#emotions #Growth #learning #development #voiceoftheirown #theirrights #disabilityawarness
Hi what an amazing few days it has been for us, I am on a path to teach my kids what is achievable if they persevere and keep trying, to push the boundaries of there set routines and set out a new path of discovering just what they are capable of if they believe in themselves and have faith in where life is taking them. I am big on not hindering their growth while at the same time supporting their needs. I want to continue teaching them life skills while they are focusing on their education getting an Keeping a job when you do have complex needs is challenging I know this through my work with Hayley but having an education and the academics for them i hope will vastly improve their chances of eventually working and living a fully independent life. This is becoming more of an important topic to our family due to Niki transitioning to adulthood share is 21 in march. Jake will be 16 in February so milestone birthdays.
But Niki her biggest issue at the moment and I think it maybe an issue for many with EHCP’S that are staying on in further education is the Financial support which is through the universal Credit. Not classed as a child any longer once they reach 20 and not classed as an adult in their own right either that year black hole where the system is failing them. as You know we applied for it for Niki back in March just before that date of her 20th birthday because before we were entitled to claim child tax credit for her we wanted to apply then to make it a smooth transition we never realized how difficult and stressful and complex that would actually be.
What the system actually puts people through needs a big overhaul. I will share what the issues were just so that if anyone reading is about to have a child hit that stage and still in education not because they are lazy but because it is important for their needs to be supported in the education environment till they either have learn the skills they need or the complexity of having more then one coexisting thing hinders their ability at the time to get and keep employment at that stage. First was the pip reassessment which was done by Phone consulation and having spoken with them honestly about how Niki is affected both by her diagnosis and her physical issues she has with her hypermobility and joints which pop out sometimes and her anxiety issues about being out and about, they upped the mobility to high rate as well as her already high rate of care , then the advocacy appointment at your home to be able to deal with the forms and to have financial control until they have learnt the money skills needed to be able to manage it themselves. for us right now that’s a goal we are working towards, for Niki it’s the difference between Want’s and needs. that part was easy the actual applying happened days before the lockdown occurred the first time so they had a copy of her education plan her diagnosis’s hospital reports They also wanted a letter from doctor about niks needs which i got then when i supplied it to them they wouldn’t accept it so had to go back to the doctors to get a fit for work note explaining why Nikis disabities affected her ability to work right now .first we got help from citizens advise to
See what we would be able to apply for the options were Income support credits only because she hadn’t worked before so hadn’t yet paid any national insurance stamps. We were told at first once you get that it will change over to Universal credit. But at the Job center they said no we had to apply first for Universal creadit this was after weeks of being pushed between the 2 different departments,
So the application for UC went in and after about five weeks they closed it with the reason being Niki was in education still, so then the citzen advise helped us apply for the income support credits only, this gave us another big issue they were asking for a three month fit for work note and would accept the six month one we had already supplied for the uc claim we had to go back to the doctors to try and get a three month one for them which the doctors would not give us because she still had three months left on her privious one. so I had to phone up the income suppot people to let them know I couldn’t get one they were giong to stop her claim but agreed because of covid to extend it before I would have to get another one. complex isn’t it this stystem they also sent out a form for a health assessment which took ages to get everything copied again and wait for the new diagnosis letter to send all info off together. also put in a madatory reconceration for universal credit we hadn’t heard back about the mandotory reconcideration. On September the 24th my wedding anniversary
It was supposed to be such a relaxed day but started real complicated I got on a conference call with UC myself and citizen advise just to see if there was any feed back because I had been trying for days only to be put on hold given multiple numbers to phone backwoods and forwards between departments trying to get some feed back but had no success, so Citizens advice got through on business line they told us that it had been turned down because of the health assessment and fit for work hadn’t been processed we then had to end the call and phone the health services to see how long it would be before we would get an appointment they said they could tell us when and there were over a 100000 waiting , we explained Niki’s situation and that we had been sorting it out since March we asked if they had any idea of when this would happen. to be honest it was my limit point of frustration I almost lost it infact I did cry just because it gave me so much anxiety and because I wanted the day to be peaceful and special. I Couldn’t contact UC via journal because they locked us out, and because her case was temporarily closed. Some how i managed to salvage my anniversary day and gain control of my emotions again. To be honest I never before suffered with anxiety till we went through diagnosis of the kids it was very traumatic experience. by this time the fit note from doctor had run out so we had to apply for a new one and supply it which then meant citizens advice again had to do a conference call with me because again I was being passed between departments. I couldn’t get update through asking through journal still locked out. we managed to get them to leave a direct message for the person handling Niki’s case. They phoned back about 48 hours later with this reply great news we had some up scaling training and Niki’s case was one they got brought up, we are putting it back into be reassessed and Niki should receive some money while they are waiting for health Assessment to be done. we will get back in touch soon she shouldn’t be left in hardship while she waits for it.
also a couple of days after that we were allocated a disability specialist who phoned to talk us about supporting us with the calm we chatted about Niki and her Needs and then I was informed I would have to do all the health assessments forms again once its approved. I told them we had all ready done them and were waiting for appointment. she said they would have to be done again when they asked. Bare in mind I already had given all hospital diagnosis doctors notes her EHCP , her Letters from college about her course and she already had an health assessment don’t by these people for her pip in march. fast forward to december on advice from citizen to put in a formal complaint about Niki’s claim and to contact a disability legal expert .
I phoned UC with the Number they gave me to make the formal compliant to they refused to accept it but said I would have to go through Niki’s case manmager who has now been changed to someone I have never even spoken too and also leave a message in niki’s journal to say I phoned to make the complaint, they said i would be contacted in 48 hours . no call back and no journal entry. The person who had been supporting me since march for Niki;s claim was no longer working at the citezens advice. I had to phone there phone line and explain it again thankfully they have kept records of this whole prcess and logged every step of the way.
After speaking to them around the middle of december and them opning up a face to face meeting to help me write the formal complaint and also copying in the MP at Houses of parliment to see if we can just get some feed back and her journal reopened for contact puporses. we were asking them to rectify and back date all money owing to her and get her case approved. as we were told first it would be bacdated to her 20th birthday then they changed their minds and asaid from when she was awarded the credits only income support.
Having recieved a reply from MP saying togive it a couple of weeks and if i havent heard anything back to get back intouch with them for help. I stiil have had not even an acknowlegement that they have recieved it, or no journal entry with any feed back. so the fight for her rights continues. but here is another perspective her cousin who is 18 without a disability applied 6 months after her and recieved it with in five weeks the difference is ability to work due to her disabilities and her legal document saying she is entitiled by law due to her disabilities an education till she is 25. why do i fight for her education and these courses she is doing because the system saw her excluded multiple times, they saw her have to change schools three times she lost years of education and had to retake her exams four times before getting a pass. she was assulted kicked and puched in the head while culed in a ball on the floor and left with concussion by another student in school, and had to take her exams in a place where the person who did that was walking past the window where she was taking them because she only was excluded for three days. she was left with crippling panic attacks.
Now my daughter is thriving in a safe and calm inviroment doing a course she loves and is accademically thriving, by learning about early years which she already passed last year and going on to this years course in health and social care she is not only learning about others she is learning about disabilities she is learning about self care and she is learning about a system that is ment to protect vunerable people. she is learning about abuse and she most importantly is learning about self abuse and neglecting yourself. she is still suffering form anxiety and depresiion but she is giving education her all she stiil has very bad sleeep issues but she gets up for online class, she has routine that helps her. she is learning valuble skills to give her the best chance of not being on benifits for life but getting into a carer she can help make a big chang to bring her experiences forward to bring better understanding to how it feels for someone with coexitsting issues. In 2 month it is going to be a whole year since the claim went in.
So if we look back at what I said about the amount of people I was told was waiting for that much needed health assesment before there claim could proceed over a hundred thousand, How many of those have advocates or are alone trying to get vital suport, how many of those have the assessment and get turned down and have to appeal all the way to the courts , how many of them are living with just pip, and bringing up families. and you meet this doctor for maybe an hour, and you never no the day you go maybe one of your better days and your based on that for your entitlement instead of consultants who see you recular specialist who montor your health doctors who see you when you struggle, mental health proffesionals who would be working with you if there lists werent so long. Add pandemic an no teacher time accept a few online classes.
while also living with depression anxiety tourettes, joints they give way not seing you family or boyfriend for a year the social skills you were just beggining to develope before the pandemic put on hold cause you can’t meet up with the friends you just made.
What I want to see in the future moving forward is further development of the EHCP to cover the years between 20-25 to add the benifits into the policy to stop our young adults suffering finatial hardship whist having to cope with many dibilitaing things.
Niki was one of the first people to go onto the new EHCP system when it first begun around 2014-2016
Her diagnosis came just after her plan was in place when it was started up and after enitial issues because of how many needed to change to the new sytem we were supposed to get one person handle it so we did have to keep telling everything over and over again to different people, I had real high hopes for thios to be a collaborated process that developed more over time, and yes getting them Education and health care plans for my kids has been the big difference it is support that has to be put in place , its accontability when needs aren’t met, its extra funding for schools to meet them needs with the objective for those with education to be given the same oppotunity to schooling as thier peers without needs. Its the opotunity to impact the whole families life, it the future towards living an independant and forfilling life if it is possible and we should always hold out hope even if i won’t happen for some. it is acceptance, adjustments and acknowledgement that their lives matter too. they have the same rights as everyone else.
I though long and hard about writing this because I dont want to have all those feelings flood through me again that I felt way back but at least i have had that oppotuninty to feel even a little tiny bit of what my kids live through every day. You dont make change by sitting quite and burying all that stuff it is only in sharing and bring it out in the open that others can begin to see a wider perspective of a systemic problem Diability , Black lives matter, Gender equality, Diversity is thier its every where we can ignor it embrace it and be brave enough to stand up to it it and change it. not through distuction and violence that will never solve the issue it just passes it down the generations as a neagtive thing but be brave enough to wruite it speak it and find soloutions to systemically change it. you have to have an open mind to here anothers perspective and whether you agree or not not do to others what has been done to you 2 wrongs don’t make it right. you just have to look out side yourself right at this moment in the world and see exactly what society has become and it isn’t good.
If you lead with compassion care and love yes maybe an idealistic point of view but you can make a difference one person at a time that person goes on to the next and so forth.
Sorry I waffel sometimes but I am feeling more impowered the more I write , the more I talk to others the more I share. I am soaking up the essence of people I meet and they are showing me that people are real good underneath if you just listen and see passed your perspective.
My Youtube is beginng to develope now it is a lot less scary doing the videos than I thought it would be infact i am finding it is empowering me more.
Here is tonight’s one gainging Hayley’s persective on friendship.
Playing with digital and genral goofing around ending blog on a positive
He cracked a smile , I may have jabbed him wnen he pulled silly faces though.
Yep that seriously woman you forgot again look after I told him I defo packed all the decorations away.
There is one thing about my hubby he is brutally honest with me which I like sometimes and sometimes I want him to zip it and say nothing. Early we were just talking about the online stuff god help me I said your right and was going to talk a bit more but he ended the converstaion where he wanted it to “YOUR RIGHT”
The other day I was late and rushed to get dressed just as I was about to leave he woke up and just huffed, he hated what i was wearing my skinny jeans wiuth big boots. the look he gave ment go change you look like a chav. I think i spoiled his view for the more polished look he has become used to seeing. I guess i just got used to making more of an effort everyday now. Taking time for myself.
Toomrow its and early start Jake has to go into school for his Hospitality and catering exam at 8.30 in morning the last of the mocks 90 minutes long.
Anyway much love Faye xx