Thanks for doing this, Kerri. We go back a long way, to the many years I wrote about disabilities for The Providence Journal.
KC: I will never forget the time you and I met. It was a very difficult time for me and my family. My daughter, Ava, who lives with autism, was warehoused for 400 consecutive days in an institution, where she didn’t belong. I advocated with my heart on my sleeve to get a modality of treatment called ECT-Electro Convulsive Therapy.
After our first treatment, we saw our daughter become comfortable in her own skin. Long periods of happiness, less self-injurious behavior, anxiety levels lowered, intense eye contact was noticed, breakthroughs with learning, engagement, and an amazing Ava personality emerged. We certainly have no regrets. Meeting with you, Wayne, seemed to help me bridge my emotions to turn them into a catalyst for more positive growth when advocating for people with disabilities.
Let’s begin with you giving us an overview of your involvement in the field. How did it start?
KC: I have a life that has more twists and turns and having a daughter with special needs Non-Verbal Autism, I just lived in survival mode: learning each day, what I could do to advocate for my daughter and make sure my well-being was a priority; and educating myself and others to perhaps not reinvent the wheel, however take what’s working to build upon and change what’s not. Learning from all the ebbs and flows, I decided to channel my negative energy, towards a way to create positive pathways for my myself and family. I worked with the Rhode Island General Assembly on policy changes for the IDD (Individuals with Developmental Disabilities) community to ensure entitlements are available, and services, supports and essential life skills are followed under the laws. Special Education became a second language to me.
You are a RI Lend Fellow. What is that?
KC: I was contacted by a former colleague and was introduced to a program called Rhode Island LEND: Rhode Island Leadership Education in Neurodevelopmental and Other Related Disabilities Training Program at Brown University Health. I threw my hat in the ring and decided to give it a try. This program was intense at first and I was mentally not prepared but with support from my mentor, Jonna Mulvaney, and other LEND Faculty, I quickly adapted to the flow of the program. To my delight, I was able to stay focused and test the waters out of my comfort zone.
Over the course of the academic year, trainees are expected to participate in a minimum of 300 hours (approximately 12 hours/week) of didactic, clinical, and interdisciplinary leadership training.
The program includes:
• Didactic sessions (3 hours/week for an academic year) led by experts from a range of disciplines are designed to help trainees develop the skills, knowledge, and perspectives necessary to become complete, highly competent providers of neurodevelopmental services.
• Mentored clinical experiences with interdisciplinary teams in medical and community settings.
• A leadership project that allows the trainee to focus on a topic they are interested in and that is relevant to their future work in neurodevelopmental disabilities.
This led you to Impossible Dream in Warwick. What is it?
KC: Diane Penza, owner of the Impossible Dream, Warwick, has a non-profit organization to help special needs children, under the age of 18, called “The Dream.” There is an application process and Diane usually reaches out to the families and makes all the personal touches to go above and beyond for their “The Dream.” Impossible Dream is also considered a community partner and allows other non-profits to use her space.
After RI LEND, my leadership project was Care for the Caregiver. I partnered with The Arc of RI and the Developmental Disabilities Council funded my project. Under the Arc of RI, it was called Circles of Connection-Care for the Caregiver. I was a Group Leader and trained others to lead the groups and provide 1.1 support. Here, I was able to network with community partners and really be able to refine supports, discounted for belonging to my project. Here is what we offered: Caregiver Sundays held virtually, discounts for massage therapy, free hair styling, and Chris McGrane offering free respite with her nursing students.
My Leadership Project is to help with caregiver burnout: Showing ways to carve out time, just for them and then they can be their best to care for others. Most signed up for advocacy after realizing that taking care of yourself is vital. If your cup is half full, then get a smaller cup. Always look at how you can make positive changes. (SELAC meetings are part of the Laws in Special Education and often don’t get the parents to participate in them.)
In addition, I was also trying to focus on moms who are SELAC chairs to be able to make it a part-time job. Also important: Providing options to have a virtual component, bringing the child to a SELAC meeting, having high school students volunteer to entertain the children, and using social media to encourage special needs parents to attend. The program was able to branch off and make other connections from social media networks as well. Places like the Sherlock Center will be sharing flyers to attract this exclusive opportunity to break the isolation and be more active in the community, as well as having others join who identify as a Caregiver.
A one-stop shopping for taking care of yourself, learning about advocacy, learning about resources, supports and being included in a village of support and community-centered with opportunities to volunteer. Networks that work together: Diane Penza is a community partner who lets us use her amazing space and playground; Chris McGrane is a community partner; Sacred Soul Therapeutics, is a community partner; RAMP-Real access motivates progress is a community partner; SPEAR – special education, advocacy, and reform – is a community partner; and the Sensory Stylist is a community partner.
You have a partnership with The Arc of Rhode Island, grant-funded by the Rhode Island Disabilities Council. Can you please elaborate on what this offers people for free?
What about Group Respite?
Finally, where do you get the energy for all of this?!
KC: To answer honestly, sometimes I don’t really realize how much I take on! My fulfillment in advocating also includes RAMP-Real Access Motivates Progress, where I am a proud board member.
Editor’s note: This interview was conducted by email.
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