Welcome all new members! :)

[Guest guest]

We've had about 30 new people sign on recently, which is great, and

we'd like to welcome all of you to IPADD. We're so glad you found us!

PLEASE take the time to introduce yourself to the group and tell us

what you're hoping to learn more about or any pressing issues you are

facing. Also, especially for those of you who've indicated you're

looking for more social opportunities for your adult children, click

on the Database section of our homepage and add your information to

our IPADD Directory. There might be others nearby who you could

connect with!

Thanks and look forward to getting to know all of you better.

The Moderators

Laurie, Ellen and Marie

IPADDUnite/

[Guest guest]

Thanks for the welcome. I would like to get some input about a

pressing issue for me and my family. My daughter is living in

Nebraska in a group home. I moved here to be near my son and

his wife and to accept a position working with children with

autism. I had to leave my daughter in Nebraska since I knew

better than to just move her to a new state without obtaining

services for her first. It is a long process just to get paperwork

done through PACT. I am less than impressed by them! Anyway

we are starting to look at specific placements and hope for

funding. If anyone has any words of wisdom or experience that

would help in this process, please pass them along. Thanks for

giving me the opportunity to vent.

Kathy

[Guest guest]

Welcome, Kathy.

What has PACT told you about the time frame for funding?

Ellen

Ellen Garber Bronfeldegskb@...

Re: Welcome all new members!

Thanks for the welcome. I would like to get some input about a pressing issue for me and my family. My daughter is living in Nebraska in a group home. I moved here to be near my son and his wife and to accept a position working with children with autism. I had to leave my daughter in Nebraska since I knew better than to just move her to a new state without obtaining services for her first. It is a long process just to get paperwork done through PACT. I am less than impressed by them! Anyway we are starting to look at specific placements and hope for funding. If anyone has any words of wisdom or experience that would help in this process, please pass them along. Thanks for giving me the opportunity to vent.Kathy

[Guest guest]

Hello I am a fairly new member and have been reading the postings for about a month now and feel supported in knowing that I am not alone.I have a son, 22 years of age with Aspergers. We returned to the Chicago area in June 2005. I began the process with PACT to obtain services and funding. Kathy, based on my experience, PACT does not really coordinate anything asdefined on the PACT website. You will make numerous phone calls to obtain information and make appointments, fill out form after form and conduct all your own research about agencies that offer services.PACT will provide a list of agencies but the list is not comprehensive and does not include what the agency offers. PACT will only file the paper work to receive the funding. Please note: If you complete the form provided by PACT to be sent to Department of Human Services for Medicaid coverage - ensure that you include that you want the state to pay for the Medical premium for Medicare. I either missed a check box or the form did not include a place to request this funding. You can only be very patient with PACT and be very direct on your requests.I hope that helps! Tami On 11/28/06,

kvazzano <katyvazz@...> wrote:

Thanks for the welcome. I would like to get some input about a

pressing issue for me and my family. My daughter is living in

Nebraska in a group home. I moved here to be near my son and

his wife and to accept a position working with children with

autism. I had to leave my daughter in Nebraska since I knew

better than to just move her to a new state without obtaining

services for her first. It is a long process just to get paperwork

done through PACT. I am less than impressed by them! Anyway

we are starting to look at specific placements and hope for

funding. If anyone has any words of wisdom or experience that

would help in this process, please pass them along. Thanks for

giving me the opportunity to vent.

Kathy

-- Tami Andress 427 Hudson AveClarendon Hills, IL 60514 630.850.7908

[Guest guest]

Hi Tami,

I am wondering where you are now located in the Chicago area and where you came from--and what services your son had there? Also, what is your son doing now? We are all our kids case managers--I made up my mind a long time ago that would be the "case" LOL! I just had a funny little thing with medicaid myself last week--and my case worker blamed me for her screw up--I just laughed and made sure my "T"s were crossed and my "I"s were dotted--she can just her act together and get over it.

Marie

In IPADDUnite , "Tami Andress" <tami.andress@...> wrote:>> Hello I am a fairly new member and have been reading the postings for about> a month now> and feel supported in knowing that I am not alone.> I have a son, 22 years of age with Aspergers.> > We returned to the Chicago area in June 2005. I began the process with> PACT to obtain services and funding.> > Kathy, based on my experience, PACT does not really coordinate anything as> defined on the PACT website.> > You will make numerous phone calls to obtain information and make> appointments,> fill out form after form and conduct all your own research about agencies> that offer services.> PACT will provide a list of agencies but the list is not comprehensive and> does not include> what the agency offers.> > PACT will only file the paper work to receive the funding.> > Please note: If you complete the form provided by PACT to be sent to> Department of Human Services> for Medicaid coverage - ensure that you include that you want the state to> pay for the Medical premium for Medicare. I either missed a check box or> the form did not include a place to request this funding.> > You can only be very patient with PACT and be very direct on your requests.> > I hope that helps!> Tami> > > > > > > > On 11/28/06, kvazzano katyvazz@... wrote:> >> > Thanks for the welcome. I would like to get some input about a> > pressing issue for me and my family. My daughter is living in> > Nebraska in a group home. I moved here to be near my son and> > his wife and to accept a position working with children with> > autism. I had to leave my daughter in Nebraska since I knew> > better than to just move her to a new state without obtaining> > services for her first. It is a long process just to get paperwork> > done through PACT. I am less than impressed by them! Anyway> > we are starting to look at specific placements and hope for> > funding. If anyone has any words of wisdom or experience that> > would help in this process, please pass them along. Thanks for> > giving me the opportunity to vent.> > Kathy> >> > > >> > > > -- > Tami Andress> 427 Hudson Ave> Clarendon Hills, IL 60514> 630.850.7908>

[Guest guest]

Marie, We live in Clarendon Hills at this time. My son, is currently working at Home Depot in Darien through a Job Placement and Couching program offered through Spectrum. Spectrum,is located in Downers Grove and associated with Little Friends in Naperville. It took about a year to get him in this program. is doing very well on the Job at Home Depot - this has been a verypositive success for him after some very bad experiences.

We were previously in Minnesota, he qualified for services however, his case worker with the Department of Human Services did not understand Aspergers at all, this became very apparent when I read her report upon leaving Minnesota. He did work at a Sheltered workshopin Minnesota for 8 - 12 weeks where he always felt insulted by the staff. was in Minnesota for about a year with his Grandmother, my mother, whileI remained in Texas. Texas offered to teach him how to fold boxes and Minnesota

offered more services so he went to Minnesota. This was a huge mistake on my part. My Mother and Sister were trying to get in the the Job Corp programwhich would have been the worse place for him.

They both take the approach of blaming him for how he is and take the " tough love " approach, neither one can or are willing to understand Aspergers. I have no family support - I have other siblings that don't believe that there is anything wrong and that I have just made all of this up. does qualify for housing, group home, but he is a long way offer from doingthis. He has no desire to be away from home. In addition, his independent living

skills are not quite at an appropriate level for him to succeed at this. We all know we have to be our child's advocate to get the services that they needand are entitled to. However, the agencies make this very difficult and are not understanding of our situations and needs. In addition, I believe that there needs to be day programs available that would provide living skills, social skills training in addition to providing an environment where out kids feel that they are not alone on the Spectrum. I am sorry this is so long - I guess once I get started I cannot stop. Tami On 11/29/06, Marie Grass Amenta <teteme@...> wrote:

Hi Tami,

I am wondering where you are now located in the Chicago area and where you came from--and what services your son had there? Also, what is your son doing now? We are all our kids case managers--I made up my mind a long time ago that would be the " case " LOL! I just had a funny little thing with medicaid myself last week--and my case worker blamed me for her screw up--I just laughed and made sure my " T " s were crossed and my " I " s were dotted--she can just her act together and get over it.

Marie

In IPADDUnite , " Tami Andress " <tami.andress

@...> wrote:>> Hello I am a fairly new member and have been reading the postings for about> a month now> and feel supported in knowing that I am not alone.> I have a son, 22 years of age with Aspergers.

> > We returned to the Chicago area in June 2005. I began the process with> PACT to obtain services and funding.> > Kathy, based on my experience, PACT does not really coordinate anything as

> defined on the PACT website.> > You will make numerous phone calls to obtain information and make> appointments,> fill out form after form and conduct all your own research about agencies

> that offer services.> PACT will provide a list of agencies but the list is not comprehensive and> does not include> what the agency offers.> > PACT will only file the paper work to receive the funding.

> > Please note: If you complete the form provided by PACT to be sent to> Department of Human Services> for Medicaid coverage - ensure that you include that you want the state to> pay for the Medical premium for Medicare. I either missed a check box or

> the form did not include a place to request this funding.> > You can only be very patient with PACT and be very direct on your requests.> > I hope that helps!> Tami>

> > > > > > > On 11/28/06, kvazzano katyvazz@... wrote:> >> > Thanks for the welcome. I would like to get some input about a

> > pressing issue for me and my family. My daughter is living in> > Nebraska in a group home. I moved here to be near my son and> > his wife and to accept a position working with children with

> > autism. I had to leave my daughter in Nebraska since I knew> > better than to just move her to a new state without obtaining> > services for her first. It is a long process just to get paperwork

> > done through PACT. I am less than impressed by them! Anyway> > we are starting to look at specific placements and hope for> > funding. If anyone has any words of wisdom or experience that

> > would help in this process, please pass them along. Thanks for> > giving me the opportunity to vent.> > Kathy> >> > > >> > >

> -- > Tami Andress> 427 Hudson Ave> Clarendon Hills, IL 60514> 630.850.7908>

-- Tami Andress 427 Hudson AveClarendon Hills, IL 60514 630.850.7908

[Guest guest]

How interesting to hear that a state such as Minnesota, which is supposed to be doing a pretty good job, failed your son, while here in Illinois, you are having more positive experiences for your son. Regardless of funding and availability of good supports and services, the people with whom we and our children must interface can make or break the deal...

It is good to hear that is working and doing well.

Ellen

Ellen Garber Bronfeldegskb@...

Re: Re: Welcome all new members!

Marie, We live in Clarendon Hills at this time. My son, is currently working at Home Depot in Darien through a Job Placement and Couching program offered through Spectrum. Spectrum,is located in Downers Grove and associated with Little Friends in Naperville. It took about a year to get him in this program. is doing very well on the Job at Home Depot - this has been a verypositive success for him after some very bad experiences. We were previously in Minnesota, he qualified for services however, his case worker with the Department of Human Services did not understand Aspergers at all, this became very apparent when I read her report upon leaving Minnesota. He did work at a Sheltered workshopin Minnesota for 8 - 12 weeks where he always felt insulted by the staff. was in Minnesota for about a year with his Grandmother, my mother, whileI remained in Texas. Texas offered to teach him how to fold boxes and Minnesota offered more services so he went to Minnesota. This was a huge mistake on my part. My Mother and Sister were trying to get in the the Job Corp programwhich would have been the worse place for him. They both take the approach of blaming him for how he is and take the "tough love" approach, neither one can or are willing to understand Aspergers. I have no family support - I have other siblings that don't believe that there is anything wrong and that I have just made all of this up. does qualify for housing, group home, but he is a long way offer from doingthis. He has no desire to be away from home. In addition, his independent living skills are not quite at an appropriate level for him to succeed at this. We all know we have to be our child's advocate to get the services that they needand are entitled to. However, the agencies make this very difficult and are not understanding of our situations and needs. In addition, I believe that there needs to be day programs available that would provide living skills, social skills training in addition to providing an environment where out kids feel that they are not alone on the Spectrum. I am sorry this is so long - I guess once I get started I cannot stop. Tami

On 11/29/06, Marie Grass Amenta <tetemeameritech (DOT) net> wrote:

Hi Tami,

I am wondering where you are now located in the Chicago area and where you came from--and what services your son had there? Also, what is your son doing now? We are all our kids case managers--I made up my mind a long time ago that would be the "case" LOL! I just had a funny little thing with medicaid myself last week--and my case worker blamed me for her screw up--I just laughed and made sure my "T"s were crossed and my "I"s were dotted--she can just her act together and get over it.

Marie

In IPADDUnite , "Tami Andress" <tami.andress @...> wrote:>> Hello I am a fairly new member and have been reading the postings for about> a month now> and feel supported in knowing that I am not alone.> I have a son, 22 years of age with Aspergers. > > We returned to the Chicago area in June 2005. I began the process with> PACT to obtain services and funding.> > Kathy, based on my experience, PACT does not really coordinate anything as > defined on the PACT website.> > You will make numerous phone calls to obtain information and make> appointments,> fill out form after form and conduct all your own research about agencies > that offer services.> PACT will provide a list of agencies but the list is not comprehensive and> does not include> what the agency offers.> > PACT will only file the paper work to receive the funding. > > Please note: If you complete the form provided by PACT to be sent to> Department of Human Services> for Medicaid coverage - ensure that you include that you want the state to> pay for the Medical premium for Medicare. I either missed a check box or > the form did not include a place to request this funding.> > You can only be very patient with PACT and be very direct on your requests.> > I hope that helps!> Tami> > > > > > > > On 11/28/06, kvazzano katyvazz@... wrote:> >> > Thanks for the welcome. I would like to get some input about a> > pressing issue for me and my family. My daughter is living in> > Nebraska in a group home. I moved here to be near my son and> > his wife and to accept a position working with children with> > autism. I had to leave my daughter in Nebraska since I knew> > better than to just move her to a new state without obtaining> > services for her first. It is a long process just to get paperwork > > done through PACT. I am less than impressed by them! Anyway> > we are starting to look at specific placements and hope for> > funding. If anyone has any words of wisdom or experience that > > would help in this process, please pass them along. Thanks for> > giving me the opportunity to vent.> > Kathy> >> > > >> > > > -- > Tami Andress> 427 Hudson Ave> Clarendon Hills, IL 60514> 630.850.7908>

-- Tami Andress 427 Hudson AveClarendon Hills, IL 60514 630.850.7908

[Guest guest]

Thank you for the good explanation and the geography you and your son

covered. we here in Illinois wring our hands over the fact that we are

ranked so low in support for people with disabilities and covet the great

things other states are doing. The reality is wherever we go we have to be

on top of things, knowing more than the experts, , building relationships

with everyone from the senator to the line workers , and do this with a

smile on our faces. The people with disabilities who have true quality

of life, in the community, have had a mom or dad who has full time worked

the LIFE, been the captain of the team, and really did not wait for the

system to hand out the crumbs. I do Info and referral for the Il. Lifespan,

and my part is follow up. So I get to hear the reality of the offerings

versus the print on the brochures. Thanks for your hard work on behalf of

your son, thanks for letting the group know just what it takes.

Cindi

[Guest guest]

I had the same surprise about MN. Maybe at a state level things are going

reasonably well

- but - as Ellen said " the people with whom we and our children must interface

can make

or break the deal. " That's so very true and is recognized by us parents and

seemingly

ignored by agencies and funding sources. A super aide sure is worth multiple

times the

$9-$11 s/he's probably getting.

Ron

> > >

> > > Thanks for the welcome. I would like to get some input about a

> > > pressing issue for me and my family. My daughter is living in

> > > Nebraska in a group home. I moved here to be near my son and

> > > his wife and to accept a position working with children with

> > > autism. I had to leave my daughter in Nebraska since I knew

> > > better than to just move her to a new state without obtaining

> > > services for her first. It is a long process just to get paperwork

> > > done through PACT. I am less than impressed by them! Anyway

> > > we are starting to look at specific placements and hope for

> > > funding. If anyone has any words of wisdom or experience that

> > > would help in this process, please pass them along. Thanks for

> > > giving me the opportunity to vent.

> > > Kathy

> > >

> > >

> > >

> >

> >

> >

> > --

> > Tami Andress

> > 427 Hudson Ave

> > Clarendon Hills, IL 60514

> > 630.850.7908

> >

>

>

>

>

>

>

> --

> Tami Andress

> 427 Hudson Ave

> Clarendon Hills, IL 60514

> 630.850.7908

>

[Guest guest]

I think Minnesota's claim to fame is the reduction (to zero, I believe) of their large institutions. We see these statistics and make assumptions about other supports and services.

Ellen

Ellen Garber Bronfeldegskb@...

Re: Welcome all new members!

I had the same surprise about MN. Maybe at a state level things are going reasonably well - but - as Ellen said "the people with whom we and our children must interface can make or break the deal." That's so very true and is recognized by us parents and seemingly ignored by agencies and funding sources. A super aide sure is worth multiple times the $9-$11 s/he's probably getting.Ron > > >> > > Thanks for the welcome. I would like to get some input about a> > > pressing issue for me and my family. My daughter is living in> > > Nebraska in a group home. I moved here to be near my son and> > > his wife and to accept a position working with children with> > > autism. I had to leave my daughter in Nebraska since I knew> > > better than to just move her to a new state without obtaining> > > services for her first. It is a long process just to get paperwork > > > done through PACT. I am less than impressed by them! Anyway> > > we are starting to look at specific placements and hope for> > > funding. If anyone has any words of wisdom or experience that > > > would help in this process, please pass them along. Thanks for> > > giving me the opportunity to vent.> > > Kathy> > >> > > > > >> > > > > > > > -- > > Tami Andress> > 427 Hudson Ave> > Clarendon Hills, IL 60514> > 630.850.7908> >> > > > > > > -- > Tami Andress > 427 Hudson Ave> Clarendon Hills, IL 60514 > 630.850.7908>

[Guest guest]

is absolutely right. There is much that can be achieved to ensure a quality life for our children but it takes a tremendous amount of time and energy to build relationships, to acquire the knowledge and skills necessary to make it happen, and to implement the plan. It all falls on us, but we can help one another in many ways.

So, please share your successes and your struggles.

Ellen

Ellen Garber Bronfeldegskb@...

Re: Re: Welcome all new members!

Thank you for the good explanation and the geography you and your son covered. we here in Illinois wring our hands over the fact that we are ranked so low in support for people with disabilities and covet the great things other states are doing. The reality is wherever we go we have to be on top of things, knowing more than the experts, , building relationships with everyone from the senator to the line workers , and do this with a smile on our faces. The people with disabilities who have true quality of life, in the community, have had a mom or dad who has full time worked the LIFE, been the captain of the team, and really did not wait for the system to hand out the crumbs. I do Info and referral for the Il. Lifespan, and my part is follow up. So I get to hear the reality of the offerings versus the print on the brochures. Thanks for your hard work on behalf of your son, thanks for letting the group know just what it takes.Cindi