Living Services Can Help the PWME/C
By Elizabeth Schuman

    Many PWC's with severe levels of illness may find it impossible to handle the daily tasks of living, from bathing, dressing, and grooming
to grocery shopping, cooking, laundry, basic light house cleaning, and driving to doctor's appointments or other errands. In these cases a PWC may want to consider the help of a Center for Independent Living (CIL).  These state or regional organizations can provide or locate Personal Assistant Services (PAS) sometimes also called Personal Care Attendants (PCA). CIL programs may be funded 100% by the state or they may be funded by Medicaid. Either way their goal is to help disabled adults (called Consumers) remain living independently in their own home.  Sometimes but not always there may be co-payments required. Services may be available for anywhere from a couple hours of help a week to full 7 day 24-hour help depending on the program and the client's level of functioning. PCA or PAS services are available to those living alone as well as those living with another family member or spouse, as long as the qualifying individual is an adult.
    The New England state where I live has an excellent CIL program. One arm of the program is supported by Medicaid for those who qualify. Another version of the program (called Home-Based Care) is entirely state funded and is available to disabled adults who do not qualify for Medicaid since their assets or income level (SSDI or job income) are above the Medicaid limits. Since these programs are unique in each state the rules, qualifications, and costs may change from year to year.
    When I applied for CIL services it was out of desperation. I was totally bedridden and living on my own was not possible yet I had no money to hire help. I also did not qualify for Medicaid. In the end there were two different programs to choose from in my state and I chose the "consumer-directed" program that let me hire my own PCA (though it meant having to handle the state-funded employer payroll myself). My other option was a program that would have sent me their own staff PCA staff (less paperwork for me but no choice in staffing).
    As a PWME/C,  I have used Consumer-Directed Personal Assistant Services (CD-PASS) for 2-1/2 years and can honestly say that without this help I would not be writing this article now or living in my own house. As a super independent person, I was initially uncomfortable with having to hire someone I didn't know and asking them to handle personal things. I was also concerned about whether I could find someone in the rural area that I live in who wanted PCA work since PCA wages are generally low and are not competitive with other non-skilled work. But I persevered and found a wonderful person to hire. Generally I use about 10 daytime PCA services a week though when I am in a severe bedridden relapse I utilize all 35 hours per week for which I am approved.    In addition I am approved for paying a PCA to stay nights and this has been very useful during my worst times and also when I want to try a new drug but am concerned about adverse reactions.
    Once I adapted to having PCA help I gained back a certain amount of my lost independence. For the first time in years, since the onset of my illness, I was able to have my basic needs met in a timely dependable way instead of being at the mercy of everyone else's busy schedules. The burden of my illness on my friends and family was greatly lightened. My diet has improved ten fold as I now have fresh food every week instead of having to rely on frozen and canned food. My PCA cooks the healthy recipes I request using the ingredients I ask her to use. My house is clean so I am no longer embarrassed to have visitors. I can count on getting to doctor's appointments or picking up prescriptions. Previously when friends or family visited I'd have to ask them for help with a long list of essential items, but with the PCA program, now I can simply enjoy having visitors.
    What I like about the consumer-directed program I use is that I have control over hiring and scheduling though that does involve some time
and energy. At first I was overwhelmed by the responsibility and paperwork of having to set up a payroll system. This task would be
simple if I were healthy, but when one is too sick to even sit upright or think straight it's a more difficult challenge. But the CIL service
often helps consumers put their payroll system in place and within a few months the PCA services had so greatly improved the quality of my life that handling the payroll quickly became a small concession.  Consumer-directed programs sometimes allow you to hire friends and
family members and in fact I use my PCA options to hire a friend to travel with me whenever I have a trip to an out-of-state medical center,
trips that otherwise would have been impossible for me to undertake. Not only have these services improved the quality of my life, but they've improved my functioning level as they help guard against the severe roller coaster of relapses. I am less tempted to try and do something beyond my abilities when I can count on someone showing up on a regular schedule to help. In addition I've been able to take on a few hours of work a week, again something that would have been utterly impossible if I were still struggling to make meals.
    Be aware that when you apply to a CIL you'll have to go through an interview process in which you have to describe precisely what sort of physical limits you have and how and why you need assistance. As we all know CFS does not fit the "typical" disability picture and some
questions you'll be asked don't make sense from a CFS stand point as questions may not be oriented toward a systemic fluctuating illness. Use your worst functioning level as a base line and be clear about why help will improve your overall quality of life. You may want to give the CIL medical reports to document your illness.
    I can't recommend CIL services and their associated PCA or PAS programs highly enough for PWC's who are really struggling to remain in their own homes. I'd encourage you to find out what programs your state has available and whether your level of illness and financial picture will let you qualify. If you don't qualify for Medicaid, don't let this stop you since some CIL programs are fully funded by the state and may not cost you anything and may allow much greater asset levels than Medicaid. Often there are waiting lists for these services so if you do qualify ask to get put on a waiting list right away.
    To locate the CIL organizations in your state contact the following two organizations:

National Council on Independent Living (NCIL)
1-877-525-3400 (Voice/TTY)

Independent Living Research Utilization (ILRU Program)
713-520-0232 (Voice)
713-520-5136 (TTY)

If by any chance the location where you live does not have CIL services or you do not qualify, then consider services available to seniors as
these services may also be available to disabled adults. There are some programs staffed by healthy seniors who will volunteer 4-8 hours a month to assist with groceries, driving, or light cleaning. To find out about all your options contact your state's Department of Human Services and ask for the Bureau of Elder and Adult Services, then inquire as to what kind of Home Care programs may be available.

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 * (781) 449-3535 Fax (781) 449-8606