Themes:
1. Ambitions of independence
“To grow up and live independently. Live an independent life, gain employment and become an independent member of society.”“The whole family would like to see R get a job that he is settled in and that he enjoys. He has had part-time jobs and done volunteering in the past but this has all been short-term. A full-time permanent job would make him much more confident in himself. Also to get out and about more, meet new people, become independent, maybe one day get his own place and live on his own, to not rely on anyone and become fully independent.”
“Our ambition for F is to have a purpose in life, to get a job, have a family, a house of his own- a normal life.”
“Independence and to be working in a job that makes her happy. Running her own home, I think those are the main things… Well to be as independent as she can be, but if she is assisted and helped out a little bit that would be ok. Like her Gran was in a sheltered house, she had a flat but someone was available if she needed help. Ideally she would be independent, but something of that nature would be ok, we would see that as successful.”
“In the short term we would like to see H get paid employment. Eventually we would like to see H move into a place of his own and live an independent life. We want to see him independent and not dependent on anyone else and the first step towards that is getting employment and supporting himself.”
“I would like to see him in a full-time job and in the future, have his own place and be independent.”
“I would like to work, to go out with my friends, get a car, have my own money and learn how to manage my money.”
“I’ve always told K that she can do whatever she wants. Things may be more difficult for her but I believe that she can do anything she sets her mind to. It might take her longer than other people, but she’ll get there. I want her to have the same opportunities as everyone else- get a job, go on holiday, do whatever she wants to do. I’ve always tried to encourage her independence.”
2. Need for parental support
“There isn’t really any support for families- this is the first time anyone has asked our opinion on services. We are a close family and able to support each other and are able to support R, but what about other people out there who might not be able to? Previous support R has had has been good but it seemed to finish when he was 18 and there doesn’t seem to be a lot out there for adults. It might be different for people who are extremely disabled, but for someone like R who does have a LD but is able to work and possibly live on his own, there is not a lot of support.”“Not as much (family support)as there should be. It depends on the disability and the level of the disability. There is support but you need to go out and find it and if you are not aware of it you can struggle.”
“Looking back it (more support) would have been useful when D was growing up. A parent’s social group for support would have been good so that you could share your experiences and information, and it would make you feel like you are not alone.”
“It would have been good to have someone to support you as a parent and let you know you are doing the right thing and taking the right approach. I felt that I was so concentrated on K that in some ways I neglected my other children and I didn’t have as much time for them. Some support for me and K would have let me spend time with them all equally. Some social groups for parents in the same situation might have been good when she was younger too, so you can all get together and talk about what you are going through.”
3. Need for more information on the support available and help navigating services
“No, we got no information. We had to search for everything on our own. J is now getting Disability Living Allowance, which is great, but we just found out that she should have been getting this since she was 2 years old and she is now 20! We didn’t know and we’ve learned that we have to fight to get her all of the benefits she is entitled to. J is disadvantaged because she is disabled. The only reason she is getting all of her benefits now is because of her good family support.”
“Parents shouldn’t have to go and look for information and have to fight for help. The Local Government know that these young people have a record of need and have a LD and so they should provide parents with information, rather than parents having to look for it themselves. What if someone doesn’t have a lot of family support, or what if their parents aren’t able to do this?”
“We tried ourselves to establish contacts other than through the school, but it was difficult. We didn’t know what was going on in and around our area and it was hard to find information. There seems to be quite a big split between areas, some seem to have a lot of services and others don’t, you might have to travel. It might be our lack of knowledge, but it’s hard to find out.”
“We have had to search for everything. The information is out there but you’ve really go to look for it. Its been 4 years since R left school and apart from 2 social groups, which we found out about and organised for him to attend, the ENABLE project is the only project that have approached us offering support for R. I definitely think there should be more information and Local Government needs to do more to support families.”
“We did not get any information really. Often when your child has a disability there is not a definite pathway, you have to make one for yourself.”
Interview 1
J is a 20 year old young woman and who has a learning disability (LD) and accesses our services.
M is J’s Mum.
S is an ENABLE Scotland Employment Coordinator.
S- What would be your goals and ambitions for you/ your daughter’s adult life?
M- To grow up and live independently. Live an independent life, gain employment and become an independent member of society.
J- I want to get a job and eventually live on my own.
S- How have your goals and ambitions changed as you have grown up?
M- Goals haven’t changed but it has definitely been more challenging than I thought it would be.
S- In what way?
M- Support for people with LDs is not great. People don’t always appreciate that someone has a LD as it isn’t always obvious and so support is not always offered.
S- Can you identify any factors that have made you feel more confident in the future and empowered?
M- Family support and the EAST project (i.e. ENABLE Scotland’s supported employment project)
J- I definitely feel more confident now that I have been working with EAST, I think I will be able to get a job and do well.
S- How do you think confidence will grow?
M- J getting a job. People with LDs need to feel that they are valued members of society and that doesn’t always happen, especially when they are always doing voluntary work, they should get paid like everyone else. A job is a big part of your self-worth, you need to feel that you are doing something of value.
S- Do you think that while J was growing up, you got enough information and support from the Local Government?
M- No, we got no information. We had to search for everything on our own. J is now getting Disability Living Allowance, which is great, but we just found out that she should have been getting this since she was 2 years old and she is now 20! We didn’t know and we’ve learned that we have to fight to get her all of the benefits she is entitled to. J is disadvantaged because she is disabled. The only reason she is getting all of her benefits now is because of her good family support.
S- So you feel that the services and support the Local Government provide are lacking?
M- Yes. Parents shouldn’t have to go and look for information and have to fight for help. The Local Government know that these young people have a record of need and have a LD and so they should provide parents with information, rather than parents having to look for it themselves. What if someone doesn’t have a lot of family support, or what if their parents aren’t able to do this?
S- What support service do you feel you need as a parent?
M- Somebody to give J the skills she needs to find a job, I feel I’ve done everything I can do. Someone to make links with employers and show them that people with LDs can work and do a good job.
S- Do you think any other support service, other than ENABLE, would be able to help you with this?
M- There are other support services out there, but we often find that they are restricted by area and many services don’t operate in our area. We are really glad ENABLE has a supported employment service in East Dunbartonshire now. The Council should do more and make sure there are more services available to people and their families.
Interview 2
R is a 21 year old man and who has a learning disability (LD) and accesses our services.
K is R’s older sister.
S is an ENABLE Scotland Employment Coordinator.
S- What would be your ambitions for your/ your brother’s adult life?
K- The whole family would like to see R get a job that he is settled in and that he enjoys. He has had part-time jobs and done volunteering in the past but this has all been short-term. A full-time permanent job would make him much more confident in himself. Also to get out and about more, meet new people, become independent, maybe one day get his own place and live on his own, to not rely on anyone and become fully independent.
R- I would like to get a job that I enjoy and that I would be good at.
S- How have your ambitions/ goals changed as you have grown up?
K- We noticed that R wasn’t developing like other children, but he wasn’t diagnosed with a LD until he was a teenager. This changed our expectations in terms of his independence. He may not ever been fully independent, but that’s not to say he can’t do things for himself. He may just need more support and a bit more help than other people. From a young age he had additional support, like speech therapy from the age of 5, so this made him different from other kids.
S- Can you identify factors that have contributed to the empowerment of R?
K- The family always try to encourage him and projects like EAST seem to be helping a lot. R wouldn’t do these things, like trying to find a job, on his own. Its not that he doesn’t want to, it’s just that if he is unsure about something, or his ability to achieve something, even if its something he really wants, he will tend to shy away from it. But when he sees he is capable he gets so much more confidence. For example he now travels on his own, volunteers 2 days a week and is working towards getting a job with the EAST project. He is taking part in group work and his confidence with other people is growing a lot.
R- Yes I never used to like groups and I never would go to any. Sometimes I still feel shy around other people, but I know I can do it so I just get on with it. I am getting more confident.
S- Have you ever received any information from Local Government on services for people with LDs?
K- No we have had to search for everything. The in formation is out there but you’ve really go to look for it. Its been 4 years since R left school and apart from 2 social groups, which we found out about and organised for him to attend, the ENABLE project is the only project that have approached us offering support for R. I definitely think there should be more information and Local Government needs to do more to support families.
R- I agree, nobody else has approached me to offer support. I would have to find out on my own and it’s hard to know where to look.
S- In terms of the family support out there, do you think it is accessible/ is there enough?
K- There isn’t really any support for families. This is the first time anyone has asked our opinion on services. We are a close family and able to support each other and are able to support R, but what about other people out there who might not be able to? Previous support R has had has been good but it seemed to finish when he was 18 and there doesn’t seem to be a lot out there for adults. It might be different for people who are extremely disabled, but for someone like R who does have a LD but is able to work and possibly live on his own, there is not a lot of support.
Interview 3
A is a 19 year old man and who has a learning disability (LD) and accesses our services.
F is A’s Mum
S is an ENABLE Scotland Employment Coordinator.
S- What are your ambitions for your/ your son’s life?
F- Our ambition for F is to have a purpose in life, to get a job, have a family, a house of his own- a normal life.
S- Have your ambitions changed as A has grown up?
F- Yes, a lot. I didn’t realise how difficult it would be. He is so different from his siblings and he feels like he is being left behind in what he will be able to achieve and what he will be able to do. His siblings are independent, achieving at school and learning to drive. A can’t do this and it hurt him a lot and it hurts me to see him hurt. We have had to change our expectations for A and this has been challenging for the family and for A
S- What factors have contributed to A’s empowerment?
F- Lots of family encouragement and other organisations have made A more positive about himself and his future. A needs a lot of support.
S- Do you think that as A has gotten older he has become more independent?
F- He is more independent and can travel on his own now, but I worry that he may get into trouble with other people. He is very trusting and people with LDs can be vulnerable to abuse.
S- Did you get information and support from the Local Government when A was growing up?
F- There is a lot of information written down if you want to look at it, but I have struggled to have it delivered.
S- Do you think there is enough support for families?
F- Not as much as there should be. It depends on the disability and the level of the disability. There is support but you need to go out and find it and if you are not aware of it you can struggle.
S- How have you managed to find support? Was it you that had to go and find it?
F-Yes, I had to find out from other people in similar situations.
S- So information and support is not openly available?
F- No. You read about it in the media and in papers, but in practise it is not always delivered that way and it is always a struggle to find it.
S- What would you change if you could?
F- As soon as a child is diagnosed or identified as having a LD that child should have a keyworker, so that support is always there. 1 person for the rest of their life is possible, or at least 1 service, involved throughout the individual’s life.
S- What support service do you feel you would need as a parent?
F- Help to make A more independent and getting help to get him the right support is most important.
Interview 4
H is a 19 year old woman and who has a learning disability (LD) and accesses our services.
G is H’s Dad
L is H’s Mum
D is an ENABLE Scotland Employment Coordinator.
D- What are your ambitions for your/ H’s adult life?
G- Independence
L- Yes, independence and to be working in a job that makes her happy. Running her own home, I think those are the main things.
D- So what does independence mean to you?
G- Well to be as independent as she can be, but if she is assisted and helped out a little bit that would be ok. Like her Gran was in a sheltered house, she had a flat but someone was available if she needed help. Ideally she would be independent, but something of that nature would be ok, we would see that as successful.
L- Already H is quite an independent traveller, she goes out on her own and can change buses and trains fine. So for her to live own her own, by herself, shop and cook for herself, tidy for herself, that’s what we want for her. Just to be like anyone else her age and look after herself, with support if she needs it.
D- What do you think H, would you like to stay on your own?
H- Yes I would. I thought I’d like to stay locally so that I can be near my friends and family. I would like to stay on my own and get a job.
D- And you would get good family support.
L- Yes, we would be happy to visit her a lot and help out with shopping and cleaning. She would get the same help as her brother and sister get. Maybe she would need a bit more help with money and bills.
G- We don’t want to chuck her out the house (laughs)! She is welcome to stay, we like having her here and she likes being here, but realistically in the future she will want to move.
D-Talking about those ambitions and what you would like to see in the future, has that changed since H was born?
L- It has probably always been our goal.
G- Yes, it has gotten obvious as she has gotten older that this goal could be achievable. When she was younger we were not sure if she would be able to do these things, but the help we have had from social work has been good.
L- Things have changed as she has grown up, as we have discussed what she can do and what she might find not son easy, so its been a constantly changing thing, for example, deciding whether or not to send her to mainstream school or not, we’ve had to adapt.
D- Have your ambitions changed H, did you always want a job?
H- Yes, I’d love to get a job in a theatre.
D- Can you identify any factors that have contributed to the empowerment of H?
L- Social work has been good recently and her special school. They always encouraged us to push H a bit and think about what she can do, not what she can’t do.
G- H can do a lot and sometimes you think is it right that we sent her to a special school? Would she have done better in mainstream?
D- Did you have any assistance in making that decision?
L- It really came down to us. We had a bit of a struggle initially because we realised about H’s hearing loss. We struggled to get her hearing aids. The local children’s hospital did not want to give her hearing aids. It was the educational psychologist who really pushed it and said this child needs hearing aids and this made a huge difference.
D- What age were you then H?
H- I was 5.
L- Yes she was very young. Before that she had been in a language unit at nursery and nobody realised that she couldn’t hear what was going on around her, but once we got the hearing aids the educational psychologist was no help at all- zero! The school was great though.
D- What about since leaving school, what help have you had?
L- The social work service has been good
G- It’s a difficult transition out of school, but I think social work have realised that it’s a difficult time and have organised reviews. The occupational therapist was helpful also in encouraging H to become independent and travel on her own. Social work also put her in touch with social groups. Enable’s new supported employment project has also been great and H is loving it.
D- Did you find it easy to get information from the Local Government about services for young people with disabilities and their parents?
G- Not directly no, once H was at school there was help but not really before.
L- We tried ourselves to establish contacts other than through the school, but it was difficult. We didn’t know what was going on in and around our area and it was hard to find information. There seems to be quite a big split between areas, some seem to have a lot of services and others don’t, you might have to travel. It might be our lack of knowledge, but its hard to find out.
G- Often the frustration is that we have to run H to services outwith this area and this can be quite costly and take up a lot of time. H can travel on her own, but often buses don’t run at night.
D- As parents, what support did you get, or continue to get?
L- A lot of support from the school, lots of contact. Not so much with college. We have always really done it ourselves.
D- Do you meet with other parents? Are there support groups?
G- We bump into other parents when dropping H off at groups, but there are no parent groups and we never arranged anything like that.
D- Do you think parent support groups would be useful?
L- Yes, its something we would’ve definitely found useful.
D- What other services do you think would be useful that weren’t there?
G- I feel that there should be more support available around employment for H. H’s ambition is to gain employment and be independent. Enable’s project is very new and we are very glad its been set up, as the service is badly needed. You hear a lot from the Government about getting disabled people into employment, but in actual fact there is little inn action. Lots of talk and zero action.
H- I feel that the Government are not interested in me.
G- That’s certainly the way it feels H, but I think they are.
H- They don’t care and employers are not interested either. They don’t want to know me.
Interview 5
I is a 23 year old man and who has a learning disability (LD) and accesses our services.
J is I’s Dad
D is an ENABLE Scotland Employment Coordinator.
D- Could you start by discussing the issues you have had growing up I?
I – I’ve got speech and language difficulties and I didn’t speak until I was 7. I have a speech therapist and I’ve had this help since I was a wee boy and all throughout school. She comes out to help me at home.
D- What are your ambitions for your/ your son’s adult life?
J- From the start we knew that there was a developmental disability as we saw I’s progress. Our pact with I is that we will support him in what he wants to do. We aren’t ambitious in the sense that we have particular goals for I. He has been to college and has achieved the level of qualifications that he can, but now we see that he definitely needs to work, like other people his age. He needs to experience the working environment. We want him to get work that is paid appropriately. But we realise the difficulties of the working market for people with difficulties. But its not just money you get from work, its meaning and value.
D- Do you share that ambition for yourself I?
I – I do want to work yes.
D- What about passed that, once you are in work?
I – I would like to live on my own, in my own house and have a family and if I was working I would like that. I would like to work in sport. I volunteer at a sport club for people with disabilities and I really enjoy it.
J- As parents we se the opportunities you get from being in employment and the independence it brings as being very important.
D- How, if at all, have your ambitions changed for I over time?
J- They have changed a lot. To begin with he couldn’t talk or relate to people at all. He couldn’t understand the world and was in a very bad place. So we had to change our path in life for the whole family, e.g. to the types of holidays we could go on. We don’t have a path laid out for I or goals for him. His path will be how he wants it to be and where he wants it to go. Our ambition is to open up opportunities for I to find his own path. If he wants his own place, family and job we will try and help him to achieve it.
D- Can you identify factors that have contributed to your empowerment I?
I – I’ve had a speech therapist for a long time, all throughout school. The school teachers were very encouraging throughout my whole school life and have helped me to develop a lot. My volunteering role at the sports club run by the Council has allowed me to meet a lot of people and they encourage me with my coaching.
D- What about from your point of view J? What people or services do you think have contributed to I’s development and empowerment?
J- Its hard to not be overprotective and let people in who can help. We had a lot of help from school, and now ENABLE.
D- Do you feel that you got enough information from the Local Government about services for young people with disabilities and their parents? Both now and growing up?
J- We did not get any information really. Often when your child has a disability there is not a definite pathway, you have to make one for yourself.
D- What about services for parents?
J- I don’t know if the Government should do more, but a bit more support for parents would have been useful. We think our area is good for education and the Council is particularly focused on education here which is good, but I would say that when you leave education there is not as much for people, they are very focused up until the end of education. We are lucky that we are close to Glasgow and there are lots of services, groups and activities there, but you often have to pay and that can be expensive.
D- What support services do you think you need, or you may have found useful while I was going up, that currently don’t exist?
J- Friendship groups would have been helpful as it can be very difficult growing up with a speech and language issue and if you cant communicate like everyone else.
I – I would agree, that would have been good.
D- What about information about education or employment?
J- If you have got disabilities it can be very difficult to find a job. People need help to get ready for work and find a job.
Interview 6
C is a 20 year old man and who has a learning disability (LD) and accesses our services.
D is C’s Mum
E is an ENABLE Scotland Employment Coordinator.
E- What are your ambitions for your son’s adult life?
D- To get a job and get on in life. For him to be happy.
E- How have your ambitions changed since C was born?
D- He didn’t like school at all. He was just left and had no interaction with anyone else and nobody could encourage him, he would just go away himself. My ambitions for him to get a job and be happy have never changed.
E- Can you identify factors that have contributed to the empowerment of C?
D- Having a friend that brightens him up. He didn’t have a friend at school, but since leaving he has found one that he met through a club. It was a football club set up by the council so young people can socialise through sport.
E- Do you get information, or have you ever gotten information, from the Local Government about services for young people who have disabilities and their parents?
D- No, we used to get some social work involvement when he was a child, but we haven’t had any involvement from social work in a long time. C has a keyworker (Local Area Coordinator) and this has made a big difference. He talks to him like an individual, on his level and he has a laugh with him. Its important to have services like this.
E- What about you D? What support have you had?
D- Nothing
E- Do you think you need support? Or would it have been helpful?
D- Yes, some people struggle, but I have a lot of good friends. But if you don’t have anyone it could be very hard. Social groups or coffee mornings for parents could help, so that you could meet with people in the same situation and help each other etc. and more information would be good.
E- Overall do you feel that C has had the right kind of support?
D- No
E-What’s been lacking do you think?
D- Education. At exam times, kids like C who are not academic enough to sit exams are still off for 4 weeks which isn’t right, they should still be at school and learning.
E- What services do you think would be useful now for C’s future?
D- Ones that are more understanding. More people like keyworkers (LACs) as they help a lot.
E- What are your fears for the future?
D- C’s keyworker is retiring and will be replaced with someone else and this could be a difficult change for C. People in schools need more training so they understand and can support children with disabilities. It is not right that kids who are not so academic are left to the side and the ones that are get everything.
Interview 7
H is a 19 year old man and who has a learning disability (LD) and accesses our services.
S is H’s older sister.
D is an ENABLE Scotland Employment Coordinator.
D- What are your ambitions for your/ your brother’s adult life?
H- To get a job and get paid. I would like to get my own home eventually
S- In the short term we would like to see H get paid employment. Eventually we would like to see H move into a place on his own and live an independent life. We want to see him independent and not dependent on anyone else and the first step towards that is getting employment and supporting himself. Also to do things that he enjoys, have hobbies and interest and have a family of his own.
D- Do you think that those ambitions for H have changed as he has grown up?
S- I think they are pretty standard life goals that everyone has. To grow up, become independent, have friends and family and a network of people to socialise with. The whole family want that for him. I would add to that that we didn’t always know if it would be possible for H to achieve these goals, but it has become obvious that this is a real possibility for H. we always hoped for this for H, but now we have seen that it is realistic and achievable.
D- What about you H, have your goals changed.
H- No, I have always wanted to work.
D- What factors have contributed to H’s empowerment?
H- I had a language therapist growing up and she helped me. She helped me to get other services involved when I was younger, social work and autism specialists. My social worker and LAC also helped me a lot. They helped me to become independent and travel on my own. This means a lot, I can go out on my own and meet my friends. I used to go to ENABLE’s youth group and now I am on their employment project and they help me develop my skills and are helping me look for a job. The disability employment advisor at the Job Centre was helpful too.
S- Yes she recommended different benefits H could apply for and helped him with his application. When H was growing up the social worker and LAC were very helpful, we felt that they went beyond their remit to help H.
D- Do you feel that you got enough information from the Local Government about support services for people with disabilities and their families?
H- My Mum had to look for help for me.
S- I don’t think things were offered when H was growing up, Mum had to go out and find help. We feel that we got the right support, but we had to go out and find it. ENABLE recently offered H employment support and that’s been good.
D- How did you get involved with ENABLE originally?
H- They came into my school and told us about a youth group, I started going to that so they knew me and when the employment project started they thought it would be good for me.
D- So H do you feel that you get enough information about the services that are out there?
H- Yes, sometimes.
D- What support services do you think you need, H as an individual, and as a family, that maybe aren’t there?
S- The LAC and social work support was great when H was growing up, but they haven’t been able to offer much support now that H is an adult and so more adult support services like these would be useful. Now that he is an adult they seem to have forgotten about him. H is lucky as he has a lot of family support, but other people might not be in the same position. Some people like H might look like they are ok and coping ok, but they still need support and who is there to do it?
Interview 8
D is a 21 year old man and who has a learning disability (LD) and accesses our services.
M is D’s Mum
E is an ENABLE Scotland Employment Coordinator.
E- What are your ambitions for your/ your son’s adult life?
M- I would like to see him in a full-time job and in the future, have his own place and be independent.
D- I would like to work, to go out with my friends, get a car, have my own money and learn how to manage my money.
M- Yes, I have to help him with his money and look after it for him so if he could do that himself that would be really good- he needs to do that on his own in the future. Just to be happy and settle in life, to contribute to society and grow his self-esteem. Get a job he enjoys, handle his own money and contribute to society.
E- Have your ambitions changed for D as he had grown up?
M- D has 2 older brothers and I have never compared them, but growing up I noticed that D was slow to speak. I highlighted this to the health visitor and we took him to a speech therapist. He went to play group, nursery and mainstream school. We became aware that his reading and writing were not progressing the way we thought it should. We spoke to the school, but they said that they didn’t think it was anything to worry about. We had to keep pushing and pushing. We fought for his to be seen by an educational psychologist and eventually they agreed, but the only reason I knew to ask for this is because someone mentioned it to me when I was talking about D to them in the dentist waiting room! The educational psychologist saw him and helped him a bit throughout school, but they cannot be there all of the time. We fought for his to be seen by specialists including a clinical psychologist, paediatrician, dietician, occupational therapist, speech therapist and psychiatrist. Eventually in primary school he was diagnosed with autism. By the time he was going to high school we were given every assurance that the learning support unit in school would have everything in place to meet D’s educational needs. But this didn’t happen and high school was a nightmare for him, it was dreadful. The educational psychologist even said to me- “it’s like this, a little bit of your son’s brain doesn’t work properly”, I was so angry, I hated that attitude. D hated school and left with practically no qualifications and he couldn’t wait to leave. After he left school he became a totally different person with a totally different attitude to life. There was nothing at school to meet his needs, we did all that we could but the school couldn’t help him. He couldn’t cope with school.
D- They didn’t give me the support I wanted. I had problems and difficulties and it would take me a while to do things and I was slow, so the teacher would say that I had to stay behind in school to finish my work and so I started to get a more negative attitude towards school. Eventually I just didn’t want to be there and I gave up. After I left school I went to college and I started to enjoy it.
M- D is very capable of holding down a job. I just want someone to give him a chance. I want him to be happy.
E- You’ve obviously had a lot of input from different services and specialists, is there any in particular that have contributed to D’s empowerment?
M- The supported employment project he is involved in now is great and overall I have been happy with the support he had gotten post-school, from the Job centre, social work and ENABLE, but at while D was at school it was awful. When D got older and we had a discussion with school about whether he should stay on for another year or not, the head teacher say “Absolutely not, we have nothing to offer him here.”
E- What about you M, have you had any information from Local Government about what services are available for young people with disabilities and their families?
M- No not directly, I’ve not been given any information I’ve had to look for all of the support we have had.
E- Have you have any support for yourself M, or the family?
M- No.
E- Do you think that it is something that is needed?
M- I think so, yes. Looking back it would have been useful when D was growing up. A parent’s social group for support would have been good so that you could share your experiences and information, and it would make you feel like you are not alone.
Interview 9
K is a 21 year old woman and who has a learning disability (LD) and accesses our services.
P is K’s Mum
E is an ENABLE Scotland Employment Coordinator.
E- What ambitions do you have for you/ your daughter’s adult life?
P- I’ve always told K that she can do whatever she wants. Things may be more difficult for her but I believe that she can do anything she sets her mind to. It might take her longer than other people, but she’ll get there. I want her to have the same opportunities as everyone else- get a job, go on holiday, do whatever she wants to do. I’ve always tried to encourage her independence.
E- Have your ambitions changed since K was born?
P- Its changed how I se the difference in her. When she was at primary school they always told me that she would never do what other kids would do. They said that she would always be different from everyone else. We’ve always encouraged K though and told her that she can do things and she is becoming more independent and willing to try new things.
E- Can you identify any factors contributing to K’s empowerment?
P- I think a lot of it came from her and her drive ton do things on her own. She has had a lot of family support. She had separate classes to help support her at school, an educational psychologist and speech therapist. In high school she was put in separate classes with kids with behavioural problems and K never had any behaviour problems at all. So other kids were misbehaving around her and she was frightened to speak up. I think she shouldn’t have been in that class, it was very difficult for her and the school didn’t do enough to support her. She was quiet and well behaved and got lost in the background. At college she struggled, but she didn’t want any extra help or to be seen as different and so she didn’t tell them about her learning disability and she didn’t get support. We tried to encourage her to ask for help, but she wouldn’t. she was very stressed and struggled a lot, and she used to stay up working all night, but she passed and graduated and we are so proud of her. K has really empowered herself. K and the family, not really any outside agencies.
E- Have you ever had any information from the Local Government about services for young people with disabilities and their families?
P- We’ve had nothing at all. Since K left school we’ve had no help.
E- What about in formation about social groups or anything?
P- No, nothing.
E- What about you P, have you been offered support as a parent?
P- No
E- Do you think it’s needed?
P- Yes it would have been good to have someone to support you as a parent and let you know you are doing the right thing and taking the right approach. I felt that I was so concentrated on K that in some ways I neglected my other children and I didn’t have as much time for them. Some support for me and K would have let me spend time with them all equally. Some social groups for parents in the same situation might have been good when she was younger too, so you can all get together and talk about what you are going through.
E- Can you think of any support that you might need now or in the future?
P- I think K needs more support than other people so that she can understand. She went to the Job Centre and they spoke to her as if she hasn’t tried to find work and like she doesn’t care, but it’s because she struggles. They are offering her jobs that there is no way that she would actually be able to do and she gets really stressed. More help and understanding from the Job Centre would be good, and more help filling in forms and applying for benefits etc. there is very little support for adults. A keyworker, or support worker maybe that can help her fill out forms and simplify things for her. I worry that she won’t get a job due to her problems communicating and that employers wont understand.
K- Yes, my friends and boyfriend have helped me before but hey aren’t there all of the time. I want an employer to take a chance on me. It would help if there was someone who could be there more often to support me.
“Parents shouldn’t have to go and look for information and have to fight for help. The Local Government know that these young people have a record of need and have a LD and so they should provide parents with information, rather than parents having to look for it themselves. What if someone doesn’t have a lot of family support, or what if their parents aren’t able to do this?”
“We tried ourselves to establish contacts other than through the school, but it was difficult. We didn’t know what was going on in and around our area and it was hard to find information. There seems to be quite a big split between areas, some seem to have a lot of services and others don’t, you might have to travel. It might be our lack of knowledge, but it’s hard to find out.”
“We have had to search for everything. The information is out there but you’ve really go to look for it. Its been 4 years since R left school and apart from 2 social groups, which we found out about and organised for him to attend, the ENABLE project is the only project that have approached us offering support for R. I definitely think there should be more information and Local Government needs to do more to support families.”
“We did not get any information really. Often when your child has a disability there is not a definite pathway, you have to make one for yourself.”
Interview 1
J is a 20 year old young woman and who has a learning disability (LD) and accesses our services.
M is J’s Mum.
S is an ENABLE Scotland Employment Coordinator.
S- What would be your goals and ambitions for you/ your daughter’s adult life?
M- To grow up and live independently. Live an independent life, gain employment and become an independent member of society.
J- I want to get a job and eventually live on my own.
S- How have your goals and ambitions changed as you have grown up?
M- Goals haven’t changed but it has definitely been more challenging than I thought it would be.
S- In what way?
M- Support for people with LDs is not great. People don’t always appreciate that someone has a LD as it isn’t always obvious and so support is not always offered.
S- Can you identify any factors that have made you feel more confident in the future and empowered?
M- Family support and the EAST project (i.e. ENABLE Scotland’s supported employment project)
J- I definitely feel more confident now that I have been working with EAST, I think I will be able to get a job and do well.
S- How do you think confidence will grow?
M- J getting a job. People with LDs need to feel that they are valued members of society and that doesn’t always happen, especially when they are always doing voluntary work, they should get paid like everyone else. A job is a big part of your self-worth, you need to feel that you are doing something of value.
S- Do you think that while J was growing up, you got enough information and support from the Local Government?
M- No, we got no information. We had to search for everything on our own. J is now getting Disability Living Allowance, which is great, but we just found out that she should have been getting this since she was 2 years old and she is now 20! We didn’t know and we’ve learned that we have to fight to get her all of the benefits she is entitled to. J is disadvantaged because she is disabled. The only reason she is getting all of her benefits now is because of her good family support.
S- So you feel that the services and support the Local Government provide are lacking?
M- Yes. Parents shouldn’t have to go and look for information and have to fight for help. The Local Government know that these young people have a record of need and have a LD and so they should provide parents with information, rather than parents having to look for it themselves. What if someone doesn’t have a lot of family support, or what if their parents aren’t able to do this?
S- What support service do you feel you need as a parent?
M- Somebody to give J the skills she needs to find a job, I feel I’ve done everything I can do. Someone to make links with employers and show them that people with LDs can work and do a good job.
S- Do you think any other support service, other than ENABLE, would be able to help you with this?
M- There are other support services out there, but we often find that they are restricted by area and many services don’t operate in our area. We are really glad ENABLE has a supported employment service in East Dunbartonshire now. The Council should do more and make sure there are more services available to people and their families.
Interview 2
R is a 21 year old man and who has a learning disability (LD) and accesses our services.
K is R’s older sister.
S is an ENABLE Scotland Employment Coordinator.
S- What would be your ambitions for your/ your brother’s adult life?
K- The whole family would like to see R get a job that he is settled in and that he enjoys. He has had part-time jobs and done volunteering in the past but this has all been short-term. A full-time permanent job would make him much more confident in himself. Also to get out and about more, meet new people, become independent, maybe one day get his own place and live on his own, to not rely on anyone and become fully independent.
R- I would like to get a job that I enjoy and that I would be good at.
S- How have your ambitions/ goals changed as you have grown up?
K- We noticed that R wasn’t developing like other children, but he wasn’t diagnosed with a LD until he was a teenager. This changed our expectations in terms of his independence. He may not ever been fully independent, but that’s not to say he can’t do things for himself. He may just need more support and a bit more help than other people. From a young age he had additional support, like speech therapy from the age of 5, so this made him different from other kids.
S- Can you identify factors that have contributed to the empowerment of R?
K- The family always try to encourage him and projects like EAST seem to be helping a lot. R wouldn’t do these things, like trying to find a job, on his own. Its not that he doesn’t want to, it’s just that if he is unsure about something, or his ability to achieve something, even if its something he really wants, he will tend to shy away from it. But when he sees he is capable he gets so much more confidence. For example he now travels on his own, volunteers 2 days a week and is working towards getting a job with the EAST project. He is taking part in group work and his confidence with other people is growing a lot.
R- Yes I never used to like groups and I never would go to any. Sometimes I still feel shy around other people, but I know I can do it so I just get on with it. I am getting more confident.
S- Have you ever received any information from Local Government on services for people with LDs?
K- No we have had to search for everything. The in formation is out there but you’ve really go to look for it. Its been 4 years since R left school and apart from 2 social groups, which we found out about and organised for him to attend, the ENABLE project is the only project that have approached us offering support for R. I definitely think there should be more information and Local Government needs to do more to support families.
R- I agree, nobody else has approached me to offer support. I would have to find out on my own and it’s hard to know where to look.
S- In terms of the family support out there, do you think it is accessible/ is there enough?
K- There isn’t really any support for families. This is the first time anyone has asked our opinion on services. We are a close family and able to support each other and are able to support R, but what about other people out there who might not be able to? Previous support R has had has been good but it seemed to finish when he was 18 and there doesn’t seem to be a lot out there for adults. It might be different for people who are extremely disabled, but for someone like R who does have a LD but is able to work and possibly live on his own, there is not a lot of support.
Interview 3
A is a 19 year old man and who has a learning disability (LD) and accesses our services.
F is A’s Mum
S is an ENABLE Scotland Employment Coordinator.
S- What are your ambitions for your/ your son’s life?
F- Our ambition for F is to have a purpose in life, to get a job, have a family, a house of his own- a normal life.
S- Have your ambitions changed as A has grown up?
F- Yes, a lot. I didn’t realise how difficult it would be. He is so different from his siblings and he feels like he is being left behind in what he will be able to achieve and what he will be able to do. His siblings are independent, achieving at school and learning to drive. A can’t do this and it hurt him a lot and it hurts me to see him hurt. We have had to change our expectations for A and this has been challenging for the family and for A
S- What factors have contributed to A’s empowerment?
F- Lots of family encouragement and other organisations have made A more positive about himself and his future. A needs a lot of support.
S- Do you think that as A has gotten older he has become more independent?
F- He is more independent and can travel on his own now, but I worry that he may get into trouble with other people. He is very trusting and people with LDs can be vulnerable to abuse.
S- Did you get information and support from the Local Government when A was growing up?
F- There is a lot of information written down if you want to look at it, but I have struggled to have it delivered.
S- Do you think there is enough support for families?
F- Not as much as there should be. It depends on the disability and the level of the disability. There is support but you need to go out and find it and if you are not aware of it you can struggle.
S- How have you managed to find support? Was it you that had to go and find it?
F-Yes, I had to find out from other people in similar situations.
S- So information and support is not openly available?
F- No. You read about it in the media and in papers, but in practise it is not always delivered that way and it is always a struggle to find it.
S- What would you change if you could?
F- As soon as a child is diagnosed or identified as having a LD that child should have a keyworker, so that support is always there. 1 person for the rest of their life is possible, or at least 1 service, involved throughout the individual’s life.
S- What support service do you feel you would need as a parent?
F- Help to make A more independent and getting help to get him the right support is most important.
Interview 4
H is a 19 year old woman and who has a learning disability (LD) and accesses our services.
G is H’s Dad
L is H’s Mum
D is an ENABLE Scotland Employment Coordinator.
D- What are your ambitions for your/ H’s adult life?
G- Independence
L- Yes, independence and to be working in a job that makes her happy. Running her own home, I think those are the main things.
D- So what does independence mean to you?
G- Well to be as independent as she can be, but if she is assisted and helped out a little bit that would be ok. Like her Gran was in a sheltered house, she had a flat but someone was available if she needed help. Ideally she would be independent, but something of that nature would be ok, we would see that as successful.
L- Already H is quite an independent traveller, she goes out on her own and can change buses and trains fine. So for her to live own her own, by herself, shop and cook for herself, tidy for herself, that’s what we want for her. Just to be like anyone else her age and look after herself, with support if she needs it.
D- What do you think H, would you like to stay on your own?
H- Yes I would. I thought I’d like to stay locally so that I can be near my friends and family. I would like to stay on my own and get a job.
D- And you would get good family support.
L- Yes, we would be happy to visit her a lot and help out with shopping and cleaning. She would get the same help as her brother and sister get. Maybe she would need a bit more help with money and bills.
G- We don’t want to chuck her out the house (laughs)! She is welcome to stay, we like having her here and she likes being here, but realistically in the future she will want to move.
D-Talking about those ambitions and what you would like to see in the future, has that changed since H was born?
L- It has probably always been our goal.
G- Yes, it has gotten obvious as she has gotten older that this goal could be achievable. When she was younger we were not sure if she would be able to do these things, but the help we have had from social work has been good.
L- Things have changed as she has grown up, as we have discussed what she can do and what she might find not son easy, so its been a constantly changing thing, for example, deciding whether or not to send her to mainstream school or not, we’ve had to adapt.
D- Have your ambitions changed H, did you always want a job?
H- Yes, I’d love to get a job in a theatre.
D- Can you identify any factors that have contributed to the empowerment of H?
L- Social work has been good recently and her special school. They always encouraged us to push H a bit and think about what she can do, not what she can’t do.
G- H can do a lot and sometimes you think is it right that we sent her to a special school? Would she have done better in mainstream?
D- Did you have any assistance in making that decision?
L- It really came down to us. We had a bit of a struggle initially because we realised about H’s hearing loss. We struggled to get her hearing aids. The local children’s hospital did not want to give her hearing aids. It was the educational psychologist who really pushed it and said this child needs hearing aids and this made a huge difference.
D- What age were you then H?
H- I was 5.
L- Yes she was very young. Before that she had been in a language unit at nursery and nobody realised that she couldn’t hear what was going on around her, but once we got the hearing aids the educational psychologist was no help at all- zero! The school was great though.
D- What about since leaving school, what help have you had?
L- The social work service has been good
G- It’s a difficult transition out of school, but I think social work have realised that it’s a difficult time and have organised reviews. The occupational therapist was helpful also in encouraging H to become independent and travel on her own. Social work also put her in touch with social groups. Enable’s new supported employment project has also been great and H is loving it.
D- Did you find it easy to get information from the Local Government about services for young people with disabilities and their parents?
G- Not directly no, once H was at school there was help but not really before.
L- We tried ourselves to establish contacts other than through the school, but it was difficult. We didn’t know what was going on in and around our area and it was hard to find information. There seems to be quite a big split between areas, some seem to have a lot of services and others don’t, you might have to travel. It might be our lack of knowledge, but its hard to find out.
G- Often the frustration is that we have to run H to services outwith this area and this can be quite costly and take up a lot of time. H can travel on her own, but often buses don’t run at night.
D- As parents, what support did you get, or continue to get?
L- A lot of support from the school, lots of contact. Not so much with college. We have always really done it ourselves.
D- Do you meet with other parents? Are there support groups?
G- We bump into other parents when dropping H off at groups, but there are no parent groups and we never arranged anything like that.
D- Do you think parent support groups would be useful?
L- Yes, its something we would’ve definitely found useful.
D- What other services do you think would be useful that weren’t there?
G- I feel that there should be more support available around employment for H. H’s ambition is to gain employment and be independent. Enable’s project is very new and we are very glad its been set up, as the service is badly needed. You hear a lot from the Government about getting disabled people into employment, but in actual fact there is little inn action. Lots of talk and zero action.
H- I feel that the Government are not interested in me.
G- That’s certainly the way it feels H, but I think they are.
H- They don’t care and employers are not interested either. They don’t want to know me.
Interview 5
I is a 23 year old man and who has a learning disability (LD) and accesses our services.
J is I’s Dad
D is an ENABLE Scotland Employment Coordinator.
D- Could you start by discussing the issues you have had growing up I?
I – I’ve got speech and language difficulties and I didn’t speak until I was 7. I have a speech therapist and I’ve had this help since I was a wee boy and all throughout school. She comes out to help me at home.
D- What are your ambitions for your/ your son’s adult life?
J- From the start we knew that there was a developmental disability as we saw I’s progress. Our pact with I is that we will support him in what he wants to do. We aren’t ambitious in the sense that we have particular goals for I. He has been to college and has achieved the level of qualifications that he can, but now we see that he definitely needs to work, like other people his age. He needs to experience the working environment. We want him to get work that is paid appropriately. But we realise the difficulties of the working market for people with difficulties. But its not just money you get from work, its meaning and value.
D- Do you share that ambition for yourself I?
I – I do want to work yes.
D- What about passed that, once you are in work?
I – I would like to live on my own, in my own house and have a family and if I was working I would like that. I would like to work in sport. I volunteer at a sport club for people with disabilities and I really enjoy it.
J- As parents we se the opportunities you get from being in employment and the independence it brings as being very important.
D- How, if at all, have your ambitions changed for I over time?
J- They have changed a lot. To begin with he couldn’t talk or relate to people at all. He couldn’t understand the world and was in a very bad place. So we had to change our path in life for the whole family, e.g. to the types of holidays we could go on. We don’t have a path laid out for I or goals for him. His path will be how he wants it to be and where he wants it to go. Our ambition is to open up opportunities for I to find his own path. If he wants his own place, family and job we will try and help him to achieve it.
D- Can you identify factors that have contributed to your empowerment I?
I – I’ve had a speech therapist for a long time, all throughout school. The school teachers were very encouraging throughout my whole school life and have helped me to develop a lot. My volunteering role at the sports club run by the Council has allowed me to meet a lot of people and they encourage me with my coaching.
D- What about from your point of view J? What people or services do you think have contributed to I’s development and empowerment?
J- Its hard to not be overprotective and let people in who can help. We had a lot of help from school, and now ENABLE.
D- Do you feel that you got enough information from the Local Government about services for young people with disabilities and their parents? Both now and growing up?
J- We did not get any information really. Often when your child has a disability there is not a definite pathway, you have to make one for yourself.
D- What about services for parents?
J- I don’t know if the Government should do more, but a bit more support for parents would have been useful. We think our area is good for education and the Council is particularly focused on education here which is good, but I would say that when you leave education there is not as much for people, they are very focused up until the end of education. We are lucky that we are close to Glasgow and there are lots of services, groups and activities there, but you often have to pay and that can be expensive.
D- What support services do you think you need, or you may have found useful while I was going up, that currently don’t exist?
J- Friendship groups would have been helpful as it can be very difficult growing up with a speech and language issue and if you cant communicate like everyone else.
I – I would agree, that would have been good.
D- What about information about education or employment?
J- If you have got disabilities it can be very difficult to find a job. People need help to get ready for work and find a job.
Interview 6
C is a 20 year old man and who has a learning disability (LD) and accesses our services.
D is C’s Mum
E is an ENABLE Scotland Employment Coordinator.
E- What are your ambitions for your son’s adult life?
D- To get a job and get on in life. For him to be happy.
E- How have your ambitions changed since C was born?
D- He didn’t like school at all. He was just left and had no interaction with anyone else and nobody could encourage him, he would just go away himself. My ambitions for him to get a job and be happy have never changed.
E- Can you identify factors that have contributed to the empowerment of C?
D- Having a friend that brightens him up. He didn’t have a friend at school, but since leaving he has found one that he met through a club. It was a football club set up by the council so young people can socialise through sport.
E- Do you get information, or have you ever gotten information, from the Local Government about services for young people who have disabilities and their parents?
D- No, we used to get some social work involvement when he was a child, but we haven’t had any involvement from social work in a long time. C has a keyworker (Local Area Coordinator) and this has made a big difference. He talks to him like an individual, on his level and he has a laugh with him. Its important to have services like this.
E- What about you D? What support have you had?
D- Nothing
E- Do you think you need support? Or would it have been helpful?
D- Yes, some people struggle, but I have a lot of good friends. But if you don’t have anyone it could be very hard. Social groups or coffee mornings for parents could help, so that you could meet with people in the same situation and help each other etc. and more information would be good.
E- Overall do you feel that C has had the right kind of support?
D- No
E-What’s been lacking do you think?
D- Education. At exam times, kids like C who are not academic enough to sit exams are still off for 4 weeks which isn’t right, they should still be at school and learning.
E- What services do you think would be useful now for C’s future?
D- Ones that are more understanding. More people like keyworkers (LACs) as they help a lot.
E- What are your fears for the future?
D- C’s keyworker is retiring and will be replaced with someone else and this could be a difficult change for C. People in schools need more training so they understand and can support children with disabilities. It is not right that kids who are not so academic are left to the side and the ones that are get everything.
Interview 7
H is a 19 year old man and who has a learning disability (LD) and accesses our services.
S is H’s older sister.
D is an ENABLE Scotland Employment Coordinator.
D- What are your ambitions for your/ your brother’s adult life?
H- To get a job and get paid. I would like to get my own home eventually
S- In the short term we would like to see H get paid employment. Eventually we would like to see H move into a place on his own and live an independent life. We want to see him independent and not dependent on anyone else and the first step towards that is getting employment and supporting himself. Also to do things that he enjoys, have hobbies and interest and have a family of his own.
D- Do you think that those ambitions for H have changed as he has grown up?
S- I think they are pretty standard life goals that everyone has. To grow up, become independent, have friends and family and a network of people to socialise with. The whole family want that for him. I would add to that that we didn’t always know if it would be possible for H to achieve these goals, but it has become obvious that this is a real possibility for H. we always hoped for this for H, but now we have seen that it is realistic and achievable.
D- What about you H, have your goals changed.
H- No, I have always wanted to work.
D- What factors have contributed to H’s empowerment?
H- I had a language therapist growing up and she helped me. She helped me to get other services involved when I was younger, social work and autism specialists. My social worker and LAC also helped me a lot. They helped me to become independent and travel on my own. This means a lot, I can go out on my own and meet my friends. I used to go to ENABLE’s youth group and now I am on their employment project and they help me develop my skills and are helping me look for a job. The disability employment advisor at the Job Centre was helpful too.
S- Yes she recommended different benefits H could apply for and helped him with his application. When H was growing up the social worker and LAC were very helpful, we felt that they went beyond their remit to help H.
D- Do you feel that you got enough information from the Local Government about support services for people with disabilities and their families?
H- My Mum had to look for help for me.
S- I don’t think things were offered when H was growing up, Mum had to go out and find help. We feel that we got the right support, but we had to go out and find it. ENABLE recently offered H employment support and that’s been good.
D- How did you get involved with ENABLE originally?
H- They came into my school and told us about a youth group, I started going to that so they knew me and when the employment project started they thought it would be good for me.
D- So H do you feel that you get enough information about the services that are out there?
H- Yes, sometimes.
D- What support services do you think you need, H as an individual, and as a family, that maybe aren’t there?
S- The LAC and social work support was great when H was growing up, but they haven’t been able to offer much support now that H is an adult and so more adult support services like these would be useful. Now that he is an adult they seem to have forgotten about him. H is lucky as he has a lot of family support, but other people might not be in the same position. Some people like H might look like they are ok and coping ok, but they still need support and who is there to do it?
Interview 8
D is a 21 year old man and who has a learning disability (LD) and accesses our services.
M is D’s Mum
E is an ENABLE Scotland Employment Coordinator.
E- What are your ambitions for your/ your son’s adult life?
M- I would like to see him in a full-time job and in the future, have his own place and be independent.
D- I would like to work, to go out with my friends, get a car, have my own money and learn how to manage my money.
M- Yes, I have to help him with his money and look after it for him so if he could do that himself that would be really good- he needs to do that on his own in the future. Just to be happy and settle in life, to contribute to society and grow his self-esteem. Get a job he enjoys, handle his own money and contribute to society.
E- Have your ambitions changed for D as he had grown up?
M- D has 2 older brothers and I have never compared them, but growing up I noticed that D was slow to speak. I highlighted this to the health visitor and we took him to a speech therapist. He went to play group, nursery and mainstream school. We became aware that his reading and writing were not progressing the way we thought it should. We spoke to the school, but they said that they didn’t think it was anything to worry about. We had to keep pushing and pushing. We fought for his to be seen by an educational psychologist and eventually they agreed, but the only reason I knew to ask for this is because someone mentioned it to me when I was talking about D to them in the dentist waiting room! The educational psychologist saw him and helped him a bit throughout school, but they cannot be there all of the time. We fought for his to be seen by specialists including a clinical psychologist, paediatrician, dietician, occupational therapist, speech therapist and psychiatrist. Eventually in primary school he was diagnosed with autism. By the time he was going to high school we were given every assurance that the learning support unit in school would have everything in place to meet D’s educational needs. But this didn’t happen and high school was a nightmare for him, it was dreadful. The educational psychologist even said to me- “it’s like this, a little bit of your son’s brain doesn’t work properly”, I was so angry, I hated that attitude. D hated school and left with practically no qualifications and he couldn’t wait to leave. After he left school he became a totally different person with a totally different attitude to life. There was nothing at school to meet his needs, we did all that we could but the school couldn’t help him. He couldn’t cope with school.
D- They didn’t give me the support I wanted. I had problems and difficulties and it would take me a while to do things and I was slow, so the teacher would say that I had to stay behind in school to finish my work and so I started to get a more negative attitude towards school. Eventually I just didn’t want to be there and I gave up. After I left school I went to college and I started to enjoy it.
M- D is very capable of holding down a job. I just want someone to give him a chance. I want him to be happy.
E- You’ve obviously had a lot of input from different services and specialists, is there any in particular that have contributed to D’s empowerment?
M- The supported employment project he is involved in now is great and overall I have been happy with the support he had gotten post-school, from the Job centre, social work and ENABLE, but at while D was at school it was awful. When D got older and we had a discussion with school about whether he should stay on for another year or not, the head teacher say “Absolutely not, we have nothing to offer him here.”
E- What about you M, have you had any information from Local Government about what services are available for young people with disabilities and their families?
M- No not directly, I’ve not been given any information I’ve had to look for all of the support we have had.
E- Have you have any support for yourself M, or the family?
M- No.
E- Do you think that it is something that is needed?
M- I think so, yes. Looking back it would have been useful when D was growing up. A parent’s social group for support would have been good so that you could share your experiences and information, and it would make you feel like you are not alone.
Interview 9
K is a 21 year old woman and who has a learning disability (LD) and accesses our services.
P is K’s Mum
E is an ENABLE Scotland Employment Coordinator.
E- What ambitions do you have for you/ your daughter’s adult life?
P- I’ve always told K that she can do whatever she wants. Things may be more difficult for her but I believe that she can do anything she sets her mind to. It might take her longer than other people, but she’ll get there. I want her to have the same opportunities as everyone else- get a job, go on holiday, do whatever she wants to do. I’ve always tried to encourage her independence.
E- Have your ambitions changed since K was born?
P- Its changed how I se the difference in her. When she was at primary school they always told me that she would never do what other kids would do. They said that she would always be different from everyone else. We’ve always encouraged K though and told her that she can do things and she is becoming more independent and willing to try new things.
E- Can you identify any factors contributing to K’s empowerment?
P- I think a lot of it came from her and her drive ton do things on her own. She has had a lot of family support. She had separate classes to help support her at school, an educational psychologist and speech therapist. In high school she was put in separate classes with kids with behavioural problems and K never had any behaviour problems at all. So other kids were misbehaving around her and she was frightened to speak up. I think she shouldn’t have been in that class, it was very difficult for her and the school didn’t do enough to support her. She was quiet and well behaved and got lost in the background. At college she struggled, but she didn’t want any extra help or to be seen as different and so she didn’t tell them about her learning disability and she didn’t get support. We tried to encourage her to ask for help, but she wouldn’t. she was very stressed and struggled a lot, and she used to stay up working all night, but she passed and graduated and we are so proud of her. K has really empowered herself. K and the family, not really any outside agencies.
E- Have you ever had any information from the Local Government about services for young people with disabilities and their families?
P- We’ve had nothing at all. Since K left school we’ve had no help.
E- What about in formation about social groups or anything?
P- No, nothing.
E- What about you P, have you been offered support as a parent?
P- No
E- Do you think it’s needed?
P- Yes it would have been good to have someone to support you as a parent and let you know you are doing the right thing and taking the right approach. I felt that I was so concentrated on K that in some ways I neglected my other children and I didn’t have as much time for them. Some support for me and K would have let me spend time with them all equally. Some social groups for parents in the same situation might have been good when she was younger too, so you can all get together and talk about what you are going through.
E- Can you think of any support that you might need now or in the future?
P- I think K needs more support than other people so that she can understand. She went to the Job Centre and they spoke to her as if she hasn’t tried to find work and like she doesn’t care, but it’s because she struggles. They are offering her jobs that there is no way that she would actually be able to do and she gets really stressed. More help and understanding from the Job Centre would be good, and more help filling in forms and applying for benefits etc. there is very little support for adults. A keyworker, or support worker maybe that can help her fill out forms and simplify things for her. I worry that she won’t get a job due to her problems communicating and that employers wont understand.
K- Yes, my friends and boyfriend have helped me before but hey aren’t there all of the time. I want an employer to take a chance on me. It would help if there was someone who could be there more often to support me.
