by Michelle Byrd
Janice Ward was diagnosed with M.S. in 1980, one week before starting nursing school at UMass-Amherst. Her symptoms included double vision, fatigue, balance and coordination problems. After receiving this devastating diagnosis, Janice had to leave the nursing program, however, she was able to transfer to UMass-Boston to finish her education, studying Psychology and Sociology. At the time, Janice said she didn't know the extent to which her disease would place limits on her life or how difficult it would be to maintain her independence. Trying to live independently and find the care she required would soon become a major challenge.
Janice's first introduction to home care assistance came in the form of homemaker services provided by an agency. This soon became problematic since it was always difficult for her to get help for as many hours as she needed and many times the homemakers were unreliable and would not show up for work. When she complained about this to the agency, the response she received from an administrator was "some of my people don't have any help, so you're lucky".
Her next experience wasn't any better. Home health aides were available to assist her with personal care issues; however, they were not able to help her with the instrumental daily living activities (I.A.D.L) such as laundry, meal preparation and general house keeping she required. When Janice experienced a major exacerbation of her disease, leaving her so weak she was bedridden and sometimes unable to use the left or right side of her body, she found that she did not have access to the complete level of care she needed. A homemaker could not attend to the personal care needs her disease flare-up caused, and a home health aid was not able to provide her with on-going assistance with house keeping chores.
When Janice became part of the PCA program back in 1985, all of this changed. A personal care attendant or PCA could care for both her personal care as well as assist her with daily living tasks. More importantly, the program allowed her to "have a say over how things in my house are done" and this was important for a young woman creating her own independent life. Janice believes it is important that the PCA program remains consumer run. This consumer model, which Massachusetts pioneered, does have its challenges. Janice reports that she has had difficulty hiring and retaining PCAs due to low wages. While her current primary PCA has been with her for some time and everything is going well she expresses concern regarding the low wages PCAs receive. "How do you maintain quality people when the pay is so low?" Janice asked. Janice expressed her anxiety about not having adequate PCA coverage especially in the case of an emergency. In the past, friends have helped out when a PCA did not show up, however she cannot always rely on their help. Janice has had some success in using student employment offices as well as Craig's List but still finds it difficult finding working PCAs. She said that she looks forward to the Council developing a PCA referral directory. She would sleep better at night knowing there was another possible resource for consumers to secure help for the hours they are approved for as well as to cover emergencies.
Janice said that the process of being an employer in the PCA program has been a learning process. She has learned some good strategies for hiring PCAs. She always asks for references from potential workers and checks them herself. She also supports C.O.R.I. background checks for PCAs.
Janice has lived independently since 1984 and has been a resident of the South End since 1988. She currently volunteers at the South End Technology Center where she is also learning grant writing. She hopes to become a grant writer for non-profits. Janice provides peer counseling at a local hospital and is involved with a number of advocacy and activist issues around disability issues. She is a member of the Consumer Quality Care Council of Health Care for All and the Boston Center for Independent Living's action and advocacy group. When thinking about her future, she expressed her appreciation for the PCA program saying, "I don't want to live in a nursing home." She feels she is not alone in this. She shared a quote that said "we are all temporarily able bodied". As many baby boomers age, they may find themselves with disabilities that require them to use the PCA services.
Multiple sclerosis (or MS) is a chronic, often disabling disease that attacks the central nervous system. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. The progress, severity, and specific symptoms of MS are unpredictable and vary from one person to another. Some people with M.S. experience clearly defined attacks of worsening neurological function. These attacks -- which are called relapses, flare-ups, or exacerbations are followed by partial or complete recovery periods or remissions.
When Hurricane Katrina struck the city of New Orleans on August 29, 2005, hundreds of people with developmental disabilities were displaced. Roads were severely crowded or impassable. Cell phones didn't work. Many didn't know where their family members were. And yet direct support professionals, people doing the same work that PCAs do in Massachusetts, stayed with those they supported and made sure everyone evacuated to higher ground. For months, these dedicated women and men, working long hours for low pay, put others before themselves, providing care and support with improvised resources. View a video clip about these remarkable workers.