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Hackney Action on Learning Difficulties
HAMHP (Hackney Action on Learning Difficulties) is a voluntary group of
people with learning difficulties, carers, workers and friends
The aims of Hamhp are: To unite the efforts of groups and individuals in Hackney working for the improvement of facilities for people with learning difficulties to enable them/us to live as independently as possible, while ensuring that proper services are also provided for those who cannot live independently.
HAMHP was established at an open meeting at The Huddleston Centre on Thursday 7th January 1982 In May 1989 it was decided that the longer name of the association should be Hackney Action on Learning Difficulties. (Previously it was Hackney Action for Mentally Handicapped People).
Until July 2005, Hamhp met monthly at the Huddleston Centre, 30 Powell Road, E5 8DJ. We now have occasional special meetings there and also meet in members' homes, relevant offices etc. We communicate with one another by telephone, email, and the occasional printed newsletter. When we hold a meeting at the Huddleston Centre, it starts at 7pm and ends at 9pm. Anyone and everyone is welcome at the Huddleston Centre meetings. We would also like to hear from anyone who would like to participate in other activities.
For more information about Hamhp contact
At the Huddleston Centre at 7pm on
As well as some special guests, food and drink, we hope to have:
A report on Person Centred Planning
We are also planning a meeting with North East London Advocacy about possible advocacy in relation to the two residential units.
Previous Meetings and other Events
Party The residents of Wick and Homer Road had a party on Friday 16.9.2005 with friends, relatives and neighbours. The weather stopped it being in the garden, so we met in the Wick Road lounge with music, some dancing, eating, drinking, and communicating in different ways. Steve Easter, from Hackney Social Services, was booked as the "entertainment", with a talk on Person Centred Planning. He told us to keep on eating and demonstrated how he could spin round in a circle to see everyone. He then told stories about people managing to tell others what they dreamed about. How a lady who could only say "yes" or "no" made many disappointed trips to the hairdresser before she got the highlights she wanted in her hair. How a man laughed when someone said he wanted to be the driver - Not just because he could not, but because someone had recognised what he wanted. Getting this party together was lot of work for the staff, but they seemed to enjoy it as much as the rest of us.
Friday 19.8.2005 We met with Nji Oranu at St Leonards for a morning session on Person Centred Planning.
Thursday 14.7.2005. Last regular (monthly) meeting. Social.
Thursday 9.6.2005 Talking with Mark Hooper, from Heritage Care. We also adapted our constitution and rules to allow for our not having regular meetings
Thursday 12.5.2005 Talking with Steve Easter: a Service Manager at Hackney Social Services. We discussed Wick and Homer Road. Steve would be meeting the new manager for Heritage Care, Mark Hooper, and would raise issues such as maintaining and improving standards of care, independent advocacy, the use of the multi-media profiling, the possible role of a network of friends, and the possibility of visitors' and relatives' charters.
Thursday 10.3.2004: multi-media in residential settings by John Ladle. This means people living together in communal homes using videos on computers to communicate their needs and get more involved.
Thursday 10.2.2004 What is Advocacy? Koy Wright works for North East London Advocacy (NELA) in Walthamstow. He is coming to discuss the different kinds of advocacy and who needs it. This is a follow- up to the meeting with Natasha Middleton who is the NELA advocate for people with learning disabilities in Hackney.
Thursday 13th January: Living healthier lives Many people with a learning disability have poorer health than other people. Mencap says that there are many reasons for this, but one of them is that people with a learning disability get poorer health services than other people. In the worst cases, this leads to people with a learning disability dying. See Treat Me Right Report Kerry Turner, from Mencap, will present their findings and Euginie Zengerink from the local health team will discuss them with us.
Children and Young People We are talking about opportunities for children and young people with disabilities in Hackney to play, socialise, learn and develop their lives. In the first meeting about this (Thursday 11.11.2004), Kunbi Jones told us about The Key. The Key is a colourful and informative magazine for and about children and young people registered as having a disability or special educational needs in Hackney. It is also the name for the register. Kunbi will talk about the register and some of the organisations she knows about through her work. In 2005, we could have a meeting to talk about opportunities for young people from thirteen to twenty-five years old.
Thursday 14.10.2004 Joy Vollmer talked about the latest reports on Homer and Wick
" The Breaking Point Campaign looks at short break services for carers and people with severe learning disabilities and campaigns to improve short break services for this group.
Thursday 13.5.2004: Natasha Middleton on speaking up: People should speak up for themselves. But if people cannot speak, who speaks for them? Natasha works for North East London Advocacy. She is an advocate for people with learning disabilities in Hackney
Thursday 8.4.2004: Rani Ogundipe on things to do: Anika Patrice and other people who provide activities for people.
Thursday 11.3.2004: John Ladle on listening to people. John
said that when listening to people it is as important to use your eyes as
your ears. Some people cannot speak with their voices, but they communicate
other parts of their bodies
Thursday 12.2.2004 We talked about making friends and helping people and Mencap's call for a minimum standards guarantee for short breaks.
Hymie's pictures: Hymie Aaronberg was one of the founder members of Hamhp, back in January 1982. He is an artist and we were hoping he would bring some of his pictures to show us on Thursday 8th January 2004 - When we were 22 years old. We are still hoping to see his pictures at another meeting.
Thursday 11.12.2003: Sally Francis, District Development Officer for Mencap visited to discuss services for people with profound disabilities. Amongst other things, she told us about the PMLD Network which works to ensure that people with Profound and Multiple Learning Disabilities are valued.
Thursday 13.11.2003: We had a discussion on Wick and Homer Road, the new homes of the ex-Malpas Road residents
A Message from Barbara LayneChristine Hill and I chair the meetings of Hackney Action on Learning Difficulties.
We are a very open group, and we want everyone who is interested to take part.
Some of our members have learning difficulties, some are carers, some are just interested people. Everyone is welcome.
We are making this website together, and we hope it will involve more people in improving services.
So far, the star of the site is Joan's cat.
Edited by Joan Hughes
Person Centred Planning
A long time ago, in June 1993, James Reilly, Service Provider, told us he was "pressing for training in individual programme planning as a high priority". In other words, staff in Hackney were to learn how to find out what individual service users (and carers) want and need, and to plan services that let them do that.
The government says that person centred planning means putting a person at the centre of planning for their lives. Its ways of finding out how someone wants to live his or her life, and what is needed to make that possible. And it is using that information to improve the services and to improve the person's life. It means listening to what people want - including listening to people who cannot use words to speak - and learning from them how they want to live their lives. It also means helping them (and the people who support them) think about what they want now and in the future. And it means family, friends, professionals and services working together with the person to make this happen.
In August 2005 we talked to Nji Oranu, who was then responsible for person centred planning in Hackney. One of the things we talked about was sorting out what is important to people and what is important for them - and how to work towards a good balance. This is a useful way of thinking about a situation before deciding what should happen next. For example, independent travelling might be important to a person, but it would be important for his or her well being not to get lost. What are the possible gains and risks? And how should they be balanced?
Nji argued that we need everything in Hackney to be more person centred. We discussed ways in which services could be systematically reviewed to see how they could be improved. Since we started (1982), Hamhp members like Rani Ogundipe (of Anika Patrice) have argued for services planned around individuals' needs and not around the needs of the system. Ngi appears to be saying that we will need to establish systems in order to make the systems more aware of and responsive to individual needs.
In June 2005 we talked to Mark Hooper, from Heritage Care. He wants to improve the quality of person centred planning at Wick and Homer Road, especially training in person centred planning. However, he wonders if staff who work directly with a resident are the best people to coordinate his or her personal plan. Family members and people who are not directly looking after the residents may be better at being facilitators, and they could be trained for this.
Hamhp is discussing these issues. We want to develop our relations with the residents at Wick and Homer, and some people may want to become involved with person centred planning. John Ladle has also talked about citizen advocacy. Some people are thinking about how relations between staff, visitors and residents can be most productive and how we can get to know one another better. How, for example, can relations between residents and others be developed without infringing on the residents' right to privacy and self-determination?
Research says it works
A report called The Impact of Person-Centred Planning was released at the end of October 2005. Based on research by people at Lancaster University, it shows that life can be improved a lot when people make this kind of plan. Individuals do more with their live, and they do different things. They get to know more people and have more contact with friends. They can become more involved in community activities. And making a plan has sometimes brought to light health needs that are not being met.
However, not everyone gets a plan. People are more likely to get one if they already had a keyworker or care manager, or lived near to their family. People with mental health, emotional or behavioural problems are less likely than others to get a plan. People in supported accommodation are more likely to get a plan if staff turnover is low and good internal planning systems are already in place. The Report calls for action to get good plans for everyone with a learning disability.
by Kunbi JonesI run a service called the Key and publish a magazine four times a year which is also called "The Key". It is funded by Health and Social Services. But we try to get additional money from elsewhere as funds are inadequate for everything we would like to do. The Key is based at the David Winnicott Centre. It caters for people with disabilities, including physical disabilities, sensory disabilities and learning disabilities. It is for young people from birth to age 19. There are eligibility criteria and a Registration Form for young people who want to join.
We try to get the best deal from other services. We run an information service for carers and others. We share information about other useful services. We collect information from the Registration Forms. We want to find out which services are being used, and what it is like to get hold of the service and to use the service.
Some services do not go to everyone who needs them. Money may be the problem.
The Key holds Fun Days. We had one in Clissold Park for the children and also for families and friends.
The Key Leisure Card gives access to Sports activities with discounts for the children for access to Leisure Centres. They go in for about half price. If support is needed, the person accompanying them gets in free.
We have a two hour session involving football, badminton and many other games; also swimming and trampolines at Leisure Centres. Kings Hall and Britannia Leisure Centres are in the Key scheme. Clissold Leisure Centre may reopen soon and rejoin the scheme. Clissold has soft play for younger children, or for anyone with disabilities who enjoys this.
The Key has Ty-ga Karate lessons every fortnight. Karate is about understanding the body. It includes many skills besides self- defence. It develops skills in moving hands and feet and developing balance. It includes small movements of hands and feet and hand and eye co-ordination. Karate makes the young person more independent. Karate is an inclusive form of Karate.
A problem may be communication as Key does not have sufficient money to give additional help- e.g. for someone who uses sign language. But we try to communicate by gestures or this young person or child can bring a family member with them for support.
We have had about 900 children on our books. There are about 750 getting the service at present. Some are removed for the Register, either because they become too old on their 20th birthday, or they move away, or they have recovered from their disability. About 100 have come off the books.
When a young person reaches 19, they should be able to move to a similar Adult service. The Children's Act means that our service has to stop at age 20. There is a service called the Connection Service for young people up to the age of 26. It helps people to move from a children's service to an adult service.
The Children's Act requires each borough to have a Register of children with disabilities. Some Boroughs were slow in putting a Register into practice and some Boroughs still do not have one. The Register is voluntary. The number of children who have a statement with respect to education in Hackney is 1500. These need special support in school. These children have to have a statement but they do not have to be on a Register. The Key does not provide for all of these children. Boroughs can make the Register more or less inclusive. In Hackney we want to make the Register inclusive and have included communication difficulties.
The Children's Act was intended to help in planning services for children with disabilities. So data has to be collected. Because Registration is voluntary, we have to encourage families to give and update information. In October and November, we send out to families, statements about information we have and ask them to update them. They have to re-apply for the Key Leisure Card each year.
Shortly, Key is moving to a new building. It will be an advantage because other services will be working there.
|Brian Payne, a longstanding Hamhp member, died in June 2004. On behalf of all of us, we sent flowers to his funeral. "To Brian, from your friends at Hamhp. Thank you.|
Anika Patrice Project
For People with a learning difficulty their family and carers who come from the African, Caribbean and Asian communities
Rani wrote this short history of Anika Patrice for our May 2001 newsletter:
Anika Patrice was founded 1991 by parent carers of people with learning difficulties from the afro-caribbean and asian communities, as there were no evening activities for adults with learning difficulties. The parents came together to provide services for their sons and daughters themselves. This also helped them to meet other parents in a similar situation. It provided a much needed respite for carers when their sons and daughters attended Anika Patrice clubs. Currently our office is at the Old Fire Station in Stoke Newington. As this building is not accessible, our activities are carried out at other venues in the borough.
Small funding was secured from joint finance, and the organisation became a registered charity. Then further funding was secured to develop the project. This came from Social Services and Trusts, including the National Lottery. However, Social Services withdrew all funding from our organisation in June 2000, and this created quite an impact on our service provision. We fought back, and, with funding from other sources, were able to consolidate our services, but no further development took place. If we receive no Council funding this year , there will be cuts to our evening sessions, affecting many users and carers from the black and asian communities. We hope the local authority will reinstate funding this year.
For some people, particularly those with complex needs, structured activities are important to enable them to integrate with their peer groups, learn social skills and access other activities in the wider community. We believe we provide a vital service for people with learning difficulties and carers. Although Anika Patrice primarily works with people from the black and asian communities, it is not exclusive.
Different terms have been invented to talk about different kinds of advocacy. Advocacy usually means one person speaking up for another. Self advocacy is the person speaking up for themself.
An advocate who speaks up for someone else may be a professional advocate, a citizen's advocate or an informal advocate. An example of an informal advocate is a friend speaking up for you. A citizen's advocate is an unpaid person or volunteer who speaks up for people regularly.
Natasha Middleton is a professional advocate who works in Hackney for North East London Advocacy with people with mild to severe learning difficulties.
She told us:
The role of an advocate is: to listen to the person's issues and speak up for them if they cannot do it themselves. To make sure that other people listen to them. To support people to get help from Health and Social Services. To make sure that people get the service they need and to listen to complaints. To refer to other agencies. To put pressure on care managers and other workers - for example, to arrange the yearly review of people's needs. This is important because people's needs change.
We asked how Natasha listened to people, and negotiated what her role would be, when the person could not use words to speak.
Natasha said that, as well as being asked to help by the person, she can be asked to help by a family member, a care manager or any worker. She then meets the person who will be her client to make an assessment of what he or she needs. She is the client's advocate. She can talk to carers and workers, but she does not represent the carers and workers, only the individual.
If the client can speak with words, it is fairly easy to communicate what an advocate is, and to work out what the client wants. If they do not use words, it is more difficult, as she does not know how much they understand. She spoke about one person who understands one language (not English), but does not speak words. She speaks to him via a support worker, and it is clear that he understands a lot. It takes time to build up trust and a relationship, and how well this can be done varies from person to person.
Natasha pointed out that, with everyone, it is important to notice the non- verbal communication. An advocate should be especially tuned to this, and may pick up on things that other workers do not. She sees how people appear in themselves, and notices mood changes or changes in behaviour. It is important to know a person over a period of time to recognise when their mood or behaviour changes.
The basic role of an advocate is to express the desires and interests that the client has expressed in some way. When a person cannot clearly express their wants or needs, the advocate might act in their "best interest". This has been called best interest advocacy as distinct from expressed interest advocacy. There are a lot of issues here that we would like to discuss further.
We asked how long Natasha normally worked with one person.
She said that three months is the average length of a time, but it varies according to the issues. She has twenty open cases at the moment, but she is working on five of these intensively. Usually she takes on specific issues rather than acting as a general advocate for a person.
We discussed different needs for advocacy in different contexts. Natasha's clients are living in the community and she advocates for them on an individual basis over specific issues. The people who lived at Malpas Road, most of whom did not use words, had advocates working with them on a long term basis. As they were living together, an issue that concerned one of them might also concern others. The advocates made regular reports on their work and on issues that they thought needed attention. This kind of advocacy has been described as involving a monitoring role. The advocate "monitors the client's situation, watching out for his or her health and quality of life and the way he or she is treated". The advocate is an independent representative of the client's interests.
Natasha believes there is a need for much more advocacy in Hackney. She is not sure how many people are aware of the service. Katrina suggested that independent advocacy needs to be built in as a requirement for some people. It should be a right. In particular, people with severe disabilities should have a right to an advocate - This should not come down to money.
We wanted to talk further about the need for advocacy, the different types of advocacy, how important providing advocacy is, and where it should be an essential part of the service provided to people.
|advocacy - a very old word|
John Ladle from Acting Up showed us a video of people learning creative communication. This meant that they had to make up ways of talking without words. It was about different ways of communicating.
Betty liked a part where people crouched on the floor like horses and other people lay across their backs. John explained that this was learning to trust. We talk with our bodies when we help one another. We need to trust the people we touch.
Touch is an important part of life. A worker said she always shook hands with clients and spoke about a client who touches her face when they meet.
Another game in which people learnt to trust was having one person with their eyes shut (blind) being led about by someone with their eyes open, exploring the world with their fingers. We need to build up a good trusting relationship for body contact and moving together. Too often, workers are not given the time, the encouragement or the training to do this.
Acting Up started as theatre and so we saw people acting ideas. We saw people lying on large sheets of paper whilst other people drew their outline. We saw people gently swaying together and waving each other's arms. We saw people making rhythms by slapping and clapping each other's hands. We saw people sitting quietly, enjoying looking at one another. We saw people become a daisy chain by lying on the floor and resting heads on the next person's leg.
There were some words. We were pleased to hear our old friend, Georgina Addai. She talked about why she was there. She was learning how to communicate through music, body language and play. She thought everyone who worked with people with communication difficulties should be there.
Some people learning were workers. Some people teaching were people with severe communication difficulties from Malpas Road. They have now moved to Wick Road and Homer Road. Cynthia was there, the lady who came to show us on her video how she communicates.
On the video, bells and other musical instruments were used and people even made a percussion band. No one taught them to play. They discovered for themselves how to communicate with a music of talking. Ted thought we ought to do this at Hamhp and John said "Why not? There are plenty of instruments in the Huddleston music room".
People also brought photographs and arranged them in a way that told a story about themselves.
We heard someone say she was using all her senses, looking at what someone else was doing, listening to the sounds he made, and responding. This way, people would be able to communicate things they could never have done before. They had the time and the space to actually communicate effectively.
When communications like this are put onto video, other people can see what is possible. People suffer from other people not knowing how they like things done. On a video, they can be like Cynthia, and show us.
The people on the video were enjoying themselves. Someone said she was learning that you can actually have fun at work and with the clients. That body contact can be made enjoyable and that people can learn to value one another's company.
At the end of the video, some of us had to go to the toilet. This took a long time because the upstairs toilet was broken and we had to help people with walking sticks and frames to get downstairs. People spend a lot of time helping one another like this. Someone on the video called it a way of communicating and said we should make it enjoyable.
Alan thought it was all very good and told John he enjoyed it. Robert, Alan, Sylvia and Betty carried on talking about the video whilst waiting for the car to take them home. We all thought of people we wanted to talk to without words.
Intimate and Personal Care
These are extracts from a discussion at Hamhp on 10.7.2003
Steve Carnaby, Clinical Psychologist, handed round a research paper on Intimate and Personal Care.
Steve:- I have not personally been trained in personal care. I talked to staff, who deal with very vulnerable people, most of whom cannot use language. I feel that I myself, could do harm to people if I did personal care, by not knowing how to do it properly. I worked with Paul Cambridge and designed a questionnaire to investigate what training staff had had and how they felt about doing personal care.
Care is split into personal care such as shaving, hair care etc; and intimate care, which means more intrusive attention which is not usually done in front of others. Staff found intimate care more difficult than personal care. We got staff to break things down, step by step, and compared how different staff did it. Broadly staff did it in same way but differed in details. Most of us do not know what intimate care would feel like, especially if done by a stranger.
I asked staff to rate on a 1-to-5 scale how uncomfortable they felt when doing personal and intimate care. They found intimate care more difficult. Staff working with children found intimate care easier.
Barbara: Adults get embarrassed, unlike children. It is socially more acceptable to give children intimate care.
Steve: This needs to be sorted out. Special training is needed when working with adults. Staff might give the service user an item needed for the care task to carry, so that they know what is going to happen. Many staff do a running commentary when performing a task. I think that is what I would tend to do to create a supportive atmosphere. But the person may not understand a complex stream of language. We could be creative in ways such as putting some cream on the person's hand before putting it on an intimate part of the body.
Roy asked a question about interrupting what the person had been doing before the personal care took place.
Steve: Sometimes we see intimate and personal care as an interruption in what we had been doing with the person.
Rani: Sometimes interruptions are annoying to staff and they show it.
Roy: With autism, any variation in routine upsets the person concerned.
Rani: When visiting people's homes, staff are often rushed. People are often processed.
Barbara: It does take time to give personal care. Rushing does not help people.
Steve: If front-line staff are not given sufficient time, they may not be able to improve the way they do things. Intimate care can be a valuable way of forming relationships between people and staff.
By the way, most of our research work has been done with children lately because more money has been allocated to this area. But I am very interested in adult personal care.
Katrina asked a question about training.
Steve: Training often means staff sharing ideas between themselves. This may be difficult because staff are embarrassed about talking about these things. There is a split between health care and social care, which makes more difficulties as there may be disputes about who should be doing certain things. However, if we do not discuss intimate care, we cannot make progress.
Andrew: If staff refuse to do intimate care - sometimes it means service users travelling about in an unclean state.
Steve: Some staff avoid doing the intimate care - and in some cases it all gets loaded on to one staff memeber. New staff often start their jobs and do not realise they have to do things like changing incontinence pads. But by doing this, we are valuing people.
Barbara: What staff have to do should be put into their contract, when they are first taken on.
Steve: There is a White Paper on training for front-line staff. All new staff have to register to get NVQ award level 2. But it is an option. There is no statutory training in social care.
Katrina: Basic training means things like taking care to keep people warm while they are being washed. Steve and Paul have developed a Training Pack which aims to make staff think about how to do intimate care.
Steve: Good and bad practice are distinguished. Most care staff are female. It is hard to find male staff. Most abusers are male so we should not have an all-male environment anywhere. Most men agree with this. This is what is done in children's services - to safeguard the staff as well as the children.
We were talking about when it is appropriate to cuddle a child? We have to think about the age of the child, and about what other observers would think. People make assumptions, sometimes wrongly. I have mixed feelings. Sometimes a touch from a carer is the only touch a child experiences. We do not set staff up to be vulnerable, and we want service users to have control on how they are touched. There is no "gold standard". We cannot tell staff exactly what to do.
Andrew: Response of carers will be to "play safe" on touching. Then people lose the ability to do certain activities.
Steve: I would hate to think that people lose services like going swimming. We are not saying, "Stop doing something" but to have an agreed way of doing it.
Andrew: Personal care for adults is often going on in an institution. Often there is not much discussion between relations and staff.
Katrina: There are many cultural differences in this area. And what about time pressures on staff? Is this discussed?
Steve: I try to insist on one-to-one care. In the Training Pack, there is discussion of sensitivity to cultural differences.
Sally Francis from Mencap came. She made friends with everyone.
Earlier, Sally and Betty had been to the Hackney Learning Difficulties Partnership Board. Betty is a member of this. Sally was a visitor.
We talked about people with profound and multiple learning difficulties.
Betty said that we should not use jargon.
Sally explained that we were talking about people with many more difficulties in learning than most people with learning difficulties. For example: They might be unable to talk. Some are unable to walk or move parts of their bodies. Many need other people to keep them clean, make them comfortable and give them food. Some behave in a way that upsets other people.
Robert said that people should speak up for themselves. But if people cannot speak, someone has to speak for them.
Sally said that independent advocates are especially needed for people who cannot speak for themselves. Sally is an advocate and we talked about advocates we know. Hamhp would like to have a meeting about advocates for people with profound and multiple learning difficulties in Hackney.
We talked about the people we know who live in the new Homer Road and Wick Road houses. We agreed that none of them could speak up for themselves. But we remembered that Cynthia had told us about her life by using a video with Patrick and Katrina helping her to explain.
We talked about communicating with people with profound disabilities. Looking after someone is part of talking to them. We remembered talking to Kathy Sirockin by peeling her grapes and looking into her eyes as she smiled. We were told about a video of Patrick giving someone food in which they both end up laughing together.
Looking after people's body needs is called personal care. We thought this should be an important part of training workers and that they should learn to do it sensitively and to use it to develop a good relationship with people. One reason workers leave could be that they have not learnt how valuable personal care is.
Sally agreed to carry on talking about these issues at other meetings in Hackney and we will keep in contact with her. Sally and Betty may ask Hackney Partnership Board to talk about the issues.
Wick Road and Homer Road
The Commission for Social Care Inspection has made reports.
Visits to Wick Road and Homer Road Residents
Some people have been to visit friends in Homer Road and Wick Road. This is a report from one of them. We hope to have other reports.
A Report by Katrina Kushinga - 8.2.2005
I have been visiting the residents who moved from Malpas Road to Wick and Homer on a fairly regular basis since their move in March 2003.
My last visit was just after Christmas last year. On the whole everyone appears well although some individuals seem to have had some ups and downs. The residents in both Wick and Homer have looked well dressed on each of my visits and it is evident that the staff who moved with the residents from Malpas to Wick and Homer try very hard to maintain high standards in this regard.
However, at the weekends and bank holidays when I have usually made my visits, very little appears to be going on. Also it does not seem that during the week the residents are able to go out as much as they used to. Swimming does not seem to happen any more. But other activities such as massage therapy do take place regularly.
One of the difficulties of visiting Wick is that their policies do not allow me to take a resident out for a walk without a member of staff coming as well. Although this is usually offered, it sometimes appears that other activities in the home have to be rearranged to permit the walk. The reason for the policy is not clear and it does not seem to make good use of someone willing to enable an extra walk out for a resident.
When I visit, C and I usually take advantage of the residents' telephone and phone Patrick. One of the advantages of Wick Road is that they have a cordless phone. This has enabled me to pass the receiver round to all the residents. Some of the residents were not used to using the telephone because the Malpas phone was not a cordless one. It was interesting to see who would enjoy hearing a "hello" from an `old' but familiar voice. M initially seemed a bit confused or alarmed, but now he seems to have got the idea and has identified the voice, "Patrick!". The others at Wick Road cannot verbalise their recognition of the voice but several seem to listen very intently. C, of course, joins in the conversations with loud vocalisations and laughter.
Last time I visited, M drew my attention to a new drum he has bought and some other musical instruments which he was keen to use. I am told that John Ladle has been visiting M and helped to arrange these purchases.
Last Easter, I was invited to Homer Road for S's birthday party. It was nice to see that an effort had been made to invite members of the Malpas Road domestic staff with whom S had often liked spending his time at Malpas Road. It is also good to hear that H is still going to watch Banger Racing from time to time.
The sad news from Homer Road is that B who joined the ex-Malpas residents shortly after they had moved, tragically passed away last autumn. It is evident that this was a big shock for them all.
I hope I will be able to visit the residents at Wick and Homer again before long and keep up my friendship with them all.
Hamhp has moved back to the Huddleston Centre and will be meeting there on the second Thursday of every month at 7pm.
Thursday 11.12.2003: Sally Francis, District Development Officer for Mencap will visit and discuss services for people with profound disabilities and support for carers, amongst other issues. Gloria O'Flaherty, local group support officer for Mencap (North London) will also meet us, with information about Mencap's groups and campaigns, and we will have our usual pre-Christmas social.
The Mencap campaign Breaking Point argues that local authorities should provide a short break service to every family looking after a person with severe or profound learning disabilities in the family home. This should be a real break that family carers can rely on. A Breaking Point survey has revealed that six out of ten families are getting no short break service at all or one that is so minimal, it does not meet their needs.
Hamhp have been concerned for many years that the needs of people with the severest disabilities are not thought about, let alone understood or met.
In the PMLD Network many organisations and individuals have joined together to ensure that people with profound and multiple learning disabilities are valued and that policy and services meet their needs.
Sally will also talk about No Ordinary Life, a report that examined the support needs of families caring for children and adults with profound and multiple learning disabilities.
Friendships beyond Malpas
We have been discussing ways that support for and friendship with the residents of Malpas Road can be maintained now that they have moved to their much improved homes at Homer Road and Wick Road. Highlights of our discussions have included conversations with relatives of residents.
We spoke to a relative of a Homer Road resident who said he was very quiet but seems OK. He is going out with one to one support. She is unable to visit during the week because of the journey, and so visits at weekends. She does not need to make an appointment, but just turns up. On her visits she had seen one member of staff who had also been at Malpas.
The relative of a resident at Wick Road said he was very happy there and has settled down well with the support of his key care worker, who moved with him from Malpas Road. It had been unpleasant at Malpas Road before the move, largely because of the way the building was allowed to deteriorate. At Wick Road he has his own room. The garden at Wick Road is a problem, because you cannot get a wheel chair out there. However, she had been able to take him in the wheel chair for a walk round the block, and he goes shopping with the staff.
One relative thought it would be good if carers meetings could be resumed. The other said that the carers meetings had achieved their objective of establishing the new homes, so did not need to be so frequent, but "if we talk to other carers, we feel that we are not on our own".
New homes for special peopleOver twenty years ago the City and Hackney Community Health Council negotiated a better life for the children in Hackney's old Eastern Hospital. They moved to a social services hostel in Malpas Road.
Now the fourteen residents of Malpas Road are mature, middle aged adults. None have any real verbal communication though they communicate in other ways. They have a range of physical disabilities and more than half of them need wheelchairs to travel.
Now they are to have new homes, with their own rooms and more independence. Blocks of flats at Homer Road (top picture) and Wick Road (bottom picture) are almost completed. The Wick Road block has a lift and most of those who use wheelchairs will be moving there.
It is expected that people will move into Homer Road at the end of November or in December and into Wick Road in the new year, but these dates could change because of delays in the registration process.
|Susan Storrar, Director of HILT spoke at Hamhp on Thursday 9th May 2002|
Listening Books is a charity that provides a postal audio book library
service to anyone who suffers from illness or disability that makes it
impossible or difficult to hold a book, turn its pages, or read in the
usual way. They provide audio books for both leisure and learning.
Usually there is a charge, but the Peabody Community Fund has made a grant that will pay for a limited number of qualifying people in Hackney, Islington, Lambeth, Southwark, Tower Hamlets or Newham to be members free of charge.
Sponsored membership will be given on a first-come-first-served-basis, to qualifying individuals. The member can cancel at any time. There are no hidden costs.
Contact Samantha Fletcher at Listening Books to find out if you qualify.
Listening Books, 12 Lant Street, London, SE1 1QH.
Telephone 020 7407 9417. Fax 020 7403 1377
Edited by Joan Hughes
Freedom PassMany people are worried that they may lose the Freedom Pass that allows them to travel free on London transport. They have been frightened by a letter sent by Hackney Social Services.
Gaby Tobias, co-chair of City and Hackney Primary Care Trust , has talked to Social Services, who have agreed the following for applicants:
A Save Hackney's Disabled People's Freedom Pass Campaign has been set up with its own website.
According to the Hackney Gazette, there were more than 9,700 people in Hackney with a Freedom Pass. The Council sent each of them a letter setting out new criteria for renewal, which it said were "introduced by the Transport Act 2000". The new pass runs from April 2002. More than 3,000 applied for it, but 1,600 were turned down. Nine appealed. Their disability was confirmed by an occupational therapist and they received their pass.
Later on in the same article, different statistics appear. It says the council "hopes to save £151,5222 next year by cutting one in 10 of the 8,138 Freedom Pass holders".
The article also says that the cost of reassessing the passes is £50,000.
Day ServicesTed Garber and Joy Vollmer will be attending a conference on Modernising Day Services - Which Way Forward which is being organised by the "Kith and Kids Learning Disability Forum" on May 29th. This appears to involve more than the usual idea that day services without day centres are better. People who say it is "normal" to go to a different place every day will be present, but so will a range of users, carers and voluntary bodies. The conference will have workshops on meeting the needs of people with multiple and complex needs. People with the severest disabilities have been the main victims of the philosophy that says "it is normal to go somewhere different and meet completely different people every day".
Eligibility CriteriaThe following is a passage from Appendix C of Hackney Social Services Special Committee Meeting on 12.2.2002. It is about plans to make savings in Social Services in order to balance the books:
"Tighten Eligibility Criteria
The agreement of councillors was required before the plan could be adopted. There would then need to be a 9 month programme of re-assessment of all existing clients against new criteria.
He is calmer and talks with the sign language, Makaton. He is a joy to have
around and this year he received an Achiever of the Year certificate for
I just want to say what a brilliant school Ickburgh is and how Stuart's
attendance really made a difference to us as a family.
If I could give anyone Esther Rantzen's Heart of Gold, it would definitely
go to everyone at Ickburgh."
He is calmer and talks with the sign language, Makaton. He is a joy to have around and this year he received an Achiever of the Year certificate for his language.
I just want to say what a brilliant school Ickburgh is and how Stuart's attendance really made a difference to us as a family.
If I could give anyone Esther Rantzen's Heart of Gold, it would definitely go to everyone at Ickburgh."
Valuing PeopleDuring 2002 Hamhp will be discusing the issues raised by the government policy document Valuing People: A New Strategy for Learning Disability for the 21st Century
Together, we are making a web page about it.
Valuing People: A New Strategy for Learning Disability for the 21st
is the government's new learning disability strategy.
Government and local government publicity makes everything seem rosy. We
need to know the truth. The government and the local council should explain
the contradiction between rosy policies and drastic cuts in services.
Valuing People: A New Strategy for Learning Disability for the 21st Century is the government's new learning disability strategy.
Government and local government publicity makes everything seem rosy. We need to know the truth. The government and the local council should explain the contradiction between rosy policies and drastic cuts in services.
Hamhp on the webThe easiest way to find Hamhp's web pages is to type "Hamhp" into the search area and search the whole web. We seem to be the world's only Hamhp, so you should find us quickly.
As well as newsletters, the website includes information about the different groups mentioned in this newsletter - and many others. Just click on "Organisation Links" and use the index.
Adele started with NELA in February 2001, taking over from Polly Mann. She is only funded for 20 hours for Hackney. The job is only funded for one year at a time, which makes staff recruitment difficult.
She has found a general slowness in Social Services. Many users have not been allocated Care Mangers. This may be a funding issue as she has been told that the Council are waiting to fill some vacant posts - but the situation is confused. People living at Salcombe Independent Living Centre are waiting to move on.
Adele explained the principles of advocacy. "Advocacy is non-judgemental. We are not there to make a decision about a person's life. We are there to make sure the service user's voice is heard. We give silent support to those who can speak up for themselves by being present at Social Services interviews. For non-verbal people we have to do more. We have to spend a long time with the person getting to know their likes and dislikes, and then put their case to Social Services. We speak up for them."
Often, NELA is unable to help people due to lack of funding. Adele can only take on specific tasks for a person. She is not able to be someone's advocate on all issues. Many people in the borough (especially those with carers who do not speak up) are not getting proper day services and are not coming forward for advocacy.
Vince explained that, under the Direct Payments Scheme, users have money supplied direct to them and they recruit their own paid helpers etc. The Choice support worker for the Direct Payments scheme in Hackney is funded from lottery money. Lottery money has now stopped and Hackney Council have to take over and tender for staff.
At present there are seventeen Hackney people with physical difficulties and three with HIV on the direct payments scheme, but no one with learning difficulties. Choice was started in 1992, but has only worked for people with learning difficulties for two years. A different kind of support is needed to people with physical disabilities, and more resources may be needed, if they are to organise their own services under direct payments. However, the Government has said that everyone has a right to Direct Payments if they so desire - even if they are not able to administer it themselves. A support worker may need to deal with tax and insurance and other complex matters. If a family member is an appointee and works with the support worker this is an added safeguard.
People with learning difficulties do not always have a smooth transition from school to day centres. Choice helps such people. Unfortunately decisions are often left until the last minute. Choice always tells people about Direct payments, though Social Services do not always do so.
Representing YouOne of the ways that Hackney Council tries to be responsive to the needs of its citizens is by having community representatives on the Social Services Committee. These are now elected by the City and Hackney Voluntary Sector Health and Social Care Forum. Representatives receive committee papers, can attend and speak at meetings, but do not vote.
The Health and Social Care Forum represents voluntary and community organisations and groups in Hackney who have any interest in health and social care. These organisations include some groups (like Hamhp, the City and Hackney Community Health Council and the Carers Centre) in which users and carers are very active.
Representatives were elected at the Forum meeting on July 12th. (Services for people with learning difficulties and their carers do not have a specific representative). The representatives are:
The Forum launched its first Newsletter at the end of August. This says that the Forum works with local health services, the council, voluntary organisations, users and carers "to meet the real needs of local people and improve their quality of life". One of the main ways it does this is through representatives on the City and Hackney Health and Social Care Partnership Board which tries to provide unified services for City and Hackney. The idea is that everyone should work together and that council, health service and voluntary organisation services should fit in with one another.
The Forum has also set up Special Interest Groups to discuss services. These groups also elect representatives to User Group Boards of the Partnership Board. The group relevant to people with learning difficulties is on Physical Disabilities and Learning Difficulties. It is coordinated by Sanusie Seesay of Disability Hackney (Telephone 020 7932 1962).
Ted Garber has pointed out to the special interest group that services for people with learning difficulties and those for people with physical disabilities may each be too complex to be discussed together. There is a danger that one or other set of services may not be discussed properly and that users and cares will lose interest in the groups. A previous decision to have a combined Disabilities Partnership Board has been reversed. There are now to be separate Learning Difficulty and Physical Boards, with some interaction between the two. Susan Storer, of Hackney Independent Living Trust (HILT), is interested in being the representative on the Learning Difficulties Board.
Edited by Joan Hughes
May 2001Also available at:
We are worried by a list of possible savings published in the council
minutes. What do they mean? And what will they mean for the users?
The list of savings includes a "risk analysis" - we have no idea what risks
they are analysing. Is it the risk of not saving money? Or the risk of
harming people? Or the risk of being understood?
On behalf of Hamhp, Joy Vollmer has written to Fran Pearson (Chair of
Social Services) about the issues raised in this newsletter. Hamhp hears of
concerns about services from various sources, including users and carers,
and Joy's letter seeks to ascertain the facts.
She first asks about the effect of cuts made last year to services for
people with learning difficulties on them and their carers/families:
She then asks questions that seek to clarify the situation with regard to
proposed cuts for the coming financial year.
Finally Joy raises other areas of great concern:
The group, which will meet on a weekly basis for an agreed time, has places
for six to eight people.
It will be a safe place to talk, share and listen for people who
It is free and confidential and open to all.
To find out more contact
We are worried by a list of possible savings published in the council minutes. What do they mean? And what will they mean for the users?
The list of savings includes a "risk analysis" - we have no idea what risks they are analysing. Is it the risk of not saving money? Or the risk of harming people? Or the risk of being understood?
On behalf of Hamhp, Joy Vollmer has written to Fran Pearson (Chair of Social Services) about the issues raised in this newsletter. Hamhp hears of concerns about services from various sources, including users and carers, and Joy's letter seeks to ascertain the facts.
She first asks about the effect of cuts made last year to services for people with learning difficulties on them and their carers/families:
She then asks questions that seek to clarify the situation with regard to proposed cuts for the coming financial year.
Finally Joy raises other areas of great concern:
The group, which will meet on a weekly basis for an agreed time, has places for six to eight people.
It will be a safe place to talk, share and listen for people who are grieving.
It is free and confidential and open to all.
To find out more contact
Huddleston's a great placeThe Huddleston is a purpose built social centre for people with disabilities and their families. It has three floors linked by a lift that allows wheelchair users to get to any part of the building. The ground floor has a playgroup area, an open kitchen, and a hydrotherapy pool. There are offices, meeting rooms, a workshop and a toy library on the first floor, and the top floor is a rather magnificent hall that is used, amongst others, by the various youth clubs.
Any borough in Britain would be proud to have a facility like this, but as we discuss elsewhere in this newsletter, Hackney has taken drastic steps to avoid going bankrupt. These include life-threatening reductions in the funding of the Huddleston.
Huddleston Centre is dependent on Council funding for administrative overheads. Its specially adapted building is owned by the Church of England and leased to the Huddleston trustees. The lease expires soon and the trustees need some confidence about future funding if they are to negotiate a new lease.
In July 1999, the Labour/Conservative administration cut the core funding. Huddleston's £121,000 grant was cut in half. Great efforts were made by the Huddleston's users and supporters to fund raise elsewhere and to survive on a reduced income, but in March this year, the Hackney Gazette reported the Huddleston Centre would have to close.
Protests about ClosurePeople with disabilities who use the Centre protested, and held an overnight candlelit vigil on Friday 30th March. The day the Centre was due to close.
The Member of Parliament, Diane Abbott, said that "to close it and leave it standing empty is little short of vandalism. Worst of all when the centre closes, there will be no more alternative provision for the young people there.....They will have to stay at home isolated from other young people." Many Councillors, she fears, are not aware that the Huddleston Centre faces closure.
Labour Councillor Stephen Sartain also protested, writing in a letter to the Gazette:
Clinging on to lifeThe Trustees of the Huddleston Centre have to make the final decision about closure, but without financial support from Hackney Council for the running costs it seems certain that the Huddleston Centre will close completely. Like many other voluntary organisations in Hackney, Huddleston is only assured of council funding for the first quarter of this year.
Hamhp understands that Hackney Council is very concerned to avoid the Huddleston closing. Fran Pearson, chair of Social Services, has been doing a lot of work behind the scenes trying to help keep the centre open.
Hackney Gazette on 5.4.2001 reported a "dramatic meeting" at which the board of trustees narrowly voted to give the youth project three months to raise more funding. The vital playgroup for under-fives has been closed, but the reprieve means that people from nine to twenty five will continue to have a service. It also means that the Centre remains open, with the hope that its missing services will one day be replaced.
Centre Director, Derek Yardley, told the Gazette he was "euphoric", but that the hard work of raising funds now lay ahead. Over the past years Huddleston has lost its Family Support Worker, Employment Liaison Worker, Asian and Turkish Women's Groups and, now, the Playgroup. The youth work has a temporary reprieve and the long term goal must be to reclaim all aspects of the Centre and to use the building to the full benefit of Hackney.
However, the financial risks of staying open are such that three of the most active members of the Trustees felt obliged to resign. An Extraordinary General Meeting on May 3rd will consider the appointment of new trustees. Rani Ogundipi is now Acting Chair of the management committee. She tells us that firm assurance of future core funding is needed before people will risk entering into the long term commitments necessary to keep the centre open.
Rani says: "We would like to thank all who have supported campaigns to keep the centre open. Much work has to be undertaken, but we hope to be able to raise the funds necessary to ensure the future of the centre and its services for a long time to come. Please support our fundraising events. Donations will always be appreciated, no matter how small, and if you would like to volunteer your skills, services or time, in connection with these events, please contact us."
People who want to help should contact Derek Yardley or Vernon Angel at:
The Huddleston Centre
A Huddleston Poem
We are not disabled people,
Huddleston's a great place.
By the same ability token:
However poor we are,
Edited by Joan Hughes
Hamhp News resurrectedOn her new computer the Hamhp Minutes Secretary, Joan Hughes, has been designing a new Hamhp News. Drafts were distributed at the January 2001 meeting where Ted Garber was so impressed he wanted to take them immediately to local councillors. Joan pointed out that she had not given much attention to what the News said, just its layout. She is now working on the content. News items will be published on the web and then copied into her printed Newsletter.
Change of meeting placeIn October 2000 HAMHP decided to meet at the Community Health Council (CHC) from January 2001. The change was made to save money, as Hamhp has no income and the CHC offered us a free meeting space. At the November meeting at the Huddleston Centre we discussed how to put these changes into effect, including the effects on some of the people with learning difficulties who attend our meetings and need transport. Some need help with getting in or out of cars or help with walking. Ladycabs have been informed about all transport problems and are very willing to help. We have appreciated all the help the Huddleston Centre has provided. Hamhp has been holding monthly meetings there since 1982.
Successful winter partyThe Winter Party in December was very successful. This was our last meeting at the Huddleston Centre and we thanked the Huddleston Centre staff for the excellent help they had provided for us. As we left we noticed that the retirement party for the former caretaker, Lenny, was being held there the next day.
Representatives on the Community Health Council
In Summer 2000 Hamhp was asked if we had any members willing to serve on
the City and Hackney Community Health Council (CHC). Ted Garber's term of
office had ended, but there was no other Hamhp member able to stand. In the
election for members Hamhp voted for:
Your family doctor (GP)In September we had a meeting with a speaker, Steve Gilvin, Head of Primary Care for the (then) City & Hackney Primary Care Group.
Steve Gilvin explained that there are two organisations in Hackney which are coming together as one group to form a Primary Care Trust .
In Hackney the quality of services varies a lot depending upon where one goes. Some GPs have been given a course to attend to update their skills.
Two GPs are now being employed part-time in Homerton Hospital. The Primary Care Group sets a budget for the hospital, but now works more closely together and attempts to identify their problems. The GPs working in the hospital can obtain knowledge to use in their practices, which they can communicate to other GPs.
A parent commented that her GP takes part in the Out-of- Hours Co-op at
Homerton Hospital which is excellent. There is no waiting. There is
telephone advice or they say "come and see us here." Steve explained that
45 GPs got together and set this up on a rota basis. GPs work in pairs. One
sees patients who can come to the hospital and the other does the home
visits. GPs either belong to the Co-op at Homerton or have a deputising
service. Which one the patient uses, depends on which service their GP
Steve went on to say that 18% of Hackney GPs are single-handed. 15% are 2-
member surgeries (known as small practices). In total, there are 142 GPs in
Hackney. GPs will not continue to be on their own for everything in future.
If single- handed GPs can share the same building, this is an improvement
which most GPs agree to. GPs and District Nurses may be in the same
building too and can discuss some cases more fully than they can on the
telephone. However some GPs have been frustrated when attempting to work
with social services. Some have set up baby clinics, but have not been able
to get a Health Visitor to work with them.
Another comment was made that it is important to make sure that a combined
service works well everywhere. Some GPs do the minimum, some are
conscientious. In particular people with learning difficulties need
sympathetic communication from GPs. If a child is born with disabilities,
GPs are very important. The hospital does not always know where to get
essential services and equipment. GPs should know this if they are working
in a Health Centre combined with Social Services. However sometimes a
hospital gives treatment to a disabled child, but the GP does not
understand how to give follow-up treatment.
Steve agreed that we all want GPs to explain how they give treatment to
people with learning difficulties. Often the quality of care depends on
whether GPs keep their notes in order. Some Care Managers are working
alongside GPs and District Nurses, which is essential for people with
complex problems. Concern about dental services for people with learning
difficulties was raised. They may be left in pain for a long time. A parent
said that she takes her son to the London Dental Hospital and gets a very
good service. Steve confirmed that the Dental Hospital with specialist
services is best for people with learning difficulties. Local Community
Dental Services (in Health Centres) may do the more routine work.
Steve was thanked for coming to the meeting.
It was recently announced that the City & Hackney
Primary Care Trust will go ahead from 1 April 2001.
Steve went on to say that 18% of Hackney GPs are single-handed. 15% are 2- member surgeries (known as small practices). In total, there are 142 GPs in Hackney. GPs will not continue to be on their own for everything in future. If single- handed GPs can share the same building, this is an improvement which most GPs agree to. GPs and District Nurses may be in the same building too and can discuss some cases more fully than they can on the telephone. However some GPs have been frustrated when attempting to work with social services. Some have set up baby clinics, but have not been able to get a Health Visitor to work with them.
Another comment was made that it is important to make sure that a combined service works well everywhere. Some GPs do the minimum, some are conscientious. In particular people with learning difficulties need sympathetic communication from GPs. If a child is born with disabilities, GPs are very important. The hospital does not always know where to get essential services and equipment. GPs should know this if they are working in a Health Centre combined with Social Services. However sometimes a hospital gives treatment to a disabled child, but the GP does not understand how to give follow-up treatment.
Steve agreed that we all want GPs to explain how they give treatment to people with learning difficulties. Often the quality of care depends on whether GPs keep their notes in order. Some Care Managers are working alongside GPs and District Nurses, which is essential for people with complex problems. Concern about dental services for people with learning difficulties was raised. They may be left in pain for a long time. A parent said that she takes her son to the London Dental Hospital and gets a very good service. Steve confirmed that the Dental Hospital with specialist services is best for people with learning difficulties. Local Community Dental Services (in Health Centres) may do the more routine work.
Steve was thanked for coming to the meeting.
It was recently announced that the City & Hackney Primary Care Trust will go ahead from 1 April 2001.
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