Useful Information from MFON

Airports and accessibility – Advice for parents/carers and young people with SEND

We know you don’t need to go abroad to have a wonderful holiday – the UK has so many beautiful staycations on offer. However, for those who are looking to go further afield over the holidays, MFON Columnist, Carly Jones MBE, shares insights into the work being done to help make airports more accessible and offers her advice for returning to the skies.

Hello everyone! How are you and how has 2023 been for you so far? I hope you are hanging in there despite the dip in temperatures of late – it does feel as if summer isn’t too long away in the calendar!

If your family, like mine, hasn’t yet ventured back to the airport for a foreign holiday since pre-pandemic times, then a family holiday may feel even more uncertain than it already did before (and let’s face it, travelling and SEN needs were a tad tricky to plan even before the pandemic, right?!).

In one of my roles, I am fortunate enough to sit on the Heathrow Accessibility Advisory Group (HAAG). We are a board of advisers, all of whom either have a disability, are a parent of a disabled child and/or have had decades of professional experience in aviation and accessibility. Before I joined the HAAG some five years ago, I had no idea such boards for UK airports existed. As a woman with a disability and a parent of young people with additional needs, it gave me great reassurance to know that they do exist. It was promising to learn that there are boards of professionals standing up and advising airlines and airports on accessibility as independent members and chairs.

Throughout the pandemic, aviation was impacted globally in a way not previously experienced. The recovery hasn’t been perfect but the intention to get things to a world-class standard for all passengers, especially passengers with accessibility requirements, is the top priority.

Air travel and SEND

I hope some of these suggestions can help you and your family for the holiday season ahead.

1. Pre-book assistance with your airline

When you book your flights, also look out for the airline’s assistance support. Sometimes it’s a box to tick and other times it’s an email address to contact. It’s really worth doing this because assistance in the air is the duty of the airline and assistance at the airport is the duty of that airport only. Sometimes airlines have the more ‘appropriate’, ‘comfortable’ language used to refer to our family’s disabilities. However, sometimes they don’t. I recently had the option of ‘visual impairment’, ‘physical impairment’ or ‘developmental disorder’ on a particular airline and this felt a bit, well, icky to say the least. So just a pre-warning that language may not always be appropriate for us, but it does give us the assistance we need onboard!

2. Ask for assistance at your airport

Even if you have pre-notified your family’s needs with the airline or have forgotten to do so at the time of booking, it is a great idea to visit your airport’s special assistance counter on arrival. Here you can find sunflower lanyards and ask for any support your family could benefit from, such as early boarding or an escort to the gate for departure.

3. (Sun) flower power!

The sunflower logo is a great discreet way to signal to airport and airline staff that you have a hidden disability. The sunflower logo is not only widely recognised in the UK, be that in airports, supermarkets or a hushed array of venues and events, but now almost globally too, which will really help on your flight home from international airports. You can wear a lanyard, ribbon, badge, face mask and even a wristband supplied by Sunflower at extremely affordable prices. Visit https://hiddendisabilitiesstore.com/shop/personal-items-gifts.html?p=2

4. Seek support for returning to the skies with flight anxiety

A few weeks ago, I supported a loved one to attend the British Airways ‘Flying with Confidence’ course, a full-day course designed by British Airways to help nervous flyers feel more confident to fly again – ending with a short flight! Although I was there in a supportive role, as opposed to taking the course myself, I was gobsmacked by the transition of the many attendants who arrived in an extremely anxious state but left elated that they had, for a short time, taken to the skies. I cannot praise British Airways enough. If this is something that would help you or a family member, visit https://www.britishairways.com/en-gb/information/travel-assistance/flying-with-confidence for more information.

Similarly, Virgin Airways has a package of support for anxious flyers called ‘Love Fly’, including a course and even a Facebook support community to connect with other travellers with the same worries and concerns. I think this is a beautiful idea because it shows you aren’t alone and there are many (many!) others in the same situation. Visit  https://flywith.virginatlantic.com/bb/en/wellbeing-and-health/flying-without-fear.html for more information.

Happy holidays and happy flying all!

Carly

The Transition Event – JarGONE: say goodbye to confusing jargon

With the help of this list, you’ll have the information you need to define some of the tricky words and phrases (also known as jargon) you may come across during your Transition.

A

Additional Learning Support: a service designed to support your Special Educational Needs and Disabilities (SEND) in further education.

Advocate: an independent person or organisation who can support you to express your views and make your own decisions.

Alternative providers: organisations that might support you but do not receive money from the Government to help them do this. This could be private care organisations.

Annual review: the review of an Education, Health and Care Plan (EHCP). This must be completed within 12 months of making the plan and then on an annual basis. An interim review will be held every six months for children in early years.

Appeal: the legal process of arguing against something or questioning a decision you don’t agree with.

Assessments: usually a conversation with someone but may be carried out independently online, you’ll talk about or note down the things you can and can’t do in everyday life. You’ll also look at the support available to help you do these things.

Autonomy: making decisions about things in your life independently.

B

Brokerage: a person or organisation that helps you to organise and arrange support.

C

CAMHS: Child and Adolescent Mental Health Service.

Case worker: a type of social worker who helps someone in particular, and gives them the information, advice and help that they need.

Care Quality Commission: a big team of people who check the health system

is working well. Its job is to make sure that all care is as good and safe as the

Government says it must be.

Case studies: a real-life example of someone’s experience of a service, designed to help you.

Challenging behaviour: when someone behaves in a way that means they

might hurt themselves or other people around them. This might be because they find

it difficult to say how they are feeling or what they need.

Children and Families Act: laws introduced by the Government in September 2014 which changed how disabled children, young people and families get the help they need.

Confidential: information that is kept privately and only known by certain people.

Co-production: at least two organisations coming together to complete a piece of work.

Curriculum: a list of topics within a subject that you will be taught in an education setting.

D

Direct payments: money paid to you directly by your local authority, allowing you to organise your care and support independently.

E

Education, Health and Care Assessment (EHC): an assessment of your education, health and care needs.

Education, Health and Care Plan (EHCP): a document that describes what support you should get in school based on your EHC assessment.

Emotional health: how you feel overall. It does not mean being happy all

the time, instead it means how well you can deal with and make sense of your

emotions.

F

Forum: a place where people can share their thoughts and ideas about

something. It could be a group of people having a meeting, or it could be just

online.

Further education: when you choose to stay in education after you’ve left school by going to college or university. You could also do an apprenticeship or supported internship.

H

Health and Wellbeing Boards: key people from the local health and care system working together to improve the health and wellbeing of their local population.

Healthwatch: an organisation that can support you to help public health organisations improve their services in your local area.

Higher education: when you choose to stay in education after you’ve left school, usually to go to university or college.

I

Impartial: factual information free from personal opinion that allows you to make your own decision about something.

Independent supporters: people that can support you and your family when it’s time to action your EHCP for the first time.

Indicative draft: the first version of a document that will be changed before it’s final, describing a draft structure and ideas.

Information advice and support services (IASS): an impartial and confidential service which gives free information, advice and support about matters relating to SEND.

Integrated care system: integrated care system (ICS) is a statutory partnership of organisations who plan, buy, and provide health and care services in their geographical area. The organisations involved include the NHS, local authorities, voluntary and charity groups, and independent care providers.

Integrated care board (ICB): a statutory NHS organisation responsible for developing a plan for meeting the health needs of the population, managing the NHS budget and arranging for the provision of health services in the ICS area. The establishment of ICBs resulted in clinical commissioning groups (CCGs) being closed down.

Integrated care partnership (ICP): a statutory committee jointly formed between the NHS integrated care board and all upper-tier local authorities that fall within the ICS area. The ICP will bring together a broad alliance of partners concerned with improving the care, health and wellbeing of the population, with membership determined locally. The ICP is responsible for producing an integrated care strategy on how to meet the health and wellbeing needs of the population in the ICS area.

J

Joined-up: at least two organisations coming together to plan services in your local area.

Joint Strategic Needs Assessment (JSNA): describes the current and future health, care and wellbeing needs of your local area, helping the local Health and Wellbeing Board.

K

Key worker: someone who works with you and your family to help you get the most out of your education and social care services.

L

Legal document: a document with information that has been written according to the law.

Local agency: local organisations working on behalf of the Government, including local councils but also local health services, charities and other service providers.

Local authority: the council operating in your local area on behalf of the Government.

Local offer: information describing the services and support available in your local area for disabled children, young people and families.

M

Mainstream: the activities, services and education settings that are available to all children and young people.

Mediation: the process of finding common ground when two people or groups disagree about something.

O

Outcomes: targets that you or others may set based on what you want to achieve in life.

P

Parent/carer forum: a place where your parents and/or carers can talk about issues relating your care and support with other local parents and carers.

Participation: taking part in something, such as an activity you like.

Person-centred planning: making sure the services you receive are benefitting your needs.

Personal assistant: someone who can support you at home or to go out in the community.

Personal budget: how much your local council will pay towards your social care and support.

Personal health budgets: money to support your health and wellbeing needs, planned and agreed between you (or someone who represents you), and your local doctors.

Provisions: something that is offered to you by an organisation as part of their service.

R

Reasonable adjustment: a change that must be made so that someone with a disability can take part in something.

S

SEND review: a consultation by the Government to seek views about the changes people want to make to the special educational needs and disabilities (SEND) and alternative provision (AP) system in England.

Special Educational Needs and Disabilities (SEND): something that can affect your ability to learn, your behaviour or your ability to socialise.

Specialist support: services for children and young people with SEND.

Statutory: required by law.

Statutory services: services required by law that the Government provide.

Supported internships: opportunities for people aged 16-24 with learning difficulties or learning disabilities, who want to get a job and need extra support.

T

Therapies: medical treatments designed to help you live with the symptoms of your condition.

Transition: what it’s called when you move from children’s to adult services.

Tribunal: you and the other people involved in a disagreement will talk in front of a group of experts who are not aware of the problem but will have the final say on what happens.

V

Voluntary organisations: a group of individuals who enter into an agreement, usually as volunteers, to form an organisation designed to help people or an issue.

W

Ward: a room in a hospital where people with the same heath issue are treated.

Wellbeing: your physical health, mental health and happiness with your life all

put together.

Direct Payments for young people transitioning to adulthood

In this video, Direct Payment Support Provider Penderels Trust, explain Direct Payments for young people who are transitioning to adulthood.

In it, they look at what a direct payment is, what it is like to have one, and why you may like to consider it as an option to help you live an independent life.

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With over 30 years’ experience in Independent Living, Penderels Trust are experts at making processes like Direct Payments and Personal Health Budgets easy. Find out more here.

Moving to Adult Services: What to expect

It is always good to think about what you want out of your adult life as early as possible. This is commonly called transition.

This downloadable guide from Together for Short Lives has been developed to help young people from the age of 14 years with life-threatening conditions to know more about what to expect when they move to adult services.

The first section talks about what you can expect at different stages of the transition process to adult services. The second section focuses on different aspects of your life that you may want to plan for as an adult.

CLICK HERE, or directly on the image above to download the guide.

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Together for Short Lives is a UK Charity that helps every child and family living with a life-limiting or life-threatening condition get the very best care and support they can. Visit their website here

Transition checklist

Getting the most out of your transition to adulthood                                       

We know that your transition to adulthood can feel scary, that’s why we want to support you however we can.

This checklist has been designed to help you think about what you want to get out of your transition – we’ll ask you to answer a few simple questions depending on your current transition phase, all you have to do is tick the boxes that best relate to your experiences. 

To get the most out of your transition, it’s helpful to answer the questions as honestly as you can. This can help to keep track of your wishes and figure out where you may need extra support in the future. You’ll finish by taking some time for reflection based on the answers you’ve chosen. If you have any concerns, talk to a parent/carer, teacher or support worker.

Your first task is to take a moment to pause and think about the question, what does a good transition look like for me? When you’re ready, use the space provided below to write your answers. There’s also space underneath each set of questions for your own personal notetaking.