Re: home health aides

December 5, 2003

Kendra,

I have hired friends a lot or became great friends w/those I have hired.

There is that fine line when someone can take advantage of you but i think the

key is to discuss that up front and say it wont be tolerated. i have learned

from my mistakes when i sympathize w/their financial situations or personal

lives, but learn from my mistakes. establish a pay rate that wont change

regardless of their needs, and make sure they know u r the boss. hiring friends

can

turn out to the best situation. right now a very good friend from high school

is helping me out while she is getting her RN. Shes very good, and has a

great work ethic. I think thats the key. To find someone who takes their job

seriously. I think nursing students r ideal b/c they have that incentive to

learn and master their skills. U might have to deal w/being the guinea pig

sometimes but its worth it. Well, feel free to ask me any other questions.

Kimi

December 5, 2003

When I came out to college, I hired two girls that I'd known in high school.

They've been fabulous! Very helpful and reliable. And we've become better

friends. I know " they " say not to hire friends, but it's worked out great for

me.

~e

December 5, 2003

i've been living on my own now (i.e. not with parents) for 6 years, and

i've hired my own attendants since the beginning... i am either friends

with the person before i hire them, or become friends with them after -- i

just feel it's nice to have someone work for you that you get along with

and enjoy being with. you just need to make your expectations clear from

the beginning...

and i saw you mentioned that you had a male attendant -- what are

everyone's feelings toward having opposite-sex attendants?? i know i've

had some issues...

Original Message:

-----------------

From: kendrascalia kendra@...

Date: Fri, 05 Dec 2003 19:34:49 -0000

Subject: home health aides

<tt>

I just got a new case manager through the dept. of social services and

they've recently begun allowing clients to hire their own health aides

or nurses. I'm VERY interested in this because the agencies in this

area are absolutely awful and the guy I have working with me right now

is annoying and doesn't do his job properly even though I keep telling

him every week what to do. I was thinking of looking into my friend

Becky, she's a nursing major and a junior at a local university. I'm

just a bit scared that 1...that sort of relationship will interfere

with our friendship or that our friendship will allow her to

manipulate her work, and 2...that it would ruin our friendship.

Have any of you hired friends to work with you? Is that something that

has worked out well? Also, she isn't in the area during the summer

time so I would have to find someone else. If I do go with one of her

friends (because she said she's interested but can't commit right now

and knows some others to ask) would that be something I should consider?

My services aren't too important. I can go a week without someone

coming. I just DO need someone to eventually come. Is dealing with

hiring your own help better than waiting on agencies?

~Kendra

</tt>

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<tt>

December 5, 2003

I absolutely HATE having a male aide. However, the department of

social services asked my permission first before hiring him from his

agency. Since I don't require any personal needs (all I need from an

aide is household work, linen changing, laundry, and dinner

preparation when not making microwavable foods ). I'm not really

comfortable with it too much since I've started with him *although

I've kept him for over a year now* mostly because it's a bit strange

having an older man washing my thongs and sexy little numbers. Besides

that, I just don't feel comfortable using the bathroom while he's here

(even though I don't require assistance) - I just don't trust him to

not walk in on accident (he's slightly mentally retarded so he doesn't

really _GET_ things unless told directly over and over) - and I am not

comfortable locking a bathroom door since it's the number one place I

tend to have falls. I definitely am more comfortable with, and will

only accept, female aides from now on.

~Kendra

> i've been living on my own now (i.e. not with parents) for 6 years, and

> i've hired my own attendants since the beginning... i am either friends

> with the person before i hire them, or become friends with them

after -- i

> just feel it's nice to have someone work for you that you get along with

> and enjoy being with. you just need to make your expectations clear

from

> the beginning...

>

> and i saw you mentioned that you had a male attendant -- what are

> everyone's feelings toward having opposite-sex attendants?? i know i've

> had some issues...

>

> Original Message:

> -----------------

> From: kendrascalia kendra@l...

> Date: Fri, 05 Dec 2003 19:34:49 -0000

>

> Subject: home health aides

>

> <html><body>

>

> <tt>

> I just got a new case manager through the dept. of social services

and

> they've recently begun allowing clients to hire their own health

aides

> or nurses. I'm VERY interested in this because the agencies in this

> area are absolutely awful and the guy I have working with me right

now

> is annoying and doesn't do his job properly even though I keep

telling

> him every week what to do. I was thinking of looking into my friend

> Becky, she's a nursing major and a junior at a local university. I'm

> just a bit scared that 1...that sort of relationship will interfere

> with our friendship or that our friendship will allow her to

> manipulate her work, and 2...that it would ruin our friendship.

>

> Have any of you hired friends to work with you? Is that something

that

> has worked out well? Also, she isn't in the area during the summer

> time so I would have to find someone else. If I do go with one of

her

> friends (because she said she's interested but can't commit right

now

> and knows some others to ask) would that be something I should

consider?

>

> My services aren't too important. I can go a week without someone

> coming. I just DO need someone to eventually come. Is dealing with

> hiring your own help better than waiting on agencies?

>

> ~Kendra

>

> </tt>

>

>

>

>

>

> <table border=0 cellspacing=0 cellpadding=2>

> <tr bgcolor=#FFFFCC>

> <td align=center>

> Sponsor</td>

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>

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>

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> m/cgi-bin/autoredir?camp=556 & lineid=3614674 & prop=egroupweb & pos=HM " ><img

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>

>

>

> <tt>

>

December 6, 2003

I always have a couple of PAs who are men. In some ways I prefer

it. They're usually stronger and more able to do my transfers

safely. They also, in general, are more respectful of my privacy...No

socially obligatory " girl talk " . They rarely ask for love-life advice and

don't cry on my shoulder while they are supposed to be working. Also, they

are not usually socialized by society to be nurturers, so while I might

have to start from scratch teaching them everything, they don't have

pre-conceived notions about how my care should be done. They learn it and

do it the way I ask.

I also have many women PAs with these same good qualities. The most

important qualities I'm looking for are an ability to follow directions,

physical strength to do my transfers, someone who will show up on time,

someone I enjoy spending time with, a good communicator...beyond this,

gender isn't an issue. Gender is about sexuality. My care isn't. Also,

I'm not shy about my body. Most guys have seen it before, and if they're

gay and amazingly haven't, they're no threat anyway. I avoid hiring

medically trained folk either male or female.

It's such an individual choice.

Alana

At 08:52 PM 12/5/03 -0500, you wrote:

>and i saw you mentioned that you had a male attendant -- what are

>everyone's feelings toward having opposite-sex attendants?? i know i've

>had some issues...

December 7, 2003

In a message dated 12/5/03 2:49:48 PM Eastern Standard Time,

kendra@... writes:

>>Have any of you hired friends to work with you? Is that something that has

worked out well?<<

DON'T DO IT!!! It will interfere with even the best of friendships. I made

this very

mistake about a year ago and she was the ONLY personal aide I ever had to

fire...she

lied to me, stole money and medications from our home, and treated the job

more

like a baby-sitting position for me than an assistant. The saddest part was,

yes, she

was a friend, but she was also the wife of our daughter's godfather. Needless

to

say, we no longer have any ties to either of them.

>>would that be something I should

> consider?<<

Hire someone you don't know, who doesn't know you, who will truly respect you

as

his/her BOSS, who you feel comfortable assigning tasks to, and build a

relationship

from there. It's not easy and can be pretty frightening and intimidating at

times, but

it honestly works out the best in the long run.

>>Is dealing with hiring your own help better than waiting on agencies?<<

The only true benefit I found to agency-hired help is they worry

about/provide backup personnel should an aide fail to show for an assigned

shift, but the

help can be just as unreliable and incompetent. Mind you, my experience with

agency-hired help is very limited...I just prefer hiring on my own.

Amy M. Marquez

Carol Stream, Illinois

Families of Spinal Muscular Atrophy - Vice President Chicagoland Chapter

Spinal Muscular Atrophy (SMA) - Type 1

Mom to le - Born July 19, 1999

Mom to ? - Born March/April 2004

Ella - Active Service Dog

Colette - Retired Service Dog

December 7, 2003

> Hire someone you don't know, who doesn't know you, who will truly

respect you

> as

> his/her BOSS, who you feel comfortable assigning tasks to, and build a

> relationship

> from there. It's not easy and can be pretty frightening and

intimidating at

> times, but

> it honestly works out the best in the long run.

I was talking to my sister and my best friend, who are living in the

dorms at univ as roommates and are neighbors to the friend I had in

mind of hiring. They both immediately said I shouldn't do it - just

from personal reasons that have arisen. I guess they don't trust her

competency this semester and they say when she is really worn out from

school work and clinical, she isn't the greatest person to be around. =\

I e-mailed the director of the nursing department at univ asking if

they would be able to recommend some students, and explained my

situation. Hopefully they'll get back to me sometime this week.

> >>Is dealing with hiring your own help better than waiting on

agencies?<<

>

> The only true benefit I found to agency-hired help is they worry

> about/provide backup personnel should an aide fail to show for an

assigned shift, but the

> help can be just as unreliable and incompetent. Mind you, my

experience with

> agency-hired help is very limited...I just prefer hiring on my own.

I have only worked with agency help and it hasn't been a good

experience what-so-ever since I've moved away from my home town. I

haven't found this experience to be true for me - when my aide can't

make it and he knows in advance (such as a doctor's appointment) they

won't send anyone else and the agency won't even call me to notify me

until the morning of the day I have scheduled help!

~Kendra

February 17, 2004

I also wanted to mention that my mom has been fighting for months to

get me a full electric bed because I need it low to make getting in

easy but then higher to get out. I've been struggling for quite some

time to pull myself into a sitting position and then out of bed and

into the wheelchair. Some mornings I just don't go places because I

literally don't have the strength to just sit up or to pull myself up

anymore. This guy from ILC made a few phone calls and overnight had an

electric bed here. Besides the mattress not being as comfortable as my

last mattress, it's been such a blessing. Getting up in the mornings

is not so hard and I don't dread waking up as much as before. It's

amazing how bearable a morning can be when you take away small

obstacles that seem like mountains for some of us!

=)

> Okay, it's been a month without help and I'm getting desperate. I'm

> working with the Independent Living Center and Dept. of Social

> Services. We are have no luck what-so-ever. I've been doing my laundry

> every other week on my own. It is extremely difficult and I'm sure

> quite awkward to see a little girl struggling to push a basket of

> clothes from the 4th floor to the elevator and down to the laundry

> room and then one by one putting clothes into a washing machine with a

> reacher claw! (Not to mention the full 4 hours just to wash and dry

> because it takes forever and then makes me want to pass out!)

>

> I finally just broke down and asked my friend if I could hire her.

> She's willing to do it. I'm just worried about ruining a friendship. I

> trust her enough to not take advantage of me and I don't think she's

> the type of person to do that, I just would really hate to see it

> spoil because we may encounter issues working together. Although, now

> I can request more hours because she's willing to help with my

> shopping needs as well. (Which I need more hours but they insist I

> can't have more without more things to do.)

>

> Also, the guy I'm working with at the ILC has CP and he says he

> believes that he can convince DSS to push me up to a level 3 care plan

> - for now I'm strictly home health aide work - and whether I need it

> now or not (DSS doesn't need to know it) I'll always have backup hours

> and needs I can request if I need the extra help. Pushing it up to

> this level not only allows me to hire TWO people (backup purposes)

> but also pays them $9/hr instead of $8 ...which is not much, but more

> of an incentive on their end to work and to be responsible.

>

> I'm really glad I met this guy at the ILC though. He's helping me with

> a lot of things - like to argue on my behalf for my tilt/recline, head

> rest, and seat raiser on my new wheelchair, and to push for another

> opportunity at driving lessons (I went this summer for 2 days but the

> place only had one accessible vehicle I could get into and then that

> vehicle only had one set up which I wasn't strong enough to use - so

> they stopped my lessons, but since VESID paid for 20 lessons they are

> refusing to let me go to another place and insisting I have to use

> them up there even though they don't have the necessary equipment!!),

> and this guy also believes I ought to move downtown Albany (I'm right

> outside of the city now) because he knows of accessible and affordable

> housing that is one block from SUNY Albany and one block from the

> government buildings so I can manage going to work without

> transportation needs and also continue my graduate studies with VESID

> help (since they're refusing to sponsor me any loonger than my

> four-year degree requires).

>

> Hopefully he'll come though with his promises. He's in the same

> situation, or once was, and is fully dependent on others for care. He

> seems personally and emotionally invested in his work and has concern

> for me - he'll just call to say hi or see if I need some help. He'll

> send over one of his aides during his care time to help reach things

> or pick up books that dropped!!!! He's also very well connected with

> people in authority in places that work with the disabled community

> and offer financial funding for education and transportation and

> work-related needs.

>

> Well, I just wanted to say...hmm...a lot. hehehe.... mostly,

> finally I'll have a regular attendant and it's a personal friend so

> I'm not worried about work ethic, just hoping obligatory hours with me

> won't ruin a friendship. (She gets paid to take me to the

> mall...doesn't seem like a bad thing imo! LOL)

>

> ~Kendra

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