The National Advocate for People with Down Syndrome Since 1979

National Down Syndrome Society
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New York New York 10012


What are disability benefits?

Social Security disability benefits are run by the Social Security Administration (SSA). They are benefits for people who have lost the ability to work or have never been able due to a disability, and are available for people age 0 to 65 and over. Disability benefits can be funded by federal taxes that are taken out of everyone’s pay checks, or could be funded by the federal government (funding depends on which benefit someone is receiving).

There are two types of benefits:

  • SSDI-Social Security Disability Insurance
  • SSI-Supplemental Security Income

What is Social Security Disability Insurance?

SSDI is the first of two forms of disability benefits. To apply for SSDI benefits, an applicant must have worked throughout his or her lives. The amount of work needed really varies depending on the age of the applicant, but all applicants for SSDI benefits are over the age 18.

For an adult applying for SSDI benefits, the rule of thumb is that an adult must have worked for any 5 of the past 10 years. Not working consecutively or for a full year is necessary to qualify. The SSA understands that applicants who are 18 will not have worked for as long as those who are 60.

Additionally, to be eligible for SSDI benefits, an applicant must have paid FICA taxes. This is the system that funds the SSDI system. To receive SSDI benefits, an applicant must have p aid into the system. If an applicant worked as a babysitter or was paid under the table, he or she will not qualify for SSDI benefits.

How to Qualify for SSDI

So how much “counts” as working according to the SSA? It’s not a set hourly amount. The SSA uses a term called “work credits” to evaluate how much an applicant has worked. Work credits are an amount of money earned. To get one work credit, an applicant will need to have earned $1,220 within a one-year period. Less work credits will be needed the younger the applicant is.

There is a maximum of four work credits that can be earned in one year, so an applicant cannot make a high income for a month and have his or her lifetime work credits set.

In addition to having work credits, an applicant will need to have a recent work history. Even with enough work credits, an applicant must have earned a portion of them within the past 10 years. If a working mom took time off to spend with her family and became disabled 8 years later, she would be disqualified for SSDI benefits, even though she has plenty of work credits.

Finally, an SSDI applicant must not currently be working. If an applicant is working part-time due to a disability but still earning a moderately high income, he or she will not be able to qualify for disability benefits in most instances. Work ability aside, an applicant cannot earn more than $1090 per month in 2015 to qualify for SSDI benefits

What is Supplemental Security Income?

Supplemental Security Income, or SSI, is a resource for adults who are low-income and have a limited amount of resources and who typically have not worked throughout their lives. These are often people who were born with a disability and due to this, have not had a job for most of their lives. People with Down syndrome may potentially qualify for both SSDI and SSI, but an adult with Down syndrome who hasn’t worked would be most likely to be eligible for SSI.

Children can qualify for SSI too.

No work history needed. Even if someone has worked at times in their lives, if they cannot qualify for SSDI due to not having worked recently, then can apply for SSI.

How to Qualify for SSI

SSI is a financial resource for people in dire need. Because of this, SSI applicants have strict financial limitations. An adult applying for SSI will not qualify unless he or she owns less than $2000 in assets. If an adult SSI applicant is married, the limitation is boosted less than $3000 as a couple.  

The SSA will consider not every item an applicant owns as an asset. The SSA will exclude one car regardless of value and a primary living residence from the asset limitation rule. Other assets can be excluded like personal affects, wedding rings, engagement ring

Assets are defined by the SSA as stocks, cash, bonds, or life insurance policies. Other valuable items include a second car or second home.

Much like SSDI applicants, SSI applicants cannot be working. The monthly income limit for applying for SSI is $733 a month or $1,100 as a couple

SSI For Children

Children can qualify for SSI benefits as well. The SSA considers anyone with a disability a child if he or she is under the age of 18. Children also have to be unmarried to qualify for disability benefits.

The $2000 SSI asset limitation does not apply for the household of children, as the SSA understands that many households with children with disabilities have a lot of responsibility and need for higher assets.

The SSA has a rough outline on its website, but the maximum monthly income limit for one parent with one child with Down syndrome is $3009 per month, or 36,000 per year. This will only increase if the parent is married or has other children that do not have disabilities.

The monthly limit per household will vary depending on the state in which an applicant lives, because some states will have additional income discounts and benefits for children applying for SSI.

The maximum monthly benefit for a child is $733. Most states will supplement this with an additional payment. The only states that do not have supplemental income for children are Arizona, North Dakota, Mississippi, and West Virginia

How does the SSA evaluate people with disabilities?

The primary resource the SSA uses to evaluate disabilities the blue book. The blue book is a medical guide that the SSA uses to determine whether or not a disability is severe enough to warrant SSD benefits.

There are two ways to qualify from the blue book: meeting a listing or meeting symptoms. Hundreds of disabilities are listed in the blue book, with different ways to qualify for each. If an applicant is diagnosed with a disability that is listed in the blue book, and has the symptoms listed for that disability, the applicant can potentially qualify for disability benefits.

If someone has a disability but cannot meet the listing for their disability, or worse, the disability isn’t even in the blue book, he or she can still receive benefits. The applicant then needs to show that his or her symptoms experienced from the disability equal other listings. Some symptoms come with rare disorders that are not listed, but they can cause heart problems, breathing difficulties, etc. If an applicant can show that your disability meets these other disorders due to symptoms, he or she can qualify for benefits via the blue book.

Finally, even if an applicant’s symptoms do not match anything else in the blue book, and an applicant’s diagnosis is not listed in the blue book, he or she can still qualify. This is done by doing an RFC, or a residual functional capacity assessment. The SSA will send a disability examiner over, he’ll have a questionnaire that asks things like how long can you sit, stand, etc., and judge whether or not you’re disabled.

Qualifying with Down Syndrome

Qualifying for disability benefits can be a real hassle. Fortunately, Down syndrome is in all honesty easy medically qualify for benefits for 98% of people with the condition.

Down syndrome is listed as a full-body disability in the blue book for both children and adults, and Trisomy 21 and Translocation automatically qualify medically.

For the 1-2% of people with Mosaic Down syndrome, this does not mean that hope is lost! People with Mosaic Down syndrome can qualify as well, but they are not automatically approved as people with non-mosaic Down syndrome are.

Documents Needed to Qualify

The primary document required by the SSA is a chromosomal analysis. A karyotype analysis from an applicant’s doctor’s office will be the primary piece of information needed by the SSA to qualify for disability benefits. Anyone can request that his or her doctor release the information to the SSA or pay minute (sometimes no) fees to retrieve it yourself and send it in with your application.

Let’s say an applicant doesn’t have the chromosomal analysis on hand. An applicant can also qualify with a doctor’s statement saying that the person applying for disability benefits has all of the features of Down syndrome, both physical and potentially developmentally, plus the applicant had the chromosomal analysis done in the past. This doctor’s testimony will also get someone with Down syndrome benefits.

Qualifying with Mosaic Down Syndrome

People with Mosaic Down syndrome are able to qualify by finding any health problems they experience in the blue book.

Because some people with mosaic are not as physically or as developmentally limited as those with trisomy 21 or translocation, they must show their disability with physical or developmental limitations. Some common ways to qualify with mosaic are heart conditions, thyroid and weight issues, sleeping problems and sleep apnea, hearing issues, and developmental issues.

If you’ve met one person with Down syndrome, you’ve met one person with Down syndrome. Because everyone with Down syndrome is completely different, applying for disability benefits with Mosaic Down syndrome will really depend on the person applying.

How to Apply for Benefits

The SSA’s website should be the first stop for anyone looking to get disability benefits. They have packets of information on the medical records you’ll need if you’re applying for yourself, on behalf of an adult, or on behalf of your child.

Someone with Down syndrome applying for SSDI benefits can actually complete the entire application online. An applicant with Down syndrome looking for SSI benefits, or parents applying on behalf of their child with Down syndrome will need to schedule an appointment at the SSA’s office.

Occasionally, the SSA will conduct the entire interview over the phone if an applicant for some reason cannot get into one of the SSA’s hundred of field offices, but this is not as common.

Waiting for Benefits

The Social Security Administration claims that SSDI benefits will typically take 3-6 months to process, although some claims can take a year or more. For someone with Down syndrome applying for SSDI benefits, there is a possibility of being selected for a process called a “Quick Disability Determination.” There is no special way to apply for Quick Disability Determination, but when the SSA looks at claims, computers initially scan all applications. Occasionally it will pick disabilities that it deems to be likely to be disabled, and applicants will begin receiving benefits as soon as 20 days after applying. Down syndrome is a one of the few disabilities that can often potentially be selected by the SSA’s computers as disabling. If not, it is sent to the Disability Determination Services, with the majority of other applications.

SSI applicants with Down syndrome, both children and adults, automatically begin receiving benefits. This is because SSI claimants are eligible for Presumptive Disability Benefits. This means that when the SSA receives the application, they assume the person is disabled and begins payments before fully processing the claim. These presumptive benefits will last for 6 months. If the claim has not been processed by the end of the six months, they will discontinue. Applicants are also eligible for Medicaid coverage once they receive presumptive disability benefits.

An SSI applicant will not qualify for Presumptive Disability Benefits if his or her household income is too high. If an applicant does qualify for Presumptive Disability benefits but the claim is denied due to medical reasons, he or she will not need to pay back the benefits. This is only relevant for people with Mosaic Down syndrome, as people with Trisomy 21 or Translocation automatically qualify medically.

Back Pay

Some applicants can often wait months or more to hear a decision on whether or not they’re approved. Fortunately, back pay is an option for Social Security applicants. Back pay is a lump sum given to Social Security applicants to cover the time after they applied—time when they should have been receiving benefits but the claim was still being processed.

When applying for SSI benefits, people with Down syndrome will receive presumptive disability benefits, so back pay will not be an option.

For SSDI applicants, back pay is granted for the time in which an applicant has to wait for his benefits to be approved after sending in the application. The SSA does not include the first 5 months after applying in the back pay lump sum, because they believe 5 months or less to be an adequate processing time. If a person with Down syndrome applies for SSDI benefits and isn’t approved within 5 months, he or she would be eligible for a lump sum equal to his/her monthly benefits for all the time that he/she was forced to wait for benefits. Additionally, the SSA will pay for back pay up until the date at which the applicant was found disabled for up to 12 months before applying. Because people with Down syndrome are considered disabled at birth, they are potentially eligible for up to an additional 12 months of back pay.

Denied Benefits?

With Down syndrome, it is less likely to be denied benefits than other applicants, because the disability almost always medically qualifies. 70% of applicants for all disabilities are denied benefits at the first application. If an applicant submitted a chromosomal analysis and still got denied, this can mean one of three things:

1. An SSDI applicant’s work credits were not high enough to qualify

2. An adult’s income was too high for SSI, or parents’ income was too high for their child to qualify

3. There was a typo. It sounds sad but more than 20% of denied applicants got denied because there was something wrong on the application. This could be as simple as writing down the wrong address for the hospital that holds the applicant’s records.

The SSA will send a letter of denial to applicants that lists the reason why an application was rejected.

The SSA does have an appeals process available for claimants who are denied. The first step for most applicants will be to file for reconsideration. In 40 of the 50 states, any denied applicant can fill out a form on the SSA’s website saying to look at the claim again.

Finally, there is an option for an ALJ  (Administrative Law Judge) hearing. This is a hearing in front of a judge. This would really only happen for people with Mosaic Down syndrome, because the other forms would either qualify or not be financially eligible.  

An applicant has the option to hire an attorney at any stage of the application process. This is usually not needed for people with Down syndrome unless gathering medical records is too challenging, or unless someone with Mosaic Down syndrome is denied for medical reasons.

How to Spend Benefits: Adults

An adult receiving SSDI or SSI benefits does not have limitations when choosing what to spend money on.

Most people spend money on rent, food, and leisure items. Other items may be purchasing a car or other household needs.

How to Spend Benefits: Children

If your child with Down syndrome is approved for SSI benefits and you are in control of the child’s funds, there are very strict limitations on how you can spend the money.

You must keep a separate bank account for the benefits you receive from the SSA. The only transactions from this dedicated account are for the child.

You cannot spend the money on rent, food, automobile upkeep, bills, etc., unless the child is in danger of starvation or becoming homeless.

Some parents ask if they can spend the money on a cell phone to keep in contact with their child. Expenses like these must be requested through the SSA first. If it’s a questionable purchase, it is always safe to ask the SSA first.

SSI benefits for children were designed to only be used on medical and therapeutic treatments for the child. For children with Down syndrome, some of the most common uses of these funds are for different developmental therapies, such as physical therapy, speech therapy, or occupational therapy to prepare the child for adulthood.

Other ways the SSA allows a parent to spend funds are to hire assistance in childcare, or modify the home to better suit the child. A parent of someone with Down syndrome could hire a sitter to assist the child with day-to-day activities, or modify the house to make it more accessible for the child.

Ticket to Work Program

The Ticket to Work Program is a moderately new program the SSA offers for people receiving disability benefits who are interested in potentially joining the workforce. The Ticket to work program was created in 2001 and was designed to get SSDI or SSI beneficiaries between the ages of 18 and 64 who are interested in joining the work force and having a successful career. Participation is completely voluntary. SSD caseworker can verify eligibility, or can call ticket to work helpline at 1-866-968-7842 

The Ticket to Work program sets recipients up with Employment network or Vocational rehabilitation agency.

EN are public organizations that help with career counseling and assistance with job placement, including discussing how your disability benefits  will be affected by working. VR are for people who need significant and costly services, such as intensive training, education, rehabilitation, surgery such as prosthetics, or motorized scooters and other mobility devices.

To continue with the Ticket to Work Program, a person with Down syndrome must set yearly goals: Either working toward a specific earning level, or completing certain training requirements. The Ticket to Work Program is risk-free. This is because Ticket to Work Program recipients can keep their benefits for a full year after they begin working, regardless of how much they’re making at work.

People with Down syndrome are perfect candidates for the Ticket to Work program. To see if a beneficiary is eligible, he or she will simply need to speak with the caseworker that handles his or her case.

NDSS thanks Deanna Power of the the Disability Help Center for providing content for this article.  

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