Sunday, February 10, 2013

2013 Funding Priorities for Esra's Trust

1)  $20,000 for Wheelchair Accessible Van

We love this 2012 Toyota Sienna BraunAbility Rear Entry Van.  The LE model with power doors, power hatch, power ramp, plus leather seats are positives to protect Peggy's spine longevity.  Plus, the low-impact power steering helps Peggy from fatiguing so quickly during long drives to park days and music classes in the East Valley of the Phoenix Metro Area. 

This will a great blessing to our family.  Please help us with our fundraising goal of $20,000.  We can pay $40,000, but we do not want to exhaust our cash reserves.  Since we just got out of debt, we are hesitant to finance the last third.  

Please help us fundraise this last portion! 

2) $10,000 for Daytime Caregivers 

We believe Esra's needs require more than what is being provided.  Her developmental delays and daily needs demonstrate a need for one-on-one assistance throughout her daytime hours. 

 We homeschool our children. 

 Because of this, we have declined all services from the school district.  We do receive State-funded Respite, Habilitation, Attendant and Therapy services.  We have 600 hours of Respite per year.  We divide that weekly to equal about 11 hours per week.  Attendant care is 10 hours per week and Habilitation is 11 hours per week. That is a total of 32 hours per week or 4-5 hours per day.  

Life would improve for Esra if she had a caregiver with her 40 hours per week or 8 hours per day. 

We have two wonderful caregivers working with Esra currently.  They provide life-skills training, inclusion in homemaking routine, companionship on community outings, academic review, safety in all settings and toileting assistance.  Because the state wages are low, we pay our ladies the difference for what extra services we need that are not covered by the state.  This is exhausting the Trust quickly.  We need you help to keep being able to pay our perfectly suited, highly qualified caregivers by replenishing the Trust with a generous monthly ($1,000) or yearly ($12,000) donation. 

3) Labor and material to add accessible elements to the backyard for play and learning: 

this backyard boat is well-loved by all the grandchildren who visit Grandma Lynda's in NY
  • Tables, 
  • Water Wall 
  • Places to Hide 
  • Playhouse with canvas roof (made from parts from our old wheelchair ramp)
  • Accessible Dinghy with Wheelhouse 
  • Residential Outdoor Climbing Wall 
  • Hammock
  • tree stumps of various heights
  • vertical gardens
Can you help us?  Donate today! 


Checks and Money Orders 
Please make them out to "Esra's Trust"

Mail to:
Esra's Trust
Rocky Burt, Trustee
PO Box 2615
Avila Beach, CA 93424

Saturday, January 5, 2013

Dear Tricare

So, the first post of this beautiful New Year is an appeal to Tricare.  2013 may indeed be a year different than those before.  Full of assertiveness, organizational gusto and self-determination like never before. Three Cheers for Mama Bear!  

For those veteran, appeal-writing, Mama Bears out there, what am I missing in my appeal? This is just a draft, so I am working on acronyms and the like still.  

We are appealing the decision by the TRIWEST Medical Director to deny our access to appropriate managed care for our daughter through our Active-Duty Military benefits. 

Our authorizations have been denied for consults and test at Children's Hospital Boston (CHB) in Boston, MA because the medical director sees that they are "for our convenience."  We disagree with that statement because there is nothing convenient about caring for a special needs child like Esra, especially when Peggy, her mother and primary caregiver has late-stage Lyme Disease and a degenerative spine and Sam, her father and sponsor is Active-Duty managing a nationwide search and rescue project.  The medical director also believes that all of our needed specialties are available in the Metro Phoenix area.  Having individual specialties available is much different than having functional, established teams able to manage Esra's many challenges concisely and expertly.

Esra current challenges are:
EE Deletion, a rare genetic disorder of the 6th Chromosome that is her namesake.
Failure to Thrive
Myelomeningocele, the most severe form of Spina Bifida,
Hydrocephalus, corrected with a VP Shunt
Chiari II Malformation
Aortic Coarctation, corrected twice
Agenesis of the Corpus Collosum
Sub-mucous/High Arched Palate
Obstructive Sleep Apnea
Bowel Malrotation
Neurogenic Bowel & Bladder
Non-Ambulatory, uses wheelchair
Hearing Impairment
Corrective Lenses
Severe Speech Delay
Danger to Self
Global Motor and Cognitive Delays
Uses Augmentative Communication

Because of Esra's acute needs, travel to Boston is what is required. It is not about money. It is for quality of care.  It doesn't make sense to see a new set of 18 specialists every time we move.  In September 2012, when our authorization requests were submitted to attend care at CHB, those requests were denied, but we were approved to receive care from providers in Denver, CO.  It certainly does not make sense to have our authorizations altered for us to travel to Denver to see new providers, when we need to travel to see our established providers near our previous duty station.  We have never lived in Denver!  If this decision has been made solely on cost from the Prime Travel Reimbursement then we have to ask:

1)Is it cheaper to travel to Denver than it is to Boston? 

No. Because of our previous connections and knowledge of the system in Boston, it is cheaper for us to travel to Boston.

 If this decision is based on cost of travel per the Prime Travel Reimbursement, then we can tell you it is cheaper for us to travel to Boston. Through our church network, which we were actively involved with in the region, we will be housed by an ecclesiastical leader in a nearby town. Hotel prices average between $250-$400 per night, depending on when the universities are starting or completing semesters. Furthermore, CHB has a compassionate travel program where Southwest airlines donates seats to patients with active appointments. We will be borrowing a vehicle and we usually depend on local eateries for meals for lunch. We will be eating breakfast and dinner with the host family or with other families that we have gotten to know through the Myelodysplasia Clinic that live locally in Boston.

If we attended clinics in Denver, it would be costlier for the Prime Travel Reimbursement.   We would not even consider traveling to Denver because we don't need new physicians, and care at 5,000 feet elevation would be detrimental to Esra who uses a CPAP because of airway and oxygen issues. Both her oral surgeon in Boston and both Pulmonogists in Boston and her in Phoenix have recommended that we consider a tracheostomy. Travel to Denver would be physically taxing to Esra, a paperwork burden and it would cost more because we do not have any connections in Denver. We would require airfare, hotel, rental car and food reimbursement.

Other questions we have to ask are:

2) Are the services that Esra needs available here in Phoenix? 

No. The antiquated management system imposed by the State of Arizona and the disjointed services of a regional hospital like PCH cannot successfully serve complex care children like Esra.

There are singular practitioners for most of Esra's specialties, however, these singular specialties and the AHCCCS system here in Arizona are archaic and disconnected. I have tried to keep all of Esra's providers in one digital management system by staying with providers at Phoenix Children's Hospital. But collaboration and comprehensive care is hard to achieve, as none of them confer in a team setting. Multi-disciplinary clinics do not exist for Spina Bifida or Motility or Facial Anomolies here in Phoenix. To address Esra's largest cluster of symptoms, the closest we can get is using the best palliative-care pediatrician. She directs us to the appropriate specialties to monitor her spine, brain, bladder and kidneys. But I feel that we are 50% effective here in Phoenix, because Esra's care lacks the kind of collaboration, and a comprehensive, long-term care planning that we were getting at CHB.

As I stated previously, Esra's diagnoses, especially Spina Bifida, are not being addressed in a team setting. There is always talk about creating a clinic for Spina Bifida in Metro Phoenix are, but nothing has materialized. However, I do not believe the AHCCCS-based Comprehensive Rehabilitative Clinic (CRS) at St. Joseph's Hospital in Phoenix is adequate. It is antiquated, does not cover all of Esra's diagnoses, and provides mediocre service. I have only received luke-warm reviews from fellow mothers regarding CRS Clinic. Never stellar reviews.

The past 2.5 years have been counter-productive, as I have attempted to find the services that she needs here in Phoenix, but have been unsuccessful. We have done our our best to rebuild Esra's team here, but within six months of PCSing, we have found that she would be best served for the remainder of her pediatric years at CHB. Furthermore, we were never made aware of the “continuity of care” clause that places a time limit on returning to your previous billet's medical team when you have PCS'd out-of-network. after being immersed in the world-class comprehensive system and collaborative specialty clinics of CHB, the Phoenix offerings were inadequate and inappropriate for Esra.

3) When does Sam's billet end?  When will your family be transferred next?
Sam's billet here in Arizona will be ending in the Spring of 2014. That means we will have orders for a new duty station in 12-14 months. It is highly likely that Sam will return to Northern Virginia and DC for his remaining seven years of service. From the moment we know where we are transferring, my energies will shift to reorienting our services to our new duty station. This will include searching for a wheelchair -accessible home, congregation, pediatrician, dentist, optometrist, state-administered therapies and long-term care. The sooner I have an address the sooner, we can get services for Esra (or get on the waiting lists for them).

The one thing I should not have to recreate is our entire medical team, as she has exactly what she needs at CHB. We certainly will not be returning to Phoenix for her care for reasons addressed earlier. CHB is where her care has been and that is where her care will remain.

We believe that retaining the team established at CHB throughout Esra's developing years will ensure our family is spending their limited energy and resources on addressing and solving problems, not hunting for new providers, interviewing new providers, doing new patient paperwork, and medical history interviews by every resident, fellow and attending. I am willing to do this but only if it means finding a better provider than the one I have, not a new one every few years. When we enter an exam room, I no longer want to meet with a stranger. There are too many people involved with her care. We need to know the specialists because for every specialist, there are the nurses and support staff that are equally important to Esra's care management.

I have all the documentation for the stated above. It is available at your request.