Tuesday 12 November 2019

Simon Harris: Where's the choice for students with intellectual disabilities?

Funding is important but it is crucial we have a system that empowers those in need, says Simon Harris

WE need a much better system and real planning to cater for the needs of school leavers with intellectual disabilities.

As we enter the month of August, many families of people with intellectual disabilities who have just finished school are worried. Even more worried than usual. They don't know if their child be provided with an appropriate place in training, supported employment or day services.

Many more families in such situations have at this stage been offered a place and while this will come as a relief to them, the stress, frustration and lack of certainty they have had to endure for months in the run-up to this September is unimaginable.

There is no doubt that funding is an important element of this and that fact cannot be overlooked. But funding alone is not enough to address the needs of school leavers with intellectual disabilities. Remember even as the Celtic Tiger roared in this country, problems existed for children and adults with disabilities trying to access services and plan their futures with certainty.

Yes, we need to ensure adequate funding is in place for people with intellectual disabilities when they leave our school system and move on to the next stage of their life but we also need to do so much more.

We need to explore a whole range of areas around how funding is given to disability services. We need to ensure that funding is transparent. We need to make sure that proper planning is undertaken to guarantee that a young person with intellectual disability is not just given a "place" for the sake of place when they leave school but rather is given an appropriate placement that meets their needs and enables them to fulfil their potential.

At the moment, the State, through the HSE and other agencies, funds service providers to cater for the needs of people with disabilities. Many service providers do an excellent job -- but that is not the point. We need a system that empowers people with intellectual disabilities and their families to choose the service they want to choose. They need to be given the authority to choose where the funding for their service is directed.

This system of individualisation recognises the person with a disability as the priority of the State. It recognises their rights to make choices about their own life. It ensures that the public money follows the citizen in need of it.

It is a system used in many other countries

'Throwing money at structures without reform is only a sticking plaster'

and it is high time we looked at introducing the best elements of it here.

The Programme for Government commits to moving toward such a model and we now need to move forward with this.

This move towards personal budgets or individualisation of funding is an important step and would work even more effectively if coupled with other reforms including:

• Better planning for the transition from school to other services for people with intellectual disabilities -- this transition is a very important step and it should be planned for well in advance.

Structures need to be put in place to start looking at options for the future a number of years in advance of leaving school.

Families naturally do this already but they need to be supported by the State in this process.

• Establishing a Disability Directorate with the new health structures -- as the Government sets about dismantling the HSE, there is a huge opportunity to once and for all put in place a clear structure and funding mechanism around disability services.

We need to see a specific Disability Directorate within the new health structures with one person appointed as the head of that service. That individual should then be accountable for the spend of the disability budget.

• Putting National Standards for Residential Services for People with Disabilities on a statutory footing -- the Programme for Government commits to ensuring that standards for residential services for people with disabilities are on a statutory footing and that HIQA can carry out inspections in this regard. This is essential and is an absolute must.

There is an onus on all of us in politics to address these issues and I fully accept that funding must be provided but throwing money at structures without reforming them is only a sticking plaster.

Sticking plasters are important and necessary but at some point major surgery is needed to create disability structures in this country that we can be proud of.

In my mind, that point is now.

Simon Harris is a Wicklow-East Carlow Fine Gael TD

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