The Mental Health Toll Of Some Inaccessible Disability Services

NeuroNavDan28

I am not looking for toxic positivity or to be told how I should feel. Please do not redirect me to focus on my strengths. I just want my experience to be validated and acknowledged.

The Failure Of The Standard Model

I have been using a supported living, move-on service that claims to be disability-specific. However, it applies a neurotypical standard of support and expectations onto residents rather than a collaborative, neuro-affirming curriculum of support. Their version of 'independence' is fundamentally inaccessible to an autistic person.

I mentioned that the model is unaccommodating to the manager and she asked what they should do to accommodate me. I was effectively asked to design a specialised support model for a service that should already be accessible by default. So, I have been forced to use a model that does not account for my differences throughout most of my time with the service. This has made move-out preparation difficult.

The Impact Of Executive Function Barriers

The framework assumes residents have the same executive function and processing to complete packing and cleaning simultaneously, can go to the office whenever help is needed, and can easily verbalise struggles. There is a risk that they will let the resident lead the support and then they will follow their steps, which is a form of abandonment for a vulnerable adult.

The Mental Health Toll Of Inaccessibility

This inaccessible support has impacted my mental health severely, especially as I move out today. It has made me question how I am going to cope with the unaccommodating world in the future, leading to the thought of ending of my life as a result of being unable to cope with navigating the system any longer.

It reminded me of a BBC story about an autistic boy who lost his life due to the failures of the mental health support system after constantly shouting for support and being ignored on the waiting list. Even with his mother’s intervention, nothing changed.

My support worker did not ensure I had all my items ready for my new property. I was initially told that I would be getting some of my items from a furniture project and then later told I may not get them. Now I am in a state of environmental instability. I have to be thinking about what to have for breakfast when I do not have a cooker and my fridge is not working because the staff did not check it before asking them to collect it. I have also been thinking about how I am going to hang my clothes without wardrobe. They failed is a result of my former support worker’s failure to provide neuro-affirming preparation. As a result, I have been feeling stressed, abandoned, and low.

The Assumption Of “Choosing” Not To Seek Help

The majority of mental health services is not inclusive. I have been anticipating being asked if I am getting mental health support which assumes that I am choosing not to seek help. This ignores the barriers people with disabilities face and the fact that the support offered is often inaccessible by design.

The Cycle Of Standard Support

I discovered that one of the personal independence workers at a social group is part of a service that I was referred to by my service. I have been anxious that I may receive standard support from her too, perpetuating the cycle. It is a protective thought rather than a catastrophic one. It is an assessment based on the pattern of systemic failure I have experienced.

MW123

@NeuroNavDan28

What you have described shows a pattern of being placed in situations that were never accessible or designed with your needs in mind. Being asked to “design your own accommodations” in a service that claims to be specialist is a clear example of the system failing to provide what it says it offers.

Moving today without working appliances, without essential items, and without the preparation you should have been supported with is not something you created. It is the result of support that did not meet the standard you were entitled to expect. The environmental instability you are dealing with would have a significant impact on anyone, and it makes sense that this has left you feeling stressed, low, and abandoned.

The anxiety you described about receiving more of the same support from the new worker also fits with the pattern you have experienced. It is not a reaction “out of nowhere”; it is a response to repeated inaccessibility and unmet needs.

You have been clear about the toll this has taken on your mental health, and the way you have connected it to wider systemic failures shows how much you have had to carry without the support that should have been in place. Your experience, and the impact it has had on you, is valid.

Adrian_Scope

Hi @NeuroNavDan28,

I’m really sorry this has been your experience.

Being expected to fit into a system that doesn’t work for you while you’re already under pressure must be really tough and I think it's fair to say that being left without the right support while moving, and having to deal with basic living things not being in place, would be overwhelming for anyone.

I think it's completely understandable that this has affected your mental health and the way you’ve been supported sounds inconsistent and inaccessible.

I'm going to send you a quick email to see if there's anything we can support you with, so please look out for it. In the meantime, thank you for sharing this here.

NeuroNavDan28

Hello @MW123,

I know it was not something I created. I already stated in my post that my situation was a result of the service’s failure to provide neuro-affirming preparation. So, they are clearly responsible for my problem.

It is a definitely a pattern. I have also experienced inaccessibility at places like at university. I was expected to manage my time and communicate in writing in the same way as other students. My differences in these skills were viewed as difficulties that many students had which can be overcome with support rather than permanent neurological differences that need accommodating. It is only natural that my mind is trying to protect me from further system failures I have had to experience.

The service’s actions is continuing to significantly impact my well-being. I have been feeling resentment towards them, as my family and I have been left to resolve a crisis we did not cause.

NeuroNavDan28

Hello @Adrian_Scope,

Any experience like this is expected to impact someone’s mental health.

It is definitely tough to be expected to fit into a system that does not work for many neurodivergent individuals. The systemic barriers are essentially being ignored and we are being asked to change our neurological differences when they are our biological reality.

Advice on a section of the website given to people with disabilities as if they are neurotypical. It mentions that it can help to write down a few things you want to discuss on paper or your phone and bringing notes with you to the appointment so you can make sure you cover what you want to say. It does not account for their processing, communication, and executive function differences. Identifying what your needs can be a barrier to writing things down which is a task in itself because before they can write down what they want to say, they have to perform additional labour invisible to others.

I do not like that the page said there are things you can do to speak up for yourselves when seeing GPs, hospital doctors and other medical professionals because it suggests that self advocating is the barrier to getting support rather than the inaccessible systems. It implies that the system is fine and people with disabilities have to adjust to fit within it. A neurodivergent citizen cannot advocate for themselves within an inaccessible system. Many professionals do not have the training in autism so will be unable to understand their needs. We do not even get listened to when we do share our disability.

Thank you for the email with the support options. I will have a look at them.

Thank you and @MW123 for your support. I really appreciate it.

dolfrog

Hi @NeuroNavDan28, and @Adrian_Scope,

Adrian already knows that I have Auditory Processing Disorder the listening disability my neurological difference.

Auditory Processing Disorder can be one of the multiple issues that can combine to be part of an individuals autism.

I can have problems processing and understanding what my ears hear, especially rapid speech, and after a conversation has finished my auditory memory can sometimes forget all of what had been discussed. I am not able to understand multiple verbal instructions

I need to have accommodations provided by those in the system to match my alternative compensating skills and abilities I have developed using my cognitive strengths to work around my lifelong cognitive limitations.

After my clinical diagnosis of Auditory Processing Disorder in my late 40s, I found out online that I had become a Visual Spatial Learner using my Visual cognitive strengths to work around my lifelong auditory limitations. This explains that I think in pictures, diagrams, charts, and practical demonstrations. So for instance from a meeting with my GP, I need a written summary of of our discussion, possibly sent by email.

So those working in the system need to understand the multiple types of neurological limitations an individual may have, and more importantly be able to identify the possible alternative compensating skills and abilities each individual may develop to work around their lifelong limitations using their personal cognitive strengths. And they need to be able to accommodate each individual's support needs.