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!

Friday, August 28, 2009

More On the MD State Budget Cuts for DD Services

I know this guy sort of. We used the same PT as children. VERY proud!

ANNAPOLIS, Md. - Two brothers fighting cerebral palsy say Md.'s budget cuts could make life tough for them and people like them.

Aaron Kaufman has watched the state budget cutting process more closely than most. He was born with cerebral palsy, so was his older brother, Jay.

Kaufman says that possibly every Marylander with a developmental disability is going to suffer because of the cuts approved in Annapolis.

"It's hard to fathom every consequence because the decisions have just come down...but it promises to be dire," Kaufman said.

Among the 450 million trimmed from Maryland's budget, in addition to employee layoffs and furloughs, are funds for the Developmental Disabilities Administration.

Aaron says day programs and groups homes like the one where his more severely affected brother live will suffer.

"The governor's decision today cuts those wonderful group homes, those miracle workers that give them a since of dignity every day," he said.

Kaufman, who has graduated Magna Cum Laude from Montgomery College and starts this week at the University of Maryland, fears that the 19,0000 Marylanders with disabilities now waiting for day or residential programs may never get in, leaving aging parents as the primary caregivers.

"I have come to the sad conclusion that the governor doesn't feel people with disabilities are a priority," he said.

Grant for Parent Leadership in Maryland

Maryland Developmental Disabilities Council
Request for Proposals - August 2009
$100,000 Available for Education Initiative

Educating Students with Disabilities in the Least Restrictive Environment:
Parent Leadership

The Council seeks proposals that will increase the number of parents, family members and other concerned individuals and organizations actively engaged in systems change regarding the education of students with disabilities in the least restrictive environment.

Proposals are due to the Council by October 9, 2009.

The Request for Proposals, including all pertinent information, and the budget package are attached and can be found at:

Or contact Linda Nelson at the Maryland Developmental Disabilities Council:
410-767- 3670 ext 1 or 1-800-305-6441, ext. 1

Please forward this to interested individuals and organizations. Thank you.

Thursday, August 27, 2009

Thankful Thursday

This week I am thankful because...

  • of a friend named G
  • the 48 starts MONDAY outside my door!!!
  • I have furniture
  • my botox kicked in over the weekend!!!
  • I'm getting my pathetic chair repaired this morning (hopefully they'll get here in about an hr)
  • I seem to have gotten my blogging mojo back
  • Tuesday I finally joined the pool at the League (now if only I go)
  • the heat index has been below 100 finally
  • I'm starting to put together a decent looking alternative medicine plan for my BP
  • I can still do 200 crunches and 30 push ups after a long hiatus

Quote of the week: "We're not paid professionals... We're paid unprofessionals" ~D.R., One of the facilitators of On Our Own

Tuesday, August 25, 2009

How do I Get my Hands on This Documentary?

There's a 1hr Primetime special on the Mad Pride movement tonight at 10pm eastern on ABC.

I have a date with my TV tonight. If you watch it too, let me know what you think.

Sunday, August 23, 2009

Building the Network Teleconference

Human Rights for All Tour
Building the Network Teleconferences

It's official. On July 30, the US signed the UN Convention on the Rights of Persons with Disabilities, moving us one step closer to winning the fight for our human rights.

But there is much, much work to be done to bring human rights home. Every day in this country, people are still being institutionalized, drugged, and shocked against their will, or living under the control of the mental health system through various forms of "involuntary outpatient commitment." Alternatives are still few and far between, leaving people with little in the way of choice and voice.

The power to change this is in our hands. USNUSP seeks to use the language, principles, and framework of international human rights to end these abuses, and to build a more just, compassionate, and inclusive society for all.

But in order to bring this vision to life, we need YOU. We want to hear from you. This is YOUR network. What do you want it to be? Please join us on two teleconferences coming up this month to discuss these and other issues.
Agenda to include:
  • Report on the "Human Rights for ALL" Tour
  • How can our mission and vision better reflect our values?
  • What should our membership/network structure look like?
  • Fall plan of action, campaigns, ongoing skill-building and organizing discussions.

Thursday August 13, 9 - 11 pm EST
Wednesday August 26, 9 - 11 pm EST
The call in number is 1 (218) 339-2699; access code: 907877#

Saturday, August 22, 2009

The American Girl Doll Wheelchair

For the American Girl doll who needs her own wheels, this wheelchair is just right. It includes adjustable footrests and a side pocket to hold whatever she wants to carry along.

Living in Baltimore, I can't get DC radio stations in my apt, but we can get them in the car. Go figure. So I often have internet radio on when I am home. Such was the case yesterday when an ad from American Girl dolls popped up in the player. HMMMMM..... I thought. I wonder if they still sell the AGD wheelchair? That wheelchair first appeared in their catalogue about a dozen or so years ago, right about the time I was getting tired of my Felicity doll, so although I thought it was totally awesome and was so excited to see it in there, I never wanted it (a few years later though I begged for the Cabbage Patch doll on crutches). I'm happy to report that AG does still sell it's wheelchair (picture above) for their "just like me" dolls.

However, I feel like AG hasn't reached their target population. Take a look at the product description above & then look at the comments. "For the American Girl doll who needs her own wheels..." AG seems to get it. They get how important it is for little wheelchair using girls to have a doll like this. How much it can help their self-esteem. But those moms aren't buying this chair for their daughters. I read all of the comments. Not one mom said she bought this for her chair using kid. There was a powerchair using grandma who bought this for her grandaughter, and 2 or 3 mothers who said they liked how playing with the chair teaches their kid(s) about diversity, but that was not the vast majority.

The vast majority of mothers commented on how they almost didn't buy the chair because they figured their daughter wouldn't play with it much. I feel like this is ableism in full force. I kind of infered that they were uncomfortable with their daughter playing with a "handicapped" doll. Why be so shocked to find out that your able bodied daughter plays with it all the time, that it is one of her favorite toys? It's 2009. She realizes we don't have the plague.

The other thing I noticed is how much mothers/daughters are pairing the chair with the Feel-Better Kit and how much the kid plays doctor/nurse. From the description, AG seems to be marketing the kit for use with dolls that have "sports injuries" (they have several different sports sets for the dolls). The child lifer in me loves this. Medical play decreases kids' levels of anxiety when they are faced with being in a medical setting, and it seems AG is trying to promote a "get out there and be active" lifestyle.

It's just... whatever happened to inclusion? Again, it is 2009. Where are the parents who bought this for the sister of a kid who now has to use a wheelchair, to make her more comfortable with the idea? Where is the mom who bought it for the able bodied girl whose best friend uses a wheelchair? Or what about pretending that your doll is Sally from your class in school/camp/church etc? What happened to the fact that the chair is (was?) clearly being marketed towards chair using girls themselves?

Why aren't we there yet?

Friday, August 21, 2009

Haven't Done One of These in Awhile

Some Links:

Fresh Faces, Fresh Voices: How are twentysomethings with disabilities dealing with the post-ADA era? What are they thinking? (The current cover story from New Mobility)

I consider them my Posse. I don't know German, but I've seen him around and he has an AWESOME tatoo (Photo left, below, courestry of facebook) I also LOVE Kara's blog. I'm a big fan of hers and would LOVE to meet her sometime. Plus, I LOVE her artsy pictures too (photo right above).

Also, from New Mobility and Not Dead Yet, an article from 2005 by Mike Ervin, another ADAPTer Clip-N-Save Advance Medical Directive Here's my own post on death.

Want to know how that Rally went? From the Baltimore Sun blogs, Budget protests begin in earnest; disabled community rallies in Annapolis. I missed it & basically spent 8 hours of my day waiting on paratransit (but that's another post entirely).

Lastly, from CNN, How Health Reform Might Affect PWDs:

Thursday, August 20, 2009

Thankful Thursday PSA

"Everyone has friends. There's online friends; friends to go out with on a Saturday night; friends to hang out with and do nothing; friends who show up on moving day; and then there are the friends who will be there if someone is dealing with a mental illness. Are you one of those friends?"

I saw this on TV over the weekend and just had to share. I find it even more powerful then the other one. Little did I know (found out on youtube) that it is 2 years old. I'm lucky enough (and thankful) to have 3 good friends that still make me get dressed and drag me out when it comes to it, but many people don't even have one. What will you do?

Monday, August 17, 2009

Rally Against Budget Cuts to DD Services in Maryland

The state of Maryland continues to struggle with a budget deficit of about $750M. $280M was cut last month which resulted in the elimination of the .9% inflationary increase for DD (developmental disability) providers. Another $470M in cuts will be proposed at the Board of Public Works on August 26. There is a good chance that this round of cuts will include a reduction to the base reimbursement rates to DD providers, and could be as much as 2%.

Though we don’t want to unnecessarily alarm you, we do feel this potential cut is a real threat and we need to take action. To that end, we urge you to attend:

A Rally scheduled for Wednesday, August 19 at 10:30am
On Lawyer’s Mall in Annapolis in front of the State House

We need people with disabilities, families, direct support and agency staff, and board members to attend the rally and OPPOSE any further reductions to funding for community-based DD services.

Our goal is to have hundreds of people come to Annapolis to voice their opposition to balancing the state’s budget by cutting supports to people with developmental disabilities and their families.

Please help us make this a robust, and visual event. Hand made signs (no sticks allowed, per the police) are encouraged.

If you care about this issue, PLEASE take the time to come to Annapolis on the 19th. We need to do everything we can to convey to the Governor and the members of the Board of Public Works that cutting funding for people with developmental disabilities is not an acceptable option.

ALERT: Impending Budget Cuts May Hurt Marylanders with Developmental Disabilities


If community-based developmental disability service providers face a budget cut this year, the effect could be disastrous for people receiving services and low-wage direct support staff.

Due to years of chronic under-funding, one in three providers operate with a budget deficit, making them highly vulnerable to reduced capacity and closure if budget cuts are implemented.

Community providers are left with few options to absorb further budget cuts without negatively impacting people with intellectual and developmental disabilities.

The impact of budget cuts may include:

· discharges of some people with significant disabilities currently receiving services, as their care and support is inadequately funded by the state

· discontinuing of uncompensated care, including nursing services, behavioral supports, and unfunded transportation

· deteriorating conditions of group homes in local communities

· reduced staffing levels

· decreased health care coverage for low-wage direct support workers and their children

· potential closure of whole programs

Inequity continues in funding for people in state institutions vs. in community services:

· While DHMH reimburses community providers $9.18 per hour for direct support staff, recent starting salaries for direct support staff at State Residential Centers were advertised at $12.42 per hour.

The O’Malley Administration made a commitment to the people who left the Rosewood Center:

· In the Governor’s January 2008 press release announcing the closure of the Rosewood Center, DHMH Secretary John Colmers said “Our commitment has been, and remains to work individually with each resident to provide the best possible care and services without interruption both now and in the future”.

· Cutting funding to community providers would potentially jeopardize the care and supports that people with developmental disabilities receive in the community, including the 160 people who transitioned last year from the Rosewood Center to homes and supports in the community.

Cutting DDA Services shifts costs to state programs:

Budget cuts to DDA community providers will likely result in increased costs in other state programs, including:

· Medicaid transportation services
· State Children’s Health Insurance Program
· Uncompensated hospital care

For more information, or to share that you or others from your organization will be able to attend the rally, feel free to contact me by email or phone.

Laura Howell
Executive Director
Maryland Association of Community Services (MACS)
lhowell (at) macsonline (dot) org (to protect her from spam)
10632 Little Patuxent Parkway, Suite 254, Columbia, MD 21044
(Tel) 410-740-5125 (Fax) 410-740-5124

Sunday, August 16, 2009

The Evolution of a Blog and the Human Being Behind it (A Conversation with Myself)

I've just been thinking today. Thinking is all. Thinking deeply. Something I haven't done in quite some time. Thinking about myself and of course I'm all wrapped up and emotionally involved in this blog. I mentioned my blog to someone I haven't known all that long and she said it had been suggested to her that she try it. I replyed that everybody has to find their thing. This is certainly my thing.

This thing has taken on a life of it's own and evolved in a way I never expected it to. This blog has gone political. Although it was never supposed to be political. My blog started over on Disaboom and then moved over here when I felt it needed more personalization. I don't know if that was a good move as I've lost some readership, although I've gained others.

This blog was origionally supposed to be restricted to serious discussion of serious disability issues, but that very quickly fell by the wayside, as that post illustrates. I'd have to agree with therapydoc (read her about me) that this is a blog. That was obviously an impossible goal.

This blog is slowly going flat. The emotion is running out of it. It's turning into a place for me to post stupid videos I find on other people's blogs and pictures of ice cream just to fill up space in an attempt to keep my readership. Even after its focus changed, this blog was never supposed to be about ice cream. Who cares about my cherished bowls from childhood? What people care about are my struggles and my passions (which happened to have turned political somewhere along the way). They care about things that they can identify with. Things that are emotionally charged or incredibly humorous but still deeply personal (check out Rob).

What I like most about having my life in print is how much it helps me psychologically, both at the time of writing and often months later as it enables me to be able to look back and evaluate my mood, which is extremely helpful in my journey. What this says about my mood right now is that I've gone flat. The emotion has been sucked out of me. It says I'm protecting myself from something. It says that life is hard and I've run from it, hiding behind things that are easy. Posting videos or Wordless Wednesday posts is easy, and while that may be a stupid example, I think it could be very representative of the larger picture and I don't know what to do about that. Even my Thankful Thursday posts are starting to suffer. I'm no longer finding my way, I've completely lost it. So I'm starting from ground zero today and I guess I'll see what happens next.

[image discription: the evolution of man from monkey, to hunched over, to upright, to hunched over a computer]

Saturday, August 15, 2009

I Just Like This... It Has Nothing to do With Anything...

I think it's the cute animation that's doing it for me

Friday, August 14, 2009

I Think This Video Speaks for Itself.... VERY POWERFUL

Friday, August 7, 2009

Way to Be on the Ball Sen Cardin...

After 4th of July I was inspired to write letters to all 9 of the MD members of congress who have not shown support for the CCA, plus the President, and thank you notes to Rep Cummings (the only one so far to show support), Sen Harkin, & Rep Davis (the sponsors). I hand wrote them after hearing some statistic about the amount of attn hand written things get vs mass emails. I wanted to make a point, so I spent HOURS. My 10 pleas for support were done on funky green/pink stripe w/giant funky pink flower and my 3 TY notes were done on red cards w/yellow rubber duckies all over. Hey, I figured if I REALLY wanted to get noticed...

Today I got a letter back from Sen Cardin, dated July 27, 2009:

Dear Ms *censored*:

Thank you for contacting me in support of the Community Choice Act.

The next paragraph goes on to explain to me what the CCA is like I don't already know that... who contacted who first here?????

The Community Choice Act, S.799, was introduced by Senator Tom Harkin on March 7, 2007. The Senate Committee on Health, Education, Labor, and Pensions held a hearing on the legislation on July 10, 2007. Unfortunately, this legislation was not reported out of Committee before the end of the 110th Congress. Please be assured that I will remember your support for this legislation if it is introduced during the 111th Congress. [emphasis added]

[image description: a beach ball. Get it? On the BALL... lol]

I don't have much faith in someone whose staff can't do a simple proof read before sending out a form letter. That, and I mean, if you're too busy to keep track of the year and every bill #, a simple google search will tell you what is in my sidebar--It's 2009 & the CCA was reintroduced into the 111th Congress on March 23 by Sen Harkin as S.683.

Sen Mikulski's people can at least send me an email referencing the right bill # even if all the rest of it rambles on about the CLASS act, which is NOT THE POINT!!!!

Thursday, August 6, 2009

And Now Back to Our Regularly Scheduled Thankful Thursday

This week I am thankful because...

  • I finally got my discount taxi card back
  • of friends who decide to reconnect (even if I do question motives)
  • of people who don't decide to quit their job :)
  • the 48 is stopping outside my door very soon :)
  • of grey's reruns on a crappy day
  • On Monday Sen Cardin is holding a town hall @ school where I can show up in my chair & be loud & obnoxious about the CCA
  • of quotes in blogs "Why are you trying so hard to fit in when you were born to stand out? --Unknown" (also see new fortune cookie on my sidebar)
  • I don't want to fit in anymore
  • being thankful is better then being hateful
  • awesome google image finds make me happy [picture on the right is of 6 goldfish, 5 orange & 1 green]

Tuesday, August 4, 2009

The CCA & the CLASS Act--Both of Them

All of a sudden I felt drawn to look up the CLASS Act just now. What is the difference between that and the CCA? I think I know, but I'm not sure. CLASS stands for Community Living Assistance Services and Supports. If you read this blog, you know that CCA stands for Community Choice Act. They almost seem the same (the kinda sound the same) but they're not.

[image description: a poster from the 1992 movie "Class Act." Corny? I'm trying to be cute]

From what I understand the CLASS Act would allow people to take a certain amount of their paycheck and save it in an account (the interaction between your $ and government control is where I have no clue) to be used to fund supports to keep you in your home once you're an old geezer. Can't be used towards paying off your gambling debt or anything else. The CCA however will restructure Medicaid funds to allow thousands of people to use those funds to live in the community.

I support both bills. I believe both programs have a place in this country, it's just that, well, passing the CCA is a matter of life and death and passing the CLASS Act is not. People who can afford to set aside money into a CLASS account could do the same thing without a formal government program. People serviced by the CCA can't. I'm refraining from a full out rant because this isn't the origional intention of the post.

The point was that when I googled CLASS Act I was lead to H.R. 386: CLASS Act of 2009. If you click on the first CLASS Act link you'll note that the CLASS Act is actually H.R. 1721. Apparently CLASS also stands for College Learning Access Simplicity and Savings Act. I laugh at the thought of two people getting into a very heated, very passionate political arguement only to discover they were both actually talking about two different bills! Will that actually happen? Probably not. But still... way to make the political process even more confusing congress!

Sunday, August 2, 2009

How Tilite Makes Their Chairs

I have a botox appt in 2 weeks and I've decided to seriously discuss chairs as opposed to vaguely as I did over a year ago. So I've been looking at Quickies, Jazzys/Quantum Rehab (I need 2 chairs), and Tilite. Tilites are the sexyist of sexy chairs as far as I'm concerned. They make me drool. The problem? both Quantum and Tilite have colored wheels and spokes but tilite has colored seating and Quantum doesn't, but has colored casters. Does colored seating win out? I always thought I'd get another Quickie, thought they were the gold standard like Jazzys, but they only have colored frames. They lose. Plus, I think titanium is a more durable metal. Should I even give a crap what my wheels look like when most of the time I'll have my power assist on? I won't when I travel I think, I'm affraid the flight people will mess with them!

Here's a video I found of how Tilite makes their chairs. Totally cool!

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