Specialist healthcare needs of children with developmental disabilities

NATHANIEL SCHERER: In this step, we will consider the specialist healthcare needs of children with developmental disabilities as we discuss the types of services and therapies that may offer the best support. These specialised services may be included in early intervention programmes, but they will likely not be limited to a child’s early life. And these specialist healthcare interventions may continue to be needed as a child transitions into adolescence and adulthood. Before we begin, we need to consider that although children with developmental disabilities may often require specialised services, these types of service may not be widely available in low and middle income countries, especially in rural or conflict affected areas.

Estimates from the World Health Organisation show that in Asia and Africa, the number of specialised personnel is less than 1/10 of what is required. For example, in Nepal, a country of 30 million people, there are just 400 physiotherapists and 8 speech and language therapists. Additionally, the World Health Organisation in the World Bank have reported that in low- and middle-income income countries, only 3% of need for hearing aids is met. That being said, we still need to be aware of these types of services so we can think about how to improve their availability and accessibility for children with developmental disabilities. So what do we mean by specialist healthcare?

Although children with developmental disabilities require the same general healthcare services as all other children, they may require further support and attention in several areas as a result of their developmental condition and impairments. This care may require the attention of specialised professionals with training and a set of conditions or impairments. These specialists are often called allied healthcare professionals. It should be noted that each child’s needs will differ depending on a variety of factors, including type and severity of impairment, personal characteristics, and environmental factors. For the remainder of this video, we will give some examples of specialist health needs and services. But this is by no means an exhaustive list.

Family education and training is often the first step in any health strategy for children with developmental disabilities to empower parents and families with information on the process and importance of ongoing development, the characteristics of their child’s condition, and what it means to have a disability. Information is usually provided through face-to-face discussions, leaflets, or video. Often, families will do their own research a home. And interactions with healthcare professionals allows parents to ask questions and clarify their understanding. Peer support groups can provide a forum for parents to share information and experiences. It’s important that healthcare professionals emphasise a child’s potential during the process with a focus on building hope and aspiration for the future.

As we move on from family education, we begin to consider a child’s need for rehabilitation services, which are designed to maintain or improve the child’s everyday skills and functioning. Rehabilitation services focus on a child’s strengths and abilities in order to address a range of evolving needs as they age. Many rehabilitation therapies and interventions are designed to be conducted by parents and children at their home so their therapy is ongoing and can be effective in the longer term. Let’s first think about physical therapy, also called physiotherapy, which is primarily focused on helping children with developmental disabilities improve or restore their mobility and motor functioning.

Physical therapy can also help to reduce pain, prevent contractures, maintain posture and respiratory function, and help to improve blood circulation. Typically delivered by a physiotherapist with carers instructed how to deliver these exercises at home and at school, physical therapy may include stretching and flexibility exercises, massage, or muscle strengthening and is useful for children with coordination or motor impairments, including children with cerebral palsy, spina bifida, or muscular dystrophy. Occupational therapy is designed to help a child to minimise impairments and improve their functioning and ability to undertake activities of daily life, including learning, socialising, and play. Occupational therapists work alongside children and their families to identify difficulties that affect independence and participation for that child.

By working together, therapists and families can develop practical solutions to overcome these challenges and move towards a child’s developmental goals. Much of this therapy will focus on assisting children and families in their natural environments so at home, at school, and so on. Occupational therapy will often focus on facilitating aspects of play, socialising, and self-care. It may be useful for children with a diverse range of impairments. And advice and strategies can address difficulties across a range of functional activities, including activities of daily living, for example, dressing, bathing, feeding, and the use of assistive technology, for instance, the use of a wheelchair or adapted cutlery. It can also include physical exercises, fine motor skill exercises, and hand-eye coordination.

Whilst a physiotherapist helps a child to improve the movement of their body, the physical exercises conducted with an occupational therapist are more specific to accomplishing everyday tasks, such as writing or holding a knife and fork. Occupational therapy can also include individualised treatment for sensory impairments and communication and social skills training. Speech and language therapy is designed to support a child to develop their communication skills, including listening, understanding spoken language, improving clarity of speech, and other forms of communication, such as using signs or symbols. As well as communication, speech and language therapy may also help a child who is having difficulty feeding and swallowing, assessing safety of swallow, and advising on food consistency.

This therapy can take place at home, schools, health settings, or social care centres. Parents can be taught strategies to provide ongoing input day by day at home or at school. Speech and language therapy may involve advising parents on building joint attention, using communication to make choices, simplifying language to promote understanding, tongue movement and coordination, word comprehension, sentence structure, and grammatical knowledge or non-verbal skills training, which may include facial expressions, body posture, and eye contact. Therapies will be good for children with specific speech and language disorders and those with general developmental impairment. The final rehabilitation service to discuss is that of positive behaviour support. Positive behaviour support addresses challenging behaviours, such as aggression or destructiveness.

Children at high risk of challenging behaviour and those who would benefit from this support may include those with autism, intellectual impairment, or attention deficit hyperactivity disorder. Many different allied health professionals, including those previously discussed, work with children to strengthen and reinforce positive behaviours and to anticipate where things may go wrong so they can develop strategies to prevent these behaviours from happening. Positive behaviour support requires an understanding of a child’s holistic needs so the factors that provoke challenging behaviour can be identified, for example, tiredness, lack of boundaries, and negative response to sensory stimuli, such as loud noises. In addition, strategies that are useful in promoting good behaviour can be incorporated into daily management.

For instance, clear instructions and expectations, reward systems, and praises and attention when the child is behaving well. Therapeutic strategies are typically identified by specialists working with the child and family and are then often employed by parents and teachers in a child’s everyday life. Exercises may include prearranged signals in a school setting to let a child know when they are doing something that is not acceptable or teaching a child strategies to think about problem and find a solution. Other forms of specialised support may include assistive technology, which can help improve a child’s functioning. We’ll be discussing assistive technology in the next step, so we won’t linger on the topic here. To end, let’s consider mental healthcare.

Although all children are susceptible to mental health issues, research shows that children with developmental disabilities are at an increased risk. For instance, children with intellectual impairments are around four times more likely to develop a mental health problem than non-disabled peers. There are many contributing factors to the increased risk amongst children with developmental disabilities, including the management of pain and fatigue, stigma, exclusion from services in schools, and social isolation. It’s also important to note the challenging behaviours, as discussed earlier, may result from a mental health issue, such as depression or anxiety. Mental healthcare is a complex system and includes preventative and promotion services, as well as treatment interventions for certain mental health disorders.

Preventative and promotion services may focus on improving a child’s awareness of mental health and an understanding of risk factors, including alcohol and substance abuse. These programmes can also help parents and teachers learn to recognise the early signs of a mental health problem so children can receive immediate support. The type of treatment and intervention service required will depend on a child’s mental health issue and their personal circumstances. Common treatments include various forms of talking therapy, social support, and medication. Many healthcare professionals are trained to recognise the signs of poor mental health, but few are trained to offer long term treatment and support. Healthcare professionals need to be attuned to the mental health services and referral pathways in their setting.

This presentation has by no means offered an exhaustive list of the specialist health needs of children with developmental disabilities. And there are many that we haven’t had time to cover, such specific audiology services, provision of orthoses, special education, and so on. Although we haven’t been able to cover all specialist needs and services, we hope that these examples give you a better understanding of the diverse services needed by children with developmental disabilities. It’s important to consider the overlap between these services and indeed the overlap in benefits across developmental domains. For example, a child who receives occupational therapy is better able to engage in everyday activities and socialise with family and peers, thereby improving their cognitive and social development.

As you can see from the interventions available, a child may have to visit several professionals across a number of different services if they have multiple and complex needs. This highlights the need for effective collaboration and communication between service providers, the child, and their family. We will focus on this later in the week.