Oireachtas Joint and Select Committees
Thursday, 21 October 2021
Joint Oireachtas Committee on Disability Matters
Aligning Disability Services with the UN Convention on the Rights of Persons with Disabilities: Discussion
Ms Samantha Kenny:
I am a mother to a six-year-old little girl who has various physical disabilities, an intellectual disability and medically complex needs due to a rare genetic condition; my boys, aged 14 and ten, are autistic; and a 16-year-old boy who has no diagnosis. I have spent the past eight years of my life interacting with various agencies across the disability sector, including child disability services and the medical system, as well as attempting to navigate and advocate for my children within the education sector and in life in general.
As a parent and full-time family carer, the past eight years have been extremely eye-opening. I have come across obstacles I never dreamed of and genuinely, the fight to not only obtain support but to also keep it has been absolutely exhausting. In my submission, I wrote about how becoming a parent to children with disabilities massively impacted every facet of my life. I knew from reading accounts from other parents of children with disabilities and adults with disabilities how lacking supports and services are, but it was not until I experienced them myself, that I truly realised how completely under-resourced and broken they are.
My daughter requires 24-hour care seven days a week. She literally relies on those around her to help her navigate life. I foolishly believed that because of the level of care she requires, we would not have to fight so hard and would receive better support than we did with her brothers, which was fairly sparse. In comparison to my daughter, they would be fairly independent within reason. Due to the lack of services and supports within society, we have had to rely on a family member to help us secure a suitable family home and save non-stop in order to make that family home suitable for her, the works for which have not been completed, because, quite frankly, the money it will take to do the adaptation and allow her some semblance of privacy in her home is just currently beyond our means.
As I sit here today in front of the committee, my child does not have access to her own bedroom or accessible bathroom and is relying on her family members to carry all 17 kg of her up and down the stairs multiple times a day to access what the average person takes for granted. My daughter is also ageing out of the charity support we need that provides the only small bit of respite we receive, which is nursing hours. Regardless of the chasing being done, we cannot get an answer on how or by whom this charity support will be replaced, which is terrifying, as it is the only form of respite we get.
My daughter is also a full-time wheelchair user which presents its own challenges, including transportation. We live rurally and have no public transport system that would be accessible to her. In order to transport her from her house - literally anywhere - we had to fundraise for a wheelchair accessible van. Fundraising was our only option. The chair my daughter needed meant the car we were driving was not suitable. There was an element of time constraints and we had no other means or options to fund the van.
Education is also an area many take for granted, but which presented us with many obstacles. This started at the preschool level when we had major issues securing funding to send our daughter over a county boundary to her special needs preschool which is ten minutes away, as it is the type of preschool needed for her, rather than sending her more than 30 minutes away to the special needs preschool in our county, because, that is how the protocols were set up. The transition from preschool to primary school again presented obstacles, not with my daughter, but rather the system and having to attempt to get the appropriate equipment from one building to a building ten minutes away. I never envisioned so much bureaucracy, red tape and delays with her getting and receiving the equipment she needs to access her daily school life.
We also experienced the education system from a different perspective with my two autistic sons who attend primary and secondary mainstream schools. As I am sure the committee knows and has heard from various sources within the media, support systems are varied depending on location, school type and even the principal, especially now that the distribution of support services is decided at the school level and can be dependent on the opinion of the principal of the needs of your child. In our case, it has meant at the primary school level, considerable advocating to ensure my children received not only support but the adequate type of support. The last part is key, because, so often the type of support is decided by someone who does not have the intimate knowledge of the support needed, as the person who needs it or his or her caregiver.
I wish to raise the financial implications of having a loved one with a disability. The lack of services and supports mean many times in the past we have had to privately access services, due to there not being therapists available or those therapists only being available to order and adjust equipment, rather than provide regular sessions to work on the issues my children face. A premium also seems to be placed on equipment once it is discovered to be needed for those with disabilities. This means car seats, seating systems and even occupational therapy items can become expensive and families end up with very long waiting periods to get equipment or if teams deem it as not essential, but rather a want, it is not funded at all.
In our life examples, this includes a chair my daughter relaxes in. The average person enjoys nothing more than coming home and sitting on a couch, but in my daughter's case, it was expected that she should use continually the chair that is very upright and used for activities and eating - akin to someone being expected to sit and watch TV on a dining chair instead of a sofa. We had to source the appropriate seat ourselves, which comes with the added stress.
It has, in my experience, been vastly different to what is so often portrayed in the political sphere when accessing services and supports in life. The funding is not there, the therapists are not available or hard to source or it is hard to fill any open positions; the services are extremely limited and most of them are Dublin-centric and provided by charity, including respite care services and nursing. I thank the committee for inviting me here today.