News, Views, and Information about Disability

Disability News, Views, Information, and Literature

Monday, December 3, 2012

National Study Shows Disabled Parents Face Discrimination, Loss of Custody

Numerous media have run an Associated Press article about a report by the National Council on Disability which shows how common, devastating, and far-reaching discrimination is against disabled parents. The report is entitled, "Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children." It estimates that 6.1 million U.S. children have disabled parents -- parents at much greater risk than nondisabled parents of losing custody of their children, including removal rates as high as 80 percent for parents with psychiatric or intellectual disabilities.

The Wall Street Journal describes the report thus:
Such cases are found nationwide, according to a new report by the National Council on Disability, an independent federal agency. The 445-page document is viewed by the disability-rights community as by far the most comprehensive ever on the topic — simultaneously an encyclopedic accounting of the status quo and an emotional plea for change.
The AP story details the stories of several parents who have had to fight tooth and nail to keep their children, simply due to having a disability, which ranges from blindness, quadriplegia, or cerebral palsy. In some cases, infants were taken from parents at birth, in other cases ex-partners sued for custody, and in some cases, adoptive parents went through rigorous efforts to prove suitability. One adoptive mother, Carrie Ann Lucas, went to law school so she could help herself and other disabled parents successfully fight discrimination.

Read the AP article here.
Read the NCD press release here.
Read the complete publication ("Rocking the Cradle") here.

Disability in the News in Maine and Across the US: November 2012 Roundup

The Waterville, Maine Online Sentinel reported that the Maine Human Rights Commission is establishing a mediation program to try to solve discrimination problems more efficiently.
According to the commission's fiscal 2012 annual report, 639 charges were filed, 82 percent of those involving complaints of discrimination in employment; 11.5 percent involving housing complaints; and almost 6 percent were complaints about public accommodation. The report says disability discrimination was alleged in a third of the complaints and whistleblower discrimination was alleged in a fifth of them.
Click here to read the complete story.

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Nine new veterans of the Iraq and Afghan wars enter Congress with the recent elections. The highest profile of these veterans is Tammy Duckworth, a disabled vet who will represent Illinois' 8th Congressional district as a Democrat. Duckworth was a major in the Army in Iraq. She is a double-amputee as the result of a grenade injury while piloting a Blackhawk helicopter. Read more about Duckworth and the issue of veterans in the Senate and House.

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Uncle Sam Wants You to Email Your Doctor

NPR reports that patients with online access to their doctors might be more engaged in making health care decisions. The article states, "A federal law passed in 2009 says that physicians have to start offering their patients online communication, or Medicare will start docking how much it pays them in the future." While initial studies showed that patients with online access made fewer doctor appointments, a larger, more recent study reveals that patients came in more often. However, "the government's intent in requiring doctors to offer online access ... isn't to drive the overall number of office visits up or down, but to improve the relationship between doctors and patients by improving communication." Read or listen to the complete story here.

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Teachers and administrators in Maine are fearful and confused by a new law opposing restraint of disabled students, according to a Portland Press Herald story with the headline, "Maine teachers say new restraint rule leads to assaults by students." The article goes into detail about the issues teachers are having with disruptive students and the fearfulness of the teachers in relation to the new rule. There is very little in the article about the reason the law was implemented -- to protect disabled students from excessive force, restraint, or other abuse.

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The American Psychiatric Association is voting on the revisions to the DSM-5 (Diagnostic and Statistical Manual - Fifth Edition) this weekend. Some possible changes that have people concerned include eliminating Asperger's syndrome and instead categorizing people who previously fit that diagnosis as "mildly autistic." Other changes include adding a form of depression associated with grieving a death or other loss, and -- in an attempt to reduce the overmedicating of children who are diagnosed with bipolar disorder -- adding "disruptive mood dysregulation disorder" among children. Click here to read or listen to the story on All Things Considered.

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The United States Senate is set to vote on Tuesday whether to ratify the U.N.'s Convention on the Rights of Persons with Disabilities. According to the Huffington Post, strong opposition to ratification comes from the extreme right wing, including Republican Senators Rick Santorum and Mike Lee, the latter of whom said he would "do everything I can to block" ratification. On December 2, the Washington Post Editorial Board came out with strong support of ratification, appealing to Republicans to remember that the Americans with Disabilities Act was enacted under George H. W. Bush and that the George W. Bush administration signed off on the UN Convention in 2006. The Post's editorial closes thus:
Today’s Republican senators could do a lot worse than to heed Mr. Dole’s advice. His political career is eloquent testament that heartland conservatism is consistent with enlightened global engagement and a compassionate commitment to civil rights for all — including citizens with disabilities.

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Maine Rife with Baby Boomers!
A Bangor Daily News article opens: "In terms of demographics, Maine is the oldest state in the nation, populated by what the state Office of Aging and Disability Services calls one of the largest concentrations of baby boomers." In response, efforts to grow the 18-44 year old population and to spur economic development are in the works. Read details of these efforts here.

Monday, November 19, 2012

Disabled Mainer Speaks about Working at Walmart, Upcoming Strikes

Low wages, lack of health insurance, concern for elderly and injured coworkers paramount

By Sharon Wachsler

Static Nonsense* is a disabled blogger I’ve known for a year or two. We follow each other’s blogs and tweets. SN periodically tweets about problems at work, including disability-related issues, but it was not until I saw recent tweets like this one that I knew who SN’s employer was:
#letusorganize #ourwalmart RT @AfterGadget: RT@OccupyWallSt: Support the WalMart Black Friday Strike
With Walmart the biggest employer in the US (a staggering one percent of the US population works for Walmart) and with Black Friday the biggest shopping day of the year, the upcoming Black Friday strike by Walmart employees around the country is a very big deal. [Update: Walmart has retaliated against strikers and is opening the store even earlier than usual – 8 PM Thanksgiving day.]

The issues at the heart of the strike – a living wage, safe working conditions, fair and respectful treatment, lack of affordable healthcare, consistent scheduling – are relevant to all. However, as I learned during this interview, disabled and elderly workers are particularly vulnerable to ill-treatment by the retail giant.

A group of many people standing outside wearing bright yellow or lime green t-shirts, many holding signs. One of the prominent signs has a yellow frowny face in the middle and says Walmart, Always Low Wages
While the media focus on strikes and protests has not included Maine, there are 22 Walmarts in Maine, employing approximately 7500 Maine citizens. According to data collected by the Maine Department of Health and Human Services in 2005, Walmart has more employees on public assistance than any other Maine employer – even though it’s the state’s second-largest employer (the first is Hannaford). The study found that more than ten percent of the state’s Walmart employees rely on state assistance such as Medicaid, Food Stamps, and Temporary Assistance for Needy Families, making the workers’ issues directly relevant to the Pine Tree State.

Thus, I was very excited to have a long chat online last night with SN about what it’s like to be a disabled employee of Walmart in Maine, and what SN hopes the strikes might accomplish.

Question: You’ve indicated that it’s important to you to maintain anonymity in part because of personal matters. Do you also have concerns about being identified as speaking about what it's like to work at Walmart?

There is that, too. Unlike a lot of other states, Maine has a fairly small population and it's not the most diverse of places. As such, situations as specific as mine – my specific set of disabilities – are a lot easier to identify. With such a low population, when you're a part of a minority of any sort it becomes really obvious. I don't fear specific retaliation such as being fired or anything, but I err on the side of caution anyway because given the company, it does still technically pose a risk.

My current job is on a shaky foundation, so I have to be careful not to rock that too much.

No Response to [FMLA] Medical Leave Request

Q: Why does it feel shaky?

I'm sort of hanging between professional warnings. Because of how much my conditions vary, there are days that I miss from work. I don't remember the specific number of sick days that we're allowed; I think it's either three or six through a rolling period of six months. [During] winter or if one of my ribs gets shifted out of place, I can use up a lot more than that.

I applied for an intermittent medical leave [under the federal Family and Medical Leave Act (FMLA)] over a year ago specifically to cover that issue. But I never heard word back from either our store's human resources department or from the head office. According to my boss, he doesn't see anything of the sort on my file.

I had a coaching about my attendance on my last yearly evaluation, because I would call in [sick] on days where I felt I wasn't in a good enough shape to do a decent job at work, or it was unsafe for me to do so. I was under the impression that my FMLA would have covered it; I only just found out that so far, it hasn't, because we don't even know if it's gone through or not.

SW: “Coaching” is a Walmart euphemism for? . . .

A formal warning.

Q: You referred to having conditions that vary. . . .

My current diagnoses are fibromyalgia, body-wide juvenile onset polyarthritis, scoliosis, and schizotypal personality disorder. There are others that I deal with as well, but they're not officially on record as a diagnosed condition, such as my joint hypermobility and my chemical sensitivities. The hypermobility is what causes my ribs to shift in and out of place periodically, which can leave me in quite a bit of pain for several days, especially since my job is manual labor.

The arthritis and fibromyalgia can flare with various environmental factors like the weather and rainy or snowy seasons. So yeah, they fluctuate a lot. Some things can be predicted, like if I pay attention to the weather, but other contributing factors, such as stress, can't really be predicted as easily. Unless it's the Christmas season and you work retail. That you can pretty much guarantee is stressful!

Q: You applied for intermittent leave under the FMLA to allow more sick days during a flare? And your employer never responded. Is that right?

Yes. This happened around the same time that I submitted my accommodation requests to the head office [for reasonable accommodations under the Americans with Disabilities Act]. I heard back about the accommodations, but never about the intermittent leave.

The specific accommodations I requested, during March 2011, was a lifting restriction of 10 pounds – to avoid making my ribs shift and causing injury, being exempt from register duty in order to avoid joint injuries, and not being scheduled for shifts longer than six hours.

Missing Stools, Removing Benches; the Stress of Phone Calls

Q: Were the accommodations granted?

I was transferred to a different job position, and I now have access to a stool during shifts where I can sit down and rest for up to 20 minutes per hour. The job requirements of the position I'm in now states I'm only expected to lift up to 10 pounds on a regular basis, and since I now work in what's called a service area, I can no longer be requested to run register when the store is busy.

Service area means I work in a location where I am expected to be present at all times in order to assist customers that need the service of that area. So places like the jewelry counter, the deli and bakery, and Tire Lube Express. I work in the fitting room and answer the phone for the entire store.

Q: I’m interested that you are allowed a stool because I read a post about problems disabled Walmart employees face. It says, “All chairs and stools have been removed from all Wal-Mart sales floors to keep employees from sitting while in view of customers,” including in cases where injured or elderly employees have said they need to sit sometimes to be able to work their whole shift.

That standing on the sales floor policy is real. People can get in big trouble for sitting down if they don't have ADA accommodations. It's also why I’m only “allowed” [to sit] 20 minutes per hour.

Q: I’d guess that a lot of people don’t know that they can request a reasonable accommodation, such as a stool. Has that been your experience?

Yep, took me this long even though I’ve been a cane user since 2007. We do have some [associates] that use [accommodations] but not many. Though I have noticed that we don't have enough stools to go around. Sometimes mine goes MIA. My store is pretty lenient on the [sitting issue], though that may change. Our new store manager wants to take the fitting room's bench away because our elderly associates sit down on it. And three of us have stools! His line of thinking is so ridiculous.

Q: In other ways, does this new position you were transferred to work for you?

It's easier on me physically at times, since I don't have to lift boxes or heavier merchandise like strollers. Dealing with smaller items like bras and their straps can be hard for my hands though. And because I also sort items that have been returned, I'm also frequently exposed to clothing washed with fragranced laundry products.

The stress of the phone calls can be really terrible, though. Since I transferred to this position, there have been days where I didn't go to work because I knew I couldn't mentally handle it. We get some rather nasty calls, especially in high traffic seasons like Christmas. People get upset because they all want to reach the same department, on multiple lines, and [the people in each department] can only answer one [call] at a time.

I'm frequently the buffer zone for callers’ mistreatment since I'm the first person they speak to – or the only person, if the call isn't being answered by a particular department and it loops back to me. And then there are instances where even management doesn't want to answer a phone call – even when it's part of their job – and I'm left trying to defuse the situation, with little training to do so.

Retail is rough. A lot of customers treat us like cattle. Much like management frequently does. It's usually one or the other.

Older and Injured Workers Required to Unload Trucks

Q: How do you feel treated like cattle?

There are times where associates get pulled to do different jobs that they're not even trained for. For example, when trucks of merchandise come in. On several occasions, management has pulled associates from my department to help unload the merchandise from the trucks. I'm exempt from it since I'm in a service area, but I've done it before when I was a cashier, and I've worked in warehouses before. It is not an easy thing to do, and it can be very intense on the body. Several of our associates are elderly, in their 50s or even 60s and higher. I remember one instance where a 60-something woman injured her shoulder pulling a truck. She developed bursitis from it. When a manager asked her to do it again, she pointed out that she couldn’t; she was dealing with a shoulder injury. They claimed that since it wasn't officially on record as a limitation, it didn't matter.

Warehouse workers have specific safety regulations, such as encouraging the use of back braces and proper lifting, much of which we do not have to do in our current positions, so we don't have access to those braces and the like. I have a back brace, but it's a personal, so I'm an exception.

Q: Would you like your fellow associates' health and safety needs to be taken into consideration by your employer?

Oh gods yes. We have another associate with a knee injury. I heard at one point that they made her pull a truck too, even though she's on accommodations like I am. I think the only reason why they haven't been able to make me do it is because I'm in a service area. That is my one protection

Another example [of workplace safety problems] is when [I was working as] a cashier. After I got my ribs adjusted I had numbness and poor movement in the entire right half of my body and could barely use my arm or hand. They made me run register anyway, with one arm, because I didn't have a note.

It frequently feels like our health is supposed to be our responsibility alone, and that their concerns about it are simply lip service. Our training includes how precious [our health] supposed to be – about proper handling of chemicals or spills that include things like bodily fluids – but anything past that training doesn't seem to matter.

Desire for Communication and Follow-Through

Q: If there was support for you and your fellow associates, what would it look like? How would you like things to be?

Encouragement for intercommunication would be nice. We have an open door policy, but that only goes so far. I remember one time I tried to report an incident of associates making abuse jokes in the break room, and I asked for sensitivity training. I got in the door fine, but nothing happened after that point.

Managers should be more willing to work with individuals or groups to address their concerns and needs. It doesn't help that some of our managers appear to have a high turnover rate, like my department. Since I started there, we have had three different assistant managers, two zone managers and at least two department managers. People aren't really there long enough to establish a trusting relationship, which is what you really need when you're dealing with a management system. And some that have been there for a while feel like they've become callous over the years, or just aloof.

I don't know if the turnover rate is the same in other departments or not. I suspect that ours is because our department covers so many different sections under one heading – Mens, Boys, Girls, Infants, Ladies, Ladies Accessories, Shoes, and Jewelry. The others are much smaller. Ours appears to be very stressful and chaotic to maintain, and there's a lot of drama between associates.

Q: So your experience is that the door is open, but then after you've gone through the door, what? Alice disappears down the rabbit hole?

Exactly. It varies so much between managers, though. My current boss isn't too bad, though sometimes it's hard to tell if what he says is company policy or not. With others, it's like they're sitting there, nodding and listening, but it's just going in one ear and out the other. And frequently they contradict each other. One manager will say they're allowed to do something, while another will say they're not.

Like the manager that pulls our associates for trucks – our boss insists that [the other manager] is not allowed to take our associates like that, but she does it anyway. No one stops her. I tell the associates to hide when she goes calling for them, praying that she doesn't come hunting us down. . . .

Encouraged to Quit Due to Disabilities

Q: How long have you worked at Walmart?

Several years, off and on. This is my third time working at this particular store. I started shortly after high school, before I went to college for the first time, so that was two or three months there. A second time before I moved to New York, after my warehouse job, I think that was another year. And this time I started in July 2010.

The first two times I worked [at Walmart], it wasn't that bad. But that was before I [brought up] my disabilities with them because at the time, [my disabilities] weren't causing me many issues, so I didn't want to expose myself to trouble when I didn't have to. Though that is when that one arm thing happened.

It was the third time, this current time around, that things started getting messy because of how much my illnesses have been affecting my life overall. That's when I started speaking out more about it. That's when mistreatment started to become more clear; I could see how it was happening to people around me just as it was happening to me.

Q: Let’s talk about some examples. You tweeted this on November 1:
...the lowest number of hours i can work per week is 16. my boss suggested that i "leave until [i] feel better." #walmart #disability"
What’s the story here? What did he mean? I'm particularly curious because you requested leave under FMLA and got no response.

He knows that the winter season makes my conditions flare more in comparison to other seasons. That's one of the reasons why I was trying to get my hours reduced, especially since I'm attending school at the same time, which just makes things even harder and more stressful. So he said that I could leave to take a break until I felt healthy enough to work again. He also said that I'd be leaving on a good note, suggesting I'd be able to return without issue, but with the attendance issue that could change.

I'm just flabbergasted that his first response was telling me to quit. What kind of boss says that to someone that's been dedicated about working?!

He also said that they would try to get me a copy of the writing that said that requirement, because I explicitly asked for it because no one else had ever mentioned it as a possibility before. Haven't seen any such papers.

Q: The requirement/papers you're referring to is the supposed requirement that you have to work 16 or more hours, even though you have a reasonable accommodation granted that you work 12 hours a week max?

Correct. Though the accommodations don't include the 12 hour restriction. That came from an hourly availability request that doesn't link to the ADA. I didn't ask for the 12 hour a week restriction until much later, July of this year, due to a really bad Fibro flare. The request did come from my doctor.

And when I spoke to my immediate supervisor, our department manager, about my schedule not having any hours for the next two weeks and mentioned the 16 hours thing . . . he looked surprised as hell, as if he had never heard of such a limit.

Q: Oh yes. I saw your three tweets about the scheduling weirdness on November 12:
...ok. something's wrong. two weeks in a row and i don't have any hours scheduled for work. what the fuck is going on?
i expected the one week to be a fluke. but two? back to back?
if this is 'punishment' for asking for limited hours for the sake of my health and education, i'm going to be pissed right the hell off.
That was also the same day that I watched the system bring up that I had a weekly restriction of 12 hours – the same restriction I had been trying to get for months. It didn't bring any protest about being under 16. Just that we were trying to schedule me for more than 12.

After speaking with my supervisor about the lack of hours, I don't think it was [retaliation], no.

Q: So, your boss – the guy who suggested you quit – is that a different person than your immediate supervisor/department manager?

Correct. For some reason, we have an oddly high number of management positions. That's also something that's bothered me. There are so many different kinds of “managers” that one can go to, and sometimes it's hard to tell who you're supposed to be speaking to, or even what their position is. Some of the ones I can think of off the top of my head are Customer Service Managers, Department Managers, Assistant Managers, Zone Managers, Shift Managers, Co-Managers, and the Store Manager It's even more frustrating when one manager says that another manager can take care of something, but they can't, or they say they can't.

It's especially confusing when a customer says they want to speak to management, and they don't understand why you ask what they're inquiring about so you can get the right manager. Honestly, I agree with them, I don't know why we have so many either! When people are like, "I just want a manager," we can't explain that we don't have just managers.

Stymied in Efforts to Provide Quality Customer Care

Q: You’ve mentioned being “dedicated” to your job and wanting to do right by the customers. I get a feeling that you take pride in providing good customer service. Do you feel frustrated when you're not able to do that?

Very much so. I enjoy being able to help people, even if it's just helping them find something. If I can do something to make a person's life easier for them, even just something small, that's enough for me. It's what drives me about a lot of things, including activism and even just being friends with people.

But when I have to constantly jump flaming hoops, or when it seems like those hoops are constantly moving when I'm trying to reach a goal, it frustrates both me and the person I'm trying to help. I can't get them access to the things that they need on the other side, and it makes me feel sad inside, quite deeply.

I feel like I would enjoy my job a lot more if the system I was working in didn't feel so stilted and broken.

Q: Is that one of the reasons you have returned to work for Walmart – to provide good customer services?

That's part of why I've returned there, yeah. The other part is that around here, it seems like they're the only place that will hire me. Be it due to the economy or disability [discrimination]. A lot of customers don't seem to realize that there are some of us who legitimately want to help them. It's hard to know what they think in terms of my specific situation, since my job is pretty much the pillar point of giving them access to one department or another, or management. I don't know if they consider it to be a failing on my part (though sometimes that becomes pretty clear) or if they think the failure is on the side I'm trying to reach.

It's easier for them to tell the struggles when they're physically there with me, because they can see me trying to get a hold of the managers. When you're on hold on the phone though, you can't see that.

The fact that I work nights makes it even harder. There's a lot less people working, then. So you can't reach [managers] as easily.

As someone who works the phones, I will admit right off that I don't even like calling our store. It's terrible. Even when we really try, sometimes we have to redirect calls five times to get through, or customers will be waiting half an hour.

And part of it is because departments seem to be poorly managed and disconnected – even with the number of managers we have.

Q: You want to help people and make their experience pleasant and productive, and yet you know that they likely will not experience that.

Exactly. It's terrible. There have been a few instances where it felt like I was really able to make a difference, but they're few and far between.

There was this one customer I had, who was completely colorblind. He asked me which shirt out of two looked best on him and seemed to match his clothes, since he couldn't differentiate between the two of them since they were the same style. After that, I helped him find a matching tie of a close enough shade. That was pretty hard; we didn't have many anywhere close to that color, but we managed to pull it off. That made him really happy.

I've had other customers that have difficulties with wearing particular bras. One lady, I helped her find a bra that didn't contain any metal and opened from the front instead of the back, because she was having an MRI and a chest operation done. She needed something that wouldn't be very tight but still provide a decent level of support. Not something I could have easily done, seeing as I can't even wear them! But we managed to find something in the sports bras that she was satisfied with. I've also helped customers come up with innovative costume ideas, when they can't find something they want in the Halloween section or it's out of season by putting things together from other departments.

Q: It sounds like some of your most satisfying work experiences have been connecting with customers with disabilities or health issues -- people who don't "fit the mold" -- and with getting creative, in general.

Pretty much. I'm one of those customers myself, and very few people “get” that sort of situation. So it makes me feel better to let them know that hey, there are some of us that do get it . . . and we can help out in any way we can.

But yeah, disabilities are a major focal point of my life. Even the tiniest of things winds up revolving around them. They're always a factor in daily life, so it just comes naturally. And it helps to show people that they're not alone, especially in an area that is this rural.

Low Pay, Lack of Insurance, Rationing Medication

Q: A big issue for both people with disabilities and for Walmart workers is health care, which is also related to pay. These are central issues in the strikes. A couple of weeks ago, you tweeted this:
i found out that i am indeed eligible for medical care through my employer #walmart, with one problem...
 it would take 3/4s of my annual salary just to pay the deductible. not kidding, that's how little i earn. it's a $3,000 deductible. #walmart
 otherwise, my immediate supervisor and i cracked up constantly about the application, bc it fails to consider how sick ppl like me are.
 the options for opting out ranged from being completely healthy & mentally secure, putting money elsewhere [vainly] and already having care but not once for 'i can't afford this shit, i work for you! how would i be able to afford it?!'
 one of those instances where even the health reform law doesn't help me by forcing employers to provide healthcare. too sick, too poor.
 maybe if the companies that people like me worked for weren't such corporate leeches... 

Care to elaborate?

Yeah, the health care set up is atrocious. I've been “eligible” for it for the past two years – though the associate working in HR [continues to] insist otherwise, quite rudely. I applied for Mainecare under the premise of disability and was denied earlier this month. They claimed that I can still do “light work.” As if being able to work somehow means I don't need health care, or that my health doesn't directly impact my ability to work. On our way back to the HR room to deal with the open enrollment, my supervisor and I were commenting on how pointless it is, because most of us are already on Mainecare and that does a better job of covering things and you don't have to pay for it. Even the healthy people prefer Mainecare over the Walmart insurance.

I don't know what the system structure is like, though I've heard that the places that actually accept the insurance are slim and far between. I wager that most of my current doctors, who I wouldn't give up – period – wouldn't accept it even though they accept Mainecare.

But honestly, offering us health care with a deductible that costs nearly as much as our annual wages is ridiculous. If they're going to offer us health care with that high of a deductible, they need to pay us more to accommodate for it. We barely make enough to eat and keep roofs over our heads, let alone be able to see a doctor.
I make $8.50 an hour. With my number of hours, I make maybe $600-700 a month. That's enough to pay rent and maybe food, depending on the kind you buy, and never taking dietary needs for IBS [irritable bowel syndrome] or other conditions into consideration. There's nothing left for medical care.
A dark blue background with a yellow moon-face with its mouth open in an Oh looking shocked. In black it says This Black Friday and in white it says Boycott Walmart

Q: So you are uninsured right now because you were denied Mainecare?
Correct. Right now I have to pay everything out of pocket. Only reason I'm managing currently is because I have pain meds stashed from a previous remaining refill, before I ran out. Otherwise I have to see my doctor to get a new one. The last time I refilled it, I had to use one of those federal savings programs. The only reason I knew of them is because my fiancé works in pharmacy and told me. It dropped my med price of over $200 to around $47 for that month.

Since then, I'm rationing them.

Q: Do you worry about what will happen if you get a really bad flare and run out? That always terrified me when I was getting too few and too ineffective pain meds. It felt like walking a tightrope.

Absolutely. It's why I have money stashed in case of emergencies, because I know that it can always happen. I spent a large portion of my life while sick without adequate care or insurance, so I learned the hard way. I'm very lucky that I can live with my parents right now, so I don't have to pay rent or utility bills, though lately I do have to worry about food.

The refill that I have was for a rather large number of pain meds, 120 of them, and I don't always need to take them on a daily basis. They're from my really bad flare in July. So that helps, it's better than when I had to ration 15 throughout an entire year.

But right now my ribs are out again, and I will likely have to pay out of pocket for [treatment]. It's affecting my work and means I have to take more meds. I'm not looking forward to winter. And without access to my doctors unless I pay out of pocket, I cannot apply for medical leave until I recover. So like my boss said, if it gets bad and I'm uninsured, I really would have to quit.

Isolation, Rural Location Make Organizing Difficult

Q: Are you involved in the strikes or protests?

I haven't been able to participate much in things like the strikes or protests, but I've still been trying to boost the signals of the cries of others. As far as I am aware, there is nothing organizing in my area. When I searched on the organization websites for any strikes or protests in the area near me, nothing came up. No one seems to talk about it at work at all, either. At least, not that I've heard.

Our area is fairly rural in comparison to the larger cities. Not only that, but our largest city is over an hour's drive away. I commute to work about half an hour as it is.

Q: You mentioned in an email to me feeling isolated by being rural.

Very much so. There's very little up here in terms of support for just about anything. Just finding out about the fibromyalgia support group that was in the neighboring towns was a big deal. I expected to have to drive hours [to find] one, or be [unable to find one] in general.

So that's the sort of thing that makes organization really hard for something like the Walmart strikes, especially if you deal with other boundaries due to being disabled. There's a lot of folks that can't go much of anywhere because the transportation they have access to will only take them out twice a week [which just covers] grocery shopping. I'm lucky in that I have a car. A lot of people don't, and if I didn't, I'd be in poor shape too because the city bus system doesn't reach out this far.

Q: Let’s talk about the planned strikes and walkouts going on now and later this week. A lot of the issues you've brought up are part of the demands made by associates at the OUR Walmart page – wanting respectful treatment from manager, affordable health insurance, living wages, and supporting associates in providing the customer service that Walmart is supposed to be founded upon. What you think of the Declaration for Respect created and circulated by Walmart workers? Did you sign it?

I definitely signed, and I encourage other people to sign. I've pushed it on Twitter and among those close to me that know of my struggles with the company, like my fiancé. I would participate in a strike if there were one around here and if it wasn't such a small area [where] people are more easily identifiable. If someone had started something to talk about it when I was looking for such groups, I probably would have contributed. But I didn't find anything for Maine. Around here, when it comes to news issues, it frequently feels like things that happen "out there" instead of here. Like such things don't happen in this state.

But I also support people that can't strike because they worry about the stability of their jobs, which would be just as much of a concern for me, or stability with their coworkers that may not agree. The latter is especially true around here, when it seems like no one talks about it or when you do bring up the strikes at work, people don't seem to care. I had to sign [the declaration] anonymously because of how specific my [disability] situation is.

As a passing comment, [I’ve asked] people what they think of it – usually the coworkers in my department that I have a good relationship with, not [relationships] that [are] easily shaken. [I asked] one person, and she seemed rather indifferent to the whole thing. Bringing such things up at work can be really risky. With so many managers, and ones that are continuously walking through the store to keep tabs on things, you have to be careful of what you are talking about, with whom and why. But it also sort of reflects the lack of push-back against our management in general. People will have individual issues with [management], but they won't organize to talk about it. At least, not here.

Q: It sounds like you think your fellow associates don't see their individual problems with management as being part of a larger?

Pretty much. Like, a few years ago even I wouldn't have realized that my issues were part of the overall problem.

Q: How did that change?

Social push-back throughout the country. Hearing about the strikes tipped me off, just as hearing about how frequently such organizations seem to take advantage of or somehow wrong folks with disabilities did. Making myself more aware of social issues.

A poster showing a black sky with a light beaming 99% into the sky like the batman signal over a Walmart in an empty parking lot. In big white letters it says, Black Friday Boycott Walmart. Support workers striking for fair wages and fair treatment! Want to do more?

“Listen to Us, Provide Moral Support”

Q: Final question: What three things would you like everyone who reads this article to do to support Walmart workers like you?

Signing the petition is a big step, since it'll show that we're not just people whining about things, that others support us and understand that our needs are legit and a part of basic human rights.

If someone you know works for Walmart and they talk or complain about something that happened that reflects on such issues, or mistreatment toward them, listen to them. Let them know that you're listening, and provide them moral support.

If you can, spread the word – don't let this fall into isolation, because if it does, change will never happen. Companies like this are stubborn and need to be really shaken for them to get the picture. They need to be held accountable, and the only way we can do that is by making the most noise we possibly can.

Q: Those are three very clear, very easy, doable requests**. I noticed you didn’t mention the strike and boycott? Do you think there's any chance of that happening in your area?

I'd love it if they boycotted, and I would [boycott, too] if it weren't for the fact that it's one of the cheapest stores around here and they only pay me enough to buy their products! The chances of [a boycott] happening though are pretty slim. I certainly get enough calls about when Black Friday or the deals start to suggest that [people are not going to boycott].

Q: Well, here's to hoping!


Q: Thank you so much for your time! This was fun, and I learned a lot.

You too. Thank you very much for giving me the chance to speak out about this.

*Static Nonsense is an avatar – the name that the person I interviewed uses online.

**Additional ways to support Walmart workers are to boycott the store during the strikes and protests, making donations to feed the workers who are striking this week, or any of these very simple actions: sign a solidarity statement with Walmart workers, sign a petition asking Walmart to allow workers to spend Thanksgiving with their families, and sign a pledge to boycott on Thanksgiving and Black Friday.

Wednesday, November 14, 2012

Free Webinar on Demanding Stronger Regulations of Toxic Cosmetics

Breast Cancer Action is hosting free webinars on Monday Nov. 26 and Friday, Nov. 30 on how to take action in eliminating chemicals with known or suspected health risks in everyday personal care products. According to Breast Cancer Action's website:
Last month['s webinar] talked about the unique role our government plays in regulating toxins and chemicals so they don’t make it into our food chain, our water, the air we breathe and the beauty and cleaning products we use all day, every day. This month, we invite you to participate in our free webinar, featuring two of our partners—the California Healthy Nail Salon Collaborative and the Environmental Working Group, to present “Toxic Cosmetics Part II: Demanding Stronger Regulation.”
For more information, or to register, please visit BCA's webinar site.

Thursday, November 8, 2012

Help Undo Classism in Maine: "No Class" in Lewiston 11/17

If you grew up poor or working class, are low income now, or know others in those categories, we especially want you/them to get involved in No Class.

Help No Class to Undo Classism in Maine—Come to Lewiston on November 17

Does Class “Warfare” exist in the United States? Sure it does, and it has for centuries, at least from the time Europeans arrived on this continent. There’s been class discrimination, with the wealthier trying to exert social and economic power over others, ever since.

If you really hate classism and want to do something about it, this announcement is for you.

No Class was formed in Maine about ten years ago to undo many of the effects of classism on our state. It has talked about classism, that 900-pound gorilla-of-an-issue few recognize or do something about. The group has done workshops for groups on how classism hurts our state and all our people, done consciousness-raising for those raised working class or poor, brought up sliding scale costs for events and services, and been a voice in Maine for ending classism.

We in No Class need new people to join us and speak out against class discrimination, especially discrimination against those who are low income or working class. We have a core group that continues, but we need new members to get involved. We especially want people who grew up poor or working class or who are low income now.

If you’d like to become a part of No Class or at least check us out, we’ll be meeting on Saturday, November 17th, 2012, from noon to 3 PM in the first floor meeting room of the B Street Community Center, corner of Birch and Bates Streets, in downtown Lewiston near Kennedy Park. We’ll have a potluck from noon to 1 PM, then see what ideas older or newer people would like to see No Class work on from 1-3 PM. We want to start working on specific projects again, too.

If you want to find out more, need directions or transportation, or are interested but can’t come on November 17, contact Larry Dansinger, No Class, (207) 525-7776 or

Thursday, November 1, 2012

Mass. Voters Face Assisted Suicide Ballot Question

by Sharon Wachsler

Although it is not on the Maine ballot this year, assisted suicide referendums are becoming more common, and there's a good chance that Mainers will face this question again eventually. Currently, Oregon and Washington have passed assisted suicide laws by ballot question, and Montana has legal assisted suicide as a result of legal precedent.

Meanwhile Massachusetts voters will be asked to vote yes or no on this issue on Tuesday. Disability rights activists are battling against the Commonwealth's generally liberal point-of-view to show that this law is not necessarily the choice for all progressives and social justice advocates.

The Cambridge Commission of Persons with Disabilities (CCPD) voted to oppose the ballot measure. Some of their reasons:
At first glance, Question 2 might sound like it gives individuals choice and autonomy, but the experience in the two states that have passed such laws leads CCPD to be very concerned. Modeled after Oregon and Washington’s assisted suicide laws, Question 2 fails to correct problems that have led to documented cases of abuse, discrimination, and pressures to choose suicide over medical treatment based on cost considerations.
 The National Council on Disability (NCD) also opposes the measure. Their Position Paper on Assisted Suicide states that:
The dangers of permitting physician-assisted suicide are immense. The pressures upon people with disabilities to choose to end their lives, and the insidious appropriation by others of the right to make that choice for them are already prevalent and will continue to increase as managed health care and limitations upon health care resources precipitate increased ‘rationing’ of health care services and health care financing.
The so-called ‘slippery slope’ already operates in regard to individuals with disabilities…If assisted suicide were to be legalized, the most dire ramifications for people with disabilities would ensue unless stringent procedural prerequisites were established to prevent its misuse, abuse, improper application, and creeping expansion.

Disability rights advocates point to a number of serious flaws in the Massachusetts law. Again, quoting from the CCPD newsletter:

  • Lack of safeguards. The current language shows a striking lack of oversight and safeguards, putting people at risk of being misdiagnosed and receiving inadequate treatment (including mental health treatment). This is a recipe for elder abuse -- according to the Patients’ Rights Council, already 1 in 10 Massachusetts elders are abused, an increase of 31% in the last three years.
  • Delegated Decision-making. The proposed law has a marked lack of clarity as to the impact of existing state laws regarding Health Care Proxy and Durable Power of Attorney in implementing assisted suicide. Under this initiative, an heir could be a witness and help someone sign up for assisted suicide despite a potential conflict of interest. Once a lethal drug is in the home, there is no requirement for professional oversight to monitor how that drug is administered.
  • Expected Survival less than 6 months. A physician must diagnose a person as having a terminal condition with 6 months or less to live, opening the dangers of assisted suicide to many who are not terminally ill. Experience in Oregon and Washington shows that many people who appeared qualified within the defined time span, but declined assisted suicide, lived months or years beyond the doctor’s estimate, or even survived to recover from their disease.
  • Lack of Mental Health Screening. The proposed law does not require an independent mental health evaluation of persons requesting lethal prescription medication (two physicians must agree that a patient qualifies for assisted suicide, but there is no requirement for either of them to be psychologists or psychiatrists). This reflects a widespread cultural and scientific bias that people with terminal diagnoses who ask for help to commit suicide are not in need of a screening for depression or an evaluation for any other mental health diagnosis.
  • Continuity of Care. The proposed law does not include any requirement to investigate cases where physicians who have known a patient over time have found the patient ineligible for the criteria for assisted suicide. Physicians new to such cases who agree to assist in suicide are protected under the proposed law if they simply claim they acted in “good faith” -- a standard so low as to make any purported safeguards unenforceable.
Nobody is in favor of suffering -- whether dying or living. Advances in palliative care and hospice medicine have made great strides in the last two decades. Yet the proposed law offers suicide as a resolution to suffering without any requirement that all avenues of palliative treatment be exhausted to alleviate a patient’s suffering before suicide intervention.

This is why Massachusetts disability rights activists who have been studying -- and affected by -- debates over assisted suicide and euthanasia have named their group, "Second Thoughts." Because not only do people who sometimes decide they do want to kill themselves due to their diagnosis sometimes have second thoughts about that decision, but also because those who might reflexively think, "Yes," at reading Question 2 might not know all the facts, and if they did, have second thoughts and decide to vote no.

For myself, I always think of Diane Coleman's statement, published in the New York Times, "It’s the ultimate form of discrimination to offer people with disabilities help to die without having offered real options to live."

For further information on this topic, please visit Second Thoughts or NDY's Assisted Suicide Talking Points.

People with Disabilities Affected by Hurricane

The storms that slammed the East Coast earlier this week -- with a particularly brutal impact on New York City and New Jersey -- have affected everyone, including people with disabilities. In some cases, there have been fatalities. An elderly woman in New York City died when her oxygen machine lost power.

Meanwhile, with millions without power and other utilities, many New Yorkers with disabilities are struggling. A Manhattan couple, Nick and Alejandra, who both have disabilities and live on the twelfth floor put out the word on Facebook to ask for help. Nick uses a ventilator. Without power, he has needed his vent battery recharged every three hours. Fortunately, there is a fire station across the street where the batteries get charged, but they've needed people who can climb the stairs to swap the batteries out. The way people have come together has spread beyond Facebook and been published in the mainstream press.

While the storms did not have the expected disastrous impact on northern New England, at Ability Maine, we're curious to hear from you: Has Hurricane Sandy affected you?

Also, if you know people in New York City who are willing and able to help Nick and Alejandra, please send them this link to their Facebook request for help.

UPDATE: Some creative crips -- friends of Nick and Alejandra -- figured out how to run Nick's vent off a car battery! Social networking, geek knowledge, and DIY powered the solution!

Monday, October 22, 2012

Breath & Shadow essay ~ Persistent Demons of War: A Story of Prolonged PTSD

by Sharon Wachsler

The Fall 2012 issue of Breath & Shadow, Ability Maine's journal of disability literature and culture, is up now.

This edition's essay is a gripping and heartrending story by Arthur W. Schade, "The Persistent Demons of War: A Personal Story of Prolonged PTSD." Schade reveals that it took him three years to write this essay, and it was time well spent. While reading, I sometimes found myself leaning into my computer screen, my teeth clenched, while other times tears sprung into my eyes or a laugh burst from me.

Schade begins his story as an eighteen-year-old entering the Marines and being swept up in the chaos and confusion of enlistment and training: noise, strange surroundings, and, well, naked male butts!
We went through lines of examinations and stood around for hours, recognizing one another's bare asses before we could learn each other’s names. We did not realize so many of us would remain together in squads and fire teams, building deep-seeded bonds of friendships along our journey. Our initial ‘shock’ indoctrination began immediately at Parris Island; intimidating drill Instructors scrambled our disoriented butts off the bus, organized us into a semblance of a formation, and herded us to the barracks for a night of hell.  Following what we thought would be sleep (but in actuality was a nap), we awoke in awe to explosive clamor as the DIs banged on tin garbage can lids next to our bunks, yelling “get up you maggots.” Even the largest recruits trembled. Flooded with anxiety and apprehension, already we were second-guessing our decision to enlist.
Everything changes from literally the moment that Schade stands on Vietnamese soil, revealing a shocking mishap that I had never even known was a danger of war. He describes how just fourteen months in 1966 and 1967 changed him forever and left him feeling out of place among his nineteen-year-old peers when he returned the United States. Yet, for decades he managed to keep his "demons" to himself -- the nightmares, anxieties, and other symptoms of post-traumatic stress disorder (PTSD) -- and "pass," explaining how and why it was so important to him to cope the way he did. Until the option to keep everything under wraps was yanked away by a new war:
When the first Gulf War began in 1990, I sensed the demons bursting from within. No matter how hard I tried to avoid them, I saw vivid images and news coverage of every aspect of the war. The bodies and faces in the media were not strangers anymore. Instead, they were my brothers from a much older and forgotten war. I sought refuge with the Veteran’s Administration and began attending group therapy.
Connecting with fellow vets and PTSD survivors took Schade on a new journey he shares with Breath & Shadow readers. I am moved and grateful for having read his story. I learned a great deal from being able to learn from what Schade witnessed, heard, felt, and did before, during, and after his tour in Vietnam and his time now as a warrior in supporting veterans with PTSD.

Read Arthur W. Schade's essay at Breath & Shadow here.

Sunday, October 21, 2012

Senate Candidates Dill, King Address Homeless; Disability a Major Factor

Ability Maine posted previously that Senate candidates Cynthia Dill (Democrat) and Angus King (Independent) addressed a forum sponsored by the Disability Rights Center while Charlie Summers (Republican) was absent. The same thing happened at a forum to discuss homelessness on October 11 in Portland -- a forum where the topic of disability was raised frequently.

The event, sponsored by Homeless Voices for Justice and the Preble Street social services agency, included a tour of the facility, a meeting with staff and clients, and a question-and-answer period with the candidates. According to the Portland Press Herald's coverage,
Dill promised to be a strong advocate for spending federal dollars on programs for the poor and those in need, rather than on wealthy and powerful interests that can afford lobbyists. She said she stood up for the poor in the state Legislature and would do the same in Washington.
King focused on the costs to citizens associated with homelessness:
King said he wants Congress to do its job, reduce the federal deficit and stabilize the budget so that affordable-housing programs and other services are no longer in danger of deep cuts.
 According to the Portland Press Herald, a member of the audience said that she's stuck in a homeless shelter until her disability benefits are approved, which might take a year. "I cannot survive that long," she said.

Another disabled Mainer, Kenneth Tilley, 61, said he was glad that the candidates saw where he and others slept on cots each night: "No matter where you come from or where you were, everybody in America has a chance to be homeless."

Both candidates, as well as many advocates and homeless persons, criticized Summers for not attending, saying that that was an indicator to them about his lack of care for homeless Mainers.

Note: Some quoted in the article, as well as dozens of comments discussing it, are concerned that King and Dill will split the liberal and progressive votes and giving Summers the win as a result.

Positive Outcomes for Transition Project for Maine & NH Youth on Autism Spectrum

From an October 11 article in the Bangor Daily News:
A collaborative study from the universities of New Hampshire and Maine has found that youth with autism spectrum disorders (ASD) benefited significantly from a family-centered transition services model, with 90 percent of participants finding employment after high school.
Students in the trial were ages 16 to 18. Among the positive findings were that those who participated in the project (chosen randomly) "had significantly higher student expectations for the future, parent expectations for the future, self-determination, and vocational decision-making ability than a control group."

Although it should be no surprise to disability rights advocates that providing individually tailored, person-centered approaches in people's home communities and environments works better than the alternatives, it's heartening to have this supported by research. But what is the Family Centered Transition Project and what do they do? Here's information from their website:
The transition services consist of three components over a 6-8 month period:

  • Training sessions where families learn practical strategies for person-centered planning, networking, and utilizing a variety of adult service options and resources to design and work towards a positive future beyond high school. 

  • A series of individual planning meetings to plan post-high-school goals, held at the convenience of each student and family, with assistance from a project planning facilitator. The planning results in a family-centered plan with specific goals and an implementation plan. Other family members, friends, and community resource people may participate in one or more meetings as called for by the student and family. The facilitator meets with each student to prepare them for maximum participation in these planning meetings. 

  • Ongoing assistance from a planning facilitator in implementing student plans. This includes career exploration activities with students to investigate career options, such as (a) informational interviews, (b) job shadowing experiences, (c) online or in-person investigation of post-secondary options, and/or (d) unpaid or paid work experiences. Project staff assist students and families to incorporate elements of student plans into their IEPs.
  • The initial study served 47 young people. The project will continue with three year's worth of funding from the National Institute on Disability and Rehabilitation Research (NIDRR) and will be coordinated in Maine by the Autism Society of Maine and by the Strafford Learning Center in New Hampshire. According to the news article, these organizations plan to work "with schools, developmental service agencies, and vocational rehabilitation agencies to redirect and blend existing transition service funding to support FCTP’s process so more students and families can experience positive outcomes."

    David Hagner of the UNH Institute on Disability says that the goal is much farther reaching than just the next three years: “We use grant funds to fill in gaps while we work on developing and marketing the service, with the expectation that it will be sustainable after the three-year project is over.”

    We'd love to hear from you if you took part in this project! Is it something you'd recommend to others who are graduating from high school and looking toward work and careers?

    Wednesday, October 17, 2012

    Children's Essay Writing Contest on Disability

    by Sharon Wachsler

    A disability law website is running an essay contest for children in New England, grades 2 through 6, on the topic of "how someone with a disability has inspired them." The word limit is 500. The deadline is October 31.

    According to the listing in the Bangor Daily News, "In an effort to encourage disability awareness among students, Social Security Disability Help, is hosting our first ever New England Disability Awareness Essay Contest."

    Although "inspiration" is not a theme that this disability rights activist generally thinks of as a useful tool for disability-awareness raising -- there is already so much "inspiration porn" in the media about disability -- since role models of other kids and adults with disabilities can be so useful to kids with disabilities, and so scarce, I'm hoping a disabled kid will be the winning writer! Plus, you're never too young to learn to write something persuasive or moving.

    Several winners will be selected. A cash prize will be donated to the charity of each winner's choice; they will also each receive a gift card from Barnes and Noble.

    For details on the contest, check out this listing, or call Molly Clark at 857-366-7629.

    Tuesday, October 16, 2012

    Activist Alert & Breaking News: How YOU Can Support ADAPT Now!

    Disability Rights Activists Take Action to Preserve Medicaid & Attendant Care

    Pennsylvania Cuts Reflect National Issues; Police Brutality, 83 Arrests in Struggle to Save Medicaid in the Keystone State

    by Sharon Wachsler, October 16, 2012

    As we posted yesterday, disability rights activists from around the country have converged on Harrisburg, Pennsylvania to convince lawmakers to change course on the devastating cuts to Medicaid that are harming people with disabilities.

    The protests and efforts to affect change started on Sunday and continue through Thursday (October 18). Today's activism saw 83 arrests and \police brutality that was captured on video (see below).

    Yesterday, Governor Corbett refused to meet with ADAPT, though activists attempted to make headway with other key lawmakers, including Senator Jack Corman and Representative William Adolph, but nothing that led to concrete action or meaningful meetings.

    According to Philadelphia independent living center, Liberty Resources, over 300 protesters are involved in the ongoing action.

    ADAPT's website describes what's at stake as a national issue because
    Pennsylvania was in the process of "rebalancing" its system to more effectively support seniors and people with disabilities living in the community rather than relying on institutional placement. The state had also become a national leader in allowing people with disabilities to manage their own assistance and utilizing Centers for Independent Living in the provision of home and community based services. The Corbett administration has destroyed much of this progress by cutting funding for Pennsylvania's Medicaid home and community based services and implementing sweeping changes to the state's infrastructure for providing home and community based long term services and supports. ... 
    ADAPT believes the choice should be clear because the US Supreme Court has determined, in the Olmstead decision, that under the Americans with Disabilities Act people with disabilities have a fundamental civil right to receive community based services and supports from Medicaid as an alternative to being forced into a nursing facility or institution. Furthermore, there is federal funding to make these important changes.
    At about 5:45 PM today, police became violent with protesters inside the Dept. of Public Welfare offices in the PA state capitol. ADAPT members posted this video on youtubeHarrisburg Police Assault ADAPT Protesters at DPW

    Video description: Harrisburg Police Assault ADAPT Members at the Department of Public Welfare building on October 16, 2012. A four-minute video of many people, most in wheelchairs, at least one blind man standing up, and many male police officers in an enclosed indoor space. There are glass doors that the police seem to be trying to close or pull people through. You can see an unidentified woman get pulled by her pony-tail over a wheelchair and onto the floor, and there is screaming, and then police remove the hat of Joey Tate and also pull him in through the doors by his hair as ADAPT members shout over and over "Nonviolent!" and "No violence!"

    The press has slowly been picking up the story, including written and video pieces last night by CBS affiliate WHPTV CBS21 News and today by

    What You Can Do to Help

    Options for Those In PA and Elsewhere to Make a Difference

    For those out of state and CAN'T get there in person, here are the most useful actions you can take to make a difference:
    • Follow National ADAPT and PA ADAPT on their web pages, Facebook, and Twitter. Share their tweets, status updates, pictures, and videos! Ask others to get involved and spread the word, make phone calls (see below), and lend support in person, if possible. (PA ADAPT on FB and PA ADAPT on Twitter.)
    • If you can make telephone calls, call Pennsylvania Governor Tom Corbett and tell him to work with Pennsylvania ADAPT to implement Community First Choice. Call him at 717-787-2500 (voice). You can also call Dept. of Welfare Secretary Gary Alexander at 717-787-2600 and tell him to meet with ADAPT.
    • If you can't call, email Secretary Alexander and Governor Corbett.
    • Pam Auer of Central Pennsylvania ADAPT urges, "Try to do the same thing in your state. Encourage people to support CFC [the Community First Choice option] -- in Pennsylvania and every state across the nation. This will mean more funding and flexibility in every state."
    • Savannah Nicole Logsdon-Breakstone, a member of Occupy Pittsburgh and a supporter of PA ADAPT who is not normally able to get transportation to ADAPT events suggests some creative ways of bringing attention to the issue: "Share the messages that National ADAPT have been tweeting/sharing. If you can call, call the numbers they list. Take photos holding signs of solidarity, and make videos about why Medicaid is important -- why it matters in your life. When you share photos/videos, tag National ADAPT and PA ADAPT and write what state you are posting from."
    If you CAN make it to Harrisburg tomorrow (October 17) or Thursday (October 18), that is very helpful!

    You do not have to have experience as an ADAPT protester! Everyone is welcome to help! Here are some ways to be useful:
    • Show up! Especially if you can come before or during the rally tomorrow. MY MEDICAID MATTERS Rally, scheduled for October 17th, 2012 , Capitol Building, Fountain Entrance, 1:00 pm, rain or shine. If there is inclement weather, we will be meeting inside at the Main Rotunda at 1:00 pm.
    • Auer says, "For the next two days, being there, being another voice, a body" matters.
    • "If you're near the train/bus station (Amtrak/Greyhound), directing people how to get to the Capitol is very helpful. Direct them to the Fountain side (the Commonwealth side) because there will be a rally at the fountain." (See below.)
    • The weather has been cold and the days have been long. If you can bring warm gear (blankets, sleeping bags, etc.), hot food and drinks, that will also be helpful. As always, brings signs, bring your stories, your passion. Be ready to listen to instructions from ADAPT leaders. Bring your phone, camera, video cam to document what happens and to spread the word.
    The Commonwealth of Pennsylvania has already dropped tens of thousands of children from state Medicaid and cut attendant hours of adults on the PCA program, which will mean disabled citizens ending up in institutions instead of staying at home. Logsdon-Breakstone says, "I'll be there tomorrow and bring the board of Self Advocates United as 1 (SAU1)."

    "My Medicaid Matters" Rally Wedneday, Oct. 17, Capitol Building, Fountain Entrance, 1:00 PM rain or shine. (If bad weather, meet inside Main Rotunda). For more info, see PA ADAPT Facebook page.

    Please spread the word and get there if you can!

    Why should you come to Harrisburg? This legislative session may fundamentally change “Medicaid As We Know It” in ways that we won’t like unless we tell them what we want in any reforms they propose. NOTHING ABOUT US WITHOUT US! We are beginning to see people returning to institutions. We continue to watch the dismantling of one of the country’s best attendant care waivers and the destruction of small, effective community providers. Community Mental Health services are disappearing, and the future of these services are in jeopardy, becoming almost non-existent. When Medicaid is reformed, we better be at that table.

    ADAPT spells out ten demands. Governor Corbetts administration must develop an Olmstead plan which does the following (further details on each item are on the ADAPT website):

    1. Engages ADAPT, the state's extensive network of Centers for Independent Living, other disability-led advocacy organizations and legal advocates in the development and monitoring of the plan and its individual components 
    2. Shifts Medicaid funding for long term services and supports so that at least fifty percent of those funds support home and community-based services by 2015 
    3. Selects and implements the Community First Choice Option 
    4. Establishes specific benchmarks and regularly provides public reporting on the state's progress in achieving these benchmarks 
    5. Assures that people with the most significant disabilities receive the services and supports they need to lead an independent and integrated life in the community 
    6. Changes state rules to allow attendants to perform health maintenance tasks for people who need them as a long term service or support so that individuals who need this assistance can live independently in the community 
    7. Leverages the state's network of Centers for Independent Living and other non-profit disability-led providers committed to the independence and integration of people with disabilities 
    8. Establishes Medicaid rates that support a living wage for attendants and sustains the community-based organizations that assist people in living independently 
    9. Restores the funding systems that local counties use to support mental health and developmental disability programs 
    10. Establishes leadership within the state who truly supports home and community based services as an alternative to institutionalization.

    What else can you do to help? Share this article! And comment here and on Twitter about why #MyMedicaidMatters to you!

    Does Mitt Romney Have a Disability Policy?

    Up now at Ability Maine, an essay by Michael Reynolds: "Does Mitt Romney Have a Disability Policy?"

    We all know now that Romney is friends with Clint Eastwood, the outspoken anti-ADA activist and creator of the pro-euthanasia movie, Million Dollar Baby. But where does Romney stand on disability issues like the Affordable Care Act, Medicare, Social Security, and how does having a wife with a disability affect his perspective?

    Mike tries to sort through the haze of mixed messages in his discussion of Romney and disability:
    Romney does not mention people with disabilities (except for a brief reference to veterans) on his official website, although he devotes a lot of space to his plans to repeal the ACA. When he details his plans to change Medicare and Social Security, he states that his proposed plan will affect neither senior citizens who are current beneficiaries of these programs nor future beneficiaries over 55. He makes no mention of how his plan will affect younger disabled people who receive Medicare and Social Security. He also does not touch on his plans to convert Medicaid into block grants to the states, which could reduce overall Medicaid funding and have serious consequences for both PWDs and senior citizens. 

    To read the complete essay, hop over to Ability Maine!

    Sunday, October 14, 2012

    Study of Maine Workers with Disabilities Released

    A recently released report by the Maine Department of Labor offers insight into the state of employment and disability in Maine, according to a press release by the LePage administration.

    October is national “Disability Employment Awareness Month,” and in response, Maine's DHHS and BRS have released Snapshot 2012: Maine Workers with Disabilities. The document
    . . . presents an overview of employment status and services for people with disabilities in Maine. It illustrates the types of challenges facing individuals with disabilities who are interested in entering or re-entering the workforce and the importance of support services.
    Some notable stats from the snapshot:
    • More people in Maine are disabled -- 16 percent versus a national average of 12 percent, while 13 percent of working-age adults have a disability
    • Maine has the fourth-highest percentage of veterans in the nation, and on average, the rate of disability among veterans is higher than among non-veterans, which likely accounts for some of the high rate of disability in Maine.
    • The unemployment rate of disabled Mainers is almost three times higher (17 percent) than the rate of unemployment of nondisabled Mainers (6 percent)
    • Forty percent of disabled Mainers are working
    • Of that 40 percent, most are still underemployed: Only 45 percent of disabled working Mainers have full-time, year-round jobs (compared with 62 percent of nondisabled workers)
    The press release indicates that the report is intended to improve employment among people with disabilities in Maine:
    Commissioner of Labor Jeanne Paquette described the importance of raising awareness of the employment needs of people with disabilities. “Employers need to learn about the benefits of hiring people with disabilities. Their presence in the workplace sends an important and positive message to customers, and the contributions they make each day are significant.” She added, “With an aging population, Maine will continue to have a need to connect these workers with good jobs.” 
    The Bureau of Rehabilitation Services of the Maine Department of Labor provides a variety of services to help people with severe disabilities get or keep a job. These services include job development and placement, job training and rehabilitation technology. In fiscal year 2011, 816 people with significant disabilities entered competitive employment and stayed employed for a minimum of 90 days after receiving BRS services. 
    Several factors influence rates of disability, including general health, social environment, economic conditions, demographic trends, environmental factors, social mores and financial incentives. Another contributing factor is the number of Maine residents who are veterans.
    Snapshot 2012 was funded by a federal Medicaid Infrastructure Grant (MIG) awarded to DHHS by the Centers for Medicare & Medicaid Services. The purpose of the MIG grant is to improve competitive employment opportunities for people with disabilities in their communities.

    Individuals with disabilities bring strength and diversity to Maine's workforce. Employers interested in hiring people with disabilities or individuals with a disability interested in learning about vocational rehabilitation should contact visit the Employment for Maine website or call the Bureau of Rehabilitation Services at (207) 623-6799.
    The complete report can be found on the webpage of the Center for Workforce Research and Information, which compiled the data.

    Breaking News: ADAPT Marches in Harrisburg, PA to Protest State Medicaid Cuts

    National direct-action disability rights organization, ADAPT, is marching in Harrisburg, Pennsylvania right now to protest severe cuts to Medicaid. The focus of the action is the governor's mansion to bring attention to state cuts that could severely harm people with disabilities.

    From the ADAPT page on the Harrisburg action:
    Like many other states, Governor Corbett's administration in Pennsylvania has proposed cutting Medicaid as a panacea to address the shortfalls in the state budget. When states cut Medicaid, they not only limit services but they cut the jobs of the people who are paid by the Medicaid funds to provide services, supports and basic health care to the state's citizens. ADAPT is headed to Harrisburg to urge him to work with advocates and the disability community to implement Real Medicaid reform that contains spending while it supports the independence and civil rights of people with disabilities and older adults, and saves jobs.
    Follow the action now on the ADAPT Facebook page or via ADAPT Action Reports or on Twitter, including Twitter photos.