Wouldn’t Change A Thing are proud to support the campaign by the National Down Syndrome Policy Group to introduce The Down Syndrome Bill. Together, we have the opportunity to effect real change for our community! Take a read about what they are trying to achieve and how you can help below.
The Down Syndrome Bill was introduced to Parliament earlier this year by Dr Liam Fox MP. The Bill is due to be voted on by MPs this month, on 26th November, and it needs to pass in order to reach the next stage before becoming law.
Despite the laws around equality of opportunity already being in place, people with Down syndrome and their families are still not being fully included and supported to live their best lives. The Down Syndrome Bill presents an opportunity for positive change, and the National Down Syndrome Policy Group is committed to this because such opportunities don’t present very often!
The Government have yet to announce if they will support the Bill so we need your help to persuade them to make the right decision. Only with their support is the Bill is likely to become law.
What is The Down Syndrome Bill?
The Down Syndrome Bill is a bill to make provision about meeting the needs of persons with Down syndrome; to place a duty on local authorities to assess the likely social care needs of persons with Down syndrome and plan provision accordingly; and for connected purposes. It would put a responsibility on authorities to take account of people with Down syndrome when they are making provisions for education, health and care services.
Why do we need The Down Syndrome Bill?
- Increased rates of stillbirth
- Lack of support during pregnancy and for new parents
Limited specialist training about Down syndrome available to professionals
- ‘Postcode lottery’ for therapies
- Only 5.6% of adults with a learning disability are in paid employment
Longer & more frequent hospital stays
- Life expectancy remains 28 years below general population
- Just £5 per person with Down syndrome is spent on research
Expectant and new parents need to be provided with accurate and balanced information, and be treated with unbiased care when baby may have/has Down syndrome by well-informed staff who are guided by well- developed equality policies. There needs to be greater awareness and accurate knowledge about life with Down syndrome in the wider population.
There is a limited expectation for people with Down syndrome to be in employment and as a result individuals are being denied the opportunity to earn a regular salary, have a sense of identity, be challenged, learn new skills, meet new people, understand the world better, enhance their sense of meaning and purpose and make a positive contribution to their communities; in short be a full participant in adult life.
Education professionals in all settings do not routinely receive the specialist training they need to give them a thorough understanding of the specific learning profile associated with Down syndrome and the best educational practice which would enable them to successfully include young people with Down syndrome and meet their global needs. Like all people, better education leads to better outcomes with people better prepared to enter the workplace.
Health and Research
People with Down syndrome are living longer than before now that they are brought up in families and are accessing medical procedures previously denied them. Yet they still receive poorer care than age matched individuals in the general population. Greater understanding and higher expectations underpinned by well-informed medical training for clinicians will ensure the optimum treatment of health issues of people with Down syndrome in the future.
People with Down syndrome face particular challenges in social care. Rather than supporting people to develop and use their many skills, emphasis is more on ‘day care’ provision. While for some this may be appropriate, for many it is inadequate. Among Covid patients with Down syndrome, the risk of dying from the infection was 36 times higher than the general population. This alarming fact is due to many factors including poor access to healthcare but also because many adults live in residential care. ‘While the focus was on older adults, whose mortality rates shocked the nation, a hidden calamity was also taking place among people with learning disabilities.’ (Courtney and Cooper, BMJ 15 July 20)
How Can You Help?
1. Write to your MP directly
Find your MP’s contact details here – https://members.parliament.uk/FindYourMP
Make your letter personal, about your family member, explain why The Down Syndrome Bill is important and how it will improve their life, ask them to confirm their support and to attend the event at Parliament in November. Remember to include your address or your letter will be dismissed.
2. Sign the National Down Syndrome Policy Group’s automated letter
This takes a minute to do and requires just your name, address and email
3. Sign this petition for The Down Syndrome Bill
This takes a minute to do, shows your support and enables us to keep you informed of developments
4. Change your social media frame to show your support
For more information, please take a look at the National Down Syndrome Policy Group website here