Siblings report that conversations with their parents about a disabled brother or sister’s long term care can feel emotionally charged, overwhelming, or frightening. Parents, who are focused on meeting daily needs and navigating services, are doing the best they can in the present moment. Unfortunately, as a result, important conversations can be put off for a rainy day – and often never occur.
In our practice, we often guide siblings after a parent’s death through emergency and long-term measures to protect their disabled sibling. As you can imagine, all of the siblings’ anxiety, fear, and feelings of overwhelm – not only resulting from their parent’s passing, but in the unknowns involved with caring for their disabled sibling and ensuring his or her best interests are honored and protected.
Talking about the future now is the best way to avoid difficult situations later – and empower all involved and provide clarity to family members. Conversations can reduce tension, honor everyone’s perspectives, and build a shared understanding of what the future can hold.
To help families approach these discussions with clarity and compassion, our local sibling expert and paralegal Heather Geils created a set of practical conversation starters. Remember, every well-thought-out plan begins with conversations. We hope this conversation guide helps you confidently lead your family into these critical discussions.
1. What are our sibling’s needs and wishes?
What has your sibling expressed about his or her future, and where he or she would like to live? What sorts of activities, jobs, community, or other aspects of routines are priorities? What living environment supports as many of these priorities as possible? What are your siblings hopes and dreams, if possible, to express? Is it possible to include your sibling in these (or some) conversations? Without these critical insights, decisions could be made later under pressure without truly reflecting what’s best for the person with special needs.
2. What are your parents’ hopes for your sibling’s future?
By asking this question, you can open the conversation and center it around your parents’ vision and avoid sounding like you are taking over. This may be the very question your parents were hoping you’d ask.
3. Share Your Honest Perspective and Fears
Siblings can share:
- How they experience their relationship with their brother or sister (for better or for worse)
- What aspect(s) of supporting their sibling feels natural
- What feels overwhelming
- What they hope for their sibling’s future
4. “Can we start making a plan together, so no one is overwhelmed later?” OR “What plans or documents already exist that I should know about?”
This is a unifying, non‑threatening way to begin shared planning and provides an opportunity for parents to their plans (if any). By focusing on a plan, the conversation can shift from emotional to one that includes concrete details and written descriptions of siblings’ possible roles and responsibilities.
5. Identify Each Sibling’s Strengths
Who is skilled with finances, medical details, emotional support, logistics, and service coordination? Discussing a sibling’s potential role(s) by strengths rather than guilt, geographic proximity, or professional skill set keeps planning for the future realistic.
6. Address your Ability, Capacity, and possible Guilt: “I’d like to discuss what I can realistically take on, understand what you’d like me to handle or not handle, and the reasons behind that.”
State what you can realistically do, cannot do, or might do with support. Openly acknowledging everyone’s different capacities, circumstances, and resources helps prevent assumptions, resentment, and unrealistic expectations.
7. “What supports do you think my sibling will need as he or she ages?”
Think about life span in terms of 5 or 10 year blocks of time and natural aging transitions. Will the supports stay fairly steady, absent an unexpected accident or illness? Does the disability include a marked increase in support needs beyond the typical aging process? Will residential arrangements be able to accommodate the phases of life?
8. Clarify Your Non‑Negotiables and Your Willing Contributions
For example, you might share:
- “I cannot take on daily care, but I can visit weekly.”
- “I can’t add another person to our household, but I can help coordinate services.”
- “I can’t manage medical decisions, but I can handle finances.”
Naming limits early prevents conflict later and builds a realistic picture of shared responsibility.
9. “Would you feel comfortable if we explored outside supports together?”
This opens the door to respite care, in‑home aides, case managers, and supported living options without implying parents aren’t doing enough.
10. If the conversation gets off track, validate each other’s feelings and return to the shared intention.
Examples:
- “I hear that this is stressful for you.”
- “It makes sense that you feel that way.”
Validation doesn’t mean agreement, it means respect. When the conversation drifts or gets heated it is important to bring it back to the shared purpose.
“We all want what’s best for our sibling and for each other.”
This resets the tone and purpose of the conversation.
Resources
Here are several resources and support groups for siblings:
- Nationally, the Sibling Leadership Network (SLN) organizes information, supports, and tools for siblings to assist them in advocating with their brothers and sisters and promoting issues that are important to families. Specific resources for Young Siblings, Teen Siblings, Adult Siblings, and Parents and Family Members are available.
- The Sibling Support Project (SSP) is a national program best known for helping communities start Sibshops, meet-ups for young brothers and sisters to gather, support, and have fun with other siblings.
- The Arc’s Center for Future Planning has information and resources for families, and trains professionals working with families. There are also online tools that allow families to work through a process, think about various areas of planning and get the information down in writing. https://futureplanning.thearc.org/planning-basics/siblings/
- Locally, the organization S.I.B.S. (Supporting Illinois Brothers & Sisters) connects siblings of people with disabilities in Illinois with resources, information, and networking opportunities to enhance the lives of the whole family.