Skip to 0 minutes and 10 secondsYETNEBERSH: Presenting the issue of disability as a societal construct is the basic thing to start with. If societies understand that it's not only about some individuals or it's not only about the functional limitation, or restriction that the person has, then that would make the issue of disability owned by everybody.

Skip to 0 minutes and 31 secondsCAROLINE: Just getting around facilities, you know, the changing places, toilets, disabled access in playgrounds for children - so many of them if the kids are in a wheelchair can't actually access may play activities. And they are quite isolated in a lot of the groups that are put on for children. So we used to run our own. But you kind of need to get to a good place to be able to do that. So I think there isn't that much for the young children.

Skip to 1 minute and 0 secondsTRACEY: Children learn by doing, and they learn through play, and they learn through watching. And so if they are learning and playing and watching with others and their peers, they start to progress. And they start to discover new things. And they start to work their way around solutions and difficulties and problems that they might not have had if they were on their own.

Skip to 1 minute and 22 secondsSHEILA: I think a fundamental part of life for all of us is that we need to belong. We need to know where we belong. And if you feel that you don't belong, that you are not wanted in some way, that people don't want to know you. I mean, imagine what that might feel like. It's kind of, not really very nice. So trying to work out how to help somebody really belong, I think, has to start fairly early on. So imagine that you can't go to the same nursery group as your brothers and sisters because they've decided they won't take a disabled child. It's kind of quite hard. It's hard for mum.

Skip to 2 minutes and 6 secondsTOM SHAKESPEARE: So I was really lucky. 50 years ago I went to Beach Green, which was an inclusive nursery school. It was really ahead of its time. And there were all sorts of kids there was spina bifida and achondroplasia, and lots of cerebral palsy, lots of conditions. We were all included, all equal. It didn't matter. And that sends a really good message to mum and dad.

Inclusion and participation

The United Nations Convention on the Rights of the Child and the United Nations Convention on the Rights of Persons with Disabilities recognise the fundamental human rights of children with developmental disabilities, including their right to healthcare, education, social protection and community participation, regardless of age, gender, ethnicity, poverty or impairment.1,2

Unfortunately, many children (and adults) with developmental disabilities are excluded from school, employment, healthcare and other services, due to discrimination, inaccessibility or lack of provision.3

For the remainder of the week, we will be considering various examples of a child’s rights, and discuss how healthcare professionals can help children and their families advocate for these rights.

Inclusion and Participation

Underpinning all of these fundamental human rights are the principles of inclusion and participation. Full and effective inclusion and participation means that society is organised to enable all people, including children with developmental disabilities, to take part fully in all aspects of life. Put simply, inclusion means removing barriers. Inclusion allows children with developmental disabilities to participate in all activities on an equal basis with others, and to be valued members of society.3

Two boys leaning over a school desk as they write something together © CBM

Inclusion

Inclusion means a child’s environment is accessible and free from physical and social barriers. An inclusive society promotes the acceptance of children with developmental disabilities and demands that society is accessible to these children.3,4

Inclusion requires accessibility improvements to healthcare services, schools, public spaces and information. For example, buildings should be physically accessible (including bathrooms) and well-lit to assist children with visual impairments. Teachers should be welcoming of disabled children and learning materials should be accessible for all.

A first step may be to change opinion about what children with developmental disabilities can do and achieve. One way to change attitudes is by coming more into contact with children with disabilities, for instance, by integrating support for children with developmental disabilities into mainstream schools or hiring people with disabilities as teachers or healthcare professionals. The media can also play an important role by featuring characters with disabilities (an example from the UK).

Inclusive societies require more than just attitudinal and environmental changes. They require inclusive policies, legislations and practices at national level, so the rights of children with developmental disabilities and their families are protected.4

Two girls sitting side by side on a swing and smiling. A boy is standing next to the swing. © Holt International

Participation

Inclusion, or the removal of barriers, supports the participation of children with developmental disabilities. Participation includes their meaningful involvement in any decision-making process, the opportunity to voice their opinion and have this opinion be heard, and the possibility to advocate for their rights when participation is restricted.

However, there is often a reluctance to recognise the competence of children with developmental disabilities to participate in decision-making. As we have discussed previously in the course, children and adolescents with developmental disabilities often receive little to no information about health, life skills and important topics around the transition to adulthood, such as sexuality and employment.3

Benefits of inclusion and participation

Through inclusion and participation:

  • Children with developmental disabilities have the opportunity to achieve their rights and fulfil their potential, improving their confidence, self-image and relationships.
  • Inclusive societies promote respect, trust and cooperation, for the betterment of all.
  • Children and their families are active decision-makers, and their needs and concerns can become clearer, allowing for more effective solutions.
  • Children learn from one another. By including children with developmental disabilities in mainstream activities, they have the opportunity to learn from the experiences of others, and vice versa.

Twin-track approach

A graphic of the twin-track approach to disability inclusive development. At the top of the graphic, we see a boy with crutches (one of which is broken and is on the ground) approaching steps with 'Physical Barriers' written on. Three figures stand at top of stairs with angry faces and hands out to block him. Signs read society and participation. A book is on the floor with the word education. One man is holding a hammer with the word jobs written on. Two railway tracks run down from this image at the top. The first reads the title 'Empowerment', with boxes reading disability specific, support services, political empowerment and capacity development. The second shows the title 'Mainstreaming disability', with boxes reading attitudes, services and legislation. At the bottom, an image shows the boy in a wheelchair going up a ramp which reads 'Access'. The three people are now smiling with open arms. Signs read society for all and full participation. The book that reads education is now being offered to the boy, as is the hammer with the word jobs written on. © CBM

When discussing inclusion and participation, it is important to remember the twin-track approach. Children with developmental disabilities need to be included in mainstream services, policies, legislation and community activities, but they also need targeted, disability-specific programmes and interventions. The combination of these two tracks helps sustainably develop inclusive societies and supports the quality of life of children with developmental disabilities.

Role of the healthcare professional

Throughout this course, we have discussed how to improve access to healthcare services for children with developmental disabilities – their fundamental human right.

But how can a healthcare professional help children and their families realise their other rights, such as inclusive education?

As we said in the last step, healthcare professionals are not miracle workers and advocating for a child’s other rights, as well as providing healthcare, may appear impossible. Yet it is vital not to stop at healthcare, but to consider a child’s needs holistically.

Children with developmental disabilities are some of the most vulnerable individuals in the world, and healthcare professionals are uniquely placed to advocate for their rights and empower families. Through a collaborative, participatory approach, healthcare professionals, children and families can identify long-term targets, aspirations and goals, such as going to school, having friends, finding a career, becoming a parent. These goals can form the basis of ongoing strategies and inform suitable referral pathways to other key services that will help children with developmental disabilities realise community inclusion and participation. For instance, a healthcare professional work can with teachers to ensure that children with developmental disabilities can attend schools.

In the next steps, we will look at some examples of children’s rights and areas of inclusion.

Before we do, we want to ask what concrete steps healthcare professionals can take to promote inclusion and participation within our societies?

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This video is from the free online course:

Integrated Healthcare for Children with Developmental Disabilities

London School of Hygiene & Tropical Medicine