Respite Care Review - Jersey Mencap - 2 March 2012

STATES OF JERSEY

Health, Social Security and Housing Scrutiny Panel

Respite Care Review

Session 2

FRIDAY, 2nd MARCH 2012

Panel:

Deputy K.L. Moore of St. Peter (Chairman) Deputy J.A. Hilton of St. Helier (Vice-Chairman) Deputy J.G. Reed of St. Ouen

Witness:

Business Manager, Jersey Mencap

Present:

Ms. K. Boydens (Scrutiny Officer) Ms. F. Carnegie (Scrutiny Officer) Mr. S. Jones (Adviser)

[11:59]

Deputy K.L. Moore of St. Peter (Chairman):

Thank you very much for coming to see us today. It is very useful and we really appreciate the time. This is essentially a public hearing, so we will formally introduce ourselves for the record, so I am Kristina Moore , the Chairman of this Panel.

Deputy J.A. Hilton of St. Helier (Vice-Chairman): I am Deputy Jackie Hilton, Vice-Chair of this Panel.

Mr. S. Jones (Adviser):

I am Sion Jones. I am advising the panel on their review.

Deputy J.G. Reed of St. Ouen : Deputy James Reed, panel member.

Ms. F. Carnegie:

Fiona Carnegie, Scrutiny Officer.

Ms. K. Boydens :

Kellie Boydens , Scrutiny Officer.

The Business Manager for the Jersey Mencap.

The Deputy of St. Peter :

Thank you, Sue. There are also some notes there to explain the process, if they are useful to you. So how long have you been involved with Jersey Mencap?

[12:00]

Business Manager, Jersey Mencap:

I have been involved with Jersey Mencap for about 15 years. I am the parent of a young man with a learning disability and I started interest with Jersey Mencap just by being on the Committee, and then I became employed very few hours and then the role has gradually grown.

The Deputy of St. Peter :

So now how many sites do you control?

Business Manager, Jersey Mencap:

We have an admin office in La Rue Asplet on the Acorn Enterprises site. We have Alex Wiles, who is our new admin officer there. We do not control any of the sites, I hasten to add, but we have an office in the grounds of the Howard Davis Farm, where we run a STEPS project, which is a new training and employment project, and I am co-ordinating that project from Howard Davis Farm.

The Deputy of St. Peter :

Okay, and do you have any involvement with the Les Amis Project at Maison Allo and the Lodge?

Business Manager, Jersey Mencap:

We own 4 houses that are managed for us by Les Amis. One of those houses is Maison Allo. We do own the property. Up until last year, we had the service level agreement with Social Services to run the respite service there, but that was handed over to Les Amis, really to cut out the middle man.

The Deputy of St. Peter :

So you have less of an involvement on that day-to-day?

Business Manager, Jersey Mencap:

We have less of an involvement. We own the property.

The Deputy of St. Peter :

You would, I guess, control maintenance of the properties?

Business Manager, Jersey Mencap:

Yes. They do have a sort of mend and repair type of lease agreement. It is just on a lease as if we were any sort of property owner, but if big events

happen, we do pay, if they need a new boiler, and obviously if they need a new car. There are things they need that they will come to us for funding for.

The Deputy of St. Peter :

Are you as a group, an organisation, content that your buildings are fit for their current purposes?

Business Manager, Jersey Mencap:

We are very pleased with Maison Allo and I would be surprised if any of the families that use Maison Allo were not delighted with the house there and the actual site and the service that they get there.

The Deputy of St. Peter :

What about some of the other buildings?

Business Manager, Jersey Mencap:

The Les Amis building, which is for adult respite, is not fit for purpose and Jersey Mencap were fundraising to buy a new house specifically for adult respite. Times have changed. Fundraising challenges are very different and there is work in the pipeline for one of the housing trusts now to build that house. The money we have got we raised in the house appeal, we have written to all the donors asking them if we can use it now. It is still for adult respite, but in the event of this new house, will be used to sort kit out and fit the new house. Because we had specifically asked for money for a house, we then are obliged to go to those people who gave us money for a house to check that we can change the purpose that we have got their money for.

The Deputy of St. Ouen :

Sorry, just for my own benefit, can you explain why ... it is basically financial that you are not aiming to provide an actual house?

Business Manager, Jersey Mencap:

It is basically financial. Initially, we did think that even if we bought a house ... like Mrs. Allo, God bless her soul, left us money. We were just about to start a children's respite house appeal and Mrs. Allo's money just dropped into our lap. Sad circumstances, but that is what happened. We thought if we were in the situation whereby that happened again and someone said: "Here is £1 million, buy your house" that it would cost more to run than Social Services would be willing to pay. That situation apparently is not the case now, and Social Services and the running costs are in line with what it would cost, and so a standalone house could work with the funding available. But the housing trust now, Les Amis are working with the housing trust and we are involved in that as well and they have got a piece of land that is part of the big garden of a house that they already run. The house is owned by the housing trust, La Rue De La Blinerie in Trinity , and it had a huge garden and there is room on that site to build another house and that is the site that they are proposing they build an adult respite house on.

The Deputy of St. Peter :

That would be for sort of age 18 up?

Yes.

The Deputy of St. Peter :

For people on the autism spectrum as well as physical needs as well?

Business Manager, Jersey Mencap:

Les Amis and Social Services will get the criteria together for that specifically. Historically, you would think Les Amis, Jersey Mencap learning disabilities, but the criteria is shifting somewhat.

The Deputy of St. Peter :

Okay, and if your donors are content to go ahead, how long do you think it will be before the project is built and is ready for people to stay there?

Business Manager, Jersey Mencap:

Well, I am assured that I am on the list of the first people to know when it goes to planning. We have had a few meetings about it and the plans need tweaking and there are considerations in the aspects of the building itself before it goes to planning, so it is a way off.

The Deputy of St. Peter :

You must need quite specialist design consultancy to cope with all the needs of the various people that it will accommodate. Who do you go to?

Business Manager, Jersey Mencap:

There are O.T.s (occupational therapists). You would use an O.T. to go in for the physical needs and then the inspectors would go in and look at it and make sure it is up to regulations for fire and everything else, but that is sort of usually dealt with at the planning stage. From a new build, it is much easier to make sure it is in than buying an old house and getting them put in, which can be very expensive.

The Deputy of St. Ouen :

So does Mencap, because of its constitution, differentiate between learning difficulties and behavioural difficulties?

Business Manager, Jersey Mencap:

Well, it is according if there is a dual diagnosis, someone with a learning disability can have behavioural difficulties. Sometimes it is the frustrations of having a learning disability and knowing you have got a learning disability and your choices not being listened to and not doing what you would like to do. So sometimes the behavioural difficulties can be as much about the environment and the way you are listened to, but there are some children with a dual diagnosis, you get learning disabilities, A.D.H.D. (attention deficit hyperactivity disorder) learning difficulties and the autism spectrum, learning disabilities with Tourette's Syndrome. There is lots of dual diagnoses.

The Deputy of St. Ouen :

So you do spill over and support autistic youngsters?

Business Manager, Jersey Mencap:

Oh, we do. Yes, we do. If you looked at the figures for Maison Allo, there are children there with learning disabilities and on the autistic spectrum and with A.D.H.D. and with Tourette's Syndrome.

The Deputy of St. Ouen : Okay, thank you.

The Deputy of St. Peter :

What is your experience of working with Social Services and have you had a good relationship and been able to easily define service level agreements when the time has been right?

Business Manager, Jersey Mencap:

It is mixed. I suppose we are all under limitations. Social Services are under financial pressures, like any other departments. When we did have the service level agreement with Maison Allo, we were invited to a meeting to discuss how we could cope with the cut-backs and we searched for solutions and we did find a savings which involved some joined up working: "We do this training, you do that training. If we have our training with you, that would save so much money." We sort of did work through it with Les Amis and Social Services in that way. Relationships are always going to be strained, because if the third sector were not fighting for improvements and for the retention of services, they would not really be doing their job properly. So there are strains. I would say sort of specifically relevant to this panel is the transition, and transition is the word, and it is almost an ugly word in services, because it is when people get to that transition stage that things seem to start to fall apart. I think to some extent Social Services missed a trick when they were restructuring recently into children, adults and older people by not having a transition team. I think a transition team would be the answer to so many people's issues.

The Deputy of St. Peter :

They  do  that  in  the  U.K.  (United  Kingdom),  do  they  not? Our  previous interviewee has mentioned that that is called a connections service, which mediates between children and adult services in the U.K.

Business Manager, Jersey Mencap: Yes.

The Deputy of St. Peter :

You think that would be beneficial?

Business Manager, Jersey Mencap:

I think it is almost a vital service that we are missing. I suspect that there are not many parents that would suggest that a transition service is something that we need.

The Deputy of St. Ouen :

Can I just pick up, you spoke about cut-backs, cut-backs - can I be clear - on what?

Business Manager, Jersey Mencap:

It was one thing, they were doing the 3 per cent this year and then I cannot remember the exact percentages, but the first cut was a 3 per cent cut to ... I think it was all third sectors.

The Deputy of St. Ouen :

This is to individual grants, is it?

Business Manager, Jersey Mencap:

Yes, it was. Yes. It was only a couple of years ago and it was 3 per cent. It was the first sort of raft of cuts.

Deputy J.A. Hilton:

Did that cut still happen though? Was that when ...?

Business Manager, Jersey Mencap:

We were very fortunate. We got some funding from Lloyds TSB.

Deputy J.A. Hilton: Oh, right.

Business Manager, Jersey Mencap:

There had always been a bit of a shortfall in the Maison Allo fundings, but we got funding from Lloyds TSB on the understanding that after the 3 years that Lloyds were funding the shortfall, Social Services took it over and Social Services did indeed take over that shortfall.

Deputy J.A. Hilton:

Yes, I think that was 2008.

Business Manager, Jersey Mencap: It started, yes.

The Deputy of St. Peter : As well as the ...

Business Manager, Jersey Mencap:

Sorry, the transition, I mean, I have spoken to the respite manager about it and she is concerned about it, because some of the children may be a closed case and it could be a family that uses lots of services but all their services are in place, everything is going well and they are a closed case, and because they are a closed case, they are not moved on into the adult service, and it is the family then has to refer themselves. Referrals for respite can only come through Social Services, so because the child is finished, there is not an automatic swap over to an adult social worker. There is no named social worker for that family to go to, so the family then have to start phoning Social Services, getting a named social worker to refer them for the adult service, and to some extent, Les Amis are the ones doing the reminder, doing the chasing up and it is not really their role. It is the family should not need to be told that they have to do this at a certain age: "Okay, he is 18 next week." It is almost a transition team would be pinging up at age 14 for education and pinging up, and instead it seems as if a fortnight before people are 18, alarm bells are ringing off all over the place instead of these little pings along the way.

The Deputy of St. Peter :

What do you mean by a closed case? Is that the child has had a social worker who has organised their access to certain respite services and then they close the case because it is done and dusted, so the service continues until they are 18?

Business Manager, Jersey Mencap:

Yes, that is exactly it, and then at 18, there is no automatically the parents getting ready for that 18, do not have a named social worker that they can sort of contact, and that is where the transition service would click in.

The Deputy of St. Peter :

As well as Maison Allo and the Lodge, are you involved in any other projects like the Inclusion Project or Holiday Project?

Business Manager, Jersey Mencap:

We part-fund the Inclusion Project. There is an after-school club on Thursday, and we have just made a commitment to fund that for the next 2 years, but I was going to raise holiday clubs because you might remember this, Jackie, but I cannot remember how many years ago it was, but in mainstream school, there are holiday clubs for children up to aged 12, I believe it is, but then sort of all sorts of activity camps and things that they access after the age of 12 if they want to. This sort of service is not available for young people with a learning disability.

[12:15]

I believe there are a few young people with a learning disability do access those mainstream post-12 activities, but for some, the level of support they need means that they cannot go to those mainstream activities. A few years ago, there was education and Social Services and Jersey Mencap and, if I remember rightly, the Youth Service all clubbed together and did a post-12 activity club. It was based at the Mont à l'Abbé School provision at Haute Vallee. I believe it is still going on. I do not know if Rachel Sawyer has been involved in this process. She co-ordinates that activity; she works for education, sport and culture, Rachel Sawyer. I have been trying to get hold of her, but we just miss each other, you know what it is like, too much technology. But I think Rachel might be worth speaking to, because initially part of that funding, Jersey Mencap as a charity could approach Help a Jersey Child and we did at the time. It just seems a precarious way to fund such a battle for service. So I do not know if that is something that Scrutiny might

think about. There are some very long holidays out there and some parents find them very stressful. It is a bit of a crisis point.

Deputy J.A. Hilton:

So Jersey Mencap fund ... can you just explain to us what you fund in the way of youth club provision?

Business Manager, Jersey Mencap:

The Inclusion Project, there is a Thursday afternoon club and pupils from Mont à l'Abbé School go to St. Lawrence straight from school. It is really popular and the parents and the young people that go love it, they really appreciate the service. We have just committed to funding that after-school club for the next 2 years.

Deputy J.A. Hilton:

That is the only scheme that currently Jersey Mencap are helping to fund?

Business Manager, Jersey Mencap: We are helping to fund that, yes.

Deputy J.A. Hilton:

Because a previous person, a witness here, said that they thought Jersey Mencap funded some sort of youth club provision somewhere.

Business Manager, Jersey Mencap: That is the youth club provision.

Deputy J.A. Hilton: That is that, right.

Business Manager, Jersey Mencap:

We paid for a support worker at Maufant Youth Club to enable some young people with learning disabilities to access the mainstream club, so instead of a separate provision, the young people went to Maufant. Now, I am not sure that that funding has not stopped now, and they have not asked us for it again, so maybe that is something we should chase up.

Deputy J.A. Hilton:

Okay. There was a query over a couple of youngsters with autism at the more severe end who were not able to access the Inclusion Project which takes place at La Pouquelaye School, but a previous witness thought that maybe Jersey Mencap were including those individuals in their youth club night.

Business Manager, Jersey Mencap:

We do not have a youth club night. We have a social club.

Deputy J.A. Hilton: Oh, right. Okay.

We have a social club that we pay for support workers, although we have got a couple of volunteers who work on that club as well once a fortnight, but with lots of events in between. Sometimes it is 3 times a week if there is a great show on at the foreshore or if there is something really good on somewhere. It was the Moscow Circus on Saturday: "Very bendy ladies" is what I was told, and we fund that and that we do have some people on the autistic spectrum that attend that club. It is quite popular, you can range in having 5 people going out to 19 people going out.

Deputy J.A. Hilton: Oh, right. Okay.

The Deputy of St. Ouen :

What are Mencap's plans for the future? I mean, how do they see their role developing, if at all, with regard to the ongoing provision for support and respite?

Business Manager, Jersey Mencap:

I think it is very much needs-led. We will be continuing very much what we are doing now. The STEPS project was a new direction for us, and it was quite a big deal going to a different base for that project, working with a different group of people in an area that we had not worked in before. It was quite fortunate that I previously worked with the Jersey Employment Trust and I had gone through all their training programme and I was quite confident that we could pull it off, and I think we are doing quite a good job on it. But we have a new Chairman now, Carol Canavan is our new Chairman, and we think Carol is settling in, you know, she is bedding in, and I think Carol will move us forward in the direction that our clients are saying we need to be moving.

The Deputy of St. Ouen :

Can you just explain to me, I mean, you talk about this STEP project that you are doing.

Business Manager, Jersey Mencap:

The STEPS project, yes. It is towards employment progress. It is funded by Social Security and we are one of 4 arms of the STEPS project. The Jersey Employment Trust are doing a pre-employment course; Autism Jersey are doing life coaching; Mind Jersey are doing supported volunteering and we are doing life skills and pre-vocational training.

The Deputy of St. Ouen :

How was it decided that all of these different organisations should provide these different programmes when we have the Jersey Employment Trust and Workwise already there?

Business Manager, Jersey Mencap:

It is for clients that are not ready to access those training courses. The course we are on, what we do is we have done travel training with some

individuals, because they could not access any training courses. We do appropriate behaviours and relationships, because they were finding it difficult to work in a group. Some of our clients do not understand the difference between work and leisure and activities; really historical, because people may have been going to the day centre, but sort of the language used was: "Come on, you have got to get to work" and it is really difficult. We can spend weeks with someone just working on what the difference is between work and leisure and day services, and until the person understands those, then you cannot move them forward to training or the Jersey Employment Trust. Our objective is to get people ready for training, so it is ...

The Deputy of St. Ouen :

So it is like developing life skills?

Business Manager, Jersey Mencap:

Yes. It is not just about that though. If it was just about life skills, we would not be sort of doing what we were being paid to do. It is about life skills directly related to getting a person into training for work.

The Deputy of St. Ouen : Right, okay.

The Deputy of St. Peter :

Is that held at Highlands, that course?

Business Manager, Jersey Mencap: No, we do that from Howard Davis Farm.

The Deputy of St. Peter :

Howard Davis Farm, okay. You mentioned that Mencap is a needs-led organisation. What access do you get to see demographic information, because lots of people have said that there is an increase in diagnosis and therefore a greater number of children presenting on the autism spectrum or with special needs.

Business Manager, Jersey Mencap:

We do not have any access to statistics. People find us or we have sent our information out there. I suppose the first contact should be at birth, but historically parents have felt - and I can speak as a parent on this extent - that for quite a few years you are in a bit of denial: "Not my boy. He is going to be fine. No, he is not going to need that. No, he is not going to want this." Just: "No, I do not want that. My boy is not disabled" and it is quite difficult for a few years, but if there was ... the P.D.C. (Professional Development Centre) I know do a good job at Overdale and we sort of make donations. They have a fabulous Christmas party at the P.D.C. and we make a donation towards the cost of that party, and at that point, if there was sort of some communication between them and Jersey Mencap, that could possibly be the earliest that parents would hear about us. But as soon as they go to Mont à l'Abbé School or any of the other schools, we publish a magazine 3 times a year and there is lots of information in there.

Mr. S. Jones:

Is it your gut feeling that over the years, the numbers of children presenting with learning difficulties has changed upward then?

Business Manager, Jersey Mencap:

We are always told that the number of children with profound and multiple disabilities is increasing, and that is because of the better intensive care.

Mr. S. Jones: Medical, yes.

Business Manager, Jersey Mencap:

Along with that will come greater pressures on the respite service and every other service. I think parents are more aware. There is more information out there, and so diagnosis is being made sooner. I do not know how the figures are increasing across the schools, and that could be that more children are being included in the mainstream schools, but we do not have access to any ... there is no specific database that we can go to, not even with just figures. Obviously data protection, you do not expect to know everything about everybody, but a set of statistics might be good, and to that aim, I did ring the Statistics Office, it must be 2 or 3 years ago, and I do not remember who I spoke to, but I did say that it could be an idea, that the next census we have - after the horse bolted and I am saying this to you - that there could be space for asking this question. It is a very simple question, you are catching everybody. It is not something that only a few people would fill it. They have got to fill it in, and a newborn child would be on it, and that is another trick missed, I think.

The Deputy of St. Ouen :

Tell me, how would you describe Mencap's relationship with other, for want of a better term, third sector providers?

Business Manager, Jersey Mencap:

I think it is okay. The closest working relationship we have is with Autism Jersey, and that is mainly because we sit on lots of the same meetings together, but I would say that was the main charity that we have the most involvement with, apart from Les Amis, which is incorporated into Jersey Mencap, but because we have set it up purely to get group homes rolling.

The Deputy of St. Ouen :

Have parents made you aware of their frustration that they are not properly informed about the services and support that is available to them?

Business Manager, Jersey Mencap:

Not really. A few people have when they finally got things right, like: "I did not know this was there. I did not know that was there" but we have tried in the past. We have had events, evening events at the school where we got together such a huge group of professionals and then 5 or 6 parents might come along, and it is really you are apologising to the professionals for the lack of people who come. We had an awareness-raising event in the Royal Square this year, and there was all different services were out there, and you think: "Okay, you are not grabbing people at night, let us do it in the day, on a lovely day on a Saturday in the middle of the day and give it lots of publicity" and that, it went really well, but you are never going to meet everybody's ears.

The Deputy of St. Ouen :

I am just thinking that you speak about a newsletter, I think, and I just wondered if the organisation had produced any literature that identified what parents should do and the people that they should contact and approach, so in other words, a guide.

Business Manager, Jersey Mencap: A guide?

The Deputy of St. Ouen :

That linked to how to meet the needs of your clients.

Business Manager, Jersey Mencap:

No, we have not got a specific brochure on that, and we have not got a specific sort of day one, you have a diagnosis that your child has a learning disability: "This is what you could be doing, ding, ding, ding." Yes, that is something that we should think about, James.

The Deputy of St. Ouen :

Currently you do not have that sort of thing?

Business Manager, Jersey Mencap:

We have not got that, no. We have got leaflets about the things that we provide and the Social Services have leaflets about what they provide and different people have different leaflets.

The Deputy of St. Ouen :

Because the other thing that has come up in our discussions with parents is about income support and obviously ...

Business Manager, Jersey Mencap: Oh, income support.

The Deputy of St. Ouen :

Do you have any literature that you provide to parents that helps them deal with matters to do with financial help?

[12:30]

Business Manager, Jersey Mencap:

This is when income support was very first introduced.

The Deputy of St. Ouen : Oh, right.

Business Manager, Jersey Mencap:

We had a request to help a parent with funding for a holiday and she came to the office and we had a chat and I found out at that point - and this son of the family was about 15 - she had not claimed any benefits and she has gone through the whole system and she was not claiming any benefits. It is crazy. Yes, it is almost unbelievable, and it was not until we were sitting and filling the form out together that it just ... and the difference it made was ...

The Deputy of St. Peter :

Had she tried to access benefits?

Business Manager, Jersey Mencap:

She was just: "I did not know. I did not know, Sue." So there you go. But from my understanding, income supports works as well as the person who is at the desk and that is as basic as you can get. It is as good as the person at the front of the desk.

Mr. S. Jones:

Do you have any relationship with the health services, such that on diagnosis they tell the parents: "Well, look, Jersey Mencap works in this area. Get in touch with them"?

Business Manager, Jersey Mencap:

We find we are getting more referrals from Social Services. You know, a social worker might ring up saying: "We have got this guy that might like your social club. Can you send him some information about it?" but that is at the older end, nothing sort of child-wise, very small children. But historically, we found that we get very little interest from parents. Every parent at Mont à l'Abbé School gets a copy of our Grapevine magazine. We get very little interest from parents of younger children. When they start hitting that transition age, that is when we get their interest.

The Deputy of St. Peter :

So they seem to manage quite well up until that point?

Business Manager, Jersey Mencap:

Yes, yes, and I think up until that point, most families ... although obviously there are families that still have lots of needs that are not being met and that they have to fight for things all the time. In the U.K. a lot of things would be right, but in Jersey, it is still a fight, but a lot of the parents feel that while the child is at school that things are running quite well for a lot of the parents. The panic sets in after, it is falling off a cliff. The education system is so good and that parents' expectations have been built up, they know what is out there nowadays and then the son or daughter is out of that education system and bang.

Deputy J.A. Hilton:

Can I just ask for a recap on the respite, the new house?

Yes, we have changed a bit from respite.

Deputy J.A. Hilton:

No, just to understand, so currently Les Amis owns the pair of semi-detached houses in Trinity ?

Business Manager, Jersey Mencap:

They do not own it, it is owned by the housing trust.

Deputy J.A. Hilton: Oh, those 2? Oh, right.

Business Manager, Jersey Mencap: Yes, it is owned by the housing trust.

Deputy J.A. Hilton:

Okay, and they have agreed to build another house for respite in the garden, because it is large enough?

Business Manager, Jersey Mencap: At back part of the garden, yes.

Deputy J.A. Hilton:

Right, okay. Is that the Jersey Homes Trust?

Business Manager, Jersey Mencap: It is Les Vaux.

Deputy J.A. Hilton:

Oh, right, okay. So that is in motion at the moment then?

Business Manager, Jersey Mencap:

It is in motion and I am a bit wary that I mentioned it now at a public hearing, because you are always scared that you have mentioned something before it is ready, but the other problem with respite, and I am sure that other people have said this to you, is the lack of emergency respite, and the effect that that has on the families already receiving it. I know a lot of people are very passionate about this issue. It has affected all the respite services. It has affected Oakwell; Eden House has been affected; the adult respite service has been affected and Maison Allo not so much. But I think that is one area that respite should not be precarious for families, it should be something that they can rely on. They should know that if they have got this day and this day and that in one week a year or however, that they can go on holiday, and it should not be hanging on whether or not someone or the family finds themselves in a crisis. That is not to say that the problem is not with the family in crisis at all. That family needs and deserves to get that support when they need it, but it is this fire-fighting and it is the effect it has on other people. I am not sure if when you are looking at this emergency respite issue, there needs to be joint working between Housing and Social Services and the

then need for Social Services to come up with sort of a business plan with costings saying how much it would cost. In there, it is really important that you build in the soft outcomes of emergency respite, the soft outcomes being what it did not cost you for those families that are not in crisis and they are not in crisis because they are getting their respite. That needs to be measured into any costings anybody would do about providing an emergency respite service.

The Deputy of St. Peter :

Would Mencap consider as a group sort of working with Social Services and the Department for Health to provide a residential centre or some sort of emergency centre so that there was not that impact on the existing respite services? Do you think that that might be a way forward?

Business Manager, Jersey Mencap:

In what way do you mean, do you mean funding or do you mean talking about or ...?

The Deputy of St. Peter :

Well, perhaps I do not know. I am just sort of trying to assess what is a possible way forward, I guess. So would it be perhaps that if a location was found you could develop a service level agreement to provide that, because it is our understanding of talking to other people that those in the charitable sector often have a good ... what is the word? They are well-respected as service providers, the service at Maison Allo has been spoken of very highly, for example, and those people in the sector, because there are not so many budgetary pressures, I guess.

Business Manager, Jersey Mencap:

Yes, I think we are not those type of service providers though, but Maison Allo, although it is owned by us, even when we had the service level agreement, Les Amis were managing that house for us. That is why the service level agreement is now with Les Amis. It was sort of the Social Services would pay us, then Les Amis sent us their invoices, then we pay them, so that is why the service level agreement changed. But we are not in the business of being that sort of provider. I think we would be open to working with Social Services about the provision, there is always the opportunity for Jersey Mencap if they were approached to fund something for the provision, you know, they are open to discussion, the committee there, so that there can be joint working in that way.

The Deputy of St. Peter :

Do you see that as a way forward, in your experience?

Business Manager, Jersey Mencap:

I think an emergency ... of course it opens a whole kettle of fish. It is sort of the what are you using your emergency respite for, you know, you need emergency respite for children on the autistic spectrum, you need emergency respite for children with profound and multiple disabilities and children with

learning disabilities. It is then ... you know, you do not want a cat fight over who is using the emergency respite house. So that is a challenge for you.

The Deputy of St. Ouen :

I think what Kristina was suggesting is it might be a challenge for you. [Laughter]

The Deputy of St. Peter :

Shall we negotiate? It is exactly the very difficult question though, is it not?

Business Manager, Jersey Mencap: Yes.

The Deputy of St. Peter :

What to provide for who and for how long and then how do you provide for those that have not yet entered that position, but may well need access to that provision in the future.

Business Manager, Jersey Mencap:

These children are not a surprise. You know, they should not just be a surprise: "Oh, look." They have been there all the time. They do not appear at age 7 or 8, they have been there all the time.

The Deputy of St. Peter :

Do you think there is enough access for preschoolers perhaps to gain respite? Do you think it is something that is needed?

Business Manager, Jersey Mencap:

I know Maison Allo is not until aged 4. I do not know why that is. I do not know if it is something to do with licences and registrations. It may be. I am not sure.

The Deputy of St. Ouen :

Can I ask, Mencap as an organisation, do you maintain a bit of a register of individuals that have disabilities?

Business Manager, Jersey Mencap: No.

The Deputy of St. Ouen :

So you just have a standing membership?

Business Manager, Jersey Mencap:

We have got a membership. We have a list of our social club members. We have a list of professionals, but we do not have any sort of personal details about people. We ask a few details about people in our social club. That is purely for a source of health and safety reasons and risk assessment, but ...

The Deputy of St. Ouen :

So if I asked you how many people you represent as a charity on the Island, you would struggle to tell me?

Business Manager, Jersey Mencap:

I probably would struggle to tell you, yes, yes, and it goes up and down. Some of our events we hold and we can have 120 people at them, but while those 120 people are at your event, their families and their mums and dads, siblings, everybody there, the services that work with them, that is a form of respite. You are not just supporting those 120 people that are there, you are supporting everyone else as well, so it is very difficult to say.

The Deputy of St. Peter : Thank you. Are you done?

The Deputy of St. Ouen :

Yes, there is a lot to think about.

Business Manager, Jersey Mencap: Yes, I came in with that.

The Deputy of St. Peter :

Have you managed to say everything that you wanted to say?

Business Manager, Jersey Mencap:

I  have. I  have. Just  that  the  different forms  of  respite,  you  know,  the outreach, the tea visits, the overnight stays, I think it is important that those choices remain and that no one suffers to the benefit of the others, because respite is different things to different people. A few hours is just ideal and what some families need, but for another family, they just might need that really great night's sleep. It is sort of you have to ensure that those choices are not taken away, you know, that if you provide something fabulous and a new emergency service, and the money has got to come from somewhere, where are we taking it from, you have got to try and protect those choices that are available.

The Deputy of St. Peter : Thank you very much.

Business Manager, Jersey Mencap: Thank you.

The Deputy of St. Peter :

We will close the meeting and ask the members of public to leave.

[12:43]