Squeaky Wheel of Saṃsāra

July 5, 2019

Living on disability with pain – Open Letter to Mayor O’Connor.

Filed under: Affordable housing, Social Change, Welfare System (Frederick MD) — Vladimir Tolskiy @ 11:04

this is an open letter

Dear Mr O’Connor,

Last Spring I contacted you about my inability to afford rent in Frederick due to my condition. I also wrote about living with severe chronic pain in poverty.

 

Fortunately, my living situation has improved since, thanks to the generosity of the individuals who helped me stay in Frederick.

 

After I reached out to you, I was referred to the Community Action Agency and they tried to convince me to enlist into the Waystation housing program. As someone who spent a lot of time in a peer support center/mental health consumer advocacy organization, I have some sense of what that program is on the inside.

Way Station

The Way Station has a number of programs that are helpful to someone who was recently discharged from a mental hospital. However, the housing program that they have is very predatory. Once bound to the program, a client finds it difficult to step out of this relationship in order to seek better options. Waystation housing is not cheaper than rent in Frederick while it offers less freedom and flexibility compared to a typical landlord-tenant agreement. For example, Waystation clients cannot choose their roommates.

Keeping people sedated with large doses of medication plays a considerable role in their business model, keeping anxiety, tensions and customer complaints to a minimum. Clients are strongly encouraged to take psychiatric medication in order to stay in the housing program. Do you believe that I must endure the side effects of psychiatric medication in order to keep a roof over my head?

 

Waystation becomes a legal representative and payee for individuals who obtained a disability status with their aid.  This for-profit organization collects their SSI, leaving a small monthly allowance to the client. Clients who try to become their own representatives in order to gain more independence encounter roadblocks.

From multiple sources, I know that Waystation’s Mandala House had a black mold problem that remained unaddressed for several years. A distressed resident of this house, who suffered from chronic allergy, had shown me photographs of the mold on his phone.

 

My friend who had the pleasure of living at the Waystation’s housing program for several years described it as a “factory farm for disabled people”.

Deliberate manipulation.

When I was discharged from FMH psych ward five years ago, I was directed to the Waysation for all my future needs, including housing. Nobody advised me to enter the Public Housing waiting list that would have provided me with secure housing by now. Instead, I was directed the route that was more profitable to the stakeholders of Shappard Pratt, not the route that would have helped me to continue my recovery in safer conditions. My limited knowledge of the programs at the time was used against me.

 

My inability to afford rent for a livable space in Frederick is not a good reason to turn myself over to an oppressive for-profit mental institution that would take away most of my money and provide me with substandard housing, while giving me less rights than a regular lease does.

 

Five years after my hospitalization, I wrote to you asking for a better solution.

Following your request, the Community Action Agency directed me to the Waystation program again. I was told by the Community Action Agency representatives that other options are not available to me. This chain of references had clearly not been arranged to serve my best interest.

 

My health problems involve chronic physical pain from spasms. My spasms result from anxiety that directly correlates to my sense of insecurity and inability to provide for myself. Doctors describe it as a psychosomatic illness. I do not need the services provided at the Waystation, yet I find very few affordable resources for poor, disabled people with chronic pain in Frederick.

 

I need eight hours of good sleep to reduce painful spasms. Presently, I am grateful that I was provided this ability after not having it for five years. Many traumatized, poor, homeless people of Frederick survive on less than 4 hours of sleep every night.

Welfare in Frederick.

To an executive in a high office, who receives a five or six digit salary, the welfare services of Frederick may appear as a solid safety net. Yet to someone with poor health, whose income is two or three orders of magnitude less than that of a director, the safety net resembles a loose patchwork of “poor people” services, offered by disconnected organizations. The services are difficult to navigate. People are channeled into programs that do not serve them and their restraint in transportation does not allow them to make truly free choices.

 

As I transitioned from being a severely traumatized adolescent into a young working poor student and then became a disabled adult, I wandered through the circles of hell that people who live on welfare have to endure. The limbo begins as one has to re-describe their condition of poverty in variation of its aspects according to various criteria on a multitude of forms, for different agencies. Staff is also not always polite and not free of judgement. 

 

Many religious organizations impose a very judgemental admittance criteria for their programs that is devised from their subjective moral values. How many of those religious, government-subsidized organizations would write their admittance criteria to welcome an LGBTQ person, vs. trying to screen them out? How many of them harbor hostility to various minority communities? Has anyone done a study on that?

 

Across many welfare organizations, a large staff is paid a steady middle class wage to keep a poor man from receiving an extra hundred dollars from the system. This understanding also adds to the overall sense of oppression.

 

Filling out forms and keeping up with letters from various agencies becomes a full-time job in itself. For someone who had to move from place to place, 8 times in a year, this amount of letters is difficult to manage. Many agencies have to be updated about an address change. For many people, this constitutes a great obstacle, along with transportation to Social Services and other “poor people organizations” distributed around Frederick.

 

Driving our homeless population out to the airport zone or to the Monocacy River floodplain, away from the tourist district and the Carroll Creek, is not a very humanistic solution.

 

The extra $400 that I earned on top of my SSI last year, added so much reporting paperwork to my life that I regret earning it, at less than a minimum wage rate. At the end of the fiscal year, I received numerous letters with requests to clarify my income from different organizations. One unfilled form or small criteria and vital ‘benefits’ can be cut off, often without a clear warning.

 

Recently, my food “benefits” were cut off after I was told that everything is taken care of at the counter of DHS/DSS, the day before. I had to rush there again to learn that DHS/DSS staff could not reach my former employees and therefore cut off my food stamps. My refrigerator remained empty for three days before my food stamps were reinstated. I suffer from digestive health problems and I need to eat healthy, three times a day to remain functional. If I go to the hospital it would cost more to everybody.

 

I believe that my knowledge and experience of being poor, living with the stigma of mental disability and having the capacity to analyze my experiences with various agencies can be very useful to improve the welfare system of Frederick.

Maybe Frederick could implement some models similar to “Housing First” and “Open Dialogue” that is successful in Western Europe.

 

Other concerned constituents and I would like to request a meeting with you to discuss the possibilities of improving welfare and mental health care systems in Frederick.

I would like to request resources to conduct a large study of sleep deprivation across the vulnerable population of Frederick.

 

Sincerely,

Vladimir Tolskiy.

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