If your child has been diagnosed with MSUD, Social Security may be able to help with the costs of treatment. The process may seem daunting, but it may help to know which benefits you would be able to apply for and how you can apply for them.

Which Social Security Program should I apply for?
The Social Security Administration (SSA) has two programs to help with disability benefits, Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI). SSDI is for adults who have been employed, so a child would not be eligible for these based on their own work record. However, if a parent is receiving disability or retirement benefits, the child may be eligible for certain SSDI benefits. Children of a SSDI recipient who are under 18 years of age may be eligible for benefits based off of their parent's work record, regardless of whether the child has a disability or not. This is because these benefits are provided as part of the parent's benefits to cover the cost of raising a child. With children over 18, they must have been disabled before the age of 22, and they must meet the Social Security Administration's definitions of disability. Generally, these benefits would be around 50 % of the main beneficiary's (the parent) monthly benefit amount, in addition to the parent's monthly benefits.

Supplemental Security Income (SSI) is a Social Security program intended to support low-income families whose children or parents have disabling condition. There are strict financial requirements to qualify for SSI based on income, beyond the Social Security Administration's disability criteria. Generally, if a family is earning less than $1,100 a month and has less than $3,000 in resources, they may qualify for SSI benefits. However, after the age of 18, the Social Security Administration would consider the child's own income and resources when determining benefits eligibility, rather than the parent's income and resources, even if they live in the same household.

How does the Social Security Administration determine disability?
The Social Security Administration determines disability based on both medical criteria and on an assessment of a person's capacity to work. For children with MSUD, the SSA would determine their eligibility based on the medical criteria outlined in two documents: The SSA Blue Book, and the Compassionate Allowance List.

Is MSUD listed in the Social Security Blue Book?
Social Security's general Blue Book doesn't list MSUD specifically, but the illness can certainly qualify if it meets certain conditions found under Childhood Blue Book Sections 111.06- Motor Dysfunction (Due to any neurological disorder) and 112.02 A1 (Organic Mental Disorders):

  • 111.06 requires persistent problems with motor function of two extremities. This must affect major daily activities and disrupt fine and gross movements, or gait of station.
  • 112.02 A1 requires medical documentation showing persistence of developmental arrest, delay, or regression.

Does MSUD qualify for a Compassionate Allowance?
While it's not listed in the Blue Book, the SSA considers MSUD severe enough to be included it in their Compassionate Allowance List. This means your claim evaluation process will be expedited.

Evidence of MSUD must be provided, as per the SSA's Compassionate Allowance Guidelines for MSUD ( This consists of documents showing tests and exams that led to the diagnosis of MSUD. You'll need to contact your child's physician for these documents.

Your child's diagnosis of MSUD automatically qualifies him or her as having a disabling condition. With a Compassionate Allowance, your claims process can be reduced to as little as a few weeks and you could start receiving benefits right away.

Applying for benefits based off of a parent's work history:
If you are receiving SSDI or retirement benefits, your child may be eligible for the benefits described above. To apply for these types of benefits, schedule an appointment at your local SSA office. You can also apply for these benefits online, at the SSA's website. You can find frequently asked questions, and checklists for applying for benefits as well.

Applying for SSI benefits
To apply on behalf of your child for SSI benefits, you'll need to locate your local Social Security office. You must make an appointment and apply in person. You'll need to gather special information before going to the appointment. Bring this information with you:

  • Your child's date of birth, birthplace, and Social Security number.
  • Contact information for your child's referring physician, or a specialist, who can help Social Security with the application and knows about your child's condition.
  • Contact information, patient ID numbers, and dates of treatment for all doctors, hospitals and clinics.
  • List of medicines your child takes and who prescribed them.
  • Names and dates of medical tests your child has had, and who referred you.

Don't hesitate to apply for these benefits for your child, as they can help your child get the care they need to stay healthy. Social Security can help pay for care and treatments so that you can focus on your child's health.

About the Authors
Disability Benefits Help is an independent organization that is dedicated to providing information about Social Security Disability benefits and how to qualify for them with debilitating illnesses and conditions. To learn more, please visit:


The MSUD Family Support Group is currently funding several research projects and we are proactively looking for researchers interested in developing new treatments or finding a cure for MSUD. Significant funding is necessary if we are to accomplish this goal.
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