It seems that respite care is throwing off its Cinderella rags at last and becoming a real service; there’s a lot more money around for it. One of the first signs of change is dissatisfaction with the name–a bit medical, a bit utilitarian–so if you can think of a rosier name for respite you may be in business!
Whatever its future name, it’s great to see respite recognised as an essential service. Twenty-five years ago it didn’t exist as a category, it belonged in special-favour-land. Your service might run a six-day holiday camp, or your social worker might get your child into a residential unit or children’s hospital for a week, by representing you as a dire case. The social worker didn’t publicise it–she was afraid of being inundated by demand–and you didn’t ask questions like: Why six days and not seven, so you could take advantage of holiday offers? or Why did your child have to use cloth nappies in Hospital X?
Early this summer St Michael’s House held a consultation morning with parents on the topic of real and ideal respite services. It was encouraging to see staff taking careful note of people’s wishes; and it was also encouraging to hear people speaking of respite as a right. ‘Everyone else gets a month’s holidays every year,’ one mother said. ‘Why not us?’
Them’s fighting words in the context of how Irish society treats its carers. Parents wanted respite to be available at the end of a phone when they wanted it. None of this palaver of going to Miss X and Mr Y and proving how needy you were, or how long it was since your last break… (Bless me, father!)
What annoyed parents most about the present respite services was their unpredictability. Almost worse than not getting respite at all was getting it in a way that meant you couldn’t properly use it. If you book a holiday, you can’t be 100% sure of a respite place even if your social worker has reserved it. Someone needier than you may happen along at the last minute. Alternately you may be offered the bank holiday weekend the day before. Some of us are able to drop everything and jump on a plane in such circumstances; but a lot of us have other things to organise as well: work, other children. Planned breaks were something all the groups saw as a priority, and most felt that anything less than a week was too short for a proper holiday.
Of course, St Michael’s House and other providers didn’t set up respite this way out of sheer cussedness. If someone’s mother or father dies or goes into hospital, that person has to get a place somewhere immediately. The somewhere is usually respite. The problem is that this service covers two different types of situation: regular breaks for people living with their families, and emergency residential care. Until the two services are funded–and possibly catered for–separately, families will continue to be short-changed.
St Michael’s House staff described the different types of respite:; the most well-known, the special houses which cater only for respite guests; Homechoice and Breakaway where the person is matched with a family in a fostering-type situation; another family-based scheme, Adult Choice, where people with some training look after different disabled people; and the planned use of day-centres on some nights for particular groups.
Respite has two clients–the family/carer and the person with disabilities. At its most basic it provides the break which allows the carer to recharge batteries and continue caring. But it also has to cater for the disabled person by providing a suitable grouping and some activities. (It must be an organiser’s nightmare!) As people are offered more respite, they get fussier about quality. And quality depends much less on the number of showers or the state of the kitchen floor than on the disabled person’s contentment. Does he or she come home happy or cranky? For people with severe disabilities, respite needs to be familiar and predictable. Going to several different houses with different staff and clients can be upsetting and disorienting–and while parents may accept such conditions for an annual holiday, they will be less likely to use such a service regularly. Respite is also a transition experience for people with disabilities. It is as essential for them to discover that they can survive–and have a good time–in new circumstances and with different carers as it is for their parents to get a break. Nobody knows when full-time residential care may be needed.
In an ideal world, what sort of respite would I like? Well, for the last few years I have been very lucky: Aoife has had a Homechoice family who have taken her regularly and reliably. She recognises them, is happy to go there and they can give her experiences I can’t. Occasionally I have got mainstream respite as well. I’d like that situation to continue; I’d also like her day-service to organise monthly or fortnightly sleepovers in her unit, so that I would have more time off, and she would be looked after in familiar surroundings. Most of all, I’d like a certain amount of money allocated to her/us for respite, ring-fenced against other priorities. The health boards already allocate a small respite grant annually to those receiving Carer’s Allowance. Like most people who have lived through bad times, and have seen my essentials cut back in the interests of someone’s idea of fiscal rectitude, I’m big into guarantees and parental control.