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!!

Tuesday, August 6, 2013

25 Years of Wedded Bliss

Happy 25th Anniversary to the love of my life. You truly complete me.

Twenty five years ago on this day, I married the man I love. We were so young, and already facing such incredible trials, and yet, somehow we just knew this was what was meant to be. We knew that we grew stronger each day, together.

I remember the day far too vividly for it to have been so long ago. I remember it being the most amazing day of my life, even if it wasn't perfect, and even though you were sick. So very sick. I remember the flowers, the dresses, the people we love that were there for us. I remember the contingency plans "just in case", and how determined you were that it happen on this day, come hell or high water. I remember how grateful I was to have it official; how grateful I was to be your wife.

While certainly not the textbook perfect wedding, we never have done anything in the typical fashion, have we? All the parts that were important, were there.

I remember the early days, just you and I. We quickly became a pretty invincible team!!  We each grew into stronger people, independently & together. We faltered sometimes, and struggled, but we fought our way back to each other every time. It was together that we were strong, and capable, and whole.

I remember the dreams we had of having a family. Long talks about what our family would be like, what we wanted to share and teach our children, how we envisioned this life we saw in the future. And I remember the heartache of those early years, and how we supported each other through each and every one of them.

We have created an amazing family....far more amazing than we could have possibly hoped for. Way better than any dream we had....more complete than we could have envisioned. We have lived life more intensely, and more fully, than most, and we have never lost sight of each other.

It has never been easy, but it has always been worth it.

Last year, I faced the idea of a life without you in it. I was forced to contemplate how it all might look; how we would survive it. I realized that the strength you and I had built together would sustain us, but that I really, really need you. You always have my back, and I always have yours....and this is why we are so damn good together.

I love the depths of my soul....always and forever.
Thank you for loving me, flawed as I am, so completely.

Thursday, August 1, 2013

And So It Begins: McNair Kid's Camp Fund 2013

Thanks to the generous support of friends and family, we began our journey to Camp Korey Friday evening!! We continue to need your help, if you can. See the end of this post for further information.

Thankfully, Madison's reaction to the anesthesia on Wednesday came under control; all the packing and running around to collect supplies happened; and all the phone calls to ensure everything was in place on the other end of this journey were made. We were off to the airport and ready to be in Seattle!!

Mother Nature had a few plans of her own, and our flight to Seattle took a detour. From a planned stop in Albuquerque, to Lubbock, TX for refueling, and back to Albuquerque where we then had to wait for a new crew before heading on to our destination.  We were scheduled to arrive in Seattle at 10:00pm Friday, but didn't actually arrive until 3:00am Saturday!! Twelve hours from arriving at the airport in Dallas, to leaving the airport in Seattle, made for a long, long evidenced by our leaving a bag at the McDonald's in the terminal and not realizing till we were loading our shuttle to the hotel!! Not just any bag, but our medical bag....the one with every single important thing we needed for this trip!! After a mad dash back to where it was left (with a stop at the ticket counter for a pass to get past security, and the loss of a water bottle at security), Michael was able to reassure the security person just beginning to examine the bag, that it really was ours and we needed it, badly!!

 Thankfully, all survived the adventure, and gratefully we had a day to rest before anyone was due at Camp. We needed it!!!

Sunday could not get here fast enough for Chance & Madison!! Especially Chance, who both returned to his beloved Camp Korey, but also turned 20 years old!!!

It was, as always, amazing to drive up to the front of Camp see the place we love so much. It only got better as we made our way to volunteer check in and started seeing the people we love so much. Chance and Madison could not have been happier than they were in that moment.

Abby enjoyed some time in the "only child" status that evening, and then was more than ready to get there on Monday. Arriving to cheers, and seeing the faces of the people you have not seen for a year, makes all smile pretty big. Spending the afternoon waiting to get Abby checked in was an opportunity to drink Camp Korey in again. To sit and look out over the fields, take in the beauty that is this special place, and to spend time reconnecting with old friends, and making new ones.

The afternoon ended with meeting the nurse and counselor that are assigned to Abby. We went over all her medical paperwork, and chatted about my girl, and as we were wrapping things up, Abby's nurse shared the most amazing thing....She shared that she is there this year because of our family!! I wasn't quite sure what she meant, so she went on to explain that a friend of hers, a fellow nurse who has volunteered at Camp Korey before (and whom we adore), had been asking her to volunteer for a couple of years. Last year this friend shared our blog with her, and it convinced her she needed to be a part of this years Mito Week!!! Not only is she there, but she even got one of the McNair kids to love on and take care of!! How awesome and amazing is that!!

I cannot even begin to express how much this meant to me to hear.

Each year we wonder how our time at Camp Korey could possibly be as good as the previous year....and each year it just gets better and better. This year has already proven to be no exception!!

In part because of what happened Tuesday evening.

Michael and I were asked to attend a "friend-raiser" for Camp Korey, and to share our story. It happened at an amazing historic home on top of Queen Anne Hill, and was attended by some incredible people here in Seattle....people we hope will become a part of the Camp Korey family. I shared our story, and how profoundly Camp Korey has touched our lives, and was reminded how difficult it is to find the words to convey how life changing this week in the summer has been for my children....for our family. I did my best, and it seemed to have been well received. It was SUCH an honor to have this chance to give back, just a little, to this place we love so much. I hope we have a chance to do even more in the future!!

We have received a random text here and there from Chance & Madi, and there were pictures posted on Facebook of what appeared to be another totally messy food fight today!! Promise to share pictures when we get home!! We cannot wait to see them all on Friday and hear all about their week!!!

We still need your help to make this life changing time possible. We are about $575 from our goal amount, and desperately need to raise this money if at all possible. I am extending the fundraising time, and I am so sorry to have to continue asking. We are so incredibly grateful for the amazing support so many have already shown. Any amount is helpful, and it adds up quickly.

Donations can be made at or by clicking the link at the top right of this blog. If you prefer to send us the donation directly, please contact me at and I will get our address to you.

Again, thank you. More updates to come!!!

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