Accessing Services and Increasing Advocacy for Relative/Kin Caregivers Raising Native Children With Disabilities

The National Indian Child Welfare Association (NICWA) created this toolkit and accompanying tip sheet as supportive tools—grounded in respect, culture, advocacy, and relationship building—to help families, particularly relatives and kin who are raising Native children with disabilities. Both the toolkit and the tip sheet provide guidance to help caregivers access services and advocate for the Native children they are raising. The full toolkit covers topics such as financial assistance (including legal assistance, housing, and transportation), health care services, education resources, community-based programs, and other services that may be available to assist families. The tip sheet is shorter than the toolkit, focusing on the general tips that are available at the beginning of the toolkit. Both documents are available for download, and the tip sheet is laid out below.

Caregivers may not always know what services to request or what services their relative child might be eligible for, so these resources offer a place to begin. By collaborating with various service providers, relative/kin caregivers can effectively advocate for essential services and resources that promote positive outcomes for their relative children with disabilities.

Tips for Raising Native Children With Disabilities

Supporting Native Children With Disabilities

• Lead with understanding. You and your relative child may both be navigating big changes. Give yourself permission to learn as you go. 
• Honor your family’s story. Your caregiving journey is shaped by history, relationships, and circumstances that outsiders may not see. Trust that you know your family best. 
• Celebrate the child’s strengths. Every child possesses distinct talents, interests, and ways of communicating. Focusing on these unique strengths and joys helps create a more supportive environment for growth.  
• Remember that a diagnosis is not the whole child. It helps explain needs, but it does not define who they are or what they can become. Engaging children directly in service planning creates natural opportunities for them to voice their own needs—ensuring their personal preferences and goals guide their care.  
• Honor the child’s pace. Some children may not follow “typical” developmental timelines, but they grow and learn in their own way and in their own time. You can adjust, learn, and grow together. 
• Access community resources. Building a strong network through schools, community programs, medical providers, or trusted family, friends, and community healers provides valuable support. Navigating these resources is a collaborative process that strengthens your care system.  
• Take care of yourself, too. Caregiving is meaningful and demanding. Rest, connection, and small moments of joy can help you stay steady for the child. 
• Build your support system. Lean on family, friends, other caregivers, mentors, school or workforce connections, community programs, and support groups. Navigating multiple systems can be exhausting, especially for families raising a child with disabilities. You don’t have to do this alone. 
• Document everything. Keep records, notes, reports, and paperwork organized. You may need the documentation later for services, benefits, legal, or school support.  

Making Culture a Core Part of Caregiving

• Culture is medicine. Explore ways to adapt cultural practices for the child’s needs.  
• Use storytelling to support learning and transitions. Stories can help children, especially those with disabilities or sensory processing differences, prepare for what’s coming next and feel more grounded throughout the day. Storytelling is also a powerful way to teach and pass on values.  
• Incorporate songs when helpful. Music can make explanations easier to process and can soothe children who become overwhelmed by sensory input.  
• Seek guidance from elders and trusted community members. They can offer cultural approaches for including children with disabilities in daily life, ceremonies, and community activities.  
• Use spiritual and cultural practices for comfort and healing. Ceremonies, prayer, and traditional healing can provide regulation, connection, and strength for both the child and the family.  
• Adapt tools to the child’s individual needs. Some children may need quieter spaces, visual support, or sensory-friendly adjustments. Children who use medical support devices—such as wheelchairs, feeding tubes, oxygen, or communication devices—may also need extra space, time, or modifications so they can participate comfortably and safely.  

Sharing Key Information With Service Providers to Strengthen Support

• Describe what helps your relative child thrive. Tell service providers (school staff, physicians, therapists, child/respite care providers, etc.) what brings your relative child joy, what motivates them, how they communicate, and what helps them feel safe. A simple, one-page summary of their favorite activities, stories, games, dislikes, and how to navigate specific behaviors can ensure care is designed around your relative child’s identity.
• Share what has worked—and what hasn’t. If certain services, approaches, or communication styles have been helpful, say so. If something caused stress or harm in the past, it’s important for helpers to know that, too.  
• Be open about the support you need. Raising a child with disabilities can be demanding. Service providers can support you best when they understand the full picture—they rely on your voice.  
• Talk through approaches that support safe and meaningful contact with parents. When safe and appropriate, helping the child stay connected to their parents can strengthen their sense of identity and belonging. Keeping contact predictable, supported, and centered on the child’s needs can help the parent-child relationship grow in healthy ways over time. Ask service providers about ways you can support parent-child relationships. This can include communicating the same needs mentioned above with the parents, so they can mirror supportive techniques within the home environment.

Understanding Eligibility for Services as a Relative/Kin Caregiver

• Eligibility depends on the program, the child’s Tribal affiliation, and where you live. Some services are available only to Tribal members, including those who live off Tribal lands. Others are based on residence or serve Native people more broadly. Because requirements vary, ask each program what your relative child qualifies for. 
• Tribal governments and organizations can help members apply for state and federal benefits and navigate service systems. 
• Native children and families may also qualify for state or county resources, whether they live on or off Tribal lands. 
• If a Tribe does not operate a developmental disabilities program, it may help families connect with state, county, or community providers. 
• Urban Native organizations and centers may offer health and other services. Some Tribes also operate offices in urban areas with large Tribal member populations. 
• Families in rural areas or places with fewer Native-specific resources may need to explore flexible options. Ask the child’s Tribe about virtual cultural resources, such as videos, books, art, music, storytelling, and interactive activities. Other caregivers, families, and local experts may also help you navigate available support. 

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