The same as you?
Newsletter December 2002
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WHAT REALLY MATTERS MOST
Idem Lewis, SCLD trustee, Vice Convenor of
the Learning Disability Alliance Scotland,
member of the Scottish Executive's Users and
Carers Group.
The same as you?, is it really all about services and budgets and professionals and big meetings with fancy words and no-one who uses services sitting at the table? It is not, but sometimes it still feels that way despite all the hard work put in by so many people. What is it really all about? My fellow tenants in Key Housing want to remind people what really matters most.
- It's about my dream to grow up with the same choices as everyone else.
- It's about me being able to grow up with my family.
- It's about me having a home of my own.
- It's about me being treated as an adult.
- It's about getting a bit of support to do ordinary things.
- It's about living my life the way I want to.
- It's about me being able to see the world and all its glories.
For me it's about loving, sharing and laughter. The same as you.
We don't want or deserve to be called spassies at bus stops. We don't want or deserve the title consumers - save that for Asda or Safeway.
Good things have happened, but we need a reminder what it was supposed to be all about. Have some of us forgotten already?
IDEM LEWIS
Progress on implementing recommendations
The national review of services for people with learning disabilities, The same as you? was published in May 2000. The same as you? will help people with learning disabilities to get better lives.
Action on all 29 recommendations
There are 29 recommendations in The same as you? All of the recommendations are based on the principle that people with learning disabilities should have the same rights and opportunities as the rest of society. They should be valued members of society who are socially included.
Since The same as you? was launched there has been action on all 29 of the recommendations.
Here's what's happening with just a few.
Recommendation 1 - Partnership in Practice agreements (PiPs) to be drawn up by local authorities and Health Boards.
There is now a PiP in every local authority and Health Board area in Scotland. The PiPs set out how The same as you? will be implemented in each area. The Scottish Executive has looked at all PiPs and given feedback to the local authorities and their partners, the NHS. All of the PiPs, plus the Scottish Executive feedback and the responses will be available on the internet.
Recommendation 2 - Local authorities and Health Boards should appoint Local Area Co-ordinators.
Local area co-ordinators are being appointed in many areas across Scotland. Twenty-five local authorities, and their partners the NHS, either have or will be appointing local area co-ordinators. Three local authorities, and their partners, say they will use other means to deliver the outcomes for people with learning disabilities that local area co-ordination is meant to deliver. At the moment four local authorities, and their partners, have no plans for local area co-ordinators. The same as you? Implementation Group has circulated a paper on local area co-ordination that includes job descriptions. The paper says how local area co-ordinators should work to make things better for people with learning disabilities and their families.
Recommendation 7 - There should be a national network for people with an autistic spectrum disorder.
The Public Health Institute for Scotland has published a needs assessment report on autistic spectrum disorder (ASD). The Scottish Society for Autism and the National Autistic Society have carried out a service mapping exercise. This will tell people with ASD and their carers what services are available to them locally. This exercise will also identify gaps in services. Both pieces of work will be used to help develop a national network for people with ASD.
Recommendation 12 - All remaining long-stay hospitals for people with learning disabilities to close by 2005.
The numbers of people with learning disabilities in long-stay hospitals is going down all the time. Gogarburn has closed. Lennox Castle closed in May 2002 . The Royal Scottish National Hospital (RSNH) will be closed in 2002. Many people with learning disabilities whose home was once a hospital are now living in the community with packages of care and support tailored to meet their individual needs. There are still cases where moving into a home in the community is not an option. There are concerns that some people with learning disabilities from RSNH are being moved to hospitals in other areas. The sub group on hospital closures will monitor this development and it is hoped that more details will be included in the next newsletter.
Recommendation 9 - There should be a register of people with learning disabilities.
People with learning disabilities and their families said that they did not like the term 'register' so we changed it to 'database'. Things have moved on a lot since the recommendation in The same as you?. The database of people with learning disabilities will be joined up with all of the other arrangements for electronic information sharing by the local authorities and the NHS. Information on everyone whose care needs may be met jointly by the local authority and the NHS will, with his or her consent, have relevant information shared electronically between the local authority and the NHS. People with learning disabilities said they didn't like the database because they were 'singled out'. This is not so as all groups of people that get community care services will be included in the information sharing initiatives. Once all of the local databases of people with learning disabilities are up and running, local authorities and the NHS will be able to plan services better. We will be able to find out how The same as you? is being implemented across the country. People with learning disabilities and their families will be able to see how services in their area compare to services across Scotland.
Pace of Change - Lots of work done lots more to do!
The same as you? is a 10-year plan. It won't be possible to make everything happen right away.
Getting around 1000 people out of hospital and into the community by 2005 is an enormous amount of work. We know this from the work that was required to close Gogarburn and Lennox Castle.
Traditionally, people with learning disabilities don't get jobs after leaving school. There are limited numbers of people with learning disabilities who have a real job. Moving to a position where many people with learning disabilities leave school and get a job takes time and lots of hard work from all of the partners.
Some people are frustrated by what they see as the slow pace of change but the change is happening.
- More people with learning disabilities are getting real jobs.
- More people with learning disabilities are living independently in their own tenancies with support packages to meet their needs.
- More people with learning disabilities get independent advocacy.
- More people with learning disabilities are moving out of traditional day centres. They are doing things during the day that are stimulating and include them in the community.
- There is much more respite for carers. In Scotland in 1985, there were 436 residential short-break episodes for people with learning disabilities. In 2000, there were 13,750 residential short-break episodes. More needs to be done to develop community short breaks for people with learning disabilities.
In the future, more and more people with learning disabilities will get opportunities like those listed above.
Executive Commission's Learning Disability Research
Study into the needs of people in prison or secure accommodation.
The Scottish Executive has commissioned research into the needs of people with learning disabilities who are in prison or secure accommodation. This fulfils The same as you? recommendation 28 that 'The Scottish Executive should commission research into the number of people with learning disabilities in prison or in secure accommodation and the arrangements for assessing and providing them with care'.
The research is being done by the Scottish Development Centre for Mental Health. We do not have enough information about the needs of these people. The work will find out exactly what types of services they receive and identify any gaps in provision across health, education and welfare services. It will also help us to find out more about local good practice, so we can
improve the way needs are assessed and met for people with learning disabilities in prisons or secure accommodation throughout Scotland.
Work on the 50,000 study began at the end of September, and should be completed by the end of August 2003.
Implementation Groups
The Scottish Executive set up a National Implementation Group to help make The same as you? happen. The Users & Carers Group, which helped carry out the review, meets every 2-3 months. There is also a network of people who are responsible for the PiPs in local areas which meets regularly. If you want more information about any of these groups, contact Julie Beck on 0131 244 5491.
There are 4 people with learning disabilities on the National Implementation Group. They get one-to-one support to help them participate in meetings and the work of the group generally. The people with learning disabilities and their supporters asked for certain things to be considered regarding attending the Implementation Group. To help people with learning disabilities to be fully included in the process, extra meetings have been held to give people time to go over the agenda. Discussions have also taken place about the timing and the pace of the meetings. It is recognised that people who bring along support workers need time during the meeting to clarify certain points. There was also the suggestion that easy-read versions of any information should be available.
While these changes have helped make the meetings more inclusive for people with learning disabilities, we aim for continuous improvement in the process of involving people with learning disabilities.
There were 29 recommendations in The same as you? but it was agreed to focus on the following to begin with:
1. Local area co-ordinators
2. Hospital closures
3. Employment
These sub groups were formed and people with learning disabilities are involved in each. The groups will meet regularly to monitor progress and to look at good and bad practice.
WEBSITE
The learning disability review website has details of how the review was done and what is currently happening. You can also access a full copy and easy read version of the Report. Access the site on www.scotland.gov.uk/ldsr
IMPLEMENTING INCLUSIVENESS
Beattie Inclusiveness Projects
A key objective for Careers Scotland is to increase the number of young people with additional support needs in education, training and employment. Thirteen Beattie inclusiveness projects, managed by Careers Scotland, are now up and running across Scotland. Working with a range of local partner agencies, their objective is to support young people and to help them progress in education, training and employment. New pilot work is underway on supported employment and will be phased over the next few months, starting with Glasgow, West Lothian and Renfrewshire.
Further Education (FE) Initiatives
The Beattie Committee made several recommendations to improve support for students with additional support needs - in further education. The development work, lead by Scottish Further Education Funding Council, covers a number of areas.
The BRITE Centre, based at Stevenson College in Edinburgh was formally launched in September 2002. The new facility will play a key role in staff development as well as providing students with disabilities and learning difficulties the opportunity to access and learn through technology.
In addition to the BRITE Centre, the initiative includes:
- The development of regional training facilities at the Scottish ACCESS Centres at Aberdeen, Motherwell and Stevenson Colleges.
- The creation of a website and an innovative virtual staff-room where staff from FE colleges will be able to 'meet' and discuss specific issues.
- Funding for training of FE sector staff. The distribution and support for an assistive technology workstation for every FE college in Scotland.
Other priorities for FE include the development of college inclusiveness policies and initiatives to promote and disseminate good practice. A recent HMI publication, Moving On, looked at best practice in supporting students with additional support needs as they move from school (mainstream and specialist) to college.
Psychological services for Post-School Sector
The Beattie Committee recommended that young people should have access to psychological services after they leave school in order to support their transition to further education. At present, services are only available until young people are 19. The Executive has appointed National Development Officers to take forward this work. A major conference involving the FE sector, training providers, Careers Scotland, and psychological services took place in October 2002 to discuss this. The focus of the day was on the types of psychological services these organisations need to help them support young people more effectively and how services might be developed in the future.
Further information and regular updates on progress can be found on the Beattie website at www.scotland.gov.uk/beattie or by e-mailing the Beattie Implementation team on beattie@scotland.gsi.gov.ukor by contacting the Scottish Executive, Transitions to Work Team, Beattie Implementation Team, Europa Building, 450 Argyle Street, Glasgow G2 8LG. Telephone: 0141 242 0149
THE SCOTTISH CONSORTIUM FOR LEARNING DISABILITY - Building respect in the Scottish Community
It is just over a year since the Scottish Consortium for Learning Disability (SCLD for short) was launched at Hampden Park.
What we stand for
We want a Scotland built upon respect and we believe that people with learning disabilities have an important part to play in making that dream a reality. We want more people to listen to what they have to say. Half our trustees are people with learning disabilities and family carers. We also believe in working together - we bring together 13 partner organisations and work with lots of others.
Were you there?
- On June 11 we welcomed about 100 people to a conference called The same as who? about how services can begin to meet the needs of people with learning disabilities from black and ethnic minorities.
- We helped the Scottish Executive to launch Promoting Health, Supporting Inclusion, the national review of the contribution of all midwives and nurses to the care and support of people with learning disabilities.
Did you know?
- SCLD has just re-launched its website. Visit www.scld.org.uk for loads of information about what is happening in Scotland to implement The same as you?
- SCLD is the national training initiative for learning disability. We have a whole training programme based on the values of The same as you? Our courses range from induction to leadership training. All our courses include sessions given by people with learning disabilities and family carers. For more information visit our website or contact our Director, Lisa Curtice.
- SCLD is doing a lot to support people to implement The same as you? This year we have been telling people about what local area co-ordination is about and giving training and support to new local area co-ordinators.
How you can get involved
SCLD has working groups that help us with our work. There are chances to become a part of these. We are developing a network - called CAN - so that people can get involved as trainers, helping out at conferences, and finding out what is happening in their area about The same as you?
SCLD, Room 16, Adelphi Room, 12 Commercial Road, Glasgow G5 0PQ Telephone: 0141 418 5420 E-mail: administrator@scld.co.uk