Page 1

Wolverhampton’s People’s Parliament White Paper

Improving the lives of people with Profound and Multiple Learning Disabilities


the lives of people with 2 Improving Profound and Multiple Learning Disabilities

Section 1 What this White Paper is about The People’s Parliament is committed to improving the lives of children, young people and adults with profound and multiple learning disabilities (PMLD). This White Paper tells you what the People’s Parliament thinks will make a difference to the lives of people with profound and multiple learning disabilities in Wolverhampton. The People’s Parliament works primarily with adults, however this Parliament will focus on young people in transition and adults.


the lives of people with 3 Improving Profound and Multiple Learning Disabilities

What does profound and multiple learning disability mean? The Parliament is using the definition taken from ‘About profound and multiple learning disabilities’ by the PMLD Network. People with profound and multiple learning disabilities have more than one disability. Their main disability is a profound learning disability. This means they need lots of support. They might have these other disabilities as well, such as:

ll

Physical disabilities. This is a disability to do with the body. People who use a wheelchair have a physical disability.

ll

Sensory disabilities. This is when people find it difficult to see or hear.

ll

Lots of health problems.

ll

Mental health problems.

ll

Autism. 


People with profound and multiple learning disabilities need a lot of support. They also find it very difficult to communicate.


the lives of people with 4 Improving Profound and Multiple Learning Disabilities

How do people with profound and multiple learning disabilities communicate? People with profound and multiple learning disabilities communicate in lots of different ways. Each person communicates in the way that is best for them. Here are some of the ways that people might communicate:

Using their face. People might show you how they feel by moving or changing their face.

Making a noise. People might show you how they feel by making a noise. Or they might make a noise to make you notice something.

Using their body. People might show you how they feel by using their body. For example a person might lean towards something that they want.

Changing their behaviour. People might show you how they feel by the way they behave. For example, they might push over a table if they are angry.


the lives of people with 5 Improving Profound and Multiple Learning Disabilities

nd u o f o r th p i w g e l Peop ltiple learnin ate u ic and m es commun s. liti way t n e disabi r iffe d f o s in lot

Using speech, symbols or signs.
Most people with profound and multiple learning disabilities 
find it difficult to understand what other people say. 
It is important to spend time getting to know each person and the way that they communicate. 
It is also important to find out what helps the person to understand things. One way is to show someone an object to remind them of something they do often. 
For example, if the person likes art you could show them a paintbrush or a picture to tell them that they could do some art later if they wanted.   Although people have profound and multiple learning disabilities, they are people first! We need to have the same aspirations for this group of people as any other group in society.


the lives of people with 6 Improving Profound and Multiple Learning Disabilities

Section 2 What the Parliament wants Communication Communication is a basic human right. If people don’t understand the way we communicate, they can’t work with us or support us well.

The People’s Parliament wants to make sure that everyone’s way of communicating is valued.

Many people with profound and multiple learning disabilities (PMLD) do not have their communication needs met. Many people who support or are working with people with PMLD do not understand how to communicate with them.

Staff that work and support people with PMLD should spend time getting to know the person and their way of communicating.


the lives of people with 7 Improving Profound and Multiple Learning Disabilities

Communication Passport A Communication Passport tells you how the person communicates. It is put together by everyone who is involved in their life such as; paid carers, family carers, and professionals. It is a guide for anyone to know how to work with the person.

A Communication Passport presents the person positively.

It could be a book, a DVD or a CD-ROM.

It should be updated regularly. It needs to be taken into the community with the person.

Speech and language therapists have an important role. They support the individual with a profound and multiple learning disability, their families and carers with communication. People with PMLD need access to speech and language therapy for assessment and support.


the lives of people with 8 Improving Profound and Multiple Learning Disabilities These stories have been told by people Changing Our Lives have worked with. Several stories have been combined so that individuals can not be identified, as people have been asked to remain anonymous.

Gabby’s Story Gabby tells a story about how she communicates and what impacts her life, so we can understand more about the life of someone with a profound and multiple learning disability. My name is Gabby. I am 46 years old. I love life. I don’t use any words to communicate. I communicate by using sounds, and taking people to where I want to go by pulling their arm. I like to touch people to tell them what I’ve bought. I’m quite strong, so if I get really excited, I will pull you to where I want you to go.

My life is happy now, but years ago I used to go to a day centre, where I had to sit on a big blue mat in the corner of the room, and that’s where I had to stay. When people visited me, they used to say ‘don’t go close to Gabby, she’ll pull your hair and hit you.’ So people who came into the centre never used to come near me.


the lives of people with 9 Improving Profound and Multiple Learning Disabilities

The staff used to also say ‘don’t make eye contact with Gabby,’ so no one used to look at me, so I was left alone on the mat. I have heard people call me ‘challenging, a biter,’. They also used to say things like ‘watch out she’s going to kick off now.’ But I am clever. When I was in respite care and people didn’t make eye contact with me, I used to get their attention by going into the office and ripping up their papers.

I used to be sat by the entrance of the respite care centre, as they thought I liked to sit and welcome people, but no one talked to me, I was left alone.

I began to feel depressed. I started to throw things, rip things up, hit and bite people. Staff just thought I was challenging. So when I was struggling and when I was really depressed, I didn’t get the support for mental health like others. They didn’t think my mental health might be suffering.

I was sectioned not because people wanted to help with my mental health, but because I was seen as a risk to myself and others.

When I was sectioned the day centre refused to have me back. I ended up on an assessment and treatment centre for 2 and a half years.


the lives of people with 10 Improving Profound and Multiple Learning Disabilities

What the People’s Parliament wants ll

The People’s Parliament wants all learning disability providers and council services to be trained in a range of communication methods.

ll

Everyone with a profound and multiple learning disability should have a Communication Passport that is reviewed regularly and used by everyone involved in their life.

ll

All learning disability providers and council services to be trained in how to develop Communication Passports.


the lives of people with 11 Improving Profound and Multiple Learning Disabilities

Life in the Community “We should have the same life chances as any other member of the community.� People with profound and multiple learning disabilities (PMLD) must have equal access to their local communities in the same way that everyone else does. Community is an important part of life. We want to make sure that people with PMLD have meaningful and supported lives in their local communities. Being part of a local community does not just involve going out to local places. It is about developing relationships with people other than paid staff. People with a profound and multiple learning disability have a better lifestyle when they have opportunities in their communities. Many people in society do not know that children and adults with PMLD exist. People with PMLD are often excluded from society and their contribution is not noticed or accepted.


the lives of people with 12 Improving Profound and Multiple Learning Disabilities

The People’s Parliament believes people with PMLD should be as equally valued in the community as any other person. People with PMLD should not be separated from communities, and should be able to access all areas.

“I have the right to take part in meaningful, accessible leisure activities the same as any other person.” Everyone should expect to live in the community and be a part of this. This includes accessing all its facilities.

For people with PMLD the lack of fully accessible toilets denies them this right.


the lives of people with 13 Improving Profound and Multiple Learning Disabilities

Max’s Story

Maxine tells us about accessing the community and what is important in her life. My name is Maxine but most people call me Max. I used to live in a nursing home for 60 people. The nursing home care for older people who might have had a stroke, dementia or some kind of brain injury. I lived there for four and a half years, even though I was just supposed to go there for a short break for about 3 weeks! I was the youngest person there, so I never made any friends or had anything in common with people. I was almost invisible and had very little social interaction with staff. Most of my time was spent in the home, using my laptop and watching TV. A couple of times I went to the park or out for a meal. I moved to a shared bungalow with a lady called Marie in 2010. The first thing I noticed when I moved here was how much quieter it was. Now I am only living with one other person, rather than 59. I immediately felt like I was home, something I had never felt before. Equally as important is that I could choose who I lived with.

“For as long as I could remember someone else has chosen this for me, someone who always knew better.� One of the most important things I have now is my partner, Steven. The staff where I live are really supportive of my relationship and know how important it is to me. We went on holiday to Blackpool last year, just Steven and me, and support from staff, which was something I had never done. It was amazing!


the lives of people with 14 Improving Profound and Multiple Learning Disabilities My life is so different now. I enjoy going out to meals. Meals out before used to be about where the staff wanted to go, rather than my choice; it was often with people I did not know or like. As I live in supported living I am encouraged to do things for myself. I plan my meals; make a list and the staff help me buy the food I need. To get to the supermarket I go on public transport, using my bus pass. Before I moved here I was always on a minibus or in a taxi, so that’s a real change. I feel more like everyone when I am on the bus. When people used to see me on the minibus I bet they thought;

“Look, that person is disabled, now I am just like them. For the first time in a long time I feel like a real person, a young woman not someone with a disability. I am finally free of labels.” One really important change is that now I access all my health appointments in the community. This means I go to the doctors, opticians and dentist. This would not have happened before as health services used to come to me at home; I was very isolated from my immediate community “disabled people often are.”

The biggest change for me is having the support to do things I enjoy and people listening to me. My independence has really increased. I have my own bank account with my own bank card and pin number. I have the support I need to go to the bank and withdraw money. I have to pay my own bills such as my TV licence, the water rates and electricity. Once the bills come in I have support to go to the bank, take the money out and pay them. Most people don’t like paying bills but I love the freedom and the control over my life, even with something as simple as paying bills.


the lives of people with 15 Improving Profound and Multiple Learning Disabilities

Changing Places Toilets There are about 16,000 adults with PMLD in England (Mencap, Involve Me resource.) We estimate there are approximately 90 adults in Wolverhampton with profound and multiple learning disabilities. Most of these people need Changing Places toilets.

What is a Changing Places toilet?

Changing Places toilets are different to standard accessible toilets. Standard disabled toilets do not provide the necessary equipment and space to allow for more than one person.

Changing Places toilets provide;

The right equipment : ll a height adjustable adult-sized changing bench ll a tracking hoist system, or mobile hoist if this is not possible. Enough Space: ll enough space in the changing area for the disabled person and up to two carers ll a centrally placed toilet with room either side for the carers ll a screen or curtain to allow the disabled person and carer some privacy. A safe and clean environment: ll a large waste bin for disposable pads ll a non-slip floor ll wide tear off paper roll to cover the bench


the lives of people with 16 Improving Profound and Multiple Learning Disabilities

Without these facilities, families have to change the person they care for on a cramped and dirty toilet floor. This is dangerous, unhygienic and undignified. The only other option is to limit outings to a few short hours - or to not go out at all. Without Changing Places toilets, the individual and families are putting their own health and safety at risk. People with PMLD need support from one or two carers to use the toilet or to have their continence pad changed. The People’s Parliament supports The Changing Places campaign.


the lives of people with 17 Improving Profound and Multiple Learning Disabilities

Amy’s Story

Amy tells us what her life is like without access to a Changing Places toilets. Amy is a 25 year-old woman with a profound and multiple learning disability. Amy loves to go out into the city and she especially loves shopping. Amy’s favourite type of shopping is clothes shopping as Amy loves lots of brightly coloured things to wear. Amy has a physical disability that means she has to use a wheelchair and she is doubly incontinent. Amy does not often get to go out shopping for her own clothes because she cannot access a toilet with a hoist. Amy needs a hoist because she’s not able to get on and off the toilet by herself. This means she can only stay in the city for a short amount of time as she will need to go back home to use the toilet. Amy used to live in a residential home. When staff took Amy out for long periods of time, she would sit in a soiled pad. This made Amy very uncomfortable and some people said it made her display “challenging behaviour.” Amy doesn’t use words to communicate, she uses sounds to communicate and when Amy wants to tell you that she’s unhappy with something she’ll use loud sounds. So maybe twice a year if she’s lucky Amy gets to go clothes shopping. She can only go for about an hour at most and by the time she’s got into the city and got back out again, this is about 20 minutes of shopping. Sometimes the staff in Amy’s new home think it isn’t worth it really, so amy doesn’t get to go out shopping. In fact Amy doesn’t get chance to go out much at all.


the lives of people with 18 Improving Profound and Multiple Learning Disabilities

What the People’s Parliament wants ll

The People’s Parliament wants more Changing Places toilets put into public places. This includes; shopping centres, arts venues, hospitals, leisure complexes, railway stations.

ll

The People’s Parliament wants 5 Changing Places toilets within the community within the next year.


the lives of people with 19 Improving Profound and Multiple Learning Disabilities

Healthcare

We know from investigations into health care that people with profound and multiple learning disabilities often experience health inequalities. The Confidential enquiry into premature deaths of people with learning disabilities published the findings of its two-year investigation in March 2013. It found that out of 247 deaths, 37% of these avoidable. These investigations show that people with profound and multiple learning disabilities often need lots of support with their health. The People’s Parliament is looking at the issue of health in a separate Parliament. In the health Parliament we will focus in more detail on the health issues of people with PMLD.


the lives of people with 20 Improving Profound and Multiple Learning Disabilities

What the People’s Parliament wants ll

People with profound and multiple learning disabilities often have lots of health needs, so we want to make sure they are a priority group for health checks and health action plans.

ll

Health professionals should receive additional training to make sure that people with profound and multiple learning disabilities have equal access to the services they provide.


the lives of people with 21 Improving Profound and Multiple Learning Disabilities

Postural Care Damaging changes to someone’s body shape can happen slowly over a long period of time. People with profound and multiple learning disabilities are likely to be at risk of developing changes in body shape. Changes to body shape can result in breathing problems, blood circulation and digestion difficulties. Also muscle wastage can happen due to lack of movement. Poor postural care can impact on the quality of life. If the body shape of someone with profound and multiple learning disability is not protected there can be lots of problems and can be lifethreatening. Many families receive no support or advice about how to manage the sleeping position of their son or daughter.


the lives of people with 22 Improving Profound and Multiple Learning Disabilities People with profound and multiple learning disabilities and their families should expect to be provided with good information, timely equipment, and the support needed to be given the best opportunity to protect body shape. People with badly distorted body shape will have less choice and require more complicated equipment. They will also need much more time and energy of their supporters. This will be taken up with managing the difficulties of their care. Dr Pauline Heslop who led the confidential Inquiry into premature deaths of people with learning disabilities advised the People’s Parliament of the following: The Confidential Inquiry into premature deaths of people with learning disabilities noted the importance of good postural support. It found that some people were at high risk of health problems because their body shape had changed over the years. In particular, problems with breathing, digestion and pain were found. These problems made it hard for people to stay healthy and fight infections, and led to a risk of early death. Having these problems also meant that people were likely to have a poor quality of life. In some cases, the Confidential Inquiry found that no measures had been taken to try and prevent changes to a person’s body shape. One of the recommendations of the Confidential Inquiry was for services to be better about thinking in advance about a person’s needs to prevent problems happening in the future. It noted the importance of good postural support as an example of this.


the lives of people with 23 Improving Profound and Multiple Learning Disabilities

What the People’s Parliament wants ll

All children and adult’s learning disability providers and council services to be trained in good postural care.

ll

Training should be quality assured and nationally accredited. This is so that those doing the training can be confident about what they are learning.

ll

There should be early intervention for children and young adults, to stop changes to body shape.

ll

A postural care plan should be in place as early as possible.

ll

Postural care should be included in the Annual Health Check and as part of a person’s Health Action Plan.


the lives of people with 24 Improving Profound and Multiple Learning Disabilities

Buying my own support When people are given money from social services to buy their own support this is called a Personal Budget. If you take the money and organise the support yourself, this is a Direct Payment. People with profound and multiple learning disabilities and their families need to be supported to have personal budgets and direct payments. Personal Budgets mean they have more control over the support they receive. This means they can live more independently in the community.

What the People’s Parliament wants Young people with profound and multiple learning disabilities going through transition need to have personal budgets and direct payments.


the lives of people with 25 Improving Profound and Multiple Learning Disabilities

Joe’s story

Joe tells us about the quality of his life and how he spends his time during the day and night. My name is Joe and I am 38 years old. I have a profound and multiple learning disability. I don’t use words to communicate. I have my own way to communicate, one of the ways is with noise. Only my mum knows if I am happy or sad by the noises I make. I don’t have a communication passport. I can walk a little bit, most of the time I live in a wheel chair. For the last 20 years I have used a day service. Every day I get picked up on the minibus even though it’s a 5 minute walk to the day service. Its not 5 minutes on the minibus, we pick up others on the way, so it usually takes 1 hour. I sit on the minibus with people I don’t like, sometimes they scream and sometimes I scream. I am not happy on the minibus. Sometimes I don’t want to go on the minibus, I stand on my drive and refuse to get on. I sit in the same room everyday in the day centre. Sometimes the staff come in and give me a baby toy to occupy me. These are bright toys that sit on a tray in front of me. Sometimes I touch them, sometimes I don’t. Sometimes I go to the sensory room, staff put me in there to go to sleep.


the lives of people with 26 Improving Profound and Multiple Learning Disabilities

When its time for lunch, I eat in the room I am left in all day and don’t go out in to the canteen to see my friends. Occasionally I am moved to the canteen although I don’t sit with others, I don’t get to mix with other people. The room I am left in all day, is only for people with PMLD. Some of these people use their body and their behaviour to communicate. One of the women in the room often hits me. She uses this to communicate, staff don’t do anything about this, I’ve heard staff say that people with PMLD don’t feel pain like everybody else. Staff say

“he doesn’t feel it like other people, he’s not really aware.”

The only time I go out is when mum takes me out, sometimes we go shopping. I worry about my mum because I don’t let her sleep at night, as I am wide awake. When my mum goes there will be no one to give me a hug. She is the only one that hugs me.


the lives of people with 27 Improving Profound and Multiple Learning Disabilities

Summary of what the People’s Parliament wants Communication

The People’s Parliament wants all learning disability providers and council services to be trained in a range of communication methods. Everyone with a profound and multiple learning disability should have a Communication Passport that is reviewed regularly and used by everyone involved in their life. All learning disability providers and council services to be trained in how to develop Communication Passports.

Changing Places Toilets

The People’s Parliament wants more Changing Places toilets put into public places. This includes; shopping centres, arts venues, hospitals, leisure complexes, railway stations. The People’s Parliament wants 5 Changing Places toilets within the community within the next year.

Health Care

People with profound and multiple learning disabilities often have lots of health needs, so we want to make sure they are a priority group for health checks and health action plans. Health professionals should receive additional training to make sure that people with profound and multiple learning disabilities have equal access to the services they provide.


the lives of people with 28 Improving Profound and Multiple Learning Disabilities

Postural Care

All children and adult’s learning disability providers and council services to be trained in good postural care. Training should be quality assured and nationally accredited. This is so that those doing the training can be confident about what they are learning. There should be early intervention for children and young adults, to stop changes to body shape. A postural care plan should be in place as early as possible. Postural care should be included in the Annual Health Check and as part of a person’s Health Action Plan.

Buying my own support

Young people with profound and multiple learning disabilities going through transition need to have personal budgets and direct payments.


Wolverhampton’s People’s Parliament White Paper

Improving The Lives of People with Profound and Multiple Learning Disabilities

Email: ask@changingourlives.org Web: www.changingourlives.org

Wolverhampton People's Parliament PMLD White Paper  
Read more
Read more
Similar to
Popular now
Just for you