Case Study: Living Independently With A Disability Through Disease

Case Study: Living Independently With A Disability - Huntington's Disease

© Danielle Robertson Consulting Pty Ltd t/as DR Care Solutions

A few weeks back we covered the story of Jo, a 36-year old Brisbane woman with Down syndrome who lives independently, and now shares her life with husband, Justin.

Achieving this independent life is the result of Jo's mum, Sue Boyce's determination that her daughter lives a good life. Sue's inspiration is the work of Canadian disability advocate, Al Etmanski.

Driven by a desire to support his own daughter, Al set up the Plan Institute in 1989. This Canadian not-for-profit organisation envisions a future where all people with disabilities are able to live a good life. 

Al defines "a good life" as being based on five elements[1], one of which is the focus of today's blog:

"living comfortably in a place of their choosing".

 

This week and next, I share the stories of two clients who in their 50s were left highly dependent - the first through an inherited disease and the second through an accident.

Their wishes of "living comfortably in a place of their choosing" have been made possible through assistance from DR Care Solutions and funding from the National Disability Insurance Scheme (NDIS).

 

Loss of independence through disease

Fifty-four year old Tom* inherited Huntington's disease. It is a rare disease that progressively destroys nerve cells in the brain.

The hallmark symptom is uncontrollable movement of the arms, legs, head, face and upper body. This is accompanied by a decline in thinking and reasoning and mood swings. Sadly there is, as yet, no cure and no way to slow or stop the brain damage.

I was introduced to Tom two years ago through his Enduring Guardian. Tom had just been hospitalised with a fractured leg caused by a fall.

Having been assessed by the hospital specialists as a high falls risk, Tom's Enduring Guardian was concerned about future falls. At the time Tom lived in a two-storey home.

 

Helping the client live independently

I was called on to help guide Tom in making some decisions around how he may live independently, for as long as possible.

After those discussions, it was agreed that for safety, a home without stairs and with security and closer neighbours was required. The search began.

We settled on a two-bedroom ground floor apartment close to the train station. With initial financial support from his friends before NDIS funding became available, we put in place some day-to-day supports to help with daily living.

 

Retaining the client's independence as their condition deteriorates

Two years on, I am pleased to report that Tom still lives independently, despite deterioration in his condition.

The amount of in-home care has increased to help counter his deterioration. Tom now receives six to eight hours of support each day with DR Care Solutions continually liaising with the NDIS for more funding to finance this care.

The support includes medication, showering, preparation of all meals, support to attend all medical appointments, domestic tasks, companionship and outings to enjoy life. Importantly, there has been continuity in care with the care team remaining constant and well briefed on Tom's needs and the nature of his condition.

While Tom's Enduring Guardian could have taken the route of placing Tom in a group home, he and Tom's lifelong friends have persevered to give Tom his independence and the good life he deserves.

 

Standing by the client

DR Care Solutions proudly stands by Tom's side as a constant support and sounding board, and "NDIS liaison officer". I check in with Tom once a month to make sure the Life Plan™ we drew up together in 2019 is up to date and that the care he receives meets his expectations. This is followed up with phone calls to his in-home carers and Tom's Enduring Guardian.

 

* Names have been changed to protect the identity and privacy of subjects.

 


If you need support for a loved one whose disability is deteriorating, please reach out to me, Danielle Robertson at DR Care Solutions, for an initial discussion on how to set up the right care, support and assistance for your loved one, at the right time and in the right place.

- Contact Danielle - For An Impartial & Confidential Conversation

 

 

Resources

[1] Plan Institute Vision & Mission

 

 

 

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