Narissa

My work of art: meaningful relationships & safeguards are the foundation of my home

Over the past eleven years there has been three distinct periods all of which have had a positive or direct impact on my life and supports. Throughout these stages in my life, I have created meaningful relationships—some still look the same, some have changed and some have moved on.

Early adulthood, university & self discovery

When studying at university, I lived independently for three years with friends who were also my room mates and informal supports (no formal funding). Throughout this time, I lived in accommodation settings such as:

• On campus: I engaged a fellow student to assist me with my support in exchange for subsidised rent. This arrangement fizzled out in its infancy, leading to a search for a new solution.
• Purpose built apartment: Through word of mouth within my university community I came across an apartment that had been purpose built for wheelchair access. Together with friends we privately rented this apartment and our student life was ignited.

This stage of my life was like a complex web. Surrounding my informal supports was a very carefully balanced operation of relationships between friends and family. Due to the interweaving of friendship and support, this often caused social isolation and limited the capacity for me to make new friends and pathways for my life.

With a little of my degree left to complete, my friendship and support group were headed in different life directions. I unexpectedly found myself at a crossroad with no support. It was here I realised the importance of being clear with the vision for my life – a life where I am happy, healthy, valued for my distinctiveness and the decisions I make.

My learning’s were:

• Understanding roles and separating them: the difference between a friend and a person who assists with support. Due to the support being linked with friendship, when the friendship broke down this had a direct impact on my support and in turn my health.
• Realistic expectations: planning for the future rather than living in the moment. It was idealistic of me to believe that this time of my life would forever be like an episode of the sitcom “Friends”.

Young adulthood, work life & house sharing

I set about the journey of gaining formal paid supports in my life. However, I experienced rigid service structures such as a bed curfews and restricted choices of workers and how my supports happened - leading to social isolation. Friends did not feel comfortable visiting anymore, due to restrictions placed upon them by paid workers, informing them it was my bed time because they finished their shift at 10pm. I then discovered self-directed support through a host provider, which enabled me to have choice and control over my supports and services. My friends started visiting again!

I started building new friendships, networks and safeguards within my community by enrolling in a leadership program, gaining employment and living independently with three housemates of my choice. It was here that I started to build natural safeguards and the importance of being in the driver’s seat, taking control of my life, supports and services.

My learnings were:

• Leadership: learning practical skills such as personality types, how to run a meeting, team dynamics, and the concept that leadership isn’t about going it alone, it’s about building an environment that influences and aids the support collectively to accomplish a common task. To me this all directly correlated to self directing and managing my supports and services.
• Safeguards: coupled with leadership I started laying the foundations of building intentional and natural safeguards around me through strategy, patience and a bit of risk taking. I built friendships and relationships through involving myself in activities of interest within my community. I learnt that some safeguards will last a lifetime and some will open the door to new ones by sharing common experiences.

Adulthood, career & commitment

I live independently with my fiancé in a beautiful little yellow cottage, with modifications and have a very understanding landlord who is committed to our lease. I manage my own small business from our home office and self-direct my own supports and services.

I engaged a former work colleague whose core values aligned with mine. With my leadership she is now a paid contractor who assists me with the operations of my supports and services.

Our home is nestled within a community where I have easy access to shops and public transport, feel safe and involved. Neighbours visit, people wave, friends stay over, family get together and my supports and services happen around this.

I maintain a good life for myself by:

• Being happy: knowing I have choice and control over my life. Loving myself and those around me. Having flexibility not only with my supports and services but my work life, to take some time out, sip on a cup of tea outside in the sun and potter around in our veggie garden.
• Continually learning: taking the time to reflect, plan, change and grow. I make time each day to look at what is and is not working within my business, life and supports. I meet monthly with my support team, family and key networks to work together in accomplishing supports and services that work for me.

I am proud of my work of art that hangs in my home everyday where I am surrounded with meaningful relationships and safeguards of my choice.

Home is where my heart is: renting, access & modifications

Living in my own home, of my choice, is one of the most liberating facets of my life. From the age of 17 to 20, every six to twelve months I was moving rental properties. I rented houses and apartments privately through real estates, which would sell or have lease changes. This made it difficult for me to have stability and the freedom to make changes. This was not sustainable and I thought long and hard about my options. I decided public housing was not in my best interest. It did not suit my short and long term goals due to the restrictions it placed upon my life.

I approached two key people in my life with an idea. I asked if it would be possible for them to purchase a property as an investment which I could rent from them. They would have a very loyal long term tenant who looked after and loved their property. I would have an understanding landlord who is committed to the lease and any needed modifications.

When entering this agreement I had a few requirements for the home. It needed to be ground level on a flat block of land, with a yard and a minimum of 3 bedrooms. Its location needed to be walking distance to public transport, within a small supportive community that had a country feel. Both parties agreed my requirements needed to fit within the landlords set budget. The agreement with the landlords is just like any other rental property adhering to the Residential Tenancies Authority rules.

When purchasing the property, the landlords incorporated reasonable modification cost into the budget such as bathroom, widening of doorways, tiled flooring, lowered light switches and remote controlled fans. Anything out of this scope such as my request for an electric glass sliding door, I sourced separate funding.

Tiled floors: are throughout the home which makes it easier to roll the hoist. It eliminates risks for my breathing and it is easier to keep clean.

Bathroom: together we designed a bathroom that worked for me. I required accessibility to a shower and a bath tub. The bath has been raised to allow a hoist to roll under and lower me into the tub. This also combines as a storage place for the hoist. The shower is widened and open to allow easy access for a shower chair. A new door way was installed between my bedroom and the bathroom to create privacy whilst transferring.

Light switches and remote control fans: enable me to have control over lighting and cooling throughout the home. It has often meant, if I have been alone I can turn the light on or switch everything off before leaving the home.

Electric glass sliding door: was a major modification to the home. We trialled several types of systems that would enable me independent access. The landlords, myself and Home Assist Secure worked together to find the solution that best suited. This process took almost two years to get right.

These home modifications and the arrangement with my landlord has allowed me freedom, flexibility and control over my home. I can access every part of the house. I can make modifications to the home as my health needs change without the hassles and delay of red tape.

I love my beautiful little yellow cottage that I call home. I can come and go freely from my home and I feel safe and happy.

Views and experiences included on this site do not necessarily reflect the views of the Queensland Government or indicate a commitment to a particular course of action.