UN-Healthy PA: Comments on the Current Proposed Medicaid Plan in PA

I’m terrified, and I’m angry. I normally don’t much like to do too much state-specific stuff on this blog, but I’m having a terrible time processing this out and it feels like writing a post here is my only solution. I can’t understand what sort of person would think that the proposed Medicaid expansion plan for PA is a good idea.

It’s not that I’m against expanding Medicaid- I’m a full supporter of allowing access to Medical Assistance (MA) to anyone who needs it. Indeed, I’d be on board with universal access to public healthcare. But that’s not the problem with this. Instead the current proposals undermines rather than enhances the existing system, punishes the unemployed, and threatens the health and well being of vulnerable Pennsylvanians. Vulnerable Pennsylvanians including myself.

Disability Rights Network of Pennsylvania, along with some other organizations, have released calls to action encouraging Pennsylvanians of all sorts to comment on how destructive the current proposal is. (I have posted the text of both of the emails I received from DRNPA on tumblr.) My mother posted about it on facebook with the following comment:

Pennsylvanians! If you receive Disability and are over 21, benefits are going to be cut, mental health is being slashed and there will be caps on services . I do not understand how Governor Corbett can call this “Healthy PA” when our most vulnerable populations are being underserved. If you live in PA, you probably know someone who will be affected. This was slid in around the holidays, so most folks do not know about this. Comment period ends soon, January 13. Speak up before it is too late! And share.

And I? I am terrified. Not immediately, but in that poisonous way that leaves you hyper vigilant, exhausted, and unable to do anything about it for ages. It’s not an unfamiliar sensation to me. I’ve dealt with extended homelessness, abuse, lack of access to health care, and so on in the past. I’ve been in poverty for a large part of my memory. This type of terror is a constant throb in the background that says you can’t afford to be sickyou can’t afford those “necessities,” and don’t speak, if you speak up you’ll lose what you have left. It’s a horrible way to live even if you don’t already have an anxiety disorder; when you do, it makes thinking about the next step nearly impossible.

A lot of people were under the impression, either because our governor lied to us or because they can’t imagine it otherwise, that it wouldn’t impact people either already on Medicaid or on SSI. Yet it does. Coverage  limits will be imposed, “non-emergency” emergency room visits will now have a co-pay, and MAWD will no longer be a thing.

These coverage limits will limit the number of MH related visits you are allowed a year. As someone over 21 on SSI, I would be put on the High-Risk plan. Right now, I don’t quite go over the allowed 40 visits a year because I’m not in mental health crisis, and I’m not at a point where intensive work is being done. But if I were to be in crisis and need to switch over to even one more therapy appointment a month (let alone extra MH med checks that happen in times of crisis) I’d be over the limit. And this is in the more permissive plan. Now, I have decent MH care, but a lot of people don’t. A lot of people are stuck with doctors who are demeaning and dehumanizing, and more than willing to write you up for small things. While this state of things has gotten a little better over time, it’s still an issue- and with a financial reason not to comply, those people who do have bad doctors would have one more reason to just not go.

For me this is more complicated- if I were having to discontinue my MH treatments, I could lose my housing without a ton of work on the part of both my health proxy and my case manager. I currently have a special housing voucher for people with MH needs who have experienced a certain threshold of homelessness. In order to keep it there’s a number of stipulations, one of which is that I must continue MH treatment and comply to it. (Which is a reason to be especially picky about who those providers are, as reports that I’m non-compliant can get me in trouble.) Not coming to the number of appointments that are deemed needed by the professional can be seen as non-compliance. If I had a different psychiatrist, refusing to take a medication because I want to try a different one or categorically disagree with the type of medication could be written up as in violation.

Heaven forbid under this proposed plan my mobility issues get to the point where I need to deal with the paperwork to get a proper wheelchair. (Right now I use one only in settings where I’d otherwise need to stand for extended periods of time, and I use an inherited hospital style chair that isn’t really designed for you to wheel yourself around safely.) The combined annual limit on my “high risk” plan for medical supplies and durable medical equipment is only $2500 under the new law. If I were a full time AAC user in addition to the current restrictions and complications to get a decent replacement device, I or my health proxy would have to try and predict if any of my other equipment would need replaced. If I required, as some of the people I’ve met in my peer education and advocacy work do, a more complex system that also needed accessories like those for mounting to a wheelchair, I could be in trouble- some of the more complex devices might even exceed that yearly cap.

Currently, I have to get fairly regular lab work to maintain my health, find appropriate treatments, and monitor those treatments I’ve already settled into. But the new system would limit the amount of lab work I’d be allowed each year- and my health conditions aren’t even on the highly complex end of lab work requirements. Additionally if I had to get more than 4 out patient “surgeries” a year- which include things you might not always think of as such like the colonoscopy and endoscopy I had to have this fall- I’d be in a lot of trouble.

What truly counts as emergency visits to the emergency room? Would my severely dehydrated and unable to call anyone but 911 for help  because I was on a tract phone visit a few years ago count? I probably would have lived a few more days. What about being in so much pain I was delirious but was sent away with antibiotics and an inaccurate diagnosis? Or when I had an abscess that my dentist later said was severe but the ER said was only a cavity, even though I came in screaming and couldn’t wait any longer? And I’m someone who has access to both a primary care provider I trust and can usually get in to in a reasonable amount of time, as well as access to specialists. What if I lived somewhere where my doctor was over booked and couldn’t take short term appointments? What if I didn’t have any place that urgent but non-emergency care could be provided that I could get to? What if I couldn’t get anyplace further than the hospital? If I lived in a county where there was no one to visit but the hospital for certain things? PA, for all that we show off our beautiful capitol, the bridges of Pittsburgh, or the sprawl of Philly, is mostly a rural state. Pennsylvania has more individuals living in rural areas than any other state in the US. From where I live I regularly have a 5+ hour drive to visit Harrisburg, and to see my psychiatrist (who is a specialist in my diagnostic combination) it is about 2 hours. It isn’t always as easy as identifying the right doctor on your own, if you can even do that. Transportation in our state is kind of appalling.

And that doesn’t even factor in the fact that we’ve lived in a culture where the poor are taught that anything BUT going to the ER is a luxury, and in some cases even that is out of reach. Many hospitals will still treat you so that you are “stabilized” even if you can’t afford treatment, either billing you later or making you apply for grants to cover your treatment. (And some of those can remove your treatment options- read your paperwork.) For a while now, the ER has been a treatment hub for the poor, and that doesn’t change by punishing the poor. I can kind of understand limiting ER visits in the long run, but before that we need to enact cultural changes that won’t happen until the poor have an alternative.

MAWD is Medical Assistance for Workers with Disabilities. MAWD lets people with disabilities earn enough money to support themselves, or at least work towards that point, without losing your medical benefits. This is a big deal- if you are on SSI or SSDI there’s a cap on how much money you can earn without losing everything. For some people the only reason they can work is because of the level of medical care and supports that come with being an SSI Medicaid recipient. Trust me, the image of an SSI recipient being lazy is usually a myth. Most of us want to work as we can, even if it’s only a few hours a week and can’t support ourselves with it or in an extremely customized setting, but are terrified that if we work too much we will lose access to supports that we need. And what if we do leave the program and crash, becoming unable to work again? MAWD helps make a return to work possible, and the idea less of a threat. Right now it works as a buy in program- if you are making too much to keep getting SSI/SSDI, you pay 5% of your monthly income and are covered. The new plan, however, removes MAWD and the specialized support in navigation that MAWD has for people with disabilities and lumps you in with others. Additionally, the proposed plan has an income limit of 133% of the poverty level compared to MAWD’s 250%.

All of this is just specific to people like me. If you aren’t in an exempt group, there are premiums, additional income limits, hour/week work requirements (you have to work more than 20 hours a week or else you have to be actively searching for a job), and you can be barred from Medicaid for as much as 9 months at a time for missing a premium payment. As someone who believes that access to medical care is a human right REGARDLESS of if you have a job, do the “right” things, or lose track of your bills, I find it morally reprehensible. But even without those beliefs, even just sticking to the changes for those who are already medicaid eligible, it’s clear that this new plan would devastate the poor in our beautiful state.

So much for “Healthy PA.”

The deadline to submit comments is MONDAY, JANUARY 13th, 2014 (Edit: Has Closed.).

You can submit your comments according to this info from DRNPA:

It is important for the disability community to submit comments on the Draft 1115 Waiver application.  Written comments must be submitted to the Department by January 13, 2014.  Written comments may be emailed to ra-PWHealthyPA1115@pa.gov or mailed to: Department of Public Welfare, Attention: Healthy Pennsylvania Waiver, P.O. Box 2675, Harrisburg, PA 17105-2675.  Persons with a disability who require an auxiliary aid or service may submit comments using the Pennsylvania AT&T Relay Service at 800-654-5984 (TDD users) or 800-654-5988 (voice users).

For further information, please check out DRNPA’s Overview. Bullet points are really effective when sending in your comments, so keep that in mind if you send a comment in.

You might not live in PA, but I encourage you to look at your state’s plan- some of the other plans out there are also questionable, but you might not have heard about them.

Advertisements

I Was One of the Scary Kids

Content note: ableism, stigmatization of Autistics and other PWDs, the Sandy Hook shooting

I didn’t want to write about the shootings at all. I knew a number of people (who I’ll link to throughout this post) and organizations would be posting and writing, working to counter the inevitable stigma fail that would happen. I even was keeping to commenting on the links of people I care about, people who I know and who I want to have these sorts of discussions with. Then, it happened. I’ll leave the critiques of the post gawker promoted to others, but I feel obligated to make a comment about some of the assumptions it is based on and promotes.

That comment starts with a declaration: I was one of those scary kids.

It’s not some great proud thing to say. It’s a truth, a truth that when I reveal it makes people behave differently. Admitting that you were a “scary kid” means that people heighten their bar of behavior for you even more than a simple disability disclosure does. It makes even normal responses to threatening situations take on a sinister light to others. Telling someone to back off goes from angry to a threat. Pushing away someone who feels entitled to your body becomes violence rather than defense from it.

It makes people suspicious. It makes people question your ability to accurately report crime, abuse, or health concerns. When you are a former scary kid and let people know, they don’t want to hire you in meaningful positions — or sometimes at all — they don’t want you living in their buildings, and they don’t want you learning at their schools. Your opportunities are curtailed. You are told all the things you will never do.

All of these are true of having certain disabilities to begin with, but when you add in a confession of having been one of those scary kids it is heightened.

I was a scary kid. It makes me sad, but only because I actually don’t like scaring people, though I often can’t tell.

Before the age of 14, I was the sort of child that service providers recommend parents to place in a residential setting — that is, juvenile mental health institutions. Parents were — and are sometimes still — encouraged to relinquish them to the state, who would willingly pay for this kind of care. My mother fought it, and demanded community based services and the training my providers needed to provide it. But she was pressured the entire time, and when I was reviewing her records last year I found boxes of pamphlets and packets that she was given to encourage my placement in those settings.

I also found her private journals about our lives at that time. These were journals she might only ever show excerpts from to a therapist, but were meant to be private accounts. It was scary for her. I cried when I read them, because it was horrible to realize that I had made my mother feel so horrible and hadn’t known. I had not realized that anyone would have interpreted my behavior in a truly scary way, that they wouldn’t see the same causes that I was reacting to.  But she was terrified in those pages — the ones she never meant for anyone but herself to read. Even in her advocacy work, she wouldn’t say that certain events were from my life, just that they had happened to “a young person” she knows. Even the things that she was terrified about.

In the pages of that private journal, she talks about the times I would charge at or by her. To me, I was desperately trying to escape a scary situation for me. To her, it was a charging at. I would throw things, and at the time didn’t have the impulse control to find soft things in a safe space. I never aimed at people, but to her I just had really bad aim. I screamed, and I said things that made little sense — I was scared and angry and frustrated that I couldn’t articulate it. These were seen as threats. When I was put in a scary situation, I would flail and push to try to get out of it — and these were seen as violence. When she left on trips, I was taken with her because she was worried what would happen if I was left with a babysitter.

Most of the episodes she chronicled for her private memory keeping were ones that she never saw the cause for. So many start with, “I came home from work, and Savannah…” It took me until into my twenties to be able to articulate what happened before — that her second husband had provoked responses and behaviors. How he would tell me I was fat, lazy, and that I would never be competent. How he would threaten me with sending me away.  How he did any one of a number of things that would set off my behaviors. There’s no coincidence that the behaviors dramatically decreased a year after he left- at 14, I even was off medication.

Not all the behaviors were triggered by him — some of them were reactions that I didn’t know how to handle internally. Some of them were because of how my internal state from incorrect prescriptions made things harder to deal with. Some of them were from being unable to handle fear, frustration, and change internally. Change was a big trigger for me, and set off the start of my fear responses. I just didn’t have the skills to handle those states. I would go on to develop them, but I didn’t have them yet.

For me, those times were scary because of the outside world, because of confusion at people’s responses, and because of people using my being a “scary kid” as a weapon. To her, I was scary and she didn’t know and couldn’t predict fully why. She understands it now — time, observation of me growing up and learning, my finally being able to properly articulate what was happening for me in those times.

My mother doesn’t regret keeping it private, between her and her private journal or her therapist. Today she was at  a consumer and family advisory for our behavioral health managed care organization (BHMCO). They read that gawker article, and my mother was appalled. She has scary stories about me, but the idea of sharing them in a way that associated them publicly with me was a horrifying violation of privacy and good sense to her. She was struck by the negativity of the piece, of the author. And she noticed how it relies on and perpetuates stigma, and jumps to conclusions.

Having been one of those scary kids is scary.

It’s not scary in and of itself. What made it scary to have been one is what people assume based on it — and what they assume when you don’t disclose.

I’ve had people try to justify things from the JRC’s electric shocks to denying someone an integrated learning environment, to defend seclusion/restraint to “therapy” induced injuries and even deaths using my fellow former scary kids as their reasons. The kids with “significant disabilities.” The ways that other people saw my behaviors — things I didn’t know at the time- are the same things I hear from people trying to justify violence and isolation towards kids and adults with disabilities.

They also project forward to futures that are inaccurate, contributing to the problems that us scary kids face when we grow up. They say we will become criminals, or will commit violent crime, that we will be a danger to society. That we are “sleeper agents” of mass murder. They say that of course people who have had such and such a diagnosis, especially when you are also a scary kid, will do certain things or will never do other things. That we couldn’t successfully ever live on our own, that we’ll never graduate, never hold a job for long, will never have successful, healthy relationships. That we are doomed. And while not all scary kids have mental health disabilities (and not all kids with MHDs are scary kids), those who have developmental disorders with the right behaviors are lumped in.

When I- and others who are autistic, have Mental Health Disabilities, or both — talk back with truth, we are denied. When we talk about how having xyz diagnosis doesn’t mean we will do stuff, when we point out that we aren’t mass murderers, we are shut down. When we talk about how yes, mental health reform is important but that it shouldn’t come out of stigma, coercion  and false equivalence, we are told that we are calling other scary kids lost causes. When we point out that we don’t have enough information, we are dismissed. When we disclose, we are called too close to the issue. Even when our mothers join us.

In reality, only 5% — or 1 in 20 — of those in jail for violent offenses entered jail with a diagnosable condition. The other 95% did not present as diagnosable on entry. Most of those with diagnosable conditions are there on non-violent and drug offenses, including a number of which are a symptom of a lack of supports rather than their conditions themselves. Some estimates place the rate of Mental Illness at 50% of the inmate population, and yet only a very small percentage are there for violent crimes.

In reality, these impressions of us make us targets of crimes. People with “Serious Mental Illnesses” are more than twice as likely to be a victim of a violent crime. We are targeted for sexual assault, particularly if we are or are seen as women. We are likely to feel stuck in abusive relationships, or to have people use our diagnostic status as justification for abuse. And that is just the violent crimes  — we are astronomically more likely to be victims of personal theft, and 4 times more likely to be victims of property theft.

In reality, the stigma and stereotypes that people are promoting mean discrimination in employment, in housing, even in healthcare and courts. It means having people turning their backs on friendships and relationships when they find out, even if you are relatively stable now, even if you have the supports that make it irrelevant. It means people leaving if you have a setback that they would stand by someone without your diagnostic history for.

It is facing stigma, or hiding from it, sometimes at great cost. I certainly made a lot of poor choices based on trying to hide having been a scary kid, even when I wasn’t hiding having Mental Health Disabilities.

Being a Scary Kid isn’t certain doom.

They told my mother and I that I would never graduate high school and I’d never get into college. Some speculated I’d need to live in a group home or a more intense, and that I’d never live on my own. Some thought I’d get sucked into crime based on my psych history alone. Some said I’d off myself before I turned 18, 21, or 25.

I graduated high school — my siblings, the non-scary kids, dropped out and either have or are working on their GEDs. I even aced a number of classes, and other than my last semester (which was sucked up in depression) was pretty much tops. I’ve had some unsuccessful attempts to live on my own in the past, but those had to do with daily living skills more than being scary. Right now I’m living relatively successfully on my own, even if it did follow a period of homelessness. I did get into college easily, even if I had to drop out for a mix of financial and ADL deficit reasons. I’ve never been in jail.

I celebrated my 25th birthday in August. I am alive, and though my health isn’t the best I am surviving and working towards my own personal wellness.

I have little in common with the things they assumed. My scary is now just the normal stigma that any of us, autistic, with mental health disabilities, or both, face. I do struggle, but not in the ways that were assumed when I was a scary kid.

Being a scary kid is just that — having behaviors that scare people when you are a kid. It doesn’t mean you have a particular diagnosis or neurotype. It isn’t predictive of being a mass murderer or anything else- heck, a lot of the people who are mass murderers, diagnosed with something or not, didn’t reach the heights of being “scary kids” when they were younger. Not scary the way I was, or others were.

When I point out to try not to link scary kids to criminal violence, particularly of the mass murder sort, I’m not saying that services and supports aren’t needed. I’m saying that they would be even if we never had a massive violent event. I’m saying none of us are doomed, if only we combat stigma and prejudice at every chance, be it ableism, racism, or classism that we are talking about.

When I tell you no, I mean that none of us are lost causes.

Healthcare Reform, pt 1: A Personal Story.

This week, I’m going to be posting about Health care Reform. Later in the week*, I’ll post some other sorts of information- including some info from various MSM resources, some data about some of the misinformation out there, etc.

Today’s post isn’t about the financial, political, or practical points that matter to politicians though. Today’s post is about what it means to us as human beings, and about the personal stories that don’t get factored in when it comes time for a politician to vote. (Well. Sometimes they do. Sometimes.)

My opinion, to be up front, is pro-Health care Reform, and pro-Public Option. I think it’s the only ethically sound thing to do. But I know that while I’m not the only one that thinks so, there are plenty of people who think differently- and are equally or more so passionate about that opinion.

They have their stories about health care and Insurance. I, on the other hand, have mine. It’s a bit long, and very embarrassing at parts, but I think it’s important to share these things faults and all. I encourage you to share your experiences in the comments, or to link me to your experiences, whatever your opinion is.

My Story

When I lost my insurance- or rather, when the insurance company realized they didn’t have to cover me anymore- was when I was pursuing psych treatment. To be blunt, I was having suicidal Ideations but was too depressed to actually go through with any of them, sure that if I tried I would screw it up. My General Practitioner heard this and asked if I would go to the hospital if he referred me. After some debate, I agreed.

In the ER (which is where we had to go for psych intake) we sat in the little room for hours. The time had little to do with doubts about my need, and everything to do with insurance. Up until that point, I had been under my biological father’s insurance as per what had been worked out in the custody agreement years before. I had been going to school up until 10 months before, and so was at that point still covered- or so we thought.

My father’s insurance wouldn’t accept the local hospital’s psych ward, despite having accepted it two years previously. They wanted me at first to go to C___ Psych, which I refused on the basis of having received poor and inappropriate treatment there in the past and because my sister had as well. Not to mention the untold number of other people who have chimed in that they received poor treatment there as well (That’s a story for another time).

Next they wanted me to go to Mercer, over an hour away- and I would have to be transported by Ambulance, which they would not cover, and I wouldn’t be allowed to have my mother with me to help me explain to strangers what was going on when words failed me. I was uncomfortable with this, and someone started the paperwork and asking some questions about transport. I was fairly insistent that I wanted the ward in the local hospital as that had been the arrangement I had made with my GP, but my mother spent a while trying to get me adjusted in case they really did have to send me to Mercer- an hour away.

After a while an attendant came in. She was very nice, but the news she had to tell us was not. It seems that after having insisted on a different site for treatment, the insurance company had suddenly realized that I was outside of the time span they needed to cover me under as I had not attended classes in the last 6 (or was it 9? I get them confused a lot when it’s an image in my head- which it usually is if it’s from paper work!) months.

Mid intake, I had gone through fighting with an insurance company over the site of treatment to not having insurance at all. I went into the ward associated with the local hospital not knowing how I was going to be able to pay for the treatment I was receiving, and not wanting to sign over Power of Attorney to the hospital in order to receive hospital funding.

(PoA was a big issue at the time for me- my step-grandmother had lost everything fairly recently due to her PoA of her would-be common-law husband being voided when she went into an involuntary commitment after seeking medical treatment. Again, a story for another time, and one that raises a lot of concerns about Elder Care and Mental Health.)

Honestly, My preoccupation with how to deal with it influenced my treatment a lot- I had something to focus on, and was demanding my rights, which means I was no longer suicidal. The doctor ignored what my condition had been on intake because by he time he saw me the next day, I was anxious about how my treatment would be managed instead of wanting to die. While it’s good that I didn’t want to die anymore, it means that my treatment wasn’t for what I went in there for, and the underlying issues were not dealt with.

After I got out, it wasn’t long before I was getting phone calls and letters about how I needed a way to pay for my treatment. At one point I shut down completely during a phone call with the financial people and started sobbing and shrieking. (Embarrassing. Memorable, but Embarrassing.) My mother grabbed the phone and told the woman on the other end that I was obviously still mentally ill and not in a position to take care of that right then.

I’ve also been reluctant to seek treatment due to this experience- even for medical issues rather than psych ones. It took me until I had a large ulcer on my skin from a bacterial infection this spring to go in, and it ended up being pretty horrible. I now have to be careful about my health because of that situation.

I still am trying to pay this off, and while I generally don’t do the sobbing any more, I have a script I have to use to get through those phone calls. Some days I won’t pick up the phone if the number doesn’t have a name associated with it in my cell because I don’t have answers for them. I’ve put money towards it when I’ve had money, but I lost my job in February. I charged off my bank account by letting it continue paying towards it and another debt rather than saving for food. Anxiety about not knowing how to pay off not dying is a near daily occurrence for me.

Thankfully, I have a happy ending of sorts in that I qualify for health care since I’m unemployed and in the process of applying for disability. It won’t take care of my past debts, but it does mean I can now get medical care, and in fact am obligated to do so because of the Disability status. I don’t know what will happen if my Disability case gets denied- I’ll probably plunge back into the world of being unable to go to the doctor.

For many Americans, though, this isn’t the case. Especially those with disabilities- especially those who wish to work and are able to. A woman on an E-mail list shared this thought, and I think it sums up the current system quite well:

The current system demands that either people be very highly functional so they can gain employment somewhere that provides medical insurance that covers pre-existing conditions, or live in poverty, in order to get medical coverage.

There is no middle ground.**

*I’m using the definition of week creatively to mean “the next 7 days” rather than “The set of time observed in western culture as Sunday through Saturday.”
** Has been edited to remove personal info and structure. To the woman that said this: let me know if you’d like me to credit you openly.