It's Beginning to Look A Lot Like Fun*Run Time

It's ALREADY that time of year again: The ADAPT Fun*Run for Disability Rights is April 22nd 2012. Maryland's fundraising goal is $8,000 this year. Yes, that's right, $8,000

Donate $1! Donate $10! Donate $100! Donate $1,000! JUST DONATE so we can FREE OUR PEOPLE! I thank you very much for your support!

Tuesday, March 3, 2009

What About ME!?!?!

[image description: b/w clipart of a girl in a manual chair w/her hand raised high]

I feel rather odd not having blogged for a whole entire week. I think I ODed on the whole blogging thing in Jan/Feb and I need a break, even though I wrote down a long list of things I want to blog about (this one not included). Anyway, the post now...

Today I went to the CMS MFP conference (Center for Medicare/caid Services Money Follows the Person) which was down in Harbor East (Baltimore). For my senior seminar in family studies class we have to go to 2 conferences, so this is #1. #2 is tomorrow evening. The Leukemia & Lymphoma Society's bright horizons conference is held in the union every spring. I chose the CMS conference because I have a very good friend who was presenting today who wanted as many Sunshine Folk there as possible, and my other friend and fellow CDRC member works for CMS and was in charge of the whole thing.

The day started by having to get up 2hrs before usual, earlier then I remember getting up in a long time, because the conference was downtown and started at 9am. It was still dark out when I had to get up *whine* and very cold in my room. It was extremely hard to get out from under the covers. So I missed my paratransit ride :-( I can't take a cab into Baltimore anymore because the state cut how far I can get on the discounted rate, and, well, I lost the card again the other day anyway... So in the freezing cold 13 degrees fahrenheit I raced over to the library to use google maps to figure out my route via bus, which is totally free w/a paratransit ID. The route seemed easy enough, but I got totally lost. Anyone who knows Baltimore, I somehow randomly ended up at the inner harbor after I got off the bus, which was good being that I was looking for E Pratt st, but I guessed wrong, turned the wrong way, and ended up at the convention center (off of W Pratt st, totally missed the fact I had crossed over) when the hotel is in Harbor East. I was an icicle by the time I texted someone, turned myself around, and miraculously found my way there. To top it all off, my chair battery was blinking angerly at me on 1 bar this whole time and I was petrified it was going to die. Thankfully it didn't. So I was late, yes, but the requirement for class is only to be there for a minimum of 3hrs.

*sigh* It makes me feel better to get that out.

I went to 3 sessions today. I can't even remember what my sessions were technically on. All the names sounded very interesting except what they all were really about was needs assessing, dressed up in different contexts. Employment, person centered planning, and community organizing. I've done some theoretical needs assessments, in fact I turned one in yesterday for sr sem that everyone in the class has to answer and give back to me, and frankly I've had enough of needs assessments over the years. I've had to do them in too many classes. And right after I just did one, gag me. Even so, I was able to pick up a little tidbit in each session and really did learn something. In fact, I had had a return paratransit ride for 2pm that I canceled during lunch so I could stay for the 2 afternoon sessions.

I've totally gone off from what this post was supposed to be about: the first session. "What about ME!?!?!" The session was about employment & community inclusion. Getting people employed post-nursing home? I dunno, but employment is a hot topic nowadays, so I picked that one. That was not what the session turned out to be about. It was somewhat about SSI and ticket to work, medicaid buy in, etc, but then I stood up, asked a question and totally derailed the entire conversation.

[image description: b/w clipart of a girl wearing AFOs w/forearm crutches (left) talking to a girl (right) w/a backpack on]

The person presenting started briefly talking about how there is this big unemployment rate for PWDs 18-26 and after that it seems to go down some. PWDs aren't steered towards thinking about work post-high school. They're steered towards adult service providers and day recreation programs. Academics need to be balanced with work preparation she said. She very briefly mentioned the big statewide transition program in New Hampshire (where she is from) for 18-21. Someone stopped and asked a question, and then before she could get another word in and try to get back on track after she answered, I stood up and forcefully asked a question.

"This transition program that you're talking about, is it for students still being serviced by their public schools? Because what about people transitioning from high school to college? I'm 24 (it feels weird to say that), I'm about to graduate, and I feel like we are a very underserved and ignored population."

People thanked me for bringing up the point. I said that I was never in special ed, got rid of my IEP in 3rd grade and had a 504 plan all through school, and there was no "transition" for me. "What about trying to steer students to college? Many students don't realize that they can go to college, that they are capable of it. It isn't easy, it certainly hasn't been for me, it's been 6 years, but many students can do it." There's just things like school systems not realizing that students not in special ed are still eligible for voc rehab funding. Who knew the state pays for crips to go to college?

The state of Maryland I think puts on a big transition conference every fall. I know of the one that happened in 07 because I got on this list after I got my workshop grant. I had wished I didn't have class so I could have gone. I got the thing w/all the sessions on it. There were so many broken up into all sorts of categories. Pediatric to adult health care transition, school to employment transition etc. I was particularly impressed by how much they had geared towards health care. But, there was nothing in all of those sessions covering transitioning to a higher education setting. Not even one. It got me enraged, just as the session today ticked me off unintentionally (although more so because that conference had been completely organized by our state's voc rehab). If voc rehab doesn't even know what to do w/the kids whose educations they're going to be footing the bill for, then, well, we're all doomed.

Another thing, it seems as though a lot of the honest to g-d professionals that were in that room w/me had gotten into their field as a byproduct of having a crip kid. Which was totally cool because they were so passionate about what they were doing on the policy level even. But one of them mentioned how the expectation that professionals (mainly drs and such) have for kids very early on in life is projected onto the parents who are then completely brainwashed by the time their kid is 18 that they truly believe that their kid is incapable of working (which by and large is not the case). So then, um, the kid believes that too of course.

Another parent-professional brought up how important it is to get the parents involved, to get them engaged, to get them totally on board with this 'hey your kid is going to go out and get a job' thing. Ticked off lately by some conversations I've had recently with the person who runs the 18-21 high school to work program right here on campus, I had to say something to that of course. I had to say that I semi-disagreed w/her. "What about getting the student involved? It's more important to get the student involved then the parent. I mean, yeah, parents are important too, but your other child all along gets other messages about planning post high school and figuring out what they want to do w/their life. Do that. The students need to believe that they can do something even more then their parents do."

Sheesh. Treat your special ed students like they're no different then their regular ed peers and they will be. Treat them like they should have goals and aspirations that are just a little bit of a reach for them, and they will meet those goals, just like most other students. By golly, even some students who have spent the majority of their time in special ed or in inclusion settings with tons of intensive pull out services can go on to college. It is possible. I've heard the stories. Refer to The Short Bus. Work with both your special ed and regular ed students w/disabilities to find strength-based strategies that will help them to be successful in life. Strategize and problem solve with them. As the guy said today in the community organizing session I went to, don't come at a problem w/the answer and try to fit the problem (or fabricate a problem) into the answer. Come at the problem w/a question. Or questions. Seek out the answer and then ask some more questions if you have to. Then the solution will actually work. What a concept!

I wish I could attach a flow chart here. Ask yourself, 'can this kid go to college? Do I think they might be able to succeed?' That is the essential question. If the answer is no, ask yourself if there is even the tiniest voice in the back of your head that says maybe. If the answer to that is yes, or if the answer to the first question is yes, then you have come up w/your problem. How? How can we make sure s/he succeeds? Start asking yourself, the kid, their parents, their outside support system, the professionals they work with. The kid in particular might have no f*cking clue.
Their shrink is a good place to start in figuring this out. Refer to the bottom of my blog roll. Everyone Needs Therapy. I truly believe that.

I went through freshman year failing everything, but surrounded by people who wanted to help me. Except that they kept waiting for me to be self-directive; to tell them exactly how to help me, exactly what to do. I didn't know. I was in uncharted territory that year. I'm all for person centered planning. It works way better then systems centered planning. But sometimes (most of the time) it needs to be a collaborative effort between the client and the professional. Get down and dirty in the trenches with your client. You need to be on equal footing with them. As a professional don't assume that you know better then your client. You don't. Who could possibly know
better what is best for me then me? Help your client to fill in the gaps. Strategize with them, facilitate.

As the guy in the person-centered planning session said, you have to look at what is important to your client as well as what is important for your client. For example, it may be important to your new crip college student to make friends, establish social connections. But, it is important for them to go to class. That's what they're there for. Don't discredit your client's need to have a social life and tell them that the only way for them to ever graduate is to live their life for the next how ever many years in the library like a recluse. Help them to find their best balance between socializing and studying. Based on that particular student and their disability issues this may mean altering their course load in order to accomplish both goals. That idea may be unsettling to you at first, or the kid, or their parents. But work your way through that--or send them to a good shrink.

But above all, just start thinking about kids like me. Start discussing kids like me. Keep them somewhere in your mind, even if it is not the very front (hey, we all have to start somewhere). We're out there, we exist, and we need just as much person-centered strength-based goal direction as the next kid. We're not in special ed (or we are, but we're more high functioning then your "typical" special ed student) but we need more specific, more custom tailored person-centered plans then regular ed students. We're lagging behind because we're being left to fall through the cracks (someone please correct me if I am wrong and this is not as dire as I am presenting). It doesn't have to be this way. We don't have to struggle quite as much. Just do something.

*off my soapbox* If you like my clipart go to
There is never enough good crip clipart to go around. I have such a hard time finding it when I need it. Found it by accident tonight, wasn't looking.


Anonymous said...

The graphics are cute.. I don't come across many, either.. Keep meaning to ask this one blogger if they have any or could create any for our community..

Cyber hugs from North Georgia.. :)

John Reiss said...

There are some professionals who are working hard to support transition to higher education of individuals with disabilities and chronic health conditions One resource center is in DC:

- see:

But obviously they were not at the meeting you attended and there is lots more to do ---

Santi said...

Physician-Parent Caregivers (PPC) had a panel presentation at the '07 Maryland Transition Conference. Our primary focus is on Health Care Transition, a necessary process for students with chronic conditions and disabilities to complete if they are to succeed in anything else. The goal is for these young adults to manage their own health and health care. Health Care Transition and transition in general are not even in place for students with IEPs. PPC's panel included a public high school principal and we specifically addressed the chronic neglect of transitioning to higher education.

Cheryl said...

Santi, glad to see that locals read my blog (you live right by my parents it seems) and that there are people addressing healthcare transitioning. It is also a BIG issue, I know. For me the issue was kind of moot being that there is no such thing as a dr that specializes in adults w/CP (why is that?) So when I was 13 and we decided that we didn't like who I was seeing we found specialists who would just keep me on. They just better not ever retire...

I put myself on your mailing list, and btw, I'm trying to develop a top secret program up here and will probably be contacting you guys when the magic employment fairy finds someone who wants to give me a grant to pay me to do it.

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