Montanans to Sen. Baucus: Include Long-term Care in Health Care Reform-It’s Key!
For Immediate Release: For Information Contact:
June 30, 2009
Travis Hoffman 728-1630
Mike Mayer 728-1630
Missoula, MT— Montanans with disabilities and those who are aging are angry that current federal health care reform efforts exclude the very services and supports that allow them to live in their own homes with the assistance they need. On July 2, they are taking that anger to the streets, with rallies and marches in seven of Montana’s larger cities that will deliver the message that “Long-Term Care is KEY.”
“It’s especially important that Sen. Baucus hears this message,” said Travis Hoffman, Advocacy Coordinator at Summit Independent Living. “Not only is he a “key” figure in health care reform, he represents our interests in Washington, and we want to be sure he knows not to compromise our freedom. We want him to end the bias in Medicaid that currently pays for us to be forced into nursing homes and institutions, but won’t pay less for us to get assistance in our own homes.”
Title II of the 1990 Americans with Disabilities Act assures older and disabled Americans the right to receive services in “the most integrated setting.” This “civil right” was affirmed by the June 22, 1999 U.S. Supreme Court’s decision in Olmstead v. L.C.& E.W. when the court stated that “Unjustified isolation, we hold, is properly regarded as discrimination based on disability,” and is, thus, illegal. Despite the law and the court decision, the Bazelon Center in Washington reported, on June 24, 2009 that NO state in the nation has adequately fulfilled the mandate contained in the ADA and in Olmstead.
“Sen. Baucus has been adamantly opposed to including long-term care in health care reform,” said Bob Liston, Board President at Summit Independent Living Center, and Montana organizer for ADAPT. “This is simply unacceptable because we are talking about people’s lives here. Not only do people die waiting to get out of nursing homes, but when people are forced into nursing homes because of how Medicaid funding is now structured, they lose control over their lives, they lose their privacy, their freedom, they often lose their connections with family and friends, and their health deteriorates, which then costs more.”
More than 80 national aging and disability groups are calling for Sen. Baucus and Congress to include the Community Choice Act (CCA) in the health care reform effort. The CCA would remove the institutional bias from Medicaid, allowing people to choose where they want to receive assistance, whether in their own homes, or a nursing home. While some states, Montana included, provide some home and community-based services under a state-run program and/or by getting federal permission to “waive” the Medicaid rules, these services are considered “optional” and are among the first things cut when states tighten their belts. These services are not guaranteed in the same way that nursing home services are, and do not serve all the people who need them. Advocates are stating the CCA is “Key” to health care reform.
“We can look to health care reform now to insure millions more people, which is clearly a good thing. But if we don’t include long-term services and supports in reform, all these people will still potentially get forced into nursing homes and other institutions as they age or have disabilities,” added Liston. “We need to be included in health reform NOW, not wait for another 40 years.”
Rallies and marches will occur across Montana in Missoula (12:00 PM @ Courthouse), Bozeman (12:00 PM @ Baucus’ office), Butte (12:00 PM @ Baucus’ office), Helena (12:00 PM @ Baucus’ office), Kalispell (12:00 PM @ Courthouse), Great Falls (10:00 AM @ Baucus’ office), and Billings (12:00 PM @ Courthouse). Missoula marchers will begin with a rally at noon at the Missoula County Court House. Marchers in all sites will deliver keys to Sen. Baucus’ Montana offices to say “Don’t Throw Away the KEY to Long Term Care: Include the Community Choice Act in Health Care Reform and End the Institutional Bias.”
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truthtelling
doesn’t matter if you’re disabled or gay or whatever, if you’re white and rich you can dream
people will call you a visionary
do what you do
in the end they will always respect you
but if you’re anything else
if you’re hustling to keep it together
if english is not your native tongue
if you don’t have the privilege of later,
if you are unbossed & you know that your name is your own
if you act like you deserve love
do what you do want to do, say what you want to say
be shut down, called crazy
sister you taught me that everything is a resource
when i say we are on the threshold of infinite potential
i mean i got you and i know you got me. i believe in your dreams
you shape me
voice shaky, don’t let me question the experiences that have created me
your truth is everything
letter to my middle school friend
hey lady brown,
last week i heard someone say that our childhoods make us who we are. as you and i message back and forth on facebook talking about post-graduation plans i wonder about our paths, how we both became women of color (here i use women of color as a political label we take up as a banner of solidarity and commonality, not our non-whiteness). who introduced you to for colored girls…, D? how the hell did i stumble upon the RWOC blogosphere and this bridge?
in middle school, we had every white lady wrapped around our fingers. amazing what a quirky black girl & a sweet asian girl in a wheelchair can do to win the hearts of white people everywhere. their open fascination with us made it so easy. smart colored girls they could give love to, even if they never said it out loud. i don’t know how this worked for you but this is how i got the accommodations i needed, never had any problems at IEP meetings because i had every person in power feeling like they had adopted me (spanglish is so my movie). mixed girl with second generation immigrant roots, i’ve been speaking dominant culture language since i first learned how to talk. with case managers, teacher’s assistants, school nurses, and guidance counselors, i had so many white women intimately involved in my life, shaping who i was.
in high school i went to a conference for disabled youth leaders. shy girl and overwhelmed by so much disability, i didn’t talk to anyone, but the event changed my life. i talk a lot about community and that’s why— once you experience being in community, going back to shields, walls, and the isolation that comes from denying yourself parts of you is not an option. after that conference, i jumped into the youth arm of the disability rights movement. white people everywhere, i had a gubernatorial appointment at age 16, started an organization at 17, and by 18, was persuading various state agencies to let me be responsible for thousands of unmarked dollars. catapulted into a beautiful community, i devoted my life to this and was still lonely. tongue still tailored to them, unspoken racism and unchecked privilege had me unable to completely claim this home.
after doing that for three years, i completely retreated from that scene and submerged myself in radical oganizing and local work that put us at the center. co-organized an anti-racism and economics forum last fall attended by people of color looking for the analysis to speak to collective experience. worked with SPEAK! women of color media collective to create and distribute a spoken word CD that is being used in classrooms, bookstores, and learning circles. other young disabled people and i created our own youth leadership model and then hosted our first youth leadership forum. helped youth leadership org be rebirthed into the disabled young people’s collective. worked to get a disability history bill passed in NC leg. am leading a group in starting a center for independent living since our area is so underserved. serving as prez for the org. that created me. somewhere along the way, i started writing poetry. people like us are my life and i can’t even pretend like things that aren’t relevant to us are important. too tiring to go back to that old way of being. i can’t do politics, don’t have time the energy to act like i care.
so now i am balancing all of this and a lot of days, (like yesterday) i feel like the world is crumbling. the work is so connected to personal relationships and i am so emotionally-dependent on the people i am in community with. it’s all so high stakes now too, if something doesn’t come through it can mean us not coming together this summer or someone moving into an institution. when i fail at something, it is hard because the people i love most are counting on me and i have let them down.
but today i am setting my own pace and even though i am overdue on 5 or 6 things and have not responded to email in two weeks, i think everything is going to be okay.
how are you, girl? congratulations on graduating, everyday i tell my sister to be like you. i know you are doing amazing things. hit me up when you’re free.
love always,
cripchick
What Gets You Going?
written after a conversation with the bff. from pending drafts folder…
we spend the day talking about what turns us on
between the nitty-gritty details of positions, places, people
i forgot a few things
want to catch my attention?
touch my shoulder and whisper some audre lorde in my ear
intersectionality, being our whole selves, oh yes
want to make me go weak in knees?
wait for me to finish tabling and we’ll walk ’round town passionately debating nonprofit industrial complex and success and failures of the movement
(so yours)
wanna make it hard for me to stay proper?
dream up new ways to use art and storytelling
talk about technology as a medium for community building
claim media as ours
explode preconceived conceptions of normativity
know your body as a political position of resistance
you can forget the rest
it’s on
ya’ll do know that’s why i go to the allied media conference right?
–
tomorrow is the last day to sign up for on-campus housing (which is most accessible since it’s next door to AMC.) see yall there?
accessibility
As an event planner and a member of communities that are often excluded, I have learned a lot about what people need to participate and wanted to share (and learn) with you. This is a page on all the things people forget about accessibility [basic things to make it easy for people to be a part of something]. Can folks add to this list in the comment sections? When are times you have been excluded? What do you need to participate? Are there things (movements! organizations! listservs!) you are not involved with because of access or a feeling of being unwelcome? If so, I would be sooo thankful if you could share that experience so we could learn from it. xoxo– cripchick
Accessibility is:
do you have childcare so parents can come? will kids be safe and have programming so parents don’t have to worry about them?
do you have different payment options? if people can’t afford your event, can they volunteer their time or services instead?
how do people hear about your events? is it just email and facebook or do you use mailings and phone trees too?
with a long history of trans and genderqueer people being harrassed and in danger when they go into bathrooms, do you have bathrooms where gender does not matter? a lot of times gender-neutral bathrooms are single-room bathrooms where disabled people can also go in with their personal attendants or parents can take their kids. this is helpful for everyone.
do you ask about people’s allergies or if they need vegetarian, vegan, gluten-free, etc?
is Point A far from Point B for folks that walk? what physical barriers are there?, if you’re going to close meeting room doors, are they heavy?, are there chairs for people? are the chairs wide enough that everyone can be comfortable? it’s cool to be creative about making things work but know that if basic access requires a lot of energy, people may not come.
always be aware of time. if you are planning an event, it’s important that people know the schedule and you try your hardest to stick to it. many autistic people cannot participate if you don’t do this. for disabled people who have to schedule out transportation, bathroom trips with personal attendants, etc, a schedule that is always changing means they will miss programming (don’t assume people can stay a hour later if you’re late on schedule!) if there must be schedule changes, be clear about them so people know.
if people request it, are your documents available in large print, braille, on a cd, or in another language? did you set aside money for ASL (or other languages) interpreters so people can request them? do people know that they can ask for these things?
is everyone saying their name before they speak? if you giving directions, do you know how to explain it to a person with a visual impairment? if you are watching a movie, does it have audio description or are you prepared to describe what is happening visually? if it is a multi-day event, can you arrange a time where people can go on a tour of the buildings so they know where everything is?
does everyone know what you are saying? are you using word everyone knows and if not, can you explain those terms? do your documents and presentations have pictures that explain what is happening?
are you using a variety of different formats? (e.g. media wise— documents, videos, audio, pictures. Presentation styles—large group, small group, interactive activities, art-making, etc?) are your rooms big enough that people can walk around or stand during your presentation if they want to?
if you are hosting an event, do you have a space where people can go if they need to be alone? do you have flexibility so people can step back if they are getting overstimulated or tired? (for safety at youth events, this works well with a “buddy system” so people can tell someone they are taking a break). it is also helpful to have another lounge where people can go take a mental break and socialize. (this also helps clears up congestions in hallways)
are you committed to creating an environment where people feel safe? allowing people to make comments that are racist, sexist, heterosexist, ableist, classist and more make it hard for people in these groups to participate. try to understand the historical context behind what you say
if you are about to use a really graphic image, phrase, or story, do you let people know? are there kids there? people in your audience may be survivors of abuse or have PTSD, better safe than sorry.
can you arrange for a message board system so people looking for rides can share?
are you respectful of people’s preferred gender pronoun, disabilities (not all disabilities are visible, go by what folks say instead of assumptions), and backgrounds? remember that no one ever owes you an explanation for who they are.
What else is missing yall??
