writerg
Junior Member
Posts: 67
Gender: Male
Dev Status: Disabled
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Post by writerg on Mar 7, 2023 21:19:18 GMT -5
What disability causes are important enough to you that you would protest/advocate to get progress? Here are my causes in order by priority. I live in the U.S.
1. Insurance coverage of preventative health care (i.e. personal training, yoga, PT, ect) not just reactive coverage once you are already messed up (i.E. placement in a nursing home)
2. Medicaid coverage of freelance attendant care services rather than an agency (i.e. care.com) not stopping benefits for those that can/want to work regardless of income or occupation
3. Legalization of all forms of sex work
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Post by ayla on Mar 7, 2023 22:50:40 GMT -5
Universal health care, the insurance based system we have is totally insane
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Post by zacc on Mar 7, 2023 23:04:39 GMT -5
What disability causes are important enough to you that you would protest/advocate to get progress? Here are my causes in order by priority. I live in the U.S.
1. Insurance coverage of preventative health care (i.e. personal training, yoga, PT, ect) not just reactive coverage once you are already messed up (i.E. placement in a nursing home) 2. Medicaid coverage of freelance attendant care services rather than an agency (i.e. care.com) not stopping benefits for those that can/want to work regardless of income or occupation 3. Legalization of all forms of sex work
Can you clarify what you meant by number 2? The sentence is pretty confusing. And I totally agree with point 3... In my opinion we should legalize all sex work and all drugs. Here are some of mine, all three of yours are already part of my important disability causes: - Raising the social security amount for folks with longterm disabilities that make it very hard for them to work.
- Doing more to make the world more physically accessible for wheelchair users like me.
- I want them to make travel more accessible, make airplanes fit for electric and manual real chairs so one can ride the plane without getting out of their chair.
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Post by atlwheelin on Mar 8, 2023 3:32:43 GMT -5
What disability causes are important enough to you that you would protest/advocate to get progress? Here are my causes in order by priority. I live in the U.S.
1. Insurance coverage of preventative health care (i.e. personal training, yoga, PT, ect) not just reactive coverage once you are already messed up (i.E. placement in a nursing home) 2. Medicaid coverage of freelance attendant care services rather than an agency (i.e. care.com) not stopping benefits for those that can/want to work regardless of income or occupation 3. Legalization of all forms of sex work
Can you clarify what you meant by number 2? The sentence is pretty confusing. By number 2, I think he means that anyone in your inner circle should be able to be paid by the state without an independent care waiver form or to be certified in CNA care. While I agree that would be nice for PWDs in need to know they have care in people they trust, that ideology opens up a whole can of worms on how the system could be taken advantage of and funds go completely dry.
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Post by atlwheelin on Mar 8, 2023 4:23:23 GMT -5
Here are some of mine, all three of yours are already part of my important disability causes: - Raising the social security amount for folks with longterm disabilities that make it very hard for them to work.
- Doing more to make the world more physically accessible for wheelchair users like me.
- I want them to make travel more accessible, make airplanes fit for electric and manual real chairs so one can ride the plane without getting out of their chair.
I couldn't agree with you more on SSI. I also think it's a shame that lifelong disability isn't eligible for SSDI without a certain amount of quarterly working hours paid into the system (unless I'm missing a loophole somewhere). While I would still likely be in poverty on an SSDI income, it would make my budget a lot more feasible if I had that extra income monthly. The fact this government expects someone to pay their bills on $914 a month is beyond laughable, when most of the cheapest rent anywhere is $1200-$1500 before any other bills or life expenses are taken into account.
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Post by Quad787 on Mar 8, 2023 11:36:57 GMT -5
What disability causes are important enough to you that you would protest/advocate to get progress? Here are my causes in order by priority. I live in the U.S.
1. Insurance coverage of preventative health care (i.e. personal training, yoga, PT, ect) not just reactive coverage once you are already messed up (i.E. placement in a nursing home) 2. Medicaid coverage of freelance attendant care services rather than an agency (i.e. care.com) not stopping benefits for those that can/want to work regardless of income or occupation 3. Legalization of all forms of sex work
I would love for there to be some way for my regular, employer provided Healthcare plan to cover my attendant care services. Right now, I spend about 40K a year right out of my pocket. It's ridiculous. Why bother getting off public assistance to work when so much of your pay goes right out the door to pay attendants?
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Post by atlwheelin on Mar 8, 2023 13:41:01 GMT -5
What disability causes are important enough to you that you would protest/advocate to get progress? Here are my causes in order by priority. I live in the U.S.
1. Insurance coverage of preventative health care (i.e. personal training, yoga, PT, ect) not just reactive coverage once you are already messed up (i.E. placement in a nursing home) 2. Medicaid coverage of freelance attendant care services rather than an agency (i.e. care.com) not stopping benefits for those that can/want to work regardless of income or occupation 3. Legalization of all forms of sex work
I would love for there to be some way for my regular, employer provided Healthcare plan to cover my attendant care services. Right now, I spend about 40K a year right out of my pocket. It's ridiculous. Why bother getting off public assistance to work when so much of your pay goes right out the door to pay attendants? Medicaid pays for my healthcare. Now I only get 4 hours a day, but I don't pay for it out of my pocket at all.
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imupforanything
Full Member
Posts: 138
Gender: Male
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Post by imupforanything on Mar 8, 2023 14:00:03 GMT -5
I would love for there to be some way for my regular, employer provided Healthcare plan to cover my attendant care services. Right now, I spend about 40K a year right out of my pocket. It's ridiculous. Why bother getting off public assistance to work when so much of your pay goes right out the door to pay attendants? I went through this too, my company also offers Long Term Care via Genworth. That covers my attendant care, you should look into them.
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Post by darthoso on Mar 8, 2023 14:13:14 GMT -5
- Eliminate the waiting lists for Home and Community Based Services in preparation for a federalization of Medicaid and HCBS (Medicaid being ran by the states, unlike Medicare which is ran exclusively by the feds, is 100% 1960s racism). This would enable PWDs to move between states without losing services.
- Increase wages for PCAs.
- Make SSI 1619B retroactive, remove asset limit. This alone solves several issues including marriage equality and working.
- Truth and Reconciliation Commission on the modern day institutionalization of people with disability for profit (I encountered those bastards recently when they fought us on a potential change to state policy, got very ugly).
- General purge of all the bullshit policy we have to deal with on a daily basis.
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Post by loveonaroll2 on Mar 8, 2023 14:26:27 GMT -5
I live in the US and in Florida, and so my priorities would be 1 ensuring PCAs get benefits retirement, payed time off etc. PCAs feel under-appreciated for the work that they do. And I think they deserve more. At least the quality ones like mine. Should be eligible for it. There needs to be more incentives for people to work in this field. One quick comment on what someone else said about Medicaid should cover Pca care that’s not tied to an agency you should look into consumer directed care program for your state Medicaid does cover care, not through an agency as long as you’re willing to have a representative or do it yourself you have the ability to hire whoever you want you just have to do some paperwork have them fill some stuff out ect also, I would look into this, but there are programs do pay for your PCA care if you are working, VR can under certain circumstances if you’re in the US and then you may be able to get qualified for the assistance through your local center for independent living. If you are in the United States I know they do. I have some in the UK as well and I’m sure other countries, possibly has one. 2 I want more to be done with physical accessibility for wheelchair users and physical disability in general it is ridiculous that there is not more accessible apartments or houses that are accessible without renovations we 30+ years into the Americans with disabilities act, and we have to do better I was reading the UK is doing more with accessibility then the United States is, it’s crazy but of course I love my country. 3 raising the amount for long-term disability SSi not punishing people for working rather incentivizing people to work, but helping them out it’s not easy to have a disability and the more money the government can give us the better however, I do think to make sure the people that are actually able to work, can’t cheat the system. You should have to meet certain eligibility requirements in order to get more money but this will be simple like looking at your employment history how your disability impacts your ability to work. I just don’t want people to cheat the system like they do with handicap parking. 4 legalization of sex work in all forms 5 this may be controversial but it was close to passing in Congress legalization of marijuana marijuana helps my mom muscles. Relax. And helps me to get better sleep. I have medical marijuana right now in the form of edibles
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Post by darthoso on Mar 8, 2023 14:33:40 GMT -5
What disability causes are important enough to you that you would protest/advocate to get progress? Here are my causes in order by priority. I live in the U.S.
1. Insurance coverage of preventative health care (i.e. personal training, yoga, PT, ect) not just reactive coverage once you are already messed up (i.E. placement in a nursing home) 2. Medicaid coverage of freelance attendant care services rather than an agency (i.e. care.com) not stopping benefits for those that can/want to work regardless of income or occupation 3. Legalization of all forms of sex work
I would love for there to be some way for my regular, employer provided Healthcare plan to cover my attendant care services. Right now, I spend about 40K a year right out of my pocket. It's ridiculous. Why bother getting off public assistance to work when so much of your pay goes right out the door to pay attendants? No Medicaid buy in in your state?
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Post by koala on Mar 8, 2023 14:48:50 GMT -5
A complete revamp of the caregiver system is definitely at the top of my list. It is ridiculously broken and doesn't serve anyone who needs it well. I've never talked to anyone who had a good experience with finding/providing/affording care. I don't know what it should look like or how to go about fixing it, but as an advocate, it is a hill I would die on.
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writerg
Junior Member
Posts: 67
Gender: Male
Dev Status: Disabled
Relationship Status: Single
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Post by writerg on Mar 8, 2023 16:10:29 GMT -5
What disability causes are important enough to you that you would protest/advocate to get progress? Here are my causes in order by priority. I live in the U.S.
1. Insurance coverage of preventative health care (i.e. personal training, yoga, PT, ect) not just reactive coverage once you are already messed up (i.E. placement in a nursing home) 2. Medicaid coverage of freelance attendant care services rather than an agency (i.e. care.com) not stopping benefits for those that can/want to work regardless of income or occupation 3. Legalization of all forms of sex work
I would love for there to be some way for my regular, employer provided Healthcare plan to cover my attendant care services. Right now, I spend about 40K a year right out of my pocket. It's ridiculous. Why bother getting off public assistance to work when so much of your pay goes right out the door to pay attendants? I am in that situation right now. To keep a positive head about it I think of it as paying to look presentable and I am contributing to the economy by employing someone, but yes it is messed up that the harder you work the less you make and there seems to be no hope for generational wealth.
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writerg
Junior Member
Posts: 67
Gender: Male
Dev Status: Disabled
Relationship Status: Single
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Post by writerg on Mar 8, 2023 16:12:24 GMT -5
I would love for there to be some way for my regular, employer provided Healthcare plan to cover my attendant care services. Right now, I spend about 40K a year right out of my pocket. It's ridiculous. Why bother getting off public assistance to work when so much of your pay goes right out the door to pay attendants? No Medicaid buy in in your state? There is, but nobody seems to know how to assist, been working on it since May.
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Post by atlwheelin on Mar 8, 2023 16:37:16 GMT -5
No Medicaid buy in in your state? There is, but nobody seems to know how to assist, been working on it since May. Have you contacted your local Vocational Rehabilitation Services? That's who I used to get in the program 20 years ago and it's just carried over into the latter years.
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