Libby Callaway - Summer Foundation Occupational Therapy Dept Monash University - Pathways &...
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Transcript of Libby Callaway - Summer Foundation Occupational Therapy Dept Monash University - Pathways &...
The pathways from acute care and housing outcomes of young people with ABI at risk of placement in aged care
Libby Callaway1,2
1 Summer Foundation Ltd, Box Hill, Australia 2 Monash University, Frankston, Australia
Collaborators
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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 participation
Current housing and support models that people access following ABI
Accommodation transitions and outcomes of people with severe ABI
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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)
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5
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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
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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
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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 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
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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
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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.
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Results
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Results
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* *
* *
Results
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*
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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
Accum
ulated
CIQ Sub
bscale Sccors
Community Integra7on Ques7onnaire stacked subscales for pre-‐ABI and 12mths post-‐ABI
Home Integra?on Social Integra?on Produc?ve Ac?vi?es
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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
Accum
ulated
CIQ Sub
bscale Sccors
Community Integra7on Ques7onnaire stacked subscales for pre-‐ABI and 12mths post-‐ABI
Home Integra?on Social Integra?on Produc?ve Ac?vi?es
**
**
* *
*
Results
Support
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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
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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)
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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
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Living situation – pre-injury
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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%)
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) 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
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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)
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Living situation – intervention period
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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%)
Living situation – intervention period
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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%)
Living situation – intervention period
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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%)
Living situation – intervention period
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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%)
Characteristics of participants who transitioned
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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
Housing and support settings
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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
Housing and support transitions
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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)
Factors critical to transition
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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%
Factors critical to transition
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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%
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
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
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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?
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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?
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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
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The Housing Toolkit !
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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.
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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.
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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
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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.
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Questions?
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.
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References