Archive for March, 2011
Bulletin Board #3
“Too many defective people…”
This week we were shocked when GOP Senator Harty said people with disabilities: including mental illness, mental retardation… and other defective people should be shipped to Siberia to die (click here). He thought this would free up scarce resources and give more room on the planet for valuable people.
Today we celebrate that people all over the world rejected his beliefs, were outraged, signed petitions, and made calls for a retraction. He refused.
Thankfully, he resigned (click here) though he did not take back his comments. He truly believed the world would be a better place without defective people.
Scarcity vs. Capacity
As the recession continues and more people suffer from lack of work, forclosures, and fear of the future–look for increased attacks on the vulnerable people in our society.
“The measure of society is how it treats its most vulnerable people.”
History is full of societies who abused and killed the weak, sick, young, old…. Go to Parallels in Time I if you want evidence from the history of people with disabilities.
As advocates and parents we need to be vigilant. Already, the wealthy and powerful are trying to create additional stigma against people who are “different.” They will continue to create an “us vs. them” mentality. They will attack those least able to defend themselves, contribute large contributions to vote, “buy tribute” and protection.
This is not being emotional or irrational–this is just the history of scarcity, the history of the people we love.
Predictable as flies at a summer picnic.
We are the difference in the survival of the fittest.
Also predictable is that good news helps build capacity, friends, allies and community. Here are a couple capacity building stories:
Oprah and Zach Anner
Zach Anner, a young man with cerebral palsy–“the sexiest of the palsies,” was chosen to host his own TV travel show for Oprah’s network. (click here)
I’m not sure how I feel about Zach’s joke about “the sexiest of the palsies.” Because he is saying it about himself makes a difference, but I still wish he would use People First language and be more sensitive. I can see others using this as an excuse to make “palsy” jokes.
Mom of Zach Anner
It was interesting to see interviews with Zach’s mom (click here). I’m sure her support and encouragement are why Zach is so successful.
March Madness: Villanova’s Student Managers
Inclusion at its best–this is enough to make me want to root for Villanova. AWESOME!
Do you have any comments about any of the above articles? Do you want to suggest any other news stories or links? How could you include people with disabilities in your life, in your clubs, organizations so that we can create powerful stories about the value of all human lives? Any ideas on how we can build capacity and inclusion?
Keep Climbing: Onward and Upward,
All my best, Mary
WE THE PEOPLE….
Each week the Arc (formerly, the Association for Retarded Citizens) reports on what is happening in Washington, DC. The Arc monitors the public policy and legistlative process so that it may advocate for people with disabilities and their families. UCP (United Cerebral Palsy), TASH (formerly, The Association for Persons with Severe Handicaps), and several other national organizations all work together to advocate for our children.
Here is the Arc report for this week: notice the depth of the issues. Also notice most of the news is NOT GOOD for us. Each week there is another detailed report. I am thankful these organizations keep up–that is worth my dues.
This is a difficult time to give our children with autism and other severe disabilities the day-to-day care they need PLUS worry the sky is falling on the support we depend on.
Unless you are independently wealthy, it is a humbling experience for parents to be at the mercy of the system. We need to keep informed and do what we can.
“Think globaly, act locally.”
Subject: The Capitol Insider for the Week of March 14, 2011
The Arc Public Policy
March 14, 2011
Vol 16, Issue 9
Major Events Last Week
Medicaid/Health Care Reform – Kansas Governor seeks to block grant Medicaid and cuts services
Kansas Governor Sam Brownback has written HHS Secretary Sebelius requesting a waiver of the Medicaid maintenance of effort (MOE) requirements and a full Medicaid block grant. The MOE requirements are in place to make sure that states do not drop people from eligibility before the Medicaid Expansion takes place in 2014. Many Republican Governors have asked for the flexibility of a block grant so that they can cut the Medicaid program and not comply with the regulations.
Social Security – DPC staff testify at Senate Appropriations Committee on impact of proposed spending cuts
On March 9, the DPC’s Marty Ford testified before the Senate Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies in her capacity as Co-Chair of the Social Security Task Force of the Consortium for Citizens with Disabilities (CCD). She testified on the Fiscal Year 2012 budget request for the Social Security Administration (SSA) and the impact of possible cuts to the Fiscal Year 2011 budget on the agency’s administrative resources with which to process claims for people with disabilities and seniors. In describing the impact of the House-passed continuing resolution (CR) for the remainder of FY 2011, she stated, “If SSA is forced to furlough employees to address the full $430 million shortfall from the current CR spending level, it will result in nearly a month of furloughs, having devastating effects on service to the American public. In one month of furloughs, SSA would complete 400,000 fewer retirement, survivor, and Medicare claims; 290,000 fewer initial disability claims (with processing time increasing by a month); 70,000 fewer hearings; and 32,000 fewer continuing disability reviews. In addition, H.R. 1 severely cuts funds for vital information technology (IT) improvements and funds to build the critical new National Computer Center, which must be built to protect Social Security electronic information and infrastructure.” Read her full testimony at:
Employment – The Arc submits testimony for the record for Senate hearing on employment of persons with intellectual disabilities
On Wednesday, March 2, the full Health, Education, Labor, and Pensions (HELP) Committee held a hearing, entitled, “Improving Employment Opportunities for People with Intellectual Disabilities.” Lynnae Ruttledge, Commissioner of the Rehabilitative Services Administration, and Sharon Lewis, Commissioner of the Administration on Developmental Disabilities (ADD), testified along with a panel consisting of a state employment agency director, a private employer, a self advocate, and a researcher. The hearing focused on the barriers to employment faced by individuals with intellectual disabilities and offered criteria for and examples of integrated, competitive employment. All panelists strongly supported “employment first” principles. Read The Arc’s statement at: http://www.thearc.org/document.doc?id=2983
Read the hearing testimony and watch the proceedings at:
Health Care Reform – Federal rules released on states waivers for opting out of key health reform provisions
The Department of Health and Human Services (HHS) and the Treasury Department released rules Thursday outlining how states could apply for Section 1332 waivers. These waivers would allow states to opt out of key health reform provisions like the exchanges and individual mandate if they meet certain benchmarks for affordability and coverage. In current law the waivers begin in 2017. However the Obama Administration is supporting moving the timeline up to 2014. Senator Wyden (D-OR) introduced a bill in the previous Congress to make the change.
ADA – Justice Department settles with OR school district in Autism service dog case
The U.S. Department of Justice reached an agreement with the Hillsboro School District in Oregon so that a student with autism may bring his trained dog into the classroom for a trial period. The student’s parents had been trying to get the district to allow the dog to accompany the child for three years. The dog distracts the student when he is about to engage in behavior that could be dangerous. To read the press release about this case, see:
Major Events Ahead
FY 2011 Appropriations – House to vote on another short term funding bill; includes $6 billion in cuts
As soon as Tuesday, the House is expected to vote on a three-week Continuing Resolution (CR) that would cut more than $6 billion from current discretionary spending levels. The Senate is expected to vote later in the week. This latest CR will keep the government running through April 8 after the existing two-week CR expires on March 18th. This would be the sixth continuing resolution since the start of the current fiscal year on October 1. House conservatives are urging their leadership to make deeper cuts and defund the health care law as part of the CR. Negotiations continue between the Administration, House, and Senate leadership on completion of the FY 2011 appropriations.
Long Term Services and Supports/ Health Care Reform – House to hold hearing on the CLASS program this week
The Health Subcommittee (R-PA) of the House Energy and Commerce Committee will hold a hearing titled “The Implementation and Sustainability of the New, Government-Administered Community Living Assistance Services and Supports (CLASS) Program.” The Arc and UCP strongly supported passage of the CLASS program as part of the Affordable Care Act. For more information on the hearing see:
For more information on the CLASS program see:
Abuse and Neglect – New York Times publishes expose of state owned group homes in New York
A front page story on Sunday, March 13, entitled “At State-Run Homes, Abuse and Impunity” exposes significant abuses by direct care workers. It specifically highlights the difficulty in terminating direct care staff with documented cases of abuse and neglect due to the state’s public employee union rules. Read the article at:
http://www.nytimes.com/2011/03/13/nyregion/13homes.html?_r=1&scp=2&sq=disabled&st=cse Readers are encouraged to add their comments to those already posted at:
Please note that you can view previous issues of the Capitol Insider, at thearc.org anytime by choosing “Capitol Insider” under “Public Policy.”
If you have any questions, feel free to contact me at:
Director of Communications and Grassroots Advocacy
Disability Policy Collaboration
Keep Climbing: Onward and Upward
All my best,
What issues do you care about? Is there anything here you will click on a link and learn more about? Do you think it is important to keep up on the national issues?
The Right to Communicate
The world is a hostile place for people who can’t talk with words. Many people don’t listen to body language, signals or even temper tantrums. They often see “behaviors” as something to extinguish instead of a person’s desperate attempt to communicate.
Behaviors = Communication
TASH, an organization of professionals, advocates and parents, passed a resolution written by Bob Williams about the right to communicate: even if it means the person takes a longer time to give their message; uses body language or augmented devices; and especially if they need another person to help facilitate the message. Here is a link to their resolution:
The right to communicate is the means by which all other rights are realized and is, in itself, a basic human right. (TASH resolution on the Right to Communicate.)
Anne McDonald – Right to Communicate
Communication falls into the same category as food, drink and shelter – it is essential for life, and without it life becomes worthless. (Anne McDonald)
I spoke about Anne McDonald in an earlier post on Climbing Every Mountain entitled: Until Eternity: Anne McDonald. Anne was a pioneer who spent 14 years in an institution–mainly because she couldn’t communicate. Read her inspiring story: The Right to Communicate.
The Autism Society, Area 23a and AMC theaters present the documentary WRETCHES & JABBERERS to commemorate National Autism Awareness Month in April.
WRETCHES & JABBERERS TOUR 2011
WRETCHES & JABBERERS is a poignant narrative directed by Academy Award winner Gerardine Wurzburg that follows two men with autism, Tracy Thresher and Larry Bissonnette, as they embark on a global quest to change attitudes about disability, intelligence and communication.
Larry Bissonette is an award winning advocate and “outsider” artist. For more information on the Wretches and Jabberers official blog and examples of Larry’s written and visual art. Check out: Bissonette’s blog and biography.
About W & J name
The origin of the film title, “Wretches & Jabberers” emerged in Finland from conversations by Larry, Tracy and Antti (a friend).
As the group had lunch at a sidewalk cafe, Antti humorously declares the world is divided into “Wretches” – those with limited speech – and “Jabberers” – those who can speak freely.
The next day at the conference, Antti asks the audience to “dispel the darkness around us poor wretches. Take us for real people. Don’t sideline us.”
The video Wretches & Jabberers is about the life-sustaining power of relationships–the personal connections people make through communication. It also vividly demonstrates the power of personal assistants and communication partners.
Official Trailer of W & J
Soundtrack for W & J
About W & J Soundtrack
This limited edition CD features 20 original songs written and produced by J. Ralph in collaboration with award winning artists: Antony, Devendra Banhart, Paul Brady, Bonnie Bramlett, Vashti Bunyan, Martin Carthy, Judy Collins, Lila Downs, Vincent Gallo, David Garza, Ben Harper, Scarlett Johannson, Nic Jones, Norah Jones, Leah Siegel, Carly Simon, Stephen Stills, Ben Taylor and Bob Weir.
All profits from the sale of this Limited Edition Soundtrack helps promote the message of W & J. and people with autism. Click here if you are interested in purchasing the soundtrack.
Sensory Friendly Films
Some people with autism have problems going to a typical theater. Some families are reluctant to take their family member for fear they will make noise and disturb other patrons and they will be embarrassed. Based on a request from a parent, the AMC Movie theatres developed a partnership with the Autism Society to promote sensory friendly film experiences in their theatres.
AMC Sensory Friendly Films:
Auditoriums show new releases without the pre-show advertisements or movie trailers.
* The house lights in the auditorium are turned up,
* The sound turned down.
* Guests are invited to get up, dance, walk, shout and sing.
WRETCHES & JABBERERS will have the AMC Sensory Friendly Films program. For a list of locations near you as well as Larry and Tracy’s speaking schedules (click here).
“We are each an individual in our own way–not a label.”
Life is what people make it but without community it is dark and dismal. . . . The community begins with communication.”
Tracy Thresher, self-advocate and documentary film star who types and speaks to communicate (Wretches and Jabberers).
For additional stories about people who talk in different voices and different ways visit EveryoneCommunicates.org
SPEAK UP! Add you voice in the comments.
Do you agree with Tracy that a “community begins with communication?” Are you a “Jabberer”? Will you participate in seeing the movie, buying the soundtrack, or inviting Tracy and Larry to speak?
Keep Climbing: Onward and Upward.
All my best,