|The front of Western New York Independent Living (WNYIL).|
First Progress Report
I did not start my internship until the end of January, as that is when classes began. Immediately upon arriving back in the office, it was recommended to me by my supervisor at the time, Todd Vaarwerk, that I update certain documents pertinent to my career. These documents included my resume, my LinkedIn profile, and a document called My Advocacy, which profiles various and numerous works of advocacy that I have done throughout my life. The resume, the LinkedIn profile, and the My Advocacy documents are attached.
After I completed those documents, there were a number of small housekeeping issues to keep track of. At one point, Todd asked me to find out whether or not state law requires sign language interpreters at educational meetings where a deaf person is present. I researched the matter fairly quickly, and found proof for him that state law does, in fact, require the interpreters to be present. A great deal of my work with Todd has involved short research projects like this. Todd has said to me in the past that he likes working with me because I often give him answers the same day he asks for them.
The biggest item on our agenda for the end of January and the beginning of February was getting ready for the 2015 NYAIL Legislative Day. NYAIL stands for the New York Association on Independent Living. This is the agency that coordinates all independent living efforts from across New York State. On February 11, we drove all the way to Albany, New York, and lobbied the staff of various legislators. Sometimes, we lobby the legislators in person. We are given a set agenda to work with as we do this. I have much previous experience with lobbying, and I believe I did well.
I am now officially done with my time as an intern for Advocacy and Public Policy at Western New York Independent Living. In that time, I have learned much about the independent living movement and disability related policy work. I have learned, for example, that often the most effective way to enact change is to speak directly to the powers that be. I have learned that the powers that be can have many faces, such as educational supervisors, legislators, staff members for legislators, members of other agencies, and people in virtually any business that can exist. This is because disability is such a pervasive piece of the human experience that there is no portion of the organizational structure of society which it does not touch. One of the phone calls we made was to the supervisor at a cab company about accessible cabs. I have also learned about the valid concerns of consumers in the disability services world, and how sometimes they have realistic expectations, but sometimes, their bar can idealistic but realistically unobtainable.
The biggest lesson is not news to me, but instead reinforces everything I have learned so far: the consumer with disabilities is always the one whose concerns matter most. Not the caretakers. Not the doctors. Not the educators. Not the businessmen and people on the street who interact on a random basis with the person with disabilities. This does not just apply to the consumer with disabilities, but to the entire disabled world. The big lesson behind independent living is that people with disabilities should be able to determine their own destinies.
Second Progress Report
After working for Todd Vaarwerk in advocacy and public policy for almost 2 years, I have finally gotten a paid job at Western New York Independent Living (WNYIL). I am working in the Family Reimbursement Program (FRP) under the supervision of Lynnette Torgalski, the director of that program. Also assisting Lynnette is our coworker, Niema Morgan. I am using this job to fulfill my internship requirements, with Todd Vaarwerk still serving as the liaison for the internship.
The Family Reimbursement Program is a very unique division of WNYIL. We in the FRP process requests from family members of developmentally disabled individuals, almost all children. These requests are for funds to support the developmentally disabled individuals in living a better, more dignified lifestyle. The people who request funds often have very little money or other resources, and struggle with taking care of developmentally disabled family members without assistance. That is where we come in. Family members of developmentally disabled individuals apply for financial aid from our program.
What is this aid used for? It is used for everything under the sun, including hygiene supplies, utilities, transportation, medical supplies, special dietary foods, replacement items, items related to therapy, and even recreation that improves and stimulates people with developmental disabilities. Forms of recreation we support include but are not limited to dance therapy, swimming, horseback riding, and even various forms of camp.
People apply for aid from our program by entering very thorough amounts of paperwork. Their applications are then taken to a committee including developmentally disabled individuals, parents, care providers, and more. The committee then decides on whether or not to approve the funds for the developmentally disabled individual. The amount of funds that a person can apply for is capped at $700, although in cases of extreme emergency, we can approve more. I will discuss more details about the job, such as how we file, in next month’s report.
On one of my very first days of work, I was asked to sort vast amounts of information into various files for people seeking benefits from the Family Reimbursement Program. I immediately started noticing many trends amongst our applicants. One of the most startling to me as a 28-year-old autistic individual is how widespread the diagnosis is today. When I was growing up as an autistic person 20 years ago, I was the first and only one with the diagnosis in almost all circles in which I traveled. Now it seems like everyone and their cousin has an autism diagnosis. Yes, this is an exaggeration, but still, it is worth noting. I was alone growing up with an unfamiliar diagnosis, and there were not many resources to help us. Now there are plenty.
This brings me to my second realization. People today often take it for granted how lucky they are to have multiple resources that support them and their families. The Family Reimbursement Program does not just pay for outright necessary essentials, but also pays for social opportunities and recreational opportunities for the developmentally disabled. Families with developmentally disabled individuals are extremely lucky to have a resource like the Family Reimbursement Program.This blog posting is both the personal opinion of Alec Frazier, and the professional policy of his advocacy firm, Autistic Reality. If you oppose it, please screen grab it! We are very proud of this opinion!