Double disabled couple

beadles93

Hi everyone 
Both me and my partner have cerebral palsy spastic quadriplegia full-time wheelchair user. Just wondering how we move things forward in the bedroom. I've done some research doesn't seem a lot of options in UK. Some carers in past have more willing than others. Which is fine everyone has there choice/opinion but we are at will and choices of others.

Hannah_Alumni

Hello @beadles93

I'm afraid I don't have a lot of advice in this area. But wanted to tag @Richard_Scope who is our Cerebral Palsy Programme Lead. Scope has a brilliant Cerebral Palsy Network and hopefully you'll be able to get more advice and support  

beadles93

@Hannah_Scope thank you ever so much. I've done a little research most information was in USA. Our college provided help but weren't together then. Had offers from previous carers to help. However current ones are unwilling I'm going around in circles..

Richard_Scope

Hi @beadles93

For healthcare professionals/care workers it is illegal NOT to support disabled people to enjoy the same pleasures as others enjoy in the privacy of their own homes (Equality Act 2010, Human Rights Act 1998).

I'm not sure about your living situation but too many supported living environments are held back by their trustees and governors. You need to inform them that it is illegal NOT to support disabled people to enjoy the same pleasures as others enjoy in the privacy of their own homes. Policies need to be drawn up for procedures to secure the safety and reputation of the home, at the same time providing this support.

I am not making any assumptions about your capacity to consent or that of your partner, I am including this as mental capacity is softened cited by care companies or supported living providers. 

The mental capacity required for consent to sex is not at a high level and it should not be assumed that any person lacks it. 

If a person truly lacks the mental capacity to make decisions about sex because they have been assessed as being unable to understand what is involved and any risks involved for them, then it is important to consider whether they could be helped by tailored sex and relationship education. If so, then you may have a duty to provide it before taking any measures to restrict their life. They still have relevant human rights.

I recommend “Supporting Disabled People with their Sexual Lives – A Clear Guide for Health and Social Care Professionals” Tuppy Owens and Claire de Than (2015) Jessica Kingsley Publishers. 

beadles93

@Richard_Scope I am aware of this but is non starter with carers we have. We both live in our home with 24 hr care me direct payment employing own P.A's. He uses direct payment to employ an agency. He already had conversation with them they see as abuse. Eventhough we have mental capacity. He had one carer removed as she said if we staying in same room on holiday, she was driving him straight home! My P.A are just behind the door it doesn't happen we aren't like normal people should happy with what I've got. Why do ever want live together and get married? That's there attitude. So we are stuck 

Richard_Scope

It is a clear infringement of your human rights. You and your partner have the right to a romantic/sexual life.
Have you requested meetings with the agency that provides PA's for your partner? 

beadles93

Yes we have trust me I've had plenty of argument with them over his mental capacity. The need to use a waver for personal decisions. Even down to simple things of buying and taking cough medicine, which they won't give him because prescribed by doctor