ADVOCATING FOR MY BROTHER, MARK

Claire Baines

MY TALK WILL COVER: General advocacy and sisterly involvement Translation service Autism and LD awareness Fighting for Mark’s rights Ensuring Mark’s quality of life and FUN! Things I wish someone had told me at the

start.

Emotional Health Warning!

I’VE ALWAYS BEEN MARK’S ADVOCATE

BIG SISTER REQUIREDMust possess:• A sound grasp of disability rights legislation;• An understanding of stimming, rituals and

the need for patience;• A willingness to challenge outdated,

discriminatory practices; and• A good knowledge of specialist subjects,

including Dad’s Army catchphrases and favourite song lyrics.

Life-long committed requiredApplicants can expect:• Frequent heartbreak• Occasional eureka moments• To lock horns with Social

Services, NHS and other public bodies

• To build a relationship with somebody unpredictable, challenging and inspirational

I don’t remember putting an application in!

MARK’S SUPPORTED TENANCY – A HOME FOR LIFE - WORRIES

Does this mean I’m going to lose my brother into the care system?

How involved will I be? How much of a say will I

have? What if I disagree with a

choice the support staff make on Mark’s behalf?

How do I trust new people with my precious little brother?

MARK’S SUPPORTED TENANCY – A HOME FOR LIFE – THE REALITY Mark is supported to live an

independent life. He is in no way “institutionalised”.

He has grown in confidence and established new relationships. Is not limited by my assumptions of his capabilities

I have more time and more energy to advocate for Mark.

If I have a point, I raise it. If I have ideas I share them. If I have a complaint, I can talk to people about it.

Trust comes with time. Open-door policy. Spot-checks.

o Mark has a part-time job

o Goes to “rebound therapy” (trampolining” every week

o Enjoys walking groupo And plays an active

part in family life

“WHAT’S HE TRYING TO SAY?”

AUTISM AWARENESS Does he take sugar? Enquiries by the general public Respect – Would you ask about somebody

else’s personal details in front of them? Public services, public places, authorities

– The Autism Act, The Autism Strategy Relatives, neighbours and dodgy,

outdated views – “Send him to an institution!”

Being a bit fierce

“MARK DESERVES…”

Please sir, can I have some more?

You might feel like you have to be a bit of “a pest” to get the best for your loved one!

Try not to feel guilty. Don’t give up and always remember to enlist the help of others!

MARK’S TEETH – DIGNITY AND ADEQUATE MEDICAL CARE

Summer 2013 – Best Interests Meeting 1 Summer 2013 – Best Interests Meeting 2 February 2014 – Dental surgery Post February 2014 – The Fall-out… January 2015 – First check-up after major

dental surgery Still working on“Deputyship”…

“MARK WOULD LIKE A HOLIDAY…”

BANG A DRUM!In summary: Don’t be prepared to challenge the “experts”.

Ultimately you’re the expert. Make contacts. Get your name known in the

disability networks. Choose your battles or you’ll be exhausted. If you’re nervous face-to-face, prepare a list of

points of questions in advance. Don’t be afraid to ask what on earth the

professionals mean! Pester-power isn’t just for kids! If you’re not

being heard, make them listen. You might just start a revolution along the way.

USEFUL RESOURCES & CONTACTS

The United Nations Convention on the Rights of People with Disabilities - http://www.equalityhumanrights.com/private-and-public-sector-guidance/public-sector-providers/human-rights-guidance/a-guide-to-the-un-disability-convention

Becoming a deputy - https://www.gov.uk/become-deputy/overview

Autism Act Statutory Guidance, explained by the NAS - http://www.autism.org.uk/Working-with/Autism-strategy/The-autism-strategy-an-overview/What-does-the-statutory-guidance-mean-for-me.aspx

Care Act 2014 - http://www.legislation.gov.uk/ukpga/2014/23/contents/enacted

Claire Baines – clairebaines@hotmail.co.uk