Consultations – March 2015

Wellbeing in Parents of Children with a Learning Disability/Developmental Disorder
Online survey of parents and carers by Fiona McCrohan, Edinburgh University.

No voice unheard, no right ignored
A consultation for people with learning disabilities, autism and mental health conditions, about strengthening rights and choices for people to live independently in the community.
Closing date:  29 May 2015 (Dept of Health).

Care Stakeholder Study
Questionnaire on values, beliefs and experiences of people who have an interest in early education and care, including parents and guardians.  It is open to people in various European countries including England.  It takes about 25-30 minutes to complete (CARE project, c/o Aarhus University, Denmark).

Resources – March 2015

Microsoft Word - Document6What to expect, when?
A parents’ guide to development and learning in the first five years,  (4Children).

Memory aids, reminders and brain training
Video and text presentation by Dr Sallie Baxendale, (Epilepsy Society).

Free courses, including some related to children, health, care and education (Open University).

Aiding the Transition
An article by Kate Duggan describing the use of communication aids to help students who are moving beyond school, (SEN Magazine).

Careers Advice
The National Careers Service publishes a variety of guides designed for children and their parents to think about their qualification choices and future careers.  They include a new one for parents of girls aged 12-16, “Your daughter’s future”.

Pay Your Way
Information about sending and receiving payments, e.g. from bank accounts, possibly useful for young people learning independence skills, or for those who will continue to need other people to carry out transactions for them (Payments Council).

Hands Up!
An effort to prevent and inform about bullying of young children, notably in nurseries and schools.  Website section for parents and early years professionals and one for children, with background information at: (Immediate Media Company Ltd.).

Preventing bullying: a guide for teaching assistants
A guide that includes strategies for stopping the bullying of children with special needs from occurring, (Anti-bullying Alliance). There is also a related free online training course at:

The Care Act:  assessment and eligibility
A collection of resources on eligibility for care and support and the duties of local authorities.  Of interest to service users as well as practitioners (Social Care Institute for Excellence.  The Care Act affects over-18s and parent-carers of under-18s.  It applies to England and Wales mostly, although parts of it apply elsewhere).

Challenging cuts to short break services
A legal resource for parent-carers of disabled children (Every Disabled Child Matters).

Support services in Scotland
A summary of many of the services and advice / information websites available, with links, e.g. welfare rights, mental health, housing (Food Aid Scotland).

Retail website specialising in technology for independent living.

Family Life
New “family life” section on Contact a Family’s website to help family members of children with disabilities to support each other and work together.

My CAMHS choices
A website designed for young people who have been referred to Child and Adolescent Mental Health Services (Evidence Based Practice Unit and others).

Internet Crime
“Internet of things”: guidance on the steps to take to guard against some of the possible crime risks presented by the growing use of smart devices, (Home Office).

Events – March 2015

EventsSocial Skills
Teaching social skills to children and young people with autism or Asperger’s. One-day course, London 16 April 2015 (cost:  £55 for parents and carers), (Ambitious About Autism).

28-30 April 2015, NEC Birmingham
Exhibition of products and techniques for independent living, moving and handling and other things that come under the heading of Occupational Therapy services, (free tickets in advance).

Short Breaks and the Law – Ron’s Story

criminal-law-policyWe share the story of Ron who has benefitted from the work of the Cerebra funded Legal Entitlements Research Project based at Cardiff Law School.

Short breaks care is often a vital support need for families with disabled children. Unfortunately some local councils do not always appreciate that they are under a legal obligation to provide such support where it is required.

The ‘Legal Entitlements Research Project’ at Cardiff Law School, which was established with funding support from Cerebra has published a Digest of Cases it has considered – and this includes advice concerning access to respite care. ‘Ron’s story’ (not his real name) is summarised below:

Ron is seven and has Global Development Delay (GDD), the symptoms of which have become increasingly difficult for his parents to manage as he has matured. The symptoms include difficulties with behaviour management and aggressive episodes which are having an adverse impact on his siblings and the wider family unit.

Ron’s social services’ assessment identified a need for him to be cared for whilst his parents had a break (i.e. a need for ‘respite care’). Ron’s parents asked for a Direct Payment to enable them to purchase this care themselves but this was refused by the council because Ron had not had a formal diagnosis of having a ‘disability’.

The legal opinion provided by the Legal Entitlements Research Project clarifies the duty on councils in such cases and in particular that in this case the requirement for a formal ‘diagnosis’ was not lawful; that parents in such cases have an enforceable legal right to a direct payment and that the council had failed to advise them (and their siblings) that they were also entitled to have their needs as ‘parent carers’ / ‘young carers’ assessed.

The full case Report is at

Further Information

The Legal Entitlements Research Project

For information on how to access the Project,

The Digest

A copy of the full Digest (which includes Ron’s case) is at


Quiz Evening Raises Over £4,000

CEO Chris Jones with staff from foot ansteyLaw firm Foot Anstey recently held their annual charity quiz evening and chose Cerebra as their charity of the year.

The evening saw 25 teams battle it out to win the quiz, including a team of Cerebra’s brightest members of staff. In the end, the team from Francis Clark emerged victorious but team Cerebra came a very respectable fourth!

After the quiz, there was an auction with some fabulous lots up for sale including a hot air balloon ride and a stay at the Stradey Park Hotel.

Cerebra’s chief executive Chris Jones said: “We are so thankful to Foot Anstey and everybody who took part in this wonderful fundraiser. The money raised will help improve the lives of young people with brain related injuries and their families across the country.”

Claire Stoneman at Foot Anstey added: “It was great to see so many people from the business community come together, have fun, and raise a considerable amount for a charity that is providing much needed support for families. I’d like to thank all of the entrants, volunteers and Somerset Country Cricket Club for making the quiz a tremendous success.”

The event raised over £4,000 for Cerebra which will help Cerebra to make a huge difference to the lives of children and their families.

News – March 2015

A stack of newspapersNHS Specialised Services
New guidance has been published in England on developing a more collaborative approach to providing specialised services, across geographical and service boundaries. These include some services related to neurological conditions. The process is called “co-commissioning” or “collaborative commissioning”. More details: and (NHS England). The principles for investing in specialised services by the NHS are currently under consultation,

New welfare benefit rates from April 2015 to April 2016
The page also links to information about allowances, tax and National Insurance. At the time of writing these are “proposed” rates, and if there are any changes by April these should be updated on the Dept for Work and Pensions and HMRC websites that are also linked there. (Disability Rights UK)

Benefits in Scotland
Over the year, Scotland may see welfare benefit changes that diverge from the rest of the UK. (Scottish Office).

Take part in research: Life Study
“Life Study” is inviting participation by pregnant mothers and parents of babies up to the age of six months. The study will track the wellbeing of a very large number of parents and their babies from around the country as they grow up. (University College London).

Public Health Services
From 1 October 2015, it is planned that local authorities in England will take over (from the NHS) planning and paying for public health services for babies and children up to 5 years old. (Public Health England).

Epilepsy medication
Sodium valproate and related medicines for girls and women with epilepsy: new guidelines, (Medicines and Healthcare Products Regulatory Agency).

New NICE (National Institute for Health and Care Excellence) guidelines: 
NG7, maintaining a healthy weight; NG6, health risks associated with cold homes;
NG5, the safe and effective use of medicines;
CG28, depression in children and young people;
NG1, Gastro-Oesophagal Reflux Disease in children and young people.

Disability Scooters
Disability mobility scooter users aged 14 or over, in England or Scotland, can now carry with them a greater weight of up to 200Kg on their scooter.  This is designed to allow for carriage of medical equipment as well as other items.  More details: (Dept for Transport). Guidance has also been updated, for users of scooters and powered wheelchairs on the road, at:


2015 No. 574, The Motor Vehicles (Wearing of Seat Belts) (Amendment) (No. 2) Regulations 2015
From 1st April 2015, amends the list of seat belts / child restraint systems that may be used in motor vehicles, to correspond with an EC / UN Directive.

2015 No. 393, The Rail Vehicle Accessibility (Non-Interoperable Rail System) (London Underground Northern Line 95TS Vehicles) Exemption Order 2015
From 27th March 2015, some vehicles and stations on the Northern Line will not have to abide by disability provisions that will apply elsewhere.

2015 No. 130, The Health Services (Cross-Border Health Care) (Amendment) Regulations (Northern Ireland) 2015
From 27 March 2015, makes the Department of Health, Social Services and Public Safety  the contact point for information about prescriptions intended to be used elsewhere in the EU, and sets out what information must be included.

Care legislation

2015 No. 305, The Care and Support (Children’s Carers) Regulations 2015
Regulations in connection with section 62(1) of the Care Act 2014, applying to local authorities meeting carers’ support needs, in force immediately after that section of the Act.

2015 No. 548 (L. 6), Court of Protection (Amendment) Rules 2015
Changes to the procedures for making decisions relating to mental capacity.  Some rules begin on 6 April 2015, and others on 1 July 2015 (Applies to England and Wales).

2015 No. 527, The Young Carers (Needs Assessments) Regulations 2015
From 1 April 2015, sets out how local authorities in England must recognise and assess the needs of young carers in their areas.

2015 No. 643, The Care Act 2014 (Consequential Amendments) (Secondary Legislation) Order 2015
Separates the law for carers between England and Wales.  2015 No. 642, The Care and Support (Isles of Scilly) Order 2015 places the Isles of Scilly with England.

Education legislation

2015 No. 54 (W. 5), The Education (Student Support) (Wales) Regulations 2015
Details of government financial support available for students ordinarily resident in Wales taking various higher education courses starting on or after 1 September 2015.

2015 No. 359, The Special Educational Needs and Disability (Amendment) Regulations 2015 (from 23 March 2015) and 2015 No. 358, The Special Educational Needs and Disability (First-tier Tribunal Recommendation Power) (Pilot) Regulations 2015 (from 1 April 2015)
Various amendments to the administration of EHC Plans (in all areas of England) and to Tribunal regulations (in certain pilot areas).

2015 No. 505, The Children and Families Act 2014 (Transitional and Saving Provisions) (Amendment) Order 2015
From 1 April 2015, sets out how Education, Health and Care Plans must replace Statements of SEN for eligible young people with a home LEA in England who are in detention, upon their release.

Financial legislation

2015 No. 345, The Universal Credit (Surpluses and Self-employed Losses) (Digital Service) Amendment Regulations 2015. 
From 6 April 2016, changes to some of the ways in which Universal Credit is calculated.

2015 No. 338, The Child Support (Miscellaneous and Consequential Amendments) Regulations 2015
Amends ways in which under- or over- payments are corrected, and other matters.  Comes into force from 23 March 2015 onwards in conjunction with Section 1 of the Childcare Payments Act 2014.

2015 No. 522, The Childcare Payments Regulations 2015
From 1 June 2015, arrangements for the financial administration of childcare payments by and for families, including which types of childcare providers come under the scheme.

2015 No. 437, The Employment and Support Allowance (Repeat Assessments and Pending Appeal Awards) (Amendment) Regulations 2015
From 30 March 2015, sets out circumstances under which an ESA claimant can be treated as having limited capability for work until an assessment has been done, and related matters.

2015 No. 417, The National Health Service (Charges, Payments and Remission of Charges) (Uprating, Miscellaneous Amendments andTransitional Provision) Regulations 2015
From 1 April 2015, allows some people to be reimbursed for travel expenses to some types of NHS appointment without having to make a claim, and to be exempt from some dental and ophthalmic charges (applies to England).

2015 No. 537, The Childcare Payments Act 2014 (Amendment) Regulations 2015
From 1 June 2015, an increase in the maximum for disabled children (under the Childcare Payments Act 2014 (c. 28), involving a scheme for supporting childcare through “top-up payments” to parents and others in order to enable them to work).

2015 No. 578, The Employment Allowance (Care and Support Workers) Regulations 2015
From 6 April 2015, ensures that under the National Insurance Contributions Act 2014, families employing carers in respect of disability etc. will be able to pay £2,000 a year less for the workers’ NI (“employment allowance relief”).  More details:

2015 No. 669, The Tax Credits (Claims and Notifications) (Amendment) Regulations 2015
From 6 April 2015, alterations to the backdating provisions for claiming Tax Credits.

2015 No. 138, The Jobseeker’s Allowance (Extended Period of Sickness) (Amendment) Regulations (Northern Ireland) 2015
From 30 March 2015, allows continuity for certain JSA claimants in periods of sickness of more than 2 weeks but less than 13 weeks in a 12-month period.

Victoria Gets Around With her New Trolley

Victoria trolley mainThe Cerebra Innovation Centre (CIC) recently received a request from Ian and Liz Staples who wondered if the team could help them by creating a trolley that their daughter Victoria could use to transport her feeding pump.

Always eager to help, the team accepted the challenge and Victoria received her new equipment a couple of weeks ago.

Victoria is reliant on her feeding pump for an hour three times a day and this can be very restrictive, especially when she wants to play!

So far, the trolley has been a huge success and Dad Ian, who had previously made an attempt to create his own version recently contacted us to say: “The trolley you have made for Victoria is amazing it is what Liz asked of me to begin with, and it puts my efforts to shame that’s for sure! In fact I think Liz has already removed mine from the house. It’s the silly little things that can make such a difference in our daughter’s life and believe me this is one.  She is just so mobile with it, the trolley means that she is not stuck in a chair for over an hour 3 times a day, just so we can feed her. With all her other restrictions that have had to be placed on her, it’s just great to have her moving around the house just a little bit more. We can’t thank you enough.

The CIC team are always looking for new ways to make the lives of children with disabilities a little bit easier through their marvellous creations so if you have a problem, big or small that you think the team can help with, don’t hesitate to get in touch. You can contact them on 01792 483688 or

Below are some more pictures of Victoria and her new trolley:

Will and Trusts Event a Success

criminal-law-policyCerebra holds Parent and Carer Forums throughout the year and on 12th February, the first ever Family Forum for Preston was held at the town’s Space Centre.

The event was arranged by Maria Wilson, one of Cerebra’s Regional Officers and its aim was to inform parents on how to make a Will and set up a Discretionary Trust.

A brilliant presentation was provided by Hugh Jones, Solicitor who is a nationally recognised expert in Court of Protection Work. Hugh provided an extremely informative presentation on the importance of both making a Will and setting up a Discretionary Trust for children with additional needs.

Nineteen parent carers attended this special event and there was lots of questions put forward by parents and carers on their specific situation. Everyone who attended felt the presentation was worthwhile and that Hugh was great, explaining this very difficult subject in “layman’s language”.

After the presentation, attendees were introduced to Cerebra’s non means tested Wills and Trust Grant which is extremely straight forward to apply for and can provide parents or carers with a grant of £350 towards the cost of producing a Will.

The feedback from the event has been extremely positive so far and one parent wrote:

“Excellent topic and very much appreciated in setting people to makes plans and Wills. This is fantastically pro-active support for the young people you aim to help, so well done.”

Another said: “Like pensions and funeral plans, writing a Will was certainly bottom of my list of things to do! However, Hugh Jones Solicitor actual managed to turn a rather dry subject into something fairly simple, straightforward and relevant for me and my family. He explained the importance of putting these things into place now, not only for peace of mind but also to protect the financial future of my children. I left the forum, with knowledge; knowledge is power! I no longer felt lost and unsure of what to do next. I have applied to Cerebra for my funding voucher, which will cover the entire cost of my will or trust and I will be arranging an appointment with a solicitors next week. I would recommend that all parent carers go along to this forum if they get the chance.”

Hugh’s presentation from the event can be downloaded below.

Hugh Jones Presentation

Ben Loves His New Trike!

Ben on his trikeThe Cerebra Innovation Centre (CIC) Team were recently contacted by mum Helen to see if they could build a trike for her son Ben.

Ben has had trikes in the past but quickly outgrew them so he was in need of an upgrade! He also needed something with a bit more balance than other products readily available on the market. With these specifications in mind, the CIC team got to work on Ben’s very own black and white Cerebra trike.

After some tweaking, the finished product features a wide axle on the back and this helps Ben to balance while playing. The axle also unscrews so that mum Helen can easily transport it in the car.

“Thanks so much once again, we are really grateful for the time and effort you put in to making this for Ben – it is a fab scooter and we had lots of compliments on it at the park!“ Helen told us.

Ben is now looking forward to some warmer weather so that he can get out and about!

If you would like to enquire about Cerebra’s trikes or would like to set the team at the Innovation Centre a new challenge, you can contact them by email at or by phone on 01792 483688.