Transitions Kids – Hospice and Palliative Care

Resources and Tools 

• Sibling support TEDx Talk – “Recognizing Glass Children” 
• SBSK – a place where disabled and neurodiverse people of all backgrounds share their story 
• Man Enough to Care – a miniseries about caregiving that “begins to define a new, healthy masculinity rooted in a culture of care” 

Books 

• Caring for a seriously ill child 
• Patient education 
• The Circle of Care Guidebook for Caregivers of Children with Rare and Serious Illness: intended to help caregivers navigate through the varied experiences and challenges of rare and serious medical conditions, guided by the insights, achievements, and learnings of other caregivers and experts.

View this flowchart of possible referral sources for assistance in North Carolina. 

Community Alternatives Program for Children (CAP/C) 

CAP/C provides home- and community-based services to children at risk for institutionalization in a nursing home. You can apply through the Department of Health and Human Services (DHHS) or through a county CAP/C Case Management Provider. CAP/C provides: 

• In-home nurse or nurse aide care. 
• Home modifications and vehicle modifications. 
• Palliative care (art therapy, music therapy, counseling, and bereavement counseling). 
• Caregiver training and education. 
• Respite care. 
• Reusable diapers and disposable liners. 
• Physical, occupational, and speech therapy. 
• Medical equipment.  

North Carolina Infant-Toddler Program (NC ITP) 

The NC ITP provides supports and services for families and their children, birth to three, who have special needs. They work with Children’s Developmental Services Agencies (CDSAs) to provide:  

• Service coordination. 
• Physical, occupational, and speech-language therapies. 
• Family support. 
• Special instruction. 
• Assistive technology. 
• Other services. 

Supplemental Security Income (SSI) for Children 

SSI provides financial support for families with children who have a medically determinable physical or mental impairment(s). See a list of Compassionate Allowances (CAL) conditions here.