INSIGHTS ON INCLUSION FROM A PARENT, ADVOCATE & FOUNDER

BY KIM HUMPHREY AND SEAN LUECHTEFELD

Editor's Note "Included. Supported. Empowered." is a three-year storytelling and public awareness-raising initiative designed to celebrate the successes of individuals with intellectual and developmental disabilities, and to raise up the important role providers play in making those successes possible. The Included. Supported. Empowered. team got the chance to sit down with Kim Humphrey at a recent gathering of the Maine Association for Community Service Providers. Kim is the mother of an exceptional child with autism named Daniel, and founder of Community Connect Maine, a growing group of parent-advocates in the state who are vigilant in their fight to ensure Mainers of all abilities have access to the high-quality supports they need and deserve. This article contains part one of the two-part conversation we had with Kim, which has been lightly edited for clarity and tone.

INCLUDED. SUPPORTED. EMPOWERED.: Tell me a little bit about your son, Daniel, and his experience with an autism spectrum disorder.

KIM HUMPHREY: Close to three decades after he was diagnosed, Daniel, at 30 years old, is thriving. The last 10 years have been the most stable of his life. He is non-verbal with severe autism. He uses only basic functional communication. Because communication is so limited, he at times exhibits aggression to express frustration or pain. However, he has learned—with staff prompting—to de-escalate himself, which is a major achievement. I am thrilled that he is in an environment that provides enough to allow him to continue to grow, learning skills even beyond his years in the school system. 

Since returning from an excellent out-of-state residential school almost ten years ago, Daniel has lived with another young man with autism in a well-run group home. They live near a college where he volunteers weekly delivering excess food to a near by soup kitchen. During the week, he serves 12 Meals on Wheels clients who look forward to his visit.

In addition to contributing to his community, he takes care of his daily household chores, including doing his laundry, selecting his meals and picking up groceries. He still makes time for a little drumming, jumping on the trampoline, walking in his neighborhood, working out at the local YMCA and hanging out with peers as he competes in Special Olympics. Neighbors who have included him in annual summer picnics have remarked about how they enjoy his presence as they peer out their window to see him walking around the block or jumping in his front yard. My son's frequent radiant smiles say it all. I couldn't be prouder of him.

ISE: When did you first realize Daniel was on the autism spectrum?

KH: He wasn't diagnosed until he was six, although we knew a great deal well before then. The day Daniel was born, the pediatrician told us he was "perfect." Of course, Dan's dad and I agreed. Looking back, I remember his 19-month-old sister, Kristin, pointed out when she saw her little brother in the hospital basinet for the first time: "He has a tongue!"

While he did have a tongue, we realized a few years later that his language was not developing. We were shattered when we discovered that learning to talk was going to be difficult, but we didn't know the full story at that point. Daniel was initially diagnosed by an expert pediatric neurologist with congenital dysphasia just before he turned two-and-a-half. The doctor said it was a garden-variety language disorder that Daniel could overcome by age five – albeit with intense intervention. 

We were informed at that time that it might be autism. However, it didn't matter because the intense intervention for congenital dysphasia was the same treatment he would need if it was autism. Because progress was slow, we knew it was autism long before his official autism diagnosis occurred at age 6.

ISE: What are some of the supports and services Daniel has received over the years? 

KH: Right after he was diagnosed and to this day, Dan responds best in a structured environment that includes activities that are engaging to him. Speech and occupational therapy help to unlock his ability to communicate and accomplish useful tasks. Sensory integration strategies built into his day as preferred activities (jumping, rocking, sitting in bean bag chairs, playing with squeezable toys) were used in his school years. He did well with a broad applied behavioral analysis approach, which worked best when the training tasks were functional. He learned in small, tedious steps the skills that come naturally to so many of us.

What is amazing is the huge difference it makes when Daniel receives the support he needs. Over the years, my family and his team learned what programs work well and what would fail him. If he had well-trained staff, no gaps in care, excellent transitions, and around-the-clock learning and supervision, he made slow but steady progress. On the other hand, when this level of support was unavailable, he would learn new aggressive behaviors like kicking, biting or pulling hair. With consistent, well-trained professionals supporting him, he loves joining in community activities. But with gaps in care, his skills deteriorate. In other words, with appropriate care, Daniel has dignity. Without it, Daniel is uncivilized. 

ISE: So often, we hear families talk about the need for consistency in their loved ones' lives, but we also know there is a huge dearth in the number of Direct Support Professionals out there to work with folks like Daniel. Has that ever impacted your family? KH: Absolutely. While Maine had some wonderful providers, it  lacked the steady workforce required for Daniel to make progress. So, when he was 11 years old, Dan left his family home to live in a residential school for autism in Massachusetts. A year later, we tried to bring him back home to create a group home nearby by applying for a Home and Community-Based Services (HCBS) waiver, which would have funded a group home to be operated by a provider agency. Though Daniel qualified, there was no funding in the waiver program for him. It was not until he graduated at age 20, eight years later, that he received the HCBS waiver. He was then able to return to Maine, and he moved into the group home in Lewiston where he still lives today. ISE: Wow – eight years? No family should have to wait that long to have their family together in one place. KH: Exactly. ISE: So tell me about the impact Dan's support providers have had on him and on your family.

THE EXTRA MILE: Daniel makes working out at the local YMCA part of his busy routine; "Some providers were courageous, creative and clever about leveraging much-needed services. These people were critical to the success he has experienced. It was not unusual to observe a young professional succeed in teaching Daniel, then go on to have a highly successful career. I started thinking of my son as a career launcher."

KH: I felt extremely lucky when quality professionals would reveal new ways of healing Daniel. Some providers were courageous, creative and clever about leveraging much-needed services. These people were critical to the success he has experienced. It was not unusual to observe a young professional succeed in teaching Daniel, then go on to have a highly successful career. I started thinking of my son as a career launcher.

We also came upon people with high levels of expertise that could intervene in a crisis, perform a functional analysis assessment or recommend an indepth strategy that would work. Without some of these people, my son would be functioning at a much lower level today.

There are very few people who had the highest level of expertise that he seemed to require. When my son graduated from high school, an adult service provider commented to me that my son's skill level was higher than people they served that had similar characteristics—and I think that's thanks to the many wonderful providers we were fortunate to work with.

ISE: In 2015, you started Community Connect Maine, a coalition of parent - advocates. What inspired you to start this group?

KH: It's simple: people with disabilities and the families supporting them deserve to have the opportunities that are open to the rest of the world. This ought to happen without being subjected to the choice of lifelong advocacy marathons or living without needed supports. When policymakers understand the collective stories of people living with the disability community, positive changes can happen. That is the basis of the motivation behind Community Connect Maine. • 

Kim shares more about Community Connect Maine, her work as an advocate and organizer, and her family's incredible story in Part 2 of this conversation in Exceptional Parent magazine's April issue. Stay tuned!

ABOUT THE AUTHORS: Kim Humphrey is Founder of Community Connect Maine. She can be contacted at khumphrey.phadv@gmail.com. Sean Luechtefeld is Communications Director for the ANCOR Foundation and its Included. Supported. Empowered. campaign. He can be contacted at sluechtefeld@ancor.org.