WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Monday, March 12, 2012

Mito and CPS

This is a topic that has been on my mind a lot lately.

It sure seems like the Mitochondrial population is often targeted by Drs and CPS and the only explanation that explains the higher then normal percentages is lack of education. Which means I need to make some more ribbons and work a little harder to reach out and help as many as possible to understand that Mitochondrial disease is real. It is genetic and cannot be made up,or fabricated. IT is most often progressive, and can be terminal.


MitoAction has a section on their site called - Munchausen by proxy Accusations in Children with Mitochondrial Disease.


I found this Advocacy group in Austin TX and they seem to have some experience with Mito Clients- Parent Guidance Center.

Here is the a Guide that the Parent Advocacy Center recommends reading if you have contact with CPS- A Families Guide to the Child Welfare System

Finally this link- National Coalition for Parent Advocacy in Child Protective Services.


Another resource may be through your local/state/National Homeschooling websites. Unfortunately, despite Government and University research that proves Home Schoolers are actually academically more successful then their public school peers,better prepared and more successful in College, and socially and emotionally often healthier then their public school peers, the home school population has often been a target of CPS or the school districts. Many of the home school websites provide links to other advocacy and guides on what to do if you are being unfairly targeted.


With Abby approaching 17, and with a clear history of academic accomplishments in College, I would hope this isn't something we have to deal with- so why my interest? Well, considering we both have home schooled and have a child with Mito, the social impacts of both populations are clearly part of our lives. Frankly, it angers me to hear of either population being unfairly targeted because folks are uneducated and we happen to have a system that refuses to self educate and stay up with the science. I haven't found statistics from CPS yet that would give me any numbers of how many Mito families are being investigated in Houston, but based on what I am reading and hearing from Drs.,advocates and families, Houston and TX in general seem to have a unusually high number of false allegations. Again from what I am hearing, it is staff at our hospitals and schools that report to CPS more then anyone else in these cases.

Although I am sure that abuse occurs in all populations of children, it is statistically IMPOSSIBLE that being born with a genetic disease would make a family at higher risk. Yet, from the numbers of CPS investigations I am reading about, statistically if your child has Mito you are more likely then a child without to be investigated by CPS. The impact of being falsely accused causes terrific emotional and social scarring.

Today, home schoolers are still targeted, but far less then 10 years ago- because finally, the rest of the world has become educated and recognizes that home schooling can and usually is, a sign of a healthy family, not a dysfunctional one. But it took years of brave families making the effort to educate the masses that it was a healthy choice for their family.

All of us in the Mito Population can help to stop the unfair targeting of Mito families- we must continue to be diligent in spreading awareness.

Print some basic flyers or business cards with links to UMDF and MitoAction- share them. New Drs, PT and OT's, Teachers, friends..I have seen this year a lot of students creating projects that capture the many different faces and presentations of Mito- I am so proud and grateful to each of those students.

With awareness, Mito families will be better understood, and hopefully no longer a target of protection agencies simply because their disease is not understood. Too many Drs. still do not understand that Mito has THOUSANDS of variables and presentations. We can help them understand through awareness.

Finally, I know CPS is a necessary organization. They help thousands of children and adults each year that without CPS would be in danger of extreme abuse. I support CPS and know they are often overworked and underpaid. It is the policies that have been set in their system that have likely caused the disproportionate number of investigations in the Mito World. I am hopeful that CPS is recognizing this as a problem in their organization and are working to re write their policies- I know they are only doing their jobs, but if their own policies are causing great harm to children and families, then clearly those policies need updating,and rewriting.

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