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Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) with Annette Hines, Esq. and Tai Venuti, MPH

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Friday, August 07 2015 12:00pm EDT

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Please join us on Friday, August 7, 2015 as we welcome two experts in the field of Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) provide an overview of these public benefits for Mito patients.  Topics to be covered in this conference call include:

  • Overview of SSI and SSDI programs;

  • The differences between SSI and SSDI;

  • Social Security’s definition of disability as it pertains to mitochondrial disease;

  • How SSDI is designed to work, eligibility criteria, and the full range of SSDI benefitts;

  • The application and appeals processes for SSI and SSDI;

  • Resources available to support SSI and SSDI applications and appeals processes;

  • Information on SSI and SSDI benefits for adult disabled children;

  • Returning to work after obtaining social security benefits (the "Ticket to Work Program");

  • Specific challenges for individuals with mitochondrial disease in applying for SSDI and how to address them; and
  • The benefits of professional representation and how to evaluate representation options.
Call Summary:
This talk will cover both Federal and State law.  No attorney-client relationship is established by the provision of any information in this podcast.

SSI for Children and Adults with Disabilities - Annette Hines, Esq.

SSI has more of a financial impact; both disability and financial status are taken into account
Disability determination process is the same for both
Slide 2
SSI is means tested - there is an income and an asset test 
SSDI is not means tested but has other eligibility depending on how much you have worked or what the parents’ eligibility might be
Social Security Administration will look at what programs a  person is eligible for in a particular order:
  1. Retirement
  2. SSDI
  3. SSI - last because program is meant to be for people who have no other option. Meant to keep disabled people off of the streets  
Applicant does not have a choice about what they want to be eligible for
Slide 3 - SSI Eligibility
  • blind, aged or disabled
  • must have limited assets; another person’s assets might be deemed to be assigned to you if you have a person who is legally obligated to take care of you (i.e. parents)
  • Parents are required to support children until age 18
  • Spouses also encounter deeming issues for income
  • Must have limited income; depending on type of income you have, may have reduction in SSI payment
  • U.S. citizen or alien status
Slide 4 
SSI payment is very limited
Some states have SSI supplemental payments; they are dependent on qualification under federal guidelines 
Amount depends on living arrangement and type of disability
SSI payment chart attached as PDF at
Slide 5
Definition of disability listed here
For children, age-appropriate milestones is the standard
Slide 6
Public Benefits: Healthcare
In approximately 40 states, Medicaid is an automatic benefit for those who are eligible for SSI payments without further application
This is very important for those who require community care - Medicaid pays for many benefits that help keep people in community and out of institutions
Covers durable medical equipment, dental treatment, co-pays, deductible, Personal care attendants, nursing, and HCBS waivers
Slide 7 - income limits
Income divided into working income and non-working income
Income is counted in the month it is received
If not spent, the following month it is again counted as a resource/asset
Slide 8
Working income is an encouragement for people to go to work
First $20 of all income disregarded
Next $65 of working income disregarded
Then, every $ reduces SSI payment by 55 cents
Always get to keep work income; depends on how much it impacts the SSI payment
Work does not affect most state supplement plans
Probably able to earn up to $1000/month without impact
Slide 9 - non-woking income
  • Many payments not considered income under SSI 
  • Case workers have POMS manual to determine what payments are excluded from income
  • Child support - has a different impact for under 18 vs. over 18.  Under 18, there is a 1/3 disregard.  Often, paying parent wants to decrease child support by amount of the SSI payment.  This argument is disfavored by the courts because it shifts burden of support from noncustodial parent to the government
  • Alimony - dollar for dollar reduction in benefits
  • Investment income, pensions and annuities result in dollar for dollar reduction in benefit; often fluctuates year to year, which can affect SSI benefit in the future
Slide 10 - Asset Limits
  • Extremely low and have not increased in decades: $2,000 for individual and $3,000 for married couple
  • Everything is included in assets, even furniture, etc.
  • College savings accounts are assets of the person who set up the plan
  • One non-luxury vehicle can be included in exemptions
  • Home is an exempt asset if it is yours
Slide 11
How to fix an asset or income problem? 
Cannot give assets away or refuse income
Social security looks back 3 years
Medicaid looks back 5 years
Social security can go back very far and find assets that would have put applicant over the limit - can ask for repayment of benefits.  
Can transfer assets and income to trust, but there will be an impact to SSI income
Slide 12
Two types of Special Needs Trusts
Third party: other people’s money
First party: Disabled person’s money
Benefit is not necessarily the income provided by SSI, but rather the fact of social security eligibility and the other programs opened through this eligibility
Slide 13
Third-party trusts work because beneficiary has no authority over disposition of assets
Slide 14
Strategy for when disabled person has assets
Slide 15
Pooled trust — can set up third-party or first-party trusts and manage them for disabled beneficiary
Slide 16
ABLE accounts - are allowed under Federal law but not all states have implemented them
Limit to amount per year; total amount allowed is $100,000; limit to one account per person
Limited uses for distribution
Still has estate recovery just like a first-party special needs trust
Allows person to create and fund themselves more easily and to control assets themselves if they are able
Slide 18
SSDI - Social Security Disability Insurance - Tai Venuti, MPH, Allsup Manager of Strategic Alliances
Slide 19 - SSDI Eligibility
Most common reason for ineligibility is lack of work credits — must be currently insured and fully insured
Slide 20 - SSDI for younger people
Slide 21 - Definition of disability
Slide 22 - 
Adult children of social security benefit recipient might be eligible under parent’s work record for SSDI
  • Cannot be doing any substantial work
  • meet disability criteria
  • Diagnosed before age 22
Slide 23 
Benefits of SSDI
  • Monthly income
  • Medical benefits under Medicare
  • Drug coverage
Slide 24
Benefits of SSDI (continued)
  • Extend COBRA benefits
  • Protected retirement benefits
  • Return to work incentives - encourages disabled to return to workforce
Slide 25
  • Protects other income benefits like LTD policies
  • Dependent benefits - would be half of entitlement for dependent 
Slides 26-27
Social security reviews list of impairments. 
For Mito, use related diseases and symptoms (listed)
Slide 28 - SSDI process
Consists of five levels in most states
Many who file get frustrated with the process and never continue with process
Slide 29 - Level 1 - Initial application
Most people get denied at this level (68%)
Slide 30 - Flowchart for sequential evaluation process for adults
RFC = residual functional capacity - how much capacity to perform previous work still exists
Age, education, work experience - older you are, less education you have, more likely you will be awarded at this level
Slide 31 - Reconsideration (level 2)
89% denied at this level
(Annette — she has more success at this level when the denial is based on misunderstanding of financial matter, such as characterization of an asset)
Slide 32 - Some states skip this level 2 reconsideration in an effort to speed up the process, including AL, AK, CO, LA, MI, MO, NH, NY, PA
Slide 33 - hearing with Administrative Law Judge
  • opportunity to submit more evidence and medical records
  • half of all claims denied at this level
  • Many applicants bring in a representative at this point in time 
Slide 34
Level 4 - Appeals Council
99% are denied
Slide 35
Level 5 - Federal District Court
Attorney required
Slide 36
Why people need help with appeals 
Slide 37
SSDI and Mitochondrial Disease
Slide 38
Getting help with SSDI - get help early
Slide 39
how much does help cost?
If no award, do not pay representative anything
Level 1 - flat rate if awarded at this stage
25% of retroactive payment if claim goes through appeals process, capped at $6,000
Also ask about out-of-pocket expenses to avoid unexpected bills
Slide 40
Difficulties in going through the SSDI process on your own (bar graph results from Allsup survey)
Slide 41
Experiences while waiting for SSDI award (bar graph results from Allsup survey)
Slide 42
Health Insurance Assistance (important to avoid lapses in coverage)
Slide 43
Questions to ask potential SSDI representatives
Especially important: do they have experience with Mitochondrial Disease and how will representative keep you up to date about your claim?
Slide 44-45
Meeting the Ticket to Work Challenge
Eligible for work support once SSDI is approved with work support
Slide 46 - Why Work?
Slide 47-49 - Ticket to Work and work incentives — try working without risking the loss of benefits
If successful, still have an extended period of eligibility
Still eligible for expedited reinstatement for up to five years after benefits stop due to earnings if benefits do cease
Also, continuation of medicare coverage and exclusion from medical continuing disability reviews so long as you have an active ticket to work
Slide 50
Provider resources that can help with securing employment
Slide 51 - Provider Description 
Employment Network — free service to beneficiaries; helps person develop an individual work plan
Career placement, job placement, ongoing employment support, benefits counseling
Slide 52 - Summary of SSDI process
Slide 53 - Tai Venuti contact information
Q: Who can help with disability paperwork at the very beginning of the process? Caller is having trouble finding someone to help at this stage.
Tai - Allsup can help with paperwork nationwide — or 1-888-841-2126
Paperwork can be very overwhelming at the beginning
Q: 17-year old daughter living with parents who have more than $2000 in the bank.  How can SSI or SSDI be awarded in this situation? 
Annette - Transition planning is important for children between 17 and 25, including eligibility for public benefits, special needs trusts, school issues, housing, guardianship, etc. 
Most of the time, looking at someone becoming eligible at age 18 because parental income is no longer included at that time.  Might want to move some resources to a Special Needs trust to avoid its impact on public benefits
Annette cannot work with people out of state because most public benefit programs are state based.  Can work with local estate planning attorney and advise on Special Needs trusts portion
How much will it cost? Depends on scope and complexity of the situation - could be $4,000 - $10,000 
Annette willing to discuss generalities of such matters with anyone through MitoAction without charge — contact her office to set up and tell scheduler not to go through usual intake process
Tai - in general, if you have a child with a diagnosis made before age 22, when parent retires or receives any type of Social Security benefits, the child may receive Social Security Disability benefits on the parents’ work record without asset limits applying.
Annette - that can be a curse, not a blessing - that instance does not have automatic Medicaid eligibility, so SSDI payment can put you over Medicaid limit. Easier to fix the asset problem than the income problem.  
Q: Is there a benefit to starting the process of applying for SSI or SSDI for a 14-year old child? Mom has assets but not income due to her child’s disability
Annette — look for other state programs that reimburse parents for staying out of the workforce and keeping child out of institutions.  Varies greatly from state to state, so finding local state disability nonprofit is important.  No benefits available until child is 18, so no sense in starting early.  
Q: IHSS (in-home support services) - Does this affect Social Security payment for an adult child? 
Annette - not sure; most will not affect Social Security payment. Look under POMS to specific rules for each state.  Should get expert in-state assistance for that.
About The Speaker: 

Annette Hines has been practicing in the areas of Special Needs, Elder Law and Estate Planning for over fifteen years. She received her JD from Howard University School of Law, her MBA from Suffolk University and her BA from the University of Vermont. Her clients include individuals and families of children with special needs, the elderly and others in the community.

Ms. Hines is the mother of two daughters, one of whom passed away from mitochondrial disease in November of 2013.  Her personal experience as the mother of a child with special needs fuels her passion for quality special needs planning and drives her special understanding and dedication to her practice. 

Prior to practicing law, she founded and directed the nonprofit home care company, Special Families-Special Care, Incorporated which created a new standard for caregiving and a greater pay scale for caregivers. After leading the company to $1.5 million in revenue and 50 employees, she merged it with Shriver Clinical Services Corporation of Natick, Massachusetts and shifted her focus to her law practice.

In addition to her membership in the Massachusetts Bar Association, she is a member of the National Academy of Elder Law Attorneys (NAELA), the National Academy of Special Needs Planners (ASNP) and the Massachusetts Association of Women Lawyers (MAWL), serving most recently as President. Recognized as a Distinguished Citizen by ARC Massachusetts and cited for public service by both the Massachusetts State Senate and House of Representatives, Ms. Hines works tirelessly on behalf of people with disabilities. Ms. Hines served as President of the Massachusetts Association of Women Lawyers for 2008-2009 and serves on the Board of Directors for a number of local non-profit organizations.

Tai Venuti has more than 20 years of health education, marketing, sales, community and public relations experience in nonprofit, government and corporate arenas. As Allsup's manager of strategic alliances, she develops and grows relationships with organizations that share the company's commitment to empowering people with disabilities to live lives as financially secure and healthy as possible. 

Ms. Venuti is a former journalist and public relations executive. She previously managed national public health campaigns for the U.S. Department of Health and Human Services. She holds a master's degree in public health from St. Louis University, a bachelor's degree in journalism from Michigan State University, and is accredited by the Public Relations Society of America.







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