Invisibility of the Disabled Makes for Disastrous Probate

My Story

I consider myself relatively young (early 40s,single, no kids), especially since I thought I'd never live beyond 30. I was just turning things around in my life after a failed marriage and a job I loved (as a stepping stone to greater things) when I had to take unpaid medical leave--no one knew what was wrong with me.

Then when specific symptoms that couldn't be explained away or ignored showed up, I was given a preliminary diagnosis of a progressive, incurable disease, it took almost two years to obtain the final and documented diagnosis 9 months ago. The rug was pulled from underneath me. I went through extraordinary efforts trying to take care of ailing parents while fighting for my rights to the state's short disability income, my jobs' short-term disability income and what was supposed to be a "seamless" policy where the short-term disability case automatically rolled over to become a long-term disability case.

While fighting for my rights, I never had the chance to adjust to what my new life might be and what being disabled and not having income from work would be like. Ultimately, that job's tyrant Executive Director (my boss) made certain that I would die trying to obtain the long-term insurance. I chose to live.

Just as things were starting to look somewhat promising in terms of organizing 3 years of piled up paperwork from the move to help my elderly parents and all of my paperwork, collection bills came my way from my two health insurance companies that I had for a period of 1.5 years--everyone wanted to blame the other and not pay anyone anything.

This fight continues...when I became aware of this situation, it feels like I am slowly dying. I couldn't take my 30K/year medicine for 2 months because of bureaucratic rules that no one was clarifying or fixing. Not surprisingly, my health took a dramatic fall during the entire Spring 2010, but slowly things seemed like my future might be a possibility.

Then, my father suddenly died of a heart attack. The special needs trust that he sought legal advice on were just scribbled notes; a few emails existed showing he'd heard of this type of trust and wanted to know how to set one up properly so I would be able to finally learn to adapt to this disease and move forward to a different kind of life where I would not be constantly consumed with money worries. My father died two weeks after this special needs one page addendum to the family trust was drafted.

Mom and Dad disagreed on some minor part of it, so it was never signed. Without the special needs trust, my life, any kind of life as I'd know or hoped bare bones for, was over in my eyes.

Upon hearing of Dad's death, family appeared out of the woodwork taking control of Mom's 'vulnerability' in her needing 'help' (CPA and Esq. brothers). Despite emails showing Dad had sought advice from both brothers regarding the special needs trust, once they 'appeared' for the funeral and burial, both brothers denied knowing anything about a special needs trust. Being the disabled person that my Dad was working hard to protect me from estate taxes and probate, I am now at the mercy of my mother.

My day is consumed with not knowing when I'll be kicked out of their house (small mortgage remains), homeless, careless, foodless, etc).

I cannot afford to live and mother more than dad made daily comments to put me down to an emotional state of "less than" any and all the living and non-living.

What is a disabled person to do in a situation such as this extremely dysfunctional situation? I hope someone has some better advice than the uncle who said (in front of relatives that backed his view of me as a burden...),

"Tomorrow wouldn't be soon enough for your death. I know how to kill you, and if I really wanted to, you'd be dead by now." He said this with a smile on his face. I learned that the family I thought I could trust were actually wearing masks hiding their actual disgust of having a disabled relative.

No Dr. Phil, no Oprah, no Bill & Melinda Gates, or other such celebrity/socialite names could help me. Where does that leave me, the disabled burdensome family member who apparently is responsible for everything in the world that's gone wrong, where does that leave me? I don't want to be 6 ft. under? It seems that they've already won, though.

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Aug 04, 2010
Hang in there
by: Mo Johnson

Hi, thanks for writing in and sharing your story. I'm sure there are others out there with similar problems. You help them out just by sharing your experiences with all of us.

You sound like a tough guy; congrats for hanging in there as long as you have. It seems like you need to find a person or group experienced in disability issues to guide and advocate for you.

Are you in touch with any of the disabled persons advocacy groups?

Sep 29, 2010
Special Needs Trust
by: Anonymous

I think you did the right thing by opening up a Special Needs Trust. I have a disabled child and I opened up a Special Needs Trust Fund.

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