When I go in a front door and see Designated Centre/Health and Safety/Mission Statement notices on the wall, I don’t feel reassured. I feel I’m in an institution. The place for such things is the manager’s office. The test of a residential service is the quality of relationships between people living and working there.
Like many parents from the intellectual disability area, I welcomed the coming of HIQA. I thought it would provide useful oversight of services, safeguard people’s rights and provide an independent arbiter for complaints. What I didn’t foresee was another blanket of bureaucracy. Although my daughter is now beyond services, in her lifetime I had 25 years’ experience of them and believe they are best when small, open and informal. While a certain level of record-keeping is necessary, its contribution to service quality is limited. Even a short stay in hospital showed me how irritating it was to be ignored in favour of the ’notes’. How much more damaging for someone who spends every day in a centre!
When I go in a front door and see Designated Centre/Health and Safety/Mission Statement notices on the wall, I don’t feel reassured. I feel I’m in an institution. The place for such things is the manager’s office. The test of a residential service is the quality of relationships between people living and working there. I have read HIQA reports where one sentence adverts to the good relationship between clients and staff, while several pages document holes in the HIQA-mandated procedures. The question in my mind and that of other parents is: did HIQA miss the atmosphere in Áras Attracta by paying too much attention to tick-boxes?
The HSE and Department of Health reports talk a lot about new models of service, greater autonomy and participation in the community. My eyes glaze over when I read these clichés, not because there’s anything wrong with them as aspirations, but because they have become a cloak to conceal a lack of action on the most difficult problem in the intellectual disability sector: how to provide a service for people with very significant/multiple disabilities when their parents die or become too frail to care. There are different ways of doing this–some better than others–but all of them are expensive. And parents don’t die or get sick in a planned or designated way; though when a lot of them are over 70, foreseeing a number of emergencies each year hardly requires a planning degree.
In parenthesis, most people with intellectual disability don’t have such high needs–as long as they get the supported housing, the day activities and the back-up services immediately they require them. And that means somebody to assess changing needs, organise staff etc. It’s not a no-hands operation.
HIQA wants to be notified of all changes in disability services in advance and for these to take place in an orderly fashion. Good idea–if services were properly resourced to begin with. But in present circumstances where residential services are stretched to their limit, what can they do when a parent dies inconveniently, when a client breaks a leg and cannot use their ‘designated’ bedroom, when the sudden challenging behaviour of one client threatens the safety of others? In the normal world (remember normalisation?) people improvise temporary solutions–put the bed in the sitting room, install a chair-lift, persuade family members to double up or move to granny’s. But HIQA regulations don’t hold with that sort of thing. You can’t use the next door day-centre temporarily, if it hasn’t been designated, or have someone sleep in the sitting room. One suggested HIQA solution was apparently to return the client to the HSE–in a worst-case scenario to a hospital emergency room. And what happens then? The person is suddenly decanted to an unfamiliar service. How person-centred is that? Is there an understanding of the level of distress this causes–and the level of anxiety unleashed among parents by such suggestions?
The voluntary providers have not got a good press recently; but they are the mainstay of the disability sector; when they’re good, they provide continuity, motivated staff and a commitment to the person. Now they are caught in the pincer grip of the HSE and HIQA. Because of its ongoing deficit, the HSE’s main concern appears to be saving money. The Service Level Agreements (SLAs) it imposes on voluntary providers come close to demanding the impossible: complete responsibility for a growing and often ageing population with ID, with whatever annual funding the HSE decides, and with reduced staff numbers. HIQA, having consulted on and published its apparently user-friendly Residential Standards for Disability Services, then brought in different statutory regulations based on the Nursing Home ones. There is no guidance on priorities; although, if I were in a service, I’d put staff kindness, freedom from abuse, decent food and health care way before care-plans or building designation.
At present the demands of the two state agencies seem incompatible and the struggle between them is being played out at the level of services, sometimes to the detriment of clients. When standards were first mooted, an incremental approach was suggested–with priority standards introduced at once and others over a period of years. HIQA needs to consult with the HSE over the costs of what it mandates–in terms of money and staff. And one thing it does need to do is to accept individual complaints.