A little help

For years we’ve been eligible for respite care for Rhema through our military health insurance.

For years we have been unable to access that care.

I won’t bore with the details but suffice to say the system is sort of steeped in bureaucracy.

Unfortunately, whenever we mention our health insurance to anyone in the know, we are met with groans.

But God bless my husband who’s never taken no for an answer.

Once, a couple years ago, we arrived at the hospital for long-term EEG monitoring for Rhema. Somehow we thought that we’d be seeing a world-renowned neurologist. We were quickly informed that that was not at all the case. It was explained to us that this important expert very rarely came on the ward. I imagined the good doctor tucked away like a mad scientist in Harvard Medical School working to rid the world of epilepsy. Silly me to think he’d have time for us.  

After we were settled into Rhema’s room, Brandon stepped out into the hallway with his cell phone, a pen and pad of paper. Sometime later, he came back into the room and stated, “Dr. D is taking on our case. He’ll be here to meet with us in about an hour.”

Even the nurses on the floor were shocked.

Brandon has this remarkable ability to make stuff happen, to get people to see things his way. I learn from him because so many times I’ve been ready to wave the white flag, and he keeps pushing, fighting, trying. And I’m so thankful that he does.

As I’ve blogged before, my girl is strong. She’s not the little toddler anymore that I can chase down in a public place or lift off the floor in the midst of a meltdown. She is older and seemingly aware of the fact that her physical strength is a source of power. She receives intensive one-on-one support all day every day at school. But at home, well, that’s just not possible.

She has many, many good days. But then there are days when everything seems to fall apart and… I need help. (So hard to say that, but it’s just the truth).

So when Brandon left a couple weeks ago I was a tad bit concerned. A simple walk to the park – just me and the girls? Not possible. Not safe.

So he spent hours on the phone talking with supervisors of the ECHO (Extended Care Health Option) program, a supplemental program for special needs families. In short, the respite care regulations required that such care could only come from a certified medical professional employed by a home health care provider in the network. (I suspect that this plan works better for families requiring specialized health care from a home nurse or nursing assistant, not a family with a child with autism). It seemed no organization could be found in the entire state that provided the behavioral support and safety support we needed.

He wrote emails, called Congressmen in various states, had conversations with military liaisons.

Portions of his letters:

First, I want to make clear that I am addressing this issue not as a complaint, but as an issue that I suspect many military families with special needs children face. While the TriCare ECHO respite care benefit is not predicated on separations (deployments/TDY/etc.), the unmet need and inaccessible respite care benefit becomes an even bigger issue for military families during deployments or TDY assignments when the 24/7 care burden shifts from 2 parents sharing the duties to 1 parent absorbing the entire load of round-the-clock care. So, I am bringing this issue to light for the general knowledge of the Representatives and the benefit of the general special needs military community…

In our particular case, we are currently stationed in Massachusetts due to my daughter’s medical and educational needs. Our ECHO case manager has been unable to find (over 4 years of trying) any qualified agency to fill the respite care hours for our daughter due to the very specific/high standards for caregivers. As I leave again for a 4 month TDY assignment, we are trying once again to cobble together respite care for my daughter. Tricare ECHO should provide a portion of the respite care my daughter is entitled to, but like many families we are unable to access the benefit due to the language contained in the Tricare ECHO manual.”


Well, somebody finally listened.

Because a couple days later, after nearly 5 years of trying, not one, not two, but *three* state agencies were in contract negotiations with our health insurance.

And last week I just about hit the floor when someone from XYZ Agency called:

“Hello, we have a home health aide who’s prepared to work with your daughter 4 hours a week. We’d like to meet with you as soon as possible to discuss your needs, but your aide is ready to start this Saturday.”

“… Huh? Wha-? Seriously?… Well, Hallelujah!”


19 thoughts on “A little help

  1. Hallelujah — Amen!

    Well done, so very well done, Brandon!

    And what a beautiful photo, right down to the slight blur of the motion and the halo of light around the two of them in their joy.

    (And oh, the physical strength-and-speed thing. How we identify with that over here.)

  2. YAY!!!!!! Oh that is wonderful. I just love your husband and his dedication to you and your family.
    I know it’s hard to ask for help. But this is huge for everyone in your family. Hallelujah indeed!

  3. I am so glad…so happy for you…..your post said 4 hours of care….I hope that is 40…..also, I am sure that you have explored Medicaid Waivers for Rhema…..Dawson is on waiver….I do not know what we would do without it…again I am sure that you already know about Waiver prgorams…..Sending you thoughts of peace and support while your husband is away…..

    • nope, it’s 4. just 4 hrs/wk. but it’s a start!
      and yes, the husband is exploring the Medicaid waivers and we have applied to two other organizations for funding. we’ll see…

  4. Oh, I am weeping tears of joy for you! After Nik not sleeping for four years, we finally have been able to get some help at night. It isn’t perfect by any stretch, but it makes SUCH a difference.

    I hope and pray that someone somewhere will recognize that FOUR hours just isn’t enough. At the very least, it should be EIGHT or TEN. Still, it’s a start! Hallelujah!

  5. I wish everything didn’t have to be so hard. It’s takes so much time and energy to fight for services. Time and energy I’d (and I’m sure you’d) rather put into other things. I’m glad you got some help. Hopefully this is just the beginning.

  6. I am so impressed by B’s willingness not to give up, his belief that effort can create meaningful changes, and his way with words under these circumstances. Very inspirational 🙂

  7. I have tears in my eyes! Yes, tears of joy that you are finally getting some much needed help but the tears started when I saw that picture. It is very clear in that picture that Brandon loves Rhema. And his love is also very clear through his tireless pursuit of quality care for Rhema.

    I will continue to pray for you while Brandon is gone. Blessings to you and your sweet family!

  8. Hallelujah! I used to provide respite care (for adults though) and it can make all the difference to an overloaded family. It is crazy how hard it is to access, and 4 hours is really just a start, but WAY better than nothing. Great job, Brandon!

    Oh, I hope you plan something amazing for those 4 hours a week, even if it is just sitting by yourself in a quiet room!

  9. hallelujah!!!!
    go brandon!
    go jeneil!
    you are both such fighters!

    and i’m saying… 4 hours people… come on, let’s bump it up : )


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