Newsletter - Autumn 2015

Welcome

Hi all,

Welcome to the belated Autumn edition of our newsletter.

It seems like a very long time ago now but I hope you all had a nice summer and it's been good to catch up with you all once again.

We are busy planning some fun activities for Christmas which will hopefully include a disco for the children (with Santa!), a private screening at Reel Cinema in Morecambe, a lunchtime meal in Lancaster for parents/carers and a Christmas coffee morning for our adults. We will send out a flyer in November with more details so please check your e mail or our website nearer to the time.

Thank you to those who were able to attend our first AGM in September. Please keep your feedback coming as to how we can help and support you. We really do take all your comments and board and try to help as best we can.

Several members have told us they would like evening guest speakers as they are unable to attend our daytime meetings. Sadly this is not always possible as many speakers don't work in the evenings but we will start taking notes from our daytime meetings and can feedback to people in this newsletter, on our facebook group and we will endeavour to setup some evening support meetings. We have exclusive use of Morecambe library on most Wednesday evenings so we will try to organise something after the half term holiday.

We've been getting lots of question about transition into adult services and I hope we've answered some of them in this newsletter. We've also included a page for our adults with more details on an adult group we've set up.

As always -if you would like to get in touch with us then you can do so via e mail landm@nas.org.uk or phone 07500 881 831 Please note the phone will be manned on school days only from 9am-3pm. If no -one answers please leave a message and we'll get back to you as soon as possible.

Support Groups

Information mornings at Firbank children's centre, Lancaster

10am-12 noon.
Wednesday 4th November - informal chat, no guest speaker
Wednesday 2nd December - Christmas lunch (venue to be announced)
Wednesday 6th January - informal chat, no guest speaker

Information mornings at Carnforth children's centre

9.30am-11.30am.
Open to anyone with an interest in autism
Monday 9th November and Monday 7th December

Adult support group, Friends meeting house, Lancaster

Friday 6th November - drop in session for adults with a diagnosis or in the process of requesting a diagnosis from 10am-12 noon.

Friday 4th December - Coffee, mince pies and a shared lunch (jacob's join) from 10am-1pm.
This session is open to all who would like to know more about this group. Lionel Rice from Making spaces will be coming between 10-11am to chat about the support his organisation can offer.

There will be no meeting in January

How we communicate with you

There is so much useful information coming into our branch that we would like to share with our members but we are careful not to bombard people with too many e mails.

The best way for you find out about any activities or events is to check our website www.naslandm.co.uk  In addition, we also post numerous links to interesting articles on our facebook page and facebook group. The group is for members only and the facebook page can be viewed by everyone.

Several of our members prefer to receive communication only by post. We are more than happy to post newsletters but it is not possible to keep people informed about everything we do by post so please check our website if you are able.

If you would like to receive e mails instead of post then let us know and we can change it for you.

Campaigning for change - Waiting for a Diagnosis

As you know we have been having regular meetings with the clinical commissioning group (CCG) and staff from the child development centre for a while now in order to discuss, and hopefully improve, the diagnostic process for our children with autism. Because the waiting list for the MAAT panel (multi agency assessment team) was so long the CCG approved funding to clear the backlog and several Paediatricians can now diagnose the more "obvious" cases without going to MAAT which should reduce the waiting time for other families.

We received some very disappointing news yesterday that the MAAT panel is no longer in a position to meet up to discuss any cases. The MAAT panel was never a commissioned service in the sense that staff were never paid specifically to meet up and discuss cases. They used a combination of their admin time and goodwill. The lack of an appropriately commissioned service means the panel can no longer meet and therefore there is currently no diagnostic pathway for this group of children.

Our NAS branch has been in contact with our legal and campaigns department at head office to see what can be done about this situation and it will remain at the top of our campaigning agenda until it is resolved. We will shortly be sending out a survey to gather evidence to help our campaign so please do take the time to fill it in. We hope to report back to you very soon with a further update and staff from Longlands and the child development centre are doing all they can to try and ensure that a service is up and running as soon as possible.

In the meantime, you may already be aware that the NAS is currently asking families/adults to contact their MPs about the time it takes to receive a diagnosis. If you would like to have your voice heard please click on this link and an e mail will automatically be sent to your local MP, encouraging them to raise this issue with Health Secretary Jeremy Hunt and NHS England CEO Simon Stevens. This campaign has already been successful in the sense that, for the first time ever, the NHS will start measuring the number of people diagnosed with autism in every area of England. This information can play a vital role in getting diagnosis waiting times down and providing a more accurate picture of local need so that the right services can be set up to meet it. There is a long way to go but please start by helping us to raise this as a national issue.

e-activist.com/ea-action/action?ea.client.id=10&ea.campaign.id=42082 



Training and Education

Sensory Awareness seminar

We are pleased to announce that we have enough funding to book a Sensory Awareness seminar for parents/carers with Julia Dyer who is an advanced sensory integration practitioner in the North West. Unfortunately she is fully booked up for this year so we are planning on inviting her sometime in the spring. We will let you know as soon as we have a date.

Anger Management NAS training module

Myself and Lucy Ellis hope to roll out our "Anger Management" module in the New year. This is a NAS course for us to run as parents/carers for the benefit of other parents/carers and will include a brainstorming of ideas and sharing of experiences. It will require some pre-existing knowledge of autism in order for people to benefit from this course.

My World

My world is a free NAS autism teaching resource to help staff working with children with autism in schools.

There are different programmes that schools can sign up for to give advice on early years, primary, secondary and young adults (18-25)

The resource includes articles from education experts on a variety of topics such as sensory issues, bullying, behaviour, exclusion and socialising.

Participating schools/staff will be sent information via a fortnightly e mail. We would encourage parents to pass on this information to their childs' teacher/ SENCO and we will also be sending out flyers to all the schools in the next few months.

For more information on some of the topics covered, and for a link to sign up to My world for free, please go to

www.autism.org.uk/working-with/education/myworld-term-1-resource-page.aspx 

There is a very good video link on the following website on how children with autism in mainstream can be supported

network.autism.org.uk/content/my-world-campaign-launched-national-autistic-society 

Fundraising



A big thank you to Plas-Tech who kindly donated money for us to book two coaches to take our members to Blackpool lights.

Thank you to Carnforth Rotary club for their kind donation and for inviting Debbie Callender as their guest speaker at one of their dinners to talk about autism and our branch activities. The lovely ladies of the Inner wheel have volunteered to prepare the buffet at our Childrens' Christmas disco and we are extremely grateful for their continued help and support.

Thank you to Leona Pye for donating half of their team sponsorship money for "Bad Ass Mucker". Monies raised will be shared between our branch and Morecambe Road School where two of the runners (Allanah Pye and Emmen Balmer-Hall) attend.

Thanks to David Willis for providing the buffet for our AGM. David is one of our adult members and has just started his own catering company. We can highly recommend him - especially the home made sausage rolls which were simply delicious! For more information contact him on davidwillischef@yahoo.co.uk

Other donations have been received from Wallings ice cream shop/farm and various people who have donated at our information stalls. Thank you from all of us !




Groups for Children

There are many groups in the area which are very welcoming of our children. More details, including cost and contact details, can be found on our website or by contacting us. Please check first to see if there are places and also if they are running in the holidays.

All non NAS groups are recommended by, or run by, our members.If you have a good experience of a group then we are always keen to hear about it so we can share with others.

NAS Groups

Other Groups

Kids United - Mondays 5-7pm at the Clubhouse (formerly Morecambe Mencap) for any child with additional needs and siblings.

AOK - Wednesdays 1-3pm at Lune Park children's centre. Peer support and kids activities (0-8) with an additional needs .

Stay and Play, Unique kidz building, Woodhill Lane, Morecambe - Wednesdays 10-12pm. Coffee morning with playworkers available

Wise up workshops - After school/ holiday drama clubs on various dates in Morecambe and Lancaster.

Multi-ball skill sessions, Saturdays 10.30-11.30, Morecambe globe arena. For children with autism and their siblings

Trampoline session at University of Cumbria - weekly on Saturday afternoons for children with additional needs

Disability sports sessions Salt Ayre,-Tuesdays 3.45-4.45. For children (8+). Various sports activities and free swim after.

Meeting at Longlands Child Development Centre

Much of our recent meeting was to discuss an action plan around the absence of the MAAT panel but we did talk about ongoing issues and concerns that you have raised with us.

Some good news - funding has been approved for a learning disability nurse in this area. We are unsure if it's a full or part time position but will keep you posted. We said that we hoped access to the service would be based on need and not on IQ.

There was agreement on the difficulty of diagnosing girls with autism as they can present so differently to boys and often don't meet the current assessment criteria. Other diagnostic tools such as ADOS and DISCO might be more suitable and this is something we will continue to raise at a local and national level. Staff are aware of, and sympathetic with, this issue and we will keep it on our agenda for future meetings.

With regards to Pathological Demand Avoidance (PDA), although it's now widely recognised as being part of the autistic spectrum of disorders it doesn't fall under the DSM (Diagnostic and statistical manual) criteria. At the meeting we mentioned how the diagnostic tool DISCO (Diagnostic Interview for Social and Communication Disorders), which was devised by Lorna Wing and Judith Gould, could be used to highlight whether a child may have PDA. We distributed material from the PDA society which they were very keen to read. Again, we will keep it on our agenda

www.pdasociety.org.uk/professionals/awareness-matters-booklet 

Barnardos workshops/EHC plans

Parent/carer workshops

Over the past few months Barnardos have been giving talks at various venues about Education, Health and Care (EHC) plans.

Barnardos are the Independent Supporters in this area and are here to help families or young people during the process of developing a statutory EHC plan or transferring from a Statement of Educational needs or Learning Difficulty Assessment (LDAs)

They talked in detail about the different sections of the EHC plan and how important it was to provide as much relevant information as possible. The emphasis is on what the child can do rather than what they can't do and there is more input from the child and the family into developing the plan for their future. Once in place, the plan will stay with the child until they are 25, as long as they stay in education. They don't currently apply to Universities. It will also bring together their education, health and social needs so everything is in one document.

A child will only be issued with an EHC plan if they are falling behind academically at school ie not keeping up with their peers or the national standards. Sadly we hear from many parents who feel their child is falling behind but the school don't agree and they have been put off applying for a plan.

There is a clear pathway on the local offer website and parents/carers can request an assessment and start the process themselves if they believe there is a need. Barnardos can also help you with this.

More information can be found on the local offer website www.lancashire.gov.uk/children-education-families/special-educational-needs-and-disabilities/education-health-and-care-plans.aspx 

Barnardos can be contacted on Tel 01772 629470 E mail IndependentSupporters@barnados.org.uk

For those children who don't meet the criteria for an EHC plan this shouldn't mean they won't receive any help at all. If you have any questions or concerns then a good place to start would be to talk to SEND information advice and support service (formally called parent partnership) who offer impartial and confidential advice.
Tel: 0300 123 6706 Email: information.lineteam@lancashire.gov.uk

www.lancashire.gov.uk/children-education-families/special-educational-needs-and-disabilities/help-for-parents-and-carers/information-advice-and-support.aspx 



Aspiration workshops for children

An important part of the EHC plan/process it to involve the child and get them thinking about their goals and aspirations for the future. In order to help them with this, Barnardos can deliver aspirations workshop which is getting them to think about careers and their future through some fun games and activities.

We have organised such a session which will take place at Morecambe library on Wednesday 11th November from 6.30-7.30pm. Parents/carers must stay on site but we can provide tea and coffee in a separate room and will put on a movie and some popcorn for any siblings. There will be no charge but places will need to be booked in advance. The age range for this session will be secondary school

Other information

Transition into adulthood

We get lots of questions from parents about transitions to adult services. My son has just gone into year 9 which is where the transitions process starts and so I also have a long list of questions that need answering!

We have asked the NAS transitions team for some help and guidance and they have agreed to come and talk to our members in the New year about what should be happening nationally. But it would also be very useful to hear from our members about their experiences locally and if you are happy to share your experiences (good and bad) please do get in touch.

One of our parents has kindly agreed to share her journey with her son and I will include this in our next newsletter. We also hope to include some information about the various budgets and what they can and can't be used for, a subject which can be really confusing for adults and parents/carers.

In year 9:

If your child has a statement of education needs or an education health and care (EHC) plan, then discussions will take place to get everyone thinking about the future for your child after they leave school and go into further education and move into adult services.

A worker from the Young people's service (YPS) or the Transitions team will meet with you, your child and the school to start creating a transition plan.

A successful transition plan needs a holistic approach and should involve everyone who's relevant to the young person and their future. The Care Act 2014 gives local authorities a legal responsibility to co-operate with partner organisations such as local NHS bodies and to ensure that there is co-operation between adult care and support services, housing and children's services so that the transition is as smooth as possible.

If your child has special educational needs but doesn't have a statement or an EHC plan then the YPS service can still give you guidance and information to help you make future plans after school.

If your child has more complex needs which is usually (but not always) indicated by a higher statement banding of E/F and above, then you should be assigned someone from the transition team rather than a YPS worker. This is because the child is more likely to need some form of adult social care when they are 18 and continue to need help and support.





In Year 10

The child and their family should be supported to explore more specific courses or places to study e.g. through taster days and visits so that provisional plans can be prepared.

In Year 11

Plans should be firmed up for post-16 options and should include some contingency planning. It's vital that all options are explored eg available schools, services, pathways to potential employment, residential options etc

There is lots of information on line about the transition process. Below are just a few;

www.autism.org.uk/living-with-autism/transition-to-adulthood.aspx 

network.autism.org.uk/knowledge/insight-opinion/transition-secondary-school-adulthood 

For more information on the transition process in this area call 01524 586160 (transition service) or 0800511111 (YPS) or visit their website

www.lancashire.gov.uk/children-education-families/special-educational-needs-and-disabilities/education/moving-into-further-education.aspx. 

If a child has "complex" needs and is likely to meet the support criteria for adult services health and wellbeing (ASHW) then the Transition Service will support them through an assessment to determine what their needs are and what size budget will be required to meet those needs. This should be done so everything is in place for their 18th birthday. Note: you do not need to have an EHC plan to have this assessment. The local authority must carry out an adult care transition assessment where there is significant benefit to a young person or their carer in doing so and they are likely to have needs for care or support after turning 18.

It's estimated that less than 4% of the adult population with autism access adult social care services and without a budget many struggle to live a full and independent life. There are some very good service providers in this area but without an appropriate budget many adults struggle to access their support and services and this is something that needs addressing.

Another transition change is for anyone accessing Child and Adolescent Mental Health services (CAMHS), they will be moved over to the adult service (AMS) when they are 16. We will continue to argue that it should be 18 and not whilst they are in their last year at school which can be a very difficult year due to all the changes.

Employment for adults with autism

In the next few months we hope to have talks with various people about increasing employment opportunities for our adults with autism. Labour MP Cat Smith has promised to help us set up an employment workshop with local businesses and we are also looking at other areas/local authorities to see what models they use.

We are increasing our presence on the employment sub group of Lancashire's Autism Partnership board and if anyone has an interest in this area and would like to join us please do get in touch.

We will be meeting with Autisan/ Creative Enterprises who run the NAS Whalley Abbey coffee shop and give work experience to adults with autism. It is a bit far to travel and there is a currently a waiting list but it would good to see how the scheme operates and whether we could work with local businesses to set up something similar in this area.

NAS Whalley Abbey coffee shop
www.autism.org.uk/news-and-events/news/whalley-abbey.aspx 

There is also an organisation called Autism Initatives who arrange social enterprises in the North and it would be interesting to see if they could start something in this area www.autisminitiatives.org/social-enterprises/ 

Our adult support group in December would be a good time to chat to us about this if you are able to come along.

Adult diagnosis

A few months ago we ran an article about the diagnostic pathway for our adults in this area. This has been in place for a while now and all GP practices have been informed about the adult pathway.

Unfortunately we are still hearing from adults who have been to their GP and they don't know what the process is or where to refer them to.

We are very eager to hear about these cases so that we can pass on the relevant information to these GPs and to prevent it happening to someone else. This will be done confidentially and your name will not be mentioned.

Number of adults getting social care


The National Autistic Society reports on the publication of the first recorded statistics on the number of autistic adults using social care services in England.

Every Council has to report each year on the needs of those they support, and this data is collected across England. The number of autistic adults recorded as using social care services in this publication is however noticeably low, at just 17,000 out of an estimated total of 460,000 autistic adults in England.

This is the first set of annual data to record this important information, Sarah Lambert, Head of Policy at the NAS, described the reporting of this data as "a milestone in the long battle to improve autism services....but central and local government must start recording the numbers of all people diagnosed with autism so they can meet their changing needs, from birth to old age".

Changes to Employment Support Allowance

Adults support group

What is our Adult Social Group?
It is a support group run by volunteers of the NAS Lancaster and Morecambe branch for adults (18 years +) with Autism. Its purpose is;
- To provide a safe and friendly social environment free from judgement
- To provide social opportunities and activities
- To foster the development of social confidence

When and where do the group meet?
10am-12 noon on the 1st Friday of the month in the William Stout room, Friends Meeting house, Lancaster, LA1 1TX. The building is close to the zebra crossing as you leave Lancaster train station to walk into town.

Members do not have to stay for the whole session and can come and go when they please.

What does the group do?
There will be refreshments available for a voluntary donation and members can read and borrow books from the library. Activities, events and guest speakers can be organised at the request of members. Each month members will discuss and plan what to do at the next session. Members can chat with the volunteers or other members but no pressure will be placed on anyone who doesn't wish to interact.

Who can come to this group?
Adults with an official diagnosis of autism or currently in the process of requesting a diagnosis.

Adults who don't have (and don't wish to seek) a diagnosis will be welcome at our other information meetings. We will, however, open up this adult support group once a quarter to enable people to meet each other and to pass on any relevant information. The next such meeting will be on Friday 4th December.

All adults must be capable of attending independently as the volunteers are not able to offer any care or supervision. Members are more than welcome to bring a friend or relative for emotional support.

How do I join?
Members are requested to contact a volunteer before attending in order to ensure that it will be a suitable group for them. They will be asked to complete a registration form with some contact details and a short questionnaire to help us plan our activities.
Any questions should be directed to Gill Mann or Kizzy Felstead via e mail landm@nas.org.uk or by calling 07500 881 831



What the drop in sessions WILL NOT provide:
- Counselling
- 1:1 support/advice
- Therapeutic interventions
- Tailored sessions for an individual - the sessions are for a group and individuals may need to be flexible with their expectations

What can I expect from the group volunteers?
They will;
- Adopt the National Autistic Society's core values, policies and procedures and fairly represent the organisation
- Do all they can to create a safe and welcoming environment for all those attending
- Treat all other volunteers and members with respect. Any physical, emotional, verbal abuse or rudeness towards others will not be tolerated
- Be visible. All volunteers will have a NAS T shirt and a badge showing that they are a volunteer so you know who you can get support from
- Maintain confidentiality at all times
- Be reliable. They will make it clear when and how they will be available and meet these expectations, or provide as much notice as possible if they cannot.
- Respond to queries within the agreed time limits. This includes acknowledging all event bookings.
- Listen to all member concerns and respond appropriately.

What will be expected of me when I attend the group?
I will;
- Be patient and considerate to other members of the group.
- Be respectful and be polite to other members of the group.
- Not be verbally or physically aggressive towards any member of the group, a volunteer or the general public. Any aggression may lead to a suspension or exclusion from the group
- Let the facilitator know if I am not able to come on an activity that I have asked to go on
- Keep the facilitator informed of any medical problems they need to be aware of and any changes that may arise eg change of contact details
- Return all forms that are sent to me to book an activity I would like to attend, otherwise there is a possibility that I will not - have a place on that activity.
- Stay with the group at all times when on an activity which is not at the Meeting room. If I want to leave early I will speak to a volunteer so they are not waiting for me to come back.
- Agree to bring the correct amount of money for activities. I understand that the group cannot pay for any activity costs (unless previously agreed with the facilitator).
- I understand that there will be a trial period of three months from the first visit of attending the social group. After this both the facilitator and I will review whether the group is suitable for my needs. I understand that if I do not abide by the code of conduct I may not be able to attend group activities.