The National Paralysis Resource Center’s College Transition Program offers students living with paralysis free consultations with Accessible College to support their pursuit of higher education. We spoke with Tulkin about her mission to make sure all students are prepared to achieve their goals.
What’s your message to students with disabilities?
This is doable. College is achievable. If you have the right accommodations and support in place, you can be successful. You can have the same opportunities that any other student has. You just need to have the right tools in your toolbox before you go.
Can you describe your process for families?
Students with disabilities approach the college process like any student. They’re looking at majors, at campus culture, they are thinking about the same things as everyone else – and then they have an added layer of having to navigate a disability.
I begin by talking to my students about what their individual experience is and what their functional limitations might be. I ask what accommodations they are currently receiving and use that as launching point to begin to think about how that will translate to a college setting. ‘Do you use assistive tech for writing papers? How do you get to school every day? Who makes your lunch? Do you take medicine and who manages that?’
My goal is to empower students so that they have the right tools to be successful in college. Essentially, this is setting them up for life. The accommodations process in the workplace is going to be very similar because, like college, it’s under the Americans with Disabilities Act (ADA.) The more comfortable a student is in developing self-advocacy skills, the better off they are going to be in life.
What are some of the challenges students with paralysis encounter on campus?
The obvious piece is around physical accessibility on campus. They all have to be ADA compliant, but then there is also the issue of usability. Although something may be technically compliant, it may not be usable to the person who needs it.
What’s an example of this that a student might not anticipate ahead of time?
Getting into the dorms or dining halls or the library on a lot of campuses requires swipe cards, but some people don’t have the hand dexterity to use them. So, if that’s a challenge for one my students, I’ll suggest they ask the school’s Disability Support Office if using key fobs or sensors is a workaround that is possible. By talking to students about their individual needs, I can help flag these kinds of problems in advance and introduce them to solutions.
Do you communicate with colleges on behalf of students?
No. Because of FERPA, (the Family Educational Rights and Privacy Act, which protects the privacy of student education records) the student has to make requests and engage with the Disability Support Office.
Self-advocacy is a key component of the work I do. I arm students with the language to ask for what they need. Things are not always going to work out perfectly, so it’s really important that students have the skills to be able to speak up and advocate when that happens.
Are there any topics that are difficult for students to think about?
We talk a lot, and in a very detailed way, about personal care. One of the biggest challenges I think students with paralysis have is around hiring and managing personal care attendants. And just starting to think about body autonomy and talk about what they want and don’t want. For lots of students, to talk about shifting to a different person bathing you is a complicated conversation.
What resources have you helped families find that they did not know were available?
There is funding and scholarships that are only open to students with spinal cord injuries. Sometimes people don’t understand that they can request funds and supports through state vocational rehabilitation programs. Every state is different, every student’s situation is different. You never know what you’re going to get, but it’s always worth exploring. Social Security Insurance and Medicaid are also ways people pay for personal care attendants.
What’s your advice to families?
Start this process early. The earlier families begin thinking about this, the easier it is. If students come to me during the search phase, they can have a more comprehensive process and find a school that’s a good fit for them holistically.
For more information about the College Transition Program, or to receive “Navigating and Transitioning to College with Paralysis," a comprehensive guide to help young adults with mobility impairments plan for college written by Tulkin, please contact the NPRC Information Specialist team at www.ChristopherReeve.org/Ask or call 800-539-7309.