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The Importance of Including Siblings in Family Future Planning Autism NOW Webinar September 4, 2012
The Importance of Including Siblings in Family Future Planning Autism NOW Webinar September 4, 2012
The Importance of Including Siblings in Family Future Planning Autism NOW Webinar September 4, 2012

The Importance of Including Siblings in

Family Future Planning

Autism NOW Webinar September 4, 2012

President of S.I.B.S. Supporting Illinois Brothers & Sisters The Illinois Chapter of the national organization,
President of S.I.B.S.
Supporting Illinois Brothers & Sisters
The Illinois Chapter of the national organization,
SIBLING LEADERSHIP NETWORK, providing siblings
of individuals with disabilities the information, support
and tools to advocate with their brothers and sisters
and to promote the issues important to them and their
entire families.
Background • Founded in 2007, the SLN has held annual conferences to connect siblings and
Background • Founded in 2007, the SLN has held annual conferences to connect siblings and

Background

Founded in 2007, the SLN has held annual conferences to connect siblings and professionals

Developed a policy white paper with

recommendations on policy and advocacy, research, and services and supports

Partnership • Key partnerships include: – Sibling Support Project – Self Advocates Becoming Empowered –
Partnership • Key partnerships include: – Sibling Support Project – Self Advocates Becoming Empowered –

Partnership

Key partnerships include:

Sibling Support Project

Self Advocates Becoming Empowered

The Arc

Autism NOW, a national initiative of The Arc

State Chapters • New Hampshire • New York • Ohio • Pennsylvania • Tennessee •
State Chapters • New Hampshire • New York • Ohio • Pennsylvania • Tennessee •

State Chapters

New Hampshire

New York

Ohio

Pennsylvania

Tennessee

Utah

Wisconsin

Alabama

DC

Georgia

Illinois

Massachusetts

Michigan

For more information on how to

start a state chapter of the SLN,

contact Ashley Coulter at ashley.coulter@Vanderbilt.edu.

Join the SLN • Visit www.siblingleadership.org • Find us on Facebook at –
Join the SLN • Visit www.siblingleadership.org • Find us on Facebook at –

Join the SLN

Find us on Facebook at

p

Email info@siblingleadership.org

Growing up as a “Sibling”

Helps put things in perspective in life

Different than parents…

Vacations…

Trips to the Store…

Understanding our future responsibilities

14
14
14

14

How much ?

How much ?

How much ?
How much ?
How much ?
REQUIRES SPECIAL NEEDS TRUSTS
REQUIRES SPECIAL NEEDS TRUSTS
REQUIRES
SPECIAL
NEEDS
TRUSTS
REQUIRES SPECIAL NEEDS TRUSTS
Income: 2012 = $1,010 2012 = $698 1/3 reduction to $449.34 SSI Assets $2,000 Income
Income: 2012 = $1,010 2012 = $698 1/3 reduction to $449.34 SSI Assets $2,000 Income
Income: 2012 = $1,010 2012 = $698 1/3 reduction to $449.34 SSI Assets $2,000 Income
Income: 2012 = $1,010 2012 = $698 1/3 reduction to $449.34 SSI Assets $2,000 Income
Income: 2012 = $1,010 2012 = $698 1/3 reduction to $449.34 SSI Assets $2,000 Income
Income: 2012 = $1,010 2012 = $698 1/3 reduction to $449.34 SSI Assets $2,000 Income

Income:

2012 = $1,010

Income: 2012 = $1,010 2012 = $698 1/3 reduction to $449.34 SSI Assets $2,000 Income &
2012 = $698 1/3 reduction to $449.34 SSI Assets $2,000 Income & Asset Test Income
2012 = $698
1/3 reduction
to $449.34
SSI
Assets $2,000
Income & Asset Test
Income & Asset Test
$2,000 Income & Asset Test Income & Asset Test More than medical… Medicaid Income & Asset

More than medical…

Medicaid Income & Asset Test
Medicaid
Income & Asset Test
Test More than medical… Medicaid Income & Asset Test Medicare TWO YEARS JUST Income Test SSDI
Medicare TWO YEARS
Medicare
TWO YEARS
Medicaid Income & Asset Test Medicare TWO YEARS JUST Income Test SSDI CDB (DAC) on parent’s

JUST

Income Test

SSDI
SSDI

CDB (DAC) on parent’s record IF

& Asset Test Medicare TWO YEARS JUST Income Test SSDI CDB (DAC) on parent’s record IF

DATE OF ONSET BEFORE 22

Not $698 1/3 reduction to $449.34 $50 ($30) $50 ($30)
Not
$698
1/3 reduction
to $449.34
$50 ($30)
$50 ($30)
MEDICAID “DISABLED” application)…
MEDICAID “DISABLED”
application)…

39 STATES & D.C. SAME ELIGIBILITY AS SSI (all but 7, same

, … 209b
,
… 209b
 39 STATES & D.C. SAME ELIGIBILITY AS SSI (all but 7, same , … 209b
 39 STATES & D.C. SAME ELIGIBILITY AS SSI (all but 7, same , … 209b

THE REMAINING including

 39 STATES & D.C. SAME ELIGIBILITY AS SSI (all but 7, same , … 209b
 39 STATES & D.C. SAME ELIGIBILITY AS SSI (all but 7, same , … 209b

MEDICAID “BUY IN”

 MANY STATES HAVE THEM – IL = HBWD  WERE ON SSI/SSDI OR TRADITIONAL
 MANY STATES HAVE THEM – IL = HBWD
 WERE ON SSI/SSDI OR TRADITIONAL
MEDICAID – BUT NOW EARNING “TOO”

MUCH, OR ACCUMULATED MORE THAN

$2,000  & WORKING & FICA IS BEING W/H   
$2,000
& WORKING & FICA IS BEING W/H

ALLOWS TO EARN MORE INCOME ALLOWS TO HAVE MORE RESOURCES BUT PAY SMALL PREMIUM

& FICA IS BEING W/H    ALLOWS TO EARN MORE INCOME ALLOWS TO HAVE
MEDICAID “ DISABLED ”  ACCEPTANCE – MDs, Rx, DDSs ?  HAVE PRIVATE POLICY

MEDICAID DISABLED

MEDICAID “ DISABLED ”  ACCEPTANCE – MDs, Rx, DDSs ?  HAVE PRIVATE POLICY ?

ACCEPTANCE MDs, Rx, DDSs ? HAVE PRIVATE POLICY ? ADULT DIVORCE CHILD SUPPORT

How to

How to these Benefits? 1) Change in circumstances (10 day rule) 2) Redeterminations   

these Benefits?

How to these Benefits? 1) Change in circumstances (10 day rule) 2) Redeterminations   
1) Change in circumstances
1) Change in circumstances
(10 day rule)
(10 day rule)
2) Redeterminations
2) Redeterminations

 Disability  Resources 3) Inheritances – … 4) Law Suit Settlements – … 5)
Disability
 Resources
3) Inheritances –
4) Law Suit Settlements –
5) NOT just lose
have to
reimburse State(s) too!

How to NOT lose SSI or Medicaid?

How to NOT lose SSI or Medicaid?

How to NOT lose SSI or Medicaid?
How to NOT lose SSI or Medicaid?
2 Versions  Reserve  Supplemental Fund  Over & Above Government Benefits  No

2 Versions

 Reserve  Supplemental Fund  Over & Above Government Benefits  No $ limit
 Reserve
 Supplemental Fund
 Over & Above
Government Benefits
 No
$
limit
 Federal

State

 Reserve  Supplemental Fund  Over & Above Government Benefits  No $ limit 
 Reserve  Supplemental Fund  Over & Above Government Benefits  No $ limit 
INHERITANCE GIFT INSURANCE IRA 401K THEN UPON BENEFICIARY PASSING… FAMILY CHARITY GUARDIANS Beneficiary’s own
INHERITANCE
INHERITANCE
GIFT
GIFT
INHERITANCE GIFT INSURANCE IRA 401K THEN UPON BENEFICIARY PASSING… FAMILY CHARITY GUARDIANS Beneficiary’s own

INSURANCE IRA

401K
401K
THEN UPON BENEFICIARY PASSING… FAMILY CHARITY GUARDIANS Beneficiary’s own assets
THEN
UPON
BENEFICIARY
PASSING…
FAMILY
CHARITY
GUARDIANS
Beneficiary’s own assets

BENEFICIARY

BENEFICIARY
1 st Party PRIVATE Trust Then Medical Special upon Malpractice passing… Needs Personal Injury Trust
1 st Party PRIVATE Trust
Then
Medical
Special
upon
Malpractice
passing…
Needs
Personal
Injury
Trust
any left
Inheritances & Gifts NOT to 3 rd party SNT
Inheritances
& Gifts NOT
to 3 rd party
SNT

His/Her own assets, such as savings bonds,&

& Gifts NOT to 3 rd party SNT His/Her own assets, such as savings bonds,& only
only then: FAMILY CHARITY
only then:
FAMILY
CHARITY

GUARDIANS

COMMON ATTORNEY MISTAKES!

COMMON ATTORNEY MISTAKES!

COMMON ATTORNEY MISTAKES!

COMMON ATTORNEY MISTAKES! ®
COMMON ATTORNEY MISTAKES! ®
COMMON ATTORNEY MISTAKES! ®

®

COMMON ATTORNEY MISTAKES!

COMMON ATTORNEY MISTAKES!

COMMON ATTORNEY MISTAKES!

COMMON ATTORNEY MISTAKES!
COMMON ATTORNEY MISTAKES!
COMMON ATTORNEY MISTAKES!
COMMON ATTORNEY MISTAKES!

COMMON ATTORNEY MISTAKES!

COMMON ATTORNEY MISTAKES!
COMMON ATTORNEY MISTAKES!
 Transfer of money/property to a 1 st Party OBRA Pay Back Trust…  Represent:
 Transfer of money/property to
a 1 st Party OBRA Pay Back
Trust…
 Represent:
1.
IRS
2.
Residential
3.
Employment or “DT”
PARENT SIGNS
PARENT SIGNS
PARENT
SIGNS
56

56

WRITE IT DOWN!

Providing information,
Providing
information,

guidance &

instructions…

Extended Family Future Guardians Future Care Providers
Extended
Family
Future
Guardians
Future
Care
Providers
information, guidance & instructions… Extended Family Future Guardians Future Care Providers Future Trustees
information, guidance & instructions… Extended Family Future Guardians Future Care Providers Future Trustees
Future Trustees
Future
Trustees
You need
You need

to write it ALL down!

You need to write it ALL down! ABOUT MITCH RUBIN Guidance & Instructions For Future Guardians,
You need to write it ALL down! ABOUT MITCH RUBIN Guidance & Instructions For Future Guardians,
You need to write it ALL down! ABOUT MITCH RUBIN Guidance & Instructions For Future Guardians,
ABOUT MITCH RUBIN
ABOUT
MITCH
RUBIN
Guidance &
Guidance
&
Instructions
Instructions
For Future Guardians, Trustees, & Care Providers.
For
Future
Guardians,
Trustees,
&
Care
Providers.
it ALL down! ABOUT MITCH RUBIN Guidance & Instructions For Future Guardians, Trustees, & Care Providers.
it ALL down! ABOUT MITCH RUBIN Guidance & Instructions For Future Guardians, Trustees, & Care Providers.
WRITE IT DOWN! • history… Family medical
WRITE IT DOWN!
WRITE IT DOWN!
• history…
history…

Family medical

WRITE IT DOWN! • history… Family medical
WRITE IT DOWN! • history… Family medical

WRITE IT DOWN!

History of: – diagnoses – hosptalizations – medications – doctors – other professionals… – PAST
History of:
– diagnoses
– hosptalizations
– medications
– doctors
– other professionals…
– PAST & PRESENT!
WRITE IT DOWN!
WRITE IT DOWN!

WRITE IT DOWN!

WRITE IT DOWN!
WRITE IT DOWN! Emergency Information, including DPAs, Declarations… Short Term & Stand By Guardian

WRITE IT DOWN!

Emergency Information, including DPAs, Declarations…
Emergency
Information,
including DPAs,
Declarations…

Short Term & Stand By Guardian

WRITE IT DOWN!

WRITE IT DOWN! Wills, Trusts, Life Insurance, Powers of Attorney, SNT, funeral desires & related info…

Wills, Trusts, Life Insurance, Powers

WRITE IT DOWN! Wills, Trusts, Life Insurance, Powers of Attorney, SNT, funeral desires & related info…

of Attorney, SNT, funeral desires &

related info…
related info…
WRITE IT DOWN!
WRITE IT DOWN!
Continue the discussion through our FORUMS! You will receive an email shortly with a link

Continue the discussion through our FORUMS!

You will receive an email shortly with a link to our discussion board. The PowerPoint and recording will also be provided in this email. Email Phuong (pnguyen@autismnow.org ) if you experience any issues.

Website:

Information & Referral Call Center:

1-855-828-8476

Next Webinar:

Tuesday, September 11, 2012 from 2:00-3:00 PM, EDT Meeting, Making and Keeping Friends and Connections