Seán Canney (Galway East, Independent) | Oireachtas source

I welcome the opportunity to speak and compliment those who brought forward this motion. As a member of the Committee on Disability Matters, I have been listening for two and a half years to a litany of complaints from service users with the lived experience of disabilities. They bare their souls in public before the committee. It is not pretty. The courage and determination they show is great but all we are giving them is just platitudes, telling them they are great and brave to do what they are doing. What is wrong is we have such a complex problem and a variety of issues that it is hard to know where to start and how to start. When the elephant is so big, how do we eat it when it is only one piece at a time. I know the Minister is working on that. Some things touch my heart. When a parent contacts me to say his or her child received an assessment and is attending a speech and language therapist but that therapist is going on maternity leave so the child is going back on the waiting list. That has to stop. I do not who is responsible for it but we need to be able to backfill places when people go on maternity leave, which they are quite entitled to do.

There is also an issue whereby clinicians do the paperwork but do not have the backup of administrative people to enable a bigger throughput of people through the system. These are simple operational things that need to be done.

I listened to the radio programme “Liveline” yesterday on my way to Dublin. I do not know who hosted it. On air was a mother who said she is afraid of dying, not because she fears death but because she fears for what will happen with her child when she passes away.

She said she will feel she has failed her child if she passes away and the problem is unsolved and he does not have a care plan. It is damning that a mother is living like that and is afraid she has failed her child and he will not be taken care of when she passes away.

I received a phone call this morning from the elderly parents of a constituent who has Down's syndrome and several other issues. The parents are in their 70s. They are getting three hours a week home care for a 47-year-old man who has multiple problems, including sight issues, epilepsy and other matters. That is not right in this day and age.

The committee discussed previously the cost of a disability and the cost of living with a disability. Yesterday, the Taoiseach was talking about what he will put into the budget. My ask of the Minister of State, Deputy Rabbitte, and the Minister, Deputy O'Gorman, who are present, is for a disability allowance that will include additional moneys for people with a disability to meet the additional cost of living they have. I will bring pressure to bear in seeking that. This is not about the regular cost of living; it is about the cost of living with a disability. I hope that, through the Oireachtas Joint Committee on Disability Matters and the Department, we will be able to put in place a scheme that will start this year to get that budget going over a number of years. The Indecon report states that the additional cost of living with a disability is in excess of €9,000.

A few weeks ago, the Regional Group tabled a motion on transport costs and supports for people with disabilities. Work is being done on that issue but Peter Tyndall highlighted it as urgent in his report, Grounded - Unequal Access for People with Disabilities to Personal Transport Schemes, and that report was published three years ago. The State dispensed with transport schemes more than ten or 12 years ago and they have not been replaced. That is a shame on us all.

I refer to the report published by FUSS Ireland and based on surveys it carried out. It found that 80% of respondents believe the PDS model and reconfiguration of services has failed. These are people with lived experience. Of the respondents, 72% believed there was a lack of accountability on behalf of HSE management. Disability services were described as disjointed, diluted and clinically unsafe for staff and users. A call for specialists and cohesive interagency working echoes throughout the replies. The report contains direct quotes from staff and service users. I understand the Minister, Deputy O'Gorman, and the Minister of State, Deputy Rabbitte, have met with FUSS Ireland to discuss the report. It is from people who have experience of this issue. It was not produced by analysts at computers or whatever. These are people who are living with this issue. One respondent stated, "Literally nobody tells me as the parent a thing I’m having to fish information out and mostly getting help from other parents." When parents find out their child has been assessed and has a condition, it takes them a lot of time to come to terms with that fact. They have to look after their other children, if they have any, and keep life normal at the same time as they face all of the anxiousness relating to trying to get services for their child. They do not know where to go or what to do. The penal thing is the time they are left waiting without a response. They are not told anything but, rather, are left in a haze. That is when people come to us, as public representatives. They are frustrated. They break down in the constituency offices of Deputies throughout the country. They are upset because there is no proper plan or pathway. People whose children go for an assessment should be assigned case workers whom they can contact if they have any queries, recognising that their children are the most important thing to them. That is lacking in the system. Children are precious and everything possible needs to be done to ensure they get the best possible treatment while they are under the care of the services. I encourage the Ministers to take that on board.

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