LETTER: Uber, Lyft should be required to meet standards for transporting disabled in New York

Dear Editor:

The state Legislature is in the midst of formulating and approving new insurance laws to allow transportation network companies like Uber and Lyft to operate statewide. While I fully support new and innovative transportation methods being made available to all New Yorkers, I’m concerned about the legislation (A.6090A /S.4280A) being proposed by Assemblyman Kevin Cahill, D-Kingston, and Sen. James Seward, R-Oneonta.

The bill does little to ensure the transportation network companies provide accessible alternatives for senior citizens and individuals with disabilities who use power wheelchairs. The bill only requires that providers be able to store folding manual chairs in their vehicles, leaving the level and scope of accessibility and accommodations to the discretion of the network companies. Such discretion has led to lawsuits across the nation, including cases involving drivers declining to take individuals in wheelchairs or refusing others who are blind because they have service dogs.

No legislation should allow a company to operate within a given jurisdiction without proper legal checks and public assurances, and I believe it to be reasonable that, as a condition of transportation network companies being granted statewide operation, they be held to a certain level of operating standards for the population they will be serving.

Why allow an insurance bill to go forward and separately consider accessibility? The two issues should be tied and contingent upon one another — insurance for accessibility, accessibility for insurance.

If not now, when?

Keith Gurgui




The Perception of Violence and Brutality Through the Lens of Disability

In January 2013 a 26-year-old man by the name of Ethan Saylor was restrained by three Sheriff’s deputies in a Maryland movie theater after exiting and reentering to view the film “Zero Dark Thirty” a second time. An employee at the theater alerted police after seeing Ethan reenter the movie without paying. Unknown to all at the time, other than the caregiver accompanying him, was that Ethan had Downs syndrome. Through what was deemed uncooperative behavior and belligerence, the deputies reportedly restrained Ethan to the floor, handcuffing his hands behind his back, and through the struggle, caused Ethan to asphyxiate and die. The incident was later ruled a homicide but none of the officers involved faced a grand jury indictment and all three remain in the field today.

Unfortunately, these types of tragedies are commonplace, but often times disabilities are an afterthought for both onlookers and those intervening. Disability ethics and understanding are sorely lacking in today’s police forces. There is story after story of someone’s often invisible disability being interpreted as noncompliance. These can range from individuals who are deaf and hard of hearing being seen as ignoring requests and perceived as uncooperative, to cerebral palsy and muscular impairments that affect speech being seen as a state of inebriation and drunkenness.

Of the many police involved killings in America, people with disabilities are estimated to account for between a third and one half of victims. Unfortunately a lack of appropriate statistics has yet to be reliably collected by states, as a new study on media reporting on disability related deaths by the Ruderman Family Foundation explains ,”police departments may report voluntarily on killings, but before the passage of the 2014 Death in Custody Reporting Act there was no requirement to do so. Even now, it’s not clear the extent to which the act might help, as just knowing a death took place is less useful than being able to analyze cases.”

Law enforcement related violence is only one angle of the complex matter of misunderstanding proper interaction and conflict resolution when intervening during a crisis involving individuals with different types of disabilities. There is also the matter of widespread abuse and neglect suffered by those in institutions, a subject that has propelled the Independent Living movements’ emphasis on services being provided in less segregated and more community-based settings.

There is the infamous case of 13-year-old Jonathan Carey, a young boy with autism who was killed during aggressive restraint in the back of a van by his assigned caregiver while the driver turned a blind eye. The disaster became the subject of national media attention, following a surge of advocacy efforts spearheaded by Jonathan’s father Michael who successfully led passage of legislation that gave parents of individuals under state care access to previously restricted medical records. Before the passage of what is now known as Jonathan’s Law, families forfeited their access to their loved ones medical records in exchange for state-funded facility-based care operated under the Office of People with Developmental Disabilities (OPWDD).

It was later uncovered that Edwin Tirado, the state employee who ended Jonathan’s life, had worked over 200 hours over 15 days without one day off . The van’s driver, Nadeen Mall was previously fired by four different providers of services for individuals with developmental disabilities. As a result of a consolidated state and federal lawsuit, Edwin Tirado was convicted of manslaughter and Nadeen Mall of criminally negligent homicide when it was revealed that the two drove around for an hour before seeking emergency medical assistance for Jonathan.

These and so many other instances are just a shaving off of the tip of the iceberg that is a catastrophic mishandling of how the most vulnerable in our society receive the healthcare services that they require from other human beings who are often uneducated, overworked, mistreated themselves, and ignored by those in positions of decision-making authority. An article published by The Atlantic, entitled “How Misunderstanding Disability Leads to Police Violence,” explains how “harmful attitudes and assumptions, once established, can be difficult to replace even in the face of evidence to the contrary.” The article also reveals that according to statistics by the US Department of Justice “Americans with disabilities are victims of violent crimes at nearly three times the rate of their peers without disabilities.”

Reading this you might ask yourself, what leads someone to such violent behavior, or in cases of neglect, why someone picks a job where they willfully ignore issues they are employed to address? There is certainly not one singular answer, and the solution must be overwhelmingly complex for us to still be where we are. But in order to hopefully curb society’s tendencies towards the dehumanization of others that they perceive as different or threatening, we need to be willing to take the time and examine behavioral barriers that have led us here.

That means coming together and having meetings between mental health departments and the community, alliances of caregivers and law enforcement officers, advocates for individuals with disabilities and lawmakers, all willing to accept realities as they are and work towards a solution no matter how multifaceted. We have the economy and its overwhelming burden on the family unit. We have difficult and debilitating illnesses with little to no known remedies. We have a rigid and difficult to customize education system. We have corruption and conflicts of interest that go unaddressed. We have a healthcare system geared towards profit and the rationing of actual on-the-ground, person to person care.

All the while, technology seems to be expanding at a rate equivalent to the rate of our declining personal and social connection to one another. How can we be expected to lend a warm and understanding hand to another human if we increasingly hide behind our cell phone and computer screens expecting lines of text to replace face-to-face interactions? The current status of unrest would seem to call for a reevaluation of our priorities at the local, state, and federal levels. Every action has an equal and opposite reaction, and acts of violence are no exception. If we wish to live in a world of true peace and equality it is vital we find a way to do everything we can to avoid the use of force as a means towards reconciling conflict.

“Sometimes disability is visibly apparent, making it easier for law enforcement, to see—if not misinterpret. For others, disability is invisible. Whether it is written in the genetic code and is a companion since birth, or becomes a part of one’s experience later because of age, accident, or public service during the course of our natural lifespan many of us will move in and out of states of disability” – The Atlantic (2014)


Daily Freeman: Ready and Able

Disabled in accident six years ago, Lake Katrine man advocates for community services

By  Ariel Zangla, Daily Freeman

Left to right: Sue Hoger, Executive Director-RCAL, Keith Gurgui, systems advocate-RCAL, Lindsay Miller-New York Association on Independent living

Left to right: Sue Hoger, Executive Director-RCAL, Keith Gurgui, Systems Advocate-RCAL, Lindsay Miller, Executive Direector-New York Association on Independent Living

LAKE KATRINE >> It has been about six years since Keith Gurgui suffered a spinal cord injury in a diving accident that left him a high-level quadriplegic.

Since his accident, which changed his plans for the future, Gurgui has become an active advocate for other people with disabilities and a supporter of research into regenerative medicine. The 24-year-old, who lives with his parents in Lake Katrine, works part-time as a systems advocate for the Resource Center for Accessible Living in the town of Ulster and is a board member with the New York State Spinal Cord Injury Research Program. He also recently went to Washington, D.C. to attend the National Council on Independent Living’s annual conference, which this year celebrated the 25th anniversary of the federal Americans with Disabilities Act.

While at the conference, Gurgui spoke during a rally and march on Capitol Hill. He said he spoke briefly about how important it is for people with disabilities to live in their community, rather than being segregated in institutions. He also spoke about how important it is to invigorate young people with disabilities and teach them not to worry about potential failure.

NCIL March for justice to the US Capital building

NCIL March for justice to the US Capital building

Gurgui said the conference focused on young people who grew up with a disability but after the passage of the Americans with Disabilities Act. He said the conference took a look at their lives to see if there were gaps in the law. The National Council on Independent Living also was advocating during the conference for legislation called the Community Integration Act, as well as additional funding in the federal budget to support nationwide independent living services, Gurgui said.

“We want home and community-based services over institutional or nursing home care,” Gurgui said. He said the proposed law would require states and insurers that provide long-term services and supports to provide home and community-based services to individuals they cover.

It would also require those same states and insurers to offer such services to people currently in institutions. The Community Integration Act would amend the Americans with Disabilities Act to give those with disabilities the right to receive community-based services over institutional ones, where appropriate.

“If it wasn’t for RCAL (Resource Center for Accessible Living) or the Medicaid waiver I’m on that made my house accessible, I’d probably be in a nursing home,” Gurgui said. “Since I’ve been home, I have a job as a systems advocate.” He also received his associate’s degree and plans to go back to college, likely at SUNY New Paltz, once the grant for his systems advocacy job expires. Gurgui said he would likely study pre-law.

Gurgui had graduated high school and was on a summer vacation with his family prior to beginning studies at Philadelphia University to become a physicians assistant when his accident occurred. Now, as a systems advocate, Gurgui works with a network of advocates across New York to educate local and state policymakers on the consequences and impacts of disability and civil rights policy. His main area of focus has been on electoral reform.

“We try to emphasize these are the things that people are able to do when they’re in the community,” Gurgui said. He said home and community-based care is also cheaper for the state. Gurgui said it is his understanding that New York spends the most money on institutionalized Medicaid recipients and gets the least results.

Annual regional advocacy award presentation with Region II Representative Cliff Perez

Annual regional advocacy award presentation with Region II Representative Cliff Perez

On top of participating in the march and rally, Gurgui spent time during the conference in meetings with representatives of U.S. Rep. Chris Gibson, R-Kinderhook, and U.S. Sens. Charles Schumer and Kirsten Gillibrand, both Democrats of New York. He also took part in a workshop where he, along with other members of the Election Reform subcommittee for the National Council on Independent Living, made a presentation on the 2016 electoral landscape. Gurgui said he talked about the voting demographics and the change in voters with disabilities versus those without in the 2000 election compared to in 2012.

It was also at the conference where Gurgui received a regional advocacy award in recognition of his ongoing work.

“I was honored,” Gurgui said. He said the award recognized his advocacy work, which predominantly focused on voting rights. He said he has done a presentation on the ballot marking device, which is an accessible machine people with disabilities can use to vote in federal elections. Gurgui he has also spoken with nursing students at Ulster County Community College to give them a perspective on people with disabilities in home care and has testified for governmental agencies when they ask for input on policies.

While the trip to Washington was an opportunity to speak on issues important to him, Gurgui said it was also a chance for him to travel without his parents since his accident. He said he has medical needs his personal care attendants cannot handle, so his parents have always taken care of that because they are both registered nurses. For his trip to Washington, the Bruderhof Community was able to provide two people to travel with him, one of whom was a registered nurse, Gurgui said.

“So the big deal is I was able to go on a trip by my own, without my parents,” Gurgui said. He said that was a big step in his own evolution toward independence. Gurgui said he is also thankful to the National Council on Independent Living, which also gave him a $1,200 scholarship to help cover his travel expenses, as well as to the New York Statewide Independent Living Council, which provided him with a $250 scholarship for his trip.

“I’d like to inspire other people to get out if they can,” Gurgui said. He said he wants policymakers to know there are a lot of people with disabilities who cannot get out and he is one of their voices., Executive Director executive

RCAL Press Release: RCAL’s Systems Advocate Nominated for National Advocacy Award


The National Council on Independent Living (NCIL), the oldest and largest cross-disability grassroots organization in the nation, is holding its annual conference to celebrate the 25th anniversary of the Americans With Disabilities Act in Washington DC, beginning July 26, where it will hold several large-scale events including a march on Capitol Hill as well as weeklong workshop sessions and an award ceremony for youth advocates. The conference, entitled “Generation ADA; Rise Up!” is seeking to draw nationwide attention to the progress as well as shortfalls of the ADA in the 25 years since its signing into law in 1990. Keith Gurgui has worked part-time as the Systems Advocate at RCAL for the past four years and has been nominated by NCILs Region II representative Cliff Perez (representing New York and New Jersey) for the regions annual advocacy award. As part of the award, Keith will travel to Washington to attend the conference and to accept the award, as well as participate in meetings with Congress and the march on Capitol Hill.

“I’m extremely honored to be nominated for this award. I’m proud to represent RCAL at the conference. I’m also there to represent all people with disabilities and hope that we can get our message to lawmakers in Washington that though our country has been a leading light in the world for progress there is much more that needs to be done in order to maintain and further that position if we hope to give credence to our promise of access and inclusion for all. I’m looking forward to the opportunity to speak with members of congress and their staff face-to-face for the first time in my life, and I think that’s a testament to NCIL and the opportunities the Americans with Disabilities Act can help provide,” Keith said.

As Systems Advocate, Keith works with a network of advocates across the state to educate local and state policymakers on the consequences and impacts of disability and civil rights policy. He has become especially active in the area of electoral reform where he has recently taken on the role of Co-chair of the Election Reform sub-committee for the New York Association on Independent Living. The subcommittee’s focus is to increase the architectural and programmatic accessibility for all eligible voters during elections as well as for individuals seeking to register for the first time. For the past year or so Keith also began participating on NCIL’s Voting Rights Subcommittee after being requested to take the place of the outgoing member from New York. Keith has been working with members in preparation for the upcoming NCIL conference in order to develop a workshop event during one of their sessions.

Keith particularly enjoys speaking with students including those at his local community college in Ulster County, touching on disability matters and answering questions specific to his own experience and injury. In August 2009 at the age of 18, Keith suffered a spinal cord injury while swimming in Bethany Beach, Delaware. Though a difficult recovery, he receives satisfaction from being able to teach others the lessons he has learned from his experiences and through the work he has done at RCAL.

RCAL is a not-for-profit Independent Living Center founded in 1983 dedicated to serving individuals with disabilities by providing services towards advancing their Independence and inclusion into the community. RCAL has a long tradition of consumer controlled and directed service delivery.

Barbecue at RCAL on June 26 from 11:30 AM-2:30 PM in celebration of the 25th anniversary of the Americans with Disabilities Act

RCAL will be hosting a barbecue and open house on June 26 from 11:30 AM to 2:30 PM in celebration of the 25th anniversary of the ADA.   If you’re not doing anything and would like some free food come on over 🙂

We are located at:
727 Ulster Ave., Kingston, NY 12401 (hidden behind the flowers store)

BBQ Flyer – 25th Anniversary of the ADA

The Changing Environment of Labor Standards for Home-Care Workers

Congress passed the Fair Labor Standards Act (FLSA) in 1938 to establish minimum standards of living for the American working class, including the 40 hour work-week, over time regulations, wage protections, and youth employment restrictions. In 1974, Congress amended the law, providing a limited exemption from certain requirements “for workers performing casual babysitting, and companions for the aged or infirmed.” This exemption, referred to as the companionship exemption, excludes domestic care workers from overtime pay requirements. This class of work has grown and evolved immensely over the decades, becoming ever more relevant in the care of the nation’s most vulnerable citizens.

With the 1974 amendment, the Secretary of Labor was left to define what functions an exempt companion could perform, creating regulations which were published in 1975. But today, this exemption is used for nearly all workers performing personal care for individuals living at home. Tasks can range from minor housekeeping such as laundry and sweeping, to direct personal care such as bathing, feeding, dressing, and many hands-on activities requested by the consumer to fulfill his or her desired instrumental activities of daily living (IADLs).  This is much different from Congresses initial intent when the amendment was first passed.

Homecare is one of the largest growing fields of employment in America today, often paying between $8 and $10 an hour, with patient caseloads managed by a Licensed or Certified Home Health Care Agency, referred to as a third-party employer. Most commonly utilized are Personal Care Attendants (referred to as PCAs), approved by Medicaid to be provided to individual who require as much as 24 hour around-the-clock care. An individual requiring home care is first assessed and approved for services by their Local Department of Social Services (LDSS) which then contracts with one or more available Home Health Care Agencies within their jurisdiction to cover the necessary shifts the individual is approved for.

In New York State a PCA certification can be acquired without a high school diploma or GED and appeals to many low income individuals who have limited access to employment opportunities. As such, many individuals who gain successful employment as PCAs may work well over 40 hours in any given week. Often times, employees are asked to cover shifts when another caregiver at a different location (working for another consumer but employed by the same agency) calls out. Nor is it uncommon for workers to be required to stay if the next scheduled caregiver does not arrive. For the consumers dependent on these workers for independence and safety, the risks of abandonment and neglect are ever present due to an overworked and under-compensated workforce.

Currently within the United States, there are several societal trends straining the nationwide healthcare system including a generation of Baby Boomer retirees becoming eligible for Medicare combined with an ever increasing aging population already enrolled in Medicare and receiving long-term care. In addition there is an increasing emphasis on providing less restrictive healthcare settings to accomplish both cost savings and to divert or prevent unnecessary and costly institutionalizations. All of these factors have begun increasing the demand for Home and Community-Based Services such as home healthcare.

The growing dissatisfaction of caregivers and the clients they serve in regards to their inadequate compensation led activists to petition the federal government. Labor and disability rights advocates stressed the need for a review of existing Department of Labor regulations in order to prevent such widespread use of the companionship exemption and the subsequent deprivation of overtime pay to nearly 2 million direct care workers across the country.

The solution came in the form of newly revised regulations developed by the Department of Labor’s Wage and Hour Division in conjunction with the Department of Health and Human Services. After the release of an initial proposal and stakeholder comment period, the new rules were published in October of 2013. The revised regulations clarified the definitions of “companionship services”, as well as valid employee reimbursement and the distinction between third-party versus joint employers. The newly published regulations were given an extended effective date of January 1, 2015 to give governments and agencies time to comply.

Unfortunately, the Department of Labor’s clarification and limitation on what qualified as companionship care was not linked to any alteration in the Medicaid reimbursement rate that would be necessary for the influx of non-exempt workers now eligible for proper overtime. This meant that hundreds of thousands if not millions of healthcare workers would soon become eligible for greater pay for hours worked over 40, but the primary insurance responsible for their employer’s reimbursement (Medicaid & Medicare) were not changing their formulas to align themselves with the Labor Department’s new definition and its applicability.

In response, Home Health Care Agencies across the United States began instituting policies in anticipation. Many began limiting their employees to working no more than 40 hours, while offering those that still would “full-time employment packages” that included a cut in their hourly pay in exchange for promises of vacation days or discounts on health insurance.

For the consumers and individuals with disabilities relying on homecare to remain independent and safe in their homes, many were forced to accept additional aides in situations where an employee working over 40 hours was reduced, requiring an additional person to be trained to cover the hours that one caregiver once worked. Such a situation can be difficult for some. For example, a consumer with a Traumatic Brain Injury receiving split-shift 24-hour care and help from family to train new caregivers, is forced to introduce a greater number of workers into the mix, which is not only difficult and burdensome, but creates uncertainty and increases the likelihood of caregiver turnover, threats to one’s security, and chances for infections that come with increased traffic of individuals going in and out of one’s living space.

Advocates were floored. A policy that so many had been pushing for decades was so poorly considered by government officials that advocates now found themselves having to backpedal, now pushing for the withdrawal or postponement of the Department of Labor’s regulation. Supporters of proper compensation and the initial changes to policy were now realizing that the proposed solution was putting employees at greater risk of losing hours and receiving pay cuts.

It did not take long for opposition to the new rule to form. On June 6, 2014 the Homecare Association of America, along with several other national organizations, filed a lawsuit with the Department of Labor over its changes to the Fair Labor Standards Acts companionship exemption rule, asserting:

“the new rule will have a deeply destabilizing impact on the entire home care industry, which the Department has grossly understated in its regulatory analysis, and will adversely affect access to home care services for millions of the elderly and infirm.  The new Rule will lead to increased institutionalization of those needing home care, as many will no longer be able to obtain the currently available levels of access to affordable, quality care in their homes. Others will be forced to accept care from multiple caregivers instead of one trusted individual, as employers will be forced to reduce work hours to avoid overtime costs. For similar reasons, the new Rule will also adversely impact many home care workers and will increase staff turnover to the detriment of consumers.”

On December 22, 2014 the District of Columbia federal district court granted the plaintiff’s motion and vacated (suspended) the Department of Labor’s regulation barring third-party employers (homecare agencies) from claiming exemptions for overtime and minimum wage requirements for employees providing “companionship” services. With respect to the Department of Labor’s singling out of all third-party employers, Judge Richard J Leon stated in his opinion for the court, “Here, Congress has directed the Department of Labor to define statutory terms, and then include “any employee” who provides services according to those definitions within the scope of the exemptions. The focus is on the type of services provided, not who pays the check. As such, Congress has clearly spoken on this issue, and the department’s new, conflicting rule therefore cannot survive.”

Currently, the district court’s decision has been appealed by the Department of Labor and is currently undergoing review in the Court of Appeals for the DC circuit. Analysts following the suit (Homecare Association of America v. Weil) have stated that the court is likely to decide the case in June of this year. Meanwhile, for guidance to consumers and agencies, author and attorney Brian Steinbeck, one of many following the regulatory landscape had this to say;

“Notwithstanding these proceedings, home care agencies must continue to comply with state labor laws in effect. In New York, for example, notwithstanding the temporary stay of the “companionship services” definition, the home care industry must continue to pay minimum wage (now $8.75 per hour) and overtime (at a rate of one and a half times the minimum wage). Should the DOL prevail, the home care industry will be required to increase overtime pay from one and a half times the minimum wage to one and a half times the employee’s regular rate of pay.”(wagehourblog.com January 6 2015)

As literally millions of Americans wait to see what happens one thing is for certain, regardless of what the courts decide, it is up to Congress and the American people to actively push for equal pay for direct care workers.. It is starkly evident to those individuals who receive it, that the homecare system in its current form is not only unsustainable but tragically unsafe and uncertain. If we are to expect the best possible system for the care of individuals with disabilities and those that require personal attendants, nurses, or other supports, those in the community responsible for providing that care must be equally considered.

For more information on the Department of Labor’s final rule and the status of the companionship exemption you may call the agencies Wage and Hour Division helpline: 1-866-4US-WAGE (1-866-487-9243) or go to http://www.dol.gov/whd/homecare

Disability Employment Disparities Explained

According to data compiled by the U.S. Census Bureau and the Disability Compendium (http://www.disabilitycompendium.org/) the 2012 resident population in the United States was estimated to be nearly 314,000,000 individuals, of which over 38 million (12.3%) indicated currently living with a disability. Since the stock market crash of 2008, a primary initiative of both the state and federal government has been to create jobs and decrease unemployment, yet stark disparities emerge when examining job figures as it relates to individuals with disabilities.

“In 2012, of the 20,007,119 individuals with disabilities ages 18 to 64 years living in the community, 6,551,987 individuals were employed- an employment rate of 32.7%. In contrast, of the 175,690,083 individuals without disabilities ages 18 to 64 years living in the community, 129,274,939 individuals were employed-an employment rate of 73.6 %.”

New York State mirrors the national employment statistics, with a population of 19,570,261, the numbers of working age (18 to 64) individuals with a disability was measured at 1,043,603 of which 322,875 indicated currently being employed, a rate of 30.9%. Working age New Yorkers without disabilities, of which there were 11,358,974, have an employment rate of 72.7% with 8,260,794 residents employed. That’s a gap of over 40% between New Yorkers with disabilities and those without. So what is being done?

Both the Employment First Executive Order #136 and Olmstead Executive Order # 84 have been administrative initiatives by Governor Andrew Cuomo, geared towards increasing the integration of individuals with disabilities into both the mainstream community and workforce. In his 2014 State of the State address, Cuomo committed to taking additional steps in pursuit of supporting veterans with disabilities who have found themselves struggling to reach gainful employment. Employment initiatives all well and good, but the core of the crisis remains in the shadows. What is it that is preventing people with disabilities across the country from reaching successful and long-term employment, and why?

A recent study by the Center for Independence of the Disabled New York (CIDNY) surveyed individuals with disabilities across the state on what they felt were areas of greatest challenge and disparity. Topping the chart in the category of disability-based discrimination ( areas like healthcare accessibility, voting access, education, etc.) was workforce discrimination. The extent to which job discrimination actually exists in the United States was made evident in a study by Rutgers University in 2003 in which one third of employers surveyed said that “persons with disabilities cannot effectively perform the required job tasks.” The study goes on to list “the second most common reason given for not hiring persons with disabilities was the fear of costly special facilities.”

Regardless of employer suspicions, the actual figures speak for themselves. The U. S. Department of Labor’s Office of Disability Employment released a study in 2010 developed by its Job Accommodation Network (JAN) which reported “that a high percentage (56%) of accommodations cost absolutely nothing to make, while the rest typically cost only $600. Further studies report that employees with disabilities have comparatively better retention rate, “reducing the high cost of turnover.” One such study in 2002 revealed “that after one year of employment, the retention rate of persons with disabilities is 85%.”

If the point has not yet been made clear that individuals with disabilities can not only work but at times exceeded the performance of their able-bodied counterparts, history provides us with countless examples of successful small businesses owners with disabilities, not to mention at least 11 US presidents (from George Washington and Thomas Jefferson  to Ronald Reagan and Bill Clinton). So if you’re one of the many Americans reviewing resumes and job applications, don’t be too quick to judge who may or may not be the most efficient or easiest to fit in, because you may just be passing up the next most famous inventor or future world leader.

Article by New SSAN Advocate Myra Kovary from Ithaca- Ratify the CRPD without RUDs

I represented a non-governmental organization at the United Nations from 2002 – 2006 during the negotiations of the text of the Convention on the Rights of Persons with Disabilities (CRPD).  The CRPD is a visionary document that involves a paradigm shift from a medical model of disability to a social/human rights-based model and, contrary to claims made by many advocates in the US disability community, is a significant step forward beyond the Americans with Disabilities Act.  A US ratification of the CRPD with the Reservations, Understandings and Declarations (RUDs) approved by the Senate Committee on Foreign Relations would be a betrayal of what we international disability rights activists fought so hard to achieve during the negotiations of the text of the CRPD.

One of the proposed RUDs (Declaration #2) states that, “In view of the reservations to be included in the instrument of ratification, current United States law fulfills or exceeds the obligations of the Convention for the United States of America.”  It is not true that US law fulfills or exceeds its obligations under the treaty.

For example, the CRPD is based on the general principles of non-discrimination and respect for individual autonomy, including the freedom to make one’s own decisions.  The CRPD recognizes that a substituted decision-making model (where others can make decisions for a person with a disability or others can act in the best interest of the person) must be replaced by a supported decision-making model.  Article 12 (on equal recognition before the law) recognizes that “persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.”  The right to legal capacity is indispensable for the exercise of all other human rights.  Legal capacity includes the right to make one’s own decision and to consent to medical care.  Article 12 is also visionary in that it requires governments to provide persons with disabilities access to the support they may require to exercise legal capacity and requires safeguards to ensure that such supports respect the rights, will and preferences of the person.

The CRPD Committee, the body of independent experts that monitors the implementation of the treaty, is made up of 18 independent international representatives elected by the UN member states that have ratified the CRPD.  To date, 151 of the 193 UN member states have ratified the CRPD, not including the US.  In a General Comment on Article 12, the CRPD Committee stated that, “Historically, persons with disabilities have been denied their right to legal capacity in many areas in a discriminatory manner under substituted decision-making regimes such as guardianship, conservatorship and mental health laws that permit forced treatment. . . .  States parties must respect the legal capacity of persons with disabilities to make decisions at all times, including in crisis situations. . . . States parties must abolish policies and legislative provisions that allow or perpetrate forced treatment, as it is an ongoing violation found in mental health laws across the globe, despite empirical evidence indicating its lack of effectiveness and the views of people using mental health systems who have experienced deep pain and trauma as a result of forced treatment.”  The UN Special Rapporteur on Torture also underscored the right to freedom from forced psychiatric interventions, calling for an absolute ban and affirming that forced interventions constitute at least inhuman and degrading treatment and may amount to torture.  Mental health laws in the US discriminate against persons with psychosocial/psychiatric disabilities by expressly permitting and condoning involuntary psychiatric interventions.

Another proposed RUD (Understanding #6) addresses the relationship between the US and the CRPD Committee stating that, “The United States does not consider conclusions, recommendations or general comments issued by the Committee as constituting customary international law.”  This RUD restricts and redefines customary international law in the international human rights framework.  It would not only affect the CRPD but it sets a disturbing precedent that would affect UN human rights treaties that may be ratified in the future.

Additionally, Article 25 guarantees persons with disabilities the right to the same range, quality and standard of health care as provided to others, including in the area of sexual and reproductive health.  The CRPD does not specifically mention abortion, however abortion is legal under US law, so women with disabilities would have the same rights to abortion as other women do.  Anti-abortion advocates on the US Senate Committee on Foreign Relations proposed an amendment stating that the phrase “sexual and reproductive health” does not include abortion and cannot “be interpreted to constitute support, endorsement, or promotion of abortion, and in no case should abortion be promoted as a method of family planning.”  The Senate Committee on Foreign Relations rejected that amendment but compromised by included a RUD (Understanding #7) stating that, “Nothing in the Convention, including Article 25, addresses the provision of any particular health or procedure.  Rather, the Convention requires that health programs and procedures and procedures are provided to individuals with disabilities on a nondiscriminatory basis.”  Non-discrimination is a general principle of the entire treaty.  From a women’s rights perspective, singling out Article 25 with regard to non-discrimination sets a disturbing precedent.

Much of the US disability community is now lobbying for ratification of the CRPD by the full Senate.  US ratification with the proposed RUDs disrespects the aspirations of people with disabilities in the US and abroad and undermines the foundations of international human rights law.  Maria Reina, one of the leading international disability rights activists involved in the negotiations of the text of the CRPD, summed it up nicely when she wrote, “It looks like the United States believes that the standards valid for everyone else ratifying the Convention do not apply to them. . . . I kindly ask our mates from the US, particularly those running the campaign, to slow down, and as we say in soccer, stop the ball and see the rest of the field.  Any ratification is not a good ratification.”  The values of the independent living movement should lead us to question our support for the current ratification process.

Links to websites with further information:

Text of the UN Convention on the Rights of Persons with Disabilities: http://www.un.org/disabilities/convention/conventionfull.shtml

Current version of the RUDs as proposed by the US Senate Committee on Foreign Relations as of July 28, 2014: https://dk-media.s3.amazonaws.com/AA/AG/chrusp-biz/downloads/290272/CRPD_marked_up_July_28.pdf

The CRPD Committee’s General Comment on Article 12 of the CRPD – 19 May 2014: http://www.ohchr.org/EN/HRBodies/CRPD/Pages/GC.aspx

The Campaign to Repeal Mental Health Laws petition to ratify the UN Convention on the Rights of Persons with Disabilities (CRPD) without Reservations, Understandings or Declarations (RUDs): http://www.change.org/p/us-senate-ratify-the-un-convention-on-the-rights-of-persons-with-disabilities-without-reservations-understandings-or-declarations-ruds

June 2013 sign-on letter from the Center for the Human Rights of Users and Survivors of Psychiatry regarding the RUDs: https://dk-media.s3.amazonaws.com/AA/AG/chrusp-biz/downloads/282421/signonletterCRPDnoRUDs061113.pdf

Maria Reina’s November 13 2014 statement regarding the US ratification of the CRPD: http://repealmentalhealthlaws.org/?page_id=97

Submitted by Myra Kovary
Statewide Systems Advocate
Finger Lakes Independence Center
215 Fifth Street
Ithaca, NY 14850

Daily Freeman Letter: Voter Registration

LETTER: You won’t have a voice if you don’t register to vote

Dear Editor:

The deadline for New Yorkers to register to vote in the 2014 midterm elections is Oct. 10, and it is my hope and effort that all those concerned with the state of affairs within the United States of America, and especially New York state, wholeheartedly consider ensuring that their voice be heard on Nov. 4.

On both the local and federal level, we have a diner menu full of issues for you to indulge your political palate. From the future of state health care exchanges, public and private security, employment numbers and jobs programs to international treaties and foreign intervention, Congress and legislative bodies around the country are yearning for some popular advice.

Heading to your locally designated, Board of Elections-certified polling site and telling your community leaders who you would like to speak on your behalf can be a satisfying and often surprising civic action. So don’t get too overwhelmed by the coming cold or onslaught of daily chores, because in today’s world, it’s times like these I feel fortunate to have a say.


Letter to the editor and readers, Community First Choice

Dear Editor,

I have no qualms with admitting to or speaking about the high level of needs I as a quadriplegic need in order to survive and thrive as an active member of society. But for several years now since my transition home from rehabilitation after a severe spinal cord injury left me paralyzed from the neck down, I have come to learn that it is not living with the direct physical limitation that my disability places on my life that is most difficult. Rather receiving and maintaining adequate and continuous (24-hour split shift) personal care that meets all of my complex medical needs is what accounts for the majority of the current stress in my life today.

Within the Affordable Care Act lies an opportunity to develop a service delivery system that would finally ensure all individuals the right to live in the community by establishing policies and guidelines to ensure that health services are available in the most integrated and least restrictive setting appropriate to their needs as enshrined by the United States Supreme Court’s 1999 Olmstead decision. The Community First Choice (CFC) Option is a community-based Medicaid state plan service which includes hands on assistance, safety monitoring, cueing, assistance with activities of daily living, instrumental activities of daily living and health related functions based on functional need, not diagnosis or age.

What’s the difference from programs we have today? CFC applies to all types of disabilities, as opposed to programs that focus on various populations (traumatic brain injury, developmental disability, mental illness, all have separate programs). For enrollment into CFC, enrollees must have needs that rise to the level required for nursing home care. The intent of the program is to create an alternative to institutionalization by incentivizing the state by offering its citizens greater freedoms as well as increased federal support. Specifically, CFC offers participating states an additional 6% federal match (the state covers 50% of the cost and the federal government offers an additional 56%) that both attracts states to enroll individuals to the community-based program while at the same time reducing costly institutional care.

To ensure community supports through CFC are adequate enough to address the needs of those transitioning out of nursing homes and other long-term care facilities, advocates have been pushing state lawmakers to amend the Nurse Practices Act to allow for an advanced class of Home Health-Care Aides that, with additional training and supervision, would be certified to do tasks currently considered “skilled”. In the world of home care, Personal Care Aides and Home Health Aides cannot engage in activities considered outside their scope of practice, such as catheterization, administering medication, suctioning ventilator dependent patients and many other tasks….although Consumer Directed Personal Assistance Services (CDPAS) already allow patients to direct their aides to do skilled tasks as long as they agree to taking on the responsibility of hiring, managing, and terminating their own caregivers. Without allowing caregivers under the CFC program to do skilled tasks (under the supervision of a Registered Nurse, similar to the way Physicians Assistants operate under Medical Doctors) additional resources will have to be spent approving and paying for different professionals to do different tasks at different times of the day adding a mountain of costly administration as well as forcing enrollees to be cared for by multiple different individuals for different tasks.

On a personal note, I currently live with my parents who manage my skilled needs such as my medications and daily bowel regime without whom I would need a daily nurse to come in to my home (preventing my personal care attendant to be present because of billing purposes) and have to worry about an additional line of professionals entering my home where under the Community First Choice Option I could delegate my personal care as well as all of my skilled needs to my current caregiver who is currently prohibited from doing many of the things I need to remain healthy in my own home. A day of action is in the planning stages where advocates will once again gather to make their case to lawmakers.