Recognizing the Value of Sibling Perspectives in Disability Support

 

No matter the age of a sibling, it’s important to recognize them as valuable informants and active participants in family life. Siblings across the life span are often the quiet experts in all things related to their brother or sister with a disability or special health care need. They notice details others may miss and often see their sibling in a different light than parents or professionals do. Their insights can reveal strengths, preferences, and challenges that can help guide decisions about supports, routines, and future planning.

 

How Can Parents Include Siblings in

Decision-Making?

1. Ask them if they want to be included in the decision. Each sibling’s comfort level and emotional readiness may differ. Some may want to be deeply involved, while others may prefer to stay in the background. Asking respects their boundaries and promotes open communication.
2. Make sure they’re well-informed about the issue. Siblings can only give meaningful input if they understand the situation. Explain what’s happening in clear, age-appropriate terms. This helps them feel included and capable rather than overwhelmed.
3. Give them enough time to think about the situation. Decisions take reflection. Allow siblings space to process their thoughts before sharing. This helps them form thoughtful and genuine opinions, rather than rushed or reactive ones.
4. Keep the topic open at all times. Decisions surrounding a sibling with a disability can evolve as circumstances change. Let siblings know that their opinions are always welcome, even if the conversation started weeks or months ago.
5. The most important thing is to ask if they want to be included. When parents assume a sibling wants to be part of major decisions, especially if the sibling is not ready or interested, it can feel like an unwanted responsibility. Over time, this can lead to resentment or emotional distance. Giving siblings a choice communicates respect for their role and feelings.

It’s also crucial for parents to thoroughly consider the sibling’s perspective. As mentioned before, siblings are often experts in their brother or sister’s daily experiences. They may have unique insight into how their sibling reacts to stress, what helps them calm down, or what brings them joy. These observations are valuable and should not be dismissed. Sometimes, siblings see things parents don’t, simply because their relationship dynamic is different.

If you, as the parent, decide to move in a different direction than what the sibling suggested, it’s essential to follow up with a conversation. This keeps trust and communication strong.

Here are some tips for that conversation:

• • • Ask them how they feel about your decision. Let them express disappointment, agreement, or questions.

    • Help them understand why your decision is the best for the family. Give context, as they’ll feel more respected if they know their input mattered.

    • Explain how you came to the decision. Walk them through your reasoning so they can see the balance of different needs. Explain your reasoning step by step so they can understand how you’re balancing different needs.

    • Ask them for feedback. Their response might provide new insight or identify something you hadn’t considered.

    • Begin a compromise if possible. If they share thoughtful feedback or feel strongly about an issue, explore middle-ground solutions.

Including siblings in decision making isn’t just about fairness—it’s about strengthening family connections, teaching communication skills, and fostering understanding between all family members. When siblings feel heard and respected, they’re more likely to stay involved, compassionate, and supportive as everyone grows together.

Helpful resources on supporting siblings and keeping relationships strong:

• Utah Parent Center – Sibling Information Needs

• Utah Parent Center – Sibling Care Notebook

• Sibling Leadership Network – Information Needs Across the Lifespan