Home Supports are not Supportive.

Mom Victoria Allen knew the writing was on the wall when her special needs
daughter Becky, who needs 24 hour support, was sprayed in the face with
vinegar and water by her caregiver when she refused to get out of bed. The
caregiver was told by social workers that this behavior, which had occurred
more than one time, had to stop. When the caregiver decided to leave Becky
in bed for week in response to her not wanting to get out of bed, feeding
her just fruit, Victoria knew that writing said “quit your job and take care
of your daughter 24/7.”

It has been an exhausting and painful journey for single mother Victoria
Allen, following the birth of her daughter Becky in 1992. Her child was
diagnosed with several significant birth defects including Cohen Syndrome,
Autism Spectrum, Mental handicap, anxiety disorder, epilepsy, and motor
delays. Becky would require constant supervision for the rest of her life.
There is a cost to such care, and according to Allen, the agency responsible
for her care has reduced those costs on the backs of the weakest and most
vulnerable members of society; young adults like Becky Allen.

“Those who, like Becky,” she says “ rely on wheelchairs and walkers, on
schedules and consistency, on close knit relationships with their peers.
They are preying on weak and tired parents and I did not raise my daughter
to be warehoused like she doesn’t matter.“

Becky is 20 now and through a series of failed attempts by government to
place her in a cost-saving living situation she is residing at home with her
mother, who has
had to give up her employment to take care of her daughter.

Becky’s care fell into the hands of Ministry for Children and Families
(MCFD) while she was growing up, and there were a lot of problems even
though Allen tried to have Becky live with her full time. “She never had
just one social worker.” Allen said. “A lot of hope but no consistency. A
lot of meetings but no action. Never one person in charge of her case. No
before or after school care. No weekend care. MCFD said they could not find
anyone to do it.”

It took a seizure being ignored to get her into a Life Skills Program at
school. Becky did not have an educational assistant assigned to her. Her
mother said that she just sat at her desk and ripped up paper all day. She
was on a wait list to get into the life Skills Program, she was on a wait
list to see a medical specialist because she was starting to fall down.

‘She had a seizure in school,” said Allen. “ What did they do? Sit her at he
desk all day. I took her to emergency after school and the doctor on call
was
outraged and suddenly she got into the Life Skills program and jumped the
wait list to see the specialist.”

Allen sent her daughter to the Life Skills program in her wheelchair to make
sure she was safe from falling down. She stayed there in middle school
for 6 years.

MCFD was in charge of her case while she was under 19. As she got older
things became more difficult to care for her at home because Allen had to
work.

“So they put her in a townhouse with stairs! She has a drop-seizure
disorder. The caregiver was not equipped to manage her emotional or physical
needs. She refused to bring her walker in to the home.” said Allen.

Becky uses a wheelchair in the community and a walker inside the home.

‘When I complained I was told it was the caregiver¹s fault that the walker
was not brought into the home and it was between me and the caregiver.”

Becky was moved into another home six months later because the person in the
other home had little kids and was worried about the interaction between
Becky and them.

“ The home had steep stairs and they put her in a room at the top of the
stairs. She lived up there alone. No socializing- she was trapped up there
with a tv. Then she was moved to a rancher but that ended up being worse.
This was a respite home. There was no time given to get to know the woman
running it. They were paying her versus paying me.” said Allen. “ This woman
took over, changed Becky¹s family doctor without consulting anyone, had a
birthday party for her that did not inclde her me or her friends or family,
took her to emergency department a couple of times without telling me, Then
Becky told me she had been sprayed in the face with water and vinegar
because she wouldn¹t get out of bed.”

The respite provider admitted it and said she wouldn¹t do it again. After
that her answer was to leave Becky in bed for a week when she woulnd’t get
out of bed. She said she fed her fruit.

Allen says that MCFD put in no interventions. At the meeting when this was
revealed Allen said she was frozen in shock that they did nothing. “I didnt
know how to respond. We had a meeting with head of MCFD who said you can
take her or you can leave her there. Those are your two options.”

Allen was frantic because at that moment in time her living situation was
not suitable to move Becky back in with her. She had dogs and a home that
was too small. So she had to exercise the only other option the Ministry
who is in charge of keeping children safe gave her; send her back to the
situation.

“I had to send her back. Becky would tell me on the phone that the lady
would yell at her all the time. I moved into a different situation as soon
as I could, within about two months.” said Allen.

After many meetings over years and years, eleven social workers not
including managers, and living in ten different home situations to date,
Victoria Allen took her daughter Becky home to live with her. She received
the respite hours that she needed to have Becky at home and to be able to
work. They were at peace, as best as they could be.

That lasted a year until Becky turned 19 and was moved over to Community
Living BC. The CLBC is a Crown Corporation that funds support for adults
with learning disabilities. youth with developmental disabilities as they
enter adulthood and responsibility for their care shifts from the Children’s
Ministry to Community Living B.C.

Allen says they came in to fix something that wasn¹t broken.

“They want to move her into a homeshare - where it will cost a lot more than
what it does now to keep her with me.”

The rationale they use is she needs to be independent, to live her own life
on her own terms. For Becky this meant living in a room in a house
versus remaining with her mother and be supported by one consistent
caregiver while her mother worked. CLBC said they could not provide for that
scenario.

“I have been firm in my resolve to say no, she is not moving into a home
share based on her previous experiences. Becky wants to stay with me. She
likes her workers, her respite, her day program. But I was called into a
meeting where I was told by a (CLBC) Analsyt ‘As of Nov.1 you will have
nothing.’ They are trying to squeeze me into accepting a home share
placement.” Allen is not going to give in.

“ So she stays with me but they took away all my supports. No respite.
Nothing. We have been removed from home-based community inclusion and
homemaker services. She is with me 24/7, cannot be left unsupervised. CLBC
says I can spend 100 dollars a day up to $500.00 a month and can give them
receipts to be reimbursed. Who has a hundred dollars a day upfront to spend?
They already owe me $1200. to reimburse me for respite I paid for last
March.”

Community Living B.C. came under fire last year for pushing some people out
of group homes and cutting services to others once they turned 19. Parents
and relatives of developmentally disabled adults in group homes say that
Community Living B.C. is closing the homes and moving the care to less
costly, non-unionized arrangements, such as home-sharing with a caregiver.

According to then-Housing Minister Rich Coleman, group homes cost $100,000
per client to operate per year, whereas shared housing arrangements cost
around $40,000, which works well for some disabled adults. Home share people
get $2000 a month plus $716 of a persoon’s $906 disability assistance. “This
leaves people like Becky with $190 a month for entertainment,
clothing,personal needs. And how do we know that money is going towards
improving the lives of the people living there? I heard they get these
people from Craigslist.”

Th BC Association for Community Living has also spoken out against the cuts
that have put Becky Allen and countless others in precarious situations and
impacted their parents.

The BC Association for Community Living (BCACL) is a provincial non-profit
association dedicated to promoting the participation of people with
developmental disabilities in all aspects of community life. They are not to
be confused with Community Living BC (CLBC), which is the Crown Agency that
funds supports and services for adults with developmental disabilities in
BC.

On their website they state; “ In an attempt to recover a $22 million budget
deficit, CLBC embarked on a ³service redesign² process that resulted in
drastic cuts to supports for people with developmental disabilities and
their families and the rapid closure of group homes. We are calling for an
immediate moratorium on the
service redesign process.It has become clear that ³service redesign² is
driven and motivated by budget pressures and not the needs of community.

Moms on the Move was formed in 2001 by BC parents who were concerned about
drastic provincial budget cuts to services for children and youth with
special needs.
MOMS is now the largest provincial group representing families of children
and youth with special needs and adults with developmental disabilities in
BC.

Cyndi Gerlach and Dawn Steele, Co-administrators said, “There are countless
families who are needlessly suffering emotional and financial stress due to
CLBC's lack of concern, acknowledgement of problems and lack of financial
support.Adults with developmental disabilities are being forced out of their
homes and farmed out to home share contractors recruited off Craigslist.
Promises to respect choice, involve families abandoned. Agencies, families,
staff, clients say they fear retribution if they
complain publicly. No independent oversight, no public reporting,
significantly lower standards, instability and higher risk all characterize
CLBC's cheaper care models All to save 22 million dollars.”

The Advocate for SERVICE Quality, Jane Holland, helps adults with
developmental disabilities and transitioning youth with special needs and
their families have access to supports and services that are available. The
Advocate can help with services from the Ministry of Social Development,
from other ministries, Community Living BC or from service agencies in the
community. Throughout 2011 the Advocate¹s office became involved with
numerous callers concerned about the closure of group homes. following a
major analysis of CLBC in 2011, noted that the CLBC Board acknowledged that
changes to staffed residential living facilities had not been managed well,
and that these group home
closures were problematic for the individuals and their families. Adults
with developmental disabilities are at risk, as is the residential service
and community inclusion infrastructure that supports them. Service and
support options are being reduced, not expanded. Individuals and families
are not being consulted.
David Hurford, Director of Communications for CLBC said,"We are not closing
group homes. That is not the policy of CLBC."
“We initiated an external review of home case services over the holidays. We
respond to what families want. Homes sharing is increasing in popularity by
families.”

Hurford said that there are 3100 people in homesharing in BC and growing.
“We are initiating an improved complaint process. We are turning to
individualized preference where families manage the money and choose the
caretakers themselves. The only way someone is removed from a care home is
if a family member wants them out the person doesnt want to do it anymore or
there are safety concerns.”

Hurford explained the options available for CLBC’s clients. Home share,
group homes, service providers in-home, respite hours for caregivers so the
person can live with family. “We find out what they want and build around
that.” he said. “There is definitely movement towards buying into the
preferences of the individual and that will be fully implemented in the new
year.”

He also explained that there will be a home share review over the next six
months and CLBC wants to address access to services in more rural
communities like Campbell River. “Your health care infrastructure there is
still catching up with your population so there are challenges.”

Finally, he said, one of the major problems is the complaint process. “An
integrated services support team ahs been created to cut through red-tape
and get resolution for families who are not satisifed. The government
deserves a lot of credit for doing that.”

While Allen used to work while Becky was in a day program and in respite, As
of Nov.23 everything is gone.” said Allen. “ I drive her where she needs to
go. I pick her up. I take her to the doctors. I am not available for work.”

She plans to apply for income assistance.

“I want her to stay with me so I can work, save up for a house of our
own,and just get some in home supports while working which is cheapest for
the government.”

When asked what she wants Becky kept her head down coloring in a coloring
book and said,”I love my mum. The rest is stupid.”



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