Make this Election Count With Emily Ladau

emilyladau_headshot2016-002This guest post is a link to a video created by Emily Ladau, on the importance of candidates discussing disability in a meaningful, substantive way. Emily is a recipient of the New York State Independent Living Council’s Patricio “Pat” Figueroa, Jr. sponsorship. The sponsorship was created to help dedicated young adults with disabilities who have demonstrated leadership skills. Ms. Ladau was recently elected the first ever youth member-at-large to the National Council on Independent Living in Washington, D.C., and the sponsorship will help make her participation possible.

Emily Ladau is a passionate disability rights activist and digital communications consultant whose career began at the age of 10, when she appeared on several episodes of Sesame Street to educate children about her life with a physical disability. A native of Long Island, New York, Emily graduated with a B.A. in English from Adelphi University in 2013. She is dedicated to harnessing the powers of communication and social media as tools for people of all abilities to become informed and engaged about disability and social justice issues.

All of Emily’s activism is driven by her firm belief that if we want the world to be accessible to people with all types of disabilities, we must make ideas and concepts surrounding disability accessible to the world.

On Recent Events… By Brad Williams December 2014/January 2015

Williams The African American community has been joined by many citizens in expressing concern at two unrelated, but similar instances resulting in the deaths of unarmed citizens, Michael Brown and Eric Garner, at the hands of police. The outpouring of concern was followed by prayer at churches across the country. Broad support is turning out to draw attention to this issue. The effort exposes the seemingly near impossibility of indicting a member of law enforcement for their actions. In the calls for justice, there has been recognition for mandatory training and increased diversity on police forces.

Recently, New York State Attorney General Eric Schneiderman outlined steps to restore public confidence in the criminal justice system. He sent a letter to Governor Cuomo requesting an interim executive order to direct the Office of the Attorney General to investigate and, if necessary, prosecute cases involving unarmed civilians killed by police officers.

As this issue gets addressed, it will be important for the Attorney General to consider other protected classes in these matters, such as people with disabilities. In Maryland, a recent headline ended in a death by law enforcement of an unarmed man, Ethan Saylor, a young man with Down syndrome. He wanted to see a movie for a second time when police were called to remove him. Because of his size, three handcuffs were used and he was subdued face down on the ground and left unattended. He was not able to breathe and died of asphyxia. A Grand Jury did not indict the officers. Link to article:

In California, Jonathan Meister stopped by a friend’s house to pick up snowboarding equipment. He waited outside. A neighbor called 911 believing it to be suspicious. The police approached Jonathan but he couldn’t hear or respond because he was deaf. He dropped boxes to use his hands to sign. They restrained him, but he broke free, jumped a nearby fence to use it as a barrier, so he could use his hands to signal that he was deaf. The officers promptly pummeled and tased Mr. Meister unconscious. Link to article:http: //

In both instances, knowledge about their particular disabilities could have helped to avert the situations. As mentioned earlier, part of the answer is to increase diversity on police forces. Even as this continues to be improved, training efforts will have to be increased and prioritized. In our state, the First Responders Training Program based at Niagara University is making progress to help promote disability awareness on this subject. Link to website: Dave Whalen is a council member and has been busy training a wide variety of police and fire departments, counties, and other stakeholders. In 2014, Dave facilitated four train-the-trainer sessions with law enforcement in Erie, Essex, and Monroe Counties as well as a state conference. Seventy trainers from thirty-seven departments participated. Below is a recent testimonial related to his trainings:

“I just wanted to take the time to thank you for the training over the past couple
of days. Dave clearly has a passion for the work that he is doing and it is evident
in the way he presented the material. I have attended quite a few trainings in the
11 years I have been doing this job and this one ranks right at the top. This is a
topic that I didn’t realize covered so much and is so important to our jobs every
day. So on behalf of the Geneva Police Department I would like to thank you for the
opportunity to pass along this important training to the officers of the Geneva
Police Department.” – Sgt. Michael Passalacqua, Geneva (NY) PD

In early August of this year, I met my civic obligation and served on a jury for a week-long trial in county court. The jury selection process was like organized chaos. When we were seated as a jury, the judge was very clear in his directions about the case and the limitations that shaped the parameters related to the charges. As we listened to witnesses and were presented with evidence, it raised several questions. Such as, “Why was the inmate going through detoxification in a cell? Shouldn’t he have been under medical care first, then returned to a cell once stabilized? Was his “behavior” really in reaction to their “authority,” or was it more the “side effects of his withdrawal?” Apparently, this thought process was off track and not within the scope of our specific instructions. In the end, given the instructions we were given, our jury found the inmate guilty of the charges.

I met my civic obligation, but my service on the jury gave me a glimpse of how exact, restricted, and narrow our court system is structured. Does it provide justice? Perhaps more so than other countries; but how do we address injustices and recognized trends or issues such as the one before us? Here are some truths:

• The demographics in our country are changing. Non-whites will become the majority by 2043. We need to embrace this change and understand that there is strength in diversity. I hope I live long enough to witness this transformation.

• Despite recent events, people should not look negatively at police officers. They provide a vital service for our communities. There are many positive, dedicated people in law enforcement. I personally know and am friends with several. Some have been my friends since junior high; others live in my neighborhood. Their effort will be needed to help make this change.

• This issue is not new. Recent events are raising it to a level where something needs to be done to make it a priority! Activists, members of all communities, and the media need to continue to increase awareness so that political leaders work with law enforcement and the criminal justice system to identify and make change occur to have a lasting impact on this issue for the African American and other communities.

It is All About the Profits! By Brad Williams

WilliamsI can remember the commercial for Mattel’s “See and Say.” The ad ran in 1973 for “The Farmer Says” version. The young boy sat on the steps to a brownstone, pointed the arrow to the picture of an animal, and pulled the string as it twirled around and voiced back, “The cow says moo.” Of course, the kid was just as interested with the duck quaking sound and the pig going…oink, oink, oink.

            Let’s travel forward and imagine this young boy, preoccupied with the pig’s noise back in the early 1970’s. In the time since, he has lived the American Dream, went to college, climbed the corporate ladder, married with a family, pets, luxury sedan and an SUV, vacations, investments, etc. He could be the head of a health insurance association, a lobbyist for their industry, or a CEO for a health insurance company. Within decade or so, this respected man will have his retirement horizon line in place and his golden parachute deployed.

            The other day, I sat down with our insurance agent. This person covers the health and dental policies. She presented the “options” available to us now that the Affordable Care Act (ACA) is in effect (i.e., “Obamacare”). I need to point out that I support the ACA because of the work we do and how there are peers who are uninsured and how many people with disabilities will benefit from the provisions related to no preexisting conditions along with mandating mental health coverage – among several other improvements.

I really admired this agent for what she was about to do because she certainly has a very difficult job and EVERYBODY must be venting their anger directly at her, which is very misplaced. She proceeded to tell me how our current high deductible plan would increase by 70% for an individual and 81% for a family. I laughed. How ridiculous and impossible! We could not “afford” the cost of the plan we currently held. The only way that we could do this type of policy would be to go down in coverage (meaning an extremely high deductible). Bottom line, if anyone became seriously ill or needed an operation, they would be in a very vulnerable position in terms of their health and finances. They are putting people at risk of being destitute due to their health care costs. I thought this was something the Affordable Care Act was trying to solve. So we went to a different type of policy, an EPO, and found that this might be a better option. I will know more in a couple of weeks. However, the brutal reality is we will have less coverage for our dollar and better remain somewhat healthy or else we will incur significant deductible and out of pocket expenses.

            Okay. So as our country moved to address some long-standing health care concerns and gaps, the health insurance companies and their infrastructure (let’s call them “the industry”) was given the task to comply and cost-justify the new plans and rate structures. Who allowed them to raise the rates to unprecedented “pig-knuckled” levels? The industry can say it is because of the expanded coverage they now have to provide and the greater number they now have to insure. There is no rational explanation for an increase of this magnitude for currently insured Americans.

An American Reality blog (posted on CNN back at the time the ACA was being formulated) sheds some light on the subject. The industry had direct input on the House bill, the President and Democrats backed off the idea of the public insurance option (competition) because the industry convinced enough people that it was a bad idea, and the Democrats included a bill requiring all Americans to purchase their insurance from the health insurance industry (to make sure that they supported the bill). And…a report released by the industry one day before the Senate Finance Committee was scheduled to vote on the bill claimed that if the bill they helped to write (the industry) became law, Americans should expect their premiums to jump to 111% over the next ten years! So the industry and politicians were all in on it and knew this day of reckoning would come.

The industry bluntly squeeze out the competition, played hard ball, and announced it all up front to cover the crassness of the political trade-off. Nobody wants the industry to fail, but what happens when health insurance companies become cash cows because of the new rate structures? They will be doing so on the backs of businesses and citizens. Will they adjust their rates down if these unprecedented increases prove to be too steep? Don’t hold your breath. It is all about protecting their solvency and profits.

In hindsight, the ACA should have included two additional provisions to help avert the shameful activity that is taking place. Health insurance companies should not have been allowed to raise existing health insurance rates more than 25% for the population of currently insured Americans. In addition, was anything set up to monitor the bottom lines of these companies, especially if large profits start coming in, and the industry ends up benefitting at record levels, doling out excessive campaign contributions through PACs to politicians? A FOX News report critical of health insurance companies identified that the CEO of AETNA insurance made $36 million last year plus several million in stock options and the CEO of Cigna made $12.5 million plus stock options.

I think Mattel should come up with an updated version of its classic toy called “The Citizen Says See and Say.” I would point the arrow to the taxpayer (who right now has empty pockets), pull the string, and listen to the toy say, “Any politician that accepts a campaign contribution from the health insurance industry is a pig in this environment.”

The Cost of Exclusion

WilliamsBy Brad Williams
NYSILC Executive Director

June 14, 2011 (Updated February 7, 2013)

In July of 2010 Governor Paterson signed a series of bills into law to amend Article 15-A of the Executive Law which related to minority and women-owned business enterprise development and procurement. These new laws took effect in October of 2010 and were designed to increase opportunities for Minority and Women-owned Business Enterprises (MWBEs) in New York State to impact their ability to conduct business with State agencies in various aspects of their contracting. The rationale for the measure was based on a disparity study conducted in 2010 that found “statistical and anecdotal evidence” of significant racial and gender discrimination. The study was required based on amendments made to Article 15-A during the Pataki Administration. It was recommended that the State take “constitutionally compliant” action.

I am not aware of the progress of these new laws. I certainly hope that they end up having the desired impact. I am writing this opinion piece today to point out some of the law’s unintended consequences.

First some background. I am a person with a disability who in my work with the Independent Living network looks to address the significant and wide-ranging needs of people with disabilities. We are a significant minority, representing approximately 20% of the total population. Based on U.S. Census Bureau 2009 estimates, this would translate into 61.4 million Americans or 3.9 million New Yorkers. Why is it, then, are we constantly excluded from the table and often an afterthought? People with disabilities are all ages, races, cultures, and genders – can be on fixed incomes or wealthy, and are tax-paying citizens. As a group, we also experience one of the highest levels of unemployment in the country. For example, people with disabilities constitute 20.6% of the State’s population with national unemployment rate of 15.6% versus 8.9% for persons without a disability (March 2011). The situation is magnified when you consider that the percentage of people with disabilities in the labor force was only 21% versus 69.7% for persons without a disability (March 2011). NYSILC conducted a statewide needs assessment in 2012. Based on U.S. Census data, the employment rate of all New Yorkers with disabilities (ages 18-64) was 31.3%, compared to 72% for New Yorkers without a disability, creating a gap of 40.7%! In addition, the poverty rate of New Yorkers with disabilities in the same age group was 30.2% – about two and a half times higher than the poverty rate of New Yorkers without a disability (ages 18-64). If New Yorkers with a disability were a country, their rate would rank them 58th in the list of impovershed countires right behind Botswana! Given these facts, it is obvious that people with disabilities need employment opportunities too. Since some people with disabilities have to address access issues, they might pursue self-employment as an option, which provides more flexibility over work scheduling and promotes the use of technology and telecommuting. However, this would not exclude individuals from seeking inclusive employment in a more traditional and accessible work environment.

Second, our network is funded through the NYS Education Department. The SED commitment calls for 12% to be provided to minority-owned businesses and 8% of contracted services to be provided to women-owned businesses. What are the unintended consequences? Some newly issued RFPs that have the combined 20% MWBE requirement are getting no response. The RFP is seen as being too difficult to manage, especially those with limited funds. Was this really the intent of the legislation – to take 20% of small State contracts to the point of rendering them ineffective? Net effect – nobody wins. When the 20% combined requirement gets implemented in the next Statewide Plan for Independent Living (SPIL) cycle of RFPs, it will result in people with disabilities losing their jobs in order to provide business for certified MWBEs which may not even be conducive, consistent, or relevant to providing services to the target population. It will end up adding to the already high unemployment rate for people with disabilities. Since disability can impact anyone, and we are mandated to be peer driven and consumer-directed, we hire qualified individuals with disabilities. This includes qualified minorities and women with disabilities who could potential lose their job in the process. Can somebody please tell how any of this makes sense? Think this is just hypothetical? Since I have a contract, in preparation of the next cycle, one person with a disability has already lost their job due to a restructuring and a few of our consultants, some having disabilities, stand to lose our business.

Third, how were individuals with disabilities excluded from the MWBE opportunity? It is hard to say. I suppose the people involved in the process were just representing their primary interests. This includes the Governor at the time, David Paterson, who probably identified more as a person of color than as a person with a disability. He knew the value of the legislation, but like many…oops…just forgot about those disabled people. Here’s my solution, the afterthought that we often have to deal with. Amend Article 15-A to expand the definition of “minority” to include a new section 8 (e) for businesses run by “people with disabilities” consistent with the definition in Human Rights Law Article 15, Section 292 (21). This is at least a proactive response to rectify a contractual situation that while it is assisting some groups, has excluded a rather large minority group that is struggling with “mind-bending” statistics and realities that government just doesn’t seem too motivated to do something about.

The Middle Ages

By Brad Williams
Executive Director
           After numerous requests, I finally relented and joined the ranks as a card-carrying AARP member. As I begin to learn what special privileges this membership affords me, including all the perplexities awaiting me on the verge of being a decade or so away from retirement (hey…I already get the senior citizen discount at Dunkin’ Donuts by virtue of my graying hair), I was reminded of the importance of taking some time to discuss issues with specific groups, like young adults with disabilities.
            Seriously, it has been a very long time since I was a young adult. It seems almost a lifetime ago. However, I can remember myself struggling with career choices and the onset of a disability…pre-ADA and the existence of the Center for Independent Living (CIL) network. I recalled these thoughts while attending the Youth Power Annual Leaders Dinner in Albany. This event was part of their statewide conference. I was greeted at the door of the hotel and escorted to the elevator.  Then I was introduced to several young adult advocates and led to the specific table in the conference room that they had selected for me. A group of six young adult advocates from across the state eventually joined me for dinner. I was impressed by the way they introduced themselves and shared background information. Soon they allowed me to do the same and more; I was encouraged to expand the discussion when necessary (taking a break for appetizers) until we were set up for the main course.
            Even then, dinner would wait. I was their captive audience. They had me sufficiently engaged and it was now time to get down to the “meatier” issues. With the exception of one person at the table, employment was a real problem. I certainly had been aware of the lack of career opportunities and knew it was not easy for college graduates to obtain employment in their field. By relating their own experiences, they made me appreciate just how difficult the situation is for young adults with disabilities. This included a less than positive experience by one individual at his local Labor Department which lasted a total of 15 minutes. Despite being connected to the Navigator program, he ended up without any tangible employment opportunities and was never assisted with resume preparation.   Our talk then shifted to something that several of them had experienced problems with – Disability Services Offices connected with colleges. One actually had a very positive experience. He was one year away from graduation and credited his success with the attitude of the people working in the office. A second person had an acceptable experience. The other individuals shared their stories of how these offices had basically let them down and not accommodated their needs. They explained that these colleges (all community colleges) seemed to have difficulty understanding how to accommodate students with cognitive or learning disabilities.  Without the proper supports in place, they dropped out.
            I was stunned.  I had a cognitive disability as a college student, and by good fortunate received the additional support I needed because of a professor who cared. Dinner was an afterthought. We got up and went through the buffet line, and finished our conversation at the table. I heard them loud and clear. It would be a matter of what could be or should be done about these issues.
            Unfortunately, I had to leave in order to commute home. I thanked the group for their time and feedback on the issues. As I made my way to the elevator, a person stopped me. He was sitting at the table next to us and had overheard some of our talk. This young man had a similar experience at his community college. He had requested a testing accommodation that college staff agreed to, but never put into place. Consequently, his grades had suffered and he was now on academic probation. I sat down and discussed the matter with him. At this point, he really needed third party intervention. I pulled out my business card and wrote down the name and number of the director of advocacy services for his local center.
            What a disturbing trend! Just how pervasive is this problem? Is it isolated to the community colleges? What makes the difference between colleges that provide quality support services to students with disabilities and ones the drop the ball? Someone had to have more information on this topic. Did certain programs need to learn from best practices? Was there a need for legislation to rectify the situation, or did these individuals need to become plaintiffs? I left with far too many questions and very few answers.
            I know the next forum that I should attend…something on aging. I better get up to speed on the various issues crucial to senior citizens! It’s really not that far away. I will probably be one of those pesky seniors with a walker that has a horn on the side (beep, beep). And I thought that I was going to be able to retire in the next decade? The battle over the protection of our rights, our services, our voice…and maybe even our existence…is perpetual and crosses generations.