“I’m done fighting, I can’t take it anymore.” That’s what a mother told me at a recent disability services meeting. The saddest thing is that it’s not the first time that I’ve been told this and yet it continues to affect me.
When the Taoiseach appointed me Disability Minister in July 2020, I was surprised to learn that the vast majority of the €2.1 billion for disabilities had largely been focused on providing residential places and day services. These are absolutely crucial supports and investment in these areas will continue, and in fact more is needed. But other areas need attention at the same time. In my two budgets to date, I have tried to redirect funding, with a particular focus on respite and recruiting clinicians to deliver therapy, as well as increasing the number of assistant hours staff that people can access.
However, change can be slow. Sometimes it’s not just the funding direction that needs to be looked at, but in some cases there’s a culture that needs to change, and I’m not talking about the government. But I think that’s changing, and if we keep persisting, we’ll get there. For me, it is essential that there are clear pathways in place for people with disabilities so that people know what supports are available and where, regardless of diagnosis or need.
A key principle that I have tried to adhere to as a minister is that I am also a disability advocate in government. It is not only my job to ensure that sufficient funds are guaranteed in each budget so that services can be improved, but also to ensure that the services already in place are operating at full capacity for people with disabilities, and that we will sweat all the trumps. Fortunately, I have yet to meet a minister or government colleague who has not supported me. There is a sense of purpose and a recognition that there is work to be done and that we just have to get on with it.
There are so many initiatives underway that I hope can have a positive impact, whether it’s the autism innovation strategy, the development of 19 respite homes across the countries in 2021 and 2022, the launch of the Day Service Deferral Scheme, the start of the Irish Sign Language Act, funding for the AsIAm Information Support Hotline, the new Disability Promotion and Awareness Fund, the upcoming launch of Decision Support Service or commission to research gender-based violence against people with disabilities.
But these are almost peripheral if some of the major issues facing people with disabilities and their families are not addressed. I think it’s my duty to be open about where disability services work, but also where they don’t. People deserve respect. For those who know me, they know I’m outspoken and sometimes that can get me in some trouble (or maybe a lot!).
Key services such as the provision of therapy for children must operate in a way that ensures children can access therapy in their community and within a reasonable time frame. We have legislation and policies to beat the band and I know that tens of millions of euros are spent on providing therapies for children but in some cases it is clear to me that this massive investment does not translate by field services. In some cases, recruitment and retention can be critical issues facing the HSE and its funded agencies, but I also know that the application of certain policies can be too slow, too complicated or in some cases missing. common sense. . And that causes anger and frustration and anger among parents, and I understand why.
I know from meeting the parents and visiting the services themselves that the front line staff, be it clinicians, day service staff, respite staff and residences etc. its best to provide services and support people who access the service. The problems often lie elsewhere in the system.
Shortly after being appointed and while I was still in the process of taking over the portfolio, a senior civil servant told me that I “got too much into the weeds”, that ministers generally take a higher level. But, for me, that’s where the problems are, where I can better understand why services aren’t working for parents or why wait lists aren’t going down.
This hands-on approach has certainly been a bit of a readjustment for the HSE and what little back and forth we have had on certain issues has sometimes spilled over into the public domain. I’m not trying to catch people or point blame. Like any of my colleagues in government, I just want to make sure the policies work for children, families and people with disabilities themselves. I need to know if additional resources are needed or if I need to make changes to a given policy.
One such area is the rollout of the Progressing Disability Services (PDS) program, which has been one of the most fundamental changes to disability services in this country in decades. But I cannot affirm here that the deployment of the PDS went smoothly, far from it. I think the merits of the SDP and the equitable access to services it strives for is the way forward, but in its current form it is simply not up to par with children or parents.
We need to make some changes to make sure it works, that therapies are delivered in person, and that parents don’t have to wait years without service or have to pay for themselves privately. This includes returning therapists to specialist schools who may have lost them, suspending the use of Individual Family Support Plans (IFSPs), and over the next few months I will begin a development audit of the PDS, which will aim to identify the elements that are simply not. t work and what areas need additional support to ensure delivery.
I can only mention that one of the main drivers of change on disability is the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), which Ireland ratified in 2018. It is about giving people people with disabilities the choice to live their lives as they want and ensure that society is also accessible in all its forms. I think we have made a lot of progress in making the UNCRPD a reality, but we still have a number of issues to resolve. The UNCRPD does not just apply to health issues, but to all of society. I don’t think it’s been fully integrated in a number of areas, and that’s why the UNCRPD implementation plan will be a key framework that will ensure that we make the necessary changes, including introducing of the optional protocol.
The HSE and I don’t always agree, but that’s okay. In fact, I’d be worried if we still agreed. My job as Minister is to develop policy, secure funding to implement it, and then ensure that the HSE operationalizes it locally and delivers services as intended. I need to be assured that people with disabilities can access the services available to them and if that is not working, I need to know why. And sometimes that means calling the HSE. It’s uncomfortable for them, but you know what, it’s even more uncomfortable for children, families and people with disabilities when they don’t have access to services.
Some parents may be done fighting, but you have my word, I still have a lot of cartridges in me.
- Anne Rabbitte is Minister Delegate for Disability at the Ministry of Health and at the Ministry of Children, Equality, Disability, Integration and Youth.