Only Anecdotal

I have taken off the entire week for Thanksgiving, partly to prepare for the turkey, and partly to get some sort of a break before the commotion around Dual-Eligibility starts in earnest.

I am stunned in many ways at the number of referrals that sail into my office now. When we first started the project four years ago, we expected to be inundated with calls from social workers and others who were trying to help people remain or reintegrate back into the community. Imagine… a free service that gives that connection…

But we all know the story: new project, something else to remember, a hassle. Or, if it works, another trusted part of the community, a stepping stone, a colleague. I guess I have gotten there. Many of the people I see know someone else who regularly makes referrals to me. We have a wonderful community now, most of the time.

Still standing in the way are the agencies and entities with their own interests preceding those of the consumers they serve. Growth can destroy an agency if it happens so quickly that the agency loses sight of its core values, or if those core values are skewed to begin with.

Last week was filled with the sort of heartbreak that comes from a completely messed-up system. I am already frustrated enough with the incredibly restrictive nature of Medicaid waivers. As I have stated in the past, why a waiver? Why is the system still filled with such institutional bias?

And why, when a person has a brain injury or a life-ending illness, or a significant physical disability, why oh why do we attach those waivers only to getting out of a nursing home?

To explain, we have some waivers in Massachusetts that pertain only to people who have “served time” in an institution for ninety days. If you have an acquired brain injury, for example, there is hope if you have been incarcerated in a nursing home. Money Follows the Person, a demonstration project for Medicaid recipients, also is based on that same nursing home stay.

So, Olmsteadians and others, where are the Home and Community Based Services to prevent these nursing home stays in the first place?

I need these resources, RIGHT NOW, for the people I see. They keep asking, you know.

I don’t like to tell people that the options are to become impoverished, to divorce the people you love, to play the system and make it work… It just seems immoral. It is.

I am so thankful, thankful for the mere thought that our country has ventured into territory that even questions the barbaric healthcare system that we have. We seem to ignore that people actually do age, get sick, need help, remain human.

I am thankful for my own health as I write this, as transient and wonderful as these moments are.

I am thankful for the freedom to fight for what I believe in, and I believe that healthcare is a human right.

I am also thankful for movies like the one I saw this weekend: The Sessions. Thankful for humanity, love, emotional, for the physical body and its existence on earth. Thankful for creativity, and humor, and once more, thankful for love.