The luxury of rain today, instead of snow. Noise instead of silent accumulation.
I'm still recovering from this week's events. With events of this type, there's little action to report--it's all interior, all email and phone, some meetings. Although the emotional impact of this is much like a bar fight or a surprise attack.
We met with a disability services advocate (a private advocate) early in the week. We'd met with her before, once, for some basic orientation, to touch base. We met with her this week because I'd refused to sign Robert's plan of care for the Medicaid waiver.
I've been told a lot of things by various service coordinators and case managers over the years we've had access to state services (which we cannot do without at this point, given the complexity of Robert's care, his weight, our own aspirations). That Robert will only get 40 daytime hours of nursing care moving forward, period, into adulthood. That the State will give us less care after Robert graduates from high school. That if Robert ever demonstrates good intelligence, he will be kicked out of one half of his services because those are only for people with cognitive impairments, regardless of the level of physical disability. And more.
It turns out that these are all incorrect, whether the bearer of the information was only incompletely informed herself/himself, or manipulative, or, well, fill in the blank. A silent accumulation of fear and pain.
Maryland's coordination of services for children and adults with disabilities is very poor. Two agencies under the umbrella of the Department of Health and Mental Hygiene, the Developmental Disabilities Administration and the Medicaid waiver programs, appear to have no interagency communication. In addition, the processes are not transparent for either agency. With the excuse that these services are not "entitlements" (apparently how the state treats people with disabilities has nothing at all to do with human rights) and the expressed desire to remain "flexible," no programs describe or list their services. The effect is secretive.
A lack of transparency creates anxiety. Anxiety can morph into fear. No one should ever be treated like this, like the Stasi treated their own citizens--as objects of suspicion, persons without implicit rights, anxiety and fear their primary controls, along with disinformation.
When I was very young, my father served his Army tour of duty in Stuttgart, Germany. The Berlin Wall still existed then, and, as a toddler, I stood on it while my mother says she nearly froze in mortal terror. My own impulses then were to explore and try to dash. All along the wall were men with guns, safeties off. My mother had the distinct impression they would shoot at any movement, even that of a child.
Hypothetically, the Cold War is over, but it lives on in metaphor and analogy, in the way any State treats its own taxpaying citizens with an arms-length contempt. We like to speak of freedom in America, but that happens only if you, yourself, are capable of maintaining a near-complete self-reliance. The State doesn't give some of us freedom, it takes what little we have away.
The best defense against this is, of course, speech. The chatter of the rain.