URGENT ACTION Needed to Protect Medicaid Covered Services for PWDs!

Dear Advocates:

Please take a moment to read this message and act quickly to help prevent people with disabilities from potentially losing access to the long-term services and supports they need to live and work in their communities. It will only take a few minutes of your time. We must act no later than Monday, October 31 by 4:00 pm.

A proposed rule for the Affordable Care Act (the federal health insurance reform law), if enacted, could cause some people with disabilities to lose eligibility for some services that enable them to live and work in the community and not live in institutions. Examples of services that could be impacted for specific individuals, based on the new eligibility rules, include those provided through Medicaid Home and Community Based Services Waivers such as attendant services and supported employment.

The proposed rule could result in many people with disabilities being enrolled in a new Medicaid group – the Adult Group – starting in 2014, because of the new eligibility rules. The new group provides more limited coverage – called “Essential Benefits” - than Medicaid groups that now serve many people with disabilities. The rules could prevent many people from enrolling in other Medicaid groups, including the Medicaid Buy-In (the Employed Individuals with Disabilities (EID) Program in Maryland) and Medicaid Home and Community Based Services (1915c) waivers. The proposed rule needs to be changed to ensure that individuals with disabilities don’t lose services they currently receive, especially those enrolled in Medicaid waivers. For example, many unmarried individuals with taxable income under $1,252/month would be enrolled in the Adult Group and not receive some long-term services and supports.

The federal Centers for Medicare and Medicaid Services (CMS) is accepting public comment on the rule. If CMS receives enough comments suggesting a rule change, the agency MAY modify the rule. You can submit comments by using the following link: http://www.regulations.gov/#!submitComment;D=CMS-2011-0139-0002. Simply enter your name, agency (if any) and comments. Please feel free to paste the following comment, or to submit your own:

“People with disabilities who would be eligible for the Adult Group need to keep access to long-term services and supports in the community that the Adult Group is not likely to provide. Please ensure that people with disabilities can retain eligibility for services they now receive through other Medicaid groups, including Home and Community Based Services Waivers and Medicaid Buy-In Programs. A revised rule should ensure that (1) people are asked whether they have disabilities and need long-term services and supports when they apply for Medicaid and (2) people with disabilities either be exempt from the Adult Group if they need long-term services and supports they can get through other Medicaid groups, or get access to additional long-term services if they enroll in the Adult Group and have or acquire disabilities that require these services. People with disabilities who are eligible for the Adult Group, but not for other Medicaid groups, should still be able to enroll in the Adult Group.”

You Know You Have CP When...

So I was getting a massage this morning, which is a regular thing now that I've found steady (part-time) employment. Something I'm insecure about, only because I feel like most people don't understand that I've lived with a chronic pain condition my whole life, and if I mention it I feel like they'll delegate me to the category of "spoiled," which is not what this is about.

But that's neither here nor there. I'm probably in the minority of massage goers in that I can't imagine myself ever falling asleep. I find myself too interesting, I guess you could say. I like to pay attention to what hurts how much. It's useful to know. If a problem area hasn't been bothering me and it hurts less then usual, it's nice confirmation. If it hurts just as much, I wonder what's going on. I also think I'm in the minority of massage goers in that even as a kid I paid attention to orthopedists and physical therapists, and I took anatomy and physiology both senior year of high school and sophomore year of college, so I have a decent understanding of what muscles are where. I generally know what she's working on, even if I don't remember the names of 100% of the muscles.

Often, like this morning, when something is particularly painful, I'll go "What's that?" I couldn't quite tell if she was working on my lower back or the top of my pelvis, which is kind of the same thing, but it was something she hadn't worked on before. I could tell she was right at the insertion point of whatever it was.

To get to the punch line of this story, she says "your glutes and your hip rotators." And the only thing I could think of in my head was "If this hurts that much, I've gotta have a firm ass. At least I won't be like 80 years old and have a saggy butt. Score one for spasticity!"

LOL...

I Take Responsibility (a Repost)

Originally published Feb 2010, I hope the links still work. Something I found today and really needed to be reminded of.

Thanks Beth for pointing me to two GREAT articles recently, one of which I will just mention briefly. Debate Over Cognitive, Traditional Mental Health Therapy from the LA Times touches on whether or not therapists should be designing treatment plans within the context of the medical model. But it is the other article, or rather part of it, that is really the focus of this post. The Americanization of Mental Illness from the New York Times also focuses on the medical model, but more extensively.

I'm not going to sum up the entire article as it is super long (totally worth reading the whole thing though) but I am going to pull out two parts. The discussion on the stigma of viewing mental "illness" within the framework of the medical model ("brain-disease"), as "... an illness like any other" (quote from page 3), something purely with a biochemical origin, versus as something originating from situational triggers ("psycho-social") is primarily located on page four. I'm not going to comment on this section anymore except to say GO READ THIS NOW (I'll wait) because I feel like I'd be repeating myself ad nauseam -- especially lately -- as well as because the opinion is substantiated by scientific studies and isn't just my verbal diarrhea.

There is this one quote from page 3 though that really stuck with me and that I will comment on fully.

"Mental illnesses, it was suggested, should be treated like 'brain diseases' over which the patient has little choice or responsibility." emphasis mine

Little choice or responsibility. Wha? Huh? Seriously? I didn't have little choice over whether or not to be bipolar, I had NO choice. It's not like I woke up one day and said "Gee I think I want to have a major mood disorder." I didn't know until high school that my dad is bipolar and this runs rampant in that side of my family. I just drew the short genetic straw so to speak.

[image description: tiles made by elementary school students in CA (found by google images) surround and illustrate the word Responsibility]

However, I DO have full responsibility over what I do with this information.

I AM responsible for the choices I make, although I often do not practice what I preach.

I AM responsible for the decision to take my medication or not, to go to my support group / therapy / medication appointments or not, to go to the gym or not.

I am NOT responsible for the fact that I will have repeated bouts of depression for the rest of my life.

I am NOT responsible for my panic attacks, especially when I have the ones that start in my sleep.

But, I AM responsible for how I decide to handle this, how / when / if I get control over the episode or if I decide to relinquish my power to my states indefinitely.

Little responsibility? How is that little responsibility? That is BIG responsibility.

I Made a Difference (A Disability Awareness Month Post)

Yesterday afternoon I was somehow drawn to point my web browser here. I don't know why I would do something so torturous to myself but I did. If you go way down on the page it says

[the powerpoint slide, right, says "Disability & The Human Service Worker October 24th 2007"

The department collaborates with community agencies to sponsor workshops and professional and family education. Annual events include a Disability Awareness Workshop [emphasis mine] a Supervisor Training Workshop, and a workshop in partnership with The Leukemia and Lymphoma Society on relevant issues for families living with childhood cancer.

So of course I was drawn to click on the link below that, which leads to a page that has a whole blurb on the workshop:

Disability Awareness Workshop

This workshop is held each October [for national disability awareness month] and is designed to raise student awareness and understanding of individuals with disabilities. In addition, participants are informed about available resources and potential careers. In 2010, over 180 undergraduate students, faculty and community professionals attended. The 2011 Workshop will be held on Wednesday, October 26. This year's featured speaker is Alison Malmon, founder and executive director of Active Minds. This nonprofit organization develops and supports student-run chapters at colleges and universities in order to educate students and raise awareness of mental-health issues.

If you click on the tags "independent study" and "workshop planning" below, you'll note that this workshop was my baby. I initiated it a week before Thanksgiving 2006. It took until March until I found out I was approved to do it. I waited four long agonizing months, and then spent 7 more agonizing months planning it. It was arguably the most difficult thing I've ever done in my life. I spent most of those 7 months running around like a chicken with its head cut off. But it was worth it. It was phenomenal.

[The 2007 student panel. Please don't ask me why there are no men there. ARGH!]

This is something I wanted to work and be so successful that it would continue, and clearly it has. On the feedback sheets I got comments such as:

"I feel this seminar has changes my outlook on my field in family studies"

"it is critical that the public be made more aware of workshops like this one. I would suggest that professionals spread the word in some way perhaps and evening at a religious institution (church, synagogue, etc.), a fraternal organizations, etc."

"very nice idea! I really enjoyed myself! Even if you are not going to be working with people with disabilities it is beneficial to be informed about society and life"

Looking at MY WORKSHOP (for it will always be my workshop) placed so prominently on the department's website makes me feel good, of course, but it also makes me feel horrible. It makes me feel horrible because I have done nothing with my life since then. My life is one giant pit of nothingness. A person who can change the world like that, that person should...

I stopped myself from finishing that sentence. It won'tever do me any good to finish it. Instead of dwelling on what I should have accomplished since then, I thought about what I did accomplish. I singlehandedly, just by getting mad one day (that post gives a good breakdown the workshop) and deciding to fill a hole in the instruction of many students who will go on to become professionals working with disabled individuals, changed the lives of thousands of people.

2011 will be the 5th annual (!!!!!!!) Disability & The Human Service Worker workshop, and I imagine by the end of this month about 700 students and professionals will have attended the 3hr workshop at least once. If it still does what it's supposed to, if the workshop still brings a lifespan multidimensional view to disability, if it still focuses on peers in a way that a clear connection is made between disability and the audience's (majority 18-23 year olds) life; if people still learn that disability is not a tragedy, that it is many things, least of which is a diagnosis; if people still learn to look at the individual first and what that individual can offer, instead of the narrow view of disability many had before, imagine what kind of impact that can have.

[right, a crowd shot of the 2007 workshop]

Whether or not you chose to work in a clear cut disability related job, disability is everywhere. Imagine just how many clients each of those individuals will come in contact with over the 40 years they will be working, and how differently they will interact with those clients and their families. The positive impact of a three hour workshop won't last for all 700 people, I'm not delusional (It clearly didn't make much or any of an impact for some that were already professionals [and that's just one example of their horribleness, check out some more]) but even if it has made a lasting impact for just 100 people, look at what an impact I made on the world. Look at what an impact just 1 person can make on the world.

When I look back at myself at that time I do so with a large degree of detachment. I don't see me at all (although clearly I'm the one in the pony tail in that second picture), and I can't figure out what being possessed me. I don't see myself as someone who can execute small things, like hygiene and basic cleaning. Forget about changing the lives of thousands. Who me? NAH! You're delusional. Not me! But clearly I did -- it's right there on the website.

And if I did it once, I can do it again. Even if I am a few years rusty. It's not about what a person should have done, it's about what a person can do. And clearly I can do. Even though most of the time I think I can't. I need to remember what I did, and stop focusing on all I didn't.

"One person can make a difference. And everyone should try." ~JFK