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

Identifying the needs of disabled people living in the community: Theoretical and

acceptability issuesLaura Wilkinson-MeyersLaura Wilkinson-Meyers

PhD Student, University of AucklandPhD Student, University of Auckland

The issue

• Countries have benefit payments for general Countries have benefit payments for general populationpopulation

• Recognise that disabled people have additional Recognise that disabled people have additional needsneeds

• Question for Decision Makers: Question for Decision Makers:

– What are the additional needs/how much would it cost to What are the additional needs/how much would it cost to meet those needs?meet those needs?

– How should the needs be assessed? How should the needs be assessed?

– How should disabled people be paid?How should disabled people be paid?

Research Question

• What are the additional needs/costs associated with What are the additional needs/costs associated with disability?disability?

• PhDPhD– Look at actual resource needs (equipment, support, Look at actual resource needs (equipment, support,

transport and time) of disabled people in New Zealandtransport and time) of disabled people in New Zealand

• Today:Today:– Discuss methodological issues/propose a method for Discuss methodological issues/propose a method for

identifying additional needs/costsidentifying additional needs/costs

This approach…• Developed with disabled communityDeveloped with disabled community

– Disabled researchers part of research teamDisabled researchers part of research team

– NGO was full partner NGO was full partner

– Regular contact with government agencies Regular contact with government agencies

• Based on social model of disability, not Based on social model of disability, not medical modelmedical model

• Appropriate for people with congenital Appropriate for people with congenital impairments as well as injury related impairments as well as injury related

What is the goal?

• Good outcome – Good outcome –

– Identify additional resources disabled people Identify additional resources disabled people require to achieve a similar require to achieve a similar standard of livingstandard of living as as non-disabled peoplenon-disabled people

– Not the same as Not the same as compensationcompensation

– Includes Includes discriminationdiscrimination

What are the options?

1.1. Standard of Living SurveyStandard of Living Survey

2.2. Expenditure ApproachExpenditure Approach

– Expenditure DiariesExpenditure Diaries

– Direct SurveyDirect Survey

3.3. Budget Standards ApproachBudget Standards Approach

Problems with SOL survey and Expenditure approaches

• Problem 1: People limited to what they can currently Problem 1: People limited to what they can currently affordafford

– Way to overcome – Ask what they ‘need’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 Particular problem with disabled people – low expectations/knowledge of alternatives expectations/knowledge of alternatives

• Problem 3: Not acceptable to disabled communityProblem 3: Not acceptable to disabled community

– Not transparentNot transparent

– Not appropriate methodologyNot appropriate methodology

Budget Standards Approach• AdvantagesAdvantages

– Needs basedNeeds based

– TransparentTransparent

– FlexibleFlexible

– Appropriate for disabled communityAppropriate for disabled community

• DisadvantagesDisadvantages

– Seem objective but are subjectiveSeem objective but are subjective

– Circularity - comparing normative and actual expenditureCircularity - comparing normative and actual expenditure

– Keeping budget standards ‘standardised’Keeping budget standards ‘standardised’

What do we need?Our methodology sought to…. Our methodology sought to….

• Accurately represent what disabled people need rather than Accurately represent what disabled people need rather than what they can afford or what they ‘want’what they can afford or what they ‘want’

• Differentiate between needs and wants, necessities and Differentiate between needs and wants, necessities and luxuriesluxuries

• Be transparentBe transparent

• Be Needs based Be 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

Methodology:Consensual Budget Standards

• Step 1: Establish an appropriate standard of living for Step 1: Establish an appropriate standard of living for disabled people and construct initial ‘expert’ budgetsdisabled people and construct initial ‘expert’ budgets

• Step 2: Validate ‘expert’ budgets through community Step 2: Validate ‘expert’ budgets through community consultation & consensus building (focus groups)consultation & consensus building (focus groups)

• Step 3: Assign costs, quantities, lifetimes to Step 3: Assign costs, quantities, lifetimes to resources identifiedresources identified

• Step 4: Verify results, identify gaps in met and unmet Step 4: Verify results, identify gaps in met and unmet need, and identify range of available interventions need, and identify range of available interventions through a wider survey of the communitythrough a wider survey of the community

Step 1: Establish Appropriate Standard of Living & Construct Initial Budgets

• Engage ‘experts’ from the community to define an Engage ‘experts’ from the community to define an appropriate standard of living for disabled peopleappropriate standard of living for disabled people

• Experts represent the groups or households that will Experts represent the groups or households that will achieve the given standard of livingachieve the given standard of living

• Experts will construct the initial budgets of the Experts will construct the initial budgets of the additional equipment, support, transport and time additional equipment, support, transport and time required to achieve the given standard of livingrequired to achieve the given standard of living

Step 2: Validate ‘expert’ budgets through community consultation & debate

• Validate the expert budgets through a series Validate the expert budgets through a series of special focus groupsof special focus groups

• Groups are organized according to the Groups are organized according to the budgets or households representedbudgets or households represented

• Participants review the budgets and debate Participants review the budgets and debate whether or not items should be added or whether or not items should be added or removed; quantities should be increased or removed; quantities should be increased or decreaseddecreased

Step 3: Assign costs, quantities, lifetimes to resources identified

• Research Team incorporates changes made to the Research Team incorporates changes made to the budgets during the focus group phasebudgets during the focus group phase

• Research Team analyses the focus group qualitative Research Team analyses the focus group qualitative data to present rationale for inclusion/exclusion of data to present rationale for inclusion/exclusion of itemsitems

• Research Team assigns costs, quantities, and Research Team assigns costs, quantities, and lifetimes to the resources identifiedlifetimes to the resources identified

• Expert Reference Group reconvenes to review the Expert Reference Group reconvenes to review the outcomes of the focus group with the Research Team outcomes of the focus group with the Research Team and ensure costs, quantities and lifetimes are and ensure costs, quantities and lifetimes are appropriateappropriate

Step 4: Verify results & identify gaps

• A wider survey of the disabled community is A wider survey of the disabled community is used to identify used to identify

– gaps in the research, gaps in the research,

– particularly gaps in met and unmet need within the particularly gaps in met and unmet need within the community, and community, and

– alternative interventions that can be used to meet alternative interventions that can be used to meet needsneeds

Next steps

• Reference group Reference group

– Dissemination to disabled peopleDissemination to disabled people

– Create on-line resource? Create on-line resource?

• Develop an assessment toolDevelop an assessment tool

• Identify most appropriate payment Identify most appropriate payment mechanismmechanism

Thank you.

Contact Details:Contact Details:

****************************************************************************************************************

Laura E. Wilkinson-MeyersLaura E. Wilkinson-Meyers

Senior Tutor/PhD CandidateSenior Tutor/PhD Candidate

Health SystemsHealth Systems

School of Population HealthSchool of Population Health

University of AucklandUniversity of Auckland

Private Bag 92019, Auckland, New ZealandPrivate Bag 92019, Auckland, New Zealand

tel.  +64 (0) 9 373 7599 ext 87659tel.  +64 (0) 9 373 7599 ext 87659

fax. +64 (0) 9 373 7503fax. +64 (0) 9 373 7503

[email protected]@auckland.ac.nz

**************************************************************************************************************