Severe autism family support
Deputy Fitzmaurice described a family coping with a severely autistic, non-verbal child whose care needs are overwhelming and asked for better support. The Tánaiste said he could not discuss the individual case but agreed severe cases need the State as key provider and that disability services need a more coherent approach.
The Tánaiste speaks about Ireland having full employment, and about a surplus and a budget, but I ask that he spares a thought for a father with whom we have been dealing over the last nine or ten months. Unfortunately, some children with autism, including his child, are non-verbal. His two other siblings are also living in the house. The child is under the adult age at 17 but is getting stronger. He takes food out of the fridge and pegs it on the floor. Some 20 T-shirts a week must be bought when a tantrum is thrown. He wrecks the mirrors of the car and he is incontinent. The father is trying to keep the family together.
We have got on to the HSE. Ironically, we are told that money is not a problem in these cases. The problem is that for children under adult age, there does not appear to be places for them or full-time residential care.
We have a lot of good stories to tell in this country but unfortunately those children are left behind. In this case, they were promised respite, and yes one night a week came. They were promised carers for five days a week but they never showed up. Given the way it treats young children with disabilities, is this the Ireland the Tánaiste envisages and is this the way the Government should be catering for them? Why over a number of years have we decimated residential care for those children under the adult age? Ironically, they have been told that if they can work it for the next ten months until the child reaches 18, they will be guaranteed a place.
I presume every other Deputy here, as I do, has a list as long as his or her arm of the fathers and mothers who, down through the years, have tried to help these adults for as long as they are able. However, when they look for residential care, it is not there. We have failed youngsters under the age of 18 and we do not have the places for the adults over 18 years of age. What is the Government going to do?
I will give the Tánaiste an example. I spoke to the Brothers of Charity the other day. If the Brothers of Charity decided to buy a house in the morning, there is no budget there. One must go through the council and a process. I was told it would take two years. That is what it would take for them to get a house because the council would own it. In many cases, where there were difficult cases, two or three children would be brought into a house and carers would be brought in. There is, however, no capital budget for the likes of the Brothers of Charity or organisations like that to buy a house quickly. It is a process one must go through and it is not working.
Comment on this
I thank Deputy Fitzmaurice for raising this issue. I do not have access to the individual case he raised but I do not doubt what he said. The experience the Deputy has articulated is not in any shape or form satisfactory in respect of that particular family or, indeed, for families in similar situations with what would appear to be a young child, young adult or teenager on the severe side of the autism spectrum. In many ways the trend over the last two decades has been to move away from residential care and the institutionalisation of young people generally in care. I have often thought that there needs to be modification of that in some respects. That has been a trend and decongregation is still happening, which has caused concerns in communities in respect of disabilities more generally. The professional view, with which I generally agree, has been that the more we can facilitate young people and children in the community, the better. There will be children and young people who will need residential care and families who will need respite care.
It seems that the critical issue is the recruitment of carers and professional people who can deal with children and young people who have a diagnosis of severe autism. How this has evolved is not optimal. The Deputy suggested the local authorities and the services combined would buy with the HSE. The provider could be the Brothers of Charity, as in this case, or some other provider but it could access or acquire a house, which can be done. Carers would then be recruited and it would become a residence for a number of individuals. I believe it needs something much more bespoke than that, in terms of the professional multidisciplinary teams required, so the person has a good quality of life. It is not just about securing accommodation, but the families do need respite. There are shortcomings in respect of respite and residential care. There is capital allocation and there is funding to enable this to happen. It should not take two years to acquire a house. I will talk to the Minister for Health. I do not know if the Deputy can give us the details of the case but his point is there are other cases as well and I believe other Deputies can raise cases also.
Even when people become adults, there are many emergency cases in families where, for example, the carer may pass away. Very often these become emergency cases for accommodation. They get resolved in an emergency context but with proper planning and co-ordination between the different services they could be resolved earlier with an earlier more co-ordinated approach between all the authorities and the services.
Comment on this
The Tánaiste is correct in saying that some people are able to live with a small bit of help, and that has tended to be what has happened over the last number of years, but what appears to have happened in this case is that the youngster has severe autism and is getting stronger, wrecking the house and breaking up cars. The father is looking after this child on his own and he cannot cater for him.
Let us consider what has happened in the overall context of this. We have fewer spaces for youngsters under adult age and we are now subbing the service out to private operators. From what I can see, having looked at this issue over the past seven or eight months, the private operators want cases but they do not want difficult cases. This child went to a private operator for a weekend but did not last a day. We pay the private operators big money. It seems to be a policy fault that we give private operators big money to try to sort this problem out but it is not working because they want the handy cases not the difficult cases. We must make sure we invest because those youngsters and their parents deserve to have a place. In this case, a single parent is looking after the child and it is wrecking their head. People break up.
Comment on this
I agree with the Deputy that the State should be the key provider in severe cases or cases that have complexity attached to them. That is one of the reasons, when coming into government, we wanted the disability brief moved to a different Department in order to get a more coherent and holistic approach to the issue of disability. It has taken too long given all the transfers that have happened. I do not want to place blame left, right or centre, but with everything the HSE is responsible for, this is an area that has not been comprehensively addressed. There was a time when we had annual plans and so on in terms of capital, residential respite, and providing supports without respite or residential, depending where people were on the spectrum.
Progress has been made on a number of fronts but in the context of severe cases, the Deputy is correct in saying that many operators will want the less complex cases. There is a gap and there is a problem.