Recognizing Caregivers in Missouri
November is National Family Caregivers Month, dedicated to recognizing and honoring unpaid family caregivers who provide care for loved ones. Family caregivers are the primary support system for children and youth with special health care needs, providing personalized care, emotional support, and strong advocacy. They hold the history of their child’s medical journey and help their loved ones stay in the homes and communities they cherish.
The Special Health Care Needs (SHCN) Family Partners understand the rewards and challenges of caregiving. Caregivers may face emotional isolation, physical demands, financial barriers, and lack of recognition and ongoing support. Yet caregiving also brings positive growth – stronger relationships, personal purpose, and lifechanging “caregiver gains.”
Here are a few ways to encourage and support the family caregivers in your life:
-
Give a break. Provide respite by spending time with their loved one. Nothing is more valuable than the time you give to others.
-
Stay in touch. Make a call or send a text. Let the caregiver know you are there to listen.
-
Offer help before they ask. Many caregivers hesitate to request help, take the initiative to offer.
-
Help at home. Clean, deliver a meal, or finish a task on their list.
-
Send a note. A card or message can let them know you are thinking about them.
-
Keep inviting them. Even if they can’t join, let them know they are always welcome.
SHCN Family Partners invite you to honor and celebrate the caregivers you know by nominating an unpaid family member or friend for the Missouri Caregiver of the Year. The Department will feature a story and photo of an unpaid caregiver each month. By December, an overall Caregiver of the Year will be selected.
To nominate someone:
- Complete the nomination form and photo release form
Email both forms and a digital photo of the caregiver to DSDSOfficeOfConstituentServices@health.mo.gov.
|
2025 Special Health Care Needs (SHCN) Family Partnership Parent and Caregiver Retreat
The SHCN Family Partners planned and hosted the 2025 SHCN Parent and Caregiver Retreat, “Just Keep Swimming”, on August 16th – 17th at Lake of the Ozarks.
-
Attendance: 114 parents/caregivers in attendance, as well as 19 professionals.
-
Resources: 18 exhibitor booths with services and information.
- Topics included:
- Division of Developmental Disabilities (DD): Eligibility, Home and Community Based Services (HCBS) Waiver Programs, and DD Health Home
- Caregiver Burnout and Self-Care
- Power in Connection: Peer Support, Leadership & Advocacy Across the LifeCourse
- Parent Café
- Glass Children - What It’s Really Like to Be the Sibling of a Child with Special Health Care Needs
- The Crucial Impact of Early Peer Socialization for Children with Hearing Loss
- How to Discuss, Discover and Fund Assistive Technology
- Be Prepared: Emergency Plans for Families of Children and Youth who are Deaf and Hard of Hearing
- Disasters and You, Preparedness for Missouri Families
- Saving with MO ABLE Accounts
SHCN Family Partners, all parents of children or youth with complex medical needs or who are deaf or hard of hearing, chose these topics based on their lived and professional experience. They also hosted a Medical Home Spotlight exhibit designed to help families understand how to establish a medical home, which can make it easier to coordinate their child’s care and services.
The Retreat provided an opportunity for families to network with one another, discover resources to assist their family, enrich their leadership and partnering skills, and plan a vision for their family’s future.
What Parents Said:
- “Everyone is going through the same thing, just different parts of the journey and support”
- “New parents don't always know what they need, everything seems of #1 importance. Guidance is key”
- “This Retreat was amazing and I was able to connect with other parents. I learned a lot of new things that I will share with other parents in my community”
- “Learning how to be a leader in more ways than one”
 Photos (L-R): Presenter sharing information with parents and caregivers on Glass Children; Parents hosting Parent Cafe with parents and caregivers; Presenter sharing information with parents and caregivers on MO ABLE; Presenter talking with parents and caregivers about assistive technology in Missouri; Exhibitor sharing information with parents and caregivers on Medical Home; Presenter sharing information on early peer socialization for children and youth with hearing loss.
2025 Retreat Session Spotlight: Glass Children
with Mikaela Fox, LMSW/Sibling
Siblings of children and youth with special health care needs often have experiences that are different from those of their peers and may need extra support from their parents or other trusted figures to understand and cope with their feelings. During her presentation, Mikaela explained the concept of “glass children”, siblings who sometimes feel unseen because the focus is on their brother’s or sister’s care. She shared a video featuring Missouri siblings talking about what it’s like to have a sibling with special health care needs, and provided resources to help parents and caregivers support their children.
Key Points for Parents and Caregivers:
Supporting Your Child
- Not every sibling will have the same experience
- What is helpful to one sibling may not be helpful to another
- Siblings may experience a wide range of emotions at times; both positive and negative
- Talk to your children from an early age and support them in ways appropriate for their age and development
When to Seek Help
- Changes in sleep or appetite
- Mood swings, depression, or anxiety
- Difficulty concentrating or poor grades
- Withdrawal or loss of interest in hobbies
- Attention-seeking, disruptive, or rebellious behavior
***If your child is experiencing one or more of these symptoms and you have concerns about their mental health, contact your child’s pediatrician and/or a mental health professional. ***
Inspirational Thoughts
 |
|
In her poem “No Longer Scared of Bees,” author Alycia O. shares her journey of overcoming the fear of judgment and embracing life with spinal stenosis — a spinal condition that challenges her daily but also strengthens her voice as a writer. She hopes her words encourage others to find strength in their own journeys.
|
Resources
Family Leadership and Advocacy:
Financial Planning:
Glass Children:
Medicaid Programs for MO HealthNet Participants:
Contact Your Special Health Care Needs (SHCN) Family Partner
For more information, please visit the SHCN Family Partnership webpage. If you have questions or concerns, please contact your Family Partner. Click the thumbnail to view the map and contact information |
|
 |
|
