Gemma Owen – Anna’s guest on All Things Autism Radio show

Gemma Owen – Anna’s guest on All Things Autism Radio show

I am Gemma and age 36 I have been married to Tim for 15 years and have 5 children, 3 who have a diagnosed on the autistic spectrum and ADHD. I also have a diagnosis of autistic spectrum disorder which I didn’t have the diagnosis till the age of 27, and didn’t open up till recently. I was asked by Anna to join her on her radio show on the 27th May.

My anxieties were all over the place, and my head felt like i had a thousand of things going through it, I met Anna and we went through things she always has a way of making you feel calm, when we arrived at the studio we were welcomed by a lovely lady who was going to produce the show.

The show went really quick, I wanted to say a lot more in my interview but my anxieties got the best of me. Anna was amazing and could see I was struggling and took control. I opened up about my diagnosis only a few weeks ago, and only a selected few knew.

I struggled growing up trying to cope with the different hurdles and not really knowing why my body was feeling the way it was, would have meltdowns and when I came around would feel exhausted and weak. I would run away from school as I couldn’t cope with the confined space in the class room and the noise of people talking, noises, sound of the chairs moving across the floor, the work on the white board writing while the teacher was talking, my brain wanted to explode.

I struggled with my teenage years I self harmed and took a number of overdoses, at the time I was numb hated myself and felt I was making my family’s life miserable.

I had a lot of hospital stays and counselling while I was there. My early adult years was a big learning curve I met Tim at the age of 17, I struggled with our relationship, and times I would push away or shut down which could last from a day to weeks Tim always stuck by me. Mother hood was has been a roller coaster of emotions, not sleeping, not eating or wanting to keep eating, crying, not hitting there mile stones. I was upset angry and deflated with myself when my 3 were diagnosed Tim also struggled to accept, but also felt relieved to try and get the support.

Everyday is always a challenge and a learning curve from fighting for the education, coping with day to day life, puberty and coping with body changing, relationships, taking medication. I worry a lot about my children especially the older 3 when I am gone it scares me so much with how the world is and know they won’t be able to defend or speak out for themselves.

Sophia sent a video audition to Anna Kennedy Online, they were looking to give a child a scholarship at pineapple performing arts, Tim had a email a few months later to say Sophia had been chosen, we were so excited and Sophia little face lit up and she danced, jump and sang around the room. It has been a life changing experience for Sophia she loves her Sundays at pineapple, she is just in her comfort zone because she is doing what she loves and everyone has excepted her and doesn’t batter an eyelid she loves performing at her end of term shows.

We have both made wonderful friends and now life long. Autism’s Got talent, I didn’t know what to expect when I watched the first show last year. All I can say was WOW I was blown away by all the acts, I have never cried so much with happiness the courage and determination to even get up on stage and with the lights and sounds to add incredible.

Watching are scholarship winners blew me away and again this year the bond they have just makes me forget at that moment in time how the world is to see them enjoying and feeling happy and being accepted for who they are.

Thank you again Anna for inviting me.

If you missed Gemma’s interview it is available to listen to everyday at 1pm until Monday at www.womensradiostation.com

SEND Crisis March 2019

SEND Crisis March 2019

Parents gather across the country to protest against funding cuts in schools

It was really powerful to see so many families and supporters campaigning against special needs funding cuts in parliament square today.

Parents spend endless hours attending endless meetings, stress and for many people family break down.Parents trying to do the right thing for their children are often dismissed and seen as pushy and being unreasonable.

When things were really bad hostile and uncooperative it is common for that LA blame parents for the difficulties a child was having at school rather than acknowledging its the result of an unmet need. 

After my sons were at home for a couple of years receiving only 5 hours home tuition per week and I only received 3 hours respite a week.

I became so tired and frustrated with the system in place.

I was hungry for information and was reading many books and articles on how early intervention is crucial for our children.

I could wait no longer so my husband and I and many other frustrated parents set up a school which is now 20 years old in September.

Have things got better ? Well I probably would not be standing in Parliament Square today if they had supporting the SEND National Crisis March.

I recently read an article in the media that no fewer than 78% of permanent exclusions are issued to those with SEND with 4000 special needs students being excluded every week.

Our children deserve better!

This whole SEND system has been changed so many times throughout the years and in my opinion making it more and more difficult for parents to navigate and climb over hurdles and learn the SEN language.

Many parents trusted the LAs and many have now learned not to believe everything their Local Education Authority says. Reports sometimes written in such a way that they not worth the paper they are written on. Something my husband calls Woolly Word Bingo.

Parents spend endless hours attending endless meetings, stress and for many people family break down. Parents trying to do the right thing for their children are often dismissed and seen as pushy and being unreasonable.

When things were really bad hostile and uncooperative it is common for that LA blame parents for the difficulties a child was having at school rather than acknowledging its the result of an unmet need. 

Developments

So that was 20 years ago, what has happened to make things better for children and young people who need essential support? 20 years is a long time, in fact you could fight World War 1 five times during this period.

  • Statements of special educational needs have been replaced by Education. Health and Care plans. This is an attempt to collate educational, health and social care needs in one place and match these with the provision required to meet these needs.
  • The rights allowing educational inclusion have been strengthened.
  • Disability legislation, particularly the Equality Act 2010 have, in theory at least, strengthened the protections available to individuals with a disability.

All in all, these developments are positive.

But what is it like now ?

I would like to say that things are much better now than they used to be, but I can’t.As a charity these are the problems we hear about on a weekly basis:

  • We still hear from schools who tell us that they are starved of the funding needed to effectively teach children with special educational needs
  • Children and young people being excluded rather than having their needs met.
  • Lengthy waits to obtain a diagnosis on average 5 years!
  • Lack of post 16 provision

The list goes on and on…Parents still getting bogged down in SEN bureaucracy

What is to be done?

  • The problems are many, but the solution in my opinion are relatively simple.
  • The Government needs to recognise that to make the legislation work, they need to provide the right level of funding.
  • At local level there needs to be more independent oversight to proven service failure. This means making local authorities genuinely accountable for failure.

THIS HAS GOT TO HAPPEN !!!
The last thing I want is to be here again in 20 years !

SEND National Crisis March, 30 May 2019

SEND National Crisis March, 30 May 2019

Disabled children, families and supporters to march at 28 locations across England and Wales

Parent-led ‘SEND NATIONAL CRISIS’ to deliver 13,000-strong petition to Downing Street

Campaign to raise awareness of the national crisis in education for disabled children and young people

Thousands of parents, disabled children and young people, and professionals who work with them will be taking to the streets on Thursday 30 May 2019 under the ‘SEND National Crisis’ banner, to demand that the Government acts to end the national crisis in Special Educational Needs and Disabilities (SEND) funding and delivery.

SEND National Crisis will deliver a petition with over 12,000 signatures to the Prime Minister at 10 Downing Street at 12pm on 30th May. This will be followed by a rally in nearby Parliament Square from 1-3pm.

Campaigners will also be demonstrating at 26 other locations across England and Wales in the first national action of its kind. The National Education Union is supporting the protest and is calling for its members to join demonstrations in their local areas. Other supporters include The National Deaf Children’s Society, The Disabled Children’s Partnership and Simpson Millar Solicitors.

In 2014, a new law, the Children and Families Act (CFA), gave children with SEND the right to what was intended to be a holistic Educational, Health and Care Plan (EHCP) from birth up to the age of 25. However, since 2010, spending on high needs in Education has failed to keep pace with demand.

In addition, cuts to school and college funding have led to vital teaching assistant support being cut, while many Children’s Centres, which provide essential support for disadvantaged and disabled children, are also being closed, again through a lack of funding. As a result, more disabled children are out of school, or being illegally excluded or off-rolled, and more families are having to fight to get the right provision, something the SEND reforms were intended to end.

Hard-pressed parents, already coping with children who have complex needs, and often with low incomes because of caring duties, want to highlight the damage being caused to disabled children. Their access to appropriate—or sometimes any—education, social care, or health
provision is being curtailed by councils and health bodies cutting key services and failing to comply with their legal obligations.

Nadia Turki (co-founder of SEND National Crisis) shared:

“We can no longer remain silent when our children are suffering for want of adequate Government funding. We are demanding a necessary change to the framework to ensure workable regulatory controls, and to ensure SEND funding is ring-fenced to ensure delivery precisely where it is most needed.”

Poppy Rose (co-founder of SEND National Crisis) shared:

“The Government said austerity was over, but families say the lack of funding for support is having a detrimental effect on the mental health, life chances, and outcomes of disabled children and young people.

While the reforms extended statutory support to age 25, young people have consistently found it impossible to secure suitable education or training. It is an intolerable situation that means access to rights, equality, inclusion and the prospect of a bright future are being wrongfully denied to many thousands of disabled children. This is not just a national crisis; it is a national scandal.”

Key statistics:

  • Funding is in crisis: the funding gap for high-needs SEND was at least £287m last year and is projected to reach £1.6bn in the next 2 years
    [Source: ISOS Partnership “Have we reached a ‘tipping point’? Trends in spending for children and young people with SEND
    in England”, December 2018]
  • The SEND Reforms are in crisis: so far, half of all local area SEND services have failed their Ofsted / CQC inspection
    [Source: Ofsted website, 17th May 2019]
  • Local authority decision-making is in crisis: parental appeals to the Special Educational Needs & Disability Tribunal (SENDIST) have increased by 80% since the SEND reforms began and parents win nine in ten SENDIST appeals that reach a hearing.
    [Source:HMCTS Tribunal Statistics Quarterly]
  • Complaints to the Local Government & Social Care Ombudsman about SEND have risen by 150% since 2015. The LGO upholds 87% of these complaints – the highest of any category they investigate.
    [Source: LGO evidence to the Education Select Committee SEND Inquiry, April 2019]
  • Children and young people with SEND are in crisis: pupils with SEND are six times more likely to be excluded from English state schools than pupils without SEND. Just 6% of people with learning disabilities are in paid employment.
    [Sources: Department for Education, “Permanent and fixed-period exclusions in England”; IPPR North “Plans that work: Employment outcomes for people with learning disabilities”, April 2019]

Contact details:
Contact: sendcrisis_media@mail.com
Twitter: @SENDCrisis Facebook: @SENDNationalCrisis
Hashtags: #SENDNationalCrisis #OurKidsMatter #SENDamessage

SEND National Crisis UK march locations:

  • London: Downing Street (petition)
  • Parliament Square; Hackney Town Hall
  • Waltham Forest Town Hall
  • Berkshire: Forbury Gardens
  • Reading
  • Hertfordshire: Fairlands Valley Showground
  • Broadhall Way, Stevenage
  • Derbyshire: Hall Leys Park, Crown Square Matlock
  • Derby: Derby City, Council House
  • Buckinghamshire: The Exchange, Aylesbury
  • Surrey: Guildford 
  • Warwickshire & West Midlands: Leamington Spa
  • Sussex: The Level, Lewis Road, Brighton & Hove
  • Liverpool: The Bombed Out Church
  • Cumbria: Barrow-in-Furness, Railway Station

 

  • Birmingham & Walsall: Victoria Square, Birmingham
  • Isle of Wight/Hampshire: St Thomas Square, Newport
  • Dorset: Town Pump, Dorchester
  • Suffolk: Cornhill, Ipswich
  • Worcestershire & Herefordshire: Guildhall, High Street, Worcester
  • Yorkshire & Humber: Outside Leeds Art Gallery
  • Norfolk: Chapelfield Gardens
  • Essex: Castle Park, Colchester
  • Cambridgeshire: City centre, Peterborough
  • South Gloucestershire & Bristol: College Green, Bristol
  • North Wales: High Street, Rhyl
  • Halton: Victoria Park, Widnes
  • Hull & East Riding: Queen Victoria Square, Hull
  • West Sussex: Worthing
  • Manchester: Outside Central Library
The LGO criticises LB Hackney for significant delays

The LGO criticises LB Hackney for significant delays

The Local Government and Social Care Ombudsman criticises LB Hackney for significant delays when completing plans for children with Special Educational Needs.

Reg 13(2) The Special Educational Needs and Disability Regulations 2014 requires that a local authority must send the finalised EHC plan to:-

(a) the child’s parent or to the young person;

(b) the governing body, proprietor or principal of any school, other institution or provider of relevant early years education named in the EHC plan; and

(c) to the responsible commissioning body,

as soon as practicable, and in any event within 20 weeks of the local authority receiving a request for an EHC needs assessment.

 When the EHC plan is issued, disagreements can be resolved by mediation or by the First-tier Tribunal (Special Educational Needs and Disability) standing in the place of the local authority.

The Ombudsman looked into two cases and found that in one case a boy with autism only received his plan after 69 weeks. In the second case, there was a 48-week delay in providing a plan for a young boy with Down’s syndrome.In both cases the boys’ families were found to have made significant efforts to ensure the council provided the services they were entitled to.

The Ombudsman made a number of specific (including financial compensation) recommendations in relation to the families concerned and also general recommendations designed to improve the relevant processes within the LB Hackney.

In our experience, while many local authorities adhere to the said timescales, this is not always the case. This case is a reminder that, when unnecessary delays are experienced in issuing an EHC plan, parents and young people should consider invoking the local authority’s official complaints procedure. 

Full details of the Ombudsman’s findings  can be found click here

Matthew Bennett on Sky TV – The Chrissy B Show

Matthew Bennett on Sky TV – The Chrissy B Show

My name is Matthew Bennett, I was diagnosed with Asperger’s Syndrome when I was 36. I am now 40 years old.

My problems started as a teenager when my mind became overwhelmed with the world. I started self harming to cope with all the sensory input and I discovered alcohol not long after. Alcohol quickly became my safety blanket and I began drinking to deal with any situation. It softened everything and made life bearable but it also nearly killed me. I was in rehab by the age of 21. 

I spent a year and a half there learning to exist without alcohol, but once I left there came many more issues. Sobriety hurt, so I was constantly looking for something to take the edge off. Everyday was exhausting.

My one real outlet was my music and writing. When I was 30 I decided to attend university to study Creative Writing and Screenwriting.

I love to learn and my brain is wired to see patterns in things so learning about storytelling was perfect for me but I struggled to make friends and I always felt like I was ‘outside’ the normal social groups.

Rumours were eventually spread about me and I didn’t help the situation by being honest about myself and my past addictions.Things soon got on top of me and I ended up suffering a break down.

I took a year out to recover and recharge and when I returned I ended up graduating with a First Class Honours Degree. 

I received my diagnosis of Asperger’s Syndrome just as I was finishing university. Learning that you’ve been experiencing the world differently to everyone else your entire life is a difficult thing to come to terms with.

I struggle to process things at the best of times but this was beyond anything I’d ever experienced before. I was angry, I was in denial, I was sad, I felt like I was going through the stages of grief.

It took me a long, long time but I finally came to terms with who I am and why I am the way I am. I’ve led a very painful and troubling life but I wouldn’t change any of it because I’ve learned so much about myself and I now like the person that I am.

I don’t think there are many people who can truly say that.

I now spend my time working with my son Callum Gage Bennett under the stage name FMA + 12 Gage.Callum’s mind is very similar to mine and he is incredibly skilled with words.

When he was younger, he had an abusive step father who would bully him and he used to be a nervous wreck and he suffered from a stutter.

When Callum was 15 we wrote some songs for fun and performed them at a gig with the aims of helping Callum’s confidence, the gig went better than we could have ever imagined and things snowballed from there. Callum no longer stutters, he will be 21 in August.

Callum has Dyslexia and it is likely that he too is on the autistic spectrum but he has chosen not to pursue a diagnosis.Since playing that first gig together we’ve gone on to play many many more gigs and shows as well as – Releasing our debut album ‘Parental Advisory’. Being short listed to appear on Britain’s Got Talent.

Winning an award for being inspirational and being the first rap act to appear on BBC Northwest Tonight. 

But one of the greatest highlights was performing at Autism’s Got Talent in 2017. Before playing this show I didn’t really know any other autistic people and I definitely didn’t know what the experience would be like.

I was worried that it would be a stressful couple of days in an unfamiliar and unwelcoming place but these thoughts couldn’t have been further from the truth.Autism’s Got Talent isn’t just a showcase of talented people, it’s a safe environment for people like me.

We met singers, dancers, magicians and impressionists of all age ranges and it was an honour sharing a stage with so many amazing performers.

Each and every one of the staff were so patient and incredible too. By the end of our stay in London we had met so many awesome people and gained some true friends.

I can easily say that everyone should attend this incredible show and if you are autistic and you have a special talent, skill or hobby that you want to share then you should definitely let Anna Kennedy know.

I’ve felt alone my entire life, but it was at Autism’s Got Talent that I first felt that I belonged. I will always be thankful to Anna for that.

Matthew Bennett

Twitter – @M_JohnBennett

www.matthewjohnbennett.com

www.fma12gage.bandcamp.com

www.facebook.com/FMA12Gage/

The interview will be aired on Monday June 3rd at 10pm Sky TV 191

Month: May 2019