ACT NOW attended All Party Parliamentary Group Meeting on 27th April

ACT NOW core group members Carol, Anna and Mavourneen attended the APPG meeting on 27th April. The meeting was packed for this joint meeting with other APPGs including the APPG for Autism, Disability, Learning Disability and Eye Health and Visual Impairment.

The first half of the meeting was chaired by Charlotte Leslie MP(Chair of the All Party Parliamentary Group for Autism) but she had to leave halfway through and was replaced by Robert Buckland MP who is Treasurer of the APPGA and who himself has a child with autism.

Iain Duncan Smith did not attend but Maria Miller MP (Minister for Disability) did and spoke about the Welfare Reforms. She confirmed the Government will not be removing mobility component from people in residential care, it will be incorporated in the PIP roll out. 

Maria Miller took some questions and there was a great depth of feeling throughout regarding the level of anxiety being experienced by people with disabilities over the welfare reforms. Several people were very vocal in their dissatisfaction and anxiety. However, Maria Miller only attended for approx 30 minutes as she had another meeting to attend.

At this point a representative from MENCAP addressed the room followed by our Campaign Manager Carole who started her address by informing the meeting that she has two sons with autism. She said that her eldest son has a diagnosis of AS, which is deemed to be the highest functioning form of autism, while the youngest has a diagnosis of autism, and yet it is her eldest son who faces the most significant stress and anxiety in his daily life.

Carole gave an account of how her eldest son struggles to communicate and the problems that he has had accessing the welfare system. She also spoke of the anxiety and stress that her son was experiencing just knowing he has to have a WCA and how this is impacting on his mental health. Carole said that adults with autism do not 'do' uncertainty. Knowing that he will have to face an assessment but not knowing when is placing her son under a huge amount of stress. Carole also pointed out that her son had been without services and provision from leaving Children's Services when he was 16. She said that for 8 years her son had seen no one and that when his DLA was reassessed 3 years ago their GP could find no one in the North East  willing to see her son. Carole asked who could they call on to provide supporting evidence for her son after his WCA. Robert Buckland was visibly moved by what Carole had to say and went on to say her speech had been very powerful indeed.

Margaret Curran MP, shadow minister for Department of Work and Pensions spoke about the inadequacies of the welfare reform and her resolve to oppose many of the changes.

During the question time Mavourneen spoke about the ATOS assessment descriptors on behalf of ACT NOW and regarding Jobcentre Plus staff recently striking over being given a maximum of 16 minutes to carry out their initial telephone interview preceding any further assessment or questionnaire. She spoke about her son (who is 19) and explained it had taken her 16 years to get her head around his autism, so how can someone with possibly no knowledge of autism judge whether an autistic adult is fit for work/further assessment in less than 16 minutes.

Anna spoke about her two sons and stated that no matter what her sons had required from being diagnosed with autism the state had never been able to supply any of it. Anna said that she has learnt that if her sons need something she has to build it up from scratch and supply it herself. She said that she had been told her two sons were the only two boys with autism where she lived and yet when she opened her first school parents were queueing up for places.

Anna said that as her children had grown she had met the challenge of meeting their needs and has now opened two schools, a college and a residential home and went on to share that she had 3 hours respite removed from her youngest son when she opened her first school and was told that she no longer required respite because he now had a school placement.  Anna told the meeting that as long as she was alive she would continue to fight to meet the needs of her sons and also to help families within the autism community to help their children and adults because she knew that unless we did this ourselves it was not going to get done.

After the meeting Anna and Carole were told that Robert Buckland was impressed with what they had brought to the meeting and would be asking for a meeting with the Minister, himself along with Anna and Carole.

There was no doubt by the end of this meeting the depth of feeling about proposed welfare reforms, migration to ESA and use of ATOS assessments. We hope some of what was shared in the meeting has a deep impact on the people who count.

ACT NOW (Autism Campaigners Together)