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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.
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Well said our people using many of these services deserve better. Accountability is sadly missing. HSE internal Audit into St John of God around € 1.6 million Topup payments to fourteen managers of the CHARITY. They are big Business not Charities and the HSE report into these public funds remains unpublished , Why ask Minister Harris ? Over a year PAC told in July 2016 after Console that SJOG was to be Audited .
@PVD: those saint John of God’s payments were taken by John pepper and surrounding management staff last year. At the very same time he led the charge in closing down a service in blackrock area due to lack of funding. Have a wild guess how much it eould have cost to keep the service open…1.6mil.
Because of media coverage at the time the service was extended for a year to take the heat of those decision makers. By sheer coincidence Mr pepper extended the closing date until just after he is due to retire. Now one might say it’s John of God’s so who cares but the receive a huge amount of public funding which has gone straight into the pockets of pepper and the board dispute explicit warnings not to use the money for bonuses.
@PVD: The public accounts commite should be in these guys six months before retirement to ensure funds meant to keep children off the street aren’t ending up it retiring board members bank accounts
@ChuckE: 100% don’t know why the report and recommendations have not being published and why HSE taxpayers money is not treated with more respect. PAC should have followed up on it even Ministers McGrath and Harris are very quite on these payments, we still await clarity
It looks like families will be left to shoulder the burden of looking after children with disabilities once again.In our own parish the whole community got together to set up a special playground in the local school for autistic children.This had the effect of getting local councellers and by extension local TDs involved.This only happens when there are votes at stake.
Tell us something we don’t know. The money would be better spent on the ground staff not the over paid muppets in their big offices.
Never, HSE poor management and no accountability who knew, the system is broken and obviously money has to be pulled from the black hole until it fixed, according to our government there is more money now but we will still pump it into a system that doesn’t work going backwards again.
I tell you there will never be an efficient health service until the nettle of accountability is grasped once and for all. That will be resisted with tooth and nail because the fear of exposing themselves.. the administration management., I mean, not the front line staff, to scrutiny terrifies them because of their lack of knowledge and know how.
Poor management and lack of accountability is the norm across all our public services.
It is factually inaccurate to say that residential services do nothing to support children to reach their full potential. My brother’s home did wonders for him & for so many others. Some individuals doubled their life expectancy. My brother learned how to sit up, engage & communcate his needs and wants despite being non verbal. The statement about person-centred care is also false. HIQA found that staff in my brother’s home were person-centred in approach. And what about the countless families who are desperately trying to find a place in residential care for their loved ones? It’s people with severe and profound needs like my brother who are going to suffer by the pig headed refusal of advocacy groups to see the value in residential care.
The author says: “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.”
However, we also know from HIQA reports that life in residential care can be fulfilling and meaningful. There are reports that say things as:
“The inspector was satisfied that staff and management were person centred in their approach to resident care. The inspector saw residents going on outings, being able to spend leisure time together and develop friendships. Residents were offered independence while safeguarding security.”
“The centre was managed in a way that maximised residents’ capacity to exercise personal autonomy and choice in their daily lives. For example, residents choose what time they got up and went to bed, where they went shopping and who they met. Residents were enabled to take risks within their day to day lives. For example, go for walks, go on holidays and enjoy a social drink.”
“Residents had opportunities to participate in activities that were meaningful and purposeful to them, and which suited their needs, interests and capacities. For example, watching particular television shows, attending a day service or chatting with staff. The inspector noted the level and variety of activities had increased significantly since the previous inspection. Activities appeared to be an integral part of the daily routine, tailored to individual needs and flexible.”
“Residents were provided with a social model of care. They engaged in community activities such as going to the cinemas, to concerts and other events. The activities programme was flexible. On the days of inspection the inspector saw residents going out to a fair in a local town, swimming, enjoying a foot massage, engaged in board games, going for walks, shopping, visiting the onsite church and visiting the onsite canteen.”
(Above quotes taken from a 2016 HIQA report for St Mary of the Angels, Co. Kerry)
It seems to me that the author sees no value in residential care and only wants to see HIQA reports that confirm his views while ignoring other reports which would challenge his preconceptions.
People with disabilities are second class citizens in Ireland
The provision of individual syle care is extremly expensive and labour intensive.. so thats why institutional type care persists… so economy of scale brings down staffing costs.. while far from ideal.. i think that will be the reality for some time to come
Until civil servant are made accountable and Sackable nothing will change !
Just have a look at the local Doctor’s house & garage and follow the money and one would think that the Hippocratic Oath is an oath to Capitalism.
What can one expect from a Lei Fine Gael type ?
How dare these gay men use our tax dollars taking this nonsense to the Supreme Court??? Guess what, some people don’t love what you do, just like if you wear jeans that hang below your butt, some people won’t like that, or if you hum along to your music on the train, some people won’t like that…..GET over it.
@Dave McCrea: Lol I commented on the wrong article
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