Students with Disabilities Face Financial Aid Barriers

Monday, September 15, 2003

College and Graduate Students Share Their Stories and Policy Recommendations

September 15, 2003

By Rebecca Moore

for the Youth Advisory Committee of the National Council on Disability

Editors: Sarah Tom and Alexandria A. Fearn

Youth Advisory Committee Members:

Isaac Huff, Chair, Orange, NJ

Denna Lambert, Vice Chair, Little Rock, AR

Rebecca Hare, Secretary, Burlingame, CA

Alexandria A. Fearn, Oakland, CA

Renaldo Hemphill, Fayetteville, AR

Christina Mills, Oceanside, CA

Rebecca C. Moore, Hyde Park, NY

Sara B. Riggio, Glen Ellyn, IL

Sarah Tom, Berkeley, CA

Betsy Valnes, Pierre, SD

Victor Pineda, Berkeley, CA

Executive Summary

Does disability limit college and graduate students’ ability to access financial aid?

Background: Access to higher education is key to the independence of students with disabilities. Prior to this student inquiry, students with disabilities had not been asked what role their disability played in their ability to pay for college and graduate school. Congress is currently evaluating the 2004 reauthorization of the Higher Education Act, the law that funds the largest percentage of financial aid for higher education. For this reauthorization to accurately reflect the needs of students with disabilities, it is imperative that these same students have the opportunity to share their experiences with barriers in the financial aid process.

The Higher Education Act also funds programs that prepare students for higher education and improve college and graduate school infrastructure and endowments. It includes several provisions for the needs of students with disabilities, including a nondiscrimination clause, funds for student support services, increased student financial aid when disability-related expenses are significant, and discretion for financial aid officers to adjust aid packages according to special circumstances.

People with disabilities make up 19% of the nation’s population (US Census Bureau) and, as a group, have the highest unemployment rate of any minority group in the United States. It is in the best interest of this country that the next generation of young people with disabilities is competent and adequately prepared to enter the workforce rather than depending on Social Security and welfare benefits. As a baccalaureate degree has now become a prerequisite for gainful employment, it is now more important than ever that people with disabilities have access to higher education.

Objective: Our objective was to catalog the successes and obstacles in financing higher education based on narratives from students with disabilities and college financial aid officers. We sought to understand whether the Higher Education Act provides for the needs of students with disabilities.

Methods: Optional, guiding questions were presented to students with disabilities and higher education financial aid officers. Our committee of student volunteers publicized our questions through contact with colleges, universities, technical/vocational schools, independent living centers, vocational rehabilitation agencies, consumer groups, professional organizations and state governments nationwide. We received commentary between April 17, 2003 and July 30, 2003 from students and professionals, most of which was sent via e-mail.

Results: We received written narratives from 53 students, seven parents or siblings (responding on behalf of students), four college disability staff, four staff from nonprofit organizations, one transition planner, and two respondents whose role is unknown. We did not receive responses from college financial aid officers.

Conclusions drawn from students’ responses:

Students with disabilities offer unique insight about how the federal financial aid system can be improved to help them afford higher education. They describe key barriers that policy makers must address.

College and graduate students with disabilities use many sources of financial aid that often have conflicting eligibility requirements. The variation in these requirements and their interpretation creates barriers that limit students’ access to services, making it more difficult for them to achieve their educational and vocational goals. For example, receiving funds from vocational rehabilitation agencies or the social security administration may negatively affect students’ ability to secure financial aid from their schools or to participate in work-study and internships. Despite conflicting regulations and the availability of multiple programs and services, there is little benefits planning or communication between students’ rehabilitation counselors and their college disability services staff. Many students find it difficult to learn about their right to financial assistance and to navigate the interactions between their sources of support. Despite confusion over differing interpretations of their benefits and rights to assistance, most student respondents recommend participation in state vocational rehabilitation programs.

The disclosure of disability and related expenses does not lead to increased financial aid from colleges and universities. Students personally pay for disability-related accommodations and medical needs when they are not funded by educational, medical or social agencies. No students responding to our inquiry indicated awareness of their right to receive increased student financial aid because of their out-of-pocket, disability-related expenses.

Disability may prevent students from accessing financial aid for college and graduate school, because of reduced course loads, extended number of semesters before the completion of a degree, difficulty with test taking and scholarship essay writing, an inability to participate in college work-study programs due to the nature of a disability, and discrimination against graduate school assistants with disabilities.

Students with disabilities report that they are concerned about taking out student loans, primarily because of concerns about their future employment and the fact that it is often impossible to temporarily defer student loan repayments because of disability.

Students with disabilities often feel unwelcome on college campuses because of financial aid officers’ responses to their need for financial assistance. In addition, many feel that vocational rehabilitation counselors discourage them from pursuing a baccalaureate or graduate degree, and emphasize vocational training instead. Students then are left to worry about how to fund their postsecondary education on their own.

Policy Recommendations: The role of the Youth Advisory Committee is to advise the National Council on Disability. We hope NCD will endorse the following recommendations prepared by the YAC:

We recommend that the federal government update the Higher Education Act to make federal educational financial aid more accessible to postsecondary students with disabilities.
We recommend funding new transition planning programs.
We recommend that college and university campuses and resources be made more accessible to persons with disabilities through special consideration for grant applicants who focus on disability accessibility.
We recommend coordinating the regulations affecting students receiving Supplemental Security Income (SSI), Medicaid, Medicare, state vocational rehabilitation services, and federal student aid, so that their rules and regulations do not prevent students from making decisions that support independence. The interpretation of rules is particularly important when students require assistance from multiple programs, and find that receiving assistance from one agency may mean not being allowed to work on goals set with a second agency. Students must be able to participate in internship and work-study programs, and to save for education, career or disability-related needs, without limiting their eligibility for the financial and vocational programs that help them achieve their goals.
We recommend that future studies examine the relationships between the sources of financial, medical, educational and rehabilitation support received by college and graduate students with disabilities, to identify the barriers that prevent these programs from achieving their objectives.
We recommend that future studies emphasize gathering data directly from students with disabilities, including adolescents, young adults, and adult students returning to college and graduate school. It is important for students to speak for themselves, not to depend entirely on gathering data from their parents.

For more comprehensive policy recommendations please see the body of this report.

Recommendations for Future Research:

Our findings suggest that students with disabilities face substantial difficulties and pressures when funding their higher education. The qualitative data presented in this report illustrates the wealth of information available from students with disabilities and the importance of conducting more formal investigations in this area.

The Youth Advisory Committee counsels NCD to encourage increased research of disability and higher education. We suggest that NCD recommend that future research:

Obtain information directly from college and graduate students with disabilities, preferably in a longitudinal study with a nationally representative population.
Identify the best way to obtain data about individual students’ (or families’) disability-related expenses so that they may be factors in determining the Cost of Attendance, Expected Family Contribution, and Pell Grant amount.
Describe those persons with disabilities who are not participating in higher education and identify the reasons for the interruption or cessation of their education.
Comprehensively describe the financial concerns of students with disabilities, including the total cost of their education, student loan burdens, their ability to save for college, and the pattern of interaction between vocational rehabilitation (VR) and Supplemental Security Income (SSI) support and postsecondary financial aid.
Measure relationships between postsecondary financial aid and employment outcomes. Do people with disabilities take jobs they are not satisfied with because they need to pay off loans or because a counselor required them to choose a specific path of study and career? Are some people with disabilities completely forced out of college and into entry-level jobs because they cannot afford college?
Evaluate the degree to which knowledge, funding and/or regulations prevent higher education financial aid administrators from providing students with disabilities with the guidance and financial support necessary for success.
Describe differing regulations and quantify levels of service and funding at state vocational rehabilitation agencies and at postsecondary campus disability services offices nationwide.
Develop and test transition planning curricula for high school and college programs based on the findings from the studies above (findings that specify the college, rehabilitation, and workplace systems students must be prepared for).
Compare the educational loan burdens of students with and without disabilities.
Describe the variation in loan deferment or default options from state to state (i.e. must permanent medical disability be declared instead of a temporary loan deferment?).
Evaluate the adequacy of the workplace accommodations that universities provide to their work-study students or graduate assistants.
Examine the accessibility of differing college majors and graduate school programs to students with disabilities, particularly programs preparing K-12 educators.
Examine college, university and graduate school compliance with the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act, and identify the accommodations and supports provided.

Introduction

Background: Does disability limit students’ ability to pay for college and graduate school? What role do college financial aid programs and other financial benefits play in students’ transition to independence and adulthood? These questions are significant because higher education is key to the independence of students with disabilities. Prior to this student inquiry undertaken by the Youth Advisory Committee of the National Council on Disability (NCD), students with disabilities were not asked whether disability played a role in their ability to pay for college.

Congress is currently evaluating the 2004 reauthorization of the Higher Education Act, the law that funds the largest percentage of financial aid for higher education. For this reauthorization to accurately reflect the needs of students with disabilities, it is imperative that students with disabilities have the opportunity to share their experiences with barriers in the financial aid process.

The Higher Education Act of 1965 provides funding and direction for many programs that prepare students for postsecondary education and support them during college and graduate school. Some of these programs are:

• College education programs for future K-12 teachers

• Professional development and support for teachers

• University infrastructure and library improvements

• Federal student loans

• Pell Grants

• Campus Work-Study Programs

• Academic Achievement Incentive Scholarships

• Early outreach and student service programs designed to increase the representation and success of disadvantaged students in higher education

• Student support services

• Educational Opportunity Centers

• Graduate Schools

• Colleges and universities that historically serve minority populations

• Research to improve the instruction of college students with disabilities

• Learning Anytime, Anywhere Partnerships (Distance Learning)

What are the Higher Education Act’s requirements and provisions for serving students with disabilities?

It is helpful to begin by exploring what students with disabilities should expect to occur under The Higher Education Act. This context will help you evaluate students’ responses to the Youth Advisory Committee’s inquiry. According to The Higher Education Act college and graduate students with disabilities should expect:

Nondiscrimination: The Higher Education Act assigns the term “disability” the same meaning given this term under section 3(2) of the Americans with Disabilities Act of 1990 (see Higher Education Act Section 103). Section 111 states: Nothing in this Act shall be construed to limit the rights or responsibilities of any individual under the Americans With Disabilities Act of 1990, the Rehabilitation Act of 1973, or any other law.

Access to student support services: The section authorizing grants for student support services states that persons with disabilities should be a substantial part of the population receiving assistance (See Section 402D).

Increased Pell Grants when disability-related expenses are disclosed: The Higher Education Act stipulates that the amount of a student’s Pell Grant should be increased if they have dependent care expenses or disability expenses. The formula for increasing the amount of the grant is found in Section 401, part 3a.

Increased Cost of Attendance when disability-related expenses are disclosed: Calculating the Cost of Attendance is the first step in determining the amount of a student’s financial aid package. The Higher Education Act includes disability-related expenses as one component of this sum of a student’s expenses. It describes this component of the Cost of Attendance as follows: “for a student with a disability, an allowance (as determined by the institution) for those expenses related to the student’s disability, including special services, personal assistance, transportation, equipment, and supplies that are reasonably incurred and are not provided for by other assisting agencies” (See Sections 471-472).

Despite these two references to including disability-related expenses in calculating Pell Grants and the Cost of Attendance, the Free Application for Federal Student Aid (FAFSA) does not provide an option for students to disclose disability expenses. Our student committee is also unaware of any colleges that ask students for this information.

Discretion permitted to financial aid officers: The Higher Education Act follows its instructions for calculating the cost of attendance by clearly permitting financial aid officers to act to meet student’s needs. It states: “Nothing in this part shall be interpreted as limiting the authority of the financial aid administrator, on the basis of adequate documentation, to make adjustments on a case by case basis, to the cost of attendance or the value of the data items required to calculate the expected student or parent contribution (or both) to allow for treatment of an individual eligible applicant with special circumstances…. Special expenses may include tuition expenses at an elementary or secondary school, medical or dental expenses not covered by insurance, unusually high child care costs, recent unemployment of a family member, the number of parents enrolled at least half-time in a degree, certificate or other program leading to a recognized educational credential at an institution…or other changes in a family’s income, a family’s assets, or a student’s status” (Section 479A).

Funding for improved higher education for students with disabilities: The Higher Education act funds Demonstration Projects to Ensure Students with Disabilities Receive a Quality Higher Education. These provide 3-year grants for institutions to develop demonstration projects and professional development about teaching college students with disabilities (See section 761).

Students with Disabilities Speak:

College and Graduate Student Inquiry

Objective: Our primary objective was to learn about the successes and obstacles reported by college and graduate students paying for their higher education by collecting and analyzing their narratives. Our secondary objective was to learn about the disability-related knowledge of college financial aid officers, their familiarity with the Higher Education Act, and their assessment of what they are empowered to do to assist students with disabilities.

Methodology: Optional, guiding questions were presented to students with disabilities and university financial aid officers. Eight questions were prepared for students; 14 were presented for financial aid officers. Our committee of student volunteers publicized our questions for students between May and August 2003 by e-mail and postal mail to colleges, universities, technical/vocational schools, independent living centers, vocational rehabilitation agencies, consumer groups, and state governments nationwide. We publicized our questions for financial aid officers in July 2003 by e-mailing their professional organizations and e-mailing and telephoning a small sample of individual financial aid officers at schools.

Limitations: Our volunteers had several months in which to gather student feedback and prepare policy recommendations for Congress’ consideration of the Higher Education Act this autumn. There was not time to submit a formal questionnaire to the Office of Management and Budget for approval. Therefore, we were restricted to proposing optional, guiding questions to suggest topics respondents might address in their narratives. This prevented us from preparing a questionnaire that would have been more accessible to persons who find reading and writing difficult. The emphasis on qualitative data severely restricted our ability to measure demographic variables, such as whether a respondent attends a public or private university, the size of the school, and the person’s age. We also were limited by lack of funds, lack of staff time, and the volunteer status of our committee. The most significant impact of our limited resources was our inability to obtain feedback from college and graduate school financial aid officers. A second related limitation was that we heard almost solely from respondents using e-mail, so we conclude that we did not reach many people with disabilities who lack Internet access.

Responses Received: We received 67 responses by e-mail, two by facsimile, one through a forum post, and one by postal mail. Most respondents (53) were students or recent graduates with disabilities, though we also heard from family members, transition planners, and staff at nonprofit organizations. We did not receive responses from college and university financial aid officers. This is one of the limitations restricting the breadth of data reported.

Forty of 59 responses received from students or their parents identified the disabilities they experienced. Nine of these respondents reported that they had multiple disabilities. The most common disabilities reported were blindness or visual impairment, chronic illness, traumatic brain injury, deafness, cerebral palsy, or attention deficit hyperactivity disorder.

It is notable that we did not hear from many students with learning disabilities or developmental disabilities, or from individuals who wish to be in college but are unable to gain acceptance or to pay for school. There may be significant portions of the disability community whose viewpoints on higher education are not known simply because they rarely have access to it.

Key Findings from Students’ Responses

Finding 1: Disability disclosure does not lead to increased financial aid from colleges and universities, despite provisions in the Higher Education Act for increased financial aid officer discretion, Cost of Attendance, and Pell Grants in the case of significant disability-related expenses.

Twenty-five students (or their parents) responded to our question about whether they disclosed their disability to their financial aid office, and if so, whether this had an impact on their financial aid package. Only three of the respondents indicated that they did not disclose their disability to financial aid staff. One of these students explained that she kept her diagnosis confidential because of the fear that misconceptions about her disability, bi-polar disorder, could make life difficult for her on campus.

The 22 students who reported their disability to financial aid staff primarily reported that this had no obvious impact on their financial aid and/or that it led to upsetting conversations with financial aid officers. Nineteen respondents in this group felt that disclosing their disability did not affect their financial aid. Many of them expressed frustration that they asked for help and described disability-related barriers and expenses, but got no response.

Most students who felt that disability disclosure negatively affected their financial aid described receiving decreased aid after reporting their disability and vocational rehabilitation (VR) assistance to their school. For example: “Yes, my financial aid package was affected. VR assistance was considered to be a “scholarship” rather than necessary aid for additional costs such as technical assistance.” Other students who reported disability-related needs to their financial aid offices found that this negatively affected their aid. One student wrote: “My financial aid services decreased when I disclosed my disability. I had to take time off for a fracture and when I informed the financial aid office about my attendance status they stopped my financial aid.”

Three students reported that while the aid from their school was not affected by disclosing their disability, an unexpected side-effect of this disclosure was that their school required them to apply for funds from their state vocational rehabilitation program before the university financial aid officers would prepare a financial aid package. Delays in vocational rehabilitation paperwork were then of significant concern. Six students had negative feelings about their college’s response to the disclosure of their disability, even though providing that information did not appear to decrease their financial aid. The college’s responses made them feel very unwelcome. Some of their statements are included in the case studies in the table below.

Only one student felt that disclosing her disability might have benefited her, because she qualified for disability-related scholarships at her school.

The Response to the Disclosure of Disability Often Makes Students Feel Unwelcome:

“Last week I did speak with the financial aid office and Penn State’s policy is they don’t care about any disabilities, no special circumstances. Even though (my son) is living on his own, we as his parents can pay the bill.” ~ Parent of college student with traumatic brain injury

“Because my disability is “invisible”, I often have difficulty convincing student aid officers of my increased need. The only aid I have received has been in the form of increased unsubsidized Stafford Loans to the $10,000 annual limit.” ~ College student

“Although my family has applied for aid, I have not been given any aid whatsoever. I felt like they did not consider the numerous out-of-pocket expenses my family has incurred over the years because of my disability (speech therapy, psychologist, etc.)” ~ College student

“Quite a few of the schools I approached as a potential college freshman told me that there were no special circumstances considered in determining financial aid. They got disconcerted and very formal when disability was mentioned. The colleges seemed to have accepted me for admission because of my unusual disability-related leadership experiences, but were absolutely unwilling to adjust my financial aid package to assist me. One Ivy League women’s college even said I was too disabled for them, because I couldn’t do work-study while taking classes.” ~ College student with chronic illness

“I always wanted to be a teacher. I have Cerebral Palsy and use a wheelchair. (I was told in my third year of college that) ‘Disabled persons do not meet the image this college requires of its Education graduates.’ … No disabled Education students were graduated that year. I transferred to Rhode Island College and had to repeat a lot of material because they went at it a different way. (I switched to computer science), went through my graduation ceremony, and then was told I had one incomplete to finish. When I tried to do so, the professor claimed because he lost the paperwork he was giving me an ‘F.” I already had a job, so let it go.” ~ Graduate who is unemployed

“Many of the LD (Learning Disabled) students I have met end up being asked to lower their expectations and go to a 2 year college or technical school instead of a four year university. This is so sad because these students are gifted and learning disabled. … The person with hidden disabilities often suffers in silence and never gets the assistance they need to succeed and they fall through the cracks and end up on the welfare rolls or become inmates and still supported by the state. The money spent early on in intervention has a big payoff. Neglect leads to many social ills and added costs significantly higher than what it would cost to provide appropriate accommodations and support in the formative years.” ~ Transition planning professional

Finding 2: Disability may prevent some students from accessing financial aid for college and graduate school.

Students wrote to us about a number of concerns that can affect their ability to qualify for college and graduate school financial aid. They included difficulty with the tests and essays required for meeting scholarship criteria, limited ability to attend school full-time because of the impact of disability, and difficulty working at a job in order to pay for school. We have separated our response counts for this section according to the specific concerns that writers identified.

Exam and essay barriers: One parent described the challenges her high school daughter faced in applying for college admission and scholarships because of her learning disabilities. Despite getting high grades in her courses, she was unable to get high enough SAT scores to meet the National Collegiate Athletic Association’s standards. She also struggled with the essays required for most scholarship applications. Some college athletic departments shied away from her after learning of her disability, despite her good grades and strong athletic skills.

Studying takes extra time for many students with disabilities: Although we did not specifically inquire about this challenge, two students and one college staff member discussed it in their responses. This is significant because spending extra time on studying may mean taking a reduced course load and needing extra semesters to finish school, and may make it very difficult for students to work while they are taking classes. Please see the case studies on the right.

Can students make satisfactory academic progress in order to qualify for aid? Many universities have minimum progress requirements, which require a minimum number of units or courses to be taken per year. The penalty for not taking the minimum number of units is typically academic probation. As many students with disabilities are unable to take a full course load, these students are placed on academic probation simply due to disability and may also have financial aid eligibility problems because they do not have fulltime status.

Only seven students answered our question about whether they can meet their school’s requirements for academic progress. Six – two graduate students, two college graduates, one college student, and an adult with a graduate degree – reported that they could meet their school’s requirements. . The seventh respondent to this question reported that she would not be able to meet the requirements at most colleges, but that her distance learning school had very flexible criteria that permitted her to take a low course load and take semesters off when needed.

Requiring Extra Time to Complete Studies

“With my disabilities (dyslexia) … it usually takes me twice as long to complete an assignment and tests, which is a significant amount of time. This time is just the time spent executing the assignments and does not account for the time spent going to school early or staying after for help in a particular subject that I have had a difficult time understanding.” ~ College freshman with dyslexia

“As someone who is hearing impaired I require more time to complete my work than the average student. For example: Teachers refuse to use closed captions on movies, therefore, I must make the extra time to go to the library and watch the movie on my own with the captions. Or, if I can find it, rent it from the local video store because the video does not have closed captions installed. … Other reasons why it takes more time for me to complete work is having to meet with people. Sometimes I do not understand what the lecture was about and must meet the teacher, I must meet with the note takers and proofreaders. (My writing is bad, due to the inability to hear proper English.) All of this extra time takes away my chance to have a job and to provide for myself financially.” ~ College student

A college support services staff person writes: “Here at UNM we consider 9 hours “full time” for a student with a documented disability as opposed to the standard 12 credits/hours. This would be wonderful if the major financial aid institutions would do the same.”

We asked students if taking a reduced course load because of their disability could mean running out of Pell Grant eligibility before they finish school, because of taking additional semesters to complete their degree. Eight students responded. Two were unsure what would happen if they needed extra time to complete school; one expected to need many additional semesters of part-time study; one could not drop below 12 credits per semester or he would lose his scholarship; and one was in graduate school and ineligible for Pell Grants. Two said they would run out of eligibility if they needed additional semesters to study. The final student advised others that VR funds should kick in when they are no longer eligible for Pell Grants.

Are students able to attend school half- or full-time in order to qualify for financial aid?Seventeen students responded to this question. Thirteen of them reported that they attended school full-time. Of those, three also mentioned that they also worked at a job during the school semester; five stated that they could not handle working during the semester; one found logistical challenges to working during the term; and three mentioned only that they attended class full-time (no indication about working).

Four students reported difficulty keeping up with the typical college academic pace. Two of them reported that they could attend school at a ½ to ¾ time level, and that they must do so to maintain their financial aid. One wrote: “Physically, I know that my body won’t let me keep up a faster pace and I feel frustrated that college will take me forever to finish.” The third student in this group had to carefully schedule light course loads and avoid taking more than one major reading/composition class per semester. The fourth student in this group reports that she is typically unable to attend more than 1-2 classes per term, and must take many terms off due to illness.

Several students reported taking time off from school because of chronic illness, fractured limbs, or needing time to heal from brain injuries.

Is it difficult for students to attend school at least half time?

“In the majority of the time since I graduated from high school (1995) I have not been able to attend school half-time or full-time. I usually end up taking 1-2 courses per semester, then have big flare-ups in my chronic illness and take a number of semesters off, and then return to take a few more classes. There was one term when I was able to take 3 classes on campus, but that was highly unusual, and I did absolutely nothing other than study and sleep all term. I couldn’t exercise, take care of errands, groceries, cooking, or other tasks, because it took all I had to sit up and be that active.” ~ Student with chronic illness

“I am physically and mentally able to attend school more than half the time, although I do have problems attending classes sometimes due to disability and medicine related fatigue. As per academic performance, I have maintained a GPA that is above 3.3, but currently I have incompletes in 7 courses, preventing me from getting the credits I need to become a junior, as well as putting me in danger of losing my scholarship.” ~ Student who has bi-polar disorder and obsessive-compulsive disorder

Are students physically able to take advantage of college work-study when it is offered in their financial aid package? Eighteen students responded to this question. Eight were able to work on- or off-campus during the school term. Three felt that they were able to do so, but either were not offered this opportunity in their financial aid package or were not permitted to use it because of vocational rehabilitation regulations.

Seven students were unable to access the funds allocated in the work-study portion of their financial aid package because their disability prevented from having a job while they were in school. Of these seven, two students were unable to handle working during the semester, but chose to work during summer breaks. One worked during the semester, but chose to do so at jobs that she found more accessible and career-related than on-campus employment. An additional student writes that he attempted work-study “for awhile then it became too stressful to attend school and work. Make sure it doesn’t count against social security in the future.” Finally, two respondents were not able to handle working at a job at all because of extremely low stamina, and one found it impossible to find an employer who would accommodate her needs as a person with carpel tunnel syndrome.

Finding 3: Students use many sources of financial aid, some of which prevent them from accessing the services they desire.

Forty-one students (or their parents) described the sources of aid used to fund their higher education. Several staff from college disability service offices also described the sources of aid their students use. Almost all student respondents reported using multiple sources of aid. The most common form of aid received was funding from state vocational rehabilitation agencies, followed by Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI), scholarships or Pell Grants, and student loans.

What barriers and frustrations did students report?

One of the most common frustrations expressed was discovering that their college refuses to consider special circumstances when creating aid packages, including ignoring disability-related expenses.

Students also found negotiating the paperwork for vocational rehabilitation (VR) agencies challenging, particularly when receiving VR funding impacted their school financial aid package. Families reported discovering that their child’s college would not prepare a financial aid offer for them until they applied for VR funds. If VR was slow to respond or did not offer much, the family could be faced with paying most or the student’s entire bill for tuition, fees, books, and room and board. In contrast, in another case a student had to apply for financial aid from their school first, wait for the denial, and then provide that denial to VR in order to receive their tuition support.

Sometimes VR and SSI regulations also posed unwanted barriers for students. One student wished to participate in campus work-study but was prevented from doing so by her VR agency, and this meant that she had to take out unwanted student loans. Another student faced a funding challenge when her VR agency falsely claimed it could not help her unless she used up all of her funds and was at the point of taking out loans.

Several students mentioned a desire to try working part-time, but feared losing their eligibility for SSI and Medicaid. One student with paralysis specifically advised, “Don’t do work study, they used it against my trial work period for social security.” Others mentioned that their financial aid packages had been reduced by the amount of the work-study package offered, which they had declined because their disability prevented them from participating. This removal of aid from the package offered by their college led to an increased student loan burden.

Students also expressed concern about lack of access to medical insurance; limited benefits provided by student health insurance plans; and fear of losing Medicaid when moving to attend school or get a job.

Several students described taking time off from school, attending low-cost in-state schools part-time and taking other unwanted steps to minimize their educational costs. One such student writes: “Prior to receiving DOR (Department of Rehabilitation) benefits I was forced to take a year off because I could not afford to pay for school on my own. (This was after fracturing my leg and being denied additional funds).”

How do funding sources interact? Do their interactions create barriers?

“I am the parent of a 14-year-old. Until a recent injury to my back I worked as a Licensed Clinical Social Worker with people of all abilities. At the same time, my marriage ended, so I applied for SSI for my daughter (who has a disability). Imagine my shock to learn that EE savings bonds my elderly parents were accruing for college counted as “income.” The small college savings plan we had also worked against her (as an SSI applicant). Trying to plan for my “honors student” child, disabled or not, is what I, as a parent, would expect to do. I am extremely aware that she will always need an assistant and class accommodations. Expenses will not be cheap…. This is a contradiction of society’s message of employment for all, as well as colleges expecting help from families regarding financial aid.” ~ Mother with a disability, whose daughter is also disabled

“There is no way for me to save for a rainy day unless I break SSI rules and save money in my parents’ account…to pay for my medications and tuition.” ~ Student with a chronic illness

“BVR didn’t want me working (no work-study) to make up any difference between my scholarships and my expenses, so, like it or not, I ended up taking out loans.” ~ Student

“I have found that (Department of Vocational Rehabilitation) is more equipped to deal with vocational training schools than academic institutions, but my counselor is willing to figure out how things should work for my situation.” ~ Student

“Voc Rehab paid the balance of what the grants didn’t pay.” ~ Student

What successes did students report?

Students’ experiences varied significantly from school to school and state to state. There were eleven students who reported that vocational rehabilitation agencies paid for most or all of their costs when attending community college, university, and/or graduate school (three of them were blind; one had cerebral palsy; one had muscular dystrophy; one had osteogenesis imperfecta; and five did not specify their disability). In addition, one student who’d lost limbs in an accident reported that a VR agency paid for half of his school and living costs during the final two years of his doctoral program, and a technical college student was able to pay for his living expenses and tools because of funds provided by VR and SSI. Another student expressed confidence that if others ran out of grant sources, as he had, that state-funded VR would pick up the remainder of their college costs. These students were very satisfied with their VR experiences and reported gratitude for the support they had received.

Several students stated that they had received scholarships related to their disability, academic performance, leadership, or job experiences. In contrast, other respondents found few scholarships related to their disability, particularly if they did not have blindness, deafness or use a wheelchair.

One young woman was surprised to learn that others struggle to pay for school, because her community college waives her tuition fee if the local Social Security Administration office verifies her disability status.

Several students reported creative strategies used to make their school plans work. For example, one mom with a disability used an SSA Plan to Achieve Self-Support (PASS) to pay for her child’s daycare while she attended graduate school. A student with cerebral palsy fought to persuade his college’s dean that attending three classes constituted a full-time course load in his case, and he won. Another student’s solution was to choose an inexpensive distance-learning program that she could attend part-time and to ask her parents to save part of her SSI funds for medical expenses and tuition. Finally, one student took a year off from school to work for AmeriCorps.

Success Stories:

“I was also given additional funds from SSI because I was attending college full-time during the age of 18 - 22.”

“The Massachusetts Commission For The Blind provides me with tuition reimbursement and with money for readers. Last year, I also received a scholarship from the National Tour foundation; This scholarship was specifically for people with disabilities who have an interest in travel. Although I am majoring in communications, I have worked at a travel agency for four years now and was given a small scholarship by this company as well.” ~ College freshman who is blind

“EOPS paid for my books, and sometimes paid for parking passes. I also go a federal Pell Grant, which was cash that went straight to me. That help when my books went over the very low $100-$200 limit for EOPS. EOPS also gave you rewards for following their rules, and had a book loan if you couldn’t buy the books. One of the rewards was priority registration so you were sure to get your classes (very important now when classes have been cut because of the budget!). Also they gave you a ‘meal ticket’ for seeing your counselor when you were supposed to. So you got $5 worth of food at the cafeteria. I graduated from that school in May 2003, and now I am on to a large university, but keeping my job at the community college. ~ Student with bipolar disorder, who is also parenting a son who is blind

“Yes, the financial aid office secretary and I became good friends! :) Any opportunity for a paid internship or an off-campus position was something that I would jump at because then it would be considered independent income rather than that provided by the school–this way it would not affect my aid package.”

Comments from professionals:

“Many blind/visually impaired students pay for their college educations by way of Federal grants (e.g., PELL) and tuition and room and board assistance from State Vocational Rehabilitation agencies. Some earn scholarships, of course, and a few – far too few in my view – have part time jobs. I am sure many take out loans and have parental support, but have no statistics on this.” ~ Staff at employment center for persons who are blind

“At this time, the students that I am working with that are choosing colleges & universities as their post secondary option are falling between the “moderate to mild” learning disability spectrum. They are paying for their education the same way as typical learners: with government financial aid loans, local scholarships & family support. Most, if not all, of my families are taking out “parents loans” as well, in addition to getting second jobs to help cover tuition bills. The financial burden of college is weighing heavily on all families and hopes of landing a “good job” after graduation in order to pay-off these loans seems to be the chosen method.” ~ Transition Planning Coordinator

Finding 4: It’s not just colleges and rehabilitation agencies that fund student accommodations – students pay out-of-pocket for them, too.

We asked students to tell us about the services they need as college and graduate students and how they are paid for. Their reports may be grouped into four categories: services provided by high schools; services funding by colleges and universities; services funded by VR agencies; and disability-related services which students pay for themselves.

Although we did not ask students about whether their public schools paid for services needed for the transition to college, several elected to write about this topic. Two young students reported positive experienced in high school. A college freshman who is blind reported that his public school system paid for mobility training and that this helped him prepare for independence and life on campus. A recent high school graduate with dyslexia said his school district paid for his use of expensive software to help compensate for his learning difficulties.

On the other end of the spectrum, one student described receiving emotional and verbal abuse from staff throughout elementary and high school, and his family’s expenses related to hiring an advocate and psychologist to help him with his learning disabilities, attention deficit hyperactivity disorder (ADHD), and working with the school system. A graduate of a community college’s business program described being told that she would never be able to complete high school, and having people take for granted that her future was limited.

We also received comments from staff persons at several non-profit organizations who stated that their constituents rarely are prepared for postsecondary education. One wrote: “Unfortunately, far too many students with intellectual and cognitive disabilities do not get a high school diploma but, rather, a certificate of attendance which is not the same thing and limits participation in higher education.”

What services and accommodations are colleges funding?

The most common services and accommodations provided by colleges to our respondents were tutoring, note taking, tape recording of lectures, testing accommodations, alternative format course materials, and advising by staff in the office for students with disabilities. Many students also were provided access to assistive technology, particularly when it was required for computer use by students who are blind or dyslexic.

What services did your college provide?

“Adaptive technology has been very important to my success. I use JAWS (Job Access With Speech), the Kurzweil Scanning Program, the Duxbury Braille Translation program and a note taker known as Braille N Speak (produced by Freedom Scientific) on a daily basis. Having this technology available to me allows me to take four courses per semester. The scanning and translation programs which I mentioned above are available in the Adaptive Technology Lab here on the Fitchburg State College campus.” ~ College freshman who is blind

“I am hearing impaired, since birth with nerve damage, and can hear about 15%. I require help in the communications area in class. Thanks to the disabled center, they pay for a note taker for me and an FM system. I also can use their tutoring and proofreading services as well. UCSC is an excellent college in terms of being able to provide what I need. Furthermore, they also provided me a TTY! Despite all of these wonderful services, the school needs to provide closed captions. I am missing questions on my tests, thus, decreasing my grade.” ~ College student who is hard of hearing

“The first college I went to is San Francisco State. The Disabled Center had extremely low money and the office was located, (in my opinion,) in the worst building on campus—a trailer. It took me a half an hour to find the building because I did not know they would place the office in a small trailer. They refused to provide me with an FM system saying that there are only 3 available and other students needs them more than I did. (While I was on campus there were news about mistreatment toward students in wheel chairs on campus and the school was being sued by these students.)” ~ College student who is hard of hearing

What services or accommodations are vocational rehabilitation agencies funding?

Students receiving funding from VR most often mentioned receiving payment for tuition and books. Negative experiences were reported regarding requesting funding for services individually tailored to the student. For example, a student who is blind was unable to get qualified readers from campus volunteers, and asked VR to fund paid, competent readers. She felt the need to supplement their pay from her own funds because VR only paid minimum wage. When individualized services were funded by VR, they typically included mobility training, assistive technology, or readers. In some cases students were able to obtain funding for laptop computers.

Most students did not report difficulty in having their disability recognized by VR agencies, but instead had difficulty persuading counselors that the services they requested were warranted. However, one student’s case was closed earlier than she preferred because her state VR agency refused to acknowledge her treating physician’s orders for management of her bilateral carpel tunnel syndrome.

Students mentioned the importance of filing all VR paperwork early, because of potential delays in receiving funds for tuition and books. Some students needed to complete VR paperwork especially early, because their qualification for financial aid from their college would not be determined until VR provided a plan of support. In other cases, VR would not offer assistance until the college documented its refusal of financial aid to the student. In both cases, the time delay in completing paperwork could be significant.

Students frustrated with VR experiences also tended to feel that VR pushed them to limit their educational and career goals. For example, in some cases tuition would be covered at local community colleges, but not at four-year state universities. Others already attending four-year schools were told that they were ineligible for VR aid because they were already in their junior year. Similarly, some students were told that funding would not be provided for them to attend graduate school. This was not a universal experience – one student transferred to a four-year college and took out student loans to cover the increased costs not covered by her continued VR payments. In addition, several students who are blind and one student with muscular dystrophy received generous VR funding for graduate education. It was unclear whether the variation in VR experiences was due to differing funding levels or regulations from state-to-state, or to inconsistent interpretations of regulations on the part of VR counselors.

Did you receive the services you needed from vocational rehabilitation? Students report a great variation in experiences:

“I feel as if Voc. Rehab. only wants to help pay for the minimum requirements to get “me/us” out to work as soon as possible rather than allowing me to become a contributing member of society in a field which I would enjoy, rather than just “hurry me” out to work.” ~ College student with chronic illnesses

“I live in Buckley, WA. I graduated from Green River Community College. I went to my local Dept. of Vocational Rehab. in Puyallup to fund my expenses. They paid for all books and tuition.” ~ Recent graduate

“I was one of the lucky ones to be grandfathered into our “older” VR program since I had already been in VR. A year after I began working with VR, the regulations changed a bit and no longer (or seldom in case need was substantial) would VR carry through each semester until completion of a degree. Therefore, even though I had to attend for five years (including summer school) VR still, thankfully, provided assistance.” ~ Recent graduate with traumatic brain injury

“The BVR (Bureau of Vocational Rehabilitation) subtracted one huge frustration from my return to school. At the time I was living on SSI and SSDI, but this wasn’t even enough to pay for rent, food, and utilities, let alone school. The BVR paid for half of my schooling and half of my rent for the last two years. I could not have afforded it had it not been for their help. Thank you Bureau of Vocational Rehabilitation.” ~ Recent graduate

“If he had chosen to go to our local community college, Montgomery College, Voc Rehab told us that his tuition would be covered. This was not the case at UMD, however.” ~ Mother of a student who has dwarfism

“I have muscular dystrophy and am currently in graduate school. If it were not for voc rehab, I’m quite sure I would not be where I am today. They paid for my tuition and books throughout undergraduate school. I was able to receive a few academic scholarships, but they were never enough to pay for everything. My first semester in graduate school, I received a graduate assistantship that paid for all of my tuition plus a stipend that allowed me to buy my own books. However, teaching and keeping up with my own classes was a bit too much for me, so I decided not to take the assistantship again. Fortunately, voc rehab is going to save the day again and start paying tuition and books.” ~ Graduate student

“Now as a graduate student I am not eligible for the scholarship from vocational rehabilitation, nor am I eligible for a Pell grant.” ~ Graduate student

“Voc Rehab in Kentucky refuses to assist graduate students with prior graduate credit.” ~ Student

“Kentucky Rehab. accepted full responsibility for my college costs from 1967 through 1971. They paid full tuition, fees, books as well as a monthly stipend for a tutor. In 1971 I entered graduate school at which time Kentucky Rehab. paid full financial assistance as before. Interestingly, both of these schools I attended were private schools, costing three to four times as much as if I had chosen a State school. Ky. Rehab. honored my choices…. Kentucky Rehab. paid for books and tutor/reader.” ~ Person with a graduate degree

“I was a client of the Virginia Department of Rehabilitative Services from 1994 until 2001. The agency reimbursed my apartment rent during my first year as a graduate student (1994 - 1995). My case was closed in October, 2001, because the agency refused to recognize the treating physician’s orders regarding my care and treatment for the bilateral carpal tunnel syndrome.” ~ Graduate student

Difficulty Accessing Financial Support in the Community:

“I had a three year old child who was not eligible for subsidized daycare as both parents were required to work or attend school full time. The exemption for disability supposedly was for the “completely incapacitated” which we couldn’t be if we were going to school. The University offered some daycare to students, most of which was inaccessible, but since I wasn’t attending full time, I wasn’t eligible for vary many hours of care. I used a PASS to pay for extra hours of daycare.” ~ Mother and graduate with a disability

What services or accommodations must students fund themselves? What extra expenses do they have because of their disabilities? Seventeen students responded to this question. The most common out-of-pocket expenses reported were for tuition, accessible transportation, medication, books not paid for by VR, computer equipment, and daycare. Students also had to pay for hearing tests, batteries, neurocognitive testing, assistive technology, special medical diets, tutoring, supplementary pay for readers, and computer supplies.

This student’s response to our question about out-of-pocket expenses was typical: “(Oh my gosh) - so many. Tons of medical expenses that weren’t covered by Medicare or Medicaid: Housing modifications, medications…supplies such as gloves, lubricant, OTC’s, lots of things. Voc rehab helped some, but finding low rent housing that was accessible was a big problem, they didn’t help at all with that. Neither did disability services. I was basically out there on my own, no family, just friends to help.” Similarly, a graduate student who is deaf wrote, “Since VR won’t support everything…I have to pay with the student loan or out of pocket the scanner, dragon-dictate with ASL (American Sign Language) translator since it would help with the papers for the MA degree I’m seeking now.”

The most frequent complaint was difficulty in obtaining funding for transportation. A number of students who were blind, had mobility impairments, or had cognitive difficulties that made driving unsafe or impossible had to recruit friends and family members to bring them to classes, or pay out-of-pocket for taxis and buses. One student wrote that when accessible transportation was available, it cost her $10 per day, and that this prevented her from returning to a rewarding off-campus internship.

Another common concern was that students who take longer to complete college pay more tuition in total and pay more for each credit earned. For example, “I went to graduate school half-time because of my disability, so I didn’t qualify for any financial aid. I took twice as long to finish and paid twice as much for the same classes as my peers.”

Students sometimes had to pay for or find volunteers to assist them while waiting for agencies to agree upon who would fund services. For example, one woman shared, “I was finally able to get an attendant to meet me at school for a bathroom break the semester I graduated…this didn’t cost me out of pocket but I encountered a lot of resistance from the Division of Developmental Disabilities about paying for it…they considered it VR’s responsibility, VR did not. That went on for two years, before DD agreed to pay.”

Individualized needs were harder for students to meet, such as funding for a private, accessible dorm room, or for captioned videos for a film major who is deaf. Demonstrating the need for personal assistive technology, like access to one’s own laptop computer or hand-held organizer, was also difficult for students. Proof of disability was not always enough to qualify students for services, such as when a mother with a disability could not obtain subsidized daycare for her daughter because she could not work or attend school full-time. Obstacles such as these increased students’ out-of-pocket expenses.

Three students wrote of not receiving health insurance or Medicare coverage for necessary medications and having monthly expenses of between $300 and several thousand dollars for drugs, which meant not getting treatment. In one case, this led to a number of emergency room trips for asthma attacks.

Finding 5: There is little benefits planning or communication between students’ rehabilitation counselors and their college disability services staff. Receiving funds from one agency typically negatively affects students’ ability to secure support from other sources.

Thirteen respondents (eleven students and two parents) commented on our question about how VR agencies, SSI/SSDI, college disability services, and college financial aid offices interact. Nine were quite dissatisfied with the ways agencies communicate. Unanticipated roadblocks and confusing advice related to accepting VR or SSI funds were their chief complaints.

Very few students mentioned interactions between college disability support staff and the VR agencies and other professionals in their lives. Most comments suggested that students were advocating for themselves without having an experienced, knowledgeable specialist guiding them. These two comments were typical: “I don’t think the two offices ever communicate. The only thing that links them together is when I call and ask the Disabled Student Services Office to fax my grades to my DOR counselor” and “no - that office was NOT helpful when I was in school, 10 yrs ago…. no coordination whatsoever.” Only two respondents mentioned repeated communication between their medical, psychological, rehabilitation, and campus disability services professionals.

The complicated interactions between VR funds and colleges began for some students when they disclosed their disability to their college financial aid office, only to be told that they were required to apply for VR funds before the school could offer a financial aid package. In other cases, the opposite effect occurred: VR assistance was received only after proof of federal student financial aid was provided.

Some students found VR’s requirements for academic achievement very helpful. Others complained that their advice was complicated and confusing because of frequent changes in VR staff, or that VR counselors pushed them too hard to finish their studies as quickly as possible, even if they were working and attending graduate school simultaneously. The opposite experience was reported as well, where college professors would encourage students with disabilities to reach for their dreams, but VR counselors would push them to plan on never being well enough to work outside of the home. The lack of flexibility for students with disabilities to explore their options was mentioned, with funding crises and a focus on results as possible explanations. Some students also were upset that having succeeded in school earlier, such as having some graduate level credit, could disqualify them from receiving VR funds. The variation in their experiences underscores how difficult it is for students to know what to expect when seeking assistance from VR.

Students found it frustrating and confusing to sort out the interactions between VR funding, SSI, Medicaid, and opportunities such as campus work-study programs and company internships. Receiving one benefit often meant missing out on another one, to the detriment of the student. For example, one student wished to participate in campus work-study, but felt she could not do so without losing her VR support. Another feared participating in work-study would jeopardize her eligibility for SSI and Medicaid. Some students participated in work-study or internships, to gain independence and career skills, but then found that this made them ineligible for SSI.

Two respondents described SSI resource limitations as a barrier that prevents them from preparing for and succeeding in college. A college student mentioned that she must quietly ask her parents to save a portion of her SSI grant (and not disclose this to the Social Security Administration) so that she can pay for medications, tuition, and books. She cannot openly save enough for school and medical expenses without losing her SSI eligibility and cannot attend school or work full-time. On a related note, a mom and daughter who are both disabled discovered that the daughter was ineligible to receive SSI because her grandparents had been putting aside savings bonds to help pay for her college education. The mother, who cannot currently work, is unsure how to prepare financially for her daughter’s special needs in college, when she is prohibited from saving for them and also finds her daughter ineligible for SSI.

Finding 6: Students with disabilities report that they are concerned about taking out student loans. Thirteen respondents identified as students commented on our question about student loans, as well as one respondent who did not identify her role.

The majority of respondents (nine students) were worried about student loans because of their disability-related needs. Two of them will not take out loans because of their concerns about being able to work and repay them. Four other students were concerned that they might not be able to work enough hours to repay their student loans, but did not specifically state that they would not take out loans in the future. Typical concerns are highlighted in the quotes below.

Only three students responded that they were not concerned about having taken out loans. One felt comfortable with her loan status because she was confident that she would be employable when she graduated. Another student who was unconcerned wrote: “You can get the loans forgiven if you become too disabled to work in the future, I did.”

In addition, one respondent felt she was ineligible for most student loans because they required a course load that she couldn’t handle.

How do students feel about loans?

“The conditional forgiveness of my pre-disabled Perkins Loan is dependent upon me falling below the poverty level in Kentucky for three years…. Stafford loans will enable me to return to school this fall for a graduate program”

“After seeing how volatile and unpredictable my health has been in recent years, I want to avoid taking out student loans whenever possible, because I have no way of knowing if I will ever be well enough to repay them. I feel even more resolute about this now because I have a sibling who is mentally ill and unable to work, and now my parents are paying back my sibling’s student loans, car insurance, COBRA insurance, etc., and it’s a real financial strain. I would never want them to have to consider doing that for me.”

“The job didn’t work out because I could not find a way of commuting that took less than three hours each way, and six hours plus full time literally put me in the hospital. I had trouble with depression during this last college attempt, and ended up being in the hospital six times in two years between this mess and my father’s suicide. I still owe more than $10,000 and my doctor will not certify me as permanently disabled. He says that eventually I will be able to work, after a few more years of therapy. Sallie Mae wants me to start paying now and I have only Social Security for income. Any suggestions?” ~ Woman who has cerebral palsy

Her husband comments: “There is a gap between what is supposedly allowed for being sick and the definition of permanently disabled. Her work experience is that sooner or later someone with a prejudice will be appointed over her and will find an excuse to get rid of her. This applied to several jobs.”

“My position as a full-time classified staff at this university was eliminated … because the department head refused to provide the promised reasonable accommodations. I have been unable to obtain full-time employment with benefits since that time. I have submitted 435 applications (135 at this university), and have had 147 interviews since May 2, 2000, when I first learned my position might be eliminated. I have been unemployed for three years and know I will never work again. I have maxed out my one credit card and am unable to pay the August rent on my apartment. I have been told by the local social services department that I am not eligible for services, such as food stamps or rent assistance, because I am overeducated, overqualified, and do not have children. I have incurred approximately $35,000 in student loan debt I will never be able to repay.” ~ Graduate student who has bilateral carpel tunnel syndrome

“Yes (I am concerned about) getting a job that will help me pay off the loans as well as the other daily living support. Going to school is the easy part however it is getting the job that is the hardest part today.” ~ Graduate student who is deaf

Finding 7: Students with disabilities do not feel encouraged to pursue graduate education, and they worry about how they will fund it.

Twelve students commented on our question about where they have sought (or will seek) funding for graduate education.

The most common concern mentioned by college students was the prospect of losing VR support as a graduate student. A college student hoping to begin graduate school soon stated, “I am planning to plea my case to the DOR, but if they cannot financially support/help me then I will be forced to either not attend grad school at all or attend one or two classes per semester in order to pay for it myself.” One college student predicted that she would not attend graduate school because she was sure she would have used up her family’s financial resources by attending college. These worries stood in contrast to responses to earlier questions in which students gratefully described receiving VR funds for both undergraduate and graduate education.

A college student shared her concern that there will be even more pressure to shorten the time that educational services are funded by VR agencies if many state-level VR programs become part of the SSA Ticket to Work Program. This is because VR agencies serving Ticket holders will not get paid until their clients are gainfully employed. She felt that there could be an incentive for Ticket agencies to avoid paying for graduate school so that students would enter the workforce earlier.

Students currently attending graduate school reported difficulty in obtaining funding from VR agencies. One could not do so because she was considered gainfully employed; three were told that their state’s VR program does not assist graduate students. These students opted to take out additional loans. A law student commented, “After being diagnosed with ADD, I was told that I could have had my undergrad paid for, or at least part of it, but not grad school as I had already “educated myself out of my disability.”

The graduate school’s willingness to accommodate students’ needs was key in whether they could afford to continue their education. For example, a blind graduate student found that professors were reluctant to hire her as a teaching assistant because they didn’t understand how she could do the job, and this made it difficult for her to obtain assistantship funds. She opted to take out loans. In another case, a graduate student with mental illness lost his assistantship and scholarship when he took time off from school due to an episode of major depression.

Several success stories were shared. One graduate student obtained tuition benefits and professional development funds from the university at which she works. Another student described starting early to seek out scholarship opportunities, because of limited government funding for graduate education.

One student expressed concern about lack of access to law school for students with disabilities who cannot attend classes on campus, who cannot find accredited distance learning law programs.

Obstacles to Employment:

“I went to MacMurray College and graduated with a BA in Journalism, English and French. I also have a liberal arts degree. I graduated with awards. Since then, I have been hospitalized six times in a psychiatric hospital/ward. I cannot get a job using my college education acquired after my brain stem injury. I no longer receive psychiatric/psychological care. I do not need it–the people who treat me badly do. Paying for, going to college is one thing, navigating through the world of insensitive idiots is another.”

Finding 8: Many students find it difficult to learn about their right to financial assistance.

Knowledge about the Higher Education Act and financial benefits: We did not specifically ask students to describe their knowledge about the Higher Education Act, which funds most student financial aid. One may infer that they are not especially familiar with this law because of the confusion their narratives indicated about Pell Grant eligibility, loan deferment options, how to handle disability-related expenses, and how to self-advocate regarding benefits. In particular, we noted that no students indicated that they were aware that the Higher Education Act permits them to request an increase in college financial aid because of out-of-pocket disability-related expenses. The difficulty of this situation was increased by the varying VR policies from state to state and by the differing responses VR provides to students when they ask for individualized assistance, tailored to their specific needs.

Knowledge about eligibility for disability services: Although we did not ask students to write about whether they felt adequately informed of their right to receive accommodations on campus, this theme was raised in many responses. For example, one student wrote: Not knowing what was available was my worst problem.” Another student described misconstruing the information she received from her roommate, so that she believed that campus disabled student services (DSS) were only for minorities with disabilities.

Students who did not receive disability services during high school (such as those diagnosed during college) found it hard to learn about college services, learning disabilities testing, vocational rehabilitation agencies, and SSI while also keeping up with their classes. This is where the lack of education and mentoring services provided by their colleges became significant. Their initial contact with campus DSS services would be significant.

Finding the DSS office was sometimes a problem. One student wrote, “When I first became a student at University of Louisville, I was sent from building to building trying to gain help, and if I had been a young person I would have put my education behind me and went home.” Similarly, a student from California described hunting all over campus for the disabled students office, only to find that it had been relegated to a small trailer. A high school student conducting college campus visits discovered that a number of schools placed their office for students with disabilities on the second floor of a building without an elevator.

Once contact was made, students often felt no less confused. One student described contacting DSS offices and being told that they “probably couldn’t help me” and another met with a counselor only to be told that it was surprising someone so intelligent was in need of assistance.

Students on campuses with limited DSS services, who were left to self-advocate with only a letter verifying their disability status, had difficulty learning to do so if they had little previous advocacy experience and did not have family support.

Finding 9: Students offer advice to their peers with disabilities. They most often recommend participation in state vocational rehabilitation programs as a way to pay for college.

We asked students and staff to suggest ways that youth with disabilities can pay for college and graduate school. Six students, two rehabilitation counselors, one advocate from a consumer group, and two unspecified respondents suggested ways that students should pay for their higher education.

A student recovering from brain cancer encouraged others to “START EARLY. I could see that financial aid was going to be a huge issue for me. I began applying to scholarships my sophomore year of high school and went all the way to the end of college so I could pay off the expenses. I find it to be an interesting challenge for those who come from middle income families, as they are usually not eligible for the “regular” financial aid, and yet their income is not plentiful enough to pay for college/post-secondary without it serving as a significant burden.”

Two graduate students and one working adult with disabilities recommended that students begin by applying for state-funded VR assistance and then seek financial help from their colleges or universities. One advised, “Push voc rehab to pay more than they say they will. They paid for my grad degree too.” An academic skills advisor at a Wisconsin college and an advocate from a state-level autism organization also recommended state VR agencies.

In contrast, a student who is deaf wrote: “Try all you can not to depend on Vocational Rehabilitation because their system is so overburden and favoritism plays a role. Only thing I can say is to get smart on where the money is. If you plan to get student loan try to keep it at an affordable limit.”

A rehabilitation specialist at a community college suggested that students younger than 23 document their financial independence over the course of one year and then apply for increased aid as an independent on the FAFSA. She also recommended that students begin at community colleges because of their grant funding for skills labs, tutoring sessions, and smaller classes. She expressed concern that out-of-date documentation of learning disabilities often results in less services being provided to students than they actually need. She recommends that high schools have more case managers to assure proper transition planning for higher education.

A rehabilitation counselor at a four-year university echoed students’ advice that they begin at their state’s vocational rehabilitation program. He followed this with recommending federal programs such as rehabilitation assistance from the Veteran’s Administration, then suggested consulting non-profit organizations about disability-specific scholarships, and finally recommended the federal student financial aid process.

One respondent advocated student education about the rights to health insurance portability and continuity, stating that if students had insurance within 30 days prior to joining a school’s student insurance plan, their disability-related medical needs should not be excluded as pre-existing conditions.

Many respondents offered nonspecific comments encouraging other students to persevere and succeed in school, and expressed the hope that sharing their story would inspire others to succeed or give them hope.

How could college disability accommodations be improved?

“I am able to meet my school’s requirements through no sleep and hard work with a 3.55 GPA. However, there are many things that make school hard both financially and through relationships with teachers and TAs. It would be nice to have enough money to buy more food to keep myself healthy and ready to learn. It would be nice if there were more closed captioned videos available for the teachers to use for me. (Although some teachers refuse to use the captions.) It would be nice if the TAs would wear the FM system and stop deducting points from non-participation in discussion. (How can I participate when I can’t hear well?)” ~ College student who is hard of hearing

Finding 10: Students with disabilities offer unique insight about how the system can be improved to help them afford higher education.

Six students and two staff members replied to our question about improving the financial aid system in their narratives. Their suggestions included:

• Providing free education for students with disabilities;

• Continuing VR support through graduate school;

• Funding private scholarships for students with disabilities who overcome extraordinary barriers to gain acceptance to college;

• Enhancing access to distance learning programs for those who cannot attend classes on campus;

• Exempting students from entrance exams if their disability significantly affects their test-taking ability ;

• Providing ample financial resources for students whose ability to complete assignments in a timely manner depends on the use of assistive technology;

• Increased accessibility for students who are deaf or hard of hearing, through closed captioned videos, FM radio systems, interpreters, and the provision of free TTYs in dormitories;

• Enhancing the role of the campus disabled students office in educating students about self-advocacy, benefits planning, and disability law;

• Educating financial aid officers and disability support staff about the ways they are empowered to help;

• Allowing students with disabilities to attend school half-time and not pay higher tuition per class;

• Providing extended eligibility for Pell Grants for students with disabilities

• Exempting students with disabilities from SSI resource limitations that prevent them from saving for college (i.e. permit them to use the states’ tax-free 529 college savings plans);

• Creating supplemental grants to compensate for the loss of financial aid students incur when they must decline work-study packages because of disability issues;

• Establishing vocational rehabilitation program rules at a uniform minimum level nationwide, so that each state’s program will pay for baccalaureate and graduate degrees and living expenses so there isn’t such a dramatic difference in access to higher education from state to state.

Conclusions:

Students with disabilities face numerous financial barriers. These obstacles are more complex than those encountered by most of their non-disabled peers. These barriers limit students’ choices about educational and career goals and independent living. Improving employment, self-determination, and self-support depends on making federal student financial aid, SSI, VR, Medicaid and Medicare more accessible to those with disabilities.

Higher Education Act Policy Recommendations from the NCD Youth Advisory Committee

The Higher Education Act’s authorization and funding of programs to increase student access to postsecondary education presents a welcome opportunity to assist students with disabilities. The intention of the Act is to enhance the accessibility of postsecondary education to all students. The Youth Advisory Committee believes the policy recommendations below will help ensure that the Act’s intention is achieved, by removing barriers that prevent adolescents and postsecondary students with disabilities from participating in the programs available to their peers. They also will increase access to university resources for community members and professors with disabilities. The Youth Advisory Committee presents these recommendations for the consideration of the National Council on Disability, to assist it in guiding federal policy.

Research and Demonstration Projects

It is important to begin by increasing knowledge about postsecondary education and students with disabilities:

a) The socioeconomic data that the Secretary of Education gathers from student aid recipients should include information about disability status. The implications of having a disability are key factors when students decide to take out student loans, participate or decline work-study opportunities, or participate in vocational rehabilitation and supplemental security income programs. Information on the ways these variables impact student financial aid will enable better coordination of aid in the future (See Title I, Part C: Cost of Higher Education, Section 131 (Improvements in Market Information and Public Accountability in Higher Education), Part D (Student Aid Recipient Survey).

b) Continue and expand the Demonstration Projects to Ensure Students with Disabilities Receive a Quality Higher Education (See Section 761). Extending these 3-year grants that improve the teaching of college students with disabilities would allow the dissemination of their findings to the broader educational community.

Teacher Quality

The Higher Education Act’s emphasis on professional development for K-12 educators offers the opportunity to better prepare elementary and high school students with disabilities for higher education. We recommend these key steps:

a) Forgive student loans of professionals committed to working with underserved populations such as students with disabilities, including special education teachers, transition planning professionals, social workers, vocational rehabilitation counselors, personal care assistants, and physical and occupational therapists.

b) Add language regarding professional development in special education to the descriptions of ways that Teacher Quality Enhancement Grants (Section 201) and State Grants (Section 202) may be used.

c) Ask that current language be retained that specifically states that Partnership Grants may be used for professional development programs teaching how to educate diverse populations, including youth with disabilities [See Section 203, Part e(1)].

d) An emphasis on recruiting, educating, and providing accommodations to public school teachers with disabilities should be included in the Teacher Recruitment Grants (Section 204), which provide funds to states and partnerships for scholarship programs, support services to education students, and support services during the first 3 years of teaching. Those support services should be expanded to include disability support services. As diversity of all kinds benefits everyone, all students would benefit from daily interaction with successful teachers with disabilities.

Outreach and Transition Planning for Participation in Higher Education

Students with disabilities are not receiving transition-planning services as mandated under the Individuals with Disabilities Education Act (IDEA). These services must be provided so that students with disabilities are prepared to navigate the complicated world of college, career, disability and financial services. The Higher Education Act’s emphasis on early outreach programs should include support for transition planning and preparing students with disabilities for independence.

a) Stipulate that the Department of Education will create a national, free resource to provide parents, youth and educators with information about transition planning, benefits planning, and financial aid for higher education for students with disabilities. This free service should be available online and by telephone, and should include a database of transition planning centers and professionals so that individuals may seek referrals to experts in their community. It should also provide information about the legal rights of college and graduate students with disabilities, services available from individual schools, and the ways families and students with disabilities may use services from the Social Security Administration, state vocational rehabilitation agencies, Federal TRIO funds, and federal student financial aid to support higher education.

b) Create a new TRIO early outreach and student services program that addresses postsecondary transition planning and expands permissible use of early intervention funds for middle, junior and senior high students with disabilities. Such an outreach program could fund summer or after-school programs including disability mentoring, college visits, career planning, internships, self-advocacy instruction, and other steps to increase the independence and readiness of adolescents with disabilities for postsecondary education. This program would fit the goals of HEA Title 4, Part A, Subpart 2: Federal Early Outreach and Student Services Programs (Section 402), which authorizes other programs to assist disadvantaged students in preparing for college.

c) Expand the disadvantaged populations identified for preparation for postsecondary education and doctoral education through the Federal Trio Programs to include children and adolescents with disabilities (See Title 4, Part A, Subpart 2, Section 402, Chapter 1).

Increasing Accessibility of Colleges and Universities

Without increased access to the physical campus, media materials, and student support services at their schools, students and professors with disabilities will continue to struggle to participate fully in campus life. There must be incentives for infrastructure and support services grants to be spent in ways that include improved disability accessibility.

a) Recognize in HEA that disability is a barrier leading to decreased participation in higher education.

b) Authorize special consideration for Title 3 grant applicants seeking to make campus buildings, grounds, recreational facilities, transportation and media materials accessible to students, professors and community members with disabilities (Part A: Strengthening Institutions, Section 311: Program Purpose)

c) Authorize special consideration for Title 3 grant applicants expanding or maintaining student services provided by a college or university office for students with disabilities.

d) Expand Section 402D (Student Support Services) to specifically list services to increase the retention and success of students with disabilities as permissible services.

e) Ensure that graduate school infrastructure and science program improvements include enhanced accessibility to students and professors with disabilities (See Part A: Strengthening Institutions, Section 326: Professional or Graduate Institutions, Part a: General Authorization, part c: Uses of Funds).

f) State that the Secretary will consider the accessibility of graduate programs to students with disabilities when evaluating grant applications within the Postbaccalaureate Achievement Program (See Section 402E, Part D: Award Considerations). In addition, add that these awards may be used to fund adaptive technology and other disability accommodations (See Part E: Maximum Stipends).

g) Expand the authorized activities in the Learning Anytime, Anywhere Partnerships to include the development of model programs to make distance learning even more accessible to persons with disabilities. This is particularly important to students with disabilities who are physically unable to attend graduate school on campus (See Title 4, Subpart 8, Section 420 G).

Financial Aid

Federal student financial aid must be made accessible to students with disabilities and their families. Federal financial aid forms must be changed so that they facilitate college and university compliance with federal law regarding student financial aid, disability-related expenses, and nondiscrimination.

a) Provide an option for students to disclose disability-related expenses on the Department of Education’s Free Application for Federal Student Aid (FAFSA) form. This would enable colleges and universities to comply with the Higher Education Act’s requirement that Pell Grants and Cost of Attendance calculations include out-of-pocket disability-related expenses (See HEA Title 4, Subpart 1. HEA Section 401, Part 3a and Title 4, Part F, Section 471).

b) Expand the description of expected Family Contribution to a student’s expenses to state that a family’s contribution to educational expenses shall be reduced by the amount they spend annually on their dependent’s disability-related needs, whether that dependent is the college student in question or the sibling of such a student (Sections 473-477).

c) Authorize financial aid officers to extend federal aid eligibility on a case-by-case basis when disability impacts student attendance/completion within set time parameters. Insert statement that students whose disability causes them to require additional semesters of financial aid should retain their eligibility for Pell Grants (Section 401c: Period of Eligibility for Grants).

d) Recognize that students with disabilities may not be able to participate in the Campus Work-Study Program while also attending classes. To compensate for this disability-related challenge, offer supplemental grants in the form of Academic Achievement Incentive Scholarships to ensure that students with disabilities don’t have to take out more student loans than their non-disabled peers (See Title 4, Subpart 2, Chapter 3).

e) Clarify the permissible uses of TRIO funds to support students with disabilities to include payments for tuition, textbooks, support services, and assistive technology.

f) Require all student loan programs to permit the deferment of loan repayments due to disability. The medical determination of total and permanent disability should not be necessary for a disabled student to qualify for temporary loan deferment (see loan programs in Title 4 parts B, D, and E)

g) Ensure that all college savings plans and other financial programs designed to support higher education are accessible to students with disabilities, including students and families that receive Supplemental Security Income (SSI) and Medicaid. Current SSI resource limitations prevent students with disabilities and their families from saving for college.

Recommendations for Future Research

The Youth Advisory Committee counsels NCD to recommend improving youth disability research as follows:

Prepare for improved student data collection

Gather information directly from students and financial aid officers

• Undertake new studies in which college and graduate students are interviewed, instead of gathering data solely from parents and educators * *
• Determine university financial aid officers’ familiarity with disability-related provisions and requirements in the Higher Education Act, Americans with Disabilities Act, and Section 504 of The Rehabilitation Act * *

Determine differences between funding and services at individual states and institutions

• Explore whether universities’ rules and funding levels enable financial aid officers to comply with the laws mentioned above * *
• Quantify differing service and funding levels at campus disability services offices at postsecondary institutions nationwide * *
• Identify the basic VR services funded in each state, such as a state agency’s average funding granted per student, how this compares to a student’s cost of attendance, and the percentage of VR clients whose baccalaureate or graduate degrees are funded by the agency. Examine differences in regulations from state to state and in the interpretation of these rules by individual counselors. * *
• Develop curricula for high school and college transition planning programs based on the findings from the studies above, which describe the financial system students must be prepared to navigate. Measure the efficacy of the curricula and training by evaluating college and graduate student satisfaction and educational and employment outcomes.

Learn about student loans and disability issues

• Compare the educational loan burdens of students with and without disabilities

• Describe the variation in loan deferment or default options from state to state (i.e. must permanent medical disability be declared instead of a temporary loan deferment)

Explore accessibility of existing educational and work programs

• Evaluate the adequacy of the workplace accommodations that universities provide to their work-study students or graduate assistants * *
• Examine the accessibility of differing college majors and graduate school programs to students with disabilities, particularly programs preparing K-12 educators * *
• Examine the accessibility and ADA compliance of campus facilities at colleges, universities, and graduate schools

Comprehensively describe the financial concerns of students with disabilities

• Compare the total cost per credit (tuition, housing, food, transportation, disability and medical expenses) for graduates with and without disabilities. Determine the impact of extended studies on total costs and cost per credit. * *
• Determine the ability of students with disabilities (or their families) to save for college, comparing those with and without SSI assistance with non-disabled students (or their families) * *
• Determine the pattern of interaction between VR support and post-secondary financial aid (including whether VR clients are able to participate in campus work-study programs, internships, or off-campus jobs) * *
• Identify the percentage of students with disabilities opting for distance learning. Describe subgroups such as those who choose distance learning because they physically cannot attend classes on campus; work and go to school at night; or wish to live independently on campus but cannot afford to do so. * *
• Examine the financial impact of losing health insurance, or having very limited health insurance, on students with disabilities

Measure relationships between educational financial aid and employment outcomes

• Employment is certainly one of the primary goals of higher education. Are people with disabilities forced to take jobs they are not satisfied with because they need to pay off loans or because a counselor forced them into a specific path of study and career? Are some people with disabilities completely forced out of college and into entry-level jobs because they cannot afford college?

Summary

The Higher Education Act, as currently implemented, contributes to the barriers students with disabilities face. By gathering data directly from students we have uncovered steps that may help bring the vision of the law to fruition. The purpose of the Higher Education Act may be more fully realized by increasing the provision of student financial aid, accessible buildings and materials, student support services, and early outreach and transition planning to those with disabilities. We encourage lawmakers and researchers to learn from the stories youth share in this report and to act quickly to enhance their access to postsecondary education.

Appendix A

Acronyms Used in This Report

ADA: Americans with Disabilities Act

ADD, ADHD: Attention Deficit / Hyperactivity Disorder

ASL: American Sign Language

BVR: Bureau of Vocational Rehabilitation (refers to state-level vocational rehabilitation agency - see VR)

COBRA insurance: Consolidated Omnibus Budget Reconciliation Act of 1985 (COBRA) requires employers to permit most laid-off or fired employees to purchase continued medical insurance for a period of time

DD: Division of Developmental Disabilities

DOR: Department of Rehabilitation (refers to state-level vocational rehabilitation agency - see VR)

DSS: Disability Support Services office on college or university campus

DVR: Department of Vocational Rehabilitation (refers to state-level vocational rehabilitation agency - see VR)

EOP: Educational Opportunity Program, for students who need special academic assistance and financial aid (See TRIO Programs)

FAFSA: Free Application for Federal Student Aid

GEAR-UP: Gaining Early Awareness and Readiness for Undergraduate Programs – encourages middle and high school students to prepare for college

GPA: Grade-Point Average

HEA: Higher Education Act

ILC: Independent Living Center

JAWS: Job Access with Speech (screen reading program for visually impaired)

LD: Learning disability, learning disabled, learning differences

MA: Masters of Arts degree

NCD: National Council on Disability

NCD YAC: National Council on Disability Youth Advisory Committee

OTC’s: Over-the-Counter medications (non-prescription)

Sallie Mae: Corporation providing student loans through the Federal Family Education Loan Program (FFELP).

Section 504: Part of the Rehabilitation Act of 1973

SSA: Social Security Administration

SSA PASS: SSA Plan to Achieve Self-Support (additional, small savings account, which SSI recipients may apply for)

SSI: Supplemental Security Income

SSDI: Social Security Disability Insurance

TBI: Traumatic Brain Injury

TRIO: Programs funded through Title IV of the Higher Education Act that help students overcome class, cultural or economic barriers to higher education. Examples: Upward Bound, Talent Search, Educational Opportunity Centers, and Ronald E. McNair Post-Baccalaureate Achievement programs.

VR: Vocational Rehabilitation (refers to state-level agency)

NCD.gov

National Council on Disability

An independent federal agency committed to disability policy leadership since 1978

Students with Disabilities Face Financial Aid Barriers

Summary