TAKING CHARGE: A Hands-On Guide to Personal Assistance Services

Initial development, revision and publication of this manual was made possible through a grant projects funded in accordance with goals established by the Ohio Developmental Disabilities Council.

You have permission to copy material in this manual for your own use if proper credit is given. Duplication cannot be used for profit or gain. If you plan to make a significant number of copies, the Ohio Developmental Disabilities Council would appreciate notification so that distribution can be better tracked.

Second Edition, Revised: January 2005

For additional copies of this book, or to obtain this book in alternate formats, contact:

Ohio Developmental Disabilities Council
8 East Long St., Ste. 1200
Columbus, OH 43215

Toll free (800) 766-7426
Voice (614) 466-5205
TTY (614) 644-5530
Fax (614) 466-0298

www.ddc.ohio.gov

Throughout this book, the following acronyms are used:
PA = Personal Assistant
PAS = Personal Assistant Services

ACKNOWLEDGMENTS

This is the first revision of “Taking Charge: A Hands-On Guide to Personal Assistance Services.” The original manual was a product of the Ohio Personal Assistance Services (PAS) Coalition, a diverse group of PAS consumers, family members, service providers, and representatives of governmental agencies brought together through the PAS Project of the Ohio Developmental Disabilities Council (ODDC). Coalition members shared a common interest in improving and increasing PAS options for all.

This current revision is a product of Linking Employment, Abilities & Potential (LEAP) through the PAS Cooperative Project of the Ohio Developmental Disabilities Council. Revisions are based upon changes in PAS systems, consumer comments, lessons learned from PAS Management Seminars conducted throughout the state, and using the manual as a teaching tool.

LEAP and the PAS Cooperative Project Planning Committee would like to acknowledge the following individuals and organizations:

— The members of the ODDC, for their vision.

— Fatica Ayers, ODDC staff member assigned to the Project, for her patience, guidance, and support of advocates in their quest for development of expanded, self-directed, community-based personal options.

— Gary Court, CPA of Perrysburg, OH for reviewing the tax portion of this manual for accuracy.

— Cathy Ludlam and the A. J. Pappaninou Center on Special Education and Rehabilitation: University Affiliated Center, for allowing us to reproduce portions of their manual, “Getting from Here to There: A Manual on Personal Assistance”.

Most of all, a special THANK YOU goes to Dan Loyer, Donna Prease, Alma Krekus, and all the PAS consumers, their family members, former PAS Coalition members, and advocates who reviewed and provided input into the manual and it’s revision. Your input and suggestions were extremely helpful and valuable.

INTRODUCTION

Working with a personal assistant (PA for short) is probably one of the scariest things you can do. The thought of becoming an employer and hiring someone yourself or having to work with home health agencies and their red tape can be overwhelming. You are inviting a stranger into your home and, depending on your situation, giving another person access to your body, your money, your possessions, and intimate knowledge of your personal life. There are so many things to consider: “What kind of help is available? Where do I find the help? How do I pay for it? Where do I begin?”

This manual is designed to make the process of setting up your own PA support system as easy and painless as possible. It is filled with hints, points to ponder, and tidbits of information. It is our wish that the information and checklists included will help you in your search for a personal assistance services (PAS) provider, whether it be an employee of an agency, a privately hired individual, or a family member. We do not profess to have all the answers but hope that the following pages will help you raise the necessary questions.

Many of the examples we give are based on services available in Ohio. Check to see whether comparable services exist in your state. Checklists, suggested job descriptions, sample want ads, and other examples included in this manual may be copied and adapted to meet your own individual needs. Also included are examples of some government forms. These forms change from time to time, so it is important to contact the IRS or the appropriate office in your state to make sure that you have the most recent information. (In Ohio, contact the Department of Taxation; in other states, it might be Commerce or Labor or Revenue.)

And please remember: Even though you may hear stories about problems working with a PA, there are many, many success stories as well. We hope that, with the help of this manual, your PA experiences will be positive and rewarding! GOOD LUCK!!!!!

••• Hint: Your circumstances are unique! Write in the wide margins of the manual, underline or highlight useful sections, and cross out others that are of no use to you. In other words, make it your own personal guide to PAS management.

WHAT ARE PERSONAL ASSISTANCE SERVICES?

The World Institute on Disability (WID) defines personal assistance services (PAS) as: Those services provided to assist people in carrying out tasks they would typically perform for themselves if a disability were not present.

“Traditional” PAS include hands-on activities such as bathing, dressing, help with toileting, and transferring between the bed and wheelchair or wheelchair and car. Other typical forms of assistance involve housecleaning, doing laundry, shopping, and driving the person with a disability.

Recently, people have come to understand that personal assistance services include any support a person needs to maintain his or her independence. This support may include assisting a parent with child-related tasks (such as diapering, dressing or feeding), helping an individual with money management, or interpreting for someone who’s speech or behaviors may be hard to understand.

Personal assistance services cut across all category lines. PAS may be used not only by persons who have the more familiar physical disabilities but also by those who have age-related disabilities, behavior-related disabilities, vision loss, hearing loss, brain injury, mental retardation, developmental disabilities, or a need for mental health services.

— A person who is blind or has a learning disability may require a reader.

— Deaf individuals may need a sign language interpreter in order to communicate in a predominantly hearing world.

— A person who has a disability involving cognitive or memory-related disability may need verbal coaching or help in establishing environmental adaptations in order to accomplish daily tasks.

— A child with a physical disability may need help with toileting or note-taking during the course of the school day.

— An older adult who does not drive may need someone to shop and run errands.

— A child or adult with a disability that affects behavior may need assistance with re-direction, maintaining a schedule, or problem solving.

These are but a few of the creative ways PAS can enhance the lives of persons of all ages and enable them to more fully live lives of independence and inclusion within their community.

In this manual, we will use the term personal assistant (or, in the appropriate context, employee). You may also hear personal assistants referred to as home health aides, attendants, direct-care workers, helpers, caregivers, and home care workers. (Many of these terms carry a medical or clinical connotation that some persons with disabilities find distasteful or even offensive.)

Meet five Ohioans who use PAS:

Bob, 32, lives in Columbus. He sustained a spinal cord injury as a result of a car accident when he was 23. Bob uses a motorized scooter to get around. He gets assistance in preparing meals, cutting food, cleaning, vacuuming, washing dishes, dressing, using the toilet, and bathing.

With PAS, Bob has been working steadily at a major accounting firm; he expects to become a full partner within a few years. Without PAS, Bob might have to live in a nursing home.

••• “Assistants are needed at home and at work. They could play a dual role of personal assistant and job assistant.”

María, a Utica resident who is now 22 years old, was born without the sense of hearing. She was raised within the Deaf community, where she learned American Sign Language (ASL). When she was 17, an acute illness left her with no usable eyesight. Since then, María has used tactile (touch) signing to talk to her family, friends and PA.

She has begun to learn Braille and makes extensive use of a computer and other devices. She plans to earn her bachelor’s degree within the year. She uses the services of a personal assistant to read and explain materials that are not printed in Braille or have not been scanned into her computer. Her PA also helps to navigate unfamiliar places and to communicate with people she meets in the community, such as teachers and store clerks.

With PAS, María participates fully and independently in her community. Without PAS, María would be dependent on friends for favors, especially basic interpretation, and her schedule would be based on her friends’ free time. It would be difficult to keep up with literature in her field. Simply getting to a job interview would be difficult.

••• “I don’t need a lot of help, but I need somebody with a flexible schedule who can be with me when I need them.”

David, from Marietta, is 51 years old. He was born with significant mental retardation. A paid personal assistant (who happens to have a physical disability) lives with him in an apartment near the downtown area. The personal assistant pays the bills after David reviews them, reminds David almost every day to do certain house-keeping and self-care tasks, and assists him in dealing with changes in his routine, such as periodic adjustments in the bus schedule. At his part-time janitorial job, David is considered very reliable and is well respected by his employer and co-workers.

With PAS, David enjoys the responsibility and dignity of being a full citizen of his community. Without PAS, David might be living in a group home and working in a workshop.

••• “We are working people who want to control our own lives.”

Carla is 42 years old and lives in Kent. She has been diagnosed as having chronic schizophrenia and has been in and out of our state mental hospital system since she was a sophomore in college. Carla’s need for PAS changes dramatically depending on how well her medications are helping her control her symptoms. At one extreme, she may need intensive help with scheduling her day, problem-solving disputes with others, getting around the community, keeping her money safe, and so on. At other times, she only needs someone to drop by for a few minutes each day to help her balance her checkbook or keep important appointments and generally to make sure that she is okay.

With PAS, Carla maintains a home, spends hours each week investigating materials at the public library, and does volunteer work for several organizations. Without PAS, Carla might well end up back in the hospital for an extended stay, not because her medications are not working as they should, but because she no longer has access to the basic, dependable services that help keep her anchored and focused.

••• “We all have a responsibility to make the ADA [Americans with Disabilities Act] real, to say: This is my right. I want you to respect my right. That’s easier to do when you can stand and face people.”

Joe, now 78 years old, has lived in Marion for 53 years with his wife, Mary. Two years ago Joe had a stroke, from which he is still recovering. He receives assistance mainly in dressing (fastening buttons and zippers) and in walking across the room or up the stairs. Getting around town is fairly easy if someone else drives the car and provides an arm to lean on.

With PAS, Joe lives with the people he loves, in the home he and his family built, surrounded by the evidence and memories of his life. Without PAS, Joe would be sharing a room with a stranger, in a nursing home miles away, permitted to keep with him only a few personal belongings.

••• “Some people need help right now to prevent institutionalization.”

[NOTE: Each of these stories is a composite portrait that represents real circumstances rather than a particular individual. The quotations, however, are the words of actual persons.]

GETTING STARTED

The whole process of finding a personal assistant may seem overwhelming at first, so it helps to break it down into manageable steps. Do not let fear of the unknown or pressures from others keep you from moving ahead. Sometimes your family, friends, and doctors may feel that a nursing home is your only option. These kind-hearted people mean well but may not realize that you have options. They may have a vision of what is the safest environment for you however, you may have an entirely different vision for yourself.

You may need help to live independently, but that does not mean that you have to live in a nursing home! Educate yourself and explore your options. In other words, TAKE CONTROL! By doing so, you will make realistic decisions based on fact rather than feelings or perceptions.

Personal assistants can be found in many ways. Sometimes your funding source will be the determining factor. For example, some funding sources may require your PAS to be provided through an approved home health agency. Others are open to you hiring private individuals, including friends or family members. Do your homework to determine how flexible your funding source is and what your responsibilities are.

Remember: Whether you work with a private individual or with a home health agency, there are many good, caring, and reliable personal assistance providers out there! You just need to find the right match for your needs.

And keep in mind that you are offering people more than a flexible, interesting part-time or full-time job. You are offering them the opportunity to grow both personally and professionally. They are being given the chance to see the world through your eyes, a chance that many consider a great gift and learning opportunity.

••• Olmstead Decision: a 1999 Supreme Court decision requiring states to administer services, programs and activities “in the most integrated setting appropriate to the needs of qualified individuals with disabilities.”

DETERMINING WHAT YOU NEED

The first step in your search for a PA is deciding what type of help you are looking for. Be very realistic about your needs, preferences, and priorities. Here are a few questions you may want to ask yourself:

— What do I need help with? How many hours will my care take?

— Do I prefer a male or female? Someone of a particular cultural background or age range? Does it matter? Does it depend on the type of work that particular person may be doing for me?

— Have I considered the pros and cons of hiring a friend or family member?

— How much control do I want to assume over the management of my assistant?

— Do my PA’s need to be bonded? (See information on bonding, page 36.)

— What professional qualifications am I looking for? Do I want someone who has worked with persons with disabilities, or would I rather hire someone with little or no experience whom I can train myself? Would I prefer a person who has completed a training program, such as a State Tested Nursing Assistant or Certified Home Health Aide?

— What personal qualities or habits am I looking to find or to avoid? How do I feel about smoking?

— What are my priorities and how flexible can I be if I do not find exactly what I want?

— Where is the money going to come from to pay for these services and how much control do I have over how it is allocated?

By answering these questions, you will have a more realistic idea of your needs, priorities, and degree of flexibility. (See Needs Checklist in addendum). You will avoid setting yourself up for failure and bad experiences. And you will increase your chances of finding someone who meets your most important needs and who works well with you.

••• Please note: When hiring a PA, avoid discrimination. (See page 22 for more information.)

WHO WILL PAY?

It would be nice to be able to tell you that all people who use PAS are receiving all the services they need. One reason why some are not is money. Either funding is not available or the individual does not know where to begin to look for it. Funding sources do exist and are worth checking into. Some may have restrictions based on factors such as how much income you have, how old you are, and where you live.

Medicaid Waivers are one of the largest funders of personal assistance services. If you are eligible to have Medicaid pay for care in a nursing facility, it may be possible under a waiver to receive PAS in your home instead. In Ohio, waivers are available through the Ohio Department of Job and Family Services, the Ohio Department of Aging and the Ohio Department of Mental Retardation and Develop-mental Disabilities. Since states must reapply for waiver certification periodically, the design and services offered under each waiver may change.

Over the past several years, much has changed in how Medicaid funded PAS can be provided. It used to be that all Medicaid-funded PAS needed to be from a home health agency. This is no longer true. On an National level, Medicaid is urging states to expand consumer-directed PAS options, to the extent that consumers in some states are able to use Medicaid funds to pay for individuals they hire and train themselves to provide PAS. If you are interested in this option, contact the state agency responsible for oversight of the waiver programs.

Other possible sources of funding and support are: Area Agencies on Aging, children services programs (remember that schools are required to provide PAS to children while they are in school), private insurance, state vocational rehabilitation agencies and their various programs, County Boards of Mental Health, and County Boards of Mental Retardation and Developmental Disabilities. Departments or Offices of Veterans’ Affairs frequently offer PAS (“home care”) for veterans who have service-connected disabilities. Sometimes disability-specific agencies such as the National Multiple Sclerosis (MS) Society will have funding available for respite care. If they do not offer funding for personal assistance services, they may know of sources you have not tapped into yet. Organizations that are affiliated with a particular religion are another possible source.

Personal assistance services do not always have to cost you money out of your pocket. Use the barter system. For example, if you have skills in a particular area, such as math or reading, you may be able to tutor or read mail for someone in exchange for help with shopping. You may offer room and board in exchange for assistance. A note of caution when offering room and board in exchange for PAS: make sure your PA has time off, this is not a 24/7 arrangement.

Do not be afraid to be creative! Some of the best matches come out of meeting each other’s needs.

It is possible that your funding will come from several sources. It is also possible that you may be denied funding or services from a particular group. If so, there is usually an appeal process. Sometimes it seems that agencies automatically deny requests the first time around. If you appeal a decision, it may be reversed. Also remember that government systems and the services of community-based organizations change from time to time. What you do not qualify for today, you may qualify for at a later date. Be persistent. Remember the adages: “It never hurts to ask,” “All they can do is say no (and they might even say yes),” and “You’ll never know unless you try.”

••• Waiver: permission to be exempted from a rule or regulation. Under the rules of the federal Medicaid program, all states must offer certain mandatory services. An individual state may also offer certain optional services if it chooses to do so. If a state wants to offer a service that is not listed as optional, it must apply for a waiver of the Medicaid regulations.

••• A list of phone numbers can be found near the end of this manual, just before the Appendices.

MAKING SOME DECISIONS

Deciding Between Hiring Someone from an Agency and Hiring a Private Individual

There is disagreement among persons with disabilities of all ages, about the benefits of using personal assistants who work for an agency. At the heart of the controversy is a trade-off between quality assurance and consumer choice.

Home health aides (persons who have been hired by home health agencies) have passed competency tests given by the agency. A National Home Health Aide certificate is available to individuals who have received training from an approved site. They must also pass the certification exam. (PLEASE NOTE: At this time, Ohio currently does not have a Home Health Aide certification process nor do they recognize the National certification.) All agency and certified home health aides must complete twelve hours of inservice training sessions each year.

Non-agency PAs can be friends, family members, or people responding to your want ads.

If you are in a position to choose, consider both alternatives and make a decision based on your needs. (In some cases, it may be possible to find a PA yourself and have that person hired by an agency.) The chart on the next page lists some comparisons.

Consider your options carefully when making your decision. Think about what is best for you. Ultimately, whether you work with an agency or a private individual depends on you, your funding source, your priorities, comfort levels and management skills.

Deciding What Is Non-Negotiable

Your life is your responsibility. Whether you work with a private individual whom you pay yourself, a home health agency, or even a volunteer, it is important that you take control of your situation.

— Learn what your rights and responsibilities are with the personal assistance provider(s)and funding source(s).

— Be an advocate.

— Know which community organizations in your area can also advocate on your behalf.

— Understand your responsibilities as an employer.

— Most important of all, do not compromise on anything that significantly disrupts your life or puts you in an unsafe situation.

If you need to get up at 5:00 a.m. so that you can get to work on time and your PA cannot get there until 7:00 a.m., find someone else. The same goes if your PA is always late or does not even show up to work.

You are the only one who can ensure that your needs are being met. Do not surrender control of your life to your PA. No matter where the funding comes from, you should be in charge of your own life.

GAINING CONTROL

Working with a Home Health Agency

Choosing to work with a home health agency should not automatically mean giving up control of your life. Granted, you will be part of a larger system, with its own set of rules and regulations, but try to make the system work for you.

First of all, how do you find an agency? Your doctor may recommend one associated with a hospital. Or you can look in the yellow classified section of your phone book. Your best bet is to talk with someone whose opinion you trust, such as a friend, nurse, social worker, or religious or spiritual counselor. You may also want to check with your local Long-Term Care Ombudsman office; an association of agencies or organizations such as United Way, Community Shares, or National Voluntary Health Agencies; or a disability-specific group or social service agency. Disability-specific agencies and groups may be able to give you names of people who have experience with different home health agencies. These individuals may be able to offer valuable insight and advice.

Feel free to interview several agencies to see whether you would feel comfortable working with them. Do not forget to ask for references. When you check with the people who gave those references, ask whether the agency responds to their needs and whether they feel part of the planning process.

The first person you talk to at an agency will be an intake worker, who will take your medical and insurance information at that time and may be able to tell whether you are eligible for any other services. The intake worker will also give you a good idea of what you can expect from that agency. If you do not fully understand what services the agency offers, ask the intake worker to put the information in writing or to send you a brochure.

Soon afterwards, you will be visited by a home health nurse to put together your care plan. This plan will let the home health aides (personal assistants) know what they need to do for you. It is important for you to take charge of this interview!

Let the nurse know what you need and why. Nurses are not mind-readers and may not always know what is best for you. Of course, some of what you want, such as a certain number of hours or particular times of day, may not be available because of funding or staffing restrictions. Be prepared to negotiate and possibly compromise.

Get to know the staffing coordinator in charge of scheduling your assistants. Positive communication is a must! If you make your likes and dislikes known, the staffing coordinator will have an easier time finding the right match. Do not assume that the staffing coordinator has all the information from the intake interview. It may help to keep a notebook with the names of your staffing coordinator, home health aide (personal assistant), and nurse. Other information, such as the best times to call and grievance procedures, should also be kept in the notebook. Please note that staffing coordinators change often so keep up with agency staff changes.

All too often, people call staffing coordinators only to complain. If you like your aide (personal assistant), or you appreciate what a staff person is doing to help you, let the coordinator know. The job of a staffing coordinator is extremely demanding, and a kind word goes a long way.

If you take the time to develop a positive working relationship with the staff, you will increase your chances of having positive experiences with the agency.

What happens if you just cannot agree with your aide (personal assistant) or coordinator? This can be a ticklish and uncomfortable situation. And it happens from time to time. The first step is to try talking out the situation in a calm manner. Keep records of what was said, who said it, and what happened as a result of your conversation. If the issue is not solved by talking to the aide or coordinator, follow the agency’s grievance procedure. Again, keep records of your actions. If you feel that you have tried to be reasonable and the agency is still not providing services you are entitled to, call your state’s Long-Term Care Ombudsman office. Its purpose is to handle and resolve complaints about home health agencies, group homes, adult day care centers, and nursing homes.

The reality is that at some point you might feel the need to switch agencies, either because you cannot get the services you need or because you do not like working with the staff currently available. Do not be shy about interviewing a prospective agency just as you would interview a potential employee. But be careful about firing one agency before lining another one up and take care not to bad-mouth one agency to another! You would be surprised at how long the gossip grapevine is among home health aides! What you say one day may come back to haunt you later.

Working With a “Private Pay” PA

The next few pages deal with finding, hiring, training, and working with a “private pay” personal assistant, that is, someone you hire and supervise yourself rather than going through a home health agency to find.

The first step in hiring your own PA is to make a list of exactly what you expect from a PA. (In this step, you are doing for yourself what the home health nurse in an agency would help you do.) Sample want ads, job descriptions, and interview checklists can help you decide what is important to you. Several examples are included as Appendices. Feel free to adapt them to fit your needs.

After you have decided what you are looking for, it is time to start looking. There are a variety of ways and places to advertise your position. Some cost money, but many are free.

Talk to friends or others in similar situations to find what advertising methods work well for them and why. What works in one area of your city or state may not be available or work well in another area. If you do not have people to talk to, try calling the Center for Independent Living in your area or a local disability-related support group. The group leader can put you in touch with people who would be glad to share their experiences and point you in the right direction.

Want Ads

Newspapers or newsletters are another way of advertising. Some communities have weekly papers that offer ads at low or no cost. Daily papers that reach a larger audience tend to charge more than weekly papers. Most disability-related agencies also have monthly or quarterly publications you may want to consider putting an ad in. When advertising in a daily paper, you may want to consider running the ad Friday through Sunday. Job hunters typically look at ads on those days.

If you run an ad in the General Announcements section and get little response, try putting it in another section, such as Medical, Social Services, or Domestic Help. There are no hard-and-fast rules about which is the best section. It all depends on the type of person you are looking for and the area you live in.

If possible, your ad should include a general idea of the job duties, whether experience is required, pay scale, area of town, and gender preference. (NOTE: Some papers may have restrictions on specifying gender.) Use words that are understood by the general public. Include a method for responding to the ad. SAFETY TIP: Use a post office or newspaper mail box for responses. Do not give out your home address.

A Word or Two About Language

There are two schools of thought about the words that should be used in referring to the position we are calling Personal Assistant.

According to one approach, you should keep it simple. Individuals involved with disability issues will know what a personal assistant is, but anyone else reading the ad may think that you are looking for a secretary. Most people understand the words home health aide or attendant. So pick words your readers already know. By including additional descriptive pieces of information, you will hopefully screen out people who are inappropriate.

The other way of thinking holds that you get what you ask for. You may want to hire a personal assistant so that you can live a more independent, active life. If, however, you advertise for a home health aide or a caregiver, you may find that your job applicants are more prepared to take care of you as a patient than to work with you or for you as an employer.

The words you choose are up to you. For example: one person learned their lesson about choosing words carefully when they advertised a job opening for “Service Coordinator” (which was the actual job title) rather than a “Social Worker” (which is what they were looking for). They had egg on their face when they received countless resumés and phone calls from auto mechanics who had experience in service stations!!!

NOTE: The sample want ads in the Appendix all use “person first” language, that is, language that puts the person before the disability (person with a disability, child with cerebral palsy). Because “person first” language usually requires more words, some individuals choose not to use it in order to cut back on the cost of a want ad.

Bulletin Boards

Bulletin boards are another option. Since you are not limited by cost or number of words, you can write a more detailed description of your position. You can find bulletin boards at colleges, places of worship, libraries, hospitals, drug stores, and supermarkets. Picture the types of people you might be interested in hiring and think about where they would go in their everyday life. If there is a bulletin board at that location, post your notice. Consider it fishing, with your ad as the bait!

Do not forget electronic bulletin boards and computerized databases. Two and four-year colleges have them, as do state Departments of Labor. There is usually no cost, and your listing will be there until you cancel it or the database is updated.

Word of Mouth

Word of mouth is a wonderful way to find help. Talk to your friends, relatives, current and past employees, members of your house of worship, and anyone else you can think of. Describe what you are looking for. Sometimes it helps to be specific about the type of person who may be able to meet your needs. For example, suppose that you need a driver to take you to morning meetings or to get your mom, who has had a stroke, to her morning doctor’s appointments. You can ask your “network” whether they know of people, such as parents at home with school-age kids, who would like to earn extra money during the day while their children are in school.

Other Resources

Some high schools and colleges offer credit for work experience. Depending on your educational background, it might even be possible to make your PA position into an internship, in which you would be the supervisor. It does not hurt to check.

Social service agencies and Centers for Independent Living may be sources of names as well. An ad can often be run in their newsletters. Some people have also found success with church bulletins and college newspapers.

Helpful Community Connections and Natural Supports

The communities we live in are filled with support designed to help everyone who lives there. A trusted teller at the bank (for example, if you have trouble reading or handling money), a reliable taxi service (especially if you do not drive), a helpful neighbor, church parish nurses, good paramedic services, maid services, good friends, and flexible community recreation programs are all examples of services that are already in place. They do not have to be contracted, case-managed, or sometimes even paid for. However, natural supports are critical to people with disabilities who are seeking full lives in their communities. Keep the names and phone numbers of helpful people and services such as these in a handy reference file.

We mention natural supports in this manual because they are often the solution when a personal assistant can provide some but not all of what you need. If a potential assistant can do everything but drive, some existing transportation service may hold the answer. If you really like your PAs, trust them, find them easy to work with, but know that they cannot cook at all, community cooking classes might be an option. When you can find coverage for every day but Sunday, a combination of church volunteers and family members may fill the gap.

Using natural supports often calls for creativity, flexibility, and sometimes a spirit of adventure. They may just be able to make the difference in making personal assistance services work!

••• Dealing with disagreements:

1. Calm discussion
2. Grievance procedure
3. Long-Term Care Ombudsman

••• Suggestion: Focus more on the actual tasks to be performed than on the job title: Adult w/ disability needs assistance w/ bathing, dressing, eating, etc. Early morning. Shaker Heights area. Pay negotiable. 555-4467.

THE HIRING PROCESS

Now that you have several people who sound absolutely wonderful, what do you do? At this point, you have the option of scheduling a face-to-face interview or conducting an initial phone interview. In either case, have a list of questions ready. A sample interview sheet is included as an Appendix, as well as a list of other questions you may want to consider personalizing. A job description should be available to be read over the phone and/or handed out in the meeting. Job descriptions should list the main components of the job. They should be written in words that can easily be understood. When describing job duties, try to use specific action verbs: bathes, cleans, lifts, transfers. Be realistic about the qualifications you need in your PAs. If they need to be able to lift 80 pounds in order to transfer you safely, do not accept anyone who cannot.

Phone Interviews

Phone interviews are wonderful tools because they allow you to pre-screen people and save lots of time. A percentage of your callers will have a problem with some part of the job: The hours are too long, too short, too early, too late; the pay is too low; they do or do not want taxes withheld. Some people think that if you have a disability, the state will pay for any amount of support you need, at any rate of pay you set! If you explain to them that you have limited funds, or that you need to get up at 6:00 a.m. so that you can get to work by 9:00, they may be more flexible. On the other hand, they may hang up on you! If that is the case, count your blessings, because you would not want to work with them anyway!

Whatever you do, do not let the caller talk you into increasing or decreasing the hours, raising the pay rate, or making any other changes that are unsafe or do not meet your needs. If you constantly get the same comment that the pay is too low or the hours too long, you may want to reconsider those items. The bottom line is that you know what you need and what you can afford.

As you talk with the person, ask yourself, “Is this someone who sounds like he or she can work with me?” and “Is this someone I would get along with?” If so, schedule an interview. Give all applicants clear directions to your meeting site and mention anything you want them to bring, such as references, a valid driver’s license, and proof of insurance. Be sure to keep each applicant’s name and phone number in case you need to change the time.

Face-to-Face Interviews

The face-to-face interview is an opportunity for you and your potential employees to get to know each other. Give them a copy of the job description and have them fill out an application. (See appendix B.)

Explain in detail what the job involves, the hours, and when and how much they will be paid. You may want to tell about your disability and how it affects you. Be sure to talk about the details. Do not gloss over the details because you think that it might scare them off. Worse yet, do not assume that because they helped another person at one point, they automatically understand what you need or are talking about.

It is helpful to ask applicants about previous jobs and life experiences. In discussing past jobs, ask what they liked least and best about each one. This information will give you a sense of who the person is. It is also important to ask about goals and expectations for the future. If the person is planning on leaving in a year to enter graduate school or to start a family, you need to know so that you can plan ahead.

According to the Equal Employment Opportunity Commission and the Americans with Disabilities Act, questions about religious beliefs, gender, race or ethnicity, national origin, health, disabilities, sexual orientation, veteran status and age are considered discriminatory.

However, there are ways to check whether these factors will have an impact on the job. For example, if you think that religion may be an issue, you can say something about your own outlook, such as:

“My faith is very important to me. I have lots of religious music tapes that I play all the time, and I like to discuss scripture. Will that make you uncomfortable?”

Be careful of falling into the trap of stereotyping people. Young people do not always change jobs frequently! Not all newlyweds rush to start a family! Older persons are not all close-minded sticks-in-the-mud! People from other cultures do not automatically consider disability to be a pitiable, shameful condition! Get the idea?

Do not be afraid to ask for examples of how applicants would handle or have handled situations that you feel are important: “What would you do if you dropped me during a transfer?” “Give me an example of how you handle problem situations.”

If transfers are involved, consider having applicants transfer you during the interview. Be sure to have another person present just in case their transfer skills are not what they should be!

This is a good time to show potential employees the area they would be working in. If part of the job is driving, consider having applicants take you for a spin around the block. Can they drive a stick shift, a big van, or long distances if your job requires it?

Note: Insurance issues are discussed on page 37.

Hiring

Several laws exist that prohibit hiring and wage discrimination based on race or ethnicity, religion, gender, ancestry, disability, age, national origin, sexual orientation or veteran status.

Individual states have their own regulations based on smaller numbers of employees. In Ohio, for example, the Civil Rights Commission enforces state laws that prohibit discrimination by employers based on the number of employees.

NOTE: Non-discrimination practices should be used no matter how many employees you have.

But what do you do if you are a woman with a staff of five PAs and do not feel comfortable with a man bathing you? Or if you are a male needing help with toileting at work or school and would rather your PA be another male? These are legitimate questions and concerns, and you have a right to ask for a waiver of the regulation. To apply for a waiver in Ohio, contact the Civil Rights Commission and ask for a Bona Fide Occupational Qualification (BFOQ). You will have an opportunity to explain your particular situation. The laws in Ohio do not apply to employers of fewer than four employees.

Reference Checks

Always, ALWAYS check applicants’ references! It does not matter that the person gave a better interview than anyone you have ever seen! It does not matter that you liked him or her and think that you would get along great together! It does not matter that you already know the person through friends, work, or school! You cannot make a sound decision without input from others who have known the applicant longer.

Ask the person for the names of from three to five people who will furnish professional and character references. This includes people they have cared for, including an elderly or ill family member. By asking for more than you actually need, you are assured of two to three usable references. (Persons providing references may be out ill or on vacation when you call.) If applicants have not worked for a while, ask them whether they have done any babysitting, taken any classes, or served on any committees. If parents are willing to trust this person with their child, that is a good recommendation. Likewise, a professor or committee chair can tell you whether someone had good attendance and completed tasks properly and on time.

Some companies will ask for a written release before telling you anything about the employee. A sample release form is included as an Appendix. Others may have a policy not to give out any information other than the dates of employment.

When checking references, briefly verify what applicants told you about their dates of employment and job title. Determine whether their job performance was satisfactory. If an applicant no longer works for a particular employer, ask about eligibility to rehire. Ask questions that will tell you specifically what you need to know. For example:

— What can you tell me about his or her attendance?

— Can you describe his or her job performance?

— The ability and willingness to follow directions is important to me. What can you tell me about his or her ability to listen and follow directions?

— How responsible is he or she? Give me an example.

— Give an example of his or her ability to handle tense or emergency situations.

— How did he or she get along with others?

— Give me an example of how he or she handled constructive criticism.

— Did you trust him or her?

— Would you consider rehiring him or her?

Successful reference-checking is mainly a question of balancing the information you obtain. Weigh employment references (including babysitting and classes) more heavily that personal references. Naturally a close relative or best friend will have only good things to say, but sometimes you can tell a lot about people by the company they keep.

Even if all the references look good and you think that you have finally found the right person, you never know until the last minute whether the person will end up working for you. You may call to offer the job only to find out that your favorite applicant has taken another job or is no longer interested. Do not take it personally. Keep a sense of humor and do some more interviewing.

Paperwork

The first time your PA comes to work, have him or her fill out the paperwork needed for payroll (information on taxes and the forms needed are covered elsewhere in this manual). Make sure that the PA understands which taxes are being withheld, when the pay period ends, and when paydays are scheduled.

Do yourself a favor by insisting that your PA log in at the beginning and log out at the end of each shift. It is too easy to forget when your PA arrived and left, especially if you have a varied schedule or several employees. By keeping time logs (also called time sheets), you have a paper trail that shows tardiness, absences, as well as good attendance. This can be useful information to have when you do employee evaluations. A sample time log has been included as an Appendix.

••• Suggestion: Consider carefully where you will want to hold face-to-face interviews. Meeting in your home gives applicants a clear idea of where they would be working much of the time. Meeting in a neutral location, such as a public park (in good weather) or a quiet restaurant, helps to protect your privacy.

••• Suggestion: To avoid disagreement over the accuracy of time sheets, both you and your employee should sign or initial the sheet at the end of a shift.

MANAGEMENT ISSUES 101

Supervising your PA is unlike working with any other type of employee because most traditional employer-employee relationships do not involve such close personal contact. Sometimes roles become confused as good friendships develop. Sometimes the PA may forget and need to be reminded who the decision-maker is in your relationship. It is important that you stay in control. You should be able to prioritize and problem-solve issues if it becomes necessary to do so.

Supervising does not mean dictating. It means working with your employees to help them do the job to the best of their ability. Respect and good communication between you and your employees cannot be stressed enough.

There are many resources available through your local library on how to supervise staff. The majority of these materials agree on several points:

— Make sure that your employees understand what is expected of them.

— Respect them as people and for the role they play in your life.

— Let them know how valuable they are to you.

— Praise them when they are doing well.

— Be fair and honest in your dealings with them.

— If you need to discipline, address the issue calmly and as soon after the occurrence as possible. Listen to their side. Resolve the issue and then let it go.

— Be open to suggestions. Make employees an active part of solving any problems that may arise. They may come up with creative solutions you never even thought of!

Good communication is vital and is not always as easy as it sounds. Make sure that you are communicating what you mean to communicate so that there are no mixed messages.

Here are two communication exercises to try with your PA:

1. Give your PA a piece of paper and a pencil. On another piece of paper, draw a simple design such as a tree, house, or soda can. Then, without letting your PA see your design, give verbal instructions for making a copy of the drawing. You might say, “Draw a line three inches long in the center of the page. Now draw another line....” (You are not allowed to say, “Draw a house.”) You will find out quickly that what is small to you may not be small to someone else. Think about what you are saying when you tell your PA to put your wallet “over there.” Where is “over there”? Unless you are perfectly clear in your communication, you may never find your wallet!
2. Write down directions on how to make a peanut butter and jelly sandwich. Ask your PA to make the sandwich according to your written directions. You can read the directions to your PA. They have to follow your exact directions. It’s interesting to see what happens, especially if you forget to have the PA get a knife or something to spread the peanut butter!

When you are talking with people, look them in the eye. Watch their reaction to what you say. Do you think that they understand what it is you are talking about? If not, say it another way, using words that are easily understood. If your speech is hard for some to understand, let them know that you recognize the difficulty. Encourage them to ask you to repeat what you said if they do not understand. You might consider having pen and paper handy to jot notes back and forth if need be. Friends, family, or another PA may be helpful as an interpreter until a new employee learns your speech patterns or communication techniques.

A variety of obstacles get in the way of good communication, both the ability to express thoughts and listen. Mental and physical stress, not feeling well, medication, and fatigue have an impact. If you are excited or anxious about something happening in your personal life or you are worried about getting the leak in your car fixed, it is hard to follow a list of instructions that others are giving you right now, much less remember what it was they wanted ten minutes ago. The same is true for PAs. If you see that your PA is distracted, give a gentle reminder that you need his or her undivided attention.

By treating your employees with respect and fairness and by showing them a willingness to listen, you will lessen the chances of high staff turnover. You will have created a wonderful, fulfilling work environment that promotes loyalty and trust.

Scheduling

All too often, we tend to overuse people we like to work with. When thinking about scheduling, how often do you think in terms of having one person work six/seven days per week or long shifts. If you have a live-in PA, do you expect them to be available 24/7? Remember that your employees are people with private lives outside of work.

A good rule of thumb is to make sure that you have more help than you really need. For example, you may need someone for two hours in the morning and three in the evening, seven days a week. Your current PA is great to work with and willing to work both shifts. A match made in heaven, right? What happens if he or she gets sick on Friday night and cannot even get out of bed on Saturday morning? It might be a better idea to hire a second or even a third person to split the shifts or days with your first employee. In this way you have a better chance of having backup help to cover emergencies and vacations.

Training

At first, it may seem awkward to train someone in assisting you, but it will eventually become automatic. You will have an easier time if you have a good understanding of what you need and how you want to have it done. You probably have more experience in training others than you realize. You may have instructed your parents or family members in how to help meet your needs. Remember the time you were away from home, maybe at camp or in the hospital, and had to explain to total strangers how to work with you?

Everyone has unique teaching and learning styles. Some prefer to work alone with their new PA. Others find it easier to have the new employee watch another person working with them. You may find that a combination of both styles works best.

It is helpful to start training a new employee when there are no time constraints. Expect new PAs to be nervous and everything to take longer. Be patient while they are learning your routines, likes, and dislikes. Encourage questions and try to reassure them when they forget or make mistakes. Sometimes a written checklist helps.

The training process can be mentally and physically exhausting. It can also be a lot of fun as you get to know this new person in your life. You will notice vast improvements from one day to the next as you develop your working relationship.

If you notice your PA has a problem learning a particular task, skill, or sequence of tasks, try breaking it down into smaller steps. Once they have mastered one step, you can begin adding others. Have patience and keep your sense of humor!

Working Agreements

Working agreements, or contracts, help promote professionalism and underscore the importance of the work being done for you. They also serve as a guideline for discussion of responsibilities and duties. A sample contract has been included as an Appendix.

Although contracts do not have to be lengthy documents, they should specify work hours and duties, salaries and benefits, and days off. In the case of a live-in PA, consider adding provisions to cover the personal use of specific rooms, individual and common food, house-hold expenses such as utilities, use of the phone, and overnight guests.

Both parties should have input into development of the contract. Both parties should then sign the document. Remember: Contracts are sets of agreements. If a particular agreement no longer works, change it to suit your needs.

••• Suggestion: If you and your PA are unable to resolve a dispute, consider bringing in a third party to mediate.

••• Suggestion: For the sake of your own sanity, try not to have too many people start during the same week.

TAXES, TAXES, AND...YES...MORE TAXES!

Personal assistants are considered household employees or domestic workers under the federal definition. They are usually not considered independent contractors, however, at the time of this manual revision, some Ohio funding sources do recognize independent contractors. According to the IRS because you control the work that is done and how it is done, you are the employer.

As an employer, you are responsible for making sure the employee is eligible to legally work within the United States and for withholding Social Security (FICA) and Medicare taxes from employee wages if appropriate. You may also be responsible for payment of federal and state unemployment taxes and workers’ compensation taxes. The withholding of federal and state income taxes is optional; however, the withholding of city income taxes may be mandatory. Check with your city tax department.

The mere mention of being responsible for employer taxes is enough to make the strongest of us all cringe in fear! “What if I make a mistake?” “What if I use the wrong form?” “Will Uncle Sam throw me in jail if I goof up?” The keys to surviving the tax mess are not to panic, to understand your responsibilities as an employer, and to develop an organized record-keeping system. Samples of employer record-keeping sheets as well as federal forms have been included as Appendices.

The federal government has tried to simplify the reporting process for employers of domestic help over the past several years. Rules have changed so that you now report payments once a year, on Schedule H, when you file your year-end income tax return (Form 1040 or Form 1040A). You file only if you pay cash wages of $1,400 or more to any one employee during the calendar year.

You also have the option of paying estimated taxes on a quarterly basis if that is easier for you. You can estimate the tax you will owe and then make payments quarterly (every three months). Making quarterly payments, using the 1040-ES Payment Voucher, is also easier on the pocketbook than paying one large lump sum at the end of the year. The 1040-ES Payment Voucher (available through the IRS) comes in coupon form, listing dates when payments are due. Making these payments is not the same as filing a return; you still have to send in Schedule H at the end of the tax year. (The IRS will apply penalties if these estimated payments add up to a lot less than the total tax that is due when you file your return.)

In a nutshell, you need to take the following steps:

— Get a copy of IRS Publication 926, “Household Employer’s Tax Guide”. This publication, as well as other IRS tax forms, are available on the web at www.irs.gov or by calling (800) 829-3676.

— Get the Social Security number of your employees.

— Have your PAs fill out a Form I-9, which verifies that they are U. S. citizens or resident aliens who have the proper documents to work in the United States. These forms may be obtained from the U.S. Citizenship and Immigration Services of the Department of Homeland Security.

— File Form SS-4 with the IRS to get your federal Employer Identification Number (EIN). You can obtain the form by calling the Internal Revenue Service (IRS). The IRS representative may even take the information over the phone. While you have the IRS on the phone, you may want to consider asking for Publication 926, Employment Taxes for Household Employers.

— Report the hiring of your PA (in Ohio, on New Hire Reporting Form 7048). As of October 1, 1997, federal law requires all employers to report (1) the hiring of any new employee or (2) the return to work of any employee who has been laid off, furloughed, separated, granted a leave without pay or terminated from employment. This form must be filed within 20 calendar days with the Ohio New Hire Reporting Center. You can file this report Electronically if that is easier for you. The email address and phone number for the Center is included in the reference list towards the back of the manual.

— Contact the Bureau of Workers’ Compensation to request the proper forms you will need to use.

— Pay the 15.3% combined Social Security and Medicare tax to the IRS. In most cases, you take 7.65% from your employee’s paycheck and match it with 7.65% of your money.

— If your PA is paid more than $1,000 per calendar quarter, you will need to save an extra 6.2% of the first $ 7,000 of each employee’s annual wages to go for federal unemployment taxes. Please note that you will receive a credit on your federal unemployment taxes if you pay your state taxes (at the rate of 2.7% of the first $ 9,000 of each employee’s annual wages) on time. This credit may reduce your federal unemployment tax to as low as 0.8%. In Ohio, state tax forms may be obtained from the Ohio Job and Family Services.

— Have your PA fill out a Form W-4 if they want you to withhold state, federal, and city income taxes. Keep this form on file. According to IRS Publication 926, Employment Taxes for Household Employers, you do not have to withhold federal income tax unless the employee asks you to and you agree. It is suggested that a PA who does not want these taxes withheld should put in writing that you are not liable for withholding them. Check with your local city income tax office, because you may be responsible for local city and school taxes even if you do not pay state and federal taxes.

— Attach Schedule H to your Form 1040 or Form 1040A federal income tax return. If you do not file a Form 1040 or 1040A (for example, because you have no income that is taxable), you still need to send in Schedule H. (Even if you have no taxable income, it is a good idea to file a Form 1040A with Schedule H.)

— File a year-end Form W-2 and give a copy to your PA by January 31 of each year.

Tax forms are sometimes available at local post offices and libraries. They may also be found by calling 1-800-taxforms between 7am and 7pm or on the Internet. Be aware that you may need specialized software in order to use the forms. This software can generally be downloaded from the Internet as well.

By applying for an Employer Identification Number, you are putting your name in “the system,” and you should automatically receive the forms you need. If not, the IRS is only a toll-free phone call away! Be assured that the IRS and other departments of taxation are more than happy to send you the latest forms and to answer any questions you may have.

If you are totally confused after talking with the IRS, check with a local Center for Independent Living or an accountant who understands household employee taxes. They may have had experience in dealing with employer taxes. It may also help to talk with someone who is already working with a PA and paying employer taxes and can show you the ropes. Your funding source may have names of fiscal intermediaries who may be able to help you (for a small fee) with all your payroll and employer reporting responsibilities if you would rather let someone else handle the finances.

••• If you are not sure if your potential employee can legally work in the United States, call the U. S. Citizenship and Immigration Services at (800) 357-2099.

If you have a question, call: (800) 829-1040; TTY/TDD: (800) 829-4477

PROTECT YOURSELF!

The next few paragraphs deal with steps you should consider taking to protect yourself as much as possible from liabilities you may face as an employer. Sometimes these steps are time consuming, but it is better to take time early in the game rather than to pay dearly later.

Background Checks

Home health agencies are required by law to conduct background checks on all their employees. If you are interested in doing such a check on your “private pay” PA, you can do so by contacting the Bureau of Criminal Identification and Investigation (BCI&I) through the State Attorney General’s office. You can also ask your potential PA to bring you a copy of a recent background check. Checks are also available through your local police department, but they may not be as thorough as a BCI&I check. Some County websites make criminal case dockets available if you want to do a quick check on your own. Be aware that these web-sites may not contain complete information. Most checks involve nominal costs and paperwork and that it may take from two to four weeks to get the results of your check.

In Ohio, if your potential employee is a STNA (State Tested Nurse Aide), you can call the STNA Registry to see if they are in good standing. That number is (800) 582-5908. You will need their Social Security number to access the registry.

Bonding

Bonding is a form of insurance that guards against a financial loss caused by the PA such as theft or embezzlement. Although bonding insurance is typically provided to agencies, private individuals may also be bonded. For more information, call your insurance agent or look under “Bonds, Surety and Fidelity” in the yellow classified section of your phone book.

Employer Taxes

Although it may be tempting to pay “under the table” to avoid what seems like reams of paperwork, not to mention the additional costs involved, do not do it. It is illegal and the consequences will cost you. What would happen if your employee were hurt on the job? What if you wanted to use your PA as a tax deduction? What if someone reported you to Social Security or your PA claimed that you never paid them? It is not worth the penalties you would be paying in the long run to save a little time and energy in the short run.

Drivers

If your PA is going to be driving you in their vehicle, ask to see proof of paid insurance. Also get a copy of their current driver’s license. Decide from the beginning who will be responsible for maintenance costs. Will you be paying for mileage, gas, or repairs? Will your PA? Or will you split the costs in some way?

If your PA is going to be driving your vehicle, report them to your insurance agent. Please note: the insurance company may run a check on their driving record to see whether they are eligible for coverage. The insurance company will be looking for any tickets and warrants. Please note: Insurance rates may be affected by the person’s age and driving record. Discuss this issue with your insurance representative before you begin hiring so that you will know what to look out for. Other questions/issues which should also be addressed in your working agreement:

— Who pays if the PA gets a speeding or parking ticket during the course of the work day?

— Can the PA use the vehicle for personal use during non-work hours?

— If so, do you need to be notified when and where your vehicle is being taken?

— Will the PA keep a vehicle key at all times?

— Does the PA need to turn in gas and repair receipts?

Firing

Nobody likes to fire an employee. Unfortunately, you may find yourself in a situation where you have no choice but to let one of your personal assistants go.

The time to plan for this possibility is before you run into trouble. Always have enough regular employees, backup employees, and friends so that the loss of one person, for whatever reason, will not cause your whole support system to fall apart. People will come and go, and you will need to replace them. By maintaining a large enough network, you can choose to be a little picky about who works for you.

If your PA is doing something that you feel is incorrect or annoying, gently explain how you would like it done instead. Sometimes it is just a matter of explaining the reason why you need something done a particular way. Listen with an open mind to your employee’s suggestions as well.

For more serious problems, you may want to schedule a meeting with your employee, preferably at the end of the shift. Explain in a non-accusatory, factual way what his or her behavior is and why it is unacceptable. You can invite an explanation by making an observation or asking a neutral, open-ended question, such as “I notice that you’ve been late a lot this past week. Is there something I should know about?” Try to discuss the matter calmly and plan together how to improve the situation. You may issue a warning that if the problem continues, it may lead to dismissal. If the problem is serious enough, you may want to put the warning in writing and have the employee sign it.

Some problems can be documented (for example, calling in sick a lot or often showing up late). In such cases, write down in a notebook the dates and what happened. Later, if you do have to fire the person and he or she files for unemployment compensation, this log may be able to show that you were justified in letting your employee go.

If you feel that your safety or property is in danger, act immediately. If possible, alert your other PAS providers so they can cover the hours of the person you are letting go. That way you can concentrate on what you have to do rather than on who is going to put you to bed. If you have good relationships with your other employees, as well as a strong network of friends, people may even encourage you to fire someone who is not working out. They may also be glad to fill in until someone else is hired.

Depending on the situation, you may want to give your employee notice of the dismissal in person, or you may choose to handle the matter over the phone. If you fire an employee in person, consider doing so at the end of a shift rather than at the beginning. The person you are firing may be upset. You feel more comfortable if you have a friend or family member nearby. If you feel threatened in any way, you have the option of calling the police.

Get back any keys or personal property you may have lent to the PA. You may want to change locks or security codes if the situation calls for it and take the person off your insurance policy. If you owe the PA a final paycheck, have it ready or specify when it will be mailed.

If your employee files for unemployment compensation, you will be mailed a notice of the claim. Your employee must list all employers, both current and past, when filing the application. Be sure to respond to this notice, even if the employee has not worked for you for a while. If you do not respond, the Bureau will automatically rule in favor of the ex-employee. When writing your response, be factual and give examples of your reasons for the dismissal. If a particular reason severely affected your life or safety, state that fact in detail. For example, if your PA was frequently late in getting you out of bed in the morning, you could say, “My former employee was let go because he or she was an hour late three times a week. I was therefore continually late for work. If the situation had continued, I would have been fired myself.”

••• Suggestion: Make a written record (“paper trail”) of important information, such as payroll, job duties, disciplinary actions, and so forth. When in doubt, write it out!

REDUCING THE STRESS LEVEL

Working with a PA can be a freeing, yet stressful, experience. Along with the flexibility and control you gain over your life, you also end up with a huge amount of responsibility. At any time, someone can call and say, “I can’t work tonight,” and you are the one who has to do something about it. There are some steps you can take to make the process easier on yourself:

— Go with the flow! Sometimes things happen, and getting all upset does not make it any easier. Do what you can to resolve the problem. Do not spend time and energy worrying when the same time and energy could be spent resolving the issue.

— Prioritize. If you have lots to do and know that you cannot possibly get to it all, make a mental or written list of what is most important. Then tackle your list one item at a time starting from the highest priority.

— Plan ahead. Periodically ask yourself whether you have enough assistants. If not, do something about it right then; do not wait for a crisis.

— Delegate! Delegating does not mean giving up control. It simply means taking a look at your PA’s strengths and interests and using them to make life easier. For example, if you hate doing payroll, teach a PA to do it if he or she has a knack for numbers. You can then review it before you sign checks.

— Use the Five-Year Rule. When something bothers you about someone or something, ask yourself: How important is it? Will it matter five years from now?

— Take time out for yourself. Treat yourself! Be good to yourself! You do not even have to spend lots of money. Maybe it is enough to get out of the house and enjoy the outdoors or to splurge on a double chocolate ice cream cone. Listen to your favorite music. Read a good book.

— Eat regular meals and get a good night’s sleep. You will feel much less overwhelmed if you can stick to your routines and take care of your basic needs.

— Try visualization and go on a mental trip. Imagine yourself in a better time or place. Do you have a favorite memory? Close your eyes and relive it all over again.

— Take three deep breaths. It really does work!

DREAM AND REALITY

In theory, personal assistance services are a wonderful thing. With the help of personal assistants, people of all ages who have disabilities are free to pursue the same activities and to follow the same dreams as everyone else. When employers and assistants get along well as people and are committed to each other’s goals, the relationships that result can be strong and long-lasting.

In an ideal world, people with disabilities would have no trouble finding responsible, caring assistants to work with them at the times they choose. Conflicts would be handled in positive ways. Assistants would always show up and on time. People would have enough funding to buy the services they need, and the paperwork would be minimal.

Then there is reality....

Hiring and working with your own PA will allow you the maximum level of independence and choice in your life. But it is HARD WORK! In hiring assistants, you take on all the responsibilities of an employer: handling labor relations, managing cash flow, making payroll, withholding taxes, and assuring reliability and quality of service. Add to this list the concerns unique to your situation! Depending on the level of assistance needed, managing your support system can almost be a full-time job in itself, not to mention your other responsibilities.

But then... consider the alternatives.

THE FUTURE: WHAT CAN WE DO ABOUT PAS?

We live in a time of great change. Legislation affecting the lives of people with disabilities is in the forefront on local, state, and national levels.

Advocacy efforts to increase community-based and consumer-directed options for people with disabilities are working. Your voice is being heard but change continues to be slow. Legislators, decision and policy makers and beginning to listen to consumers and their advocates. A good example of this is President Bush’s New Freedom Initiatives. Because of this, we are seeing State and Federally funded initiatives such as “Cash and Counseling” and Nursing Home Transition projects. These initiatives are based on the premise that people with disabilities want to stay in communities of their choice and have control over their lives. It makes sense.

In Ohio, in response to the Olmstead Decision, the Ohio Access was developed. This document outlines Ohio’s plans to community-based services available for people with disabilities. It is available on the web at: www.ohioaccess.ohio.gov.

Issues such as MICASSA, Money Follows the Person and Medicaid Buy-In continue to be in the forefront. Consumer advocates, their families and other stakeholders work to educate policymakers on the importance of these programs.

Pilot projects involving the development of consumer-directed personal assistance cooperatives and nursing home transition projects are well underway. Both of these projects put control back into the hands of the consumer in community based settings.

Direct workforce shortage councils in communities and around the state are looking for ways to increase direct-care workforce capacity. These initiatives will make life easier for your PA, which in turn, will make life easier for you.

We need to continue to speak out and educate policymakers in order to insure continued expansion of community-based options. Now is the perfect time to become involved! Find out what others are doing to address the needs for personal assistance services in your community or state. Many disability or age-related groups/associations do some sort of legislative advocacy. They would be happy to have your help. It is important that your voice be heard.

IN CLOSING

Although this manual is filled with helpful hints, points to ponder, and other tidbits of information, it is only a guide. Your circumstances are unique! Write in the wide margins of this manual, underline or highlight useful sections, and cross out others that are of no use to you. In other words, take charge and make it your own personal guide to PAS management.

GOOD LUCK!!

RESOURCES

National Resources

Alzheimer’s Association
800-272-3900
www.alz.org

American Cancer Society
800-422-6237
www.cancer.gov

American Council of the Blind
800-424-8666
www.acb.org

American Diabetes Association
800-676-4065
www.diabetes.org

American Kidney Fund
800-638-8299
www.kidneyfund.org

American Liver Foundation
800-223-0179
www.liverfoundation.org

American Parkinson’s Disease Association
800-223-2732
www.apdaparkinson.org

Arthritis Foundation
800-283-7800
www.arthritis.org

Center for Disease Control, National HIV/ AIDS Hotline
800-342-2437
www.cdc.gov

ElderCare Locator
800-677-1116
www.eldercare.gov

Epilepsy Foundation
301-459-3700
www.epilepsyfoundation.org

Equal Employment Opportunity Commission
800-669-4000
www.eeoc.gov

Internal Revenue Service (IRS)
www.irs.gov

General Information: Voice 800-829-1040
TTY 800-829-4059

IRS Tax Forms: Voice 800-829-3676
TTY: 800-829-4477

Medicare Balanced Billing Program (Medicare Overcharges)
800-899-7127

M.S. Association of America (MSAA)
856-488-4500
www.msaa.com

Muscular Dystrophy Association
520-529-2000
www.mdausa.org

National Federation of the Blind
410-659-9314
www.nfb.org

National Council of Catholic Women
800-506-9407
www.nccw.org

National Council on Independent Living
877-525-3400
www.ncil.org

National Easter Seal Society
800-221-6827
www.easter-seals.org

National Multiple Sclerosis Society
800-344-4867
www.nmss.org

Paralyzed Veterans of America
800-424-8200
www.pva.org

Paraprofessional Healthcare Institute
www.paraprofessional.org

Substance Abuse & Treatment Information
800-662-4357
www.drughelp.org

United Cerebral Palsy Associations
800-872-5827 (800-USA-5UCP)
www.ucp.org

United States Citizenship and Immigration Services
800-357-2099

Ohio Resources

State of Ohio information:
www.ohio.gov
www.connectmeohio.com

Attorney General’s Office, Bureau of Criminal Identification and Investigation
614-466-8204

Bureau of Workers’ Compensation
800-282-9536

Centers for Independent Living:

— The Ability Center of Greater Toledo
Voice: 419-885-5733
TTY: 419-882-2387
www.abilitycenter.org

— Ability Center Defiance County Branch Office:
Voice/TTY: 419-782-5441

— Access Center for Independent Living
Voice: 937-341-5202
TTY 937-341-5217
www.acils.com

— Independent Living Center of North Central Ohio
419-526-6770
ilcnco@aol.com

— Center for Independent Living Options
Voice: 513-241-2600
TTY: 513-241-1707
www.cilo.net

— Linking Employment, Abilities & Potential (LEAP)
Voice/TTY: 216-696-2716
www.leapinfo.org

LEAP Lorain County Branch Office
Voice: 440-277-8888/800-410-5327
TTY: 800-750-0750

LEAP University Circle Branch Office
Voice: 216-229-3029
TTY: 800-750-0750

— Mid-Ohio Board for an Independent Living Environment (MOBILE)
Voice: 614-443-5936
TTY: (614) 443-5957
www.mobileonline.org

— Pioneer Independent Living Center
Voice:(740)568-0527
Jwines@wscc.edu

— Services for Independent Living
Voice: 216-731-1529
TTY: 216-731-3083
SIL@stratos.net

— Society for Equal Access
Voice: 330-343-3668
TTY: 330-602-2557
ilc@tusco.net

— Southeastern Ohio Center for Independent Living (SOCIL)
Voice/TTY: 740-689-1494
www.socil.org

— Tri-County Independent Living Center
Voice: 330-762-0007
Voice/TTY: 800-750-0750
www.tcilc.org

Civil Rights Commission
614-466-2785
www.state.oh.us/crc

Department of Aging, PASSPORT Program
614-466-1220
www.goldenbuckeye.com

Department of Health
614-466-3543
www.odh.state.oh.us

Division of Prevention, Infectious Disease Control
800-282-0546

Department of Jobs and Family Services
614-466-6282
http://jfs.oh.gov

Department of Mental Health
614-466-2596
www.state.oh.usa

Department of Mental Retardation and Developmental Disabilities
800-231-5872
www.odmrdd.state.oh.us

Department of Taxation
800-282-1780
www.state.oh.us/tax

Easter Seals of Central and Southeast Ohio
Voice/TTY: 800-860-5523
Voice/TTY: 614-228-5523

Nursing Home/ Long-Term Care Complaints
800-282-1206
www.ltcohio.org

Ohio Brain Injury Association
800-686-9563
www.biaoh.org

Ohio Developmental Disabilities Council
800-766-7426
www.state.oh.us/ddc

Ohio Legal Rights Service
800-282-9181
www.state.oh.us/olrs

Ohio Legislative Information
800-282-0253

Ohio New Hire Reporting Center
888-872-1490
www.OHNewHire.com

Ohio One-Stop Centers
www.ohioworkforce.org

Ohio Rehabilitation Services Commission (ORSC)
800-282-4536
www.rsc.ohio.gov/index.asp

ORSC Personal Care Assistance Program
800-282-4536, ext. 1270

Paralyzed Veterans of America, Buckeye Chapter
800-248-2548
www.pva.org

PRO Seniors/ Disabled Legal Hotline (Long-Term Care Issues)
800-488-6070

Statewide Independent Living Council
800-566-7788

STNA Registry
800-582-5908

Ohio Tax Information
614-466-2319
www.ohio.gov
www.householdemploymenttaxes.com

Be sure to write down any additional phone numbers that are useful to you.

APPENDICES (available on request)

Examples of Want Ads
Application for Employment
Reference Release
Examples of Interview Topics
Examples of Interview Questions
Questions to Avoid
Job Duties Worksheet
Example of a Job Description
Working Agreement
Needs Checklist
Request That Income Taxes Not Be Withheld
Time Log
Individual Payroll Record Sheet
Group Payroll Record Sheet
Government Tax Forms

U.S. Citizenship and Immigration Services Form 1-9, Employment Eligibility Verification [2 pages, including a listing of acceptable verification documents]

U.S. Internal Revenue Service Form SS-4, Application for Employer Identification Number [1 page]

U.S. Internal Revenue Service Form W-2,Wage and Tax Statement [1 page]

U.S. Internal Revenue Service Form W-4,Employee's Withholding Allowance Certificate [2 pages]

U.S. Internal Revenue Service Schedule H (Form 1040),Household Employment Taxes [2 pages]

Ohio New Hire Reporting Form 7048 [2 pages]

Ohio Bureau of Workers' Compensation Application for Ohio Workers’ Compensation Coverage [first page]

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