|Posted by Michael Mcewan on January 26, 2021 at 6:05 PM|
It's so important no matter what your disability,or age, that we all have the right to an independent life.
This was well highlighted in recent BBC documentary called Katie Price- Harvey and me.
Katie's son Harvey was born in 2002, soon after he was diagnosed with Septo - Optic Dysplasia , a rare genetic disorder affecting his eyesight, he also has Autism and Prader Willi syndrome , causing a hormonal imbalance which causes weight gain, learning disabilities and behavioural problems.
On the documentary Harvey celebrates his 18th birthday, he requires 24 hour care ,unable to control of his weight ,his needs are complex, with limited social skills this is often very stressful for him.
His birthday marks another milestone, it's time for him to leave school and find a college best matched to his needs, anyone with a disability ,parent or carer would say this transition is not easy, that's no difference for Harvey and his mum.
The documentary was a good insight into their relationship , and shows Katie's strength and abilities as a single parent.
During a visit to the Orpheus Centre, a college in Surrey who provide therapy to disabled young adults through performance arts , unfortunately loud and unexpected noise, banging of a door, distressed Harvey and he threw his head repeatedly against a door. Harvey asked for no sudden noise , a rare clear request to prospective college guides, but as they couldn't do this both Harvey and Katie realised not the right fit.
When they went to visit National Star college in Cheltenham Harvey was distressed , worried he would have to stay overnight ,he refused to get out of the car and whimpered.
Their guide, a teacher called Alice ,showed him a social story with pictures of what he could expect from the hours ahead. Alice used a blend of clear questions and Makaton to Harvey, took them a full tour of the college,including sensory area, involved Harvey in some art and interactive work that was going on. Katie and Harvey found the right match, have applied to National Star and they'll find out in March if they have,hopefully, been successful.
The chief education officer tells Katie they will put in a funding application to the local authority, detail everything that would be provided for Harvey.
For example, in this college a part time day student may be £15,000 to £20,000 a year to meet their support needs,but a student in full time, all year round residence, with greater support could be up to £300,000 to £350,000 a year.
Local authority approval depends on Harvey needs, and where they feel is the best match for him. Katie must ensure his education health and care plan (EHCP) ,a legally binding document in England detailing the support he must receive, is up to date.
She must deal with Harvey education attainments , health problems and also the medication he requires , tasks he can work to complete whether he can cook for himself and clear up, dress , make the bed and personal hygiene. His social awareness is currently limited and Katie admits she has done everything for him. As with many disabled young people transitioning into adulthood, this is a daunting time for both them and their parents,while being overseen by local authority and can often not be a smooth transition.
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