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.

News and Numbers

First, some Personal News: I’m the new Assistant Director for AWA-Pa Alongside the wonderful AspieTeach, our Director for PA. Please check out the site and let me or her know If you have news or resources for women on spectrum in PA!

Also in the Positive, The Rethinking Autism “Autistics Speak” video (My post is here) Is getting a lot of response. My biological father and I talked today, And he’s been showing it to people at work, friends, and Even his Therapist. They even used it as a way to prompt discussion is session.

In a broader sense, Rethinking Autism has been getting some community Media Exposire. AWA Radio had Dana on, and she’s scheduled for Mad as A Hatter (air date might vary, V’s been ill). If you have a media outlit, please consider asking Dana on! I’ve had several people tell me they’d love to see Rethinking Autism’s latest video have a broader Audience, and I know Dana would love that as well! After all, our message is meant for everyone, not just the Autistic community.

And now, Numbers games:

a couple of articles are out about statistics in the Autism Community. One news Study claims we are at 1 in 91 US kids on the spectrum. This, of course, is including the entire spectrum. What is interesting about these new studies is that previously, we had claimed to have a lower prevalence (1 in 150) than other countries (UK claims 1 in 100).

Another Study Claims the numbers are at 1 in 110 and which has been covered by Left Brain/Right Brain. It should be noted that this was based on parent reports of behavior received via Phone surveys- not the most scientific way of collecting data. It’s imprecise, but it certainly gives us a lot of leads for future studies that will hopefully involve more reliable data collection. Also, some of the parents claimed that their children are no longer on spectrum, which raises further questions. I reccomend the above linked article for a good analysis of this study. (USA Today also covered this story.)

Speaking of all these numbers, left Brain/Right Brain have a good question- Do We Need an Epidemic for People to Take Autism Seriously? This post is a well written and detailed look at the numbers and epidemic centered tactics used by various groups, and comes away with an answer- No, and Epidemic language might even defeat the purpose. Definitely recommend this one.

ASA York to Take Down Billboards

Earlier today, ASAN sent ASA York the following letter:

To the Autism Society of York, Pennsylvania:

The York, PA Autism Society has a well established history of working to advance understanding and support for families in the York and Adams county area. Your involvement with the HOPE playground, your extensive Spanish language resource list and your other activities set positive examples for other organizations throughout Pennsylvania. It is with this history of positive efforts in mind that we are forced to express our grave concern after having been contacted by a number of Autistic adults and family members about your current billboard campaign depicting Autistic children as kidnapping victims.

For decades, autism has been regrettably associated with fear and stigma. In the early years of the autism community, Bruno Bettelheim’s characterization of mothers of Autistic children as at fault for their child’s neurology ruined lives. In later decades, the same fear, stigma and constant search for blame persist even as science has discredited that particular causation theory. As we, Autistic adults and youth ourselves, attempt to assert our voices in the national conversation about us, we find ourselves characterized by those who often speak on our behalf as though we are burdens on society and individuals devoid of the full measure of personhood and humanity. Such mischaracterization threatens our efforts to be included in our homes, our schools, our communities and our collective society. By making the autism message one of fear, stigma and hostage-taking rather than one of civil rights, inclusion and support for all, our desire to be recognized as full and equal citizens in our communities is hurt.

The use of stolen-child imagery is one of many common motifs in autism awareness advertising. Unfortunately, it serves to send a message that Autistic people are less than fully present in our own bodies and are less than fully human. Such characterizations are frequently utilized to justify violence, prejudice and segregation against Autistic adults and children. The autism and Autistic communities deserve better than this.

It is due to these concerns that we respectfully request that the “Kidnapped” bill boards be taken down. We stand ready to work with you, the Autistic community of Pennsylvania, and any other interested parties to formulate an ethical replacement that sends a message of hope and support to Autistic people and our families rather than one of fear and dehumanization. Whatever awareness these billboards may bring, it is more than outweighed by the stigma and ignorance they add to a public conversation about autism that is already too full of such things. We believe that, working together, a better solution can be found.

Due to the public impact- locally and throughout Pennsylvania – we request a response no later than three business days (Thursday, August 20th). I can be contacted at aneeman@autisticadvocacy.org and by phone at 732.763.5530. Our Pennsylvania director can be reached at srobertson@autisticadvocacy.org. We request that you include him in your response.

Sincerely,

Ari Ne’eman
President
Autistic Self-Advocacy Network

Not long after, ASA York replied.

Dear Friends in the Autism Community,

Regretfully it has been brought to the attention of the Autism Society of America – York Chapter – that our recent billboard campaign has caused undesirable confusion within the community. The intention of the billboard campaign was aimed at generating awareness to the general public and was in no way created to cause a malicious stir within the community. As a parent of a severely affected nine year old with Autism I can truly understand your passion regarding advocacy and respect for our children.

We thank you for your thoughts and concerns. I apologize for the misunderstanding and want you to know we will promptly remove the billboard posting.

Respectfully yours,
Amy Wallace
President ASA York

Short version: ASA York will be removing the billboards, thanks to the efforts of a number of people e-mailing and calling them this weekend. We have been able to join together as a community to voice our concern, and were heard. In a single weekend. How cool is that?

If you’d like to thank Amy Wallace for her prompt response that answered our concerns, her e-mail is amywallace3@gmail.com . Considering some of the local community projects that ASA York has participated in, it looks like we could see more community involvement to come.

York, PA ASA’s Billboard Blunder

Some of you might remember the Ransom Note Campaign that NYU Child Study Center ran briefly in December of 2007. Briefly because the disability community, 22 Organizations including ASAN, objected to conditions ranging from Autism to ADHD to Depression being depicted as kidnapping or possessing children. They were swiftly removed.

And it got a good amount of publicity, both within the disability community and in the MSM. A victory won, and after such coverage It should be obvious that this sort of analogy is inappropriate at best, damaging at worse.

I’d like you to meet York county, PA’s ASA chapter. Or rather, thanks to Club 166’s post,(and subsequent letter), their most recent billboard:

want a clearer image? well, it’s up on their website, too, with the oh-so-descriptive note of “Several new billboards can be seen around York….”:

Hm. Okay, so it’s a parent quote, but why would this seem like a good idea in light of recent events? Even if this is something the parent said out of desperation at a support group meeting, why would it be okay to plaster on a billboard where everyone could see- including the children whose lives it is speaking so derisively about? (I’m leaving alone the larger question of why any parent dealing with ANY child with a disability feels so alienated as to feel this desperate for now.)

Right now, I’m working with ASAN to gather more information and organize a PA reaction to this. We are hoping to get them to take these billboards down- and hopefully to understand why they weren’t appropriate in the first place.

Right now, we are in the first part of this process- ASAN has sent a letter to ASA about their York chapter and we’re working on one to ASA-York to be sent in the next few hours.

If you, as an individual or as part of an organization, would like to contact ASA York to let them know how you feel about the bill board, here’s their contact info:

e-mail: pa-york@autismsocietyofamerica.org
e-mail 2: info@autismyork.org
Phone Number: 717-801-1272

Please remember to be polite when contacting them. If you choose to call, make sure it’s in normal business hours EST (New York Time) and be polite- no foul language, etc. Just a straight forward statement of complaint, short and sweet.

I’ll keep you updated if I discover any more information, and on any further actions we attempt.

EDIT: Since posting this entry, the announcement on the launch of the billboards has been purged from the ASA-York site. If I obtain further info, I will post it tomorrow in a new entry.