THE mother of a disabled child believes that society sees her daughter as ‘a problem’ after she was denied access to important support.
Hana Young, 28 from Gosport, says she has faced a number of difficulties in getting support for her five-year-old daughter, Tilly, after she was diagnosed with GAMT deficiency earlier this year.
GAMT deficiency is an illness that affects the development of both Tilly’s nervous system and her muscles.
Hana says that she has been locked in a ‘constant battle’ with Hampshire County Council to get Tilly the support she needs – but in the meantime, the Gosport mum has to to care for her full-time.
She explained: ‘She has been assessed for respite care before, but it was decided that I didn’t need any extra help.
‘In her current state, Tilly still needs to be mothered like a baby, but there isn’t any support available for her.
‘It’s really bad and you can see why parents end up on a downward spiral without the necessary support.’
On top of not receiving respite care, Tilly’s physiotherapy has been cut and Hana says she is in dire need of an occupational therapist.
She said: ‘Disabled children are entitled to respite care and that support just isn’t being provided.
‘My mental health is fine, but I am absolutely exhausted – and I hate that I am raising my daughter in a place that sees her as a problem and not as a useful member of society.
‘Tilly deserves so much more than what she gets at the moment. Things like changing places have opened my eyes to how many problems she will have to endure in her life.’
Hana is now pleading for Hampshire County Council to take another look at her situation.
She said: ‘It would mean so much to have just a little bit more support, because it has all been a constant battle so far.
‘All Tilly needs is a bit of help and understanding – almost all of the help we’ve had has come from other parents.’
Councillor Keith Mans, executive lead member for children’s services at Hampshire County Council, says that Hana and Tilly’s situation will be re-evaluated to see what can be done for them.
He said: ‘I am sorry to hear of the family’s frustration.
‘While I am not able to comment on the detail of individual cases, I can confirm that we are in touch with the family and that, as a result of a new approach being introduced in Hampshire, a new assessment is to be undertaken to look at their needs and what support might be made available.’