Pushing for Change: My Testimony to House of Lords Autism Act 2009 Select Committee

CaptainGingerBeard

Hello Scope community,

I'm writing to you today with an important update that I believe will resonate with many of you who advocate for and live with disabilities. As some of you may know, I received a formal diagnosis of autism in 2018. This diagnosis, while bringing clarity, also highlighted the significant systemic challenges many disabled people, including autistic individuals, face in the UK.

Recently, I had the incredible opportunity to submit testimony to the House of Lords Autism Act 2009 Select Committee as part of their call for evidence for a UK-wide inquiry. This was a crucial moment for me to share my views and concerns, particularly in light of some deeply distressing experiences with the Department for Work and Pensions (DWP). These experiences, alongside the profound challenges I've navigated in my day-to-day life and even the recent bereavement of my father over Christmas, have solidified my determination to influence policies for the good and ensure a more inclusive and equitable future for the next generation of disabled people across the UK.

While I understand that health is a devolved issue in Wales, debated under the remit of the Welsh Parliament, I firmly believe the House of Lords has a vital role in addressing issues that fall under the purview of the UK Parliament. My submission focused on how the Autism Act, the Government’s autism strategy, and the statutory guidance are functioning (or not functioning) effectively, drawing on my personal experiences to offer specific, practical recommendations.

I elaborated on my reasons for engaging with this inquiry, driven by a deep desire to prevent others from enduring similar difficulties to what I've faced, particularly with the DWP. The systemic issues I encountered underscored the urgent need for a more understanding, adaptable, and genuinely supportive system for disabled individuals. This isn't just about my experiences; it's about advocating for tangible change for every disabled person in the UK.

My testimony also touched upon the campaigns I've initiated from home, such as the Wales Autism Bill 2019. While this is a Welsh initiative, it speaks to the broader need for robust and effective legislative frameworks to support disabled people nationwide. I also felt it was important to convey the personal impact of my father's passing over Christmas and the ongoing challenges of daily life, as these are realities for many disabled individuals and often overlooked in policy discussions.

The Committee is seeking evidence on crucial questions, and I made sure to contribute to as many as possible, offering my insights on improving various aspects of support for disabled people, specifically through the lens of autism:

• How can public understanding and acceptance of disabled people, including autistic individuals, be improved?
• How can the Government improve assessment, diagnosis, and post-diagnostic support for neurodevelopmental conditions?
• How can the Government improve the identification and support of disabled people when they need it (including if they do not have a diagnosis)?
• How can access to healthcare be improved for all disabled people?
• How can community support be improved for disabled individuals?
• How can access to education be improved for disabled learners?
• How can support for disabled people to find and stay in work be improved?
• How can support for disabled people who are in contact with the criminal and youth justice systems be improved?

Now, I'd like to open this up to our wonderful Scope community. Has anyone else had success with contacting their local political representatives to advocate for disability rights and support? Have you been involved in any campaigning efforts, either locally or nationally, to influence policy for disabled people? And crucially, has anyone else provided insight or evidence to the House of Lords Autism Act 2009 Select Committee or other similar inquiries concerning disability? I'd love to hear your experiences, successes, and challenges, as your collective wisdom is invaluable.

Let's continue this vital conversation and work together to influence positive change for all disabled people in the UK.

Best wishes,

Captain GingerBeard

Holly_Scope

This is amazing @CaptainGingerBeard 🤗

MW123

@CaptainGingerBeard Firstly, I would like to say welcome to Scope.

Thank you for sharing your powerful story, it’s both moving and inspiring. Your efforts to bring personal experience into policy discussions, especially through the House of Lords Autism Act Committee, are so important. It’s encouraging to know that lived experience is being heard at that level, and your voice will help shape a more inclusive future.

I’m truly sorry to hear about the loss of your father and the tough experiences you’ve had with the DWP. The strength it takes to keep pushing for change while dealing with personal loss and difficult situations is remarkable. Your determination is admirable, and your story will really speak to a lot of people.