Disability Benefits

Disability Benefits

If you or your child has difficulty maintaining a “typical” life due to ALD, Social Security disability benefits may be an option. Created to help people in need, both Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) provide financial assistance to those who are unable to work due to their disability. Qualifications for these programs are typically broken into two categories: Medical qualifications and technical qualifications.

Medical Qualifications for SSDI and SSI

Medically qualifying for either SSDI or SSI is exactly the same. When the Social Security Administration (SSA) evaluates applications, it will compare your diagnosis with its corresponding listing in the “Blue Book.” This medical guide lists all SSA-approved disabilities and the requirements you’ll need to qualify.

Children with ALD (referred to as “neonatal adrenoleukodystrophy”) will automatically medically qualify for disability benefits. For approval, the SSA suggests evidence of an ALD diagnosis with either test results from plasma VLCFA abnormalities, or mutations in the PEX genes. Additionally, children with ALD qualify for a Compassionate Allowance, meaning that the SSA will flag a child’s application for expedited review and approval. Your child should be approved for disability benefits in just a couple of weeks.

Adults with ALD may qualify under multiple listings — because there is no specific listing for adult ALD, applicants can qualify due to the severity of other symptoms caused by the disorder. For example, an applicant who has become blind, deaf, or experiences severe intermittent muscle spasms may qualify under Blue Book listings for those specific symptoms: Section 2.00 for special senses, or Section 1.00 for musculoskeletal disorders.

For example, an adult with ALD would be able to prove he medically qualifies for disability benefits if he is unable to “ambulate effectively” under Section 1.00. Ineffective ambulation includes:

  • Needing a wheelchair
  • Inability to walk more than a couple of blocks without a cane or walker
  • Inability to go up more than a few stairs without a handrail


The more limiting your ALD, the more likely it is to qualify for benefits. The Blue Book is available online, so you can review it with your doctor to see if your adult-onset ALD will medically qualify for disability benefits.

Technical Qualifications for Disability Benefits

The SSA evaluates more than medical information when looking over an application. Depending on age, income, and work history, different types of benefits may be available for you and your family.

If you are applying on behalf of a minor child, you’ll only be applying for SSI benefits. SSI requires no past work history, but does require your household’s income is under a specific monthly maximum to qualify. Depending on your family size and number of earners, your specific monthly income limits that qualify for disability may vary. For example: If an only child with ALD is raised at home by a single mother, she can earn no more than $3,057/month in order for her child to qualify for SSI. In contrast, if a child with ALD is raised by both parents in a home with 4 other non-disabled children (a family of 7), the monthly income limit is $5,259 instead.

If you are applying with adult-onset ALD, you may qualify for SSI or SSDI, depending on your work history. For those who have been unable to work or were diagnosed at an early age (18, 19, or 20), SSI may be the best option — this is because adults applying for SSI are evaluated on their own income, as opposed to their parent(s). For adults who were working before their ALD diagnosis, SSDI will be the best option. Qualification for these benefits depend on how much money an you have contributed to Social Security in relation to their age. The vast majority of people who have worked even part-time throughout adulthood will have paid enough taxes to qualify for SSDI. You can view how much you need to have worked online.

Applying for Social Security Benefits

Applications for SSDI can be found online. FAQs and other important information can also be found on the SSA’s website if you have any questions about the application or the process. SSDI applications can also be filed in person at your local Social Security office if you choose to speak with someone in person.

If you are applying on behalf of your child with ALD, you cannot apply online. You will need to complete your application at your closest SSA office. It is recommended that an online Child Disability Report also be filled out prior to the SSI application. This report gives information about your child’s disability and also gives the child’s doctor(s) permission to share information with the SSA. An appointment can then be made to fill out an application by calling the SSA toll-free at 1-800-772-1213.

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