Submission to the Select Standing Committee
on Finance and Government Services
October 24, 2008
Waiting for Community Living Supports
How long is long enough?
Contact:
Laney Bryenton
Executive Director
(604) 777-9100 ext. 516
lbryenton@bcacl.org
Submission to the BC Select Standing Committee on Finance and Government Services
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CONTENTS
Recommendations
2
How long do we have to wait?
2
Background
3
The Waitlist Evidence Exists
5
The Solution
6
Next Steps / Conclusion
8
Recommendations
First, the BC Association for Community Living (BCACL) urges the
government to immediately make a significant financial investment and set in
place a three-year strategic initiative to address the needs of children and
youth with special needs, adults with developmental disabilities and their
families who are on waitlists for community living supports.
Second, resources must be allocated to meet the needs of other vulnerable
youth and adults who are currently not eligible for community living supports
based on the government’s restrictive I.Q. criteria.
How long do we have to wait?
Do we have to wait so long that…
•
Infants and toddlers miss opportunities for their optimal
growth and development? On Christmas day, 2004, a family
welcomed the birth of a beautiful new daughter. Learning right away
that their daughter needed early intervention services in order to give
her the best possible start in life and increase her chances of meeting
developmental milestones, the baby was placed on a waitlist for the
Infant Development Program (IDP). The family waited for three years.
In 2007, as the family celebrated Christmas, their daughter turned
three and no longer qualified for the services she so desperately
needed. The IDP program is available to infants from birth to age three
only and was designed to support that critical stage in a child’s life. It
is called Early Intervention for a reason.
•
A parent’s last moments with their child are spent fighting for
supports? Local media recently told the story of a Burnaby family’s
struggle to receive respite that would assist them in caring for their
daughter who had severe disabilities and significant health concerns.
After months of arguing for just a few hundred dollars of extra monthly
supports, the family was finally given more respite. Sadly, the relief
came too late – that same week their daughter went into Canuck Place
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and never came home. This family spent the last months of their
child’s life arguing with a system that is supposed to be there to help
her. How many more families are waiting for respite?
•
A mother’s only option for support is to give up her child to
foster care? One single-parent family has been waiting for Supported
Child Development services for two years and was recently told that
their wait would continue as long as there was no increase in funding.
Lack of needed childcare resulted in the mother being forced to quit
her job and live on income assistance. She is now faced with an
unfathomable option – to place her child into foster care where support
will be available. How many more families are being forced to put
their children into foster care?
•
A mother is forced to quit her job and re-mortgage her home
when her child graduates from high school? Upon their son’s
graduation from high school, one family in Vancouver has recently
faced the cruel reality of having all supports and services come to a
grinding halt – they’ve been told they are now on a waitlist for adult
community living services along with over two hundred other families
in Vancouver with 19-year-old young adults. The mother is forced to
quit her job and take out a second mortgage on her home in order to
privately pay for supports. How many more families are being
forced into poverty?
•
Senior parents pass away without the comfort of knowing that
their child is taken care of? One family in the Fraser Valley cared for
their adult son for more than 55 years with little supports from the
system. After waiting for years for residential services, the family had
given up hope on receiving help. When the father passed away, the
mother continued to care for her son - until she broke her hip and was
unable to return home. It was only this crisis that precipitated the
supports necessary for the son to move into residential support. The
support was ill-planned and the son was unable to be close to his
family. How many other senior parents are still waiting?
Background
The BC Association for Community Living (BCACL) is a provincial federation
that includes thousands of individuals, families, volunteers, and over 80
community-based agencies dedicated to making sure that people with
developmental disabilities are able to enjoy their right to lead active and
productive lives in their communities. We are working with partners to build
community and to enhance the lives of children, youth and adults with
developmental disabilities and their families by supporting abilities,
promoting action and advancing rights, responsibilities and social justice.
We envision a world where everyone belongs.
To advance our vision, we are working with partners in five priority areas.
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1. Supports to Children and Families - Supporting children and
families is an integral part of our community culture. Supports are
well-funded, readily-accessible, personalized and anchored in policy
and practice.
2. Disability Supports - Everyone has supports for daily living and
enjoys full social participation in inclusive and accessible communities.
3. Employment - Every person with a developmental disability who
wants a job has a job.
4. Inclusive Education - An inclusive education culture celebrates and
embraces uniqueness, has appropriate supports and resources, and
provides equitable access to lifelong learning.
5. Income Security - No person with a developmental disability lives in
poverty.
We have supported the government’s Great Goals for the past several years,
but simply can not understand how the government is building the best
system of support for children and youth with special needs and people with
disabilities. This past summer alone we have seen many regressive steps by
the government:
•
•
•
In July, the B.C. Government decided to further restrict access to
needed supports by changing the CLBC eligibility criteria based on
I.Q.;
Also in July, the government made a surprise announcement that
supports to children and youth with special needs will be removed
from CLBC and transferred back to the child protection ministry;
Government continues to be reluctant to provide necessary funding to
address the long and unacceptable waitlists for children, youth and
adults with developmental disabilities and their families.
These decisions have moved our province backwards.
The vision of transforming community living services in British Columbia
would give people with developmental disabilities and their families more
choice and control over their lives and the supports they require. The vision
of CLBC to provide a lifelong system of support has been betrayed and
embarking on yet another restructuring of the systems that support
vulnerable people seems ill-thought-out.
While we are deeply concerned about the erosion of inclusion for our citizens
in all aspects of their lives – at school, at work and in the community - we
have been called upon by our members across the province to continue to
urge government to address the waitlists for children and youth with special
needs, adults with developmental disabilities and their families. Waitlists are
forcing individuals and their families into crisis, and driving parents into
poverty and despair.
BCACL presented to members of the Standing Committee on September 15,
2008. Two very brave family members publicly shared their personal family
stories in the hope that their voices would be heard – that they would be
representative of others who do not feel they can share their stories – and
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that you would understand their lives and their challenges and make
recommendations to ease their circumstances.
The Waitlist Evidence Exists
It’s not about numbers. We know the need is real. We know the individuals
and families are real because we hear from them every day. We know there
is unprecedented need; need that we have never seen before in our province.
The government continues to argue about the accuracy of waitlist numbers
and refuses to make the information public. Even with an accumulated
surplus of $10 billion since 2006, government has not increased funding to
community living services to address waitlists.
Because the government will not make the waitlist numbers available, BCACL
has collected waitlist information from communities this fall in an attempt to
provide some insight into the current situation. Our numbers may not be
precise and we know that numbers change over time. Our point is to
demonstrate need where we can. We urge the government to address the
waitlists.
A Snapshot Sample of Current Waitlists in a
Variety of Services Across British Columbia
Region
Fraser Valley Community A
Fraser Valley Community B
North - Community A
North - Community B
North - Community C
North - Community D
North - Community E
North - Community F
North - Community G
North - Community H
Okanagan –
Community A
Greater Vancouver Community A
Greater Vancouver Community B
Greater Vancouver Community C
Greater Vancouver Community D
Infant
Development
Program
(IDP)
51
10
2
Supported
Childhood
Development
(SCD)
18
59
4
4
21
1
8
6
Day
Programs
Residential
Programs
Respite
Care (for
children &
adults)
Employment
Programs
60
9
Early
Intervention
Therapies
287
3
11
19
15
21
33
23
6
9
12
2
19
23
10
8
28
26
5
18
23
13
10
45
232
262
10
Exceeding
Capacity
28
Total
295*
456
135
91
181
9
* For illustration purposes, this is a waitlist report for five IDP programs out of approximately 52
programs funded by MCFD in B.C.
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287
We know from CLBC documents that:
•
There were approximately 700 adults waiting for supports in May
2007;
•
Approximately another 700 adults were identified as needing supports
before the end of 2008/2009;
•
Approximately one-half of the adults who require supports from CLBC
each year are unknown to CLBC or “show up at their door
unannounced” and in crisis, requiring immediate support;
•
We can conclude that 350 more adults have need identified in
2007/2008 and again in 2008/2009.
Given this evidence, we believe there are approximately 2100 adults with
developmental disabilities on waitlists for supports from Community Living BC
right now. Regardless of the numbers of people with disabilities needing
supports, this province has the necessary resources to make vulnerable
people a priority in the 2009/2010 budget.
Last year, CLBC called for $54.8M to address this need by the end of
2008/2009.
Ensuring Community Living BC has the funding it requires to meet the
identified needs of adults with developmental disabilities and their families
will enable the Crown authority to get out of the cycle of crisis response, and
meet its vision of providing good lives in welcoming communities for people
with developmental disabilities.
In addition to the community living supports provided by CLBC, thousands of
children and youth with special needs are put on waitlists for access to urgent
therapy services, infant development programs, supported child development
programs and respite care. Other advocates have suggested that an
additional $30 Million is needed to address the needs of children and families
on these waitlists.
Research supports that even small amounts of funding provided to assist
individuals and families when the need is identified, prevents the
development of crisis situations that are always more costly to address.
The Solution:
Government needs to do the right thing.
#1. Address the long and unacceptable waitlists for community living
supports.
Everyone wants to hear that waitlists will be eliminated and that children and
youth with special needs, adults with developmental disabilities and their
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families will get the help they need when they need it. No family wants to
beg for access to critical supports and services. No family wants to be pushed
into absolute desperation and crisis. No compassionate society should allow
this to happen to families – to our neighbours, coworkers, friends, and
community members.
#2. Address the needs of other vulnerable youth and adults who may not
currently qualify for community living services because of their I.Q.
While resources must be set aside to address people who are currently
eligible and waiting for community living services, so too must resources be
allocated to meet the needs of other vulnerable youth and adults who are
currently not eligible for community living supports based on the
government’s restrictive I.Q. criteria.
Next Steps / Conclusion
Although the standing committee made recommendations last year and in
past years to address the waitlists, no substantive investments have been
made. Increases in 2007/2008 simply paid for higher wages in the sector –
an important contribution to be sure – but in no way did the increases meet
the needs of those children and adults seriously in need of supports as they
continue to languish on long waitlists.
We invite committee members to contact us for additional information. We
are counting on you to hear these stories, think of the people in your lives,
and make recommendations urging the government to invest in the lives of
our society’s most vulnerable citizens. It is the right thing to do.
Individuals and families are in crisis.
How long can we ask families to wait?
“As a family, I have advocacy guilt. Because I am a strong advocate, I know my son
will get what he needs eventually…but I feel so guilty. I know if we get services, it
means another family waits even longer. Not all families are able to advocate like I do.
Some may not have access to the information I do, or have the advocacy skills I do, or
the tenacity that I do. It doesn’t mean they don’t love their family member as much as I
do. And it doesn’t mean that they should wait any longer for the supports they need to
be a healthy and happy family. Isn’t that what we all want? Isn’t that what we all
deserve? What if it was your family?”
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