The McDonald family story:

You might have seen my family on "The Today Show" or the MSNBC website in recent weeks talking about this issue.  Here is a picture of our wedding in the backyard of our former home.  I have a wonderful daughter, Kyla, who means the world to Brian and myself.  She has diagnoses of Bipolar, High Functioning Autism, Celiac Disease and others in process of being diagnosed.  We tried to get care for her in the public sector and we were denied because Autism is a developmental disability and there is limited coverage for behavioral health.  We wanted to get her into the state-run Developmental Disabilities system which is where all the services are, but that system is geared to keep children out (Too old at age of diagnosis-age 9- and considered too high functioning by their criteria).  Our only option was to qualify for the other state-run system, the Behavioral Health system. 

Because of something called the "Katie Beckett" waiver, family income doesn't count for the Developmental Disabilities system, but it does for the Behavioral Health system.  As a family of 3, we made too much money.   We could either give up custody of her to the state or get divorced so we would become of a household of two, converting her stepfather into "a roommate".  This was done with the full consent of the professionals we were working with.  We had to do something.  There were times where she met the criteria of "danger to self and others".  There were times where I would lock up myself in the bathroom for safety or I wound up in the ER.  Sometimes she hurt herself or others.   She was never a vindictive child, just a child whose brain stopped functioning in moments of extreme stress.  She was very unhappy, and struggled with thoughts of suicide. 

Today, after getting the help she needed, she is doing well.  She attends public high school and has dreams of living an independent life as an adult.   She is very aware that she is different from her peers, that her life will continue to be a struggle, but she is positive and hopeful, and likes to help others.

There are more families like us than most people realize.  I know so many families who have had to make huge sacrifices to get health care for their loved ones.  On behalf of them, here is what we have to say:

1.  No family should have to sacrifice their home for their child's medical needs.  

2.  No family should be forced to divorce or put off marriage because of System qualifications for their children. 

3.  No family should have to live at poverty level for the sole reason of getting health care for their children.   Family income should not be a barrier to children's health care especially when that child meets the criteria of disability. 

4.  No family should be forced to give up custody of their child or have to move their child out of the family residence because that is the only way to get them into the System.

5.  Families should be able to move to other states without fear of jeopardizing their children's services. 

6.  The multiple public health care systems need to be unified or better coordinated and there needs to more consistency/less gatekeeping.  Children wind up in one system and can't get the care they need because it lies in another system.  (for instance, Autistic children in Behavioral Health can't get speech therapy because it's medical.  Other Autistic children on the medical side can't get  Behavior Coaches because it's behavioral health.)

Regardless of what system or systems we wind up with, these things are unacceptable.  Health care reform must address all of these issues, at both a state level as well as a federal one. 

Yes, reform of this nature will cost money.  But it will cost more to let things continue as they are.  With more coverage at the private sector, more families can continue working.  With better coordination of public services, it will allow for greater efficiency, with huge savings.  If we could have systems of health care, both public and private, that consider the families' needs as a whole, we will all be better off as a people.

We need more champions!  Talk to your friends!  Write to your politicians at every level!  Join local and national reform efforts! Get on board!  Sympathy is great, but action is what is needed.

Thank you,

Cinder, Brian and Kyla McDonald

Tempe, Arizona