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If the child receives “help†or financial assistance for food and/or

shelter, be it from parents, a Special Needs Trust (that permits such

expenditures – not all trusts do permit such expenditures), or otherwise, and

they are on SSI, the worse that happens is a 1/3 reduction to the SSI. If they

are on SSDI, there is no reduction. It will not impact Medicaid. Private pay

for non-residential services (shelter) and not for food, is not an issue. If

anyone wants a copy of the Special Needs Alliance Special Needs Trust

Administration Manual, email me at

brian@...<mailto:brian@...>, and I will reply with a

PDF attachment of the manual (available in both English and Spanish).

Rubin<mailto:brian@...>*

[cid:image002.jpg@...]<http://www.rubinlawcorp.com/>

* President, The Arc of Illinois 2011-2013

* Member by invitation of the Special Needs Alliance (web

site<http://www.specialneedsalliance.org/>). The SNA is the national non-profit

association of experienced " Special Needs Planning " Attorneys. Rubin is a

member of SNA’s Board of Directors.

* Member of the Special Needs Law Steering Committee of

NAELA,<http://www.naela.org/>the National Academy of Elder Law Attorneys.

<http://www.naela.org/>

* Was a Charter Member of the Academy of Special Needs Planners

* Has been awarded the dale Hubbell Peer Review<http://martindale.com/>

Rating of AV Preeminent, the highest rating given<http://martindale.com/>.

* For more information about Rubin, please visit our web

site<http://www.rubinlawcorp.com/>.

Notices:

1. This message does not create an attorney-client relationship, and is not

legal advice absent such a relationship with the recipient. This message may

contain confidential information protected by the attorney-client and/or work

product privilege. The information is only for the use of the intended

recipient. If you are not such recipient, disclosure, copying, distribution or

reliance upon this e-mail is strictly prohibited. If you have received this

transmission in error, please notify the offices of Rubin Law, A Professional

Corporation by e-mail and destroy the original message and all copies.

2. IRS CIRCULAR 230 NOTICE: TO THE EXTENT THAT THIS MESSAGE OR ANY ATTACHMENT

CONCERNS TAX MATTERS, IT IS NOT INTENDED TO BE USED AND CANNOT BE USED BY A

TAXPAYER FOR THE PURPOSE OF AVOIDING PENALTIES THAT MAY BE IMPOSED BY LAW.

3. Disclaimer Regarding Electronic Signature. If this communication concerns

negotiation of a contract or agreement, electronic signature rules do not apply

to this communication: contract formation in this matter shall occur only with

manually-affixed original signatures on original documents. The Signature given

hereon is not an electronic signature and is provided only for the purposes of

providing information as to the identity of the sender and for no other

purpose(s) whatsoever.

From: IPADDUnite [mailto:IPADDUnite ] On Behalf

Of Jerue Family

Sent: Tuesday, November 15, 2011 11:13 AM

IPADDUnite

Subject: SSI & Private Pay question

, Sherri or anyone with knowledge of SSI - pls help me understand something

about ‘private pay’ arrangements...

I hear from lots of families, whose children are entering adulthood or who have

exited special education, and these families are without with Home Based

Community Support Waiver or the Residential Waivers. Essentially they will rely

on their 18+ year old’s monthly SSI payments ($674/month) to pay for adult

services. They often supplement this with payments from the family to various

providers. (social service providers are now accepting private pay arrangements

for day programs; Elmhurst College’s ELSA program is private pay; and now we

are reading about this new Turning Pointe arrangement – and there are many

many others cropping up all over the place.)

These private pay services or programs may provide high quality services and

supports to adults with DDs. In exchange, they charge fees that far exceed what

the average adult with a developmental disability, who is not gainfully

employed, can afford to pay out of their monthly SSI max of $674/month.

My question is this: When we go through the eligibility determination for SSI

and Medicaid, our children become their own ‘head of household’ for IRS/SSA

calculations, correct?

So can we legally make these payments for private pay services for an adult

child without jeopardizing their public benefits? Can they be paid through their

SNT’s? Can parents just write the checks themselves?

Or – and I’m thinking this might be the answer – do you forego/lose

SSI/Medicaid/Waiver eligibility/funding when you decide to enter into one of

these private pay arrangements, because now the adult with the DD is clearly

depending on their parents for financial help? Which may not be a big deal for

the families, because if they can afford these service fees, they probably

don’t need the public funding anyway?

I’d like to understand this better so I’m not telling people the wrong thing

when they ask me. I’ve never really thought it through before now. It’s a

question that comes up more and more as people are exiting school without the

old 72D funding that used to come more routinely upon exit.

Thanks in advance.

L.

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Whew! Thanks for the quick response.

From: N Rubin

Sent: Tuesday, November 15, 2011 11:26 AM

IPADDUnite

Subject: RE: SSI & Private Pay question

If the child receives “help†or financial assistance for food and/or

shelter, be it from parents, a Special Needs Trust (that permits such

expenditures – not all trusts do permit such expenditures), or otherwise, and

they are on SSI, the worse that happens is a 1/3 reduction to the SSI. If they

are on SSDI, there is no reduction. It will not impact Medicaid. Private pay for

non-residential services (shelter) and not for food, is not an issue. If anyone

wants a copy of the Special Needs Alliance Special Needs Trust Administration

Manual, email me at

mailto:brian%40rubinlawcorp.com<mailto:mailto:brian%40rubinlawcorp.com>, and I

will reply with a PDF attachment of the manual (available in both English and

Spanish).

Rubin<mailto:mailto:brian%40rubinlawcorp.com>*

[cid:mailto:image002.jpg%4001CCA389.59E504D0]<http://www.rubinlawcorp.com/>

* President, The Arc of Illinois 2011-2013

* Member by invitation of the Special Needs Alliance (web

site<http://www.specialneedsalliance.org/>). The SNA is the national non-profit

association of experienced " Special Needs Planning " Attorneys. Rubin is a

member of SNA’s Board of Directors.

* Member of the Special Needs Law Steering Committee of

NAELA,<http://www.naela.org/>the National Academy of Elder Law Attorneys.

<http://www.naela.org/>

* Was a Charter Member of the Academy of Special Needs Planners

* Has been awarded the dale Hubbell Peer Review<http://martindale.com/>

Rating of AV Preeminent, the highest rating given<http://martindale.com/>.

* For more information about Rubin, please visit our web

site<http://www.rubinlawcorp.com/>.

Notices:

1. This message does not create an attorney-client relationship, and is not

legal advice absent such a relationship with the recipient. This message may

contain confidential information protected by the attorney-client and/or work

product privilege. The information is only for the use of the intended

recipient. If you are not such recipient, disclosure, copying, distribution or

reliance upon this e-mail is strictly prohibited. If you have received this

transmission in error, please notify the offices of Rubin Law, A Professional

Corporation by e-mail and destroy the original message and all copies.

2. IRS CIRCULAR 230 NOTICE: TO THE EXTENT THAT THIS MESSAGE OR ANY ATTACHMENT

CONCERNS TAX MATTERS, IT IS NOT INTENDED TO BE USED AND CANNOT BE USED BY A

TAXPAYER FOR THE PURPOSE OF AVOIDING PENALTIES THAT MAY BE IMPOSED BY LAW.

3. Disclaimer Regarding Electronic Signature. If this communication concerns

negotiation of a contract or agreement, electronic signature rules do not apply

to this communication: contract formation in this matter shall occur only with

manually-affixed original signatures on original documents. The Signature given

hereon is not an electronic signature and is provided only for the purposes of

providing information as to the identity of the sender and for no other

purpose(s) whatsoever.

From: mailto:IPADDUnite%40

[mailto:mailto:IPADDUnite%40] On Behalf Of Jerue Family

Sent: Tuesday, November 15, 2011 11:13 AM

mailto:IPADDUnite%40

Subject: SSI & Private Pay question

, Sherri or anyone with knowledge of SSI - pls help me understand something

about ‘private pay’ arrangements...

I hear from lots of families, whose children are entering adulthood or who have

exited special education, and these families are without with Home Based

Community Support Waiver or the Residential Waivers. Essentially they will rely

on their 18+ year old’s monthly SSI payments ($674/month) to pay for adult

services. They often supplement this with payments from the family to various

providers. (social service providers are now accepting private pay arrangements

for day programs; Elmhurst College’s ELSA program is private pay; and now we

are reading about this new Turning Pointe arrangement – and there are many

many others cropping up all over the place.)

These private pay services or programs may provide high quality services and

supports to adults with DDs. In exchange, they charge fees that far exceed what

the average adult with a developmental disability, who is not gainfully

employed, can afford to pay out of their monthly SSI max of $674/month.

My question is this: When we go through the eligibility determination for SSI

and Medicaid, our children become their own ‘head of household’ for IRS/SSA

calculations, correct?

So can we legally make these payments for private pay services for an adult

child without jeopardizing their public benefits? Can they be paid through their

SNT’s? Can parents just write the checks themselves?

Or – and I’m thinking this might be the answer – do you forego/lose

SSI/Medicaid/Waiver eligibility/funding when you decide to enter into one of

these private pay arrangements, because now the adult with the DD is clearly

depending on their parents for financial help? Which may not be a big deal for

the families, because if they can afford these service fees, they probably

don’t need the public funding anyway?

I’d like to understand this better so I’m not telling people the wrong thing

when they ask me. I’ve never really thought it through before now. It’s a

question that comes up more and more as people are exiting school without the

old 72D funding that used to come more routinely upon exit.

Thanks in advance.

L.

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Good Point Laurie and thanks for your response .

I think Sherri makes this clear in her presentation about Benefits; we need to

get our kids off SSI and on SSDI. However Ive learned easier said than done.

Thais

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I want to clarify Thais' comment that we want to get our children off SSI and

SSDI...

In an ideal world, our loved ones would all be competitively (earning at least

minimum wage) employed and able to make more than their entitlement money. They

would be earning work quarters that would move them from the Medicaid system to

Medicare.

We are not currently living in that perfect world, so, I don't want anyone to

misunderstand and think that they should not be accessing what their loved one

is entitled to, whether it be SSI or SSDI, if they are not earning a living

wage.

Ellen

Ellen Garber Bronfeld

egskb@...

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Hi Ellen,  I concur. As parents, we need to make an educated and informed

decision when assisting our adult child into working at the level where they no

longer qualify for DAC benefits and or lower amount of benefits under the

disabled individual's own work record.  I think it is important to stress that

in our attempt to help our child work his/her way off' of SSI or SSDI, we do not

leave them in a worse off position.  I've seen situations where parents have

created 'work' situations with their own business or a friend or family

member's business to enable their adult child to earn credits and an income. 

In the end when the parent or family friend or relative was no longer able

to assist  the adult child to be employable, the disabled individual often

lost his/her income stream and because they had proved themselves capable of SGA

could not qualify for SSI or SSDI leaving them without an income and without

benefits.  

 

Maximizing an individual's potential is one thing but if their job security is

dependent on a certain person owning the company or supervising him/her or if

the individual relies on a parent or other family members support to be

productive, that individual may be better off working part time and retaining

future eligibility for gov't assistance.  It is important that we don't make

our child look more capable than what s/he truly is.  One must ask, if I wasn't

here to assist/enable my child, could s/he do this job fully on their own??  

Terrie Varnet

________________________________

From: ELLEN BRONFELD <egskb@...>

IPADDUnite

Sent: Wednesday, November 16, 2011 7:56 AM

Subject: Re: SSI & Private Pay question

 

I want to clarify Thais' comment that we want to get our children off SSI and

SSDI...

In an ideal world, our loved ones would all be competitively (earning at least

minimum wage) employed and able to make more than their entitlement money. They

would be earning work quarters that would move them from the Medicaid system to

Medicare.

We are not currently living in that perfect world, so, I don't want anyone to

misunderstand and think that they should not be accessing what their loved one

is entitled to, whether it be SSI or SSDI, if they are not earning a living

wage.

Ellen

Ellen Garber Bronfeld

egskb@...

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such a tough spot to be in for some of us..........or all of us I guess.........

Re: Re: SSI & Private Pay question

Hi Ellen, I concur. As parents, we need to make an educated and informed

ecision when assisting our adult child into working at the level where they no

onger qualify for DAC benefits and or lower amount of benefits under the

isabled individual's own work record. I think it is important to stress that

n our attempt to help our child work his/her way off' of SSI or SSDI, we do not

eave them in a worse off position. I've seen situations where parents have

reated 'work' situations with their own business or a friend or family member's

usiness to enable their adult child to earn credits and an income. In the end

hen the parent or family friend or relative was no longer able to assist the

dult child to be employable, the disabled individual often lost his/her income

tream and because they had proved themselves capable of SGA could not qualify

or SSI or SSDI leaving them without an income and without benefits.

aximizing an individual's potential is one thing but if their job security is

ependent on a certain person owning the company or supervising him/her or if

he individual relies on a parent or other family members support to be

roductive, that individual may be better off working part time and retaining

uture eligibility for gov't assistance. It is important that we don't make our

hild look more capable than what s/he truly is. One must ask, if I wasn't here

o assist/enable my child, could s/he do this job fully on their own??

errie Varnet

_______________________________

rom: ELLEN BRONFELD <egskb@...>

o: IPADDUnite

ent: Wednesday, November 16, 2011 7:56 AM

ubject: Re: SSI & Private Pay question

want to clarify Thais' comment that we want to get our children off SSI and

SDI...

n an ideal world, our loved ones would all be competitively (earning at least

inimum wage) employed and able to make more than their entitlement money. They

ould be earning work quarters that would move them from the Medicaid system to

edicare.

e are not currently living in that perfect world, so, I don't want anyone to

isunderstand and think that they should not be accessing what their loved one

s entitled to, whether it be SSI or SSDI, if they are not earning a living

age.

llen

llen Garber Bronfeld

gskb@...

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EXCELLENT ADVICE.

________________________________

From: Theresa Varnet <tvarnet@...>

" IPADDUnite " <IPADDUnite >

Sent: Wed, November 16, 2011 8:01:24 AM

Subject: Re: Re: SSI & Private Pay question

 

Hi Ellen,  I concur. As parents, we need to make an educated and informed

decision when assisting our adult child into working at the level where they no

longer qualify for DAC benefits and or lower amount of benefits under the

disabled individual's own work record.  I think it is important to stress that

in our attempt to help our child work his/her way off' of SSI or SSDI, we do not

leave them in a worse off position.  I've seen situations where parents have

created 'work' situations with their own business or a friend or family

member's

business to enable their adult child to earn credits and an income.  In the end

when the parent or family friend or relative was no longer able to assist  the

adult child to be employable, the disabled individual often lost his/her income

stream and because they had proved themselves capable of SGA could not qualify

for SSI or SSDI leaving them without an income and without benefits.  

 

Maximizing an individual's potential is one thing but if their job security is

dependent on a certain person owning the company or supervising him/her or if

the individual relies on a parent or other family members support to be

productive, that individual may be better off working part time and retaining

future eligibility for gov't assistance.  It is important that we don't make

our

child look more capable than what s/he truly is.  One must ask, if I wasn't

here

to assist/enable my child, could s/he do this job fully on their own??  

Terrie Varnet

________________________________

From: ELLEN BRONFELD <egskb@...>

IPADDUnite

Sent: Wednesday, November 16, 2011 7:56 AM

Subject: Re: SSI & Private Pay question

 

I want to clarify Thais' comment that we want to get our children off SSI and

SSDI...

In an ideal world, our loved ones would all be competitively (earning at least

minimum wage) employed and able to make more than their entitlement money. They

would be earning work quarters that would move them from the Medicaid system to

Medicare.

We are not currently living in that perfect world, so, I don't want anyone to

misunderstand and think that they should not be accessing what their loved one

is entitled to, whether it be SSI or SSDI, if they are not earning a living

wage.

Ellen

Ellen Garber Bronfeld

egskb@...

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One more benefit about SSDI--if your loved one is no longer in an educational

program and gets a paying job, SSI is reduced based on the income.  SSDI

continues on unreduced for several months after the job starts, which really

helps get over the hump of changing expenses for transportation, clothing, etc.

-Gail

________________________________

From: N Rubin <brian@...>

" IPADDUnite " <IPADDUnite >

Sent: Tuesday, November 15, 2011 11:26 AM

Subject: RE: SSI & Private Pay question

 

If the child receives “help†or financial assistance for food and/or

shelter, be it from parents, a Special Needs Trust (that permits such

expenditures – not all trusts do permit such expenditures), or otherwise, and

they are on SSI, the worse that happens is a 1/3 reduction to the SSI. If they

are on SSDI, there is no reduction. It will not impact Medicaid. Private pay

for non-residential services (shelter) and not for food, is not an issue. If

anyone wants a copy of the Special Needs Alliance Special Needs Trust

Administration Manual, email me at

brian@...<mailto:brian@...>, and I will reply with a

PDF attachment of the manual (available in both English and Spanish).

Rubin<mailto:brian@...>*

[cid:image002.jpg@...]<http://www.rubinlawcorp.com/>

* President, The Arc of Illinois 2011-2013

* Member by invitation of the Special Needs Alliance (web

site<http://www.specialneedsalliance.org/>). The SNA is the national non-profit

association of experienced " Special Needs Planning " Attorneys. Rubin is a

member of SNA’s Board of Directors.

* Member of the Special Needs Law Steering Committee of

NAELA,<http://www.naela.org/>the National Academy of Elder Law Attorneys.

<http://www.naela.org/>

* Was a Charter Member of the Academy of Special Needs Planners

* Has been awarded the dale Hubbell Peer Review<http://martindale.com/>

Rating of AV Preeminent, the highest rating given<http://martindale.com/>.

* For more information about Rubin, please visit our web

site<http://www.rubinlawcorp.com/>.

Notices:

1. This message does not create an attorney-client relationship, and is not

legal advice absent such a relationship with the recipient. This message may

contain confidential information protected by the attorney-client and/or work

product privilege. The information is only for the use of the intended

recipient. If you are not such recipient, disclosure, copying, distribution or

reliance upon this e-mail is strictly prohibited. If you have received this

transmission in error, please notify the offices of Rubin Law, A Professional

Corporation by e-mail and destroy the original message and all copies.

2. IRS CIRCULAR 230 NOTICE: TO THE EXTENT THAT THIS MESSAGE OR ANY ATTACHMENT

CONCERNS TAX MATTERS, IT IS NOT INTENDED TO BE USED AND CANNOT BE USED BY A

TAXPAYER FOR THE PURPOSE OF AVOIDING PENALTIES THAT MAY BE IMPOSED BY LAW.

3. Disclaimer Regarding Electronic Signature. If this communication concerns

negotiation of a contract or agreement, electronic signature rules do not apply

to this communication: contract formation in this matter shall occur only with

manually-affixed original signatures on original documents. The Signature given

hereon is not an electronic signature and is provided only for the purposes of

providing information as to the identity of the sender and for no other

purpose(s) whatsoever.

From: IPADDUnite [mailto:IPADDUnite ] On Behalf

Of Jerue Family

Sent: Tuesday, November 15, 2011 11:13 AM

IPADDUnite

Subject: SSI & Private Pay question

, Sherri or anyone with knowledge of SSI - pls help me understand something

about ‘private pay’ arrangements...

I hear from lots of families, whose children are entering adulthood or who have

exited special education, and these families are without with Home Based

Community Support Waiver or the Residential Waivers. Essentially they will rely

on their 18+ year old’s monthly SSI payments ($674/month) to pay for adult

services. They often supplement this with payments from the family to various

providers. (social service providers are now accepting private pay arrangements

for day programs; Elmhurst College’s ELSA program is private pay; and now we

are reading about this new Turning Pointe arrangement – and there are many

many others cropping up all over the place.)

These private pay services or programs may provide high quality services and

supports to adults with DDs. In exchange, they charge fees that far exceed what

the average adult with a developmental disability, who is not gainfully

employed, can afford to pay out of their monthly SSI max of $674/month.

My question is this: When we go through the eligibility determination for SSI

and Medicaid, our children become their own ‘head of household’ for IRS/SSA

calculations, correct?

So can we legally make these payments for private pay services for an adult

child without jeopardizing their public benefits? Can they be paid through their

SNT’s? Can parents just write the checks themselves?

Or – and I’m thinking this might be the answer – do you forego/lose

SSI/Medicaid/Waiver eligibility/funding when you decide to enter into one of

these private pay arrangements, because now the adult with the DD is clearly

depending on their parents for financial help? Which may not be a big deal for

the families, because if they can afford these service fees, they probably

don’t need the public funding anyway?

I’d like to understand this better so I’m not telling people the wrong thing

when they ask me. I’ve never really thought it through before now. It’s a

question that comes up more and more as people are exiting school without the

old 72D funding that used to come more routinely upon exit.

Thanks in advance.

L.

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