As I am likely the person most impacted by recent policy decisions at Pine Lake Fund, I believe that I have a right to communicate directly to Board of Directors who make decisions that directly affect me. The Board President and the Executive Director felt otherwise and they attempted to silence me, instructing me to send all communications through the Board President.
This felt like a deliberate attempt to keep me distanced from those who are making decisions that affect me, such as taking away my health care coverage, and to open my communications up to censorship.
They failed, and I took it upon myself to find the email addresses of each Board Member. I delivered the following letter.
Pine Lake Fund Board of Directors:
I’m writing you to let you know of the impact of your decision to change the number of hours that an employee must work in order to be benefits eligible from 32 to 40 hours per week. This, coupled with Pine Lake Fund’s unwillingness to provide 40 hours worth of work to employees like me, is stripping me of my health care coverage. This decision is nothing short of violent, and you have seemingly made full time benefits to be intentionally out of reach. Your actions are cruel.
I am disabled. I have Type 1 Diabetes, a chronic autoimmune disease that, without continuous medical intervention, will quickly lead to my death. The financial cost of health care for Type 1 Diabetes has been described as “staggering” and “a source of great stress and anguish for patients and families.” (Children’s Diabetes Foundation) “Stress” and “anguish” are two words that accurately describe the experience of me and my family since learning of the your decision to make this policy change.
The financial cost of Type 1 Diabetes is estimated at $20,400 (T1International) annually which is nearly 75% of my net wages from Pine Lake Fund. Without health care coverage, this cost is a burden for me and my family to bear alone and would surely plunge us into poverty. This high cost of medical care is why 1 in 4 people with diabetes ration insulin, a practice that directly leads to negative health outcomes including diabetic ketoacidosis, coma, and death. This is the reality for people living with Type 1 Diabetes and it is summed up in a simple phrase: pay or die.
Allow me to bring your attention to the Pine Lake Fund website. Upon reaching it, visitors are greeted by our Mission, which is “to collaborate with individuals with disabilities to overcome barriers to increase access to, and success in, postsecondary educational experiences and employment.” Your policy change is violent and ableist, and stands in direct contradiction to our Mission. It will force me out of my job in search of one that provides health care coverage, and it creates barriers to employment which disproportionately impact people with disabilities.
Below our Mission Statement lies the largest text on the page, boldly stating that “people with disabilities embody a vital and unique identity that enriches the tapestry of diversity in our communities including within postsecondary education and workplace settings.” Without meaningful action, statements like this are mere platitudes. In light of the recent policy change, this statement becomes a blatant misrepresentation of what Pine Lake Fund is and who its leadership is comprised of.
Just a little bit further down on the same web page are customer testimonials, the first of which specifically names me and says, “Pauly was fantastic. When I was having personal problems outside of looking for jobs he took the time to listen and hear my pain and empathize. He realized that I needed to be supported and went above and beyond.”
I want to be clear: I believe that, as someone with disabilities, my presence within this organization is indeed “vital”. My experience shows me that this organization and its leadership believesthat me and my presence are expendable.
Healthcare is a human right. Your policy change is an attack on that right and it neglects your responsibility to your employees. The high cost of health care prohibits me from accessing what I need to stay alive, unless I have health care coverage which you have taken from me. Pine Lake Fund purports itself to be an organization in the service of people with disabilities, while simultaneously enacting shameful, ableist, and discriminatory policies.
Sincerely,
Pauly
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