Dear Committee: My Life Is An Open Book

Today I spoke in front of our Health and Human Services Committee, sharing the details of my family life over the last nine months since Butter graduated from high school and the bottom dropped out while we continue to wait for adult services funding. My voice wavered and tears stung my eyes several times during the presentation, but I willed myself to get through it. It never gets easier to share the intimate details of aggression, self-injury, problems juggling work, health issues from living with stress, sacrifices made by my other kids, and the overall train wreck that is sometimes the Mother Autism life. The best possible outcome is that they will hear my testimony (and that of other parents going through this and worse… some have divorced and lost their homes due to this 1000-person waiting list), and increase the cap (currently only 21.5 hours/week) to 40 hours/week, so that these adults with intellectual disabilities and autism will be served, and families will be able to work outside the home instead of losing income because there is no appropriate place for the disabled to go. When I finished my presentation, several members of the committee looked sympathetic, even relieved that I was done speaking… They could see that it was painful for me to share our situation with them. That’s okay. Sometimes we need to let others see our pain. Sometimes knowing that you can ease the pain of others is a powerful motivator.

Here’s what I said:

I’m here today to tell you about my twenty-year-old son, who is non-verbal and has autism, and graduated in 2014. We’d made the decision to keep him in public school for as long as we were able, even though that meant he didn’t get to march in his high school graduation with those peers who had learned sign language and attended his birthday parties. We chose to sacrifice this because we were trying to bridge the gap between children’s services and adult services. It may not seem like a significant sacrifice to others who are not in our situation, but understand that my son will most likely never graduate from college, get married, or have children. What’s left? Graduating from high school with your friends around you.

Once he’d graduated, he lost the 40 hours of structured programming provided in public school. As a person with autism who finds unstructured time stressful, he began showing increasing aggression and self-injurious behaviors. There were adjustments made in our family life. I’ve had to dramatically adjust my work schedule to be home with him while his name lingers on a wait list for adult services funding. While I am a warm body at home with him to keep him safe, I am working as best I can, and can’t neglect the duties of my job to take him into the community and be his direct support worker.

My son is someone who requires a great deal of physical movement to regulate his moods and behaviors. Between school and his Section 28 services, he was able to participate in physical education every morning, and accessed the public pool and walking trails. He even volunteered at a fitness center over a period of several years, where he developed confidence and social relationships with community members. Without funding for support services, he has only been able to visit the gym twice per week. In the past nine months, he has become depressed and developed compulsive eating habits, which in turn resulted in a weight gain of 25 pounds. I suggest to you that most of us would be depressed and agitated if we gained that amount of weight in only nine months.

His doctor has authorized an increase in medication when my son is especially agitated, but it should be noted that he did not need this additional medication when he was adequately served. Is medicating a better choice than providing support to someone who wants to be engaged in his community, and has so much to offer?

We have had to lock up our food and suffer through his rages because we’ve made it harder for him to use food as a coping strategy. Our family has made sacrifices and accommodations to keep both him and us safe and functioning as best we can. DHHS/OADS consistently suggests that families utilize respite funding and “natural supports” as an alternative when structured programming isn’t available. I find this to be insulting and frustrating, when families are losing jobs, homes, dealing with increased behaviors, and watching their loved one lose skills which have taken a lifetime to build. How can he access natural supports, when his aggression is escalating and his ability to regulate himself decreases with each unstructured day?

My son is a young man who, less than a year ago, was able to regulate his behaviors without increased medication, engage socially with the use of his communication device, and follow a structured schedule with 62 hours per week of school, transportation, and Section 28 supports. For the other 106 hours each week, he was calmly engaged in day-to-day family activities. I’d like to note here that the increased behaviors, the need for additional medication, the weight gain and depression… this has all occurred while my son continued to receive 22 hours per week of Section 28 [home and community] supports. This is especially concerning, since the current cap for Section 29 services is less than the amount he’s been receiving. Where do we go from here? Crisis services and/or hospitalization will be significantly more costly, both to MaineCare financially, and to our family emotionally. We are asking for you to increase the cap on funding for Section 29 services, so my son and others like him can have needed and deserved support.

Thank you for your time.

Respectfully submitted,

[Mother Autism]