Links on Health and Exercise Topics for Disabled People

Access to Medical Care for Individuals with Mobility Disabilities 

Disability.gov’s Guide to Health Information and Resources

Medicare Coverage if You're Disabled

Cigarette Smoking Among Adults with Disabilities

Disability and Obesity

Chronic Pain Relief with Swimming Exercises

Physical Activity for People with Disabilities -- Including cancer survivors, those with type 2 diabetes, and those with osteoarthritis

A Safety Guide for Disabled Pedestrians

Finding Good Medical Professionals for Kids with Disabilities

Pamela Wilson of Bella Online has written an informative and supportive guide for parents of children with disabilities who are trying to find good doctors or other health professionals for their kids. "Asking More from Medical Professionals" includes several paragraphs of tips and discussion, followed by links to other resources.

Some of the tips include

• For parents whose children have a condition or health problem that is new to the family, it may be helpful to seek out an adult with the same diagnosis to learn more about their children's healthcare needs. 

• Another serious consideration is how comfortably staff and doctors relate to the child during medical visits, exams and discussions. When we take our children in to their medical appointments, we are teaching them how to be lifelong advocates for themselves. Staff who do not treat babies and children with respect, consideration and kindness teach them to expect very little from alternate caregivers. 

• It could be that it is easier and of greater benefit to your child to establish a relationship with a good doctor and provide them with up to date information about your child's condition than to trust in a medical professional who seems to have the reputation of having 'many patients' with your child's condition. 

• A doctor who knows your child as an individual is much more likely to attribute uncharacteristic behaviors or other symptoms to an additional developing medical condition. Families of children who do have or will develop a dual diagnosis need medical professionals who will listen to their concerns and observations. That in itself can save a child's life.

Links are provided to numerous other articles and discussions of relevance, including how to talk to your child's doctor, pain management, "Breaking Up with Doctor Normal," and posts on topics such as discrimination, disability, and advocacy in medical settings.

Read the post on Bella Online.

Editorial urges Maine doctors to provide interpreters for Deaf patients

The April 3, "Maine Voices" editorial in the Portland Press Herald, "Deaf Mainers shortchanged when health professionals don't provide interpreters," gives the case for hiring qualified American Sign Language (ASL) interpreters for Deaf Mainers. This is a thorough, articulate, and important piece for all health-care professionals in Maine (and elsewhere) to read and understand.

Meryl Troop of the Maine Center for Deafness and Kim Moody of the Disability Rights Center of Maine start by describing the arguments and excuses a wide variety of health care providers in Maine use to explain why they do not provide interpreters for patients who request them. The most common reason seems to be that health providers are accustomed to "writing back and forth" with hearing-impaired patients and believe that, since they believe this works well for some or many patients, it should be good enough for all. Troop and Moody explain why this is not the case:

Deaf people who use American Sign Language to communicate ... just want to understand their health care, their vision changes, why their glasses aren’t quite right, why their child needs a specific procedure and what they’ll have to do to provide home care for their partners, spouses and children. Just like people who can hear. They request an interpreter because they know that will be the best communication accommodation that works for them....
“You can’t say working through an interpreter orally is as effective as one-to-one written communication.”
Actually, we can ... Fewer than 1 percent of Maine’s population have been Deaf from early childhood, before they learned to understand and speak a language, and they may never have learned to read and write well enough to carry on a complex conversation about health care and medical issues....
In any event, do health care providers have the time to write out, in the same level of detail, what they say on a routine basis to patients who can hear and speak English? Is their handwriting legible when writing under the time constraints of today’s shortened appointments?

This article does a great job of explaining that -- even though over forty years have passed since most health care settings were mandated to provide equal access -- many health providers still don't realize that access is not a cookie cutter situation. In the cases Moody and Troop are discussing, this means that what works to communicate with a late-deafened person whose native language is English may not necessarily be what works best for a prelingually Deaf person whose native language is ASL.

The article also references recent legal cases in Maine where judgments have consistently gone to the Deaf patient's right for communication access in medical settings. The legal and ethical burden is on the health care professional to provide real, two-way communication access, which is best determined by who needs the access. Patients' rights and Deaf or disability rights are may be the same thing when the patient is Deaf or disabled!

Read the complete article.

Petition: Health Insurance for 69,500 Uninsured Mainers? Yes, please!

Jennifer Lunden, whom Ability Maine interviewed last year, is up to her healthcare activist ways again. She has written a petition on MoveOn.org to try to secure health insurance for the almost 70,000 uninsured Mainers. Her letter about this is below:

Here we are at a critical time, with a second chance to bring federal funds to Maine so that low-income Mainers can benefit from the Affordable Care Act just like every other Mainer. I've started a new petition to help bring our message to Governor LePage and our legislators. Will you take a moment to sign it now? Health Insurance for 69,500 Uninsured Mainers? Yes, please!
You can also make a big difference by contacting your legislators, particularly if they are Republican. You can easily look them up here: Voter Information Lookup. Let them know why you want to bring those federal funds to Maine.
Thank you for everything you're doing to bring healthcare to all Mainers.
Onward!
Lunden
P.S. Please help this petition grow by emailing it to friends and posting it on Facebook.

Ability Maine encourages you to support this petition! You can start by signing it here. 

Gov. LePage and House Republicans Tell 69,500 Low-Income Mainers: No Health Insurance Yet

Below is the text of an email from Jennifer Lunden, Maine healthcare activist, writer, and social worker, whom we recently profiled. She played a very active role in the "Cover Maine Now" campaign and is reporting on the most recent developments and what you can do to affect the future outcome of the situation.

From: Jennifer Lunden LCSW, LADC, CCS

Dear Everyone:

You may have already heard the terrible news. The Maine House was not able to get the two thirds majority needed to override Governor LePage's veto of LD 1066, the act to bring federally funded health insurance to 69,500 low-income Mainers. The vote went strictly down party lines. I believe we were just two votes short. It was a valiant effort by our state's Democrats; and by Cover Maine Now--a coalition that includes many organizations, including my agency, the Center for Creative Healing; and by people like you. 

On Wednesday, 45 Mainers dropped everything on a day's notice and lined the halls all the way from the House chambers to the Senate, holding signs saying "Cover Maine Now," and handing out placards quoting testimony from people all over the state. But in the end, all of our efforts weren't enough to convince Republicans to break rank from our embarrassment of a governor, who made national news for his latest blunder. (Here's Rachel Maddow's hilarious take on our not so hilarious situation here in the state of Maine.)

So. What now?

The good news is that the campaign to bring federal funds to Maine is not over. From Cover Maine Now: 

"Although approximately 25,000 low-income Mainers may lose their health care coverage and 45,000 will remain uninsured as of January 1, 2014, we can limit the harm by urging our elected representatives to enact legislation that would accept the funds next year. This is why we need to continue our fight and we need to reach out to our lawmakers to hold them accountable for their final votes following the Governor’s veto."  

It is important to raise awareness about the vote and to encourage people to share their views with legislators. Please use social networking to do this, and consider sending a letter to the editor.

And from Cover Maine Now, here's another idea:

Please thank your Representative if he/she voted to cover more Mainers through MaineCare, or tell your Representative you’re disappointed in his/her vote against LD 1066. 

First – Look up your Representative. Enter your town and residential address and click submit. Then, click on the Elected Officials tab and write down the e-mail addresses of your State Representative (under Maine House of Representatives).

Next - Check how he or she voted on the LD 1066 override.

Then – Copy and paste the e-mail below into a new e-mail message, fill in your legislator’s name and add in your name and contact information… then, send it along to your legislator!

Finally – Spread the word to keep our fight alive. Send this message along to a few friends and encourage them to take action as well.

Thank you!

Send the following message to those who voted YES on LD 1066:

Dear [Your Representative],

Thank you very much for supporting LD 1066, legislation to accept federal funds to provide health care to nearly 70,000 Mainers who need it.  I am disappointed that LD 1066 did not succeed, but I hope that you will continue to advocate for accepting federal funds to expand access to health care.  Every day that we forgo these funds is a day that uninsured Mainers face the possibility of a financially ruinous medical crisis. 

Not only is accepting federal funds the right thing to do for our friends and neighbors, it will help support the Maine economy and our hospitals.  By accepting the federal funds and providing health care coverage through our state Medicaid program, Maine can reduce overall health care costs and save millions of taxpayer dollars being spent treating uninsured people in emergency rooms.  

I hope you will keep working to bring these funds to Maine.  I want our state to have a healthier workforce and a more competitive economy.   

Sincerely,
[Your Name]
[Your Address]
[Town/City]

Send the following message to those who voted NO on LD 1066:

Dear [Your Representative],

I was very disappointed to hear that you did not support the final vote on LD 1066, legislation to accept federal funds to provide health care to nearly 70,000 Mainers who need it.  Maine people have worked hard to provide for themselves and their families and deserve the opportunity to stay healthy. Every day that we forgo these funds is a day that uninsured Mainers face the possibility of a financially ruinous medical crisis. 

LD 1066 represented a compromise among Democrats, Republicans, and Independents that would have brought generous federal funding to Maine beginning January 1, 2014.  A large majority of Mainers support accepting federal funds to increase access to Medicaid coverage.  Accepting these funds would have saved lives, created more than $350 million in economic activity, created 3,100 jobs and prevented potential tax penalties for large employers.

I hope you will reconsider your position on this issue in the coming months.  Maine needs to focus on policies that will create a healthier workforce, boost our economy, reduce societal costs and keep our state economically competitive.  Accepting federal funds would do just that. 

Sincerely,
[Your Name] 
[Your Address]
[Town/City]

And finally, I want to say a special thank you to Republican Senators Roger Katz, Patrick Flood, and Tom Saviello, for breaking rank with their party and expressing their support for LD 1066. It is regretful the bill never made it back to the Senate, where they could have continued to stand up and represent the vast majority of Mainers who want healthcare justice in Maine.

We will continue to fight.

Onward!


Lunden

Jennifer Lunden on Writing, MCS, Maine Healthcare Activism, and Human Connection

Waking People up and Connecting with All Living Things

Interview with Jennifer Lunden, Maine Healthcare Activist and Award-Winning Writer and Social Worker

By Sharon Wachsler

Interviewing Jennifer Lunden (known to her friends as “Lunden”) has been on my list of things to do for a year. I first got the idea when her essay, which touched on her life with MCS, was published in the literary journal Creative Nonfiction. But before I managed to approach her, the piece had won the Pushcart Prize and Lunden had been named Maine Social Worker of the Year! 

There was always more to ask: during the weeks that we’ve corresponded, conducting this interview, Lunden has been leading the charge in crucial statewide health care activism. In fact, we both wanted to get this piece published this weekend because a year’s worth of her healthcare activism in Maine is coming down to the wire right now. And while Lunden certainly values words and writing, they seem to be most meaningful to her when they empower people to act!

~ ~ ~

Where are you from, and where do you live now?

I was born on the army base in San Antonio, Texas, during the Vietnam War. When I was six, we moved to Peterborough, Ontario, in Canada. In 1989, at the age of 20, I moved to Portland, Maine, and I have been living here ever since. In Canada, where they have universal healthcare, I was healthy. I fell ill within months of moving to the US, where I was uninsured.

How did your being uninsured affect your experience of becoming ill—getting diagnosed, treated, or other aspects of your life?

That is such a great question, Sharon. First of all, as someone who was raised in Canada, the first time I went to the doctor’s here it just felt wrong that I had to hand over a check after the appointment. I’d never had to do that before. And here I was too sick to work, and somehow I needed to find a way to pay a doctor to help me get better. Talk about a Catch-22!

Eventually, I learned I could go to the hospital and apply for a “green card” and get free services at their clinic. Whenever I went to the clinic, it was a long wait and a different doctor every time.

Since those doctors proved incapable of helping me with my chronic fatigue syndrome (CFS), I soon turned to alternative treatments. But I was limited in what I could do, because I was so poor.

Eventually, when I went back to school, I used student loans to help pay for my medical care.

How did you become chemically injured?

Everything started with a case of mononucleosis that turned into CFS. Over time, as the fatigue gradually abated, the chemical sensitivity and food allergies got worse and worse. I can’t with certainty pinpoint a specific incident of chemical injury. But I have for a long time suspected that the flea sprays that I used to treat my cats and my apartment—when my immune system was already severely compromised by CFS—triggered the chemical sensitivity. Pesticides are neurotoxins. It is not a great leap of logic to suspect that they damaged my brain.

Your essay, “The Butterfly Effect,” was published in the esteemed literary journal, Creative Nonfiction, in the winter of 2011. Most of the piece was about monarch butterflies—their transition from caterpillar to butterfly, their migration, and their dwindling numbers due to habitat destruction, climate change, and other environmental damage caused by humans. However, woven throughout the essay are tidbits about how your multiple chemical sensitivity (MCS) affected your pilgrimage to study and experience the monarchs and their migration. 

When did you get the idea for this piece? How long did it take you to write it?

In early winter 2007, I was thinking about my predisposition toward seasonal affective disorder, and how much it helps to go someplace warm and sunny in the middle of winter, and I started to fantasize about a trip to California. I decided to take a storytelling workshop at the Esalen Institute. And then, as I began dreaming of California, it dawned on me that I could realize a lifelong dream and go and see the monarchs that migrate to various sites there. And then I decided to write about the monarchs. When you tell people you are a writer working on a story, sometimes they grant you special privileges. In this case, I wanted to tag monarchs, something I’d dreamed of doing since I was a little girl.

I began researching online, and that is where I learned about Pacific Grove, aka Butterfly Town, USA, and the Butterfly Lady, aka Ro Vaccaro. When I listened to “A Woman’s Metamorphosis into ‘the Butterfly Lady’” on All Things Considered, I had to meet her! I wasn’t able to find online contact information for her, but I did find a friend of hers, who gave me her mailing address. She told me the Butterfly Lady was in a convalescent home and in very poor health, but that she would probably love to meet me. So I mailed her a letter. Unfortunately, she died two days before I was supposed to meet her.

Lunden in California, just an instant after a butterfly took flight from her fingers.

I always say my illness made me an environmentalist. I thought I could find a way to tie together my experience of MCS with the story of the declining monarchs. I’ve always loved immersion journalism, since first reading David Foster Wallace’s essays in Harper’s. So I decided I would write about my experience flying to California to see the monarchs while coping with MCS.

A wonderful side benefit is that the storytelling workshop changed my life. In that five-day workshop, I transformed from someone with a core belief that nobody wanted to hear what she had to say into a storyteller. I suppose you could call it a metamorphosis.

As for how long it took. . . Oh, God. I am a slow writer. It probably took me three-plus months of committed writing on weekends, every chance I could get. And then when it got accepted, there were more weekends devoted to rewrites.

As I was reading your piece I was remembering the fields of milkweed at the community garden where my father gardened when I was a kid. I didn’t know that milkweed was so essential to monarch butterflies nor that it was being eradicated by herbicides, development, and industrial farming. I tried to remember if I had any milkweed around my yard, and if not, I thought, “How can I get some and plant it?” And then the answer was in your essay: monarchwatch.org

sells milkweed seeds so people can make their yards “monarch waystations.” Were you hoping, by writing this piece, to move more people to help the monarchs?

To me, we and the monarchs—and all the creatures on this earth—are inextricably intertwined. John Muir, the naturalist who founded the Sierra Club, said, “When we tug at a single thing in nature, we find it attached to the rest of the world.” So when I wrote “The Butterfly Effect” I was just hoping to wake people up. I thought people might not want to hear about my illness, but who wouldn’t want to hear about the beautiful butterflies? I believed the beauty and lyricism of the butterflies would make my message more palatable. I wanted a way to get people to read to the end and get the message. So, yes, I do hope that more people will help the monarchs. Monarch waystations are something fun that people can do. But we also need to fight GMO farming. We need to do that for the monarchs and for ourselves. And we need to take a serious look at our dependence on chemicals. There are other alternatives that are more sustainable.

Not only was your essay published in Creative Nonfiction, but it won the Pushcart Prize and was published in the 2013 edition of the Pushcart anthology. That’s a very big honor and gives your essay an even wider readership. I’m wondering how the MCS aspect of your essay has been received. Have you heard from people who didn’t know about MCS or were skeptics who were affected by your piece?

I love this question, because just a few weeks ago my Google Alert let me know that someone had blogged about “The Butterfly Effect.” Here is how she starts her essay:

I have a confession to make. This will surprise some of you who know me, but I’m afraid this story forces me to admit it, as shameful as it may be, and as hard as I’ve worked in the past to leave this particular part of my personality behind: I’m a bigot. No, not against race or gender or ethnicity or religion or any of the usual factors; I’m prejudiced against people who say things like, “I have multiple chemical sensitivity.”

The author is Karen Carlson, and I appreciate her bravery, and her transformation. Carlson confesses that she feels a little shamed by my essay, and a little resistant, but determines to explore her own resistance:

A selfish and quite bratty reaction to the lack of sympathy I receive for my own sensitivities, both those diagnosed and those merely evident? Guilt over the multiple cleaning products in my kitchen and my dissatisfaction with the baking-soda-and-orange-peel solution to everything?

She admits she is ashamed of her attitude, and says that the essay carries an important message about what we are doing to our habitat. “The canaries, the butterflies, Lunden, are all warning signs.”

I was so happy when I read this blog. Carlson is doing exactly what I hope the readers of this essay will do. She is recalibrating her preconceptions and recognizing something important about what we are doing to our environment, and therefore to ourselves.

I came across that blog post when I was preparing for this interview, but I had a very different reaction to it. I thought the blogger harped on about how she wanted to be able to distinguish the truly sick from the whiners and fakers. My impression was that she judged you to be a sympathetic person with MCS because she was so captivated by your writing, but that she still views other people with MCS with disdain.

It’s interesting that we had such different responses to that post. When I started reading it, I had expected to come out thinking like you. I had expected to go on a journey of discovery and change with the author, so I was disappointed by her self-professed “brattiness.” I’d love to see your way, though. Care to try to convince me?

It’s interesting to me, Sharon, that we had such different experiences of this piece. I can’t deny the likelihood that because Carlson is directly praising my work it softens me toward her perspective. I can see the sentence that you perhaps find most objectionable. It is when she wonders if part of her defensive initial response to “The Butterfly Effect” is due to “overexposure to the special snowflakes of the world, which makes it difficult to distinguish between those with serious issues and those who use sensitivity as an excuse for everything from irresponsibility to rudeness.”

You see…. I likely just floated on by that statement because she was not including me among those “snowflakes.” As I look at this more closely, I am curious about her experiences with sensitive people, and particularly her experience of rudeness, and what does irresponsibility mean, exactly, in this context?

Yes, a lot of judgment there. But I know if I didn’t have this illness, I would be judgmental, too. I would think MCS is a psychological problem, not a physiological condition. All a writer could want from such a reader is a beginning of a transformation.

I suspect that Carlson will be more open-minded toward the next chemically sensitive person she meets—even if she is still triggered by “the special snowflakes of the world.” I find it intriguing that she alludes to her own sensitivities and the lack of sympathy she receives for them. It makes me think of the Jungian idea of the shadow self—the part that we have learned to hide because it’s not socially acceptable in our families or our culture. Of course, it’s not socially acceptable to be sick. We challenge people to face something about life that makes them uncomfortable. Our illnesses challenge us in the same way.

What effect have these honors had on you or your writing process?

I don’t know that it has changed my writing or my writing process, but it has bolstered my trust in my approach and in my competence as a writer. Also, now when I tell people I am a writer, I feel legit. That is pretty awesome. Getting this essay published, and to such accolades, was like my coming out ball as a writer. It has begun to open some doors, as well, which is nice.

  

This past year, 2012, was a very big year for you—not only did you receive one of the highest honors for a North American essayist, but in October of 2012 you were also named Maine’s 2012 Social Worker of the Year by the Maine Chapter of the National Association of Social Workers. Can you tell me what you did to earn that award? 

When Governor Paul LePage and his Republican-dominated legislature wanted to strip MaineCare coverage from 65,000 low-income Mainers, I worried for my clients, and for all the people across the state whose lives would be impacted by these cuts. I emailed my legislators and told them my concerns, but that just didn’t feel like enough. I felt helpless.

One day, it dawned on me there was something more I could do. I decided to write a petition. I called it “Save Healthcare for Low-Income and Disabled Mainers,” and it grew slowly, and then it grew quickly. It was a little like playing the slots every time I hit the refresh button on my computer. People passed it around through email and Facebook, and three weeks later my petition had almost 10,000 signatures.

I hand delivered the petition—which was about four inches thick—to Representative Patrick Flood, who was the Chair of the Appropriations Committee. I had never before been to Augusta. Rep. Flood sat down with me for a few minutes and listened to my concerns.

There was a loud outcry against these cuts, in addition to my petition, and in the end, far fewer cuts were made. Another legislator, Rep. Jon Hinck, told me he had no doubt my petition made a difference.

I think we, the people, have let go of the reins of our democracy. We think we don’t have any power. But when we band together, we have great power. The way to take our country back is for each and every one of us to get involved in some way.

Since we started this interview you’ve taken on another activism project related to healthcare in Maine. This is an issue that you’re trying to get people to mobilize on now to contact their senators and representatives. What’s going on? What can people do to support the effort? And how did you get involved?

Well, Sharon, it’s all still part of the same project. Over 8,000 of those people who signed my petition to save MaineCare are still signed up to receive email updates from me. It’s a writer-activist’s dream! An audience of 8,000-plus! So because I have that audience, I feel a responsibility to keep people informed and to inspire them to act.

Even with Democratic majorities in Maine’s House and Senate, with our tight budget and our veto-happy governor, healthcare access in Maine continues to be at risk. Right now, LD 1066—which would accept federal money to provide health insurance to 69,500 low-income Mainers—just passed the House and the Senate. A similar bill was already vetoed by Governor LePage, and we may not have enough Republican support to get the two-thirds majority we would need to override the governor’s veto. So I am asking people to contact their legislators—especially if their legislators are Republicans—and tell them why it is so important to accept these federal funds.

People can find their legislators by clicking here. And they can find a sample email here at the Cover Maine Now website.

                                                                                 

Readers who would like to be kept apprised of developments related to healthcare access can still sign my petition—it’s not too late—which will get them on my mailing list. They can find it here. 

In your acceptance speech for the social work award, you encouraged others to contact legislators, write letters to the editor, run for office, and conduct other forms of advocacy. How does activism fit in with being a social worker?

It’s in the social worker Code of Ethics that we challenge social injustice. If all of us did that, I believe the world would be a better place. We have to hold legislators accountable. That means all of us. Not just social workers. Everyone. This is not a time to be complacent. Complacency is what has gotten us into this mess, and strong political action will get us out of it.

What gives you hope?

The Butterfly Lady—even now that she is deceased—gives me hope. When a monarch habitat was threatened, she rallied a town to vote for an increase in taxes so they could buy the property and turn it into a sanctuary.

Monarch waystations give me hope, and so do all the people who are fighting to make the world a better place.

And taking action gives me hope. I don’t want to stand helplessly by.

Where do you find meaning in your life?

At the height of my illness, I struggled terribly with depression. For years and years, I used to wake up in the morning and wonder what the point of it all was. What was the meaning of life? What was the point of getting up in the morning? I was looking for a big answer. But what I’ve found, since the depression has (long) abated, is that the meaning is in the small things.

The other morning in the car on my way to the park with my dog, Mabel, the song “White Lightning,” came on the radio. I used to be in a band that covered that song, and it felt familiar in an especially nostalgic way. So I sang along, and the way George Jones sings, “Whew! White lightning!” is just so silly, and it was so fun to sing along, suddenly I noticed that I was happy. Moments like that—small moments—give life its meaning.

When you get overwhelmed by the big things, by all the things that are going wrong, you have to reconnect to the small things, the things that make us human. Like many people, I was devastated by the shooting at Sandy Hook. One afternoon, as I was driving to a meeting feeling very dark about the world, I listened to a podcast of This American Life. In it, a young Somali woman was practicing her English so that she could go by herself into a coffee shop and order a cup of tea. An American woman was helping her. We hear her practicing nervously, we hear her go in and have to repeat her order, twice, and then we hear her celebrating her success with her American friend.

When I heard that story, something in me filled up again. Such a small story. But such a human story. That’s what it’s all about. It’s all about connection. Nothing else. Connection with ourselves, connection with others, connection with all living things, connection with All That Is.

URGENT: Call Legislators Today for Health Care for Low-Income Mainers

This urgent call to action is from Jennifer Lunden, healthcare activist, and Maine's 2012 Social Worker of the Year. Please make these calls TODAY, yes Sunday, to ensure that the 70,000 low income Mainers get health insurance this year. Information below from Lunden and Maine's chapter of the National Association of Social Workers.

----

There is a NEW bill to bring those federal funds to 70,000 low-income Mainers, and it's going to vote on Monday. We are hoping this one will be less objectionable to Republicans, and we need you to call your legislators at home this weekend. Legislators expect to be called at home, and this is urgent. Please read the below, from Susan Lamb, the executive director of the Maine chapter of the National Association of Social Workers for more information.
And thanks for your help.
Lunden

 ---- 

THIS Monday the Maine House of Representatives will be voting on an important bill LD 1066, An Act To Increase Access to Health Coverage and Qualify Maine for Federal Funding. 

This bill will provide health care coverage to nearly 70,000 low income (at or near the Federal Poverty Level) Mainers who need it and all of the money for it is coming from the Federal government for the next three years. In years 4 through 10, 90% of the money is coming from the Federal government. 

If Maine FAILS to pass this bill, or the Governor vetoes it and the veto is not over-ridden by 2/3rd of the House and Senate, it means that OUR federal tax dollars will go towards paying for this expansion in the 47 states who have embraced it, and not our own. NASW Maine thinks that this is not so good for Maine Federal taxpayers, at any income level. 

The legislation would reduce overall health care costs, save millions of taxpayer dollars being spent treating uninsured people in emergency rooms and get hard working, low-income Maine families access to the life saving screenings and treatment that they need. 

Your Representative needs to hear from you about the importance of accepting the federal dollars that have already been set aside for our state to cover more Mainers through MaineCare. Please click here to contact your legislator about this important piece of legislation!

Here are further options: 

FIRST, call your legislators at home this weekend. Everyone is at home except possibly the House and Senate Leaders and the members of Appropriations, who are working on the budget. It will rain tomorrow in much of Maine, so that is a great time to “reach out”. 

Maine Legislators EXPECT to be called at home by their constituents, and unless a legislator is a personal friend of yours, stick to those who are YOUR Representatives, please. It is burn out season for them. 

Please also take a quick moment to call your Representative. First look up your Representative at http://www.maine.gov/portal/government/edemocracy/lookup_voter_info then call them at home this weekend to leave a message with your representative urging them to accept federal funds to provide health care to nearly 70,000 Mainers! 

Or, alternatively, on Monday morning, call them at their respective Party offices or at: 

(Deaf, hard of hearing, or speech impaired callers can reach the Maine Relay by dialing 711 or use online relay at i711.com.) 

1-800-423-2900 for the general mailbox. 

House Democratic Majority Office: 207 287-1430 

House Republican Minority Office: 207 287-144 

Be sure to state who you are, what town you are from and why you believe it's important to provide health care coverage to almost 70,000 Mainers. As always, remember that these folks run for an office that pays less than $22,000 over a two year period, so whatever you say, say it nicely (as I’m sure all social workers do).   

Thank you for taking this important step towards bringing health care coverage to the many hard-working Maine families that really need health insurance. Your call this weekend, or on Monday morning can save both lives and money. What a great idea! This must be why 47 states said “yes” to the offer. 

Best, 

Susan Lamb, 

Executive Director 

Maine Chapter, NASW

P.S.  Please click here to get the name and contact info for your legislator if you haven't already gotten in touch with them.

Cover Maine Now! Supporting Health Care, Economic Vitality, and Jobs in Maine

A coalition of dozens of health, civil rights, labor, and other organizations have come together to support the implementation of the Affordable Care Act (ACA) in Maine. Proponents say this step will stimulate $350 million in economic activity and create 3,100 jobs in Maine, as well as providing health care coverage to up to 69,500 Mainers who are currently uninsured.

In an email to a disability group in Maine, Jennifer Lunden explained what's at stake and how Mainers can get involved:

A new coalition of concerned businesses called Cover Maine Now! has been working to bring new federal funds to Maine to provide healthcare coverage to tens of thousands of uninsured Mainers. My agency, the Center for Creative Healing, is a member of this important coalition fighting for health justice.

You can help us out by signing this new petition which will go to your state legislators. Accepting these federal funds will save lives and save money. It's a win/win! 

I am so appreciative of your help last year fighting devastating cuts to MaineCare. This is an opportunity to not only restore funding, but to increase it. Thank you for taking action!

The petition, which can be signed and sent from the Cover Maine Now! website, is short and simple. It says

Maine Legislature: Save lives and save money by covering more Mainers!  

Accepting the federal dollars that have already been set aside to cover Maine’s uninsured will benefit all Maine people and boost Maine’s economy.

• More Mainers will have health insurance. 
• Health care costs will go down. 
• More lives will be saved and people will be healthier. 
• Maine’s economy will grow.

I call on you to accept the federal funds set aside for Maine to provide health coverage to more than 69,500 Mainers and save taxpayer dollars by fully expanding MaineCare.

To learn more about this bill intended to bring more money into the state for health care and healthcare-related jobs, visit Cover Maine Now! You'll find fact sheets, media releases, and the petition mentioned above, and other information.

Disability in the News in Maine and Across the US: November 2012 Roundup

The Waterville, Maine Online Sentinel reported that the Maine Human Rights Commission is establishing a mediation program to try to solve discrimination problems more efficiently.

According to the commission's fiscal 2012 annual report, 639 charges were filed, 82 percent of those involving complaints of discrimination in employment; 11.5 percent involving housing complaints; and almost 6 percent were complaints about public accommodation. The report says disability discrimination was alleged in a third of the complaints and whistleblower discrimination was alleged in a fifth of them.

Click here to read the complete story.

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Nine new veterans of the Iraq and Afghan wars enter Congress with the recent elections. The highest profile of these veterans is Tammy Duckworth, a disabled vet who will represent Illinois' 8th Congressional district as a Democrat. Duckworth was a major in the Army in Iraq. She is a double-amputee as the result of a grenade injury while piloting a Blackhawk helicopter. Read more about Duckworth and the issue of veterans in the Senate and House.

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Uncle Sam Wants You to Email Your Doctor

NPR reports that patients with online access to their doctors might be more engaged in making health care decisions. The article states, "A federal law passed in 2009 says that physicians have to start offering their patients online communication, or Medicare will start docking how much it pays them in the future." While initial studies showed that patients with online access made fewer doctor appointments, a larger, more recent study reveals that patients came in more often. However, "the government's intent in requiring doctors to offer online access ... isn't to drive the overall number of office visits up or down, but to improve the relationship between doctors and patients by improving communication." Read or listen to the complete story here.

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Teachers and administrators in Maine are fearful and confused by a new law opposing restraint of disabled students, according to a Portland Press Herald story with the headline, "Maine teachers say new restraint rule leads to assaults by students." The article goes into detail about the issues teachers are having with disruptive students and the fearfulness of the teachers in relation to the new rule. There is very little in the article about the reason the law was implemented -- to protect disabled students from excessive force, restraint, or other abuse.

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The American Psychiatric Association is voting on the revisions to the DSM-5 (Diagnostic and Statistical Manual - Fifth Edition) this weekend. Some possible changes that have people concerned include eliminating Asperger's syndrome and instead categorizing people who previously fit that diagnosis as "mildly autistic." Other changes include adding a form of depression associated with grieving a death or other loss, and -- in an attempt to reduce the overmedicating of children who are diagnosed with bipolar disorder -- adding "disruptive mood dysregulation disorder" among children. Click here to read or listen to the story on All Things Considered.

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The United States Senate is set to vote on Tuesday whether to ratify the U.N.'s Convention on the Rights of Persons with Disabilities. According to the Huffington Post, strong opposition to ratification comes from the extreme right wing, including Republican Senators Rick Santorum and Mike Lee, the latter of whom said he would "do everything I can to block" ratification. On December 2, the Washington Post Editorial Board came out with strong support of ratification, appealing to Republicans to remember that the Americans with Disabilities Act was enacted under George H. W. Bush and that the George W. Bush administration signed off on the UN Convention in 2006. The Post's editorial closes thus:

Today’s Republican senators could do a lot worse than to heed Mr. Dole’s advice. His political career is eloquent testament that heartland conservatism is consistent with enlightened global engagement and a compassionate commitment to civil rights for all — including citizens with disabilities.

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Maine Rife with Baby Boomers!
A Bangor Daily News article opens: "In terms of demographics, Maine is the oldest state in the nation, populated by what the state Office of Aging and Disability Services calls one of the largest concentrations of baby boomers." In response, efforts to grow the 18-44 year old population and to spur economic development are in the works. Read details of these efforts here.

Activist Alert & Breaking News: How YOU Can Support ADAPT Now!

Disability Rights Activists Take Action to Preserve Medicaid & Attendant Care

Pennsylvania Cuts Reflect National Issues; Police Brutality, 83 Arrests in Struggle to Save Medicaid in the Keystone State

by Sharon Wachsler, October 16, 2012

As we posted yesterday, disability rights activists from around the country have converged on Harrisburg, Pennsylvania to convince lawmakers to change course on the devastating cuts to Medicaid that are harming people with disabilities.

The protests and efforts to affect change started on Sunday and continue through Thursday (October 18). Today's activism saw 83 arrests and \police brutality that was captured on video (see below).

Yesterday, Governor Corbett refused to meet with ADAPT, though activists attempted to make headway with other key lawmakers, including Senator Jack Corman and Representative William Adolph, but nothing that led to concrete action or meaningful meetings.

According to Philadelphia independent living center, Liberty Resources, over 300 protesters are involved in the ongoing action.

ADAPT's website describes what's at stake as a national issue because

Pennsylvania was in the process of "rebalancing" its system to more effectively support seniors and people with disabilities living in the community rather than relying on institutional placement. The state had also become a national leader in allowing people with disabilities to manage their own assistance and utilizing Centers for Independent Living in the provision of home and community based services. The Corbett administration has destroyed much of this progress by cutting funding for Pennsylvania's Medicaid home and community based services and implementing sweeping changes to the state's infrastructure for providing home and community based long term services and supports. ... 

ADAPT believes the choice should be clear because the US Supreme Court has determined, in the Olmstead decision, that under the Americans with Disabilities Act people with disabilities have a fundamental civil right to receive community based services and supports from Medicaid as an alternative to being forced into a nursing facility or institution. Furthermore, there is federal funding to make these important changes.

At about 5:45 PM today, police became violent with protesters inside the Dept. of Public Welfare offices in the PA state capitol. ADAPT members posted this video on youtube: Harrisburg Police Assault ADAPT Protesters at DPW

Video description: Harrisburg Police Assault ADAPT Members at the Department of Public Welfare building on October 16, 2012. A four-minute video of many people, most in wheelchairs, at least one blind man standing up, and many male police officers in an enclosed indoor space. There are glass doors that the police seem to be trying to close or pull people through. You can see an unidentified woman get pulled by her pony-tail over a wheelchair and onto the floor, and there is screaming, and then police remove the hat of Joey Tate and also pull him in through the doors by his hair as ADAPT members shout over and over "Nonviolent!" and "No violence!"

The press has slowly been picking up the story, including written and video pieces last night by CBS affiliate WHPTV CBS21 News and today by PennLive.com.

What You Can Do to Help

Options for Those In PA and Elsewhere to Make a Difference

For those out of state and CAN'T get there in person, here are the most useful actions you can take to make a difference:

• Follow National ADAPT and PA ADAPT on their web pages, Facebook, and Twitter. Share their tweets, status updates, pictures, and videos! Ask others to get involved and spread the word, make phone calls (see below), and lend support in person, if possible. (PA ADAPT on FB and PA ADAPT on Twitter.)
• If you can make telephone calls, call Pennsylvania Governor Tom Corbett and tell him to work with Pennsylvania ADAPT to implement Community First Choice. Call him at 717-787-2500 (voice). You can also call Dept. of Welfare Secretary Gary Alexander at 717-787-2600 and tell him to meet with ADAPT.
• If you can't call, email Secretary Alexander and Governor Corbett.
• Pam Auer of Central Pennsylvania ADAPT urges, "Try to do the same thing in your state. Encourage people to support CFC [the Community First Choice option] -- in Pennsylvania and every state across the nation. This will mean more funding and flexibility in every state."
• Savannah Nicole Logsdon-Breakstone, a member of Occupy Pittsburgh and a supporter of PA ADAPT who is not normally able to get transportation to ADAPT events suggests some creative ways of bringing attention to the issue: "Share the messages that National ADAPT have been tweeting/sharing. If you can call, call the numbers they list. Take photos holding signs of solidarity, and make videos about why Medicaid is important -- why it matters in your life. When you share photos/videos, tag National ADAPT and PA ADAPT and write what state you are posting from."

If you CAN make it to Harrisburg tomorrow (October 17) or Thursday (October 18), that is very helpful!

You do not have to have experience as an ADAPT protester! Everyone is welcome to help! Here are some ways to be useful:

• Show up! Especially if you can come before or during the rally tomorrow. MY MEDICAID MATTERS Rally, scheduled for October 17th, 2012 , Capitol Building, Fountain Entrance, 1:00 pm, rain or shine. If there is inclement weather, we will be meeting inside at the Main Rotunda at 1:00 pm.
• Auer says, "For the next two days, being there, being another voice, a body" matters.
• "If you're near the train/bus station (Amtrak/Greyhound), directing people how to get to the Capitol is very helpful. Direct them to the Fountain side (the Commonwealth side) because there will be a rally at the fountain." (See below.)
• The weather has been cold and the days have been long. If you can bring warm gear (blankets, sleeping bags, etc.), hot food and drinks, that will also be helpful. As always, brings signs, bring your stories, your passion. Be ready to listen to instructions from ADAPT leaders. Bring your phone, camera, video cam to document what happens and to spread the word.

The Commonwealth of Pennsylvania has already dropped tens of thousands of children from state Medicaid and cut attendant hours of adults on the PCA program, which will mean disabled citizens ending up in institutions instead of staying at home. Logsdon-Breakstone says, "I'll be there tomorrow and bring the board of Self Advocates United as 1 (SAU1)."

"My Medicaid Matters" Rally Wedneday, Oct. 17, Capitol Building, Fountain Entrance, 1:00 PM rain or shine. (If bad weather, meet inside Main Rotunda). For more info, see PA ADAPT Facebook page.

Please spread the word and get there if you can!

Why should you come to Harrisburg? This legislative session may fundamentally change “Medicaid As We Know It” in ways that we won’t like unless we tell them what we want in any reforms they propose. NOTHING ABOUT US WITHOUT US! We are beginning to see people returning to institutions. We continue to watch the dismantling of one of the country’s best attendant care waivers and the destruction of small, effective community providers. Community Mental Health services are disappearing, and the future of these services are in jeopardy, becoming almost non-existent. When Medicaid is reformed, we better be at that table.

ADAPT spells out ten demands. Governor Corbetts administration must develop an Olmstead plan which does the following (further details on each item are on the ADAPT website):

1. Engages ADAPT, the state's extensive network of Centers for Independent Living, other disability-led advocacy organizations and legal advocates in the development and monitoring of the plan and its individual components 
2. Shifts Medicaid funding for long term services and supports so that at least fifty percent of those funds support home and community-based services by 2015 
3. Selects and implements the Community First Choice Option 
4. Establishes specific benchmarks and regularly provides public reporting on the state's progress in achieving these benchmarks 
5. Assures that people with the most significant disabilities receive the services and supports they need to lead an independent and integrated life in the community 
6. Changes state rules to allow attendants to perform health maintenance tasks for people who need them as a long term service or support so that individuals who need this assistance can live independently in the community 
7. Leverages the state's network of Centers for Independent Living and other non-profit disability-led providers committed to the independence and integration of people with disabilities 
8. Establishes Medicaid rates that support a living wage for attendants and sustains the community-based organizations that assist people in living independently 
9. Restores the funding systems that local counties use to support mental health and developmental disability programs 
10. Establishes leadership within the state who truly supports home and community based services as an alternative to institutionalization.

What else can you do to help? Share this article! And comment here and on Twitter about why #MyMedicaidMatters to you!

Mainers with Acquired Brain Injury Tell Their Stories

In the past month, the recently established Acquired Brain Injury Advisory Council has held three hearings around the state of Maine to "assess whether [people living with brain injury] are getting the help they need," according to a story by Maine Public Broadcasting Network.

An estimated 7,000 Mainers live with the long-term effects of brain injury. While most people who experience some form of brain injury recover, others -- either because their injury was severe or for unknown reasons from seemingly less severe injuries -- experience difficulties with memory, organization, concentration, or issues like walking and talking.

A major theme that emerged at the hearings was the need for better infrastructure (there are just nine rehab clinics in the state and long waiting lists) as well as more education and awareness. Medical professionals need to learn to better recognize and treat long-term effects of concussion and other brain injury and the general public also needs to know more.

Troy Morgan, of Farmington, has had three separate instances of brain injury in his life and says, "We're normal people, but we do have different ways of learning." He says lack of transportation and understanding by employers has made finding work difficult.

Click here to read or listen to MPBN's story on the brain injury hearings.

Free Webinar on Reducing Inequities in Breast Cancer

Breast Cancer Action is offering a free webinar on Wednesday, August 29 and Thursday, August 10, on inequities in breast cancer care.

Our focus will be how race-related barriers like language, culture, discrimination and a history of mistrust of the medical system radically inform healthcare experiences and serve as a contributor to breast cancer inequities.

More information on the webinars, including registration information, is available here.

BCAction is a grassroots, feminist organization devoted to ending the breast cancer epidemic. It has a strict corporate funding policy that allows it to be independent of corporate interests that help support the breast cancer epidemic. For example, BCAction advocates against "pinkwashing" and against carcinogens and chemicals in commonly used personal care and household products. It believes breast cancer is a social justice issue, as well as a health issue. Find out more about BCAction's missions and values here.

Follow BCAction on Twitter at @BCAction and on on their Facebook page.