Category Archives: Healthcare

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.