Parent Carers

Caring for a disabled child can make your daily parenting duties, such as feeding, toilet training and getting them to sleep, more challenging. However, advice and practical support are available to help you cope with everyday hands-on caring, as well as the wider medical, emotional and financial issues. This is particularly important if your child has complex needs.

 

Ask your local council about:

• Assessments of needs for children.
• Get a Social Worker for your child.

 

A disabled child may have problems with feeding and eating for many different reasons, such as:

• physical problems that cause difficulty swallowing, chewing, sucking or digesting certain foods
• limited mobility, which might make it difficult to sit up to eat or drink
• a learning disability, which could make it more difficult to learn appropriate behaviour at mealtimes.
• It might take longer for your child to be able to feed themselves, but developing the skills to do so can also help them in other ways, such as with speech and language development, and co-ordination.

 

Ask your health Visitor to make referral GP or a specialist consultant for example:

• A speech and language therapist
• A physiotherapist or occupational therapist
• A dietician

 

If a child doesn’t sleep well, tiredness can affect the whole family. Disabled children can have sleep problems for a range of physical reasons depending on their particular condition (such as muscle spasms or breathing difficulties). Children with some learning disabilities may find it hard to understand why and when they need to sleep. Ask you GP or health Visitor for advice.

 

Southend Carers Forum Can support Parent Carers with form filling and emotional support via Advocacy.

 

Some disabled children may not be ready to use the toilet until they're older, or they may take longer to learn. An occupational therapist can advise you about special potties or toilet seats if your child needs help with sitting, or about any bathroom adaptations that might be useful. A physiotherapist can also advise about issues such as moving and handling your child, or finding the best position for your child to be able to use the toilet and other equipment. Ask you GP or Social worker to refer you to the Occupational Therapist Team.

 

If you have a water meter and your child’s condition means that you have to do a lot of laundry, you can apply to your water supply company to cap the cost of your water under the OfWat WaterSure scheme.

 

If you're concerned about your child’s mobility, your GP may refer you to a nearby physiotherapist to assess their mobility needs. These aids (which can be loaned from the local hospital or community health service) could help your child:

• Walking aids
• Wheelchairs
• buggies and
• adapted seating
•  

Powered wheelchairs may not be available through your local NHS wheelchair service. If this is the case, you may be able to get a voucher towards the cost of a wheelchair of your choice. Ask your local service if they run a voucher scheme.

The charity Whizz-Kidz can provide children under 18 with mobility equipment that's not available from the NHS. They also offer wheelchair skills training. Go Kids Go! Also provides free wheelchair skills courses.

If your child gets the high rate mobility component of Disability Living Allowance, you may be able to join the Motability scheme to buy a powered wheelchair or buggy. If you drive, you could apply for road tax exemption and a Blue Badge for disabled parking.

 

- information from CarersDirect