Thursday, June 8, 2017

Last year, Ontario Ombudsman Paul Dube released a report critical of Ontario’s care of developmentally disabled adults including those with cerebral palsy. At the time, there were 9,700 people waiting for residential care across the province.-------------Years of frustration over waiting for services has boiled over recently, with calls for change in the Ontario legislature and a week ago, a class-action lawsuit filed by Toronto law firm Koskie Minsky. The lawsuit seeks $100 million in damages for negligence, claiming the Ontario government denies services to developmentally disabled adults through wait lists administered in an “ad hoc, inconsistent and unreasonable manner.” The inconsistency is apparent in the South West Local Health Integration Network that oversees provincial health-care spending in a region stretching from Tobermory to Lake Erie, and Newbury to Stratford. If you’re a senior or an adult with moderate physical disabilities, you qualify for a personal support worker. Even in this category, there are 296 people in the local LHIN waiting for help. If you’re between 18 and 21 with medically complex needs, you qualify for one of 12 beds available across the entire region. If you’re an adult, not a youth or yet a senior, you have even dimmer prospects.-------Those who run agencies supporting severely physically disabled adults call it the 50-year wait list. If there are 50 people on the list, chances are you’re waiting 50 years to get the support you need.--“I always talk to him now, ‘Before I die you have to . . .’” Jeong-Suk says but cannot finish because her face bows in tears.--------------Someone has to stay with Alex 24 hours a day, and despite considerable help from his sister Jin Cha, friend Michael Kerr, and personal support workers, the bulk of the work has fallen to the elderly Korean woman.---------“I used to say, only age is a number,” says Jeong Suk, her English slightly broken inside a soft Korean accent. “But now,” she says about her struggles, “the age is right.”--------Several times during the day and sometimes at night, 77-year-old Jeong-Suk Cha has to put her 48-year-old son Alex in a sling.-------------“It’s not your fault,” Jin says after detailing the strain on the family. “I’m just trying to be a voice for you.”-------------Alex is allowed a personal support worker for 90 hours a month, although Jin has fought hard enough to get that bumped up to 140 until the end of April. The only time her mother can get out of the house or take a break on weekdays is during a four-hour personal support worker visit. On Sundays, she rushes to church and back while the family helps. The rest of the days, suffering from arthritis herself, Jeong-Suk has to do Alex’s physio and massages, wash his clothes — sometime soiled — make his meals, brush his teeth, turn him so he doesn’t get bed sores, scratch him when he’s itchy, shower him and on and on. “I can’t get her recharged. She doesn’t know what that is,” Jin says. As her mother ages, Jin has stepped up efforts to get Alex into residential care. “We are a private family, but we can’t keep quiet anymore. We don’t have a voice.”---

No excuses for the failure of the government of Ontario to provide an appropriate placement for this citizen with cerebral palsy who is being taken care of by his 77 year old mum, sister and nephew at home when they all need to be relieved of this work to have their own lives back. Such a poor performance by government all over Canada that will only be changed by citizen activism. #SHARESHARESHARE FOLKS.
Several times during the day and sometimes at night, 77-year-old Jeong-Suk Cha has to put her 48-year-old son Alex in a sling.
THEWHIG.COM
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Because of the failure of the government of Ontario this poor senior has to take care of her son with cerebral palsy at home. There is no room at the inn. Well why not? I would say this is a deliberate policy of the government of Ontario.
Like the government of Alberta the move has been to download care of our family members with disabilities to anyone in the private sector willing to make a real estate investment, throw money at them and then leave the labour problems that arise from too little money spent on staff to the private sector as in the Cold Lake Points West Living mass terminations.
It's shameful that all over Canada we have parents who are aging, siblings of disabled children as well as extended family do the work of their lives in caring for family members who need quality placements that ensure they get appropriate care. Why is there the lag by all levels of government? I would say that families of disabled folks are too busy taking care of their own to activate themselves for political action and uniting their voices.
But absolutely unity is required as well as political action. The class action lawsuit in Ontario will also help. We all need to speak. This senior has given up her life to take care of her son. Now she needs a place in the Inn.
#SHARESHARESHARE folks. This seems to be the only way to get results all over Canada:
“I always talk to him now, ‘Before I die you have to . . .’” Jeong-Suk says but cannot finish because her face bows in tears.-

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When I read the words of this elderly woman I understand completely how she feels:

http://www.thewhig.com/2017/04/17/ont-family-struggling-as-man-with-spinal-cord-damage-on-50-year-wait-list-for-bed-in-care-facility

“I always talk to him now, ‘Before I die you have to . . .’” Jeong-Suk says but cannot finish because her face bows in tears.
*****
I know this feeling because my parents have this feeling. Who will take care of Rebecca when they are gone?

This is the horror of every family with a child with severe disability--there is no way that the child can make it without  24/7 supervision by family or the care facility.

In this family's case the care facility is nowhere to be found and a senior has had to manage by herself.

It is absolutely shameful.
The MLAs in Ontario should hang their heads in shame.
Why don't they see that the families of these disabled children, youth and adults are giving up their lives to keep their family members safe?
Why are there no arrangements made to take the burden from them? Why do families have to sue the government of Ontario to get the MLAs to do their jobs?  Good questions all.

My guess is that governments do not care about these families. They are burnt out with taking care of family members and can't agitate in public.
They have to do the work without respite often times because there aren't many places where their disabled family members can be taken care of or even at home by others.
Finally fed up after years spent begging and on their knees they give up with the negotiation business with the government and do a lawsuit. How shameful that the government forces families to go to court on top of their other burdens to get government do to the right and just things.

The lawsuit may help matters but in the meanwhile what happens?
What ends up happening is that the parents and siblings are stuck with this work. I say STUCK. Because this is what it is.
We are stuck with the care of disabled family members because this is the most convenient and cheapest solution for the government anywhere in Canada. Why bother to do the work of making other arrangements when government can download care to the families and then pretend that there is no fricking money other than home care cash. The home care cash is a fraction of the money that would be required to service appropriately the citizens with disabilities in facilities rather than at home.


This is the real reason for the home care funding by the federal government. The federal government isn't giving the money to solve the problem of families faced with the care of family members-nope. The government is giving the money to the families so that families who are STUCK with the care of family members continue to do this work because this money represents the cheapest solution to the problems of servicing complex care patients. This is superficial band-aid care given to suffering and struggling families of disabled family members--who will be given superficial help that doesn't in a million years approximate the time, money and effort that a good facility could provide. We are subsidizing the care that isn't present in the system for a damn good reason. It's because government does not want to spend the major money required for this sort of solution. Instead in Alberta we get this money handed over to big oil in the form of a loan for $235 million while folks taking care of disabled family members have to use the siblings and extended family members to take care of their own. It's such a betrayal and subversion of the social contract.
 It is cheapening out and downloading care to the families. Here the federal government tells us--you wanted home care money -and here it is. But what is not said -is the reason families ask for home care money is that there is nowhere of quality to put their family members and so they are stuck with giving up the lives of all concerned to do the work that government is not doing.

Why?
Government has not invested in the facilities required for the care of these disabled citizens.
Families can do the work up to a certain point. But when you are senior--you need help yourself. And what happens then? Do families have to allocate the burden out to the siblings? Is this fair? No it is not.
In the absence of a fair number of hours and even of any hours to service a family member with disabilities there needs to be facilities where the family members can be serviced appropriately with reasonable quality of life.
What is required is homes for handicapped people not long term care but places where they can live with dignity and with happiness. There needs to be quality of life and this can only be provided with higher staff:resident ratios and more money. This is the place of the real problems. The government doesn't want to spend the money on public facilities or on publicly managed staff. So it outsources everything to the private sector with the results of the Points West Cold Lake mass terminations when staff yap about problems at the facility.

You have families. You have disabled citizens. You have an indifferent government everywhere I look in Canada. What is the solution? Go public folks. Can't get the required level of care? Yap about it. Can't get the required supports and services? Don't stay silent. Can't get the appropriate placement? Grieve it and appeal it. Make the public documents of dissent, disagreement and demand change.

Don't stay silent. Why should you? These disabled citizens are human beings with human rights. Why should their human rights be ignored? And for that matter why should the human rights of this senior who has the burden of care be denied?

Speak out.  #SocialMediaChangesEverything. Denying Alex the care he  needs in an appropriate setting is an abuse of his human rights in my opinion and this sort of junk by government needs to end pronto. It will only end when we speak and demand change. Not ask for change. But demand it.

http://www.thewhig.com/2017/04/17/ont-family-struggling-as-man-with-spinal-cord-damage-on-50-year-wait-list-for-bed-in-care-facility

Those who run agencies supporting severely physically disabled adults call it the 50-year wait list. If there are 50 people on the list, chances are you’re waiting 50 years to get the support you need.

**
Just look at the challenges of this family folks and weep. Then get off your duffs and write to the government of Ontario. This is junk. They have the money. They spend it all the time on the elite. But not on the weakest among us:

http://www.thewhig.com/2017/04/17/ont-family-struggling-as-man-with-spinal-cord-damage-on-50-year-wait-list-for-bed-in-care-facility

At the news conference, Alex’s sister and tireless advocate, Jin Cha, spoke for an allotted two minutes.
She invited The Free Press to take a closer look at the family’s challenges, in an effort to push for the province to provide more housing for adults with complex physical disabilities, like her brother.
“Alex has a sharp brain but he’s trapped in that body,” she says in interviews at the condo he shares with their mother.
Born with cerebral palsy, Alex was an active person for a long time. But he fell in 2004 while brushing his teeth, and suffered neurological and spinal cord damage.
He spent the summer in Parkwood Institute and after, Jin moved to the family house for a while to help her widowed mother look after him. They put a stair glide, porch lift and grab bars in the home to help.
They also put Alex on a wait list for a bed at Participation House.
Over the next 13 years, Alex suffered more falls, including one in 2015 that put him back in Parkwood and left him with a loose bone pinching on his spinal cord, the loss of almost all mobility, and the threat of one more fall killing him.
The family sold their home, and moved Alex and his mother into a condo apartment.
Jin lives in the same building, with her nephew, whom she persuaded to join in the family round-the-clock care.


http://www.thewhig.com/2017/04/17/ont-family-struggling-as-man-with-spinal-cord-damage-on-50-year-wait-list-for-bed-in-care-facility


Ont. family struggling as man with spinal cord damage on '50-year wait list' for bed in care facility

By Randy Richmond, The London Free Press
Monday, April 17, 2017 6:11:59 EDT PM
Alex Cha, 48, is lowered to his bed by his mom, Jeong Cha, 78, and guided by his sister, Jin Cha, at their north London condominium on Tuesday, April 11, 2017. (MIKE HENSEN, The London Free Press)
Alex Cha, 48, is lowered to his bed by his mom, Jeong Cha, 78, and guided by his sister, Jin Cha, at their north London condominium on Tuesday, April 11, 2017. (MIKE HENSEN, The London Free Press)

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Several times during the day and sometimes at night, 77-year-old Jeong-Suk Cha has to put her 48-year-old son Alex in a sling.
She’s a shade under five feet tall, slight, maybe 120 pounds. He’s about 180 pounds and must be moved carefully.
Like countless other Ontario residents — so many a $100-million class-action suit has just been launched against the province — Jeong-Suk often has to work alone.
First she glides a lift over top of Alex, places colour-coded straps around his body, and pushes the button that lifts the straps and sling.
She then pushes him: to bed, from bed; to the toilet, from the toilet; to a lounge chair, from a lounge chair, to his wheelchair, from his wheelchair.
He spends a lot of his time in his motorized wheelchair, and when he slumps a bit too far, his mother has to reach from behind and pull him up. That recently gave her a four-month stint of bruised ribs.
“I used to say, only age is a number,” says Jeong Suk, her English slightly broken inside a soft Korean accent.
“But now,” she says about her struggles, “the age is right.”
Someone has to stay with Alex 24 hours a day, and despite considerable help from his sister Jin Cha, friend Michael Kerr, and personal support workers, the bulk of the work has fallen to the elderly Korean woman.
“I always talk to him now, ‘Before I die you have to . . .’” Jeong-Suk says but cannot finish because her face bows in tears.
Alex Cha, 48, is lowered to his bed by his mom, Jeong Cha, 78, and guided by his sister, Jin Cha, at their north London condominium on Tuesday, April 11, 2017. (MIKE HENSEN, The London Free Press)
Alex, who has cerebral palsy and spinal cord damage, is on a wait list for a bed in a residential care facility.
Only in the most superficial ways can it be called a wait list. Or perhaps a wait list in the deepest of ways.
Those who run agencies supporting severely physically disabled adults call it the 50-year wait list. If there are 50 people on the list, chances are you’re waiting 50 years to get the support you need.
Years of frustration over waiting for services has boiled over recently, with calls for change in the Ontario legislature and a week ago, a class-action lawsuit filed by Toronto law firm Koskie Minsky.
The lawsuit seeks $100 million in damages for negligence, claiming the Ontario government denies services to developmentally disabled adults through wait lists administered in an “ad hoc, inconsistent and unreasonable manner.”
The inconsistency is apparent in the South West Local Health Integration Network that oversees provincial health-care spending in a region stretching from Tobermory to Lake Erie, and Newbury to Stratford.
If you’re a senior or an adult with moderate physical disabilities, you qualify for a personal support worker. Even in this category, there are 296 people in the local LHIN waiting for help.
If you’re between 18 and 21 with medically complex needs, you qualify for one of 12 beds available across the entire region.
If you’re an adult, not a youth or yet a senior, you have even dimmer prospects.
Officials with the South West LHIN acknowledge they don’t have a handle on the number of medically complex or developmentally delayed adults seeking residential care or how many spaces are available.
“The South West LHIN began working with our partners in 2014 to develop a more comprehensive assisted living model that could support people with more complex medical needs or fragility to live in the community. This type of model is far more intensive and requires 24/7 on-site staff with specialized training,” Michael Barrett said in a written response to questions.
“We do not yet have the fulsome monthly reports available to us to give us more detailed information on the number of referrals, client characteristics or wait list data.”
Last year, Ontario Ombudsman Paul Dube released a report critical of Ontario’s care of developmentally disabled adults including those with cerebral palsy. At the time, there were 9,700 people waiting for residential care across the province.
In the South West LHIN, London’s Participation House has 40 spaces available, and 60 to 90 on the waiting list.
That’s where Alex would like to go.
The brief outline of Alex’s story first came to light three weeks ago when London West New Democrat MPP Peggy Sattler held a news conference at Participation House, then raised the issue in the legislature. Health Minister Dr. Eric Hoskins promised to look into the matter, but acknowledged Ontario’s disabled residents need more help.
At the news conference, Alex’s sister and tireless advocate, Jin Cha, spoke for an allotted two minutes.
She invited The Free Press to take a closer look at the family’s challenges, in an effort to push for the province to provide more housing for adults with complex physical disabilities, like her brother.
“Alex has a sharp brain but he’s trapped in that body,” she says in interviews at the condo he shares with their mother.
Born with cerebral palsy, Alex was an active person for a long time. But he fell in 2004 while brushing his teeth, and suffered neurological and spinal cord damage.
He spent the summer in Parkwood Institute and after, Jin moved to the family house for a while to help her widowed mother look after him. They put a stair glide, porch lift and grab bars in the home to help.
They also put Alex on a wait list for a bed at Participation House.
Over the next 13 years, Alex suffered more falls, including one in 2015 that put him back in Parkwood and left him with a loose bone pinching on his spinal cord, the loss of almost all mobility, and the threat of one more fall killing him.
The family sold their home, and moved Alex and his mother into a condo apartment.
Jin lives in the same building, with her nephew, whom she persuaded to join in the family round-the-clock care.
“We do try to focus on the positive,” Jin says in a visit marked by laughter as well as tears. She often takes a break from telling the story to put a hand on her brother, tease him and confirm with him what she’s saying.
The doctors, the personal support workers, the people she’s been hounding at the LHIN are all kind, she says.
But looking after Alex takes a lot of work. Jin is the organizer. She has created a binder with 69 pages of photographs showing each step of his daily exercises. Another binder for personal support workers contains five sections, toileting (with 64 photographs and instructions), extra clothes to show where they are kept, getting him out of bed (37 photographs with instructions), washing routine (23 pages) and breakfast (five pages).
“He cannot direct his own care. He can’t verbally tell someone something.”
A full-time teacher, Jin figures she spends an average of two hours each day organizing personal support worker schedules, doctor’s appointments, regular blood tests and other chores. She’s the one who makes sure he continues to get the assessments to stay on the wait list.
Alex is allowed a personal support worker for 90 hours a month, although Jin has fought hard enough to get that bumped up to 140 until the end of April.
The only time her mother can get out of the house or take a break on weekdays is during a four-hour personal support worker visit. On Sundays, she rushes to church and back while the family helps.
The rest of the days, suffering from arthritis herself, Jeong-Suk has to do Alex’s physio and massages, wash his clothes — sometime soiled — make his meals, brush his teeth, turn him so he doesn’t get bed sores, scratch him when he’s itchy, shower him and on and on.
“I can’t get her recharged. She doesn’t know what that is,” Jin says.
As her mother ages, Jin has stepped up efforts to get Alex into residential care.
“We are a private family, but we can’t keep quiet anymore. We don’t have a voice.”
She has prepared packages of information for the LHIN and The Free Press, including his discharge documents from Parkwood.
“Client should receive total assistance for AM and PM routine (bathing, dressing, grooming, toileting) and feeding.”
The alternative offered to men and women like Alex is long-term care, with seniors.
Alex is not a senior. He spends hours online at night communicating with others.
“He has a sharp brain. Everything works. He tells really bad jokes but he thinks he’s funny,” Jin says, turning to smile at him and tap his knee.
When he was told he had to live in a seniors’ home, Alex wanted to talk to the family doctor.
Jin starts to cry when she explains why.
“What he’s saying is he would rather die than go into a nursing home. It’s a death sentence. It’s like I’m choosing my mom’s life over his.”
In the package prepared for the LHIN is a note from Alex, typed out slowly with the index finger of his one good hand, his right, on his computer.
The thought of going to long-term care: “I rather die if I have to go there. I really need help.”
But the note contains humour as well.
“My family members can’t take care of me because they got to work & to be honest their patience is nothing writing home about sometimes.”
In a short visit at his home, Alex’s humour often breaks through his damaged body.
It’s a sign of the life inside that his family wants to keep alive.
“It’s not your fault,” Jin says after detailing the strain on the family. “I’m just trying to be a voice for you.”
Alex tries to say something. I love you, perhaps.
“We’d come and visit you every day,” Jin promises.
Alex roars in laughter, reacting the same way every adult would at that thought.
“Oh God,” he says.
rrichmond@postmedia.com




I am writing about the Cold Lake Points West Living terminations. I am curious why the PCs went into the private continuing care system and I suspect that handing over labour problems to the private sector was part of the rationale for privatization.
Also when the private operators work within the limits of the funding provided as well as siphon off cash for extravagant CEO salaries, bonuses, expenses etc as well as shareholder returns we can be sure that the GOA won't be held to account.
Surprisingly in another private company --Revera is owned by the pension plan of public sector workers in Canada. It's sad that the federal government countenances poor service provision in the cases documented by W5 but makes no attempt to divest from this company that has provided Alberta families with problematic care as well.
In the W5 presentation the problems found at Revera facilities indicate that the private sector is not amenable to oversight by the provincial governments and raises the question of conflict of interest in my mind. How can one level of government -the federal government invest in Revera through pension plan investments while another level of government be charged with disbursements of public health care dollars to the investment of the federal government employees? Isn't this a conflict of interest situation or am I reading this wrong?
In any case, the fact that federal pension plan funds are invested in a company that has been sued by families is a cause for concern and the Ontario government hasn't done anything as far as I can determine. What is needed is for families to yap about these cases to the public to raise the awareness factor. Here is yet another family yapping in Ontario where the failures of government are acute. In my opinion, government understands the needs but is incapable of taking action.
In Alberta government can do superficial things such as create a Disability Advocate who will be paid to tell us that he or she can't do anything because the legislation limits her work. Then meanwhile families will have to do what this family is doing which is care for family members unceasingly. Often respite isn't possible because in Alberta there aren't folks available to support the care of severely handicapped folks at home. So what do families do? They suck it up and keep working.
This is unacceptable. Respite care is required. These family members are working at jobs and at home. They should get time to feel their own lives. They are doing the work of heroes and heroines. We should recognize their unpaid labour that is done entirely out of love and see it for the sacrifice of their lives that this work represents.
Families need to go public with the problems that are entirely due to the government's failure to do the work for these families. In Alberta the government ponies up $235 MILLION for the oil and gas industry "loan" while meanwhile families who have kids with disabilities aren't able to get the services, supports their kids need and must do the work of paid workers. Unacceptable.
And until y'all go public,this junk of using family members as care workers will continue. Go public folks. Y'all need to have respite and need to have your lives back.
http://www.thewhig.com/…/ont-family-struggling-as-man-with-…
Ont. family struggling as man with spinal cord damage on '50-year wait list' for bed in care facility
By Randy Richmond, The London Free Press
Monday, April 17, 2017 6:11:59 EDT PM

Several times during the day and sometimes at night, 77-year-old Jeong-Suk Cha has to put her 48-year-old son Alex in a sling.
THEWHIG.COM

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