Agnes’s Story: My life as a carer

AgnesMy name is Agnes and I am a wife, a daughter, a mother, a sister, a granny and (although I didn’t realise it at first) I am also a carer.

I am employed as an Inclusive Living Advisor with Take Ctrl (South Lanarkshire). I enjoy working as it is rewarding and it gives me time to get out of the house and feel I am helping others through sharing my personal experiences.

So now to tell you a little about our family and how caring has impacted on our lives.

They say 3 is the magic number and it certainly was in our family as we had 3 children attending 3 separate schools, 3 sets of uniforms, 3 different transport arrangements, 3 sets of parents nights and more! Growing up for our children was not easy and we have had many challenges throughout this time.

Our middle child Gary is now 23 years of age and he took his first seizure at the age of 5. He has drug resistant epilepsy, learning disability and ADHD and was diagnosed with autism just last year.
As the years have passed his condition has progressed and following a short stay last year in Quarriers he has now been diagnosed with having frequent, complex, partial seizures.

He has seizures on a daily basis and often requires rescue medication. This has been a barrier to us accessing regular respite services as rescue medication was not licenced for use in children.

When Gary was younger getting a break was unimaginable. In fact, getting to the shops for groceries or having a bath in peace was virtually a non-occurrence. Most of my time was spent either on the phone or writing letters – I’m sure many of you know how difficult it is to access support from the statutory agencies!

We struggled to get a break together and often it would end up that I was left in the house looking after Gary while my husband took our other son out for the day. We got to the stage where we did not make plans as we couldn’t keep them. Friends would come to our house yet we would never be asked to theirs. I was feeling very isolated and frustrated as other people seemed to be getting their lives back. They were able to do things and go places as their children grew up and were old enough to be independent.

We are now in receipt of Self Directed Support and I manage Gary’s direct payment to ensure he has the care he requires. We have created employment for Gary through this and he has carers who are employed to help Gary with his business. Gary looks after chickens and is selling free range eggs to family, friends and local organisations with the help of a start-up grant from The Princess Scottish Youth Business Trust.

I cannot imagine there are many 23 year olds running their own business and he has fantastic support from his Personal Assistants past and present to do so. This has helped build Gary’s confidence and he is so enthusiastic about his chickens. He is happy and so we are happy! I don’t think any parents would want anything different for their children whether they had additional needs or not.

Through my experiences of managing Gary’s Self Directed Support I have become more interested in the whole idea of personalisation and how it all works. I have recently gained employed as an Inclusive Living Advisor and hopefully because of my personal experience will be able to help others go through the process to enable them to have as fulfilling a life as possible.

You can watch a video about Gary on the SCLD Website…

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Tackling hate crime: a long game not an overnight sensation

Our training manager, Susan Forrest, blogs about the Scottish Government’s new hate crime statistics and what we should do next…

Hate Crime

Last Friday the Scottish Government released Hate Crime in Scotland 2013/14. I attended the ministerial roundtable meeting hosted in Glasgow by Equalities Secretary Shona Robison and Community Safety Minister Roseanna Cunningham.

The Ministers underlined the Scottish Government’s commitment to tackling all forms of prejudice. They welcomed the work which various agencies have done to build people’s confidence to report crimes.

The key statistic for SCLD was the increase of 12% on the previous year for disability aggravated hate crime. Anything which promotes a greater understanding of hate crime is welcome. And it is possible that this increase can be attributed to victims knowing better how to report them. But there is a big difference between knowing where to report a crime and feeling safe in the community.

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‘The keys to life': One year on

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Today for Learning Disability Week we are focusing on the national learning disability strategy – ‘The keys to life’ which is just about to celebrate it’s first anniversary on 13th June.  Many of us were there at Murrayfield last June on what was a glorious day for the Scottish weather but more importantly a day of excitement for people with learning disabilities, their families and everyone who works alongside them.  Following on from ‘The same as you?’ there was understandably much anticipation about what the new strategy would say.

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BEMAS transitions project

Jo Kirby from The Action Group writes today’s blog on opening up services to young people with learning disabilities from BME communities…
It is Friday afternoon and Ben (not his real name) is busy volunteering as a receptionist, franking mail, answering calls and welcoming visitors. He has identified reception work as a career he is keen to pursue in and is delighted to be getting relevant experience to complement his college education. Ben is looking forward to Saturday night when he will be meeting up with friends at a disco in Edinburgh.

Ben is from an ethnic minority community; he has a learning difficulty and is registered blind. Three years ago his outlook was quite different. Ben was leaving the security of residential school and going through the transition to college. He didn’t have the support he needed to attend college taster days and so came very close to dropping out of college as a result. He was isolated from his local community, wasn’t in receipt of the correct benefits and had no formal support package.

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National gathering of Local Area Co-ordinators

LAC imageWe asked Vicky Nicolson, a Local Area Co-ordinator in Edinburgh, to share her thoughts on the recent National Gathering of LACs…

Local Area Co-ordinators gathered from far and wide for the National Gathering in Edinburgh on the 26th March 2014. I was delighted and excited to connect with colleagues (and friends) who work within the framework the Scottish Consortium for Learning Disability (SCLD) produced in 2010.

The important word here is connect – at the National Gathering Local Area Co-ordinators had a chance to connect with each other.
We have the opportunity to hear from policy makers and researchers about how what we do connects our work with legislation and strategies, how our fellow Local Area Co-ordinators connect with the communities, the families and the individuals they work with and, most importantly, to reflect on our own connections.

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Mother’s Day

Equal_Say_LogoTo celebrate Mother’s Day this Sunday, we asked Amanda Muir, Development Manager at Equal Say Advocacy, to blog about her experience of working with parents with learning disabilities…

This morning, I was listening to a caller on the radio complaining about the commercialisation of Mother’s Day. Personally, I always look forward to Mother’s Day, not because I expect to receive an expensive gift and a shop bought card but because I love the look of pride on my daughter’s face as she presents me with a hand-made card. This year I’m anticipating a luke warm cup of tea brought to me in bed as well, no doubt accompanied by a lengthy explanation of how she made it all by herself. For me, Mother’s Day is a marker in the year when I can look back and marvel at how my baby girl has changed into a beautiful 10 year-old, so full of vitality and enthusiasm for the world around her. I’m also looking forward to afternoon tea with my own mum and some time to reflect on the value of the bonds we share.

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Down’s Syndrome in the political spotlight

Chris Creegan, SCLD Chief Executive blogs on UN World Down’s Syndrome Day about the first ever debate on Down’s Syndrome in the Scottish Parliament…

UN World Down’s Syndrome Day LogoWe are coming to the end of Down’s Syndrome Awareness Week and today is UN World Down’s Syndrome Day. Down’s Syndrome is the most frequently recognised cause of learning disability and it’s been a busy week for our partners, Down’s Syndrome Scotland.Image

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Review of the Mental Capacity Act 2005 (England and Wales)

Chloe Trew from SCLD’s policy team blogs on how the review of the Mental Capacity Act 2005 (England and Wales), published today, has important messages and lessons for Scotland. Chloë is not a lawyer and would welcome comments and clarifications on this analysis.  Some of the language and concepts in this blogpost are hard to understand.  However, the ideas are so important that we felt we needed to blog on them.  We have included a news story on our website which explains what the review is about in more accessible language.

House of LordsYesterday the House of Lords Select Committee on the Mental Capacity Act 2005 published the findings of its review of how this piece of law was working in practice. You  can read the full report here and the easy read here. Although we have a different suite of legislative provisions around mental health, capacity and adult protection here in Scotland, we should have regard for the Select Committee’s findings, since they go to the heart of important issues in the support and human rights protection of people with learning disabilities.

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International Women’s Day

Saturday the 8th of March is International Women’s Day. In celebration of this, Angela Henderson from our policy and performance team blogs about women and learning disability… 

IWD logoThis year’s theme for International Women’s Day is ‘Inspiring change’. It recognises that there has been positive change towards equality for women but that there is still some way to go. It is a call for women’s advancement ‘everywhere in every way’.

What better day than this to reflect on the lives of women who remain the most excluded and marginalised within our society? Women with learning disabilities are mothers, friends, carers, lovers, wives, daughters, workers and citizens. But how far are these diverse roles and contributions recognised in the media, in policy and politics or in campaigns for social change?

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The books that made me

WBD2014_teal_leftMarch 6th is World Book Day! Jan Murdoch from our Communications Team celebrates it by talking about some brilliant books.

I LOVE books and have done since I was a wee girl. Reading is one of my very favourite things to do, so whenever World Book Day comes round it gets me thinking about books that have made me think about things differently or stayed with me long after I’ve read the final page.

Sometimes this is because it was a cracking story, when you can’t wait to turn the next page and you wonder what you will do with your time when it’s finished. And sometimes it’s because the book has changed the way you look at things or opened your eyes to something you hadn’t thought about before. And sometimes you get books that manage to be both.

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