Tuesday, March 31, 2015

Life Updates

Other than issue related Emery and Blake updates, I haven't blogged about our life in general. Things have been chugging along as usual. Bruce left his accounting firm in December for a new job. Not much difference in pay, but his hours have dramatically decreased. He has gone from working 70 ish hours per week to about 45 to 50. He is so much happier and is rarely stressed out. I still am the one running all the kids to appointments and activities, but if there is a conflict, it is no big deal for him to get out of work to help out. He hated leaving his firm, but sometimes you have to make a decision to better balance your work/life style.

My volleyball coaching season went by super fast. I had forgotten how fun it is to work with little 5th graders. They were all so full of enthusiasm, it brightened my day. They dramatically improved from the beginning to the end of the season and were a great group of girls. I am so glad I decided to help out my friend. I was a bit hesitant about investing so much volunteer time when I didn't even have a kid on the team. But, I enjoyed it immensely. I'm looking forward to helping out again in the Fall.

December brought our family two additional drivers. Ashley got her drivers permit and Nicole got her drivers license. They haven't driven much throughout our snowy Michigan winter, but I'm sure they will be asking to drive more often soon. We are trying to find a good used car for Bruce so the girls can have his old car. It would be nice to have a few less places for me to drive to!

We had a great Christmas. Emery handled the holidays fairly well as compared to last year. The twins celebrated their 10th birthday in January. Blake had a big class party at Jesters Court (a big bounce/slide place) around the corner from our house. We had about 35ish kids and it was a lot of fun. Emery also had a great time there. Can't believe they were only 7 when we brought them home. Time just moves too fast for me.

Spring break is almost here. We are staying home and hopefully doing some major spring cleaning both inside and outside the house. No fun Florida trip for the kids and I this year. Bruce no longer has a crazy tax season, so I have no excuse to just get away with the kids.

I am looking forward to Spring and Summer. I have the twins signed up for a few new activities and we are planning a big family vacation. I will post about the activities and vacation soon.

Here are some pictures to enjoy. The twins have really grown, especially Emery. She is 4.5 inches taller than Blake now. She was about 4 inches shorter than him 3 years ago.

I couldn't get many pictures to load properly, so I am posting only a few.

Ashley all dressed up for a school dance.

Blake thought Gracie might be cold.

10th Birthday Celebration

My two drivers

15th and 16th Birthday Celebration



The weather cooperated with our chalkboard





Thursday, March 19, 2015

Autism - Therapy - Insurance Part 2

Continuing on with my endeavor to obtain services for Emery:

We purchased a separate policy for Emery in February, to be effective March 1st. My goal was to get everything in place for Emery to begin therapies this Summer to minimize school absences. Of course, prior to buying the policy, I learned what was required by the insurance company to obtain necessary therapies for autistic children (speech, OT, PT, ABA). I swear the requirements are there simply to cause exhaustion and intense feelings of being overwhelmed so you do not pursue covered therapies.

The first requirement is we must have Emery evaluated for Autism by an AAEC. An AAEC is an Autism Approved Evaluation Center as designated by Blue Cross Blue Shield. Emery's autism diagnosis from September, 2014 is not acceptable because the center that evaluated her was not a BCBS designated AAEC. There are NO exceptions to the stipulation. Your child's diagnosis is basically invalid as far as BCBS is concerned.

There are a few reasons why this bothers me. First of all, we already went through a 3 step process to have her evaluated. This process consisted of in-depth parent interviews, 3 hours of testing Emery, and a final consultation to provide her diagnosis and recommendations for treatment. Not only did we invest a lot of time in the evaluation process, Emery was already subjected to a grueling testing process.

In addition, the psychologist who did Emery's evaluation is very reputable. Now, I am not just saying this off the top of my head. In fact, Emery's psychologist, Dr. Michael Behen, was previously employed by a BCBS AAEC just two years prior to Emery's diagnosis. He was one of the professionals that performed autism evaluations at the AAEC. He left the AAEC to open his own autism center. In my opinion, going through another evaluation is a devastatingly huge waste of resources.

The AAEC's will not even schedule an evaluation for you until you have purchased your policy. Normally, this would not bother me. Let me explain why it does. There are 10 AAEC's in the state of Michigan. I thought we were really blessed because 2 of the 10 were right here in our home town of Grand Rapids. I called Helen DeVos Childrens Hospital first, simply because it is closer to my house. Guess how far HDCH is booked out for autism evaluations? Six to Eight months! On top of the 3 to 4 week evaluation process, it could be an entire 9 months before we can even think about therapy for Emery. Ugh! Keep in mind, we are Paying $300 per month for the insurance policy during this time.

So I then call Pine Rest, the second AAEC in Grand Rapids. Pine Rest is booked out a full 8 months. I am now beginning to once again feel helpless and hopeless. I decide to call the University of Michigan Autism Center is Ann Arbor. Not that Ann Arbor is close to us, but it is probably the next closest AAEC. This facility is booked out 12 months. Really?

Why in the world would the insurance company make us go through an unnecessary autism evaluation, when timely performance of the evaluations cannot even be provided? Why should Emery and countless other children with autism diagnoses be denied the medical care they so desperately need? What ever happened to the "Grandfather Clause"? If a formal autism diagnosis has already been received, why must we waste valuable resources to obtain a second diagnosis? If BCBS wants to designate what facility performs our child's evaluation, that is fine for children who have not already been evaluated and diagnosed.

If BCBS wouldn't disregard already obtained diagnoses, there would be a much smaller backlog of children waiting to be evaluated. Instead of wasting another year, these kids could be receiving treatment. Now maybe another backlog would be created because there are not enough therapists available to provide therapy. But, at least, our ASD child would not be subjected to another evaluation.

I decided to call another AAEC in the Detroit area. This one, the University of Pediatricians, was able to schedule our initial appointment in June. This appointment is only attended by the parents. One week later, Emery will be evaluated. Three weeks later, we have our final appointment to receive this facilities diagnosis and a therapy plan specific for Emery. Yes, that is 3 trips, back and forth, to Detroit. We will at least have a plan in our hands on July 7th, providing a diagnosis of ASD is given. This will hopefully allow us to get Emery started in an intensive therapy program.

My goal was to start therapy the second week of June. We actually will not get started until after July 7th. But, I think going to Detroit rather than waiting several months to even get an evaluation is a better option for Emery. She is not a typical ASD kid. She wasn't diagnosed until she was 9 1/2 years old. She never had early intervention services. We need to get her going as soon as possible.

I did contact HDCH a second time to see if Emery could be put on a cancellation waiting list. This was an option. I first had to have Emery's pediatrician send a referral and then they would contact me. When I contacted the peds office, they told me HDCH is now over 12 months out on scheduling. The peds office sent the referral off immediately. That was over 2 weeks ago and I still have not been contacted by HDCH. I will be calling them again to try to get on the cancellation list. If an appointment were to open up for Emery, it would be nice to make three 10 minute trips rather than three 3 hour trips! I'm not expecting it, but it can't hurt to try.

That is my story pertaining to autism, therapy, and insurance. Definitely a challenging situation. Praying it eventually works out in the end. But, I am learning to be cautious with my hopes and to expect setbacks. All we can ever do for our ASD kids is to keep trying. I will never give up on Emery. I know she has potential given the right therapies. Getting these therapies can be a frustrating and time consuming process. Emery is worth it.





Thursday, March 12, 2015

Autism - Therapy - Insurance: Part 1

When we received an autism diagnosis last Fall for Emery, I sighed with relief. After nearly 2.5 years of trying to help her and figure her out, testing this and that, and never really getting anywhere, we finally had a starting point. A basis to develop a plan to help her. I thought we had reached a peak in our struggles with medical professionals and health insurance agencies. We had an actual diagnosis. We lived in Michigan. Michigan has a mandated autism benefit law. I had been so desperate to help my daughter for so long. Now, everything should fall into place, right?

Not. My first dose of reality came when I learned that the company my husband works for is self-insured. What does that mean in the world of autism? State autism benefit laws are not applicable to self-insured companies. These companies are governed by the Federal Government, not the State. Self-insured companies are not required to provide autism benefits. Unfortunately, many large sized companies are self-insured because it is economically beneficial. This results in a "crack" in the system between ASD kids able to receive medical care and and those that can't. Emery slipped into this crack.

After feeling completely devastated and having a good cry, I once again got back on the Internet trying to find a way to get my daughter the medical care she needs. My research led me to two state and local organizations that provide insurance or medical care for ASD kids not covered by insurance. I started to feel like all hope was not lost. I contacted both organizations immediately.

At this point I received my second dose of reality. The first organization told me that they do provide medical care for kids diagnosed with autism. The caveat? The child must be under the age of six. Emery was 9 at this time. Another crack. The second organization provided low cost insurance coverage for a variety of illnesses. Any child age 18 or under not otherwise covered qualified. Great! Emery's age would not prevent her from getting the care she needed. Over 2,000 diagnoses were covered. Autism was not one of them. Crack #3.

More tears and hopelessness ensued. Now what? I had a soon to be 10 year old daughter, that has an autism diagnosis, cannot talk, pulls her own hair out, slams her back into walls and counters, has too many ocd behaviors to list, and I cannot get her the medical care she so desperately needs. What is wrong with our society?

We then decided to check into an individual health insurance policy for Emery. Obamacare makes it legal to obtain a secondary insurance policy, if autism benefits are not covered by the child's current insurance policy. Unfortunatley, we did not qualify under Obamacare for low cost insurance. The annual income threshold is quite low and it doesn't account for a family's expenses. Anyone with special needs in their family understands the additional expenses incurred with special needs. My husband makes a decent salary. But, in no way could we afford the recommended 24 to 30 hours per week of therapy at $200 per hour. So, Emery fell into yet another crack.

If we wanted to get Emery the therapies (ABA, Speech, and Occupational) recommended by her two neurologists, her psychologist, and her pediatrician, we would have to purchase a private health insurance policy for her. So I began looking into individual insurance policies.

We ended up buying a very good policy through Blue Cross Blue Shield. The policy eventually covers autism benefits (more on this in another post) and has low co-pays, a low deductible, and low out of pocket costs. Of course, this does not come cheap. $300 a month. It is still cheaper than paying for her therapy directly. We are not taking her off our family policy because there is zero cost savings. We pay a flat family rate for our current health insurance regardless of the number of kids on the policy.

I believe the extra $300 per month will be worth it for Emery in the long run. The ironic part about this situation is that our family insurance policy is also with Blue Cross Blue Shield. It is crazy that we have to have a second policy to cover ASD. I wonder what other diagnosed illnesses companies are not required to cover?

Emery slipped through every crack possible. I am grateful we can afford the $300 per month. I am certain other families fall through the cracks. What happens when a family cannot afford a private policy? Their ASD child suffers unnecessarily. It just doesn't seem right to me.

Part 2 coming soon.





Wednesday, March 11, 2015

Aging Out - Pictures of Preston

Here are pictures of Preston who is close to being taken off adoption registries. Please pray and spread the word so Preston can find his family. See this post for contact information.




Thursday, March 5, 2015

Could this be your son?

Preston is running out of time. He is not running out of time to catch the bus. Or to do his homework. Or to make it to practice. Or even to finish his chores.

Preston is running out of time to have a family.

Preston could soon be homeless.

WACAP asked me to advocate for Preston. His information is detailed below.

Could Preston be your Son?

Preston is aging out of the possibility of adoption—we need a US family with a homestudy by mid-March or he will be too old to be adopted and is in danger of becoming homeless!

Preston, born in June 1999 in Eastern Europe, is described as communicative, happy and extroverted; a boy who is very active and has a strong curiosity. He’s able to express his emotions and feelings and is gentle. He works to make and maintain stable friendships and prefers group activities to individual ones. He respects routines and is able to overcome emotional barriers when communicating with strangers. He lags behind a bit in school but would probably do well with some individual encouragement. Preston is considered healthy with no known medical conditions. Please ask about his excellent video of him break dancing!

There is a $3,600 grant to assist qualified families ( incomes below $125,000 adjusted for family size) with this adoption. In addition, this child’s country will reduce expenses in the $2,300-$5,200 range to help any family adopt this child, regardless of their income. WACAP ( also provides free adoption financing coaching/consulting to our families, to help you develop a financial plan for Preston’s adoption. You’ll have live coaching, online-webinars and a gift registry service. You’ll learn about the Adoption Tax Credit, grants, loans and fund raising. If you want to schedule a session with the coach, please contact us.

To see a detailed chart of the expenses involved please visit To discuss the adoption process for Preston, please email Lynne Mason or Tami Mason or call her at 206-575-4550.

Please feel free to advocate for Preston on your blogs. All WACAP asks is for his information and pictures not be posted on Facebook.

Prayers for Preston are appreciated.