What we pay, how we provide, social media and proving our worth!

There has been some debate in the media and in the voluntary sector press about how much CEO’s of voluntary organisations and charities are paid. Huge 6 figure sums have been mentioned. Ratio’s between highest paid and lowest paid scrutinised and talk of replacing paid staff with volunteers. I have a personal view about highly paid CEO's and not just because I am not one of them as I believe I am paid adequately for the job I do and that 6 figure sums are unnessessary for anyone, let alone those in the voluntary sector.

However, I think that the discussion should be at the other end. RfA provides front line, autism specialist services and I have been very proud that we have had no need to mention the London living wage, also much in the news, as we have always paid our lowest paid staff more than this for the amazing work they do. We have nearly 300 staff, most very part time and I am under pressure to cut the wages of our hourly paid staff to the minimum wage. Local authorities who buy our services say that we pay our frontline staff too much. The minimum wage used to be something people were slightly ashamed to be paying. Minimum is not the same as average and yet now it seems to be the bench mark for wages in the care sector.

If we believe that our service users deserve to get the very best in care then we must be prepared to pay for that and to pay the cost of good training to support our staff and to offer promotion prospects to help encourage the best staff to stay with us. We must also be prepared to get rid of staff who do not come up to the mark, good conditions of employment come with responsibility and expectations. Our values should permeate everything we do including how we treat our staff.

The best care is not cheap care and talking of money, we have managed to remain pretty unscathed by the huge cuts that many other organisations have experienced but that is not likely to continue. The 6% cut in our Birmingham income, for example, has been managed without any reduction in service but the talk of a 25% cut in the coming year will not leave services undented unless we really up our game in new and innovative fundraising. Personalisation has hit us hard with many families unable to meet the full cost of services from the money they are given. It will fall to ‘unrestricted’ funding to help us keep things going and even better help us to continue to grow and manage our waiting lists.. We are hoping to access more corporate support, more individual donors and more externally organised fundraising events. We have little capacity to organise in house events, which are costly and often do not bring in the money to cover those costs but events organised by individuals to benefit us such as marathon running, coffee mornings, cake and skills sales can be supported and are hugely welcome. It is a competitive world out there and everyone is feeling the pinch (well almost everyone!) so we have to be more imaginative, more fun and more willing to just go ahead and ask.

We are clarifying our priorities and making sure that we can measure our impact so we can prove that as an organisation we are both helpful and necessary. That may seem obvious but the onus is on us to prove our worth and goes hand in hand with the competitive nature of fundraising. It is also useful for us internally to continue to monitor how effective we are. Our goal is to improve the quality of life for individuals, families and carers and the services we provide along the way to that goal have to be shown to genuinely help lead to an improvement in quality of life. To say that a 2 hour group once a week leads to an improvement is not enough as that is full of assumptions. We have to be able to show what the effect of not having that group would be and why life is better with it. This may be obvious to us but not necessarily to those requesting evidence of impact before agreeing to fund us or when considering extending funding.

Communicating what we do is a tool in showing impact and RfA are now using social media more including Facebook and Twitter and we are just developing our YouTube presence. All this is a challenge to an old lady like me but I am enjoying it and very much appreciate the help provided by Kavita from Pimp My Cause and Gideon one of our Autism to Autism volunteers in dragging me into the 21^st century. Please do engage with our public face and help spread the word about what we are up to.

So, my tasks for this autumn are to maintain and improve all our services, defend our employment practices and prove to the outside world that we really are the very best provider and what we do makes a real difference to people’s lives. Your help in all this is greatly appreciated! Please do let me know your thoughts, reactions and ideas.

Autism and the question of gender, or can our girls have a good time too please!

Early this week I was a guest at a meeting of parents of girls with a diagnosis of autism. As the mum of a wonderful 24 year old daughter who has Global Developmental Delay I felt very much part of the event. Most of the families represented had girls in mainstream who would generally be described as Aspergers or 'high functioning' . What struck me was the predominance of mums over dads, with some brave exceptions. This got me thinking about gender in relation to autism and what we know or think we know.

When I started at Resources I was categorically told Autism is a 'male disorder'; it is 'at least 90% male'; that 'although there are some girls these are probably misdiagnosed'.....I took all those statements with a pinch of salt. It has always been clear to me that girls with a condition that manifests itself in 'different' behaviours are often viewed differently to boys. It is more acceptable for girls to be withdrawn and quiet, to be happy in a 'world of their own', to cry easily and become anxious. To diagnose girls seemed trickier. As the years have gone by the figures and the interest have changed. Slowly the statistics are becoming less stark. 90% has moved to 75% or even 60% depending on which bit of research you read but it is still the case that most of our girls find themselves in groups which are predominated by boys. That is particularly true for those girls attending special schools where a class may well consist of 8 or 9 boys and 1 girl.

Does this matter? Where we are trying to help our young people develop friendships then it probably does. Interests are different however hard we try to stop thinking in a gender stereotypical way. That does not mean they can't and shouldn't cross over but in reality they often don't. Being with someone who is 'like you' is reassuring and can help build confidence. At Resources we had a wonderful girls group a couple of years ago. It was very successful and the girls had a great time. However, it was an add on and we did not have the capacity to repeat it. This summer we are looking to do it again for some of our girls based in North London. It will be interesting to compare the groups and see how those girls in our mixed groups feel compared to those in a girls group and to get the staff to think about confidence and friendships in particular.

As autism is a lifelong condition this conundrum applies to our adults too. Women with autism face the same struggles as men but there is the added vulnerability of exploitation and abuse. At Resources we have seen several of our young adult women exploited by predatory older men and we are working on a social story book to help them think about appropriate behaviour and keeping safe but they also need to be independent and have a right to a sexual and emotional life as we all do. This is much more difficult for women to navigate and to get right as the risks are greater. Many of our young women desperately want to have children and there is a fear from some professionals that their autism means they will not make 'good' mothers. Can empathy be learned when it comes to your own child?

As with everything I look at in this area it appears that the answer is the very unhelpful 'it depends'. Just like those of us who are not on the spectrum every girl and every woman is different. Blanket statements are wrong and may lead to a great deal of unhappiness. We must give our girls and women as much choice as we can and as much information as they can absorb and allow them to make the same mistakes as our boys and men but we also need to make sure they are safe.

That most carers are female is not a new revelation but that too is a factor in this debate. I am regularly asked for male carers for our boys because their caring environment (mums, teachers and so on) are female and it is felt a male role model is important. Most of our befrienders are female and we struggle to get male volunteers. Caring and volunteering remain in the female domain, if a little less than a few years ago. My male staff are wonderful and we have worked hard to attract them and keep them but should we celebrate them more than my equally wonderful female staff?  Mums still take the brunt of caring and I have mums in their 80's caring for men in their 40's and 50's. The world remains unfairly balanced and we need to find ways to redress and compensate for this.

I will leave the last word on this to Jean who is an adult with autism who volunteers with us. She says that when she was growing up she always felt like an outsider, she had no one to talk to about being a girl or a woman it was all about her 'problems'. She is now in a  relationship and feels like she is  an insider working at Resources but it took a long time to get there. 'Give us time and we can make the right decisions and get on with our lives' is her message. I hope that by giving some of our girls just a little time and space that is theirs we can help them understand themselves and gain in confidence to walk alongside our boys into an adult life that is fulfilling and hopefully accepting of them as they are.

If you expected to find a definitive answer to the gender question I am sorry to disappoint. I hope though it gives some food for thought and is a discussion that we can continue to have over time.

Please do feel free to comment, or share your views. It would be great to hear from you.

March 2013

There are a great deal of unknowns for Resources for Autism in the year ahead and like many small and medium voluntary organisations we are treading tentatively into the brave new world of framework agreements, individual budgets, joint commissioning and all kinds of new ways for local authorities to use the limited funds they have.


The impact on us is huge as we have a tiny infrastructure in comparison to our service base. Despite this it is hard for us to compete in what is now described as a ‘market place’. I have real difficulty in using the language of commerce to describe services that I believe are essential to those with autism. For me, day to day support, activities that enhance life and enable independence, support for fragile families, tackling acute loneliness and isolation and enabling communication and social networks are not the same as choosing which computer to buy or where to go on holiday or if you can afford that new dress. They are a fundamental right for all of us and to describe them as products moves them from a ‘need’ to a ‘want’. Something that is necessary is quite different to something we can choose to have.


Choice is another buzz word and at risk of upsetting a lot of people I am most unhappy with it. If we were talking about a world of real choice where individuals had an infinite amount of options and an infinite amount of money to buy those options then there is choice. Choice is limited first and foremost by what is available and how much money families have. People need local, accessible services with qualified, experienced and consistent staff. They need that at a price that is affordable. We provide small, local and expert but the problem is that that can never be cheap. So how can I make the equation work? The dilemma is do I reduce quality to bring price down? Reduce the amount we do so we only serve those with money to fund it themselves? Or take the line that we will battle on for as long as we can but may have to close if we cannot do the right thing as a charity and provide for those most in need at a price they can afford and in the way that we believe best serves our community? These are questions without answers at the moment. Austerity really is very austere!


On a completely different note, April 2^nd is World Autism Awareness Day. As stated by Ban Ki-mood Secretary-General of the United Nations:

"Autism is not limited to a single region or a country; it is a worldwide challenge that requires global action."

It appears likely that the 1% level of autism in the population is reflected world-wide with no difference in race or geography. That is an enormous challenge to World Leaders but perhaps one that they are nearer at least having the will to tackle as information and knowledge is shared.

 We are doing our bit on April the 2^nd and would encourage you to join us. Please take a minute on the day to use your social media to highlight the day and to wish everyone a happy World Autism Awareness Day. Tell them about us and perhaps about your connection with us. Remember the #resourcesforautism if you use Twitter or our Facebook address which is facebook.com/pages/Resources-for-Autism/309322822458491 and give us a ‘like’. Perhaps your actions will encourage one of your friends or acquaintances to volunteer with us or make a donation or even both, helping to make every day a Happy Day for someone with autism and their families.

Autumn 2012 Roundup.

It has been a while since I last posted a blog and a great deal has happened at Resources for Autism and in the wider Autism world.

Perhaps the most significant thing that is about to happen is the new diagnostic criteria known as DSM-5. This is the first major change in the criteria for many years and is mostly very welcome. I say mostly because change usually involves some controversy and this is no exception. The best new element of the criteria is that, for the first time, sensory sensitivities become part of the recognised elements of autism.  We all know how crucial an understanding of the sensory world of someone on the spectrum is in helping to improve their quality of life and yet this has never been 'officially' part of the diagnosis process. That has now changed. Aspergers will no longer be a category of diagnosis but just a 'level' of autism. There will be three levels or bands based on 'severity'. This worries me, not on a clinical front, but on how these might be used in a time of financial restraint and scarce resources. I am something of a cynic and worry that some services may become only accessible for those with level 1 autism or extremely high need. Judge for yourselves by taking a look at the new criteria at http://www.dsm5.org/proposedrevisions/pages/proposedrevision.aspx?rid=94.

With Mr Osborne talking about yet more cuts to 'welfare' I remain very concerned about funding our future. It is easy for people to miss the fact that this general term covers everything that impacts on the lives of those in our society who need help and support. That includes those with autism and everyone with any disability. There seems to be a great blurring of what 'welfare cuts' mean in reality to huge numbers of people. It is not just to do with benefits, although talk of cutting these even further is immensely worrying for many disabled and non-disabled people, but it is also about reducing funding for services. I have heard from all the local authorities who buy our services that they are likely to be forced to cut the level of provision in 2013/14. Their financial year begins in April, which is when contracts should be renewed, and all are saying they do not yet know what their budgets will be but it is likely to be slashed. Whereas personalisation should mean more choice, individual budgets generally have such low levels of funding and such variable funding depending on where you live that many families find themselves unable to 'choose' what they would like. If funding is not available then the choice will reduce further as organisations close. Worrying indeed!

The good news is that Resources for Autism continues to grow and to provide for more and more people. We were lucky enough to gain a West Midlands Lottery bid to enable us to extend our services to adults in Birmingham and to those living outside of the Birmingham City boundaries generally which is wonderful and our team in the West Midlands have jumped at the chance to extend and grow what we do. Also in Birmingham our first Under 8's service gained OFSTED accreditation and is going from strength to strength.
We held a pilot residential holiday break for young people with high needs over the summer, offering 2 nights at a youth hostel base with loads of activities. It was a great success but very expensive to run so we are looking at the lessons learned so we can do more and better in the future.

In London our adult services have more than doubled in size in the last 3 months with a new 'Au Struck' social group opening  in Haringey, a confidence group developing in Islington, our 19 - 25 social group becoming more and more adventurous, so many multi-sports participants that we have had to split the group in two and a third adult art based social group about to open. The need for adults to have something fun, accepting and safe to take part in is evident in both London and Birmingham and we are rising to the challenge as best we can.

To round up, lots of positives, a bit of worry and a great deal to do. I will keep you posted and thank you for taking the time to read and to be interested in Resources for Autism. If you have any questions or suggestions, please do get in touch.

Winter 2011

With so much bleak financial and global news at the moment Resources for Autism appears to be bucking the trend in gloom and doom. Currently we are awash with words like ‘expansion’ and ‘extension’ and ‘increase in delivery’ and I am delighted that is the case. It is estimated that 1% of the entire population are on the Autistic Spectrum. That is a lot of people needing appropriate support and care. As an organisation we are committed to improving the quality of life for both our users and their families and it is only by providing high quality, local and accessible practical services that we can do so.

We have an astute group of Trustees who ensure that we do not over-reach ourselves despite increasing demand and their rule is that if we do not have the funding to run something for at least a year then it cannot start. That sometimes makes it hard to begin something new and innovative as services need to exist to prove they are effective. It is in those circumstances that we need imaginative funders who are prepared to take a risk and the Cinven Company Trust has done just that with our new Autism to Autism project. For two years they are going to be funding a new project that will support adults with a diagnosis of Autism or Aspergers Syndrome to help others on the spectrum as volunteers. I believe this project will do much more than it says on the tin. Giving adults with autism the opportunity to work, albeit voluntarily, in an environment that is relatively safe but that is part of the wider community, is the first step for many into the world of paid work. Some of our adults will always need support but this may be just having someone to check in with each week to gain reassurance or to intervene on their behalf if things are going awry but before they turn into a disaster. For many just gaining confidence and learning the rules that govern survival in a work environment will be enough and this project will give those skills. Cinven have taken a risk supporting us and we are going to make the very best use of their generosity to prove that adults with autism have a great deal to offer their community given the chance. One of our current volunteers who gives invaluable help to us three days a week says of her experience ‘‘All my life I have been on the outside looking in. Now I am content looking out and that would not of been possible without the kindness and understanding I have received from everyone at Resources for Autism’ She has a diagnosis of autism and has had really awful experiences of trying to work and hopefully her time with us is giving her the confidence to try again when she identify a suitable paid vacancy with an employer who is willing to make the very few adjustments necessary to make her comfortable in a work setting.

Another huge positive is the appointment of our new West Midlands Manager. Laky Sahota is a very experienced voluntary sector manager who is joining us to help develop our services in the West Midlands. He has many years experience in play and youth work settings including a long stint at managerial level with Play England. He has already brought energy and charm to our team and I have no doubt that his skills will see our services in the West Midlands continue to develop and thrive.

I am never complacent and I am aware that we have been extraordinarily lucky in weathering the external storms so far but I remain very positive about our future and there are three main reasons for my optimism.

• · I have a wonderful staff team who are well trained, well supported and full of compassion.
• · We provide services that people want and value and that meet our users needs.
• · We have your support!

I am always pleased to hear from you and if you do want to get in touch just email me at liza@resourcesforautism.org.uk

I hope the New Year brings you peace, happiness and good health.

.

Autumn 2011

I am writing this on Halloween, traditionally the day that we are meant to experience all kinds of horrible things. Sadly for many of our families horrible things happen all too often. This half term we only provided one half term holiday scheme and many parents have been deeply disappointed that there has not been more. Some report absolutely no alternative for their children during the week and have had to miss work to spend a frustrating and isolating week at home with no activities their child was welcome to attend. It is hugely sad that organisations such as ours have to chose between providing services or between a little for the many or more for the few, but with limited income that is what we are faced with.

Halloween is also traditionally a time of taking stock. It is when people looked at what they had achieved over the bounteous spring and summer and how it would last them over the hard winter to come. Resources for Autism has been extremely lucky (or extremely well managed!) and have been successful at winning tenders for services, achieving positive results from carefully crafted lottery bids and generous grants from many Trusts and Foundations. However, we have to manage these with care and ensure that our funding lasts not just the winter but for the foreseeable future while we continue to try to find new and inspirational sources of money to enable us to provide the services our users want and deserve.

Amongst those services, we have just started an exciting women only adult group in partnership with Community Focus. Girls and women with autism often find themselves in groups dominated by boys and men as diagnosis is around 75% male. For some having contact with other girls and women can be reassuring and helpful and the group is creating a great deal of interest. Also new is our Autism to Autism volunteering project which is about to get off the ground. We have a number of volunteers who themselves have a diagnosis of autism or aspergers and who want to help others. They are excellent volunteers but often need just a little extra support and this project aims to ensure that support is available and that we can grow this project to attract more people with autism who would like to contribute to the world around them but are denied the possibility due to their difficulties.

Our West Midlands service is about to grow too and the summer seeds have been sown for this with a Reaching Communities grant from the Big Lottery and a new manger for the region about to be appointed. Resources for Autism has very few managers. Our aim is to spend every penny we get on front line services but those services do need someone to keep the wheels oiled and as it is now clear we are set to stay in the West Midlands and hopefully continue to grow what we do this seems a sensible move which will hopefully be cost effective in the long run.

So this Halloween finds me looking back over a successful summer and cautiously optimistic for the winter ahead. I don't feel too scared of the demons and devils out there but I am aware that wearing garlic round my neck and feeling hopeful is not enough and we must continue the hard work needed to offer the very best services we can for as many as we can while we look ahead for an even more fruitful spring and summer next year.

As always I welcome your comments and am always delighted to hear from anyone regarding what we do and how we do it. liza@resourcesforautism.org.uk

Very best wishes