There are a number of reasons why children may have additional needs, but what’s for sure is that parenting a child with difficulties in a particular area can be both challenging and rewarding.
A number of health professionals offer support in the local community for families with children with special needs. Here’s an overview of some of the ways they can help you:
Community paediatricians are specialist doctors with particular expertise in looking after children with long term health problems. They assess and treat children with developmental problems and make referrals to other services as required.
Children’s community physiotherapy
Community physiotherapists provide assessments, therapy, practical advice, strategies and equipment to ensure children and young people with disorders or delay in their movement are able to develop and achieve their full potential.
Children’s community occupational therapy
Occupational therapists may get involved in assessing and treating children and young people with disorders and delays that limit their life skills and independence. They also provide support and equipment for families as appropriate.
Speech and language therapy
Speech and language therapists work with children and young people who have difficulties with speech, language and communication skills and /or eating, drinking and swallowing skills.
Diana nurses support parents in managing their children’s nursing care needs within the home environment. For children with particularly high levels of nursing needs, they can also offer continuing care support in the form of respite care. They also offer support with ordering equipment, respiratory physiotherapy and support for young people as they transition into adult services, as well as 24 hour end of life care where needed. The team also includes Macmillan Nurses and Child and Family Support Workers.
Nutrition and dietetics
Dietitians assess and treat children who have a nutrition or dietetic concern. They work with families and carers when feeding and hydration issues or clinical conditions are affecting the child’s growth, development and wellbeing. Our Home Enteral Nutrition Service (HENS) supports children with enteral feeding needs, such as nasogastric tubes or gastrostomy feeds. They ensure that children’s nutritional needs are being met and support with organising the equipment and prescriptions required.
Co-ordinating your child’s care
The chances are that you’ll have lots of health professionals supporting you and your child. There are services which help to bring everyone together to make sure that you know who is doing what!
These services allocate a key worker to a family who offers support , advice, help with completing benefit, grant or charity applications, and organise regular multi-professional meetings for you.
Parent and carer support groups
Various groups are available to support the parents and carers of children with additional needs. Your public health nurse (health visitor) or key worker will be able to let you know what’s available locally. For example:
- Leicestershire Downs’s Syndrome Support Group
- Council for Disabled Children
- Contact – for families of disabled children
Emotional support and counselling
Counselling and emotional support for parents with children with additional needs is also available. Again, your key worker or public health nurse (health visitor) will be able to put you in touch with local providers such as:
- Face to Face (Scope) – emotional support for parents of disabled children
- Rainbows Hospice
- CLASP The Carers Centre, Leicestershire and Rutland
- New Dawn Family Support Service
At times families require respite care. Discuss this with your key worker or public health nurse (health visitor), as they will be able to support you with getting in touch with local respite opportunities.
Making adaptations to your home
If you need your home to be adapted to accommodate the needs of your child, you can request an assessment by an Occupational Therapist and Grant Officer by contacting your local council. They can provide you with a Disablement Facilities Grant.
Benefits you can access
Children with additional needs may be eligible for additional benefits designed to help with the cost of their care.
For children under 16, the benefit is known as Disability Living Allowance. For young people over 16, the benefit is called the Personal Independence Payment.
You may also be entitled to claim carers’ allowance if you and your child fulfil certain criteria.
If you need any help completing applications, talk to your key worker, public health nurse (health visitor) or contact your local citizens advice service.
Some charities also offer financial help. For example:
- Leicester city local offer advice pages
- Leicestershire county local offer advice pages
- Rutland local offer advice pages
- NHS Personal Health Budget
Leicestershire Partnership NHS Trust runs a confidential secure text messaging service for parents of children aged 0-19 years called Chat Health. The service operates Monday to Friday between 9am and 5pm, excluding bank holidays. All texts will be responded to by a public health nurse (health visitor/school nurse) within 24 hours. Outside of the service working hours, you’ll receive a message back to inform you that your text will be responded to once the line reopens.
Should you require urgent health advice in the meantime, please contact your GP, visit an NHS walk-in centre or call NHS 111. For emergencies, dial 999 or visit A&E.
Leicester City: text 07520 615381
Leicestershire & Rutland: text 07520 615382