In this section you will be able to find useful resources and links to other organisations who may be able to offer further support and guidance.
Helpful Hints and Tips
This information is part of a series that we will be producing to help individuals and families. Please let us know any topics which would be most helpful for you and your family and we will compile information onto our website and in each newsletter. You can do this by either emailing Catherine at firstname.lastname@example.org or calling 01803 368871. We are always pleased to hear from you.
The first one we have produced is:
THE CARE ACT 2014
What are you entitled to? To find out downloaded here
Implementing the Care Act – Click here to read about how you can request and evidence your requirement for a specialist deafblind assessment.
Care and Support for Deafblind Children and Adults – DoH Policy Guidance – Useful information issued by the Department of Health as it provides policy guidance in relation to the Care Act 2014. To read the document in full click here.
Please share these documents or print them out for any family members and/or professionals who are involved in supporting people who are affected by Alström Syndrome.
You are welcome to use this series of helpful hints in any training or presentations, all we ask is that you acknowledge ASUK as the source.
If you would like to share your own experience of the assessment process, please email us. It is helpful to share ideas, especially about how people have argued their case and obtained a good care package. We know it is easier in some areas of the country than others and we can all learn by sharing.
We hope you find these resources useful.
Please find below a collection of links to other resources on the internet. Please let us know if you have any suggestions.
The organisations below campaign on behalf of people who are affected by rare conditions, to improve services for all.
Genetic Alliance UK is the national charity of patient organisations supporting all those affected by genetic disorders.
Rare Disease UK
The National Alliance for people with rare diseases & all who support them.
The voice of rare disease patients in Europe.
Driving research and treatments for the rare disease community.
Help with special needs education, disability allowances and further information
Provides free resources on their website for families to download to help get the support they need for their children and young people who are affected by special educational needs and/or disability (SEND). They also provide an advice line which offers, legally based information on any educational issue that is the result of your child’s special educational needs or disability. This could include problems with schools, requesting statutory assessment, statements and Education, Health and Care Plans, annual reviews, disability discrimination and exclusion. You can book an appointment to speak to one of their advisors via their website or call 01799 582 030
New College Worcester
New College Worcester is a co-educational residential special college for blind and partially sighted pupils aged 11 – 19 who are able to access the full range of the National Curriculum and progress to study post 16.
The Council for Disabled Children are an umbrella body for the disabled children’s sector bringing together professionals, practitioners and policy-makers. Click here for the Preparing for Adulthood from the Earliest Years Review recently made available on their site. This review is designed to support and prepare children and young people with SEN and disabilities for the next stage of their learning and development and into adulthood.
The Royal National College for the Blind
Further Education College for those aged 16 plus with visual impairments, located in Hereford
Queen Alexandra College
A National College for Learners with Disabilities, located in Birmingham
Specialist day and residential centre for visual impairment, located in Exeter, South Devon
Scottish Sensory Centre
For everyone who is involved in the education of deaf children, deafblind children and visually impaired children and young people, the young people themselves and their families.
Contact a Family
Contact a Family provides support, advice and information for families with disabled children, no matter what their condition or disability.
Sense provide expert advice and information as well as specialist services to deafblind people, their families, carers and the professionals who work with them. We also support people who have sensory impairments with additional disabilities.
Sense have produced a booklet which contains useful information about supporting and preparing children who may need to go into Hospital. You can view this booklet here
Irwin Mitchell Solicitors and Sense
Irwin Mitchell Solicitors have teamed up with the deaf-blind charity Sense, to offer a range of services, fact sheets and template letters for families. These are in conjunction with part 3 of the Children and Families Act 2014 .
Visual impairment is typical in people who are affected by Alström syndrome.
Action for Blind People
Action for Blind People is an expert national charity that provides practical support to blind and partially sighted people through work, housing, leisure, benefits and support. Actionnaires Clubs provide sports activities for children. Action have some excellent hotels for blind and partially sighted people.
Deafblind UK offers comprehensive services to deafblind people, their support assistants and other professionals. These include training in communication and rehabilitation skills; a free 24 hour helpline; a regional network of staff and volunteers; a varied leisure programme and a range of publications in different reading formats.
National Blind Childrens Society
Large print book service, activities, holidays and support.
The UK’s leading charity offering information, support and advice to over two million people with sight problems.
The Guide Dogs for the Blind Association
Providing guide dogs and buddy dogs for the visually impaired.
The Pleasure of Reading
We have brought together some organisations who offer audio, Braille and tactile books so you can enjoy reading no matter what.
RNIB offer a wide range of services to enable all the enjoyment of reading in different formats:
Calibre Audio Library
A library of over 8,500 titles including over 1,400 titles suitable for children.
One-off adult joining fee of £35 then no further subscription and there are no fines for lost, late or damaged books. Books are sent by CD, memory stick or streaming. No postage costs required and there is an optional £75 joining fee which includes an MP3 player.
Young Calibre audio library is a national charity providing a subscription-free postal service of unabridged audio books for young people who are visually impaired who cannot read print. There is a one-off joining fee of £20 for under 16’s.
A UK charity providing a selection of high-quality fiction and non-fiction audiobooks to some 50,000 people across the UK who find it difficult or impossible to read. On 3 easily accessible formats: through the post on MP3 CD, or downloaded and streamed online. Members can choose from a range of options to find the service that best suits their needs. They support the National Curriculum from Key Stage 2 to A-Level.
There is a cost for this service, but some services are free so it is worth applying:
7,000 audio books downloaded to iPod, MP3 or PC (£20 per year) or sent via MP3 CDs (£35 per year).
Audible is an audio book service by Amazon. There are a huge range of books professionally narrated by actors. The app is free but membership to the service is charged at a monthly subscription (£7.99 as at November 2017). You can try a month’s free trial to see if you like it before you commit.
Subscription cost of £3.99 per month for audio books on e-reader, Kindle, phone, tablet, and computer.
Over 40,000 free books. They carry high quality items: their books were previously published on paper by bona fide publishers and digitised with the help of thousands of volunteers. Most of their books are out of copyright and hence were originally published before 1923 so mainly classics.
Kobo downloadable books
Commercial site – over 2.5 million books, magazines and newspapers which you can download. You can read the books on iPad or iPhone or iPod Touch using the Kobo book reader App for iPad, iPhone, and iPod Touch or you can read them on Macintosh or Windows using the Adobe Digital Edition.
Apple iTunes iBooks store
If you have an Apple iPad, iPhone or iPod Touch then you can use VoiceOver to read all the books in the Apple iTunes iBook store.
Amazon Kindle book store
On an Amazon Kindle you can use its text to speech facility to read many of the 1.5 million books in the Amazon Kindle book store through the Kindle reader App. The Kindle App for the Apple IOS devices (iPhone, iPad, and iPod Touch) is fully accessible using VoiceOver.
Free app turns an iPhone or iPad into a Kindle. Turn any eBook in to large print and or use eBooks which include narration.
British Wireless for the Blind Fund
Radio/players which can work with USB, CD etc are sometimes available for free loan. If you meet their criteria:
Access to free tactile books for you to borrow and enjoy. These are a fantastic resource for all.
Guide Dogs’ CustomEyes Books
Guide Dog’s CustomEyes service produces tailor-made large print books for children and young people with a visual impairment.
Many local libraries offer eAudiobooks free of charge. They are generally borrowed as an audio file which you listen to on a computer, laptop, MP3 player, a tablet or on a smartphone.
Alström Syndrome can cause hearing loss, and occasionally deafness.
Click on the link below for access to the NHS Hearing Loss Commissioning Framework document – a very useful source of information especially if you need to obtain a spare set of hearing aids and ear moulds.
Hearing dogs for the Deaf
Train dogs to alert deaf people to specific sounds, whether in the home, workplace or public buildings.
RNID supports deaf and hard of hearing people at home and at work, providing help, advice, equipment and even supported housing.
The world of benefits can seem a maze of information, complex form filling and how do you know what you are entitled to? There are many organisations who can help, offering advice, support and information. ASUK also has a team of Support Workers who offer personalised support to individuals and families affected by AS, so please get in touch.
The following organisations offer support, advice and useful information:
Auriga’s Welfare and Support Service
The Auriga service is available to patients affected by Inherited Metabolic Conditions to help and support financial wellbeing.
Our representative is based at the Queen Elizabeth Hospital in Birmingham and is called Stewart Hill. You can contact the service on 0800 111 4894
This service can be offered on a 1-1 service to patients and their families, the services include:
Provide resources on a range of topics including benefits, financial support and a useful benefits calculator to see how much you could be entitled to. They have also produced comprehensive resources about Personalised Independence Payment (PIP) including a PIP toolkit which includes a useful FAQ section. This useful information can be found here. The RNIB offer a helpline 0303 123 9999 and these resources can be requested in alternative formats including a CD.
Provide guidance on benefits and support which should be available for people who are deafblind.
Councils across England and Wales must follow guidance on how services should be provided for people who have dual sensory loss. This guidance was produced to ensure people who are deafblind receive the support and services they need by their local authority. Information about the deafblind guidance can be found here.
Contact a Family
Provide support and information for families, no matter what their condition or disability. This includes information about benefits, welfare rights, local services and support, activities and education. You can also call their freephone helpline for parents and families on 0808 808 3555.
Provides useful resources about children and young people up to the age of 25 who are affected by disabilities and special needs. They offer information resources from parents perspectives and useful SEND information to download.
Click here to read more about the changes to SEND provision for early years children and how this may affect you.
VICTA supports blind and partially sighted children, young people and their families. VICTA provides support to children and young adults ages 0 to 29 years old by providing equipment to aid their visual impairment. Please follow the link to the Victa website to view their grant criteria.
Guide Dogs for the Blind
Guide Dogs for the Blind also provide grants for Assistive Adaptive Technology and Sensory Toys and equipment.
Please feel free to contact the ASUK Family Support Team if you would like help in sourcing grant funding, benefits advice or completing the grant funding application forms.
Links to websites with information about Alström-related conditions. Most of these are not specifically for medical professionals.
Offering information and support for people affected by Cardiomyopathy.
Please note that people with Alström Syndrome are much more likely than average to recover from this condition.
A UK charity offering support and information for people affected by nystagmus (wobbly eyes).
Offering support and information to people affected by Diabetes including useful resources such as living a healthy lifestyle, recipes and research developments.
Preparing for Adulthood
Providing resources and information for young people who are affected by disabilities as they move into adulthood. They offer specific expertise and support with paid employment, good health, independent living options and friends, relationships and community inclusion.
The Counselling Directory enables you to find a suitable counsellor, and they are dedicated to making the process as simple as possible, providing individuals in need with all of the information they require to make the most well informed decisions.Counselling Directory aims to be the leading service for providing counselling advice and information – connecting those in distress with the largest support network in the UK. They understand how important it is to find the right counsellor, the one that is exactly suited to your individual situation, have a look on their website for further information of the counselling services available in your local area, as a general rule counsellors with more experience will be accredited with the BACP.
It can often be difficult to juggle family life alongside work. Please find below some useful resources and organisations who can help and support you to know what your rights are.
Supports working parents and carers and their employers find a better balance between responsibilities at home and work. They offer a legal help-line to give parents and carers advice on employment rights, benefits and entitlements.
They also offer resources for parents of children who are affected by disabilities including knowing your rights, choosing childcare, entitlements and information about the ‘Waving not Drowning Network’ project. This project provides a helpline, newsletter, e-bulletin and occasional events and publications for parents of disabled children and carers of adults who want to combine paid work with their caring responsibilities.
You can find out more about these resources here
Please find below resources and useful organisations who offer a range of activities. Please see the links below to find further information and please get in touch if you have any suggestions you would like to add:
British Blind Sport
The aim of this charity is to ensure people who are blind or visually impaired have opportunities to enjoy sport and recreational activities in the UK. They have recently launched ‘Find a Guide Database’ where anyone over the age of 18 can look for guide runners in their area. The guides are fully trained and DBS checked.
Provide support for children, young people and their families. They offer fun family activities throughout the year. You can view the 2017 list of activities here and the 2018 calendar of activities can be viewed here
The Outlook Trust
Provide adventure sports, activity week-end breaks and holidays for children who are blind or visually impaired.
RNIB offer a range of activities and family events to get involved in. Including Actionnaires Clubs for 4 – 16 year olds. The clubs are provided throughout the UK and offer a range of activities including music, drumming, ten pin bowling, art,dance. swimming, athletics, basketball, goalball, judo, skiing, climbing, pizza making and attraction visits.
They also have started a new project called ‘Vision England’ where they provide residential activity breaks for 14 – 17 year olds. Places are allocated on a first come, first served basis and applications for 2018 are open now – Please ensure that you apply by Monday 22 January 2018.
The Calvert Trust
Providing three activity centres two in the North and one in the South of England where anyone affected by a disability can explore a range of accessible adventure activities. ASUK have used the Calvert Trust centres a number of times and we have always been very impressed with the range of activities, accessible accommodation and welcoming staff, who believe it is what you can do that counts!
Climbing out is based in the Lake District and offer fully funded activity breaks
Over the Wall
Providing fully funded activity breaks for disabled children.
The Bendrigg Trust
Offering a residential activity centre for people, of any age or ability in Cumbria.
Offering 5 venues across the Midlands, offering accessible accommodation and activities for all abilities.
Aerobility enables disabled and profoundly ill adults and children to share the magic which flying light aircraft brings – rediscovering smiles with the awakening experience of flight.
Media Reviewed: March 2017
Next Review: March 2019