The Fall 2012 issue of Breath & Shadow, Ability Maine's journal of disability literature and culture, is up now.
This edition's essay is a gripping and heartrending story by Arthur W. Schade, "The Persistent Demons of War: A Personal Story of Prolonged PTSD." Schade reveals that it took him three years to write this essay, and it was time well spent. While reading, I sometimes found myself leaning into my computer screen, my teeth clenched, while other times tears sprung into my eyes or a laugh burst from me.
Schade begins his story as an eighteen-year-old entering the Marines and being swept up in the chaos and confusion of enlistment and training: noise, strange surroundings, and, well, naked male butts!
We went through lines of examinations and stood around for hours, recognizing one another's bare asses before we could learn each other’s names. We did not realize so many of us would remain together in squads and fire teams, building deep-seeded bonds of friendships along our journey. Our initial ‘shock’ indoctrination began immediately at Parris Island; intimidating drill Instructors scrambled our disoriented butts off the bus, organized us into a semblance of a formation, and herded us to the barracks for a night of hell. Following what we thought would be sleep (but in actuality was a nap), we awoke in awe to explosive clamor as the DIs banged on tin garbage can lids next to our bunks, yelling “get up you maggots.” Even the largest recruits trembled. Flooded with anxiety and apprehension, already we were second-guessing our decision to enlist.
Everything changes from literally the moment that Schade stands on Vietnamese soil, revealing a shocking mishap that I had never even known was a danger of war. He describes how just fourteen months in 1966 and 1967 changed him forever and left him feeling out of place among his nineteen-year-old peers when he returned the United States. Yet, for decades he managed to keep his "demons" to himself -- the nightmares, anxieties, and other symptoms of post-traumatic stress disorder (PTSD) -- and "pass," explaining how and why it was so important to him to cope the way he did. Until the option to keep everything under wraps was yanked away by a new war:
When the first Gulf War began in 1990, I sensed the demons bursting from within. No matter how hard I tried to avoid them, I saw vivid images and news coverage of every aspect of the war. The bodies and faces in the media were not strangers anymore. Instead, they were my brothers from a much older and forgotten war. I sought refuge with the Veteran’s Administration and began attending group therapy.
Connecting with fellow vets and PTSD survivors took Schade on a new journey he shares with Breath & Shadow readers. I am moved and grateful for having read his story. I learned a great deal from being able to learn from what Schade witnessed, heard, felt, and did before, during, and after his tour in Vietnam and his time now as a warrior in supporting veterans with PTSD.
Ability Maine posted previously that Senate candidates Cynthia Dill (Democrat) and Angus King (Independent) addressed a forum sponsored by the Disability Rights Center while Charlie Summers (Republican) was absent. The same thing happened at a forum to discuss homelessness on October 11 in Portland -- a forum where the topic of disability was raised frequently.
The event, sponsored by Homeless Voices for Justice and the Preble Street social services agency, included a tour of the facility, a meeting with staff and clients, and a question-and-answer period with the candidates. According to the Portland Press Herald's coverage,
Dill promised to be a strong advocate for spending federal dollars on programs for the poor and those in need, rather than on wealthy and powerful interests that can afford lobbyists. She said she stood up for the poor in the state Legislature and would do the same in Washington.
King focused on the costs to citizens associated with homelessness:
King said he wants Congress to do its job, reduce the federal deficit and stabilize the budget so that affordable-housing programs and other services are no longer in danger of deep cuts.
According to the Portland Press Herald, a member of the audience said that she's stuck in a homeless shelter until her disability benefits are approved, which might take a year. "I cannot survive that long," she said.
Another disabled Mainer, Kenneth Tilley, 61, said he was glad that the candidates saw where he and others slept on cots each night: "No matter where you come from or where you were, everybody in America has a chance to be homeless."
Both candidates, as well as many advocates and homeless persons, criticized Summers for not attending, saying that that was an indicator to them about his lack of care for homeless Mainers.
A collaborative study from the universities of New Hampshire and Maine has found that youth with autism spectrum disorders (ASD) benefited significantly from a family-centered transition services model, with 90 percent of participants finding employment after high school.
Students in the trial were ages 16 to 18. Among the positive findings were that those who participated in the project (chosen randomly) "had significantly higher student expectations for the future, parent expectations for the future, self-determination, and vocational decision-making ability than a control group."
Although it should be no surprise to disability rights advocates that providing individually tailored, person-centered approaches in people's home communities and environments works better than the alternatives, it's heartening to have this supported by research. But what is the Family Centered Transition Project and what do they do? Here's information from their website:
The transition services consist of three components over a 6-8 month period:
Training sessions where families learn practical strategies for person-centered planning, networking, and utilizing a variety of adult service options and resources to design and work towards a positive future beyond high school.
A series of individual planning meetings to plan post-high-school goals, held at the convenience of each student and family, with assistance from a project planning facilitator. The planning results in a family-centered plan with specific goals and an implementation plan. Other family members, friends, and community resource people may participate in one or more meetings as called for by the student and family. The facilitator meets with each student to prepare them for maximum participation in these planning meetings.
Ongoing assistance from a planning facilitator in implementing student plans. This includes career exploration activities with students to investigate career options, such as (a) informational interviews, (b) job shadowing experiences, (c) online or in-person investigation of post-secondary options, and/or (d) unpaid or paid work experiences. Project staff assist students and families to incorporate elements of student plans into their IEPs.
The initial study served 47 young people. The project will continue with three year's worth of funding from the National Institute on Disability and Rehabilitation Research (NIDRR) and will be coordinated in Maine by the Autism Society of Maine and by the Strafford Learning Center in New Hampshire. According to the news article, these organizations plan to work "with schools, developmental service agencies, and vocational rehabilitation agencies to redirect and blend existing transition service funding to support FCTP’s process so more students and families can experience positive outcomes."
David Hagner of the UNH Institute on Disability says that the goal is much farther reaching than just the next three years: “We use grant funds to fill in gaps while we work on developing and marketing the service, with the expectation that it will be sustainable after the three-year project is over.”
We'd love to hear from you if you took part in this project! Is it something you'd recommend to others who are graduating from high school and looking toward work and careers?
A disability law website is running an essay contest for children in New England, grades 2 through 6, on the topic of "how someone with a disability has inspired them." The word limit is 500. The deadline is October 31.
According to the listing in the Bangor Daily News, "In an effort to encourage disability awareness among students, Social Security Disability Help, is hosting our first ever New England Disability Awareness Essay Contest."
Although "inspiration" is not a theme that this disability rights activist generally thinks of as a useful tool for disability-awareness raising -- there is already so much "inspiration porn" in the media about disability -- since role models of other kids and adults with disabilities can be so useful to kids with disabilities, and so scarce, I'm hoping a disabled kid will be the winning writer! Plus, you're never too young to learn to write something persuasive or moving.
Several winners will be selected. A cash prize will be donated to the charity of each winner's choice; they will also each receive a gift card from Barnes and Noble.
For details on the contest, check out this listing, or call Molly Clark at 857-366-7629.
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.
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.
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!"
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.
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.
"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):
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
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
Selects and implements the Community First Choice Option
Establishes specific benchmarks and regularly provides public reporting on the state's progress in achieving these benchmarks
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
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
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
Establishes Medicaid rates that support a living wage for attendants and sustains the community-based organizations that assist people in living independently
Restores the funding systems that local counties use to support mental health and developmental disability programs
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!
Up now at Ability Maine, an essay by Michael Reynolds: "Does Mitt Romney Have a Disability Policy?" We all know now that Romney is friends with Clint Eastwood, the outspoken anti-ADA activist and creator of the pro-euthanasia movie, Million Dollar Baby. But where does Romney stand on disability issues like the Affordable Care Act, Medicare, Social Security, and how does having a wife with a disability affect his perspective? Mike tries to sort through the haze of mixed messages in his discussion of Romney and disability:
Romney does not mention people with disabilities (except for a brief reference to veterans) on his official website, although he devotes a lot of space to his plans to repeal the ACA. When he details his plans to change Medicare and Social Security, he states that his proposed plan will affect neither senior citizens who are current beneficiaries of these programs nor future beneficiaries over 55. He makes no mention of how his plan will affect younger disabled people who receive Medicare and Social Security. He also does not touch on his plans to convert Medicaid into block grants to the states, which could reduce overall Medicaid funding and have serious consequences for both PWDs and senior citizens.
. . . presents an overview of employment status and services for people with disabilities in Maine. It illustrates the types of challenges facing individuals with disabilities who are interested in entering or re-entering the workforce and the importance of support services.
Some notable stats from the snapshot:
More people in Maine are disabled -- 16 percent versus a national average of 12 percent, while 13 percent of working-age adults have a disability
Maine has the fourth-highest percentage of veterans in the nation, and on average, the rate of disability among veterans is higher than among non-veterans, which likely accounts for some of the high rate of disability in Maine.
The unemployment rate of disabled Mainers is almost three times higher (17 percent) than the rate of unemployment of nondisabled Mainers (6 percent)
Forty percent of disabled Mainers are working
Of that 40 percent, most are still underemployed: Only 45 percent of disabled working Mainers have full-time, year-round jobs (compared with 62 percent of nondisabled workers)
The press release indicates that the report is intended to improve employment among people with disabilities in Maine:
Commissioner of Labor Jeanne Paquette described the importance of raising awareness of the employment needs of people with disabilities. “Employers need to learn about the benefits of hiring people with disabilities. Their presence in the workplace sends an important and positive message to customers, and the contributions they make each day are significant.” She added, “With an aging population, Maine will continue to have a need to connect these workers with good jobs.”
The Bureau of Rehabilitation Services of the Maine Department of Labor provides a variety of services to help people with severe disabilities get or keep a job. These services include job development and placement, job training and rehabilitation technology. In fiscal year 2011, 816 people with significant disabilities entered competitive employment and stayed employed for a minimum of 90 days after receiving BRS services.
Several factors influence rates of disability, including general health, social environment, economic conditions, demographic trends, environmental factors, social mores and financial incentives. Another contributing factor is the number of Maine residents who are veterans.
Snapshot 2012 was funded by a federal Medicaid Infrastructure Grant (MIG) awarded to DHHS by the Centers for Medicare & Medicaid Services. The purpose of the MIG grant is to improve competitive employment opportunities for people with disabilities in their communities.
Individuals with disabilities bring strength and diversity to Maine's workforce. Employers interested in hiring people with disabilities or individuals with a disability interested in learning about vocational rehabilitation should contact visit the Employment for Maine website or call the Bureau of Rehabilitation Services at (207) 623-6799.
National direct-action disability rights organization, ADAPT, is marching in Harrisburg, Pennsylvania right now to protest severe cuts to Medicaid. The focus of the action is the governor's mansion to bring attention to state cuts that could severely harm people with disabilities.
Like many other states, Governor Corbett's administration in Pennsylvania has proposed cutting Medicaid as a panacea to address the shortfalls in the state budget. When states cut Medicaid, they not only limit services but they cut the jobs of the people who are paid by the Medicaid funds to provide services, supports and basic health care to the state's citizens. ADAPT is headed to Harrisburg to urge him to work with advocates and the disability community to implement Real Medicaid reform that contains spending while it supports the independence and civil rights of people with disabilities and older adults, and saves jobs.
In any state in the US, registered voters whose disability prevents them from getting to their polling place can vote by mail (or in some cases, online) by absentee ballot. Other allowable reasons for voting absentee in most states include being away (on vacation, in the hospital, on a business trip) or being unable to vote due to work or religious commitments.
However, in Maine, anyone can vote absentee with a paper ballot, as long as they're registered by October 16 (this Tuesday) and request absentee ballots from their town clerks by November 1. (Note: This is a form that is printed out, which might not be ideal for some blind voters; voting by phone was voted in in 2006 but I cannot find information about whether that's still available. If you know, please comment!)
Disability rights advocates in Maine have long been working on making sure that people with disabilities have access to the polls, particularly that people with disabilities such as blindness or low vision, intellectual disability, or any other disability aren't prevented from voting in their community, with privacy and with the assurance that their vote will be counted.
However, for those of us whose disabilities keep us at home or who have disabilities that are not yet accommodated at public polling places (such as multiple chemical sensitivity) or who have unpredictable symptoms, absentee voting is a terrific way to make sure you're able to vote.
Maine state Senator Cythia Dill (Democrat) and former Governor Angus King (Independent) addressed a forum sponsored by the Disability Rights Center on September 27, gaining stories by the Associated Press as well as by local news station WABI. Dill and King are vying for the senate seat left by retiring Republican Senator Olympia Snowe.
Absent from the forum was Republican candidate Charlie Summers, a decision which upset the organizers of the event. Kim Moody, executive director of the Disability Rights Center is quoted in a story about Summers's absence in the Kennebec Journal:
"We're hurt. We've got 125 people with disabilities in the room who came to hear all candidates talk about our issues.... There are a lot of Republicans in there that came because he was coming."
King promised to appoint disabilities advisers if elected and discussed his efforts to get laptop computers to middle schoolers with disabilities. Dill emphasized her work as a civil rights attorney who has promoted the rights of people with disabilities in court and also discussed issues relating to the economy, social security, and the environment, in addition to disability-specific topics.
Both Dill and King indicated that Summers opposes the National Affordable Care Act, while they both support it.
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.
According to the Bangor Daily News, on Friday, October 12, the Disability Rights Center will hold its twelfth annual dinner to honor "outstanding members of the Maine community who have worked to enhance and promote equality, self-determination, independence and inclusion of people with disabilities."
The dinner is at 5:30 p.m. at the Hilton Garden Inn in Freeport.
Awardees include high-school student Christina Kouros, a world-class athlete in Nordic Skiing and track and Chris Hastedt, public policy director for Maine Equal Justice Partners.
For more information on the event or to find out what else the Disability Rights Center does, visit http://www.drcme.org/.
