Author: Les Scaife
West Lancs Peer Support (WLPS) was formed in 2000 when 4 families came together to support each other to manage their Direct Payments. At that time there was no established support at all for payroll, contracts of employment Tax & NI, methods of financial record keeping and the general admin that goes with the scheme. So the four of us sat down and designed our own system of record keeping and payroll system.
Using our experience of the problems we encountered to access Direct Payments (direct payments were still only available as a concession then), we began to help other families to access and manage their funds. In 2003 we became an established organisation and started work on an online PA register to cover Lancashire, we found this to be an important part of the system for when a regular PA was sick, on holiday or had left the employ of the end user. This “bank” of staff was there as emergency cover to ensure the service to the end user was not disrupted.
As parents we have always been amazed that “the powers that be” should regard people with a disability as needing something different in life than people without a disability. People with a disability want the same things in life in every aspect as anybody else, the bit that is missing is the support to access what we all take for granted. It is for this reason that we have concentrated on support mechanisms as the most important part of self-directed support.
We felt from the start that users and carers should take ownership of support mechanisms, as it is only they that know what support is needed for the person they care for. Over the years we have developed a support system that involves families working together in groups to support each other, with the Peer Support Group as the hub when families need information and advice or help on a certain issue. The advantage of this system is that families can cover each other for short periods of respite like an evening out or any other social occasion, families can share PAs or even pool their budgets, all this helps to stretch the budget and leaves more funds available for other activities for the user.
The other advantage of working like this is that apart from the practical support families can give each other, we can also give emotional support that is so important at times and is never taken into consideration at the assessment. This kind of support cannot be given by anyone other than another carer who understands how that person is feeling. Working as a group, it is nice for the carer to know they can go to another carer to “unload” their problems onto someone who understands.
There are also the various forms of support that we should be looking at after the assessment, we feel the assessment process is now outdated and needs to be brought into the 21st century. There needs to be a much clearer system of entitlements - not mysterious “panels” that do not include the user. The Social Worker should carry out assessments that are fair and honest - not as efforts to unfairly limit resources in the light of financial constraints.
Once needs have been identified the social worker should sit down with the family, or circle of support, or trust, to see how those needs can be addressed. What support is there in the community that can meet any of the needs? What support can the family give? What support will the local authority give? We seem to have got out of the habit of working as a community and must learn to re-build communities and work together in the interest of the people we care for. Working in groups could help bring that about.
Something the business community have been slow to realise is the amount of purchasing power that people with disabilities have. We are currently in negotiation with a fitness centre to use the gym facilities during their downtime between 10am to 3pm. We can help them fill that downtime by allowing people with disabilities to use the facilities at a 50% reduction in cost.
Using these facilities has helped my son integrate into the community by getting to know the people that use the gym during the day. He is now welcomed by the other users of the gym with “Hello, Brian - how are you?”. This may sound normal to some, but to Brian it means so much that he has been recognised and treated like other people in the gym, hopefully he may be enjoying that at a reduced cost soon.
None of us live in a community that we do not contribute to in some way, we all do favours for our neighbours at times, simple things like taking in a parcel if our neighbour is at work, keeping an eye on someone’s house if they are on holiday. We need to build on these simple things to give more opportunities for the people we care for to become more involved in the community they live in.
Here are just two examples of the kind of work we do:
Currently we are supporting two young people with complex needs to each live in their own adapted bungalow. Working in partnership with social services and the Independent Living Fund we ensure that there is support available around the clock. We manage the staff, the Individual Service Funds and pay salaries and the bills.
We are also working with social services and with the DWP to manage an elderly lady's benefits. Mrs X has dementia and was not paying her utility bills. When she had a benefits check it was found she was also not getting the benefits that she was entitled to. So WLPS arranged with her social worker and the DWP at local level for the lady’s benefits to be paid into an Individual Service fund managed by WLPS. WLPS pay:
- a personal assistant to help with the shopping and ensure Mrs X eats properly
- the utility bills by direct debit
- and provide a nominal amount to Mrs X for social spending
WPLS retain the balance on her behalf to pay for larger items like clothing and household items as needed. WLPS have had a telephone installed so that Mrs X’s family can keep in touch. Accounts are audited by the social worker on a three-monthly basis. She is now much better off financially.
This service is audited by social services and has been featured in the March 2012 edition of the DWP newsletter. Peer Support is probably the best type of support there is available for any group of people whatever their needs, West Lancs Peer Support will assist any group that want to set up as a Peer Support group.
We are happy to share with others copies of our systems and forms to save new groups reinventing the wheel, please give us a call on tel: 01695 556554.
The publisher is The Centre for Welfare Reform.
West Lancashire Peer Support © Les Scaife 2012.
All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.
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