Wednesday, 20 June 2018

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childcare-affordability-trapsocialmedia 499x635While many parents with disabled children juggle jobs with complex care arrangements against the odds, too often they are forced to cut hours or give up careers due to childcare problems.

Although there is a noticeable political focus on childcare more generally, the issue of childcare for disabled children remains neglected. 

Contact A Family are asking you to help them improve the Childcare Bill by writing to you MP.

Contact a Family want

  • Disabled children to be able to access childcare that helps them to progress, learn and make friends, and enables their mums and dads to work as much as they want.
  • The cap on eligible childcare costs for disabled children via tax credits and Universal Credit to be lifted to £300.
  • No disabled child to be stopped from accessing their free early years entitlement at two, three and four years of age.
  • Childcare providers and local authorities to work together to offer good quality, flexible childcare for every disabled child.
  • Information to enable families to make choices about the childcare available to them locally that meets their individual needs.


To find out more about their campaign and how you can write to your MP please visit their web site:

http://www.cafamily.org.uk/get-involved/campaigning/childcare/

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Are you thinking about buying a gift for a child or young person with sight loss this Christmas but aren’t sure what makes a suitable present? Blind Children UK has created handy guide with lots of ideas to help get you started:

Babies and Toddlers 

Babies with an eye condition may need encouragement to reach, to explore and to understand the world around them. You may want to think about:

  • Moving parts that are fun to wiggle, switch, pull or press.
  • Sound – bells on socks, crackly fabric, rattles, musical tunes.
  • Texture – different fabrics, dimpled or squeezy toys.
  • Bright contrasting colours or black and white contrast. 
  • Tactile books and audio books.
  • Toys with lights, (depending on the eye condition and child’s needs)
  • Ways of organising toys i.e. a soft ‘toy bin’ or ‘treasure basket to help toddlers find things

Pre-school and Primary school

Children know their own minds and develop their interests and hobbies as they grow. Depending on what they enjoy, you could consider:

  • Accessible ways of reading for example CustomEyes large print books or aCustomEyes gift certificate.
  • Toys to play with other children for example accessible board games.
  • Introducing accessible technology. 
  • Sports or outdoor equipment for example foam balls or balls with bells inside.
  • Accessible equipment for hobbies like baking or crafts; for example talking devices, bright colours, colour contrasts, possibly large print ‘how to’ books.
  • You could make standard toys and games more accessible by adding tactile elements or large print.

Teenagers

Teenagers generally have very specific likes and dislikes. But why not try:

  • Favourite foods i.e. a big box of chocolates. 
  • Some scented body spray and shower gel.
  • Encouraging physical activity with fashionable workout gear or membership to a suitable sports club. 
  • Technology gifts for example nice headphones, a charger, music or audio book download gift cards.
  • A gift card for a clothing store they like, and maybe offer to go with them on the shopping trip.
  • Encouraging independence for example cooking equipment and support to use it safely, a bus or train pass after they’ve learnt travel skills.
  • Experiences together – a day out doing something new.

Lisa Petrie from Blind Children UK works with children who have sight loss as well as those with additional complex needs.

She said: “I get asked about this all year round and my main advice to someone buying a present for a child with sight loss, is keep it simple. It doesn’t have to be anything fancy or expensive, it could be something like a treasure basket filled with household items.

“Natural fibres are good, as opposed to having everything in plastic, and it’s good to go for harder sometimes rougher materials. Often it’s the softer materials that children dislike because they can’t really get hold of them and they just tickle.

“Another tip would be to think about cause and effect toys where you turn or press something and something happens, and things which involve music are always good.”

For more information please see the gift guide infographic or call 0800 781 1444 or email: services@blindchildrenuk.org

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Families with disabled children who get:

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

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

The disabled child’s premium is an extra amount paid if a child counts as disabled, and should be listed on the award notice.
We are urging families to contact their energy supplier as soon as possible to apply under the broader scheme as awards are given on a first-come-first-served basis.

Please click on the following link  Help With Fuel Bills and Keeping Warm

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Dynamite are having another one of our pizza evenings where young people get to have a say on how services for young people should be run for young people in Portsmouth.

Anyone can attend as long as they are aged 14 to 25, have a disability or special educational need and use services in Portsmouth.

At the event we will be talking about ‘employment’.

We will be talking in groups about what we think would help young people with a disability to find work.

There will also be a chance to meet some of the people who help young people in Portsmouth to find jobs and to ask those people questions.

The event is free and there will be free pizza for everyone attending.

Click on the link below to see an invitation with full details.

pizza-eve-invitation.pdf

 

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Please make sure that if your child has a learning disability it is flagged on their electronic record with the GP. This will enable your child to be called for their annual health check from the age of 14.

People with learning disabilities often have difficulty in recognising illness, communicating their needs and using health services. Regular health checks can detect treatable illnesses and help prevent more serious ones, as well as familiarising the young person with the GP practice which they may use throughout their adult life.

There are over one million people of all ages in England who have a learning disability.  Only 200,000 of these currently appear on GP registers.  Nearly one million people are missing from this register and not getting the health check to which they are entitled.

Health services have a duty to make changes to their services (reasonable adjustments), so that they are easier for people with learning disabilities to use. Unless a patient’s learning disability status is registered on the GP systems then reasonable adjustments to care for that individual cannot be anticipated and made. People with learning disabilities have poorer health and die at a younger age than the rest of the population, but some of this ill health is preventable.

The benefits of being on the register are:

  • Better and more person centred health care for those individuals;
  • Better information about the health needs of people with learning disabilities in a given locality;
  • Better planning of health and care services for people with learning disabilities;
  • An ability to anticipate an individual’s needs before they attend health or care settings;
  • Better understanding and integration of needs across health, care, education and employment; and
  • Better transition planning for young people with learning disabilities who are leaving school or college and approaching adulthood.

Please see the draft letter which can be adapted and sent to your GP.  Alternatively you can ring up and ask that your child’s learning disability is flagged on their electronic medical record. 

Please note that not all GPs have signed up to deliver the annual health check from the age of 14 but it is worth following up with your GP to make sure the ongoing health needs of your child are anticipated. 

The following weblinks contain more information on the annual health check for people with learning disabilities.

NHS Choices: http://www.nhs.uk/Livewell/Childrenwithalearningdisability/Pages/AnnualHealthChecks.aspx

Public Health England – Improving Health and Lives: http://www.improvinghealthandlives.org.uk/projects/annualhealthchecks

Mencap leaflet on what the health check should consist of:

https://www.mencap.org.uk/sites/default/files/documents/Annual_health_checks_Standard.pdf

Do not assume that your GP will have automatically registered your child on the learning disability register.  Contact them now to make sure that our children receive the best possible health care now and in the future.

Parent To GP Letter - Please download here: Parent-to-GP-Letter.docx

 

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I expect you have heard on the news of the government’s plan to make cuts to Tax Credits. For many parents I meet these credits are the crucial to maintaining their standard of living which makes working worthwhile.  Contact a Family, the national organisation which supported Parent Forums/voices all over the country have a petition which they have asked us to promote. If you or anyone you know is going to be affected should these changes go ahead please use this link to sign the petition.

Take action against tax credit cuts by signing the Contact a Family petition: bit.ly/1PthLlL 

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It's that time of year again when we are all starting our Christmas shopping and if you are a parent of a child with additional needs being able to involve them is even more of a challenge. The bright lights the noise; the people rushing about can be far too much for them to deal with (a sensory invasion) however, giving them a chance to choose presents for their siblings and friends is important.

This Sunday (15th November) from 10 – 11am Toys"R"Us in Portsmouth  are opening early to enable families with children on the spectrum an opportunity to shop in more relaxed setting. The lights will be dimmed, there will no music playing and staff will have been advised and trained to deal with situations in a more suitable way. This will be a great opportunity to shop in the peace and quiet and ensure your children can share the experience.   

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Next week is Anti-Bullying week (16th - 20th November) and its purpose is to raise awareness of bullying and to help stop it.

Bullying can take many different forms and can take place in school, travelling to and from school and even in the local neighbourhood. Verbal bullying can be just as damaging, if not more damaging than physical bullying.  Why?  Because it really attacks us mentally.  Name-calling, constant teasing, abusive comments can all have a long-term impact. 

Bullying can result in the victim having a low self esteem, poor school performance, depression, increased feelings of isolation, even thoughts of self-harm. Bullying is not just a problem for a minority of children; it is a widespread problem that can upset and disrupt a child's emotional, physical and intellectual development. One of the biggest reasons bullying isn’t tackled is because victims are too scared to speak up.  Bullying is a serious issue that should be challenged and the more it is, the better chance we have at beating it!  Bullying is deliberate and almost always a repeated behaviour; sometimes carrying on into adult life.

BullyingUK have provided some advice for parents about bullying; it covers lots of issues such as:

A guide to dealing with bullying  for parents of disabled children Front page Page 01If you are worried that your child may be being bullied the Anti-bullying Steering Group published a guide for dealing with bullying for parents of disabled children. The guide contains information about spotting the signs of bullying, the action you can take, your child’s rights and stories and tips from other parents.

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Some of you Person Centred v 3will have heard of the new Education Health and Care Plans (sometimes called EHCPs) which replace the old system where young people had a Statement or an LDA. 

If you are going through the process of getting an EHCP then it is important that you understand that process so that you can have a say in what goes into your plan.

There is information on our website but sometimes its better to hear about EHCPs in person. There is a joint event on the 19th of November at the Frank Sorrell Centre from 5pm - 6:30pm where there will be some short talks and then an opportunity to ask any questions you have about EHCPs.

Everyone is welcome.

 

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The Deputy Director for SEND, Stuart Miller, took over the role shortly after the reforms were implemented. Stuart's job is to ensure that the reforms are accomplishing what they were intended to - to ensure a better experience for children and families, to better identify those with a special educational need and ensure they are given the right help and to make sure that local authorities understand and are implementing both the legal and cultural aspects of the reforms.

There's no doubt that this is a huge task, particularly as many families have found the transfer from statement/Learning Difficulty Assessment to an Education, Health and Care Plan has not exactly gone according to plan.

Tania from the Special Needs Jungle was recently invited to meet Stuart at the DfE recently to share some of the SEND experiences that parents have told them about and how SNJ see their role as ensuring that the voice of the parent gets directly to those in the decision-making positions. Stuart has agreed that he and his team will answer the top ten most frequently asked questions that parents send in. 

The SNJ are asking you to submit your questions to them and they will then collate every question asked in order to get the top 10. Each person is able to submit up to three questions via their online form. You have until Sunday 15th November 2015 to ask your questions. To get involved please visit their webpage http://www.specialneedsjungle.com/ask-the-dfe-put-your-send-queries-directly-to-the-man-at-the-ministry/

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