Envisioning Alberta's Future by CNIB Alberta

ENVISIONING ALBERTAâ&#x20AC;&#x2122;S FUTURE A plan to create a sustainable care framework for blind and partially-sighted Albertans

Presented to the Government of Alberta by CNIB (Alberta Division)

THE VISION OF THIS PLAN: Every Albertan living with vision loss has access to a sustainable model of rehabilitative care so they can become independent, mobile, and fully-engaged in our communities.

LETTER TO ALBERTANS Alberta, During the 2015 provincial election, you spoke loud and clear: you believe essential rehabilitative care for your fellow Albertans who have vision loss should be fully-funded by our health care system. Some of you were shocked when you realized that, unlike many other medical conditions, the rehabilitation required for blindness or partial sight is actually delivered using mostly charitable dollars. Chicken dinners, door-to-door solicitations, direct mail, annual grants – without this type of charitable support from the community, Albertans living with vision loss would not be able to receive the vital care that they need… and deserve. Envisioning Alberta’s Future outlines our appeal to the Government of Alberta to fully-fund essential rehabilitation services for blind and partially-sighted Albertans. By providing a high-level overview of what rehabilitation actually means for vision loss, the patient outcomes we strive to deliver, and the current funding structure, we hope to provide you with a clearer picture of what the state of care looks like for someone with blindness or partial sight.

Albertans living with vision loss would not be able to receive the vital care that they need… and deserve.

But we can – and must – do better. Today, there are close to 53,000 Albertans living with blindness or partial sight. When we think about the support network that is impacted by vision loss – parents, children, and caretakers – this number reaches close to 150,000 Albertans. This community across Alberta is asking for action today. They want to know that there is a sustainable model of care for generations to come. The first step is to acknowledge that Albertans with vision loss must be able to access a fully-funded model of rehabilitative care. Sincerely,

John J. McDonald Executive Director CNIB Alberta

TABLE OF CONTENTS Rehabilitation is essential for visually-impaired Albertans.

Our charitable funding model has challenges.

We can – and must – do better.

We are making a difference.

Albertans care about Albertans with vision loss.

Alberta’s doctors also believe in our vision.

A phase-by-phase solution.

The details.

REHABILITATION IS ESSENTIAL FOR VISUALLY-IMPAIRED ALBERTANS. If you can see, it’s easy to take many of the things we do for granted. You can cook a meal for your family. Do the laundry. Walk down the sidewalk safely. Take public transit. Stay connected using technology. With access to rehabilitative care, all of these things are possible for someone living with vision loss. It’s important to understand the full breadth of programming CNIB currently provides to make this a possibility – at no cost to our clients, funded by mostly charitable dollars.

LIVE.

Independent Living Skills

Independently. With confidence. • One-on-one guidance on completing everyday tasks in the home: Our clients relearn the basics of food preparation, personal care, home management and organization, and financial management. • Instruction on braille and other communication methods for people with vision loss: Depending on the severity of vision loss, our clients can learn new ways of communicating such as braille, the globally-recognized tactile alphabet.

MOVE.

Orientation and Mobility

Safely. Independently. • Indoor and outdoor mobility training: Our clients learn how to use the white cane to safely navigate their indoor and outdoor environments. • Orientation training: Our clients learn how to use other senses to identify landmarks and their sense of direction while travelling.

GROW.

Children and Family Services

Like any other child should. • Achieving developmental milestones: Our dedicated early intervention and children’s services staff work with toddlers and children with vision loss to help build independence, utilize their other senses, and meet developmental milestones so they can safely integrate with their peers in a public school setting. • Parental guidance and support: We offer personalized support to parents who have children diagnosed with blindness or partial sight.

CONNECT.

Assistive Technology

Be engaged. • Technology training: Our technology specialists provide hands-on training to help clients use the latest technology to aid in their daily living. With this support, clients can use mobile devices and screen-reading software to stay connected – at home and in the community.

TRIAGE.

MAXIMIZE.

SUPPORT.

Registration and Referral

Low Vision Assessments

Deafblind Services

SETTING A ROADMAP.

LIVE LIFE TO THE FULLEST WITH PARTIAL SIGHT.

THOSE WITH COMPLEX NEEDS.

• Our Low Vision Assessment program helps clients cope with partial sight, connecting them with the tools and knowledge needed to live as independently as possible and maximize existing vision.

• Our team of specialists provides one-on-one support to individuals who are deafblind, including intervention services that allow deafblind clients to interact and communicate in daily settings.

• Clients work with our Registration and Referral team to determine their individualized pathway to independence.

OUR CHARITABLE FUNDING MODEL HAS CHALLENGES. The Alberta Medical Association’s (AMA’s) president couldn’t have been more accurate about the current state of funding for essential rehabilitative care for the visually-impaired: “CNIB has historically provided all the services for vision loss in Alberta and they’ve done an excellent job of that. So I think, for that reason, the government has – sort of – just left it to them. I think it’s now time for the government to accept the fact that [rehabilitative] treatment for vision loss is really a disability that requires the same sort of services and amounts of funding from government as other types of injury.” -Dr. Richard Johnston, President, Alberta Medical Association in an interview with Global News (June 8, 2015) Our current business model – where we rely mostly on charitable dollars to provide vital rehabilitative care – is unsustainable and unpredictable. This is particularly true when we consider the increasing prevalence of vision loss given our growing and aging population.

CURRENT FUNDING MODEL: Government of Alberta ministry responsible for investing in rehabilitation: Alberta Human Services – Cross-Disability Supports Initiative Annual investment: Approximately $1.7 million based on hours billed* ** in 2014/15 • *Under our current funding model, approximately $200,000 is directed towards non-rehabilitative programming, including peer support and volunteer services. Therefore, when we look at strictly core rehabilitation funding, the total investment from Human Services is $1.5 million. • **Approximately 27,000 direct and indirect hours of rehabilitative care were billed in 2014/15. Current cost to provide rehabilitation: Approximately $4 million* in 2014/15 • *This cost reflects all of our core rehabilitative programming that is accessed by approximately 4,957 unique clients in 2014/15. Based on their pathway, a unique client may need multiple interventions in more than one rehabilitation program. Gap: $2.5 million • *This figure is reflective of CNIB’s capacity to deliver services under our current funding model.

A GAP IN INVESTMENT – BUT MORE IMPORTANTLY, A GAP IN CARE: CNIB has been the beneficiary of a longstanding partnership with Alberta Human Services, but as our service delivery model evolves to meet the needs of our clients, so should our partnership with the Government of Alberta. We envision a partnership that is completely integrated with our health care system, so that our clients’ rehabilitative needs are considered to be a health matter, not a disability support.

CHALLENGE:

A fully-funded and fully-integrated model of care can:

• Sole provider of rehabilitative care in Alberta relies on unstable and unpredictable streams of charitable funding – putting patient care at risk with increasing wait times

• Ensure that patients who need rehabilitation will be able to access it in a timely manner, no matter the charitable environment

• No real clarity around a clinical pathway for a patient diagnosed with vision loss, thereby creating gaps in care

• Ensure that rehabilitation for vision loss is recognized in the continuum of Alberta’s health care system, with all medical professionals recognizing and referring rehabilitation as a part of a patient’s clinical pathway – so that no Albertan with vision loss is left behind

• The number of visually-impaired Albertans is expected to increase 30% in the next 10 years

• Create a model of rehabilitative care that is sustainable and is prepared for the impending vision loss crisis

WE CAN – AND MUST – DO BETTER. Under the current charitable model, we know that Albertans with vision loss are falling through the cracks. CNIB, as a registered charity that relies heavily on philanthropic support, has been able to provide care within its funding constraints. However, rehabilitation is an essential health service. It helps people live, move, connect, and grow. It empowers patients to take charge of their lives and become fully engaged members of our society once again. And it is recognized as such when an individual suffers a spinal cord injury, stroke, brain injury, or amputation. Now it’s time to treat vision loss the same way.

Primary rehabilitation covered by Alberta Health? Details

Acquired brain injury

Amputation

Deaf and hard of hearing

Spinal cord injury

Stroke

Vision loss

Yes

Inpatient and outpatient rehabilitation delivered through AHS facilities throughout Alberta – for all ages

Rehabilitation delivered by CNIB, a registered charity, through six office locations through Alberta – for all ages

*Primary research conducted by CNIB can be found on Appendix A.

WE ARE MAKING A DIFFERENCE. It’s one thing to toot our own horn. It’s another to apply internationally-recognized outcome measurement tools to assess our work and ensure that our clients are receiving optimal care and achieving their goals. Program

Measurable Outcomes

Measurement Tools Applied

Preliminary Data

LIVE.

Independence, Confidence, Vision-Related Quality of Life (VQOL)

Canadian Occupational Performance Measure (COPM); Vision Core Measure (VCM1) and confidence item from measure developed by UK ophthalmologist Dr. Andrew Frost

Data is currently being collected and analyzed. An initial round of data analysis expected before end of 2015.

Independence, Confidence, Safety, VQOL

COPM; VCM1, confidence item, and safety subscale developed by Dr. Frost

Independence, Confidence, Engagement in Leisure Activities, VQOL, Knowledge of how to effectively use assistive technology

COPM; VCM1, confidence, and rec/ leisure items developed by Dr. Frost; knowledge of assistive technology item developed by CNIB

School readiness, goal attainment, developmental milestones, independence, VQOL selfacceptance, self-advocacy, expansion of social network

COPM; Oregon Project Transition Checklist; Vision Skills in the Natural Environment Transition Checklist; Oregon Project; CVI range (for cortical visual impairment); Oregon Project Daily Living Skills Subscale; Impact of Visual Impairment – Children (IVI-C); self-acceptance, self-advocacy, and social network items developed by CNIB

Independent Living Skills

MOVE. Orientation and Mobility

CONNECT. Assistive Technology

GROW. Early Intervention / Children and Family Services

Program

Measurable Outcomes

Measurement Tools Applied

TRIAGE.

Hope/Optimism, Knowledge of CNIB services, Clients are connected to CNIB services

Single item measures developed by CNIB

Independence, confidence, VQOL, better understanding of eye condition, reading difficulty, engagement in leisure activities

COPM; VCM1; confidence, and rec/ leisure items developed by Dr. Frost; reading difficulty item from the Reading Behaviour Inventory (RBI); better understanding of eye condition item developed by CNIB

N/A

Registration and Referral

MAXIMIZE. Low Vision Assessments

SUPPORT.

Preliminary Data

Deafblind Services

ALBERTANS CARE ABOUT ALBERTANS WITH VISION LOSS. When CNIB began a public conversation about the current state of rehabilitation funding in Alberta, the response we received was extraordinary. We are proud to see Albertans playing a role in voicing their concern around the sustainability of rehabilitative care for those living with visual impairment. Albertans want to see a better future for the visually-impaired. “This needs to change! NDP, show us your stuff and make it equal for all Albertans!” – Julie Wilson, Calgary “I was shocked to learn that this funding is not already in place. Here’s hoping that our new government has a better set of priorities than the old one!” – Gary David Hill, Wetaskiwin

• During the provincial election, there were close to 10,000 social media engagements in the form of “likes,” “retweets,” and comments on Facebook, Twitter and YouTube. These were in direct response to social media posts related to the state of funding for essential vision loss rehabilitation. • During the provincial byelections in Fall 2014, over 2,600 Albertans signed a statement of support for full funding for rehabilitation. • During the month of June 2015, nearly 1,000 Albertans have submitted letters to the Premier, Health Minister, Human Services Minister, and all party leaders asking for full funding for essential rehabilitation services for the visually-impaired.

Alberta’s doctors also believe Albertans with vision loss deserve access to a sustainable model of rehabilitative care.

The Alberta Medical Association (AMA) and our members support the concept that excellent rehabilitative care is key to ensuring that our patients are able to progress towards independent living following disease or illness. Our current healthcare system provides significant resources towards rehabilitation for such disorders as stroke, hip and knee surgery and various neurological movement disorders. We believe the same opportunities need to be offered to Albertans with vision loss. – Dr. Richard Johnston, President, Alberta Medical Association (AMA) to the Minister of Health (Dated May 4, 2015)

That the AMA advocate for every Albertan who is blind or partially-sighted to have access to government funded vision rehabilitative care. – Alberta Medical Association (AMA) Spring Representative Forum (RF) 2015 member resolution

We would like to see primary rehabilitation for the visually-impaired better integrated within the health care system, and fully funded so that an agency like CNIB does not have to rely on charitable dollars to provide this essential service. – Dr. Matthew Tennant, President, Retina Society of Alberta to the Minister of Health (Dated March 27, 2015)

A PHASE-BY-PHASE SOLUTION. CNIB is asking the Government of Alberta to take the following steps towards a fully-funded, sustainable model of rehabilitative care for nearly 53,000 Albertans living with blindness or partial sight. CNIB, Alberta’s doctors, and other stakeholders look forward to being a part of this phase-by-phase solution. Timeline

PHASE I

Building a rehabilitative care framework

Details

Fall 2015

Government of Alberta – through Alberta Human Services (current partnership) or Alberta Health (ideal partnership) agrees to close CNIB’s funding gap in the provision of vital rehabilitative care for the visually-impaired

Through an increased billing arrangement with Alberta Human Services (current) or a multi-year commitment from Alberta Health (ideal), the total annual costs of delivering rehabilitative care (within current structure)is fullycovered. For 2014/15, this totaled approx. $4 million. This funding arrangement should remain until a more comprehensive model of care is developed and realized under Phase IV.

Fall 2015 (announcement)

Alberta Health strikes a “vision loss taskforce” to begin a collaborative, visioning process for a fully-integrated rehabilitative care model in Alberta. Taskforce members would include representatives from CNIB, Alberta Health, the Alberta Association of Optometrists (AAO), and the Alberta Medical Association (AMA).

All stakeholders acknowledge that they have a vested interest in the future of rehabilitative care for the visually-impaired in Alberta. A taskforce can craft recommendations for the Minister of Health on a collaborative, integrated care model that takes into consideration the contributions that can be made by government, physicians, optometrists, and CNIB.

Addressing the gap

PHASE II

Milestone

Spring 2016 (work begins)

Timeline

PHASE III

A fully-integrated rehabilitative care framework is in place

Details

Spring 2017

The “vision loss taskforce” presents recommendations to the Minister of Health around a fully-integrated rehabilitative care framework in Alberta.

Spring 2018

Using recommendations from the “vision loss taskforce” and in partnership with CNIB, AAO, and AMA, the Government of Alberta implements a fully-funded, fully-integrated rehabilitative care model for Albertans living with vision loss.

Presenting the rehabilitative care framework

PHASE IV

Milestone

Recommendations will be considered and provide the foundation upon which the Government of Alberta can begin fully integrating the provision of rehabilitative care within our health care system.

THE DETAILS. Phase I: Addressing the Gap Program

Costs (2014/15)

LIVE.

Assumptions All figures represent both direct service costs and client-related costs including administration, office accommodations, etc.

$444,522

Independent Living Skills.

MOVE.

$318,970

Orientation and Mobility.

GROW.

$546,673

Childrenâ&#x20AC;&#x2122;s Services and Early Intervention.

CONNECT.

$838,644

This figure also takes into account the costs of operating Shop CNIB, where many products are demonstrated for client purchase.

$1,208,555

Total costs include intake, referral, as well as client support services as the initial part of a clientâ&#x20AC;&#x2122;s adjustment to vision loss

Assistive Technology.

TRIAGE. Registration and Referral.

MAXIMIZE.

$435,332

Low Vision.

SUPPORT.

$166,990

Deafblind Services. Total costs to deliver rehabilitation: Approximately $4 million Current GoA investment in rehabilitation: $1.5 million from Alberta Human Services Our gap: $2.5 million

OUR ASK:

That the Government of Alberta addresses the immediate gap in funding of rehabilitative care through: (1) An increased allocation of funding from Human Services totaling $4 million OR (2) Funding allocation from Alberta Health totaling $4 million. Either option should ensure ongoing allocations until Phase IV of this plan is realized (approximately 3 years).

Phase II + III: Building and presenting a rehabilitative care framework Activity

Details

Budget

Establish a “Vision Loss Taskforce”

Representatives from AMA, AAO, CNIB, Alberta Health

A clear mandate determined by the Minister of Health to come up with recommendations on a fully-funded, sustainable rehabilitative care framework for Albertans with vision loss.

Administration

Taskforce Administrator to coordinate Taskforce activities and timelines

$85,000 + $20,000 in established honoraria for health professionals

Research

Taskforce to oversee research around best practices (global scan) and health economics implications (e.g., Institute of Health Economics)

$85,000

Policy Development

Developing practice guidelines around health professionals’ role in delivery of a fully-funded rehabilitative care model, considering implications on physician and optometrists’ compensation structures

$55,000

Consultations

Consulting with stakeholders, including visually-impaired Albertans, physicians, optometrists, occupational therapists, rehabilitation service providers

$55,000

CNIB staff costs

Director, Public Affairs $60.00 x 240 hours

$14,400

Total costs to establish and administer a “Vision Loss Taskforce”: $314,400

OUR ASK:

That Alberta’s Minister of Health approves the creation of a “vision loss taskforce” that will look into the development of a sustainable, fullyfunded, fully-integrated model of rehabilitative care for the visuallyimpaired. The taskforce will be funded and have responsibility for making policy recommendations around this goal. The timeline for this taskforce’s activities will be no longer than one year.

Phase IV: A fully-integrated rehabilitative care framework is in place Budgetary Implications: The taskforce, working with health economics professionals both within and outside Alberta Health, will outline budgetary implications of a fully-funded, fully-integrated rehabilitative care framework.

OUR ASK:

That Alberta’s Minister of Health commits to a fully-integrated rehabilitative care framework, considering the recommendations made by the “vision loss taskforce.”

FOR MORE INFORMATION, PLEASE CONTACT: CNIB Public Affairs 780.453.8315 (Edmonton) 403.261.7215 (Calgary) media-abnwt@cnib.ca