Day Programs

[Guest guest]

Can I just vent a little here?

I'm a little afraid that one of these days, I'm gonna get a call from my

daughter's community day program, saying they don't want her anymore because of

'behaviors' (yelling, screaming, and incessant scripting mostly).

One of 's PSWs, the one who always picks her up from her day program in the

afternoon (and then goes with her to a health club for swim etc) came in early

yesterday because her day job/school job is on Spring Break. Anyway, she walks

in about an hour early to pickup Miss , and the staff person on the floor

sees her and apparently says, rather loudly, 'Oh God Bless, is here!'.

Not exactly the attitude I like to hear from the day program staff, and this

isn't the first time has repeated comments they make to her about my

daughter (to the effect of 'we don't know how you do it', or 'there's a special

place in heaven for you, ' etc.) Even in adulthood it pains me to know

that staff and peers don't like my girl!!!!

Also, they don't call me with any of their issues or questions, they are venting

to and questioning . Now we love , and yes, she works with young

kids with autism every day at the private school as a teaching assistant...but

still, she's twenty years old and it distresses me that they don't feel

comfortable enough with me to just come to me with the concerns.

I remember when first started there, and I used to pick her up at the end

of the day and she was screaming when I walked in -- and I heard staff and peers

scolding her " , BE QUIET! " , which, for those of you who live with autism,

doesn't really work well as a strategy -- and the floor staff looked at me and

said 'Don't worry, she just has to get used to the way we do things here'.

Possibly the look of disbelief that flooded my face put the kabosh on ever

talking candidly with me again!

This is a problem. What may be complicating ours further is that staff on the

floor (the frontline) may be hearing from the Q or others (staff in the offices)

that the mom knows people at the top of the organization (offices in other

buildings)....so don't complain or ask too many questions of the mom. I don't

want to go to the top. I want to work with the people on the frontlines. But

I'm not sure they really want to work with me. Looking at it from their

perspective, I get that. They don't get paid enough (no one's fault, well,

maybe the state) and they're stretched so thin and many have been working in

these jobs for a long time...so they're possibly burned out, used up, etc to the

point where learning new strategies seems like the last thing they want to do.

I get that. I'm sure they're good people.

Here's the question for my IPADD Think Tank:

How have any of you resolved this sort of issue with your day program's front

line staff? And is there such a thing as saving the situation once the front

line staff have decided this client is a troublemaker or just a pain in the

you-know-what? I know I've let this go on, as is, for too long and want to do

something now if I can to make this better. Thoughts?

Laurie

[Guest guest]

Laurie, I could write your letter. I'm afraid of the exact same things with my

daughter.

>

> Can I just vent a little here?

>

> I'm a little afraid that one of these days, I'm gonna get a call from my

daughter's community day program, saying they don't want her anymore because of

'behaviors' (yelling, screaming, and incessant scripting mostly).

>

> One of 's PSWs, the one who always picks her up from her day program in

the afternoon (and then goes with her to a health club for swim etc) came in

early yesterday because her day job/school job is on Spring Break. Anyway, she

walks in about an hour early to pickup Miss , and the staff person on the

floor sees her and apparently says, rather loudly, 'Oh God Bless, is

here!'.

>

> Not exactly the attitude I like to hear from the day program staff, and this

isn't the first time has repeated comments they make to her about my

daughter (to the effect of 'we don't know how you do it', or 'there's a special

place in heaven for you, ' etc.) Even in adulthood it pains me to know

that staff and peers don't like my girl!!!!

>

> Also, they don't call me with any of their issues or questions, they are

venting to and questioning . Now we love , and yes, she works with

young kids with autism every day at the private school as a teaching

assistant...but still, she's twenty years old and it distresses me that they

don't feel comfortable enough with me to just come to me with the concerns.

>

> I remember when first started there, and I used to pick her up at the

end of the day and she was screaming when I walked in -- and I heard staff and

peers scolding her " , BE QUIET! " , which, for those of you who live with

autism, doesn't really work well as a strategy -- and the floor staff looked at

me and said 'Don't worry, she just has to get used to the way we do things

here'. Possibly the look of disbelief that flooded my face put the kabosh on

ever talking candidly with me again!

>

> This is a problem. What may be complicating ours further is that staff on the

floor (the frontline) may be hearing from the Q or others (staff in the offices)

that the mom knows people at the top of the organization (offices in other

buildings)....so don't complain or ask too many questions of the mom. I don't

want to go to the top. I want to work with the people on the frontlines. But

I'm not sure they really want to work with me. Looking at it from their

perspective, I get that. They don't get paid enough (no one's fault, well,

maybe the state) and they're stretched so thin and many have been working in

these jobs for a long time...so they're possibly burned out, used up, etc to the

point where learning new strategies seems like the last thing they want to do.

I get that. I'm sure they're good people.

>

> Here's the question for my IPADD Think Tank:

> How have any of you resolved this sort of issue with your day program's front

line staff? And is there such a thing as saving the situation once the front

line staff have decided this client is a troublemaker or just a pain in the

you-know-what? I know I've let this go on, as is, for too long and want to do

something now if I can to make this better. Thoughts?

>

> Laurie

>

>

>

>

>

>

[Guest guest]

Laurie,

Unfortunately one size does not fit all. The State pays the same rate to

providers for day programming services even though the disabled person may have

a need for a higher staff ratio due to their behavioral or other issues.

Because of the same rate structure, some agencies will decline to serve a person

with high needs because they cannnot hire additional staff with the current rate

structure. However, if the agency (assuming a progressive agency) and the

parent work together, and determine that the disabled person needs a specific

rate to address his or her intense needs, then the parent can contact me and

strategize how to get the State to raise the rate for that particular

individual. As the result of litigation filed by me on behalf of numerous

individuals with specific intense disabilities, the State has increased the rate

for those particular individuals. Remember, these are Medicaid programs and

Medicaid means medical assistance and your child is entitled to all the

assistance he or she needs to address their particular disability.

Bob Farley

Attorney At Law

630-369-0103

farleylaw@...

www.farley1.com

[Guest guest]

I just read Laurie's post on and I am sick to my stomach, thinking of

sweet and wonderful in a room with too darn many people, not enough

personal attention to get her communication or any other needs met and probably

few options beyond what sounds to me like a very inadequate and inappropriate

" program. " I am not sure how productive a group of over 20 (Laurie's says 35-40

people in a room) people with disabilities can be with 3 staff...The classic

workshop/DT setting is completely inappropriate for most of our loved ones who

have disabilities and most especially for those who have autism.

It sounds to me like staff is not very good, but at the very least, what they

should be doing is communicating with you. I am not so sure this is salvageable

because I am doubtful that this is a good place for , but if you want to

make it work, you really must have open dialogue.

Since it appears to have been going on for some time, I probably would go to the

top...the person with the most authority to make changes if you plan on keeping

in this program.

To be honest, if I were you, I would be thinking about other options...I know

those options are limited in various geographies. There are some dynamite but

expensive day program options in my area. It might be worthwhile for a small

group of families to get together and make a day field trip to see Keshet's

Gadol Program, Anixter Center's ACT Program and C.E.L.'s ELA Program. There is

also a new program that is slightly less costly, Our Place of New Trier

Township. There is also Arts of Life in Glenview...and that is run on DT type

funding...and it is amazing.

I also know that you, Laurie, get the value of competitive employment vs. day

programs...Making money or at least breaking even with the cost of a support

person and paid employment is often a better option for folks with disabilities

than a workshop setting. The challenge, of course, is in getting and keeping a

job...

Laurie, perhaps would be loud in any and all settings, I don't know her

well enough to know that. I think any of us would be pretty unhappy being with

people who don't like or respect us. It is also possible that she is bored and

unchallenged. Just my two cents...

Ellen

Ellen Garber Bronfeld

egskb@...

[Guest guest]

One of my sons is in a program and I have had a few minor issues. One of the

concerns I had is no communication. When I first mentioned it, I was told that

they would call me with any issues. Very few calls, of course. My wonderful

case manager asked me about communication at the annual meeting and I said it

was hard because I don't know what does all day; he can't tell me and I

don't even know if he has a bad or good day. Someone at the agency suggested a

small check list which is a huge help. It just has a few lines which can be

checked yes/no and room for a comment by the staff. I LOVE IT and it makes me

feel very positive about the program. They probably fit five of these

checklists on one 8 x ll paper, but it is communication about MY son. I can try

to copy or scan it if you want to see it.

Pam/Chicago

> >

> > Can I just vent a little here?

> >

> > I'm a little afraid that one of these days, I'm gonna get a call from my

daughter's community day program, saying they don't want her anymore because of

'behaviors' (yelling, screaming, and incessant scripting mostly).

> >

> > One of 's PSWs, the one who always picks her up from her day program in

the afternoon (and then goes with her to a health club for swim etc) came in

early yesterday because her day job/school job is on Spring Break. Anyway, she

walks in about an hour early to pickup Miss , and the staff person on the

floor sees her and apparently says, rather loudly, 'Oh God Bless, is

here!'.

> >

> > Not exactly the attitude I like to hear from the day program staff, and this

isn't the first time has repeated comments they make to her about my

daughter (to the effect of 'we don't know how you do it', or 'there's a special

place in heaven for you, ' etc.) Even in adulthood it pains me to know

that staff and peers don't like my girl!!!!

> >

> > Also, they don't call me with any of their issues or questions, they are

venting to and questioning . Now we love , and yes, she works with

young kids with autism every day at the private school as a teaching

assistant...but still, she's twenty years old and it distresses me that they

don't feel comfortable enough with me to just come to me with the concerns.

> >

> > I remember when first started there, and I used to pick her up at the

end of the day and she was screaming when I walked in -- and I heard staff and

peers scolding her " , BE QUIET! " , which, for those of you who live with

autism, doesn't really work well as a strategy -- and the floor staff looked at

me and said 'Don't worry, she just has to get used to the way we do things

here'. Possibly the look of disbelief that flooded my face put the kabosh on

ever talking candidly with me again!

> >

> > This is a problem. What may be complicating ours further is that staff on

the floor (the frontline) may be hearing from the Q or others (staff in the

offices) that the mom knows people at the top of the organization (offices in

other buildings)....so don't complain or ask too many questions of the mom. I

don't want to go to the top. I want to work with the people on the frontlines.

But I'm not sure they really want to work with me. Looking at it from their

perspective, I get that. They don't get paid enough (no one's fault, well, maybe

the state) and they're stretched so thin and many have been working in these

jobs for a long time...so they're possibly burned out, used up, etc to the point

where learning new strategies seems like the last thing they want to do. I get

that. I'm sure they're good people.

> >

> > Here's the question for my IPADD Think Tank:

> > How have any of you resolved this sort of issue with your day program's

front line staff? And is there such a thing as saving the situation once the

front line staff have decided this client is a troublemaker or just a pain in

the you-know-what? I know I've let this go on, as is, for too long and want to

do something now if I can to make this better. Thoughts?

> >

> > Laurie

> >

> >

> >

> >

> >

> >

[Guest guest]

Wow Laurie, that's a tough road really. I understnad that the thing we all fear

is if we stand up for our children, then thre may be retaliation.

However, SHAME ON THEM!!!!!! They should NEVER say stuff like that, whether

they think it or not! You know, I'm an RN at the veterans hospital, and I have

dealt with more than my share of behaviors. But I would NEVER, say any of those

type things to either my patients or their families. Have I ever thought it in

my own mind- yes, for sure, but it was my choice to work as a nurse, and I gotta

know when to call it quits, if I ever cannot handle the situation. That is not,

a cross for my patients to bear.

Personally, staff should be fired for that type of continued " behaviors " (

meaning the smart remarks). And at $100 a day to the client/ familie? Granted,

I know the staff doesn't get paid nearly what good staff working in that

capacity should earn, but still.

Diane S

>

> Can I just vent a little here?

>

> I'm a little afraid that one of these days, I'm gonna get a call from my

daughter's community day program, saying they don't want her anymore because of

'behaviors' (yelling, screaming, and incessant scripting mostly).

>

> One of 's PSWs, the one who always picks her up from her day program in

the afternoon (and then goes with her to a health club for swim etc) came in

early yesterday because her day job/school job is on Spring Break. Anyway, she

walks in about an hour early to pickup Miss , and the staff person on the

floor sees her and apparently says, rather loudly, 'Oh God Bless, is

here!'.

>

> Not exactly the attitude I like to hear from the day program staff, and this

isn't the first time has repeated comments they make to her about my

daughter (to the effect of 'we don't know how you do it', or 'there's a special

place in heaven for you, ' etc.) Even in adulthood it pains me to know

that staff and peers don't like my girl!!!!

>

> Also, they don't call me with any of their issues or questions, they are

venting to and questioning . Now we love , and yes, she works with

young kids with autism every day at the private school as a teaching

assistant...but still, she's twenty years old and it distresses me that they

don't feel comfortable enough with me to just come to me with the concerns.

>

> I remember when first started there, and I used to pick her up at the

end of the day and she was screaming when I walked in -- and I heard staff and

peers scolding her " , BE QUIET! " , which, for those of you who live with

autism, doesn't really work well as a strategy -- and the floor staff looked at

me and said 'Don't worry, she just has to get used to the way we do things

here'. Possibly the look of disbelief that flooded my face put the kabosh on

ever talking candidly with me again!

>

> This is a problem. What may be complicating ours further is that staff on the

floor (the frontline) may be hearing from the Q or others (staff in the offices)

that the mom knows people at the top of the organization (offices in other

buildings)....so don't complain or ask too many questions of the mom. I don't

want to go to the top. I want to work with the people on the frontlines. But

I'm not sure they really want to work with me. Looking at it from their

perspective, I get that. They don't get paid enough (no one's fault, well,

maybe the state) and they're stretched so thin and many have been working in

these jobs for a long time...so they're possibly burned out, used up, etc to the

point where learning new strategies seems like the last thing they want to do.

I get that. I'm sure they're good people.

>

> Here's the question for my IPADD Think Tank:

> How have any of you resolved this sort of issue with your day program's front

line staff? And is there such a thing as saving the situation once the front

line staff have decided this client is a troublemaker or just a pain in the

you-know-what? I know I've let this go on, as is, for too long and want to do

something now if I can to make this better. Thoughts?

>

> Laurie

>

>

>

>

>

>

[Guest guest]

.. As the result of litigation filed

> by me on behalf of numerous individuals with specific intense disabilities,

> the State has increased the rate for those particular individuals.

Bob,

This is GREAT information to know. Wish I would have known this over a year ago

when our son was having great difficulties at the d.t. program he was at. I'll

have to keep this for future reference if he EVER does any kind of program

again.

Liz

[Guest guest]

>

> Can I just vent a little here?

Laurie,

I almost cried when I read your post about . Some of that sounded all too

familiar with . Not where he was told to shut up by the dt staff, but I knew

they wish he would....cause I wish every day for a little less constant talking.

Hopefully will qualify for the services from SST. I so wish it would have

been around & we'd have known about it last year. Let us know how it goes.

Liz

[Guest guest]

Hi Laurie, I am in my infancy of understanding everything that is written here

as this is the first time I am writing to what I have read and have the chance

to respond to it. I'm currently on spring break and I have a little more time

to read up on here. I really want to understand everything that I need to as my

boys are graduating this May and I'm anxious about not knowing what to do next

and how to prepare for the future. However, my main intention right now is to

respond to what you have written about the lack of feedback you are getting in

the day program. What a chronic problem this is and one that I have struggled

with throughout the boys school years. Coming from the other side, I know that

providing feedback can be a hectic end of the day activity that as an OT I am

constantly trying to figure out how to do in a way that's easiest for me and

informative for the parents. I know how very very important this is and it can

prevent so many problems down the road when parents are informed. The one thing

that I have learned is that communication should always go two ways and that if

you want it, you should take the time to give it too. It always helps to know

what's easiest for the teacher...email, phone, notes, etc. I have developed my

own checklists and sent them in and asked the teacher if there's any changes

they would make to it to make it easiest for them and would they be willing to

use it? This year the boys are writing their own feedback which tells me what

they did during the day. It's a routine form and it's something I can ask them

about so they can tell me something about their day too. I know this kind of

thing isn't for everyone, but I have been happy with it. I think the best thing

is always to have an open talk with staff about how things are going and what

you might be able to help with. Do they need any materials, specific items,

strategies? If staff has told me about a problem (when I have asked), I will

most likely have a strategy that I use at home that I will send in to ask them

to try it out and let me know if it helps. I will be the one to follow up and

ask them if it did help and then try something else if they find out it doesn't

work. I don't believe it is ever too late to try and communicate with staff if

it's always presented in a non threatening way. We are both working together to

make life better for your child and yes, better for the staff because your child

will benefit from that too. It does sound like the ratio is not so good and that

will interfere with feedback, but if you ask them if there is some way you could

have communication about the one thing that creates a challenge in the day (I'm

not sure what this would be as I don't know ), that you both could work on

helping and what specifically would identify a " good " vs " hard " day, it might

give the staff some direction and you some comfort in knowing that if there is

an issue, people are working on it and making it better. For my boys I have

used stickers as a visual (at home) and then an incentive when they get enough.

So the teacher would need to communicate how they did for the day, then I would

be responsible for providing the sticker and the incentive and all the staff

would do is give me the daily feedback. The hard part is how to make evaluating

the day specific enough. You'd just have to come up with something that

identifies an improvement and also not expect perfection every day. It's work in

progress. I don't know if any of this is helpful, but I wanted to respond to

something that I've struggled with through many years and try and try to improve

on.

>

> Can I just vent a little here?

>

> I'm a little afraid that one of these days, I'm gonna get a call from my

> aughter's community day program, saying they don't want her anymore because of

> behaviors' (yelling, screaming, and incessant scripting mostly).

>

> One of 's PSWs, the one who always picks her up from her day program in

> he afternoon (and then goes with her to a health club for swim etc) came in

> arly yesterday because her day job/school job is on Spring Break. Anyway, she

> alks in about an hour early to pickup Miss , and the staff person on the

> loor sees her and apparently says, rather loudly, 'Oh God Bless, is

> ere!'.

>

> Not exactly the attitude I like to hear from the day program staff, and this

> sn't the first time has repeated comments they make to her about my

> aughter (to the effect of 'we don't know how you do it', or 'there's a special

> lace in heaven for you, ' etc.) Even in adulthood it pains me to know

> hat staff and peers don't like my girl!!!!

>

> Also, they don't call me with any of their issues or questions, they are

> enting to and questioning . Now we love , and yes, she works with

> oung kids with autism every day at the private school as a teaching

> ssistant...but still, she's twenty years old and it distresses me that they

> on't feel comfortable enough with me to just come to me with the concerns.

>

> I remember when first started there, and I used to pick her up at the

> nd of the day and she was screaming when I walked in -- and I heard staff and

> eers scolding her " , BE QUIET! " , which, for those of you who live with

> utism, doesn't really work well as a strategy -- and the floor staff looked at

> e and said 'Don't worry, she just has to get used to the way we do things

> ere'. Possibly the look of disbelief that flooded my face put the kabosh on

> ver talking candidly with me again!

>

> This is a problem. What may be complicating ours further is that staff on the

> loor (the frontline) may be hearing from the Q or others (staff in the

offices)

> hat the mom knows people at the top of the organization (offices in other

> uildings)....so don't complain or ask too many questions of the mom. I don't

> ant to go to the top. I want to work with the people on the frontlines. But

> 'm not sure they really want to work with me. Looking at it from their

> erspective, I get that. They don't get paid enough (no one's fault, well,

> aybe the state) and they're stretched so thin and many have been working in

> hese jobs for a long time...so they're possibly burned out, used up, etc to

the

> oint where learning new strategies seems like the last thing they want to do.

> get that. I'm sure they're good people.

>

> Here's the question for my IPADD Think Tank:

> How have any of you resolved this sort of issue with your day program's front

> ine staff? And is there such a thing as saving the situation once the front

> ine staff have decided this client is a troublemaker or just a pain in the

> ou-know-what? I know I've let this go on, as is, for too long and want to do

> omething now if I can to make this better. Thoughts?

>

> Laurie

>

>

>

>

>

>