PART II

INSIGHTS ON INCLUSION FROM A PARENT, ADVOCATE & FOUNDER

BY KIM HUMPHREY AND SEAN LUECHTEFELD

Editor's Note In Part 2 of our conversation with Kim Humphrey, founder of Community Connect Maine, the Included. Supported. Empowered. team learns more about the advocate behind this incredible group of parents committed to opening up opportunities for inclusion and empowerment through community support, not only for their own children but for people of all ages and abilities. Part 1 of our conversation appeared in EP Magazine's March 2019 issue.

INCLUDED. SUPPORTED. EMPOWERED.: Is it safe to say that your personal experiences helped lead you to start Community Connect?

KIM HUMPHREY: That's an understatement! For years, I had experienced system changes for my son's programs. I would share my story one-on-one with people in the system, and then I would listen to what they said about their experiences in the system. When we each understood the other's perspective, we had often had enough information to solve the problems we were facing. I believed this would work on a population level as well. The collective wisdom of people can improve systems. I knew this from my professional background, which was in public health. So, I tended to think in terms of communities and systems.

Fortuitously, my first job after college was as an AmeriCorps VISTA volunteer. I was trained as a community organizer and youth advocate. I was pleasantly surprised to learn how quickly people can organize themselves and make improvements to their communities. If people feel passionate about something, if people share that passion in common with others and if they are connected to resources, they can collectively make a difference. That knowledge and the experience of being a VISTA certainly helped.

Then, in 2014, I learned the Department of Health and Human Services (DHHS) proposed a rule that I believed would be detrimental to about 4,000 adults with disabilities receiving services. That was my cue to transition from a job working in the health care field to begin Community Connect. It was time to bring lots of families together with a common passion of supporting a quality life for adults with developmental disabilities that were receiving Home and Community Based Services.

ISE: What are some of the kinds of activities Community Connect Maine engages in? What resources does it provide for parents in Maine?

KH: In 2015, we obtained a small grant to do an advocacy training for 10 people to be timed with the comment period of the proposed rule change that I mentioned a minute ago. The advocacy training was to prepare the families to do a media event. We had anticipated the rule change would be in May, and so we had identified 10 people to participate in a press event, who were then trained by an advocacy consultant, Shenna Bellows. Shenna is now a State Senator here in Maine, by the way.

However, it took several months for the final rule to come out, so while we waited, we did more outreach and trained and educated more people. Other statewide organizations joined collaboratively in the effort to educate families about the issue. Nine months and four trainings later, the final proposed rule came out and a public hearing date was set. During the public hearing, our trained family members did a press conference. By the end of the public comment period, DHHS reported that 600 public comments had been submitted about the rule—a record number. In the months that followed, DHHS pulled the rule. ISE: That's amazing! Is that a typical approach you all take toward mobilizing advocates to make a difference?

KH: Well, we take a lot of different approaches. The mission of Community Connect Maine is to connect families, caregivers and communities to raise the standard of care for people with developmental disabilities and their families. We connect people within and between communities by having them join our network that now includes over 3,000 people. And we do whatever will work to help us achieve our vision.

ISE: So how can someone get involved?

KH: There are a ton of ways. They can join an ongoing advocacy effort we're leading, join our closed Facebook group ( facebook.com/groups/communityconnectmaine) or follow our public Facebook page ( facebook.com/CommunityConnectCollaborative), join an inperson regional group, start a new regional group or connect an existing group to our network, and more.

Once they're tuned in, people can use Community Connect Maine to discuss topics of interest, build friendships, express what matters to them most via surveys and conference calls, and take advantage of learning opportunities available through our network. We also have several partners we work with that I would encourage people to get connected with. In particular, I recommend people join the Maine Coalition for Housing and Quality Services ( maineparentcoalition.org), which offers monthly educational presentations and is a founding organiza tional partner of Community Connect Maine. I also encourage people to get involved with another of our organizational partners, Disability Voters of Maine ( facebook.com/DisabilityVotersMaine).

ISE: Besides getting involved with Community Connect Maine, what advice would you offer parents of children with autism and other intellectual or developmental disabilities—here in Maine or anywhere else in the country?

KH: Have confidence in your story. The experiences of families traveling this road is rich with wisdom. People not familiar with it need to hear them, to understand, to learn from you. Be open to the idea of new opportunities for your children. Be open to the possibility of the growth of a more accepting society. Be a part of the collective voice that raises standards of care and quality of life for the disability community.

ISE: It sounds like being Daniel's mom has led you on a long and winding—but inspiring—journey. Is there anything else about that journey you want to share?

KH: To help him obtain the opportunity to learn new skills and to communicate better, I have had to push through my own fears to expand my skills and the ways I communicate. For example, I used to be too shy to introduce myself to a conference speaker or ask questions in large groups, but now I can do it. Healing him has been healing for me. Knowing that these efforts come out of the bond of love from mother to child gives me a greater appreciation of how strong love can be. ISE: No better way to end this conversation than with that. Thank you so much for sharing your insights and experiences!•

THE GIFT OF LOVE: Kim Humphrey celebrates her birthday with Daniel; "To help Daniel obtain the opportunity to learn new skills and to communicate better, I have had to push through my own fears to expand my skills and the ways I communicate. Healing him has been healing for me. Knowing that these efforts come out of the bond of love from mother to child gives me a greater appreciation of how strong love can be."

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.