B. C. Disability White Paper Consultation



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2014-02-03

I just found the ministry has now deleted all the info on the Designated Worker Program. Way to go, LOL.

The designated worker program is all about those PWD clients that still need a one on one worker.

Just so you all know the 1-866 welfare phone system has changed it is now based on you having a code number and a PIN number, these numbers where mailed out 5 years ago and are being mailed out again. So till then good luck using the phone system!

Funny because if you can get into talking with a human, they will ask you for your social insurance number!

You are not alone in this nightmare!!!


2014-02-04

When looking for work PWD need psychological support aswell. Being on disability for a long period of time can cause some problems when dealing with people you do not know, low self esteem, anxiety, communicating properly.

2014-02-04

Its horrendous that people with plantar faciitis have to wait 3 months for authorization from the government to get shoe insoles (orthotics). Do you know how painful plantar faciitis is? It has very horribly painful to try and walk for the past 3 months.

And you expect me to pay $75 for the appointment. Where is this money suppose to come from ... out of a magic hat??? Am I suppose to starve so I can go to the foot doctor? I was turned down for travel assistance the entire time I have been on this disability, I have to thumb to get there cause there is no bus service where I live.



I am getting more and more depressed the longer I am disabled. There really isn't much fun in my life because there is just no money!!!

2014-02-04

In order to receive help with the Fair Pharmacare you need to apply before you need the benefits. If you don't do your income tax each year you can't apply for fair Pharmacare. I had an itchy skin condition and ended up having to pay for all the creams and treatments that were not prescriptions. It totalled $500 that I couldn't afford. One cream was $85 that I got from the pharmacist and it wasn't covered under our healthcare system. I had to pay for it myself out of my disability benefit. I believe that you shouldn't have to do your income tax every year to be eligible for help under Fair Pharmacare.

2014-02-04

I am shocked at every stage of my daughters life to find there are no supports for her to become all she can be. Without being able to rely on family she would be like most of disabled individuals, poor & isolated. The transportation subsidy is not enough, her hearing aids and orthotics and splints aren't fully covered, there is hardly any money for support & food never mind for physical aid and physio or counseling, and even though she would love to participate in meaningful employment, there is no program available to support her through job training (she has been on the wait list for over two years). Of course even if she did have support at a place of employment she would have terrible difficultyto participate because she can not hear well and has gout as well as plantar faciitis, so way too much pain to stand for long periods - With proper physical support, money for the food and medicine, as well as hearing aids, orthotics and proper support she would be ecstatic to work as many hours as she could tolerate! But alas at 23 years of age she is forced to stay at home and rely on others for a meager allowance and to take her around to her appointments and meetings. There is no support given to her at all unless we show that she is in immediate physical danger. Ridiculous!

2014-02-05

I figure that, if some kind person in Princeton would give me a job that I can do, it would only take me four months to pay for the crowns I needed on my teeth last year. It would take me another ten months to work myself out of the debt I accrued paying for car insurance and firewood before the government decided that, yes, I was allowed that money. Just not retroactive to when THEY had erred! Then, maybe, I could work on house repairs and things like grab bars for the bath! Life's little luxuries, like healthy food, would come sometime after that.

2014-02-05

1) My concerns are many. One of my concerns regards children in school and their supports. I witnessed a class swimming the other day at the pool and there was one child singled out because of his ability. The rest of the class, his school mates, went off with the instructor to do their lessons while the young man went off with his aide. He was not included at all with the class, this just breeds seperation. I do understand that at times there are circumstances that there may be a call for this, but I knew the young man and he could have been included in some capacity or another. This scenario has happened many times before. How is he to be accpeted into his class group if he is not included in the activities in one way or another?

2) The other concern is regarding the funding agency. It has been very difficult to support people with the limited amount of money available, we are constantly being told about how there is a shortfall of cash and connot help. It is difficult to support people with differing abilities when there is no support available. It seems like the powers that be don't trust the front line works out there to know what an individual needs. The powers that be do not, for the most part, know those individuals that are on their case load. This needs to change, the front line workers know these people and their needs. They are also an integral part of the whole team yet are made to feel much less that that!

3) There needs to be more funding made available and supports available to people who want to buy their own home and still receive supports that are needed. There are individuals that are working hard on attempting to buy their own place, a small place, yet cannot due to the cost of a home, the cost of setting it up financially so you can do that. There needs to be something done about the amount of cash a person can have before it is taken off their cheque. It is almost impossible to save for something without it being taken away.

4) The amount of money individuals recieve is criminal! The rental market is a difficult market with ski high rentals and no pets allowed. The amount of rent charged leaves an individual or couple or family with alomst nothing to spend on food etc.



2014-02-07

Families of children with disabilities are forgotten in this system. The financial burden is outrageous and that caused the destruction of our family. Now a single mom,recovering from cancer too and raising a child in a wheelchair, I'm hit with obstacle after obstacle.

1. My child gets bare minimum therapy support on school. Has not had occupational therapy in 7 months. All real therapy for her must be privately hired and at over $100hr, that's not doable.

2. I can't get back to work as there are few upgrade courses or return to work programs that apply to me -the mom who hasn't been on EI cause she wasn't able to work on the first place and is not on IA as she gets some child support and

spousal.

3. Our biggest frustration is the school districts. They all function differently and make up their own rules for children with disabilities. Our last school wouldn't allow our child to go on a school bus without picking her up late and dropping her off early. This meant she missed over an hour of school every day. Her new school will give her a bus but not an aid so essentially she isn't safe to go on the bus alone and can't get to school. It's not like her wheelchair will fit in just any car, or a neighbor can take her, or she can wheel uphill to school. She has to depend on me to drive- the tired mom recoverying from cancer with no family help plus a funded vehicle that is a lemon that can't

be replaced as there is no other

funding. A school bus and aid should be mandatory for children with disabilities that require this personal support. They will never meet their potential if they can't get to school and their families are forced into financial hardship. Pretty hard to support your family when the only hours you can work is in between the times you have to pick and drop your child off at school.

4. Cost of childcare for a child with disabilities averages $20hr. How do I pay that? We get some funding but at that rate, it's gone quick.

5. Make all schools accessible. My child can't attend the school she's supposed to because it's not accessible. They put her in a different school and that school is over-crowded so she might be moved to another school next fall. A huge set back for her since it takes months to train all new staff.

She's smart. If only she could be given the support to meet her potential instead of red-tape bureaucracy wherever we go.



2014-02-08

I propose we get some solid support in place for parents who have intellectual disabilities. Parenting is such a wonderful opportunity that needs to be supported. If I, as a neuro-typical person, am parenting a child with a disability, I am eligible to receive respite, so my child and I can get a break and recharge. If I am a parent with an intellectual disability and I am parenting a child who is neuro-typical, there is no respite for me. There is only foster care, with it's negative connotations. I would like to see co-parenting, or family share or at least respite as options for these parents. A solid continuing system of support for the parents and the child will have long term gain for us all, not a desperation, last minute panic with the child heading to foster care.

2014-02-08

Answer:

1. Equality to services: To give those who cannot go on to post-secondary education to have somewhere to go, something to do, access to services, and equipment as if enrolled in an Adult Special Education Program. What is the livelihood for those who do not go on to post – secondary education and employment? What is the label or acronym for adults with this dilemma so I may find services for them?

2. Open door policy: Given an array of different disabilities, be open to all cases. Create a charted goal for functioning disabled to less functioning disabled.

(Some people need more some less but if their main needs are met all will be satisfied.)

3. Listen to the disabled and caregivers: Do not put spectrum of disabled under one umbrella. Create for the all a place to build character, contribute, educate, exercise, & socialize.

4. Conveying patience: Mentor or appoint someone, keep an open mind, allow new ideas, notice trouble or bumps in the road and smooth them out with the individual to both get satisfaction, and keep goals realistic.

5. Give them the resources: Open up new avenues…everyone is unique. Agencies and non-for-profit organizations collaborate with each other to fulfill the needs of all individuals. Create a media for advertise for employers, employment, caregivers, programs, inclusion, equipment reusing, and communication equipment.

6. Grant government funding: More money is needed for supporting the disabled. The ministry has outlined in “Facts & Stats”, how disabled people compare to the general public in population. Grant full funding between the ages of 18 to 19 where transition from Children with Special Needs gets funded by Community Living British Columbia. Funding from 18 to 19 years old should be as inclusive as 19 years old and thereafter. Raise the amount allowed for the disabled from $900.00 per month. Have government contributions incentives for fundraising 50/50. Give excellent tax incentives to those contributing to “The Registered Disability Savings Plan,” and excellent tax incentives for individuals or families contributing to children in permanent Foster Care or charitable not-for-profit agencies. Why should RRSP be given the most tax incentive over other registered charitable issues? People or corporations who may contribute to such a wonderful human issue should be praised. They could choose to contribute to themselves instead.

Lastly, provide families with full funding for the opportunity to stay together and not split up families and rely on Foster Home. As the present system sits families do not receive the funding that a Foster Home would receive.


2014-02-08

Answer:

1. Technology: my individual needs to be given the means of communication. Ie “Emotiv”

Funding and training of such a device will greatly increase the livelihood of this individual and have less choices made for him. Disabled individuals are here to give us a message.

2. Adult Special Education: services available for the disabled who are not going on to post-secondary education. My individual could use a personal education mentor and access to special equipment and resources. Fund these exceptionally disabled individuals.



2014-02-10

Support network can be made up of people or organizations:

My individual needs to be given the means of communication. Ie “Emotiv”

Funding and training (SLP or equivalent) of such a device will greatly increase the livelihood of this individual and have less choices made for him. Disabled individuals are here to give us a message. Transportation funding so PWD can get to their destination.

A place to go to do activities, educate themselves, practice daily living functions, practice communication, workshops, exercise on specialized equipment, drop in gym, , swimming, “smart fit”, singing, bike riding, bible study, Tai Chi, Chair Yoga, fishing , art classes, and socialize at a friendship center. A support network can be made up of people or organizations that you can turn to for help with favors, assistance during challenging times, or for just having fun.

Inclusive to a central database volunteers can match up with the PWD for outings and much more.


2014-02-10

Give PWD the resources: Open up new avenues…everyone is unique. Agencies and non-for-profit organizations collaborate with each other to fulfill the needs of all individuals. Create a “central media” for products, processes, services, technologies, or ideas that are readily available to markets, governments and society.

Endorse universities to have high technology projects to help disabled with communication, mobility, function, and exercise. Make technology affordable for families. Create a place for all to build character, contribute, educate, exercise, & socialize.



2014-02-10

The EATI program provided our adult son with a beautiful MacBook Pro laptop computer for his business. As a result, our son is in the process of becoming more self-determined and professional. 'Owning' the responsibility of operating the laptop and ultimately becoming more professional gave him the opportunity to explore his abilities and expand his business. He now can check his own website and emails as well as network with others and create interest and 'fans' by engaging them on social media. He is having fun, he is growing as a person and in general, he is so proud (so are we) of his accomplishments. This would not have been possible without the supportive team and equipment provided by the EATI program. In the spirit of using technology and using it in the individualized ways EATI has successfully delivered, people who have barriers are provided with the opportunity to bring their talents 'too' creating a more whole community.

2014-02-10

I just turned 19 and as most of you know the funding that disabled people get when they turn 19 disappears. Does the government think that once you turn 19 all your medical challenges vanish? It would lovely if they did but sadly they do not!

Most places that disabled adults can apply for funding either require you to have a LOW IQ or some other thing. What about those of us who don't have a low IQ and don't fit the other conditions they company has? Just because I don't fit those conditions does not mean I do not need support from companies/charities!



2014-02-12

As a health care provider my primary concerns centre around providing the necessary adaptive aids and equipment for my clients. Over the past 8 years I have watched funding for equipment deteriorate and take much longer to be approved. In the past, I have had power wheelchairs receiving ministry funding approval in as little as 3 days. The norm now, after increased justification for my clinical reasoning - which hasn't changed over the years - is more than 3 months. Smaller items such as bathing equipment would be funded in 24 hours, and now take up to 1 month. This is putting people at increased risk and reducing their opportunities for community involvement, vocational opportunities, etc. Also, unlike Alberta, we do not have a good equipment provision program for our elderly population which is also increasing their risk.

2014-02-12

Here is one for the government: NO taxes on ANY second-hand or thrift store, which is where the majority of us get our clothes, linens etc. hospital auxiliaries would win, too! Easy to implement-just remove the tax!

2014-02-12

How about a remote to signal crosswalks? I use an electric wheelchair and with the base on the post I can't reach the button, some buttons are rounded and rigid making a reacher difficult to push it right in the middle. With a remote I wouldn't need help to cross the street, I think this would benefit a wide range of people with different needs.

2014-02-12

I tend to get cold very easily, I would love to see electric wheelchair and/or scooter batteries with a plug in for a heater pad or blanket so I could get away from the wall and even participate more in outdoor activities. I can only add so many layers before my mobility is hindered by bulky garments.

(Is a portable/detachable battery possible for non-electric wheelchair or walker users?)



2014-02-13

I am 49 year old First Nation female who was born with HSN II - Hyper Sensory Neuropathy Level Two. I wasn't properly diagnosed until I was an adult. I have experienced racial prejudice, and discriminated against for being female, a handicap and Indian. I had no counseling in elementary school when I was bullied for being a "Cripple" was the kids favorite description of me. I had a handful of teachers who went out of their way to target me with verbal abuse. I lived on the Okanagan Indian Band Reserve where there was no recreation center or a safe area to hang out like the "Vernon Boys and Girls Club". Suicide is a great concern, because our Band members have been committing suicide for years. Mostly males, my youngest brother shot himself when his girlfriend broke up with him. The winter before that my brother's best friend killed himself. One summer day I heard one gunshot echo in the field. I told my husband that didn't sound right, something's wrong then I learned through the grapevine my cousin shot himself laying inside the box of a truck. He left behind a baby girl. Up the road from my house my cousin hung himself on my Dad's property across from his house. He left behind a wife with kids. There is not enough support for children, youth and adults who have to live with the loss of a family member by suicide. We need to have Life Skills workshops, Personal Development Programs, full-time therapists / counselors who want to make a positive difference in individual lives. We need empowerment, encouragement, acknowledgement and funding is the key. We have Band members who suffer from Schizophrenia, depression ect. who are at a loss since there isn't enough funding to be properly treated. Band members who have to rely on Social Assistance are living in poverty the Provincial Ministry of Social Development has to raise the Shelter and Basic Living Allowance to match the real cost of living. Increase allowable visits to receive treatment on the BC Healthcare Card. Stop ignoring People with Disabilities.

2014-02-13

Hi,

Are you on PWD now? When I first applied, I was told I was not eligible, that mine was a Federal DIAND case. Why? Because my friend, a native court worker, had filled out part of the forms for me! The assumption was that I must be native!

But, is there anything you are eligible for Federally? And why don't both governments work together to help the disabled?


2014-02-13

For the past month I have been looking into the possibilities of going back to college. I am 55 years old. I have seen 2 people at the college so far only to be given a pile of papers that need to be filled out by a doctor proving my disability and deficits I suffer from my disability. It seems every time I try to do something to better my life I have to spend weeks on useless paperwork over and over again proving your disability. What a waste of time and money. I am designated disabled federally and provincially. I know what my deficits and challenges are and I am fully capable of working with an disability worker to evaluate my abilities without having to go through this endless stream of paperwork, stress, anxiety, and doctors notes on forms in order to apply for grants and tools in place so that I can attend school. As far as I know the ministry of health and the ministry of education are run by the same provincial government but they don't share information or disability history. I am tired and frustrated and very angry that once again I have go through all this once again and all I am going to get out of it is the opportunity to upgrade my grade 12 english. What a waste of time and money!!! This is why we need disability separate from the welfare system and having a central one stop shop for disability. At least then it is only a matter of signing a consent form for the school to access information that has already been compiled in order for us to be designated disabled to begin with.



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