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Friday, February 5, 2016

Reflections on the Medicalizing Phenomenon and the Inner Person

it has been quite some time since I wrote and posted in this blog. Been quite busy engaged on many initiatives & being a spectator observing the morphing  political landscape as the Obama administration winds down during the remaining months until the Presidential election come November 2016. But this blog further examines the distancing effects of medicalizing a person's life. The primary focus on the residual or remaining functional abilities of the individual with a disability, often objectified as a "patient" or "client" in a rehabilitation or medical setting, often puts in the back burner, the vital and ever-evolving essence of the spirit inhabiting personhood. The living environment(furniture, ambience), the tools needed to enable one to manipulate the immediate surroundings, in whatever form these tools may be, are reflections of that essential spirit. We need to remember such a vital truth, whether in the related disciplines of interior design and architecture. While the premise of universal design is predicated on helping one compensate for or supplement one's limitations in terms of a segment of a population, one must never lose sight of the potential richness of any person's life, whether affected by a disability or not. The key is how one handles the cards given to him/her. It is that which determines the resiliency of the person in the face of challenges equally from within and without. Freedom to create one's destiny to the extent possible, should be encouraged & cherished.

Tuesday, April 28, 2015

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.

Tuesday, February 25, 2014

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.

Monday, February 24, 2014

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.

Friday, February 14, 2014

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.

Sunday, September 1, 2013

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:

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