Tuesday, 23 November 2010
I recently read yet another misleading & facile 'beating autism' story in the national press. This time it was about a boy with autism who learned to show love to his mum after getting a cat. The article stopped short of saying he'd been 'cured' but the implication is that by finding a simple key you can 'unlock' someone's autism. If only! I don't want to deny parents hope but unrealistic expections can lead to fruitless & soul-destroying searches for non-existent cures or treatments, & add fuel to the autism industry. (See my previous post about the autism industry.) There is evidence-based help & support out there. Parents should not feel guilty if they can't achieve the happy-ever-after result implied by these fairy stories.
Friday, 5 November 2010
For the last three years I have been fighting to get my 26-year old daughter, who has a rare chromosome abnormality & autism, the expert help and support she needs. Residential homes have said they can't manage her behaviours, expert support services have shunned responsibility and she has been pushed from one local authority to another throughout the south of England. Three times in the last year alone I have taken out litigation to try to resolve the situation. Her PCT have said that she needs a fully staffed local supported living single person service – acknowledging that residential services can't provide what she needs. But who will pay? My daughter's funding has been a wrangle between two local authorities – one arguing that her predominant need was social care provision, the other arguing that her predominant need was for health care and, in addition, they couldn't agree which area’s authority was responsible. In January this year, after litigation, one authority was forced to accept 100% responsibility for funding her health care so she could get the hospital treatment she desperately needed. This funding agreement was given 'without prejudice' & the dispute continues. We have been waiting for over 18 months for a continuing care assessment to be completed - it should take about two weeks. These delays and disputes are a means for responsible authorities to delay or avoid paying for care. It means that our daughter has not had any involvement from a care manager for the past few months as the authorities continue to shunt responsibility betweeen them - I have done their job for them. She has suffered so much and we are fearful of the future - what happens when she leaves hospital? Our much-loved, complex & vulnerable daughter has become invisible in the midst of all the funding wrangles. We can only hope that she will regain her quality of life at the end of all this - but what happens to the vulnerable that don't have families to speak for them?