Photo: Howard Korn
On Advocating with Rob
When my son Rob transitioned from high school to self-directed services for people with disabilities, he let us know he wanted to be an advocate. Actually, he wanted to be a protestor, but I reminded him that protestors also advocate for issues they’re passionate about. Rob decided he was passionate about three issues: rare disease, disability rights, and health care. Our family had already been active with Rare Genomics, a nonprofit that had helped us access genome sequencing to diagnose Rob after a 14-year search for the origins of his ultra-rare disease.
Rob asked me to assist him in his quest to be an advocate. Along the way, I became an advocate, too. Now we’re a team.
Rob and I volunteer for several organizations at the state and federal levels:
Little Lobbyists: a family-led group advocating for children with complex medical needs and disabilities. I am the LL blog manager.
Maryland Rare Action Network: RAN is the volunteer arm of the National Organization for Rare Disorders. I am the Maryland Community Ambassador.
Caring Across Maryland: a broad coalition of advocates, workers and patients in nursing homes, assisted living and home care, fighting for a more caring health system.
Self-Directed Advocacy Network of Maryland: a family-led advocacy group for participant choice, control, flexibility, and the sustainability of self-directed services and supports.
As members of these organizations, Rob and I have advocated for Medicaid and its Home and Community-Based Services (HCBS), speaking with federal and state legislators, and participating in rallies, town halls, and press conferences. We have also worked with these teams to pass state legislation for self-directed services, a rare disease advisory council, home care worker misclassification, home care worker registry, and adult changing stations in public facilities. It is gratifying to work with others to effect change.
In addition, I serve on the Montgomery County Commission on People with Disabilities, and the Maryland Rare Disease Advisory Council.
Rob's rare disease story, courtesy of Rare Genomics.
SELECTED PRESENTATIONS
Caring Across Maryland, press conference, January 24, 2024, spoke on the need for a Caregiver Tax Credit, Annapolis MD.
Care Is Essential Day of Action on Capitol Hill (SEIU), May 5, 2022, spoke on behalf of Little Lobbyists on the need for increased funding for Medicaid Home and Community-Based Services, Washington DC.
Care Coalition Rally: Home and Community-Based Services Vigil, October 7, 2021, spoke on behalf of Little Lobbyists to share “Caregiving is Infrastructure” stories, Washington DC.
Maryland Assembly Joint Committee on Children, Youth & Families, November 20, 2019, “Survive & Thrive?: Challenges to Keeping Medically Complex Young Adults in Their Communities,” testimony on long-term care issues, Annapolis MD.
2nd International Conference on Disability Studies, Arts & Education, October 3-5, 2019, “Monster: DNA & Identity,” Moore College of Art & Design, Philadelphia PA.
Tax the Rich Bus Tour Press Conference, sponsored by Tax March, July 10, 2019, National Mall. Spoke on behalf of Little Lobbyists on my family's experience with health care and drug prices.
U.S. Senate Democrats FaceBook Live, “Senate Democrats on Republican Healthcare Sabotage,” June 24, 2019, U.S. Capitol. Spoke on behalf of Little Lobbyists on my family's experiences with pre-ACA health care.
Protect Our Care, U.S. Senate Press Conference, April 30, 2019, convened by Senators Chris Murphy, Bob Casey, and Doug Jones, U.S. Capitol, Washington DC. Spoke on behalf of Little Lobbyists, "Why Medicaid Matters."
Rare Action Network, February 28, 2019, Rare Disease Day Panel Discussion: "Caregiver Challenges," United Way of Frederick County, Frederick MD.
Rockville City Council, February 26, 2018, “Robert & Rare Disease,” remarks after accepting the council’s Rare Disease Proclamation on behalf of the National Organization for Rare Disorders (NORD), Rockville MD.
The George Washington University School of Physical Medicine, April 21, 2017, “Pediatric Physical Therapy: The Parent Perspective,” guest lecture for The Management of the Pediatric Client/PT8320, Marisa Birkmeier, assistant professor, Washington DC.
Amplify Hope: Crowdfunding in Genomics, Empowering Patients in Their Journey, January 2016, “Rare Disease Patients: Is the Fault in Our Stars?,” Rare Genomics Institute, Four Points Sheraton, San Diego CA.
Rob Stone tells us why home care matters to him.
Interviews on Behalf of Rare Genomics
“With Insurers Reluctant to Pay for Genomic Testing, Some Patients Turning to Crowdfunding,” by Monica Heger, GenomeWeb, August 4, 2015
TEDxMidAtlanic Conference, October 2013, interviewed in talk ("Start Now") by Dr. C. Jimmy Lin, Founder, Rare Genomics Institute, on rare disease and genomic medicine, Sidney Harman Hall, Washington DC.
“Kickstarting a Cure,” by Noah Rosenberg, Narratively, July 18, 2013 (reprinted in Salon, July 25, 2013)
“Prick My Baby's Foot: Whole genome sequencing at birth can catch rare genetic conditions & help early treatment,” hosted by Nancy Redd, HuffPost Live, January 8, 2013
“Jimmy's kids,” by Virginia Hughes, Johns Hopkins Magazine, December 3, 2012
“How do traditional and social media converge to help those with rare diseases?,” by Mary E. Harris, Sound Medicine, WFYI Indianapolis (NPR podcast), November 18, 2012
“Orphan diseases find a champion,” by Melanie Ave, Faith & Leadership (Duke Divinity), August 14, 2012
“Counting on the generosity of the crowd: Startups use crowd-funding to aid patients, nonprofits,” by Gus G. Sentementes, The Baltimore Sun, November 13, 2011
(Video) Protect Our Care Rally (4/30/19): Jeneva & Rob speak about the importance of Medicaid to disabled people.
