My life changed in the time it took for me to answer the phone and hear the following words, “Kacie, it is Staci. I have some news for you, can we conference in John?” I reminded myself to keep on breathing and calmly responded, “Sure, just give me a couple of minutes because sometimes the technology works against me.”
My nervous fingers found John’s number on my frequently called list. When he answered, I tried not scream but I excitedly shared, “Staci from the County called she wants to conference you into a call because she has some news for us – I think we are going to find out if Caroline was awarded the Waiver.” John calm as ever responded, “Let’s not speculate, add her to the call and we can find out.”
Staci was in fact calling to inform us that Caroline had been awarded the coveted SELF Waiver which included Medicaid coverage and some funding for things like therapy, respite and equipment. I am not going to go into detail about how Caroline’s number finally came up but I will say that I am happy it did. This Waiver has the ability to improve the quality of life of the entire Buzzard family.
Many of the medical expenses that have not been covered by our private insurance will soon be covered by Medicaid; saving us tens of thousands of dollars, each year. Medicaid coverage will limit the number of times we have to decide to between providing this medically necessary treatment or that medically necessary treatment. I will never have to call a doctor’s office and beg for medical grade formula again because we cannot afford Caroline’s feeding tube formula (that the insurance company agrees is medically necessary to sustain life but does not cover it because Caroline does not have an anatomical deformity requiring the feeding tube). We will no longer decide how long Caroline can float without private speech or OT, after our funds have been exhausted. We will be eligible to have a nurse in our house 14 hours a week to help with Caroline’s g-tube so if we want to change her feedings to overnight we can safely do so.
The Waiver allows us to self-direct funds that will improve the quality of Caroline’s life – and our family’s to some extent. Therapy for the family will be covered by the Waiver and let me tell you we need it! Ha! The Waiver will help pay for things like music therapy, swimming lessons, therapeutic horseback riding lessons, sensory equipment, security equipment (alarms on doors, privacy fences, etc). We will have to choose how to use the money because of course our needs are greater than the funding but every little bit helps.
When I finally realized Caroline was going to receive a Waiver, I was overwhelmed. For the first time since I was told (6 week early), “You are going to meet your daughter tomorrow, I can’t fully tell you what to expect other than she will be small and her facial features will likely be underdeveloped,” like I might be able to make ends meet.
The journey that got us to receiving a Waiver was emotional and taxing. I realized how little support there exists for parents who have kids with special needs. The movement to keep kids out of institutions has almost eliminated any sort of reliable, institutional support for kids with severe special needs who are able to walk. I will do everything I can to keep Caroline in our home but on the rough days, I have asked about my options and was informed there are none. Even when I expressed concern about Caroline’s safety it was suggested that I lean on my family and friends because our family income was too high to qualify for assistance.
I firmly believe whenever it is possible children with special needs should stay with their family but I also believe that society has a responsibility to provide some level of support to ensure the preservation of the family unit. Caroline’s care is exhausting, emotional draining and expensive these stressors impact the emotional and physical health of our entire family. This is not to say that we don’t love Caroline just as she is or that we would change anything about her – it is saying with the level of care she requires we need help.
I am thrilled that we are in the process of receiving support that will ease many of the stressors that have been slowly breaking our family, I am sad because I know there are thousands of families like ours who will continue struggle waiting for their number to be called.