Category Archives: Help and information

Being a working mum

E smiling with a hat onGuest post from Sonia, a single mum to a 10 year old with cerebral palsy. She’s started a blog for families of children with additional support needs

Victoria Beckham talked about the difficulties of being a working mum and though we’ve nothing else in common, I can empathise with her on that.

My bright, articulate, humorous daughter has cerebral palsy and needs help to sit, stand, walk and with all aspects of her personal care.

I’m a single mum and really had no experience or expectation of disability before my daughter was born so not working was never on my radar. Here are some of the things that have helped me to be a working mum:

A supportive workplace

I changed career four years ago and now work full time as a teacher. During term time is a full time job but the school holidays help make it manageable.

From day one in my current job, I have been upfront and open about the difficulties of being a parent of a child with disabilities. I don’t believe I get treated any differently from another employee who has children but I think I am more conscious of my different needs.

There are some things that just can’t be arranged outside school hours. The big one being school review meetings. Yes I still feel awkward asking for the time, but my workplace are very supportive and I’m never in any doubt that the time will be allowed.

Our nanny

To be honest, without our nanny, I couldn’t work at all.

Having a nanny means that I can ensure specific things get done. Yes she is able to work through a weekly physio programme and attend appointments and home visits for equipment, support clothing measurement and the like. But as a nanny rather than a care assistant, she is able to support the social side of childhood, creating opportunity to cement the friendships my daughter makes.

I got my nanny through and agency and she’s been with us for seven years. We’ve been able to do all the moving and handling training and assessment on the job as my daughter’s needs changed. I also ensure that she is invited to all of the therapy and review meetings as when working, she is effectively me.

Communication

If you have a child with additional needs then you will have your own long list of therapists, specialists and consultants that are involved in the care of your child. When writing my blog, I started to make a list of everyone we see and I realised just how challenging trying to juggle them all could be.

I cope in two ways. Firstly I’ve made sure they all know my working arrangements and secondly I write things down.

All the therapists know and understand the situation. So they are happy to communicate by e-mail and will always offer home appointments at the end of the day and start blocks of treatment during school holidays. This runs like clockwork to be honest.

Consultants again once the situation is accepted, recognise that we can’t come every three months to a Monday morning clinic. Again this is currently running really smoothly to the extent that when an appointment was rescheduled, they specifically only offered dates in the school holidays.

Tracking and planning

You can’t keep all the dates and information in your head, or at least I can’t.

I have a smartphone to deal with e-mails as they come in and a Filofax for everything else. The Filofax is used for appointments, therapy tracking, recording concerns between appointments and creating agendas and tracking actions from meetings/appointments. It’s always there for the nanny to see and use too.

Read Sonia’s blog, All Born In. If you’re a working parent, what things have helped you?

National Transplant Week

Guest post from Lauren Britton

Andrew and LaurenSix months ago my husband caught a virus which slowly destroyed his heart leaving him unable to lead a normal life.

The last six months have been extremely difficult for us to come to terms with his disability after being so fit. The Scope website was extremely helpful in offering advice on financial help and benefits, and support for myself as a career.

He now needs a lifesaving transplant.

Being an organ donor saves lives. Three people a day will die waiting for an organ.

National Transplant Week runs  from 8 – 14th July and the NHS have launched a campaign to encourage people to register for organ donation.

It’s also really important that people talk about their wishes with their family.  Research shows that without this conversation only 40% of families agree to the donation should they be in that situation, but with it 90% of families agree.

It is very easy to become a donor, and only takes a few minutes you can text DONATE to 62323, call 0300 123 2323 or go to the Transplant Week website for more information

To help the campaign I have made a film to raise awareness about organ donation.

My son tried to cook dinner and drive my car in middle of night!

They really take it out of you. But imagine if you were woken most nights because your child just can’t sleep. It’s a problem that many parents of disabled children talk to Scope about. Here, Helen from Peterborough describes her son’s nocturnal adventures – and how our Sleep Solutions programme is putting an end to their sleepless nights.

Sleepless nights.

My son is 10, almost 11, but he thinks he’s about 35!

Luke has Down’s syndrome. He’s full of beans and has no fear of danger.

Luke used to sleep well, but when he changed schools last September he missed his old friends and I think the change in his routine must have unsettled him. He has no problem getting to sleep, the problem is that he wakes up fully alert in the middle of the night and gets out of bed. This could happen four or five times a night. Once he’s awake, he gets bored.

That’s when the trouble starts

Once, he got up at 4am and tried to drive my car. I didn’t hear him open and shut the front door or get into the car. Luckily a neighbour noticed – he just happened to look out of his window and saw my car with all the lights on.

Another time, he almost set the house on fire. I woke up to hear a strange clicking noise, opened my bedroom door and saw Luke sitting on the landing. He had the fire lighter and he was transfixed, looking at the flame as he burnt the tassels at the end of a wool rug. As I carried it downstairs, the rug caught fire. I was in total shock.

That was the wake-up call for me. I realised I had to do something to help Luke sleep before he hurt himself or someone else.

Support from Scope

Sleep Solutions was such a great help. The beauty of the sleep team is that they really do care – you can just tell they do. They take time to get to know you and your child which helps them establish the specific sleep problem and how to treat it. You don’t get that level of support from a book; it’s the human contact that makes all the difference. They gave us a routine for bedtime, which is surprisingly difficult to achieve. Sometimes, it’s basic stuff that you already know but having support from Scope’s sleep practitioners makes it easier to put into place.

Our sleep practitioner came to our house and got to know us. She looked at Luke’s bedroom and how it’s laid out. We realised that Luke often gets cold in the night because his single duvet slips off, which wakes him up, so I brought him a queen size duvet and also got him some black out curtains.

Scope told me about foods which contain melatonin from a brain chemical called serotonin which can trigger sleep. I took this information and started doing some web research, there’s loads of information online. I now try to include more bananas, turkey, chicken, nuts, milk, honey, salmon and tuna in Luke’s diet. I also look out for foods which contain Tryptophan, such as cereals like porridge or anything that contains oats, which aids sleep. I don’t give Luke any coca products four hours before sleep, so if he does get a chocolate treat it’s as he gets home from school or mostly weekends.

The difference it’s made

Today, I spend a lot more time on Luke’s night routine. I didn’t always bath him at night but now I make sure I do, because it helps him relax and is a signal that it’s time to go to bed. Sometimes, Luke still wakes in the night but he usually goes back to sleep on his own. He knows if he gets out of bed and starts messing around, he won’t get his reward at the end of the week.

His school has noticed the difference too and his teachers are really pleased with his performance now. He’s been held back for the last couple of years but they say he can move into the next class soon.

Support services like Sleep Solutions are so important to parents like me. The Government is cutting so many services at the moment, it feels like parents of disabled children are being abandoned. That’s why it’s so important that Sleep Solutions carries on doing such great work.

Please make a donation to support more families like Luke and Helen get the support they need.

Your benefit questions answered

We’ve teamed up with a number of benefits advisers from a local DIAL (Disability Information and Advice Line) to answer your questions about recent benefit questions:

What happens when your 64? – Linda

Hi Linda,

If I understand your question correctly you are asking what happens if you are over the age of 64 when the new Personal Independent Payment (PIP) comes in? If you were already in receipt of DLA and had reached the age of 65 on 8 April 2013 then you will remain on Disability Living Allowance and not be subject to the new PIP benefit rules.

If on the other hand you are under the age of 65 on 8 April 2013 then you will be subject to the new PIP rules and the new criteria is more restrictive than the DLA criteria. This role out will happen from October 2015 for majority of DLA claimants. With PIP there are only two levels of the care component as compared with three levels of DLA (the lower rate has effectively been abolished). The two rates of the mobility component will remain but with different criteria. Just to complicate things even further if you want to apply after the age of 65 and it is your first application then you will have to apply for Attendance Allowance rather than PIP as this benefit is staying the same.

Will the change from DLA to PIP affect claiming for my son who is 10 who has ADHD and Autism? – Rachel

Hi Rachel,

The good news is that your son will not be affected by the PIP as children under 16 years of age will remain on Disability Living Allowance. You will be “invited” to fill in a PIP form when your son nears the age of 16. We would always advise getting help to fill in this type of form from someone who understands the criteria and the case law that will have been built up by this point.

Will I still be receiving the same amount that I was with the Disability Living Allowance or is there going to be reduction in what I receive with this new benefit? – Sean

Hi Sean,

This is a good question that many people are asking. Very often with a change to the benefits system something called “transitional protection” applies, this basically means you will be no worse off with the new benefit and will be protected against any negative impact. Unfortunately with PIP and DLA no such protection has been written into the system and the majority of people will need to make a new application for PIP unless they are over 65 or under 16 years of age. It’s difficult to go into more detail without knowing your personal details and looking at them against the new criteria.

What is PIP? Is it just a new a name or is DLA being scrapped? – Amanda

Hi Amanda,

DLA is being abolished and replaced by Personal Independence Payment (PIP) for adults of working age. PIP has its own criteria that differ from the current DLA criteria. DLA has three component for care and two components for mobility. Under the new PIP criteria the lowest rate of care is no longer available. In addition the difference between night and day care no longer exists. The walking distance for PIP is more restricted than the present rules.

We would advise anyone who is invited to apply for PIP to get assistance with completing the forms from an advice agency who is familiar with the new rules. If you are on DLA then your payment will continue until you have been assessed under the new PIP criteria and a new decision made. Most people who do get an award for PIP will be re assessed on a regular basis to make sure they still meet the criteria.

When do we need to start filling the PIP application? My son’s DLA runs out in 2015 –  Jenna

Hi Jenna,

When your sons DLA is starting to run out as he approaches the age of 16 you will automatically be invited to make an application for the new PIP, this will be around five months before his birthday. As your son is under 16 at present the DLA rules will still apply, even if he is subject to a review. We would advise you to keep copies of educational statements and, care plans and medical reports as these may come in useful when you do make the PIP application.

If you have been awarded DLA indefinitely, do you know what happens when it changes to Personal Independent Payment? – Debbie

Hi Debbie,

Unfortunately your indefinite award of DLA is not recognised by the new PIP benefit. The indefinite DLA award meant that no review date had been set for your current award but it is not a guarantee of continuing payments. The Government has anticipated that indefinite awards of DLA will start to be looked at from October 2015 onwards, unless you have a change of circumstances before then. You will be invited to make an application for PIP, and any award will be based on assessments under the new criteria.

When filling an assessment form it is important to remember that you need to be defining what your difficulties are with getting around and personal care, not saying how you manage. One of the biggest reasons for people getting turned down for disability benefits is that they don’t give the decision maker enough information. Under PIP you will also be called for an assessment and it is again very important to highlight the difficulties you have.

I have just been offered a four-bed house which is adapted for my son Aaron who has cerebral palsy. He has to have a bedroom of his own, but our local council say we will have to pay a bedroom tax as it is classed as a spare room – but it won’t be because Aaron will be in it! I truthfully do not understand this at all – David

Hi David,

I am assuming that your local authority is working on the principle that your son is of an age that he can share with a sibling (two children under 10 years of age either gender can share or two children under 16 years of age same gender). However, the good news is that the Government has changed the way they view disabled children sharing bedrooms and a Court of Appeal decision (HB/CTB U2/2013) has led to a change in case law. Local authorities have been instructed that children who have severe impairments should in certain circumstances be allowed a bedroom of their own. This law changed on 1 April 2013 so it is worth getting back in touch with your council and asking them if they have applied this case law in your particular case. Good luck!

What are the timelines for the change to the Personal Independence Payment?

  • 8 April 2013 – New claims for PIP start with the Bootle benefit centre. Bootle will handle the claims from areas including Merseyside, North West England, Cumbria, Cheshire and North-East England. People in these locations will be the first to claim PIP.
  • 10 June 2013 – New claims for PIP from the rest of the country.
  • October 2013 – The re-assessment of current claimants will start – but only if there is a change in circumstance or end of an existing award.
  • The majority of existing claimants won’t be reassessed until 2015.

Encouraging children who struggle with reading

Guest post from Rose-tinted World – a parent of a family affected by Irlen syndrome and dyspraxia. She blogs to raise awareness of these condition and to share information with others affected.

World Book Day is an annual celebration of books and reading. This year World Book Day falls on 7 March. World Book Day offers a great opportunity for children – it allows everyone to find something to enjoy about literature. This seems quite obvious but it is a point worth making. Not every child is a natural reader and all develop as confident readers at their own pace. Some, like my daughter, have to contend with a learning difficulty that makes independent reading more difficult.

How wonderful to have day where everyone can talk about their favourite books and fictional characters. At my children’s school the children are allowed to dress up as their favourite character for the day. This makes all the children equal. Nobody has to read out loud, or show how slowly they read or even say how many books they have read themselves. They only have to share their love of their favourite book with their peers.

We have always read to our children. This proved particularly helpful when my daughter’s problems with reading started. We were able to read her far more complicated books than she could read to herself. This enabled her to listen to chapter books and to develop an understanding of more complex narratives and extended character development. This also allowed her to continue to build on her love of literature.

Come World Book Day two years ago she chose one of the characters from the books we had been reading to her. This was one of the fairies from the ‘Rainbow Fairies’ series of books by Daisy Meadows. She loves these books and has collected many of the series over a number of birthdays.

Son dressed as dinosaurLast year my daughter dressed as the witch from the ‘Worst Witch’ by Jill Murphy. My son dressed a dinosaur from ‘Dinosaurs and all That Rubbish’ by Michael Forman. We also attended the book fair that was put on at the school. My children love this event – All the children love this event and it is always a pleasure to see children so excited by books.

Last year both my children chose books and we went off to meet a friend for dinner. Our friend was running a little late and my daughter took out her book and asked if she could read it. At this point she had only managed to read picture books but I didn’t point this out as she happily held up the chapter book she had chosen. My friend arrived and we started nattering not really noticing how quiet my daughter was being. My daughter read all through our visit with our friend and then went off to her room when we got home. The next morning my daughter announced she had read the book and it was great. I was amazed that she had managed to do this and a bit confused about where this sudden breakthrough had come from. So I asked her how come she had read the whole book and she answered quite simply – because she had picked it up from a shelf that said ‘read it yourself’.

"Read alone" sign

I always remember this moment with warmth. We had had so many struggles in the years before this – fraught home work sessions and frustrated reading practices. We had also had uncertainty about where progress could come from. It made me laugh that my daughter had taken a sign so literally and that this has enabled her to take a massive leap in her own development.

We are always happy when World Book Day comes around. We have always had the belief that the joy of literature can communicate itself and that there are many ways to appreciate books (listening, dressing up, drama etc). We enjoy World Book Day because it gives us the perfect opportunity to remember all of these things.

Find information on World Book Day
Ideas on World Book Day costumes

Harry’s cards

Anna, Harry’s mum, talks about how they came up with the idea for Harry’s cards, and the benefits he has found using them.

“After chatting with him about what to do, we came up with the idea of a set of small cards designed just for him, about him. Each card would have a question and a simple answer to that question. To make them personal we picked a photograph or picture that meant something to Harry.”

In Harry’s own words…

“I came up with the idea when people started asking me “why do you talk funny?” and “what is epilepsy?” so instead of trying to explain it I made these cards and gave them one. It has the question on the front and the answer on the back. They are my very own as they are about me and have a photograph of me on them as well. They help me.”

Anna continues, “We had them designed and sets printed. They are business-card size and a set of them can be kept in a little plastic box. Now when Harry is asked or even if he wants to volunteer the information, he can simply hand over a set and let people read. They also act as a good ice breaker and support in other discussions on cerebral palsy.

“He has presented them in his class and sets of them are available at his school, they are small enough to carry around in his bag or even his pocket. They can over time be added to and changed as Harry grows and develops.

“A simple idea but one which has proved to be very useful in removing the ‘elephant in the room’ (discussing his condition).”

Dog therapy

The Sun has published a story with the headline ‘See your Dogtor: Mutts who save lives and provide therapy’ – it’s a round-up of some of the great work that medical assistance dogs do. The centre piece is the story of Alice Boardman, her son Alex, six, and brother Tom, seven, and the impact Labrador-Retriever cross Lucie had when she joined the family. They live in Chorley, Lancs, with Alice’s engineer husband Dave. Read what Alice says on The Sun’s website.

But Alice has also had support from our parent support group, and here is what she had to say about Face 2 Face:

“I was a bit guarded at the beginning but Julia from Face to Face said she would just come along for a chat, so I decided to go for it. It was the best decision I’ve made and I am forever grateful to Julia. By the time you’ve made your first Face to Face appointment you’ve taken a huge step: you’ve admitted you’re not Superwoman! Julia introduced me to a lovely lady who has two disabled children. To meet another parent who has no agenda other than to support me, well, it was just wonderful. I needed someone to say: “I’ve been there.” Some of the sessions were emotional, some weren’t. For me, the sessions looked at where I am now and where I want to be in the future.

“The most empowering thing was voicing my deepest, darkest thoughts and knowing that I wasn’t being judged. Julia told me to open up and be honest about my feelings. After years of putting on a brave face it was such a relief. Julia was the first person to say to me it was ok to talk about all the hard parts of my life. Nobody had ever said that to me before. It felt like being given permission to be selfish for an hour or two and just think about me.”

Find out more about Support Dogs, the charity that provided and trained Lucie

Meldreth Manor School and The Skoog

Guest post from Petrina Lodge, Head of Education at Meldreth Manor School.

What is a Skoog?

See a Skoog below, and then read how we are using Skoogs at Meldreth Manor School to enhance our students’ communication and IT skills, their self-awareness and sense of control over things in their lives (cause and effect) and, importantly, to have fun!

This is a Skoog.

This is a Skoog. It’s a completely new kind of instrument. But it’s not just one instrument, it’s lots of instruments in a multi-coloured box of technology.

The Skoog is an exciting new musical instrument designed to empower those unable to play traditional instruments. The Skoog is a soft, squeezable object that simply plugs straight into your computer or laptop’s USB port. By touching, pressing, squashing, twisting or tapping the Skoog you can play a wide range of instruments, intuitively.

Simply touch, press, squash, twist, or tap to play the Skoog using any part of your body!

Designed to adapt and fit with your own natural movements, the Skoog sets you free to explore sounds and music in your own way.

By adjusting the Skoog you can challenge yourself and grow as a musician. Whether you have very limited mobility or bags of agility, you can make your Skoog fit your style.

Meldreth Manor School and skoogs

I think this is one of the most exciting technological developments for disabled children and adults of any age, for some time. It has been designed for accessibility for even really severely disabled children and adults, challenging each user at their own level.

At its most simple, this is a touch/sound response user-friendly cube, with different settings of sensitivity: the whole of the side of the cube, the button and area around it, are sensitive to touch of different types and pressures. It can be set to produce one sound per touch or multiple sounds depending on where it is touched, and how hard. It requires a USB connection to a computer – which doesn’t have to be sophisticated though it doesn’t work well on small computers such as notebook. It needs a long USB cable so that the PC or Laptop doesn’t end up on the floor, though The Skoog is very durable – it can be thrown or dropped or bounced and it will simply respond with sound.

Add to this that it can be used with a MIDI interface for as many sounds as you would want, and any sound-effect can be included in this, the fact that’s it’s recordable and can be programmed to suit any child or adult and played at any level, and you can see how exciting it is.

Playing with backing music

Students can play their own sound or play along with any backing music or other students: the musical key of the Skoog can be changed to fit whatever music is being used. All files can be saved using ‘Wave’ as one of several options.

More able students can use scores which consist of blobs of the colour of the face of the cube, linked to length for duration. Interactive scores are available which fill in the circle when the note has been played.

Lastly, but by no means least, the Skoog can be used to record sound – of any sort, from voice to vocalisation, to instrument: the sound file can be amended, so the Skoog can be used to help with Speech and Language therapy for working on vocalisations, and adapting them with students for greater clarity and understanding, or in articulating two separate sounds into one – such as blending sounds.

Words (and tunes) of songs can be pre-recorded for one word or phrase on each face of the cube and the student can repeat the song by getting the sequence correct.

The touch can be adjusted from very sensitive (so the sound is easily produced) to much less so, where there is much more control about producing the sound, whatever it is.

We are seeing really encouraging responses from students with very varied abilities.

Notes written by a music technologist

“I think there is a lot of potential for Tony to become a terrific Skoog player. He (then) played some distorted electric guitar by pressing and rocking the Skoog backwards, forwards, and to the sides. I opened a video on YouTube of Jimi Hendrix and Tony played along with the electric guitar. One of Tony’s favourite bands is The Rolling Stones, so we found a video of a live performance from them and he thoroughly enjoyed playing along…”

Tony is a teenager who has a life-limiting condition which is causing a gradual decline in his mobility and use of hands. Creating a sense of achievement is vital to Tony’s well-being, as well as helping maintain his fine motor skills.

And another excerpt, this time about our student called Kieran:

“I found him a clip from YouTube of David* playing saxophone for Van der Graff Generator and gave Kieran a trumpet sound on the Skoog. Kieran used his left hand mostly but also the right hand when encouraged to do so. He clearly enjoyed the session…”

* ‘David’ is David Jackson, our Soundbeam specialist who runs Soundbeam sessions at Meldreth Manor School for all our students.

The opportunities for using The Skoog are endless, watch this space!

 

Financial advice is changing

The Financial Services Authority (FSA), which is the Government’s financial services watchdog, is informing everyone that the advice given to us by finance providers, including banks is changing. You can read about the changes to financial advice here.

Making decisions about mortgages, pensions and savings is tough enough and we must have complete trust in the advice we get. However, many people have been let down and this is why FSA’s financial advice is changing.

The changes being brought in by them will help you better understand what you’re paying for and to have more confidence in the people advising you.

From 31 December 2012 they are making three key improvements to how you get financial advice.

1. You will know how much financial advice will cost you

Advice has never been for free. You would have been paying for advice that you received from your adviser, through a process known as “commission”, this is where your adviser was paid by the company which provided the investment you bought. We believe this encouraged advisers to recommend products based on what they could earn rather than what’s truly best for you.

So, from 31 December 2012 you will now agree a fee directly with your financial adviser upfront. Therefore, you will know exactly what you are paying for, where your money is going and also that the advice is not being influenced by how much your adviser could potentially earn.

2. You will know exactly what you are paying for

Your adviser will have to explain to you what type of advice they providing you, be it ‘independent’ or ‘restricted’. Advisers who provide independent advice will be able to advise on all investment options that may meet your needs. Advisers who choose not to do this will be offering restricted advice – this is where they are restricted by the companies they can offer you investments with, the product type, or both.

3. Improved professional standards

Investments can be tricky things for us all to understand. So we need those who help us to have the necessary skills. Therefore, we are making financial advisers meet higher professional standards, keeping their knowledge up to date so that they are aware of latest developments in the marketplace for you and sign an agreement requiring them to treat you fairly.

They will be monitoring firms to make sure they keep to these new standards.

They have published a guide to help explain these changes to you. It is free and available to download from the FSA website. Or you can call our Consumer Helpline to order your free copy on 0845 606 1234.