Social Care

My disability has been with me since my birth. There’s a lot of things I can’t do for myself. However I have always ensured that it never defined me. After all, my identity is about far more than just some things I can’t do physically. I generally like to ensure my physical needs are supported, and just crack on with living and having fun.

As this article on the Scope blog outlines, the government are discussing the future of social care in Parliament this week. The reason it is on their agenda is simple. With 10 million people registered with a disability and an ever ageing population; most of our country are affected in one way or another.

For my Social Care needs I have a budget to employ a team of people to assist with my physical needs, day and night. They have to turn me overnight, dress me, hoist me (as I can’t walk), shower me, cook for me, assist with cleaning, shopping and anything else required. Without them I couldn’t get out of bed or leave the house, let alone do the more exhilarating actions I enjoy.

This year I have continued with my world travels, running my business and continuing my media work. Oh the glamour! But very few people know that moving my Social Care budget to a new Local Authority was the biggest achievement anyone could do! It was also stressful and exhausting.

The reasons for my move were that quite simply London had served its purpose with my career progression, experiencing amazing culture and meeting interesting people. Moving meant i could see my family more, have a calmer life, quicker transport times, cheaper rent and a continuation of the cool things I love.

I’d learnt some big lessons 6 years ago when I moved to London. As a bright eyed university graduate I was overly positive about my limitations. This meant that the original budget agreed couldn’t afford someone supporting me 24/7, when I truly needed that level of budget. Later I managed to argue an appropriate increase. Also the London Borough couldn’t assess me until I moved there, but I couldn’t move there without a care budget in the first place. I had 3 months without budget for my PAs! This all coincided with starting a new job. Luckily I used funds from my prior Local Authority, and repaid them after receiving the backdated funds from the new Local Authority (LA).

This year I didn’t have the surplus, but I did have cynical maturity on my side. These lessons from 6 years ago framed my approach to the move.

Firstly I needed an accessible house. This could provide me with 10 articles alone. Eventually I found a private rented, ground floor flat, that just passed on accessibility for my needs.

I then approached the new LA. They needed a referral letter from the existing LA. As the referral, new assessment, decision and implementation would take time I subletted my original flat for a couple of months. I also put it on the market for sale. Then when my new Social Care budget was approved (thankfully at the same rate, and not cut like many other people have had) I initiated the sale of my London pad.

The one big hiccup was the flat sale took longer than hoped for. Having stopped subletting for the exchange and completion; I ended up paying for 2 properties over 2 months. The small profit I had made on the flat simply put me back to square one. As a disabled person it seems savings are always taken away from you.

At the end of October my flat was sold. The existing LA agreed to pay 6 further transition weeks. The new LA started my Direct Payments a week ago. So 6 months after I initiated my wish to move, with a new address arranged, it was completed.

Compared to other people, this is a success story. However I am so tired. Plus it’s still not over as an OT assessment states the new flat is not accessible for safe showering and I may need adaptions or to move again. For now at least I’ve moved and have the new care budget in place.

Beyond explaining how hard this has all been, my general message and hopes are as follows:

– disabled people please notice that everything is still possible! Never stop living, but keep demanding improvements

– everyday people, please understand how complex this system is. Simply urge the government to fund our populations rightful needs and ensure that the processes are efficient & effective

– government ministers, please place more importance on this matter. My 3 questions are this;

1) Is a debate so close to Christmas appropriate?

2) Will you adequately fund people just like me to live independently, and in turn give so much more back?

3) Can you make this system, one that effects millions of people, a more user friendly one?

I’m off to recover a little more in time for Christmas and New Year. Here’s to hoping 2014 will be a lot calmer…

Martyn Sibley


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