MANAGEMENT MANUAL FOR CUSTOMERS
The purpose of this manual is to help define your role, and gain the skills you need to successfully hire, train, and supervise your assistant or personal assistant. The materials in this manual have been prepared by people who have a disability and who may have utilized personal assistance services at some time or may be using them now.
In the past, there has often been an expectation that people with disabilities must be “taken care of”, that they can’t manage their own services. Centers such as DAC-NW that are run by people with various kinds of disabilities, have organized nationally and world-wide to address the needs of people with disabilities and to support our right to choose and direct our own services when we are able and willing to do so.
Although this manual does not offer total solutions to the difficulties people with disabilities face in regard to locating, hiring, and managing their own personal assistance services, it does offer tools that will help you feel empowered to make better decisions
Many of us have felt like we had to come way out of ourselves in the role of employer. We might have to open up in ways that challenge us if we are quiet people for example. It should be understood that you are responsible for making decisions regarding your care and managing your household.
In order for the relationship to work out, it is important that each of you respects the other one.
Since we are in the position of having someone in our lives to assist us with functions it helps to:
- Be knowledgeable about your disability and body;
- Develop good management skills. Know how you want your household to run and be organized;
- There are different ways of doing things. You may be open for suggestions, however, if it is not what you prefer, don’t be afraid to state that; and
- Be nice, a polite attitude from you will give them another reason to enjoy their job.
We all have boundaries, it’s normal. It may even be more necessary for those of us that have certain physical needs, which cause us more vulnerability. The need to have some sense of control in our lives. It’s a normal human kind of thing. If you have someone living with you, you may need to say no to things like borrowing clothes, money or personal things. You may need to set boundaries regarding socializing. You may feel guilty. Do it anyway. Avoidance is a breeding ground for resentment.
Independent Living Means Being a Part of the Community and having appropriate:
- Personal assistance housing Transportation Employment;
- Recreation Peer Support Self Help;
- Medical Services Legal Services Education;
- Political Opportunities Community Celebrations; AND
- Self Determination Control over our own lives Access to All of society!
Independent living is living just like everyone else. It is having the freedom to make decisions that affect our own life; pursuing activities of our own choosing, limited only in the same ways that any citizen’s, with or without a disability is limited.
Independent living is not just living on your own, working in a job that fits with your capabilities and interests, or having an active social life. Independent living also has to do with self-determination. It is having the right and the opportunity to choose your own course of action, being able to succeed or fail on your own merits, and having the freedom to learn from your experiences.
Independent Living Centers are an outgrowth of the international civil rights movement that works against discrimination and for more personal and political power for people with disabilities. The IL movement began in the 1960's and consists of people of all ages with diverse disabilities.
The “Medical Model” of Service Delivery
The medical model of disability assigns us the helpless and passive patient role in which we are often considered dependent upon the care of others, unable to work, exempt from normal duties, leading unfulfilling lives with “medical conditions” that cannot be “cured” – the goal of medical model services. This is apparent by the still common term “invalid” (Latin for “worthless”). We are not patients whose personal care must be supervised by a registered nurse or case manager.
Independent Living Movement Demands Self-Determination
Disability is not a medical problem but a problem of unequal power and preconceived attitudes and stereotypes. We are an underprivileged political minority whose second-class citizenship standing can be improved. Pride, political power and far-reaching systemic changes can alter the scale’s balance.
De-institutionalization
With the justification that we are sick and unable to care for ourselves, many of us are confined in institutions, deprived of the most basic decisions and opportunities, which other people take for granted. We suffer loss of social skills, self-confidence and stunted human growth. The Independent Living Movement has amply demonstrated that nobody, regardless of type and extent of disability, needs to be in an institution, if provided with the appropriate services in the community.
Consumer Control
Today many services such as housing, transportation and Personal assistance services are designed for the needs of the service provider and not the needs of people with disabilities who use the services.
Independent living means having choice over the services you use
Centers for Independent Living offer consumer-based services, run ‘by’ and ‘for’ people with disabilities. The Independent Living Movement demands the same range of options and the same degree of control over our lives that our non-disabled peers enjoy. People with disabilities need to take as much initiative as possible in designing services that maximize choice and control. Nobody can make choices more appropriate for us than US; we are the experts on our lives!!!
Traditional disability service providers are organized along diagnostic lines. For each medical condition, there is a separate organization.
This emphasizes the "sick role" and focuses on what divides us instead of concentrating on our common issues. Seeing disability as a medical problem, rather than a political or social problem, is perpetuated and reinforced by service providers that have non-disabled “experts” both in management and staff positions.
The Independent Living Movement believes that service organizations can work more effectively towards the goal of full participation and equality when disabled people themselves are in control, since we are the best experts on our needs. We need to demonstrate to the public and to ourselves that we are fully capable of taking responsibility for our own services, and exercising control over our own lives.
Peer Support
Since people with disabilities have become part of their respective communities, many of us have internalized societal prejudices against disability. The Independent Living Movement recognizes that our success in managing our lives must go hand in hand with freeing ourselves from internalized oppression, self-contempt, and low self-confidence. With communication with peers with disabilities, we can support each other through shared experiences.
No Longer Victims
No longer are we helpless victims dependent
upon other people’s charitable attitude.
Better than an expert a friend!
Peer support means to share one’s experience. In peer counseling individuals with disabilities learn from each other the practical and social skills needed for self-directed life in the community. Peer support provides appropriate role models, to increase self-reliance and encourages individuals to take charge of his/her life. Regardless of type and extent of disability, we all can learn to take more responsibility for ourselves. The Independent Living Movement seeks to empower the individual with the tools to bring about these changes in one’s life.
We feel peer support is very helpful as people deal with situations, which present themselves in daily living.
Connecting with Independent Living Centers, which have peer support groups, or starting them can be very beneficial in combating the isolation, which has contributed to the mass of ignorance.
Self Esteem
Self-esteem means belief in oneself. Esteem means to value highly, to respect. Many of us have dealt with the issue of trying to be ‘normal’ when in reality it takes us more time to perform tasks. Being realistic about our abilities involves self-respect and high regard. We cease comparing ourselves endlessly to arbitrary standards adopted by our society and promoted endlessly through the media.
Changing Our Self-Image
We need to view ourselves as employers and managers to make our lives function in a productive and an emotionally healthy manner.
All cultures have a different definition of what they value and hold in high regard, as do sub-cultures. People with disabilities are beginning to talk about and recognize our sub-culture. We need to validate ourselves, our abilities and our accomplishments. We do have abilities and we are capable of accomplishment. Being ‘realistic’ does not mean lacking goals, dreams, and hopes in life. The presence of disability does not mean the absence of these vital life elements. It is not that you shouldn’t challenge yourself, rather you should cut yourself some slack in terms of how much time it actually takes to get things done and how much assistance you might need.
Goals
Goals are defined as an end that one strives to attain. We all need something to live for, to guide us, to keep us healthy, give our life meaning and a sense of being connected in society. Because our disabilities all vary, our ways of expressing ourselves also differ. Goals are individually set. Society values the ‘work ethic’. As people with disabilities, we have been forced into thinking more creatively in many respects. Although we or people we know may not fit within the traditional “work ethic” model that says we are validated by the work we do, we are nevertheless capable of making valuable contributions to life and society.
You may decide you want to go to work, pursue a vocational goal, attend school or do volunteer work. Have a plan for your day. It could be a combination of these or other activities. Sort out what you need financially and then make a plan and a commitment to yourself to work toward reaching your goals.
When you feel a sense of direction it will make a difference in who you choose as your assistant and the quality of the assistant who will want to work for you. Having an awareness of where you want to be, what you want to do, and what’s important to you, is a powerful tool to keep you on track with getting the most out of your personal assistance employment experience.
Living in the Community, People with Disabilities:
- Have more control over our lives
- Use fewer tax dollars than being in an institution
- Have a quality of life that enhances our abilities to contribute
Start a List of Your Needs and Wants
What are your boundaries? On what are you willing to compromise? What has been identified as a need in any professional assessments you have undergone?
Instead of hiding and feeling shame about our needs, we can focus our energies on stating our needs and making more skillful choices in hiring a quality assistant.
Before delving into the self-marketing tools for hiring an assistant, some self-reflection may be helpful in defining your wants and needs, determining what you can and cannot compromise. If you are anxious to get started, a sample task list is located on page 9.
Everybody is different and has their own way of coming to terms with the reality of their disability and situation. We all have certain emotional issues to weed through with disability.
It is not the scope of this manual to go into deep psychological processing. That would be more appropriate for a therapist; however, we would like to stress the value of talking and connecting with other people with disabilities. Peer support can be helpful in putting issues in perspective.
Many of us go through a process of shame about our needs. It is really hard feeling exposed and vulnerable to other people. It can become more difficult the closer you get to the more basic needs for physical survival. Some awareness of the emotional processes we are going through as well as that of others helps validate our feelings. Instead of hiding and feeling shame about our needs we can focus our energies on stating our needs and making more skillful choices in hiring a quality assistant.
The assistant we hire is going to have a significant impact on our functioning and attitude. We need to put some thought and energy into what we need, how we want it done and who in our lives we want doing it. What kinds of activities do we want to be involved in and what kinds of people do we want surrounding ourselves.
The market is gradually changing, as there is a growing movement to get people with disabilities out of institutions. Grass roots groups are rising to the challenge of educating our policy and decision-makers about the reality of the need for these services. People with disabilities are demonstrating that when and where the Personal Assistance Services are available, people are better off emotionally, socially and financially.
We have all had good and bad experiences with assistants. There is a high rate of turnover because there are many disincentives (that consumers needs to be aware of) for this kind of work. These elements could affect the safety and stability of the people who use these essential supports.
Disincentives for Assistants paid through state Medicaid funds include:
- Low wages;
- No benefits;
- No vacation/sick days;
- No holidays;
- No retirement; and
- No career incentives.
These disincentives challenge those of us in locating a potential assistant – a quality assistant. Given limited resources, we find ourselves hiring from a pool of individuals, which in some cases have questionable motives. We need to be honest, open and direct in exploring some of the realities that face people with disabilities in hiring someone on limited income. Sometimes that appears as categorizing and stereotyping. Sometimes it is.
Some potential assistant’s are genuinely interested in being of assistance. They may be in the process of making positive changes in their lives. We have found people who are motivated with some personal goals of their own tend to be better assistants. They tend to be more organized about getting things done for the employer.
The intent of this manual is to help you define and clearly state what you need assistance with; develop a self-marketing plan that will help you screen out people that are not sincere about providing the services needed; choose the best applicant; manage your services, i.e. keeping the lines of communication open for feedback; and, how to terminate an assistant or make a transition from one assistant to another when that time comes.
The following each have some effect on your mission to locate an assistant:
- Locations you choose to advertise;
- The manner and attitude you project; and
- The resources for payment of services.
Some people contract with nursing agencies that screen, schedule and provide assistants. That still does not make people exempt from a range of good and bad assistants. It’s up to us as people with disabilities, or family or friends of people with disabilities to be able to develop skills in selecting an honest, dependable person.
There are no guarantees for any of us and this manual is not a foolproof method of finding the ‘perfect’ assistant. The human condition will still surprise us. Remember, some of the most skilled human resource managers in the corporate world sometimes hire people who do not work out.
Different qualities are important to different people. Here are some traits you may want to think about as you consider and make contacts with potential assistants. You have to decide what is most important for you based on your personality, the tasks you need done, and how often you are going to have contact with the assistant.
Some Qualities to Consider:
- Punctual: being on time
- Dependable: being on time consistently
- Helpful: willing to do things rather than acting burdened by your requests
- Goal oriented: wanting to get things done
- Honest: someone you can trust your physical safety to, as well as property
- Clean and neat: keeping things picked up and sanitary
- Take direction: not argumentative thinking their own way is the only way; open to different ways of doing things
- Communicative: easy to talk with, not defensive about discussing difficulties when they arise
- Understanding: having compassion not pity
- Flexible: stable yet not chaotic, can respond to realistic circumstances and changes
- Patient: doesn’t get bothered if things take longer than ‘normal’
Attitudes to look out for in Hiring an Assistant:
- Saviors: those that don’t understand how people with disabilities can go on living without their brand of religious belief
- Rehabilitators: those that think we need to spend our lives putting our own socks on instead of utilizing the assistance of others, so we have time and energy for things like work!
- Condescending: those that pat us on the head saying how marvelous or courageous or what inspiration we are for trying to live a normal life
- Do-gooders: those that decide we are a charity case
- Pity: those that look at us with that ‘you poor helpless thing’ look
- Seeing people with disabilities as children: those that offer parental supervision
- Healers: those that think our life will have more meaning when there is a cure
- New Age Approach: they may tell you it was good you choose to be incarnated in this day and age since there is so much technology available
Desperate Decision Making
Time and pressure to hire someone quickly increases the stress in decision making and choosing an assistant. This can distort our perceptions about someone and can cause us to ignore certain warning signs of attitudes, behaviors or feedback on what might become a problem later. It is important that you take some time in advertising and interviewing. It is much easier to take time rather than have to start all over again if you hire a bad assistant.
Use the application process to assist you in the screening, stick to it as much as you can, and pay attention to the information you get from it.
For example: If people have excuses for not showing up for an appointed interview, does the reason seem legitimate? Is the person hesitant about the process you have for hiring? Is completing a background inquiry a problem for them. Is being direct about your needs somehow awkward for the potential assistant?
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ABUSE AND PROTECTING YOURSELF |
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Abuse and Protecting Yourself
It helps to plan ahead prior to having a problem. Being prepared with a plan may make the difference between being a victim and taking control of the situation and staying in charge and protecting yourself. In your plan, figure out what your priorities are in the event of abuse or neglect or exploitation. The following steps are options that are available to you. You may change the order depending upon the situation.
Getting the Situation to Stop and Ensure Your Safety
- Tell someone else – get your network of support involved. This will demonstrate that you are not isolated and have friends and family to support you;
- If necessary, call the police and file a report;
- Document what is going on. This is important to support injury and/or loss of property claims;
- Make arrangements to have someone with you as you confront or fire your employee, if you don’t feel safe;
- If your assistant is paid by Medicaid, call the Regional Medicaid Unit. This is best done after you have ensured your own safety;
- Contact the Idaho Protection and Advocacy System, at 1-800-632-5125 or 882-0962 in Moscow;
- They offer information and in some cases they can ensure that other agencies you are working with are performing their duties in respect to your safety; and
- File a Tort Claim in Small Claims Court to restore your property.
Where
There are a few places that are more likely to result in a response to advertising for an assistant. Your list could include the following depending upon the community you are living in:
- Employment office
- Community agencies such as Catholic Community Services
- Grocery stores near you
- Senior Centers
- Social service agencies
- Businesses near you
- Community Colleges, Disabled Student Services, Career Center, Nursing Department
- Hospitals
- Tell friends, acquaintances, neighbors
Advertising in Newspaper
There is a cost and it will vary with newspaper. It helps screen out some people to spend more money on the advertisement in the first place. Some personal information to relate to you as a person instead of a ‘quadriplegic needs help’.
What Should Be in The Newspaper Ad?
- Something personal that does not invade your privacy
- Live in or live out
- Days/hours needed, weekend or weekday
- Brief description of duties
- Payment
- Time to call & phone number
- Area of interest that highlights you as a person rather than a medical condition
Something Personal
Include in your advertisement something personal that does not invade your privacy. You want to communicate to a prospective assistant, that you or the person you are hiring for, if a child or an elderly adult parent, are a person, not just a medical condition.
You might consider spending more money on the ad and build in some kind of screening technique. One suggestion is to require the potential assistant to call during a certain time of the day. This helps you see if a person can follow direction. Also it leaves you off the hook for being available at all hours.
Examples of a Newspaper Ads
"Woman who uses electric wheelchair. Has transportation. Needs assistance with personal care. Weekdays from 10am – 12pm, Call eves 7-9pm, 123-4567"
“Spirited, quiet, intelligent, recovery oriented, working woman in wheelchair with 2 cats, many interests including computers, seeks capable, live-in weekday female assistant. Ability to lift transfer, light cooking/housekeeping, personal care, shopping, errands. Free time during day/evening. Weekends off. $1,000 mo., + room. Start April 1. Call 123-456-7890.”
“If you are a student and have other goals for yourself or another part time job, that is great. I find it’s a better match if I can provide a stable living situation for someone who is pursuing goals for themselves while working for me”.
Prepare an 8” by 11” flyer or 3x5 cards: you can hand deliver, have someone do it for you or make some phone calls and find out a contact person. You could then mail the flyer or 3 x 5 cards to them.
When advertising you might consider using the term ‘assistant’, it is becoming more acceptable. It indicates that this is a job that someone gets wages to provide a service to assist you in functioning. Personal assistant is often called attendant, ‘caregiver’, ‘aide’, ‘helper’, and ‘personal care provider’. The term “personal assistant” is an inclusive term that can include the many tasks an assistant may have to provide and implies an employment relationship.
Here are some tips to be aware of in your process of seeking an employee:
- A person’s physical strength needs to be taken into consideration if you need them to transfer you in an out of a wheelchair.
- If your assistant is going to be living in your home you may want to be extra diligent in the screening process for compatibility with that person. Their living habits/lifestyle may conflict with yours.
- If your assistant is going to be on your auto insurance, age can make a big difference in cost.
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