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On a Roll
and on the right track
The Alberta
Spinal Cord Injury
Action Strategy
Working Draft
(version 2)
March 19, 2010
Table of Contents
Status of This Draft
This Working Draft is a revision based on feedback Page
from the Stakeholder Forum in early March. The
content was initially based on key informant Context and Acknowledgements 1
interviews, a literature review, a DELPHI panel and a
great deal of discussion among the consultants and Part 1: Overview of the Action Strategy
the staff Secretariat of the Alberta SCI Solutions
Alliance. Reflection 2
Purpose and Process 3
Although input has been received from members of Situation Analysis 4
the Alberta SCI Solutions Alliance, this draft has not Principles 5
been formally approved by that body. Vision and Visionary Outcomes 6
Moving Forward – Goals and Strategies 7
We anticipate making significant changes and
enhancements between now and October 2010,
based on: Part 2: The Priority Unmet Needs
Initial review by the Alberta SCI Solutions
Alliance in the last week of March The Top Eight 11
Affordable, Accessible Housing 13
The work of Task Teams to be assigned to each Attendant Care/Home Care 14
Priority Unmet Need Adaptive Equipment/Supplies 15
Work on implementation (governance,
partnerships, resource requirements)
Appendices
On-going policy and planning work by the staff
Secretariat and consultant team. Leadership Teams 17
Wide distribution for stakeholder feedback in Terminology 20
October Principles used in related policies/plans 22
Elaboration/Explanation of Visionary outcomes 24
Please pass any comments or suggestions on to Unmet Needs – DELPHI results 30
Heather Lissel, Project Coordinator
at CPA (Alberta) - heather.lissel@cpa-ab.org
Context and Acknowledgements
On a Roll, the Alberta SCI Action Strategy, has been created as part of The Alberta SCI Initiative. In
2007, the Government of Alberta contributed $12 million to support this five-year Initiative.
Management of this investment is shared among the Rick Hansen Foundation (RHF), the Rick
Hansen Institute (RHI) and the Alberta Paraplegic Foundation (The APF). Two committees have
been established by The APF to advise the Initiative: the Alberta SCI Solutions Alliance and the
Alberta SCI Research Team. The Canadian Paraplegic Association (Alberta) provides secretariat
support for The APF and the two committees. Appendix 1 recognizes these leadership teams.
The Alberta SCI Initiative focuses on four related goals:
Create Solutions That Work – create and implement solutions that respond to the
priority needs of people with SCI and related disabilities in Alberta;
Pursue Research Innovation – leverage research excellence in Alberta by sharing
resources and building national linkages to accelerate translation of new knowledge into
best practices;
Engage Communities in Finding Solutions – build understanding of and investment in
the needs of persons with SCI in Alberta and the Canadian commitment to full citizenship
for persons with disabilities;
Create and Support Effective Leadership – apply RHF leadership expertise and
coordination experience to Alberta Solutions and related processes.
The Alberta SCI Strategy will inform decisions taken in the final two and a half years of the Initiative
(2010/2012) and provide the foundation for ongoing collaboration within the SCI Community.
The Alberta Leadership Teams and the Rick Hansen Foundation gratefully acknowledge the
Government of Alberta and the departments of Health and Wellness, Seniors and Community
Supports, and Culture and Community Spirit for their support of both the Initiative and development
of the Alberta SCI Action Strategy, On a Roll.
1
Reflection
In Unison 2000: Persons with Disabilities in
Canada – the report of the Federal, Provincial and
Territorial Ministers responsible for Social Services,
setting the stage for a multi-sector commitment to
inclusion, welcoming all to participate fully in society
The Alberta Disability Strategy – the 2002
More than 4,000 Albertans live with a spinal cord injury. Another
foundation for full citizenship for Albertans who have a
140 traumatic spinal cord injuries occur each year in our province.
disability; fair treatment, adequate supports,
The past decade (2001-2010) has witnessed several significant opportunities to pursue education and employment,
efforts to plan for improved status and inclusion of persons with choice and the ability to participate in all aspects of
disabilities in Alberta and Canada. Excellent plans, strong policy Alberta society
recommendations and outstanding pilot projects have all held the
The Alberta Spinal Cord Injury Collaboration
promise of progress. And yet, regular surveys to identify priority
Initiative – reports in 2003 and 2005 to build and act
unmet needs of Albertans with spinal cord injury continue to draw
on the Alberta Disability Strategy vision through
attention to the same areas and themes. We have yet to
collaborative action to address the needs of Albertans
generate the treatment, care and support breakthroughs at the
living with a spinal cord injury
front line that fundamentally and sustainably improve quality of life.
Going Forward Together – the 2007 commitment of
There’s been so much talk and so much written over the years
Alberta’s SCI Community and Provincial Government
about what needs to be done. We approach On a Roll with
to reduce disability and improve quality of life for
optimism and a commitment to somehow break through this
Albertans with spinal cord injury.
constant reiteration of basic concepts to produce results – to
generate action that will really make a difference. We can take an Principles and concepts from these foundation documents are
old policy or idea and make it live, perhaps for the first time; we
now common in Alberta public policy (appendix 3). On a Roll
can take a pilot that proved itself but was
is both a call to
never replicated, and make it a best
action and a
practice that we all endorse and act on;
commitment to
and we still have the potential to create
produce. It once
something new that will improve the Going again defines the
status, wellbeing and quality of life of Forward ‘right track’ towards
Albertans with SCI. Together
Alberta SCI improving outcomes
Our approach will be to focus on those Collaboration for Albertans with
goals and strategies that have already Initiative SCI, towards
Alberta
been endorsed by the SCI Community Disability ensuring that our
AND that are well supported by current Strategy collective efforts
Alberta policies and plans. We will build In Unison deliver the best
on four key policy/planning foundations: possible results.
2
Purpose and Process
The process was/is relatively straightforward:
The Alberta SCI Action Strategy has been crafted with four goals
or purposes in mind: Key informant interviews were held with stakeholder leaders
representing the SCI continuum, ranging from funder to
To provide a conceptual and planning framework for ultimate consumer.
collaborative effort in the SCI Community A directed literature review was conducted for the Strategy by
To identify priorities, develop action plans and launch staff of the Alberta Disability Forum – with results analyzed by
related initiatives, all intended to significantly improve project staff and consultants.
health and quality of life outcomes for Albertans with A content analysis of all related policy/planning documents
SCI was conducted to identify complementary vision, principle,
To position this work on the agendas of the communities outcome, and strategy elements.
and governments that must ultimately support A DELPHI study was conducted to determine priority unmet
implementation needs of Albertans with SCI.
To give the SCI community one voice and a shared Basic elements of a proposed Alberta SCI Action Strategy
purpose reviewed, discussed and debated at a major Stakeholders
Forum.
On a Roll will define a common vision and guiding principles to
direct our work together. It will identify two sets of strategic Task Teams will be assigned to each
priorities for the SCI Community: priorities for systemic priority unmet need - to develop and
improvements in the continuum of treatment, care and support; launch action plans.
and more specific or focused priorities to address unmet needs Development of an overall
that require immediate attention. Implementation Plan, including
resourcing approaches.
For each priority identified, we will develop goals and high level
strategies, and recommend first steps or actions to get us rolling Drafts of On a Roll will be published
forward together on the right track. from time to time to encourage
discussion and feedback.
We will also define the leadership model that will both guide and
support future action.
3
Situation Analysis
required to influence the many governance and executive bodies
involved was a barrier in itself. We are now in a position where a
sound, evidence-based presentation can lead to adoption of a
consistent best-practice throughout the province. We are more
than prepared to partner with public sector policy makers and
planners to achieve common outcomes.
Our opportunity to move forward aggressively has never been
better. The SCI Community has learned to work together and
demonstrates this commitment on a daily basis. Provincial
Translational Research
policies that affect us are being developed and coordinated Canada’s governments have come together to support practice
centrally, opening the doors to systemic improvement in all parts based research designed to improve SCI outcomes. Through
of Alberta. Researchers and service providers have collaborated RHF/RHI, the information is now flowing to service providers and
to generate consensus on many elements of evidence-based best consumers. The publication of SCI Rehabilitation Evidence
practice. Cost drivers have risen to the point where all agree that (SCIRE) exemplifies the growing interest in research findings.
new ways of doing business must be found. And there is a new We have never been in a stronger position to develop evidence-
appreciation for the importance of leveraging the contributions of based policies, plans and interventions.
the consumer, the family caregiver and professionals in a
community setting. Thirst for New Ways of Doing Business
The rate of increase in public sector expenditures on health and
Commitment to Collaboration
social services is simply not sustainable. Governments and their
The Alberta SCI Collaboration Initiative (2003 – 2005) was but the arms-length partners are more open than ever to considering
beginning. The provincial SCI Community pulled together again options that will maintain or improve outcomes while reducing
in support of ‘Going Forward Together’ in 2007. Since that time, costs in the short and/or long term. Particular attention is being
we have established an ongoing Alberta SCI Solutions Alliance focused on systemic efficiency, appropriate/timely care,
and the Alberta SCI Research Team both to advise on and direct integrated service, balanced centralized/specialty and community
The Alberta SCI Initiative and to support collaborative efforts based support, prevention of secondary complications, and
beyond 2012. Within the Alberta SCI Initiative, active living shared responsibility. On a Roll will identify new behaviours or
stakeholders have come together to plan, develop and manage change with a high return on investment.
their own dedicated grant program. And new partnerships have
been forged between Alberta and RHF/RHI around Wheels In New Appreciation for Leveraging and Partnerships
Motion, the peer and Ambassador programs, and translational
Experience with the Chronic Care Model has demonstrated the
research. On a Roll will continue the momentum.
value of partnerships engaging professionals/clinicians,
community resources, the family and the consumer – towards
Province-Wide Policy Development and Planning
improved outcomes. The SCI Community is prepared to
Our relatively small community is spread throughout the province. demonstrate the benefits of productive interactions between
In the era of regionalism, we experienced great inconsistency in prepared, proactive practice teams and informed, activated
policy and service from one part of Alberta to another. The effort consumers. It’s time to act on principles that are widely accepted.
4
Inclusion – the Right to Participate
We recognize persons with disabilities as full and contributing
Principles citizens of Alberta – living with respect and dignity, with equal
rights and responsibilities. Alberta communities must be fully
accessible and welcoming; free of physical, attitudinal and
systemic barriers.
On a Roll is a collaborative effort. As such, it is imperative to Consumer Engagement
respect the values, beliefs and principles of key partner and Albertans with SCI will be included whenever policies or practices
stakeholder organizations. The good news is the challenge of that affect their quality of life, supports, or status as citizens are
assembling an overall set of principles being considered. They will hold shared responsibility and a
respected by all participants is relatively easy. determining voice in the design and delivery of programs and
Appendix 3 summarizes the principles put services that they require. Albertans with SCI are responsible,
forward in the plans and policies of related within their individual capabilities, for their own lives and their
organizations and government agencies. obligations as citizens.
We are all saying the same thing, albeit in Independence, Information and Choice
slightly different words. Albertans with SCI have the right to optimal independence and
self-reliance; to be fully informed about issues that affect them
The principles that will guide the Alberta SCI and their family; to informed choice; and to hold the determining
Strategy were derived from this consensus. voice in the design and delivery of the programs and services
Particular weight was placed on the values and they require.
principles endorsed by the Canadian Paraplegic
Association, the 2003 SCI Collaboration Empowerment and Access to Supports
Initiative, the Alberta Disability Forum, and the Albertans with SCI require the means to maximize their
Alberta Premier’s Council on the Status of independence, participate fully in their community, and enhance
Persons with Disabilities. There is no priority their well-being. It is a wise social investment to provide the
order intent. adaptive equipment, socio-psychological adjustment support,
attendant/caregiver support, mobility support and education
All of the principles are based on the ‘social required to create a ‘level playing field’ of equal opportunity.
model of disability’ which views disability as a
consequence of environmental, social and Collaboration and Partnerships
attitudinal barriers that prevent people with impairments from The continuum of treatment, care and support required from
maximum participation in society. This approach sees people moment of injury throughout life with a spinal cord injury involves
with disabilities as consumers of what society has to offer – many institutions, organizations, communities and individuals.
leading to choice, empowerment, equality and integration. It Transition along the continuum must be seamless; coordinated
largely rejects the view that people with disabilities are dependent planning and resource sharing among agencies must be a given;
on society – a view that often results in paternalism, segregation we must avoid duplication and competition between providers at
and discrimination. all costs.
5
Vision Our process involved a review of 30 relevant, related policies,
plans and strategies – together providing context for the Alberta
SCI Strategy. The vision elements selected for On a Roll are
reflected in ALL four of the foundation documents listed on page 2.
We have chosen to present a short vision accompanied by related visionary outcomes. In many cases, the visionary outcomes are simply
more specific iterations of our principles. We want the principles to become our reality.
Visionary Outcomes
Alberta is an inclusive and barrier free society. Albertans with SCI and
other disabilities live in fully accessible and welcoming communities,
free of physical, attitudinal and systemic barriers.
Albertans with SCI have the support they require to
A Common Vision achieve optimal independence and their full potential as
contributing citizens in their community of choice.
Albertans with SCI are valued as
equal citizens; fully participating
in the social, economic and
political life of their communities.
Service providers at all points on the SCI continuum of
treatment, care and support adopt evidence-based best
practices; and collaborative approaches that optimize
outcomes for individuals, avoid duplication, and
improve systemic efficiency.
Each Albertan with SCI has the opportunity to participate in the development
of customized responses to priority unmet needs – solutions that meet
evolving, self-identified requirements to pursue the rights, obligations and
benefits of citizenship in their journey through life.
6
This section provides a high level overview of what we intend to do
Moving Forward
to achieve our vision and the four visionary outcomes. Additional
detail can be found in Part 2 (page 11). Our approach balances
our obligation to assist with systemic improvement that will have
longer-term benefit – while addressing the urgent, priority unmet
needs of Albertans with SCI in the short term. In all cases, we rely
on partnerships and collaborative effort to leverage the unique contributions of government, institutions, community organizations,
researchers and consumers. The approach also anticipates continuing and new investments in Alberta’s SCI community and field – taking
advantage of our relatively small size to pilot enhancements that will ultimately benefit all disability, health and social support services.
The table below summarizes four visionary outcomes, eight related goals and 24 implementation strategies. While the list may appear
overwhelming at first glance, we will be relying on many committed organizations and individuals to help us move forward. Moreover, many
of the strategies are already in place and simply need additional support. After each strategy, please see the following codes:
C/O – current and ongoing commitment of a key partner organization (e.g. Premier’s Council, ADF, CPA)
SCII – currently underway, funded through the Alberta SCI Initiative ($12 million Government of Alberta investment)
CI – initiative of the Alberta SCI Collaboration Initiative, needs to be rebooted
N – new, requiring start up effort
Visionary Outcome Related Goals Strategies – the specifics of moving forward
Inclusive, Barrier Goal 1: Help Albertans Support efforts by the Premier’s Council and the Alberta Disabilities Forum educate
Free Communities focus on ability rather about, advocate for, and promote the value of Albertans with Disabilities (C/O))
than disability and Work with the Rick Hansen Institute in support of our joint commitment to engage
Alberta is an inclusive create a culture of communities, build awareness, promote inclusion, and showcase success - e.g. Wheels
and barrier free society. respect and dignity for In Motion, Ambassador/Peer presentations, School Programs. (SCII)
Albertans with SCI and people with disabilities.
other disabilities live in
fully accessible and
welcoming communities, Goal 2: Help Alberta Support efforts by the Alberta Barrier Free Council and the Premier’s Council to promote
implement best the concept of Universal Design and to encourage all Alberta Ministries to model related
free of physical,
practices in barrier free, behaviours (C/O)
attitudinal and systemic
barriers. universal access Develop best practice guidelines for Visitability and Universal Design (SCII)
Spearhead an advocacy initiative to make Alberta communities fully accessible, building
on the work of CPA Community Development Coordinators (CI, C/O)
7
Visionary Outcome Related Goals Strategies – the specifics of moving forward
Empowerment and Goal 3: Strengthen the Strengthen education and information services that help Albertans with SCI access
Access to Supports consumer’s capacity to appropriate services and make responsible choices (N)
choose Offer ‘self advocacy’ training through the CPA Peer Program (N)
Albertans with SCI have
the support they require Build SCI modules and support systems into Alberta’s evolving approach to chronic care,
to achieve optimal continuing care and community supports (N)
independence and their Work towards expansion and broader application of the ‘self managed care approach’ for
full potential as Albertans with SCI – health, attendant care, disability supports, housing, etc. (C/O, N)
contributing citizens.
Build capacity to provide counselling/service coordination support in all parts of Alberta -
leverage community resources to improve outcomes for Albertans with SCI (C/O)
Goal 4: Facilitate
access to services in Position CPA Community Development Coordinators to help providers of mainstream
‘community of choice’ services better understand how to improve accessibility for Albertans with SCI (N)
Work with government to develop an all-Alberta approach to ensure universal and timely
access to customized personal and technical supports for Albertans with SCI – based on
the Premier’s Council Community Supports Model (C/O, N)
Goal 5: Promote Link all Alberta SCI providers to SCIRE (SCI Rehabilitation Evidence) and RHI to
Evidence-based, identification and position Alberta as an early adopter of evidence based best practices (C/O)
Coordinated Services adoption of best Work with Alberta Health Services and the Ministry of Seniors and Community
practices Supports to establish mechanisms for province-wide endorsement of evidence-
Service providers at all
points on the SCI based best practices for services to Albertans with SCI, including compliance
continuum of treatment, mechanisms (N)
care and support adopt Develop and support Solutions Teams strategically positioned to serve all
Goal 6: Facilitate cross-
evidence-based best Albertans with SCI (SCII)
continuum collaboration
practices; and
and efficiency Position navigators to help all newly injured Albertans with SCI understand and
collaborative approaches
access optimal treatment, care and support (SCII)
that optimize outcomes
for individuals, avoid Re-launch the SCI Community Transitions Strategy from the 2003-2005 SCI
duplication and improve Collaboration Initiative (CI)
systemic efficiency. Goal 7: Strengthen SCI Active engagement of Alberta SCI researchers in the RHI Translational Research
translational research Program, including efforts to attract and leverage Alberta funding (SCII)
See graphic on page 28 activity in Alberta
for a description of the SCI (acute, active rehab, Encourage Alberta SCI researchers and practitioners to focus on and inform
continuum community integration) practices related to the visionary outcomes and goals of On a Roll. (N)
8
Visionary Outcome Related Goals Strategies – the specifics of moving forward
Response to Priority Goal 8: Facilitate Position the Solutions Teams and navigators (Goal 6) with responsibility for
Unmet Needs immediate, participatory helping those with critical unmet needs develop and/or access customized
responses to the priority solutions (SCII)
Every Albertan with SCI unmet needs of
has the opportunity to Maintain a Solutions Fund to provide immediate assistance to individuals who
Albertans with SCI
participate in the cannot access support for their own priority unmet needs (SCII)
development of Utilize a multi-perspective Task Team approach to address 3-5 priority unmet
customized responses to needs every three years – critical issues facing large numbers of Albertans with
priority unmet needs – SCI. See diagram on next page for overview of current issues identified. (N)
solutions that meet
evolving, self-identified Facilitate consumer engagement in any and all processes related to the
requirements to pursue development and/or delivery of services that Albertans with SCI require (C/O)
the rights, obligations Identify and advocate for best practices related to consumer empowerment in the
and benefits of health, social service and disability fields (N).
citizenship in their
journey through life.
9
On a Roll – 2010 to 2012
In the first three years of the Alberta SCI Action Strategy, we will focus our attention on the four visionary outcomes, related goals and
strategies outlined above – for the most part relating to ongoing systemic change and requiring patience. The bottom right quadrant in the
graphic below addresses our more immediate response to priority or urgent unmet needs. Here we will be less patient, looking for
breakthroughs with high short-term pay-off.
Two such needs emerged as priorities in earlier planning processes and have been partially funded through the $12 million Alberta SCI
Initiative: Active Living and Peer Support. The Alberta SCI Solutions Alliance has been providing direction to new initiatives in each area
over the past two years, supported by more specialized advisory teams. As part of the ‘On a Roll Process’, we conducted key informant
interviews followed by DELPHI research to reach consensus on three additional priorities: housing, attendant care/home care, and adaptive
equipment/supplies.
Priorities for Ongoing Systemic Change Priority Unmet Needs – Short Term Change
Action initiatives to be tackled aggressively over a two to three
year period with the intention of making a real and tangible
difference to the quality of life of Albertans with spinal cord
Inclusive, Empowerment injury. The 2008-2012 priorities of active living and peer support
Barrier Free and Access to were supported through the Alberta SCI Initiative. The new
Communities initiatives have been identified in 2010 as the most important
Supports
priority unmet needs to be addressed as part of On a Roll.
Ongoing
Accessible Affordable Housing
Systemic
Change New Attendant Care/Home Care
Initiatives
Evidence Response
Based, Adaptive Equipment/Supplies
to Priority
Coordinated Unmet Needs
Services 2008 - 2012
Initiatives Active Living
Peer Support
10
We recognize that significant progress against the four
Priority Unmet Needs
visionary outcomes will take concerted effort and time.
For this reason, The Alberta SCI Action Strategy
commits to selecting the most important priority unmet
needs facing the SCI Community for aggressive and
concentrated attention during 2010, 2011 and 2012.
Through the literature review, key informant interviews and a three-round DELPHI process, eight priority unmet needs were identified. The
most important sub-issues for each of these eight need areas were also identified and ranked through the DELPHI process – see Appendix
5 for a summary. The three highest ranked needs will become the subject of Task Teams, each with the mandate to produce results in
their need area. Preliminary notes follow. The graphic below illustrates how the eight priorities relate to the four visionary outcomes – the
remaining five will not be neglected, simply addressed in the context of systemic change.
Visionary Outcomes Top Eight Priority Unmet Needs – in rank order (most important at top)
Inclusive, Barrier Free Communities
Alberta will be an inclusive and barrier free society. Albertans with Affordable, Accessible Housing
SCI will live in fully accessible and welcoming communities, free of
physical, attitudinal and systemic barriers.
Attendant Care/Home Care
Empowerment and Access to Supports
Albertans with SCI will have the support they require to achieve Adaptive Equipment / Supplies
optimal independence and their full potential as contributing
citizens.
Financial Support
Evidence-based, Seamless Services
Service providers at all points on the SCI continuum of treatment, Transportation
care and support will adopt evidence-based best practices; and
seamless, collaborative approaches that optimize outcomes for
individuals, avoid duplication and improve systemic efficiency. Accessible Infrastructures
Response to Priority Unmet Needs Transition Support / Navigation
Every Albertan with SCI will have the opportunity to participate in
the development of customized responses to priority unmet needs Caregiver and Family Support
– solutions that meet evolving, self-identified requirements to
pursue the rights, obligations and benefits of citizenship in their
journey through life.
11
At the outset, the Task Teams will have access to the following
resources:
The top three Priority Unmet Needs identified are:
a prioritized list of sub-issues and potential strategies
Affordable, Accessible Housing related to the priority (from the DELPHI panel)
Attendant Care / Home Care
an initial literature review (related to the priority)
Adaptive Equipment / Supplies prepared by The Alberta Disability Forum and the
Alberta SCI Solutions Alliance Secretariat (CPA AB)
input and suggestions from the Stakeholder Forum
a budget of approximately $25,000 allocated from
All three relate to the visionary outcome of ‘Empowerment and funds set aside for The Alberta SCI Strategy in the
Disability Supports’ – adding a higher level of priority to the entire agreements between The APF, RHF/RHI and the
area of supports. Province of Alberta
A Task Team will be assigned to each of the three priority needs a facilitator to assist in process and the work required
and challenged to develop and launch an Action Plan by Fall between meetings of the Task Team.
2010. The Action Plan will:
The following tables summarize the sub-issues and potential
develop a full understanding of the issues and strategies identified by the DELPHI panel and Forum participants.
challenges that relate to the priority Note that a few of the strategies come from the CPA (Alberta)
Strategic Plan – wherein housing and attendant care were also
identification of best and promising practices related to identified as strategic priorities. FOR DISCUSSION by Task
the priority Teams.
how best to link to and/or leverage current initiatives
what the SCI Community and its stakeholders can do
to generate a breakthrough and/or make a significant
contribution to resolution of the priority unmet need
how any proposed actions should be funded – a
resource development plan
how any proposed actions should be governed,
managed, operated and evaluated.
12
A Starting Point for Action Planning - Affordable, Accessible Housing
Vision: Albertans understand that universal, barrier free home design makes sense in an aging society where increased numbers face
mobility impairment. Wheelchair accessible housing options are available in all communities; housing and safety codes address the needs
of ALL citizens. Government accepts the challenge of making Alberta a model, committed to development AND enforcement of optimal
barrier free design requirements. The special needs of Albertans with SCI are also addressed through provision of home modifications,
equipment and services that are both self-managed and portable (attached to the individual, not the home).
Prioritized Sub-Issues Potential Strategies/Action – for discussion and refinement by Task Team
1. Available work towards a ‘housing first’ model for Albertans with SCI
affordable, location is critical – create more AAA housing in downtown areas and other livable communities that enjoy access to
public transportation, employment opportunities, shopping, active living, etc.
accessible housing engage consumers in design of AAA housing options to recognize the principle of consumer options and choice
advocate for elimination of income restrictions for housing grants and increased funding
partner with Government to develop one additional wheelchair accessible apartment complex in each major urban area
2. Housing linked to work towards linking home care, attendant care and housing funding programs
Attendant Care an aggressive program to develop more locations where accessible housing and attendant care services are integrated
look for opportunities to make on-site care more readily available in existing AAA facilities
3. Accessible clearly define what is meant by barrier-free or universally designed homes, market the concepts as a benefit to all
Communities – partner with the Premier’s Council to develop pilot projects that model best practices in universal access
Advocate for building code modifications to require at least one zero barrier entrance to all new homes, elevators in all
Accessible units,
apartment buildings over one storey, and accessible washroom design
integrated into Work directly with municipal governments to promote AAA housing on an appropriate per capita basis
visitable Identify and support a specific community that is willing to become a best practice role model
neighbourhoods Advocate for legislation and enforcement of current commitments (e.g. Edmonton City Council 2003)
Create an award program that recognizes excellence in public policy, development and accommodation innovation.
4. Transition establish a transition pilot program to manage housing and disability supports as a single issue (transition)
Housing develop 10-12 person transition homes with 24/7 support services in both Calgary and Edmonton
establish a pilot program with Seniors and Community Supports to demonstrate the Continuing Care Strategy
commitment to investing in transitions back to the community (an SCI pilot)
5. First Nations work directly with Band Councils to develop appropriate housing for residents with SCI and other mobility impairments
Housing - AAA partner with the Federal Government to create accessible housing projects on Alberta reserves
General Strategies (not focused on a specific sub-issue):
Establish and maintain an inventory of affordable, accessible housing options in Alberta
Initiate a scan of best practices
Advocate for tax incentives or other funding programs to encourage private sector investment in accessible homes
13
A Starting Point for Action Planning – Attendant Care / Home Care
Vision: Albertans with SCI have the attendant care and home care support they need to participate fully in community life. This care is
responsive to unique needs, self-managed and portable. Albertans understand that this investment in quality of life for the individual also
creates more productive communities and avoids much higher costs associated with institutionalization.
Prioritized Sub-Issues Potential Strategies/Action – for discussion and refinement by Task Team
1. Availability Develop a funding model that optimizes people’s ability to get the care they want and need
of attendant care Develop two or three alternative care models and pilot them
and home care Review CPA (Ontario) option of developing our own attendant care program
services Work with Immigration Canada to facilitate immigration of those committed to and skilled in attendant care
Expand and enhance live-in caregiver programs
Partner with institutions and long term care facilities to provide care that supports individual transitions to
community – demonstrate the economic benefits of investing in optimal attendant and home care alternatives
Address attendant care challenges on reserves
2. Options and Pursue and assist in implementation of self-managed care approaches – customizing service to consumer
Choice (including need rather than being forced to submit to the operating parameters of a single agency
self-managed care) Supports/training to help people with SCI identify, hire, manage and (if necessary) fire their own caregivers
Make better use of information technology to identify and access care options
3. Competitive Eliminate the differential between those who work in homes vs. those who work in facilities
Wages/Salaries Establish formal competency requirements and compensation standards that reflect the related market
4. Inadequate Cost analysis to demonstrate economic wisdom in investing in appropriate community and home based care
Government instead of the institutional option required when care services are not available
Funding Advocacy with ADF partners
5. Need to link work towards linking home care, attendant care and housing funding programs
Housing and Care an aggressive program to develop more locations where accessible housing and attendant care services are
Options integrated
look for opportunities to make on-site care more readily available in existing AAA facilities
6. Skills/Training Work with ADF partners to promote caregiving as a ‘profession of value’
Establish formal competency requirements
Develop our own attendant care training certification program (specializing in SCI), with appropriate partners
Develop a scholarship program to support training for those committed to SCI attendant care
Incentives to training colleges to adapt their programs for service to people with SCI
14
General Strategies (not focused on a specific sub-issue):
Pursue accessibility and visitability issues aggressively – will also reduce some of the cost and need for attendant or home care
A formal evaluation or audit of the adequacy of current attendant care / home care approaches (from SCI perspective)
Advocate for a model of care that optimizes independence, quality, choice, appropriate wages and self-management
A Starting Point for Action Planning – Adaptive Equipment / Supplies
Vision: Alberta is a leader in the adoption of best practices that ensure every person with SCI has the customized equipment and supplies
needed to optimize function, health, employment and participation in community life. Albertans understand the wisdom of investing in
ability and productivity. Consumers, suppliers and practitioners have the knowledge required to identify and implement optimal solutions.
Prioritized Sub-Issues Potential Strategies/Action – for discussion and refinement by Task Team
1. Cost/Funding Gather evidence to support the ‘return on investment’ – benefits of providing optimal equipment
to support Comparison of funding for adaptive equipment province by province
Research ways and means of reducing costs for specialized equipment
optimal solutions Establish AADL funding that allows for optimal equipment to support independence, mobility and full participation in
community life (active living, social, educational, employment)
Develop government/community partnerships to expand and leverage funding
Develop and/or increase funding for equipment maintenance
Establish a recycling program for used equipment – e.g. equipment restoration service, CPA Buy and Sell/Craig’s List
Provide training to consumers, suppliers and practitioners to expand knowledge of options and choices available
Establish one-stop-shopping source/outlet to improve response, increase efficiency and reduce overheads.
2. Customized Work with rehab services to enhance assessment practices to reflect real life circumstances
Equipment to Create a guide to equipment options and their impact on daily life
Provide more flexibility within AADL to help consumers purchase equipment they need rather than limiting selection to
optimize function forced choices (limited/inadequate equipment)
Expand programs like TETRA to create innovative solutions – find ways to market innovations
Emphasize enquiry into emerging and innovative technologies that enhance consumer options and choice
3. Equity – Standards Establish standards that reduce inequity experienced by those who do not have third party funding
and Eligibility Base standards on best practice, best policy review mentioned under General Strategies (below)
Develop pan-Alberta guidelines to ensure equity and portability
4. Vehicle Import successful programs from other Canadian provinces
Adaptations Provide professional assessment and advisory support for consumer training and vehicle adaptation
Train more SCI driving instructors and decentralize training to four or five Alberta locations
15
5. Segregation of Eliminate double standard and unnecessary differences between provincial and federal equipment funding
Programs – need Bring more consistency to adaptive equipment policies and programs – all parts of Alberta, on/off reserve
Link all disability support programs – if possible through the Community Supports model proposed by the Premier’s
for collaboration Council in the Alberta Disability Strategy
General Strategies (not focused on a specific sub-issue):
Advocate for policies/programs that optimize function and provide adaptive equipment through a social rather than medical model
Identify and advocate for adoption of best practices in provision of adaptive equipment and supplies – review other provinces
Demonstrate how optimal equipment can reduce ongoing costs related to attendant care and home care
Work with government champions (elected and staff) to develop and spread appropriate messages about need for change.
16
Appendix 1: Leadership Teams
Alberta Paraplegic Foundation Board
Board of Directors: Kent Hehr, MLA
R. Vance Milligan, Q.C. (Chair) Member for Calgary/Buffalo
Bennett Jones LLP Calgary, AB
Calgary, AB
James R. McPherson, CLU
Gary W. McPherson, C.M., LLD (Vice Chair) MLA Benefits
Canadian Centre for Social Entrepreneurship Red Deer, AB
Edmonton, AB
Mark Wayne
Timothy J. Boyle MGI Securities
Spier Harben Calgary, AB
Calgary, AB
Barbara Sturdy
Gary G. Campbell, Q.C. Caucus Communications Liaison
Miller Thomson Communications, Government of Alberta
Edmonton, AB Edmonton, AB
17
Alberta SCI Solutions Alliance
Barbara Sturdy (Chair) Sandy Saunders
Caucus Communications Liaison Business Services Advisor
Communications, Government of Alberta Business Expertise Unit
Edmonton, AB Government of Alberta
Christian Bagg Chris Schamber
Calgary, AB Quad Design and Barrier Free Consulting
Lethbridge, AB
Kim McDonald
Executive Director Ned Shillington
Paralympic Sports Association Calgary, AB
Edmonton, AB
Leanne Squair
Patrick T. Pellegrino Issue Strategist
Calgary, AB Advisory Committee on Accessibility
City of Calgary
Marc Ross
Calgary, AB Barbara Stoesz
Director, Adult Rehabilitation Division
Glenrose Rehabilitation Hospital
Edmonton, AB
18
Alberta SCI Research Team
Dr. Martin Ferguson-Pell (Chair)
Dean, Faculty of Rehabilitation Medicine Barbara Stoesz
University of Alberta Administrative Director
Adult Rehabilitation Division
Dr. Steve Casha (Vice Chair) Glenrose Rehabilitation Hospital
Assistant Professor, Department of Clinical Neurosciences Edmonton, AB
University of Calgary
Dr. Samuel Wiebe
Dr. Vivian Mushawar (Vice Chair) Department of Clinical Neurosciences
Associate Professor, Department of Cell Biology Faculty of Medicine
University of Alberta University of Calgary
Dr. John Hurlbert Dr. Jaynie Yang
Department of Clinical Neurosciences Department of Physical Therapy
Faculty of Medicine University of Alberta
University of Calgary
Alberta SCI Solutions Alliance Secretariat and Consultants
Teren Clarke
Executive Director
Canadian Paraplegic Association (Alberta)
Secretariat to the Alberta SCI Solutions Alliance
Consultants:
Ken Balmer and Brenda Clarke
RETHINK (West) Inc.
Ladysmith, B.C.
Heather Lissel
Heather Lissel Consulting
Sherwood Park, AB
19
Appendix 2: Terminology
The following list of definitions relates to the content of this document. It will grow and be refined as the Alberta SCI Solutions Alliance
work unfolds and collaborates with its members and partner alliances across Canada (provincial, territorial and national).
Alberta Proposal The RHF proposal submitted to the Government of Alberta to fund SCI quality of life and research projects in Alberta.
Alberta’s Contribution The Government of Alberta’s contribution of $12 million over five years in support of the Alberta Proposal.
Alberta SCI Initiative The activities proposed to be undertaken by the Alberta SCI Solutions Alliance and the Alberta SCI Research Team.
Alberta SCI Research A committee charged with the responsibility of making recommendations regarding SCI research funding under the Alberta Proposal,
Team having regard to the priorities established by the Spinal Cord Injury Solutions Network (SCI SN).
Alberta SCI Solutions A committee, including members from the SCI community, charged with the responsibility of making recommendations regarding
Alliance funding allocations under the Alberta Proposal.
(Alberta SCI SA)
Alberta SCI Strategy A ‘made in Alberta’ strategic plan to identify and address the priority needs of Albertans with SCI. Development of this strategy will be
coordinated by the Alberta SCI Solutions Alliance.
Local Solutions Team A collaborative team from the SCI Community that identifies and approves Quality of Life Funding for RHWIM and other leveraged
funding. The team also provides a forum for people organizations/corporations/government who can bring value to Solutions, to work
together to identify and prioritize needs and to collaborate around new and innovative ways to deliver Solutions.
SCI Solutions Network Is an organization formed to facilitate a national network of organizations and individuals committed to the identification and
(SCI SN) application of innovative and customized solutions that reflect the self‐identified priority needs of people with SCI and will accelerate
improvements to their quality of life. Recently renamed and rebranded as the Rick Hansen Insitute
Quality of Life Funding Money raised through the RHWIM events in communities across Alberta to fund individual and community projects that are focused
on the priority needs of people with SCI.
RHWIM Rick Hansen Wheels In Motion is an annual fundraising event, anchored by a wheelchair challenge event which raises funds for SCI
Solutions in communities across Canada by inspiring people closest to SCI and those who are inspired by the Rick Hansen story to
engage in a national campaign.
20
RHF Rick Hansen Foundation works to create more accessible and inclusive communities for people with a spinal cord injury, and supports
the search for a cure. The Foundation achieves its goals by connecting the people and resources that make innovation possible.
RHI Rick Hansen Foundation Institute – formerly the SCI Solutions Alliance. RHI is an organization formed to facilitate a national network of
organizations and individuals committed to the identification and application of innovative and customized solutions that reflect the
self‐identified priority needs of people with SCI and will accelerate improvements to their quality of life.
SCI Spinal cord injury is an insult to the spinal cord resulting in a change, either temporary or permanent, in its normal motor, sensory, or
autonomic function. The International Standards for Neurological and Functional Classification of Spinal Cord Injury is a widely
accepted system describing the level and the extent of injury based on a systematic motor and sensory examination of neurologic
function. The following terminology has developed around classification of SCI:
• Tetraplegia (replaced the term quadriplegia) ‐ Injury to the spinal cord in the cervical region with associated loss of muscle
strength in all 4 extremities
• Paraplegia ‐ Injury in the spinal cord in the thoracic, lumbar, or sacral segments, including the cauda equina and conus
medullaris
SCI can be sustained through different mechanisms with the following three common abnormalities leading to tissue damage:
• Destruction from direct trauma
• Compression by bone fragments, hematoma, or disk material
• Ischemia from damage or impingement on the spinal arteries
Edema could ensue subsequent to any of these types of damage.
The Alberta Proposal speaks to 4000 Albertans; a number that clearly points to a relatively narrow definition and customer base.
SCI Community People with SCI, their friends and families and the people who serve them.
The SCI Rehabilitation and Quality of Life Services Continuum refers to all of the experiences, services and complications encountered
SCI Continuum
by persons with SCI as they journey from point of injury or onset to full inclusion and citizenship. See Attachment 3.
SCI TRP Spinal Cord Injury Translation Research Program is a Canada‐wide knowledge network of experts in the field of SCI research who
collaborate in order to strengthen the knowledge base of the field through translating breakthrough research findings into best
practices that can be implemented on the population level to improve functional outcomes and quality of life for people with SCI.
Secretariat
Provides administration and support to the Alberta SCI Solutions Alliance.
Solutions Initiatives based on the unmet, priority needs of people with SCI that improve their quality of life. Examples of innovative solutions are
pilot/demonstration projects or trials that identify best practice, collaborative programs/initiatives and support for individual needs.
Solutions Movement A Canada‐wide collaboration of people with SCI, researchers and service providers committed to addressing priority needs through
customized solutions for individuals, identification and validation of innovations, and translation of new knowledge into best practices.
21
Appendix 3: Principles
The following table illustrates the high degree of similarity in the values, beliefs and principles presented in various disability and SCI
policies, plans and strategies.
ADF – Alberta Disability Forum
AH&W – Alberta Health and Wellness ALACD – Active Living Alliance for Canadians with a Disability (Alberta)
S&CS – Seniors and Community Supports SCISN – SCI Solutions Network
CDM – Alberta’s Systems Approach to Chronic Disease Management SCISA – Alberta SCI Solutions Alliance
ADS – Alberta Disability Strategy (Premier’s Council on the Status of Persons ASCICI - Alberta SCI Collaboration Initiative
with Disabilities) CPA – CPA (Alberta) Strategic Plan
Principle AH&W S&CS CDM In Unison ADS ADF ALACD SCISN SCISA ASCICI CPA
Consumer focused Y Y Y Y Y Y Y Y Y
Patient Citizen Determining Commit to
centered, centered voice re. client
patients as services they focused
partners require outcomes
Integrated service teams Y Y Y Y Y Y Y
Care Teams, Integrated Solutions Solutions
coordinated programs Teams Teams
care through & services
continuum
Access (remote/rural) Y Y Y Y Y
Access Y Y Y Y Y Y Y Y
timely
Independence Y Y Y
Information & Choice Y Y Y Y Y Y Y
Cont. care
options
Inclusion – right to Y Y Y Y Y Y Y Y Y
participate
Respect and dignity Y Y Y Y Y Y Y Y
Shared Responsibility Y Y Y Y Y Y Y Y
Rights Y Y Y Y
Wellness & Quality of Life Y Y Y Y Y Y
Empowerment Y Y Y Y Y Y
Synergy – partnerships Y Y Y Y Y Y Y Y Y
and resource sharing
22
DELPHI Panel Rating of the Importance of the Common Principles
In the third round survey, the DELPHI panel was asked to rate the importance of each of the principles listed in the above table –
importance to the SCI Community. The rating scale was from 1-5 with 1 representing VERY IMPORTANT and 5 indicating NOT AT ALL
IMPORTANT.
Principle Rating
Average
Independence 1.43
Inclusion – right to participate 1.50
Respect and dignity 1.61
Wellness & Quality of Life 1.70
Information & Choice 1.75
Empowerment 1.83
Access 1.83
Consumer focused 1.92
Rights 2.04
Integrated service teams 2.30
Synergy – partnerships and resource sharing 2.33
Shared Responsibility 2.33
Access (remote/rural) 2.33
23
Appendix 4: Elaboration of Visionary Outcomes
Policy Foundations
Alberta is an inclusive and barrier free society. Albertans with SCI and Disabled people can live in the community
other disabilities live in fully accessible and welcoming communities, as equal citizens.
free of physical, attitudinal and systemic barriers. Article 19 of the UN Convention on the
Rights of Persons with Disabilities
Inclusion of persons with disabilities is a common theme in recognized policies and plans. Full citizenship for Canadians with disabilities.
We are also fully aware of the complexity of the concept: an individual or population
In Unison: A Canadian Approach to Disability Issues
segment is not included as a full citizen unless physical barriers are removed, supports
are provided to address any personal access issues (e.g. cost, equipment, attendant The Premier’s Council believes that, given the
support), and the person feels welcomed during the experience. proper support and commitment, persons with
Alberta has come a long way, particularly in public policy addressing ALL Albertans, but disabilities will be valued as full citizens, valued
we also have a long in all aspects of Alberta society – fully
participating in the social, economic and
way to go. The SCI
political life of Alberta communities.
Community is
Alberta Disability Strategy – 2002
prepared to join the Adapted from
collective effort NCPAD Best
Physical Premier’s Council on the Status of Persons with
Disabilities
required to make the Practice Paper Integration
(11)
vision of inclusion - US National a person’s right to access A vibrant province where all Albertans
become the reality of Center on is recognized and assured experience the best possible well-being and
Physical independence.
their day to day lives. Activity and
Disability Seniors and Community Supports
We can do much on Business Plan (2008-2012)
our own to
demonstrate and Each person with SCI will have access to full
advocate for our The Value and meaningful participation in educational,
value, particularly of Inclusion recreational, cultural activities and employment
working at the Social – ‘level playing field’ access to full citizenship
three levels must be working
community level. We Inclusion together or inclusion is
Functional opportunities.
also commit to just not possible Inclusion SCI Solutions Network/RHI Business Plan
supporting the efforts one’s ability to gain
social acceptance the individual’s ability Albertans with SCI and other physical
of the Premier’s to function within the
and/or participate in disabilities will enjoy optimal physical, spiritual
Council and the positive interaction accessible active
living environment and emotional well-being within fully accessible
Alberta Disabilities during the active
living experience
and welcoming communities free of physical,
Forum to make attitudinal and systemic barriers.
Alberta an inclusive
Canadian Paraplegic Association (Alberta)
and barrier free Strategic Plan (2008)
society.
24
Albertans with SCI have the support they require to
Policy Foundations
achieve optimal independence and their full potential as
contributing citizens in their community of choice. Persons with disabilities have access to a range of in-
home residential and other community support
We can do little better than to simply endorse the policies that have been services, including personal assistance necessary to
support living and inclusion in the community, and to
developed over the past two decades in Alberta and Canada. Our challenge is to
prevent isolation or segregation from the community.
learn from positive examples across the country and make Alberta the best and
Article 19 of the UN Convention on the
most productive place for a person with spinal cord injury to live. Rights of Persons with Disabilities
This effort will once again be collaborative, with our many partners in the disability, Committed to improve access to disability supports,
health and social service communities. However, the relatively small size of the enhance the portability of these supports, and help
SCI community in Alberta, together with our proven ability to collaborate within the offset the cost of disability supports.
community, positions us to pilot policies and delivery options that remain talk in In Unison: A Canadian Approach to Disability Issues
many cases.
Albertans with disabilities receive the support they
On a Roll is about getting on with it! require to achieve a standard of living and quality of
life that ensures health, safety, comfort and dignity –
personal supports, education and learning supports,
financial supports.
Personal Supports Learning Supports Alberta Disability Strategy – 2002
Premier’s Council on the Status of Persons with Disabilities
Support for daily living Support required to
available at home, participate in education
school, work and play – at all levels in an
Seniors and persons with disabilities have access to
adaptive equipment, care inclusive system. supports and services that enable them to participate
in community life
Choice and Seniors and Community Supports
Self- Business Plan (2008-2012)
Determinationof
Financial Supports th t t Each person with SCI will have universal and timely
Employment Support access to personal and technical supports which are
Addressing the impact of Support required to not linked to income or assets and which are self-
disability, not the prepare for and be directed to individual needs.
presence and reflecting engaged in employment
SCI Solutions Network/RHI Business Plan
the real cost of living – care, mobility aids,
with a disability. adapted workplace
People with disabilities are entitled to supports and
choice which enable them to fully participate in their
community.
Alberta Disabilities Forum
25
Service providers at all points on the SCI continuum of Policy Foundations
treatment, care and support adopt evidence-based best Alberta Health & Wellness calls for health services delivered by
practices; and collaborative approaches that optimize an integrated health care team; patient navigators; and the linking
outcomes for individuals, avoid duplication, and and coordination of local health services to the more complex
improve systemic efficiency. care that is typically provided in larger urban centres.
Vision 2020: The Future of Health Care in Alberta (2008)
Calls for care that is evidence-based, integrated across
Health, social service, and disability institutions and organizations are all organizational boundaries; with service delivery organized
on the same page with the above visionary outcome. The SCI effectively to achieve health outcomes; continuity of care across
community and field is committed to demonstrating how to get it done. the continuum; and more effective engagement of healthcare
We are well positioned with high levels of internal collaboration, regularly providers, patients and the community at large.
updated versions of Spinal Cord Injury Rehabilitation Evidence (SCIRE) Alberta’s Systems Approach to Chronic Disease Management – the
and the Translational Research Program of SCISN/RHI, and expanded Chronic Care Model
commitment of SCI networks across Canada to collaborate on
Calls for promoting excellence, innovation and continuous
implementation of the Solutions Model.
improvement through using best evidence/ best practice. Calls for
increased collaboration with patients and their families, health
Under the Solutions Model, we are positioning teams of cross-continuum care providers, research and education institutions, government
service providers (institutional and community) and informed consumers and the community.
to work collaboratively to:
Alberta Health Services Strategic Direction: 2009-2012
create customized solutions for people with SCI when needs are not
being met by existing programs and policies Investing in community supports: increased home care funding,
health system navigation, transition to community, caregiver
provide leadership towards support, and home technology for monitoring chronic health
Solutions
the adjustment Team conditions, reducing health risks and doctor visits.
of policies and procedures Navigator/
Service Supported by Continuing Care Strategy: Aging in the Right Place (Alberta Health and
as required to better serve Coordinator/ Solutions Wellness, 2008)
Coordinator
people with SCI Peer Supporter
Solutions Committed to best practices leadership to ensure that validated
facilitate seamless Team treatment, care and support interventions are incorporated into
coordination across the recommended practice across Canada. Calls for engaging
continuum of services, and service providers at all points on the SCI Continuum – optimizing
Person treatment, care and support for people with SCI.
share/adopt best practices.
Solutions with SCI Solutions Network/RHI Business Plan
These teams are supported by SCI
a Solutions Coordinator, a Calls for services based on best available knowledge of what
navigator who also works works; seamlessly integrated with other services in the continuum;
directly with the newly injured of consistent quality and portable throughout the province.
and others in critical need. Alberta SCI Collaboration Initiative (2003, 2005)
26
Our collective ability to improve practice is enhanced by dialogue that is being nurtured within the SCI field by SCISN/RHI, The Alberta
Paraplegic Foundation, the Alberta SCI Solutions Alliance and the Alberta SCI Research Team. The graphic to the right was developed by
our Ontario counterparts, led by the Ontario Neurotrauma Foundation; it demonstrates the importance of dialogue and the co-learning that
takes place when service providers, researchers and consumers collaborate. This approach remains a key foundation of On a Roll, the
Alberta SCI Action Strategy.
27
This dialogue will be encouraged and facilitated across the entire SCI Continuum of treatment, care and support services. The dialogue will
occur at two levels:
at the individual level with navigator facilitated interaction between a person with SCI and a nearby Solutions Team – in search of an
optimal customized solution to a priority unmet need
at the systems level as researchers, providers and consumers work together to identify and implement best practices – at each stage in
the continuum and at key transition points along the continuum.
Alberta’s SCI community and field is uniquely positioned to act on well endorsed principles such as integrated service teams, cross
continuum collaboration, and consumer focus.
28
Policy Foundations
Each Albertan with SCI has the opportunity to
participate in the development of customized Provincial, Territorial and Federal Ministers responsible for disability issues
responses to priority unmet needs – solutions endorsed several key values, including: self-determination, autonomy and
that meet evolving, self-identified requirements participation.
to pursue the rights, obligations and benefits of In Unison: A Canadian Approach to Disability Issues
citizenship in their journey through life.
Albertans with disabilities have the rights, freedoms and responsibilities to
make choice and determine their own destinies. All Albertans will have the
opportunity to participate in and provide leadership to public policy
processes, and to activities and associations that define their community.
Alberta Disability Strategy – 2002
Premier’s Council on the Status of Persons with Disabilities
It is impossible to fully separate the last two visionary
outcomes given widely accepted values and principles of Patients as partners – patient engagement, patient and family centered care,
patient centered/ consumer driven services and consumer patient involvement, informed decision making.
choice. Here we simply elaborate on what was initially
Alberta Health Services Quality and Patient Safety Strategic Outline (2009)
outlined in the two previous pages, with more emphasis on
customized, individual interventions. The Chronic Care Model is founded (in large part) on patient education,
patient-centered care, and self-management support. The patient is involved
The Alberta SCI Action Strategy, On a Roll, will in large part and supported in disease management, with follow-up and education.
be founded on the fundamental concept that drives the Alberta’s Approach to Chronic Disease Management
Chronic Care Model that is used across Canada, including Funding individuals based on needs and/or funding providers – providing
Alberta – the best outcomes are achieved through productive choice within the continuing care system.
interactions between informed, activated service consumers Continuing Care Strategy: Aging in the Right Place (2008)
and prepared, proactive practice teams.
People with SCI will have access to and participate in the process of
developing customized solutions (innovative responses to an individual’s
priority, unmet needs) that will meet evolving, self-identified requirements of
achieving equal opportunity to pursue the rights and obligations of citizenship
in their journey through life.
Productive Prepared, SCI Solutions Network/RHI Business Plan
Informed, Interactions Proactive People with disabilities must have a determining voice in the design and
Activated leading to delivery of the programs and services they require.
Practice
Consumer improved Alberta Disabilities Forum
Team
outcomes Persons living with SCI will be fully informed of the services and options
available to them and have the freedom to choose services that best meet
their needs
Alberta SCI Collaboration Initiative (2003)
29
Appendix 5: Unmet Needs – DELPHI Results
The Delphi Survey consisted of three rounds and had a 75% average response rate over the three rounds. This DELPHI survey identified
and ranked the priority unmet needs of Albertans with SCI, including some critical dimensions of each of the priority needs.
After the first two rounds were complete, we choose two clear ‘front runner’ priority needs: housing and attendant care/home care;
these two are clearly winners. The results of the ranking for the next six closely clustered needs are below; “adaptive
equipment/supplies” is top choice in this second group. Principle ratings are listed as well.
The following results are listed in priority order with the highest ranking need or sub-issue first and the rating average from the Round 3
Delphi survey in parentheses: #1 = Highest Priority to # 6 = Lowest Priority
PRIORITY ORDER SUB-ISSUES
Housing • Available, affordable, accessible housing (1.48)
(Confirmed as a top priority in Round 2) • Housing linked to 24/7 attendant care (2.04)
• Accessible communities – accessible units integrated & visitability (all homes accessible) (3.60)
• Transition Housing (3.84)
• First Nations Housing on reserve - (affordable, accessible) (4.08)
Attendant Care/Home Care • Availability of attendant care & home care services (2.12)
(Confirmed as a top priority in Round 2) • Options and Choice (including self-managed care) (2.83)
• Competitive wages and salaries (3.58)
• Inadequate government funding (3.88)
• Need to link housing and care options (3.88)
• Skills/Training (4.56)
• Costs/funding to support optimal solutions (1.72)
Adaptive Equipment/Supplies
• Customized equipment to optimize function (2.28)
• Standards / access to equipment – equitable eligibility (3.04)
• Vehicle Adaptations (4.28)
• Segregation of Programs – Collaboration (4.88)
• Education and training for suppliers/service providers (4.92)
30
PRIORITY ORDER SUB-ISSUES
• Adequate financial support (life above poverty line) (1.16)
Financial Support
• Consumer choice (options, self-management) (1.83)
• Improved availability and frequency of accessible transportation (2.08)
Transportation
• Options – types/variety of transportation choices (3.46)
• Regulations (e.g. codes, curb cuts, license assessments, disabled parking) (3.57)
• Cost of Transportation (3.92)
• Vehicle Adaptations and Driver Training (4.44)
• Rural Transportation (5.13)
• First Nations – on reserve (5.75)
• Better policies, standards and code enforcement (2.44)
Accessible Infrastructures
• Advocacy for community commitment to barrier reduction (3.44)
• Access to work (3.67)
• Funding for accessible buildings (4.32)
• Public education and awareness (4.46)
• Access to leisure (4.66)
• Accessibility in rural areas (5.08)
• Transition; rehab centres to community/home (1.84)
Transition Support/Navigation
• Coordination/collaboration among institutions, organizations and agencies (2.68)
• Navigation Support (2.71)
• Information, knowledge and education (2.72)
• Information and education (1.70)
Caregiver and Family Support
• Recognition of the importance of their roles (1.88)
• Counselling Support (2.38)
31
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