Caring for a child with a disability

Introduction

Disability can be diagnosed at any stage during a child’s development. A child may be found to have a disability before birth or around the time of birth. Sometimes a disability may not become apparent until later in your child's life when they have difficulty learning in school. In some cases children acquire a disability after an illness or accident.

When your child is diagnosed with a disability, it can be an emotional time. The HSE has advice for parents and guardians who get this news.

You and your child are entitled to the same services and benefits as all other families living in Ireland.

This page outlines services, supports and payments for children living with a disability. They apply whether your child was born with a disability or acquired it later.

The Department of Children, Equality, Disability, Integration and Youth has also published a directory of services and supports available for children with additional needs.

If your child is 18 or over, the Guide to entitlements for people with disabilities 2022 (pdf) has detailed information for adults with disabilities and their carers.

If you are worried about your child's development

Your GP does free developmental examinations in the weeks following your baby’s birth. Your public health nurse also monitors the development of your baby in their early weeks, months and years and provides information and support to parents.

Some children develop more slowly than other children. If you think that your child is not developing as they should, make an appointment with your GP or public health nurse as soon as possible.

Often there is nothing to be worried about, and many children catch up in their own time. If the GP or public health nurse is concerned, they can refer you to the service your child needs.

Getting a referral

Children who have mild or moderate difficulties may be referred to health professionals in their local primary care services. You can find out about these services at your Local Health Centre.

These services can include:

  • Speech and language therapy
  • Physiotherapy
  • Occupational therapy

Education

If your child is having difficulties in school, you should speak to their teacher or school principal. They will advise you on what to do next. This may include an educational assessment. Formal educational assessment of school-going children is generally carried out by the National Educational Psychological Service (NEPS). You can arrange a private assessment if NEPS psychologists are not available. Some parents choose private assessments. If your school arranges an assessment through NEPS, there is no charge for the assessment.

Children’s Disability Network Teams

Children with a range of significant difficulties may be referred to a Children’s Disability Network Team. This is a team of professionals with expertise in disability who work closely together. Other specialists may also be available to the team if needed.

Children’s Disability Network Teams provide services to children with complex needs aged from birth to 18 years. (Previously, some of these services were known as Early Intervention Services and School Age Services.)

The team will assess and identify your child’s needs and, together with you, develop a plan of action for providing services. This plan may include individual and group therapy and supports for families.

Children’s Disability Network Teams are led by the HSE or by disability organisations such as Enable Ireland, St Michael’s House or the Brothers of Charity. The HSE has published information on the Children’s Disability Network Teams (pdf) and how they work.

A Children’s Disability Network Team may include:

  • Psychologists
  • Nurses
  • Occupational therapists
  • Paediatricians (doctors specialising in the medical care of children)
  • Physiotherapists
  • Social workers
  • Speech and language therapists
  • Other professionals

Information about Children’s Disability Network Teams is available in different languages.

Your child may be referred to a Children’s Disability Network Team through your paediatrician, GP, public health nurse or school.

You can also make a referral directly yourself to the Children’s Disability Network Team in your area by filling in:

  • The Children’s Services Referral Form
  • An Additional Information Form for your child’s age group. This gives you an opportunity to describe your child’s development and what your concerns are.

You can get the Children Services Referral Form and the Additional Information Form on the HSE website.

Send the forms to the Children's Disability Network Team for your area.

Health professionals will review the information you provide in the forms to help decide the best service for your child. Unfortunately, there is often a waiting list for these services. While you wait, you can contact organisations who will provide you with information, advice and support.

Applying for an Assessment of Need

If your child has a disability or you think they may have a disability, you can apply to an Assessment Officer for an Assessment of Need. This identifies your child's health and education needs.

Everyone born on or after 1 June 2002 who has, or may have a disability has a right to an assessment.

After the assessment, you will get a report and a statement of the services that will be provided for your child.

Your child does not need an Assessment of Need to access health services. You can apply directly to services.

You can read more about the Assessment of Need and how to apply for one on the HSE’s website.

Other health services for children with disabilities

Your child may be eligible for a medical card or GP visit card depending on your circumstances. If you are getting Domiciliary Care Allowance for your child, your child is eligible for a medical card without a means test.

If your child has a condition that is covered by the Long Term Illness Scheme, you can get free medicines and appliances for the treatment of that condition.

Education supports

Early-years

Pre-school children with disabilities can generally attend mainstream pre-schools. All children are entitled to two year’s free pre-school education and early childhood care under the Early Childhood Care and Education Scheme. Some specialised pre-school services may be available in your area and many pre-schools have staff who are trained to work with children with special needs.

Children with a disability are entitled to an Assessment of Need of education supports and services (see above).

Primary and secondary school

Special needs education provides supports to help children with disabilities in primary education and post-primary education.

Special Educational Needs Organisers (SENOs) are responsible for allocating additional teaching and other resources such as assistive technology at local level.

Many areas have school transport for children with special needs.

The Visiting Teacher Service supports children who are deaf/hard of hearing or blind/visually impaired and their parents and families. The Summer Provision education programme provides additional educational supports during the summer to children with complex special needs.

Third-level education

There are also supports for third-level students with a disability. All third-level colleges have a disability or access office which is responsible for providing support and advice to students with disabilities. The DARE admissions scheme for students with disabilities is a third-level alternative admissions scheme for school leavers whose disabilities have had a negative impact on their second-level education.

Income supports

The Department of Social Protection provides the main income supports and payments for carers and people with disabilities.

Carers

The Domiciliary Care Allowance is a monthly payment made to the carer of a child with a severe disability who lives at home. All children getting Domiciliary Care Allowance are eligible for a medical card without a means test.

The main social welfare payments for full-time carers are Carer's Allowance and Carer's Benefit. You may also qualify for an annual Carer's Support Grant. If you get Carer's Allowance, you are entitled to a Free Travel Pass.

If you get other social welfare payments, you may be able to keep your main social welfare payment and get half-rate Carer's Allowance as well.

When your child reaches 16

When your child reaches the age of 16, they may qualify for Disability Allowance. If your child takes up employment, it may affect their Disability Allowance. For more information about this, see our page on disability payments and work.

If your child is getting Disability Allowance, but is not capable of managing money, the Department of Social Protection may appoint you as an agent to collect your child’s payment and act on their behalf. The money belongs to your child and you must use it for their benefit. If your child has substantial money or assets, they may be made a Ward of Court.

If your child is blind or visually impaired, they should apply for the Blind Pension four months before their 18th birthday.

Tax credits and reliefs

There are a number of tax credits and reliefs that can help with the cost of disability.

Tax credits

The Incapacitated Child Tax Credit is available to the parents or guardians of children who are permanently incapacitated. If you have more than one child who is permanently incapacitated, you can claim a credit for each child.

If you are married or in a civil partnership and you are jointly assessed for tax, you can claim the Home Carer Tax Credit if you work in the home caring for a dependent child who is getting Child Benefit.

Medical expenses and mobility aids

Tax relief on medical expenses is available on the cost of certain medical expenses such as doctors or consultants visits, physiotherapy or educational psychological assessments.

You can claim a refund on VAT paid for certain aids, appliances and housing adaptations needed for your child, for example, a communication aid designed for a child unable to speak or a special support chair. The relief is not allowed on services or when renting aids.

Disabled drivers and passengers

Under the Disabled Drivers and Disabled Passengers Scheme, tax relief is available for drivers and passengers with a severe and permanent disability to help with the costs of buying and running a specially constructed or adapted vehicle.

The scheme also provides:

  • An exemption from the payment of motor tax
  • An exemption from toll road fees
  • A fuel grant

Adapting your home

You may qualify for the Housing Adaptation Grant for people with a disability if you need to adapt your home to make it more suitable for a child with a disability.

Adaptations might include:

  • Adding an extra room
  • Making the house wheelchair accessible
  • Putting in a ground-floor bathroom and toilet.

An occupational therapist's assessment may be required. If you only require minor work, you can apply for the Mobility Aids Grant Scheme instead.

Planning for the future

Some parents choose to make extra financial provision for their child with a disability through a will, trust or other arrangement. Although a child with a disability may be maintained by their parents after the age of 18, this does not provide them with any special entitlement to provision in a parent’s will.

If you want to make specific provision for your child, get advice from a solicitor or other legal professional. You may also want to discuss the tax implications with an accountant and Revenue.

Options to protect your child’s future financial well-being

Deed of covenant: You may use a deed of covenant as a tax-efficient way to give money to a child aged over 18, but this could affect the child’s entitlement to Disability Allowance.

A trust: Another option is a trust from which your child may benefit after your death. Many parents use discretionary trusts to provide for a child with a disability without affecting entitlement to benefits.

Appoint a guardian: You may appoint a guardian in your will. This only applies if your child is under 18 when the will comes into effect. It is not possible to appoint a guardian for an adult child.

An occupational pension: Most public sector occupational pension schemes, and some private sector schemes, have provisions that allow for the pension arrangements for permanently incapacitated dependent children to continue for the child’s lifetime. Check your pension policy to see if this applies in your case.

Enforcing your child’s rights

If you are unhappy about the service you or your child has received, you can complain to the relevant body.

If you are not satisfied with the outcome of an appeal, contact the Office of the Ombudsman or the Ombudsman for Children which can investigate complaints about certain public services.

Where to get help

Children's disability services are for children and young people up to 18 years. The majority of these services are provided by voluntary agencies, funded by the HSE. Other services are provided directly by the HSE.

Primary care services

Your child's needs may be met by primary care services at your Local Health Centre. For example, if they have a speech delay, your local speech and language therapist can often help.

Children’s Disability Network Team

Children who have a range of significant difficulties may need a Children’s Disability Network Team. Your local Children’s Disability Network Team will include health and social care professionals, experienced in delivering services for children with disabilities. Each team member offers expertise in a particular aspect of child development.

Voluntary organisations and agencies

Many of the supports and services for people with disabilities are provided by disability organisations, funded by the HSE. A wide range of national and local organisations provide information, support and services independently and on behalf of the HSE.

Children in Hospital Ireland has information to help families prepare for their child having inpatient or outpatient hospital care.

Page edited: 28 July 2022