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Thank Goodness for the Sarah Lopez Medical Waiver
Doctors, doctors, doctors. Lately I seem to see more medical professionals than I get to see friends. I have to say that we do have some fabulous doctors but still doctor's offices are just not that enjoyable. Going to doctors seems to be a common occurrence over the years with my son Austin. This past month, I have been adding to the appointments. Just two weeks ago, I underwent my first surgery.

I have discovered that I do not make a good patient. I do not like being a patient. I do not like having something wrong with me. Ok, I am a big baby, but I am used to being a caretaker. I do not like being the one to need taking care of. It is an unnatural position for me to be in. I think many women feel that way. Many of us are natural caretakers, it's a role we fit into easily, a huge part of motherhood. So this has been a hard time for me. I have not been able to do many of the tasks that I usually do daily. I have needed help in most aspects of caring for my son while I am healing. There have been a few benefits like my husband doing more dishes!

I want to explain about the Sarah Lopez waiver (now called the Missouri Children with Developmental Disabilities waiver) which is the main reason I was able to have the surgery I needed while having a child who has a severe developmental disability. Many states have a medical waiver for children with critical care needs and the parents of Sarah Jian Lopez helped get this waiver started in the state of Missouri. This waiver is critical to families of children with severe disabilities and allows for supplemental Medicaid and nursing care. This waiver has helped us to care for our son properly in our home and community. According to the Missouri Department of Mental Heath - "The Sarah Jian Lopez Waiver is a Medicaid model waiver administered by the Division of DD since 1995. Medicaid guidelines require parental income and resources to be considered in determining a child's financial eligibility for Medicaid when the child lives at home with the parents. This requirement, called deeming parental income to the child, is waived for children who participate in the Sarah Jian Lopez Waiver. This waiver provides participants eligibility for all State plan Medicaid services in addition to waiver services. To be eligible for this waiver, the child must: Not be eligible for Medicaid under regular guidelines; be under the age of 18; live with their parents/family; meet financial guidelines; be determined to have a permanent and total disability; be eligible for ICF/MR level of care; and be at risk of needing ICF/MR services if waiver services are not accessed. No more than 200 children can be served in the Sarah Jian Lopez waiver at any one time. (Source Missouri Department of Mental Health - dmh.mo.gov/dd/progs/waiver/sjlmw.htm)."

I fought hard to obtain this waiver for my son. We were on the waiting list to get this waiver for over 3 years. It was really starting to take its toll on our family - financially and emotionally. The expense and the time needed to care for a child with severe disabilities is quite extensive and all encompassing. I wrote letters to the Sarah Lopez waiver committee, I visited with our lawmakers in Jefferson City and I talked to as many people as I could about my son needing this waiver program. I also took a class called Partners in Policymaking (www.partnersinpolicymaking.com) which taught me more about advocating for my child.

The day we got the news that we were finally receiving a slot was almost as good as winning the lottery. A massive weight was lifted from our shoulders. The hard thing is that when you do get a slot you know there is another family out there who also desperately needs it. Some states have medical waivers for all children who qualify. One of my biggest dreams is that one day all who desperately need the waiver will be able to receive it. It has become a passion of mine and I plan to advocate for this. My hope is that Missouri will become a progressive leader in properly caring for individuals who have severe disabilities. I understand that funding is very hard, especially in this current economy. But is it more cost effective to keep children with developmental disabilities in their homes than to provide them with institutionalized care. This waiver requires that the parents provide insurance and the Medicaid is secondary. The waiver is also about 60% funded federally and about 40% funded by the state. The cost to the state is minimal considering the cost of institutional care. It is a win win for the state and for the family.

I am proud to say that the Missouri government did just approve more Sarah Lopez Waiver slots! So soon more families should be coming off the wait list. This is a huge development and I want to thank all those who made this possible. And very importantly I would like to thank the parents of Sarah Lopez who were instrumental in bringing this medical waiver to Missouri. It has helped so many families.