Information & References
for young people with
Disabilities & Special needs By Charley Zakrzewski (25)
Introduction: This book is for you. It was made to help guide those with disabilities or special needs through the system of care, support and related questions. This booklet was made by me. I’m Charley Louise Zakrzewski, and I am 26 years old. I have been married for 3 years (my husband has Becker MD), and together we live just outside London with our family of pets. I was born with a rare condition that affects my immune system, blood, muscles and everything else. Now I have 24/7 waking care. My experience in the system was a struggle, transitioning onto adult services and gaining independence has been a fight every step of the way. I had to educate myself, as i found a real lack of information accessible to those with health conditions. I wanted to create something to help families and young people who are going through the same experience, who are finding the transition into adult services difficult. So with the support of my wonderful family, and everyone at Fixers in producing this resource, I made this, this is my booklet to you. I hope it helps you.
Charley (2017)
Statistics: 11 million
people with a limiting long term illness, impairment or disability living in the UK.
Statistics show that prevalence of disability rises with age. : 9% Children
23.8% Adult Pensioner 67.2%
Total breakdown focuses on those registered as disabled. Based on gov.uk findings.
Around a third of disabled people experience difficulties related to their impairment in accessing public, commercial and leisure goods and services. This is, of course, dramatically unfair. If this booklet is made to teach you anything, it’s to know your rights, and fight for them!
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Information on this page sourced from : www.gov.uk/government/statistics/disability-facts-and-figures
There are
Guide to the care act: A simple step by step guide for you to follow.
Investigate each part yourself to learn answers about what your local services can offer you. Think of these pages as a checklist!
1
Investigate Local Authority Responsibilities. What can your area do for you?
2
Learn about entitlement situations. Do you meet the criteria?
3
Assess your eligibility and needs. Can you get what you need?
4
Personalise your care and support. How do you pick, plan and pay?
5
Charges and financial assessment. Care isn’t free, how do you pay?
6
Payment law reform. Do you know the funding law?
One of the MOST IMPORTANT things to do, when you have a child with disabilities or special needs, is to get a statement of education and medical diagnosis. This will help when applying for support.
7
Safeguarding. Who protects you from risk of abuse?
8
Oversight and provider failure. What happens when a service closes?
9
Transition time. Moving from child to adult services?
10
Carers have rights too. Legal rights and support for carers?
11
Continue your care when you go. Want to move to a new area?
12
Appeals. Disagree and want to challenge a decision?
This information was sourced from the gov website www.gov.uk/government/publications/care-act-2014-part-1-factsheets And was updated in april 2016.
Adult Transition:
Until the age of 18, the care of children with long-term health conditions is the responsibility of child health and social care services. From 18, they are usually the responsibility of adult services. This change of responsibility in known as Adult Transition. This change should be planned ahead, and should take place between the ages of 16 and 18. This change will affect the following services Health and Social Care Mental Health Education Financial Benefits for the Young person and their family Work Housing This transition is an ongoing process, and should be tailored to your needs. But with so many changes that may happen, it’s good to read up on what may or may not affect you. The process is long, and there will be a lot of information to take in. This information was sourced from the nhs website (www.nhs.uk) if you want to learn more about adult transition, this might be a good starting point.
Positive tips to maintain a positive attitude!
Doctors do not know everything. They have tremendous skill, but trust your intuition.
Don’t be too hard on yourself.
You problem solve, you know how to adapt and you are emotionally strong.
Don’t measure yourself against anything. If you think you can do it. You definitely can.
Be open to knowing new people.
You will get to know people in fascinating and wonderful ways.
If you worry about the future, don’t.
Disability is much less important than the way you choose to live your life.
The right to love, education & employment. Don’t give up.
People may be afraid to say things honestly. Honesty is your friend.
Don’t live up to other’s expectations. Be what you want to become.
You’re in a costume all the time. Your disability is not who you are.
Exercise regularly and drink lots of water. If you stay on the couch, you’ll remain on the couch.
Information on this page was sourced from : www.huffingtonpost.com/2013/08/27/living-with-a-disability_n_3824699.html
Tips & Ideas:
Links & Helplines:
Places that were useful in Charleys search for more information.
citizensadvice.org.uk gov.uk care.org ageuk.org.uk whizz-kidz.org.uk gosh.nhs.uk letschatdisability.co.uk The one i found most useful -
skillsforcare.org.uk
This booklet has been produced with the help of Fixers, the campaign that gives young people a voice. These are the views / experiences / opinions of a young person and should not be relied on as a substitute for formal (medical or other) advice.
FixersUK
fixers.org.uk