Records into adulthood

[Guest guest]

In a message dated 6/14/2004 11:10:35 AM Eastern Daylight Time,

louandy@... writes:

> I am always amazed when I talk to some other families that they take

> what an agency says as the truth, don't question some things, or don't

> get copies of records.

>

Hi Louise,

I have learned to ask for anything and everything in writing. I think many

parents are overwhelmed at the time it takes to read and follow up. I won't ever

say that Zeb doesn't take most of my time but I feel the investment now will

be worth the effort in adulthood. I can use my paper trail for documentation

when problems arise. The school staff can never say it wasn't like this because

I have it in writing. I just returned from a meeting with a very p--- off

sped teacher. I happened to have guidelines that I had drafted myself and had

placed on an IEP three years ago. The school naturally didn't have that paper in

their records. It proved that Zeb was allowed to be independant at that time

and was very successful. It proved my point. I didn't have to say much to make

my point. You never know when the documentation will be to your advantage when

requesting changes in service delivery. My gripe isn't over until I see

results but I did not have to plead my case. The paperwork spoke for itself.

Charlyne

Mom to Zeb 11 DS/OCD/ASD?

[Guest guest]

Irma and Charlyne I feel good listening to you talking about school

records as you are preparing yourselves so well for the future. When

first went into residence ('92 at age 30) I never asked for copies

of monthly records. Then in '98 when the psychologist was given

incorrect information I decided the only way I would know what was going

on was to ask for copies. Each agency has different forms for recording

so whenever the time comes you will have to familiarize yourselves with

what forms an agency uses. They are required to only give you a copy of

the ISP (Individual Service Plan) IPP (Individual Program Plan) or

whatever that agency or state calls it. (This includes any Behavior

Plan).

From the Monthly Goal Sheet I am able to tell how he is accomplishing

his goals -- even then sometimes I question as it is marked accomplished

and I have known through other ways a goal could not have been

completed. The case manager said that when a goal has been met at 100%

for three months they are suppose to change or revise it, even that

doesn't happen. Another form they have is a Monthly Activity Sheet

where they mark on one line, on a day to day basis what he does, that is

helpful to know what he is doing. We then get a report from work and

the Behavior Frequency Chart which targets certain behaviors -- on a

monthly basis they put a mark is one of the targeted behaviors happen.

We also get copies of all Incident Reports. So with all of these I am

able to keep track of information. When I get the Incident Reports I

chart them on a Scatter Plot for Problem Analysis. This form I got from

my cyber friend Al Pfadt, PhD in NY on the Psych-DD list. The form

helps me to look at the overall picture during the year if the incidents

are happening more at certain times like lunch or break times, on

certain days and times etc. If you ever want this form I can send it as

an attachment off list.

The problem I have with the agency where resides and works is they

don't seem to take all this information into consideration to see what

is happening and what they could do to correct it. Barbara Doyle in her

evaluation looked at these records and could see clearly things that

were happening and recommended things that could be done. That's

another story as we are still waiting for things to fall into place

after her evaluation.

Over the years there have been times when I have asked for copies of

other records like financial to see if his money is being spent well.

Since I am also on his bank account I access it online. The bank now

has the deposit slips online so I can keep track if his work checks are

deposited plus his $50/month he gets back from agency from his social

security per the CILA (Community Integrated Living Arrangement) rate

determination regs. Also he gets $77/month in food stamps here it is

call a Link Card and I can check that account to see if it is being

used. Last year they lost $129.00 because it wasn't used for three

months because the new home manager didn't know he had it. In addition

gets $35/week for groceries and this agency uses a grocery store

gift card to purchase groceries.

One agency where a friend works has a Comprehensive Summary for the

Month which they complete and send to parents/guardians. This I think

is a good way to do it also, especially as I get older.

I am always amazed when I talk to some other families that they take

what an agency says as the truth, don't question some things, or don't

get copies of records.

Keep up your never ending questioning. Louise, Mom to 41 DS/HI/ASD

[Guest guest]

Charlyne you are so right about documentation. Part of nurses training

in documentation is, " If it isn't written, it didn't happen. " If I get

a call about a specific incident I write it up to then compare with the

Incident Report when I get it. If I happen to talk to staff about an

incident I add that to my notes. You are so right that you never know

when you might need the info. Sometimes I too get overwhelmed with all

the paper work but then step back and soon I am ready again to tackle

the next challenge. Interesting about the guidelines of three years ago

not being in the IEP records, good for you having them ready to make

your point. Know you will keep up your great work. Louise