Issues highlighted included access to education, the lack of therapies as a result of Progressing Disabilities, Supporting teenagers for life after post-primary school.
The Joint Committee on Disability Matters considers all disability matters, including monitoring Ireland’s implementation of the United Nations Convention on the Rights of People with Disabilities (UNCRPD). A virtual meeting of the Joint Committee was held on Thursday, February 10th to discuss how current education provision in Ireland is aligned to the UNCRPD.
An invitation to present at this meeting was issued to the Kildare branch. Following discussion with Rita Walsh and Grainne Gorey of the Kildare branch and within Down Syndrome Ireland, we believed that the specific issue in Kildare was one that related to Article 26 of the UNCRPD, which outlines the right to “attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life through comprehensive habilitation and rehabilitation services and programmes, particularly in the areas of health, employment, education and social services.”
We appreciated the opportunity for our Kildare branch to speak directly to the committee with the focus on this article of the UNCRPD, as they were facing an urgent issue which would result in choices for adults with Down syndrome in Kildare being removed, with potential long-term consequences for their continuing health and wellbeing. As the focus of the meeting was also on Article 24 of the UNCRPD, which “provides not only that children with disabilities should not be discriminated against but also that they should be able to participate in the general education system”, we felt that our Head of Education, Dr. Fidelma Brady, would be best placed to reflect the national issues on education as an observer at the meeting.
An excellent presentation was given by Rita Walsh who gave an overview of the activities in the Kildare Branch and focused on their adult education programme and their expansion into a Horticulture Programme for their adult members. Rita gave an account of both of the branch horticulture programme sites in Kildare, Sallins & Donadea; and described the benefits of both programmes for members. The committee heard from three other organisations in addition to our Kildare branch. A number of deputies posed questions and requested additional information from the speakers.
DSI outlines issues with Progressing Disabilities
Deputy Holly Cairns then requested having a chance to speak directly with Head of Education Fidelma Brady, in light of the previous communications issued by Down Syndrome Ireland to the committee on issues around progressing disability services for young people with Down syndrome. Deputy Cairns stated that “for education to be inclusive and accessible, individual needs must be understood and supported by a range of medical and educational professionals” and referred to research conducted by Down Syndrome Ireland which highlighted the uncertainty families faced and the lack of therapeutic staff.
Since this was an issue being raised with many TD’s in their constituency offices, Deputy Cairns asked that Fidelma would provide the committee with an update on the current situation. Fidelma responded to Deputy Cairns as follows:
“I thank the committee for having me as an observer here today. One of the biggest areas we are working on at the moment is the lack of therapy services for our members. As the aim of this meeting is to align education here with the UN Convention on the Rights of Persons with Disabilities, this would fit strongly with Article 7, which relates to children with disabilities. The therapy provision in this country is falling so far behind it is almost meaningless and non-existent. The progressing disabilities services programme has been set up and is ongoing but many areas still have not transitioned to the unified approach that was in the plan and, I am sure, still is in the plan.”
“Many areas have not made the transition to unifying the approach. As a result, children are waiting several years on a waiting list for therapy and transitioning. There are very few therapy supports for children transitioning from preschool to primary school. There are very few assessment reports to back that up because the professionals are not there. Teams have not been set up properly and are not running yet. The regular therapy, for example, for pupils in second level education is so rare it is almost non-existent, even though these children, particularly the teenagers, have very complex language needs.”
“There is a lot of evidence on evidence-based therapy service requirements suggesting therapy should not just be delivered once a week on an ad hoc basis but should be delivered several times a week to the children who need it, in both primary and post-primary schools. This is falling so far below the required level the research shows is necessary that it is meaningless. In some cases, parents are having to opt for private services and employ their own speech and language therapists. That is not an option for everybody.”
“It is vital the unified approach becomes active and is up and running everywhere. I deal with a number of parents week after week. Yesterday I was with a parent whose child has not seen a therapist of any sort, including an occupational therapist or speech and language therapist, for two and a half years. That parent does not have the option of doing it privately. That case is duplicated throughout the country. As Ms Hayes said earlier, this is a pure indication of where the structures, systems and procedures are impacting on the inclusion and education journey not just of young people and adults who are in further education or employment, which is the main focus of today, but right across the board at primary and post-primary schools. It needs to be addressed.”
Fidelma went on to inform the meeting that we, in Down Syndrome Ireland, had finished a new report on the facts and figures we have gathered from our members in recent years on the issues with therapies and the progression of the unification model for disability services. She indicated that we would be happy to share that report with the Deputy and the committee as it contained the most up-to-date figures we have available to us. A copy of the report was requested and this has since been sent to the Committee.
Preparing teenagers for life after post-primary school
As the meeting concluded, Fidelma made an additional contribution in relation to the topic of adult employment and the importance of second level education adequately preparing our teenagers for life after post primary school:
“The focus today has been on employment and further education. Underpinning all third-level education or third-level employment options is the provision of an appropriate second-level experience. I do not think we can just jump across that and all of a sudden hope that employment will work out. There are a couple of aspects to that, which are particularly pertinent in respect of Article 24. For example, the ongoing review of the senior cycle in post-primary school needs to be urgently accelerated and completed without any further delay. For example, in some schools transition year, TY, is still not available for all students. Some schools do not provide a TY course or the leaving certificate applied; they only provide the traditional leaving certificate. Schools must ensure that all these programmes are provided to all students with special education needs.”
“Another worrying fact came out of a recent survey we conducted of our own members, which is that 75% of those at post-primary school, and young adults, had no career guidance whatsoever. They had no career guidance training or tuition. That severely limits post-school options, be those in employment or further education. Again, disability awareness training is a major factor and teacher training must take that into consideration. We need to prepare these young people adequately at post-primary level and we must come out of the mind-set that attendance at a day service is the only or main option available. More supports are needed at post-primary level to manage the transition to adulthood, be that into employment or further education. Unless the supports are in place at post-primary level, we are missing a step and it will be problematic.”