Hearing Day - Four Years in the Making

Senator Jones and Committee, Obviously I want to thank you all for hearing our testimony today in support of Senate bills 784, 785, and 786. Senators Jones, Warren, Bieda, and Brandenburg, thank you for introducing these bills and allowing for them to be heard. If I may, I’d like to take a few minutes to share with you all about my son, Willy, and the journey that has brought us to you today.

My name is Dawn Krause and I am a lifelong Michigan resident from Saline. I am married and have three children. I work as a research administrator for the University of Michigan Medical School. I received two degrees from Michigan State; one in Eastern European History and one in International Political Science. Willy’s father is in law enforcement and his step-father is a professor at Central Michigan University. Willy’s step-mother is a teacher with a master’s degree in social work. I give you this background only to explain how no life experience, no job or education could ever prepare you for what we have gone through.

My middle son, William (we called him Willy), was born in March of 2004. My pregnancy with him was uneventful as were his first four months of life. In July of 2004, in the emergency department at the University of Michigan, after two harrowing ambulance rides, Willy was diagnosed with lissencephaly. I remember looking at the physician who diagnosed him and thinking, “Well, ok, give us a prescription. Certainly there’s a drug that will fix this.” And I remember him looking at me and saying that this situation wasn’t like that. It was terminal and Willy probably will not make his second birthday.

Without getting bogged down with too many medical details, lissencephaly is a neuromigrational brain disorder that occurs in the first trimester when the brain fails to create the gyri that gives you motor skills. Willy’s brain was smooth like a bowling ball. We were told to take him home, be prepared to deal with complex seizures and respiratory issues and basically try to keep him comfortable while we waited for him to pass.

The early years were very difficult. We were learning how to take care of this very sick baby and doing everything we could to keep him alive. Every time he was sick we thought it was the end. Mott Children’s Hospital became our second home. The stress of the entire situation threatened our entire family, the sanctity of our household, the stability of our finances, and the emotional base for our other two children.

Sometime soon after diagnosis, a representative of the Jackson County Early On program contacted us to offer services. Services? My ears perked up. What did they mean, services? I’ve always likened the teachers and therapists from the Early On Program as knights who ride in on fancy horses carrying a big sword to help us do battle. We enrolled Willy in Early On. From shortly after diagnosis until age 3, Willy was assigned a team of experts who each came in once a week to assist and teach. He had a teacher, an occupational therapist, and a physical therapist. He started to have longer periods of improved health. He started to learn to do things we were told he would never do. They opened up a new world for us: a world where special education meant a life for Willy with goals of his own.

World Health Organization states that a disability is “a continuum, relevant to the lives of all people to different degrees and at different times in their lives,” a “universal phenomenon” and a “natural feature of the human condition.” We deny individuals their dignity -- the right to be valued, respected, and treated ethically -- when we refuse to accept disability as a natural feature of the human condition by denying access to education and being part of our community in the most fundamental of ways.

When Willy turned 3 (who said he wasn’t going to make it to two anyway!), he was able to attend school full-time as his health allowed. He was a student at the Lyle Torrant Center in Jackson. Words cannot adequately describe how amazing this place is. They had teachers and therapists and a pool. They had music therapy and adapted physical education. They took the kids on community outings to get them out. They had equipment at school that we could never have afforded on our own. They had specialists there who had studied how to educate and work with this very special population of students. They focused on what he could do not what he couldn’t do.

Sometimes their goals were lofty which made us laugh. We joked that we really just wanted him to poop and breathe. (Constipation caused a lot of problems for Willy and usually wound us up in the hospital.) They wanted more for him. He learned to roll over. He learned to hold his head up. He learned to make choices with his eyes. He enjoyed swimming in the therapy pool which was not only fun for him but good for his muscles which kept him healthier. They did crafts. They listened to stories. He worked hard during therapy sessions and came home exhausted. He was healthier when he was in school because it is a much healthier lifestyle than just lying around at home. After years of working with his occupational therapist, he learned how to hold a toy on his own.

As he learned, we learned. As he grew, we grew. We became very close with his teachers, therapists, aides, and nurses. We became more confident in our skills as special needs parents. We learned how to focus on quality of life versus quantity. Life was good. Life seemed normal again even though it was anything but.

Unfortunately, lissencephaly, as many of these types of disorders are, is regressive. This means Willy’s performance peaked at a very young age and started to decline slowly every day thereafter. It was a slow regression and we had many good years. But his disorder, which with it brought severe seizures, pulmonary issues, and the worst culprit, cerebral palsy, was slowly destroying his muscles. Any skills he had (swallowing, holding a toy, rolling over, holding his head up, making choices with his eyes), were slowly going away. Eventually we had to put a feeding tube in so that he could get enough nutrition. Your muscles control everything; how you eat, swallow, breathe, urinate – everything. His respiratory muscles were especially damaged from chronic pneumonia.

Even so, the educators and therapists working with Willy just kept changing the goals. Adapting. Meeting him where he was at. He continued to hit goals and milestones and then he’d regress and lose some function. We’d celebrate the goals, no matter how small, and grieve the losses. For the most part, he continued to be a happy little guy, enjoying music, the pool, his classmates, snuggling, and his iPad. He went to Washington, D.C. in 2014 to advocate for a rehab technology bill that was eventually signed into law. We never stopped. While he continued to do his thing, I sat on boards and became an advocate. I started a 501c3 with the Chair of my department (who was Willy's doctor) to help families of children with cerebral palsy. Willy kept at his education with gusto. We lived.

Willy’s lung function started to go seriously downhill somewhere around 2009. We wound up in an on-again, off-again cycle of hospitalizations that lasted over three years. Usually he’d start with a cold or sniffle and the next thing you know we were in the intensive care unit and he was fighting for his life.

Up until the summer of 2012, we had always maintained a very pro-active and aggressive approach to his medical care. Even though he had been given a life expectancy of two and he was now 9, his life had been much better than we ever thought it would be. When the hospice and palliative care teams visited us during hospital stays we promptly sent them away. We knew Willy had a lot of life left to live.

In late fall of 2012, Willy had been having increased breathing and swallowing issues due to the continued regression and obstructive sleep apnea. We had an appointment with Dr. Charles Koopman, a seasoned and well-respected ear, nose, and throat physician, to see what our options were. The options presented to us were not good. All of them required some form of complicated surgery that he may not even recover from to begin with.

Dr. Koopman was the first physician to really make us think about where we wanted to go for Willy in terms of quality versus quantity. Up until now, the choices had been easy. But it was changing and changing fast. That night when we got home, I couldn’t help but thinking it was the beginning of the end. There were no more procedures or life-saving surgeries that were options. His regression reached that crucial juncture where we realistically could not do more to keep him alive without sacrificing his quality of life. It was at this point I realized that Willy was “terminally ill but not actively dying.” This phrase would become the basis for all the decisions we made from then on and we would adjust our decision-making process accordingly.

In June of 2013, Willy was hospitalized for increased seizures and secretions. This wasn’t something new. His medications would routinely lose their efficacy. We were always looking for the right combination of medicines that would help him but not drug him out. (Again, quality of life.) During this hospital stay, palliative care and hospice services were again presented to us. Not only had we tried everything we were willing to try, but Willy had gone downhill quite a bit in the previous year. Willy’s father and I decided it was time for us to have the talk about where we go from here and whether or not it was time to consider palliative or hospice care.

The Affordable Care Act provided for pediatric hospice patients to also receive specialty physician care in cases like these. These patients require comfort measures that hospice provides and also curative care that comes from specialists. We knew this would be the perfect combination of care for the next few years of Willy’s life. If we could have designed perfect care for a very imperfect situation, this was it.

With our goal being the best quality of life possible for the time Willy had here, (keeping in mind he was terminally ill but not actively dying), we decided to go home from the hospital on hospice services. Willy would still be able to attend school. We would have support for the first time ever (we always made too much for any assistance or home nursing), by having supplies delivered like oxygen, medication, diapers, and comfort medicines. If Willy became ill, his hospice physician, Dr. Ken Pituch who is here with us today, would come by and assess. If Willy took a turn for the worse, we could elect to do a round of antibiotics and use the comfort measures we had at home, or we could change directions and head to the hospital for more aggressive treatment. We were also still able to see our physiatrist and neurologist for specialty clinic care.

We worked with a team of professionals to design a medical care plan which included a “do not resuscitate” (DNR) order. The decision to add a DNR to Willy’s care plan was no less agonizing just because we knew it was the right thing to do. Taking all the facts into consideration we knew it was time. Every time Willy was sick he came back to us a different boy; less of his old self and more tired and uncomfortable. We knew that should something happen where his heart stopped beating, we would not want resuscitation for him. We would want comfort measures. We would want him surrounded by people who love him, whether at home or at school, holding his hands and staying by his side singing his signature song “You are my Sunshine.” Once we made this decision, we never looked back but hoped he would have many more years with us still.

At the time, Willy was attending Haisley Elementary in Ann Arbor Public School District. We had a team meeting whereby his DNR became a part of his school medical plan. The teachers, aides, therapists, and school staff all knew about his DNR and knew what to do should a catastrophic event occur on their watch.

The next school year we decided to transfer Willy to High Point School in the Washtenaw Intermediate School District because they have a more robust special education program and more services available for Willy including a therapy pool. We were sad to leave Haisley but again, keeping with the theme of quality of life, we knew it was the right decision.

When we found out that WISD would not honor his DNR we were crushed. We would have been devastated if something had happened at school and resuscitation was attempted. I am sure this is a very difficult concept for most people to understand. But in a world where children were terminally ill, the world that we lived in, this was normal. To us, it was not acceptable that school district lawyers could overrule our decision with regards to Willy’s DNR. After years of having Willy’s teachers and therapists be such a close part of our life and seeing the joy in his face while at school, we were now faced with a decision – let him stay in school and hope nothing happens or take him out of school.

We decided to still send Willy to school even though we knew they would not honor his DNR. We knew the pros outweighed the cons. Willy loved school. He loved the pool. He needed his peers and the stimulation it all offered. It was his legal right to have an education. However, we did start a lawsuit against the district to honor the DNR. The suit was still in progress when Willy passed in 2015.

For Willy and kids with these regressive disorders, the “end” can be years. In the meantime, they have to live. They deserve an education. They deserve a life of their own with an education program designed for them. This is a right under the Free Appropriate Public Education (FAPE). FAPE is an educational right of children with disabilities that is guaranteed by the Rehabilitation Act of 1973 and the Individuals with Disabilities Education Act. The fact that they have terminal disorders and may have a DNR should not infringe upon their right to an education. The school districts that serve our state must be consistent in their policies regarding DNR’s. Their policies should not change across a town or a county’s border. Just as you’d write a medical care plan that included an epi pen for a student with a severe allergy, medical care plans for student’s with DNR’s should also be included in the educational setting.

When a parent or guardian reaches the agonizing decision to place a DNR for their child, no one should be able to tell them that the DNR will not be honored. Especially in an educational setting where they have the right to have the same experiences as their peers right up until the day they pass. No child is less entitled to their rights to FAPE because of a diagnosis, prognosis, or a medical order.

Our state’s current DNR Procedures Act says nothing about a parent’s ability to place a DNR for their minor child, nor does it say anything about a DNR in an educational setting. This creates ambiguity and uncertainty for both the parents and the schools. We want to amend that act by adding language that explicitly says parents can place a DNR on behalf of their minor child (who qualify) and explicitly mentions schools as a context in which DNR’s must be respected.

We want to frame this as a win-win; a way to clarify the law so that everyone is on the same page. It is a win-win because we are also willing to add language to the DNR procedures act so that it explicitly says teachers or staff who act responsibly and follow the DNR’s instructions are immunized from liability. We also want guardians to have the same rights as parents where DNR’s are concerned.

This issue is not going away. Medical technology is such that babies are being born who would not have made it to term just years ago. Children with severe birth defects are living longer than ever before. Medical advances are taking people with disabilities further than anyone ever thought possible. Because of this, medical technology and education must grow together. As medicine continues to advance, so must the education that we offer our most vulnerable citizens.

I ask you today to consider our story but please know there are many more out there just like ours. I ask that DNR’s be honored in all educational settings in our great state. I ask that the law is changed to allow medical providers and educational professionals to team with families and write appropriate care plans that are as individualized as the student. Proper protocols and policies will follow so that staff is comfortable and knows what to do. 

Something as important as this, which really comes down to life or death, should be consistent between every educational jurisdiction in Michigan. To my knowledge we are the only state, besides Alabama who just passed similar bills through their Senate, to address these delicate and important issues. I have lived here my entire life and would not be more proud of my government if we could help lead the charge for special education into the future and protect our most vulnerable students.

Please work with us to help make it so.

Thank you.