Jun 032018
 

sadly neither Welsh Labour not the national DPO – Disability Wales whose funding of course comes via Welsh Labour are supporting this vital campaign.

 

Please find below an important Thunderclap that we should all get involved in to help save the Welsh Independent Living Grant, #SaveWILG. 

This grant allows disabled people with high care and support need to live independently and was introduced by the Welsh Government following the closure of the ILF. 

Unfortunately, the Welsh Government have decided to follow England’s lead and pass all responsibility for social care to Local Authorities. This cannot be allowed to happen as we all know the problem this has caused to our friends in England. This fight is important to disable people across the UK as if we manage to win the battle in Wales, it will add strength to the arguments for three tier support in England.

This is a vital and easy way for  people to get involved with the campaign. Please encourage everyone you know, to take part and spread the message that we all want to save WILG, and deserve to have our voices heard.

The more pressure we can put on the Welsh Government, the better. On June 5th, when the thunderclap is activated, I will  be in Cardiff  at the Senedd, meeting with the Petitions Committee, Minister for Children, Older People and Social Care, Huw Irranca-Davies, Mark Drakeford AM and Julie Morgan AM.

We want to flood social media, and hope you will be able to spare one minute to help us achieve this aim. If this action succeeds, there will be future thunderclaps held.

Unfortunately, Thunderclap no longer allows targeted messages to prevent individual accounts being bombarded unfairly.

The message that will be shared across Twitter and Facebook reads as follows:

Welsh Labour need  to listen to their members and Save WILG for those with high care and support needs across Wales.

Anyone wishing to add memes or postcard photos to their social media accounts, can find plenty via my website or by simply contacting me via the contact page or on social media. I can’t make it much easier for you 

Many thanks for your support, and please do not hesitate to click on the following link:

https://www.thunderclap.it/projects/70260-savewilg

***

According to Wikipedia, Thunderclap is a platform that lets individuals and companies rally people together to spread a message. The site uses a model similar to crowdfunding sites such as Kickstarter, in that if the campaign does not meet its desired number of supporters in the given time frame, the organizer receives none of the donations. This is referred to as “crowdspeaking”, as Thunderclap and its rival site Daycause use the same terminology. [2][3] Backers are required to copy the original message in tweets or social media posts.[4]

 Posted by at 20:05
May 112018
 

Annie has high support needs and was diagnosed with secondary progressive Multiple Sclerosis in  December 2009 and has become increasingly impaired.

After suffering excruciatingly painful spasticity in 2011 she spent 2 ½ months in Rehabilitation and on discharge in February 2012 was assessed by her Local Authority for care and was awarded 23 hours a week.

At the end of 2016 she collapsed and spent months last year in hospital.  They have said she will never walk again, and pain in her right arm since April has left her using a hoist since then.

But when she was reviewed on leaving hospital in May last year, her care package remained at a completely inadequate 23 hours a week and she was told she was lucky.  This despite the fact that in her current condition it scarcely gets her up in the morning.

She is now completely reliant on human support to live independently, unable to move, clean, toilet, dress, feed herself – or do anything.  She uses a hospital bed and wheelchair, and needs to be moved with a hoist by two people.

She is in constant pain, has spasms and severe spasticity yet she has been unable to access the extra hours of help she now needs.

She has no money and has had to borrow heavily from friends and family to survive and get some of the extra care she needs. This won’t continue to be possible.

Social services continue to fail to assess her needs, and have not provided her with a proper care plan since 2012. Like many others Annie has been stripped of her entitlement to legal aid due to the changes made by the Tories.

Thank you for taking the time to read this.  Any amount you can spare to help us pay for a legal opinion for Annie would help her and possibly others enormously. Any money donated and not used will go to Disabled People Against Cuts. (DPAC).

Please donate via GoFundMe or by paypal on the website. Mark any website donations for Annie.

https://www.gofundme.com/share/link/annie-needs-care-help-her-get-it

 

 

 Posted by at 20:53
Mar 192018
 
NHS facing court action over unlawful policies

Published: 19 Mar 2018

NHS organisations are facing legal action over discriminatory Continuing Healthcare policies, the Equality and Human Rights Commission warned today.

The Commission has taken its first steps in judicial review proceeding by issuing legal letters to 13 Clinical Commissioning Groups (CCGs).This follows an initial warning issued by the Commission, which highlighted concerns about NHS Continuing Healthcare (NHS CHC) policies being unlawful and breaching the human rights of patients.

If the CCGs fail to provide evidence to demonstrate that their policies are lawful, or do not take steps to review them, they will be taken to court.

The Commission has raised significant concerns about blanket NHS CHC policies having arbitrary caps on funding and failing to consider the specific needs of individual patients, such as living location and family life.

This is a serious breach of the Human Rights Act, the Public Sector Equality Duty and the Department of Health and Social Care’s own NHS CHC framework.

Rebecca Hilsenrath, Chief Executive at the Equality and Human Rights Commission, said:

‘It is utterly unacceptable that anyone should be forced into residential care when they are healthy enough to live independently and with their families. And it doesn’t make sense for individuals or communities.

‘A “one-size fits all” approach will never properly address every single individual’s healthcare needs, and NHS CHC policies are no different. This is another example of individuals being disabled by society, and prevented from living as full and independent lives as possible, as is their right. We will use our powers to ensure that the NHS thinks about this again.’

The Commission first aired concerns over discriminatory NHS CHC policies in October 2017, when it wrote to 43 CCGs demanding more information on their approach.

Following this warning, almost a quarter of those contacted are now reviewing their policies and the Commission will be writing to the others whose policies are of less concern.

It will use its formal legal powers to initiate judicial review proceedings against 13, who it determines have not considered their human rights and equality responsibilities in the way they operate their policies.

NHS CHC provide funding for care outside of hospital, either in a care home, nursing home, hospice or a person’s own home, funded by the NHS to meet physical, mental health and associated social care needs.

The letters have been sent today (19 March 2018) and the CCGs have 14 working days to respond, after which decisions about starting court proceedings will be made.

Notes to editors

The Commission will be writing to the following 13 CCGs across England:

  • Brent
  • Coventry and Rugby
  • Dudley
  • East and North Hertfordshire
  • Eastern Cheshire
  • Harrow
  • Hillingdon
  • South Cheshire
  • Vale Royal
  • West Cheshire
  • Warwickshire North
  • Lincolnshire West
  • Redditch and Bromsgrove
 Posted by at 18:38
Mar 172018
 

Dear Independent Living Campaign supporter,

You can watch footage and download the papers and briefings disseminated at the national conference on independent living organised by Disabled People Against Cuts in November 2017 here:  https://dpac.uk.net/2018/03/conference-notes-films-dpac-independent-living-campaign-conference-nov-2017/

We are also finalising a postion paper “Independent Living Support for the Future”, outlining our ideas for developing an independent living support system capable of upholding disabled people’s rights, based on the views and issues raised at the conference. Once we have a finalised version we will circulate for sign up and put in place communications and lobbying strategies to build support for our shared vision.

Updates since conference:

Disability Related Expenditure. Jenny Hurst has put together a template which you are all invited to contribute to in order to build a full picture of all the different things that can be included in DRE. Click the link below to add to it:

https://docs.google.com/document/d/1v5FT0Zyb9d61nJJlnE3Xpyl4YfqpgBrLPgqvubjCohE/edit?usp=sharing.

The Independent Living Strategy Group has also brought out a list of existing lists that can help when you are thinking what to include as DRE.

REAL’s guidance on DRE: http://www.real.org.uk/wp-content/uploads/2017/02/Reals-guidance-on-disability-related-expenditure-12-April-2017-PDF.pdf

Mencap: https://www.mencap.org.uk/advice-and-support/social-care/paying-support

DPAC: https://dpac.uk.net/2015/05/disability-related-expenses-what-could-you-claim-for/

DRUK: https://www.disabilityrightsuk.org/charging-community-care

And the government guidance on disability-related expenditure is available at: https://www.gov.uk/government/publications/care-act-statutory-guidance/care-and-support-statutory-guidance#charging-and-financial-assessment  (it’s towards the bottom of the webpage).

Simon Legg from the Spinal Injuries Association has also helpfully pointed out the 2003 practice guidance (attached) has a detailed discussion of disability-related expenditure and is arguably still valid.  He also sent a copy of a judgement which relates to disability related expenditure, also attached.

 

Campaigning against charging. Inclusion London will be organising a meeting for campaigners concerned about or involved in campaigns against charging – date to be confirmed –  to share experiences, find out about relevant legislation and explore how disabled people in different areas can more effectively co-ordinate to challenge the introduction of harsher policies, monitor their impact and campaign for the abolition of charging. If you are interested to find out more please email ellen.clifford@inclusionlondon.org.uk.

 

Lobbying government.

We believe it is important that Disabled people’s own voices are listened to within the government’s work-stream on social care for disabled adults. We have been collecting signatories a letter.

There is a Parliamentary inquiry into the long-term funding of adult social care. Inclusion London submitted evidence calling for an independent living support system funded from general taxation and free at the point of need: http://www.parliament.uk/business/committees/committees-a-z/commons-select/communities-and-local-government-committee/inquiries/parliament-2017/long-term-funding-of-adult-social-care-17-19/

 United Nations complaint. We have now heard that the complaint made under the UNCRPD Optional Protocol against the closure of the Independent Living Fund to new applicants has been accepted. The UN have written to the government who have until the middle of May 2018 to respond.

Media. In order to highlight the impact of the continuing social care crisis on disabled people, we are working with Cherylee Houston on features for Tonight and with the film-maker who produced “Dispossession: the great social housing swindle”.

 NICE guidelines on improving the experience of care and support for people using adult social care services: These are broadly positive but realistically are unlikely to change anything on their own in the terms of the cost-driven bad practice we are seeing within adult social care. Inclusion London fed back on the first draft and pleased a number of our recommendations were accepted, in particular that they now explicitly refer to the Human Rights Act which in our experience social care practitioners often do not give consideration to, but the Guidelines Committee refused to explicitly refer to the social model of disability, saying that the guidelines have been written from a social perspective so this is not necessary.  We are also disappointed that they did not make more explicit that cost concerns should not outweigh the needs and wishes of disabled people in care and support planning and assessments. https://www.nice.org.uk/guidance/ng86

 

 

 

 

 Posted by at 20:30
Mar 132018
 

In November 2017 Disabled People Against Cuts and Disabled People’s Organisations involved in the Reclaiming Our Futures Alliance held a national Independent Living Campaign conference. The aim of the day was to take stock of the key barriers to independent living that Disabled people who use adult social care services face and assess how far the situation has deteriorated in the last year but also to explore a shared vision for an independent living support system that can truly uphold our rights.

Below you can find notes and films from the day as well as copies of hand-outs and presentations.

Notes from the conference: Independent living campaign conference notes Nov 2017

Opening plenary:

 

Workshop on assessments and reviews:

Reading by Penny Pepper’s:

Workshop on campaigning for rights to independent living:

 

Closing session:

Presentation slides:
• Opening session – Ellen Clifford presentation: Slides – introduction , Mark Harrison presentation: IL Campaign Conf 25 Nov 2017 (1)
Campaigning for the rights to independent living (2)
Charging and Financial Assessment (1)
Co-operative alternatives for personal assistance

Papers disseminated at the conference:
• NHS Continuing Healthcare Cost-Caps – Where we are with Warehousing – Fleur Perry warehousing update
• Social Care is Broken Beyond Repair – So what should replace it? – Peter Beresford and Mark Harrison examine the problems and potential solutions Harrison and Beresford LB final
• The need to campaign against institutionalisation – Simone Aspis Simone blog

UN disability committee General Comment on Article 19: General Comment on Article19
Inclusion London Briefing on General Comment on Article 19: Briefing on General Comment on Article 19

Dec 092017
 
Sarah Graham – Freelance Journalist

#JournoRequest:Sarah wants to hear from disabled young adults (20-30ish) who are desperate to move out of their parents’ home but struggling to find the accessible housing they’d need to live independently.

Perhaps you’d need certain adaptations that housing providers and private landlords aren’t prepared to make, or your local authority doesn’t have enough accessible housing to meet the demand. You might even be considering buying your own place, and paying for the adaptations yourself, but that’s just not affordable right now. Whatever your situation, if you’re disabled and stuck living with mum and dad in your 20s, I’d love to hear about your experiences of trying to fly the nest.

Please email or message me if you can help – contact@sarah-graham.co.uk. It’s for a sensitive feature looking at the problems disabled millennials face accessing suitable housing – case studies do need to be happy being identified.

 Posted by at 17:28
Sep 292017
 

Many thanks to Inclusion London for this useful analysis.

The Court of Appeal’s decision in the Davey case: what it means for DDPOs and Disabled people

Luke’s appeal was dismissed.  This is a devastating outcome for him as he won’t only be stuck at home with minimal support he also risks losing his support team, who were with him for 18 years.  The outcome is also disappointing and worrying for other Disabled people, as this case sends a message to local authorities that they can implement whatever cuts they want as long as they follow the right process.

Tracey Lazard interviewed outside the Royal Courts of Justice with a man in the foreground holding a placard reading 'Right2IL'

On the 1st of September the Court of Appeal handed down its judgement in the case of Davey v Oxfordshire County Council.  In this case Luke Davey, who is a former Independent living fund recipient, challenged a 40% cut to his personal budget after the closure of the ILF.

Luke’s appeal was dismissed.  This is a devastating outcome for him as he won’t only be stuck at home with minimal support he also risks losing his support team, who were with him for 18 years.  The outcome is also disappointing and worrying for other Disabled people, as this case sends a message to local authorities that they can implement whatever cuts they want as long as they follow the right process.

To us the case also clearly demonstrated the limits of judicial review in cases where disabled people are trying to argue against professional opinions of social workers.  Judicial review does not look at whether local authority made the right decision or the best decision; it looks at whether or not the decision was lawful.

The decision

The Court of Appeal confirmed that the decision to cut Luke’s personal budget was reached as a result of a lawful process.  Largely the judges agreed with legal analyses and the findings of Mr Justice Morris, who made initial decision in the High Court. Here are some of the most important points:

  • The duty to promote wellbeing in section 1 has 2 aspects: firstly it requires local authorities to take positive steps to promote wellbeing, and secondly it requires local authorities to pay regard to circumstances listed in section 1.3 of the Care Act 2014.
  • The assessment under the Care Act 2014 is an objective assessment, done by social workers of OT’s for local authorities
  • The wishes of the disabled person may be a primary influence, but they do not amount to an overriding consideration.
  • The UN Convention on the rights of Persons with Disabilities can be used to help interpret the law (with caution), however in this case no particular ambiguity was identified and the balance between person’s wishes and LAs views has been struck in the Care Act itself.  However the Court of Appeal acknowledged that this should not prevent from this point being raised in future proceedings.
  • The judge confirmed that the council was entitled to set a pay of PAs at a lower rate as long as it reflected local market conditions and  that the law did not require it to pay for a more expensive option, which was preferred by an individual. The judges were prepared to accept social worker’s view that the rates reflected local market conditions.  This however potentially puts into questions provisions in the Care and Support Guidance which say that local authorities should choose not the cheapest option, but the one that is best value for money.  The guidance clearly says they should go for an option that better promotes wellbeing and delivers the outcomes for an individual.

Our intervention

Inclusion London intervened in this case.  We wanted to show that the case was not just about Luke’s care package.  It could have an impact on many Disabled people.  Our intervention helped to draw media attention to this case and enable us to talk about our right to independent living in mainstream media.  We also believe our intervention helped to clarify the point that local authorities have to consider what might happen in the future when there is an imminent risk of negative consequences as a result of their decisions.

Besides the fact that Luke lost and the impact this will have on his life, the biggest concern in this judgement from our point of view is the statement about intensity of judicial review in social care proceedings.  The Court of Appeal effectively warned against overzealous analyses of social care assessments.  This is worrying, because life changing decisions are made based on those assessments, and unfortunately there is no other way to properly scrutinise them.  This is why we will continue to lobby for the appeals system, which was meant to be introduced by the Care Act 2014.

The fact that local authorities at the end of the day make final decisions about our needs and how we will be supported is not new.  The law has always said this.  However many of us felt disappointed when we saw the judgement.  This firstly is because the case clearly shows that in the age of austerity, when local authorities have to find significant savings, the provisions of the Care Act about choice and control do not have teeth.  It also is disappointing for us to see how our views can so easily be overridden by professional opinions of social workers and local authorities not being properly scrutinised for some of the decisions they make.

This was the first case brought under the wellbeing duty and it clearly demonstrated the limits of this duty.  It is worth bearing in mind though that the case was mainly lost because of factual evidence. (Luke couldn’t prove that his PAs of 18 years would leave and refuse to work for less)

Lessons for DDPOs

This case clearly shows that local authorities can get away with implementing even very significant cuts if they follow the process set out in the Care Act and can give a logical explanation to their decisions as well as commiting to reviewing the situation and stepping in if things go terribly wrong.

It does not mean however the cuts cannot be challenged; we can and should do this.  Here are some of the basic things you could do to increase a chance of success in your case:

  • Know the process well and challenge when it has not been followed;
  • Ask for explanations early on, ideally with references to the law. Although local authority can submit further explanatory evidence it will be difficult to do so if it contradicts what they said before.  For example if they are suggesting a cut to your support package, ask them to explain how this will promote your wellbeing;
  • Think of evidence.  If we want to challenge cuts, the onus is on us to prove the impact.  Just a statement from a disabled person will not always be enough. The judges will most likely accept social workers view, unless it is irrational;
  • Pay attention to the assessment process, prepare and clearly explain what you mean.  Make sure to ask for a correction of all factual mistakes in the assessment document;
  • Challenge decisions: yes this case was not successful, but it cannot and should not deter others from challenging cuts to their support.

We lost this battle, but we will keep fighting.

 Posted by at 20:18
Sep 252017
 

Full story here -: https://www.disabilitynewsservice.com/disabled-activist-is-fighting-for-his-life-as-he-hands-petition-to-welsh-government/

Nathan Davies is fighting a lonely battle against the closure of the Welsh Independent Living Fund and devolution of funding to Local Authorities in Wales. Sadly the influential DPO Disability Wales saying they are unable to support his fight as it is too political.

Nathan has already been told his care and support funding would be slashed by more than half once the Welsh ILF is closed from April 2018.  This would mean Nathan could no longer take part in those community activities that are essential to his wellbeing and inclusion in society.

If you can please email any Assembly Members and ask them to retain a separate Independent Living fund in Wales. Disabled Lives Matter and the UN has said in their recent response to the periodic review of the UK that central governments are ultimately responsible for ensuring adequate funding for independent living.

If you live in Wales you can find contact details of your AM here http://www.assembly.wales/en/memhome/Pages/memhome.aspx

And if not in Wales email AM leader, Carwyn Jones Carwyn.Jones@assembly.wales

 

 Posted by at 14:31
May 042017
 

Stop Camden Council cuts to social care

·       NO hiking up care & transport charges to older and disabled people

·       NO closing Netherwood dementia centre & others

·       YES to free homecare as in Hammersmith & Fulham

Camden Adult Social Care scrutiny committee meets about these plans onMonday 8 May 2017

Town Hall, Judd Street, London WC1H 9JE

King’s Cross/Euston tube

6.15pm  join Save Netherwood Campaign, People’s Centre for Change and WinVisible outside the Town Hall

7pm in Council Chamber – our deputations will speak to councillors, please come and support.

Image may contain: 17 people, people smiling, people standing

http://archive.camdennewjournal.com/sites/all/files/nj_camden/imagecache/main_img/images/news/Netherwood.png

Watch on webcast:

https://camden.public-i.tv/core/portal/webcast_interactive/285252

More info: WinVisible 020 7482 2496 win@winvisible.org

Yes to free, quality care —  we’ve earned it!

No to charging, rationing, profiteering and neglect.

 

 Posted by at 17:12
Feb 132017
 

Meme for the Southampton Protest#CareHomesStink

 

#RightsNotTelecare

 

#SupportNotCuts

 

Details of the Protest in Southampton & Online

 

This letter has come from the leader of the council.


Dear Tim,
I appreciate that some of you prefer to demonstrate against the Labour Council rather than the Tory government. But if you are going to do this please have the decent thing and contact us and check whether the thing you are demonstrating against is true. I know we are in the era of ‘alternative’ truth and ‘false news but we do expect you to know better.

The Facts
1. The Care act came in in April last year and requires us to complete annual reviews of all those in receipt of a care package. This created an additional burden on our already stretched social workers. It was proposed and approved that the Council employ through Capita additional social workers to carry out these reviews.
2. No instruction was issued with regard to the outcome of these reviews. No incentive was given to Capita to save money we simply wanted the reviews done.
3. Capita were unable to recruit enough Social workers to complete the work and an offer was made to the ones they had to work some weekends for an extra payment (£200).
4. The vast majority of these reviews (all of which were carried out by fully qualified and registered social workers) lead to no change. Some were adjusted to change the way a service was delivered using modern technologies and these have lead to a saving to the Council. A saving that means less jobs will be cut this year and less other services reduced.
5. An appeals process exists with these assessments’ which has been used by precisely zero clients.
6. As part of our arrangement with Capita we are gradually taking over this work with our in house team working alongside Capita employees. We expect in due course to take over all these reviews.

These are the facts – so please tell me what you are demonstrating about.

Simon


So if those are the facts why do the leaked emails say – either the Labour council leader has no idea about what is happening in Southampton or -well – or he’s just downright lying. Take your pick.

1) From Sue Thomas, sent 15/9/16

Hi All,

The cavalry is on the way!!!

Have just heard from Adam Tait we have 3 new colleagues joining us on Monday, pulling the stops out to make sure they can ‘hit the road’ with you with the minim delay.

Adam is also suggesting some incentives for the Team. He is well aware of some of the difficulties we have had, and that you are giving me the best performance you are able.

But, now we need MORE!! The suggestions below are  cut & paste from Adams e-mail to me.

FROM ADAM’S E-MAIL

I’m not sure how weekend working might go down with the existing team (as a one off) but if we included these days we have an extra 4 days available for eight of the team people and two available for 11 of the team until we have TIB on 27th September. I would suggest we offer an extra incentive if any of the team are prepared to work these weekends or part of…. starting this weekend. It’s short notice but if we paid their existing rate at time and half or double time you may get some take up? I’m not sure if we would need to report these days within the MI suite but that’s not my call. An alternative might be payment of increased hours worked in the week. Again as a one off.

In addition, as the next week or so is so critical I am happy to roll out an extra incentive scheme at the earliest point whereby if a person manages to improve their performance by x% from the previous 4 week average they receive a £y bonus. 10% = £100, 20% = £200 etc. This can be measured across both productivity levels and the savings achieved. If one person improves their productivity by 20% and savings by 20% they receive a £400 bonus.

AGREED WEEK-END RATE TIME & HALF

PLEASE READ CAREFULLY AND CONTACT ME NO LATER THAN 5PM WITH YOUR RESPONSE (EVEN IF YIOU ARE NOT INTERESTED) THIS IS NOT A LONG TERM COMMITMENT – IT’S EMERGENCY FIRST AID TO ENSURE OUR SURVIVAL!!!!

If you want to discuss with me you’ve got my numbers.

Regards – Sue

Sue Thomas – Lead Practitioner,

Capita Review Team,

Adult Social Care,

Southampton City Council,

Southampton SO14 7LY


2) From Sue Thomas, 8 November 2016:

Good Morning,

Another late night last night – Conference Call. Followed by several hours ‘bashing my brains’ for answers.

PLEASE READ CAREFULLY – THIS IS VERY IMPORTANT

As you know our Productivity and the Financial Efficiencies we are making are under  great scrutiny.

Looking at all the figures in the Reports last night it was very clear that both Productivity and Efficiencies have fallen dramatically.

The senior managers who are leading this transformation want to know why it appears we are failing to realise the results in service delivery and savings they anticipated

By commissioning this Project. They in turn are being asked to explain to Councillors of SCC.

Issues such as changes to the Team, Reduced size of Team, Annual Leave, Bank Holidays etc. have all been taken into account but things still don’t add up.

I have stressed how hard you are all working – but we don’t appear to be getting the results we had during the Pilots.

As I said at the Team Meeting yesterday I think it may be about the ways in which we are working – IF IT’S NOT ABOUT HARD WORK, IT MUST BE ABOUT SMART WORK!!!

I HAVE PUT MY NECK ON ‘THE CHOPPING BLOCK’ – YOU HAVE PRODUCED THE RESULTS BEFORE, I KNOW YOU CAN AND I BELIEVE YOU WILL DELIVER THE RESULTS REQUIRED.

NOW I HAVE TO PUT MY MONEY WHERE MY MOUTH IS – PLEASE HELP ME!!!!!!

REMINDERS

  • BE ASSERTIVE WHEN MAKING APPOINTMENTS – SCC ARE REQUITRED BY LAW TO COMPLETE THESE ASSESSMENTS/REVIEWS (NEW LEGISLATION 2014)
  • AS MANY VISITS AS POSSIBLE BEGINNING OF THE WEEK – WEDNESDAY PM – RECORDING
  • CASE ‘OPEN’ DAY OF VISIT – MINIMISES DAYS CASE LEFT OPEN (ASSUMING INACTIVE/UNPRODUCTIVE)
  • CLOSE WHEN ANY REFERRALS HAVE BEEN MADE (MAX 2 DAYS)
  • L.D WILL TAKE A LITTLE LONGER – THIS IS RECOGNISED BY ALL.
  • 15 min. CALL OUT!! TELECARE –IN!!
  • ASSESS NEED NOT WANT.
  • ACTIVELY ENCOURAGE DIRECT PAYMENTS
  • CAREFUL ATTENTION WHEN RECORDING WORK SHEETS, YOUR WORK SHEETS INFORM THE WEEKLY REPORTS FOR THE DECISION MAKERS – DON’T SHOOT YOURSELF IN THE FEET!!
  • THE WORK SHEET IS CHANGING THIS WEEK PLEASE TAKE EXTRA CARE.

THINK ABOUT ASSET BASED ASSESSMENT, FOR THOSE OF YOU NOT FAMILIAR  I WILL BE SENDING INFORMATION.

We don’t have very much time to turn this situation around. if we can’t/don’t do it all the hard work you have put in so far will have been for nothing.

Not to put too fine a point on things WE ARE ALL ON THE WAY HOME.

I AM NOT ASKING YOU TO STAND BEHIND, ME I’M ASKING YOU TO STAND BESIDE ME SO WE CAN BRING THIS PROJECT TO A SUCCESSFUL (FOR ALL OF US!!) CONCLUSION TOGETHER.

Regards – Sue

Sue Thomas – Project Lead Practitioner,

Capita Review Team,

Adult Social Care,

Southampton City Council,

Southampton SO14 7LY


DPAC’s response to Simon:

  1. Capita offered their staff bonuses of up to £400 to cut people’s packages (Capita said  that this was never introduced but they haven’t denied that they made the offer).
  2. Capita’s freelance social workers were paid more than £1,000 a week (after tax) and put up in three-star hotels while they were encouraged to cut people’s packages.
  3. The emails clearly show that they were asked by the council to produce savings (ie cuts).
  4. The Council Leader says “. Some were adjusted to change the way a service was delivered using modern technologies and these have lead to a saving to the Council.” We do not believe Telecare is an acceptable alternative to human support and nor are packs of incontinence pads. If the council leader thinks the following email from a Capita manager is acceptable, then he should be ashamed of himself and needs to resign: The manager suggested an “extra incentive” for the team if they could improve on their previous “performance” and suggested that the bonus “can be measured across both productivity levels and the savings achieved. If one person improves their productivity by 20 per cent and savings by 20 per cent they receive a £400 bonus.” The council never commented on the ‘extra incentive’ email,  we can’t think why not.
  5. Does he also think the other email that was sent by capita to their team is acceptable? “The senior managers [from the council] who are leading this transformation want to know why it appears we are failing to realise the results in service delivery and savings they anticipated by commissioning this project. They in turn are being asked to explain to Councillors of SCC [Southampton City Council].”
  6. Another thing to note is that the whistle-blower said that it was the service-users with no support networks to advocate on their behalf with the council who were often the ones who were having their packages cut. This might explain why there have not been any appeals (if that’s true).
  7. I suspect that, if you take away the care packages that included residential care (which are almost impossible to cut), the proportion of direct payments packages that were cut is significant.
  8. I notice the council leader says that ‘No incentive was given to Capita to save money’. That doesn’t mean that they didn’t tell Capita that they wanted them to save money (which they did). My understanding is that Capita knew they would lose the contract if they didn’t make those savings. That seems like an incentive to me…
 Posted by at 14:24
Nov 202016
 

For an ongoing legal challenge we urgently need to hear from anyone whose direct payment rates haven’t increased for years and who use agency carers and have been told by the agency that they can’t fully meet their needs because the hourly rate is not high enough.

We will need to pass contact details onto the solicitor dealing with this case so please could you add a phone number. You can email us at mail@dpac.uk.net

 

 Posted by at 16:29
Oct 242016
 

I’m Martyn and I sit on the NUS (National Union of Students) Disabled Students Committee.

This Wednesday (26th October) from 1pm, we will be launching a new campaign where we will be fighting the high prescription costs that the NHS has been charging over the last few years. While this area of work will mainly be focusing on students, we will also be looking at the impact that these prescription costs have on the general public as well as fighting the charges to either have them scrapped or heavily reduced.

The current cost of an NHS prescription is £8.40; and in the last five years alone medication costs have increased over £1. When you are on no or a limited income, this is a charge that is not needed and can result in an even greater financial pressure for us to just maintain a basic level of health. Furthermore it is bad enough when you have to pay this once, but when you have to pay this every month for several items the cost soon mounts up. Add on other costs such as optical and dental charges and this annual total can be too much for people on a decent income to afford, let alone disabled people.

Even though there are some financial options for saving money such as pre-payment certificates, this is still not enough. Similarly a few of us are lucky to be exempt from these charges for a variety of reasons, however the majority of us don’t qualify for this. With the increasing cuts that the government are placing on us, this is becoming even harder to get.

As such, we are launching and running the cut prescription costs campaign and it will be great if as many of you can support us as much as you can. From 1pm this Wednesday, it would be amazing if you could take to social media using the hashtag #freeprescriptions to both promote the campaign and share your experiences of prescription costs and having an impairment. There will also be further information coming shortly on the different things that we will be doing and working on in order to fight the prescription charges and have them cut. This will also be an indirect fight at the cuts that the government have been imposing on people like us who are disabled. Again, it will be great if you could support us and get involved with it. The more people there are, the stronger we can be and the more likely it is that we will win.

Furthermore, on November 19th, NUS and UCU will be marching through London against many different issues that we are facing. Disabled people’s issues such as these will be at the forefront of the demo. For further information, see NUS National Demo on Facebook or Google search it.

If anyone has any questions, wants more information or wants to be kept in the loop with what we are doing, feel free to drop me an email at: M.Brown18@uni.brighton.ac.uk

Our website is http://www.prescriptionchargescoalition.org.uk/

I will be keeping DPAC notified of everything that we are doing so that you don’t miss out on this campaign including any information and so that you can get involved with what we are doing.

I hope that many of you can get involved in some way. It will be amazing if you can take to social media from Wednesday at 1pm of promote our campaign AND share your experiences!

 

 

 Posted by at 18:28
Oct 212016
 

As some of you will know there were changes in Blue Badge entitlement as a result of the introduction of PIP which meant that anyone who could walk regardless of other impairments such as Autism, MH or visual impairment were no longer able to qualify for a Blue Badge.

This change affected one of our supporters whose son had previously been entitled to a Blue Badge for around 30 years and the Local Authority involved refused to renew their badge when it ran out earlier this year. The result of that has been that the person became virtually housebound as he frequently had meltdowns and his PAs needed to be able to get him into the car quickly.

We referred this person to one of the solicitors we often work with Louise Whitfield of Deighton Pierce Glynn and we are delighted to report a very successful outcome.

Not only have the Local Authority backed down and renewed the Blue Badge but even without the case having to go to court The Department for Transport have agreed to carry out a review of the entire Blue Badge policy and its approach towards people with “non-physical disabilities.

The DfT have said: “I can confirm that the review process has now begun internally. The Department’s Blue Badge policy team is undertaking the review. They intend to involve the Department for Work & Pensions, Department for Health, lawyers, local authorities, DPTAC, disability organisations and mental health experts.  

They will look at how the scheme works for people with non-physical disabilities, with a view to ensuring that equalities issues are addressed and that the scheme continues to be sustainable for disabled people. Following the initial work, a public consultation is likely. Local authorities are also likely to need fresh guidance. It is not possible to give timescales at this stage but further information on the review will be provided in due course.”

 

 

 Posted by at 20:38
Dec 312015
 

Independent Living Fighting Fund – donations needed now to support Disabled people hit by the closure of the ILF fight cuts to vital day to day support

DPAC is asking for donations for an Independent Living Fighting Fund to support individual Disabled people to challenge cuts to their social care support packages following closure of the ILF. The ILF campaigners fought fiercely against the closure, taking their protest right to the doors of the House of Commons chamber, exposing to the world the disgraceful way the UK government is treating its Disabled citizens. The Fund finally closed on 30 June but the fight is far from over. Disabled people hit by the closure need solidarity now more than ever as the cuts we all fought so hard to prevent start to kick in.

The government said the closure of the ILF was a transfer not a cut (http://www.theguardian.com/society/2015/jun/11/impact-of-changes-to-disability-benefits). This was a lie. Some notable Councils such as Hammersmith and Fulham have committed to protecting people’s support packages in the short-term but in other areas serious cuts are already starting to happen as former ILF recipients are re-assessed to determine the level of social care support their Local Authorities will continue to fund. In Waltham Forest for example nearly 90% of former ILF recipients have had their support package cut as a result of the closure of the ILF, with more than a quarter having a cut of 50% or more (http://www.disabilitynewsservice.com/independent-living-fund-shocking-drop-in-support-after-ilf-closure/).

Cuts of this level mean robbing Disabled people of independence, dignity and equality. It also places people at risk as tragically evidenced by the case of Amanda Richard (http://www.dailymail.co.uk/news/article-3266218/Disabled-mother-died-house-fire-24-hour-care-cut.html) who died in a house fire in Coventry after her support hours were cut. Forcing use of incontinence pads on Disabled people who aren’t incontinent is emerging as one common tactic, as is blanket removal of night-time support and increasing expectations on, often elderly, family members and neighbours. One former ILF recipient was told that if she wanted to continue attending her community choir, other members of the choir could assist with her physical needs in place of needing paid support hours. The reassessment of another made a recommendation for behaviour therapy in order to cope with the removal of their night-time support following closure of the ILF.

Disabled campaigners warned that the closure of the ILF signalled the end of independent living for Disabled people. Local Authority administered care and support has proven itself unable to consistently provide Disabled people with adequate support to live, work and study in the community with the same chances as non-Disabled people. The current crisis in social care funding means things are only getting worse as Councils consult on further cuts to community support (http://www.disabilitynewsservice.com/council-is-trying-to-push-through-care-cuts-without-proper-scrutiny/), meanwhile investing in the building of new ‘super care homes’ to house Disabled people en masse (http://www.disabilitynewsservice.com/threat-to-independent-living-as-council-plots-raid-on-high-cost-care/).

Having lost the legal challenge to quash the decision to close the ILF it is now imperative that support is available for each former ILF recipient at risk of cuts to essential support. There are a number of dedicated solicitors committed to providing legal advice, however changes to legal aid mean that some Disabled people are no longer eligible yet not in a situation where they can fund the legal action they need to challenge what is happening. It is also true that we cannot reach every former ILF recipient affected and we also know that many are too frightened to speak out for fear of losing what support they have got. Legal challenges are an important way of testing out the rights of former ILF recipients under the Care Act 2014 and making examples out of Local Authorities that are not meeting their legal duties.

This is why we need a fighting fund available to support legal challenges by former ILF recipients not eligible for legal aid.

What you can do:

  • Donate to the fighting fund. We have cases that need to be actioned in early January so the sooner you can give the better. To donate go through DPAC’s paypal or contact us via mail@dpac.uk.net for details for a BACS transfer. Include “ILF FF” as the reference.
  • Circulate this post to your friends, family and fellow campaigners asking them to donate too.
  • Donate through gofundme at https://www.gofundme.com/9up7iw
Jun 302015
 

 With thanks to Kate B Published on Jun 30, 2015

TRANSCRIPT

00.00 – 00.19

Today is a very, very sad and tragic day and I think some of us are starting to cry up the front here, because this has been a long campaign and it has been so important to so many people because it means so much, but this isn’t the end and I think what last Wednesday showed is that disabled people are strong when we unite with our allies, we fight back and we give them hell.

00.20

Save the ILF!

00.32

Whoa boy, Whoa.
I come in peace with my horse to save the ILF. We are fighting for independent living for disabled people in the UK in 2015. Can you believe that?

No.

We have had enough. The Independent Living Fund closes tomorrow and we are not going away. We are going to fight on.

1.05

The ILF has given me freedom. It has given me indpendence, to live my life the way I choose without being reliant on friends or family. Without being stuck to a regimented regime of getting up in the morning when it suits other people, to go to bed at 9 o’clock, I was 22 and I had to go to bed at nine o’clock, can you imagine. I was told when I could go to the toilet, once a day at one o’clock, if I wasn’t there on time then tough, I’d have to wait until a later call that evening. It’s just not just me, it’s thousands of people out there who are subjected to this.

1.39

This is from Leanne. Hi all, I wish I could be with you all today but unfortunately, I can’t but please know that I am with you all in spirit, this is not the end, it is just the beginning.

1.54

SINGING

2.07

There used to be a time when governments, particularly when the ILF came in when they were able to at least talk about independent living with a straight face and now when they do it’s very much with a forked tongue. When the ILF closes today, it is more than just the closure of a fund. I think it signifies very much the end of an idea and that idea was that society was very much prepared to meet its responsibilities to make sure that equality of opportunity was something more than words. And we took tangible steps like the Independent Living Fund which got people real lives beyond looking out the window and watching the world pass them by.

Jun 302015
 

It is often said that the Queen is special because she has two birthdays. But in fact, there are another 18,000 people who have two birthdays: the day they were born, and the day they received their first ILF payment.

My first ILF birthday was in 1988, when the Independent Living Fund was introduced. For people with high support needs, it was a great birthday, changing our lives overnight: we became part of our communities, went to college, got jobs, made friends, and generally did the things that non-disabled people take for granted. I met Mike and Darren who have become not only my personal assistants but also life-long friends.

ILF was a springboard for a new life, whereas Direct Payments are a safety net. Direct payments help you out of bed in the morning. ILF gave you a reason to do so. My fear is that we are going back to the days without hope or purpose.

In 1964, I became disabled. Not by being involved in an accident or being ill. I became disabled with one simple sentence from a consultant: “Mr and Mrs Punton, I am sorry to have to tell you but your child has got cerebral palsy.” From that moment, society believed that I had no purpose or future and prescribed special school followed by a life sentence in an institution. My parents disagreed, and I remember my Dad saying, “well, it is not rocket science that you shouldn’t let other people govern what you do.” And my Dad should know, because he was a rocket scientist!

But even so, I was still forced to live the life that society prescribed.

Then, in 1988, three things happened. Thirdly, I got my first job. Secondly, I moved into my first flat. Firstly, and probably most importantly, I applied and was accepted for ILF.

Without the first, I am sure the other two would not have been achievable. The ILF changed my life. It gave me access to the wider community of Birmingham and beyond. It allowed me to meet fellow like-minded people who taught me how to see myself in a different light and introduced me to the concept of social justice. It allowed me to work, start my own community interest company, and empower other people. I even stood as a candidate for parliament at the last election. Fortunately, the wisdom of the people prevailed! But because of ILF and the British democratic process, it is possible for me to sit here and speak to you. The question is, will Robert Punton the younger be able to do the same?

ILF has changed our lives, and how we see life. I am desperately sad that the decision of 2010 meant that an opportunity open to all was suddenly closed, which has led to it being labelled elitist. That was not the original intent or purpose.

On the 19th June 2015, we received our final instalments of ILF.  My concern, and the concern of thousands like me, is that come the first of August, the restrictions of the new definition of community care, will not allow me to continue to participate in my community and I will find myself returning to the lifestyle of pre-1988. If you will allow me a bit of poetic licence, I do not wish to return to the shadows of society but want to help light my community.

I would like to finish with a quote from Antoine De Saint-Exupery “The notion of looking on at life has always been hateful to me. What am I if I am not a participant? In order to be, I must participate.”

Please allow me and many like me the opportunity to participate.

 

 

 

 Posted by at 18:19
Jun 302015
 

Reposted  from www.frameworkinclusion.uk with thanks

Today (30th June 2015) the Independent Living Fund is officially closed at midnight by a heartless Conservative Government –the working concept of independent living is effectively silenced. A fine campaign was, and will continue to be fought by ILF users and Disabled People against Cuts. On the 24th June ILF users and DPAC stormed the parliament in scenes previously unwitnessed in the British Parliament, but the fight began a long time before that day.  The fight for independent living for disabled people has been ongoing for decades; the fight to #saveilf began in 2010 when DPAC asked those affected by the closure to new users to come forward for a court case against the Government.

Disabled people have always had to fight for their human rights and equality. People marvel at the number of demos and direct actions that have been carried out, but its what disabled people have always needed to do. The ILF campaign has been a huge success in alerting the public, the press and TV nationally and internationally to the intense cruelty of a Government who declare they will support those in greatest need and simultaneously close the very efficient ILF which was doing just that. The closure makes no economic sense ILF had running costs of 2% while cash starved local authorities have an average of 16% running costs. On the same day as the closure a #disability confident event was being run in Swansea –this is beyond ironic and highlights the theatre of duplicity that this Government engage in. While ILF users face cuts in support, sometimes of up to 70% or face the fear of being institutionalised, while they face the loss of jobs, staff, PAs, education and life-our Government preaches #disabilityconfident .

We want to pay homage to all those that protested on the streets and online to #saveILF, as many others have said – this is not over- we go on fighting!  We will take back independent living on our terms so that it can never taken from us again- that work begins now.

It is a sad day today, but it also one of pride for the dignity, force and dedication disabled people and our allies have shown in the fight for ILF- the fight for independent living will continue, the continued exposure of what the Conservative Government have done to disabled people will be shouted loud and clear as we join with more and more allies in solidarity against the evil that is being done to us under the myth of austerity -our rage like our strength will grow till the human rights we deserve are ours.

Downing Street, London, UK. 30th June, 2015.  On the day the Independent Living Fund (ILF) closes and organised by Disabled People Against Cuts (DPAC), ILF recipients, campaigners and sympathisers meet outside Downing Street to hand over petitions calling on the Prime Minister to protect disabled people’s right to independent living. Over 25,000 signatures have been collected online supported by videos made by actors of Coronation Street and also during the Graeae Theatre Company’s 2014 UK Tour of The Threepenny Opera. After laying a wreath for the ILF, Schimmel, the battle horse of the Threepenny Opera led a march to the Houses of Parliament to continue the fight for dignity and equality. Last week, DPAC activists clashed with police inside the Houses of Parliament. Pictured:  A RIP ILF wreath was laid outside Downing Street. // Lee Thomas, Flat 47a Park East Building, Bow Quarter, London, E3 2UT. Tel. 07784142973. Email: leepthomas@gmail.com. www.leept.co.uk (0000635435)

Downing Street, London, UK. 30th June, 2015. On the day the Independent Living Fund (ILF) closes and organised by Disabled People Against Cuts (DPAC), ILF recipients, campaigners and sympathisers meet outside Downing Street to hand over petitions calling on the Prime Minister to protect disabled people’s right to independent living. Over 25,000 signatures have been collected online supported by videos made by actors of Coronation Street and also during the Graeae Theatre Company’s 2014 UK Tour of The Threepenny Opera. After laying a wreath for the ILF, Schimmel, the battle horse of the Threepenny Opera led a march to the Houses of Parliament to continue the fight for dignity and equality. Last week, DPAC activists clashed with police inside the Houses of Parliament. Pictured: A RIP ILF wreath was laid outside Downing Street. // Lee Thomas, Flat 47a Park East Building, Bow Quarter, London, E3 2UT. Tel. 07784142973. Email: leepthomas@gmail.com. www.leept.co.uk (0000635435)

 Posted by at 18:03
Jun 282015
 

On 30th June, the day the ILF closes, ILF recipients, campaigners and Allies will meet outside Downing Street to hand over petitions calling on the Prime Minister to protect Disabled people’s right to independent living. Over 25,000 signatures have been collected online (supported by the brilliant video made by the stars of Coronation Street) and also during the Graeae Theatre Company’s 2014 UK Tour of The Threepenny Opera.

After laying a wreath for the ILF, Schimmel, the equine star and proud battle horse of the Threepenny Opera will lead a march to the Houses of Parliament to continue the fight for dignity and equality.

But this isn’t theatre… It’s real and it’s our lives.

Join us in person or show your support on social media with the hashtag #SaveILF, to say “Today marks the closure of the ILF. This terrible action is wrong but the battle to protect our right to Independent Living will go on. For disabled people and for everyone who cares about fairness and social justice.”

Meet 11.30am outside Downing Street.

Jun 252015
 

Freedom of Information requests asking the following questions were sent out on 15th April to 151 English Local Authorities:

Q1 Will you be ring fencing the lF money passed to you to: –
A) Individual ILF users
B) Adult Social Care
C) No ring-fence at all

Q2 Have you received the details of how much money you are being allocated and if so how much?

Q3 When will be starting reassessments of ILF users and wjen do you anticipate completing those assessments?

Responses were received from 147.

At the time of responding to the FOIs 12 said a decision had not yet been made as to how they will use the money with 2 if these explaining that they were waiting for confirmation of the amount of monies they will be receiving from central government before they decide.
31 said they will not be ring-fencing at all while 60 have decided to ring-fence to their Adult Social Care budget. 3 LAs will be ring-fencing to individual ILF recipients for a set amount of time (Camden for three months and Enfield and Slough for six months) while 9 said they will ring- fence individual awards until review and reassessment of individual support packages over the course of the nine months.
28 LAs responded that they will be ring-fencing to individual ILF users up until the end of March 2016. Those Local Authorities are Bath, Bedford, Birmingham, City of London, Cornwall, Derbyshire, Greenwich, Hammersmith and Fulham, Hartlepool, Herefordshire, Hertfordshire, Hounslow, Islington, Kingston, Lambeth, Lewisham, Medway, Merton, Middlesbrough, Richmond, Rutland, Shropshire, South Gloucestershire, Southend, Stockport, Trafford, Wokingham and York.

88 out of the 147 Local Authorities who responded said they had not received details about how much money will be transferred from central government. 41 said they have an indicative amount they are working to based on the amount paid to ILF users now minus the 5% “attrition rate” the government will be top slicing. Only 15 said yes they do know how much they will be getting.

Most LAs (78) are aiming to have completed reassessments of all ILF recipients in their area before 30 June 2015. 30 do not have a timescale for completion while 17 LAs have set a target date later within the next nine months. 12 LAs said reassessments would be completed between July 2015 and March 2016. 7 said they had already completed theirs.

For those LAs who said they had completed their reassessments it was not clear whether all of them were referring to reassessments to calculate the support package ILF recipients will receive from the LA after transfer from the ILF or whether they had answered the question in relation to the joint transfer reviews with ILF assessors which were conducted as part of the transition process.

Some LAs who have committed to ring-fencing such as Stockport, Islington and Kingston have also completed their reassessments. Others such as South Gloucestershire will be reassessing over the next nine months.

For more information about these FOIs and the findings contact mail@dpac.uk.net or ellen.clifford@inclusionlondon.co.uk

May 252015
 

Independent Living Fund

Frequently Asked Questions for Independent Living Fund ( ILF ) users and other people with High Support Needs

This has been written for people who do not have a legal background. However, any individual who is considering legal action in relation to problems with their support should not rely only on this guide but should seek specialist advice, including legal advice.

These FAQs have been prepared by Kate Whittaker[1] together with DPAC supporters who are ILF users, Inclusion London and Disability Sheffield Centre for Independent Living. Individuals and local groups are welcome to re-use extracts and are free to copy it and send it round by email. If extracts of the paper are used in other publications please state that the content was taken from this guide.

The full document can be downloaded from

http://www.inclusionlondon.co.uk/Independent-Living-Fund

[1] Kate is a consultant solicitor at Scott-Moncrieff & Associates, a national firm of solicitors specialising in community care, public law, mental capacity and other civil liberties work. Scott-Moncrieff & Associates have a franchise with the Legal Aid Agency to provide legal aid work in these areas.  Kate also provides independent legal consultancy and training. She specialises in cases involving disabled adults and children and others who need care and support from public bodies. As well as working as a solicitor Kate works closely with a number of disabled people’s organisations providing advocacy and other services, including Disability Sheffield where she is a trustee.

 Posted by at 20:22
May 172015
 

If you get care funding from your local council this is often not free and you will have to have a financial assessment to see how much they will ask you to pay towards your care. In order to reduce the amount you have to pay for your care here is a list of Disability Related Expenses which they should disregard as available income, thus reducing the amount they ask you to pay.

These are not costs you can claim for.

This is not an exhaustive list and if there are any glaring omissions please let us know.

On the ILF email group we’ve been chatting about Disability Related Expenditure and I have collated people’s suggestions which have been very helpful.

 

It was suggested that to prove something is a “disability related expenditure”, not an expense that non – disabled people would also have, we could also give the reason why someone says that it is “disability related” e.g you could argue that a food processor is a “disability related” expense if you have an impairment which causes difficulties with chopping fruit/vegetables – by having the food processor it means that you don’t have to rely on another person to help you preparing / making meals. (although this example is useful bear in mind that it could lead to your care funding being reduced if social services decided the food processor meant you didn’t need any other support)

 

You could argue that, as a visually impaired person, you need a large print crossword book, which costs more than a regular crossword book. The difference in price would be the disability related expenditure.

 

A lot of councils will not take transport cost into account because they can’t take the mobility component into account – but if you can demonstrate that your full mobility component goes on the hire of your vehicle, then you can argue that fuel costs are a disability related expenditure as there is no other suitable alternative transport.

 

There are definitely many expenses that people don’t even think of, or expenses that people find hard to justify to the council – so giving a list of expenditure with reasons why they are “disability related” can often swing it.

 

And here are some list

 

Disability related expenditure list

Wheelchair insurance

Community Alarm Electric and gas 30 % ( Heating, Laundry due to arthritis/pain/health)

 

Electrical Gadgets – all of which use more electricity then non-disabled people would need to use

Recliner chair

Mobile – needed for safety reasons

Computer/Broadband – social/voluntary activities /computer equipment (mouse/dropped regularly and needing replacement)

NHS Bed

Stair lifts

Door opener/Intercom/remote control door opener

Two Closimat toilets

Wheel chair charging

Mobile phone charges

Adapted Car – use extra diesel for adaptations i.e. ramp, drivers seat, door openers

Health insurance

 

Replacement Equipment aids Costs
Heat pads

Hot water bottles

Bedding

Cushions

Lap Trays – activities/meals/computer

Pillows

Special mattress

Clothes

Wheel chair covers

Tens Machine – Batteries & Pad

 

PA Costs

– Hand wash

– Alcohol gel

– Toilet roll

– Hot water

– Kettle

– Drinks

– Protective/medical gloves and aprons

– Transport costs in order to escort on public transport

– Breakages

– Holiday costs of taking PA as well – 1 week allowed

 

 Live in Carer potential costs

New Carpet

Electric costs

Gas costs

Laundry
Showers

Bedding

Food

 

Heath/Medical

Travel to GP, Nurse and hospital appointments

Hospital
– Neurology

– Eye Clinic

– Euro gynaecology

– Pain clinic

– Operations

– Chiropody

 

– Antiseptic Creams

 

General Outgoings

Electric

Gas

TV costs

Shopping – internet deliveries (again be careful with this as social services may say you don’t need care to go shopping and point out you need someone to put food away for you anytime within a 2 hour delivery slot).

Food costs and dietary needs including more frequent small meals or meals which may need to be left for people to reheat.

Extra costs of things like clothes and shoes – the difference between cheap ones -from-primark and something-which-actually-works.

Extra washing powder, more expensive washing powders or fabric softeners.

Pet insurance if an assistance dog

Rent above levels paid in benefits

Mortgage payments if property is larger than a non-disabled person would need. ie. room needed for PA or equipment storage

Water rates

Household insurance for appliances relating to impairment

Servicing of any aids or equipment

Wheelchair insurance

Gardening

Decorating

Having to put money aside for future needs eg. repairs to equipment, deposit for Motability vehicle etc ( look at last 2-3 years ).

 

There is advice on the Age UK website, of which this is an extract:

Taking disability-related expenditure into account

If the local authority decides to take into account your disability-related benefits, it must also take into account your disability-related expenditure in the means test.

This is confirmed in Annex C of the statutory guidance where it is stated that you should be allowed to keep enough benefit to pay for necessary disability related expenditure to meet any needs that are not being met by the local authority. A similar requirement is made in the charging regulations.

 

Some local authorities disregard set amounts to take account of disability- related expenditure partly to avoid having to ask questions that might be considered intrusive. The amount that is disregarded varies from authority to authority. However if you consider your disability related costs are greater than this set amount you can ask for a full assessment of your costs.

 

The statutory guidance provides an indicative list of disability-related expenditure examples. It is not possible for the list to be comprehensive as it will vary from person to person. When being assessed to see how much you can pay, you should consider everything you have to buy because of your disability. This could, for example, include:

 

lextra washing, or special washing power and conditioner for delicate skin;

lcommunity alarms (pendant or wrist);
lspecial diet;
lspecial clothing or footwear (or extra wear and tear);

ladditional bedding;
lextra heating costs;
lgardening;
lhousehold maintenance (if you would normally have done it yourself);

lany cleaning (if not part of your care plan);

linternet access;
lany care that social services do not meet;
lbuying and maintaining disability-related equipment; or

Factsheet 46lApril 2015
Paying for care and support at home

22 of 48

lany transport costs (both for essential visits to the doctor or hospital, but also to keep up social contacts).

 

It can be difficult to prove you have extra costs if you have not actually incurred those expenses, for example, if you have not put the heating on for fear of large bills, or are not following a special diet because of the cost. Local authorities should work out an amount considered to be normal expenditure on heating, for example, for your area and type of housing to assist them in their response to if you claim disability-related expenditure in this context, or what you would spend if you weren’t avoiding it out of fear of high expenditure.

 

There may be other costs that should be accepted.

The courts have confirmed that local authorities should not be inflexible but should always consider individual circumstances. For example, an authority should not adopt a blanket policy of refusing to acknowledge any payments made to close relatives, as there may exceptional reasons for a particular arrangement. In one case the local authority was criticised for not properly carrying out an assessment of the person’s disability related expenditure by doing a home visit, and for rejecting some items of expenditure such as swimming lessons and paying the carer to accompany him on holiday. Such costs should be considered if they are reasonable expenditure needed for independent living.’2

http://www.ageuk.org.uk/Documents/EN-GB/Factsheets/FS46_Paying_for_care_and_support_at_home_fcs.pdf?dtrk=true

Additional suggestions

communication aid configuration, mounting , unmounting and charging up

private therapies including massage for either pain relief or anxiety

Dressings for self injury and extra water (OCD)

ready meals when unable to cook

pets – insurance and food – for acompanionship and to feel safe.

 

 

 Posted by at 21:04
May 112015
 

Secret Changes to Motability Grant Making Conditions – People needed for Legal Challenge

Motability have introduced changes to their grant making conditions discriminating against disabled people with the highest support needs who are unable to work for a minimum of 12 hours a week, carry out at least 12 hours voluntary work (which apparently can’t be internet based but has to be outside the home and doesn’t include travelling time), are not in education for at least 12 hours a week and who need specialised adaptations to transfer to drive or drive-from-wheelchair vehicles.

These changes have not been made publicly known or advertised to current customers in any way about who is eligible for a grant and the changes were made without any consultation.

We understand these changes were made from June 1st this year but customers are only being told about them when they enquire about a grant for a replacement vehicle.

The impact of these changes which affects those with the highest and most costly needs are potentially life-changing. It could well prevent people having contact with family (let alone friends) if they live in a rural area with little or no transport, it means anyone who can only travel with equipment like hoists. Oxygen cylinders and other bulky items won’t be able to go anywhere. It also ignores the fact that with other cuts to services people will not be able to ensure they have the physical support from someone else to drive them.

We have sought legal advice to see whether these changes can be challenged as discriminatory and now need to hear from anyone who is or would be affected by these changes in the near future and who would qualify for legal aid. In particular we want to hear from anyone who currently does not have a vehicle and has been refused the right to apply for grant funding.

If you think you might be affected by these changes and are willing to consider taking legal action then please contact us at  mail@dpac.uk.net

http://www.disabilitynewsservice.com/motability-face-court-action-discriminatory-new-rules/

 

 Posted by at 20:33
May 062015
 

DPAC are very happy to post this update from Anthony’s friend and advocate, Joe Whittaker:


 

5 May 2015 — Dear Supporters,

I have just returned from a visit to see Anthony in Dublin.

Anthony is delighted that within the coming weeks he is going to be in his own home with his own support staff and enjoying his chosen lifestyle, once again.
A bungalow in his local and family neighbourhood has been found. The process of Anthony recruiting his own pa’s has started. ALL staff will be given full and ongoing training in Anthony’s communication – essential ingredient, for Anthony to direct his own life, with the support he requires.

Anthony is very much aware that there will be struggles to overcome to re establish his independent life but he has an absolute determination that he will achieve it given the recently established, and hard won, positive climate, which Anthony and his family know would not have happened without your warm and very practical support.

Anthony intends to post many photos when he is in his own home celebrating his and your victory.

Will keep you posted

Joe Whittaker
Friend of Anthony Kletzander


 

 Posted by at 10:10
Apr 092015
 

Please see below the news release from Joe Whittaker, Anthony’s friend and steadfast supporter and advocate, without whom, none of this would have happened.

 

Anthony Kletzander Wins his Right to Independent Living.

8th April 2015

We are delighted to inform all Anthony’s supporters that The Health Service Executive have agreed, on Friday 6th April 2015, to fully support Anthony’s return to sustainable independent living.

Discussions have already started with ‘Possibilities Plus’ in Dublin to manage Anthony’s support requirements, each of which will be directed by Anthony. Anthony will be selecting his own accommodation, with his own staff to start again his lifestyle in his local community, with a view to further university study and reconnecting his friends at Quiet Riot in, Manchester.

We want to thank all Anthony’s friends for their active support.The success of this campaign would not have happened without this support – thank you to everyone of you.

We want to thank, in particular, Disabled People Against Cuts (DPAC) for their commitment and guidance, who were not deterred by the threat of legal action against DPAC website for publishing details of abuse against Anthony.

Now the hard work starts to ensure we listen and listen and listen again to Anthony to ensure his Rights are fully realised.


 

This is fabulous news and all at DPAC are delighted, for Anthony, Anthony’s parents, Linda and Sigi, for Joe and Anthony’s friends.

We are also delighted because it shows that big organisations, such as Ireland’s HSE and Nua, are not invulnerable to pressure.

Protesting works, public shaming works, fighting back works.

We want to thank all the people who tweeted, facebooked, signed and shared petitions and posts, donated, wrote letters and emails,  and sent Anthony good wishes, you all played a vital role in this victory, it would not have happened without YOU!

And now our thoughts turn to all the other people who  have been wrongly incarcerated for the ‘Crime” of having Autism. We don’t know how many tens? hundreds? thousands? We don’t know the number but we do know its Wrong. And we will continue the struggle for Independent Living for them all.

You can learn more about what Anthony has had to go through by watching this video of Anthony’s mother, Linda speaking at a meeting organised by Finian Mcgrath TD (equivalent of MP). He organised the meeting about the treatment of disabled people in institutions which grew to about 60 people.

Yes we know that much of the video is on it’s side but its still worth seeing to learn about what people like Anthony have to go through.

 Posted by at 13:13