If you can get your child approved for monthly SSI payments (which isn't easy), there are many ways you can make use of the benefit.
Your child’s SSI payment amount will vary depending on the state you live in and whether your child has any countable income, but the federal base rate for 2024 is $943/month. (Read Nolo's article on how much SSI pays for more information.)
Social Security requires most children’s SSI to be paid to a payee, and the payee is most often a parent. Payees have the responsibility to keep track of the child’s SSI and to spend it for the child’s benefit. Social Security tells payees to spend a child’s SSI on the child’s “current maintenance,” which includes things like food, shelter, clothing, medical care, and personal care items. First, you should use the money to make sure your child has food and shelter.
Many parents of children receiving SSI use their child's benefits to help pay for the family's food and shelter. Even if your child qualifies for Supplemental Nutrition Assistance Program (SNAP) payments, formerly known as food stamps, that amount is likely not enough to feed a child for the entire month. SNAP payment amounts vary depending on household income and on what state you live in, but, on average, the maximum SNAP allowance of $3 to $5 per day is not adequate to feed your child a healthy diet.
If your family relies on SNAP, it's likely you'll need to use some of your child’s SSI to buy healthy food for him or her.
If you haven't been able to get subsidized housing and are paying a market-rate rent or mortgage payment, then your housing costs are likely one of your largest monthly expenses. If you can't afford your housing expenses (including utilities), then you have a responsibility to use your child’s SSI to ensure that she does not become homeless.
Once the child’s immediate needs are met, you can decide to use SSI to pay for medical or dental expenses that your child might have. The vast majority of children on SSI should qualify for their state’s Medicaid program, but each state’s program is different. In any case, your child may need services, treatment, or equipment that Medicaid will not pay for, and you can use your child’s SSI to pay the cost.
Some parents of disabled children use SSI funds to pay for occupational therapy or counseling that Medicaid doesn't pay for. SSI funds may also be spent on adaptive devices (wheelchairs, specially equipped vans, computers, and so on).
Remember that your child might be legally entitled to have Medicaid pay for a particular service, even though your state’s Medicaid agency has initially denied your application for the service. Medicaid requires states to provide any medically necessary treatment to an eligible child.
If you've received a Medicaid denial for your child, don't give up. Request a Medicaid hearing on the denial, and consider consulting an attorney about the problem.
You may be considering using your child’s SSI to pay back past-due bills. For example, you might owe medical bills that accrued while your child’s disability case was pending, before she was covered by Medicaid.
Before you pay any old bills, make sure that your child’s current and reasonably foreseeable needs are being met. In general, Social Security says that a payee can consider paying old debts incurred by the child if the child will have at least two months’ of benefits saved up after the bills are paid.
Before you use your child’s SSI to pay off the child’s debts, consider whether the debts are valid and what the consequences of not paying the bills might be. In many circumstances, it may be in the child’s best interests not to pay debts. You may want to seek the advice of an attorney about the validity of the debt, the consequences of nonpayment, and the option of filing for bankruptcy.
Social Security allows payees to use SSI to pay for the child’s personal needs like clothing and recreation. If you have money left after providing for your child's basic needs and medical care, then you could spend your child’s SSI on things like a special summer camp for disabled children, enrollment in swimming lessons or ballet classes, or tutoring in math or language.
You can also set extra money aside as savings for your child. Keep in mind that your child will become ineligible for SSI if she has a savings account with more than $2,000 in it. If your child is 15 or older, you can set up a Plan for Achieving Self-Support (PASS) account for your child and create a larger savings account that will not jeopardize her eligibility for SSI.
If you waited a long time for your child to be approved for SSI, then your child might be entitled to some back pay from Social Security. If the backpay is an amount that is larger than six months of SSI benefits, then Social Security will require you to set up a separate account that it calls a “dedicated account.” You can't put any other funds in the dedicated account.
There are particular rules for using money in a dedicated account. The money must be used for the child’s benefit and for medical treatment, job skills training, or education. The money can also be spent on things like personal needs assistance, special equipment, and housing modifications, as long as the expense is related to the child’s impairment.
Some examples of allowed expenses are the costs of:
If you have questions about whether you can pay for a particular expense from your child’s dedicated account, discuss it first with Social Security.
Updated January 13, 2021
]]>Social Security will deem (attribute) parental income to the child if the child is under age 18 and either lives in the home with a natural or adoptive parent or is in the parent’s control, even though the child may be away at school. Social Security will also count stepparents' income if the stepparent lives in the same home with the child and a natural or adoptive parent.
Social Security has a complicated formula for deeming parental income to children, and the agency will re-calculate the amount to be deemed from the parent(s) to the children each month (Social Security reassesses whether a child is financially eligible for SSI on a monthly basis).
First, Social Security totals up all of both parents’ gross earned and unearned income. Social Security will not count certain kinds of income; examples of non-countable income are food stamps, welfare payments, and income tax refunds. Then, Social Security will subtract certain amounts to come up with the amount of income to be deemed from the parent(s) to the child.
Social Security deducts $457 per month for each nondisabled child in the family, first from unearned income (such as alimony), until none remains, and then from earned income (wages). (This $457 deduction amount is the difference between the federal SSI amount for individuals and the federal SSI amount for couples. For 2023, the couples' benefit rate is $1,371, minus the individual benefit rate of $914, for a deduction amount of $457 per non-disabled child.)
Next, Social Security takes a $20 deduction from the parents' unearned income, or, if there is no more unearned income, from their earned income. Then, Social Security deducts $65 from the parent's earned income and reduces the remaining total of earned income by half. Social Security then reduces the resulting combined total of earned and unearned parental income by the federal SSI benefit rate ($914) for an individual if the child lives with only one parent, or the rate for a couple ($1,371) if the child lives with both parents or one parent and a stepparent.
If there is only one disabled child in the household, Social Security deems the remaining total countable income to the one child. If there is more than one disabled child receiving SSI, Social Security divides the total countable income and deems it equally among the children.
Next Social Security turns to the child's income. To figure out how much SSI is due to a child with deemed income, Social Security performs a separate income calculation for the child. Social Security treats the parent's deemed income as unearned income to the child during its calculations.
If the child has no earned income of his/her own, Social Security simply calculates the amount of the child’s SSI benefit by taking the parent's deemed income, subtracting the $20 deduction, and then subtracting this amount from the current maximum monthly SSI amount ($914 in a state that doesn't supplement SSI). The balance is the amount of SSI the child will receive each month.
If the household receives child support on behalf of the disabled child, Social Security treats it as unearned income received by the child, but only counts two-thirds of the total monthly support as countable income. Also, Social Security only looks at child support that is actually received, so if the non-custodial parent fails to pay support, it will not have any effect on the child’s SSI benefit.
For more information, see our overview of how Social Security calculates SSI payments.
For children who are over 18, no income deeming occurs, but if the child lives with his or her parents rent-free, Social Security will assume that the child is getting free rent and board and can decrease the child's SSI benefit by one-third. For this reason, some parents charge their children rent and/or board. For more information, see our article on "in-kind income."
Updated January 10, 2023
]]>Asperger's syndrome is sometimes referred to as "high-functioning" autism.
Asperger's Syndrome (AS) is a developmental disorder and is considered by many experts to be a milder version of autism. Both Asperger's Syndrome and autism are considered subgroups of a larger category, called Pervasive Developmental Disorders (PDD) in the United States.
In Asperger's Syndrome, children who are affected by the disorder often experience social isolation and sometimes exhibit eccentric behavior. The speech of some children might sound peculiar because of abnormalities of inflection, and their talking tends to follow a repetitive pattern. Clumsiness can be found in articulation and gross motor behavior. They usually have a deep interest in one particular area, such as cars and trains, door knobs and hinges, or meteorology and astronomy, which doesn't leave much room for other areas that might be more age-appropriate for the child.
Doctors look at several factors to diagnose Asperger’s Syndrome:
Also, children who suffer from Asperger’s Syndrome may have:
In diagnosing Asperger’s Syndrome, a physician will also look at a child’s ability for social interaction with other children, speech development, and eye contact.
Asperger's can be disabling when it seriously interferes with school work, family life, and/or social relationships with other children. In fact, to be diagnosed with Asperger's or autism spectrum disorder, a child must have deficits in social communication and social interaction that cause significant impairments at home or at school. If you can show that your child's functioning in these areas is limited, your child's Asperger's will be considered a disability.
Social Security updated its disability "listings" and changed the name of listing 112.10 from Autism Spectrum Disorder and Other Pervasive Developmental Disorders to Autism Spectrum Disorder. While the listing doesn't specifically mention Asperger's Syndrome, Social Security evaluates AS under this listing.
Listing 112.10 requires that your child have problems with social interaction and verbal and nonverbal communication and have "significantly restricted, repetitive patterns of behavior, interests, or activities." (Note the updated listing no longer requires that the child have a lack of imaginative activity.)
In addition, you'll need to show Social Security how your child’s functioning at school and at home is severely limited by Asperger's. Specifically, your child must either have an extreme limitation in one of the following areas or a “marked” limitation in two of the following areas:
Note that "marked" is worse than moderate but less than extreme—you can think of it as seriously limiting.
The ability of your child's medical and school records to show the severity of your child's Asperger's Syndrome will be important to Social Security's evaluation. In particular, Social Security will give a lot of weight to your child's doctor's opinion of your child's level of functioning.
If you believe your child may be disabled due to Asperger’s Syndrome, contact your local SSA office to set up an appointment to submit an application for SSI disability benefits. You can call the SSA at (800) 772-1213.
You can also start your SSI application online, but applying online is a two-step process. First, complete the online Child Disability Report, which asks how your child's condition affects his or her ability to function. Next, an SSA representative will call you to discuss your financial eligibility for the SSI program and to help you fill out the SSI application.
For more information on disability claims, please see our topic area on disability for children.
]]>When your child is struggling with a disability and is denied disability benefits through SSI, it can be very frustrating as a parent. There are several reasons why children are denied benefits, and the reason they are denied will affect the actions that you take. Below are some of the reasons children are denied benefits.
Once you understand why your child was denied benefits, you must make a decision as to whether or not you are going to appeal the decision. Please be mindful that you need to give Social Security notice of your intention to appeal in writing. You have 60 days to do this from the day you received the denial notice, or you will lose the ability to appeal your decision. If you fail to appeal, you will need to reapply in order for your child to receive disability benefits.
When your child is denied SSI benefits, there are four steps that can be taken in order to get SSA's decision reversed. Hopefully, the first step will be successful and you will not need to further appeal the benefits decision.
For more information on each level of appeal, see our article on the four levels of Social Security appeals.
For children who are denied disability claims for developmental delays, the key area of concern for winning an appeal is the medical record. Whether the record was not properly "developed" (meaning SSA did not collect all of the needed medical records) or the records do not say what is needed (because the child did not receive treatment or visit a psychologist or psychiatrist frequently) or the records failed to show the extent of your child's impairments or limitations, it is essential that you take the time to collect the medical records that you need to support your child’s case. This may include asking your child's doctor or psychologist to write a statement about how your child's delays negatively affect his academic and social functioning.
For children, there are other records that can be used beyond medical records to prove a child’s functional limitations. These other records include:
It is important to provide your records to Social Security prior to your child's hearing in order to allow the ALJ time to review and properly consider the new evidence in your case.
To decide if your child should receive SSI benefits, the ALJ will compare your child level of functioning to teachers' expectations of your child, to others with similar limitations (such as other children in special education classes), and to other children the same age who have no limitations. For more information on this analysis, see our articles on:
]]>But there might be financial help available to you. If your child has a disability that greatly affects their ability to function, they might qualify for Supplemental Security Income (SSI), a monthly cash benefit. Here’s what you need to know to apply for and get SSI disability benefits for your child.
To qualify for disability benefits, your child will first need to meet Social Security’s non-medical eligibility requirements. Your child must fit Social Security’s definition of what a child is, and your family must meet the financial requirements of the SSI program.
SSI disability benefits for children are similar to SSI benefits for adults. But Social Security uses slightly different criteria in determining disability for a child versus an adult applying for benefits. Children are considered disabled if they have functional limitations in six specific areas, whereas adults must show that their impairment prevents them from doing work activities.
For Social Security to consider an application for SSI benefits using the determination rules for children, your child must be:
Since SSI is designed to help disabled adults and children with few financial resources, your family must meet Social Security’s income and asset limits for your child to qualify for benefits. Social Security will consider your child’s income along with the income of the other family members in your child’s household. That includes both parents and step-parents if they live with the disabled child.
If your child spends most of their time away from your home (perhaps living at school) but returns for visits, and you’re still “in charge” of the child, your income and resources must still fall below the SSI limits.
In a process called "deeming," Social Security will look at the income and resources of the qualifying parent(s) and count a certain amount of the parent's income as the income of the child. If Social Security determines that your family meets the SSI income and asset limits, your child’s application for disability will move forward in the process.
Read more about the SSI income and asset limits.
The next step in the SSI disability application process is the medical determination. Social Security must decide if your child fits the agency’s definition of disabled.
There are two ways to show that your child is medically disabled:
Social Security has a list of impairments (call the “Blue Book”) that it uses to determine medical eligibility for benefits. There’s a list for adults and another for children who apply for disability. If your child’s condition meets a childhood listing, your child will qualify for disability benefits.
For children, there are 14 different listings in the Blue Book covering a variety of impairments. Below is the list of childhood disabilities found in the Blue Book and some of the impairments included in each listing.
For your child to qualify medically for SSI disability based on the listings, you must provide medical evidence that shows your child meets every element in the listing.(Learn more about getting SSI for specific childhood conditions.)
A cornerstone of Social Security’s disability requirements for adults is that their disability prevents them from working (unless they meet a listing). For children, this requirement is generally not applicable, so Social Security looks at how your child's functional abilities are limited in six domains of functioning:
Functionally equaling the listings means that your child has either:
A "marked" impairment seriously interferes with your child's ability to function. An "extreme" impairment very seriously interferes with your child's ability to function. In both situations, the limitation may be caused by one severe condition or a combination of less severe conditions.
Learn more about how Social Security decides if your child’s condition functionally equals the listings.
To qualify for SSI benefits, your child's disability must have lasted or be expected to last at least 12 months. There are some exceptions to this rule. Children with certain conditions can qualify for “presumptive disability” (which means they’ll get immediate SSI benefits because Social Security presumes they’re likely to qualify for disability).
For example, if your child had a significantly low birth weight and you apply for SSI disability before your baby is six months old, your child should qualify for presumptive disability.
Your child will be able to continue receiving SSI benefits indefinitely if their condition continues to be disabling and they continue to be financially eligible. After children turn 18, their disability is reevaluated under the adult listings and medical-vocational rules. (Learn more about what happens when a child receiving SSI disability becomes an adult.)
You can contact your local Social Security office or call Social Security (800-772-1213) to get your child’s disability application started. You can also use the online form to begin the SSI application process for your child. But navigating the Social Security disability claims process can be a complex and time-consuming endeavor, involving multiple forms and gathering a lot of information.
It can be a daunting task, especially when you’re also caring for a disabled child. You can lighten your load by working with a lawyer or advocate who specializes in children’s SSI disability cases. An experienced disability lawyer or advocate can help you build a stronger case that will make it more likely that your child will qualify for SSI disability benefits.
]]>For a disabled child to be eligible for SSI, Social Security must find all of the following to be true:
You can get assistance applying for disability benefits for your child by talking with a field representative at your local Social Security office. Or you can call the agency at 800-772-1213 (TTY 1-800-325-0778).
But there are certain situations where getting legal help with your child’s claim is advisable. For one, if Social Security denies your child SSI benefits, you should consider contacting an experienced disability attorney or disability advocate for help in appealing the SSA's decision. In addition, there are other, often overlooked reasons to hire an attorney or advocate when you're applying for SSI disability benefits for your child.
There’s a lot of work involved in applying for SSI for a child with a disability. First, getting disability benefits for a child requires a substantial amount of evidence, including medical records and school records. Sometimes additional or specialized testing will be needed as well.
Getting this information ready can be time-consuming and overwhelming for a parent who’s already caring for a disabled child. When you hire a children’s disability attorney or advocate, it’s the firm's staff who will handle most of these tasks, so you can focus on taking care of your family and yourself.
If you’re unsure whether your child has a condition that could qualify for disability, an attorney or advocate can review the case and determine if your child is likely to be eligible for SSI. (Learn more about qualifying for disability based on your child's specific medical conditions.)
The primary job of a children’s disability lawyer is to gather evidence and help you build the strongest case you can for SSI benefits. Your representative will know how to present a child's SSI claim (which has different rules than an adult SSI claim). How your representative proceeds will depend on the type of disability your child has.
Children with significant learning disabilities, low IQs, or other disorders that the SSA categorizes as mental impairments (such as depression, autism, and ADHD) can qualify for disability. But the tests, reports, and medical opinions needed to prove that a child's mental disability meets Social Security’s standards for approval are complicated. And what you’ll need will vary depending on your child's age.
A disability lawyer will know which records Social Security will need to see based on your child's age and condition. And your lawyer (or their staff) will contact school officials and medical providers to obtain the necessary records.
The attorney will also review the records to see if they’re complete and compelling. Your disability lawyer will look for:
To measure cognitive abilities, Social Security will accept only tests that are "standardized measures of academic achievement." A disability attorney or advocate will review your child's file to determine whether any additional testing is needed to satisfy the SSA's requirements. Your lawyer might also convince Social Security to administer (and pay for) any additional tests the child needs (like IQ tests).
If there are any "bad facts" (information that harms your child’s case), a lawyer who specializes in children’s SSI cases will know how to address the information ethically and minimize the damage.
Children can receive SSI benefits for many physical disabilities. Here are just a few examples:
Each condition has specific, and usually complicated, criteria that must be met in order to qualify for disability. And Social Security will only accept certain types of medical evidence, depending on your child's condition. The legal representative you hire for your child’s claim will review the specific details of the medical evidence Social Security needs to approve the claim.
Your representative will communicate with any hospitals, doctors' offices, or other testing or treatment facilities to gather any additional records that might be needed. Then your representative will review those records and submit them to Social Security for you. Your representative can also tell you if your child needs any further testing.
Supporting opinions from your child's doctor(s) are vital to winning the claim. If your child's doctor is unwilling to provide you with a supporting statement or doesn't know how, your representative can contact the doctor to discuss the matter. Sometimes an attorney or advocate is better able to understand and address a doctor's reluctance to help a patient with a disability claim. An experienced child disability lawyer can often make a doctor more willing to help.
Getting Social Security to approve a disability claim can be a long process. Anything you can do to speed up the process means your child can get SSI benefits sooner.
Hiring a legal representative doesn't necessarily mean you'll get a faster decision in your child's SSI disability case. But a children’s disability lawyer knows how to avoid the kinds of issues that can delay your child’s claim. For instance, it’s common for Social Security to initially deny a child’s SSI disability claim because there isn’t enough evidence to prove the disability. Your attorney will understand how to apply for disability for a child—including all of the necessary evidence you’ll need to prove your child’s condition is a disability. This can increase the chance that your child's claim will be approved without having to go to a hearing, which can add many months to the claims process.
It’s not uncommon for Social Security to initially deny a child’s application for SSI disability. But an initial denial isn’t generally the end of the SSI claims process. You have the right to appeal the denial. And it’s during the appeal process that most disability claims are won (specifically, at the hearing level).
If your child’s disability claim is denied, you’ll receive a letter from Social Security that explains the reasons for the denial. The letter will also provide instructions for appeal. You’ll have 60 days (from the day you receive the letter) to file your child’s appeal.
Having a successful hearing requires all of the following:
An experienced children’s disability lawyer is familiar and comfortable with the process and can prepare you and your child for the hearing.
Having an experienced disability attorney represent your child at the appeal hearing will significantly increase your child's chances of winning an SSI claim. (A recent government study showed that disability applicants who were represented by lawyers were approved for benefits at hearings twice as often as those without.)
Getting disability benefits for your child can be difficult because the evidence needed to support a child's claim is frequently complex. An experienced legal expert can review your child's claim and advise you on how to get the best outcome possible.
And children’s disability lawyers work on contingency, so you don’t pay the attorney upfront. In fact, your child’s Social Security disability lawyer will only be paid if your child’s claim is approved. The lawyer’s fees will come from the SSI back pay your child should get once that happens.
You can find a children's disability lawyer near you using our attorney locator tool here.
Updated November 4, 2022
]]>Autism can affect both children and adults. If your child is under age 18 and has autism, and you have low income and assets, your child may be eligible for Supplemental Security Income (SSI) benefits under the Social Security Act. If you are over age 18 and have autism, you may qualify for either Social Security Disability Insurance (SSDI) benefits or SSI benefits.
There are two ways in which a child with autism can be found disabled. First, the child's autism could meet the requirements of the childhood disability listing for autism spectrum disorders (listing 112.10), found in the SSA's Listing of Impairments (discussed below). Second, the child's autism could "functionally equal" the autism disability listing because the autism causes severe or extreme limitations in functioning (see below).
The SSA accepts tests using the Cattell Infant Intelligence Scale, the Revised Standford-Binet test, and the Bayley Scales of Infant Development. For older children age 6 to age 12, the SSA will review school records. It will also review academic testing such as the Wide Range Achievement Test-Revised and the Peabody Individual Achievement Test. The SSA considers a score that is two standard deviations below the normal as evidence of a severe limitation.
There are also two ways in which an adult with autism can be found disabled. The adult could meet the requirements of the adult autism listing (listing 12.10), which has the same requirements as the children's listing. If not, an adult with autism can get a "medical-vocational allowance," described below.
The SSA will consider medical evidence such as psychological testing, mental status examinations, and intelligence testing, including the Wechsler series, the Test of Nonverbal Intelligence, the Leiter International Performance Scale-Revised, and the Peabody Picture Vocabulary Test-Third Edition.
The SSA's Listing of Impairments contains categories of medical conditions along with specific requirements that must be met before an applicant can be found disabled. The requirements for autistic spectrum disorders are the same for the adult listing and childhood listing. Both listings require medical evidence showing all of the following factors:
In addition, Social Security will look to see how much autism limits the applicant's ability to function at school or in the workplace. The applicant must either have an extreme limitation in one of the following areas or a “marked” (severe) limitation in two of the following areas:
If your child's autism does not meet the disability listing for autistic spectrum disorders, the SSA will consider all of the child's limitations. This method is similar to meeting the listing, but there are a few additional areas of functioning that are evaluated. To be found disabled, your child must show medical evidence of marked (severe) limitations in two the following areas of functioning or an extreme limitation in one area of functioning:
To determine how well your child functions within each "domain," the SSA will consider medical opinions from a variety of sources, including pediatricians, nurses, and occupational therapists. When determining whether a limitation is marked or extreme, the SSA will consider how important the restricted activities are to the child's basic functioning, how often the limitations occur, and whether the limitation occurs in all settings. For more information, read our article on how children qualify for disability benefits.
If your condition doesn't to meet the disability listing for autistic disorders, the SSA will evaluate your residual functional capacity (RFC). Your RFC is the most you can perform in a work setting. The SSA will consider various skills, including your ability to sit, stand, and walk, your ability to work with others, and your ability to concentrate on tasks. To be found disabled, you must be unable to perform any jobs given your RFC.
If your autism is severe, then you will likely have problems interacting with the public and with supervisors, and these limitations should show up in your RFC. This will reduce the number of jobs that you can perform. Due to your autism, you may also have problems focusing on work tasks for an extended length of time. If you are unable to perform work at a competitive pace, then the SSA could consider you disabled because you are prevented from performing almost all jobs.
]]>This article discusses disability benefits for children with cerebral palsy. The rules are different for adults (anyone over 18). If you need to apply for SSI or SSDI as an adult with cerebral palsy, see our article on disability benefits for adults with cerebral palsy.
Impairments caused by cerebral palsy can include stiff muscles, muscle weakness, unusual gait, difficulties chewing, talking, hearing, or seeing, and seizures. Cerebral palsy can have mild effects on movement and intelligence or it can have extremely disruptive effects on a child’s activities, resulting in the inability to walk, epilepsy, and/or intellectual disorder. CP is usually not diagnosed until the child is one or two years old.
Children who suffer serious impairments from cerebral palsy may be medically eligible for Supplemental Security Income (SSI) if the child’s cerebral palsy seriously limits major activities like walking, using his or hands effectively, or communicating. To be financially eligible for SSI, the child and his or her parents (or stepparents) cannot make over the SSI income limits or own too many assets (not counting a house).
Mild cerebral palsy will not qualify for disability benefits. The SSA sets out what’s required to get disability benefits for a child with cerebral palsy in listing 111.07. To qualify for SSI under this listing, a child with cerebral palsy must have problems with two extremities that cause severe difficulty walking, standing, balancing, getting up from a seated position, or using their arms and hands effectively.
For older children, to qualify based on their difficulty walking, standing or balancing, Social Security may look at their ability to stand for a period of time, climb stairs, and/or sustain a reasonable walking pace over a sufficient distance to be able to carry out age-appropriate activities. A child who can walk effectively with a cane will generally not qualify for SSI, but a child who needs to use both arms to operate a walker may qualify; a child must be unable to walk independently without the use of a hand-held device that requires the use of both arms. For children who are too young to be expected to walk independently, Social Security may look at their functioning in comparison to others of their age.
To qualify based on the inability to use the arms effectively, for older children, Social Security may look at the child's ability to prepare simple food and feed oneself and the ability to take care of personal hygiene. For younger children, Social Security will look at things like reaching, pushing, pulling, grasping, and fingering, and whether your child can perform these tasks in an age-appropriate manner.
Note that Social Security will no longer consider whether the child's I.Q. is less than 70 when determining whether the child will qualify for benefits under the cerebral palsy listing.
Call the SSA at 800-772-1213 to set up an appointment to submit an application for SSI through your local SSA office. After you submit all the necessary financial information to the SSA, a claims examiner and medical consultant will request your child’s medical records and consider your child’s claim to make a decision on whether your child is entitled to SSI disability benefits. It can take three to five months for the SSA to determine whether your child is eligible for disability benefits.
Knowing that babies and children diagnosed with cerebral palsy often need financial help right away, the SSA grants immediate SSI benefits to children who are likely to be found medically eligible for benefits. If your child has been diagnosed with cerebral palsy and has severe difficulty speaking, coordinating hand and arm movements, or walking without braces, your child probably qualifies for these immediate “presumptive disability” benefits. If your child is an infant at an age not expected to speak or walk, his motor and communicative development will be assessed based on what is appropriate for that age. For more information, see our article on presumptive disability benefits.
]]>Some types of epileptic seizures cause loss of consciousness and convulsions, such as generalized tonic-clonic seizures (grand mal seizures), while other seizures, such as absence seizures (petit mal seizures), focal seizures (partial seizures), and psychomotor seizures (complex partial seizures), can cause alterations of awareness (e.g., involuntary staring spells) or unusual behavior.
Children with epilepsy can be eligible for Supplemental Security Income (SSI) if their parents have low income or assets. When a child with epilepsy turns 18, if a parent is collecting Social Security retirement or Social Security disability income (SSDI) benefits, the child will become eligible for SSDI (at that point, however, the adult child would have to qualify for benefits under the SSA's adult listing for epilepsy).
The SSA details how often the child’s seizures must occur, depending on the type of seizure disorder, for them to qualify as a disability. The SSA has combined the listings for convulsive and nonconvulsive epilepsy into one listing, listing 112.02. Here is what listing 112.02 requires.
Generalized tonic-clonic seizures are also known as grand mal seizures or convulsive seizures. To meet the listing for this type of epilepsy, your child must have generalized tonic-clonic (grand mal) seizures that occur at least once a month for three consecutive months, despite taking prescribed medication for three consecutive months.
Dyscognitive seizures, which include partial seizures (a.k.a. focal seizures) and complex partial seizures (a.k.a. psychomotor seizures), and absence seizures (a.k.a. petit mal seizures) are characterized by an altered state of awareness or responsiveness. To meet the listing for this type of epilepsy, your child must have dyscognitive or absence seizures that occur at least once a weekfor three consecutive months, despite taking prescribed medication for three consecutive months.
Social Security will not consider psychogenic nonepileptic seizures and pseudoseizures under this listing. The agency will consider febrile seizures but only if seizures also occur during nonfebrile periods and a diagnosis of epilepsy has been established. Note that the listing no longer requires you to provide evidence of your child's loss of consciousness, alteration of awareness, or cognitive, communicative, or emotional problems due to the seizures.
After you file your child’s application for SSI, your claims examiner will request your child’s medical records from your treating doctor. Your child’s records need to include:
If your child has not had an EEG, the SSA may request one, especially in the case of petit mal or other nonconvulsive seizures.
To set up an appointment to submit an application for SSI (or SSDI as an adult child) through your local SSA office, call the SSA at 800-772-1213. After you submit all the necessary medical and financial information to the SSA, a claims examiner will request your medical records, review them with a medical consultant, and make a decision on whether to approve SSI for your child’s epilepsy. It may take three to six months for the SSA to determine whether your child is eligible for disability benefits.
]]>Premature infants who suffer serious impairments may be medically eligible for disability benefits through Supplemental Security Income (SSI) if they have severe functional imitations—that is, the child’s condition must seriously limit activities—that are expected to last at least one year. To be financially eligible for SSI, the child and his or her parents (or stepparents) cannot make over the SSI income limits or own too many assets (not counting a house).
It can take three to five months for the SSA to determine whether your premature baby (often called a "preemie") is eligible for disability benefits through SSI. But knowing that babies with serious difficulties often need financial help right away, the SSA grants immediate SSI benefits to children who are likely to be found medically eligible for benefits. If your baby’s birth weight was low or your baby has been diagnosed with cerebral palsy, you may qualify for these immediate “presumptive disability” benefits. See our article on presumptive disability benefits for the threshold weights to qualify for presumptive disability based for low birth weight.
If your baby was born prematurely but does not meet the requirements for low birth weight, above, and does not have cerebral palsy, you will have to wait for the SSA to make its regular disability determination on your case.
The Social Security Administration (SSA) does not have a disability listing for premature babies. However, if your child has a diagnosed injury or illness common in premature infants, such as bronchopulmonary dysplasia or retinopathy of prematurity, you can apply for benefits under that underlying disability just as an older infant or child would (see below).
But if your child is one of the many premature infants who suffers from cognitive or motor developmental delays, the SSA has an official listing to be used in assessing developmental and emotional disorders in newborns and infants. Social Security Listing 112.12, Developmental and Emotional Disorders of Newborns and Younger Infants (Birth to Age One), sets out the requirements for how severe a deficit or delay in areas of motor, cognitive/communicative, or social functioning must be to qualify for disability benefits. If your premature infant has any of the following six developmental symptoms, he or she will automatically qualify for disability benefits under this listing.
The above developmental delays or emotional disorders must be documented in your child's medical records, and, if necessary and available, an age-appropriate test. For instance, the Bayley Scales of Infant Development assesses the cognitive and motor skills of infants starting at birth. Formal testing is not always required, however – obvious delays and symptoms can be recorded by a doctor and corroborated by information you provide. For instance, in infants a few months old, a pediatric specialist should be able to discern abnormal development in imitation or production of sounds or difficulty with sucking or swallowing.
The following are common medical problems suffered by preemies that the SSA recognizes through its official listings. To qualify for disability under any of them, your child must satisfy the requirements in the specific listing.
The most frequent problems that premature infants suffer are a result of undeveloped lungs. Specifcally, many preemies develop what’s called respiratory distress syndrome (RDS), also known as hyaline membrane disease. RDS occurs when the lung tissue of premature infants collapses because of the lack of a chemical called surfactant. RDS can injury the lungs permanently, leading to bronchopulmonary dysplasia, an obstructive lung disease. You apply for disability for these types of lung problems under listing 103.02, chronic pulmonary insufficiency.
Eye development can be disrupted when a premature birth occurs, leading to abnormal blood vessel development. This is called retrolental fibroplasia, or retinopathy of prematurity, which can cause low vision or blindness. Post-labor treatment of respiratory distress syndrome with excessive oxygen can also lead to retinal damage. The required severity of vision loss can be found in listing 102.02, loss of visual acuity.
Deprivation of oxygen after birth or ear infections, to which premature infants are prone, can cause permanent hearing problems or deafness. The required severity of hearing loss can be found in listing 102.10, hearing loss.
Deprivation of oxygen at birth can also cause cerebral palsy (CP), a problem where the brain can’t adequately control motor functions (preemies are eight times more likely to be diagnosed with cerebral palsy). For information on qualifying for disability due to CP, see Nolo's article on getting disability for cerebral palsy. Other motor function problems that are not due to cerebral palsy can be found under listing 111.06, motor dysfunction due to neurological disorder.
Many premature babies suffer from intraventricular hemorrhage, bleeding inside a brain ventricle. The severity of the problem and any functional impairment it caused would be assessed under listing 111.00, neurological disorders in children.
Mental disorders in a child under one year of age are evaluated under the listing discussed above, listing 112.12, on Developmental and Emotional Disorders of Newborns and Younger Infants. The SSA does not use the following listings for children under one year:
Call the SSA at 800-772-1213 to set up an appointment to submit an application for SSI through your local SSA office. After you submit all the necessary medical and financial information to the SSA, a claims examiner and medical consultant will request your child’s medical records and consider your child’s claim to make a decision on whether your child is entitled to SSI disability benefits.
]]>Spina bifida is an impairment of the spine that develops in the womb. It is often detected before the child is born. There are three forms of spina bifida, and the severity of the impairments depends heavily on the type of spinal malformation the child has.
This is the most severe form of spina bifida and is usually what is meant when people use the term “spina bifida.” The spine of the child does not close properly and remains open along several of the sections of the spine in the middle or lower back. Through these openings, both the membrane and the spinal cord are exposed, forming a sac on the child’s back. Only in some instances does skin cover the sac. The exposure of the membrane and spinal cord leave the child prone to life-threatening infections. Newborns with spina bifida often have partial or complete paralysis of the legs, weakness in the hips, legs, or feet, abnormal legs or feet, such as a clubfoot, and hydrocephalus.
As the child ages, there will be new problems that arise due to the spine abnormality. Puberty is a time when many issues arise, as this is a period of rapid growth. There can be loss of function and orthopedic problems, including scoliosis, deformities of the foot or ankle, dislocation of the hips, and joint tightness or contractures.
This is the least severe type of spina bifida. It occurs when there is a small gap in between one or more of the bones that make up the spine. The spinal nerves are not generally affected by these gaps and therefore children generally do not show signs, symptoms, or neurological problems associated with this type of spina bifida. Most individuals experience no lasting symptoms from this form of spina bifida, and it often goes undetected.
This is a very rare form of spina bifida that occurs when the meninges, which are protective membranes around the spinal cord, pop through the space in the spinal cord. The membrane can be removed through surgery and generally causes little to no damage to the nerves in the spine.
If your child suffers significant impairment from spina bifida, he or she may be able to qualify for Supplemental Security Income (SSI) on account of disability.
In order to qualify for SSI, the child’s family must meet certain financial requirements. Once those qualifications are met, your child’s impairments will be evaluated based on medical evidence in the child's medical records. Children can qualify for benefits when they meet the requirements of one of Social Security's impairment listings or if they functionally equal the listings.
There are several ways for children with spina bifida to meet a disability listing.
Compression of spinal nerve root. For children whose spina bifida compresses the spinal nerve root, Social Security's Listing 101.04 (Disorders of the spine) may apply. The requirements of this listing will be met if your child has medical evidence that shows evidence of nerve root compression that is characterized by:
Neurological impairments affecting movement. If your child suffers from neurological impairments due to the spina bifida or associated complications, those impairments should be evaluated under Listing 111.00, which covers neurological impairments for children.
Specifically, Listing 111.08 (Meningomyelocele and related disorders) applies to spina bifida. To meet this listing, your child must have at least one of the following:
Complications from spina bifida. If your child has complications from spina bifida that have caused additional impairments, he or she may be able to meet the impairment listing for one of the complications. Some of the possible complications include:
For more information, click on the appropriate link above.
Those whose spina bifida is not severe enough to meet a listing, but still causes significant impairments due to a combination of problems, may be able to receive benefits in another way. If your child has an extreme limitation in one area of functioning, like movement, or severe limitations in more than one area, like movement, learning, and/or self-care, he or she can qualify for SSI by "functionally equaling the listings."
A child whose spina bifida causes limited use of the legs, perhaps along limited use of other body parts, depending on the part of the spine that is affected, will be extremely or severely limited in being able to move about. These physical impairments may limit your child’s ability to perform functions that others their age can perform.
In addition to physical limitations, mental limitations are often present with children with spina bifida. Learning disabilities and other developmental delays may prevent children from functioning at a level that is appropriate for children their age, and this would count as an extreme or severe limitation in a second area of functioning.
For more information, read more about functionally equaling the listings.
When children turn 18, they are no longer able to receive benefits as a child. If your child's impairments continue, they will have to be reevaluated for benefits based on the adult listings. For adults with spina bifida, there is a listing in the Social Security “Blue Book” under Listing 1.04 (Disorders of the spine). This listing is very similar to the listing found for children. If neurological impairments persist into adulthood, those impairments should be evaluated under the appropriate section in Listing 11.00 for Neurological disorders. For more information, see disabilitysecret.com's article on age 18 redeterminations.
]]>Children with SLE may be eligible for SSI (Supplemental Security Income) if their parents’ income and assets are low enough. When a child with lupus turns 18, if a parent is collecting Social Security disability income (SSDI) benefits, the child will become eligible for SSDI as well (at that point, however, the child would apply for benefits under the adult listing for lupus). The SSA details what symptoms of lupus a child must have to qualify for SSI.
This article discusses disability benefits for children with lupus. The rules are different for adults (anyone over 18); see Nolo's article on SSDI or SSI for adults with lupus.
The SSA’s listing for lupus in children is listing 114.02. There are two ways your child can satisfy the listing: by fulfilling certain medical criteria or by fulfilling certain mental criteria.
Your child’s lupus must affect two or more body systems or organs, such as the kidneys, lungs, or heart. At least one of your child’s body systems or organs must be affected to a moderate degree of severity or more. Affected organs/body systems can be:
In addition, your child must have two of the four of the following constitutional problems:
The developmental/emotiona/mental requirements vary depending on your child’s age.
Age three to eighteen. Your child must have at least two of the following:
Your child’s developmental status must be documented according to SSA’s listing 112.02B2.
Age one to three. Your toddler must have one of the following:
Your toddler’s developmental status must be documented according to SSA’s listing 112.02B1.
Birth to age one. Your baby must have at least one of the following:
Your infant’s developmental status must be documented according to SSA’s listing 112.12.
To set up an appointment to submit an application for SSI through your local SSA office, call the SSA at 800-772-1213. It will likely take three to six months for the SSA to determine whether your child is eligible for disability benefits. If your child is denied SSI, contact a disability lawyer with experience with lupus cases. If the lawyer wins your appeal, he or she may take percentage of your child’s SSI back payments. If the lawyer loses the appeal, you won’t owe anything.
]]>Owning a house, a car, furnishings, and normal personal effects does not affect eligibility for SSI or Medicaid. But other assets, including cash in the bank, will. For example, if you leave your loved one $10,000 in cash, that gift would disqualify your loved one from receiving SSI or Medicaid.
A special needs trust is a trust that holds funds for your loved one but does not impact your loved one's financial eligibility for government programs. If you have loved ones with special needs, you can use a special needs trust to leave behind money that will improve their quality of life. That is, instead of leaving property directly to your loved one, you would leave it to the special needs trust.
The money in the special needs trust is managed by a trustee, and is not considered to be part of your loved one's assets when calculating their financial eligibility for government programs like SSI and Medicaid.
Learn more about Who Can Benefit from a Special Needs Trust.
The trust ends when it is no longer needed—commonly, at the beneficiary's death or when the trust funds have all been spent.
If you're looking to set up a special needs trust, learn more about How Special Needs Trusts Work.
The trustee cannot give money directly to your loved one—that could interfere with eligibility for SSI and Medicaid. But the trustee can spend trust assets to buy a wide variety of goods and services for your loved one. Special needs trust funds are commonly used to pay for personal care attendants, vacations, home furnishings, out-of-pocket medical and dental expenses, education, recreation, vehicles, and physical rehabilitation.
Learn more about How Special Needs Trust Funds Can Be Used.
If you can't come up with a good candidate to serve as a trustee or are leaving a relatively modest sum and don't want to set up a separate special needs trust, consider a "pooled trust." These are special needs trusts run by nonprofit organizations that pool and invest funds from many families. Each trust beneficiary has a separate account, and the trustee chosen by the nonprofit spends money on behalf of each beneficiary. Pooled trusts (also called community trusts) are available in many areas of the country.
Learn more about Special Needs Pooled Trusts.
If your loved one with a disability is the only person you want to provide for after your death, then you'll probably want to put your entire estate into your special needs trust and hope it lasts as long as your loved one needs help.
Many people, however, want to leave money not just to a loved one with a disability, but also to others. Or you may have more money than you think your loved one will ever need. In those situations, you'll need to consider:
So, how should you juggle all of these factors so that you come out with the right funding for your special needs trust? The short answer is, it's almost impossible to come up with meaningful numbers without the right calculators, and expertise, at your fingertips. Consider getting help from a professional. Here are three companies that have created departments specially designed to assist in financial planning for persons with disabilities:
You can also get help from certified financial planners.
To learn more about special needs trusts, go to Nolo's Special Needs Trusts section.
Some lawyers will tell you that only an attorney can draft a special needs trust. But you can create a special needs trust yourself, with the right guidance.
Of course, there are times when you should seek an attorney's advice. For example, you must see a lawyer if you want to create a trust that will be funded with the beneficiary's own money (for example, a settlement from a personal injury lawsuit), rather than your money. Complicated and state-specific rules apply to these kinds of trusts.
The book Special Needs Trusts: Protect Your Childs Financial Future, by Kevin Urbatsch (Nolo), explains when you should seek an attorney's advice to set up a special needs trust. If you determine that you don't need a lawyer, you can use the book's forms and plain-English instructions to set up your own special needs trust.
While special needs trusts can be very helpful, they're not for everyone. You can also explore alternatives to special needs trusts, such as: