Poverty and Disability: Inevitable... or Avoidable?
Strategies You Can Use Now to Accumulate Wealth and Retain SSI/Medicaid
Eligibility
By Marsha Katz, The Rural Institute, University of Montana
In the Beginning There Was Medicaid…
…
And Congress said “From this time forward (or at least
until the next election) this is the means by which we will care
for our poor, our elderly, and our disabled.”
And so it was decreed.
Medicaid currently is the funder of last resort for comprehensive
health care, developmental disabilities services, mental health
services, personal assistance services, home and community based
services, and also nursing homes and institutions, among other
services.
Congress limited the number of Medicaid recipients by saying “We
shall reserve this care for only the most deserving (read “destitute”),
and so, there shall be rules.”
These rules always include little or no income, few or no resources,
and an additional assortment of rules and exceptions by state
often based on the individual’s particular category of
eligibility, which way the political winds are blowing, and from
this advocate’s perspective, a total lack of logic.
There are many paradoxes I have encountered in my 25+ years
as a benefits advocate and activist. For instance, the current
national party line for most Americans is “Don’t
count on just your Social Security Retirement benefits to carry
you through your golden years. Start setting aside additional
money now.”
That’s the spin we hear over and over, but it only serves
to frustrate us more and more if we depend on SSI and Medicaid
for survival. If you receive SSI, and/or are enrolled in Medicaid,
you are told in no uncertain terms “Thou Shalt Not Accumulate!”
Most people inside and outside the systems agree that the 40-year-old
Medicaid program needs a drastic and complete overhaul. My guess
is that the needed overhaul won’t happen anytime soon.
A slow evolution, peppered with threatened cuts and caps, is
far more likely in the current political climate than the much
needed humane revolution.
I base my pessimistic prediction on what I’ve observed
about other long standing parts of the Social Security Act that
are inequitable and not very disability friendly. For instance,
in both the SSI and SSDI programs, you’re severely penalized
if you marry; on the other hand, if you’re blind (as opposed
to having any other disability), you have much more incentive
to work; or, if you receive SSI, as opposed to SSDI, you have
much more room to work and earn money without losing your Medicaid,
unless your state has a Medicaid buy-in program. If your state
has no Medicaid buy-in program and you receive SSDI benefits,
every dollar you earn puts you farther and farther away from
Medicaid eligibility. And on and on.
While many of us are actively involved in partnering with, or
downright pushing the policy makers to reform and improve the
federal Medicaid program, the reality in the streets is that
until the change occurs, we are stuck with the rules that exist
today. Therefore, it is imperative to temporarily suspend our
judgment about the lack of logic in the rules, and commit to
learning as much as we can about those rules as they exist at
any moment, so we can maximize our own situation within the framework
of those rules.
Clearly, easier said than done. Rarely are people involved with
only one system. And every system has its own rules, acronyms,
and language. Trying to juggle these and make any sense of it
all requires both a Captain Midnight Secret Decoder Badge, and
an inordinate amount of patience and perseverance, especially
when the federal and state governments change the rules as often
as a newborn’s diapers.
In the meantime…..
Escaping the Poverty Maze
There is no sure fire cookie-cutter-one-size-fits-all approach
for accumulating wealth while still retaining SSI/Medicaid, and
not violating Medicaid rules. There are, however, strategies
that can be used now to improve your situation without risking
the loss of essential health care and other Medicaid-covered
services.
For SSI recipients, the income and resource rules and policies
will apply all over the country. However, where Medicaid is concerned,
rules can differ from state to state. Some states provide Medicaid
automatically with SSI (AL; AZ; AR; CA; CO; DE; D.C.; FL; GA;
IO; KY; LA; ME; MDF; MA; MI; MS; MT; NJ; NM; NY; NC; PA; RI;
SC; SD; TN; TX; VT; WA; WV; WI; WY); some states make you apply
separately for Medicaid, but they use the same SSI rules for
eligibility ( AK; ID; KS; NE; NV; NMI; OR; UT); and a few states
(CT; HI; IL; IN; MN; MS; NH; ND; OH; OK; VA), known in SSI policy
as “209 b states,” not only make you apply separately
for Medicaid, but they use eligibility criteria that are more
stringent than the rules for SSI.
For instance, in some states, even though SSI allows you up
to $2000 in countable resources, the state Medicaid program may
only allow you to have $1500 in countable resources. If you accumulate
over the $1500 (but less than the $2000), you won’t lose
your SSI, but you could certainly lose your Medicaid in that
state.
Earned Income
Perhaps the most obvious way to increase your monthly income
is through work, whether that be wage employment, or self-employment.
Earnings CAN have a negative impact on Medicaid and SSDI eligibility,
and will reduce SSI payments to some extent, so employing some
of the following additional strategies can ameliorate or reduce
the potential for negative consequences until the SSI/Medicaid
policies on income and resources are improved.
Note: There are also a variety of state-specific strategies
that you can use (like the Medicaid buy-in programs), so be sure
to check with advocates and BPAO experts in your state. For a
list of the BPAO resources in each state, see http://www.ssa.gov/work/ServiceProviders/BPAODirectory.html
Students and Earned Income
If you are a student you can earn up to $1410/month, up to a
total of $5670/year in 2005, before Social Security will reduce
your SSI check. This SSI work incentive, known as the Student
Earned Income Exclusion (SEIE), is available when you:
-
Are under 22
- Are regularly in school (high school, college, special
education)
Many students use the SEIE to help support their families, earn
money for college, purchase things they want or need, or even
pay for supports they might need to help them maintain their
employment.
Find out more about SEIE at http://policy.ssa.gov/poms.nsf/lnx/0500820510!opendocument
Allowable Resources
These are available to everyone on SSI and Medicaid. While there
are limits, there is still the ability to sock some money away
that won’t be counted against you. The following resources
are not counted for SSI purposes, but, again, be sure to check
with the advocates and BPAO specialists in your state to make
sure about your state’s policies on Medicaid, in case your
state imposes stricter limits on one or more of these.
-
Up to $2000 in countable resources such as cash, bonds, bank
accounts, etc.
-
Approved irrevocable funeral agreements
-
Burial plots and grave stones
-
A home you live in, plus any attached land
-
A vehicle
-
Personal possessions
-
Life insurance policy with a face value under $1500
-
Term life insurance policy (this means it can’t be cashed
in until you die)
Whenever you earn money, if you have funds left after you meet
your basic living expenses, putting that money into any of these
non-countable resources is one option available to you.
While there is no resource limit for the SSDI program, if you
also have/want Medicaid, then you will have to observe the federal
and your state Medicaid resource limits.
Note: other allowable resources like PASS plans, PESS (Property
Essential for Self Support), IDAs (Individual Development Accounts),
and “OBRA” trusts are discussed individually below.
Income from a Third Party
It’s not uncommon for people who receive SSI/Medicaid
to have family members or others who want to help them out financially.
However, if those people give us cash, or pay our rent, we are
at risk for losing or reducing our SSI/Medicaid.
On the other hand, those friends and family members CAN contribute
financially in a number of ways without causing harm to us and
our benefits. In order to prevent any harm to us, their contributions
must NOT be in cash given directly to us, and must NOT be paying
for our food and shelter. However, they CAN pay for items like
the following;
-
Phone bill
-
Cable TV bill
-
Non-Medicaid covered medical expenses
-
Over-the-counter medications and supplies
-
Vehicle/Gas, insurance, repairs for our vehicles
-
Personal hygiene and paper products, laundry and laundry product
costs
-
Home repairs
-
Renter’s or homeowner’s insurance on our possessions
-
Memberships to clubs
-
Magazine subscriptions
-
Pets and pet maintenance
-
Supports, like a house cleaner or a job coach
Dedicated Account
On occasion, a group of people or a whole community desire to
help someone by collecting donations to buy something substantial
such as a lift-equipped van. In order for those funds to not
be counted against us, they should be placed in a bank or credit
union, in a “dedicated account.” The dedicated account
is set up to collect funds that can only be used for a specified
purpose (not related to food and shelter). Further, the account
should be set up so the funds in the account can be accessed
only by a third person (or two people jointly) who would then
write a check (or get a cashiers check) payable to the vendor
of the item to be purchased.
PASS Plans
A PASS (Plan for Achieving Self Support) is an SSI work incentive
that allows someone to create an extra pot of money for a limited
amount of time to use for obtaining a job, starting a business,
or in the case of Supported Employment, maintaining a job. This
extra pot of money is created by setting aside income and/or
resources you have that are considered “countable” by
SSI. When SSI counts that income or resources, it results in
a lower SSI check for you, or you are told that you are simply
not financially eligible for SSI at all.
If the countable income/resources are set aside in an approved
PASS, SSI pretends those funds don’t exist at all when
calculating how much SSI you are due. For example, if you receive
a monthly SSDI check of $650 you are not financially eligible
(in 2005) for SSI in most states. However, if you put $630/month
of that $650 into a PASS to buy a car that gets you to and from
your job, you will;
-
Be financially eligible for a $579 SSI check/month (in 2005)
(plus any state supplement your state provides in addition to
the federal SSI amount)
-
Have Medicaid in most states, and
-
Generate $7560/year ($630/mo x 12 months = $7560/year) to pay
for your car or the other products and services needed to help
you reach your employment goal
Thus, using a PASS can help you acquire a vehicle, equipment
needed to get a job or serve as start-up capital for a business.
It can also be a way to fund some extended job coaching for your
supported employment job, especially if you are on a waiting
list for services in your state.
And, finally, in some cases, a PASS can allow an SSDI-only recipient
to become eligible for SSI, and in most cases, Medicaid. During
the PASS, if you use up the last month of your 36-month Extended
Period of Eligibility (EPE), you can actually be cut off of SSDI,
yet retain your SSI and Medicaid after the PASS is over. In fact,
the loss of SSDI can actually be listed as a step in your PASS.
If you are one of the people who can make this strategy work,
you not only end up on SSI and Medicaid, but you can take advantage
of SSI’s 1619 (a) & (b) provisions (explained below).
For more information on PASS see http://www.ssa.gov/work/ResourcesToolkit/redbook.html
PESS (Property Essential for Self Support)
If you start your own business, the resources you accumulate
in that business are not counted for SSI purposes. Of course,
your “net income” will be counted, but the money
you put back into the business from your gross proceeds will
NOT be counted. Over time you can build a good sized business
this way. At some point, you could even choose to sell or “cash
out” your business and use the proceeds to buy your own
home, which also would not be counted as a resource for SSI purposes.
In a business, you may also have a separate business account
that can accumulate cash for current and future business expenses,
both the known, and the unexpected. This business account will
not be counted as a resource.
Some of us may own an additional home or property that we do
not live in. In most cases, this additional home/property would
be worth enough that it would make us completely ineligible financially
for SSI. However, if you rent the home or land, and it provides
you with some income, SSI will count that income as “unearned
income,” but will not count the home/land as a resource.
For more information on PESS see http://www.ssa.gov/work/ResourcesToolkit/redbook.html
Incorporating Your Business
While this avenue isn’t open to everyone (because you
need to have the right combination of benefits and earnings for
it to be of benefit to you), it’s a great opportunity for
some small business owners who receive SSDI benefits.
Currently, SSDI recipients aren’t automatically eligible
for Medicaid, although most of them receive Medicare. While Medicare
covers a number of things, it doesn’t typically cover all
prescription costs, or mental health services, developmental
disability services, personal assistance services, or durable
medical equipment costs, etc. If you depend on these items, it
becomes critical to become eligible for, or protect your eligibility
for Medicaid.
If you live in a Medicaid buy-in state, you can own your own
business, have more money to spend monthly, and get Medicaid
by paying an affordable monthly premium. If you DON’T live
in a Medicaid buy-in state, you are likely struggling with a
costly monthly “spend down” in order to retain your
Medicaid eligibility, and you are probably not seeing much increased
income as a result of all your work.
If your business is potentially profitable enough that your
average monthly NET earnings currently do exceed or will consistently
exceed the SGA level ($830/month in 2005) in the future, you
are at risk of losing your SSDI, and any Medicaid for which you
are currently eligible. However, by incorporating your business,
you can prevent this loss of benefits.
For instance, as you incorporate, you might set up yourself
and a trusted friend or family member or two as the corporation’s
board of directors. Then, once incorporated, the corporation
could pay for your business-related expenses like business-related
meals, transportation, private health insurance, professional
conferences and trainings, and much more.
At the end of the year the board of directors meets at its annual
meeting, and if the incorporated business has accrued a profit,
the board can decree a “dividend.” If you are struggling
with Medicaid, the dividend will be considered income in the
month you receive it. BUT, any dividend will NOT be counted as
earnings for SGA purposes, thus permitting you to have additional
money without fear of losing your SSDI benefits for having earnings
at the SGA level.
IDAs (Individual Development Accounts)
In 1999, legislation called “Assets for Independence” created
the potential for states and housing organizations to allow TANF
(Temporary Assistance for Needy Families, formerly known as ADC/AFDC)
recipients and some people subsidized by HUD to save more money
than usually allowed. Those funds must usually be saved for a
minimum amount of time, and then are matched by the state TANF
program, or Tribal TANF program, or the housing organization.
The amount of match may be one dollar for every dollar saved,
or may be as high as $7 for every dollar saved.
Typically, there is a maximum amount of savings that will be
matched. The savings and match money can then be used for one
of three outcomes. You can either use the money for an education,
or to start your own business, or to purchase your own home.
For more information, see http://www.wid.org/publications/#ida
1619 (a) & (b)
Recipients of SSI can utilize the SSI work incentives known
as 1619 (a) and (b) in order to work and increase their monthly
and yearly income without fear of losing Medicaid. Simply put,
1619 (a) allows SSI recipients to earn over the monthly SGA (Substantial
Gainful Activity) amount with no threat to SSI eligibility. (In
2005 the SGA amount is $830/month).
1619 (a) is one of the advantages SSI recipients have that SSDI
recipients don’t. If an SSDI recipient earns over SGA for
enough months, he or she will be cut off the SSDI program because
Social Security will consider them no longer eligible due to
the amount and duration of their earnings.
This is not the case for SSI. Although the person’s SSI
check will be reduced, maybe even to $0, based on the amount
of their countable earnings, they are still considered an SSI
person who remains SSI-eligible.
As you engage in work, and take advantage of 1619 (a), you will
have more money each month, both for your typical survival expenses,
and for things you want and can’t afford on only SSI.
You can also save this money, but remember you can accumulate
only up to $2000 in countable resources. Keep in mind, though,
that you can also choose to change income that SSI counts into
non-countable resources by putting some or all of your earnings
into resources such as;
-
A house you live in
-
A vehicle
-
An approved pre-paid irrevocable burial fund
-
A business you are starting
-
Assistive Technology
-
Medical expenses not covered by Medicaid/Medicare/other insurance
you have
-
A PASS plan
1619 (b) is a little different, but the results are similar
to those of 1619 (a). In essence, 1619 (b) allows SSI recipients
to earn more money and not lose Medicaid. With 1619 (b), you
can earn as much money as it takes to reduce your SSI check to
$0 ($1243/month or more), and then some! In fact, you can earn
up to a “threshold” specific to your state (ranging
from $14,916 to $44,550 in 2005, depending on your state), or,
in some cases, a “threshold” amount that is set just
for you.
If you use more than the average amount of Medicaid used in
your state, you can earn that much more and not lose your Medicaid.
To check the threshold amount in your state, and the average
Medicaid for your state, go to http://policy.ssa.gov/poms.nsf/lnx/0502302200!opendocument
To see the worksheet for figuring your own individual threshold,
go to http://policy.ssa.gov/poms.nsf/lnx/0502302300!opendocument
Once again, remember that these increased earnings can be turned
into non-countable resources like the ones listed above, as well
as be used to purchased products and services you desire
For more information on 1619 (a) & (b) see http://www.ssa.gov/work/ResourcesToolkit/redbook.html
OBRA ’93 Trusts
The Omnibus Budget Reconciliation Act of 1993 (OBRA ’93)
created the potential for people under 65 who are SSI and Medicaid
eligible to accumulate some wealth that can be used to enhance
your quality of life without jeopardizing your SSI and Medicaid
benefits.
In essence, OBRA ’93 allows a parent, grandparent, guardian,
or court to create a trust for you using your assets (perhaps
a lump sum of money you may receive, often unexpectedly. This
lump sum might come from an inheritance, a medical malpractice
lawsuit/settlement, a Fair Housing lawsuit/settlement, or even
winning the lottery.) A lawyer who knows about these kinds of
trusts will need to write the trust document for you, and then
arrange for the court to approve it.
By law, OBRA ’93 trusts do not jeopardize your SSI and/or
Medicaid eligibility, or your SSI check amounts…as long
as you abide by several mandatory criteria in constructing an
OBRA ’93 trust.
The criteria include that the trust:
-
Can’t be used for food and shelter (but it can be used
for a wide range of “amenities”)
-
Must be irrevocable (meaning you can’t undo it)
-
Can’t be changed once it’s written
-
Will use any funds remaining at your death to help repay Medicaid
in your state for services provided during your lifetime *(see
exception below), which is why you may also hear these trusts
referred to as “Payback Trusts.”
*Exception; If your OBRA ’93 trust is managed by a private,
non-profit organization, typically in a “pooled trust” arrangement,
any funds remaining in the trust when you die can be retained
by the non-profit. The non-profit organization can then use these
funds to provide amenities for people who have no “quality
of life” resources beyond their benefits. It is perfectly
acceptable for all funds in your OBRA ’93 trust to be spent
before you die, but if any funds do happen to be left over at
your death, they can be used to help other people in need if
they are retained by a non-profit organization that has been
managing your trust. In this “pooled trust” arrangement,
the funds of each person are kept in a separate account, but
the funds are invested collectively.
OBRA ’93 trusts, like the estate planning trusts that
follow, can be used to pay for “quality of life” items
or “amenities” like:
-
Vacations/trips
-
A Vehicle and vehicle maintenance expenses
-
Memberships and subscriptions
-
Education, conferences, training
-
Medical/mental health/alternative medical expenses not covered
by Medicaid/Medicare
-
Pets and pet maintenance
-
Household items, furniture, linens, computer, audio-visual equipment
-
Gifts for family and friends on holidays, and special occasions
-
Telephone/cell phone/cable TV
-
Haircuts, newspapers, movies, etc
-
Supports you need and want, for instance a house cleaner, or
a job coach
While funds paid out by an OBRA ’93 trust don’t
put cash into your hands, they do allow things that you want,
but can’t otherwise afford to be purchased for you.
For more information on OBRA trusts, see
http://www.thearc.org/policies/pooledtrust.doc
http://www.fpanet.org/journal/articles/2001_Issues/jfp0801-art9.cfm
Family Estate Planning
There is probably no question asked more frequently by the parents
of a person with a significant disability than “What will
happen to my son or daughter when I’m no longer around?” One
of the practical strategies parents can utilize to assure some
quality of life for their son or daughter without interfering
with SSI/Medicaid eligibility is to establish a carefully crafted
trust. These trusts are often known by names such as “amenities
trusts,” “spendthrift discretionary trusts” and
even “special needs trusts.”
Whatever the name, this kind of carefully crafted trusts typically:
-
Is set up by a parent’s (or other relative’s) will
-
Contains language that prohibits use of trust funds for basic
food and shelter costs
-
May contain a provision for what happens to any funds left after
the beneficiary dies
-
Contains a provision that gives the trustee total discretion
for any making expenditures that aren’t specifically prohibited
-
Contains a provision that renders the trust null and void should
government regulations change to the person’s/trust’s
detriment
-
Specify any particular expenditures that are desired by the parent(s)
(or other family member creating the trust). Examples might include
the trust paying for a yearly trip to visit a brother or sister
who lives out of state; regular visits by a social worker; a
vehicle to transport the person wherever he/she desires, employment
or other supports, etc.
As with the OBRA ’93 trusts, these family estate planning
trusts need to be written by attorneys who know and understand
Medicaid law. The attorneys who are most likely to have this
expertise will be attorneys who practice elder law and those
who work with disability organizations like Arcs and Centers
for Independent Living. There are references at the end of this
article that will get you started in the right direction legally.
Conclusion
All of the above strategies allow persons with disabilities
eligible for or receiving SSI and/or Medicaid to accumulate either
income or resources/assets within the framework of SSI/Medicaid
rules so Medicaid is neither threatened nor lost.
Every person on benefits can’t utilize every single one
of these strategies, but everyone can utilize at least one, and
hopefully more. While these are no substitute for the long overdue
and desperately needed legislative and policy changes, they are
tools available now to assist persons with disabilities to at
least improve the quality of their lives, if not to escape the
poverty maze altogether.
For More Information on Trusts see;
Davis, S., Ed. (2003), A Family Handbook on Future Planning.
Available from: http://www.thearc.org
Etmanski, A. (2000), A Good Life
for You and Your Relative with a Disability.
Available from: http://www.agoodlife.org/
Welber, Joel S., Use of Trusts to Compliment Essential Governmental
Benefits in Residential Life Care Planning, The, Michigan Bar
Journal, p 402, May, 1996.
Welber, Joel S., Special Considerations for Special People--Estate
Planning for Families with a Developmentally Disabled Child,
Michigan Bar Journal, p 1163, December, 1984.
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