Re: Members Witholding Answers from the Group

Posted March 13, 2011 · March 13, 2011

Hi Diane:

I am not sure what members you are referring to, who withhold information on

IPADDU. I think our experts, who, by the way, earn their living by providing

this same information, have been wonderful and very generous in their responses

to member's questions.

Keep in mind that membership to IPADDU does not obligate one to share

information, though it is certainly something we strongly encourage. While many

of our members have gone through some of the processes that come up on IPADDU, I

would think that some are reticent to share information because they are not

experts and, to be honest, once you have completed one of the major tasks, such

as obtaining SSI or Medicaid, one is on to the next task at hand and much of the

process just fades into a not so great memory!

Laurie and I have briefly discussed the fact that much of the information

provided on IPADDU, is both critical and repetitive AND much of the information

is not easy to explain or digest.

If Laurie has the time, she will cull through the archives and try to put

together some information pieces on the most commonly asked questions, which is

mostly about SSI, Medicaid, guardianship and those types of issues. Our various

experts have provided some information sheets and guides that our in the IPADDU

files.

We all do our best to respond and assist, and all without financial benefit,

but even our experts have their limit to how much they can share without

crossing the line of their " bottom line. " We need to respect that.

You sound really frustrated...I am sorry you are feeling that way.

Ellen

Ellen Garber Bronfeld

egskb@...

Posted March 13, 2011 · March 13, 2011

Diane, I have to say that I have found many on this board that has shared their

knowledge and experiences freely many of timesÂ with me and many others.Â If

they did not know the answers they gave me names and numbers to call.Â Every

person's situation is different and nobody has all the answers.Â I am very

curious to what information you think is being withheld.Â Many on this board

not only have a disabled loved one but also a full time job, other children,

other meetings, they go to Springfield, DC and everywhere in between and are

fighting every day for all of us.Â I would like to once again thank all of

these people for all of their hard work and answers they have helped me with.Â

I have learned more from these people in a year then I have in the other 29

years that I have been fighting for answers for my son.Â Thank you.

Shirley

From: swedegrl2005 <swedegrl@...>

Subject: Members Witholding Answers from the Group

IPADDUnite

Date: Sunday, March 13, 2011, 12:09 AM

Â

I know I have had some conversations with actually several other members, who

share my feelings that there some members here who have the answers to some of

our questions and just care not to share. We all thought, support and

information sharing was the purpose of this group and without predjudice. Just

wondering why anyone would do that to other parents.

I always share everything I know, and I never expect anything in return. in fact

I will be on the parent panel in Naperville next Thursday, and I'm happy to do

it. I expect nothing in return.

Diane S.

Posted March 13, 2011 · March 13, 2011

Sherri Schneider has graciously offered to take calls from members who have

questions.

Feel free to call her at her business office, Family Benefit Solutions,

847-279-8506, during regular business hours.

I have retained Sherri's professional services for some of our benefits planning

which is why I don't know all of the answers....I didn't need to know. My

husband did the other work...so I apologize for not always being able to answer

questions directly.

I think it is even more important that members do NOT answer technical questions

if they are not experts in the field being queried or if, at the very least,

they are not 100% sure of the answer.

Ellen

Ellen Garber Bronfeld

egskb@...

Posted March 14, 2011 · March 14, 2011

Hello Ellen,

I just wanted to take a moment to sincerely thank you, your entire team, an

d the experts that volunteer their time for all of their extensive efforts

to help so many. I have often forwarded information to our entire PASSAGE

group, or just an individual family that may need specific information.

The maze of disability services is so very complex, and in many instances

the answer to questions seems to be individual/family specific. In

addition, the site shares so many important resources, unique ideas, and even

job

opportunities. One of our young adults even found employment from a listing

posted on IPADD. You guys are really making a positive impact on so many

families. Congratulations on a job superbly done!!

Take care,

Teri Dudasik

PASSAGE

_www.passagegroup.org_ (http://www.passagegroup.org/)

Posted March 14, 2011 · March 14, 2011

Ellen: I personally am grateful you and Laurie provide this forum and have

referred MANY parents to it who have received numerous benefits as well as

myself. My recent inquiries for SSI and Tax clarification were more for parents

who ask me those questions but cannot find the exact answers and have actually

secured the services of the trusted professionals that do offer their time and

expertise pro bono. My husband and I ourselves have hired several professionals

on the IPADD team to take care of our individual needs and trust them and are

grateful for their follow up in this venue. It's taken me all of my daughter's

almost 22 years of existence to persevere for accurate and up to date

information in a complex system that is a maze of one confusing topic over

another and to make it harder is the uniqueness of each of our children. Keep

up the good work. A reminder to those seeking information...rather than doing a

quick post, search through the topics and you may find your answer there first.

I found many interesting topics that I have cut and paste into word docs and

then file for future reference. Propheter

>

> I know I have had some conversations with actually several other members, who

share my feelings that there some members here who have the answers to some of

our questions and just care not to share. We all thought, support and

information sharing was the purpose of this group and without predjudice. Just

wondering why anyone would do that to other parents.

>

> I always share everything I know, and I never expect anything in return. in

fact I will be on the parent panel in Naperville next Thursday, and I'm happy to

do it. I expect nothing in return.

>

> Diane S.

>

Posted March 14, 2011 · March 14, 2011

i've been biting my tongue to not respond to " withholding answers from the

group " since the first posting, which i did not quite underderstand in the first

place.Â this group has helped me cut through the red tape of the social

security

system, medicaid, medicare, food assistance, and in addition brought to my

attention other issues i had not even crossed my mind.Â and all in 6 months.Â

i

do not think it a valuable use of any of your time, to respond to a comment that

does not have a specific example.Â it is hard enough on all of us to be feeling

defensive when we feel that way on a day to day basis given the situation(s) we

all live in day to day.

perhaps " witholding answers from the group " is frustrated, tired and hopeless.Â

to that i say .... put your anger and frustration aside and come join us ......

________________________________

From: Get Real <marcp2@...>

IPADDUnite

Sent: Mon, March 14, 2011 8:18:43 AM

Subject: Re: Members Witholding Answers from the Group