Time to Move on from Congregated Settings: A Strategy for Inclusion

“Congregated settings” is the jargon term used in our health services to describe facilities where more than ten disabled people live. They range in size from ten up to several hundred, and, apparently, from excellent to very poor. In 2007 HSE set up a “Working Group on Congregated Settings” to ‘develop a national plan and change programme for transferring people with disabilities living in institutions into the community’ (Dail records – John Maloney 6th July 2010 in answer to Phil Hogan).
On July 12th 2010, under the headline “Institutions for disabled should be closed down, says report”, Carl O’Brien of the Irish Times, wrote :-
“ALL INSTITUTIONS for people with intellectual disabilities should be closed down within the next seven years because they are in breach of residents’ basic rights.
That is the main conclusion of an unpublished report by the working group established by the Health Service Executive (HSE) to examine conditions in “congregated settings”, or institutions with 10 residents or more.
The 72 institutions, which cost the State just under €500 million each year, accommodate some 4,000 people. Most are run by voluntary organisations and religious groups. The report recommends replacing them with supported or independent placements in the community.
The report, which is expected to be published in the coming months, found major variations in the cost of care across the congregated settings it surveyed. The average cost per resident was €115,000 a year, while costs ranged between €46,000 and €385,500 per resident in different units.”
The large charities providing services, and HSE, seem to have adopted a pre-emptive strategy. They will build lots of housing for people with disabilities, and fill it with their own long-term residents. This secures the long-term viability of the services, and will, I am sure, improve the conditions for the residents. However, is it what the residents want? Has anyone asked them?
Noelin Fox (a PhD student in Galway, writes “Are we creating new institutions for people with disabilities?” Based on an analysis of our obligations under the UN Convention on the Rights of Persons with Disabilities, Fox argues that parking large numbers of disabled people in campus settings is simply inadequate. It is hard to disagree.
This policy response is proceeding, largely using taxpayers funds, but there does not seem to have been any published economic, or human rights, evaluation of the new developments. It’s not known whether the report, apparently entitled “Time to Move on from Congregated Settings: A Strategy for Inclusion” has done such an evaluation, but they have considered campus settings, as well as dormitory settings in their work.
What is driving the large service providers? It’s possible that they are running scared of the idea of individual budgeting. This strategy would do away with the current focus on large line budgets for single institutions, replacing these with an individual budget held by the disabled individual, or their guardian where necessary. These individual budgets would be used to provide whatever services the disabled person chooses to help them live their own lives. Budgets would be set annually on the basis of an individual needs assessment for the client, rather than the current very cumbersome, and costly, clinical assessments. The implications of this for the existing large scale disability services are profound. They would need to reconfigure very extensively just to survive. However, a large number of new jobs would be created, so the state might get much better value for the same money.
The report remains closely held three weeks before the election. One wonders why?

Home care for the elderly

I’ve just finished watching the PrimeTime program on home care for the elderly. In summary, a number of not-for-profit and for-profit home care providers are using untrained staff, breaching various acknowledged standards, managing care staff very poorly, and generally providing crummy care to some of the most vulnerable people in society.

A nice man, Noel Mulvihill, assistant national director for older care indicates that he will write to his staff to instruct them to monitor the quality of the care they are paying many tens of millions a year for. One wonders what, exactly, Mr Mulvihill and his colleagues have been doing for the last few years. In fairness to them, they have been working hard on standards for residential home care, but I do feel that HSE ought to have considered home care quality too. If you wonder why they have concentrated on nursing home care, try looking up Lea’s Cross on Google.

Even more worrying, Deputy Aine Brady, Minister for Older People, was interviewed. She did not seem very perturbed, at the findings of the report, and expressed doubt about the need for more regulation in the sector. She is one of our hereditary TDs, the daughter of one TD, sister of two others, and married to a fourth.

Kate Hartigan, another assistant national director in HSE, was interviewed after the program on Pat Kenny’s show. She is talking about future regulation, building on their work on defining care packages. They have taken some steps to deal with the companies covered by the program, but it would seem little more has been done. Sara Burke did a nice hatchet job on the staggeringly incoherent policy which has lead us to this mess. The goal of the policy was to drive down the costs, and this has worked. The quality has not been assessed yet. There is still a large amount of variation between counties in service provision.

Can we change this? It will cost money to do it.

Funding Irish Universities

The perennial issue of funding third level has raised its ugly head, again. For non-locals, the situation is, first we spend rather little on tertiary education overall, by OECD standards (1.2% of GDP, compared with a median of 1.5% of GDP), and most of our universities are in significant financial difficulty. Third level fees were abolished, for Irish citizens, in 1996, with the stated aim of improving access to third level for students from poorer families. Over the las few years universities have raised student registration fees, originally intended to cover student services, from around €300 to around €1500, and it is now proposed to double this fee.

The effects of the earlier abolition of fees have recently been analysed, and the author (Kevin Denny from UCD) concluded that the abolition of fees had no effect on access for poorer students because :-

  1. There was (& still is) excess demand for places: there is a shortage of places not students.
  2. The fee reduction benefitted well-off students, low income ones would have been exempt.
  3. Most importantly: the paper shows that it’s how students do in the Leaving that matters. The fact that the low income kids do worse in the Leaving is why they are less likely to progress. Changing fees didn’t change that.
  4. Kevin Denny Behavioural economics blog May 2010

In the light of this, and our rolling financial crisis, its being suggested that we double ‘registration fees’ to €3000 for everyone (FF), bring in a graduate contribution, based closely on the Australian HECS, for new graduates earning above a certain level (FG), and do nothing much (Labour). I have reservations about all of these.

The FF proposal is to further increase the already stratospheric ‘registration fees’ which pay for ‘student services’, like library books. This will hit families just above the income threshold for grants very hard, and is not likely to raise much money. It currently brings in €60 million (this is my guess, 80,000 students, half of whom pay, €1,500 each), so doubling it would get you €120 million, while the HEA, which largely funds the third level sector, spent €1.5 billion in 2007.

The Labour proposal neither addresses the real funding crisis in third level, nor does it do anything to f ix the holes in our budget deficit, so I’ll leave it at that.

The FG proposal is more interesting. Its based closely on the Australian HECS system. In brief, they propose that new graduates should pay back one third of the cost of their education in stages, through the PRSI system, once they reach certain earning thresholds. Existing graduates would make no contribution. This is intended to raise about a quarter of the costs of third level education (€500m out of €1.8 billion).

I can see some problems with this. First, it’s not enough.The amount they propose to raise will not fix the problems of the third level sector. Second it will take a long time, up to ten years, before any substantial sums of money are raised, as the graduates have to get jobs, and move up their pay scales. Third, it’s not fair, the burden of funding third level falls on current and future undergraduates, and those who had free education, from 1996 to 2010, pay nothing. Fourth, the system will be very complex to administer, as an individual will have to have an individual account, which is paid down over time. Both the UK and the Australian experience suggest that this will be very expensive, and cause a range of social problems. Both countries fare poorly in the recent report on Global Higher Education Rankings 2010 – Affordability and Accessibility in Comparative Perspective.

Is there another way? Let us adopt the basic idea that those who benefit from higher education should pay for it, and those who do not, should not. The economic return to higher education accrues both to the individual graduate and to the society as a whole, so there is a case for subsidy to higher education. However, the salary gap between graduates and non-graduates is significant, so graduates ought to pay more for higher education than non-graduates. One way to achieve this is to levy graduates. It’s not too hard to identify graduates. Many jobs are entirely graduate. Also, graduates do not become non-graduates, so it is only necessary to record the graduate status once. A flat levy, of 1% or less, on all graduates, from Irish universities, or elsewhere, whose total income is above a modest level, could pay for third level education. Such a levy could easily be collected through the tax system, and would bring in the money quickly.

Worth considering?

Claiming our Future

10 am We’re meeting up, a thousand people from all over Ireland in the RDS Industry Hall. This is a space more familiar to me from the Horse Shows of my youth. On my table, we have, among others, a union secretary (who was my contemporary in TCD back in the ’70s) , a Jesuit community activist, a worker for older people’s rights, a youth worker, and an artist. The Twitter link is #cof3010

10:30 We’ve started by doing a values exercise. We were asked to select five values from a list provided, and to suggest one more. We picked Care, Equality, Environmental sustainability, Solidarity and Accountability. We added ‘public conversation’ to the list. All of these will be added up across all the tables, and the final choices put up.

1:05 Key values identified from the voting system were :-

  • Equality
  • Environment
  • Accountability
  • Participation
  • Solidarity

12:15 Now we’re listening to Mary Coughlan, (not the Tanaiste, the singer) doing ‘My Land is too Green‘, and the ‘Magdalene Laundry‘. It’s going down very well. She’s a great performer.

12:30 The elephant in the room – what we all refuse to see. The alternatives that are possible. Myths that society must be run for the markets. What are the policy alternatives? Policy choices based on this document. Looking for policy option that can be implemented over 5 years, that might be transformative, and can be popularized.

12:40 Working on Section 2a Economy and Environment. Our priorities are :-

  1. Change the current development model and define and measure
    progress in a balanced way that stresses economic security and social
    and environmental sustainability.
  2. Regulate banking to change the culture from one of speculative banking
    to one where currently state-owned banks and new local banking models
    focus on guaranteeing credit to local enterprises and communities.

1pm Working on Section 2b Income, Wealth and Work. We need to look widely at models from other countries, e.g. Iceland, other Scandinavian countries, Wales, Scotland. How can we achieve better income equality? Property tax reliefs, pension tax relief, are all possible targets. Is equality or jobs the priority? Both are important. Equality could start at the next budget, and there is a lot of evidence that increasing equality increases many other desirable features of society. following discussion, our priorities were:-

  1. Prioritise high levels of decent employment with a stimulus package to
    maximize job creation in a green/social economy.
  2. Achieve greater income equality and reduce poverty through wage, tax
    and income policies that support maximum and minimum income
    thresholds.

1:25 pm Lunch! Lots of choices outside in the grounds. A lovely day too.

2:30 Back from lunch – Votes from section 2a and 2b were
Economy and environment

  1. Change the current development model and define and measure
    progress in a balanced way that stresses economic security and social
    and environmental sustainability.
  2. Prioritise a legally binding national sustainable development strategy that
    caps resource use, reduces greenhouse gas emissions and implements
    measures to protect our life support systems.

Income, Wealth and Work

  1. Achieve greater income equality and reduce poverty through wage, tax
    and income policies that support maximum and minimum income
    thresholds.
  2. Prioritise high levels of decent employment with a stimulus package to
    maximize job creation in a green/social economy.

2:45 Working on Section 3a Governance – we felt that it was critical to “reform representative political institutions to enhance accountability, equality, capacity, and efficiency of national and local decision makers”. Without this little joy could be expected.

3:15 Section 3b Access to public services, and public sector renewal. We had a long discussion about importance, or otherwise, of fixing the public service – “Make efficiency, integration, and equality the goals of public service reform”. It was felt that specific service delivery policies should have priority. I’m not sure I agree.

4:10 Votes on Section 3a
Governance

  1. Reform representative political institutions to enhance accountability,
    equality, capacity, and efficiency of national and local decision makers.
  2. Develop participatory and deliberative forms of citizens’ engagement in
    public governance and enhance democratic participation by fostering the
    advocacy role of civil society organizations, civics and ethics education in
    all school levels and a diverse media.

4:10 Votes on Section 3b Access to Services and Public Sector Renewal
· Make efficiency, integration, and equality the goals of public service
reform.

  1. Provide universal access to quality healthcare, childcare and services for
    older people.
  2. Invest in equality in access to and participation in all levels of education
    (preschool to university).

3:30 Listening to a rap group – least said , soonest mended.

3:45 Feedback time – show of colored cards – green red and yellow. Do you want to work together? Result – a forest of green cards!

3:50 Ideas for action

  • Sustainable Ireland, following the natural steps program from Sweden
  • Singing revolution, use music to sing the protest, record and spread it widely.
  • Charter for Ireland, on the liens of Charter 77
  • Progressive think tank
  • Virtual network of people and resources

4:20 Shaz Oye singing for us. Great voice, solo singer, gospel style, also sings with guitar. Very lively, very strong voice, very moving. Finished with ‘Talking about a Revolution‘, which can come off a sad cliche, but worked well with her voice.

4:30 Wrap up – Set of values chosen. Policy options identified. Infrastructure set up, on-line local, regional and national. Actions will continue. Each of us has written a postcard, addressed to us, with a stated action to be done over the next month. These will be posted out to us in a month. Build ‘Claiming our future’ independent and self-reliant. Make today a turning point for Ireland.

4:45 – Gloria sing for us. A great way to wrap up the day.

5:00 We all go home.

Futures of Nursing


The US NAP have just published a report on the ‘Future of Nursing’. I’ve only skimmed it, but I’m impressed enough that I’ve ordered a copy. The US are facing exactly the same types of problem that we face, albeit in an even more dysfunctional system.
The authors note the accumulating evidence that nurses have a vital role in delivering care which is of high quality, accessible, and provides value for money.

They have 4 key messages :-

  1. Nurses should practice to the full extent of their education and training.
  2. Nurses should achieve higher levels of education and training through an improved education system that promotes seamless academic progression.
  3. Nurses should be full partners, with physicians and other health professionals, in redesigning health care in the United States.
  4. Effective workforce planning and policy making require better data collection and an improved information infrastructure.

We need to pay attention. The whole report is available from the link above, (registration is required), and ought to be compulsory reading for us all.

The real price of US healthcare

There’s a new paper published at Health Affairs which gives the final lie to the general thrust of Irish Government health policy. The heart of the actual policy is the maximization of private health care. The huge expansion of private health care, largely funded by tax breaks, has succeeded. We now have a big private sector, which, according to the CEO of the VHI, “has excess capacity [which] it will take a few years to be utilised. We do not need any more new hospitals. I don’t think we can fund it. I can’t see the business rationale for me as procurer of services to add to that capacity. It doesn’t make sense for us and we are entitled as a procurer who we contract with. Our view is that there needs to be a two- to three-year moratorium on expansion or new facilities.” (Sunday Tribune September 5th).

One might fairly object that this is not stated policy. Stated policy is [still!] the 2001 ‘Quality and Fairness, a health system for you’. However, this is not being implemented, or at least, not so as you would notice, so I prefer to stick with what actually gets done.

So, what are the likely consequences of these policies? Well, the problems of private health care are quite well understood. There’s fair evidence, from other countries, of failures in cost-control, shifting of risks, and costs, to the public sector, and fragmentation of care. The basic inequities in our system are well established. These policies will likely make the problems worse.

There;s new data from the US, published on the 7th. which is very relevant to this discussion. Muenig and Glied examine US 15 year survival data for middle-aged and older people, to answer the question “Is the US health system at least partly to blame for this deterioration in international rankings for life expectancy and medical costs? Or can the declines be better explained by statistical, demographic, behavioral, and social factors?” The short answer, is yes, for the longer answer read the paper.

HSE needs a programme of rapid, focused cost savings

Brian Kenny kindly invited me to give a talk to the IHCA AGM in Adare, Co. Limerick. I spoke about running the health services through a recession. I also wrote a piece which appeared in the Irish Times, on the same day, Saturday 2nd October. My original slides are here as a 6MB OpenOffice Impress file, and, if you insist, here, as a 6 MB Powerpoint file and here as an 9 MB Adobe pdf.

HSE needs a programme of rapid, focused cost savings

“IRELAND IS experiencing its worst economic crisis since the Great Depression of the 1930s. What are the implications for the public health service of the recent budget cuts and the likely ones to come?

The HSE has had rising budgets since 1995. This rise has partly gone to higher salaries, and partly to playing catch-up from the severe under-investment before then. The HSE will lose about €600 million this year, and is likely to lose as much again, or more, in 2011 and again in 2012.

These cuts are hitting frontline services quite disproportionately, for several reasons. First, many services are delivered by temporary staff, or low-paid staff on short-term contracts. Examples include home helps, some hospital nurses, some social workers, and others. Second, many frontline staff grades are young, and so have higher staff turnover for social reasons. Again, this affects key staff like nurses, community welfare officers, psychologists and social workers. Finally, some frontline services have been, effectively, discontinued, non-emergency dental services being an example. Given another two years of this, our health services will be badly damaged. What can we do to avoid this?

The various problems of the HSE have been thoroughly discussed in the media. It is well known that we have unaccountable services of variable quality. We have a two-tier health service with a vicious bias against poorer people. Our GP services are laughably underdeveloped. We have a large, unplanned, and unsustainable private health sector, which is destabilising the public services and the insurers. Services for adult and child mental health are a national scandal. Services for disability and long-term care are equally poorly developed. Ours is neither a quality nor a fair health service.

There are glimmers of hope. The concentration of cancer services in eight centres has worked well. Drug costs are falling, a little. New clinical pathways are being developed in the acute hospital sector. The quality of HSE management has improved.

There are less cheery signs. The primary care strategy is, more or less, dead. The HSE still has 11 financial systems, which are not mutually compatible. There is still intense confusion of roles and lines of responsibility within the HSE. The co-location of private hospitals consumes scarce HSE management resources.

So, what can be done now to avoid serious harm to patients over the next two or three years? In my view, the HSE needs a better financial structure and a rapid programme of focused cost savings.

The HSE’s financial system was described by the Minister for Health’s expert group on resource allocation as “fail[ing] to meet most of the guiding principles that [we] would consider essential to have a system that is fit for purpose”. There are now two detailed reports on this, one from my colleagues and me and one from the resource allocation group chaired by Frances Ruane. These reports agree in detail and complement each other. We need action on these, not further prevarication.

There are some obvious areas where a lot of money can be saved quickly – drugs, acute hospitals and private healthcare. For drugs significant savings have already been made and more are possible. Examples include the use of restricted drug lists; requiring high levels of generic prescribing; payment for the care of long-term illnesses (eg diabetes) based on following standard protocols of care; setting restrictive budgets for very costly new drugs; and requiring proof of cost-effectiveness for these drugs before they will be reimbursed. All of this could save as much as one-fifth of the total public drugs bill, about €240 million.

Improving acute hospital efficiency is certainly possible. A study of the economies, and the diseconomies, of scale in our system, should guide future decisions on hospital size and location. Measuring the efficiency of hospitals against their peers would be a powerful motivation for change. Requiring hospitals, as well as other service providers, to make more use of shared purchasing and shared services could save a lot of money. Setting up a unified management and budget structure within each of the eight new hospital networks would be a major step forward. I do not know how much this might save.

A decision to stop subsidising private healthcare would save a lot of money. Private healthcare in Ireland receives very large annual subsidies. These include €260 million in tax relief on insurance premiums; €90 million for the National Treatment Purchase Fund; €50 million to €100 million in the subsidy for private patients in public hospitals; and millions more in payments from insurers that never get collected. The tax relief on new buildings costs tens of millions a year at least; the costs of the co-location project are unknown, but might be as much as another €30 million a year. At least €20 million is the cost of training for staff from public institutions. Personal indemnity insurance for private practice by consultants and the two private maternity hospitals is an unknown cost but might be another €20 million annually. The opportunity cost of having consultants working off site is not known, but is probably high. This all costs at least €500 million a year and perhaps as much as €700 million.

A final source of income for the HSE is consultants’ fees. Private health insurance premium income is probably €1.4 billion this year. At least €350 million is paid to people who also hold public contracts. This could be levied directly by their employers, say at a rate of 50 per cent per year, bringing in a very useful €175 million a year.

These are drastic actions, but we live in very hard times. These measures would not be enough to avoid all the problems, but they would be a start. If the State does not do something radical, all health service users will suffer. These are, largely, the elderly, the disabled, the poor and the sick. While services will (still) be inadequate, at least they will be evenly inadequate. Is there any other hope?

Yes there is. It lies in the people who work in our truly awful healthcare system; the people who make it work, day in, day out, despite the problems; the people who do their best for their patients morning, noon and night. The film-maker Alan Gilsenan, writing in this paper on Tuesday, said of a nursing home in central Dublin, “Real care does not reside in the building or its facilities, but rather in the spirit of the people within.” The same is true of the HSE.”

Using R in research education

I’m at the UserR! 2010 conference at NIST in Gaithersburg, Maryland. This is the main annual event for R users. there have been whole series of presentations on using R in education. The full program lists the Pedagogic talks (3 sessions, and 9 talks, on the first day).
What I’ve seen so far is great work on training people in data analysis, in statistics and (to some extent) in probability, The work is really good, and I have lots of new ideas. What’s been lacking, and what I need to think about more, is the other part. There are at least three other elements,

  1. asking intelligent questions, that is questions that are well enough specified to be answered, and well enough considered to actually matter.
  2. using research information, and clinical information, to support good clinical decisions
  3. data cleaning, data exploration,

Any thoughts?

Abolishing Fas?

Deputy Ruairi Quinn has called for Fas to be abolished and its budget diverted to the IT sector. While I share his frustration with the running of Fas, it is, I believe, a serious mistake to think that it can easily be replaced.

Just as the IT’s and the universities have different and complementary roles, so Fas fills a vital slot in the educational landscape. No-one else has the same combination of guidance, staged training, and
technical options. We need it, we need it to work well, accountably and efficiently, and we need it more than ever now as the economy crumbles. The only chance for many people to get the skills they need is Fas, or something very like it.

TD’s need to hold Fas, and the rest of the Education sector, accountable for delivery, and efficiency. Soundbite policies got us into the present mess, but will not suffice to get us out of it.
(Irish Times Saturday Sept 4th)

John Nelder has died

Prof. John Nelder, one of the more remarkable British statisticians, has died, at the age of 85.

I never had the good fortune to meet him, but his work had a great influence on me. McCullagh and Nelder, Generalized Linear Models, was my first technical statistics book, as an epidemiology PhD student, and I used Genstat, which he originated, throughout my PhD. His clear explanations have stayed with me, and I am proud to recycle them to my own students (with attribution!). Genstat also showed me a way past the more ‘black box’ approach of SPSS and SAS, to the interactive data analysis, exemplified by R. I’d like to thank him, and offer my condolences to his family.