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!

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

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

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

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