I’m writing you about bill SB1519 proposing that Arizona eliminates AHCCCS and withdraws from Federal funding for Medicaid. As you know, AHCCCS provides over 90% of the funding for DDD (Division of Developmental Disabilities). My daughter, Sadie Mae, would be severely impacted by these cuts. After a completely healthy pregnancy, I delivered a sick baby who wasn’t breathing on January 19, 2010. She had been attacked by the neuro-toxins from the Group B Strep virus and it left her severely brain damaged. Hypoxia at birth only compounded and accelerated the damage. She was put on brain cooling in the Phoenix Children’s Hospital NICU, a new procedure done with newborns who suffer from hypoxic ischemic encephalopathy, and I believe that this procedure saved her life. After being told that she would never even be able to breathe on her own, we decided to remove her breathing tube and ask that the hospital staff do not resuscitate. Miraculously, Sadie lived, but now she faces life with significant developmental disabilities.
Sadie’s major diagnoses are the following:
· Cerebral Palsy – with hypotonia in her limps, and distonia in her trunk
· Cortical Visual Impairment (visual impairment related to how the brain processes, not related to the eyes themselves)
· Microcephaly – due to the damage in her brain, her occipital lobe did not develop therefore failing to expand her skull and leaving her with a smaller-than-average head.
· Insomnia – due to the lack of seratonin her brain makes, she doesn’t sleep
· GERD – spasticity of her muscles causes Sadie to reflux several times a day after eating
Sadie also does not like riding in the car, which makes it very difficult for us to go anywhere as a family, or for me to get anything done during the day. She is nonverbal, and her limited ability to control her muscles makes it hard for Sadie to communicate what she needs. Sadie also processes pain differently than you or I and it’s very hard for her to understand teething, reflux, or growing pains. She has a very hard time acclimating to a new situation and becomes very irritable and inconsolable, we hesitate to take her anywhere or introduce her to any new environment. Because of her sensitivity she also will only nap while being held.
Cutting AHCCCS (and funding for DDD) would not only impact my family, it would also impact all those working to support my family. Sadie receives the following services through DDD and Arizona Long Term Care (AHCCCS). If we were to lose services the following people would also be financially impacted and possibly lose their jobs:
1. Sheila L., Vision Therapist-Foundation for Blind Children
2. Jessica D.., Occupational Therapist- Arcadia Therapy Services
3. Tami H., Physical Therapist-Kidability
4. Melissa L., Music Therapist, Neurological Music Therapies of Southern Arizona
5. Nancy P., Speech Therapist, Family Partners
6. Zahira R., Respite Provider, CASS
Sadie also sees the following doctors: ophthalmologist, neurologist, orthopedic doctor, GI doctor, and primary care doctor.
In order to progress physically and cognitively Sadie needs these services. In order for my family to continue to be hopeful for the future and for my marriage to stay strong we need these services. In order for our economy to improve we need to keep these service jobs available to therapists, respite, and habilitation workers, etc.
To deny young minds the chance to thrive will cost us as citizens for the rest of our lives. To nurture and help them match their wonderful intellect with their bodies creates individuals that can go on and be productive.
We all understand that we need to find ways to change and correct certain aspects in the government. To just strip and take away vital services and destroy families cannot be a solution to our problems.
Here are some more links about this bill (and you are welcome to do your own google research!):
We appreciate any help you give in this matter as it is very important and directly effects our family.