Life on Wheels (34 page)

Even more complex are the dynamics with a spouse. The desire to be equal partners is a strong part of the marital relationship, and the person being assisted can struggle greatly with feelings of not carrying his share. When it comes to sexuality, it can be difficult to get in the mood when you have just shared the process of a bowel program.

But having an intimate partner play this role does not have to ruin the sexual relationship. If you can talk openly about how the roles are affecting you and find ways to plan time so that personal tasks don’t interfere with sensual times, you can make it work. Some people have even found ways to make something like catheterization a form of foreplay. Others have experimented with someone else performing assistant tasks specifically to help them prepare for sex, and even address the topic in the initial employment interview.

If you are getting help through a medical funder or center for independent living (CIL) program, there will be a process to evaluate your needs. Most programs have a formal requirement. The program balances making sure your needs are met and confirming that services are being used appropriately, all within the boundaries of their available budget and mandate under law.

Some people with disabilities are concerned when the evaluation is performed by the funding source. They are afraid that the need to control a budget will override the priority of optimal assistance.

You are really the expert on what you need. Your needs are not limited to clinical services but include being supported in any way that allows you to have enough energy to function in the world, rather than being exhausted by everything you can do alone but that would fatigue you. Defining needs is tricky. Sometimes the process can leave you unsure you deserve assistance.

When you are working with government coverage or local programs— depending on how they are structured—there will be some amount of paperwork. You have to confirm time sheets for payment or might be asked to evaluate PAs work. Despite a clear ongoing disability, some people are made to repeatedly establish their need for support.

Workers include students doing part-time work while in school, nurses and aides who work for home health agencies, and good-hearted people who don’t really need the money but are interested in helping.

There is a wide range of possible motives for someone to choose this work. When you are interviewing, ask questions to gauge the interviewee’s reasons for seeking this work. And ask specifically about their feelings about disability. You will be screening for a caretaker of a needy person—or anything along the lines of pity and charity. You are looking for someone to be your partner in expanding your independence, someone who will work with you in a mode of respect.

You will also want to take great care that the person is trustworthy. Follow up on references and do a background check; plenty of services are available via the Internet for a reasonable price. There are, sadly, all too many examples of people who have been taken advantage of.

Not everyone has some ulterior or misguided motivation. Some PAs find great meaning in helping people who need support to continue living at home rather than in an institutional setting.

I learned what a joy and how rewarding it is to be able to help a person live at home, where they want to be, and, in most cases, can be. Whether permanently or temporarily handicapped or dying, it makes no sense to put a person in an institution that costs so much more than home-based services, and takes away dignity, self-worth, and freedom, not to mention loved ones and familiar surroundings.

It is important to interview people carefully, to have others around if possible during the early stage of the working relationship, and even to do criminal background checks. Careful screening is standard procedure for some agencies and programs, and you should ask whether that is the case. You should request it. Even if it is refused, it is possible to hire a detective agency at nominal cost to do a simple background check.

Some people are simply desperate for work or unfortunately interested in taking advantage of someone who is vulnerable. Desperation might lead people to prey on you. There are reported instances of physical and other abuse.

This employer of personal assistants found college students more reliable and advertised in the college newspaper:

What does a job as a PA pay? Not much. One of the great challenges of filling the needs of the disability population is the limited supply of people who are able—or willing—to work for minimum wage.

Your program might pay for your PA, or may simply be a service to provide referrals and training to help you find and use such services. Funding could come from sources such as Vocational Rehabilitation or the Veterans Administration.

Payment is usually provided by means of vouchers authorized for a specific number of hours. You typically fill out forms reporting hours, submit them properly signed for payment, and hope they go through. Payment is not always an efficient process, as a PA describes:

A Medicare regulation regarding payment for assistance in the home only pays when your absences from home are “infrequent and for periods of relatively short duration,” which “require a considerable and taxing effort.” Otherwise they will not cover visiting aides and certainly not at a place of work. This is known as the “In-Home Rule.”

An article in the September 1997 issue of
New Mobility
magazine describes the experience of two people, needing assistance in the morning and evening to get into and out of their wheels, who found themselves cut off from coverage when it was discovered that one of them was volunteering at the local school and the other was driving a modified van once his elderly parents were unable to do so.
⁹
A worker provided by an agency blew the whistle because the agency is forced to protect its status as a provider of Medicare-covered services. The choice of these two people was to either stay at home or to surrender coverage.

The article explains that CMS, the Federal agency that runs Medicare and Medicaid, is aware of the problem. CMS explained that when home health coverage was established, it was meant as a short-term solution. It was progressive coverage at the time. There are legislative attempts underway to correct the problem. The restrictions on home care have become obsolete as the ability to function outside of the home with basic levels of support is more possible—and more demanded by people with disabilities.

The Americans with Disabilities Act addresses your rights in the workplace and requires employers to provide “reasonable accommodation” that allows you to meet the requirements of the job. Personal assistance does not qualify as a reasonable accommodation. It is not something that an employer is obligated to provide, so you would need to make your own arrangements if you need support in the workplace, such as help with emptying your bladder.

An agency you work with who provides and funds a PA might have a variety of specific restrictions, often based on the criteria of “medical necessity.” Many times, such services are designed for people thought to be sick or bedridden, not as support services to allow someone to be active.

Al DeGraff, in
Home Health Aides: How to Manage the People Who Help You
,
¹⁰
lists 10 reasons personal assistants quit their jobs:

1. Their initial job description was incomplete or keeps changing.

2. The method and order in which they must perform their duties are illogical, inefficient, and waste time.

3. Their working environment is messy, unpleasant, disorganized,

4. They’re not paid enough, don’t get appropriate raises, or don’t feel their work is appreciated.

5. The employer (you) is either too passive or too aggressive in his/her style of interaction.

6. They feel another personal assistant is favored over them.

7. The employer is dishonest about the hours worked or the salary owed or has inappropriate expectations, such as monetary loans or sexual favors.

8. There are unreasonable duties—those the employer is reasonably able to perform alone, those that cannot be performed in the allotted time, or those that are too tightly supervised.

9. The employer is intolerant of honest mistakes, the need for sick time,

10. The employer doesn’t respect the personal assistant’s personal life and expects that his or her needs should take priority over all else in the personal assistant’s life.

You might be able to get some help from service animals, using programs that train animals and place them. A dog can learn a surprising number of tasks, such as to pick something up from the floor for you or to open a door, turn on a light, answer the phone, push elevator buttons, or pull you over a curb in your chair. In the bargain, you also get a loyal companion.

There is cost involved. The training is expensive, and animals do have to be fed regularly. Some programs will also cover veterinary costs. Programs that train and provide service dogs do their best to raise money to help cover the costs to make them available to more people.

You could even train your own service animal. It’s a substantial commitment, but it is achievable if you commit to learning how. It starts with identifying the breed and specific dog that has the right temperament and personality and that connects with you personally and then fully committing to a process of training and conditioning so that the dog will happily respond to your cues and commands. This is a process that can easily take a couple of years. There are a lot of dog-training resources and programs, including classes offered by your local humane society. The books T
eamwork
and
Teamwork II
by Stewart Nordensson and Lydia Kelley specifically guide you in training your own service dog.

Boston-based Helping Hands provides capuchin monkeys, the type usually depicted with an organ grinder, to clients with quadriplegia. They are raised in foster homes and placed at the age of four years. A key requirement, says program director, Jody Zazula, when she brings a monkey to meet someone for the first time, is that “they fall in love with each other.”