REPRINTED FROM EXCEPTIONAL PARENT MARCH, 2012
By Anastasia Somoza
Several years after EP Magazine featured the Somozas as its cover story, Anastasia Somoza has graduated from Georgetown University and is now headed for the prestigious London School of Economics. But not before sharing a significant experience with others that just may make a big difference in their educational lives.
My name is Anastasia Somoza and I am 28 years old and live in New York City. Since graduating from Georgetown University in 2007, like many college graduates these days, I have been unable to get a job. I have just received a full scholarship to pursue my Masters degree in Human Rights at the London School of Economics and Political Science. I have cerebral palsy, spastic quadriplegia, and use a motorized wheelchair to get around. I depend 24/7 on an aide who gets me up in the morning, and helps me out during the day.
In New York City, Medicaid pays for my aide. When I went to Georgetown University, through a Medicaid waiver, they paid my aide to help me while I was in school. Throughout my life, my mother has had to fight for me and my twin sister Alba, who is also significantly disabled with cerebral palsy, to get an education. Most of the fighting was with the public schools so we could attend regular classes and not be relegated to special education classes, which at that time were just warehousing students with special needs.
Since last year my mother and I have worked on legislation that would allow students who are accepted to an institution of higher learning, to be able to take their aide with them while in school.
We worked closely with the U.S. Department of Health and Human Services to try to get a waiver, which would allow me to take my aide with me to London. Literally two days before our flight to London, we got a call denying me the waiver. It is so incredibly frustrating. Medicaid will pay for my aide 24/7 if I sit at home all day in New York watching television, but not if I try to improve my chances of getting a job by getting a masters degree. This is what we hope to change in the future with legislation for students facing the same issues as myself.
We decided to go anyway, and see if we could work something out on the London end.
After two weeks there, we could not come up with a funding solution for my aide, and decided to come home. We asked my school if I could defer until next year. The day before coming back to New York, the son of a friend of my mother’s in London offered us some money to pay a stipend (not a salary) to a volunteer who agreed to travel from New York City and work with me until the end of this term. The course at LSE lasts for two years, but at least this extraordinarily generous offer from these friends allowed me to enroll in classes. The money would be sufficient to keep me in school for the term, which was relatively short, from Oct.1st to December 10th. And, in the meantime, my family and I could start the fundraising. The school agreed to pay my room and academic fees.
The aide arrived in London, while my mom and sister returned to the United States. I started my classes at the LSE. We had literally had an 11th hour reprieve, much to everyone’s relief. The first few days were a whirlwind of meeting professors, making friends, and tackling the reading assignments. I also had to check out the neighborhood for supermarkets, accessible coffee shops, how to use the underground and bus system which was time-consuming but great fun.
Sadly, the aide assisting me in London became abusive, and I suspected she was using drugs. This strange behavior started not long after my family left. The situation became dangerous, and she kept me in my room for two days, taking away my phone and computer. The campus dorm room was not accessible, and I literally could not open the door of my room, or the three doors that led to the lobby. Through a friend, I was able to get in touch with my mother in New York, and she flew over the next day. The aide was escorted off campus.
We tried to meet with some of the senior staff at the LSE but it took some time and I realized I would probably not be able to find new people or funding quickly enough in order to finish my term at school. The school said they could not pay for an extra room for back up aides, and so I decided to defer for a year to try to fund raise the money to pay for my aides. British law only allows their workers to do a maximum of 35 hours a week, and I would have needed four people to alternate working with me, and they need to have a room or rooms in the university—all at my expense, plus five weeks paid holidays.
I communicated this to the wonderful wife of former Prime Minister Tony Blair who had been instrumental in encouraging me to apply to the LSE. I met Mrs. Cherie Blair three years ago, while I was volunteering at the Clinton Global Initiative. She wanted to know the whole story, so I told her. She set up a meeting for the next day, in my dorm, with the head of the school. She came to the meeting with the senior policy analyst for SCOPE – the largest charity in England and the equivalent of our cerebral palsy associations. They were both appalled by the lack of accessibility of the “accessible accommodations” and pointed out all the risks to the school authorities.
Mrs. Blair led them on a tour from the lobby to my room, pointing out all the lack of access along the way. It was truly amazing how informed she was, and we later found out that she is a huge advocate for people with disabilities and a patron of SCOPE.
She said she and SCOPE would help the LSE comply with their obligations under the Equal Education Act, thereby improving ALL the accessible rooms at the school, and doing a complete accessibility evaluation of the entire campus.
While the whole series of events was quite daunting, I am determined to go back in September to take advantage of my scholarship and begin my studies in Human Rights. The students and faculty could not have been more supportive and, despite all the kinks I encountered, the LSE is a great school and I cannot wait to go back. I also think that my bad experience there did actually serve a greater good. I do believe that everyone at LSE is far more cognizant of the obstacles facing students with disabilities, and they are going to rectify many of the existing barriers. I also think that sometimes, it takes a bad experience to encourage positive change, and if that comes to fruition, it would more than make up for those difficult days.
I think the big challenge now is coming up with the funding to pay for my aides in London. We have already raised $18,000 so far, but it is far short of the approximately $40,000 per year that is needed to pay the girls who will work with me. I have a site on Indiegogo, the website for individual causes, and I have some friends who have promised to help me with the fundraising. Here is the link to the site: http://www.indiegogo.com/Help-me-pursue-a-MSc-in-Human-Rights-at-the-London-School-of-Economics-Round-2
I will not give up, though, and will keep working hard towards getting that masters in Human Rights. Then, I can hopefully find a job in that field, and try to make a difference in the lives of other people, those with and without disabilities. •
The Changes So Far
By Vanessa B. Ira
Mary Somoza has been her children’s advocate all their lives. She believes that spreading the word on Anastasia’s fight relating to her recent experience at LSE is very important. She said, “First of all, we need legislation to address this. I am working on it with our state legislature, but also to let our families know the importance of education. Why should our children be limited to doing a Masters in the United States? Should they not be able to have the experience of living in another country, getting a different world view? If you have private insurance here in the US, they will cover your son or daughter while they are enrolled in college, where ever that college is. But if you have Medicaid, the only insurance our kids can get, then you are obliged to stay in your home state— even if you are accepted to Harvard.”
Here is the latest on the “LSE saga.” Mrs. Somoza informed EP that as of early 2012, her daughter is interning three days a week at Human Rights Watch. Anastasia recently met with Judy Huemann, who came to visit the staff at her office. Judy was the U.S. Assistant Secretary of Special Education and Rehabilitation Services for eight years under the Clinton Administration. She now works for Hillary Clinton at the State Department that gives funding to Human Rights Watch. Mrs. Somoza became very friendly with Ms. Huemann during their big battle in 1993 to 1994 with the New York City Board of Education, along with the Clinton encounters. She told Anastasia that it may be possible for them to get some funding from the State Education Department, as she knows that during her tenure there, they funded students with disabilities who studied abroad—and that there is no regulation stating they cannot fund a student doing all her course of study abroad.
Good things seem to be happening as well in London. Due to Cherie Blair’s intervention and Anastasia’s advocacy, the school is working on making it more accessible for next September, when she returns there. The university has been working on a guidance document for students who require personal assistants accompanying them for their studies. They have been actively seeking Anastasia’s input. They have also cleared the costs incurred last term, when Anastasia first came to LSE. As such, she will return in September with a full scholarship and living allowance for the two years study at LSE. Some of the changes in accommodation and living arrangements for Anastasia that are being discussed at this time include:
• Automatic doors from the Hall entrance to the ground floor room where Anastasia will reside.
• This may not be available until late September at the earliest, due to work being done, however should be ready by the time the term begins in October.
• Curtains will be sorted so that Anastasia can close them.
• She will be issued with a personal alarm/emergency contact.
• The shower will be made more accessible.
• She will be issued a list of key contacts, with early meetings to be set up with residence staff, and explore giving Anastasia a single-named contact to liaise with in the hall.
One of Anastasia’s professors has also expressed concerns about her welfare while she is on campus, particularly about access from buildings after normal study hours. To this end, he has requested that she meet academic and support staff at the Centre in induction week to discuss any relevant issues related to course organization, timetabling, options choices, advice and feedback sessions.