Future For parents and families

What should we consider when planning for our family’s future?

How can we afford all the things our child will need?

Having a child with a disability can put pressure on a family’s finances. It can be helpful to understand clearly what the statutory authorities should provide.

Some essential equipment for using around the house, such as banister rails and bath aids, is provided free of charge by Social Services. Manual and powered wheelchairs are available through Wheelchair Services, which is part of the NHS. The LEA/EA can provide computers for use at school. Find out in good time, as the process of obtaining equipment can be slow.

The Joseph Patrick Trust (part of Muscular Dystrophy UK) and other charities can assist with grants towards the cost of equipment.

Doctors are not experts in benefit issues. Muscular Dystrophy UK’s information and advocacy team can help you with these applications, if you are having any difficulties. They also have leaflets and factsheets explaining practical and financial support, as well as welfare benefits and what you are entitled to.

Benefits for families on Income Support can be affected by accruing large amounts of Disability Living Allowance (DLA) savings.

Will we need to give up work to care for our child?

There are no rights or wrongs in this situation. Many children with muscle-wasting conditions are in families where their parents work.

However, children with muscle-wasting conditions often require more support from their parents than other children their age. They may need help with practical tasks and have a range of appointments to attend, which may increase in frequency as they get older. As doctor’s visits and hospital appointments are generally during the day, you may wish to discuss options with your employer. You are entitled to ask for flexible working to accommodate the support you might need to give your child.

There are lots of different types of flexible working, for example, working from home or working part-time. Read more on the gov.uk website.

Get up-to-date advice on benefits and tax credits. Don’t assume you’re not entitled to help because you are working or have income/savings at a particular level. Not all benefits are income-related. A parent who gives up work to care for a disabled child is generally entitled to financial help.

Will we need to move? Will we need a bungalow?

Many families worry that they will have to move house. With expert advice, you won’t need to rush into any decisions. Children with muscle-wasting conditions will eventually need their own bedroom and a suitably equipped bathroom.

When your child starts to use a wheelchair, you will need to consider how they will get in and out of your house and how they will access communal rooms. As most children are diagnosed many years before these issues become pressing, there is time to plan accordingly. Bear in mind that housing issues can take a long time to sort out.

If you’re a council or housing association tenant, it’s advisable to let your landlords know at an early stage after your child’s diagnosis that major alterations are likely to be needed.

Tenants of private landlords should seek advice from an occupational therapist and the housing department, as it can be difficult to make adaptations to privately-rented properties.

An occupational therapist will help you by assessing your current and future housing needs. You can generally refer yourself to the occupational therapy department, usually based at the local Social Services.

Financial help cannot be given retrospectively, so seek advice on the funding of adaptations. Whether you’re an owner/occupier or a tenant, Muscular Dystrophy UK’s care and support team can advise you on what financial help you’re entitled to. Muscular Dystrophy UK’s care and support team can advise you in this regard. The charity’s Adaptations Manual is a comprehensive guide, which you may find helpful.