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The knowledge and skills obtained at vocational or career school, two- or four-year college or university are invaluable. Having a primary immunodeficiency (PI) should not stop you from your career goals. In fact, countless people with PI have amazing careers.

Understanding Your Educational Rights
In post-secondary education, it is your responsibility to notify the school if you need an accommodation, also known as an academic adjustment, due to your primary immunodeficiency.

The school will probably request documentation that proves you have a health condition and the accommodations you are requesting. Possible documentation might be a letter from your healthcare provider in addition to other documentation required by the school. There may be differences between the required documentation and how accommodations are provided at each school, but the ultimate goal is that you receive accommodations that allow you the same educational opportunity as your peers, which may include:

  • Providing note takers due to an absence caused by illness
  • Extended time for completion of assignments or testing due to an absence caused by illness

In providing an academic adjustment, the post-secondary school is not required to lower their academic requirements. The school is also not required to provide a service or program that would result in undue financial or administrative burdens.

If you are interested in acquiring an academic adjustment, contact the Office of Disability Services, or applicable department, during the campus visit and upon being accepted to discuss your accommodations and how they might be provided.

The name of your condition is not disclosed. The information shared with your instructors simply states, “chronic health condition”. If you choose not to disclose that you have a chronic health condition and you do become ill, it will be important to notify your instructors immediately. They understand that illness happens and will typically work with you as long as you have made the effort to communicate with them.

Federal laws, such as the Americans with Disabilities Act (ADA) include requirements and guidelines for how schools should respond if a student’s learning is impacted by a health condition.

Download the IDF School Guide for more detailed information about your educational rights. In addition you can consult the Office of Civil Rights (OCR) division of the U.S. Department of Education, which publishes a comprehensive guide specifically on “Students with Disabilities Preparing for Post-Secondary Education.” This includes the most updated information about this federal law and establishing a Section 504 Plan in a post-secondary school. For more information and to request a copy of this guide, go to http://www2.ed.gov/about/offices/list/ocr/transition.html or call 800-421-3481.

Life and Career Goals
There are so many things to consider when choosing a career. When considering post-secondary education and job training, you will want to ask yourself the following questions:

  • What are my interests?
  • What skills do I have?
  • What do I value?
  • What motivates me?
  • Will my job choice be affected by my PI?
  • What health insurance benefits are available through the company or organization?

You will be investing money, time and energy getting a degree, so it should be in an area that matches your interests, skills, and values. Be sure to think about the future. Consider the physical demands required to do a job for a long time. Research jobs that make the most sense for you.

One of the most important things to consider as a patient living with PI is health insurance. Your career choice directly affects your ability to get health insurance. If you are younger than 26, you are probably covered on your parents’ insurance plan. Doing a little research now about health insurance options can eliminate insurance problems later. Click here for valuable information about health insurance.

Choosing Post-Secondary Education
Which school will be the best for you? You are looking for a program that suits your goals and objectives, but another important factor in this decision is your healthcare needs. First, it is up to you whether you decide to attend a school close to your home or a distance away. As you consider possible schools, check out the medical care providers in that area. Getting treatment for your PI needs to be readily available and, hopefully, convenient. You will be busy attending classes, studying and possibly even working a part-time job. You may not have the time to travel long distances to receive care.

Next, after you have narrowed down the list of schools you are considering, it will be important to discuss healthcare options with your current medical team. Depending upon how far your school is from your current healthcare provider, you may need to find a new provider. Is there a local physician with experience treating patients with PI? Your current healthcare team will probably know a provider in the area and be able to work with you to transfer your care. If you need more help, IDF can help you find a physician. Click here to receive a list of healthcare providers from IDF.

If you plan to live on-campus and receive immunoglobulin (Ig) therapy or other injectable drug, you will need to make arrangements for your product and supplies to be shipped and stored. The Office of Disability Services will be able provide information to you so you can continue to receive your treatment.

Finally, you might be the one to educate the school staff about your primary immunodeficiency. If so, your current healthcare provider and IDF can help. Your current healthcare team can send information about your diagnosis, and you can request or download the following publications from IDF to share with school personnel.

Campus Life
Many young adults with PI choose to live the typical college life in a dormitory or apartment setting with one or more roommates. However, your healthcare provider might want you to have a private room. Whether in a dorm or apartment, on or off campus, with roommates or without, carefully consider your options when choosing your living arrangements.

Advantages for patients with PI living on campus in a dorm or apartment:

  • Convenience - If you live on campus, you can walk to classes, libraries, and cafeterias. You don’t have to waste time and money on driving to school, finding a parking space and consequently avoid the stress that a commute creates. Lowering your stress is always good for physical and emotional well-being.
  • Social Life - You will be around more people and have more opportunities to make more friends. Your emotional well-being will remain positive if you have friends you can talk to, especially if your PI has you feeling a little down. On-campus living offers residential advisors (RAs) that are older students. The RA’s role is to provide support and information to the students living in their unit.
  • Nutrition - Colleges and universities offer meal plans to all students whether they live on campus or off campus. Since you are already on campus, it will be easier to eat a balanced diet when meals are prepared for you.

Here are a couple drawbacks for patients with PI living on campus:

  • Privacy - You will have very little privacy living in a dorm. Most likely, you have to live in cramped quarters and share bathrooms.
  • Questions - If you plan on receiving treatment on campus, you will need to answer questions from curious roommates. This isn’t necessarily bad, unless you run across someone who doesn’t get it. So you need to be prepared to answer all the questions about your illness that you’ve answered before.

If you request a private room, you will need documentation from your physician that states this accommodation and work with Student Support Services and the Residential Life Department to make those arrangements. Remember that requesting a private room might involve disclosing that you have a chronic health condition to the Office of Disability Services and Residential Life Department. Outside of these departments, it is up to you whether you tell anyone else.

No matter where you choose to live, make sure you have an emergency plan. The IDF eHealthRecord includes an In Case of an Emergency (ICE) report. Be sure to determine who will be available to you if an emergency does occur.

For Patients Receiving Immunoglobulin Therapy
If you receive Ig therapy and have friends or roommates that see you infuse, you will need to communicate general information with them about PI and Ig replacement therapy. This will avoid them from thinking that you are a drug user! If you live on campus, you will probably want to notify your RA. Having roommates doesn’t mean they need to see you infuse. You can work with your current healthcare provider and school personnel to help find a place to infuse privately.

Keep in mind that it may not always be necessary to change infusion providers if you are relocating or if you are going away to college. If you are receiving infusions through a specialty pharmacy in a home care setting, you may be able to continue with the same provider. Check with your current infusion provider several months before moving to see if you can continue working with them. If a change in providers is needed, the current provider should participate in coordinating the care and transition to the new provider.

If you are receiving infusions in a clinic or outpatient hospital setting, it will be important to coordinate the care in advance with as much notice as possible. For example, some colleges or universities may not allow infusions to be given in a dormitory and arrangements may have to be made for infusions at the student health center or a local hospital/infusion center. Additionally, the receiving clinic will likely need to get a new insurance authorization to provide care. Failure to obtain a new authorization could result in denied claims or delays in therapy which could impact your health.

Vocational Rehabilitation Programs
Vocational Rehabilitation (VR) is an eligibility program designed to assist people with disabilities to obtain, regain or maintain employment. This program assesses plans, develops and provides VR services to eligible individuals with disabilities, consistent with their strengths, resources, priorities, concerns, abilities, capabilities, interests and informed choice.

To find out if you are eligible for VR services, an individual must:

  • Be an "individual with a disability," meaning a person who: (1) has a physical or mental impairment which constitutes or results in a substantial impediment to employment for the individual; and (2) can benefit from VR services to achieve an employment outcome.
  • Require VR services to prepare for, secure, retain or regain employment.

If you receive Supplemental Security Income (SSI) and/or Social Security Disability Insurance (SSDI) benefits, then you are presumed to be eligible for VR services leading to employment, if you plan on getting a job. A student with PI may be eligible to participate in their state VR program, depending on the diagnosis and level of disability as described by limitations of functional capacities.

Overview of the steps of the vocational rehabilitation process:

  • Application - An individual will be considered to have submitted an application when he or she requests VR services, and provides sufficient information for the VR agency to determine eligibility.
  • Eligibility - This is to be determined within 60 days of application unless the VR counselor and individual agree to an extension.
  • Services – For eligible individuals, a Plan for Employment is jointly developed between the VR counselor and the individual ensuring that the individual is informed of their choices available. This plan serves as a road map of services needed for employment. Possible services might be: Vocational Evaluation Assistive Technology, Counseling and Guidance, Educational Assistance, Personal and Work Adjustment, Prosthetic and Orthotic Devices, Transition Services, and Job Training and Placement.
  • Employment – When the individual finds employment, the case remains open for a minimum of 90 days to ensure success on the job.
  • Successful Rehabilitation – The case is closed due to the successful employment of the individual.
  • Post- Employment Services – If issues arrive and/or minor services are required after an individual case is closed, they can still be provided in Post-Employment Services.

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