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A girl in a wheelchair talks to another girl

Support for neuromuscular conditions

When you are living with a neuromuscular condition your support needs change as you age. Montrose allied health team has been working to support Queenslanders with neuromuscular disabilities since 1932. We’re here to help you achieve your goals as you navigate life’s changes.

Neuromuscular conditions we work with

  • Duchenne and Beckers Muscular dystrophy
  • Charcot-Marie-Tooth and related peripheral neuropathies
  • Spinal Muscular Atrophy type 1, 2 and 3
  • Congenital Myotonic Dystrophy
  • Arthrogryposis
  • Other rare neuromuscular disorders

Why Montrose?

Finding a suitable therapy provider for children and young people with neuromuscular disability can be difficult. As a parent or a referrer, you want to ensure that the service provider has the knowledge and experience necessary to support you on your journey through key life transitions.

Montrose has a long history of working with people with neuromuscular disabilities. We have invested in the knowledge and skills of our therapists to ensure they are equipped to work with more complex cases.

Over the years, medical advancements and new research has significantly changed the management of children with neuromuscular conditions. We work closely and liaise with the hospitals who manage children and young people with neuromuscular conditions to receive referrals and enhance the skills of our therapists.

Montrose therapists are part of a multi-disciplinary team including Physiotherapists, Occupational Therapists, Speech Pathologists and Social Workers. As a parent of a child with disability, you can find yourself working with many specialists for support. Having all these specialists working in one organisation can mean a more collaborative approach to achieving your goals.

Newly diagnosed with a neuromuscular disability

Receiving a diagnosis of a neuromuscular condition is a challenging time for any family as you seek to understand neuromuscular conditions and how to support your child and family.

Montrose is here to help you navigate through the early days and to focus on early goals that can make a real difference in your child’s quality of life.

In many cases, support will start with a Physiotherapist who can advise on maintaining and supporting developmental and functional needs. Your Montrose Physiotherapist is part of a multidisciplinary team including Occupational Therapists, Speech Pathologists and Social Workers. This means that additional supports can be accessed quickly and easily.

a young girl looks at a toy

What disability supports are available for neuromuscular conditions?

Support to understand your diagnosis and what it means for your family

Montrose Social Workers have extensive experience working with families with neuromuscular disabilities. They can help you work through what your diagnosis will mean, connect you with the right supports and establish goals for early intervention.


Support with movement

Babies and young children who have a neuromuscular disorder may develop movement skills later, or not at all. Evidence shows that early intervention therapy can make a tangible difference to the well-being of children with neuromuscular disabilities. In the early years, Montrose Physiotherapists play a very important role in helping develop movement skills and play.


Support with speech and language

In the first few years of life children go through significant language development. Neuromuscular conditions can also impact swallowing and eating. Montrose Speech Therapists work to support parents with feeding and swallowing issues.


Using assistive technology

Montrose Occupational Therapists can advise on and support using Assistive Technology which helps maintain or improve functional capabilities. For young children with a neuromuscular condition this can include support for bathing, sitting and car seats for travel.


Supporting parenting

Understandably parents can feel overwhelmed by a diagnosis. You may be unsure how to handle or interact with your child, even if you have other children. We understand this and Montrose therapists will work with your family to feel confident in interacting with your infant, engaging them with play and reading their cues.

Early Support for Ella

Ella has Congenital Myotonic Dystrophy which is associated with severe muscle weakness as well as speech, hearing and vision difficulties. The Sunshine Coast Team have been working with Ella since she was 6 months old.

Read more about Ella here. 

A young girl in a wheelchair looks at her therapist

Early Years support for a neuromuscular disability

Every child with a neuromuscular disability will have different symptoms and challenges, depending on their condition and how quickly it progresses. You may find that your child’s condition  causes muscle weakness and fatigue meaning your child finds it difficult to keep up with peers or siblings.

Early therapy support for children with neuromuscular conditions can make tangible differences in later life. You are also learning how to provide support and our focus will be on the whole family. Physiotherapists, Occupational Therapists and Speech Pathologists can all have an important role to play at this time.

A boy with glassess is playing with toy bricks

Montrose supports for early years

Support with movement

Young children are going through significant growth in physical movement as well as speech and language development. Montrose therapy support at this critical time will focus on helping children move, play, learn and develop their potential.


Identifying Assistive Technology needs

A wide range of disability related equipment and assistive technology can be accessed under the NDIS, privately and other funding sources. Younger children may require handrails, walkers or more significant adaptions to bathrooms. Your Montrose therapist can advise on the best Assistive Technology for your child’s needs and goals.


Supporting speech and language development

The early years are the golden time for growing speech and language skills. Montrose can support communication strategies where required as well as helping with eating and drinking where it is affected by a neuromuscular condition.


Everyday life skills

Support can be provided for motor skills such as getting dressed, playing, and going to the toilet.

Early Support for Isla

Isla was diagnosed with Spinal Muscular Atrophy (SMA) – Type 1 at six months old. The Montrose Sunshine Coast team have supported the family since diagnosis with equipment, support for their NDIS application and ongoing therapy sessions.

Read more about how Isla is now getting ready to start Kindy here.

A montrose therapist is looking at a young girl. She is laughing.

Support for school-aged children with a neuromuscular condition

As children with a neuromuscular disability reach school age, their needs can change. This means their support needs to change with them.

Montrose therapists can help families understand what to expect and work collaboratively with other therapists to achieve age-appropriate goals.

Therapy support at this age usually involves

  • Accessing home and community
  • Starting and succeeding at school
  • Maintaining independence with Assistive Technology and support.

 

A boy who uses a wheelchair is at school

Starting and succeeding at School

Starting school is a big milestone but it can also be overwhelming for many families as you navigate physical access, support in the classroom, extra-curricular activities and the emotional challenges that can emerge at school. Your Montrose therapist can support you to work through this and set you up for the best start at school.

Queensland schools are resourced to provide additional support for students with disabilities. Your therapist can help engage with your school to facilitate meeting your needs and suggest necessary accommodations.


Collaborating with school staff to set up goals and measure outcomes

Many teachers won’t have had personal experience in supporting children with a neuromuscular condition. Your Montrose therapist can work with your teacher through meetings, education and training to help them understand your support needs in the classroom. Montrose also provides support at school through the Specialist Disability Support in Schools (SDSS) Program.


Ongoing support with movement, speech and language

As your needs change, the support that you need with movement, speech and language will also vary. Typically Montrose therapists will be supporting play, which remains a vital part of development at this age, as well as promoting independence to cope with school and other environments. Children with neuromuscular disabilities can also experience fatigue which can impact their ability to participate at school and other settings. Your therapist can advise and support adjustments that may be required including moving into powered wheelchairs where required.


Building social networks

Sometimes our clients report feeling disconnected and socially isolated at school because of their disability. Having a group outside of school can help build important social connections. We run social groups to bring people with similar experiences together.


Social Work support

Our social workers can support families with children experiencing anxiety, bullying or other challenges relating to their disability. They may be able to provide guidance on other organisations to provide support as well as more practical tips.

Meet Lincoln

Lincoln is living with Duchenne Muscular Dystrophy. Recent support from Montrose has focused on Lincoln’s communication needs. Montrose Speech Pathologists have worked on strategies to help Lincoln communicate. With the support of his school, he is learning sign language and is able to write his own name.

Read more about Lincoln here.

A young boy pretending to drive a car

Support for older children and young adults with a neuromuscular condition

Many parents are concerned about the next steps after school for their child with a disability. As with all times of transition, it can be an uncertain period as new support needs emerge and young people consider new goals as an adult. This can also be an exciting time to develop independence.

Inputs from support services can become more significant, compensating where there is reduction in movement. Just as important though, are building connections and participation in social, work or education including connecting with peers.

A young man is sitting in a wheelchair - he is at university and is surrounded by books

What support is there for older children and young adults with a neuromuscular condition?

Continued support at school

Assistive Technology needs can change as students move through High School toward further education or the workplace. Support from Montrose therapists can assist you in keeping up with peers with both communication and physical movement needs.


Developing goals

Your Montrose therapist can help you develop and work on goals for post-school. This might be how to access further education, prepare for employment or develop life skills.


Supporting changing health needs

The impact of neuromuscular conditions can change as you grow up. Supports will be adapted as required and may include pain relief, respiratory care and pressure care. Over time, you will also begin moving from the children’s health system to adult services. Montrose can provide support at this stage including assistance in helping you engage with medical teams  and the provision of reports.


Supporting independence

As you grow older you might like to catch your own transport, move out of home, holiday independently from your family and pursue a job. The team at Montrose can help you develop new skills, overcome accessibility barriers and work with other organisations who may not be as aware of neuromuscular disabilities to get the support you need.


Developing new interests and hobbies

Once you leave school you may have more time for extra interests and hobbies. Hobbies are a great way to meet new people and learn new life skills. Our Lifestyle & Leisure group run day programs to help you be active, learn new skills and have fun.


Connecting with the community

Having a connection to your local community is important in feeling valued and contributing to society. This can be particularly important at times of change and transition such as moving from school to college or moving into the workplace. Support is available from Montrose to work with both the physical environment adaptions that may be required and the personal support to connect and engage with new people.


Short and Medium Term Accommodation

Our Getaway on the Gold Coast provides Short and Medium Term Accommodation – custom built for physical disability with en-suite private rooms and 24 hour support. The team support short periods of respite, time away from home, supported holidays and longer stays following discharge from hospital. You can also stay with us while waiting for Supported Independent Living or home adaptions to be completed.

Elizabeth and Magenta explain how Short Term Accommodation helps with achieving their independent living goals.

Support for adults with a neuromuscular condition

Transitions and life changes continue after school and into adulthood. Many conditions are associated with decreasing mobility which can be a challenge as you also look to develop greater independence. Looking for your own home and career development are a key focus as well as continuing to manage a neuromuscular condition.

two young men are in a park. They are in Powerchairs

What support is there for adults with a neuromuscular condition?

Support for the future

Family support from Social Work can be engaged to assist with the confronting realities of ongoing progression of a condition. This may included supporting access to counselling. Support can also focus on the transition to accessing adult health services and learning to manage your own health conversations.


Supporting independence

As you grow older you might like to catch your own transport, move out of home, holiday independently from your family and pursue a job. The team at Montrose can help you develop new skills, overcome accessibility barriers and work with other organisations who may not be as aware of neuromuscular disabilities to get the support you need.


Building social connections

Having a connection to your local community is important to feeling valued and contributing to society. Additional supports can be useful as you move from university to the workplace or into new accommodation in a different area.


Pain relief

Significant or chronic pain can unfortunately be a reality for some people with neuromuscular conditions. Montrose therapists can advise on alleviating pain and also support conversations with doctors and hospital teams.


Respiratory care

Our experience with neuromuscular conditions and our training and staff development is vital in working with you. Montrose therapists can assist with respiratory assessments and support. The use of respiratory devices such as CPAP (Continuous Positive Airway Pressure), Cough Assist, IPV (Intrapulmonary Percussive Ventilation) can be supported by our Physiotherapy Team.


Pressure care

Our team can advise on products to effectively manage pressure injuries including specialised mattresses, pressure cushions and specialised chairs to meet different needs and personal preferences.

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