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Monday, September 26, 2011

Postscript to Hurrcane Irene and Failure in Emergency Disability Planning

Hi Again:

In my last post, I described my individual experiences and the unmistakeable reality that while experiencing the devastating onslaught of Hurricane Irene at the end of August, there were literally no other viable option left but to remain in my apartment after being alerted to the fact that no accessible accommodations were available for people with disabilities under the auspices of the New York City's Office of Emergency Management within the Bloomberg administration.

According to the latest Facebook posting by Susan Dooha, Executive Director of CIDNY(Center for Independence of the Disabled in New York - an advocacy agency:

"Major disasters in New York City such as the September 11th terrorist attack and more recently Hurricane Irene, have shown that the city is not prepared to meet the needs of people with disabilities during disasters. A lawsuit filed today in Federal District Court alleges that the City of New York discriminates against men, women, and children with disabilities by failing to include their unique needs in emergency planning."

This means that by virtue of pure negligence, the federally-run agency within the city boundaries failed to include its citizens with disabilities in the planning and implementation process therefore violating the equal access provisions of the Americans with Disabilities Act. It also put that segment of the population at a greater than chance probability of health risks or injury that's disaster- related. Simply making it mandatory that a person with a disability be accompanied by a hired personal assistant as a precondition for acceptance into an emergency shelter is not sufficient to address the need for adequate temporary shelter. There are usually extenuating circumstances pertinent to each individual with a disability.

Unless these factors are taken into account and facilitated through honest and thorough communication between OEM and the disability community, such missteps are bound o occur. Let's hope and trust it does not happen again the next time a disaster strikes.

Friday, September 9, 2011

My Dalliance with Irene - a Failure in Emergency Disability Planning

Hi Again!

In this post, I relate my experiences as an individual with a disability who uses a wheelchair, manual or powered, when Hurricane Irene hit New York City with a ferocious vengeance. I reside in the Kips Bay/Murray Hill section section of the city,g roughly 3 blocks from the East River, near the vulnerable, low-lying areas classified as "Zone A" by NYC Office of Emergency Management (OEM) in an eighth floor apartment with an elevator. The issue was whether to remain in my apartment to ride out the storm or to seek local designated emergency shelter in this instance, Baruch College. On the morning of August 28th, Sunday, we were waiting for Mayor Michael Bloomberg to issue a mandatory evacuation order. At that point, I noted Facebook post by Susan Dooha, the executive director of the Center for Independence of the Disabled of New York, known by its acronym, CIDNY, a seasoned advocacy agency, stating that emergency shelters run by OEM were inaccessible for people with disabilities, particularly those using wheelchairs and/or were run by volunteers poorly trained to accommodate such need. Reading this item made me realize that it was best remain in the apartment and that was an attitude of benign neglect within the Bloomberg administration when it comes to emergency disability planning for such and other contingencies. Bloomberg himself compounded the situation with a major gaffe: he urged citizens to take taxis to nearest shelters without mentioning the needs of citizens with disabilities. If one needed further proof of the systemic devaluation of people with disabilities, this is it! If they were valued, emergent planning for his sector of the population would have been factored in from the beginning. There needs to be greater depth of communication between OEM and the disability community from here on so that this chaotic situation would not repeat itself.

Thursday, September 1, 2011

Evidence of Devaluation of Disability by Society

Hi there!

Increasingly, in light of increasing economic pressure to pass stricter austerity measures at every level of society from the national scene down to the community arena and even in interpersonal exchange, perceptions of people with disabilities are being altered - and not in a good way either. For example, in New York State where I reside, tin the effort to curb Medicaid expenditures Governor Andrew Cuomo empaneled a Reform Commission to find ways to realize huge savings. Among the recommendations that are presently being enacted is to shift control of home care from the traditional Human Resources Administration to a new bureaucratic entity called the Medicaid Managed Long Term Care Program which itself is grounded on the medical end business paradigm. This structure has the potential to negatively impact on the daily lives of people with disabilities like myself who use Consumer Directed Personal Assistant Program which enable us to live productive, independent lives by autonomous control over the duties and responsibilities of the personal assistant being utilized by the consumer with a disability. The real danger is that in the name of savings physician mandated hours of coverage will be cut severely to the point that the very quality of personal care will be compromised to the point that the consumer will have virtually no choice but to become institutionalized, an extremely expensive and will- sapping proposition. Those with severe disabilities will face a greater prospect of dying sooner than the average life expectancy simply because the quality of essential care is nonexistent. In addition, under the managed care framework, the autonomy of the consumer to hire and fire aides for good cause will be whittled away and replaced by bureaucrats who assume " custodial" care of us and have virtually no conception of the daily needs of the individual person with a disability. It is as if the presence f an impairment denotes incompetence in making daily decision even when evidence exist that there is a history of highly successful experiences. As a matter of fact Consumer Directed Personal Assistant Programs have been proven to cost at least a third of what is required to maintain the patient in a nursing facility precisely because it is situated in the home and therefore within the community. The accrued savings would add up to millions of dollars with the emphasis of community- based living with ancillary support systems in place. This is a classic instance in which stereotypic perception of people with disabilities informs the policy directives,usually controlled by the medical establishment. It harkens a return to the eugenic movements of the 19th century where the social Darwinist ethos of survival of the fittest predominated and those who either by birth or happenstance fell short of the ideal embodied norm faced moral and social opibrium.