Facebook archive No 1. It started here with a letter to the State

This is the first of multiple posts that seek to archive this fight as it unfolded on facebook. Things seem to disappear off facebook. News lasts a day. People click their angry emojis in solidarity and then its over. Scroll on by. We can’t afford to scroll past this. We are fighting for the right to live and thrive in the community. A nursing home placement means prison and death. We are not making this up. I’ll find you the statistics by and by.

“To whom it may concern:

My name is Erik Ferguson. My wife and I are recipients of home care services through the department of Aging and Disability Services/DHS. I am 43 years old and my wife is 36 years old. We both have severe physical disabilities and have lived successfully in our own home for the past 12 years through a very carefully constructed network of home care workers.

Without this service it is likely that we would not survive or would be forced into substandard nursing facilities at a young age. There we would succumb to abuse and disease. We have seen it happen before. Friends have been abused, friends have died under the care of poorly staffed nursing facilities and adult foster homes.

Recently we were informed by our case worker that the business office has decided to stop issuing probationary provider numbers for HCW's far in advance of the January 2021 stated deadline with no warning and no transition period. This decision has dire consequences that deeply impact our ability to hire and retain HCWs. I am sure that somewhere the powers that be have decided that this decision would be best for our health and safety without actually consulting consumers themselves.

Without probationary provider numbers the wait time between meeting a prospective HCW and actually getting them paid will be approximately 3 months. For example, we recently met someone and decided to hire them. However, our worker informed us that the next orientation is not until July 18th and those orientations fill rapidly. After orientation the background check takes 6-8 weeks minimum. Longer if they have recently lived out of state. The vast majority of the time a prospective employee cannot afford to wait that long for a paycheck. It is highly likely we will lose our most recent prospective hire and we are left with unacceptable gaps in our care. There is no back up.

The state registry list is not functional for obtaining a temporary worker. Most people on that list never return our calls, some of the information is out of date, some individuals on the list have turned out to be scam artists, the list contains no details about the type of work they can perform and our needs are complex.

An agency is also not an option due to a plethora of rules and regulations. We tried an agency in the past and routinely suffered violations of privacy in the name of health and safety. Imagine laying in bed with your spouse in the morning in various states of undress and having a nursing manager show up unannounced in your house and bedroom. Imagine not knowing exactly who was going to show up at the door to care for you. An agency did not work for us.

We recently lost multiple HCWs. One hurt their back and decided to go to grad school, One got pregnant, One decided to buy a one way ticket to europe. Lives change. We must be able to hire new people and you have made it excessively difficult.

We feel we are being bullied into the Independent Choices program. A program which, while offering more autonomy offers less pay and zero health insurance for HCWs. We care about our employees as they care for us and many of them depend on the health insurance. The benefits are the only thing that offsets the low pay rates.

Please see the attached letters from our homecare workers detailing their experience trying to work for and get paid through the state.

We will be filing complaints with BOLI, Disability Rights Oregon, and the Office of Civil Rights. There are more of us and you will be hearing from them as well.

I sincerely hope you take it upon yourselves to give this issue the attention it deserves.

Regards,

-- 
Erik Ferguson

Welcome to the Fight: Disability Rights, Homecare and the State.

We have long believed that Wobbly was more than a dance company. Wobbly is a philosophy, Wobbly is a way of life that centers around the belief that people with disabilities deserve more than bare bones survival. We deserve to thrive. We deserve to change the world.

To that end we are opening up this website to discussion of the fight for disability rights. Currently, locally and personally the fight centers around access to state funded homecare. We will use this blog to archive conversations happening on Facebook around these topics so that our words will not disappear. We will use this blog to dream bigger, beyond the state to new visions of a glorious interdependence, a new way of neighboring, a new way of belonging. Welcome. The field is open to comment. Hate Speech and disrespect will not be tolerated. Bring your best selves here. Thank you.