Podcast Episode: PASDA. Supporting families of adults with autism
What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.
MM - Michael McEwan
DN - Donna Nelson
CP - Cath Purdie
In Edinburgh and the Lothians there are over 7,000 families supporting adults with an autistic spectrum condition. Pasda is a charity that offers support to parents, partners and siblings of adults with ASC. Executive Manager, Donna Nelson, and Cath Purdie, a carer, join Michael McEwan in a Glasgow cafe to explain how Pasda works in partnership with a whole range of organisations to help improve the health and wellbeing of families affected by ASC.
MM Can you tell us a bit more about your organisation?
DN Yes, absolutely Michael - Pasda is a charity that offers support to families of adults, as you said, over 16's, on the autistic spectrum who live in Edinburgh and the Lothians, and Pasda is a carer-led organisation and we were established almost 20 years ago actually by a group of parents and carers whose relative had a diagnosis of Autistic Spectrum Conditions, referred to as ASC. And actually this group of parents still forms the core of our Management Committee which are our governing body at Pasda. But central to that is our carers, which are the centre of everything that we do. Pasda also provides practical and emotional support to parents of adults with Autism Spectrum Conditions, but also to spouses and partners too. And our programme supports carers to understand autism behaviours and to develop communication strategies, which in turn we would hope would improve their health and wellbeing and help them as well to obtain information about the local resources that they can access. We also support them in developing an Action Plan, which in turn we would hope that this will reduce social isolation and increase their social circles as well.
We know that there is a really strong unmet demand for our services, therefore Pasda has a close fit with regional and national priorities, and we help to deliver many government policy goals - and this includes, for example, the Scottish National Performance Framework, and moreover, the Scottish Strategy for Autism and the Edinburgh City Council Autism & Carer Strategy for Scotland. But I think it's important to give you an idea of the demand for our services, and the current estimated prevalence rate of ASC is 1% of the general population, which means there are over 7,000 families supporting adults with and ASC in Edinburgh and the Lothians. And in the 2 ½ years up to June 2013, 110 carers of adults with ASC contacted Pasda seeking emotional and/or practical support. And we have realised that we have become a vital hub for information and advice on supporting an adult family member with ASC, as well as a really strong peer support community. And I'd like to touch a little bit on the financial implications that we deal with, with Pasda. From the 2012 Welfare Reform Act, this undoubtedly had an impact on individuals with ASC and their families are benefits were cut, and eligibility criteria was made more restrictive. So at Pasda we really had to think about this and we already are witnessing the stresses and confusion that families are facing due to welfare reforms and financial hardship. So Pasda provides carers with the reassurance that they are entitled to help, and in addition we provide information on how to access support from social work, and in many cases we will assist in referral processes and equally the diagnostic pathway as well.
MM So is this open ... your service is open to people in Edinburgh and Lothian, but what about if people contact you from different areas of Scotland? Would you be able to point them in ...
DN Absolutely, Michael, yes. We would signpost as far as we could, but currently we are funded for Edinburgh and the Lothians. However, as part of our long term plan, our strategic business plan, 5-10 years, looking at developing up into the north of Scotland, and equally down into the Scottish Borders. I'll give you a wee example - our Project Manager a few months ago went up to Perth to one of our partner agencies, Autism Initiatives One-Stop-Shop, and they did a presentation of Pasda and what like our carer support groups offer. And pretty much they are about kind of 20-ish years ago from where we have started, and they were really impressed by what we are doing and would really like to develop us further. So we are looking to maybe do some joint work up in Perth and all over Scotland in the future, so ...
MM Oh that's good. So a lot of different organisations have like goals. You have got visions and aims for your organisation - tell us a bit about that please.
DN Yes, we are a very, very passionate charity who cares so much about our carers' health and wellbeing, and our vision overall is to empower and support families of adults on the autism spectrum in Edinburgh and the Lothians. And this, together with our aim, is to improve the health and wellbeing of our family carers on the autism spectrum - and this is done through kind of various means, such as we offer one-to-one support, peer support, we give information, do social activities, offer learning opportunities and volunteering opportunities. And our aim really is to raise awareness through this of the needs and aspirations of our families of adults on the autism spectrum. We do this with professional bodies and with the public, and this is in order to influence policy and change attitude, which is a real big one for us. We also do this by working in partnership with others to promote the sharing of practical knowledge and experience, in order to improve the quality and range of services that are available to adults on the autism spectrum and their family carers. And we do work in partnership to be a carer led, innovative, resourceful, and moreover inclusive and compassionate service.
MM You tell me as well that you have got partnerships with other organisations - can you tell us a bit about who is involved?
DN Yes, absolutely, bear with me with this one, Michael.
DN We have got quite a few bits - really important - they are all equally important to us, so it's very important that I mention them all. So we currently work in partnership with a number of organisations and we will continue to do so throughout our Pasda Interactive Project. And these partnerships include Autism Initiatives Scotland, who we have a great partnership with, VOCAL, who are Voice Of Carers Across the Lothians, COEL, who are Carers of East Lothian. We also work with Tailor Ed Foundation, Mental Health Foundation and statutory services, which Pasda has strong links within the NHS Lothian and Local Authority Commissioning Teams. I think it's important to note as well that we also have a really strong partnership with the City of Edinburgh Council and the Richmond Fellowship - and our partnership with these two organisations has been recently jointly delivering a course called 'Positive Pathways' in 2013 and 2014 - and this is a positive behaviour support training programme for all of our carers. And this is an incredibly successful partnership, and we have been recently acknowledges at the SSSC, Scottish Social Services Council Care Accolades up in Perth, where we were finalists for the category of 'Working Better, Working Together'. We also have a partnership with Scottish Autism and we are currently finalising a profile tool, and this is to help carers and their family members have an independent living skills profile tool - and this will assist them in having their needs heard in really complex situations in meetings. So it gives them a piece of confidence to take in with them that all their issues are in front of them in a profile tool. In addition to that, we have informal links with a large number of other statutory and voluntary sector professionals and organisations across all of Edinburgh and the Lothians, including Social Work teams, Child & Adult Mental Health teams, for example, CAMs, transition teams and other carer organisations through the Edinburgh Carers' Network - and this is a really good partnership that we are developing at the minute with the Edinburgh Carers' Council and the Lothian Autistic Society. We also work with organisations such as Kindred (... unclear) and Into Work as well. So we use these links to promote Pasda Interactive and identify carers who may wish to access our project, as well as we do do a lot of signposting, so we really work collectively and collaboratively with our partners together. We have also established ourselves in local authority strategic planning groups, including the Autism Planning meetings at City of Edinburgh Council, Learning Disability & Advocacy meetings, as well as national groups such as the Scottish Government's User & Carers' Group for Autism. And Pasda has also met with, and we have just recently attended training sessions with MECOPP and Saheliya, and this is to work in partnership with black and minority ethnic carers. But can I just say as well, Michael - I think it is really important to note who we are currently funded with - and at the minute we are funded by the Big Lottery, the Scottish Government Autism Development Fund, Creative Breaks, which does a lot of our social group activities for our carers, and RBS, the Royal Bank of Scotland.
MM So what are you hoping to achieve with Pasda in the future?
DN In the future we hope to develop our range of services and to geographically extend our services as well. So as I said earlier, certainly move into the north of Scotland and all over is our overall dream I think. But initially our kind of first ... our next steps is to maybe develop a more centralised location of a drop-in service, so that Pasda has a really easily accessible and central location - like maybe a shopfront or something, that is really in the heart of the city. So everybody around can get to us, and drop in, and be very informal - but get all the information and support that they need in a one place environment. So that's kind of the bigger vision is where we would like to go.
MM We'll come back to you in a minute, Donna. As well as being joined by Donna, the Chief Executive, we are joined by one of her carers, Cath. Hi Cath - so give us a wee insight into what it is like to be a carer?
CP Hi, hello Michael - yes, it can be quite tough at times. As well as being a carer, I am a single parent too, so you have all the usual things like cleaning and cooking. I have to be a secretary to my son, a nurse, financial advisor, secretary, counselling ... the list is endless, you could go on and on. At times of stress or worry, it's really good to have an organisation like Pasda in your corner. Because I give substantial care to my son, you know, I can't work - so financial worries can take their toll too. And Donna has already intimated that in what she said earlier about the welfare reforms. So the world of benefits and welfare is an absolute minefield, and that is something that Pasda have helped me with in the past as well. There are lots of things that you can say, but I am a very positive person and I like to be optimistic and my sense of humour keeps me going through all the bad times.
MM I think you have got to be positive ...
CP Yes, you definitely do.
MM ... and give your determination and all that carries you through, kind of thing.
CP Yes, it definitely does. But as I say, sometimes, having Pasda there, you are not on your own - and as I say, I did go through a spell when my son first got his diagnosis, a number of years ago, when I felt very isolated and very low, and I wouldn't have known what I would have done without Pasda in the background.
MM So I'm reading about your support groups, Michaela's support group. Tell us a bit more about that?
CP Right, at Pasda there are an absolute abundance of support groups - you know, it ranges from like Partners & Spouses Groups, we have Complex Needs Groups, we have support groups in East Lothian, West Lothian, Midlothian. There is Pasda Connect which briefly is a peer support group which I am part of as well - it's good to meet up with other carers and you can share stories. We have a choir, social group ... so we have got so many things that are on the go, and you have to help with all the expanding - I am sure there are other things that we could do in the future, you know, and that's why we are looking for more funding, to be able to obtain a drop-in centre, which is much more central and accessible for all our carers. So, you know, if there are any millionaires out there, you know who to call!
MM Yes, so if there are any carers listening to this, what kind of advice and tips would you give a single parent that is a carer that needs support and stuff like that?
CP Yes, well particularly learn about your person's condition - in my case I learned an awful lot about autism and that from going on various training seminars and events that Pasda ran, like 'Understanding Autism', and then I did a 'Positive Pathways' course which was co-funded by the Richmond Fellowship and Pasda. You know, and all this sort of stuff, it gives you an understanding of why your loved one exhibits certain challenging behaviours, and they can give you strategies to help. So that's really important to do that. I would also say "look after yourself", you know, don't feel guilty about having some time to yourself and giving yourself treats every so often and that. Recently, Pasda, with the Richmond Fellowship, put on a weekend retreat called 'Helping Me Care - Coping With Anxiety', which took place in Peebles, and that really brought it to light - it really taught me that it's important to look after yourself, because if you care for yourself, you are going to be in a better place to look after your loved one.
MM Yes, that's a good point actually. Donna, can I just come back to you about ... again it was a brilliant insight into your service and what you provide. If there is anybody listening to this from Edinburgh and Lothian and haven't heard of your service before, now is your time to advertise it. How can people email you, website, Facebook and all that kind of thing?
DN Yes, absolutely Michael - we do have all of those resources - we are on Facebook and we are on Twitter, and you can find us on www.pasda.org.uk. And absolutely, contact us with any question - and no question is a silly question. Or if you feel you are in crisis or no one to turn to - we have a lot of our carers that feel really lost and isolated because they can't work through their caring capacity, and they come to Pasda and the first time in ages, feel that they are being heard for their caring roles - especially when we are such a specialist service for supporting families of adults with autism.
MM Give me that website one more time please Donna?
MM Well it's been nice to meet you Donna and Cath, and good luck with your project in the future.
DN Thank you, it's been lovely to meet you too Michael.
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