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A task force set up to study cerebral palsy research said it hoped its consensus statement, published in the British Medical Journal, would stop "witch hunts" against doctors and nurses who were often held culpable for the condition.
The group, led by Australian obstetrician Alistair MacLeanan, said traditional medical assumptions held that cerebral palsy was mostly caused by a lack of oxygen in labour and thus a result of "birth trauma" or "birth asphyxia".
But MacLeanan told Reuters the group believes about 80 per cent of cases occurred during pregnancy, with only two per cent during labour and delivery and the remainder neo-natal.
Cerebral palsy, a non-progressive disorder of posture and movement, is caused by brain damage before, at or after birth, and affects one in 400 babies born worldwide, he said.
Reprinted from the Monday, October 18, 1999 issue of the Province
**Editor's Note: Due to cost overruns, the Victoria Health region is planning to put a cap of 120 hours (which works out to four hours per day) on people receiving attendant/homemaker care through a program originally implemented to allow people to be moved out of hospital quickly, and without needing to return to hospital. The program has since expanded to include people with disabilities. These cut backs will have a major negative impact on people who receive high levels of care and live in their own homes. This trend is quite widespread. It is now increasingly difficult for people with high care needs to be allocated the care hours they need to live in the community.
Both Yoshi and I sit on the steering committee for Individualized Funding. One of the issues it is dealing with is people's difficulty in getting the care hours they need and being forced to stretch out the hours that they have. A couple committee members went to Victoria to help organize people there to fight this decision. As people with disabilities who require attendant/homemaker care, we must let the health boards, politicians, and policy makers know how vital home care is to us. Otherwise more hours may be cut.
There also must be a distinction between attendant/homemaker care programs
for people with disabilities, seniors, and people convalescing from surgery
and/or illness. Because people with disabilities are usually young
with life-long disabilities, they require flexible, life-long care which
evolves with them over their life times. Their care must facilitate their
more active
lifestyles. Seniors who require care are often in their twilight
years and go on limited outings. They require steadily more care
and become more homebound as they age. Thus they're easier to fit
into schedules. People convalescing require short term care.
The two following articles discuss the proposal and its impact on people's lives.
Victoria health officials are planning sharp cutbacks to the high-level home care that goes to keep people out of hospital or institutions.
Brenda Marin-Link, Capital Health Region director of community programs, said the region is moving to end a program called Community Transitional Care. As a result, none of the region's 3,700 home care clients will receive more that 120 hours of home care per month.
Right now about 200 clients - some recovering from recent operations, others with permanent handicaps - are receiving more than 120 hours a month. Some get as much as 360 hours and some 24 hours a day home care.
Beginning October 1 the region stopped accepting new clients into the program. Existing clients will stay with their level of care up to December 31. After that, each case will be reviewed to find a way to bring them into line with provincial guidelines.
Other clients with more difficult problems will be provided with extra care for up to six months to the end of March. Again, these clients will have their cases reviewed.
There will also likely be job losses, most likely involving support workers who provide live-in care, said Marin-Link. She said since 1996, when the Capital Health Region was formed, home care has consistently run 10 percent over its budget of around $30 million. The region has set itself the goal of reducing home care expenses by $2.2 million by the end of March, 2000.
"The bottom line is we can not afford it," said Marin-Link.
The moves are also made necessary by the provincial government's refusal to boost grants or payments to the Victoria region to provide home care. "The view was that we are a wealthier area so people can afford to pay for their services," said Marin-Link.
The Community Transitional Care program was intended to allow people to be moved out of hospital quickly, and without needing to return to hospital.
Since the program began, it has been extended to palliative-care for terminally ill patients, acute care for patients recovering from acute surgery, provide a break for people who provide home care for family members and young disabled adults who can not fend for themselves.
Marin-Link said in some areas, the region should have a serious look at the kind of care offered.
For example, the region provides home care for about 40 young disabled adults, many of whom live on their own instead of in a group home setting. But Marin-Link questioned whether it was reasonable to expect young disabled adults to live on their own, when young able-bodied, working adults almost always share houses and apartments with roommates.
"We are putting these people into situations where the expectations are higher than the reality in the rest of society," she said.
Reprinted from the Friday, October, 15th, 1999 issue of the Times
Colonist
Cost-cutting by the Capital Health Region has Dale Hampshire worrying about his home - one month after he moved in.
The 19 year old Hampshire is handicapped with muscular dystrophy. Until one month ago he was a resident of Queen Alexandra Centre. Cost-cutting there saw him warehoused for a year with people of all handicaps, including severe mental disabilities.
But now he lives in subsidized housing with a full time care giver, the first time he can ever recall an element of independence in his wheelchair-bound life.
So Hampshire was stunned when he heard last week that the Capital Health Region is planning on cutting the amount of home care it provides to clients like him. "I waited all this time for this and now, one month into it, it's going to end," he said.
After three years of deficits in home care, the Capital Health Region is moving to reduce costs. To achieve that reduction the region will cap the amount of care in the home it provides at the 120 hours mandated by the provincial government.
The cap has Hampshire scared since he needs much more. He is one of 200 people receiving more than 120 hours, some receiving as many as 360 hours. Most of those clients are not permanent: they are either palliative patients or recovering from acute illness or surgery.
Hampshire is one of about 40 young, disabled adults who are receiving home care that allows them to live them independently. But the funding comes from a program that was initially intended as a temporary measure to get people out of hospital sooner or keep them from returning.
Brenda Marin-Link, CHR director of community programs, said the region has no plans to start cutting people like Hampshire off after a certain date. Rather, the region is just not accepting any new clients. It will move to examine options for the existing clients on a case-by-case basis.
MarinLink said it is believed other programs and sources of funding exist for many clients. For example, some clients have veterans' benefits and even extended-health benefits that could provide the home care.
Ironically, Hampshire has pals who have the same disability as he does. But they receive their home-care funding under a different program, administered by the Provincial Ministry of Children and Families.
Luke Melchoir, 26, is one. In the three years since he has been out of the Queen Alexandra Centre, Melchoir has completed a diploma at Camosan College and has gone into business with a partner.
The business is a mail-order company specializing in outdoor gear. His able-bodied partner does the sales and front work. Melchoir undertakes all the computer work. It's a partnership that functions well. "These are all things I would not have been able to do in a group home setting," he said.
Now as he watches his friends face the loss of their own homes, Melchoir is convinced his home is not far behind. "We are next. They will be coming for us."
Meanwhile, Hampshire and another friend, Grady Robertson, 21, who has muscular dystrophy and also receives his home care from the Capital Health Region, have started their own society.
Called Casa, Spanish for house, the society is designed to look at creative alternatives to provide housing for people with handicaps. One idea they are batting around is a multi-unit home - perhaps a four plex - where two units are rented or mortgaged on the open market. That money subsidizes the other two units set aside for disabled people.
"We are not all saying 'gimme, gimme, gimme.' 'Let's work together so we can find some independence and some cost savings too" said Melchoir.
Reprinted from the Tuesday, October, 19th, 1999 issue of the Times
Colonist
**Editor's Note: There is a plan afoot to close GF Strong and merge it with George Pearson Centre on the Pearson site. Many people in the disabled community are very concerned about this proposal. The major concern is the lack of consultation with people with disabilities. We are, after all, the end users of rehab services, and in some cases, long term care in Pearson. What will be the impact of the merger on rehab services and the long term care facility at Pearson? How can a long term care facility and a rehab facility, two completely different facilities, be effectively merged without sacrificing service? With any merger there are layoffs. How will these layoffs affect services? Who will determine what to cut and what to keep?
The following article discusses the merger proposal.
A report by Vancouver Hospital indicates that closing G.F. Strong Rehab Centre and relocating its service to an expanded facility on the George Pearson Site would save only $2.8 million a year in operating costs, not $4 million as anticipated.
The Vancouver-Richmond Health Board is expected to vote Nov. 25 on whether to give preliminary approval to the idea. But Mark Chase, vice president of planning and evaluation, said the project is unlikely to get a green light, given that the building would cost $92 million and generate limited savings.
"The dollars and cents of it clearly does not justify this project, so we have to look at whether it serves the population better," said Chase. "There is not exactly wild enthusiasm for the thing at this stage."
In fact, disability groups in the city have rapped the board for failing to consult adequately before the scheme to relocate Strong was devised. They have called for the project to be put on hold until a one-year study of rehab services, expected to begin in January, is completed, and groups with an interest in rehab have been consulted.
"We're still talking about programs and sites rather than programs and services," said Bruce Miller, executive director of the B.C. Paraplegic Association. "We need to look at the vision before we look at the drawings."
Board chairman David Levi was out of the country and unavailable for comment.
The largest plan by the consultants, the IBI Group, would return only one third of the Pearson site for the facility. A portion of the rest of the site, which occupies three quarters of a city block in South Vancouver, is earmarked for a public plaza, while the balance would be sold off for market housing.
The subdivision is expected to generate $33 million toward construction of the rehab facility, while sale of the Strong site could bring in another $15 to $20 million.
But disability advocates criticize the combined five-storey, 284-bed rehab facility as cold and institutional, especially since part of the savings would come from cooking food for residents off-site and reheating it.
Under the plan, Pearson's 156 long-term care residence, now housed in ground-level housing with access to gardens, would be relocated to the fourth and fifth floors of the institution, where there are no balconies. Lower floors would be allocated to Strong residents and out-patients services.
The B.C. Coalition for People with Disabilities proposed integrating rehab services at the Pearson site five years ago, but project co-ordinator Christine Gordon said the coalition never envisioned bunking the two distinct rehab populations together.
While Strong patients are expected to return to the community, Pearson residents usually live out the rest of their lives at the centre. "Many people who go into Strong for rehab would never go into George Pearson Centre -- they consider it to be the end of the line," she said.
Gordon cautioned the board to tread carefully, since a decision to sell Strong or Pearson's lands will limit the ability to expand rehab services.
Reprinted from the November, 10, 1999 issue of the Vancouver Courier
Cathy Evenson would like the world to know she is not mentally deficient. Not even a bit dim. She is not losing her mind, but she is losing her patience with people who leap to conclusions whenever they see someone in a wheelchair. People like members of the Coquitlam RCMP. They have stopped Cathy three times in the past year--twice because they believed she was a psychiatric patient on the lam from Riverview Hospital.
Cathy, born with cerebral palsy, was whirring along the side of Lougheed Highway, near her home a year ago when a cruiser pulled over. The officer asked her where she lived. Cathy tried to explain but the officer wouldn't listen.
"He wouldn't believe me," says Cathy, whose tortured speech sometimes
gives people the impression that she's not quite all there. They
radioed the hospital to see if anybody had escaped, but nobody had.
Otherwise, they'd have taken me away."
In March, a motorist reported yet another dangerous mental patient
on the loose. Cathy, bombing along Kingsway in Port Coquitlam, found herself
surrounded by three RCMP cars. It didn't help that her erratic limb
movements and distorted speech become intensified by the stress. She had
to phone her mom, Islay, to vouch for her sanity.
"I've never been so mad in all my life," says Islay. "She was terrified. It took her a long time to get over that."
So mom and daughter filed a formal complaint. Five months later, there's an encouraging settlement. The Evensons, in co-operation with the RCMP and with funding from the Coquitlam Kinsmen, have been asked to produce a video that will be used in police training centres across Canada. They're also hoping it will be aired on TV and that it will correct some of the misconceptions we have about people in wheelchairs.
There's one snag. They need creative and technical assistance. "We need somebody with a camera and a director," says Islay.
Cathy, well-educated despite her inability to write, is thrilled at finally having the opportunity to teach people how to relate to the physically disabled as normal individuals.
"You don't really make any friends because people are scared of you," she says. "We went to something on New Year's Eve, and the people at our table just moved away. I don't know why. At the hairdresser's, they'll talk to my mom. How is she supposed to know what I want done?"
But she says the police should know better. It happened again just a couple of weeks ago. This time, it wasn't the mental-patient-off-her-medication routine. Cathy was held "for her own good" because she was cruising along a section of road that had no sidewalk. The police called her nephew to come and collect her, even though she was quite capable of getting home by herself.
In the wintertime you can't get out and in the summer you get hassled by the police." says Cathy. "When Rick Hansen wheeled across Canada we thought everything was going to get better. Obviously it didn't."
Reprinted from the Thursday, September 9, 1999 issue of The Province
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