Ms Linda Comerford:

I thank the Joint Committee on Children, Disability, Equality and Integration for inviting me to appear today to discuss the challenges faced by children and their families who require and are awaiting an assessment of need.

For those who may not know, the campaign Enough is Enough was founded four years ago by a group of parents. We were all parents of children with additional needs and we were all extremely frustrated at not being able to access timely assessments and services that our children needed. We decided that we were no longer going to sit back and tolerate our children being continually failed by a broken system. We wanted our voices and the voices of our children, both young and older, to be heard and so Enough is Enough was born. We do not want scraps and empty promises; we want rights and action. It is simply not good enough that families have to consistently fight hard for vital assessments and services that their children require to support them in their development and everyday life.

Data to the end of September show that the backlog of cases for assessment of need has grown from 5,533 just a short while ago to 6,058. Of those, the HSE stated just 185 were overdue for completion because of exceptional circumstances. These are not just figures, they are children. This is a shocking indictment of our Government. Despite a legal obligation on the State to complete assessments within three months of an application being received under the Disability Act 2005, this does not happen and many parents are forced to take legal action. As a parent, it is gut-wrenching to see one's child struggle and not be able to help. We fight for assessments and services in order that we and our children can get the support we desperately need.

The fight for an assessment of need is just the beginning. When an assessment is finally completed and a child receives a service statement outlining the therapies and supports he or she needs in order to thrive, parents have to once again fight for their child to receive these therapies as the child's name goes on a lengthy waiting list to access the supports required with many of them ageing out of one list and having to start the process all over again on another list. This is extremely frustrating and very damaging to a child's well-being and development.

We also have many concerns regarding the new standard operating procedure for assessment of needs. How does the HSE think that a desktop examination is an appropriate way to determine if a child meets the definition of disability? Parents and guardians fill out the application forms but are not professional therapists and may fail to provide information or fail to see areas of concern in their child that a professional would notice. This means their application may be rejected and the child will not be assessed or will have to wait longer to be assessed should the parent have to provide additional information or where the HSE facilitates an appointment with an appropriate health professional to establish more detail regarding the child’s presenting difficulties.

What parents want is very clear. We want a clear pathway to services and supports from time of diagnosis to end of life, timely assessments followed up by appropriate therapies and services that can be accessed when needed, full enactment of the Education for Persons with Special Educational Needs, EPSEN, Act and a commitment from the State to deliver a rights-based approach to services and support for persons with disabilities and do away with the loophole that provision is "subject to resources". We want an oversight committee with a regulatory remit to oversee and govern the delivery of disability services. We want our children to be treated with respect and dignity and not as if they were invisible or lesser than others and for our voices to be heard. We do not want pity or empty promises; we want action and positive change.

On behalf of Enough is Enough, I again thank the committee for inviting me to attend. I am happy to take any questions and discuss this issue more comprehensively.