The UK's first What's On listing for people with learning disabilities

Bored? Nothing to do? Not anymore! Check out Netbuddy's inclusive entertainment guide...

Netbuddy has launched the UK's first What's On listing for people with learning disabilities and autism. Supported by the Press Association, who will be making it available to the national press, the listing will open up a world of entertainment that most of us take for granted.

The guide includes details of:

• Inclusive club nights

• Autism-friendly film screenings

• Live music gigs for and by people with learning disabilities

• Special needs yoga groups

• Inclusive festivals

• Inclusive dance performances and workshops

• Exhibitions by disabled artists

• Community arts programmes

• Relaxed theatre performances

• Local accessible sports

• Inclusive drama groups

We know there are lots of fantastic things going on around the country for people with learning disabilities and autism, and it's time more people knew about them! 

This inclusive guide is particularly important at a time when so many local services and opportunities to get out and meet other people are under fire. Nearly a third of local authorities have closed day services in the last three years, according to a recent Mencap report, leaving 1 in 4 adults with learning disabilities stuck at home.

Please help us make the listing a success by sending in any information you have about events or activities for people with learning disabilities near you. Whether it's a one off or a regular event, we want to hear about it! 

Please send your information directly to the Press Association at inclusive@pressassociation.com

And check out this great video of The Roll Mops helping us promote the new listing!

Promoting good mental health for people with learning disabilities

-->

Mental ill-health affects 25% of people in their lifetime and up to 40% of people with learning disabilities. Netbuddy has teamed up with The Judith Trust to highlight some of the issues people with learning disabilities and mental ill-health face, and the resources that are available to support them. 

The Judith Trust works to promote best practice and improve the quality of life of people who have both learning disabilities and mental health problems. Together, Netbuddy and The Judith Trust have launched an Info Pack on mental health and people with learning disabilities, and we would love to hear more of your tips so we can continue to develop this resource.

The Judith Trust is also working with the charity Partnership for Children, on a project called Zippy's Friends, which is designed to promote chidren's resilience and mental health. Children with special needs are up to six times more likely to develop mental health problems than other children. Ofsted has highlighted the importance of encouraging children and young people with special needs to believe in themselves, to feel that they can cope with life’s ups and downs and be as independent as possible. However, it’s difficult to find appropriate resources for doing this, especially given the wide range of ability levels.

Zippy’s Friends is a step-by-step programme that teaches coping and social skills. It is managed by  Partnership for Children, and is running in schools across England and in 26 other countries. The programme has been extensively and independently evaluated with consistently positive results, showing it reduces bullying while improving social and coping skills.

With support from NASS, Zippy’s Friends has now been comprehensively adapted for pupils from 6 to 17 years old in special schools, and has received an outstanding response, rated at 89% by teachers.

One senior teacher said: “Due to the National Curriculum, we spend so long on Vikings and Tudors and I frequently wonder how useful these are for our pupils, whereas there are immediate benefits to understanding emotions. Zippy’s Friends makes these topics a priority and gives us a chance to focus on them.”

Another teacher said of a boy in her class: “Since we started Zippy’s Friends he has begun to talk about his feelings for the first time. Before, if we asked him what makes him sad, he’d say he was never sad! But with Zippy it is different”.

Zippy’s Friends promotes resilience in children and young people and helps them to develop skills which are crucial for their wellbeing, now and in the future. The Judith Trust is working with Partnership for Children to ensure that Zippy's Friends is appropriately adapted and effectively used to develop emotional coping skills in children with learning disabilities.

To find out more about Zippy's Friends visit:

 http://www.partnershipforchildren.org.uk/zippy-s-friends.html

To find out more about The Judith Trust go to: www.judithtrust.org.uk

-->

Living without a diagnosis

It is estimated that about 50% of children with learning disabilities and approximately 60% of children with multiple congenital problem do not have a diagnosis to explain their condition, writes Lauren Roberts from SWAN UK.

 

Life for families of these children can be extremely difficult. Without a diagnosis, families have no idea what the future holds. They don’t know if their child will ever walk or talk. They don’t know if other children will be affected by the same condition. And they have no idea what their child’s life expectancy will be.  Many families describe this as ‘living in limbo’. Without a diagnosis, they struggle to access basic support, and many become isolated, believing they are the only ones in this situation.

So why are so many disabled children still undiagnosed?

It’s worth thinking for a moment about what we mean by a diagnosis.  Many children who we refer to as 'undiagnosed' may have difficulties such as global development delay or learning disabilities.  Or they might have medical problems such as epilepsy or hypermobility.  These labels are what we would describe as a ‘clinical diagnosis’.  They describe the difficulties a child has but, unlike a genetic diagnosis, they don’t explain why the child has those difficulties.   

Take a more familiar genetic condition like Down's syndrome – we know that person's learning disabilities are because they have Down's syndrome due to trisomy 21 (an extra chromosome 21).  If, however, doctors cannot pinpoint the change in a child’s chromosomes that have caused their difficulties then they are considered to be undiagnosed.

When we refer to children being ‘undiagnosed’ we usually mean children who, because of their symptoms, are suspected of having an underlying genetic condition (syndrome).  Symptoms may vary, but often includes problems with their hearing or vision, epilepsy, feeding problems, unusual features, problems with their brain development, problems with their growth and joints.  In some cases these symptoms will allow a specialist to make a diagnosis quite quickly. For other children however, who may have a very rare condition, it is not always so easy.  Families can go through years of testing.

This is often because some children may have a change in their genes that has never been seen before, so it's not part of the usual screening process. Sometimes genetic testing may show up changes in a child’s genes that are not thought to be responsible for their problems – or there may be so many changes that doctors can’t pinpoint which one is causing the problems.

Children with undiagnosed genetic conditions are also often referred to as having ‘a syndrome without a name’ – or ‘SWAN’ for short.  ‘SWAN’ is not a diagnosis and not all children described as ‘SWAN’ children will have the same condition. In fact, the most probable reason they are still undiagnosed is because they have a very rare condition so it’s highly unlikely they will have the same condition.  Many families however choose to refer to their children as their ‘Swans’ because it gives them a sense of belonging to a community and is the only term they can use to describe their children without reeling off a list of symptoms.

Although the underlying conditions of their children are likely to be different, the experiences of many of the ‘Swan’ families are similar.  This includes often struggling to get people to take their child’s difficulties seriously without a ‘label’ to explain them and having to cope with the emotional rollercoaster of test after test coming back negative.

Sometimes families are relieved when tests are negative, especially if the condition that was being tested for was life-limiting.  However once the relief has passed they are once again left not knowing what the future holds.  Many parents would like to consider having more children but, without a diagnosis, don't like to take the risk.

As children get older and enter into adulthood the need for a diagnosis usually remains just as strong for most families. Without a diagnosis the transition from childrens to adult services can be difficult and siblings of the affected adult may worry about whether their prospective children might be affected.

SWAN UK is a project run by Genetic Alliance UK which offers support and information to families of children without a diagnosis. You can find out more by visiting the SWAN UK website. You can also talk to Lauren Roberts directly on the Netbuddy website, where she offers help and advice through her site expert forum.

---

Postural care: protecting & restoring body shape

Sarah Clayton of Postural Care Skills has written the following blog to raise awareness of the importance of good postural care, particularly for people with multiple disabilities...

Postural care is a gentle form of physical therapy used to protect body shape.  People who find it hard to move at any age are at risk of developing changes in their body shape and these changes lead to further problems.  People who find it hard to move during the day often spend the majority of the night in one position.  Over time this position can become obligatory as their body shape may make it even harder to move or difficult to adopt alternative positions. 

Children and young people are most at risk of developing changes to their body shape because they are growing.  Puberty growth spurts are a particularly risky time as any existing distortion can become exaggerated – this is often the time that professionals start to notice such changes and can even guide families down drastic surgical routes before postural care is investigated fully.

So… how do I go about it?

The principles of postural care are very simple.  Ideally your child should sleep on their back, knees pointing to the ceiling, pelvis level, sternum central and with their head in the mid line... achieving this position with a child who may have complex healthcare needs is another game altogether!  One thing to realise if you are a parent is that there is no need to rush, the greatest successes I’ve seen are from families that go at the child’s pace.  If a 10 minute practice session lying on her back is all your daughter can manage at first then celebrate it – the next day you can add a minute or two more.  Learning to sleep in a new position is difficult, some children find it easier than others but bear in mind that sleep is precious – yours and theirs – so go gently.

Why is night time positioning so effective?

Because children spend on average three times longer in bed than they do in school – based on a child with 100% attendance who goes to bed at 9pm and gets up at 7am.  Also when children are asleep their tone naturally lowers and they can achieve positions with no harm or distress that they can’t achieve during the day.  It is also worth thinking about the fact that when children are awake they have very important stuff to do – playing, learning and making friends!  We know postural care is effective because we use measurement of body symmetry called the Goldsmith Indices  – a validated, non invasive method which allows families to check the progress of their child so that they know if they are on the right track.  If your therapist doesn’t offer validated measures they cannot compare your child’s progress as they grow – only the Goldsmith Indices are validated so is it important that this is the measure used so as not to waste your child’s time.

What are the risks involved in providing postural care?

 

The Safety Checklist

If you decide you need to make changes to your child’s sleeping position, work with your therapist to introduce the changes gently and carefully. If your therapist has concerns make time to discuss these with them.  Share the Mencap campaign work and talk to them about the need to practice supported lying during the day, not just at night. Most of us have established habits and have experienced disturbed sleep due to changes of circumstances, take a long term view and time to adjust. Analyse safety and risk by answering the following questions – if you are in any doubt regards your child’s safety do not leave your child unattended.  They may still benefit from short periods of practice time on their back but it will be during the day when you are around to keep an eye on them.

 

Question	Yes	No
Is the person happy? (If they are not happy it may affect their ability to sleep which will be damaging to them)
Do they have epilepsy? (Think about the type of seizures, when they are likely to happen and if the person’s safety will be affected by their position)
Can they breathe safely? (Think about the position of head and neck and the long term affect of the combined force on the chest, consider the possibilities and consequences of aspiration, reflux etc )
Are continence issues resolved?
Are they comfortable with regard to temperature? (Think about difficulties with controlling temperature and using different materials, consider the temperature chart )
Are there any new pressure areas resulting from a change in body position? (Think about where the weight of the body used to be taken habitually and where it is taken in the new position. Is there any pressure as a result of spasm or bony prominences?)
Are there any problems with circulation? (Think about the position of the limbs and how the circulation can get through. Think about the effect of gravity on the limbs)
Are there any other issues which need to be thought about in order to make sure any change of support and posture will be introduced safely and humanely?

What are the cost implications of failing to protect body shape?

You may need to help make a case for your child to get the equipment they need.  Think about the cost of NOT providing equipment, these would be associated with surgical intervention, complex equipment for mobility as well as moving and handling, pressure care, adaptations to the home should hoists be required, enteral feeding, pain management and an increased need for medications such as Botox or Baclofen.  The human cost to your child and their family of experiencing avoidable secondary complications must not be forgotten.  Ultimately changes in body shape lead to a loss of internal capacity, the internal organs are compromised as there is nbot enough room for them and for some people this will lead tragically to premature death. Use these arguments if you have any difficulty obtaining support from your local services.  Let us know if we can help you in any way. 

 How do we know if therapeutic positioning is working?

We can use very simple measures of body symmetry, non-invasive and statistically validated in 1992.  These measures can be used by families to monitor progress and to ensure that body shape is being protected.  They can also be used to hold service providers to account.

So, my top tips for using therapeutic night positioning or postural care...

Go gently, take your time and make changes at your child’s pace.  You have their whole life to help them learn that they sleep on their back

Listen to your child – a ‘good’ position may be uncomfortable and for some children even painful. Work with them to get a little closer to that ‘good’ position every day – no pain no gain is a damaging and abusive myth

Listen to your gut feeling – if it doesn’t feel right it probably isn’t right – you know your child better than anyone else. If you are unhappy about any form of equipment make sure you talk to your therapist

If you child has had enough of one position that’s ok – use star charts and rewards to help them learn to spend a little bit longer each day in the new position

Don’t be afraid to use cushions, towels and teddy bears to support your child – it doesn’t have to be expensive, specialist equipment

Watch out for problems with temperature – as you support your child’s body you may make them hotter than usual – see how they are and think about changing their bedding, bedclothes or heating in the room to support them to stay comfortable

Seek the support of your therapist so that you are able to access local equipment provision – statutory services should pay for the equipment not the family

Know what it is you are trying to prevent – don’t be afraid to highlight how serious the secondary problems will be for your child without the right support

Use parent support networks – there are many hundreds of families out there using night positioning and we can all support and learn from each other

Try to work in partnership with local services but if you are really unhappy with the service you and your child receive use the local complaints procedure.  If the situation is not resolved the Health Ombudsman Service may provide you with further support

How do I find out more?

Don’t be afraid to ask for support – there is a closed group on Facebook of parents and people who use postural care. Just search for Postural Care Peer Support and you will find us! Or use this link http://www.facebook.com/home.php?ref=hp#!/groups/421383944606407/  

You can take a look at our website www.posturalcareskills.com call or email us.  We’re happy to talk this through with anyone interested in investigating postural care with their child.  

You can also find out more about postural care and the Postural Care Action Group on the Mencap website: http://www.mencap.org.uk/posturalcare

Children and Families Bill

Jane Raca, parent and author of Standing up for James, has written the following open letter to the Children's Minister, Edward Timpson about the Children and Families bill. If you would like to find out more about the bill, and the SEN reforms it proposes, please visit: mencap.org.uk/campaigns

 

Mr Edward Timpson MP

Parliamentary Under Secretary of State for Children and Families

Sanctuary Buildings

20 Great Smith Street

Westminster

London 

SW1P 3BT

 

11 March 2013

 

Dear Mr Timpson

 

I am a lawyer and author with a 13 year old disabled son. James has cerebral palsy, epilepsy, learning disabilities, challenging behaviour, and is severely autistic.

 

I am writing to you because there is desperate suffering going on all over the UK, which the Children and Families Bill currently before Parliament fails to remedy, even though it was intended to help.

 

I refer to the plight of families with severely disabled children, who are caring for them 24 hours a day from birth. These children have extensive, specialist needs. They may wake for hours in the night and need supervision or postural change. My son smears his faeces around the bedroom and sometimes attacks the person trying to clean it up. My friend’s autistic child is regularly up at night endangering himself and others. On one occasion he flooded the house and on another he climbed onto the roof. 

 

There are parents trying to survive for years, raising these children on little sleep, with no breaks and no help. They are suffering from depression, exhaustion and marital breakdown. Some have killed themselves and their children because they cannot face another day. 

 

This is happening despite the fact that local authorities are under a statutory duty to support these families from birth. Councils are relying on the ignorance of parents about their entitlements, and the use of delaying tactics, to avoid the considerable expenditure which is needed.

 

What can a parent do, if their local authority refuses respite and home help, as initially happened to us? The only answer is to complain to the Local Government Ombudsman, who requires that you first exhaust the council’s internal complaints procedure. This all takes months, even years. The alternative is to apply to the High Court for Judicial Review of the council’s decision. Neither option is a realistic or acceptable solution.

 

If life for these families is to improve, they must be able to turn to a fast, independent forum for redress. Such a forum already exists in the Special Educational Needs and Disability Tribunal. That Tribunal hears appeals from parents about their children’s special educational needs. A parent can appear without legal representation and have a hearing within 4 months, in front of specialist independent judges. 

 

Why can’t that Tribunal also rule on social care and health provision for these very disabled children, whose complex needs are so often inseparable from each other?  

 

The Children and Families Bill misses a golden opportunity to remedy this injustice. It proposes that these children’s education, social care and health needs should be viewed together, and is introducing combined plans to replace the current education-only statements. However, the right to appeal to the Tribunal will not apply to the social care and health contents of the new plans, only the education provision. So parents will be left in the same situation as now. 

 

The Government’s Green Paper, which preceded the Bill, said, ‘This Green Paper is about …families – who have consistently called for better support for their children and themselves. Families of the most disabled children who are providing 24 hour care from birth… ’.

 

If the Government really mean this, then the Bill must be amended to allow a right of appeal to Tribunal in relation to all elements of the new combined plans. New statutory duties alone will not be enough, as local authorities (and health services) may still try to get around them. If parents with the most extremely disabled children can’t get proper care provision, then a situation which belongs in a Dickens novel, not 21st Century Britain, will remain unchanged.

 

Yours sincerely

 

Jane Raca

Netbuddy Says...: It's a family thing: siblings & special needs

Netbuddy Says...: It's a family thing: siblings & special needs: Having a child with special needs affects the whole family and, as a parent, you inevitably worry about how broth...

It's a family thing: siblings & special needs

Having a child with special needs affects the whole family and, as a parent, you inevitably worry about how brothers and sisters will cope. Parenting Siblings Advisor Paula, who works for the UK charity Sibs, became part of the Netbuddy community last year to share her advice for giving siblings the support they need. Here we look back at some of Paula’s tips for helping our Netbuddies manage the ups and downs of everyday life...

Q: Our younger boy is getting very manipulative during play times with his older brother who has Down’s Syndrome. He is always winding him up and his behaviour borders on bullying. We ensure he has plenty of activity time alone or with friends, and with mum and dad, but he says he hates weekends and home time. Any ideas?

A: The focus you have put on ensuring your younger son gets time with you and his own friends is an important way of supporting him. He seems to be expressing his feelings through his behaviour towards his older brother and has let you know that he dislikes weekends.

Set aside some time to talk to him about how he feels. Begin with what he has told you so far – it is important to name the feeling so he can see you understand and have accepted how he feels.

Make sure this is a time when you won’t be disturbed or distracted by other things or people and ask him how home time could be made better. Write down his ideas to reassure him you are taking him seriously and then plan together which things can become regular routines and which could become a special treat.

You could also make a worry box – ask your son to help and explain that it is a place for him to write down or draw his feelings and that you will check what is in the box each day. Whenever he has used the box take time to talk about his worry and how it can be resolved.

Q: My son gets very upset when people stare at his brother. What should I say?

A: This is a common problem – many feelings get upset when people stare at their disabled brother or sister. It’s upsetting for parents too. If this happens, make sure you take time afterwards to talk about how this made him feel. Acknowledge his feelings and share your feelings too. Explain why people may be staring – sometimes they simply don’t have good manners, but they may be curious too.

Come up with a simple explanation to give to people who stare and practice it at home. For example, a sibling of a child with autism who struggles to stand in line at the shops might say: “My brother has autism - he finds it difficult to stand and queue sometimes.”

You might also develop a plan to take your son's mind off people staring, like counting to 20 and down again. His response will often be guided by yours, so if you become defensive and aggressive so will he. But trying to hide your feelings does not protect siblings – they will often be able to tell you are upset. Again, it will be helpful to talk about feelings. Perhaps enjoy a bubble bath at the end of the day as a treat and explain that this is how you can overcome frustration or disappointment. Talk about how to manage difficult feelings, such as by looking forward to a treat, reading a favourite book when you get home or having a cup of hot chocolate.

Q: How common is it to see anxieties in siblings? Our son, 8, has autism and his 12-year-old sister is constantly worrying about being sick and catching germs. She is obsessed with sell-by dates and washing her hands.

A: Siblings do experience anxieties because of all sorts of situations – not just having a sibling with special needs. At 12 years old, your daughter will also be dealing with the move to secondary school.

Anxieties can present in different ways – changes in behaviour, a drop in achievement at school, emotional health and so on.

One concern for a number of siblings is a fear of catching the same disability. This means they do not understand the condition, so talking to her about autism and explaining as much as you can will help. There is a useful booklet to help siblings understand autism called ‘Children with Autism. A booklet for brothers and sisters’ by Julie Davies. This costs around £5.00 and you can order it from Nottingham Early Years Centre (tel: 01623 490879).

Q: How can I make sure special occasions like Christmas don't create extra problems with siblings? I fear everyone will be concentrating on our disabled child so much and forget that our other children need time and attention too.

A: Here’s a great activity for siblings to remind them how important they are. It focuses on the idea of their perfect day, and just imagining this can be uplifting.

 Help them write a list of all the things they would need to have a perfect day and start imagining how it would go. Write pictures or use it as a story-telling session. If there are any parts that you can make happen them do them – set a date and look forward to a slice of that perfect day together.

 Q: How do I cope with our four-year-old fibbing about his sister? He says things like ‘I saw her walk’ (she has complex needs, MPLD etc). We are open about her needs and prognosis. Could it stem from watching his baby brother start to walk and talk? 

A: There is likely to be some confusion for him seeing his baby brother develop skills that his sister has not got. It’s great to hear that you have started to explain his sister’s disability to him, as siblings benefit from having age-appropriate information from as early an age as possible, but I wonder if something visual would help your son absorb and understand the information better – something he can look at and ask questions about. This will also help you to reinforce what you have talked about.

 One idea that works particularly well with younger children is to make an information scrapbook. Have different pages about different family members (including pets) and use pictures, magazine cuttings and coloured pens to encourage your son’s interest. On his page your son could include friends, hobbies, favourite foods, his feelings etc. You can then help him add similar things to his sister’s page and create a separate page for her disability which explains what it is, what she can and can’t do because of it etc.

 Use the scrapbook as a reminder of his sister’s condition and acknowledge that he may imagine her walking (where would they go? What would they do?). End this talk by reminding him that she cannot walk but that imagining it is enjoyable.

Q: How do I answer the question: Is my sister/brother going to die?

A: This isn’t an easy thing to discuss. You should be honest, not dismiss the question and try to explain what the condition does to the body (sensitively and age-appropriately). Although it can be hard-hitting, this direct question is a good thing as it means that worries are not being hidden.

 Research, and my own practice over the past 16 years supporting siblings in groups, has shown that siblings cope better when they are told about their brother’s or sister’s diagnosis and prognosis. Children are very perceptive and pick up on signs and overhear conversations at home even when we think they are not listening. If they are not told openly they may make up their own version of events which could be worse than the reality.

 Giving children open, honest and age appropriate information about the prognosis allows them to ask questions and be supported with the feelings and concerns they may have, rather than struggling in silence with what they think will happen. A lack of information and openness can have a negative impact on siblings which can manifest in difficult behaviour, becoming withdrawn or avoiding spending time with friends. There is also the risk that they find out from someone else, on the playground for example, which may lead to them mistrusting what you tell them in the future. They may also feel angry with you for not trusting them with the information in the first place.

 

For more great tips on parenting siblings of children with special needs, visit the Netbuddy website.