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|28 May 2016|
John's Jolly Walking Group
People with learning disabilities die on average 20 years earlier than the people that live around them irrespective of wealth, earning or geographical location.
Some of this is due to nearly 7 out of every 10 people with learning disabilities having other health conditions. The link of Downs Syndrome to early onset dementia and heart problems is well known. Less well known is the occurence of a physical disability, mental health conditions or long term illnesses in other people with learning disabilities.
Some of the things that would make people healthier are well known. More exercise and healthy diets. Easy to say but much harder to do.
Recent research into the Scottish Government’s “Walk Well” programme found that there was no lasting change for people with learning disabilities through using it. This was a 12 week programme that introduced people to walking in a structured way but when people with learning disabilities finished the course, they rarely had support workers in place who had the time to help them continue the walking programme.
People with learning disabilities have spoken about how they find “good food” to be more expensive and when they do try and buy cheaper natural ingredients it is hard for them to prepare cooked meals using these.
But health care is about much more than this, it is about the help from doctors, hospitals and NHS ‘24. In our last newsletter we wrote about Stephen Armstrong’s treatment in hospital. Many things went wrong for Stephen even though he had the support that people thought he needed.
Many people feel they have great treatment from the NHS. The nurses and doctors are nice and speak to them respectfully. There are health passports, both in booklet form and electronically. There are special nurses that are trained to help people with learning disabilities available all over Scotland.
But as Robert Burns once said, “facts are chiels that winna ding and downa be disputed.” Facts are stubborn. People with learning disabilities die earlier than the rest of the population, their health needs are often diagnosed late and many people have poor lifestyles.
So what’s going wrong? To be honest no one is really sure. We need you to tell us what is right and wrong for you or the people you support. We will find out what is happening all over Scotland and put the answers together to help make better plans for the future.
Our first article is about our new Health Survey. People with learning disabilities die earlier than almost every other part of the population and generally enjoy poor health. We are asking people with learning disabilities, their families and paid staff to tell us what their experience has been and what can make it better. We want to find out what lies behind the numbers. You will be able to answer a short questionnaire, tell us your story, come to meetings to talk to other people about these and share ways of making things better. You can take part at www.tinyurl.com/LDASsurvey
Our second article is about the new Care Charging consultation. Siobhan McMahon MSP has launched a new consultation on whether we need more legislation to end care charges. We are encouraging people to respond. We also have more news from the Petitions Committee.
Our third article is about the a range of measures to cut services in Edinburgh. This caused a lot of concern in Edinburgh over the summer and as we note in the article, wiser people have stopped much of these but there are still a number of worrying measures in place.
Finally there is a short note in the printed newsletter that we will be launching a national survey in the autumn of this year to find out the experience of people with learning disabilities and their families about the treatment they have had from the NHS.
All our online articles can be read aloud simply by highlighting the text and then clicking it.
The Ayrshire Stronger Together group has been working on personal Independence Payment for a while and has put together a training course to help make sure people with learning disabilities get the right help in applying for the new benefit.
From October 2015 the DWP will be asking everyone with Disability Living Allowance to apply for Personal Independence Payment. Many people with learning disabilities are worried that they may not get the help they need to apply.
Some people will be able to get professional help but many others will depend on family members and support staff to complete their forms with them. We would like to invite families and paid staff who support people with learning disabilities to a training course to help complete the application forms for the new Personal Independence Payment and to prepare for any further information that might be needed.
We have up to 20 places on each course but at this time they are only open to families from Ayrshire as the training course will be based in Kilmarnock. There is no cost to the course but they do need to book. There are more details on the leaflet.
MSP Siobhan McMahon today launched a consultation on the abolition of non-residential social care charges.The consultation was launched at the Scottish Parliament and will be open until Friday 30th January 2016.
Currently, many disabled people are being driven into poverty due to the increasing amounts of money that they have to pay as a contribution towards their social care.
Ms McMahon believes that non-residential social care is an equality and human rights issue and, therefore, should be free at the point of delivery. She also believes that the current system is unfair, because charging procedures for these care services differ considerably between local authorities.
Previously, a petition was lodged at the Scottish Parliament by the ‘Scotland Against the Care Tax’ group which was signed by 4013 people and urged the Scottish Government to abolish all local authority charges for non-residential social care services.
The consultation has received backing from many organisations including the ‘Scotland Against the Care Tax’ group, Learning Disability Alliance Scotland, and Quarriers, who were all represented at the launch event.
There were also a number of people present from across Scotland who have experienced first-hand the difficulties these charges can present to disabled people who wish to enjoy the things in life that non-disabled people take for granted.
Interesting news today from the Petitions Committee. The Clerks organised that our petition on ending social care charges for everyone be heard shortly after a petition from Amanda Kopel which was also seeking to end care charges for people with Alzheimer's and other degenerative conditions. Because the Cabinet Secretary Shona Robison had been present for an earlier petition she stayed on to comment on the care charging issues. Her news was
- Professor David Bell from Strathclyde University has been working on financial options for achieving fairer and more consistent care charges. He has now finished this work and the report is with the Scottish Government.
- The Scottish Government agree in principle that they need to take action to achieve a fairer social care charging system.
- The Scottish Government would be reforming care charges for all service users regardless of disability or condition.
- There were a number of options that the Scottish Government were considering such as Increasing the minimum income disregards or extending Free Personal Care to the under 65s
- The options that would be eventually chosen would depend on the final decisions over the budget for the next 3 years in Novembers spending reviews
- The Scottish Government proposals would be published well before the dissolution of the Scottish Parliament in March 2016
This Wednesday sees the launch of a consultation on a private members bill to abolish all social care charges and the work has begun on a number of legal cases to challenge the fundamentals of social care charging. We are hopeful that these efforts will come together to achieve real and lasting change.