Spotlight On: Down Syndrome Cheshire

Spotlight On: Down Syndrome Cheshire
May 8, 2024 The Moulding Foundation

“As a small charity, we do face challenges, but we’ve got a mighty team behind our mission.”

 

Over the past four years, we’ve worked with some incredible charities across the North of England and we want to celebrate them and the incredible work they do. We caught up with Katie Bridge from Down Syndrome Cheshire to learn more about the charity and find out how The Moulding Foundation has supported their mission.

 

This is a photo of some parents and their children on a day out with Down Syndrome Cheshire at Chester Zoo which was funded by The Moulding Foundation.

 

When was the charity founded and what inspired its creation? 

“Down Syndrome Cheshire began as a support group in 2007, set up by four Cheshire mums whose babies have Down Syndrome (DS) and who wanted to support each other and other local parents going through a similar experience of raising a child with DS. Today, we support over 350 children and adults with DS and their families. 

Beyond our direct beneficiaries, we reach over 3,500 individuals including education and health professionals, parents, grandparents, carers, and many other significant people who play a part in supporting people with DS.”

 

What are the main activities or programs your charity is involved in?   

“Our three core aims are to educate, communicate and support, and to fulfil our aims, we deliver a variety of activities, projects, and services for our community. 

Education Advocacy

Our team of Education Advocates (EAs) provide specialist support and early intervention tailored to the learning profile and social needs of individual children with DS, working closely with schools and parents/carers to set a rolling programme of tasks and targets.  

The EAs facilitate training about DS learning profile, behaviour and Makaton (communication tool) and teach cluster groups to create opportunities to share knowledge, experiences, successes, and resources, ensuring best practice and best outcomes for children with DS across Cheshire. 

Empowered Communications 

This project aims to address the communication needs of children with DS and their families through monthly Speech, Language and Communications sessions which are led by our speech and language therapist. Parents are given Makaton manuals and baby sign books to refer to. We also offer free speech therapy one-to-one sessions, training, workshops and drop-in sessions.  

Family Support 

We provide monthly family peer support activities which include educational days out to Chester Zoo and fun days out to Gulliver’s Theme Park, and we facilitate popular weekly friendship groups for football, dance, and forest skills. We know how important it is that young people with DS can get involved in age-appropriate activities, so we offer everything from play barns for toddlers to pizza plus nights out for teenagers. 

We also organise forest school holiday sessions, a summer holiday club, and a residential for our members. For some parents, this was the first time they had experienced appropriate provision for their child during the school summer break. 

Community Engagement 

We’re incredibly passionate about improving health services, so we work closely with members of the DS community to discuss the challenges they face when accessing health care and advocate for change. We help to address patient needs by providing NHS staff training in Makaton sign language and raising general awareness of DS. 

Another key area of focus for us is supporting new parents who have babies with DS, so we now provide maternity packs for midwives. This ensures that they can offer the best care and guidance to new parents, allowing them to bond with their beautiful new baby in an informed, appropriate, and caring way.   

Employability and Enterprise 

We have provided work experience placements to teenagers and young adults with DS at our office and we have an Employability Officer who works with the local community to provide training, work experience, and assisted work placements for adults with DS. In the past 6-months, we’ve supported 6 people with DS into employment. 

Awareness and Campaigns 

We’ve successfully campaigned for final year students with Down syndrome in Cheshire to be granted an additional term at college to benefit from the work experience and life-skills training they had missed during the pandemic, and every year in March we run an awareness campaign in our local community to coincide with World Down Syndrome Day. 

Finally, we’ve worked with the National Down Syndrome Policy Group to lobby for the passed Down Syndrome Bill, and we are instrumental in helping our members submit their feedback to help shape the new Down Syndrome Act.”

 

What are some of the biggest challenges your charity faces in achieving its mission? How does your charity overcome these challenges? 

“Everyone’s costs have gone up so the competition for funding is very high. We know that some external services are at breaking point, and this impacts the families that we support. Since the pandemic we’ve seen a 164% surge in demand for our services, which is huge. The cost-of-living crisis also hasn’t helped.  

To overcome these challenges, we’ve started to diversify our funding streams so that we’re not too reliant on one funding source. We’ve launched two new corporate and individual fundraising campaigns and we’re hoping that these will help us to become more sustainable in the future. We’re also trying to increase our links into the business community so that we can provide corporate volunteering opportunities for employees and employability opportunities for our members.  

As a small charity, we do face challenges, but we’ve got a mighty team behind our mission. Our core founders are still very involved, and we’re led by our community – our trustee board includes an individual with DS, parents, grandparents, and carers of children with DS.”

 

How did you find out about The Moulding Foundation? 

“We discovered The Moulding Foundation through LinkedIn. They’ve been very active in the local community since launching the foundation, and when we saw that they were helping to fund a new school for children with complex needs, we decided to apply for funding.”  

 

How has The Moulding Foundation supported your charity and who has benefited from our support? 

“We’re very grateful that The Moulding Foundation funded our family peer support event at Chester Zoo. Not only did this allow over 80 families to have a fun day out, but it also provided them with a supportive environment where they could connect with others who understand their unique challenges and experiences as a family. 

When it comes to organising day trips, it’s understandable that some families might feel anxious or apprehensive; they might be worried about how their child might react to a new environment, and the potential for meltdowns can add an extra layer of stress. However, having the support of families who have been through similar situations can make a world of difference as it creates a safe space, helping alleviate some concerns. It’s also a fantastic way for people to meet new friends and not feel isolated, which is very important for wellbeing in general.

We’ve had amazing feedback from families who have enjoyed a safe and supportive day out.”

 

This is an image of a child with Down Syndrome stood in front of an orangutang at Chester Zoo.

  

What’s next on the horizon for your charity? 

“We’ve got lots of ideas about how we plan to grow the charity, but our main priority is making sure that the charity is as sustainable as possible. 

We’d love to grow our network of local businesses, so we’ve just launched a new fundraising campaign called The Champions Club which is for businesses that want to give back to their local community, boost their CSR credentials, and support a local charity like ours. By joining the club, they’ll have access to promotional opportunities, volunteering opportunities, and business networking, and can enhance their social value by demonstrating their commitment to the local community. 

We also run employability projects to help people with DS get into work or training, and we’d love more businesses to get involved in that side of our charity. We’ll provide specialist support and training; we just need people to provide work experience placements or ‘world of work’ visits. Ultimately, we want to support people with DS into work and businesses need employees, so it’s a win-win! 

Volunteering is also something we’re keen to grow and we’re hoping to employ a dedicated Volunteer Coordinator to take our volunteering to the next level. We can offer things like employee volunteering days or employee-led charity fundraising opportunities, which can be great for improving staff engagement by building a strong connection to the local community. 

Finally, we’re developing a new project called the #ichooseboard. This is a group of people with DS who have helped shape the new Down Syndrome Act passed in Parliament recently, which will mean better life outcomes for people with DS. The project has been an incredible way to give people with DS a voice and to really influence change and make history.”

 

How can people get in touch with Down Syndrome Cheshire?

“We’ve got so many exciting things in the pipeline and we’re always looking for people to get involved. To learn more, please don’t hesitate to contact us by emailing [email protected] or calling 01606 330884.”

Click here to learn more about Down Syndrome Cheshire