Those deemed to have a care need will receive grants and benefits which collectively are referred to as a care package. The individual grants and benefits are awarded according to an assessment of eligibility and needs undertaken by Social Services.
Applying for social care
If you think you have a care need, you are entitled to an assessment from Social Services. Once you request an assessment, your local authority is obliged to carry one out.
Social Services should confirm the date and time of your assessment so that you can have someone with you if you wish. This also helps to make sure that you don't miss any details. An informal chat with a social worker does not constitute a proper assessment as you need to be given the opportunity to describe your needs in full detail.
To make the most of your assessment, it is important to be prepared. Before the scheduled meeting, think about how your condition affects your day-to-day life, for example, think about what you would be able to achieve if you had adequate help and support? It might be useful to keep a diary over a week and note down difficulties you might have with day-to-day activities, or make a note of times when your condition prevents you from doing something.
A social worker will come to your house and look at the range of your needs, what you are able and not able to do and how your independence is affected by your disability. The assessment takes into account your immediate day-to-day needs as well as your longer-term needs.
It is important to remember that social workers often have limited knowledge of muscular dystrophy and related neuromuscular conditions, so make sure that you explain how your condition affects your everyday life and independence.
How the assessment works
When assessing your needs, councils follow guidance known as 'Fair Access to Care Services' (FACS). Under the FACS framework, there are four brackets: critical, substantial, moderate and low. These relate to the seriousness of risk to a person's independence if their needs are not met.
Any needs that are identified in the assessment, and which meet the council's eligibility criteria, are known as 'eligible needs'.
The council must publish details of its eligibility criteria, and which of the bands it is prepared to fund. It is common now for councils to fund only those needs which fall into the 'critical' or 'substantial' bands, and councils will meet your eligible needs only if they fall within one of the bands they are able to fund.
The information you have given during your assessment will be used by social services to put together a 'statement of needs' and a plan of action to meet those needs. This is called a 'care plan'.
From time to time, your needs may be re-assessed. However, your local authority should not reduce or withdraw a service from you without first re-assessing your needs. You can also ask for a re-assessment if you think your needs have changed.
Applying for ongoing health care
Continuing healthcare is care provided by health and social care professionals over an extended period of time, to meet your physical or mental health needs which are caused by your disability or illness. The funding of continuing care can be complicated: it can be funded entirely by the NHS or it can be joint-funded by the NHS and Social Services.
At the moment, if you are eligible for NHS continuing healthcare, your continuing care will be paid for by the NHS Primary Care Trust (PCT). This is provided outside hospital and is for people with ongoing healthcare needs and is reserved for people with particularly complex health and social care needs. NHS continuing healthcare is free and can be provided in your home, or in a care home.
How the assessment works
To qualify for continuing healthcare, your care needs are likely to be complex, substantial and ongoing and caused by a disability or chronic illness, or following hospital treatment. Your primary need for care must relate to your health.
Those who receive continuing healthcare usually require healthcare services provided by the NHS as well as social and community care services from the local authority.
The main benefit of a package funded solely by Social Services is that you have the option of direct payments, which give you more control, flexibility and choice to create a care package that fits in with your specific needs and takes into account family commitments and lifestyle.