Mr. David Doyle:

I thank the committee for inviting me to the meeting today. My submission has two elements. One is that I recommend to the committee that consideration be given to transferring the HSE disability unit, including its budget allocation, disability staff and accommodation, to a specialised Department for disability. The responsibility would then lie with the Minister for disability. Second, I propose the statutory provision of a guardian-carers liaison office for families, including the person with disabilities within that newly-formed Department for disability. This office would be the voice for them in planning services, highlighting gaps in services and would be a member of the annual financial allocation team. The office would engage with families, guardians and carers, solicit their views and expertise and advocate at the highest level.

I am the proud father of a 28-year-old young lady with a diagnosis of autism spectrum disorder, ASD, moderate learning disability and complex mental health, who from an early age presented with severe challenges in behaviour that required multiple staff and family to support her. I am a long-standing advocate that when a child or adult is diagnosed with autism, it is a diagnosis for the whole family. It impacts the family directly. My submission stems from having over 21 years' experience of being self-employed in a commercial, unrelated profession to now having 22 years' experience of working on the ground at senior management level within the disability sector.

I am delighted to be able to share my personal experiences and to offer two suggestions of alternative pathways for service delivery. Most of all, I hope that, if taken on board, my input will offer hope to families who feel that the disability sector is not catering for their needs at this time.

My recent professional experience has seen me work on the front line and at senior management level. I have sat on numerous consultative forums. Currently, I fill the roles of development officer and complaints officer and I manage an equestrian therapy centre for people with disabilities on behalf of my employers, but my real expertise comes from being a parent of a child with autism and intellectual disabilities. I have travelled and conversed extensively in Europe and North America in trying to understand the world of autism. It was during one of these trips that I recognised the value of equine therapy, especially the horse boy method for children and adults with autism. This led to the establishment by my employers of an equine therapy centre specifically designed for people on the spectrum. However, members should note that this submission is based on my personal viewpoint, expertise, observations and research.

It is important that I acknowledge the hard-working, caring and sometimes frustrated local HSE community healthcare organisation, CHO, disability managers, case managers, multidisciplinary teams and financial and administration staff who, despite highlighting the budgeting and planning shortfalls to the hierarchy of the HSE, receive little hope of ever being able to cater for the disability needs in their respective areas. It is this lack of prioritisation of disability services and a perceived lack of empathy towards children and adults within intellectual disability and autism services at the highest level in the HSE that frustrate families. It is so demeaning to families to have to lobby Oireachtas Members for basic services constantly. Unfortunately for people with disabilities, the voices at the top table when the HSE is allocating yearly budgets to the disabilities sector are either not advocating strongly enough or are not heard. Either way, it is time for change; hence, my submission.

The establishment of the first Minister of State with responsibility for disabilities in 2016 gave a glimmer of hope to the disability sector. Alas, it became clear that, without ministerial and departmental control of services, finances and future planning, disability would remain subservient to the acute sector. Intellectual disability and autism is the one sector under the health remit that can be preplanned. The diagnosis is lifelong. It makes for easy strategic planning of services along the different stages of a person's life.

The publication in 2012 of a report, entitled, Value for Money and Policy Review of Disability Services in Ireland, gave great insight into the sector and what needed to be done. Its vision was:

- Every person with a disability would have access to an income which is sufficient to sustain an acceptable standard of living;

 Every person with a disability would, in conformity with their needs and abilities, have access to appropriate care, health, education, employment and training and social services;

 Every person with a disability would have access to public spaces, buildings, transport, information, advocacy and other public services and appropriate housing;

 Every person with a disability would be supported to enable them, as far as possible, to lead full and independent lives, to participate in work and in society and to maximise their potential; and [especially]

 Carers would be acknowledged and supported in their caring role.

The current Minister, following lobbying by service users, families and providers, secured additional funding for the disability sector in 2020, which in itself provides evidence that the HSE is not advocating for disabilities. This additional funding was welcome, but I appealed to the Minister then and I appeal to him now for all new money to be earmarked for the provision of new front-line services, enhanced services, future planning and reducing waiting lists. It should not be used for reducing the current deficits of local CHO offices, as that would be to reward the HSE for years of underfunding the sector and not make inroads into the current difficulties. It is for this reason that I strongly recommend to the committee that consideration be given to transferring the HSE's disability unit, including its budget allocation, disability staff and accommodation, to a specialised department of disability within the Department of Health.

The second element of my submission has to do with the partnership approach. Carers, families and guardians play a major part in service provision. Their efforts usually go unappreciated and unrewarded. This is especially evident in families with an adult with intellectual disabilities or autism. Following the establishment of the HSE, it rapidly abandoned the "enhancing the partnership" policy. It was truly astonishing to witness the uncaring and unempathetic approach by the HSE towards the plight of families. There is still no long-term service plan. More than 1,250 people are supported in a family home where the primary carer is over the age of 70. Four hundred of those carers are over the age of 80. The situation has to change.

I propose the statutory provision of a family-guardian-carers liaison office within the disability department. This office would be the voice for same in planning services and highlighting gaps in services and a member of the annual financial allocation team. The office would engage with families, guardians and carers, solicit their views and expertise and advocate at the highest level.