The Otte's

Here we are sitting at the Capital, and speaking to the Senators. We kept the flash off, as not to disrupt the events, so the pictures are a bit blurry, but we were there speaking for ourselves and families. We were there to support a bill to keep nurses in the homes of kids with severe disabilities, as well as keeping therapy and healthcare for all people with severe disabilities. I learned so much, and could go on and on, but as this journal is already pretty long, I won’t go into all the details, but just cover a few of the bigger moments of the day.

Well, Chrissy, Alexis, Casey, Quinn, and I went to the Capital on Monday, to sit in and talk about the bill / proposals dealing with cutting nursing in the homes of kids with severe disabilities, as well as limiting health care and therapy. The room probably sat a couple hundred people, and as it was a prehearing type thing, we only talked to the senators on the appropriation committee that had 12 senators residing on it. So we might be doing this again down the road for the entire Nebraska Senate. We got there around 1:00 and did not leave until about 6:45. The room was packed full of nurses, therapists, and lots of adults and children and families where disabilities are part of their lives. Many doctors and hospital administrators spoke about how loosing nursing in the homes as well as continued budget cuts would lead to overcrowding in hospitals, health and human services talked about how they have continued to come in under budget and don’t understand why these cuts are even necessary. A couple of personal assistants asked who is going to be liable, when they are not allowed by the state to do trach changes or many things that go along with respitory issues and who will be responsible when the person they care for dies on their watch. A few nurses talked about everything they do to give people with disabilities the best lives possible. There were also many heartwarming emotional stories that were shared, and the senators really did seem to be paying attention and learning right along with me. I was thankful for a couple of parents who had their beautiful kids who have ventilators with tubes and machines surrounding them, right up front, so the senators could see how they got feed through their G-buttons, how they got suctioned, how much care they took, as bells and whistles continues to go off when something was not quite right with them! Those kids did great, as I’m sure they were board out of their minds! I would have been at their age! I appreciate those parents for helping educate the senators. Thank you! We were in the back of the room, since we just got there just in time to squeeze into the room, they had folks after us go into an over flow room next door. Quinn was so good the entire time; she listened to music that Chrissy brought along, as I forgot to bring things along to keep her entertained. Alexis and Casey also did great. Finally around 6:30 Quinn and I got our moment to speak to the senators. A couple of the people right before us had stories that got me all emotional, so I was more emotional then I wanted to be when I spoke, but I did ok. Quinn decided to have a big coughing moment, while I was speaking, so I had to stop and wait for her to get herself under control. I hope that made an impact on the senators. Chrissy and I both told Quinn that this is one day where she can cough and be as loud as she wanted the entire time, so she talked a bit here and there but her big coughs in front of the senators were as loud as she got.
So here is the speech I gave the senators. I tried to cover just a few points, as I did not want to bore them, and only had 3 minutes to share our story. I have a few things I’ll change around if I speak to the entire Senate, but I think it’s an ok start, as I am new to this whole adventure. So I ask you to keep praying for all these families that truly need nursing in their homes as well as support with therapy and health care, it’s not a luxury to have, it truly is a necessity for so many of us.

So here is my speech that I loosely followed when Quinn and I spoke:

Hello –
I am Susan Otte, I’m an elementary art teacher, and this is my amazing daughter Quinn, she is a vibrant, smart, amazing 5 year old who is in preschool.

I want to focus on keeping nursing in homes with kids with severe disabilities, as well as giving these kids the opportunity for therapy.

A nurse, who is educated and understands the issues my daughter and all kids with disabilities have is what we need. The nurses and therapists who come into our homes help teach us, the parents what to do. We as parents don’t naturally know what to do to help our children be their best. I did not plan on having a child with disabilities, and I had not educated myself to know what to do, however thanks to all the medically trained people in our lives, I have learned how to care for my daughter, and I’m grateful to the therapists and nurses for caring for my daughter.

If I don’t truly know how to care for my daughter, how can I be expected to teach a Personal Assistant Provider, who simply has to be 19 years old and pass a background check. Would you be comfortable watching my daughter with no training? I have many intelligent caring friends, but I am not comfortable leaving Quinn with them, as they don’t have the correct training to care for her, and asking them to care for her without proper training is dangerous!

I have had wonderful caregivers, not nurses, in the past that were amazing, but they did not understand the medical issues my daughter was having and how to take care, and we found that was not good for the care giver, my daughter, or me. Our caregiver did her best and was an amazing person, but she finally had to stop because she was worried something would happen to my daughter and she would not know what to do, and was not willing to live with that kind of guilt. I could not blame her for that at all. Now we have a few different people who are medically educated and understand the medical issues with my daughter and we are all better off emotionally and physically for being in the capable hands of people who understand Quinn’s medical issues.
Currently we have a nurse for Quinn at school, as her school requires a nurse with any child with respiration issues. She keeps Quinn safe and protects her airway, whether she needs to be suctioned, or if her trach gets pulled out. Quinn’s nurse understands when she is under stress or has a cold and how her respirations or breathing will change and how to deal with that. If some of these issues would happen without her nurse present, the ambulance would be called, and I would get a call, I’d take time off of work and meet the ambulance with my daughter, at the hospital for the nurses there to work through Quinn’s respiration issues, not knowing her and her needs. While a trained professional who knows Quinn would have known how to deal with it, in a calm manor while keeping her safe at home or school and preventing a trip to the emergency room.

Financially, having medically trained caregivers, such as nurses, taking care of Quinn saves Nebraska taxpayers money. In the year before we got our current educated caregiver, Quinn was in the hospital over 26 times. After being with our medically educated caregiver, she has only been admitted to the hospital 3 times. If we simply use the cost of the room in the hospital, before being with a medically educated caregiver, the cost of hospital rooms was well over $46,800. While this last year it was less then about $6,000. That is a difference of over $40,000. Educated caregivers, such as nurses have saved Nebraska taxpayers thousands of dollars in hospital trips with just my daughter alone!

So in conclusion, I’m terrified that a personal assistant provider will not have correct knowledge or any knowledge for that matter, of how to care for our daughter. Without a nurse to care for her, we will be back in the hospital numerous times because we have no medical knowledge, which is horrible.
On the other hand, keeping educated nurses and therapists will continue to help our kids with disabilities survive safely in our homes, improving and gaining skills, and saving many trips to the hospital. Our kids with disabilities, no matter what their age deserve to feel safe and secure and we can save Nebraska taxpayers money by staying in our homes with nursing staff rather then spend time in hospitals.

Thank you.