The Down’s Syndrome Association has some useful resources and tools that can help you support decision-making and financial independence for the people you support and family members.

Making financial decisions for people who lack capacity

DSA resource on bank accounts and managing money

Decision making and Lasting Power of Attorney (LPA)

Making decisions post-16

Mental capacity FAQs

Easyhealth have lots of useful easy read health resources including Cancer, Diabetes, Epilepsy, Dental problems.  

You need to register to access resources – it’s free to join.

Easyhealth work with colleagues with a lived experience of learning disability &/ or neurodiversity to create the easy read translations.

https://www.easyhealth.org.uk/pages/common-health-conditions

Sadly grief and loss are part of life and people deal with grief in different ways. People with learning disabilities may have some additional challenges related to the meaning of death for them and their lives, how they made sense of it including if they participated in the funeral etc but many challenges are brought about by communication difficulties and how they express themselves or expressing grieving feelings through behaviour.

Here are some useful resources: a carers guide which can also help staff navigating some of the process with the people they support and a factsheet from BiLD which looks at some of the ways a parent or carer can help a person with a learning disability to understand and cope with loss, bereavement and death.

In addition, there are also local bereavement services such as: Bereavement support — Winchester Hospice; Winchester Bereavement Support which can support someone going through bereavement.

Supporting people with a learning_guide for carers

Lets talk about death

Bereavement_British Institute of LD

Understanding Death – EasyReadOnline.

Connect to Support has lots of useful resources.  Including information for unpaid carers that we think would be useful for parents/families and supporting friends.

https://triggertool.connecttosupporthampshire.org.uk/resourcespage

https://www.connecttosupporthampshire.org.uk/

 You can find local groups, activities and services within your community as well as  care providers and other paid services that may help you.

How to be heard and communicate more effectively. 

As a carer you have a right to:

1. carer’s assessment

2. ask for a care needs assessment for the person(s) you look after

3. ask for flexible working

4. have your views and feelings taken into consideration
by social services and healthcare professionals.

Download the cuk-self-advocacy-guide-2020-england-web

5  Tips for keeping well if you help or support someone else from Hampshire Carers Partnership

Are you looking after or supporting a relative, friend or neighbour?

1. Identify yourself as a carer

We are all likely to be a carer at some point in our lives by providing more care or support than ‘usual’. This is likely to have an impact on our own health and wellbeing and may limit the amount of free time we have to ourselves. Are  you looking after someone who may struggle without your support?

2. Look after your own health and wellbeing
Caring for yourself is as important as caring for others. If you don’t look after yourself and have a regular break then you may not be able to maintain the
support you are providing for others. This means looking after your physical
and mental health, e.g. making sure you get enough sleep.

3. Connect with others / talk to someone
Keep in touch with friends and family. Talking to others can make a real
difference – a problem shared is a problem halved! Tell someone when you’re
struggling and don’t be afraid to ask for help?

4. Be informed and know your rights
As a carer you have rights and are entitled to help and support. Get in contact
with the organisations who can help you and signpost you to the information,
help and support you need.

5. Where to go for further information and support

A number of organisations provide information, advice and support to carers
including:

 Connect to Support Hampshire
www.connecttosupporthampshire.org.uk/carers

 HCC Adults’ Health and Care – helping you to assess your needs
www.needschecker.hants.gov.uk/

 Andover Mind, Carer Support and Dementia Advice Service for Hampshire.
01264 332297 (select option 3). Monday to Friday: 9am-5pm
enquiries@andovermind.org.uk also https://www.andovermind.org.uk/

 Carers Together – 01794 519495. Monday to Friday: 9.30am-3.30pm
(answer machine outside these hours). admin@carerstogether.org.uk

 The Princess Royal Trust for Carers – 01264 835246. Monday to
Thursday: 9am – 5pm / Friday: 9am – 4.30pm

info@carercentre.com

 Hampshire Young Carers Alliance – website pointing to each of the locally
based young carers projects https://hyca.org.uk/

 Healthwatch – https://www.healthwatchhampshire.co.uk/carers-zone

Here are some health resources given out at our Parents and Carers evening in March 2022

Health Resources for Parents and Carers

There is lots of useful information here in this information guide from Southampton, Hampshire, Isle of Wight and Portsmouth (SHIP).  Aimed at anyone providing direct support to people with learning disability and/or autism 

STOP. LOOK. CARE

This booklet is designed to support carers and care workers (hereafter referred to as carers) who live and
work in the Southampton, Hampshire, Isle of Wight and Portsmouth (SHIP) area. Carers should recognise
changes in a person’s condition by monitoring them and/or recognising any deterioration in their wellbeing.
The aims of the SHIP STOP LOOK CARE booklet are to:
• provide a guide for people with a learning disability and/or autism who are supported in the SHIP area
• improve quality of care, maintaining and improving health and wellbeing
• be a Care Certificate companion.
This booklet promotes basic awareness and knowledge of certain needs and conditions and advises where to
refer to, if needed. It highlights:
• why different aspects of observation and care are important
• what to look for
• what action to take

STOPLOOKCARE_130520_SHIP clean copy_electronic

The lanyard is a discreet sign for staff that additional support or help may be required by the wearer.

The hidden disabilities lanyard is also called the “sunflower lanyard” because of its appearance – a strip of green with a pattern of yellow sunflowers.

https://hiddendisabilitiesstore.com/shop.html

The Trustees and staff at Winchester Go LD are fully committed and signed up in support of the Five Principles Nothing About Us Without Us.

https://www.nationalvoices.org.uk/publications/our-publications/nothing-about-us-without-us

National Voices, the leading coalition of health and care charities in England, have heard from hundreds of charities and people living with underlying conditions, and developed these five principles to underpin and test any policy change. They put people and their rights at the centre of decision-making.

1. Actively engage with those most impacted by the change
People have a right to be consulted about changes that profoundly affect their lives. People most affected by service cuts, lockdown, self-isolation, and difficulties with accessing food and medicine, need to be heard and their experiences and concerns acted on. Policymakers must base their decisions on a deep understanding of how people and patients are affected.
Proper coproduction must be the cornerstone of policy design and development as we are making decisions for the longer term.

2. Make everyone matter, leave no-one behind 

Everyone matters – all lives, all people, in all circumstances. Whether your life is normally unaffected by health issues or you struggle every day with your ill health or disability – your
life matters equally and needs to be weighed up the same in any Government policy. It is essential that decision makers signal that they want people living with ill health or disability
to lead full lives and remain an active part of society. Even if some people need to live with more severe restrictions, we must take steps to ensure they are able to work, earn money,
access clinical care and socialise. We must move through this crisis together, and leave no one behind.

3. Confront inequality head-on

We’re all in the same storm, but we’re not all in the same boat. Mortality and morbidity are higher for those living in poverty and working on the frontline. People from Black, Asian or
minority ethnic backgrounds are disproportionately affected. Life in lockdown is harder for those living in overcrowded or insecure housing than it is for those in spacious homes with
outside space. There has never been a more urgent moment to confront the social determinants of ill-health as we build back better. All policies to manage the next phase must recognise these stark inequalities, taking a proportionate universalist approach.

4. Recognise people, not categories, by strengthening personalised care

We need a personalised approach to how people want to live. Vulnerability should not mean blanket bans. Having a learning disability does not in itself mean people will have a
short life expectancy or poor quality of life, people in care homes are not simply waiting to die. Not everyone over 70 privileges safety over family contact. The category of ‘vulnerable’ needs to be rethought and broadened beyond narrow clinical criteria to include more holistic circumstances that can make people vulnerable, such as domestic violence, poverty, disability or overcrowding. Personalised care is essential to safety and dignity.

5. Value health, care and support equally

People living with ill health or disability need more than medicine. They need care and support, connection and friendship. Social care, charities and communities are part of this vital, life enhancing fabric of life. The siloing, underfunding and neglect of social care, its workforce, users and purpose as a life enhancing public service has to end. Charities and communities need to be enabled to take part in the design and delivery of future care models. Any policy efforts to rebuild services need to actively address and dismantle barriers between sectors that only ever mattered to funders and regulators. The future will be different. Let’s make sure it will also be more compassionate and equal,
with people’s rights at its centre. The many people who died, who lost loved ones or whose lives have been made immeasurably more difficult deserve nothing less.

Notes
National Voices is the leading coalition of health and social care charities in England.  We work together to strengthen the voice of patients, service users, carers, their families and
the voluntary organisations that work for them. We have more than 160 members covering a diverse range of health conditions and communities, connecting us with the experiences of millions of people.

For further information:
Rebecca Steinfeld, Head of Policy
rebecca.steinfeld@nationalvoices.org.uk