Labels and Rights

I teach teenaged students who have significant disabilities. They are all labeled as having "severe cognitive impairment" (SCI). This does not, however, mean that they do not learn or that they are not capable of achieving academic gains. It unfortunately can mean that academic learning and independence skills are not high priorities. Staff, parents, (and even the students themselves) see independence or academic success as unattainable, unrealistic goals.

One of my students (who I will call Katja) stands out as an exceptionally smart, beautiful, capable, and interesting young lady who would be seen as a person with unlimited potential-- if not for her disability labels. Due to developmental delay and mental illness, she has been institutionalized at different times during her pre-teen and teen years. Now seventeen years old, many labels have been put into her 1/2 foot-thick paper file: Aspergers, autism, cognitive impairment, emotional impairment, schizoaffective disorder, schizophrenia, bipolar mood disorder, attention deficit. By definition, it is not possible for her to have all of these conditions, since some of these diagnoses preclude the possibility of some of the others. This disabling litany does not describe Katja the person.

Over the past year-and-a-half, Katja has made stunning progress socially and academically. She has steadily increased her measured reading skills from below pre-K to around a 3rd grade level. Put concretely, she has gone from only being able to identify most of the letters in the alphabet to being able to read phonetically with 80% accuracy and able to identify over 200 sight words. In terms of "mental years" that's an improvement of six years. And she continues to improve her skills at a high rate. Social/emotional improvement has been evident in her improved ability to communicate her feelings without "melting down." She shows empathetic interest in the feelings and well being of her classmates and staff. For over a year now, she has not demonstrated any behaviors at school that could be considered harmful to herself or others.

I cannot express how proud I am of her and and how hard she has worked to overcome learning disabilities, fine motor impairments, phobias, and hallucinations. In short, she is simply amazing. And for the past several months I have advocated for her educational rights with the same passion I would for my own daughter. It never, ever, crossed my mind that Katja wouldn't even get a chance to live at least semi-independently. Until today.

Katja's mother called to talk to me about getting paperwork for guardianship started. Her 18th birthday isn't until May. I suggested that she might want to look at their legal rights between now and then, because there are some potentially negative consequences for a person becoming the subject of "guardianship." In worst case scenarios, courts have the right to assign ANYONE to be the person's guardian after the original guardianship request has been granted. So, bluntly, when the parent/caregiver dies, there is nothing set in place to transfer guardianship to someone who actually cares about or even knows the client. Katja's mother was quite frank in telling me that she didn't care about any of that. She planned to put Katja in a group home as soon as possible. The only reason she cared about guardianship was to have a legal right to visit with her daughter when she wanted to.

I listened and remembered the facts,

• I don't know what Katja and her mother go through at home.
• I don't have a right to care.
• I don't have a right to have an opinion.
• I don't have a right to give an opinion.
• It's my job to provide whatever help and documentation the parent wants to implement plans for her child.

I listened. I met with the school psychologist. The school psychologist called mom to talk about and schedule what evaluations needed to be done before a guardianship hearing.

Then I cried all the way home from work.