KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
In this time of 'austerity', disabled people are among the most harmed groups. In fact, some of the biggest proposed cuts are aimed at Medicaid, Medicare and other programs specifically designed to help disabled and poor communities. And it's not just happening nationally, but statewide as well.
The New York Times wrote about problems in California (but it's far from the only place where there are significant issues):
More than 150 people, many of them too frail to stand, had gathered to protest the elimination of the centers, which serve about 35,000 elderly and disabled Californians, including 1,500 annually in San Francisco. The rally drew at least four mayoral candidates, including Mayor Ed Lee, who this week proposed to the Board of Supervisors that the city put $3.4 million toward keeping the centers open.
Because of state budget cuts, California’s 274 adult day health care centers, including 10 in San Francisco and 23 more in Bay Area counties, are scheduled to lose their Medi-Cal financing and related federal matching funds at the end of November. One San Francisco center closed earlier this year and another one plans to shut in November.
[...]
Deundra Hundon of Bayview stood at the top of the City Hall steps during the rally and addressed the crowd. Ms. Hundon’s mother, Sadie Fenley, 77, who has Alzheimer’s, stayed by her side as she spoke.
“If we didn’t have adult day health, can you imagine what her day would be like?” Ms. Hundon said. “Please don’t close adult day health care unless you want people like my mom to be home alone without friends or in a nursing home.”
Fifty groups, including the AARP, are standing in opposition to the repeal of the CLASS long term care act. The act is designed to provide long-term care services that aren't covered under Medicare, and without it, many sick and elderly people will be left without any options.
And it doesn't stop there: low-income housing is in danger of massive spending cuts. Not only could this leave people with no home and no options, it could sacrifice potentially thousands of jobs:
The federal government’s failure beginning in 1990s to meet its commitment to public housing makes further cuts devastating. Public housing, with more than $25 billion in a backlog of repairs, is on the verge of collapse. Unless Congress puts significant money into the capital fund, tens of thousands of units around the country will continue to crumble and could be lost forever.
The administration has asked for a modest $3.8 billion for the Community Development Block Grant program, which was set up to improve housing, infrastructure and economic opportunities to poor and moderate-income people in all communities. If Congress falls short of that request, it could kill off building and renovation projects, sacrificing as many as 6,000 jobs.
Funding for HIV/AIDS prevention and care is being drastically cut statewide, and nationally, will likely be on the chopping block, even after activists have raised the issue over and over again. HIV/AIDS hits the poorest of the 99% the hardest - those who are already dealing with homelessness, poverty, malnutrition.
This struggle is personal for me. I'm a paraplegic and I live in a low-income apartment. Most of my options are running out, and it's hard not to completely lose hope. The owners of my housing unit already seem intent on trying to kick me (and probably others) out for arbitrary reasons. I'm up for recertification this month and I sense that my rent is about to increase. Because of groceries and bills, I'm already down to $150 for the rest of the month. (I'm on SSI and it's not a lot of money. And since there has been no COLA for two years, stretching the money I am allowed to have has been tough.)
I'm about to have to apply for food stamps again next month. I've had them in the past, but they got cut under the Bush administration and $30 just isn't enough to get what I need - especially because I'm prone to develop pressure sores and I need high protein foods.
If all this is so tough for me - someone who's lucky enough to have both a really good private insurance and Medicaid, I can only imagine what it's like for those who have no insurance and no SSI and no food stamps. And those with no long-term care insurance. And those who lack adequate housing in their areas. And those who are poor and suffer from HIV/AIDS.
And with all of that, I'm still putting aside the high costs of hospital visits, medical equipment and mobility-related equipment (as in, a lift for my vehicle, hand controls, hospital bed, and the like.) Where I live, there is one place that sells mobility equipment. That place is the only one where someone can buy a lift and hand controls for their vehicle. The hand controls themselves were about $5,000, which is how much was paid for my truck. And these things are all out-of-pocket, or if someone is lucky enough, they can ask charities to help with the cost - if the charities themselves aren't facing drastic cuts and lack of donations.
And if politicians get their way, Medicaid/Medicare will be cut so drastically that many providers will be eliminated. I'm in a rural area and it's a constant worry for me. Even with my (relatively) excellent insurance, I still have to drive 30 minutes just to see most of my doctors - and I have quite a few of them, with all my heath issues. I am losing my private insurance soon and if these drastic cuts continue and more providers abandon Medicaid/Medicare, I'll be screwed, along with who knows how many others.
What seems really sick is there is no lack of activism and lobbying on behalf of disability organizations and HIV/AIDS or other health-related organizations. People have been in this fight for several decades saying these same things over and over. But every time, these programs are first on the chopping block. Every state does this. The US Congress does this. Even the courts - if the Supreme Court guts the Affordable Care Act, or if they decide that states can cut Medicaid rates, it will further harm poor and disabled communities.
And of course banks are happy to evict disabled and poor homeowners as much as able-bodied ones; they're happy to charge disabled people a debit card fee as well. Until a few days ago, they were in fact charging me a fee to use my debit card. Just to explain how much of a big deal this was for me, and probably is for a lot of disabled people: first of all, as I said before, I'm getting SSI and it's not that much money. And as I said, I'm already almost out of the money, after groceries. To a lot of people, $4 does not seem like very much. To me, it's a whole box of Easy Mac, or several of those 79 cent frozen dinners, or whatever else I can find to eat. It's enough for food that could last me a week or two (albeit not always very nutritious food.) Secondly, when I called my bank, they essentially said that if I don't want to be charged a fee, every time I use my debit card I need to go to an ATM, get cash out, then go to the store and pay with the cash. And if I want the leftover money back in the bank so that I don't go in the red, I have to go back to the bank to re-deposit that money. I'm in a wheelchair. One trip of loading up my wheelchair, driving, unloading, and repeating all of that to get back home - that's difficult enough. But to suggest that disabled people have to do that several times and waste the gas money when gas is so expensive - that's totally insane. I'm relieved that my bank canceled the fee a few days ago, but it's nonsensical that they are allowed to do this to disabled people - along with the more egregious things they are doing to us.
One wonders where it ends. Our whole system - the financial side and the governmental side - is working to keep us down, and largely succeeding, at least when it comes to those of us who face almost insurmountable obstacles on a daily basis even without all of these things. We are not being listened to, and we're definitely not being catered to.
At least 13% of the Occupy Wall Street protesters includes disabled people. This is happening even given the fact that the protests are occurring in parks and other outside locations and they involve camping and other activities that are likely to prove difficult for wheelchair-bound people or those with canes or crutches. People are still managing to come out to join the fight, even if they can't stay all day or overnight, in the cold and in a tent. In fact, the only reason I haven't gotten out to Occupy Mobile (the closest one to where I live, even though I'm across the bay and it's a pretty long drive) is that I just got out of the hospital a week or so ago, and I'm waiting to see the doctor to get IVs and tubes out of me before I can go anywhere.
Something has to change. We already have enough struggles without these cuts and fees and price increases. To live in this country which is so incredibly rich and have to worry if we will have a doctor and a home from one day to the next is so cruel that no words can really explain the way it feels. That the 1% are so amoral as to allow this to happen should send chills up anyone's spine.