Transition

BC coalition of People with Disabilities

*

MARCH/APRIL 1997

Mary Lambert
on individualized funding:

also in this issue:
IF: An International Perspective
BCCPD Supports IF Projects
More Cutbacks from MHR
No-Fault Update

Where there's a
Will There's a Way

A community education festival called the Commu­
nity Development Institute (CDI) will take place this
summer on the Sunshine Coast in Sechelt, BC during
the week of July 28 to August 1.

The CDI is an excellent opportunity for people of all
ages and sectors to acquire and impart information
and skills on local leadership for sustainable commu­

nities.
Community economic development, environmental
stewardship and local goveranance will be some of
the topics covered through over 60 workshops of­
fered by experienced and skilled facilitators. There
will also be many opportunities for learning practical
skills and for having fun: permaculture, straw-bale
construction, site visits to
community projects, art,
theatre and much more. A
limited number of bursaries
will be made available.
For more information,
please contact Zarina
Mulla at SPARC of BC at

736-5576.

Monday, July 28th to

Friday, August 1st, 1997
Melt, Sunshine Coast

BCTV Offers Scholarship
In recognition of Don Smith’s long­
term contributions to the
broadcasting industry, BCTV is
pleased to establish a trust fund in
his name that will provide
scholarships to a maximum of
$2,500 per year for up to four
students enrolled in a recognized
Broadcast Communications
Program, or a university program
with an emphasis on broadcast
journalism, leading to a journalism
degree. Funds will be payable each
semester, based on continued
excellent performance and
commitment to the program.
These scholarships are
intended to encourage entrance to
a career in broadcasting within
groups which are currently underrepresented in the broadcast
industry. These groups are: First
Nations peoples, people with
disabilities, visible minorities and
women.
A letter of application,
accompanied by a resume, current
scholastic record, and two personal
letters of reference must be
submitted to the following address
before May 1st of each year:
Scholarship Selection Committee,
BCTV, A Division of Westcom TV
Group Ltd., P.O. Box 4700,
Vancouver, B.C. V6B 4A3. ~

transition
is published eight times per year by
the TRANSITION Publication Society.

Founding Editor
Richard A. Watson

Editor
AnnVrlak

in this issue

Contributing Editor ■■
Geoff McMurcHy '

Layout
AnnVrlak ■ ”
Cover Layout
Geoff McMurchy*

Editorial
by Paul Gauthier....................................................................

Feature

Cover Photo..,.
John Kozachenko’’

No-Fault Fight Continues...................................................
WalkandRoll.Com/Attendant.............................................
BCCPD Sponsors IF Projects
Individualized Funding Project.........................................
Community Living Advocacy Project...............................
Consumer Choice News.....................................................
Individualized Funding: An International Overview
by Brian Salisbury and Tim Stainton Ph.D.........................
Assisted Suicide Debate Continues
by Nat Hentoff.......... ..............................................................
Where There's a Will, There's a Way
by Mary Lambert....................................................................
Netherlands Study Looks at Restrictive Measures
by Gerda Wever.....................................................................

Research
Eleanor Pasholko •
Data Input
Teresa Kubaseck-Berry

Proofreader:?
Eleanor Pasholko
Pushpa Patel; '
Carol Dixon
Steve Wong
Mark Rogen

Voice Recording
Eleanor Pasholko

s

N

e

w

s

&

N

ot

i

c

e

9

10
18

26
s

Partial funding for Transition is

provided by Human Resources
Development Canada. Thanks also to
our sponsors, advertisers, members

and subscribers.

we welcome articles, graphics,
creative writing, et al (maximum
length for articles should bel000
words. The editors reserve the
'right to edit material.
Please send material to;
Transition Publication Society,
c/o BC Coalition of People with
Disabilities.
204456 W. Broadway
Vancouver, Bc V5Y1R3
875-0188 •TTY 8754835
fax875^227

Canadian Publications Mail
Product Sales Agreement No. 0607148

Aging with Spinal Cord Injuries Forum.........................
Seminars Explode Body Image Myths...........................
International News...............................................................
Mentoring Project Helps Students..................................
New Service for Drivers with Disabilities.....................
Consumer Evaluation of Accessible Housing............
More Cutbacks from MHR.................................................
Resource for Deaf Women................................................
Classified Ad.........................................................................

9
14
15
17
21
24
25
29
29

Editorial Note: The views and opinions expressed within the pages of Transition are
not necessarily those held by the total membership or Board of Directors of the B.C.
Coalition of People with Disabilities. The material presented herein is meant to be
thought-provoking and to promote dialogue. Transition is your opportunity to share
information and to introduce issues which you feel should be brought to the attention of

the disabled community and the general public. It is also an opportunity for disabled
individuals to display creative talent.

March/April 1997

Transition

No-Fault Coalition
Meets with Premier
The following letter was sent
to Premier Glen Clark March
27, 1997 following a meet­
ing with the representatives
of the Coalition Against No­
Fault in BC.

2.

Dear Mr. Premier:

On behalf of the Coalition
Against No-Fault in BC we
would like to thank you for
taking time to meet with us.
We have since discussed
the issues raised in our
meeting with the Steering
Committee of the Coalition
and can confirm our mutual
agreement in regard to the
following:
1. The Coalition will par­
ticipate in discussions
with your staff to de­
velop a third option to

page 2 • March/April 1997

3.

reform the auto insur­
ance system.
Your office will assist
the Coalition in obtain­
ing access to all finan­
cial records from ICBC
which would be perti­
nent to the development
of a third option. This
access needs to be
available as soon as
possible.
Assuming that good
faith is demonstrated by
the Coalition and Gov­
ernment, respecting the
above-mentioned mat­
ters, the Government
will involve the Coalition
in a review and discus­
sion of any new legisla­
tion and regulations

prior to their introduc­
tion.
It is clear that there are
key issues outstanding
which will require consider­
able attention during future
discussions. However, we
are confident that reforms
can be made which will
improve road safety, main­
tain the rights of accident
victims, keep premiums at
their current level this year
and stabilize them in future
years.
Thank you for your
assistance with this impor­
tant matter.
Sincerely yours, Gordon
Adair, CA
Coordinator, Coalition
Against No-Fault in BC ~

Transition

by Paul Gauthier

Editorial

Tis issue of Tranh
sition is devoted to
I a "new" generation
of service delivery
systems influenced by peo­
ple with disabilities and
their families. The terminol­
ogy used to describe the
method of service delivery
varies. It may be called
“individualized funding” or
“direct funding,” “autono­
mous planning” or “broker­
age." Despite the emphasis
on “funding” or “plarming”
in the terminology, the heart
of the matter is power and
empowerment for the indi­
vidual.
Individualized funding is
such a common sense idea
that the best way to de­
scribe it may be to point out
the lack of sense in the
block-funding system.
In block funding, vari­
ous divisions of government
ministries contract with
profit and non-profit agen­
cies to provide services to
individuals based on their
disability. The needs and
plans that the individual
may have for her or his life
are rarely taken into ac­
count. It is up to us to nego
tiate for our needs with
these government divisions:
with Continuing Care for
personal assistance hours
at home, with the Vocational
Resources Society for hours
at work or school and trans­
portation to and from work
or school, etc. In each case,
the money goes from the
ministry delivering the

service to the various agen­
cies who tell us what they
will consent to do.
So we get services we
don't need or want, while
solutions which are less
expensive and more appro­
priate are refused because
they do not fit in with what
the ministry has contracted
for or the agency is prepared
to deliver. It is common
practice for considerations
of economy of scale, or the
cost of training or supervi­
sion to be primary consid­
erations above the needs of
the individual.
At the age of nineteen, I
became intensely aware of
the difference between this
approach and a more per­
son-centred one, and how
crucial this difference is in
planning one’s life. I had
carefully planned the proc­
ess of moving from a chil­
dren’s group home to my
own apartment. For me, this
was a breathtaking adven­
ture—both a risk and a bolt
for freedom. I had people I
trusted who knew my needs
and who had agreed to be
my personal assistants, at
least for the transition pe­
riod until I “had my act
together”. As I began to lay
out my transition plan in
detail, I was brought up
short by the director of the
home support agency that
Continuing Care was about
to contract to provide my
services. She informed me
that the agency would sup(continued on next page)
March/April 1997 • page 3

Transition

(Editorial, coat'd from previous page)
work, no assistance while
ply my assistants from their
out on the town, etc.
staff.
The agency was deter­
I was told the following
mined and felt justified to
“rules." There would be a
deliver services in a way
fixed schedule that would be
that was next to useless to
the same for all days of the
me, despite the fact that
week. For special occasions,
what would be useful was
it “might” be possible to
no more expensive, just
make some changes “de­
different.
pending on the require­
Fortunately, through
ments of other clients and
persistence and determina­
the availability of staff."
tion I was able to discover
These changes would have
that service users had be­
to be made through the
gun the process of trying to
agency office. Direct com­
And concessions on these
munication between
matters. The first step was a
assistants and clients out­
program called the En­
side of work hours was
hanced Consumer Participa­
forbidden, and services had
tion Model (ECPM) which
to be delivered in the home.
allowed a small amount of
This meant no assistance at
control to the consumer—at
school, no assistance at

page 4 • March/April 1997

least allowing her or him the
right to recruit suitable
assistants and to have
direct contact with them,
the right to set work sched­
ules for the assistant, and
the right to arrange for the
services to be delivered in
the community, although
the employer of the assist­
ant was still the agency.
These concessions made
an amazing difference to
those people with disabili­
ties who were able to take
advantage of them. The
success of the ECPM be­
came a stepping stone for
the development and ac­
ceptance of Choices In
Support for Independent
Living in which the con­
sumer employs personal
assistants directly using the
same amount of funds. Even
though the costs are the
same, there is a huge differ­
ence in the amount of flex­
ibility allowed to an indi­
vidual to become a student,
an entrepreneur or to secure
a job. Not surprisingly, this
model received raves from
the clients.
Services need to become
more accountable to people
using them. This Transition
looks at people’s experiences
with individualized funding
and the ways that this
movement is gaining mo­
mentum. ~

Transition

WALKANDROLL.COM/ATTENDANT

The Individualized Funding
Project of the BCCPD has
established an Internet
personal attendant pool.
This pilot project aims
to enable people with dis­
abilities who are using
individualized funding to
access personal attendants
who are available for work.
The idea for the Internet
linkage came from a meeting
in November, 1996 of people
who are using individualized
funding. Participants at the
meeting expressed a need
for ready access to personal
attendants, especially for
back-up or emergency as­
sistance. People realized
that as individuals they
knew of attendants who
were available for work and
that, if everyone pooled
information, it could be a
valuable resource for people
using individualized fund­
ing.
So a web page was
developed through the Com­
munity Resource Network at
WalkandRoll.com/attendants. Then a questionnaire
was designed that outlined
the abilities, experiences
and availability of people
who want to be attendants.
The information from these
questionnaires will be en­

tered into the Web page.
People who are in need of
attendants can visit the
Internet site and look for a
candidate(s) suitable for
interview.
It is important to note
that WalkandRoll.com/
attendants is a source of
information that both per­
sonal attendants and people
with disabilities who need
their services have to use
with care and responsibility.
The Internet resource is not
recommending or screening
people—it is just linking
people to one another. It is
not a substitute for good
interviewing or reference
checking. That is the re­
sponsibility of its users.
BCCPD’s Individualized
Funding Community Devel­
opment team will be evalu­
ating the effectiveness of the
Internet Attendant pool after
a few months of use. The
team will also be coordinat­
ing an Internet buddy sys­
tem that teams up people
who are not on the Internet
with those who are, so that
the information can be
available to all who want it.
Contact Roger Jones at
Walk and Roll or Christine
Gordon at BCCPD for more
information. ~

McMurchy Early Retirement
At the end of March, the BC­
CPD said goodbye to one of its
long-time supporters and
employees. Well, not good-bye
exactly-Geoff McMurchy will
continue to keep his hand in
Transition, designing covers,
and advising on the Editorial
Committee and Transition
Board.

Geoff has worn many hats over
the years, including Board
member, on-call graphics and
computer guru, and staff mem­
ber on numerous projects, most
recently with the AIDS and
Disability Action Program.
BCCPD will miss Geoff's many
talents and we'll all miss his
presence around the office. We
wish him all the best in his
plans to expand his al ready­
considerable artistic talents.

March/April 1997 • page 5

BCCPD Sponsors IF Projects
The BCCPD has recently started up two projects geared toward
spreading the word about Individualized Funding-both within disability
communities and within the broader communities that affect policies
and services.

The Individualized Funding Community Development Project
The B.C. Coalition of People
with Disabilities, with a
grant from the Ministry of
Children, Youth and Fami­
lies, is sponsoring a commu­
nity development project to
promote individualized
funding. The project is beingI
facilitated by Christine
Gordon, Paul Gauthier,
Mary Lambert and Brian
Salisbury.
In British Columbia,
people with disabilities have
had some opportunities to
use Individualized funding
through the Choices for
Support in Independent
Living (CSIL) program, the
three-year Community
Brokerage Services Society
(BCSS) project and microboards. Their experience
with all of these programs
has been overwhelmingly
page 6 • March/April 1997

positive. Building on the
strength of this experience,
the Individualized Funding
Community Development
project will work to Increase
people’s knowledge and
skills to use individualized

Individualized Funding
PROjects
funding. It will also try to
reduce some of the barriers
to greater acceptance of
individualized funding
within government, service
provider agencies and la­
bour unions.

Some current activities
of the project include:
• Monthly meetings of
consumers and per­
sonal supporters.
• The development of a
web page site on the
Internet listing personal
attendants who may be
available to work for
people with disabilities.
• Planning for a June
conference that will
promote individualized
funding.
• Providing information
and assistance to con­
sumers who are using
individualized funding
or would like to.
If you would like to
become involved in this
project, please call Christine
Gordon or Mary Lambert at
BCCPD. «

TRANSITION

c
»•

BCCPD is sponsoring an individualised funding confer­
ence this June. We are sending invitations to 125
individuals in the community who:
•
•
•

conference

have used or would like to use individualized
funding
are leaders in or promoters of individualized
funding
represent consumer groups, government, labour
unions and service providers

The objectives of the conference are to:
•
•

•

•

enable people with disabilities and their personal
supporters to learn about individualized funding.
promote the development of a network for users of
individualized funding to share information and
provide support.
increase knowledge and understanding of individu­
alized funding in the government, labour unions and
service provider sectors.
promote individualized funding by developing action
pians for implementation.

Day One • Forum for Consumers & Supporters
The program will include sharing stories of experiences
with individualized funding; skill-building workshops;
discussion of the values and principles of individualized
funding; and, development of a consensus statement
on individualized funding.
Day Two • Forum for Government & Service Providers
The program will include a history and international
perspective on individualized funding; experiences with
individualized funding in B.C.; discussion of the consen­
sus statement from Day One; and, an examination of
the roles and responsibilities of government and
service providers.

If you would like information on the conference, con­
tact the BCCPD office.

June 8 and June 9,1997

Community
—Living
-Advocacy
—Project
by Jan Taylor

The last issue of Transition
included an announcement
about the Community Living
Advocacy Project. This arti­
cle will tell you more about
the Project, including our
background, our services,
our future plans and how to
reach us if you want to
know even more.
The Community Broker­
age Service Society pilot
project (which provided
individualized funding and
autonomous planning to 20
adults with developmental
disabilities) closed last
Spring. Two projects were
then developed to try to
continue to build support
for individualized funding.
Both projects were approved
for funding and began work
this past Fall. The projects
(continued on next page)
March/April 1997 • page 7

T

R

A

(Community Living Advocacy
Project, cont'd from previous
page)
are funded by the Ministry
for Children, Youth and
Families and are adminis­
tered by the BCCPD.
The Individualized
Funding and Autonomous
Planning Project (IFAP),
facilitated by Christine
Gordon, works with service
providers, unions and gov­
ernment to stimulate dis­
cussion about individualized
funding. This project is
described on page 6.
The second project, the
Community Living Advocacy
Project (CIA) is based at the
Coalition’s New Westminster

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1 (800) 663-4703
Fax: (604) 253-5586

page 8 • March/April 1997

N

S

I

T

office. This project is de­
signed to help individuals
and their personal networks
advocate for access to a
range of services. Working
closely with the IFAP
project, the CLA Project is
building support for indi­
vidualized funding within a
broadly-based network of
families.
Working with the Com­
munity FamllyLink Society,
CLA’s first initiative has
been the development of a
framework for service and
support for adults with
developmental disabilities.
This framework is based on
a commitment to individual­
ized funding. We have been
meeting with families to
discuss and refine the
framework. Through a series
of small, informal discus­
sion groups, as well as a
couple of larger meetings,
we are raising awareness
about individualized funding
and its benefits for consum­
ers. After more consultation
from families around the
province, we hope to present
our framework to the Minis­
ter of Children, Youth and
Families.
We have also been meet­
ing with people with physi­
cal disabilities who share
our interest in individual-

I

O

N

ized funding. We have had a
good exchange of experi­
ences and ideas, and are
encouraged to learn that
support for individualized
funding is growing across
the disability community.
Through this process, we
are developing a set of fun-documental
principles for
individualized funding.
We are also looking for
other ways to share infor­
mation about individualized
funding, including the use
of e-mail and the Internet,
and speaking to allied or­
ganizations, such as the
Autism Society of BC.
A conference on indi­
vidualized funding is
planned for early June in
Vancouver. This conference
will bring together individu­
als, family members, un­
ions, service providers and
government to talk about
the implementation of indi­
vidualized funding.
If you haven’t been able
to come to one of our meet­
ings yet, but would like to,
or if you would like a
speaker to come to one of
your group’s meetings,.
please give us a call at 5250701.
Jan Taylor is Coordina­
tor of the Community Living
Advocacy Project. «

BC REHAB

Aging with
Spinal Cord
Injuries
Issues for People
with Long-term
Injuries

This is a forum for consumers, families, caregivers and health
care providers. Discussions will cover issues surrounding the
physical, functional, emotional and social aspects of aging with a
Spinal Cord Injury. Practical solutions for preventing and
managing the potential changes that come with aging will be
identified.

May 20,1997 (8:00 a.m. - 4:30 p.m.)
Location: Best Western Richmond Inn
7551 Westminster Highway
Richmond, BC

Fee: $95.00
(lunch and refreshments included)

Contact: Michelle Webster
Phone: 604-737-6460 • Fax: 604-737-6359

Consumer Choice News
Consumer Choice News is a
publication of the National
Institute on ConsumerDirected Long-Term Serv­
ices, a partnership between
The National Council on
Aging, Inc. (NCOA) and the
World Institute on Disability
(WID). The mission of the
Institute is to enhance
consumer-directed choice in
long-term services through
education, training and
research.
The Institute is housed
at NCOA, a private, non-

profit organization founded
in 1950 that serves as a
resource for information,
training, technical assist­
ance, advocacy and leader­
ship in all aspects of aging.
WID, a non-profit organiza­
tion founded in 1983 by
leaders of the Independent
Living Movement, serves as
a centre for the study of

public policy on disability
and independent living.
Consumer Choice News
is available free of charge.
To subscribe, please fax The
Editor at 202-479-0735, or
write to NCOA, 409 Third
Street SW, Washington, DC
20024. «

March/April 1997 • page 9

Transition

Individualized
Funding
---------------------------by Brian Salisbury and Tim Stainton Ph.D.
Since the 197O’s, many
users of community services
that support people with
disabilities have come to
realize that citizenship, so
much valued by
non-labelled individuals,
remains an elusive dream.
The root of the problem is
the service system itself
which lacks accountability
and is inflexible and unre­
sponsive when it comes to
meeting unique individuals
needs.
In response, many
people with disabilities and
their advocates have begun
to question the very manner
in which required services
are developed and delivered.
In short, government’s
direct provision of services,
or its use of block funding of
non-profit and for-profit
organizations to provide
services in response to
“categorical” needs, are seen
as Increasingly problematic.
People with disabilities
are now demanding that
funding used for
disability-related services/
supports should be provided
to them on an Individualized
basis, using a mechanism
known usually as direct or
individualized funding. This
funding is then used by the
page 10 • March/April 1997

individual to purchase only
those services and supports
that are best suited to meet­
ing their personal needs.
Thus the person served
determines the actual pa­
rameters of service provi­
sion.
Many people believe that
if people with disabilities are
empowered to have mean­
ingful decision-making
opportunities, service will
necessarily become more
flexible, responsive and
accountable. Indeed, a truly
“demand driven” paradigm
means that professionals
and service providers must
listen and respond to what
people want if they expect to
continue to provide services.
Individualized funding
began in BC in 1976 with
the creation of the Commu­
nity Living Society. It was
the vision of families, anx­
ious to deinstitutionalize
their sons and daughters
from Woodlands, to use
individualized funding and
the services of an independ­
ent planner (referred to as a
broker), to help their family
members return to the
community. This small
development, while an
anomaly at the time, has led
to a major social policy

thrust that focuses on
transforming people with
disabilities from passive
service recipients to empow­
ered decision makers.

Many people
believe that if
people with
disabilities are
empowered to have
meaningful
decision-making
opportunities,
service will
necessarily become
more flexible,
responsive and
accountable.
Efforts to implement
individualized funding are
underway throughout the
world, although some pilot
projects are “revisionist”
because they do not meet
important operational crite­
ria (funding based on the
person’s unique circum­
stances and needs, or fund­

Transition

ing portability that enables
services to be purchased
from a variety of sources).
However, there can be no
doubt on one point. The “cat
is out of the bag”—people
with disabilities understand
that there are now ways to
truly gain control over how
services respond to their
needs.
Some of the major ini­
tiatives are listed below.
• In Great Britain, the
recently passed Community
Care (Direct Payments) Act
1996 will enable local Social
Service Authorities to pro­
vide funding directly to
individuals with physical
and intellectual disabilities,
and the elderly. The Bill’s
passage followed an exten­
sive consultation process
and represents the first time
anywhere a government has
passed legislation for indi­
vidualized funding. While
implementation is likely to
be more restrictive than
many would like, the Bill
has served to galvanize
various disability move­
ments in the United King­
dom and gives hope to many
of “full community inclu­
sion”.
(continued on next page)

BC Association of
Community Care

ANNUAL CONFERENCE
Teamwork for Tomorrow
]une 2 - 3, 1997
The Grand Okanagan Lakefront Resort and
Conference Centre
Kelowna, British Columbia
For more Information contact
Jackie O'Brien
BC Association of Community Care
Suite 300 - 1333 West Broadway
Vancouver, BC, V6H 4C1
Tel: (604) 714-1225
Fax: (604) 714-1226
E-mail: bcacc@mindlink.bc.ca

March/April 1997 • page 11

Transition

(An International Perspective, cont'd from previous page)
include a brokerage-type
• In BC, Microboards and
component typically help
Choices for Support in
the person with a disability
Independent Living (CISL)
to establish (or link with)
exemplify how
advocacy, accounting, staff
decision-making control
recruitment, and training
over funding has effectively
and management support
been placed in the hands of
services. This helps people
people with disabilities.
to make the most of their
Microboards are non-profit
individualized funding with
societies created by indi­
a minimum of bureaucracy
viduals and their support
and hassle.
networks in order to receive
• In the US, the World
funding that has been nego­
Institute on Disability, in
tiated directly with govern­
partnership with the Na­
ment. Each society negoti­
tional Council on Aging, is
ates directly with service
conducting a range of re­
providers or support staff.
search projects that focus
In the CISL project, approxi­
on increasing consumer
mately 240 individuals with
direction/control in home
physical disabilities negoti­
and community-based serv­
ate individually with Long
ices. Elsewhere in the US,
Term Care within the Minis­
the Robert Wood Johnson
try of Health for individual­
Foundation has just com­
ized funding to purchase
pleted an independent
attendant care services.
evaluation of the
CISL is similar to a scheme
“Monadnock Project”, a
operating in Manitoba and
self-determination demon­
(he Direct Allocation pro­
stration project for about 40
gram in Quebec, as well as
people in New Hampshire.
many others operating
The preliminary data is very
throughout the United
positive in all areas, includ­
Slates and Europe.
ing personal and financial,
• Along with these changes
with individual budgets
in how funding is allocated,
averaging between 12 and
a number of “support” serv­
15% lower than prior costs.
ices have also developed to
The RWJ Foundation has
both simplify and enhance
also recently awarded 18
people’s use of individual­
grants to begin Self Deter­
ized funding. Projects which
page 12 • March/April 1997

Also, various
government
departments claim
to utilize
individualized
funding and
planning, although
closer analysis
reveals that such
approaches are
quite similar to
traditional case
management.
mination/Individualized
Funding projects through­
out the United States, with
the Massachusetts, Texas
and Hawaii projects stand­
ing out for their emphasis
on minority populations.
Many other initiatives
underway also claim to
implement individualized
funding. Unfortunately,
while their efforts to in­
crease empowerment are
well-meaning, the concept is
nevertheless being compro-

Transition

mised. For example, some
projects incorporate indi­
vidualized funding/planning
within a community agency
that has sole responsibility
for meeting the needs of an
entire group of disabled
consumers. While propo­
nents argue that “one stop
shopping” represents a
major step forward, the
question must be asked if
such a model is significantly
different to current
block-funded service ar­
rangements. Also, various
government departments
claim to utilize individual­
ized funding and planning,
although closer analysis
reveals that such ap­
proaches are quite similar to
traditional case manage­
ment.
So, while many claim
that they are using an indi­
vidualized funding model, it
would seem that some ini­
tiatives have merely incorpo­
rated cosmetic, rather than
substantive, changes.
This article has outlined
only a few of the individual­
ized funding initiatives
underway in the world. The
reader should be clear on
one point, however: interest
in individualized funding is
growing rapidly as people

with disabilities seek more
meaningful ways to ensure
that they have control over
their lives.
Brian Salisbury works
as a disability policy consult­
ant and contract Instructor in
Human Services at Kwantlen
University College. He previ­
ously worked as a service
broker with the Community
Living Society and Commu­
nity Brokerage Service Soci­
ety. He has consulted exten­
sively internationally on
individualized funding and
service brokerage. Anyone
interested in joining an
international email discus­
sion group on individualized
funding can contact Brian
(bsausbur@direct. ca).
Tim Stainton is a lecturer
at the University of Wales,
Swansea. He received his
Ph.D. from the London School
of Economics. He was one of
the first service brokers with
the Community Living Soci­
ety in Vancouver. His book
Autonomy and Social Policy
deals with issues of disabil­
ity rights and the theory
behind individualized fund­
ing.

ANECDOTES

answers

Cartoons

musing

PONDERINGS

QUESTIONS
RECITALS

SOLILOQUYS
SURPRISES...

March/April 1997 • page 13

TRANSITION

Arthritis
Relief
Join an ASMP class in your community.

879-7511

Learn practical ways to control
pain, fatigue and depression.
Participate in the ARTHRITIS
SELF-M ANagement
PROGRAM. ASMP takes only a
few hours each week for six weeks.
the cost is minimal, and the
benefits last a lifetime!.

(local 301 or 437) lower mainland

1-800-667-2847
TOLL FREE

CALL 10 AM to 4 PM MONDAY to FRIDAY

Learning that fits
your lifestyle
The Open University and Open College's Disability
Services Office can help students with disabilities earn a
fully accredited education. Study on your time, at your
own home, and at your own pace.
Course options range from high school
completion and adult basic education
courses to college and university courses.

For more information,
call 43D3238 in the Lower

Mainland, TTY 43 D3360,
or D800-6634663 in BC.
E-mail: dsoserv@ola.bc.ca

page 14 • March/April 1997

I

Seminars Explode
Body Image Myths
Does the woman who dies the
thinnest with the least wrinkles
win?
Joy Cohen, a Vancouver-based
Fitness and Wellness Consultant,
is presenting a series of seminars
addressing the often painful
subject of body image and how
closely held notions about “fatness”
can create barriers to well-being
and achievement. From March to
June, 1997, Cohen, in association
with Wellness Management
Research consultant Denise
Hodgins and Registered Dietitian
Sandra Turnbull, will offer new
awareness, important guidelines
and practical help to a variety of
groups concerned with weight loss,
health and body image.

Upcoming seminars include:
• Weight Loss Mental Floss:
Stopping the Diet Yo-yo
• Hey, Fat Kid!
• Food, Fat, Fitness and Children:
Focus on Eating Disorder
Prevention
• Self-Esteem for All Sizes
Seminars are $35 each and are
held at the offices of Cohen &
Associates, #222 - 2628 Granville
Street, Vancouver. To register, call
(604) 730-1020. «

Transition

United States
The latest US survey of
members of support groups
for people with genetic dis­
orders has found that 43
per cent of those surveyed
had experienced genetic
discrimination.
The survey, by Virginia
Lapham of Georgetown
University in Washington
DC, found that employers,
health insurers and life
insurers all discriminated.
The report of the survey
in Science magazine quoted
a number of examples of
discrimination.
In one case, a man was
refused a job because, at
the pre-employment medi­
cal, it was discovered that
he had Klinefelter’s syn­
drome, although there was
no suggestion that this
might affect his ability to do
the job. A company official
admitted that this was the
reason the man was re­
jected, but said that the
company would deny it, if
asked.

Home Swap Register
Travelling to other areas of
your country—or to other
countries—can be difficult
because of the lack of acces­
sible hotels and other holi­
day accommodation.
This means that even
those who could afford to
take a holiday often miss
the chance to explore and
see other parts of the world.
The non-profit Special
Families Home Swap Regis­
ter enables people to swap

their home in a two-way or
one-way swap for holidays
or breaks at any time of the
year.
Subscribers get a quar­
terly register of homes avail­
able, The service started out
with provision just in the
UK, but has recently begun
to provide worldwide infor­
mation.
The homes all have
different facilities for people
with physical impairments,
full details of which are
included in the register.
This enables subscribers to
facilities to suit them.
Contact:
Special Families Home Swap
Register,
Erme House, Station Road
Plympton, Plymouth
Devon PL7 3AU
United Kingdom
Web site: http://
members. aol. com/
sfhomeswap / trust. htm
(Courtesy of Disability
Awareness in Action, March
1997)

March/April 1997 • page 15

Transition

helping agencies depend on government
funding and fear funding cuts. They need an
independent advocate like the Coalition to lobby
for their interests.

The B.C. Coalition of People with Disabilities is a
province-wide, non-profit organization run by and
for people with disabilities. We are an umbrella
group representing all people with disabilities and
our strength comes from membership support.

•

Will you join the Coalition today and help build
the voice for people with disabilities?

policy research and development on areas of
concern to you.

•

membership voting rights, if you are a person
with a disability.

As soon as you begin your membership, you'll
enjoy a number of benefits;

•

an organization that can lobby the government
on behalf of people with disabilities-too many

If you would like more information on BCCPD,
please feel free to contact the office at the address
below, or call (604) 875-0188.

Membership Acceptance Form
I accept your invitation to join the BC Coalition of People with Disabilities.

Membership Fee (groups and individuals)
$10
□ New Membership or

□ Renewal?

All memberships are renewable annually
from the date of application.

□ Voting Member or
(self-help groups where at
least 51% of members
have disabilities or a

person with a disability)

□ Non-Voting Member

members)

Voting and Non-Voting Members: All individuals and groups are welcome to become members of
BCCPD. However, voting rights are limited to people who have a disability and groups composed of a
majority of people with disabilities (i.e. Self-help groups).

Mentoring Project
Helps Students
The following is an article by Kirsteen Main, a high school
student who was matched up with a mentor through the Neil
Squire Foundation's Mentoring Project called “Preparing for
Success”. A panel of people with disabilities who are wellestablished in their careers talk with young people who have
disabilities about the importance of school and share their
personal experiences regarding school, choosing a career and
finding employment.
I met Melinda through
talk with her, and she al­
the Neil Squire Foundation
ways encourages me to
and she is my mentor. I
follow through. 1 want to be
meet with her every two
like Melinda when I am
weeks at her group home,
older, and I hope I can be a
and we talk about my life
mentor to someone else one
and how I am doing. I really
day. I feel like having
look forward to meeting with
Melinda for a mentor has
Melinda. 1 feel like she is a
increased my confidence in
really good friend to me and
myself. I also feel like 1 am
I am lucky to be able to go
learning more about myself
see her. I can say exactly
and my strengths.
what I am going through
I like going to visit
and Melinda can under­
Melinda a lot and I think 1
stand me. 1 can learn a lot
am lucky to have such a
through my experience with
good friend. 1 know 1 still
Melinda, and I hope Melinda
have a lot of work to do on
feels that she is learning
myself, but 1 know I can
too.
trust Melinda to help me.
1 think about doing
Maybe one day 1 can return
challenging things when I
the favour to someone else.

CHRC Reports Poor Year
for Disability Rights
By any measure of progress, 1996

was a disappointing year for people
with disabilities, says the Canadian
Human Rights Commission.

In its 1996 Annual Report,
released in March by Chief
Commissioner Michelle FalardeauRamsay, the Commission urged the
federal government to introduce a

long-awaited amendment to the

Canadian Human Rights Act requiring
employers and service providers to

accommodate the special needs of

people with disabilities.

The Commission also expressed
concern that fiscal restraint at all

levels of government has had a
disproportionate effect on people with

disabilities.
“A few relatively isolated
breakthroughs aside, this was a year
of almost complete stagnation and, in

some ways, even of losing hard-won
ground,” the report says. “When public

transport, social housing, or hospital
budgets are cut, the effects are felt

most severely by those most in need

of such services.”

Melinda
Before I met you I was not
understood by others.
However, now I am able to
be understood.
You feel what Ifeel
You see what I see
You hear what I hear
You laugh when I laugh

On employment issues affecting

You cry when I cry
Real people seldom come
into my life
But you are real
For each thing that you are
to me.
And for providing me with
your friendship,
I thank you.

people with disabilities, the
Commission reports little progress.

“Unless there is a more concerted

drive to improve the hiring and
retention of people with disabilities

across the board, the situation seems

fated to go from bad to desperate.”
For more information, contact

Donna Balkan at (613) 943-9120. ~

March/April 1997 • page 17

Transition

Assisted Suicide Debate Continues
When Sue Rodriguez was in the courts fighting for the legal
light to end her life when she chose, the BCCPD was there as
a supporter. The BCCPD took the position that legislation,
including strong safeguards against abuse, was needed to
give people with severe physical disabilities this right. The
following article offers another view.

by Nat Hentoff
Ten years ago, before Dr.
Jack Kevorkian became a
Halloween mask, I went to a
conference in Minnesota of
disability rights activists.
Much of their anger was
directed at the American
Civil Liberties Union which
some of them had previously
regarded as an ally.
The Southern California
affiliate of the ACLU had
gone to court to establish
the right of a woman with
cerebral palsy and other
disabilities to get help in
committing suicide. The
ACLU did not succeed, and
its client, having recovered
from clinical depression,
decided she did not want to
die after all.
Since then, the Michi­
gan and Florida affiliates of
the ACLU have vigorously
supported assisted suicide,
and the national office,
being politically correct in
these matters, goes along.
Now, at last, the ACLU does
seem to have won this battle
for death-on-demand. Both
the 9th and 2nd Circuit
page 18 • March/April 1997

Courts of Appeals have
ruled not only that assisted
suicide is legal, but that a
doctor may prescribe pills
for the despairing patient
and, under some circum­
stances, directly administer
a lethal injection. That is,
the doctor can commit an
act of euthanasia.
Of all those opposing
these lethal court decisions,
the most apprehensive and
enraged are various disabil­
ity rights groups. An alli­
ance of the dissenters has
created a new force. It is
called Not Dead Yet. One of
the organizers is Woody
Osburn, a full-time civil
rights specialist with the
Pennsylvania Coalition of
Citizens with Disabilities. He
is a quadriplegic. “Ameri­
cans with disabilities,” he
and the others say, “don’t
want your pity or your lethal
mercy. We want freedom.
We want life. We, the people
living with severe disabilities
and chronic illnesses, are
the most affected by as­
sisted ‘suicide.’

“Our deaths are being
viewed as more desirable
than providing services such
as in-home care that would
allow us to live as free and
independent citizens. In­
stead, many of us are caged
in nursing homes and other
institutions or dependent on
a family member—the two
main circumstances that
lead to assisted ‘suicide’.”
Not Dead Yet is circulat­
ing a prescient, ominous
statement by Dr. Kevorkian
on the social value of as­
sisted suicide. He presented
it to a Michigan circuit court
in 1990. Said the good
doctor: “The voluntary self­
elimination of individual
and mortally diseased or
crippled lives, taken collec­
tively, can only enhance the
preservation of public health
and welfare.”
Those who are not dead
yet are afraid that much of
the general public
uncritically assumes that
the “voluntary” part of
Kevorkian’s prophecy will be
exactly that. After all, not a
few of us do not like to look
at—or think about—’’defec­
tive” people and believe that
the severely disabled prob­
ably do wish, in their heart
of hearts, to be “liberated”
by suicide.

TRANSITION

Through the years, in
hospitals, some of the disa­
bled have been told, one
way or another, that their
“quality of life” is hardly
worth their effort to preserve
it, let alone the efforts of
their doctors or the cost to
society. And with some of
the disabled, that assess­
ment of their lives can be­
come persuasive.
One of the witnesses
during a recent hearing on
assisted suicide by the
House subcommittee on the
Constitution was Diane
Coleman, executive director
of the Progress Centre for
Independent Living. Be­
cause of spinal muscular
atrophy, she has been a
wheelchair user since the
age of 11.
She told the subcommit­
tee about court decisions
that over the past decade
have allowed life-sustaining
treatment to be withdrawn
from persons “with substan­
tial, though not terminal,
disabilities. This trend is
rooted in pervasive and
largely unconscious societal
prejudices against people
with disabilities.”
In a publication called
Mouth—a lively and continu­
ally challenging advocate for
disability rights (61

Brighton St., Rochester,
N.Y. 14607-2656)—Joe
Ehman, a reporter with
disabilities, tells of his en­
counter with a prejudicial
view of his own “quality of
life”: “A few hours after
surgery, still delirious from
the anesthesia and from
post-surgical morphine and
Demerol, I had to hear from
a social worker who wanted
to force-feed me a Do Not
Resuscitate [order to the
doctors). I mustered my
strength and screamed, ‘I’m
30 years old. I don’t want to
die.’ Another nurse came
into the room. She asked
why I was verbally abusing
a staff member. I responded
that there was nothing in
arm’s reach to throw....”
Not dead yet.
(From The Responsive
Community, Volume 6, Issue
4, Fall 1996)

COMPREHENSIVE
UNIVERSAL
DESIGN SERVICES

Footnote
The Sun recently reported that the world's first law allowing
"voluntary euthanasia" was overturned in Australia. The law
was passed in July of 1996.
The bill to overturn the controversial law was passed in
a conscience vote by 38 votes to 33.
According to the Sun, "the moral, legal and medical
issues surrounding euthanasia became obscured by argu­
ments about states' rights."
Four people with terminal cancer had died under the law
since its July last year.
March/April 1997 • page 19

Transition

Where There's A Will,
There's A Way
by Mary Lambert

"Three years after
moving to Pearson
Hospital, I knew that
if I didn't move out
soon that I never
would."

page 20 • March/April 1997

Whenever I face something
new or challenging, I hear
an echo from my past of my
mother saying, “where
there’s a will, there’s a way”.
Looking back on my life, I
realize this to be true.
In 1977, 1 moved from
my home and family in the
Okanagan to Pearson Hospi­
tal. Like most teenagers, I
had dreams and aspira­
tions. I wanted to graduate
from high school and con­
tinue on to university. The
school system in my small
home town was unable to
meet my educational needs,
so I moved to the big city. A
rehab counsellor, who was
advising me and my par­
ents, told us that I could
move into Pearson Hospital
for a few weeks until a
group home became avail­
able and I could attend a
regular high school.
What I was promised
and what I got were two
different things. When we
went to see Pearson Hospi­
tal, my family and 1 were
told that everyone on the
ward 1 would be living on
went to school and worked.
But when I moved in, I

found there were only four
of us out of the 36 “patients”
who actually went to work
or attended school. Instead
of attending a regular high
school, I ended up in a
“special school room” in the
old Children’s Hospital, and
I waited three years for a
group home to be offered to
me.
Back then, I would
dream of the ideal living
arrangement for me, taking
into account my physical
disability. My dream was to
be living in my own home,
having a one-to-one attend­
ant that I would hire, work­
ing in a meaningful and
rewarding job, making a
reasonable income to sup­
port myself and to pay for
my attendants, and sharing
a fulfilling life with family
and friends.
This was virtually un­
heard-of and considered
totally unrealistic by most
people then. At that time,
there were basically three
options for someone like me:
living with one’s family,
living in an institution or
living in a group home (if
you were lucky).

Three years after moving
to Pearson Hospital, I knew
that if I didn’t move out
soon that I never would. I
could feel the effects of
institutionalization changing
me—my spirit was suffocat­
ing. My roommate and I
moved out of Pearson Hospi­
tal and rented a house
together where we shared
live-in attendant services
provided by an agency. With
Long Term Care paying for
our attendant care and with
the two shelter components
from our GAIN cheques, we
were able to afford a threebedroom house in East
Vancouver without further
subsidy. We both found
employment and were active
in the advocacy movement
for people with disabilities.
Approximately a year
later, my roommate and I
went our separate ways, so
we were each able to have
our own attendants. I was
getting close to my dream,
but I still hadn’t quite
reached it.
Over this time, I have
witnessed many changes in
Continuing Care, but too
many things have stayed the

same. When my roommate
and I moved out of Pearson
Hospital in 1980, we were
given four hours a day each
of attendant care by Long
Term Care. People moving
out into the community
today are still given just four
hours per day. It astounds
me how rigid the Continuing
Care system has been.

All along this journey to
Independence, I have asked
why 1 couldn’t manage my
own care, why I couldn’t get
the money and hire my own
attendants—but to no avail.
For years, I had been
doing what officially became
known as the Enhanced
Consumer Participation
(continued on next page)

New Service for
Drivers with Disabilities
Whether you’re going to visit
a friend, to work, or out for
the evening, driving is often
the main source of transpor­
tation. For many of us it
represents freedom, inde­
pendence and convenience,
but we must always remem­
ber safety.
We all know that good
driving decisions require
good sensory, perceptual,
cognitive (reaction time,
attention, decision-making)
and motor abilities. Difficul­
ties in any of these areas
can lead to problems on the
road.

If this is of concern to
you, you’ll be interested to
know about The Driver’s
Companion Group. We are a
team of highly-trained pro­
fessionals who have de­
signed a program called
Drive-Able® for drivers with
disabilities to help you
become the best driver
possible.
For more information
and a brochure call or fax:
Dr. Norm Forman or Carl
Wiese, The Driver’s Com­
panion Group Ltd., 416429-8511, (fax) 416-4297857. «
March/April 1997 • page 21

TRANSITION

(Where There's a Will, cont'd
from previous page)
Model (ECPM). Under the
ECPM program, an agency
would hire and be the em­
ployer for attendants that
individuals would recruit,
interview, train and super­
vise at the individuals’ own
expense. I had chosen not to
participate in this program
because it didn’t offer any
true improvement for me,
but it was and still is a
valuable option for many
other people.

Then, in 1994, Continu­
ing Care started a one-year
pilot project for direct fund­
ing called Choices in Sup­
port for Independent Living
(CSIL). After twenty years of
being involved with Con­
tinuing Care, I was given the
great opportunity to partici­
pate in this pilot project
where I receive funds from
the government to hire my
own attendants. My dream
has come true, except for

the bottom line
isn't just the profit line
At CCEC we are dedicated to
community economic development:

• all types of loans business, personal, lines of credit
• chequing and savings accounts
• travellers' cheques
• term deposits
• ATM card/credit card
• RRSPs
• mortgages residential and recreational property
• lower interest rates on loans
to co-ops and societies
Call CCEC at 254-4100

page 22 • March/April 1997

the part about making a
reasonable income to sup­
port myself and to pay for
my own attendants. In
today’s economy, it is very
difficult for everyone to get a
decent paying job. But I am
also prevented from seeking
full-time employment by the
per diem (user fees) that
Continuing Care charges. In
spite of this, I have found
meaningful and rewarding
work through volunteering
in many ways. I always
found enough work, just not
enough pay. Continuing
Care has been reviewing
their policies regarding
income calculation and
assessment of per diems. I
have the will (and always
have had) and now I’ll have
to wait and see if Continu­
ing Care has the way to let
me try to achieve the rest of
my dream.
As an advocate, I see
people struggling every day
for their basic needs to be
met. While I haven’t lost
sight of my original dream, I
know how easily it can all be
taken away. If I can help
just one other person along
their road to independence,
I will have accomplished
something money can’t buy
and no one can take away
from me. ~

Transition

dvocacy
without *

A
BURNOUT
BCCPD's Advocacy Access
Program has a project dedicated to
providing services to people who
wish to apply for or appeal applica­
tions for Canada Pension Disability
Benefits. We can assist people at
the application, first level appeal
and tribunal stages.
As part of this program, we
have developed a manual entitled
Advocacy Without Burnout/
Canada Pension Plan Disability
Benefits Appeal Kit.
This manual is a self-help
guide to help people appeal a
denial of CPP Disability Benefits.
The Appeal Kit discusses why
you need an appeal kit, how to
start an appeal and provides a
step-by-step process to help reach
a successful outcome.
If you like a copy of the
manual, or more information about
our program, please contact us at
the numbers below. Copies are
available for $5.00 per copy, plus
$2.00 for shipping and handling.
Our CPP advocates would
also be pleased to offer a work­
shop to explain how the Appeal Kit
may help your organization.
For information, call (604)
872-1278, Long Distance Toll-Free:
1-800-663-1278, TTY (604) 8758835, fax (604) 875-9227. -

BCCPD
Mission Statement
The BC Coalition of People with Disabilities was founded
upon the belief that:

•

people with disabilities want and are entitled to equal

opportunities in ail the activities and privileges that
other Canadians take for granted,

•

full inclusion of people with disabilities within our

communities is a fundamental necessity for a diverse,
productive and economically vibrant social
environment, and

•

people with disabilities have the right to expect
equality, fair treatment and respect.

Because of these beliefs, the purposes of the BC
Coalition of People with Disabilities are:

•

to use education, advocacy and special projects to
work toward the dissolution of the physical,

attitudinal and systemic barriers in our society that
deny us equal opportunities,
•

to provide a strong coherent voice for the cross­
disability communities in B.C.,

;

•

to share Information with and support other self-help

disability organizations with common goals, and
•

to carry out our mission and projects within a selfhelp model.

March/April 1997 • page 23

TRANSITION

Consumer Evaluation
of Accessible Housing
A big thanks is due to all
Transition readers who
participated in the CMHC
study of wheelchair accessi­
ble non-profit housing. The
study has now been com­
pleted and provides a com­
prehensive evaluation of
accessible design elements.
The 99-page report includes
photos, diagrams, discus­
sions, quotes from partici­
pants and recommenda­
tions.
The intent of this study
is for the findings and rec­
ommendations to serve as a
foundation to build better
housing for people with
disabilities tn the future.
One important factor for
designers to consider is that
the profile of occupants of
wheelchair accessible non­
profit housing units is
changing. This research
indicates a population
which is more physically
disabled than the “young
paraplegic” who is the model
for many of the standards.
Current trends, including
the aging population and
decreased use of institu­
tional care, are probably
contributing to a consumer
profile with different, and
page 24 • March/April 1997

The patio door behind the tenant is very appropriate. It has
a low bevelled threshold, and the door has a lever handle
with a large offset deadbolt that is easy to manipulate. This
door is much easier to open and lock, and the threshold is
easier to cross than a sliding patio door.

TRANSITION

possible greater, physical
requirements.
The research also
showed that, while many of
the existing guidelines are
appropriate and adequate,
in many projects they are
not incorporated into the
design or construction of
units designated as wheel­
chair accessible. In evaluat­
ing the units, problems with
compliance appeared to be
common. The report there­
fore recommends that the
mechanisms for ensuring

the provision of these fea­
tures be reviewed.
Anyone interested in the
report can obtain a free copy
from the Canada Housing
Information Centre in Ot­
tawa at (613) 748-2367. The
report is titled: Consumer
Evaluation of Wheelchair
Accessible Housing, and
was prepared by Options
Consulting in Vancouver.
You can also call Katherine
Taylor of Options Consulting
at 736-9225 for more infor­
mation. «

More Cutbacks from MHR
Effective March 31, 1997,
the new Disability Benefits
Program Act and Regula­
tions have been in place,
along with the rest of the BC
Benefits legislation. However
this piece of good news has
been overshadowed by
further welfare cuts.
The most important cut
for the disability community
has been the elimination of
the "unemployable" cat­
egory. The new "persons
with special needs" classifi-

cation that has taken its
place is extremely restric­
tive. Predictions are that
only one quarter of those
who are classified as unem­
ployable now will fit into the
new "special needs" cat­
egory. This means that
about 15,000 people will
likely have their welfare
cheques reduced by $96
from June 30/97 on. Also,
the application process has
been changed, so that it is
now necessary to fill out a

"special needs" application
which is sent to Victoria.
This appears to be
another example of the
Ministry of Human Re­
sources reducing the living
allowances of the poorest of
the poor. We'll give you
more details in the next
Transition, but if you want
more information in the
meantime contact as at
Advocacy Access 872-1278
or toll-free at 1-800-6631278. «

March/April 1997 • page 25

Transition

Netherlands Study Looks
at Restrictive Measures
by Gerda Wever
Over the last several years,
more emphasis has been
put on the privacy and
freedom of people who use
health care facilities in The
Netherlands. Several new
laws and regulations reflect
this growing interest. One of
these new laws (the Law for
Special Admission to Psychi­
atric Hospitals) protects the
autonomy of patients by
prohibiting the use of coer­
cion and restrictive meas­
ures, unless strict require­
ments are being met. This
law protects the autonomy
of patients in 24-hour
health care, such as psychi­
atric hospitals, hospital
psychiatric departments and
the institutions for people
with mental disabilities that
offer 24-hour care.
However, other facilities
such as day care or semiresidential facilities, are not
explicitly covered by the
legislation. This article
summarizes a research
project that looked at how
restrictive measures are
used in the excluded facili­
ties. The organization stud­
ied is a semi-residential
organization In The Nether­
lands for people with mental
disabilities that manages
page 26 • March/April 1997

small projects such as
daycare centres, sheltered
workshops and sheltered
homes. The research was
limited to the sheltered
homes only.The core ques­
tions in the research were:
• What is the nature and
frequency of restrictive
measures used in shel­
tered homes?
• What is the motive of
sheltered home
caregivers in using
restrictive measures?
• Are restrictive measures
used in compliance with
individuals' personal
plan?
There are two categories
of restrictive measures:
measures taken for reasons
of protection (that can be
coercive) and general rules
that regulate how people live
together, i.e. house rules. In
this article, “restrictive
measures” are being defined
as “all protective, coercive
and educational measures
used to restrict the indi­
vidual person (including the
use of behaviour influencing
medication). House rules are
rules that limit the indi­
vidual freedom of people in
order to make living to­
gether possible; they are

rules for general under­
standing of each other,
respect and good manners.
What is the nature and
frequency of restrictive
measures used in shel­
tered homes?
It was striking to note that
the most frequently used
"house rules" did not appear
to fit the definition of
houserules, but had the
character of individual
restrictive rules Some ex­
amples of Individual restric­
tive rules referred to as a
“houserule” are rules con­
cerning frequency of show­
ering, changing clothes,
shaving, etc; restrictions in
using rooms (including one’s
own room) and materials in
the house.
Most commonly used
individual restrictions are
the consumption of food/
drinks, controls on personal
dispensation of medication,
individuals being sent to
their room, restrictions in
leaving the house and re­
strictions in use of public
transportation. Financial
restrictions, taken under the
guide of "house rules" are
also common.

T

R

A

What is the motive of
sheltered home caregivers
in using restrictive meas­
ures?
The most frequently men­
tioned motives are: protec­
tion of the person and of
others; an attempt to influ­
ence the person’s behaviour;
and, practical reasons. This
last motive usually reflected
the personal values of the
caregiver, rather than any
clear "practical reason."
Are restrictive measures
used in compliance with
individuals' personal plan?
The percentage of measures
taken in general comply

N

S

I

T

closely what has been re­
corded in the personal file
(between 67% and 100%). It
is striking, though, that only
25% of the most radical
restrictive measures (sepa­
ration and being sent to
their own room) were taken
in accordance with the
person’s policy plan.
The results of this re­
search led me to recom­
mend the implementation of
a standard procedure for
houserules and regulations
for sheltered homes in The
Netherlands. Individual
rules imposed on residents
who need more regulation

i

O

N

and structure should be
entered into the personal file
as a general policy for this
person, and evaluated on a
regular basis.
Consistency in the
actions and decisions of the
caregiver was shown to be
lacking, i.e., 75% of the
radical restrictive measures
were not registered in the
person’s policy plan. The
fact that caregivers use
restrictive measures be­
cause certain behaviours
conflict with their personal
standards and values is also
an important issue.
(continued on next page)

CANADA'S INTERNATIONAL IMMUNIZATION PROCRAM

Beat the odds

4.

Canada is an important partner in the global effort Io help children in
’ the developing world heal the odds against six deadly, but preventable,
diseases. Today, 80 per cent of children under the age of one are protected
against measles, polio, tuberculosis, tetanus, whooping cough and diphtheria compared to only five per cent 20 years ago.
That translates into more than three million young lives saved each year.
Despite these encouraging statistics, nearly two million children a year still
die for lack of immunization. The odds can be beaten with your help.
For more information on how you can help support
this program, please contact:

Canadian Public
Health Association
1565 Carling Avenue, Suite 400
Ottawa, Ontario Canada
KIZ 8R1
Telephone: (613) 725-3769
Fax:(613)725-9826

March/April 1997 • page 27

(Netherlands, cont'd from previous page)
caregivers’ influence on
Specific education and
these rights. Finally, train­
training of caregivers in
ing should increase
sheltered homes can con­
caregivers’ awareness of
tribute to the consistency
their
personal values and
and efficiency of care. The
standards and, how these
goal of this training should
influence their actions.
be to achieve consistency
Besides training and
between the actions of the
promotion of expertise of
caregiver and the agreedprofessionals in the special
upon personal policy plan. A
needs area, it is recom­
second aim should be to
mended that a committee be
encourage caregivers to
struck to evaluate the re­
become more conscious of
strictions which are imple­
the privacy, autonomy and
mented according to the
right to self-determination of
treatment plan or personal
people with mental disabili­
policy. Staff-determined
ties and an awareness of

restrictions entered into
residents’ files are not nec­
essarily ethical. A committee
consisting of lawyers, health
professionals and parents
could evaluate these restric­
tive measures and contrib­
ute to the improvement of
the quality of these health
care projects in The Nether­
lands.
For more information on
this report or on any related
topic, call or write Gerda
Wever, 3030 - 9131 Capella
Drive, Burnaby, B.C. V3J
7K4, (604) 421-7345. «

Vancouver
children;s Festival
May

to June 11 at Vanier Park

Discounted Early Bird Tickets are now on sale until
May 4 for the Vancouver International Children's
Festival which is celebrating its 20th year. The 1997
Festival will feature over 250 ticketed performances
from companies and artists representing six coun­
tries, as well as acres of on-site fun-all under the
red and white tents at Vanier Park, 1100 Chestnut
Street in Vancouver.
Early Bird Tickets from $3.75 to $8.50, Regular
Tickets from $4.25 to $10. To receive a brochure
with complete scheduling details call (604) 6877697. To book tickets call TicketMaster at 280-4444.

page 28 • March/April 1997

Transition

Resource for Deaf Women
The members of the Comité
d’aide aux femmes Sourdes
de Québec are happy to
announce the publication of
the document entitled Inter­
vening with Deaf Women
who are Victims of Spousal
Violence. This 169-page
document is intended for
resource persons with ex­
pertise in spousal violence
who may wish to extend
their services to Deaf
women.
The authors, three
intervenors and one Deaf
woman, have written this
document following consul-

tations with Deaf women,
intervenors working with the
Deaf community and shel­
ters for women victims of
spousal violence.
Following a descriptive
profile of Deaf women and
(heir distinctive culture, the
document presents specific
aspects of spousal violence
as experienced by these
women and an outline of the
difiiculties they encounter.
The core of the document
proposes elements impor­
tant to an intervention
adapted to the needs of Deaf
women and presents various

tools designed to support
and maximize the interven­
tion process. The last chap­
ter contains recommenda­
tions aimed mainly at facili­
tating Deaf women’s access
to resources intervening in
spousal violence and at
sensitizing the Deaf commu­
nity to this specific issue.
For more information or
to order copies of the docu­
ment ($25), please contact:
Comité d’aide aux femmes
Sourdes de Québec, 1480,
80e rue Est, C.P. 59030,
Charlesbourg, Quebec G2L
2W6. -

Introducing

Classified Ad

Norma's Independence
and disability Equipment Classifieds

(?) Two-bedroom
wheelchair accessible
condo in New Westminster.
870 square feet. 15 years
old. $112,000. Secured
underground parking.
Central location. Dropped
countertops in bathroom
and kitchen. Wrap-around
patio, completely fenced.
Contact Bert Janus,
Country-Wide Delcrest at
590-3231.

A brand new service dedicated to helping people buy, sell or

exchange used independence and disability equipment on a

direct person-to-person basis in Canada or the northern United
States.

By registering an ad with us, you access a market of buyers and

sellers looking specifically for disability equipment. Once you are
a subscriber, you receive a monthly "Classifieds Newsletter", as

well as your regular line advertising on the web. For example, a
three-month ad subscription will cost just $15—a bargain
compared to newspaper ads!

For more information, contact:
Norma Fairbairn

269 Carleton Drive, Saskatoon, Saskatchewan S7H 3P1
Tel/Fax: (306) 955-0071

email idec@sk.sympatico.ca
http://www.lights.com/classifieds

March/April 1997 • page 29

Transition Publication Society, c/o B.C. Coalition of People with Disobilitios
204-456 W. Broadway, Voncouver, BC V5Y1113 * (604) 875-0188 * fax 875-9227

Canadian Publications Mail
Product Sales Agreement No. 0507148

There's Still Time to
Speak Up on No-Fault!
The government of BC has not finalized its decision on what
changes will be made to our auto insurance system. Now is
the time to speak up and let the government know you don't
want a no-fauit system. If you want information on how nofauit will affect innocent accident victims, contact the
BCCPD office.

To voice your opposition to no-fault, call Premier
Clark at 387-1715.