Way Forward Assessment Tools

1. Way Forward Assessment Tools Kathy Eagar, Peter Samsa, Alan Owen and Louise Ramsay Centre for Health Service Development University of Wollongong Interchange Respite Care 2007 National Conference Twin Towers Coolangatta Tweed Heads, 31 July 2007

2. Overview Background A few results from a four level national field trial Some implications for the next steps in community care reform

3. Background The Way Forward 2004

4. National Intake Assessment System �Access to the Basic Care Tier will be through an easily administered intake assessment, while those with more intensive needs, necessitating Packaged Care services, will require a more rigorous comprehensive assessment. In this way, access to care will be based on assessed need and level of dependency that is determined consistently across the country.� The Way Forward, 2004, page 29

5. National Intake Assessment System �The Australian Government will fund the development of a nationally consistent intake assessment tool, encompassing the HACC nine-item dependency tool. The tool will, at a minimum, incorporate eligibility assessment for the HACC Program, the National Respite for Carers Program and the Day Therapy Centres Program. Appropriate pilot testing will be a key feature of this development work.� Action item 2.1

6. The Way Forward Tiered model of service provision

7. Our role CHSD commissioned to design two standard national assessment tools: ACCNA - Australian Community Care Needs Assessment (care recipients) CENA - Carer (eligibility) Needs Assessment (carers) And test both in a 4 level national field trial Our role was not to design an assessment system (eg, decide who should do assessments)

8. The field trial With focus on the CENA

9. The purpose and content of the CENA Scope, common language, compatibility and interoperability.

10. 3 key issues that the project had to address: Scope Purpose of assessment Compatibility with existing systems and tools mappable data elements assessment should not only occur at intake, but also at periodic intervals, forming a continuous record outcome has to be an improvement on current practices, not just the lowest common denominator

12. Depth and breadth

13. Carer Eligibility and Needs Assessment Designed to assess for a broad view of carer�s needs Provides information for service responses by multiple service types and agencies Automatically addresses reporting requirements

15. Role of the CENA Helps assessor determine eligibility for NRCP programs Assesses the needs of carers as consumers in their own right � a big culture change issue for some in HACC Stream carers to: other assessment as required � i.e. for aids and equipment, specialist mental health, etc direct to service provision (within assessment agency) referrals to more appropriate services Assist with care planning Helps assessor to determine priority for services

16. The CENA combines assessment Types 1 (eligibility), 3 (shallow and broad), 4 (deep and broad) and 7 (priority rating) Designed for CCRCs and other NRCP funded programs and can potentially be used by other organisations that provide services to carers Not every carer will receive all components of a CENA � different components may be used at different points in time according to the needs of the carer

17. Domains in the CENA Caregiving context Knowledge Functional level of care Care tasks and skills Health Social support Financial, legal and employment Coping strategies Confidence and competence Values and preferences Positive aspects of caregiving Strengths and risks Action Plan Plus: Client registration and contact details, demographic information These items are not measures of need - required to help formulate a service response

18. Some basic design concepts The CENA data elements are like a Data Dictionary a pool of standardised and common data elements for community care not a new software�based tool not in competition with existing tools And it is not a bigger Minimum Data Set not all items on all carers, not primarily for reporting, but can do reporting as a spin-off.

19. Design attributes Design for electronic environments, with paper as the back-up/secondary concern Design for both small and large services and service responses Build in explicit layers and modules for different service types and circumstances (i.e. emergency respite) Use data to refine triggers and thresholds over time � especially longer term Feed into system trials and continuous records

20. The results of field testing the CENA data elements To see how well they capture the needs of carers

21. 4 level field trial Level 1 - technical trial in three jurisdictions (NSW, SA & VIC) VIC CENA Only Level 2 - providers able to register for a copy of the tool/s to test themselves Level 3 - providers invited to access the ACCNA and the CENA on the CHSD website to test useability and acceptability Enter information but not save it permanently Level 4 - forums/targeted focus groups to evaluate acceptability to special needs groups

22. Purpose of field testing Test acceptability and useability of the data elements, with experienced assessors, across a range of settings and service types Testing was at the entry point to service provision and first contact assessment CENA trialled at reassessment as well Not about moving information around a system Not about creating a continuous record

23. How the CENA was administered 805 assessments Majority (73%) over the telephone 23% face-to-face 4% both face to face and over the telephone. However, amongst service providers, there were more face-to-face assessments than telephone assessments

25. Relationship of carer to CR

26. CENA source of referral

27. Circumstances that triggered CENA referrals (assessors choose more than one) Carer � emotional stress & strain 137 Care Recipient � increasing needs 107 Carer - maintain regular activities 48 Carer � acute physical exhaustion/ illness 46 Carer � slow physical health deterioration 41 One off event 41 Care Recipient � other factors 28 Carer - employment Issue 15 Carer � factors unrelated to care situation 14 Carer - return to work/study 7

28. Time taken - CENA CENA average completion time 43.5 minutes. 11% of cases took longer than one hour, and less than 1% took longer than two hours.

29. CENA � Most commonly Used Items in the Carer Details Section (above 60%) General Health 79% Access to Information 79% Employ Participation 77% Hours you provide care 76% Financial Strain 76% Health Interference 72% Sleep Difficulties 67% Did your caring role cause you to quit work 66% Sustainability of relationship 66% Work Interference 66% Can you fit in most of things you need to do 62%

30. CENA Priority Rating Aim: develop a standard and reliable way of determining priority to assist assessor decision making The field trial design was the first attempt at a priority rating for carers Priority rating not automatically generated in the field trial Potential now for auto-populating Priority ratings were potentially influenced by the depth of assessment completed

31. Combining items to help assessors assign priority for service Algorithms developed and tested Priority for service = needs + risks + strength of relationship Tested for acceptability and useability in routine practice and with special groups Detailed data analysis to see how experienced assessors used them

32. CENA PRIORITY FOR SERVICES = NEEDS + RISKS + STRENGTH OF RELATIONSHIP

33. Distribution of priority rating. Carer needs and risks, care recipient needs and relationship sustainability, rated by the assessor. The rating is a scale from 1 to 10, (1 = highest priority).

34. Views of assessors

35. Satisfaction with the CENA Satisfied 157 45.8%% Too busy 64 18.7% Comments 122 35.6% Total responses 343 100.0%

36. CENA - Confidence in outcomes of assessment Very Confident 53.0% Somewhat Confident 39.3% Not Confident 7.7%

37. Did the CENA miss any important information ?

38. CENA - are some questions better asked at second point of contact? YES 53.3% NO 36.7%

39. CENA � Were some items difficult to answer or inappropriate?

40. CENA � Priority Rating Agreement Yes 85.7% Should have been lower 0.5% Should have been higher 0.5% (but 13% not sure)

41. CENA � Examples of Positive Comments (Levels 1-3) �I think there were questions in the assessment that made her verbalize the positive and negative aspects of her caring role, i.e. positive aspects of care giving, and the future questions. I think that answering the questions increased her feeling of confidence in her role� �The Zarit carer screen could become a trigger to raise levels of attention regarding abuse� �Overall we believe that the content of the assessment is valid and the Zarit and K10 provide a more appropriate assessment of carer needs than many of the other instruments that have been proposed in the past� �The CENA fills an existing gap in addressing carers� needs�

42. CENA � Examples of Negative Comments(Level 1-3) �May be too intrusive for use at first point of contact� �Our primary concern surrounds the conduct of the assessment, primarily that much of it is inappropriate to be undertaken on anything but a face to face basis, preferably after some rapport have been developed between the assessor and the carer� ��Many care recipient ADL issues are not covered � dressing, and undressing, personal grooming, eating and drinking; toileting etc�� �The positive aspects of caring also raised concerns as the statements were not relevant to the Carer as their relationship before the caring role was strong and the caring role has not made a difference about how she feels about the statements�

43. Other levels of the field trial

44. Levels 2 and 3 Feedback Generally positive But the inter-relationships are too limited And some of the domains are not positive enough Scope of the ACCNA remains a big issue Training was an issue everywhere Most wanted the CENA and ACCNA combined

45. Level 4 Focus Groups ACT CALD ATSI Northern Territory Consumers Torres Strait Tasmania

46. Focus Groups Feedback Generally positive on the design, domains, expanded functional profile, derived items, action plan Carer positives, use of the 4-Item Zarit and K10 well supported Main concerns were length of time to use (for both), intrusiveness of psychosocial and financial items Support for carer self report sections

47. Focus Groups Feedback CALD groups wanted more items to cover greater depth on ethnicity, religion, some MDS items needed changing Aboriginal groups thought the carer items were very useful due to extended networks in communities Questions about how they would fit with existing systems Fear that they would be introduced with inadequate resources for training

48. Implications for the service system  CENA, principles. processes and implementation

49. Headlines The basic concepts, logic and structure are right Acceptable to the field The CENA did what it was supposed to do so did the ACCNA But, not surprisingly, some of the technical detail needs refinement A significant investment in training is required Fear in the field that the new approach will revert to become just another MDS

50. Culture Change Required Why assess carers as consumers in their own right? Recognition that carers are an �integral� part of the service system Carer assessment used as an instrument to help carers work through issues related to their caring role and context Care recipient needs & risk + carer needs and risks = sustainability of client Able to target services to those carers with increasing needs and potentially prevent crisis (i.e. relationship breakdown) In the field trial ALL community care agencies recognised the importance of capturing information on the needs of the carer (some for the first time)

51. Principles in implementation Think broadly but do what is necessary for the right service response beyond a single agency view Collect more information at the first point of contact but not for its own sake The purpose of collecting is to use it � to organise a service response, share the information and build up a continuous record Core information is the most commonly collected (and used) items

52. Principles in implementation Optional items should be in layers and modules, to be used depending on the purpose of the assessment, the service type and the needs of the consumer The usefulness of the components, the derived items, the triggers and prompts, and the Action Plan will have to be explained in a well designed training strategy

53. Next steps National: National Reference Group developing a phased implementation strategy National: further refinement possible in Access Points Demonstration Sites planned for late 2007 States and Territories: reconcile with existing tools Local: change management: culture, IT, training, intake and assessment systems

54. Prerequisites for a phased roll-out Agreement on training strategy re the culture change required - carers as consumers in their own right Community education on carers � communication strategy for sectors, DoHA and other jurisdictions Range of training options Self-directed learning package (paper and CD) Experts and champions linked to existing structures

55. Prerequisites for a phased roll-out Focus on building skills and competencies across programs at two levels As an assessor, with generic and service/agency skills Competencies related to the CENA Emphasise it is not an expanded MDS plus it can reduce reporting burdens Emphasise it is bigger than the HACC program Emphasise it does not have to replace existing systems investments, but can build on them