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Children and Case Management within the Deaf Community

The loss of hearing due to catastrophic injury or major trauma brings lifelong challenges for children and young people, impacting their ability to communicate and connect with the world around them. Case managers play a crucial role in supporting these children and young people, working to ensure that they receive the rehabilitation and support they need to enjoy a fulfilling life.

Before beginning it’s important to distinguish between the different terms used to describe children with hearing loss, including ‘deaf’ with a capital d and ‘deaf’ with a lowercase d.

  • Children who are Deaf with an uppercase d identify as culturally Deaf and actively engage with the Deaf community. They share a cultural identify with other Deaf people and will often use a common sign language.
  • The use of deaf with a lowercase d identifies children that have the physical condition of hearing loss, but who don’t necessarily display a strong connection with other deaf people and often prefer to communicate with speech.

However, working with children d/Deaf from birth and children who are d/Deaf after experiencing a catastrophic injury or major trauma, requires a unique set of skills and knowledge. The needs of the Deaf community must be respected, as well as the challenges that can arise when supporting a child or young person who has lost their hearing. Whether these children are supported integrate into the Deaf community following their accident or illness is an important consideration, as it can have a significant impact on their rehabilitation and long-term outcomes.

Despite the challenges, there are ways to ensure engagement in rehabilitation and positive outcomes for children who are d/Deaf. By working closely with the Deaf community and providing tailored support, case managers can help these children and young people to thrive and regain their independence.

The role of a case manager

When a child suffers a catastrophic injury resulting in deafness, their entire world undergoes a profound transformation. In such circumstances, the role of a case manager becomes crucial in providing comprehensive support and navigating the unique challenges faced by these children and young people. From addressing their rehabilitation needs to integrating them into the Deaf community, case managers play a pivotal role in ensuring positive outcomes and facilitating their journey towards a fulfilling life.

Case managers working with children who are d/Deaf fulfil a multifaceted role that encompasses coordination, advocacy, and guidance. They act as a single point of contact, orchestrating various aspects of the child's care, rehabilitation, and educational needs. By collaborating with medical professionals, therapists, educators, and families, case managers ensure a holistic approach to addressing the child's requirements.

A major part of the role requires raising awareness and educating stakeholders on acceptable practices and behaviours. Common misconceptions include understanding the use of language; British Sign Language (BSL) is often the preferred language among the Deaf community in the UK, with English as a second language. Deaf children and young people therefore can experience difficulties with reading and writing, as certain grammatical features and structures in English differ from those used in BSL.

Understanding the needs of the Deaf community

For many Deaf people, deafness is not just a physical condition; it is a unique cultural and linguistic identity. Case managers must have a deep understanding of the Deaf community's needs, values, and communication methods. This knowledge allows them to advocate for appropriate rehabilitation services that go beyond medical interventions and embrace the cultural and linguistic aspects of Deaf identity. By acknowledging and respecting the Deaf community's distinctiveness, case managers can create an environment conducive to the child's overall development and well-being.

Sara Bond is a Clinical Case Manager at Bush & Co with 20 years post qualifying experience, including several within a specialist team supporting d/Deaf children, and is accomplished at communicating using BSL. Sara highlights the importance of having case managers with the appropriate experience:

Integrating into the Deaf community

Following an accident or illness that leads to deafness, children may experience a sense of isolation and disconnection. Case managers need to consider facilitating the child's integration into the Deaf community, which can provide a supportive network and a sense of belonging. This may involve connecting the child with Deaf mentors, arranging opportunities to attend community events, and promoting the acquisition of sign language skills. By fostering a connection with the Deaf community, case managers can help children embrace their new identity and build relationships with peers who share similar experiences. There are several benefits of community integration:

  • Improved communication through interaction with other Deaf people, allowing children to learn new signs and develop existing skills.
  • Increased sense of belonging to boost emotional wellbeing by being part of a community they identify with and feel a part of.
  • Access to support to help with rehabilitation, such as specialist counselling or therapy services.
  • Improved confidence and self-esteem can come through interaction with other Deaf people, helping to develop a sense of comfort with their identity.
  • Opportunities to socialise and make new friends help with feelings of isolation or loneliness.

Safeguarding positive outcomes

Engaging a child in their rehabilitation journey can be a complex endeavour, particularly for those who are d/Deaf. Effective communication, tailored interventions, and a focus on the child's strengths and interests are key elements in ensuring their active participation. Case managers collaborate with healthcare professionals and therapists to develop personalised rehabilitation plans that consider the child's communication preferences, learning styles, and cultural background. By making rehabilitation an inclusive and empowering experience, case managers enhance the child's motivation, engagement, and overall outcomes.

Challenges in providing support

Supporting a child or young person who is d/Deaf presents unique challenges that case managers must address. Communication barriers can hinder effective information sharing and understanding, making it crucial for case managers to employ accessible communication methods, such as BSL/English interpreters or assistive technologies. Additionally, cultural sensitivity is vital in navigating the Deaf community's values and norms, ensuring that interventions respect their cultural and linguistic identity.

Further considerations relate to accepted standards in behaviour, where the use of physical contact, hand gestures and banging surfaces to get attention may differ from those engaged by those able to hear. Furthermore, case managers may encounter logistical challenges in coordinating services and accessing specialised resources tailored to the needs of d/Deaf children.

  • Addressing Cultural and Linguistic Barriers
    One of the biggest challenges in supporting d/Deaf children is addressing the cultural and linguistic barriers that exist between the Deaf community and the hearing world. This can lead to feelings of isolation and frustration, which can in turn impact their engagement in rehabilitation and their overall outcomes. To address these challenges, case managers working with d/Deaf children need to be sensitive to the cultural and linguistic needs of their clients and ensure that they have access to appropriate support and resources.
  • Overcoming Communication Barriers
    Another challenge that can arise when working with d/Deaf children is overcoming communication barriers. d/Deaf children may struggle to understand spoken language or to express themselves verbally, which can make it difficult to engage with them and provide effective support. Many d/Deaf children are also born into families who do not use sign language, which can make it difficult for them to communicate with their parents and siblings. An understanding of the needs of the whole family is therefore critical to overcoming barriers to effective communication.

    Case managers may need to use a range of communication strategies, including BSL/English interpreters, written communication, and visual aids. They may also need to work closely with other professionals, such as speech and language therapists, to ensure that the child's communication needs are being met. Children with physical disabilities that affect their upper limbs such as cerebral palsy, for example, may be unable to sign effectively and need alternative methods to communicate effectively.

  • Providing Accessible Rehabilitation
    Finally, case managers working with d/Deaf children need to ensure that rehabilitation services are accessible and appropriate for their clients. This may involve adapting existing rehabilitation programmes to meet the needs of d/Deaf children or developing new programmes that are specifically designed for this population.

    This may include providing visual aids and other resources that are accessible to d/Deaf children, as well as working with other professionals to ensure that the child's rehabilitation needs are being met. By addressing these challenges, case managers can help to ensure that d/Deaf children receive the best possible care and support following a catastrophic injury or major trauma.

Sara Bond articulates the difficulties accessing suitable resources when stating:

“The availability of specialist resources for Deaf children differs across the UK, with some areas desperately lacking in equipment and facilities, leaving families with the burden of having to regularly travel outside of their communities to find what they need. In some cases, families are faced with the need to relocate to gain access to schools, interpreters, or other resources on which they rely.”

The importance of a case manager

Children and young people case managers and paediatric case managers play a vital role in supporting children who have experienced catastrophic injuries resulting in deafness. By understanding the needs of the Deaf community, facilitating integration, and ensuring engagement in rehabilitation, case managers can empower children to thrive in their new reality. Despite the challenges that arise, their dedication and advocacy contribute to positive outcomes, enabling these children to embrace their Deaf identity, achieve personal growth, and lead fulfilling lives with their families and within their communities.