B. C. Disability White Paper Consultation

Online Public Comments

Topic: Personal Supports, Aids and Devices

Please note that these comments were moderated and published according to the Moderation Policy and the Terms of Use guidelines in place at the time of the consultation.

2013-12-03	First of all, people on PWD don't have enough money to live on, to eat properly, to dress, heat homes, etc. Those of us who need orthotics or other equipment must see a doctor, pay the fee AS the doc also charges the govt. for office visit. Unless the specialist (orthotics in my case) is located in a hospital, Gov't will not pay for long distance mileage costs. Sure we are allowed to earn extra per month. First find a job in an economically depressed area likeprinceton. I cannot drive in the winter. The local employment office has NO IDEA how to help a PWD get a job. She told my I was the first person with a disability she had ever met. I go hungry a lot, though I am overweight-starch is still the cheapest thing I can buy. Am often cold because I can't keep up with the cost of firewood or hydro. I am often in pain. There are no viable work at home options, which would be ideal. I shop at thrift stores and cheap places. Don't smoke or drink or drug or go out. Much. At that,I have a brother who helps me. No homemakers, services were cut. Am grateful for the taxpayer's largesse. There is no point in band-aiding. We don' need more studies. We need action. The govt ALREADY KNOWS THAT MOST PEOPLE ON PWD ARE LIVING BELOW THE POVERTY LEVEL. I am too old to participate in the savings program, even if I had any money to spare. I can't think that anybody would choose to live the way many of us must. It also does not help when government officials treat us like parasites. I hope this is not just another sop to government conscience. Would be pleased to talk about this further. Have emailed Ministry before, was sloughed off with no answer to my questions. Sincerely,
2013-12-03	How many of the people compiling this white paper are persons with disabilities? What will happen to the white paper? Will it be shelved like a lot of similar papers?
2013-12-03	I would like to see more incentives to hiring people with disabilities, including wage subsidy programs with employers that intend to retain their new employee rather than let them go after 6 months once the subsidy is no more. PWD clients could benefit society and the government with long-term employment outcomes if the policies and employers guidlines could be negotiated effectively. The PWD rates do need to go up though, if low income seniors get more than the disabled with federal programs, something is definitely wrong with this picture. Also, the difference in rates with our neighboring province, Alberta, is a concern. 1588 vs 906 (with some incentives, but still way lower) I would appreciate that my comments are posted, I wrote a lengthy comment and it did not posted, extremely frustrating
2013-12-04	I am on LTD with Extended Medical. Depending on what you plan covers , medical equipment purchases even if the plan covers a portion may take away from essential living expenses. In my case my plan will give me one wheelchair per my existence and I have to pay portion for fixes, again nothing is affordable and cuts into my essential living expenses. There is no equipment that is a reasonable price. Why is all equipment from hearing aids to side stix so expensive. One cannot assume that everyone is on government disability, there are other scenarios to consider such as LTD extended medical, retired seniors....
2013-12-04	Homecare - I am on extended medical which is just enough to live on my own. My plan does not cover homecare and I have to pay for each visit cutting into my living expenses. Should the formula financials that determines whether one pays or not be looked at.
2013-12-04	To be honest I would rather have my husband look after me then 90 different care workers. Over and over you have to repeat how!!! Why can we not be assigned a few, that would make it easier on everyone. Going back to husband as a caretaker, who better. They need to be recognized financially, they give up their career to look after a loved one.
2013-12-04	Government disability, one can earn a certain amount of money w/o having to claim. My extended medical I cannot earn a cent w/o claiming. The money I earn gets taken off my ext. medical. There never is anything more, at least the government disability allows for a little.
2013-12-04	I'm a parent of an adult with special needs and certainly what they are given to live on from PWD is not enough. My daughter has high needs she requires full 24 hour care. The main issues we face have to do mostly with medical, however I believe Transportation should also be considered. The main issue we have is getting certain prescriptions covered, if the Doctor recommends a special drug combination the Government medical will not cover it. There is also the issue of Orthotics, my daughter wears splints and every time she needs to have them reviewed or requires a new one, we must take her to the the Doctor, fill in forms which we must get from the ministry and eventually once it goes to Victoria and gets approved we will then be able to get the orthotics. There is a lot of 'red' tape surrounding this process for someone who requires splints all the time since she was about 4 (now 23). The fact that the Government has decided to tighten up on their expenses regarding Orthotic work, they did not consider the cases that always require approval and as such lumped us in with those who might be taking advantage of the offer of Orthotics. The other main issue is dental work - my daughter grinds her teeth and as such needs to see a dentist regularly. The allowable funding for a dentist is ONCE every two years. In the case of my daughter she must undergo general anesthetic to have anything done in her mouth even just cleaning... needless to say she has already had 6 root canals due to the grinding down of her teeth. The sad reality is that not only can she only be seen every two years - there is a 9 month waiting list to get in to have the work done or teeth cleaned. Currently she has a wisdom tooth coming in and the sad fact that she cannot vocalize when she is in pain is frustrating for us since she still must wait on the wait list for all this time. Transportation with handi-dart is gratefully accepted and it is amazing to have that service, however, cut backs has affected the amount of support given and this is vital to our special needs adults to be part of their community, day programs etc. A possible assistance would be to receive some support for our own adapted vehicle or gas allowances.
2013-12-04	I am a young person and deserve to be bathed more than once a week. How can one's self esteem be downgraded. Hygiene should be at the top of the list. I am 100% a wheelchair user with bladder issues that require proper hygiene. A UTI could be fatal but I am only allowed one bath per week and I have to pay for it. As well being very immobile my legs and feet are very swollen which would also need tending to with hygiene. My question to everyone doing the white paper would be how many times a week do you? Why should someone be left to feel dirty? Personally to participate in community activities one should be confident and feel worthy and clean.
2013-12-04	I have a very hard time regulating my temperature because I am in a wheelchair 100% of the time. Even in the middle of the summer never mind the winter. The last thing I need is to catch a cold or get pneumonia from going to a community bath. I have a list I have a bath chair but Homecare still will only give me one bath per week. To have wet hair and a cold can is ridiculous. Maybe certain people can do acommunity bath. Not everyone fits the cook book perscription
2013-12-05	I have an adult daughter with an invisible developmental disability. She will require an advocate to help her with any interactions with government employees as she has severe organizational and memory problems which are invisible. The reason she will need an advocate is because of treatment she will probably receive at government offices as people do not see her disability. I am worried for her future. I think people with disabilities should have a separate place to go when in need of assistance and the staff at those places should be skilled in empathy and patience. I am hoping someone is understanding this and others with the same problem.
2013-12-06	I'm a soon to be twenty two year old man, with a disability which is Cerebral Palsy. I am student at Okanagan College and sometimes chair our Self Advocacy meetings. We need more support as far as wheelchair accessibility in the Okanagan. I have a high work ethic and try to participate in as many activities as I can. To participate in a specific social event I would need to have more wheel chair access. I am happy with my assistive technology and support system.
2013-12-06	The dental needs of a person with a disability is not being met. Despite such a small monthly personal allowance, and for many an inability to have an income, dental coverage is minimal. Regular cleanings are covered 1X/year, and for clients I support, they still pay for part of that single cleaning. And they generally struggle with proper brushing and need more cleanings not less than you and I. Dental coverage is not isolated either as their are many many medical products or procedures which do not get the required coverage to maintain respect and dignity for themselves.
2013-12-06	There are a few "best places to live" for people with disabilities but Canada is no longer one of them. There are some states that have 100% community inclusion (Vermont) and others that are very progressive in how they approach people with disabilities and their families (Minnesota, New York), but the 'best' jurisdiction I've seen is in Norway. There, legislation dictates that every citizen is entitled to at least their own room and own bathroom. If people can't afford this, then the government provides an apartment, space in a group home, or other living arrangement so each person has their own room and bath, fully funded and very acceptable. Many people ride bikes and there is a great public transportation system, so people are not home bound. There are also in-home and other care services and many family support options. In Norway, if you have a "right" to something, the government provides that something if people cannot afford it. Norway is wishing they could solve the employment problem, but the reality is that people have a right to a job, but employers have a right to expect high productivity and opportunities to make a profit, and that is an issue everywhere. But if people with disabilities don't work in Norway, they receive a reasonable income and guaranteed housing. So to make BC the best place for people with disabilities, we don't need anything new or fancy - just accessible housing, transportation, access to a reasonable income, access to care supports as needed, access to employment, access to healthcare, recreation, social opportunities, education - just like the rest of us!
2013-12-06	My son has congenital muscular dystrophy and since six months has needed a variety of very expensive orthotics and mobility aids. $1500 for a helmet, $1200 for splints yearly, $2500 for a walker, bath seats, seating for his school, large sized stroller, wheelchairs, van conversion. This is just in his first five years of life. If it wasn't for charities providing funds for these aids he would have a much lower quality of life and be disformed. Extended pharmacare only covered his helmet at six months old and any prescriptions he has needed for when he gets sick. Better funding of pharmacare would be a huge help. His need for new orthotics once or twice a year is a huge drain on funds. I can't even imagine what it will be like in 13 years when he turns 18 and no longer qualifies for much of the help he receives.
2013-12-07	I agree with an acquaintance who said, "We don't need another White Paper to know what people need. Let's start with putting that money towards increasing disability income!! No one can live on $700 to 900 a month without (undeclared) help. And then a Food Bank - ours, much to most people's surprise is a "crisis" food depot where you need to be apply everytime you are in need and don't qualify for a Christmas Hamper unless you have used the depot in the past year! There are so many needs facing our people with hardships. Accessability is just one, a big one, but only one." It is nice that we are allowed to make extra income without it affecting our benefits, but what about those of us who cannot get extra income? It is really tough to try and live on what the government is giving us. I get a CPP disability payment, in addition to provincial disability, but every time the federal government gives me a couple of dollars more a month, the province claws it back. I've been trying to live on $830 some odd a month for nearly 10 years, with everything else going up except my income. I need to try and put back at least $200 a month for yearly expenses such as property tax, car insurance, house insurance, and car maintenance, but most months it is not possible to do that. I have a large debt on a line of credit because I can not put back what I need to cover those expenses, not to mention unexpected expenses that do come up. I'm sure I'm not alone in saying, What we need is MORE INCOME.
2013-12-07	Yes, people with so called "Invisible Disabilities" need more support and understanding by the government and society at large
2013-12-08	As a friend of person with a physical disability, I think that the disability community requires increased accesses to physical therapy (PT). My friend spends thousands of dollars a year on PT, which is very necessary to improve his physical skills. With this therapy he has improved his hand function which has increased his independence but this is a medically necessary service that he has to pay out of pocket for.
2013-12-09	Mymtheo ctMy concern is with the lack of equipment funding options for people with d with disabilities. Having worked in home health for 8 years I have watched the funding for necessary equipment, often mobility devices, shrivel and the wait lists get longer. The worse off are those who had extended health benefits until they turned 65 and were converted to CPP without any health benefits. If they were using power mobility before age 65 there are now virtually no resources for them to access. As an advocate it is taking much more of my time to try obtain the necessary equipment, time that could be better spent working with other Clients or on other goals. We need to find a way to keep our geriatric disabled Clients properly funded to meet their durable medical equipment needs.
2013-12-09	Over and over, I hear about how the supports for young people with physical disabilities decline significantly when they reach adulthood and, as the parent of a teen with a disability, I am worried about what will happen in 3 years when he turns 18. Currently we have access to equipment through the At Home Program; he has forearm crutches, a wheelchair, night KAFO's (knee-ankle-foot orthotics), daytime AFO's, a bath lift...what will happen when he is too old to qualify for the At Home Program??? Worried doesn't really even begin to describe how I feel... Terrified is closer... The government keeps slashing funding (although there seems to always be enough money to pay expenses of high-level politicians since they can't possibly cover their own expenses with their small salaries; yes, that was sarcasm)...what good is a white paper, if real positive changes for the masses don't actually ever happen?
2013-12-10	I'm wondering why i am struggling and fighting to get in the first place and then the second battle is keep the services that where available. the way your system treats me and probably a lot of others have me saying personally i hate bc. i shouldn't have to fight for medication that has benefit to me i shouldn't have to fight for services that aren't covered that need to be i shouldn't have to worry about "what if i get sick during work or school" how will i recoup from that. How do i tell the people that are helping me are making my life worse, make me feel like a pos. because i have a job and go to school doesn't mean my disabilities have disappeared. but apparently they do when it comes down to detail in the system. i am tired of catching the 21 catches with the system did you know i was homeless once and almost twice because of the services where available but not to me? why am i explaining my health concerns to a people on a board who i KNOW don't give a crap. i stand by my statement I hate BC
2013-12-10	you are going to fight every step of the way i am 24 dealing with a disability almost since 2003 and still fighting for my life when it comes to the services needed. I'm sorry to say :(
2013-12-11	I think that is an excellent idea!
2013-12-11	I know what you are experiencing. Do you know of the Community Supported Independent Living (CSIL) funding. It does allow for a family member to be paid as a caregiver.
2013-12-12	I am being to believe this white paper is all smoke and mirrors PWD rates will not go up More services will be introduced that provide great PR for the media and government in general. The reality is without financial assistance, people with disabilities will continue to suffer We do not need infrastructure, we need financial help
2013-12-12	Invisible disabilities, both physical and mental, are not well understood by most people. If you disclose your disability many people try to be empathetic but often don't really 'get it'. But that still requires that you disclose a medical issue, which you may not want to do and can infringe on your right to privacy. It's an ongoing problem to decide when it is 'safe' to disclose or not. It is not only developmental issues that effect memory, organizational skills and time management. It can also be a side effect of the medications used to treat your disability and/or illness. This appears to be even harder for people to understand and accept. It also complicates medical assessments as it can be hard to know what issues are being caused by the illness and which are side effects of the medications. It's not well reported by physicians and not accepted as valid treatment issue when being evaluated for disability status.
2013-12-12	This is true for me too. I received an honorarium for some 'work' I did with a committee I volunteered for. Had to report it as it is considered income so had it all clawed back by my insurance company, who then demanded an audit of my finances to see if I was working more than I claimed. Why did I bother being honest when it has brought nothing but harassment? The real problem though is that the 'work' I did was using skills not required for my formal employment and had nothing to do with what I am considered qualified for in terms of employment. My employer has insisted I only come back when I can come back full time (not going to happen), my insurer is saying that ANY activity that pays money is 'work' even when it has nothing to do with my former employment skills. Why should I bother making an effort to find a fulfilling life and make a contribution to society when it makes no difference to my quality of life? Both the employer and the insurer appear to want to make me a burden on society.
2013-12-12	As I don't have family in BC I have to rely on friends and neighbours. As my disability has gone on over time, friends have dropped away as I am much less able to participate in the activities we've previously shared and my life has become much more boring. It is unacceptable to me to ask more and more from my friends as I become less able to do things for myself. While my doctor continues to downgrade my health status, she has never asked how capable I am of living independently. And has never offered information on how to access home supports. I know she thinks I'll ask and/or research it if I feel I need it but it doesn't seem to have occurred to her that there is a psychological aspect to asking for this kind of help. I have always been very independent and losing my independence and needing strangers to come into my personal space is highly stressful and distressing in and of itself. Especially when there is such variability in the quality of home care workers and you have little or no say in who they are. I have had acute episodes and the first time I did have home care workers come in (which I set up for myself from the hospital and paid for privately because neither my doctor nor the hospital asked me how I was going to cope when I left hospital). One was excellent, the others were variously arrogant (wouldn't do THAT type of work), incompetent and/or incapable of speaking enough english for me to explain what I needed done. I never set up home care again and won't unless I'm on death's door and maybe not even then... Who is training home care workers? What does it take to get access to them? What are the standards they are being trained to? Who is monitoring the quality of care they are providing, especially if they are private companies and not being offered through the health authorities? How do people make complaints about these service providers and get resolution of problems?