[blindkid] SSI question

Arielle Silverman arielle71 at gmail.com
Tue Jun 25 02:55:42 UTC 2013

Wow--what troubling stories! I had heard about overpayment nightmares
happening to adults, but I didn't realize that someone could be held
liable for payments made on their behalf during childhood--or that the
system wouldn't allow the grown-up beneficiary to take over custody of
payments! What would happen in the event of a payee's death?

I definitely agree that the SSI and Medicaid are potentially helpful
resources for handling disability-related expenses, but not as general
compensation for having a blind child. I imagine when I was growing
up, if my parents had received payments to help with equipment I would
have been OK with that, but I would have been upset if my SSI payments
were just being used to meet general family expenses.
I remember when I was 16 or 17 and some of my friends started talking
about SSI, I was worried that the government was going to force me to
receive payments! I guess at that time I was so used to being required
to accept unnecessary accommodations that I just thought that would
spill over into financial benefits too.


On 6/24/13, Deborah Kent Stein <dkent5817 at att.net> wrote:
> Dear Cynthia,
> This article from the Summer 2012 issue of Future Reflections may answer
> some of your questions.
> Debbie
> Future Reflections        Summer 2012
> (back) (contents) (next)
> 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.
> (back) (contents) (next)
> ----- 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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