Tag: disability

If there is a will there IS a way. U may not be able to do it the same way that non disabled people can, but you still can do it

livebloggingmydescentintomadness:

I used to think that way too, before I got sick. I used to think that if I was just stubborn enough – and I’m really stubborn – then “where there’s a will there’s a way” and somehow I could do whatever I set my mind to.

But it’s simply a fact of reality that this isn’t true. It’s not being “negative” to acknowledge reality, to acknowledge that having a disability limits my abilities. That’s literally what it means. A Deaf person can’t hear, a blind person can’t see, a paralyzed person can’t walk, an autistic person can’t be allistic, and I can’t live the life of a healthy person. That’s not me giving up, that’s me acknowledging reality.

My illness prevents me from doing many of the things I want to do. I don’t “let” it stop me, it just stops me. If I tried to “find a way” to live like a healthy person, I would get so sick that I would collapse. Positive thoughts don’t make my pain and fatigue go away, it doesn’t allow me to think clearly or have the strength to leave the house more often. 

I know this is hard to accept, but there is nothing I can do to change this.

I do what I can to improve my health, I test my boundaries to see if I can do more than I think I can do, and I keep trying every single day. But a strong will can’t change a weak body. Wishing and wanting and trying can’t stop the bacteria that are ravaging and polluting my body, it can’t stop my immune system from attacking my organs, it can’t solve the mystery illnesses of fibromyalgia and chronic fatigue syndrome. If the disease kills me, it won’t be because I didn’t try hard enough.

Believe me, if wanting to be healthy made you healthy, I’d be the healthiest fucking person alive. If wanting to be abled made you abled, we would be abled. 

But a good attitude simply can’t fix a broken meat suit, and you healthy and abled people need to accept that too. 

You think you’re helping by telling me I can accomplish whatever I set my mind to, but you need to stop mindlessly pushing that ableist concept and realize that I don’t HAVE to be able to do whatever I set my mind to in order to be a worthwhile person. I don’t HAVE to “find a way” to be good enough. I AM good enough even though I can’t do the same things as healthy, abled people. 

I am disabled, and I am good enough.

I had to think about that a while back, when something else about seriously unequal access to dental care in the US (and how dangerous that can be) came up.

Hopefully the ABLE accounts can help for at least some of the people who are eligible, and actually have some way of getting the extra savings at all. Covering otherwise difficult medical and dental expenses (besides educational) was part of the idea behind that, to begin with.

Shame this is only an option in a minority of states, and only for people who became officially disabled before 26. Not to mention, as already said, that the vast majority of people relying on SSI are unlikely to be able to put away much/any money without the help of family and friends. At a maximum of 75% of the poverty line? :/

But, it’s particularly nasty how Medicaid does not cover dental care for disabled adults.

Besides the basic issue of finding the money at all, there’s also the $2000 individual asset limit with SSI. One root canal is liable to cost more than that. Some of us are also dealing with conditions which directly affect our teeth. It’s a mess.

That’s actually one of the reasons I ended up with a bit of a dental pileup, after I moved into a better financial situation. When I was on SSI, I got one badly needed filling done for $20 through a free clinic volunteer dental program with an extremely long waiting list. (And was glad for the opportunity, I tell you what.) That was the full extent of dental access over nearly 10 years. It would probably still be that way if I were on SSI. My mouth has needed a decent bit of catch-up work as it is, maybe not too surprisingly.

And I know I’m far from the only one to have ended up in a situation like that. It’s unconscionable that Medicaid does not have to provide any dental coverage, for people who are quite deliberately kept that poor. It’s unconscionable that anybody is kept away from dental/medical care, period. It just adds a few extra layers of nastiness, setting people up in that position because they are disabled and needing to rely on SSI/Medicaid.

People with disabilities finally get a way to save money

vaspider:

pacificnorthwestdoodles:

NEW YORK — Justin Bainbridge is 27 and works two jobs, but he wasn’t
allowed to start saving money for his future until a few months ago.

Bainbridge
has Down syndrome, and like other people with disabilities who receive
government benefits, he can’t have more than $2,000 in savings. If he
does, he would start to lose those much-needed benefits. But a new type
of savings vehicle is giving Bainbridge, and others, a chance to save
more cash.

Known as ABLE accounts, they let people with
disabilities and their families save up to $14,000 a year without losing
benefits. The accounts, which were made possible by a law signed two
years ago, are operated by individual states and are similar to 529
college savings plans. So far, 16 states offer the plans and about 10
more are expected to do so this year. Most of the states let
non-residents sign up. Each state has different rules or maintenance
fees, with some charging as much as $15 every three months.

Disability
advocates say the accounts are badly needed, since people with
disabilities were forced to spend extra money to avoid losing benefits.
With ABLE accounts, money saved can be used to buy anything that helps
the life of the person with a disability, such as rent payments, school
tuition or groceries.

“I’m saving for a new couch,” says Bainbridge, who shares a two-bedroom apartment in Omaha, Nebraska, with a friend.

Since
June, he has put away more than $1,800 in an Enable account, the ABLE
program run by Nebraska. He makes about $5,200 a year from his part-time
jobs, one folding towels at a gym and another collecting movie tickets
at a theater. But he still needs his monthly Supplemental Security
Income cash benefit to help pay his rent and live independently, says
his mother, Kim Bainbridge, who also stashes away money for him in the
ABLE account.

For
years, disability advocates have tried unsuccessfully to increase the
$2,000 savings limit, which hasn’t been changed in nearly three decades.

“It
kind of shackles you to a life of poverty,” says Christopher Rodriguez,
a senior public policy adviser at the National Disability Institute in
Washington.

The idea for ABLE accounts came about a decade ago
from parents of kids with disabilities who were frustrated that they
could not easily save money for their children. One of those parents,
Stephen Beck Jr., spent years advocating and lobbying for a law. Beck
unexpectedly passed away in 2014, just a few weeks before President
Barack Obama signed it into law. To honor Beck, the law was named The
Stephen Beck Jr. Achieving a Better Life Experience Act.

His
widow, Catherine Beck, is using an ABLE account to put away money for
their 17-year-old daughter Natalie, who has Down syndrome and wants to
go to cosmetology school to work at a nail salon. The Becks were able to
easily save money for their eldest daughter, who does not have a
disability. But for Natalie, they had to create a special-needs trust
that required hiring a pricey lawyer to set up.

“Her savings has not grown like her sister’s has,” says Catherine Beck, who lives in Burke, Virginia.

To
qualify for an ABLE account, the account owner must have had a
disability before their 26th birthday. Anyone can put money in it, such
as family or friends. If the account goes above $100,000, the person
with the disability will lose monthly government cash benefits until it
drops below that level again. Medicaid health benefits are never
affected, no matter how much money is saved. Money can be invested in
index funds and earnings are not taxed.

“For the first time a lot
of individuals will be able to work, save money and get some growth out
of it,” says Adam Beck, director of MassMutual Center For Special Needs
at The American College in Bryn Mawr, Pa.

When
the person with a disability dies, Medicaid can claim any leftover
money as payback for health care paid after the ABLE account was opened.
Since each state has different rules and fees, the ABLE National
Resource website has a tool that compares the programs.

Matthew
Shapiro, who lives in Richmond, Va., and works to promote the state’s
ABLE program called ABLEnow, says finally being able to have some
savings helped reduce his money worries. The 26-year-old, who has
cerebral palsy, uses a power wheelchair to get around and unexpected
repairs can be costly. He travels sometimes for his business, 6 Wheels
Consulting, which helps educate companies and organizations on
disability issues.

“Being a person with a disability is expensive,” says Shapiro. “These accounts are so much needed.”

1) ABLE accounts are amazing for the people that they help but

2) If you become disabled later in life (which happens to a lot of us) you can’t access this, and are stuck in the same penury loop that you are now.

I became disabled in my 30s. I can no longer work an office job, because I’d have to somehow magically become able to work 40 hours a week for a year to be covered by FMLA again, which will never happen. If I ever need to go on disability, it will basically completely screw us over as a family. Basically the only reason why I’m not going for disability right now is because of how much it would mess up our ability to try to get out of debt and save what scraps of money we can. 

So – yes. These are great. But there is a huge swath of the disabled community who could be helped by these and aren’t being helped. I’m not sure WHY people who become disabled as adults after 26 can’t access these accounts… but it would really help a lot of us escape the disability penury trap, in which you cannot save any money, so budgeting your income doesn’t help, because if you have too much cash, they take away your income… 

People with disabilities finally get a way to save money

spoonie-life-hacks-owner:

crpl-pnk:

crpl-pnk:

a culture fixated on sniffing out “fakers” to protect “real disabled people” inevitably harms every single disabled person within that culture & only maybe a relative handful of “fakers”, who are usually mentally ill or economically disadvantaged to the point of having no alternative. stop saying your skepticism is for my benefit. stop saying my oppression is for my benefit. yes the idea of people with no grasp of my struggle claiming it is infuriating & insulting beyond belief. yes that is also oppressive. but in practice, i’d rather a dozen able bodied people successfully pass themselves off as disabled than one disabled person die in poverty because they couldn’t “prove it” to an abled person’s content

setting aside the fact that People Die From This, just the impact of faker witchunting on the emotional wellbeing of disabled people is enough to make it inexcusable
i’ve heard someone crying, literally sobbing & vomiting from pain frantically promise me that they’re not exaggerating when i never indicated for a moment that i disbelieved them, because they’re so used to the accusation. i’ve heard someone in the aftermath of a seizure quietly mumble as they regained lucidity, “are you sure i’m not faking?”
i don’t know a single chronically ill person who hasn’t at one point or another seriously questioned if they were ever really that sick at all because we’ve been so brainwashed to challenge the validity of disability that we begin to doubt the reality of our own definitive lived experiences

I became ‘disabled’ very suddenly 2 weeks after my 18th birthday. The first few months were the worst because my pain tolerance wasn’t accustomed to my new body. For a few months I wouldn’t even call myself anything close to disabled despite the fact that I was completely dependant on others to survive.

Eventually I applied for PIP. It’s an English benefit, but it also makes you ‘officially’ disabled. So not only could I buy some disability aids that would help me do basic things on my own, but it also meant that I could use things that are designated for the disabled.

I had no idea that I would have to spend an entire year being accused of faking and lying. I had to read every accusation they threw at me and somehow prove each one wrong. Even when I did they threw more.

It’s not just about frauds. It saves money. The assessors can only approve a limited number of disabled people per month or they don’t get a bonus.

I was lied about. They were supposed to ask me questions and write my answers. Most of my answers weren’t there. The ones that were, were reworded to look bad.

I said: My health has made me depressed. Its because I suddenly have no control over my own life. I can’t even go to the toilet without help now. I have had breakdowns where I can’t stop crying no matter what. I’ve even tried to take my own life.

What my assessor wrote: I shout and scream when I don’t get my way.

This is how they handled every single point that I had to prove.

That year, my depression got worse. I wanted to give up but I refused to let them win and I needed this to survive. It was the worst and hardest period of my entire life and I nearly didn’t survive it.

There are millions who go through that struggle but either don’t have the strength for it, or simply are rejected.

I was lucky. My Mum’s work has a program that allowed me to use £500 to see a private specialist. I told her my situation and so she examined me and noted every issue she could diagnose (my condition works that way). She then wrote a report of my general health and emailed me a copy. This gave me just enough proof right at the end of the process for me to finally get the support I need. Most don’t have that money available.

Im in online communities for certain conditions. At least once a month, someone commits suicide because of the accusations. Everyone who doesn’t have a visible condition feels a need to prove their self.

But it’s all worth it to stop the people who falsely claim right?

Maori words minted for autism and mental health issues – BBC News

cydril:

The word they chose for autism is ‘takiwatanga’, meaning ‘his or her own time and space’. How cool is that?

Keri Opai, the civil servant who helped devise the words, said they had been chosen not only to fill gaps in the Maori vocabulary, but also to ensure that the terms are non-judgemental.

“In my experience, people with autism tend to have their own timing, spacing, pacing and life-rhythm, so I interpreted autism as ‘takiwatanga’, meaning ‘his or her own time and space’,” he told government-funded Maori Television.

Mr Opai consulted the Maori disabled community in order to develop variants that differ from what he called the “sometimes condescending English terms”, and instead emphasise “gaining strength and ability.

Maori words minted for autism and mental health issues – BBC News