By Yidan Sun
BU News Service
While studying television and production at BU, Natalie Lomske makes videos on the available resources and helpful information for people with disabilities and publishes them on her Youtube channel, such as the wheelchair accessible apartment search in Boston.
“I want to make sure that individuals with disabilities are aware of the resources available, so they can live a more independent life,” said Lomske.
Born with muscular dystrophy, Lomske is able to go to classes with her personal care assistant. In Massachusetts, the government provides funding for the Personal Care Assistant (PCA) program for people with disabilities like Lomske through MassHealth, a state-funded program. Depending on the disabilities and natural resources, one can receive up to 50 hours of PCAs per week. However, the hours MassHealth offers are far from what Natalie needs.
“Recently I’ve had to fight for more hours. I have the PCA for one day so I can attend school here,” said Natalie.
“They provide you with just a certain amount of hours a day, and if you need more, you’ll have to fight for it,” said Natalie. “They usually give you the minimum hours, as little as two a day.”
Natalie said it makes it harder for her to find a PCA.
“Who would want to work on a two-hour shift?” asked Natalie.
From Natalie’s experience, to argue with the government about the PCA service is frustrating.
“It’s more to their interpretation of what you need, not what you say you need,” said Natalie. “They say for you to go to class, it’ll take you 15 minutes, even if you have to drive like 30 minutes. To me, to get on the jacket would take me five minutes, but they calculated it down.”
“They give you the bare minimum, but they don’t think about the practicality.”
Another student at BU, Isabel Allen, seems luckier because she has her personal care assistant all day.
“Since I came to BU as a freshman, I started to hire 24-hour PCAs, but it’s not really affordable,” said Allen.
Allen receives funds from both MassHealth and the Massachusetts Rehabilitation Commission, also a state-funded program which provides service for people with disabilities, however, it’s still not enough for her daily needs. Her family pays for the rest of the day.
“The problem with their process is that they don’t give time or money to just-incase-situations,” said Allen. “For me, when I enter my dorm, I need someone there just in case that I need help, but they don’t think it necessary. That’s why I have to pay for 24 hour assistance.”
Nandini Choudhury is a research assistant at the Center for Innovation in Social Work and Health (CISWH), Boston University. From her point of view, funding plays an important role in helping students with disabilities getting enough support to their needs.
“The battle here is getting support from the school, from BU itself, to maybe fund programs as PCA. This really shouldn’t be a problem. I shouldn’t fight for the care that I need to get through a day,” said Choudhury.
The wage for a personal care assistant is 15 dollars per hour. However, sometimes the PCA works overtime without getting paid.
“You never know what a person with
Nandini said this situation can affect the quality of the service a student receives.
“One of the reasons why students didn’t get support they need is that PCA won’t work unless overtime is paid, which is awful for the student and awful for the PCA. They either do a rush job or not properly take care of the students.”
According to MassHealth, the employer is fully in charge of finding their PCA and scheduling the work. Nandini thinks that BU should do a better job by providing more advertising information on student bulletin, Facebook pages, student health, community spaces about the PCA program MassHealth.
People with disabilities involved in the PCA Program grew from 5000 to 35000 since the year 2000, according to MassHealth. Starting from this year, MassHealth holds public listening session every 6 weeks. They stated on the last session on Feb. 28t that they were trying to get feedback and adjust to individual needs through such events.