Independent Living Institute


Obtaining Personal Assistance

by Pamela ES Cavallo, M.S.W., C.S.W.

Chapter 18 from Multiple sclerosis: a self-care guide to wellness / edited by Nancy J. Holland Ed.D. and June Halper.M.S.N., R.N., C.S., A.N.P.Copyright 1998 by Paralyzed Veterans of America, Inc., ISBN 0-929819-09-8

Considering Independence, Dependence, and Interdependence

One thing that is cherished by most people is their independence. Most people feel that adulthood doesn't begin until a measure of personal freedom has been established. Of course, no one is entirely free or totally independent - nor would we want to be. As social animals, we are really interdependent - and happier for it.

Still, any threat to independence is serious. In the face of major changes in life, being able to remain in your own home can be key to retaining a sense of controlling your selfhood, your independence. Fortunately, many services can be provided in the home - depending on the need, the availability, and the cost. Many services can make remaining in your own home easier - for example, nursing; physical therapy; rehabilitation; counseling; and household cleaning, chores, and errand services. One of the most valuable services could be a home care attendant or personal care assistant. Such a service may be the final link in your plan to retain your independence.

Determining Your Need for Personal Assistant

First and foremost, you must decide what you want to do. Although it's a good idea to involve friends, family, and professionals in assessing your needs, remember that you are your own best expert. Some things you want to do may no longer be physically possible, but perhaps you can participate in other ways. For example, if you love to cook, it may be difficult to see someone else doing it. Perhaps you can find pleasure in planning your meals and watching as your assistant cooks from your recipes.

Assess your situation.
This includes changes in your physical condition and living environment. To get the broadest perspective, ask for help. Involve family members and close friends. Seek professional advice as well. Write a self-assessment, then have someone you know well read it and give you his or her reaction.

Know thyself!
Knowing your own personality and style will help you find what you want in an attendant. Are you chatty or quiet? Intellectual or artistic? It's best to find an attendant who fits your personality as well as your needs.

Tips for Conducting a Needs Assessment

Preparing for Recruitment and Selection

Before you make your first move, there are many things to consider. Be aware that you are planning a new relationship - one of employer to employee. You're the employer as well as the supervisor, evaluator, and consumer.

This is a new relationship for both of you.
This is not a parent/child relationship, a student/teacher relationship, a friendship, or a romantic affair. There may be ingredients of these relationships in your new venture, especially as it develops over time, but the basic fact remains that you are the employer. As such, you must remain in control.

This is a very special relationship.
For many people, it will be the first of its kind. It is usually essential - even vital - for survival and extremely personal. Therefore, you must define it clearly, especially in your own mind, from the outset. Your definition should take into account the characteristics of multiple sclerosis, such as fatigue and relapse/remitting patterns, and the uniqueness of your situation.

Describe the job in writing.
This is essential. Everyone lives in different circumstances and has different needs. One person may only need help getting up, transferring to the bathroom, and dressing, while another may need full personal hygiene assistance, from bathing to dental care to total toilet help. The job description should include the following elements:

The job description should include other requirements as well, such as any need for travel, the expected daily routine, and any occasional but predictable routines, such as business travel outside the home. If you're not using an agency that attends to these details, you should list benefits. The amount of remuneration and method and frequency of payment should be negotiated, agreed upon, and listed as well. All legal requirements must be met, including withholding income and Social Security taxes.

Finding and Interviewing Applicants

Once you've established your plan, the next step is to decide whether you want to hire your assistant privately or through a home care agency.

Getting the word out.
The first step is to get the word out that you are looking for an attendant. Sometimes it's no more complicated than that. Ask your friends and acquaintances to help spread the word. This primary form of networking works especially well in small communities, where interactions are regular, personal, and face-to- face.

Using your personal network can enhance your sense of being supported by your community. But when you rely on word of mouth, you need to check that the information being imparted is accurate and current.

If you live in a city or other metropolitan area, frequent personal contact may be impossible, but formal networking among organizations, agencies, institutions, and advertisers is viable. So many resources for people with disabilities have appeared in recent decades that the sheer number of organizations can seem overwhelming. Both the National Multiple Sclerosis Society (NMSS) and the Paralyzed Veterans of America (PVA) can be extremely useful.

If other avenues are not producing results, consider advertising in the daily paper. Also consider free neighborhood news and advertising weeklies, community bulletin boards, college newspapers, and local church bulletins. Some people have used the Internet with good results. You could also put a notice on the board in an independent living center (ILC). ILCs maintain a registry of assistants with a wide variety of skills.

Prepare a checklist based on the most important requirements in the job description that you can use to screen prospective candidates. There's no need to be elaborate at this stage. The checklist should be simple enough that another person can help you, if you have someone to assist you in this process. The list should also be short enough to handle over the phone.

Interviewing. Choose the setting.
Hold the interview in a comfortable, accessible place that is private and free of interruptions and distractions. If you're worried about your privacy or security, find a neutral location.

Create a comfortable ambiance.
Try to set a relaxed, welcoming tone. Help applicants to feel comfortable sharing information about themselves.

Keep good records.
Write down all the essentials - basic identification data, telephone number, and address - as well as your impressions and observations.

Make alternate selections.
You may have to find more than one person, because your first choice could get sick or need time off. You may also need holiday or vacation coverage.

Consider inviting a third party.
You may find the presence of a third person to be helpful. That person could help you to remember critical questions and to recall responses. You can also see how well the applicant gets along with family members who share your living quarters.


Formalize the decision.
This enhances the employer/employee nature of the relationship. At a minimum, if you are not screening through a health agency, get:

Consider backup attendants.
Some attendants may prefer part-time or intermittent assignments, while others may wish to acquire experience. These people are good candidates for backup attendants.

Be clear that you must get and keep these records.
Be clear that you will check references. Be clear that you will adhere to a probation period (usually 90 days). Be clear that you will supervise and perform periodic evaluations.

Getting Started

You may find a checklist helpful, especially at the beginning. Have you established and agreed upon all the necessary terms and conditions? Have you discussed hours, a regular schedule, predictable variations in the schedule, time off, the pay schedule, the end of probation, periodic evaluations, and pay increases?

Ending the Relationship

The time may come when the relationship must be terminated. The most important thing to remember is that it's to everyone's advantage to end on a positive note. Even if your emotions are mixed, try to find a bright side. If nothing else, it was a learning experience.

Helpful Hints

Keep your focus.
Always remember that your goal is to keep as much independence as possible.

Your attendant has his or her own life.
Respect it, take an interest in it, but do not invade the individual's privacy.

Treat your attendant with respect, consideration, and dignity.
Say "thank you" - and mean it.

Be clear in your communication and always check for comprehension.
This step can be especially vital if you are dealing with people whose first language is not your own.

Stress can occur on both sides.
Be forgiving of other people's preferences and differences.

Be aware of other kinds of services,
such as home health care or visiting nurses, which you may be eligible for and able to afford. The home attendant need not be a total substitute for the trained and technical help that you need.

Table: Help at Home

Needs Assessment

Use this worksheet as a tool to help you and your family identify your needs and how they will be met. Sort out needs first. Then fill in names. You may have more than one name for some needs. Be very specific regarding medical needs as some can only be met by a trained person. Keep in mind that needs will change as your condition changes. Reassess from time to time.

List of Needs Who will help?
Self Family Member Friend (volunteer)/
Companion (paid)
Heath Aide Nurse/
Dust furniture            
Make beds            
Meal Preparation            
Dish washing            
Record keeping            
Grocery shopping            
Letter writing            
Administering medication            
Personal Care            
Hair care            
Nail Care            
Bowel program            
Bladder Program            
For self            
For children/others            

Help at Home

Job Description

Instructions: Do a working copy first, so you have time to think through the details and get input from others in your household.

A. Job title This should reflect the major emphasis of the job. Personal care? Housekeeping? Other? Be flexible.

B. List of major duties: Spell out what you need. You may think mopping and vacuuming are "light housekeeping," while someone else thinks "light housekeeping" means tidying up. Do you plan to go shopping yourself with someone to drive and carry for you? Or do you plan to send your helper with money and a list? Remember, "Assist in shopping" could mean either one.

Personal-care issues also need specifics. Do you need help toileting? Do you bathe alone but need help transferring in and out of the tub? Use your Needs Assessment as a reference.

C. Hours: Include expectations regarding holidays and weekends.

D. Requirements: Include all your personal "must have's" such as a driver's license, able to lift 150 lb. person, willing to be bonded. Also list language needs, smoking preference, and if you have pets or children.

E. Experience desired: Think through how much direction you feel willing or able to give. Don't discourage the right person by making requirements too high. On the other hand, don't discount the value of experience. Do you want someone with First Aid certification or training in transferring? (When you check references, ask about experience your applicant claims.)

Help at Home
Sample employment agreement

The purpose of the agreement is to confirm the terms you and your employee have established. It is not a legally binding contract. It is a tool to maintain clarity in the relationship. You might want to re-examine it monthly and make changes that feel right for both of you.

Date of Contract:  
Job Title:  
Specific Duties:  

Hours:   M_____  T_____  W_____  Th_____  F_____  Sat_____  Sun_____

Holiday Policy:  

(Hourly, Daily, Weekly, Monthly)
Payment Schedule:  
(Specify, for example, every Friday at end of day.)
Personal Requirements: (For example, your smoking policy, phone usage, visitor policy. Also list personal requirements of your employee; for example, "must leave every other Friday at 4:00.")

Employer Signature:  
Employee Signature:  

(Make copies for use when interviewing a job applicant.)

Social Security Number:  

Name: Telephone: Relationship: