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Identifying the needs of disabled people living in the community: Theoretical and acceptability issues Laura Wilkinson-Meyers PhD Student, University of.

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Presentation on theme: "Identifying the needs of disabled people living in the community: Theoretical and acceptability issues Laura Wilkinson-Meyers PhD Student, University of."— Presentation transcript:

1 Identifying the needs of disabled people living in the community: Theoretical and acceptability issues Laura Wilkinson-Meyers PhD Student, University of Auckland

2 The issue Countries have benefit payments for general populationCountries have benefit payments for general population Recognise that disabled people have additional needsRecognise that disabled people have additional needs Question for Decision Makers:Question for Decision Makers: –What are the additional needs/how much would it cost to meet those needs? –How should the needs be assessed? –How should disabled people be paid?

3 Research Question What are the additional needs/costs associated with disability?What are the additional needs/costs associated with disability? PhDPhD –Look at actual resource needs (equipment, support, transport and time) of disabled people in New Zealand Today:Today: –Discuss methodological issues/propose a method for identifying additional needs/costs

4 This approach… Developed with disabled communityDeveloped with disabled community –Disabled researchers part of research team –NGO was full partner –Regular contact with government agencies Based on social model of disability, not medical modelBased on social model of disability, not medical model Appropriate for people with congenital impairments as well as injury relatedAppropriate for people with congenital impairments as well as injury related

5 What is the goal? Good outcome –Good outcome – –Identify additional resources disabled people require to achieve a similar standard of living as non-disabled people –Not the same as compensation –Includes discrimination

6 What are the options? 1.Standard of Living Survey 2.Expenditure Approach –Expenditure Diaries –Direct Survey 3.Budget Standards Approach

7 Problems with SOL survey and Expenditure approaches Problem 1: People limited to what they can currently affordProblem 1: People limited to what they can currently afford –Way to overcome – Ask what they need Problem 2: People limited to what they know about?Problem 2: People limited to what they know about? –Particular problem with disabled people – low expectations/knowledge of alternatives Problem 3: Not acceptable to disabled communityProblem 3: Not acceptable to disabled community –Not transparent –Not appropriate methodology

8 Budget Standards Approach AdvantagesAdvantages –Needs based –Transparent –Flexible –Appropriate for disabled community DisadvantagesDisadvantages –Seem objective but are subjective –Circularity - comparing normative and actual expenditure –Keeping budget standards standardised

9 What do we need? Our methodology sought to…. Accurately represent what disabled people need rather than what they can afford or what they wantAccurately represent what disabled people need rather than what they can afford or what they want Differentiate between needs and wants, necessities and luxuriesDifferentiate between needs and wants, necessities and luxuries Be transparentBe transparent Be Needs basedBe Needs based Be appropriate for and acceptable to the disabled communityBe appropriate for and acceptable to the disabled community Engage the communityEngage the community Provide robust results that decision makers can useProvide robust results that decision makers can use

10 Methodology: Consensual Budget Standards Step 1: Establish an appropriate standard of living for disabled people and construct initial expert budgetsStep 1: Establish an appropriate standard of living for disabled people and construct initial expert budgets Step 2: Validate expert budgets through community consultation & consensus building (focus groups)Step 2: Validate expert budgets through community consultation & consensus building (focus groups) Step 3: Assign costs, quantities, lifetimes to resources identifiedStep 3: Assign costs, quantities, lifetimes to resources identified Step 4: Verify results, identify gaps in met and unmet need, and identify range of available interventions through a wider survey of the communityStep 4: Verify results, identify gaps in met and unmet need, and identify range of available interventions through a wider survey of the community

11 Step 1: Establish Appropriate Standard of Living & Construct Initial Budgets Engage experts from the community to define an appropriate standard of living for disabled peopleEngage experts from the community to define an appropriate standard of living for disabled people Experts represent the groups or households that will achieve the given standard of livingExperts represent the groups or households that will achieve the given standard of living Experts will construct the initial budgets of the additional equipment, support, transport and time required to achieve the given standard of livingExperts will construct the initial budgets of the additional equipment, support, transport and time required to achieve the given standard of living

12 Step 2: Validate expert budgets through community consultation & debate Validate the expert budgets through a series of special focus groupsValidate the expert budgets through a series of special focus groups Groups are organized according to the budgets or households representedGroups are organized according to the budgets or households represented Participants review the budgets and debate whether or not items should be added or removed; quantities should be increased or decreasedParticipants review the budgets and debate whether or not items should be added or removed; quantities should be increased or decreased

13 Step 3: Assign costs, quantities, lifetimes to resources identified Research Team incorporates changes made to the budgets during the focus group phaseResearch Team incorporates changes made to the budgets during the focus group phase Research Team analyses the focus group qualitative data to present rationale for inclusion/exclusion of itemsResearch Team analyses the focus group qualitative data to present rationale for inclusion/exclusion of items Research Team assigns costs, quantities, and lifetimes to the resources identifiedResearch Team assigns costs, quantities, and lifetimes to the resources identified Expert Reference Group reconvenes to review the outcomes of the focus group with the Research Team and ensure costs, quantities and lifetimes are appropriateExpert Reference Group reconvenes to review the outcomes of the focus group with the Research Team and ensure costs, quantities and lifetimes are appropriate

14 Step 4: Verify results & identify gaps A wider survey of the disabled community is used to identifyA wider survey of the disabled community is used to identify –gaps in the research, –particularly gaps in met and unmet need within the community, and –alternative interventions that can be used to meet needs

15 Next steps Reference groupReference group –Dissemination to disabled people –Create on-line resource? Develop an assessment toolDevelop an assessment tool Identify most appropriate payment mechanismIdentify most appropriate payment mechanism

16 Thank you. Contact Details: ******************************************************** Laura E. Wilkinson-Meyers Senior Tutor/PhD Candidate Health Systems School of Population Health University of Auckland Private Bag 92019, Auckland, New Zealand tel. +64 (0) 9 373 7599 ext 87659 fax. +64 (0) 9 373 7503 l.wilkinson-meyers@auckland.ac.nz*******************************************************


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