Hard To Swallow: Tanisha Flemming

Summary

Tanisha, a unique individual with a rare genetic disorder affecting her chromosomes, struggles with oral motor dysphagia, causing her to choke frequently. Her brother Harley plays a crucial role in her life, assisting her and their single mother, who feels the weight of caregiving. Despite the challenges, Tanisha's determination and the support from the National Disability Insurance Scheme (NDIS) are highlighted, although there's concern about recent reductions in therapy hours and the denial of funding for mealtime support, which is essential for managing her condition.

Takeaways

• 🌟 Tanisha has a unique genetic disorder with a chromosome 5q duplication and an 18p deletion, making her one of the few, if not the only one, with this condition globally.
• 😔 She experiences oral motor dysphagia, which causes her to choke, especially during the night, and can happen at any mealtime.
• 👦 Harley, her brother, plays a significant supportive role in Tanisha's life, often helping her when she chokes and providing emotional support.
• 👩‍👧‍👦 The family dynamic is challenging as the mother, a single parent, juggles the care of both children, with a lot of time dedicated to Tanisha's needs.
• 🏠 Harley sometimes expresses not liking his sister much, but it's clear he deeply cares for her and is willing to help in any way he can.
• 😴 Tanisha's condition affects the family's sleep due to the constant need to attend to her choking episodes, which can occur at any time.
• 🍽️ The risk of choking is a daily concern and can be life-threatening, emphasizing the importance of managing mealtime difficulties for individuals like Tanisha.
• 🔍 The National Disability Insurance Scheme (NDIS) initially provided therapies such as speech and occupational therapy, but has recently reduced support significantly.
• 🤔 There is confusion and disappointment as the NDIS has withdrawn support without clear reasons, leaving the family to manage Tanisha's care with fewer resources.
• 🚫 The NDIS has also stated they will not fund support for mealtime management and swallowing, which has traditionally been covered under disability services.
• 🌈 Despite the challenges, Tanisha is described as a hero for her resilience and willingness to try anything, showing great determination in the face of adversity.

Q & A

What is the rare genetic disorder that Tanisha has?

Tanisha has a unique genetic disorder characterized by a duplication of chromosome 5q and a deletion of 18p.

What is oral motor dysphagia, and how does it affect Tanisha?

Oral motor dysphagia is a condition that affects the ability to swallow properly, causing difficulty and risk of choking, especially during meals and at night.

How does Tanisha's brother, Harley, assist her when she chokes?

Harley helps Tanisha by hitting her on the back to dislodge whatever is causing her to choke, often jumping out of bed to assist in the middle of the night.

What role does Harley play in Tanisha's life, according to the script?

Harley plays a significant role in Tanisha's life, providing support, laughter, and assistance, especially during her choking episodes.

How does the mother feel about her role as a single mother and a carer for both children?

The mother feels guilty at times for being a single mother and a carer, as much of her time is consumed by caring for Tanisha, and Harley has to help a lot.

What challenges does Tanisha face with her motor skills?

Tanisha has poor fine and gross motor skills, making everyday tasks like making a sandwich or drinking water difficult and risky.

What was the initial support package provided by the NDIS for Tanisha?

The initial NDIS package included therapies such as speech therapy and occupational therapy (OT).

What changes were made to Tanisha's support package during the first review by the NDIS?

During the first review, the NDIS removed most of Tanisha's speech therapy and significantly reduced her occupational therapy hours to only eight hours over 12 months.

Why did the NDIS decide not to fund support for mealtime management and swallowing DVDs?

The NDIS considered mealtime management and swallowing a health issue and not a disability service, hence they decided not to fund the support.

How does the mother describe Tanisha's character and attitude towards life?

The mother describes Tanisha as kind, caring, and annoying due to her coughing issues, but also as a hero who tries her hardest and is willing to have a go at anything and everything.

What is the significance of the support provided by disability services in Port Macquarie as mentioned in the script?

In Port Macquarie, disability services have traditionally covered swallowing and mealtime assistance, which is important for individuals like Tanisha who have high risks associated with these activities.