What The Shutdown Means For Disability Services

As the first U.S. government shutdown in more than 17 years takes hold, some programs benefiting people with disabilities will continue with business as usual while others grind to a halt.

The shutdown, which began Tuesday, comes after Congress failed to reach a deal to fund the federal government for the new fiscal year starting in October. Under a shutdown, some services considered “essential” will continue operating while many other government activities will come to a standstill as 800,000 federal workers are sent home until a new budget takes effect.

Here’s a look at how the shutdown will impact programs that people with developmental disabilities rely on:

SOCIAL SECURITY Benefit payments will continue to be distributed on schedule to individuals receiving Social Security and Supplemental Security Income. Local offices will be open, but only to perform select services.

MEDICAID Services provided by Medicaid will largely proceed as usual since an advance appropriation ensured that states receive funding for the program on Oct. 1. However, disability advocates say they are worried that the shutdown could exacerbate payment delays that providers of long-term services and supports are already facing. “The long delays have put many of our affiliates in almost untenable cash flow positions and further delays may cause some to cease Medicaid services,” said Katy Neas, senior vice president of government relations at Easter Seals.

HOUSING The U.S. Department of Housing and Urban Development says it will not be able to provide further funding to local housing agencies during the shutdown. However, most local agencies already have enough money to fund rental assistance vouchers for the month of October, more than half of which help the elderly and people with disabilities.

SPECIAL EDUCATION Schools won’t see much impact immediately, with states receiving $22 billion in special education funds on schedule this month from the federal government, the U.S. Department of Education said.

DISABILITY RIGHTS ENFORCEMENT The U.S. Department of Justice says that civil litigation, which includes the enforcement of disability rights laws like the Americans with Disabilities Act, will be “curtailed or postponed” to the extent possible.

RESEARCH Developmental disability surveillance programs — which track the prevalence of such conditions — will come to a halt during the shutdown, said Barbara Reynolds of the U.S. Centers for Disease Control and Prevention. Meanwhile, the National Institutes of Health will not make any new grant awards for research.

(Author credit and story link HERE)

Emergency Plans Lacking For Most With Disabilities

When disaster strikes, most people with disabilities are unprepared, leaving them vulnerable to injury and even death, a first-of-its-kind survey finds.

Just 20 percent of the world’s people with disabilities could evacuate immediately without difficulty in the event of a disaster, according to the global survey conducted by the United Nations.

Some 6 percent said they would not be able to escape at all while the remainder indicated they could evacuate with varying degrees of difficulty.

For the survey, 5,450 people with disabilities from 126 countries answered 22 questions about their plans in case of a disaster. Preliminary findings were released this week ahead of the International Day for Disaster Reduction on Sunday.

About 7 in 10 individuals polled said they have no personal preparedness plan and only a third said they always have someone available to help them evacuate. Meanwhile, just 17 percent of respondents were aware of the disaster management plan for their city and few had been consulted on their community’s plan.

“The results of this survey are shocking,” said Margareta Wahlström, head of the U.N. Office for Disaster Risk Reduction. “It clearly reveals that the key reason why a disproportionate number of disabled persons suffer and die in disasters is because their needs are ignored and neglected by the official planning process in the majority of situations. They are often left totally reliant on the kindness of family, friends and neighbors for their survival and safety.”

Survey respondents described taking special precautions when concerned about bad weather, with one sleeping in a wheelchair in order to be able to take cover quickly and another who’s unable to hear sirens staying up to watch storm coverage.

Suggestions from those polled included everything from making sure that wheelchair access is considered in emergency evacuation plans to a recommendation that color-coded systems are avoided since they may be unhelpful for color-blind individuals.

Wahlström said the concerns raised in the survey responses will better inform U.N. member states when they convene for the 2015 World Conference on Disaster Risk Reduction in Japan to adopt a new global framework for disaster risk reduction.

(Author credits and story link HERE)

States Divided On ABA Coverage In New Health Exchanges

With state health insurance exchanges now open for business, advocates say they expect plans available in only about half of states to cover autism therapy.

An analysis from Autism Speaks suggests that 26 states and Washington, D.C. will include coverage of applied behavior analysis, or ABA, therapy in insurance plans offered through their exchanges for individuals and small businesses.

Under the Affordable Care Act, insurers are required to provide 10 types of care — including behavioral health treatment — in all plans offered to individuals and small groups starting in 2014. However, determining what exactly falls within each of the required categories was largely left to the states.

As a result, whether or not insurance plans cover autism therapy will continue to depend on which state a family resides in, experts say.

“The devil is in the details,” said Katie Keith, a former research professor at Georgetown University who’s now consulting with Autism Speaks through her role as director of research at the Washington lobbying firm Trimpa Group. “Every plan will say it covers behavioral health treatment but I would encourage families to make sure they know what that means because every state will be different.”

What’s more, Keith warns that even in states where insurance plans cover ABA, there will likely be limitations. Under the Affordable Care Act, insurers cannot impose dollar limits, but will likely cap the number of hours or visits that will be covered, she said.

At present, the Autism Speaks analysis indicates that coverage of ABA will be included in health insurance plans offered through exchanges in Alaska, Arizona, Arkansas, California, Colorado, Connecticut, Delaware, Illinois, Indiana, Kentucky, Louisiana, Maine, Massachusetts, Michigan, Missouri, Montana, Nevada, New Hampshire, New Mexico, New York, Ohio, Rhode Island, Texas, Vermont, West Virginia, Wisconsin and Washington, D.C.

Most of the states identified by the advocacy group are ones that already required autism therapy to be covered by at least some insurance plans within their borders.

Health insurance exchanges across the country opened earlier this month, allowing individuals to purchase coverage that will be available starting Jan. 1, 2014.

By MICHELLE DIAMENT

October 15, 2013

(story provided HERE)

More People With Disabilities Unemployed

Even as the economy added 162,000 jobs last month, the U.S. Department of Labor said Friday that Americans with disabilities continued to struggle in the job market.

The unemployment rate for those with disabilities edged upward in July to 14.7 percent, rising from 14.2 percent the month prior.

This comes as the jobless rate for the general population ticked down to 7.4 percent, the Labor Department said.

Federal officials began tracking employment among people with disabilities in October 2008. There is not yet enough data compiled to establish seasonal trends among this population, so statistics for this group are not seasonally adjusted.

Data on people with disabilities covers those over the age of 16 who do not live in institutions. The first employment report specific to this population was made available in February 2009. Now, reports are released monthly.

Portland, Ore. a hate group threatening People with Disabilities

In what officials are calling the work of a hate group, fliers have appeared in several Portland, Ore. neighborhoods threatening to out people with disabilities who receive government aid.

Portland officials are asking for help from the public after learning of the leaflets found in at least five neighborhoods.

“There are sixteen people in this neighborhood who vote and receive cash disability payments,” reads one of the typed notes signed by “Artemis of the wildland.”

“The names of these people are being posted where they can be seen by taxpayers and the neighborhood can decide who is truly disabled,” the note continues. “Some of us in the neighborhood wish to save this democracy and to stand in the way of those who would destroy it.”

City officials said the fliers were the work of a “hate group” and contained an “underlying tone of violence.”

A spokesman for the Portland Office of Equity and Human Rights told The Oregonian that they have not received any reports of names actually being posted, but are asking anyone who receives or sees the flier to report it.

(see story here)

Family Told To ‘Euthanize’ Boy With Autism

Police are investigating after an anonymous letter suggesting that a teen with autism should be euthanized stunned his family and led to widespread outrage and media attention.

The typed, one-page letter was reportedly sent to Brenda Millson last week in reference to her grandson Maxwell Begley, 13, who has autism and often spends time at her house in Newcastle, Ontario. It has since spread like wildfire through social media.

“He is a hinderance to everyone,” reads the message signed by “One pissed off mother!!!!!”

“Take whatever non retarded body parts he possesses and donate it to science,” says the letter, which claims to be from a neighbor. “Do the right thing and move or euthanize him.”

The note left Begley’s family shaking.

“It made me sick to my stomach to think that somebody hated my son that much and they didn’t even know him,” Maxwell’s mom, Karla Begley, told the Toronto Star. “But they just hated him because he was different. That’s the only reason they had to hate him.”

Since the story went viral, however, the family has been touched by the outpouring of support they’ve received from their local community and around the world, telling Clarington This Weekthat their phone has been ringing off the hook with interview requests.

Local community members have come together to organize events supporting the family and a Facebook group started Tuesday already has more than 2,300 members.

“It restores my faith in humanity that this has really rallied people,” Karla Begley told Clarington This Week.

Local police are conducting a criminal investigation into the matter but have already ruled out the possibility of pursuing hate crimes charges in the case.

“Despite the hateful language used, the Crown Attorney’s office has advised that the content of the letter falls below the threshold for a hate crime. However, there are other Criminal Code issues that are being considered,” the Durham Regional Police said in a statement.

(full story here)

Children with disabilities are being unnecessarily segregated in nursing homes

Federal officials are suing alleging that hundreds of children with disabilities are being unnecessarily segregated in nursing homes in violation of the Americans with Disabilities Act.

The U.S. Department of Justice filed suit Monday accusing the state of Florida of relegating nearly 200 children with significant disabilities to nursing homes who could be served at home or in other community-based settings.

Last September, the Justice Department warned Florida officials of ADA violations after an investigation found that state policies and practices limited access to in-home care for kids with significant medical needs leaving many families with little choice but to send their children to nursing homes. What’s more, the probe identified children who spent years at the facilities before receiving federally-mandated screening to assess whether or not the environment was the most appropriate for them.

Though the state made some changes since being notified of the investigation’s findings, federal officials said that after several months of negotiating, violations remain making legal action necessary.

“Children have a right to grow up with their families, among their friends and in their own communities,” said Eve Hill, deputy assistant attorney general for the Justice Department’s Civil Rights Division. “The violations the department has identified are serious, systemic and ongoing and require comprehensive relief for these children and their families.”

Kids living in nursing homes have limited interaction with individuals without disabilities and are often located hundreds of miles away from their families, according to the federal complaint.

In addition, the suit alleges that the state’s policies and practices put other children with significant medical needs who are currently living in the community at risk of similar institutionalization.

For their part, Florida officials said they have taken steps in the last year to improve an “already strong program” providing services for children with complex medical needs, indicating that more than 1,000 children are now receiving enhanced care services to help them return to or remain in the community.

“Today’s Obama administration action shows that Washington is not interested in helping families improve but instead is determined to file disruptive lawsuits with the goal of taking over control and operation of Florida’s Medicaid and disability programs,” said Elizabeth Dudek, secretary of Florida’s Agency for Health Care Administration, in a statement.

(see story here)

ADA Changes over 23 years

Twenty three years ago on July 26^th The American’s With Disabilities Act was signed into law.  The ADA recognized civil rights for the disabled; reflecting changing societal attitudes  partially brought about by Section 504 of the Rehabilitation Act passed Seventeen years earlier.   On this important anniversary I encourage you to take stock of both how far we have come and how far we still have to go. 

To set the stage, the Oxford English Dictionary notes that the first published use of the word handicap in association  with  impairment was in Lillian D. Wald’s “The House on Henry Street” (1915); Chapter 6 is titled "The Handicapped Child."   The term is not used in the body of the chapter which refers to children with disabilities as “poor things”, “defectives”,  “the abnormal” or simply “them”.  The chapter discusses the need for segregation and hints at sterilization.

“The Board of Education permitted her to form the first class for ungraded pupils, in School Number 1, in 1900, and the settlement gladly helped develop her theory of separate classes and special instruction for the defectives, not alone for their sakes, but to relieve the normal classes which their presence retarded.”  (page 117)

“The time comes when the child's own interests and those of the community demand the wisest, least selfish, and most statesman like action. Society must state in definite terms its right to be protected from the hopelessly defective and the moral pervert, wherever found. This constitutes the real problem of the abnormal.  At the adolescent period those unfit for parenthood should be guarded—girls and boys—and society should be vested with authority and power to accomplish segregation, the conditions of which should attract and not repel.” (page 123)

Sixty five years later the term Handicapped was used in the precursor to the ADA, the Rehabilitation Act’s Section 504.  While still rooted in the medical and charitable conception of disability the term handicapped was anchored to a broader definition of disability “A physical or mental condition that substantially limits one or more major life activity” and the focus is now on preventing discrimination within federally funded programs, including state and local government, solely on the basis of handicap.  After a four year struggle to implement enforceable regulations the law would emphasize accommodations that would allow participation in the most integrated setting possible rather than segregation.

Thirteen years later in 1990 the American’s With Disabilities Act (ADA) was passed extending rights beyond federal fund recipients by including private employers and business in the same fashion as the Civil Rights Act.  The opening of the of the ADA summarizes the findings of Congressional hearings stating:

“individuals with disabilities are a discrete and insular minority who have been faced with restrictions and limitations, subjected to a history of purposeful unequal treatment, and relegated to a position of political powerlessness in our society, based on characteristics that are beyond the control of such individuals and resulting from stereotypic assumptions not truly indicative of the individual ability of such individuals to participate in, and contribute to, society”

In 2008 Congress passed the ADA Amendments Act providing feedback on the Courts’ interpretation of the ADA stating in part that:

“In enacting the Americans with Disabilities Act of 1990 (ADA), Congress intended that the Act “provide a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities” and provide broad coverage;”.

The bulk of the amendments clarified the broad coverage of the ADA; making the definition of disability more inclusive.  Congress also revised the prohibition on discrimination from against “otherwise qualified individuals with disabilities” to “on the basis of disability”.  This brought the ADA’s prohibition against discrimination in sync with the protections based on race, national origin, sex and veteran’s status. 

That brings us to this week’s 23^rd anniversary of the ADA.  The changes in public policy, attitudes and daily realities that are reflected in this small slice of civil rights’ history are remarkable. The ADA sets the stage for disability becoming an implicit part of efforts to support and value diversity alongside ethnicity, sexuality, national origin, religion and race becoming an implicit part of efforts to value diversity.  Whether you develop curriculum, policy, the built environment or the virtual tools the ADA encourages the integration of Universal Design principals by professionals rather than simple reliance of minimum compliance checklists.  What remains on the civil rights horizon?

The world is increasingly interdependent.  Business, education, communications and entertainment are increasingly global and disability policy must recognize this.  How access and civil rights for the disabled are defined around the word is uneven.  To ensure the rights of American’s working, studying, or traveling abroad the US and its role as a world leader the US needs to shape and support international treaties as it has done with the  World Intellectual Property Organization’s  Marrakesh Treaty To Facilitate Access to Published Works for Persons Who Are Blind, Visually Impaired, or Otherwise Print Disabled and the United Nations Convention On the Rights of People with Disabilities.  The next critical steps if, as Congress put it when they passed the ADA “The Nation’s proper goals regarding individuals with disabilities are to assure equality of opportunity, full participation, independent living, and economic self-sufficiency” is Senate ratification of these treaties. 

What changes can you imagine for the next 23 years?

L. Scott Lissner, Ohio State University ADA Coordinator, Office Of Diversity And Inclusion
Associate, John Glenn School of Public Affairs

Lecturer, Knowlton School of Architecture, Moritz College of Law & Disability Studies

President, Association on Higher Education And Disability

Chair, ADA-OHIO
Appointed,  Ohio Governor's Council For People With Disabilities, State HAVA Committee & Columbus Advisory Council on Disability Issues

Meet the National Council on Disability

NCD is an independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities. NCD is comprised of a team of fifteen Presidential appointees , an Executive Director appointed by the Chairman, and eleven, full-time professional staff. 

NCD's Mission

NCD's mission is to be a trusted advisor, in collaboration with people with disabilities to:

• The President
• The Congress
• Federal entities
• State, tribal communities, and local governments; and
• Other entities and organizations

NCD fulfills its advisory roles regarding disability policies, programs, procedures, and practices that enhance equal opportunity by:

• Convening stakeholders  to acquire timely and relevant input for recommendations and action steps
• Gathering and analyzing data and other information
• Engaging and influencing current debates and agendas
• Identifying and formulating solutions to emerging and long-standing challenges; and
• Providing tools to facilitate effective implementation

DAC's ADA Celebration! Join Us!

Join us on July 26th for Disability Action Center's 2013 Celebration of The American's with Disabilities Act! Enjoy FREE food and Entertainment! ‪#‎ADA‬ ‪#‎disabilityrights‬ ‪#‎advocacy‬‪#‎adacelebration‬ ‪#‎disabilityactioncenterNW‬

House probe cries foul on Social Security disability claims

Social Security is approving disability benefits at strikingly high rates for people whose claims were rejected by field offices or state agencies, according to House investigators. Compounding the situation, the agency often fails to do required follow-up reviews months or years later to make sure people are still disabled.

Claims for benefits have increased by 25 percent since 2007, pushing the fund that supports the disability program to the brink of insolvency, which could mean reduced benefits. Social Security officials say the primary driver of the increase is demographic, mainly a surge in baby boomers who are more prone to disability as they age but are not quite old enough to qualify for retirement benefits.

The disability program has been swamped by benefit claims since the recession hit a few years ago. Last year, 3.2 million people applied for Social Security Disability or Supplemental Security Income.

In addition, however, management problems "lead to misspending" and add to the financial ills of the program, investigators from the House Oversight and Government Reform Committee say.

"Federal disability claims are often paid to individuals who are not legally entitled to receive them," three senior Republicans on the House committee declared in a March 11 letter to the agency. Among the signers was the committee's chairman, Rep. Darrell Issa of California.

Social Security acknowledges a backlog of 1.3 million overdue follow-up reviews to make sure people still qualify for benefits. But agency officials blame budget cuts for the backlog, saying Congress has denied the funds needed to clear it.

Social Security spokesman Mark Hinkle said the agency follows the strict legal definition of disability when awarding benefits. In order to qualify, a person is supposed to have a disability that prevents him from working and is expected to last at least a year or result in death.

(read more here)

The Program for Disability Benefits for Those Federal Workers Reported as Waste

The program for the disability benefits for those federal workers is said to be wasteful and abused. This is because it was said that a lot of healthy federal workers are feeding off of the benefits when they have no need too. A lot of them are leading healthy, happy lives and doing things – such as running marathons that you wouldn’t do if you had an actual disability. They are traveling the world, scuba diving, skiing in the snow, and buying boats while collecting over $100,000 annually in disability payments. A lot of the workers make more on disability payments then if they were to actually work at their jobs. A lot of people are also using the disability payments as retirement payments instead. Most of the recipients are 66 or older,, six of them are over 100 years of age which is well past the age of retirement.

A lot of times states have stronger anti fraud protections, but the federal’s laws are just hoping that the employees are telling the truth when it comes down to collecting these payments. Workers comp seem to be just the thing to go on for retirement or if you’re laid off and no one seems to check anything out due to the fact that it is through the federal. A lot of people are saying the a reform is needed in order to crack down on what is being changed through the system.

(read more here)

Teen with Autism Changes Disability into Talent

Today’s youth has many different challenges that they are faced with everyday. They are all thinking about college and what to do when they grow up and how to pass classes, but some students find that other challenges might be harder to go through. One 17 year old boy, Grant Manier has autism, and this makes it difficult for him to communicate and socialize with his peers. He did however, find a way to overcome this obstacle by becoming an Eco-Impressionist.
(read more here)

VA Clearing All Old Disability Cases

The push that the department went through in order to eliminate the oldest of old cases from the backlog they have experienced has paid off finally. 97 percent of the backlogged cases have been processed over the past two months. A lot of these cases have sat for two years. Around 65,000 cases were eliminated from the backlog which is rather impressive. They gave priority to some of the oldest claims that were sitting there in order to give these veterans a chance to start collecting on their disability funds if they are eligible. They told those that were new to submitting that due to the new push for the older claims, the average wait time was now close to 300 days.
(Read more here)

Deaf-blind Ottawa woman angry after ‘humiliating’ Air Canada flight | CTV News

Deaf-blind Ottawa woman angry after ‘humiliating’ Air Canada flight | CTV NewsAn Ottawa-area woman who is both blind and deaf has launched a formal complaint against Air Canada after a difficult trip to Alberta last week that she says left her frightened and humiliated.

Christine 'Coco' Roschaert is a 33-year-old motivational speaker who has travelled the world to advocate for the rights of the deaf-blind community. She was born deaf and lost most of her sight in her late teens through a condition called retinitis pigmentosa.

Roschaert has taken more than 1,000 flights to 50 countries around the world for her speaking engagements. Those trips have included dozens of solo flights aboard Air Canada, in which she brought along only her white cane to guide her.

But the Air Canada flight she took last Friday from Ottawa to Edmonton traumatized her, she says.

Roschaert says she got through security and boarded her flight without a problem. But before takeoff, a manager with Air Canada walked up to her and told her she had to get off the plane.

“I thought I was being arrested for something, or that I was in trouble,” Roschaert told CTV Ottawa, speaking through her sign-language interpreter. (click the link above for the full story)

Let the Camping Begin!

"For those of you who love to camp, are new to camping, or are dying to get out in the woods despite your disability. "

Check it out for Top Fives of Equipment, Campsites, Parks, and Trails... and plenty more! 

Accessible Camping Guide (click Here)

The Accessible Wilderness Society

Create, Develop and PromoteBarrier free Wilderness Opportunities for "Every Body"

Based on Vancouver Island in beautiful British Columbia Canada the Accessible Wilderness Society is working towards building Canada's first...

"Universally Designed" Resort and Campground Facility.
Please, explore the website to learn more about this Project and our travel Guide.

We are proud to be promoting barrier free wilderness opportunities for everyone.

Visit: http://www.awsociety.org/default.htm

Principles of Independent Living

• 
  Civil Rights – There must be no discrimination on the basis of disability.
• Consumerism - A consumer or customer is the best authority when purchasing a service or product and his or her wishes must be respected.
• Equal access – All community activities must be fully accessible to all people with disabilities.
• Community-based services – All programs and services that are community-based must be physically located in a non-institutional setting in their community and be responsive to the needs identified by people with disabilities in that community.
• De-medicalization - Individuals with disabilities are not always "sick" and may not require help from certified medical professionals for daily living.
• Self-help - People learn and grow from discussing their needs, concerns, and issues with people who have had similar experiences
• Advocacy - Systemic community-wide change activities are needed to ensure that people with disabilities benefit from all that society has to offer.
• Cross-disability – Programs and services must stress the full equality and participation of all persons with disabilities regardless of type or extent of disability.
• Barrier-removal - Architectural, communication and attitudinal barriers must be removed to ensure that people are able to fully participate in their communities. .
• Consumer control - The organizations best suited to support and assist individuals with disabilities are governed, managed, staffed and operated by individuals with disabilities.
• Community-based living - No person should be institutionalized on the basis of a disability.
• Peer support - The individuals best suited to support, assist, and guide people with disabilities are other people with disabilities.
• Confidentiality – All people have a right to receive assistance without sacrificing their privacy.

Developed by Bob Michaels with the assistance of the Illinois SILC and the European Network on Independent Living (2013)

Job Interviews

About a year ago, I was asked by our Vocational Rehabilitation (VR) agency to participate in interviews for a job opening they were trying to fill.  I imagine I was asked because I am chair of the SILC.

On the day of the interviews, each of the three interviewers was given a set of pre-approved questions with strict instructions not to deviate from them.  We were asked to score each response and total them to determine who the best interviewees were.

Now, I understand why this method was used.  It reduces opportunities for favoritism, nepotism, etc. and keeps the process above reproach.  It also, however, prevents intuitively selecting candidates based upon potential rather than experience.

Of the seven or eight applicants for the job, two rose to the top.  One had much more experience working in the disability community, so he was chosen.

There was, however, a third interviewee who all of us felt should have been in the final three, if not at the top. This man, who was probably in his late fifties, was incredibly nervous.  He had been laid off during the recession and been unemployed for several years.  Here was another guy who had submitted hundreds of applications, but only got one or two interviews. And he was blowing it.

If this was any other situation, I would have looked more closely at this man, taking time to establish rapport with him and making him more comfortable.  I would have asked more questions, giving him an opportunity to expand his responses.  I would have given him opportunities to creatively build upon his ideas.

Think of the implications for people with disabilities.   What is the likelihood that our consumers will even get an interview?  What are the chances that they will be nervous if they do get one?  We need a system where we can by-pass these rigid hiring systems. We could call it “affirmative action.”

(click HERE for more info on Independent Living articles)

What's at stake - Learn about this issue!

The Department of Labor (DOL) has proposed changes in federal labor rules that will have a significant negative impact on people with disabilities. These changes will most seriously impact people who have the most significant disabilities and rely on Medicaid services to live in the community. 

Labor advocates have urged people to support these rules to assure that attendants get paid minimum wage and are paid time-and-a-half for overtime work. The disability community recognizes the invaluable role that attendants play. We don’t oppose the requirement that attendants be paid minimum wage, but the overtime requirement will have a serious negative impact on people with disabilities.  In short, the proposed changes will: 

Force seniors and people with disabilities into institutions!

Increasing the cost of home and community based services by requiring overtime pay, without increasing the Medicaid rates or raising the Medicaid caps for available funding, will result in a reduction in hours of personal assistance, forcing some people with disabilities into unwanted institutionalization. The Department of Labor, itself, identified that some people would be forced into institutions because of these rules.

Cut the take-home pay of attendants!

Because Medicaid and Medicare rates are not being increased to cover the additional cost associated with these changes, states and home care agencies will simply limit the hours attendants can work, forcing attendants who currently work more than 40 hours a week to work for multiple agencies in order to match their current standard of living.

Reduce the attendant workforce!

Family and friends frequently work as attendants in consumer directed programs. These attendants won’t do attendant services for someone else. Consequently, we will lose those hours. By limiting the availability of family and friends as paid attendants in consumer directed personal assistance programs, the Obama administration will reduce this vital component of the attendant workforce and that will further threaten the independence of Americans with disabilities.

Force people with disabilities to hire strangers as attendants!

The Department of Labor dismissed concerns that their proposed rules would require people with disabilities to hire additional attendants. They noted that in traditional programs, turnover is high. However, they never considered that consumer directed programs are different. Attendants in those programs – some of whom are friends and family – may work for an individual for many years. With the hours attendants may work capped, people with disabilities will have to cut the hours of these trusted workers and bring strangers into their homes who will assist them with their most personal care.

Devastate consumer directed programs!

The Department of Labor did not adequately assess the impact of their proposed rules on consumer directed programs. In their analysis, the Department of Labor stated that "There is no consolidated source of data on state consumer-directed programs" even though there are several national resources devoted to the services within the disability community. It is our understanding that the Department of Labor has decided to determine who is the "employer" using an economic determination, which would determine that the agency is the employer in the vast majority of consumer directed programs. Even though the individual hires, trains, supervises, and dismisses their attendants. This approach disenfranchises the vast majority of people with disabilities who receive Medicaid services.

DOL Off My Body!

It's my body! The Obama administration and its Department of Labor have no business regulating me as if I were an assembly line! I want control of MY body – and who comes into my home, sees me naked, and touches me!

I should decide who touches me in bed...

but the Obama Department of Labor says it's their decision!

TAKE ACTION NOW!

As a law student I have learned that while our U.S. Constitution does not contain an express right to privacy, our nation and the Supreme Court of the United States have found that Americans do have a right to privacy. In fact, in 1992 the Supreme Court stated that "It is a promise of the Constitution that there is a realm of personal liberty which the government may not enter."

But now the Department of Labor is breaking that promise and entering a realm of personal liberty which the government may not enter - our bedrooms! The Department of Labor - under President Obama - has decided that it should regulate who touches people with disabilities in bed instead of allowing people with disabilities to make that decision for themselves by proposing rules that would require us to bring strangers in our homes and our bedrooms. 

The Supreme Court has consistently found that Americans have right to privacy in the bedroom. In Planned Parenthood of Southeastern PA v. Casey and in Lawrence v. Texas, both cases involving personal decisions made in the bedroom, our Supreme Court stated:

"These matters, involving the most intimate and personal choices a person may make in a lifetime, choices central to personal dignity and autonomy, are central to the liberty protected by the Fourteenth Amendment. At the heart of liberty is the right to define one's own concept of existence, of meaning, of the universe, and of the mystery of human life. Beliefs about these matters could not define the attributes of personhood were they formed under compulsion of the State."

For people with disabilities, deciding who your attendants are, how many attendants you have, who sees you naked, who helps you shower, who cleans you up when you use the toilet, and whoprepares you for sexual activity are all very personal choices that are central to our personal dignity and autonomy. The Fourteenth Amendment should protect the liberty of people with disabilities, just as it protects people without disabilities. At the heart of our liberty is the right to define our own concept of existence, including who assists us in our most personal matters. Our personhoods are stolen from us when choices about who assists us are made under the compulsion of the Department of Labor. 

Not only is the Department of Labor violating my right to privacy, it is also violating theExecutive Order that President Obama signed in January 2011 that sets the expectation that government agencies will "seek the views of those who are likely to be affected" by new rulemaking. Despite this explicit requirement in the Executive Order, the Department of Labor never worked with the Disability Community, including people with disabilities who use consumer directed personal assistant services. 

TAKE ACTION NOW!

Even though the Department of Labor didn’t work with the Disability Community, they did work closely with other groups - like PHI and the National Employment Law Project which are strong supporters of the rules. PHI is mentioned about 30 times in the proposed rules and NELP is mentioned seven, either in the text of the rules or in the footnotes. Conversely, the Department of Labor did not reference ANY of the major national disability organizations. As you read this, you might think that the Department of Labor simply forgot to mention the disability groups they worked with, but when you analyze the proposed rules, it’s clear that wasn’t the case.

The fact that the Department of Labor didn’t engage the Disability Community is obvious when it describes consumer directed services in the proposed rules. They note that "There is no consolidated source of data on state consumer-directed programs." Really! Apparently, staff at the Department of Labor are unfamiliar with this amazing resource called "Google".

Of course, they could have also called a Center for Independent Living and gotten the information the needed. Center staff are very familiar with any number of disability organizations around the country, which would be excellent sources of information on consumer directed services, including theNational Council on Independent Living and ADAPT. 

The only explanation for the omission is that the Department of Labor deliberately excluded the Disability Community from the process!

Advocates for this rule were well aware that the Disability Community had concerns about this policy direction. Disability groups in New York have expressed concerns about implementation of the Coke decision. Other national disability organizations had raised concerns about federal legislation which would require overtime pay. So, instead of seeking information from these organizations and the Disability Community which has a wealth of information about these programs but would also raise legitimate concerns, the Department of Labor relied on PHI to provide its analysis of the program. That way they could avoid needing to deal with the concerns the Disability Community had.

By not engaging the Disability Community in a dialogue about this important issue that will affect the lives of many people with disabilities in the most personal ways, the Department of Labor has not only violated the Executive Order, but also made a huge mistake. They ignored a long history that has clearly illustrated that people with disabilities are the best experts on how to assist people with disabilities. 

While earning my master’s in Disability Studies, I have read over and over again about how people with disabilities are in the best position to direct the assistance that we receive. The first Independent Living Center in the nation was created and directed by people with disabilities. The Americans with Disabilities Act was written based on the personal stories of injustice and discrimination that people with disabilities faced. The model of consumer directed services was developed by the Disability Community. It is a proven fact that the best outcomes are achieved when people with disabilities are involved in the process. Beyond proven fact, it is also just common sense – our input is vital because the rules will crucially affect us. 

I feel that the Obama administration is treating people with disabilities differently than it would treat any other group. Would the administration have developed rulemaking directly affecting African-Americans without engaging them? Can you imagine the administration pursuing rules that would affect the right of women to make decisions about their bodies without engaging ANY of the women’s organizations? Of course not! That’s why this is not only wrong – it’s utterly offensive! 

Now, to be clear, I don’t use attendant services. Not yet. However, I am realistic about what the future will hold and understand that it is very likely I will need attendant services. Right now, without attendant services, I decide who can come into my bedroom. I decide who touches me in bed. In the future, when I need attendant services, I should be able to still make those decisions. For the Department of Labor to make those decisions for me without my consent is criminal.

Luggage Tips for Wheelchair Travel – Packing to Carrying

The modern wheelchair provides the wheelchair user tremendous mobility and independence.  This ability transfers into more opportunities for solo business and pleasure travel.  Sometimes these trips require carrying a fair amount of luggage and gear.

The problem arises when wheelchair users attempt to apply able-bodied luggage systems such as rolling suitcases to wheelchair travel, or alternatively carry a large backpack on their back.  Only small suitcases are able to balance on the wheelchair user’s lap, and towing a large rolling suitcase risks a backward fall. A wheelchair user needs significant trunk control to handle the weight of a heavily loaded backpack. So what do you do when you have a lot of stuff to carry combined with a maneuverable but “tippy” wheelchair?

I am a T5 paraplegic.  When I travel and need to bring a “lot of stuff”, I use a six bag system. Six bags may sound like too many, but there is a method to the madness.

1. One small pouch contains all wheelchair related tools and supplies such as a spare inner tube, tire irons, Allen wrenches, lights, etc.
2. I use my everyday knapsack for carrying keys, glasses, and other personal items.
3. I use a medium sized cylindrical duffel bag for clothes and/or gear.
4. I use a rectangular bag with compartments for clothes and/or gear.
5. I use a medium sized backpack for more clothes and/or gear.
6. I use a large hockey duffle bag for consolidation for airline baggage.

For airline travel, in order not to exceed the fifty pound weight limit for a checked bag, I would put 25lbs in the Cylindrical Bag, 25 lbs in Rectangular Bag , and the remainder in the Backpack as a Carry-On as necessary. The Knapsack becomes the Personal-Item.

When I am on the move, I use the following setup:

1. The Pouch hangs under my seat.
2. The Everyday Knapsack goes on the back of my wheelchair.
3. The Cylindrical Duffel bag is place on my feet and bungeed securely to the front of my wheelchair.
4. The Rectangular Bag goes on the Cylindrical Duffel and my knees.
5. The Backpack goes on the back of my wheelchair over the Knapsack.
6. The Large Duffel bag is stored in any one of the other bags as most convenient.

The benefit of this multi-bag carrying method is that the Center of Gravity of the wheelchair is not dramatically changed.  This means that I am still able to pop and maintain wheelies for rough terrain and jump down curbs as needed.  Since the Rectangular Bag is not pressed up against my chest, I am able to lean forward for going up ramps and other inclines. On a side note, if a bag that I am carrying on my lap restricts my forward lean, I have found that going up backwards works very well.

In the event I was traveling from place to place with all my luggage and gear (i.e. backpacking through Europe) I would consolidate to a front Cylindrical Duffel, a rear Backpack, the under seat Pouch, and use a front Fanny Pack for items that need to be readily available such as money, phone, and camera. Valuables such as Passport and Cash go in an Hanging Pouch under my shirt for added security.

As long as the front Cylindrical Bag is tightly fastened this system is very stable and mobile. I have used this system in Europe, Korea, and Venezuela all while traveling solo.

For those that don’t feel that their feet make a stable enough platform to support the Cylindrical Bag, there are commercially available Folding Forks designed for that specific purpose.

In summary, bungee cords and duffel bags beat hard suitcases for wheelchair traveling almost every time.