A video supplement to our series: Mental Health 3.0
Video and text by Lydia Wilson
A North Carolina mountain family wants to stay together in their home, perched up a windy road, in the furthest corner of the state, near Murphy.
Nancy Graham is 37 and has a developmental disability, the result of a genetic disease called Tay-Sachs, that’s slowly eating away at her nervous system. She’s lived 25 years longer than doctors expected. Her younger brother already died from Tay-Sachs.
The Grahams say they worry about the changes coming to Smoky Mountain Center, the Graham’s Local Management Entity (LME), as a result of the newest reform of the system that cares for people with mental health and developmental disabilities. They fear the changes will make it harder to stay together as a family.
If the Graham’s moved Nancy to a nursing home, the state would pay more for her care, and they believe she wouldn’t get care that’s as good as what they provide.
But, the Grahams are being given fewer services to use for Nancy’s care because she lives at home. To stay at home, their LME instead asked them to rely more on ‘natural supports’, that is, free care provided by the Grahams at a lower level of payment. But the Grahams would like to get a little more money from the state so they can afford to keep Nancy at home, and keep her out of an institution.
Mental Health 3.0 is adapted from Lydia Wilson’s thesis for a Masters in Journalism from UNC Chapel Hill’s Medical Journalism Program.
The title image is adapted from a portrait of Dorothea Dix, a 19th century crusader for better mental health care, that hangs at the National Portrait Gallery.
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Another very clear example of persons in need through no fault of their own, i.e., genetic, of being more and more dependent upon a system that as a policy makes less and less funds and services available in a setting that seemingly is a more merciful and compassionate choice, the client;s home but which is budgeted to have less and less funding. Talk about institutional trickery and cruelty. And everyone will blame someone else in, pointing to a removed policy making or decision making body that they have become helpless supplicants to and forgotten the art of patient advocacy. Our providers and prisoners and their superiors are Quislings, traitors to the persons they serve.
Frank B. Miller MD DFAPA