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You’ve wrestled with the issue of attendant care, and decided that it’s finally time to get some help. Or perhaps a present caregiver is getting older, and needs some relief. Maybe you’re just feeling older yourself. You’re in good company: over forty percent of all people with spinal cord injury (SCI) use some form of assistance, and the percentage increases with age. For first-time personal care attendant (PCA) employers, here are some tips for maintaining freedom, flexibility and control, and saving money to boot.
Organize:First, get organized. Decide which end of your day is the most routine and requires the least spontaneity or flexibility. Are you a morning person or an evening person? Once you’ve decided, move most of your labor-intensive personal care chores into that part of your day–such as showers, bowel and bladder care, hair washing and laundry. A morning person might have a PCA provide just the bare minimum to get the day started–perhaps washing, dressing and tooth brushing–and save the big things–maybe bowel care and shower–for the evening shift when time is not at a premium. An evening person can do the opposite.
Consolidate:Next, figure out how to combine the help you need each day into a few–maybe only one or two–parcels of time. Can the laundry be started when the PCA arrives, then put in the dryer when he or she leaves? Can lunch be made up ahead and left in the refrigerator so you can get it yourself later? There are hundreds of ways to consolidate, and some quadriplegics have been able to group tasks to such an extent that they can lay off the evening attendant. Examples: they’ve had pads pre-placed on their beds, worn elastic-waist pants that are easy to take off, and learned to hook their drainage devices into a night bag that has already been set up for them by the early morning PCA, of course.
Community Resources:Independent living centers can often teach you how to be an effective employer and manager of attendants, and many will also help you recruit and interview them. A nearby college may have a disabled student services program, or even a PCA pool. Try the National Spinal Cord Injury Association chapter in your area, or ask at a local rehabilitation center. And check out your library. One comprehensive text is Home Health Aides: How to Manage The People Who Help You, by Al DeGraff (see resources).
Money Matters:How will you pay your attendants? Will your insurance pay at least part? Can you afford to pay them yourself? Now that you’ve organized and consolidated all of the tasks, it might not be as expensive as you thought. If cash flow is a problem, can you offer room, board or access to a vehicle in return for services? Can you tutor the PCA’s children? Can your church or service club provide volunteers? Have you fully informed yourself about the help available from Medicaid? Ask about Medicaid waivers, which sometimes allow payment for services given in the community.Have you thought about hiring college students? They are young, able bodied, have flexible schedules, and need money. Call the student employment office for recruiting suggestions. Of course, there are also friends and family members, paid and unpaid. Using a friend/relative/lover as a PCA is a path fraught with peril, but many people manage it. Be creative–there are lots of ways to find help, and not all of them require big money.Keep in mind that you’re responsible for taxes, social security and workers compensation for your employees. This is a sticky wicket for many employers, and a good reason to ask for expert advice.
Write a Contract:Outline–in great detail–all the tasks that need to be performed, what you will expect of the attendant and what he or she can expect of you. Include items like hourly rate, the rate for portions of an hour worked, whether and what you will pay the PCA if you must cancel, your expectations if the PCA cancels, grounds for dismissal, how much notice each of you needs to give the other, and any other potential problem that you can foresee. Books are available that make this process easier (see resources). Both you and your PCA should review and sign the contract, and keep a copy on hand. It will protect both of you.
Recruiting:Will you hire through a home health agency? If yes, be prepared to trade some control, especially in terms of choice of providers, for the convenience and, in some cases, the extra reliability and higher level of training they provide. If you plan to hire your own PCA, consider your avenues for getting the word out: newspapers, college bulletin boards, churches and guidance counselors at high schools, junior colleges and vocational schools. When you interview applicants, be prepared to describe–exactly–what the job will entail. At the same time, try to learn as much as you can about the applicants–especially their long term goals, attitudes toward people with disabilities, past work history and reliability. Although it’s logical that people who “really want to help others” make good attendants, the person who wants the job “because I really need the money” may be as reliable and more open to working on your terms. One other thing: even if you need very little care, if it’s care you must have, hire more than one PCA, and possibly several. Always have a backup in place.
Keep Your PCA Happy:Offer a pleasant working environment that someone can enjoy. Make sure the job duties are clear. Hold up your end of the contract. Don’t be taken advantage of, but do be flexible. If the attendant has a suggestion, at least entertain it. Be mindful of what really matters to you and what doesn’t. Long term spinal cord injury survivor and author Al DeGraff, in Home Health Aides: How to Manage the People Who Help You, lists the top ten reasons PCAs 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, etc.4. They’re not paid enough, don’t get appropriate raises or don’t feel their work is appreciated.5. They feel another PCA is favored over them.6. The employer (YOU) is either too passive or too aggressive in his/her style of interaction.7. The employer is dishonest about the hours worked, the salary owed, or has inappropriate expectations such as monetary loans or sexual favors.8. There are unreasonable duties–those the employer is able to perform alone, those which cannot be performed in the allotted time or those which are too tightly supervised.9. The employer is intolerant of honest mistakes, the need for sick time, etc.10. The employer doesn't respect PCA's personal life and expects that his or her needs should take priority over all else in the PCA’s life.
