Information & Advice


Information & Advice

ASUK want to help you find the right support for you and your family as we know that it can be difficult if you are affected by a sight and/or hearing impairment, or have other complex needs.  We’ve collated as much information as we can (& update regularly), mainly from online resources that we think you will find useful, we’ve grouped these into 8 topics to make it easy for you to quickly find the resources you need. Please see below.

If you have any further questions please contact catherine.lewis@alstrom.org.uk / 07970 071 675

 

1.1 Educational Health Care Plans (EHCP)

Health Policy Paper

The following paper describes the development of the POWER-tool (Patient participation in Outcome measure Weighing for Rare diseases), and first experiences of the tool in an ongoing trial involving patient representatives in choosing relevant outcome measures during disease clinical trial design. https://www.sciencedirect.com/science/article/pii/S0168851018305001?via%3Dihub

Deafblind UK

Deafblind UK support people with combined sight and hearing loss to live the lives they want. From support following a diagnosis, assistance to help you do activities through to information, advice and guidance. Their page about getting a specialist deafblind assessment is particularly useful:

https://www.deafblind.org.uk/information-advice/getting-assessed/

The Good Grief Trust

The Good Grief Trust exists to help all those suffering grief in the UK. They aim to find the bereaved, acknowledge their grief and provide reassurance and a hand of friendship and ongoing support. Their vision is to bring all bereavement services together around the country, to ensure that everyone receives the support they need.

Links to websites with information relating to Alström health conditions. Most of these are not specifically for medical professionals.

Visualise

Visualise work with organisations to increase awareness of the accessibility challenges faced by employees and/or customers with disabilities. Founder, Daniel Williams, who has an eye condition called Retinitis Pigmentosa which causes gradual sight loss, established the business in 2014 in order to share his knowledge, skills, experience and expertise in this field. Click HERE for the Visualise resource pack designed to help people facing sight loss – it provides lots of useful information about support services and suppliers of assistive technology and equipment.

Cardiomyopathy UK
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.

Nystagmus Network

A UK charity offering support and information for people affected by nystagmus (wobbly eyes).

Diabetes UK
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.

Counselling Directory
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.

Social Care Institute for Excellence (SCIE)

SCIE are an improvement support agency and an independent charity who work with organisations that support adults, families and children across the UK.

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.

Local Government and Social Care Ombudsman Service 
This is a free service, which is often the final stage for complaints about councils, all adult social care providers (including care homes and home care agencies) and some other organisations providing local public services.
‘We investigate complaints in a fair and independent way – we do not take sides.’ (quote from the IGO website)

Blue Badge; Disabled Parking Permits
The charity, Contact for families with disabled children offer comprehensive information about the blue badge scheme and how to apply. This is usually done through your local authority.
New rules will come into force from the 30th August 2019 which will take into account hidden disabilities as well as many people now being able to automatically qualify if they meet specific rules. You can read the full information here
The Government have also announced a new online system which means applicants can complete the whole process online, hopefully making it easier and quicker to apply. You can find further information and apply online here

Working Families
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

Renaissance Legal

Renaissance Legal specialise in working with families and carers of disabled and vulnerable individuals, helping them plan effectively for the future.

Office for Disability Issues (ODI)

Part of the Government Department for Work & Pensions. The ODI supports the development of policies to remove inequality between disabled and non-disabled people. Read the latest policy paper on disabled people’s rights following the UK’s first periodic review here: Disabled people’s rights: info following the UK’s 1st periodic review

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.

Victa
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
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.

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
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.

ACUK Centres
Offering 5 venues across the Midlands, offering accessible accommodation and activities for all abilities.

Aerobility
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: June 2019
Next Review: June 2021