Practical Support  Discovering that your child had been diagnosed with Obliterative Bronchiolitis (OB) can be frightening and confusing. Below are a list of practical support mechanisms which may help you. Obviously it will depend on your individual circumstances as to which, if any, are applicable. If you have any more please let us know and we can add them to the list.
Equipment - Wheelchairs
You may find your child requires a wheelchair even if only for occasional use. Your local authority should have a wheelchair service that will loan you one. Try contacting your Local County Council they should be able to give you the correct contact details. Chairs are loaned free of charge for children under the age of 16 years. If you require a chair urgently the Red Cross will also, for a small donation, loan you one. They even allow you to take them abroad should you need one for a holiday. Contact your local Red Cross office or go to www.redcross.org.uk
Community Nurse
There should be a community nurse attached to your GP practice. You will probably have to ask to be referred to them but they are very useful for home support, organising repeat prescriptions, carrying out oxygen level monitoring and sleep studies should your consultant require them. They can also give emotional support and advise you of any local services which may be beneficial.
Financial SupportHaving a child with OB can put all kinds of financial strains on your family for example it may mean one parent has to give up work to care for the child or that travelling to specialised hospitals out of your area can be expensive. There is help available and you should contact the Department of Work and Pensions (DWP) to see if you are entitled to any benefits, these include, carers allowance, disability living allowance and attendance allowance. Log onto www.dwp.gov.uk and follow the link to disabled people and carers.
Hospital Transport Some hospitals provide transport but this is only available for children who have a medical reason for it. This may be assessed before hospital transport is provided. Please ask your Doctor if this may be available for you.
Fare Reimbursement
If you receive certain benefits, you may be able claim admission, discharge and outpatient fares for public transport for the patient and one adult. You will need to show proof of receiving benefits at the transport office/dept within three months of your child’s appointment or admission. Talk to the transport office/dept of your hospital for advice.
Free Road Tax If you qualify for, or have a child over 3 who qualifies for, Disability Living Allowance at the higher rate you are entilted to free road tax. There is no test of income or savings.
Motability If you are entitled to higher rate disability living allowance you can opt to use part of that allowance under the motability scheme. Motability is a national charity, set up on the initiative of the Government in 1977, to assist disabled people with their mobility needs. It directs and oversees the Motability Scheme which enables disabled people to obtain a car, powered wheelchair or scooter simply by using their government-funded mobility allowances. Go to the website to find out more www.motability.co.uk Motability promotes new year bargains.
Drive away a new car with no advance payment!
Motability, the car scheme for disabled people, has launched a promotional campaign to highlight the biggest savings available on new cars this year. Featuring models that are now available at no advance payment, the new prices apply to cars ordered by 31st March 2008. Anyone who claims the higher rate mobility component of Disability Living Allowance or the War Pensioners' mobility supplement, is eligible for the scheme and can exchange this allowance for a brand new car. Visit Web:
http://www.motability.co.uk/main.cfm .
Blue Badge Scheme The Blue Badge scheme provides a range of parking benefits for disabled people who travel either as drivers or as passengers. The scheme operates throughout the UK. The concessions apply to on-street parking and include free use of parking meters and pay-and-display bays. Badge holders may also be exempt from limits on parking times imposed on others and can park for up to three hours on single yellow lines as long as they are not causing an obstruction. Go to the website for details of how to apply. Please note that there have been recent changes to the scheme so it is best to check the website. www.direct.gov.uk/en/DisabledPeople/MotoringAndTransport Blue badge parking map. The Directgov Blue Badge parking map is being significantly improved from February 2008.The Blue Badge parking map provides information on blue badge parking bays. There will be a large increase in the number of locations featured as well as additional information on accessible toilets, train stations, Shopmobility sites and much more. For further information visit
http://www.direct.gov.uk/en/DisabledPeople/MotoringAndTransport/DG_10038295
Overhaul of the Blue Badge scheme.
An overhaul of the Blue Badge scheme has been announced by the Department for Transport. The Blue Badge scheme provides a range of parking concessions for people with severe mobility problems who have difficulty using public
transport. The scheme operates throughout the UK.
New proposals announced include extending Blue Badge entitlement to:
- children under the age of three with specific medical conditions
- people with the most severe mental impairments/extremely disruptive ehavioural problems
- specific individuals with temporary mobility problems lasting a minimum of one year
A new system of assessing eligibility for the Blue Badge is also being developed with the aim to standardise assessments throughout the country.There are also new proposals concerning extending the scheme to injured active and ex-service personnel, and additional efforts to fight fraud and abuse of the Blue Badge scheme.
Web: http://www.dft.gov.uk/transportforyou/access/bluebadge/
Discount Rail TicketsThe disabled person rail card allows you to buy discounted rail tickets. If another adult is travelling with you they can also travel at a discounted fare. The card currently costs £18.00 and is valid for 12months. £48.00 for three years. Children aged 5-16 may be eligible if they fulfill one of the criteria and an adult is travelling with them, the adult then qualifies for a discounted rate.The list of qualifying criteria can be found on the website or by contacting your local rail service. Always check when purchasing tickets however as sometimes this does not apply if travelling in peak times. www.disabledpersons-railcard.co.uk or www.nationalrail.co.uk
Oxygen for Flights Travelling by air may seem daunting if your child is oxygen dependant or just requires oxygen during a flight, however it need not be with careful planning. If you are unsure whether your child needs oxygen support check with your Doctor, they may have to have some pre-flight lung function tests to confirm if oxygen is necessary whilst in flight. Most of the larger airlines flying from major cities will provide oxygen for you but flights from smaller regional aiports often do not. You will need to arrange for oxygen directly with the airline rather than through a travel agent. Most airlines will ask you complete a fitness for flight form, which will need your Doctors signature. Be aware that all the airlines charge different rates for supplying oxygen, sadly some a lot more than others. If cost is prohibitive dont be afraid to shop around to get the best deal with different airlines. To give an example we have been charged as much as £200 for a short flight to Spain with one company and yet a round the world trip with another only cost £25.00 !!! If you explain that your child has special requirements when booking your flights and when you check in at the airport most airlines will provide a wheelchair service if needed to and from the plane and priority boarding.
Contact a Family Ring the helpline 0808 808 3555 for free copies of these new and
updated guides:
- Tax credits guide.
- Benefits, tax credits and other financial help.
- Help with council tax bills.
- Getting direct payments for your disabled child (England and Wales).
- Money when your child reaches 16.
New and updated guides from Contact a Family.
The following Contact a Family publications have been recently updated
and are available to download from our website or by calling the
helpline on 0808 808 3555
- Guide to claiming DLA for children
- Preparing for adult life and transition - England and Wales
- Preparing for adult life and transition - Scotland
- Special Educational Needs - England
Benefit Rules
Changes in benefit rules could mean some young disabled people are
worse off financially. From 27th October 2008 Incapacity Benefit and Income Support for people
with health problems or disabilities will be replaced by Employment
Support Allowance (ESA). Until then, families with a disabled teenager
born before 27th October 1992 may have a choice. They can either claim
the existing benefits now or wait and claim the new ESA at a later date.
As the rates and rules are different, depending on individual
circumstances, some young people could be worse off on the new ESA.
For advice about benefits for young disabled people telephone the
Contact a Family helpline - 0808 808 3555.
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