United Spinal Association Inc.
United Spinal Association Inc.
04/09/2024 | News release | Distributed by Public on 04/09/2024 21:39
Care Support for College Students
The transition to college from high school is both an exciting and intimidating time for students. Students with disabilities face yet another challenge of finding new care support at the college they are attending.
The Care Support Working Group members shared their experiences and resources to help make this transition a little bit easier.
The Rights of College Students with Disabilities
Students with disabilities have the same rights as students without disabilities. The Rehabilitation Act of 1973and the Americans with Disabilities Amendment Act of 2008are two pieces of legislation that protect college students with disabilities.
The Americans with Disabilities Actstates that discrimination is prohibited in a variety of specific areas including transportation services, schools, communications, public accommodations, and access to local and state government services or programs.
The Rehabilitation Act of 1973prohibits discrimination to a person with a disability in any program that receives $2500 or more of federal funding per year. It requires an institution to be prepared to make reasonable academic accommodations to allow students with disabilities full participation in the same programs available to students without disabilities.
Most public and private universities receive federal funding, so they are required to follow the mandates of these laws.
If you feel like your rights as a student with a disability have been violated contact the college's disability services or an academic advisor help you file a complaint. You can also contact federal agencies including the U.S. Department of Education's Office of Civil Rightsand the Department of Justice.
Top Tier Resource: Accessible College
Annie Tulkin founded Accessible Collegeto help empower students with disabilities and those who support them to work together to create positive educational experiences and ensure college success.
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Here are some of her key takeaways:
- The Americans with Disabilities Act and Section 504 of the Rehabilitation Act of 1973 do not require colleges to provide PCA services as an accommodation.
- College students who need care support for personal care will have to plan ahead and hire their own PCAs.
- The University of Illinoisand Wright Stateare the only colleges that offer PCA services for students.
- Connect with the Disability Support Office (DSO) at your college because they are responsible for helping with the accommodation process for students with disabilities.
- Find care support from the student population through the nursing, pre-med, social work, occupational therapy or physical therapy programs. Students in these programs, at times, are required to have hands-on experience working with people in the disability community.
- Use a home health agency or job search platform such as Indeed.
- Meet with the college DSO because there may be policies for PCAs to live on campus or to have access to the dorms.
- If you have been accepted to multiple colleges, it can help to make a spreadsheet to compare the options at each on campus accessibility, accommodations, financial aid, level of support, ability to find and hire personal care assistants and access to healthcare providers.
- It is recommended to start your college research early to gather as much information as possible before your senior year in high school.
- PLAN AHEAD!
"Take time to think through your needs holistically, writing out all of the areas where you may need support in a 24-hour cycle. You can use this information to support requests for funding a PCA and explaining their role. Additionally, this can help empower you to be able to better self-advocate and articulate your needs to the DSO," says Annie Tulkin.
Annie also offers an online coursewhich looks at transitions, holistic support, independent living, personalized college planning and strategies for engaging with disability services.
Paying for Care Support
Depending on the state you live in, level of injury and financial status, insurance or Medicaid may pay for care support. Here are additional resources to consider:
- Apply for Supplemental Security Income (SSI), and/or (SSDI)right at 18, because it can take 3-6 months for the Social Security Administration (SSA), to decide on your eligibility
- Apply for Medicaid, through the Department of Social Services (DSS) once you turn 18.
- Submit your FAFSAbefore the college's deadlines.
- Apply for college scholarships and grants
- Apply for an ABLE account or Vocational Rehabilitation assistance
"If a student has an ABLEaccount, they can use it to pay for attendant care because it is a qualified disability expense. It is available to students who have a disability that occurs before they are 26," says Care Support Working Group member, Lisa Cooley.
"The Department of Vocational Rehabilitationpays for attendant care services for college students if they are going to school to earn a degree." Vocational rehabilitation programs generally work to help people with disabilities gain employment but can include postsecondary educational financial help.
How Jackson Found Care
Jackson MacTaggart, a member of United Spinal Association of Pittsburgh, and graduate student at the University of Michigan had success at finding care support at Pennsylvania State University.
When Jackson attempted to obtain PCA services through his insurance, he found out that because his needs were not major and he was relatively independent, the home health agencies in his area could not cover his care. Luckily, through a friend he was connected with a pre-OT student at the university who was willing to work with him.
Jackson was initially paying out of pocket for his PCA. Not long after they started working together, the home health agency said that if he was able to recommend somebody that they could hire, he could have his insurance pay for the services he was receiving. After his PCA graduated, he was able to find another student to help him who had additional connections that led to more care support.
"For my senior year, I was able to find somebody to work with me by engaging with my student disability resource office and my university's nursing program." Jackson also learned that many healthcare programs require the students to complete working hours in their field.
"Working in home health also fulfills this requirement, and many of these students are working for this type of work within their communities because of the direct hands-on experience this work generates.
Become Your Own Manager
Prior to college, many students with a disability receive assistance and care from their family. When the transitioning to college students must learn how self-advocate and how to find, hire and manage a PCA.
The Care Support Working Group created a Best Tips and Strategies for Finding and Hiring PCAsresource describing various ways to find potential PCAs.
The U.S. Department of Labor also offers a toolkitto help youth take over managing of their own care. It includes checklists job descriptions, interview questions, personal reference questions, contracts, etc.
Most Accessible Colleges
Wheels on Campus - A Guide to Wheelchair-Friendly Higher Educationis a comprehensive guide that was researched and produced by New Mobility Magazine in collaboration with Annie Tulkin.
Hundreds of colleges across the country were surveyed. More than 80 students with disabilities identified the top 20 colleges that offer the best wheelchair-friendly campuses and cultures.
United Spinal Associations Grassroots Advocacy Manager, Annie Streit and powerchair user was not surprised to see Ball State Universityon the top 20 list. "When I decided to go back to Ball State to earn my teaching degree, I was not sure what to expect, even though I also attended and earned a degree from there before my SCI," she says.
"I had a great care support system set up through my home health agency at the time. They would meet me on campus in between classes to help with anything that I needed… whether that was grabbing a bite to eat, helping with any personal care needs or getting set up to study."
College is meant to be different and challenging, but do not let this discourage you, but rather encourage you to seek out support. Be prepared to advocate for yourself and find a community with other students with disabilities that can help you on your journey.
Additional Resources
Guide to Disability Rights Laws
How to File a Discrimination Complaint with the Office for Civil Rights
Resources & Support for College Students with Disabilities
State Vocational Rehabilitation Agencies
A Wheelchair User's Guide to Preparing for College
How to Secure Housing and Manage PCA Services at College
Wheels on Campus: A Guide to Wheelchair-Friendly Higher Education
Best Tips and Strategies for Finding and Hiring PCAs
What We Want Our Caregivers to Know
Collaborate with advocates from across the United States to improve care support services for people with disabilities. Join our United Spinal Association Care Support Working Group.