Supports Available for Parents of Children with Inherited Metabolic Disorders

Department of Health Assistance

• Long Term Illness Book
  This is a non-means tested provision to persons suffering from specified conditions. At the moment Phenylketonuria (PKU) is the only metabolic disorder specified though in practice most Health Boards consider favourably other conditions. This provision covers medicines, appliances and in-patient hospital stays relevant to the specified condition.
  
  
• Medical Card
  This is a means tested provision. The family means are assessed and if they fall below a certain threshold a medical card will be issued. A medical card covers medications, in-patient hospital stays and GP visits.
  Some treatments prescribed to metabolic conditions are not listed under the General Medicines Scheme. In such situations, these treatments can be applied for under the hardship scheme.
  
  
• Exceptional Circumstances
  In extreme cases a local Health Board may consider granting a Medical Card to a named child within a family who exceed the normal means test. The decision is made at the discretion of the Health Board balancing the child's medical need against the family resources.
  
  
• Drug Refund Scheme.
  This is a non-means tested scheme available to all families. This scheme can be accessed via local pharmacies or Health Authorities and provides that no family should spend in excess of 54 euro approx. per month on prescribed medicines.
  
  
• Domiciliary Care Allowance
  This is a monthly payment to all children over the age of six months who have conditions necessitating care above and beyond that which is normal for a child of that age. Application is made to the local Health Authority. Support from the child's Consultant is invaluable. An Area Medical Officer will then assess the child. Not all children with metabolic disorders qualify for this payment.
  
  
• Respite Care Grant
  This is an annual grant given to parents in receipt of Domiciliary Care Allowance. Application is made through the Health Authority.
  
  
• Community Welfare Officer
  The local Health Authority makes provision through Community Welfare Officers to assist with exceptional expense. Their assistance will be determined by an assessment of the family means and balanced against essential expense. Travel to and from hospital may be considered where trips are as frequent as weekly. These payments are discretionary.
  
  
• Dietary Allowance Scheme
  This allowance can be accessed through the Community Welfare Officer. It provides a payment of approximately ten euro per week to persons on a special diet.
  
  
• Home Help Service
  This is a service offered to persons who are unable to manage all their domestic responsibilities. Help can be arranged through the Health Authority or through voluntary organizations.
  
  Vol. Organizations include:
  
  • A Nurse for Daniel - caters for terminally ill children
    
  • Jack and Jill - can fund home nursing care or help for children from 0-4 years with developmental delay.
    
    
• Public Health Nurse (PHN)
  This person is a key support and a link to other community based services. The PHN will be contacted by the Metabolic Specialist Nurse and advised with regards to the child's condition and care needs.

Department of Social Welfare Assistance

• Carers Allowance
  This is a weekly means tested payment made to persons caring for a dependant child. This payment is determined by two factors:
  • That the child is in receipt of Domiciliary Care Allowance
    
  • That the family's total means are below a certain level.
    
    
• Carers Benefit
  This benefit is a weekly non-means tested payment made to a person who leaves work to care for a child in need of full time care and attention. It can be received for a total period of 65 weeks. The conditions are:
  • That the person has been in insured employment for a given period of time and paid the necessary contributions (minimum of 19 hours per week).
    
  • That the child has been medically certified to need full time care and attention or that the Domiciliary Carers Allowance has been awarded.

Revenue Assistance

• Incapacitated Child Allowance.
  This is a tax allowance payable where a child is permanently incapacitated by his/her condition. It is only payable in the most severe cases.

Voluntary Organizations

There are a number of voluntary organizations that provide charitable support to families with sick children. This support covers possible home nursing, convalescent breaks, and financial assistance with bills incurred during a period of crisis. The Medical Social Worker will be aware of these resources and will advise.