We Can Dream

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We Can Dream!Ways o planning or the uture or young peoplewith autistic spectrum disorders


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AcknowledgementsWe are very grate ul to the young people

and their amilies who agreed to work withus. We could not have produced this bookletwithout them.

We are also very grate ul to the localauthorities and organisations who agreedto take part in this new area o work, namelyRedbridge and Waltham Forest LearningDisability Partnership, and the National

Autistic Society. We would especially like to

thank Sara Merriman, Transition Worker and

Razia Matharu, Resettlement Social Worker atRedbridge Social Services and Lesley Waughand Carol Povey rom the National AutisticSociety.

This booklet was written by Jill Davies,Christine Burke and Molly Mattingly, withsupport rom Justin Pearce-Neudor andLucy Smith.

ContentsWe Can Dream! - about the project 3

The young peoples pro les 4

Planning in advance 8

Bringing in people who know you best 1

Making it happen 14

Whats been the best thing about having a person centred plan? 16

Use ul in ormation 18


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We Can Dream! - about the project The Foundation or People with Learning Disabilities, in partnership with the NationalAutistic Society (NAS), and a number o local authorities, has supported a small group o young people with autistic spectrum disorders and their amilies to have a meaning ulli e a ter leaving school.

We know that with the right support young people with autistic spectrum disorders canexpress creative ideas, dreams and hopes or their uture. One way o doing this is touse person centred planning. Person centred planning is a way o planning all aspectso a persons li e. The person is at the centre o the planning process and with supportdecides who they would like to help them and who can help them make the planspossible. This approach is particularly use ul at transition because it gives young people

a chance to say what their hopes and dreams or the uture are.

Research evaluating person centred planning by the Foundation or People withLearning Disabilities and other partners (Robertson et al, 2005) showed that peoplewith autism were less likely to have a person centred plan. This was because some o the processes in this approach were not easy to use with people with autism. In thisproject we have worked out ways to support people with autism better through theperson centred process.

This booklet This booklet is or young people and their amilies, riends and supporters to read and talk about together. It is based on the stories o our young people. We hope it gives you goodideas about what to do when you leave ull-time education. It is not always easy to bring

about changes but with care ul planning, time and the right people to help, things canhappen.

Robertson, J., Emerson, E., Hatton, C., Elliott, J. et al (2005). The impact of person centred planning.Institute for Health Research: Lancaster University.


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The young peoples profles The our young people eatured here all took part in the project. Big changes happened orsome o them; others are still waiting or things to change. We hope their stories give youideas about how you may want to plan or change things when you leave school or college.

Where do you live?I live at home with my mother and brotherin Kent.

What do you do in the day? I go to a post 16 unit or pupils with autistic

spectrum disorders but will be leaving soonand want to start planning ahead or myuture.

What is important to you? My passion is music and I want to pursuea job working in the music industry or ina record shop. I would like to leave homeand live with riends in the near uture. I

want a normal li e doing normal things.

Name: MarcAge: 18

Its important I keep close contact withmy amily and some o my riends romschool, my routines and my daily activities.

What do you like doing?

Being with my riends, going out. I wantto go out more in the evenings andweekends when I leave home. Listening tomusic, gardening, cooking and shopping.

What dont you like doing? Bike riding and being in noisy places.


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Where do you live? I live with three other young people in ahouse with support in Essex. I moved therea ew months ago.

What do you do in the day?

I le t school last year and now I go to mylocal college, doing a li e skills course. I amalso doing a childcare course and spenttime in a primary school.

What is important to you? I want to keep t so I go swimming threetimes a week. I really like having my hairstyled every Thursday and having my nails

painted.

Name: MelanieAge: 19

What do you like doing? I like meeting up with old school riendsat a youth club every Thursday. I like beingwith small children and this is somethingId like to do a ter I leave college. I like beingindependent doing housework like the

washing and ironing and cleaning. I alsolike cooking Indian ood and watching lmswith my housemates. I meet up with mumand dad every Sunday.

What dont you like? I get scared and rightened o dogs. I alsodo not like insects so I need a lot o supporti I see them.


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Fionas Mum says:

Where do you live? Fiona lives with her amily in North EastLondon.

What do you do in the day? Fiona has a very structured week thatis made up o a range o activities shelikes to engage in. These include art andphotography classes and going to thehealth club where she is a member.

What is important to you? Having people around Fiona who know her

really well so that she does not get worriedabout things.

Name: FionaAge: 0

What do you like doing?Fiona is a keen photographer and artist. Sherecently sold a piece o her artwork when itwas displayed in a local art exhibition.

What dont you like doing?Fiona dislikes changes in her li e so it is reallyimportant to introduce new things verygradually.


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Where do you live? At home with amily in London. I live withmy mum, two sisters, brother, grandma andRover the dog.

What do you do in the day?I have two support workers who helpme do things at home such as makingmy lunch, tea and drinks. They help withdressing and other personal things such asshopping, going to the bank, taking Roverto the park, swimming and going to musicclass. My mum, sister or brother also takeme out and do lots o things that happenonce in a while, like going on holidays.

What is important to you?Living with my amily, having my own spaceto do my own thing, being active, learningnew things, good ood and drink. I also

like my mum to read to me and listening tomusic or relaxation.

Name: CrystalAge: 1

What do you like doing?Going to the park to run and walk,listening to music (Madonna) and storieson CDs and looking through catalogues.Exercise and relaxation is very importantto me, especially swimming, havingmassages, saunas and jacuzzis. I also watchinternational ootball games, like going oncar rides with mum and my sister, going toparties, listening to DJs and live bands ando course, going on holiday.

What dont you like doing?Staying home when my mum goesaway without me. Doing the laundry orhousehold work. Being in crowded, noisyshopping centres. Going on hospital visits,getting my blood pressure checked.


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Planning in advanceFrom working with Marc, Melanie, Fiona and Crystal we learned it was really important toplan well be ore you leave school or college. One young person was about to leave schooland no plan was in place. This made her and her parents eel very worried about what wasgoing to happen. For all the young people we used person centred planning.

What is person centred planning?

Person centred planning is a way o getting to know a person and helping them makeplans or all aspects li e. It is o ten used with adults with learning disabilities. The personis at the centre o the planning process and, with support, decides who they would like tohelp them to make the plans possible. This approach is particularly use ul during periods o

transition because it gives young people a voice to say what they want or their uture.

The purpose o person centred planning is to give the person an opportunity to think about what they want rom their li e now, and in the uture. The person is supported tomake their own decisions and have more control over their li e. There are a number o ways in which you can develop a person centred plan and there are numerous tools tosupport people to think about what a positive uture will look like, and the steps to makingit happen.

The key questions to think about in person centred planning are:

Who are the important people in a persons li e? These are the individuals the person wants to be part o developing their person centredplan and who can help them make things happen. These are the committed people in thepersons li e who know and care about them.

What are the persons strengths (or gi ts)? By nding out what the person is really good at and what people like about the person, it

can help people think about the kinds o employment, educational courses, career paths,activities or uture housing options the person may wish to pursue.

What is important to the person now and in the uture (or dreams)? This helps people think about what is important to them, and what they want romothers to make sure those important things stay the same. It may also highlight what theperson is not getting so that plans can be made to ensure things start to happen in the

uture. Learning about what is important to people can also help others to understand thepersons pre erences. Similarly, asking what a persons dreams are can be a creative way o providing ideas o what to pursue in the uture.


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What are the supports the person may need to make things happen to get the uturethey want? Learning about ther persons gi ts and dreams will help people to identi y key areas inwhich support is needed. Family members in particular nd this use ul as it means theconversations can explore ways to overcome obstacles. For example, i a person nds

changes in an established routine hard to accept, this can be written into a detailed plan tobe ollowed by all the people supporting the person.

What do we need to do? This is also called action planning. This is a way to ensure that those things the personwants to happen, to make a positive uture, actually happen. This would include identi yingthe people who are responsible or implementing the plan with the person.

The planning process and people with autism

In order to make the person centred planning process meaning ul or people with autisticspectrum disorders we have incorporated the SPELL approach by the National AutisticSociety. That means the process has a clear structure (there are key questions to ask); it

ocuses on the persons p ositive attributes (their gi ts and strengths); there is an empatheticapproach ( or example, using the means o communication that the person understandsbest); low arousal (see below)and links with the most important people and things in thepersons li e.

Adapt your language It is generally understood that many people with autistic spectrum disorders nd it di cultto understand abstract language. The language used in person centred approaches tendsto use words such as dreams, wishes and gi ts.

We ound that using questions such as What do you think you are good at?, What thingsdo you like to do?, What things make you laugh? and What would you like to do when youleave school? work much better.

Make sure planning meetings are not too busy (low arousal) The person centred planning process is generally seen as being autism riendly asapproaches tend to use lots o visual aids ( or example, writing down on large sheets o paper the persons strengths or gi ts, their dreams or plans or the uture) so this really helpsthe persons understanding o what is happening. However, or some people too manyvisual aides can be over-stimulating. It is also important to think about how many people toinvite to the planning meetings - too many people present can be stress ul or some.

Recognise and value each persons special interestsPro essionals and services o ten label people with autism as having obsessions rather than talentsand gi ts. I we ocus on these talents they can be used to support the person in a positive way.


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Melanies Plan

For Melanies plan, the rst thing wedid was to list all the really great things(sometimes called gi ts) about Melanie,

as these gave her ideas about what shewants to do in li e. We then asked her andher amily to think about what she wouldreally like to do in her li e (sometimes calleddreams). In order to make sure Melanieis sa e and supported in the best way, wealso asked what the nightmares are (orthings that could go wrong or what youdread about the uture). This is importantas it helps to introduce a balance betweenindependence and health and sa ety. Forexample, in Melanies case she could notlive without 24 hour support, but needsher own space away rom everybody todo the things she loves to do on her own. This helped in the planning or her uturehousing.

Melanie lived away rom her home town.She wanted to move back to her local areabecause she wanted to keep in touch with

her old school riends and attend the localcollege where they go. She was also keen tocontinue attending the clubs and activitiesshe did a ter school and during school/ college holidays.

A ter getting Melanies views, her circle o support (see pages 13 and 14) made anaction plan that listed her goals and whatactions the circle o support would do inthe short-term (three months) and in thelong-term (six months). Each person whoattended the planning session agreed to docertain tasks to help her move orward withthe plan. For example, her mother agreed totake Melanie to visit the college she wantedto go to. Her transition worker agreed tomake a re erral to the housing social worker.

Now, Melanie has le t school and studiesat the local college and has moved into ahouse with three other young people. Shehas managed to achieve important goals- to go swimming regularly and lose weight.Melanie is delighted that her plan has cometrue.


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Crystals Plan

Crystal did not like going to schoolbecause she was bored. During her lastyear at school, she was o ered a day centre

as the only option or her uture supports.Crystals mum, Rose, did not want Crystalgoing to a day centre.

Rose wanted Crystal to have a more ul lledli e. Rose attended a course on Familiesand Person Centred Transition Planningprovided by the Foundation or People withLearning Disabilities and Brent Council. Rose

and Crystal learned about person centredplanning and how this could help Crystaldevelop a positive plan or the uture. Theywere assisted to develop an individual wayo providing support to Crystal so she wasin control.

Now, Crystal receives money rom DirectPayments and the Independent Living Fundgrant. She uses her money to hire personal

assistants to support her in variousactivities at home and in the community.At school Crystal did not use many words

to let people know what she wanted: sheused her behaviour. Since leaving schoolshe is using more words to let peopleknow what she wants. This spring Crystaltook her rst holiday with her amily toSpain. Rose has been infuenced by theway person centred planning helped herand Crystal stay in control o her uture.Rose can now spend more time providingsupport to other amily members andCrystal can do the things that she enjoys.

Fionas Plan

Fiona should have le t school last yearbut through her person centred plan itwas agreed that she would stay at school

or another two terms. This was so thather circle o support had time to prepareahead o her leaving school they hadto plan a weekly schedule based onFionas interests and strengths as she wasnot going to use the learning disabilityservices provided by her local authority.It also gave Fiona time to get used tothe new people recruited to support her(paid through her sel -directed supportpackage) as they spent time with her atschool.


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How to get a person centred plan

I you live in England you should have a review and begin your transition planning in yearnine at school. Many schools in England are adopting the Person Centred Review process,adapted rom the Essential Li estyle Planning process (Smull and Sanderson, 2005). The

outcome is or the young person to have greater involvement in their transition review andto be at the centre o developing a plan or their transition rom school to adulthood. For

urther in ormation go to www.valuingpeople.gov.uk

In Wales too you will start planning or the uture in year nine at school. A careers adviserrom Careers Wales will get involved. In Northern Ireland a Transition Planning Coordinator

may attend your planning meetings. In Scotland you can do a person centred plan as parto your Future Needs Assessment.

Here are some things you may wish to do:

Find out i your local authority has a person centred planning co-ordinator oracilitator who could help you.

Remember your person centred plan includes all the things you do in your li eincluding what you need to keep you healthy.

Think about how you would like to record your ideas. Would you like to drawor write on big pieces o paper? Do you want to use photos? Do you wantto make a book, CD or DVD?

Make sure that people sign up to your plan and do the things that they saythey will do.

Smull, M.W. and Sanderson, H. (2005). Essential lifestyle planning for everyone.Stockport: The Learning Community.


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Bringing in people who know you best

It is so much easier to plan i you can do it with other people, usually those who knowyou best. These could be your parents and other members o your amily, teachers andtutors, riends and other people you are in contact with. Some people have an advocate- this is a person who makes sure the person going through the planning process has avoice. Advocates are usually not related to the person and may belong to an advocacyorganisation. To nd out i there is an advocacy organisation in your local area, contact theadvocacy support exchange (ARX) at www.advocacyresource.net

Circle o support

One o the most common ways o developing a person centred plan is to bring togethera circle o support. A circle o support is a group o people who meet regularly to helpsomebody achieve what they would like to do in their li e, or example, get a job, go onholiday or take part in a leisure activity.

It is use ul to work on the relationship map (see page 14) as the rst step in the process. Think about whether you would like to have a circle o support, who you would invite andwhere you would meet. You should decide where it will be held, or example, in your home,a restaurant or a ca e. Circle members sign up to any decisions made during the circle.

Make sure everyone is com ortable in your meetings, including yoursel , and that everyoneenjoys themselves.

Melanie had a small circle o support tohelp her think about the uture. Memberswere her mother, ather, transition workerand key worker at the home she lived in.A ter the rst ew meetings the housingsocial worker joined the circle o support

as moving house was something Melaniewanted to do.

Marc met with his circle at school or atthe pub. He is still at school so the circlecontinue to meet regularly to make sure theplans are based around Marcs wishes.

Fiona and her amily have a circle o support made up o her social worker andschool sta . The circle o support identi edher strengths and passions, along withwhat makes her eel sa e and what couldbe the nightmares i she did not receive

the right kind o support. By having a plandeveloped by those who knew her thebest, it was agreed that she would remainat school or another two terms so theycould plan her week in preparation orleaving school. It also gave the new sta time to begin to get to know Fiona in anenvironment that she elt sa e in.


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How to get a circle o support

Sit down with your supporter (this could be a parent, teacher or social worker) andll in the relationship map on this page. You need to list your amily members,

close riends and supporters and other important people in your li e.

From the list think o the people you would like to support you. Set a date, time and place to hold your rst circle o support meeting. This could be

in your house, at school or even in the ca e. Ask your supporter to help you plan the rst meeting. You need to think about who

will lead the meeting with you. In the rst ew meetings you may want to ask the questions on pages 8 and 9 as this

will help you start thinking about the uture.

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Making it happenOnce you have thought about what you want to do and you have people to supportyou, it is time to make things happen. When you leave school or college, some o you willneed extra help to make the most o your li e. I you have been assessed by your localauthority/social services as needing a care service, you may be able to get a Direct Paymentor an individual budget. Not everyone wants a Direct Payment as they may pre er to haveservices provided by their local authority. I you have a social worker or care manager, invitethem to your circle when needed so that they can make things happen (this is usuallywhen unding is required).

Sel -directed support/individual budgets

The Government is suggesting a new system o social care called sel -directed support. Inthis system people will be in control o their support. They can be given money to pay orthe support o their own choice. One o the existing models o ering this approach is calledIn Control.

This helps people to get the support they need to do the things that are important tothem. Some get Direct Payments or a resource allocation und to pay or support instead o using a day service or going to college. Others use it to pay or sta to support them to livein their own home or to have a social li e. This could mean employing a personal assistant

to support someone going to a nightclub or on a short break. This is pre erred by somepeople because personal assistants employed by the local council are o ten bound by strictworking hours which do not allow or such fexibility. Some people do not want a DirectPayment and pre er to use the services and support provided by their local authority.

Some young people will be assessed by social services as not needing a care service. I this is the case, it is worth asking members o your circle to support you to make thingshappen. For example, i you want to work perhaps they may have contacts who can o erwork experience or in ormation about getting a job. They may also be able to support you

in developing your social li e i this is something you want to do. For example, i a circlemember has the same interests as you, perhaps you could arrange to meet up, or emaileach other.


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Fiona used the In Control model to planher days a ter leaving school. Havingdeveloped a very detailed person centredplan, her social worker took it to the socialservices panel because she needed money

to make things happen. She was allocateda set amount o money to continue tosupport her at school or an extra two termsand then to ensure she had an individualweekly schedule on leaving school with ateam o personal assistants. The undingmeans Fiona can take part in variousactivities. It includes annual membership

or her and her personal assistants to a local

health club. With support, Fiona displayedsome o her artwork at a local exhibition.

How to get sel -directed support/individual budgets

Here are some things to do, i you think you would like sel -directed support:

Talk to your riends and amily about what you would like to do and why you wantsel -directed support.

Ask your social worker about whether you can have sel -directed support. I you donot have a social worker, contact social services and ask i someone can talk toyou about them.

I you are able to have sel -directed support, the social worker will tell you how muchyou can have and you will agree how you will spend the money. You will have aspecial bank account.

I you are able to have sel -directed support, decide whether you and your amilywant to deal with the money and pay the personal assistants or carers or whetheryou would like an agency to do that or you. (You can still appoint yourown sta i you like).

Fionas mother manages the unding andemploys the personal assistants hersel .

Marcs passion is music and he wants topursue a job working in the music industry

or in a record shop. Members o his circlehave been supporting him to think aboutthe best way to reach his goal. He wantsto move out o his amily home and into afat with a riend rom school. Marc and his

amily are currently being supported by hiscircle to challenge his Local Authority. Thisis because they are not supporting Marcsplans or the uture.

Crystal has Direct Payments and anIndependent Living Fund grant (ILF seepage 19) which she uses to hire personalassistants to support her in various activitiesat home and in the community. Her mothermanages the money on her behal andshe has arranged with a local agency topay the personal assistants. Rose also hasan accountant to keep Crystals nances inorder.Fionas artwork


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Whats been the best thing about havinga person centred plan?

Getting a Direct Payment and unding rom the IndependentLiving Fund. I can choose who works with me and plan myday according to how I eel. I can choose the hours I wantsupport or.

Going to the pub or lunch and talking about my li e.Hope ully, getting my own fat to live in when I leave school.Doing more things away rom home.

Fionas mum states that i Fiona had not been given theopportunity to have a person centred plan she would be athome doing nothing. The local services were not suitable orFiona so having an individual plan and receiving the money tosupport it has made a huge di erence to the quality o her li e.

It was lovely, because people listened to me and now I live ina beauti ul house with three riends.


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Use ul in ormation Person centred planning

You can download My Personal Planning Book by the Foundation or People withLearning Disabilities at www.learningdisabilities.org.uk

There is a workbook, Listen to Me, which you can get rom the Valuing People websiteat www.valuingpeople.gov.uk/dynamic/valuingpeople137.jsp

There is a website designed, planned and run by people with learning disabilities tohelp others stay in control o their lives at www.handso myplan.co.uk

See the Trans-active website or help with making plans atwww.trans-active.org.uk/teenz/index.htm

There is a book called, Building Community Through Circles o Friends written byChristine Burke in 2006 which you can buy athttp://www.learningdisabilities.org.uk

Sel -directed support

You can download An easy guide to Direct Payments: giving you the choice and controlrom the Department o Health website at

www.dh.gov.uk/en/Policyandguidance/Organisationpolicy/Financeandplanning/ Directpayments/index.htm

You can download An easy guide to Direct Payments in Scotland: giving you choiceand control over your social work services rom the Scottish Consortium or LearningDisability website at

www.scld.org.uk/data/fle/fle_78_An_easy_guide_to_direct_payments.pd

Getting in Control: People with learning disabilities, their amilies, individual budgetsand sel -directed support is a DVD or amilies. You can order it atwww.h t.org.uk


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In Control

In Control started work in 2003 to change the social care system in England. The oldsystem did not put people in control o their own support or li e.

In Control designed a new system - Sel -Directed Support. The Government now wantsall local authorities to change their systems to Sel -Directed Support. You can fnd morein ormation atwww.in-control.org.uk/site/INCO/Templates/Home.aspx?pageid=1&cc=GB

The Independent Living Fund (ILF)

The Independent Living Fund is open to applications rom severely disabled peoplewho meet its eligibility criteria and are permanent residents o the United Kingdom. The Independent Living Funds were set up as a national resource dedicated to thefnancial support o disabled people to enable them to choose to live in the communityrather than in residential care. You can fnd more in ormation athttp://www.il .org.uk/about_the_il /index.html

Personalisation

You can order or download a copy o Personalisation: a rough guide rom the SocialCare Institute or Excellence at www.scie.org.uk

Valuing people now. (2009) Department o Health. These are the English governmentspriorities or people with learning disabilities over the next three years. There is a large

ocus on the personalisation agenda. It can be accessed athttp://www.dh.gov.uk/en/Consultations/LiveConsultations/DH_081014

Documents

We Can Dream