Children in cages

child in cageThere are reports that children with disabilities have been put in cages in Canberra and Bendigo. Some advocates claim this is common practice. Not surprisingly there has been international media interest and significant community concern.  Investigations are underway in the ACT and Victoria. What is going on?

Some children with a disability engage in behaviour that is difficult for parents and teachers to manage. This includes throwing objects, hitting, biting, kicking, scratching and hair pulling. Children often scream, yell and spit when this happening. Sometimes a child will harm themselves for by, for example, butting their head against hard objects like a wall or furniture. Other children run away.  When these behaviours are frequent and sustained they place both the child and others at significant risk of harm.

In class rooms behaviour like this is disruptive and stressful for teachers. Not surprisingly they are keen to have effective ways of managing them. Options include restraining or removing the child to a secure setting, or removing the other children. But it is easy to misuse restraint and seclusion, including putting children in cages.

Generally children with disabilities engage in behaviour teachers and parents see as problematic for a reason. Often it is to avoid settings or activities, including particular teaching activities, going to bed, eating certain food and so on. The other major reason is to get attention. Children with limited speech and social skills are often ignored until they engage in behaviour that disrupts other activity around them. So behaviour seen as a problem by teachers and parents is often functional for the child.

The other important point about behaviours teachers and parents find difficult is that they develop over time as result of the child’s repeated experience. The behaviour of a 1o year old with an intellectual disability who repeatedly hits her head against walls and furniture hard enough to cause bruising and bleeding when she is left alone has a history and a context.

Behaviour like this often begins in a mild form years earlier and progressively escalates as parents and teachers try to ignore or suppress it. When people see older children (and adults) with disabilities engage in extreme behaviour to get what they want they often find it hard to understand that these behaviours were learned as a result of repeated experience over extended periods of time.

Teaching children with disabilities a better way to get their needs met often takes sustained effort using carefully designed strategies. Restraint and seclusion can be part of these programs, but used on their own they are often designed to restore order not teach better ways of getting what they want. That is useful for teachers who want to manage their classrooms, but it doesn’t teach the child the skills they need.

There are well developed effective programs to deal with problem behaviour and teach new skills.  But it takes considerable expertise and experience to design and implement them when extreme behaviours are well entrenched. Often teachers don’t have these skills. Then they need sustained support and assistance.

Because restraint and seclusion are intrusive and can be misused, they should only be used in schools with expert supervision as part of well designed programs that teach children more appropriate behaviour as well. But often only minimal support and assistance such as online checklists and guidelines is available.

Schools are then left to try to deal with difficult and stressful behaviour without adequate support and assistance. Inappropriate strategies like the use of cages are an unfortunate end point  as teachers search around for something that will work.

It would be a shame if all the attention was put on banning cages (as they should be).  Better systems and support to help teachers work with children with behaviours they find challenging need to be put in place as well.

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Dying Well

Our report Dying Well argued that Australians don’t die the way they would like to. Most people would prefer to die at home with the support of family and friends and good quality support services. Most die in hospital or nursing homes. Often death is an isolating, depersonalised experience, in clinical settings visited by distraught and alienated family and friends. In many cases treatment continues when it is pointless. Not surprisingly, there is now strong support for people having the right to determine the circumstances of their own death, including active assistance when they choose it.

We place an unrealistic faith in health care to keep us alive – if only for a little longer. We don’t discuss, plan or prepare for death any more. Our report argued we should promote public discussion of dying; prompt conversations about our preferences for treatment and support when death is immanent, support advance care plans to make sure our preferences are implemented, and significantly increase support for people to die at home when that is their preference. These changes would be cost neutral.

Policy change and implementation to improve the quality of death in Australia is a challenge. Our report generated significant media and stakeholder attention. We presented at a number of forums, appeared before Federal and State parliamentary committees, participated in policy forums and workshops and briefed Federal and State Ministers and Shadow Ministers. Incremental changes have emerged, particularly in support for the implementation of advance care plans and greater support for home based palliative care. There is enormous interest but many issues, including the right to die when we choose to, remain unresolved.

Trends in health policy

Health Affairs lists five key trends in health for 2015 for the United States: (1) getting data to transfer easily across providers, (2) tougher negotiations on high cost speciality drugs, (3) innovation to reduce costs and improve services for people with complex chronic conditions, (4) greater transparency on costs and performance through publication of data, and (5) a move away from fee for individual services and toward bundling services for complete episodes of care.

National trends are harder to spot in Australia, but the following are contenders: (1) shifting hospital costs to the States to force negotiation on revenue sharing options, (2) innovation in funding and organisation to reduce avoidable hospital admissions through the introduction of Primary Health Networks and reforms to Medicare funding, (3) efficiency and quality improvements in private hospitals through private health insurance funding reforms, and (4) changes to price negotiation processes to reduce the cost of the pharmaceutical benefits scheme.