Independence and inclusion will mean something different for every child and young person with CP, and may change as they move towards adulthood.

For some, independence may mean being able to physically do as much as possible by themselves, and for others, independence is feeling in control or in charge of the things happening in their lives.

For all of us, inclusion means treating every child, young person and adult as a valuable and capable member of society, regardless of differences. They have the right to live free from unnecessary restrictions, make choices about their life and have those choices respected, and to feel included and listened to.

For all children and young people with CP, barriers need to be overcome so they can participate in meaningful ways, including at school and in the community.

They will be supported by their family, friends and healthcare team to set goals and plan their life. It is only natural for family members and carers to sometimes be overprotective, however this can cause the child or young person with CP, who is looking to have a sense of independence and be included, to feel their voice is not being heard, or that they are not being given the chance to make decisions.

If you would like some advice about how to avoid this, talk to your child or young person’s healthcare team. You may be referred to a social worker, occupational therapist or diversional and recreation therapist, who can assess your child or young person, and work with them and you to develop a plan that supports their independence and inclusion.

The plan will include:

• their interests, hobbies and preferences
• recommending various activities based on their capacity for taking part
• minimising their disability by teaching them adaptive strategies
• motivating them to take part in activities with encouragement and support
• modifying equipment and procedures to promote inclusion
• expanding their ability to socialise and make friends
• enhancing their self-confidence
• helping them develop interests that they enjoy.

Sometimes, the desire to be independent can make asking for help more difficult. It is worth remembering that:

• children and young people with CP who want to do everything themselves, without support, often find it harder to cope with changes, and experience more soreness and fatigue than those who accept help
• wear and tear on the body generally appears to be less in those who accept help, compared to those who don’t
• those who accept help often have more energy to do the things they enjoy and to socialise.

As young people approach adulthood, they will experience a number of life changes, and start thinking about career and work goals, independent living and intimate relationships, as well as moving from paediatric health services to the adult health system.

There are no automatic referrals for adult services after a young person has left paediatric care, so it’s important to have a good relationship with a trusted GP to provide a link from one to the other.

There may also be a range of other things happening for your child or young person that you would like to receive support for. This could include counselling, financial and legal advice, or advocacy.

Advocacy agencies can help children and young people with CP, and their families, to find their voice, to be independent, to choose what they want, and to take steps to achieve their goals.

For a list of agencies that can help with advocacy and legal support, visit the Disability Advocacy Finder on the Ask Izzy website.

Some of this information is provided and produced courtesy of The Future Thinking Project, Ability WA.