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How I would like to spend my time?
Think carefully about how you would like to spend your week. Think about everything you might like to do – around the house and garden, leisure, recreation/sports, work, further education (a wide variety of possibilities here) and other creative activities.
Use a diary such as that provided here to help you to work out how you would like to spend your time each day of the week, morning afternoon and evening.
Work our how much and what kind of help and support you would need to enable you to do these things.
Consider whether you might like to receive a Direct Payment to enable you to employ a personal assistant to help you to do the various things that you have noted in the diary. This may seem daunting, but you can get help with recruiting someone, with making payments and with other employment issues: National Centre for Independent Living, or Glasgow Council for Voluntary Service.
Whether or not you feel that you might like to employ a personal assistant you should write to request a community care assessment from your local social work department: see specimen letter. A community care assessment is necessary before any services or direct payment can be provided.
If you have not had a reply to your letter after two weeks, write again – this time asking when the assessment is likely to take place. Do not give up!
Community Care Assessment
You may well be eligible to receive all or some of the help you need free of charge or for a small payment. In order to find out you need to request a Community Care Assessment form from your local authority Social Work Department. This should be requested in writing: see specimen letter.
The purpose of the Community Care Assessment is to find out about your day to day difficulties and needs – so that you and the person doing the assessment can work out how much and what kind of help you can be given. You should also get a written statement of any changes, and information about any benefits you may be entitled to and how you can claim.
It is important to plan for your Community Care Assessment – by thinking about your needs for personal care, help with household tasks, accommodation and social/leisure/recreational activities. You may find it helpful to discuss this with family members and health service and other professionals who are involved with your care. It is often a good idea to have one of these with you to help speak up for you during the Assessment. To help you work out in as much detail as possible your needs, you may find this 'checklist of activities and opportunities' helpful.
In most cases you should be able to choose between having care provided by the local authority social work department or being provided with a direct payment to enable you to purchase services yourself (for example a personal assistant, attending leisure and recreational facilities, short and longer breaks, personal development programmes. For further details see direct payments.
Direct payments
People with disabilities who require help to live a normal life now have the right to receive direct payments for this purpose. One aim of Direct Payments is to give disabled people more control over the services they receive. A second aim is to provide greater choice over what is available, and it is hoped that new services and opportunities will develop in order to make this choice as wide as possible.
Before any Direct Payments can be made it is necessary to have a Community Care Assessment. However the traditional assessment process may not be entirely suitable for people thinking of Direct Payments, for two reasons. Firstly these assessments often focus on the assessment of disability and on the need for help or care. It is important however to include all the positive things which help to make your life more fulfilling. Secondly the person being “assessed” may not be able, particularly in a one-off meeting, to articulate all his or her needs, hopes and aspirations. A good way of overcoming these difficulties is to have a skilled person (an advocate) present with the disabled person at the assessment. Better still is for the advocate to have a full discussion with the disabled person (and possibly also professionals and lay carers who knew the person well) at an earlier stage in order to prepare for the assessments. The 'checklist of activities and opportunities' may help you with this.
Ways in which Direct Payments can be used:
• Employing a personal assistant to help you at home, to go out with you to shop or for recreational purposes, or help you to attend college or university - including taking notes of lectures etc.
• Paying for you to attend a wide range of leisure and recreational activities, possibly as an alternative to attending a day centre or adult training centre.
• Arranging a short break or respite, possibly in accommodation specially designed for disabled people and their families/carers.
• Participating in personal development and other programmes (eg confidence building), fatigue management, stress or anger/fear/frustration management, communication skills, relaxation/cognitive symptom management.
Direct Payments do not affect entitlement to benefits. However it is necessary to ensure that money received will be properly managed - if necessary with assistance from an agency which specialises in providing help with employing and paying staff, contracts etc. A financial assessment also will be undertaken and you may be required to contribute to the cost of your complete package of support.
A very helpful and detailed guide to Direct payments is available at http://www.hants.gov.uk/socservs/directpayments/. Also try the Direct Payments website or telephone
0131 558 3450.
In conclusion, consider Direct Payments if you are keen to have more control over the help and support you receive and/or wish to take part in a wider range of activities and recreational/leisure pursuits and if you are able (if necessary with assistance from organisations such as the National Centre for Independent Living or Glasgow Council for Voluntary Service to manage the process of receiving and making payments.
Further details of the Direct Payments scheme can be obtained from the Direct Payments website: telephone 0131 558 3450, by telephoning the Direct Payments section of your local Social Work Department or by contacting the ‘Signposting service’ – telephone 0141 945 5036. There is also an attractive and easy to read publication – directed mainly to younger people – on the Norah Fry website
Carers
Carers are people who look after a family member or friend without pay. They are however – like disabled people themselves – eligible for a Community Care Assessment, provided that the care they provide is substantial and regular. The assessment process and the preparation that should be make for it is the same as the assessment for disabled people.
Carers are also eligible for a number of allowances,listed here by the Department of Work and Pensions and for short breaks and longer periods of respite.
Short Breaks
"Respite Care" has primarily been viewed as a service for carers offering a breathing space from caring and the time to spend with other members of the family and friends. A time to recharge the batteries. However, respite is also important for disabled people themselves - offering time away from home, the opportunity to meet up with friends and the chance to make new relationships.
It is currently common practice for disabled individuals and their families to plan "respite" on a residential basis at set times throughout the year, usually in holiday homes, hostels or other facilities. This arrangement can work well for some individuals but it does not take account of unexpected personal circumstances or the need that disabled people have to participate in ordinary social and leisure activities in their own communities and elsewhere.
Short breaks should be a positive experience which improves the quality of life of the individual and supports his/her relationships, be available from a few hours to a few weeks, and in the person's home if so desired. There is therefore a need to develop other models of respite provision, for example
• specialist guest houses, community flats, purpose built or adapted houses
• Breaks in the person's own home through a care attendant or sitting service.
• Holiday accommodation.
• Supported breaks for the disabled person and the carer, family or friends together.
• Befriending schemes where volunteers provide short breaks.
• Breaks in supported accommodation.
• Flexible breaks through Direct Payments arrangements.
Breaks may be provided by services or through individual arrangements paid for by Direct Payments. Already individuals in receipt of the Independent Living Fund and employing personal assistants are using the money very effectively to purchase holidays abroad or weekend breaks in hotels and guest houses. Direct Payments will result in a growth in this trend.
For further information see the following sites:
Respite for the disabled person
Facilities for carers
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