Pathological Demand Avoidance support for parents

janet O'Shaughnessy profile

Project by janet O'Shaughnessy

Pathological Demand Avoidance support for parents

Pathological Demand Avoidance support for parents

janet O'Shaughnessy profile

Project by janet O'Shaughnessy

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£600 target 2 days left
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I aim to set up a not for profit company to help parents of PDA children and young adults. The system is mostly, stacked against parents.

I have a vision to help parents of PDAers, to get their needs met, by starting a charity. 

I myself, am a warrior parent of an adorable PDA, autistic young lady.  Throughout her life, I have been forced to advocate on her behalf to get even her basic needs met.  She presents with violent, complex behaviour, so I had to do this on top of being a carer 24/7, most days taking a beating, or having my home and belongings trashed.

Our family situation, led to the decline in my physical health as I now suffer badly with rheumatoid arthritis.  It also led to the breakdown of my business and caused extreme financial hardships.  I had to pay for any reports needed, which cost thousands, to back up my constant fights. Fights that came at me on a conveyor belt, I would think that one was over, but only to find another one was waiting. It has been relentless.

These battles started with doctors, then her EHCP (well statement as it was called back then), not to mention schools and the myriad of problems that arose around her education, behaviour and violence and the worst one of all, the social care team, who took me to court many times, to try and pull the funding of her social care, that took me 4 years to fight for. That battle goes on as we speak.

Her needs are currently being met, yet to have them met, means a high cost to the public purse, and for that reason, the LA are forcing a move to an inappropriate provision.  Not only will this cost the public purse more in the long run, it is cruel and heartless, to take a girl who has been let down all her life, away from a residential home, which she is happy and thriving in.  In the one year she has been there, she has made progress, for the first time in her life, in all aspects, ie. social, emotional, educationally etc. To her, this is her home, not a provision or setting.  It is also her own wish to remain there, but as she lacks capacity, due to learning disabilities, her own wishes are overlooked.

The constant fight has ground me down and I have had to sell my belongings to fund private reports, diagnosis and legal advice.  I do not qualify for legal aid, yet the high cost of legal representation is way out of my reach financially, so I have been forced to act as solicitor and barrister, as well as my own secretary and assistant therein. It has been draining and I am fully aware that not many people have either the time or the nous to be able to do this.  I am a bit like a dog with a bone.  I see an injustice and I have to fight it until I drop. My daughter depends on me to.

Due to suffering all this, I feel a strong pull to help other parents who are in a similar situation, but can't give up work to fight the fight, or who are exhausted from caring for their children without appropriate support.

I won't lie, I am not sure if I can pull this off to the extent that I wish, or how and what it will actually entail, it will be fluid as and when we get off the ground, being moulded by each case.  Basically, what I would like to do, is set up a charity specific to PDA, which is non-profit, that I can offer my time and my expertise as a warrior parent, to help families who are struggling to get their child's needs met, taking the burden off their shoulders, whilst working alongside them, case by case.  I have seen other, similar charities, but none that are specific to PDA, mostly special needs in general, or autism.

If we have the funds available, via donations, then I would be using them firstly to set up a website and social media accounts, then, as and when I get any cases, any funds can be used for professional reports, whether that's for a diagnosis, an expert in fields like social work, education, SALT, mental health, OT, psychologist, LD nurse etc. etc. 

The only problem that I have with setting up this charity/business is funds, so I am hoping to get the ball rolling by setting up this crowdfund.  A website will cost £600, I have already registered the name 'The PDA Clinic', so £600 is my target, for now, but of course any more, will be fantastic.

The name The PDA Clinic, I thought was a very good one, as we will be looking at PDAers holistically, and each case will be different, so it can come under the umbrella of clinic.

I am also, studying for a BSc in Health Science, with The Open University, with a view to doing a masters after that.  Again, this path is flexible, so can change, but at the moment I have a pull towards clinical psychology.

I would like to thank you for taking the time to read this, and kindly ask if you can donate to get this up and running.  Any donation, however small will help enormously.

Thank you very much in anticipation.

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