In 1993, baby Jessie was born with Hyaline Membrane Disease, the same disease that lead to the death of Patrick Kennedy in 1963. Jessie was immediately placed on a heart and lung bypass and all his blood was pumped out of his body and oxygenated. He was a very, very sick baby. Due to his illness and birth trauma, The Warner family started their journey with Jessie receiving intervention services. At the age of two, Jessie was pointing at things and had a few words, but as he aged, the further behind he became in his development. In 1997, Jessie was diagnosed as Autistic. His mother, Sadie, had access to the internet and began to seek out as much information as she could. In 1997, the prevalence of autism was low. 1 in 2500 children were diagnosed with Autism. The current numbers indicate 1 in 59 children will be diagnosed. “I had to learn what Autism was, “ Sadie stated. “I knew no one with Autism and so I had no idea what to expect. I had to look for information of what we were facing.” Sadie believes Jessie was at the beginning of the Autism Surge, the increase in diagnosed cases of autism that has occurred over the past 30 years.
When I reached out to Sadie, I was hoping she could share her experiences of being the mother of an adult child with Autism. I was looking for insight on how the transition into adulthood impacted not only the person with autism, but the family as well. Sadie shared her story and the obstacles they faced as Jessie transitioned from the services provided within the context of public education, as well as the challenges they face now. Further, she shared the unique challenges that the future hold for their family, as she and her husband, Michael age.
Jessie is non-verbal. He needs 24 hour a day supervision. Jessie has the tendency to want to run away.
“Jessie graduated from high school at 21, “ Sadie began her story, “We were unprepared.” Recognizing the impact leaving high school would have on Jessie, Sadie spent that last year seeking guidance and information on what would be available to them after graduation. “Through the school, Jessie was receiving vocational training. He would work at Mark’s Feed Store cleaning menus and setting chairs.” While considered a child, Jessie’s services and interventions were sourced through the school. The daily transportation needs for school and vocational training were provided through the school and, of course, Jessie was being supervised and trained throughout the week during normal school hours. Once those services were completed through graduation, the impact was shocking.
The Michelle P Waiver is a waiver issued through Kentucky’s Cabinet for Health and Family Services which provides Medicaid-paid services to adults and children with intellectual or developmental disabilities, with the goal of providing the support that would allow individuals to live at home rather than in an institutional setting. The waiver covered two days of day programs. There are no transportation services provided (unless proved fully necessary), and the cost of special needs transportation was too expensive. “Jessie loved school. He loved the routine and being with his friends. I decided I needed to make this new normal be like his new school. I would drive him to the day program for the two days and the rest of the days he would just be home with me.” In their experience, they struggled with finding a good fit for the day programs. “Most programs get the most money from the Federal Government if they provide vocational training,” she explained. “There would be someone who would try to have him vocation trained in two weeks, but that just wasn’t going to happen with Jessie. Maybe for higher functioning people with Autism, but not for Jessie.” Further, Jessie was not happy. “He did not like being home with me. He wanted to be with friends, the people he liked, doing the things he liked,” Sadie shared.
In searching for a residential placement, Sadie and Michael have struggled. “We’re not going to just place him anywhere. With him being non-verbal and having serious behaviors to deal with, its harder to find a place to take him.” She continued to explain that there are mentally ill, homeless people who are unable to get into these residence programs. The waiting lists are so long for residential group homes, that to get in there must be an urgent emergency or someone must die to get a spot.
A second option for residence for adults with autism is utilizing a Family Home Provider. This is essentially adult foster care, where a family takes in an autistic adult and acts as a guardian and caregiver. “Living in an FHP just is not an option for Jessie. If living in a family setting was an option, he would just live with us.”
Sadie and Michael have developed a personalized residential plan for Jessie. They purchased a condo were Jessie lives and he has in home service providers that stay with him and provide therapies and interventions through out the day. Jessie has a roommate who lives with him for free with the trade that she will be home by 9:30 to watch him five nights a week. The other two nights, Jessie spends time with Sadie and Michael or with his grandmother. While this arrangement seems to be the best fit for Jessie right now, Sadie says it is not sustainable. “I manage his whole life. I pay his bills. I manage his money and his home. I manage the home health care he receives. It is up to me to make sure that his care is covered if one of his service providers is sick. If someone is not doing what they are supposed to do, I have to step in and ask, ‘Why did the laundry not get done, or why are you not completing the things you are getting paid to do?’” The benefits of this living arrangement include Jessie getting so much one-on-one attention. Right now, he is learning to cook and do laundry with the assistance of therapists. In a group home that one on one time is divided by the number of residences. In a group home, all the decisions and services are determined by the home. “Jessie goes skating every Saturday and Sunday,” Sadie shared. “In the group home setting, this would not be something they would do. Of course, we could take him, but the things he is accustomed to doing would be different.”
Because Sadie is so involved with the daily care and management of Jessie’s life, there is great concern to his care in the future. “It’s a huge responsibility. We wrote a will and picked a care provider, but as the years pass and people age, we have to reconsider our choices.” Added to the challenges of balancing the daily needs of Jessie, are the anxieties caused by the unknowns of the future.
In the past thirty years, the culture of Autism has changed drastically. Being on the front end of the wave of the Autism Surge, Sadie believes she has watched as community services and health providers have had to try and catch up with the number of autistic children and now adults who need services. The waiting lists are an indication that service providers were not prepared for the numbers. Being in the front has changed Sadie. “It has been an interesting road. I was always very shy and quiet. Having to advocate for Jessie, fight for his services, and now hire and manage all these people who are a part of his life, I have really had to come out of my shell. It has forced me to become a new person.” Sadie, along with other mothers of autistic children, have become problem solvers and innovators. When their children aged out of programs and there were no services, these mothers developed summer day camps for teen-agers with autism. To help support, educate and advocate for families, including their own, they set up FEAT (Families for Effective Autism Treatment) of Louisville. I asked Sadie what she wished the community at large knew about Autism. She sat in quiet contemplation. “Wow, that’s a huge question. I am not sure if there is any one thing I think people should know. I guess mainly, I think I would just want people to know what Autism is, that it is this thing we are dealing with. I don’t want people to look at us with pity, but instead just know this is what it is and we are dealing with it the best way we know how.”
For more information about Dreams in Motions Summer Day Camp, please visit: http://www.dreamswithwings.org/children-services/
For more information about FEAT Louisville, please visit: https://featoflouisville.org/
To protect the privacy of this precious family, the names have been changed in this article.