners regularly visit 20 schools a week sometimes in several different counties and are therefore checked 20 times.”

Robert says it makes good sense to become more efficient during the present shake up of these services:

He says: “However you feel about the Government’s “Big Society” agenda, the fact is that the worlds of education, health and social care are undergoing massive change. The Clarity Foundation is being formed to help parents make sense of those changes, and in parallel to help practitioners create their own enterprises. That way both groups can connect, create opportunities and meet the needs of young people striving to overcome disadvantage.”

Specialist speakers include educational psychologist and former head teacher Charlie Mead, who has worked with children with severe emotional and behavioural problems and special needs for 20 years. He has grave concerns about the present system and highlights failures he has observed, leading to neglect in some cases for vulnerable young people.

He says: “Charities are afraid to stand up for their clients in case their funding is withdrawn. Academies are afraid of further failure by taking on exactly those students who would benefit most from their resources. Children and Family Services have neglected the vulnerable due to bureaucratic inertia and a lack of consistency. All these situations can be changed if the interests of the child are put first.

“When working with highly vulnerable children in care, many of whom have been sectioned, it is clear that the recession is having a considerable impact on the young people and their families – especially those who cannot cope emotionally, are addicts, are sexualized early and have been abused. They need expert consistent provision – not piecemeal services from organisations who are threatened by lack of funding.”

Other key speakers are Kevin Geeson, CEO of Dyslexia Action, who will highlight the impact of the SEN Green Paper; speech and language specialist Prof Heather van der Lely, who will highlight her simple test for an early diagnosis of specific language impairment; and both Sandy Burbach and Alex Kelly, who will describe the importance of developing social skills and self esteem in children.

Janet is also launching a book she has edited at the conference also called Towards a Positive Future which includes stories, ideas and inspiration from children with special educational needs, their families and professionals.

Full details about the conference can be found at their website, Towards a Positive Future:http://towardsapositivefuture.wordpress.com/

There is a range of ticket prices: parent £90 (one day) £155 (both days); second parent £60 (one day) £120 (both days); professionals £200 (one day) £385 (both days).

Source: PRWeb

 

The Disney Channel & Aspergers

My eldest son, who has AS, likes to watch the Disney Channel. My younger son, who also has AS, derisively calls it ‘Disney & Ketchup’, likening it to fast food that’s all the same (he has a point). But then, their AS presents very differently to each other – that’s the thing about Asperger’s – no two people have exactly the same symptoms which is why it can be so hard to diagnose.

I believe that Disney programmes such as Shake It Up, Wizards of Waverley Place, iCarly and Sonny With A Chance, can help people with AS develop their social awareness.

The Disney Channel offers very moral programmes. They teach right from wrong, model behaviours, discuss social dilemmas and show conflicts that are resolved by taking the right course of action. Most of all, they’re not subtle and are over-acted, so are easy for a child with AS to get to grips with, without confusion.

They portray young people who are integrated with the world and their surroundings, who relate well-and sometimes not so well- to others, often in an overblown way, which is good when you can miss subtle cues. They show the cool kid, the bully and the nerd and hold mirrors up to their behaviour enabling their traits to be magnified in a way that is easy for a child with poor social understanding to comprehend.Sometimes bad things happen to the central characters and we are shown how they deal with it and get through it. Sometimes, to me as an adult, it can seem puerile, but it’s that simplicity that works on a level that gets the message across.

While it wouldn’t be a great idea for a child to copy the actions of the characters exactly and over-act in real life (a danger in a child with AS), it is possible to use these programmes to discuss why certain things happened, why certain reactions were shown or why particular misunderstandings happened.  While real life isn’t as clear-cut or sugary as Disney life, I think it is possible to use the programmes as a learning tool for exploring social situations and to apply the lessons learned by the characters in the programmes to every day situations.