Tag Archives: third sector

‘They made me feel worthwhile’: community-based alternatives to care

Building relationships with children at risk of care helps keep them at home (pic Includem/Warren Media).
Building relationships with children at risk of care helps keep them at home (pic Includem/Warren Media).

The fate of children in care in Scotland has recently his the headlines; care leavers need more support, say experts, if their life chances are to improve. And today Michael Gove has criticised the care home system in England. But what if some vulnerable children could be prevented from going into care in the first place? In a joint guest post, Daniel* and the support worker who helped him describe how a Scottish community-based alternative to custody and secure care helped him turn his life around.

imagesDaniel*, 21, describes how he was supported by the charity Includem:
“I don’t even know if I would be alive had it not been for Includem. I was drinking all the time and taking drugs, valium, cannabis, ecstasy. I was fighting a lot with my mum and other people and ‘doing turns’ – theft, breaking and entering offences – to get money to spend on food and clothes. Things started to go wrong when I left primary school and when I was about 12.

I had a bad relationship with my mum – we argued all the time – and I was constantly getting thrown out of the house. I had nowhere to go so ended up on the streets. I was always in front of children’s panels and going into temporary care and then home again.

I wasn’t happy and could see that this [drinking and taking drugs] wasn’t the right thing to do but it was what was happening in my life at the time. I felt guilty about what I was doing. I wanted things to change but didn’t now how to make changes. I wanted things to be normal and to have a normal family life.

A social worker referred me to Includem; I worked with a few project workers until I clicked with my project worker who became the person who I felt I could work with. We spoke about goals and how to get there and how I was worthy of a better life.

My worker helped me when things were really bad at home; I could call the helpline at any time and Includem would come out and talk to me and my mum and make it ok for me to stay at home. They would meet with me at times when no one else would be able to – at the weekend, when I needed them I would contact the helpline and they would be there.

Includem helped me stay at home and they helped me get into training and never gave up on me. I respected them and they respected me. I felt hopeful that things could be different. They helped with all sorts of things – planning how to spend money on food and clothes to helping with how to deal with bad situations at home and how to get training to help to get a job.

They were there through everything – even during the night – when I lived at home, when I was homeless and then moving into my own place. They made me think that I was worthwhile.

Before I would just go out and steal things to sell so that I could buy new clothes. I learnt how to save money and how to spend it on food so that I would last. They taught me how to deal with situations with my mum – how to walk away from violent situations and how to stay calm.

Things changed for me because my worker listened and respected me so I trusted and listened to my worker. I got on with her and established a relationship – I started to feel hopeful that things could change. Includem listened and didn’t give up on me, even at the start when I didn’t want to work with them.

Now I live with my daughter and girlfriend and I have my own home. I try hard to be a good dad that my daughter can be proud of – I want her to feel loved and cared for and safe. I want a routine for my family and my daughter and I am trying to find a job.”

INCLUDEM-LWKaren McCulloch, Includem project worker, on how she supported Daniel:
“Daniel was referred to Includem at the age of 15 due to his drug and alcohol misuse, anger, aggression, and difficult family relationships. He was a persistent high tariff offender and was facing homelessness due to a chaotic relationship with his mother.

When we meet a young person for the first time we listen to what they have to say and let them know what we can offer. We talk through their lives and identify the areas that aren’t working the way they should and start to look at how these could get better. We identity goals and talk to them about A Better Life – a unique toolkit that we use. We let them know we will meet them on a frequent basis and that we will plan normal social activities where we can meet and talk.

We let them know we put them first and they can trust us – that we want the best for them. Often this is a first for young people who haven’t had proper care in their lives or someone to talk to and look out for them.

We gave Daniel intensive support in managing his anger, including practical support on issues such as how to remove himself from volatile situations. Daniel’s relationship with his mother was difficult, and Includem worked with her to set clear and consistent boundaries within the home.

Daniel and his mother used Includem’s 24 hour helpline, not only at times of crisis but for advice and support. Includem supported Daniel for whilst he was on an electronic tag, a period in secure care for his own safety, and voluntary transitional support into adulthood. Throughout this time, Includem supported and liaised with Daniel’s mother to maintain their relationship.

Daniel didn’t gel with his first project worker so we changed workers to someone that Daniel clicked with. Our model is relationship based therefore we are flexible and will try different workers with different young people for the right relationship to be established.

My first visit to meet Daniel was on a Friday night when Daniel was out with his care home – Daniel had none of his own clothes so I went to his home and picked these up and took them to him. We visited him throughout the weekend and supported him. We talked about ways to change things – and assured Daniel that his life could change with the right support and direction. We put a plan in place that we would work through together in order to meet outcomes.

We started to see real changes. We taught Daniel to listen to his “inner speak” – the voice within that said he deserved a better life and that he could make it happen. When he started to realise that he did deserve better, and how to achieve it, things started to change.

Daniel used the 24/7 helpline regularly as a support – he would phone if he had been thrown out of the house or was in trouble. He would call if he was arguing with his mother – on one occasion an Includem worker would be speaking to Daniel on the phone in one room, another would be speaking to his mother on the phone in another room and a worker would be driving to the house to help calm the situation face to face.

Daniel would forget basic things such as when to eat as sometimes he was living between people’s houses – we would remind him that this was essential and give him practical support on what to eat and how to budget his money. We would plan our contact visits with him around when he would receive money and would take him to the supermarket and show him how to spend the money wisely and make it last.

Daniel moved into his own home under a mainstream tenancy at 19 (he is now 21), and is in a settled relationship and doing well. He has created his own family – he and his girlfriend have a baby, and there is no social work involvement with the family at all. Daniel has accrued no court charges or pending court charges for fouryears. He’s very keen to get a job. His partner is looking to start college and his main aim is to build on his progress and continue to provide a happy and loving environment for his child and partner.

We have a “scaffold of support” in place – a team of three – a project worker, an assistant project worker and a mentor – assigned to each young person so that they can build links and relationships with more than one person. Every service we provide is unique for that young person – we fit our service to them, not the other way round.

Among our successful outcomes is the fact that 90% of young people we worked with in a project with Strathclyde police reduced their violent offending. And with 72% of referrals from the Clackmannanshire area, Includem prevented family or community placement breakdown.

The biggest challenge is usually at the outset when young people are wary of accepting help and opening up about issues. Another challenge is actually meeting up with young people on planned visits at the start– often they don’t turn up for planned meetings and we have to go looking for them.

You learn to be creative in situations like this – finding solutions to challenges such as this and others – and speaking to colleagues for advice and ideas in order to make contact. We constantly refer to our A Better Life toolkit for support and advice.

Includem operates 24 hours a day, 365 days a year. We accept any referrals via social work departments, courts and police. We never turn any vulnerable young person away – no matter what their situation is and how chaotic it may be.

‘Stickability’ is a word we have coined – it’s a key part of our service and is at the heart of what we do – we are persistent, we won’t give up on a young person and we will stick with them at all times during the support we give them.”

* Daniel is not the young man’s real name

Fetes, fundraising and firsts

Raffle ticket seller Raana Salman at the Lantern Community open day
Raffle ticket seller Raana Salman at the Lantern Community open day
I’ve never thought of my sister, above, as a saleswoman – she can be engaging, encouraging, persuasive and talkative, but she’s never actually sold me anything other than an idea (usually about what film to watch; invariably a Bond movie).

So my family and I were impressed – and proud – to see Raana in marketing mode (above, resplendent with pot for raffle ticket cash) for the first time on Saturday (scroll down for a gallery of snapshots).

We spent the day with Raana at a fundraising fete and open day at the Lantern Community in Ringwood, Hampshire, where she lives and works.

Raana, along with some of her peers, formed a veritable raffle mafia – but not only was parting with cash in a good cause, it was impossible to say no when the ticket sellers assured you “this one’s a winner!” (this was clearly a sales spiel – neither I nor anyone in my family won a single thing…).

The open day in the Lantern’s grounds – with flowers, plants and fruit and veg in early autumnal bloom, stalls, food and live music – marked the opening of a new house, Silver Birches, for adults with learning disabilities. The day was also a celebration of the charity merger between the Lantern and Seahorses. Seahorses is four-star holiday accommodation on the Isle of Wight run by, with and for people with disabilities (as well as for those without) – a B&B with a bonus, as I explained in a recent Guardian piece.

From the fruit, vegetables and plants on sale and display to the bakery produce and the range of arts and crafts including pottery and woodwork, the day showcased the talents of a creative and inspiring group of people. And one of them, running from stall to stall with a book of pink tickets and a broad smile, refusing to stop to chat to me (“I’m busy! I’m working!”), was my saleswoman of a sister.

Talking to my eight-year-old daughter about the fact I was going to blog about our day with Raana, she immediately suggested a title for the story. It’s so neat and accurate, I think it rounds off the post and sums up the event perfectly: The Lantern Stars.

Here’s a small taster of a very successful day:

The man dreaming of being ordinary – and the campaign to help him

An awareness-raising postcard by Cameron, 18: "Each fruit on my tree of life displays a message for me to follow. This helps me to mature and develop".
A postcard designed for a new disability awareness campaign launched today. “Each fruit on my tree of life displays a message for me to follow. This helps me to mature and develop”, says its creator Cameron, 18.

How many people aspire to be ordinary? Success is usually defined success as standing out from the crowd, being the focus of attention or doing something extraordinary.

But Shairaz’s wish is different.

Shairaz wants to be regarded as ordinary because, as he says, he and his peers are usually regarded as scroungers or superheroes.

Shiraz, who has a learning disability, says of the stereotypical perception of disabled people: “We shouldn’t only be portrayed when we do something amazing or something bad. We should also be portrayed when we are doing ordinary things. Most of us are not scroungers. It’s the government that has decided to offer us support, it’s not us begging. Many people can’t work and that’s not their fault, we shouldn’t be called scroungers.”

Shiraz is taking part in a new campaign launched today by the social care charity United Response. Along with a survey and a new report on attitudes to disability, there is an art project and exhibition from next week, Postcards From The Edges which focuses on the everyday lives and achievements of disabled people (see the examples on this page, view more on the charity’s dedicated project site and via this Guardian gallery).

The survey, report and artworks coincide with National Paralympic Day on Saturday, marking a year since the Paralympics – but the event’s impact may be fading, according to United Response’s survey. The aim of the survey, report and art project is to transform how the public sees disabled people.

For example, two thirds of the 1000 people surveyed say they see more disabled people in the real world than in the media, while four out of five say that the public does not know enough about disability.

While the research shows the Paralympics was a memorable event – Ellie Simmonds’ four gold medals is named as the best memory by 31% of respondents – less than one in five of respondents could name a disabled person who has become well-known in the year since the Paralympics. Meanwhile, 40% found it difficult to name a well known physically disabled person and only one in five could name a person with a learning disability.

The postcards, many of which will be showcased in an exhibition at Bankside Gallery in London, complements this research. The charity asked people – well-known or “ordinary”, with or without disabilities – to write or draw cards in any creative style. The only proviso was that the card design in some way responded to the question: “What do you want to tell the world?”.

United Response has collated the cards over the last eight months and the results – more than 550 pieces of art – are a snapshot of thoughts, hopes, fears, ambitions and everyday experiences of a wide range of people. There are submissions from older people with mental health needs, parents of children with autism, people with physical disabilities, children and social workers. Among the postcard designers are Paralympians Hannah Cockroft and Dame Sarah Storey, Olympian Sally Gunnell, Suede singer Brett Anderson and actor Emma Thompson.

An awareness-raising postcard by Scott, 19, from Staffordshire: "“My postcard is to try and educate people about autism and how others can be ignorant towards the condition”.
An awareness-raising postcard by Scott, 19, from Staffordshire: ““My postcard is to try and educate people about autism and how others can be ignorant towards the condition”.

The report from the charity’s campaigns panel (which Shairaz is a member of) underlines the messages from the survey and the art project. The publication, Superhumans or Scroungers, reveals the gap between the portrayal of the superhuman Paralympians and media coverage of disabled people.

“We shouldn’t be portrayed in just one light, as superheroes or scroungers,” says Shairaz about the report. “People should know more about our lives overall… I would just like to see us portrayed more as ordinary people. Yes we’re special in some ways, but so is everyone. It would be good to see television not just concentrating on our disability but on who we are and what matters to us, like the place we live. That would give everyone a chance to learn from different experiences and that might help everyone to stop generalising.”

The aim of the report and panel, Shairaz adds, is “to make people more aware of what disability is about…A lot of people have the wrong impression of people with disabilities. They think disabled people are all the same and should be classed under one branch. They don’t understand hidden disabilities, like my mental disability. A lot of people think that people with mental disabilities are crazy or stupid, but that’s not true.

“People make assumptions because they don’t understand. So I think the panel is about helping people understand and also telling them that we have rights and views and opinions. Our opinions count as much as able people’s opinions.”

The report stresses that media coverage of disability tends to focus on people with physical disabilities, meaning that people with learning disabilities, autism, mental
health needs and other hidden disabilities are “almost invisible”.

Shairaz and his fellow campaigns panel members also worry about the growth in news stories about welfare with, as the report states, a simplistic representation of disability creating “a polarisation of who is ‘deserving’ or ‘undeserving’ of support”. The report explains, “it means there is very little attention given to ordinary disabled people or the positive contributions that they make”.

The postcards project ties into this, says Shairaz, because it offers people a wider vision of disability and of the achievements of disabled people in a positive, creative way. He adds: “It’s also good to tell people your experience, but nice to do it in a fun way… Life isn’t always serious and spilling your heart out. When people ask about my life I don’t say “Oh, I just mope about and feel sorry for myself”, I say I have fun too.”

Su Sayer, United Response’s chief executive co-founded the organisation 40 years ago when it was the norm for people with learning disabilities to be hidden away in large institutions. She adds: “While the last four decades have seen huge changes for many people with learning disabilities, there is still widespread prejudice and lack of understanding from the broader public. Many people still don’t understand much about disability or the lives of disabled people, let alone their achievements.”

A postcard by Yvonne J Foster, an artist living with depression: “I have depression and sometimes I am so overwhelmed with strong emotions that my body collapses."
A postcard by Yvonne J Foster, an artist living with depression: “I have depression and sometimes I am so overwhelmed with strong emotions that my body collapses.”
Postcard by artist Yvonne J Foster: "Sometimes I cannot cope with reality. It’s not safe for me to remember things that have happened so I create a safe place for myself in my head.”
Postcard by artist Yvonne J Foster: “Sometimes I cannot cope with reality. It’s not safe for me to remember things that have happened so I create a safe place for myself in my head.”
Postcard by artist Yvonne J Foster: “Psychiatric hospital shouldn’t have such a stigma. I was admitted twice last year and it was the safest place I could have been at the time”.
Postcard by artist Yvonne J Foster: “Psychiatric hospital shouldn’t have such a stigma. I was admitted twice last year and it was the safest place I could have been at the time”.

Sayer adds that the two extremes of how disabled people are portrayed – lionised as superhuman or criticised as scroungers – is “far, far from the reality of the overwhelming majority of disabled people today…’ordinary’ disabled people are still very absent from public life”.

Shairaz agrees. “It’s important to know that it’s not just the people who can do great things at sport who are important,” he says. “Everyone is a hero in themselves. My girlfriend says I can be a hero sometimes, because of the support I give her.”

* The Postcards from the Edges exhibition opens at Bankside Gallery in London on Tuesday 10 September and runs until Sunday 15 September. It will be followed by a showcase at the Sage in Gateshead (1- 4 October), the Grant Bradley Gallery in Bristol (private view on the evening of 23 September) and the Camp and Furnace Gallery in Liverpool (4-10 November).
* Find out more about the project by visiting the Postcards website.

Older people power: society and product design need to wise up

Gordon Morris, Age UK Enterprises
Gordon Morris, Age UK Enterprises

Society often fails to realise that people aged 65 and over currently represent a sixth of the UK population responsible for £120 billion worth of spending power a year – over 18% of total spending in the UK. And the number of people aged 65 and over is projected to rise by nearly 50% in the next 20 years to over 16 million (figures from the Office for National Statistics).

As Britain adapts to an ageing population, the marketplace for assisted living aids and adaptions such as stairlifts, adapted bathrooms, wheelchairs, mobility scooters and pendant alarms will become a dominant area of spending. Market forces will encourage producers and distributors to sharpen up their communications to older people but it would be a very positive development if we were to address this now rather than later.

The government’s 3 million lives initiative, announced last year with the aim of improving access to telecare and telehealth, is an important step towards transforming service delivery for people with long term conditions, and/or social care needs, by utilising telehealth and telecare within health and social care services. Telecare and telehealth relate to the use of technology-related devices, from high-tech equipment to simple sensors, that help people maintain their independence and boost their safety. And during a recent debate on the Care Bill in the House of Lords the government announced that it intends to maintain existing entitlements for older people regarding aids, minor adaptations and intermediate care.

These developments are warmly welcomed. However recent research by Age UK Enterprises, the commercial arm of the charity, found that there is still a way to go in ensuring that knowledge about these developments is passed to those who most need them. The survey revealed that 20% of over 65s feel there is a lack of information available about independence aids for the home.

The low consumer awareness amongst people aged 50-70 of the very products which can aid independent living at an older age can be addressed. But there are also social perceptions that we need to tackle too. A key finding from the research conducted by the Health Design & Technology Institute (HDTI) at Coventry University in partnership with Age UK and campaigning charity Grandparents Plus, is that while some in later life would benefit from independence aids, many older people do not want to be stigmatised or singled out as being in need of “assisted” products or “equipment”.

Age UK Enterprises is interested in this as we provide personal alarms (one of many aids that help older people remain independent within their own home). It is imperative that the utmost is done to prevent falls and accidents within the home and these aids are a step in the right direction to ensure the protection of this demographic (NHS figures show that around 30% of adults over 65 and living at home will experience at least one fall a year and this rises to 50% of adults over 80 who are at home or in care).

So we need to collectively tackle these issues by thinking comprehensively. From their inception and design these products need to help avoid stigmatising older people by ensuring good, attractive, non-medical design. Their availability needs to be considered too.

Out Age UK Engage Business Network aims to share knowledge and insight about what the ageing process means for business best practice. It encourages better design of mainstream products and services to meet the needs of our ageing populationThe Network is seeing more and more businesses waking up to the idea of making services and products easier to engage with and inclusive; not just subsets of their product range aimed at the older market but their entire offering. If done well, this will naturally make brands accessible to all customers, including people in later life.

We must help older people realise how much support is available to them. There are solutions available to help improve their independence, as well as their confidence in the support available to them. This support network is substantial and includes everyone from charities and businesses, through to local authorities and the government, and each element has its part to play in raising awareness of independence aids.

* Gordon Morris is managing director of Age UK Enterprises. Age UK’s ‘Adapting your home’ guide includes information about the aids that can enable older people to stay independent in their own homes for longer; for a free copy call Age UK Advice free on 0800 169 6565 or visit www.ageuk.org.uk to download a copy.

Public transport should be for all members of the public

Kevin Preen and Michael Edwards embark on their campaign to raise awareness about travel and learning disability
Kevin Preen and Michael Edwards embark on their campaign to raise awareness about travel and learning disability

Public transport – by definition involves “buses, trains, and other forms of transport that are available to the public, charge set fares, and run on fixed routes”. While the network is meant to be for the use of the general public, a significant section of that population – people with a learning disability – faces challenges when using the system.

While people with a physical disability are often literally unable to get onto vehicles, someone with a learning disability might be physically capable of stepping onto a train, but might find the system as a whole impossible to negotiate.

My sister, for example, likes using buses, trains or Tubes but it would be impossible for her to safely work her way round any of those modes of transport alone; her anxiety would leave her rooted to the spot and she’d be unable to cope with making sense of the numerous changes and confusing timetables..multiple folded leaflets, tiny print, lots of abbreviations..forget it, it’s difficult enough for the rest of us, let alone someone with Fragile X syndrome. So her journeys are accompanied or she’s driven from A to B by us but for other people with learning disabilities, there are not many other options for getting about.

Take Kevin Preen, without public transport, he says he would be “stuck in doors all day”. Kevin, 52, has a learning disability and Perthes’ disease, which led to a hip replacement when he was seven-years-old.

Kevin is supported by and is a peer-advocate for Oxford-based learning disability charity My Life My Choice (he has also represented Oxfordshire’s learning disabled community at the National Forum). He is now spearheading a travel and transport campaign for My Life My Choice during Learning Disability Week, which starts today.

The 52-year-old, who is currently awaiting an Atos assessment for work capacity, adds”: “Without public transport…I could make a few short journeys a week by taxi but I couldn’t afford to do much.”

His awareness-raising mission, known as the End to End trip, involves Kevin and a fellow peer advocate, Michael Edwards, travelling by train from John O’Groats to Lands End to highlight the importance of public transport to learning disabled people amid the cuts.The social exclusion often faced by people with learning disabilities is being exacerbated by the cuts as day services close and public transport becomes even more important in boosting people’s independence.

End To End Infographic

Kevin adds: “It will be a new experience. I’m getting excited about meeting people on the train and raising awareness of how important public transport is to people with learning disabilities”

Kevin and his fellow “transport champion” Michael will stay in B&B’s and hotels along the route with travel passes issued by train firm First Great Western. Accompanied by the charity’s champions coordinator Dan Harris – who will be capturing their journey online – the aim is to record the good and bad aspects of the trip. Dan adds that even if the experience involves getting on the wrong train, “as long as it isn’t going to seriously impact our journey, it would be good to capture that and explore the challenges that led to the mistake”.

Michael, 59, who has very limited vision, epilepsy and a learning disability. He lives with his brother who acts as his carer. Michael helped found the self-help charity and is a trustee of My Life My Choice. He says: “Trains bring me a lot of pleasure. I have been planning my own routes and taking trips as far away as Devon for 15 years. I’ve been watching trains on platforms since 1967…I like trains, I’ve got myself a hobby.”

According to the charity, among the main travel issues faced by the people it supports is the difficulty in being unable to understand timetables and dealing with confusing platform changes. Kevin, for example, once ended up getting on a train heading for Penzance instead of his home area of Oxford because of making a wrong platform change. Another major problem is that of bullying on public transport.

Bus and train drivers are also not always aware of the needs of disabled passengers. Just last month, for example, Jackie, who is also supported by My Life My Choice was travelling independently on a bus. On boarding, the driver asked her to reverse her wheel chair into the disabled space, but didn’t give her time to reverse before moving off. The jolt as he pulled away meant Jackie’s jacket got caught and tore. She pressed the bell well in advance of her stop but the bus driver didn’t stop until she was past where she wanted to get off (he told her she hadn’t pressed the bell well enough in advance).

The End to End trip schedule takes in Glasgow, Manchester, Swansea and Paddington before arriving in Land’s End on Sunday August 25th. In each place, the travel champions will meet local learning disability organisations.

My Life My Choice hopes to publish an easy read document about learning disability and public transport as a result of the End to End campaign and you can follow the trip on Twitter.

* More information about the trip can be found on the charity’s website and you can view a gallery of photographs about the trip here here.

How do you raise “good Muslim British citizens”?

Parenting, at the best of times, can be as difficult as it is rewarding, but what happens if what you take to be your religious values muddy the water when it comes to raising your family? If you’re brought up thinking your religion bans any talk about sex, what do you do when your child asks where babies come from?

This kind of question was at the nub of a recent course for Muslim parents – Islamic Values and the Parenting Puzzle – I reported on. Some of the cultural “learnings” that were mistaken as religious teaching included issues such as not talking about sex or ignoring the child’s opinion about family matters.

The course stems from the work of a very forward thinking family practitioner called Arifa Naeem. Naeem used an established course devised by the charity Family Links, which trains parenting support workers, and added extracts from the Qur’an and the Prophet Mohammad’s sayings.Family Links now employs Naeem

One concern among parents is how to reconcile western values and life with their religious or cultural upbringing. The course, as Naeem says, supports parents towards adopting positive practices consistent with Islamic religious values, helping them be “good Muslim British citizens”.

Although I did the story before the murder of Lee Rigby and the ensuing reports about a rise in Islamaphobia, anyone with any assumptions about Islam and Muslims would do well to listen to the words of the many mothers on the course, with their unanimous aim of raising “good Muslim British citizens” and reconciling their eastern heritage with their western context.

I’d like to thank the women, like Ifat, who shared their family stories and their time:

Ifat Nisa feared her teenage son was hanging out with “the wrong crowd”, drinking, smoking or experimenting with drugs – but when she questioned him, they always argued.

Brought up not to challenge her own parents, Nisa was confused about how to parent an apparently disrespectful teenager. She heard about a parenting course at her mosque in Slough, Berkshire, and despite initially dismissing it – “My reaction was ‘it’s not Islamic'” – when she discovered it was tailored for Muslim parents, decided to try it out.

Nisa recalls: “I was worrying I wasn’t a good parent. I was confused why my son was reacting like he did; the course helped me understand his emotions and feelings.” Nisa learned about empathy and stopped blaming and constantly questioning her son. She credits the course for their strong, healthy relationship now.

You can read the rest of the piece here.

Tailor-made technology: systems and support in social care

Julie Heightley was so worried about her son Thomas suffering an epileptic fit at night that for two years she slept on a camp bed outside his room. The broken sleep and constant supervision of Thomas, who has autism and global developmental delay, was adversely affecting both Julie’s role as a carer and any prospect of independence for her son.

I came across Julie and Thomas’ story while researching a new report published today by the Voluntary Organisations Disability Group and the National Care Forum.

Now, thanks to a discrete network of wireless sensors dotted around the four-bedroom family home just outside Wolverhampton, Julie and Thomas, now five, are enjoying what Julie calls “a new lease of life”. Since the home was kitted out with the assistive technology two years ago, Thomas has been able to safely play and walk about the house independently without needing his mother’s 24-hours-a-day supervision. As well as having a slightly more hands-off approach to her five-year-old, Julie, a lone parent, has more time to spend her two older children who are in their teens.

Julie and Thomas with his older siblings
Julie and Thomas with his older siblings

Assistive – or personalised – technology includes a wide-range of supportive but unobtrusive services and equipment, from personal alarms for elderly people, to seizure monitors and more sophisticated fingerprint recognition systems that allow you to open the door without keys. It can also include computer software, hand held devices or video call systems that increase social interaction and family contact.

As fans of such services and systems point out, the traditional view of this technology is that it involves a medical and prescriptive approach (see the comments on the related VODG blogpost), but the key issue is to bring it to the consumer market, widen its use among the general public and raise awareness about its potential.

As the publication stresses, the social care sector has embraced a huge amount of innovation in assistive technology, using new methods to complement the physical work of support staff. it is transforming lives for the better. But the use of such services, systems and equipment does not enjoy the higher profile of our counterparts in the health sector, despite the fact it is entirely in line with the “person-centred” approach that care providers are working towards and encourages choice, control and independence – social care watchwords.

Today’s report, with its real life stories of how technology is transforming the lives of vulnerable people, aims to change that: “Put simply, technology is part of our modern landscape. We use it for work, leisure, at home and on the move. It makes our lives easier. People with life-long disabilities or age related conditions should share that experience, benefitting from the advantages that tailor-made technological support can bring.”

* Read more on the VODG website and download the report Using assistive technology to support personalisation in social care

“It’s important that while I’m having fun, Stanley is having a great time too”

Stanley Holes is, says his little brother Albie in the brief video diary above, simply “the best brother I could ever have.” Albie’s love for his 16-year-old brother is reflected in this short film which I just watched and wanted to share. Produced for Autism Wessex, the charity that supports Stanley, it stands out for me because it’s presented from a sibling’s perspective: “I love him very much,” says 11-year-old Albie of his teenage brother, “and he is very important to me and my family.”

Diagnosed with autism at three, with no speech and, as Albie says, “little understanding of the world that surrounds him”, Stanley hadn’t been to an autism-specifc setting until last year when he started Autism Wessex’s Portfield School in Dorset. Underlining the vital need for autism-specific support, only now is Stanley receiving proper speech and language therapy – and he’s thriving on the specialist care and education. In one of the previous schools he was at, his family was told that as Stanley was autistic, there was no point in him getting speech therapy since his condition made communication impossible.

Stanley was regarded as a child whose behaviour challenges, his complex needs mean he is prone to anger and violent outbursts (“episodes”, as Albie explains in the film). Yet his story shows that even in complex cases, positive outcomes are possible.

Stanley has started to shows more awareness of his surroundings, and is becoming more independent, using signing with more confidence. Younger brother Albie, meanwhile, is more assured about talking to people about his older brother and how autism affects him and his family’s life.

Stanley’s family realised after a few short months that he seemed much happier at his new school compared to previous special needs environments; as Albie says in the film, “It’s important for me to know that while I’m having fun, Stanley is having a great time too.”

Stanley is a weekly boarder at Portfield, coming home for the weekend, where Albie his parents, plus fellow siblings Mabel, 15, and Elsie, 7, are keen to spend time with him. Before starting at the school, as their father Paul says, Stanley’s behaviour was having an adverse impact on his siblings. Now, says Paul, the change in the family dynamic and in Stanley is “the difference between living and existing”.

Young, free and single-minded

Young people who have helped transform their neighbourhoods despite are among those being celebrated in today’s Prince’s Trust annual awards.

Amid recent figures showing youth unemployment has nearly hit 1m, it is inspiring to hear how teenagers and young adults are determinedly pursuing work, training or volunteering, despite the kinds of experiences that would lead some to write them off as “hard to reach”.

The trust’s Celebrate Success event honours young people who, supported by one of the trust’s many programmes, have overcome challenges like homelessness or unemployment to make a difference to their communities or to the lives of others.

The community impact award in particular (there are various categories in today’s awards) recognises how young people around the country have breathed new life into a neglected area of a block of flats, launched a support scheme for young carers and turned a disused part of a children’s centre into a a play space. While their projects might not have led all of them into full-time employment, many are on a more secure path to independence.

Young people in Glasgow transformed a disused space (photo: Prince's Trust)
Young people in Glasgow transformed a disused space in Helenvale Flats (photo: Prince’s Trust)

A group of eight unemployed young people, supported by the Prince’s Trust Get Started programme, revitalised an area in a block of flats in the deprived east end of Glasgow. They created flower beds and benches, built a willow hut for children to play in and sprayed a giant snakes and ladders board on the ground.

The Caring Alone project helps support young carers.
The Caring Alone project helps support young carers.

Steven Bland was among the four young carers who created the Liverpool-based Caring Alone Support Service, backed by a cash award from the trust, for a Community Cash Award. They matched the funding with support from other organisations launched the online support support for young carers, offering advice and a forum for information exchange.

A team of young people from Birmingham helped improve Fox Hollies children's centre .
A team of young people from Birmingham helped improve Fox Hollies children’s centre .

While participating in the Prince’s Trust Team programme, 10 young people made a disused outdoor space at the Fox Hollies children’s centre in Birmingham into a beach play area. They raised the cash through donations from local businesses and activities including bag packs and car washes.

On loss and learning

Lol Butterfield, mental health campaigner
Lol Butterfield, mental health campaigner
I have lost too many friends and service users through suicide over the past 30 years.

We examine our consciences to see if we could have done more to prevent such deaths, that’s a normal human reaction. It’s what empathy and compassion is about. Being a nurse, as I am, is irrelevant, it is about being human. We consider those left behind to face the future and what support they need. It becomes a tragedy that spreads a pond like ripple of despair and pain. Nobody is immune from this rippling effect.

Often in our hour of need we turn to those who we know can provide support. Those who can help us to work our way through the grieving process. Sometimes just a listening ear or supportive approach by anyone is suffice. Sometimes more professional help is required. Everyone is different. We are all unique. We all deal with the inner pain following a death in the way we know best, our resilience levels dictate our strengths and coping abilities in times like these.

Recently, the All-Party Parliamentary Group (APPG) on suicide and self-harm prevention called for councils to develop and implement suicide prevention strategies. The APPG report revealed that more than a quarter (27%) of English authorities do not have any such specific strategy. As the APPG said: “The existence of any such plan is open to chance rather than determined by any national policy.”

The APPG wants councils to be obliged to develop a suicide prevention plan led by the director of public health or senior member of the public health team: “The plan should include provision for self-harm prevention and those bereaved by suicide.” As the group stressed, more than 5,500 people die by suicide each year in the UK and for people aged 15-24 it is the second largest cause of death after road accidents.

While I support anything that raises awareness of self-harm and suicide, I strongly feel that the responsibility for suicide prevention should not just be down to the passion of area ‘champions’ who have a particular interest in this. I believe all local authorities must seriously address suicide awareness, and prevention, as a matter of urgency. This is of particular relevance with increasing self-harm and suicide rates taking into account the recession and how this impacts on peoples lives at a personal level.

Mental health promotion is now under the control of local authorities, although personally I believe we all have a responsibility if working in social or health care to positively promote mental health.

As well as the personal costs to each family of a suicide the financial costs through lost earnings etc for a lifetime run into many thousands of pounds. As a compassionate and humane society I believe we have a moral duty to have in place coordinated strategic approaches to address the issue of suicide prevention involving all stakeholders. The NHS, local authority, the Police, The Samaritans, Cruse Bereavement counselling, community mental health support groups, and so on. In fact the list could be endless because in reality so many people are potential victims of suicide, directly or indirectly.

From a personal perspective, following my redundancy last summer my mood dipped. In fact it plummeted. Voluntary work at that time ensured my self esteem and confidence would stay above the water. I experienced ‘dark’ thoughts myself brought about by feelings of worthlessness and hopelessness finding myself unemployed after a lifetime of work.

The adjustment to the situation I now found myself in did not come easy. My intensive role in advising Zak Dingle in his depression storyline in the Soap Emmerdale conversely helped lift my own mood. I felt valued because I knew I was making a difference. I knew that I was raising awareness of mental illness to a large viewing public in a sensitive and non stereotypical way. Winning the Mind Media Awards a few months ago for this storyline further boosted my self-esteem even more.

Zak’s symptoms were intended to educate, encourage empathy, and promote more understanding of depression and how people can reach the point of suicidal ideation. They were intended to highlight how mental illness not only affects the person but also the loved ones of that person. I invested much time and effort to try to get this right and confess it wasn’t perfect, but nothing is. It helped me considerably as much as it helped others I had hoped to understand more and assume less about mental health.

I was also asked by a good friend to consider becoming more involved with Stamp Revisited, a wonderful, life changing for some, advocacy service on Teesside for those affected by mental illness. I had been a member for many years and applied to be on the group’s executive comittee. I was accepted.

This also boosted my self-confidence and esteem and played no small part in helping to lift my mood to a more acceptable level. Stamp Revisited is a charity and, as such, relies heavily on donations and the generosity of its volunteers. its aim is simple. To help those who struggle with mental ill health, any one of us at any time in our lives could be in this position. It would be fair to say their work has at times saved lives.

Knowing someone is there in your darkest hour can help to steer you away from the depths of despair. Specialist support can offer a more objective view on improving your personal situation that may have been lost in the spiral of depression. Insight can be lost in severe depression. Taking your own life can then become an option you would not have considered, ever. Knowing people are there to listen makes such a difference and words cannot explain how life saving this may be.

* The Samaritans’ Media Guidelines aim to promote the sensitive reporting of suicide and self-harm incidents