In this guest article, Kiana Kalantar-Hormozi, an activist, artist and filmmaker, gives her views on what actions are required to make Independent Living Support happen.
What needs to happen?
At an Iriss event in November 2021, I told you of my personal experiences and suggested ways to move out of the 'care crisis', and into an Independent Living Support (ILS) system that upholds equality and human rights.
So, what is needed to make this happen?
Looking forward, I say the solution lies in strong decision-making. There is no real problem to be solved. We do not need evidence in order to give people their human rights through Independent Living Support.
What we need is action on the following points:
Budgets
The first decisive action the government can take to fix Independent Living Support is to give every single person who needs personal support or care the budget they require. This is personalisation in practice, without the need for tick-box exercises.
We do not need to overly complicate the assessment criteria. If a person needs support to complete a task they would otherwise be able to complete independently if they did not have a disability/health condition, then they require paid support.
I have Spinal Muscular Atrophy (SMA) Type 2: I need support not only to go to the bathroom or shower but also to do exercises to stay healthy. I cannot raise my arms above my head or even move my elbows to the middle of my table independently. I cannot cough strongly enough to clear my throat if I choke. Without intervention this can be fatal.
All of these realities are medically-evidenced facts of SMA Type 2, so further medical assessment and tick-box exercises only add to bureaucratic red-tape and make administration of an Independent Living Support system more costly. Budgets should look at ILS holistically, including assistive technology, ranging from appropriate wheelchairs not currently available on the NHS, to current or future robotic home support solutions.
Workforce / technology
The second issue to address is how we recruit, train and pay an effective, professional workforce to meet the requirements of the people who need Independent Living Support. This is critically important as too often people receive inadequate, even damaging support, which stems from a charity model ideology, rather than from a belief that everyone deserves an equal playing field and to have their human rights upheld.
We can address these issues by facilitating disabled people or those with health conditions to tell us what they require – to create training programmes led by them where they are paid to prepare the workforce for the real job they need to do. Independent Living Support jobs should be seen as a professional, comprising university or college training which leads to long-term employment. Given the specificity and complexity of many ILS roles, jobs should not be seen as a stepping-stone to a better opportunity. This leaves disabled people in a constant loop of hiring and training, affecting not only their life, but also their health.
As such, the remuneration for these jobs should be exceedingly higher than the current rates and also proportional to the complexity of the specific Independent Living Support required. A weekend overnight shift cannot be given the same remuneration as a morning or evening shift; supporting an ambulatory person with lighter tasks cannot be remunerated the same as supporting a person with limited physical function.
Legislation
The right to Independent Living Support should be solidified in the legislature, ensuring disabled people have basic human rights. While on the face of it, disabled people 'have' human rights, they do not have the means to access those rights, or to ensure their rights are not violated. We may have the right to a private life, but if we do not have bodily autonomy or agency to choose where we live, work and travel to, then in effect we don’t have that right.
We also need to ensure Independent Living Support is not means-tested – that access to human rights is not means-tested. The Care Tax is a double taxation levied on disabled people who need support and receive a budget through self-directed support, which is due to their personal support needs being classed 'social care'. This is despite the government bringing in Frank’s Law on 1 April 2019 to ensure 'free personal care' for everyone, after years of campaigning. It is a horribly cruel reality of word play and bureaucracy in our current system, with charges that cause people to live in extreme poverty or forego essential support.
Evidence
At the event in November, Robert Sanders from Iriss discussed the [lack of] evidence in supporting innovative methods and solutions to our current 'care crisis'. The lack of evidence is problematic, as it is, at best, from the viewpoint of those who do not require Independent Living Support, and at worst, from an ableist viewpoint which upholds the idea of care homes and respite centres being the norm.
My personal view is that a lack of evidence is often used against disabled people. In the NHS, supposed 'lack of evidence' was used to justify decisions to not fund life-saving/changing treatment for adults with Spinal Muscular Atrophy – medicine which I emphasise, is extremely expensive. As pressure grew from the SMA community and more evidence was published in medical journals, treatments became available to more age groups including adults.
SMA, as a health condition in itself, does not change genetically over time or with age. It is true that adults will likely see less dramatic improvements than children due to motor neuron loss, muscle wasting and the simple logic that gaining lost ability is much more difficult than maintaining it.
It is completely nonsensical and tautologic to withhold potentially life-changing medication from SMA adults on the basis that there is lack of evidence in a population who are unable to access the treatment. The situation with our current 'social care' system is not so different.
Conclusion
As a person whose life depends on 24-hour Independent Living Support in one form or another, I will say that the issue at hand is not actually complex. We do not need to wait for evidence, there is no unsolved problem without a solution.
There are actions to be taken and specifically in the order of budgets, workforce and legislation. Choice is necessary, evidence is not.
Independent Living Support is a pillar of our human rights. We must put our money where our values are. And that is a choice for government leaders to make, and soon.
Related resources
Listen to Kiana speak about a new model for support for independent living on the Iriss.fm podcast. She talks about the 'problem with social care' and its associated language which doesn't deliver on human rights. She also criticises over-reliance on unpaid care, recognising that this reliance isn't always wanted or chosen, and hampers disabled people's independence and even health. For some disabled people, there are risks of abuse in the carer/cared-for relationships that are seldom spoken about. Kiana also highlights how young people and disabled people are lost in the dominant narrative that focuses on older people, and the unrealised potential of self-directed support - with the need for better training, staff support, remuneration and recognition of staff's skills as part of this.
Read more about what is needed for change and the calls to action, which came out of the Iriss event in November 2021.
About the author
Kiana Kalantar-Hormozi is an artist, filmmaker and activist. She was nominated one of the 30, most inspirational women in Scotland under the age of 30 in 2017, and was Muscular Dystrophy UK Campaigner of the Year in 2018.
Her hip-hop protest film ‘Tax on me’ tackles the care tax in Scotland, highlighting double standards on human rights and the injustice of disabled people being charged for support to live their daily lives.
She has a BA (Hons) from the University of Stirling in Film and Media/Psychology, an MA in Film from the Screen Academy Scotland, and an LLB Law from the Open University.
