Saturday, September 20, 2014

Senator Tom Harkin introduced Bills to Address Economic Access for People with Disabilities

as shared by United States Access Board 

Senator Tom Harkin of Iowa recently introduced bills in the U.S. Senate to promote economic independence for people with disabilities. The bills address access to housing, transportation, and exercise and call upon the U.S. Access Board to develop new accessibility guidelines and standards in each of these areas. They are based on findings from an investigation by the Senate Health, Education, Labor, and Pensions (HELP) Committee into economic and employment issues faced by people with disabilities.
"To address the economic barriers Americans with disabilities still face, I am introducing three new bills as part of an 'Access for All' agenda to help them achieve the economic success necessary to be independent and lead full and fulfilling lives in their communities," stated Harkin who chairs the HELP Committee. "Today's report makes clear that even as more people with disabilities seek to enter the workforce, there are still too many barriers preventing them from becoming economically independent. When these Americans are not part of the workforce, they are much more likely to be stuck in poverty with no way of getting ahead."
The "Universal Home Design Act" would require certain accessibility features for single family homes and townhouses that are built or purchased with federal financial assistance. These include universal design features that would be established by the Access Board to ensure access to entrances, interior doors, environmental controls, and at least one indoor room, bathroom, and kitchen space. The bill also would create the Office of Accessible Housing and Development within the Department of Housing and Urban Development.

The "Accessible Transportation for All Act" would require access to taxi services and ban discrimination based on disability by taxi companies and drivers. It would authorize competitions to create affordable and accessible taxi and car designs, require states to develop strategic plans to increase the availability of accessible cabs, direct the Access Board to issue accessible taxi standards and service standards, establish a new tax credit for access improvements undertaken by taxi companies, and create an Accessible Taxi Board at the Department of Transportation.

The "Exercise and Fitness for All Act" would require access to exercise and fitness equipment at gyms, heath clubs, colleges and universities, and other facilities, including treadmills, step machines, stationary bikes, rowing machines, weight machines, and circuit training and strength equipment. The Access Board would be tasked with developing new accessibility guidelines for such equipment within 18 months of enactment.

According to the HELP Committee report, people with disabilities often cannot participate in the workforce due to a lack of access to reliable transportation and to affordable housing, and they continue to report discrimination in the workplace, including wage inequality. The findings also address other economic issues and barriers faced by people with disabilities.

Further information, including a summary of the introduced bills, is available on the Help Committee website.

Friday, September 19, 2014

Disability Rights Consortium Webcast Sept 24th - focus of this meeting will be on Charter Schools

The next meeting of the Disability Rights Consortium will take place on Wednesday September 24th from 9:30-11:00 at Equip for Equality (20 N. Michigan, Suite 300).  

The focus of this meeting will be on CHARTER SCHOOLS.  Our speaker will be Charlie Wysong, a Skadden Fellow and Equip for Equality Staff Attorney whose fellowship is focused on students with disabilities in charter schools.  

A captioner will be available at meeting.  If you need any other accommodations to participate in the meeting, please contact me by Friday September 19th

The meeting will be webcast on  Just click on “Calendar” and then click on the link for the Consortium meeting to access the meeting remotely. 

Please forward this meeting announcement to others who may be interested in this issue.

Our October meeting will be on October 22nd with Laura Paul, the Chief of the Illinois Attorney General Disability Rights Bureau, speaking about the work of her office. 

The meeting is eligible for 1.5 hours of Continuing Legal Education credit for Illinois attorneys.  

Chicago Athlete Mary Kate Callahan hoping to participate in the inaugural paratriathlon at the 2016 Paralympics

Great article in Chicago Athlete Magazine
(article starts on page 33 of the magazine)

For Previous posts of Mary Kate Callahan journey: CLICK HERE 

Thursday, September 18, 2014

Home caretaker Latesha Miller of Chicago Charged With Stealing From Elderly Woman, Hospice Patient

Chicago Sun-Times Media Wire | Sept 18, 2014
(STMW) – A Chicago woman who worked as caretaker allegedly stole from two patients — including a woman living her last days in hospice care — and was ordered held on a $300,000 bond Thursday.
Latesha Miller
Latesha Miller, 37, was working for a home healthcare agency when she stole two checks from a Winfield woman in her care, according to a statement from the DuPage County state’s attorney’s office.
Between Aug. 19 and Aug. 21, Miller made one check out to an acquaintance in the amount of $499.50, prosecutors claim. The friend cashed the check, kept $200 for herself and gave the rest back to Miller.
Miller allegedly wrote a second check to the friend in the amount of $6,856, but the friend could not cash it because the account had been frozen, prosecutors said.
The victim was a woman receiving hospice care in her home, and has since died, authorities said.
Miller is also accused of stealing a credit card and several checks from an 86-year-old woman living at the Spring Meadows senior living facility in Naperville in August 2013, prosecutors said.
At the time, Miller was working as a certified nursing assistant at the facility. She used the victim’s credit cards to make personal purchases, and made unauthorized deposits into her own bank account from the victim’s checking account, prosecutors claim.
Prosecutors also claim Miller also tried to open up lines of credit using the resident’s personal information. The resident’s daughter called police after noticing discrepancies in her mother’s bank account, authorities said.
“Our elderly and those who require special medical attention deserve not only our respect, but also whatever care, comfort and support they need to live comfortably,” State’s Attorney Robert Berlin said.
“The very idea that Ms. Miller thought that an elderly woman and a woman who was living her final days in her home on hospice care would be easy targets is revolting.”
Miller, of the 7300 block of South Wolcott in Chicago, is charged with felony counts of continuing a financial crimes enterprise, aggravated identity theft, financial exploitation, financial institution fraud, forgery and theft, the state’s attorney’s office said.
She will next appear in court Sept. 29 for arraignment.
(Source: Sun-Times Media Wire © Chicago Sun-Times 2014. All Rights Reserved. This material may not be published, broadcast, rewritten, or redistributed.)

In Chicago 'Right-To-Die Conference' draws Protests

as reported by Bob Roberts for WBBM News (CBS)| Sept 17, 2014

(CBS) – Chicago - This week is the focus of the ongoing controversy over the right to die.
Advocates for assisted suicide from around the world are meeting in Streeterville, while opponents are protesting outside.
“It has to be a very personal decision based on the medical and ethical circumstances,” says the “godfather” of the physician-assisted suicide movement, Derek Humphry.
Humphry said he sees progress “bit by bit” toward implementing laws similar to those on the books in Oregon, Washington and Vermont. Court rulings in Montana and Wisconsin have effectively given doctors the right to work with terminally ill patients who wish to end their lives.
Outside of the Embassy Suites Hotel, at 511 N. Columbus Drive, a persistent group of protesters have staged a sit-in. They claim to represent groups from across the country and beyond but are united for the conference as the group “Not Dead Yet.”
Its CEO, Diane Coleman, said that what people considering assisted suicide need is care, not a lethal prescription.
“They deserve to have the support, whatever treatment they need for depression, whatever home care they need so they don’t feel like they’re a burden on their family,” she said.
Coleman contends that many of those who eventually opt for assisted suicide do so because they don’t get the care and believe they are a burden.
Humphry said he believes the deciding decision for most is pain, and said the Oregon, Washington and Vermont laws specifically exclude those who seek lethal assistance merely because they are elderly or handicapped.
Coleman warns of a “slippery slope” that could lead to euthanasia of the unwilling, and says it is already being done in some European nations. She says even in those states that now allow physician-assisted suicide, there are no independent outside monitors present to make sure that is what the patient wants.
Proponents say that laws in the three states require two doctors to sign off on paperwork for those who seek assistance in dying.
“It’s an individual call of the person, not a judgment that anyone else can make,” said Frank Kavanaugh, a board member of the host group Final Exit.
The meeting of the World Federation of Right to Die Societies is meeting in the United States for the first time since 2000, when it met in Boston. Some of the protesters, including Coleman, said this may be their last chance to debate the issues with proponents.
“I barely can travel any more. I’m getting too old,” she said. “I did it because I have to.”
Proponents remain equally committed.
“This is the ultimate personal and civil liberty, the right to choose when and how to die at the end of your life,” Humphry said.
The conference runs through Saturday.

Press Release: Disability Rights Activists to Protest International Euthanasia Group Meeting in Chicago

September 17, 2014   
posted on   by 

The disability rights group Not Dead Yet announced today that it would lead a three-day protest vigil against the World Federation of Right to Die Societies during the Federation’s biennial meeting being held in Chicago. The American group Final Exit Network is hosting the meeting, which runs from September 17-20 at the Embassy Suites Chicago. The group has scheduled a rally to open the protest vigil at 511 North Columbus Drive on September 18 at 12 PM.
”We are here to contradict the message of these groups that it’s better to be dead than disabled,” said Not Dead Yet president Diane Coleman of New York.
The meeting is being hosted by the Final Exit Network, an American group known for its use of “Exit Guides” to instruct and assist people with “irreversible physical illness, intractable pain, or a constellation of chronic, progressive physical disabilities” to kill themselves using “Exit Bags” filled with helium.
The 2012 PBS documentary, “The Suicide Plan,” included statements and video in which Final Exit Network leader Ted Goodwin admitted and demonstrated holding the person’s arms down to prevent them from pulling the Exit Bag off of their head.
“This is a collection of reckless suicide fanatics,” said John Kelly of Second Thoughts Massachusetts, whose group was instrumental in defeating assisted suicide bills and a referendum in that state.
The World Federation of Right to Die Societies was organized in 1980 to bring together the various groups in Europe and Anglophone countries which promote euthanasia and assisted suicide. The Federation last met in the United States in 2000, when it was also protested by Not Dead Yet in Boston.
“These are the people that we have seen in the news, people who condoned the suicides of the Belgian twins who were losing their sight, or of the woman who was afraid she would not be able to see a stain on her shirt.” said Amy Hasbrouck from the Canadian group, Toujours Vivant/Not Dead Yet, which is working to defeat Canadian initiatives that will be promoted at the conference.  Hasbrouck and other Canadians will be joining the Chicago protest vigil.

5 Lesser-known things about being Blind

article by Emma Tracey for the BBC News | Sept 17, 2014

There are a small number of questions that blind people seem to get asked regularly. But here are five lesser-known things about blindness from those who know.

Can blind people hear better than sighted people?
There is an often-quoted view that a blind person's remaining four senses are heightened to compensate for their lack of vision. In popular culture, sightless superhero Daredevil makes use of his super senses to save the world, and in the film Scent of a Woman, Al Pacino's blind character could tell one perfume from another at the drop of a hat.
Many blind people feel their hearing is no better than sighted people's - it's just that they have to listen more intently to sounds around them. They gauge distance and direction of traffic by ear to avoid being hit by a car, and will tune into announcements at stations to find out which platform their train is on. Sighted people are more likely to focus on the display boards when travelling.
But there is some evidence to support the heightened senses theory. Research at the University of Montreal in 2012 suggests that a blind person's brain does re-wire itself to use the visual cortex. Normally preoccupied with seeing, it's hijacked to improve the processing of other information such as sound and touch.
Many blind people use reflected sound waves to build a mental picture of their surroundings (similar to bats and dolphins) in a process known as echolocation. Most use it all the time without realising, to avoid walking into things. Others claim to be able to tell an object's distance, size, texture and density by clicking their tongue against the roof of their mouth about three times per second and are able to go hiking and cycling without a white cane or a dog.
Can blind people see in their dreams?
Two people asleep in bed, a man and woman
People who were born blind have no understanding of how to see in their waking lives, so they can't see in their dreams. But most blind people lose their sight later in life and can dream visually. Danish research in 2014 found that as time passes, a blind person is less likely to dream in pictures.
The same research says that people who are born blind have more nightmares than sighted people. The theory is that nightmares are mental rehearsals of potentially distressing events, and they can help develop coping mechanisms. For example, blind people in the study reported dreaming about getting lost, being hit by a car or losing their guide dog.
How do blind people choose their clothes?
Over time, many blind people will get a feel for the shape and style of clothes that suit them and they will tend to shop with trusted people.
The fashion-conscious blind person puts considerable energy into ensuring that their outfits match, but technology is often needed for differentiating between colours. A colour detector is a talking gadget which, when pressed against a piece of clothing for a second or two, loudly announces "light olive green" or "dark blue" in a posh English accent. They aren't totally accurate and tend to be used occasionally when sorting laundry and checking items which feel similar.
Blind people have various systems for keeping track of their clothes. Some will sew different shaped buttons on to labels to denote colours. Others might cut the labels in various ways. Some favour the Pen Friend, a barcode reader with labels that can be loaded with information about the clothing, including colour and washing instructions. Others will just try and remember the information or buy clothes that all match.
What do guide dogs actually do?
Contrary to popular belief, guide dogs do not tell their owner when it is time to cross the road and they do not take their owner where they want to go based on an instruction such as "find the shops".
Guide dogs walk in a straight line, always on the left of a person, and are trained to keep an eye on their owner's right shoulder to protect against collisions. They avoid obstacles and stop at kerbs. They know their left from right. Sometimes dogs might lead their owner into overhanging branches because its trickier for them to judge overhead obstacles. It all takes practice. It's a partnership and owners often consider they're driving the dog rather than being led by it.
A guide dog lying down asleep in the middle of a group of people
Unofficially, guide dogs can provide good companionship for isolated blind people. Their presence can help owners feel safer while out and about. And of course, a dog can be a good ice-breaker in a social situation.
How do blind people use computers and smartphones?
Blind and visually impaired people use computer technology in three ways. Some, who can see a bit, can get software that magnifies everything on the screen to a size they can easily read.
Totally blind people have two options. A Braille display can sit underneath a keyboard and provide a tactile version of words on the screen, one line at a time. But less than 1% of the two million people with vision problems in the UK can read Braille, and anyway, the display can cost thousands of pounds.
A far more popular option is a screenreader - software which reads the screen in an intelligent way, using a synthetic voice. Voices are improving in quality all the time but many old-school blind computer users stick to the one that sounds like Stephen Hawking, because it can be understood at a fast speed and because they're used to its pronunciation. After a while, users stop noticing what their screenreader sounds like and crank it up to a speed that's unintelligible to the average person. Some use both Braille and speech together.
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In October, the Disability Treaty Needs Your Help to be called for a vote by U.S. Legislators!

as shared by the United States International Council on Disabilities
*as a sidenote I watched Senator Harkin's sincere, and moving motion on the U.S. Senate for the Disability Treaty to be called for a vote, It was moving and inspirational. For full text
Jim at Ability Chicago

We need your help in October!

Yesterday, Senator Harkin went onto the Senate floor to ask for a vote for the 
Disability Treaty.

Unfortunately, he was opposed by Senator Mike Lee of Utah, and a vote was not taken.

The Senate recesses THIS Friday, and will return November 12th -- for the FINAL session of the year. We need your help to ensure CRPD receives a vote upon the Senate's return!

From now on, if Senators are not willing to commit to supporting the treaty, but are not willing to state specific concerns and work to resolve them with new RUD language, then we must count them as opposed to the Treaty!

The opposition continues to generate calls, and your Senators need to hear from you THROUGHOUT the recess that the community supports this issue.   
CALL often and spread the word!  Attend town halls and candidate forums!

Tell them we will NOT WAIT any longer:
 The time is NOW!! 


to take action!

ADAPT visiting Senator Boozman's office in Arkansas to advocate for the CRPD.

For Immediate Release:                              
Contact: Kevin Locke, U.S. International Council on Disabilities           , (202) 359-6960

USICD President Marca Bristo says because of a well-funded campaign of misinformation waged by the fringe opposition, some senators do not support.

Senator Tom Harkin said this afternoon from the Senate floor, "This is another sad, irresponsible day in the history of the United States Senate."  This statement came after his request for unanimous consent on the Convention on the Rights of Persons with Disabilities or Disability Treaty, was objected to by Sen. Mike Lee (R-Utah), citing  disproved concerns about US sovereignty.
This latest action by the right falls on the heels of the United Nations statement on September 16, that Guyana became the 150th nation to ratify the treaty.  Of the 158 countries that have signed the treaty, only eight have still to ratify it.  Unfortunately-and conspicuously--the United State is one of them.
President of the US International Council on Disabilities Marca Bristo said, "We are tremendously grateful to Senator Harkin for his continued fight to ratify the treaty, alongside more than 800 disability organizations, the U.S. Chamber of Commerce, businesses, veterans groups, human and civil rights groups, and faith organizations.  This is the American mainstream.  It is disappointing that some senators do not support it due to a well-funded campaign of misinformation waged by a fringe opposition.  We are united in demanding that senators put aside politics and irrational, fear-based arguments advocated by extremists on the right." 

Autistic Self Advocacy Network - Webinar Series Fall 2014

as shared by the Autistic Self Advocacy Network

Want to make real community integration a reality in your state? 

Interested in learning how you can use the rule to improve services in your state?

The Autistic Self Advocacy Network, in partnership with NDRN, AUCD, NACDD and the Collaboration for the Promotion of Self-Determination, invite you to join us for a new Tuesday webinar series on the new Home and Community Based Services settings regulation. 

Learn how the new HCBS settings regulation will impact services in your state and how your advocacy can make the difference between integration and segregation for people with disabilities. 

September 30th 1-2:30 PM EST
Topic: Introduction and overview of new CMS HCBS Settings Rule
In the aftermath of CMS' recent regulation defining acceptable and unacceptable settings for Home and Community Based Services, states and stakeholders are now considering how to transition their service-provision systems into compliance with the new CMS requirements for greater integration. This webinar will provide an overview of the new regulation, placing particular emphasis on the role that state level advocates can play in influencing how it will be interpreted and implemented.

October 7 1-2:30 PM EST
Topic: The New HCBS Rule – How Does it Affect Housing for People with Disabilities?!
The new home and community-based service (HCBS) rule from the Centers for Medicaid & Medicare Services (CMS) states that “home and community-based settings do not include nursing facilities, institutions for mental diseases, intermediate care facilities for mentally retarded, hospitals, or any other locations that have the qualities of an institutional setting as determined by the Secretary.”  The new HCBS rule establishes specific qualities that a home must exhibit in order for a state to qualify for federal HCBS funding including being integrated in the community, supporting independence, involving individual choice, and protecting individuals from coercion and restraint. This webinar will walk through these specific requirements, the federal guidance, and a step by step analysis of changes that may need to occur in your state.  Speakers will also discuss how the rule aligns with and moves forward the mandate from Congress and the U.S. Supreme Court that states must design and deliver federally funded services in a manner that does not unduly isolate or segregate individuals with disabilities.

October 14th, 1-2:30 PM EST
Topic: Stakeholder Engagement and the HCBS Settings Rule – State and National Perspectives
The new home and community-based services (HCBS) will require significant changes to the Medicaid HCBS program. Such a large change to the program must include robust engagement with individuals with disabilities, their families, and other stakeholders. While the rule requires public comment, advocates are encouraging states to use that public comment period as the minimum, not the maximum, of public engagement. Come to this webinar to learn about how states are engaging stakeholders in the process and how state and national advocacy organizations are organizing to support stakeholders and states in the process.

October 21 1-2:30 PM EST
Topic: Employment/Day guidance
As CMS articulates a new standard for what will and will not constitute Home and Community Based Services, advocates and policymakers are paying close attention to the implication for day and employment services. Many expect that new regulation will have a profound impact on integration in day and employment activities. Join us to learn more about the potential impact and how to influence implementation relevant to employment and day services.

October 28 1-2:30 PM EST
Title: Enforcement and Monitoring of HCBS Rules
Topic: Presenters will discuss strategies for individuals to enforce HCBS rule requirements; and mechanisms for states to monitor compliance with the rules over the long term. Speakers will highlight potential areas where individuals may face issues in implementation of HCBS rules and available advocacy options, such as grievances or appeals. Examples may include: when assessments of need do not reflect the standard of integration reflected in the regulations; conflict of interest or provider qualification standards are not met; and managed care utilization controls discourage fidelity to person-centered planning. Lastly, presenters will offer tips advocates can use to urge states to include monitoring and enforcement mechanisms in state HCBS Transition Plans.


CPSD logoAUCD logo

NDRN logoNACDD logo

Autistic Self Advocacy Network: | Washington, DC 20035

Wednesday, September 17, 2014

Illinois Sen. Biss Visits "Our Place" a Nonprofit with Employment Program for People with Developmental Disabilities

From Left to Right (Margaret Webster, William Johnson, Michael Palmer, Jennifer Vantreeck, Daniel Biss, Sean Waterbury, Chanel Ruiz-Bricco, Annie Fahrenbach, Niki Grzeslo, Matt Mann, Jamie Weller) (Posted by cbricco, Community Contributor)

as posted by the Chicago Tribune, From the Community | Sept 17, 2014
Community Contributor cbricco

September 2014, Wilmette, Ill.] On September 11th, Senator Biss visited Our Place to learn about their new employment program for adults with developmental disabilities. Senator Biss has played a significant role in advancing employment opportunities for adults with developmental disabilities in Illinois, and Our Place is excited to be part of this initiative.

Recently, Senator Daniel Biss sponsored The Employment First Act, which requires Illinois state agencies to work together to make employment for people with disabilities a priority. Biss believes that Illinois residents with disabilities have much to contribute to our workforce, and this law will maximize their opportunities to live and work with dignity.

As of May 2014, only 17% of individuals with disabilities ages 16 and over are employed in the United States. For a growing population, this is incredibly troubling. As of 2000 approximately 1 in 150 children were diagnosed with autism (one of the more prevalent developmental disabilities), while in 2010 this number increased to 1 in every 68 children. This represents not only a tremendous societal and market failure, but also a tremendous opportunity for employing an underutilized but incredibly dedicated and hardworking population.

Our Place's employment initiative seeks to empower participants to be members of their community through meaningful work and social interaction. The central focus of this initiative is to create sustainable business ventures that provide our participants with the opportunity for ownership and meaningful employment. As part of this program, participants have begun to take ownership of their own enterprise by creating high quality soy-based gift candles in a variety of fragrances and colors. The candles will be on sale at The Grand Food Center in Winnetka.

About 'Our Place'
The mission of Our Place is to support teens and adults with developmental disabilities so that they can live meaningful, productive, socially connected lives in their home community. To learn more about Our visit:

Social Security Disability Claims Process - detailed Video(cc) presentation

This video series explains the Social Security Administration disability insurance claims process. It also describes the roles of the different components involved. For more information, visit, call 1-800-772-1213, or TTY 1-800-325-0778.”
YouTube Published on Aug 5, 2014 by Social Security Channel 

Section 508 Best Practices Webinar: Accessibility for Government Communicators (September 30) - RSVP

as shared by the United States Access Board 

The next webinar in the Section 508 Best Practices Webinar Series will take place September 30 from 1:00 to 2:30 (ET) and will cover tactics and techniques government communicators can use to ensure that their projects meet Section 508 requirements. 

Presenters will cover content development for both external and internal communications, common areas where communications projects often run into compliance issues, and how to work with Section 508 coordinators and IT staff on accessibility.

For more details or to register for this free webinar, visit

The Section 508 Best Practices Webinar Series provides helpful information and best practices for federal agencies in meeting their obligations under Section 508 of the Rehabilitation Act which ensures access to electronic and information technology in the federal sector. This webinar series is made available by the Accessibility Community of Practice of the CIO Council in partnership with the U.S. Access Board and eFedLink.
Accessibility for Government Communicators: Tactics and Techniques You Can Use Today to Keep Your Projects on the Right Side of Section 508 Rules
September 30, 1:00- 2:30 (ET)
• Don Barrett, Section 508 Coordinator, U.S. Department of Education
• Britt Ehrhardt, Federal Communicators Network 
• Matt Harmon, Director of Web Operations & Communications, DHS 
• Bernetta Reese, Web and New Media Manager (Acting), First Responder Network Authority (FirstNet)
• Dick Stapleton, Deputy Director, Digital Communications Division, HHS
Moderator: Timothy Creagan, Senior Accessibility Specialist, U.S. Access Board


Note: Instructions for accessing the webinar on the day of the session will be sent via email to registered individuals in advance of the session. Communication Access Realtime Translation (CART) and Video Sign Language Interpreters are available for each session and will be broadcast via the webinar platform. A telephone option (not toll-free) for receiving audio is also available.

Tuesday, September 16, 2014

Pacific Alliance on Disability Self-Advocacy (PADSA) offer technical assistance and training

as posted by the Pacific Alliance on Disability Self-Advocacy (PADSA)

We work to “turbo-charge” statewide Self Advocacy Movements.

We work to “turbo-charge” statewide Self Advocacy Movements.The Pacific Alliance on Disability Self-Advocacy (PADSA) is a project run by the Autistic Self Advocacy Network. We assist self-advocacy groups in California, Oregon, Washington and Montana with technical assistance and training. Technical assistance often means working one on one with a group to make their organization stronger.
We help self advocacy groups assess [study] their strengths and growth areas, develop goals, and then pursue those goals. Most of our work focuses on increasing organizational capacity [a group’s ability to do something]. Topic areas focus on fundraising, building strong leadership, utilizing technology more, and improving communication skills. We also connect groups we work with to funders, policy makers, advocates, and other important “movers and shakers”.
Looking for resources? Our webinarsresource guides, and materials are all on our website. The Bulletin Board is a place where self advocacy groups can share information with each other.
Want to learn more?

Rare Respiratory Illness affecting Children is spreading, a dozen states so far

States with confirmed cases are Alabama, Colorado, Illinois, Indiana, Iowa, Kansas, Kentucky, Louisiana, Missouri, New York, Oklahoma and Pennsylvania

By Mark Berman | The Washington Post | September 16, 2014

The rare respiratory illness affecting children has now been confirmed in a dozen states, the Centers for Disease Control and Prevention reported Tuesday.
Will Cornejo, 13, recovers at a Denver hospital. (Cyrus McCrimmon/Denver Post)
The two newest states with confirmed cases: Oklahoma and Pennsylvania, which join a growing roster of states that officially have cases of enterovirus 68, a rare virus strain that can cause severe breathing problems.
Hospitals around the country are seeing an increase in the number of children dealing with respiratory illnesses. Testing has shown that many of these children are suffering from this enterovirus strain. Enteroviruses are quite common, causing between 10 million and 15 million infections each year, but this particular strain has not appeared very often since it was first isolated in California in 1962.
So far, the other states with confirmed cases are Alabama, Colorado, Illinois, Indiana, Iowa, Kansas, Kentucky, Louisiana, Missouri and New York. There have been 130 confirmed cases, the CDC says, but the number of actual cases is likely much higher.
Public health officials continue to warn that other states are presumably going to join this list, with cases expected to be confirmed in other places where there have been clusters of children suffering from respiratory illnesses. There are suspected cases in Georgia and Michigan. At least two other states — Ohio and Utah — have no confirmed cases yet, but health officials have told The Post they suspect that they have cases of the virus.
The CDC expects that the number of infections is going to drop later in the year. Most enterovirus infections in the United States occur in the summer and fall, so these infections are coming at a typical time for enteroviruses, Anne Schuchat, director of the CDC’s National Center for Immunization and Respiratory Diseases, told reporters.
Only children have been confirmed to have the virus so far, as they lack the immunity that comes from being exposed to a disease, according to the CDC. The virus spreads when an infected person coughs or sneezes. (There is no vaccine, so health officials encourage people to follow the usual common-sense guidelines: Wash your hands, avoid excessive contact with sick people, that sort of thing. Here’s the advice in infographic form.)
As for why it is taking so long to confirm all of the places seeing this virus, that stems from issues with the testing that is required. Health officials say testing for this particular strain can only be done by the CDC and at a certain number of other laboratories. States are sending their specimens to the CDC for testing, which has created a backlog.
Still, even as the number of states with confirmed cases rises, it’s important to remember that these confirmations don’t necessarily mean the virus has suddenly cropped up in these places without warning. Some states told us after submitting specimens to the CDC for testing that they expected it could take weeks to hear results.
And cases may be confirmed after the number of afflicted children seeking treatment has decreased. Consider Children’s Mercy Hospital in Kansas City, Mo., which reported treating nearly 500 children for respiratory illnesses since last month. Mary Anne Jackson, director of the hospital’s infectious diseases division, said she believes between 70 and 90 percent of these children had the rare strain.
Jackson said that the number of children coming in with respiratory illnesses peaked during the latter third of August. “We really were inundated with cases at that point,” she said. The daily number of cases began declining in September.
She said there is no need for public panic, because most illnesses relating to this strain will be akin to a common cold. But as Jackson pointed out, it is still likely the number of states with cases will increase.
“The way this virus spreads, kid to kid, it’s likely if it’s in 12 states it will be in more than 12 states over the next several weeks,” she said last week.

Deaf and Hearing-Impaired Patients Require Special Consideration During a Disaster

article shared from JEMS (Journal of Emergency Medical Services)
Aly Lim, EMT-D, BFA | Amy Updike, AN, BSN, CEN | Andrew Mazurek, EMT-D | Gavin Macgregor-Skinner, BVSc, MSc, MPH, MRCVS | September 15, 2014

Large-scale disasters in the United States such as Hurricane Katrina and Superstorm Sandy created awareness that these events affect all segments of society, including the disabled and, among them, the hearing impaired. The U.S. Census Bureau’s Americans with Disabilities report from 2010 stated approximately 56.7 million people, 19% of the population, have a disability. About 7.6 million people said they experience difficulty hearing, including 1.1 million whose difficulty was severe and 5.6 million who used a hearing aid.1 However, the presence of the deaf/partially deaf community is increasing as both the baby boomers become older and troops come home from war in Iraq and Afghanistan.2
It’s the duty of emergency personnel, government agencies and the individual citizen to ensure they’re prepared for both natural and man-made disasters. However, some jurisdictions are better prepared than others when it comes to handicap-friendly responses in the wake of an imminent catastrophe. Special needs populations and individuals with disabilities are infrequently thought about or mentioned when someone refers to emergency preparedness. A study pertaining to deaf/partially deaf individuals specifically illustrates that out of 55 emergency operation plans reviewed, a little over half mentioned vulnerable populations whereas only 31% specifically mentioned deaf/partially deaf populations in their plan.3
Every emergency situation has a “golden hour,” defined as, “The first hour after the onset of out-of-hospital traumatic injury.”4 It’s the time following an incident when it’s crucial to respond and act decisively to preserve as much life and function as possible. There are special considerations healthcare providers must consider while providing care to individuals during the golden hour who are deaf/partially deaf to ensure they can be properly treated without losing time due to communication barriers.
Information dissemination, responder education, public education and technological advances will allow those with hearing disabilities to be better assisted during times of disaster and, more specifically, during the golden hour.
The U.S. has a long history of overlooking individuals with disabilities. Prior to and including the terrorist attacks of 9/11, disabled individuals weren’t educated like the rest of the population on how they should respond, evacuate and protect themselves during a major incident. This failure led to the Department of Homeland Security (DHS) setting aside grant monies for disability awareness programs in both governmental and communal sectors of
the community.
Although statistics have improved, Hurricane Katrina allowed awareness to be raised once again. Less than 30% of emergency shelters had American Sign Language (ASL) interpreters to assist deaf/partially deaf individuals, and 80% of TVs that projected emergency information in these shelters weren’t able to stream captions.2 As the problems are being identified, the issues are slowly being resolved.
Erie County is only one of five counties in New York state that has an Office of the Disabled (ECOD). According to its brochure, the office was created to ensure that Erie County’s citizens with disabilities would have a direct voice in county government—to make available to such citizens an advocate who could work within the county structure to develop and enhance services. It’s essential that all individuals within the governmental structure have a voice to seek change in order to live a better life.
Along with providing this representation, the ECOD is like a liaison to the lawmakers to ensure topics of importance aren’t merely glanced over without action. The ECOD provides this community with a liaison to both the Erie County Executive’s Office and the Erie County Legislature. Knowing where to turn and what avenues to take will surely help those who are disabled obtain the needed assistance that they require.
Information Dissemination
A study on emergency response communication for vulnerable populations showed substantial evidence that all emergency preparedness and response efforts aren’t effectively reaching vulnerable populations in the U.S, especially those who have barriers related to literacy, language, culture or disabilities. Because much of the emergency information is spread audibly, 48 million deaf/partially deaf individuals face higher risks of injury, death, and property loss as documented in recent U.S. disasters including the terrorist attacks on 9/11, Hurricane Katrina and Hurricane Rita (in the Gulf Coast area), and the 2007 California wildfires.5

One of the most suggested forms of communication for a deaf community is visual, whether as an interpreter on the news, closed-captioning, use of a paging system with text messages or pamphlets. Grant monies can be received through public education programs to help fund the expense associated with obtaining amenities.6
The American Red Cross publishes a booklet titled Disaster Preparedness and the Deaf Community for individuals with a hearing impairment. The booklet begins by making sure partially deaf individuals know the hazards that may threaten their jurisdiction. For example, is their community prone to a hurricane or snowstorm? Knowing the community disaster plans or at least having a general idea will allow individuals to realize how they’ll be notified.
Making a plan for a hearing-impaired individual can be as simple as meeting with family or friends, ensuring escape routes are known, making an emergency wallet card, establishing a plan for a service pet and knowing when to turn off utilities.7
Knowing a disability is present within an individual’s household is a critical piece of information for emergency responders, so it’s important to teach family members and the public about the various communication gadgets that can be used. At the very least, have a small notepad that already has the impairment written on the first page. On the emergency wallet card, be sure it clearly states they can’t hear and has a list of current medications, allergies and an emergency contact. This will save critical time within the golden hour.
Responder Education
Individuals with disabilities are more vulnerable in emergency situations and victimized seven times more than the general population.8 Therefore, responder education is a major aspect of preparing for emergencies where deaf/partially deaf individuals will be. Emergency management has been around for decades, but very rarely has it stressed to the personnel within its organizations the importance of providing accommodations for deaf/partially deaf individuals.
In fact, a recent study by researchers at the University of California, Berkeley, found most state emergency operations plans include no specific mention of deaf people.9
Through disability awareness training, responders can remain professional and know how to act and abide by regulations set forth by the state and federal governments through legislation such as the Americans with Disabilities Act. Through training, certain myths about deaf/partially deaf individuals can also be expelled. Prevalent myths include:
1. All deaf/partially deaf people read lips;
2. All deaf/partially deaf people use sign language;
3. Hearing aids help the deaf; and
4. Deaf people can’t speak.
In reality, only some deaf/partially deaf people read lips. It’s an acquired skill that can take years of practice. Likewise, only some know sign language. This is a separate language they may find just as frustrating to learn as someone without hearing impairment. Hearing aids only help the partially deaf because hearing aids don’t produce sound—they amplify it. Lastly, some deaf/partially deaf individuals can speak, but simply choose not to because it may not be the method of communication that works best for them. By expelling these myths alone, responders may be better prepared to react in an emergency situation.
Niagara University’s First Responders Disability Awareness Training (NUFRDAT) program has been developed to deal with many of the issues that have arisen and continue to arise in the emergency responder realm of the community. Law enforcement, fire service, EMS, 9-1-1 operators and dispatchers, and emergency managers each have their own sections within the training that best guides their encounters with the deaf/partially deaf community.8
In essence, this program requires the responder to take a step back and evaluate the circumstances before acting. For example, during a hurricane, citizens may be required to evacuate. If access to information isn’t readily available to the deaf/partially deaf individual, they won’t know the danger they could face.
A responder must remember that the deaf/partially deaf individual can’t hear warning sirens or radio alerts, as many of our alert systems are only audible. First-responding agencies may arrive at the home of this individual and become frustrated when the resident fails to comply with requests. Not knowing the individual can’t hear and doesn’t perceive the imminent danger could mistake a disabled individual for an insubordinate one. It must be kept in mind that if this person is taken from their home, they may need to bring accommodating equipment (text telephones, video phone, etc.), their service animal and a notepad and pen with them.
When communicating with a deaf/partially deaf patient, the most important thing to do is get the individual’s attention. Speak clearly and slowly, and don’t shout, cover your mouth or chew gum because this will render lip reading useless. Make sure the person speaking doesn’t have a mustache, as that also makes lipreading extremely difficult.10 Eye contact, facial expressions and gestures are extremely beneficial, as well as trying different approaches with fewer words to convey a message. If possible, talk with family or relatives who communicate with the individual on a daily basis.10
Planning Considerations
The emergency management and response aspect of the NUFRDAT program includes planning considerations for sheltering and mass care, registries, citizen emergency response team (CERT), access and functional needs as well as working with all-inclusive committees and Federal Emergency Management Agency Office of Disability Integration and Coordination.8 It’s imperative a disaster isn’t the first time a responder is exposed to someone who’s deaf/partially deaf.
It’s also important emergency drills incorporate deaf/partially deaf people. There’s no substitute for the real thing, and communication between responders and deaf/partially deaf patients can be practiced in a non-emergent setting. It will also give the deaf/partially deaf person a chance to share vital information and feedback about the drill.
It’s critical those involved in emergency preparedness recognize deaf/partially deaf individuals will go where they feel most comfortable during a disaster or emergency. This will surely be a place that has accessibility for them, so sheltering and mass care of the hearing impaired must be considered. Where are they going to sleep? Do we have to bring in ASL translators to effectively communicate? Where can we get a translator during a disaster’s golden hour? Do we have to bring accommodation devices with the individual? Are TVs equipped with closed-captioning available in the shelters and healthcare facilities?
During the golden hour, it may be more realistic to find a relative or friend who can help interpret versus getting an official interpreter on scene. Additionally, if emergency personnel radio ahead to the ED, a professional interpreter (or someone fluent in ASL) may already be at the hospital upon arrival. With regard to access, are all the needs of this deaf/partially deaf individual provided for? Can they know that a special room, announced over a public address system, is where people can take a shower, get food or use the toilet? Posted signage could alleviate this problem entirely.
Registries can be surveyed from the public when planning for an emergency to determine if a deaf/partially deaf individual lives within a jurisdiction. This registry could provide critical information at a time of a worst-case scenario (e.g., the individual broke their arms in an earthquake and responders need to know the patient’s medication allergies prior to rendering care.) The registry can also ensure these people are checked on during minor incidents.
More recently, developments in communication have made alerting those with hearing impairment even easier. In 2013, a team of five students from California State University, Northridge designed software for an Android application called Audio Alert that can interpret audio disturbances such as sirens, smoke alarms, car horns or even crying children, then translate them into flashing lights, vibrations and texts to those who couldn’t otherwise hear them. The free app, now available on Google Play, has not only turned smartphones and other mobile devices into personal emergency alert systems, but also brings attention to the need to design software specifically for the disabled.11
Public Education
Community education is needed to ensure preparedness to disasters when dealing with deaf/partially deaf individuals. Through community education programs, deaf/partially deaf individuals should also be taught to build a survival kit with basic needs and supplies such as food, water and medications. The following can be added: extra batteries for hearing aids or implants, visual alarms, pagers, teletypewriters, car charger for cell phone or pager, portable
battery-powered TV, battery-operated lantern, notebook and pen, and hearing ear service animal identification.6
There’s no better time than the present to talk with and teach a person, especially a deaf/partially deaf individual, how to ensure their own safety during a disaster. Meeting with a state or local emergency preparedness team to ensure effective communication during any emergency, meeting with local television stations to ensure that emergency information will be accessible, and learning about products and services that can help keep their family safe, will undoubtedly ensure the best possible results during and after a disaster.
Technological Advances
New devices and services available to help the deaf/partially deaf in a disaster include: visual alert systems, amplified auditory alert systems, vibrating alert devices, text-based alert systems and telecommunications.6 Visual alert systems such as alarm clocks, fire alarms, doorbells and baby monitoring systems can include strobe lights that go off with an alarm. Amplified auditory alert systems can include phones and hearing aids. Vibrating alert devices can include bed shakers or a vibrating phone to wake a sleeping person. Text-based alert systems notify the individual to a situation through a text message. Telecommunications include videophones to allow communication through signing.
In New York, a product called Next Generation 9-1-1 (NG9-1-1) is attempting to allow individuals with hearing impairments to call 9-1-1 on a videophone and have the call answered by a signing dispatcher. NG9-1-1 will be enabled by an interconnected system of local, regional and state emergency services Internet networks capable of handling text, data, images and video from wireless and digital communications devices.11 Unfortunately, this system is nowhere near complete. The issue lies in the fact that the current dispatch system is analog whereas the new videophone NG9-1-1 system is digital, so the old infrastructure can’t support the new technological requirements, among other issues.7 Despite this, advancing technology is inevitable and will continue to be developed.
More recent technology includes the Urgent Communication System (UCS) available as an application for Android mobile devices. The UCS is a simple menu-like pictogram sheet, and the patient simply points to the pain portion and severity level with a finger to communicate with remote supporters.12 The pictures and keywords help to speed communication and is potentially more accurate as the patient can pinpoint the place, severity and direction of the pain. Currently the UCS can be implemented solely on Android devices, but applications such as this need to be available for Apple iOS users as well and free of charge. Not surprisingly, the UCS was proposed by a partially deaf person.
Those responsible for planning for disasters have the responsibility to educate responders and the public about helping deaf/partially deaf members of the community. It’s through public preparedness that lives and property are saved from disaster’s deadly wrath.
The authors recognize there’s no need to reinvent the wheel when tailoring a response involving this special population, but to instead identify what lessons have already been learned and which should be shared. By sharing this type of information, responders can adjust and adapt their training practices to improve their response and response time to these victims in real-life situations. jems
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8. Niagara university first responders disability awareness training [brochure]. Niagara University: New York, 2011.
9. Fitzgerald S. Gaps in emergency preparedness for hearing impaired raise alarm. The Hearing Journal. 2013;66(3):20–22.
10. Bastian E. Preparing for emergencies with the deaf and hard-of-hearing communities. Oct. 5, 2012. [Lecture.]
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