Susan reached out for help and guidance for her son
“I contacted SEN-FSG reaching a stalemate with my SEND team regarding Sections B, F and I, of my son's draft Education, Health and Care plan.
My gut feeling was that the local authority’s preferred school would not meet my sons special educational needs. I meet with a local an independent supporter from the charity three times who advised that the local authority objection to my preferred school (that the school was full) was ‘reasonable’. SEN-FSG however guided me to the relevant case law and gave me confidence to draft my tribunal application.
I issued a claim to tribunal, and within three weeks a place at my preferred school had been found!
Taking on your local authority can be really intimidating. I nearly gave in and let my son go to a school which would have been completely unsuitable for him. I’m so glad I persevered and spoke to SEN-FSG ”
Martin and Freya's Story
Section F of the EHC plan stated that Freya must receive occupational therapy (OT) sessions as part of her special educational provision. However, as there was no local OT provider, the nearest sessions Martin and Freya could attend were a 1.5 hour bus trip away. This journey was exhausting, and it meant that Freya was not getting the full benefit from these essential sessions due to being so tired when she arrived. She also had to take a whole day off school to attend, and Martin could not go to work as he needed to accompany is daughter .
During the annual review of the EHC plan, Martin asked the local authority (LA) to fund the transport or to give her a personal budget, and reminded them of their duty to ensure the provision in the plan is made. It was at this point Martin called our helpline for advice on whether he should receive funded transport for Freya to attend the OT sessions.
Help from SEN-FSG
Martin spoke with one of our Advice Line volunteers who explained that although she was not entitled to transport (despite the provision being specified in the EHC plan), the LA could choose to exercise its discretion to arrange suitable transportation. If they refused to do so, the LA would be unable to fulfil their legal obligation to provide occupational therapy, as there were no other local OT providers.
Martin went back to the LA armed with our guidance and within two weeks the LA had agreed to fund the transport costs.
Marin told us, “Speaking with Lee on the Advice Line gave me the confidence to keep going and go back to the LA. I was determined not to be fobbed off. I felt empowered, revitalised and determined that I now had the knowledge to write the email I needed to write.
Having the transport funded has been life changing for Freya." Martin explained, “The OT provision in Freya’s EHC plan was the most important part. Although I was aware Freya struggled with sensory overload, I had no knowledge of interception or proprioception. The OT Freya has received has given us a huge insight into the areas she struggles with and why. We had noticed Freya had certain ways she liked to do things but not fully understood the reasons behind her preferences. To be able to understand what is going on for Freya has enabled us to make her daily life easier and better advocate for her. We have also been able to learn how to help Freya self-regulate which has had a huge impact on her and us as a family”.
Martin continued, “The access to transport for these sessions has ensured she gets the most from the therapy. Freya’s confidence to try new things has grown dramatically and this confidence has spilled over into other areas of Freya’s life. She was so used to not being able to try new things she just stopped. She arrives fresh for each session, does not have to miss a day of school and I can also go to work."
Benjamin's search for help
I am a single parent of twin boys one with cerebral palsy and the other brain damaged at birth, he has a short life expectancy.
My wife passed away from cancer when our boys were four years old, she was diagnosed in April and died in July. Saying I wasn't prepared does not cover the despair. I hid my head in the sand and didn't respond to correspondence, We also withdrew from family and friends. “I just didn't understand, We wanted my wife back I was very angry. WHY US?
I had stopped working to care for our children, they both need 24 hours individual nursing care .
We soon lost our home as I could not keep up with the mortgage payments, debt was growing all around us, and I became very depressed and often thought about suicide. The only thing that stopped me was our boys needed me and me only.
Every hour became a struggle, and the small things were multiplied as they had become of an age to notice that we didn't have things that every other child had, they were bored of our daily routine to walking around the local park doing nothing much and going nowhere.
Their clothing and shoes were two small by now we had no money to replace them , We was embarrassed by the looks from strangers with children dressed appropriately for the time of year .
We know we don't have long with David, our poor living conditions in a caravan were contributing to all our health conditions, constantly having chest infections, tonsillitis and scabies.
We had to move 70 miles to the only place I could find with the very limited income I had left. We were unknown to statutory services and other people.
No one asked questions and then we became invisible.
I was frightened the children would be taken into care if people knew the reality of our families’ circumstances. I became obsessed with the thought of hiding away, this in my mind would guarantee the family stayed together until God will collect my son to be with his mother, happy once more.
You may ask yourself how a normal family becomes destitute? The answer to your question is far too easily you become trapped in a spiral of circumstances that you have no control over.
Five years ago, we had a comfortable home, two holidays a year, friends and family were all around us just an average family unit. Children went to separate special needs schools. Were they attended swimming lessons and also computer clubs.
I worked as a tram driver, my wife * Peggy worked part time at Tesco. we juggled the care of our boys together happily.
I had become blinded to our negative and dangerous reality. In the winter of 2022, “ it was just an average day walking through the local park” one son in a wheelchair and the other using his walking frame.
It was unusual day there was some kind of activities going on I would usually walk the other way to avoid contact with people partly through shame and partly because I had forgotten how to interact with people.
As fate would have it a group of children came over and invited the boys to the party in the park there was bouncy castles - face painting - performing arts - jugglers - craft tables - and a picnic, everything was free. I didn't notice at first it was an event organised was by the Special Educational Needs Family Support Group it was just like a fun interactive welcoming party.
Looking around there was also manned information stands with no pressure to talk to people - as far as I can remember it included - benefits advice - housing options - social services - crossroads - Job centre plus - Also there were Citizens Advice Bureau - and political counsellors and MPs. radio station - counselling services – interpreter's - health visitor - tables with free clothing and shoes. Foods in bags, fruit and toys with a sign saying please help yourself.
Members of the charity we're wearing bright t shirts with their name and logo on.
Everybody had a smile on their face there, children and adults just like mine from different backgrounds and ethnicities.
We are an Asian family and for the first time in years we felt that we belonged. (It was like everything we needed was on this playing field
( God had it brought us together).
After two hours I had the confidence to approach Andrew with my children the playing happily with volunteers from the charity in my eye sight
It truly felt like a dam breaking in my chest , I couldn't talk fast enough. I found myself pleading for help it was very strange and totally unexpected experience.
Andrew did not judge me or show me pity if he had it done, I'd would have walked away with my children.
Everything I told him no matter how embarrassing or shameful didn't alarm him, we discussed options and something we have not had for a very long time “choices “.
There was no rush or pressure, we arranged to meet the following day
The night before the meeting I was planning how to mask the situation we've been living in.
I was going to cancel by just not turning up somehow being able to meet in the park was less threatening to us than a formal building. When you’re in my circumstances you value the opportunity to make informed decisions without being railroaded or being told you are a failure and damaging your children.
I knew this could be the wring thing to do however it didn't stop me coming up with multiple reasons why I should not go to the meeting .
I extremely guarded at first and gave false names and telephone number. The five hours went by so fast Andrew had arranged for my children to be kept busy with two special needs volunteers ,we were also gave us food and drink.
It was a start of a new beginning the old saying is true, It’s what you know and who you know that can overturn all the negative problems you have.
We left Andrew with the food hamper containing fresh fruit , drinks and appropriate special needs activity packs for the children.
Information leaflets and booklets in my first language. I was better informed through the correspondence that had been given to me I had ask for help and interventions.
I stop feeling ashamed together we formed a family action plan prioritising our most urgent needs and that of my children.
Within four days my children had appointments at Manchester children’s hospital with transport that was provided by the charity also given £100 food voucher and essential items of toiletries.
Andrew with his colleague Marie came to our caravan to carry out an assessment of need. Marie made several phone calls and by that evening, we were given temporary accommodation in a two-bedroom bungalow that was connected to all utilities and furnished.
There was food in the cupboard's, toys and games for the children even a television, my mobile phone was topped up with £30 pounds.
On the 2nd week the children were back in full time education with new uniforms and shoes, and free school meals also placements in the after school club these were also provided.
The special educational needs department also arranged transport to get to from school.
Phillip is one of the SEN-FSG charities many volunteers who sat with me and helped me to apply for a range of benefits we were entitled too. I just didn't know that they even existed with no computer or internet access many of the services that are supposed to be available to family in needs are Not accessible if you cannot use IT – If you cannot read and you don’t have computers connected to the Internet .
Eventually social housing gave us a permanent tenancy in a adapted bungalow, it been furnished from local charities shops that work with the SEN-FSG. There is a garden and patio door so my sons can enjoy the fresh air.
I am now back in part time employment and offer my time as a volunteer on the telephone helpline for the charity.
Counselling is being provided to help us all overcome the death of my children’s mother and my life partner preparing for the time when my son will pass away.
There has been an improvement in all our physical and mental health.
Special education needs families support group is a non-stop support network they providing multiple services when families like ours need them the most.
Where do young people go with learning disabilities for help when you have lots of problems and cannot communicate using the magic words to open dialogue with many organisations.
Often my mind was niggling inside my head for any help after being a care leaver age 17.
I was given temporary accommodation for six months by my ex-social worker who arranged this and gave me £200 as well.
No one prepared me for living in independently.
I was just glad to be free of the chains of being known as a problem child.
From this date all doors become firmly closed. I was scared and alone when the reality became real.
Stories were told to me from other vulnerable young people in care about being unsafe and preyed upon from older wiser adults, of course we all thought they were only stories, and I wouldn't become one of them at 17.
I was a typical teenager with ambitions. When you are in children home everything is done for you except giving you the time to teach us about surviving or caring for ourselves.
With no social worker family or friends, I was in a very rough area everybody seemed to be on drugs and did not work.
Crime was all around me including the building that my small bedsit was in.
My room was broken into every time I left the building. I didn't have very much, some food, bedding and a small battery radio that kept me company.
Whatever I had was taken and I couldn't say anything as I would be beaten up like other young people had been.
I didn't know how to end the growing suffering every single day, except for Sundays when I travelled on bus (with no ticket) until I was thrown off or went to libraries on Mondays to keep warm.
I needed help urgently help to live independently and to keep safe like other young adults I simply had no idea were to or where to start.
Letters received where too complicated to understand and I had no money left after 6 weeks totally unprepared for the new world that I had been discharged into.
One Sunday I came across “a drop-in service at the SEN-FSG", “there I met with other young adults like me who were bewildered and confused”.
I was given food - clean clothes - a torch - warm blankets - information and guidance right away. When you are a care leaver you learn not to trust people as I never stay around long enough to form a relationship with anyone not even my parents and nobody else wanted me.
I didn't have any electricity or gas I didn't know how to arrange them could not see an end to the mounting problems.
Except by becoming a sex worker that was the only thing of any value I had left to use was my body. People in the flats I lived in told me how easy it was to make money, they also gave me names of people I could get drugs from and pay them back with my earnings.
Ken would collect the money and make all the arrangements, I just had to obey him.
He said I would be very popular as I looked so young there were lots and lots of people that would available right away to start work.
Things other young girls take for granted we're outside my reach lots of questions were going around my head making me very sad and unwell.
When should I start being one of kens girls?
What would I have to do I didn't even know how to?
How do you find General practitioner?
How can I apply for college placement, I didn't have access to the internet or a computer?
How do I find employment?
Where do I go to ask for safe accommodation?
What do I need to open a bank account?
I do not have identification and could not afford them ( passport - driving licence - or utility bills
What is budgeting skills?
Prepare meals with no stove, microwave?
How to wash my clothes with no hot water or Soap ?
How to get food with no money?
(These are some of the mounting questions going around and around in my head)
One day when I was in the library there was a lady giving out information from the special educational needs family support group , I was given a drink of tea and some biscuits it started with a gentle exchange of names we talked about the weather until I felt at ease breaking down in tears was so embarrassing for a long time nobody had listened to me .
I went back to the library the next day 10:00 o'clock where I was introduced to Anna for the SEN-FSG charity she became my personal advocate giving me the time to discuss each one of my problems, helping me to have a better knowledge and priority for each one of my problems I now had a voice that was being acknowledge “ is very strange for somebody like me to comprehend - trusting people was definitely not my mindset most people wanted things from me or did things to me . Why was a stranger interested in helping me I had nothing to give her back ?
Anna negotiated with different organisations and services teaching me how to communicate as an adult taking control of my life for the first time.
I have now moved and didn't become one of * Kens girls.
Anna saved my life and help me to understand the dangers I would be in.
She also showed me that I had real choices and options, with a friend by my side I felt wanted and prepared for a better future.
I meet with Anna three times a week and can contact her anytime no questions are too big, no task too small.
I no longer feel overwhelmed and abandoned I have a stable future with the skills I need.
Things become difficult to overcome being lonely and having no voice is very painful whatever your age.