Cayt is a girlfriend of mine who I have known for many years. She is a smart, feisty and funny thirty - something who is completing her degree in Social Work. Cayt also has cerebral palsy which affects every aspect of her life. This means that to be as independent as possible she also requires as much support as possible. While she is standing in the pic, she actually uses a powered wheelchair for mobility and a voice output device for communication. Through hard work and commitment she has already achieved more than most able-bodied people. Now, she wants to take the next step - to live independently with her beautiful pup Willow.
Specialist Disability Accommodation is housing that is especially designed for people who have very high support needs. It is funded under the NDIS.
Here is Cayt’s story of her application to obtain SDA from the NDIA. (So far..)
As beings of western society, we elevate our way through life by achieving some standard milestones. These milestones include graduating school, finding work and or study, moving out of home, getting married, having children. Whatever order you do these is up to you, everyone is different. However having a milestone to work toward provides a sense of achievement.
As a thirty-one year old woman, I feel I’m way past meeting my next milestone of moving out of home. However before I’m too hard on myself, I have to remember that having a disability sometimes can put everything else on slow motion. Therefore, I know I have to work that much harder to meet my goals.
I have always known I want to move out of home, however started to get more serious about it four years ago. As a young single woman on the Disability Support Pension, I knew buying a house was unrealistic. I thought I may be able to rent however this too become unrealistic when I realized that all my pension would be used up on rent and I wouldn’t be able to go out to enjoy life and buy what I need. The Department of Housing scheme (rent equals 25% of DSP) was an awesome solution, however the ten- year waiting list is always a deal breaker for everyone wanting Housing.
Therefore when the NDIS announced they were putting a scheme in place to cater the housing needs of Australians with a high needs disability, my Coordinator of Support and I jumped at the opportunity to find out more. This scheme is Specialized Disability Accommodation (SDA). SDA was intended to meet the needs of 6% of NDIS participants, who had higher support needs. The parallel intention was to plant more accessible housing in the community. Learning this, a lot of property developers quickly joined up to be SDA providers and started to plan to build for this market. Another attraction to SDA is that it mirrors the Department of Housing scheme of only asking participants to pay 25% of their DSP as rent.
Image of Cayt and her pup Willow
With the help of my Coordinator of Support, I was quick to do my SDA application. Before long, we found out that this application process, which is called EHOP (Exploring Housing Options/Possibilities), required a lot more detail. My EHOP report which was written by my Coordinator of Support, was forty pages long and included the following documents
· Full personal housing history
· Several occupational therapist reports including functionally description and why I need my house to be accessible with the use of environmental controls and assistive technology
· Letter from a real estate discussing my chances of finding an accessible house to rent
· Letter from department of Housing with what number I was on their waiting list
The EHOP took my Coordinator of Support three months to write, it was an enormous task and took a lot of collaboration between her, my occupational therapist and myself. By February, this year, we had it ready to submit. We submitted it with my plan review as it was that time of the year. At my plan review meeting, the planner was energetic about SDA, in fact the second I walked through her door, she apologized for a minute for finishing an e-mail to the SDA team trying to get a decision. Also, she was unsure to write up my plan before getting a decision, as my supports would differ whether I was moving out this year or not. However, because of the long wait, she did end up writing my plan so it could start.
I should let you know that this planner was not the person that made the decision on whether I would receive SDA or not. Rumour has it that these decisions are being made by a Specialize SDA team within NDIA, with its members scattered around Australia. I have to say I don’t like this approach as no one within this team took the time to come to meet me. Yes we did put everything we could in the EHOP, however without getting to know me and both the good and bad parts of my day, it is most difficult to make a decision about my life. Especially since NDIS structures itself on person cantered approach.
On Tuesday twenty-sixth June, the planner contacted my Coordinator of Support to inform her I wouldn’t be receiving is SDA. The specialized team had submitted documentation of reasoning however we weren’t allowed to have access to this. After my coordinator of support argued that if we were going to appeal this decision we would need to know the reasoning, the planner agreed to summarize the documentation to give to us in both written and verbal form the following Tuesday.
Feeling like my world had been upside down, I agreed to go to the meeting on the Tuesday. I have to say the planner was really apologetic and spoke with nothing but compassion toward me. For this I am very thankful and in no way I blame her. However, although one of my goals ever since my first NDIS plan has been to move out, the planner said SDA was not in line with my NDIS goals. Also it would not be cost effective overall and especially in the way of assistive technology.
Although it wasn’t in the letter, what the planner said next angers me. The planner spoke of my intelligence and my knowledge and ability would allow me navigation to find mainstream housing. Apparently my intelligence signifies my ability to buy a house or be in the rental market. Also, it was hinted if I had an intellectual disability, the decision would be very different. This completely stunned me. With the enormous help of everyone I’m close to, I have worked so very hard to get to where I am today. Each and every day, I work toward being a better and more independent person and let you know I have only the highest expectations of myself! After thirty-one years of being this determined, only to hear I am too intelligent for a funding package which will better my life in so many ways, I have no words!
The meeting continued on. The planner then went on to justify why I don’t need a fully wheelchair accessible house, to support the argument that I have the ability to get mainstream housing. Because my occupational therapist discussed my functionally and my hand control was not enough to have the ability to cook, the reasoning drew upon this, stating that I can’t cook therefore I don’t need an accessible kitchen. At this point, the planner suggested that I could sit in the kitchen door way to call out to my support worker what I need to eat. The same went for the laundry. Although my occupational therapist discussed my ability to turn my washing machine on independently, it was stated that I don’t need an accessible laundry room as I can’t do laundry. If you haven’t figured out by now, I’m big on personal growth. If I did have an accessible kitchen, I have the determination to start to do more independently. I would grow!
The meeting concluded with the planner making me a ‘deal’. This deal stated that “if I found housing to buy or rent before my current plan ended (April), they could guarantee the bathroom would be modified within six months”. Some of my problems with this statement follow:
· Affordability of mainstream housing
· Finding a landlord that was okay that their house was being modified
· Even if the landlord gave me permission to make the bathroom accessible, I would not be able to move in until the bathroom was made accessible. Therefore would I have to pay rent although I’m not living there yet?
This deal is unrealistic with little thought behind it. It is laughable actually! It is no way a compromise to not getting SDA.