TAOISEACH LEO VARADKAR was, I assume, poorly advised when he misled Mick Wallace TD in response to the Deputy’s query regarding a child with autism whose mother was advised by the HSE to call the Gardai.
During the continuation of Leader’s Questions, The Taoiseach, in agreeing with Mick Wallace TD, stated, “The money is not being spent across disability services as well as it could be”.
The solution, according to the Taoiseach, is a
move to personalised budgets which give people with special needs or disabilities a personal budget which they or their guardians can use in whatever way they decide is in their best interests.
The taskforce on personalised budgets referenced by the Taoiseach, of which I am a member, will report to Minister for Disabilities Finian McGrath TD in the coming weeks. It will not recommend personal budgets for children, or their guardians.
Families like the one Mick Wallace TD represented will see no benefit from the introduction of personal budgets. The HSE and the Department of Health are fixated on ensuring that personal budgets are only available to adults and that the monies available for personal budgets are ‘new monies’.
A paltry offering that will have no impact
In other words the €13 – €16 million made available for children with a disability leaving school and into adult services each year. In the context of a €1.7 billion disability health spend this paltry offering will have no impact of the lives of children with a disability.
There are countless parents countrywide who wish to avoid sending their children to institutionalised disability services that offer little by way of person-centred supports and do nothing to support children to reach their full potential.
The Taoiseach and Deputy Wallace, in criticising many traditional disability services, reflect previous government reports. The Value for Money (VFM) review of the disability spend, published in 2012, stated:
…those using disability services do not participate in society in any meaningful way … have little opportunity to self determine or to live full and independent lives.
After four years of six committees, 80 public servants and two government departments implementing the report no reform has been delivered and no benefit has accrued to persons with a disability.
For many residential care is unfulfilled, demeaning and sometimes brutal
The delivery of services responsive to the needs of children and adults with a disability is to be found in the three hundred and seventy contracts, known as Service Level Agreements (SLA), the HSE signs with disability service providers. Via the SLA €1.7 billion in public monies is distributed, of which €1.06 billion is spent on institutionalised residential provision for 8,371 persons with a disability.
We know from hundreds of HIQA reports that life for thousands of persons with a disability in residential care is unfulfilled, demeaning and sometimes brutal, including physical assault.
Poor management, lack of accountability and the institutionalised and segregated nature of services pertain regardless of whether we look at the €67 million given to private providers or the €370 million given to three large ‘charities’ (Daughters of Charity, Brothers of Charity, St John of Gods).
The Comptroller and Auditor General and the Department of Health have criticised the ‘block nature’ of this funding which is not matched to outcomes for persons with a disability.
Little appetite for reform
The last government, and Leo Varadkar as Minister for Health, had, in the context of numerous disability scandals (Rehab 2014, Aras Attracta 2014, Central Remedial Clinic 2014) an ideal moment for reform, but little appetite.
I wrote to the Taoiseach, as Minister for Health, in September 2015, asking him to compel the HSE to ring-fence 8-15% of Service Level Agreement monies for individualised and community-based approaches. This letter was supported by twenty-two CEOs of Disability Services who stated:
An explicit requirement within the Service Arrangement framework to annually grow the proportion of individualised, person-centred, community-based arrangements would also assist in securing the necessary buy-in from staff members and their representatives.
The Department of Health and the HSE were not for turning. Fast forward to today and you find hundreds of children with autism and/or intellectual disability are in crisis as a result of an unresponsive, inflexible and unaccountable system.
Families need community-based solutions
Families of children with a disability need access to the resources, funding and supports to find community-based solutions rather than, as Mick Wallace TD pointed out, having to do battle with the HSE until a crisis ensues and, in desperation, turn to segregated, institutionalised remedies.
As we trudge slowly towards a national commissioning framework it falls to long-time disability advocate Minister Finian McGrath TD to show he can wrestle real reform from this government.
Two simple measures would provide a lasting legacy. Ensure that personal budgets are made available to children with a disability and ensure that each of the 370 Service Level Agreements signed with disability service providers for 2018 ring-fence 15% of the grant for individualised, community-based models of service.
Paddy Connolly is the CEO of Inclusion Ireland, the National Association for People with an Intellectual Disability, and a member of the National Taskforce on Personal Budgets established by Minister Finian McGrath.