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3M Health Care Quality Team Awards
3M Health Care Quality Team Awards – Nomination Form Submit by: February 1, 2016
Contact information for administrative purposes Please indicate the category that you are applying for.
☐ Quality improvement initiative(s) within an organization
☒Quality improvement initiative(s) across a health system
Prefix: Ms. Name: Judy Bowyer Title: Senior Director, Health System Performance Management Organization: Mississauga Halton Local Health Integration Network (MH LHIN) Address: 700 Dorval Drive, Suite 500, Oakville, ON L6K 3V3 Phone: 905-337-4880 Fax: 905-337-8330 Email: [email protected] Project title: “Weaving a Mosaic of Support - Caregiver Respite in the Mississauga Halton LHIN”
Contact information for publication This will appear in the 3M Health Care Quality Team Awards booklet. If you do not wish to have contact information published, please indicate “n/a” in the applicable fields.
Please use the contact information provided in the nomination form.
Project title: “Weaving a Mosaic of Support - Caregiver Respite in the Mississauga Halton LHIN”
Prefix: Ms. Name: Judy Bowyer Title: Senior Director, Health System Performance Management Organization: Mississauga Halton Local Health Integration Network (MH LHIN) Address: 700 Dorval Drive, Suite 500, Oakville, ON L6K 3V3 Phone: 905-337-4880 Fax: 905-337-8330 Email: [email protected]
AcrossSystem10- MH LHIN
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Please list project team members, with job titles, including anyone seconded or invited onto the team from other departments/groups. Include a separate page if necessary.
Name Job Title Role as it relates to the project
1. Janice Cox Volunteer Caregiver Project Team Member (2012-ongoing)
2. Judy Bowyer Senior Director, Health System Performance, MH LHIN
Executive Sponsor and Project Designer (2009-ongoing)
3. Lisa Gammage Director, Client Services and Quality, Nucleus Independent Living
Co- Chair, Caregiver ReCharge Service Working Group & member of Caregiver Respite Collaborative. (2009-ongoing)
4. Allison Price Director, In-Home Services, Links2Care Co- Chair, Caregiver ReCharge Service Working Group (2012-ongoing)
5. Beverley John CEO, Nucleus Independent Living Co-Chair, Caregiver Respite Collaborative (2011-ongoing)
6. Sean Weylie Project Manager, Advancement of Community Practice – Respite
MH LHIN Project Lead Caregiver ReCharge (2012-2014)
7. Chris Rawn-Kane CEO, Alzheimer Society of Peel Member Caregiver ReCharge Service Working Group & Caregiver Respite Collaborative (2012-ongoing)
8. Greg Bechard Managing Director – Mississauga: Home Instead
Member Caregiver ReCharge Service Working Group (2012-ongoing)
9. Scott Johnson Managing Director – Oakville: Home Instead Member Caregiver ReCharge Service Working Group (2012-ongoing)
10. Jennifer Hill Manager, Caregiver ReCharge Service Central Intake
Member Caregiver ReCharge Service Working Group (2012-2015)
11. Jenna Leonardi Respite Advisor Lead Member Caregiver ReCharge Service Working Group (2014-ongoing)
12. Karen Heffernan Program Manager: Thrive Able Living Member Caregiver ReCharge Service Working Group (2009-ongoing)
13. Sallie Morrison Director: Thrive Able Living Member Caregiver ReCharge Service Working Group (2012-2014)
14. April Morganti Executive Director: Thrive Able Living Member Caregiver ReCharge Service Working Group (2015-ongoing)
15. Carrie Parkinson Senior Lead, Health System Performance, MH LHIN
MH LHIN Project Liaison, Caregiver ReCharge Service Working Group & Caregiver Respite Collaborative (2012-2014)
16. Kelly Baker Senior Lead, Health System Performance, MH LHIN
MH LHIN Project Liaison Caregiver ReCharge Service Working Group & Co-Chair Caregiver Respite Collaborative (2015-ongoing)
17. Raquel Bettini PhD Student, University of Waterloo Researcher Caregiver ReCharge Service (2013-2015)
18. Nancy Curtin-Telegdi
University of Waterloo Research Field Coordinator Caregiver ReCharge Service (2013-2015)
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19. Alison Howard Manager, Community Support Services, Peel Region
Member Caregiver Respite Collaborative & Day Service Task Group (2014-ongoing)
20. Angela Brewer CEO, Acclaim Health Member Caregiver Respite Collaborative (2014-ongoing)
21. Cathy Raiskums Manager of Social work and Patient Flow, Halton Health Services
Member Caregiver Respite Collaborative (2014-ongoing)
22. Donna Mackay Associate Director, Community Engagement and integration services, March of Dimes
Member Caregiver Respite Collaborative (2014-ongoing)
23. Faith Madden Manager of Placement, MH CCAC Member Caregiver Respite Collaborative (2014-ongoing)
24. Kamalesh Visavadia Director - Seniors' Services, India Rainbow Member Caregiver Respite Collaborative & Day Service Task Group (2014-ongoing)
25. Kwong Y Liu Director of Social Services, Yee Hong Member Caregiver Respite Collaborative & Day Service Task Group (2014-ongoing)
26. Sebastian Ignacio Arasanz
Director of Client Services, Oakville Senior Citizen Residence (OSCR)
Member Caregiver Respite Collaborative (2014-ongoing)
27. David Fry Vice President, Patient Care, CCAC Member Day Service Task Group (2015-ongoing)
28. Renita Wood Acting Director, Alzheimer Services, Acclaim Health
Member Day Service Task Group (2015-ongoing)
29. Vida Vaitonis Executive Director, Seniors Life Enhancement Centres
Member Day Service Task Group (2015-ongoing)
30. Wendy McBride Executive Director, S.E.N.A.C.A. Member Day Service Task Group (2015-ongoing)
31. Carol Fitzpatrick Education Lead, Regional Learning Centre Caregiver Support Resource Expert (2014-ongoing)
Completed with this nomination package: the completed nomination form, the completed nomination template - 4,029 word count – does not include
charts, graphs, pictures word count
relevant appendices – 3 pages total (not included in word count)
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Executive Summary
In 2012 the Mississauga Halton LHIN opened the new Caregiver Respite program. Five services were developed to “wrap around” the caregiver: Emergency Respite, Out-of-Home Respite (short stay), Adult Day Respite (day, evening and bathing service), In-Home Respite and Caregiver Counseling, Knowledge Exchange & Support. Caregivers can access all five services. In-home respite hours are awarded on assessed need and can be utilized by the caregiver as the caregiver chooses. The program has one access point through a centralized intake. Once admitted, Respite Advisors counsel and educate on the services available to the caregiver and coordinate entry into one or more services. A Learning Centre has been built and educators provide in-class or in-home training to caregivers in areas such as positioning, turning, feeding and changing dressings to enable caregivers to feel supported in their care. Educators also train respite provider staff in a variety of caring skills for those with dementias, Alzheimers, difficult behaviors, customer service, etc. A research study was conducted and an interRAI Caregiver Survey was piloted. Further clinical pilot testing is now taking place in other home care organizations and geographical jurisdictions, the plan being for the Caregiver Survey to become part of the inter-RAI standardized assessment system. The contribution to research and a new assessment instrument, return on investment savings and the targeted development of this much needed program, which integrates current with new services for a comprehensive approach, is strongly endorsed by the Mississauga Halton LHIN.
Bill MacLeod
CEO, Mississauga Halton LHIN
A. Issue Statement: Quality improvement initiative(s) across a health system
“Across Canada it is estimated that unpaid caregivers working specifically with older adults, save our health, social and community care systems $24-$31 billion annually.”1 From the inception of the Mississauga Halton LHIN in 2005, inherited respite services were fragmented, siloed and lacked coordination. Adult Day Services, a small in-home respite service that was unsustainable due to lack of staff, under-utilized short stay beds in LTC, Emergency respite with one provider and CCAC in-home respite consisting of a case by case judgment for extra service hours, were the respite landscape. In 2010/11 the LHIN funded a small respite pilot based on a limited cohort group’s feedback. In 2011/12 the Mississauga Halton LHIN undertook an extensive community engagement to develop the Integrated Health Services Plan (an activity of the LHINs that develops a 3 year plan for their regions), and formulated a question to ask stakeholders. We asked “How can we decrease avoidable hospitalizations and long term care demand?” We sought input from community agencies, CCAC, hospitals, and long term care resident councils as well as an extensive literature search.
1 Living Longer, Living Well: Dr. Samir K. Sinha, Provincial Lead, Ontario’s Seniors’ Strategy: December 20th, 2012, Pg. 151
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From over 150 respondents, Caregiver Support/Respite Care was the number one area identified for
need/development and became a priority initiative. From the engagement, the following foundation
was developed:
Core Belief: the Respite Program was designed for and around Caregivers who need to have support within a “network of care” Core Outcomes: access, fairness, equity, flexibility and timeliness Core Principles: (1) 3Cs: cooperation, collaboration, coordination (2) Assist to balance the load for caregivers/families (3) Engage caregivers in their own “care” – input matters – “talk to me” (4) Share your knowledge – “help me to understand” (5) Change how we conduct respite – “Make it easier for me” (6) “I am responsible for your transition through respite – how can I help you?” Core Quality: Concentrate on best solutions - best practice or benchmarking may not exist; choose innovation over the status quo; evaluate in order to “make better” Core Processes: Integrate existing services/programs into program; develop services not currently offered; one number to call; central intake for the program; program delivered across the LHIN region; program continues to build over 3-4 years; caregiver decides and chooses services from program - what is needed/when needed Core Purpose: To serve Caregivers with the highest need in a timely manner Value Statement: “Hear our needs, understand our needs, respond to our needs and provide us the
time to ReCharge”
Alignment:
Mississauga Halton LHIN’s Vision: “A seamless health system for our communities – promoting optimal health and delivering high-quality care when and where needed” Mississauga Halton LHIN’s Mission: “To lead health system integration for our communities”
Key Strategic Priorities Key Strategic Targets Ministry of Health Alignment
Accessible and Sustainable Health Care
* Develop a regionally integrated system of health care particularly for key services, through the creation of LHIN-wide regional programs
Excellent Care for All Act 2010
Enhanced Community Capacity
* Enhance health, wellness and quality of life in order to enable individuals to stay at home as long as possible with the required community supports * Provide integrated services that bring care closer to home
Ontario’s Action Plan for Health
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High Quality Person-Centered Care
* Support and foster a quality culture across the continuum of care * Value people’s experiences to support system improvement
Excellent Care for All Act 2010
Recommendations Reference
“More respite care and caregiver supports are needed to meet current and future demand”
Community Capacity Planning Study - MH & CW LHINS - 2015
Development of a “framework for a Canadian Caregiver Strategy that would include maintaining the health and well-being of caregivers, increasing the availability and flexibility of respite, minimizing the financial burden, increasing access to information and education, creating flexible workplaces, and investing in research on caregiving”
Canadian Caregiver Coalition. (2008). A framework for a Canadian caregiver strategy. Mississauga, ON: Canadian Caregiver Coalition. Retrieved from http://www.ccc-ccan.ca/media.php?mid=229
“Provide ongoing support for family caregivers and immediate relief for those in distress. Caregivers need to be formally assessed and supported as clients of home care services, and their level of stress needs to be continually monitored. Family caregivers need the system to acknowledge their critical contributions and recognize that they are burning out, provide a rapid response, and offer choices.”
Seniors in Need, Caregivers in Distress: What are the home care priorities for seniors in Canada? April 2012
In 2015 the MH & CW LHINs undertook a community capacity study to develop a plan to meet current and future community needs and to identify appropriate models of care delivery. The study validated anecdotal and experiential information about respite services in the region. The following diagram provides a summary of need for informal caregivers.
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B. Innovation in Healthcare Delivery & System Innovation In 2012 the new Caregiver Respite program opened. Transformation of siloed and fragmented services into coordinated and improved ones that “wrapped around” the caregiver (see Appendix B) and delivered integrated support in the following ways:
Emergency Respite, Out-of-Home Respite (short stay), Adult Day Respite (day, evening + bathing service), In-Home Respite (merged the old Caregiver Re-Charge Program) and Caregiver Counseling, Knowledge Exchange & Support – meant integration of existing services (Adult Day, Short Stay, Nora’s House, Re-Charge Service) into the program
One access point through centralized intake – adult day services are being transferred over from the CCAC and transportation will be attached to the Adult Day spaces - meant expansion of Central Intake from old Re-Charge Program only, into new Respite Program & services
Building new services to meet gaps in need (new Emergency and Short Stay Respite beds, Educators to train in-home/in-class, Advisors to coordinate services)
Embedding bathing services into existing Adult Day services
Enabling use of in-home respite hours to be flexibly used by the caregiver in their own time and way (day, overnight, weekend, vacation, appointments, surgery: 2 hours to 24 hours per day)
Respite Advisors counselling and educating on the services available to the caregiver and coordinate entry into one or more services – demand for in-home respite service is extraordinarily high - waitlisting is now a requirement
Caregiver applicants to the in-home respite service assessed utilizing the Washington State University Caregiver Strain Index (CSI). Care recipients for emergency, out of home, in home and adult day respite services assessed utilizing the inter-RAI Community Health Assessment (CHA) or from CCAC RAI-HC assessments. One assessment only is used – must be current within last 3-6 months
A Learning Centre built with full-time educators. Educators provide in-class or in-home training to caregivers such as positioning, turning, feeding and changing dressings - enables caregivers to feel supported in their care. Educators also train respite provider staff in a variety of skills for those with dementias, Alzheimers, difficult behaviors, etc. – funding is provided to backfill training time – enables agencies to cover more staff in training
“Branding” a program in our LHIN signifies that the program is sustainable, committed to quality and is endorsed by the LHIN. The Respite Program underwent branding in 2013.
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This branding identifies the five services (5 green steps) available upon entering “the door” to the Caregiver Respite Program. The website for the Caregiver Respite Program: http://www.mhlhinrespiteprogram.com/
The Caregiver Respite Program was awarded (September 2015) the Pinnacle Award from the Mississauga Halton LHIN. This award is given to a program that epitomizes quality in the LHIN through a number of set criteria and judged by external participants. The Pinnacle Award – Reference: http://www.mississaugahaltonlhin.on.ca/forhsps/partneringforahealthiertomorrowawards/recipientpinnacleaward.aspx) recognizes an award applicant for enabling a quality standard in program design and implementation, contributing to health system innovation, improvement, sustainability and spread and providing excellence in meeting service delivery needs of clients/patients/families. The following comment is provided by Dr. Amir Ginsberg of Trillium Health Partners, one of the judges: “This submission was outstanding in its use of quality improvement methods to their full potential, including a complete family of measures, several PDSA cycles, annotated run charts, and the meaningful involvement of caregivers to help assess impact and identify additional improvements. An economic link to cost and quality was also offered and this stood out against other award applicants. There is excellent regional/provincial alignment for sustainability and spread.”
C. Implementation When we undertook the Respite initiative in 2011/12, we didn’t have data. We had an in-depth literature review on respite needs, we had a “hodge-podge “of respite services that had been in effect for years and we had extensive community engagement input from stakeholders and caregivers. We:
brought a team together, hired a project manager with skill sets to lead the groups, developed a vision, created an integrated design for service provision, brought service providers together to share in the vision, created work groups to structure each phase of either new service development or integration
of existing services made the decision to target the in-home respite service as the primary area of in-depth focus -
this service had the most demand and needed a new model of respite delivery versus what had been provided in the past
provided targeted funding to build the program on the vision - redirected funding from within the targeted areas as we built our knowledge and data over time
built for the future with what we already had and filled in the gaps refined, measured, improved, corrected, celebrated
We developed a collaborative vision (see Appendix B) for an integrated program placing the caregiver as the primary concern for program design. This was a different focus for a respite program that usually focused on the care recipient, thereby focusing more on tasks to be completed for the individual. We needed to create a program that solely focused on care and support for the caregiver – what did they need to continue to function? We examined all 5 services proposed as part of the new program and the following represents our processes over 3 years:
3/5 were functioning and could be worked on and integrated over time in-home respite required a new approach
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caregiver counselling and knowledge exchange would be new the team made the decision to focus in-depth attention on the in-home respite service as a
primary “pillar” of the Respite Program the Adult Day Services committee was sunsetted - a new work group took its place with a
targeted focus on integration with the Respite Program, central intake moving to the Respite Program, new standards of core services, transportation incorporated into the service – targeted completion for central intake and transportation is 2016/17
a work group was formed to develop the Counselling and Knowledge Exchange service (caregivers and provider staff education) - target of 2014/15 for implementation
think tanks conducted with the team and work group members workplans developed for each work group - tracked for completion decisions were made that with the current structure and policy requirements for short-stay beds
(only in LTC), we were not able to make changes to that system - shouldn’t focus our efforts in that area – determined that we needed an additional option – open new community beds that could be provided through central intake and keep the LTC short stay beds as it currently existed – targeted for building this option in 2015/16 - target funding for same
the team agreed to a 2 year research study for the in-home respite service to gain knowledge and insight leading us to better design, verifying if we had chosen the right cohort group for in-home respite (high need/high stress/high acuity) to target limited resources, contribute to a much needed assessment instrument for caregivers (the CSI that we were using was no longer meeting our needs in the in-home respite service) and potentially develop an algorithm for caregiver distress risk – funding by the LHIN
designed the initial in-home respite service to provide 3 tiers of service level – lower to higher hours, Tier 3 being the highest hours for the highest stress and acuity needs (CSI plus Maple scores from RAI-CHA or RAI-HC); hours awarded for 1 year of use – caregivers would need to reapply to the service (high demand, limited resources)
PDSA cycles were employed with the in-home respite group. The following provides some examples:
2013/14 Plan: Allow Care Givers (CGs) the greatest flexibility/autonomy to use hours as they need Do: Implemented model wherein CGs received annual amount of hours and used monthly hours as they required Study: XX % of unused hours remaining at end of fiscal year – unrecoverable in last Quarter Act: Implemented a minimum monthly amount of hours that if not used, are lost to that CG – creates pool of funds that allows new CGs to be admitted to the service. Therefore XX more clients served annually.
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2014/15 Plan: Ensure the service is targeting the highest acuity Care Recipients (CRs) Do: Implemented requirement that CR assessments must be less than 60 days old to be considered current Study: CR assessment outcome scores (MAPLe and CHESS) not changing within 60 day timeframe Act: Implemented change to increase time period to less than 180 days old when CR assessments considered current. Reduced assessment burden on CR and CGs and increased number XX of new referrals able to be processed.
2013/14 – 2015/16 Plan: Provide respite support services to as many CGs as possible (to meet demand) Do: Implemented maximum 1 service year term to ensure flow-through of CGs through services Study: CGs showed increase levels of stress nearing the completion of their service year term thereby negating the overall impact of the service to reduce CG stress Act: 2016/17 – Implementing service model change to eliminate maximum service term and develop discharge criteria based on situational circumstances.
Elimination of Tier One Level 2015/16 Plan: Ensure that Caregiver ReCharge serves Caregivers with the highest need. Do: Explore service model changes to ensure highest need clients receive service. Study: Study hours usage and CG stress and assessment scores between Tier 1 and Tier 2 and 3 Act: Decision was made to serve (CG’s) with the highest need in a timely manner prioritizing acceptance to the services based on new combination of CSI, MAPLe and CHESS(utilizing InterRAI research finding to inform decision)Based on new criteria, low need CGs (Tier 1’s) would not meet admittance criteria therefore allowing CG’s with highest needs being met.
for the in-home respite service, we designed the service to award hours on assessed need - a Tier
1, 2 or 3 level – caregivers choose the time and amount of hours to be used – through PDSA cycles the criteria was refined through data analysis of intake statistics and our research project to identify correct targeting of caregivers. Criteria for admission was changed and volume of service hours for in-home respite were increased. In our most recent cycle and team decision-making (see
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above example) we have determined to eliminate Tier 1 (lowest hours) and eliminate the 1 year turnover – caregivers remain on service as needed
demand for the Program has increased year-over-year - the following chart identifies a snapshot of demand and funding:
By The Numbers - (April 2014 to December 2015):
Number of Service Centres Individuals Served Attendance Days LHIN Base Funding
9 1,483 81,253 $6,994,140
9 (Beds-LTC); 2 (Beds-OSCR) (LTC funded by Ministry)
20 (5 repeat users) - OSCR
200* days utilized-OSCR
$286,000 (OSCR)
8-10 (Beds-Nora’s House); 2 (Beds- OSCR) 420 5020 (24 hr) $850,000
3 Agencies 600 123,558 hours $5,003,373
1 Regional Learning Centre & 4 Educators 1233 (on-site) 168 (off-site)
110 sessions 7 sessions
$680,565
Respite Advisors 1849 (service interactions)
Included in In-Home Respite base funding
Total Funding $13,814,078
* First year of operation – not a full year
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D. Team Leadership
Role Individual(s) Responsibilities
Volunteer Caregiver Background & Skill Sets:
Caregiver extraordinaire
Direct input into the design of the respite program and services - caregiver perspective
Kept the team “honest” and focused on caregiver needs and not provider centric
Provided inspiration for the team when “bogged down” in process or what providers wanted
Executive Sponsor and Project Designer
Senior Director, Health System Performance, MH LHIN
Background & Skill Sets:
Significant project design skills
Extensive knowledge and expertise working with and in community services sector & hospitals
Healthcare Professional
Policy and procedure expertise
Committee Chair skills
Writer
Co-Designer of Award Winning Supports for Daily Living Program (3M Award Winner-2011 and Inaugural Minister’s Medal of Quality – 2012)
Designer and Executive Sponsor of Advancement of Community Practice Initiative for MH LHIN
Led community engagement initiative
Designed strategic draft vision
Provided leadership, inspiration passion for caregiver centric needs – challenged the status quo – provided Health System perspective – facilitated divergent thinking
Set expectations for each service group and steering committee activities
Provided support, encouragement, direction for the work of the groups, steering committee and MH LHIN Project Liaison and Lead
Advocated on behalf of the team at the MH LHIN and health system level – approved funding
Championed vision for the program – reinforced caregiver need driven - not where the program “should” be centred based on current practices (ie: CCAC) – fought for program’s autonomy – found ways to overcome barriers to allowing the model to function outside of the status quo of homecare business
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Co- Chair, In-Home Respite Service Operations Group - Lead Agency
Director, Client Services and Quality, Nucleus Independent Living (ReCharge -In Home Respite & Respite Central Intake)
Background & Skill Sets:
Visionary
Significant business and entrepreneurial skills
Significant project implementation skills
Extensive knowledge and expertise working in community services sector as a provider agency
Co-Designer of Award Winning Supports for Daily Living Program (3M Award Winner-2011 and Inaugural Minister’s Medal of Quality – 2012)
Led extensive operational work needed to develop implementation of the Program and associated services
Led development of the Resource Manual for the Re-Charge/In-Home Service
Led development and implementation of Central Intake for the Program
Provided leadership, inspiration, passion for caregiver centric needs
Believed in vision, supported fresh and innovative ways to implement it
Built buy-in for Program
Moved the Operations Group’s agenda forward in a timely manner
Challenged status quo, engaged the team in thinking differently about the way services were delivered – facilitated divergent thinking
Chair, Respite Program Steering Cmte; Lead Agency
CEO, Nucleus Independent Living Background & Skill Sets:
Significant knowledge and expertise working in hospital sector & community services sector
Healthcare Professional
Committee Chair skills
Consensus building and negotiation skills
Able to set the direction for her organization as a Lead agency in the program
Demonstrated passion for caregiver centric needs
Provided over sight for the completion of the Operations Group’s workplan
Provided over sight and direction to the Steering Cmte’s work plan and contributions to the design of the Program and services
Provided leadership, inspiration to the Steering Cmte.
Moved the Steering Cmte’s agenda forward in a timely manner
Solutions oriented
Believed in vision and championed its’ development to hospital and CCAC sectors
Co- Chair, In-Home Respite Service Operations Group; Lead Agency
Director, Client Services, Links2Care
Background & Skill Sets:
Knowledge and expertise working in community services sector as a provider agency
Long-time respite provider agency
Demonstrated passion for caregiver centric needs
Participated in the extensive work needed to develop the implementation of the Program and associated services
Led development of the Standards Manual for the Re-Charge/In-Home Service
Problem-solving
Project Team Members: 1. Lead Agency-
Alzheimer’s Society of Peel
CEO, Alzheimer’s Society of Peel COO, Alzheimer’s Society of Peel Manager – Re-Charge Central Intake Franchise Owner-Mississauga Managing Director Oakville
Demonstrated passion for caregiver centric needs
Participated in the extensive work needed to develop the implementation of the Program and associated services
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2. Home Instead 3. Able Living 4. Central Intake: Re-
Charge Program 5. Links2Care
Program Manager, Able Living Director, Able Living Interim CEO, Links2Care Background & Skill Sets:
Knowledge and expertise working in community services sector as a provider agency
Extensive expertise in Alzheimer’s knowledge
Able to set the direction for their organizations as a Lead or participating agency in the program
Finding solutions
A pledge to focus time and energy on caregiver need during deliberations, planning and Program development and implementation
Commitment to champion the new Program inside and outside their organizations
Clear desire to work through any doubts about the vision for the Program
Researcher and Oversight
PhD Student, Research Field Coordinator
(University of Waterloo)
Led the research and analysis of the in-home respite service under the direction of Dr. John Hirdes, University of Waterloo
MH LHIN Project Liaison
Senior Lead, Health System Performance, MH LHIN
Background & Skill Sets:
Significant knowledge and expertise working in hospital and/or community sector
Healthcare professional and/or operated own healthcare business
Intermediary between the Executive Sponsor and the Chairs of the Operations Group and the Steering Committee
Maintained a focus on quality
Problem-solving
MH LHIN Project Lead Project Manager, Advancement of Community Practice
Background & Skill Sets:
Trained facilitator: quality and process
Six Sigma Black Belt
Long Term Care Administrator
Facilitated “think tanks” for all team leadership and community feedback
Facilitated meetings of the Operations Group and Steering Committee
Ensuring workplans and details were accomplished by Operations Group and Steering Cmte. – liaised with chair and co-chairs
Worked directly with sponsor to problem-solve, provide timely information and data,
Maintained a focus on quality: focused the team on PDSA cycles and incorporating the core details agreed to under the “objectives of the Respite Program”
Set up data set and indicators for reporting by the agencies – compiled statistical reporting for review by the team – tracked improvement of team efforts
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The Team: created core purpose, beliefs, principles, outcomes, processes, quality, and value statement – stayed true
to these – “refreshed” memories when drifting away in focus/becoming provider centric utilized “divergent thinking” in group meetings – listened to each other – found humour and laughter tested our premises/design at operational level revised ideas/processes in group meetings – focused on core details - small processes and/or modifications
at a time – did not lose sight of broader vision of design while concentrating on implementation communicated disagreement and frustrations openly – called each other on those that were not
implementing processes as agreed upon – challenged those that concentrated on making things more “provider centric” – challenged those that were not “pulling their weight” in delivering service
utilized individual meetings with key team members to bounce ideas, calm doubts, clarify intent, champion “stay the course” when barriers seemed insurmountable
information from data and metrics reported monthly to the operations group and steering committee for action - operations group determined changes and action required – improvement measured – steering committee had oversight of improvement - some processes developed, others had to be built - refinement of processes ongoing from feedback, research and data – breaking down “silos” of long standing individual services and integrating services into new processes was a barrier and needs continual reinforcement of the vision
moved funding to accommodate those agencies that could provide more service and build greater capacity trusted in and called upon the knowledge/experience around the tables – utilized LHIN “authority” when
called upon by team identified core standards and operational requirements for manuals – held each other accountable –
revised these as experience and knowledge acquired over the years acquired education on PDSA cycles – incorporated processes into work – have continued these cycles –
made service improvements over the years based upon cycles utilized data to identify gaps and/or improvement opportunities – utilized minutes, drafts, frequency of
meetings and project lead to maintain communication completed business cases to identify funding requirements to meet development plans for program -
timelines for additional service additions identified and correspond to funding years.
E. Patients & Family Engagement
Two caregivers were recruited to our Steering Committee and In-Home Respite Operations Group. One volunteer caregiver remains and sits on both our committees – 4 years later. Over 150 individuals including caregivers provided feedback into what services should be included in the Respite Program. Findings reviewed with small targeted focus groups of various stakeholders and caregivers. Targeted research had caregivers completing 364 surveys on entry into one of the services in the respite program with 134 surveys repeated during the course of the pilot testing of the survey instrument. The development of the new inter-RAI Caregiver Assessment Instrument (see further in document) was refined from the analysis of caregiver responses. Caregiver feedback refined our knowledge base and became the baseline for conceptual development
of the new Caregiver Respite Program - we designed and implemented what caregivers had told us they
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needed to enable them to continue to provide care at home. Responses formed the basis for
development of the Caregiver Respite Program and included:
Provide flexible emergency time and vacation time
Increase short-time respite periods over a longer length of time
Treat the caregiver as a “provider” of care - give the support needed to get the job done – a
network of support is needed for the caregiver including Friendly Visiting
Provide the caregiver with a “coach/mentor/care partner” to enable the caregiver to learn and ask
questions involving care
Incorporate Adult Day Services into respite support for the caregiver – develop and provide different
times for these services (evening, night as well as day) – eligibility allowed for 2-3 evenings or nights
per week
Change short-term respite in Long Term Care homes – some places are “not nice”, “too much
medication is used”
Improve options and decrease institutionalization - “quality of life oriented”
The examples of caregiver comments (see Appendix C) provide further emphasis of caregiver need. Subsequently, the following design elements were built into the Respite Program to highlight caregiver and stakeholder need: enabling the use of in-home respite hours to be flexibly used by the caregiver in their own time and
way (day, overnight, weekend, vacation, appointments, surgery: 2 hours to 24 hours per day) –
caregivers do the scheduling with Central Intake
creating training opportunities for respite provider agency staff at the Regional Learning Centre –
funding provides backfill training time – enables the agencies to cover more staff in the training –
provides full training on behaviours, Alzheimer’s, dementia – incorporates Alzheimer Society of Peel
guidance in the instruction (one of the lead agencies) – conducted fully by the Regional Learning
Centre full-time educators
education provided to caregivers at the Learning Centre for turning, positioning, feeding, personal
care, etc., - caregivers can utilize their in-home respite hours to provide care to their loved one while in
training – educators can also provide in-home training if needed –scheduling is done through the full
service Regional Education Centre
centralizing all Respite Program Services under one Central Intake - one number to call for access -
Respite Advisors situated at the Central Intake - assist with entry and advice to caregivers and to any or
all services offered by the Program
expanding Adult Day Services (ADS) – now includes evenings and weekends, bathing services –
caregivers able to schedule the amount of time they need – ADS is being moved to the Respite Central
Intake from the CCAC – centralizes this service under the Respite program and enables transportation
services to be integrated
opened 2 new “community” short-term and emergency respite beds – more of “home-like” setting
offered with congregate activities - LTC short-term respite beds were decreased - greater flexibility and
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fewer restrictions allowed with community beds – can serve dual purpose when needed – all age
groups accepted
This video link provides caregiver comments on the Caregiver Respite Program:
http://www.mississaugahaltonlhin.on.ca/forhsps/partneringforahealthiertomorrowawards/recipie
ntpinnacleaward.aspx
F. Data and Metrics Data and metrics are provided for the In-Home Respite Service as the initial primary area of focus for the Respite Program. Performance measures were utilized to refine processes, improve activity and highlight issues. Indicators were defined for each performance measure as these areas initially provided the “best picture” of our implementation practices for this service. Performance and indicators were:
Access and Flow Measures: # of referrals; # of referrals meeting eligibility criteria; reason for
refusal to Program; total admissions per month; admissions by source; referrals by source; time
from referral to review of application; time from review to service delivery; #of discharges per
month; #of discharges by disposition; time of referral to transfer to service provider
Utilization Measures: Distribution of services used by Caregiver; average hours used by Tier
Impact Measures: % decrease in Caregiver Stress Index
The following charts are 2 examples of measurement taken, improvement areas identified and subsequent response in improvement (as at 2012/2013 – first year). The above measures and indicators were useful in the first year and were refined in year 2 as uptake of processes were embedded and further information needed to be collected. We have since moved to a monthly “Caregiver Respite Program Statistical Report” developed by the team and now residing with the LHIN’s Decision Support department for inclusion in the LHIN’s Performance Scorecard system.
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The following charts provide data on the statistical information that is collected as part of the in-Home Respite Service and utilized by the team for review – the LHIN utilizes the data to inform on stats for the program. We use the data to: see demand for service over time understand characteristics of both the Caregivers and Care Recipients review noted changes (eg: we’ve seen a noted change in the RAI and Chess Scores), see discharge destination to understand where caregivers/recipients are going see service utilization of hours per month see turnover accountability for funding utilization question the reasons, action changes where needed, monitor results of action taken
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218197 197 186 188
215 234270 279 287
327285 268 272
62 61 59 61 55 51 53
550 537 543574
528 534559
APR MAY JUN JUL AUG SEP OCT
FIG.1 Distribution of Caregivers Served by Tier Level, and Month, MH LHIN, FY 15/16 YTD October
Tier 1 (168 annual) Tier 2 (267 annual)
Tier 3 (365 annual) Total # Caregivers
0%
20%
40%
60%
80%
100%
120%
140%
160%
180%
Apr May Jun Jul Aug Sep Oct YTD Oct's
PER
CEN
TAG
E
FIG.3 Admission Rate as a Proportion of Referrals Received from CR, by Tier Level, MH LHIN, FY 15/16 YTD October
Tier 1 Admit Rate Tier 2 Admit Rate Tier 3 Admit Rate
0.0
50.0
100.0
150.0
200.0
250.0
300.0
350.0
400.0
Apr May Jun Jul Aug Sep Oct YTD
AV
ER
AG
E D
AYS
FIG.6 Length of Service by Service Provider Agency, and by Month, FY 15/16 YTD October
Nucleus Ind. Living ASP Links2Care MH LHIN
113.%
125.%
0.0%
20.0%
40.0%
60.0%
80.0%
100.0%
120.0%
140.0%
0
20
40
60
80
100
120
Apr May Jun Jul Aug Sep Oct
Pe
rce
nta
ge
Co
un
t
FIG. 7 Discharged Caregivers as a Proportion of New Admitted, MH LHIN, FY 15/16
Total # of New Admits # of Discharged Clients % of Discharged Clients
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(See PDSA examples for information use and changes made to the service as a result of data utilization)
G. Analysis By utilizing a combination of community engagement information for the Respite Program in entirety and research data specific to In-Home Respite service, we have developed services that effectively address feedback from caregivers and meet the MH LHIN’s key strategic targets and priorities. As we move into our next IHSP release (2016 to 2019), our success with the Caregiver Respite Program has moved this initiative to a prominent priority position in our LHIN’s overall strategy. See: http://www.mississaugahaltonlhin.on.ca/goalsandachievements and click on IHSP from the dropdown menu. Research data has confirmed areas of known data on caregivers as well as indications for focused attention on education for caregivers and provider staff (high proportion of cognitive impairment/Alzheimers on service); further service programming (eg: depression, isolation); attention paid to caregiver reports of pain.
0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
AP R M AY J U N J U L AU G S E P O C T
F I G . 8 D I S TR I B UTI ON O F D I S C H AR G ES B Y R EAS O N
% as a Result of Care Recipient Changes % as a Result of CRP Hours Completed
18-447%
45-5418%
55-6434%
65-7420%
75-8415%
85+6%
FIG.9 Distribution of Caregivers by Age
10.5044247811.29166667
10.6666666710.7777777810.233333339.72222222210.6122449
0 0 0 0 0Apr May Jun Jul Aug Sep Oct Nov Dec Jan Feb Mar
F I G . 1 0 AV E R AG E AD M I S S I O N C S I S C O R E F O R C AR E G I V E R S ,M H L H I N , F Y 1 5 / 1 6 Y T D O C T O B E R
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Areas of Respite Service Evaluated Comparisons Utilized Primary Data Sources appropriateness of the eligibility criteria;
changes in the quality of life of caregivers;
changes in the health measures of the care recipient; and
potential delay or avoidance of admission to long-term care (LTC) and its implications related to return of investment
A MH CCAC dataset, held at the University of Waterloo, was used in the data analysis for comparing the health outcome measures of the program participants with similar cohorts receiving services from the MH CCAC. Statistical methods involved frequency analysis, logistic and survival models
caregiver and care recipient assessments at admission, and
follow-up at least 6 months later as well as their discharge information
Results most caregivers are over the age
of 65 female and spouses do not have paid employment
those younger than 65 years of age
female, child do have paid employment
1/3 of caregivers make trade-offs for purchasing basics (food, shelter, clothing or medications)
caregivers not speaking English have more financial issues
50% of caregivers acknowledged feeling anxious or overwhelmed by their loved ones illness
more than 60% of caregiver’s loved ones had a diagnosis of dementia (proportionally higher than CCAC clients with the same diagnosis)
understanding the main causes of informal caregiver distress that are related to care recipient characteristics is essential for developing strategies to minimize caregiver burden
changes were observed in the quality of life and support indicator items in the study
a higher proportion of caregivers experienced improvement rather than a decline after being on the service for at least 6 months
results showed that care recipients in the program presented with improvements in health status as reflected in changes in their Method of Assigning Priority Levels (MAPLe) and Changes in Health, End-Stage Disease and Signs and Symptoms (CHESS) scale scores (MAPLe is considered a predictor of caregiver distress and admission to LTC and CHESS is associated with medical complexity and health instability)
a diagnosis of dementia is the strongest predictor of LTC admission where those with dementia were 3.5 times more likely to be institutionalized
the second predictor, help with Instrumental Activities of Daily Living (IADL) indicated that care recipients who did not have a second informal helper for IADL assistance were 3 times more likely to be admitted to LTC
the MAPLe score was a significant predictor of LTC admission. Care recipients with MAPLe 5 score were 2.4 times more likely to be admitted to LTC than care recipients with a MAPLe 4 score
the CR program saved approximately $860,000 health care dollars in one fiscal year as a result of the number of days of LTC admissions that were avoided
the study evaluation reinforced that the MAPLe score is effective for targeting distressed caregivers of care recipients that are more likely to be institutionalized
the study also provided evidence that the program can have a role in improving the lives of informal caregivers and their care recipients
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As part of the ongoing development of the In-Home Respite Service (Caregiver Re-Charge), an interRAI Caregiver Survey was piloted as part of a 2 year research study.
Caregivers completed 364 surveys on entry into the in-home respite service with 134 surveys repeated during the course of the pilot testing. The information obtained from piloting the survey with caregivers was utilized to revise the initial pilot document.
Final revisions were made and the pilot Caregiver Survey was presented at the interRAI Instrument and Systems Development Committee (ISD). This interRAI committee focuses on the development of instruments and their applications in over 30 countries around the world
Further clinical pilot testing is now taking place in other home care organizations and
geographical jurisdictions – we are presenting this work at the first World inter-RAI Conference
to be held in Toronto in April 2016. The value this assessment instrument will bring includes
development of a potential caregiver distress risk algorithm; an opportunity for the caregiver to
self-report about Quality of Life and supports; identify issues such as financial hardship and
health and emotional concerns that can then be addressed and can inform the need for
caregiver support resulting in the development of respite programs in countries around the
world.
In the last year (2015):
have provided information on our Respite Program as a whole and our In-Home Respite Service (Re-Charge) specifically, to a variety of LHINs across the province
have shared in-depth information with one of our nearest LHINs (Hamilton) as they begin the process of developing a Respite Program
have had inquiries from Nurses in Respite Programs in BC asking about how we operationalize some functions and what we are doing with the concept of providing caregivers with hours they (caregivers) determine how to use
Ministry of Health and LTC in Ontario has reached out to us to ask questions on the Program to understand our costs, number of people in our Program (all services), how we came to develop the Program around caregiver feedback, how we are incorporating various services into an overall Respite concept, etc.
With completion of the MH and Central West LHIN’s joint Community Capacity study in 2015, respite services were identified as a primary focus area the LHINs both now and into the future as demand will exceed supply by 700,000 hours. The study articulated: “Strategies are needed to support paid care and increase supply of informal care.” Study results were provided to the Ministry of Health and Long Term Care with a presentation to them on February 6th, 2015 regarding our Respite Program initiative and what we are trying to achieve.
Caregiver satisfaction is extremely high (see Appendix A). Constant feedback obtained from caregivers has resulted in changes to the in-home respite service – we are in the transition from reapplying for service after one year to caregivers now remaining on the in-home service as long as needed. Our work, research and continued learnings in the in-home respite are helping to inform other services in the respite program and design revision is now an accepted norm of the team as we work through the details of other service areas. We are ready to share our learnings – our ultimate goal is to see a National Respite Program in Canada to strengthen and sustain for long term gain.
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A 74 year old woman caring for her husband: “I do not feel that my husband would be better
off elsewhere. If I did not have the Respite Program, I would not be able to cope with my husband’s illness.”
An 81 year old woman caring for her husband: “I would always recommend the respite program to others as I would not be able to look after my husband without it.”
A 67 year old woman caring for her husband: “I would always recommend the respite program to others – I came back from Toronto yesterday after visiting my grandchildren for 12 hours! I could not believe it! I am sure other people using the program will be able to experience freedom again as I did.”
An 88 year old woman caring for her husband: “I could not do it without the program. Having someone here from the program takes a load off my shoulders. I am more relaxed now. The program has been a life saver for me.”
I became aware of the Caregiver Re-Charge Program through the Alzheimer Society of
Peel in 2014. My husband was diagnosed with Alzheimer’s disease in 2011. I called
immediately and within a few days a counsellor from the program came for the initial
interview. That same day I was advised that we qualified for 169 hours per year. Our
provider was Home Instead. At this stage in my husband’s disease, I was looking for
companionship for him, which in turn gave me a much needed break! I was his primary
caregiver. During the course of the year, we had 3 support workers, the last one with us
for the last 6 months of the program. She was very caring and enjoyed the time with my
husband. They would take walks, play checkers (which at this stage of his disease) he
was still able to do. She would encourage him to talk about his past. They developed a
great relationship and he would ask every day when she was coming back. It warmed my
heart to see him so engaged with someone other than me! I really believe that this one on
one time for him, contributed to slowing his decline. Throughout this year, I found the
staff, both at the Re-Charge Program and Home Instead to be support of us as a couple
and me as the caregiver.
This program is so needed! It allows the family to choose whatever support they need,
rather than just the physical support offered by CCAC. My only disappointment was
finding out that at the end of my year, I lost access to the program! I would have to re-
apply and go on a waiting list. This should not be a temporary program. Alzheimer’s
disease is not temporary. I understand the growing need for support like this and the
limited funding. My husband is now in Long Term Care, but I know that I was able to
keep him home longer because of this program. Isn’t that the government’s goal?
Dr. John Hirdes Quote: “The Caregiver ReCharge Service is an outstanding initiative that has been improving not only the lives of informal caregivers but also the lives of their care recipients. As a result, these individuals have been able to live longer and better in their homes [while] saving costs for the health care system.”
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Examples of Comments from Caregivers as Part of the Community Engagement: “I would have just liked to sleep for a little while each week – I wasn’t asking for every day, just a
couple of days.” “I see providers being afraid when they come to my home to provide care. They are not trained in
dementia, Alzheimer’s and difficult behaviors and they can’t handle it. They need training on how to talk to people/clients and how to use specific techniques for those who have behavioural issues. If they knew how to use these techniques, they would be more confident. I feel Adult Day Service personnel know how to do this.”
“Make it a normal thing for caregivers/families to ask for help – that it is expected of them to do so and is as normal as breathing. It shouldn’t be a cause for embarrassment, doubt or a lack of confidence, but healthcare people need to help us feel this way.”
“Can we not get something in writing for information? – we are not healthcare people.” “I really don’t want to make a lot of calls – can I not get just one number to call.” “Hours of care need to more appropriately meet my needs as a caregiver. I want to choose the
time, not the provider. I don’t have a lot of time to spend re-training every time a provider comes to my home.”
