Future tense
Gwen Lee wonders who will care for her son Geoffrey when she's gone. Hundreds of other aging parents in B.C. with developmentally disabled adult children face the same agonizing question.
by Cheryl Rossi, Vancouver Courier
Published: Friday, July 13, 2007
At 1 a.m. on March 11, 2005, Gwen Lee woke with what she thought was a severe asthma attack. She called 911. She had been through it before.
"This time I felt a pain. It started in my legs, so I never thought it was a heart attack," says Lee, 65. "When I laid down it started intensifying, and when it got to my chest, then I got worried."
Paramedics arrived. When she told them about the pain, one of the paramedics told Lee he needed to take her to the hospital so she could get checked out.
"I said, 'I can't. I'm alone with Geoffrey,'" she says, referring to her 36-year-old autistic and non-verbal son. But, luckily, her neighbour Myrtle saw the ambulance lights and came over.
When the paramedic told the neighbour he needed to take Lee, 82-year-old Myrtle said, "'You take her right now. I'll stay with Geoffrey.'"
While the internist at Vancouver General Hospital was interviewing Lee, she suffered an angina attack.
"I was in the hospital for five days," she says. "Now if Myrtle hadn't come, I would be lying on the floor, and Geoffrey wouldn't know to call anybody."
Fears about such scenarios are common among the mostly single aging parents who care for mentally handicapped children, says Lee, president of the local Parent Support Group for Families of Mentally Handicapped Adults Society.
As parents worn out from decades of caring for their disabled sons and daughters experience health problems, they discover a new concern--finding stable housing for their children so they can live fulfilling lives long after their parents are gone.
In some cases, health problems magnified by financial strain lead to tragedy.
On Dec. 30, 2001, an upstanding Okanagan couple killed their 34-year-old disabled son and themselves with carbon monoxide poisoning. A back injury had forced the husband to quit his job. The couple requested an additional $500 a month from the provincial government in addition to their son's $750 disability cheque to help them care for him, but their repeated requests were denied.
No one in the Parent Support Group was surprised by the desperate act.
"Six years later everything is worse than ever," Lee says.
The Parent Support Group for Families of Mentally Handicapped Adults Society celebrated its 10th anniversary in June-10 long years of fighting for respite, financial assistance and basic services for their children. They're not convinced the housing the government funds will meet their children's needs, and in recent years they've focused on creating a choice of stable housing options to protect their children's future as mature adults.
When 79-year-old George Soika sits with his eldest son, 56-year-old George Alexander, it's impossible not to notice the similarities between the two-thin hair, blue eyes, prominent ears and similar noses and frames.
"He's catching up to me," Soika quips after George Jr., who prefers to be called J.R., states his age. J.R. alternates between calling Soika "Dad" and "buddy pal."
Their new live-in caregiver Judy arrived three months ago, and before she came father and son were alone in their spacious rancher near Steveston.
"My biggest worry was what if I don't wake up in the morning. He wouldn't know what in the hell to do," Soika says. "Now, at least there's somebody else in the house that if something does happen-you know I'm not critically ill or something, I have my aches and pains and I hope to have a few years to go-but it is a comfort and I sleep a little better."
J.R. has phenylketonuria, or PKU, a rare genetic metabolic disorder that results in developmental delays and other neurological problems when treatment is not started within the first few weeks of life. J.R. was diagnosed when he was three-and-a-half years old. His enzyme deficiency means J.R. must avoid high-protein foods. He lives with life-threatening allergies, eczema, has had 70 per cent of his stomach removed, and needs to be told when to stop eating because he can't judge how full he is. He also suffers from osteoporosis and epilepsy.
"He understands everything," Soika says. "There may be a pregnant pause before he can talk, but that's his ailment."
Three weeks earlier at the annual general meeting of the parent support group, Soika stood up to thank the organizers of the group and representatives of the Mennonite Central Committee Supportive Care Services (MCC) for helping him secure a live-in caregiver.
"I have someone helping me with my son and we have someone living in, and it's given me a great, great peace of mind. I want to thank these people," he said, voice breaking as he choked back tears.
Prior to Judy's arrival, Soika had cared for J.R. as a single father since his son was 14.
He and his wife separated in 1959, partly because of the strain of trying to establish programs for J.R. and other disabled children. The two had started the Richmond Association for the Mentally Handicapped because few services existed then. With the help of association members, they established a school.
"Either myself or [my wife] would spend hours, hours on the phone with sobbing, hysterical parents," Soika said.
Since his school years ended, J.R. has attended a day program in Vancouver. In the early days when Soika drove him to his workshop, J.R. would often have seizures en route. Soika would detour straight to the hospital. He handled the problems mostly on his own, never leaving J.R. alone for more than 90 minutes.
Once when he was a teenager, J.R. spent an entire day waiting in the window for the HandyDart bus to transport him to his day program. The bus never arrived. Soika left him at quarter to seven in the morning and returned home after five to find him still wearing the heavy coat he'd put on that morning-even though it turned out to be a blistering day. The two apples in his pockets remained untouched. His face was burnt. (Soika emphasizes that HandyDart service is excellent now.)
J.R.'s dietary restrictions made Soika wary of handing his care to anyone else.
"At one of the respite places... I'm waiting for him to get ready and [the worker] says, 'Well we're just sitting down for lunch, would you like to join us?' I came and sat with him and here he's just going to go into a cheese sandwich. He's on a dairy-free diet for crying out loud. And that was the same place he would come home from with someone else's clothes."
Soika and his wife had two other sons. Their middle son, Gerry, was struck and killed by a car at the age of 16. His death occurred on the birthday of their youngest son, Jim. Soika and J.R. haven't seen Jim in more than a decade.
"Even when Jim was young he didn't want to have any relationship with J.R., absolutely none," Soika says.
Three times, Soika came close to long-term relationships with mothers of disabled children. "But they had as many suitcases, if not more, than I had," Soika says, and he felt he couldn't take on any more.
J.R.'s mother moved to Vancouver Island. Soika takes him to visit her in Port Hardy every summer and take advantage of the three-week break to travel the world and play and officiate tennis matches, one of his many sporting passions.
Soika, who worked at B.C. Tel for 40 years, said he received little support from the men around him. "Women will sister. Men don't brother," he says.
Soika met Lee when their sons were attending the same daycare. He started attending Parent Support Group meetings four years ago.
When he told Lee and the group's other key organizer, Janice Reithofer, that he was worried about J.R.'s future, the two women got the Mennonite Central Committee Supportive Care Services involved. The committee has provided services including homes and residential support to people in Abbotsford since 1974 and wants to offer services in Greater Vancouver.
"I was calling this mission impossible," Soika says.
An MCC facilitator visited the Soikas and developed a housing plan based on their needs. MCC submitted the plan for a 24-hour live-in caregiver to Community Living B.C., a Crown agency that delivers support and services to people with developmental disabilities, children with special needs and their families. The agency approved the plan, which was the first arrangement of this kind. (The government transferred responsibility for providing services to adults with developmental disabilities from the Ministry of Children and Family Development to Community Living B.C. two years ago.)
"It's hard to let go, so, of course, you monitor almost everything Judy does," he says.
"He's been doing it for 42 years so he cannot give it up," Judy adds.
Each month, J.R. receives $906 in income assistance, of which $716 goes towards Judy's position. If George put J.R. in a group home, it would cost the government an estimated $100,000 a year.
Soika says that after he dies, he'd like another disabled adult to move in with J.R. and his caregiver. He plans to mortgage his house and buy a three-bedroom apartment.
"Before I conk out," he says.
Randy Furgason becomes weary explaining how the group home he needed for Sarah, his 24-year-old daughter, didn't work out. A month after attending the annual meeting of the Parent Support Group, the 55-year-old longshoreman is at home in the humble Hastings-Sunrise house he rents with Sarah-his "princess like the former duchess-and his 77-year-old mother Mavis. Sarah sits cross-legged on the couch, with Sunshine, the family's black Bichon next to her. Sarah's hair is thin, her eyes are close-set and her cheeks are round and full.
She was diagnosed with a brain tumour at age three. Following an emergency 10-hour surgery, she underwent 32 radiation treatments to her brain and spine to ensure the tumour didn't return. "That was the beginning of her nightmare, and it's never stopped," a wan Mavis says.
They've since discovered that the amount of radiation Sarah received was too much for her size. She stopped growing, and Furgason had to give her human growth hormone injections every day until she was 12. The radiation damaged her thyroid and pituitary function, affected her vision and gave her tinnitus and recruitment, which causes her to develop headaches in noisy environments. She developed a curvature in her spine and has compromised balance and coordination. Sarah has virtually no short-term memory and is developmentally delayed. Six years ago she developed seizures that make her space out for 30 to 45 seconds and leave her feeling disoriented for 10 to 15 minutes afterward, with blurry vision, a headache and fatigue. She's also hypoglycemic.
Furgason has spent his life attending medical appointments with Sarah. In the early years she needed to see a physiotherapist, an endocrinologist and an educational consultant.
Although his wife, Rose, didn't work outside the home until Sarah was in Grade 2, he always went to the appointments.
"I understood what the doctors were saying, and I found that if I had to rely on what Rose would tell me that the doctors had said, it wasn't as accurate and it wasn't as complete, so I went there myself to find out what was going on," he says.
Like Soika, Furgason's marriage didn't last. He and his wife split when Sarah was 12. The strain of dealing with his daughter's special needs contributed to an already troubled relationship.
Sarah attended a private Catholic elementary school on the East Side, completed Grades 8 and 9 at Lord Byng and graduated-from a non-academic program-at Gladstone secondary. "It was the proudest moment of my life to see her walk across that stage," Mavis says.
For a time, Mavis would take the bus with Sarah to school and drop her off at her classroom. When Furgason and Sarah lived in a basement suite near Trout Lake he couldn't afford a car so he'd bus down the Drive to his mother's seniors home with Sarah. Mavis would feed her breakfast before the HandyDart arrived to take her to school.
Seven years ago they moved in together so Mavis could help Furgason care for Sarah.
But two years ago, a serious downturn in Mavis's health meant they couldn't care for Sarah anymore.
"It became pretty obvious that we were in a crisis situation where I couldn't just leave Sarah on her own and my mom was no longer able to help out," Furgason says, his voice low and grave.
Sarah's short-term memory impairment means she can't cook or remember when to take her medication, let alone remember where to find her clothes. Furgason has put T-shirt, socks and underwear stickers on her dresser so she doesn't need to root through every drawer to find what she's looking for.
"Sometimes Sarah falls when she has a seizure, and she has fallen in the bathtub before and that's required medical attention," Furgason says. "How would Sarah respond in case of a fire or somebody trying to break into the house?"
Furgason told Community Living B.C. Sarah needed to move into a group home. In the meantime, the Parent Support Group and MCC devised a proposal that would see Sarah, a friend and two mentally handicapped men housed in a duplex with staff rotating between the two units. But when Community Living B.C. suddenly came up with two basement spaces in a group home, Sarah and her friend accepted the immediate solution and Sarah moved in April 2006. "We weren't given any other choices," Furgason says.
He and Sarah felt optimistic about the move. But one upstairs tenant who couldn't speak, write or use sign language would often wake up in the middle of the night and bang around. The tenant directly above Sarah's bedroom was a little person who got around on a noisy cart and enjoyed karaoke.
"She often has that cranked up too," Furgason says.
"At 6:30 in the morning," Mavis adds.
"I've asked her to turn that down so many times, too," Sarah says.
Sarah developed chronic headaches and aches and pains throughout her body that physicians were unable to diagnose. She hasn't lived at the home or attended her day program since February.
For more than half a century, mentally handicapped people were placed in large government-run residential institutions. In the early 1990s the provincial government closed the institutions and opened group homes with related support programs and services. Since 1997, no new group homes have been established in Vancouver because of their high capital and operating costs. Instead, the government encouraged home sharing where a developmentally disabled person lives with a non-disabled individual or family as a solution to parents who can no longer care for their children.
Lee, the president of the Parent Support Group, knows a family whose daughter went through four home sharing placements in one year.
"Quite a few people have been in crisis and the government has put them into care and it's never worked out," she says. "The foster care family has the option of saying sorry, I can't handle it."
Furgason won't place Sarah in foster care because of the lack of accountability. When Sarah was in the group home he could visit at any time, ask questions and have his concerns addressed by a higher authority. "I don't want Sarah buried in somebody's house, out of touch and out of sight."
Furgason finds it perplexing the government pays other families more than three times the benefits their children receive each month to care for them instead of providing better direct assistance to the families of the children in need.
Last November, Furgason attended a meeting about Community Living B.C.'s Residential Options Project, which was offering to meet with every person living in a group home by March 2007 to provide satisfactory living arrangements for people with developmental disabilities. He met twice with facilitators and hopes proper housing will be found for his daughter. Among other options, Community Living proposed moving people with developmental disabilities into apartments where a roommate would provide them with support in exchange for free rent.
"Who is going to work for nothing?" Furgason wonders.
The duplex proposal MCC submitted on behalf of four families was rejected once Sarah and her friend entered the group home. Now MCC is about to submit a similar proposal to Community Living B.C.
A Residential Options project manager told Furgason the annual budget of the group home Sarah lived in was $400,000 to care for five people, so they're proposing an arrangement that would cost $80,000 a year or less per person.
Furgason wants his only child to have a home that respects her need for quiet, where she can stay during the day if she's not feeling well and not have to attend her day program, which too often seems like a place for people with developmental disabilities to kill time.
In her school, day program and group home, Sarah's special needs often haven't been adequately met because the needs of the majority take precedence. And because Sarah and others with developmental disabilities usually cannot speak effectively for themselves, their often overburdened parents must do it for them.
"I'm frozen in time," Furgason says. "I look at the future and I don't see the day that I'll be able to retire and enjoy the time off that retirement gives one... I'll only be retiring from work."
Furgason's lack of means adds to his concerns about Sarah's future.
"I don't have the type of financial resources that would allow me to provide a comfortable long-term future for my daughter," he says. "It's worrisome to me that as the government reduces the resources available to families like myself, that my daughter's future could be restricted and diminished."
The Parent Support Group has proposed policy changes to representatives from various ministries to help the families manage, but Furgason's never seen the government act on their suggestions.
"The politicians tend to utilize whatever dirty laundry that they can in order to achieve their goal, which is to make them look good and make the other party look bad," Furgason says.
"It makes me feel like people just aren't aware of what it's like to be responsible for another person 24/7 for the foreseeable future, maybe until your last breath," he adds. "It really doesn't matter to the people in government, the people that hold the purse strings."
The purse strings for the day program Lee's autistic son Geoffrey attends have been yanked tighter and tighter.
At their modest Sunset home, Lee proudly displays the framed artwork her son created in his day program in 2003. But since Community Living B.C. clawed back money from agencies that provide day programs three years ago, many of the activities that helped her son flourish have been cut. Lee worries the lack of stimulation will cause her passive son to withdraw into his own world and lose the hard-won skills he's acquired.
While she fights to have Geoffrey transferred from his Vancouver day program to a more varied program in Burnaby, Lee continues her work with the Parent Support Group. It includes 75 mostly single-parent families and runs out of Lee's basement on membership fees. It started with five families in 1997. When they saw the government phasing out respite hostels where their children could sleep over, they fought the loss. Now the government affords them 28 days a year-two days a month and four holiday days-of respite. Parents arrange for someone they know to take care of their child for a day or night and pay a $21.90 user fee each time.
Some of the members of the group receive help from their extended family. Lee's daughter Stephanie volunteers with the group, and Lee, her daughter and son go on outings together. But the members who've chosen to keep their sons and daughters at home feel punished for their devotion. While residents of group homes can have a worker stay with them while they're changing medications and can more easily access speech pathologists and a clothing allowance, parents who keep their children at home fight for every scrap of help they receive. They also suffer the indignity of having to visit the welfare income assistance office every year to maintain their children's disability benefits.
When Geoffrey first started receiving income assistance and needed a pair of rain boots, another parent told Lee he was entitled to a yearly $500 clothing allowance. Lee asked about it at the income assistance office.
"The financial assistance worker turned and asked me, 'What are you doing with his money every month?'" Lee says. "That $500 allowance was only available to people in group homes. That's when I realized that my son was treated differently because I was looking after him. I'm penalized... and I'm the one who's saving them money." (Such allowances are the norm now.)
She's asked for people with developmental disabilities to be given a special card, akin to a seniors card, to no avail.
In 2003, the Parent Support Group contacted Mennonite Central Committee Supportive Care Services about housing. The organization is developing individual housing plans for families and submitting them to Community Living B.C. The Parent Support Group wants to develop a "community village" where mentally handicapped adults could live, learn and socialize with friends, families and members of the community. The village could exist in a neighbourhood with 10 to 20 units where adults with mental handicaps could safely grow old. Some townhouses and duplexes could include assisted living spaces for aging parents who wish to continue living with their sons and daughters.
The Parent Support Group wants their children more involved with the broader community for two reasons: they want them to develop relationships with people who will care about them once their parents have passed on, and they realize they need members of the community at large to pressure the government to provide more support for their children because their own requests appear to fall on deaf ears.
"The developmental disabilities people, I call them the invisible people in our community because nobody realizes they exist," Lee says. For too long, parents have carried on quietly but it's time to make the public aware of their plight, she notes. "The politicians know all about us..."
Lee says the Parent Support Group wants the government to improve the quality of life for their sons and daughters.
"Not for us, we're past that," she says. "It's too late for us."
See related story "Survey says... one size doesn't fit all"
© Vancouver Courier 2007
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Survey says... one size doesn't fit all
Need for traditional group homes on the decline, says report
Cheryl Rossi, Vancouver Courier
Published: Friday, July 13, 2007
The Crown agency that helps people with developmental disabilities and their families profiled thousands of people living in group homes in the past year in a bid to provide them with the kind of housing they want.
Community Living B.C. completed profiles on 2,435 individuals living in group homes between September 2006 and March 2007.
"Increasingly, people are requesting and receiving individualized supports that meet their own unique needs and preferences," states the Community Living B.C. report about its Residential Options Project. "This is consistent with recent research that clearly demonstrates that 'one size fits all' is no longer an acceptable standard."
More people are living in staffed residential homes than ever before, with a 30 per cent increase since 1991, but the growth in popularity of group homes has slowed over the past several years.
And half of the people living in Community Living group homes in the past year were over 46 years of age, with the average age of residents at 45.
"Given that the average age of mortality for individuals served by [the agency] in 2006 was 51 years and that younger individuals and their families are typically choosing smaller, more person-centred living situations, this suggests that the need for traditional group homes of four to six people will diminish over time," the report states.
According to the report, those profiled show a growing interest in home ownership, sharing homes with individuals who do not have disabilities and "cluster apartments," in which residents live individually in apartments but share services.
"In 2007, 2,465 individuals with a developmental disability live with and receive support from a person or persons who are not disabled," Community Living's report states. (The figure does not include people who live with their families.) "Since 1991, the number of individuals using this type of support has increased by 387 per cent and continues to show steady growth (13 per cent since 2002)."
While those who participate in the Parent Support Group for Families of Mentally Handicapped Adults Society hope Community Living funds more individualized options, they wonder whether decreasing the number of group homes is driven by the government's desire to cut costs.
"What they've been trying to do is encourage staff in group homes or other organizations to take on [home sharing]," said Gwen Lee, president of the Parent Support Group and mother of a non-verbal autistic son. "For some people it does work--people who can talk, who can socialize, who don't mind change--but it's not meant for everybody. We realize it's a lot less money for them. But what's the point if it doesn't meet the individual's needs?"
Sally Greenwood, director of communications for Community Living B.C., said any money saved would be a bonus. "But the primary reason for doing it wasn't we've got to go out and close group homes because we've got to save money."
To encourage innovation among service providers, Community Living B.C. offered a grant for agencies that work with the developmentally disabled to propose expanding their living options or implement new residential services.
No service providers in Vancouver received the grant. Greenwood said the agency received limited applications from agencies in the Vancouver area--she wasn't sure why--and none of them met the grant requirements.
Developmentally disabled individuals have had problems moving from an unsuitable group home to a new home partly because of funding ties to service providers.
Of the 2,435 individuals who participated in the review, 170 wanted a different form of housing. Starting next spring, Community Living will work to make the funding of group homes more flexible to give individuals and families more choice in choosing housing options.
Will parents caring for their developmentally disabled adult children at home be consulted about the kind of help and housing for their children they'd prefer?
"Not at this point in time," Greenwood said. "That may be phase three or phase four."
© Vancouver Courier 2007
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LETTERS TO THE EDITOR
Parents of handicapped adults story strikes chord
Vancouver Courier
Published: Friday, July 20, 2007
To the editor:
I want to thank Cheryl Rossi for bringing the plight of parents of mentally handicapped adults to the public's attention ("Future tense," July 13). My husband and I are the parents of a 32-year-old mentally and physically handicapped woman. After being on a wait list for seven years, she finally moved into a group home several years ago.
She would not do well in adult foster care. As a member of the Parent Support Group for Families of Mentally Handicapped Adults, I would like to commend Gwen Lee, Janice Reithofer and other members for working so hard on the dilemma faced by so many families needing help. There is a maxim that says, "a nation is judged by how it treats its most vulnerable citizens." Our sons and daughters are handicapped through no fault of their own but our society and our BC government are failing them badly. Families of mentally handicapped adults need hope, and must have the option to choose the type of care that best suits their particular needs.
Karen Menges, Vancouver
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To the editor:
I would like to thank Cheryl Rossi for her article on the Parent Support Group and parents who are looking after their adult disabled children at home. The article was well-written, well-researched and, unfortunately, all too true.
I was particularly impressed she chose to profile two single male parents. As one of the men said, "Women will sister, men don't." I have found this to be very true. For quite a few years, I was a single parent looking after my mental and physically disabled daughter while working full time. My life would have been more difficult were it not for the wonderful women in my life.
I am now remarried to a caring man who has willingly taken on the responsibility of having a child who we know will live with us for the remainder of her life. With the lack of government funding for residential options, we are aware it is unlikely she will have the opportunity to live apart from us. I am fortunate to have a husband and good women friends. Many others do not.
Roberta Bavis, Vancouver
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To the editor:
Re: "Future tense," July 13.
My heart ached when I read about the couple in Kelowna who killed their disabled son and themselves, after those hard-hearted tightwads in Victoria denied their request for financial assistance to help them care for him.
Just the day before, I had heard Finance Minister Carole Taylor proudly announcing that B.C. has a much bigger "surplus" than expected. I wonder how much money they "saved" by denying desperately needed help to those who are suffering, even as they gave themselves a 29 per cent pay raise.
What a despicable lack of values they have.
Tom Trueman, Vancouver
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Injustice shameful, story outstanding
Vancouver Courier
Published: Wednesday, July 25, 2007
To the editor:
This is to commend your Cheryl Rossi for her outstanding story "Future tense," July 13. It was very clearly explained to all of us the plight of older parents, caring 24/7 for their disabled adult children at home, and how these parents are penalized by not receiving the same support for their children as those in group homes.
It's heartbreaking and shameful to know that we as a society allow this injustice to happen.
Nina Pickburn, Vancouver
+ + + + + + + + + + + + + + + +
Sent: March 22, 2007
To: BC FamilyNet Society
Subject: Funding for post-secondary education (Comments regarding Oct. 9 letter sent to MLA H. Oppal below)
As you know, different autistic individual has different needs. One thing in common is they need understanding from our families, our schools, government agencies, our society, etc. Without proper understanding, money would be spent in the wrong place.
Our universities have trained special need teachers. After I have shared my experience with a group of special education student teachers who were social workers or regular teachers prior to taking special education, I suspect their training is one-sided. I have the impression they are trained to deal with students with less ability to learn. This impression is further reinforced by my own dealing with my son’s high school counselor. She told me the school is not a place to help autistic students who have achieved average to above average standing in schoolwork. She missed the social stress this group of students suffer each day in school. Many autistic students drop out from school not because of their lack of ability to learn but the inability to cope with the social stress.
At the college and university level, there are no bullying and no special education professors. Social stress does not decrease. The disability resource centres provide many accommodations, such as extra time and separate rooms for examination, note takers, etc. However, there are counselors who would not grant or recommend accommodations when they do not see physical disabilities. Parents of autistic students often have to intervene. Quite often, it is the beginning of another round of getting new medical letters, interviews, assessment, etc. Of course, there are counsellors who have more knowledge on Autism. Problems are easier to manage when the students are assigned to such counsellors. With the current advancement in communication, one would think the accommodations granted could be transmitted electronically to the professors. The students have to present the accommodation letters to the professors before or after classes in a line up with other fellow students. The student would explain or discuss his or her situation in public with the professors. My son finds this process very humiliating. When a student drives up to see the professor in a wheelchair, usually there are no questions asked. When an autistic student approaches the same professor with the same intent, the situation always carries some degree of surprise or suspicion. Unlike high schools, parents could only discuss their children’s situation with the universities without their children’s written permission. Direct discussion between parents and professors is rare.
Application for a student loan is also biased against students with disability. The application stands a better chance to success if the student lives on his or her own. Otherwise, parents’ assets and income are used for calculation. Most students with disabilities live with their parents because there is a need to be cared for at home. Unfortunately, this need is overlooked.
Most scholarship application including scholarship for disable students insists on volunteering work or work involvement as a criteria. For autistic students who naturally do not have the ability to engage socially, are automatically disqualified from taking part in the process.
When my son graduated from high school, there were no counseling on continuing education or employment training for students with special needs. Today, he is approaching a similar milestone. Before April 2008 when he graduates from university (in the lower mainland), could he find the same guidance he needs? Housing and employment are pressing issues.
Over the years of caring for disabled children, many parents have missed many opportunities in their own lives, such as advancement in their careers, spending less time caring for other children in the same family, etc. I have to finance my other son, who lives away from his autistic brother. When I visited him in another province where he is doing his postgraduate studies last month, he casually said to me, “Dad, usually, parents would only kick out their bad children. I do well in school. I behave well. I am awarded many scholarships from universities. And, you kick me out of my home.” When one’s own family cannot understand the difficult situation at home, it is beyond hope that others would understand.
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Sent: October 9, 2006
To: Wally Oppal, MLA, Shirley Bond, MLA (Minister of Education)
Subject: New Funding for autistic students
Dear Hon. Oppal,
Please allow me to congratulate BC Government’s latest funding for students with autism. The school districts will
get $16,000 per student per year.
Being a father of an adult autistic son, I know it first hand how difficult and almost impossible to get any services from
the school when my son was younger. With this new funding, the struggling families will get some extra help for their
children’s education.
My autistic son is currently attending university. He and his family are going through the same difficult and helpless
situation as when he was in high school. This new funding will have no effect on any autistic student studying in post
secondary institutions. I am asking our Government not to forget this group of special need students. Despite of their
challenges, they have earned with great difficulty a place in our colleges and universities. Please provide this group
of students with the necessary assistance.
Regards,
(name withheld)
Note: On Oct. 12 The Minister of Education replied to the above letter that the Ministry of Education is responsible for Kindergarten to Grade 12 and as this matter fell within the purview of the Ministry of Advanced Education, it was forwarded to Advanced Education for their consideration.
__________________________________________________
Sent: March 01, 2007
To: info@bcfamilynet.org
Subject: Re: Concerns CLBC
As a family model home provider I am concerned about the lack of support this new model provides. When our clients are ill we are to call into the office and whoever is on intake that day will hear our concern. The worker often will not know anything about our clients and worse, sometimes it takes days for a worker to return our calls. We as family model home providers feel vulnerable and out there on our own to deal with issues when they arise.
Another concern for many caregivers in our "family model home" is that we don't feel we have a voice to be HEARD and we feel we have to just keep working in hopes that issues work themselves out. We need a support network not only so we have someone to reach out to but also to have someone to go to so we can voice our complaints concerns and issues and feel that we have at LEAST BEEN heard. We are the FRONT Line workers out there. We live with our clients 24/7 and we have ABSOLUTLEY NO ONE to turn too with this new model, no one to support us, no one to advocate for us--NOTHING. In my view this is WRONG and a HUGE HOLE in the entire program, which should have been dealt with first!! We have no one to call after hours or on weekends so we have to use our best judgment and make sometimes life and death decisions and pray to God we make the right choice. This issue is huge and needs to be addressed ASAP. If you think about the possibilities of anything going wrong before this issue is rectified, it is down right frightening.
Respectfully
Family Model Home Provider
(Interior, BC)
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Sent: February 21, 2007
To: Maurine Karagianis , MCFD Oppostion Critic
Cc: BC FamilyNet Society
Subject: Community Living B.C. (CLBC)
Feb 21, 2007
I am a parent of a group home resident in B.C. Shortly after CLBC was created we began hearing rumors that group homes would be targeted for closure due to their high operating cost.
For the parents of a very high need Down’s syndrome daughter who had recently entered group home care, this “news” was very distressing to say the least.
We made numerous attempts to meet with our MLA’s , Hon. John Les and Hon. Barry Penner, to express our concerns about group home closures and the impact that Liberal budget cuts were having on the agency and in their community. However, we were in effect ignored for over two years before we were finally granted a 30 min. audience in April 2006.
At the meeting we asked Mr. Les to discuss our concerns with Minister Mr. Hagen (MCFD) as soon as possible. We were given assurances that this would be done. Also, we were assured that the rumors of group home closures were unfounded and that “no group home would be closed”.
Nearly a year later we have had no response from either MLA regarding our request to meet with the Minister of Children and Family Development to discuss our concerns. However in the past year CLBC after claiming there was not an extra dollar in its budget for programs, found $ 1.7 million to conduct a Residential Options Review of the Province. The review, which I believe is not yet complete, was billed to group home residents and their family members as “driven by CLBC’s desire to offer choices to group home residents”. However it soon became apparent that this review was in fact driven by cost cutting since the only options presented were those which involved a resident moving to a less costly form of care. We felt that the CLBC “team” that spoke to us was in effect there under false pretense. During the Residential Options Review presentation we were assured that absolutely that no one would be forced to leave their group home.
However, before the Residential Options Survey is even complete, CLBC has issued a draft Service Delivery Plan which indicates up to 100 group homes will be closed in B.C. Even more troubling is leaked information that a CLBC official made statements about closing every group home in B.C. It seems the cat is out of the bag. At this point in time, the assurances of “no group home closures” given by Mr. Les last April appear naïve at best. CLBC seems determined to create and perpetuate the myth that anyone in staffed residential care could be accommodated in some less costly setting, for example, Family Care. This is quite simply not true.
Closing group homes would be a disaster for residents who in effect typically do not have the capacity to make informed decisions about their own safety and wellbeing. Also, it would be a betrayal for their families who in many cases, struggled for years, to establish safe, stable and nurturing group homes where special needs family members would be able to interact with the community and have every opportunity to live fulfilled lives.
I sincerely hope that you can find a way to stop the regressive movement in CLBC/MCFD that seems intent on “experimenting” with the lives of B.C.’s most vulnerable and defenseless( and non-voting) citizens in order to save a few dollars.
I am also forwarding, via separate e-mail, a copy of a letter written to Minister Les and
Minister Penner in April 2006. I have never received any response to this letter.
Thank you for taking the time to read about our concerns.
(name withheld)
____________________________________________________
Sent: Saturday, February 17, 2007 3:04 PM
To: M.Karagianis, MCFD Opposition Critic
Subject: Cuts to People with Disabilities (response to request for stories for govt.budget debates)
I was thrilled to get your e-mail. I now have an ear to voice my concern to. I am appalled at the Governments cruel cuts to People with Disabilities and to the front line staff who support these people in a variety of ways. Individuals cannot afford to pay for the podiatrist, optometrist and the dentist. These "perks" were taken away from them the first round of bargaining that the Gov't did with Social Service Sector 4 years ago. Individuals cannot afford to buy depends, creams and some medications that they require on a daily basis to live a "normal" life. These "perks" were taken away too. There are wait lists for day programs, work experiences, respite and home settings for these same individuals. People who turn 19 have no "new" money to access for any of the above and so they go from school full of promises to sit at home and waste away into depression and in some instances react in violence to their parents from frustration.
Individuals cannot afford to take a vacation as they have no money to go. These same individuals can't stay home from their day Program or work experience, as they do not have the staff at home during the day from 8-3pm to take care of them. Instead they go to these day activities and pass on their illness to everyone else and it just goes round and round. Someone is always sick and some staff is always away from being too ill to come to work. These staff members cannot afford to be away so much as they are not paid 100% for their days wage that too was taken away from them. There is no staff to relieve for holidays or sick time anyway as there is no way to hire staff with the qualifications needed to work in this field. No one stays if they do apply. This work is hard and thankless. The staff who have been in this field for more than 3 years are not here for the money, they stay because of the individuals. This is used against the staff when they want to stay home sick, take holidays or complain of the unsafe work or work load issues. The managers say, "think of the individuals - who will take care of them?"
The staff who take care of some of the most violent and fragile individuals of this province are not recognized as a "Profession" regardless of the education they have to have to work in this field. The individuals that the staff cares for are not recognized as being people. Someone has to stand up for them and I hope it is you. I speak up for all of those who afraid or unable to speak for them selves. Will you not stand and speak for me???
Louella Vincent
__________________________________________________
Sent: February 14, 2007 To: M.Karagianis , MCFD Oppostion Critic
Cc: info@bcfamilynet.org
Subject: clbc
M Karagianis;
I am a support worker in a group home where four individuals with complex disabilities live. Since CLBC has taken over from the Ministry I have witnessed the cuts to direct services to people with disabilities. All Agencies falling under the CSSEA umbrella have had to go through a very expensive accreditation process through CARF, (an American concept for service delivery standards), that has cost the Government and our Agencies incredible amounts of money as well as an outstanding amount of hours and energy to adhere to. None of this money was necessary to support people with disabilities at the same time as the cuts to services were being felt by the people supported and the people who support them.
All of this has happened while CLBC has planned to close group homes across the province. We all know this is a money saving move rather than to benefit the individuals in care. Our agency supports individuals who are in their later years, and who have lived with roommates who are in many cases the only "family" they have and have experienced their lives with. The people who we support have in many cases, have no known family and so we are their advocates, as well as their support people. These people deserve to live their end years in their homes with their "families" the same as you and I.
The plan of CLBC is to move everyone in care into "family home provider" residences, in other words adult foster care. My question is "What happens to people when their failing health does not allow them to live with a family?"
We have just experienced one individual moving into a senior care facility, (in spite of our objections), and the impact that person is having on the other seniors she now lives with is unbelievable. The people we support have many behaviors and issues that do not easy allow them to live in the close quarters with frail elderly people, and the impact on that system will be unacceptable to most.
I implore you to question the mind set that would so impact so many people just for the sake of saving money at the same time that the Olympics is siphoning so much money out of our failing systems
Since I have worked in this career, I have felt the constant threats of closure, and cuts and changes in philosophy, and the people we support and the ones who support them have struggled to carry on in spite of all the turmoil that swirls around us. Please speak for us, and let us do our jobs in supporting people who we care for and give them piece of mind that they can live where they want, even if it isn't in CLBC plans. There have for far too long been too many people involved in their lives, who aren't involved in their lives.
Sincerely,
Support Worker
__________________________________________________
Sent: Tuesday, February 13, 2007 8:34 PM
To: M.Karagianis, MCFD Opposition Critic
Cc: info@bcfamilynet.org
Hello, I have a story to share with you regarding CLBC.
I am mom to a 4 1/2 year old son who has Down syndrome. Ever since he was born, I have been on the waitlist for respite services, but let me give you some details.
My son was born when we lived in Coquitlam, in 2002. At that time, we were put on 'the list' to receive respite services. During that time I suffered from severe post-partum depression, which was later diagnosed as clinical depression. I had suicidal thoughts and my family suffered because of my 'condition'. There was no help to be had except the usual drugs.
When my son was 2 1/2, we moved to Campbell River. I was immediately in touch with the CLBC offices to transfer the (unseen) services from Coquitlam. After playing phone tag, and waiting endlessly for someone to return my calls, I gave up as I found the battle added more stress to my already stressful life (which did not help the depression, which had lifted but always felt like it's just under the surface, ready to rupture again).
In September (approx) 2006, I picked up the phone to resume the battle for respite. At that time, and still currently, my husband and I have precious little time to re-connect and my marriage is suffering. My daughter (just turned 7) loses out for attention constantly because of the higher needs of my son.
After a time of phone tag, we finally had an appointment with an 'in-take facilitator' in Campbell River. She, however, was unable to make any decision. She was required to pass everything on to someone in Nanaimo, to have our case reviewed and decided upon. Sometime in October I received a call from Nanaimo that said, "so sorry, our budget for the fiscal year is used up, so we will have to wait and see in April. We MIGHT have it then. But the good news is, we've backdated you on the waitlist to when you first contacted us'. (Two years prior when we first moved to Campbell River. And that doesn't take into account the 2 years in Coquitlam we never received services either.)
Later in November I received a letter from the CLBC office in Port Moody that required a phone call back by November 30. I phoned the person on the letter who returned my call a week later but I was out. I called again, waited 3 weeks and called again. I received her voice-mail, which was full, and not taking any messages, so I left a message with the phone operator. Another 3 weeks passed and still no response. I called again and again there was no 'space available' on her voicemail. Again, I dialed '0' for the receptionist and asked for her boss. After filling him in on the lack of response of the previous employee, he told I shouldn't have received this letter if I lived on Vancouver Island. I also expressed some of my frustration with the whole system regarding my wait for respite. He gave me the name of another person at CLBC in Nanaimo to call regarding the extensive waitlist time.
I called that person and he responded promptly (wow, first time for everything) and said he would look into it and get back to me soon. I waited almost a month and then called again. Finally in mid February 2007, I received a call letting me know that some funding for self-directed respite has (suddenly) become available, and I would be receiving respite services. I was also informed that receiving the first cheque could take a bit longer than usual due to the move and disorganization of the Victoria office. (It's now mid-march and I'm still waiting).
In short, 4.5 years of waitlist, numerous phone calls, mostly unreturned, and untold frustration and stress. Why must parents/caregivers of people with special needs have to fight so much when our lives are stressful enough as it is??? If parents split up, or worse, become incapacitated themselves due to stress, does CLBC not realize that this would burden the system far more than if they could provide us with the right services WHEN WE NEED THEM? Also, there is a substantial lack of respite workers/homes available to us even if we do get respite services.
On a side note, there was another family that moved here in September of 2006 from Alberta. They received respite in December of the same year, while I was still on the waitlist. WHAT'S UP WITH THAT?
Signed,
A frustrated parent
__________________________________________________
Sent: February 14, 2007
To: info@bcfamilynet.org
Subject: Requested Comments
We are very thankful to have our son cared for in his own home and the partnership of family, micro-board and the contract funding support we receive. This all works to provide the best holistic and healthy environment for him and our family. The challenge is to be able to acquire
quality caregivers when we are not at par with other funded agencies. We have not had an increase in our contract since it began in 1997. In fact we gave back 1% along with all the other care providers when we were asked to do so.
We do the best we can to provide consistent staffing for our son but becoming more difficult to attract people without the wage and benefits that are given in facilities. This model is an excellent
One. We have had several students do their practicum training with us and they would like to work in these home environments but we are not able to offer what the public sector does.
Port Alberni, BC
__________________________________________________
Date: 1/26/2007
To: The Province Newspaper
Subject: Stanley Park
I am delighted about the millions of dollars thus far given to restore Stanley Park to its former grandeur. There are so many people concerned about the devastation of Stanley Park, that they have managed to raise all this money to put back what an act of nature has taken away. The coverage on the news and in the papers has been endless.
I am deeply saddened that the devastation on the Social Service Sector has gone largely un-noticed by those same people. The Government has taken 70 plus million dollars from some of the most vulnerable individuals in Society. This was dollars that were desperately needed to fund day programs, group homes, women's centers, child caring and senior services.
No one fund raised, no one wrote letters (except families, front line workers and a few recognized professionals) there was little newspaper coverage of this devastation that wrecked havoc on so many lives. It has been painfully quiet in comparison.
Where have we as a Society come to, when sisters, brothers, parents, grandparents and children can be so violated and we say nothing? We have millions of dollars to spend on everything but people. I am ashamed to say I live in British Columbia with those who say nothing to fight for the rights of those less able. It is time to stand up for those who can not stand up for themselves. Put back the money taken by an act of Government. Demand that the Government restore previous necessities of life for those less able than ourselves.
Louella Vincent
__________________________________________________
Jan. 5, 2007
BC FamilyNet received a copy of the following letter sent December 13, 2006 to:
Honourable Carole Taylor, Minister of Finance.
Re: Family Care Provider’s Plight in BC
I received a request from you for feedback on budget issues. I completed the request online and was dismayed to find that I was given only 5 choices where some money could be “found” to address the priorities I identified. I did not agree with any of these choices, but was forced to choose one in order to complete the survey. I am now taking this opportunity to write to you so that I can share some of my concerns about the lack of funding for supports and services for people with developmental disabilities. BC has experienced significant economic success as the surplus indicates however many people with developmental disabilities are not getting the support they need. I would like to tell you a little bit about the lives of a few of these people.
I have been a family care provider in supporting two ladies in my home. The two ladies I currently support have been living with me since 1999. One lady is 49 and the other will be 82 in January. I have taken them on vacations with them paying their own fare only. I have not charged for any caregiving or food when we have been away. If these gals are supported by someone else when they go away, they have to pay the caregivers way as well as some support time (usually shared with a group of clients). My people eat the same way as they always have, and we take them to appointments and drive them around with the cost of gas at $1.00 per litre, etc. They are treated as family members.
I have just been given yet another contract at the same rate I have been paid for the past several years. This year, I am signing it under protest. I have been verbally protesting my contracts for years now, and have always had to suck it up, because “there is no money”.
The 81 year old lady has many health issues, including Ostoeporosis, GERD disease, Arthritis chronic pain from deteriorating disks in her spine, scoliosis, as well as other issues relating to age. This lady has communication difficulties and cannot be left alone. She uses a walker daily, and sometimes a wheel chair, depending on her mobility, which is very often impaired by pain. Because of this she is set up in a 4 day per week program with a trained one to one worker, and one day per week at a leisure days program, which is provided by another service provider. Since the one to one day program was instituted, I have been given $750 per month to purchase this service. At 6 hours per day, not counting Statutory Holidays, when my lady is at home with me, this works out to $7.51 per hour. The respite worker comes to our house, and takes our gal out into the community, and visits other people and programs during the day. They often go out for lunch or shopping. The caregiver is very sensitive to this lady’s health and emotional needs and has been working for me since 1992, when she did similar work with a previous client of mine. About 2 years ago now, I raised the one to one’s worker to $60.00 per day. The worker pays for her own gas and food, and because of the increase in fuel and her other costs, I couldn’t have her work for less. $60.00 per day is very reasonable to get this quality of care for my lady. I have asked for the difference in my costs for this from this point on, not retroactively, and have been turned down. I just found out today that the company pays $17.52 per hour plus benefits for respite care for other contractors doing the same work through the company.
I have taken them with me on a cruise to Alaska, 3 trips to Disneyland and other shorter trips. We take them camping with us in the summer. Neither one of my ladies visit their families for vacations. One went once for a cruise with Mom. The other, I have taken her and her family on a cruise, and over to Vancouver Island, and had them visit at home here with her sister several times.
It is difficult to go on a separate vacation, as I need to pay respite for someone else to look after them when we go away. Since 1996 I have had 3 vacations without my ladies, one 5 day, one 1 week and one 3 week vacation. If I don’t take them with me, it costs me $250.00 per weekend for someone to come in and look after them, plus food and gas for all of them. It costs me $1,000.00 per week of care plus food and gas for them. This is true for many family care providers. Most jobs would cover at least a 2 week vacation period. That is 10 years without much in the way of holidays. I simply cannot afford to pay for a holiday plus respite and expenses. It is a long time when you support people 24 hours a day with only a six hour break on weekdays.
If we do not have respite, it makes us stale. Everyone needs a break sometime. We have our guys 24/7 except for day programs. We do have them 24/7 weekends and holidays. The younger lady visits her family overnight, very occasionally, the other never does. The younger lady has just been at home for the past 6 weeks recuperating from a total hysterectomy, necessitated by a growth in her abdomen. This lady has high emotional needs and severe anxiety. I had been turned down for any extra respite during this time. I have managed to get some extra mental health support for her through the years. After the recuperation, she had a very difficult time transitioning back to work at her regular day program. I ended up in Emergency myself, through a serious anxiety attack where my blood pressure was 196/106. This has never happened before, and after examination by my family doctor, it would appear that this was stress induced. Following my trip to the hospital, I was granted paid respite for my lady for 1 week.
My daughter moved into our basement suite in May of this year, leaving a funded vacancy at the group home she was living in previously. Her boyfriend of three years moved in in June of this year, and is a great addition to our family. He was supported in pri care previously. They pay us $800.00 per month from their PWD benefits which were decreased from $856.42 individually to $1,469.06 as a couple, because someone has decided that two can live cheaper than one. This includes their utilities and food.
I do not expect to get any compensation for my daughter, and I have been turned down for any support for her boyfriend. He has epilepsy (with drop seizures) requiring him to wear a construction helmet so that he does not injure his head. I take him to doctor, dentist and other appointments, help him with his banking, and have arranged to get him a custom helmet that will not fall off during a seizure, and basically done life skills and whatever support he needs. We will continue to do this because he needs to have this done. His needs were considered serious enough to pay someone to look after him prior to him coming to live with us.
I have just celebrated my 62nd birthday. I have no pension, other than Canada Pension, no benefits of any kind, and am going to have to work for much longer than the normal 65 years after which most people expect to retire. I volunteer countless hours and taxi people around at my expense, because I love these guys and just want to help them out.
The union that supports people with special needs was given a signing bonus of $3,000, and has been receiving cost of living and other increases through the years since 1990, when I first started caregiving as a profession. They have extended medical, dental, eyeglass and other benefits for themselves and their families. We do not.
It makes me very angry when I hear of signing bonuses, cost of living increases, benefits, etc. I have lived in this province all my life, paid taxes, always supported my community and my government, and I love my work.
I really believe that if government expects us caregivers and the people we serve to live on less, and "find efficiencies" that government should be doing the same thing. After all, we are also responsible for the success of this province.
Perhaps MLAs could take a reduction in their salaries, like all of us in Community Living have had to do. According to STATS CAN, there has been a 21.5% cost of living increase that has never been addressed in my contract, which means that I am making 21.5% less than I was 5 years ago. Obviously Government has recognized the need for an increase in MLA’s salaries. I feel like I have supported this province very well, and have always tried to be very professional in my work. I feel as if my work in giving direct care to people is certainly as important as MLA’s work in running the government.
Perhaps specific lottery funds could be allocated to help fund Community Living BC. They are allocated to help fund amateur sports and other activities. It seems to me that it is an absolute travesty that persons with disabilities are being supported below the poverty line, especially when there are two living together and they have to endure a cut in their persons with disability benefits of almost $250.00 per couple. Very many of these folks have to rely on the food bank and charity from others to survive. There are so many out there that are not connected to any support.
