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3 LD Week Quotes 2023

Lead to Change: Caught in the riptide

There is an assumption that health and social care support is inherently good or, at worst, benign. Such a scarce commodity, individuals and families complete an often herculean assault course of bureaucracy to access; eligibility criteria, assessments, paperwork, the waiting…it must be worth it.

There is however a different story of health and social care, one that occasionally hits the headlines like a freak wave, breaking through and into our consciousness. It is a tale of individuals and families who have been caught up in the riptide that exists in the system. It happens something like this.

You are a (usually but not exclusively) young autistic person; you may also have a learning disability. A change takes place in your life; it may be puberty, or a significant life changing event like a bereavement, or something as simple as a period of ill health for someone who loves you and upon whom you rely. For whatever reason, you enter the water that is health and social care, it looks calm and should provide some buoyancy support while the ground around you shifts. If you can cope, then when you, and those who are important to you, have re-established balance, you emerge from the water.

For others, they get caught in a riptide. The support offered becomes the risk, and the harder you fight the further into the service system you get drawn. Your every attempt at saving yourself from an environment that is harming you, becomes the very rationale for your continued detention. And, as the system draws you deeper, more ‘secure’ in its grip, you are pulled further away from those who know you. Those who hold a different idea of the life you did, could and should lead. A different picture to those who deal with your distress daily and can see no other way of defining you, than at your worst.

To achieve a bronze medallion lifesaving award, you learn that the last thing you should do is go into the water with a drowning person; the mantra is reach, throw, row, wade, tow. Always keep yourself safe. But families do not have that option. They are often the buoyancy aid that is keeping their loved one’s head above the water; but they get pulled under too.

Where is the equivalent of the lifeboat service? Where is the response that recognises the system is the issue? The rip tide is a symptom of a dysfunctional system that pulls individuals and families out to sea and funnels money out of the sector like flotsam.

Disabled people and their families can and will lead the change, but they need allies to launch the boats and provide safe harbour. They cannot do it alone.

‘I was much further out than you thought.
And not waving but drowning’

Stevie Smith
Listen to ‘Lead to Change: Caught in the riptide’ by Sam Smith (Read by Sam Smith)

Blog by Sam Smith (C-Change CEO)


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