Using the Mathieson case to get a child’s DLA payments reinstated in hospital

What are the Disability Living Allowance (DLA) hospital rules?

Once a disabled child has spent 84 days in hospital as an in-patient, payment of their DLA is suspended until they return home. This applies regardless of whether the child spends 84 consecutive days in hospital or whether different stays in hospital are ‘linked’ together. Under linking rules the time spent in two separate hospital stays are added together unless they are separated by at least 29 days at home.

What is the Mathieson case?

The government has tried to justify these rules by arguing that a child in hospital already has their care needs fully met, free of charge by the NHS. This was challenged by the Mathieson family from Warrington. Their son Cameron was a severely disabled boy (aged 3 at the time his DLA was suspended) with extremely complex needs resulting from cystic fibrosis and Duchenne muscular dystrophy. Whilst in hospital his parents continued to provide very high levels of care to him. They also incurred substantial extra costs while he was in hospital.

The Mathieson family challenged the DLA hospital rules via a lengthy legal appeal. Sadly Cameron passed away during this process but his parents continued with their legal challenge. The case was eventually heard by the Supreme Court and in a unanimous decision issued on 8th July the Court found that the suspension of Cameron’s DLA payments had breached his human rights.

Does the judgement mean that it is unlawful to suspend a child’s DLA in all cases?

While the Court found that Cameron’s human rights were breached, it stopped short of saying that the rules would be unlawful in every case. Instead the Court said that whether the rules breached a child’s human rights would depend on the individual circumstances. For example, the DWP may argue that the rules are not unlawful where a family are providing a lot less care to their child while they are in hospital.

However the Court did acknowledge that its judgement “will no doubt enable many other disabled children to establish an equal entitlement [to Cameron]’. This means that families who continue to provide a high amount of care to their child whilst they are in hospital should be able to show that the suspension of DLA breaches their child’s human rights and get these payments reinstated. Research carried out by Contact a Family and the Children’s Trust suggests that almost all families provide similar or higher levels of care while their child is in hospital long-term. Consequently many families with a child in hospital should be able to benefit from the Mathieson judgement.

As part of the ‘Stop the DLA Takeaway’ campaign Contact a Family and The Children’s Trust are lobbying government to scrap these rules for all children in hospital. However at the time of writing, the Department of Work and Pensions (DWP) has not responded to the Mathieson judgement. They may decide to amend, or even scrap these rules but their intentions are not clear at the moment. In the meantime if you are affected by these rules you should contact the DWP and ask them to review their decision to suspend your child’s DLA.

How can I challenge the suspension of my child’s DLA payments?

You should write to the Department of Work and Pensions asking them to reinstate your payments. Contact a Family have produced a template review letter to help you do this. The template letter is addressed to the DLA Unit’s standard address. However if the decision you received telling you DLA was being suspended came from a different office then amend the address accordingly.

This template letter is aimed at families with a child aged under 16 whose existing DLA payments have been suspended because they have spent 84 days or more in hospital. See page 3 of this guide if your child first claimed DLA whilst they were in hospital or if your child is aged 16 or above.

What other information should I provide in the review letter

Contact a Family’s template review letter includes some space for you to provide details of your child’s condition. It also has sections for you to provide details about the care and supervision that you continue to provide in hospital and the extra costs that you incur.

In asking the Department of Work and Pensions (DWP) to reinstate DLA payments you will need to show them that your family continues to provide a high amount of care to your child whilst they are in hospital. Research carried out by Contact a Family and the Children’s Trust suggests that almost all parents (99%) provide either more care or the same level of care when their child is in hospital compared to when they are at home. However you can’t assume that the DWP will automatically accept this applies to you. Instead it’s best to outline details of the care and support that you provide to your child while they are in hospital.

If you provide the same amount of care, or more care, while in hospital compared to when at home then you should specifically say this when completing this section of the letter. If you, or your partner, spend all of the day at hospital with your child then you should also make this clear. You should also provide details about the type of care you provide to your child in hospital. In thinking about this, the following checklist may be helpful:

·  Feeding – including peg feeding or tube feeding

·  Drinking

·  Dressing

·  Changing pads and clothing

·  Washing

·  Taking your child back and forth to the toilet

·  Dealing with stoma bags

·  Administering medication

·  Turning your child and helping them remain comfortable in bed

·  Assisting health professionals to communicate with your child

·  Providing stimulation and play

·  Providing education

·  Providing physiotherapy exercises

·  Providing emotional support

·  Monitoring oxygen levels

·  Changing nasogastric tubes

·  Being available to participate in discussions about your child’s care and treatment

·  Sleeping by your child’s bedside

This list is not exhaustive – there may be other types of support that you provide to your child.

If you can also get a letter from staff at hospital confirming that you provide a high level of care while your child is in hospital, this would be very helpful. However if this is not possible don’t let it prevent you from asking the DWP to review their decision.

As well as outlining the care that you continue to provide, your review letter should also make clear if your family continues to have increased costs while your child is in hospital. You may find the following checklist to be helpful in thinking about what additional costs you incur. However if there are other costs not listed below make sure you also mention these in your review letter.

Additional costs commonly incurred by families

·  travel for parents and siblings to and from hospital

·  parking costs

·  meals at hospital

·  laundry costs

·  extra clothing such as bedclothes

·  higher mobile phone bills

·  costs of internet access, toys, books and magazines to keep your child occupied

·  accommodation costs if siblings have to stay overnight whilst on a visit to hospital

·  reduced earnings through taking time off work

·  childcare for siblings because parent(s) are needed at hospital

My child has been in hospital for less than 84 days, what will happen to their DLA if they are still in hospital at that point?

Once your child has spent 84 days in hospital, the Department of Work and Pensions will need to decide whether to suspend their DLA payments or whether to let them continue in light of the Mathieson decision. Contact the DLA Unit to ask them what they intend to do. If they suspend payments you can use Contact a Family’s template review letter to challenge that decision.

What about children who first claim DLA while in hospital?

If your child has not had DLA before and first claimed while in hospital then you may be affected by a different rule which says that your DLA payments cannot start until your child is discharged home. Contact a Family’s template letter does not cover families in this situation. However you may still be able to use the Mathieson judgment to argue that your child’s human rights have been breached and Contact a Family can provide you with an amended review letter to help you argue this. Phone Contact a Family’s free Helpline for further help on 0808 808 3555.

What about children in hospital who are aged 16 or 17?

Young people aged 16 and 17 are treated as adults under the DLA rules and have their DLA payments suspended after only 28 days in hospital. However despite falling under the adult DLA rules, 16/17 year old’s are still defined as children under national and international law. If a 16/17 year old continues to receive a high level of care from their family in hospital they may still be able to use the Mathieson judgement to challenge the suspension of their DLA payments. Phone Contact a Family’s free Helpline on 0808 808 3555 for further advice.

What about young adults aged 18 or over in hospital?

Young adults aged 18 or above and who continue to receive high levels of care from family while in hospital should seek advice from a benefits advice service about the possibility of using the Mathieson judgement to challenge the suspension of their DLA payments.

Contact a Family

July 2015