Pioneer Pointers is a chance for DMD Pioneers to share their experiences with people affected by DMD. This edition focuses on Attendant and Nursing Care.
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I live in a home and most of my care is provided by certified nursing assistance (CNAs), but I also receive some care from RNs, Lens, and respiratory therapists. My stay at the nursing home is paid for by Medicare and the state insurance access. The care is monitored by both state and federal inspectors who come by about once a year for an inspection. A certain standard is required for this kind of facility so I get adequate care usually.
David Ralph (Arizona)
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I have in-home nursing care through a nursing agency. I get 16 hours of care a day (8 hours during the day, 8 hours at night). Most of my nurses are LVNs. My parents help me the other 8 hours. All my care is paid for by Medi-Cal (California's version of Medicaid). Medicare does not pay for any of my nursing care.
You meet all types of people in in-home heath care. Overall, most of my nurses have been very good; a have had a few rotten apples. Two of my nurses have been with me 10 years. I've had a few nurses with bad attitudes and some have stolen from me. One nurse, I let go because he was stealing my medication; another couldn't take any criticism from my other nurses, even if it was helpful criticism; he thought he knew it all and didn't have to be told anything. I guess he thought he was never wrong, even when he was. Another nurse I had was a pathological liar; he claimed he was a medic with the Green Berets and Delta Force and told of his missions all over the world. The only problem is that the years he did all these things didn't match up with his age. I could go on and on.
John Herrmann (California)
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Last year we had an aid that came in for 2 hours a day (M-F) who split the time between Nathan and Alex. I had to let her go for mistreating the boys last February and we didn't have one till summer. I told them we wouldn't need one till school started in August. We got one in September who helped Nathan. We had one for Alex but she only lasted one day. Nathan's aid quit last Monday so we don't have anyone right now. It is hard to find anyone who wants to come in at 5 am. Our nursing is covered through Medicaid waiver.
Terri
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I receive 25 hours of attendant care services each week to Virginia Medicaid, provided by an agency here in Virginia. I am eligible for 30 hours per week, but because I can get no more than six hours per day, Monday through Friday, and cannot get anyone reliable to come at night I can only use 25. I tried having an attendant coming four hours every morning and two hours at night, but more often than not no one was available at night or they were unreliable. I don't really need six hours in the morning, but discovered that five hours worked well. Unfortunately, I get six hours per day and am not permitted to have any more than that in one day. It makes absolutely no sense, considering it costs the same amount.
Monday through Friday I have an attendant from 8 AM until 1 PM, which covers everything including eating breakfast, toileting, watching, dressing, getting out of bed, teeth brushing and lunch. My mom and/or dad are around during the day, but usually I only need help with restroom, snacking and drinking. Usually, my dad gets me in bed and my parents usually split who gets me up on the weekends.
Trying to keep someone reliable is very difficult. I'm lucky my current attendant actually shows up basically on time everyday and has been coming since April. I had one of my attendants for 1 1/2 years; she had to leave because she was about seven months pregnant. Between her and my current attendant I had a revolving door characters, through. I discovered that I can give attendants much leeway and when I see they are not going to work out I need to contact the agency immediately. Some problems I've had include an attendant who never had us sign a timesheet and apparently forged my parents signatures (we are no longer with an agency), people who cannot speak or understand English, people with mental deficiencies and one attendant who decided unilaterally that he would only come for four hours. I could go on.
Jeff McAllister (Virginia)
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I live on my own, so all my hours are covered by nurses and PCAs. 16 1/2 hours of nursing and the rest by PCAs. I have PCA that's been with me for 5 years. She drives me crazy at times but as a PCA she has been the most reliable and consistent of them all. I've had all different types. I had a transvestite for 3 years. She or he wasn't to bad except for her impatience and talking about her sex life at the most inappropriate times. I had PCA that was bipolar, drug addict, drug dealer. I got rid of her quickly. I've had many more characters that I could on and on about. I've had two of my nurses for 14 and 17 years through the thick and the thin. My nurses are paid thru MediCal (Medicaid) and my PCAs are paid by a state program called In Home Support Services (IHSS).
Joe (California)
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I hire and train my own Personal Care Assistants and receive funding to pay for the PCA salaries through Medicaid. I do not have any skilled nursing care (i.e. LPN, RN, CNA). I also do not have Medicare.
I have PCA coverage through MassHealth (Massachusetts Medicaid). They split up the hours allocated into daytime and overnight hours. I receive 70 hours per week of daytime coverage (10 hours per day) and they give the equivalent of 14 hours per week as the overnight coverage (2 hours of pay per night to cover the period from 12 a.m. to 6 a.m.). So I end up with 16 hours of time covered for a 24-hour period. The other eight hours per day I do not have and do not need any assistance.
I know that if you have a trache MassHealth requires a certain number of hours for skilled nursing care for maintaining and caring for the trache. I do not have a trache, so I do not know how many hours are given for skilled nursing care. I do know that they reduce the number of PCA hours by the amount of hours they give you for skilled nursing care.
Scott (Massachusetts)
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In my case, I receive Medicare as a disabled survivor of my father who passed away several years ago. However, Medicare won't fund long-term home health aids. As a resident of Florida, I'm eligible for some Medicaid waiver programs if my medical bills exceed a certain percentage of my income, but I don't currently qualify.
My daily needs are taken care of by my fiancée, who I can't legally marry because it would likely disqualify me for the bit of medical coverage Medicare does provide.
Jonathan Hinek (Florida)
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We received no personal care assistance. I was David's primary caregiver, with help in bathing and bathrooming and lifting from my husband (Dave's stepfather). While at times it got rough, especially after he got a trache, we managed to get by, albeit a bit sleep-deprived. I found out a week before he passed away that we were eligible for an assistant that would be paid for through the state.
Deborah Overby (Dave Bartlett's mother)
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I'm in the same situation as Scott. Currently I have 3 part time attendants. I'm allowed 23 and a half hours a week. Two of my attendants are neighbors who live one house away so it's very convenient for both them and myself especially in the winter when traveling in snow can be a major problem. My other attendant lives within five minutes drive so that's also a big plus. All of them are extremely reliable and honest individuals. I'm very fortunate in this respect. I've never had to hire somebody that I didn't know. My main attendant has worked for me for over 11 years now.
Alan Adams (Pennsylvania)
