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

Summer is approaching and with it the worry for many families about what will happen when schools and colleges close or when regular carers go on holiday leaving those with autism feeling uncertain and often lonely.

Whilst RfA holiday schemes will be supporting hundreds of children in Birmingham and London with a week of specialist holiday play, most families want more and many adults find themselves with nothing at all to do over the summer weeks.

Going away on holiday can be extremely tricky when a family member hates change. RfA can and does help with practical strategies to make travel a little more bearable. Just remembering to say that not only will you be coming home again but that everything will still be there and the same on your return can be very reassuring as can photos of exactly where you are going and not saying just that you are going to the airport to get a plane but that you are going to the airport to wait and then you will catch a plane, a very different scenario and helpful in keeping stress levels under control!

It is these seemingly little things, one week of appropriate holiday play; strategies to make travel less of a nightmare; a couple of hours a week where a teenager can be themselves with friends who understand them; volunteers willing to support a child to the park for an hour or two giving them a bit of fun and the family a break; caring and expert answers to difficult questions; someone to talk to when you need them; all of these little things go some way to making the lives of those affected by autism and those who love them, a bit easier.

Although I would love us to do more of the 'big' things such as providing really excellent carers every day round the clock for those who need it or running schools that really cater for the needs of children with autism or supporting isolated adults whose behaviour is so challenging that they are excluded from most areas of life to live in housing that is designed to suit their needs; the reality is that, for now, I have to be happy that we do those 'little' things incredibly reliably and incredibly well.

It will never be enough for me or for our users but when a teenager is able to say of one of our Birmingham Youth Clubs:

'Like here nobodies laughing at people about who they are.'

It speaks volumes of his previous experiences and of how we manage for a little time in his week to get it right.

I know that those children and young people lucky enough to have managed to get a place on our schemes and those adults who will continue to attend sports groups, arts groups and social groups run by my amazing team will have fun over the summer and I hope that those who have not been quite so lucky this time will see us more able to provide for them in the future.

This time of year always makes me feel hopeful and despite all the doom and gloom around I do hope we will be able to grow our services and respond to all the need out there. If we can help you with either the little or the big things then do get in touch and in the meantime I wish you a happy, warm, safe and relaxing summer.

I am writing this having just watched the dreadful Panorama documentary ‘The Abuse Exposed’. For those who did not see it this was a documentary on sustained abuse in a private hospital for those with learning difficulties and/or autism.

The abuse was terrifying and terrible. That any human being, let alone those employed as carers, can treat other humans in the way that we saw on the programme is almost impossible to believe but there were other things that were shocking in the programme. The response from the CEO of the company who managed the hospital was paltry to say the least. He was sorry, he did not know, it won’t happen again. None of that is good enough. As the senior manager for Resources I know the buck stops with me. If there is anything in any of our services that is not good enough, then I am responsible. I have to make it my business to know. If there is any doubt at all I would always err on the side of action. So long as we claim to care we have to make sure that we care to the highest standards all the time. There is no mid way.

The programme made me even more determined to continue to develop our adult services to ensure that those who wish to and who are able to remain in the community are helped to do so. It is essential that there is support available in community organisations for both individuals and for their families. This serves several purposes. Adults with autism need somewhere they can be accepted, have fun, have expanded opportunities, be listened to and be heard. It is great if we can also help extend social and practical skills but that is a bonus. It is vital that there are community organisations which are just there for their users, not necessarily tied to achievement but just a place that is safe to be and where everyone can be themselves. The community should also be a place of vigilance for those who are vulnerable. We are responsible for each other and we must speak out if we think that anyone is being hurt or treated with a lack of care and respect. The minute someone is in a locked institution the opportunities for hidden abuse increase. That is not to say most hospitals and residential institutions are not good and caring places but where there is no one seeing in every day and at any time then the opportunity for the kind of torture exposed in the Panorama programme increases.

Parents and carers need the chance to voice their concerns about aging and what will happen to those they love when they die. The Panorama programme will only add to the anxiety that most parents have as to who will end up looking after their adult children. As parents we all believe no one can love our children as much as we do but we must have faith that professional carers will, at the very least, be kind, well trained and want to do the best for those they look after.

At Resources we are committed to extend the number of individual carers who can offer care on a day to day basis but that will always be linked to groups so that those carers have support, supervision, can see best practice from others and continue to learn. We must offer training and respect to our carers so that they know their work as valued and valuable and in that they in turn give respect to the adults they support.

None of this is rocket science but it does take commitment and money. Good care does not come cheap, however money does not guarantee good care either. The hospital provision featured in the programme was not cheap, lack of money is not the only cause of poor services. Commitment from the top to high quality services and caring staff is the most important thing and at Resources for Autism that commitment is absolute from both myself and our trustees.

It is the party season and I am looking forward to 2011 with mixed feelings. There is huge concern about funding of services from parents, users, other organisations and, of course, from our team here at Resources. The worst thing is not really knowing what is happening and what the future holds. Currently we are feeling quietly optimistic but keeping a close eye on things as events unfold. What is clear is that Aiming High for Disabled Children short breaks funding is ending everywhere on March 31st 2011.

That is very bad news for us along with many other organisations who offer short breaks for families with a disabled child. It is even worse for those families and their children. Short Breaks has been a runnaway success. It is rare for me to give praise for a particular funding stream to the extend of saying that this has changed lives but I unreservedly can say AHDC short breaks has changed and improved families lives dramatically.

Many of our children and young people have, for the first time, been able to access and most importantly enjoy a leisure service that is regular, reliable and accepting. Their families have been given time to relax, even if is just of a couple of hours and have done so in the knowledge that their young person is receiving a service appropriate to their needs. It has been fabulous!

It is essential that we learn from Aiming High. Our families have had their expectations raised and our children and young people have gained confidence and independence. It has not always been an easy journey but it has been an exciting one that has proved that children and young people with autism and with behaviour that may challenge others can and do have fun and make friends if they are given the right opportunities to do so.

Many of RfA parents have been kind enough to write to MP's and local Councillors to tell them the difference our service has made and it has been humbling to read their stories.

Thankfully we are not totally dependent on statutory (money from government) sources. We have a range of funders to whom we are deeply indebted and our services will continue in some form or another next year. There may well be changes though and I will try to keep everyone informed as I know what these are.

The coalition are committed to expanding individual and personal budgets and it may be that some of our previously heavily subsidised services will have to be paid for in that way. This will only apply to those who are eligible for these budgets but my advice to anyone with a disabled child or adult is to make sure you get an assessment done for an individual payment as soon as you can and make sure that assessment includes an element for leisure opportunities.

I think 2011 is going to be interesting and exciting. The Autism Bill should begin to make a difference to adults and I hope that our children will continue to benefit from some form of short break provision when the dust settles. It is just a case of making our voices heard and then waiting to see.

Whatever happens, all of us at Resources for Autism wish you a very happy, healthy and peaceful 2011 and please do keep in touch.

June 2010

I am writing this at a time of great uncertainty. Whatever your politics, the change of government mixed with the ongoing concerns about national finances leads to serious worries about all charity funding and Resources for Autism is not immune from this. I have always been a strong believer in having a wide range of funders as, over the years, I have seen good organisations collapse due to an over dependence on one funder or one kind of funder.

We gain our funding from Trusts and Foundations which are independent organisations whose only role in life is to fund charities. Most of them give small to medium grants for specific purposes (toys for example), some are generous or big enough to fund a member of staff for a year or so but that is rare and almost all of them will only fund an organisation once and then want at least a year off before they will consider funding again.

Our next main source of funding are local government contracts. These are wonderful but have serious restrictions tied to them. For example, if Brent fund a holiday play scheme, reasonably enough, only children who live in Brent can use it. They are also always time limited, usually for a year and very inflexible in what money can be spent on. This means that even if we are able to find extra funding for an element of the service we cannot stretch the provision beyond the original set date, rather it means that any money we can 'save' gets taken back by the funding authority.

Next there are generous individual donors - people who just like what we do and give us anything from 50p to £5,000 or even more. There is no way I can express my gratitude to them. This kind of money that we can spend where and when we need to is absolutely essential. Like our services, it bridges the gaps.

The other unrestricted funding we access is linked to events - like our current sky dive. People chose to have fun, run, jump, act, paint, entertain or whatever and the money raised comes to us. I hope that the pleasure gained from doing whatever it is somehow goes to reward the effort and the difference this kind of fundraising makes.

So, why am I concentrating on such a boring subject as money when the sun is beginning to shine more regularly and we are all shedding our winter blues?

Aiming High For Disabled Children (AHDC) was an initiative brought in by the last government and supported by MP's from all sides of the House. It focused on Short Breaks for two particular groups of children. Those with life limiting conditions and those with autism and challenging behaviours. It offered an opportunity for charities like ours to provide a range of imaginative and fun short breaks (play schemes, one to one support, youth clubs and so on) in areas where these have been few and far between.

We have been very successful at providing these short breaks and AHDC money entirely funds our services in Birmingham and many of our current holiday play schemes The future of this funding is now in the balance. No one knows if it will continue after March 2011. We will continue to seek alternative funding but this is a huge amount of money to find. Should I have not gone for it in the first place because it meant we were too dependent on one source? The answer to this is a resounding NO! We have met families and children who have had nothing at all in the way of out of school support in the past. We have shown them that it is possible to have fun with others however profound your autism and however much social groups may be a challenge for you. We have given some families the first real leisure time break they have had from their caring responsibilities for years and we have developed and expanded staff team of highly trained and highly professional workers who will never lose the skills they have gained thanks to AHDC.

I will do everything I can to ensure our AHDC services continue in Southwark, Haringey, Brent, Birmingham, Richmond and everywhere else. I can make no promises, as I said at the beginning, these are uncertain times. However, it is not just up to me. It is up to every parent to let their MP know how important these services are. They are not bad people but they cannot know everything about everything and it is up to us to keep them informed about why practical services run by the voluntary sector really matter and deserve to be funded even in difficult times.

Have a fun summer and please do keep in touch.