Our ability to help with the bigger picture of life: Milly’s success story. By Lucy Acheson (Housing Team OT)
I recently met a young 21 year old woman (who I will call Milly) who was diagnosed with Ehlers-Danlos Syndrome in her teens and latterly with an unknown neuromuscular condition causing paraplegia. This has meant that she now requires a wheelchair for mobility and hoist for transfers and is at risk of frequent joint dislocation with any musculoskeletal effort. Milly’s parents had to sell their family home and have been renting for a number of years so that they were able to provide an adequate home environment and the equipment and care that she needed.
Over a number of years Milly’s mother had learned a lot about working with the NDIA to enable Milly to live a quality life but she was always aware that their current rented home environment didn’t work for Milly and was often quite dangerous. Milly had severed two tendons while cutting a watermelon, received third degree burns while carrying a coffee in her lap and had cut her foot when she dropped a knife. Even with slight modifications like giving Milly the larger master bedroom and taking off the bathroom door, life was always about compromises and increased effort to make the home work. Simple things were always frustrating, like Milly couldn’t manage a heavy fire rated external door and so couldn’t access the apartment independently or the thick pile on the carpet in the bedroom meant that moving the hoist or wheelchair required a great deal of effort. Milly was at risk of dislocating a joint just opening the fridge door.
Milly’s mother also recognised that Milly, like any young adult, would of course want to live independently from her family at some stage as she was completing her degree and would soon be looking for a job. Her parents also wanted Milly to have support services and accommodation that was stable and consistent, independent of her parents as they got older. The family had become aware that SDA or Specialist Disability Accommodation was a new area of funding that Milly might be eligible for.
The great news is that Milly was approved for SDA, High Physical Support! She will receive extra funding for an apartment to live in on her own that is designed to a High Physical Support standard. This means that it will be set up to enable the use of a ceiling hoist, fully accessible bathroom and kitchen with home automation features and oncall 24 hour services as well as having her own 1:1 supports.
The really exciting news is that Milly and her family have already moved into a 3 bed unit in the same block and Milly will be moving into her own unit on another floor as soon as it is finished. Milly’s family are going to be able to provide the informal care and support that they want to continue to provide but know that they can go to work or away on a holiday and that Milly has all the services and back up she requires to remain independent but safe, living just upstairs. Milly’s mother said she feels like they have won Lotto!
Milly and her mother have advised that anyone wanting to see if they are eligible for SDA should;
- Ensure that seeking appropriate accommodation is a goal that has funding in their NDIS Plan. An SDA report can take up to 30 hours of assessment, research and report writing.
- Not everyone will fit the criteria for SDA. Get a good SDA report done – an Occupational Therapist that specialises in SDA Assessments is recommended. Once the report is done it is submitted to the SDA panel for approval – if they agree with the assessor’s justification.
- If you identify with the OT what equipment is going to be needed for your new home and the quotes can be included in the SDA report, this will save time and money later as you will need to get further Assistive Technology reports done prior to installation.
- Make sure that your Support co-ordinator follows up with actioning and following the progress of your report (Milly’s report ended up on someone’s desk for a few months as they did not know how to submit it to the SDA panel)
- You may be approved for SDA but it may take a while for something to be available in the area you want. Lots of different accommodation options are being planned but they will take time to be built.
- Be prepared that there will be a period of adjustment and transition to both a new environment and supports. Quite a few hours will need to be allocated in your plan for new equipment and the transition / problem solving process. An Occupational Therapist will need plenty of time to assist the participant to become familiar with new equipment and technology.
- Some equipment can be funded by the NDIS – items that are specific to your care and disability but you will need to fund a lot of your own items just as you would need to moving into any home.
Milly’s apartment building is in a great location next to the metro, shops and community facilities. Milly is already enjoying being able to go to the supermarket and travel to Uni independently and is going shopping for appliances that are easier to use. She can’t wait for the move in to her own space and has been active in the consultation process to choose the on-site concierge provider that will back up her own scheduled support services. We are planning to visit Milly in her new home to hear more about how she is managing and any tips or advice she can give NDIS participants looking at SDA.