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Continuing Care Health Services & Accommodation Standards
Summer 2005

Submission: Multiple Sclerosis Society of Canada: Neil Pierce, President, Alberta
Division, Michelle Kristinson, Manager of Government and Community Relations and
Brenda Kalinovich, Outreach Coordinator, Calgary Chapter

Contact: Michelle Kristinson at (403) 250-7090

Introduction:
The MS Society of Canada is committed to supporting individuals who are in the
continuing care health services spectrum. The Outreach Coordinator is responsible for
visiting clients who live in supported living including long-term care facilities and
personal care homes. The MS Society provides a friendly visiting program, education,
advocacy and support counseling to persons affected by MS including the client and
their support system. It is through this contact that we have come to understand the
complex needs of clients and residents.

In Alberta, MS affects about one of every 350 people. This is one of the highest rates in
the world and nearly twice the rate of MS in central Canada. The Calgary MS Clinic has
nearly 5,000 registered patients, one of the largest single-center clinics in the world. A
similar number of people are patients in Edmonton through a fragmented service
delivery system. MS is a disease of the central nervous system, which includes the
brain and spinal cord. In MS the disease attacks the protective myelin covering causing
inflammation and often destroying the myelin in patches. When this happens, the
natural flow of nerve impulses along nerve fibres is interrupted or distorted. The result is
a wide variety of symptoms including vision disturbance, severe fatigue, balance and
coordination problems, spasticity, weakness, altered sensations, heat sensitivity,
difficulties with speech and swallowing, bladder and bowel problems, sexual
dysfunction, short term memory loss and cognitive problems and paralysis. MS is
diagnosed between the ages 15 and 40 with the average age being 28. Because MS is
diagnosed when individuals are in the prime of their life, they can experience many
losses including loss of income. Since this is a young person's disease many individuals
have not had the opportunity to develop retirement or savings plans, which leaves these
individuals economically vulnerable. Additionally many individuals have not had the
opportunity to start a family and develop a support system.

In Calgary for example, there are more than 120 individuals living in long-term care
facilities and more than 20 living in personal care homes. The number of individuals
living in institutional settings throughout the rest of Alberta is unknown. The majority of
these individuals are between the ages of 18-64 yet they live with seniors who in some
case are more than 40 years their senior. Because MS is an unpredictable progressive
disease the needs of individuals are complex and can change over a short period of
time. It is vital that these individuals receive therapeutic services such as physiotherapy,
occupational therapy, recreation therapy and social work.

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The MS Society is committed to working with the Government, the staff at the facilities
and the Regional Health Authorities to ensure that identified unmet care needs can be
addressed. We respectfully submit this document on behalf of the Alberta Division and
Chapters throughout the Province as our response to the draft standards. Please do not
hesitate to call with any questions or concerns.

Part One: Draft Standards for Continuing Care Health Services

1. Albertans have timely access to continuing care health services based on
assessed unmet needs.

The MS Society supports province wide implementation of a single point of entry into
the continuing care system however that is only one measure that will promote access
to continuing care health services based on unmet needs.

Home Care Access:
· There is a lack of transparency with Home Care and how "appropriate settings
for delivery of health services" is determined. What are the guidelines for
determining when a community setting is not appropriate for health service
delivery? How is it determined that the provision of services in these
environments be denied? The MS Society receives many reports from clients
who have been told by Home Care that their needs are exceeding what Home
Care can provide. The ONLY alternative that is ever explored is personal care
homes or long term care facilities. What choice do individuals have when Home
Care will not provide necessary care in the community but to leave the family
home and move into facilities that are institutional and mainly comprised of
seniors?
· There are a lot of inconsistencies throughout the Health Regions with how much
home care individuals are able to receive. It appears that there are Home Care
coordinators who advocate on behalf of their clients and others who are quick to
advise families that the individual must move into a personal care home or long
term care facilities. It is critical that Home Care communicate the services that
individuals qualify for and be able to provide documentation that outlines what
the Home Care is responsible for. It is equally critical that Home Care provides
clear explanations when they are no longer able to provide care in the community
as well as a report of the options that were explored 1.2 (b).
· Individuals with MS often find themselves living in long-term care facilities
because Home Care is unable to address their care needs in the community. The
needs of a young chronically and progressively disabled population are not being
addressed in the current system. The MS Society encourages the government to
review the maximum dollar allotment (the amount has not been reviewed since
1991) provided to each individual receiving continuing care health services,
specifically home care in the community. If care dollars were unbundled from
Home Care, individuals would truly be allowed to choose their preferred setting

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which for many would be to stay at home with their family. The cost to the system
is in fact less if individuals remain in the community compared to moving in to
personal care homes and long term care facilities.



Wait lists 1.1 (e):
· Individuals who are waiting to be placed in continuing care require a thorough
explanation of the process. Currently there are individuals who are on waitlists for
personal care homes and long term care facilities that do not have any clue as to
what is happening. Many have been told that there is a first bed policy, which
requires the individual to accept the first placement that becomes available. This
means that individuals have no choice in choosing their preferred setting
(Standard 1.2). The MS Society has received numerous reports from persons
with MS who feel they have faced negative consequences when they have
turned down the first bed that was available. The consequences have ranged
from being told that are going to be taken off of the list for placement or that they
are being dropped to the bottom of a long list. In reviewing some of the cases it
was completely understandable why some individuals did not want to take the
first placement as the home or facility was completely inappropriate. It should be
noted that individuals have taken the first placement with the belief that it is short-
term, only to be encouraged by Transition Services to reconsider because of the
long wait list. The current system is punitive and provides limited if any choice for
individuals who are already facing so many losses.

· The MS Society recommends education and sensitivity training for staff involved
in the continuing care spectrum to better understand the disease and broaden
the range of quality of life options. To provide satisfactory continuing care
services the system needs to be more sensitive and empathetic to individuals
who are facing significant losses which may include declining health, family break
up, financial stress and loss of independence.

Long Term Care Facilities
· Residents and family members must receive consistent and factual
information about their care and supported living options, and this must
happen prior to admission into a facility. Recently two individuals moved into
a facility that was providing physiotherapy but within months of moving in the
service was cut and no longer available. The decision for these two
individuals to choose that particular facility was based on the fact that
physiotherapy was offered on site. A different decision would have been
made if all of the facts had been shared with them upfront. Some residents
with MS may not be able to access physiotherapy in the community due to
such reasons as limited financial resources, personal care needs that can not
be met in the community without assistance from an attendant and a lack of
reliable transportation.

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2. Albertans requiring continuing care health services should receive services
based on their individual needs, with opportunities to participate in their care.

The MS Society supports the concept of developing care plans to ensure that the
services are responsive to individual needs. We support that the care plan include
goals, expected results and time lines. The MS Society however is concerned that the
staff who will be developing the care plans will be working within a senior's framework,
which is inappropriate for young adults with progressive disability.
· It is critical that the care planner, client and family member have all the
necessary information to make informed decisions. There are agencies in the
community including the MS Society who would be more than willing to provide
assistance with education opportunities.
For example: The majority of individuals diagnosed with MS experience heat
intolerance, which can cause the disease to mimic an acute attack. If the care
planner does not have this knowledge they will not understand the need for
individuals to have access to air conditioning. We have had to advocate on
behalf of several clients whose health was compromised because they were
living in a facility that was too warm.
· It is also imperative that other factors be considered including the age of the
person receiving the service, the type of disability (chronic, progressive, stable,
episodic,) the anticipated length of time that they will be using the service and
their quality of life opportunities. All of these factors must be integrated into the
care plan to respect individual needs.
For example: Individuals with MS experience significant fatigue, in fact in can be
the most disabling symptom and it is also the most misunderstood. In personal
care homes and long term care facilities individuals have to wait to have a nap
based on a schedule that is not reflective of their specific needs. The MS Society
was visiting a woman who lived in a long-term care facility and she begged us to
assist her with getting into bed so that she could rest. The nursing staff was
notified of this woman's request and we were told "she knows better, she does
not get a nap on Wednesdays, only Tuesdays and Thursdays". Thankfully the
client's husband arrived and he lifted her into bed so that she could rest. The MS
Society advocated on behalf of the client in an attempt to change the "nap
schedule" but had limited success, as individual needs are not a priority in large
care centres.

· Another concern that we have is that necessary services will be omitted from the
care plan due to funding restrictions. The concern is that vital services such as
physiotherapy, occupational therapy, recreation therapy and social work will not
be included in the care plan of young people who desperately require
rehabilitative services. An individual can achieve all of the goals outlined in a
care plan but if the plan did not include the fundamental services needed to
enhance the individual's quality of life the result will be a false positive. One

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fundamental service that is almost always overlooked because of funding
constraints is the opportunity to provide environmental control systems, which
can offer so much more independence. By way of case illustration, a resident
outside of Edmonton can't answer the phone on his own, use his home computer
or change the channel on his television without assistance which wouldn't be
necessary if he had an environmental control system that he could operate.
Without it, this gentleman remains lonely, depressed and dependent.
· One of the biggest barriers to achieving a flexible responsive continuing care
health service is funding. Additionally the red tape and the attitude of "we have
always done it this way", only contributes to the belief that one-size fits all.
Without proper funding the facilities are working with bare minimum staff, that are
burned out and feeling overwhelmed.

3. Albertans with complex, multiple chronic health conditions, require integrated
and interdisciplinary health care services.

The MS Society supports the concept of integrated and interdisciplinary health services
but feels that the system needs to be evaluated and properly funded to address unmet
needs. There have been so many cuts to essential services that there will need to be an
injection of money to bring the system back to the appropriate level of service. The MS
Society had been told that facilities receive funding based on providing service to
medically stable but fragile seniors, which does not allow for the diverse needs of young
adults with progressive conditions such as MS.
· Standard 1.17 advises that the purpose of the therapeutic service is to assist
residents or clients in achieving a maximum level of independence. The MS
Society strongly agrees with this statement and supports the implementation of
this section of the standards.
· Standard 1.17 (b) identifies optional therapeutic services, which include
respiratory therapy, speech language pathology, audiology, kinesiology,
volunteer coordination and counseling. The MS Society recommends that
counseling services not be an optional service as it is critical that individuals have
access to psychosocial support particularly at this time in their life.
· There are many facilities that have eliminated physiotherapy and recreation
therapy services despite protests from residents, family members and community
advocates. Residents have identified that they don't feel heard by the
administration and feel threatened when they make too much of a commotion
about the cuts. Recreation and social opportunities are essential services that
can have a positive impact on an individual's physical and mental health. It is
important to note that the activities must be age appropriate, meaningful and
socially-valued so that it enriches their life rather than just providing an activity to
kill time.
Example: There is a facility in Calgary that has eliminated all of the recreation
therapy positions and replaced them with activity coordinators who are
responsible for 150-200 residents. The coordinator attempts to address the social
and recreational needs of a huge diverse population by providing group options.

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The MS Society has been approached to provide social and recreation
programming in care facilities, which is not possible with our limited resources.
· The MS Society receives calls from staff at facilities that are looking for
information as to how they can reduce the time spent on care. The most recent
example being a facility phoning to inquire if a resident should be switched to a
liquid diet because feeding her was taking the nursing staff too long. A liquid diet
should be considered when the individual has a medical need for the change, not
because someone does not feel that they have time to sit a feed a person! In this
particular case a liquid diet would be extremely inappropriate. Following the call
we decided to visit the individual and found that she was still in bed at 11:30 am
and had not been fed breakfast and was very hungry. Again, if the facilities do
not have adequate funding it will be challenging to meet the goals of the care
plan.

4. Albertans requiring continuing care health services receive quality services
from highly skilled professional and non-regulated care providers.

The MS Society stresses that appropriate health care professionals must be available to
individuals accessing continuing care services. Currently the staffing levels are
inadequate at most facilities and in the community, and the standards are not being
evenly upheld by the Regional Health Authorities across the Province. Without
appropriate funding and regulations the issue of inadequate care will continue to
challenge the system and present difficulties in achieving the outcomes identified in the
standards.

Part Two: Creating a Culture for System Quality Improvement and Quality
Assurance Standards of Practice

Albertans are assured that continuing care services are of the highest quality
and that opportunities are taken to continually improve the quality of service
provided and the quality of life of the resident.

The draft standards are a start to supporting quality health services. The MS Society of
Canada requests that the government review services to identify gaps in service for
young adults (18-64) who rely on the continuing care services spectrum. As previously
mentioned the needs of a young population with progressive disability can look quite
different from that of a medically stable but fragile senior.
The MS Society encourages the government to think creatively about how services can
be delivered to a young population. For example: Expand funding for community Home
Care, which will enable families to remain together. With the appropriate supports an
individual with a disability could self direct how they receive care, allowing them the
opportunity to remain an active participant in their life and in the community regardless
of where they live in Alberta?


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Albertans are assured that the quality of health services are being monitored and
changed, as necessary.

The MS Society supports the draft processes for improving the monitoring and
reporting on quality indicators as long as it does not take time away from the service
providing client care.

Other issues that are not adequately addressed by the new draft standards.
The MS Society is concerned with the current abuse protocols. The current system
does little to protect the individual when they are in the process of filing the complaint. It
has been our experience that individuals are terrified to "rock the boat" and are willing
to put up with abuse for fear of retribution. It is important to note that the individuals
who are using continuing care health services are society's most vulnerable population
and are typically not in a position to advocate on their own behalf. The MS Society
would recommend that the Alberta Government look to other leaders in this area for
advice on how to ensure that there is a framework in place that protects the victims. We
recommend reviewing framework of the Disabled Persons Protection Commission.
(http://www.mass.gov/dppc/)

Part Three: Proposed Accommodation Standards

Accommodations standards will promote the safety, security and quality of life
for Albertans in supportive living and long-term care facilities.

Please see attached information.

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