Kids With Heart NACHD


Congenital Heart Defects and Social Security Disability Benefits

October 20, 2014

The following article was written as a resource for Kids With Heart members, and others with Congenital Heart Defects, by Lisa Giorgetti, a community liason for Social Security Disability Help.

By: Lisa Giorgetti

In families where there is a loved one who is living with congenital heart defects, it’s not uncommon for financial strain to occur. In some cases, individuals cannot hold a job and face uncertainty when paying for the needed extra care. Parents also can often be faced with two choices: one parent can leave the workforce to tend to the needs of the child or the family can hire qualified care to tend to the child while both parents are at work.

In these situations, the condition can cause financial stress. Fortunately, Social Security Disability benefits, in the form of monthly SSI payments, can help alleviate this financial strain, enabling families to provide their loved one with the comfort and quality of care he or she deserves.

Understanding Supplemental Security Income

The Social Security Administration (SSA) offers two disability programs: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). SSDI is intended for working adults who have suddenly become disabled and now need financial assistance, while SSI is a need-based program where applicants need to meet certain asset and income requirements.

In order to qualify for SSDI benefits, an individual must have earned the proper amount of work credits while he or she was employed. An individual can earn one work credit for every $1,200 made with a maximum of four work credits that can be earned each year. The exact amount of work credits needed to be eligible for SSDI depends on the age of the applicant.

If an individual doesn’t have enough work credits, if any at all, he or she could potentially be eligible for the SSI program. Since children with disabling conditions, most likely, have not had the chance to work and pay into the Social Security system, the SSI program would be ideal for them. Children who obtain SSI benefits receive a monthly disability payment from the SSA and can also be eligible for medical insurance that can help offset the cost of medical care.

As a need-based program, SSI requires strict technical requirements to be eligible. As of 2014 the income and asset criteria for SSI benefits requires that:

  • Household income does not exceed $721 per month for an individual or $1,082 for a couple; and
  • Household assets do not exceed $2,000 for an individual or $3,000 for a couple.  

However, when a child applies for disability benefits through the SSI program, only a portion of the household income is deemed to the child through a procedure known as the deeming process. This means that the household income may exceed the above limits and the child may still qualify for benefits because only a portion of the income is counted toward the child.

Deeming of income applies if:

  • The parents have income and/or resources that the SSA must consider; and
  • The child is under the age of 18; and
  • The child lives at home with his or her natural or adoptive parents or the child lives away at school, but comes home on some weekends, holidays, or school vacations and is subject to parental control.

Meeting the SSA's Medical Eligibility Requirements

In addition to meeting the financial criteria set forth by the SSA, the applicant must also meet the SSA's medical eligibility requirements in order to qualify for benefits.

When an individual applies for Social Security Disability benefits, the SSA compares the individual’s condition to a listing of conditions known as the Blue Book. This Blue Book contains a listing of all of the conditions that could potentially qualify an individual for benefits, along with the criteria that must be met under each condition. The Blue Book is separated into two sections, including a childhood section and an adult section.

For children who suffer from congenital heart defects, the condition is evaluated under the cardiovascular system disorders, Blue Book Section 104.06 – Congenital heart defects. According to this listing, in order to qualify for benefits, you must be able to prove that the child has been diagnosed with congenital heart disease, which has been documented with appropriate medical imaging or cardiac catheterization along with one of the following:

  • Cyanotic heart disease, with persistent, chronic hypoxemia as manifested by:

    • A hematocrit of 55 percent or greater on two evaluations that are three months or more apart within a consecutive 12-month period; or
    • An arterial O2 saturation of less than 90 percent in room air, or resting arterial PO2 of 60 Torr or less; or
    • Hypercyanotic spells, syncope, characteristic squatting, or other incapacitating symptoms directly related to documented cyanotic heart disease; or
    • Exercise intolerance with increased hypoxemia on exertion.
    • Secondary pulmonary vascular obstructive disease with pulmonary arterial systolic pressure elevated to at least 70 percent of the systemic arterial systolic pressure.
    • Symptomatic acyanotic heart disease, with ventricular dysfunction interfering very seriously with the ability to independently initiate, sustain, or complete activities.

For infants under 1 year old at the time of filing, with a life-threatening congenital heart condition that will require, or already has required, surgical treatment in the child’s first year of existence and the condition is expected to be disabling (due to residual impairment following surgery, or the recovery time required, or both) until the child is 1 year old, the child will be considered disabled until he or she is at least 1 year old. Thereafter, evaluate impairment severity with reference to appropriate Blue Book listing.

Adults suffering from congenital heart disease can qualify for benefits under the Blue Book section for cardiovascular system disorders in adults. Specifically, they can qualify under Section 4.06 – Symptomatic congenital heart disease. In order to be eligible, the adult must prove that the cyanotic or acyanotic congenital heart disease is documented by appropriate medically acceptable imagine or through cardiac catheterization. The adult must also prove one of the following:

  • Cyanosis at rest, and
    • Hematocrit of 55 percent or greater; or
    • Arterial O2 saturation of less than 90 percent in room air, or resting arterial PO2 of 60 Torr or less.
    • Intermittent right-to-left shunting resulting in cyanosis on exertion and with arterial PO2 of 60 Torr or less at a workload equivalent to 5 METs or less;
    • Secondary pulmonary vascular obstructive disease with pulmonary arterial systolic pressure elevated to at least 70 percent of the systemic arterial systolic pressure


Preparing for the Application Process

Prior to applying for disability benefits, you will want to properly prepare for the application process. This means gathering the necessary medical evidence to support the fact that you or your child meets the criteria listed in the Blue Book. This includes:

  • Copies of diagnosis reports and supporting lab and imaging results;
  • Clinical history;
  • Complete medical records;
  • Surgical history;
  • Treatment records; and
  • Statements from treating physicians.

Once all of the medical evidence and supporting files have been gathered, you can proceed with the application process.

Applying for Disability Benefits

When applying for Social Security Disability benefits for a child, you must apply in person at your local Social Security office. However, when applying for benefits as an adult, you may apply in person, over the phone or online. You will be asked to fill out a number of forms during this process. You will need to fill out each form in its entirety and provide as much detail as possible so the SSA can understand how your child qualifies for benefits under the Blue Book criteria.

You will receive a decision regarding your claim approximately two to four months after the date of the initial application. If you or your child is awarded benefits, the notice you receive will tell you what benefits you or your child will be receiving, how much you or your child will receive in month in the form of an SSI payment, and when benefits will begin. If you or your child is denied benefits, you have 60 days from the date of the notice to appeal the SSA's decision.

Appealing a Denial of Benefits

If you or your child is denied benefits during the initial SSI application process, don’t worry. A large percentage of applicants are denied during this stage of the process, and are able to successfully obtain benefits through the process of an appeal.

The appeal process usually consists of two stages including a request for reconsideration and a disability hearing in front of an administrative law judge.

If you do need to pursue a disability appeal, you may want to retain the help of a Social Security Disability attorney. These professionals work on a contingency basis and are only paid if you win your case, collecting 25 percent of the back pay your child is awarded, up to a maximum amount of $6,000.

An attorney can help you determine why you or your child's initial application was denied, if there are any weak areas in your claim or if there is a lack of evidence to support the claim. Attorneys can also help you gather the evidence needed to strengthen the case. Understanding the eligibility requirements and application process can help you to effectively file your initial claim.

3D printed heart saves baby’s life as medical technology leaps ahead

October 20, 2014

Surgeons at a New York hospital have credited 3D printing with helping to save the life of a 2-week-old baby who required complicated heart surgery.

Using MRI scan data, Morgan Stanley Children’s Hospital in New York City 3D printed a copy of the child’s heart, which was both riddled with holes and structured unusually.

Surgery was going to be complicated and dangerous, but this 3D printed heart provided the surgeons the opportunity to study the organ, and develop a detailed surgery strategy.

“The baby’s heart had holes, which are not uncommon with CHD, but the heart chambers were also in an unusual formation, rather like a maze,” Dr Emile Bacha, who performed the surgery, told Connecticut local media.

“In the past we had to stop the heart and look inside to decide what to do. With this technique, it was like we had a road map to guide us. We were able to repair the baby’s heart with one operation.”

The project was funded by Matthew’s Hearts of Hope, a Connecticut –based foundation.

They have said that another 3D printed heart is in the making, with details to follow in the next month.

Marie Hatcher, the foundation's founder, told The Independent: "This is a game changer for CHD babies with complicated heart anatomy.

Normally the first time the surgeon sees the heart is when the chest is open, now they have the ability to plan out the surgery ahead of time while looking at a 3 D Heart of the baby or child’s heart."

Like the team at Morgan Stanley, Austin had used the technology to inform his approach to heart surgery on a young child at Kosair Children’s Hospital.

“If I went in and did surgery, took off the front of the heart and did irreparable damage, the child would not survive.”

Using an experimental version of the Makerbot Replicator 2, Austin printed a copy of the heart in three parts.

He said: “Because I have an identical reconstruction I can take off the front of the heart and see inside of it and make a plan as to how I’m going to direct the flow of blood and move the obstruction in the heart.”

While the US is certainly pioneering this high-tech biomedical research, the NHS is exploring the use of 3D printing in modern medicine.

Wiltshire-based 3D printing company Replica 3DM provided 12 NHS Trust hospitals with manufacturing stations designed to help create replica hips for surgeons to practice hip replacement surgeries.

Last month, a scientist at Nottingham Trent University used 3D printing to produce a prosthetic human heart "as close as you can get" to the real thing.

The Ministry of Defence has expressed interest in the project.


Original Article Hosted By:The Independent (UK)