Think Autism An update on our plans to help you make the most of what you can do An EasyRead version of: Fulfilling and rewarding Lives, the strategy for adults with autism in England: an update (April 2014)
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Think Autism
An update on our plans to help youmake the most of what you can do
An EasyRead version of:
Fulfilling and rewarding Lives, the strategy for adultswith autism in England: an update (April 2014)
What is in this paper page
About this paper 1
What is Autism? 2
A word from the Ministers 4
Part 1 - What needs to change? 7
Part 2 - How we will check our plans 10
Part 3 - Making sure more peopleunderstand and know about Autism 14
Part 4 - The 15 important things to do 19
Part 5 - What happens next 43
1
About this paper
The Department of Health worked withother Government Departments towrite this paper. We are part of thegovernment in charge of healthcareand social care.
In 2009 a new law called the AutismAct gave adults with autism the rightto get services they need.
In 2010 we wrote a plan for adultswith autism in England. It was calledFulfilling and Rewarding Lives. Theplan told everyone how to follow thenew law.
We said we would check the plan in2014 to see what has changed foradults with autism.
This paper is about what we found outand what will happen next.
2
What is Autism?
Autism is a condition. It affects howyou deal with other people and howyou understand the world around you.
We think about 1 out of every 100people have autism.
If you have autism, you have it for yourwhole life.
People with autism are all different butusually have problems in 3 main areas.
3
These 3 main areas are:
1. talking to other people to say whatyou need and how you feel;
2. meeting new people and makingnew friends;
3. understanding what other peopleare thinking.
4
A word from the Ministers
Our plan is starting to make thingsbetter for adults with autism inEngland.
Local areas should have a person whois responsible for the services youneed.
People with autism are involved insaying what services you need.
There are some good stories aboutpeople with autism who go to collegeor have jobs.
5
Things are better for some people withautism when they move fromchildren’s services to adult services.
This is just the start.
Different parts of the governmentmust now work together to supportpeople with autism.
Local services should help people withautism to:
· get the right support;
· get jobs;
6
· have a better life and be part ofsociety.
People with autism, groups, familiesand carers told us what should bebetter.
This paper is about the 15 things thatwill help everyone think about autism.
7
Part 1 -What needs to change?
The most important thing is still forpeople with autism to:
· live life to the full;
· make the most of the things theycan do;
· live in a society that understandsand accepts them;
· be told quickly that they haveautism and get support if theyneed it;
8
· have services treat them fairly asindividuals.
We needed to update our plan to:
· include what people with autismtold us when we checked what haschanged;
· look at what has been done so farand decide what happens next;
· include new services andorganisations that can help peoplewith autism have better lives.
9
Lots of things have changed since2010:
· GPs now plan and pay for localhealth services;
· more people use personal budgetsto have choice and control overtheir support;
· there are new ways for childrenwith disabilities and their familiesto get support;
· services have to work together togive support to people;
· services need to make sure thatthey do not waste public money;
· local plans must think about howthese things can help adults withautism get the lives they want.
10
Part 2 -How we will check our plans
The Autism Act says we must check ifour plan makes things better forpeople with autism.
We checked last year and:
· nearly 2 thousand people came tomeetings to talk about the Act;
· over 1 thousand people answeredquestions on the internet;
· local councils asked people withautism and their families aboutservices in their area.
11
5 yearsWe will check again in the next 5 years.
The Minister for Care and Supportservices and a group called the AutismProgramme Board will keep checkingthe plan is working.
You can see all the papers they writeon the website: www.gov.uk
The Department of Health and otherparts of the government say it isimportant that:
· staff are trained about whatautism is;
12
· young people with autism havebetter support;
· local areas are helped to check ifthey are following the law aboutautism and our plan;
· different areas can show what theyare doing and let you say what youthink about your services;
· the police, courts and other laworganisations understand autismand how it can affect people;
13
· services treat people with autismfairly;
· new ideas about supporting peoplewith autism are shared;
· older people with autism are bettersupported.
Local areas must involve people withautism and their families because theylive with autism.
14
Part 3 -Making sure more peopleunderstand and know aboutAutism
3 things need to happen for peoplewith autism.
People with autism live in a societythat really understands and acceptsthem:
· be involved in your community, notjust services for people withautism;
· have champions who can makesure everyone knows andunderstands about autism.
15
New ideas, services or projects to helpyou in your community:
· different types of support,especially if you do not meet therules for getting services;
· support that helps you beforethings go wrong;
· support to be more independent orget a job.
16
Better advice and information:
· services that work together tomake it easier for people withautism and their families to get theinformation and support they need.
The Autism Innovation Fund is moneyto try new ideas to help people withautism.
These ideas help people with:
· advice and information;
· skills to be more independent;
17
· early support before things gowrong;
· employment and apprenticeships.
These ideas must:
· involve people with autism;
· use technology or new ways ofplanning or running a service;
18
· show how services will worktogether or involve other services,businesses or employers.
x We will look for ideas that also usemoney from organisations, services orgroups that are not part of thegovernment.
June 2014We will tell you more about this fundat the end of June 2014.
19
Part 4 –The 15 important thingsto do
1. Make sure my communityunderstands about autism andaccepts and includes me.
Health and social care services cansupport people to be part of their localcommunity. But everyone needs toThink Autism so you really belong.
Businesses must make changes sopeople with autism can enjoy thesame things as everyone else. Forexample, Autism Friendly times atcinemas or theatres.
People with autism, carers and groupswill help people in their areaunderstand autism better.
20
There could be an award fororganisations that show they reallyunderstand autism.
Autism champions or experts will helpchange things. We will tell you moreabout this by the end of June 2014.
2. My local area thinks aboutwhat is important to me. Iknow if they are doing as wellas other places.
Local councils must have an AutismPartnership Board or other ways toinvolve people with autism in planning.
21
The National Autistic Society havewritten a guide about involving peoplewith autism in Partnership Boards.There is information on their website:www.autism.org.uk
New laws will say adults must beinvolved in their support plans. If youcannot do this, your family or anadvocate must make sure you areinvolved.
Local councils must say what servicespeople can expect for children andyoung people. They must think aboutthe services young people with autismneed.
Local councils must involve peoplewith autism and their families whenthey check how they are using theseplans. They must make it easy for youto see how well your council is doing.
22
3. I want to link to other peopleand groups.
Adults with autism can find it difficultto make friends. Voluntary groups canhelp you meet other people who cangive support or advice.
It will be easier to know who can getservices from your local council. Ifpeople with autism do not getservices, they can still get informationand help from local groups.
Local councils must make sure theyhave the right services for people withautism and their families. Services thatgive a little bit of support when youneed it can stop things going wrong.
The Autism Innovation Fund will helpwith ideas for services like this.
23
4. I want everyday services tounderstand autism and helpme do things other people do.
People with autism can find it hard touse services that are noisy, busy ordifficult to understand.
The law says services must changethings if they can so people with adisability (including autism) have thesame chance to use them.
These changes are called reasonableadjustments. They mean thinkingabout things like buildings, trainingstaff, information and planning.
Autism Passports can includeinformation about you that showpeople what help or support you need.
They are not the same as passportsyou use when you travel outside theUK.
24
Other parts of the government will lookat changes to make it easier for peoplewith autism to claim benefits or go toschool or college.
Training about treating people equallywill help our staff understand whatthings are like for people with autism.
5. I want to be safe in mycommunity.
The new Victims Code says the policeand other law organisations mustsupport people who are victims(affected by crime).
People with autism can get extrasupport. There is also support forwitnesses (people who see a crime).
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Many people with autism can bebullied or treated badly on publictransport.
Drivers and other staff will be trainedabout disabilities (including autism).
Services will have to show how theykeep disabled passengers safe.
The Journey Assistance Card tellstransport staff that you need help totravel.
People can also be bullied on theirphones or computers. From September2014 all young people will be taughthow to stay safe on the internet.
26
6. See me as a person, not just aperson with Autism.
Adults with autism said many peopleonly think about their autism.
They have ideas about what peoplewith autism are like and do not expectyou to be different.
This can make it very difficult if youneed different types of supportbecause of your religion, sexuality orrace.
We will work with groups andorganisations in 2014 – 2015 to findout more about this.
27
7. I want the right support at theright time in my life.
More children are told they haveautism now.
In the past we did not know as muchabout autism so many adults did notfind out until they were older.
A doctor can help arrange for you tohave a test so see if you have autismand this can help you get the rightsupport and help.
This is important for adults who mighthave lots of problems but miss out onsupport or services.
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Each local area should have clearinformation about how to check ifsomeone has autism.
They should use information aboutpeople with autism to plan the rightservices.
The Care Quality Commission (CQC)and NHS England will tell us how eacharea is doing with this.
8. I want my local area to thinkabout autism and understandthe services I need.
Local councils need to know how manypeople have autism so they can planthe services they need.
29
x This is difficult because many peopledo not know they have autism, do nottell services about it or do not ask forhelp.
Local councils and GPs will get betterat writing down if someone hasautism.
GPs will be better at working with otherservices to support patients withautism and their families.
Advocacy services and other groupswill help councils find out how manypeople have autism.
30
9. Staff in health and social careservices understand howautism can affect me.
All staff in health and social careservices should be trained aboutautism.
Staff like social workers who find outwhat support you need must alsounderstand autism or involve someonewho does.
It is helpful if staff in other services likeswimming pools or leisure centres aretrained about autism.
We are looking at how well the autismtraining on the internet works.
31
People need the right support as soonas possible. We are looking at trainingabout autism for social workers andGPs so they can send you to the rightservices.
10. I want my family to get thehelp and support they need
When you find out you have autism,your carer should get an assessmentto see what support they need.
Local councils must make sure theirplans for carers include people withautism.
Carers will get information about theCarers’ Allowance and other benefitsthey can get.
32
11. Services understand how tosupport me when there arebig changes in my life.
Thinking about younger people
If you are under 25 years old you mayhave just 1 plan for your education,health and care based on your needs.
Schools must plan early before youmove to adult services. Councils canfind out what support you need beforeyou are 18 years old.
Young people with autism have newrights in colleges and training.
Councils will also have to plan foryoung people who do not go to collegeor have jobs.
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There is support for young people tolearn through college, apprenticeshipsor work experience.
Staff in colleges should get trainingabout autism.
Thinking about older people
Many older people with autism do nothave families to help them getservices. A new law would give themadvocacy support if they need helpwith this.
Local councils must think about olderpeople with autism when they planservices.
34
The Government will look at NationalAutistic Society information about howto support older people with autism intaking this work forward.
Thinking about other changes
Getting married, having children orlosing a job are all big changes in yourlife.
You need good support whensomething like this happens. If you donot get it, you might need support foryour mental health or other problems.
Local councils can plan services tosupport you before things go wrong.
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12. I want people to understandmy autism and know how tosupport my other needs.
Care services must understand theextra support people with autism needfor other problems.
Up to half of all people with a learningdisability also have autism.
More people with autism can havemore mental health problems thanother people and they need the rightsupport for this.
Some people with autism usebehaviour to communicate they areangry or upset.
36
Other people might need extrahealthcare.
People were treated really badly at ahospital called Winterbourne View.Many of them had autism.
The government has written a plan totry to stop this happening again.
The plan includes:
· people living in homes in thecommunity and not hospitals;
· better planning for each person’sneeds;
37
· better support if the person is veryangry or upset;
· new rules about holding people tostop them hurting themselves orother people.
13. I need the police, courts andother law services tounderstand about autism.
You need the right support if you are avictim, a witness or the police thinkyou were involved in a crime.
Police, prison staff and other lawservices should be trained aboutdisabilities like autism.
38
They need to understand you mighthave problems talking orunderstanding what they say.
If the police or courts know you haveautism they can make adjustments inhow they treat you.
They can decide to send you to healthor care services instead of going tocourt. This is called Liaison andDiversion.
Prisons will get better at finding outwho has autism and giving them theright support.
39
14. I want to be independent andmake the most of my skills andabilities.
If you meet the rules to get servicesyou should have more control overyour support.
One way to do this is to have apersonal budget to pay for the servicesor support you choose.
We are paying the National AutisticSociety to help more people withautism have a personal budget.
Schools and colleges can also help youlearn to be as independent as possible.
40
15. I want support to get andkeep a job.
Working is important for everyone. Ithelps you pay for the things you wantand be part of society.
Not many adults with autism have jobsbut we hope our plan will changethings.
The plan includes:
· training about autism foremployers and organisations thathelp people get jobs;
· training for staff in benefits officesabout autism and other disabilitiesyou cannot see;
41
· special employment advisors tosupport disabled people beforethey get a job and when they areworking.
The Department for Work and Pensionsis helping employers who are not surehow to employ people with disabilities(including autism).
We asked people with autism aboutgetting a job and how differentservices could support them better.
We will write a report about this for theAutism Programme Board.
42
Local councils must think about workwhen they plan services for peoplewith autism.
The Autism Innovation Fund could helpwith this.
There may be local schemes to helppeople with autism get a job.
43
Part 5 - What happens next
This paper tells you about the changesto our plans to help people follow thelaw on autism.
The actions it includes will help localcouncils, health services and otherorganisations in what they need to do.
We want everyone to think about howto make things easier for people withautism.
This will help you do the same thingsas everyone else because servicesunderstand your needs.
We will ask what people think aboutthese ideas and then write new rulesfor services later in 2014.
Credits
This paper has been designed andproduced for HM Government by theEasyRead service at Inspired ServicesPublishing Ltd. Ref ISL232/13.October 2014.
www.inspiredservices.org.uk
It meets the European EasyRead Standard.
It has been user-checked by theMaking It Easier Group of people withlearning disabilities.
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