Critique of NESC HDF Paper “Building Better…”, June 2021
This critique relates to the report: “Building a New Relationship between Voluntary Organisations and the State in the Health and Social Care Sectors: NESC Secretariat Paper for the Dialogue Forum with Voluntary Organisations (June 2021), by Dr. Damian Thomas. Perenthetic references to the report in this document will be to Thomas, 2021).
Executive Summary of VVI’s Response
Long-term consultation regarding disability services is a major theme of the NESC-HDF paper being discussed here.
At least with regard to disability issues, this report must be set aside because its recommendations ignore and contravene the State’s “general obligations” under the Convention on the Rights of People with Disabilities (CRPD).
In particular, the total absence of “organizations of people with disabilities” in the Health Dialogue Forum itself, in the preparation of the paper (interviewees and publications), as well as in the consequent recommendations, ar anathema to Article 4.3 and General Comment 7 of the CRPD, in particular – i.e., sections dealing with “consultation.”
In 2019, Catherine Day was commissioned to head a report into the relationship between the State and the “voluntary” health service sector. The report was published as The Independent Review Group report (IRG, 2019).
As a result of one of its recommendations, the Minister of Health set up a Health Dialogue Forum (HDF) where the Dept. of Health could consult with the voluntary sector on health service provision with a view to getting the best quality of provision for the service-users.
This HDF in turn commissioned the National Economic and Social Council to report into positive lessons to be learnt from the covid experience, to show the way forward in future co-operation between the State and service-providers. 70% of disability services are provided by the “voluntary” sector (Dept. of Health Capacity Report, July, 2021).
The NESC report being responded to here has been signed off on by the Minister for Health and the respective CEOs of the HSE, Dept. of Health etc.
Summary of Report
The NESC report sees the changes in service-provision during covid (Chapter 3) as being evidence of a new transition to “accountable autonomy” of voluntary service providers (Chapters 4 and 5). This “accountable autonomy” is a proposed solution to the claimed problem in the IRG that a balance had to be struck by the service provider between accountability to the State funder on one hand, and autonomy of the service provider on the other. Key to this new way of working are the two key forums: firstly the Dept. of Health’s HDF (mentioned above), and secondly, the newly reformed National Consultative Committee, set up by the HSE.
From a disability perspective, only service-providers are represented on either of these committees, and the report is certainly indicative of this gloss from the HDF perspective.
Fatal Flaw – DPOs aren’t even mentioned
The report contains dozens of perspectives from service providers, both through its main vehicle of qualitative interviews, and through service provider publications, including from many disability service providers (DSPs). DPO voices are completely absent from the report. According to the Convention on the Rights of People with Disabilities (CRPD), the only “representative organizations” of disabled people are “organizations of people with disabilities” (General Comment 7, para. 10), which we know as Disabled Persons Organisations (DPOs).
Indeed in the report itself it is clear that the authors had no idea of the existence of DPOs, let alone their significance, and there is not even one reference to the Convention on the Rights of People with Disabilities. If the authors had read the Convention and its General Comment 7, they would have learnt that “representative organizations” of disabled people, are not only to be distinguished from service providers, but that these DPOs are to be prioritised over DSPs in consultations, since the latter “may have a conflict of interests” in advocating for their service users (CRPD, General Comment 7, para. 13).
At the end of a long list of constituent members of the “voluntary sector,” the report does mention “Advocacy and representative groups,“ which could indeed refer to support groups such as parent-led groups, but that is the only slight hint that there even could be such a thing as a DPO, and even here, DPOs are neither acknowledged nor distinguished (Thomas, 2021, Ch. 2). For the rest of the report, “the disability sector” is conflated with “disability service providers,” “disability (umbrella) groups,” and “Section 38 and 39 organisations” (ibid., passim).
Apart from the author and the key Dept. of Health official acknowledging to me, personally, that they did not even know what a DPO was before my contacting them, further evidence that the authors are blithely unaware of the existence of DPOs, let alone the State’s obligation to prioritise them in consultations, occurs where we are told in regard to the National Consultative Committee:
The membership of the Committee is also to be broadened to include service providers, family representatives, the HSE and the voice of people with disabilities, reflecting the view that ‘if we are serious about collaboration everyone has to be on board…we need to have representation of people with disabilities in this committee’” (ibid., Box A5).
No matter that such disabled people could themselves be allies of or alibis for service providers instead of being represented through their DPOs as specified in the CRPD.
Giving DPO Powers to the Service Providers
There are signs that the authors actually mistake disability service providers for DPOs, e.g.:
“Their [disability service providers] roots within the local community enables these organisations not only to be more responsive to local needs, but to act as advocates for service users.” (ibid., 2.3).
“… the HSE is keen to preserve in its delivery model… their [voluntary bodies’ – read service providers’] advocacy role…” and that the staff “know them and understand their needs” (ibid., 4.14).
An example of a “grass roots forum” where disabled people’s issues filter up, is given as Inclusion Ireland (a service-provider) (ibid., 3.8).
One attempted defence from a Dept. of Health official has been to say that the HDF and the report both have a very narrow remit regarding service provider issues alone. Although this can’t make sense anyway, since service-providers do not operate in a vacuum, and service-provision is exactly the sort of context that the CRPD is written for, the report itself belies the “narrow remit” claim when it conflates service provider issues with service-user issues (e.g., Alone’s phoneline identifying issues on the ground) (ibid., 4.3).
The “positive feedback” of clients or service users (ibid., 4.6) is no replacement for representation through DPOs (General Comment 7), however much the disability service provider claims to be “embedded in the community” (ibid., 4.9).
The wish “that voluntary organisations [read service-providers] are drivers of ongoing policy change rather than passive recipients… “; and the State’s commitment to “consulting with voluntary providers on a regular basis and in a meaningful way, including on Sláintecare and other relevant policy developments” so that “all members of the Forum will be invited to consider how they can best work together to deliver national strategy” (ibid., 5.6), is fitting of treatment of DPOs alone (according to General Comment 7), but we know from experience and continued exclusion that DPOs do not figure in this plan, and as such, without the clear prioritisation of DPOs, this is an utter subversion of the CRPD.
Undue Homage to Covid Practices
A worryingly cosy relationship between the State and DSPs comes in the report, with their self-praise mixed with mutual congratulations indicating somewhat of a mutually beneficial echo chamber – that may not necessarily be beneficial for disabled people.
Instead of “nothing about us without us” we have the two parties who should be accountable to us talking over our heads. Indeed, the report gives us a window on the veritably sumptuous feast of consultation that the State has been laying on for the service providers, while it has effectively closed the door to us and left us outside in the cold – the very DPOs that the State is obliged to prioritise in consultations.
We in VVI found ourselves generally shut out of HSE consultation during covid – and remain so. Our advice and recommendations generally went ignored, except in one instance when it was relayed to a service provider for it to do with as it wished.
See VVI’s Initial Submission to the Dept. of Health and HSE:https://vvi.ie/vvi-concerned-about-covid-vaccine-plan/
So, when the State sees the current consultative forums as being “comprised of senior decision makers from the statutory and voluntary sectors” (ibid., 4.3), it turns the CRPD on its head by bestowing the decision-making role on the service providers, despite their potential conflicts of interests.
We draw a contrast between our being shunned and frustrated, with the opposite experiences of service providers being accommodated in structures that “afforded voluntary bodies a voice at the centre of the policy dialogue and a real sense that their concerns were being actively listened too” (ibid.).
Other Conceptual Confusions
The portrayal of the binary concept of service providers being both autonomous and accountable to the State – without the involvement of any other entity – (ibid., 2.4; 4.7; 5.3), only becomes possible when the primary experts and main stakeholders (DPOs), are omitted. Instead of the false binary portrayed, both the State and third party service providers, have to be accountable to DPOs, instead of a service provider (self-described) “being allowed to get on with what you are good at” (ibid., 4.4) – whatever that might mean…
The report is nowhere more accurate than where it states “Changing relationships, organisational culture and attitudes is not easy” (ibid., 2.5), but more than anything else, this statement should be seen as applying to the change in culture needed among the State, its report-writers, and the far-too-powerful service providers, in order to put an end to the continuous trampling of our Human Rights. Instead of proposing a “a deepening and widening of the relationship” between the State and disability service providers, which is already very cosy, we instead insist that our rights as a DPO to be prioritised in consultations be respected.
A Dept. of Health official told me, personally, that DPOs didn’t need to be even mentioned, since she felt that there were other forums where the Department was dealing with us – which is factually incorrect, as well as wholly missing the point of DPOs intrinsic significance to everything disability-related.
The “partnership” the State has with the service providers (ibid., 5.3), needs to be recalibrated and transposed to focus instead on the still-forgotten and still-condescended-to minority – disabled citizens through their DPOs. As long as service providers, instead of ourselves, continue to be prioritised in consultations on “institutional and policy reform” (ibid., 5.4), the State will remain in total contempt of the CRPD.
The overall cause for this ongoing marginalisation of DPOs is the inaction of the Department of Children, Equality, Disability, Integration, and Youth, which as the “focal point” of the CRPD, has the responsibility of co-ordinating its implementation throughout statutory bodies etc. But for the moment, it sufficient to say that this NESC report, being based on the absence of the most essential stakeholders, is irredeemably flawed.
As soon as possible, systems need to be configured so that DPOs are clearly distinguished from other actors, and prioritised in all consultations.
In the meantime, as per its obligations under international law and the guidance that is the CRPD, the State needs to set aside this NESC report with regard to disability-related matters. Indeed, since these are so bound up with non-disability matters throughout the report, it is likely that the entire report needs to be set aside.
Co-ordinator of VVI
© VVI, 2021.