Independent Living

 

MODULE GOAL(S): To be aware of the skills needed to live independently while attending college

OBJECTIVE(S):

  1. To apply for on-campus housing as early as possible.
  2. To learn about other types of housing near campus.
  3. To understand the rights and responsibilities of renting an apartment.
  4. To assess how much help you need to live independently.
  5. To know how to find, hire and manage a personal care assistant.
  6. To understand the special considerations for having a PCA on campus.
  7. To be aware of other resources that can support your living independently while attending college.
 

INTRODUCTION:

So you decided to go to a college away from home. Good for you! Now all you have to do is wait for the big day to come, pack some things, and move. For most students with and without disabilities, it's not that simple. The Self-Advocacy module describes how going to college requires more responsibility. This is particularly true if you are living on your own and have a disability that impacts your ability to do so. To be successful at living independently, there are several tasks you must accomplish and skills you must learn. Eating healthy and doing the laundry you can learn from other sources, such as your Mom. This module will provide you information to find appropriate housing and live independently.

KEY QUESTIONS:

  1. How do I apply for on-campus housing?
  2. Is there other housing near the campus where students could live?
  3. What do I need to know after I find the perfect apartment?
  4. Do I need a personal care assistant (PCA) if I away to go to college?
  5. How do I find a PCA?
  6. How do I hire a PCA?
  7. What do I need to know about managing personal assistants?
  8. What do I do if I have problems getting my PCA to perform the job correctly?
  9. What would happen if your personal care assistant is injured on the job?
  10. Will the college help find and manage my PCA?
  11. Are there any other issues I need to consider about having a PCA while living on-campus?
  12. Can Vocational Rehabilitation (VR) services help pay for housing or a PCA?
  13. Is there an independent living center in the area that could assist you in making housing arrangements or PCA issues?

How do I apply for on-campus housing?

You need to contact the appropriate office in charge of housing as early as possible. On-campus housing is available on a first-come, first-serve basis for any student. Students with disabilities are not exempt from this policy. The number of accessible rooms in student housing varies from college to college. Your being assured one depends on when you apply for housing and after applying, working with the college administration to see what is available. Only if your application for housing is reached on the waiting list will accommodations be considered.

Is there other housing near the campus where the student could live?

Probably. The college may have referral information. If not, check the local newspaper, check bulletin boards, or walk around the nearby neighborhoods. How far from you want to live from campus will depend on whether public transportation is available or you plan to have a car.

Your budget will also impact where you live. Do you have enough for your own apartment, need to share with roommates, or is renting a room the most economical? Also, if you need an accessible facility, it will limit your housing options.

What do I need to know after I find the perfect apartment?

The owner or the apartment manager will ask you to sign a written contract called a lease. It's important to read the lease before you sign it. Make sure you understand what it requires of you as the tenant. When you read the fine print of the lease, a lot of it may be in "lawyer language." It might be a good idea to take someone with you who has done this before and can help you understand the language. If there's anything you don't understand, don't sign the lease, instead take it home and think about it. Here are some things to look for in a lease:

  • How often is the landlord allowed to raise the rent?
  • What are the rules about having roommates? If you're going to have roommates, be sure they read and understand the lease, too. Ask the landlord if your roommates can sign the lease. This is called co-signing, and it makes your roommates equally responsible for honoring the terms of the lease.
  • Check the period of time covered by the lease. Many leases are for a fixed period, say a year, while others are what's called month-to-month.
  • Learn when the rent due date is and the penalties for paying the rent late.
  • How much money must you pay to move in? In addition to the first month's rent, most landlords require money upfront for a security deposit, also called a damage deposit. This money is like a promise to the landlord that you'll follow all the terms of the lease. Assuming that you pay your rent and other fees in full and don't damage the apartment, the landlord will return the deposit to you at the end of your lease. But if you fall behind, or cause any damage, the landlord has your money to fall back on.
  • Which utilities will by covered by your rent payment? Are gas, water, garbage collection, and electricity included? How about cable TV and high speed Internet? If you're going to be paying extra for any of these, remember to figure utilities into your new monthly budget.
  • If at the end of the original lease you don't want to sign another lease for the same period of time, can you rent month-to-month? What are the terms?
  • Finally, before you sign, find out how much advance notice must be given before moving out and see what the financial penalty will be if you break your lease. Be realistic about the commitment you're making by signing the lease.
  • Never agree to rent an apartment on the basis of a handshake with the landlord. Always get a lease in writing so that the terms of your agreement are clear to both you and the landlord.
  • Keep in mind that almost all landlords will do what's called a credit check to see what your history has been as a money manager. The credit check helps landlords see if they can trust you to pay your rent on a steady basis.

Do I need a personal care assistant (PCA) if I away to go to college?

The first step is to determine what activities you need help with. This is called "needs assessment." Go through a list of daily activities, such as bathing and eating, to determine how much assistance you need with each. If you only need a little help such as carrying your tray in the dining hall, you may ask your roommate or a friend to help. However, if your needs are more extensive, having a PCA may give you more reliable help.

How do I find a PCA?

Personal assistance work is often ideally suited to college students' schedules. If you plan to live off-campus and need a live-in personal assistant, the offer of housing in exchange for work is an excellent job incentive. Most colleges have newspapers offered free to students. Also, college campuses are usually covered with bulletin boards. Take advantage of them. Be sure to place ads in departments such as nursing, physical therapy, etc. Often, these students are looking for practical experience. Finally, call the college placement or student employment office, and ask them to post your job opportunity.

If you live in an area served by an  independent living center (ILC), ask the center's staff about personal assistant referral services. Most centers have names and phone numbers of potential personal assistants or offer direct provision of services instead of just referrals. No matter which, it is up to you to screen applicants and train the personal assistant you hire to do your own assistance routine.

Many persons with disabilities think that placing classified ads is the best way to recruit potential personal assistants. They may do so via the Internet or by contacting local newspapers. How long and when you run the ad is up to you. Include the name of the position, a brief description of duties, and telephone numbers where you can be reached. Do not include your address in the ad to protect yourself from being target of crime.

You also might want to give applicants an idea of the hours required and list any needed experience or qualifications (such as a driver's license). Be clear and concise, and try to answer any basic questions an applicant might have about the job. Also, do emphasize job benefits. For example, if you are paying above minimum wage, say so in the ad.

How do I hire a PCA?

All applicants should be screened before you hire them. The first screening step is when an applicant calls to inquire about the job. Here are some suggestions for conducting a telephone interview:

  • Give a brief description of hours, and pay.
  • Be sure to mention that the specific job details including bathing and toileting if that is expected.
  • If the person sounds interested, ask questions such as:
    • Has the person had any relevant job experience?
    • Does the person have reliable transportation and a phone?
  • Ask for the names, addresses, and phone numbers of several personal and work references. You need to call them!
  • Tell the applicant you will call him or her back to schedule a personal interview if they are a finalist for the job.

The next task is to go over each applicant's information, and select those most qualified. Invite these applicants for a personal interview, one at a time. If possible, schedule as many qualified applicants for personal interviews as you can. When inviting applicants for a personal interview, give them your name and phone number. Ask them to meet you in a public place such as the library or an ILC. Don't meet them in your home or dorm room. Ask them to bring any additional required materials (for example, social security number).

Be prepared at the interview to ask them a series of questions. You may want to have a list of questions and ask each applicant to answer all of them. Take notes (or use a tape record) for each answer so you can compare them at a later time.

When you contact previous employers, ask about dependability, performance, and other job skills. One question you may want to ask the previous employer is, "Would you hire this person again?"

Before you make a decision about which applicant to hire, you need to protect yourself from fraud and abuse by conducting a background check on those who you don't know. This process may vary from state to state so ask your local ILC , the state Medicaid agency, or the local police department on how to conduct a background check.

Hopefully, you will have enough applicants to make an informed discussion. Compare your notes from all the interviews and consider the results of any background checks along with inquiries to previous employment and personal references.

After you made your decision to hire the best applicants, formally offer him/her the position. Again, be specific in terms of expectations and you may want to have a written contract that includes both of your responsibilities, salary, work schedules, termination for absences and/or lateness, etc.

Always have a list of emergency PCAs. No matter how dependable your personal assistant is, there may be times when he or she misses work. You can prepare for this ahead of time by developing an emergency back-up system. Keep the names and phone numbers of people you can call to fill in for your personal assistant. Back-up personal assistants may be former personal assistants, applicants who were not hired but seem qualified, family members, and friends. You should have these people come infrequently so that they are familiar with your routine. ILCs can sometimes refer you to back-up personal assistants. Agencies such as Visiting Nurses and Home Health Associations can also be called upon, but their services are likely to be expensive.

What do I need to know about managing personal assistants?

Remember the needs assessment you did to determine the activities you require help with? You can use the assessment to train your PCA. The assessment will make sure that you don't forget any important activities. When you describe each activity to your PCA, be as specific as possible and don't skip any necessary steps in performing the activity. (You may want to write out these steps so neither you nor your PCA will forget them later.) Don't assume that for PCA will fill in a missing step! Encourage him/her to ask any question he/she needs to in order to do the job.

Supervising a PCA requires giving him/her a great amount of feedback. However, how much and what kind of feedback you give depends on his or her performance. In most employment situations, feedback is usually given only when the employee has done something wrong. The idea of frequently checking on how someone does a job turns off many people. Feedback is important, not only about those activities that need improvement, but also what they do right. Remind your PCA the steps in the activity they may miss and that you want them to follow those steps. Be courteous but firm.

For feedback to be most effective, it should be given immediately after the PCA performs a task correctly or incorrectly. In many cases, feedback can be given during the routine. It is not necessary to give feedback about every single item on the checklist, as long as performance is correct.

On the other hand, everyone likes to be told when they do a good job. Being in charge does not mean forgetting that your PCA is a person, too, not just an employee. Having respect for him/her can do a lot more for your relationship than yelling (or passive acceptance.) Treating your PCA with respect can also be the first step in having him/her treat you with respect.

What do I do if I have problems getting my PCA to perform the job correctly?

Here are some strategies for dealing with problems that get out of hand. Talk with your PCA about what's been troubling you. Explain what it is that upsets you. It won't help for your personal assistant to feel defensive; that won't change the situation and is likely to make the problem worse. One way to prevent him/her from becoming defensive is to use statements that begin with "I feel." Your PCA can't argue with you if these are your feelings. Also, try brainstorming ways that the problem could be handled. But don't forget to be firm in dealing with your personal assistant. Make sure he or she understands what's important to you and why, as well as the possible consequences of the behavior should it continue. To summarize:

  • Express your concern immediately, right after the problem.
  • Speak in a calm tone of voice.
  • Tell the PCA specifically what he or she did wrong.
  • Let the PCA know the consequences of his or her action and how upset you are.
  • End by telling the PCA you know he or she will try to do better in the future.

Keep in mind that you are in charge of the activities performed by your PCA. This is part of being a self-advocate. Remember, if something goes wrong, or you are not happy with the way things are being done, it is up to YOU to fix it or change it. You are ultimately responsible for your own routine. If your PCA is not working out to your satisfaction, then try more specific feedback. An honest description of your feelings may remedy the situation, but if you are still dissatisfied, let him/her go. Don't forget, however, that you will need to hire another PCA. This is when a good system of back-up personal assistants is especially useful.

There may be times when the problems become so severe that you may have to end the employment relationship. Process your anger before talking about the problem with the employee. Be calm. Have a back-up PCA ready if the employee immediately quits. Choose a private, quiet place for a face-to-face discussion. Plan what you are going to say. Stay on track during the conversation and try to begin on a positive note. It's possible that he/she will give you notice on his/her own however, it may be sooner than the two weeks you would have liked to have.

What would happen if your personal assistant is injured on the job?

When employing personal care assistants, liability is a critical factor. If you are receiving funds from another funding source, make sure that source also takes care of any liability issues. Ask a representative to explain the liability procedures for you and your PCA, in the event he/she is injured. If your funding source does not cover liability or you are paying your own personal assistant, you must protect yourself because your personal property may be at risk if a liability case went against you. Call your insurance agent and ask if your homeowner's or renter's insurance covers property damage or personal injury incurred by an employee.

An alternative may be Worker's Compensation, which is insurance paid by employers that provides medical care to employees injured on the job. The program varies from state to state and is administered by the state Worker's Compensation Board. It may turnout that Worker's Compensation is cheaper than upgrading your insurance. To find out, simply contact your state worker's compensation office. Many insurance agents can also help with the application process.

Will the college help find and manage my PCA?

No! The college is not in the PCA business and will not find or do background checks on any PCA. However, if your college has a disability support services office, they may have resources for you to explore or they may have access to a pool of students who are looking for employment. Even if by chance they do help find you a PCA, after the initial introduction, managing the PCA is your responsibility.

A good source of information on where to find a PCA is students from upper classes who use PCAs. They should have some decent referrals for PCAs, about who is good and who to avoid.

Are there any other issues I need to consider about having a PCA while living on-campus?

If your PCA is someone from off-campus, he/she will most likely need to have access to the dining hall and dorm at early or late hours, and convenient parking. You should talk with your Resident Advisor, dining hall and public safety staff regarding any security passes your PCA may need along with a parking permit.

Can Vocational Rehabilitation (VR) services help pay for housing or a PCA?

Although VR should be able to help pay for services to help you achieve your employment goal, keep in mind that you must use resources from other federal or state agencies before VR will pay for services. For example, if you already qualify for low-income (Section 8) housing, VR may encourage you to use your voucher to pay the rent provided that you can reach the top of a waiting list for such housing. (Although college students are prohibited from Section 8 housing, a recent law exempted students with disabilities from this prohibition.)

If you already receive PCA services under Medicaid, you will be encouraged to continue to use or apply for PCA services under this program. If you do not receive Medicaid, check with your state Medicaid agency to see if you meet their eligibility requirements for attendant care. Different states have different requirements and attendant care programs.

Also, these services may be subjected to a financial means test; VR will help pay for these services only if you and your family's income does not exceed a certain amount.

Is there an independent living center in the area that could assist you in making housing arrangements or PCA issues?

There is probably an ILC in your area that can help with these issues. Many centers select from a range of services they want to offer consumers in their area, but as indicated previously, all ILCs offer information and referrals and specifically on sources of PCA recruitment. Some will offer you training on PCA management while others serve as the PCA employers if you participate in Medicaid or other government funded attendant care program. Contact your local ILC to learn what services they offer.

ONLINE MATERIALS/RESOURCES:

The Independent Living Research Utilization (ILRU) program is a national center for information, training, research, and technical assistance in independent living. Its goal is to expand the body of knowledge in independent living and to improve utilization of results of research programs and demonstration projects in this field.

ASSESSMENT/EVAULATION:

If you decide to go to college away from home, you will need to think about how to make this happen in addition to adjusting to the academic challenges. What you need to think about will depend on your choice of living arrangement as well as the accommodations you need due to your disability. After reading this module, you should be able to meet these needs by:

  • Knowing when to apply for on-campus housing.
  • Searching for alternative housing near campus.
  • Understanding your right and responsibilities in renting an apartment and signing a lease.
  • Assessing your need for help to live independently and matching your need with a suitable personal care assistant.
  • Finding, hiring, and managing a personal care assistant.
  • Helping your PCA become familiar to life in your college dormitory.
  • Contacting other independent living resources, if needed.

WRAP UP:

The next step is for you to decide if you are going to live away from home while attending college. If you decide this is a good option for you, give it as much thought and planning in making it successful as you would in being academically successful. Living away while attending college is almost as much of a learning experience as going to class. Remember, freedom and responsibility go hand in hand…like doing your laundry regularly.

Dr. Michael Ward coordinates the Transition Special Education Distance Education Certificate and Master's Programs at George Washington University. Prior to this, he was a Research Associate with the HEATH Resource Center on Postsecondary Education for Individuals with Disabilities, the Executive Director of the Arizona Council on Developmental Disabilities and the Director of the National Center for Self-Determination and 21st Century Leadership at the Oregon Health and Sciences University. He administered the Secondary Education and Transitional Services Branch in the U.S. Office of Special Education Programs. Dr. Ward also worked as a vocational rehabilitation counselor for New York State Developmental Disabilities Services and an education specialist for the Council for Exceptional Children. He received a Ph.D. in special education from the University of Maryland.

RESOURCES:

Wells Fargo Bank. (2005). Hands on Banking: Young Adults Teacher's Guide

PCA information was adapted from Ulicny, G.R., Adler, A.B., Kennedy, S.E., & Jones, M.L. (2006). Astep-by-step guide to training and managing personal assistants: Consumer guide. Lawrence, KS: Research and Training Center on Independent Living, University of Kansas

 


This document made possible in part by the support of The HSC Foundation, a Washington, D.C.-based foundation dedicated to expanding access andsuccess in education beyond high school. HEATH is affiliated with The George Washington University Graduate School of Education and Human Development.The opinions expressed do not necessarily reflect the views or policies of The HSC Foundation. No official endorsement by the Foundation or of any product, commodity, service or enterprise mentioned in this publication is intended or should be inferred. Permission to use, copy, and distribute this document for non-commercial use and without fee, is hereby granted if appropriate credit to the HEATH Resource Center at the National Youth Transitions Center is included in all copies.