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

The pathways from acute care and housing outcomes of young people with ABI at risk of placement in aged care

Libby Callaway1,2

[email protected]

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



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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*

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

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

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**

* *

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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

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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%)


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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%)



Cluster unit 0 1 (2.3%) 1 (2.3%) 1 (2.3%)

RAC 4 (9.3%) 2 (4.7%) 2 (4.7%) 3 (7%)



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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%)



Cluster unit 0 1 (2.3%) 1 (2.3%) 1 (2.3%)

RAC 4 (9.3%) 2 (4.7%) 2 (4.7%) 3 (7%)



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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%)



Cluster unit 0 1 (2.3%) 1 (2.3%) 1 (2.3%)

RAC 4 (9.3%) 2 (4.7%) 2 (4.7%) 3 (7%)


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)


G Living with others in separate area

Home alone with support (rental)



H Home alone with support (rental)

Home alone with support (rental)



I Home with family

Home with family Home with partner and / or children

Home with partner and / or children

J Home with family




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


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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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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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?

[email protected]

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

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

Health & Medicine

abi homeintegra

severe abi outcomes

sloan callaway

outcomes of people

acute care

characteristics winkler

current rac winkler

rac admission winkler