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.

AASPIRE, the Healthcare Toolkit, and Why You Should Participate.

Hey everyone, I wanted to share about the AASPIRE Healthcare Tool Kit. This will be a pretty targeted post, but I think it’s pretty important.

AASPIRE is the Academic Autistic Spectrum Partnership In Research and Education, and they use Community Based Participatory Research (CBPR or PAR) to bring Autistics and academics together for research benefiting Autistic adults. This means that they believe that the Autistic Community needs to be equal partners to the research about them with the academics. Additionally they focus on quality of life issues for Autistic adults, and prioritize the concerns of the Autistic community in selecting what research to do and how to do it. Basically, they are working on a model that should be standard but sadly isn’t when it comes to research about us.

Over the past couple of years AASPIRE has been looking at healthcare access for Autistic adults. The first study that they did looked at our healthcare experiences, comparing and contrasting them to the results of not only non-disabled people but also allistics (non-autistics) with disabilities. As some of you might expect, the results were distressing- Autistics regularly have worse experiences and access to care, including preventative care, and more Emergency visits than the other populations surveyed.  Based on this information AASPIRE researchers publish a paper called “Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership” in the Journal of General Internal Medicine. There was also a follow up with 30 Autistic adults for some more in depth questions about access to care, accommodations, and other details. They have a page on their site with more details about this and links to several formats of the above mentioned paper.

From there, AASPIRE started on developing a toolkit around healthcare for Autistic adults and our supporters to use. This study is currently still running in phase 3- more on that in a minute- but the goal is to develop a toolkit that will help us get better healthcare- have a better understanding of our own care, have more successful visits, and better access to care. Part of this involved generating a customized report that they or you could send to your General Practitioner/Primary Care Provider to help them understand what is needed to make sure you are getting the healthcare that all of us deserve. It ranges from access information to information on the sort of support you need to follow up on your aftercare.

As you might guess from my interest, I’ve participated in these studies. I love working with researchers who share my ideas about what research about us should look like, and quite frankly I believe that this particular line of research can help a lot of people. With the Healthcare Toolkit, though, it also provided me with a tool that may care team is actually using. When I gave copies of my report to my MH case manager (who used to be a supports coordinator in the ID/DD system I believe she said), she told me that she wished a lot of her clients had or had had things like it. I had her forward my report to all of my specialists which as I have plenty of health issues is a good number of doctors, some of whom I see a lot less often than others. So far, it’s gone ok.

I’d like to encourage people to participate- your feedback helps them figure out how tools like this could be better, and it provides you with a decent report about what sort of supports and accommodations you need to get the most out of your healthcare visits. Participating can have an impact on your healthcare visits depending on your doctors and who you send it to. It can also help the people who support you in your healthcare, if you need that sort of support, support you. I have my mother support me at a lot of the more complicated healthcare visits I have, and to my first time at a new doctor, so I think the fact that I need that kind of support on there (I think- I did it in late October) but that I am still capable of understanding my care helped. For example my case manager now asks if I need her to come with me any time she schedules an appointment for a new doctor. At my new PT’s they understood right away, either because of a copy of the report OR because of the information that my case manager conveyed from it.

If you are interested in participating, I encourage you to check out the information they have available. You can participate if you are either an Autistic Adult of some sort or if you are a major support person for an Autistic Adult. Make sure you fill out the survey after- you DON’T have to actually visit your doctor to take the survey afterwards. I thought so at first but I was informed by one of the lovely researchers that I didn’t need to have filled it out to take it. In return for your participating, you can get either a $30 Amazon gift card or check after you fill out the above mentioned survey.  I really appreciate that compensation even though I’m someone who participates in these things both because I believe in the goals of this particular research and because participating in research- be it for a scientific study or consumer ones- is a hobby of mine. I know others of you don’t share my hobbies, but between the compensation and the fact that you are getting a free tool to use about your healthcare is, I think, something that could appeal to people who don’t have the same hobbies.

I really believe in this project and I really want it to succeed, and the more people who participate the more significant the information that they get will be.