This survey forms part of a collaboration project between the NZ Federation of Disability Information Centres (NZFDIC) and Complex Care Group (CCG).  This project will explore the ‘voice’ of those supporting people with very high and complex needs.  We want to know if families feel their Voice is heard and is acted upon – and if not, then what would assist this to happen. 

It's important we define what we mean by high and complex needs.  These individuals may have:

Multiple disabilities including sensory disabilities, physical disabilities, severe intellectual disability, or serious and ongoing medical conditions
Behaviours that may require a very high level of support
Difficulty voicing their needs in appropriate forums due to their severe intellectual and learning disabilities
 
Thank you for your participation - we look forward to your responses.      

Click here for an information sheet about this project.  If you would prefer a paper version of this survey or for more information please contact Lisa at

complexcaregroup@xtra.co.nz or phone 027 266 7690 or 0800 852 693
Whilst it is helpful to have your name and some demographic details submitted as part of this survey, the survey results in our report will be anonymous.  We do this to encourage your full and frank responses to our questions.  Your responses in no way jeopardise any current or future supports you or the person you care for receive.

Question Title

* 1. Name of survey participant (parent or family member) – if you wish to remain anonymous please state ‘parent’ or ‘family member’ in this field

Question Title

* 2. Location in New Zealand (please name the town/city or region in which you live):

Question Title

* 3. Identity

Question Title

* 4. Age of survey participant (you).

Question Title

* 5. Gender of survey participant (you)

Question Title

* 6. Ethnic identity of the survey participant (you)

Question Title

* 7. Age of disabled person you support:

Question Title

* 8. Gender of disabled person you support:

Question Title

* 9. Ethnic identity of disabled person you support:

Question Title

* 10. Type of disability(ies) of the person you support – please state all that apply if possible:

Question Title

* 11. How would you rate your overall understanding of how the New Zealand disability sector and supports operate? Do you feel you have an overall view of how the system pieces together? Scale of 1 – 5 (1 being poor, 5 being excellent)

1 3 5
i We adjusted the number you entered based on the slider’s scale.

Question Title

* 12. Please tell us why you have given this rating to the question above?

Question Title

* 13. The Ministry of Health funds a range of disability supports such as Respite, Personal Cares, Household Management, Behaviour Support Services, Equipment Housing and Vehicle Modifications, etc based on eligibility determined by the Needs Assessment Service Coordination agency (NASC). If you or the person you care for receive such supports how well do you feel overall they meet the needs of your disabled family member? Scale of 1 – 5 (1 being poor, 5 being excellent)

1 3 5
i We adjusted the number you entered based on the slider’s scale.

Question Title

* 14. Please tell us why you have given this rating to the question above?

Question Title

* 15. How well do you feel you understand how the certain key components of the NZ disability “system” work? For example, what is your level of understanding of: Scale of 1 – 5 (1 being poor, 5 being excellent)

  1 2 3 4 5
Ministry of Education supports for eligible children/youths with High and Complex Needs (HCN) (types of support, eligibility criteria, how the support is used at school, etc)
Ministry of Health funded supports for eligible disabled people (types of support, eligibility criteria, how the support is used, etc)
Work and Income supports for children/youths with High and Complex Needs and/or their families (types of support, eligibility criteria, how the support is used, etc)
Post schooling opportunities for those with High and Complex Needs

Question Title

* 16. Please tell us why you have given these ratings to the question above?

Question Title

* 17. Are there any particular disability supports you would like to know more about, or are having trouble finding information about?

Question Title

* 18. If you would like us to provide you with information about the supports you have indicated above please enter your phone number and/or email address here:

At present the Ministry of Health is leading a project to redevelop the NZ disability system (supports/funding will be provided by other government ministries also).  The future disability system is likely to involve the key principles of Enabling Good Lives listed below.  We’d like you to indicate how relevant each principle is in the life of your disabled family member.

Question Title

* 19. Please grade each principle 1-5 (1 being not relevant, 5 being very relevant)

  1 2 3 4 5
Self-determination:
Disabled people are in control of their lives.
Beginning early:
Invest early in families/whānau to support them; to be aspirational for their disabled child; to build community and natural supports; and to support disabled children to become independent, rather than waiting for a crisis before support is available.
Person-centred:
Disabled people have supports that are tailored to their individual needs and goals, and that take a whole life approach rather than being split across programmes.
Ordinary life outcomes:
Disabled people are supported to live an everyday life in everyday places; and are regarded as citizens with opportunities for learning, employment, having a home and family, and social participation - like others at similar stages of life.
Mainstream first:
Disabled people are supported to access mainstream services before specialist disability services.
Mana enhancing:
The abilities and contributions of disabled people and their families are recognised and respected.
Easy to use:
Disabled people have supports that are simple to use and flexible.
Relationship building:
Supports build and strengthen relationships between disabled people, their whānau and community. 

Question Title

* 20. Please also comment as to how any of the principles could be adapted to be more relevant for severely disabled people or how you are already using any of the principles:

The United Nations Convention on the Rights of Persons with Disabilities is a significant driver of human rights for disabled New Zealanders. NZ signed the Convention in March 2007 and ratified it in September 2008. The Office for Disability Issues has a key role in promoting the convention and making information available about UNCRPD.

Question Title

* 21. How well do you feel you understand the Convention and its role in setting best practice standards for human rights for disabled people? Scale of 1 – 5 (1 being poor, 5 being excellent)

1 3 5
i We adjusted the number you entered based on the slider’s scale.

Question Title

* 22. Please comment on the question above:

NZ’s implementation of the United Nations Convention on the Rights of Persons with Disabilities is monitored by the United Nations.  New Zealand has an Independent Monitoring Mechanism (IMM) in place to track and guide our progress internally so we can report back to the UN.  Three groups comprise the IMM – the Human Rights Commission, Office of the Ombudsman and the Coalition of Disabled Persons Organisations.  The Disabled Persons Organisations (DPO) are largely managed and governed by disabled people. Some examples of a DPO are People First NZ, Blind Citizens NZ, Deaf Aotearoa etc.

Question Title

* 23. Do you or your disabled family member belong to a Disabled Persons Organisation?  (If No, then you will not need to answer the following four questions.)

Question Title

* 24. Which DPO do you belong to?

Question Title

* 25. How do you rate your ability to ‘be heard’ by your representative DPO?  Does your DPO hold meetings or surveys you can participate in?

Question Title

* 26. Does your DPO report back to its members about its role within the UNCRPD Independent Monitoring Mechanism (if it does have such a role within the IMM)?

Question Title

* 27. Do you feel you have opportunities to feedback to the Coalition of Disabled Persons Organisations regarding issues that affect your loved one with High and Complex Needs?

Question Title

* 28. Is your disabled family member able to complete surveys or attend and participate in meetings themselves in the disability sector?

Question Title

* 29. How does your disabled family member communicate?

If your disabled family member communicates via another family member please tell us how organisations, government departments, etc validate that communication?

Question Title

* 30. Do you feel listened to?

Question Title

* 31. Do you feel trusted as the communicator on behalf of your disabled family member?

Question Title

* 32. Are your concerns taken seriously and acted upon by the agency?

Question Title

* 33. In NZ those 18yrs and over (regardless of whether they are disabled) are legally adults and responsible for their own decisions. Decision making can be challenging for those with very high and complex needs involving intellectual impairment. Often they will need support from family members or trusted support workers. Do you believe you are “allowed” to speak on behalf of your disabled young adult after the age of 18yrs? 

Question Title

* 34. Do you have a mechanism or procedure in place to ensure your voice (speaking on behalf of your severely disabled family member) is heard?

Question Title

* 35. Has your young person ever been directly asked by a provider, NASC, government organisation how they feel about things?

Question Title

* 36. Have they ever participated in a service audit or review of services?

Question Title

* 37. We believe real, authentic stories – told or written by the disabled person and/or their close family or support persons – are powerful. They inform others with details about the life of a person with severe disability, intellectual impairment or high and complex needs. Sometimes others (including government representatives and providers organisations) who have no personal experience of disability are unaware of the complex issues we face. We’d appreciate you sharing your story with us - about a particular issue you have found especially challenging (regardless of how long or short it is). Please write it here or contact us if you’d prefer a phone, skype or face to face interview to share your story,

Question Title

* 38. Families have expressed in the past that because they are immensely busy and tired, they must choose carefully which meetings or activities they are involved in. Some families have historically reported that they feel they are always asked to “give” (participate in surveys and meetings) but receive little in return by way of updates or real progress. Please comment on your experience re this

Question Title

* 39. Is there anything else you would like to tell us or ask us? If you would like us to respond please give us your contact details.

Thank you. We sincerely appreciate your input whether by survey or interview.  Your participation has contributed to securing the rights of, and the value of ‘the Voice’, for which we are very grateful. 

At the conclusion of this project we will make available to you our completed report (including results of survey and interviews).  The final report will also be sent to the funder of this project.  We intend to share this report with government departments, Ministers and organisations in the disability sector – particularly decision makers and fund holders.  In this way we assist these stakeholders to ‘get it right’ for the most vulnerable members of our community.    

In this survey we have asked questions about your understanding of disability supports, policy and legislation.  If you would like more information on any type of disability related support (or if you have any questions or you think of additional information you’d like to submit to us) please contact Lisa Martin at complexcaregroup@xtra.co.nz  or 027 266 7690

PLEASE CLICK DONE TO SUBMIT YOUR SURVEY...

T