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Parents fear son will miss hospital appointments as they can't afford to replace van

Margaret Butler and Michael Power have called for more financial support to be given to carers.

Alex
Alex
Image: Michael Power

MARGARET BUTLER AND Michael Power are dealing with a situation many carers in Ireland are facing: struggling to keep a vehicle on the road.

Their five-year-old son Alex has severe cerebral palsy, epilepsy, sleep apnoea, cerebral visual impairment and is fed through a tube.

Cerebral palsy is a term used to refer to a group of conditions that affect movement and posture because of damage to or failure in the development of the part of the brain that controls movement.

Special Education Support Service notes that this can happens before birth, during birth or during early childhood before the brain’s growth has reached a certain level of maturity.

The couple bought a wheelchair-accessible van two years ago, a 2008 Renault Trafic, at a cost of €15,000. They took out a credit union loan to buy it and are still making repayments.

Between hospital appointments and school runs, they’ve clocked up over 170,000 miles (about 273,000 km) since 2014.

Michael says the van is on “its last legs” and they can’t afford another one if it breaks down.

The couple live with Alex and their four other children, aged five to 15, in Ballintogher, Killenaule, Co Tipperary. Alex goes to a special school in Clonmel and can have two to three hospital appointments each week, sometimes in Dublin.

Full-time care

Margaret is a full-time carer for Alex. A nurse comes to their house two nights a week but Margaret cares for him around-the-clock apart from this.

She says the €5 increase in the carer’s allowance announced in the Budget was “an insult”, noting it “wouldn’t cover a car parking cost”.

The couple say they get about €1,200 a year under the Disabled Drivers and Disabled Passengers Scheme operated by the Revenue Commissioners. This goes towards petrol and motor tax.

image Source: Michael Power

Michael had work with a Community Employment scheme earlier this year, but is currently unemployed. He is having difficulty getting a job, saying there are not many options in the area.

“I need to stay local to help mind the children, and need to have flexibility to be able to go to hospital appointments.

“This is putting us under huge financial pressure and I know of lots of other families in the same situation. We still have another four years left to pay off on the car loan and if the car gives up in the meantime we simply won’t be able to replace it.

Alex cannot travel in an ordinary car so this will mean huge difficulty getting him to and from hospital appointments, therapies and school. I really think the whole system needs to be looked at and that families in these situations should be given some form of financial assistance.

Margaret says: “Add a special needs tag to anything and the price just goes up – it was €15,000 for the car and it’s a few years old. If it wasn’t adapted it would cost half of that.

“The car is not in great shape. I’m praying it will keep going. There are so many miles on it. I honestly don’t know what we’ll do if anything happens to the car. I don’t want to think about it.”

Despite this, Margaret says her family are lucky because they have a van in the first place, noting lots of families with a member with special needs can’t afford a car at all.

Mobility allowance 

A spokesperson told TheJournal.ie the Department of Health doesn’t provide any financial support towards the purchase of wheelchair-accessible vehicles.

11/5/2016 Cabinet Meetings Junior Minister Finian McGrath Source: Sam Boal/RollingNews.ie

In a statement they noted that the Mobility Allowance and Motorised Transport Grant schemes were closed in February 2013, in light of reports of the Ombudsman regarding their legal status in the context of the Equal Status Acts.

However, the Department is aware of the continuing needs of people with a disability who rely on individual payments which support choice and independence. In that regard, monthly payments of €208.50 have continued to be made by the Health Service Executive to 4,700 people who were in receipt of the Mobility Allowance at the time the scheme closed.

“Work is underway on the development of a new Transport Support Scheme and associated statutory provisions. The Programme for Partnership Government recognises the ongoing drafting of primary legislation for this scheme and work on policy proposals in this regard is at an advanced stage.”

Minister of State for Disability Issues Finian McGrath echoed these comments when discussing the issue in the Seanad last month.

Disabled passengers scheme 

Finance Minister Michael Noonan discussed Disabled Drivers and Disabled Passengers Scheme in the Dáil earlier this month, describing it as “a significant tax expenditure”.

To qualify for the scheme an applicant must be in possession of a Primary Medical Certificate. To qualify for this, an applicant must be permanently and severely disabled and satisfy one of the following conditions:

  • Be wholly or almost wholly without the use of both legs
  • Be wholly without the use of one leg and almost wholly without the use of the other leg such that the applicant is severely restricted as to movement of the lower limbs
  • Be without both hands or without both arms
  • Be without one or both legs
  • Be wholly or almost wholly without the use of both hands or arms and wholly or almost wholly without the use of one leg
  • Have the medical condition of dwarfism and have serious difficulties of movement of the lower limbs

12/10/1026. Minister Michael Noonan after he meet Finance Minister Michael Noonan Source: RollingNews.ie

Noonan stated: “Between the Vehicle Registration Tax and VAT foregone, and the repayment of excise on fuel used by members of the scheme, the scheme represented a cost of €50.3 million to the Exchequer in 2015, an increase from €48.6 million in 2014. These figures do not include the revenue foregone to the Local Government Fund in the respect of the relief from Motor Tax provided to members of the scheme.

I recognise the important role that the scheme plays in expanding the mobility of citizens with disabilities. I have managed to maintain the relief at current levels throughout the crisis despite the requirement for significant fiscal consolidation. From time to time I receive representations from individuals who feel they would benefit from the scheme but do not qualify under the six criteria.

“While I have sympathy for these cases, given the scale and scope of the scheme, I have no plans to expand the medical criteria beyond the six currently provided for in the Disabled Drivers and Disabled Passengers (Tax Concessions) Regulations 1994,” Noonan added.

More details on the scheme can be read here.

Speaking to the Oireachtas Committee on Public Service Oversight and Petitions in September 2015, Jim Breslin, the then Secretary General at the Department of Health, noted that the maximum motorised transport grant had been €5,020, payable once to an individual in any three-year period.

In recent years, more than 300 people received the grant each year, at an estimated cost of €1.3 million per annum … The Government decided to close the motorised transport grant scheme in February 2013 and no further grants have been payable since that date.

Michael says these grants were discontinued before his family needed them.

Update: Alex’s family have now set up a GoFundMe page. To donate, click here

Read: ‘There’s no prospect of my brother improving, he can’t be moved into community living’

Read: Mother fears son won’t get respite care until she dies

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About the author:

Órla Ryan

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