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!

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.