Advocacy & support
Here are some areas of the support you may need and how Kay Atkins, our Family Support Worker, can help:
Liaison with medical professionals
When you or your child is diagnosed with A-T you will be seen by various local doctors and therapists. Kay can provide them with the information they need about A-T. Because A-T is a rare condition many doctors and therapists have little knowledge of the condition. Kay can also put them in touch with our Specialist Doctors and Therapists for specific advice. Medical Advice
When a child who has A-T starts school they will need extra help with their work in the classroom and with getting around the School. We would recommend that all children with A-T have a 'Statement of Special Educational Needs' Kay can liaise with the School, provide them with information about A-T and advise on the support your child will need. Please also see our 'Information for Schools' leaflet in Publications
Your local authority have a duty of care to provide certain equipment, e.g. a wheelchair. However depending on where you live, it may be difficult for you to obtain this. Kay can liaise with your local authority and with help from our specialist Occupational Therapists, make sure you can obtain the equipment you need. We often work in collaboration with local authorities, for example by providing extra funding towards a wheelchair. Please see Grants
We would recommend that you contact Social Services in your local area. Kay can make a referral on your behalf if you wish. A Social Worker can make an assessment of need to see if there is any help and support your local authority can offer. This may be assisting with claiming the benefits you are entitled to, accessing local social and leisure facilities, respite care breaks, help in the home and referral to other agencies.
As you or your child's needs change, you may have to alter your home environment. Most children or adults with A-T will eventually need a ground floor bedroom and bathroom, as stairs become impractical. Some families have a small platform lift installed in their home to access other floors and others may chose a stair lift. However generally a ground floor bedroom with a wet room (with easy access to toilet and shower) is the best option. A Disabled Facilities Grant is available to all families with a disabled person living in the home to help with the cost of adaptations. Kay can assist with the application process and can act as an advocate to ensure you get the help you need. Sometimes moving somewhere with ground floor accommodation or a bungalow is the best option.
Respite breaks give an opportunity for the person with A-T to have some time away from home and meet with others of a similar age, while at the same time giving a break to parents or carers who are looking after them. Your local authority and social worker should be able to advise you of what is available in your area and whether they can offer any funding. Many families also make use of their local Hospice for a break away from home and support for the whole family. Kay will be able to help you to find out what services are available in your area as well as putting in an application for a Grant if required.
Holidays & leisure
There are various organisations around the country which provide holidays or wishes for people with disabilities. There are also local organisations running leisure clubs for disabled people. Your social worker should be able to provide you with details of local opportunities and Kay can help with advice about national organisations. Links
If you or someone you care for receive the higher rate of 'Disabled Living Allowance' - Mobility Component, then you can apply for a car through the Motability scheme. You may also be entitled to a blue badge and other concessions. Kay will be able to advise you. Links
When you or your child finishes school they may wish to consider further education. There are a number of specialist colleges around the country for people with physical disabilities. Kay can help with advice on appropriate colleges and the options available. Links
A few people with A-T are employed either in full time or part time work and others take on voluntary work. Your social worker or your local disability jobs advisor should be able to advise on this.
Kay can, where needed, attend meetings on your behalf or support you, for example when dealing with schools, social services and councils.
For help with all the above and for any other support requirements please contact Kay on 01582 760733 or email Kay,