Caring 4 Krabbe Kids
A Resource for Families Dealing With Krabbe Disease



Financial problems during this time can be devastating.  We so hope that you are blessed with good health insurance. 

A)    Insurance Case Manager – You should request a Case Manager from your insurance company.  Your insurance company may or may not come to you to offer this, so you should ask them up front.  Case Managers are used in cases just like these – times of extreme illness with lots of issues that need to be coordinated, resolved and funded.  Our Case Manager was a nurse.  We could fax her claims, discuss things we needed (and she would go request the approval), and dispute something that wasn’t covered.   Most of our requests were made through Hospice and not the case manager.  In our case, our insurance company paid a monthly fee to our Hospice organization, who then paid for what we needed.  If you are not using Hospice, a case manager will be even more important and beneficial to you. 

B)    Hospice – Ours was “Alive Hospice”, but there are many others.  Our insurance company paid a monthly fee to the Hospice organization which covered the vast majority of Dylan’s care.  They paid for some very unusual things such as:

1)    In home nurse and doctor visits

2)    Diapers (after age 3, when a child would typically be potty trained)

3)    Medical Equipment (delivered to the home) such as pulse-ox machine, oxygen machine and suction machine

4)    Medicine – delivered to the home

5)    Medicine compounding (they have a special pharmacy they use that “compounded” or created the medicine in the form we needed it, which was typically suppositories)

6)    In-home therapies (OT, PT, etc)

7)    Grief Counseling (for us as a couple and the children separately)

8)    Grief Camp during the summer (for the children)

9)    Social Worker

10)  Volunteer services (they have volunteers that will do a variety of things: make blankets, make stuffed animals out of your loved one’s clothing, play music, etc)

We were fortunate that Dylan was not in and out of the hospital a lot, which made the financial/insurance part much less complicated.  We made the choice to use Hospice because we wanted Dylan’s life to be lived at home, and we wanted his life to end at home (which doesn’t have to be the case, just because you use Hospice). 

C)    State Sources:   Early Intervention Programs – State programs are widespread.  Search your State government’s website for either “Early Intervention” or “Department of Human Services”.  They will often provide in-home therapy and services for children under age 3.  In Tennessee, children become part of the school system at age 3, and services will then change. 

D)   Federal Sources:  We are not aware of any, but have not done extensive research in this area. 

E)    Handicapped Services – You can get a Handicapped Parking Placard for your car.  There may be other support services in this area for which your child may qualify. 

F)    Nursing or childcare grants/organizations – It may be possible to obtain ‘internship’ type programs with local nursing schools where workers will come to your home at no (or minimal) charge in order to gain experience and/or college credit.   Nursing schools are also a good place to try to find qualified childcare or just assistance in caring for your child. 

G)   Kaden’s Kisses organization - - which was established through Hunter’s Hope, is an organization that helps families that have been left with a financial burden after the loss of a child.

H)   Respite Care:  See the section of this document Coping With the Disease and Caring For the Rest of the Family, as to why Respite Care is necessary. 
The dictionary definition of respite is:  a short period of rest or relief from something difficult or unpleasant.  The “medical definition” is a temporary rest period or break for caregivers of the ill or disabled.   It is important for you to find some break (respite) from your care-giving duties.  We received some funding for respite care reimbursement from ARC: The DisAbility Resource Center of Williamson County Tennessee.

I)      Social Security Administration – Disability Insurance – Supplemental Security Income (SSI)
“Compassionate Allowances” is a list of diseases that automatically qualify a person for disability benefits.  SSI (Supplemental Security Income) would be applicable for a child, but income limitations apply.  Krabbe Disease is on the list.  Here is an excerpt from the Social Security Administration’s website: 

“Those applying for Social Security Disability benefits often face a lengthy approval process that can drag on for months. Aware of this, the Social Security Administration conceived the Compassionate Allowance Initiative. The goal of the initiative is to identify disabling conditions that, by their nature, qualify someone for Social Security Disability benefits. If a person has been diagnosed with one of these conditions, he or she automatically meets Social Security’s definition of disability. Although having one of the medical conditions on the compassionate allowance list does not guarantee you Social Security Disability benefits (you still have to be an insured worker under SSDI and meet the income restrictions under SSI), eliminating the delay in proving that your medical condition meets Social Security’s requirements under its Blue Book listings and confirming its severity speeds up the applications process considerably. Confirmation of a disabling condition under this initiative can allow you to be approved for disability benefits immediately, sometimes in a matter of days. This is important, as these diseases are often aggressive enough to cause death in a relatively short period of time, although not all of the conditions on the list are necessarily terminal.

J)     Other places to seek support:

1)    School system

2)    Pediatrician

3)    Non-profit organizations active in your community or state

4)    Church (even if you don’t currently attend, the church often has a mission to provide for physical needs of the people).  

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