• Opinion
  • September 30, 2019
  • 10 minutes
  • 0

Children with disabilities deserve a life outside institutions

Opinion: Not all children are included in the push towards deinstitutionalisation

This article is written by Milan Šveřepa, director of Inclusion Europe. For more like this, see our early childhood newsfeed. 


There is no doubt that institutionalisation does tremendous damage to children’s health and development.

Luckily, there has been significant progress to move away from institutionalisation, and instead support families to avoid separation by developing foster care and other alternatives.

Unfortunately, this somehow seems not to apply to children with disabilities.

In many countries, children with disabilities continue to be institutionalised and today represent the majority of children remaining in institutions.

“In a number of European States, children with disabilities are disproportionately more likely to be placed in institutional care than their non-disabled peers and appear far less likely to benefit from efforts to affect a transition from institutional to family-based care,“ writes The Academic Network of European Disability Experts in their latest report.

The heart of the problem

There are no doubt systemic issues and stereotypes at play, which contribute to the continuous segregation of children with disabilities. The fact that children with disabilities are left behind is compounded by systemic challenges.

The current funding mechanisms and mindset is very well equipped for creating — and to a certain extent replicating  — ”examples of good practice“.

While these are in themselves valuable improvements, their impact is limited as long as the foundation of the traditional child-protection system remains intact. In many countries, the legal framework is geared towards institutionalised solutions, and funding at the national level continues to favour institutions rather than the alternatives. In Czechia, for example, public spending on family support represents only 10% of the money going into “mainstream child protection”.

All the good practices and innovative services are essentially exceptions, out-of-the ordinary situations created despite the prevalent legal and funding environment.

Therein lies the main challenge in making the next step — to turn the cases that are currently the exceptions into the rules. For children with disabilities, this means implementing structural changes at each key stage of their lives.

Early support

If we are to do this, Identifying the needs and providing support to families and children early, before children are taken away and placed in institutions becomes the only viable option.

General support systems are set up with a sort of average child in mind: Parents of children with a disability often find that general knowledge is not enough to help them out with very specific questions that arise in their situation. And even If this support is available, it’s often not offered at home with the parents but only in segregated special facilities.

Policymakers also need to take into account that children do not remain children forever

Early intervention should start right after birth if possible. The support should be individualised, structured, provided on a long-term basis — not just for a few months but up until the child goes to school — and provided at home.

The effects of early intervention have been proven: for example, the “decline in intellectual development that occurs after the first 12-18 months for children with Down syndrome can be prevented almost entirely“. Early intention also leads to better access to mainstream schools, higher employment as the child reached adulthood, better health and better relationships, as well as better welfare for parents and less institutionalisation.

Education

The policy of keeping children out of institutions and providing support at an early age must be followed by quality education. Despite this, the current policy of segregation, whereby disabled children are placed in special schools or even receive no education at all, hampers further progress both for individual children and for the system to change.

It is critical for children to go to school with other children from their neighbourhood, as it makes it possible for them to form important and lasting relationships.

It is beneficial to children and adults with or without disabilities alike, to foster “soft“ skills such as empathy and communication. And it equips children with disabilities with skills necessary to succeed later in life. And on top of that, it reduces the risk of further segregation in later stages of life.

Employment

Policymakers also need to take into account that children do not remain children forever. Sooner or later, they become adults and enter the labour market.

In many countries, the drop in the number of institutionalised children is simply due to these children growing older, and being transferred to institutions for adults

If we limit their chances of success by failing to help them develop properly, by segregating them from society and by not providing proper education, we set them on a path towards unemployment, with no jobs (or only stereotypical, non-paid activities) and with life-long dependency on “care“.

Employment is crucial for developing new roles in life, and in sustaining social integration. It is also crucial in demonstrating that people with disabilities can — of course — contribute just like anyone else. Providing proper education aimed at succeeding on the open labour market is key, as is making changes to how support to employment is provided.

Institutionalisation later in life

Unless the whole system is changed, we are faced with a situation where all the effort and support invested in helping children develop ultimately come to nothing, as they are placed in institutions in their adult life.

This institutionalisation can happen once a person reaches early adulthood. In many countries, the drop in the number of institutionalised children is simply due to these children growing older, and being transferred to institutions for adults.

It can also happens later in adult life, when the parents or siblings who were providing support are unable to continue doing it — and because of the lack of community-based support, the adult with disabilities will be placed in an institution anyway. The actual placement in an institutions, as well as the dread of it always hanging over the heads of the families, have devastating effects on all involved.

Deinstitutionalisation of child care is the right and only way forward.

It is essential that these efforts include children with disabilities. There must be a change in the way we think about it: from developing individual “good practices“ into changing the whole system where the good practice exceptions are the rule.

Such a system would be based on early intervention to help children with disabilities develop fully. It would also include proper education to help them learn valuable skills and integrate into society, and it would provide access to quality employment and community-based adult care. Because children do not stay children forever. — Milan Šveřepa

Milan Šveřepa is director of Inclusion Europe. He is also co-chair of the European expert group on transition from institutional to community-based care. You can follow him on Twitter @misver.

(Picture credit: Death to the stock photo)

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