A TIME TO ENGAGE

by Stephen Kealy, Editor, Frontline.

Stephen Kealy
Quality of Life is based on people’s rights but enough money needs to be provided to realise this goal.
People with disability are not always supported to speak up about poor service.
Funding cuts are affecting service-users, staff, services and families.
Our leaders need to be on the ball to make Quality of Life a reaistic goal.

Consumer protection is valued by any person purchasing a product or service, and the supporting legislation is robust. Essentially, consumer legislation is there to protect the public from shoddy goods, services and practices. Manufacturers of goods and many providers of services endeavour to provide something that others will recommend, not only for the value offered but also for the quality. Yet to equate Quality of Life with consumer protection is trite. Quality of Life has to be rooted in rights, the reciprocal sort – rights for the person, rights for the people providing services. But rights become aspirational if there are insufficient financial resources for implementation.

In our schools, time is taken through the Stay Safe Programme to inform children about the need for self-protection – to be alert to bullying, and sexual predatory behaviour – essentially providing tools necessary for self-protection and expression. The implementation of the programme is calibrated to each child’s level of understanding. However, disabilty services have no similar, equally calibrated, national programme. If they had – is there a greater possibility that people with intellectual disabilities would be empowered to speak up more often for themselves in cases of questionable practices or poor service? The absence of such programmes is illustrative of undervaluing people with intellectual disabilities.

At the recent Inclusion Ireland Annual General Meeting, some parents identified difficulty in getting services to engage with them in a constructive and responsive manner. Indeed, some of the reported responses suggested an extraordinary mismatch between what was stated on the tin and the actual experiences of parents and extended family members. Some family members, unbelievably, in this day and age, expressed a concern that if they challenged the service they might be requested to remove their son or daughter. The questions asked at that meeting raise the issue as to whether there is a shared understanding among service providers of rights-based legislation and the balancing of rights with protection, independence and self-empowerment. However, of crucial importance in this equation is the continued under-resourcing of our intellectual disability services. Is it that the HSE expects providers to do more for less to the extent that insufficient attention is sometimes paid to the incidence and prevalence of intellectual disabilities throughout the country?

Disability services are exactly that – a service to the person and their family members, and yet the amount of ‘consumer protection’ to ensure a “quality mark” is in fact wanting. Again, a factor which cannot be ignored, is the serious funding shortcomings over the last few years. It is difficult to operationalise an individualised programme for and on behalf of people with an intellectual disability if there is little designated money to implement it. A further downside of this is that staff can become demoralised, unmotivated, and indeed disillusioned. Congregated settings may absorb a lot of money but community-based services may not necessarily cost less if you want to meet those hallmarks of a quality, inclusive and integrated service.

HIQA, following planned and unplanned visits to designated centres, has not only uncovered poor practice but also serious shortcomings signalling questionable Quality of Life outcomes. HIQA inspections do not necessarily address Quality of Life measures. If a HIQA inspection is structural, administrative and process-oriented, then those Quality of Life hallmarks – relationship, reciprocal respect, and self-empowerment may not be adequately engaged. Frontline staff are ‘trained’. However, training of itself does not necessarily lead to a quality service, if there is a culture, sometime pervasive, which has limited understanding of the rights of people with intellectual disabilities.

The provision of a quality of service that meets all those Quality of Life hallmarks depends on the leadership and the culture of the service. If leaders do not know each nook and cranny of their service, then cultural silos can flourish. Moving people from a congregated setting to the community is unlikely to bring significant change in a person’s life if the cultural framework from the congregated setting also travels to the community. The embedded culture has to become can do – overcoming obstacles, making things happen, pushing the boundaries. Yes, HIQA’s remit is to be the Quality watchdog for disability services, but in its first stages some service providers may perceive it as emasculation rather than an opportunity to give the best possible service.

No regulatory body, no matter how vigilant, can make people behave respectfully to people in their care, nor indeed can any amount of training, if the culture of the organisation does not have zero tolerance for staff behaviour that minimises engagement or ignores the human rights of people with intellectual disabilities. However, it is difficult for staff to actively engage if the financial resource is spread so thin that going the extra mile is just not possible without extra resources.

Quality of Life flourishes in a culture of support where reciprocal respect is fostered in the sprit of self-empowerment for people with intellectual disabilities. But staff have also to be empowered to realise the possible. The environment should support their rights, not only through adequate financial resources, but also by ensuring that staff embargoes do not prevent the implementation of decent accommodation, food, and appropriate & individualised care standards. If basic rights are not seen as a priority, then an approach to having “rights-based services” becomes just a platitude.

Quality of Life is so important for psychological wellbeing – yet it is often elusive for people with intellectual disabilities, and indeed for many people without a disability.

Quality of Life is achievable for people generally, if adequate funding for long-term improvement is available.

For people with intellectual disabilities, Quality of Life is more easily achieved in an environment where leadership, rich in imagination and the understanding of the possible, is in place, not only from service providers but also from the Minister responsible for intellectual disability services.

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