- Rewards 149
When I embarked on the EHCP journey with my daughter in 2009, another parent found me in the playground and told me I needed to know everything she had been through. She was right. Now, thanks to SSK, accessing the support to which your children are legally entitled is no longer about 'who you know'. I became a trustee because I want to help SSK bring this knowledge to everyone who needs it.
Questions they have asked
My friend is planning to move to Hertfordshire with her 15 year old son who has complex needs. She has identified an appropriate college for him but ...
... is hesitating because that college is telling her that she won't get funding from Hertfordshire beyond the age of 19. They referred her to this web page to explain the local authority's policy on funding for children with EHCPs. As far as I can see there is nothing on the website suggesting that he won't be eligible for funding, and in any case surely he is legally entitled to funding until the age of 25 no matter where he lives? https://www.hertfordshire.gov.uk/microsites/local-offer/preparing-for-adulthood/further-education.aspx
I met someone in the doctor's surgery this morning who has a non-verbal 4 year old who has just started primary school. The school is unlikely to be ...
... able to support her daughter for much longer as she also has severe - but undiagnosed - ADHD. Lambeth referred her to the Mary Sheridan Centre for a diagnosis but they are expecting she will be waiting at least a year for an assessment. She has been asking for help via the GP for several years. If she gets a private diagnosis will this expedite the EHCP or will she waste her money?
Someone in my community has a child in reception with complex social issues and potentially ASD. She is classified as non-verbal although she does ...
... have some verbal communication now. Her school have been clear since September that they can't support her. Her mother has applied to 14 specialist schools, none of which are prepared to accept her unless she has some intervention which results in her presenting differently. She has a meeting with Lambeth on the 30th January to try and resolve things but understandably has low confidence in a successful outcome. She has been told that she can bring an expert with her to the meeting, who could she ask who would understand the process well enough and doesn't need to be paid? Are there charities who could offer support in this way?
What is the best evidence to support a residential placement for further education (19-25?)
My daughter is 18 and would like to go to university, but this is out of reach as her learning disabilities prevent her from achieving GCSEs let alone A-levels. She is very frustrated and unhappy about being left behind by her peers/ siblings and this causes daily friction at home as she feels - in her own words - 'isolated'. She is very independent in some ways, e.g. having received intensive travel training she navigates London transport easily. However, she is emotionally extremely vulnerable, quite lonely and easily manipulated by anyone who offers friendship. We have already had to step in on two occasions with interventions from CAMHS and her school to prevent this, and can see the seriousness of these incidents escalating as she matures. We are concerned about her safety, her mental health and her ability to progress in education and independence.
We would like her to attend a residential college so that:
- she can make friends who are on her level, whilst learning to distinguish between genuine friendship and exploitation in a safe environment
- she is expected to work full time on practical, vocational skills with the appropriate level of support, repetition and consistency to become truly employable
- she can learn to manage her own finances, laundry, shopping, cooking through a waking day curriculum
We see this as an important stepping stone towards independent living, as she can master new skills but only with intensive training and support.
The local offer would be a part time course within a large mainstream college and she would not be safe there, especially when so much of her week would be unaccounted for while the family is at work and school. There are specialist colleges nearby which would be safer, but only for the 3 days a week that they offer, leaving her at a loose end the rest of the time. In addition, the curriculum at these colleges is very similar to her post-16 'employability' course at her current school, so she wouldn't be progressing much or learning how to work full-time in a practical job, unlike the residential colleges which have indicated that they could meet her needs.
I have asked CAMHS if they can write a letter to support our argument that a residential placement is necessary but they are reluctant to do so, despite having documented one intervention earlier this year which specifically references her 'friend' persuading her to steal on her behalf. Here is what they said: "I have been advised that we have to leave the Local Authority to make the decision without any input from CAMHS. They have explained that they are responsible for the plans, and we only confuse things by getting involved"
Surely we need input from experts close to her, and CAMHS are our only port of call here? My only other entry point is a social care referral and I have made a request but it seems to have gone into a black hole with the local authority.
How does DWP decide whether a young adult qualifies for a Personal Independence Payment? (PIP)
My daughter is 18 and has no mobility issues but cognitively she functions like a much younger child. DWP have turned down her application for PIP because there is 'no evidence of cognitive impairment', despite the fact that she has attended a special school for children with communication difficulties since she was 7, and will continue into specialist further education.
DWP interviewed her and she talked very proudly about her achievements, such as travelling to school independently and flying to Portugal to visit a friend on her own. Of course she doesn't want to/ didn't think to emphasise that she flew in the care of the airlines' special assistance team, whilst her ability to navigate TFL to get to school is the result of rigorous travel training through the local authority. DWP are using this exchange as evidence that she doesn't need help.
She clearly has a learning disability, however the only formal diagnosis she has ever had is for ADHD more than 10 years ago. Her medical notes throughout childhood refer to global developmental delay but I don't think that counts as a diagnosis. Is she entitled to these benefits? Or is this really for physically disabled people? Most of her school-friends qualify, should I get her assessed in order to prove that she needs support?
Questions they have answered
Can you remember who first suggested you needed a Needs Assessment? Who where they? Why did they make this suggestion?
Have you been through the EHCP process? What advice would you share with families who have a newly diagnosed child?
Are there key transition moments when taking legal advice is advisable, during the process of getting or maintaining an EHCP?