Points submitted to Government Ministers

This page includes the points submitted by the Muscular Dystrophy Campaign to Government Ministers who are reviewing the Disabled Facilities Grant

1. Means test for Children

As the Northern Ireland changes demonstrate, there are powerful arguments for removing the means test when parents are applying for grants to adapt their homes to accommodate their disabled children.

For example, the Muscular Dystrophy Campaign heard from a Grandmother of two boys with Duchenne muscular dystrophy this week who describes how the boys’ parents have been told they will not receive any grant assistance because their contribution towards adapting their home has been calculated as £40,000.

So far the family have raised £20,000 and are still only half way to getting any support to make essential changes to their home. In the meantime both boys and their parents are living in unsuitable conditions, with no indication of when they may be able to make the adaptations that they so badly need.

We urge the review to ensure that the means test for Disabled Facilities Grant applications for children be abolished in England, Scotland and Wales.

2. The Means Test in General

As with all means tests, people who have savings or earnings just above the means test limit face real problems in affording the essential changes they need to make to their homes. The means test assumes that when people are above the means test limit they will be able to borrow money to pay for adaptations, even though the cost of mortgage payments are excluded from the calculations.

However, with some people being allowed relatively small weekly incomes before the means test kicks in, this is obviously impossible. We have heard from people whose receipt of tax credits has lifted them into the means tested income bands. Should they manage to get a loan it would simply increase the indebtedness of people who are least likely to be able to cope with paying off the interest, let alone the balance of their borrowings. In addition the means test hits hardest at those who need the most expensive adaptations - the most severely disabled people.

We would urge the review to remove the means test completely, or to improve it to take into account mortgage payments, the difficulties of obtaining loans on low incomes and the low threshold at which the means test starts to take affect.

3. Mandatory Amount of Grants

Disabled people who need major adaptations also face severe problems because the mandatory amount provided by the Disabled Facilities Grants rarely covers the full cost of the adaptations required.

The mandatory grants are limited to a maximum of £25,000 in England and Scotland and £30,000 in Wales. For many people with muscular dystrophy, who may need to make substantial changes to their homes, this sum is often a small proportion of the actual costs of making essential changes. Adaptations such as building an extension to accommodate a downstairs bedroom and bathroom rarely cost less than £50,000.

4. Discretionary Grants

Many disabled people have to undertake full time campaigning to try to convince their local authorities to use their discretionary powers to increase the grant to meet the actual cost. Not all succeed. This leads to a situation where even those people who qualify for the grants under the means test are still unable to pay the full cost and are therefore doing without the essential changes to their homes that they need.

The Muscular Dystrophy Campaign has heard from a single mother whose local authority has refused to countenance a discretionary grant to top up the mandatory amount available to adapt her home to meet the needs of her son, who has muscular dystrophy. She is thus unable to make essential adaptations to her rural home and has been told her only alternative is to move 40 miles to the nearest city where suitable accessible accommodation may be available.

5. Conclusions

The means test for the Disabled Facilities Grant is unfair and creates real hardship. It should be abolished for children and there are powerful arguments for removing the it completely. If the means test is to remain it should take into account mortgage payments, the difficulties of obtaining loans on low incomes and the low threshold at which the means test starts to take affect.

The ceiling for mandatory grants is set at too low a level for those who require major adaptations. The grant should provide people with the funds they need to carry out essential changes to their homes. Presently this is not the case. Nor is the system of discretionary grants working to meet people’s needs. Judging by the protracted negotiations and campaigning that people have to undertake to convince their councils to make a discretionary payment, we are convinced that either the mandatory grant amount should be substantially increased to meet the real costs that severely disabled people face, or there should be clear criteria and guidelines for local authorities.