0:00:02 > 0:00:07This programme contains some strong language.
0:00:07 > 0:00:09'I'm Rosa Monckton.
0:00:09 > 0:00:13'For the past decade I've been campaigning for people with disabilities.'
0:00:13 > 0:00:16- This is a 10. It just depends on shape.- Mummy!
0:00:16 > 0:00:21'This is my daughter, Domenica, who has Down's Syndrome.'
0:00:21 > 0:00:24- What sort of size are you? Quite small.- Ten.
0:00:24 > 0:00:25'She's about to turn 16.'
0:00:25 > 0:00:29If you're taking me to the Queen!
0:00:29 > 0:00:31'It's a milestone for any young person
0:00:31 > 0:00:33'but if they have learning disabilities,
0:00:33 > 0:00:36'they have even more challenges ahead.'
0:00:36 > 0:00:38We're back on air!
0:00:38 > 0:00:42I try to have fun, but it's not that fun.
0:00:42 > 0:00:47For those who are more able, how independent can they really be?
0:00:47 > 0:00:51- Are you good with money? Is it something you could do alone?- No.
0:00:51 > 0:00:55How do they find homes that are safe and secure?
0:00:57 > 0:00:59Bad people.
0:00:59 > 0:01:04It just scared him to death and that just finished Richard off.
0:01:04 > 0:01:08And as a mother, is it ever really possible to let go?
0:01:10 > 0:01:14It's that constant 24 hour worry, and it's terrifying.
0:01:14 > 0:01:17What's going to happen to Jess?
0:01:17 > 0:01:20- All right, take it out and put it in your hand.- Mum!
0:01:20 > 0:01:24It's not as easy as people think to just let go of your children.
0:01:24 > 0:01:26Oh, Mum!
0:01:40 > 0:01:44- "Solo, Domenica Lawson."- Oh, solo. - I know.
0:01:44 > 0:01:48"Choreography, Domenica Lawson." Are you impressed?
0:01:48 > 0:01:50I'm amazed.
0:01:50 > 0:01:52CHEERING
0:01:54 > 0:01:58Since she was a young girl, Domenica has had one great love in her life.
0:02:00 > 0:02:02Dance.
0:02:08 > 0:02:12Tonight, she's appearing on stage at her annual school show
0:02:12 > 0:02:14and we've come to support her.
0:02:14 > 0:02:19She's the only performer with a learning disability on the stage
0:02:19 > 0:02:22and she's just about keeping in step.
0:02:28 > 0:02:33Like any parent, I'm always proud to see my daughter on the stage.
0:02:33 > 0:02:36She loves to dance but I do remember
0:02:36 > 0:02:38shortly after she was born
0:02:38 > 0:02:42being told she may never walk or even sit up.
0:02:44 > 0:02:47You were so good, darling. Were you talking to yourself?
0:02:47 > 0:02:50- Were you telling yourself what to do?- I was kind of nervous.
0:02:50 > 0:02:54But you were good. You didn't look nervous. It was fantastic.
0:02:54 > 0:02:56Thank you, Mummy.
0:02:56 > 0:03:00'For Domenica it's a rare pleasure to appear as an equal
0:03:00 > 0:03:02'with other young people of her age.'
0:03:05 > 0:03:07Here, doggy.
0:03:10 > 0:03:14My stage name - Mega Awesome.
0:03:16 > 0:03:21I really can hardly believe that Domenica is about to be 16.
0:03:25 > 0:03:28On the surface, she seems to be very like her peers,
0:03:28 > 0:03:31but from now on her life is going to be very, very different
0:03:31 > 0:03:36and as her mother, I know how very vulnerable she is.
0:03:45 > 0:03:48We have to plan ahead for when we're dead.
0:03:50 > 0:03:54And now is the time I have to seriously start thinking
0:03:54 > 0:03:55about her future.
0:03:55 > 0:03:59About where she goes, where she ends up and what she does
0:03:59 > 0:04:01and how to protect her.
0:04:02 > 0:04:06'It fills me with fear of the future.
0:04:06 > 0:04:08'It's a very difficult moment.'
0:04:14 > 0:04:18Welcome to our village. Our shop.
0:04:18 > 0:04:21Our school. Our pub.
0:04:21 > 0:04:24This is 17-year-old Jack.
0:04:24 > 0:04:26Like Domenica, he has Down's Syndrome
0:04:26 > 0:04:30and has lived most of his life in a tiny community.
0:04:30 > 0:04:32I've lived here for ages.
0:04:34 > 0:04:38I try to have fun, but it's not that fun.
0:04:39 > 0:04:42It's always been this way.
0:04:44 > 0:04:46Done!
0:04:46 > 0:04:49This place, I don't know, it's really boring.
0:04:51 > 0:04:54Boring right now. That's how I feel in my life.
0:05:07 > 0:05:11'I've come to Devon to meet Jack and his parents, Ronny and Rod,
0:05:11 > 0:05:14'to see how they're preparing for Jack's future.'
0:05:14 > 0:05:18- I'm Rod.- Hi Rod, Rosa. Very nice to meet you.- Nice to meet you too.
0:05:18 > 0:05:20Oh, nice and warm in here.
0:05:20 > 0:05:22'Jack's got two sisters
0:05:22 > 0:05:25'who are already leading normal teenage lives.'
0:05:25 > 0:05:27Good morning, everyone.
0:05:27 > 0:05:30Jack, do you want to come and meet Rosa?
0:05:30 > 0:05:34- Slobbery kiss, Rosa.- Hello, Rosa. - Hi Jack. Very nice to meet you.
0:05:34 > 0:05:38- Yes, very nice to meet you. - How was school?- Yes, really amazing.
0:05:38 > 0:05:43Good. So, once you've left school and taken all your exams,
0:05:43 > 0:05:46what do you want to be and where do you want to live?
0:05:46 > 0:05:50- I want to live in Las Vegas. - Las Vegas!- Yeah.
0:05:50 > 0:05:52Why do you want to go there?
0:05:52 > 0:05:54It's just, erm...
0:05:54 > 0:05:58I'm not sure. It's a great place.
0:05:58 > 0:06:02And I would have like great jobs in Las Vegas
0:06:02 > 0:06:06like being a writer, lawyer, photographer.
0:06:06 > 0:06:12Yeah, I just want to be famous. That's what I want to be.
0:06:12 > 0:06:14Jack, why do you want to be famous?
0:06:14 > 0:06:18I just want to be. I just want my dreams to come true.
0:06:18 > 0:06:22Live in Las Vegas and then be famous.
0:06:25 > 0:06:28He's just now very aware of his condition
0:06:28 > 0:06:32but he wants to be just like everybody else.
0:06:32 > 0:06:36The people of his age are all talking about boyfriends,
0:06:36 > 0:06:39girlfriends, going out clubbing,
0:06:39 > 0:06:43having a great time, you know, all the normal things.
0:06:43 > 0:06:46But he does not... he can't join in.
0:06:46 > 0:06:50And one of the difficulties with Jack is his ambitions,
0:06:50 > 0:06:54so what we're trying to achieve at the moment,
0:06:54 > 0:06:59is working out which way he should go in the future.
0:06:59 > 0:07:00What does that involve?
0:07:00 > 0:07:04Well, finding Jack a job
0:07:04 > 0:07:07that will really suit him and make him happy.
0:07:07 > 0:07:10Not something because they've had to fit in.
0:07:10 > 0:07:13So realistically, what would that be?
0:07:13 > 0:07:16Erm, something that Jack is capable of doing,
0:07:16 > 0:07:20so he loves his photography so, practically,
0:07:20 > 0:07:25if he had dedicated teachers, he could learn to do photography.
0:07:25 > 0:07:29- I know you're saying realistically...- Let's be realistic.
0:07:29 > 0:07:32Will Jack take the photos that appear on the front of The Times?
0:07:32 > 0:07:36I mean, I can't see anybody paying him
0:07:36 > 0:07:41to do what he really, really wants to do, you know.
0:07:41 > 0:07:42How do you know?
0:07:42 > 0:07:46I don't but I'm just saying, realistically.
0:07:46 > 0:07:48I never say never.
0:07:48 > 0:07:52If we don't have those ambitions for our children,
0:07:52 > 0:07:54then no-one else is going to.
0:07:56 > 0:07:59Yes, I got it in!
0:07:59 > 0:08:04'Ronny is like every mother of a disabled child. She wants the absolute best for him.
0:08:04 > 0:08:07'She'll fight tooth and nail until her dying day to give him
0:08:07 > 0:08:10'as independent a life as it's possible for him to have.'
0:08:10 > 0:08:13- Thank you.- Bye. Have a safe journey. - Yes, I will. Bye-bye.
0:08:14 > 0:08:19One of the things that you have to do as a parent
0:08:19 > 0:08:24is to work out exactly WHAT they are capable of.
0:08:24 > 0:08:27- That's it! - And how much can we plan for them
0:08:27 > 0:08:31within the limitations of what's possible?
0:08:34 > 0:08:38Domenica's leaving school with barely any qualifications.
0:08:38 > 0:08:40What's happened to your thing?
0:08:40 > 0:08:45'And I'm wondering what kind of work it's realistic for her to do.'
0:08:45 > 0:08:46Have you got your lip salve?
0:08:46 > 0:08:48It's upstairs.
0:08:48 > 0:08:52Run and get it and let see if I can find another cardigan, that's too small.
0:08:56 > 0:08:58'For Domenica's work experience,
0:08:58 > 0:08:59'I've arranged for her to spend a week
0:08:59 > 0:09:01'at a hotel close to our home,
0:09:01 > 0:09:04'staffed by people with learning disabilities.'
0:09:04 > 0:09:08Are you still off to see the wizard? Good morning.
0:09:08 > 0:09:12Domenica has come here to learn how to work in a hotel.
0:09:12 > 0:09:15How to wait at tables. How to wash up.
0:09:15 > 0:09:18How to clear away and how to be part of a team.
0:09:18 > 0:09:22Apart from anything else, what it will teach her is life skills.
0:09:22 > 0:09:26- Have you got a question?- Yeah. - Go on, then.
0:09:26 > 0:09:29Er, in the restaurant, what do you do if you serve them?
0:09:29 > 0:09:30When you serve them?
0:09:30 > 0:09:32I don't want to show her her limitations.
0:09:32 > 0:09:35I think that's the wrong way of looking at it,
0:09:35 > 0:09:37but to manage her expectations.
0:09:39 > 0:09:43Hello, ma'am. What are you going to have?
0:09:43 > 0:09:45Say - "Are you ready to order?"
0:09:45 > 0:09:47Ready to order.
0:09:47 > 0:09:50Yes, I'll have the...
0:09:50 > 0:09:53Prawn cocktail.
0:09:53 > 0:09:57- OK.- If you're struggling with what to write, I'll help you.
0:09:57 > 0:09:59Thank you. I can't.
0:09:59 > 0:10:03Less than one in five people with learning disabilities
0:10:03 > 0:10:07manage to get a job, and most of those are part-time or unpaid.
0:10:07 > 0:10:10- Can you come here? - Yes, I'm right here with you.
0:10:10 > 0:10:12- Come here. - Yeah, I'm coming.
0:10:12 > 0:10:14For Domenica, it's a real challenge
0:10:14 > 0:10:17to even think of serving as a waitress.
0:10:19 > 0:10:22- Stand that side.- Are you ready to order?
0:10:22 > 0:10:24Say, "What would you like?"
0:10:24 > 0:10:25What would you like?
0:10:25 > 0:10:30- I think I'll have the lasagne. - The prawn cocktail, please.
0:10:33 > 0:10:35- Here. - Lovely, thank you very much.
0:10:35 > 0:10:41No, Domenica. Sorry. The lady in the window. That's it.
0:10:41 > 0:10:42Here.
0:10:42 > 0:10:46I know that all she wants to do is be a star on the West End stage.
0:10:46 > 0:10:50For her, and it's wonderful, the sky is the limit.
0:10:50 > 0:10:53She thinks she's capable of doing absolutely anything at all,
0:10:53 > 0:10:55and I love that part of her
0:10:55 > 0:10:58but equally I don't want her to become a disappointed adult.
0:10:58 > 0:11:01- Where put it? - On the table. Very, very carefully.
0:11:01 > 0:11:03And if we can give her some basic skills,
0:11:03 > 0:11:06who knows, down the line she may be able to use them.
0:11:06 > 0:11:10And perhaps getting a job in a cafe or in a restaurant,
0:11:10 > 0:11:13and to give her some sense of self-worth, you know,
0:11:13 > 0:11:17to get out of bed and feel she's being a useful member of society.
0:11:17 > 0:11:21- I did it! - Well done. See, you can do it.
0:11:21 > 0:11:23I can't believe it. High five.
0:11:35 > 0:11:37I know that it has to be done.
0:11:37 > 0:11:43I know that I have to let my daughter go and be independent
0:11:43 > 0:11:47but it makes me very fearful, very fearful.
0:11:47 > 0:11:51You have to keep going because it has to be the right thing
0:11:51 > 0:11:53for the child, to cut the umbilical cord.
0:11:53 > 0:11:57But I just wish that there was more out there to protect them.
0:12:01 > 0:12:05As a campaigner, I hear all too often of the difficulties
0:12:05 > 0:12:08young people face when they attempt to move out of the family home.
0:12:08 > 0:12:11- I'll be your lackey.- Yes!
0:12:13 > 0:12:15Richard has Down's Syndrome.
0:12:15 > 0:12:20Concentrate on your breakfast. I don't like my sausages burnt.
0:12:20 > 0:12:23He is now back living with his parents
0:12:23 > 0:12:26after an attempt at living on his own went badly wrong.
0:12:26 > 0:12:30He's very artistic. That's his breakfast.
0:12:30 > 0:12:34Six years ago, Richard moved in to a flat on his own,
0:12:34 > 0:12:36rented privately by his mother, Dawn.
0:12:36 > 0:12:39In the daytime he went to an activity centre,
0:12:39 > 0:12:44in the evenings and overnight, he was supported by carers provided by the local authority.
0:12:44 > 0:12:48In total, Richard had 16 hours of support every day.
0:12:51 > 0:12:55He was really excited, really excited.
0:12:55 > 0:12:57Couldn't contain him, really.
0:12:57 > 0:13:01He was just wanting to get there. He thought it was absolutely fantastic
0:13:01 > 0:13:04to have his own key, move into his own flat.
0:13:04 > 0:13:07- Have his own space.- Yes.
0:13:07 > 0:13:11The flat is just a few minutes' walk from the family home.
0:13:11 > 0:13:14- It was like the moving on.- Yes.
0:13:14 > 0:13:18The next steps. But the next steps didn't work.
0:13:18 > 0:13:23Almost straight away, things started to go wrong,
0:13:23 > 0:13:27and Richard soon had problems with his new neighbours.
0:13:27 > 0:13:29So, here we are at the flat
0:13:29 > 0:13:32and the one just over there was Richard's flat.
0:13:32 > 0:13:34- That one. - Which one? To the left of the door?
0:13:34 > 0:13:36With the pipe going up.
0:13:36 > 0:13:39This is what we thought was Richard's lifetime home
0:13:39 > 0:13:41and it turned out not to be.
0:13:41 > 0:13:43And it just brings back a lot of anger.
0:13:43 > 0:13:45The upset, the stress we had,
0:13:45 > 0:13:48it just brings a whole lot of bad memories.
0:13:49 > 0:13:52You wanted to live there on your own, didn't you?
0:13:52 > 0:13:54- Yes.- And then what went wrong?
0:13:57 > 0:13:59The bad people.
0:14:00 > 0:14:01They're silly.
0:14:01 > 0:14:03They were silly.
0:14:05 > 0:14:07Naughty.
0:14:07 > 0:14:08Did they swear at you?
0:14:08 > 0:14:11- Yeah.- Use the F word?
0:14:11 > 0:14:13Yeah.
0:14:13 > 0:14:16And what else did they do?
0:14:16 > 0:14:17Er...
0:14:20 > 0:14:21Come in.
0:14:21 > 0:14:24- They knocked your door, didn't they? - Yeah.
0:14:24 > 0:14:26Perhaps shouted at you through your door.
0:14:26 > 0:14:29Yes, they did.
0:14:29 > 0:14:32Did they come when the supporters were there
0:14:32 > 0:14:36- or did they come when you were on your own?- On my own.
0:14:36 > 0:14:38- When you were on your own.- Yeah.
0:14:38 > 0:14:40And you can't express yourself, can you, Richard?
0:14:40 > 0:14:45You have a job, if people upset you, you get very upset, don't you?
0:14:45 > 0:14:47- Yeah.- You get very upset, where, I suppose,
0:14:47 > 0:14:51you and I'd perhaps have it out and sort it out.
0:14:51 > 0:14:55And he was very upset and he started pulling post out of their post box,
0:14:55 > 0:14:58- didn't you, and hiding it? - Yes.
0:14:58 > 0:15:02On one occasion he wrote his name in felt tip on their front door.
0:15:02 > 0:15:05It just didn't work, no.
0:15:05 > 0:15:09And, the tipping point was the last weekend, which was at the flat.
0:15:09 > 0:15:11- Yep. - He had abusive phone calls.
0:15:11 > 0:15:16His electricity was switched on and off several times throughout the evening.
0:15:16 > 0:15:20He had someone spit on his front door
0:15:20 > 0:15:24and it just scared him to death.
0:15:24 > 0:15:27- Mm. - And that just finished Richard off.
0:15:27 > 0:15:30- Is it a bad memory for you?- Yes.
0:15:33 > 0:15:36It is.
0:15:36 > 0:15:39Look at you. Completely obsessed with Dr Who.
0:15:39 > 0:15:42Exterminate!
0:15:46 > 0:15:51'Richard clearly struggled living on his own, even with lots of support.'
0:15:51 > 0:15:53Yeah, bye.
0:15:53 > 0:15:57'Dawn has to start planning all over again for his future.'
0:15:59 > 0:16:04I know I've got to think about it but it's not something I relish.
0:16:04 > 0:16:07Not something we're looking forward to.
0:16:07 > 0:16:10- But actually you have to. - I have to.
0:16:10 > 0:16:14It's very hard cos I do worry what will happen.
0:16:14 > 0:16:16Particularly after the experience you've had,
0:16:16 > 0:16:20- you had a big package of care, and still it didn't work. - It still failed.
0:16:20 > 0:16:23And do you think you'd go and live on your own again?
0:16:25 > 0:16:27Er...
0:16:27 > 0:16:31- No.- No. No.
0:16:31 > 0:16:37There was one older carer who said to me once, she said,
0:16:37 > 0:16:40in some ways I hope my son dies before me
0:16:40 > 0:16:43because then I know everything will be all right.
0:16:43 > 0:16:45I've heard that many times, too.
0:16:45 > 0:16:49Because, you know, I dread what could happen to him.
0:16:49 > 0:16:50I want to stay here.
0:16:50 > 0:16:53You'll stay here, yeah.
0:16:53 > 0:16:56- Thank you very much. - Erm, yes.
0:16:56 > 0:16:58'They had all the care in place.
0:16:58 > 0:17:00'As much as is possible, a huge care package,
0:17:00 > 0:17:04'but there are so many people out there'
0:17:04 > 0:17:07who don't actually want people like Richard or Domenica
0:17:07 > 0:17:10living next to them out in the community.
0:17:10 > 0:17:12- OK.- Bye. See ya.- Bye.
0:17:12 > 0:17:15Imagine if Richard had been in that flat in 20 years' time
0:17:15 > 0:17:17and then there's no Dawn around.
0:17:17 > 0:17:20Who would have looked after him? Who would have picked up the pieces?
0:17:20 > 0:17:24Where would he have gone? No home to go back to.
0:17:24 > 0:17:26You know, it is the recurring nightmare
0:17:26 > 0:17:29for parents with children with learning disabilities.
0:17:32 > 0:17:34And as soon as this is finished, you're on.
0:17:34 > 0:17:36Go on. Go for it.
0:17:36 > 0:17:42This is Jack live, radio station at Soundart FM.
0:17:42 > 0:17:44- Here we are.- Brilliant.
0:17:44 > 0:17:48In Devon, Jack's got a placement at a community radio station,
0:17:48 > 0:17:49organised by his mother, Ronny.
0:17:49 > 0:17:51So, what's your first track?
0:17:51 > 0:17:56My first track's Michael Jackson, She's Out Of My Life.
0:17:57 > 0:17:59There you go. Now you take it easy for three minutes!
0:18:03 > 0:18:07'Round the corner from Jack's house is a place where he could live
0:18:07 > 0:18:09'when Ronny feels he's ready to leave home.'
0:18:09 > 0:18:12This is the start of it. You see that's quite...
0:18:12 > 0:18:14Both sides of the road?
0:18:14 > 0:18:17No, just one side. You just live in the village.
0:18:17 > 0:18:21It's a community for young adults with learning disabilities,
0:18:21 > 0:18:24even though it's just five minutes from her home,
0:18:24 > 0:18:26Ronny has not yet had a proper look inside.
0:18:26 > 0:18:30- Thank you very much. And how many of you live in here?- Er, four of us.
0:18:30 > 0:18:33Four of you, yes. Hello. Hello. I'm Rosa, who are you?
0:18:33 > 0:18:36- Yvette.- Hello, Yvette. How are you? - OK.
0:18:36 > 0:18:39- And do you live in this house as well?- Yeah.
0:18:39 > 0:18:43- And do you like living here?- No! - No?!
0:18:46 > 0:18:48It's OK really, here.
0:18:48 > 0:18:50Good, I'm pleased to hear that.
0:18:50 > 0:18:52- I like my red wine.- Oh, do you?
0:18:52 > 0:18:56- Will you invite me to the next party you have here, please?- Yes.
0:18:56 > 0:18:58Thank you very much.
0:18:58 > 0:19:01'It costs £800 a week to stay here,
0:19:01 > 0:19:04'with places funded by local authorities.'
0:19:04 > 0:19:07So at the weekends and on Wednesday evenings
0:19:07 > 0:19:10and Saturday mornings, there's cleaning jobs.
0:19:10 > 0:19:14Hannah is one of 12 young adults living here.
0:19:14 > 0:19:16She's one of the more able residents,
0:19:16 > 0:19:20but the community accepts anyone without a major physical disability.
0:19:20 > 0:19:22I'd love you see your bedroom. Yeah?
0:19:22 > 0:19:25- It might be a bit messy. - It's not messy at all.
0:19:25 > 0:19:29- This is really nice. Isn't it lovely?- Yes. Good.- Lovely colour.
0:19:29 > 0:19:32Very good. Can we see the kitchen?
0:19:32 > 0:19:35- Love to see that. - Oh, this is nice, isn't it?
0:19:35 > 0:19:37Yes, and this is all our jobs.
0:19:37 > 0:19:39- Oh I see, that's a very good idea. - That's brilliant.
0:19:39 > 0:19:42So I'm doing the floor this evening.
0:19:42 > 0:19:45And then I'm cooking on Wednesday night.
0:19:45 > 0:19:49This is all our jobs we have to do, so it goes in a rota.
0:19:49 > 0:19:54- Very well organised, isn't it? - Yes.- Are you living here?
0:19:54 > 0:19:57- No, I'm a support worker. I come and go.- I see.- As we all do.
0:19:57 > 0:19:59Is there somebody who lives in at night time?
0:19:59 > 0:20:02- There's two sleep-ins, yes. - Two sleep-ins.- Yes.
0:20:02 > 0:20:07It seems like walking into somebody's house.
0:20:07 > 0:20:10- It's... yes, it's home.- It's home. - It's home.- It's home, not a home.
0:20:10 > 0:20:12- No.- And that is a huge difference.
0:20:12 > 0:20:14It's home.
0:20:14 > 0:20:18Is there a chance that somebody could just stay here for ever?
0:20:18 > 0:20:20You know, as we all get older, our needs change so, no.
0:20:20 > 0:20:24You cannot say it's a home for life.
0:20:24 > 0:20:27- Bye, Mikey.- Bye!- Nice to see you.
0:20:31 > 0:20:36What a wonderful place. Fantastic atmosphere. Just like a home.
0:20:36 > 0:20:39Rota of duties, like student digs,
0:20:39 > 0:20:43and everybody we've met seems really happy and settled
0:20:43 > 0:20:46and it's exactly the right sort of thing
0:20:46 > 0:20:49for young people with learning disabilities.
0:20:49 > 0:20:53- Thank you.- That's all right. - See you soon. Bye, Mikey.- Bye!
0:20:53 > 0:20:55I still can't believe you haven't contemplated
0:20:55 > 0:20:58having Jack living here, further down the line.
0:20:58 > 0:21:01I would love to but I'm trying to be very grown up about it.
0:21:01 > 0:21:04But, maybe it's not right.
0:21:04 > 0:21:08It seems to me that for Jack to be able to live so close to his parents
0:21:08 > 0:21:11in such a safe community could be perfect.
0:21:14 > 0:21:16'Of course I'd love to see Jack down the road,
0:21:16 > 0:21:22'but I think I must look at the bigger picture for Jack
0:21:22 > 0:21:24'first of all.'
0:21:24 > 0:21:29It would be very easy for Jack to move within our community,
0:21:29 > 0:21:33but I don't feel that that would be kind to Jack,
0:21:33 > 0:21:37in letting him really fulfil his ambitions.
0:21:37 > 0:21:40He's got a lot he wants to achieve,
0:21:40 > 0:21:42because he's got a lot he wants to try.
0:21:42 > 0:21:45There's career paths he wants to follow.
0:21:45 > 0:21:47Yes, I got it in!
0:21:47 > 0:21:50Come on, girls. Are you scared?
0:21:50 > 0:21:55We've got to be incredibly brave by asserting ourselves
0:21:55 > 0:21:58and finding somewhere that's possibly more independent.
0:21:58 > 0:22:02We've got to help him to cater for what he wants to do.
0:22:05 > 0:22:08'Like all mothers, Ronny's trying to strike a balance
0:22:08 > 0:22:10'between allowing her son to follow his dreams,
0:22:10 > 0:22:14'while being realistic about what's possible.'
0:22:14 > 0:22:18It's something that I struggle with, too.
0:22:20 > 0:22:23It's so difficult, you know, you don't want to impose,
0:22:23 > 0:22:27you can't impose what you feel would be right for you,
0:22:27 > 0:22:30on somebody who's not capable
0:22:30 > 0:22:33of making those decisions for themselves.
0:22:35 > 0:22:38So you just have to go with a gut instinct
0:22:38 > 0:22:43and find somewhere that, as much as possible,
0:22:43 > 0:22:47suits the personality of the person.
0:22:48 > 0:22:49< Train!
0:22:49 > 0:22:51< Very good!
0:22:52 > 0:22:54I've got to practice!
0:22:56 > 0:23:00'I doubt that Domenica could ever have a career on the stage,
0:23:00 > 0:23:04'but dance remains her passion. Much more than waiting on tables.'
0:23:07 > 0:23:09I'm going to be 16 soon.
0:23:09 > 0:23:14'Dominic and I have known for years about a dance and theatre school
0:23:14 > 0:23:17'called Chicken Shed, in north London.'
0:23:17 > 0:23:20Shake away those nerves. Shake away those nerves.
0:23:20 > 0:23:22Off you go!
0:23:22 > 0:23:28A third of the students on courses here have some kind of disability.
0:23:28 > 0:23:29The rest are able-bodied.
0:23:31 > 0:23:35If Domenica got a place here, she'd be doing what she loves,
0:23:35 > 0:23:39as an equal alongside other people her age.
0:23:39 > 0:23:44It's fantastic to see her so completely included.
0:23:44 > 0:23:45That's the key.
0:23:45 > 0:23:49That's what we need, one more. Would you be able to stand on one foot?
0:23:49 > 0:23:54And then Sarah, you hold her - I mean Jodie, you hold her hand.
0:23:54 > 0:23:57That's it. That's it. So that's five feet.
0:23:57 > 0:23:58- Freeze!- >
0:24:01 > 0:24:05'To get a place here, Domenica first has to get through an interview.'
0:24:05 > 0:24:07Remember all that we said.
0:24:07 > 0:24:10'Thankfully, what they look for is passion for the performing arts,
0:24:10 > 0:24:13'rather than just academic qualifications.'
0:24:13 > 0:24:15I would just love to be a fly on the wall.
0:24:15 > 0:24:20It's the very first time she's had an interview on her own and she went through with such confidence.
0:24:20 > 0:24:25I mean, this is Domenica's first tentative step into adult life.
0:24:27 > 0:24:31'Half an hour later, and she's out, brimming with enthusiasm.'
0:24:33 > 0:24:36- So do you think you would like it here, darling?- Yes.
0:24:36 > 0:24:39- What was good about it?- The dancing!
0:24:39 > 0:24:42- The dancing! Did you enjoy being on the stage?- Yes.
0:24:42 > 0:24:43Why?
0:24:46 > 0:24:47THEY LAUGH
0:24:51 > 0:24:54Even if Domenica passes the interview,
0:24:54 > 0:24:57it's not down to us whether she can go to Chicken Shed.
0:24:59 > 0:25:03It is the local authority that decides what support she needs,
0:25:03 > 0:25:06who should provide it and what they will pay for.
0:25:10 > 0:25:13'I had no idea, and I'm sure parents don't,
0:25:13 > 0:25:17'that you are not in a position to make those decisions for your child.
0:25:17 > 0:25:20'You can fight - but ultimately, it is not my decision.'
0:25:20 > 0:25:23The local authority has to agree
0:25:23 > 0:25:25that this is the right place for her.
0:25:25 > 0:25:28I have to prove to them that there is nowhere like this
0:25:28 > 0:25:30in East Sussex that can give her the same curriculum.
0:25:32 > 0:25:33It's a nightmare.
0:25:33 > 0:25:36And as a parent, you feel completely disempowered,
0:25:36 > 0:25:42and that makes me feel totally inadequate as a mother.
0:25:59 > 0:26:01Jess Hiles lives in Redditch.
0:26:03 > 0:26:05She has a genetic condition
0:26:05 > 0:26:09which means she has both physical and learning disabilities.
0:26:09 > 0:26:15Although she is 28, in many ways she will always be a child -
0:26:15 > 0:26:18trusting, vulnerable, small in stature
0:26:18 > 0:26:22and in need of constant care and protection from supportive adults.
0:26:27 > 0:26:30With an eye to the future, her parents,
0:26:30 > 0:26:32now approaching their 60s, have found a flat
0:26:32 > 0:26:36where, for the last two years, she has lived on her own.
0:26:38 > 0:26:41Government policy is to encourage independent living
0:26:41 > 0:26:42for adults like Jess.
0:26:44 > 0:26:46But does it actually work?
0:26:48 > 0:26:53If you could decide where you could live, what would you choose to do?
0:26:53 > 0:26:54Live here!
0:26:54 > 0:26:57- You would choose to live here? - This flat!
0:26:57 > 0:27:01- So you really feel that this is your home?- Yes.
0:27:01 > 0:27:05Was it a very big step when you left home, to come here?
0:27:05 > 0:27:06Yes.
0:27:06 > 0:27:09Can you remember what it was like? What did you feel like
0:27:09 > 0:27:14- when your parents left you here for the very first time?- Scared.
0:27:14 > 0:27:16Scared of what?
0:27:16 > 0:27:19For the first time, live on my own.
0:27:21 > 0:27:23And so what did you do?
0:27:23 > 0:27:25Cried my eyes out.
0:27:25 > 0:27:28Do you understand why your parents thought it was a good idea
0:27:28 > 0:27:29for you to live here?
0:27:29 > 0:27:33- Do you think they were looking ahead for when you're older?- Yes.
0:27:33 > 0:27:36- To build up your independence?- Yeah.
0:27:36 > 0:27:40Have you ever had any accidents living here on your own?
0:27:40 > 0:27:43I had a toilet leak.
0:27:43 > 0:27:47Well, that's annoying! And did you know what to do?
0:27:47 > 0:27:49No.
0:27:49 > 0:27:52- So what happened?- Phoned my dad.
0:27:52 > 0:27:55And how about the shopping for your food?
0:27:55 > 0:27:57My dad.
0:27:57 > 0:28:00And are you good with money, is that something you could do on your own?
0:28:00 > 0:28:03No, carer...
0:28:03 > 0:28:06- Dad, dad again.- Yeah.
0:28:06 > 0:28:11I like to see him coming in the mornings, see how I am.
0:28:12 > 0:28:13Keep me going.
0:28:16 > 0:28:21'There are many people with learning disabilities like Jess in Britain -
0:28:21 > 0:28:25'too capable to accept life in an institution,
0:28:25 > 0:28:30'but not capable enough to manage life alone without support.
0:28:30 > 0:28:34'But who is actually providing that support?
0:28:35 > 0:28:37'Her father, Barnaby, lives nearby.
0:28:37 > 0:28:40'He calls in every morning before work
0:28:40 > 0:28:42'to get Jess ready for the day ahead.'
0:28:44 > 0:28:47Hey, Jess. How are you doing? Did you sleep all right?
0:28:47 > 0:28:48Yes, you?
0:28:48 > 0:28:51Yeah, yeah. I overslept a bit this morning.
0:28:54 > 0:28:56- So you slept OK?- Yes.
0:28:56 > 0:28:57Fantastic.
0:28:59 > 0:29:01- Can I wash your hair?- Yes.
0:29:02 > 0:29:05Like so many parents, it's clear that Barnaby
0:29:05 > 0:29:08is prepared to do anything to support his daughter.
0:29:08 > 0:29:12I love your taps, Jess, they're so easy to use.
0:29:12 > 0:29:13- Is that cold?- No.
0:29:13 > 0:29:15HE CHUCKLES
0:29:16 > 0:29:19- Shall we do just the one today or do you want two?- No.
0:29:19 > 0:29:22Just the one. OK, that's splendid.
0:29:22 > 0:29:25Barnaby, do you come round every morning to do this?
0:29:25 > 0:29:27Yes. Yes, I do, yeah.
0:29:27 > 0:29:31I don't wash her hair every morning, but pretty much every morning.
0:29:31 > 0:29:36I look for the shine and see if it needs it and it's fine today.
0:29:36 > 0:29:39- And that's something that Jess couldn't do on her own?- No.
0:29:39 > 0:29:42She can get her arms up here, but she can't keep them there.
0:29:42 > 0:29:46You're quite happy to have baths by yourself, aren't you, Jess,
0:29:46 > 0:29:51but it's things like hair washing, and certainly the nails,
0:29:51 > 0:29:54shaving under her arms, that kind of thing
0:29:54 > 0:29:56that you can't do, can you, Jess?
0:29:56 > 0:29:58No.
0:29:58 > 0:30:00It looks great.
0:30:00 > 0:30:02Thank you! I've had lots of practice.
0:30:04 > 0:30:07Don't forget to turn the light off, Dad.
0:30:07 > 0:30:09Well, you were last in, Jess!
0:30:10 > 0:30:12Jess also suffers from a foot deformity,
0:30:12 > 0:30:16which means she has to have special shoes and splints.
0:30:16 > 0:30:19Eventually, she'll have to use a wheelchair.
0:30:19 > 0:30:22Jess needs help with all the many little things
0:30:22 > 0:30:25that most adults take for granted.
0:30:25 > 0:30:27That was well in.
0:30:27 > 0:30:29Here, some bread.
0:30:29 > 0:30:34'She has no problem making friends and socialising with people.
0:30:34 > 0:30:36'She doesn't seem to get lonely.'
0:30:36 > 0:30:41But were she completely independent, were there no support whatsoever,
0:30:41 > 0:30:43the flat would become unliveable-in.
0:30:43 > 0:30:44She wouldn't clean it.
0:30:44 > 0:30:48She would probably fall back on a convenience diet
0:30:48 > 0:30:50that would be really bad for her.
0:30:50 > 0:30:54Her personal hygiene would probably deteriorate.
0:30:54 > 0:30:59And it's that kind of bedrock of support
0:30:59 > 0:31:03to keep her living safely that she could not live without.
0:31:07 > 0:31:10During the day, while Barnaby is at work,
0:31:10 > 0:31:13Jess goes to a Garden Centre for work experience.
0:31:13 > 0:31:18It's a charity set up to help people with learning disabilities.
0:31:21 > 0:31:23She comes here two days a week.
0:31:28 > 0:31:32When Jess comes to us, she is, if you like, not being looked after,
0:31:32 > 0:31:34but she's in a safe environment.
0:31:34 > 0:31:39And she's got people who understand Jess's needs, if you like.
0:31:39 > 0:31:41And I think if they had that more days per week,
0:31:41 > 0:31:43it would be a great help to her.
0:31:43 > 0:31:48- I think we are mum and dad to a lot of people here.- I'm sure you are!
0:31:48 > 0:31:51What we're going to do today is cut the pieces of green about this long,
0:31:51 > 0:31:54put them into a little pile, then we can wire them into the wreath.
0:31:56 > 0:31:59Organising this placement has been difficult -
0:31:59 > 0:32:02initially the council presumed Jess was being paid,
0:32:02 > 0:32:05so for a while, they stopped her income support
0:32:05 > 0:32:08and she faced eviction from her flat.
0:32:08 > 0:32:09Thank you, Jess.
0:32:09 > 0:32:14But Jess is not paid, and a place here is expensive.
0:32:15 > 0:32:19Jess has to pay the centre £50 a day.
0:32:19 > 0:32:24And Jess, do you feel a sense of achievement when you finish one?
0:32:24 > 0:32:25- Yeah.- I bet you do.
0:32:25 > 0:32:28That is great.
0:32:28 > 0:32:31LAUGHTER
0:32:36 > 0:32:38Jess' parents are amicably separated,
0:32:38 > 0:32:40and they share Jess' support.
0:32:43 > 0:32:46Although her mother Jo lives an hour's drive away,
0:32:46 > 0:32:49she is constantly on hand to help with everyday things
0:32:49 > 0:32:53like cleaning, shopping, and Jess' many medical appointments.
0:32:56 > 0:32:59It's time-consuming, and Jo has found it hard to keep a job
0:32:59 > 0:33:01while also looking after Jess.
0:33:05 > 0:33:07But she felt she never had any choice.
0:33:12 > 0:33:14I do get asked a lot.
0:33:14 > 0:33:17It's the guilt, "Why aren't you living with your daughter?
0:33:17 > 0:33:19"Why isn't she living near you?"
0:33:19 > 0:33:22'And it's when I say I'm not going to be there, I can't choose.
0:33:22 > 0:33:26'Jess wants to live independently, and why shouldn't she?'
0:33:28 > 0:33:30This really isn't independent living
0:33:30 > 0:33:34if both of you are involved to the extent that you are, is it?
0:33:34 > 0:33:35No.
0:33:35 > 0:33:36And it doesn't work?
0:33:36 > 0:33:38No.
0:33:38 > 0:33:42No, and certainly not without us at the moment.
0:33:42 > 0:33:46And what are her existing care provisions?
0:33:46 > 0:33:49She currently gets seven hours' support a week.
0:33:49 > 0:33:51Five of those are provided for,
0:33:51 > 0:33:55funded by something called Supporting People.
0:33:55 > 0:33:58And two she buys herself, from her benefits.
0:33:58 > 0:34:03Now, our big problem is that the rules and the parameters are
0:34:03 > 0:34:05that those Supporting People hours
0:34:05 > 0:34:08don't involve any kind of personal care at all.
0:34:10 > 0:34:13And within those five hours of non-personal care,
0:34:13 > 0:34:17if something needs doing, Jess is expected to ask for it to be done.
0:34:22 > 0:34:24And often, Jess just doesn't know how to.
0:34:29 > 0:34:32I think Supporting People is probably fine for the people
0:34:32 > 0:34:34for whom it's been invented,
0:34:34 > 0:34:37but then it's been applied to an extra tranche of people,
0:34:37 > 0:34:40for whom it's completely useless.
0:34:40 > 0:34:44That's why we are challenging authorities about it.
0:34:44 > 0:34:47She's not catered for with the right support and care -
0:34:47 > 0:34:49it's never been there.
0:34:50 > 0:34:53Do you get on with your carers?
0:34:53 > 0:34:56Some of them, and some not.
0:34:56 > 0:35:01- You've had problems with your eyes too, haven't you?- I had cataracts.
0:35:01 > 0:35:05- So that's why your father at the moment is putting in drops?- Yes.
0:35:05 > 0:35:06Would your carers do that?
0:35:08 > 0:35:10- And you can't do that?- No.
0:35:13 > 0:35:17What would be the ideal solution for you with Jess?
0:35:17 > 0:35:21In an ideal world, what would be lovely is for sheltered accommodation
0:35:21 > 0:35:24to be made available for people with learning disabilities
0:35:24 > 0:35:28so they can have their own flat, but also the communal room,
0:35:28 > 0:35:33and someone on call, but also have their care if they should so want.
0:35:33 > 0:35:36- But there isn't anywhere. - Nowhere round here?
0:35:36 > 0:35:39Nowhere round here. The funding isn't there.
0:35:39 > 0:35:42- Have you done one of Jo?- No.- Come on.
0:35:42 > 0:35:44That's brilliant, Jess!
0:35:44 > 0:35:46When Jess moved into the flat two years ago,
0:35:46 > 0:35:50Jo and Barnaby believed that they could get sufficient care
0:35:50 > 0:35:52not to have to be on call around the clock.
0:35:52 > 0:35:55What else do you say at Christmas?
0:35:55 > 0:35:58But it seems the right outside support and care
0:35:58 > 0:36:00that independent living requires only comes
0:36:00 > 0:36:04when there is a clear medical diagnosis,
0:36:04 > 0:36:07and Jess doesn't have one.
0:36:07 > 0:36:10Brilliant. Absolutely brilliant. I love that.
0:36:10 > 0:36:13We'd been through lots of tests, we didn't know whether she had a syndrome or not,
0:36:13 > 0:36:16it was thought she might have Williams Syndrome.
0:36:16 > 0:36:18But she failed the last little test,
0:36:18 > 0:36:23and that would make life an awful lot easier, if she had a label.
0:36:23 > 0:36:25That's when the nightmare began.
0:36:25 > 0:36:28And not having a diagnosis makes it difficult
0:36:28 > 0:36:31to access the support that you need, I presume.
0:36:31 > 0:36:32Absolutely.
0:36:32 > 0:36:38Because she hasn't got a label, she has never had a care package.
0:36:38 > 0:36:41Which is just the thing we so desperately need for Jess.
0:36:44 > 0:36:48Jess has had tests which show a 98% match for Williams syndrome,
0:36:48 > 0:36:52but apparently this cannot be conclusively diagnosed.
0:36:52 > 0:36:54It's a rare genetic disorder,
0:36:54 > 0:36:59with symptoms that closely match Jess's - physical abnormalities,
0:36:59 > 0:37:02heart problems, learning disabilities
0:37:02 > 0:37:04and an overly trusting nature.
0:37:05 > 0:37:08Barnaby and Jo are deeply frustrated by their inability
0:37:08 > 0:37:12to get a consistent, confirmed diagnosis
0:37:12 > 0:37:14and the care that would go with it.
0:37:15 > 0:37:18We have yet another assessment
0:37:18 > 0:37:21and then the goal posts move, and we have yet another assessment.
0:37:21 > 0:37:25We also had a recent telephone call which I'm so glad Barnaby answered,
0:37:25 > 0:37:28saying about yet another medical assessment,
0:37:28 > 0:37:30and Barnaby said, "Will this just be the one-off?"
0:37:30 > 0:37:33They said, "No, we'll have to do it quite often
0:37:33 > 0:37:36"to see if Jess ever gets better."
0:37:39 > 0:37:42But she isn't going to get better.
0:37:45 > 0:37:49As both she and her parents grow older,
0:37:49 > 0:37:51she's probably going to get worse.
0:37:56 > 0:38:00It's that constant, 24-hour worry...
0:38:00 > 0:38:05what if I drop dead tomorrow, Barnaby isn't around,
0:38:05 > 0:38:07what's going to happen to Jess?
0:38:09 > 0:38:12And there have been times where...
0:38:12 > 0:38:15There's been a couple of times recently and in the past
0:38:15 > 0:38:19where I've wanted to crawl into that corner, go to sleep and not wake up.
0:38:19 > 0:38:24I'm tired. I just don't want to carry on much longer, but I will.
0:38:24 > 0:38:26She's Jess, and I've got to be there for her,
0:38:26 > 0:38:28but I'm not going to be there forever.
0:38:30 > 0:38:33How are we going to start, Jess?
0:38:33 > 0:38:34Yup, yup.
0:38:38 > 0:38:39Go on then, you look!
0:38:41 > 0:38:44OK, check.
0:38:44 > 0:38:46That looks good, that looks good.
0:38:46 > 0:38:49You've told me what the good things are about living here on your own.
0:38:49 > 0:38:51What are the bad things?
0:38:52 > 0:38:54Nothing.
0:38:54 > 0:38:56None at all. You're never, ever lonely?
0:38:58 > 0:38:59Got my teddies!
0:39:00 > 0:39:03How long have you had Cuddles?
0:39:03 > 0:39:07Six... Six and a half years. I think.
0:39:07 > 0:39:08Yes.
0:39:09 > 0:39:12Could you manage to live here without your parents?
0:39:17 > 0:39:18Hard.
0:39:18 > 0:39:21That would feel...hard.
0:39:27 > 0:39:30'Jess is not living independently.'
0:39:30 > 0:39:33Chronologically, she may be 28,
0:39:33 > 0:39:37but mentally, she's still clearly a child.
0:39:37 > 0:39:41And I do not understand the lack of a care package.
0:39:41 > 0:39:45And it just doesn't seem at all right or fair,
0:39:45 > 0:39:49and both parents seem to be under an enormous amount of stress.
0:39:49 > 0:39:52And it's very easy to understand why.
0:39:52 > 0:39:56Yes, we are all the same, yes, we are all equal,
0:39:56 > 0:40:00but some of us are more vulnerable than others, and need more care
0:40:00 > 0:40:04and more looking after, and someone like Jess - absolutely,
0:40:04 > 0:40:07and my daughter - fits into that category.
0:40:07 > 0:40:11And we're not, as a society, doing what we should.
0:40:11 > 0:40:12And if you judge a society
0:40:12 > 0:40:15by the way it looks after its most vulnerable,
0:40:15 > 0:40:18then we're really, truly lacking.
0:40:30 > 0:40:34It's Domenica's big day. She's turning 16.
0:40:34 > 0:40:38THEY SING "Happy Birthday"
0:40:38 > 0:40:41She doesn't realise how her life is going to change
0:40:41 > 0:40:43in the years to come,
0:40:43 > 0:40:47but she's beginning to take her very first steps towards adulthood.
0:40:47 > 0:40:50There's no easy way for any of these young people
0:40:50 > 0:40:52to lead independent lives.
0:40:52 > 0:40:53Make a big wish now.
0:40:53 > 0:40:56Ultimately letting go means taking risks
0:40:56 > 0:41:00and putting your trust in others to keep your child safe,
0:41:00 > 0:41:04and that's what makes it all the more difficult.
0:41:04 > 0:41:06Can I say, erm, thanks for coming.
0:41:06 > 0:41:07- Aw!- >
0:41:07 > 0:41:08Well, that's it.
0:41:08 > 0:41:10LAUGHTER
0:41:11 > 0:41:15'The fact that she's 16 makes me look ahead.'
0:41:15 > 0:41:17I have to confront my own mortality
0:41:17 > 0:41:20and the fact that I'm not going to be there to look after her,
0:41:20 > 0:41:22'and really, she's always going to be a child
0:41:22 > 0:41:25'and always have the requirements of a child,
0:41:25 > 0:41:28'and as a mother, you want to be there for your child,'
0:41:28 > 0:41:31and I'm not going to be.
0:41:31 > 0:41:33Thank you, Mummy.
0:41:33 > 0:41:34OK!
0:41:38 > 0:41:41- Is there anything you want to ask me at all?- No.
0:41:41 > 0:41:44- All right. Take it out and put it in your hand.- Mum!
0:41:44 > 0:41:48- Do you want to tell me what you're going to do?- Mum!
0:41:48 > 0:41:50- The bus will be here in a minute. - Yes, I know!
0:41:50 > 0:41:53Don't forget to ring me!
0:41:54 > 0:41:56Ah...
0:41:56 > 0:42:00Three months on, and Jack's making his first trip on a bus on his own.
0:42:04 > 0:42:08While his mother Dawn decides what to do next,
0:42:08 > 0:42:10Richard is still at home.
0:42:15 > 0:42:18Jess's parents are still fighting
0:42:18 > 0:42:20to get official acceptance of her condition,
0:42:20 > 0:42:23which they believe will unlock the sort of care
0:42:23 > 0:42:26that will secure her future.
0:42:26 > 0:42:29And Domenica's just got an important letter.
0:42:29 > 0:42:31- Oh, it's Chicken Shed!- Wow!
0:42:33 > 0:42:34What it says...
0:42:34 > 0:42:37Do you know what that means? "We are delighted."
0:42:37 > 0:42:40Why are they delighted? To offer you a place.
0:42:40 > 0:42:43- So does that mean I'm in? - That means you're in.- Yay!
0:42:43 > 0:42:46- That means you're in! - Mummy! I'm gonna be at Chicken Shed!
0:42:46 > 0:42:49- That is amazing, darling! - Oh, Mummy!
0:42:54 > 0:42:57Subtitles by Red Bee Media Ltd