AVOIDING Attendants from HELL A Practical Guide to Finding Hiring & Keeping Personal Care Attendants. 2nd Edition

June Price was born in 1947 with spinal muscular atrophy, type II (SMA-II), a rare, neuromuscular disease. Never able to walk, she relies on a power chair and needs assistance with all her personal care. June lived with her parents until February, 1980, at which time she became one of the first physically disabled adults in Milwaukee, Wisconsin, to move into a wheelchair accessible, low-income apartment complex for disabled and elderly people. Initially, June only needed PCAs to come in for her care morning and night, as she was able to man-age on her own during the day (albeit with tremen-dous effort). These workers were neighborhood woman with small children who welcomed cash payments and short work hours. She met toileting needs with an external, urinary device she co-invented and still uses today. In 1988, June moved into a new apartment com-plex geared to people with physical disabilities. A two-bedroom apartment made it possible to hire a live-in attendant as she now needed nighttime repo-sitioning. College students were a perfect fit for this position which offered housing, salary and days free for outside work or school. By 1995, home health aides were brought into the equation for mealtime and toileting assistance. Unlike the privately-hired overnight workers, the home health aides are agency-hired, and the case is managed by a nurse. Since 1991, June has used a BiPAP S/T ventilator with a nasal mask to help her breathe during the night. In 2000, she had a PLV-100 volume ventilator put on her wheelchair which she uses as needed with a mouthpiece attachment. As her care needs have increased, she reduces the potential of worker burnout by hiring three col-lege students to share the weekly, overnight sched-ule, each working 1-3 nights per week, in lieu of one live-in. (See Chapter 14 for "The 'Live-Out' Live-In." June's literary credits include articles for New Mobility and MDA's Quest. She founded and edited Living SMArt, an international newsletter for people with spinal muscular atrophy.