We are building something larger than a set of services.
Kids Rare Care™ is an institute for family independence, advocacy and leadership. We equip families with practical strategies, equip professionals to serve them well, and strengthen the communities both live in.
It started with a question nobody could answer.
When Tina Jackson's daughter was born with a rare genetic condition, she entered a world of uncertainty and unanswered questions. For more than thirty years she fought for her daughter's health, opportunities and future while carrying one question quietly: what happens to my daughter when I am no longer here?
She refused to let that fear decide the answer. Today Miss T lives in her own home with 24-hour support, makes her own decisions, and participates in her community. Tina founded Kids Rare Care™ because she knows the weight mothers carry, and because that weight turned out to be transferable.
No mother should have to spend her life holding everything together while silently wondering what happens to her child when she is gone.
Three decades of lived experience, backed by a career inside the systems families have to navigate.
Federal systems
A 22-year federal career, including three years as a Social Security Title XVI Claims Specialist working SSI policy, eligibility and documentation with families at the moment everything changed.
Advocacy & training
26 years of family advocacy and community leadership. Trained hundreds of volunteers in disability awareness and inclusion, including work with Joni and Friends International Disability Ministry.
Program building
Founder of Quest for Rest, a respite program that gave families three hours of relief and still serves families today. Developed the volunteer training curriculum behind it.
Education
Bachelor of Science in Social Psychology, plus a paralegal certificate. Served on the Missouri Department of Mental Health's Division of Developmental Disabilities board.
Published
Contributing author of Suddenly Brave Together, one of thirty letters selected. Publisher of The Rare Reader™, the institute's educational newsletter.
Recognition
The Whole Person Individual Achievement Award and the Missouri Resolution Award. Stood in the White House for the ABLE Act ceremony.
The seven divisions.
Everything we build has an organizational home. Some divisions serve families today, others are being developed in sequence so we build well rather than quickly.
Family Independence & Advisory
Helping families increase capacity, build sustainable support, and support greater independence. Entry point: the free assessment.
Professional Education & Training
Practical education for the organizations and individuals who support families and people with disabilities.
Tina Jackson Speaker Bureau & Leadership
Keynotes, organizational engagements, workshops, panels and media.
Communications & Publications
The Rare Reader™, books, articles, policy and advocacy updates.
Resource Library & Products
Planners, worksheets, guides, workbooks and independence planning templates.
Community Advocacy & Partnerships
Mentorship, faith community inclusion, volunteer education and organizational collaboration.
Resource & Research Center
A curated, verified index of services, benefits, organizations and research, built in phases.
Tionna Jackson. Self-determined professional, speaker, community advocate.
Miss T lives with Trisomy 8 Mosaicism, a rare genetic condition, alongside intellectual disability and barriers to communication. She communicates using an augmentative and alternative communication device, and she uses it on stage.
She has lived in her own home with 24-hour support for five years. Over thirteen years she has held four jobs, including McAlister's Deli and McDonald's, where she was Employee of the Month. She volunteered at a public library, a hair salon and a senior living community, earned her food service certification and CPR, and graduated from Project SEARCH at Arkansas Children's Hospital in May 2026. She is currently employed on the finishing team at a t-shirt screen printing manufacturer.
In 2015 she attended the ABLE Act celebration at the White House and gave then-Vice President Biden her signature hug.
“I live on my own. I live with my caregiver.”
“I'm young and I'm strong.”
“You are beautiful.”
“Thank you for all you do.”
Her story is not just one of overcoming. It is one of contributing within her community.
Hope. Confidence. Freedom.
Hope
That a meaningful future is possible, for the young adult and for the mother both.
Confidence
That families and professionals can build the skills, systems and partnerships that make progress real.
Freedom
To set down what was never meant to be carried alone, and to let independence be shared rather than solitary.
Whether you carry this at home or lead a room full of people who do.
Families start with the assessment. Organizations start with a conversation. Both take about five minutes to set in motion.