Re: Re: Day Programs

[Guest guest]

I don't have in a program like this " yet " but how would you have handled it

if it was a teacher? I would handle it the same way if I heard things like this.

H.

Re: Day Programs

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

aughter.

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

[Guest guest]

Laurie,

 

Could you request that the staff has a communication notebook so that you could

communicate with them?  So often these issues are about communication, not

necessarily bad communication but no communication.  Our kids can't

communicate, the staff can't communicate, and t hey are left to fill in the

blanks themselves.  Generally they do not do a very good job filling in the

blanks and make assumptions that aren't correct.  I have never been very

successful getting staff to regularly communicate through a notebook, but on the

occassions that it does happen, amazing things happen.  The first thing is that

you connect.  The second is that you develop the ability to proactively solve

problems rather than react to everything.  The third thing is that your child's

behaviors become " understood " .  Clearly this is not happening.  had a

good day, had a bad day; what happened each day to make things go north or

south?  With better communication

maybe you could connect with the staff and make them understand what to do to

make every day a good day.  Just my 2 cents.

From: cmfinato <cmfinato@...>

Subject: Re: Day Programs

IPADDUnite

Date: Tuesday, March 29, 2011, 3:01 PM

 

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]

Thanks. I love communication notebooks. Here's why I can't imagine one would

work in a day program: At any given time, there are about 35-40 adult clients

in the room, and anywhere from 1-3 staff on the floor. Usually one is doing

paperwork. Usually 1 is attending to whatever individual client is having an

individual/personal care need (I.e. bathroom, feeding, etc). The other is

trying his or her best to manage whatever activity is being run at that moment.

Do you see how hard it would be for anyone to be noticing what might be causing

's distress? By the time they can pay attention, she's already run through

her repertoire of appropriate communication, and when those don't work, she

resorts to screaming or loud scripting. Then it's harder to get her 'back' from

that situation. Better to not let it get to that point in the first place. But

then that would take more structure, more staff, or less clients, or better

training...and we go round and round and round again.

I guess I already kind of know what the problem is...or at least I think I know.

How or whether it can be resolved is the issue. Thanks anyway.

From: Margie Sillery

Sent: Tuesday, March 29, 2011 4:07 PM

IPADDUnite

Subject: Re: Re: Day Programs

Laurie,

Could you request that the staff has a communication notebook so that you could

communicate with them? So often these issues are about communication, not

necessarily bad communication but no communication. Our kids can't communicate,

the staff can't communicate, and t hey are left to fill in the blanks

themselves. Generally they do not do a very good job filling in the blanks and

make assumptions that aren't correct. I have never been very successful getting

staff to regularly communicate through a notebook, but on the occassions that it

does happen, amazing things happen. The first thing is that you connect. The

second is that you develop the ability to proactively solve problems rather than

react to everything. The third thing is that your child's behaviors become

" understood " . Clearly this is not happening. had a good day, had a

bad day; what happened each day to make things go north or south? With better

communication

maybe you could connect with the staff and make them understand what to do to

make every day a good day. Just my 2 cents.

From: cmfinato <cmfinato@...>

Subject: Re: Day Programs

IPADDUnite

Date: Tuesday, March 29, 2011, 3:01 PM

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]

That's good to know, Bob. Thanks for the info.

From: farleylaw@...

Sent: Wednesday, March 30, 2011 1:34 PM

IPADDUnite

Subject: Re: Day Programs

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]

Yesterday I went to visit another day program, a little farther west of us, one

that started an 'autism day program' recently. I was impressed. It was 8

clients in a space probably about the size of 2 classrooms (the whole facility

is a series of old school buildings). All of them had autism. The visuals and

the structure of the space were amazing. Every client had an individual

schedule book. There was an 'overlay' of activities for the group, with choices

built into each activity for each person to make. There was a 'Q' assigned to

just this program, as I understood it, and you could tell she was really

knowledgeable about autism. There were 2 full-time staff assigned to the room,

too. So it was manageable. Communication was being reinforced in a variety of

ways (PECS, devices, computer, sign language). There's an indoor pool onsite

where clients have the opportunity, once a week, to swim if they choose. They

also had a beautifully set up sensory space where, depending on the person's

needs, they can access as often as needed (I loved that the Q said they

determine when each person uses the space based on preventing meltdowns or

behaviors as opposed to using it as calmdown strategy, harder to get them back

once they've melted down...gee how smart, huh?)

Negatives? Well, it's farther away from our house & no transportation, so I'd

be driving back and forth again for about 2 hours total time each day. And no

social engagement in a room full of autistic people (sorry but true) except with

the staff. Of course, she's not getting much social interaction now either,

unless you count people telling her to be quiet. Also, they started this

program on grants, and how or whether they can sustain this level of staffing

etc with impending budget cuts is uncertain. The rest of their facility has 175

individuals in several large workroom areas, more of an assembly line feel.

When I asked about staffing in that section, where there were maybe 75

individuals, I was told 3 staff.

But I have to say, overall, the place was impressive. Probably more like what

Ellen is used to up in the progressive North Shore.

I always thought we'd completely forego the day program route, because of

exactly these types of issues. The trick is when you reach the end of

transition, and are already planning 4 out of the 7 days of the week for your

adult child, it IS nice to have the other days to yourself, just drop off and

go, let someone else plan the day. When I felt the experience was at least a

'neutral' (she didn't LOVE it but on the other hand she didn't mind it much

either) I thought that was ok. How many of us LOVE to go to work everyday,

after all? But at this point it's turning into more of a negative, thus the

need to rethink.

L.

From: ELLEN BRONFELD

Sent: Wednesday, March 30, 2011 2:49 PM

IPADDUnite

Subject: Re: Day Programs

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]

Where is this one located?

Re: Day Programs

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]

It's in Aurora, with Association for Individual Development (A.I.D.).

From: marjanca@...

Sent: Wednesday, March 30, 2011 3:58 PM

IPADDUnite

Subject: Re: Re: Day Programs

Where is this one located?

Re: Day Programs

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]

Will keep you guys posted, for sure. Thanks.

From: Liz

Sent: Friday, April 01, 2011 7:38 AM

IPADDUnite

Subject: Re: Day Programs

>

> 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