Domiciliary Care Allowance Review – CFAI Submission

 

The Domiciliary Care Allowance Scheme is currently being reviewed by the Department of Social Protection. In the current climate of cutbacks, this review is causing a high degree of concern to the CFAI and many other organisations. Many parents will already have received letters from the Department letting them know this review is underway.

 

About the Review

The review will examine the policy objective of the scheme, medical assessment and appeals processes, including an examination of the duration of review periods for the Scheme.

 

CFAI Submission

The Cystic Fibrosis Association or Ireland made a submission to the Domiciliary Care
Allowance Review Group on behalf of our members, and many thanks to everyone who provided feedback to us for this purpose. The following are some of the issues we highlighted:

Ireland has the highest incidence of Cystic Fibrosis in the world with almost 7 in every 10,000 people with the disease. The incidence of Cystic Fibrosis in Ireland is almost 3 times the average rate in other EU countries and the United States.


Parents of children with Cystic Fibrosis use this scheme to pay for the costs associated with the additional care requirements of their children as a result of having this disability. It ensures that parents can provide their children with access to the services and supports they need in order to stay as well as possible. CFAI outlined these additional costs in detail, including loss of income/time off work, physiotherapy expenses, expense incurred from the requirement for a high calorie, high protein diet, travel expenses for hospital appointments and admissions, fuel expenses, GP visits and others.


Cystic Fibrosis is a progressive disease; as people with cystic fibrosis get older their symptoms become more acute and complex. CFAI also pointed out that the cost of caring for people with
this disease, both in and out of hospital, will therefore increase as the person gets older. The  point was also made that the most prevalent underlying mutation that causes this disease in Ireland is also synonymous with more severe disease outcomes.


As Cystic Fibrosis is a genetically inherited, life-long disease and is progressive by nature, the argument was made that the Domiciliary Care Allowance should be automatically granted to our members and no further assessments or follow-up reviews should be required to assess their eligibility to this scheme.


CF is recognised by the State as being a chronic, long-term condition since it is one of few illnesses automatically included under the Long-Term Illness Scheme. It is also regarded as a permanently incapacitating condition under the Incapacitated Child Tax Credit Scheme. There is no cure for CF.


We hope the information provided in the submission with help convey the complexities of Cystic Fibrosis to the Review Group, as well as highlighting the importance of the Domiciliary Care Allowance in supporting families affected by this illness.

 

If you would like to read the full submission, please click here.