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When Your baby Lives

Why Our Baby? WHEN YOUR BABY LIVES

While we’re conscious that this chapter will not be relevant to all families, in some situations our Trisomy 13/18 babies do stay with us longer than we may have thought at their birth. It is, therefore, worth giving some consideration to the information contained below.

Please be mindful of yourself reading this chapter; there is a lot of information to take in and it can be very daunting. Take your time reading it and do so in a manner that is manageable for you. Remember to be kind to yourself. In the event that your baby stays with you longer, things will get easier as they grow. The early days are difficult as there is so much to take in and get used to. But we promise it will get easier. The appointments will become less frequent, and you will become much more proficient at caring for them.

BRINGING YOUR BABY HOME

Depending on the circumstances, you may wish to consider bringing your baby home. At home, your baby will be in a family situation where the process of getting to know and care for them will be less clinical and more private. The constant visiting and travelling may be leaving you emotionally and physically drained. The decision to bring your baby home is one you should make in consultation with the medical staff at the hospital. But whatever decision you make, it will be the right decision for you, your baby and your family. The paediatric palliative care team and children’s outreach nurse will guide you.

There will be a number of considerations and decisions that you may have to make in advance of taking your baby home. They might include:

A Gradual Transition

It is not uncommon to make a gradual transition home with your new baby. In consultation with the medical professionals you might initially take your baby home for a few hours per day, then maybe an overnight stay, a weekend and, gradually work up to taking your baby home permanently, if you wish.

Family Circumstances

You are the best judge of your family/living situation. You may have other children, difficult living conditions or other family circumstances that require consideration or management, before taking your baby home.

Medical Equipment & Supplies

Speak to your hospital team about providing/organising the delivery of the required medical equipment and supplies before taking your baby home. Going forward, your children’s outreach nurse for palliative care will be able to advise you on medical supplies. While the amount of equipment and supplies required can be daunting, it will help to keep your baby safe and healthy. In addition, having it available when you get home will make the transition less stressful as you navigate this new path.

In some situations, equipment such as oxygen, an apnoea monitor, an oxygen saturations/heart monitor, a suction machine, a CPAP (continuous positive airway pressure) or BiPap (bilevel positive airway pressure) machine, and a feeding pump will be required. If you are breastfeeding, a hospital grade breast-pump will also make life easier for you.

Other supplies that you may require before taking your baby home include:

replacement masks/tubes/ambu-bags for your baby’s oxygen,
replacement apnoea probes and tape,
replacement probes and tape for the oxygen saturations monitor,
tubes for the suction machine,
replacement masks for the CPAP/BiPap machine,
feeding pump containers and ‘giving sets’,
nasal/abdominal feeding syringes, dressings, skin barrier cream, replacement tubes and other paraphernalia and medication syringes.

It might also be useful to have a reflux pillow/arrangements for positioning your baby at an angle to prevent reflux. Most babies/children with T13/18 have ongoing issues with reflux, which can cause/contribute to apnoea spells/breathing issues. It is generally recommended to keep the angle at or below 45 degrees. This position can be achieved by placing a baby mattress wedge or a rolled-up towel under your baby’s mattress. Placing your baby on his/her side may also help your baby’s strider, if they have one.

Readmission to Hospital

Before taking your baby home, check with their paediatrician/medical team what the hospital’s policy is on readmission. Most hospitals have open admission for T13/18 babies.

BUMBLEance is the official Children’s National Ambulance Service of Ireland. They provide safe and comfortable transportation for Ireland’s youngest patients as they travel between their homes and hospitals, hospices, treatment centres, and respite centres nationwide.

The BUMBLEance service is the first of its kind in the world. It has all the amenities of a regular ambulance, but it includes the all-important extras to make a sick child’s journey as safe, comfortable and entertaining as possible.

Ongoing Professional Support

If there are any aspects of caring for your baby at home that you feel unsure of, your paediatrician, nurses in the S.C.B.U./hospital baby ward, family doctor or public health nurse will advise you on how to deal with situations that may arise. You will have regular appointments with your baby’s paediatrician and other medical specialists, who will also be able to support you. You will not be alone.

Telephone Contacts

Some parents find it useful to have emergency phone numbers close to hand that they can ring in an emergency, or if they are worried about their baby, or just need advice. Some useful numbers to have available might include:

The S.C.B.U./hospital baby ward
Public health nurse
Your family doctor/GP
Other useful contacts at the back of this book.

Tube Feeding

Many parents of babies with Patau or Edwards’ Syndrome tube feed their babies. You will receive training on inserting/“passing” a tube in the hospital before you take your baby home. While this may be daunting at first, in time it will become second nature to you. In the initial stages, if you do not feel confident about inserting the tube, you may be able to arrange for a nurse in your locality to assist you. Ask the hospital to arrange this for you, or speak to your outreach children’s nurse/Jack & Jill Liaison Nurse.

Possibility of Your Baby Dying at Home

In some circumstances families will express a preference for their baby to pass away at home, instead of a hospital or children’s hospice setting. While this is a highly emotive and difficult consideration and conversation, it is worth talking it through with your partner/family/medical team. Many parents whose baby died at home report that it was a peaceful experience. However, your family must decide what is best for you. Whatever decision you make, it will be the right decision for you, your baby and your family.

CARING FOR YOUR BABY

Contained below is a list of common issues that babies and children with Trisomy 13/18 experience. Your baby may have none or very few of these problems or she may experience more difficulties. Each child is unique. It’s important to link in with your baby/child’s medical team as soon as you suspect a new/re-emerging issue so you and your baby can be supported.

Apnoea (Breath Holding)

Apnoea is most common in infancy, and while some children will outgrow it, others will continue to have such issues as they age. An apnoea is when the baby/child stops breathing without warning and becomes limp and blue.

There are two types of apnoea; central and obstructive. Your baby might experience both/one/none of these types of apnoeas. If you notice your baby has stopped breathing, move and stimulate them to encourage them to remember to breathe. Over time you will learn if it is a central/obstructive apnoea. If it is an obstructive apnoea it can help to reposition your baby/child, which for some is on their side with their airway opened up (head back, but not too far back as this can restrict the airway also). In some instances resuscitation may be required. However your baby will usually begin to breathe again without any assistance.

It would be wise to speak with the hospital team about resuscitation training before leaving the hospital. They can provide training for you and your partner/another family member on resuscitating your child, which will improve your confidence and ability to deal with such an event, should it occur. This training can be daunting and emotional, so be kind to yourself in acknowledging this. But, in time, you will know your child better than anyone, and will be the best equipped to support them.

Eye Care

Babies and children with T13/18 are prone to eye infections, and many have complex eye and visual issues. It might be useful to speak to your baby/child’s ophthalmologist about conducting a Visual Evoked Potentials (VEPs) examination if they think there are eyesight issues. This will help determine if there is some working eyesight or light perception.

If your baby has a tendency to eye infections, careful attention to bathing the eyelids can help. Clean the lid edges using a sterile saline solution, wiping away from the direction of the nose.

If your baby suffers from sensitivity to bright light, avoid placing them in direct sunlight or facing strong light. Shade their eyes if necessary.

If your baby/child is visually impaired, they might enjoy seeing coloured lights, light shining through coloured windows/film, light-up toys and music. It’s important to stimulate your baby/child’s vision as early as possible. There are supports available, including the visiting teacher of blind/visually impaired, the National Council for the Blind of Ireland (NCBI), Child Vision and The Anne Sullivan Foundation for the DeafBlind. Each of these respective services are available to provide advice and support on stimulating vision, child development and parental networking, and many will provide remote support if you are unable to travel.

Ear Care

Some babies/children with T13/18 have hearing impairment issues. It is important that your paediatrician refers you to an audiologist as early as possible to ensure your baby receives the best intervention available and accesses hearing aids or cochlear implants early, should they require them. This will aid their development and support their engagement with their family and environment.

The audiologist will also advise you on caring for any issues that your baby/child may have with their ears, and can refer you to the visiting teacher of the deaf/hard of hearing. An additional early intervention service that might benefit your child is The Anne Sullivan Foundation for the DeafBlind.

Heart Care

Some babies/children with T13/18 are born with heart defects or other cardiac issues. If your baby’s heart defect is relatively mild then it is best to treat them as normally as possible. However, if their heart condition is serious or terminal, it is advisable to take direction from their cardiac team and to:

Give small feeds on a frequent basis,
Consider having oxygen in the house in the form of an oxygen cylinder and a special mask, available through your health organisation.

Immunisations

Studies in the USA conclude that there is no evidence for an increase in adverse reactions to immunisations in babies and children with Patau or Edwards’ Syndrome. Your paediatrician or GP can advise you on their vaccination schedule.

Infection

Babies with chromosomal abnormalities tend to get infections more easily than other children. They can be more susceptible to (for example):

Upper respiratory infections such as colds and bronchitis,
Pneumonia,
Ear infections,
Eye infections,
Urinary tract (kidney) infections, and
PEG/Mic-Key Button infections.

It can sometimes be difficult to detect the site of your baby/child’s pain or infection, particularly if they are non-verbal. It can be useful to have a supply of infection swabs and urine sample containers in the home, so that you can collect a sample and drop it to your GP for swift testing, in order to determine the site of infection. This will allow you to treat the infection without delay.

Irritability

Irritability can be a feature of some babies born with Patau Syndrome. Poor feeding, colic, reflux of food, constipation, or an underlying medical problem associated with the eyes, heart or kidney could all be contributory causes. One area which could be explored in consultation with your paediatrician is irritation of the brain due to the abnormal electrical activity. All suspect causes should be thoroughly investigated in order to keep your baby and you content. It may take a process of elimination to determine the cause of irritability, and it may be a simple solution such as introducing reflux and/or colic medication, a regular laxative and massage for constipation etc.

Seizures/Convulsions

Epilepsy is a neurological disorder where brain activity becomes abnormal, causing seizures or sometimes loss of awareness. While not all children with T13/18 develop epilepsy, a large majority do. A neurology team will likely perform an electroencephalogram (EEG) on your baby/child to determine if they have epilepsy. During the procedure small sensors are placed on your baby/child’s scalp, which pick up the electrical signals from their brain and record them on a computer. The procedure will not interfere with your baby’s brain and it won’t cause them any pain.

There are two groups of epileptic seizures; they are focal (partial) seizures and generalized seizures, and numerous types of seizures. The seizure will manifest differently, depending on the group or type of epilepsy that your baby/child has. Some examples include: shaking/twitching particular parts/all of their body, changes in eye-sight, sudden falling/dropping, staring blankly for a few seconds, sudden jumps/startles etc. For some babies/children with T13/18 who develop epilepsy, the seizures can be accompanied/followed by apnoea/unconsciousness, and most will fall into a deep sleep. In addition, some babies/children can start with one type of seizure, but later develop another. While some children will demonstrate a number of different types of seizures.

Treatment with medication can be successful for children with epilepsy. However, while less common, others might require surgery. Some children with T13/18 will require lifelong treatment to control seizures, but for others, they may outgrow the condition with age. It’s not uncommon for children with T13/18 to outgrow epilepsy, but for the condition to re-emerge at a later age.

It is important to talk to your neurology/paediatric team about how to intervene or deal with your baby/child’s seizure or accompanying apnoea. You will be taught the best way to look after your baby during the episode. Your paediatrician may prescribe medication to control the seizures.

Sleeplessness

Frequently, babies with Patau or Edwards’ Syndrome do not sleep well at night. Contributory causes could be: feeding problems, seizures, obstructive/central apnoeas, brain irritation, or other medical problems. It is worthwhile seeking medical advice to solve the problem. A good night’s sleep will help you give better quality care to your baby, and your baby will be more content.

Cleft Lip and/or Palate

A cleft lip is a gap in the baby’s lip where the tissue has failed to grow/join together.

A cleft palate is a gap in the roof of the baby’s mouth and is often combined with a cleft lip.

Feeding your Baby: Babies with a cleft lip and/or palate find it difficult to create a seal between their mouth and nipple or bottle teat, and cannot latch/suck properly. Sometimes liquids can come down through the baby’s nose. Special teats are available to help babies to feed more effectively. The hospital nurses/speech and language therapist will advise you on the safest way to feed your baby and maintain oral hygiene.

Surgery: Many babies with Patau or Edwards’ Syndrome have undergone successful surgery for cleft lip and/or palate. The situation should be assessed carefully with the appropriate professionals. You may also like to talk to a parent who decided to repair their baby’s cleft lip and/or palate.

The Cleft Lip and Palate Association of Ireland (CLAPAI) can provide more information. See Useful Contacts.

Oscar enjoying himself at the seaside

Early Intervention

While there is no certainty around how long you will have your baby, it is important to plan as though they will live a longer life. To aid their development and to ensure they live the best quality life that they can, it is important to engage with the early intervention team in your locality. This team can be accessed through your public health nurse, and while the services available depend on the locality, it generally includes professionals such as a physiotherapist, occupational therapist, speech therapist, early intervention social worker, psychologist, among others. These professionals can advise and support you to access any special needs equipment that your baby may require, as well as how to handle your baby (to support your own physical health) and facilitate their development.

As mentioned previously, other early intervention services that might benefit you and your baby include the visiting teacher of blind/visually impaired, the visiting teacher of the deaf/hearing impaired, the National Council for the Blind of Ireland (NCBI), Child Vision and The Anne Sullivan Foundation for the DeafBlind.

Never hesitate to seek medical advice should you become concerned about any aspect of your baby/child’s health. Advice may be sought from the Special Care Baby Unit at the hospital, your baby’s paediatrician, GP, public health nurse or other appropriate professional.

ACTIVITIES FOR YOU AND YOUR BABY

Babies with Patau and Edwards’ Syndrome will not generally develop at the same rate as a typical baby, and many will never reach the milestones that typical children meet. Each baby/child is an individual and as parents you will feel happy and proud when your baby expresses their personality and makes small achievements.

As your baby develops, the hospital or community early intervention team will advise you on appropriate exercises and activities to stimulate your baby. However, to begin with, these simple activities may be enjoyable and beneficial for you and your baby:

When carrying your baby, check that their head is not buried in your chest or shoulder.
Gentle manipulation will help loosen the baby’s clenched fists or thumbs.
Gentle leg exercises will encourage them to have a bowel motion.
Arm and leg exercises can improve the tone of the muscles.
Your baby may enjoy kicking without a nappy on, or may move their arms or legs in the bath.
As they get older, they may like to sit up in a bouncer or special chair with their back well supported.
Even if your baby has problems with sight or hearing, try to develop their five senses as much as possible. Concentrate on your baby’s own strengths so that they may experience life to the full.
Smile at your baby and encourage eye contact.
Hang mobiles or brightly coloured objects over your baby’s cot or in a position where they might see them.
Talk to your baby and encourage other family members to do so.
Your baby may enjoy nursery rhymes, songs or musical toys. Sing and play music regularly for them to enjoy.
In summer, weather permitting, take your baby out for a walk or into the garden. They may enjoy a gentle breeze, the sight of the flowers, the washing blowing, the singing of the birds or the smell of newly cut grass. Don’t forget the cat-net if you leave your baby in the pram.

DEVELOPMENT OF YOUR BABY

Many professionals tell parents that a diagnosis of Patau or Edwards’ Syndrome means that their baby/child will never interact with their environment or that the condition is incompatible with life. While this is true in the majority of cases, it is not always the case and many surviving children do develop and make progress – albeit at slower rates than typical children. According to a survey carried out in the United States in 1994, many babies with Patau and Edwards’ Syndrome do the following before their first birthday:

Smile responsively,
Hold up their head,
Watch a toy or face,
Reach for an object,
Laugh out loud.

Before their second birthday many children:

Sit up with help,
Sit up alone,
Say consonant sounds,
Roll over.

In later years a few children cruise around the furniture or manage to walk with a walker. Although the surviving children are generally severely developmentally delayed, they can achieve some of the skills of childhood and they can continue to learn. Don’t lose hope – believe in your child and engage with as many early intervention services as you can, to assist in your child’s global development.

RESPITE CARE

The role of taking care of your baby full time can be very demanding, both physically and emotionally. It is important, therefore, to take regular rest breaks. Respite care gives you time to rest, devote more time to other children, spend some time with extended family and friends, and get a good night’s sleep without the need to continuously watch over and care for your child’s complex medical needs. Following a break you will feel refreshed and better able to care for them again.

Do not feel guilty about leaving your baby for a few hours, overnight, a weekend or longer. Special children are just that – “special” – and their life should be shared with other members of family, friends and health care workers. You are still their parents, but by being human we all need a little help and support. Others will enjoy the opportunity to care for and spend time with them, and your baby/child will have professional 24-hour care, while also enjoying a change in routine and scenery.

Even if your baby is given a limited life expectancy or you do not feel the need to avail of any of these services, it is worthwhile to become aware of the respite care facilities in your area and to make them aware of you and your baby’s existence. You never know when you might need emergency access to it. Family events, holidays, time with your other children, or just simply time for yourself make respite care very desirable. Having your baby admitted to residential care does not take away your rights as parents and you will be free to visit, phone, take your baby out etc. at any time.

Respite care or temporary care in Ireland may be based in your own home, the community or in an institution, and is provided for a person with a disability in order to enable the carer to take a short break, a holiday or a rest. It can cover very short-term respite, for example a “babysitter”/Jack & Jill nurse for an evening, or a much longer arrangement for a holiday. In practice, respite care is provided to a varying degree at a number of locations around the country – in some cases by your local health office and in others by voluntary organisations. To find out what is available in your area, contact the Disability Services Manager in your local HSE office, or your public health nurse might be in a position to advise you.

Ellen during Christmas lockdown 2020

ENTITLEMENTS

Contained below are the health care and financial entitlements for families caring for medically complex children. It primarily contains information pertaining to the Republic, but information pertaining to Northern Ireland has also been included at the end.

Republic of Ireland

Infant Care Services and GP Visit Card

The GP who attends to the mother also provides care for the newborn baby. This includes two developmental exams during the first six weeks following the baby’s birth, which are free of charge. The baby’s entitlement to free GP services thereafter depends on: (i) whether the parents have a medical card, (ii) the child is in receipt of a GP Visit Card, which is free and accessible to all children under the age of six years, or (iii) you have a child for whom you are getting Domiciliary Care Allowance who is eligible for a medical card without a means test.

The under 6’s GP Visit Card covers: free GP visits, assessments at ages 2 and 5, GP home visits, out-of-hours urgent GP care and care for children with asthma. Medication costs and hospital charges are not covered. Prescription drugs are not free but may be covered by the Drugs Payment Scheme. Your GP may not be on the list of GPs providing service for under 6’s GP Visit Cards; if your GP is not taking part in this scheme, you need to find another GP. You can register online or download the form. Post the completed form to: GP Visit Card – Under 6s, PO Box 12629, Dublin 11. LoCall 1890 252 919

If the child does not have a medical card or GP Visit Card, you can register here:

https://www2.hse.ie/services/medical-cards/medical-card-for-domiciliary-care-allowance.html

The public health nurse also visits the mother and baby at home during the first six weeks after birth.

Charges in Public Hospitals

Hospital charges for children do not apply in the following situations:

Medical card holders,
Children up to six weeks of age,
Children suffering from prescribed diseases and disabilities.

The HSE may also provide the service free of charge outside of these situations, in cases of excessive hardship. As mentioned previously, if you have a child for whom you are getting Domiciliary Care Allowance, the child is eligible for a medical card.

If you are in a public ward under the care of a consultant for treatment and you remain overnight, you are receiving in-patient services.

If you are admitted to the hospital under the care of a consultant where you do not require the use of a bed overnight and your discharge from hospital is planned, you are receiving day services/out-patient services.

Community Health Services

Following the birth of your baby, your public health nurse will visit you and your child at home, usually within 72 hours of discharge from hospital, but also making additional visits as necessary. Public health nurses provide both general health and specific developmental advice to parents and monitor the development of the child (4 development checks at different stages). If the public health nurse has any concerns, the child will be referred to the area medical officer for a development examination. This examination covers all aspects of the child’s development, including hearing, sight, language development, physical development, etc, and is offered to infants irrespective of the family’s income.

Problems that are identified at this examination may be treated free of charge at outpatient hospital departments and any subsequent treatment is free as a public patient. Most local HSE centres offer additional doctor and public health nurse appointment clinics for those parents who have concerns about their child’s development. Your child may be entitled to free nappies at the discretion of your local HSE. Your public health nurse will assist you with this.

Early Intervention Team

The Early Intervention Team is for children aged 0-6 years and their families who have complex developmental needs. Depending on your locality, early intervention is available for children aged 0-5 years as these areas would have a school-age team in place. Refer to your local Primary Care Team (at your local HSE) for further information. The team comprises of an occupational therapist, clinical or educational psychologist, physiotherapist, social worker and speech and language therapist.

Medical Cards in Ireland

Persons are entitled to a medical card where they are unable, without undue hardship, to arrange for the provision of medical services for themselves or their dependents. In determining eligibility, the local HSE will have regard to the financial circumstances and medical needs of the applicant. In this regard, income guidelines have been drawn up for local HSE centres to assist in deciding a person’s eligibility. However, even in circumstances when your income exceeds the guidelines, you may be still eligible for a medical card if: (i) your baby requires an excessive amount of medical services, or (ii) you qualify for the Domiciliary Allowance in respect of caring for a severely disabled child. You should apply for this card as soon as possible after the baby’s birth.

Persons who qualify for a medical card are entitled to:

Free general practitioner (GP) services, with a choice of doctor.
Free out-of-hours GP services.
Prescribed drugs and medicines free of charge (some prescription charges now apply).
Hospital in-patient and out-patient services.
Free consultancy services.
The services of a social worker.
Dental, optical and audiology services.
Aids and appliances for home use, e.g. oxygen, feeding tubes, suction machine, medical supplies etc.

These can usually be arranged through the hospital or your local public health nurse. Free travel vouchers may be available to visit children with intellectual disabilities who are in residential centres or in hospital for long periods of time. Application should be made through the HSE.

The quickest way to get a medical card or GP Visit Card is to apply on-line. If you are not eligible for a medical card you will be automatically assessed for a GP Visit Card. To apply for a medical card by post, download the form or LoCall 1890 252 919. Post the completed form to the National Card Unit, PO Box 11745, Dublin 11, D11 XKF3.

You may not qualify for a medical card based on the means test, but if you have medical expenses you may qualify for a discretionary medical card. A discretionary medical card gives you the same services as a means-tested medical card. You must include evidence of medical expenses and a medical report in your application. Discretionary medical cards are issued for a specific time frame. The time frame will depend on your circumstances. Apply on-line.

Drugs Payment Scheme

Non-medical card holders and people with conditions not covered by the Long Term Illness Scheme can use the Drugs Payment Scheme. Under the scheme, no individual or family unit pays more than €80 per calendar month towards the cost of approved prescribed medicines.

There is no means test for a DPS card. You can apply on-line, to apply by post download the form or LoCall 1890 252 919 to order one by post. Post the form to: Client Registration Unit, PO Box 12966 , Dublin11, D11 XFF3.

Domiciliary Care Allowance

Domiciliary Care Allowance is a monthly payment for a child aged under 16 years with a severe disability who requires ongoing care and attention, substantially over and above the care and attention usually required by a child of the same age. It is not means-tested.

Your child must be resident in the Irish State, your child must live at home with the person claiming the allowance for five or more days a week. If your child is in full-time residential care, you are not eligible. After your application is received, a medical assessor will review the information you provide to decide whether your child meets the criteria for DCA. The assessor will not see your child in person, so it is important to include as much information as possible. If your child is in residential care but is at home for two days or more a week, you may get a half-rate payment.

Download a DCA form ( Dom Care 1). You can get an application form by texting“ FORM DCA” followed by your name and address to 51909 (standard text rate apply) or by dropping into your Intreo Centre or Social Welfare Branch Office or local Citizens Information services. Post your form to: Social Welfare Services office, College Road , Sligo. Email: domcare@ welfare.ie. Phone No: 071 915 7100 or 1890 500 000.

Carer’s Support Grant

An annual payment made to carers who get carer’s allowance, carer’s benefit or domiciliary care allowance (DCA). The scheme name was changed from the Respite Care Grant in 2016. The Carer’s Support Grant is paid once each year, usually on the first Thursday of June. The payment is made regardless of the carer’s means but is subject to certain conditions. You do not need to apply for the Carer’s Support Grant; it will be paid automatically if you are getting carer’s allowance, carer’s benefit or domiciliary care allowance (DCA). You can download a Carer’s Support Grant application form or get one from your Intreo Centre or Social Welfare Branch Office or Citizen’s Information Centre.

You can apply for the Carer’s Support Grant by completing the CSG1 application form with the relevant supporting documents to: Social Welfare Services Office, Government Buildings, Ballinalee Road, Longford, N39 E4E0

Email: Respitecare@welfare.ie Phone No: 043 3340000 Locall: 1890 927 770

Long-Term Illness Scheme

If you are suffering from one of a list of prescribed diseases or disabilities, including mental disability, you are entitled to the drugs, medicines and medical and surgical aids and appliances prescribed for that disease free of charge. If you need a medical or surgical appliance, for example, a nebuliser, you can get it from your local HSE office. Consumable appliances or supplies are available through your community pharmacy, for example, syringes and diagnostic strips

There is no means test for this scheme.

To apply download an application form or LoCall: 1890 252 919 to order one.

Send completed form to: LTI Client Registration Unit, PO Box 12962, Dublin 11, D11 XFF3.

Your doctor or consultant will need to sign the form and provide a medical report.

Supplementary Welfare Allowance

Basis Supplementary Welfare Allowance is a weekly allowance paid to people who do not have enough income to meet their needs and those of their families. Apply to the Department of Employment Affairs and Social Protection’s Community Welfare Service at your local office. You must fill in a Supplementary Welfare Allowance Claim Form (SWA1). Phone No; 01-856 0088.

Private Medical Insurance

If you have private medical insurance such as VHI, LAYA, Irish Life Health etc., it is important to inform your provider within a reasonable time of your baby’s birth. If you choose private treatment, you will be liable for consultant and hospital fees.

Incapacitated Child Tax Credit

The Incapacitated Child Tax Credit is available to the parent or guardian of a child who is permanently incapacitated, either physically or mentally and where there is a reasonable expectation that the child will be unable to maintain themselves when over 18. PAYE customers can make a claim in the current tax year using PAYE Services in My Account. If you are unable to access My Account, you can claim the credit by completing Form ICC1 in respect of the qualifying child. You must also provide a certified Form ICC2 from the child’s medical practitioner. You can send both forms to your Revenue Office

Details of this special tax free allowance is available from your tax office or the inspector of taxes who deals with your tax affairs. See: https://www.revenue.ie/en/personal-tax-credits-reliefs-and-exemptions/children/incapacitated-child-credit/index.aspx

Medical Expenses

A tax refund is available for money spent on additional medical expenses not covered by the Long-Term Illness Scheme. Expenses include doctor’s bills, medication, supply and repair of medical and surgical appliances used on medical advice and nursing home expenses.

You can claim relief on health expenses that you have receipts for after the year has ended. If you are paying nursing home expenses, you may be able to claim relief during the year. You can claim relief on the last four years’ health expenses. If you have private health insurance you can claim tax relief on the portion of those expenses not covered by your insurer. The quickest and easiest way to claim is by using the online service MyAccount to complete an Income Tax Return. If you are self-assessed sign into ROS and complete the health expenses section on your annual Form 11. If you are unable to use these methods contact your local Revenue Office.

See: https://www.revenue.ie/en/personal-tax-credits-reliefs-and-exemptions/health-and-age/health-expenses/how-do-you-claim-health-expenses.aspx

Housing Adaptation Grant

The Housing Adaptation Grant for People with a Disability Scheme provides grant aid to applicants to assist in the carrying out of works that are reasonably necessary for the purpose of rendering a house more suitable for the accommodation needs of a person with a disability. The scheme is administered by local authorities. This grant is means tested, the grant is available to households whose gross annual income does not exceed €60,000. You can download an application form or you can get a copy of the form from the Housing Grants Section of your local authority or their website. Fully completed application forms should be returned to your local authority office.

See:https://www.citizensinformation.ie/en/housing/housing_grants_and_schemes/housing_adaptation_grant_for_people_with_disability.html

Mobility Aids Grant

The Mobility Aids Grant scheme provides grant aid to cover a basic suite of works to address mobility problems. The scheme is administered by local authorities. The effective maximum grant under the Mobility Aids Housing Grant Scheme is €6,000, which may cover 100 per cent of the costs of works. This grant is means tested. You can download the form or get a copy of the form from the Housing Grants Section of your local authority or their website. Fully completed application forms should be returned to your local authority office.

Disabled Passengers

Parents caring for a severely and permanently disabled child who buy a car for their use may be entitled to claim: exemption from VRT, refund of VAT, exemption from motor tax, refund of duty paid on petrol and diesel (max 2730L), exemption from tolls on each road in the state.

In order to avail of this scheme, applicants must be in possession of a Primary Medical Certificate (PMC). The medical assessment and the issuing of the certificate is carried out by a senior area medical officer attached to your local health office. The scheme is open to drivers and passengers with physical disabilities.

You can apply online through Revenue’s Ros and MyAccount facilities. If you do not have online services you can submit a paper form, this can be obtained from Revenue’s website or from the forms and leaflets section. Phone No: 01 738 36 75 (Monday to Friday). You can post your application for the scheme to: Office of the Revenue Commissioners, Central Repayments Office, Freepost M: TEK II Building, Armagh Road, Monaghan, H18 YH59 Phone No: 01 738 36 71.

See:

https://www.revenue.ie/en/importing-vehicles-duty-free-allowances/guide-to-vrt/reliefs-and-exemptions/scheme-for-persons-with-disabilities.aspx

The Disabled Drivers Association provides advice on aids and adaptation of cars:

http://www.ddai.ie

For more information on your health service entitlements see here:

http://www.citizensinformation.ie/categories/health/entitlement-to-health-services

For more information on “entitlements” in the Republic of Ireland, telephone:

Department of Social & Family Affairs: LoCall 1890 662244
Citizens Information Service: LoCall 1890 777121

Or contact your local Intreo Office or Citizens Information Centre.

Northern Ireland

Every baby/child gets complete free medical care until the age of 16 years or after (depending on circumstances).

Everybody is allocated a health visitor after registering with a GP. The health visitor introduces a social worker and gradually all other experts and professionals get involved, e.g. Department of Education, occupational therapist, physiotherapist etc.

Aids and equipment are supplied as needed.

For further information on your entitlements see:

https://www.nidirect.gov.uk

Useful Website Links

https://www.welfare.ie/

https://www.citizensinformation.ie

https://www.revenue.ie/

https://www.irlgov.ie/

https://www.disability-federation.ie/

https://www.ddai.ie

https://www.nidirect.gov.uk

This information on entitlements is intended as a guide only and does not purport to be a legal interpretation.