Friday, August 16, 2013

Mito & Disability Benefits: Guest Post

One of the more daunting things I have had to face when it comes to my children's needs has been finding what benefits might be available, and then applying for them. When there is already so much going on in every day life to support a medically complex/special needs child, adding in a bunch of paperwork, and navigating an unfamiliar system can be overwhelming. It is worth the effort, and there is help out there to take some of the mystery out of the process.

Molly, at Social Security Disability Help (, contacted me recently to ask if I would allow her to contribute to my blog with an article that could be helpful to my readers, and I jumped at the chance to have someone far more knowledgable than I to share this information. I have some additional information to share at the end of her article regarding Waiver programs, and some personal "words of wisdom". 

Applying for Disability Benefits for Your Child with a Mitochondrial Disorder
According to the United Mitochondrial Disease Foundation, mitochondria produce about 90 percent of the energy that the human body needs in order to function. There are many different diseases and illnesses that affect human mitochondria. Mitochondrial disorders affect people in varying ways and often cause a host of severe health complications.

Although adults can develop mitochondrial diseases later on in life, many individuals are either born with mitochondrial disease or develop it within the first ten years of their lives.  Caring for a child with mitochondrial disease comes with a unique set of responsibilities and challenges. Among these challenges is the added expense of specialty medical treatments, supportive care, and assistive technology. Although many of these things are required to keep a child with mitochondrial disease comfortable and healthy, they can also be very costly.

If your child has mitochondrial disease, you may qualify for Social Security Disability (SSD) benefits on his or her behalf. These payments can be used to provide your child with the things they need to live the healthiest lifestyle possible.

Is My Child Disabled?
To qualify for any type of SSD assistance, your child must have a documented disability. The Social Security Administration (SSA) considers children disabled if they meet the following criteria:

·       Your child does not earn a substantial income
·       Your child has a physical or mental condition that significantly limits his or her daily activities
·       Your child’s condition is expected to last at least one year or result in death.

In addition to meeting these criteria, your child must also meet very specific technical and medical requirements.

Social Security Disability Insurance
The SSA runs two separate programs that provide benefits to individuals with health conditions and disabilities. The first program—Social Security Disability Insurance (SSDI)—offers benefits to disabled workers and their families. Because eligibility for SSDI is based on taxes and work history, many children and young adults cannot qualify on their own record.

However, if a parent or guardian already receives SSDI, a child may be eligible to receive benefits on the qualified parent’s record. It is important to note that, if your child is over 18 but became disabled before 22, he or she is considered an “adult child”. Adult children may also qualify for SSDI on an eligible parent’s record.  This type of payment is called auxiliary or dependent benefits. You can learn more about this here:

Supplemental Security Income
The second disability benefit program is called Supplemental Security Income, or SSI.  SSI benefits are paid to elderly or disabled individuals who earn very little income. SSI has no tax or work-related requirements. For this reason, SSI is often the best option for young adults or children who haven’t had the opportunity to work or pay taxes.

To qualify for SSI, applicants cannot exceed very strict financial limits that are put in place by the SSA.  When an applicant is under 18, a portion of his or her parent’s income will be evaluated to determine whether or not he or she is eligible. This process is called deeming. To find out what types of income are deemed and what types are not, visit this page:

Once your child turns 18, or if he or she is already 18, the SSA will only count his or her income to determine eligibility for SSI.

Medical Requirements
In addition to the previously mentioned technical requirements, your child will also have to meet very specific medical criteria. These medical criteria are listed in the SSA’s blue book—the official list of potentially disabling conditions and qualifying criteria. There are many different mitochondrial diseases and not all are listed in the SSA’s blue book.  

If your child’s condition is listed in the blue book, there will be a list of very specific medical requirements that you must be able to document in order to qualify. If your child’s condition is not listed in the blue book, he or she may still be able to qualify if their symptoms closely match those of another listing.  Depending on your child’s specific symptoms, he or she may qualify based on the following listings:

·       100.00-100.03- Failure to Grow
·       111.00-111.09- Neurological (covers motor dysfunction and seizure disorders)
·       112.00-112.12- Mental Disorders (covers autism spectrum disorder and developmental delays)
·       102.00-102.11- Special Senses and Speech (includes vision and hearing problems)
·       104.00-104.13- Cardiovascular
·       105.00-105.10- Digestive System (covers liver disease and gastrointestinal disorders)
·       109.00- Endocrine (diabetes)
·       106.00-106.07- Genitourinary (kidney disease)

It is very important that you collect thorough medical documentation of each of your child’s symptoms prior to submitting his or her application for disability benefits. Documentation should include records of his or her diagnosis, lab test results, history of hospitalizations, response to any treatments, and any other relevant information. You should also collect written statements from any professional adults who interact with your child on a regular basis. This can include teachers, doctors, therapists, or coaches. Each statement should outline your child’s symptoms and how they interfere with his or her daily activities.  The SSA requires these records as proof of your child’s illness. Without these records, it is not likely that your child will be approved. For a complete list of the documentation you will need, see the Child Disability Checklist-

Compassionate Allowance Listings
The typical application process can take months to complete. The SSA recognizes that individuals with certain conditions cannot be expected to wait the standard processing times. For this reason, the SSA allows people with severely disabling conditions to be approved for benefits in as little as ten days. This is called the Compassionate Allowance (CAL) program.  Fortunately, certain mitochondrial disorders are included among the conditions that qualify for compassionate allowances processing—including Pearson Syndrome, Alpers Disease, NFU-1 Mitochondrial Disease, MERRF, and Leigh’s Disease. To qualify for CAL processing, you do not need to fill out additional paperwork. The SSA will evaluate your child’s claim and expedite it accordingly.

The Social Security Disability Application Process
Once you have collected the necessary documentation and feel ready to begin the application process, you will be required to complete two different forms—the “Application for Supplemental Security Income” and the “Child Disability Report”.  Although you can complete the Child Disability Report on the SSA’s website, many applicants prefer to schedule an appointment to complete both documents in person.

It is important to remember that the application process for disability benefits is not simple and straight forward. In fact, many initial applications are denied. If your child’s initial application is denied, do not panic and do not give up. You are allowed to appeal this decision. Although the process can be difficult to navigate, many people find the end result to be worth the hassle. Once you are awarded benefits, you will be able to provide your child with the necessities of a comfortable and healthy lifestyle.

For more information, visit Social Security Disability Help or contact Molly Clarke at

Thank you, Molly, for the insightful article!! Sometimes, just seeing something simply laid out can remove some of the anxiety over delving into something like this.

I wanted to add to the information Molly shared, with some of the other benefits that may be out there for families with medically complex/special needs children.

Katie Beckett Medicaid Waivers
All states have Waiver programs, generally called "Katie Beckett" Waivers, although each state has specific names for those that they provide. These programs are technically Medicaid Waivers that allow the child's needs to override the income requirements otherwise placed on families to qualify for SSI. Each Waiver is a little different in what it provides, but all provide Medicaid benefits in addition to any number of other options to provide support. Most include either respite, attendant, or nursing hours; while some include alternative therapies, home modification money, and more.

Many states have a waiting list that can be, as it is here in Texas, as long as 10 years before you can access these Waivers, so getting on the list as early as possible is imperative, even if your child qualifies for SSI benefits at this time. Your income could improve, causing your child to lose the SSI benefits, but more importantly, these Waivers supplement the benefits even if your child continues to be eligible for SSI.

Words of Wisdom
I remember vividly how, in those early days when your just beginning to accept and acknowledge that your child may be delayed, or that they may have a chronic medical condition, that all you want to do is assume that your child will improve. That, especially ten years down the road, they will certainly not need this help. Please don't assume hopeful and aim in that direction, but be prepared by going forward and getting on the waiting lists for these programs. If, as we all hope & pray, it is not needed when they reach the top of the list, you can always decline the evaluation for the benefit. 

A Camp wrap up post is being worked on!! Have a wonderful weekend!!

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