Social Security Disability Benefits and Angelman Syndrome

Angelman Syndrome (AS) is a complex genetic disorder characterized by developmental delays and neurological problems. Children with AS often require around-the-clock care for their entire lives.

Parents of children who have AS often dedicate extra time, energy, and even money to provide a high quality of life for their child. Assistive technology, supportive care, and specialty medical treatments rack up expenses quickly. Parents may even find it necessary to take time away from work to be with their child. The resulting loss of income and lack of medical insurances can be financially devastating.

If your child has been diagnosed with Angelman Syndrome, he or she may qualify for financial assistance in the form of Social Security Disability (SSD) benefits. SSD payments can be used to cover your child’s expenses—including anything from food to supportive services to medical bills.

The following article will give you a basic overview of the options available to your family and will provide you with the information needed to begin the SSD application process.

Compassionate Allowances and Angelman Syndrome

Typically, the SSD application process can take months or even years to complete. Fortunately, the SSA recognizes that individuals with severely disabling conditions may not be able to wait that long to receive disability benefits. For this reason, the SSA offers Compassionate Allowances (CAL) processing to individuals with certain disabilities.  Applicants who have been diagnosed with conditions covered by the CAL program can receive SSD benefits in as little as 10 days.

Angelman Syndrome is one of approximately 200 conditions that qualify for CAL processing.  You will not need to fill out additional paperwork or request to receive CAL processing. The SSA will evaluate your child’s claim and expedite it accordingly.

Social Security Disability Insurance and Supplemental Security Income

The SSA offers disability benefits through two separate programs—SSDI and SSI.  Each of these programs has very specific technical eligibility requirements.

SSDI stands for Social Security Disability Insurance and provides benefits to disabled workers. Eligibility for SSDI is dependent on an applicant’s employment history as well as the amount of taxes he or she has paid into the system. Children and young adults don’t often qualify for SSDI on their own record because they haven’t had the chance to work and pay into the program.

It is important to note, that if the child’s parent is qualified for SSDI or retirement benefits, the child may qualify for dependent benefits based on a parent or guardian’s earnings record. If your child is technically an adult, but was diagnosed with Angelman Syndrome before age 22, he or she is considered to be an adult child. Adult children may also qualify for a child’s dependent benefits.

SSI stands for Supplemental Security Income. SSI is a needs-based program that provides financial assistance to elderly or disabled individuals who earn very little income. Eligibility for SSI is based on financial need, not employment history. To qualify, applicants cannot exceed specific financial limitations set in place by the SSA

In the case of a child, a portion of his or her parent’s income will be “deemed” . This means that the SSA will evaluate the deemed income to determine whether or not the child meets the SSI financial eligibility requirements.  Deeming occurs for children who are under the age of 18, unmarried, and still live with a parent or guardian.  Parents’ earned income, unearned income, and financial resources will all be taken into consideration.

Income and resources  that will not be deemed includes the following:

Welfare payments

Public Income Maintenance (PIM), including  Temporary Assistance to Needy Families (TANF) and VA pension for veterans

Food stamps

Disaster assistance

Foster care payments

Tax refunds on real property (property that includes land and/or buildings)

Home grown produce used for personal consumption

The SSA also makes the following allowances for living expenses—meaning that the following will be deducted from the amount of income deemed to your child:

$365 a month for each additional child that you support.

$710 a month for a single parent or $1,066 for two parents.

It is important to note that this amount will not be subtracted for parents or children who already receive public assistance.  Once your child turns 18, SSI payments will be based on his or her own earnings record.

Medical Requirements

In addition to the previously mentioned technical requirements, your child must also meet very specific medical requirements to qualify for disability  benefits.  The requirements can be found in a publication known as the, “blue book”.  The SSA’s blue book contains listings for potentially disabling conditions as well as the specific medical criteria an applicant must meet to qualify under each condition.

The SSA has separate listings for adults and children.  The specific medical requirement that your child will have to meet is dependent on his or her age.  Your child will have to meet one or more of the following blue book listings to qualify for disability benefits.

Section 12.05—Mental Retardation (Adult)

Section 112.05 – Mental retardation (Child)

Section 110.08 B – Catastrophic Congenital Disorder (Child)

You can access these specific listings on the SSA’s website.

Preparing for the Social Security Disability Application Process

Even though your child qualifies for the Compassionate Allowances program, you will still have to provide thorough medical evidence that proves the extent of your child’s condition. Medical evidence should include records of your child’s diagnosis, treatments, response to treatments, hospitalization records, and medical test results. You should also collect statements from professional adults that interact with your child on a daily basis. This can include doctors, teachers, and therapists. These statements should provide details about your child’s limitations and abilities.

The SSA may also ask for evidence of the following:

Your child’s inability to perform age appropriate functions

IQ test results showing a marked developmental deficit, based on age

Other developmental delays and impairments in physical and mental functioning, again based on age

You should collect these documents prior to beginning the application process to prevent any delays in the processing of your child’s claim.