October is Down Syndrome Awareness Month 2022. This day is celebrated by spreading awareness of the condition and celebrating the individuality of those with Down syndrome.

It’s estimated approximately one in every 1,100 babies born in Australia will have Down syndrome — that’s around 290 babies born each year. 

Although no national data is collected on the number of people in Australia with Down syndrome, based on Western Australian data, it’s estimated for every 10,000 people in Australia, 5.14 people have Down syndrome.

People with Down syndrome are individuals with unique skills, challenges and goals. Supporting them can require patience and a willingness to understand each of these things from their perspective. Routines and clear instructions can often be useful when introducing new skills and learning new tasks. It’s important to seek their feedback, listen to their ideas and respect their opinions. 

Helping the person understand their own health challenges is also important, encouraging healthy eating, regular exercise and attendance at routine health appointments.

Most of all, support can contribute to building a good life for a person with Down syndrome and educate others about their unique personality and their role as a valued member of our community.

What is Down Syndrome Awareness Month?

In 1978, Barton and Betsy Goodwin welcomed their child, Carson Goodwin. When the couple learnt about Carson’s condition, they began advocating for other individuals with Down syndrome, looking for opportunities for them to learn and grow. Betsy’s advocacy led to the founding of the National Down Syndrome Society in 1979.

Over the next few years, the not-for-profit organisation began its work on raising awareness of Down syndrome and in 1980, it officially declared October as Down Syndrome Awareness Month.

Since then, in the month of October, people all over the world celebrate this day, to educate others about Down syndrome, and to make everyone aware that individuals with Down syndrome are valued members of society and their voices matter.

During October, you can take part in StepUP! events to help raise awareness of Down syndrome.

Keep reading to know more about Down syndrome and what NDIS support for Down syndrome might look like.

What is Down syndrome?

Down syndrome is a genetic disorder that occurs when a baby is born with an extra copy of chromosome 21. Most people have 23 pairs of chromosomes in each of their cells (46 in total), but people with Down syndrome have 47 chromosomes in their cells, i.e. they have an extra chromosome 21. This extra copy changes how the baby’s body and brain develop, which may cause intellectual and learning disabilities as well as physical challenges for the person as they grow. How Down syndrome occurs is known. However, it’s not known as to why it occurs. 

It’s important to note: 

• Down syndrome is a genetic condition
• Down syndrome is not an illness or a disease
• It is a lifelong condition and there’s no cure for it
• As a genetic disorder, it cannot be prevented and no one is to blame
• Each person with Down syndrome is a unique individual with their own personality, passions, strengths and weaknesses, just like anyone else
• They also have their individual needs for support as they go through life.

NDIS support for Down syndrome

The NDIS does provide funding for people with Down syndrome. Down syndrome is included on the List B of conditions likely to result in permanent impairment. To be eligible for NDIS funding:

• The person must be aged between 7 and 65
• The person must live in Australia and be an Australian citizen, a permanent resident, or a Protected Special Category visa holder
• The person’s disability is caused by a permanent impairment substantially reducing their functional capacity.

For children under the age of 7, NDIS funding can be accessed through Early Childhood Early Intervention. For those over the age of 7, however, it’s necessary to provide evidence of the impact of the disability on everyday functioning to secure NDIS funding.

How independent support workers on Mable can help

Individuals, children or adults, with Down syndrome may experience a range of health challenges that affect them physically and cognitively. 

These may include congenital heart disease, intellectual disability or learning difficulties, and as they get older, they may experience other ageing-related health issues such as arthritis, osteoporosis and dementia as well.

Different people across a range of age groups need different types of support. 

Support for children with Down syndrome

Like all children, kids with Down syndrome need support to grow, play and learn. Due to their health challenges, however, they may need some support in certain aspects of their life. 

With NDIS funding, you can start connecting with supports, such as early interventions, including physiotherapy and speech therapy.

Parents can build a team of support workers on Mable to engage them in several ways:

• Engaging the child in play to promote good physical health 
• Engaging in activities such as reading and writing to improve their learning and communication abilities as well as fine motor skills to supplement what’s being taught in the school
• Skill building; you can find support workers on Mable that have the specific skills you’re looking for (such as playing the guitar, learning how to dance, learning sign language)
• Support in setting up a daily routine to make them feel settled (like getting ready, travelling to school, playtime, mealtimes, etc.)
• Support with medical checkups like hearing, eyesight and other health checks
• Respite care for parents 
• Support with building their independence in general and encouraging social participation
• Support with personal care.

Support workers for adults with Down syndrome

Not all adults with Down syndrome need the same kind of support or in the same aspects of life. Depending on the person’s needs, they can build a team of support workers on Mable to engage them in many ways:

• Support with day-to-day tasks, such as cleaning, grocery shopping, meal preparation, laundry
• Support with personal care
• Study assistance if the person is interested in pursuing a certification or higher education program
• Managing budgets and finances, paying bills, assisting with banking, etc.
• Skill building in different ways (learning to play an instrument, photography or how to cook)
• Driving to and from appointments 
• Accompanying the person on outings, a trip or social events
• Transitioning to independent living. Support workers can help connect the individual with the right type of accommodation and help with forms, interviews and documentation
• Support with finding and maintaining employment, and volunteer opportunities
• Engaging in physical exercise and participating in other activities of their interest (like fishing or painting)
• Support them to develop their overall sense of independence.

With the right health care and support from family and community, a person with Down syndrome can achieve their goals like anyone else and live a fulfilling and enjoyable life.

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