We would like to personally thank you for your support of the Autism Insurance Reform (Senate Bills 414, 415, and 981). The Michigan ASD community has been enhanced by your hard work. Even today, we read about your work to build awareness by naming the Grand Traverse Lighthouse as Michigan’s first autism-friendly destination.
Your demonstrated commitment to improving quality of life for ASD families is why we are looking to you today to assist us—ASD parent to ASD parent—in navigating the existing Community Mental Health System. While we have tried to meet the challenges of raising a child with autism head-on, we are floundering in a system that seems designed to promote reactivity. Our family is in desperate need of a viable long-term solution.
When I (Jamie) started drafting this letter, I was sitting in a room with my sleeping first-born son. He was lying on a mattress on the floor, flanked by gym mats in Room 6 of the Sparrow Hospital Pediatric ICU because his bed had been removed for safety. I had seen him kick a hole in the hospital room wall, damage a monitor, lose access to metal silverware, and staff recoil from him.
He had spent several days medicated to the point that he could barely stand without assistance, and my heart was breaking. For 12 days and 11 nights he languished in that room, awaiting a transfer that most members of his treatment team didn’t really think would come. The entire time we questioned where the dignity was for him.
On May 27, 2003, Braden was identified as Autistic Impaired under Michigan Special Education Rule 340.1715. In the nine years since that day, we’ve followed a journey that has included biomedical, medical, and therapeutic intervention. We have a long history in seeking out the best options available to him. Our goal remains unchanged.
Perhaps even more challenging than rearing a child with ASD, or any special need, is raising that child’s sibling(s). Though it is difficult to receive less attention or to feel like your needs are less important, it is well documented that siblings usually turn out to be very kind and compassionate people. Our 8-year old son, Garret, is not an exception. He is a very bright boy who, until a recent relocation, attended a Gifted and Talented Magnet program.
We are blessed beyond measure to have these two very different, very special boys. But it is these boys who have brought us to a frightening crossroads. At almost 12, Braden is 5’3” and 121 pounds. At 8, Garret is 4’4” and 61 pounds. Braden’s autism causes frequent outbursts and aggressive behavior that has become unmanageable. Our previous requests for help have largely centered on trying to keep Braden safe; we are now facing the very serious reality that we cannot keep either son safe.
911 calls, hospitalizations, and placements document the public safety risk Braden has become as he’s grown. School data and emergency intervention plans support that conclusion. What isn’t documented as well is the private risk that he has become within our four walls.
Braden now sits in Henry Ford Health Systems’ Kingswood Hospital, where a psychiatrist is starting a trial of Lithium. In both hospitals, he has had a 1:1 staff person around the clock. The social worker there is discussing discharge and planning for his return to our family home. CMH has assured us that 24-hour staffing in our home is not an option, nor is outside placement. While we wholeheartedly agree that the ideal situation for a child is to remain in their family home, Braden has repeatedly shown us that is not the ideal situation for him.
As you well know, Autism Spectrum Disorder is based on a need for routine, for consistency, for predictability. The crisis intervention model promotes disruption of routine. In the 3 years that we have been stuck in the cycle, there has not been continuity of care for Braden. We’ve attached a more detailed history of our journey here.
We have often asked ourselves, “What could we have done differently?” Today, we ask, “What can we do differently?” We are being asked to recommit to a cycle that throws our family into chaos. A 911 call triggers an ER visit, which cues psychiatric placement in whichever facility can accommodate Braden for a period of time until “stability” is reached. Braden is then discharged and returned home as if none of these things have happened and all the while each member of the family is struggling to cope with what has happened.
We strongly feel business as usual is not the appropriate course here because it brings no resolution. As long as Braden remains in our family home, we remain unsafe. The security we try as parents to provide remains out of reach. Our children remain in danger.
All other less restrictive alternatives to placement outside the home have been exhausted. This social service agency, the Michigan Department of Community Health, more specifically Community Mental Health Services, must follow through and provide our family with the quality of life it was designed to ensure. If ever there was a case for MDCH to fulfill its mission to “protect, preserve, and promote the health and safety of the people of Michigan with particular attention to providing for the needs of vulnerable and under-served populations,” it is this one. Four Michiganders wait for a lifeline.
Braden’s dignity must be maintained and his strengths must be honored. Garret’s safety and success must not hinge on the instability of his brother’s condition. Jamie must be safe from physical harm and psychological distress. Alan must be honored as man who works to support his family. We are not a family looking to abuse the system, simply a family looking to utilize the system. We believe it is in place and tax-supported to intervene in situations like ours.
We are writing to you to share our experience in raising a child on the Autism Spectrum in Michigan. We hope that this is not the typical experience for members of our community, but we fear that it is. We understand that there are no simple fixes and that nothing can change the path we’ve traveled, but we believe that sharing our experience can affect change for the families who come behind us. We also believe, with your assistance, we can change the future for the four of us.
Sincerely,
Alan and Jamie Lewis
