Trump Shenanigans After Obamacare Repeal-and-Replace Senate Efforts Failed

 Recently, the entire nation was on tinderhooks as thee Republican-led US Senate controlled by a Majority Leader Mitch McConnell with the backing of Speaker of the House oF Representative, Paul Ryan, deliberated on whether or not to repeal and then replace Obamacare, the signature healthcare legislation oF Barack Obama’s presidency. Fortunately the effort fell looked  for the third and final time, to head towards an igmoninous defeat without coming to a vote when five key Republican Senators (John McCain, Claire McCaskill, Linda Murkowski, Patty MurrayTed Cruz and Rand Paul) all for various reasons, declined to suppprt the initiative and voted “No” accordingly!  Indeed this collective action was a strong acknowledgement that  repealing the Affordable Care Act and replace with the Graham-Cassidy-Heller-Johnson version of the American Health Care would, according to the projected estimates of the Congressional Budget Office and the nonpartisan Kaiser Family Foundation, cause millions of people, particularly those with pre-existing conditions, to not only potentially lose Medicare and Medicaid coverage at a loss of $119 billion but also force those who possess such insurance to pay higher premiums. It was a cost that was and is completely unsustainable and must be stopped at every turn. This led to Trump castigating every key player who had a role in the healthcare negotiations since he didn’t get the precise results he desired! The problem is that we have a President who belongs to an adult day care center, stated by Senator Bob Corker, the Chairman of the Senate Foreign Relations Committee, a key Congressional position, with his Napoleonic temper tantrum unleashed on Twitter!! The heated rhetoric between Trump and North Korea’s dictator, Kim Jong Un undoubtedly will raise the stakes, ratcheting up the military firepower in saber-rattling! We can’t afford such uncertainty international diplomacy not seen since the Cold War of the 1950s and 1960s!

In the Eye of the Whirlwind in Washington, DC

I haven't felt compelled to post for a while until now when  a  political storm created  by a President who, addicted  to  expresssinng his  basic unrestrained fury in public through his Twitter acccount(s) when things don't meet his real or imagined expectations, acts like a dictator of a banana republic, enriching further his global business empire to the detriment of others affected by his capricious and impulsive decisions that hew to a Republican big business and anti-climate change agenda championed by the secretive and influential Koch brothers. Such a mindset, clothed in the mantle of free enterprise and competitive bidding practices, ultimately presents a real threat to the well-being not just of the American citizenry, as the polarized debate over the poorly developed American Health Care Act  but also more crucially the fundamental infrastructure which enable a key segment of that population, persons with disabilities to  lead fully independent, productive lives as contributing members of their  communities. The imperiled support system is a mosaic  of interlocking elements such as securing qualified personal  assistants to aid in daily living activities as compensating for  one's limitations whose hourly rates are below parity  levels, lack of  access to securing customized wheelchairs to meet individualized mobility needs based on the specific type and degree  of impairment involved,  funded by  Medicare and Medicaid under aegis  of the Centers  for Medicare and Medicaid (CMS) within the Department of Health and Human Services (HHS) helmed by the agency Secretary Tom Price, a physician appointed by President Trump. Price pledged that he would dismantle the very same federal institution he was chosen to oversee. We're living in an Orwellian society full of doublespeak where nothing appears as they seem to appear, ruled by an entrenched plutocracy at the expense of a highly vulnerable populace who rightly feel exploited by the ever--widening income disparities. Resistance to Trump means leveling the playing field for all people!

Trumpcare: A Clear and Present Danger to the Disability Community

The Republican-dominated House of Representatives,  conisisting largely of Congressmen  committed to an antiquated free-enterprise and states-centric ideology reminiscent of the philosophical outlook of Ayn Rand: a government without any regulatory authority, unveiled their own "health care plan",  the American Health Care Act, an extremely short-sighted response to the Obama signature legislation and legacy, the Affordable Care Act. As a matter of fact, under leadership of Speaker of the House Paul Ryan and Senate Majority Leader Mitch McConnell Congress was able to repeal the Affordable Care Act which included expanded Medicaid coverage for the most vulnerable segments of American society, especially those living at or below the poverty line. The entire Medicaid program as it exists today is to be defunded  under this Republican proposed legislation. This includes persons with disabilities, African-Americans, Latinos and LGBTQ groups.  The Congressional Budget Office charged with providing nonpartisan cost estimates, just released a detailed budget report outlining the financial consequences of eliminating Medicaid and other entitlement programs, causing 21 million people to fall between the cracks jeopardizing their overall well-.being and "replacing" it with a bogus, state-run block grants program with virtually no no federal accountability at all, is courting apocalyptic disaster for the disability community both on an individual basis  and as a powerful political entity (approximately 40 million in US according to government census and CDCP figures). To put bluntly, members of of the disability community will left without any dependable insurance system that pays for the enable me  and others with physical disabilities to lead highly productive meaningful lives such as personal care assistants who daily tend to our overall well-being. The key in fighting this erosion of protective enabling legislation  is to mobilize ALL stakeholders(especially the Medicaid Long Term Care agencies such as ICS, Concepts, Partners Health Plan (for developmentally and intellectually disabled consumers), state/city agencies as well as disability rights advocates) to forcefully pressure key liberal Democratic lawmakers such as Senator Charles Schumer the Senate Minority Leader, Congressman Jerrold Nadler, Senator Kirsten Gillibrandt, Congressman Jim Langevin from Rhode Island and a paraplegic himself, Senator Elizabeth Warren from Massachusetts , former Vice President Joseph Biden and even former President  Barack Obama to push back hard and eliminate the proposed GOP agenda entirely! I’ll collaborate with leaders of the disability rights movements, some of whom are friends of mine to make it happen, but the pressure must be a sustained one!

American Health Care GOP Plan: A Recipe for Disaster

 The Republican-dominated House of Representatives,  conisisting largely of Congressmen  committed to an antiquated free-enterprise and states-centric ideology reminiscent of the philosophical outlook of Ayn Rand: a government without any regulatory authority, unveiled their own "health care plan",  the American Health Care Act, an extremely short-sighted response to the Obama signature legislation and legacy, the Affordable Care Act. As a matter of fact, under leadership of Speaker of the House Paul Ryan and Senate Majority Leader Mitch McConnell Congress was able to repeal the Affordable Care Act which included expanded Medicaid coverage for the most vulnerable segments of American society, especially those living at or below the poverty line. The entire Medicaid program as it exists today is to be defunded  under this Republican proposed legislation. This includes persons with disabilities, African-Americans, Latinos and LGBTQ groups.  The Congressional Budget Office charged with providing nonpartisan cost estimates, just released a detailed budget report outlining the financial consequences of eliminating Medicaid and other entitlement programs, causing 21 million people to fall between the cracks jeopardizing their overall well-.being and "replacing" it with a bogus, state-run block grants program with virtually no federal accountability at all, is courting apocalyptic disaster for the disability community both on an individual basis  and as a powerful political entity (approximately 40 million in US according to government census and CDCP figures). To put bluntly, members of of the disability community will left without any dependable insurance system that pays for the enable me  and others with physical disabilities to lead highly productive meaningful lives such as personal care assistants who daily tend to our overall well-being. The key in fighting this erosion of protective enabling legislation  is to mobilize ALL stakeholders(especially the Medicaid Long Term Care agencies such as ICS, Concepts, Partners Health Plan (for developmentally and intellectually disabled consumers), state/city agencies as well as disability rights advocates) to forcefully pressure key liberal Democratic lawmakers such as Senator Charles Schumer the Senate Minority Leade, Congressman Jerrold Nadler, Senator Kirsten Gillibrandt, Congressman Jim Langevin from Rhode Island and a paraplegic himself, Senator Elizabeth Warren from Massachusetts , former Vice President Joseph Biden and even former President  Barack Obama to push back hard and eliminate the proposed GOP agenda entirely! I’ll collaborate with leaders of the disability rights movements, some of whom are friends of mine to make it happen, but the pressure must be a sustained one!

Illogical Medical Terminology Used in Rehabilitation

Lately I've been reflecting on a few common descriptions of various medical contributions used by physicians to denote either the current status or future prognosis of a medical condition. The illogic of  stating that a degenerative condition such as Spinal Muscular Atrophy, Muscular Dystrophy or even Multiple Sclerosis is "progressive", indicating the degree of functional deterioration over time, sounds like medical doublespeak wherein the term "progressive" actually means loss of ability as the condition spreads. It is a clear instance wherein language is used as a process of distancing oneself from the felt experiences of the patient living with the condition in his/her daily life. Cerebral Palsy, which is what I was born with, is a neurological condition that is  considered relatively "stable" over time with an average life expectancy close to the norm, provided that a healthy lifestyle and flexible muscle tone is maintained. Physicians and others in the allied professions should only use such descriptors in the context of providing complete clinical summaries of the functional range required to carry out specific tasks. These additional details woul go a long way towards lessening the distancing effects of medical jargon and come closer to approximating the actual experiences of the consumer or patient with a disability, thereby facilitating constructive rapport between two participants in the dialogue.

Need For Fair and Protective Due Process Mechanisms for Clients of Consumer Directed Personal Assistance Programs

The Governor would allow the State to contract the fair hearing process to a private company. This amounts to the centralized privatization of our basic judicial process.

Medicaid consumers had the right to a fair hearing when their services were reduced or terminated. While waiting for the fair hearing, they could receive “aid continuing" or maintenance of current services. This allowed them to continue to receive services at previous levels until the fair hearing was decided by an administrative judge assigned to the case.

For many consumers in community-based long-term care, particularly those with complex needs, "aid continuing"is the only thing standing between the consumer and  becoming institutionalized in a a nursing home.

Now, when consumers are shifted  to managed long term care, their fair hearing rights, fundamental due process rights guaranteed under the Constitution, are being threatened as a consequence of privatization.

Consumers will have to go through the MLTC plan’s internal and external appeals process before they have the right to a fair hearing.

If the Governor gets his way, the fair hearing could be held by a private company.

The right to an impartial fair hearing without delay is critical to a consumer’s ability to live in his or her community. The internal and external appeals process adds unnecessary bureaucratic steps that
tend to delay much needed services.

Some consumers have completely lost their right to appeal because no education was done on the
change from the traditional administrative process to the MLTC model. People have filed a fair
hearing request, as they have done for the past 30 years only to have the Administrative Law Judge rule that they need to go through the managed long term care plan. Unfortunately, by the time they go to the plan, the appeals window has passed and they have lost their right to appeal.

MLTCs can change or end anyone’s services without  prior notice or fair hearing rights if the change is made at the end of an authorization period.

Reauthorizations are not based on the period of time people will need services, they are required by
law every six months to make sure enough services are being provided and maintained at prescribed
levels. Before, services could not be reduced without proving that the consumer’s situation had indeed improved.  Without aid continuing and with exhaustion of due process authorization will serve as a window to reduce services without protections.

In CDPA, consumers who face the loss of services due to the inability to receive aid continuing will have to dismiss their workers.  Even if they do restart services, they will face further service delays as they identify new workers, since theirs will have likely secured new employment.

At this time when the state is seeking to implement an Olmstead Plan as required by law, this policy poses the strong distinct possibility of  reversing that trend, moving people with disabilities from the community back  to  institutions a highly retrograde step.

Assembly Member Richard Gottfried has introduced A.4996, which extends fair hearing rights and
aid continuing rights to consumers in MLTCs. That bill needs to be passed in order to protect the most fundamental rights.

Fiscal Intermediary Entities and Licensure - Medicaid Funding of Consumer Directed Personal Assistance Programs

Fiscal Intermediaries, that receive Medicaid funds to pay personal care vendors, are  the only entities in the health care industry that are not regulated in any form.

Historically, the Local District Social Services (LDSS) of New York State, or in New York City, the Human Resources Administration (HRA), served as the “gatekeeper,” determining the criteria by which they would offer contracts to fiscal intermediaries.

The implementation of managed care and managed long term care has led to the gradual degradation of this process.  Licensed Home Care Service Agencies are entering into contracts to offer consumer directed services with no understanding of the Consumer Directed Personal Assistance Program model  or how it works.

CDPAANYS (Consumer Directed Personal Assistance Association of New York State) has the expertise to implement criteria and can work with the Department of Health to implement standards using a time tested paradigm.

Many licensed agencies that are purportedly offering the program do not even know the basics:
*Some are using the Personal Care Aides in the same manner they would in traditional personal care;
*Some are setting schedules FOR the workers, instead of allowing the consumer to establish the days               and hours that will be worked. It it a crucial distinction since it deprives the consumer of the autonomy of making his/her own decisions on a daily basis.

CDPAANYS (Consumer Directed Personal Assistance Accociation of New York State) has the expertise to implement criteria and can work with the Department of Health to implement standards.

Many licensed agencies that are purportedly offering the program do not even know the basics:
Some are using the Personal Care Aides in the same manner they would in traditional personal care;
Some are setting schedules for the workers, instead of allowing the consumer to establish the days and hours that will be worked.

This leads to a dangerous situation where home care agencies are able to circumvent the laws that are put in place to protect consumers when an agency is in charge of their care.  Consumer Direction only works because it is the consumers that recruit, hire, train, supervise and terminate their workers.

We know that some agencies have used Consumer Directed Personal Assistance as a loophole to avoid honoring their labor contracts and the living wage law passed by the Legislature.

Licensure will establish basic protections for consumers, so they know that if they sign up with a fiscal intermediary it has the expertise to assist them in running their program successfully. Fiscal Intermediaries serve the consumer, it is dangerous when the philosophy behind consumer direction is broken and the consumer answers to the fiscal intermediary.

Fiscal Intermediaries that operate properly also protect the system from potential misuse. They can properly monitor the consumer to ensure that the program is being run successfully, they can protect against fraud and abuse, and they can assist consumers and workers as they work together to implement a complex program.  Once such fiscal intermediary with a proven track record is Concepts of Independence based in New York City.

Two other provider types are being licensed in the budget:  urgent care centers and office based surgery centers.  A service that allows people to live independently in their own homes, avoiding a more expensive nursing home deserves the same priority consideration as the other types of center.

Need for Fair Overtime Hourly Wages for Consumer Directed Personal Care Assistants

The success of Consumer Directed Personal Assistance (CDPA) is largely dependent  on consumers’ ability to hire and retain workers.  Because of a growing wage gap, this ability is clearly being threatened and would compromise the integrity of the entire self-sustaining independent paradigm of
Consumer Directed Personal Assistance Program which my agency Concepts of Independence follows.

Changes at the Federal level by the Department of Labor will require full overtime to workers after 40 hours.  While we support this in theory, it is an unfunded mandate that current reimbursement does not allow for.  Because workers schedule their own workers, Fiscal Intermediaries will have no ability to restrict hours to limit the cost.  If they try, consumers will lose workers who will not be able to afford to work at the lower hours.

The future of CDPA relies on workers’ ability to hire and retain quality workers.

We are seeking two policies that would help make sure consumers can recruit and retain high quality workers:
1. Fund a pass-through from the State to fiscal intermediaries such as Concepts  of $1.35/hr., $1.94/hr. in New York City.  The difference in the amounts accounts for costs not factored into the Medicaid rate for fiscal intermediaries in New York City.

2. Require the Commissioner of Health and the Commissioner of Labor to establish a regional rate for personal assistants, based on the cost of living and other factors, and require managed care companies to reimburse at a level that allows fiscal intermediaries to reimburse consumer’s workers
at that rate.

Community First Choice proposed legislation provides New York State an extra 6% in Federal Matching funds for Medicaid.  This can be used to pay for the proposal, which we estimate would cost $33 million.  Revenues from CFC could be as high as $350 million, if fully implemented. Community First Choice actually mandates in line with Olmstead that supportive services for
consumers and patients with disabilities be provided within the home and community setting.

When the Department of Health issued their regulations for CDPA in 2011, they stated that CDPA was $2.16/hr. less expensive than traditional personal care, and that the savings grow with increasingly higher skilled levels of care.  This means that even at the higher level of reimbursement, the program is still the most cost-effective means of providing community-based long term care.

People performing traditional personal care tasks are now receiving substantially more than those
 doing personal care to nursing tasks, making it harder for consumers using the CDPA model to find and keep essential workers.

Salaries at the current level are threatened:
1. New Federal will dramatically change consumers’ ability to hire workers and increase the costs      associated by requiring full time and a half.  This unfunded mandate from the Federal government will cost hundreds of millions of dollars to implement.
2.Worker’s Compensation costs are going up 40%.
3.Unemployment costs are going up 20%.
4. Fiscal Intermediaries work on approximately 10-12% administrative overhead.  The only place they have room to trim is worker wages.

Economic and Social Parity Equals Power - Workers with Disabilities

On Wednesday March 12,  2014, President Obama signed an Executive Order raising the minimum hourly wage for all workers at the rate of $10.10 per hour, thus raising them from the poverty level. The order becomes effective on January 1, 2015. What is significant about the legislation is that the measure includes people with disabilities for the first time. Traditionally, the Department of Labor since the New Deal of FDR has allowed employers to work for subminimum wages below the accepted hourly wage standard, often around $5.00 an hour out of the belief that workers with disabilities, physical as well as intellectual, simply did not possess the stamina or basic knowledge to work competitively, a situation that is generally not true in the present time. For the federal government to tolerate the subminimum rate for over 40 decades, spoke volumes of how despite the rhetoric of inclusion and diversity, the disability community has traditionally been devalued by society that places a premium on fitness and an almost obsessive drive to reach reach the pinnacle of a chosen profession - in other words, the rat race! The Executive Order for the first time creates a baseline economic parity between a worker with a disability and his able-bodied counterpart. This gesture has been long overdue and should be applauded. I hope it is a harbinger of the trend towards full equality throughout all segments of the population. There may be a few kinks that will need to be ironed out during the implementation of the Order but if all stakeholders, employers in both government and private sectors collaborate harmoniously together, these bumps in the road will be minimized.

Irony in Society - Hate and the 50th Anniversary of the Dream

As I watched the media coverage of the 50th anniversary of the March to Washington where Martin Luther King Jr. made his iconic oration called "I Have A Dream" which effectively was the springboard of the civil rights movement, the progenitor of the ongoing disability rights movement. It was and still resonates as the symbolic battle cry against injustice, bigotry and discrimination in all its diverse forms. The speech heralded the promise of eguality of opportunity and the elimination of abject impoverishment as well as the narrowing of the racial divide and the economic chasm between the have and the have-nots. That promise is still unfulfilled as the speeches by President Barack  Obama and more pointedly by former President Bill Clinton attest. There is still a great deal of work to be done before the  stirring rhetoric matches the reality. To underscore this point as for as the disability community is concerned is the recent surfacing in the Internet of a hate flyer disseminated in Portland Oregn  by a group calling itself the Artemis Underground against people with disabilities who are recipients of various types of government benefits. They claim that such essential services "wrecks" the economy and therefore they should be institutionalized. Such thinking is indicative of the eugenic belief  popular during the 19th and early 20th century, at it zenith during the Nazi era that "inferior" races and those with less than "perfect" or Aryan physiques should be eradicated. Here is the link to the post that highlighted the hate flyer:

http://www.portlandoregon.gov/oehr/article/458971

This is just one example among many instances of backlash against the disability community.

Devaluing People with Disabilities

Hi, welcome back!

In my last post, I mentioned that I was going to discuss the means by which people with disabilities have historically been devalued by the very society they live in in spite of political rhetoric embodied in the Americans with Disabilities Act, the Individuals with Disabilities Edufcation Act, the Fair Housing Act and related enabling legislation with a national scope, and the United Nations Convention on the Dignity and Rights of People with Disabilitie on the international arena, all mandating equal access to participation in every sector of society and the right to lead a fully complete life comparable to able-bodied peers. These are all ideals to aspire towards but unfortunately they are honored in the breach or more often, simply not acknowledged by those charged to enforce them. The reality does not match the political rhetoric. Let me give you an idea of what I'm talking about.

1) The unemployment rate nationally for people with disabilities this month is 16%. Contrast that with a 7% for those without disabilities. I'm not absolutely certain about the exact figure but you get the idea that the gap is a significant one.

2) Access to transportation options in NYC is abysmal. Only 10% of the entire taxi fleet is wheelchair accessible at thuds point. This means interminably long waits on the streets before a single accessible cab is available . The Mayor and City Council President refuse toacknowlegde the problem as a civil rights issue requiring access to the mainstream. Disability advocates are fighting hard to redress this huge imbalance, working towards the goal of 100% accessibility comparable to the checker cab fleet in London. Accessible prototypes and a few innovative minivans were presented to the NYC Taxi and Limoisine Commission which ultimately decided to purchase inaccessible minivans for it's fleet, completely disregarding the needs of the disability community! Therefore, a person in wheelchair or scooter forced to use either paratransit vans(often unreliable and highly inflexible, requiring a day's reservation in advance) or public transportation utilizing fixed routes unilaterally cut by the Metropolitan Transit Authority as part of austerity measures a few months ago.

3)

Letter of Hate - Example of Devaluation of People with Disabilities

An absolutely shocking and hateful letter from an anonymous neighbor in Ontario Canada was posted as a handbill, targeting an innocent child who just happened to have autism, a developmental disability, went viral on the Internet last week. It was full of invective and strongly urged the family to put away the child "forever " claiming that his loud vocalizations, idiosyncratic behaviors and even his very presence "disturbed" the author of the missive and by extension the very community that family resides in. Upon investigation, the local police deemed that the letter although malicious in intent and deed "did not legally rise to the level of a hate crime" because a class group was not targeted. Such sentiment is indicative of society's systemic and often subtle devaluation of people with disabilities within which the child(nameless) is a member of by virtue of his cognitive dysfunction. This is a clear instance where although accessibility and equality regulations are on the books and often are mandated in various codes, one cannot legislate attitudes and bias against an often disenfranchised minority group. The incident should be taken seriously by Canadian society because if other similar occurrences surface unacknowledged, a eugenic frame of mind could easily resurface even within a democratic society. I truly hope that it is an isolated incident but make no mistake: vigilance by both the community and by human rights authorities must not lag.

Twin Atttacks on Disability Rights - National & International

It seems that during the last week or so, the hard-won dignity and enabling laws, both national and international, are under attack by Industry and conservative-backed lobbying interests seeking to unravel the political gains achieved by the disability community. The battle is being fought in The storied chambers and the weapons used are legislative statutes and proposed amendments that weaken or nullify existing laws through exceptions. For example, the American Hotel Association, an industry organization, stridently opposed the public accommodation requirement of the Americans with Disabilities Act, enforced by the US Department of Justice mandating that permanent modifications to existing pools or pools under construction be modified to facilitate easy access for patrons with disabilities, claiming a myriad of excused including that the presence of swimmers with disabilities are "unsanitary", among other flimsy excuses for noncompliance. This at at time when hotel visitors are climbing to record numbers! The problem is if such an exemption is codified, it might create a domino effect in which other provisions in the ADA would be nullified or compromised. The Disability community CAN NOT afford that risk.

A second issue being considered by the Senate Foreign Relations Committee is whether to ratify the United Nations Convention on the Rights of People with Disabilities, an Obama-backed measure. The CRPD, which embodies the basic rights and dignity of persons with disabilities worldwide, has been embraced by almost every member of the United Nations General Assembly with the US as one of the few that has not ratified it. The action is being opposed by right-wing lobbying groups such as the Home School Legal Defense Association which is against mandated intrusion into the family unit, a libertarian perspective. The irony is that the CRDP was developed on the ADA framework and actually expands on it with additional mandates.

OWS, Disability & Power Dynamics,

Here are my personal reflections on the exponential growth of the Occupy Wall Street movement and the role the disability rights movement can and should play in it. OWS has developed into a global phenomenon very quickly that provides a platform for the 99% of the wealth distribution. The members of the middle class and poor members of society are given a platform to express their rage, discontent and frustration over numerous injustices perpetuated by governing forces and the elite(1%) of their societies. Many of the inequities such as exorbitant bank fees, arrogant concentrations of power and income among the few echelons in power, are valid concerns and rightfully should be rectified through the political process of creating a coherent political agenda.

A number of disability activists, many of whom are personal friends of mine, are actively participating in the protests in an around Zuccotti Park and the financial epicenter, Wall Street itself on a weekly basis manning the barricades with protest signs highlighting systemic policy inequities fostered by society at large and especially by entities that subscribe to the medical, stigmatizing model of disability. What I find interesting and disconcerting is that every disenfranchised and minority group is represented and recognized by the governing body of the New York City OWS, the NYC General Assembly with one glaring exception: disability group is not mentioned in the NYCGA mega site (wwww.NYCGA.org) at all! It means that this group, 40 million strong nationwide is not acknowledged as a viable force to contend with. Such neglect is in line with historical trends where disability had traditionally been devalued by society at large, a residue of the eugenics era of the 19th and first half of the 20th century. Issues of great concern to the disability community are: access to employment opportunities (& adequate preparation for them through education)' health care coverage for well being and personal assistant services, affordable and accessible housing built according to universal design (disability-friendly) codes, utilizing public transportation modded such as subways and taxis, to cite a few of many issues. Key landmark legislation since the 1970s were passed creating unprecedented opportunities for many people with disabilities but relatively few were were able to take maximum advantage of them while the majority of them were either placed in custodial institutions or restricted within the confined of their home environments. Many battles were and continue to be fought by the grass roots disability rights movement. There have been successes and reversals with each succeeding generation.i believe that the experiences of the disability community is highly relevant to the Occupy Wall Street democratic force. Strategies a can be shared and the nascent anger can be shaped into a specific political agenda such as taxing the 1% to fund essential social services, will benefit all. Including a disability group in the NYCGA system is an excellent start in acknowledging our potential contributions to the cause long overdue. The late disability historian Paul K. Longmore and activist Frieda Zames would have agreed with this.

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.

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.

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.

Challenging Times for the Disability !community

Greetings¡
I've been thinking about the political landscape lately and it seems that the debt ceiling fallout and the consequent growing influence of rigid conservatives espousing extremist believes with Biblical overtones like Michele Bachmann, Sarah Palin and their more secular sympathizers and Ayn Rand acolytes like Paul Ryan, Ron Paul and his son Rand Paul, make for challenging times for the disability community. These extremists, using the debt ceiling agreement hammered between the Obama administration and the Republican-controlled House, as political cover,threatens to cut back or eliminate government entitlement programs such as Social Security, Medicaid/Medicare, EEOC, and other supports based on Keynesian economic principles. In addition, the very guiding vision of the Americans with Disabilities Act might be stripped of enforcement powers, rendering it a defanged paper lion when needed most. All these emerging trends which would become actuality should the conservative elements gain more influence in the coming elections in 2012, would eliminate fundamental protections that enhance the productivity of the disability community and further devalue it's members. It's a sobering scenario to contemplate nd for that reason the disability community and the country for that matter are at the crossroads with extremely high stakes hanging in the balance as never before.

How Disabilty is Devalued in Society

Hi again!

In my last post, Zi examined the dissonance or discrepancy between the ideals embodied in enabling legislation such as the Americans with Disabilities Act and related legislation as opposed to the real world shortcomings an individual with a disability faces on a daily basis. The fact that such a disparity that promotes inequality between the larger able-bodied community and the smaller minority class of is citizens with disabilitie, as defined by discrete limitations, is a reflection of hoW that class of 43 million people nationally has consistently been devalued in fact even if it is not explicitly stated on a regular basis.

The origin of such practices, called ableist(defined as behaving in a manner or initiating policies that are not congruent with the specific needs of a person with a disability) even if unintentional, harks back to the 19th century and early 20th century during which the eugenics movement flourished as the pace of urban industrialization proceeded apiece. During that period embodied differences were stigmatized by society and plans were developed to create a distance between the functionally able who epitomized the ideal man and those with obvious limitations who fails to reach the arbitrarily set benchmark. Charitable organizations were established to take take care of those deemed to unable to fend for themselves in a society based on the survival of the fittest belief. These facilities attracted large donations from wealthy citizens largely as a means to salve the often guilty conscience of the donor and maintain the clients/patients in subservient docile positions, tugging at emotional heartstrings as much as telethons o today in this sophisticated age. The structure of special education of children with disabilities at it's root, is an example of eugenic thinking that persists in spite of the mainstreaming heroic espoused by its leaders. It is as if equality is enforced by fiat rather than through genuine camaraderie although friendships do emerge from such situations by happenstance and through mutual respect; but that is usually the exception which proves the rule. The name "special" in special education connotes a distancing orientation rather than an integrative one. It puts children with disabilities on a virtual pedestal by virtue of their embodies distinctiveness rather than seeing these same limitations as points along a continuum, a difference of degree. Rehabilitation of which special education is a part of, has traditionally subscribed to the medical model which tends to classify conditions and syndromes in terms of deficits, a negative "objective" connotation. It makes sense since the custodians and agents of the eugenics movement who ran institutions and facilities were largely members of the medical profession.

Have we as a nation made any progress towards equal access? Technologically, yes but when one considers prevailing belief, no. This is why people with dsabiliies as a class are often devalued. Take a tiny but telling example: I stayed overnight at a 4-star hotel that had a sole bedroom configured for total wheelchair access. However it happened to be the only venue in the entire building without Internet capability: devoid of wireless network access which are taken for granted by hotel guests. I left the next day with a promise from desk manager that the disparity would be rectified shortly. Go figure!

Reality & Rhetoric in the Disability Wold: Dissonance

Hi there! Today I'm examining the disconnect between the day to day reality experienced by people with disabilities and the public perception of the rights of people with disabilities which are codified in enabling legislations that are considered rhetoric in that they are ideals or final benchmarks to aspire towards. The ideals of equal access are codified in national enabling legislation such as the Americans with disabilities Act (employment, architectural barriers, transportation and recreation), Individuals with Disabilities Education Act(early intervention from birth to 5 years and free appropriate public education through the elementary and secondary grade levels in public and private schools), Fair Housing Act(nondiscriminatory rent practices), Sections 503 and 504 of the Rehabilitation Act of 1973 (colleges and universities that receive federal funding for their programs and its international counterpart the United Nattions Convention on the Dignity and Rights of People with Disabilities(all-encompassing universal declaration mandate mandating equality and comprehensive access atall levels In the community.

The reality remains that all these laws are by and large honored in the breach: rarely followed in the the spirit in which it was intended by the disabled community. For example, the unemployment rate for people with disabilities is twice the national average, public transportation options for travelers with disabilities are increasingly limited in NYC with less than 10% of the existing taxi fleet accessible to wheelchairs and scooters (a situation disability activists are fighting to rectify the disparity) with the complication that the Metropolitan Transit Authority recently eliminated about 15% of its fixed bus and subway routes forcing its riders to use paratransit vans(notoriously unreliable and highly inflexible, unable to modify reservations made the day before and manufacture of both power and manual standards used for mobility needs ar not held to stringent quality control standards as to the same degree as before with the consequence that frequent breakdowns occur on a regular basis. Loaners often are of inferior quality.

All these fact suggest that there isa systemic devaluing of people with disabilities that hark back to the eugenic era of the 19th century. I will explore it's roots in my next post.

To be continued...