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.

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!

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!

Don't mourn, organize

For people with disabilities who employ Personal Assistants there is cause for great concern. Recently, the Department of Labor issued new guidelines relative to overtime payment for Personal Assistants. While it does address the long-standing need for overtime payment, it also creates an opportunity for state Medicaid agencies to use it as an example of a "budget buster" and rein in spending in the program. This is often accomplished by putting a cap, or limit, on PCA hours or by requiring a greater number of Activities of Daily Living to become eligible as was already done by the Baker administration. If we don't organize a grassroots movement to keep all the gains we've made in the program, we may lose valuable long-term services and supports that keep us living in the community.

We have to work with the administration to make sure that we know what the state's plan is to support and implement these changes and whether any anticipated additional costs will be in the FY 17 budget. Once we know, we'll be ready for a plan of action.

Plans are actively underway to create a coalition of PAS users who will work with state officials and legislators to ensure that the MassHealth PCA program doesn't fall prey to cost-cutting by bureaucrats and legislators. Cutting costs parlays into a rollback in services and reduced availability. We will work with the existing PAS coalition and other groups to enhance our mutual goals. When we're together, we are stronger.

Don't Mourn, organize!