question about PA for adult with DD

[Guest guest]

Hi there,

We learned recently that our adult daughter with DD has qualified for the Home

Services program through DHS/DRS. We're in the process of completing the

Personal Assistant packet and plan to employ someone we know and trust to help

take some of the load off.

Based on the paperwork, it looks like we have the option of setting up a family

member as an additional PA as long the PA is an adult (which she is) and the

customer receiving the PA services is an adult.

Am I reading this right? Can an adult in the home (in this case it would be a

parent) be set up as the PA for their adult child with DD? Does anyone on the

list know of someone who has used the option? If so I'm interested in learning

about how this is working.

One last question, I'm hoping someone can help to answer. In order to open the

case, the case worker accepted the healthcare POA we have for our daughter but

said this document will work only temporarily. She said that we will need to

obtain a court POA. We asked for clarification on what she meant, but we're

still unclear on what she needs. For those on the list more familiar with this

process, we're wondering if maybe what she meant is that we now need to apply

for legal guardianship. Up to this point, we haven't needed it but we're willing

to go this route if we need to.

Any thoughts or insights any of you can provide on this or any of our other

questions would be much appreciated, as we don't want to do this wrong.

Kim

[Guest guest]

Hi Kim,

We had several years of experience with DRS Home Services Personal Assistant

services, and it worked great for us. What’s the hourly rate now for PAs? Is

it in the $11.00/hour range?

Glad to hear that you have someone you know and trust, because the only negative

I’d have to share about the program were the PAs sent by two agencies I at

first contacted, before realizing most of them were CNAs and were not accustomed

nor familiar with developmental disabilities/autism. Then we went to Plan B,

which was to sign me up to be our daughter’s PA (since I handle most of those

personal, intimate situations like showering, dressing, etc anyway). It worked

out well, my husband became the Representative Payee (we have guardianship) so

he signed off on the timesheets & we were good to go. It was a huge help to our

family.

Not sure what POA stands for in your post, but I’m sure others will know.

Hope that helps!

Mind if I ask what county you’re from and how long did the process take from

time you made the first phone call/referral to you getting the approval? I’ve

heard from many families that it’s taking many months now, which must mean

that more are applying. When we did it, there was about a 30-day wait for the

appt; daughter was approved on the spot in our home; and services/funding became

available the next day. I’m still amazed by that!

Laurie

From: kim

Sent: Tuesday, December 06, 2011 5:35 PM

IPADDUnite

Subject: question about PA for adult with DD

Hi there,

We learned recently that our adult daughter with DD has qualified for the Home

Services program through DHS/DRS. We're in the process of completing the

Personal Assistant packet and plan to employ someone we know and trust to help

take some of the load off.

Based on the paperwork, it looks like we have the option of setting up a family

member as an additional PA as long the PA is an adult (which she is) and the

customer receiving the PA services is an adult.

Am I reading this right? Can an adult in the home (in this case it would be a

parent) be set up as the PA for their adult child with DD? Does anyone on the

list know of someone who has used the option? If so I'm interested in learning

about how this is working.

One last question, I'm hoping someone can help to answer. In order to open the

case, the case worker accepted the healthcare POA we have for our daughter but

said this document will work only temporarily. She said that we will need to

obtain a court POA. We asked for clarification on what she meant, but we're

still unclear on what she needs. For those on the list more familiar with this

process, we're wondering if maybe what she meant is that we now need to apply

for legal guardianship. Up to this point, we haven't needed it but we're willing

to go this route if we need to.

Any thoughts or insights any of you can provide on this or any of our other

questions would be much appreciated, as we don't want to do this wrong.

Kim

[Guest guest]

Kim,

I'm not sure about this, but on your last question, it could just mean

getting a " power-of-attorney for property " (ability to conduct personal

business transactions, handle money, etc) which is different from

" power-of-attorney for health care " (making decisions for health care issues.)

Ideally,

you should have both.

Debra

In a message dated 12/6/2011 6:56:29 P.M. Central Standard Time,

jeruefamily@... writes:

Hi Kim,

We had several years of experience with DRS Home Services Personal

Assistant services, and it worked great for us. What’s the hourly rate now

for

PAs? Is it in the $11.00/hour range?

Glad to hear that you have someone you know and trust, because the only

negative I’d have to share about the program were the PAs sent by two

agencies I at first contacted, before realizing most of them were CNAs and were

not accustomed nor familiar with developmental disabilities/autism. Then we

went to Plan B, which was to sign me up to be our daughter’s PA (since I

handle most of those personal, intimate situations like showering, dressing,

etc anyway). It worked out well, my husband became the Representative Payee

(we have guardianship) so he signed off on the timesheets & we were good to

go. It was a huge help to our family.

Not sure what POA stands for in your post, but I’m sure others will know.

Hope that helps!

Mind if I ask what county you’re from and how long did the process take

from time you made the first phone call/referral to you getting the approval?

I’ve heard from many families that it’s taking many months now, which

must mean that more are applying. When we did it, there was about a 30-day

wait for the appt; daughter was approved on the spot in our home; and

services/funding became available the next day. I’m still amazed by that!

Laurie

From: kim

Sent: Tuesday, December 06, 2011 5:35 PM

_IPADDUnite _ (mailto:IPADDUnite )

Subject: question about PA for adult with DD

Hi there,

We learned recently that our adult daughter with DD has qualified for the

Home Services program through DHS/DRS. We're in the process of completing

the Personal Assistant packet and plan to employ someone we know and trust

to help take some of the load off.

Based on the paperwork, it looks like we have the option of setting up a

family member as an additional PA as long the PA is an adult (which she is)

and the customer receiving the PA services is an adult.

Am I reading this right? Can an adult in the home (in this case it would

be a parent) be set up as the PA for their adult child with DD? Does anyone

on the list know of someone who has used the option? If so I'm interested

in learning about how this is working.

One last question, I'm hoping someone can help to answer. In order to open

the case, the case worker accepted the healthcare POA we have for our

daughter but said this document will work only temporarily. She said that we

will need to obtain a court POA. We asked for clarification on what she meant,

but we're still unclear on what she needs. For those on the list more

familiar with this process, we're wondering if maybe what she meant is that we

now need to apply for legal guardianship. Up to this point, we haven't

needed it but we're willing to go this route if we need to.

Any thoughts or insights any of you can provide on this or any of our

other questions would be much appreciated, as we don't want to do this wrong.

Kim

[Non-text portions of this message have been removed]

[Guest guest]

My son Evan was approved for Home Services money in 2009. I found out about

this funding avenue totally by accident at my son's exit IEP meeting from high

school. Because I told them that Evan would hate a workshop and that I had seen

several of his friends work with agencies for 6 months or more trying to find a

job in the community only to be told that they were unemployable, I knew not to

even try. It was then that Home Services was brought up.

We had the appointment within two weeks and the caseworker approved him on the

spot! I felt like I had died and gone to heaven! No - I need to bring this

back to my supervisor, no- I need to send this to Springfield. I started

receiving the money within the month! Amazing!

I am his PA with my husband signing the customer signature as his guardian. We

are both Evan's legal guardians. The pay since our raise in July is $11.55 per

hour. I also get enough hours to qualify for insurance coverage for myself and

that is FREE. So, now their insurance is primary and my husband's is secondary.

At our last reevaluation in July the caseworker said that they were extremely

understaffed and that lots more people were applying so I'm sure the waits are

much longer, but well worth it if your child is very physically handicapped

and/or medically needy.

>

> Hi there,

>

> We learned recently that our adult daughter with DD has qualified for the Home

Services program through DHS/DRS. We're in the process of completing the

Personal Assistant packet and plan to employ someone we know and trust to help

take some of the load off.

>

> Based on the paperwork, it looks like we have the option of setting up a

family member as an additional PA as long the PA is an adult (which she is) and

the customer receiving the PA services is an adult.

>

> Am I reading this right? Can an adult in the home (in this case it would be a

parent) be set up as the PA for their adult child with DD? Does anyone on the

list know of someone who has used the option? If so I'm interested in learning

about how this is working.

>

> One last question, I'm hoping someone can help to answer. In order to open the

case, the case worker accepted the healthcare POA we have for our daughter but

said this document will work only temporarily. She said that we will need to

obtain a court POA. We asked for clarification on what she meant, but we're

still unclear on what she needs. For those on the list more familiar with this

process, we're wondering if maybe what she meant is that we now need to apply

for legal guardianship. Up to this point, we haven't needed it but we're willing

to go this route if we need to.

>

> Any thoughts or insights any of you can provide on this or any of our other

questions would be much appreciated, as we don't want to do this wrong.

>

> Kim

>

[Guest guest]

Diane,

Thanks so much for sharing your story!

Important note to parents who’s kids are I/DD but who do not have physical

challenges – APPLY ANYWAY! When this waiver was first created, it may have

been intended for those with physical challenges; however, by definition they

need to use the federal Social Security guideline for determining eligibility,

and for that, they’ll do a Determination of Need looking at ability to

complete Activities of Daily Living. As we all know, many of our individuals

with I/DDs cannot independently complete Activities of Daily Living! So when

you go through the initial referral phone call, don’t be discouraged if the

person on the other end of the line tries to tell you your adult child does not

qualify. Insist on an intake meeting at your home. It’s only then that the

DRS person will be able to determine if your adult child can, in fact, meet the

eligibility criteria, and how many hours a month they will be approved for

(it’s variable, based on the person’s level of need, imagine that.) My

daughter, who has pretty significant autism but no physical challenges, was

qualified for 160 hours/month (40 hours/week) – which using Diane’s

$11.55/hour current rate of pay amounts to a meaningful monthly amount!

And unlike the DHS/DD Home Based Waiver (why do they give these such nearly

identical names?) the DRS Home Services Waiver is not currently written to be

contingent on ‘as funds are appropriated by the legislature’. If you are

deemed eligible, you get the funding. There is no waiting list. And as Diane

and I can attest to, it will be on the spot, immediate.

Weird, huh?

After the first of the year, we’ll try to delve into this in more detail.

I’m not sure why there are still parents out there not getting this

information when their kids turn 18. It should be part of the ‘transition

linkages’ package we all get.

L.

From: Diane

Sent: Wednesday, December 07, 2011 8:44 AM

IPADDUnite

Subject: Re: question about PA for adult with DD

My son Evan was approved for Home Services money in 2009. I found out about this

funding avenue totally by accident at my son's exit IEP meeting from high

school. Because I told them that Evan would hate a workshop and that I had seen

several of his friends work with agencies for 6 months or more trying to find a

job in the community only to be told that they were unemployable, I knew not to

even try. It was then that Home Services was brought up.

We had the appointment within two weeks and the caseworker approved him on the

spot! I felt like I had died and gone to heaven! No - I need to bring this back

to my supervisor, no- I need to send this to Springfield. I started receiving

the money within the month! Amazing!

I am his PA with my husband signing the customer signature as his guardian. We

are both Evan's legal guardians. The pay since our raise in July is $11.55 per

hour. I also get enough hours to qualify for insurance coverage for myself and

that is FREE. So, now their insurance is primary and my husband's is secondary.

At our last reevaluation in July the caseworker said that they were extremely

understaffed and that lots more people were applying so I'm sure the waits are

much longer, but well worth it if your child is very physically handicapped

and/or medically needy.

Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use.

[Guest guest]

Hi Laurie,

 

I think the going rate for a PA is now in the $11 range. It's not much, but

every little bit will be a big help.

 

As far as timing goes, our daughter has been on the PUNS list for a number of

years, I think at least four. We would have signed up sooner, but to be honest,

we didn't know it existed until she was well into her teens.

 

In the beginning we were considered an urgent need for the PUNS list. A couple

or three years ago, we were raised to emergency status. This was after the case

worker wanted to keep us at urgent need level. That update meeting happened back

in August 2010, I think. I'd been holding it together pretty well up to that

point. I guess it wasn't until after our case worker said our status wouldn't be

changing that I realized how much I'd been hoping to hear good news. 

 

A bit of background: Our daughter is a primordial dwarf. At 19 she is the size

of a two year old. She survived a ruptured aneurysm and stroke in 2001. As a

result of her extremely small size and the effects of the aneurysm rupture, she

needs a one on one to help complete the most basic of tasks. She also has

chronic kidney disease, a degenerative brain condition called moya-moya,

which makes her prone to seizures and strokes, and she is living with multiple

aneurysms in her head and kidney. She is prone to illness, and needs constant

monitoring and doctors visits for these conditions. 

 

Back in August 2010, after learning that our status wouldn't be changing, I

remember I burst into tears. I remember asking what it would take to move us

up. Another aneurysm rupture? It was at this point the energy in the room

shifted, and the case worker began advocating for us. Elena's health had taken a

header in the months prior to that update meeting. Working together, we found

a phrase on the intake form that allowed us to move our case up to emergency

status. Not that it mattered all that much. Even with this status change, I

was told that the crisis cases would be served first, and that the wait for

services for folks at emergency status was running three-six months. I asked if

she could tell me what determined who was picked next and she wasn't able to

say.

 

She encouraged us to seek home services from DRS. She made the referral call

for us. DHS came for a visit in September 2010. Unfortunately, we didn't get

the score needed in order to qualify for help. We later learned this was partly

because we'd presented things as too glass half full instead of the way it

really is, and partly because Elena was still in school. 

 

Elena's health continued to deteriorate. I wrestled with a sense of defeat.

Things didn't start " moving " until late April when I mustered the energy to

call my PUNS case manager and beg for help. By the time I made the call, our

daughter had been out of school since the beginning of March. Her health had

deteriorated. She'd been hospitalized for much of the time. We learned she

needed multiple, life-saving brain surgeries. We got on the list for another

visit from DRS, and were told it would be 30 days before they could come out.

They never came. 

 

After calling DRS and leaving mutliple messages that were never returned, I

called our PUNS person. This was in mid or late September, I think, after

Elena's third neurosurgery. Our contact at Service Inc, the keeper of the list,

was livid that we hadn't heard from DHS since our April referral. Both she and

her boss called the agency. She called me to say I should expect a call from

DRS within 24 hours and if they didn't call that I should let her know. That's

when the ball got rolling.

 

In mid October or so we got our visit, and Elena qualified. We needed then to

wait for the doctor to confirm what we'd told the case worker. That took a

couple weeks and additional info, and now we're to the point where our foot is

in the door, so to speak. Sorry for the long answer, but if it helps anyone else

going through the process then it's worth it.

 

Kim

 

From: Jerue Family <jeruefamily@...>

Subject: Re: question about PA for adult with DD

IPADDUnite

Date: Tuesday, December 6, 2011, 6:56 PM

 

Hi Kim,

We had several years of experience with DRS Home Services Personal Assistant

services, and it worked great for us. What’s the hourly rate now for PAs? Is

it in the $11.00/hour range?

Glad to hear that you have someone you know and trust, because the only negative

I’d have to share about the program were the PAs sent by two agencies I at

first contacted, before realizing most of t hem were CNAs and were not

accustomed nor familiar with developmental disabilities/autism. Then we went to

Plan B, which was to sign me up to be our daughter’s PA (since I handle most

of those personal, intimate situations like showering, dressing, etc anyway). It

worked out well, my husband became the Representative Payee (we have

guardianship) so he signed off on the timesheets & we were good to go. It was a

huge help to our family.

Not sure what POA stands for in your post, but I’m sure others will know. Hope

that helps!

Mind if I ask what county you’re from and how long did the process take from

time you made the first phone call/referral to you getting the approval? I’ve

heard from many families that it’s taking many months now, which must mean

that more are applying. When we did it, there was about a 30-day wait for the

appt; daughter was approved on the spot in our home; and services/funding became

available the next day. I’m still amazed by that!

Laurie

From: kim

Sent: Tuesday, December 06, 2011 5:35 PM

IPADDUnite

Subject: question about PA for adult with DD

Hi there,

We learned recently that our adult daughter with DD has qualified for the Home

Services program through DHS/DRS. We're in the process of completing the

Personal Assistant packet and plan to employ someone we know and trust to help

take some of the load off.

Based on the paperwork, it looks like we have the option of setting up a family

member as an additional PA as long the PA is an adult (which she is) and the

customer receiving the PA services is an adult.

Am I reading this right? Can an adult in the home (in this case it would be a

parent) be set up as the PA for their adult child with DD? Does anyone on the

list know of someone who has used the option? If so I'm interested in learning

about how this is working.

One last question, I'm hoping someone can help to answer. In order to open the

case, the case worker accepted the healthcare POA we have for our daughter but

said this document will work only temporarily. She said that we will need to

obtain a court POA. We asked for clarification on what she meant, but we're

still unclear on what she needs. For those on the list more familiar with this

process, we're wondering if maybe what she meant is that we now need to apply

for legal guardianship. Up to this point, we haven't needed it but we're willing

to go this route if we need to.

Any thoughts or insights any of you can provide on this or any of our other

questions would be much appreciated, as we don't want to do this wrong.

Kim

[Guest guest]

Kim,

A huge cyber-hug to you for all that you’ve experienced and for the journey

you wake up to face every single day. I’m glad you found us. Can you feel

the collective hug? I think I can safely say it’s coming at you from all 900

of us after reading your story.

It is inconceivable that your daughter was initially deemed ineligible for Home

Services, no matter how ‘glass half full’ you may have presented her case.

Thank god you were persistent.

You must be very tired. I also live in Will County, and will contact you

off-list to see how we can help or support you on a going-forward basis.

Laurie

From: kim winters

Sent: Wednesday, December 07, 2011 5:36 PM

IPADDUnite

Subject: Re: question about PA for adult with DD

Hi Laurie,

I think the going rate for a PA is now in the $11 range. It's not much, but

every little bit will be a big help.

As far as timing goes, our daughter has been on the PUNS list for a number of

years, I think at least four. We would have signed up sooner, but to be honest,

we didn't know it existed until she was well into her teens.

In the beginning we were considered an urgent need for the PUNS list. A couple

or three years ago, we were raised to emergency status. This was after the case

worker wanted to keep us at urgent need level. That update meeting happened back

in August 2010, I think. I'd been holding it together pretty well up to that

point. I guess it wasn't until after our case worker said our status wouldn't be

changing that I realized how much I'd been hoping to hear good news.

A bit of background: Our daughter is a primordial dwarf. At 19 she is the size

of a two year old. She survived a ruptured aneurysm and stroke in 2001. As a

result of her extremely small size and the effects of the aneurysm rupture, she

needs a one on one to help complete the most basic of tasks. She also has

chronic kidney disease, a degenerative brain condition called moya-moya, which

makes her prone to seizures and strokes, and she is living with multiple

aneurysms in her head and kidney. She is prone to illness, and needs constant

monitoring and doctors visits for these conditions.

Back in August 2010, after learning that our status wouldn't be changing, I

remember I burst into tears. I remember asking what it would take to move us up.

Another aneurysm rupture? It was at this point the energy in the room shifted,

and the case worker began advocating for us. Elena's health had taken a header

in the months prior to that update meeting. Working together, we found a phrase

on the intake form that allowed us to move our case up to emergency status. Not

that it mattered all that much. Even with this status change, I was told that

the crisis cases would be served first, and that the wait for services for folks

at emergency status was running three-six months. I asked if she could tell me

what determined who was picked next and she wasn't able to say.

She encouraged us to seek home services from DRS. She made the referral call for

us. DHS came for a visit in September 2010. Unfortunately, we didn't get the

score needed in order to qualify for help. We later learned this was partly

because we'd presented things as too glass half full instead of the way it

really is, and partly because Elena was still in school.

Elena's health continued to deteriorate. I wrestled with a sense of defeat.

Things didn't start " moving " until late April when I mustered the energy to call

my PUNS case manager and beg for help. By the time I made the call, our daughter

had been out of school since the beginning of March. Her health had

deteriorated. She'd been hospitalized for much of the time. We learned she

needed multiple, life-saving brain surgeries. We got on the list for another

visit from DRS, and were told it would be 30 days before they could come out.

They never came.

After calling DRS and leaving mutliple messages that were never returned, I

called our PUNS person. This was in mid or late September, I think, after

Elena's third neurosurgery. Our contact at Service Inc, the keeper of the list,

was livid that we hadn't heard from DHS since our April referral. Both she and

her boss called the agency. She called me to say I should expect a call from DRS

within 24 hours and if they didn't call that I should let her know. That's when

the ball got rolling.

In mid October or so we got our visit, and Elena qualified. We needed then to

wait for the doctor to confirm what we'd told the case worker. That took a

couple weeks and additional info, and now we're to the point where our foot is

in the door, so to speak. Sorry for the long answer, but if it helps anyone else

going through the process then it's worth it.

Kim

From: Jerue Family <mailto:jeruefamily%40comcast.net>

Subject: Re: question about PA for adult with DD

mailto:IPADDUnite%40

Date: Tuesday, December 6, 2011, 6:56 PM

Hi Kim,

We had several years of experience with DRS Home Services Personal Assistant

services, and it worked great for us. What’s the hourly rate now for PAs? Is

it in the $11.00/hour range?

Glad to hear that you have someone you know and trust, because the only negative

I’d have to share about the program were the PAs sent by two agencies I at

first contacted, before realizing most of t hem were CNAs and were not

accustomed nor familiar with developmental disabilities/autism. Then we went to

Plan B, which was to sign me up to be our daughter’s PA (since I handle most

of those personal, intimate situations like showering, dressing, etc anyway). It

worked out well, my husband became the Representative Payee (we have

guardianship) so he signed off on the timesheets & we were good to go. It was a

huge help to our family.

Not sure what POA stands for in your post, but I’m sure others will know. Hope

that helps!

Mind if I ask what county you’re from and how long did the process take from

time you made the first phone call/referral to you getting the approval? I’ve

heard from many families that it’s taking many months now, which must mean

that more are applying. When we did it, there was about a 30-day wait for the

appt; daughter was approved on the spot in our home; and services/funding became

available the next day. I’m still amazed by that!

Laurie

From: kim

Sent: Tuesday, December 06, 2011 5:35 PM

mailto:IPADDUnite%40

Subject: question about PA for adult with DD

Hi there,

We learned recently that our adult daughter with DD has qualified for the Home

Services program through DHS/DRS. We're in the process of completing the

Personal Assistant packet and plan to employ someone we know and trust to help

take some of the load off.

Based on the paperwork, it looks like we have the option of setting up a family

member as an additional PA as long the PA is an adult (which she is) and the

customer receiving the PA services is an adult.

Am I reading this right? Can an adult in the home (in this case it would be a

parent) be set up as the PA for their adult child with DD? Does anyone on the

list know of someone who has used the option? If so I'm interested in learning

about how this is working.

One last question, I'm hoping someone can help to answer. In order to open the

case, the case worker accepted the healthcare POA we have for our daughter but

said this document will work only temporarily. She said that we will need to

obtain a court POA. We asked for clarification on what she meant, but we're

still unclear on what she needs. For those on the list more familiar with this

process, we're wondering if maybe what she meant is that we now need to apply

for legal guardianship. Up to this point, we haven't needed it but we're willing

to go this route if we need to.

Any thoughts or insights any of you can provide on this or any of our other

questions would be much appreciated, as we don't want to do this wrong.

Kim

[Guest guest]

I just want to say my heart goes out to you and your daughter Kim. I have

nothing to complain about after reading your story.

I hope you have a very peaceful holiday season and new year.

H.

Re: question about PA for adult with DD

Hi Laurie,

think the going rate for a PA is now in the $11 range. It's not much, but

very little bit will be a big help.

s far as timing goes, our daughter has been on the PUNS list for a number of

ears, I think at least four. We would have signed up sooner, but to be honest,

e didn't know it existed until she was well into her teens.

n the beginning we were considered an urgent need for the PUNS list. A couple

r three years ago, we were raised to emergency status. This was after the case

orker wanted to keep us at urgent need level. That update meeting happened back

n August 2010, I think. I'd been holding it together pretty well up to that

oint. I guess it wasn't until after our case worker said our status wouldn't be

hanging that I realized how much I'd been hoping to hear good news.

bit of background: Our daughter is a primordial dwarf. At 19 she is the size

f a two year old. She survived a ruptured aneurysm and stroke in 2001. As a

esult of her extremely small size and the effects of the aneurysm rupture, she

eeds a one on one to help complete the most basic of tasks. She also has

hronic kidney disease, a degenerative brain condition called moya-moya,

hich makes her prone to seizures and strokes, and she is living with multiple

neurysms in her head and kidney. She is prone to illness, and needs constant

onitoring and doctors visits for these conditions.

ack in August 2010, after learning that our status wouldn't be changing, I

emember I burst into tears. I remember asking what it would take to move us up.

nother aneurysm rupture? It was at this point the energy in the room shifted,

nd the case worker began advocating for us. Elena's health had taken a

eader in the months prior to that update meeting. Working together, we found a

hrase on the intake form that allowed us to move our case up to emergency

tatus. Not that it mattered all that much. Even with this status change, I

as told that the crisis cases would be served first, and that the wait for

ervices for folks at emergency status was running three-six months. I asked if

he could tell me what determined who was picked next and she wasn't able to

ay.

he encouraged us to seek home services from DRS. She made the referral call for

s. DHS came for a visit in September 2010. Unfortunately, we didn't get the

core needed in order to qualify for help. We later learned this was partly

ecause we'd presented things as too glass half full instead of the way it

eally is, and partly because Elena was still in school.

lena's health continued to deteriorate. I wrestled with a sense of defeat.

hings didn't start " moving " until late April when I mustered the energy to

all my PUNS case manager and beg for help. By the time I made the call, our

aughter had been out of school since the beginning of March. Her health had

eteriorated. She'd been hospitalized for much of the time. We learned she

eeded multiple, life-saving brain surgeries. We got on the list for another

isit from DRS, and were told it would be 30 days before they could come out.

hey never came.

fter calling DRS and leaving mutliple messages that were never returned, I

alled our PUNS person. This was in mid or late September, I think, after

lena's third neurosurgery. Our contact at Service Inc, the keeper of the list,

as livid that we hadn't heard from DHS since our April referral. Both she and

er boss called the agency. She called me to say I should expect a call from DRS

ithin 24 hours and if they didn't call that I should let her know. That's when

he ball got rolling.

n mid October or so we got our visit, and Elena qualified. We needed then to

ait for the doctor to confirm what we'd told the case worker. That took a

ouple weeks and additional info, and now we're to the point where our foot is

n the door, so to speak. Sorry for the long answer, but if it helps anyone else

oing through the process then it's worth it.

im

rom: Jerue Family <jeruefamily@...>

ubject: Re: question about PA for adult with DD

o: IPADDUnite

ate: Tuesday, December 6, 2011, 6:56 PM

Hi Kim,

We had several years of experience with DRS Home Services Personal Assistant

ervices, and it worked great for us. What’s the hourly rate now for PAs? Is it

n the $11.00/hour range?

Glad to hear that you have someone you know and trust, because the only negative

’d have to share about the program were the PAs sent by two agencies I at

first

ontacted, before realizing most of t hem were CNAs and were not accustomed nor

amiliar with developmental disabilities/autism. Then we went to Plan B, which

as to sign me up to be our daughter’s PA (since I handle most of those

ersonal, intimate situations like showering, dressing, etc anyway). It worked

ut well, my husband became the Representative Payee (we have guardianship) so

e signed off on the timesheets & we were good to go. It was a huge help to our

amily.

Not sure what POA stands for in your post, but I’m sure others will know. Hope

hat helps!

Mind if I ask what county you’re from and how long did the process take from

ime you made the first phone call/referral to you getting the approval? I’ve

eard from many families that it’s taking many months now, which must mean that

ore are applying. When we did it, there was about a 30-day wait for the appt;

aughter was approved on the spot in our home; and services/funding became

vailable the next day. I’m still amazed by that!

Laurie

From: kim

ent: Tuesday, December 06, 2011 5:35 PM

o: IPADDUnite

ubject: question about PA for adult with DD

Hi there,

We learned recently that our adult daughter with DD has qualified for the Home

ervices program through DHS/DRS. We're in the process of completing the

ersonal Assistant packet and plan to employ someone we know and trust to help

ake some of the load off.

Based on the paperwork, it looks like we have the option of setting up a family

ember as an additional PA as long the PA is an adult (which she is) and the

ustomer receiving the PA services is an adult.

Am I reading this right? Can an adult in the home (in this case it would be a

arent) be set up as the PA for their adult child with DD? Does anyone on the

ist know of someone who has used the option? If so I'm interested in learning

bout how this is working.

One last question, I'm hoping someone can help to answer. In order to open the

ase, the case worker accepted the healthcare POA we have for our daughter but

aid this document will work only temporarily. She said that we will need to

btain a court POA. We asked for clarification on what she meant, but we're

till unclear on what she needs. For those on the list more familiar with this

rocess, we're wondering if maybe what she meant is that we now need to apply

or legal guardianship. Up to this point, we haven't needed it but we're willing

o go this route if we need to.

Any thoughts or insights any of you can provide on this or any of our other

uestions would be much appreciated, as we don't want to do this wrong.

Kim

[Guest guest]

Hi Kim, congrats on finally getting some help and I'm sorry for all of

the struggles to get it. I'm not sure how some of our elected officials

sleep knowing (because I know we are telling them!) how our individuals

struggle and how they can make help possible by cleaning up the mess in

Illinois. Sorry if I offend anyone. My daughter does get Home Based

services and I am one of her PA's. She is her own guardian. I fill out

a timesheet twice a month which she signs and I fax in and the check is

direct deposited. I have personally had no problems. I do also send a

copy of a spreadsheet on which I identify what services she is paying

for (training, transport, recreation, etc.) and the hours charged. I do

this for any PA working for her. . My daily calendar states what we

did (other than a basic 1 hour per day that is allocated for personal

care and supervision), and I save those also. We also identify which of

her goals, as identified by Service and her agency, that we worked on.

Probably is overkill but I do not trust the system to not question the

hours after the fact, and I'm pretty " anal " about record keeping. It

also is a fact that I cannot remember sometimes what we do if it isn't

written down!

Best wishes to your family, Gloria

[Guest guest]

Thanks, Gloria. I think your response about record keeping will help many. I

agree that keeping thorough and accurate records is a good idea. We had

requests from SSA for information that dated back two years...it drove us nuts,

but at least we had the data they were requesting. It is way easier to keep the

records than to try to piece information together, after the fact.

Ellen

Ellen Garber Bronfeld

egskb@...

[Guest guest]

I do accounting for small businesses, so I have Angel's account set up as a

'company'. I can report whatever I want, whenever I want. I think it may be

worth it for some parents to look into Quicken or some other software that is

geared to help individuals with their check books.

>

> Thanks, Gloria. I think your response about record keeping will help many. I

agree that keeping thorough and accurate records is a good idea. We had

requests from SSA for information that dated back two years...it drove us nuts,

but at least we had the data they were requesting. It is way easier to keep the

records than to try to piece information together, after the fact.

> Ellen

> Ellen Garber Bronfeld

> egskb@...

>

>