Structural ableism in the Massachusetts PCA union

Over the past year, MassHealth, the PCA Workforce Council and the PCA union (SEIU 1199) have been engaged in discussions that will soon lead to collective bargaining with the Commonwealth. These entities, so far, have not included input from the broader PCA consumer employer Community or PCAs.

Not surprisingly, there is agreement on one basic issue and that is that PCAs desperately need a significant increase in pay and benefits especially given the workforce crisis that has been lingering on since the COVID pandemic. In fact, many members from the disability community gathered in solidarity with PCAs and SEIU for better wages and benefits on September 1 followed up by a demand delivered to the governor.

However, there is a sharp difference of opinion between consumer employers and SEIU on how to get there. Digging deeper, there is ongoing discussion about having two tiered rates for PCAs based on the level of disability and complexity of ADLs of consumer employers. Thus, people with disabilities that have more significant needs such as light suctioning, tube feeding, bowel care etc., would be eligible to receive a higher rate of pay for their PCAs. Again, there is agreement, but the caveat is that the union wants to tie that higher rate increase to mandatory training for PCAs in order to qualify for the additional funding.

This approach undermines the basic premise of consumer control and shifts it to the demands of the union. What does this mean in a practical sense? If adopted, consumer employers would not be able to hire PCAs for the higher rate of pay if, determined eligible, unless they were “certified” as having had mandatory training. Consumer control dictates that the consumer employer hires, trains and, if necessary, fires PCAs. The proposal being discussed further medicalizes the already overly bureaucratic and medical PCA program that we have today.

This structural ableism is pervasive not only from the union but from the broader healthcare industrial complex. Significantly disabled consumer employers’ demand for control, choice and dignity of risk are pushed off to the side, and otherwise marginalized by both groups. Our lives and needs to survive in the community and live independently outside of nursing homes and other facilities are secondary to that of the vocal minority of PCAs that are union activists with a shared agenda, not our agenda, however.

Even more divisive is that this unfortunately pits two marginalized groups living in poverty against each other. Consumer employers must be poor to qualify for MassHealth and receive PCA services and the PCA workforce, is comprised of a majority of black and brown women also living in poverty from paycheck to paycheck. It's unconscionable and people's lives lie in the balance while this chess game for power and money plays out.

There is a way forward that is clear and simple. Embrace training for PCAs but don't make training mandatory for them to qualify for increased pay. The current advanced payment policy direction defies logic given the current workforce crisis and can only serve to restrict the availability of PCAs to consumer employers that have significant disabilities and are already confronted with no PCAs on a regular basis and result in a significantly lower quality of life and poor health.

We have an opportunity to beat back this power grab by attending upcoming listening sessions conducted by MassHealth on this issue. Stand up and say no to structural ableism and yes to optional training for PCAs!

Electronic Visit Verification - A Cash Cow - Follow the Money

By Charlie Carr – September 12, 2022

Beginning in 2016, Sandata Technologies engaged a lobbying firm Arnold & Porter that donated $30,000 to congressional members who served on relevant committees in the Health Services Industry sector.

It's not a coincidence that Electronic Visit Verification (EVV) was included in HR 2446, the 21st-Century Cures act of the same year. Sandata is the largest provider of EVV software and training to the nation’s Medicaid agencies that are required by law to require EVV to beneficiaries of Home Health and Personal Care Services.

By influencing members of the Energy & Commerce Committee in the House, EVV was written into the law so that Sandata, MITC, and many others would line their pockets with a continuous flow of income based on sales of their products to taxpayer-funded Medicaid agencies. Representative Brett Guthrie (R) KY was the bill sponsor and sat on Energy & Commerce. The bill purported to “pay for” itself by saving $290 million over 10 years. This was later thrown out in an oversight committee hearing for having no basis in fact.

By influencing members of the Energy & Commerce Committee in the House, EVV was written into the law so that Sandata, MITC, and many others would line their pockets with a continuous flow of income based on sales of their products to taxpayer-funded Medicaid agencies.

Today, close to six years later after a stalled implementation effort by the previous administration to prematurely push out EVV into the states with scant guidance and very little enforcement of congressional requirement that there must be substantial stakeholder input into the design and implementation process, states are moving ahead to avoid federal FMAP penalties also written into the law.

Congress required that CMS provide an extension of one year for implementation because of the lack of input by stakeholders. Additionally, states could file for ”good faith exemptions” after that to even begin to address the enormity of incorporating EVV into home health and personal care services programs that have been in operation for decades. Immediately, disabled consumer employers were deeply concerned about surveillance using GPS on their employees. Naturally, the employees were also hesitant to be surveilled with their private information being provided to Medicaid agencies and their subcontractors that could be leaked, stolen, or shared.

No other Medicaid programs require tracking beneficiaries and violating their right to privacy.

Independent studies including a Data & Society research paper detail the ramifications of EVV and privacy and what the effect is on beneficiaries and the workforce. Potential PCS employees choose not to become providers not only because of low wages and no benefits but now they must agree to be surveilled.

Many legislators and policymakers allege that there's fraud, waste and abuse in PCS, however, in 2022 Applied Self Direction, a non-partisan technical assistance organization analyzed inspector General Office (IGO) data reported by National Medicaid Fraud Control Units (MFCU) and found that the actual numbers in the self-directed PCS programs are at an annual rate of .0002% of fraud convictions that totals $6,065,610.The federal annual Medicaid expenditures for self directed programs is approximately $100 billion.

In Texas alone, implementation of EVV is at $90 million and growing. When factoring in the rest of the country, EVV quickly becomes a $200 million industry with the federal government matching minimally 50% of the cost. Expenses are projected to grow, and maintenance of systems is covered by HHS. With all this happening in a five-year period it's easy to see why the “pay for” of $290 million over 10 years couldn't have missed the mark any further. At this point, EVV will never pay for itself but continue to be a black hole of taxpayer funded Medicaid dollars that don't save any money and, in fact, spend hundreds of millions of dollars annually on software and personnel expenses that states must bear the cost not just in terms of dollars but erosion of control and quality of life for its beneficiaries.

Since its inception, Medicaid has consistently been a target of conservatives that have termed it a ”cesspool of waste” further stigmatizing poor people as lazy malcontents that are looking for a free ride. In fact, 60% of non-disabled Medicaid beneficiary’s work. Large corporations like Walmart, McDonald’s and Amazon suppress health insurance benefits to low-paid workers and force them to enroll in Medicaid and food assistance to keep themselves and their families healthy and fed. This is the hypocrisy of the wealthy elite. They maximize corporate earnings by not paying a living wage and providing decent health insurance.

Unfortunately, the same forces are at work with EVV. HR 6000, commonly known as Cures 2.0 is in the House Energy & Commerce committee gathering support for a vote to pass it and get it to the Senate. This time, however, it contains language that prohibits the use of GPS in EVV. Disability rights advocates fought for this to stop the blatant privacy rights violations in the original bill and recognizes the severity of its impact on the worker crisis that every state in the country is experiencing in home health and personal care services programs. People with disabilities and elders can't get the assistance they need and are being forced into nursing homes.

The home care Industry objected because surveilling their employees is their business model. After months of negotiations, compromise language was introduced by the disability community that excluded home care from the prohibition of the use of GPS and has limited it to just personal care services programs where the person with a disability is the employer. Why isn't it moving? Is Republican leadership on board? No, some still insist on their tired go-to narrative that surveillance is necessary because fraud, waste, and abuse must be true even though it's proven to be false.

HR 6000 is important legislation that addresses pandemic preparedness, public health issues, drug development, and more. Its passage will be an important step in ensuring quality health outcomes for Americans but people with disabilities are being kicked to the curb by E&C Republican leadership. After all, they made a deal with EVV manufacturers who paid for the privilege.

The National EVV Consumer Employer Coalition calls upon Congress to do the right thing and accept the compromise language, vote to pass HR 6000 with this change out of Energy & Commerce and bring it to the floor for a vote. We urge every member of the committee to move beyond ideology and throw a lifeline to their constituents with disabilities who are drowning. Our lives are worth more in any measure than the bottom line of EVV companies.

Charlie  Carr - Is a nationally recognized leader in the independent living movement and cochair of the National EVV Consumer Employer Coalition. He is a co-founder of the National Council of Independent Living, founder and CEO of the Northeast Independent Living Program and was commissioner of the Massachusetts Rehabilitation Commission. He is now the Legislative Liaison for the Disability Policy Consortium.

The Real Story Behind Electronic Visit Verification The myth of fraud and the waste of billions of taxpayer dollars to support it

One of the primary motivations behind including EVV in the 21st-Century Cures act was based on the myth that there's rampant fraud in the personal care services program nationally. The Congressional Budget Office (CBO) in 2016 projected that $ 290 million would be saved over 10 years if EVV was included in the bill and this projected savings was a “pay for”. It is widely reported that the EVV industry was lobbying for its inclusion with the position that EVV is the best way to stop fraud, waste, and abuse in personal care services (PCS). It's more than a coincidence that it would also launch a requirement to purchase and maintain their software in practically every state.

Despite national disability and privacy organizations vigorously protesting EVV, the bill passed and included it. However, the law simply requires that location is one of the data elements that needs to be gathered and reported by states. It doesn’t specify or mention the use of Global Positioning Systems (GPS) or biometrics like facial or voice recognition.

It was CMS that required its use through guidance. The EVV industry was already selling their monitoring systems of personal care services workers to state Medicaid agencies with the promise that they would meet CMS guidance and, if used, would be complying and not trigger Federal Medicaid Assistance Percentage (FMAP) penalties imposed by the legislation for noncompliant states.

Disability rights advocates, unions, state Medicaid agencies, disability trade organizations, personal care services workers and many more affected people were stunned. In the case of California’s IHSS program, the largest self directed (the disabled person is the employer, not an agency) program in the country with 400,000 disabled personal care services consumer employers who were successfully using a web-based portal reporting system prior to Cures, it meant that the state had to discontinue this very effective tool to comply and to not be penalized with cuts in FMAP.

Once issued, this CMS guidance forced people with disabilities and their personal care services workers to give up their right to privacy. The EVV industry sells states canned programs that use GPS and biometrics that track the physical location of the workers and by default the people with disabilities who employ them. EVV is the only federal program that tracks recipients of service; the other being the Bureau of Prisons home confinement program.

“EVV is the only federal program that tracks recipients of service; the other being the Bureau of Prisons home confinement program”

An unintended consequence has been a severe exacerbation of the personal care services workforce shortage. EVV systems are subject to state modifications and developed to easily incorporate them and has resulted in onerous and unnecessary practices in several states that make it extremely difficult to navigate and use location requirements daily. Some states use “geofencing” that sets boundaries that disabled consumer employers are restricted to outside of the home and if their personal care services worker’s GPS marker is detected beyond the preset boundaries, it triggers an “exception” that then leads to a review process by the state/ vendor that often holds up payment to the worker. It's easy to understand why workers are reluctant to join this workforce and generally be paid less than fast food chains and get benefits that are not offered by PCS and not be subject to surveillance.

As EVV continues to go live in the states, an alarming number of problems reported by self-directed PCS consumer employers are arising that undermine control of their employees and make it practically impossible to recruit qualified workers to meet their needs. Thousands of people with disabilities across the country are being forced to manage their personal care with significantly less assistance than they actually need due to the imposed restrictions and worker shortages caused by EVV. Many are forced back into nursing homes which is a civil rights violation under the ADA Olmstead decision.

This poor public policy is because of the alleged fraud, waste and abuse projected in the original EVV section of the 21st-Century Cures Act. In 2022 Applied Self Direction, a non-partisan technical assistance organization analyzed General Accounting Office (GAO) data reported by National Medicaid Fraud Control Units (MFCU) and found that the actual numbers in the self-directed PCS programs are at an annual rate of .0002% of fraud convictions that totals $6,065,610.The federal annual Medicaid expenditures for self directed programs is approximately $100 billion. The incidence of fraud, waste and abuse in self-directed PCS is negligible and is far exceeded by the amount of Medicaid HCBS money spent on EVV systems purchases and maintenance. For example, in Texas, from FY 2017 to FY 2021 the state spent just over $1.3 billion to implement EVV. This information was obtained through a FOIA request, and the shocking amount of money spent to date is a bellwether of what has been spent in the 35 other states that have implemented EVV. Suffice it to say, the EVV industry that provides the software, training and maintenance paid for by Medicaid is thriving and policymakers must address the very clear data that shows the expense of EVV far outweighs any benefits derived.

“The incidence of fraud, waste and abuse in self-directed PCS is negligible  and is far exceeded by the amount of Medicaid HCBS money spent on  EVV systems purchases and maintenance”

PCS employers and workers and their allies realized that the only way they could beat back the dangerous effects of the 21st-Century Cures act was to push for legislative change in Cures 2.0 filed by representatives DeGette and Upton in 2021. As a result, section 409 prohibits the use of GPS and biometrics in PCS. It's important to understand that PCS includes home care agencies as well as self-directed programs. Home care agencies have been using GPS and biometrics as part of their business model for many years prior to the original 2016 legislation. Agencies that employ PCS workers want to continue monitoring their employees, but the vast majority of self-directed PCS consumer employers do not.

The power and influence of the home care industry could kill the EVV protections that self-directed consumer employers have fought hard for over the past five years. Anticipating this, four national organizations led by the National EVV Consumer Employer Coalition and ADvancing States met several times to reach consensus on compromise legislative language in Cures 2.0 that separated self-directed PCS from home care agencies. The language gives states the flexibility they need to properly implement EVV but prohibits the use of GPS and biometrics in self-directed PCS programs. Thus, home care would not be subject to this provision and can continue using employee surveillance.

The hope is that both groups can work together to forge a good faith relationship that will embrace the compromise legislation and encourage the congressional Energy & Commerce Committee to adopt it. It's a sensible solution that allows for the protection of privacy and consumer employer choice and hopefully blunts the effects of worker shortages for self directed programs and, concurrently, provides for the continued use of GPS and biometrics in the home care industry.

The most important outcome that outweighs any differences is that both groups can continue to work together to keep people with disabilities and elders out of nursing homes and living with dignity in the community. The success of not only this bill but future legislation and policies and programs hinges on how well the disability and elder communities and the programs that serve them can find common ground to keep and maintain independent living and aging in place values on the forefront.

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.

Fear

I’ve come to realize that disabled people don't talk much about the fear we have in our lives every day. It’s difficult enough juggling government programs to cobble together a support system to live independently in the community but imagine adding the constant fear of losing one or two of them. I’m not going to hide it, I’m always afraid!

This fear motivates me to fight to hold on to what we've got and push hard for expansion and more security. I have no use for politicians that are constantly whining about the growing expense of the Medicaid program or the relentless allegations of fraud, waste, and abuse. If you want to go down that road let's talk about the defense budget. You know that bloated pork-barrel political morass that barely gets questioned and is full of fraud waste and abuse.

We’re constantly being scrutinized and often seen as needing expensive long term services and supports/healthcare that need to be ”managed.” Thus, managed care. If not done correctly, which is most of the time, managed care results in cutting back on healthcare, long term services and supports and not being remotely responsive to our needs. It seems like they've never met an algorithm they didn't like that consistently finds ”savings” and squeezes every last penny out of our hides in the name of cost-efficiency. And to make it more interesting, they claim that managed care produces better healthcare outcomes.

Trust me, it's generally a false narrative. If my health plan is pulling away access to important healthcare and whittling down my long term services and supports, at some point my health suffers; quality of life is another story altogether. Again, we’re fearful that in the name of saving money to enrich the bottom line of healthcare corporations there comes a moment in our lives when the dominoes start to fall. Our support systems fail and the people we need to assist us in living independently are either no longer covered or presented with systemic barriers including salaries that are definitely not a living wage or privacy rights violations vis-à-vis electronic visit verification and they‘re forced to make the very difficult decision of getting out of the field.

I see it happening frequently in my life. At least twice a week I lie in bed and hope that my PCA will come to work and get me up. It’s not unusual for me to lose a good PCA because they can't pay their bills with the current rate of reimbursement. My PCAs are typically Latinas with children and are the single head of household. I don't have enough need to offer them a full-time position so after a while, through sheer desperation, they get another job. Good for them and bad for me. When you don’t know how you're going to get out of bed in the morning you can't help but worry all the time. This is a life-altering situation and just isn’t important enough to the politicians and bureaucrats who have the power to provide better wages and build flexibility into systems that support our independence as well as quality of life.

 My biggest fear is going back into an institution where I have absolutely zero control of my life. Please join me in being insightful and honest enough to say that you’re fearful and join in the fight to stop the incremental destabilization of our Independence and the systems and people that keep us out of institutions.

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.

The Changing Face of MRC

The Massachusetts Rehabilitation Commission has been the mainstay for employment of people with disabilities for the past 80+ years and community living for people with disabilities for the past 40 years. Combining the two functions in one agency makes sense because you can't work if you're not in a stable living setting. 

Since 1980, MRC funded Centers for Independent Living (CIL's) have developed a network of community living services that support over 30,000 people with all disabilities to live independently in the community statewide outside of nursing homes and other institutions. Services include advocacy, peer support and counseling, benefits counseling, skills training, housing assistance, employment preparation and coordinated long-term services and supports.

MRC has done a good job providing programs and services that meet its Community Living mission, but it appears to be in turmoil with the Vocational Rehabilitation (VR), or employment, side of the agency. Last year MRC had significant audit findings with the federal Rehabilitation Services Administration (RSA) coupled with a loss of federal funding and poor internal controls that resulted in overspending $22 million in the VR program.

In an effort to stop the bleeding, MRC put spending limits in place and initiated a new “Priority of Service” system that is resulting in fewer people with disabilities being determined eligible for paid VR employment services like training in the trades, on-the-job training, books, transportation, and other pathways to competitive integrated employment. Today MRC will only allow $1000 per year per client per year to be spent in these areas and new clients are required to prove that they have the “most significant disability” in order to receive paid services. Additionally, MRC has increased the number of activities of daily living that present barriers to employment from 3 to 4 in order for applicants to meet the highest priority of eligibility; in essence, they’re screening out more people. The process VR counselors are forced to use to determine eligibility is cumbersome, confusing, subjective and makes it even harder to get services that lead to a job.

Counselors routinely require clients to get a healthcare professional to document that activities of daily living are "present" which ignores the clinical training that counselors who are required to have Master’s degrees in VR counseling already possess and adds weeks or months to the eligibility process. As a result, the number of clients moving into paid services with an Individualized Plan for Employment (IPE) has dropped off dramatically.

With these draconian measures one would think MRC is starving for cash, but not so. In an unprecedented move for MRC, in FY 19 the agency received $10.1 million in a supplemental appropriation and in the Governor’s FY 20 budget EOHHS allotted $8.5 million "for lost revenue and to address federal audit findings." In addition, it received $4.5 million in Department of Mental Health (DMH) funding to serve DMH clients with supported employment services while it seeks to abolish its existing Supported Employment Services (SES) division that provides services to people with any type of disability that need job supports. The new DMH funding will provide enough funding to hire at least 15 new VR counselors to exclusively serve their clients. What happened to the hiring freeze imposed by the Baker administration?

And, incredibly, MRC just gave Mass Hire (new name for Career Centers) $450,000 to "train their clients." Career Centers have received hundreds of thousands of dollars over the decades through the federal Disability Employment Initiative grant program and other Department of Labor funding to serve clients with disabilities more appropriately, or at all. Not much has changed in 20 years and people with significant disabilities have not reported positive experiences. In fact, just the opposite. Why would MRC be shelling out close to half a million dollars to be spent by July 1 to a system with a poor track record and an already existing federal requirement to serve people with disabilities? Why is this money going out the door while clients already in paid services have a $1000 per year cap? Where is the logic?

With unemployment of disabled people at a solid 30% in one of the most robust economy’s in the past 30 years we should be demanding more from MRC and for it to get its internal affairs in order and increase employment training, placement and support for the ever-growing number of people with all disabilities living in the community who want to work toward economic self-sufficiency.

Rather than engage the disability community in a dialogue about how to correct their problems that we ultimately bear the consequences of, they hired Deloitte at an exorbitant expense to assist in redesigning their operation. The plan has been complete for months and now MRC is looking to hire another consultant to implement it. Have we been invited to the table for our opinions and recommendations? No, we haven't!

The time to act is now. We need to hold MRC accountable for its actions and demand transparency of its "Redesign" with active outreach, involvement and advice from the disability community now rather than react later. How can we expect to break the cycle of poverty and get a job if the very agency tasked with this is becoming a barrier?

Charlie Carr was the Commissioner of MRC from 2007-2015

All I want is a job

Disabled people are the most oppressed and marginalized group of people in the world. Here in the US, the stigma of disability is pervasive; the media either portrays us as helpless cripples or superheroes for doing everyday things. We're also the poorest with the highest rate of unemployment. Well over 90% of us are on federal public benefits receiving just under $9000 a year on SSI with an unemployment rate of 30%.

Most of us live in public subsidized housing, rely on Medicaid or Medicare as our primary source of healthcare and Long Term Services and Supports (LTSS) and struggle with food insecurity. State legislatures and the Congress generally view us as "takers" with little or no value to society. This is evident by heartless cuts in Medicaid, housing, and the constant threat to cut Social Security benefits.

For the most part, unless you're wealthy, if you want to break the cycle of poverty and get a job it's generally a nonstarter. Because the laws are so archaic and geared toward providing helpless people with a subsistence existence and "taking care of us," we're trapped in a system that penalizes us for working. If you go to work you have to give up Medicaid which is the primary source of LTSS like Personal Assistance Services, drug benefits and Durable Medical Equipment (DME). Even if a company offers health insurance, it doesn't cover LTSS and appropriate DME. 

Then there was the fight for the Ticket to Work Incentive Act (TWIIA) in 1999 that would address the barriers associated with working and continuing to receive Medicaid. On some level it did and the Medicaid Buy-in (MBI) was created so that disabled people can essentially buy Medicaid by paying a premium and work at the same time. Radical in its day, the devil was in the details and how states decided to implement it. Today, most states have anemic MBI programs that don't allow for a decent salary and or realistic assets. So, disabled people who do venture into work generally earn less than $40,000 per year and can only have limited assets; slightly better but certainly not what we wanted. To rub salt in the wound, we later realized that if we had to stop working for any reason, we have to "spend down" our savings and return to poverty in order to continue receiving Medicaid. And, the last nail in the coffin, the deceptive Estate Recovery provision; whatever earnings you've accumulated and saved throughout your working years are "clawed back" by state Medicaid agencies when you die. Your estate is on the hook for whatever was paid by Medicaid from age 55 on.

 No wonder people with disabilities are unemployed. Who wants to work hard for a living and have the government take your nest egg and retirement money away if you can’t continue working and from your estate when you die?

Although this seems like an impossible situation to actually do something about, it's imperative that we come together and push elected officials to have government take its foot off our necks and let us work and have affordable healthcare and LTSS. We can't tolerate another minute of being forced into poverty due to federal legislation that doesn't reflect reality and inextricably links disability with work. The disability community desperately needs to agree on a strategy to separate work from disability legislatively. By unlinking the two, legislators and advocates can agree on legislation that promotes employment for people with disabilities and doesn't tie income and assets to eligibility for Medicaid for disabled people that work.

Just like other oppressed groups, if we lift ourselves out of poverty, we'll have endless opportunity to live a good quality life.

Onward!

Is It November Yet?

I think we’re all feeling under siege from so many different directions that it's hard to know what to do next. Our anxiety levels are constantly rising, fear has become commonplace and many frequently feel helpless.

Does this resonate with you?

If it does, or even if it feels like it could, then we need to figure out what to do to stop it right away. I say we because if we are serious about stopping the cycle of reactionary fear, anxiety, and helplessness it's going to take all of us to name it, describe it and defeat it.

What's interesting to me is that the current political environment has given a platform and a spotlight to the unseemly underside of American life. Racism, xenophobia, homophobia, and ableism, to name a few, have been festering under the surface of society since humanity has been recorded.

Not since the McCarthy era have we been so paranoid and suspicious of government. I can think of a few good reasons why we're in this place today and, interestingly, they correlate with the "Red Scare" of the 50s. We were manipulated by Congress to believe that communism was taking over our country and it would somehow destroy us; "better off dead than red" was what the far right believed to its core.

Now, the preferred bait is Muslims and Mexicans. Instead of communists, we're being attacked by Muslims and Mexicans; Muslims are killing people in the streets and Mexicans are stealing all the jobs. This is the right-wing narrative as we speak. Just watch Fox News!

They’re not alone, that's for sure because disabled people are also in the crosshairs. We’re not as egregious as a Muslim but we’re more of a bother. Remember Donald Trump's mocking a disabled journalist. He summed up how the White House and the Republican members of Congress feel about people with disabilities. It's disgusting

We've been fighting back and joining with other groups to collectively declare war on the wholesale slaughter of poverty programs that support millions of families, children, and people with disabilities to be able to live with independence and dignity in the community. When the ACA was under attack by the Republicans and the White House, many proposed changes in Medicaid would have destroyed waiver programs that we rely on for Long Term Services and Supports in the community. But intersectionality got disability issues included in the narrative and actions of several national organizations that fight for issues like reproductive rights, race discrimination, and healthcare.

ADAPT, once again, gave a face and an understanding of disabled people in the media and in the Congress. Their actions were perfectly timed and powerful enough to sway public opinion to think more favorably about supporting disabled people's need for adequate and appropriate Medicaid funded services. While people in wheelchairs are being dragged out of House and Senate offices and broadcast on national TV, the general public got a wake-up call. Wow, even cripples our getting screwed over!

We did eventually win that fight and it was sweet! But it's relentless -- the Republicans voted to strip away key provisions of the ADA, the secretary of education has significantly weakened "special-education" for children with disabilities, the secretary of HUD is proposing a 5% increase in rent for low-income housing and now Congress is requiring that people with disabilities who use personal assistants for daily living must have their location tracked by satellite to monitor the hours they work.

It's endless and this White House has, minimally, two and a half years left. Can we agree on one thing? Disabled people are angry about the constant attacks on our lives and we'll fight back at the ballot box to bring in new and more competent people to represent us.

I think most Americans want to see change in the White House and in Congress. They've let us down and don't deserve to be reelected. I hope you work hard this summer organizing in the disability community to get out and vote on November 6. Don't forget to align with other community organizations that fight for social justice and support their issues as well.

Nothing About Us Without Us!

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!

We must resist to stay alive

Sometimes I get overwhelmed by the number of attacks being made on poor people in this country. I asked myself, what can I do to make a difference? I can't be fighting every battle in front of me like education, healthcare, reproductive health, civil rights; I'm only one person!

After a lot of thought and advice, I narrowed it down to two. I chose voting and healthcare.

Voting, because the disability community has an opportunity to come together as a bloc and use our strength to gain electoral power. Power that elects candidates for public office. If we get to candidates or incumbents with a pro-disability rights agenda, they'll embrace it if they think that the disability voting bloc will either help to elect them or keep them in office.

Healthcare, because without good healthcare and long-term services and supports, disabled people wouldn’t be able to live a healthy and independent life. Long-term services and supports have been the primary pathway out of institutional settings for disabled people for decades. For me, without attendant services, I'd still be institutionalized.

I've been working on both of these quite a bit lately and there's both good and bad news.

The good news is that, as a community, we're emerging as a political force as was evidenced in the presidential campaign. The backlash from Trump mocking a disabled reporter was fierce and it had an impact. The public overwhelmingly admonished him and media coverage consistently recognized his behavior as unacceptable. Clinton, on the other hand, had strong involvement of disabled people in the earliest stages of her campaign and positions that supported our values and needs. Her campaign had the most active involvement of people with disabilities on all levels than any other in history.

Voter turnout in the disability community was strong and made a difference in the outcome. Hillary Clinton, who had a strong disability policy agenda, was the community's choice but, unfortunately, she wasn't elected even though she won the popular vote. What remains is a grassroots movement of people with disabilities around the country who tirelessly work on getting out the vote and use the ballot box for power.

The bad news is that Trump and the Republican Congress want to gut health care and long-term services and supports by repealing Obamacare and replacing it with legislation that will ration healthcare and cut back on Medicaid funding for long-term services and supports. They want to "rein in" spending in the Medicaid program and use euphemisms like "more flexibility to the states" and "less bureaucratic."

What they’re called is Medicaid Block Grants and Per Capita Caps. The most recent Republican replacement bill for the Affordable Care Act (ACA) eliminates federal matching money for states that offer “expanded” long-term services and supports currently in the ACA, which will eventually destabilize and destroy critical programs. Block grants are cuts and what happens is that poor people are pitted against each other for a shrinking pool of funding. It's cruel and divisive.

So, I'm sounding the alarm. We have to come together to defeat Medicaid block grants to preserve our independence in the community. We have a responsibility to get immediately involved in voicing our strong opposition to the plan and committing the time to grassroots work like letter writing, phone calls, and personal meetings. We have the power to stop this if we exercise it.

Just imagine the reality of cutbacks to long-term services and supports. We must resist to stay alive.

It was there all along

I have to watch It's A Wonderful Life before I feel like I have the holiday spirit. One of these large media conglomerates owns the rights to the film and only shows it once a year during the holiday season without commercials, and I missed it. So now I'm stuck in holiday limbo.

I really only focus on Christmas and Hanukkah because I've been told by several African-American friends that Kwanza is basically something that was made up in the last 25 years and isn't rooted in any African tradition. So that's why I celebrate those two. I'm sure I've offended someone but I'm just describing how I think.

Growing up in an Italian family, Christmas was more of a time to celebrate the birth of Jesus. It's a time of joy and celebration. Somehow it turned out to be too commercial and everything is about cars, toys, jewelry and all that other stuff. My favorite tradition is a tie between putting up the Christmas tree with all the trimmings and Christmas dinner.

If my kids are around, putting up the tree wins but if they're not, hello ham, stuffed peppers and manicotti. I mean, let's be realistic.

Have you noticed all these unknown businesses selling things like liquid rubber, indestructible car polish etc. just popping up on TV during recently? That's the last thing I'm giving as a gift this year but someone probably has been wanting to fix a problematic rubber issue for quite a while and this would do the trick.

Anyway, officially kicking off on Black Friday, shopping mania has shifted into high gear; we rush around getting those last-minute gifts which includes shopping online and doing it fast enough to avoid paying more for quicker shipping. It's all too much!

Well, I think what I'll do is buy It's A Wonderful Life so that I can watch it uninterrupted when I want to without commercials and hopefully rekindle my holiday spirit so that I see the forest through the trees and find the spirit of the holidays.

Who knew? Turns out it's been in there all along. Merry Christmas and Happy Hanukkah.

Peace on earth!

Fool me once, shame on you. Fool me twice, shame on me.

When it was official that Charlie Baker would return to state government as Governor, I went into a PTSD state of fear and anger.

Not many people realize it but he was both Health and Human Services and Administration and Finance Secretary under then Gov. Bill Weld throughout the 1990s. These were rough years for people with disabilities and poor people in general. Back then, as he is doing now, Baker pounced on Medicaid and started cutting and sometimes gutting programs that had a negative effect on the lives of people with disabilities and elders.

He was successful in bringing together a coalition of community organizations that wanted to close outdated and unwanted psychiatric hospitals statewide and build a system of community services and supports so that people with psychiatric disabilities could live in the community and receive services locally. This is something that the disability and provider communities wanted for decades, so after lengthy negotiations with HHS Secretary Charlie Baker, advocates agreed to support the plan provided that funding would be made available for the community side of the equation. That didn't happen and today we have one of the highest rates of homeless mentally ill people in the country.

Another shelling was when Baker attempted to remove the "optional" Medicaid Personal Care Assistance program that provided thousands of  people with significant physical disabilities who live in the community with funding for attendant care. This program had been working successfully since its inception in 1974 but, it too, didn't escape the chopping block. In a surprise reaction after many warnings, the disability community occupied Nurses Hall in the Statehouse and turned it into a "Nursing Home" to symbolize what would happen if the program was cut as proposed. It was occupied for 28 days around-the-clock before Gov. Weld finally relented the plan.

In 1996 Sec. Baker decided that there was money to be saved in reducing and combining state agencies and chose the Massachusetts Rehabilitation Commission, Massachusetts Commission for Deaf and Hard of Hearing and the Massachusetts Commission for the Blind. Once again, the disability community pulled together and fought off the attack by establishing a consortium of different disability groups to stop it in the legislature.

There were other attacks on other groups and they generally tended to be poor and perceived as relatively powerless. When they banded together, however, they collectively had quite a bit of power and managed to survive the carnage, but with heavy losses.

We shouldn't be surprised one bit that today Gov. Charlie Baker is picking up where he left off -- he's attacking MassHealth in the name of "sustainability." Although his chosen bureaucrats vehemently argue that better services can be found with less money, people with disabilities have always come out on the short end of the stick as evidenced by the Governor’s past performance. He is in the process of "re-engineering" MassHealth in a way that hasn't been witnessed in 20 years. Which, by the way, was when he was last in state government.

He's launching a managed care empire that builds off of his history and experience as CEO of Harvard Pilgrim Health Plan. The new plan shifts costs from a fee-for-service model to a managed care organization structure. Similar to private health plans, uniform rates for medical and long-term services and supports would be established and large providers, or Accountable Care Organizations, would oversee hospitals, community care clinics and long-term services and supports entities in the delivery of healthcare. The Baker administration is presently in negotiation with the Centers for Medicaid and Medicare Services for a $1.5 billion planning and implementation grant under the Affordable Care Act.

Again, people with disabilities are challenging the Administration, just as we were in the 90s. Based on experience, we know that back room deals and empty promises will only leave us in worse condition than we were when we started. We can't afford to be duped this time around into believing that the motive in the healthcare restructuring is to "improve efficiency and provide for better health outcomes." Interesting theory but, it's all about the money!

Now, he's decided not to pay Personal Care Assistants overtime. If you don't know what a PCA is or does, it may sound like a reasonable, albeit callous, cost savings measure for a growing program. Don't pay overtime, save money and everything will work itself out. It's all in the details, just like when the psychiatric hospitals were closed in the 90s under then Secretary Baker and community services and supports were part of the deal that didn't materialize.

Over 300 people with disabilities, PCAs and others rallied at the Statehouse on September 20 in opposition of this decision that will destabilize the program and force people with disabilities to receive less personal assistance because their, already delicate system, will be slowly eroded and eventually destroyed. Because of no overtime, good, qualified, reliable PCAs will leave the field and it will get harder and harder to piece a support system together for everyone who uses this program that has functioned perfectly well over the decades.

We won't get fooled again.

Now is the time

I've always been infuriated by the fact that living in a nursing home is an entitlement and living in the community with supports is a monumental struggle. It certainly is easier to live in an institution because everything, in theory, is provided; your bed, your care, food, all of it. What you lose, of course, is control of your life and choices in how are you want to live.

Living in your own home in the community, however, is hard work. It seems that all of the programs we need, require constant fighting and vigilance to get and keep. Have you tried to find affordable accessible housing because if you have, you know that it's virtually nonexistent. Try living on SSI or SSDI and making ends meet. It's extremely hard and there's absolutely no incentive to work.

Living in poverty is the norm in the disability community. We get caught, quite frequently as children, in a system that robs us of our dignity and causes many to fall into despair. We are constantly battling discrimination just for who we are, and then on top of that, we have faceless bureaucrats requiring us to go through endless paperwork systems in the name of "person centered planning" to get somewhere that we never wanted to go in the first place. We wind up appealing the outcome, and so goes the cycle of poverty.

But, when you think about the alternative, we tolerate it and try to improve it. We try to make it better for ourselves and those who come after us. Most people with disabilities become passive service recipients and don't become empowered to challenge the system and hold it accountable. Accountability is a two-way street and state and federal governments must be held accountable. The onus is on them to include us in developing programs and services that support people with disabilities in the home and community outside of nursing homes and meet our needs as we define them and not as they think they should be.

As a community, we must continue moving beyond poverty and passivity in order to protect the gains we've made and take our rightful place in the mainstream of everyday life; this means overhauling archaic rules that keep our incomes flat or don't allow us to work at all and creating new programs that embrace economic and social self-sufficiency.

Further, we have to define our future now because federal and state programs are already being rolled out that will force us into managed care programs for all aspects of our medical and long-term services and supports needs.

Regarding economic self-sufficiency, the Social Security Administration and state Medicaid agencies have such strict and institutionally biased rules that they force us to live in poverty and don't allow us to work without being penalized by loss of long-term services and supports and healthcare. Thus, the default; don't work and stay poor to qualify for Medicaid and long-term services and supports.

Simultaneously, hospitals, managed care organizations, and now, accountable care organizations are engulfing us as drivers behind managed care. They eat away at the core of our values and beliefs by stealing away control of our lives and significantly limiting the choices we have to live independently. Consumer control and choice are the bedrock of independent living philosophy and we are witnessing their demise. It's like watching a train wreck in slow motion.

They’re the antithesis of independent living. They are the medical model!

The broad-based disability community and those other movements that intersect has reached a point in time where, if we don't act collectively to immediately beat back the advancing medical establishment and Medicaid agencies we'll be set back 15 years in our evolution. We've gained so much freedom using the Olmstead decision as a weapon to fight for full community integration and many thousands of people with significant disabilities have left nursing homes through class-action lawsuits and now live in the community as a result. Do we want our fate to be subjected to a hyper-medicalized community support system that feels like we're living in mini institutions in the community?

Now is the time to double down for freedom. Now is the time for all of us to come together as a force strong enough to upset the momentum gained by the medical establishment. Through our combined efforts we must demand that state managed care programs as a result of the Affordable Care Act or otherwise have firewalls that require independent Long Term Services and Support providers to meet with us to plan our package of services and ensure that we are in control of our lives and have a broad array of choices of services so that we can live independently in the community and, in the process, have better health outcomes.

Now is the time to hold state Medicaid agencies accountable as they regulate long-term services and supports like Personal Assistance Services (PAS). As a result of a recent Department of Labor ruling, Personal Assistants (PAs) must be paid overtime when working more than 40 hours per week and all state Medicaid agencies are required to implement these requirements. The result in five states so far has been to place a 40-hour cap on hours of work for each PA. PAs that have been trying to support a family on 60-70 hours per week, for example, will no longer be able to work in excess of 40 hours and will have to find another job in a different field. Over time, the labor pool of PAs will shrink and it will be harder and harder to find qualified and reliable workers.

What's going to happen? With the smaller pool of workers, our ability to have a robust attendant system that supports our livelihood and health will be diminished and, by default, we'll have no choice but to live with less services and have a significantly damaged quality of life. Because we won't have adequate coverage, our health will also deteriorate. We'll stay in bed longer, develop respiratory and pressure sores as secondary complications and become socially isolated and no longer part of the mainstream. Both our physical and emotional health will rapidly decline.

All of this is not hypothetical, it's happening right now. At this very moment Medicaid agencies are enlisting accountable care organizations and third-party administrators for long-term services and supports to queue up for implementation. PA hours are being capped and they are giving their resignations. We are left scurrying for new workers just to survive and finding reluctance because of the 40-hour cap.

This is a blatant violation of our civil and human rights. Now is the time to stand up in the face of injustice and fight like never before to hold onto our freedom to control our lives and make the choices we want for services and supports that enable us to live in the community.

Now is the time!

A Somber Celebration of the Anniversary of the ADA

I'm not sure many people realize that the Americans with Disabilities Act is constructed almost identically to the Civil Rights Act of 1964. Both guarantee civil rights and equality in the areas of employment, public accommodation, etc. Both protect oppressed and historically marginalized minority groups. Both took hard-fought battles to become enacted into law.

It's not a coincidence by any stretch of the imagination; the early pioneers with disabilities who fought for the ADA and integrated life in the community outside of institutions prior to the act being passed modeled our struggle for freedom after the civil rights movement of the African-American community. We watched Dr. King and other African-American leaders organize nonviolent protests and civil disobedience to fight for equality and, eventually, civil rights protection.

Many of us watched from the confines of the institutions we were incarcerated in and slowly grew hopeful that maybe we could organize and fight for the same freedoms and protections. Imagine, civil rights protection under the law; unheard of at the time. People with disabilities had no rights and, as a result, were systematically excluded from community life; most of us were unable to live in the community, there was no right to a public education, hardly anyone had a job of any type, public and private businesses were largely inaccessible, neglect and abuse in state-funded facilities was common and there was nothing we could do about it – it was just that simple.

People with disabilities were hungry for freedom and the African-American civil rights movement gave us that spark of hope that we too could fight and eventually get civil rights protections. Little by little, we did just that. In my opinion, when the disability rights movement and the independent living movement joined hands in the struggle for freedom, that was the nexus that helped develop the "field operation" that was the engine that organized and fueled protests and actions that pushed the Congress to pass the ADA and president George H.W. Bush to sign it.

I could go on and glowingly talk about the gains we’ve made as a community, and we have made many, but like our African-American brothers and sisters, we are still under attack and still, by and large, poor and discriminated against daily. In fact, the majority of African-Americans that have been murdered by police in recent years are people with disabilities. The Civil Rights Act and the Americans with Disabilities Act were monumental achievements in modern history but the struggle for equality and our rightful place society feel more like wishes than reality.

As we celebrate the 26th anniversary of the ADA around the country this month let us not forget that so many of our brothers and sisters are still rotting away in nursing homes. Let us not forget that we are the largest and poorest minority group not only in the country, but in the world. The overwhelming majority of our people are unemployed and on public assistance; we're in an intergenerational cycle of poverty and dependence. We must collectively raise the bar of expectation for ourselves and fight against systemic oppression simultaneously. The so-called ADA generation who have grown up not knowing what it's like to live without civil rights must carry on the fight and push for a better tomorrow with vigilance and urgency.

The torch has been passed and the future is in your hands.

I'm never going back to living in an institution

The chickens have come home to roost. When the Department of Labor issued its Overtime ruling in June 2015 it was widely believed that the viability of Personal Assistance Services nationally was in serious jeopardy. Now, with some 10 months to settle into state Medicaid agencies, we are witnessing a full scale attack on the programs that we’ve fought for and built over the last 40 years.

New York, Texas, California, Illinois and soon Massachusetts PAS programs are on the chopping block for governors and legislatures to "find savings" by capping hours, prior authorizing services and hours, increasing difficulty of program eligibility and other measures that will result in less attendant hours and a more onerous and less responsive state Medicaid program. The carnage has just begun.

The new FLSA rules have required that the Massachusetts Medicaid program pay approximately $1 million more per month for overtime pay. Policymakers argue that this rapid growth in the program is not sustainable. They have a point! The question is what is our response as a community? There certainly is a strong civil rights position thanks to Olmstead. There is also a cost argument when comparing institutional living versus community living.

Bureaucrats and legislators are generally penny wise and pound foolish and just glaze over when you talk about the incredible amount of money that's saved when somebody leaves a nursing facility and uses PAS in the community. When a state is hemorrhaging Medicaid money now, they don't think long-term.

By default, if nothing else, the answer is that it's our civil right to live outside of an institution and it's the states responsibility to pay for the services we use. The rub is, what's reasonable. What do we demand as a reasonable level of service that meets our needs to live a quality life? Whatever the outcome, we need to move quickly to mitigate against the changes that have already been made and stem the flow of future attempts to gut the program.

I've been using state-funded PAS for the past 31 years to live outside of an institution. Prior to the Massachusetts PCA program in 1974, I lived for 7 years in institutions and I'll never go back. I'm going to do anything it takes to fight off unreasonable restrictions that jeopardize my independence and that of over 25,000 other people with disabilities in the state.

Our voices will be heard and we will prevail!

The Perils of CommonHealth: a personal story

I've worked my entire life. In the late 1970s a group of us got legislation passed to create a state funded Personal Care Assistance program that enabled people with disabilities to work and earn an income and not be subject to Medicaid rules that held us back for decades by forcing us to live in poverty and not be able to work. Chapter 599 Medicaid as it became known, was the way out of poverty for hundreds of us. One by one we went to work and 599 Medicaid kicked in so that we could still have it pay for PCA and Durable Medical equipment. It truly made the difference for many of us to choose between a life of poverty and a life of opportunity through employment; one where we could, work for a living, save money and, for once, be on a level playing field with those who don't have disabilities.

The program became so popular that Gov. Michael Dukakis included a model of it in his 1988 Omnibus Bill that was the foundation of what was then called the Massachusetts Miracle. The new program was called CommonHealth and it too was a pathway to employment for people with significant disabilities that needed PCA and DME as well as prescription drugs. Once the bill passed, lawmakers decided to combine the existing 599 Medicaid program into the new CommonHealth program with the promise that nothing would change and it would be available to a much broader group of people with disabilities. CommonHealth had practical measures that included a copayment for people who earned more than 300% of the federal poverty level. Certainly fiscally responsible and wasn't met with any resistance.

So, the over 500 people in 599 Medicaid took a leap of faith and switched over to CommonHealth little by little. Again, the deciding factor for all of us was that nothing would change. But, we eventually realized that there was a huge change that none of us anticipated. Bureaucrats at Medicaid never raised a red flag to point out differences between the two programs. People with disabilities were happy just to work and have a program to support us. We did demand that there be no income or asset limitations and that eventually was incorporated into CommonHealth but lurking in the small print were deadly provisions that have now come to completely undermine us.

We learned that CommonHealth was part of a large Medicaid waiver with the federal government. As such, the program is subject to certain Medicaid rules and the biggest enemy is called Estate Recovery. What does that mean? It means that once I turned 55, every penny of CommonHealth money spent on Long Term Services like PCA will be counted against my estate when I die and MassHealth will clawback every penny from my family. It will and has devastated survivors of CommonHealth recipients. It's forced their estates to pay hundreds of thousands of dollars back to the state. When confronted, MassHealth throws up its hands and says that it's a federal requirement. What happened to the mantra that wooed us into the program; nothing will change. There was no provision in 599 Medicaid to take back money from our families that was spent on us when we die. It's an unconscionable practice and we were duped.

As if this isn't bad enough, program guidelines for CommonHealth also require a person to impoverish themselves in order to continue receiving Medicaid funded services like PCA and DME if they can no longer work or reach an age where they want to retire. So you work your whole life, pay your CommonHealth premiums and when you can no longer work you have to "spend down" into poverty where you were when you started and live the rest of your life without the benefits of your labor, judicious savings and, if you're lucky enough, retirement income. Another unconscionable bait and switch that none of us knew about when we were led like lambs to the slaughter from 599 to CommonHealth.

This is a call to action! We will rise up and defend the right to work for all people. We won't tolerate any more disincentives to lifting ourselves up out of poverty and into the mainstream. We won't be silent; in fact, we'll propose legislative changes to these guidelines that will prohibit forcing us into poverty after a lifetime of work and allow us to stop working and/or retire with dignity and with the savings we've earned, assets we've acquired and a quality of life we deserve.

Don't sit this one out

As people with disabilities we have an opportunity change the outcome of the upcoming presidential election. Regardless of your party affiliation or candidate of choice, the fact is that collectively, we have strength as a voting bloc. There are approximately 33.7 million Americans with disabilities of voting age and are about 20 percentage points less likely than those without disabilities to vote, and 10 points less likely to be registered to vote.

Quite a bit of this is due to inaccessibility in polling places. Of those voting in the past 10 years about 8% of people with disabilities encountered such problems compared to less than 2% of people without disabilities. But also, much like the general public, there is significant apathy and a disconnect with the political process and those running for office.

That said, we can't sit this one out! At stake are issues like healthcare, education, climate change, the economy and employment, reproductive rights and on and on. Each of these issues resonates with our community and each is under attack.

Further, perhaps most important, is that the next president will most likely make key appointments to the Supreme Court. Three of the court’s nine justices will be in their 80s and one or two have hinted that they plan to step down soon. The Democrats have the most to lose because if a Republican assumes office, they will have a much easier time moving nominations through the Senate which is controlled by Republicans. President Obama, on the other hand, will face a bruising brawl with whomever he nominates to replace Justice Scalia.

Future justices could potentially face cases on everything from campaign-finance, affirmative-action, abortion and voting rights. In an age of Intersectionality, especially from youth with disabilities, these are our issues too. Issues of social justice that affect everyone.

The upcoming presidential election in November may result in one of the most important presidencies in recent history. Throughout the country there is a growing number of organizations that are aggressively involved in voting registration for people with disabilities such as Texas ADAPT and Massachusetts REV UP because of the importance of our vote and our collective power as a voting bloc to make sure that our issues get addressed.

If you are not registered to vote, register immediately and all of us owe it to ourselves and all those who came before us in the struggle for disability rights to exercise our power. It has come at a tremendous cost.