Support for Parents of Students with Disabilities

How parents can help their student transition to college

Approximately 6.7 million students — or 13 percent of all public school learners — received special education services during the 2015-16 academic year, according to the National Center for Education Statistics. Eventually, many of these students move on to higher education and their parents must prepare for that transition. College brings a wealth of new opportunities and greater independence for students with disabilities, along with a different role for their parents. This guide takes a look at some of the biggest differences between K-12 school and college and offers advice on how parents can support their college-bound children and encourage self-advocacy along the way.

High School Vs. College: Top 5 Differences Parents Can Expect

The transition to college can feel just as overwhelming for parents as it does for the students themselves. In addition to legal obligations changing from K-12 to college, parents can also expect their roles in their child’s education to evolve during this time. Knowing these five key differences between K-12 education and college can help parents get a grasp of what to expect.

Lack of 504 Plans and IEPs.

In primary and secondary school, parents work with educators and administrators at the school to develop 504 plans and individualized educational plans (IEPs) that ensure the educational needs of their children are met while in a learning environment. Because colleges are not required to exist under the Individuals with Disabilities Education Act, rules differ.

Students entering college are legally viewed as adults by the institutions, meaning parents do not have any say in how the school acknowledges and handles their child’s disabilities. This is true even if the parent is paying for higher education. At this stage, students must learn how to advocate for themselves and their needs.

The responsibility falls on the student.

As minors, students in high school were not expected to manage accommodations for their disabilities. At the college level, however, the responsibility shifts to their shoulders. In order to receive any type of accommodation, the student must speak with the disability services office, disclose their disability and provide appropriate documentation on the types of accommodations needed. Learners can also go directly to their professors to discuss ways of structuring their participation in the class and assignments to best suit their needs.

Not all college disability services are created equally.

Although every college receiving any type of federal funding must provide accommodations, that does not mean all schools provide the same level of services. Common types of accommodations might include allowing students to use a laptop to take notes, providing a separate, quiet space for taking examinations and allowing audio recordings of lectures.

Some learners require accommodations that go beyond these simple steps. Students who need additional support should speak to the disability services office to learn about existing programs and whether the school is ready and willing to add other types of accommodations that meet specific needs.

Accommodations may [depend/rely] on updated diagnoses.

Just because your child received accommodations based on their disabilities in high school doesn’t mean they will qualify for those same services at the collegiate level. While many colleges used to base accommodations off whatever services a student received in high school, many now request updated diagnoses before signing off on anything.

If the paperwork your child uses to receive accommodations is more than three years old, chances are that a doctor will need to provide new evaluations in order to qualify. While this may sound problematic at first, it’s important to remember that students are still growing and changing at this time in their lives, so a new diagnosis may provide updated information that schools can use to better serve your child.

Parents won’t automatically know what’s going on.

Because students are seen as adults once they turn 18, colleges and universities are not legally required to disclose information about accommodations or services to parents or guardians. Under the Americans with Disabilities Act, the goal is to protect the individual’s privacy. While your child can still decide to share all of this information with you, do not expect to be given information if you call or write the school and ask for it. The child must sign off.

This can feel disorienting for some parents who are used to managing their child’s disability and ensuring they get the best possible care. Instead of seeing it this way, however, consider the benefits of growing independence and self-reliance that allows the students to advocate for themselves and their needs.

Sources: National Center for Learning Disabilities, Understood.org, Simmons University

Expert Advice: Achieving the College Transition

Martha Zeher Special Educator

What are some of the unique challenges that parents of students with disabilities face when transitioning to college?

Often students with disabilities have a harder time scoring well on the SAT and ACT college entrance testing. It is important that students use their 504 plans, IEPs, or psychologist’s testing to gain accommodations in taking these tests. Often the most helpful accommodation is increased time for testing for students with slower processing speed and lower reading comprehension.

If testing isn’t their child’s strength, then I recommend community college as the best place to start. Students entering community college are often not required to take the SAT before the entrance. They will take a placement test and may need to take lower level math or English classes before the college level classes can be taken. This should not be considered a failure, but just a good time to review and prepare for their college-level classes to come.

How can parents best support their children while also helping them gain independence and self-confidence?

Parents can best support the students by helping them to understand their diagnosis and learning to accept and embrace their strengths and weaknesses. Then their kids will be able to self-advocate as they enter college. Students, along with their parent if needed, should meet with the special needs coordinator of the college to request accommodations.

Parents and teachers can coach the student prior to the visit so that the child can self-advocate for accommodations such as extra time, notes provided, signals for discussion monopolizing, and taped lectures. Some colleges even allow students to meet with professors prior to the start of class for a one-on-one talk about their special needs to be successful.

What should parents and their students look for when touring and speaking with prospective colleges?

First of all, students with disabilities should seek a college that has smaller classes and support services available. A good resource for finding colleges is the guide “Peterson’s Colleges with Programs for Students with Learning Disabilities or Attention DeficitDisorders” (available on Amazon). It is often most helpful to find a college program that is more hands-on in nature rather than lecture based. 

When touring a campus, parents and students should go together and make sure all the support services offices and tutoring centers are pointed out. Students must be in a frame of mind to ask for help and support and to use all the extra support services available.

What is your best advice for preparing and transitioning students with disabilities to higher education?

In our county, Howard Community College has a program entitled Project Access designed for special needs students to prepare them for college-level work. I send college-bound students there for one month each summer in their sophomore and junior years of high school. This helps them get used to the college level work, takes them on tours of several colleges, and helps them adjust to the campus prior to their first college year. If your community college doesn’t offer such a program, I highly recommend taking summer classes designed for high school students after sophomore, and junior years of high school to familiarize the students with the campus and reduce anxiety levels.

From my experience of over 30 years, it is best for college-bound students with disabilities to start off living at home and trying one or two community college courses at a time. As they are successful with a couple of classes, they can gradually increase their workload and eventually transfer to a four-year college. The college they are transferring to should be chosen as soon as possible so their community college counselors know which courses can most easily transfer. The gift of extra time is often the best gift we can give our students.

Parents: Your Role in the Transition to College

Parents can do plenty to help their children transition to college without taking over and doing everything for them. The following section takes a look at some of the common steps involved in transitioning from high school to college and how parents can best support and empower their children.

Start planning in high school

Before reaching college, parents can help their children gain valuable skills and competencies that will serve them well in higher education and beyond. Before moving on to college, it’s important to ensure your learner develops reliable study habits, knows how to live independently (including doing laundry, washing dishes, cooking, and managing money), can self-advocate for their needs, and feels confident navigating campus. Students who have already mastered those skills during their high school years can focus more on classwork and making friends once they arrive at college.

Look for colleges that meet specific needs

As discussed earlier in this guide, just because all colleges and universities must provide disability accommodations does not mean those accommodations are created equally. Rather than telling your child where they should go, however, empower them to understand their disability and look for schools that go above and beyond to ensure their success. For instance, learners who need a scribe to help with note-taking should look for schools that provide these, while those who need a single occupancy room rather than sharing space with roommates should ensure the school offers this type of housing. If a student cannot drive, they need a school with easy access to public transportation.

Get to know disability services early

Rather than waiting until they need something quickly, encourage your child to build a relationship with their college’s disability services early on. If you and your child visit the campus for a tour prior to enrolling, make time to stop by the disability services office, encourage your student to introduce him/herself, and learn about the services they provide. These offices are typically quite busy at the start of each semester, so getting accommodations lined up prior to a new academic year helps ensure students receive the care they need from day one.

Look for additional local and community supports

Depending on their specific disability, students may require services not offered by the university. Some learners may need to see a physical therapist regularly while others may need to find a physician who can prescribe appropriate medications to help manage a disability. Because of this, it’s important to ensure the town or city where your student decides to go to college can provide these services. If outside your region, speak with the disability services or medical care offices to get a list of suggested providers in the area.

Help build skills in independence

In addition to building confidence and competencies while still in high school, parents can continue encouraging self-advocacy once their children reach college. If your child calls and asks you to step in on their behalf, listen carefully and compassionately before asking if it’s something they can do on their own. If it is, encourage them to step outside their comfort zone and speak up for themselves and their needs.

Make yourself available, but don’t swoop in

After lovingly raising a child for the first 18 years of their life, it can be hard not to step in whenever things get difficult or complicated. Resist this urge as much as you can, as it will only keep your child from feeling self-empowered in the long run. To avoid feeling like a helicopter parent, try to set up specific times to speak — at least in the first few weeks — rather than calling and checking in every day. You can also use text messaging and social media to send little notes of encouragement.

Sources: Understood.org, American Psychological Association, University of Montana

Teaching Your College Student to Be a Self-Advocate

Self-advocacy serves as an important personal quality that allows individuals to express their needs and ensure that they receive attention. Parents spend most of their student’s childhood and adolescence advocating for them, but college represents a time when learners can break out on their own and start voicing their needs. Parents can begin teaching the basics of self-advocacy from a young age and continue building on those basics as children move through middle and high school.

Make sure your child understands his/her disability.

Students cannot self-advocate for themselves without a thorough knowledge of how their disability affects them, what needs they have in terms of support and accommodations, and how to effectively communicate those needs. Begin communicating these three points early on to help children feel knowledgeable and confident enough to speak out and ask for what they need.

Share helpful resources.

Students don’t always want to listen to instructions from their parents. Thankfully, there are lots of resources written specifically for students that share valuable ideas and tools. Some of the places you can direct them include Self-Advocacy Online, Youth in Action!, and Kids as Self Advocates.

Encourage independence along the way.

If children don’t receive encouragement throughout their lives to embrace independence and self-advocacy, it can feel overwhelming to develop those skills right before college. Work to build these incrementally while still in middle and high school so it won’t feel like a huge leap once they start higher education. If your child uses an individualized education plan (IEP) in high school, encourage them to attend meetings about the IEP so they can learn about support mechanisms.

Model self-advocacy.

Even if you do not possess a disability, standing up for yourself and advocating for your needs is always a good thing. Try to model self-advocacy to your children by making sure they see you identify and voice your needs in a variety of settings.

Give them the space to build skills.

Having advocated for your child for many years, it can feel awkward to step back and not rush in to ensure all their needs are met. But for students with disabilities to experience success at college, they must learn how to manage their lives. When taking a campus tour, encourage your child to stop by the disability services office, introduce themselves, and learn about the support options. Give them the tools to ask questions and gather knowledge rather than doing it for them.

What Can You Do If Your Student’s Needs Aren’t Getting Met in College?

Despite best efforts to prepare your child and instill self-advocacy skills, sometimes professors and administrators do not adequately meet their needs. When this happens, parents must find new ways of handling these situations without overstepping boundaries. Some things parents can do if and when this happens include:

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    Ask helpful questions that provide clarity to the student about how they should proceed and who they need to speak with.

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    Encourage students to meet individually with professors, directors of extracurriculars, or resident directors to restate their needs and look for ways to improve the situation.

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    Remind them of their rights under the Americans with Disabilities Act and encourage them to use their voice to receive all the legal accommodations and support systems mandated by law.

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    Make yourself accessible so the child can talk through the issues and potential solutions, but only provide direction on how they should handle the situation if they ask for it.

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    If attending a college far away from home, ask your student if transferring to a closer school might help them feel more in charge of their path and able to access more support networks.

Support Groups for Parents of Students with Disabilities

As students excitedly head off for college, the culmination of love and care in raising children with disabilities comes to a head. While your son or daughter spends their days in class and making friends, it’s a great time for parents to find support groups with other parents going through the same situation. In addition to sharing experiences, these spaces can also be great for gathering tips on navigating this new phase in your child’s education.

Emotional Support Groups

Plenty of online and in-person groups exist that bring together individuals experiencing similar emotions around this topic to live and learn alongside one another. The Parent Center Hub offers a great example of one type of program. As of 2019, each state has at least one Parent Training and Information program or Community Parent Resource Center that provides a space for fellowship.

Disability-Specific Groups

If looking for support around helping your child navigate a specific disability while transitioning to college, plenty of groups exist. The Autism Parents Association provides just one example of what to look for. Support for Parents of Children with ADD/ADHD is also a great resource, with more than 22,000 members.

National Advocacy Groups

Many disabilities have national non-profit organizations that connect the community and provide support for parents. These groups often exist online and in-person, making it easy for parents to find the right level of involvement based on their needs. CHADD, for example, provides parent-to-parent training and mentoring for those whose children experience ADD or ADHD. The March of Dimes arranges tons of local and national events around cerebral palsy and other brain disorders for parents looking to get involved.

Regional Groups

In addition to the most well-known organizations providing support for individuals with disabilities, plenty of regional and state-specific groups also do incredible work in supporting parents and their children. Parents can do research in their area or check with their local nonprofit management organization to learn about groups making a difference in their communities.

Sources: National Center for Learning Disabilities, Understood.org, Parent Center Hub, National Collaboration on Workforce & Disability