Accessing Public Services Workshops for Professionals

Following on from the huge success of our Accessing Public Services Workshops, we are launching sessions specifically for professionals.

The workshops run from 10am -2pm and will help professionals to use our Accessing Public Services toolkit, helping to solve any difficulties families may be having with statutory agencies.

While UK law provides powerful rights to accessing health, social care and education support services, the law can be complicated and difficult to understand.  This workshop can support you by unpicking potential problems and giving you the tools you need to resolve them. Case studies from our LEaP project are used to help develop effective strategies to access services that families need, which are reinforced with a number of template letters to help challenge decisions made by public bodies. Ultimately, it is not in the interest of public bodies to have these commonly occurring problems and that most of these are capable of being resolved without great expense to those involved.

All of our workshops have been accredited by the CPD Certification Service. This means that our information workshops have reached the required Continuing Professional Development standards and benchmarks and that the learning value of each has been examined to ensure integrity and quality.

To find out more or to book a workshop please contact derekt@cerebra.org.uk

For further information or to book a workshop, contact Derek Tilley at derekt@cerebra.org.uk.

Star Volunteers Take on Fun Run

Samuel and Angel after the race

Samuel and Angel after the race

On 24th March our star volunteers Samuel Turner and  Angel Jolly took part in the Brentwood Fun Run to raise funds for Cerebra.

Samuel and Angel have done lots to help Cerebra since they first starting volunteering for us, from holding bake sales to placing our collection boxes in local businesses. But they decided they wanted to try a new challenge – that’s when they decided to take part in the Brentwood Fun Run.

The event, part of the Brentwood Half Marathon, was originally meant to take place on 18th March but had to be postponed because of snow. Not to be deterred by the weather, Samuel and Angel finally managed to complete the race the following week.

As well as raising money for Cerebra, the pair each had very personal reasons for rising to the challenge. Samuel was honouring his best friend who sadly passed away in 2009 and Angel was running for her brother Connor who has Cerebral Palsy.

The pair have a Just Giving page through which you can show your support.

Adapting life – a family’s story

One of our families has written a blog post about the many adaptations families with children who have disabilities have to make.

“Several years ago we were referred for an assessment by an OT to look at possible adaptations we might need to our house to make things more suitable for the girls needs then and in the future. We were in fairly uncertain times with no clear idea of which way things would go health wise, so it felt like we had to consider advice from any professional willing to offer it.

Following her assessment there were some fairly obvious things that were going to make a tangible difference once completed, like an easily accessible shower with a seat to rest weary legs. Level access to the property for wheelchair access and to prevent trips and falls when crossing the threshold. There were also some that came as a shock! Had we thought about how to get upstairs as things got worse? Would our stairs be suitable for a stairlift or if needed could we accommodate a through floor lift? These weren’t the conversations we ever thought we would be having.

As it happened she was a tad over zealous and the larger adaptations, thankfully, have never come to fruition……and breathe. But it certainly adapted our thought processes and our minds went on a journey of worry and stress that we hadn’t necessarily prepared for and actually weren’t needed.

But as I sit back and consider the past 11 years the adaptations we have had to make are many, but to the outsider many maybe frustratingly hidden leaving folk wondering what all the fuss is about!

Some of the things that have made a real difference to quality of life have been fairly unsophisticated like rubber bands round utensils and tubigrips on their arms to improve the messages sent back to the brain so eating and writing is more controlled. Getting seating and sleeping spaces right have prevented pain and spasms and enabled rest and ability to stay still! This might have been with bespoke specialist seating that come at an eyewsteringly high price or, with trial and error, the correct cushion or pillow shoved into various corners to prevent bumps or prop up legs!

We no longer have an old icecream tub to hold our household medications…we have a whole double cupboard dedicated to the bottles, tubes of creams, spacers, inhalers, dosset boxes and all other necessary medical paraphinalia that keep them well & sparkly!

We have walls decorated with visual resources painting a picture of how the days are (in theory) going to pan out. Not too detailed so minor changes can’t be coped with, but detailed enough to be the lynchpin for the day. Essential to help with the difficulties with transition and inherant need to control…ahhh! Visual prompts to accommodate one child with short term memory difficulties & the other struggling with executive functioning & concentration.

The lounge which in theory is our calm space is filled with peanut balls, exercise mats, and a human sized bowl for spinning and chilling in that provides just enough sensory feedback to keep our sensory bunny calm! Though doesn’t necessarily calm everyone else as they create an undesirable trip hazard in the thoroughfare!

Adaptations to meal times to accommodate the sensory culinary preferences (cottage cheese, chickpeas and anything burnt!) And a constant supply of crunchy snacks, chewing gum or chewy items to prevent any more bite marks in furniture or chewing of clothes due to the constant oral sensory seeking behaviour.

Normal planning doesn’t do for us! Logistical management takes on a new level considering fatigue, sensory overload, medications, splints, ear defender’s, weighted jackets, visuals and also how to practically manage 2 children in wheelchairs when their maybe only one adult!

Adapted bed time routines, that involve so much more than bath, teeth, pj’s story & bed.

Adapted life plan! Not just avoiding pomotions & working part time hours, but a whole different career, a whole different mindset. How do you get the flexible working that takes into account the days off school due to frequent sickness or school refusal, the micro management of meetings or appointments, tests & all the necessary paperwork, DLA, EHCP, carers assessments? Oh yes & the financial restrictions put on you when you receive carers allowance! You can have it if you care for someone more than 37 hours, but you can’t claim it twice for looking after 2 people & by the way you can only earn  £100 a week! If you have a career that you trained hard for actually getting a contract for so few hours is nigh on impossible! The solution I have fallen into is effectively being my own boss, working hard when I can so it doesn’t all fall apart when I can’t! Trouble is that level of juggle sometimes leads to me falling apart!

Emotional adaptations you have to make along the way can have massive impacts. Relationships are tested as you effectively tag team the caring role, no time to talk or process the latest appointment, diagnosis or meeting about school. The different timings in the processing of it all as one crashed & grieves the other has to up the ante! Friendships are tested and sometimes don’t survive, so a new support network formed. Extended family roles adapted as the expected role of grandparents is morphed into respite carers, and comes with it a whole set of logistical & emotional challenges.

But then there’s the positive adaptations that have taken place. The appreciation of the smaller details, celebration of the moments when unexpected milestones are achieved that otherwise may have been taken for granted! A different level of understanding your child inside & out! The involvement of family to achieve a special trip means they get to be part those intimate moments that they may not otherwise have been part of…Disneyland, trips to London.

The adaptation of our attitude on life! Live for today not for tomorrow, learning to dance in the rain & not waiting for the storm to pass, remembering it’s not what happens that’s important but what you do about it! But really learning that you can’t change the situation you haven’t chosen to be in, but you can change the way you think about it and embrace the necessary adaptations rather than fight against them!”.

You can read this, and other blog posts, here.

Captain Imogen and her brave triathlon crew!

Captain Imogen

Captain Imogen

The Cerebra Innovation Centre design team will be embarking on a triathlon adventure this year with their very own triathlon pilot, Imogen Ashwell-Lewis, in charge! Their first target is the Swansea triathlon on 20th May.

The team met Imogen a few years ago when they designed and made a beautiful tiny wheelchair that allowed her to move around her home and play with her brothers and her toys. The additional independence it gave her was amazing, as was the friendship they developed with Imogen and her family.

Now 6 years old and having been turned away from many sports due to her cerebral palsy,  Imogen leapt at the chance to pilot the CIC crew.

While the Innovation Centre team have learned lots about triathlons through designing and making the equipment for Poppy a couple of years ago, they’ve never actually competed in one! So this will be a chance for them to put their own equipment to use.

The bright idea came from Ross Head: “When we thought about finding a triathlete/pilot for this year, I just mentioned that maybe we should start a team and the guys agreed – which I had not expected! That was the day Team Cerebra was born!

“Dan is a strong swimmer and surfer so it made sense that he would swim and tow Captain Imogen in the boat. Gerallt loves cycling and is keen to tow Imogen to victory. Of all the sports I do, running is not one of them. So I’ve taken one for the team and am learning to run, training on the streets where I live until I am fit enough to venture further afield”.

The Innovation Centre Team

The Innovation Centre Team

“I am super excited to dust off my speedo’s and swim with Imogen and the team. But I need to get practicing as my swimming skills have been replaced with a belly. To the pool I go! We’re really looking forward to it, and I think we stand a good chance at winning!” (Designer Dan)

We’re looking forward to following them on their journey to glory and hope that Imogen knows what she’s letting herself in for!

If you would like to show your support to the team, you can donate by texting CICT18 and the amount you would like to donate to 70070 e.g. CICT18 £5 to 70070.

Improving the well-being of young children with learning disabilities: A Parent’s Guide

We’re looking for people to take a look at a brand new booklet on improving the well-being of young children with learning disabilities, and to give their feedback.

Researchers at the University of Warwick are working with a group of parents of children with learning disabilities, Mencap, the Challenging Behaviour Foundation, and Cerebra to write a guide for parents to support the well-being of young children with learning disabilities.

The booklet combines what we know from research with parents’ personal experiences. The family activities within the booklet have been shown to be important for supporting the well-being of children with learning disabilities.

There are four chapters in the booklet, and parents are able to use the booklet flexibly depending on what information they want to know at the time. The chapters are about:

  • How to look after yourself
  • Organising family life
  • Spending time together
  • Activities to do with my child with a learning disability at home and outside

You can download a copy of the booklet for free here.

Please tell us what you think about it here.

Thank you for your help.

Research Advisory Committee – Call for applications

We are recruiting to our Research Advisory Committee. In this article you can find out more about what Cerebra does, the types of research we support, the role and responsibilities of the committee, your eligibility and how to apply.

Cerebra’s role

We believe that every family that includes a child with a brain condition should have the chance to discover a better life together. We listen to families that have children with brain conditions. We use what they tell us to inspire the best research and innovation. Then we help them put the knowledge into practice so they can discover a better life together.

By ‘brain condition’, we mean any neurodevelopmental disorder (NDD) that affects the developing brain, including those caused by illness, genetics or traumatic injury. Brain conditions include (but are not limited to) autism, ADHD, Down’s syndrome, learning disabilities, cerebral palsy, epilepsy and developmental delay.

Our key values are summed up in three key words:

Positive: our optimism helps families see past every barrier.
Inquisitive: a spirit of relentless discovery drives everything we do.
Together: our researchers, practitioners and families go further when they travel together.

Current clinical practice identifies each condition individually with its own set of identifying characteristics, but many neurodevelopmental disorders (NDD’s) occur together and/or share similar risk factors, behaviours and challenges. Thinking is gradually changing and ‘multi-morbidity’ is accepted as the norm. We work across rather than within NDD’s, giving us a unique perspective within the charity research sector.

The types of research we support

At Cerebra, we support two research approaches:

  • Research aimed at reducing the prevalence of preventable disabling conditions and thereby limiting the number of children whose health and wellbeing are likely to be adversely affected.
  •  Research that addresses a range of measures to ensure family needs are recognised and met.

Our current research portfolio reflects both approaches. Our research grants run from 1st January 2013 to 31st December 2019 and over that period, we will invest £4,213,689 in research.

Role and responsibilities

The role of the committee is ultimately to advise Trustees on the relative merits of particular pieces of research. As such, you will be invited to participate in grant application reviews, evaluate the impact of our current research and provide scientific advice which will inform Cerebra’s research strategy.

Grant reviews will involve reading, evaluating, submitting scores and comments on grant applications within an allotted time frame, and attend meetings.

Evaluating the impact of our current research will involve reviewing documentation and potentially site visits.

This is a voluntary role but out of pocket expenses, including travel and subsistence to attend meetings and site visits, will be paid. Commitment is crucial and time constraints will apply to allow us to complete our work and deliver on our commitments in a timely manner.

Are you eligible?

Applications are invited from individuals with a publication record in research (clinical and applied research in the fields that fall under Cerebra’s remit), success in obtaining research grants / awards and a willingness to devote the necessary time.

Posts are formally available from April 2018 and appointments are for a three-year term in the first instance.

Individuals who are interested in applying for one of these posts, or just want more information are encouraged to contact Georgia Mappa at GeorgiaM@cerebra.org.uk with any queries.

The terms of reference and governing documentation for this committee can be downloaded here.

How to apply

Applicants should submit a brief CV giving details of previous key posts, current post, roles in relevant committees and six most relevant publications. This should be accompanied by a written statement (maximum 1,000 words) which covers relevant previous experiences and expertise.

Applications should be submitted by 16th April 2018 and directed to Georgia Mappa at GeorgiaM@cerebra.org.uk

Successful applicants will be invited to join a welcome meeting with Cerebra staff.

New Books on Autism in the Library

library books

We have had a lot of requests to borrow books explaining autism recently, so we have purchased some brand new ones.

  • L6732 – A Parents’ ABC of the Autism Spectrum by Stephen Heydt published 2017
  • L6741 & L6742 – Talking with Your Child About Their Autism Diagnosis: a guide for parents by Raelene Dundon published 2018
  • L6743 – Autism Spectrum Disorder (ASD) Autism Explained by Frederick Earlstein published 2017
  • L6745 & L6746 – Understanding Autism: the essential guide for parents by Katrina Williams published 2018
  • L6747 – The Parents’ Practical Guide to Resilience for Children aged 2-10 on the Autism Spectrum by Jeanette Purkis published 2018
  • C0275 – Creating Autism Champions: autism awareness training for Key Stage 1 and 2 by Joy Beaney published 2017 – includes photocopiable material and downloadable resources
  • C0290 – The ASD and Me Picture Book – a visual guide to understanding challenges and strengths for children on the autism spectrum by Joel Shaul published 2017 – includes photocopiable worksheets

If you would like to know more about our postal lending library please email Jan the Librarian on janetp@cerebra.org.uk or visit our library page.

Countdown to Marathon Glory!

Dustin

Dustin is running the London Marathon in April

American Dustin Erhardt is making his final preparations for this year’s London Marathon on 22nd April. Everyone at Cerebra will be cheering him on as he runs to raise money for Cerebra and to raise awareness for brain conditions.

Through the group I Run 4 Dustin has been partnered with a buddy who cannot run himself because of disability.

Dustin explains: “I have had the honour of being matched with an amazing little boy named Samuel, who has autism. He has become like a nephew to me and we have exchanged pictures, videos, medals, encouragement and so much more. In training, with every mile that got tough, I knew he was right there with me encouraging me to keep going.

Cerebra has given me the amazing opportunity to meet Samuel and run the London Marathon with him there cheering me on in person. Samuel’s little sister Phoebe has a rare genetic condition and she suffers from epilepsy, autism, delayed speech and a hearing condition. So for me, supporting a charity like Cerebra is not only important for all children it is very near and dear to my adopted family. Together we can bring awareness and support for all of those that live with brain conditions”.

The day will be particularly special for Dustin as he will be meeting his buddy Samuel for the first time. Samuel is so excited that he will be there with his family on the day to proudly watch Dustin cross the finish line.

“I run because I can. When I get tired, I remember those who can’t run, what they’d give to have this simple gift I take for granted, and I run harder for them. I know they would do the same for me.”

Dustin is currently at 96% of his fundraising target and it would be great if he could reach it during his trip to the UK. You can support Dustin through his Virgin Money Giving page.

Delivering legal rights through practical problem-solving

In this article we take a look at our Legal Entitlements and Problem-Solving (LEaP) Project – why we started it, what we do, what we’ve achieved so far and the longer term impact of our work.

Why we started the Project

Disabled children and their families sometimes need extra support in order to have a normal everyday life – for example, help with bathing or eating, moving around or communicating. Local councils and the NHS have legal duties to meet these needs by providing support, such as someone to help with personal care at home, specialist equipment, adaptations, short breaks or therapy services. However, we know from our work with families that, in practice, parents often struggle to get the right support for their children and a lack of support can harm the health and well-being of the whole family.

The LEaP Project aims to find out why families struggle to get the help that they’re legally entitled to and what can be done to change things. We want to learn more about the problems families face, so that we can work out ways of overcoming them and helping families to get the support they need. The Project is led by Luke Clements, Professor of Law and Social Justice at the University of Leeds.

What we do

We invite families to tell us about the problems they face in getting the support they need. With expert support from the team at the University, we provide legal information and advice to help families overcome those difficulties. We help families to understand what their legal rights are and what they can do if they fail to get the support they need. We also use the information we get from individual cases to write template letters, factsheets and guides, which can help other families in similar situations.

When we see from our casework that several families are having similar problems, we ask our student volunteers at Leeds to study this problem in more detail (often by doing a survey) and then produce a report with ideas about how policy and practice can be changed to avoid these problems in the future.  Past projects have looked at short breaks, school transport and disabled facilities grants.

Then we use the knowledge gained from our advice casework and student-led projects to improve our understanding of why these legal problems occur and to work out practical ways of overcoming them. We want to find out which problem-solving techniques help families to cope better with the challenges they face and how councils and the NHS can change the way they work.

What we’ve achieved so far

(1)  We’ve attracted funding from the Economic and Social Research Council and from Leeds University, which has enabled us to fund a PhD student, develop our Problem-Solving Toolkit (see below) and fund a research assistant post at the University.

(2)  In 2013 and 2014, we published compilations of our advice letters (the ‘Digests of Opinions’) to help other families in similar situations.

(3)  In 2016, we published a report about ‘short breaks statements’ (these statements are published by councils in England and explain how families can get breaks from their caring responsibilities). The report considered how accessible and accurate these statements were.

(4)  We published a guide for families in 2016 called the “Accessing Public Services Toolkit”. The Toolkit describes some of the common problems families face in dealing with councils and the NHS and suggests ways of solving those problems. A second edition was published in 2017, along with a separate version for families in Scotland. We’ve developed an ongoing programme of workshops across the U.K. to share the Toolkit with parent groups.

(5)  In 2017, the student volunteers at Leeds interviewed a small number of families who had applied for a disabled facilities grant to pay for home adaptations. We published a report called “Disabled Children and the Cost Effectiveness of Home Adaptations and Disabled Facilities Grants”, which considered the benefits of investing in these adaptations, including cost savings and improvements in families’ well-being. The report was launched at a conference at the University of Leeds on 12 July 2017 and resulted in meetings with senior members of Leeds City Council, the NHS Leeds Clinical Commissioning Group Partnership and Foundations (the national body for Home Improvement Agencies), along with an article in the Guardian newspaper.

(6)  On 12 July 2017, the Project Team also launched a research report called “Local Authority Home to School Online Transport Policies: Accessibility and Accuracy”. This report explains how difficult it is for families to find accurate information about school transport on council websites and how some transport policies are more restrictive than they should be. As a result of the report, the team met with representatives from the Department of Education and worked with the charity, Contact, on their inquiry into school transport, including giving evidence to a select committee at Parliament. The Department for Education has decided to review its guidance for councils on school transport and it is planning to produce an accessible template for council websites, so that school transport information is more easily available to families. The team has been asked to share its research data with the Department to help with this work.

(7)  As a result of our casework, the Welsh Government has agreed to make its guidance on continence products more clear, so that families are no longer told that they can only have a maximum of 4 products a day.

(8)  We’ve helped families in England and Wales get the services they need – and persuaded councils to change their policies so that other families aren’t disadvantaged. We’ve built on our casework by publishing parent guides, for example on school transport for England and Wales, so that we can share the lessons we’ve learned with many more families. We’ve also published a series of template letters and factsheets for parents to use.

Longer term impact of our research

We know that our work with families helps them to develop the knowledge, confidence and skills they need to get support:

  • “Thank you for all your help and support. I don’t think I would have got anywhere without it.”
  • “We appreciate the continued support to empower us to go through this process.”
  • “I really do appreciate your support. I hadn’t realised there was so much info available to research.”

We will continue to support families and draw on their experiences to help us plan our research and publish resources which help other families in similar situations.

In 2018, our student volunteers will look at three research topics – how difficult it is to apply for a disabled facilities grant, how well the direct payments system works for disabled people and what social care charges disabled people have to pay for their care costs.

We also want to investigate how policies and practices within councils and the NHS can sometimes make it more difficult for families to get the support that they’re entitled to. We’re developing a detailed research plan, which will involve working with councils and the NHS to explore why these barriers exist and what can be done to remove them. We hope to get grant funding in 2018 for this important study, so that we can help to introduce changes within these organisations which will make it easier for more families to get the support they need.

You can find out more about our LEaP project here.

Dr Ross Head to talk at Naidex

Naidex is Europe’s largest disability and independent living event and will take place at the NEC on 25th and 26th April.

We are delighted that Dr Ross Head from our Innovation Centre (CIC) has been asked to speak at such a high profile event. His seminar will take the form of a case study review of three CIC products: a seated tandem surfboard; triathlon equipment which enables a young girl to participate with her father;  a horse riding helmet for a young man with unique head shape. He will also be giving an overview of some the great products his team design and make.

The event is completely free to attend and you can find out more and book your place here.

You can also follow the event on social media #WeAreAble.

Ross graduated in Product Design BSc with first class honours in 2001, and subsequently a PhD in Digital Design Methodology and Glass Product Design at Swansea Metropolitan University. He then became one f the founding members of staff for Cerebra Innovation Centre, whilst lecturing part time within FADE.

Dr Head has expertise in all areas of Product Design, specifically but not limited to design for children with additional needs including R&D, ergonomic studies for children with differing postural and dimensional needs, CAD, field testing, prototyping and manufacture.

He also liaises with industry partners to secure licensing agreements and develop manufactured products.

Furthermore, Dr Head was involved as Company Supervisor for a PhD scholar under the KESS scheme. This revolved around data capture for product concept design for children with additional needs.