Ms Lauren Keogh:

My name is Lauren and I live in Meath, falling under CHO 8. I had my daughter Zara when I was 16 years old. A lone parent, very young and vulnerable, my parents supported me to ensure that I finished school, went on to college and worked full time to ensure I could provide for Zara. I have since married David, Zara's stepfather, and we have another daughter together, Robin, who is five years old. Zara is 13 years old. She is a funny character who always seeks a smile from others. She has a diagnosis of autism spectrum disorder, borderline mild general learning disability, hereditary neuropathy with tendency to pressure palsies, HMPP, and more. As a result of her diagnosis, Zara is listed on both disability registers, the ID and autism register and the physical and sensory register. She adores animals and is involved in a charity called Olivia's Special Horses, therapeutic horse riding, for the past two years. The founder of this charity gave Zara her very own horse called Felim. Zara is obsessed with him.

Zara was quite young when she presented with challenges. When she was in junior infants she was referred to psychology in school for her behavioural issues. She took her shoes and socks off during class daily, she was defiant and refused to co-operate with staff, including the principal. She struggled with concentration, she could not differentiate between work and playtime, and I was regularly called to the school to collect her. There was a slight improvement after psychological intervention when demands were reduced and adaptions made but we would continue to have regular challenges. At six years old she developed a palsy in her right leg which lasted six months. Through the neurology department in Temple Street, she was diagnosed with HMPP, a physical disability affecting the nerves in her limbs. When Zara reached fifth class in school, she became very aware of her difficulties and compared herself to her peers daily. The school could not provide a NEPS assessment so we went privately at a cost of €600, choosing not to pay my mortgage. Zara had learning difficulties. The educational psychologist also had concerns around ADHD.

The school then referred us to the disability team for assessment of need. The purpose of the assessment of need is to assess the child's needs and what services are required. She was labelled with a physical disability and all other concerns were dismissed. I challenged this and was advised that the disability team had labelled my child as physically disabled and what more did I want. I felt physically sick. I gathered from that that the staff only wanted to tick a box and move on to the next case. I highlighted the educational psychologist's concerns of ADHD and asked how they could just dismiss the observations of the professionals.

I was told they would look into it and call me back. Shortly after, I was told that the staff member dealing with Zara's assessment did not read the report submitted by the educational psychologist and that they would refer me to CAMHS after discovering this. I can only presume that the staff did not have time to read all the reports. Sickened I had that awful battle, I was glad that Zara was going to get the right service. "Thank God", I thought. Then I discovered that the waiting list was another 18 months.

After two months sitting on the 18 month waiting list for CAMHS Zara stopped eating and made regular comments about being fat. She also vocalised regular suicidal thoughts. Zara was ten years old. She needed supervision 24-7 so I had no choice but to leave work. The house needed to be cleared of anything with which she could harm herself. We hid the knives, medication, matches for candles and so forth. I chose not to pay my mortgage that month again and went for a private assessment. Expecting ADHD she was diagnosed on the autistic spectrum, which should have been identified initially in the assessment of need.

I went back to my GP and doctor on call, as I did not know where else to seek urgent help for her. The GP sent another referral to CAMHS outlining the seriousness of my concerns. Zara was seen within three weeks - that was May 2015 - and soon after was diagnosed with anorexia nervosa. CAMHS do not deal with disabilities so they would not provide psychology to address the root cause of anorexia. They also advised initially that they do not accept private diagnosis and they would only treat Zara as having HNPP. I asked them to treat Zara as Zara. I did not care about the label but needed help with the challenges she presented. Within a few weeks of thorough dealings with Zara for anorexia, CAMHS agreed with her private diagnosis of ASD. CAMHS referred her back to the disability team in October 2015 in respect of her ASD. They also diagnosed anxiety, sensory issues and difficulty managing emotional regulation. They provided a block of occupational therapy, OT, for this. Zara was discharged from CAMHS in November 2016 as she had beaten anorexia. That was a year and a half after starting with CAMH services.

However, Zara was still sitting idle on the waiting list for the disability team. It took more than 18 months on a waiting list to get back to the team that she first went to for an assessment of need, two and a half years after her initial referral for the assessment of need. Zara had her first psychology appointment on 13 June 2017 with the disability team.

There were many delays to Zara's treatment due to the current system. Under the Disability Act 2005, I was entitled to a service statement outlining Zara's needs and the services required within one month of Zara's assessment of need being completed, but the liaison officer who provides the service statement was on long-term sick leave. It took two years for me to receive Zara's service statement. Her assessment of need was completed in February 2015 and I only received the statement in February 2017. During these two and a half years Zara had a great deal to deal with - multiple diagnoses, including the unnecessary battle with anorexia nervosa, three operations, becoming a wheelchair user, three school moves as well as her daily challenges. Zara is only now receiving the correct services, two and a half years later. We were fobbed from one waiting list to another at a cost to our daughter's mental and physical health.

As a parent of a child battling her way through the system I have been through much unnecessary stress. Thankfully for my children's sake, I am a dedicated mother with a supportive husband and I pulled together the mental strength to consistently fight my way through this journey. There is no support for parents going through the system. Nobody tells one anything about the supports available or even where to look for resources. Last year, I was prescribed Xanax to help me cope. However, this affected me physically and I struggled to function. I decided to do a part-time FETAC level 6 course privately and at another cost. I qualified as a special needs assistant purely to try and cope with the demands of my daughter's needs. I was always very driven and had many goals to continuously develop and progress in life, always pushing myself further. Now my goal is to get through the day. As a person diagnosed with high functioning autism too, this is extremely difficult to adapt to. Even more difficult to comprehend is the lack of support available to siblings. I expect Robin to have complex issues in the future caused by the impact of Zara's meltdown. Something as simple as the availability of a sibling coping skills group or a peer support programme would make a huge difference.

I understand funding is everything, but we are only kicking a can down the road. These issues must be dealt with while children are young to teach them the coping skills and to teach the parents and give them the tools to help their child. Otherwise there will be enormous demands on the services in their adult lives. I am aware the funding allocated is based on the figures on the disability register. If the staff had time to deal with each case adequately, the results and figures recorded on the register for funding would be factual. Other children are being missed and not listed on the disability register. Ours was one of those families. Zara's autism diagnosis was identified through the assessment of need. During the assessment my concerns were not listened to, I was made to feel like an inconvenience and then like a parent wanting a label. All I wanted was the correct support, fearing what was to come if I did not get Zara the help I knew she desperately needed.

While excuses are made by those who are accountable, they are choosing not to eliminate the waste within the system. We must ask questions. What are we trying to achieve? Is it working? A system with enormous waste resulting in life threatening effects on its clients is not fit for purpose. As a person who likes things to be productive, meaningful and efficient, I encountered a huge amount of waste within the system and items that add value to a service not being utilised, for example, staff not being replaced when on leave, reports not being read, fobbing children from one waiting list to another and so forth. With HSE staff under serious pressure to cope with the demands, it is no wonder many are out on leave and the turnover is huge. I fear the future. What do I do if the psychologist we waited so long for gets pregnant or becomes ill? She will not be replaced, and neither will my daughter if she succeeds the next time.