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Trying to arrange care as a young person with complex needs + hEDS

By Grace Thompson, 19 near Brighton in Sussex

It is normal to want independence from your parents as you grow up, and it is not always easy. When you are a young person with complex needs, finding, and maintaining independence becomes a struggle. I want to talk about the difficulties a young person with complex needs faces when trying to arrange care, an important step in becoming independent from your parents. I have hypermobile Ehlers-Danlos Syndrome (hEDS), a connective tissue disorder and I have complex care needs.

I have multiple diagnoses across my physical and mental health. Some of my hEDS symptoms include neuropathic pain, asthma, unstable bladder, gastroparesis and intestinal dysmotility, as well as other physical conditions being under investigation. I am also autistic, I have sensory processing disorder, synaesthesia, dyslexia, dyspraxia, and anxiety, in addition to other conditions under investigation. All these conditions interplay in such a way that I am in need of assistance at all times.

I was an adult by the time I was diagnosed with hEDS, but my hypermobility was diagnosed before I was ten. My care needs had been increasing, and we were already working on getting more support to enable me to live without my parents. We have redone a bungalow to make it accessible, and the final piece is getting the right amount, and type, of care.

My current day-to-day support is not meeting my needs, and is only just giving me and my parents some time apart. We are looking into getting live-in support, and one agency has already said my needs are too complex for them to be able to take me on. Being told I am too complex is discouraging, I am already struggling to get the care I need, and now the potential providers aren’t even willing to provide it!

I keep pushing through. There are more providers out there. I have people fighting in my corner, and my parents support me in wanting my independence, whilst also showing that they are willing to support me as much as they can until we get to that point.

Finding the right agencies, the right people, the right tools, and the right support for me is a challenge. But I am hopeful that we will manage to find a solution that will give me independence. Having found peers through the SEDSconnective who have faced some of the same challenges makes the task feel less daunting. I also hope to be able to help those who come after me by sharing my experience with them.

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