Life on Wheels (33 page)

If necessary, how will they be paid?

How do you ensure the quality of services?

It might already be clear that you are limited in the performance of various personal functions. A person with high quadriplegia doesn’t have to wonder if some personal assistance is necessary. A person with lower quadriplegia or someone with MS experiencing a significant exacerbation could do many things for himself but might quickly fatigue if he does. There is a point where personal assistance makes sense in order to preserve your energy for the rest of the day. No one likes to surrender independence, so people in this gray area will face more difficult decisions. For example, deciding to allow someone else to perform a very personal task like a bowel program can be a difficult line to cross.

A good goal is to find a balance that optimizes your energy so you can do what you want with each day. That could mean assistance from someone every morning and evening or perhaps just an hour or two every other day. Some people perform their bowel programs on alternate days but are able to dress and perform basic household tasks. To the degree possible, continue to do what you can to optimize your capacity and independence, keeping an eye out for undiscovered strategies or new products that allow you to do more for yourself.

Ideally, PAs are the means to gain control over your own life. Personal assistance is a tool you can use to adapt to your disability. Assistance allows you to make your own choices and pursue the level of activity you prefer, according to your ability, on your terms.

The relationship between you and an assistant is a human relationship, with feelings on both sides. Many people avoid receiving assistance from someone they know and prefer to hire someone or work through various agencies that provide these services. That way, the assistant is an employee, and his role is easier to define. Personal relationships can become complicated by this mixture of roles.

Many people develop a detailed job description for an assistant, with a list of specific tasks. The job description does not have to be cast in stone, preventing you from asking for other kinds of assistance. A job description lists what is needed and helps define what the relationship will be like, including:

Clearly defined tasks, such as dressing, administering medication, bowel and bladder programs, or cooking

Hours to be worked

Your requirements for notice of late arrival or nonarrival

Provisions for vacation coverage or illness

Payment

While working out the description of what a PA will be doing, you can discuss such tasks as running errands, house cleaning, or anything else with which you feel you need help. Some of these things might not be acceptable to an assistant or might be precluded by the overseeing agency. This does not mean such requests are impossible—assistants might be willing to do things on their own time or make exceptions to policies in order to provide what you need.

Assistants are not there to be slaves, any more than they are there to tell you what to do. You must respect them and understand that they will be conscious of a boundary they should not cross, such as when you ask for something that would injure you. One PA describes this dilemma:

Some tasks have to be done at a certain time, such as catheterization or getting dressed. Other tasks, like house cleaning, can be scheduled more flexibly. These things get worked out over time in a relaxed, collaborative relationship. Doing a description up front gets this process off to the best possible start.

A working relationship can develop into a friendship, although still with clear boundaries. Hopefully you will work with compassionate people, who will inevitably come to care about you as a person, as any friend would. Two personal assistants talk about their jobs:

Start by checking with your medical funder, be it insurance or government healthcare. Medicare provides funds for home health but has some restrictions on how much you can be out of the home to remain eligible. Many local centers for independent living (CILs) run PA services programs. The center might be limited to offering you classes on using a PA or be an actual provider of services with a database of assistants. Some CILs have contracts with their respective state to run a program using government funds.

Your CIL is not the only possible administrator of PA programs. The city of San Francisco, for instance, offers services with city money, and the state of California runs the IHSS (In Home Supportive Services) program.

One type of program is not necessarily better than another. Do your own research on what programs are well administered, provide the best range of services, and screen their workers well. The following man had a mixed experience with his agency:

You are, of course, free to hire people on your own. Many people advertise in local papers or list themselves at the local CILs looking for people to work. Other places you might advertise include the unemployment office, community agencies such as Catholic Community Services, grocery stores, senior centers, social service agencies, colleges, or hospitals. Also spread the word to friends, acquaintances, and neighbors.

Don’t rush the hiring process. You might feel you have an urgent need to hire someone, possibly because a personal relationship is being strained. But this is an important choice. Like any employer, you have to take the necessary time to find the right person whom you will be comfortable with and can trust. Otherwise, you’ll end up doing it all over again. Or worse, although by far the exception, you could find yourself taken advantage of or even injured.

Many people who use PAs report that allowing someone already close to them to play this role can be fraught with problems. That doesn’t mean that a parent, child, or spouse taking the job guarantees problems, but it will almost necessarily influence the relationship. This is a complex relationship that requires patience and communication. There is a tendency to get caught up in power issues or just plain get tired of too much contact. Sometimes the relationship changes for the better—deeper intimacy and trust and increasing friendship and mutual appreciation.