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.