Margaret Blackwood Housing Association is offering a new support service in the Abbeyhill and Murrayfield neighbourhood of Edinburgh.   

A Community Support Worker is now available to offer one off or occasional support to help people:

·         Find out about their housing options

·         Deal with official letter 

·         Fill in benefit forms

·         Find an appropriate support service

·         Support returning to work, education or volunteering

·         Connect to local community groups or events

For more information contact:

Laura Stobbs

Community Support Worker

Abbey Court

Margaret Blackwood Housing Association

LauraS@mbha.org.uk

0131 652 1589

People with learning disabilities are being invited to help shape some of the services they receive in the Capital over the next decade. Here is the easy read version of the report they have drawn up to achieve this.

Services for adults with learning disabilities in Edinburgh are changing.

We are making a plan for what will happen over the next ten years.

We have been asking people what they think about this plan  

HOW DID WE DO THIS?

·       We sent a leaflet to all service users

·       carers

·       We made a DVD that told people about the plan

·       We made the plan easy to read

·       We put information about the plan on the web

·       We met with service users, families and staff in small groups

·       We asked people to fill in a questionnaire

This report tells you what was said during the consultation and what we are going to do about it.

EMPLOYMENT 

THIS IS WHAT PEOPLE SAID

·        It is a good idea to help people get a job

·        Will there be enough money to do this?

·        Young people leaving school need the chance to work

·        The Council is reviewing Employment Support Services

·        The Council and NHS Lothian could offer more jobs to people with learning disabilities

·        The Council needs to make sure those who cannot work still get help

·        If people get a job they should not be worse off than getting benefits

THIS IS WHAT WE WANT TO DO

·        We will make it clear what we mean by ‘employment’.

·        We will help more people with learning disabilities find jobs

·        We will make sure people have information about how to get a job

·        We will make sure people get expert benefit advice

·        We will work with schools to help people get the skills they need

·        We need to make sure the people who are deciding how best to find jobs for people with learning disabilities listen to what people have said

TRAVEL 

THIS IS WHAT PEOPLE SAID

·        Travelling on public transport can be difficult for people with learning disabilities

·        There are many things that make independent travel difficult

·        It is good there are more spaces on buses for wheelchairs

·        Travel training needs to start in schools

·        Not all service users will be able to travel independently

·        Even if travelling with a support worker, some independence is possible

THIS IS WHAT WE WANT TO DO

·       We will help more people with learning disabilities learn to travel by themselves  

·        We will work with schools and colleges so they can learn the skills they need

·        We will find out how Telecare can make it easier for people to travel by themselves

·        We will provide information about getting help to travel

·        We will meet with bus companies to talk about the things that make it difficult for people to travel on buses

MANAGING YOUR OWN MONEY

THIS IS WHAT PEOPLE SAID

·        People like the idea of having more choice about their service

·        Some carers are worried about managing Direct Payments

·        Carers need help to manage Direct Payments

·        The Direct Payments system is not easy to use

·        Families need more information about what kind of support they can get

THIS IS WHAT WE WANT TO DO

·        We will increase the number of service users getting direct payments

·        We will make sure more people receive community based respite

·        We will help more people manage their money

·        We will try to make the Direct Payments system easier

·        We will give more information to families about what kind of support they can buy

·        We will put together a support directory

·        We will ask people about their experiences of Direct Payments

PARENTS WITH A LEARNING DISABILITY 

THIS IS WHAT PEOPLE SAID

·        Parents feel they do not get enough support

·        Parents need support early on

·        Support is needed at all stages of a child’s life.

·        Parents feel that some professionals think parents with learning disabilities will not be good parents just because they have a learning disability.

THIS IS WHAT WE WANT TO DO

·        We will fund a one year post for a support worker for parents. This will be in the Local Area Co-ordination Team

·        We will find out and tell people about ways of getting support

·        We will try to give more training to social workers about the needs of parents with learning disabilities

·        We will improve joint working with Community Learning Disability Teams and Health and Social Care Teams

ACCOMMODATION WITH SUPPORT

THIS IS WHAT PEOPLE SAID

·        People do not like the name ‘Core and Cluster’

·        Not everyone understands what core and cluster means

·        People with learning disabilities should have a choice about where they live. They should not have to live next door to each other in one or two areas

·        There needs to be different types of accommodation available

·        Accommodation needs to be near families / existing support

THIS IS WHAT WE WANT TO DO

·        We will stop using the name Core and Cluster

·         We will work with housing organisations

·        We will work out how many people need this type of accommodation.

·        We will give carers more information about Telecare

·        We will look at other models of care like Adult Placement Schemes

·        We will work together and plan with older carers

CHOICE OF SERVICES

We asked everyone to pick three services they would find most helpful. The top three were:

1. Service to manage Direct Payments / Direct Payments training for carers

2. Circles of Support

3. Healthy Living

SUPPORT FOR OLDER CARERS

THIS IS WHAT PEOPLE SAID

·        Supporting older carers is very important

·        Older carers need practical support

·        Older carers need help to plan for the future

·        Older carers like the help they get from voluntary organisations.

·        Families would like accommodation to be near them

THIS IS WHAT WE WANT TO DO

·        We will make sure we know about all the older carers of people with learning disabilities who need help

·        We will tell older carers about Adult Placement Schemes

·        We will make sure older carers have the information and support they need to continue caring

·        We will help older carers to plan for the future

·        We will make sure ‘Life Books’ are completed for people living with older carers

·        We will make sure older carers are reviewed regularly

·        We will speak to GPs about difficulties faced by older carers.

TELECARE 

THIS IS WHAT PEOPLE SAID

·        Telecare has helped some service users and their families

·        People would like more information about Telecare

·        Telecare should not be used to replace staff

THIS WHAT WE WANT TO DO

·        We will give people more information about Telecare

·        We will arrange visits for carers and service users to the Telecare House

·        We will tell families with young children about  Telecare

·        We will help more people to get Telecare

·        We will make sure that when service users use Telecare they get the help they need

·        We will tell staff about how Telecare can help people with learning disabilities

CONCLUSION

We have listened carefully to what people have said and made this part of the plan.

We will work out what the changes will cost and when and how we can make them. The changes will happen over a period of time.

We will work with everyone to make sure the plan works.

Cancer is a terrible diseas that kills 1 in 4 people. The battle against it is ongoing. And just incase you were wondering where all the money you spend in your local Cancer Research shop really goes, here are a few recent breakthroughs to give us all a bit of hope.

Scientists from Queen Mary, University of London have discovered cancer-blocking activity for genes carried on chromosome 21 - an extra copy of which is carried by people with Down’s syndrome.

The study, published in Nature*, investigated why the extra copy of chromosome 21 provides protection against the development of solid cancers.

The team found that tumour growth was reduced significantly in mice with three copies of genes from chromosome 21, compared with mice carrying two copies – the extra set of these genes boosting protection against cancer development.

They identified that a number of genes called ADAMTS1; ERG; JAM-B and PTTG11P can block the formation of blood vessels to tumours - a process called angiogenesis. This prevents nutrients reaching the tumour, in effect ‘starving it,’ stopping the cancer from growing. Two of these genes JAM-B and PTTG11P were previously unlinked to angiogenesis.

The discovery that these new genes block a protein called vascular endothelial growth factor (VEGF), which triggers new blood vessel growth, presents new targets for research into potential cancer drugs.

Lead author, Kairbaan Hodivala-Dilke, Professor of Angiogenesis at Barts and The London School of Medicine and Dentistry’s Institute of Cancer, part of Queen Mary, University of London, said:  “These exciting results provide new evidence to confirm that having three copies of certain genes on chromosome 21 is sufficient to protect against tumour growth.

“The next stage is to think about how we might be able to exploit this and use it to develop cancer treatments in the future to block tumour growth.”

Professor Kairbaan Hodivala-Dilke and her team have been studying why people with Down’s syndrome have a lower risk of developing some types of cancer for a number of years.

She added: “It’s incredibly inspiring to know that by studying the genetic make-up of people with Down’s syndrome we have been able to make important discoveries that help us understand far more about the intricate processes involved in cancer tumour growth.”

Dr Lesley Walker, director of cancer information at Cancer Research UK said: “Investigating potential drugs that ‘starve’ tumours of their blood supply is an exciting area of research and one that we are investing heavily in.

“The exciting discovery that more genes have been located on chromosome 21 which are natural cancer protectors opens up a new store of gene therapy opportunities to beat the disease.”

Luminous cells from jellyfish can be used to diagnose cancers deep inside the body, scientists have said.

The process uses the green fluorescent protein (GFP) enabling jellyfish to glow in the dark.

Researchers in North Yorkshire found it can be targeted at cancer cells allowing them to be spotted using a special camera.

A team from the Yorkshire Cancer Research Laboratory at York University has developed the procedure.

The team’s leader, Professor Norman Maitland, believes it will revolutionise the way some cancers are diagnosed.

He said: “Cancers deep within the body are difficult to spot at an early stage, and early diagnosis is critical for the successful treatment of any form of cancer.

“What we have developed is a process which involves inserting proteins derived from luminous jellyfish cells into human cancer cells.

“Then, when we illuminate the tissue, a special camera detects these proteins as they light up, indicating where the tumours are.”

The process is an extension of the work done by American chemist Dr Roger Y Tsien, who won a Nobel Prize in 2008 for taking luminous cells from the crystal jelly species of jellyfish and isolating the GFP.

Prof Maitland said: “When we heard about Dr Tsien’s work, we realised how that advance might be useful in the diagnosis of cancer.

“X-rays, for example, struggle to penetrate well deeply into tissues and bone, so diagnosing dangerous microscopic bone cancer is difficult.

“Our process should allow earlier diagnosis to take place.”

The York team’s process uses an altered form of the protein so that it shows up as red or blue, rather than its original green.

Viruses containing the proteins are targeted to home in on tiny bundles of cancer cells scattered throughout the body which are too small to be seen by conventional scanning techniques.

But the viruses grow and, while doing so, make more and more of the fluorescent proteins.

“When a specially-developed camera is switched on, the proteins just flare up and you can see where the cancer cells are.” said Prof Maitland.

“We call the process ‘Virimaging’.”

The team expects the procedure to be ready for clinical trials within five years, if the research continues to go to plan.

Prof Maitland said one problem, however, may be the availability of the specialised cameras needed for the process.

A United States company is the only one which has so far designed and built a camera system which allows the jellyfish proteins to be seen with the desired resolution so deep in the body.

This kit costs about £500,000 and Prof Maitland said he was currently raising the funds to buy one.

Differences in the brain structure of people carrying an “autism gene” may offer clues to how the condition develops, say US scientists.

Scans revealed children carrying the gene variant appeared to have more nerve cell “connections” within the frontal lobe.

They had fewer connections between this and the rest of the brain, reported Science Translational Medicine journal.

Brain research has just begun to reveal autism’s roots, a UK expert said.

One-third of the population carry the CNTNAP2 gene variant, so it does not guarantee that autism will develop, but just slightly increases the risk.

Different pathways

However, scientists at the University of California in Los Angeles believe it may influence the way the brain is “wired”.

They used functional magnetic resonance imaging (fMRI) to look for communication between different brain regions, and to measure the strength of these connections.

They scanned the brains of 32 children as they performed learning-related tasks - half had autism, and half did not.

Regardless of their diagnosis, those carrying the CNTNAP2 variant had differences in the connections within the frontal lobe of the brain itself and between the frontal lobe and the rest of the brain.

Dr Ashley Scott-Van Zeeland, who led the research, said: “The front of the brain appears to talk mostly to itself - it doesn’t communicate as much with other parts of the brain and lacks long-range connections to the back of the brain.”

“Start Quote

The causes of autism are as yet unknown, but we do know there are likely to be many factors involved, so we hope this will contribute to our understanding of this complex condition”

The researchers also spotted differences in the “wiring” between the frontal lobe and the left and right sides of the brain.

In children with the version of the gene not linked to autism risk, the pathways were linked more strongly to the left side of the brain.

In those with the “risk variant”, the pathways were different, linking the lobe strongly to both sides of the brain.

This, said the researchers, could explain why the gene variant had been linked to children who are slow in starting to talk.

Dr Scott-Van Zeeland said that if the gene variant did predict language problems, then it might be possible to design therapies which helped to “rebalance” the brain and encourage normal development.

Professor Margaret Esiri, a neuroscientist from Oxford University, said that researchers had so far “barely scratched the surface” of understanding the interplay between genes and brain development.

Her own research closely analyses a scarce supply of donated brains from both autistic and non-autistic adults and children to look for differences in structure and function.

She said: “If you understand these subtle differences, there may be ways of ‘tweaking’ them earlier in life, and bringing them back into a normal trajectory of development. Of course, this would be many years away.”

Carol Povey, from the National Autistic Society, said the study was interesting because it began to link genes thought to be involved in autism to actual changes in brain function.

She said: “The causes of autism are as yet unknown, but we do know there are likely to be many factors involved, so we hope this will contribute to our understanding of this complex condition.”

Source - BBC News Health

The help! programmes offer support for parents and carers of school-age children, young people and adults who have a recent diagnosis of an autism spectrum disorder (ASD).

Research has clearly highlighted the importance of support for parents and carers of people with an ASD soon after diagnosis. The help! programme was developed to address the initial needs of all parents - no matter what the age of their child.

We also offer the help!2 seminars for parents and carers of children and young people with ASDs who already have some basic knowledge of autism. Theseminars offer practical advice on issues such as managing anger, bullying, supporting siblings and using visual supports.

help! 1 is a support programme for parents or full time carers of children, young people or adults who have a recent diagnosis of Autism or Aspergers Syndrome.

After a child gets a diagnosis of an autism spectrum disorder (ASD), lots of parents and carers are unsure what to do next. Our help! programme gives you information about ASDs, communication,  behaviour, education and accessing services and benefits.

All help! programmes are delivered by skilled and knowledgeable NAS staff with an accent on providing easy to follow and up-to-date information in a relaxed, informal way.

We run help! programmes across the UK. Up to two people per family can attend and we provide a parent manual, including handouts and information booklets. Sessions include presentations, discussion, DVD material, and group and individual tasks.

There are several different types of programmes available:

• help! one-day programme
• help! two-day programme
• help! three-day programme
• help! six-day programme

help! 2 seminars are for parents and carers who have some basic knowledge of autism spectrum disorders. The seminars focus on practical topics such as managing anger, helping sibling and making and using visual supports.

help! 2 is aimed at parents and carers who already have some basic understanding of autism spectrum disorders (ASD). (If you would like an introduction to ASD, read more about our help! programme.)

help! 2 seminars offer information and tips on subjects of most interest to parents of school age children, young people and adults. These subjects include: 

• supporting the siblings of your child with an ASD
• managing anger in young people with Asperger syndrome
• meeting your child’s sensory needs
• anti-bullying tips
• introduction to writing Social Stories^TM
• making visual supports
• adult life (for parents with an adult son or daughter).

Each seminar lasts for four hours and up to fifteen families can attend. Seminars include presentations, group discussions, DVD material and practical activities - plus a free parent information pack.

View forthcoming help!2 seminars .

Seminars are free to parents and carers, but can be purchased by a local authority or NHS trust.

The help! programmes offer support for parents and carers of school-age children, young people and adults who have a recent diagnosis of an autism spectrum disorder (ASD).

Research has clearly highlighted the importance of support for parents and carers of people with an ASD soon after diagnosis. The help! programme was developed to address the initial needs of all parents - no matter what the age of their child.

We also offer the help!2 seminars for parents and carers of children and young people with ASDs who already have some basic knowledge of autism. Theseminars offer practical advice on issues such as managing anger, bullying, supporting siblings and using visual supports.

help! 1 is a support programme for parents or full time carers of children, young people or adults who have a recent diagnosis of Autism or Aspergers Syndrome.

After a child gets a diagnosis of an autism spectrum disorder (ASD), lots of parents and carers are unsure what to do next. Our help! programme gives you information about ASDs, communication,  behaviour, education and accessing services and benefits.

All help! programmes are delivered by skilled and knowledgeable NAS staff with an accent on providing easy to follow and up-to-date information in a relaxed, informal way.

We run help! programmes across the UK. Up to two people per family can attend and we provide a parent manual, including handouts and information booklets. Sessions include presentations, discussion, DVD material, and group and individual tasks.

There are several different types of programmes available:

• help! one-day programme
• help! two-day programme
• help! three-day programme
• help! six-day programme

help! 2 seminars are for parents and carers who have some basic knowledge of autism spectrum disorders. The seminars focus on practical topics such as managing anger, helping sibling and making and using visual supports.

help! 2 is aimed at parents and carers who already have some basic understanding of autism spectrum disorders (ASD). (If you would like an introduction to ASD, read more about our help! programme.)

help! 2 seminars offer information and tips on subjects of most interest to parents of school age children, young people and adults. These subjects include: 

• supporting the siblings of your child with an ASD
• managing anger in young people with Asperger syndrome
• meeting your child’s sensory needs
• anti-bullying tips
• introduction to writing Social Stories^TM
• making visual supports
• adult life (for parents with an adult son or daughter).

Each seminar lasts for four hours and up to fifteen families can attend. Seminars include presentations, group discussions, DVD material and practical activities - plus a free parent information pack.

View forthcoming help!2 seminars .

Seminars are free to parents and carers, but can be purchased by a local authority or NHS trust.

From October to January The National Autistic Society runs a series of programmes called help! The help! programmes offer support for parents and carers of school-age children, young people and adults who have a recent diagnosis of an autism spectrum disorder (ASD).

Research has clearly highlighted the importance of support for parents and carers of people with an ASD soon after diagnosis. The help! programme was developed to address the initial needs of all parents - no matter what the age of their child.

We also offer the help!2 seminars for parents and carers of children and young people with ASDs who already have some basic knowledge of autism. Theseminars offer practical advice on issues such as managing anger, bullying, supporting siblings and using visual supports.

help! 1 is a support programme for parents or full time carers of children, young people or adults who have been given a recent diagnosis of Autism or Asperguars Syndrome.

After a child gets a diagnosis of an autism spectrum disorder (ASD), lots of parents and carers are unsure what to do next. Our help! programme gives you information about ASDs, communication,  behaviour, education and accessing services and benefits.

All help! programmes are delivered by skilled and knowledgeable NAS staff with an accent on providing easy to follow and up-to-date information in a relaxed, informal way.

We run help! programmes across the UK. Up to two people per family can attend and we provide a parent manual, including handouts and information booklets. Sessions include presentations, discussion, DVD material, and group and individual tasks.

There are several different types of programmes available:

• help! one-day programme
• help! two-day programme
• help! three-day programme
• help! six-day programme

help! 2 seminars are for parents and carers who have some basic knowledge of autisim spectrum disorders. The seminars focus on practical topics such as managing anger, helping siblings and making and using visual supports.

help! 2 is aimed at parents and carers who already have some basic understanding of autism spectrum disorders (ASD). (If you would like an introduction to ASD, read more about our help! programme.)

help! 2  seminars offer information and tips on subjects of most interest to parents of school age children, young people and adults. These subjects include: 

• supporting the siblings of your child with an ASD
• managing anger in young people with Asperger syndrome
• meeting your child’s sensory needs
• anti-bullying tips
• introduction to writing Social Stories^TM
• making visual supports
• adult life (for parents with an adult son or daughter).

Each seminar lasts for four hours and up to fifteen families can attend. Seminars include presentations, group discussions, DVD material and practical activities - plus a free parent information pack.

View forthcoming help!2 seminars .

Seminars are free to parents and carers, but can be purchased by a local authority or NHS trust.

For those within the disabled community able bodied enough to take up driving the task its self can still be daunting. Here we’ve put together some information on learning to drive for people with learning disabilities. We hope you find it helpful and welcome any feedback, questions or queries.

Connexions Direct is a site dedicated to providing information and advice to young people on many subjects. Follow the link below to read their advice on being disabled and learning to drive: http://www.connexions-direct.com/index.cfm?pid=172&catalogueContentID=776

Direct Gov has information on everything from education to travel. Click the link to find out what medical conditons/disabilitys do and do not affect your right to drive:

http://www.direct.gov.uk/en/DisabledPeople/MotoringAndTransport/Yourvehicleandlicence/DG_10029770

Brig-Ayd Controls Ltd are manufacturers of a wide range of driving aids and wheelchair hoists giving physically challenged people more independence. To see their range of products just follow the link: www.brig-aydcontrols.co.uk

Drive Me Bananas offer driving lessons for the disabled in a specially adapted car in and around Edinburgh. For more information just click the link:

http://www.drivemebananas.co.uk/adapted.html

Off We Go! books prepare children for everyday experiences and improve language and social skills. They have proven to be of benefit for children with special needs and in particular autism, as well as any young child. The Off We Go! series support kids to partake in activities that they might otherwise find overwhelming, decrease parent stress levels, while at the same time provide a valuable learning tool.

The Off We Go! series includes the following titles: 

• Going to the Supermarket
• Going to the Dentist
• Going to the Doctor
• Going to the Hairdresser
• Going to the Restaurant
• Going Swimming
• Going to a Birthday Party
• Going to Buy Clothes
• Going to Buy Shoes
• Going to the Cinema
• Going to the Optician
• Going on a Plane

Very recently two of these titles (Going to the Dentist & Going on a Plane) have been made available as apps for the iPhone and the iPad in English and Spanish. To learn more about these apps or to download them follow the link to the Off We Go! website http://www.offwego.ie/blog/articles/147-off-we-go-apps-now-available-on-itunes-app-store.html

Assistant Manager

We are currently looking for an Assistant Manager who will assist with the development of our unique and innovative information service.

As a member of the management team, you will

• work with the Board to identify key activities, services and priorities
• keep up to date with changes in legislation and public policy, in relation to their effect on people with learning disabilities and carers
• research and develop proposals for ways in which FAIR can support people through these changes.

In addition, you will help to raise awareness of FAIR and exploit new opportunities through fundraising, marketing and communications campaigns in order to grow revenues.

Because FAIR is a frontline service, you will also

·        Deal with enquiries on a daily basis

·        Deal with follow-up work resulting from enquiries, up to and including representation and advocacy

·        Record and collect statistics on enquiries, using FAIR’s system

·        Share the work of maintaining and updating the FAIR database

·        Make regular contributions to the monthly newsletter

·        Direct and supervise staff and volunteers in the absence of the manager

·        Attend staff meetings

·        Adhere to FAIR’s confidentiality and equal opportunities policies

It is essential that you have:

·        Knowledge of the issues affecting people with learning disabilities and carers

·        Excellent communication skills

·        Excellent social skills

·        Good IT skills

·        Development work experience

 It is desirable that they have

·        Worked with people with learning disabilities

·        Experience of working in an advice service

·        Some experience of fundraising

·        Some experience of managing staff

To apply for this position, please request an application pack by email to admin@fairadvice.org.uk or by phone on 0131 662 1962. 

Deadline for applications: 08 October 2010