someone wake up the lawyers

When government interprets the law, it often takes liberties that satisfy its own needs even if they aren't defined in legislation. This is done through guidance, protocols, regulations, and other avenues. Often, it's done to be helpful but occasionally the consequences can be tragic and, thus, unlawful.

An emerging example of congressional intent gone awry is the implementation of Electronic Visit Verification (EVV). Specifically, in the 21st-Century Cures Act passed in 2016, Section 12006 Electronic Visit Verification is very clear about what is required and that it is to be” minimally burdensome” it also requires that “it takes into account existing best practices and electronic visit verification in the state.”

The law requires that six data elements be collected during each visit of a personal care services worker, and they are:

1.    type of service performed;

2.    the individual receiving the services;

3.    the date of the service;

4.    the location of service delivery;

5.    the individual providing the service and

6.    the time the service begins and ends

As States began rolling out EVV systems they encountered fierce resistance from non-agency personal care services beneficiaries, so the Centers for Medicare and Medicaid Services (CMS) stepped in with guidance to states on how to implement EVV first in 2018 and then again in 2019. In the first guidance, there was no requirement that states had to use Global Positioning Systems (GPS) in the fourth requirement requiring location of service delivery.

California, which has approximately 400,000 personal care services beneficiaries was and continues to use a web-based portal that both individuals receiving the service and those providing them can log into and it meets all the data elements required by law. CMS didn't think so because it doesn’t use GPS for location; their portal simply has a drop-down menu that gives the options of home, community, or both. CMS failed the legal requirement to “take into account existing best practices.” In 2019 they issued additional guidance stating that “web-based” electronic timesheets using dual verification” are not permissible. California was declared non-compliant overnight.

The CMS 2019 guidance sealed the deal for requiring GPS and infringing on the privacy of over 4 million personal care services workers, and by default, beneficiaries with disabilities. In the disability community, California EVV is the gold standard because it captures the data required by Congress yet still allows for a manageable system and maximum consumer control without compromising our right to privacy.

EVV must become a lightning rod to spark a revolt against the constant ”medicalization” and loss of control and privacy in our lives. Independent living is being kicked to the curb by managed care titans, health insurance companies, pharmaceutical giants, and even our own government. If this slow but steady erosion of our civil rights is allowed to continue unchecked, we’ll be in too deep to crawl out. It is not uncommon for people with disabilities who were living independently in the community with personal care services prior to the requirements of EVV to be defaulting into nursing homes because we can’t find workers who agree to be tracked by satellite.

We celebrated the 31st anniversary of ADA last month yet our civil rights and independence are under siege. The Olmstead decision was made 22 years ago. How much sense does it make to fight to get out of a nursing home and live in the community only to find that you can't get workers to keep you out because they refuse to be tracked by satellite like a criminal. It seems like the legal community is sitting by idly and waiting for more casualties to mount before they rise to the level of a class action Olmstead lawsuit.

Stop waiting and start acting, our lives and independence are at stake. One person is one too many!

What is Independent Living?

The better question is what isn't independent living? It's morphed in a frightening direction from its foundational philosophical tenets of control, choice, advocacy, peer support, and cross-disability to a generic slogan that implies Independence. Assisted Living companies call their products Independent Living even though there's virtually no control, choice, or even the ability to advocate for change. This is true for healthcare, housing, human services, and on and on.

People with disabilities are losing our identity and control in order to qualify for the basic services necessary for community living. Medicaid, the biggest source of healthcare and long term services and supports for people with disabilities has become so ”medicalized” that it forces us into patient roles where clinicians make eligibility decisions and policymakers that are constantly looking to make cuts in programs to save money under the guise of managed-care and continue to roll back services by changing financial eligibility, imposing spending caps, and using algorithms to cut back on service hours.

We are forever in debt literally and figuratively to the government for our existence. We’re constantly fighting just to live outside of a nursing home or an institution. It’s never-ending and rigged to keep us in poverty which, of course, is the solution. If it were easy for us to get jobs we wouldn't be poor and wouldn’t need to rely so heavily on these very programs that are stealing our freedom and human rights. So, what’s the problem? Federal and state government is; from archaic laws and eligibility criteria to misguided policies especially with regard to employment. We have so many disincentives to work that it's just easier and more necessary to stay home and do nothing. In order to have a poverty-level income, we have to take a vow to not work. If you go to work, you lose it all for the most part. It truly is a cycle of poverty that goes from generation to generation.

It comes down to jobs and building wealth. To rise up out of poverty is practically impossible if you have a significant disability. We should be focused on jobs and fight to level the playing field to employment. There's no reason why we have to perpetuate poverty for another generation. It's our time to stop it now! The time to get back to the basic fundamentals of Independent Living is now. As a movement, we have power; we’ve used it time and time again. We came together to force the implementation of 504, we used it to get the ADA passed, we used it to stop segregated housing and employment and we must use it to finally unravel the myriad of policies that keep us from working and receiving long-term services and supports we need to live independently at the same time. Income from working must not continue to disqualify us for long-term services and supports.

I think disability rights advocates know what the problems are, but we haven't been able to come together to solve them. We can’t afford to wait for a better time. There is no better time. Independent Living has to be the unifying force that pulls us together for another exercise of our collective power; to break the back of poverty and finally realize true freedom.

This is what Independent Living is.

The Summer Of Our Discontent

Working in an Independent Living Center for as long as I did and then working for state government in an executive position for eight years was a privilege but doing pure advocacy in the community with the Disability Policy Consortium for the last five years has been especially rewarding.

I think it's because advocacy is deeply embedded in my soul. Since the age of 14, I've had to fight relentlessly just to live the way everyone else takes for granted that doesn’t have a disability. I just want to be on a level playing field with the same opportunities the people around me have. That’s all, nothing more. 

I’ve worked hard, fought a lot of battles; won some, lost more. I've managed to live in the community with PAS for 45 years, got married to the love of my life, have a family, and made a lot of friends along the way. I’ve been blessed by any standard. Unfortunately, this reminds me of what I used to hear a lot when I was coming up through the IL movement usually from parents or providers, “we all can’t be Charlie Carr.”

I didn’t and never will apologize for who I am. Everyone has the potential to live independently in the community outside of nursing homes and other congregate settings when the proper supports are in place. All I want to do is survive and never give back the gains that we’ve made with our brothers and sisters from around the country and, in fact, the world. 

This brings me back to my passion for advocacy. Now, I can take all of the life lessons I've learned and the knowledge, resources, and connections that come with them, to bear down legislatively and bureaucratically to make a change. I haven't been this happy in a long time. 

Interestingly, I’ve come to learn and appreciate that we should be lifelong learners, always listening and adjusting the way we think and act. The DPC is the place where this is happening for me. I’ve met and continue to work with so-called millennials who have intersections with disability, gender identity, social justice, racial equality, poverty, LGBTQ orientation, and on and on. In a word, it’s empowering!

As a white disabled male of privilege, I’m learning about structural racism and disability elitism. I now believe in anti-racism and will speak out and act in the face of discrimination and racism. I fully realize and understand how the disability community has managed to marginalize subpopulations in our own movement. I now fight to stop it. We can change and must each commit to it. Those that rest in comfort after the many battles we've been in are squandering their time and talent. Now more than ever we’re under unprecedented attack. We need you again!

 Let this summer be the “Summer of Our Discontent” that Dr. King referenced in his 1964 call for social justice and racial equality through activism and non-violent opposition. We have to fight to ensure that the ADA remains the cornerstone of our civil rights and isn’t eroded bit by bit. We have to fight for the complete preservation of the ACA. The Trump administration has a lawsuit currently before the Supreme Court that renders this vital healthcare legislation and delivery systems developed as unconstitutional. If this happens, millions of poor and middle-class people will lose their healthcare.

Millions of immigrants are being denied basic appeal rights when US officials determine that they’re not “eligible” for asylum even though they’re fleeing persecution and harm from oftentimes corrupt dictators.

In the time of the global COVID-19 pandemic, hospitals are rationing healthcare to people with significant disabilities. Quality of life measures determine whether a person with a disability should be given access to more involved and expensive healthcare such as using ventilators. States use Crisis Standards of Care that assign numeric values to levels of care needed to survive; the more you have, the lower your score. As you can imagine, people with disabilities are very low on the priority list and, subsequently, don’t get treatment and are left to die.

Another tremendous advantage of intersectionality is strength in numbers. There’s a presidential election in November and many down-ballot elections from senators and representative’s to governors and mayors. We need to pull together and be active politically now as if our lives depend on it, as Justin Dart would say.

That means every one of us should be registered to vote and educated enough to know which candidates support our values, and, most importantly, VOTE for them! 

Let this be Summer of Our Discontent.

#REVUP #CriptheVote .

 

 

 

 

 

 

 

 

 

 

 

 

 

 

A Brief Review Of The Origin And Potential Tragedy Of Electronic Visit Verification (EVV)

In the waning days of the 2016 legislative year, Congress passed the 21st Century Cures Act that represented a significant investment in improving access and availability of mental health services nationally. Included in this legislation was a last minute addition titled Electronic Visit Verification (EVV) in Section 12006.

It’s largely believed that this addition that required a “pay for” was driven by the EVV vendor lobby; principally Sandata corporation. Section 12006 requires states that have personal care services programs to additionally report the type of service performed; individual receiving the service; date of the service; location of service delivery; individual providing the services and time the service begins and ends. This requirement is, at the very least, a burden on every Medicaid agency in the country.

Why would this invasive reporting requirement completely unrelated to mental health services be included in the law? Ultimately it was because a few large healthcare corporations knew they could make a lot of money by requiring state Medicaid agencies to report this new information and companies like Sandata and Optum had the software and training available to implement it albeit for a hefty price.Y

In order to justify this burdensome reporting requirement company lobbyists alleged fraud, waste and abuse in the personal care services program was extensive and could be stopped by using their software. The Industry along with congressional staffers even went so far as to come up with a figure of approximately $125 million that could be “saved” over a ten-years by requiring EVV. This amount based on absolutely nothing became a pay for essentially guaranteeing that it will save that much in 10 years. To sweeten the deal, the legislation appropriated Medicaid funding to the states to purchase software and for ongoing maintenance.

During a congressional oversight committee hearing the Congressional Budget Office (CBO) was asked about the $125 million pay for and how it was determined. CBO had no credible evidence to support the allegation that there was a high-level of fraud, waste and abuse in the personal care services program. Based on that, the panel declared the projected “savings” as flawed and unacceptable. Since that time no substantive/credible findings of fraud in the consumer directed personal care services program has been made available by CBO yet states continue to interpret location as using GPS and biometrics in the name of program integrity. Program integrity is code for fraud, waste and abuse.

The myth was exposed. Undaunted, the EVV industry went to work on state Medicaid agencies, who in many cases were willing partners, selling their software and programs that use GPS or biometrics in order to report the time and location of workers providing services. The software is not new to the home care industry and is used often by home care agencies to monitor their employees. It is, however, new to and absolutely contrary to the personal care services program for consumers who direct and employ personal care services workers.

It's one thing if an agency like Home Health Care wants to track their employees but forcing this model on the consumer directed personal care services program is antithetical to consumer control and choice. The EVV Industry and state Medicaid agencies are getting strong pushback from the disability and elder communities as a result. EVV legislation does not require the use of GPS and biometrics in the location provision. Thus, for example, California uses a web portal for EVV that does not require GPS or biometrics and simply addresses the location provision by requiring that the worker and consumer indicate whether the service was delivered in the home, community or both. This method is acceptable to the disability and elder communities because it preserves worker and consumer privacy rights. Equally as important is that workers much prefer this approach and are more likely to continue working in the field.

Because of this resistance to current EVV software that uses GPS and biometrics to surveil workers and consumers, approximately 38 states have filed for extensions with the Center for Medicare and Medicaid services (CMS) to give them more time to implement EVV. The current law requires that states improve stakeholder outreach to determine the most appropriate model to implement EVV as well. These states have until January 1, 2021 to have “the least burdensome” program in place or they will risk the loss of Medicaid funding.

A perfect storm is brewing. An additional consequence of the law is that it adds yet another layer of bureaucracy to programs and recipients and includes privacy rights infringement for workers to each state’s already overburdened Medicaid agencies. Both of these elements are time consuming, invasive and pushing away qualified workers and further exacerbates the existing crisis in recruiting and keeping good personal care services workers nationally. Most states that administer the consumer directed personal care services program either through HCBS, MCO or some other method are already experiencing a serious worker shortage that negatively impacts disabled clients and elders who rely on these workers to live in the community outside of institutions like nursing homes. In several states, disabled and elder personal care services consumers have defaulted to emergency rooms and short term nursing home stays because they can’t find adequate and appropriate workers. 

It's time for Congress to provide clarification of the EVV program requirements; particularly location. Cures 2.0 is being discussed in the Energy & Commerce Committee that would make technical fixes to the law and is the perfect vehicle to address the chaos and confusion that's playing out nationally with EVV. Representatives Diana DeGette and Fred Upton have taken the lead. They’ve collected written suggestions for improvement from over 200 people/ organizations nationally and are analyzing responses. Unfortunately, the disability community was not included in the distribution of invitations to comment but NCIL did find out three days before the closing date and submitted a decent amount of testimony.

Further, we’ve heard that there is not much interest in including clarification of EVV in the legislation. This is unacceptable and we must contact our member(s) of the Energy & Commerce Committee and ask that they work with representatives DeGette and Upton to clarify the location provision of EVV by including language that prohibits the use of GPS and biometrics. Failure to act quickly lessons our chances of getting these changes made to the bill.

We can’t afford to miss this opportunity because the price we’ll pay in the future is that the many decades of building a consumer controlled personal care services program in almost every state will slowly regress into an agency run model.

Please join us so together we can stop this tragedy from happening.

EVV = House Arrest

The Massachusetts Executive Office of Health and Human Services will be kicking off another one of their statewide "stakeholder meetings" this time on Electronic Visit Verification (EVV). EVV is even more egregious than the recent PCA Overtime battle.

EVV assumes that the PCA and the member employer will have to relinquish privacy rights during the time that the PCA works. EOHHS is planning to implement EVV sometime in the fall. We must use these statewide meetings to send a message; you have no right to geo-track me while I'm performing my everyday activities of daily living.

This is precisely what they plan to do and if we don't oppose it early on, we’ll have to live with an invasive system that violates our right to privacy.

It's perfectly reasonable and expected to track the hours worked by a PCA for a consumer which is currently the practice. It's old and paper driven system should be updated to capture the information needed with an EVV system that tracks time in and time out and not Geo tracking locations.

The PCA member employer certifies that the hours their PCAs work are accurate and true. This has been the practice pretty much since the program began in 1974. It's been successful and has grown the program to its present level but EVV is more about fraud, waste, and abuse.

The larger problem and, most likely, legal, challenge lies in the right to privacy and how the proposed system assumes that member employers and PCAs are committing fraud and must be geo-tracked to prove it.

We can't be placed under house arrest for committing no crime.

Onward!

Independent Living philosophy and service delivery; a continuing challenge for Independent Living Centers

Many years ago as I was starting the Northeast Independent Living Program, a friend of mine  who is still very active active in the Disability Rights movement warned me against including Personal Care Assistance as a service because of the inherent medical model requirements. I struggled with his advice and did it anyway because I felt like the need was so great. Because of his warning, however, I purposely controlled its growth so that it didn't dwarf other programs for people who don't need PAS but still have disabilities. It wasn't easy but it worked and other programs grew that served people with psychiatric disabilities, Deaf and hard of hearing, cognitive, etc. In Massachusetts, if an ILC chooses to provide Personal Care Assistance they must employ/contract with a Registered Nurse and an Occupational Therapist to do evaluations of need and subsequent re-evaluations. It flies in the face of the non-medical model of an ILC, right? Well, yes and no. If done properly, administering this medical program serves a huge need and won't unduly influence the philosophy and practice of the Center. Some haven't fared as well and people with physical disabilities are, by and large, their primary disability group because the income from administering the program has dictated their staffing and outreach priorities. The basic philosophical tenet of cross disability has, essentially, fallen by the wayside.

Now the stakes are even higher; with the Money Follows the Person and the Duals Demonstration federal waivers, Medicaid, and the medical model that it represents, have reared their heads again as ILC's try to do the right thing to get people with disabilities out of nursing homes and assist in getting good quality healthcare from participating healthcare plans for their consumers who are receiving both Medicaid and Medicare. The demands on participating ILC's by state Medicaid agencies  to play more of a "clinical role" and jump through endless hoops and never-ending paperwork that, frankly, hinders their ability to get the job done has begun to significantly challenge the IL philosophy more than ever.

We are at a crossroads as a movement and together we must get in front of this problem before we lose our souls to the medical model. It's hard because there's nothing diabolical about trying to get people with disabilities good services to live independently in the community outside of nursing homes and other institutions. But at what cost?