OK, so this might a different read to other pages but I believe it’s important to know your rights.

You might have the right to the same treatment as everyone else, but this is not always what happens in daily life.  That there needs to be the United Nations Convention of the Rights of Persons with Disabilities (UNCRPD) is disappointing. This shows that disabled people throughout the world experience discrimination in a way that other groups of people may not. For instance, there is no convention for race or gender.

Key points to note

The UNCRPD is a wordy document, but fortunately for those of us with communication impairment it is explicit.  These articles state the use of augmentative and alternative communication (AAC) for people with communication impairments is essential.

The purpose of the UNCRPD is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by people with disabilities. In other words to ensure disabled people are treated equally to all other people in all walks of life.

(Some of) the principles within the convention are:

• That disability is an evolving concept. It is a consequence of the interaction between people and their environments. This means no two situations might be the same. The result is full and effective participation in society can be prevented in numerous ways. This includes the attitude and behavior of others, available resources or environmental barriers.
• There is a concern is that despite the UNCRPD and undertakings by governments around the world things are not changing. The consequence is people with disabilities continue to face barriers as equal members of society.
• These barriers include accessibility to the physical, social, economic and cultural environment, to health and education and to information and communication.  
• The convention demands signatories, including the UK, should promote equality for all. Including those who require more intensive support, specifically those with disabilities.
• It also states people with disabilities have the right to individual autonomy and independence. This includes the freedom to make their own choices, including where to live and with whom,
• This should include disabled people being actively involved in decision-making processes.  Including policies and programmes directly concerning them.

Key support highlighted in the UNCRPD

The  UNCRPD articles state key areas where facilitation and resources are needed.  This highlights communication, life-long learning, specialist teaching plus ongoing and intensive support. As a result, having achieved access to communication resources there is the next step.  Next, there must be continuity of communication support throughout life. Without this many AAC users may risk not becoming functional communicators, particularly through periods of transition.

Safeguarding: abuse and neglect

I’m not going to go into detail here but I can say I have had my fair share of ‘not so nice’ things happen over the years. This means I believe it is essential to know your rights. Hopefully, you will never need to use this information, but forewarned is forearmed. We all have the equal right to respect, dignity and to feel safe. At all times!

Having well-trained staff at school, and living in a loving family home does not always prepare us for the future.  The Social Care Institute of Excellence (2021) states the definition of safeguarding is to keep safe from harm, abuse and/or neglect individuals who need social care.  Living independently we probably don’t have someone with oversight of our care.  This means there is a need to know your rights.

When I train my own team we do a much more in-depth session than the statutory safeguarding courses.  In-depth because it is directly related to me, my experiences and the things they need to consider.  This is always an eye-opener for others. Safeguarding includes omission by neglect which covers many key areas of life.  Understand what is acceptable behaviour, and when our care and support needs are not being met.  Then, if you know your rights what to do about it if things go wrong.

High-risk groups

People with a disability and those with communication impairments are at higher risk of abuse than others. So if, like me, you fall into both groups the risk factor increases.

Intentional behaviour, or not?

If something happens that isn’t right then as individuals we need to ask ourselves some questions.  Is the action an accident or a mistake? Could it be bourne out of ignorance or an unconscious action? Might it be addressed with training? Was it a one-off situation or is there a pattern to this?  Could the action have been deliberate?  Whatever the cause it will need some type of remedial action proportionate to the incident.  So if it is a one-off accident, the personal assistant is mortified and shows they are sorry we might discuss it, learn from what happened and let it go.  If the same thing happens again then this might warrant further (and possibly immediate) action.

I now have in place a set of actions triggered by a potentially difficult situation so I can address things at the earliest stage.

Types of abuse or neglect

There are 16 identified types of adult abuse or neglect.  The ones everyone thinks about immediately when the topic is raised are physical, emotional and sexual abuse, and if training is provided at school then these are the main areas usually covered.

I’m not covering here abuse irrelevant to my own current lived experience. This is domestic abuse, female genital mutilation, modern slavery, honor-based violence or forced marriage.  I’m also here not covering abuse that might originate outside your home.  Examples might include cybercrime, hate crime, and discriminatory abuse.  Finally, I’m not covering self-neglect because I have 24-hour support and rely on others (under direction) to do things like ensuring my food is cooked and my clothes are clean.

This leaves 4 categories where I’ve found the need to do more research. This has included reading, then talking to others, and now providing training to my team.  These include:

Financial or material abuse

Sadly we are vulnerable to people accessing our finances and possessions. We need to let people into our homes and private lives.  Whilst protecting pin numbers and keeping data secure is essential there are many cases of unscrupulous people taking advantage.  This may range from ‘borrowing money’ from a purse, mislaying gift cards/tokens, or using a credit card unlawfully. Or, manipulating a situation to ‘borrow’ your van or ordering extra food on your online delivery that you never see in your fridge.

Neglect including omission

Simple actions like not cleaning your glasses or hearing aids, or not giving you a communication aid are serious infringements of your rights.  In addition not charging equipment as directed might mean being unable to go out or communicate. Other things can be the failure to clean your face after a meal, or your teeth properly, or forgetting to do your hair.  Or, going out with you and ‘forgetting’ appropriate weather wear.  These all sound like little things, and mistakes happen. But the result of doing this on an ongoing basis can be detrimental to your well-being.

Organizational abuse

I had a time when my support was organized via an agency.  There were constant issues with staff due to a high turnover.  This appeared to be because when the girls had applied for work it was not clear they would need to do overnights. There were constant problems recruiting staff. At short notice, the agency frequently didn’t have cover so my mum had to keep stepping in to help.  There were lots of issues around variable standards of care and inappropriate attitudes and behavior.  When things weren’t going well and I needed family help the agency tried to ban me from speaking with my parents. Their explanation was it would ‘make me more independent’.

These experiences led me to setting up my own team.  The result is I have control of training and the way I want to live.  And I hope the proof is that when someone joins the team they tend to stay.

‘Mate’ crime

This is faking a friendship for benefit.  This can vary from someone who wants to ‘borrow’ money with no intention of repaying it. It might include asking you to buy things for them. Or wanting you to do things you don’t want to do. Simple examples might be you giving people lifts when you aren’t going their way, or buying them ‘gifts’. There can be really subtle pressure and it can be incredibly hard to say ‘no’ for fear of not having the support you need.  You can read an article on my blog about learning to say no.

Know your rights

As I’ve said it is not enough to just know your rights. It is important to be able to take appropriate action when needed.  To be able to call on emergency help if needed.  This includes having access to non-judgmental supporters who will listen and facilitate you to make a disclosure. Living independently and running my own team means not whistle-blowing to a manager.  The need may never arise but I now recommend having robust procedures and processes in place to deal with any eventuality.

Did you know that your local social services have a duty of care for all vulnerable adults in their area? And, this includes those they do not fund.  If something goes wrong they can be called upon for support.  So for instance when first at uni there was an incident with a staff member where I ended up in A&E.  My funding was from my hometown, but the local social services team was notified and checked on what happened.