What You Need to Know About College as a Student with a Disability

The transition from high school to college can be both a scary and exciting time for every student. College is a whole new world, and unlike anything most students have yet experienced.

 

Before heading off to college, students have questions and concerns about their future. Most students probably wonder about their major, whether they will like the school they have chosen, and what their new friends will be like, but for students with disabilities, the questions can often be a little more complicated.

 

Students with disabilities may wonder about accommodations, accessibility, services and supports, and getting help with everyday needs. And these questions may not be easy to answer.

 

As someone who’s a former college student, and an individual with a disability, I wanted to share some of the things that I wish I had known freshman year in hopes that it may make your transition a little bit easier.

 

Self Advocacy Is Key:

Growing up, it was typically the responsibility of your parents, teachers, or other administrators to make sure you got the accommodations and supports you needed to be successful in school. But, in college, it becomes primarily your responsibility.

 

Self-advocacy is always important but becomes especially essential when navigating college. College is often the first time students have lived away from home, and it is important to remember that you are your own best advocate: there are lots of supports in place to help you be successful, but you have to be proactive and reach out so that the people around you know what you may, or may not need.

 

Most schools have Offices or Departments of Disability Services in place to help students with disabilities get the accommodations they need, such as note-taking support, extra time on exams, or any other reasonable academic accommodation, but nobody from the office is going to seek you out, especially if they don’t even know you’re there.

 

Make a point to become familiar with the services and supports that exist on your campus. Talk to the disability support staff to work on a plan for your accommodations to help ensure success from day one. You are in college now and, like your peers without disabilities, there are still people there to help you, but for the most part, you are in the driver’s seat now!

 

The Laws Are Different:

K-12 education for students with disabilities is mandated under the Individuals with Disabilities Education Act (IDEA), this means that students with disabilities are entitled to public education and that it is the responsibility of the school to see that all students are getting an appropriate education. Colleges don’t fall under IDEA, and therefore, are not required to make accommodations to the same degree as the public school system.

 

In college, students with disabilities are protected from discrimination, such as inaccessibility of buildings, under the Americans with Disabilities Act (ADA). Schools must provide reasonable accommodations such as notetakers or extra time on exams, but they don’t have any obligation to modify coursework to accommodate students with disabilities or provide additional supports such as assistance with personal care or activities of daily living to ensure a student is successful.

So, if you are, for example, a wheelchair user who needs help to get in and out of bed or perform other daily activities, the ADA requires your school to provide you with an accessible dorm room, but there is no legal obligation to provide you with an assistant or other types of personal care support.

 

This is important to know because it means that you will need to set up the supports you need on your own before you head off to school. Some schools have programs to help students with personal care needs, but this is not a requirement for all schools. Look into what your school offers to figure out what kind of supports may be available.

 

For more information about the difference in laws governing K-12 education and college check out the resources below:

 

https://umaine.edu/disability/accommodations-high-school-vs-college/

 

https://www2.ed.gov/about/offices/list/ocr/transitionguide.html

 

https://www2.ed.gov/about/offices/list/ocr/docs/auxaids.html

 

 

It’s Okay to Reach out for Help and Support:

If you’re feeling overwhelmed, or struggling more than you thought you would, there is absolutely no shame in asking for help. Mental and emotional well-being is just as important as physical health, and academic support.

 

Most colleges have a variety of services to support students from health centers, to counseling and other mental health services, and wellness programs, in addition to academic supports. Take advantage of the support and community that exists around you, and don’t be afraid to reach out.

 

Additionally, there are lots of groups and activities on college campuses, and many colleges even have organizations run by and for students with disabilities. These organizations may or may not be support oriented. Many of them may just be social groups, or groups focused on advocacy and activism.

 

Whether or not they are disability focused, student organizations and extracurricular activities can be another great place to find support in college.

 

 

Transition Is Not One-Size-Fits-All:

Everybody is unique, which means that everyone’s experience in transitioning from high school to what comes after will look, feel, and be, very different. Whether you’re planning to go to school far away, attend college close to home, or do something else after high school, it’s important to remember there is no right way to transition from high school to beyond.

 

Whatever you decide to do after high school graduation, focus on making sure that it’s the right option for you, rather than worrying about whether it’s what other people expect.

 

For more information you need to know,  check out the topics below:

What You Need to Know About Preventative Care and Disability
What You Need to Know About Sexual and Reproductive Health and Disability

Transition Is…

 

Sometimes, unexpected or scary but also real and exciting

 

There are specialty clinics and hospitals throughout the country to address the unique needs of children with disabilities like cerebral palsy, but the same is not true for adults. Once people with disabilities reach the age of 18 or 21 they often have to stop seeing their pediatric providers, only to find there is no adult provider to take their place.

 

This is a major issue that affects young adults and adults with disabilities throughout the country, and contributes to a range of health inequalities and other issues. As we have addressed before, transitioning from pediatric care to adult care can be particularly difficult if your new doctor has little to no familiarity with disability.

 

Adults with disabilities need access to the same care as other adults, but they also need providers who are familiar with the unique needs that may come along with disability, and that is when young adults with disabilities can feel as though they’ve entered a void. However, one UCP affiliate is working to bridge that gap in a particularly creative and comprehensive way.

 

UCP of Minnesota/Gillette Specialty Children’s Hospital is the home of Gillette Lifetime, a clinic for patients with lifelong disabilities such as cerebral palsy and spina bifida who are ages 16 or older.

 

Kathy Lindstrom, an Advanced Practice Registered Nurse, at the Lifetime Clinic, says it grew out of an unmet need in the community.  Lifetime Clinic’s Transition Program started as, “a grassroots movement put together based on patient needs. “

 

Kathy Lindstrom Advanced Practice Registered Nurse, at the Lifetime Clinic

Kathy Lindstrom Advanced Practice Registered Nurse, at the Lifetime Clinic

 

 

Easier, with the right resources and support

 

The services at Gillette Lifetime Transition Clinic merge medical needs with the unique psychological and social needs of transition-aged young adults with disabilities. As Lindstrom explains “everything seems to change when patients reach the late teenage years; it’s not just medical, but in all aspects of their lives.”

 

Lindstrom says, “Legal decision making becomes an issue, [so does vocational] planning, post high school planning and discussions about future living arrangements.  Parents are bogged down with meeting the challenges of daily life, and sometimes it can be hard to develop a vision for the future… and so transition sneaks up on families.”

 

Parental involvement in the process often shifts at this stage, so it’s also important to prepare both parents and young adults for this change.

 

Transition is not a simple process that happens overnight, or automatically, on a patient’s 18th birthday. Lindstrom understands that it can be hard for patients to come to the clinic for the first time, as many of them have had the same providers for their entire lives, and it can be hard to let go.

 

Lifetime makes this transition a little bit easier by allowing patients to transfer some care to adult providers, while continuing to collaborate with other specialty providers for other aspects for a period.

 

During their first visit to the clinic, patients meet with Lindstrom and her colleagues to discuss transition, and outline the issues that are most important to them. These appointments are conversations, not exams, and take place in a conference room, as opposed to an exam room. The appointment gives patients, and their families, an opportunity to discuss any questions or concerns they may have, and to get a feel for the services available at Lifetime.

 

 

About choices, and coordination

 

Lifetime is focused on specialty medical needs, and is not a primary care facility. Lindstrom offers the following advice to any individuals with disabilities looking for primary care providers:

 

  • Meet with the family Primary Care Provider (PCP) and talk about the potential of becoming a patient. If the doctor already sees the rest of the family, they might be a good start for patients with disabilities as well. She encourages patients to integrate into their family’s practice whenever feasible.

 

  • Arrange an advanced meeting with the PCP and see how accessible the facility is before becoming a patient in the practice.

 

  • If at first you don’t succeed, try try again. Lindstrom cautions that you may not click with the first provider you meet with, but that doesn’t mean you won’t find somebody who works for you.

 

  • Your insurance will affect your options for a PCP, so remember to check first to make sure your preferred provider is covered!

 

Lindstrom also encourages primary care providers to connect with a patient’s specialty care providers. Gillette operates a telehealth triage line for all patients and their providers, regardless of age. If a primary care provider is unsure of how to treat a patient, they can reach out and communicate with other members of the patient’s care team.

 

In addition to medical care, Gillette Lifetime supports patients with the social aspects of transition such as recreation, community integration and helps prepare them for changing relationships with their family and friends, even giving them space to talk about the potential of romantic relationships.

 

Transition is difficult for every young adult, but when you have a disability, you may not know where to go, and you may have a unique set of questions that you feel like no one can answer, which is why transition clinics like Gillette Lifetime’s Transition Clinic are so important.

 

Learning more

 

There are several clinics that specialize in current medical recommendations for young adults with cerebral palsy throughout the country.

 

If you are located outside of Minnesota or the Midwest, and would like to see if there is a transition clinic near you, please be sure to check out our latest guide on healthcare for adults with cerebral palsy and related disabilities for clinics and additional resources that may be helpful in the transition from pediatric to adult health care.

 

Patient with a practitioner at the Lifetime Clinic

UCP of Michigan Staff Invited to Attend Meeting Called by The Pope

Special thanks to Glenn Ashley, retired staff from UCP, for his assistance in working to help put this post together. 

UCP of Michigan’s Public Policy Specialist, Barb Valliere, was invited to attend the U.S. Regional Meeting of Popular Movements (RMOPM), which ran from February 16-19 in Modesto, CA.Part of international movements called by the Pope, the meeting in California brought together nearly 700 leaders from clergy members to grassroots leaders to provide input on a variety of social issues, including: job access and inclusion for people with disabilities, environmental issues, and racism. This meeting was the third in a series of international meetings (the previous two were held in Rome and Bolivia) aimed at bringing together members of the clergy and grassroots activists. For Barb, while the journey to California marked her first time on a plane, as Catholic woman with cerebral palsy it was an opportunity she could not pass up.

Ms. Valliere was one of three people invited from the Lansing, MI area to attend the meeting. Her invitation was a result of her leadership and work in community organizing efforts at the state and national levels. Initially, no one from the area was scheduled to speak, however, an issue with accessibility changed all of that. After requesting to be put in an accessible room, Barb was put in a room that was not accessible for her. The conference organizers were able to rectify the problem and accommodate her with another room. RMOPM asked her if she would like to address the entire assembly at dinner about the problem and her experience as person with a disability.


In her remarks to the assembly, she emphasized the importance of civil rights for people with disabilities. Attendees were reminded that when they plan events and invite people, to make sure to take care of their needs and have the event accessible to all, and to not assume that a space is accessible on word alone. She also encouraged other individuals with disabilities to advocate for yourself to ensure that your needs are met. Ms. Valliere made her point in community organizing fashion, encouraging event participants to move deeper into a  discussion on access and issues that affect the disability community.

 

Information for the blog was taken from movimientospopulares.org‘s press release.

UCP Remembers Jack Schillinger

Gloria_Jack

On January 4, 2017, UCP lost a great friend, volunteer, supporter, leader and advisor with the passing of Jack Schillinger at the age of 96. Jack was the “face” of the Bellows Committee that he Chaired until recently, was Chair of the UCP Board of Directors in 1991, and was member of the Finance Committee for many years. In 2015, UCP honored Jack with the Chair Award at the Annual Conference in Chicago.

Jack was a huge part of UCP, since 1955,
and we can never thank him enough for his dedication to UCP and to the lives of people with disabilities.

Our thoughts and prayers are with the family at this difficult time. Jack’s obituary can be found within his guest book. To add a note of sympathy, give your condolences to the family, and to share your memories of Jack, please visit the Guest Book.

We’re Partnering With The Mighty!

We’re thrilled to announce a new partnership that will bring United Cerebral Palsy’s resources to the front of The Mighty‘s wide-reaching readership. We will now  have a growing home page on The Mighty , and appear on many stories on the site, allowing us to get many more people involved with our organization.

The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness, and disability. It is estimated that 764,000 children and adults in the U.S. manifest one or more of the symptoms of cerebral palsy, and that 1 in 5 Americans live with some form of disability. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges.

We’re dedicated to providing comprehensive support and community for children and adults living with cerebral palsy, as well as other disabilities, and their families. With this partnership, we’ll be able to help even more people.

We encourage you to submit a story to The Mighty and make your voice heard.

Here’s an example of the kind of stories you’ll find on The Mighty: Tommy Hilfiger Launches Adaptive Collection for Children With Disabilities

UCP to Host Mandela Washington Fellow

 

 

 

UCP SMALL                   NMF LOGO

 

 

Contact:                                                                                  FOR IMMEDIATE RELEASE

Ellie Collinson                                                                                     August 8, 2016
ecollinson@ucp.org
202-973-7109

 

UCP welcomes Tobiloba Ajayi as a part of the Mandela Washington Fellowship for Young African Leaders Initiative.

Washington, DC (August 8, 2016) – United Cerebral Palsy is pleased to announce that they have been chosen as a host for the 2016 Mandela Washington Fellowship for Young African Leaders Initiative. Tobiloba Ajayi, a Nigerian attorney and cerebral palsy advocate, will be joining the UCP staff for six weeks in order to polish her leadership skills and foster professional growth as part of her Professional Development Experience.

 

The Mandela Washington Fellowship, a key piece of President Obama’s Young African Leaders Initiative (YALI), equips young African leaders with the opportunity to engage in leadership training, professional opportunities, networking, and community support. Fellows are selected based on their extensive record of accomplishment in promoting and innovating positive change throughout their community in one of the 49 countries in Sub-Saharan Africa. After the Fellows attend a six-week Academic and Leadership Institute and meet with President Obama in Washington, DC, they will join private businesses, NGOs, and government agencies across the United States for an additional six week practicum. Here, the 100 Fellows in the program are granted a unique opportunity to develop a mentorship that will continue to assist them even as they resume their leadership development back home.

 

At United Cerebral Palsy, Ajayi will be working closely with UCP’s Program Department on the creation of international resource and emergency preparedness guides for people with disabilities.

 

To learn more about UCP and the Mandela Washington Fellowship program, visit www.ucp.org or yali.state.gov.

 

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About United Cerebral Palsy

United Cerebral Palsy (UCP) educates, advocates and provides support services through an affiliate network to ensure a life without limits for people with a broad range of disabilities. Together with over 70 affiliates, UCP has a mission to advance the independence, productivity and full citizenship of people disabilities by supporting more than 176,000 children and adults every day—one person at a time, one family at a time. UCP works to enact real change—to revolutionize care, raise standards of living and create opportunities—impacting the lives of millions living with disabilities. For more than 60 years, UCP has worked to ensure the inclusion of individuals with disabilities in every facet of society. Together, with parents and caregivers, UCP will continue to push for the social, legal and technological changes that increase accessibility and independence, allowing people with disabilities to dream their own dreams, for the next 60 years, and beyond. For more information, please visit www.ucp.org.

 

About Mandela Washington Fellowship

The Mandela Washington Fellowship for Young African Leaders is a U.S. government program that is supported in its implementation by the International Research & Exchanges Board (IREX). For more information about the Mandela Washington Fellowship, visit yali.state.gov and join the conversation with #YALI2016.

Join UCP in Helping to Spread Awareness for World CP Day on October 7!

Cerebral Palsy (CP) is one of the most complex and often misunderstood neurological disabilities across the world. CP affects each individual differently, with symptoms ranging in severity, from weakness in the limbs to complete lack of motor function. CP can come in many forms: Spastic (the most common), Ataxic, Syskinetic, or even a combination of types. Common signs of CP can include: a “floppy” appearance (specifically in the limbs), a delay in reaching milestones (like crawling or walking), or other delays.WCPD_CP_Diagnosis_Treatment_USA 

WCPD_2015_What_Is_CP_WORLD

Cultural beliefs are different around the world and for some, having a disability carries a cultural and social stigma. This can often lead to isolation of the individual with CP or shame on the mother.The stigma can have many ripple effects for the family of the person with CP or any other disability. One of the goals of World CP Day is to help make the public aware of CP and to help to end the misconceptions that surround it.

CP is a lifelong disability and there is no cure. Treatment for cerebral palsy can come in a range of different methods. If there are no steps taken to treat it, CP may cause the joints to worsen over time. Treatments can include both physical and occupational therapies.

UCP is proud to be apart of World CP Day on October 7 and the movement to help better understand Cerebral Palsy and the 17 million people worldwide who have it.

World CP “Invent It” Competition Brings Together Designers to Make a “Sponge House!”

“World Cerebral Palsy Day (World CP Day)” is a worldwide project with the goal to change the world for people living with cerebral palsy and other disabilities and their families.  World CP Day is celebrated on the first Wednesday in October, yet events go on year round. This year, World CP Day aims to make a difference in the local communities of those with CP. Each year the initiative introduces different challenges. From 2012-2014, World CP Day challenged engineers and designers to invent a product that would benefit people with CP.

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This past year, the challenge was to create a ‘Sponge House’ that went beyond only being wheelchair accessible. The Sponge House needed to accommodate to a large group of people with CP by having open spaces, soft floors, rounded edges and low surfaces. The idea of the Sponge House came from 6-year-old Sally Garster who lives in England and has CP and wanted a house made from soft materials that would protect her when she falls.

Winners of the 2015 Sponge House challenge are people from all across the globe. The number one winning team is a group from Canada who created A.B.L.E (Access a Better Living Environment). This team came up with a house that includes a lot of open spaces, mobility equipment, soft surfaces, and rounded corners. The next runner up was a product called The Bubble House created by two women in Australia. This house consisted of round surfaces with furniture that is mounded into the ground to prevent slipping and falling. This house also included a soft and sponge-like floor that is soft when impacted by a fall.

Next up was a project called Super Special Living created in New York! Inspired by their son, Garner Oh and his wife designed a house that has gentle curved bars that little hands can easily grasp along with shelves that encourage reaching and pulling to stand (once they have toys on them, of course). With soft padding on the floor and walls and no sharp edges to bump into, Super Special Living is a house that will not hurt you.

CP Wiki Write-athon Offers Cash Prizes for Content

The World CP Initiative, in which United Cerebral Palsy plays an active role, has just launched a Wiki that is devoted exclusively to cerebral palsy. Throughout June and July, UCP and the other organizations which make up the World CP Initiative, will be promoting a CP Wiki Write-athon to encourage people to post content on the Wiki.

About the Wiki

For those of you who are not familiar, the Wiki is an online knowledge base on cerebral palsy and related topics for everyone: people with disabilities, parents, caretakers and professionals in the medical and disability fields. It’s just getting started, so we your help to create and improve content and to spread the word.CPWikiWriteAthon

Join the Competition

The CP Wiki Write-athon competition runs throughout June and July. There are 30 x $500 prizes for the best and most content added – including the best organization page and the best country page.

Spread the Word

Anyone can write about CP and take part in the Write-athon. You can write about services, people, sports, technology, travel, health, employment, education, films, books… any CP-related topic.

Please spread the word:

1.  Share this blog post with your family and friends

2.  Print out and post this write-athon poster at your school, workplace, community center, library or other public places you visit

3. Add this news item to your personal blog or website if you have one

4. Replace your Facebook cover pic with the World CPWikicover for June and July

5. Use the simple template on the wikihome page to create a page about CP in the United States

6. ‘Like’ the World CP Day Facebookpage and share the Wiki updates

Jump In and Add Content! 

As you’re browsing the wiki, remember that it’s fine to add or edit wherever you want. Anything you change or do will show up on the wiki for others to pick up and expand on – and as the site grows you’ll see that happening more and more! In the wiki world we say “Be bold!” because anything you do is valuable. Even if you ‘break’ something, a fix is always just a few clicks away – and somebody will come around to fixing it sooner rather than later. So don’t be afraid to give it a try.