The Disabled Children’s Partnership is a coalition of over 30 organisations that have come together to campaign for improved health and social care provision for disabled children, young people and their families.
 
This survey will be used to understand more about the day-to-day lives of disabled children, young people and their families and to help the Disabled Children’s Partnership campaign.

Included within the questions are some that you might find difficult to answer. We have asked these questions so that we can get a realistic and honest understanding of your life and experiences. This will help us to campaign for improved health and social care provision for disabled children.

Our ambition is to complete the biggest survey ever undertaken of families with disabled children.

The survey will take a few minutes to complete. Please answer all the questions and do so as accurately as you can.

All responses will be anonymous.

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* 1. Are you, please select any/ all that apply...

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* 2. How many children / young people with disabilities in each of the following age categories do you personally care for?

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* 3. What kind of disability / disabilities does the child or children that you care for have? please select any/ all that apply

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* 4. How often do you receive practical support regarding health and social care (for example: short breaks or respite care, portage services, occupational therapy, mental health services or funding for equipment), in caring for your child with disabilities, outside of your family and friends?

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* 5. How confident are you that you can currently meet all of the care needs for the child / children with disabilities that you care for?

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* 6. How confident are you that you will be able to meet the care needs for the child / children with disabilities that you care for, once they leave school?

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* 7. How confident are you that the care needs of the child / children you care for would be met, if you were no longer able to care for them?

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* 8. How confident are you in the level of care the child / children you care for will receive for the rest of their life?

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* 9. How often, if at all, do you worry or feel anxiety about meeting the care needs for the child / children with disabilities that you care for?

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* 10. In your experience, have health and social care services (for example: short breaks or respite care, portage services, occupational therapy, child and adolescent mental health services or equipment funding) for children with disabilities, and their families, been reduced in the area in which you live in the past 5 years?

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* 11. Do you agree or disagree with the following statements?

  Yes  No Don't know
In my local area, health and social care services for disabled children and their families are inadequate and not fit for purpose
Health and social care services for disabled children and their families are inadequate and not fit for purpose across the country 
I have to fight to get the services that the disabled child / children I care for need(s)

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* 12. Do you think that health and social care services for families and children with disabilities are joined up or integrated in your area (i.e. services and healthcare professionals communicate, work well together and provide joined up care for disabled children)?

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* 13. Which, if any, of the following issues have you personally faced due to insufficient, inadequate or inappropriate health and social care services in your area? please select any/ all that apply.

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* 14. As a result of providing care to your child / children with a disability, have you personally experienced any of the following? please select any/all that apply

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* 15. Have you ever fundraised for health equipment or adaptions for the disabled child / children that you care for, because you couldn’t get something from the NHS or via your council?

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* 16. Have you ever received a loan or borrowed money off family or friends, for health equipment or adaptions for the disabled child / children that you care for, because you couldn’t get something from the NHS or via your council?

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* 17. Which if any of the following types of health and social care support / services do you currently receive for the disabled child / children that you care for? please select any / all that apply

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* 18. Which if any of the following health and social care support would you like to receive more of? please select any / all that apply

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* 19. For the child / children with disabilities that you care for, roughly how many hours a week do you spend caring for them?

1 hour 168 hours
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i We adjusted the number you entered based on the slider’s scale.

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* 20. Roughly, how many hours a week do you spend speaking to service providers and healthcare professionals – in person, over the phone and via other communications – regarding the health and social care of the child / children with disabilities that you care for?

1 hour 50 hours
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i We adjusted the number you entered based on the slider’s scale.

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* 21. Do you agree or disagree with the following statements?

  Yes No  Don't know
Caring for a disabled child has enhanced my life
Caring for a disabled child has developed me as a person
Caring for a disabled child has brought me happiness and fulfilment
I am proud to have a disabled child
I am proud of my disabled child

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* 22. Do you think the general public has a good understanding of the issues and challenges faced with regards to the health and social care of disabled children, young people and their families?

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* 23. Do you feel you have to spend time educating people and / or promoting the rights of disabled children, young people and their families to others?

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* 24. Has anyone ever made an offensive comment towards or about the disabled child / children you care for?

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* 25. What environments do you find the most difficult to navigate or give you the most anxiety, on a day-to-day basis, when encountered with the child / children with disabilities that you care for? please select any/ all that apply 

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* 26. NOTE TO ALL: the next few questions aim to understand a bit more about you, so that we can see if answers differ between people with different areas and backgrounds. All of the answers that you provide are fully confidential.

What is your gender?

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* 27. What is your age?

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* 28. In which of the following areas do you currently live?

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* 29. Before you go, are there any stories you would like to tell us about the challenges you have faced and how your life could be improved through better health and social care services?

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