Future Reflections Summer 2012
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.
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.
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.
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.
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.