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Huntington's Disease Association, Hampshire Branch |
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Benefits etc |
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Even though anyone suffering from HD, or caring for someone who has the gene, is in for a long haul, somehow each stage can take you by surprise, leaving you struggling. Specific HD problems can usually be addressed through Eve Payler, our Regional Care Adviser. Other problems, perhaps surprisingly, can be alleviated by Officialdom. Here are some memory joggers. By the way, all thanks to Ros Loft and the West Surrey branch of the HDA, from whose website much of this stuff was shamelessly nicked. Please note: Information on services given is not an endorsement by the Huntington's Disease Association. Also, information may not be up to date as the situation is constantly changing. If you are aware of any factual errors or have any suggestions for additional information to be included, please contact us.
Benefits: Disability Living Allowance (or Attendance Allowance if over State Pension Age) are benefits payable in respect of disabled people, not their carers, and are not taxable. The amount depends on the level of disability. Apply to the Disability and Carers Service, part of the Department of Work and Pensions. Or click here for the Disability Living Allowance website, or here for the Attendance Allowance website. Note that to qualify for a Blue Badge for parking you’ll need to be getting the middle level of DLA for mobility. Carers Allowance is a taxable benefit payable to a carer caring at least 35 hours a week. Some other earnings are possible (but not a lot). Apply to the Disability and Carers Service as above, or check out the relevant website here. Incapacity Benefit is a taxable benefit payable if you have a qualifying NI contribution record and do not have a pension of more than £85 a week. Ask/apply through your local Benefits Agency, or check the relevant website here. Boiler Repairs Warm Front is a government-funded scheme which provides grants to make your home warmer, healthier and more energy-efficient. So if your boiler breaks down, you may be able to get a full grant to repair or replace it. Anyone in receipt of a disability-related benefit is eligible. Visit this website for more info. Car Tax Exemption It is possible to get exemption from paying car tax if the car is used primarily for the disabled person. This does not mean it can’t ever be used for anything else, but its primary use must be for the disabled person. Visit this website for more info. Care Homes We have some knowledge of care homes in Hampshire, so do ask if you are getting to this point. The choice of home is a difficult and important decision. Our Regional Care Adviser will also be able to assist. A list of homes is available here. Also, Help The Aged have a good little book, ‘Care Homes—Information and Advice. You can get a free copy by ringing 020 7278 1114, or by checking out their website here. Carers’ Support Caring can be exceedingly hard, and you shouldn’t wait till you’re about ready to jump off a cliff before seeking support. We’re lucky in Hampshire to have Carers Together, a proactive, informed, thoroughly worthwhile bunch of people who may not be able to make your problems go away, but will almost certainly reduce them to bearable proportions. Check out their website here. If you’re in Dorset you should contact Julie McDermott of St. John Ambulance. She runs a carers’ support project which is first class. And then there are two national organisations for carers, both of which have Message Boards. Check out Carers UK, and the Princess Royal Trust for Carers. Cinema tickets There is a national card scheme which can be used to entitle a carer to a free ticket when accompanying the person they care for to the cinema. The card is accepted in almost every UK cinema and is valid for one year. It costs £5.50. To apply, ring 0845 123 1292, or write to CEACARD, PO Box 199, Deeside, CH5 9BW. Or, check here.
Council Tax reduction There is more than one way of getting a Council Tax reduction from your local authority. If a person uses a wheelchair indoors or needs an extra bathroom or kitchen, or if a room is mainly used by a disabled person, a reduction to a lower band can be obtained. There is also a 25% reduction for people with a mentally-related illness, AND HD QUALIFIES (you will need a doctor’s certificate). Ask your local council for this reduction. They may claim no knowledge of this rule, so you may have to bang the counter a bit. Grants from the HDA The branch committee is allowed to make welfare grants to branch members. These could be for respite care, items of equipment, or anything else that you need as a result of HD. In case you wondered why we fundraise, well, this is the reason. If we’re a bit short and can’t help, maybe the main HDA will be able to, as they run a similar scheme. You can also apply to the Barchester Healthcare Foundation, a body that makes grants available to individuals and organisations who have identified health and social care needs which can’t be met by the statutory public sector or by the individuals themselves. Holidays A caravan in Bashley Park, near New Milton, is available to our members for holidays. It is owned and run by the Gosport and District Sports Association for the Disabled, and those in our branch who have stayed in it say it’s perfect for the job. More information through Hugh. London Congestion Charge With a disabled badge you can register up to two cars so that the London Congestion Charge is not payable. On line, you can even change the car to which it applies, either temporarily or permanently. Click here. London Parking The Blue Badge scheme doesn’t work in Westminster, Kensington and Chelsea, or in some parts of Camden. However, all of these boroughs have allocated disabled slots (but don’t use numbered ones) across their territory. For most of them you can stay up to four hours free. A few of them allow parking all day. You can get lists of where the slots are, and maps, by writing to the individual borough you want to park in. In addition, you can stay at an ordinary parking meter, having made a payment, an extra hour without getting a ticket (though the penalty will show on the meter), so make sure you are displaying your blue badge, and clock with the time of parking. Power of Attorney There almost always comes a time when HD people can’t look after financial matters, so it is important that they grant a Power of Attorney to someone they trust while they are still able to do so. Although it can be done through a solicitor, this isn’t necessary. All the forms and guidance can be obtained through Hugh. While thinking about this, it’s a good time to consider what sort of medical care may be required or, more to the point, not required in the future. There are two different types of Lasting Power of Attorney: one for property and affairs, the other for personal welfare. If someone registers a Lasting Power of Attorney for personal welfare, they entrust someone else with the responsibility of taking decisions about, for example, resuscitation and life support. Alternatively they can make a Living Will, or Advance Decision as it’s now called. The difference between an Advance Decision and a Lasting Power of Attorney for personal welfare is that the Advance Decision states what the individual wants to happen, while the LPA passes the responsibility for such decisions to someone else. Prescription Charges HD is not one of the conditions listed for exemption from prescription charges. However, you can apply for exemption for people with a continuing physical disability (meaning that they can’t go out without help from another person). Get form FP92A from your doctor and apply for an exemption certificate. Social Services It is very important to be registered with Social Services as this provides a pathway for a number of benefits and various forms of assistance like Home Care, Day Centres, respite breaks. Blue Badge, etc. Contact your local Social Services office and ask for an assessment for the HD person and another one for yourself as their carer. It is also through your Care Manager (the current name for Social Worker) that you can get a referral to an occupational therapist who can arrange for adaptations to your home and the supply of disability equipment. Specialist Services Referrals can be made through your doctor for speech therapy, physiotherapy and the services of a dietician. There may also be other facilities available like swimming for the disabled. Toilet Facilities You can get a key that will open any disabled WC in the UK. There is a small charge for the key, but you get to use nice clean BIG loos. Either apply to your local council, or online through Radar, the people who operate this scheme. Useful Websites Other useful websites are: http://www.hdlighthouse.org
Please note: Information on services given is not an endorsement by the Huntington's Disease Association. Also, information may not be up to date as the situation is constantly changing. If you are aware of any factual errors or have any suggestions for additional information to be included, please contact us. |
