CFAI Submission to the Domiciliary Care Allowance Review Group

The Cystic Fibrosis Association or Ireland (CFAI) welcomes the opportunity to provide feedback to

the Domiciliary Care Allowance Review Group.

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.1

Cystic Fibrosis is a life-threatening, inherited disease that primarily affects the lungs and digestive

system, but also other organs of the body such as the liver, kidneys, reproductive system and

pancreas. A build-up of mucus can make it difficult to clear bacteria and leads to repeated cycles of

lung infections and inflammation, which eventually leads to irreversible damage of lung tissue. As a

result, parents of a child with Cystic Fibrosis will have to ensure the child undergoes a daily routine

of physiotherapy, nebulised medications and enzyme replacement therapy; for these reasons they

will require attention and supervision substantially in excess of another child of the same age.

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.

Cystic Fibrosis is a progressive disease; as people with cystic fibrosis get older their symptoms

become more acute and complex. The cost of caring for people with this disease, both in and out of

hospital, will therefore increase as the person gets older (See Annex 1 for more information).

The CFRI Annual Report from 2010 reported that 90.3% of CFRI enrolees have at least one delta F508

allele, and such people with CF tend to have more severe disease.2 To put this into perspective, in

addition to having the highest incidence of CF in world, the most prevalent underlying mutation that

causes this disease in Ireland is also synonymous with more severe disease outcomes.

1 Farrell PM. Journal of Cystic Fibrosis 2008 Sep: 7 (5) 450-453 which revealed a mean prevalence of

0.737/10,000 in the 27 EU countries which is similar to the value of 0.797 in the United States and only one

outlier, namely the Republic of Ireland at 2.98/10,000 population. Recently revised to three times the average

in the US and the EU.

2 Cystic Fibrosis Registry of Ireland (CFRI) Annual Report 2010.

http://www.cfri.ie/docs/annual_reports/CFRI2010.pdf

As Cystic Fibrosis is a genetically inherited, life-long disease and is progressive by nature, we would

argue 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.

While survival ages are slowly increasing in Ireland, the median age of death of people with Cystic

Fibrosis is just 28.5 years of age.3

We hope this information, and the feedback contained in the enclosed submission, helps you

appreciate the complexities of this progressive disease and highlights the importance of the

Domiciliary Care Allowance in supporting families affected by this illness.

If there is any further information you require on Cystic Fibrosis, please do not hesitate to get in

touch.

Kind regards,

__________

CEO

Cystic Fibrosis Association of Ireland

Acknowledgements:

This report was written by Alica May, Services and Information Officer at CFAI, with feedback

acquired through consultation with our members and healthcare professionals. Input was also

received from CFAI staff members and CF Advocates Tomás Thompson and Caroline Heffernan.

3 Cystic Fibrosis Registry of Ireland (CFRI) Annual Report 2010.

http://www.cfri.ie/docs/annual_reports/CFRI2010.pdf

Review Group on Domiciliary Care Allowance

Public Consultation

Submission from:

Individual Parent/family of child with a disability Yes No

Other Yes No

Organisation Disability organisation Yes No

Other NGO Yes No

Public body Yes No

Other Yes No

Name: The Cystic Fibrosis Association of Ireland

Contact person (If organisation): Alica May

Contact e-mail/phone no: amay@cfireland.ie

Address: CFAI, 24 Lower Rathmines Rd, Dublin 6

About your submission

Please make your submission under the headings below. If you do so, it is easier for the Review

Group to analyse what the opinions and suggestions are. It is not necessary to make a submission

under each heading if you do not wish to.

While the following are some suggested topics you may want to comment on, you are not confined

to these.

Closing date for receipt of submissions is the 28th September 2012 and should be returned to:

Roy Baldrick, secretary to the review group, DSP, St. Oliver Plunkett Rd. Letterkenny, Co. Donegal.

Freedom of Information You should be aware that the submissions will normally be available under Freedom of Information

request.

For example:

What is your opinion on what parents use the scheme for?

Do you feel the purpose of the scheme should be about acknowledging

the degree of care and supervision required by the child relative to children in general

the additional costs associated with having a child with a disability

some other objectives?

Your submission:

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.

Cystic Fibrosis is a progressive disease; as people with cystic fibrosis get older their symptoms

become more acute and complex. The cost of caring for people with this disease, both in and out of

hospital, will therefore increase as the person gets older (See Annex 1 for more information).

The CFRI Annual Report from 2010 reported that 90.3% of CFRI enrolees have at least one delta F508

allele, and such PWCF tend to have more severe disease.4 To put this into perspective, in addition to

having the highest incidence of CF in world, the most prevalent underlying mutation that causes this

disease in Ireland is also synonymous with more severe disease outcomes.

The Cost of Caring for a Child with Cystic Fibrosis and their Additional Care Requirements

This can be broken down into the following categories:

Loss of Income / Time off Work

Following the positive diagnosis of a child with CF, many parents decide to adapt their lives

substantially to care for their child. This commonly involves the transition of one parent ceasing full-

time employment to stay at home to care for their child, while others may reduce their working

hours to part-time. As one member said, ‘although the Domiciliary Care Allowance does not replace

our lost income, it helps to ensure that our son can get access to the services he needs.’

4 Cystic Fibrosis Registry of Ireland (CFRI) Annual Report 2010. www.cfri.ie/docs/annual_reports/CFRI2010.pdf

1. The objectives or purpose of this scheme

According to another parent, ’I had to go on a 3 day week so I can care for her at home as much as I

can which means I had to take a 20% pay-cut. The DCA enabled me to do this – it is so important for

me and my family.’’

Another member wrote ‘I was able to go part-time in work because of the Domiciliary Care

Allowance...my job is flexible and lets me work around physiotherapy twice daily, sometimes more on

sick days, and hospital visit, as long as I put in the hours. If the domiciliary was taken away from me I

would not be able to manage and would need to go back to work full-time so I am not sure then how

I would cope with hospital visits and physio sessions. It’s very worrying.’

During a long-term hospital admission or periods of exacerbation, many members who are in

employment report the necessity to take time off work to care for their sick child. This loss of

income can be compensated for through the Domiciliary Care Allowance and means the family can

pay the bills, buy food and other necessary items.

Depending on the family support available, long-term hospital admissions may also result in a

babysitter being required to mind the other children in the family. The DCA enables them to do this.

Taking time off work on an regular basis may also have negative implications on parental career

development/sustained employment.

Physiotherapy

Children with Cystic Fibrosis must undergo daily sessions of chest physiotherapy in order remove a

build-up of mucus in the lungs and to prevent infection. The number of daily physiotherapy sessions

is generally two, but this can increase during times of infection to three or even four. As one

member commented ‘To put it bluntly, a physiotherapist charges an average of €50 per half hour

session. We carry out 14 sessions weekly (64 per month), which would cost €3,200 per month, just for

this one task that we must complete every day. By not carrying out this task we are putting our

child’s life in danger and ensuring that he would have to stay in hospital for extended stays, costing

the state much more.’

The availability of suitably qualified respiratory physiotherapists is very limited in the community setting. In situations where both parents are working, or during times of exacerbation, it would not be uncommon for parents who live long distances from the CF Centre, and where such support is not available to them through the community physiotherapist, to employ a physiotherapist in private practice to treat their child. This can be very costly as was outlined above. The benefits of physical exercise are also well documented for people with cystic fibrosis and have been shown to have a positive effect on exercise capacity, strength and lung function for this patient group.5 For this reason it is integrated into the physiotherapy regimes for many people with CF, with encouragement from CFAI and the CF Physiotherapist. The cost of these activities, for example, purchasing a trampoline, swimming lessons, football club fees, are ongoing and put further financial pressure on families in order to ensure the best possible outcome for their children. 5 Bradley JM, Moran F. Physical training for cystic fibrosis. Cochrane Database of Systematic Reviews 2008,

Issue 1. Art. No.: CD002768.

High-Calorie, High Protein Diet

Most children with CF are unable to digest and absorb adequate nutrients from food. For this

reason, their parents must ensure they take pancreatic enzymes with food and vitamin supplements

to ensure they are getting adequate nutrition. They also require extra effort to breathe and use

more energy while coughing and fighting infections. As a result, people with CF need a special high

fat, protein and calorie diet.

According to one member, ‘Bills have become higher since my daughter’s diagnosis. She struggles to

put on weight because of her illness so we have to spend more money on food for her.’

The additional cost incurred to a family as a result of these diet requirements is estimated to be in

the region of €30 / week.

Travel Costs

People with CF need to attend their CF Centre on numerous occasions throughout the year for:

Annual assessments

Routine clinic appointments

Admissions (can last 2-3 weeks) during exacerbations

Reviews and meetings with individual multidisciplinary team members (physiotherapist, dietitian, psychologisy, social worker)

Surgeries (e.g., PEG and Port insertions) that cannot be carried out in some hospitals at a regional level

The petrol and parking expenses for families during these visits are substantial and place huge

financial strain on an already limited income. The costs associated with in-patient stays place even

further pressure on families at a time when there is huge emotional upset.

Note: Public transport is not a preferable means of transport for people with CF because of the risk

of cross-infection.

GP Visits

For members who are not in receipt of the Medical Card or GP Visit card, the cost of visiting their GP

is approximately €50. An additional cost will also be incurred to these individuals when getting the

flu vaccination.

Other Costs

Increased ESB/fuel bills/telephone (to the CF Centre, the chemist of the CFAI). Family respite once a year Providing support mechanisms to compensate for frequent absences from school, e.g., home

tuition/grinds.

It is also important to point out that many people in receipt of DCA do not qualify for the Carer’s

Allowance, are not in a position to return to full-time employment because of the extra

requirements of their children. The DCA provides essential financial support to enable

parents/caregivers to continue to manage their child's disease

The Domiciliary Care Allowance should be considered as an enabling measure to reduce the

potential need for hospital admissions, thereby reducing the cost the overall cost to the State (See

Annex 1).

The cost of disability has been estimated at a third of average weekly income.6 It is difficult to

estimate the actual overall cost incurred to a family as a result of caring for a child with Cystic

Fibrosis as some children may have more aggressive symptoms than others. However, we hope that

the information above will help convey the complexities of this disease and provide a picture of

what is involved for parents in caring for a child with CF.

2. The application and assessment process

For example

How can this be made more user-friendly

Should eligibility be assessed based on the child’s diagnosis; the level of care and

support needs; the additional costs for families; or other factors?

What documentation/reports should support a claim

What professionals should validate a claim

Should assessments for other services be used to support a DCA claim

Your Submission:

Cystic Fibrosis is a genetically inherited disease that becomes progressively more severe with age.

There is no cure for CF. While survival ages are slowly increasing in Ireland, the median age of death

of people with Cystic Fibrosis is just 25 years of age.7

When a child is diagnosed with this life-long condition they are referred to a specialist CF Centre

where a multidisciplinary team of healthcare professionals, led by the CF Consultant, will manage

the individual treatment program of their condition. The child will regularly attend this centre for

routine clinic appointments and annual assessments as well as during exacerbations when admission

as an inpatient may be necessary for more aggressive treatment.

6 Cullinan, J., Gannon, B. and Lyons, S. (2010), ‘Estimating the Extra Cost of Living for People with Disabilities’,

Health Economics.

7 Cystic Fibrosis Registry of Ireland (CFRI) Annual Report 2010.

http://www.cfri.ie/docs/annual_reports/CFRI2010.pdf

Since July 2011 all newborn babies in Ireland are now screened for Cystic Fibrosis as part of the

existing newborn bloodspot programme. We contend that once a positive diagnosis is made through

this programme or by a Cystic Fibrosis Consultant (for children born before July 2011), eligibility

should be automatically granted and no further assessments should be required. This could be

communicated to the Department through a letter confirming the diagnosis of the child and thus

should be sufficient to assess eligibility to this scheme.

Following a diagnosis, parents have a lot to deal with emotionally as they come to terms with the

impact the diagnosis will have on the family. Parents have reported that convoluted application

processes to be ‘both upsetting and demeaning’. We would ask the Department to be cognisant of

these issues if revaluating the application process in order to allow families to access the relevant

supports in a way that will not cause further undue anxiety and stress.

Because CF is a chronic condition that impacts primarily on the internal organs, there has been a

tendency in the past for our patient’s conditions to be sometimes judged on superficial appearance

or examination by Medical Assessors. We would urge that this tendency should not reappear. It is

important that Medical Assessors therefore have a thorough understanding of the disability and the

impact that this will have on the family from medical, emotional and financial perspectives.

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. Combined with the fact

that it is genetically inherited, CFAI would argue the point that following a positive diagnosis of this

disease, Cystic Fibrosis is a condition that should be automatically recognised for inclusion in this

scheme.

3. How decisions are reached and communicated

For example

What ways can communication with parents be improved

How can the basis for decisions be made more transparent

How can decisions be better communicated

What level of detail should be included in communicating a decision

Your Submission:

The Department should make a decision on each application as quickly as possible as the outcome of

this application can influence access to other supports such as the Carer‘s Allowance and the Respite

Care Grant. Members have reported their upset at receiving a letter from the Department without

any prior dialogue with a liaison/representative about their particular case.

The basis for a decision should be provided and The Deciding Officer should be named. A contact

person in the Department should be appointed to discuss any queries about the application and

parents should be afforded the opportunity to request more information about the decision should

they wish. Instructions should be made very clear to families about the appeal process in the event

that they disagree with the outcome of the application.

A means to be able to track the progress of each application online would be of assistance to

families. As most people now have mobile phones, perhaps this is also a means to communicate

information about the application process.

4. How individual cases are reviewed

For example

How often should cases be reviewed

What should trigger a review

When should cases be marked ‘do not review again’

What should be the format of the review process

How can the review process be made more user-friendly

What documentation/reports should support a review

What qualifications should those conducting reviews have

Your Submission:

As previously mentioned, Cystic Fibrosis is a genetically inherited disease that is progressive in

nature. Following confirmation of the initial diagnosis we would argue that no further reviews or

follow-up assessments should be necessary since Cystic Fibrosis is a life-long condition that is

incurable. The DCA should be automatically given to the family of a child with Cystic Fibrosis until the

time the child reaches the age of transfer onto another scheme (i.e., Disability Allowance).

The only scenarios where an eligibility review of a person with Cystic Fibrosis should take place is if

there were a change in diagnosis of the patient or in the event that a significant medical

breakthrough could reverse the underlying genetic cause of the disease.

5. Should the rate of payment reflect the level of disability/care need of the child

For example

If you think there should be different rates, on what basis

Should the rate of payment be related to degree of disability

Should the rate of payment be related to degree of care required

Should there be different rates at different ages?

Should the payment be phased differently over the year?

Your submission:

It would be a difficult task to grade the level of payment according to the level of disability.

With regards to our members, we would argue that the level paid at the moment is the absolute

minimum basic rate for a family caring for a child with Cystic Fibrosis. As a child with CF grows, their

condition will deteriorate over time so it is likely that this will put further financial strain on families.

As you can see from the information provided in Question 1, the actual additional costs of caring for

a child with Cystic Fibrosis far exceeds the current rate of payment, which works out at

approximately €10/day. Families are struggling to cover the additional costs involved in caring for

their children – further cuts would have a detrimental outcome on their ability to continue to do so.

The Department may consider allowing additional increments to the standard basic rate should a

certain disability fall into the category of exceptional care requirements.

6. How the appeals process operates

For example:

How can the appeals process be made more user-friendly

What should be the timeframe for appeals

Where should appeals take place

What documentation should be required to support an appeal?

Your Submission:

For children with Cystic Fibrosis, we believe that the DCA should be issued once a positive diagnosis

is made. The appeal process should therefore not apply to this patient group.

In the unlikely event that an appeal must be made,

A personal account from the family of day to day life with a child with a disability. A

detailed medical explanation of the disability from a specialist doctor of that disability. A

detailed explanation of how the disability affects the disabled person and the effects on

the family. If family feels a meeting is needed to explain their case it should be granted

on appeals.

7. Suggestions for any changes to the operation of the scheme

Give any other changes you would suggest to the scheme, and why

Your Submission:

We would encourage the Department to engage with representative organisations such as the CFAI

to gain a more thorough understanding of the economic and social burden imposed on our

members.

In cases where families have more than one child with Cystic Fibrosis, supports in addition to

domiciliary allowance should be forthcoming. The Respite Care Grant is a much valued associated

benefit of the DCA and we strongly urge that it not be cut.

With regards to the proposed changes to increase the age criteria for the DA and DCA from 16 to 18,

we would ask the Department to consider the following point:

There are several secondary benefits attached to the DA, including free travel and in

some cases rent allowance and the household benefits package.

In order to avail of the Back to Education Allowance, an individual would need to be in

receipt of the DA for 3 months (for second level courses) or 9 months (for third-level

courses) immediately before starting a course and applying for this allowance. If the age

of eligibility for the DA was increased to 18, and a person started college at the age of 17

years of age, access to this Allowance would be hindered by the eligibility criteria for this

scheme.

The DCA payment currently amounts to €3,714 per year. The DA payment (max rate) is

€9,776. The difference is €6,062. The DA is regarded as an excellent means to promote

independence and financial security for young people with cystic fibrosis in these

formative years when they may also be transitioning from paediatric to adult services.

Please do not hesitate to contact CFAI should you wish to discuss any issues raised in this

submission.

Appendix 1.

The Cost of Caring for a Person with CF

As was reported in the CFAI Pollock Report in 2005, ‘Towards a Better Service - Treatment of Cystic

Fibrosis in Ireland’8, a banding evaluation method used in the UK9 illustrates clearly the relationship

between the cost of care (medication, in-patient and out-patient services) and the health of patients

(these costs were assumed to be in-line with those in Ireland at the time). For example, it shows that

it costs ten times less to provide care for people with mild symptoms (€5,500) than it does for

people with moderate symptoms (€59,000) – (note these figures represent rates at 2004/5 and so

have likely increased due to inflation). Generally speaking, children would fall into this ‘mild’

category and adults would encompass the ‘moderate’ or even ‘severe’ category.

It can therefore be assumed that patients with moderate and severe disease have significantly

higher direct costs than the relatively milder group. An argument can then be made for keeping

children with CF in this mild category of disease severity; we believe that the Domiciliary Care

Allowance is instrumental in this respect as it allows parents to provide the level of care required to

keep their children in this category for longer. As one member commented ‘Without it, I fear that my

child’s health would deteriorate and this will lead to him needing to spend more time at hospital,

thus causing further strain on the HSE, and also on the family.’

The CFRI Annual Report from 2010 reported that 90.3% of CFRI enrolees have at least one delta F508

allele, and such PWCF tend to have more severe disease. To put this into perspective, in addition to

having the highest incidence of CF in world, the most prevalent underlying mutation that causes this

disease is also synonymous with more severe disease outcomes.

8 CFAI Pollock Report, 2005, ‘Towards a Better Service’: http://www.cfireland.ie/pdf/Pollock_Report.pdf

9 (Source: Cystic Fibrosis Trust (UK) The Clinical Care of Children and Adults with Cystic Fibrosis Bandings and

Associated Costings, 2004)