Victims of a haphazard service run on the basis of charity and goodwill

IN her feature article (September 4), Deirdre Carroll of Inclusion Ireland highlights the State’s neglect of people with intellectual disabilities.

She calls for urgent implementation of independent inspection of residential and respite services in order to guarantee that no more children or adults with disabilities are physically or emotionally abused while in care.

While I thoroughly agree with Deirdre Carroll, I would argue that we need more than inspections in order to change the service provision for people with intellectual disabilities.

As a parent of an adolescent son with a mild intellectual disability I have just finished a 10-year-long battle with our service provider.

I lost because they could not steer away from their staff-centred policies and implement a genuine partnership with us, his family.

The HSE, which generously funded the haphazard service, prolonged our agony with bureaucratic delays and ultimately refused to let us tailor a service that would meet our son’s needs and would also be much more cost efficient.

The HSE failed to recognise the knowledge and expertise that we as parents could contribute in order to save taxpayers’ money.

As a consequence we were left with a service that was highly unsuitable and even psychologically damaging to our son.

After waiting patiently for 10 years, hoping that the HSE and the service provider would finally listen to what we had to say, we decided to turn to the children’s ombudsman before our son became an adult. However, we were told that we first had to complain officially to the HSE. We did so early in the summer and received a booklet with information regarding the process and the timeframe within which the relevant authorities should reply – 30 working days.

This was three months ago and we have heard nothing yet. It appears no one is accountable because no one has to be accountable to people with disabilities and their families.

Fast forward 40 years and our son faces the risks of being in the same position as the man Deirdre Carroll described in her article.

Independent inspections will of course be one step in the right direction, but even this little step seems too huge for politicians and policymakers to take.

As long as services are run on the basis of goodwill and charity people with intellectual disabilities will remain victims deprived of human rights.

Anna Kingston

Knockalisheen

Togher

Cork