The pathways from acute care and housing
outcomes of young people with ABI at risk of
placement in aged care
Libby Callawa...
Collaborators
2
Di Winkler & Kerri West
Natasha Lannin & Jacqui Morarty
Sharon Strugnell & Suzanne Shaw
Sue Sloan
Overview !
Pathways from acute hospitals for people with severe ABI
Outcomes – health, community integration and participa...
Young people in RAC and an NDIS
Estimated 6,209 people under 65 years living in RAC nationally, most
often with acquired /...
5
6
N = 105 N (%)
Three or more health conditions 92 (88%)
Two or more behaviours of concern 59 (56%)
Evidence of mental hea...
7
Residence prior to admission to RAC
N = 96
n %
Home 36 37%
In hospital longer than six months 17 18%
Other aged care fac...
8
Pathways to current RAC
Winkler, Sloan & Callaway, 2007
Winkler, Sloan & Callaway, 2007
Pathways from acute hospitals – study aims
1.  Examine the characteristics and support needs of people aged
<65 years who ...
Method
Ongoing prospective study
NEAF and Victorian Site Specific Human Ethics approval secured,
now approvals across tota...
Participant Characteristics
16 people eligible for study in year one, N = 12 and at this point N = 9
with 12-month data.
A...
Results
12
Results
13
* *
* *
Results
14
*
15
0	
  
5	
  
10	
  
15	
  
20	
  
25	
  
Bob	
  pre-­‐
ABI	
  
Bob	
  
ABI12mth	
  
Joe	
  pre-­‐
ABI	
  
Joe	
  
ABI12m...
16
0	
  
5	
  
10	
  
15	
  
20	
  
25	
  
Bob	
  pre-­‐
ABI	
  
Bob	
  
ABI12mth	
  
Joe	
  pre-­‐
ABI	
  
Joe	
  
ABI12m...
Results
Support
17
Limitations
Comprehensive recruitment strategy used, however smaller than
anticipated numbers seen
Range of systemic chang...
Accommodation outcomes and transitions
– study aims
1.  To examine living situation outcomes and housing and
support model...
Participants
•  N = 43
•  Age M = 28.42 (SD = 12.74)
•  Time post injury M = 6.73 (SD = 5.14)
•  58% male
•  76% TBI, 21% ...
Living situation – pre-injury
21
Living situation
n = 43
n (%)
Home alone – no support 6 (14%)
Home alone – with support 1...
The Community Approach to Participation
22
(Sloan, Callaway, Winkler et al, 2004, 2009a; 2009b; 2012)
Three distinct groups!
Total support hours reduced for 41.86% (n = 18) of the sample by
an average of 40.14 (SD = 46.62) h...
Three distinct groups!
Changes in level of support need (baseline-year 1)
Changes in level of community integration (basel...
Living situation – intervention period
25
Living situation n = 43 Baseline T1 T2 T3
Home-like settings
Home alone – no sup...
Living situation – intervention period
26
Living situation n = 43 Baseline T1 T2 T3
Home-like settings
Home alone – no sup...
Living situation – intervention period
27
Living situation n = 43 Baseline T1 T2 T3
Home-like settings
Home alone – no sup...
Living situation – intervention period
28
Living situation n = 43 Baseline T1 T2 T3
Home-like settings
Home alone – no sup...
Characteristics of participants who transitioned
29
Participant Age at
baseline
Years since
injury
Type of
injury
Compensi...
Housing and support settings
30
Participant Baseline T1 T2 T3
A RAC SSA SSA Home alone
with support
B SSA SSA SSA Home alo...
Housing and support transitions
31
Participant Baseline T1 T2 T3
F Home alone with
support (rental)
Home alone with
suppor...
Factors critical to transition
32
Factor % of transitions where factor
endorsed
Client/family goal for 100%
Greater indepe...
Factors critical to transition
33
Factor % of transitions where factor
endorsed
Improvements in person’s function 91.7%
In...
Findings / questions
Shared supported accommodation group = mainly non-
compensable injuries with higher level of daily su...
Findings / questions
In contrast, 86% of the participants residing in home-like settings
had compensable injuries and rece...
Findings / questions
Possible to achieve transitions to more independent, home-like
situations many years post-injury, reg...
Findings / questions
High levels of gratuitous support from family often required.
How do we ensure families are supported...
The NDIS will be responsible for
Individualised planning and assessment with focus on goals and
aspirations.
Timely provis...
The Housing Toolkit!
39
Findings
Current restricted range of pathways out of acute setting, notably
when the person is not ‘rehabilitation ready’....
Implications
Timely access to equipment and support is necessary to facilitate
opportunities for transition to community l...
Implications
Summer Foundation Information and Connections role – at a
minimum a person discharged to RAC can be linked
Co...
About the Summer Foundation
Established in 2006, the mission of the Summer Foundation is to
resolve the need for young peo...
AIHW National Aged Care Data Clearinghouse (2014). AIHW National Aged Care Data Clearinghouse Data Request:
Younger people...
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Libby Callaway - Summer Foundation Occupational Therapy Dept Monash University - Pathways & Longitudinal Outcomes of People with High & Complex Care Needs Following ABI

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Libby Callaway delivered the presentation at the 2014 Younger People with very High & Complex Care Needs Conference.

The 4th Annual Younger People with very High & Complex Care Needs Conference focused on topics such as report on Summer Foundation’s preliminary findings from NDIS Launch sites in Barwon & the Hunter Valley, identify policy & practice opportunities & barriers for YPINH that arise from the NDIS.

For more information about the event, please visit: http://www.informa.com.au/youngerpeopleconference14

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Libby Callaway - Summer Foundation Occupational Therapy Dept Monash University - Pathways & Longitudinal Outcomes of People with High & Complex Care Needs Following ABI

  1. 1. The pathways from acute care and housing outcomes of young people with ABI at risk of placement in aged care Libby Callaway1,2 libby.callaway@summerfoundation.org.au 1 Summer Foundation Ltd, Box Hill, Australia 2 Monash University, Frankston, Australia
  2. 2. Collaborators 2 Di Winkler & Kerri West Natasha Lannin & Jacqui Morarty Sharon Strugnell & Suzanne Shaw Sue Sloan
  3. 3. Overview ! Pathways from acute hospitals for people with severe ABI Outcomes – health, community integration and participation Current housing and support models that people access following ABI Accommodation transitions and outcomes of people with severe ABI 3
  4. 4. Young people in RAC and an NDIS Estimated 6,209 people under 65 years living in RAC nationally, most often with acquired / late onset neurological impairment (89%) (AIHW National Aged Care Data Clearinghouse, 2014; Winkler, Holgate, Sloan, & Callaway, 2012) Many (59%) have an acute hospital stay prior to first RAC admission (Winkler, Sloan & Callaway, 2007) YPIRAC numbers projected to increase prior to full NDIS implementation (Winkler, Callaway & Guthrie, 2013) NDIS not designed to address housing need – availability of affordable and accessible housing required (Bonyhady, 2013) 4
  5. 5. 5
  6. 6. 6 N = 105 N (%) Three or more health conditions 92 (88%) Two or more behaviours of concern 59 (56%) Evidence of mental health issue 75 (71%) Level of support need – require assistance or surveillance 20-24 hrs/day 52 (50%) Characteristics Winkler, Holgate, Sloan & Callaway, 2012
  7. 7. 7 Residence prior to admission to RAC N = 96 n % Home 36 37% In hospital longer than six months 17 18% Other aged care facility (high care) 17 18% Other supported accommodation 11 12% Parent’s home 8 8% Other aged care facility (low care) 7 7% Pathways to RAC Winkler, Sloan & Callaway, 2007
  8. 8. 8 Pathways to current RAC Winkler, Sloan & Callaway, 2007 Winkler, Sloan & Callaway, 2007
  9. 9. Pathways from acute hospitals – study aims 1.  Examine the characteristics and support needs of people aged <65 years who sustain severe ABI and stay >30 days in an acute hospital bed 2.  Document the issues and barriers that impact discharge and participant outcomes 3.  Examine the pathways, services received and health and participant outcomes of the group longitudinally 9
  10. 10. Method Ongoing prospective study NEAF and Victorian Site Specific Human Ethics approval secured, now approvals across total 12 sites Recruitment in Year One with longitudinal data collection at six time points Pre-injury (gathered at baseline), 30 days post injury (baseline), 3 months, 6 months, 12 months, 18 months and 24 months post injury Measures include GOS-E, CANS, FIM, CIQ, and SF-12 for person with ABI and interview and FOM for family 10
  11. 11. Participant Characteristics 16 people eligible for study in year one, N = 12 and at this point N = 9 with 12-month data. Age M = 41 years (SD = 14yrs, R = 16-60yrs) 56% male (N = 5) Seven experienced TBI and five CVA, three had road accident compensation Two died during the course of the study -  one received palliation at four months post-injury -  the other died unexpectedly 53 days post-injury. 11
  12. 12. Results 12
  13. 13. Results 13 * * * *
  14. 14. Results 14 *
  15. 15. 15 0   5   10   15   20   25   Bob  pre-­‐ ABI   Bob   ABI12mth   Joe  pre-­‐ ABI   Joe   ABI12mths   Jenny  pre-­‐ ABI   Jenny   ABI12mths   Emily  pre-­‐ ABI   Emily  post   ABI12mths     Sandra   pre-­‐ABI   Sandra   ABI12mths   Sam  pre-­‐ ABI   Sam   ABI12mths   Ted  pre-­‐ ABI   Ted   ABI12mths   Accumulated  CIQ  Subbscale  Sccors     Community  Integra7on  Ques7onnaire  stacked  subscales  for  pre-­‐ABI  and   12mths  post-­‐ABI   Home  Integra?on   Social  Integra?on   Produc?ve  Ac?vi?es  
  16. 16. 16 0   5   10   15   20   25   Bob  pre-­‐ ABI   Bob   ABI12mth   Joe  pre-­‐ ABI   Joe   ABI12mths   Jenny  pre-­‐ ABI   Jenny   ABI12mths   Emily  pre-­‐ ABI   Emily  post   ABI12mths     Sandra   pre-­‐ABI   Sandra   ABI12mths   Sam  pre-­‐ ABI   Sam   ABI12mths   Ted  pre-­‐ ABI   Ted   ABI12mths   Accumulated  CIQ  Subbscale  Sccors     Community  Integra7on  Ques7onnaire  stacked  subscales  for  pre-­‐ABI  and   12mths  post-­‐ABI   Home  Integra?on   Social  Integra?on   Produc?ve  Ac?vi?es   * * * * * * *
  17. 17. Results Support 17
  18. 18. Limitations Comprehensive recruitment strategy used, however smaller than anticipated numbers seen Range of systemic changes reducing LoS, including return to referring regional hospital as soon as medically stable (<14 days) Difficult to identify the re-admission group Reduction in incidence of road accident-related traumatic brain injury Palliation Now 19 participants in this study 18
  19. 19. Accommodation outcomes and transitions – study aims 1.  To examine living situation outcomes and housing and support models of people with severe ABI provided with 3 years of community allied health intervention based on the Community Approach to Participation (CAP) 2.  To document accommodation transitions, and reasons for these, within the 3-year period. (Sloan, Callaway. Winkler et al, 2012) 19
  20. 20. Participants •  N = 43 •  Age M = 28.42 (SD = 12.74) •  Time post injury M = 6.73 (SD = 5.14) •  58% male •  76% TBI, 21% hypoxic injury, 12% CVA •  62% funded by the TAC 20
  21. 21. Living situation – pre-injury 21 Living situation n = 43 n (%) Home alone – no support 6 (14%) Home alone – with support 1 (2.3%) Home with friends 2 (4.7%) Home with partner and / or dependent children 9 (20.9%) Home with family 23 (53.5%) Australian Defence Force 2 (4.7%)
  22. 22. The Community Approach to Participation 22 (Sloan, Callaway, Winkler et al, 2004, 2009a; 2009b; 2012)
  23. 23. Three distinct groups! Total support hours reduced for 41.86% (n = 18) of the sample by an average of 40.14 (SD = 46.62) hours per week Total support hours for 16.28% (n = 7) of the sample increased by an average of 7.14 (SD = 3.89) hours per week Hours of support remained constant for 41.86% (n = 18) of participants 23
  24. 24. Three distinct groups! Changes in level of support need (baseline-year 1) Changes in level of community integration (baseline-year 1 and year 1-year 2) Changes in level of role participation (year 2-year 3) 24
  25. 25. Living situation – intervention period 25 Living situation n = 43 Baseline T1 T2 T3 Home-like settings Home alone – no support 0 0 0 0 Home alone – with support 3 (7%) 5 (11.6%) 5 (11.6%) 7 (16.3%) Home with friends 1 (2.3%) 1 (2.3%) 1 (2.3%) 1 (2.3%) Home with partner and / or dependent children 8 (18.6%) 8 9 (20.9%) 9 (20.9%) Home with family 15 (34.9%) 15 (34.9%) 14 (32.6%) 14 (32.6%) Living with others in a separate area 1 (2.3%) 0 0 0 Disability-specific settings Shared supported accommodation 8 (18.7%) 9 (21%) 9 (21%) 7 (16.3%) Cluster unit 0 1 (2.3%) 1 (2.3%) 1 (2.3%) RAC 4 (9.3%) 2 (4.7%) 2 (4.7%) 3 (7%) Secure neuropsychiatric setting 3 (7%) 2 (4.7%) 2 (4.7%) 1 (2.3%)
  26. 26. Living situation – intervention period 26 Living situation n = 43 Baseline T1 T2 T3 Home-like settings Home alone – no support 0 0 0 0 Home alone – with support 3 (7%) 5 (11.6%) 5 (11.6%) 7 (16.3%) Home with friends 1 (2.3%) 1 (2.3%) 1 (2.3%) 1 (2.3%) Home with partner and / or dependent children 8 (18.6%) 8 (18.6%) 9 (20.9%) 9 (20.9%) Home with family 15 (34.9%) 15 (34.9%) 14 (32.6%) 14 (32.6%) Living with others in a separate area 1 (2.3%) 0 0 0 Disability-specific settings Shared supported accommodation 8 (18.7%) 9 (21%) 9 (21%) 7 (16.3%) Cluster unit 0 1 (2.3%) 1 (2.3%) 1 (2.3%) RAC 4 (9.3%) 2 (4.7%) 2 (4.7%) 3 (7%) Secure neuropsychiatric setting 3 (7%) 2 (4.7%) 2 (4.7%) 1 (2.3%)
  27. 27. Living situation – intervention period 27 Living situation n = 43 Baseline T1 T2 T3 Home-like settings Home alone – no support 0 0 0 0 Home alone – with support 3 (7%) 5 (11.6%) 5 (11.6%) 7 (16.3%) Home with friends 1 (2.3%) 1 (2.3%) 1 (2.3%) 1 (2.3%) Home with partner and / or dependent children 8 (18.6%) 8 (18.6%) 9 (20.9%) 9 (20.9%) Home with family 15 (34.9%) 15 (34.9%) 14 (32.6%) 14 (32.6%) Living with others in a separate area 1 (2.3%) 0 0 0 Disability-specific settings Shared supported accommodation 8 (18.7%) 9 (21%) 9 (21%) 7 (16.3%) Cluster unit 0 1 (2.3%) 1 (2.3%) 1 (2.3%) RAC 4 (9.3%) 2 (4.7%) 2 (4.7%) 3 (7%) Secure neuropsychiatric setting 3 (7%) 2 (4.7%) 2 (4.7%) 1 (2.3%)
  28. 28. Living situation – intervention period 28 Living situation n = 43 Baseline T1 T2 T3 Home-like settings Home alone – no support 0 0 0 0 Home alone – with support 3 (7%) 5 (11.6%) 5 (11.6%) 7 (16.3%) Home with friends 1 (2.3%) 1 (2.3%) 1 (2.3%) 1 (2.3%) Home with partner and / or dependent children 8 (18.6%) 8 (18.6%) 9 (20.9%) 9 (20.9%) Home with family 15 (34.9%) 15 (34.9%) 14 (32.6%) 14 (32.6%) Living with others in a separate area 1 (2.3%) 0 0 0 Disability-specific settings Shared supported accommodation 8 (18.7%) 9 (21%) 9 (21%) 7 (16.3%) Cluster unit 0 1 (2.3%) 1 (2.3%) 1 (2.3%) RAC 4 (9.3%) 2 (4.7%) 2 (4.7%) 3 (7%) Secure neuropsychiatric setting 3 (7%) 2 (4.7%) 2 (4.7%) 1 (2.3%)
  29. 29. Characteristics of participants who transitioned 29 Participant Age at baseline Years since injury Type of injury Compensible (yes / no) A 49 1.3 CVA No B 49 1.5 TBI Yes C 21 1.9 Hypoxia No D 52 3 Hypoxia No E 41 2.5 CVA No F 54 20.6 CVA Yes G 34 19 TBI Yes H 50 4.7 TBI Yes I 36 11.3 TBI Yes J 28 12.7 TBI Yes
  30. 30. Housing and support settings 30 Participant Baseline T1 T2 T3 A RAC SSA SSA Home alone with support B SSA SSA SSA Home alone with support C RAC Home with family Home with family Home with family D Secure neuropsychiatric setting Cluster unit Cluster unit Cluster unit E Secure neuropsychiatric setting Secure neuropsychiatric setting Secure neuropsychiatric setting RAC
  31. 31. Housing and support transitions 31 Participant Baseline T1 T2 T3 F Home alone with support (rental) Home alone with support (rental) Home alone with support (owner) Home alone with support (owner) G Living with others in separate area Home alone with support (rental) Home alone with support (owner) Home alone with support (owner) H Home alone with support (rental) Home alone with support (rental) Home alone with support (owner) Home alone with support (owner) I Home with family Home with family Home with partner and / or children Home with partner and / or children J Home with family Home alone with support (owner) Home alone with support (owner) Home alone with support (owner)
  32. 32. Factors critical to transition 32 Factor % of transitions where factor endorsed Client/family goal for 100% Greater independence Greater choice and control Age-appropriate option (life cycle stage) Home ownership Transition from living with parents Enhanced quality of life 83.3% 75% 75% 41.7% 25% 8% Availability/awareness of resources 100% Adequate ongoing paid support Support to facilitate transition Ongoing family support Vacancy at disability-specific setting Advocacy 91.7% 83.3% 41.7% 33.3% 8.3%
  33. 33. Factors critical to transition 33 Factor % of transitions where factor endorsed Improvements in person’s function 91.7% Increased skills in everyday tasks Willingness to manage risks Improved cognitive-behavioural function Improved physical skills 58.3% 50% 41.7% 0% Issues with current housing and support option 58.3% Dissatisfaction with existing provider Dissatisfaction with co-residents Inadequate current level of support Deterioration in behaviour/increased distress Geographical location of accommodation Family breakdown / burn out 33.3% 25% 16.7% 16.7% 8.3% 8.3%
  34. 34. Findings / questions Shared supported accommodation group = mainly non- compensable injuries with higher level of daily support at all four time points. Was SSA a choice or the only option? This group received higher total hours of support, which averaged 170.83 hours per week at baseline and did not change significantly over the 3 years. Is it that their needs did not change, or was it that the model could not be adjusted to indicate this change? What are options for people who need ‘line of sight’ support? 34
  35. 35. Findings / questions In contrast, 86% of the participants residing in home-like settings had compensable injuries and received an average of 91.46 hours of support per week at baseline. Does timely access to individualised support, equipment and home modifications impact choice? Reduced to 70.97 hours per week over the 3-year intervention period, a change that was statistically significant. What factors impact support need – environment, contextualised rehabilitation, individualised support 35
  36. 36. Findings / questions Possible to achieve transitions to more independent, home-like situations many years post-injury, regardless of injury severity. How can we use an NDIS to make this possibility a reality? What will people and their families need to be able to make decisions around this? Will the planning process explore goals / aspirations? However, for some people level of support need will not change – but participation levels can. How do we capture and ensure value weighted to the QoL impacts of funded supports? 36
  37. 37. Findings / questions High levels of gratuitous support from family often required. How do we ensure families are supported, as well as the person? Individualised funding provided scope to adjust support to reflect gains in independence, community integration and role participation that the fixed models and hours of support in disability-specific accommodation did not. How do we ensure that there is accessible, affordable housing available for people to have choice of where / how they receive support, and transition across models? 37
  38. 38. The NDIS will be responsible for Individualised planning and assessment with focus on goals and aspirations. Timely provision of the equipment, home modifications, input for skill development and support people require. User cost of capital contribution, where person requires an integrated housing and support model and cost of accommodation component exceeds reasonable contribution from individual. Local Area Coordinator input to support access to mainstream services. NDIS Operational Guidelines – Interface with Housing and Community Infrastructure NDIA, 2014 38
  39. 39. The Housing Toolkit! 39
  40. 40. Findings Current restricted range of pathways out of acute setting, notably when the person is not ‘rehabilitation ready’. Pathways out of the acute setting for people who are ‘slow to recover’ are required, beyond residential aged care - Caulfield www.alfredhealthabirehab.org.au High reliance on support (often gratuitous) to achieve community living. Monitoring of people living in RAC post discharge is necessary. 40
  41. 41. Implications Timely access to equipment and support is necessary to facilitate opportunities for transition to community living. Understanding of the range of models of housing and support which may be possible, and the skills, equipment and resources required to harness these – ‘planning’ Young people in RAC may require support to register for and engage in NDIS planning. If the person does not have an advocate / ability to self-advocate, they may be very hard to find. A range of affordable, accessible housing and support options are also required. 41
  42. 42. Implications Summer Foundation Information and Connections role – at a minimum a person discharged to RAC can be linked Consumer and Family network and newsletter Collaboration with BrainLink Project coordinator roles set up in NDIS trial sites Biannual discharge planners and supported accommodation forums Vacancy monitoring of supported accommodation developed through YPIRAC initiative Housing demonstration projects and social finance think tanks 42
  43. 43. About the Summer Foundation Established in 2006, the mission of the Summer Foundation is to resolve the need for young people with disability to live in nursing homes. The Summer Foundation focuses research, creating a movement, and developing integrated housing models. 43 Questions? libby.callaway@summerfoundation.org.au
  44. 44. AIHW National Aged Care Data Clearinghouse (2014). AIHW National Aged Care Data Clearinghouse Data Request: Younger people in RAC 2012-2013. Canberra: Author. Bonyhady, B. (2013). The National Disability insurance Scheme A catalyst for large scale, affordable and accessible housing for people with disabilities. Paper presented at the National Housing Conference, Adelaide, October 2013. Hatton, C., Emerson, E., Robertson, J., Gregory, N., Kessissoglou, S., & Walsh, P. N. (2004). The Resident Choice Scale: a measure to assess opportunities for self-determination in residential settings. Journal of Intellectual Disability Research, 48(2), 103-113. doi: 10.1111/j.1365-2788.2004.00499.x Oakley, F., Kielhofner, G., Barris, R., & Reichler, R. (1986). The Role Checklist: Development and empirical assessment of reliability. The Occupational Therapy Journal of Research, 6(3), 157-170. Sloan, S., Callaway, L., Winkler, D., McKinley, K., Ziino, C., & Anson, K. (2012). Accommodation Outcomes and transitions following Community-Based Intervention for Individuals with Acquired Brain Injury. Brain Impairment, 13(1), 24-43. Sloan, S., Callaway, L., Winkler, D., McKinley, K., Ziino, C., & Anson, K. (2009). Changes in Care and Support Needs Following Community-Based Intervention for Individuals With Acquired Brain Injury. Brain Impairment, 10(3), 295-306. Sloan, S., Winkler, D., & Callaway, L. (2004). Community Integration following severe traumatic brain injury: Outcomes and best practice. Brain Impairment, 5(1), 12-29. Tate, R.L. (2011). Manual for the Care and Needs Scale (CANS). Unpublished manuscript, Rehabilitation Studies Unit, University of Sydney. Revised version 1. Willer, B, Rosenthal, M, Kreutzer, J, Gordan, W, & Rempel, R. (1993). Assessment of community integration following rehabilitation for traumatic brain injury. Journal of Head Trauma Rehabilitation, 6(2), 75-87. Winkler, D., Callaway, L., & Guthrie, S. (2013). National Disability Insurance Scheme launch sites: Projection of the number of young people in residential aged care. Melbourne, Victoria: Summer Foundation Ltd. Winkler, D., Holgate, N., Sloan, S., & Callaway, L. (2012). The Victorian Younger People in Residential Aged Care Initiative: Evaluation of quality of life outcomes for participants. Melbourne: Summer Foundation Ltd. 44 References

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