The Equality Act

Under the Equality Act, consideration is given towards a situation of ‘being disabled by association’. It’s illegal to discriminate due to association with someone with a disability. This means, that you cannot be discriminated against just because you have a disabled person to care for in your life. Otherwise, that would be considered to be ‘disabled by association’.

This part of the Equality Act has mainly been applied to work-related matters. Such as an employer refusing time-off when a person has someone disabled to care for but allowing flexibility to someone else employed who doesn’t have anyone disabled to care for.

It seems to me regarding direct payments, that ‘the may not rules’ social care apply are then rephrased as ‘cannot’ regarding paying someone for the care they do for someone living with a disabled person who has been assessed as requiring direct payments.

The ‘may not rule’ in turn is changed to a ‘cannot rule’ by professional both non-health trained and health trained individuals working for services and within health and social care. Then it is used to prevent carers who are living within the same home as someone disabled from being able to be employed and paid a wage for the care they supply.

The care which is supplied is of exactly the same nature as that supplied by carers who are paid via direct payments to do the same job. The only difference is those carers also called P.A.’s are not living in the same household as someone disabled.

There is a direct link of discrimination in progress towards someone living in the same household as someone who is disabled. In many cases, it creates the situation of being disabled by association and being denied employment directly due to association with a disabled person who lives in the same home.

I’m not allowed payment although I don’t live with my son, just have him home, for family events, and most importantly, when we go on holiday together.
When he goes on holiday with me he has the same facilities as he has in his flat, his own double bed, and his own bathroom.
So do I, I always choose somewhere that meets this criteria.
When he goes away with day services, the only option SSD will pay for, he has a shared bedroom (he never shared with his brother even when small) often in a narrow single or even worse, single bunk beds (for a man 6ft + tall weighing 19 stone, and no ensuite.
With me, it’s always a holiday with steam rallies and or steam railways and anything else engineering related. Often in Devon so we can see his girlfriend from school days.
With day services, it’s Butlins at Bognor.

Hiya Bowlingbun, The truth is that even though our situations are different, with myself living in the same home as my son and you not living with your son, we are both discriminated against in the same way and by the same organisations. We are discriminated against because we are mothers of a disabled son. The services believe it is okay to use this situation against us and so we are actually disabled by association. There is another way they also discriminate and that is by ‘lack of capacity by association’. Meaning to ignore anything we say relating to our son’s care or health needs by using our children’s lack of capacity as a poor excuse to fizzle out our voices towards attempting to advocating for adult children who lack capacity.
They don’t put forward any consideration to people with learning disabilities…it’s always ‘the basics’…and not the need or quality of life…or the hobbies. It’s so wrong.


Like many parents have found out quite abruptly when you have a child with learning disabilities who lacks capacity you don’t get the option of advocating for them. More so when they become an adult.

However, in unspoken terms, as well as indirect actions by the staff of services it is the case that many parents are simply phased-out from advocating for a child. By staff who are employed by organizations/institutions who also falsely advertise as services who properly support children/or adults with certain levels of learning disabilities.

And that level normally comes hand in hand with most learning disabilities, especially when combined with other disabilities such as autism. The more complex the higher the level of prevention of viewing health or social care records.

Even trying to view these is made difficult if not impossible. It is also impossible to avoid the situation of being disabled by the association of a person cared for who lacks capacity.

All the many years spent talking to professionals are found to be wasted in the darkened alley of the lack of capacity that is used as an excuse to blank parents. Finally, that situation will apply to every conversation held in respect of someone with a lack of capacity. It will be hidden deep within the health or social care files. That’s if it even makes it to the file at all.

Not only that, but it will be realised that all the conversations in order to advocate needs, have really been just one-sided discussions the whole time. Adults who lack capacity are disadvantaged by this system of secrecy. Although it has to be said, that it’s more than likely that a parent’s name is tarnished somewhere in these ‘invisible’ files too.

Files that are only visible to organisations/institutions and their staff who appear free to write what they wish in the files of someone who lacks capacity.

Trying to advocate is also a one-way street and it doesn’t adjoin the same street. That is if you are a parent of someone you care for who lacks capacity.

Information is taken from parents and we are expected to keep giving this information to services and also accept we are treated by association of lack of capacity as also having a lack of capacity to view files.

In fact, it’s a forced situation, whether or not capacity is lacking in a parent and the services think it can continue like this….