Re: Day Programs, Funding, and Random Thoughts

[Guest guest]

Charlotte,

1. First of all, sorry to hear about your surgery. It's just like one of us,

though, to be back at our laptops the day after surgery.

2. Thanks for clarification on the ARC's outcomes list. That info makes it a

little more palatable.

3. Re: 's day program issues, thank you again for your comments. The

reason I was researching SSTs/CART was for that very reason. At this point I'm

not sure she'd meet the criteria, although maybe so. I'll discuss it with her

staff. She does have the HCBS Waiver, and it's been suggested to me by more

than one person on this fine list that we engage a behavioral analyst to go in

and help problemsolve. That might be a good option.

4. Re: using the HBCS supports to do other, creative things with her day.

That's been the plan all along. As you might recall, we started a small

home-based business called Helper Girl, which employs (and me, at no wage)

to do fun things like planting in big outdoor containers, shredding for small

business people, and creating wreaths, button crafts, and other things that we

sell to help earn her Social Security work credits. Every Tuesday and

Thursday, she uses her HCBS monies to pay a PSW $15/hour, for 4-5 hours; and

they go mall-walking at an indoor mall where a lot of the people know her & say

'hi' - she's part of the 'club' - then she volunteers at our local Police

Station in their Records Division, happily shredding away old traffic violations

and such; then they go buy lunch at a restaurant of her choosing; then run

errands for Helper Girl or just go for a car ride before coming home.

On the weekends I do Helper Girl business with her and it's been very rewarding.

We purposely chose activities that were also hobbies of mine (ok, well, not the

shredding part, that's her deal completely) so I enjoy doing them, too.

I other 3 days of the week -- I wanted to myself, for sanity sake and also just

because I'm kind of selfish with my time. So that's where the day program

part came in. No one ever calls in sick, they're not on a school calendar with

all the days off, it's reliable. Drop off and go for 5-6 hours. At least

that's what I hoped.

I'm beginning to wish that instead of having all the funding for community

services come from the state/feds, that part of our property taxes also

supported them -- like with the public schools! That would help where I live,

of course wouldn't help many areas at all. Yes, I'm grasping at straws here!

But really do appreciate the thoughts, Charlotte, and hope for your speedy

recovery. Take all the pharmaceuticals they offer, my dear, they're a good

thing at a time like this!

Laurie

From: Charlotte Cronin

Sent: Wednesday, March 30, 2011 10:23 PM

IPADDUnite

Subject: Day Programs, Funding, and Random Thoughts

Folks, I've been following this conversation with interest and really

appreciate Bob's response. I couldn't jump in sooner as I had my gall

bladder out yesterday . how's that for a good excuse. !

If you've ever heard anyone at DHS/DD describe how they came up with the DT

rate decades ago, it would make you shudder. It's so ridiculous that I can

even hold it in my memory.

I want to share a couple of thoughts..

1. Laurie, I can't remember if your daughter is receiving DT only or

if you're paying for it through the Home-Based Support Services (HBSS)

program. If she is in HBSS, then you can use some of her funding to get a

good functional behavioral analysis and pay someone to help implement it.

However, it may be very appropriate to ask you PAS agency to submit your

daughter's name for attention from a Support Service Team (SST). another

conversation I was ignoring this week, sorry. Here's some information I

found on the DHS website about SST's:

http://www.dhs.state.il.us/page.aspx?item=50861. And this service is

available whether she is in DT or HBSS. In fact, I don't a person even needs

to be currently enrolled in services at all to access them. But, I could be

wrong.

Having said all that, one of the things I love about HBSS is the opportunity

you have to create her own week of activities INSTEAD of DT. At our

" Dreaming New Dreams " seminars, I talk a lot about weaving together a week

of activities based on that person's skills, desires, dreams, challenges.

etc, etc. Then hiring personal support workers to help implement that. That

can include work, volunteer, skill building, or just plain fun activities. I

really think that a lot (certainly not all) of my son's behavioral

challenges were just plain flat based on boredom. One of the cool things

about this strategy is that you can also use your funding to pay for

transportation. This strategy does have a couple of down sides. I think it

can take a lot more work on the part of the family. It can also mess with

YOUR work schedule if the personal support worker is sick or has other

issues.

2. The second issue I want to touch on are the one or two responses I

read to Tony's e-mail Monday about " Outcomes for DD Services " . I didn't save

the e-mail but remember the angst about the waiting list vs. " incentizing " a

variety of services.

I just hate it, hate it, hate it, hate it. NOT the conversation. It is a

good thoughtful conversation. But the fact that it is even necessary is just

so wrong. On one end we have services that are so desperately underfunded

that we have the situation that Laurie has been describing this week. On the

other end we have 21,000 people in need of services. And I'll tell you I get

many of those phone calls here in my office. They just tear at my heart.

Be sure to understand that those strategies were offered in response to a

SPECIFIC request of the Governor's office.. how to avoid reducing EXISTING

services. Plus I've been to enough meetings over the last decade and a half

to know that we have structural challenges within our system that

" dis-incentivize " the kind of flexible, effective services we all need.

You'll see many of those addressed in the Blueprint for System Redesign.

I could ramble on at length here. But, I think you get my gist. I respect

you all so much and this is so hard.

Charlotte

From: IPADDUnite [mailto:IPADDUnite ] On

Behalf Of Jerue Family

Sent: Wednesday, March 30, 2011 2:27 PM

IPADDUnite

Subject: Re: Re: Day Programs

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

From: farleylaw@... <mailto:farleylaw%40aol.com>

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

IPADDUnite <mailto:IPADDUnite%40>

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@... <mailto:farleylaw%40aol.com>

www.farley1.com