We are a typical family with a mother and father and 2 beautiful children who have special needs. My husband works a full time job and I work part time and attend graduate school full time. Our daughter’s pregnancy was going along perfectly until the day she was delivered by emergency C-section at 28 weeks, 2 hours after my baby shower on September 17, 2005. She was 1 pound 6 ounces and 11 inches long and very sick upon birth. Makenna was transported to Riley Children’s hospital 45 minutes after her birth, as that was the soonest Riley or St. Vincent could get to her in. She was in the neo-natal intensive care unit for 87 days with numerous hurdles to overcome. Due to her extreme premature birth she endured many complications during her stay in the NICU. Makenna had 2 brain cysts, a level 4 brain bleed, infections, failure to eat orally, just to name a few of the complications. On December 9, 2005 we took our 5 pound miracle baby home, all hooked up to wires and tubes, but we were taking her home. The NICU nurses trained us to feed her through her nose tube, to check her oxygen levels, be prepared for monitor alarms due to slow heart rate, shallow respirations or increased heart rate and difficulty breathing. We had never done anything like this but she was our child and we were taking her home to care for her. Never did anyone mention a nursing or rehab facility and honestly I would have thought they were crazy to mention putting our precious angel into a “home”. 2 weeks after being home Makenna had respiratory failure due to a malfunction in her home oxygen set up. After being transported by ambulance back to Riley and observed she was released 2 days later. Back home again in the comfort of own home as a family we took care of Makenna. Around the clock we were replacing her nose feeding tube, baths, many medicines, monitoring her oxygen levels and her respirations, and attending so many doctors’ appointments. On December 26, 2005 I noticed Makenna wasn’t acting right and had a sense something was very wrong. My husband and I drove to Riley Children’s hospital where Makenna ended up in full cardiac arrest as we entered the emergency room department. As the doctors and nurses took her from us and began working so quickly to bring her back to us, my mind went blank. Looking back all I could think was she was our little miracle baby and what went wrong. They stabilized her and transferred her to the pediatric intensive care unit where we were told she was on 100% support and there was nothing else they could do for her. Little 5 pound Makenna had to work on her own to survive, all we could do as her parents was sit, wait and hope. After spending 30 scary days in the intensive care unit with a very sick baby, we were able to take her home once again. The next year went fairly smoothly for us. What people don’t understand is what “fairly smoothly” means to us. Fairly smoothly means limited ambulance runs, ER visits, no more cardiac arrest statues, surgeries and near brushes with death for our little miracle baby. What our year did consist of was 4-8 doctors’ appointments a week at Riley Children’s hospital, 6 in home therapy visits per week at an hour a piece, coordinating schedules for doctors appointments, therapy appointments and medical supply delivery schedules, attending support groups, finding funding outside of our private health insurance to help cover the cost of this million dollar baby, amongst other things.
In September of 2006 we found out we were expecting again, we were thrilled. Due to Makenna’s surprise early arrival the doctors wanted to double check this pregnancy to make sure all was ok. At about 14 weeks the doctors noticed some possible issues and suggested we have an amniocentesis. At 19 weeks we learned our next buddle of joy was to be a little boy who had Trisomy 21 or Down syndrome. We were shocked at this news as I was fairly young (26) and very healthy. Maison was born on May 4, 2007 a happy and healthy little boy. After a short hospital stay Maison came home and we were finally a family in our own home. Times were busy and schedules were maxed out. My husband worked full time and took on any additional work he could get all while I stayed home with these two miracle babies and managed the house and their busy schedules. Now we had 2 small children with a host of doctor’s appointments and at times we were up to 10-12 therapy visits a week with both children. We carry private health insurance through my husband’s large group employer but with lifetime maximums and limited therapy visits per calendar year it wasn’t enough. We learned due to Makenna’s G tube (stomach feeding tube) she qualified under the Aged and Disabled Waiver program as medically fragile. We felt so blessed to have this additional resource to help our family out as we were covering all areas for these two special children. Makenna’s feeding supplies (special formulas, calorie boosters, G tube kits, syringes, feeding bags, feeding pump, etc) run over $1,800 per month. This doesn’t include all the co pays, medication refills, travel time, gas, loss of work to sit at doctor’s appointments, and other basic expenses to care for their needs. After Makenna was awarded her spot on the Aged and Disabled waiver and she was stable we started using respite nursing service through our home health care company. The respite allowed for a “break” for myself and our family as a whole. I could grocery shop without monitors and oxygen tubes, feeding pumps and the worry of Makenna getting deathly sick due to simple colds in the environment.
Today Makenna is 5 years old and Maison is 3 years old. Makenna still has her G-tube and has the Aged and Disabled waiver due to her status as medically fragile, while Maison is on the Developmental Waiver waitlist. I am told the Developmental Waiver waitlist is about 8 years long as it stands. My husband and I work hard to care for our children on our own but sometimes you can only do so much and need some assistance. Without the waiver for Makenna she would max out her therapy visits for the year in only a month, her feeding supplies would send us into a deep financial hole and without her nursing services my husband would not be able to work and I would not be able to hold a part time job and/or go to school. Makenna is unable to go to a typical daycare or childcare setting due to the risk with her g tube and her skilled needs.
As a parent with a child on the Aged and Disability wavier and a child on the Developmental waiver waitlist I see both sides. We are thankful for Makenna’s current placement on the Aged and Disability waiver and are cautiously optimistic that our son will one day be awarded a spot on the Developmental waiver.
The Medicaid waiver program is a valuable program to families with children and adults with disabilities. An average family income of $50,000 may be adequate for a family of 4 with 2 typical children, but imagine having the same income and 2 special needs children who financially require so much more. The Medicaid waiver program allows families to work and provide for their children vs. being unemployed and taxing the welfare system instead. The services we receive from my daughters waiver allows us to give her all the services that will help her reach her full potential as a human being.
Every parent wants their child to have the same opportunities that other children have. Why are my children considered a “burden” to you or our society? My children bring so much joy and happiness to our family and our local community each and every day. I would never consider putting them in a rehab facility or a nursing home because it’s more “cost effective”. Would you put your child in a nursing home to save money? Children belong at home with their family in a loving and nurturing environment. It’s simply the right thing to do.
Tuesday, April 26, 2011
Impact of 1001 on One Family (14 of thousands)
FV Indiana members are sharing what the impact of proposed changes to Medicaid Waivers will be in their lives. We share their stories, and encourage each of you to continue contacting your Legislators.