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Inclusion of people with cerebral palsy


Drafted by Teagan Herron & George Petrusev, Second Year Occupational Therapy students at Western Sydney University, 2021. Reviewed by Dr Nicole Sharp, Director and Occupational therapist at Believe and Become Pty Ltd, Adjunct Fellow at Western Sydney University, 2022.

Aim

  • Our aim is to provide information and resources to support community volunteering organisations to implement inclusive practices for volunteers with cerebral palsy (CP). There are many benefits to an inclusive workplace.
  • Inclusive practices can support increased opportunities for people with cerebral palsy, support a diverse workforce and help organisations meet corporate social responsibility expectations.
  • Many of the recommendations included in this resource would also benefit people with various other types of disability. The most important thing is to speak to each volunteer within your organisation about what specific adjustments might assist them to be successful in their role.

Introduction to cerebral palsy

  • Cerebral palsy is a neurological condition caused by an injury to the developing brain (Wilma et al., 2021). It is a physical disability affecting the development of movement, muscle tone, balance, and posture (Wilma et al., 2021).
  • Cerebral palsy is the most common physical disability in childhood
  • 34,000 people are living with CP in Australia, 17 million worldwide
  • 1 in every 700 Australian babies is diagnosed with CP and for most, the cause is unknown. 57% of people with CP are male.   
  • Symptoms include exaggerated reflexes, floppy or rigid limbs and involuntary movements (Wilma et al., 2021).
  • The disability can range from minimal to profound and the impact on daily life is individual to each person (Cerebral Palsy Alliance, 2022).
  • Cerebral palsy is a permanent life-long condition. While the original brain injury is non-progressive, people with CP may experience increasing secondary conditions as they age, including joint dislocations or contractures, osteoarthritis, neuropathy, and chronic pain (Wilma et al., 2021).

Physical implications of cerebral palsy

  • Cerebral palsy is described both by motor type, and by the part/s of the body impacted.
  • Cerebral palsy can affect different parts of the body:
    • Quadriplegia: When both arms and both legs are impacted, as well as often the muscles of the trunk, face and mouth
    • Diplegia: When the legs are most significantly impacted. The arms may be impacted to a lesser extent.
    • Hemiplegia: When one side of the body is impacted, for example the right arm and leg.
  • There are three main types of cerebral palsy, as well as mixed types:
    • Spastic cerebral palsy: This is the most common form affecting 70-80% of people with CP. It presents as tightness and stiffness in the muscles and arises from damage to the motor cortex of the brain.
    • Dyskinetic cerebral palsy: Characterised by involuntary movements, dyskinetic CP affects 6% of people with CP. It arises from damage to the basal ganglia.
    • Ataxic cerebral palsy: Characterised by shaky movements which affect balance and sense of positioning in space. Ataxic cerebral palsy affects 6% of people with CP and is caused by damage to the cerebellum (Cerebral Palsy Alliance, 2022)

Other implications of cerebral palsy

  • In addition to the primary physical disability, many people with CP have additional challenges. For example:
    • 1 in 4 people with CP have significant speech impairments
    • 3 in 4 people with CP experience pain
    • 1 in 4 have epilepsy
    • 1 in 2 have some level of intellectual disability
    • 1 in 10 have a severe vision impairment
    • 1 in 4 experience behaviour and emotional challenges (Novak et al., 2012).

The benefits of including people with cerebral palsy in your organisation

The benefits to your organisation

  • Volunteering involved organisations can benefit from an increased pool of potential volunteers when they are open to making adjustments to include volunteers with diverse backgrounds and abilities.
  • Volunteers with diverse backgrounds and disabilities, including CP, bring with them a huge array of life experience and a level of resilience that will contribute positively to your organisational culture and the broader community.
  • Your organisation’s reputation as an inclusive space for volunteers is also likely to lead to other benefits, including more business. Including volunteers and employees with disabilities will make customers with disabilities feel included and welcome in your organisation.  

The benefits to the broader community

  • The benefits to the broader community include inclusivity, increased social capital and inclusion, and reduced prejudice.
  • When the community is provided opportunities to interact with people with cerebral palsy and other disabilities through volunteering, it facilitates knowledge through communication, breaks down stereotypes and highlight the strengths and capabilities of all people involved (Miller et al., 2002).

The benefits to people with cerebral palsy

  • People with CP have an increased risk of being socially isolated and participate less in their communities than others (Markova, 2018). By creating inclusive volunteering opportunities, individuals with cerebral palsy will be able to increase their community engagement and discover new interests, hobbies, and skills.
  • Research consistently demonstrates both physical and mental health benefits of volunteering.
  • Further, volunteer opportunities will decrease social isolation for adults with cerebral palsy while increasing participation within the community (Kappelides et al., 2018). Increased community participation will provide an increase in self-esteem and confidence (Rak et al., 2014).
  • Through volunteering, individuals will develop a new set of skills. This will offer further benefits in terms of paid employment opportunities and daily living skills and support a sense of pride and purpose (Lindsay et al., 2018).

Why is it important to make reasonable adjustments for volunteers?

  • In addition to accessing the many benefits described above, supporting diversity in your volunteer workforce is a legal responsibility. 
  • In Australia, the law says that people with disabilities should be able to access your goods or services, and your workplace, just like anyone else. This includes as customers, paid employees, and volunteers.
  • If a potential volunteer with a disability is excluded this opportunity based on their disability, they could make a complaint of discrimination under either State or Territory anti-discrimination laws, or the Federal Disability Discrimination Act (1992). You need to make any reasonable adjustments that may be necessary unless they would cause your business ‘unjustifiable hardship’. This includes adjustments for customers, staff, and volunteers.
  • Making your business more accessible and inclusive is also likely to make it safer for customers, staff, and volunteers, and could have a positive effect on your public liability and work health and safety responsibilities.

Making reasonable adjustments for volunteers with cerebral palsy

  • Remember that being inclusive is not just about physical access. There is a lot you can do to improve access and inclusion even if it is not possible for you to make your business completely physically accessible.
  • The following sections contain lots of ideas of ways to increase inclusiveness within your organisation for volunteers with disability including CP. Lots of these ideas may be beneficial for a diverse range of volunteers with disabilities.
  • The best way to see how to include volunteers in ways that will work best for them and for your organisation is to ask them!

Creating a welcoming environment

  • Simple positive gestures of inclusivity can immediately make potential volunteers with CP or other disabilities feel welcome. This could include:
    • A statement committing to inclusiveness on your organisation website
    • Disability affirming language on your website and all signage
    • Symbols and signage highlighting accessible entrances, bathrooms etc
    • Celebrating important events such as International Day of People with Disability on 3rd December, and World Cerebral Palsy Day on 6th October.
  • If needed, consider seeking some training for yourself and your staff to learn more about disability in the workplace.
  • Take the time to listen to people with CP speak, as they may speak more slowly or with less clear speech. Don’t pretend you have understood if you haven’t! Don’t be afraid to ask a person to repeat or rephrase. Some people may prefer to write or use assistive technology to help them communicate.

Using inclusive language

  • If you are making the effort to make your business more inclusive it is also important to make sure your staff and the signage you use is part of that effort. Using appropriate language in relation to all people with disability is a very important sign of respect.
  • Use signage that identifies:
    • ‘Accessible Toilet’ not ‘Disabled Toilet’
    • ‘Accessible Parking’ not ‘Disabled Parking’
    • ‘Accessible Entry’ not ‘Disabled Entry’.
  • Refer to a person with disability rather than a disabled person, or a person with cerebral palsy, not a cerebral palsy person. An exception is for autistic people, who most commonly prefer identity-first language. If you’re not sure – respectfully ask. Most often there is no need to call anyone anything other than their name!
  • Refer to a person who uses a wheelchair rather than someone confined to one
  • Refer to a person who has CP, is blind, or has another type of disability, rather than saying a person suffers from it.

Making practical and logistical adjustments

  • Some volunteers with CP may need some simple practical adjustments to support them in their role. These could include:
    • Flexible working hours
    • Substituting tasks they can’t manage for other tasks that fit their strengths
    • Shorter shifts or more frequent breaks
    • Additional time to move between locations in the workplace
    • Volunteer roles that can be completed virtually from home
    • Not having to take phone calls, for example for people with a speech or hearing impairment.

Making adjustments to the physical environment

  • Some volunteers with milder forms of CP may not need any adjustments to be physical environment to be able to volunteer successfully.
  • Others with CP may need to volunteer in locations that are physically accessible. This could include:
    • Wider doorways, lifts or ramps and spacious hallways and work areas for wheelchair or walking aid access
    • Access to an accessible bathroom
    • Access to a desk that is accessible by a wheelchair
    • Ensuring walkways are clear with no clutter
    • Access to a computer with assistive technology, for example, voice to text software or a modified mouse and keyboard.

Making adjustments to the sensory environment

  • Sensory processing relates to interpreting and responding to all the information gathered through our senses (touch, taste, smell, sound, sight, body movement and position, internal body states) (Papadelis et al., 2018). It is common for individuals with cerebral palsy to have sensory processing difficulties, which can present as hypersensitivity or hyposensitivity (Cerebral Palsy Alliance, 2021).
  • Individuals with hypersensitivity have heightened senses and can be easily overwhelmed by sensory experiences, while hyposensitivity means a person needs more sensory input to help them register information from their senses (Papadelis et al., 2018).
  • The experience of sensory processing for people with cerebral palsy is very individual. Therefore, it is important to ask each individual about their sensory experience and adjustments that may assist them.
  • Sensory processing difficulties may include auditory challenges such as managing loud noise, difficulties managing certain temperatures, vision or lighting challenges, difficulty with various smells, tactile challenges such as with certain textures or pressure on the skin, and challenges with certain movements or body positions.
  • Below are just some examples of sensory adjustments that may assist some people with CP. They are also likely to benefit people with other disabilities such as autism, ADHD, and mental health problems.  
    • Lighting: People with cerebral palsy may be sensitive to lighting, especially if they also have a vision impairment. Where possible natural lighting is the best option and a lamp or dim lighting has been found to cause less visual input stress than overhead lighting (Pavao et al., 2021).
    • Noise: Loud noise may make it difficult for some people with CP to engage in volunteering activities, for example if they also have a hearing impairment. Providing a quiet space to work or offering simple solutions such as ear muffs or noise cancelling headphones can be valuable (McMahon et al., 2019).
    • Temperature: Some people with CP may have difficulty regulating their body temperature. Access to air-conditioning, fans or working outdoors during specific times of the day may help.

Making adjustments for people with CP who also have an intellectual disability

About half of all people with CP will also have some level of intellectual disability, ranging from mild to severe. Volunteers with intellectual disability may require additional adjustments to help them in their role. For example, they may need help with comprehension, concentration, decision making, problem solving, and memory. The below adjustments could benefit all volunteers with intellectual disability, as well as people with learning disabilities, low literacy levels or English as a second language. 

Setting clear expectations

  • Outline in clear language what tasks are expected to be achieved during the day. Provide opportunities for questions and clarification (Jones et al., 2015).  
  • Provide a visual schedule to supplement verbal information and allow the volunteer to review their tasks during the day. This visual schedule can be in the form of list where each task is outlined and can be removed or marked off once complete (Pennington, 2014). Depending on the level of a person’s intellectual disability, the schedule may need to consist mostly of pictures, rather than words.
  • Keeping a consistent routine will also help, as will providing a workplace buddy to provide extra guidance.
  • Where possible, align tasks with the individual’s interests and hobbies to increase engagement and participation (Henderson et al., 2019).

Breaking tasks into small steps

  • Large tasks can feel very overwhelming for people with intellectual disability. By ensuring that tasks are broken down into smaller steps this will make the overall task easier to complete and follow (Stadskleiv, 2020).
  • A task analysis can be undertaken to consider all the steps involved in completing a task from beginning to end (Karhula et al., 2021). Develop a visual prompt for each step.

Using simplified language

  • Using easy language and short sentences which can be easily understood will support comprehension for people with an intellectual disability.
  • You may need to ask closed questions at times to provide opportunities for a yes or no answer.
  • Using gestures or sign language can be an easier way for some people to communicate visually (Blaskowitz et al., 2021).

Providing extra time

  • Individuals with an intellectual disability might need longer to complete tasks. When setting tasks allow for extra completion time, and regular monitoring of progress to allow for further adjustments to be made if needed (Reid et al., 2018).

Useful resources


References

Blaskowitz MG, Johnson KR, Bergfelt T, Mahoney WJ. (2021). Evidence to inform occupational therapy intervention with adults with intellectual disability: A scoping review. American Journal of Occupational Therapy, 75(3):7503180010. doi: 10.5014/ajot.2021.043562.

Cerebral Palsy Alliance. (2022). About cerebral palsy. https://cerebralpalsy.org.au/our-research/about-cerebral-palsy/what-is-cerebral-palsy/

Cerebral Palsy Alliance. (2017). Sensory processing interventions. https://cerebralpalsy.org.au/our-research/about-cerebral-palsy/interventions-and-therapies/sensory-processing-interventions/#1494280797845-1a2742a8-a246

Henderson, C. Rosasco, M., Meccarello, M., Janicki, P. Turk, M., Davidson, P. (2019). Functional impairment severity is associated with health status among older persons with intellectual disability and cerebral palsy. Journal of Intellectual Disability Research, 3(11), 887-897. DOI: 10.1111/j.1365-2788.2009.01199.x

Jones, K., Wilson, B., Weedon, D., Bilder, D. (2015). Care of adults with intellectual and developmental disabilities: Cerebral palsy. National Library of Medicine, 439(1), 26-30. https://pubmed.ncbi.nlm.nih.gov/26669212/

Kappelides, P., Spoor, J. (2018). Managing sport volunteers with a disability: Human resource management implications. Sport Management Review, 22(5), 694-707. https://doi.org/10.1016/j.smr.2018.10.004

Lindsay, S., Chan, E., Cancelliere, S., Mistry M. (2018). Exploring how volunteer work shapes occupational potential among youths with and without disabilities: A qualitative comparison. Journal of Occupational Science, 25(3), 322-336. https://doi.org/10.1080/14427591.2018.1490339  

Lindsay S. (2015). A scoping review of the experiences, benefits, and challenges involved in volunteer work among youth and young adults with a disability. Disability and Rehabilitation, 38(16), 1533-1546. DOI: 10.3109/09638288.2015.1107634

Marková, A. (2018). The “inclusive volunteering” phenomenon: Research into the volunteering of people with disabilities. Journal of Nursing and Social Sciences, 20(1), 48-56. https://doi.org/10.1016/j.kontakt.2017.10.003.

McMahon, K., Deepika, A., Morris-Jones, M., Rosenthal, Z. (2019). A path from childhood sensory processing disorder to anxiety disorders: the mediating role of emotion dysregulation and adult sensory processing disorder symptoms. Frontiers in Integrative Neuroscience, 13(22), 1-12. https://doi.org/10.3389/fnint.2019.00022

Miller, K., Schleien, S., Rider, C., Hall, C., Roche, M., & Worsley, J. (2002). Inclusive volunteering: Benefits to participants and community. Therapeutic Recreation Journal, 36, 247-259.

Novak I, Hines M, Goldsmith S, Barclay R (2012). Clinical prognostic messages from a systematic review on cerebral palsy. Pediatrics, 130(5):e1285-312. doi: 10.1542/peds.2012-0924.

Papadelis, C., Butler, E., Rubenstein, M., Sun, L., Zollei, L., Nimec,D., Snyder, B., Grant, P. (2018). Reorganization of the somatosensory cortex in hemiplegic cerebral palsy associated with impaired sensory tracts. Neuroimage: Clinical, 17(1), 198-212. https://doi.org/10.1016/j.nicl.2017.10.021

Pavao, S., Rocha, N. (2017). Sensory processing disorders in children with cerebral palsy. Infant Behaviour and Development, 46(1), 1-6. https://doi.org/10.1016/j.infbeh.2016.10.007

Pennington, L. (2014). Development of communication by young people with cerebral palsy. Developmental Medicine and Child Neurology, 56(10), 917-918. doi: 10.1111/dmcn.12502

Rak, E., Spencer, L. (2015). Community participation of person with disabilities: Volunteering, donations and involvement in groups and organisations. Disability and Rehabilitation, 38(17), 1705- 1715. https://doi.org/10.3109/09638288.2015.1107643

Reid, S., Meehan, E., Arnup, S., Reddihough, D. (2018). Intellectual disability in cerebral palsy: A population-based retrospective study. Development Medicine and Child Neurology, 60(7), 687-694. DOI: 10.1111/dmcn.13773

Stadskleiv, K. (2020). Cognitive functioning in children with cerebral palsy. Developmental Medicine and Child Neurology, 62(3), 283-389. https://doi.org/10.1111/dmcn.14463

The Definition and Classification of Cerebral Palsy. (2007), 49, 1-44. https://doi.org/10.1111/j.1469-8749.2007.00001.x

Wilma, A., Benner, J., Brunton, L., Engel, J., Gallien, P., Hilberink, S.,m Manum, G., Morgan, P., Opheim, A., Riquelme, I., Rodby-Bousquet, E., Simsek, T., Thorpe, D., Berg-Emons, Vogtle, L., Papageorgiou, G., Roebroeck, M. (2021). Pain in adults with cerebral palsy: A systematic review and meta-analysis of individual participant data. Annals of Physical and Rehabilitation Medicine, 64(3), 1-11. https://doi.org/10.1016/j.rehab.2019.12.011