Starting Over…

With the beginning of 2013, it seems like a good time to get back into blogging. While it is a somewhat artificial demarcation point, it always seems like with the passing of the calendar from December, back into January, it is a good place to be “starting over“. Naturally, this leads me to today’s earworm from John Lennon’s “Imagine”.

In thinking back on 2012, there were a number of very significant events which occurred for me. Most of my close friends know that my father passed away. But also, I finally got my health moving in the correct direction and I feel healthy and ready to be around for quite a few years. For a person with a significant disability, this is important!

Finally, in September, I was invited to a group on Facebook for people with neuromuscular conditions called “Living with M.D.” Being connected to such a group of people who have largely had similar experiences has been incredible. To be around smart, like-minded, successful and funny people is always good for one’s well-being. In looking ahead for 2013, I am excited to be tackling new projects, politically, legally and from a disability rights standpoint.

Stay tuned…

Kilroy/T.K. was here…

Once again, the Internets have come through big time! For some reason, recently I was thinking about how my father would scribble his version of the “Kilroy was here” image in various places, and his explanation for the drawing. This image and story has always struck me as funny and I had to confirm this information. As it turns out, there is a dedicated website for everything you could possibly want to know about “Kilroy was here“. Practically everyone associated with the World War II generation is familiar with this story, and it was definitely part of my father’s consciousness. He even had a cat named “Kilroy”.

Later that same afternoon, I was delivering some homemade kimchi to my friends Alejandra Ospina and Nick Dupree, who live in lower Manhattan. Alejandra and Nick are a more than interesting couple and both are very computer savvy! By way of explanation, Alejandra seems to be everywhere all over the Internet and is an administrator/liaison for an online community called GimpGirl; Nick is a cartoonist, writer and student, who creates his art using a trackball mouse and Photoshop software to publish his work online at superdude.org.

T.K. was here

This visit started me to think about how I used to draw quite often and it sparked a creative urge related to the aforementioned Kilroy. Apart from the artistic component, I am compulsive and I wanted to see whether I could dip my toe into visually creative waters once again. So as to not to bite off more than one can chew, all I wanted to produce with my first computer drawing effort was to change “Kilroy” to “T.K.”. In a way, I had a head start with this effort because I had already “borrowed” the “Kilroy was here” image and then converted the image to a bitmap file. From there, I inserted the graphics file into a Microsoft FrontPage document and inserted the “T.K.” by figuring out how to draw lines and move them around. Next, I took a screenshot of my progress and then opened it up in the primitive “Paint” program to save it in a JPEG format. Finally I went back to my photo editing software to crop the image. Talk about an absolutely crazy computer work around effort…!

In the end, this whimsical project was a lot of fun. If you are wondering, being self aggrandizing is far underrated and figuring out the different steps in this process was an interesting exercise. Everyone should do something creative every day creative…!

Recent hiatus

It’s hard to believe that it has been more than four months since my last posting. During that time there was the frenzy of the holiday season, but also, I had some nagging medical problems and I had to take care of the most difficult experience of my life when my father, Neal E. Small, passed away on January 7, 2012.

Neal E. Small was a proud and loving father to me and my sister Lucy and, in addition to (or despite) being an attorney, he had many interests beyond the law. Among his eclectic list of interests were: everything nautical, history, writing, politics, poetry photography, painting, tools and woodworking, science and engineering, inventions, etc.. In short, he was a Renaissance man.

As I have explained to people recently, my father was my biggest champion, supporter and best friend. Particularly for people with severe disabilities, the relationship between a parent and child is especially strong and it definitely was between my father and me. Hopefully in the near future I will have time to properly describe our bond.

In the meantime, I have been gradually getting back into work and have been participating in a national systemic advocacy issue by encouraging people to “Tell the US Department of Labor to work with the Disability Community!“. This effort is part of a national campaign to submit comments to the US Department of Labor in explanation of our opposition to these regulatory changes. For further information, take a look at the background information provided by the Center for Disability Rights.

Back in December, the Obama administration proposed amending the US Department of Labor regulations concerning home care workers. Under the current rules, home care workers are not subject to the ordinary overtime rules. This is called the “companionship exemption” to the Fair Standards Labor Act. The regulatory change that the US Department of Labor is considering is to eliminate the companionship exemption; workers would then theoretically be entitled to be paid overtime pay for everything over 40 hours per week.

However, basically every state and local government is on the verge of bankruptcy, so the prospect of home care workers actually getting paid overtime is a pipe dream at best. If these regulatory changes go through, what will probably result is an unofficial cap in the hours that a worker can put in per week. On a personal note, two of my personal care assistants will have their pay reduced. Thank you Pres. Obama!

The Importance of Community

This week I attended three separate events which caused me to slow down and acknowledge the importance of community. Throughout the week of October 16-22, I participated in the Occupy Wall Street demonstration, the Concepts of Independence Inc. Annual Gala and ending the week on Saturday, I went to a memorial service for a friend named Michael Imperiale, who recently passed away. One might think that there is not much connection between these events, but they would be mistaken. Within the disability community practically every event tends to illustrate our similar spirit and identity.

According to Miriam Webster, “community” is defined as:

1: a unified body of individuals: as a : state, commonwealth b : the people with common interests living in a particular area; broadly : the area itself <the problems of a large community> c : an interacting population of various kinds of individuals (as species) in a common location d : a group of people with a common characteristic or interest living together within a larger society <a community of retired persons> e : a group linked by a common policy f : a body of persons or nations having a common history or common social, economic, and political interests <the international community> g : a body of persons of common and especially professional interests scattered through a larger society <the academic community>
2: society at large
3: a joint ownership or participation <community of goods> b : common character : likeness <community of interests> c : social activity : fellowship d : a social state or condition.

Almost all aspects of the definition above were present in all of these events.

Like many people in America that are frustrated with the economy, government, and a whole host of corporate malfeasance, people with disabilities are no different. So, when the burgeoning Occupy Wall Street movement started to take hold, many were intrigued and wanted to get involved, myself included. Finally, people are coming together in opposition to the Tea Party/Ayn Rand activists. Naturally, I wanted to know more. Soon I discovered that other disabled people were interested too. In NYC, a group of activists with disabilities have given themselves on Facebook the name “Krips Occupy Wall Street” and have pledged to meet at Zuccotti Park every Sunday. While I probably won’t be able to go every weekend, I was there last week. People with disabilities have historically been discriminated against and marginalized in practically every aspect of society. Whether it is segregated education, a healthcare system that promotes nursing homes and the institutional bias, or the disproportionate rate of unemployment and poverty within our community, if there is one group that should be demanding our rights and accountability, it is the disability community. To be part of that effort was fantastic!

By way of background information for those that don’t know, Concepts of Independence Inc. is a not-for-profit organization that administers the Consumer Directed Personal Assistance Program here in NYC. Concepts was the first such organization of its kind in the country to allow people with disabilities to hire, train, manage and control the care that an individual receives in the home. After nearly 30 years, Concepts has become the model across the country. Under the Consumer Directed model, people with disabilities have the freedom to live independently and notably, in these tight budgetary times, this type of care is less expensive. Under this care delivery model, Personal Assistants are allowed to perform tasks which ordinarily must be completed by trained medical professionals, which is where the savings are generated. For most of the people that were in attendance at the Concepts Gala, we share a common experience of fighting for our independence and living independently successfully. While our disabilities are all very different, it is our desire to live freely that binds us together.

: Michael Imperiale in Washington Square Park

The memorial for Michael Imperiale was held in the community room where Disabled In Action meets, which is more than appropriate, given that Michael was a long-standing member. Disabled In Action (cofounded by Judy Heumann) was one of the earliest disability rights groups and Michael was involved from the beginning. Michael had a zest for life that few can match, but everyone should emulate. Michael had a definite connection in a large segment of the NYC disability community. Although Michael wasn’t a leader in the traditional sense, he was undeniably a strong disability rights activist. He attended practically every demonstration that I can remember over the past 20 years and at public meetings, Michael will be remembered for his unique ability to speak directly and get to the most important point. I will always remember his comment at a NYS Department of Health meeting, “Don’t you understand? This is about choice!”. Michael’s statement is exactly what people with disabilities are fighting for all across this country and it is part of our common consciousness.

The foregoing description of the disability community is something that should be celebrated and not viewed, as by some non-disabled people, that our lives are difficult and not worth much. I love the sense of commonality that I experience with other people with disabilities. For instance, rolling down a sidewalk and making eye contact with another chair user, there is usually a slight nod, or smile of acknowledgment and recognition. In a sense, we have all rolled in each other’s path. For me, being connected with my fellow disabled brothers and sisters is important. The disabled community has shaped the person I have become and I am lucky to be part of this vibrant community.

CLASS is Out

Recently I wrote a blog posting entitled “Thoughts on Occupy Wall Street” and, in rereading this piece, it struck me that the most important part of my earlier message was the part where I express my hope that the Occupy Wall Street movement ultimately results in a society that promotes “accountability of all those in power”. This week we saw another striking example of why this objective is so desperately important.

Specifically, I am talking about the Obama administration’s telling abandonment in implementing the Community Living Assistance Services and Supports (CLASS) Act, which was part of his overall healthcare reform package. By way of background, the CLASS Act was to be a voluntary, long-term care insurance program promoted by the late Sen. Ted Kennedy. Like other types of insurance, the CLASS Act was intended to create an insurance program for individuals to pay into a pool and at some point in the future participants could draw benefits to supplement long-term care, whether community-based or institutional. Obviously the CLASS Act would primarily assist working people. In complement of the CLASS Act was another piece of legislation called the Community Choice Act, which intends to eliminate the current institutional bias favoring nursing homes and institutions under Medicaid.

Clearly the CLASS Act and the Community Choice Act are related and should have been included in the omnibus health care reform legislation together. In fact, during the 2008 presidential campaign, the then Sen. Obama specifically mentioned the imperative of the Community Choice Act with a video message explaining his disability platform. On a personal note, it was this very commitment by Sen. Obama which made me support his candidacy. There were many people like myself who took this as a strong endorsement of the civil rights of Americans with disabilities; in essence, a promise to support our freedom. For the first time the disability community felt that there was someone on the way to Washington who would be working on our behalf.

In the now famous Martin Luther King, Jr. “I Have a Dream” speech, Dr. King speaks about the national obligation to fulfill a “promissory note” to the African American community. In a direct parallel, President Obama has given a “promissory note” to the disability community to advance our civil rights to live in the mainstream community and has so far defaulted. There were thousands of people that worked tirelessly to get Pres. Obama elected, largely as a result of his very public support for the Community Choice Act. Yet, with the sausage making/health care reform negotiations of 2009-10, the needs of our community were once again forgotten.

For me, it is not so much the abandonment of the CLASS Act that is indicative of the systemic betrayal to the disability community but rather, it was Pres. Obama’s failure to include and fight for the Community Choice Act that rubs me the wrong way. From the beginning, I thought that the CLASS Act was a distraction and not that great an idea. The CLASS Act was nothing more than tinkering around the edges. Real health care reform needs to include community-based, long-term care services as part of the social contract. Holding Pres. Obama and all other politicians accountable for this omission is one reason will will why I support the Occupy Wall Street movement.

Thoughts on Occupy Wall Street

My legal practice is in the area of promoting the civil rights of people with disabilities. As such, I pay very close attention to public policy and practically everything related to politics. Both personally and professionally, I am supportive of the Occupy Wall Street (OWS) movement. I support this burgeoning movement, not because I agree with them completely, but rather, because so far they have been the only opposing voice to entrenched power and the Tea Party. For many in the disability community, the Tea Party and Ayn Rand inspired activists are simply too scary.

As an example of my concerns, consider long-term care i.e., nursing homes. Medicaid usually pays the monthly bill for people in nursing homes, but on the other side, in many instances, these institutions are owned by publicly traded, for-profit companies. Consequently, there is a financial benefit to the owners of nursing homes to keep people warehoused, often against their will. Under federal Medicaid rules, states are required to pay for nursing home expenses, but they are not required to pay for services provided in the community. This results in many states simply deciding not to pay for and provide care in the community.

Another factor behind the institutional bias is the unions representing nursing home employees. Politicians are so desperate to curry favor with the healthcare unions that they will do anything to “protect jobs” and get reelected. We saw this most recently under Gov. Andrew Cuomo with his Medicaid Redesign efforts; New Yorkers with disabilities were largely shut out of the “Redesign” process and bracing for some awful policies headed our way.

In New York State alone, there are approximately 10,000 people in nursing homes, under the age of 65, that have expressed a desire to live in the community and, who by all objective medical standards, could live in the community safely and at a cheaper cost to taxpayers. In other states, the statistics are even more biased in favor of institutions and I have two friends that moved from Alabama to New York because they were looking at being forced into a nursing home.

Gradually more coherent objectives will get fleshed out and I do not expect perfection right out of the gate. Organizers on the right have been fine-tuning their arguments since the early 60s. If it takes the OWS a little longer than a few evening news cycles to express their message, it’s okay with me. What I hope ultimately results from the OWS movement is a series of principled policies that promote real accountability of all those in power, whether they are on Wall Street, politics/government, lobbyists or any organization which puts its self-interest above that of the individual.

For the time being, as the saying goes, “The enemy of my enemy is my friend” and that is enough for me.

Violent Public Comments

As I have tried to explain to people, my work is somewhat nebulous and follows how the media covers people with disabilities. Certainly, as an attorney I represent individuals and organizations, but of late I’ve been more interested in taking a more public role through my work as cohost of the Largest Minority Radio Show on WBAI .

In today’s New York daily news, there was a perfect example of something suggested by the title for this posting. In an article entitled “It’s no Garden of Eden! Residents say adult home is abusing them” the story of a horrible adult home was conveyed.

One might think that the average reader would be outraged and demand that more be done to help the residents. Not so! As is seen all too often, under the protection of anonymity, readers feel absolutely comfortable basically blaming the victims. Without going into a comprehensive data analysis, I have seen this phenomena in a broad spectrum of publications. Maybe this is simply part of the “human condition”. But, it is important to at least be aware that this occurs.

Introduction

I have been an Attorney since 1994, practicing primarily in the field of Disability Law and is a graduate of Long Island University and Brooklyn Law School. Additionally, I cohost a radio program called “The Largest Minority” on WBAI, New York, 99.5 FM in NYC.

Apart from my interest areas mentioned above, I also have my own blog. While my writing will probably be related to the topic areas suggested above, I wouldn’t rule anything out. Please check out my blog here.