Financial Wellbeing Service Blog

This blog was written by our Financial Wellbeing officer Katrina Lovie! Katrina pours her heart into our job and supporting families up in the North of Scotland. Here she is talking about the impact of universal credit and a more hopeful future for our families!

Another day and another telephone call to the DWP PIP enquiry line. After a 20 minute wait listening to Vivaldi’s Four Seasons I get through to a real person at one of the DWP’s call centres only to be cut off within the first 10 seconds of answering. Oh no … time to try again. Still, it could be worse. A recent call to the Universal Credit helpline took over an hour.

Having to wait a long time to speak to DWP call centre staff to enquire about a social security claim is just one of the many financial challenges facing HD family members. But help is at hand. My two SHA financial wellbeing team colleagues and I spend a lot of time on the telephone, often when we are visiting families. Dealing with financial issues and making a call to the bureaucratic behemoth that is the DWP can feel overwhelming when daily life is consumed with the reality of living with HD or caring for someone with HD. Yet we all need a decent income if we are to participate in life. A simple task like making a telephone call on a family member’s behalf can resolve an issue and ease the burden a wee bit. I often make calls on loudspeaker so that the family member/s and I can make the call together and tackle the issue as a team.

Family members have been having a tough time in areas where universal credit is operating. Universal credit replaces 6 means tested benefits for working age people. It does not affect PIP, DLA, Attendance Allowance or Child Benefit. On top of the general ‘benefit freeze,’ in place since 2015, and the two child cap,  ‘rape clause’, and ‘bedroom tax’, HD families have suffered because of the 5+ week wait for the first universal credit payment but the most problematic issue for many of our HD family members is the cut to the severe disability premium, worth £64.30/week. This premium simply does not exist under universal credit. The result?  The people who suffer most from this policy are the most severely disabled in our society, some of whom live with HD.

Does it have to be this way?

A resounding, ‘no’.

Hope is on the horizon.

Some social security payments are to be devolved to the Scottish Government including PIP, DLA, Attendance Allowance and Carer’s Allowance. It is to be a rights based approach which sees social security as an investment in people and a human right in itself which is essential to the realisation of other human rights. Over 2000 people have been involved in the design of the Scottish social security system and in response to feedback the Scottish Government have confirmed that private contractors, such as ATOS and Capita, will not be involved in disability assessments for PIP.

Some HD families have already received the Scottish social security top up to Carer’s Allowance which brings Carer’s Allowance in line with Job Seekers Allowance and recognises the crucial role that unpaid carers play in family and community life.

Personally, I’d love to see us go a step further and put in place a basic citizen’s income – an unconditional payment provided to every citizen without means test or work requirement.  The amount is enough to cover the basic cost of living but people would still be incentivised to work to supplement the basic citizen’s income payment. It would replace a lot of the current benefits and personal tax allowances system which are expensive to administer, overcomplicated and unfair. Basic income would provide basic security, allowing people to feel more in control of their lives. Pilot projects have shown that basic income can reduce poverty and inequality, improve health, reduce school dropout rates and, importantly for our HD families, it guarantees income for non-working caregivers, thereby empowering important unpaid roles. To find out more, have a listen to basic income advocate, Professor Guy Standing, speak about basic income in relation to Scotland: https://youtu.be/mLn7Ocs1otU

Whichever form the social security system of the future takes, I do hope it has compassion and kindness as a central priority. The Joseph Rowntree Foundation recently published a report, ‘Kindness, emotions and human relationships: The blind spot in public policy,’ https://www.carnegieuktrust.org.uk/publications/kindness-emotions-and-human-relationships-the-blind-spot-in-public-policy/ It points the way for public policy to better respond to our need for more kindness, emotions and human relationships.

6 great ideas for workplace fundraising!

To mark the occasion of Scottish Huntington’s Association turning 30 in 2019 we’re aiming to get 30 companies to sign up and support us! We’re doing this because we need to protect the services that are making such a difference to the HD community and build a better HD Scotland for a future where everyone has equal access to a high quality level of support. No one should be alone in facing the complex challenges of HD.

Here are some great ideas of ways your workplace or business could support SHA in 2019!

Nominate us for charity of the year!

Elaine Mackenzie from Graham Environmental Service did this for the year 2017 and what followed was incredible. We were chosen as one of three charities and received a donation of £8000 from a whole series of activities throughout the year including golf days, pop up charity shops, balls, quizzes and more! Does your work have a charity of the year (or month?) scheme? #support

 Organise a cyclethon in the office!

The charity committee at Tepnel pharma services organised a cyclethon in 2016 with phenomenal results! Not only did their whole staff team get engaged by taking part, sponsoring or cheerleading but they raised over £2000! They had great support from a local gym who provided the bikes and then the fab cyclers dedicated time at the end of each day over a week to reach their set distance between them! . You could organise something similar and involve all your colleagues.  This would be great team building with loads of fun, never mind improving your health and wellbeing.  #cyclethedistanceonthespot #dedication

Round up a team to take part in a sponsored event!

The fantastic four from Blackadders LLP Dundee office teamed up to take on the Edinburgh Marathon last year. Doing it together meant they could keep each other motivated for both training and fundraising – a bit of healthy competition goes a long way! It was also a great way to support their colleague by showing they really cared! #teamwork

Ask your employer about match funding!

Virgin London Marathon participants asked their employers to match fund their fundraising and increased their amazing efforts by over £3,000. It is always worth asking your employer if they support their employees fundraising efforts.  We are happy to post about, employer and employees support, gaining recognition for all involved.  #amazingemployers

Host a SHAre tea for HD Party!

Who can resist a cuppa and a cake?!  Planning a tea party can be done anywhere, home, school, university, work or on the street.  One of our nursing homes who support our work, held a tea party in their café and brought carers and their loved ones together with kids and grandkids taking part too…Great fun for all generations and bring people together in an informal and relaxed way. Start the chat today and organise a SHAre tea for HD tea party and find out more about people you care about, all the while supporting an incredible cause. #startthechat

Organise a raffle and/or tombola!

A large financial business used a Friday morning to organise tombola and staff from all departments queued up to take their chance on winning some of the amazing prizes on offer. This took up less than an hour of staff time, raising £350 of which the employer matched funded £350 making an incredible total of £700. Not too much time was taken up but an incredible outcome for cause and helping to improve staff motivation and moral by doing something for others.  #feelproud

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