[blindkid] SSI question

[Deborah Kent Stein]

Dear Cynthia,

This article from the Summer 2012 issue of Future Reflections may answer 
some of your questions.

Debbie


Future Reflections        Summer 2012

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Social Security: Benefits and Pitfalls
by Ronza Othman

>From the Editor: Ronza Othman is an attorney with the U.S. Department of 
Health and Human Services. She received a National Federation of the Blind 
Scholarship in 2006, and she serves as first vice president of the National 
Association of Blind Lawyers. She is an active member of the Illinois and 
Maryland affiliates of the NFB.

Many parents of blind children view the benefits available to their families 
through Social Security programs as a means to provide their children with 
access to the world on an equal footing with their sighted peers. 
Nonetheless, parents may unknowingly abuse the system, with the result that 
their blind children are labeled as incompetent by the Social Security 
Administration. In addition, blind adults who received benefits as children 
may ultimately be held responsible for thousands of dollars in overpayments. 
Social Security benefits may leave blind adults with little or no motivation 
to become productive members of society through gainful employment, or with 
low self-esteem and complete dependence on family members, friends, and 
social welfare programs.

>From Blind to Incompetent: A Slippery Slope
A family with a ten-year-old blind child (we'll call her Ronnie) applies for 
and is approved to receive Supplemental Security Income (SSI). Because 
Ronnie is a minor, the Social Security Administration (SSA) requires that 
her monthly benefits be sent to a representative payee. The representative 
payee is responsible for administering the monthly payment from SSA, 
completing the annual income statement paperwork, and attending the case 
evaluation sessions that take place every few years. Since Ronnie is blind 
and her blindness is permanent, she does not need to attend any of the 
reviews with the caseworker, as long as the representative payee provides 
updated medical and financial information. Ronnie's mother is appointed as 
her representative payee. Since Ronnie is very young, she is not aware that 
her family is receiving SSI payments on her behalf.

As Ronnie grows up, her mother continues to act as a representative payee. 
SSA is supposed to have an in-person review with all child beneficiaries 
when they turn seventeen to evaluate whether they remain eligible for 
benefits as adults and to assess whether a representative payee is needed. 
However, many cases fall through the cracks. In fact, in many instances, the 
SSA expects beneficiaries to request this review themselves. Ronnie's mother 
continues to receive monthly payments, to complete necessary paperwork, and 
to attend periodic reviews on behalf of her daughter. Ronnie learns that she 
is receiving SSI, but she is not involved in any of the administration of 
the money that comes to her mother every month. When she asks about it, her 
mother tells her that the money is meant to pay for Ronnie's care and 
housing, not to provide her with spending money.

Ronnie goes to college and gets a job on campus. Years later, she gets a 
full-time job and moves out on her own. One day, after she has been working 
for a few years, she is contacted by an investigator. The investigator 
informs her that she owes an overpayment of thirty thousand dollars to SSA. 
She is told that she must pay back the entire amount immediately. Ronnie 
tries to contact SSA to get information about why she owes this money. SSA 
informs her that information can only be shared with her in writing. The 
address SSA has on file belongs to Ronnie's mother. SSA will not let her 
change the mailing address on her file because she is deemed "incompetent" 
in the system.

Ronnie visits a local SSA office to get more information. No one can share 
information with her. She is told that she has a representative who is 
required to act on her behalf. She informs SSA that the overpayment should 
therefore be the responsibility of that representative. SSA informs Ronnie 
that she is responsible for the overpayment, though she is not entitled to 
information about her case unless the representative payee is present. 
Ronnie argues that she never received the money herself and that she was not 
aware it was being issued after she began to work. SSA informs her that if 
she fails to pay back the entire overpayment or set up a monthly payment 
arrangement, SSA will garnish one-third of her wages. SSA will consider 
reducing the overpayment only if Ronnie files a fraud report against her 
representative payee.

Ronnie learns that minor children who age into adulthood retain their 
beneficiary payee status unless the review at age seventeen determines that 
the beneficiary can handle his/her own affairs. Since Ronnie did not have a 
review, the computers at SSA automatically changed her status from that of 
minor child beneficiary with a representative payee (mandatory for all 
children) to adult beneficiary with a representative payee. The agency views 
adults with representative payees as incapable of handling their own affairs 
and administering their benefits themselves--essentially as incompetent.

Ultimately, Ronnie has to provide SSA with a letter from her physician 
stating that she is competent to handle her own affairs. She has to go with 
her mother to the SSA office near her mother's house when she submits the 
letter, because SSA requires that the representative payee not object to the 
beneficiary taking control over her own case. The field office assigned to 
the case is the one geographically closest to the mailing address on file, 
regardless of where the beneficiary lives. For Ronnie, this means the office 
is in a distant state.

Once Ronnie is reclassified in the system as being capable of handling her 
own affairs, she learns that the overpayment resulted from her earnings 
while she worked part-time in college. She was not involved in her SSI case, 
so she did not know about earnings limits or reporting requirements. In 
addition, though Ronnie's mother notified SSA that Ronnie was working after 
she got a full-time job, SSA continued to send out a monthly check. Ronnie's 
mother vaguely knew that Ronnie was still entitled to benefits during a 
transition period after she started working. She thought that SSA would know 
when it should stop paying benefits. However, as happens frequently, SSA did 
not stop sending monthly SSI checks until several years after Ronnie's 
mother reported Ronnie's employment. The end result was the thirty 
thousand-dollar overpayment.

In essence, because Ronnie's caseworker did not conduct a review when Ronnie 
turned seventeen, and because the SSA system automatically converts minor 
children with representatives to incompetent adults, Ronnie was deemed 
incompetent simply because of her blindness. When she tried to obtain 
information about her case and the reasons for the overpayment, SSA refused 
to share this information with her due to her status. When she tried to 
change the address to which SSA was sending mail, she was prohibited from 
doing so because she was not deemed able to handle her own affairs. When she 
tried to fight the overpayment, she was prevented from doing so for the same 
reason. She was never evaluated as to whether or not she could handle her 
affairs. She had to prove that she was capable and competent by providing a 
letter from a physician.

SSA informed Ronnie that the only way to avoid repaying the overpayment was 
to file a fraud claim against her representative payee and have that person 
prosecuted. Ronnie believed that her mother simply didn't understand the 
rules. Her mother used the monthly SSI checks to pay for Ronnie's food and 
lodging, and Ronnie couldn't allow her to be charged as a criminal. 
Ultimately, Ronnie entered into a settlement agreement with SSA wherein she 
had to pay two hundred dollars a month nearly to the end of her natural 
life. SSA can also redirect any income tax refunds to which Ronnie might be 
entitled. If Ronnie loses her job, applies for SSI in the future, or 
retires, SSA will likely take a portion of the benefit to which she would be 
entitled to cover the overpayment. Ronnie will be paying back the debt and 
suffering its consequences for years to come.

Ronnie is not a mythical Social Security beneficiary. Her story is all too 
common. Parents don't always understand the nuances of SSA requirements. 
Often they are not aware that minor children should have a review at age 
seventeen to assess whether they will continue to need a beneficiary payee 
in adulthood. Since blindness is constant and does not usually require 
medical recertification, SSA does not always insist on regular reviews. Yet 
the consequences of a lack of such reviews, in a broken system that defaults 
unreviewed beneficiaries into the category of incompetent adults, are 
long-lasting and severe. I understand them firsthand, because Ronnie's story 
is my own.

>From Blind to Dependent: An Unintended Consequence
Alex was also a minor when his family began to receive Medicaid and a 
monthly SSI check due to his blindness. Alex's father served as his 
representative payee. As an adult, Alex continues to receive benefits, 
administered by his father. Alex does not get involved in reviews, annual 
financial reporting, or anything else related to his case. However, he is 
completely dependent on his benefits. They pay for his food and part of his 
family's rent, and they provide him with spending money. Alex's father 
manages the payments and gives Alex a monthly allowance that he can use for 
fun activities.

Alex's family has also become dependent on these SSI  benefits. They have 
come to rely on the monthly checks to make ends meet. Alex's SSI checks pay 
for housing, food, clothing, medicines, and other necessities.

SSA intends that SSI benefits provided to minor children be used for their 
disability-related expenses. However, many parents view the monthly payments 
as being intended to pay for the child's necessary expenses, such as food 
and shelter. This misunderstanding is heightened by the required annual 
financial statement that breaks the yearly amount of SSI benefits received 
into categories including lodging, food, and personal supplies such as 
toiletries. Nonetheless, the real purpose of providing disabled children 
with SSI is to pay for items and equipment that they need as a direct result 
of their disabilities, such as access technology, transportation, and 
services not covered by insurance.

A parent is responsible for the financial support of his or her child, 
including the cost of housing and food. When parents use SSI payments to 
cover necessities, the money is no longer available to purchase 
disability-related services and equipment, and blind children are forced to 
go without them. Though they have food to eat and a roof over their heads, 
they may not have computer equipment, orientation training, or access to 
Braille or large print books. They become isolated and dependent on their 
parents and family members to access information and interact in the world.

Some parents believe they are entitled to compensation from the government 
because they have a blind child. This thinking is inherently damaging to the 
child, who is made to feel that his/her existence in the family warrants a 
regular apology in the form of a payoff. Recently I spoke with several 
parents, asking them why they receive SSI for their children. They made the 
following comments: "We get SSI because the government wants to reward 
parents of blind children." "My daughter gets SSI to make up for her 
blindness." "We need the money because raising kids in this country is 
expensive." "The government is paying us to put up with the blindness." I 
asked each of these parents if they would still love and take care of their 
children if the monthly checks stopped coming, and each of them emphatically 
stated that they would. Yet the message their children hear is that their 
blindness warrants compensation. Undoubtedly, this message will have a 
negative impact on the child's self-esteem and self-image.

>From Dependent to Unmotivated: A Foreseeable Result
Alex grows up to be an adult. He spends his days playing games on the 
Internet and his evenings playing on the Internet some more. He has a 
close-knit group of friends, none of whom he's ever met in person. He chats 
with them daily while they game, and they take cybervacations together.

Alex is perfectly content to live his life in the basement of his parents' 
house, as long as he has food, a computer, and the Internet. Whenever anyone 
asks him if he plans to get a job, his response is, "SSI will get me by."

Alex has fallen into the category of the complacent blind who have no 
intention of becoming contributing members of society. His monthly SSI 
checks pay for his necessities, and his family pays for the rest. Alex does 
not have high expectations for himself. He does not seek employment because 
he is more comfortable depending on those around him than depending on 
himself. He has not been exposed to mainstream society, so he is socially 
awkward. Consequently, he prefers his solitary computer-based existence.

Alex's story is not unique, either. I've known many people like Alex; many 
of them were dependent children who grew into dependent adults. They absorb 
the low expectations of their parents and family members, along with those 
imposed by society, and form low expectations of themselves. With a monthly 
SSI check as a safety net, they need not go out into the world to earn a 
living, effectively reinforcing their dependence on others and the 
government.

Alex is perfectly capable of gaining independence. He may need training, 
resources, and motivation, but he could get a job, move into a place of his 
own, and handle his own responsibilities. However, if he does so, he will 
lose his SSI benefits. Alex and his parents might find this prospect 
incredibly scary, as SSI serves as Alex's security.

>From Blindness to Competence--Wealth, Independence, and Motivation: A 
Necessity
SSI is a valuable and useful program. It has furnished many blind children 
and adults with resources they need to live in the world. But living in the 
world is not merely a matter of existing. It involves interacting with 
others, being productive, experiencing new things and places, demonstrating 
abilities rather than disabilities, and paying taxes to pay it forward to 
the next generation.

When used properly, SSI can foster competence. For example, Emma is an SSI 
beneficiary who is receiving state rehabilitation services. When she becomes 
gainfully employed, SSA may reimburse her state for the costs of the 
rehabilitation services it provided. SSA views Emma as a competent, 
productive, contributing member of society, and it considers the cost of her 
rehabilitation services as an investment in her future. Through her income 
taxes, Emma will repay all of the money that was spent on her in just a few 
years.

Ultimately, SSI can even help a beneficiary earn more than sufficient money 
to cover necessities and gain true independence. Adam is a student who 
receives SSI benefits. He used his monthly check to purchase the popular 
screen reader, JAWS, and a Braille notetaker, the BrailleNote. Adam's SSI 
payments also helped him obtain technology training, mobility instruction, 
and a reader while he was in college. Eventually Adam landed a wonderful 
job, and he is making a great deal of money. He got this job because he's a 
competent blind adult. He travels independently, he is a strong Braille 
reader and user of access technology, and he earned top grades in college. 
In essence, the items that SSI paid for helped him become the best qualified 
person for the job. Without those resources, he probably would not have 
gotten his job, a position that may make him very wealthy one day. In 
addition, these resources gave him the skills to gain true independence and 
self-reliance.

SSI can promote motivation among its beneficiaries. Laura is an SSI 
beneficiary who is searching for employment. She knows that she can't 
survive for very long on less than seven hundred dollars a month, and she is 
aware that she cannot earn more than a certain amount of money without 
losing all of her benefits. Laura accepted several part-time jobs in order 
to gain work experience and to supplement her SSI income. She stayed below 
the earnings limit while she worked these part-time jobs. Laura found a 
full-time job once she had gained sufficient experience. She will exceed the 
earnings limit, and she will lose her SSI benefits after a transition 
period. Though the job will not make her rich, she is motivated to take it. 
After all, she will be earning more than seven hundred dollars a month, and 
she will likely get promotions and raises as time passes. Laura is investing 
in her future and using SSI as a stepping-stone to achieve the future she 
wants.

In sum, SSI can be critical to and a positive influence on the futures of 
its beneficiaries. However, parents must be mindful of the pitfalls and 
consequences of receiving benefits for their children. From the beginning 
they must encourage their children to be involved in the administration of 
their benefits. They must recognize the financial consequences to the child 
once the child becomes an adult. Parents must consider the psychological 
consequences of receiving benefits.

Finally, parents must instill in their children the understanding that SSI 
is a resource, not a crutch. Failure to do so will result in a generation of 
incompetent, impoverished, unmotivated blind adults who have a sense of 
entitlement. Parents must teach their children that they are capable of 
being independent, self-motivated, productive members of society.

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----- Original Message ----- 
From: "Cynthia Davis" <cdfiets at gmail.com>
To: "(for parents of blind children) Blind Kid Mailing List" 
<blindkid at nfbnet.org>
Sent: Monday, June 24, 2013 8:24 PM
Subject: [blindkid] SSI question


> Can anyone provide insights as to why I should/should not consider signing 
> our partially sighted teen up for SSI?  We expect him to be fully 
> employable, thanks to what he learns from his incredible TVI's and 
> generous NFB mentors.
>
> Many thanks,
> Cynthia
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