Tag Archives: Resources

Resources – February 2016

ResourcesA roundup of resources that might be useful for families of children with brain conditions.

A resource “bringing books, ideas and people together” on any subject. Searching for a topic brings up articles, book titles and ideas, and it is also possible to contribute to the website.

How to be a great autistic individual employer
A guide aimed at people with autism and their families who are looking to employ a Personal Assistant. One of a set of three guides relevant to autism, (Skills for Health).

Contact a Family Podcasts
Contact a Family have a series of podcasts, the latest one gives information about Carer’s Allowance.

Growing up, sex and relationships
Guide for parents of teenagers with disabilities, with an information leaflet for young people, (Contact a Family).

Curing the Winter Blues
Article about overcoming SAD (“the winter blues”) from Autism Society. Geared to adults with autism, but of interest to a wider audience.

The trials of toilet-training an older child with autism
A blog written by a parent of an autistic (Autism Awareness Centre).


Rare Disease Day
29 February 2015
On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities based on the slogan: Join us in making the voice of rare diseases heard.

Resources – November 2015

ResourcesOur monthly round-up of useful resources for parents of children and young people with neurological conditions.

Plain Facts
A magazine and tape for people with learning difficulties, describing research topics of interest, (Norah Fry Research Centre, Bristol).

“What good looks like in psychological services for children, young people and their families”
A new handbook published by the British Psychological Society as psychological services are under review, (links to a free download).

Grow Wild UK
Grants of £1,000 to £4,000 for community wild flower projects.  Closing date for Spring 2016 projects, 1 December 2015, (Lemos & Crane with Royal Botanic Gardens, Kew).

Book on Autism
A parent has recommended to us a new book on autism, “Neurotribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently”, by Steve Silberman. It won the 2015 Samuel Johnson prize for non-fiction and has attracted some high-profile reviews, for example The Guardian at: http://www.theguardian.com/books/2015/aug/23/neurotribes-legacy-autism-steve-silberman-book-review-saskia-baron. The reference given by our parent member was: http://bookshop.blackwell.co.uk/jsp/id/Neurotribes/9781760113636.

Top tips for getting around on public transport
A short video for young people with autism, (Ambitious About Autism, myVoice project).

Five tips that helped improve my child’s behaviour
From a mother of two boys with autism, (Autism Speaks).

Seasonal resources

Cold Weather Plan for 2015-16
This year, pregnant mothers are classed as one of the vulnerable groups.  The Plan follows NICE (National Institute of Health and Clinical Excellence) guidance and the strategy “Cutting the cost of keeping warm” by the Dept for Energy and Climate Change.  It includes a system of cold weather alerts for England.

Epilepsy and Flashing Lights
Short article about minimising any risk of a seizure triggered by festive flashing lights, electronic screens or fast-changing light and dark patterns, (Dr Fergus Rugg-Gunn, Epilepsy Society).

DIY Sensory Play
Five recipes for play materials to make at home for children with sensory difficulties (playdough, finger paints etc.), (Multi-Sensory World).  There are some small sensory presents for sale on the same website, and a blog with tips on dealing with sensory issues).

Sensory Toy Warehouse
More small sensory items.

8 presents for young children with cerebral palsy
A parent’s article about toys that her son enjoys, followed by a comments section where other parents share their successful ideas, (“Mrboosmum”).

Sensory toys
Autism West Midlands are selling a Christmas Sensebox and Glowbox.

Special needs and special occasions
Ideas for where family gatherings, etc. might be awkward. Other potentially stress-busting articles are referenced at the bottom of the webpage (Terri Mauro, About.com).

Resources – October 2015

ResourcesOur monthly roundup of useful resources for parents of children and young people with neurological conditions.

The Parent Zone
Information for parents about keeping children safe online, talking to children about mental health issues, the meaning of various teenage slang words, and other subjects, (The Parent Zone with the National Crime Agency).

Recently-founded company selling a range of educational / young play toys.

Same But Different
A Community Interest Company aiming to raise awareness of disability through arts.

A further insurance company that parents have found useful for covering travel with children who have pre-existing conditions.  Some others are already listed in our article on travel insurers covering children with disabilities.

Universal Credit and Other Benefits
Guide linking to information on extra support available to people who receive Universal Credit, including help with healthcare costs, free school meals, legal aid and court fees and disability and pregnancy grants and payments, (Dept for Work and Pensions).

Details of the changes to school- and college- age qualifications in England
These relate to a series of summary “postcards” that are being sent round schools (Ofqual).

Health and social care resources

Patient Engagement Hub
A showcase of resources explaining the range of services available from pharmacists / chemists’ shops, (Royal Pharmaceutical Society).

Video about Personal Health Budgets
A solicitor runs through the essentials in about 20 minutes, (Autism Connect).

Care Act 2014
An explanation of the Care Act 2014 which came into force in April this year, (Irwin Mitchell solicitors).

The routine immunisation schedule from Summer 2015,  and Vaccination of individuals with incomplete or uncertain immunisation status, from September 2015, (Public Health England).

NHS Rights in Health Care
A poster for under-18s about confidentiality, making their own decisions in healthcare and making complaints in their own right, (NHS England Youth Forum).

Making a complaint about health and social care services
Information to help you make a complaint in the UK and Channel Islands, (Headway).

Resources for specific conditions

New version of the Transition Toolkit for families of children with autism
Updated, plus new sections including independence skills, safety, digital literacy and other topics to help them move from adolescence to adulthood, (Autism Speaks).  Please note that while the general advice applies anywhere, the references to public service systems and legal matters only relate to the USA.

Cancer and school life
Resources to help teachers and others to support children with cancer, (CLIC Sargent). Also, check out our guide, Returning to School: A teachers guide for pupils with brain tumours, during and after treatment.

Acquired brain injury in children: a parents’ guide
Free 200-page practical guide covering all stages of a child’s journey through treatment, rehabilitation and transition to adulthood (Children’s Trust).

Dealing with a Brain Injury
Suggestions for understanding and dealing with a changed young person and changed family dynamics after an adolescent has had a brain injury, (Caron Gan, Bloorview Research Institute, Canada).

Concussion Consortium
A new website that includes advice about the type of traumatic brain injury that can occur in sports activities, (Kern County, USA).

Everyday triumphs: small steps to a healthier heart for mental health service users [aged 14 and over]
This resource is based on statistics indicating that people with severe mental health conditions are at a higher risk of developing heart disease (British Heart Foundation).

Epilepsy films and booklets
A collection designed for people with epilepsy and learning disabilities, (Nottinghamshire Healthcare).


First annual Challenge Poverty lecture
Glasgow, 22 October 2015
A lecture given by Naomi Eisenstadt, the Scottish Government’s new Independent Advisor on Poverty and Inequality, about what can be done in Scotland.  Free but must be booked in advance, (Poverty Alliance and Centre for Contemporary Arts).

Resources – September 2015

ResourcesAutism Connect
Internet blog for anyone involved with autism to share thoughts and information. Also links to a free e-learning course. An iOS App version with many of the features (not the course) can be downloaded from iTunes by searching on “Autism Connect”. (Autism West Midlands).

University and epilepsy
A series of articles about preparing to go to university for young people with epilepsy, (Epilepsy Society).

Kern County Concussion Consortium
Practical information about concussion, mild brain injury and aftercare, with links to further resources.

Personal Emergency Response Service
Carers UK have a special offer on the wearable “Buddi” personal emergency service (for the cared-for person).

Improving school readiness: creating a better start for London
A document that would also show parents what is considered to make a child “school ready”.

Special Educational Needs
A collection of FAQs and short legal items about special educational needs, (Douglas Silas solicitors).

Universal Credit and Families: questions and answers
Government guide clarifying various questions asked by families that might be entitled to Universal Credit, (Dept for Work and Pensions).

Template letters
A new Template Review Letter and guidance notes, for parents wishing to ask the DWP to review a decision to stop DLA payments for a period when a child has been in hospital. These are Word documents, accessed by going to the Contact a Family website, www.cafamily.org.uk and entering the words ‘template review letter’ into the search box.

Catalogue of health-related fuel poverty schemes
Document listing local schemes to assist households that want energy efficiency measures (e.g. warm home schemes, Care & Repair). Many of these schemes include households with a disabled member, (Dept of Energy and Climate Change).

What to do before, during and after a flood
Includes information about dealing with insurance companies, and further contacts for emergencies (Environment Agency).

Moving into work
Employment and childcare rights for families in England, Northern Ireland, Scotland and Wales. Booklet from Contact a Family.

Care to Learn
Care to Learn is a UK programme of support including childcare costs for parents under the age of 20, to enable them to study, (Student Bursary Support Service).

Pregnancy and Mental Health
A set of resources about mothers’ mental wellbeing in pregnancy, (Tommy’s: your online midwife).

Resources – August 2015

ResourcesOur monthly roundup of useful articles and resources for families who have children with additional needs.

Autism and vacationing – ten tips for predictability
Tips from the mother of two children with autism, about planning for easier travel and holidays. (Autism Awareness Centre).

Science podcasts
Short podcasts from the journal “Nature”, summarising developments and issues of interest in science, including brain sciences.

Check if you can get Legal Aid
An online tool for people engaged in matters that might need to lead to attendance at a court or a tribunal. A checker is also accessible from the Civil Legal Advice (CLA) Gateway, https://www.gov.uk/civil-legal-advice. There is a Civil Legal Aid Eligibility Calculator for use by advisors to see whether their clients can access it, http://civil-eligibility-calculator.justice.gov.uk/ (Ministry of Justice).

Helping you access free childcare for your 2, 3 and 4 year old [in England]
A guide that particularly applies to children with disabilities,  (Irwin Mitchell solicitors with a group of charities).

Simple Stuff Works
Company offering training, advice and aids for positioning and postural care, for children whose condition potentially affects their body shape.

Communication Courses
One-day courses on Intensive Interaction, a communication approach for those who live or work with people who have learning difficulties that make engagement, understanding and expression exceptionally difficult, (Intensive Interaction Institute).

Human Rights Toolkit
A practical resource for using human rights to make a difference in your community. Designed to help elderly people but also applicable to others, (Age UK).

Teaching and play in the early years: a balancing act
A report and a set of four videos produced by Ofsted to emphasise that learning and play are not separate from one another.

Activities for Children with Additional Needs
Collected information on specialist providers of activities for children with additional needs, (National Deaf Children’s Society).

Disability coaching
An interesting set of resources collected for sports coaches who may be working with disabled people. There is also a section of resources on coaching children, (Sports Coach UK resource bank).

Summer Budget: what does it mean for families of disabled children?
A breakdown of the effects on family finances, mostly but not only from April 2017 onwards, (Contact a Family).

SEND Pathfinder Programme
A report on the Pathfinder SEND programme in England, where families in selected local areas tried out the new service programme for children with additional needs. The report includes many of the insights they had about the process, (Dept for Education).

Resources – July 2015

ResourcesOur monthly roundup of helpful resources.

Online discussion group for parents, carers and people with disabilities.

Lists sources of information, help and activities for disabled children and their families.

Let’s stop bullying for all
A Youtube video featuring advice given by young people with disabilities, (Anti-bullying Alliance).

The Early Start Denver Model
A description of an approach to infants showing signs of autism, (Autism Speaks).

Positive Behaviour Support
An introduction to the Positive Behaviour Support (PBS) method, (British Institute of Learning Disabilities, BILD).

New factsheets for parents in England
Help in the early years if your child has additional needs; and Personal budgets, (Contact a Family).

Disabled Children and the Equality Act 2010, by Philippa Stobbs
What Early Years providers need to know and do, including responsibilities to disabled children under the Children and Families Act 2014. (Council for Disabled Children).

Resources – June 2015

ResourcesOur monthly roundup of useful resources.

Muir Maxwell Trust
Practical support for families of children with severe epilepsy.

Epilepsy Sucks UK
A parent-led organisation that gives anti-suffocation pillows to suitable children with epilepsy.

Free Epilepsy Smartphone App
The Epilepsy Society offer a free app for Android and iPhone, with a seizure diary and first aid information.  They have also updated their “Just diagnosed” pack, which can be ordered free from their website. This contains a seizure diary, first aid cards, a helpline card, a “What would help me?” postcard, and an ID card and wallet.

Fledglings Second-Hand Service
For families to buy and sell larger pieces of second-hand special needs children’s equipment,

Youth Services
Interactive map to find your local youth services, including counselling, advice and information, (Youth Access).

Heatwave plan for England
Updated advice on keeping children and other groups safe during hot weather, (Public Health England).  High risk factors such as certain disabilities, inability to adapt, environmental factors  and medications that increase sensitivity to ultraviolet are described more fully in a related document, “Making the case”.

Prescriptions and Holidays
Information about getting an extra supply of a prescription medicine to cover a holiday, (NHS Choices).

Communication Development
Early years resources to support children’s communication development, (Communication Trust).

Well at school
Advice and information for teachers of children with various conditions in order to help them manage these at school (Chelsea Community Hospital School). Also of interest to parents.

Free online courses from universities and cultural institutions.

Mental Health Behaviour Guidance
Government guidance relating to school pupils:  how to differentiate between issues of bad behaviour and issues of mental health, (Dept for Education).

“Find your perfect tutor”
A searchable database of tutors in various different subjects. (Teachigo, privately-run database).

“How do I explain autism to a sibling?”
Article covering ways of making autism understandable to other children of different ages and developmental stages, (Autism Awareness Centre Inc.)

Building resilience in children
A series of short videos and information explaining the interaction between genetics, care, environment and brain development, (Harvard University, Center on the Developing Child).

“Information sharing matters”
Interactive video-based e-learning about effectively sharing information between families and a range of professionals including paediatricians, health visitors, GPs, therapists, child minders and pre-school and nursery teachers. (Royal College of Paediatrics and Child Health).

“Disability matters”
Free e-learning designed to challenge and positively change attitudes amongst the UK workforce / volunteers towards disabled children and young adults. There are 57 learning sessions and resources to go with them, (Royal College of Paediatrics and Child Health).

Accessible Meetings
Short guide to making meetings accessible to people with learning difficulties / disabilities, (SCIE, Cecilia Mercier).

Great Adaptations
An expert’s view of modifications that could be made to a house to ensure full access and independent living for a person with serious injuries, (Irwin Mitchell).

Step-by-step guides to living with disabilities
Free e-book series, (Henshaws Society). Sample title: “Supporting your child to maintain skills for independent living”.

Respite for Carers
Information about carers’ breaks and respite care, (NHS Choices).

Carer’s Allowance
New factsheet on Carer’s Allowance, (Contact a Family).

Personal Budgets
New factsheet on Personal Budgets in England, (Contact a Family).

Mental Health Act (1983) Code of Practice factsheets
Designed particularly for those in hospital under the Act, and their carers, (NHS Choices).

Free online course about applying the new SEND legislation in England
Designed for educationalists but also informative for parents, (OnLine Training Ltd.)

Education Rights Series, principally applying to England
Four factsheets on young people over 16 with SEND; school transport; transfer reviews (to move from a Statement of SEN to an EHC Plan); and Education, Health and Care needs assessments, (Down’s Syndrome Association).

The Care Act: transition from childhood to adulthood
Resources, including policy documents and ways of supporting young people, (Social Care Institute for Excellence, SCIE).

Resources – May 2015

ResourcesOur monthly roundup of useful resources for families of children with additional needs.

Holiday Grants
List of some of the sources of holiday grants for children with disabilities.

The Prince’s Foundation for Children and the Arts
Listing of shows for children. These include “Relaxed performances” geared to children with special needs. Others may be found by putting the term “relaxed performance” into a search engine.

Getting Diagnosed
A factsheet about the steps to take if you believe a child would benefit from having a diagnosis for their condition (in this case, Tourette syndrome), (Tourettes Action).

NICE evidence search
To find national guidelines, standards and other information on health and social care topics.

Includes guidance on aspects of supporting literacy and well-being at home, transition and other topics, (JJ Charitable Trust and others).

Premier Reading Stars
“Premier Reading Stars” is a collection of literacy resources based on Premier League football. (National Literacy Trust).

“What you need to know”
A webinar about the new SEN framework in England, (Douglas Silas solicitors).

Parent carer forum handbook
A how-to guide for people setting up a forum, (Contact a Family).

Disability Matters
Free e-learning materials designed for the UK workforce, to inform fears, ideas and attitudes towards disability and disabled children and young people, (by a consortium led by the Royal College of Paediatrics and Child Health).

What human rights do for disability
A number of examples from case law, where cases brought by or for people with disabilities have been upheld,  (RightsInfo).

Getting it right for every child
Getting it right for every child (GIRFEC) is a new approach to services for children in Scotland aged 0 to 18 years.  (Scottish Government).

Help and support for disabled young people to find and stay in work
New guide from the Dept for Work and Pensions.

PIP postcode map
Updated map showing postcode areas for PIP assessment providers and reassessment of existing DLA claimants (aged 16+. Dept for Work and Pensions).

Resources – April 2015

ResourcesOver the Wall
Charity providing free camps for children with life-limiting illnesses and their families.

Time Specialist Support Ltd
Autism befriending and support agency covering the North West of England.

Breaks for carers
Information on carers’ breaks and respite care, (NHS Choices).

Some useful links for arranging holidays: 

Kids Sleep Dr
Free app for parents to record children’s sleep patterns and read tips relating to the patterns,  (Evelina Childrens Hospital).

Company supplying scents / aromas with potential uses for additional needs.

Pupil premium: schools with good disadvantaged pupil results
Lists of schools in England that have achieved notably good results in basic subjects with disadvantaged pupils, and those where such pupils made notably good progress between Key Stage 2 and Key Stage 4 (Dept for Education).

Maternity and Paternity Leave
Calculator for parents’ leave and pay from 5 April, (only applies to England, Scotland and Wales).

Preparedness Tips for the Sick or Disabled
Article by Vince Tuscano about being ready for emergencies, (Survival Life).

Managing medical devices, April 2015
Guidance on the acquisition, maintenance, re-use and disposal of equipment used in disability or sickness.  It also includes advice on accessories such as batteries and chargers.  The guidance is designed for organisations providing equipment to members of the public, but would also be of interest to families maintaining equipment themselves, (Medicines and Healthcare Products Regulatory Agency, MHRA).

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: http://www.immediate.co.uk/news/brand/children-almost-five-times-more-likely-to-be-bullied-in-school-than-online-finds-immediate-youth-childrens-study/ (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: http://www.anti-bullyingalliance.org.uk/onlinetraining.

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).